Ugh, Im lurking but Dh is overseas, we just moved interstate and I am frazzled.
We're having a massive drama with the FAHCSIA funding so Ds2 has been out of Speech for 4 weeks and Im def noticing a change. Luckily the therapy service Autism QLD put me onto has worked out a way to treat him while the funding is getting sorted so I dont have to pay oodles out of pocket. He has his OT assessment tomorrow for 2 hours then the speechie will pop in to say hello and sort out a time to see him.
Im starting to wonder if they misdiagnosed him, and he should be HFA instead of Aspergers. Will see what the OT thinks tomorrow. Either way I suppose it doesnt matter in the end.
Sorry you are having such a bad time of it lately Freya.
For those who might be interested, I've made up a folder on my mobile me to store and share autism and sensory information. It can be found here: https://public.me.com/starbuns
Hi, I am not sure that I should be posting here yet but I have a question ...
I have been concerned about DS1's behaviour for a while, he's only just turned three, so I have really just been waiting to see if he grows out of it. He actually seems to be growing into a lot of his behaviours if that makes sense - the older he is getting, the more melt downs he is having, the more he seems to be ignoring me, the more noises he seems to be getting distressed by etc.
I think I need to take him to see a GP. His behaviours have become so stressful that I am not coping very well and I think I need some support or at least some strategies because I don't feel like I am doing a great job at the moment. Is that where I start ... by taking him to a GP?
Also, I want to write down everything - my current concerns and a bit of a timeline of his behaviours and milestones so that I don't forget anything because I never remember half of what I want to say to the doctor when I get there and as soon as he looks at me like I am overreacting, I back down for fear of sounding like an unreasonable over the top parent. If I write it down and know what my concerns are before I go, I think I have a better chance of getting further help. Besides writing the timeline of his milestones and other behaviours, and a list of my current concerns, is there anything else that would be useful for me to write down?
I spent yesterday afternoon looking at Youtube videos of other toddlers diagnosed with Apsergers. I wasn't looking for anything in particular, but I was shocked to realise how many of DS1's behaviours, that I just put down to him being excited, were actually self stimulating. Some of the videos I looked at were like carbon copies of my DS ... I can't believe how similar all of their movements were. That, on top of the other behaviours makes me think he needs some extra assistance and so do I.
He starts pre-prep next year and I am worried that if he doesn't get the support and there are not specific strategies that we are using, he will have some really bad experiences when he starts. He is with me all of the time and I have worked out how to work with him and work him through his meltdowns, but I am worried that other people will push his buttons or ignore him which doesn't fix anything. It just makes him fly into a rage where he can hurt himself or other people.
So any suggestions about who I should see and what I should write down before I go, would be appreciated. Thanks
My son has regressive autism too and we noticed him getting worse and worse. We've moved him to a GFCF diet and we've seen improvement. We've started seeing a naturopath to guide us with blood tests and supplements for the moment but we plan to start the GAPS diet within the next few months. I'm pretty convinced by everything I read that his regressive autism has been caused by a biochemical imbalance in his dietary system. This might seem a bit off course for what you're looking at now but I'd start reading into it if I were you.
We've been doing the diagnosis/treatment thing in the states so I can't help you there. But generally you'll want to get into speech and OT asap.
I hope that helps. All the best for you and your son
I had come across a little bit of info on the dietary stuff while I was looking into behaviours associated with Aspergers. Thanks for that info, I think I might go and have a look at some of the dietary stuff. Have you done dietary stuff with him? Did you follow a plan? Did you find any links between diet and behaviour?
We went GFCF with no real prep or knowledge and after 2 weeks of him barely eating anything and us not really noticing anything we gave him all his gluten and dairy foods again. Then, woah! He was terrible. It felt like he was looking with blurry eyes. You could tell he was disconnected and dazed. He didn't talk, he head butted more and by the end of a couple of weeks he was really sick and constipated.
We went back to GFCF. Had a couple of awful, awful days of die off and then he started to clear up. He had a language explosion at that point and over the the following month he learnt heaps. He started calling us Mummy and Daddy for the first time ever.
Since then he's slowly learnt more but mostly plateaued and had some periods of regression. The recent regressions I have learnt are because he's tired as we just found out he has glandular fever (terrible timing- he's got learning to do!).
I've been learning more and I now understand the chemistry of why GFCF helps some children, and why healing the gut is important. So we're going to get into the GAPS diet. I'll be doing more prep for that as it involves a complete overhaul of our diet and we can't have one off day while his gut is healing or it'll ruin what we've started so I need to be ready to cook all that food. I just bought the book so I'm working through that, will start trying the recipes and making the necessary things from scratch. I hope it works!!
Finally the FAHCSIA funding is done. I got my info package today and our autism advisor will be calling on monday morning for the chat.
Just wondering for anyone in here who has used the HCWA package - did you use your $6000 per year? We get the $12000 til he is 7 which is 3.5yrs from now so we want to make sure it stretches as far as possible. It will mostly be used for OT and speech.
We've actually had a lot of trouble spending all of the money because we didn't get the dx until later when DD was 6, so we've had to spend $6000 this financial year, and have to spend the other $6000 before March 2012 when she turns 7 and the money runs out (because apparently they stop being autistic when they turn 7 and don't need therapy anymore...) - I personally don't think there should be a time limit, just an amount cap. Our problem is that you have to use an approved supplier/therapist, and it is quite a process for them to become registered for it, and as a result there aren't a huge number of them, not here anyway. So what that leads to is huge waiting lists. When you've only got a limited time to use the money like we do, we simply would not get in to see most approved therapists to use the money (particularly as many of the ones in our area only specialise in under 5's which is REALLY helpful - NOT!).
We've honestly used our 12 a year mental health plan and 20 one off medicare rebates more than the money because we can use people that don't have the huge waiting lists. The only people would could get into was Aspect OT, and sometimes it's only once a fortnight because they're too full up for once a week. This has meant that as we rush towards the end of this financial year I've been left with this big chunk of money I can't use for what I need to use it for, so have ended up buying the full 33% worth of resources that I most probably wouldn't have purchased instead just to use up the money. So we got an Ipad and a whole lot of sensory tools/toys, some armoured binoculars - that sort of thing. I'm going to have the same problem next year (9 months to spend $6000 with christmas school holidays in there - most providers wont do therapy during the holidays), so we've already done all the ground work to apply for a springfree trampoline seeing that at $200 a session, we wont be able to see our OT anymore once she turns 7.
DD1 turned 7 this year, and because life this year has been so hard, we missed out on the funding we had... its so sad... I wish I thought things through and got her apps and whatever prior to loosing all the funding.
Well.... I have more good news for everyone. Matilda's birthday was a few Friday's ago and she did not have one meltdown. Generally around the birthday time we have meltdowns daily for a week or two before and a week or two after. She was so good. Not one meltdown!!! She was more flappy, but heh, flappy I can do... it gets frustrating because she is constantly knocking things over and jumping off lounges etc, but I don't mind as long as she isn't screaming!!
Diet. We did an elimination diet with M. We also had allergy and intolerance testing. She is okay with gluten, crazy... but she is seriously affected by dairy. Cows milk dairy. When she was 3 we took her off dairy and within 3 weeks her speech improved dramatically, she started speaking in sentances. When we took her off natural preservatives like salicylites and trialled different things we found that she reacts to fructose in larger quantities. She can only tolerate one serving of fruit a day. Apple juice, organic no added sugar type apple juice makes her loose her mind. We found anything over 75mls of apple juice turns her into someone else, its like a veil has been put over her and her ability to communicate is drastically reduced. BUT something like limonaide she's fine with....
We did elimination diets in order to find what exactly she reacted too as well as doing a detox for heavy metals. There were times when it felt as if she was eating nothing at all or nothing of value, but we did it with a nutritionist/naturopath who was a medical scientist in her previous life.... Once we did this (took around 6 months in total) I have so much more confidence in what foods affect her. It does change... she can tolerate more fruit in one day, but then I just know how to help her control herself or let her be "dreamy" for the rest of the day. Obviously the next day she doesn't have any... its a balance in helping her body cope.
Anywho... she is going so well. We bought a board game out last night, and she was flapping and jumping around while playing it... I was waiting for her to get upset and angry when someone else started winning, or when she got her piece locked down and missed a turn. She did sit on the ground and pout... but that was a normal response!!! She's done so awesome in learning to internally regulate.
She goes to OT weekly as well as doing a program called interactive metronome. The IM has made a huge difference. We used to do speech as well, and she has some had some huge improvements with speech. Her speech pathologist moved and she didn't connect with the new one, but we had gained so much in our understanding of how to do things that we felt able to do it ourselves. Matilda has a high level of vocabulary, its just the issue of getting the words out. Sometimes she's 4 steps ahead of herself and has a hard time stopping and beginning again in order to communicate effectively. School and I have been going so much better with having that key and working with her towards it. Neither of us have many issues with communication now that we understand that and can remind her to go back, its a slow improvement on a daily basis, but there is much less disappointment...
Anywho.... things have been hard since Lulu's memorial for me. Its been hard to get equilibrium again... we are getting there, but slowly....
BellyBelly Life Member - Love all your MCN friends
Jun 2004
The Festival State
3,008
Christy, i'm so sorry you missed out on the funding for Matilda - timing is everything - and i imagine, that all the paperwork to apply would be very timeconsuming - and you can't be doing everything all at once. big hugs - so silly that the cut off is 7
The funding sounds infuriating. I'm sorry a few of you have been having hassles with it. Insurance here stops at 7 years old too. So bizarrely stupid. The diagnosis doesn't just stop?!
With regards to diet... the gluten and casein free diet is not about cutting them out due to an intolerance. You can test as not having celiacs disease and still benefit from cutting out gluten. It's related to gut health. Most autistic children have poor gut health (often displayed through loose stools or constipation). From having a sick gut, they don't digest food properly and some proteins such as gluten and casein are absorbed without being properly broken down. They then act like opiates in the blood stream- causing the hazy, veil behaviour. We have certainly found this to be the case with our son and that's why we've decided to do the GAPS diet as it aims to heal the gut and provide lifelong health and recovery.
We visited an excellent naturopath last week who specialises in autistic children. We were about to start doing all the intolerance and heavy metal testing but from what I can gather now the odds of him showing intolerances and having high levels of toxicity are very high, given his other symptoms of poor gut health. So we're going to assume he has them for now, try the diet, then start the tests in 6 months time or so, to further guide us if we need more support/healing.
The thing about autism is it's a heterogeneous disorder- if you've seen one child with autism then you've seen one child with autism. What works for us, might not work for you so I'm a big believer in us using our motherly instincts and following what speaks to us and resonates about our child. The more information we come across, the easier it is to find that thing.
I think an important distinction is between autism and regressive autism. I don't think they are cut from the same cloth. My son has regressive autism. He wasn't an autistic baby. Something happened. Given that he hasn't had an external injury cause brain damage then an internal cause is the route we're looking into.
meow I agree, the regressive is much differant than birth born autism. M started screaming at 10 days of age... didn't stop until she was 3. She has gotten better over time, and not worse.
I did find that a heap of our improvements happened at the end of detoxes or taking foods out that were not good for her. With her we did an extreme 4 week detox and than a 3 month replacement for gut health. We also did a heavy metal detox. We started it all out 2 weeks after her 3rd birthday and finished around her 4th birthday, which meant we saw an extreme improvement that year.
Hey everyone just wanted to share, I bought a gorgeous little book today called " All Cats have Asperger Syndrome". It's a lovely one to have, and bought a tear to my eye.
I don't know much about autism. You can read & watch you tube til your hearts content, but with the spectrum being such a huge range, its so hard to know what you're actually looking at, unless you've seen it first hand before. & I haven't had much to do autism, other than seeing a couple of kids for 5 minutes at a time & all of them being so different.
Does your ASD child interact with other kids. DS does with kids he knows well only. Siblings & close friends kids, that he see's very regularly. He doesn't interact with the kids at play group, even though he's known them all for about 2 years. He doesn't play with kids at daycare/pre school. He'll either just sit & watch, or he'll do his own thing...
There are so many things pointing towards an ASD, but then there's the fact that he will look you in the eye & he will talk to you & tell you stories. His vocab is very good. & everything you read says an ASD child won't make eye contact.
I'm so confused. I guess I'll know after his assessment on Aug 1.
Hi everyone ... just wondering if I can join in ... my DD had been going to speech since just before 2 years old and she has just been referred off to OT ... we've just had our first session and I have been bombarded with info on Sensory Processing and being referred off to a Paed ... so it seems we are on a journey of discovery ... and my head is spinning! Ex
Registered User
just wanted to share, I bought a gorgeous little book today called " All Cats have Asperger Syndrome". It's a lovely one to have, and bought a tear to my eye.
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