If you're reading my blog you already know that April is Autism Awareness Month. Coincidentally, its the month we celebrate our son's birthday. This April I find myself particularly "aware" of his autism because he's turned thirteen. THIRTEEN. He's a teenager! Or as he puts it, "Now I'm big, big, BIG!" How did this happen?
He began the day in a manner which is most atypical for a teenager; he climbed into bed with his parents and was turned into a sandwich. (He was the bologna, we were the bread.) Deep pressure plus affection equaled one happy boy. I almost wrote happy little boy... but I must remember that he's not a little boy anymore.
With a child who has a developmental disability, that's easier said than done. He always acts younger than he is and admittedly I have a tendency to treat him that way. "Stop babying him," my husband says as I help B. towel off after a shower. "He can dry himself!" Well, yes and no. He does most of it himself but invariably he gets distracted and misses some important areas. "I have to make sure he does a good job," I say. "I don't want him to get a rash!" Well, it's true. You can only prompt so much...
I know, I know. My husband is right; I am babying him. I'm a mommy and he's my little... er... my boy.
Back to that morning: After twenty minutes of getting snuggled and sniffed I peeled myself away from the rest of the sandwich and and took my own shower. I dressed quickly and left the house as Hubby attempted to get the birthday boy back to sleep for another hour. I would have loved another hour myself, but I had a previous commitment.
It was a leisurely twenty-minute drive to my son's school where the staff was running a respite weekend. They needed a nurse to drop in and administer medications to about a half-dozen boys since the school nurse was working a Girl Scout trip. The boys were all in the middle school program with my son. Some were chatty, some were stimmy, some demanded to know the whereabouts of the regular nurse while others seemed not to notice any difference. All reminded me of B. in one way or another.
I drove home with the windows all the way down and my mind just slightly open to the concept of Respite Care.
Respite \ 'res-pit \ n 1: a period of temporary delay or reprieve 2: an interval of rest or relief.
Yes, we all know having a child with special needs is stressful. You end up putting your child's needs first and your own last. It can have a negative effect on your health, your marriage, your career. Studies have shown...
Oh, blah blah blah. He's my child, I'm his mother. I'll always take care of him; that's the way it is. That's what love is all about. And yet, here is my child that is no longer a child. Whether I like it or not, he is a teenager and in a few more revolutions of the Earth around the Sun he'll age out of the school system and be... what? Will he ever be able to hold a job? He certainly can't spend the entire day watching television and playing games on the computer. If only to give him some opportunity for recreation and socialization with his peers he'll certainly need to attend some sort of day program. And I'm sure that, as my husband and I continue to age, the "intervals of rest" that a program would provide would be more necessary and more appreciated.
When I returned home it was time for presents, cards, and more snuggles. "No cake!" my son reminds me. "NO CANDLES!" Candles freak him out, big time. I decide to put aside any unpleasant thoughts of the future and concentrate on the joy of the present. But it will only delay the inevitable; I have to face reality sometime.
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