Autism & Adult Services

We are deep in the trenches of planning Finian's transition from school to adult services.

We had another meeting today to try to shuffle things forward an inch or two.

It's tiresome, and built with a matrix of uncertainties and wait-and-see's.  So far, though, no-one has given us the bum's rush out the door.  I'll take my positives where I find them.

All the professionals we meet are lovely.  I have no doubt that they are all fighting in Finian's corner.  It's not the people within the system who turn the road into treacle.  It's the system itself.

Our already complicated lives are further perplexed by having to repeat the same information to multiple teams, multiple times.  I lost track of which team serves what purpose ages ago.  When you're preoccupied with raising a special needs kid, extra layers of red tape tend to get lost in the haze.

The process is arduous and anxiety-laced.  This is bearing in mind that, as supports go, parents are not all placed on a level playing field.

It is with something close to guilt that I'm aware I have the support of a great husband, close friends and dear family.  We can comfortably manage to pay the mortgage and put food on the table.  We have the benefit of education to help us navigate the criss-crossed waterways of disability services.  Finian is as healthy as a grass-fed ox, with no extra conditions tangled up with his autism.  Our older 'kids' are thriving, (almost) independent adults.  

And we find it draining.

I find myself thinking about the parents who start out on the back foot.  The single parents.  The ones who worry about paying the rent.  The ones who sweat at the supermarket checkout in case their card is declined.  The ones who struggle to comprehend the layers of bureaucracy-speak.  The ones managing two (or more) special needs kids.  The ones struggling with their own health issues.  The ones who carry the weight of tube-feeding their children or injecting them with insulin.  The ones who cry themselves to sleep with lonliness.  The ones sporting bald patches where their kid ripped plugs of hair from their scalp.  

I'm not diminishing my own experience, but the balance of good fortune is tipped in favour of some.

While I'm deeply grateful for the supports I have, it's kinda crap knowing that not every special-needs parent has these.  

Unfairness is part of life.  But that doesn't make inequity any easier to bear.