Tag Archives: play

It Takes Two

It’s been a bit intense here for the past week or so, so I’m thrilled that Small Steps Amazing Achievements has come along to knock some sense into me and remind me how good things can be.

One of the loveliest things about Boo is how friendly and sociable he is. These things get commented on frequently, especially by healthcare professionals. They read about Boo’s catalogue of medical problems before meeting him and assume certain things about him: that he won’t be able to engage with the world around him; that he won’t be sociable; that he won’t vocalise or have words; that he will be angry and frustrated. None of these things is true. He smiled from 2 weeks of age (corrected), has always had good eye contact and loves people, who he interacts with though noises, facial expressions and mimicry.

I don’t take any of this for granted. We are incredibly lucky that he does all of these things, that his brain damage doesn’t seem to have affected his sociability.

But for all his love of being around lots of people, Boo necessarily spends a lot of time one-to-one with a solitary grown-up. It’s how he learns. In order to maximise his physical potential, he has a least 1 1/2 hours a day with one adult doing physio, or attempting to self-feed, or practising fine motor skills (a real challenge for him). This is one of the many reasons that when we were deciding on childcare for Boo when I went back to work we came to the conclusion that we wanted him to go to nursery. He needed and deserved to be around kids his age, we thought. He gets precious little of this normality in his life.

But of course, the minute you put Boo with other kids his age or (in fact, as things are in his nursery) younger kids, his difference sticks out like a sore thumb. He can’t crawl with them or chase them if they run off with his toy. He even has to have his own box of toys, mostly plastic, easy to hold, flashy noisy toys that he gets good sensory feedback from, in a nursery where all other toys are, as a matter of policy, natural (wood, metal and cloth). The other kids covet his contraband toys. They love the gaudy, flashy, lighty toys they can’t have. And they are mesmerized by his glasses too. They long to play catch with them…

Some days, on not so good days, I worry that putting Boo in a group with lots of healthy, neurotypical kids, just teaches him he’s not like them. But then I started to notice some small changes that make me feel we made the right decision.

Boo has started to play with the other kids.

It started when I went to pick him up one day and Boo was tapping on a saucepan with a xylophone stick. Aww, I thought. The awws turned to ahas, however, when I noticed he wasn’t just doing this on his own and randomly. He was copying a little boy (the youngest sibling of one of Sissyboo’s friends) who was beating the living daylights out of a wok on the other side of the room. N smashed his wok. Boo responded by tapping his saucepan. They were both giggling as each took their turn. If I didn’t know better I would say they were developing their own brand of baby morse code, like prisoners of war in solitary confinement. ‘Let’s escape the nursery… Let’s persuade Hermoine to be sick so the girls run to help her and we’ll shimmy out the window.’

And then the other day The Grumposaur went to collect Boo and he saw him passing a toy to another boy who passed it back again and so on. Letting go of things is very hard for Boo. Getting them is such an achievement, and then his brisk reflexes kick in and releasing his grip is hard. We have been working on it, periodically (along with the 1001 other things we are supposed to work on every day) and he is getting better. But to do this passing game with another child is a huge step forwards.

You see the basis of most interpersonal relationships for Boo is like this. Someone puts him in a particular position and expects his to do something. Grab something, move in a particular way, make a particular sound. And then he does it or tries to do it and then he gets inane smiling from accompanying adult, lots of praise and a round of applause. Seriously, he looks for applause after he does most things. (Life is going to be such a disappointment for Boo…) And of course kids don’t clap and aren’t easily impressed. They snatch, they cry or pull faces most of the times. These are far less enticing and rewarding interactions for Boo. But he loves other kids, just as he loves grown-ups. He wants to interact with them too, even if they aren’t going to give him a standing ovation for playing with a pop-up toy.

It’s not like he’s taken up chess or anything, but these small glimpses into a world of play with other kids his own age are priceless. And I hope there are many more to come.


Swing Time. lt’s All About the Letting Go.

It’s been a few weeks since I have written a new post for one of my favourite linkys, Small Steps Amazing Achievements. It’s partly because I haven’t been able to see the wood for the trees lately and partly because Boo hasn’t read the memo and realised that weekly steps in the right direction are good for the blog. Get with the programme, Boo!

And then we went away for two weeks. I had thought that this would mean more therapy, because he would have more time with us. In practice, it meant more travelling, more out and about time, more fun, but not more physio. There’s part of me that feels I’ve let him and another part of me shouting as I typed that, ‘Boo needs a break too, Boot Camp Mummy’.

He did get his physio, but he also got a break. I think he rather liked it. But not as much as he did his new favourite holiday hobby. Swinging.

Playing in the park is something I totally took for granted when I was a kid. We had a rec near my house, which I loved and a garden big enough to house a double swing and a rather optimistically named skyglider.

Fast forward thirty years and Sissyboo loves the huge park near our house. I would have called it an adventure playground when I was young (how times have changed) and we spend a lot of time there, partly on account of our garden being roughly the size of a large envelope stamp.

For Boo, though, as in many aspects of his life, the park is a different beast. It has its excitements, to be sure, but it is also a bit of a minefield. Our park is reasonably well equipped for littlies (small wooden houses to play in, see-saws, baby slides and swings). Boo can’t use any of these things conventionally because he can’t sit independently. But we brave the stares of others and the challenges and take him fairly often and he loves it.

Most of all he loves the swings. Putting him in them and keeping him in them is a bit of a military operation, though. First there is getting him without his legs going rigid. Then there’s getting him into a posturally appropriate seated position. Then you need to support him so that he doesn’t: a) do his finest leaning tower of Boo pose; or b) face plant onto the safety bar.

We can’t let go. He doesn’t mind too much, but we all know it’s not quite the same experience. For him and, to be honest, for us.

And then we went on holiday and the cottage we stayed in had access to a shared small playground. It had a swing, a swing I’d seen before. It’s not a SEN swing, so far as I know (at least, lots of non-SEN kids I know have had them in their gardens), but it is high-sided, and supportive.

We got Boo in and strapped him in. There was a bit of side-leaning, but his posture was OK and he couldn’t fall out. Hang on. He couldn’t fall out. Did you hear that?

He could swing without falling. Without me holding on for dear life. I couldn’t believe it. I pushed him gently. He was OK. No: he wasn’t OK. He was grinning like a loon. He was laughing like even Boo doesn’t normally laugh.

I was standing in front of him and I continued pushing. Before I had time to compute what I’d done, I had let go.

I was pushing my boy in a swing. And he was having a wail of a time. You won’t get the full effect from this photo, but take it from me, if you could have seen his face…well, let’s just say you’d have been staring a pure unadulterated happiness.


And if you could have looked at me. Well you’d have seen the same.

I never want to let you go, Boo. And I will hold you and your sister near and dear always. But sometimes, some day, I need to loosen my grasp. This swing let me do it for a few, short minutes a day. And while I was nervous, these were special moments and I hope the shape of things to come.

And in case you’re wondering. Yes: we’ve ordered one for the garden. It will take up the whole damn space, but it’ll be worth it.