Over the years I have been hyper focused on raising my son, who has autism, rather than spend my time searching for answers as to why he has autism, how to cure him and what are the latest and greatest therapies. Early on I had a painstaking decision to make. You might think the decision is obvious but having lived through it I can tell you - you have no idea the hell I went though. When your child is newly diagnosed with autism the experts say the only thing that will help is “early intervention” and with waiting lists over two years long and exorbitant rates for private therapy averaging $100/hr a mother has to spring into action. We feel the constant pressure to study, internalize and apply ways to stimulate our child as a means to take them out of their bubble and bring them into our world. When my precious little boy was only a year and half old I was paralyzed. I couldn’t even do a puzzle with him. The thought of being a therapist to him (a choice a lot of mama bears make) had me frightened to death and so I took the other route and decided to be mom. I want more than anything for my children to feel safe with their parents – in our home – in our life. I feared Keyan would hate me for pushing him to his limits in an attempt to draw him out of his bubble. My logic at the time was I can pay any number of therapists to help him but only one person could ever be his mother.
As he grew older and other children on the spectrum seemed to progress nicely – I felt guilt. Did I make the right decision? Maybe I could have taken Keyan farther had I applied myself more – had I forced myself to work with him – work on him. I watched as other children learned to speak, learn to read, play sports and attend regular school. In fact, these children were on the spectrum and didn’t know it – their parents only telling them much later in life. Was it because of me Keyan wasn’t progressing as quickly? My son was so limited I always said he learned at a snails pace backwards. I did have guilt for a long time until he hit adolescence. His body started to betray him and he started to feel things he didn’t like. I can tell you he found comfort in his mama bear. I know that for fact because as he aged he began to develop separation anxiety – he preferred to be with his mother and father over anyone else. It became increasingly hard for me to drop him off at activities because to him the separation from me could only be made at home. An prime example is the bus can pick him up for school but I cannot drive him to school – in his mind things just don’t make sense that way. Then I look back and think Keyan’s brain is Keyan’s brain and I gave him everything a child needs, which is a safe and loving place in his mama’s arms. Every ounce of my 5’11” baby bear loves it when I squeeze him tight.
As my son ages I am more interested by what the research says in terms of supporting his well-being. I am not talking about potential miracle drugs or cures for autism but rather how to support people on the spectrum on their life’s path. How we as a society can employee people on the spectrum and how we can support those who will never make it into the workforce. As I look to the day when my 21-year-old son will no longer have access to school – I fear for his future. When we fear we search for answers to make ourselves feel better. I found a lot of the answers I was looking for at the Geneva Conference for Autism that took place last week in Toronto. I attended the 3-day conference to listen to speakers from; Canada, Belgium and the USA, all covering different aspects of the autism experience. It opened my eyes to new research, validated things I already new and made me realize how hard it can all be. At one point I sat in the audience wiping tears as they streamed down my face. It was informative but obviously really emotional.
Most of the conference focused on higher functioning individuals which left me feeling cast out in a place I thought I would most fit in. Having made the decision to leave my family for 3 days I needed to get something from this conference. I had to allow myself to feel the hurt, discomfort and disappointment but then I had to flip the script. What can I take away from this experience? Take the information and apply it to what I already know for sure. I am a mother to a boy with autism but I have also worked with others children over the years. I tell myself, Audrey its easier for the researchers and scientists to collect information directly from people living with an ASD. Don’t take it personally – it’s just easier! You are here to learn and apply to your own life experience. I take every nugget I can get a hold of.
So much information was gathered that I left every day exhausted, my brain feeling like it was going to explode. What did I learn most that I would like to share with anyone reading this … all people living with autism see the world differently and if we pay attention we can see what they see. It is possible to learn to support them. Without exception a person with an ASD lives in a constant state of anxiety and with a number of sensory issues (albeit different for each person). If we address those two concerns rather then focus on pushing an individual to their limit then we can get more out of them. The outcome will be far more successful. Like anyone else we have good days and bad days – pay attention and know which days are which.
Therefore, this conference validated for me that Kunal and I have done right by our son. We are conscious of the fact that Keyan’s anxiety can be a hindrance in his learning but we have to address his comfort level before he can learn. We always say as long as our children are happy and healthy then we have done our job as parents. This conference was a constant reminder of how my son is a lot like me. I don’t have autism but I have a severe anxiety disorder and an array of sensory issues. As I age it seems as though my sensory issues are getting worse: flickering lights, escalators, blowing fans, heat etc… things bother me more. When I am uncomfortable in my own skin it can potentially lead to a panic attack. I have learned to manage most daily occurrences but when I am out of my element, like when I travel, things become more difficult. (My next BLOG about Lisbon will include the challenges I had to face). Like Keyan when I am anxious I cannot function properly – never mind being available to learn.
This is just a sample of what I learned at the conference and I want to share more with you. I promise to bring more to you in my upcoming BLOGS.
Thank you for reading
Mama Bear – xox