Hello. It’s me. I’ve been very quiet lately, I know. Things have been crazy busy. I mean CRAZY BUSY. With appointments. With work. With my running. (I ran a half marathon yesterday! Yep: I’m surprised, too.) And with the therapy.
Post-holiday I can say that I am well and truly back on the therapy horse that threw me. And all the appointments that stopped as we and seemingly the entire country were on holiday in August have restarted with vengeance. We had three (yes: three!) before 11:00 this morning, as well as three phone calls from OT, one from wheelchair repair and one from early years this afternoon. It’s only Monday and my head is spinning even before we head towards the other two appointments we have later in the week.
I confessed to Boo’s physio this morning that I am feeling like a headless chicken. (She wasn’t surprised.) I told her what you will likely already know. We just can’t keep up with all the programmes and targets. Boo might be able to. But I can’t. I’m done in.
Fortunately, his physio is very sensible and lovely. She told me to just keep doing what I’m doing. I don’t need to do more, she assured me. I do plenty as it is. I just need to keep things ticking over.
Ticking over? I get the sentiment, but it’s not the right metaphor in my view. Well, not unless she had in mind an annoyingly loud clock you sometimes confront in an unfamiliar house, the incessant tick tocking of which keeps you awake at night. Yep: that’s what therapy feels like to me at the moment. Please, please don’t let it feel that way to Boo…
To be honest, I don’t feel like I am keeping things going or ticking over. No: lately I feel as if I am letting things slip by making choices about what to squeeze into our jam-packed days.
Making choices …That sounds good, doesn’t it? It sounds empowering (as in: we’re choosing to focus on walking in his walker this month, rather than rolling you know).
Let me tell you, it doesn’t feel empowering at all. I feel like I am giving up on certain things to prioritise others. If I am choosing things, then I feel that there’s a very strong possibility that I’ll make the wrong choice.
Lately, the biggest choice I’ve had to make is the balance between Boo’s physical and cognitive development. Now, don’t get me wrong. I know full well that the two go together. I understand that we experience knowledge physically as well as intellectually. I also know the mind and language powerfully affects our bodies and how we think about them (without the mind games I played yesterday, my tired old heading for 40 bones couldn’t have run a half marathon, for instance). But when you brain/body connection is disrupted by neurological damage things get more complicated.
For the first year and a half of Boo’s life, we had two things on our mind as his parents: survival and early intervention to help aid his physical development. I wanted to know if he would walk one day and phrases like ‘If he can sit by 2 he’ll walk by 5’ haunted me and pushed me to push him in physio. (He didn’t, by the way, and the later seems ever more elusive as a consequence, but I haven’t given up on it.)
Oddly, Boo’s cognitive development did worry me as much as the gross motor stuff. After all, he smiled at 2 weeks corrected age. He had great eye contact and was super sociable. He babbled at the right age, if somewhat unconventionally. It has always been the case that Boo has loved books and clear as day that he loves being in this world. Even his infantile spasms diagnosis and all the hellish prognoses that followed didn’t shake my faith too much that Boo was bright. That he could learn things. That he would want to learn things. That he would teach me things.
I still believe all of those things. But as Boo gets older, and his physical needs become all the more apparent to others, I see them make assumptions about his brain based on his body. I see people behave as if he doesn’t understand them when they talk to him.
I know they are wrong. OK I think the intricacies of my brief phone conversation with a friend about Syria earlier toady went over his head, but there is nothing I say in a day-to-day domestic context that I don’t think he gets. He responds to requests. He asks for things by looking at them and increasingly by pointing and words. But how can I prove this? How can I show them what I know he knows?
You might say, as some of my family members say, why does it matter? If I believe and know he can understand (and I do) what does it matter if he doesn’t make like the performing seal in clinics to demonstrate that fact outside of an environment he’s comfortable in?
Well of course, on a really fundamental level, it doesn’t matter. Not a jot.
In others, in statementing terms, for example, it matters hugely. It doesn’t take much to evidence Boo’s physical needs: they are usually described as severe in reports and global. But to prove his potential, both physical and especially cognitive seems a Herculean task. If we are to stand a hope in heck’s chance of finding a suitable (let alone ideal) educational environment for Boo long term, we need to be able to show both of these things clearly.
Increasingly in the past month, I have been worried that I have been so focussed on Boo’s physical development and on the many motor milestones not yet and maybe never will be met. But now I am increasingly worried about supporting him in his cognitive milestones in order to ensure Boo can assert his will in the world. Can be heard. Can be seen as a person rather than a person with a disability.
And I have been thinking a lot lately about whether it’s a coincidence (or not) that Boo’s speech and language has developed so much recently. Don’t get me wrong. He is still very delayed in speech. But he is coming on really well lately. His oral motor skills are improving all the time. He can suck. He can blow. He has lots of speech sounds now (most consonants and all vowels) and an increasing (if still small) number of clear and emphatic words. In the last two weeks, we have a totally reliable and determined no. It’s a beautiful sound, let me tell you.
Would he have done this if we hadn’t relaxed on the physio over the summer, I wonder? Or did easing up in one area of his development help him come on in leaps and bounds in another?
Whatever the answer, it’s good news. I know that, of course. But going forward, I just don’t know what balance to strike and what choices to make. Because ultimately, you see, I don’t want to admit there is a choice to be made.
Mind and body … both are important. I don’t want to priortise one at the expense of the other. I’m not yet prepared to give up on any milestone for Boo.
But maybe I’m being unrealistic. Maybe we will have to make choices. Maybe we have to prioritise. That feels like a real weight of responsibility. I just hope we, I, make the right choices. But mostly (I hope not too far in the future) I hope Boo can tell me how he feels about all this himself. I hope he can make and articulate as clearly as I am sure he will be able to these choices for himself.