Levelling the Playing Field : A Future for All
Autism awareness is an enormous driving force in my life as you know , having been blessed in my personal life with my own great , big , gorgeous Ollie and also in my professional life where I get to work with and learn from the most inspiring , strong and ABLE children and young adults with special abilities .
Whilst it’s positive to have an Autism Awareness month where we all hopefully do that little bit more to raise not only awareness – but true understanding and support of autism – I still feel this is something that needs to be done all year round .
Autism has reached epidemic levels worldwide : simple “awareness” is not enough . The world needs to sit up and really ” see ” these amazing kids and all they have to offer , instead of discarding them or boxing them in . They need to be heard and included , to be able to dream, achieve and contribute .
By different or special abilities I do not just mean the autism spectrum : I’m talking about a whole beautiful rainbow of kids with ADHD, ADD, LD’s , dyslexia etc … We all have different ways of expressing our talents , strengths and passions . We all deserve the chance to shape our own futures .
So for me April is not just a time to raise understanding and positive support but also a time to celebrate our differences and to educate society , schools and employers about ways to include all those different strengths , passions , obsessions , energy and ABILITIES that so many of our special young people have to offer .
I’ve personally seen several of my own students go on to achieve goals they would never have once have thought possible .
So April is a time of hope and celebration as well as education and awareness.
I know a beautiful young man with ASD, LD and Down’s syndrome who five years ago couldn’t cook an egg or budget but who had the biggest heart and gigantic personality. Everyone loved Anthony and three years later when he used his newly acquired hospitality and catering skills to do work experience , he was the star of the show . Everyone asked for him personally to serve them . He should had his own TV show. He knew everyone loved him and he adored it and played up to it ! He went on to gain a paid apprenticeship with a very prestigious hotel who spotted his talent , ABILITY , honesty and sheer pride in working and wanting to please .
Another young lad with ADHD and ASD who I used to see for weekly massages for months , used to literally jump and bounce repeatedly and often . He has gone on to swim for his country and take part in national trampolining competitions . It’s about finding the strength or gift – the song of each person – and growing and channelling it. We all have something to give , something we are good at!
Another example ( I have so many ! ) , Jack , a 21 year old young man with moderate to severe dyslexia who struggles every single day at his mainstream schools has the most supportive art teacher who helped get him through . I loved hearing all about his art and 3D incredible ways of thinking during his weekly massage sessions with me . He was a unique and creative genius !
Jack described the world around him , interacted with it and expressed himself far better with brushes , paints , canvases and cameras than I ever could with words and he is now planning on taking his Masters in fine art .
So let’s use April to shout from the rooftops about how incredible these special abilities are and to focus on the many abilities and positives they add to a world that cannot survive if it’s just a monotone grey . There is never just one path . Never just one colour . Life and the human race are so rich and diverse . Let’s celebrate and support that !
See you next time .
Until then , keep believing and keep shouting from the rooftops !
Author : Indian Head Massage for Special Needs
See below artwork and photography from Jack
The World is an oyster – for ALL our children
What was once a journey between my son Ollie and I , a constant battle to fight for his voice and his future and to burst out of the boxes everyone tried to put him in , has now become a mission ! I never dreamed our lives would grow the way they have nor that we would help and touch so many ; that we would bring hope to so many exhausted , desperate or isolated families . Our private journey of utter heartbreak at times , achievement against all the odds , enabling my son when at times it felt like everyone was disabling him , has given me a strength and sheer focus to do all I can to ensure that this doesn’t happen to others . To make the world a fairer place by starting in my own corner and to level the playing field for those who have different abilities to bring to our society . To watch your child’s voice , their future , be removed by those who do not understand and may not have even received training , is the worst feeling and I wouldn’t wish it on anyone . We all have a song – a gift !
I am abundantly lucky to be surrounded by kids like my Ollie every day . Remember Jim , the young lad I told you about who at 13 proudly informed me that a jellyfish has 64 bottoms ? His mother , a truly strong and wonderful lady , became so tired and disheartened , she actually believed her son was so disabled that she tried to get him into a college for moderate to severe disabilities . He was turned down thankfully ! He now has the marine enclosure at a small zoo absolutely packed out with enthralled tourists and lives independently on site because the employer spotted his passion and energy . I could actually kiss that employer
Opening Up the World, not Carrying it !
Last time we talked about how arms show visibly how we are feeling inside : what we are holding onto, what we need to let go and whether or not we are embracing life.The arms ,if you think about it , lie either side of the heart and lung areas and as we discussed last week, the heart is our emotional centre. When we are tense, stressed and unhappy, the cells literally begin to shut down as vital blood, oxygen, nutrients and fuel stop getting in as the body adopts fight or flight mode. When we are happy everything literally flows and the heart, where we feel about things right now, is the conductor. So it’s important to keep it happy, open and flowing ! Next time you are with a depressed,frightened or anxious person, or someone with mental health challenges, look at how they clamp their arms to their sides, self protective, stiff and closed. With massage, it is a beautiful gift to help someone feel carried, supported, strong and nurtured – and to watch the layers melt away , to open them up to life again, to gently open their hearts and lungs.
The origins of the main muscles in the upper arms are found in the shoulder blades ( where we carry our load) . Tension from here can spread o tension in the neck and head.
The upper arms are so important for upper body movement so when they are tense, movement is tight or restricted.
It is fantastic for opening up those emotional and mental layers. I’ve found it to very effective when working with those on the autistic spectrum , those who lack confidence and for those who have been damaged or frightened away from life or with mental health challenges.
It is also another fairly non invasive area to work on where someone dislikes having their head touched. By opening up the arms, lungs and heart, boundaries start to melt away and they begin to want to embrace more things, including touch elsewhere as time goes on.
The arms are just so easy to work on so here goes…..
TECHNIQUE ONE : Gentle Squeezes
Stand behind the recipient and working from just above the elbows upwards, encircle the arms with your thumbs in front and fingers behind and gently but firmly squeeze. Hold for a few seconds then gently and slowly release. Repeat this again at a point roughly on the mid arm , then again just below the shoulder. You’re covering the main muscles of the arms with this work ; the triceps, biceps and deltoids so for those who have physical “ disabilities” or stiffness, this is wonderful.
Repeat at least three times.
It loosens tension and encourages lymphatic drainage, so important for our immunity and well being.
It also promotes feelings of trust, being held, being supported . It’s reassurance and safety as you build up to really getting that heart and those lungs open again. It promotes feelings of being held, supported, a load shared thus reducing overwhelm. The gentleness of this also ensures the recipient doesn’t feel restricted.
I love this technique and it’s much easier than you might think.
If you imagine it’s a really hot, gorgeous day and you are flinging wide open some beautiful French doors to let in the sunshine, you’ll be able to do this in no time !
Standing behind the recipient. make your hands into loose fists. Place the middle section of the fingers between the two sets of knuckles onto the arms just below the shoulders. ( the deltoids). Then using a beautiful ‘ opening up the french doors’ movement, push outwards straight in front of you as if you really are pushing back double doors, and come off and away as you reach your elbows. So it’s a quick, quite firm movement from pushing out and away from the fists up the elbows as you roll off. I hope that makes sense ! I need to start making short video clips of each section…..if you all felt this is helpful.
Repeat this at a middle section of the upper arm ( the biceps) and lower down just above the elbows ( the triceps) Don’t worry about being exactly over the muscles too much , just enjoy he movement. The upper arms are generally not big, especially in a child, so you’ll be covering them !
Repeat this path at least three times.
The muscles are really loosened in the upper arms and shoulders . it really feels like someone is physically pushing all your stress and burden off of you and helping you to release negatives and tension. It’s very therapeutic to give as well as to receive this one.
Anger, fear, tension and trauma all begin to give way to a much deeper relaxation. The lungs and trust start to open much more deeply. Release , safety and comfort are promoted. Tension feels physically pushed away and the whole heart area feels as if it is being physically opened.
TECHNIQUE THREE : Squeezes and Lifts to the arms
Still standing behind the recipient, encircle the arm just above the elbow each side in between your thumbs and fingers as shown above. Do you remember last time I told you to firmly and gently squeeze ? Well you’re doing exactly that again but this time you’re going to very slowly and gently lift the area at the same time. So it’s a slow, gentle but firm squeeze and lift simultaneously. This is actually gorgeous to receive : it’s like someone lifting huge bags of groceries from you and putting them down.
Repeat this at a middle point on the arms, then once again just below the shoulders.
Repeat the whole path from the elbows up, at least three times.
This mobilises the muscles of the upper arms, stimulates lymph flow , the circulaton of blood and oxygen, and releases tension big time!
It is stimulating and invigorating but deeply relaxing and physically feels as though you have discarded all the things you don’t actually need to be lugging around. Clients always report feeling safer and much lighter. This technique physically embodies that letting go of tensions and troubles. The recipient feels looser, less stiff and as thought they are physically opening up to all that life has to offer . Anxiety and stress are noticeably alleviated or eliminated. The lungs – and trust are opening up.
TECHNIQUE FOUR : Ironing down the arms.
I know this sounds like some form of medieval torture but it’s actually blissful to give and even more wonderful to receive.
Stand behind the recipient and encircle their arms as before in your hands, This time ensure the thumbs are on the inside, as above, and your fingers behind.
Starting at the top of the arms,keeping a firm hold ( but not so you are pulling anyone downwards ! ) , run or glide your hands all the way down to the elbow. If they are seated in such a way that you can get all the way down to the wrist, go for it – we need to release them of as much of their tension and “ stuff” as possible !
Then go up to the top of the arms again and repeat the path. You’re always working downwards here , to release the tension.
Repeat at least three times, six if you can, because it’s just gorgeous.
This technique not only pushes all the stress and tension away , it also calms and soothes after all the stimulation. Emotionally and mentally as well as physically, the effects can be instantly felt here and encourages huge feelings of lightness, release, calm, security, feeling held and nurtured, feeling safe. Trust is really starting to open up. As I said, time and again i’ve seen how working here and on the shoulders opens those nervous of touch into even letting me eventually work on their heads.
So there you have it ! You can help reap such benefits, do such great work, without even touching a head ! By placing the child or adult in charge of their own treatment, their own healing, you are building trust and teamwork. You’re not just someone else ‘doing stuff’ to them. You are empowering each person from the start by involving them, showing them where you’d like to work’ but allowing them to build up slowly, having what they need . Where they want it the most is always where they need it the most. It’s like being a sweet counter with all the choices in glass jars, only it’s a massage menu – and before you know it, they’ll be ordering the lot and having complete treatments ! The deep listening on the part of the person giving the treatment is the foundation to this work. The voices of these children or adults with special abilities are then being heard from the very first session . They will start to grow and find their songs from that very first session.
Next week I’ll share some more research and techniques as we move onto the neck. That area is a bit like marmite … you either love i or hate it !
But whenever I find someone who hates it, 9 times out of 10 they eventually end up trying it and I convert them !! Im a bit persuasive like that … but they aways feel they’ve made that decision. It’s that listening and building trust again.
Until next time,
Take care and keep up your courage always for our incredible children as I know you do,
Author ‘Indian Head Massage for Special Needs “
How we feel emotionally and mentally has a direct impact on our physical bodies , right down to how our cells are programmed. Yes , we are in charge of that ! If we are relaxed and balanced , we are in that ” parasympathetic ” state of feeling open , harmonious and thriving . When we are stressed , we are in the dreaded ” sympathetic ” state of fight , flight or freeze . Quite quart from the blood flow instantly flowing to all the muscles instead of to the all important frontal lobe and creativity , along with the stomach , kidneys and liver , the flow of blood , oxygen , nutrients and fuel to the cells stops getting through . This ” sympathetic ” state – which I’ve always thought didn’t sound very sympathetic at all – is designed for emergencies only , like an alarm . It was never meant to be used long term . Amazing research and studies carried out by doctors such as Alexander Loyd ( The Healing Code ) have proven this scientifically .
How we feel programmes our very cells which we are entirely made of . We are writing our own hard drives in effect .
As previously discussed , many people , especially children and young adults , with special abilities including autism , are proven to be under more stress than the average person . Their bodies are producing higher than normal levels of stress hormones .
This is where the power of therapeutic touch really goes deep.
Studies and research ( such as the Harlow monkey experiments ) have long proven that touch promotes bigger brains , better social behaviour and interaction along with better physical health . Within 40 seconds of touch, oxytocin , the hormone of wellbeing and nurture , the antidote to stress , is released followed by those all important happy and pleasure hormones , serotonin and dopamine . It really is win-win !
With effects from the very first treatment …
So think about this as I move onto sharing with you all information and techniques relating to the arms . Our thought patterns are ingrained into our very language !
Are you or your child up in arms ? Self protective or putting up an armour ? Or are you embracing life and all its possibilities ? What are you holding onto ? And what do you need to let go ? Are you hitting out or are you wide open?
Many of the children I work with arrive with their arms clamped to their sides – a classic sign of long term stress or even depression. This is why I love to get to people’s arms – especially parents too who have had their arms full for far too long and maybe need thirty minutes to be carried in someone else’s . ( mine are little but they get around a lot of people !! and I’m much stronger than I look ! )
I keep telling you this is so much more than “head massage ” !
By working on the arms tension is released and survival mode opens up to thriving mode . The heart , the emotional control centre of the body and our wellbeing ,is opened up again . The recipient literally opens up mentally , emotionally and then physically and begins to embrace life once more .
I’ll share with you exactly how next week !
In the meantime take the greatest care and as this blog is about arms , I hope it’s not too cheeky to give you all a hug .
See you next time ,
From a seed to a tree … to king of the forest !
I need this week to share something TREMENDOUS with you all !!
Do you remember how at the end of my son Ollie’s first week at university he wrote to me and said he had ” grown from a seed into a tree in a week ” ?
Well he now owns the forest !!
I am so proud of him because he just achieved a FIRST for his first semester’s assignments at university !! It’s been his first time ever away from home , coping with so much and learning as he goes . The workload and stress has been intense to say the least and Ollie has wanted to achieve perfection and a First from the start . It’s the only way he can work , bless him .
We were both so anxious when he hadn’t received his grades yet… He was SO excited when he finally got them that I could hardly understand him over the phone. He was beside himself with joy ! He got the highest grade possible for one of his poems , The Joker.
It gets better ! ….. He then read these poems out as performance poetry in front of scores of his peers at the student union . Another incredible first ! He has read poetry out at literary festivals mostly in front of attentive adults as he grew up and I’d take him along after his dreams of English were destroyed . But he has never put himself up there and read his work to his peers !! Even the very noisy background distraction didn’t put him off – amazingly ! People were clambering to the front to hear him . I’ve shared the link of the video of his performance on my Giuliana Fenwick therapies for Special Needs Facebook page .
When I picked him up from the station last Thursday evening , he was still visibly shaking with emotion . The video had received over 600 views and people were mobbing him afterwards and clapping him on the back . Strangers were approaching him to talk with him about his poetry that evening and the next day on campus .
” For the first time in my life Mum I’m surrounded with people who actually believe in me” he said in the car . How amazing – but also heartbreaking – is that ? He’s waited 19 years !
I am welling up all over again writing this because this is the boy who was told he wouldn’t be allowed to even attempt higher English exam papers in spite of being in gifted and talented sets throughout middle school for English . That decision all but broke him and was the first time the word ” disabled ” was ever uttered in our home – by Ollie himself – through torn and broken sobs. His voice removed , his dreams destroyed , he spiralled so terrifyingly he became suicidal at its worst point .
As you now know , I sent his work off to published authors who all wrote back telling Ollie he was a writer already and to never let school define him . The rest is history ……
My son is living proof that these children and young adults are so much more than a diagnosis or a label .
You should never , ever be defined by other people’s ignorance or limiting misconceptions and beliefs surrounding that label .
No child should ever be written off or have their futures broken or have decisions made about them based on ignorance , limitations or fear. I work with children just like Ollie , of all sorts of different or special abilities, and they are incredible , talented kids if you just take the time to discover their passions and what lights them up . With the right support and belief matched to that child , they completely bloom and thrive .
We all have unique gifts and abilities . We all have something to give . When you hold a child’s future in your hands , think carefully about the decisions you make – or the decisions made by others that you accept .
Ollie once had his voice removed . He fought back and found a different way . He is now thriving reading a creative writing and publishing degree which for him is even better than the English which was taken away from him .
I AM SO PROUD !!
My Side of Eden in an English Garden
Flies, oil-specked, dance their night wraiths on the
skinny buxus branches
Another follows their soliloquy. Tamarisks of air lance
their hushful blows in the hive.
The doubloon above oscillates to the milky muse of the
cool air. Taking a breath, I look at the garden, spurning
me looking poppies in there hundreds chase my cheeks
in drapes of fire. I try to silence all his noise, but am
pushed asunder the red satin cloth, so that I am choking
in this button-press of heat and redness-its unbearable.
Ouch! Stung on the mouth by a deity ray, I retreat to the
doorstep cacodemons lie in dishevel on my burning
hairs. Afraid to cry, to anoint myself even more in this
deadly rush, I close both the shucks of my eyes till the
wolfing hour of day threshes them wide so that gold
glimmers in their pods.
Beautiful techniques for the shoulders to centre and support
Last week we shared how working on the shoulders is tremendously grounding ; very beneficial when people are feeling frightened or overwhelmed.
The Shoulders and the load we carry
I’m itching to share some techniques and get you all going! So here goes! It’s easy and you and your children will LOVE it!
Technique One: Thumb stroking up either side of the spine
Technique two: knuckle rotations down either side of the spine
Technique Three: whole hand or fingertip rubbing up either side of spine and behind shoulders
Technique Four: Light hacking behind shoulders and down either side of the spin
Technique Five: whole hand brushing down behind shoulders and down either side of spine.
I hope you have fun doing these and see the benefits from the first time you try them. Always ask the child permission and always let them be in charge of what they want within the massage. That listening and actually feeling in control of something boosts them to no end and wins their trust so you can do great work together.
See you next time,
author: Indian Head Massage for Special Needs
TECHNIQUE TWO : FINGERTIP RUBBING
TECHNIQUE THREE : SHAMPOOING
TECHNIQUE FOUR : STROKING BACK THRUGH HAIR
An interruption and urgent update on Ollie – January 25th, 2017
It is actually my second “rant ” – which isn’t bad I suppose out of 34 blogs – and I promise to be back to my normal jolly, lovely therapist and author self next week! And I have to spit this out because right now millions of parents everywhere will have their children going through the exact learning curve I’ve just had this week. Talk about learning on the job !! Still, life is about growing and we can only do this if we are learning.
Firstly, I need to say AGAIN how PROUD I am of my son. Not only did he achieve a place at his first choice university against every imaginable and conceivable odds but I half killed him with the most powerful, explosive, emotional hug when he got his grades and in that instant all the fighting, heartbreak and struggle had paid off. Since then, with the gentle support of widening participation, he has had a steep but successful learning curve of life skills and independence. Due to his autism he can access a flat on campus for his second year. However , so strong and flying in independence is Ollie , “I need to learn to be a man, Mum”, that he’s decided to go out into the world and get a student flat with friends . Outwardly I’m being encouraging and confident for him but inwardly my heart hurts and lurches with fear – but I have to let it happen and just be a safety net.
Well, in a word, the world he’s gone out into is ruthless. And these young kids, especially those with special needs , are highly naive and vulnerable; easy prey. Imagine my plunging fear when Ollie rang me at work and announced proudly that he and three friends had viewed a flat, that he had a meeting with the agency and landlord the very next morning and that he had just parted with a non refundable £500 of his student loan just to take the flat off the rental market! He told me has to pay an eye watering £800 by the 13 th June to the landlord as a ” retaining fee” on the property for July and August but isn’t allowed to move in until September . He had to hand over his debit card details as surety. I had to work that morning so was utterly powerless but another concerned parent “attended ” that meeting via Skype. Good thinking!
Result: this is all legal and normal practice for students!! Can you imagine charging rent to adults for two months they will never use and this is non refundable ??!! It emerges that these kids , scraping by on meagre student loans, will have to cough up at the same time as paying university rent ! What this really means is …. parents have to. I have had to sign a legally binding guarantor agreement.
For six years I saved every penny I could for my boys to go to university. In a private matter , I had to part with this to buy my family’s freedom and safety ( a matter I cannot discuss here ) so my boys had to take out loans, like so many their age. After all this fight and Ollie’s personal fight to even make it to university in the first place, and with no one but me to rely on, this is the reality. Good job we are a courageous and strong little bunch. Well, a small gang really!! Thank goodness I’m a very industrious , proud, tenacious and busy little bee. I’ve lined up a tonne of work day and night between here and June and even if I have to sell our home to get Ollie through his degree, I believe SO much in him and am so proud of him, I wouldn’t think twice. But I know it won’t come to that.
As a tip to parents like me , I don’t know if you have the equivalent in the USA , but here in England we can apply for something called PIPS – Personal Independence Payment for people with ” disabilities “. If an award is made , you can then apply for housing benefit /relief . It involves hideous amounts of forms and an interview but I’ve now got the ball rolling.
We have to fight for our children and teach them how to. And actually this experience has shown Ollie a valuable wordly lesson that life doesn’t come easy. He is worth all the investment and we will find a way. He will complete his degree if it’s the last thing I ever see. Education is a RIGHT and should never be such a fight. University shouldn’t be for just the “regular” or wealthy kids. It should be accessible and possible for everyone of all abilities and from all walks of life. I’m now on full warrior mum mode and have probably made Dr Weinstein lose yet more hair over another blog that’s busted through the word limit. Take care everyone – keep fighting and keep believing ! I’ll be lovely again next week I promise!
TECHNIQUE ONE : THREE FINGER ROTATIONS ACROSS FOREHEAD
TECHNIQUE THREE : STROKING FOREHEAD
Those Raging Hormones – January 9th, 2017
Before Christmas if you remember, we were talking about hormones, in particular serotonin, the happy hormone, and dopamine, the pleasure hormone. Hormones control mood, aggression, sleep, sex drive, sexual reproduction, stress, ( levels of cortisone, the stress hormone, are proven to be significantly higher in children with autism spectrum ), growth and metabolism, to name a few! As our special children face puberty, they are contending with huge hormonal changes as well as the daily challenges of being different in a mainstream world. Massage helps terrifically in stimulating but also in regulating and balancing the right hormones, relaxing the recipients so deeply that their entire well being is nurtured and the challenges and issues alleviated and longterm even removed in many cases. I watch “ my “ children go from surviving – just _ to thriving.
TECHNIQUE ONE: FINGERTIP PRESSURE ACROSS FOREHEAD
TECHNIQUE 2: STROKING BACK THROUGH HAIR
TECHNIQUE THREE: SHAMPOOING
TECHNIQUE FOUR: NECK SQUEEZES
TECHNIQUE FIVE: TEMPLE ROTATIONS
I hope, as I always do , that you like it … – January 9, 2017
The very warmest hello to you all! I hope 2017 brings you light, magical times and love. I’d like to wish everyone the deepest joy, growth and peace, in particular to those families blessed with “special children” like my Ollie. May 2017 will be overflowing with hope, strength, unfaltering courage and always wonderment at all the gifts your children bring, and celebration of all your children CAN do rather than can’t. Remember, our children are the seeds of the future. If we don’t believe in them, no one wise will. Their stories begin at home. You know your child – don’t let others define them: even professionals can be proved wrong. My own son is a glowing example.
Speaking of seeds, do you remember how at the end of Ollie’s first week at university he told me he had “grown from a seed into a tree”? Well no truer words have been said and I saw just how much all over Christmas. My beautiful, loving, open hearted , affectionate boy has grown SO MUCH!! Keen to show off his newly learned life skills, he cooked some meals for us all, massively got into my good books by tackling industrial sized piles of washing and ironing and went grocery shopping. He budgeted his money so well all term he could even buy very thoughtful and touching gifts for us all. He arranged to see friends, planned his route and travel to visit them as we live remotely and when a train was unexpectedly cancelled , something that would have previously unleashed total panic and meltdown, he found the ticket officer and asked him to write down an alternative route along with a change of train and platform number, just as I had showed him weeks before.
All holiday Ollie kept saying how happy he was to be home, how he felt “solid ” being with us all again and how terribly deeply he had missed us at times. I reassured him that we would still visit frequently and send him money for a rail ticket home anytime he wanted it. (he never likes taking the money!) Towards the end of the holidays Ollie began saying how he was missing his new university friends who feel so much “like family” as they’ve grown so close so quickly and he started talking of the theatres, book shops, nightclubs and coffee shops he was missing.
Although I am absolutely dreading him leaving this weekend, my heart feels full and glad. My gorgeous boy is becoming a man with his own independent life – something which I was told throughout his growing years would be impossible.
I never stopped believing he would achieve on all levels. And now he is.
There are still funding issues I’m having to chase up but we are there ! My boy – my man – love and roots always here at home with me and his siblings – but an independent future full of dreams, growth and possibilities.
Ollie’s progress – December 9, 2016
It is a beautiful but very busy time of year as we enter the festive season. In my schools and academies the rewards of working so hard all term come to fruition with award ceremonies, performances and celebrations. It is also just days away until I collect Ollie for the Christmas holidays and the end of his first term of independence! It’s amazing how his life has changed beyond all measure.
On that note I thought it was about time I gave you all an update on his progress. You may remember me sharing with you that after just a fortnight, Ollie told me he had “grown from a seed into a tree”. Since then his life has been vast, fulfilling and extraordinary – so different from the tiny, closed box he was forced to survive in at his previous school where up to aged 16 he was written off and closed in.
One thing I have learned however (poor Ollie – I seem to still be constantly learning as we go along this journey together) is that even at university I can never take my eye off the ball. It is much more from a distance now because my autistic boy has to be allowed to become a man, a man with life skills, life experience and independence. It was heartbreakingly hard at first but now we feel it’s been this way forever. Ollie secured his funding for a specialist mentor, as you know, but she didn’t appear for over half a term. Ollie, flying high on his newfound independence and confidence, didn’t chase this up and I remained in blissful ignorance. Because Ollie needs tasks broken down into simple points and prioritized, as well as help with assistive technology, he went off on tangents. Completed assignments were lost on computers, essays were beautiful but not kept on task and Ollie began to come adrift. Never ever having had spirits before, there was an evening where he drank wine glasses of whisky and got totally out of his depth! The care and quick thinking of his friends that night touched me enormously – they were incredible. He was also dreadfully homesick at times. There was an overwhelming amount to learn. Fabulous tight bonds with his flat mates were a huge mainstay and comfort. Ollie is tremendously loved and well thought of by everyone.
I knew he had got himself into a pickle because it all came to me in a terrifying dream. I couldn’t reach Ollie so contacted his older brother who filled me in . We all met, scooped Ollie up and brought him home for the weekend . I emailed the university about the funding . It emerged they had it but Ollie was expected to contact the outside agency who provided it ! No one had told him . This was done immediately and within days Ollie had a wonderful mentor who just ” gets” him and with whom he has a fantastic rapport . Work is now on target , manageable , he’s become a technological whizzkid . The work he produces leaves me open mouthed in respect and amazement . He’s back on track !
Some important life lessons also learned, (he now abhors whisky and is affectionately called “Famous Grouse” on his facebook flat group chat) he is absolutely blooming. He organises his banking, deals with student loans, books train tickets, catches trains including on journeys where he has to change trains in busy stations, reads timetables, cooks, organised his weekly food shopping, budgets his money and socialises. He meets authors and poets regularly – it’s the life he’s always dreamed of!
He has grown unrecognizably in every way. Yes, he misses us all desperately but I now send him his rail fare every 2-3 weeks and then collect him from the station to bring him home for weekends. It’s all about balance.
More so than ever before, Ollie is my huge oak tree and inspiration. I can’t wait to collect him from university next week and breathe him in for a whole five weeks. I could burst!
On that note, the Festive Season is all about family and with my two older boys home for Christmas I need to make the most of it. So my next blogs will resume in January. It’s been a super busy time this trimester with my work and my soul needs to rest within my family and the magic of where we live on Exmoor, England.
Happy Yuletide everyone and a joyful New Year.
Hugs to all!
The Instant Effects of Therapeutic Touch – November 24, 2016
The Second Brain – November 17, 2016
This is completely fascinating and yes, I tell all “my” kids about it too!
The gut, which is made up of the mouth, oesophagus, stomach, intestines, colon, pancreas, gallbladder and liver, is actually a main production line for producing and storing neurotransmitters, most of which are identical to those found in the central nervous system such as serotonin ad dopamine. There are more neurotransmitters found in the gut than in the entire spinal cord! There are over 100 million neutrons found at any time within the gut which acts as a separate nervous system so complex it has been dubbed the “second brain“ or enteric brain. It is actually the original nervous system! Much scientific research has been carried out on this, particularly in the last 30 years, with Michael D. Gershon being a leading expert in the field.
In massage the gut is accessed via meridians as well as by working directly over the areas. Why do I love it so much?? Where do I start?! Well, apart from housing our gut instinct and feelings, it is where we feel and store excitement, rage, worry, fear, anxiety, frustration and anger. It’s where we squash down and “bottle up” all the things we can’t digest – and I don’t mean food! Things like trauma, feelings or experiences we can’t express or process and things we are unable to face. The gut is a hugely important emotional centre and for many of our “special“ children, can act like a mega storage centre, particularly for those who cannot express or who feel they have no voice. When this area becomes blocked rage, meltdowns and frustration erupt.
Here are few techniques to help ease, release and unblock this emotional storage in a controlled and comfortable way. Get ready for the deep benefits – they are wonderful to watch!
This stimulates meridians running down to the gut along with the oesophagus. The buried voice is drawn up towards the mouth.
Place your fingers on one side of the spinal cord and your thumbs on the other. Always working from the base of the neck towards the hairline, gently but firmly lift and squeeze the skin upwards, never breaking contact. Repeat at least 6x.
With middle finger pressure gently but firmly rotate the skin on the pressure points all along just above the eyebrows. Work always from the inner eye outwards towards the temples. Repeat at least 3x. When you work around the eyes, you’re working directly on the stomach! Isn’t that amazing! I love my job!
The points either side of the top of the bridge of the nose, where you begin, is actually a concentration point. Always work out to the temples to get all those fabulous, gorgeous happy and pleasure hormones zooming around, reinforcing all that well being and feelings of the ability to cope.
Using middle finger pressure again, rotate the skin gently but firmly, working outwards towards the ears each time Just in front of the ears is a slightly hollow dip which upon pressure makes you go slightly deaf. Work out to this point because the vagus nerve crosses here which lowers heart rate and blood pressure. It is also a hunger point so great for regulating appetite for those with eating disorders or issues around food. Repeat at least 3x.
Incidentally working on the face is not only deliciously soporific, it gives a natural a natural facelift. Perhaps I should employ people to do me….
This sounds a bit like a form of medieval torture but is fabulously relaxing, I promise. It stimulates lymph flow which keeps the body healthy and boosts immunity but importantly it accesses vital meridians to the enteric nervous system as well as physically working around the mouth, the physical start of the gut. We do need to loosen up our “stiff upper lip“ culture and all those clenched jaws where we are “biting our tongues” on all we need to say.
Gently but firmly squeeze the skin around the jawbone between the thumbs and first two fingers. Repeat at least 3x always working from either side of the chin up towards the ears.
I hope this helps!
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
The Pleasure Hormone – November 9, 2016
How rewarding it is in my work to be able to fill my “special ones” with happiness – but also pleasure! And to visibly see this on their faces! It’s such a joy!
Where serotonin is the “happy hormone”, dopamine is the “pleasure hormone“. This one is even better than chocolate and love. It’s chocolate, love and prosecco! Produced in the hypothalamus, dopamine travels to and is stored in the pituitary glands. It is actually a neurotransmitter that controls the brain’s reward and pleasure centres. It increases feelings of motivation and focus towards rewards and has links to the executive brain functions such as attention, focus, productivity and forward planning. Low levels of dopamine lead to fatigue, mood swings, memory loss and a lack of attention and focus. It is no surprise that people with ADHD have significantly low levels of dopamine. Many of the synthetic drugs given to those with ADHD simulate dopamine.
Here are a few techniques to stimulate dopamine naturally and to get it flowing beautifully. I’ve seen these techniques help so many of “my” hundreds of children with their attention, focus, memory and productivity levels significantly increases after their sessions with me and this has also been recorded by their schools.
To stimulate the pituitary in massage, the temporal areas either side of the head are where you need to be. As I showed you last time, place the palms over each temple and gently but firmly rotate the palms, really moving the skin. Go forwards 3x, then backwards 3x. Repeat as necessary. This stimulates serotonin as well as dopamine. Result: one very happy, focused, relaxed but motivated child is flooded with the feeling of welling and the ability to cope and function.
The temporal areas of the head are shown here and as you can see its the area either side of the head on and around the temples. Its easy!
Apologies for the very technical terminology but I like the kids to have fun with this. It helps them understand and feel in control of how I work with them. I tell them all about happy and pleasure hormones too. They often say they wish I was their biology teacher! But you know what? They learn so much this way and feel part of their own treatment.
Cup your fingers an thumbs together like a C. Move and push them towards each other like inverted windscreen wipers, starting from the base of the head and working up either side of the head towards the crown, paying particular attention to the temporal lobes and temples. Then come back down the centre of the head towards the base again. Repeat at least 3x.
Using the first and middle fingertips, follow the exact same path as the windscreen wipers, really moving the skin as well as the hair. Repeat at least 3x.
If the child is epileptic, the more stimulating techniques to the head should be avoided. Instead spend longer doing this one: shampooing. Using the fingertips only (with your thumbs merely acting as ‘anchors’) gently but firmly rotate your fingertips, moving the skin as well as the hair, covering the whole head but paying extra attention to the temporal areas. Imagine you are massaging in all that gorgeous happiness and pleasure! It’s hugely beautiful and relaxing!
Did you know we have neurotransmitters inn the gut that act exactly lie dopamine and serotonin too? “My” kids find this amazing. You can work on the gut without actually physically touching it!! I can’t wait to tell you about this next time and why it’s so important.
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
The Happy Hormone! – November 2, 2016
Well as you’ve guessed by now I really love my work and seeing tight, taut, frustrated children and young people relax and open up emotionally and mentally. To watch boundaries, fears, anxieties and even inhibitions and phobias melt away like the tide going out; to see children embrace touch and the world around them is fulfilling and heartening beyond words. A relaxed and happy child is a confident and courageous child who is so much more receptive ;a child with a voice who will discover their song. A child who feels they can achieve and grow.
Just as our “special ones” are each totally unique behind their labels, in the same way as “regular“ kids are, so too are they growing physically just like “regular” kids. The onset of puberty and all the raging hormones along with the issues, challenges and learning about themselves, all happens on top of feeling different, misunderstood or unsupported. Can you imagine surviving a day in their shoes, particularly if it’s in a mainstream school?
Hormones control mood, growth, anger, aggression, metabolism, sexual reproduction, sleep patterns and stress levels – to name a few. They are key to keeping us balanced and happy. One of my top favorite hormones is serotonin, the ”happy hormone”. This one is particularly gorgeous because it floods us with an instant sense of deep wellbeing, happiness and the feelings of the ability to cope and function. It’s a bit like eating 10 bars of the most delicious chocolate (where it’s so lovely you can’t actually talk) without the guilt, calories or a single dimple on the thighs. It releases identical feelings to being in love. I can’t get or give enough of it.
Did you know that the simple act of praising or valuing a child instantly fills them with serotonin – and that’s before you even put your hands on?! And it’s free so won’t cost the school budget! So no excuses… praise our children!
Let me now share with you a couple of simple techniques to stimulate serotonin, before I burst through the word count as usual…
Technique One: Temple Rotations
Place a palm of each hand gently on the temple at each side of the head. Rotate the area gently but firmly ,really feeling the skin move , clockwise 3 times and then anti clockwise 3 times. Repeat several times.
Technique Two: Head Lifts
Place the palms of your hands over the temples, keeping your fingers straight. Lift the area gently but firmly lifting up the skin. Hold for several seconds and then gently release. Repeat at least 3 ties. A lovely way to flood the body with serotonin, feel the weight being lifted from you whilst feeling totally held and nurtured.
That should keep you going until next time when I’ll tell you about the pleasure hormone. If you thought happy was good… wait for pleasure! This one is really WONDERFUL!
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
The magic of my work and oxytocin! – October 26, 2016
Listening combined with careful nurturing touch is at the core of my work.
Last time I shared with you a little about myself and how I came to blend many years of working as a complementary therapist with tailoring and specializing my therapies around my autistic son. Little could I have known that journey would go on to take me up and down the UK, into Europe and further afield, teaching, training, talking and touching so many. It’s like a miracle! I never dreamed the blessings my son has brought me would reach so far in ways I could never have imagined!
Although my work has so many layers now with teaching and writing, I could never lose touch with the essential grass roots level of actually putting my hands on people. Sometimes my body gets so tired from doing 16 or 18 massages in one day with no break but when I think that I now work in children’s homes and with young offenders as well as all “my” many children with autism and other different abilities, I can never remain tired for long. Because it is awesomely beautiful to watch the children I work with begin to trust me, to release their fears and anxieties, to relax and open up like the gorgeous flowers they were always meant to be. There is no such thing as an ordinary human being. We all have a gift, talent or song – even for severely autistic people or profoundly disabled people there is something that will make them light up. I’ve never not found it.
Recently I have developed my work into schools and centres where children have profound and many layered disabilities where most are in wheelchairs, many are non-verbal and many are blind and also deaf. In an age where touch has become so suspicious and taboo, imagine the joy I feel when I am allowed to use my nurturing touch. For people isolated from a world they can never see or hear, touch is their only connection. Imagine making that connection!! I want to cry every time! I absolutely LOVE my work and adore going into these centres to train others.
It is where I am always also learning. When you share knowledge and experience you always learn in return. It can only work this way. Or how can you grow?
The key to my therapy is placing the child or adult in charge. Particularly for those with autism spectrum, being in control is important. I show them where I’d like to massage and how and always ask permission every time I meet them. I never massage two people the same way. If they are non-verbal, I can feel from their bodies or expression whether they like something. There are so many ways to communicate. I am always called by my first name, whatever anyone has to say about it, and the child builds trust with me because I listen. I listen with my heart, a slower listening, where I feel how the child feels and adapt my touch accordingly.
I combine listening with therapeutic, nurturing, gentle, supportive touch. It’s not rocket science! The child is in control of their treatment and knows I work only “with” them and never “on” them. I deeply care about each person.
I’ll tell you something else: Did you know that when you gently place your hands on someone, within 40 seconds the body releases oxytocin which is the antidote to the stress hormone cortisol? Children with autism have greater than average levels of cortisol so touch counteracts this immediately. This can be measured and quantified scientifically and neuropsychologically. In other words I can prove it works! It is the hormone of peace and wellbeing. Babies release it when they are breastfeeding. It is nurture and safety. And it only takes 40 seconds!
I’ll tell you about the happy and pleasure hormones next time. Yes, we have those too! We human beings are actually AMAZING!
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
A Little About Giuliana: A Woman On A Mission! – October 19, 2016
Following the hugely unexpected response to the simple LinkedIn post about my autistic son Ollie gaining a place at his first choice university, I’ve happily spent some time sharing his journey and ways I supported him throughout his growing years, including sharing learning curves and tips. Our children with different abilities are incredible, strong, UNIQUE and often very gifted. My message throughout all my work is really all about what these kids CAN do because there’s no such thing as an ordinary human being – we all have something special and unique to us, to offer.
I am super blessed to have an autistic son and also work with people with autism and other differences from babies up to pensioners, from all walks of life and all with a song to sing. And believe me I get them singing! I often join in! And it’s all thanks to my path with Ollie. Sometimes he teases me, giggling, as I dash out the door to another training or public speaking event, saying “Don’t forget it’s because of me you do all this!”. He’s joking – but it’s actually true. He changed my life. A million times for the better.
As you all know by now, Ollie hit a terrifying bad patch at 13 when he was left totally unsupported and written off, his dreams shattered by an intransigent head of department. I began refining and specialising my massage therapy as the traditional way I’d been trained was far too aggressive and invasive for my son. What you don’t know is that as a family we had hit an all time low in a different way. I had broken my foot in three places and had been left with £50 in my wallet to last me nearly three weeks. I was on my knees on so many levels.
In a month, after I began massaging Ollie, to instant and amazing effect, I made a decision to never be reduced to such desperate levels again. The next day I threw my crutches into the dust-cart, to rapturous cheers from the garbage men, (all true!), crawled back into the house and called my good friend to ask her to bring me a pair of her shoes two sizes bigger than mine, some spray tan to cover my bruises and a heap of pills to blot out the pain.
Every day for six weeks she drove me into town where I massaged every head on every SEN register in every school and specialist academy in my area. For free – to prove it worked. I couldn’t afford to but I had a goal, a mission. I knew this worked!
It paid off. Within six weeks I was being paid, within six months I was more than full time with long waiting lists, within a year I had written for Autism Eye and trained my first charity (MIND) and within three years I had a book published. I now write and speak nationally and internationally, schools pay me to train their staff and I saved right down to £5 or £2.50 a week for two and a half years to convert a large tea room into my first therapy/training chalet. The first of many I hope. I’m a woman on a mission! (Visit Giuliana’s TherapiesForSpecialNeeds Website)
I haven’t shared this to show off by the way. I’m way prouder of Ollie and all “my” kids than I could ever be about myself. I’m telling you all this because you must never, ever, ever give up on your children. I’ve used our life to help others. And next time I’d love to begin showing you some of my techniques and explaining the amazing science and neurology which helps it work. I want to share with you how combining listening with therapeutic touch literally changes a person and therefore their life.
Can’t wait to see you next time!
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
The Work place and a Dream of mine – October 13, 2016
Just as true awareness and understanding of autism needs to be present throughout the education system as well as in the wider community, from early years to adulthood, so it needs to be within the workplace. As I said last time, 99% of those with autism want to work – to flourish, to grow, to use their gifts, sing their songs, to give back and participate fully in society. Autistic children become autistic adults who want to be included, supported and understood. They want to belong and to contribute and there is no reason why they can’t. These diagnosed children make up a very large percentage worldwide of the future – they can’t be ignored or discarded anymore.
Just as schools are being pressured to become more inclusive, employers also need to seriously raise their game and understand the many gifts and strengths that those with autism spectrum can bring to the workplace. Education and enlightenment needs to replace fear and ignorance.
Just as anyone would when applying for a job, look at the positives and strengths, the talents and passions. My Ollie is a wordsmith, a communicator, has total focus and drive, commitment and hunger – huge attributes to any employer. He never gives up and expects to constantly think outside the box because his life has never been A to B. Ollie, like many on the spectrum, is methodical and precise, thriving within a routine but with a 3D vision that can think laterally when needed. Wherever Ollie has worked in the holidays, he has always educated his work mates and employers.
There are scores of “regular” people who find certain things difficult or stressful. We all have challenges we struggle with or situations we find more challenging than others. There is no need to be fearful just because someone has the label autistic. They are unique individuals who also have many strengths and positives also.
When you show someone with autism spectrum “disorder” understanding, support and encouragement, when you believe in them, you will never regret employing that individual. I know because I’ve witnessed it time and again. The workplace becomes fairer and more inclusive and thrives. It is well documented that when an employer gives someone with autism spectrum work, they are loyal and dedicated, thankful of the opportunity and determined to give their best.
I have a goal of my own. I won’t call it a dream because it will become a reality and I’m working hard to achieve it. I have a therapy/training centre which I’ll tell you more about next time, but I plan to open more centres up gradually all over the UK and one day further afield. People will come to enjoy sessions or workshops with those I have trained. Some will come to learn and train for themselves as they already do in the therapy centre I have on Exmoor. I have already begun training up some of my ex students from my lists at schools who are on the autistic spectrum or have other different abilities and they are fantastic at it because not only are they my trusted and skilled apprentices but they have true understanding and compassion of having walked this difficult path “from the inside out”, as I call it, just as Ollie and I have.
These young adults have gone from being desperate and receiving my treatments to thriving and being trained up. I’ve put my money where my mouth is and begun to show the world that you can train and employ these amazing young people. But it’s only the very start!
My goal is to attach cafes to these future centres where I will then employ those I have worked with in the more specialist academies like Foxes Academy in Minehead, Somerset, where learners with autism, Adhd, LD’s and Down’s syndrome leave with recognized qualifications in housekeeping, hospitality and catering. These young people would be a dream to employ in the cafes because they are diligent, honest, dedicated and above all capable. They would be allowed to use their qualifications and be paid the right money to do it. It tears me apart to watch these young adults graduate with flying colours and many never find paid employment.
If I ever become a best selling author I’ll invest every spare penny into setting up my own publishing company and getting the incredibly gifted and talented kids I meet with autism published.
We all need to grow. We all need a voice. We all need to be believed in because each of us has something unique to offer. I will always invest into these amazing people and walk my talk.
Watch this space – I’m determined it will all happen!
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
We too want to work – October 7, 2016
So far my blogs have been mainly about raising the bar from autism awareness to autism understanding and support – looking at life for those with autism and their families, and really walking a few miles in their shoes. Based on the journey I have had with my son, Ollie, I have used my experiences (and lessons learned!) to give advice and hopefully inspiration about the path from early years to leaving, school. I would like to think that Ollie and I have exploded a few myths and shed some enlightenment onto the darkness of fear and ignorance that still surrounds autism.
In the UK, as in other countries, we dedicate the month of May to Autism Awareness. However, as I wrote last time, the sad fact is that 50% of people with autism over here do not go out because the wider community do not understand their condition. (National Autistic Society). Less than a quarter access higher education due to the lack of true understanding, support and funding coupled with limiting, negative beliefs and the lack of expectation surrounding these precious, formative years. This is why I fight as hard as I do and work exhaustive hours: because these kids and young people are worth believing in. This is no longer just about my own son.
Sadder still is the fact that only 15% of young adults are in full time employment (Ambitious about Autism) and only 6% in paid employment with some figures being as low as 4.5% in some areas.
Yet a staggering 99% would love nothing more than to work!!
I have seen young, very able adults graduate from the specialist academies I work in with national qualifications, bursting with pride and excitement, a bright and promising future ahead… yet two years later they are still desperately seeking an employer to give them a chance. With isolation and exclusion still surrounding them, it can be difficult at times to get their voices back and be heard.
Yet they have so much to offer!! A recent report in The Economist supports this view. There are skills and traits people with autism have that are massively beneficial in the workplace – more on that in my next blog…
But for now let’s look at some hard figures and reality as it stands.
Nine billion pounds alone per year would be saved in just the UK if those with autism were supported to gain the employment they so desperately seek! Imagine if this figure was injected into the slashed budgets and funding surrounding autism and special needs in schools?! With potentials maximised and gifts nurtured, imagine what the future would look like for these amazing children!
Just look at all my Ollie achieved fighting through all the odds. I’m not trying to be clever or boastful but I refused to accept what professionals such as teachers and doctors told me because I knew all that Ollie was capable of…he was never a label without a voice to me, he was an acorn wanting to grow into an oak tree. I never lost sight of that and never once stopped believing in him. Not once.
Lots of parents blindly accept what they are told about their child by professionals who sometimes have not even had basic training about autism in schools, and this reinforces the walls of negative limitations surrounding that child – that unique human being. My Ollie is living proof that these young people are worth investing in. Children with autism have an equal right to an education and a voice, the same as “regular” children.
The huge tenacity and endurance it takes just to achieve and bloom when you have different abilities are strengths that will come into play over and over throughout a lifetime. It teaches you stamina and courage. Children with autism learn from early on that the path is seldom A to B – again, a skill that will serve them well in life and the workplace where a closed door just means finding another way and thinking around a situation.
Many kids with autism become adults who are perfectionists, completing to the best of their ability every task set for them and leaving no stone unturned in their quest for knowledge when passionate or motivated about a goal or idea. They are also great with routine and once shown a task have photographic memories and can work perfectly well independently, with real focus and no diversions until the job is done. Many are highly creative or absolute whizzes with technology. The list is endless…
Just as it is with anyone, it’s about finding those strengths and talents and channelling them into the right workplace. With an average worldwide figure of 1 in 100 children being on the autistic spectrum, that is a lot of future autistic adults who have a voice and something to contribute. A lot of people to write off.
It is time for employers to shake things up a little and next time I will share with you a goal of mine where I will put my money where my mouth is and employ those with differences to show the world how fantastic these young adults are!
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
From a seed to a tree – October 6, 2016
Freshers week is over and has been survived! Following the continued flooding of my Linkedin and business inboxes from those of you so kindly asking after my son, I thought I’d share a small update on his progress!
Ollie and I hugely value all your support and interest: it touches us both tremendously and we are moved and humbled by such unexpected good wishes. Ollie has gone from so few people believing in him to suddenly leaping into his new life away from home for the first time and people investing into his studies and all of this support worldwide! We keep pinching ourselves. I assure you he really does feel you all behind him, as do I. So a massive thank you from us both.
Ollie has not just survived his first fortnight away, he has completely grown and blossomed beyond all I hoped possible. I was so worried about the social aspect to his new university life – a major reason why so many with autism struggle and drop out. However I couldn’t have underestimated anything more! As a family we now have to literally book him in for calls and he has missed three quarters of those because he had arranged to play badminton, or had a party or had just met a new friend. The flow of photos from both him – but also through that marvelous invention of the Facebook newsfeed, which has been most interesting – has had my eyebrows up near the ceiling on some occasions and the other children and I howling with laughter. My heart could burst with happiness for all that Ollie is embracing.
I’ve also had photos of changed and ironed bed linen (!!) and gorgeous homemade pasta dishes just as I taught him but with his own Ollie twist. He’s being spontaneous and creative as his confidence has grown!
He has met so many new friends. Some are from his course with that shared love of literature, poetry and writing, some at parties and one or two with Aspergers who seems just lovely. He has so much in common with them , not because of their labels but because of the people they each are – yet with that linked understanding and empathy between them due to their conditions.
Ollie has even been into town applying for weekend work in bookstores to help me fund him through his studies.
I nearly cried – again!! Student support helped him write his first of formal CV.
“You can’t do it all Mum and anyway I’ll be among all those classic books – just imagine!”
I can imagine. I am so proud of him!
His most recent text message, received today, sums it all up:
“Mum, I’ve gone from a seed to a tree in the space of a week”.
Yes, he has. He is my great big oak tree reaching for the sun and for the first time seeing a view that stretches for miles and miles.
My amazing boy.
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
Ollie’s update and university life – September 29, 2016
Following an unprecedented amount of emails and messages, I have actually postponed my next two blogs which are all about autism, different abilities and employability which I am just itching to explore, and have “gone with the flow” to give everyone a little update about how my son Ollie is getting on after moving last week to his first choice university.
He is not just surviving it… He is thriving!!!
After reporting back that he didn’t sleep a wink on the first night ever away from home because he felt so sad and homesick (he had never even had a sleepover at a friend’s until last Wednesday) and 24 hours of texts asking every little thing from how to work the laundry to how to know whether to defrost sausages before cooking them (I nearly had a heart attack) and how to buy a bus pass online, it was as if someone had waved a magic wand and the world was full of sunshine. He just “clicked”.
Ollie reported that the next night’s sleep was “very comfortable” and that we could FaceTime him again when he was “available” which was not until the next day. Ollie had discovered student life: parties, trips, tours and friends!!!!
All week peer mentors have shown him, amongst others, the ropes of how university life works and independent living for the first time. He has discovered underground nightclubs, the best bars, the theatre and the best student shops. Ollie has also cooked – admittedly some strange concoctions – but he’s cooked with friends and seems to be never alone!!
We made a huge picnic last Saturday of all Ollie’s favorite food and trundled off early to make the drive to see him on his first weekend of his new life. Fully expecting to park up and go and find him in his new room reading a classic, as he so loves to do, inside my joy and surprise as we drove onto the university campus, past the lecture theaters and refectory and there crossing the raid in front of us – in a MASSIVE group of people, was our Ollie!!!!! I instantly erupted into huge excitement, buzzing the window down and making a love heart against the windscreen with my fingers. For the first time in his life – truly to my absolute joy – Ollie looked embarrassed and after a quick grin of delight, sped up.
As I parked the car, Ollie started rushing towards us. I opened my door in readiness, my mother’s heart filling with happiness at how pleased Ollie was to see us and how he was running up. I prepared myself for the hug… Ollie panted up to the car and the first words that left his lips were “please don’t embarrass me Mum. Try to cuddle me gently.”
Even though I wanted to absolutely squash him with the relief and euphoria of knowing this meant he had friends and a new life, I was remarkably well behaved. I met several of his new friends and was blown away with the ease with which they already seemed to know each other and how relaxed and confident this new Ollie was. My biggest fear that he wouldn’t make friends and possibly find it hard to cope, were already being swept away. One particular friend called Dec seemed especially lovely and like Ollie had different abilities.
It didn’t stop there. As we had our picnic in the beautiful secluded university grounds, Ollie couldn’t stop talking. My boy was full of life! He told us of his first parties, one by a beautiful lake where students brought speakers and picnic rugs. He spoke of dressing up for freshers events – another first! He was relaxed and happy and so proud of how he was living independently.
When we returned to his room later for a cup of tea, three very beautiful girls knocked all within 15 minutes of each other on flimsy pretexts but mostly to know what Ollie was up to that night. His flat mates are all so lovely and I promised to bring along some prosecco and brownies next time so they could join us.
So huge in confidence has he grown already, that he even spoke of a rather quiet girl who had moved into his halls further along the block. He was trying to coax her out and showed immense empathy.
“Mum,” he said, “she might have autism so I can’t give up on her. Some people have given up and I know what that feels like so I’m going to get her out.” Who said people with autism don’t have empathy? Probably the same people who said autistic people can’t achieve.
I often have it said to me that Ollie “doesn’t look autistic”. I always take a deep breath, count to ten, smile and think of that saying “well you don’t look ignorant, but here we are…”
Just as people with the common cold don’t all look the same, nor are those with labels. We are all individuals with gifts and qualities to share. We all have a future and a right to an equal chance to one.
With parties and events lined up and Ollie finding his feet as well as his wings, he is more than ever living proof that he is so much more than a label. He will no doubt have pitfalls and steep learning curves but he is thriving because he is surrounded by people who believe in him now. And that makes the world of difference.
In my eyes Ollie is an ambassador for all that can be achieved whatever your label and however much your voice has been stifled, your spirit crushed at times and your world boxed in by preconceptions and ignorance. He has educated people in the kindest, most enlightened way.
I hope he sets the world on fire.
I believe he will.
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
Roots and Wings. Part2. – September 26, 2016
” Your children are not your children….
though they are with you, yet they belong not to you …”
So wrote Kahlil Gibran and they are very true words. As our children grow, we hopefully provide the right environment in which they can grow and flourish along with the deep and wonderful roots of belief, support and encouragement. This is needed more so when you are blessed with a child with different abilities.
We do all this so that they can grow wings and on Wednesday it was time for my son Ollie to use his for the first time. All his life has been building up to this moment, a moment he has had to fight for that much harder than “regular” kids, fighting through stigma, negative limitations and a total lack of expectation from those making decisions about his education and future. Everything has been a fight but a fight worth every moment. I shudder when I think of the countless times Ollie could have been written off if I hadn’t fought so hard.
As I drove away in my car on Wednesday evening, I thought my heart would break from the loss, the crater left by Ollie no longer being there and most of all from the terror and worry of how vulnerable he is and the thought that only life itself could now teach him life experiences. My whole being wanted to continue protecting him but I know that to continue wrapping him up would stunt his growth at this point and clip those beautiful wings he fought so hard to grow. I felt torn in half!
I got home to a flurry of text messages from Ollie ranging from where did I put the bathroom cleaners and how often should he clean his bathroom and wash the bedding, to how do I know what to cook first and later that evening to how he had managed to start and maintain conversations and actually make a few instant friends who were feeling just as terrified as Ollie. He was in at the deep end… but was cautiously swimming! We used FaceTime for the first time ever and laughed because Ollie was in the middle of shaving in his new bathroom and looked like a bewildered tall Father Christmas. It helped all of us to see each other’s faces and hear our voices. Especially Ollie who was all alone.
So far, so good. I still woke up at 3.30 am pole axed by such grief and worry that nothing would settle my mind. How my heart hurt – I thought it would never stop.
Throughout the whole day as I worked in the schools and academies, even my footsteps felt heavy with the sense of loss and pain. So much had been a fight to get Ollie to university that there had been no time to feel and now all the feelings had caught up with me and the hole he had left felt like a cavern of pain.
Then suddenly the sun felt like it had burst out from behind the clouds… Late that afternoon there was a change to the text messages. Ollie reported that had had a “humorous bus tour with new friends” around his new university town. Excitedly I asked if we could face time him again. I received a very articulate, polite, typical Ollie reply which made me roar with laughter: “I’m afraid I’m very busy having an evening in the student union doing a pop quiz. However I could make myself available for a chat in the morning”. Ha! Instant mending to my mother’s heart. He was busy socializing! My biggest fear already being soothed away. He didn’t need that call. My own loss of him was instantly filled with such happy thoughts of my sunny natured, amazing boy forging friendships and being too busy for his mum!
I realized in that instant that this is what wings are all about.
And I was so, SO glad.
It’s what we sign up for as parents, isn’t it, to see our children grow, bloom and fly, never forgetting their roots but reaching skies we can only dream of. For someone whose child has autism, cracking it socially is a wonderful piece of that sky!
So few kids with autism make it to university and the drop out rate is high – and almost always because socially it is overwhelming and difficult to cope.
Day one and my son was already too busy socializing – I loved it!!
What a wonderful job the widening and participation staff do, bringing these young, gifted adults together earlier than the rest of the students to break those barriers and ease them in. Ollie had never even had a sleep over at a friend’s before Wednesday and now here he was, booking me in a time when he would be “available” to speak. I’m chuckling right now as I write this!
The second news to lift my spirits high was that Ollie’s old college wrote to me to advise me he had been given awards in recognition of his work. Ollie had already left for university of course but I rang in to say I would be honored to be there in person to collect it on his behalf .
The ceremony was on Thursday evening. My smile was so huge that it must have looked like one half of my face was hovering over the other half. I felt vindicated for all he had gone through and happy that at least his grades had been recognized, if not his remarkable journey.
He worked so hard and achieved against all the odds imaginable. He continued through losing his funding and becoming seriously ill. He persevered when he was terrified, ground down and demoralized. So many others would have lay down and given up but my Ollie carried on quietly and with determination. It staggers me to this day.
Ollie was awarded for his academic achievements last night at a very special ceremony. But for me it was about so, so much more than that. It was about his immense tenacity and strength, his perseverance and above all proving beyond all doubt that kids with autism can and do achieve.
I would like to think that Ollie has changed the way his previous college thinks about those with autism now. But even if that isn’t the case, Ollie has touched so many people world wide, given them hope, let them know to never let others define them and to reach for the stars because anything is possible.
Now he is surrounded by people who believe in him. He has moved on to a world where people are investing in him without question or fight, who have seen how beautiful his new wings are and are right behind him helping him reach higher and higher than he could ever have imagined a mere four years ago when that head of year told him he would “never achieve”.
No mother could remain sad or empty seeing the world open up before their child.
Those stars are all yours Ollie. You deserve every single one.
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
Ollie’s departure. Part 1. – September 23, 2016
The four corners of my world and everything in between altered forever on Wednesday. My eldest son left home just days ago to pursue a fine art degree and was followed hot on the heels by our Ollie this week. The corners of my world became elastic and stretched.
The last few weeks have been intense since Ollie achieved beyond his expected grades, confirmed his university place and showed the world what kids with autism can achieve as the LinkedIn post I wrote touched almost 40,000 likes and comments.
He has learned to cook, get a job, budget money and I’ve even asked him along to trainings and talks for my work to get him used to conversing with strangers and getting over those social hurdles. He has excelled at all of these things and has grown terrifically in confidence and courage, surprising both of us.
Then suddenly it was Wednesday 21 September and there we were, just Ollie and I, the cases packed, the last belongings loaded into the heaving car. I took some last, proud, emotional photos of my boy, now a man – a gifted, brave autistic man with a brilliant future – on our doorstep for the last time.
The minutes seemed to hang suspended for an eternity, my heart burgeoning with pride and excitement at having finally reached this long dreamed- for moment, but also feeling heavy with the loss and weight of Ollie’s parting and my churning fears and worries that he will survive and thrive in this next phase.
The journey up was full of excited chatter , dreaming , planning and as usual lots of laughter. As we pulled into the long drive leading to the university campus however, the silence of realisation and reality descended.
The endless queues for student ID cards, registering and obtaining room keys along with not having a clue where to go and a month’s worth of food that could actually feed a whole army defrosting at a rate of knots in the car, sent Ollie into total overwhelm, his eyes wide with fear with panic.
“I don’t know what I’m doing Mum”.
Nor did I – but I had to pretend I did.
Finally we had the keys, which Ollie lost twice on the way to his new room! How relieved we were to be told that well over 100 students had arrived early like Ollie, all with autism spectrum or other different abilities. Peer mentors were all on standby in cheerful blue t-shirts to show us where everything was and even help unload the car and manhandle boxes up to rooms. Ollie’s room was a gorgeous surprise – at the very top of a brand new building backing onto the quiet university gardens, carefully selected by the widening participation team based on Ollie’s needs. Within two hours we had everything unpacked, the room beautifully decorated, beers at the ready to share with new friends along with a huge cherry cake we had made together the night before. The kitchen cupboards were bursting. I didn’t want Ollie worrying about buying shopping for the first two weeks – he needs to concentrate on making friends and getting his bearings.
I then took Ollie to meet the head of widening participation whom we had met some weeks ago, with a list of everything that was overwhelming him. She patiently and kindly answered his questions and reassured him. His shoulders came down, his face relaxed, he smiled…
He was given a timetable of welcome meetings, campus and library tours, workshops, events and parties. He was given a time to meet his peer mentor and also someone called a house mentor who will show Ollie how to use the kitchen equipment, the laundry facilities and help him apply for bus passes and gym memberships. The house mentor is also available for out of hours incase keys are lost or there is a problem. Reassurance for both of us!
Then all at once it was time to say goodbye. Ollie had a welcome party with pizza and games as an ice breaker in the student union: my cue to go.
“Promise me you won’t cry Mum”, Ollie pleaded, his own eyes swimming, “and promise me you won’t look back”.
He folded himself in half to accommodate my diminutive height and wrapped me up in his big, solid arms. My own arms, feeling tiny, crept up behind his back and I pressed his imprint into me so I could carry it all the way home. I had to squeeze my eyes tight shut.
Then abruptly Ollie let go, “Bye Mum” and he walked away.
Dreamlike I put one foot in front of the other as if I was walking in slow motion towards the car. I didn’t look back. I felt my body, contort and crumple as if my heart was being wrenched from me.
“Look after my boy,” I pleaded silently to the sky,“please make sure he’s alright, keep him safe”.
I had brought him to this threshold, we had both walked it. Now I have to watch him walk the rest alone. With Ollie now nowhere in sight, I broke my heart crying.
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
Tight Like Boxes – September 15, 2016
“So many people are shut up tight like boxes, yet they would open up quite wonderfully if you were interested in them”.
In recent years the world has seen what can only be described as an explosion in autism. In the UK figures stand at 1 in 100 although I’ve read it’s as high as 1in 77 and even 1in 58 in some areas. It’s 1in 100 worldwide! With referrals often being so hard to obtain or very expensive, I’m convinced this figure in reality is much higher.
In the UK 50% of autistic people do not go out because the wider community does not understand their condition. (national autistic society). More than 2.7 million families are effected. 70% of children on the autistic spectrum attend mainstream schools in the UK yet there is no mandatory training for autism for teachers and some have no SEN training at all. They may be aware of labels but there is little education about those labels or how to support them.
Fortunately so many are fighting to have this changed and to give these children a voice and a future by raising awareness and educating those at government level. With budgets being endlessly cut however, it can be difficult to give struggling families hope.
I know for my part, being given the enormous blessing of my son Ollie, I will never ever stop fighting for these incredible, capable, willing, talented, strong kids and for education decision makers, employers and society at large to become educated, enlightened, supportive and inclusive. Children with autism become adults with autism and they have SO much to offer. The whole of society, our worldwide community, needs to rethink the way they see autism and I will never stop working to this end.
My own son is proof of how much can be achieved WITH autism, not in spite of it, as are so many of the massively inspirational and incredible children I work with. Yes, the fight for our children with autism never stops but the rewards are overwhelmingly wonderful. Those with invisible “disabilities” like high functioning autism are the strongest human beings I have ever met.
I had to dig around to find out about the widening participation at the university, but the effort and rewards have been fantastic. Thanks to the bursaries award, following assessment meetings, Ollie can now apply for housing benefits for his university accommodation. For the first time people are investing in my son and all his potential and growth and his future! With will, perseverance and patience, you can access this for your own children.
Someone very dear to me in Australia recently told me that the Australian government has now begun to recognize the different abilities these children have, and as a result have made a decision to invest millions into them. This has made my month! I’m hoping with all my heart that this will now help influence and inspire other countries and haul them out of the dark ages and into an Age of Enlightenment.
These children are the future too – a very important part of it. It’s time to help them sing their songs, to believe in them and provide the right environment in which they can flourish.
It is a huge mountain to climb, but we mustn’t stop because when we get to the top the view will be astonishingly beautiful.
Next week – Ollie’s move to university and new beginnings!!
Sending love, light and blessings to you all from my little corner of England ✨🌟✨
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
Emotional times as Ollie prepares to leave – September 7th, 2016
For the whole of Ollie’s school life, the driving force has been the constant fight for him to achieve his dream of writing at university. Knowing how intelligent and gifted my son is but trying to convince a mainstream college that special needs doesn’t equal “stupid” or sub normal has been a consuming battle as I’ve fought to constantly tweak and perfect the environment surrounding Ollie so that he could grow and achieve. It has been an enormous mountain to climb.
In the blink of an eye, my small son is suddenly standing on the brink of his 19th birthday and manhood, at the summit of that mountain, his dreams a reality in his hands.
The summer has been full of preparations, visiting accommodation and attending assessment meetings to unlock funding and ensure the transition is smooth with individualised support in place well before the start date. Ollie and I have often locked eyes during this time and I’ve seen the same excitement and fear that I feel, reflected back in those moments. I am terrified inside to leave him to face the world but I know he is capable of so much more than even I, his biggest believer, thinks.
At one long DSA assessment (disability students allowance), which, quite wrongly, cost £720 for an hour, to be deducted from Ollie’s, funding should I be unable to meet the cost, was actually worth every penny. The assessor also called Ollie, had great compassion and understanding. The meeting was all about my son’s strengths and the positive strategies to be put in place for his teaching methods and assignments. No one said the word “disabled”: it was all about ability, belief, support and helping a gifted person to flourish. I nearly hugged the man!
How Ollie will be taught, supported and cared for were all finalised to the last detail. This meeting has set Ollie up with all he needs permanently right up to the Masters he intends doing later on. My son – a Master!!!!
What keeps me awake in the long lonely hours, my mother’s heart racing, are the social and independence factors which no one can help him with. “How will I know which days to cook and which days to eat pizza with friends, Mum?” was one question. I told him to just focus on making friends and spend a term eating pizzas if necessary and focus on cooking and eating well with others as the term goes on. So few autistic people make it to university and the dropout rate is high because the social side is so hard. My son won’t be that statistic. Whilst the ability to cook brings independence and friends always around your table, making those social inroads must come first for now. Having said that, we’ve had some great cooking days as I’ve taught my boy!
This will be the greatest challenge to Ollie now. Academically he is soaring like the big eagle I always knew he was. Now he needs to organise himself, emerge socially and begin to live independently. Over the summer he got himself a job and opened a bank account, all as a big surprise to show me he can. I cried – again! I don’t seem to be able to stop these days…
So in exactly two weeks’ time, the car heaving with the weight of boxes, clothes, bedding, poetry books, artwork and record players, I will drive my son to his new life.
I worry so much that his beautiful, open, trusting nature could be easily manipulated or exploited – but I have to believe and trust in all I have taught and shown him.
He is no longer an autistic boy. He is a man with autism spectrum emerging into the wide world.
And I believe wholeheartedly he can do it.
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
“They said he wouldn’t but he did. They said he couldn’t but he can. They said he won’t but he will” – August 4, 2016
My journey with my autistic son, Ollie, is something I would never change – not for all the tea in China or millions in the bank. Yes, at times it has been utterly heartbreaking, maddeningly frustrating and we’ve both had to learn SAS levels of fighting and tenacity along with excavation skills of finding out information and other routes and inroads that any archaeologist or pot-holer would be proud of. It’s been devastating, painful, and infuriating as we have encountered ignorance, fear, limitations, negativity, invisible lines, and glass ceilings. However, this journey has also brought unimaginable highs, the craziest joys, the deepest strengths, and an unbreakable bond as well as the biggest victories and sense of achievement when Ollie has busted myths and attained the “impossible.” He has become my hero and my giant.
I remember him at his lowest point when I was sending his poetry off to authors and laminating their beautiful replies of encouragement for him to keep in his school bag so he would never stop believing in his song, his gift. I wouldn’t let anyone take his voice away or destroy his dreams. Without dreams, without a voice, we just exist and we don’t live. My Ollie had a life to live and one way or another we would get there. I took a photo of him totally wild and free up on Exmoor, Somerset, where we live and I framed it up in his bedroom when he became really ill as a daily reminder of how beautiful and perfect he is so that he would find his voice again.
Just two weeks ago following his widening participation meeting at university, he received his formal invitation to start the term four days early to get settled and attend workshops about budgeting, clubs, finding the shortcuts into town, and mapping where his lectures will be, along with meeting his mentor and a peer mentor, the latter being a 3rd year student from his degree course who has Aspergers or has been trained in it. How far we have come!
In the next month I shall breathe in every delicious moment with my boy – my young man – as we prepare for the greatest adventure of his life so far. He has grown in confidence and a quiet assurance. He has bloomed. He has proven all the critics and doubters wrong and changed the way so many in his previous college now view autism.
I shall miss Ollie’s constant companionship, the crazy, hilarious, invented languages we speak together, our passionate discussions about writers, books, artists, life… I’ll miss the way he puts his hand on my upper back as I wash up or write emails and somehow knows exactly how I’m feeling without the need for words. I’ll miss the way he laughs or cries at events in our days. He is my right-hand man and my teacher as well as my child. He will be flying the nest with the most beautiful, strong, colorful wings and I will live for weekend visits and holidays to see how far my son has come and to bask in all the great things I know he will achieve.
He is no longer my little boy. He is my 6 ft 3 inch brave, inspirational man and my heart could literally explode with pride. With offers already on the table for writing careers and internships with publishing houses, I know he will live an extraordinary life because he is an extraordinary young man.
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
We can all achieve and actually I agree that God created Autism to help offset the excessive number of boring people on Earth – July 19, 2016
Giuliana’s journey – author, therapist, public speaker and mother to a beautiful autistic son
Since my little rant a few blogs ago about how wrong it is for education and local authorities to refuse to invest in the support of those with autism and differences in specialist academies, whilst not batting an eyelid in offering it without question to “regular” or mainstream children. I have spent time taking about accessing a future post-18 – a basic human right. Until now I’ve focused largely on the “high functioning” end of the spectrum.
But what about life for those young adults who are moderately to severely autistic? With the best will in the world most will not access university, although I have heard about and personally known exceptions to that rule. I believe anything is possible. Any gift or talent, when nurtured and encouraged, can be grown and developed, even if it doesn’t take the university path. I’ve known a beautiful non verbal autistic young lady express herself through dance and move her body as though it were liquid. Another young autistic man communicated by playing the piano with such beauty he would move people very deeply – yet couldn’t read a word of music. Another would spend so much time jumping, I introduced him to a trampolining club and now he jumps in national competitions !!
There are so many different ways to learn, grow, achieve and be fulfilled. No one deserves to simply exist the same way every year for seventy years and call it a life. Everyone deserves to LIVE!
Take time to look around, ask questions and research. So little is invested in those with autism post 18 and in the UK further specialist education is often not talked about or made common knowledge.
One of the places I take my therapy work is a specialist college called Foxes Academy in West Somerset. It’s a residential college that takes 16-25 year olds with autism and Down’s syndrome. These kids, with all their differences and disabilities, gain work experience, vital life skills and very good qualifications in catering, hospitality, housekeeping, life skills maths, English and IT. Many would have written these young people off. There are many NATSPEC and specialist colleges like this yet no one seems to be really aware save funding is made horrendously difficult with many parents fighting lawsuits and tribunals to secure funding for places. A fight for the future of their able but different child. A fight no “regular” parents ever have to face or could imagine.
It is up to us as parents and professionals living and working with autism to keep passionately believing in and striving for ALL these children and young adults, to show the world they can and do achieve, to continue raising deep and true awareness – and to invest in every way to making the future happen for them.
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
The future is golden if we believe – July 20, 2016
While we are on the subject of young people with autism accessing bright, successful and exciting futures, I’d like to encourage you all a little more. I get so passionate and excitable about this (can you guess?!), I couldn’t fit it all into the last blog!
With belief, support and a little fighting at times, your child can absolutely achieve and thrive in life as they become adults. Constant communication throughout their education with those who teach and care for them are paramount. From nursery to graduation. Never take your eye off the ball.
Post-18, these often incredible young people get put on the “forgotten” pile of society. Funding often stops for education or is a fresh battle because no one expects them to achieve. They are seen as invalids. What a truly awful word: they have autism but they are certainly not “invalid” or worthless. They have tremendous gifts, energies and abilities to bring to the world and the future workplace.
So let’s get them started. Let’s believe and support! There are art colleges, horticultural colleges, vocational colleges, specialist colleges, apprenticeship schemes, where our children can access further education and achieve. I work in some of these and see it with my own eyes! I know this is achievable and possible!
I attend graduation ceremonies each July and take bath sheets along because tissues are never sufficient. It is hugely humbling , moving and inspirational to watch my students graduate with hospitality, catering, maths, English and IT qualifications which are recognised by employers in the workplace.
University is perfectly achievable too. Again, help for those on the autistic spectrum is not made common knowledge or readily accessible. I had to get my well worn, battered maternal spade out yet again and start digging deep for answers and support.
Many parents, myself included, worry dreadfully that even if their child makes it to university , how will they cope? High functioning autistic young people are so highly vulnerable because their “disability” is largely invisible. A very high percentage of autistic students drop out because social skills are so hard or they are overwhelmed. They never knew how to access help. I learned from seeing this among my own students so before my Ollie was even offered his university place I had started researching .
I accessed student support and within three weeks had arranged a “widening participation” meeting with Ollie and the student support officer at the university. This meeting accessed substantial student bursaries to support my son throughout the three years. He has an instant place to live on campus for the duration of his degree if he chooses, eliminating the stressful scrum for places. He will go up three days before all the other students arrive for term, to unpack, learn the short cuts into town and most likely where the best pubs are. (I can’t put my mother’s heart to that last bit!) He will have access to a personal mentor about anything if he needs it or is ever out of his depth.
Knowing how potentially vulnerable he is – but feeling so reassured all this support is in place as he not only studies for a degree (!!!) but becomes a man (!!!) I can put my maternal spade back in the shed for a while and breathe. And I now also have all this knowledge to share with others in the same boat and know how to advise parents-knowledge I didn’t have a year ago. So I hope this helps!
You see, I told you anything is possible with the right support, didn’t I?
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
Investing in autism: A Small Rant – July 17, 2016
In the UK we have this wonderful word called ranting. I hope you have it too. It means “talking loudly about something in an excited, angry way”. I am glad to say I rarely do but when the occasion arises it is always with what I call “righteous anger”.
I am a very happy lady luckily but today I was moved to rant.
I’ll share with you why.
I learned from one of my incredible academies for young adults with autism and Down’s syndrome, that funding for therapies has been either abolished or seriously and significantly slashed. This includes my therapy for which I won the community award last year for the groundbreaking difference I have made over the years to the students’ emotional and mental wellbeing as well as their focus, learning and productivity.
Even more established therapies such as speech and language have been drastically effected.
I am extremely fortunate that all of my students and their families immediately agreed to privately fund my therapy sessions due to the big difference it makes to their lives.
Why has this happened? Local authorities and educational authorities are simply not prepared to spend money on these children with differences. They are arguing that therapy as belong in the “social field” and not the educational arena. Yet in mainstream schools any child can access therapies such as speech and language for free to help their education and exam success.
The message is “regular” children and young adults are worth investing in but those with differences in specialist academies are not.
These academies have a terrific battle even to access funding and persuade education authorities that therapies are equally, if not more vital, to education and that child’s wellbeing and therefore productivity. The amount of forms is so horrendous and the fight so exhausting that many give up. One wonders if that’s the whole idea.
In the UK we have a huge campaign called “A Right Not a Fight” just to persuade those in authority that kids with differences have a basic human right to have a voice, to grow, to access a future in the way “regular” kids can take for granted. Isn’t this terrible?
Once a child reaches the age of 18, instead of accessing a future full of dreams and potential, these autistic young adults are often discarded by society and destined for a lifetime of “care” rather than achieving and bring fulfilled. Specialist academies who train up people with autism and different abilities are hidden away – or at least not made common knowledge – so funding cannot be accessed to help these people grow and learn skills.
Hence the rant. Do excuse me. I know exactly what my next few public speaking conferences will be about now! The fight goes on!
My next blogs will be about how we can challenge this and believe in our children.
I’ll be cuddly , lovely Giuliana again by then I promise!
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
The future for your child with autism – keep believing! – July 13, 2016
You will all be pleased and relieved to know that I feel so much better after my small rant. So let’s build positives from here…..
Firstly keep up the good fight for your child. Keep arguing for their right to grow and achieve, raise awareness of these basic needs and rights, and where a door shuts, keep believing and looking for alternatives.
Never, ever give up. At times it may only be you believing in your child. By doing this you’ll inspire others to be strong for their child too and the light and power of raising awareness and support grows brighter until it can’t be ignored.
For “higher functioning” kids on the autistic spectrum, like my son Ollie, don’t let anyone tell you they cannot achieve or aim for vocational college or art college or university.
In Ollie’s case, when the school told me no funds were available for him to access mainstream exams in an alternative, more negotiable format, I took it to county level and found out the name of the top lady who made the final decisions. We had a meeting and I described passionately but articulately to her the predicament of Ollie’s frustrating and unjust predicament. I explained Ollie was bright and capable and it would be a win-win all around if he had funding because he would personally succeed and be able to access the next stage of his life – and the college would get top grades to help their league tables. I talked so much! She became a friend by the end of it. (she had to!)
As we now know that funding got legally spent elsewhere within my son’s college. So if you get funding, make sure it comes in an envelope with your child’s name on it. Make the college accountable for every time they open it by regularly asking how they are spending it.
Learn from my mistakes.
Do not accept that your child cannot sit their exams at home or comfortable alternative. I argued that the school would get getter exam grades from Ollie if he sat his exams at home. He did! He would never have achieved so well had been made to sit in the intolerable pressure of an exam hall. At the very least schools should provide a separate room – and frequent rest breaks where the clock is stopped.
Fight for you’re child to have extra time in exams. My doctor at the time refused to help Ollie by writing a letter to the exam boards. So I made another appointment and took along the school SENCO and a notepad to record the meeting. The doctor wrote that letter. And I changed the family doctor to a more sympathetic practice elsewhere.
Keep fighting. Keep believing. Your child WILL achieve!
Blessings and light to you all ✨🌟✨🌟
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
Sometimes real superheroes live in the hearts of small children fighting big battles – July 11, 2016
Remember how I wrote that the seeds of who we become as adults are sown in the first seven years of life?
Well, many of our emotional reactions and responses to external stimuli are stored in a tiny almond-shaped incredible little piece of anatomy on either side of the brain called the amygdala. These are tiny but act as huge memory banks for these responses and lay down our stock reactions to situations as we become adults. It’s a biological, neuropsychological fact! Amazing isn’t it?
Why am I sharing this with you? Because it is not just the carers and teachers of autistic children who need to walk in their shoes and enter their world in order to understand it – it’s the community at large who need to learn far greater compassion and understanding. The world in general needs to move beyond the label of autism . Simply having heard the word autism doesn’t mean you have knowledge or understanding. I find that many people are aware there is such a condition but when I start talking with them excitedly, (as I always do!) they actually have very little clue as to what it entails – I’m not being rude!
Hopefully most of us bring our children up with a code of morals and guidelines of how to be good and kind. Hopefully we teach them how to be fair, tolerant, caring and open. Just as children in schools will take their lead from teachers in regards to how they see another child, (hence my absolute intolerance of unofficial labelling: “he’s thick”, “she’s a behavioral” etc), so they look to their parents for guidance in how they view the world around them and others in it.
Try not to be judgmental. If you see a child having an absolute meltdown in public, don’t stare or judge. You may not have a child with autism but for all you know that frustrated, embarrassed, protective parent does and the last thing they will need is condemnation or attention. Their child could be in total overwhelm and how you react laid those future responses down in your own child.
I’ve had to direct people like a traffic officer around the prostrate, yelling, red and angry body of my own small son and I have never forgotten the judgmental states of disapproval which shot like arrows into my mother’s heart.
If there is an autistic child in your child’s class, invite them to parties even if the parent comes along too. They’ll probably welcome it as I’ll bet they’ve been feeling pretty isolated too.
Behind every label is a child who is growing, feeling and wanting to belong. They are completely perfect inside however it comes out!
As the author of ” The Reason I Jump ” explained, most times autism is a personality difference rather than a disorder. His mother and teacher believed in him when no one else did. He “wrote” his book at 13 by indicating letters and has helped educate the world! I agree: it’s a difference, not a disorder.
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
Autism is not a word to be feared. It is a child to be loved
As many of you know by now, not only do I have my own amazing, strong, super talented, amazing son, I also work extensively in schools and specialist academies with children on SEN registers and with autism. It is the deepest joy imaginable to me when I work with these kids, listen to and respect them, build trust and then watch them open up and bloom. I know I’m supposed to be a detached professional but I get moved to tears often.
What I have learned from these incredible children and by making the time and space to really hear them, is that life in the classroom could and should be so vastly different from the living purgatorial so many of them endure, where it’s all about surviving rather than thriving – summoning all their courage and strength just to turn up day after day at those school gates and survive the day.
Isolation, bullying, struggling in a bewildering, overwhelming, busy environment is like an internal torture. This is when my work really kicks in and I value it as deeply as they do.
Going back to things I’ve shared with you all before, it’s all about educating from the top down. I don’t know about you but if I get a child on my books with a condition I don’t know much about, I am compelled to learn and research to better help that human being. I then look at all the positives surrounding them, their strengths, gifts and abilities and I start to build that framework, those foundations of support. Yes, some things are issues or challenges – but isn’t that true for us all?
Here are a few pointers that cost nothing – I’ve used them myself over and over within schools. I’m sure you’ll agree that autistic children get passions/ fixations/ obsessions? Isn’t it wonderful? Channel those passions! Make a classroom topic or exercise about that interest for that child. They will learn and absorb like sponges, barriers down. You could incorporate it into maths questions or a piece of creative writing . Everything can be slightly adapted. The child is included and thrives on contributing and succeeding. Channel all that gorgeous energy and encourage it.
Break down multiple instructions into simple bullet points. Do it for the whole class on the whiteboard so it is inclusive and doesn’t single that child out. I know from my own son that all he wanted was to feel included and to this day he has a mortal fear of being singled out or made to feel “stupid”.
Teachers, please praise these courageous, tenacious children and do it often. Positive praise naturally stimulates and releases serotonin – the happy hormone! No pills needed! Every human being thrives on feeling valued and praise from others. Happy children make for more productive, confident, willing children and calmer classrooms where everybody thrives and is included.
It sounds so simple but I’ve seen this work miracles.
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
Helping to educate through communication and enlightenment
It is all very well, as I did in my last column, to talk about “educating the educators” and introducing wisdom, compassion, understanding and support into the classroom. However, these things are often a fight and take time, so I thought it might be helpful to chat with you all here on a practical level about free or low budget ways to achieve this for our autistic children now. To take back a little control of our own situations – because families of autistic children can also quickly find themselves isolated.
As parents, as teachers, how can we stand by and watch these able, often talented young people drown and disappear while we wait and campaign for understanding and awareness at higher levels? You are all on this website right now searching for answers for today to make life more comprehensible.
As I’ve said before to teachers, ten minutes one evening or during a break time, looking up a condition or “disorder” can reap benefits throughout an entire academic year. My sister is a SENCO who looks after several schools. Anything she doesn’t know, she researches, to be able to best help each child in her care. With any job, any work, surely the objective is to continually grow? If you teach, this couldn’t be more important.
Communication is paramount. If a teacher cannot understand or connect with your autistic child, or says that child cannot achieve something and you know differently, don’t build up resentment or anger. This will isolate you and your child further. Talk with the teacher.
Throughout my sons education, each August, totally unknown to him, (I hope he never reads this !!) I would arrange a meeting through the SENCO, of every teacher and learning assistant who would be involved with him that academic year. I would talk for 15/20 minutes about his challenges and how to best help him but more importantly about his strengths and gifts – and crucially how to get those out of him so he could achieve and thrive. At that school he ended up in nine top sets and accomplished things no one thought possible.
When he joined the huge mainstream college at 13, I did the same, even though it was clearly not welcome there. I persisted – always very politely – and knew I was finally getting somewhere when every time I rang this 1,500 pupil school the receptionist would say “Oh, hello Giuliana” before I introduced myself!
I saved the teachers all the research by explaining everything they needed to know about my son. Where one door shut, I found another, or a window … even tunnels if I had to, because I believed in Ollie and absolutely knew he was capable of achieving. When I was told he “couldn’t” sit higher English, I got bursaries for him to join writing schemes and sent his work to authors. When I was told he had to do exams in the mainstream format because his funding had been legally spent elsewhere, I fought for him to sit them at home without pressure. He passed them all first time!
Communication, education and belief are all you need – gentle, strong, powerful weapons.
If we all do our bit at grass roots level whilst campaigning for autism support at higher levels, that shift from autism awareness to autism support and understanding WILL happen.
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
Support and understanding for our autistic children
Recent surveys in the UK have revealed that 1 in 77 people have been diagnosed with Autistic Spectrum “Disorder”. I have even read this figure to be as high as 1 in 58 in some areas. Considering it is tremendously difficult to even get a GP referral for your child to be assessed, and how many parents give up or wont even accept in the first place that their child has anything “wrong”, I am convinced that figure in reality is much higher. If you really stop and think about it, I believe most of us are somewhere on the scale – I’d probably zoom right off it if I was ever measured!
This means that across the board in schools every teacher will come across at least one child in their class per year with ASD. Remember what I shared in my last column about how vital that support and understanding is for a child with autism? That need to be included and valued? Well, the teacher training for autism is precious little in the UK beyond being aware of the label. In many cases autism training doesn’t even exist! Can you imagine? A large part of my public speaking role is now spent addressing this very issue and I highlighted this huge hole in our education system in my book too. It is time to “educate the educators” and watch this important work filter through and take root.
Not every disability – or different ability – is visible and this leaves these precious and valuable children highly vulnerable. You see with labels come all the perceived limitations, lack of expectation and negative connotations. If a teacher has no idea what it’s like to enter the beautiful and often very creative world of someone with autism, how can they possibly know how to gently support that child, tease out their talents and strengths, include them and help them grow?
Instinctively other children in the class take their lead from the teacher, learning their own attitudes towards that child who is different. And so the danger of unofficial labeling begins.
“He’s a behavioural” … ” She’s educationally sub normal so won’t achieve …”,
“He’s disruptive” … and so on. The child becomes stigmatized and isolated.
It is a shocking and sad fact that so often autistic teenagers, particularly high functioning autistic kids, then pick up mental health issues they needn’t have suffered, such as OCD, anxiety, depression, suicidal thoughts, even psychosis – my own son included.
I applaud and my heart leaps out to those “autism moms” who like warriors for their children try to educate, at grass roots level, those around them, whether it’s through constantly speaking with teachers, fighting for funding or writing letters to other parents about their child so that they are included and understood. I’ve been there countless times, watching party invitations bypass my own child and being told he will never achieve. Moms and Dads, don’t ever stop your amazing, necessary work! With support and understanding, school can be transformed from a living purgatory into a gorgeous garden in which to bloom, a basic right most kids can take for granted.
If we fight for each autistic child, teach others how to walk in their shoes, fight for teachers to be properly educated about this condition, we will change the future for these beautiful children and in doing, so the future of our world and the acceptance and celebration of the gifts and abilities these unique children bring.
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
Give me the child until seven and I will give you the man
An old Jesuit saying that often baffled me as a child. What it means of course is that so many seeds of the adults we become are sown in the first seven years of life. What a huge responsibility it is therefore – an enormous honor – for parents, teachers, carers and all those who are involved in those formative years. This is all the more important when that young, unformed human being sees the world and interacts with it in a different way. That listening to them, the really hearing them, the valuing and nurturing of them as they find their way through the overwhelming, sometimes unforgiving world around them is even more vital. It is a life raft. And the future rewards for both them and you are a hundred fold.
We need to be a whole lot more inclusive as a society and this can only come through empathy and understanding . Yes, it is wonderful – miraculous even – how fast our works moves and how connected we all are at a moment’s notice. But we have lost time: time ti deeply listen and time to understand.
Autism is a lifetime condition, present from birth. That is why the information and support surrounding these beautiful children must be there from the start. Along with the challenges these children experience, come huge reserves of strength, courage and sheer tenacity to find a way from A to B. Above all it is important to find the gifts of the child – their song, their passion – and to surround them with unswerving belief. Don’t let yourself or the child ever be defined by other people’s limited views or expectations.
If you are a teacher and have a child in your class with autism, take five or ten minutes out of your week and google their condition, read an article or visit a website. That ten minutes of your time will make an academic year’s difference in the most positive way for that child – you’ll have opened a window into their world.
If you’re a parent and feel the understanding and support for your child isn’t there, write or print off some information for the class teacher to read, even if it is a few bullet points. Where there is the darkness of ignorance or fear, beam in the gentle light of knowledge and understanding. Support can then blossom and it becomes a partnership of belief and nurture surrounding that child and the whole experience changes in the most beautiful, positive way.
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
“We, too, want to grow ” Naoki Higashida, The Reason I Jum… June 21 23, 2016
So much of my writing and public speaking work to date has been involved with raising awareness of autism. However, more recently this has not been nearly enough. I’ve experienced a huge surge inside of me on every level that this needs to be dramatically raised to the the understanding and support of autism. Yes, it is indeed wonderful that more and more people are aware there is such a condition as autism but it rarely seems to get beyond the label and often the connotations and associations with that label seem to be negative. With diagnoses of autism increasing rapidly, it is long overdue for the world to begin to really see and understand beyond that label.
So I’ve gone about my more recent radio work and interviews, public speaking and writing, with a view to actually putting people inside the minds and bodies of those with autism. To give them a 3D journey with the feelings and experiences as if they were being invited to walk in those shoes for a few weeks or even just one day. To leave them in awe, humility and respect. To educate them in what it actually feels like to survive , try be accepted and be allowed to grow in a one-size-fits-all world that can often be judgemental, closed, ignorant and unforgiving. There is still so much fear and a lack of understanding surrounding this condition. It’s time to bust the myths and see unique individuals with all their gifts, strengths and positives – and to see “disability” as different ability.
We all belong to the human race yet we are all unique individuals with great gifts but some things we find challenging. So it is with autism. There are some traits and issues common to the condition but behind this label are special, unique individuals who just like us have issues but also tremendous gifts, human beings who want to grow like everybody else , have the same chances and choices to achieve their full potentials and give back to society. They want to be seen as they really are, to be heard and what they say to be valued, to be supported so that they can bloom too. These gifts of seeing, hearing and supporting, from one human being to another, cost nothing. Yet can and do make literally a whole world of difference to the outcome for the individual as they grow into adulthood and the future. These gifts should be in abundance for anyone living or working with autism. They are gifts that should be exchanged between all human beings, whatever our labels.
If I was paid a pound or a dollar for every time someone has said to me that had they felt listened to or if just one adult had believed in them as they were growing up, their entire world would have been so different, I would be rich beyond measure.
Where do we start? My next few columns will be centered around exactly that!
Giuliana Fenwick www.therapiesforspecialneeds.co.uk
Where it all began : Ollie… May 23, 2016
As promised, I would like to share a little more about my courageous, amazing son who exploded through the myths and negative limitations surrounding his ASD, is blazing a trail and inspiring so many. As my work began with him, it seems only fitting that I begin with him here.
I knew Oliver was different from birth. He seemed startled and overloaded by our world from day one: slow to speak, when he finally spoke at 3, it was with very precise, articulate, almost antiquated sentences.
He communicated very early through writing; a little word magician with ink in his veins, a shapeshifter becoming all the things he wrote about. With social situations a foreign and inaccessible land, words were his world.
After almost drowning in his early years at school, socially and academically, Ollie’s gift for writing was the life raft that saw him through.
After fighting to get referred, Ollie was finally diagnosed with Aspergers at 9. Yet he was Ollie, never a label.
At middle school, Ollie’s gifts were nurtured and he was in nine gifted and talented sets in spite of persistent bullying.
At 13 he joined the vast mainstream college and the one size fits all exam system descended. English became a quagmire of multiple choice boxes and lining up booklets; things his autistic brain couldn’t negotiate.
I fought for funding at the highest level so Ollie could access exams differently. It was legally spent elsewhere. I was told he would “never achieve anyway”.
Shockingly, Ollie was plunged into bottom sets, including for English, his passion. His dreams over, Ollie sobbed that he was “broken” and “disabled”.
I drove to his college and read his poetry to a wall of six grim faced teachers who refused to let Ollie sit the higher English paper needed for university . Ollie unravelled and spent the next year seeing psychiatrists as he picked up all sorts of terrifying mental health issues . I began my therapeutic massage on him to tremendous effect and sent his work off to authors who personally replied saying he as a ” writer already “.
They saved his life .
Ollie achieved all his exams, a huge testimony to his strength. The psychiatrist said Ollie and I had “changed his life”: “Here is an able and gifted boy who was totally disabled by the mainstream system.”
Ollie’s dreams of English had been obliterated – yet he has joyfully accepted a place at his first choice university to read creative writing and publishing .
Hello – An Introduction… May 20, 2016
Firstly let me welcome you to the first of what I hope will be regular columns for this very prestigious company.
My name is Giuliana Fenwick www.therapiesforspecialneeds.co.uk. I am a specialist therapist working with children and young adults who are on the autism spectrum and SEN registers at schools and academies. I train parents, teachers, professionals and charities all over the UK and Europe in my therapies and run many talks and workshops. I am an author, public speaker and fundraiser for autism and special needs. Above all I am the proud and deeply blessed mother of an 18 year old autistic son, Oliver, who recently proved all his doubters wrong by achieving a place at his first choice university against every conceivable odds.
The small post I wrote about this on LinkedIn went viral, bursting through 20,000 likes and comments, not to mention the thousands of private emails I received and am still receiving.
It was actually when ollie hit his lowest point at 13 and told me he was “broken” and “disabled” that I began developing my therapy. It is because of Ollie that I now do this very important and fulfilling work and wherever possible he accompanies me to talks, trainings and public speaking events so he can see for himself how his courage and strength touches so many.
Rather than patenting my therapeutic techniques, as so many advised, I wanted to just share them so no child or their family would ever have to walk the terrible path my son and I did as he picked up mental health issues , unravelling until he was “broken”. The result is my book,”Indian Head Massage for Special Needs” which I hear is helping so many and in frequent cases, “changing lives”.
So that’s me out of the way and now I’d love very much to get on with the important work I wish to share and inspire you all or at least get you thinking over my next columns .
I’ll share a little more of Ollie’s story and describe what it’s like to walk for a day in the shoes of someone with autism. I’ll explore the huge strength, courage, tenacity and tremendous gifts that autism brings. To look beyond the label and it’s limitations and to support the valuable contributions autistic people can bring to education and the workplace, examining how we as a society need to be so much more knowledgeable, supportive and inclusive.
Giuliana’s journey – author, therapist, public speaker and mother to a beautiful autistic son