To understand how I have experience of PTSD there is a preceding blog for #SB4MH, Child Abuse-a parent’s perspective – but perhaps the title gives it away.
My home, containing two adults and three children, is full of acronyms: ASC (Autism) 4/5, ADHD 3/5, DCD 1/5, PTSD/cPTSD ?4/5. There are also more creative diagnoses including Adjustment disorder, social anxiety, dyslexia, hyper mobility… we read like a diagnostic manual. None of them are easy to explain in a casual conversation when you leap out of the car in a disabled space with two working legs, but they are all disabling in their own way.
These diagnoses can be useful, as they give professionals a road map for communication and helps us reach greater self understanding. They can also be problematic, limiting others’ view of our potential outcomes. It can be exhausting on a personal level to be constantly monitoring which behaviours of ourselves or our children might be affected by which diagnosis. What you challenge, where to support, what to discount…. everything need analysis.
The reason PTSD has a question mark is because it has been difficult persuading the appropriate professionals that Mr Hunt and myself need a diagnosis. It is established we are traumatised and in my case that it is complex, but ongoing properly funded support and treatment relies on a diagnosis. This in turn relies on getting to an appropriate professional who can make the diagnosis, and the gatekeepers to these seem to think we are managing and therefore there is no point. We would question what managing looks like.
I see a psychologist, who has supported our family since 2017. Most of what we do is talking therapy. With my eldest, who has a formal diagnosis, she has tried EMDR, but they were not ready to access it. I’ve tried it also with her, but I struggle to visualize what might happen, probably because of my social imagination issues to do with my autism. She is very supportive of just how battered myself and Mr Hunt are, and also how many complex things from my growing years affect how we have developed different handling of the situation.
There is a quote from Black Beauty which I can’t lay may hands on right now. A passage about selling horses. The price relied on the height of the horse, so to make sure a horse couldn’t be measured properly, unscrupulous dealers would prick their whithers repeatedly, so when the innocuous measuring stick was offered up, they would dance away in fear.
That is pretty much how I feel. Innocuous things can trigger me. And different innocuous things trigger all of the other members of my house, bar the six year old, who has grown up with us all jumping at irrational shadows.
Complex PTSD comes from repeated trauma, often from someone in a position of power or responsibility, commonly a parent but also teachers and peers with whom you desire to build relationships. There has been some discussion between my psychologist and myself as to the links between autism and PTSD of this type. Constantly failing in social or educational situations leaves you battered. Then failures to successfully enter the job market as your condition is not accommodated. When new things hit you, you already are receptive to the trauma rather than resilient to it. The poor emotional and physical learnt responses kick in, even for individual events that for a resilient individual would hardly register.
Feeling isolated and cut off from relationships, as though no one understands you, are symptoms of PTSD, but also potentially symptoms or descriptive of autism. Disassociation is for some people on the spectrum part of their normal. When this is the case, diagnosing PTSD as a separate condition can be difficult.
The main symptom we all share in our household is hyper-vigilance. Being alert all the time and the utter exhaustion that comes with it that makes sleep feel like defeat. Sleep is guilt-inducing. It is rare for any of us to get more than 6 hours sleep… and because the children are exhausted sooner, those six hours for them might be 8pm till 2 and for us might not start till later. That means our sleep is broken by own our insomnia, our childrens’ insomnia and nightmares, intrusive thoughts and each other. We take it in turns to try to catch up when we feel able to sleep, but fit this round work and parenting.
Hyper-vigilance isn’t just being on edge all the time looking for potential abusers grooming their way into our lives.
It is starting fights with shadows about things with only tenuous links to the subject. The PHSE curriculum in school. People who rely on a DBS (criminal record) check to show someone is suitable to work with children. Fights I don’t have the energy for. Some of them justified. Maybe. I can’t tell anymore.
It is not being able to let go of the levels of supervision we were required to have for years, because if it were needed then (it wasn’t) then when would you remove a safeguard now? The idea that because a social worker who has spent 30 minutes with us thinks we are safe with one care worker working alone because that’s all they will pay for, doesn’t mean we can ever settle for that again.
For my eldest child, there are nightmares that have us sitting up sipping tea at 3am and defending their in school exhaustion over aggressively. The words “you just don’t understand” could be true, or they could be the isolation of PTSD. His concentration and attention are shot to pieces. Is it the exhaustion, the PTSD, autism or inattentive ADHD? Does it matter?Flashbacks that leave him reeling and take him by surprise when his mind wanders in class.
For my middle child it is an inability to trust anyone other than me. A need to press against me, sleep with me. I can’t count the nights I lie awake holding him sleeping in my arms.
It has been decided therapy rather than medication is best, but at the moment no-one is paying for them to access anything and nothing is available through the local NHS commissioned services. At the moment that means they are on their own going through it, and we are on our own supporting them. Maybe that is ok? Maybe there is nothing practical we can do beyond loving them?
Mr Hunt is locked down. Getting on with everything and unable to relax unless he is on a boat away from us all. I want to help, but I don’t know how. He has moments when he grinds to a halt and other symptoms I’m going to let him keep private. But there is no doubt he is in trouble.
I have panic attacks when I have to deal with the professionals involved in organizing the children’s care and moments of dissociation so strong the world turns 2-d, like I’ve stepped into a cartoon. Sometimes I can’t leave my bedroom, let alone the house. I do take medication, and it improves things enough to let me keep going.
The children are improving. The nightmares are coming less frequently. The sleep was poor before the PTSD and now they generally stay awake later and sleep more in line with Mr Hunt and myself. Pity we still have an 8pm till 4am six year old.
We complained that we were unable to get support. The government ombudsman awarded us £250 for grief counselling. That paid for one hour and 40 mins of time with a general counselor. Thank heavens for private insurance through Mr Hunt’s employer, as the money stretched much further as co-pay and this has let us keep the psychologist who already knew us and is specifically trained and experienced in autism and PTSD.
Getting better is the dream. Getting there is an uncertain road.