Mrboosmum is only the latest in a long train of nicknames I’ve carried with me over the years. And I rather like it, not least because I gave it to myself rather than it being hurled at me by someone who thought they were being oh so hilarious in the playground.
Actually, considering some of the names people at my bear pit of a high school got called, I got off quite lightly. There were some horribly predictable ones about my appearance (I wore glasses and am no oil painting) but most were about my swottiness. (Yes: that is totally a word.) If ever I had my head out of a book it was because I was talking about one. I have always been a word nerd and knowledge seeker. I always did my homework and more besides.
I have always responded enthusiastically to people who know what they’re talking about telling me things and telling me to do or find out things. To be honest, I think that’s why I’m doing reasonably well in my half marathon training. Give me a programme designed by someone who knows what they’re doing, tell me to do it and I just will. I am no natural runner. I just do what I’m told, deviate from the plan only when I think I have a better idea and job done. It works.
It’s a strategy that has served me well through most of my life. It got me through my degrees and is the backbone of my career. But you know what? As a parent and particularly as Boo’s parent, the parent-cum-therapist every mother of a disabled child is, it has served me badly. Really badly.
Boo’s actual therapists (physio, OT, speech therapist, I could go on…) are always making affectionate jokes about how enthusiastically I do my ‘Mummy homework’. Things get mentioned, I follow-up, research different solutions, make a decision, resource them if needed and get started using them with Boo and report back on how well they work (or not) at the next meeting. Yep. I’m still that swotty 13 year old with a bad perm.
But behind the focused amateur therapist exterior lurks the 13 year old who cried herself to sleep at night sometimes because she worried she wasn’t good enough, smart enough. or pretty enough. Except now there’s a big difference Rather than worrying whether I’ll get the top grades in my GSCEs or ever look less like a frightened deer, I’m worried I’m not good enough for my son.
The stakes have risen astronomically.
I do my homework. I work bloody hard and work poor little Boo hard. I do the programmes we are given, I strive to help him achieve the many goals he is set by therapists at home and in his IEPs. I do it when I really don’t feel like it and come up with the most ridiculous strategies to distract him when he doesn’t. I spend hours researching and resourcing the things therapists advise me to look at when I would rather be watching a DVD or drinking wine. (I have been known to do all three at once sometimes, I must confess.)
But there are never enough hours in the week. And as I’ve written about many times on the blog before, I constantly feel guilty about stuff not done. But the thing that I feel most guilty about is the feeling that not enough therapy has been done.
Why do I feel so bad about this all the time? I’ve been thinking about this a lot lately and have realised it’s quite a heady cocktail I’ve been brewing. Take two shots of Mom guilt, and a generous slug of working Mom guilt, add a splash of lifelong-totally-independent-of-Boo-self-loathing and mix with 3 parts of having absolutely no control over the outcome. I’ve drunk so much of this that I wonder if the hangover will ever leave me.
I can’t rely on old strategies. 13 year old me could devise a revision plan, work hard each day making sure I either understood everything or learned the syllabus by rote when I didn’t and I would get a good grade at the end of it. I got with the programme and got it done.
But Boo is his own person and even though he makes me look like a novice in the determination and hard work stakes we are not in control of what he achieves. It is hard for me to explain how hard that sentence was to write.
We are constantly battling his brain injury, his tight muscles that don’t do what he wants them to and his desire (and mine) for him just to be a kid. To play. To relax. To be my boy. I can’t revise or work our way round these obstacles, and some I wouldn’t want to. They are omnipresent and very, very real.
I look at the fridge which has all the SALT targets that we are supposed to meet by September (a good way to help with dieting, I must say) and I have such confusingly mixed feelings.
Part of me wants to prove the therapist wrong. What you think Boo doesn’t already know the difference between big and small, 10 colours, can demonstrate 2-word understanding, and have at least 6 consonant and all 5 vowel sounds? What you think he can’t use a low-tech communication book? Pah!
The other part of me is crying inside. Maybe I’m wrong. Maybe Boo doesn’t understand words, concepts and the world in the way I think he does. Maybe he doesn’t know these things. Maybe he never will. Maybe I’m wrong and the therapist is right and maybe sentences will be forever beyond his reach. Maybe I’m spending 30 minutes or much longer a day doing SALT stuff and all we’re doing is passing the time.
I don’t know. And I don’t know if we will make these targets by September. That hurts. And my lack of control over whether Boo will be able to achieve these goals or not (no matter how hard we work) is driving me a little crazy.
I just have to keep going and hope for the best. I likely won’t know whether all the work we’re doing has made a material difference to Boo for months or years. I guess I may never know.
Would he get to where he’s going in life if I did none of this? If I just played with my boy as I played with my daughter and ditched the therapy? I don’t know.
I believe in early intervention. It has to be right. People who know what they are talking about say it is essential for the best outcomes. But these people also talk about the limits of Boo’s potential. I must do everything I can for him, but as they are at regular pains to tell me, it may only take us so far.
There is no therapy for the therapist, sadly. Except blogging. But at the moment, even blogging is not enough. Not enough to clear my head or make me feel better. At the end of this week we go on a family holiday for 2 weeks. I am desperate for a break from normal life for a bit, although last year’s holiday was no picnic. Please, please let this one be better.
The question is how do I use that time? Do I take 2 weeks of no appointment and uninterrupted Boo time to go therapytastic and gamble on completely wowing the speech therapist in September after all our hard work? Or do I accept that I could do nothing, take the therapy break lots of tweeps have been suggesting we have, and we might arrive at the same outcome anyway.
The jury’s out for me. But I hope to work it out soon. I’d be very interested to know what you all think.