Tuesday, January 16, 2018

When People Are The Cause Of Dysregulation -Living With FASD

Socializing is one of Joseph's biggest struggles. Having no self regulation and the ability to go from zero to one hundred in a few seconds time certainly doesn't help. No regulation means he doesn't have many chances to practice socializing, since people are his main cause of dysregulation. 

At ten years of age, he is very well protected since Dean or I are always by his side unless we leave him with a babysitter whom we totally trust to keep him safe. However, I get little glimpses of what his future could be like if/when the time comes when it becomes more difficult to keep these safety nets in place. As of now, when someone asks him to do something or if he wants something, he always looks to Dean or I for confirmation before accepting. But what about the time's when he doesn't have us there to guide him? This was one of the reasons he didn't do well in school. He was constantly getting into trouble since he didn't have anyone to look to when he had to make a decision. To make matters worse, the other boys knew when they had taken something far enough, not Joseph, he kept on and reaped the consequences while his buddies usually got away with it.

The normal social cues that would clue you and I in when something doesn't feel quite right, totally goes over Joseph's head. He has no sense of what is appropriate or inappropriate leading to some embarrassing moments for his parents!

Recently Joseph had an appointment that nearly led to disaster. I can't blame him either because I was the one who should have stepped in and stopped the interaction. It happened at his dreaded psych appointment, the one where people were spouting off right n left. Joseph was already on edge because he despises this appointment as much as I do. Anyway, a woman and her son were sitting nearby and when 20 minutes of aimless waiting had slowly passed, she pulled a fidget spinner out of her sons backpack and handed it to Joseph. He of course looked to me to see if it was okay, and I nodded. I should have stopped the interaction right there but me and my insecurity over, "what will people think if I make my son sit there with nothing to do," got the best of me. Joseph has begged for a fidget spinner but for many reasons he isn't safe with one. He tried to get it spinning and this lady was encouraging and loudly cheering him along, causing intense dysregulation. Then she started asking him questions, simple one's which made his, "I am no longer feeling safe so I will just give a huge smile," big, cheesy grin to appear. I was praying that they would call his name when the lady patted the seat beside her and told Joseph to come sit between her and her son who was busy playing games on one of his many electronic gadgets. Joseph immediately jumped up and I put my hand on his arm and said, "You need to keep it under control, or you will come sit beside me again." He did surprisingly well considering he has no media time at home, he was in a situation where he was ill at ease and he was waiting for a dreaded appointment. By this time I was thoroughly berating myself for not stopping this in the beginning. I knew there was no one to blame but myself, although deep inside I thought the woman should have known better than interacting with another child in such an office! I could sense his anxiety rising, although on the outside it looked like he was having fun. This is what makes it hard for people to comprehend why we go out of our way to keep his world small and low key. By the time they called Joseph's name, he was thoroughly dysregulated and I was a nervous wreck. 

I would love to hear how you teach your children with FASD to self regulate. How do you manage situations when in public? My son typically doesn't learn from experience as is common for those with FASD, so giving him more freedom so he learns social skills doesn't feel right. We have tried teaching him using charts with facial expressions but he couldn't identify even basic faces such as sad, angry or scared. 

We have also been trying to teach him coping skills with a minimum of success. Recently I watched a video on youtube that explained how hugging oneself by crossing your arms, putting your hands on your upper arm then rubbing, patting your arm can help you feel grounded as well as knowing where you are in space. This has helped Kiana a great deal but it only makes Joseph angry because he says, "You are giving me consequences when I didn't do anything wrong!" As usual, explaining that we are trying to help him feel better, does little good.

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