It’s been over a week since we took Tilly to Perth to visit Brainwave (http://www.brainwave.org.uk) and if you’re following my Facebook page or this blog, we’ve been a little bit quiet.
It’s not because the day went badly, quite the opposite to be honest. Their professional input was fantastic and they’ve given us some exercises to try at home and at school, and lots to think about. Probably too much, which is why I’ve been so quiet – my wee, wine-impaired brain has needed time to process everything we discussed.
And if I’m completely honest, I’m a little bit flat as a result of our visit. Not because of Tilly – the difference in her understanding and whole demeanour between this visit and her last one a couple of years ago was amazing! It made us realise how bloody far that little girl has come. Hubby and I shared a lot of little looks that we knew meant “Wow, is she really doing that?!”. We couldn’t help but feel a wave of pride as we watched her not only cope with the therapists pushing her, but positively engaging with them and following their instructions.
But why am I flat? Well, they highlighted some pretty important areas where Tilly needs work. Without getting too technical, some of the challenges she faces every day with her movement (stepping on/off kerbs, going up and down stairs, lack of ability to climb) are as a result of her body always being in extension, rather than flexion. When we move around, we will naturally bend forward a little, or rotate our bodies to look around and help us move – this is called flexion. When Tilly moves from a normal standing position or a simple walk (e.g. if she’s stepping onto a kerb), she leans slightly backwards. This is her in extension. As a result, the sensory input her brain receives (visual, vestibular, proprioceptive) throws her into a bit of a panic, or fight or flight mode. You try walking up the stairs when you’re leaning backwards – for a start you can’t see where you’re going, you feel disorientated and like you’re going to fall backwards. Tilly spends a lot of time in this position!! As we’re not trained in Sensory Integration – nor are any of the therapists she sees (sporadically) – we didn’t notice this and had no idea it was causing SO many of her problems.
And this links into why I feel flat. Throughout Tilly’s life, we have seen a multitude of therapists, doctors, consultants – whatever you want to call them. We’re currently going through another stint of appointment after appointment – we had a visual expert a couple of weeks ago, and have neurology and audiology next week. And the splint she wears on her left foot has suddenly become too tight (my little girl is getting big!!) so I have to get an urgent appointment to see Orthotics. But through so many of these specialists, sadly very few of them have had useful and researched advice or help for us. We thought it was because she was undiagnosed – but since being given her diagnosis last year, it’s made no difference whatsoever. They don’t know what they’re dealing with, and because Tilly is generally a calm and happy little girl, we get a bit of sympathetic chat then sent on our way. They don’t have a text book answer for how to help her so we’re left in the dark, and have to get on with it. But I’ve always known there is so much more that we can do to help her progress, and going to see people like Brainwave confirm this. One of the ladies we saw is an Occupational Therapist (OT) who specialises in Sensory Integration (SI). She was as frustrated as I was that we don’t have an OT who is able to do real SI work with Tilly – by real, I mean a space that is set up with SI equipment that would challenge Tilly, and help her sensory processing system integrate in a more typical way. By unlocking her sensory processing difficulties, it might allow her brain to focus on the things we take for granted – such as communicating!!
I feel flat, frustrated, angry and very very stuck. I know there is a therapy out there that could really help my daughter but I don’t have any access to it. There is an OT who is ‘meant to’ see Tilly at school. So far, in her first year at school (since August 2015) she’s seen her about 4 times? I know she sees other children in the school more frequently but because Tilly is a more difficult and non-textbook case, she mysteriously misses a lot of the appointments she has scheduled with her. I’ve also googled it and the closest OT who specialises in SI is in Perth – for a girl who can get car sick after a few miles, its just too far to travel on a regular basis.
In the meantime, I’m going to try my hardest to fit in the little changes Brainwave have suggested and do what I can. I know her school will help support us too but it doesn’t stop me wondering, what if?
So in the next few days, I’m going to work my frustrated and angry frenzy up into something a bit more productive and start pushing back (again!!) on the therapies we have access to. If I don’t fight for Tilly, who will?
If anyone reading this happens to have any knowledge of Sensory Integration nearer to Edinburgh, then please, please get in touch. We’d love to hear from you – I know that Tilly has so much potential, we just need to find more ways we can help unlock it.