OK with not being OK

I have never really been comfortable using the word ‘grief’ when referring to my son’s autism. Especially in the early days. On Diagnosis Day, the Health Visitor (whos involvement and support afterwards was virtually non existent) said to us ‘You will need time to grieve’. It was one of those inappropriate and damaging things that people have said to me on my journey, that will be etched on my heart for ever (but not in a good way). That is, along with other faux pas casually dropped into conversation by others, family and friends included. NB You have to be careful what you say to us Special Parents, we have great memories. My tongue is firmly in my cheek at this point, but you get my drift.

How could I possibly grieve for my beautiful, physically perfect three and a half year old, who was very much alive and well? It made me feel physically sick. It was clearly something she had read in a textbook or been taught on a course. Totally the wrong thing so say to me at this point.

Ten years down the line, I do see that there IS a grieving process, a sense of loss for the child that could have been, life you could have had, yadda yadda. But personally, I prefer not to dwell on this idea. Well, I try not to. For me, it’s like dwelling on the fact that I don’t look like a Super Model or have a natural aptitude for maths. You know, things you can’t change. It is what it is.

With a disability like autism, you are constantly battling with the ups and downs of the condition (which has been the main point of most of my previous posts). Loving and caring for a child that can display behaviour that is both devine and monstrous, often changing from minute to minute, due to his condition and through no fault of his own. But the intense love that you have for him usually pulls you through, well on most occasions anyway!

This bizarre juxtaposition of feelings and emotions was perfectly summed up by a friend in the same situation as me. She told me she was at the stage where she was ‘OK with not being OK’ about his autism. I totally agree. Who would ever be OK with it? Why would you? I’m pretty much at that stage too. That’s not to say we don’t love the bones of our boys. That goes without saying. Always.

But no grief for me, because my wonderful son is very much alive and kicking. Although he’s snoring away very contentedly right now ❤

A Game of Two Halves

Our Autism Awareness Day started at 3am this year. Stripping down a wet bed and settling the boy back to sleep.
Then snuggles and watching his favourite episodes of The Weakest Link on YouTube.
Standard stuff. However, his morning wasn’t so happy.
It’s the school holidays so his anxiety is high and puberty and hormones have kicked in with a vengeance.
Tempers were flying and he really wasn’t a happy chap.
So when I checked in on The Socials, I didn’t much feel like ‘Lighting it up Blue’ for autism awareness.
More like lighting it up grey, or a crappy shade of brown.

I’m not a fan of Bank Holidays in all honesty.
I kind of feel short changed and under the impression that ‘normal’ families are enjoying lovely days out, in a Darling Buds of May picnic stylee or off on some exotic family holiday.
Not struggling to control their son and ease his anxiety, plus entertaining two very mainstream daughters on a wet and windy day.
The idea of celebrating the condition that has left our son with such profound difficulties, not to mention putting a huge strain on my husband and daughters and, more selfishly myself, just seemed ridiculous.
Those positive posts about neuro-diversity with their bright blue lightbulbs and multi-coloured jigsaw pieces could naff off.

After showering and breakfast, we headed off to some of his happy places.
Church and Aldi! He’s always loved going to church and it’s somewhere where he feels safe and calm.
I’m guessing that the acoustics and architecture help.
So we had 15 minutes sat in church, with me reading out today’s TV listings, which really calms him down.
Random, I know, but he loves lists.
Then on to the supermarket, which was packed with families (thus destroying my hunch about the family picnics, or perhaps they were buying food for them!).
Judging by the horrendous weather today, I’m guessing that wasn’t really a possibility, but you get my drift.

Once we got home, he was back to his happy zone.
He was happy to crash with me on the sofa, with his fluffy blankets and technology, whilst I read my book and scratched his back.
It was a peaceful couple of hours and I got my book finished.
I don’t get much opportunity to read, but when I do it is usually a book about autism, much to my husband’s bemusement.
I see it as improving my Special Mummy skill set.

The book was ‘A Normal Family’ by Henry Normal and his wife Angela – telling the story of life with their autistic son Johnny, who is 19.
It really is a great read, the kind of book that I could only dream of writing.
It also contains some beautiful poems penned by Henry.
I warn you Special Mums – you will read them and weep (but in a good way).
It’s great to hear about how other people cope with the challenges of Autism Parenting and their book is honest and frank, which I love.
There’s no room for beating about the bush in our game.

Once again our day has been split into two halves: a stressful, desperate ‘I want to run away with the circus’ kind of morning, followed by a lovely chilled afternoon of snuggles
and interaction. One of the messages of Henry’s book is to live in the moment.
It’s just easier that way.

The moment I’m living in right now is a hungry boy waiting for his tea alongside his two wonderful sisters playing Lego together.
Husband is drawing a bath. The little one dressed in just her leggings, crazy hair flying in every direction – like a miniature Iggy Pop.
It’s a pretty good moment. I think I might turn that lightbulb on now……