Here in Booland, the littlest Boo is playing the two steps forward one step back game again. I should be used to it by now, but the new curve ball is the whole physical versus cognitive stand-off we keep facing.
We had back-to-back appointments on Monday: Speech and Language and then physiotherapy. Physio went very well, but then his therapist has seen Boo since 4 weeks before he was supposed to have been born. She knows him better than anyone except us and claims each new development, however minute, as a victory. I usually leave feeling pretty content about things. But SALT was not so good. It is never good. But then its only our third appointment with Boo’s language therapist and, to be honest, lovely though she is, I don’t think she has the measure of him yet. She clearly sees special schools, communication aids, and indistinct (if any) speech as his destiny. If it is, then so be it. But I don’t see that yet. I hear ‘daddy’, a version of his sister’s name, ‘oh dear’, ‘eggs’ (his favourite toy) and ‘yeah’. I see the cogs of cognition turning. He is still so young and he understands (I know it) so much. I’m still happy to wait and see. I have not lost hope.
But I admit, it’s a bit hard to make sense of this new development, of appointments (like the ones we had when he was very little) that focus on what he can’t do rather than what he can and that offset the gains he’s making. So this week, I want to focus my Small Steps post on just one of the amazing achievements of Boo’s big sister over the past few weeks.
Sissyboo is exhausted. She doesn’t know it or at least she won’t admit it to herself. But it’s true. Her eyes may be wide with excitement about Christmas and presents and crafts and sweeties and nativity plays and the end of term, but they are also drooping at the end of a long term full of fun and learning and all the laughs and trials that come with living with her adored little brother.
I’ve written before about how much she’s had to take on this term. More homework. The more structured academic focus of Year 1. A new teacher. Her best friend moving schools. Her brother’s diagnosis. The words ‘cerebral’ and ‘palsy’. Equipment for her brother colonising the house. It’s been hard. And at times her confidence has been really knocked. She had tummy aches before going to school. She started waking at night and wetting the bed. She wanted more cuddles. She asked if her brother was going to die. She lost a little piece of her childhood.
But somehow she’s got through it and with style.
This week she deserves a medal. In fact, she deserves an Equity card. On Monday she did a short performance at the afterschool drama and vocal club she goes to. Today (although I haven’t yet seen it), tomorrow and Friday she is in the school nativity (and has had to learn about 4 songs, Makaton actions and a few lines) and on Friday she is demonstrating all she has learned in her two Friday afterschool dance classes: ballet and modern.
Now before I go on, please rest assured, I’m no pushy or stage mom. Sissyboo does these things either because she wants to (dance was definitely her idea) or, as in the case of drama, because I need an extra hour of childcare on a Monday and I thought it might help her confidence.
You see, Sissyboo can be such an extrovert. I have a video on my phone from when she was 2 dancing down the street and swooshing her skirt while signing ‘I’d do anything’ from Oliver!. But this is the same girl who will cling to my leg when visiting a friend or relative she hasn’t seen for a few weeks (or even days). She can be cripplingly shy or the centre of the party. Sometimes there’s no obvious rhyme or reason to her mood, other than that she’s her mother’s daughter.
I hoped drama would put her on more of an even keel and make her feel more comfortable in different situations. But I haven’t had much sense of how its been going. When I’ve asked her about the club this term I’ve got the usual ‘good’ and little more. So when I went to see her group do a series of vocal and physical warm ups and a short play with songs earlier this week, I didn’t know what to expect. I just wanted her to feel at home. To enjoy herself.
What I saw completely exceeded my expectations. She joined in with the biggest smile on her face. She sang songs loudly, said her couple of lines without looking at her toes. She was really good at it: a mean old troll and then a jolly old pirate.
But more to the point she was happy. Happy and confident. I know that wouldn’t have come naturally to her and I know her lovely teacher must have played a big part in making her feel like this. But it’s also come in large part from Sissyboo herself. From her character. Her love. Her guts.
As we approach the end of term, I see a confident, happy and brilliant little girl who has got through a difficult few months with grace and determination. And on Monday afternoon, a very proud Mummy had a very vivid demonstration of where her brother gets it from.