Last week Shannon took Maggie to the hospital for a physical assessment. During the course of this she was informed that Maggie doesn’t have spastic cerebral palsy. She has athetoid cerebral palsy.
Here’s the definition.
The thing is, we always knew she had athetoid cerebral palsy. It’s just that we didn’t realise it existed. Maybe because no-one told us. Not even Maggie’s consultant who, you might think, would know about these things.
As you’ll see from the definition, Maggie will always struggle to eat. In fact, she may never eat. And she’ll never likely talk. Or walk. Or sit unaided.
What can I say about that except that it’s something we always knew and/or suspected? And that it’s fucking horrible.
The other side to this is that, according to the specialist Shannon saw, people with athetoid cerebral palsy are less likely to be mentally damaged. The other side to that is that, as well as the brain damage that caused her cerebral palsy, Maggie also suffered secondary brain damage that is likely to affect her mentally. So she loses on all counts.
However. From that brief assessment – and from what we know about Maggie – they could see that she’s bright and alert and very intelligent. So it’s possible that she’s mentally very slow. Or maybe not so badly damaged. Which is potentially good news.
However. The big problem with that is that she’ll grow ever more frustrated from basically being an intelligent person trapped inside a useless body. She’ll be well aware of her condition and have to deal with the anger, sadness and bitterness that comes with that.
The specialist at the hospital also suggested that Maggie could eventually go into mainstream education, with one-to-one care and support. This pleases us because it fits with everything that Maggie is. We took her to a special school the other week and could tell that she wouldn’t fit in there. She didn’t seem anywhere near as mentally damaged as some of the kids (who were also a lot older). The woman showing us round told us much the same thing, after just casually observing her for a few minutes.
And that’s the thing with Maggie. She likes people and noise and toys and books and lights and activity. Just like any other kid. She responds to all those things just like any other kid. But just a lot slower. Mentally I mean.
She’s currently having speech and language therapy sessions every week and progress has been good. Not with her speech or reaching out and grasping but with her communication and understanding. It’s clear that she doesn’t miss much. And as it’s likely that she’ll never be able to speak or reach, she’ll have to communicate some other way: with her eyes. So that’s what we’re working on. Her therapist tells us they’re making good progress with eye recognition technology and that it’s not beyond possibility that Maggie would be able to use this in the future to help her communicate.
More generally, she’s been quite sick these past few days. Throwing up a lot and being miserable. It could just be a bug that’ll pass soon. Or maybe it’s something else. The upshot is that she’s still not putting on weight and still not sleeping well. Previous to this she was sort of sleeping through the night. I say sleeping through but she woke at around 4am every morning. And that was it. We had to get up with her. At 4am. Every morning.
Alice has had a very bad cough these past few weeks and has also been up all night, howling away. It’s been great fun. However, she’s now on antibiotics so hopefully she’ll be ok soon.
In all, I’d say that life’s not too great at the moment. Me and Shannon have our problems that we – I – need to sort out. The fact that we get no breaks, that we have constant demands on our time and attention, that we get no sleep, that we’re always sad and angry doesn’t help. Plus the fact that there hasn’t been much work on recently and that we’re both here in the house, not getting stuff done, never having the time to get stuff done. That we’re worried and lonely and isolated and falling apart and heading towards poverty – just as all the research shows that happens to families with disabled children. We’re a fucking cliché.