One thing that never ceases to amaze me in having a child with special needs** is how differently people cope/parent their child. I have no idea why I am surprised, I mean, every person on the planet parents differently and from what I can tell most of us grow up into functioning adults with minimal need for years of therapy. With that in mind why on earth would I be surprised that parents dealing with children with a disability would be any different?
A friend was recently telling me about someone they knew who – from where they were standing – seemed to be in complete denial about their child’s predicament. Here was a child about to start school who was still not talking and not toilet trained and yet the entire extended family is in some bizarre ‘don’t mention the war’ scenario.
Now, for all we know, the family is completely on top of their child’s development but simply chooses not to divulge that aspect of their lives with others. Or perhaps they are in denial and doing absolutely nothing about it except willing the delays away.
Here’s the thing, I am so conflicted when I come to stories like this. I mean, can you imagine the crisis you must be feeling in yourself at maintaining that attitude/facade? But then I think, wow, to be so confident in and of yourself that regardless of what milestones your child is or is not hitting you don’t worry in the form of seeking assessments and pouring money into every form of therapy known to man.
It made me remember when we first told family and friends that Oscar had a rare genetic disorder and that we did not know what his future would be. So many people – including very close family members – were all, ‘OH he’ll be FINE. Just FINE.’ Someone very close to us said, ‘you know, if they’d never done those tests you never would have known and wouldn’t have these worries. HE’LL BE FINE.’
I don’t know about you but I just could not adhere to that attitude. Everything was not fine. He was not fine. He had a system completely compromised by a dodgy chromosome. ALL the research shows that the greater the repetition or deletion of genetic material the more dramatic the impact will be.
The nursing educator of the NICU said to us, ‘now listen to me, if we all had genetic testing I think there’d be some pretty big surprises. You just treat him as you would as if nothing was wrong and when something presents itself as needing to be addressed, you address it just.as.you.would.for.any.child.’
That basically became our modus operandi. We knew the repetition he has on chromosome 4 was large so early intervention was a definite. Early in that process someone noticed his speech sounds and lack of range and mentioned dyspraxia. Way too early to tell they said, but just keep it in mind. Of course it was not that much later we knew he had profound verbal dyspraxia and some motor issues as well. So off we went to speech therapy, off we went to swimming and off we went to kindy gym. And so on and so forth. Rinse and repeat.
Oh sure, did my heart break into a thousand pieces when I’d watch him through the one way mirror at assessments just not completing any of the tasks? My adorable bundle of smiles and smooches and cuddles. Did I just want to scream how unfair it was watching my wee little chap sit in a booster seat with a handful of other kids with special needs in an early intervention program trying to learn the signs to Twinkle Twinkle Little Star? Did I just feel more isolated and alone more than any other time in my life during those early years?
But I knew, I knew that as hard as it was for me to watch. As unbearable as the charting of deficits in my child was, I had to keep going. I had to do everything I could, give him every opportunity to be the best he could be, whatever that was going to be.
My GOD it hurt. It still does. When I see him trying to process what other kids just get straight away. When I see him watching the other kids to know how to act in a particular situation. When I see him just sitting slack-jawed staring vacantly off to nowhere. When he’s stimming.
But denying it. Refusing to see it. Defiantly ignoring the science in front of me? Never.an.option.
Every now and then – as you all know – I fall in a complete heap but I have a rule now. 24 hours. I can have 24 hours to feel miserable. To wallow. To wail. To have a pity party with as many black balloons and streamers as my mind sees fit to imagine. But that’s it.
Because – and this became my benchmark – how is this helping Oscar?
Just because it is hard and it hurts does not give me permission as his parent, his mother, as an adult to just dump it in the too hard basket and ignore it or pretend it does not exist. How does that help Oscar?
At the end of the day Oscar is a 12 year old boy entitled to the same experiences and opportunities as his peer group. He may not be as good at those activities as an able bodied child, he might not enjoy them but hey, there could be absolutely nothing wrong with him and still not be good at it or enjoy it.
All I can think of for children whose parents are making the choice to adhere to the ‘he’s fine, he’ll be fine’ approach is while at the end of the day for them it may all come out in the wash, maybe it won’t. They could be using signing to communicate, they may have real talents in some areas that could have been unlocked. I guess I’m trying to say there are as many doors that could open in a diagnosis as are shut.
* This post originally appeared in a different form in relation to a situation relayed to me by a friend so the first series of comments may seem a bit off-centre or to be talking about something completely different to what appears here. Just, you know, so you don’t think you’re going mad.
** ‘special needs’ being those in your child that are more challenging and drive you even crazier than the standard needs of an offspring