Non-verbal autism is hard to live with. Not only for a person directly affected by it, but also for the family. My boy has turned 10 last week. This made me look back at the years gone by. That and all the questionnaires we were given for Booboo’s evaluation (for his IEP etc), ha ha. Videos and pictures from the time he was born, his first smiles, his contagious laugh, his bubbly personality and social interactions with our friends and family, his voice when he spoke first words and short sentences… [wiping my tears as I’m writing this]. It’s still bitter sweet feeling, but time (and knowledge = hope) heals the wounds… God has blessed us with a perfect little dude. Perfect in every way! I just wish I knew the things I know now, back in 2007. I am sure things would have been different and our life would look totally different. But in the end, we are where we are for a specific purpose. I still haven’t figured out the bigger picture, but I’m driving on super fuel called FAITH. I know some of you struggle with belief, but I can assure you, that no matter what our fate is, the Creator of this Universe gives me enough grace to face any trial. A few years ago, when I met with a few APs, they asked me what I was on, as I seemed “too positive” to them. After all, we all had shared similar difficulties and struggles related to our kids’ autism. And logically, autism diagnosis is like a death sentence to many parents. And so I told them it was my faith. Honestly, the comfort and peace that comes with it is “extra-celestial”. Recently we’ve visited a few awesome churches and heard very powerful and encouraging messages. One specifically spoke to me and Daddy Bear – it was regarding the meaning of life, based on the lesson from the book of Ecclesiastes, where the old king Solomon reflects upon his life and all his life experiences. Yet having it all, according to him was just vanity of vanities. And you know what? He literally possessed and experienced everything that was available under this sun – there was no wiser or richer man before or after him. He had 1000 women to himself, all the gold and silver, tremendous knowledge and still could not be satisfied. There was this emptiness inside of him. The void that could not be filled with physical pleasures, parties, education or any riches of this world… The only way was UP! Yup, as he turned back to God, the peace that passes all understanding came to him. And that’s exactly what we experience on daily basis. When we stopped chasing after careers, working extra hours to get better services and brighter future for our kids, we found peace. Work should not be a priority. We thought “if we just worked 18h/day we’d be able to buy a dream catamaran and take our kids to the lake every weekend”. Ha! By the time we had enough money to get that boat, we’d be chained to job addiction and we would not have time to use it. Vicious circle. And time flies by, trust me. Before we know it, kids are all grown up and all we have is regrets… Our kids and spouses don’t want extra gifts and things that don’t last; they want a gift of time and attention, love and family time. Lesson learned.
Healthiness and breaking up with sugar – February 2nd, 2017
It’s been a while since my last update. A lot of things happening… We finally moved into our little cottage in a cute and quiet historical town in NC. It’s so different comparing to Cyprus and the Mediterranean culture in general. Our new routine is me waking up at 6:50am, putting all the lights on, calling everyone to get up and get ready for school. They growl at me, flop on the beds, pull their blankets higher to hide from me and responsibilities, and I lose my mind, ha ha. Since my sweet “wake up” call doesn’t work, I tend to use the underestimated help of my new blender – its noisy smoothie mode does the job! Yup, we’re back to our smoothies. Even little Miss V. joined the “privileged” club and so far had 2 glasses of our green-ish drink. I must say, it would probably be easier to convince my cats to drink it, but she eventually consumed the content of her glass. All jokes aside, as healthy our Booboo eats, as unhealthy my little girl’s menu is. We’re on a mission to change her dietary habits. She thinks “healthy” food is only for people who are sick or have autism. I had to explain that it prevents us from getting sick and make us stronger and in a better mood. At least she is convinced about the awesome benefits of the essential oils. She took our oil diffuser to her room and put it by her bed, saying it helps her breathe, plus it smells really nice… [Mission accomplished]
Booboo is doing great at school – not too many escape attempts, at least none that I know of. That’s huge!!! He’s visibly happy now. As we drop him off at school, I still walk him to his classroom, but he doesn’t hold my hand. He walks next to me, straight to his locker, takes his jacket off and hangs it in there. Then he walks/ runs into his classroom, skipping and smiling. I have never been more proud of him.
Another milestone is the fact that Booboo sleeps in his own bed, without coming over to ours in the middle of the night. He obviously feels content and at peace with our current life circumstances. So do we, shhhh [not to jinx it]
Since our boy is settled and doing great, I’ve been focusing on helping our little girl to break off this sugar addiction. It’s getting out of control. And sugar is hidden in almost all the foods we get. The other day, as I was firmly encouraging her to finish off her smoothie, she said “I wish healthiness never existed!”. Hmmm, case closed. Time to change my tactics, I think… I was given some awesome advise – to start smoothies with mainly fruit and some honey and gradually reducing the sweet taste and replacing fruit with vegetables. As for cereal, keep the colorful boxes of her favorite brand and replace the content with the organic and sugar free ones. I hope it works!
Finding myself at a loss for words – January 20th, 2017
Honestly, since last Sunday I’ve been literally finding myself at a loss for words – laryngitis attacked my vocal chords and larynx J Daddy Bear, although very sympathetic and caring, seemed extremely amused seeing me “speechless”… I wonder why, ha ha. Now, that I think about it, the entire clan seemed to enjoy the silence. Well, I can’t help it. I’m Polish – we are born loud!
Back to our topic, you might wonder how my laryngitis could possibly have anything to do with Autism Awareness… Well, it does! I’m telling you, I have never been more frustrated, angry and sad – all at once. Taking away my voice was the best lesson for me and in a way an answer to prayer. I often asked God would allow me to experience how my Booboo felt every single day, how it really feels to have non-verbal autism etc. And since our Creator has an awesome sense of humor, He gave a me a little spec of that J At first, I was forcing my poor throat to produce any sound whatsoever. What came out was indescribable – a cross between frog croak (ribbet ribbet), rock star’s yell and a sound of rusty hinges in the old doors… I quickly realized that was not gonna work, so I had been clapping my hands or stomping my feet to get attention instead. I just desperately wanted people to read my lips and “hear” me. Wow! Talking about explosion of emotions… My “voice-powered” husband had pretty quickly felt irritated with me as I started banging on the walls, throwing stuff in his direction etc. Yes, it was pretty much a nonstop thing! It’s because I’m a talker. Normally (with voice in order) I just let my speech go on when I see Daddy B. looking at me (although I know he’s not really listening or registering anything I say, ha ha – typical man, huh?). This time he would not even look up, and I wanted to ask questions about things or just share a thought or two… I felt mute! All jokes aside, I have never felt more lonely and anxious in my life. I also knew I was getting on everyone’s nerves as I was constantly doing “loud” things to get their attention – very exhausting! Then I looked at my Booboo Bear and felt like he’s the only one that understands what I’m feeling. He had been more calm and quiet too. Possibly because his loud Mama Bear was silenced at last J God revealed to me what my boy had to go through every single day. This experience had changed me and the way I treat our son. I hope I will always remember the feeling and my Booboo’s eyes as he watched me desperately trying to be heard and acknowledged without causing others to get frustrated and short of patience towards me – the guilt I felt and deep sadness… Priceless! It’s not easy to live on Non-Verbal Autism Avenue L.
Time to let the cubs go free – January 10th, 2016
As hard as it was to leave the school this morning, I was happy to see Booboo Bear happily getting in his classroom. He loves his teachers and new friends. Especially one cute girl there J She’s so delicate and polite… I personally thanked her several times yesterday and today for being such a good friend to Booboo.
It’s a totally new academic system to all of us. First of all, it’s a public school. Huge blessing, especially with all the services that they provide for their students! Secondly, students do not get one-to-one assistants, unless their medical condition requires that. Thirdly, program/ curriculum is still followed but in a more flexible manner. Kids are allowed to stim (walk, jump, twist on the chair, drum, clap etc.) in order to focus on their tasks. There are group and individual sessions. They get to spend good time outdoors if the weather permits, which is awesome! Putting that energy into a good use, while absorbing valuable vitamin D, straight from the sun J
Yesterday was our official first full day… I say OUR because I kind of extended my “farewell” till the dismissal bell J Thankfully the school staff was very understanding and didn’t kick me out. This Mama Bear was super anxious – probably more than Booboo, ha ha. I just wanted to see the “routine” and observe what the possible risk factors are. I couldn’t be more proud of my boy! He had so much fun in the gym, checking out his new friends and teachers. Yes he ran away a few times but school premises are fairly secure (high fencing all around it, so unlikely he’d run onto the main road). By the way, I fell in love with other students. Felt really good when they showed me attention and affection… It would be a dream to work with them! They are all super smart – each of them in different areas. The most rewarding occupation in my opinion… I might actually use my master degree one day J Wow! It just hit me! I would be doing what I love and what I studied for so many years…
Today was Booboo’s first day without overprotective, overly anxious and panicky Mama Bear hanging around J I was planning on staying in till the end of the week but changed my mind after seeing how well he was doing without me. His teachers are phenomenal and so sweet! They knew I was pulling my hair out worrying about leaving him alone, so they had sent me emails and MMS with pictures, reassuring me he was doing great J I bet he’ll fall asleep on the way home when we pick him up, like he did yesterday.
The future looks bright again! I don’t want to jinx it, but I really feel it could be the best year of our family life!
New Year’s Resolutions and Solutions a.k.a. Answered Prayers – from “A Mom’s Diary” author Ula Tinsley – January 5th, 2016
Let me dry my eyes first… You know the saying “my cup runneth over, I must drink from a saucer”? That’s us. We really do feel like the window of blessings opened up wide and it’s raining down on our little clan ☺ even our Bonnie. Our Labrador has found a “boyfriend” just three houses down from our place and now she spends most of the day with him. However, that was not our main blessing, ha ha. The biggest answer to our prayers has come today. We have contacted several schools in a district yesterday and enquired about options for our babies. I am still in awe of how quickly things are moving over here, and how supportive the school system is. Our first appointment was at 8:15am this morning and Miss V. was welcomed in immediately. She loved her teacher and made new friends right away ☺ Both Daddy Bear and myself fell in love with the school as well. We actually wished we could be young again to attend their classes. All kids use iPads and MacBooks, learning experience is truly on another level!
After making sure our little girl was OK and happy to stay in her class all day, we had a great talk with school principal and teachers, that work also in other schools in a district. We could not be happier. Such a warm welcome! We visited a couple of schools that could potentially enroll our Booboo Bear. My my! The last one we saw blew our mind. I mean literally it exceeded our wildest expectations. They had the answers to all our concerns and worries, like escape tendencies, pika and the fact that he was mostly non-verbal, before we even mentioned them! They walked us through the facility, let Booboo run and get familiar with the place, ride an awesome bike in the gym, flop on the fitness ball and chill on the balance swing. As you can imagine, Booboo felt super happy. He immediately bonded with his teachers and checked out other students (from a safe distance, of course). It is still fresh, as I’m writing this, so forgive me if my post seems chaotic and choppy. I just want to share with you all the good points, before I forget anything ☺ (my memory is fantastic because it’s short)
Booboo will be in a class that offers a great program. They will teach him more “up to date” communication skills, provide OT, speech and language therapy, horse riding/ horse therapy once a week, swimming classes (which our little fish will love more than anything, I’m sure) and so much more. I am really happy seeing both our babies leaving their schools jumping and skipping from excitement, as if they won a lottery. I know that there will be better and worse days as the school year continues, but as for today it’s been one of the best days of our lives!
We’ve prayed about it for so long… Aaaah, I can feel adrenaline dropping. Now it’s time for another coffee IV ☺ P.S. My new year’s resolution was to cut down on caffeine intake. So far so good, right? Ha ha
Chaos and disorder – December 30, 2016
Have you seen the classic winter movie called “Home Alone”? It might as well be about us 🙂 Our family holidays could not have been more chaotic!
December 24th. Last shopping for presents, wrapping things we bought and shoving them under the tree… Forget about my traditional Polish dinner with 12 different dishes! No time for that! Everyone coughing, sneezing, babies crying or laughing. Everyone rushing, minding their own business and at the same time “watching” the kids. I swear, I have no clue what my poor stinkers had eaten throughout the day 🙂 I am pretty sure there was a lot of E-xxx involved (sugar loaded candy canes, gummy bears, ginger, more powder sugar cookies etc). Oh well, we are not claiming to be perfect 🙂
December 25th. The most chaotic day ever staring off with an early wake up call, as we had to dash to South Carolina to make it to church, where we were invited to play music and sing a few songs. Because it takes more than two hours to get there, we packed all our stuff the night before (or so we thought!).
– Make sure you take your quilts and pillows, because we’ll be staying there over night and they don’t have any extra bedding. And pack some food for the kids, so they have something to eat when they wake up.
– OK Mom! We’ll take it!
– What about the dog? Will she be alright to stay alone for 2 days? – added Dad.
– No! We gotta take her with us. Problem is the car rental stated in the agreement that dogs are not allowed 🙁
– My goodness! So what are you going to do with her and who is going with whom?
– Maybe we should swap the cars and you’ll be driving our car, while we use yours to take Bonnie with us? – I asked praying they’d say “yes” 🙂
– We’re already behind schedule! We’ll be late! Let’s pack all bags and presents in the cars and go!!!
– Where’s Michael? – asked Daddy Bear
– I thought he was with you. I am packing dog’s food and going to check on the cats. They’ll be staying in the garage, so need to put extra food for them too! Please go look for our kids! – I loudly asked.
– Has anyone seen Michael?
– Yes, he’s with me! – shouted visibly frustrated Papa Bear.
– Oh no! I forgot my violin! Gotta go back in the house!
– Now?! Mercy me! – growled Daddy Bear. – I am going with Mom and Dad and Miss V. in our car. You can drive with Bonnie and Booboo! We’re so late it’s not even funny! We’ll need to drop the dog off at my sister’s house before we go to church. She cannot stay in the car…
– [inaudible reply] – apparently at that moment I looked like Gollum from Lord of the Rings 🙂
We finally made it. At the end, we dropped the dog off at my brother-in-law’s house. We specialize in changing plans at the last minute 🙂 I honestly have more respect for my little boy, who got used to our chaos and lack of routine… It completely threw me off! But after church we had fun on the ranch, where Booboo was running, chasing his cousins and playing with Bonnie and his cousin’s puppy. Super cute! The next day we had to go to another party, this time in NC 🙂 of course driving back and getting there on time was a challenge in itself. But summing it up – we loved it, just by being all together. Laughed a lot, sang songs and watched TV. Couldn’t have asked for more…
Home sweet home – our flight adventure – December 20, 2016
We’re finally here!!! Good ole North Carolina 🙂 Our first hour in America was filled with all colors of the meltdowns. We knew it was coming as soon as the plane had landed. Commotion as all the passengers were getting up, moving stuff around, talking loud, blocking the passage in the isle… Even I felt anxious and irritated. We put our coats on to carry as few things in our hands as possible. Of course the airport was well heated, which increased our perspiration to the max. As you can imagine, that didn’t help keep kids calm and relaxed. We were rushing with the rest of the crowd towards the exit and passport control. In order to get there, people were being queued in a maze, moving slowly in a zigzag manner. That picture made me think of the Temple Grandin’s famous slaughter house and cattle walk stalls… Booboo was whining, sweating and hiding his face from onlookers. Daddy Bear in his aggravation was ready to snap at any curious George that was starring at our poor little guy. Yup, he was about to lose it and we knew it. Faster breathing, increased perspiration, general frustration… He was trying to lay down on the ground but of course it was impossible, as we had to keep moving through this crazy maze. One, two, three… MELTDOWN! Booboo just collapsed and started screaming his lungs out. Security guard escorted us to priority booth and helped us get through customs… Thank God for that!
Another fun part was collecting all of our luggage (yup, all 7 massive suitcases!). That was fun 🙂 I had to just lay down on the ground with Booboo as Daddy Bear was fetching our suitcases from the super fast moving “carousel”. I managed to calm our boy by slowly counting and applying gentle pressure on his arms, legs and head… Success!!! By the time we got all of our belongings, we were all ready to see our family that was waiting for us by the exit. Precious reunion! Kids ran to their Grandparents and didn’t want to let go of them.
The following day we had to drive 5 hours to Atlanta to pick up our furry babies. That was a fun adventure. Poor cats and Bonnie Bonbon seemed a bit out of it (probably drugged up with some tranquilizers). What a difference comparing to tiny space in Cyprus. As soon as we let the dog out, she was jumping and skipping like a little puppy – thriving! Cats on the other hand have never been more stressed and neurotic. They refuse to leave the shed. I’ll need to give them more of our TLC…
Summing up, it’s good to be here and begin our new adventure.
P.S. After holiday season we plan on visiting a few schools and real estates in the area. We want our little ones to be back in school as soon as possible 🙂
Up, up and away – December 16, 2016
Speaking of crazy! Whoever came up with the relocation idea must have been crazy 🙂 You would think we would be well prepared and have all our things packed ahead… But we simply need to be the folks who subconsciously enjoy being super stressed and frustrated. Anxiety is our new family name, just so you know. Two days prior to our flight across the ocean we were still running around town like some headless chickens, closing all our businesses, cutting off electricity and Internet! That was insane yet necessary – we didn’t want to leave the house with everything on 🙂 Of course once all bags were out of the house, we decided to camp out one last time in our old house. Yup, no power, no light, no heating, no YouTube or TV, just us and our LOVE, bwahaha… Oh, and did I mention the storm of the century with lightening and thunders and flood from the sky? We couldn’t have it any other way. Booboo did NOT appreciate the changes and lack of electricity, when he was trying to switch on the hallway lights… He ran upstairs to our bedroom and realized there was no bed there 🙁 Eventually he fell asleep in Daddy Bear’s arms but that was all together a rather traumatic night for him. Well done, APs! Brilliant sentimental idea 🙂
Then our luggage… Weighing, packing, realizing we had more stuff than we thought. Gave away tons of bags to friends and charity and yet still we were stuck with several suitcases over the limit! Yikes! No biggy, but who will carry all these heavy cases, hold passports and other docs and hold Booboo’s hand at all times? As you can imagine, traveling with an already anxious, frustrated and scared little big man and his baby sis had been a challenge. Flight to London was a dream, as well as staying in a hotel overnight to get some sleep before the final long stretch across the pond. To keep Booboo calm we dropped all our standards and loaded him with gummy bears, crackers and, Lord have mercy, coke! You would think it’d work, huh? It did! We now have a beautiful baby boy with some eye ticks and inappropriate laughter on the plane. Louder and less cooperative 🙁
I am writing this half way there. Keeping our fingers crossed the last few hours will be calmer for all of us on board 🙂 My advice? If you travel with an autistic boy, don’t change your diet and reinforcements. Don’t bend under pressure. Consequences are a killer 🙂
Steakhouse, anniversary and perfect children – December 7, 2016
Ladies and gentlemen, I think we might have hit a jackpot! The great packing has begun. I am trying to have all our businesses sorted before next week’s exodus. As I was running around the house like a headless chicken, I was hoping Booboo would find some cartoons entertaining enough to sit still for 10 minutes. Of course he would not, but lo, he was flipping through channels and stopped on Food Network – cooking show. I’ve never seen him so focused 🙂 TV Chef was chopping onions, garlic and herbs, pouring olive oil in the pan, adding all chopped ingredients… As you can imagine, we both ended up sitting down and watching the whole process of sizzling deliciousness 🙂 I know what will be our “therapy” during this Holiday Season! My little chef found a new passion.
Every now and then I go through his tablet to clear cache and uninstall some old apps. What I found? Bingo – all kinds of cooking games and apps. I have a sneaky suspicion little Miss V. had something to do with it, as most of the apps are “pinky” and feature her favorite cartoon characters, ha ha. She just knows her brother so well. I should stop my daily chase and listen to my little teachers. So much wisdom there 🙂
The last three days we’ve been traveling a lot – closing accounts in different institutions and offices. Don’t you just love queues and very particular administrators/ clerks that are willing to check everything dated all the way back to your five past lifetimes? [sigh] And I thought Autism is a lesson of patience 🙂 Being on the road and in admin offices a lot means poor food options. Today Booboo had ASD spells that had been pretty challenging – pulling the roller blinds, curtains, jumping on the dining table, climbing on and in the fridge to name a few 🙂 The good thing is that because of all that Daddy Bear has finally realized that there is undeniable link between food we eat and our actions and how we feel, gut – brain connection. It is true! We are what we eat, or should I say we act what we eat 🙂
I must brag a little bit on my little ones. Last night we went to a really nice steakhouse. Daddy Bear booked a “quiet” section for us and we had a private room, although restaurant was very busy. I loved it. Plus we got coffee and desserts on the house – after all it was our 11th wedding anniversary 🙂 I was worried we’d have another “stressful” tantrum-ish evening, but I couldn’t be more wrong. Kids were behaving like the “perfect children” in the movies. I was so proud of them! Couldn’t have asked for a better date night 🙂
Stay tuned and patient with me, folks! Good stuff is coming 🙂 Love each and every one of you!!!
Raining Cats & Dogs – December 1, 2016
I think I damaged my cat 🙁 I’m starting to think that cats are not meant to be dried with a hair drier 🙂 Speaking of my zoo, it is truly raining cats and dogs over here – I am glad we don’t have to leave the house much these days… I was feeling sorry for our poor flock, so I opened the window and two wet fur balls jumped in, making my floor and carpets a total mess. You can imagine what it did to my OCD, ha ha. I quickly threw some bath towel on Sven, but he was not impressed. So I figured, hey, why not giving my cats some pampering and pleasant warm air… After all, that’s what “pet spa” does, right? So I grabbed Sven, who was looking more like a rat than a cat, as his fur was completely soaked and stuck to his skin. I was holding him with one hand, while switching the hairdryer with the other… I’ve never seen a cat jumping up to the ceiling in a split second 🙂 I probably should have stopped right there but I figured I would show him it’s nice and fun. Boy was I wrong! He was so mad at me. Refused to eat his favorite food and come to me to pet him… I mean it is serious, folks! Seeing another storm coming, I let the cats in again but Sven was begging to go out. He would rather sit in the rain and hail than potentially face another hairdryer episode. Totally broken trust 🙁 I hope he’ll eventually forgive me, though cats never forget 🙂
Again, I see a lot of similarities between cats and autistic kiddos, especially my Booboo Bear. It’s hard to gain trust with him, but once you do, he’s your best friend. But try to promise something and then forget you made a promise… Hope is crushed, trust is broken. He’d rather sit outside in the rain than be in the same room as the “traitor” 🙂 Even when I get him his favorite snacks and (guilty!) chocolate, he is not interested. Punishment! Eventually he’d come to look at the bribery items and nonchalantly take one small bite, to quickly run with the entire “taboo food”. Yes, he forgives but he never forgets 🙂
I wish I could hear his thoughts… Our biggest priority, once we get to the States, will be teaching him new ways of communication. PECS are very limited, and he keeps losing the pictures. I want him to write full sentences. I want him to learn to type, if possible. Sign language is very good but again limited, as not many people other than family and therapists understand it 🙁 I was testing “PECS”-like apps alas Booboo is not willing to use them. Maybe some therapists there can convince him to start using it. They are great because you can keep adding sentences, individual pictures etc. Worth a shot!
Green Power and Engaging a Neurotypical Sibling into an ASD Play – November 29, 2016
Watching my boy giving full attention to Disney series “Sofia the first”… At first I was politically incorrect and thought “hey boy, you cannot get a more girly show than this!”, but then started thinking outside of the box. I joined him on the couch and started watching little princess with him. I quickly realized the show is full of songs and there is a lot of background music throughout each episode. Duh!!! He loves the songs. He wouldn’t care less about the girly “princess” stuff 🙂 I quickly followed this trail and downloaded music videos on his tablet. Guess who was very happy 🙂
Another thing I’ve noticed is a desperate need for a friend. Booboo is someone I would call socially awkward – doesn’t seem to get etiquette and social rules. Since his baby sis is the only person he’s around, he is trying to engage her in a play. That is his play 🙂 – bouncing on the big yoga ball or throwing pillows at each other followed by a super fast chase around our living room. He grabs her by the arm and drags her on the floor like a caveman. She’s often fed up and doesn’t want to play. We’re trying to encourage her to engage in playing with her big brother. She understands he doesn’t have any friends to play with, so occasionally she “sacrifices” and lets him watch silly DIY YouTube videos with her. Strangely enough, he is now watching these even when she’s not around, finding them amusing!
As we’re preparing to leave this lovely island, the kids are getting “too excited”. Perhaps it’s because we keep talking about our plans for the coming Holidays with the family, new schools, teachers and new friends… Plus the adventure of road trip to see some specialists across the States, who might be able to help us through proper detox, supplementation, chiropractics, acupressure etc. I’m not giving up! Never will, as long as I have breath in my lungs, as God is my witness!
We’re back on the “mean green“ juice. Booboo drank his glass super fast, meaning he truly enjoyed it 🙂 And it’s super healthy too:
3 celery sticks (I juice with leaves)
1 green apple
2 Tbsp of Green MagicPowder (by Proto-Col)
Adding 5 drops of Super Fulvic Iodine (by Dr. Nuzum)
That’s all folks! You can check out Booboo devouring his juice and much more on my Facebook page (www.facebook.com/URSA.Constellation.Of.Autism.Mama.Bear )
1st Annual Cyprus International Conference on Autism Treatment and Research – November 23, 2016
1st Annual Cyprus International Conference on Autism Treatment and Research “Magic Always Happens Through Our Interdisciplinary 360 Approach To Autism” has come to an end. It’s been great 5 days, filled with workshops and lectures presented by some brilliant experts and research scientists, psychologists, doctors, speech therapists and authors like our dear friend Dr. Stephen Shore. He was speaking on “Promoting Social Inclusion of People with Autism in Education, and Navigating Sensory Issues through the Lifespan”. Very important subject, as that’s what Autism Awareness is all about – to educate schools on the importance of inclusion of autistic kids. There are so many ways to accommodate their needs and help them adjust to neurotypical academic environment. Dr. Shore highlighted the importance of addressing one’s strengths rather than “disabilities”, which he called “Turning Lead into Gold”. For example, a child who is judged to be hyperactive, can also be considered a kinesthetic learner. A student with special needs in a regular English class who is unable to stand still and focus on reading can be afforded another way of meaningfully participating in the lesson, for example by sitting on a fitness ball or a stationary bike – constant movement would help him focus and remain in the classroom with other students.
Second part of the lecture was regarding sensory issues, recognition and prevention of bullying. It had interactive role play/ workshop to illustrate what sensory overload feels like to an autistic person. Attendees were divided into groups of 6. One person was “autistic” and the other 5 had different tasks to do at the same time, like shoulder patting, poking, reading instructions out loud, scratching with a business card, shaking a chair that “autistic” person was sitting on, etc. All at the same time! Then everyone shared how they felt as being the “autistic” one. Very good exercise to raise autism awareness and understanding!
Dr. Shore made us laugh, sing in unison “where oh where does this autism come from?” and he definitely made us think about sensory issues that autistic people deal with every single day. Great advocate for the cause of autism awareness!
The audience left a bit disappointed when his lecture was cut short due to time restrictions. Everyone I talked to had fairly enjoyed their experience with Dr. Stephen Shore and wished they could hear the last part of his presentation, which was to be on preventing bullying, as well as addressing challenges in supporting people with autism in the areas of relationships and sexuality.
As good as this conference was, having all the world renowned speakers from all over the world, I must say, it had not been promoted very well. That was a general feeling of all other attendees I have spoken with. Because it was the first conference in Cyprus on such scale, many details seemed to have slipped by – like better PR, inviting academics representatives and explaining the importance of their attendance. Well, there is still a lot of place for improvement but I’m sure next year Cyprus will do a magnificent job!
Holiday Spirit meeting Polish Thanksgiving – November 16, 2016
Is it just me or are there other crazy people out there excited about he Holidays? It looks like it’s going to be the first December ever without any Holiday decorations over here 🙂 But I am not sad… Yup, we’re moving! Finally, it is official 🙂 And check this out! The area we’ll be staying at has one of the best services for kids on the spectrum! Plus one of the best children’s hospitals in the country is just “around the corner”! I’m so excited I am having trouble keeping my hands steady! Accommodation – sorted. School and therapy program – promising, almost sorted 🙂 Suitcases – not even close to packed. We always leave everything to the very last minute. I guess it’s because we enjoy being super stressed haha. I wish I could be more like my Mom. Always so organized and everything taken care of in advance, all bills paid first, all papers and documents always neatly sorted in files and folders. Our cabinet(s) with “important” stuff is…. Hmmm… let’s not even go there!
This spirit of joy and excitement seems to be contagious. Booboo Bear loves listening to us sharing the plans and vision of how it’s going to be over there – running in the fields, building a snowman, having a snowball fight, going to town center and enjoy all the festivities and illumination. The Holiday season in America is magical 🙂 And not because of super sales everywhere but because of the general spirit and people being more kind to one another.
I’m already planning my special menu. Our family tradition is to celebrate Polish Holidays (12 different dishes, family together, exchanging our gifts, and watching some classic Holiday movies to help digestion). Then the actual holiday celebration is an all American extravaganza. Mom prepares the most delicious breakfast with freshly squeezed orange juice, pancakes, hash browns… and then we all run to open our presents. It’s always so much fun.
Many people asked me how the ASD Holiday time looks like in our household. Well, wait another month or so and you will find out in detail 🙂 I will post some of my favorite Holiday recipes too. Promise!
Right now we’re looking forward to Thanksgiving spent with my parents. They are coming all the way from Poland 🙂 I’m pretty sure it will be a Polish fiesta with American twist. I can’t cook traditional Thanksgiving dishes 🙁 But that’s the beauty of international marriages – each person brings a piece of their own culture (and cuisine) into a relationship. My Mom cooks heavenly!!! It will probably be the last time we will get the privilege to taste her food.
Dinner with friends… – November 10, 2016
The bizarre things we say and hear in our ASD household. Not to mention all the things we do and do not 🙂 Psychiatrists would have a ball watching our life in some form of a reality show… Example: Imagine having guests over for dinner. All sitting around the table, enjoying their food; and here comes half naked boy, grabbing a handful of chocolate cheesecake from our guest’s plate and running with it for his life. Why the guest’s plate and not ours? Because he knows that we’re fast and guard our food too well, while our friends are unaware – or in other words – easy target 🙂 Shock in their eyes! Confusion! Awkward!!! Thoughts running through everyone’s heads, exchange of looks between myself and Daddy Bear, guests counting the floor tiles… Do we acknowledge the fact that the boy is proudly “flying” commando or that he’s trying to swallow a massive piece of cake in one go avoiding being caught? Miss V. not making things easier shouts “Mama! Michael has no pants on! Inappropriate!”. Oh, is it now? And so we have a spectacular chase around the dining table. Our little girl tries to block Booboo from one side as I run from the other direction. Daddy Bear trying to keep guests entertained with a casual conversation on movies, food and politics, as if nothing happened… Nothing to see here, nothing to worry about, let’s keep talking 🙂 At the same time Booboo easily pushes Miss V. out of the way to his freedom, or as I call it – bathroom a.k.a. sanctuary of temporary peace and solitude. Of course chunks of cheesecake leave a trail of stickiness all over my floor, which I try to clean immediately, while getting involved in the ongoing conversation – which, I’m sure, makes our guests even more uncomfortable 🙂 Hysterical laughter can be heard from the bathroom. Miss V. screaming in horror “Mama! Michael is hanging on the door! He’s breaking the handle! Quickly!”. All this is happening within 10-20 seconds max. In high decibels! High speed, lots of motion and commotion 🙂 Our friends exchange shy looks, unsure what they should do or say. Daddy Bear stands up to take our boy off the door. “Michael! No! Don’t eat the soap! Spit it out now!!!”. Then he pops his head through the door and informs me “he just ate a chunk of soap bar, can you check if he’s OK?”. I smile and excuse our guests to swap with DB, so he can continue entertaining our horrified friends…
I could go on, but you get the picture. Odd is the new normal 🙂 But I wonder why our friends don’t visit more often… Perhaps they are not big on chocolate cheesecake 🙂
Stay classy and don’t eat bar of soap! Or any soap for that matter; unless it’s all organic. Kidding!!!
Therapy cat, insomnia and reset button – November 8, 2016
Once again, I will praise the therapeutic quality of cats and one in particular – our gorgeous Kristoff, a.k.a. the complete cat. Sven, his twin brother, is our incomplete cat due to lack of a tail. So now you know 🙂 When everything seemed to be triggering Booboo’s tantrums and occasional meltdowns, Kristoff would come and lay down right next to him, purring and putting his paws on our boy’s legs. I’ve seen such behaviors with certified therapy dogs but never with cats! There was a viral story online about one autistic girl and her cat. They were inseparable. He’d even get in a bath with her! Our cats speak in tongues when I give them a quick wash 🙂 They literally meow “noooooo!!!”. Kristoff has never been trained to be a therapy pet yet he knows exactly how to quiet the troubled mind of our boy. It is fascinating to observe them interact with each other.
Behavioral update: AAAAAAHHHHHHHH!!! Yup, that pretty much sums it up. Booboo has never been more hyper! He’s literally doing all kinds of things that a neuro-typical child would have never come up with [sigh]… Since the increase of panic attacks and insomnia, I’ve been doing the recap of all possible scenarios that might have had triggered this regression process… I even decreased the dosage of Immunocal (glutathione) and green magic powder, as they are known for their energizing/ stimulating qualities. But nada 🙁 Perhaps it was the anesthetic used in dental office and the procedure itself (cleaning cavity on the upper molar and putting a filling), or fast food cheat meal. Why did we give in to our girl’s special request to have McD’s?! AGAIN!!! And yes, Booboo had those horrific fries.He used to eat them quite often, especially during a disastrous treatment with Strattera, while a few McD’s fries were the only “food” he would tolerate!
As I was driving myself bonkers, I was reminded by a friend it wouldn’t change anything. I should just press the reset button and start over, even if it means going back to the start point…
We are now on strict GFCF diet again, enriched with fresh, organic produce, smoothies, and no sugar or fries 🙂 I know progress does not happen overnight but I am optimistic. Time for some serious probiotic bomb, like sauerkraut and other fermented veggies. I want to get our guts healed before moving to the States. We still have some time to achieve that!
And hey, big day for American people! Don’t worry, I will not discuss politics in here 🙂 I just pray God would give wisdom and guidance to the ones that go and vote today. It really does matter who becomes the next POTUS. Especially when it comes to Autism and our freedoms…
There is so much to be grateful for every single day! I am truly blessed beyond measures 🙂
Reshuffling our priorities – November 1, 2016
It’s been such a rough week, and not only because of our common cold… Oh man, I can barely see what I’m typing. My eyes are filling up with many tears right now. I’m sure other APs will know what I mean, when I say my Booboo has been “nonstop”. I don’t know if it’s because of corticosteroids or another factor that triggered this spiral downfall.
I wish this could be a post on yet another achievement and massive milestone… We are 10 steps back, maybe 20 🙂 Booboo has been having problems sleeping, waking up at 3-4am whining and growling. He’s less verbal and experiencing more pica compulsions. We temporarily gave up healthy cooking, as we were all feeling horrible, so take-away or drive through became our only options. I don’t put all blame on the food we’ve had or the nebulizer treatment. I know external factors played a great role in the overall equation of this nightmare.
The most heartbreaking part for me was Booboo’s panic attack. He started hyperventilating and whining. Then cry grew into scream and we had a full blown meltdown. I had no idea what caused it, as everything seemed “normal” – no sensory triggers, no loud music or TV. His sister was at school… He was gasping for air, looking in my face with fear. I talked him into breathing slower and tried to stay as calm as I possibly could (yet terrified inside). That has been the worst experience by far. I know he’s anxious about his routine being messed up, grandparents not being here and him being stuck at home with me all day… That’s why we need to do something about it. We reshuffled our priorities and decided to move soon, irrespectively of our house sale. The wellbeing of our boy is at stake here. I know by now that God always provides wherever He leads. And I’m resting in this promise today…
I have to run – Booboo knocking all the chairs down and pulling the curtains. Like I said, he’s been nonstop 🙁 Looking forward to the end of this day, this month…
Common cold and common sense – October 26, 2016
Is it a car? No! Is it a plane? No! It’s a bronchial cough coming from our bedroom 🙂 Flu season is upon us… Started with Miss V. then moved to Booboo and now Daddy Bear too. Don’t ask why, but I just had a revelation that common cold is a lot more common than common sense these days.
I’ve been rather creative and quite busy the last week, clearing the air in our house by diffusing essential oils (frankincense, peppermint, wild orange and rosemary). Besides that I have been preparing vitamin C bomb syrup (freshly squeezed lemon juice with honey in 1:1 ratio) and garlic bread. Yum! My babies have not been impressed, to say the least. But they wanted to be well fast therefore they didn’t argue with me and have been taking “mama’s medicine” with eyes closed and nose covered 🙂 Today they are almost as good as new, thank God!
Over the past few days I have been watching Booboo and the way he was bonding with one of our cats – Kristoff. Wherever Booboo went, Kristoff would follow. It was precious to see this fluffy little thing lying down next to my boy’s head, purring and massaging his back… I’ve heard cats can detect “sick” places on our bodies – they are the best scanners after all. Cats draw out negative energy, and are unbelievably soft in touch (perfect tactile stimuli for sensory experience, ha ha) 🙂 Yes, I love cats! My little girl feels a bit jealous of all the attention Booboo gets, even from the cats. She’s decided to drag poor things and “pets” them by force, like Elmira from Looney Toons :). Cat meowing can be heard between the coughing sprees… The terrifying thing about my boy getting sick is that he is not able to tell me what exactly is bothering him. The good thing is that he knows to come to me and let me know he needs help. Moments like these make me want to find a better way to help him communicate with us…
Speaking of that, I am really excited about AutiZmo robot. It has been designed by a young lady with a genius autistic mind, Dr. Catherine Demetriades. If this robot gets released, it could be a breakthrough in autism research and development – especially for families of non-verbal kids on the spectrum. AutiZmo robot has been designed to “scan” an autistic child and detect what he or she is feeling and thinking, so the robot could translate that to child’s parents. Check it out: http://www.AutiZmoRobot.com/ What’s amazing about this invention is the fact that Dr. Demetriades and other scientists involved in this project want AutiZmo to be affordable to average family, and not only to the rich 🙂 Don’t you wish we had more scientists like them?
We should never lose hope, folks!
How to tell a neuro-typical child about their sibling’s autism – October 20, 2016
I think I’m drinking too much coffee 🙂 I’ve been suffering from a debilitating headaches and, as you can imagine, I refused taking any drugs (like Paracetamol). Yesterday I had no choice but to endure the pain, as prostrating with a cool compress on my head was simply not an option. I had to be on my toes, literally, pulling Booboo off the bathroom door, chase him through a trail of spilled liquid (which I truly hope was just water!) and continuously feed my picky eaters – human, feline and canine. Love them all but boy do they eat! And yet their metabolism is practically instantaneous 🙂 especially with the canine one! Bonnie Bonita is one of a kind dog for sure… She smiles showing off her gummy grin every time you speak to her. It looks hilarious. I have never seen another pup like her.
Miss V. came back from school with congested nose. Thankfully she seems to be in over all good spirit, probably because of the coming school party this Friday 🙂 Speaking of my little girl, she doesn’t seize to amaze me. I ordered a book for siblings of autistic kids. It’s pretty awesome, I must admit! It’s called: “My brother is different” by Louise Gorrod. It’s written in a very simple language. My 6 year old read it out loud, while we were eating lunch. She said: “Mama, it was written about Booboo!” I recommend it for anyone who has a neuro-typical child, trying to understand their ASD sibling. It touches on sensitive subjects like “odd” behaviors, screaming, biting, toilet accidents and lack of speech- to name a few…
Regarding our circumstances, we’re still in Cyprus. We’re still unsure when we will be able to go home and start our life, as we envisioned and prayed about. I want to move! I want to be with the family and to be able to send my children to schools that could offer proper care and education for them. I want to see my stinkers thrive. This waiting period is a true test of patience, maturity and, most of all, faith. I know everything happens for a reason. Even this “delay”…
Booboo Bear has been studying a lot of “talking flashcards” and audio of animal sounds. His favorite this week is Maple Leaf Learning Channel from Canada. They have great videos with songs and flash cards – emotions, action words, body parts… you name it. Check it out: https://www.youtube.com/user/MapleLeafHashima
Sending you tons of love and positive vibes from the sunny island on the Mediterranean Sea 🙂
God bless you, beautiful people!
The good, the bad and the ugly kind of laughter – October 14, 2016
I have been dancing on the ceiling from joy… My boy keeps coming to me today and gives me spontaneous hugs and kisses 🙂 He knows how to charm me. I was complaining about him to his dad yesterday, because he had been doing everything possible (and impossible for that matter) to get my veins pop! From getting all cushions off the couches, unzipping them and getting all the covers off, through climbing all the furniture and door, to peeing wherever he chose to 🙁 Not much fun running with a mop with added natural disinfectant in a form of tea tree oil and orange oil (for nice fragrance). There was a lot more mischief but I try not to focus on that. Today is a new day! Apparently Booboo agrees with me on that one 🙂 He’s been a real cutie. Shhh, let’s not jinx it!
One thing I must share though. When it comes to laughter… normally we love when our kids laugh out loud. It’s supposed to be contagious and bring overall joy at home, right? Well, there is a good, sweet laugh and there is a being-a-real-piece-of-work laugh, which usually means trouble. Yesterday Booboo made sure I’d experience a lot of that second kind 🙂 I felt so guilty for getting frustrated and mad at him for laughing. It sounds horrible, I know. One could think I’m some kind of a monster mother for praying that the laughter would stop. But honestly, it made me feel so angry, because I knew it was to provoke me to chase him or just do whatever he had in mind for me to do. Just for fun (his, not mine). Like cats! You know I believe cats are autistic, right? Cats just come in the house, in a very nonchalant way, ignoring everything and everyone else. Then they just lie down on the laptop, just because you’re trying to work at that very moment. Or knock over the bottle of water standing right next to you. Why? Because they are bored or want your attention without asking for it 🙂 It’s exactly the same with my precious Booboo Bear. He’s doing the mischief to get my attention. Somehow in his mind giving him my full focus while I try to help him with handwriting or doing our homeschool work is not real attention. This is really annoying. And yes, sometimes I lose my patience and speak in higher decibels 🙂 Ask my neighbors, or Daddy Bear 🙂 Apparently my voice echoes all the way across the island, ha ha. Yes, I am a work in progress 🙂
I wish I could say I’m living my dream… Although I’m not, I can definitely say I am truly blessed and I enjoy getting these lessons and surprises that life throws at me. Not all are depressing and bad. In most part autism can be a fun adventure, once you enter your kid’s world…
To drill or not to drill, dent-ist the question 🙂 – October 11, 2016
Awww, I love this smell… dentist’s office. All the sterile materials and tools – I love it. We’re here with Booboo because I noticed two suspicious cavities on both sides of his lower jaw. One of these teeth had been previously treated with partial root canal (which I was talked into doing, and regretted immediately after we left the office). This is a great article on why I’m opposed to root canal treatments (https://thetruthaboutcancer.com/root-canals-cause-cancer/).
We had a super hyper week and occasional outbursts of screaming combined with biting “for no particular reason”. My intuition was telling me it could be his teeth. And I was right!
Office is very bright and child-friendly with an orange reclining chair, TV screen above patient’s head so he can watch cartoons while the work is being done on his teeth :). There is also a beautiful wall to wall window overlooking town center… Booboo already knows the office and remembers every single detail in it.
Look at him climbing on the chair and laying down, getting himself ready for the procedure. I’m so proud of him. Daddy Bear is holding his arms, while I lean over Booboo’s legs, pinning him down to the chair, just in case he moves.
– Open wide, I need to see your teeth, please… (like a pro, he opens his mouth wide, looking at the doctor)
– Very nice! I can see some cavity here and here (yup, Mama Bear was right). I’m afraid this one has an abscess. It had a root canal and probably it got cracked or something and infection got in the tissue…
– That’s why I don’t want any other teeth treated with this method. His fillings will eventually crack because he bites on things (toys, utensils, pencils etc). If you think he needs a root canal, just pull the tooth out.
– But it’s number 4 and 5! You want me to pull them both?
– Yes :(. After all they are baby teeth and will be replaced with proper teeth in a few months, right?
– Well, yes. But until then he will need special braces to make space for the new teeth and to prevent the other teeth to move forward.
– I think we’ll be alright without it for a few months! [hello! Sensory issues would make him rip those braces right off]
Little anesthetic shot, numbing half of his face… Poor Booboo touching his cheek a bit shocked :). Here we go!
-Take a deep breath! [Daddy Bear is following the instructions, while I’m watching the procedure]
Both teeth are now out! We didn’t have to hold him! We just stroke his hands with comfort, letting our boy know we’re with him…
Again, I talked Booboo through all the steps that would take place (from opening the mouth, putting a mirror, shining a bright light in and injection, numbing his jaw and cheek). He was as good as gold! That’s my boy!
I’m not good at mommies’ talk – October 7, 2016
Yesterday I posted on my Facebook Page a short video of Booboo swinging, with a comment: “Sometimes counting is a lesson of patience for me. Notice, I actually went to our local playground with my boy. All alone. And he didn’t run away from me!!! And sort of participated in counting to get it over with 😉 #swinging #autism #autismawareness #counting #happy #LettingGoOfFear #lovingpush #outofthecomfortzone”. It should not surprise me when I get sweet but naïve messages, like: “It must be hard for you without help. Why don’t you bring him over to my place to play with our kids?” I do appreciate the good will but it frustrates me that I need to explain every single time why it wouldn’t work… Again, it’s because of the lack of autism awareness.
People don’t get it, that if you leave your window or door opened, my boy would run/ jump out right through it, with no sense of danger! Going to the playground should be relaxing and fun time for both kids and parents, where parents would be sitting on the bench with some good book and a cup of favorite beverage, while little ones would run, slide, swing, chase and come over for a swig of water… Kids need sun exposure, vitamin D, etc. “Bring Booboo over, we’ll be there too with other mommies and kids. We will keep an eye on him”.
First of all, I am not good at “mommy talks”. I never was. Maybe that’s why I never used “baby talk” while speaking to my little creatures. I always expressed myself in full sentences, using all the big words, both in English and Polish 🙂 I don’t like talking or hearing about “grossness” (sniffles, poopoos and spitties, ewww!!!), or other kids’ success. I am happy for all of you, mommies and daddies out there, because you should be proud of your babies. I am blessed to be a mom of both neuro-typical and autistic children and experience both big and small successes – each so different! So yes, unless you’re a 24/7 AP (autism parent) you won’t understand the hurt we feel, when you brag on your little ones, especially in front of our ASD superhero. They are not deaf or stupid. Just because they don’t reply back doesn’t mean they can’t understand either your words or the fact that they are different. Autistic people often struggle with very low self-esteem, anxiety and depression. Please don’t add fuel to this fire by being ignorant! Another thing is talking to them as if they were mentally challenged (slower, baby talk, higher pitched tone of your voice!). It bugs the bugs out of me 🙂
Didn’t mean to vent and bash neuro-typical parents. It is just so clear that people have no idea about autism. This is what frustrates me. ASD is more common than flu. Would people be more eager to learn about it more if it was contagious? Just a thought…
Decoding speech through melody of the language – October 6, 2016
Watching “The Voice” with all my stinkers, unwinding after a long day 🙂 I’m so relieved that our girl started school again. We do hope it’s only temporary, as we’re ready to move… She enjoys being around her friends and teachers. Booboo heard us talking about his little sister going back to school, and he saw me preparing her uniform the night before. It was the longest night ever. For him and us… He would not go to sleep, even after taking melatonin! He’d be laughing hysterically, knowing it really frosts us, as the British say 🙂 The following morning he was sleeping in – no wonder! As I was taking Miss V. to school, he woke up, hearing the gates shut. He ran downstairs crying and then screaming seeing us leave. When Daddy Bear told me about that, I felt a huge squeeze in my heart. It was heartbreaking, really…
I wanted to make it up to him and make our day special. I was able to focus all my attention onto him. Sure he was naughty, showing me he was not happy about staying home, while his baby sister is at school. He loves learning and, what surprises many professionals, he enjoys being around other kids. He probably feels like he’s being punished and his sister rewarded. But it’s not that simple. There are not many schools that can deal with autistic children, especially in a neuro-typical class. We need to get him to a proper center/ school, where the staff is trained and knows how to teach kids on the spectrum. I don’t want to deprive him of academic experience. Temple Grandin said, these kids need a loving push. We just need to learn how and when to let go.
Weather is changing here in Cyprus. Although it’s still hot and sunny (temperatures remain at 32C, 90F), it’s unbearable because of the high levels of dust and dander. Normally Booboo would be on his second or third nebulizer treatment, or antibiotics due to bronchitis resulted from allergy/ asthma like symptoms. We had medicine-free Summer and now Autumn! I don’t want to jinx it, but I really can tell the difference in his immune system! I believe it IS the combination of our power smoothies, glutathione (Immunocal) and a few supplements (milk thistle, magnesium, Zinc and vitamin B complex, plus fish oil and probiotics). It’s been only a few months, so I don’t expect miracles (although I should!), but I can really tell the difference…
Regarding speech development – he is talking to us in melody of the words, not pronouncing the words properly. I can understand him better than anybody. When he’s asking for magnesium supplement for example, he says “ga-kee-shio” singing notes C-F-C. No doubt he has a musical ear! But how to get him sing the words out?
We’re praying for a quick sale of our house and a prompt relocation, for Booboo’s sake. There’s so much we could do for his education and therapy, being there…
“Temporary” times require temporary measures – September 29, 2016
Once we realized our move across the pond might take longer than initially planned and hoped for, we decided to arrange temporary school provision for our girl. This way I will have more time to focus on our boy and his academics. A couple of months break from school (including Summer break!) is a bit long, especially for ASD person used to schedules and organized work… It’s going to be easier to do my job, without a little 6 year old commentator narrating every single move I’d make 🙂 We’re excited!
Update on our observatory – neighbors installed some sort of blinds in their windows 🙂 I hope it was only due to a desire to upgrade their home value and not because of some curious George across the alley watching every move they’d make, ha ha.
You know what? I am not good at staying home. I admire those ladies who do. It’s been only a month and I had already been posting leaflets around my village, saying: “Sanity lost. Big reward for the lucky finder!”. Seriously, how do they do it? I must work on “letting go”, and no, I don’t mean perfecting a tune from Frozen. I mean letting kids be kids. I struggle with my OCD – everything must be tidy and neat. It bugs me seeing scattered toys around the floor. I don’t mind cats and dogs shedding everywhere – I vacuum and mop and it’s done. But the toys and pieces of paper are too much to digest 🙂 Therefore I make my poor kids keep their toys tucked away on the shelves and play only with one thing at a time and make sure they put stuff away. That worked for my parents when I was little – military upbringing paid off – blossomed my OCD 🙂
As I am writing this, Booboo is circling around the coffee table, holding an empty tray and a fork, and my little Miss V. is doing some sort of boot camp workout – I must admit, she’s pretty good – lifting her stretched out legs while suspended on straight arms between two couches. I used to do that when I was her age…
Booboo on the other hand is flexing his body – all kinds of exercises on the fitness ball. Today he was working on his balance. Jumped on the ball with his knees bent and straight arms (cat position) and stayed this way for several minutes! I’d bust my face on the floor after a few seconds 🙂
In general (tfu tfu tfu – I don’t want to jinx it!) – we’ve been having a good day and kids seem happy. Mission accomplished!
Window observatory and neuro-typical siblings with an A-dar. – September 27, 2016
Booboo has discovered our neighbors’ window! Let me explain. Our houses are built in close proximity, ergo the windows are vis-a-vi each other. Thankfully we have bars installed in all our windows for safety reasons – to prevent burglars from breaking in, and even more so, from Booboo trying to escape. That makes it easier for him to hold on to the bars while standing in the window frame. Sort of like a monkey in the zoo 🙂 I try to let go of “micromanagement” and let him just be a kid, have fun, get creative with games, etc. Of course, I watch him and always make sure he’s safe. He started climbing onto the window and spending a lot of time just starring at our neighbors’ house. Oh yeah, I should have mentioned that they don’t have any curtains or blinds, which makes it a perfect, undisturbed view for my little curious George. 🙂 At first I thought he was observing the birds or our cats outside, then I realized he is watching a “daily living” reality show 🙂 We couldn’t ask for better neighbors. They are very sweet and didn’t mind seeing our boy in the window, with his eyes glued to their living room…
So that would be it, about what’s new… We continue our regime when it comes to morning smoothies, supplements and diet in general. The big thing we’re considering is getting Booboo back into a therapy program. Since he’s out of school, he needs well scheduled academics combined with therapy. I gave homeschooling a try. And probably I would stick to it, but it’s impossible with my little girl around. Perhaps it’s a jealousy issue… Every time I would give Booboo a task, she’d be coming over checking and making her little comments, like “ah, that’s too easy, even a baby would know the answer to that!” or just shouting the answer before Booboo would have a chance to think. It’s not easy for a neuro-typical sibling to understand the whole idea of autism. I know that! She’s only 6 and is a fluent reader, knows about astronomy, solar system – even more than me 🙂 She needs more challenging tasks but when I give her some more complex math problems, she gets easily bored, and wants my attention to watch her solve the equations… It’s not fair for her, I know, but I cannot neglect Booboo’s needs. She understands her brother is different and why. She even notices other autistic kids when we’re in public places. We all have an A-dar (autism radar)… You can check our short interview on my YouTube channel: https://www.youtube.com/watch?v=1thevYExrT0
We are looking forward to getting her back in school 🙂 Praying and believing the best is yet to come for us all…
Waiting, eating and hoping… September 23, 2016
I’m tired… Not from limited sleep or physical rest. I’m tired of waiting. We have our plans, our dreams. So far everything has been moving smoothly – shipping our things across the ocean, selling a bunch of things, preparing ourselves logistically, browsing the web in search for a perfect place for our little ranch, etc… And here we are today – everything seems to be hanging in the air. We wake up, go to work (or stay home with the kids in my case), meet for lunch, go back to our duties, reunite at night, put kids to beds and collapse… It’s hard to find joy in waiting, but we know this delay is not coincidental! We cling to the promises from Romans 8:28 “And we know that all things work together for good to them that love God, to them who are the called according to his purpose.”
I am refocusing my thoughts, from worrying to counting our blessings. The other day, a friend popped by to bring a bag of fresh produce from her garden. Delicious and crunchy peppers and eggplants! There are not many dishes that my picky eaters would eat, so I have no choice but to create custom made recipes. I aim to make sure that all my “creations” are as nutritious as possible. The secret is smuggling in some foods that kids would not otherwise touch, had they not been hidden inside the dish 🙂 For example, our scrambled eggs. I know plain eggs would not be much of nourishment, so I added some color and fun to it.
Here’s my recipe:
1-2 Tbsp Coconut oil or ghee (to grease the pan)
1 green pepper
1 red pepper
1 onion (or ½ onion and a handful of chives or spring onion)
Parsley (a handful)
1 tsp of turmeric
Salt and pepper
[Optionally I slice some turkey ham in for the kids]
I start with greasing the pan, add chopped onion, peppers (and turkey) and stir. Then add diced tomato and let it simmer together for a minute. In a separate cup I whisk 3 eggs, add salt, pepper and turmeric and then pour it into a pan to my vegetables. Cook till it’s golden and serve hot. It’s really tasty and different colors make it attractive to the eye :).
As for our smoothies, I started mixing and matching fruit and veggies that we never used before. Booboo loves new tastes. I love his cautious moves as he’s lifting the glass and inspects the drink – different smell, sometimes different texture and definitely all kinds of shades of green 🙂 So far his favorite is banana and kiwi smoothie:
8 oz (1 cup) of goat’s kefir
8 oz (1 cup) of freshly squeezed orange juice
1 kiwi fruit
A handful of fresh mint
1 tsp cinnamon
1 Tbsp of green booster powder (kale, spirulina, chlorella, wheatgrass)
2-3 Tbsp coconut oil
2 Tbsp of ground flaxseed
It’s so tasty and healthy too! Flaxseed works like a natural chelator – pulling out heavy metals from our system. Coconut oil delivers Lauric Acid, which kills harmful pathogens like bacteria, viruses and fungi. Same with green powder – too good not to take! Banana rich in potassium, kiwi in vitamin C, same with orange juice… You may add Manuka honey to sweeten your smoothie. We drink it in its original form though :).
Writing about food made me hungry. Time for some carrot sticks and sliced apples :).
Joy comes in the morning – September 16, 2016
It’s never easy to write about setbacks and disappointments, but the main goal of this diary is to keep it real. The last few days it’s been 1:0 for Autism, or more like 3:0! More aggressive behaviors (inappropriate laughter, screaming, biting – himself and us, etc.). As usual, I am trying to analyze what we did that was different, what food he had that he shouldn’t, what social and environmental changes happened. All I can think of is Booboo’s favorite snack pomelo skins. I was getting them from organic and health food section in our market. Yesterday I found out they are loaded with sugar and E preservatives. Fantastic! No more junk! It’s hard to fathom for me that so called organic foods are no longer pure and natural, but polluted like the rest of foods available these days. Unacceptable!!!
The other factor that probably plays a bigger role in changed behavioral pattern is messed up routine – grandparents are not around anymore, food is prepared my way, not like Yiayia’s, and no school with peers. I don’t want to continue homeschooling, as I know Booboo needs a properly structured school program/ center with different kids, teachers, therapies and lessons. It’s not fair for him to stay home, cooped up all day. It was supposed to be a temporary solution, till we move across the big pond 🙂 I still hope it’s going to happen soon, but we need to sell our properties first. Very frustrating time, but as always, we trust the Lord with the outcome…
Yesterday we had a great few moments – I started my fitness regime 🙂 And as I was doing boot camp warm-up, I saw Booboo watching me intently. So I told him to join me. He was laughing, very happy… He was jumping around me, hopping nonstop. Instead of making him move, so I could continue my side kicks and punches (in the air), I joined his fitness routine. Oh boy, how much fun! For good half an hour we were hopping around the table and living room 🙂 My abs hurt more than my legs.
Today he’s been inconsolable… But it’s only mid afternoon 🙂 I am sure we will have a peaceful evening and sweet night rest. I just need to remember that joy comes in the morning!
When you know but they don’t want to know – September 16, 2016
The other day, when I took Mom to a hairdresser, I was sitting there having a coffee, waiting. I noticed a man with a young boy in the “men” section of the salon. As he had his hair and beard trimmed, his little boy was wandering around the place… Both Yiayia Bear and I immediately noticed odd behavior of this child. He must have been 2 – 3 years old max. His father didn’t seem to be bothered much that the boy was desperate to get outside (salon is by the main street with busy traffic). As you can imagine, my autism mama bear’s instincts kicked in. I was guarding the door like a hawk. Other clients were coming in and out, so I had to physically block the little dude. I was asking him about his name and saying hello in Greek (he was a local for sure), he would not acknowledge me. No eye contact, advanced pika L Poor thing was grabbing whatever was reachable on his level (hair products, sofa armchairs, brushes etc) and putting everything in his mouth. That was really grieving my heart. I know his parents most probably don’t see any problem, like most people in Cyprus. “Autism is something that silly Americans invented to excuse their brats behaving badly at school”, etc. I’ve heard it all! When the father came to reception to pay for the service, his son was chewing on a flat can of hair gel… He just whacked little guy’s hand, pulling the product away, and then just grabbed his arm and dragged him towards reception, growling something in Greek. When he noticed I was there, he played it cool – lifted the boy, kissed him and held in his arms. But he did not smile, did not check who was lifting him, no reaction whatsoever. Then he started screaming because the hair gel was left behind, as they were leaving the salon…
The reason I mention this episode, is lack of autism awareness in Cyprus, and actually around the world. Many of APs (autism parents) and autistic adults can spot another autistic kid from a mile. I was struggling with conscience that day. That father surely is in denial that his boy is severely autistic. Should I say anything to him, knowing the early intervention could help his boy? But on the other hand, who am I to bring this up. The guy just came to have his hair done, right? Would I want some stranger come to me and mention that there may be something wrong with my boy? In my human nature, no! As a mother I want to believe that my kids are perfect, the best and absolutely immaculate. Don’t you dare be the “know it all” and tell me stuff like “hey, have you noticed your boy acts odd? Have you seen a psychologist to check what’s wrong with him?” and so on… Luckily or unluckily for me, I studied psychology and I was that person who first noticed autistic symptoms in our Booboo and pointed them to the family (read my first blog on that).
What do you do, when you know, that they don’t know and most likely they don’t want to know?!
The truth will set us free…
Kids are the best teachers – September 13, 2016
Sitting down and recalculating all the costs. Wondering if we’re heading the right direction with our decisions, in general… It’s been only a few days since Yiayia and Papa Bears left, but it feels like months. Because of their departure, I had no choice but to resign from my job and say bye to my awesome team and a very supportive boss. The options we had been left with were rather limited. As you know, our school told us that Booboo was not getting much out of academic program, because he’s been spending most of the time outside of the classroom. His stimming was distracting other students, but trying to stop him from doing that would trigger tantrums, ending in crying, screaming and “behavioral episodes” (biting, throwing things, etc.). We learned from other “au-some” people that letting kids stim is actually very good and natural. This is their way to calm themselves, especially during sensory overload ☺ I already wrote about the stimming in my other posts, so I won’t elaborate on it again.
Homeschooling is a bigger challenge than I thought. However today Booboo showed me the way he would like to be taught, and I will follow his guiding ☺ I was trying to make a schedule like they had at school last year. We started with writing and dictations. For Michael it was copying the words written down in a column. It was more of a fine motor skills exercise (holding a pen right, making sure all letters are the same size, etc). It got him so frustrated, borderline meltdown. He didn’t want to do that task. Once he calmed down, he was bringing me objects, looking in my eyes and asking to name them for him. He started repeating after me!!! I am not saying he’s a verbal child now, but he definitely is trying harder than ever. He has truly vast vocabulary. Even the other day when I was preparing our breakfast, he picked up an eggplant and looked, waiting for me to name it. I said “eggplant”, he kept on pushing the vegetable towards me till I said “aubergine”, and only then he left smirking. Little stinker was testing my vocabulary! Can you imagine? ☺
Today we’re doing reading, using our tablet ☺ He liked it, although I was doing the reading out loud and he was following text with his finger…
As for our healthier eating, we got back to goat’s kefir, added daily to our smoothies. Combined with coconut oil, flaxseed and green booster powder, cinnamon and turmeric it works like a gentle chelator ☺ I know I’m feeling better and more focused these days…
Looking forward to a big change! In general ☺
Memory Lane, Guardian Angels and a Runner – September 8, 2016
OK, Yiayia and Papa Bears are on their way to the good old USA. It feels kind of weird driving by their house and them not being there… I must say though, they had the best neighbors one could ever wish for! Super friendly, lovely people, always greeting us with a smile and a hand wave 🙂 They helped us search for Booboo when he went missing for 15 minutes or so, one April night in 2012. Daddy Bear and I were playing a concert in church and the kids came with Grand Bears to cheer for us. After the concert we had to stay and chat with some people who came to hear us. It was a great night! Kids were getting tired so Yiayia and Papa Bear took them home. Our baby girl was just a tiny little thing and Booboo was five. As they were all getting off the car, opening the house door, Booboo took off and started running away from the car as fast as he could. He’s always been a runner, always laughing, making us chase him. Problem is his lack of concept of danger. Grandparents’ house was near the busy highway… It was already dark past 9pm. Papa started chasing him as fast as he could but lost the sight of Booboo pretty quickly!
Yiayia had to stay behind with our little girl in the car seat, feeling terrified. As you can imagine, the fear and shock got a hold of them all. It was bad enough that Booboo ran away, but the fact that he’s non-verbal made things even worse. Back then he had sensory integration disorder, so car headlights would seem super bright and blinding, all the street noise louder than usual, and anyone trying to touch and ask him about his name, etc… Gosh, I can’t even imagine what my boy had experienced that night! While all this was happening, we were unaware chatting away with people that came to see us. You can imagine what we had felt when we pulled up to the house and saw neighbors with flashlights, Mom crying and comforting my boy on a swing, and Booboo just sobbing. I thought he hurt himself or something. I would never think something like this could ever happen to us. Well, it did. Dad told us that as he was walking down the streets calling for our boy, he was praying his heart out, begging God for mercy and to keep him safe. And then he saw two strangers, he never saw before or after that, who were walking Booboo towards him. How did they know which way to go and whom they should return Booboo to?
I believe it was yet another divine intervention, straight from Heaven. I do believe in guardian angels… I do believe though, that our Papa and Yiayia are the angels in disguise 🙂 We will miss them so much. But it’s time for another chapter and a new challenge! I know we CAN do it, with God’s help…
Oxymoron and mindfulness – September 6, 2016
4:45am I am being attacked by a drunk octopus looking for car keys (I saw the comparison somewhere on social media) aka Booboo Bear’s ever present legs and feet. It’s bad enough when infants do that, but when a 9 year old does – it hurts! And the surprise element adds the shock factor. Imagine enjoying your REM and some vivid dreams and whack! Here comes a foot made of lead, or so it feels like ☺
4:53am a skinny knee digs deep in my lower back, followed by a face slap… (I’m definitely awake now!)
4:55am precious cuddling and clinging to me… and as I tried to turn I felt his arm and head were resting comfortably on my hair, pulling it of course
5:10am after much thinking and considering all my moves not to wake up my M&Ms (Daddy and Booboo Bear), I concluded it would be best if I slept through the “night” in my boy’s bed. Hmmm… As soon as I lied down, I realized bed hinges badly needed some WD40 (grease that stops the squeaking)
5:12am I am finding myself on the couch downstairs. There is no way in the world I can go back to sleep now! Perfect opportunity to practice that transcendental meditation technique I’ve heard about. Sure, no biggy. I can repeat my mantra, as I have no issue with made up words that have no real meaning. Mhm… Problem is, my mind works in mysterious ways, so even a made up word is immediately transformed into some crazy image and gets a new meaning in my twisted brain. I tried, I guess my mind is too full to be mindful, of that makes sense ☺
6:08am I’m exhausted from thoughts marathon and “meditation” attempts. I’m sure I will give it another go. I mean I had a perfect environment – silence, solitude, darkened room… But all that my brain saw was light, funny comedy, and the most bizarre images. Too crazy to try to explain in words ☺
6:43am I am finally sleepy! All the other bears are upstairs snoozing away! Here’s my chance! Inhale, exhale… no thoughts, just falling asleep…
6:59am -Mama, what are you doing downstairs?
– I’m trying to sleep! Let’s play the quiet game! Person who speaks first loses…
– (whistling and humming)
– I said quiet, please!
– Haha! You lost! You said “who SPEAKS FIRST loses!” So, Mama… You know?
– Mama, you know, when we go to America, I will be helping you to grow our garden. I know how to put a seed in the soil. And you know? Mama? Mama? You know? I told my new best friend that we’re going to America
– What friend?
– I don’t know her name. The one I met in church the other day.
To make a story short – we all had quick breakfast, took our towels and drove to the beach. Believe it or not, that was actually where we had some peace ☺
My husband posted on his Facebook “…day off. Looking forward to some relaxation with the kids!”. I laughed out loud and wrote my comment below: “oxymoron”. No, I was not offending my husband calling him names ☺ Oxymoron is a figure of speech in which apparently contradictory terms appear in conjunction, like relaxation and kids, haha
Now looking forward to the day of adventure with Yiayia and Papa Bear, before they go back home…
The new beginnings…September 1, 2016
It’s been a very emotional day for me. Started off great, as I woke up seeing all the Bears together, sleeping in our bed 🙂 It’s something that no money can buy! It’s LOVE… I was thinking how quickly the time passes, and we tend to lose these precious moments due to a daily rush, chasing our own tails…
I guess I am more of a morning person 🙂 I do enjoy getting up early and starting my day right… Usually I don’t get much time alone, even in the mornings, as baby cubs follow me wherever I go 🙂 First thing that Booboo does, when he gets downstairs, is asking for his “ecine” (medicine) and then breakfast. We make our smoothies together, but every day I push him to do more things independently. We progressed from holding a bottle of almond milk together with me, to him opening the bottle and pouring milk in the blender all by himself. Again, parents of neuro-typical children will not relate as much as APs, but it’s a huge step in the right direction and brighter future.
Like I mentioned in my previous post, Booboo had some bad food recently, which still affects his GI tract. I believe he’s getting better but even last night he would be screaming while using the bathroom 🙁 I cannot stand tears running down his cheeks and a look expressing cry for help. I was comforting him and guiding him to stay calm and relax his abdominal muscles. Once he listened, he went straight to bed and fell asleep to Brahms music… There has to be a drastic change in our diet. Either we’re All-IN with this holistic therapy or we’re gonna play around hoping that somehow something will work. I know it was our fault to let him have these cookies at the picnic and some McD’s fries… We should have known better 🙁 We know now that there should be no “cheat” moments. Some may say it’s cruel and unfair to stop a baby from enjoying candy that other kids around him enjoy. Yes, it’s frustrating but who is being cruel here? I think being cruel is knowing that these foods are bad (for anyone, really!) and let him have them to enjoy the taste for a while, and agony that always follows… That is cruel. That’s not caring for what’s best. And as I mentioned in my interview, we agreed as a family, to have only food that Booboo is allowed to eat. This way there’s no frustration of being told “no” to the snacks that others enjoy and he can’t. That is also the reason I don’t like going to parties where kids are being served all unhealthy snacks and mountains of sweets – all filled with artificial coloring and flavors, gluten and who knows what else!
I am on a mission to get real and get my family back on track with what we eat! Today is the new beginning!
First radio show behind me… August 31, 2016
I’m so grateful for the opportunity I was given by Mr. Rula Brown and RBN News. I was able to share our story on the live radio show and shine some light on different treatments and therapies that have helped us in the past. I hope we encouraged some folks too, especially the ones that were new to their ASD diagnosis. You may listen to the entire interview here: https://www.youtube.com/watch?v=J-oikF1T-8o
While on air, I was asked a few questions by some listeners, which was great, because I wanted to hear from “real” people and APs (autism parents). I liked the fact that they expected straight answers, even to controversial topics, like vaccines, or how we deal with stress, discipline etc. It was very therapeutic for me 🙂
My family was asking me afterwards “so, how was it? Were you stressed?”. The truth is, at first I was. I was very conscious of my Polish accent and that it was a video chat! But both Rula and Keith Anthony (hosts of the show) made me feel relaxed and comfortable pretty quickly, reminding me why we were doing that interview in the first place. I may be shy and reserved but when it comes to Autism and my boy, Mama Bear awakens in me immediately, and I do roar 🙂
I’m glad I had a chance to direct listeners to a few great sources of information that helped us, on our journey (and are still a part of our daily research):
GAPS Diet by Dr. Natasha Campbell (http://www.doctor-natasha.com/)
Immunocal by Immunotec (glutathione) (http://www.immunotec.com/IRL/Public/en/USA/science_understanding.wcp?&site=corp )
Prof. Stephen Shore and music therapy
Mary McNicol and her book “How I cured my son of autism”
(you can order it on Amazon, clicking here: https://www.amazon.com/How-Cured-My-Son-Autism/dp/178148953X/ref=sr_1_1?ie=UTF8&qid=1472632393&sr=8-1&keywords=how+I+cured+my+son+of+autism) – it’s a “must read” piece of literature when you have a child on the spectrum!
Chris Bonello and Autistic Not weird (http://autisticnotweird.com/)
Regarding Booboo Bear and his thoughts on the whole idea of sharing his story with the world, we are in “agreement”. Yesterday, right after the show, I played a few minutes of my interview, explaining I was telling other people about him. How proud I was of him, and how happy to see the progress… I literally told Booboo “Mama was bragging on you” and he gave me the biggest and the most cheeky smile you can imagine 🙂
Update on behavior: Since Sunday (when we had a church picnic in the mountains and he ate a whole box of sugar loaded wheat cookies, full of artificial colorings and Es), his GI tract is in a mess. He’s having severe stomach cramps, again food is leaving his body undigested. Clearly guts are inflamed. So yeah, things we eat play a huge role in our over all health and well being. I know from experience it will take a few weeks till he gets back to normal…
I’m craving probiotics myself. Hmmm… Maybe it’s time to cook some traditional Polish bigos, or snack on some crispy and sour kraut? Yummy 🙂
Dear readers and guests of our website! Join the www.rulabrownnetwork.com on Tuesday 30th August, and welcome a special guest, one of our featured writers, Ula Hołub Tinsley MSc in social rehabilitation talking about her otherwise healthy son who was given MMR vaccine and after was diagnosed with autism. Ula Hołub Tinsley writes for www.icare4autism.org see also https://www.facebook.com/URSA.Constellation.of.Autism.Mama.Bear
Show goes live at 09.00am EST, 14.00 BST, 16.00 Cyprus with Rula Brown’s fabulous smooth reggae/soul selection and interview starts 90 minutes later.
Speech apps, music and my OCD…August 25, 2016
I was reading a lot about the latest apps for non-verbal kids and teens, enabling them to communicate and express their thoughts. It’s amazing how much it helps, not only the autistic children, but also their families and other people involved (therapists, teachers etc).
I should probably start an intensive course with our Booboo Bear, and teach him how to use the speech apps. After all, he understood the concept of PECS (picture exchange communication system) pretty quickly and noticed benefits of actually using it. I must say, I feel a bit lost in the virtual world of technology. There are so many apps to choose from. But how to know which one will actually work? As I am considering the idea of homeschooling (at least for a while), I do my private investigation and consult other brave Mama Bears/ Teachers who tried it and succeeded. There are so many great resources! All I need is a plan of action, discipline and patience. Hmmm…. I think I may be in trouble! I’m the most chaotic and unpredictable person on planet Earth 🙂 Yet I am so OCD – clutter drives me up the walls, or dishes in the sink… Or when I find TV remotes in strange locations of my house (kitchen counter, bathroom, etc). Don’t get me started on kids’ toys :). All in boxes, which are placed in strictly, designated areas… When I find a wrapping paper on the kitchen counter, just 2 steps away from the trash can, my head starts spinning and steam whistling from my ears! That’s unnecessary pressure. Why, oh why, would anyone do that!!! Ha ha ha. I believe, with ASD lifestyle, we have enough to get stressed about. We should therefore limit everything else that flares up our OCD, and live peacefully forevermore 🙂
Back to the subject of apps and technology, I recently talked to professor Steven Shore and we discussed benefits of modern day technology, and how it helps ASD community around the globe. And of course, as a major chatterbox, I also had to mention our plans for the nearest future and how we’d like to help our boy get more independent and less frustrated in life. Prof. Shore (the most patient man alive!) made a good point and suggested using Booboo’s new passion (tablet) for educational purposes. Let me explain through example. Our boy may not be focused enough to listen to the teacher and the instructions given in the classroom full of students and other distractions – sensory overload. But when the same lesson is given to him on a tablet, in a video, he might pay attention and do as instructed, just because it is brought to him through a channel he feels more comfortable with. Booboo always loved flash cards videos, alphabet songs, and now (thanks to his baby sister) silly videos of some random kids opening boxes with weird toys or playing with play-doh, or “cooking” suspicious looking meals etc… He’s very focused on everything the kids in the video do and say. There are many great ideas out there. All I need to do is apply them into our routine 🙂 Professor Shore also mentioned the science behind music – our brain’s wiring is different for speech and singing. Very often, non verbal kids discover that they can verbalize everything when they sing. Music/ melody stimulates different areas of the gray matter :). Makes sense. Even neuro-typical toddlers love rhyme songs because melody makes it easier to learn. Just a thought, eh? Love each and every one of you.
Please share your thoughts and comments, or word of advice by visiting my Facebook Page at: https://www.facebook.com/URSA.Constellation.of.Autism.Mama.Bear
I want to hear from you too 🙂
To discipline, or not to discipline – that is the question…- August 23, 2016
I’ve heard many opinions on disciplining your kids, especially the ones on the autism spectrum. We’ve tried it all… After all, when it comes to life and reality, kids need to know when they do something they are not supposed to. We always try to reason and explain why we have to punish them when they don’t obey etc. Screaming at them is the worst we, as parents, can do, yet, I admit, I am guilty of doing that in the past. When you’re tired of repeating over and over again “don’t do it! No!” and they do it anyway, you may occasionally lose it, right? I try to follow the example of Booboo’s therapist who is a walking example of patience. She Always keeps her voice in lower “frequencies”, and is always calm (even when inside she’s frustrated with his challenging behaviors). It works! He eventually calms down and tries to mimic the same tone and gets back to his tasks.
Even when he’s asking for his “medicine” and I don’t give it to him, his voice tends to get high pitched and shrilly. So I tell him softly “ask politely and quietly, like this: (and I show him what I mean)”. Believe it or not, he follows my lead! He then repeats his demand in a lower voice – more “mommy friendly” (Yes, I am very sensitive to high tones, therefore my car radio has bass turned up and high tones all the way down. Maybe that’s why I prefer “rusty” gospel music and never been a fan of crystal clear soprano voices?) 🙂
I must say, that Booboo’s been really sweet with his tablet recently, playing some games, listening to music, watching videos etc… It keeps him occupied and gives us a chance to sit down and enjoy our coffee, watch our favorite TV shows (The Office, with Steve Carell, of course!) or even read a book. I don’t want to jinx it, but we haven’t been able to enjoy “the normal” for ages. It is slowly changing for the better. Praise the Lord!
Speaking of changes, I am getting more and more anxious about our nearest future. Yiayia and Papa Bears are going back home, and we’re going to be here on our own. I know I have said it many times, but we’ve had it pretty easy when it comes to ASD reality because of their huge support and care. When we’re at work, kids are with loving grandparents who are looking after them better than we could ever do 🙂 Yiayia is a world class chef, cooking gourmet meals every single day, plus making sure our stinkers don’t look like little heathens covered in mud etc. So yeah, I am a bit stressed knowing they are leaving soon…
But as usual, I am ready for new challenges. And I am sure we’re going to be alright, with God’s grace. I am still waiting for a major breakthrough when it comes to Booboo’s speech. I am not throwing the towel in yet! We are just getting started! 🙂
Time of confession… who we really are, shhhhh 🙂 – August 18, 2016
OK, it’s time for another confession. Ah oh, right? What is she coming up with this time?! Well… You will (hopefully) understand my motives once you read what I have to say. So, without further ado…
When I was asked to write a column for iCare4Autism, I agreed it would be a form of a diary. And since I was going to share details of our daily life, I decided to change names of the “main characters”, except for my own. It was to protect the privacy of my family, who I mention in my blog all the time. It seemed like a brilliant plan, till I shared a few posts on my Facebook page (see the link, click and “like” – THANKS! ) https://www.facebook.com/URSA.Constellation.of.Autism.Mama.Bear/ ;
Many of my friends cheered for us and, of course, when they saw my first published articles, they commented with words of love and congrats to me and my boy, using his real name, not an alias I wanted to keep 🙂 I don’t approve of lying, but I didn’t consider writing about my kids and husband using their aliases, and not telling the truth. I am straightening things up now, since many of you already know the true identity of all of us, watch our crazy video blogs (vlogs) and love us despite our odds 🙂
My boy will be also featured in the upcoming book, written by a dear friend Chris Bonello (Autistic Not Weird – http://autisticnotweird.com/ – goldmine of info and support). The book’s title will be “What we love most about life” and it will be a compilation of quotes and short stories of kids on the spectrum. My son will be listed as Michael “Jake” Tinsley 🙂 So there you go.
I always wanted to have a son called Jacob, but when I was pregnant with my Booboo Bear and I heard Papa Bear teaching about the archangel Michael – the one like God, Booboo jumped in my womb and I knew that his name was to be Michael 🙂 We couldn’t choose a more appropriate name… He is the most angelic being I have ever met.
As for the rest of my crowd, I am proudly presenting Daddy Bear aka “Joseph” (real name Joseph Mark, but has always used Mark) and my crazy little girl who never stops talking and who is a rising YouTube star “Gracie” (real name Vivien Grace). Now you know us that much more.
My mission is not to become a celebrity, but to show people what real life with Autism is like. And that one should never ever lose hope. Because the best “cure” for any disorder is LOVE.
Geeeez Louise… I can’t believe I came out of the “privacy” closet, ha ha. I do hope you understand my reasoning behind my actions and will keep on reading my weekly updates 🙂
P.S. Michael is growing up! Last night he was crying from stomach pain. Asked for help. I suggested making our smoothie as it helps with digestion. He immediately calmed down and was so proud pouring all the ingredients into a blender, according to my instructions. And surely enough, pooped like a champ and had an awesome and relaxed evening 🙂
Stay classy, San Diego 🙂
He was wiping my tears away – August 16, 2016
Today I woke up pretty tired. OK, first of all it was very early in the morning (Booboo was up at 4:30am! and so was I). Secondly, I have been feeling discouraged lately. Not sure if it’s stress related or that my expectations are high regarding Booboo’s progress and recovery… I must say though, that yet again, on Sunday he was a little angel, enjoying being in church and around other people. He was drawing (now developed a new technique: drawing with eyes closed and head tilted to the back, then opening eyes and finishing the drawing in a more conventional way). We were so proud of him!
But then yesterday I picked up the kids from their grandparents and apparently Booboo did not have a good, easy day. When we got home, he was visibly upset. What made me cry was his “regression” in communication and behavior. He has been doing so well, forming words and practicing pronunciation of more difficult syllables… And yesterday, it was, what felt like 10 steps back – pulling my arm, whining, pushing me to the kitchen making me guess what he wanted etc. I felt very discouraged. What was different though was his EMPATHY!!! He saw my tears and got upset. Tried to wipe them off, not to see I was hurt. He was looking in my eyes for a good 20-30 seconds and changed his behavior. By the time Daddy Bear came home, he was calm and content watching some YouTube videos.
Again, he fell asleep flopping on our bed for like half an hour before eventually giving up the fight to stay awake 🙂 But as soon as I was up, I got very encouraging texts and messages from around the world, from people whose opinion I value a lot. I was reminded about God’s plan for our life, about how He’s using the “unworthy” and “unfit”, broken vessels to shine His light through us. I know there will be setbacks and slowing down in progress, but it’s good to have the army of friends who are always there for you, ready to remind you to shake the dust off your sandals and keep on fighting!
This morning, after having our smoothies, Booboo took his glass and washed it clean. He’s been doing that for a week now! On his own, without any prompts! I know he’s growing up and wants to let me know, he’s gonna be OK and independent one day.
As we grow older, I am thinking about our parents and grandparents… The circle of life. How they first looked after us and now it’s our turn to look after them. My husband asked me “who’s gonna look after us when we’re old?” and it stuck with me. I couldn’t sleep. I’m sure many APs (Autism Parents) have the same fear. First of all, will my kid be capable of living on his own. Secondly, who’s gonna look after him if something happens to us? We come to the “faith” factor again. We either believe or we don’t! I choose to believe that my son WILL be independent and capable of living on his own, enjoying life, like everyone else. He WILL recover from symptoms of autism, while he will never stop being autistic. That’s it! Plain and simple.
Do you believe?
Necessity is the mother of all inventions – August 12, 2016
The last few days have not been great. Thank you McD’s fries and New York Donuts :). Tell me there is no correlation between gut and brain! Ha! Booboo has been very “loud” and easily irritated. Going to bed screaming and throwing things. Tantrums leading to meltdowns, with tears and hyperventilation :(. Falling asleep clinging tight to my arm, crying… Today is finally a new day! Back to “normal”. He was very sweet this morning, asking for his “aecine” (read: medicine), smoothie and all the rest. Very obedient. No toilet accidents (tfu tfu tfu, not to jinx it!) and laughing at my slapstick comedy – me tripping over my own feet, or pretending I was about to fall on him. Somehow it tickles him to death.
Today is our Yiayia Bear’s birthday. We want it to be super special. Taking both grandparents out for a nice steak dinner. As usual, while booking the restaurant, Daddy Bear made sure we had a “private” section due to our “circumstances”. I am actually looking forward to it! I want our boy to experience as much of this world as possible, get comfortable with going out to public places, getting social interactions with strangers etc 🙂 OK, now that I actually wrote that, I am not so sure if him being comfortable with strangers is a good idea. After all they always give away free candy, which is so DELICIOUSSSSSS, yikes! I think I am a bit paranoid and overprotective. But in this day and age, it’s better to be safe than sorry. Sadly many kids on the spectrum, not only non-verbal, are an easy target for predators and bullies. I have difficulty finding mercy for these kind of people. Plus sugar from the creeper’s candy is not a good idea anyway 😉
Speaking of sweet treats, Booboo loves my “Nuttela”. I basically blend almond flour or almond butter with dried dates (previously soaked in water to make them softer), add raw cocoa powder, honey and a drop of vanilla. It’s super tasty!!! He could easily eat it with a spoon 🙂 I like it too. I made my first jar by accident. I was making vegan bon bons and added too much honey and oily almond butter, so it was too “watery” to form truffles. And Booboo grabbed a handful, eating it as if there was no tomorrow… So there you go! Best inventions happen by accident 🙂 Newton and apple. Or was it William Tell? 🙂 Kidding kidding… It was Even and the garden of Eden, I know, ha ha :).
In Poland we have a proverb/ saying: Necessity is the mother of all inventions. I can see that more and more, as we cruise through this au-some adventure called life with Autism.
Ignorant mockers vs Au-some fighters – August 5, 2016
Another heatwave in Cyprus 🙁 Everyone is feeling weak and lazy… The world seems to be rolling in slow motion over here. I honestly prefer cold weather to the Summer heat. But not our Booboo 🙂 He thrives in it! He doesn’t mind shimmering air from the heat! You know, the mirage thing… I admit, it is kind of fascinating. Physics! But I am more of a polar bear – born and raised in Poland – country of proper, snowy and frosty winters and all four seasons. Here I feel like a zoo attraction, haha. Cyprus is a beautiful island with 300 days of Summer!
Since our little man loves water and swimming, it seems like a dream place for us, right? I guess sometimes I forget how blessed we really are. We live 5 minutes away from the beautiful beach! We can drive across the island in a few hours – everything seems to be in close proximity. Not like in Poland or America 🙂 Booboo Bear is reminding us that we should be more grateful for the small things. After all, the fact that we wake up in the morning is a blessing and an opportunity to do greater things. Life is a lesson! We cannot possibly move forward unless we “pass” the exam, proving to God that we had truly learned everything, right?
Update on our treatment: We are taking our magic smoothies every single day, with an exception of a few individual cases when we ran out of bananas 🙂 Booboo is improving a lot! He sat through the entire church service again, being sweet, drawing butterflies and looking me in the eyes. Our congregation noticed the difference in him too 🙂 And that’s just the beginning of our journey! On Monday we added B-Complex to his protocol, hoping to see even more positive changes. So, to sum up, we’re drinking Immunocal (glutathione) shake as our starter, then our smoothies (banana + other fruit/ veggies + coconut oil + cinammon or turmeric + ground flaxseed + green booster powder), followed by B-Complex. Later in the day Booboo gets his probiotics (3 billion active cultures), fish oil (1,000mg) and milk thistle drink. He is asking for his “medicine” when I forget to give it to him, because he can feel the difference when taking it.
Many so-called “know it all”s, even some of our friends, who don’t have anyone on the Autism Spectrum, mock our work and all bio-medical approaches, saying it’s all bogus and myth! I try to find inner zen not to argue with their narrow minds. I am happy they have healthy kids and don’t need to go through things and research that we have to. But I know what is working for us and I have data to back it up! Of course, I need to put a disclaimer here that I am not a medical professional, therefore I cannot advise others to use our protocol without previous consult from your doctor. I do, however, recommend finding a reliable ND (Naturopathic Doctor), who could prepare a program suitable for your child’s individualized needs.
Remember to never give up and to fight the good fight, even if it feels like you’re on your own in a big, loud crowd of mockers! They don’t know the battle you’re facing every single day 🙂 God bless you au-some APs and ASD kiddos.
Cruising for bruising 🙂 – August 3, 2016
We did it! We made it! We loved it! Grandma Bear’s birthday celebration completed successfully 🙂 First of all, it was a long ride to the marina (around 1.5 hour drive from our home), then waiting in a queue to get on board… Being with my Mom is simply impossible to be late, ha ha. Try and you will never want to be late again 🙂 Yesterday was simply magical. And because we came almost an hour early prior to the cruise, we got to choose the best seats! It pays off to be punctual. Thank you, Grandma Bear! It gave us time and privacy to help Booboo adjust to the new environment and settle down. He was a perfect little gentleman. Sitting on the bench, enduring the painful loud music blaring from the speakers, and all the noise of other people talking, laughing and engines roaring… I was so proud of him! The heat was unbearable but we made it through! As anchored in Blue Lagoon, Booboo got new wave of energy and was ready to jump in the clear blue waters to be free at last! Doing what he loves the most.
It was 8 of us in total and neither me, nor my Mom are great swimmers. So we asked the crew for some vests for us… just so that we could feel more confident. Oh my! Daddy Bear and Booboo were already swimming away from the crowd, enjoying the refreshing pool. But then I realized the armbands were off and Booboo Bear was swimming like a puppy, all alone. It is his daddy’s idea of “let the boy grow up!” So here I was rumbling through the lower deck, making sure my baby girl had her “floaties” on and my Mom was properly fastened in her vest, while trying to figure out “the system” for us to climb down the ladder… My husband was watching this slapstick comedy show called “Here comes Ula”. I decided to go in first, then my little one and Mom as the last one in. Once Gracie was in, she started swimming away, towards her Daddy. I started freaking out as the stupid vest was coming up to my chin, flipping my body upside down. Yes, I panicked and started hyperventilating. I saw my poor Mom trying to look cool while her legs where in the air and face down in the water. I was like a nerve ball, shouting “I have to save my Mom!” People didn’t care, minding their own business. I thought I would have a heart attack! Vest was slowing me down and forcing me to float on my back, pushing my torso up. I did NOT want that! It took us a few minutes to realize we were not going to drown and my sister (voice of reason, aka our personal life guard) took over mission “rescue Mom”. I’ve never laughed so hard in my life. Not at first, but once the stress level dropped, we enjoyed the comedy of it all.
Booboo was in heaven! After we came back home, had a birthday cake and some ice cream, he just enjoyed being around his cousins and family. It WAS the best escapade ever!
Music – The Gateway to Communication – July 29,2016
Lately I’ve been reading more about music therapy and about a huge role that music plays in language development. It makes perfect sense! I remember when Booboo was making first sounds and studying my face intently, trying to copy my mouth movements to pronounce the words (he’s been doing that again! Hallelujah!!!). He would start singing (repeating melody after hearing a new song for the first time – perfect musical ear!). And yes, he’d start using words more easily if they were part of the “song lyrics”. Pretty amazing, when you think about it! Here’s a link to one story of a non verbal young man who had no problems pronouncing the words while singing, yet not able to speak otherwise. http://www.dailymail.co.uk/news/article-2598153/Autistic-man-hardly-spoken-entire-life-stunned-family-SINGING-released-album.html
The more I study this subject, the more I realize the importance of music in our home. We always have music playing in the house somewhere. Kids go to sleep listening to the classical music lullabies, etc. We play our favorite songs in the car and sing a lot… Sometimes the only way to get our message across to our kids is through “singing” the message to a familiar melody. Music is in our blood! I guess I just had one of these “duh!” moments. I am going to use all the patience I have to teach my little cubs to play some instruments.
Today I was reading some articles by professor Stephen Shore and listening to some of his interviews. Once again it’s all about the importance of music, especially in the autism world. Like he said, music is a gateway to communication! I am over the moon that our boy is singing again, but it’s more of a humming than singing with lyrics. I do believe however that the day will come, when he WILL start expressing his thoughts and emotions through songs AND lyrics.
By the way, thank you all for the very warm feedback on my previous post about autism parenting 😉 I’ve never seen so many likes and shares on my Facebook Page! Keep spreading the word, folks! The more we talk about autism, the more people learn about it and accept it!
Autism parenting is a 24/7 job with no toilet breaks – July 26, 2016
Looking back and remembering the stress levels we had been experiencing (not too long ago!) and comparing to how we feel now… Huge difference! You know, with an ASD child you can never rest. Being home alone with kids was a pure anxiety nightmare for me. I could not even get 30 seconds to use the bathroom, without Booboo doing something mischievous or dangerous. He’d be running to the door and trying to unlock them. Or climb the bookshelves, which were already unbolted (due to renovation project!). Very often I would have to just lock him in the bathroom with me, holding one of his hands, so he wouldn’t grab and eat the hand soap standing on the sink or scrape caulk from the wall or floor tiles. Forget about going to the kitchen and making some dinner! Impossible even to put the kettle on and get myself a cup of coffee… Sounds familiar?
Every other week Daddy Bear has the afternoon shift, working till 8pm, so that means I get to pick up the kids from grandparents and babysit till he comes home. Yes, in neurotypical families you get some quick meal prepared, call kids to wash their hands and sit them around the table while serving them their dinner. In our household (till last month!), I was grabbing Booboo’s hand while getting off the car, making sure he wouldn’t just run to the busy street or the back yard where we have a communal pool! Then, still holding his tiny hand in a rather firm grip, I’d be frantically digging in my purse trying to find the house keys. No biggy, right? Well, not in our case. Poor Gracie is my little soldier. I love her so much! She’s very mature for her age and responsible too! She knows that first thing after getting in is to check all the doors and make sure they are locked. She runs in, does her inspection tour in a split second and gives me thumbs up. Only then I can release Booboo’s hand and let him get in the room.
As you can imagine, getting some food prepared or bringing anything from the kitchen was very difficult. Not anymore!
It struck me today as I was driving to work. The last couple of weeks I was able to prepare some food for kids when they asked for an apple or sandwich, even managed to boil water for my ACV with honey hot drink and Gracie’s chocolate milk!!! Jake has been virtually calmer and more “responsible”, alert and just sweeter. I don’t dread being home alone with them anymore. I can take a few minute break without fear of coming back into a room and finding severely injured children or furniture being turned upside down 🙂
My research on glutathione enriched smoothies is not complete yet but I am collecting data recording bowel movements, behaviors, sleeping routine, etc…
More updates will follow soon so stayed tuned! 🙂
The night routine – July 21st, 2016
You know how important having a routine and a schedule is in the Autism world, right? I know it too, yet we have never got to preparing a proper one, that we could follow. It’s been only 6 years since our first diagnosis. So no biggy 🙂 I know, I’ve never claimed to be perfect… But you know what? Our lack of routine became a “training” session to help Booboo adapt to spontaneous changes of plans etc. Yes, in the beginning we had tons of tantrums and frustration coming from both him and us, but look at him now! He still gets disappointed, but only when we promise “OK, we’ll do this and that” and then we don’t. But in all fairness, no one likes to keep their hopes up and then being faced with a “sorry, another time!”, right?
Booboo’s new thing is putting the arm bands on, waiting patiently without making too much fuss. He just doesn’t want to hear the “no!” when it comes to swimming. Alas, we need to work, so morning swims are rather impossible. Nevertheless, he is determined and tries to charm us every single day, hoping that maybe today would be the day 🙂 Right now, that he’s trying to talk more (still not clear pronunciation), he uses only 2 PECS pictures: I want swimming pool and I want sleep. It’s precious. Regarding sleeping routine – he’s still falling asleep in our bed, and his baby sister joined the club. So we’re ending up all together watching “The Cosby Show” (we’re on season 4 now!). It’s our Summer-Out-Of-Sync routine. I know we will eventually need to break it and introduce some discipline… But not today. Not yet. I want to enjoy it while we can.
We’re now four weeks on Immunocal (our special addition to the heavenly smoothies) and we’ve doubled the dosage for Booboo. Both kids enjoy it! Do we see more improvement? Well… yes! Our boy “practices” talking whenever possible. We’re encouraging him to try harder to pronounce words more clearly, when he’s asking for things. And he does! Slowly slowly… We’re moving forward.
Have I told you I would love to have a farm and grow my own organic produce? I know, random! But I warned you, I may have in-diagnosed ADD after all 🙂
When the blonde moments happen to natural brunettes – July 14th,2016
I had very little sleep last night; I was too excited! After 3 hours of talking to the author of “How I Cured My Son of Autism”, I went upstairs and started going through the book again. Before I knew it it was past 1am. Of course Booboo was fast asleep in our bed. I was too tired to take him to his bed, so I just pushed him off my space, towards daddy’s back. They both growled with disapproval, which I chose to interpret as “love you, happy to see you, missed you”… It helped me fall asleep in a better mood, so don’t judge 🙂
Next thing I know, the alarm clock is really pushing its luck by going off at the least appropriate time. Do you ever feel like going back to sleep to finish an interesting dream? Well, I do. But not today. Instead, I went downstairs, prepared a delicious smoothie for my people, packed healthy snack packs for work and sent Daddy Bear with cubs to their grandparents. Rushing to get ready myself, I had to go back in the house, grab some cats’ food and feed the flock (Bonnie Bonita is temporarily fostered by Yiayia and Papa Bears because our house is a construction zone at the moment). Running late for work, I just got in the car and drove off. It’s a new car and doesn’t indicate when things happen (like petrol running alarmingly low!). Yes, I had a major blonde moment… First, the air conditioner stopped working and I had hot air blowing in my face – ahhh refreshing!!!, then my car was “choking” and slowing down, despite my desperate attempts to press the gas pedal all the way down… Oh boy! The most embarrassing thing ever. As other drivers were passing me by, looking angry, I was just hiding behind a “blonde card”, smiling with an apologetic look on my face. Yup, you can’t make these things up, eh? At least I made some people laugh today…
Speaking of laughing – Booboo Bear is really cute these days. He’s so smart and witty, making me giggle a lot. And his eye contact has improved drastically. I don’t want to get too excited but it’s in my nature! I feel like dancing and celebrating every small step of my boy! It’s the best reward a warrior mother can get!
Looking forward to see what the future holds for us… I’m walking on sunshine, woo hoo!
Non-verbal becoming verbal!!!
Woke up this morning faster than my brain 🙂 Alarm went off and my body responded with immediate “report for duty” position – like a soldier jumping out of the bed when his commander walks in, barking orders. Mistake! Dizziness got me in its claws, knocking me out.
I then realized there were two other bodies in my bed. Yes, Daddy and Booboo Bear. I must have slept heavy because I honestly don’t have a clue when he managed to sneak in, unnoticed. I know we need to do something about it. Still not sure if he sleeps in our bed because he needs our comfort or he simply prefers our king size bed 🙂 In any case, the time has come to get the shift schedule back on – one night I would be dragging him down to his bed, and another night it would fall on Daddy’s shoulders.
Regarding our diet, we had a small slip with McD’s fries combined with soap bubble mix, which Booboo ingested in one big gulp. Yup, we had almost immediate reaction from his bowels 🙂 That again proves the theory about the gut-brain connection. I just wanna eat healthy and get my family on the right track with me. Glutathione enriched smoothies are now an integral part of our daily routine.
Friends who don’t see our boy on daily basis noticed a huge progress. Even we notice it – he’s now more attentive, enjoys “talking”, singing and our amateur speech therapy. I am just trying to make it fun for him and he loves it! He answers questions correct, responds to commands like “where’s your nose?” and he points to his nose while saying the word “nose” (some words are coming out really clear! Praise the Lord!). I even asked him “what’s MY name?” and he said without thinking twice “Ula Holub-Tinsley”. Yup, just like that! My non-verbal genius is trying to speak. I got my joy back. It almost feels like the pre-vaccination times, where he was just a happy, vocal little dude, loving life and showing off with new words he would learn. We’re getting there! I don’t want to rush the progress, but I can’t wait to see more!
On a completely different note, if I had a “live” webinar/ online meeting room, would you be interested to tune in and chat together? 🙂 As usual, looking forward to your comments and ideas. Please remember to check out my Facebook page too at https://www.facebook.com/URSA.Constellation.of.Autism.Mama.Bear/
Love each and every one of you.
As an awesome song by Journey says: “DON’T STOP BELIEVING!”
Catamaran cruise and the voice of reason – July 7, 2016
I’m trying to let go of my fear, anger, and worry… Let me start over, so you understand where I’m coming from 🙂 My mom’s birthday is around the corner and I was assigned to think of “something nice”, so all the grandkids could be together, have fun and it would be unforgettable to us all, both kids and adults. Me and event planning? Ha ha ha… Are you sure you want ME to be in charge of this task? Well, I am getting focused on smallest details and forget things like inviting guests or baking a cake, etc. Yup, true story 🙂 I didn’t even plan my own wedding – way too overwhelming for my anxiety.
OK, I may have ADD after all 🙂 Where was I going with this introduction? Oh yeah, I am not a good event planner. But even more so, I am not a chillaxed mommy who spontaneously takes kids to the Summer camps, river kayaking, rock climbing and so on. Gazillion thoughts and projections of the worst case scenarios always run through my head. I visualize tons of people (as you already know, I am not a big fan of being in places with many strangers and yet I am sort of a social butterfly – paradox!), I picture our boy feeling even more anxious than me, and ending up with a full blown meltdown, which would definitely get attention of the crowd. Of course then it would trigger the “ready to defend my cub” mode and I’d turn from URSA (Mama Bear) to a “flames in my eyes”, growling grizzly…
My awesome colleagues, who I tend to call the “voice of reason”, hear out my confessions every now and then, and then come up with useful tips. Seriously, you can find pieces of wisdom everywhere, if you open yourself up to receive it 🙂 Anita (who is a walking search engine, that’s why we call her “Anita dot com”) gave me a brilliant idea to take my family on a catamaran day-long cruise – Mediterranean Sea, Summer, Booboo loving swimming, sun etc… My first reaction was “WOW! Yes!” and then my URSA mode kicked in, ha ha. I was trying to play this scenario in my head – waiting in the heat to board the catamaran with complete strangers, getting on board, Booboo seeing food buffet and running to grab some of the deserts, us chasing him to prevent the drama, then him losing it and bursting with tantrum, co-passengers (highly possible autism unaware) staring and murmuring… me grinding my teeth and attacking the onlookers with my flaming eyes, etc… You get the picture. Anita (love her calm and reasonable mind) reminded me I wouldn’t be alone there, that my husband would surely hold Booboo safe and we could entertain him, if needed. Besides he would be on the boat, surrounded by the sea, which is his second biggest love (after me, of course 🙂 ) and there would be stops to jump in the beautiful clear waters to swim! And in case of emergency they would have a small boat to escort us to the shore… She covered all my objections. I cannot believe it but I am getting excited about going on this cruise and letting go of my tension. So there you go, we may actually go and have fun as a family, celebrating my mom’s birthday 🙂
I was wondering if any of you was ever going through the same battle of thoughts in your head… I’m dying to hear your feedback!
Non-verbal autistics & bullying
I was just reading an article on bullying the non-verbal boy. His dad noticed odd behaviors and more than usual anxiety, after the boy was coming home from school. So one day he decided to place a recording device in his son’s pocket as he sent him off to school. After the boy came back home, father pressed play button and was terrified to hear all the abuse. Basically all day his son was treated with no dignity, even the teacher was calling him names 🙁 My heart broke as I was reading it… As a mom of a non-verbal boy, who doesn’t realize the danger of running away from home or school onto a busy street etc, I immediately empathized with that family. I cannot imagine such abuse or bullying, but I am sure it is more common than we realize. Sadly, non-verbal autistics are much “easier” target, therefore it is so important to educate not only teachers, medical professionals or any public officers. But teach parents, so they could teach their children and raise autism awareness and acceptance. It is SO important!
Alas, nowadays teachers have no say in disciplining unruly students, because kids are allowed and, I would dare to say, encouraged to be little arrogant brats. “Know your rights, don’t let Mr. so and so tell you what you need. He’s not your father. If he says this and that, you can sue him for being a… (you name it!)”.
That’s not the worst! I’ve noticed how some parents talk in a derogative way about anyone that’s different. That is not the way to raise a noble generation. That’s a path to destruction and hate! Being a parent carries a lot of responsibility, not only to assure your child is fed, healthy and well educated. It’s about teaching them morals, universal values and respect for others.
I am scared of sending Booboo to public school. We were blessed with an amazing school here, but what will we need to face when it’s time to go to junior high or university? [YES! I am that optimistic about my boy getting a degree in a field he shows passion for (most probably engineering and maths)]. High school is tough enough for neurotypical kids. Imagine how hard it must be for non-verbal and socially awkward individual?
It’s not too late to raise a generation of heroes and defenders of others. Lest we take initiative and teach our kids by our own example, it will get only worse. Do you agree? What example do you give your kids?
Hilarious recount of one Wednesday night
First week of Glutathione enriched smoothies is behind us 🙂
Do I see any difference? Yes! Booboo’s bowels are working beautifully. First 2-3 days were a bit “sulfur-ish”… pardon my description 🙂 ever since I was pregnant with Booboo, I developed this sensitivity to certain smells. I get nauseous when I smell scrambled eggs, AXE men’s deodorant and sulfur 🙂
Naturally, I was curious to see, if his number two was looking better and also to make sure he would follow “toilet steps” (use the toilet, wipe, pull your pants up, flush, wash your hands, dry with towel). So I went in the bathroom and gagged. Oh my! Brrr… Once I caught some oxygen back, I saw the treatment was doing its job. Perfectly healthy bowel movement. It’s only one week and Booboo Bear is pronouncing words more clearly. Still not comprehensive enough but we’re very hopeful. Last week, when asking for swimming pool, he would say “i gho heeho”. Today he brought his PECS sentence strip and said “I gho seem po” – much closer to swimming pool than heeho 🙂 I am really impressed.
I lost count on how many weeks we’ve been on our kefir – coconut oil – flaxseed and green powder smoothies… Now it’s our routine! Before we have our breakfast or morning coffee, first thing is our magic drink (now with Immunocal added – but not blended in a blender, only stirred in a glass before consumption). We are all taking it and feeling the difference. Looking forward to complete healing.
Speaking of gastrointestinal issues makes me think of one funny event. I think it was 3 years ago. My husband, Booboo and me went to church together. It was a Wednesday night Bible study and prayer meeting. Our dear friend (adult with Autism) came too. Since it was just the four of us, we decided to hold a meeting in a church nursery, so that Booboo can play and run in a safe, controlled environment while we study and pray. It was a great idea. As we were reading and discussing the verses, we heard something coming from the sanctuary, which was on the other side of the wall from us.
Joseph stepped out to check what was happening in there and disappeared for a while. In the meantime, Booboo felt the urge to use the toilet. And noticing small green potty (used for nursery children), he dropped his pants and more 🙂 Yup, no problem for him. He felt comfortable enough to just go for it. Our friend was not bothered with that either. Just the opposite. He said it was easier to examine my boy’s number two this way.
So what did we do? After cleaning Booboo, we both knelt down and bent over the potty, as he was explaining what different parts of the “finding” meant 🙂 My husband came back from sanctuary with a shocked look on his face. What on earth are you doing sitting around the potty?!”. After explaining that Paul was helping me understand the biochemistry of Jake’s bowel movement and suggesting how we could improve his digestion, Joseph nodded pretending to understand, yet still visibly disturbed. Then he stated “The noise we heard was God’s power”.
“Wow, he’s talking in symbols now.” – I thought. “Sure there is God’s power when people pray!” – I said. To which he replied: “No, no, I meant Godspower [Nigerian brother] is praying in the sanctuary”. When we came to Mom and Dad to pick up our baby girl, and they asked “how was the church tonight?”, Joe replied: “It was special! We held a meeting in the nursery, so Booboo could participate. Then we heard a noise in sanctuary, so I went to check. I come back and saw Ula and Paul kneeling down and looking intensely into a potty.
Then I see there was actually a “content” in the potty! Oh well, typical Wednesday night, right?”. Dad then asked who attended the meeting, so we explained it was just us 4 and then God’s power showed up. Dad replied with “Hallelujah!”. Amen, right? But then we had to clarify Godspower is actually a name of our brother from Nigeria. So there you go. There is always something colorful in Autism World.
And yes, I am proud my church family is very Autism Embracing and more Aware 🙂
Swimming therapy and natural vitamin D
Swimming is what helps us get through the Summer months. Especially since the kids’ school year is about finished. Yesterday was another holiday in Cyprus! Multum of human population flooded the beaches. We went too, but we went fairly early and stayed till 10, before the sun really burns 🙂 Booboo was so excited in the car, as we were driving through the familiar neighborhood and he saw the sea. He was saying “I want swimming pool” (Mediterranean Sea is just another pool in his eyes). Funny enough, when he wants something that much, he is willing to pronounce words more clearly. He didn’t mind repeating after me the correct words. His mind was set on the water. Honestly, he could barely sit still 🙂
As soon as we arrived to the beach (yes, we’re blessed with living 5 minutes away from one of the most beautiful beaches in the island), we parked our car and walked down to the water. Booboo didn’t mind walking through the stony path (btw, these tiny pebbles can be a killer when exposed to sun for a longer period of time, like walking on a bumpy and very wobbly frying pan). Once we were in, it felt so good. Boys immediately swam into the deep end away from the shore, while I and Little Miss Panic stayed in the shallow waters. OK, she’s got it after me – I can swim alright as long as I know there’s a ground underneath me, and in case I would need a break, I can stop and stand up. One of my silly fears 🙂 I can swim in Olympic pools back and forth without stopping, but only because I know how deep it is and where to swim to rest 🙂
Of course it always is hilarious when I go to the beach. You remember the song “Itsy Bitsy”? Yup, that’s about me. I love swimming in the sea but wouldn’t mind going there at 6am, when everyone is still in bed. I just don’t like being around other people, sitting in the same “pool” of water with me, unless they are far far away, ha ha. So yeah, we don’t spend all day at the beach, just frying and asking heaven “why? why is it so hot?”. It’s because we know, ha ha. Best source of vitamin D is from the sun exposure but only until 10am and then from 5pm onward. I will shock some of you, but we do NOT use sun screens on our skin, although we are extremely pale looking folks 🙂
The reason why is if you put sun cream, first of all it is filled with toxic chemicals and you apply it to your biggest organ (skin), through which it travels to your bloodstream etc. Secondly, it prevents vitamin D absorption. And thirdly, it does not protect you from skin cancer. Read more on that in these articles:
Once again, if you would like to see some of our “home” videos and updates on autism diets, please check out and “Like” my Facebook Page: https://www.facebook.com/URSA.Constellation.of.Autism.Mama.Bear/
Till next time! Stay hydrated, folk
Allergy to olive trees
Here we go again! Dust, humidity and olive trees. Bleh! People look at me funny when I mention we were advised to move away from “Olive Gardens” where we live now, because of severe allergy to olive trees. As you may guess, I did my private investigation and research.
Came across a good article from a local newspaper. Here’s a short excerpt from it:
ONE in three children in Cyprus and the EU suffer from some form of allergy, with the condition rife at this time of year on the island due to an increase in olive pollen.
“Olive trees are this year producing more blossom, meaning pollen levels are higher than in the previous few years,” President of the Allergy Institute, Dr Andreas Liveris, said yesterday.
He warned that olive pollen was very aggressive and the symptoms it causes can be extremely uncomfortable.
“These include asthma and other respiratory problems, sneezing and runny and itchy eyes and noses,” he said.
Different types of allergic disorders include allergic rhinitis, hay fever, asthma, atopic dermatitis, eczema and other skin complaints, conjunctivitis, irritation of the eye, food and drug hypersensitivities and anaphylactic shock.
There you go! I knew it!
Poor Booboo Bear loves his morning and evening strolls through our village. He’s enjoying being in nature so much… Daddy Bear lets him be free – hands free. It’s better when I’m not with them because I have my panic attacks seeing Booboo running through the fields, and he’s super fast. I am worried about him running away and also about snakes, vipers and other scary creatures of the fields… Or crazy village dogs that scare the you know what out of me 🙂 They are not some small pooches, but big guard dogs that could easily snap our bones in half in one bite. One could think I am not a dog person reading my confessions. I can assure you I am! Love both dogs and cats. But cats are cleaner, ha ha.
The other day Booboo ran fast and tripped, scraping his knees, chest and a little bit of his forehead. Ouch! But after disinfecting the wounds, he shook off the shock and was ready for another walk a few hours later 🙂 So proud of him. We notice his sense of humor maturing. He knows exactly when we talk about his mischief, which seems to him like the funniest joke ever told.
Last night I decided to start “the rest of my life” again… Read: get back in shape, not only through healthy smoothies and eating right, but actually by getting up and doing some serious boot camp style workout! As I was half way through my squats I felt a 28 kilo (62 pounds) koala bear jumping on my back and clinging to me, wrapping his arms and legs around me. I could feel every single muscle in my body. My gluteus maximus was on fire! Feels good 🙂
Booboo is going through a phase of throwing different objects at us. Sometimes it’s a soft toy, sometimes his heavy metal airplanes (ouch!). I know he’s trying to get attention to engage us into something he does. Still trying to figure out how to teach him other ways… Scolding and shouting does NOT work (tried, failed, felt like the worst mother in the world. Never again, so help me God!).
Pictures and “social story” just made him laugh and the throwing of toys only increased. Don’t laugh, but I am considering throwing toys back at him 🙂 If you have any suggestions, please let me know…
Regarding our smoothie extravaganza, we are all hooked on it now. We cannot start our day properly without our drink 🙂
Do you think I have ADD?
My ranting on APs who bash biomedical treatments….June 9th, 2016
There’s so much on my mind these days. Looking into Son Rise program, reading success stories and any other reviews, interviews and so on…
This could be a great option for us. Especially now, that our biomedical treatment is in progress (Booboo’s getting rid of the toxins for sure!). I came across one blog written by a quite famous these days blogger, who was bashing biomedical and holistic approach (which, if you haven’t noticed yet, I am all for!). He wrote something about trying GFCF diet for 2 years, which his pocket now regrets, yet he never did. Because, as AP, he was willing to try anything to help his kid on the spectrum.
This made me go “ha!”. Studying in depth all about the gut and psychology syndrome (once again recommending books by Dr. Natasha Campbell) and holistic approach, I got irritated reading that post! It’s like having a broken leg with exposed wound and putting a plaster on a paper cut thumb! GFCF could have helped to some degree but it would not bring a major change (especially with classic severe autism), unless it came after thorough candida treatment, getting rid of parasites, detox from heavy metals, restoration of the gut through probiotics and fermented veggies… Only then GFCF diet could be beneficial.
But I believe that one should not get on this diet, unless there is diagnosed intolerance or sensitivity to gluten or caseine 🙂 Organic food does not cost more if bought in local farms etc. You can really make it work!
So when I hear APs “throwing their towel in” on biomedical treatments because plaster on a paper cut didn’t heal the broken leg makes me do a “facepalm” gesture 🙂
I wouldn’t be able to sleep at night if I didn’t write this post. Guys, biomedical treatments really work, if combined with other things, diets, restoration of digestive system, detoxification from heavy metals and parasites etc. But it’s a long process. Don’t give it up after a year or two! Healing may take very long, depending on the level of intoxication and severity of ASD in your child. I’m not saying you’re a bad parent if you don’t follow holistic protocols, but it will not have side effects if you give it a try. And potential benefits are mind blowing!
Of course I would still recommend tons of prayer and meditation, asking God to put these treatments into good use and help our children…
If you would like to follow my diet recipes please visit and like my Facebook page:
I really hope you do your own research and stick to the one that will work for your family 🙂
Be strong! Be wonderful! You rock!
Meditation, sand and romance…June 8th, 2016
Yesterday Daddy Bear and I had our romantic getaway (extended celebration of our 10th wedding anniversary). It was very special. We drove across the island, visited places that we haven’t been to in years… Relaxed in each other’s arm, warming our backs on the hot sand, listening to the sound of waves washing down the shore. I know, romantic blah blah blah, ha ha. My point is, that it’s very important for APs (autism parents) to be selfish occasionally and have a day off from everything and everyone.
It’s funny how alike we are with Joseph. We planned our day well… We ate delicious, though not very healthy, lunch at TGI’s, walked a lot, drove even more and ended up on the camp site by the beach. We took our bottles of water and walked along the shore. Once we found a beautiful and quiet spot, we rested there. It was a perfect little niche made of tall grass and reed. I could almost hear Mark’s thoughts regarding the ground we were about to rest upon 🙂 Yup, we both thought the same! “Let’s hope no one use this private getaway as a toilet”. You’re laughing now, but with my (and highly possible also my husband’s) OCD, I ended up inspecting the sand for about 5 minutes (digging in it with a stick, turning rocks upside down, smelling, looking from up close etc).
After we both agreed it looked clean, with much hesitation we had decided to stretch our backs and lay down on the sand, looking up in the beautiful blue sky. Waves, seagulls, wind… Perfect background for some meditation (prayer). We were quiet and looked focused. Then JMT broke the silence – “You’re still thinking about the sand, wondering if someone indeed used it as a toilet, aren’t you?”. Of course that was EXACTLY what I was thinking, so we both started laughing, got up, shook the sand off of our clothes and walked to the car.
As we were getting closer to our town, we got a text from Papa Bear that they had a pretty rough day with Booboo… It made us wonder what could had caused his inappropriate behavior. First of all, Jake was told he would be getting in a little inflatable pool – which would get him busy and happy for at least 2 hours. Alas! the weather in the island is unpredictable – not only there was a lot of dust in the air (allergy!!!) but also very strong wind. Since Booboo has just recently recovered from pneumonia, Yiayia Bear kept him home. Second trigger could be disappointment that we had left without him. He’s been enjoying being with us all together so much, that he’d be obeying my orders (fixing cushions on the couch, picking up toys, etc.). Trigger number three – diet. We’re not even halfway through our detox. Therefore die out symptoms might and most probably will increase, as more toxins will be pulled out from his bloodstream and his vital organs (brain!)…
So as you see, it’s not all rosy and sweet. Yes, we have our romance in the air, but the annoying side of ASD is outweighing it too. We’re not giving up on our dream yet!
We continue with the KFCO deliciousness. I believe it’s time to sprinkle it more with a fervent prayer over our little man.
He IS improving though… I can’t wait to read this post in a year time and smile saying “wow, it was only a year ago? Unbelievable change!”
Recipe for happiness and green smoothie… June 1st, 2016
Daddy Bear bringing kids in the house (Gracie fast asleep and Jacob just fast) ha ha
Kefir – Flaxseed – Coconut Oil Cleanse… May 31st, 2016
Ladies and gentlemen, we have noticed increased eye contact!
Booboo is asking verbally for things in a calmer tone. OK, he is still not talking with understandable words but he’s trying, and with my prompts to pronounce words more carefully, he does the best he can!
In general his behaviors improved. There’s much hyperactivity but no screaming or tantrums. He’s visibly getting better. We’re on day 4 of kefir/ flaxseed/ coconut oil cleanse. It’s helping us all. I must say, I experienced some die-out symptoms (headache, nausea, stomach cramps, nervousness, etc).
I know Booboo felt similar, if not worse, crying and hiding his head in the arms – pointing to headache and general feeling blah. But yesterday he was a lot better. I noticed his bowel movements are not yet what they should be, but at least it’s clear that his body is getting rid of some major inflammation and infection. Yeast / Candida Albicans as well as anything else that’s there and shouldn’t be 🙂
We will continue kefir/ flaxseed/ coconut oil cleanse for total of 3 weeks. From next week we’ll add Black Walnut with Cloves and Wormwood drops to the drink. It is known for its anti-fungal, anti-inflammatory and anti-parasites properties. We used to give it to him when he was younger. From week two we will also increase coconut oil and flaxseed in a drink. Right now we do 100ml of kefir with 1Tbsp of flaxseed flour and 1 Tbsp of coconut oil/ per person. OK, Daddy Bear and I get more than that 🙂
Last night Jake came to our bed crying. It was like 2am. More like whimpering than crying, with his little chin moving… He slipped in between me and Daddy Bear and wrapped himself around my arm. After a few minuted he was back to sleep. I know specialists don’t approve letting kids sleep in parents’ bed but how could we send him back to his bedroom, while all he needed was to be close to us and feel secure?
Sometimes (more like all the time!) we go with our intuition and go against standard rules. We “feel” our boy in different frequencies. The more interest into his “world” we show him, the more he opens up, letting us in. Bond is stronger than ever.
So many regrets though… I wish I knew all the things I know now, when he was much younger. But everything happens for a reason, and God does make all things beautiful, in His timing!
I forgot to mention, we had an amazing day in church – Jacob sat through the entire service (long singing, then preaching, then some fellowship – talking to other people and having a small snack together). He was drawing again!!! There were of course a few inappropriate laughs throughout the day, but over all – we’re talking about huge answer to prayers!
Faith factor is just as important in complete healing as the diet and therapy combined! Let me say it again, even if you don’t believe in God or struggle to pray, ask a local church community to pray for your child in faith. It does make a difference!
Coming out of the “A” cloud… May 26th, 2016
I am pleased to report that pneumonia is just a bad memory now. No more antibiotics for a while (touch wood!).
Not sure if it’s the increased dose of fish oil or Mg supplements with increased probiotics (to protect bowel and stomach lining damaged by antibiotics) but Booboo not only started drawing more, but also singing every single day!
He used to sing with me a lot and now it’s coming back! I’m so excited.
I also think I broke the “entrance” password into his world. One day, a few weeks ago, he kept on drumming the same rhythm over and over again. It was kind of like Morse code (long 1-2-3 then fast1-2-3, break and fast 1-2, which could translate to O,S,I – by the way, any idea what the author wanted to express by that? Ha ha).
As I started repeating his rhythm, Booboo immediately looked at me with the biggest smile ever! As if he said “Finally, you get my message”, which I didn’t, only the rhythm. Still trying to figure it all out. My brain is not 4D J
That rhythm (OSI) opened the door for me to have a closer walk with my boy. He’s hugging me and looking in my eyes so sweetly… I really feel he’s coming out of the “A” cloud, day by day.
The other night, as the whole family was in the living room, I started to read out loud an amazing book written by a very gifted lady, Mary McNicol “How I cured my son of autism”.
First of all, it’s the best book on this subject I’ve seen in a while. Secondly, Joseph and I were amazed how attentively Booboo was listening. We thought he lied down on the couch next to me because he was sleepy, but he wanted to be close to me to hear every word of the story!
Daddy Bear stopped me for a moment to explain to Jacob why we were reading this book and how we’re determined to help him get healthier, without losing his awesome and au-some personality. We don’t hate autism. Just the opposite. The more we learn about it, the more we experience it on daily basis, and the more adults on the spectrum we meet, the more amazed we are with autistic brains! OK, being socially backwards and sometimes being a total jerk is a part of it. But most of the characteristics are to be admired – purity of heart, treating a janitor with same respect as the CEO, being unable to lie, “feeling” the world around us and admiring the beauty of the sunset and dancing shadows on the wall, as the curtain moves… There’s so much to love about Autism! It’s not just tantrums and meltdowns, aggression and frustration.
I believe every autistic person has his/ her own access code but it’s up to us to desire to break it and enter into their world.
Glutathione, probiotics and marshmallows… May 24th, 2016
Pneumonia and side effects of sleep deprivation… May 19th, 2016
You are what you eat – Autism Diet… May 13th, 2016
As promised in one of my first blog entries, I will share with you “our” Autism diet. It was put together, tested and backed up with almost a decade long research by our dear friend, who cured himself not only from ASD but also cancer diagnosis. He had been modifying it, until he perfected it to the point it is now. When we followed his protocol over the summer of 2014, we saw huge improvement in Jake’s overall behaviors and focus. He was verbalizing his wants in a much calmer manner, he didn’t suffer from any digestive issues and he slept through the night without melatonin! So, without further ado, Autism Diet…
All food, ideally, to be organically farmed or wild.
Water for drinking & cooking to be carbon filtered.
All baking to be done in a pot with a lid at 160C max.
Salt – sea or mountain salt.
Cook in morning for whole day (I am still struggling with this one) 🙂 Food cooked earlier in day to be brought back to boil before eating. Food to be eaten warm, never too hot or cold.
Do not overeat! One large bowl max. per meal. Ensure the same quantity of food is eaten at each meal. Meals to be eaten on time or early, never late, in a quiet, relaxed environment, no reading/ TV and preferably in the company of others.
No mental activity immediately after food.
All vegetables must be fresh and firm with absolutely no sign of mold or even softness. Peel all vegetables where possible if any chance of pesticides etc. Use sea vegetables if available.
Essential daily components:
1. Protein – it is essential that protein is consumed for breakfast!
2. Bone broth– simmer very low cut bone, cartilage, tendon, skin (e.g. spine, feet, ears, tail, head, knuckle, rib, neck) & salt for 48hrs, strain, leave liquid to cool & store in fridge for 1 week or freezer for several months. Add to cooking daily!
3. Lard and Ghee (clarified butter) – pig leaf (kidney/ loin) fat, slice thinly & simmer for several hours in salted water, strain, discard solids, leave to cool & store in fridge for up to 2 weeks or freezer for several months. Add to cooking daily!
4. Raw garlic 8 cloves & ginger 1 large finger – chop & leave to sit for 15+ minutes before adding to food after cooking (MORNING ONLY).
5. Cinnamon – add up to 1/2 tsp per day to cooking or drinks.
6. Bentonite clay – 1-2 tsp, mixed in warm water (place in glass jar with lid & shake vigorously, leave to stand for 24hrs, avoid all contact with metal or plastic spoon etc. Drink at least 1,5 hours away from food (for us best results were observable when given just before going to sleep)
7. Fermented vegetables – to be consumed with all food (big dollop with each meal).
Eat nothing that is moreish/ addictive.
No burnt, raw (except garlic & ginger), fried, spicy, starchy or sugary foods (not even carrots, unless fermented) – we are still giving carrots as we’re in a transitional period of re-applying this diet in our eating schedule.
No dairy, grains, legumes, nightshades, root vegetables (unless fermented), nuts or seeds (very hard to digest and shop-bought nuts & seeds tend to be moldy & hence best avoided altogether), yeast.
No eggs (on in strict moderation as constipating).
You would not believe the immediate change you would see once on this diet.
This is so true that YOU ARE WHAT YOU EAT!
Arts and crafts with a taste of ginger…. May 10th, 2016
Booboo Bear is into drawing again!!! I couldn’t be happier. First of all, because he’s really good at it, always has been. Secondly, because it’s therapeutic. He gets his emotions poured down on paper. He (just like me) prefers one color pencil and uses shading to give different saturation to the drawing.
Last night I picked up both kids straight after work, thinking it’s going to be another evening of frustration and growling, but then Booboo surprised me. We got home, had our routine – Jake headed straight to the fridge to get his probiotics and then fish oil, while Gracie checked that the door leading to upstairs was locked. (Reminder to self – buy more organinc ginger! That’s the best reinforcer right now. He loves it. And I mean LOVES it! After eating a handful of it, he runs with his tongue stuck out, trying to quench the thirst and fire in his taste buds, ha ha). Anyway, he sat down at the little “homework” table, took a pencil and started drawing. I was all stressed out and ready to snatch the pencil away from him, as till recently he was just getting them to eat (yes, pica!). To my big surprise, he was like the Booboo from 4-5 years ago. Sitting all nice and neat, drawing, staring at the room corners and drawing their 3D outlines…
I heard a good message on Sunday reminding us about our gifts, and how we use them. As parents we have our hopes and dreams regarding our kids’ future. That’s normal. I must admit, I gave up many of my dreams, because of Jake’s diagnosis. I couldn’t be more wrong! Huge mistake! He is very talented and super smart. I must embrace his talents (drumming, drawing, jumping, climbing, running…) and set him on a path to excel in those gifts. Encourage to achieve his goals and support wholeheartedly all his efforts. Who knows what the future holds and what God will do in Jacob’s life…
Another thing I wanted to share is something that made us laugh out loud. Last night I used my phone to play “sleepy” music, hoping it would help kids to fall asleep faster. It definitely worked on me and Daddy Bear – both of us were kind of comatized, with eyelids drooping down, like in Looney Tunes cartoons, ha ha. I heard alert of incoming message, so I asked Jake to give me my phone back. He then gave me a pencil with a smart grin. I said louder “No, a phone. Give me my phone!”. He pushed my hand away and started laughing. He knew exactly what I was asking, yet he acted all cheeky, basically pulling an A card on me, pretending he didn’t understand the request. Little stinker. He even turned his back towards me, to block me off. I was impressed!
We need to enter their world, folks! Once they let us in, it’s so much fun and wit. I love autistic brains, don’t you?
Air drumming therapy for ASD Parents
Awesome start of the day! Woke up to the loud breathing of my boy, snuggled up in our bed. Daddy Bear nowhere to be found (found out later he migrated downstairs and collapsed on the couch, trying to find some quiet time). Grace came to me with her usual “good morning” song and skipped down the stairs to be with her daddy. Yey!
I got up at 7, took advantage of vacant bathroom, and got ready for work. All set by 7:30am. Exhausted from uncomfortable sleep (all night I was trying to arch my back in weird ways, to avoid my boy’s knees or elbows). I’m sure many of you can relate J
After healthy breakfast (tutti frutti smoothie) and a cup of hot coffee, I left the house in a great mood. Singing along with my CD (phenomenal gospel jazz band from America!), I was flying high in all present JOY! Every time I stopped on the red light, I realized other drivers were staring at me. Yes, I am one of those crazy drivers who imitate playing different instruments that play solos in certain parts of the song. I mastered air drumming and saxophone J Not too shabby on air piano either, haha. It’s very therapeutic, trust me. Teaching to care less about what others might think or say about you. I truly recommend it to everyone!
Now the core of my story. Got to work on time! All excited yet surprised, that the parking lot was empty, I walked to the office building and realized our door was locked and no one was there. Apparently today is a bank holiday here and everything is closed. I turned around, went home, sorted clothes, got rid of tons of clutter and cleaned the house. Picked up kids from grandparents and now dealing with one frustrated boy who demands more ginger. Yes, Booboo loves feeling that fire in his mouth! When I refuse to give him more, he throws tantrums (throwing toys at me, pushing his baby sis and knocking chairs over!). My neighbors must think I am a psycho. I do have strong lungs L Even when I whisper, other side of town hears me, or so my husband says, haha.
We’re on nebulizer treatment again – antihistamines don’t do the job anymore, and allergy triggered asthma like symptoms – wheezing, sneezing, gasping for air before coughing etc… So we’re prepared for more “outbursts” of side effects. Need to continue the treatment for 7 days!
Footprints in the sand… April 29, 2016
Are you familiar with the Footprints in the sand poem? Well, let me remind you then. It’s worth reading 🙂
Footprints in the Sand by Mary Stevenson
One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.
This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.
So I said to the Lord,
“You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during
the most trying periods of my life
there have only been one
set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?”
The Lord replied,
“The times when you have
seen only one set of footprints,
is when I carried you.”
The reason I wanted to share this, is because we tend to get wrapped up in our struggles, pain, disappointments and frustration. ASD parenting on top of daily stress related to work, relationships and finances sometimes can strip us off the last bit of joy and hope. We pray, we do everything we know to do and it seems like we’re left all alone. In the most difficult times of our lives, when we’re at the cross roads and we lose track of things, we expect God to step up and walk beside us, right? Well… Like “Footprints in The Sand” beautifully explained, when we lose sight of one set of footprints, it’s when Heavenly Father is carrying us in His loving arms. Reading this poem for a billionth time I was reminded to take my focus off the sand and look up, to see His face and feel secure again…
I encourage you to let God lead and sometimes carry you through this journey called life. Many people asked me privately, if I am being honest when I write my blog. When I replied “why?”, they explained that apparently I seem to be too optimistic, too happy, too good to be true. Well, let me tell you something. I am always trying to say what I mean, and mean what I say. I don’t sugar coat the reality. If I don’t mention details of our tough days, it’s because I try to protect the dignity of my boy, or simply don’t see how that could benefit others by me writing about it. The reason my marriage is not falling apart (although it’s not perfect), is because we are playing on the same ASD Team, fighting for our Family. The glue that keeps us together is the One whose footprints in the sand are often the only ones there, because He’s carrying us through the bumpy roads. And yes, we’re just humans and we do get on the down side ocassionally, but knowing the bright days are coming and we’re not going through this journey alone, makes all the difference. My joy is found in Him alone!
So we had another hospital emergency. Stomach being pumped and activated charcoal poured in… Oh joy! Frenemy PICA made her glorious return. Since then, I took matters into my own hands. Allergy season doesn’t help, for sure, but I am determined to help my family.
We started kefir treatment, plus Bentonite Clay drink before going to bed. Jake is calmer these days but also faster! He’s a cheeky monkey. Throwing toys at me to provoke me to chase him. He’s too fast for me to catch him and it tickles him to pieces 🙂 In order to grab him on the run I had to move furniture to clamp him between the two couches. Now my little genius picked up the idea and moves ALL our furniture around. Very heavy, massive wooden dining table is being pushed around as if it was a feather. I’m worried the next Arnold Schwarzenegger is growing right under my roof, haha.
Aha, another thing I’ve noticed was Jacob’s light orange coated tongue. It wasn’t from any food colorings or crayons. After consulting our doctor friend, we were told it might be Candida Albicans. Great, I thought! I’ve tried that diet before and the list of “food to avoid” is endless, while “food to eat” seems sweet and short. But then I found this amazing website with delicious recipes and valuable guidelines (www.thecandidadiet.com/candida-recipes-breakfast). Today we had awesome breakfast – scrambled eggs with red and yellow peppers, onion and parsley, all cooked in ghee and coconut oil with turmeric, Himalayan salt and black pepper. Delicious 🙂
I’m really excited about getting my household in dietary order. Joseph, however, is responsible for our spiritual well being 🙂
And so our life goes on… Have a blessed and healthy day, everyone 🙂
Making the most out of life is the key to happiness… Tomorrow is not promised, so why do we act as if we were immortal? I’ve heard this great message the other day, reminding me about the importance of the simplicity of Carpe Diem. Sadly this ancient phrase has been abused and twisted, condoning doing anything as one pleases. Nowadays, it is synonymous with living your life taking chances, gambling, being selfish and careless, without putting too much thought into the future. That’s not how I understand Carpe Diem… I believe in seizing the day in a way that would leave a significant impact on others, should you die.
I don’t like leaving the house without saying, “bye” and “I love you” to all my family. Same when it comes to going to sleep angry. First of all, anger or any negative thoughts will be reflected in our sub consciousness and dreams. Secondly, it will surely affect our health and the morning after (headache, negativity etc.).
Do you know that at the end of the day we are all Energy? Let me explain what I mean, by giving a few examples from Quantum Physics. I’m sure you’ll agree with me, if I say, that every cell in our body is a huge storage of information. Each cell is made of molecules, each molecule is made of atoms, and atoms are made of electrons, neutrons, and protons. In connection with Einstein’s most famous formula, E=mc2, we have been taught that matter and energy are equivalent, (that we can convert energy into matter and vise versa), and that the energy in a piece of matter is equal to the mass of the matter times the speed of light squared. Thus, even minute amounts of matter represent a lot of energy 🙂 Breaking it down even more, if you take your eye under a microscope you will see a network of cells. Then if you “zoom in” even more, you will see that each cell is like an agglomeration of particles connected by a complicated web, passing impulses to the brain. Zooming in even closer, we will get into the center of an atom (Nucleus) and taking an even closer look, we get to the source of ENERGY! Ergo, our bodies are physical manifestation of energy.
I am not ashamed to admit I believe in Creation. As a scientist and a reflective person (at least sometimes :)), I see the facts proving Intelligent Design. Our bodies, the galaxy and entire Universe is wonderfully and fearfully made by the Absolute Power. Again, our thoughts, dreams and emotions can be tracked by modern medical equipment, proving that this process produces frequencies, similar to radio waves… ENERGY!!!
The quality of our thoughts may indeed affect our entire day. I’m sure you’ve had “one of those days”, when you wake up exhausted after the alarm clock goes off. You stick your foot out of the bed and walk into chest of drawers, feeling a throbbing pain in your big toe. As you growl and move to the bathroom, you open the tap and flaming hot water burns your hands etc… Why? It’s because the energy of your thoughts is returning in the same frequency (energy changing into matter and then matter back into energy).
On the other hand, when you wake up with an Attitude of Gratitude, thanking God for another beautiful day, as you’re thinking of all the precious things in your life, your family and friends, holidays ahead, you play some uplifting music, you feel like dancing. Out of a sudden, traffic lights turn green, people keep smiling back at you etc… Why? Because your positive energy reflects onto others. ENERGY!!!
To sum up, when I drop Jacob off at grandparents and I fear he may be more hyper because of steroids he’s taking for his bronchitis, I project negative frequencies into space and sure enough, he is walking on the ceiling 🙂 On the opposite, when I look at my boy and focus on his beautiful smile, gorgeous blue eyes and his hand on my cheek when he looks at me, Jake becomes calm and sweet. He can sense my internal peace…
I will definitely exercise this Attitude of Gratitude. Who’s with me? 🙂
Sending you my love and all the “positive vibes” I have…
It is well…
6:23am – Jacob is up and laughing. Time to take him downstairs and make him “potty” (our upstairs toilet is out of order, so hold it in, buddy!). Success and relief 🙂
6:25am – “I want tatti” – part of our routine, Jake asking for his probiotics in a form of a white chocolate bear treat.
6:26am – “I want gagigga” – asking for fish oil gummy bear (gagigga is his word for a Polish word “nagroda” meaning a reward).
6:27am – “I want det” (translation: I want bread)
6:29am – “Jake, get off the table. Sit on the chair. Eat your breakfast properly!”
6:30am – “I said off the table!” – my acrobat sitting on our dining table like some yogi with legs crossed, enjoying his gluten free bread with almond butter. My phone alarm goes off! Stress levels increase as I switch on the news. Quickly change to kids channel… there, Art Attack! Love the show 🙂
6:53am – Oh my! I seriously need to get off social media, especially in the mornings! 75% of the news feed is worthless blah blah blah, and I’m sitting there, reading updates from people I don’t even know or care about. My 5 year old Grace walks in- “Mommy, why are you watching Art Attack without me?! This is not an appropriate program for a grown up anyway”.
6:54am- my brain is blown away because of her rich vocabulary and wit. Going to the kitchen to fix kids’ lunch boxes. Apples, carrots, sandwiches, grapes… Good enough! They’ll be back from school by 2pm and will eat proper food then (thanks to my wonderful parents-in-law, who feed the entire flock. May God richly bless them!).
7:15am- Daddy Bear is coming downstairs, dressed like a pro, white shirt, suit pants, cologne. So handsome and elegant… Time for me to rush upstairs and get ready for work.
7:45am- rushing to get the kids out of the house. I’m taking Gracie to school and Joseph takes Jake to grandparent. Ah yes, we pulled our boy from school, after consulting with his principals and school counselor. What made us do that? How can I put it in simple words? We’ve found out that school and us had completely different ideas regarding Jake’s academic development, growth, and over all prospects of getting better. He will, however, graduate with his peers, since he already knows the whole curriculum for this year. It has been a mutual decision, which will hopefully benefit our boy the most. But just between us, it was not easy to hear that the school would not be able to admit our boy for the next year, unless we’d accept some more radical intervention (mainly medicating our son). There was mention of him getting older and stronger, therefore more difficult to control, in case of tantrums, etc…
8:59am- watching the breaking news about hijacked plane that landed on our island. Scrolling down to other news and reading about so called “active” terror plots around the world. My soul is grieving… Praying for the divine intervention from above.
1:23pm- dad sent me sms, saying that babies are very sweet and calm. That’s all I needed to hear to feel my spirit lifted 🙂 Praise the Lord!
Feeling peace about the decisions we have made so far and the over all future of our little gang… Once again, God heard our cry and patted our shoulders, saying “Peace, Be still. It is well”. We may not be a perfect family, but when we’re together, we are ready to face tomorrow!
One of the great verses that really lifted me recently can be found in the 2nd Book of Kings 4:26
“Run now, I pray thee, to meet her, and say unto her, Is it well with thee? is it well with thy husband? is it well with the child? And she answered, It is well.”
Peace and Power be unto you all 🙂
War against Bio-Scoungers
Alright, I need to retract all my steps, to see what has actually worked in Jacob’s recent improvement.
Firstly, pica was getting our of control, right? He was constantly grabbing non-food items and putting them in his mouth (often ingesting them). Art classes or specific school project have become a nightmare, both to Jake and his school, because it was difficult to arrange an autism friendly environment, when you need to use certain products, like glue, paint, pebbles, sticks, etc.
It became an obsession for him to snatch the “taboo” objects. Someone on the spectrum made me then realize, that he might be putting these things in his mouth and swallowing them for a simple reason – to keep them as his possession, so that no one can take them away from him. Like my little Grace is treasuring broken crystals or funny shaped stones, torn pieces of paper etc, something that is of no real value to us, but is like a million dollars to her. We call her our bag-lady, because she keeps all her precious things in different bags and purses.
Apparently ASD individuals feel similar about things that are valuable to them. Unfortunately, the neurotypical world cannot see through Autism Eyes and see “the facts” – he’s picking up a pebble, he probably wants to eat it! I need to stop him before he does that! And the next time he picks up a pebble, he remembers the past experience, so in order to make sure he keeps his treasure, he “hides” it within himself (not realizing the physical consequences of this action, of course!). It’s really difficult to undertstand pica. No wonder, there is no medical information on the topic. It sure requires a deeper study!
As a self grown scientist, I dig deep to get my answers. And if these answers don’t satisfy me, I keep on digging, using different resources… I am determined to get to the core of a problem and find a solution!
Based on the available information (very limited medical studies, blood tests results, biomedical journals, consult with NDs and Au-some adults, I put two and two together and realized PICA might occur due to:
- Mineral deficiency (especially iron)
- Parasites (duh, you pick up nasty stuff from the ground and eat it, there is a high chance that they carry something gross like eggs or something else…)
- Attention seeking (other people will definitely “react” to stop the behavior, ergo pica gets reinforced)
- Storing treasures, so that no one can take them away
We started iron supplements almost 3 weeks ago, combined with fish oil, calcium, magnesium and zinc + vitamin C (because of the cold!). Because Jake’s behavior did not change dramatically, we started the 3-day treatment for parasites. Although he complained about his stomach (increased spontaneous screams, which were passing after a couple of minutes), he finally had a good night sleep, and so did we!!! He calmed down, seems to be even more alert, and yay, pica’s compulsion decreased a lot. It’s not completely gone, but I believe we are on the right track. Stimming has decreased too…
Our next step is GAP Diet. No excuses this time! We either wanna see a huge health improvements or we don’t. I’m not saying GAP Diet is a miracle cure for Autism, because it’s not. But it definitely improves the quality of life and over all wellbeing.
I’m craving delicious sauerkraut… Polish cuisine has many mouth watering recipes 🙂 Mmmm…
When the going gets tough, the tough get going…
This beautiful song perfectly expresses my heart today:
When I think I’m going under, part the waters, Lord
When I feel the waves around me, calm the sea
When I cry for help, oh, hear me Lord
and hold out Your hand
Touch my life
Still the raging storm in me
You know the saying “When it rains it pours”? It seems like troubles and problems love mating and multiplying, doesn’t it?
Ever since Jacob’s chemical fertilizer incident at school, we’ve witnessed more health issues, anxiety, pica and stimming. As a rebel without a cause, I don’t ever take “no” for an answer. I did my own research and consulted with a few reliable sources of information (medical professionals, adults on the spectrum, holistic healers etc.). Just to cover all possible angles 🙂 All autistic adults I spoke with agreed on one thing – never stop a child who’s stimming. It’s their way of dealing with sensory overload, either positive or negative. Once I listened to their explanations, I realized there are different types of rocking, flapping, etc. They mentioned happy stimming and the one resulting from anxiety, frustration or physical pain/ discomfort. They basically made me feel what they felt as kids, when they were being blocked, scolded or shamed for reacting to different situations in a non conventional, non neurotypical way. They had been made feel stupid, embarrassed, ashamed, their self confindence was crumbled and made them even more “autistic” (withdrawn from the big bad world that sees them as unfit weirdos). We’re stuck between these two worlds – as neurotypical APs (Autism Parents) we try to enter our boy’s world, which is pure and beautiful. Filled with colors, full HD and dolby surround, if you know what I mean 🙂 Why on earth would I want to change my son’s expression of feelings and emotions?! Just so that he can fit into this tiny, colorless, boring box of socially acceptable rules? If society is not ready for the big A, we are not willing to be a part of such society.
Do you ever wish to just run away and hide somewhere, where there are no more smart conventional professionals (doctors, teachers, etc.), where you can just BE? I am still looking for a place on this earth, where any diversion from so called normal, is fully accepted and even embraced. Yes, it’s ASD Utopia…
Today our hearts have been broken and I’m not sure which way to go to recover fast. The only way is UP 🙂 The closer we get to the Maker of this world, the clearer vision of His plan we see… As the time goes by, we are more and more convinced of inevitable moves we have to make in order to save our boy, family, marriage and our sanity.
Regarding our good old frenemy PICA, I was told that there are only 2 articles published in medical journal, and none of them get to the core of the issue. They simply discribed the condition of each case and focused on pharmaceutical treatment with Aripiprazole. I’m sure it works for some patients, but most common side effects are too severe and too many to put my child through this! I am now even more determined to take a totally different approach, which I will reveal unto you in the right time, no worries 🙂
Even with my heart broken, I still feel optimistic about the future and what God has in store for our family! It’s amazing what a loving and caring Father we have. The Lord of all comfort. Glory and honor to His name, forever and ever…
Allergies, Diet and a Guilty Conscience
Weather is changing. Again! Crazy, strong wind, dust storms covering the entire island with gray and beige layer of bleh… I have a feeling the allergy season is upon us 🙁 I will not talk about conspiracy theories, but I do believe that there is something strange in the air. Literally! I can feel it! I’ve never seen so many people, especially young children suffering from asthma and other allergy triggered diseases. Last night I had an interesting discussion with our friends who did not realize our Jacob was allergic to so many things (dust, olive trees, caffeine, gluten, etc.). Basically, he’s allergic to the island we’re living on! Our house is built in the village known by the locals as the olive gardens. You can imagine us, when the trees are in bloom or when more sand and dust is blown our way from the Middle East or Sahara desert… Yay! The word puffy and snuffy immediately come to my mind.
It’s time to get tons of sauerkraut, kefir, turmeric, garlic, ginger, coconut oil, ghee, fresh fruit and vegetables and my favorite – essential oils. It won’t be as effective if you consume tons of sugar (also hidden sugar in all the ready made sauces, ketchups, bread, etc). As usual, I am determined to help not only my boy, but also entire family. Besides, how should our babies learn the healthy lifestyle and the healing powers of various foods, if we give them a bad example by eating stuff we tell them is harmful for us? We must remember that dealing with autistic individuals, we reason with super logical minds… So expect to hear: “mommy, how come I should eat gross sauerkraut and boring oatmeal, while you seem to enjoy this colorful and fun looking bag of chips with sugar loaded, MSG, transfat dip?” Oops! Yeah, chips are bad. I shouldn’t eat them either , but I love their taste. Busted!!!
Although Jake doesn’t speak, he expresses his thoughts in many different, very loud and clear ways 🙂 Plus he has the best advocate who is talking for both of them – Gracie, his baby sis. And I tell you what, she can really “shame” us good with her brilliant mind and replies, that even adults could not come up with! McD’s drive through? OK, we can try, sice we don’t eat there every single day. It should not hurt our stomachs that much. And as we’re placing our order, little voice at the back of our heads reminds us, what those ever fresh fries do to Jacob in a long term… This same little voice (also known as Grace) speaks up and tells us all about the old, carcinogenic oils that are used to make those fries. Of course the killer of our already guilty conscience is the question: “If it’s so unhealthy, why did you buy this food and you give it to your children? You want us to die?” Whoppa! Ice bucket challenge would feel like a nice cozy shower comparing to this 🙂
I know “everything in moderation” mentality works well with majority of the population but does not work with our ASD, IBS, OCD, ADHD family. We tried both: full on board, sticking to “Autism diet” protocol (not long enough, though!), and “moderation” option. Change was noticable both in sleeping patterns, digestive system and over all behavior. Our current lifestyle does not allow us to have a full control over “Autism diet”, because we need to depend on other people involved in Jake’s life – often believers of “Everything in moderation” option. We will however plow the ground by adding more “good stuff” to our daily diet, getting rid of the sugary, artificially colored food. Of course I will keep you posted as we progress.
Hey, do you think I am turning into a Hippie? I bet that’s how the medical professionals see me now, haha 🙂
Meet our latest frenemy – Chronophobia
Chronophobia is defined as the persistent and often irrational fear of the future or the fear of passing time. Since time can be considered as a “specific object”, Chronophobia falls under the category of specific phobias. The word Chronophobia is derived from Greek ‘chronos’ meaning time and phobos meaning fear.
As we were sitting comfortably in our own Autism marinate, bubbling and growing quietly, we heard a loud knock on our door. Who is it? – we wondered. It’s me, Chronophobia! – she answered in a soft voice. I quickly opened the door and let the visitor in. She came in and passed me by, to make her way into our living room, also known as our Autism Reality Headquarters. As you can imagine, we all looked puzzled and a bit anxious… Who on earth is this unexpected guest? As I was asking myself this question, I heard her talking to my husband. His face turned pale, expressing sadness and stress. I know that look! I saw it last when we first heard Jake’s diagnosis! What is she talking about?! – I wondered. She doesn’t know us and yet she dares to just come in and cast this shadow over our family! I need to speak to her, in private! NOW!
Chronophobia, may I have a word with you? – I asked showing her way to the kitchen. But of course, my dear friend. – she replied with an evil grin. You probably don’t remember me, as it’s been a while since our last meeting – she continued. – But I am back in town and decided to stay with you guys for some time… I was speechless. Now I remember! Chronophobia was an unwelcomed house squatter who stayed with us for a long time, feeding our heads with dark pictures of our future: “Jacob will be staying in a home/ institution, he will never speak, he will never go to a mainstream school, your family will most probably fall apart, your ministry will end, your marriage will end up in divorce, you’ll get deprerssed and suicidal, etc…” Yes, I remember you!!! My dear frenemy! Apparently her baby nephew (Pica) told her, he had kept us busy over the past few months, and was going to feed on our anxiety, like a parasite. She realized it was a perfect opportunity to step in and join the fun.
Oh boy! They had no idea who they were messing with! Autism Mama and Daddy Bears woke up from their winter marasmus! With one unison roar they destroyed the unwanted guests! Pica still tries his luck with Jake but our boy’s iron (Ferrum) protection should weaken the enemy and eventually make him gone from our lives for good! Regarding “auntie” Chronophobia, I’m sure she’ll pay us unexpected visits every now and then. But for now, we chased her away with a specific plan for the nearest future, which filled us with hope, joy, health and stronger faith God revealed new plan for our family life and we are all on board with it! As my hubby said, we’re ALL IN!
It has never been more accurate in our lives than it is now. Quoting Romans 8:28: “And we know that all things work together for good to them that love God, to them who are the called according to his purpose.”
A bit of routine…
Ahhh… heavenly smell of freshly made coffee, a drop of delact milk and voila! I can enjoy my day now 🙂
I was asked about routine for our Autism household and how, in general, our day goes by. Hmmm, that’s not as easy to answer as I have thought. OK, in general our life is rather chaotic to say the least, although we tend to stick to our self-occurring routines, especially in the mornings. Let’s take today as an example. Around 4.30am we felt our little boy climbing into our bed and finding comfort between my husband and I (this has been going on for years – on and off, but recently more on rather than off :)). Knowing I would have to get up, pick my 28kg (62 pounds) bundle of joy, walk around our bed trying to squeeze through a tiny gap between our bed and chest of drawers, carefully passing long legs sticking out of the bed (my original bundle of joy is over 2 meters tall – 6’8″) and carry Booboo all the way to his room… I thought to myself “look at him sleeping so peacefully with mouth wide open, producing sweet little snoring sounds, having REM as he was obviously dreaming about something – perfect copy of his daddy :)… Ahhh, he can sleep another hour or 2 and so can I!”. I don’t know about you, but my mind never rests. As I started thinking of all the things I would have to do to move Jacob and then thinking how little time I actually slept, and how my body needs rest and how people can’t lose weight because of lack of sleep etc etc. I felt tired just by my thoughts marathon. Knowing it was almost time my alarm would go off, I was getting even more anxious and frustrated cause this mama bear NEEDS SLEEP!!! Sure enough, alarm came and wiggled her way into our bed. Mhm, our baby girl (now 5 years old) sneaks into our bedroom everyday around 6am ready to conquer the world. Yup, to give you a better idea although we have a rather big bed, I feel like a winnie sausage trapped between two precious heaters 🙂 One snores,the other wiggles and hums cute yet annoying, especially in the early morning, tunes. We take turns who moves little alarm tune machine downstairs to prepare her “chocolate milk”, pack school lunchboxes, squeeze fresh juice to detox our bodies as a kick start of the day and put on a kettle for delicious coffee for mommy and daddy 🙂 No, wait! That’s only when it’s mommy’s turn to go downstairs at 6am 🙂 Daddy bear simply drags his body downstairs following a skipping, cheerful monkey who doesn’t stop talking, unless it’s a break to sing, then it’s back to talking. There is some water boiling in the kettle as I can hear the whistle and few seconds of silence, which could only mean our baby girl is missing or she’s devouring her chocolate milk. While she’s enjoying her morning drink, boosting her energy (I know!!!), mama bear and baby boy are still resting in bed. Today I actually dozed off after the other two went downstairs and I woke up 20 minutes later – still tired. Now I know why, cause there was no whistle, ergo no chocolate milk. It was 7:08am and we had 22 minutes to feed the flock (kids and animals), pack their lunchboxes, fix some food for us, make fresh coffee, forget the juice – we’re so late!!!
I dragged Jake off the bed, walked him to the bathroom and made him do the usual routine (“pee pee in the potty”, wash his hands and face and walk him – with his eyes still closed – downstairs to our living area. I saw daddy bear stretched on the couch, impatient ballerina watching a “turkey movie” (really funny one actually) and demanding chocolate milk, Jacob circling around me like my very own satellite asking for “tatti” (probiotics in a form of white chocolate – very useful) and sausage (good source of protein). Cats outside going crazy, waking up the entire neighborhood, our poor little Bonnie (2 year old labrador) still curled up in her chair waiting for the magic gates to be opened and food poured into her bowls… realizing it was 7:23am I started pouring cats’ food into kids’ lunchboxes. Kidding!!! No, no. I was tired but I packed the right food into each box, fed all my dear creatures – including daddy bear and myself! Sure there have been some hissing and growling along the whole frantic morning but we managed to deliver kids to school “almost” on time! Yey 🙂 So there you go! Our “routine”. Of course it varies but in general that’s how our mornings look like. I noticed our boy is confused when we are on holidays and not because of different location but because we’re relaxed – IT’S NOT NORMAL 🙂 I must say though, that recently, even if things were not prepared for school or coffee made, my husband has been letting me sleep in or should I say, rest in bed for extra 20-30 minutes, taking the duty of coming downstairs with a chatterbox upon himself 🙂 So yeah… as difficult and frustrating Autism can be, if you have the right people to share it with, you’re alright. God brought us to it and He will bring us through it. I see things a lot more clearly these days. It’s not by coincidence that we were blessed with this special boy, whose soul is so pure and innocent that he cannot see any evil in others. Will there ever be a cure for Autism? I don’t know. Until there is one available and effective, I will stick to the tested things that work for us – diet, love and most of all – GOD.
Hope you all have a blessed day and find sweetness in the craziness of autism reality.
P.S. Coffee is cold. How long have I been writing this? Seriously!!!
Bilingual family in a foreign land – our ASD life
As I look back, I realize my husband and I could not have a “neuro-typical” family together. It was predestined to have it all other way around, as we have always been the crazy kids on the block. I was like the still waters that run deep, causing some trouble every now and then. My angelic face got me out of trouble many times… I could never sit still and watch TV, like kids nowadays do. Partly because “kids’ programs” were not available 24/7. We had like 2-3 channels and kids could watch cartoons on Saturday and Sunday morning till 10-ish and then “goodnight” story for 20 min after evening news section. And that was it! So, like most of you, I spent my days outdoors. I found it easier to play with the boys rather than other girls. I always loved climbing trees, playing cards, not so much playing football, but doing all other things that were far more fascinating than changing dollies’ clothes and playing tea parties… As a teenager I also volunteered to be a hero “saving” my class from semestral exams, by acting in a really dramatic way (and yet very believable) faking acute appendicitis and other medical emergencies 🙂 May God have mercy on me ha ha. School nurse got to know me well by the end of my academic years. So yes, not an average Joe.
My husband had similar experiences, always pranking his peers and being a leader of his pack. He never had problems making new friends, always with a great sense of humor. I remember the story he shared when his best friend Ben came to his house for a meal. Mom cooked some delicious food and everyone ate with good appetite. Then when Mom left with all the dishes, Joseph said very loud “this is so rude of you! Why would you say that my Mom’s food is horrible?! I can’t believe you”. Poor Ben turned red and was ready to strangle my husband with his bare hands. 🙂 Although we were raised in two completely different environments, we were so alike. And then when we finally met, we knew from the beginning that was IT 🙂
To cut the story short (finally haha), we fell in love, got married twice (to each other!) and then stork flew over our house and dropped our Jacob first and then 3.5 years later his baby sister. We’re a Polish – American family living in Cyprus, having great friends from Israel, Lebanon, Russia, Cyprus, Greece, Romania, Austria, Philippines, UK, Sri Lanka, Holland, Germany etc…. We’re truly blessed. And so as a young mommy, I was talking to my baby boy both in Polish and English, until I went to work when Jake was one. Then it was more difficult as I didn’t have much time with him. One and a half year after that, we had first ASD diagnosis and suggestion from pediatrician to limit communication language to just English 🙁 It hurt me (and still hurts) that my language was put on the side track as less important. I know if we were living in Poland it would be different, as we’d be surrounded by this language. In Cyprus official language is Greek (but of course! – “give me any word, ANY WORD! and I will prove that its root is in Greek!” – quoting from the movie “My Big Fat Greek Wedding”). All doctors are Cypriots, public schools are Greek language based. We had a big problem. There were even some suggestions that we should learn Greek and speak in Greek at home, so that Jacob could go to public (free of charge) school one day and to know Greek by default. Sounds crazy now but back then we were considering all options. We found private English kindergarten and then school, so problem was solved (although a very costly solution to language dilemma). Funny enough, our boy shows great interest in foreign languages. He loves the sound of Chinese, Hebrew, Arabic, Greek and Dutch. At school he’s writing his name in Greek alphabet as if it was no biggy… This boy is full of surprises, no doubt!
Bilingual parents, multinational friends at school and in church, Polish grandparents who took an effort (in their mature age!) and studied English for several years, in order to communicate with their “foreign” grandkids (sigh)….
Psychologists and all the smart medical professionals seem to be on the same page regarding limiting communication language to just one (English). The same rule applies to calling Jacob by his name, not to confuse him. Ha! Now that would be easy if we were “normal” parents obeying instructions coming from professionals. As the natural born rebels without a cause we cannot conform ourselves into small boxes of conventions 🙂 We both make up words and nicknames for all the members of our family. It’s impossible to just have one name and one nick. So our poor boy on the spectrum knows (and likes) all his nicknames. And, what puzzles the medical world, responds to most of them 🙂 In my craziness, I tend to forget that when picking up kids from school, I should call their given names. And then I see surprised faces of other parents when I call my kids by their nicks… Some of them are really bizarre:
Booba Boobela – female form of the original name Booboo (origin: Yogi and Booboo Bear)
Sillina – combo of the English word “silly” and Polish ending of female names “na”
Grumpelstinsky – nick for Daddy Bear 😉 I don’t think it requires further elaboration (“-sky” is a typical surname ending of Polish American immigrants)
Floopy doopy doo with occasional moderation of Floopidy Floop Floop and Flopster
Dziumbellina (pronounced: joom-bellina) – no real meaning but sounds cool
Frompiduria – again, totally made up word
Occasionally we throw some random Greek words like “glikaniso” (γλυκάνισο) which means aniseed. I know! Couldn’t get more ridiculous 🙂
To sum up – there’s this magical beauty in our multinational existence and bilingual family with crazy made up dictionary that keeps our Autism reality that much sweeter. Since we cannot change circumstances, we can and we most definitely will change conventions and words we use.
What’s the recipe for happiness in our crazy household?
1 American stud
1 Polish female rebel
2 Polish- American kids
handful of humor
1 tsp of seriousness
10 Tbsp of craziness
pinch of sadness and trials
a whole lot of Autism
and all marinated and cooked in pure organic faith
That would be all, folks! Stay tuned and send me some comments 😉
Love and kisses…
God bless each and every one of you
How to decode non-verbal communication
I wish I could say “all you have to do is this and that” and you’ll understand your non-verbal child. Fact is, understanding them is like breaking the Enigma code (by the way, it was broken by three Polish cryptologists: Marian Rejewski, Jerzy Rozycki and Henryk Zygalski, working for Polish military intelligence. Yes, I’m Polish too ha ha). It took us quite a long time to break the “Jacob Code”. In the beginning it was a constant frustration and tantrums. Communication became an issue when Jake stopped talking at the age of two! Suddenly understanding his needs and wants seemed like a hopeless guessing game. He was expressing his hunger by screaming and pulling us by the hand to the kitchen. He would not point to the fridge or cupboard but rather push us towards places, where he’d know the desired food was stored. If you pulled out the wrong product and asked “is this what you want?” he’d scream even louder and would get more and more frustrated. Another wrong guess and we’d have a full blown tantrum! So yes, we had two choices: continue on the slippery slope of extremely stressful for everyone guessing game, or learn Jacob’s language. It is mind blowing that at the age of two/ three, our little guy created his own dictionary/ vocabulary. He must have thought “since these supposedly smart adults don’t have a clue how to read my mind, I will need to move a step towards their world and communicate with some kind of words”. And he did! Even now, he’s still using it occasionally. As soon as I observed that he was attempting to teach me “names” of food items, toys etc, I started taking notes and wrote down everything he would share. I was considering learning basic sign language to offer him more options to express his beautiful yet complex mind. Thankfully I was introduced to PECS (Picture Exchange Communication System) and Jake loved it from the start! He very quickly got the idea behind PECS and started asking for his favorite food and water via pictures. Screaming became less frequent and our stress level dropped significantly!
Like I said, understanding everything he’s trying to tell us is close to impossible but as an AP I don’t settle for little. I am determined to decode his brain and have full on dialogue one day… SOON!
He’s learnt to identify pain in different body parts, so when his stomach hurts, he puts my hand on his belly and looks me in the eyes full of hope I’d understand and help him. Or when his ear was bothering him, he’d hold it and show me it was hurting.
When he’s hungry, he tells us (through PECS) and his vocabulary what he wants. We encourage him to speak, but don’t force him. He will speak one day, no doubt! How do I know? I serve an awesome God, a mighty Healer, who created my boy in His perfect image. There’s simply no other way 🙂
My baby boy knows the power of prayer and he enjoys hearing the Mosaic Blessing over him each morning and before going to sleep. The Word brings true comfort to his troubled soul, that’s how I know God is in control. Try blessing your children the way Moses blessed his people and notice the difference:
May the Lord bless you and keep you.
May the Lord make his face to shine upon you,
and be gracious to you.
May the Lord lift up his countenance upon you,
and give you peace.
A Trip to the ER and the rise of Autism Mama Bear
Pouring a freshly brewed coffee to begin my work day. Putting my mug down to answer the phone. It’s from school. Jacob has ingested some non-food items. Feeling the angry vein popping on my forehead! What kind of non-food stuff did he eat and how did this happen?! Aha, plant fertilizer… But better to take him to the doctor. Hmmm. I just started my new career, trying to prove my worth to the company and here I must drop everything and rush to school? Now I’m really mad! Who’s responsible for this careless action ? I’m ready to roar now. Autism Mama Bear has returned!
Pulling up to the hospital. Jake seems ok but is very hyper. The ER is a busy room. Rushing nurses, impatient patients, paramedics bringing some casualties, blood trickling down guys foreheads, an older lady who’s about to pass out in a wheelchair, a kid with a broken arm on a neighboring bed, Indian couple on the other side. Intensive smell of alcohol disinfectant and chlorine, bright fluorescent lights and unimaginable heat (using aircon must be an abstract idea in here). I can hear metal tools hitting metal trays, heels of a nurse’s shoes clucking loud as she flies through the ward… If I feel so overwhelmed, then how much more must my little man must sense all that!? And where are all the doctors? My son swallowed some poisonous plant fertilizer. I’m about to lose it!
Chelation administered after 3 hour ordeal! Thankfully the nurse allowed me to give it to Jacob myself so he’d be less anxious. Now it’s the waiting… I hope we can go home soon. Jake is fed up and asking for a walk. I don’t blame him. I’d be a lot more difficult patient if it was me. Ha! In cases of poisoning, patients must stay in hospital for at least 24 hours of observation. Fantastic!
They’ve just admitted us. The room is warm and child friendly. I like it. Jacob is asking for a shower. I might use one myself. Waiting for daddy bear to bring us a change of clothes and basic cosmetics 🙂 grandparents sent stuff too. Feeling love coming from our family and friends, reading all the sweet messages… Jacob needs his blood drawn for tests. Seriously? are four nurses really necessary? No autism awareness! I’m telling them off. Stop it this instance! Your screams and commotion is not doing you or him any favor! Let me talk to my boy. Just because he’s non- verbal doesn’t mean he’s stupid. After explaining the procedure to Jake, he let them do the job. My patience is running very thin right now. One more strike and I swear I’ll snap. And it’s not going to be pretty.
Shower helped! Booboo is finally asleep. Hallelujah!
Unbelievable lack of common sense! The nurse just came stating they’re moving Jacob to a double room because they need his bed for another patient! There! I warned you! That was the final staw that broke the camel’s back. Oh, I’m roaring alright! Medical staff has left the room… You don’t mess with exhausted, frustrated, overprotective Autism Mama Bear! It’s been a while… I don’t think they’ll be back with similar brilliant ideas. It’s going to be a long night. But Jake is sleeping like an angel and that just soothes my soul. I can feel my adrenaline dropping, making me sleepy too… I’ll try to catch a few hours of rest.
Today’s experience made me even more determined to demand autism awareness trainings for all public services here. Hospitals and police have no excuses but to learn how to deal with autistic patients.
The world needs more love. Plain and simple…
Reporting live from hospital, roaring AMB 🙂
Sometimes I cry…
Autism Parents, as they gain more “experience” in raising kids on the spectrum, master the art of hiding their pain and sorrow. I can definitely relate to that. As a psychologist, I know storing our emotions may do more harm than good. However, as an Autism Mom, I have learned that it’s often pointless to try and share our “inside out” with neuro-typical parents. They often mean well, trying to advice and making cliché comments filled with plastic optimism, completely missing the point. Don’t you get sick and tired of: “…but he looks so normal” (DUH!), or “Do you think he will ever grow out of it?”. The one that makes my skin cringe is “I admire you! If I had an autistic kid, I would never risk another one. Thank goodness your daughter was born normal. But you know, I ‘ve read autism is genetic”, blah blah blah. I don’t care if it comes from a stranger or a close friend – in my head I am doing unimaginable things to their faces, with my bear hands.
That’s how I’m dealing with my emotions…
It is so important to find a support group or simply find other Autism Families, who’d know exactly what you’re going through and who would not freak out when you’d go visit them with your ASD kiddo. My friend, whose son goes to the same school as my kids, shared with me how she gets frustrated whenever she goes somewhere with her boy. His obsession is to play with the air con and light switches. I can definitely relate to that one – Jacob used to do that too, but thankfully lost his interest in those last year. It is so hard to go to our neuro-typical friends and families, isn’t it?
I love reading other “autism” blogs and talk to different Autism Parents or adults on the spectrum. It makes me realize that Jake’s behaviors are actually normal, in the ASD world. I don’t feel so lonely anymore. I get to be me and talk about the alternative “normal” without the need to explain everything I say or do. I love Autism Parents. They totally rock! I look at them with more compassion and admiration. They love their kids so much that they quickly transform into warriors. Sure, all parents would defend their kids against bullies or immediate danger. But APs need to put up with that kind of pressure every single day. Attacks on our kids are less obvious, they are more subtle in their nature. Remember that “Au-some” individuals notice details. They are a lot more sensitive and sense the surrounding them world 100 times more intensely than us. They notice the looks and hear the “pity” in others’ voices. That’s why Autism Moms and Dads grow thicker skin and try to do the fight for their children every single second of every single day. I try to hide my anger and frustration behind a smile when I hear the well meaning “autism experts” who have no clue on the subject whatsoever!
Sure we are tough and strong but even us, warriors sometimes cry… And hey! It’s OK
Non-verbal doesn’t mean deaf!
I’ve read this thought-provoking article written by an adult with Autism, who was non-verbal most of his childhood. He explained how he could understand everything people were telling him, but he would just choose not to reply out loud. He’d answer their questions in his mind, etc… He also mentioned all the emotions that accompanied those experiences –the pain of being called names, or when his family and peers were treating him like a mentally challenged individual, etc. Man, did that open my eyes! I look at my beautiful Jacob’s face and see his angelic nature and so much wisdom. Sure, there’s a lot of mischievousness too, as he’s a regular 9-year old above all else! I regret losing my patience with him when he doesn’t seem to listen or doesn’t respond to my instructions. It seems so unfair! I can tell he’s hurting when I give up and throw in the towel, while doing his homework (after 20th time of bringing him back to the table and pointing to the text book)…
It hit me the most, when this man wrote about hating when everyone in the room was talking about him, as if he wasn’t there. I caught myself doing that with our Booboo Bear too! Especially after school, when I used to drop the kids off at mom and dad’s, they’d ask about Jake’s day. So I’d “report” everything that I’ve heard from his assistant and teachers, speaking about him and not TO him. I try to be more careful now! We all do…
Last week we celebrated Jacob’s birthday and all day was about him and what he wanted! You would not believe how happy he was, smiling all day. His daddy took him to the Toy Megastore and let Jake choose any toys he’d want, at the same time letting him know the budget. Unbelievable coincidence (or is it?!) that he got several different toys (mainly airplanes and cars of course!), and got only several cents of change. As if he calculated the total cost ☺ you know what? I won’t underestimate my boy anymore! He doesn’t stop surprising me…
I know he is happier when we talk TO him and not about him. He’s then less anxious and in a much better mood. But who wouldn’t be?! Regarding the author of that article, he said he started talking when he was in the 3rd grade! Just like that, because he figured it would be nice to see if people would treat him differently and because he was getting impatient with how wrongly they read his mind ☺ I still hope for such a breakthrough with our boy!
Looking into my baby’s eyes feels like an emotional x-ray or a scan of my conscience, if you know what I mean. I can see he’s communicating something, but I’m often set to different frequencies.
The key to unlock our babies is making an effort and getting into their world, learning their ways of thinking and seeing the surrounding world through their beautiful souls… Tune in to AU-some frequency!
Hikes and Yikes!
I really can’t wait for the spring and our weekly hikes in the mountains… That is always an adventure. I remember very well our first big hike around Mount Olympus. We were told that it’s a very picturesque walk that makes a perfect circle around the mountain – starting and ending the trip in the same spot – HA!!! It was 2 years ago, Booboo was 6 and Jambalaya (one of many nicknames for my baby girl) not even 3 years old. Knowing how much my husband loves adventures and hiking, I decided to surprise him with backpacks filled with healthy snack and drinks to last 3 hour hike, or so we were told!
All excited we drove up the mountain on a gorgeous, sunny day… Up there it was cooler than by the sea where we live, so it was really pleasant to walk. We parked our car in a shade, under the tree and started our hike. How wonderful. How splendid! One thing our friends were right about and that was the most spectacular views and tranquility all the way… As you can imagine, 6 and 3 year old troopers got tired after first 20 minutes of our walk. No biggy, we can make a short stop to refuel our bodies with some sausage and water…
As we stood up to keep going, our little princess asked if we’re “almost there” cause her legs were getting tired!!! We knew we had ahead of us at least another 2.5 hour walk but as we all do, we answered in a quite convincing manner “YES, almost there”. Jake asked to be picked up and carried in Daddy Bear’s arms and I had to do the same with Gracie.
Even if they weigh less than 50 pounds, if you have to carry them in your arms for several miles, your arms faint pretty fast. We kept going, changing the ways we carried them – letting them sit on our shoulders, carrying them piggy back style, carrying them in the front, supporting their backside on our palms (that’s a killer one right there!) and eventually making them walk despite pain.
After about 3.5 hour walk and going through all our snacks, we stopped even noticing amazing views around us. All we wanted was to get to the car as soon as possible, hoping we would see it behind the next curve. Another 2 hours passed and sun was setting down… Kids were crying and begging for mercy – literally. And so were we. I’m pretty sure I was speaking in Polish to vent my frustration and pain that was piercing my calves and thighs. Even my hips and back hurt! I was willing to stay under the open sky, just sit in the middle of the path and risk being eaten by the mountain wildlife 🙂
My hubby was walking faster in hope to see our car and to shout back to us that he found it. That would be nice. But we’re not an average hiking team. We had to keep walking… It was really odd that throughout the entire walk on this trail we have passed just one couple who was walking in another direction. We felt like we’re in Twin Peaks or something. Mysterious trail where people disappear… Finally we heard some cars on the road, so we knew we were close. What a relief that was, as we walked toward the setting sun and got extra power to speed up with both kids on our shoulders.
You can imagine our shock when we got to the road and didn’t see our car. No, it was not stolen. It was parked 5 kilometers up the mountain on the way to Olympus… Yes… the vision of walking up the road with two hungry, extremely tired kiddies did not turn us into kind and sweet best friends. Hissing and growling could be heard as we kept crawling up. At some point I was hoping that at least one of the passing us cars would stop and give us a lift to our car. Not a chance! My legs rebelled against me and I just sat down on a big rock holding my two sleepy babies. My man turned out to be a hero that saved the day, as he walked up the hill, alone, despite excruciating pain in his legs. He found our car and drove down to pick us all up. I’ve never been more relieved in my life. As tears of joy flowed down my face, kids immediately fell asleep and my husband turned to me, smiled and said “never again!” We could not move for 2 days. And we were in pretty good physical shape before this adventure 🙂 So what did we do the following weekend? Yup, you got it! We went hiking again but this time we took the right trail. And that became our new family tradition… Looking forward to see what tomorrow holds! 🙂 Aaaah, this time Bonnie goes with us 😉 more fun! Have a fabulous weekend and make some memories with the people you love! God bless xx
Date Your Spouse Challenge!
As I was driving to work this morning passing all the hearts and teddy bear themed shop displays I realized it’s this time of the year again – Valentine’s Day is upon us, folk! ☺
Being an Autism Parent is a 24/7 job. It’s hard! It robs you off “me” time and sadly, often ends in divorce (according to some statistics it’s almost 3 out of 4 marriages!). That’s why it’s crucial to keep that fire burning by making time to date your spouse.
As an AP myself, I know how difficult it is to find not only time for your date night, but to arrange “babysitter” for your kid on the Spectrum. You can’t just call a random babysitting agency or even ask friends to watch your kid for a couple of hours, as they would have no clue what to do and how to handle your precious child. Autism is a very complex neurological disorder, characterizing in poor social skills, lack of danger awareness, odd attraction to water (lakes, swimming pools, sea, rivers, even bathtubs etc), GI issues (IBS, Colitis, Crohn’s, leaky gut syndrome etc), and often impaired speech – making communication very frustrating for both sides. Therefore best babysitters turn out to be people that spend a lot of time with an autistic child or are properly trained to deal with one. We have been blessed with fantastic, loving and caring grandparents who look after our kids 5-6 days a week, after school, while my husband and I are at work. Without their help, we would probably lose our minds or be one of the couples in the terrifying statistics.
Every couple with kids eventually gets overwhelmed with daily routines, but it’s a lot more complicated when your child is like an alien from another planet, that doesn’t speak your language or does not understand the surrounding him world. So how do you make your marriage work?
1. Cling to the things you have in common – in our case it’s sense of humor, passion for God and one another, music, good entertainment, hiking and healthy food (cooking and eating, ha ha).
2. Carefully plan your time alone, arrange babysitting with grandparents, family or therapists whom you can trust!
3. Put some effort into making your date count! Ladies, put on some nice dress and heels, brush your face with a bit of makeup, sprinkle his favorite perfumes on your neck and simply, be your gorgeous self! Gentlemen, shower your wife with compliments and try to learn more things about her.
4. Re-discover one another. We all change with age – not only physically but emotionally and mentally. It’s really exciting to learn new things about your better half. You won’t be able to do that when you’re at home with kids running around, making funny noises like Tasmanian devils. Take time to listen to each other, without interrupting…
5. Spend quality time, unplugging any electronic devices, devoting these few hours only to the person you’re with. It’s not only exciting but therapeutic and healing.
6. Laugh a lot! Unleash the dragon and forget about Autism. Enjoy each other’s company.
7. Become lovers… Married life can fall into routine. Be creative! Physical bond is as important as emotional. There is no taboo in bedroom of a married couple. God designed us to get pleasure from physical contact with our spouses.
If you’re an Autism Parent, or simply your marriage lost its spark, accept my Date Night Challenge and ask your spouse out! Good luck and God bless.
One of those days…
Long day at work…I can almost hear my brain whistling!
A New job means new responsibilities, rush of adrenaline, air-coned air, hectoliters of green tea, coffee and noise. Lots of noise! Naturally all I want after work is some fresh air, sweet silence, a relaxing shower with essential oils, perhaps a take away dinner and a back rub…
Just after 6pm I went to pick up the kids from their guardian angels a.k.a grandparents.I must admit, I am blessed with the most loving and caring in-laws in the world!As soon as I walked in their house, Mom immediately fixed me some chicken sandwich with jalapeno peppers, followed by a cup of soup and cookies ☺ AND we got a bag of food to go!
As we packed the kids and all the gazillion bags in the car, I realized we didn’t have enough gas to take us all the way home… Normally, no biggy – you go to a gas station, fill up your car, pay and go.But not when your ASD son is the next Usain Bolt and Albert Einstein in one! Because it was “after hours” I had to get out of the car to pay, which was pretty far from where we parked. I promise you, the adrenaline levels that I experienced earlier today in the office could not compare to the heightened levels I felt while leaving kids in the car for those 10 – 15 seconds! You might say “just lock the kids in the car”, right? I gladly would, if I had the average Joes as my babies. In our case, Jake loves “solving the puzzle” of the safety lock and its mechanism.He’s fast and very handy when he’s determined, trust me… I had, however, no choice but to trust him and instruct him to STAY INSIDE AND NOT TO TOUCH THE DOOR! He’s outsmarted me yet again.I didn’t mention touching the windows, gloves compartment, rugs, my purse, etc… I might have run to the machine too franticly, scaring another lady that was slowly walking towards it.Poor woman stopped, turned around and drove off with screeching tires! It dawned on me then – I had been shouting and growling through my teeth as I was running to pay: “Jacob!!! No!!! Don’t!!!” I must have looked like a hallucinating loony. But I got my tank full in the end and was able to hit the road.
As we pulled up to the house I noticed that Bonnie (our ADHD Lab) got the “sacrificial quilt” out of her dog house and shredded it to pieces, getting all the fluffs out of it and turning our veranda into a winter wonderland! Cats have been meowing super loud tonight demanding attention. I’m sure they can sense my sensory sensitivity and they do it for fun (their fun, of course!). Gracie, our baby girl, has dragged her school bag on the wet floor, where Bonbon spilled all her drinking water, which makes me even happier. Jacob has started screaming out of the blue.
Probably his stomach’s hurting… Main suspect: pica ☹ I’m administering charcoal and hope it’ll soothe it soon…
Yup, it’s one of those days, folks!
Dress for the job you want!
It’s rather tricky to work from home – many distractions and other people don’t see it as a real job, so they often suggest “going out with the girls for a nice cup of tea while kids are at school” or “mommy, can I stay home with you after school? Are you working [meaning: going to the office] or you’re working from home today?”… So yeah, not easy to convince my 5 year old that I’m serious about my job when she sees me dressed in jeans and a T-shirt. I’ve heard it many times “dress for the job you want, not for the job you have!” And so if you want to be a regional director of some fancy company, you don’t wear scruffy sweaters and jeans or everyday skirts. You put on your best, crispy suit and wear some make up, have your hair and nails done, and walk like those corporate “females” in TV shows, giving others a cold look with your chin up high. Yeah, I don’t think that’s me 🙂
If I was to apply that saying, I should be running around town wearing spandex yoga pants suit with a long cape and a mask. Obviously I am aspiring to be a superhero of some sort – I want to save the world, be a 100% supermom, 100% super wife, 100% super employee and have time to cook and eat in peace.
Oh no! I’m aspiring to be a female version of Santa Claus! I guess my baby girl’s goal is to become a fashion designer or a makeup artist… No explanation needed. And as for my Booboo bear (Jacob), I believe he will become the first naturist engineer. He loves detailed drawings of an engine or airplanes; and now also insects or anything with wings..
And yes, he loves being naked, of course, at the least appropriate times! On the other hand, they say it’s better for your skin, if you let it breathe and get some sun exposure on daily basis, ha ha. I wonder how your kids express their personalities through the clothes choices they make (or lack of there of, in some cases).
By the way, working from home is a lot harder to do because you do your regular job and then take breaks to do all the house work (because you’re staying home, right?). That’s why I simply had to find an office job again (and I did!). I wish there was a refund for any Autism treatment and special education programs… I wish… The reality is harsh. The new statistics say Autism affects now 1 in 45 American children! And that’s just in the USA! Frightening to the families, yet glorious news to the medical society…
I think it’s time for some ginger lemon tea. Anyone cares for some? 🙂
Bouncy Balls and Brilliant Minds
One of the best investments we have ever made in our Autism Household was to get fitness balls. I initially bought them for my husband and myself (resolutions to get back in shape!), but eventually they were repossessed by our little ones!
Jacob can bounce on a ball for a very long time. He prefers one specific corner in our living room, right behind the dining table, where he can hide behind it and chill with the ball. I often catch him in the most bizarre and sometimes dangerous looking positions – standing on his head, while on the ball, etc. I had no idea he was so flexible! His muscles are getting stronger, yet he’s still very lean, like a fine piece of lamb ☺ I must be hungry, since I compare my boy to a fine meal. Tonight it’s a chicken madras night! Love hot spices in my food. Funny enough, Jake enjoys very salty and sour flavors; he’s not too crazy about bland food. It must always have a kick to it. In fact, I was really concerned at one point by his uncontrollable cravings for salt. He can eat a teaspoon of it, just like that! But I’m not going to let him destroy his kidneys, so I limit the daily intake to the pink crystals (Himalayan best!).
School is going great. Jake enjoys his classmates and adores his teachers. Sometimes he surprises me with how much he actually knows! I know as parents we sometimes get too caught up in our professional life that we may occasionally miss out on our kids’ successes… And then we experience this “bulb above our heads” moment and see them in a brand new light. I’m looking at Jacob and admire his sense of humor. He’s so cheeky and already knows how to get what he wants. Like the other night he stood in our bedroom door, holding his pillow, waiting for the invitation to jump into our bed… Of course we sent him back to his room and he usually obeys. But he doesn’t give up so easily. He came back sneaking around, slowly popping his head through the door, without making any noise. He was definitely checking if our alertness dropped to “go for it” level. But we sent him back to his room again. And then the third time, he used all ammunition of cuteness and pity (like Puss in Boots in “Shrek”), where his big blue eyes were reflecting the light of the TV and his hands clenching the pillow, as if his life depended on it. Then he was slowly moving forward, step by step and took advantage of a perfect moment when both my husband and I were melted from overwhelming cuteness saying “awww” at the same time… That was the second Jake just dived in to our bed and of course won, staying with us all night, all cuddly and warm…
To sum up, our ASD geniuses are brilliant and full of surprises. I am learning business approaches from Jacob 😉 Shhhh, don’t tell my boss, ha ha!!
Winter creativity and autistic cats
OK, someone should arrest Queen Elsa before global warming, or should I say freezing, settles for good. No doubt, the winter season is upon us… In our Autism household that means more indoor activities, more demand for creativity and planning and of course a lot more patience [sigh]… I’m pretty good at arranging my daily agenda at work but useless when it comes to a daily schedule for our boy. I mean, how long can one draw/ color for? Or do the puzzles… Jacob is a super energetic 9 year old with very vivid imagination (he takes after me, I guess). He needs to be engaged in various activities, games, exercises, etc… Constant entertainment! Just like our cats. I said it before, I truly believe cats are autistic – they don’t respond when you call them by their name, they see you as their annoying pet (called human); very often they get fixated on one tiny detail of a toy and can spend hours playing with it. They are neurotic and show affection on their terms alone! They run from strangers and hate being picked up or petted by them. Cats like to be left alone. They will come to you when they are hungry, demanding attention. They will knock your stuff down just for fun… Conclusion: CATS ARE AUTISTIC! I believe that’s why they immediately bonded with our Jake allowing him to do things to and with them, that others can only dream of, ha ha! Recently he discovered the “claw mechanism” and is truly fascinated with how the claw comes out of a soft paw when he presses certain points. Genius! Kristoff (the complete cat) is a lot more patient with all the experiments that Jacob is performing on him. Sven on the other hand is a lot more neurotic, probably because he has lost his tail in an accident (or so we think!). Poor guy barely made it, wearing a massive lamp shade (collar) and a lot of bandages on his rear leg… He looked so pitiful! But guess where he wanted to sleep to recover? Yup, on Jake’s bed, right by his feet… I was pleasantly surprised seeing how gentle my boy was towards Sven. I know for a fact autistic people have compassion and empathy towards other beings. They are a lot more sensitive to others’ suffering.
That being said, our cats are “enduring” the affection that Jacob is showing them. They are really gentle with him and never try to scratch, like other cats we know. I believe it’s because they see him as part of their herd.
Hey, if you have good ideas how to entertain an ASD with ADHD during a winter shut down (staying home time!) please share them in the comments section. I’d love to hear from you!
I wish our kids shared some of my passions, like love for combat sports (Krav Maga). I guess for now dancing and puzzles will have to do!
Stay warm and pet a cat!
Till next time, folks!
Urszula Holub-Tinsley, MSc in Social Rehabilitation and Probation. Neurotypical mother of 2 kids (one of which is on the Autism Spectrum).
Stats and Costs
Did you know that apparently 3 out of 4 marriages with kids on the spectrum end up in divorce? That is heartbreaking, really… I can’t judge couples who decide to separate, because I know how hard it is to keep that love burning when everything is in the shadow of Autism. My marriage is far from perfect but our foundation is strong, built on our faith, friendship for one another and similar sense of humor. We’ve had our ups and downs but we’re growing stronger, as a unit. I wouldn’t be where I am now if not for the unconditional love of my very own superman and a partner in crime a.k.a my husband.
I am currently between jobs but for the last 9 months I have been working from home office, trying to be the salesperson of the year, a super mom and a perfect housewife. Guess what? Yup, Mission Impossible! I know many moms of autistic children who sacrificed their careers to be home with their kids (Huge respect, ladies!). It’s not like being a staying at home mom, which is already quite a job! This stay at home Mommy is a speech and language therapist, an OT, a music therapist, a nurse, a teacher, a friend, a master chef for picky eaters and a wrestler in one. That’s normally only until the breadwinning daddy comes home… You know where I’m going with this. Autistic kids need a lot more attention than an average Joe (especially when they are non-verbal). However, sacrificing career means one less income, which means a tighter budget-ergo not enough funds to pay for kids’ school, therapy, special diet, doctor appointments and so on and so forth! That only puts extra pressure on the couple, who can sadly bear the physical manifestation through sickness (cancer), and mental breakdowns. This essentially sets the stage for disaster, depression and general “blah”. Not forgetting the guilt on both parts, which is a no win-win scenario! We’ve been there, done that…
We’ve counted it all and realized we need at least 2 decent incomes in order to secure all the basics for Jake – private school with a personal assistant, therapies after school, diet and treatments. And then covering our regular costs of living, like gas for our car, paying our bills, getting groceries… I know we’re not an exception here. Sadly “costs of Autism” go up, as the kids grow older.
It’s hard to find an employer who’d understand such circumstances and agree to flexible working hours or emergency calls due to Autism related “events”, isn’t it? But everything is possible! If only you force yourself out of that misery and discouragement, you will be ready to conquer the world, because YOU ARE AWESOME! Not many “regular” parents out there would be able to walk in your shoes. God entrusted you with more, because He knows that only YOU are able to look after and love His special angels the way He does!
Go share your love!
Have you ever heard of pica? Basically it’s a disorder that makes you eat non eatable items (sand, plastic, clay, play-dough, etc). I believe it’s related both to sensory issues (kids may like the texture or flavor of things they try to eat) and to the bio-chemistry of an individual. I’ve noticed that with Jacob this condition gets worse when he’s on different medications and when he’s seeking attention; he knows too well that we’d break our necks to chase him in order to prevent any yukiness entering his mouth (and digestive system, yikes!). Yup, we’re far from being Kenyan sprinters, so Jake often wins the chase! Our “neurotypical” friends already got used to hearing us scream: “Jacob! Stop eating the wall!” or “Leave that poor spider alone! It’s not food! Was that even a spider? Oh well. Good source of protein, right?” Sometimes I wish he was more grossed out by the things he tries to eat, you know? It can be very frustrating when we all walk down the seaside, enjoying our family day and our big boy spots a splashed, trampled old chewing gum that in his mind must look like an exotic candy he simply cannot resist…
Recent blood tests didn’t indicate any mineral deficiencies except for slightly lower levels of calcium (ergo eating the wall – body is trying to get the mineral it needs, duh!); therefore we’re on calcium, magnesium and zinc treatment but we need to wait for these supplements to really kick in. Tonight I’m going to add Bentonite Clay which worked for us in the past! (http://draxe.com/10-bentonite-clay-benefits-uses/). It’s a work in progress but I hope Jacob will grow out of it soon.
He’s doing great academically, following general English Education curriculum. He attends classes with his personal assistant, whom we call his “guardian angel”. She’s watching our boy like a hawk, helping him when he’s got sensory overload, etc. We’re truly blessed. The only obstacle for him to participate in more school activities and classes is our dear “frenemy” PICA! Jacob has a great open mind and the purest soul you could ever imagine. Not a single mean streak in him. He enjoys his cooking class and the arts and crafts. Alas there are too many “attractive” items in the classroom, that he’s determined to eat, or should I say devour! Glue stick, raw wheat flour, yum! I wouldn’t mind him eating it, if it was “safe”. But glue can actually cause some serious problems in the intestines. So he’s being physically and verbally blocked from grabbing the glue, which often triggers tantrums that result in him leaving the class. Vicious circle!
It’s a shame that he’s missing out on activities he loves because of the uncontrollable obsession to eat stuff he’s not supposed to. Right now, pica is our biggest problem connected to Autism. That and the tendency to run away. But I’ll write on that another time.
Have you ever wondered where the saying “I have a gut feeling…” comes from? Well, I have but didn’t bother to check the origins of it. I am a person that never reads manuals or instructions, and hates cooking following recipes. I believe cooking can be an art too. It’s like painting, when you put different colors together and accent details with stronger brush strikes here and there or make it soft toned like watercolors… Gut feeling is commonly used to describe strong intuition or a feeling without “thinking”. That’s not a coincident. Our brain and all body functions are strongly dependant on our guts! I have read the amazing book by Dr. Natasha Campbell (http://www.gaps.me/), who explains in details how it works!
As an Autism Mama Bear, I am determined to help my boy get better through basic nutrition and supplements. It’s not that I am against conventional medicine and neuroactive drugs prescribed by psychiatrists however I am a strong believer in God-given medicine, like essential oils, right kind of food, acupuncture, massages and any other method that doesn’t have devastating, lifelong side effects.
A few years ago we met a great man (an adult with Aspergers), who immediately felt compassion for Jacob, identifying himself with our boy’s struggle. As the time passed, we got to know each other better. He was feeling more comfortable to share his “secrets” with us. You know when you have an autistic child you develop this “A-dar” (autism radar) – sorry, that’s “Ula’s language”. [As you keep reading my blogs, you will soon learn that I make up words, when I can’t think of an existing one. I just refuse to follow “the rules” ergo search for words in thesaurus]. Normally we sense ASD person right away, but in this case it was different. Our friend was more like an angel than a human (very honest, polite, softly spoken, old school gentleman, treating everyone with respect despite their social or economic status, loving his Bible and our church, etc.) So naturally when he told us he is autistic, we were blown away! He learned to control his autism through a very strict routine and a diet he had composed, while experimenting with different foods and supplements.
It’s so important to heal the gut first, so that the rest of our system can function properly. I will share more details on that “diet” in my next posts. It’s really worth trying it out! Basically it’s all about organic products including good kind of fats, protein, no dairy or gluten, a lot of naturally fermented vegetables and drinks, bone stock and NO SUGAR! Plus supplements you probably never heard of, that have been used by our great grandmothers, like carbonated charcoal and organic clay which work as natural chelators, clearing our blood from heavy metals and neurotoxins… It’s fascinating, how God hid His medications in nature. We just have to know where to look for them.
Stay tuned, folks! More “Au-some” discoveries next time!
Welcome to my blog!
As I start my introduction to my new blog featured on ICare4Autism, I am excited at this opportunity to make an impact in the autism community. Looking back to 2007, when one winter morning a beautiful boy was born (through an emergency C-Section), and changed my life forever… Pregnancy was just like in “What to expect when you’re expecting”. We saw Jacob growing inside, chunking up till the day he was born. Our champ screamed his lungs out to let us know he was fine. Perfect in every angle! His mental, physical and social development matched every milestone – first smiles, eye contact and laughter, walking and talking (few words) before his first birthday and putting 2-word phrases at the age of 18 months. He was fully vaccinated according to the local immunization schedule (all gazillion shots!). Happy little guy loving to be the center of attention. Alas, around his second birthday we noticed something had changed. He no longer kept eye contact, stopped talking (making “noises” instead), using hand stereotyping etc.
Studying developmental disorders in University, I remembered the symptoms of Autism. I started having some suspicions that our son may have some mild form of ASD. Of course my family and I were in denial for a long time. Not our boy! That’s ridiculous! How many times had we heard: “many kids, especially boys, are late talkers” Anything but the “A” word, right?
As the worrying symptoms had become more obvious (he never pointed or asked questions like other kids his age, never really engaged himself into playing with peers) we knew something was wrong. We met with many doctors and specialists. They told us bluntly: “Your son has Autism and it’s a lifelong condition but with early intervention program his chances for normal life may increase”. What do you do when such news falls on you, and all your hopes crumble like a chocolate chip cookie? We went through “stages” of: denial, anger and frustration, huge disappointment, guilt, helplessness, sadness, depression… You name it – we’ve been there. But then we noticed his therapies were slowly bringing him back to our world. There was hope in our hearts again!
Next step was reshaping our dreams as a family. The thought that Jake would never play football with his daddy like other boys, or that he’d possibly never say “mama” ever again was hard to swallow… We still struggle with that one occasionally. It’s not getting any easier but we sure do get stronger and more equipped to be Jacob’s parents. Where do we get this secret super power from? GOD – the real Hope for the broken hearted!
A Mom’s Diary
by Ula Tinsley, MSc in Social Rehabilitation and Probation & a neuro-typical mother of two children, one of which is on the Autism Spectrum. Her blog focuses on family’s daily experience with autism, told from a mother’s perspective. If you have a child on the Autism Spectrum you will find comfort and inspiration in her weekly stories.