Aspergers/Autism/Sensory Integration Chatter #4

We've already applied for carers allowance for his global speech delay but they knocked it back the first time, then the CL chick rang me and said she dodgied it to look like I forgot to submit forms so I could redo them. She basically said to tick all the worse boxes because he *just* missed out on the minimum points used to decide yay or nay and she felt we deserved to have it. That was 3wks ago and I havent heard anything since but my online CL says we receive it. We also got a health care card but apparently only certain providers apply the discount rates (and the paed and speechie arent one of them) so we are still out of pocket $$$. Ive got to ring them after christmas and light a fire under their butts. If they knock it back again Im going to scream. We're already noticing the tightness of our budget now we pay $130 a fortnight for the speech therapy and we're supposed to fork out more $$$ for a private OT *sigh* I wish the public wait list wasnt so long but even then we move so much we would have to start again in each state and he doesnt have that kind of time to wait.

Better go and dress, we have speech at 9am today. Its looking to be an awesome day (note: sarcasm) the kids are already walking the fine line between the naughty and nice list............

Freya the assessment centre at the Royal Childrens @ Randwick have all the areas publically, you can ask for a referral to them? There is a wait, I'd imagine, but they do all the assessments, and will place him where he needs to go afterwards in the public system. HTH!

Mmmmmmm I woke up sick of course.... why not? Its been a fan-bloody-tastic week anyway *borrows Freya's sarcasm because I'm too cranky to get my own*

Hi all,

On the topic of swimming. Hamish does swimming lessons at the place were lucky enough I work. We actually have one on one lessons for asd kids. Hamish however is n a normal class of up to 4 kids.
He still hates showers and screams the place down and washing his hair is like your worst nightmare, but he can now swim yippee. I must say though it has taken every week for the last 2 years to get there. We off course are now having a setback as he has gone up a grade and now is at the deep end of the pool.
Apparently the water is different down that end and is harder to swim in .. GO figure so we have a weekly meltdown at the pool.

Its also fun and games at home, Lachie just has to look at him and its on, and of course no one is allowed in his room with out his permission and Lachie just invites him self in.
The 2 off them can not be near each other for 5 minutes without a fist fight breaking out. The joys of Lachie throwing tantrums and touching Hamish.

However we had a success today , he had his haircut. It seems we can get it cut at one place and that's it because they put spiderwebs in his hair...
Wishing you all a great Christmas xxx

I hope that everyone had a relatively stress free day yesterday. Both boys had a ball and today im paying for it :(
M go tup and started punching into W at 6am!!!! W then went spax and hit back....and then the melt down....frig me....I seriously have big celebration on day's like today...the aftermath :(

We still have a 4 hour car drive to J man's relop's in Droiune today and then back to inlaws (another hour)...but atelast the beach is close by and we can let them wind down there.
NOw to pack...god I bet I dont do that right either and will have something thrown at me no doubt :shakehead:

sigh.....is vodka at almost 8 to early????

Nope, never too early....

We're okay, treading water... always on the verge of meltdown....

Got the kids kittens from work that we were going to adopt anyway, so that has been a huge hit.

Hope everyone had an awesome New Years, here's to a fabulous 2011!

We spent the weekend (from Thursday to Sunday) camping! Was meant to be until Monday, but the kids had just had enough. Was great to get away.

The Speech Pathologist that did Brendan's Autism Assessment rang yesterday to let me know his report is in the mail and that he's been diagnosed with PDD-NOS. Am feeling relieved that we now have an answer and that we can get better help for him. I'm sad that it had to come to this for him to get help, it shouldn't have to be like that... but anyhoo we are through the other side now and can move forward!

Just thought I'd update :)

Congratulations (ykwim!) for a dx that will get you lots and lots of help!

Pick up your Supermumma showbag at the door, welcome to the club.

ooo a showbag! :lol: :lol: :lol:

I'm hoping the report arrives this week, so I can take it with me Tuesday... we have a speech and OT session :)

are you sorted for the Early Intervention Funding? You need a piece of paper stating the dx of PDD-NOS and send it in - did anyone advise you on this part of it?

Supermumma Showbag info lol

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these contain full size bottles of Vodka, Scotch and Bacardi (since it's summer and all), Bubble Bath, Earmuffs and Henna for maintaining your locks and covering the greys. Also a spare blanket for you to hide under.

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Awesome news Sally!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Well we are stagnating. Centrelink denied our carers allowance claim again so I guess we have tough choices to make. We are struggling even on Dhs wage to afford speech therapy weekly plus all the other various appointments. Centrelink gave us a health care card for him but fat lot of good that does for anything but medication (which we dont have). So it may mean taking Jett out of preschool he loves and the boys out of swimming lessons they love; or just cutting down his therapy and making the fixing process years longer.

So Im at my wits end. Got an appt with a child psych for tomorrow at 5pm. Apparently its a parent/s only appointment but she can stick that up her butt, Im takin the little hellion with me. For $188 she can put up with his crap while we talk.

hahahaha, yeah do that.

Clink just won't grant without a dx. It's not very much anyway...in the sea of the $$$ you have to spend. Maybe rethink going for a spectrum assesment. It's practically free under the mental health plan and if he scores within the right area you will have $12,000 to go towards all the therapy. If he doesn't score high enough, nothing lost.

In the end I went for it (even though I thought DS was borderline) and still not totally convinced its Aspy - wether he is or not remains to be seen but the help we got totally changed our lives.

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are you sorted for the Early Intervention Funding? You need a piece of paper stating the dx of PDD-NOS and send it in - did anyone advise you on this part of it?

Supermumma Showbag info lol

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I'm waiting on the report and paperwork to come yet, I was told over the phone that the report is on it's way. She mentioned a copy had gone to his paed, to DSC and one to me. ATM I know nothing of what we have to do lol.

And that showbag is awesome :D

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Maybe rethink going for a spectrum assesment. It's practically free under the mental health plan and if he scores within the right area you will have $12,000 to go towards all the therapy. If he doesn't score high enough, nothing lost.

In the end I went for it (even though I thought DS was borderline) and still not totally convinced its Aspy - wether he is or not remains to be seen but the help we got totally changed our lives.

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We were referred publicly in May 2010, some paperwork got lost in the mail and he had his assessment in December 2010. So the wait list is not really that long considering. Although we are in WA... but we had to wait a bit longer to wait for a team to come to us to do the assessment, it could have been done sooner if I went to them. It cost us nothing to do it that way.

I had the same attitude as Lulu, it was worth a try.

:hug: Freya x

We had a psych appointment yesterday, parents only. I managed to get an appt within 24hrs of calling a centre called Quirky Kid Psychology. We talked for 1.5hrs and she said everything we described of Ripley, definitely is NOT normal now its just a case of figuring out what 'not normal' it is. She feels he possibly will register on the ADOS test as being a very high functioning autistic but she also wants to do the other test (a spina something?). She even thinks he possibly has ADHD as well. Definately Sensory Processing Disorder so she said to go ahead with OT. So in my eyes $180 well spent because finally someone is listening to us.
So I think our next step is a meet and greet session with Ripley in tow, then the assessments. Only problem is its going to cost us up to $2000. Unless we miraculously find somewhere public without a wicked long waitlist. Anyone here who could give me a head up on some reduced cost or publicly funded assessment options in Sydney? We are only here in Sydney until Sept/Oct, I have no idea at this point where we will be after that and DH is deploying mid year so I really want this all planned out before he leaves so we both can not stress about being up in the air still while he concentrates on coming home in one peice.
The other thing I was thinking of asking on advice of a friend is if they will bill the assessments under a Mental Health Care Plan, separating them into 5 sessions so the cost is completely covered by medicare. Anyone know of this being done?

Freya, Quirky Kids is where Matilda had her ADOS assessment. We took it one step at a time. I felt exactly the same, that someone understood and listened. We couldn't afford everything, but we did the ADOS, got a diagnosis and then got funding to do further testing..... it was better that way and she understood. We did it within a week of our first appointment. We got %75 percent of the ADOS amount back after the diagnosis. Then we got a health care card for Matilda from the diagnosis and the paediatrician set us up so we found funding and had some help through Autism Australia.... everything else was easy to get help for once the ADOS was done.

Hope you don't mind me ducking in here... we had an initial speech pathologist appointment today and she suspects our son is on the spectrum. I had had my suspicions but as he makes eye contact, smiles etc I thought it mustn't be. But she explained how the spectrum is made up of different areas. He has a pretty severe social communication delay so we need to follow up with a pediatrician next to see if we can get a diagnosis, then more speech therapy.

Anyway, I had some questions...

- Has anyone used the book "More Than Words" to help with social communication? What did you think?

- I had booked a hearing test for next week but my son doesn't respond to 'games' etc and wouldn't do any of the speech pathologist's things... so maybe a hearing test would just be inconclusive & a wasteof money? Anyone done one with an ASD child? How did it go?

Thank you!

Anybody out there? I know we dont have a diagnosis yet so I dont really belong here but we're really struggling :(

I'm trying to start researching where to from here, what the journey will entail... anything to keep me busy and feel like I'm a fit parent for the job. My H and I have been fighting, which we dont normally do. We can't seem to understand each other and we're both sad and confused. Today when my son had a head butting breakdown I was more aware of the problems he's having and I just start crying. The blinkers have come off. The hope that he'll start speaking like other children his age any day now is gone. I'm realising all the symptoms he has... they are all coming together now rather than just individual personality traits.

I'm so scared and sad. I want to be able to talk to my son one day. Im grieving the parenting journey I thought I was going to have. I want why questions. I want magical fairytales and fairies in the garden. I hope so, so much that when we start therapy with him he develops in leaps and bounds. Please :pray:

Anyone feel like sharing how they felt in these early days? What helped? How time (and hopefully progress) has changed things?

oh meow *hug* I"m sorry I wasn't able to answer earlier. I don't know how to start, our journey took years, but Matilda's speech was good, just her communication which was bad, if that makes sense.

The grieving process is hard. I mean when does it finish? I think I still go through times when I want my "normal" child. I want to pretend everything is okay and fine, and TBH we have times now where it is. Matilda's communication grew in leaps and bounds with early intervention. It was awesome for her.

Check out Maz's journey: https://www.bellybelly.com.au/forums...d.php?t=106287

our journey is started here: https://www.bellybelly.com.au/forums...d.php?t=106430

Thank you so much! I look forward to reading your journeys!!

It means a lot to read your post... I feel understood. Thank you. :hug: So glad to hear the early intervention helped!

I think my son and I have similar conditions as I had some of the same issues. I had a lot of early intervention and clearly it made a difference as I'm a normal adult (as normal as normal gets... what is normal huh?).

My H and I managed to talk better again and I'm just really looking forward to seeing a pediatrician and getting started now. At the moment, the idea of seeing progress and helping our son is giving me hope and it cheers me up again.