I have an alarm set on my phone to contact Jude’s teacher daily during his conference period. The doctor increased the clozapine last Thursday and we already see noticeable changes. Yesterday, his teacher said he had taken two naps, but was alert when awake. He didn’t make it sound like he slept the day away and I’m hoping some of the grogginess wears off as his body adjusts to the higher dose. One of the first changes we noticed when we decreased the clozapine a few months ago was increased activeness. On the old dose, Jude went straight to sleep when it was bedtime, but as we started to go down, he was staying awake longer and getting up and down after we put him to bed. During this last home visit, bedtime was a breeze and I’m very grateful for all of us.
I saw zero agitation over the weekend when he was here. He accepted all my redirections without any aggression, verbal outbursts or push back. We were concerned that he may protest going back after the visit was over, being that this was his first trip home after the postponed move, but he didn’t. When it was time to return, he said, “two days.” For some reason, that is the time that imprinted into his brain after we decided to push pause on his move back. I think it’s because the day I told him that we would not be bringing him home, was two days away from his scheduled move back. “No,” I said, “five days Jude. Daddy will pick you up from school on Friday if you have a good week.” He said, “ok” and got into the truck without hesitation. It’s a knife in my heart to disappoint him, but I know that he can’t call the shots. We love him deeply and are forever committed to make decisions that protect him, even if they kill us emotionally.
The comments in response to our decision hurt. I try not to let them affect me, but I’ve accepted my inability to do that.
“How can you put that kind of pressure on him? One behavior, and the whole thing is called off?”
The truth is, I don’t know if it’s right for us to put that kind of pressure on him. Can he control himself? Does he, or will he ever, understand consequences? This is a polarizing topic in the autism community and I’m not dying to know what everyone thinks about it. From day one, I’ve been parenting this precious son of mine blindfolded, grasping through the dark as I bump and stumble along. I will never claim to be an expert on him, much less autism itself. But today, right now, the reward of coming home for good behavior seems to be resonating with him. Working? I don’t know. Resonating? Yes. I’ll take any crumbs I get on this journey and do what I can with them. But again,
I dare not claim to be an expert or impose my successes with my son upon you and your autism experiences. I wish everyone would allow me the same grace, but I can’t enforce that.
I asked someone on our medical team if reducing the clozapine was a mistake, she responded that for Jude, clozapine isn’t poison, it’s a miracle drug. That sent a rush of peaceful reassurance through my mind and hushed the fear of what its affects could possibly have on my son’s body long term. Today is all I have. I must make his life livable today and entrust the number of Jude’s days to God.
My heart goes out to all of you struggling with the same decisions. You’re not alone and I hope this space has given you a little relief knowing that. Let the outsiders hate, but remember that the minority who are actually living this, get you. Life lessons don’t always have to be learned from personal experience. If we exert a little humility and a listening ear, we might not only learn something new, but find that we were wrong about things we once felt so certain. I pray that our harsh critics slow down enough to exit the highway of absolutism and get on the road of humility that leads to understanding.
Special Needs Motherhood 
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