I’m planning on writing articles about the different steps in our journey, up until the point we are currently at, but today I want to talk about trauma echoes.
Though, before I tell you about that, I need to give you some background information on what happened in my son’s last school, in order to explain trauma echoes properly.
Before Peter (my son) started school, I fought like a Honey Badger to get him a diagnosis (Autistic with Global Development Delay) and then for an EHCP, which was completed just in time for the Specialist Panel to meet and assign specialist provisions for school starters (more on this in a later article).
After much fighting, many meetings and emails, MPs and a Director of Learning being involved, we were assigned a place in an Autistic Resource Base at a local school (not our choice, but the only specialist provision that they were prepared to allow us).
Now, the base itself is great for Autistic kids. The teacher is caring, lovely, and understanding, and the base is an oasis for Autistic kids within a mainstream school.
However; Peter is not just Autistic. He is PDA (Pathological Demand Avoidance). Most things that help Autistics to thrive (routine, clear instructions, etc.) are what have a negative impact on PDA kids.
He started in the base and seemed to enjoy it at first, but grew increasingly stressed, anxious, explosive, and violent at home, to the level that I became physically afraid of him.
I spoke numerous times to his teacher and SENCO (SENCO was, and still is, utterly clueless about autistics and PDA kids) who both maintained this facade that he was coping fine in school; that he had lashed out at other children and staff, refused to participate in activities, and was very controlling, but he was happy and settled.
My gut instinct was screaming that he wasn’t coping and that this sudden and drastic change in my child at home was his way of communicating that he wasn’t coping.
No one listened. No one believed me.
So, I arranged for his Portage worker to check in on him at school. She reported back that he was settled and happy.
I tried to get the Educational Psychologist to go into the base to assess him, but she refused and said that she had been into the base for another child, had glanced over at Peter and that he was fine. She said that his violence and change in behaviour was caused by my ‘mental health issues’ (AKA that I’m PDA Autistic with high levels of anxiety) and that the problem was clearly at home (as that is where the behaviour happened) not the school, and that I should seek ‘help’ for my mental health issues. I walked out of the meeting at this point.
I started to feel like I was losing my mind, as well as my son. No one could see what I saw. No one believed that he was masking at school – which is SO common with Autistic and PDA kids.
Was it all in my head?
Whilst all of this was going on, I had been helping out in the school (an extra pair of hands for swimming lessons, etc.) and I repeatedly saw the TAs from the base grabbing hold of the pupils’ arm to restrain them from moving or doing what they wanted to do.
This made me very uneasy as I knew how Peter would react to being restrained like that. It would cause him intense panic and distress. No autistic child should be restrained like that.
One day, at picking up time, a TA restrained Peter in this manner, in front of me, while he was trying to get to me. I was 2 feet away. He went straight into a meltdown and she still wouldn’t let go. I screamed at her, and she released him.
I put in a formal complaint and went berserk at the school. I was horrified. It intensified my instincts about how he was feeling and it certainly would count towards why he wasn’t coping there.
After much persuasion, I agreed for him to continue for the time being.
Not long after the meeting with the Educational Psychologist, Peter started to get frequently upset at school drop off, which started to happen every day. I refused to force him into the classroom, so I began bringing him home with me more often than he was actually going into the classroom.
We (my husband and I) tried everything that the school suggested to try and encourage him to go into school (which was totally against what my instincts were bellowing).
Then came the Christmas break and Peter’s behaviour slowly returned to his usual happy self, which completely confirmed for me that my instincts were right.
Two days into the January term, he refused school and I pulled the plug.
No more was I going to subject my child to the trauma he was experiencing every day at school. He was crying out to me that he wasn’t coping and I didn’t trust my instincts (because of all of the so called ‘professionals’ telling me that I was wrong) and I let it happen. I effectively stood back whilst my child was being traumatised.
That will haunt me for the rest of my life.
We were then threatened with legal action, I said “Bring it on”
They threatened us with Social Services. I said “Go for it; we have nothing to hide”
The only person I was prepared to listen to was my child.
Then the Pandemic hit and we had some much-needed breathing space to start the Tribunal proceedings to finally get him into a school that he may cope in.
We never reached the Tribunal court date as they called me, stating that our evidence was so overwhelming that they overthrew the LEA immediately and awarded Peter a placement in a school that is 100% child led, that understands PDA (his teacher has researched it thoroughly and has gratefully accepted all of the PDA links that I have sent her, and has passed it all to all of the staff that will work with him). They have a forest school, a swimming pool, a huge soft play room, 3 different sensory rooms for different sensory needs, incredible staff, etc.
Sounds like a wet dream to us SEND parents, right? The pot of gold at the end of a very long and arduous rainbow.
So why, when it was leading up to the 1st settling in session (yesterday) was my anxiety sky high? My stress levels through the roof, a throbbing knot in my stomach, overwhelming feeling of impending doom, all whilst using all of my energy to appear as ‘calm, happy, fun, enthusiastic mummy’ to my son.
We arrived for the 1st session and when his teacher and one of his TAs came to take him to his classroom, he got upset, clung to me, and clearly didn’t want to go. I think I felt my heart physically break. It took some bargaining with a bag of sensory toys, but he followed them in.
As we (my husband and I) sat in the Reception area, I desperately tried to stave off a panic attack; drowning in a sea of anxiety, self-doubt, abject fear, and my instincts deafeningly screaming for me to kick down the doors between Peter and I, to bundle him up in my arms and into the car, and then to drive home, as fast as my car could safely take us.
Every minute hurt.
I was failing him AGAIN
I wasn’t listening to him AGAIN
He was going to be traumatised AGAIN
Every muscle and fibre of my being was tense to the point of splitting open. I couldn’t focus on anything.
The inner protective Mumma Bear was roaring and clawing at my brain.
After what felt like an eternity (45 minutes) it was time to wait with the other parents for the kids to come out at the end of school.
He eventually came out (being carried and cuddled by a TA) and when he came to me, he whimpered quietly, climbed into my arms and clung to my shoulders.
His teacher told us all about what he’d been doing and exploring, saying that he coped fine in the classroom (cue almost PTSD level flashbacks to the dozens of times I was told that in his last school) and showed me photos and a video of him stacking blocks and playing.
By the time we got home, I felt like I had been hit by a train. I was shutdown, fried, and utterly exhausted. Yet, at bedtime, I lay awake with anxiety eating away at me.
It was then that I suddenly twigged that what I was going through was a trauma response. That I had experienced trauma from his last school as well – from him experiencing the trauma. (My trauma does not detract AT ALL from the trauma that he experienced)
Watching him go through what he did; whilst I tried so hard to fight for him and protect him, and failing badly. That I had failed in the primary job that we parents have; to protect our children. That we were so badly failed by the system, the school, and all of the professionals around us. It leaves a deep scar, that I didn’t even realise was there, as I have been so focused on fighting for what Peter needs, that it didn’t occur to me to think of how it all affected me.
SEND parents have such a huge weight thrust upon their shoulders by a broken system, a practically non-existent Children’s Mental Health Service, and a Government who doesn’t give a shit about our kids. So, we have to fight and fight and fight, every step of the way; for every ounce of support that our kids need.
I think we spend so much time, energy, and focus on fighting, that we don’t stop and look at what affect it is having on us. When our children are traumatised by school, we can be traumatised by the experience as well.
When we went to the new school yesterday, I think that both Peter and I were hit with a Trauma Echo; an instinctual, defensive, and panicked response to re-entering a school environment – regardless how incredible and perfect it is.
It’s like a wave of panic that we would experience the trauma all over again. That there is no way that this could work out because the Trauma Echo was imprinting the old onto the new. Like intense Déjà vu, or being trapped in a perpetual Groundhog Day.
It’s crippling. If it wasn’t for my husband being there yesterday, I would have pulled the plug there and then, to protect him from what my brain was telling me was a certainty; that he wouldn’t cope and would be traumatised all over again. That I wouldn’t be able to protect him. Again.
A Trauma Echo is where, every time you go somewhere that is similar to somewhere where you have experienced trauma, the echo of that trauma convinces you that it will happen again, and will happen in every place that is similar to the place where you experienced the initial trauma.
Trauma echoes are not unique to situations; these can happen in relationships, settings, friendships, families, etc.
Whilst similar to PTSD, I believe that it is not to the same level of intensity or paralysis that PTSD is, as well as not sharing all characteristics, such as lucid flashbacks.
Today we had the 2nd settling in session and he walked in quite quickly with minimal bargaining. When he came out at the end of school, his teacher was beaming; telling me that he had been really smiling and had enjoyed sitting with a TA doing puzzles (which he loves).
But still, I can’t let my guard down. I can’t quieten that voice that is telling me that this experience will echo the last. But I am trying. I am listening to my child; and ONLY my child.
I won’t make the same mistakes again.