Friday, December 1, 2017

Holiday Brain - Living With FASD

The Thanksgiving-Christmas season is not for the faint of heart when your child has FASD. Throw in a birthday just a few days after Christmas and the drama only intensifies.

Yesterday Joseph's brain literally went AWOL. He couldn't function. It was almost like having an 18 month old again but this toddler weighs 80 plus pounds, can run, call names, fling toys with enough force to hurt someone (usually mom) and to make it even scarier, the general public assumes that he is perfectly "normal" and anything he says is taken at face value. Sometimes I wish I could hang a sign around his neck explaining his diagnosis and how it affects him.

Perserveration is a symptom of FASD and currently gifts are Josephs main focus. He loves looking through catalogs which is nice because they keep him happy and occupied for a long time. The downside is that he see's all kinds of things he wants and he has to tell me all about them. Then he keeps asking, "What are you going to get me for Christmas? If you don't get me _________ you can buy it for my birthday. How many more days until my birthday?" And on and on until I tell him, "You may look at the catalog but if you keep begging, I will put it away." He agree's but not a minute later he is back at it. I remind him that there is to be no begging and he sigh's and says, "Sorry mom, I forgot. I will be quiet now." Guess what happens 30 seconds later? Yes, he is back to telling me what he wants. Sometimes I remove the catalog, other times I know he cannot remember from one moment to the next, so I just close my ears.

He eyeballs every box and package that comes in the mail. Asks me where I went shopping and reminds me of everything said store may carry. December is spent thinking of gifts. I guess I can just be thankful that Christmas and his birthday are within the same week. We have one solid month of dysregulation versus two months of it.

Yesterday was particularly rough for him. I have never seen him so spaced. His brain refused to focus for more than a few seconds at a time, not nearly long enough to figure out one math problem, much less do a test like he was supposed to. After an hour of trying different methods to get his brain to function, during which he ran away, screamed at me and slammed doors, I told him he doesn't have to do school work today. Guess what happened? He had a full on meltdown. Trashing his room, throwing things and screaming even louder. He finally fell on his bed, sobbing his heart out. I hate hearing him cry like that because I know it is coming from a place of deep pain and I can't make it better for him. Eventually he was able to play with his Lego's but beyond that he couldn't follow even simple commands.

I know what he needs, a smaller world, but how to do that is the problem because the poor boy already has such a limited existence. If anyone out there has tips on making a small world smaller, I am all ears. He wants to do things, he wants to be helpful but he is unable to realize his limitations which means mom gets the blame. He tells me time and again, "You just want me to have a boring life, you don't let me do anything fun!" I wish I could help him understand that we are helping him enjoy life by providing boundaries but he doesn't have the ability to understand such abstract concepts. 

Last night he had another meltdown just before bedtime. He was doing a chore and it was not going well so I told him to put his pj's on. He pounded and kicked his bedroom walls while screaming how unfair life is. I was thinking of calling Dean to come in and deal with him when he calmed down and crawled into bed. I was sweeping the floor when I heard a little voice calling, "Mom, I want to tell you something." I opened his door and he said, "Sorry I screamed at you, tomorrow will be a better day." I assured him I loved him and all was well. Sadly FASD is getting in the way again and today isn't much better than yesterday. Oh well, it's December so we will hunker down until January!

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