The dodgy chromosome

So it’s been some time since I talked about Oscar and his needs and where we’re at with his lot in life. I’ve been sitting on writing this down for some time – the whole complexity of it which when I write it down seems to get lost in a quagmire of me sounding tired, angry and well, tired. And that Oscar is getting older and the whole notion of his rights and privacy and so forth.

But much is swimming around in my head at the moment and this seems as good a place as any to dump the detritus.

We’re still dealing with bed wetting and recurrent colds/sore throats. Oscar seems particularly susceptible to the latter and even as the rest of the family finally broke free from various winter ailments Oscar has not completely bounced back.

The bed wetting absolutely does my head it. All that literature that says don’t get angry and don’t make a big deal out of it can go shove its collective wisdom and advice up its own arse because mine is so goddam sick of changing sheets and remaking beds. See. Tired and angry.

A while back when Grover was in hospital w/ severe croup (was that seriously like 18 months ago?) the paediatrician on call was a very genteel English fellow who turned out to also be a clinical geneticist. We finally got around to seeing him a few months back and there is a huge amount of relief in FINALLY having a medical professional acting as an umbrella over all of Oscar’s development and health. Up until now it has been down to whatever hunch or instinctual feel I have coupled with an awesome family GP.

The interesting things that have come from this relationship are:
– that the top of Oscar’s palate isn’t formed properly and go some distance to explaining the speech difficulties, the pitch (which tests my maternal love every single day) and volume (which when the pitch is taking a rest takes the baton and keeps on running) of Oscar’s voice.
– we’re exploring some options with the bed-wetting
– the anxiety/headache matrix
– he’s obese.

This last point was not a surprise but to have a professional say it to you. Out loud. And show you on a graph is all rather confronting. The goal is to keep Oscar around his current weight and that over the next three  y.e.a.r.s. it will all work itself out. For the child that would basically eat from the time he wakes to the time he sleeps can I tell you how exhausting it is constantly coming up with low calorific low GI foods that will stop him asking ‘Ogga eat?’.

But then – get this – the paed did some further research on Chromosome 4 abnormalities and it turns out that within the area on the chromosome Oscar has his repetition is the gene for the propensity to hold weight around your middle. I kid you not. So that is clearly contributing to the situation. Clearly I have the same repetition, it’s just the genetic testing didn’t pick it up. Clearly.

The headache issue is ongoing and very difficult to manage. Sometimes it is a legitimate headache and thankfully quite rarely these days a migraine. The rest of the time it is simply a way of getting out of something he doesn’t want to do at school, in the classroom or at home.

I love that special needs kids technically have low IQs but really they are so much more cluey that the brightest of child sparks.

Oscar’s coming up to the end of Year 5, which means he has one more year of primary school and then we are facing the prospect of high school. Think about a child with various neuroses but who is still quite a resilient creature. Think of a child with a profound speech disability but is known by all in the school community and understood by all in his class because they’ve been together since Year 2. Think of a child safe in his small school setting of just under 300 students. Then contemplate sending that child to a high school of 800+ students and just TRY to stop yourself from developing a drinking habit. No really. Give it a go.

There are a few options:
– two local government high schools (one of which isn’t an option – a belief confirmed by the district head counsellor)
– local Catholic high school (enrollments are shut for his year already and because we’re not Catho’s the chance of us getting him in are ‘very very remote’. Apparently.)
– not local government boys high school (recommended by a few people actually) but several suburbs away,
– Catholic special needs high school.

At the moment the last two are coming in favourites. Can you hear my head exploding?

On top of all of this we have a child well and truly in the grip of early puberty. We’re getting hair ‘down there’ and ‘under there’, we’re getting mood swings, the occasional pimple and did I mention mood swings? God help us when shaving has to start.

At the very core of everything with Oscar is worry. Worry about his health (I have recurring nightmares of him  dying in my arms), worry about his social life and that we are his world, worry about his schooling, worry about what he’ll do as an adult, worry about every single aspect of his life. I have been determined since his diagnosis at birth that expending energy in this department as it was going to do nothing to help him be the best he can be. But every now and then – mainly around times of big change – it rears its ugly head. TaDa!

So what’s so different to those worries with your children who are ‘normal’? I guess the easiest way to explain it is that with your normal kids you hope that you have equipped them with the skills to meet those challenges that come their way while you just.know. that similar challenges to someone like Oscar will just result in spectacular deer in headlight case-studies.

I worry so much about this – ok, going to stop saying the word worry. We have some boys over the road and then two doors down from them is a boy in Felix’s class. Naturally, Felix asks to go over there and I readily let him. But when Oscar asks … I mostly say no. Why? Because of crossing the road by himself (which he can actually do better if you’re not there. I know. I’ve secretly watched him.). Because they’re not there (when  I don’t know if that is the case). And no because I said so. This makes me feel incredibly bad because I’m saying no because I don’t want to inconvenience them. With Oscar. Shocking and shameful. So today I thought no, if he asks to go over I’m going to let him. If it is a problem for them they will say no and he will come back . I have to pay him that.

You see, this brings me to my biggest speed bump. Parenting a special needs child is a complex contradiction of emotions. Fierce love and protection and defence and promotion coupled with sheer exhaustion, frustration, annoyance and crankiness. SO many things about Oscar drive me to a point of insanity. The constant questioning, the tireless sticking his nose in everyone else’s business, the high pitched shrill, the unreliability of day-to-day functioning, the constant questioning, the fussing over the most simple of requests. Ironically much of this is what others find so endearing in him. He is a beautiful, caring, empathetic, funny and inquisitive child. His family is his world and OH THE WOE if all are not accounted for.

So there you have it. The whole ugly love/hate of it all.

I think that covers it. Questions? Anyone? Bueller?