Life has been rough. Screaming child whose butt is rubbed raw, who cannot focus for long, who reacts against any 'demands.' Merely suggesting we read a different book elicits yowls of protest. Still, through all this, I am seeing flashes of progress. James has called me "Mommy," clearly and audibly, several times this week! Not "om" (without the first "M"), not "Mama," not simply mouthing the word without sound, but MOMMY! I have waited seven years to hear his sweet voice say my name and I pray I will hear it again and again. We are also receiving some pretty great unexpected hugs and kisses. Like a hug around my hips when I am folding laundry or a smack on the lips while we are playing catch! While he was eating fast food in the car, he even put his dad's milkshake between his legs because he wasn't ready to give it back yet BUT wanted to reach into the bag for another french fry! Amazing problem-solving skills with great dexterity in a moving vehicle! Maybe not for ordinary seven-year olds but PHENOMENAL for my extraordinary James. I also love that these new strides are not specific learned skills (like puzzles or coloring or writing) but ones he has made up and implemented.
I guess it is safe to say he has officially achieved toddler status! That brings up something else we have been talking a lot about: how old James is - seven - and what does that mean? I have stopped paying attention to how James is functioning on a 9-month old level for one thing or a two-year-old level for another. I can't keep track of all the different levels and they are no longer helpful to me in forming my child into a functioning person. I am not simply ignoring it all because it is sad to see him measured at some super slow level, I just don't care. Keep records, fine - do whatever to keep those services coming! I have to focus on James as a person and what we can do to get him to functioning level in life. Let the board of education get him to perform whatever tricks they need to chart his progress! Let them worry about his less than pre-schooler abilities. I need a kid who will pay attention comprehend, respond and interact. A kid who WANTS to interact! What his strengths are and how I should encourage him to use them.
All this time alone with James, with no school and no therapy, shows me that I have to retool how to function as James' mom. Sure it was rough. I secretly sobbed in the bathroom. I was wrongly impatient. I snapped at my husband because I internally viewed his business trip as fun free time. Regardless, it wasn't that bad. It showed me that I should not rely as much on school and therapy. During his Early Intervention days, we were clueless on how to deal with James and looked to the therapists for answers. Now we see that they were educated, but could only provide suggestions, as there are no specific answers. But for James, I think we, as parents, can. We can and will find answers for him. Not so he can magically be brought up to the functioning level of a seven year-old, but so he can be brought up to a functioning level period. The cart boy at Target does an amazing job. He retrieves all the carts quickly and wipes them dry. He covers the ones stacked neatly outside. He has a job and takes it seriously. Is he functioning at his age level according to some test? Undoubtedly not. But another kid, typically functioning, could not do his job. This teen's dedication and tenacity is beyond his years. This is why I don't care. James is autistic but I will not pay mind to some societal definition of the word.
1 comment:
I am so glad I found your blog. You are an inspiration to me. I have to keep reminding myself that what Landon can do now is all we should concentrate on. That's hard to do when I walk into his classroom and see the other kids copying their words off the board and he's wandering around the room. It's hard to do when I see on the board how many books the other kids have read and Landon hasn't. But, I can't let myself get drug down into that. You will understand how excited I was the other day when he brought home a picture of a flower he had colored and instead of it being all one color and out of lines, every petal was colored a different color :-). That's a BIG deal for Landon and it made me so happy. I think James is a very lucky little boy to have you as his Mother!!
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