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Tuesday, 17 November 2015

In which I ponder disability Olympics - when parents compete over whose child is the most disabled

I do not get the disability Olympics.   

I don't mean actual Olympics, special or para or bog standard ordinary, I mean the weird competitive mindset some parents seem to get into when talking about their kid with additional needs, special needs, disabilities, or whatever the PC term is this month.  You know about Overly Proud Parenting of Genius Children, right?  The parents with the kids who walked at ten months, were out of nappies at eighteen months, spoke in perfect complete sentences when they were two and could read and write by the time they turned three.  These are the parents who always have freshly washed hair and no dried weetabix handprints on their jeans.  Also an active sex life, tidy home and shoes that match.

Disability Olympics is a kind of distorted reversed version (of the kids end at least) - it's not about how well your child is doing, but completely the opposite.  It's all my child is the most disabled child that there is.  There's that classic oh yes, mine has that too, and also this one upmanship based strategy, often linked to besting anothers achievement in the fields of services or equipment so he's going to get physio/splints/gaiters/wheelchair/bionic legs/personal valet; there's the his doctor said she'd never seen a nose/kidney/white cell count/hair folicle quite that high/low/big/small before tactic.  This shouldn't be confused with the humble brag approach though - usually distinguished by comments such as so I just can't leave him alone for a minute because he hacks my bank account/rearranges the dvds into alphabetical order further broken down by genre/reprogrammes the autocorrect on my phone so it looks like I'm using the wrong their/there/they're.

The calm reasonable big picture part of me wonders if this is (at least partly) about the validation of the carers identity - see how much help/support/bacon my child needs, and I'm the one who says it/sorts it/cooks it for them, therefore the greater their need, the better carer that makes me.  The selfish grumpy bitchy part of me (much more in charge on days like today, in case you hadn't already guessed) grumbles (mostly internally, you'll be relieved to hear) that attendence at a special school is not the holy grail that will automatically mean your child gets all the physio/ot/SALT support that is needed; you as a parent don't gain another halo for every consultant that sees your child; and actually, if your child is in mainstream school with no additional support, and you're able to work, and go out for the odd evening leaving them at home with the teenage daughter from next door as a babysitter then you have no fucking clue what you're talking about.

It's the extremes that people don't see, so maybe when comparing their child to the completely wonderfully ordinary Cousin Fred they think well hang on a minute, he doesn't need any of the faffing that my child does, so obviously my child is a long way away from the average.  Maybe they don't have the opportunity to put it in context.  How about lining up with Cousin Fred on one side and on the other a child with no speech, tube fed, oxygen dependant and a third volume of hospital notes measuring over four inches thick, and then have them pick a side?  

Those parents - the ones who run through a fifteen minute long med routine four times a day; the ones who don't get upset by general anaesthetic anymore because they've seen their child through it so many times now; the ones who know in a glance what kind of day today will be for their child because their body language and facial expression is the only way they communicate - it's those parents that tend to talk it down and then go and get on with it because they're too bloody exhausted to do anything else.

It's those parents - and kids - that remind me it could all be so much harder, and that whatever challenges Smiler faces in the future, they're nothing compared to what others are living with now.  Maybe spotting someone worse off (and I'm trusting you'll know how I mean that) makes me feel my son is closer to the level of that gorgeously ordinary Cousin Fred, and I'm certain Smiler is someone else's worse off too.  It just seems sometimes that the more complex your child is (or life around your child is, by the time you've taken into account the huge amount of admin these kids lives need), the stronger that yearning is to be ordinary.  
So, disability Olympics. Don't get it.

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Rant over. Normal service will resume shortly.

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And then the fun began...

1 comment:

  1. Ah, this hits home. My oldest hit every milestone but speech on target. I felt like a failure of a mom and couldn't stand listening to the Overly Proud Parents brag about how their child was giving dissertations at 18 months when mine pointed and maybe said "ba" for everything until he was nearly three. I realize in retrospect that it probably wasn't bragging on their part, but it felt like it at the time. Now that we know there was a reason our son didn't really speak and now that he has been diagnosed with SPD with an upcoming re-evaluation for Autism on the way, so much makes sense.

    Our son is considered special needs at school (since he gets ST and OT), and while his differences are sometimes very noticeable, he's really not that bad off in the grand scheme of things so some times I feel guilty referring to him as special needs. Oh yes, there are times that I want to hide and cry because my son is having a bad day and it hurts to see him struggling and/or hurting, and I wish he could be like normal kids, but as the most recent doctor he saw pointed out, we are lucky. Our son is affectionate (when he wants to be). He is verbal. You cannot understand much of what he says, but he is talks, a lot. We have no feeding tubes, no special equipment, no fights with insurance (I am in the States), no rare diagnosis that we have to cope with. We are lucky. We have a sweet, caring, highly sensitive, funny, fully functioning son who just happens to have many spectrumy quirks. We have to modify plans sometimes depending on his mood, but that is nothing compared to what other parents go through. My hat is off to those who really have it hard.

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