It wasn’t that I didn’t have any good news last week. I did. But last week was World Cerebral Palsy Day (which took up a lot of my non-parenting/non-working like crazy time) and I couldn’t let my 6 month blogging anniversary pass without comment. Anyway, we all love a freebie, so here’s two Good News Fridays for the price of one.
So what’s been happening with the little Boos?
Well, since there’s been a lot about Mr Boo lately (isn’t there always?) let’s start with the lovely Sissyboo. I have been meaning to write a post about her for a while now. You see, she hasn’t been having an easy time with it recently. While I have been expressing relief and happiness that things are starting to fall into place for Boo in terms of equipment (Piedro Boots, standing frame, specialist seating on order) our home is starting to look more and more like an extension of a hospital or therapy centre. Even though we haven’t yet sat down with her and said explicitly since getting his test results, ‘Your brother has cerebral palsy’, she is no fool. She knows things have changed. That pragmatism has extinguished any glimmer of blind optimism dimly visible 18 months after Boo’s birth.
And boy, it’s hard.
And it’s harder still when you have just moved from reception (a whole lot of play with learning bolted so cleverly you don’t notice it) to a much more structured year 1. And it’s even harder still when your teacher, who is on a phased return after sick leave, is only there for parts of the week and can’t get to know you. And your best friend, who you’ve known since you were six months, is being moved by her parents to a private school which has resulted in lots of ‘My school is great, yours is rubbish and you won’t have any friends when I’m gone’ conversations. I am fond of Sissyboo’s friend, but she has a streak of competitiveness and, dare I say it, meanness, that I find hard to accept and in the long term, I think her moving is probably not a bad thing for Sissyboo.
But of course, it feels like it, because it’s yet another change in something she thought she could be sure of. The poor girl must feel like the tectonic plates of her young life never stop shifting. I feel so sorry for her. We have had disturbed nights in which she woken up sobbing worrying that her brother won’t ever play football or crying that she has lots of friend and why is her best friend being mean to her. It’s been so hard. She has lost confidence in her reading, her maths (never a particular strong point) and all sorts of out-of-school activities (swimming, riding her bike).
I phoned her teacher about it. She sounded so embattled and confrontational (there have been a few teething problems with the class and she has had a lot of very demanding parents being quite rude, I think about things in the first few weeks of term). I think she thought I was one of those parents. (I hope I’m not!) But after a few minutes of general chat, I was convinced she didn’t know Sissyboo at all from the things she was saying about her (her reading ‘wasn’t secure’, her maths – not her strong point, admittedly – was ‘poor’) and that she was ‘timid’ probably couldn’t cope with her transition to year one and that was why she was unsettled. This was very far away from her school report in the summer.
I didn’t contradict her, but I did say that I thought there was clearly a difference between how she was at home and school that concerned me. I then said I should update her about things at home (Boo’s diagnosis etc.) and it was clear that there hadn’t been a proper handover after reception because she had no idea. Her tone changed immediately. She said that knowing this made sense of some things Sissyboo had said at school, why something that the teacher obviously thought was innocent and that was said by another child had upset her Sissyboo so much earlier in the week.
I explained that Sissyboo’s world was being knocked off its axis again and when this happens (all too frequently), she has a confidence dive. The teacher took it on board. She has spent time talking to Sissyboo and getting to know her since. She made sure that upcoming assessments of reading and maths were done slightly differently to make her feel less on show (she can be quite confident and extrovert, but on a bad day, when she’s worrying about her brother, she can be reduced to tears by an innocent look).
The result: our happy little girl is coming back. She has gone up 2 reading levels in 3 weeks (thank goodness, she was so bored of reading books at home that were too easy for her, but which she was fluffing at school) and instead of saying she is rubbish and can’t do things, she is happy to give things a go again. To try with her numbers. To go out on her bike at the weekend.
But let me be clear: this isn’t an academic issue for me. Education is very important to me, but I am no hot-houser and all I really want for Sissyboo in educational terms, at this young age, is for her love of learning not to be impacted too much by things at home. I wanted her confidence to be nurtured. I want her to feel happy in a space which is all about her, unlike home, which necessarily has to be a lot about Boo. I know there are going to be lots more bumps in the road, but this feels like a big hump we’ve got over for now. And that’s a very good thing.
As for Boo, well lots of his good news has been posted on the blog already, especially his big news: him happily transferring to the toddler room at his nursery, which has felt like a very big deal this week. In other news, we have finally seen an OT from Social Services. Here in Surrey, we have one OT (health) who does ongoing developmental stuff for educational settings and another, from Social Services, who does equipment for the home (and there’s a fair amount of arguing about who does what between them even though the lines seem relatively clearly drawn).
Our Social Services OT was lovely. She audibly gasped when I showed her how I had to bath Boo. ‘You’re going to end up in hospital yourself with back problems,’ she said. ‘I know,’ I replied, thinking that’s what we’ve been saying for the 8 months we been on the waiting list waiting for help! Anyway, a bath seat is now on order so Boo will be able to sit appropriately supported without me contorting myself, and she’s also order two handrails to go up our stairs to aid us as we carry mini-Hulk up to bed or for his bath. I have to say her concern about the steepness of the steps coming up to the front of our house (too steep a gradient for a health and safety compliant ramp, apparently, if Boo needs a wheelchair), and thoughts about tearing up the drive for a lift were a bit daunting, but it’s good to have someone proactively thinking ahead rather than trying to patch problems of long standing.
And finally in good news, The Grumposaur and I got a night away! I know! This was the first time we’d been away on our own (albeit for less than 24 hours) since before Sissyboo was born nearly 6 years ago. It was a treat paid for by one of his employers for a bunch of work he did for free. We had a lovely time at a fab hotel and spa. I worried about the kids (too much) who were very happy with my parents and sister, but we had a lovely time. I have to say we need more practice at relaxing, and despite our intention to party the night away, we ended up going to bed to get some very much needed shut-eye at 21:30 (I know, how romantic is that?), but it was lovely.
So, those are our good news highlights this week. Hope you’ve had lots of good things in your week. I’d love to read about them in the comments box below.