By day: mum of an autistic tot. By night: mum of an autistic tot.
This paragraph has been inserted about 6 hours after I began writing this post. People, I’m in pain.Not emotional yearning or existential angst but proper Oh my blessed stars back pain – lower back either side. I got me some drugs though (diazepam and diclofenac) so this post may veer a little so apologies in advance of my pharmaceuticals kicking in.
It’s been a busy week with a super busy weekend to round it off. My little Pwdin turned four and, to celebrate, had my nieces (aged 9 and 14) and nephew (14 – twin of my older niece) to stay. First things first, this is for my teenage niece: I will have my revenge for that Wiggles song you put in my head. It is haunting my every waking minute. I cannot and will not forgive you.
Moving on. The Pwdin had a brilliant time. Ok, he didn’t eat any birthday cake but this year he gave it a poke. He loved his presents – a toy tablet computer, a froggy bath toy (which he took to bed) and a little tiered racing track for wooden cars that has come out as most favouritest present of the day. It’s highly doubtful that Pwdin has even the remotest concept of birthdays at all. He rarely gets invited to birthday parties and we find it impossible to explain future events to him. He lives, rather gloriously and noisily, in the now. For Pwdin having his cousins over was a great treat. Why were they sleeping over? Doesn’t matter to Pwd he was just going to have fun. My “evil” niece was in charge of cwtches and throwing him around and tickles, my younger niece had to entertain Pwd with her infamous chicken dance. My nephew, all 6ft plus of him was a climbing frame.
For Pwd’s third birthday (his 2nd we went to Bristol Zoo and on his 1st he got his MMR jab and our lives didn’t change forever) we threw a small party at our house which doubled as a house warming do. This year that was entirely out of the question. We have no furniture in our dining room as our little monkey arranges and then scales it to dive into the kitchen. The carpets got smeared with poo, we replaced them with vinyl which got torn up so we replaced that with tiles which got broken and have gone in the bin meaning we don’t have safe and even flooring throughout most of the downstairs of the house. All the little Pwdin’s doing (with some help from KaBoom). Besides, last year, when his little friends came to play Pwdin completely ignored every one of them. We’ve recently had to fork out on a special needs car seat (I’m still too furious to write about that without using expletives) so cash was tight, hence the tiny celebration.
It was good to sit down with my hubby and a glass of pink and fizzy, that birthday evening and recall how we felt when he was born. Even before that: the OMG moment when I realised that my supposed UTI was in fact a pregnancy. How the anaesthetist and I were discussing how to get on to Countdown while I was having my c-section and the first time I got to hold that funny looking bundle of baby boy. We talked about autism: our disappointment with professionals, frustrations with friends who can’t accept or try to understand how Pwd’s condition affects him and us. We have never felt disappointed in him. Oh yes, he can be a frustratingly, infuriatingly stubborn character then so is someone else I know (guess who). I knew my child wasn’t typical from the start and I think having that realisation so early is a big boost to acceptance. Your happy hormones are flowing and you meet the child you’re going to love until your dying day.
I really do understand how parents who believe their child is developing typically only for that development to halt or for their child to regress must feel. I remember our wonderful (now retired) health visitor offering us counselling when it was becoming apparent to the professionals that our boy wasn’t “just a bit behind.” She thought we would be experiencing grief or guilt or both. She gently alluded to her belief, having worked with autistic children and adults that this would be what the child health team would be looking for. After a long conversation, this lady came to realise that what we needed was help to get a speedy, official diagnosis of autism because it was a conclusion we too had drawn from his behaviour.
Birthdays mark a year gone and yes, point to another year ahead, concepts that the Pwdin simply cannot understand. It may have been his birthday but it was a day for us, the people who love him, to celebrate this funny and complicated little boy.Pwd’s life, his way of living, is a beautiful thing. For Pwdin it was a celebration of cousins and cwtches.