I have been reflecting over the past week about how important it is to me to share the experiences that I have had parenting a child on the Autism spectrum. So many of them have been positive, and although they have challenged me, I am more because of these experiences.
However, there have been some difficult times, when stress has been high and I have felt fragile – even brittle. There was a period when we were in the midst of the diagnostic process when I could no longer read a book for enjoyment. I just couldn’t focus or keep my thoughts on the text, and too, anything I read seemed so meaningless and trivial. Advocating for a child with challenges, especially invisible ones, can be a tireless and unending job, but I am more because of these difficult times as well.
Yesterday I was reflecting about when we first had to participate in School Based Team meetings. As a teacher it was a mind-bending experience to suddenly find myself on the other side of the IEP table. It was not where I expected to find myself. I had taught special education students, but I had never envisioned having a child with such challenges.
Even though I knew the process from a teacher’s point of view: the first time I went into a meeting as a parent I was so anxious. I found these meetings stressful and exhausting. Part of my stress was generated because I was trying so hard not to cry. I felt uncomfortable and embarrassed about my tears and didn’t want the school to think I was emotionally delicate or on the brink of crumbling. Honestly though, I cry during movies and sometimes even commercials, so it makes sense that something much closer to my heart would evoke an emotional response.
In retrospect – I think the tears were a part of coming to understand and accept the journey. There may have been a grieving for what I had imagined would be. I don’t feel this anymore – if I could pluck the autism out of my child – I wouldn’t. Of course I understand that this may not be the case for every family, but the differences in the neurology of my child are part what makes him who he is – and he is remarkable.
I still sometimes feel a kind of forward aiming grief for what I imagine will be the future and continued struggles for my amazing boy. I fear for his vulnerability, and I hope for his future independence. I worry, and then I try to put this into action. I work to support educators and others in understanding experience of children on the Autism spectrum, and I look for opportunities to build the social cognition of H and other children with whom I work. I present workshops to other educators and even to university students (future teachers) …and now I find myself writing this post.
I have accepted my tears and in meetings I am mostly over this now, not the crying – just the being embarrassed about it part. I bring a kleenex and if I get passionate about my child and tear up – so what!?! The meetings are an important part of creating and sustaining a critical support team for my child, and we are grateful for this.
Even with my knowledge of the system and the functioning of the School Based Team, I found the process challenging on an emotional level. I can’t help wondering then, whether parents with less familiarity might at times really find the process overwhelming. I hope to walk the next steps of my journey aware that experience can be a lesson in understanding others.
I also keep an extra box of kleenex…
30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.
© Leah Kelley, Thirty Days of Autism, (2011)