October 5, 2020
Sometimes it’s hard to feel like the Zoom sessions with Bradley did anything good. Mostly, I felt like I was just torturing my son. I would try to prevent these damaging behaviors that would often lead to him hitting himself in the head with his own fist, hitting his head on the table or his chair, or trying to hit me with his fist, or hitting me with his cups or whatever he could find. When you want to talk about being pushed to the edge, these are the kinds of situations that make you leave the room to gain some semblance of control and the ability to react without responding. You see I also have been reading and rereading a book about Behaviors in Children and Adults with Down Syndrome. Respond but don’t react. Easier said than done when you’re kid has hit you so hard with a fist or object that you aren’t sure if you are bleeding or not. Or if that shadow under your eye is going to turn much more prominent and make people wonder. Yeah, for forced isolation.
And the thing is, all of us parents from his school class were busy texting and talking with each other, and I know that this is not happening with just my son. All of us were experiencing these upticks in behaviors, and while most removed their kids from all Zooms, all pretense of school, and had no therapies; in our house, we were pushing forward as if the mere acceptance of stepping out was an impossibility. This quiet suggestion that Bradley should be on his IPad all day to limp through this strange existence like in most of the other houses that I knew of with a child with special needs; and yet, the sense of failure that I had hanging over me at that option, was somehow more than I could bear. He could only learn for so long, so he was already on it more than ever. My brain was constantly ticking through the options as I tried to implement ways to make him successful at home, with phone calls and emails in order to try to find a way to make him successful with his other therapies. And I was tired. A full house means more attempts at making meals and more often, what will Bradley eat today and if he won’t is he getting the right amount of Pediasure to make up for it. How can I increase what he will eat and how can I keep his calories in the right place. Spending more money online to bring in the kind of tools that he would see in feeding therapies, and behavior therapies, and getting better at the computer and the laminating machine. But also trying to help all the kids hold it together - especially the oldest...trying to keep the additional stressors from being crippling to them, to Eric, and to me. Using every tool in my toolbox to help them move through this quarantine with ability if not with ease. I reached back into my memories of trying to cope with Bradley being so sick, with his immunities being so weak that our lives had to be so small, so contained, and I tried to remind the girls of those times and how we got through them then, and how that is how we would be able to get through this now. There was laughter and tears, there was anger and bitterness, and there was pain. The physical and the mental - the emotional kind.
And through it all, I knew that this was hard for them, but that this was the hardest on Bradley. Our boy who had been so isolated for so long, was getting out into the sun. He was riding the bus to school for goodness sake. He was making friends with classmates, he was going two places for therapy - and going often. And he was making friends in those places too. Other kiddos that he was learning how to approach and ask “Come play, please.” And then it was gone.
So what did we do? What else could we do? The best we could do everyday, and each night I would push aside the dread of the upcoming day. A mind numbing dread that settled over me like a cloud that I had to force myself to not give in to, and I pushed myself to ignore. I settled into work, hours and hours in between school and therapies for Bradley, I would fill my time with either work to find some way to make the next session easier, more beneficial...or my work. Anything to keep the dread at bay and the hope still burning.
At the end of the day, we found that there were some tools that were beginning to work. We implemented full time use of a Token chart. Every time we sat down for school, or therapies there was a token chart with ten little Velcro pictures to put on as we made our way through the session. We used a visual schedule for his Occupational and Speech therapy, where he could check a box after each activity and knew what was coming next. And though he hated coloring, when we used a timer, Bradley would agree to practice coloring. I kept a large sized box for behavior therapy, and four days a week for two hours, we would work through my box. Puzzles, play-doh (did you know that Play-doh when shaped like a ball really flies like a ball?), coloring pages, Therapy putty, bubbles, matching games, word builders, marble runs, and math builders. There is more in there, but that’s the basics of how I figured out how to get him through his therapy times.
Where are we now? He’s finding his voice. Where before this he would never sit with me to work, now he will, and he doesn’t always complain about it. Weekends provide the down time, and now he is more willing to get up and dance, to try to build his car tracks, to build blocks with us, to do his math boards or build words. Though he doesn’t choose them, when he realizes he is bored on the weekend, I can offer the word building and the math boards and he’ll do both with me. Somewhere in there, he’ll ask to dance too. And some days he needs and wants to sit in the hammock and swing, but this one tends to be on a day when he is feeling super stressed because that tends to put him to sleep. And then when it seems that he has quieted his brain, he’ll ask to return to his movie again.
Did anything we attempted to do during those very long Zooms, and those extremely long and stressful days actually do any good? Maybe, he understands his Token Board and how to get what he wants by doing his work. He can now blow bubbles, which he couldn’t do before. He is using his voice, but he’s been back in in-person therapy since the end of June, so that might be all from then. Mostly, he is thrilled to have someone in person to work with him and that seems to be the true catalyst to the sudden explosion in his use of spontaneous words and definite interest in repeating language.
His behaviors are so much better, he is a happier kid. He is able to communicate more of his needs, and we have learned to help him work through his behaviors so that we can all get to a better place, a better chance to provide what he needs or make him understand why he can’t and when he can get what he wants. But that is a whole other blog for another day. :-)
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