There was a parents evening on Monday of this week at Boo’s nursery. It was the first since he started there in May of last year.
We had several of these for Sissyboo in her 4 and a half years at the same nursery before she started school. They were usually nice but not very important affairs. It was just a space to share stories of her craziness away from the hustle and bustle that usually markled drop-offs and pick-ups. Not much was at stake.
But with Boo? Well, of course, it’s different. The stakes are always higher with him. This could never just be about sharing silly Boo stories. There’s always so much more to talk about other than him just being the lovely little boy he is.
So I went to the meeting a bit nervous. I had lots of questions and a few requests. Why was I nervous? Well two reasons, I guess. I worry all the time about being THAT parent. The demanding one. The one who tends to micromanage. Who won’t just be content to hear that her child ate and slept well and had fun with his friends, as I heard almost every day when I picked Sissyboo up. No: I am the one who goes in at drop-off and shows them how to do stretches properly or his latest exercises and how to put on splints. When I pick him up, I want to know how his physio went, and every few days, will even ask for pictures. I want to know how he played with others. If his seat straps seem to tight. If he kept his glasses on. (Fat chance!) What choice do I have? I have to be THAT parent. Too much is on the line.
And I guess I’m also nervous, because I fear like we may be in a bit of a bubble, just as we are in Boo’s mainstream swimming class. Surely, this can’t go on forever. Surely there will come a point where, despite the equipment secured (chair and standing frame, specialist feeding equipment) and all the sweat and tears issued in the process, and despite the fight for one-to-one (up for review again soon), they will say enough. We can’t cope.
Would this be the day?
No. Ok, breathe…
Parents evening went absolutely fabulously. We got the nerves out of the way quickly. They were coping. I knew that really, but it was good to hear from them. And then I quickly realised that they were nervous, too. They clearly love Boo and have risen to the challenge of caring for a child with additional needs with enthusiasm and compassion that is above and beyond the call of duty. But they wanted to know that I thought they were doing a good job. How could they doubt it? I am so grateful to them. I wish I could tell them how much.
Things aren’t perfect, of course. He needs more one-to-one, although that’s not in their hands. They don’t persist with putting his glasses on his face. No one is quite the drill master I am when it comes to physio. But they try harder than I could ever have hoped and they love him, which is more than any parent can ask for.
We spent 45 minutes talking about Boo. About all he has achieved since moving to the toddler room (the only non-toddling toddler in it). About how his core strength and tone is improving. How is sitting independently for longer and longer times. How determined he is and won’t give up on anything until he’s done it, whether it’s removing pieces from a form board or moving forward a metre on his tummy (however he can – it ain’t easy, I promise) to get to his mirror.
We talked about how much the other children adore him. About how three parents have said that their child’s first word was his name. Wow!
We talked about how the kids and staff are all a little bit lost on days he’s not there or taken away for appointments and how his little friends find his chair and standing frame and call his name as if to summon him back. ‘He’s such a big personality in the room’, his keyworker said. Everyone loves Boo. None of us like it much when he’s not here.’
I couldn’t have asked for more. It was what I needed to hear and so much more than I could ever have expected.
And it marked, I think, a huge achievement all round. For us for battling for the equipment and support he needs and to which he is entitled. (This battle ain’t over, so watch this space.) For the staff who have learned how to do physio and speech and lanaguage exercises, who have learned to tell the difference between Epilim spit-up and proper vomit, and have had to work out how to be especially nifty with allen keys. (Never has such a simple piece of equipment seemed so important since having Boo.)
And, most of all, it’s an achievement for Boo. Whose determination to get on with things and be with his neurotypical pals means that he has settled so well into his room and more than that is thriving.
I’m so proud of you, Boo. So proud.