Thursday, October 28, 2010

Achievements in contact & speech - a congratulatory blog!

Last night, after Boogle's dad bathed him, threw him on the bed (because he LOVES that), I came in to say hello.  I could hear the giggling & the "ge-ge-gen" (again) as his dad repeatedly picked him up, and threw him back onto our big soft bed.

I leaned down to give that gorgeous little boy a kiss - he took my hands, pulled me closer & wrapped his arms around my neck.  ACTUALLY hugging me.  ACTUALLY & physically embracing me.  Not just a "head lean" like he normally does.  It's not a HUGE step forward - but sometimes our steps are simply baby steps...

Mind you, he's always been good with contact.  But this was just more active.

His new game (that he made up) is to ask for his dad "Dadadada", take his father by the hand, lead him over to the couch with Dad's back facing the couch and say "Daow" (Down) and then once his dad is sitting down - scrambles onto his lap for BIG hugs & squeezes!! ;)

However, Dad, Mum & Nana are the only 3 people he'll hug.  Faerie gets a kiss on the head/knee/back - but we get the full contact stuff.

His CASA teacher insists that he'll be speaking within 12 months - but I'm not so sure of that.  His dyspraxia keeps him already from pronouncing words properly.  It's not that he can't speak - just that he can't speak well.  He tries so hard.  Monday whilst having a few moments to eat my own breakfast (a crumpet with vegemite) Boogle comes up to me - looks at my plate, looks at my eyes "Mawww Mamamama" and looks at the plate again.  (What a win!!!)  So, what can a mother do but hand over her breakfast to her talking son!! ;)

I'm working F/T contract for 12 weeks to provide more money for our children.  I miss them so much but I want to give catch up a few debts so that we have more money in 2011 - and whilst it won't be much (due to the minimal hourly amount I'm being paid, it's better than a smack in the head with a wet fish!)

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...

Monday, October 11, 2010

Tomorrow, tomorrow, the world starts again tomorrow....

So tomorrow is the final assessment to the diagnosis of 1 Mr B Boogle and also a "is she or isn't she" for a little Miss Wriggle - who HATES sleeping during the day (gee she's 100% different to her brother in this aspect - he loves his sleeps!)

They're going to have a quick "informal" assessment of Miss Wriggle - to tell me if they have any "concerns" or not. I think "concern" is meant to be translated as "most possibly on the ASD Spectrum - but we're not going to say the words until it becomes official! So, I'm nervous for her - apparently it's only 1 in 10 girls who get ASD (so what's the stats for boys then?) Will have to ask more information about this tomorrow.

In Good News Department - Boogle had a few breakthroughs - 2 actually.  Here are the scenarios.

1. Boogle wants to play "Monkey" - he stands on the bed, holds my hands & starts jumping.
Mummy: Boogle, want to play "Monkey"
Boogle: ge-ge-geeee
Mummy: Okay, but you have to sing with me.
Mummy: <singing> One
Boogle: Cawww
Mummy: little Monkey
Boogle: ge-ge-geee
Mummy: jumping on the bed
Boogle: ehhhhh
Mummy: He fell down (down?)
Boogle: dowww
Mummy: And hurt his head
Boogle: (starts waving head from side to side)
Mummy: Mama
Boogle: Mumumumum
Mummy: called the doctor
Boogle: doh-doh
Mummy: and the doctor
Boogle: doh-doh
Mummy: said
Boogle: <freezes & looks straight at my eyes - anticipating the next move>

So, he's copying a LOT more.. YAY!!

Mummy: <holding his cup of warm banana milk>
Boogle: Cu Mooo Ta Mama
Mummy: <squees with joy>

Yup, he did it!! My little boy learnt a sentence we've been trying to teach him for MONTHS!! Sure, rote-learning & all... but hey... LEARNT & SPOKE the sentence without prompting (except for the cup of milk, of course)...

Friday, October 8, 2010

984 steps to acceptance - I think I'm almost there...

So we went for our 3hr interview where the psychologist from TherapyACT asked us a million & 1 questions.  It got really clear, really quickly, that Boogle is that much more different from the rest of the "GV" children.

I am a mother whose son has Autism.

That's not as easy to say as I want it to be.  I want to be able to hold my head high & be ever so brave - to be brave & not shed a tear, not feel remorse or sadness or grief.  But I don't think I'm ready for that yet.  Even now, I'm sitting here, recalling the events of yesterday & I've got tears streaming down my face.

But it IS getting better... I was watching him this morning & the clear voice in my head said "Of course he has Autism.  Doesn't change who he is now, does it? But now there's other people to help... NOW there are things you can do to help him - so get over yourself & just do them!!"

It doesn't change how I feel about Boogle.  It makes me love & appreciate him all the more, really.  Because it's more clear that this is never going to "fix" itself - that clear speech is NOT a few months away - that this is the new reality that's not going to change.

I'm not choosing yesterday as our "DD" - we still don't have that vital piece of paper.  She simply said (when I asked if the Boogle was anywhere near the ballpark) that she had "concerns".  I believe this was her way of opening the door to "yes, he does - we think you're ready to hear that now!"

But I'm booking Boogle into Brindabella Hearing & Speech Centre today - as I know I'll get *that* piece of paper pretty soon.  Actually, pretty soon is Tuesday.  When we go for our final piece of assessment.  When we finally get that piece of paper - I can see it will start to move things along.  But I no longer hope & pray for a "normal" boy anymore. Just that he can a) be the best version of himself that he can be & b)that he'll be able to be self-sufficient in his adult years.  Because the latter scares me more than anything else, ever before.