Frustrations!

‘Any infant under the age of five years who has suffered brain damage has cerebral palsy’.  This is what we were told during an initial assessment with the Cerebral Palsy Alliance late last week.

My frustration at hearing this is large and diverse.

I'm frustrated at the health professionals who first diagnosed Dexter with PVL and put in our minds the idea that he may develop CP (remembering that they could neither confirm nor dismiss this potential future development).  If this is the definition, then just tell us out straight.  Don’t hide behind the term ‘maybe’ or ‘could’.

I'm frustrated at the Government who won’t recognise Dexter’s condition as a need for financial assistance, because we don’t have that official diagnosis of CP – we just have a condition that no one knows about or is willing to accept.

I'm frustrated because we can’t get an official diagnosis until between the ages of 18-24 months, only once it is clearly evident that he is not reaching particular milestones.

 

Dexter will be nine months next week.  Typically, a nine month old would be sitting, crawling, rolling, talking, following objects, reaching for objects, playing with toys, bring food to their mouths unaided, starting to stand and potentially even showing signs of walking.  Despite his determination, Dexter is not doing any of those yet.

He loves to sit, but doesn’t have the head control or abdominal strength yet to stabilise himself.  He used to do a commando style shuffle, but got bored with that and so we haven’t seen that for some time now.  He can roll – to his side to let out an enormous fart – and then back again.

But he is not interested in toys, he doesn’t understand the concept of food and self feeding and he doesn’t follow objects.

In other words, he isn’t doing what a typical nine month old is doing.  So why can’t we get that recognition?

As shocking and heart breaking as it will be to receive that diagnosis, I've never wanted a label so much before.

If I could just say, ‘Dexter has CP’ things might be easier.  Maybe people wouldn’t judge or talk behind our backs.  Maybe people would be a bit more understanding.  We could get access to funding to help pay for more treatments.  We could join groups and forums.  We would know what to work on with him.  We would be able to know if he will be able to be mainstreamed when it comes to schooling.  But more importantly, we would know.

For now though, we relish in his smiles and kisses.  We encourage any sound he makes.  We praise him when he lifts his head a couple of centimetres off the floor.  We clap when he sits in his chair and remembers to bring his head forward. 

We celebrate the small things.

We celebrate that the little boy who wouldn’t be able to, does.