Putting a feeling into words; Anticipatory Trauma.

[Disclaimer: The rules around things like this on social media focuses on ensuring that I respect my child’s privacy which I’ll do. I’m always worried I’ll offend my Autistic friends & or my biggest fear, be called abelist. Every time I write something like this, I need to make clear that this is about me & my life. These are my lived experiences of having a neurodiverse child & not diminishing or minimising her lived experiences. I truly hope this narrative doesn’t leave me hurting anyone or insulting the very people I vehemently vouch for & advocate for].

When reflecting upon my experiences at school, they’re through the lens of an adult. My memories are dwindling from the earlier years only recalling milestone events & snippets of situations. High school memories, although clearer, are still difficult to recall in detail & perhaps with accuracy as I’ve layered on other people’s recollections & nearly 30 years of experiences & personal growth.

I wasn’t in the popular group, but not in the nerd group either. I was in the ‘middle group’ where looks were important, academic prowess less so, but all intelligent in our own ways. I can remember my classmates (if not by memory, certainly by face), most of their names & can even feel how I thought about them at the time. How I labelled them, how I treated them, who I was intimidated by, who I feared, who was weird, who had the worst acne, breath or body odour, who I had to tirelessly impress, keep happy or win over to ensure we could still be friends, those who I ‘was in a shit with’, those that ‘were in a shit with me’ & those, for whatever reason who just never liked me. It’s not just the memories, it’s the feelings that accompany them & the feelings are not all warm & fuzzy.

When we enrol our kids in school, these memories & feelings are triggered. All we want is for our kids to be happy (& healthy of course) & enjoy their time at school, form close friendships & relationships, & create lasting memories.

We don’t wear rose coloured glasses. We know there will be fights, arguments, falling outs, teasing & possibly bullying, but it’s these situations & occurrences that are used to learn from, grow from & strengthen with. There will be pain, sadness, loss & broken heart, but there will also be so many positive experiences. The most reassuring thing is that our kids will be supported by schools (that know & do better than they did ‘back in my day’), parents (that know & do better than they did ‘back in my day’) & by a community that collectively know & do better.

(Could we pretend kids are learning on-site at the moment?)

I drop her off at school with the hopes that she will gain life skills, form connections & also get an education.

I drop her off knowing what lies ahead as I have the experience & insight of this.

I have no control over any of it like I did back then. Because it’s not me.

The hardest part of this is that my child is not like me.

I drop her off feeling as though I’m feeding her to the sharks.

It’s trauma feeding into the fear.

That is how I feel every day. I’m fearful. And that fear is awareness because I’m acutely aware of being on the other side & knowing what kids (& parents too) say & think about kids like mine. And this cuts deep.

It’s anticipatory trauma. It’s the anticipation of a repeat or reflection of a traumatic experience, the impending doom surrounding planned events that we know have, or will cause harm.

When a parent has their child diagnosed as high-masking Autistic, you’re not prepped or consulted over the times your feelings, ideas, thoughts & emotions will be challenged. I can tell you however that this is a daily occurrence. Milestones, celebrations or festivals not celebrated because it’s too difficult for our children to emotionally manage or because of the sensory consideration, the widening gap between your child & their peers in terms of their social & emotional development & their executive functioning.

These experiences also are uniquely individual so arguably the consultation & prepping can’t really be done effectively.

But, now, in high school, every day I drop her off at school, (yes I know, in the olden days or between lockdowns) & I’m triggered, torn & sad, because I know exactly what difficulties & challenges lie ahead of her because I’ve been there & done that (except with the addition of social media making things so much harder).

My daughter is going to have to face more than I ever did & I can’t be there with her & for her. I’m not able to use my knowledge & experience to support her & have to hope that someone at school will do this for her. (And for me too!)

‘I know what I used to think of the weird, odd & quirky kids back then & how, although I didn’t overtly exclude them, I also didn’t include them…. but now I’m sitting on the outside looking in. I’m the parent dropping off my ‘weird, odd & quirky kid’ & sending them to school knowing that not everyone is kind, that she’ll be labelled, judged, teased & whatever else’.

Literally Ausome

I know what I used to think of the weird, odd & quirky kids back then & how, although I didn’t overtly avoid or exclude them, I also didn’t include them. I used to think they were ok being alone because they seemed to enjoy their own company & seemed ok.

But now, I’m sitting on the outside looking in. I’m also the one who’s got the ‘weird, odd or quirky kid’ & sending them to school every day knowing that not everyone is kind, that she’ll be labelled, judged, teased & whatever else. I know that she’s not happy in her own company…. she’s lonely. She wants to have, make & maintain friendships but struggles with this. In all the days of lockdown this year (& school holidays) she’s not had any messages; not one text, not one What’s Apps, no Messenger Kids chat/call, Facetime or Skype. For someone as social as me; this breaks my heart.

There are so many things about having a neurodiverse child that’s challenging for us parents (of course them too, but a reminder this is about me), but this is the most challenging thing I do every day that I don’t acknowledge…. simply because it’s just too fucking painful.

I can support my daughter with social skills, books, with social/visual stories & with a Psych that can assist her with her difficulties & challenges, but it’s up to her to use them, to read them & apply them. They might not be accessed or used yesterday or today, but there’s always tomorrow & all I can do is let time, maturity, insight & self-awareness play their part too. It would also be great if neurotypical children were granted social skills groups to learn how to include their Autistic or Neurodiverse friend(s), but I’ll leave that for another day!

My silver lining, which is as painful as the events or situations themselves, is to hope that any teasing or exclusion directed towards her is not understood. There might be some good that comes from not recognising body language, gestures, tone of voice, facial expressions, sarcasm & ‘literally’ misunderstanding what’s being said or done. For example, when she tells me that someone at school called her a DJ, I suggested it was because she wears her noise reduction headphones & cool DJs wear similar ones, to which she responded with, ‘but I didn’t have any music with me’, to which I said, ‘well that was silly of them’!

The thing is, she might not understand these scenarios, but I know she can sense them. She can in some way feel they’re doing something mean or wrong, which in my opinion, is so much worse than understanding what happened because feelings are harder to describe, explain, work through, process &, in her case, react to. (This is also linked to Alexithymia here: https://www.facebook.com/literallyausome/posts/1427383387633830). These feelings are expressed at home & not through words, but through behaviour & conduct. We experience the before school anxiety & the after-effects of school.

I know I started educating & advocating for my kids, myself & so many others who have the same experiences parenting & raising neurodiverse kids. I want to make the world more aware, more understanding & more accessible for my kids & others like them. I wonder, based on my daily triggers, if perhaps I’m overcompensating in some way because with what I do, because I can control it. I literally have no control over & can’t control anything that happens to my kids when they’re not at home (not that I can control them or what they do here either, but you get what I mean).

(Processing this as I write…. It’s not overcompensating, it’s up-skilling. I need to know what I’m doing & how best to support my kids).

As you were.
I feel as though I’m living with ‘anticipatory trauma’ as I’m anticipating how hard things will be for my daughter as she progresses through high school, anticipating the challenges she’ll have to face, the ridicule she’s likely to endure & the feelings she’ll need to process as the situations are often misunderstood.

It might also well be ‘vicarious trauma’ associated with managing & supporting my daughter with her traumatic lived experience, whether it be now or any time in the future.

There are so many times in life where previous experiences support future actions & can prepare you for what lies ahead.

This is literally not one of them.