Aspergers/Autism/Sensory Integration Chatter #3

She mentioned the speech issues but said because he SEEMED to understand what she was saying that it wouldnt be a massive issue.

Not 10min after we left I spent 3/4 of an hour fighting to get him to sit still and eat his lunch then spent another 1/2 hour trying not to kill him while I got scripts filled and did a few errands. I absolutely cannot take him anywhere, not even for a 5min trip to the local shops without all hell breaking loose and she sits there and tells me its lack of effing sleep!?

Im getting a second opinion referral tomorrow. A few people have recommended Dr Neil Ginsberg or Dr Scott Dunlop so I might just make it an open referral and see whomever fits us in first.

Yep he is still having speech therapy even though its practically making us broke. Im going to speak with his speechie tomorrow about it.

:hug: That seems strange. Our speechie wondered if R seemed to understand me just because of my non verbal cues. But if it's a...*doesn't know right word*...if he knows how to nod and smile and make educated guesses from key words, that's not really comprehension. If that makes sense. Surely a paed would know that!

I hope you can get some sort of plan going. Surely she could have suggested something - even if she did think it was about parenting, or sleep, surely she could have given you resources in those areas?

Christy - I'm so glad you guys had a fantastic time at Disneyland!!!

Freya - this paed sounds awful. I hope you find someone who will take your concerns seriously. :hug: I agree with Nelle that apparent comprehension does not necessarily mean they actually comprehend. And even if he can, not being able to effectively communicate is still likely to be a trigger for behavioural issues. This paed sounds like she has little knowledge about spectrum disorders.

I just cant believe that even if she thought he was perfectly normal apart from apparent really bad behaviour that she wouldnt have atleast referred us on to a child psychologist for some behavioural assessment and maybe a plan to combat his issues. They had one at their rooms, completely bulk billed! Im sitting in her office, desperate for help before I lose my mind or my temper, and she blatantly fobbed me off. Im so freaking mad.

Ive sussed out two other paed's, one can get us in by Jan 13th for the same price ($280, sheesh). Might ring and make an appt tomorrow. They are part of an overall centre and have on call speech paths, OTs, psych's and the like. Might be a sight bit better than the tool today.

Good luck Freya, I feel for you with the last moron you saw!
Neil Ginsberg is R's paed from birth, haven't seen him for ages though :( He is a hottie!! (if you like them a bit older! all the mums at school drool at the mention of his name)

Neil Nicol specialises in ASD, he is at Pennant Hills.

We saw Patrick Concanon in Chatswood, and Kimberly O'Brien in Woollara.... there is a centre called "Quirky Kids" there....

Hi everyone,

Another newbie to the thread with a diagnosis of ASD for my DS, who is almost 5. At the moment it is PDD-NOS, but isn't quite that and isn't quite aspie's either, but the child psychiatrist we see said it doesn't really matter, he is definitely on the spectrum, treatment and funding is the same regardless, and often children diagnosed as young as 4/5 develop and change with time.

As much as I have spent the past 6 months expecting this and following my gut in terms of fighting the system (cracked it with the public system and now doing it private), there is still that part of me that is sad about it. I'm lucky that he is very high functioning, and I want to focus on his great points whilst being realistic about his weak ones, but more sad for the struggles that he and I will have to fight together, and how much better than energy could be spent.

And part of me feels almost like a fraud for claiming to have a special needs kids, because of everyone out there who has it so much harder. His teacher who is a good friend, her daughter contracted meningitis at aged 1 and turned into a vegetable basically, I feel like she and parents of downs kids and parents of kids who have autism really do have special needs and deserve the help.. I have a slightly harder than normal kid i feel.. or maybe I feel this way only because so many people only see the good side (like when we stop at their house and they have new toys and pets or babies which DS loves, so he acts normal), and it is only me and the psychiatrist and his teachers who have seen him consistently which know that something isn't right.

Anyway, I'm rambling I guess...

At the moment I'm very worried about funding in a private school for his aide for prep next year. Does anyone know is this funding is federal or state and where I can find out info about how it is allocated? At the moment just from qualifying for funding for delays in gross & fine motor, speech & language etc, he will have an aide to share with another child for critical learning hours, and not every day, which i feel is a recipe for disaster. It isn't the school's fault, it is a tiny private school that funds almost all the aides themselves or from charity donations from within our religious community, but I feel if my child is classified as disabled to receive funding for an aide in a public school they should get just the same amount in a private school. This is the next fight I have on my hands I feel...

I feel so exhausted jut from the diagnosis process, and the journey hasn't even begun.

How do you guys keep it all together?

Welcome Yael - sorry that it's under the circumstances but glad you finally have a dx and can move forward. Even if this time is tinged with grief (totally normal) at the struggles you might face and the worries for the future, remember that you've already been struggling with this, but now you can get much needed support. As for feeling like there are kids in greater need of the funding, I felt the same way at first (especially as it seemed like we were having money thrown at us from all directions), and as DS is high functioning it sometimes does feel like we've got it easy compared to others. But if it wasn't for the funding, DS would not get the services he needs, and I can't deny he gets great benefit from those services.

As for keeping it all together - when I've figured that one out I'll let you know LOL. I sometimes think that the only way I keep it all together is because I know that the alternative is worse. :hug:

Hi guys, by the quietness here I reckon we are all in a similar boat. Christmas with Issues.

We've had an awful 10 days since being back from the US. Its been beyond horrible. I want to forget Christmas and pretend its not happening, return all the presents and give up. Hide in a hole for the next 5 days or so.....

Too bad.... its not her fault. Really, I mean its not her fault that Christmas and everything involved is over stimulating and full of sugar. Its not her fault we went overseas and came home and have to re-establish her groove. Its not her fault that its school holidays and her known routine is non existant. *groan*

Yesterday was better. I set a timer every 2 hours and did OT calming exercises. We only had one meltdown and she didn't physically attack me at all.... whew.... best day so far!!!!

Christy - I am so over it atm aswell...why cant we have a parent and ASD friendly Christmas?? :(

Its 8.30am and we've had 4 melt downs already...apparently I dont love him, im mean, I hate him and he is sorry he's been noisey and rude 5 times over. Even the promise of taking him on a 'date' with me hasn't helped :shakehead: .... im sick of the nastiness from him, the hurtful words about nothing :crying:.
Never fear he'll calm down by lunch, then number 2 starts...tag team look out!!!
M winds up around then and then its hit, punch, kick, scream central until bed time. I can alway's see when he start's....hello tippy toe walking and flappy flap hands and NO NO NO.

I know exactly what started this morning's adventure with W...PIL's came up from Melbourne yesterday, was a good day BUT they unwrapped pressies...and W doesnt understand why we unwrapped them yesterday when the big fat man comes on the 25th..he think's all present's are from the fat man sigh. MIL was pushign for W to make paper plans from the book he recieved for Christmas with the paper that came with it....but in W's eye's paper is for drawing on and it was to much Look's like for sanity we might have to explain the truth on the matter so it doenst waffle him up any more next year...but then if he know's the truth then he'll argue black and blue that there isnt such thing with V and break her heart....auughhhhh I just cant win atm.

So Christy hun...that hole your hiding in, make sure its big enough to fit a few more of us in it and let it be known, I'll bring the vanilla vodka!!!

There's vanilla vodka in that hole? I am sooooo there with you guys.

Is`it only ASD parents who dread school holidays? I feel like we're stagnating here atm.

Oh dear, we have been pretty slack at welcoming the newest members to the Supermum club

*passes out Welcome showbags - 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.

Mitch is going ok so far, getting INTO the school routine went well, but he was starting to lose it and often at school. I'm going to make sure I do some calming excercises every couple of hours too though. Today we are going to the local pool, as that always works a treat. Pity about the cold weather, I have a lovely pool in the backyard....

I SERIOUSLY hate living here, but having the pool has been utterly wonderful. It calms him, gets his energy out and works every one of his muscles. I don't know what I'm going to do when we move back home. Whenever that will be.....I spent my oven money Xmas presents :lol:

I'm refusing to panic, but at the back of my mind I'm really worried about next year. It's going to take AGES to get him back to school routine, new classroom and Aide - I'm desperate to get back to work ASAP :(

Ah so its christmas that is possibly making Ripley so feral. Makes sense. He's had a shocking last couple of days and is in fine rotten form today so Im hoping he keeps that up for the new pediatrician this afternoon.

If anything his attention span (or lack of comprehension) is getting worse. He threw a car at Dh yesterday so got timed out in his room for it. He knows that after that you have to say sorry to the person wronged and hug but yesterday he just wouldnt, or couldnt, say sorry so we ended up having to just let him out of his room otherwise he'd have been in there all day. Its getting very hard to punish him when he doesnt even 'get' it you know? I asked him quite a few times yesterday "Did you throw a car at Daddy?" and he kept saying "No." then telling me Daddy locked him in his room.

Lu - is swimming a good calming exercise for ASD kids? Or is it just water? You could look at investing in one of those inflated pools so you can put it up and down as need arises (obviously winter it would be down). Have you thought about swim lessons? I know the pool Im going to be working for has swim lessons for ASD kids. It is tailored specifically to their special needs and they seem to have alot of fun :)

Hello to everyone else! Hope your hanging in there.