I opened my son Ian’s book bag, and I felt like someone punched me in the gut. I was overcome with conflicting emotions of happiness and devastation – all due to a worksheet he completed at school about the word: Danger.
He was so proud to show me the worksheet and explain that danger meant, “It can hurt me”. I replied by saying, “Ian, did you know what ‘danger’ meant before Mrs. C taught you?” He just replied – “danger means it can hurt me”.
I was happy because he was so proud of himself, he took the time to share his accomplishment with me, and he learned! That is what I hope for of course. The part that knocked me through a loop was realizing that ‘functional reading’ is the level he needs and, to be blunt, I was devastated to realize that.
It was then, again, I was reminded of how autism has delayed his abilities. I’m so grateful to the classroom staff he is now with, because without them, Ian wouldn’t be doing so well and, overall, he is doing exceptionally well (especially compared to last year; the worst year of our educational lives).
It was sad. To me anyway. I think it’s sad that, at 12, we’re not reading classic novels and pieces of literature. I think it is even more saddening that Ian couldn’t answer my question. If you would have asked me, I would have told you, yes – Ian knows what danger is and means.
I learned a long time ago how to manage these emotions that surface in waves, triggered by unexpected and small events, so everything I’m describing took place in only a few seconds. I quickly reminded myself to move on, think about our losses later, and focus on how glad I was that he was learning and proud of it.
If he needs functional reading, so be it. I want him to work from his current level of ability, so as he develops, we’ve stayed on developmental track. At the same time, I want him to be like most 12 year olds who do not have cognitive disabilities – the reasons I wish for this is a novel in itself, so I’ll spare you continued discussion on that!
A lot of parents tell me they wouldn’t trade autism or take it away. It is part of their child and they can’t imagine their child any other way. They talk about the positives and what they’ve learned from being the mother of a child with special needs. I understand, but I do not agree.
I’m pleased, near jealous in a way, of those with such contentment living with autism or special needs. In my own way, I too am content, but it’s with my life as a whole; not with autism or Asperger syndrome. I’ve learned a lot also, and view the world differently then if I had never been introduced to disability. There are positives of parenting, I agree to that also; each child brings rewards that cannot be duplicated elsewhere.
However, if I could take autism away – I would do it in a split second. I would do near anything to have it disappear.
I can imagine my children without disabilities; I do it almost everyday. That is what I work so hard for. That’s my motivation; I have today, tomorrow, the day after that and, God willing, many more years to continue helping my children. I don’t want to feel contentment; I fear complacency will come and, for me, I refuse to rest on my laurels and accept autism or “the way it is”.
I was told to pick an institution, told Ian would never talk or be potty trained, laughed at, yelled at and talked about. I lost professional affiliations for my refusal to listen then, I lost support from parents who thought I was hard-headed or self-righteous and, you know what? If I would have listened to any of them, they would have been right.
Instead, they were wrong and, while we are not ‘free of autism’ by any stretch of the imagination, we’ve already surpassed their best case scenario and have not looked back even once.
I know my son will most likely always have autism or the effects of it. I don’t think I’m going to cure my son or anyone else.
But,that doesn’t mean I’m going to stop trying.
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