Tuesday, September 27, 2016

FASD Is Permanent

Several times in the recent past I have been asked when Joseph will get better. My goal is to explain how FASD affects him as well as helping people understand that FASD is permanent.

 Joseph's prefrontal cortex has sustained the most damage. This part of the brain is responsible for problem solving, decision making, memory and judgement among many other things. One article aptly refers to this part of the brain as the control panel. 

Joseph needs us to love him, encourage him and protect him, the same things every child needs. However we sometimes need to take our level of protection to a deeper level, we have to protect him from himself. At this point Joseph would not intentionally hurt himself but he might unintentionally. Just the other day I found him with his belt around his neck, he even had it buckled! He was pretending to be a dog and his belt was his collar. I removed the belt and explained why it was dangerous. Since his memory was also affected by alcohol, he promptly forgot what I told him and given the chance might do the same thing tomorrow. That damage will never go away, FASD is permanent but it is not hopeless! 

These are some of the comments we hear from time to time. Sometime's the person is trying to make us feel better, other times they are hoping that he will get better and then there are those who really don't understand. It isn't easy to know when to explain and when to just be quiet and smile. Since September is FASD Awareness Month, I wanted to write at least one post on the topic. When I couldn't come up with any ideas, I decided to forget about it, until I was asked several times in succession, "When will Joseph get better," then I knew I had my topic.

 "By the time he is a teen he will probably catch up to his peers."
No he won't, baring a miracle, that is. For many years to come Joseph will function at half his chronological age. Often when people with FASD reach their mid twenties to thirties they are no longer so far behind their peers but that varies for each person.

"At least he will be able to take care of himself when he is an adult."
    FASD is permanent. Maybe Joseph will be able to care for himself someday, maybe not. It isn't that he wouldn't be able to meet his needs physically, it is more that he wouldn't remember that meat needs to be refrigerated, that you do not invite strangers over for the night or share your whole pay check with a friend only to have to go hungry yourself. 

"Be glad he doesn't have a permanent disability."
  It is permanent. Joseph has what is called organic brain damage. His brain was injured prior to birth. 

"Maybe if you would do x,y,z he would to catch up to his peers faster."
   Supplements, medications and therapy all help those with FASD to reach their greatest potential but nothing will "heal" them.

"He will grow up, just give him time. He matures slower than others, give him more time."
   More time, if only it were that easy! However there is a bit of truth in the "give him more time," approach. Because as I mentioned earlier, when these people their mid twenties they seem to catch up to their peers on some levels.

"I saw how well Joseph interacted with the other children, he is really improving!"
This one is a tough one because on the surface it appears that he is doing better. People with FASD have good days and not so good days. If you happen to see Joseph on one of his good days, you may be inclined to think he is doing better but sadly, the good days don't last.


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