A Timely Reminder About Dysregulation & FASD

Blog Dysregulated.png

By @FASD_Dad

Today wasn’t the best day. And I made it worse. We know our son doesn’t do well with multiple activities in the day. I know that when he starts to become dysregulated we have to do the work to keep things calm, quiet and to make the environment the best it can be to help him regulate himself.

Today, I didn’t do that. Today, when he was getting more and more dysregulated because he didn’t want to go out, I made it worse. I let his stress and tension communicate itself to me, reflected it back at him and made his downward dysregulation spiral worse. So instead of getting down to his level and talking calmly with him; or just backing off and letting the meltdown stop, I did all the wrong things. I told him we had to go. I told him he had to put his shoes on now. I told him we were going to be late to see his friend dancing. I made it SO much worse.

We had flying shoes. We had slamming doors. We had curses and yelling.  We had tensions between Mum and Dad. And I just couldn’t deal with it. My stress became his stress because I didn’t use the techniques we have learned.  The five minutes we needed to get out of the door became 30 minutes, 40 minutes. Eventually, in his room, all alone, the dysregulation and his meltdown slowed and stopped. Stopped enough that we could deflect. Get back on track. Restore some calm to the day, to his mind, to him.

And in the time that followed, we got a reminder. Several people at the big FASD conference happening in Vancouver tweeted this slide from a presentation*

Dysregulation

  • Sensory dysregulation interferes with child’s ability to access and apply strengths on demand
  • BUT FASD = neurologically dysregulated in more than one area of brain function
  • Therefore dependent upon the external environment to provide any regulation, especially under stress
  • “External Brain” at all times and in all settings to ensure safety and success
  • Dysregulation also ensures that behaviour is more reactive than intentional

“The ‘external brain’ needed at all times and in all settings to ensure safety and success” – well, we know that but it didn’t work today. I was the external brain and instead of ensuring safety and success, I had my own little flip out. I couldn’t keep it together. The stresses and strains got to me and I let my son down when he needed me.

His behaviour was indeed reactive, and he was reacting to me projecting stress on to him. His brain, unable to process, got stuck in the moment and I didn’t help him out of it.

This slide was a great reminder. He needs us to be calm and stable, even when he is repeatedly aiming a string of choice vocabulary at us. Even when his shoes are flying. Even when he’s lashing out. He needs us especially then. As the slide points out. As I already knew, and could not act on.

So thanks to @EMcWilliamsHew2 for tweeting the slide. Thanks to the presenters who wrote the slide. It was a good reminder.

I’m not beating myself up too much. We all get tired. We all make mistakes. We all are under stress and have times when our actions and reactions are not what they should be. I did turn it around. I got him to put his shoes on and get in the car to go swimming. He had almost two hours of physical activity and joy in the pool. That’s what he needed to relax himself, to get back to a good place. In the car on the way there, he quietly explained this was what he wanted, that he didn’t want to go and sit and watch dancing – although he would have liked to do dancing. So often, he tells us what he needs in different ways, and sometimes, like today, we don’t hear that.

He did miss his friend dancing, but there’ll be other times. We’ll make sure the day is prepared better next time, and he’s in a place where he can access the dance show, where that’s what he wants to go to.

But, I do have to remember. He needs me when he needs me, not when I’m ready to be needed. That’s my take-away from today. I’ll do better next time.

———-

* The presentation was “Including Sensory Dysregulation in Every Diagnosis of FASD” by L.Scott, L.Elliot, L. Wahabe (PEEL Program in Ontario) at the 7th International Conference on Fetal Alcohol Spectrum Disorder, 3 March 2017

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10 thoughts on “A Timely Reminder About Dysregulation & FASD

  1. How timely is this post. My son living with FASD just fell asleep on the way to hockey. I woke him up and a meltdown ensued. I offered him to not go but needed to come home and be in his room. Having company tonight one of the families has 3 kids. Just had to let the mom know that I don’t think my son will be able to cope with the excitement tonight. Part of me thinks oh he will deal with it and he other part is full on external brain – settings up for success. It so hard to navigate parenting in this world of FASD. Great blog post.

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  2. @FASD_Dad says: thanks for the kind comment. It IS very hard, what we have to do as parents day by day. It sounds like you did what you had to do for your son. Keep on keeping on.

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  3. Your blog reminds me and explains so well how much my son needs me to help him regulate when he dysregulates. I know, like you have with great honesty shared, that too often I don’t manage to do that. I get very upset with myself because I can become dysregulated as well which is a big problem since I was seriously ill with Bacterial Meningitis & Septicaemia. I further traumatised my son at the time of illness when he knew I wasn’t expected to survive the coma, and although I did survive I now have an acquired frontal brain injury. I frequently feel so guilty and hate myself for my parental failings as this was not how it was when I adopted my son as an able single parent.

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    1. @fasd_dad: You have challenges way beyond ours, and your strength shines through in this comment. Don’t hate yourself, pick yourself up and remind yourself of all the good things you do, the times you get it right. Focus on the positive you achieve 🙂

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  4. Thank you so much. I’ve had an awful time handling everything. I actually asked myself tonight, why am I so angry all the time? I’m constantly battling my side, not thinking about why his side his so important to him. I need to restart my parenting chip.

    Big hugs to you both.

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  5. Sitting at the park thinking of how I have pushed my little man to meet my agenda this weekend. Predictable outcome of meltdown and frustration. Trying to salvage some joy by giving him some quiet space at the park. It is SO hard to be always weighing his needs against my wants. Helps to know I am not alone. Thanks everyone for sharing.

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  6. We are just beginning to travel down this road for FASD with our three years old adoptive son…We have had him since he was four months old. But his out bursts and aggression now is overwhelming for me. We just recently got a referral for further evaluation regarding FASD. I don’t know where to begin.

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    1. From @FASD_Dad – Hi there, this is a hard journey and we all need support along the way. There are closed facebook groups you can join if you are on FB – maybe you already know about them – like FASD: Flying With Broken Wings (which includes a lot of adults with FASD) and Shifting the Paradigm: towards a neuro-behavioral approach to FASD. This last is based around the work of Diane Malbin and her book Trying Differently Not Harder. We’ve found it very useful indeed in working with our son. In the UK we are actively involved with the FASD UK Facebook support group. For our personal support, we also created our own secret Facebook group for a small number of family and friends to help them understand how hard it is to raise a child with FASD, and to give them a place to learn and to support us. Maybe that is something that would work for you. Thanks for reading the blog, we really hope it helps people.

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