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.

Thursday, September 23, 2010

Wordless Wednesday

Except this is to say - this is the reason I'm in a funk about Boogle's situation right now... There are animals to be patting all around him, other children interested in these hungry, furry creatures... and he's more interested in his ball & his hat... :(

Wednesday, September 22, 2010

Feeling the love... Part 2

Made a visit to a new friend today.  Pinky & Perky's Mum who has a really great attitude about the work she's undertaking with her boys.

She is someone who has seen it all before and knows the path I'm treading.

She is working hard with her boys - there are charts & illustrations everywhere!!  It's not an easy path, but it is obviously rewarding!

She overloaded my head with information, my bag with paperwork & books and my heart with the care & love she's giving!!

Thanks, I owe you one!

But I hope I can be as good with Alex.

Actually, I know I'll be as good - I've got some *great* role-models in the "Mums of Spectrum Children" field.

Tuesday, September 21, 2010

He's NEVER going to be "normal" - A pity party for 1 - Warning!!!

Oh My God.

It finally just dawned on me - well, not finally, and it's going to happen again & again & again as we go through each stage of life & we're not like "everyone else".

Where my Boogle - who never asked for this - who never did anything wrong - is going to NEVER go through life easily.  Where each baby-step is going to be a milestone... a HUGE achievement in the world & NEVER going to be up to the same level as his peers.

So, right now I'm researching health insurers - to see if we're getting the best deal for our money - to see if I can get more money back from them for using speech therapists & occupational therapists & god knows what else.

My poor darling Boogle - I'm not sure you're ever going to know how different the world is. Shukun & I see him struggle with speech - where he literally "forces" the sound out from his body - and it's not even clear most of the time. Or correct.

Today's favorite sound was "Goww".  It was the sound that explained "What is this?", "What animal is that?" "What noise does that animal make", "This is my interpretation on how to say the name of this animal and or thing", "This is my interpretation of the sounds that animal makes".  And you can see him really, REALLY trying - he watches our mouths for how to sound out the word and he WANTS it soooo bad... WANTS it like a passion & you see the cogs turning and then the sound he comes out with is like a compensation prize for what his mind/body will allow him to make. And there's almost a look of resignation in his eyes.

And I'm angry... I'm angry that my little boy has to suffer this.  I'm angry because apart from loving him, caring for him, helping him, teaching him, showing him, prioritising him... that I can NEVER fix this.  I can NEVER make it go away.  I can NEVER give him that life that I've been waiting my whole life to have with him.

Instead the Universe in its "infinite wisdom" has given my son these issues... and there's nothing I can do to fix it.

I said there were going to be days like this - I wasn't sure that I was meant to post them - but then I remembered what this blog is all about. The good & the bad... the strong & the weak.... the wins & the fails... both are equal... both are raw & healing.

Sunday, September 19, 2010

Feeling the love...

I just wanted to say a quick thank you to those people who are giving me support & love on FB and on their own blogs!

Just a quickie - to let you know that you've brought a happy tear to my eyes...


Festivals - A time for celebration, a time for learning, a time for grieving.

So, this morning Shukun, Boogle, Wriggle & I went to the Eid ul-Fitr festival.  It was to celebrate the end of Ramadan.  The month where fasting is intended to teach & remind Muslims about patience, humility, and spirituality.

And it's here, amongst a crowd of hundreds who are celebrating that month long work, that I feel so alone & really see Boogle again - not just as my son, as my little man who makes my day brighter, but as I compare him to other children his age - where he fits in the world.  Here's where I re-learn my lessons about patience & humility.

I'm ready for the diagnosis now - I'm ready to hear the bad news - because now I've seen it for myself.

There amongst the animals & the dodgem cars & the ride-on ponies - I saw a little boy who was having issues. I watched him as he closely examined his hand slowly opening & closing - something he does a million times per day.  I watched him as he turned his back on these petting goats & concentrated on his ball rather than these animals who were willing to do *anything* for a mouthful of more food from the cups.  I watched him as he was not excited about a pony-ride - not able to understand what was happening as he was led up & down a simple path.

And I grieve for all of these things - of not being able to explain how exciting a horse-ride is, how nicely the goats were behaving or how they were pushing each other over for more food, how fun the dodgem car ride is... of not having the motherhood that so many mothers around me were having.

Apparently this is normal. To grieve & to feel this loss of potential parenting. To have all your parenting dreams smashed because you have to do what you *have* to do - not what you wanted or dreamed about doing.   So, today, like a lot of other days in the future to come... I'm going to allow myself to feel this loss & separation of have versus want.  And get back up on that horse & work harder tomorrow.

Saturday, September 18, 2010

A letter to a Boogle

My darling Boogle,

This blog is now about you, about parenting, about life, about your younger sister, Wriggle, & how she develops & deal with life & also of your Daddy & I, but mostly about dealing with a child on the ASD spectrum.

Cause, my darling boy - you were unfortunately caught in the net of ASD.

And I use the word "unfortunately" rather loosely.

Because for everything that you are - NONE of that is "unfortunate".

You are loving & sweet & kind & funny & gentle (when you want to be) and your tantrums last all of 6 seconds. You're mostly a good sleeper and still have a 2hr afternoon nap (sometimes more, sometimes less), you love food & bananas & juice & books & your bear & Thomas & most of all, your Daddy. You want to learn lots & you want to hear "Good ______" lots more.

You like being rewarded with claps & kisses. You like learning new games. You LOVE being tickled. You love being squeezed till you can't breathe. You love being able to control your world - whether that be automatic doors or lights or opening/closing doors manually - you just want to control it... but it's never a "MUST" control - it's never the be all & end all - you NEVER throw tantrums that last more than 6 seconds.. (have I mentioned that already?)

I see "GV" children who throw these MONSTER tantrums - who slam doors & wail for HOURS - LOUDLY... and I know that's not you. That it's never been you & I hope it never will be you.

You have your negatives... you're speech is immature, you aren't toilet trained (yet), you can't do interactive play or imaginative play... (yet)... and now I can't think of any more...

But you LOVE your toys & your books. You love watching other children play. You squeal with delight when they play around you. You love cuddles & hugs & kisses & raspberry kisses & BIG hugs & rolling on the couch/floor with Daddy or getting up/down on the chair whilst I'm holding Wriggle.

You love banana milk & yoghurt & being able to feed yourself. You love the cats & being able to feed them. You LOVE rides in the car...


I remember when you were about 18 months old - you'd wake at o'god o'clock in the morning - one of us would stumble into your bedroom - you were awake & wanted to be up. Your first word... "Car?" *laughs* We'd say "no car now" and you'd be insistent "Car???" with this little high pitched squeak to the end of the word... You love nothing more than to get in that car & go ANYWHERE.

It hasn't changed & you still love outings.

Friday, September 17, 2010

The Reason for the title of this blog - an introductory post.

Unsung Hero lyrics

You sit in the shadows
You don't complain or criticize
And while the world may see me as a fool
They're not looking through your eyes
No questions asked, you're there when I need you
With a love that inspires me to be everything you deserve

Cause you're my unsung hero
And I know it's not easy to walk in your shoes
Day after day you continue to amaze me
Now I sing this song of love for you
While others long to steal the spotlight
You work your magic quietly
Cause you're not in it for the glory
The love you give comes naturally
I may not have much, but what I have I give to you
And this song that I sing is my gift
And I swear that I mean every word


Now I sing this song of love
For you

I can't listen to this song without crying & thinking of my Boogle. He IS my Unsung Hero. 

The chorus, the verses... it's all completely him. 

My Boogle is a little 3 year old boy who is on the spectrum - we're not sure "where" - we're in the middle of testing right now.  But I wanted to blog his journey – because it’s going to be an interesting ride.
Whether it's PDD-NOS or Aspergers or Autsim - who really knows??  
But we're in the middle of testing.

I've been inspired by other blogging Mum/Mom's whose child is on the spectrum to blog.

And so here it is.  "You're My Unsung Hero"