It’s been a while, I know. I’ve had a few days away with work. Exhausting and busy and hard work at that, but good and a much-needed break, if you can call a four-day 8 a.m. to 7 p.m. work trip on another continent a break. Well in our world, you can. No therapy and no appointments (although there were a few groggily answered transatlantic wake-up calls from people in the UK trying to book appointments with me for Boo at 5 a.m. local time). And it presented a much-needed opportunity to mainline black coffee (while hot, people!) and catch up with some of my closest friends, who I first met through work. It was good and it was fun, although I missed the Boos terribly, and I’ll admit that I have rarely been as tired since I came back. I’ll write more about that soon.
For now I wanted to let all the lovely folks who have asked on Twitter or email about our TAC meeting last week know how it went. There’s a short and a long answer. (Isn’t there always?…)
The short answer is: good. Better than we’d hoped. The long is: good. Better than we’d hoped. But crickey, we have a lot to do.
In short, then, it was a very positive atmosphere. Everyone clearly cares a good deal about our little boy and sees in him many of the things we do. Everyone praised his determination. He was called a ‘therapist’s dream’ on more than one occasion. Because you see, he so wants to learn; he so wants to impress. You do, Boo. You do. Trust me.
It was also good to see people we see often and who work in the same building but rarely pass by each other’s corridors talking together. And it was just brilliant for the first time to seem the army of healthcare professions who helped him not as individuals, but as a team, sharing ideas about problems (getting appropriate utensils/cutlery, for example, to engage in assisted self-feeding) and services he needs access to now or soon (such as communication aids).
It was great to see them focus on what he could do, not what he couldn’t. It was fab to learn that they see no reason why he shouldn’t move to the nursery room to be with peers his own age (I was both thrilled and broke out into a cold sweat when then said this, I must admit). And most of all my heart skipped a beat when they said that there’s no evidence yet (things can change, of course) of cognitive disabilities. His speech delay and problems are, so far as all the flash cards and other tests put his way recently suggest, are motor in origin. When I saw the brain scan that showed the extent of his PVL (I can see it now if I close my mind’s eye), I could never imagined that this would be possible. One set of challenges, at least, seem to have been dodged.
We even spent a bit of time in the meeting joking about things, too. Mainly about how nutty I am. About how crazily I research things; how I take pride in resourcing things that are ‘unresourcable’; about how I take my parent-carer homework very seriously (I even have a laminator now, don’t you know). But as the meeting went on, it became abundantly clear that we will need all that nuttiness and a whole lot more over the next 1-2 years. Because finding and getting others to agree on the appropriate educational setting for Boo is going to be, in the words of someone at the meeting, ‘one hell of a hill to climb’. If you have a child with additional needs, I didn’t need to tell you that, did I?
First there are the challenges of the new system for SEN provision. No statementing now, but EHCP, a new system that is not yet fully understood by anyone, so far as I can see, even those piloting it, or being piloted in it. Then there’s the particular challenge that Boo presents, the ‘square peg in the round hole’ analogy was used over and over. I may deck the next person who uses it (only in my imagination, of course).
What do you do with a severely physically disabled child who seems cognitively age appropriate? What do you do with a child whose barriers to learning are primarily bodily? Technology can help meet those challenges, but it can’t provide the hourly physical care that Boo will need. Technology can’t do his his stretches for him, remind him to move the position of objects around him so his tight arm muscles don’t shorten. Technology can’t help him go to the toilet or play stuck in the mud in the playground.
People can do this. But getting LEAs to fund those people, for the right number of hours, the right kind of person? Well, that’s a different story? And do we even want Boo to be in mainstream education, which to my surprise, his developmental consultant thought we should push for? Do we want him to be likely the only severely physically disabled child in his school? The child who is always a problem from the school’s point of view (no matter how caring the institution might be).
We have been told that there is no school in our county that seems provisioned to meet Boo’s particular needs. Mainstream with support might be possible, even desirable, but persuading those we need to persuade will be tough. And finding the right mainstream environment would be hard indeed. But then SEN schools near us don’t seem right for Boo either. ‘They wouldn’t want him’, we were told rather bluntly. SEN schools in other nearby counties are not a square fit either (see even I’m using that bloody awful analogy now), and getting agreement for out of area funding and transport has been described as ‘very challenging’.
And then there’s the biggest challenge of all: Boo is not yet two. Not till next week, that is. He shouldn’t be two for three months, of course. And when I think back to Boo 12 months ago and Boo now, well… let’s just say a lot can change and it will. Often for the better, but also for the worst. No one in their right mind can predict anyone’s future when they are 2!
So I now have an even longer to do list than normal. I have more appointments than ever in the diary or to make. Parents of children with disabilities who have opted for different educational systems to meet. School visits to arrange and liaison workers to meet. But it’s good to be prepared. And this matters too much not to take seriously. So I will do it.
But in the process of dealing with laws and LEAS and words that unhelpfully reduce our children to problems (putting the words Care and Plan into the EHCP doesn’t change that, folks) I don’t want to forget what the TAC meeting confirmed. Our little boy is bloody amazing. And we love him and will fight tooth and nail for him so that he has every opportunity to maximise his physical and cognitive potential, no matter what that is, or where it needs to be realised.