Tuesday, October 12, 2010

DD is here...

12 October 2010

The day we'll mark Alex's future advancements by.

We've booked him in for Monash for 2011.  He's hopefully going there on Thursdays & Fridays. I'll hear more in the next few days...

I can't believe that we're actually doing this... that this is actually happening. (anyone reading this will see the stages of grief - I'll go through lots of them in 1 day - multiple times per day)... it's just how I work... :(

My "fear girl" was rotten to me when I was walking down the path after the diagnosis towards the car.  She said the most horrible, hurtful things...things like "See - NOW you've finally heard that you gave your son Autism. What did you mess up?" and "Your son has Autism & it's all your fault.  Good one you hopeless b*tch." She's a nasty little vermin. ***Fear Girl - that voice inside your head that tells you negative stuff - well, I have an full working knowledge of mine.... so I can see what a drop kick some messages I tell myself is.....

I know that we've created a supported environment here at home.  He doesn't "look" autistic at home. He gives lots of eye contact, lots of attention... but today at the assessment? I saw the autism huge & foreboding, it was a large monster that I couldn't ignore anymore.   So, whilst I cried when they gave me his assessment - it wasn't too far out of third base for me... I could see it plain as day.  But it hurts, oh god does it hurt.

So, there's assistance available - it's not "much" but it's much better than a kick in the teeth....  When I heard that you get 20 visits that are accepted by Medicare - I'm thinking... ok... 20 visits, which is 1 visit to the speechy & 1 visit to the OT per week for 5 months, every year!! Cool - that will *help* (seeing as we'll probably be doing 2+ visits of both, per week, for 12 months of the year, for about 2 - 3 years. Except NOT... it's 20 visits final - per lifetime.  Which does exactly what?? For goodness sakes, that's like offering to pay for a dinner & only paying for the GST. 

People keep reminding me that things could be worse.  And I love that they're trying to make me feel better - and I get & appreciate it.  They remind me that it could have been worse - that my child could have CF (Cystic Fibrosis - and thus have a maximum of 25 years to live) or cancer or something & instead I have this wonderful little boy who I love & who loves me... yada yada yada....

What I really want/need someone to say to me is "Geez... that sucks. I can understand how crap you must be feeling about it all" and for that to be IT.  Instead of trying to pep me up or make me feel guilty - just to say "Hey, that diagnosis is shit... it sucks. You must be feeling pretty low right now.  I'm here if you need me." Cause all the pep does is make me feel guilty.  (Geez I go on a bit, don't I?!)

Things WILL get better... it will cost us financially (these specialists are not cheap) - but in the end we'll have the best care for Boogle & hopefully he'll be able to care for himself when he's older...

1 comment:

  1. ok - I'll say it: geez, that sucks. and I DO understand that it feels crappy and that you're second guessing every little thing you've done up to this point.
    I can say that because I've been right where you are, almost one year ago. And no amount of gracious platitudes made me feel better.
    So I won't tell you that it gets better. It gets more manageable and the guilt lessens.
    Oh, and I'm here if you need me. We all are.