by Natalie Jaro
We as parents of autistic children are braving a fierce storm. In the midst of that storm, it is not only imperative that we think of our children, but that we also remember to think of ourselves. That we honor and support ourselves with the fuel we need to help our children in the best possible ways we can. When I first learned that my son had autism, I grieved—maybe not the same way you have or someone else has, but I grieved in my own way. Maybe you’ve just found out your child has autism, maybe you’ve just been hit hard by a challenge farther down the road long after a diagnosis, and that difficulty is bringing the grief to the surface all over again. During these times, certain questions come up, questions like, ‘How can I deal with this in a productive and healthy manner?’, ‘How can I stay positive and helpful during this time?’ or ‘How do I develop the stamina and courage I will need for what this job requires?’.
Some people get through hard times because of their belief in God or with the help and support of a loving family or friends or both. For me it has involved learning how to be good to myself, I am only helpful to my son in so far as I can keep my own bearings. Just like you, I was born with a unique temperament, a set of strengths and weaknesses that nobody else can rightly judge or understand. I am the only one who can provide the support and understanding that I need. I know myself best and during the past few years that I have been dealing with my son’s diagnosis, there have been certain things I’ve done or ways of thinking about things that have kept me grounded. For example, Elisabeth Kubler-Ross’s model about grief has helped me. In her studies she came up with the premise that grief has five stages: denial, anger, bargaining, depression and acceptance. By putting what I’m feeling into this context, it makes what I’m going through a little less confusing, complex and unfamiliar. I can accept that these feelings will not be with me forever, that what I’m going through is normal and manageable.
A helpful person once told me, “The only way out of pain is through it” and it is this path I have chosen, to make way for a more honest view of the world and of myself. I have had to learn to take both my own and my child’s needs into account, neither putting my son above or below my own needs. The more I sacrifice of myself isn’t what is going to make me a good mother, what I have to give is going to be determined only by how I sustain my own strength. For everyone this is different, depending on circumstances, health, stamina, age, financials and the like. But the five stages of grief are a helpful reminder to me where the goal isn’t to just get to acceptance and then it’s over, but merely to appreciate this process as a part of the human experience that will ultimately be visited and revisited time and time again. Acceptance is that ray of sun that breaks forth from behind the clouds occasionally—it’s a moment, an epiphany, a promise that everything is going to be okay somehow.
After a time in acceptance, I will often be thwarted and discouraged whenever I move back to anger or depression and then I have to remind myself that sometimes its two-steps forward, one step back. When I have become accusatory, impatient or frustrated, when I have wanted to blame someone, I remind myself that this too is natural, but, it is ultimately, unhelpful. So then I will focus and find a way to release those normal feelings. I will start with small things like: taking a bath, exercising, talking to a friend, eating well, reading a self-help book or going to an online forum with other parents of autistic children to hear that I am not alone. Some parents rise high to the occasion, they become volunteers at their child’s school, they start a support group and much more. I remind myself always to be kind to myself, to not compare myself to what another parent may be able to accomplish. In doing this, I discourage myself and ultimately ruin what positive support I do have the capacity to offer my son.
As of yet, we have no control over the storm that is autism, but what we do have control over is how we can brave it. Courage is something I personally have had to work for, it has not come naturally or easily and it isn’t easy for me to hold on to it. Still, the infinite love we have for our children compels us forward; I think this is what will see us through in the end.