Thanks everyone for the positive response to The Fail on Sunday. The shares and retweets are greatly appreciated. Big thank you though Chris “he just an ickle beebee” McKee for alerting me to it. Chris has agreed to do a guest blog for this site soon. He really is a fantastic writer so I’m looking forward to that!
Last week was properly busy so I didn’t get around to an update on Pwd’s MDT (multi-disciplinary team) meeting or his first ever parents’ evening but I will now.
The MDT happened on Tuesday morning and I was very pleasantly surprised at how it went. All his therapists – SALT (speech and language), OT (occupational therapy), nutritionist, special needs health visitor and paediatrician – are now those based at his school which means he won’t need time off for appointments and such. I already knew his new speech therapist from doing the National Autistic Society’s early bird course this time(ish) last year. I have every confidence that she will make more progress with Pwd than the previous one who would talk of him as though he some kind of abstract idea even while he was present in the room. His new OT is lovely and has an autistic child herself but she’ll have to go some to beat the old one who, even though I don’t believe in psychic ability, I think must have been psychic!
The greatest surprise for me though came when I discovered the new paediatrician had taken the time to read Pwd’s notes! What a revolutionary idea. She actually had some clue about the child we were talking about. Amazing.
The meeting was held at school so, when it was finished, I went to see my little Pwdin in class. He loves school. He was so happy running about the yard and under a parachute draped over the fence that he didn’t notice me for ages. When he did…I got the biggest hugs and kisses and loveliest squeals ever. He wanted to be cwtched so tight. My real confirmation of just how well he has settled into his class came when I had to leave: I could! No tantrums, no tears – nothing! He’s a very fortunate boy to have got a place in such a great school.
At about 5.15 I was back at the school with Pwd and Hubby for parents’ evening. the class teacher and teaching assistants are, without exception, lovely and Cled has become rather attached to one who says that, “Pwd has only gotta start giggling and he sets me off. He’s so funny.” It’s great to hear such lovely things about my boy.
Nothing unexpected came out of the meeting. His two main targets are to sit in a normal chair without straps and to respond to his name. Might seem little things or even excessively simple for a 3 1/2 year old but these are things Pwd can’t do and stand in the way of him enjoying some activities safely. Two things the staff had really noticed is how much Pwd loves water and loves to try to wet everybody’s hair and what an excellent sense of rhythm he has. Unky Cion will be proud!
So now it’s half term. On Saturday Pwdin had a very happy reunion with Aunty Mel, his former respite carer, who was providing an extra holiday session for us. As soon as he saw her he ran right up, full of smiles and ready with kisses. I, for one, have been so grateful for the respite we get and the patience and warmth of Melanie and now, new carers, Denise and Pauline. They’ve all seen cwtchy and cantankerous Pwd and are still willing to take him out!
If there’s one criticism that gets levelled at me when talking about autism it’s that I gloss over the difficulties of having an autistic child. I don’t think I do and I’m certainly not going to now…
My babe is desperately missing school. He doesn’t understand that it’s holiday time and that when he comes down stairs in the morning the bus won’t be coming. Also school and his other weekly activities respite and scientific tickling at the WARC keeps him busy and wears him out. Although it’s only school that’s stopped I think that has upset the little fella’s rhythm. He’s waking up at night and screaming for hours on end. He hasn’t got a temperature, he isn’t ill he’s just out of sync with himself it seems. Sunday at 3.15 am he woke and screamed and stomped his way through to 1pm when he finally crashed. Soon as he woke up, the screaming and wailing began again.
His mood isn’t good. I’ve been bitten several times and his eating is more erratic than ever. He is communicating just about everything in long gutteral sounds that sound something like a very angry calf mooing. All our usual approaches have fallen short and we’re a very grumpy bunch indeed. So yes, living with an autistic child is hard. It’s knackering and frustrating and when Pwd’s going through one of these phases it’s hard to remember that he can’t help it, what a darling he usually is or where I put my sanity.