Today is Boo’s first TAC meeting. TAC stands for Team Around the Child meeting. We have 10 of the cast of thousands involved in Boo’s care meeting at his nursery to talk about him face-to-face. It’s been a long time coming. 12 months, nearly. And the organisation has been shambolic, to put it mildly. But it is finally happening.
I am grateful. Very grateful. Grateful that busy healthcare professionals are taking the time to meet with us in this way. Grateful that Boo will, for once, be at the top of people’s agenda rather than mid-way down yet another waiting list. I am grateful that The Grumposaur will finally get to meet Boo’s developmental consultant, speech and language therapist and ask them questions I have asked many times before.
And I feel sick. I feel really, really sick. Because the agenda is a tough one. Education and statementing, or whatever the new acronym is and the process that no one seems fully to understand, are high on the list of talking priorities. It has the potential to be overwhelming as we discuss a little boy people are starting to describe as a ‘square peg in a round hole’. A little boy who is severely disabled physically, but seems (for the moment at least) to be cognitively age appropriate. You can’t pigeon hole, Boo, I was told last week. ‘He doesn’t fit the common profiles for disabled children.’ This is going to make a difficult process more difficult, I’ve been told. ‘I don’t think the county is provisioned for kids like him’, I was informed. This stuff is not fun. But it has to be said. We need to start thinking long-term soon. Oh crap…
I have had a big wobble about all of this over the past few days, hence the Twitter and blog silence. I emailed my friend over at Tough Little Cookies about it all. She said a lot of lovely, smart and sensible things, because she is lovely, smart and sensible. One thing really stuck in my head, however. ‘Remember, you know him best of all’. She’s right. Whatever is said about Boo this afternoon will not change how I feel about and dream for him at all.
So, instead of adding to my long list of questions for the TAC meeting, I decided I would finally get round to writing a Good News Friday post, by way of a bit of a catch-up for all of you about all things Boo, and a reminder to me of all I have to be grateful for on a day I really need reminding.
Motoring On: I confess, physio can feel like Groundhog Day. Sometimes I think if I spend another 30 minutes trying to teach Boo to roll I will explode. How much harder must it be for him than me, though? And he never gives up. What right have I to want to do so? The problem is not just the repetitiveness of the exercises (although I try to find new and fun ways of doing the same thing for the 500th time). It’s the fact that doing it every day means that you often can’t see the incremental progress and feel you are banging you head against a brick wall. We’re all about the increments here, I reminded myself yesterday. So I took a step back. I looked at the 100s of photos I have of Boo on my phone and took stock of his achievements. This is what I realised
Boo can sit with diamond-shaped legs (straight legs cause increased tone and his back to curve) for up to 2 minutes unsupported. Did I really just type that? 2 minutes? How did I not notice what an amazing achievement this is? He has to prop with one arm or he topples as his trunk is so wobbly. But he can do this and his saving reflexes, while not totally reliable, are improving all the time.
Last week I took the first ever picture of Boo while I was sitting from in front of him. Usually I have to sit behind him (his bum steadied by my crossed legs) and flip my iphone camera round. This is a huge milestone for us both and the photo is now officially one of my favourite pictures of Boo (and there is a lot of competition let me tell you).
And also yesterday, whether by luck or judgement, Boo rolled once from back to front. He has never done this before, people. Not without help. Not in 2 years. I had left him on his change mat on the floor in the dining room, to get the change bag from the living room, 5 feet away. Sissyboo was in the same room with him, but sat on her chair finishing a drink. I heard a noise. I could see Sissyboo through the doorway and heard her scream, I thought at first with fear. But it was actually a squeal of delight followed by a bit of fear when Boo donked his head on the wooden floor.
He had rolled off his change mat. He was on his tummy. Neither of us could believe it. He had done it. Neither of us had seen it, but he had done it. We then spent 30 minutes trying to get him to do it again. Of course, he didn’t, but he found our efforts to make him do something he didn’t see any need to completely hilarious. We were late to visit a friend as a result.
The roll may have been a one-off. But it might not. Independent mobility might be coming. It is one of the things I wish for most for him. Please let this be the beginning. Please.
Speech: Progress in this department is still very slow, but I feel that his cognitive skills are pretty good, backed by an encouraging Portage assessment last week that identified him as having entirely age appropriate skills except where his physical problems impeded his progress. It’s becoming clearer to me, his Portage teacher and speech therapist that Boo’s problems seem to be oral motor (muscular) rather than necessarily cognitive, although we can’t be totally sure. We are getting very clear ‘yeahs’ from him now, ‘hiyas’, lots more ‘dads’ and the odd ‘mum’, not to mention various other sounds and odd words. My homework for this month is to work on ‘m’, ‘b’, ‘d’ sounds, blowing (he has no clue how to do this as yet), 10 basic verbs on flash cards (and I have finally bought a laminator to make them) and colours. That’ll keep me, I mean us, busy.
Clapping: Clapping was put on Boo’s target list by his old Portage teacher when he was a year old. I wasn’t happy about it being on there. It’s not that I don’t want him to clap, but his arm function is severely challenged. Moving his arms in the necessary way was and is tough for him. Doing it without closing his hands into fists almost impossible. Of course, he kept failing this target. Our new Portage teacher took it off his list. I like his new Portage teacher. And then last week, I said ‘Mummy clap’ after Boo done something well in physio. He copied me. His arms moved well, if not quite symmetrically, so one hand was raised slightly above the other. One hand was open, the other was fisted. But he did it. He only bloody did it. And now whenever you say clap, he has a go.
Conductive Education: Boo loves his conductive education classes. He is worked so hard there, but he has so much fun. He loves his teachers and his little friends. We are so lucky to have found this wonderful place. And he is making such strides there. I know that the School has helped him to achieve all of the things I’ve described above. His propping on his tummy has come on in leaps and bounds. He can hold his head up with nearly straight arms now much of the time. I never thought this would or could happen. He is trying, not very successfully, but nonetheless, to crawl. He can do four-point kneeling easily with splints on now, and without them. This is harder, but he tries, nonetheless, with some success. His supported walking is amazing. He is stepping, folks. Stepping! And he is ahead of the game. His teachers think it’s hilarious, but Boo is always starting the next thing before the class moves on. So when we arrive and everyone is sitting in their chairs, he picks up his name card to give to his teacher, because he knows that’s the next bit. Then he raises his arm in preparation for the vocal exercises. He rolls before the bell is rung for them to do it. He knows the routine. He’s ready for what comes next. He wants to show them he can do it. He mostly can.
So whatever happens in today’s TAC meeting, this is what Boo is like: tenacious, happy and living life with no sense of his own limitations. Nothing can change that. And if I need to re-read this post this afternoon to remind me of this. I will.