Tag Archives: TAC meeting

Right on TAC

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.   

 

 

 

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Good News Catch-up: Good News Friday #47-49

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, peopleNot 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.

When Your Crystal Ball Breaks

There are a few phrases that have started to stick in my throat since Boo’s birth. I’ve blogged about one of my pet hates before when I explained why I find it hard to ‘take each day as it comes’. Another that really yanks my chain is one I haven’t heard for a while now, but which is circling round my head endlessly at the moment: ‘Sorry, my crystal ball is broken.’

It’s a phrase that I heard a lot once upon a time, not so long ago. It was in many ways the signature note of the early months of Boo’s life. In my blind fear and panic following his brain bleeds, then the PVL diagnosis, then the likelihood of a cerebral palsy diagnosis and after the onset of infantile spasms, I often used to ask questions after Boo’s future.

‘What does this mean for him?’

‘Will he be able to walk?’

‘Do you think he will be cognitively impaired?’

‘Will he lose skills?’

‘Will he be able to talk to me?’

There were others, too. It’s still a bit too painful to write them all down.

The answer was always a variation on a theme. ‘Harumph’; ‘You got me there;’ ‘Who knows?’; ‘How long is a piece of string?’, or my least favourite, ‘Sorry, my crystal ball is broken.’

I don’t ask those questions any more, although I’d be a liar if I said I didn’t think about them all, and many others besides, every day. You see, I’m a planner. I like to map out possible futures for us all (I did this pre-Boo), so that I can be prepared, think ahead, have a strategy, make the best of things. It’s just not possible to do that with Boo. I realise that now.

But there’s another important difference that has moved my thinking on from the bad old days. Of course, I want Boo’s life to be a long, healthy and happy one. A life of cognitive and physical potential. But I don’t equate happiness with him being able to walk any more, or even being able to sit unsupported. Life is more complicated and beautiful than that.

And I realise now that one of the reasons I so hated hearing that everyone’s crystal ball was broken was not just because no one could give me any guarantees for the future, but because the very fact that I had asked those questions betrayed a certain naivety and even, perhaps, shallowness on my part. No one can predict Boo’s future; no more than they can predict mine. And even if they could, knowing whether or not he attends mainstream school or walk won’t tell us if that future is a satisfying one or not.

It took a long time, and I still live with my old thoughts quite a lot, but I have moved on. It feels good to type that.

But now, the tables have been reversed. Now I am the one being asked to look to the future and I don’t mind telling you that I’m finding it really unsettling. Really, really unsettling.

It has taken me a long time to adjust my sense of time. To reconfigure milestones as inchstones. To think about physical and cognitive goals not as something that should happen in the next 3 months, but hopefully, with the wind behind us, the next three years. I may still have a tendency to micro-manage the day-to-day (and always feel like I’ve not done enough), but the future is something that I have partly let go of. I have goals, hopes and dreams, but my horizon of expectation has shifted. It’s still there, but fuzzier along the edges and more distant.

This has been a herculean effort for me. So I find it very hard, as Boo approaches 2 (actual, not corrected) in April that consultants and others are asking me to plan ahead and make big decisions.

Statementing and schooling come up at many of our appointments now. And different pictures are being painted. Sometimes I hear of special schools, communication devices and a non-verbal future in which we have to wait to see the extent of cognitive disabilities emerge. From others, I hear he’s not disabled enough to go to the specialist schools that are very near us. That there is no concrete evidence of learning difficulties yet. That it’s not clear what would be the best environment for him.

Then there’s a pregnant pause…

‘What do you think, Mum?’ (Why no one can call me by my name is anyone’s guess.) And then: ‘What do you want for, Boo?’

Surely, what I want is irrelevant, I shout in my head. What he needs is what matters and, although I have strong feelings about various things (I know he understands everything we say to him, he does have some words and communicates with them, sounds, and in other, non-verbal ways), I don’t really know what he needs to maximise his potential, or more to the point, what institutions might be able to meet those needs.

It’s the same with Social Services. I am grateful that they are looking to offer us money to help contribute to the astronomical costs of making our house (the house we moved in before I was pregnant so that we could have a second child) accessible for Boo. But I can’t answer their questions. ‘So, do you think Boo will be able to walk up the stairs by the time he’s five?’ ‘Do you think he will be able  to bath and toilet himself by the age of 8?’

I want to scream at them, or failing that to say what I have hated hearing so many times before: ‘Sorry, my crystal ball is broken.’

Don’t get me wrong. I am glad people are consulting us. And some clearly take our assessment of Boo very seriously. That hasn’t always happened. It’s nice that it does.

But let’s face it, I’m no clinician and although I would argue till I’m blue in the face that I know him best (I do!), I am not a healthcare or SEN professional with enough local or sector knowledge to know what out there in home adaptations or schooling is best for him. And let’s be frank about this. Even if I did, not much of this is in my control. Geographical luck and, what it always boils down to, money, will play a big part in all this. We are the parents of a child with additional needs. We just have fewer choices than most.

I feel in the dark. Newly infantilised in only a slightly different way than the way I felt after his birth. It’s difficult to process. And it’s disorienting having made this mental leap to Boo let’s-just-see-how-things-pan-out time, to planning mode.

We have our first TAC (or Team Around the Child Meeting) in March. It has taken 10 months to set up and I hope it will help to clarify some of my thinking about all this, although I am really not sure what to expect of the meeting and would greatly appreciate any advice anyone has on how to get the most out of such meetings.

I know that the statementing process should start in the next few months. It is frightening. I know there are opportunities, but I can’t help but feel that we are walking in the dark. He is so young. So much could change. So much will.

How on earth can I navigate the path ahead when I can’t even see it beneath my feet?