There seems to be a pattern forming in that I started this latest post shortly after 04:30, in my head. I would love to be able to say that I was awake because I was desperate to start the next instalment but, I am sure by now you will have guessed the reason as to why I was up at such a ridiculous hour.
And whilst most of you are wondering tomorrow as to whether you will get an extra hour or an hour less in bed, it will not make the slightest difference to us other than the fact the clock will say a different time. We will be awake at the same time as we usually are, whether that be 4, 5 or 6 am. Our lives aren’t improved by a clock change or whether it’s the weekend or annual leave, when he’s ready he’s ready.
I’d love to be able to say, I skipped into the room and was completely understanding of his needs and why he might be awake at such a time. I’d also like to say that as soon as I explained it was still night time, he went back to sleep; neither are true. I can feel my heart racing as soon as I hear one of his little noises coming from his room, whether that be him creeping to get his torch out or a little quirky sound that he makes.
So how many people watched The A Word this week? Interestingly, none of my friends asked me whether I had watched it and maybe that’s because of something I wrote previously but as soon as I asked a few people, it became apparent that people had watched it and had been interested in how the story was portrayed.
I had purposely waited until Kev was back home to watch it; I didn’t want to watch it alone. When I said I wanted to watch it he had pointed out that I didn’t usually like to watch this kind of programme and he’s right, I don’t. I thought this would be different though in that it was a drama as opposed to a documentary and I know the National Autistic Society had been consulted for research purposes and I was intrigued.
Within five minutes of watching it though, I wanted to look away as once again it felt too close to home and I wondered whether that’s what parents of children with autism feel when they read my blog? There were so many similarities; if I hadn’t known better I would have thought that someone had read my blog first and poached a few ideas! I had read articles in the press and Twitter this week, highlighting the fact that it was written from A perspective and that not everyone’s experience is the same but it was remarkably accurate right from the behaviour of the child (ironically called Joe) and the feelings and experiences of the parents. The main difference being was that the Mum was overly smiley and very patient with her son, to the extent that when he woke in the night, she even took him out on a car journey. If only we could all be that smiley. I can’t wait to see her a few years in.
The parents were completely focused on their som’s strengths and his abilities to recall information, in particular, knowing lyrics to songs and it made me think how I react to some of Joseph’s achievements and wondered whether I was deluded about now and the future. A friend told me that I’m not deluded and I’m opening up a world to Joseph that he wouldn’t have if I hadn’t worked so hard. We all have our off days and it’s great to have encouragement from those close.
I probably will watch future episodes out of curiosity and for fear of missing out on something. I would be interested to hear what other people think about the series and whether you have any questions as a result of it.
On Wednesday, I took the day off work so I could take Joseph for his appointment with the Paediatrician and to see a show that Chris and Pui from cbeebies were in. Unfortunately, Chris & Pui cancelled and it left us with an appointment that I never particularly look forward to. The name of the clinic in itself makes me angry – ‘Neurodisability’ and leaves me feeling upset at yet another label.
I spend my days convincing everyone how great Joseph is doing, yet I feel the appointment is my opportunity to speak up about the areas we find difficult. I am sure it’s not meant to be a counselling session but that is how it turned out. I explained how Joseph is becoming very headstrong and flexing his muscles; more in a verbal way than physical at present and how his night-waking causes us both problems. I also told her how I was concerned about his communication and how he seems to act out everything he has seen and heard time and time again. There was no real solution for any of it other than the possibility of a slow releasing melatonin supplement that might help with the night-waking but it could only be given in tablet form. I knew that would be virtually impossible and didn’t fancy the physical/mental battle that would likely be involved in administering it. Joseph wasn’t phased by the appointment and her discreet observations and only stopped his own show to loudly burp at the doctor before carrying on with his routine. Once again, I left with a metaphorical pat on the back and a referral to the specialist nurse. I felt drained and tearful and was pissed at Rotherham Theatres/Chris & Pui for cancelling our event to take the sting out of the appointment and went to the toy shop instead (both for me and Joseph).
Back to the present day, after our early start, I still managed parkrun and with an improvement on recent times too. Joseph was equally successful with his sporting achievements and as already documented in my own Facebook, knocked out a 25 metre swim down the length of the pool. He goes to a class for children with special needs and most of the children despite their disability swim up and down (mostly with floats) as instructed. Joseph on the other hand messes around and only does what he is told to do when it’s his turn for 1:1 with the teacher. He smiles at them sweetly when he’s with them but takes no notice the rest of the time. I swing from wanting to deck him (said for comedy value, not to set alarm bells off for any social workers reading this) and wanting to laugh at how he plays the situation. He will swim only if he has no other option than to do so and this can only be achieved by them lowering the floor so the water is deep enough so he cannot walk. I asked his teacher today if he can push him a little more and told him that I know he can swim despite him choosing to frolic in the pool week after week. So near the end, he moved everyone out of the way and walked him down to the far end of the pool. Prior to this, I told him he had to swim all the way back to me, no walking and if he did he could have the iPad when he got back home. He looked at me with the usual shiteye no doubt thinking “I have no idea what you are going on about but I heard iPad”. I was willing him to swim (so was another parent) and wondered whether he would just stand up halfway across, making me look like an idiot (it wouldn’t be the first time); but he didn’t and he was smiling at his teacher as he was bellowing at him to kick his legs and move his arms. In fairness, he did it with the minimum amount of effort but he made it. I made a fuss, high-fived and he got out of the water and looked at me again with his perfected shiteye, oblivious to his achievement. The teacher handed him his card to exchange for a certificate and badge and he handed it back and politely said “No thank you.” He quite clearly could not give a shit as to whether he swims a full length or get a certificate but yes, I am proud! When we got home I told him to tell everyone what he had done and he said he had swam 25 minions. I am not sure whether a minion is more than a meter but I like the sound of it.
I will leave you with this lovely thought that another fantastic friend of mine shared with me today after I told her my concerns about the tv programme.
She called her daughter over and asked “How do you see Joseph?”
Her response was a shrug and “I like him just the way he is”
My friend said that she thinks that this generation of kids is and will continue to be much more accepting of all compared to previous generations and even ours.
I am constantly told how lucky I am to have Joseph but I will never take for granted the friends I have and the occasional wisdom they display 🙂