Always On – Hypervigilance and FASD

Blog_AlwaysOn_Hypervigilance

By SB_FASD

Hypervigilance is a term that keeps cropping up lately.

I first used it in consciously last month in a meeting with two therapists where my husband and I were discussing our son when he wasn’t present. I was relaying a story about going through charity shops in the town with our little one with FASD. I was talking about how I feel the need to be hypervigilant to anticipate how to deflect the negatives that might come his way – perhaps due to how he is dressed or the way he might be acting. It’s like trying to extend a big protective bubble around my son as he walks through the world, worried that it could pop at any moment.

Mirriam-Webster defines hypervigilance as “the state of being highly or abnormally alert to potential danger or threat.” Yep. That’s me.  It can be linked to post-traumatic stress disorders but that is not what affects me. I just live nearly all of every day in a super alert state, listening, anticipating, waiting, trying to deflect a negative outcome or some situation from spiralling into a fully heightened scene. An article, “Hypervigilance in Autism Parents” struck home for many of us raising children with FASD.

I do not relax. Or very rarely. I realised THIS is why I wake up and watch mindless TV in the middle of the night – it’s the only time at home when I can relax. Everyone is asleep. There is no chance of things going from zero to 100 at 3.00 am.

I am not writing this to complain. It makes me empathise. This feeling that I have is nothing compared to what my son experiences. Yes, I am constantly anticipating, analysing, assessing where things are and where they are going – living on edge of a possible meltdown coming from who-knows-what stimuli next. It is exhausting. It’s not a very nice way to be. How I would like to kick back my heels and sit in the garden with a good book and just relax. This is not going to happen. I’ll survive.

But my 13-year old son, he lives in this sort of state multiplied by 100 or 1,000 times.  His anxieties are through the roof. At different times someone’s breath on a strawberry panics him. A buzzing fly or a pan on the stove sizzling too loudly or a low-petrol reading in the car or whatever it is at that moment – things I do not even notice – can raise his internal alarms so high that he cannot contain himself, let alone explain his fears or his worries. His behaviours escalate and he loses all impulse control. It can be quick and forceful and things can be smashed in the process.

He has been getting some counselling lately that is helping. He’s working with therapists who help him have the words and awareness to identify how he is feeling, to spot when his anxieties are increasing, to put in place strategies for each of those different stages. Where once he only knew two states of being – happy or angry – now he has been learnings there are steps along the way and things he can do (and that we can all do) to help him move down that ladder.

It’s not rocket science – and it is absurd that these sorts of tools are not made more available early on when a child starts showing these sorts of problems. And it is really tragic that many if not most families affected by FASD are not able to access these kind of therapeutic settings that can really change things around.

This week, I have been learning that the therapies help us as much as they help our son by giving us all a common language.

We’ve had a bit of a rocky road this week. Our son’s school went off timetable for a special “Arts Week.” They are doing absolutely amazing things. But it pushed our guy to the edge, if not over. We had a car ride to an evening event at the school where he was starting to become dangerous – the first journey like this in a very long time. In between cursing and bad language and taking off his seat belt and throwing things, he was telling us “I can’t handle it.” “I’m too tired.” “I just want to go home.” “I want to play with slime, that will help me.” In the past we would have kept going, pushing him too far. This night, we honoured him – we listened to what he was saying. We turned around. We went home. He played with slime. He danced in a body sock. We didn’t have a meltdown.

I felt oddly good.

What’s the point of encouraging him to use his words to tell us how he feels if we don’t act on that and show him that his opinion and feelings matter? He identified his feelings, stated his needs, came up with a solution for how to self-regulate. Progress!

The next night, again after a day off their normal schedule, our son was becoming dysregulated at home. I was frustrated, tired, alarmed that things were starting to fly – always worried about breakage, but also fighting that sense of disappointment and fear for the future that bubbles up when I am feeling weaker than usual.  I lost it. I heard myself saying, probably too loudly, “That’s enough! I am stressed. If I had a scale of 0-6 like you do, I would be a 7 right now. I am going to explode. I need quiet. We are both going to sit here, quietly. Don’t say anything. Just sit!”  And you know what? He did. I ignored what others might have interpreted as smirks, because I could see these facial expressions were signs he was nervous and trying to register this unexpected new information. I sat there on his bed with him without either of us saying a word for about 30 minutes – he was on his phone, I was on my computer. Every once in a while, he’d move his leg a bit closer to mine for a scratch. And the scene that had been horrible became calm.

I sat there thinking about what had been staring me in the face – we need to use these tools too for our own stress levels. To build a common language with our son. Why should he be the only one in the family with a stress chart with identified strategies for how to cope? He needs a guidebook for how to help us as well. He is the one with trouble reading others – of course he needs a road map too. I can’t assume he understands instinctively what I am feeling.

I have been learning more about theory of mind. It’s tied up with developmental stages – when a person begins to understand that other people experience the world differently than they do. Some people with various disabilities struggle with this.

I remember our son on the phone when he was smaller, holding up something that my husband couldn’t see on the other end of the audio call – “Here Dad, it’s this one.” One of my favourites was “No Mummy, not there – scratch where it’s itchy.”  He didn’t get it that I couldn’t know where the itch was. Lately I have been increasingly direct with him, saying things others might think are “obvious”. “I am tired and I am going to bed now. Please don’t ask me again tonight for another snack.” Telling him what I am feeling and therefore what I expect from him is working.

I have been taking cues from adults with FASD who find help in mindfulness. It helps me with the hypervigilance to recognise that I have the power in a moment– any moment – to find something to focus on, if only for a short time, to help me ground myself, to slow my breathing. I hope our son will eventually learn more about these techniques. But in the meantime, I can invite him to come sit by the dog and feel how soft her ears are. I can comment on how soft the breeze feels on my face. Or point out how very blue the sky looks. Building blocks. Little moments lead to big breakthroughs. Step by step. I believe we have to see progress and celebrate it, no matter how small.

As I am realising I am in a hypervigilant state most of the time, I am using this understanding to help me better understand my son. I am trying to use the tools we are learning to help him understand not just himself but others too.  But I guess I need to do more to understand me too and what I need. So, yes, the word of the week is “hypervigilance.”

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Some additional resources:

Emotional thermometers and other printable resources from here (there are lots of interesting resources on this site):  http://do2learn.com/…/SocialSkil…/Stress/StressTriggers.html

This ‘brain house’ model is also helpful to teach children about the ‘upstairs brain’ and the ‘downstairs brain’: https://www.heysigmund.com/how-to-teach-kids-about-the-bra…/

 

 

 

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