*Trigger warning – This post contains mentions of suicide and mistreatment at the hands of authorities.
Those who follow my blog may of noticed a dramatic decline in the regularity of my posts of late, the truth is I am not well…
That is to say I have been having some worrying symptoms which are being investigated and I am waiting on an appointment with the neurologist as the indications are that it has a neurological cause. In the mean time I am easily fatigued, often in discomfort and suffer from terrible brain fog much of the time so I am concentrating the majority of my energy on my son. Possible diagnoses have been banded about the most likely seemly being Fibromyalgia or Multiple Sclerosis, but equally it could be ME or have a basis in some sort of anxiety. What is a common factor in all of these conditions is one of the triggers being deep emotional stress.
Now I am not a parent who feels hard done by having an autistic/PDA child, no I celebrate him for all he is and he brings me great joy. However to get where I am to day, to have to find my own path with no support (in fact the opposite of support) has caused me more stress and distress than any other life event including divorce and the loss of my first child. I am not saying the process of diagnoses and the school system was worse than the loss of my child just that the amount of stress was greater.
So profound in fact was the stress I suffered that a section of my hair turned grey literally overnight.
The 5 year wait for diagnoses I had never heard of PDA and had no idea how to support my son or why he was hitting out. There was a constant fight to prove that there was an issue at all including trips to schools multiple times a week because my primary age child was self harming and saying he wanted to die. Not only did no one listen, they wrote him off, wrote me off, attacked me, bullied me and threatened me with everything from social services to prosecution. As a result for at least a couple of years I barely slept and suffered from panic attacks (something I had never experienced before).
I can not help but think that these factors have contributed towards whatever it is that is ailing me now, now I have time and space to react to that past trauma, now that I don’t have to spend everyday fighting on behalf of my son.
What’s more I do not feel I am alone in this. I have noticed how many parents in support groups talk about their deteriorating mental and physical health, ME and Fibromyalgia seem comparatively common in parents of autistic, PDA presenting children as is depression and anxiety. I will never forget talking to a lady on a forum one day about how her son had (yet again) been turned away when she had requested an assessment and as I was speaking to her she attempted to take her own life. The worse thing of all is the feeling you have failed your child or that in some way it is all your fault, something professionals all too often promote either directly or indirectly.
I worry now that if I become sicker who will care for my son?
No one else has taken the time to understand him and few professionals have a good understanding of PDA. Respite is virtually non existent in most areas even if they did, so what will become of us? If my son (god forbid and over my dead body) had to go into full time care it would be expensive so I ask myself why do the powers that be treat parents and autistic children in this shoddy, short sighted way? Why do they not put the money into faster diagnoses and better support and services?
When I started off on the route to get my son diagnosed 8 years ago I had a job, a relationship, and good health, ie I was a self supporting person with reasonable prospects.
My child was still autistic then (just not diagnosed) yet with no mental health issues. 5 years later I had no job, no relationship and deteriorating physical and mental health. My son’s mental health had also deteriorated due to lack of appropriate support in education and he is not able to attend school meaning his future earning potential and potential for good mental health as he gets older may be compromised.
With the help of other parents and the PDA society I eventually found a way forward for me and my son but now, likely as a result of what we have been through, we are in a situation where it is possible in the future I will need a carer myself…..
Just on a purely long term financial point of view the system is madness.
So I say to the powers that be, stop taking away our future health and well-being. Please recognise PDA, support our children, listen to our concerns, fund services because in the long run that will be better (and cheaper) for everyone.