Thursday, September 28, 2017

If You Loved Me You Would Let Me Do What I Want! - Life With FASD

With Fetal Alcohol, the difference between what they know and what they can do is the disability. They know alot, but because of deficits in their executive functioning it's hard to put thoughts into action. - Jeff Noble

This is true for Joseph in many area's, except for the, "I want to build something," area. He knows what he wants to build, he knows how he wants to build it and he can describe in great detail how he would do it. The problem is his idea's won't work because he is missing key points.

He wants to build a go cart. In his mind all he needs is wheels, a seat and the pedals from his bike. He would hammer it all together and he would have an awesome go cart. Except it isn't quite that simple, but we can't tell him that because in his mind it will work. So we have a meltdown because, "You are just being mean!" 

We have discussed helping him build a go cart, but there are a few problems. For one, he wouldn't be safe with one because steering, speed and pedaling require's more brain power than he can afford at one time. Two, he isn't safe with tools. He can use a hammer but in his mind if you let him use one once, he has free reign to use one whenever he wants. Trust me, Joseph with a hammer is asking for destruction! Don't ask how I know. Three: anything Dean helps him make will not turn out how he envisions which will bring on another meltdown.

Joseph wanted to play with his old bike so Dean left him take it to his play area (a small clearing in the woods where I can see him from my kitchen window). Our hope was that this would fill his intense desire to build something. He took the chain on and off and pretended the bike was his plow. That was fine and kept him occupied for a few weeks, until he decided to take it apart. He got a piece of metal off the bike and bent it into a "knife" and was shaving Kobi with it. I took it, much to his dismay and frustration. Next he took the seat off, ripped it apart and used a piece of wire he found inside to make a tool. Another meltdown because I said he may not have wire as it is too dangerous.

This goes on day after day. Joseph isn't safe with anything metal, sharp or heavy (think of an 18 month old) and he is determined to find things to make his own tools since Dean won't let him use his. 

Yesterday he screamed and raged because he wants to build something "real" with dad's tools. I explained that Kiana doesn't use electric tools like my mixer or blender either, but of course he wasn't processing anything I said. "I feel like leaving here!" He yelled, Dean calmly replied, "There is the door." Sometimes giving him permission to leave is enough to deter him. Rather than leave, he stood there and screamed. Eventually Dean put him to bed where he thrashed, kicked and threw things until he ran out of steam. After awhile he came to me for a hug and asked, "What is wrong with me, my eyes are all red?" I told him that is what happens when he cries a lot. He hugged me and bounced off to bed, but later I heard him sobbing again. Poor boy, we don't know how to help him understand that he is only 9 and not physically able to do all the things he dreams up and besides most of his ideas won't work. He is certain we are just being mean and don't like him. "If you liked me you would let me do the things I want!" Is his thought process. Due to his FASD, trying to tell him otherwise is useless.

Today he is outside building a tepee, something that doesn't require tools, thankfully. However I expect another meltdown because he plans to live in it and it is too small for him to even sit inside. 

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