Monday, April 10, 2017

Complex Disability - Life With FASD

Jeff Noble shared this quote on his FB page:

 "FASD is devastating. What disability results in sufferers being good at small talk, but without substance? Then add a kind heart but a violent temper, complex needs, but no insight, a small frame with big expectations and perhaps worst of all, a damaged mind but a beautiful face."- Elizabeth Russell

This perfectly sums up Joseph except for one thing, "a small frame." Many people with FASD have small stature for various reasons, although there are some like Joseph who do not fit that part of the picture.

"Good at small talk, but without substance," Joseph is excellent at small talk. He can carry on a conversation with anyone. The trouble is, he often has no idea what he is saying, he is simply repeating what he has heard others say. This leads to people expecting him to be as intelligent as he sounds. They don't realize that just because he uses a word doesn't mean he knows what it means. I remember reading somewhere about a child with FASD who was in therapy. His therapist explained that he will not be allowed to go on a family camping trip if he doesn't change his ways. He didn't change and when his therapist asked him why, he admitted that he didn't know what camping was. Which was why he didn't have the incentive to try. The moral of the story is, "make sure your child understands what you are saying." Let me add that this is not necessarily appropriate actions to encourage better behavior for someone with FASD.

"Kind heart but a violent temper." Joseph is very kindhearted. He cares for those smaller and weaker than himself and it isn't unusual for him to be upset when he knows someone it having a hard time. The flip side is his temper for which he has no brakes. Like many with FASD, he tends to cycle through times of calm and times of rage. When it is "rage season," we all hunker down and do our best to wait out the storm.

"Complex needs, but no insight." It took me a bit to figure this one out. FASD is complex, no doubt about that. I think Joseph's lack of insight into situations, is what makes caring for him emotionally so difficult. 

"Damaged mind but a beautiful face." Behind the chubby cheeks and winning smile, is a brain that is severely, permanently damaged. Sometimes I look at Joseph and wonder what his life would be like if only his mom hadn't drank. I admit it takes accepting over and over again. In my bitter moments it is hard to see the bright side but there are always those times when I feel blessed that God saw fit to allow us to parent a child like Joseph.

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