Aspergers/Autism/Sensory Integration Chatter #4

[Olive]

following on from here Aspergers/Autism/Sensory Integration Chatter #3

[christy]

Ah ha! I see, it isn't just us at all.... digs not only a hole, but a HUGE dam which we can all float in and hopefully the kids will wear themselves out while we float with our vodka and cranberry..... (tis the season and all).

Swimming is awesome for ASD kiddos. Their low muscle tone makes it hard, and a different exercise for them rather than for NT kids (neuro typical). BUT it helps work on the core muscles and therefore is relaxing for them.

*sneaks over and grabs a welcome bag for the rum of course.... now.... margaritas anyone?*

[maz]

*maz waves empty glass(s) at christy*..... PLEASE TOP ME UP LADY!!!!!

Since W was little Id run a shower for him, he loves the feel of it pelting him yet HATES the rain I breed weird kids.

We had a lovely date, W and I....not one wig out , happilly licking his double scope chocolate icecream and wearing his Australian flag thongs cause darn it

'they just dont make the correct American stuff here in Australia mum'

Yes my W is now hell bent on everything American. He hate's being an Australian and tell's me we're all dork's which is nothing like all his good American friends ( I have no idea so dont ask) mind you he tell's me this in his fake American accent. Im actually considering buying him an American flag and mkaing him remember all the states ect cause im NASTY!!

*maz skull's last bit on vodka from bottle*
hick...Inow have old lady feet from having them soak in this dame to long now

[Lulu]

Don't forget the NYE lotto draw ladies - if one of us wins we can build ASD utopia.....

[christy]

ohhhhh ASD utopia eh? Lotto.... off to do....

Maz, did W know that we just went to the US? Maybe he cottoned on to us going to Disneyland and the fact that I still have a bit of an American twang.... really, maybe its just me he loves :P

Okay, I'm making some sorbet for Christmas dessert.... cranberry, lime and vodka.... nommmmms

[Freya]

Just a quick pop in, its nearly bedtime for the kids and I have Krispy Kreme donuts calling my name beside a pot of tea.

This paed was not a douche. He took in everything I said while watching Ripley play and interact.

He came to the conclusion that at this point in time he wont diagnose anything other than a severe developmental delay. He assessed him to be more like an 18-24mth old mentally than a 36mth old. Which could account for the speech issues and his behaviours (and the no toilet training). He agreed he does have a few notable ASD tendencies. So the plan of attack for now is regular OT and keeping up with his weekly speech. He wants to see us in June to reassess where he is at (and hopefully miracle of miracles he will be closer to his age capabilities than he is now) and most likely we'll see a child psych for an assessment as well after that. Im happy with that. I understand he wants to give Rip 6 more months to try and get ahead without delving into diagnosing a disorder. I dont think there will be much change but I would love Rip to prove me wrong.
Now I have to find a private OT to fit us in ASAP and the $$$ to pay for it seeing as Centrelink refuse to give us Carer's allowance &$%@.

Its so nice to finally have a weight off my shoulders with some support and a plan in place. Seeing as we dont fit the A/A/S diagnosis at this moment I'll go back to lurking but THANKYOU THANKYOU for all your help, advice and support.

[Yael]

Hey guys,

Another one who is struggling at the moment - today he had issues when I dropped him off (and now I understand why ppl drink before midday), and then the teacher (who is a holiday program fill-in, normally she is just an assistant there during the term), found it hard to get him to listen today, and this afternoon we had to stop at the butchers (which was crowded), and I wanted to throttle him, and then trying to get him to draw a welcome home sign for MIL (who has been away for 6 months and arrives tomorrow morning), would have been easier getting hens teeth.

I am so scared about prep - he hates writing and drawing and all of that.

And I can't relate to his hatred of all art/writing, because when I have to do it with him I feel like shaking him and saying you aren't even trying (which I know isn't fair or true, but it just gets to me sometimes).

Oh, and this morning he spat on his sister, so that was a great morning (and DH has a huge project at work which MUST get finished by midday tomorrow when they shut down, so he hasn't been getting in until 8pm each night, and he is stressed out and isn't much help even when he is home).

So it all makes me want to run away from the ASD, it's too hard... I'm worried I'm going to end up liking (not loving) DD more, because she is just so much easier to handle.

I've been looking into respite care through the council, which i was going to use for help in the afternoon as that's when I find it hard.. I was supposed to get some help in general because of some health issues I have, and then i sent them to diagnosis of aspergers from his psychiatrist, so I was hoping for some extra hours. I had read somewhere you automatically get 3 hours per week with an ASD diagnosis? Is that true... anyway, on the form the wrote 3-4 hours per week, which I know i should be grateful for, but I was like, that's it? 2 complex health issues and 4 hours a week?

But I guess there is nothing I can do about it, unless we want to pay for help privately. The council is $4.90 per hour, and even that will add up with the amount of other medical costs we have for everything. You know when you are over the medicare safety cap in January you have too many medical bills.. I think we are up to $3k this financial year already.

I contacted Autism Victoria to apply for the FACHSIA funding, just waiting for the paperwork.

We have OT weekly (but now a break for holidays), and we have had 6 months off speech, but will start that up again next year when he starts prep.

Having a big lead up to the new australian law of "when you turn 5 and are a big boy starting prep that laws says you aren't allowed dummies anymore"... should be fun... but this oral fixation isn't good, he becomes more and more addicted to it, and it isn't helping his speech issues.

We want to start swimming lessons (oh, and anyone out there with HCF extras, they pay $150 per child per year up to $300 a family for swimming lessons), but I wanted to get him some private ones first, because of his auditoary processing disorder and one bad time at a friends pool (and i was literally 3 steps behind him and he still sank to the bottom and I had to jump in a pull him out), I just want to make sure he is ok before joining a bigger group. But it is $35 for a 1/2 hour private lessons at this place that specifically deals with kids with disabilities, as opposed to $15 for a 1 hr group lesson, and I just don't know if it is worth it, or if i should try and convince my friend who is a swim teacher to do some basics with him at my other friends pool in exchange for some massages.

Has anyone got any advice about class sizes etc for swimming?

We are also getting special graphite orthotics for his toe walking. Applied for some victoria aids & equipment funding. Was supposed to pay the physio $88 to submit it for me, and she told me it is a lot of paperwork etc for her, but my friend is a paed physio and told me it was rubbish, the only paperwork is the form i filled out anyway, plus a like 3 line letter from the physio to accompany it (which she or the GP can write for me), and I can send off the application myself anyway. The only thing I have to do is call the orthotist myself rather than the physio giving me his details to go for the fitting and give him the funding details. So glad she told me as I was about to pay $88 for a 3 line letter & a postage stamp to RCH, and an email to the orthotist. My friend has one she recommend so hopefully it will help, but we won't get it until around March/April apparently. Otherwise they will cast him with plaster casts to stretch out his leg muscles.

Anyway, I had better run and see what the kids are up too... too much quiet for my liking

Hope you are all well

P.S. Freya - if you find an OT who has some special extra training, they can accept mental health care plans for OT sessions. You get them from your GP in 6 appointment blocks, up to 18 for a year. That's what we did, and the OT thought we would be able to claim the initial $350 assessment/report back, but we had no trouble at medicare. Usually we pay $120 per hour, and we are out of pocket with the mental health care plan $10.25 per session. You can still get them even if you have FACHSIA funding, so we are going to use them again next year (another 18), to try and save as much of the other funding for speech and the rest of OT

Otherwise you can get an EPC from your GP which will give you 5 sessions with OT or speech etc.

[Lulu]

Yael - drop the swimming lessons for now. Starting school will be enough for him next year. If you want him to be safe in the water I would suggest just hanging with him in the water yourself to help with confidence over summer.

[Early Kids]

I'd love to get Brendan into swimming, but he hates the water. He can't have a bath with any more than an inch of water.... even then he just turns the little tap and has a shower (we have a joint system). We have been able to get him onto a trampoline, so when we get one of our own that should help us.

The biggest issue we are having atm, is with violence. I posted a separate thread the other day Violence in Children - HELP!

I'm looking in to getting him to a see a child psych. The last time he saw one (excluding for his ASD assessment) was at 3yrs corrected and even then she only sat in the corner taking notes while the paed did the assessment. Before that it was at 2yrs corrected. Going to give the State Child development centre a ring in the new year to see if we can go through there (would be so much easier as he is already on the books there) in the meantime my CHN is having a dig around to see if she can organise one to come to us (wooo even better, but not getting hopes up on that one)

I hope everyone has a lovely Christmas xx

[Freya]

Argh. I made the mistake of talking to Rip's godmother (who is an OT) about the paed appt today and she's got me second guessing the delay diagnosis because she feels he wouldnt benefit from OT because physically he is average or above par with motor skills and weight/height etc; which according to her wouldnt fit with a delay diagnosis.
I just figured the paed was indicating he has a COGNITIVE delay, not a physical delay, which is why he doesnt understand consequences/trouble understanding instructions/physical aggression etc.

So now Im fugging confused.

ETA - Sally.

Yael: I would delay the swim lessons for now. Our class sizes are maximum four to a class for kids over 2 because parents dont participate. Our classes are $13.50 a lesson.

[Yael]

Sorry, wasn't clear about the swimming lessons - i meant to do them over the holidays as something to do, and then not to do lessons again until 2nd or 3rd term when he is more settled so to not overwhelm him. Somebody i know has organised a 1 week (each day) swimming thing in January.

Does anyone think sticking him straight into normal lessons is ok, or should i make sure he has something private first?

[Freya]

Id say delay any sort of lessons entirely until he is settled in school. Stopping and starting lessons in any capacity is wasting your money. Just swim with him as a family and save the lessons for later when you can have continuity.

[Lulu]

but the OT can help witht the sensory side of things, and also teach him ways to cope when he is wigging out. It's not just physical therapy - tell her to put that in her pipe and smoke it!

[Freya]

but the OT can help witht the sensory side of things, and also teach him ways to cope when he is wigging out. It's not just physical therapy - tell her to put that in her pipe and smoke it!

Thats what I thought. We've decided to continue with the OT avenue for now and see what they say after an assessment.

I must say I thanked my lucky stars he was his normal self as opposed to his my-mother-is-crazy-Im-an-angel self he was for his other paed appt. He played with 3 animal figurines and they spent the entire time we talked trying to kill each other with guns and knives. Pleasant listening Not to mention his usual 10000000 decibel volume. They could hear him out in the corridor.

[Lulu]

Hahahaha! Mitch threatened to cut the psychs head off on the second appt. They tend to show off at the first one...

[christy]

YEah.... OT's who specialise in Sensory Integration Disorder are more equipped than others. I have a friend who is an OT and who has said that she is no where near able to do what Matilda's OT does because she's not been trained in it and has no understanding of it, so I suppose different OT's have different understandings of things?

Yael, I have done the intensive weeks at swimming and they have been great. Not geared towards ASD kids, but great for holidays and having a routine.

Psych, Matilda refused to talk to the psych during her assessment. She just never spoke to her, had to have her assistant help her because M would go with her.

I need more wine....

[maz]

I think we've only seen the Psych once and he told her how to do her job and asked her VERY personal quesitons

I understand were your pead is comign from Anna but you know what shiats me about it..you now have to fork out the $$$$ and find the help when he could put it down and you could get the careers allowance to help fund the help and a healthcard card for R so you can get reduced fee's.

We've had the 'services' here who dont agree with our Pead that M is on the spectrum but they havent seen him in 4 months and he's getting worse. One of them rang me the other day and she couldnt believe it was him...yep he was screaming loud as hell and saying NO NO NO over and over whilst flappign his hands.
Ive gone from a tame W (in comparison) to a violent little monster....he headbutted me that hard yesterday a bite through my tongue ..*sigh* and then this morning he stands infront of me, tap's his bum and grunts whilst going red and goes''''ahhhhhhhh'''''. So Anna hun, I hear you and it drives me friggen batty!!

Thank go for sewing is all Ive gotta say...W just stayed up and watched Amazing medical stories on GEM becuase it had the young English man who Austic sophonet and draw's those fantastic buildings aroudn the world....he was totally captued by it. Our Pead has said that W is one but it was amazing to actually see someone who is.

[Early Kids]

We are trying to keep as much normality as possible until school starts, I personally wouldn't be enrolling in new things so soon before school.

We don't get carers for Brendan. Because he was prem his assessments are all based on corrected age, so even though he's delayed he's not *that* delayed when his age is corrected. (overall he fell just above the cut-off for a GDD diagnosis, if they had used his birth age he would have been diagnosed GDD then) It's so stupid and it really pees me off. We were told they wouldn't correct past 2, yet he's nearly 4. The whole prem crap is really starting to get to me now. I'm sick of hearing it, why should he be treated differently now. Sorry still angry with how things have gone down over the past few months.... good news is that if the school can't get funding for an aide they will fund one themselves for the first term. Being kindy he will only go for 2hr45min 4 times a week, so they shouldn't have too many issues *touch wood* once he has transitioned into it. We will be working on a plan for Brendan before school starts.

My main thing right now is getting Brendan in to an ENT to get his grommets done (and probably adenoids and tonsils too) he's been waiting 12 months already and is unlikely to be seen before June next year, despite having a mild/moderate hearing loss ion his left ear and a moderate/severe loss in the right, his overall permanent hearing loss is between 3-5% The system stinks all round and we simply cannot afford to go private

Best go to bed I suppose, have to try and get into the spirit of Christmas!!