Monthly Archives: June 2015

Targets and other Torments

I’ve written on the blog many times before about the sense of weight and guilt that comes with Boo’s enormous long list of therapy goals. We have targets for physio, SALT, and OT not to mention our own private goals for Boo.

The lists are huge. Not metaphorically. I mean very literally. They are huge! They live on our fridge. Don’t use these as a diet aid, by the way. Seeing them on the fridge door makes me want to eat my body weight in cheese and double cream whenever I look at them.

I’m a list kind of person. I am what the self-help industry would call goal-oriented in my personal life. I have a long-term plan. I break it down into steps. I do my best to stick to the plan. And will usually flog myself until I have achieved what I set out to do.

But I can only help and encourage Boo. I can’t make his body do things it struggles with. And I have no interest in making his life any more difficult than it already is.

One of the biggest mental adjustments I have had to make since having Boo is letting go of goal-oriented me. For ages I tormented myself with the ‘will he walk’ question. No one knew, of course, whether this would happen or not, but most thought it unlikely based on the extent and nature of his brain damage. But then someone gave me a glimmer of hope. ‘If a child sits unaided by two there is a very good chance they will walk (maybe with a walking frame) by the time they are five.’

I wish they had never told me. Hope can very quickly turn into a stick to beat yourself with in this here life of ours.

I crippled my back trying to get Boo to sit before his second birthday. I was fixated on this happening before he hit 24 months uncorrected. When that was clearly not going to happen, I counted every darn day of his eleven weeks of prematurity and went for 24 months corrected. That date passed too.

Boo is now over 3. He still can’t sit unaided for more than a few seconds and cannot be left alone in this position. But we have just tried a new walker which we are hoping to buy and he steps in it in a way that makes the Grand Old Duke of York look like a complete amateur. Like all the amazing kids I have met since Boo’s birth, he just does things in his own way, on his own schedule. This is goal orientation Boo style and it is beautiful to watch.

There was a time when I felt the fading prospect of independent sitting with great sadness. Now I’ve adjusted. My sense of time is much more elastic now. I worry less about where Boo is relative to others. Frankly, that way madness lies and we celebrate each and every inchstone Boo meets whenever is the right time for him.

But of course, sometimes, I have a wobble and forget all I’ve learned. Children’s parties are a particular trigger (if he gets invited to them at all). Lugging Boo round a soft play for an hour the other week so he could join in while all the other kids ran hysterically like puffed out beetroots who had had a week’s sugar intake in a minute while their parents drank coffee and talked about the inequities of catchment areas was a weak point for me, and meant I couldn’t walk with a straight back for 48 hours. Sissyboo’s sports day last week was another.

And then there’s the biggy on the horizon. The milestone we can’t dodge or avoid. It will just have to be met by hook or by crook and whether he or we are ready or not.

School.

Next September Boo will start school. That may be 15 months from now. That may seem like an age. In special needs elastic time, though, it really isn’t. It really, really isn’t when you consider all the things that we would like to have set Boo up to be able to do before he starts school. There’s joystick control so he can (please, please let this happen) learn one day to move himself around. There’s potty training, so important for his dignity and for others’ perceptions of him (which will in turn, of course, affect him). There’s his ability to use an AAC device because he will never be able to write. And then there’s the four pages of A4 targets on the fridge.

It feels totally overwhelming. Impossible. Even with 15 months.

But it also feels imperative. We have to set him up as best we can. We just have to try our best to achieve these things with him. But we also have to let him be a toddler who can’t toddle, a little boy whose life can’t just be about goals, but has to be about living. About play. About fun.

I don’t know how to square this circle. I know that school doesn’t mean the therapy train stops (more’s the pity). I know that Boo will continue to learn (that’s the point of school, right?). I know (I hope) we have time to help him. But I also feel totally suffocated by the prospect of the next 15 months.

Have we made the right choice of school? Will we get that choice without a battle? Will our LA get their act together enough even to transition him to an EHCP before he gets there? Will we have done all we can to ensure he has the smoothest transition to school possible? Will it be enough?

I just don’t know. And that’s hard to deal with. Really hard.

A Toe in the Water

Hello again. It’s me. Seems I can’t keep away.

For a long time now, I have barely posted on the blog. I’ve had my reasons and even tried to explain most of them. But it was one thing to take a break from blogging because everything felt a bit much. To say to myself that I probably wouldn’t blog again, like a did a little over a month ago, was quite another, it turns out.

In the past six or seven weeks, I’ve been itching to get back to the blog and have had a lot of time to think about why blogging matters so much to me. Several things have become pretty clear to me in that time.

For one, blogging helps me keep track of Boo’s progress. This may sound odd. After all, every inchstone achieved by Boo is so hard won. Isolating an index finger to point is like completing an ultra-marathon in our house. And I will never forget how hard it was for him to learn that. But I can only tell you when he learned to do that because I wrote about in on the blog many months ago.

You can’t see glaciers moving, but if you only keep track of them you can see they do with a grace and poise that is truly miraculous. My blog did that for Boo’s development. I miss keeping track of him and losing sight of the bigger picture. It (by which I mean he) is really quite astonishing.

Blogging is also one of my main points of contact with other people in similar (or sometimes quite different) situations. I have learned so much about equipment, dealing with services, getting what’s needed, or just by commiserating with others over the past couple of years. Without the blog and that connection, I don’t exactly feel lost at sea, but I feel like my life preserver has a slow puncture. I don’t need to be rescued (yet) but I want enough support so that I can swim to safety on my own.

Another thing I have come to realise in the past few months, is that I care just too much to just be quiet and not speak out about the terrible injustices I see as health and support services are cut for vulnerable people. In the past two months I have had two healthcare professionals break down in front of me about their fears for their patients. Boo is one of these patients, of course. For now he is fine. But I am not confident he always will be. This terrifies me and I can’t just keep quiet about the things I see. Once the scales fall from your eyes, as they did from mine a little over three years ago, you have a responsibility to act on what you see.

But of course, the biggest thing I realised (if I had ever been in any doubt) is that I am, frankly, saner and happier when I inhabit this little corner of the blogosphere. Writing helps me think. Writing helps me make sense of how I feel. In the last few months I don’d mind telling you that I have had a bit of a wobble. Nothing major, but a wobble nonetheless. And the sway is getting a little bigger each day. I don’t know whether it’s the endless therapy goals set and not met. The struggles for several vital pieces of equipment we are struggling with. Maybe it’s my ever increasing back pain (which scares me not because I can’t put up with it, but because I am terrified that I will wake up one morning and not be able to pick him up that day).

Maybe it’s the significant birthday coming up next year. Or my worries about Boo’s sister, who is doing well in so many ways, but has also had a big wobble herself lately and I don’t know how to fix her. Maybe it’s that Sissyboo is changing schools this year and that Boo starts school next near. Facing up to the prospect of switching to EHCP, of battling to get him our choice of school, and of meeting the endless list of targets people think we should try to meet before he starts school is frankly completely overwhelming.

It’s all too much. Maybe this blog will help me make sense of things. It’s got to be worth a go, hasn’t it? So, I’m going to see if there’s still life in Premmeditations in the hopes that it can help me breathe again.