We wait all year for summer - no coats, hats, mittens and zippers to add ten minutes to our morning routine. We can go to the park and zoo whenever we choose. You see kids everywhere you go. And that, my friend, is the painful part of summer.
We just spent a week at the beach with wonderful weather. Families were all around us enjoying the water and sand. I watched the toddlers and preschoolers do things my six year old still cannot accomplish. (However, we were thrilled this year, as this was the first year he didn't eat any sand!) I watched parents sit on their blankets with a watchful eye on their small children, while I had to stand right next to Connor in what I call "hyper-vigilant mode". You just never know what he will do and you can't be more than a few steps from him, especially near the shore of Lake Michigan.
I try, I mean I really try to not let this get me down. We are so blessed for all he can do. Who am I to complain when other families have it so much harder? It is just sometimes, to put it politely, I want to kick autism right in the backside, hard.
Update 2020
4 years ago
1 comment:
I can certainly relate to the "Summer Pain" - I have lots of it too. I hope it is OK that I write about my son's disability even though it is not Autism. My son has Stickler's Syndrome and has gone blind in one eye, rapidly losing vision in his other eye. Have you figured out who this is yet? Yes you know me my cousin!! Matthew (8) cannot play any contact sports and whenever he is around other children (which is like always in the summer, like you said, kids are everywhere) I have to constantly watch him because a hit to the head like with a ball or frisbee or toy, or a hard fall to the ground could cause his remaining retina to detach (it is very fragile), thus any of his remaining vision would be gone. He had a bad fall a few months back and is now subject to lengthy and sometimes painful retinal exams every month or so.
I too watch the other moms and dads relaxing with their kids and wish I could do that. I wish I could tell them how lucky they are but it wouldn't work - they totally take a healthy child for granted. It is hard to not be hovering around him because I want him to grow up with some kind of sense of independence, but if I can prevent blindness - shouldn't I choose that? These are the really tough questions that no one can answer for us. We each have to make our own way.
Matthew is learning Braille in school now and for now I told him it will be a special skill he will have - to be able to read without lookng at the page! I suppose it is selfishness that I cannot bring myself to tell him he will most likely be blind at some point in his life.....however as smart as he is, I think he already knows this, and he spares me the agony of actually having to say it. He is my hero!!
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