It’s been quite some time since my last blog, so long I can’t remember the last time I wrote one to be honest; quite a lot has happened in Reilly’s life, development and this has changed the dynamics of the house somewhat and had a profound effect on us all as a family.
The first 6 months of the year seemed to pass without too much incident in the grand scheme of things from Reilly’s point of view (I think), our boy rolled with his routine, he settled into his Monday to Friday routine of going in his school transport without too much issue, developed academically very well, he’s by all accounts a helpful, keen student even taking it on himself to collect the class register and participate in running 1 mile a day with few of his class mates and his teacher.
After school in the lighter nights Reilly is keen on playing out in the street, going swimming, going to Air box trampoline park, the Cinema (we tried numerous times but it’s just too overwhelming for him and he is off before the movie starts), Weetslade country park; Fridays are different we always get the bus, same X8, has to be a double decker so he can sit up stairs and get a good vantage point on his journey, straight off the bus at the Haymarket and into Greggs for a sprinkled donought and a bottle of Dr Pepper light then through M and S up the glass lift and depending on his mood its Fenwick’s toy department or HMV or both.
After shopping it’s like clockwork off to Subway for a Bacon sandwich and pop sitting in the front window watching the Buses pulling out of the station.
So good so far right?
During this period of relative stability as I have mentioned in previous posts I have wrote ordinary life goes on, bills have to be paid, work commitments have to be fulfilled, cars will still break down; even in times of really unsettled behaviours unfortunately the same applies.
The first 6 months of 2019 were tough for many reasons personally, like most in modern life we are spinning numerous plates and modern life is stressful enough and parents often neglect self-care; too busy earning money to pay the dreaded bills, keep the car on the road, the roof over the head, rushing between kids activities, probably sounds very familiar to most I would imagine.
I will try to explain the gradual decline that spiralled out of control that with self-care I could of I am sure handled it better, the problem is if you’re in a lifestyle that doesn’t include regular self-care you like me probably won’t see the signs of what is coming and you dig in and think it will pass.
Towards the end of 2018 we lost a dear friend, a really kind soul Glenn who suffered like myself with mental health issues; in January we lost another dear friend Eddie to cancer after a short period of diagnosis, both fine young men were far younger than myself and should have had the world at their feet and deserved to live full and happy lives.
At this point I am seriously considering morality, Reilly’s complexities potentially may or may not need to rely on a support network as he moves into adulthood; we have little in way of support as parents get older, health declines and he’s an energetic bundle as he should be as a young lad. The first thoughts of what happens if it’s me next creep into my head, who will look after him? Who can he rely on? At this point it’s a daily thought and I try to rationalise with myself that’s not going to happen everything will be ok…..
A short period of time later I lost another friend, Gavin the word character could have been invented for him; Gavin was slightly older and like myself a father and like Glenn and Eddie he should have had years life and happiness ahead of him.
Watching the pain, anguish and struggle of bereaved parents is unbearable; I know what they are going through the fights they face and as kind as peoples intentions are bar odd chinks of normality nothing stops the living hell of how final it is. I know because I am a bereaved parent.
The rationalising with myself is now becoming more frequent and my worries are becoming more and more real in my own mind….
Still trying to hold myself together the crushing news comes in a phone call my friend Anthony is in hospital, diagnosis pancreatic cancer; kind, funny, principled, slightly younger than myself and also a father.
Again the first thoughts are this is shit, just wrong, a very fit young man, regular half marathon runner, he should have his life, a long happy life. The battle in my head is now all consuming in fact its lost, well and truly lost at this point. I make an appointment to see my GP and continue as best as I can to function at work and as a parent.
Getting back to Reilly, at this time my head is a mess, I spend time with him and all I can think of is what will become of him, will he need support, will he have a career and who will care for him, protect him and support him? The day before I was at the GP’s I attended a concert at his school and all I could do was cry, not out of pride but fear, real fear for his future.
I left that concert and went home with stomach cramps, never slept and rang in sick the next morning, went to the GP’s unloaded on him and was as honest as I could be, top tip to any men if you don’t be honest you can’t get the correct help. I will be forever grateful to the GP and my friends who recognised the signs and offered unconditional help and support.
The severity of the cramps had been on and off for periods of months and In my lost battle in my thoughts I was terminally ill, the GP took what seemed like a dozen samples and reassured me it was stress related and proscribed a new course of anti-depressants, diazepam and signed me off work for 3 weeks. Work were supportive thankfully, the next few weeks existed of wondering around the house and waiting for the kids to come in to have a sense of purpose.
Fast forward 2 weeks and results day at the GPs, I was physically sick before I went I was that convinced I was seriously ill. The GP got straight to the point and advised me I had neglected my own care in short, was suffering with stress/depression related illness and I was type 2 diabetic undiagnosed for considerable time. I have never been so relieved in my life as a result I have had to alter my lifestyle, take the medication, slowly build up my mental health and taking enjoyment out of my life and being a parent. I returned to work after 6 weeks and have nothing but praise for the way I was supported and treated since, it’s easy sometimes to forget who helped you when you needed it, but remember you should and repay them and stay loyal to them in the future.
Anthony was a dear friend and comrade, whether it was that daft message, a phone call, quick pint, a music session or a day out to the football there was never a dull moment. His battle and outlook on life will stay with me forever, so brave and dignified.
My outlook on the future is still very much a case of uncertainty, I still question my morality and the what ifs creep in but I can shut them out and replace them with positive thoughts and behaviours; the truth is even neurotypical kid’s parents will have worries of their kids futures but unfortunately it’s not a level playing field with a child or a young adult with ASD is it?
For any readers who aren’t familiar with me I am very opposed to the current government and their savage cuts on social care, the NHS, education and the welfare state; I will openly challenge people in person or on any platform available. I make no apologies and stand by position, an example is £0 yes £0 extra funding for SEN schools from 2023, the current lot don’t want to educate my child never mind care for him if god forbid the what ifs ever became reality.
So when you think here he goes again banging on about Labour or Socialism or the likes you now have a deeper understanding of what makes me and my wife tick, I like you want an equal, fair and accepting society for my kid as you do yours; I don’t expect special treatment just a level playing field it’s not too much to ask. What isn’t ok is 1000’s of kids and families struggling out of education, unsupported, confused and suicidal in a world they don’t understand, parents struggling relying on charities and kindness as the magic money tree doesn’t stretch to our kids.
Recent political goings on don’t fill me with long term confidence so we have options to consider what is in our best interests as a family, for Reilly individually and what can we do to remove uncertainties and improve the outlook for families, ASD kids and as importantly young adults.
If we don’t take the lead who will? No one is my guess, bar our own community bubble of teachers, parents, families we are very much on our own in my opinion.
Ps. the second 6 months were an absolute disaster in terms of Reilly and his behaviours bless him but that’s another blog.