Aspergers/Autism/Sensory Integration Chatter #2

Hi girls
I'm a long time BB member but haven't been around for ages as life has been such hard work. We're dealing with the news that our beloved boy is 'on the spectrum'. Some days it feels like a bad dream that I'll wake up from, other days seem to bring acceptance, others anger, despair and so on. I'm sure you'll know what I mean.

We're seeing our paed again in 3 weeks for the treatment/management plan appt. I'm trying to get my head around the sorts of interventions we can consider so I can try to talk vaguely intelligently and ask the right sorts of questions. Has anyone been doing ABA or the rethinkautism program? I'd love some feedback about those if possible. We've been doing OT with a sensory specialist since last July plus some speech. He'll be attending EI at Yooralla instead of 3yo kinder and has inclusion support at childcare. We're also seeing the head of the children's sleep unit at Monash for his sleep (or lack thereof :wall:) and finally getting somewhere with that. Hopefully more sleep will lead to greater success with his interventions. :pray:

I'll go back and read more of the previous posts so I can catch up on you and your stories. I'd love to be a part of a supportive group like BB again.

Thanks!

Hi blackbird :hug: welcome.

We don't move very fast in this thread, but its a good place to come for understanding and support. We do not do ABA, only because I don't think it would help Matilda where she is. We are booked in for doing something called RDI, you can have a good google about it ;). Our paed explained that there were 3 basic areas for behaviour, one was ABA, one was floortime (which is an OT based emotional regulation sort of thing) and one was RDI. There were other things out there, but these are the 3 basic ones. We are doing RDI because we've been doing OT based emotional regulation for a while and thought we'd try something else at the same time. Its basically teaching the parents how to help develop the child relationally.

Sleep is a major thing for most kids "on the spectrum". This week its taken Matilda 2 hours to get to bed everynight... its very frustrating as a parent, but apparently very very normal for our superkids.

I'm up too early, but I will come back again soon.... today we go to the urologist to find out about the ultrasound yesterday.... from my eyes, her kidney is not looking too good, but we'll see what she says.

Hey Blackbird! Welcome to our nutty corner of the woods.

After the last yukky few weeks of the year, xp and I have decided to 'divide and conquer' the kids. He takes DS for a few days to a week whilst I have DD, then swap over so we have alone time with both of them. I feel slightly sucky that I couldn't face so many weeks with no kinder and the both of them together by myself :redface:. But then again we all enjoy the break.

I'm really feeling conflicted (or something, too hot to think) - poor DD. She isn't sensory and was a pretty Zen baby....but...well...I can't help but be sad she has picked up the 'bad' side of DS and his tanties and anxiety. She is nearly 4 and I think quite sick to death of always being in the background. I think her starting kinder herself this year will help, she is getting restless like most of them do at this age and I'm glad she will have something all to herself :shakehead:

Mitch has discovered Star Wars, and it's been a life saver. He found a game xp bought for the wii - Lego Star Wars and although I didn't think he should play it the little fella has negotiated his way though nearly the whole game all on his own (i'm no bloody help!). He could play it for days on end, but he doesn't. It's worked wonders for getting him to do other things (make bed, get dressed) first.

He really achieves something on it - there has been a couple of almighty tanties but once I managed to get him to trust himself and to BREATHE...and think.....and let his head cool down, he actually DOES IT!!! So brilliant for his confidence and it's got to the point that he will put the controls down on his own and 'have a break mum'.

He plays about an hour in the morning and an hour in the afternoon. I know it's probably too long but if anyone argues with me they can kiss my shiny white botty. DD gets time with me, I get time to do stuff and his confidence in himself has grown.

Thankfully a family therapist I pulled into the fray has pointed out my plan to enrol DS in Aikido this year was not the way to go. With him starting school this year she thinks it would be waaaay too much for at least the first year and I totally agree with her.

I'm not talking to him too much about school. He is busting to start but if I give him too much info he tends to build up quite a tight idea of what is supposed to happen and if it doesn't work the way he has imagined it will that's where the trouble starts :o.

Christy - I'm sorry to hear about Matildas kidney, I was positive there wasn't going to be much damage...I still hope it's not too bad. She has been so amazing about it all. Wish you could move to Melb and put her in Mitchell's school. I bet she would love it as much as he does.....and then I can have more of a piece of you! :redface: I go to call you all the time...then something happens - you know the drill :)

Hi Blackbird,

My daughter is 15yrs old she has Cerebral palsy, intellectual disability and autism.

I looked into ABA back when I first got my little girl but found it far to expensive for us to afford. I also found very varied results from people I spoke to about it - people were either extreamly happy or very disapointed in the results from ABA.

Just over 12 months ago I looked into diet based treatment for autism, initially starting GFCF with great results and then we started FAILSAFE/low chemical based diet (which works much faster than GFCF) I have since found out a lot of my daughters autism tendencies are caused by dairy. Every child is different but I was quiet impressed to have results with in 1-2 weeks of starting - some people have had major improvements with in weeks and others, like us, found small but impressive results. We are still on the testing stages (had to put it all on hold for 5 months when my daughter broke her leg which caused a lot of muscle problems). You can find out more info by googling either FAILSAFE or Sue Dengate. There is also a couple of books around which go into more details of the program, which needs to be supervised by a dietician who specialises in the diet.
I personally recommend FAILSAFE, I found GFCF is based around FAILSAFE but the tests you need to get are not as accurate because the foods have to be in the childs system in order to test for them where FAILSAFE can be based around the foods you child already eats.
Feel free to PM me for more details.

Good luck


Sjl

We use the failsafe diet as well most of the time. I find if her behaviours get worse, if I take out preservatives and chemicals out (as well as her allergies) than we can get a handle on things better. Maitlda is allergic to dairy already, so we have that out of our diets as well.

I did failsafe and found that the additive 320 sends him off his face, I have been a bit slack about the other additives since them but am really strict about no 320.

We are off to our 1st OT appt on Thursday, lots of forms to fill out , I think I am expceting a miracle LOL

BB meetup on Friday, I am terrified Riley will meltdown and hit some kid then lose it completely. I am almost tempted to leave him with my dad.

mrsmac - the meet-up is at my place and if anyone dares say anything if Riley has a meltdown they can take themselves somewhere else! We love Riley and I'll be very upset with anyone who dares look askance or makes a comment. I don't think there's many Riley and Lucy's age coming, so there'll hopefully be less provocation.

I'm also blocking off upstairs (where the bedrooms are). If you and Riley need a break, you are welcome to take him up there with some toys to give him some space. I'll make sure the aircon is on. If he's okay outside there's also plenty of space to play.

If there is anything you think would make it more comfortable for Riley and you'd like to bring him, let me know and I'll see what I can do.

Thanks so much Jen, I have left quite a few places in tears with him and I just get scared of what people must think. I am having a tough time atm and feling a bit fragile.
Erin is coming which usually makes things easier so fingers crossed.

I will be there sans kiddies too!!!! So you will have some back up from me, I promise :D

So, how is everyone going?

Today, its hot where we are and the cicadas were up early :rolleyes: Fricken Cicadas!!!!! I now have my super princess all over the place. She woke up flappin' and then couldn't sit down, she just fell over everything and paced for a while. We all sat down to watch a movie in our PJ's and she wandered back & forth in front of the TV.

Thankfully, after getting frustrated with her, I asked her what we could do help her settle down. She said "I think I need the bean bag squish" So we did it, and then I asked her "How many do you think you need?" and she said "3". So we did it 3 times and you know what? She's now standing on the back of the lounge balanced on one leg watching the movie with us. I'm happy that she's not pacing anymore, of course I would prefer she sit on the lounge, but *meh* at least we can watch the movie without her pacing in front of us and falling over toys and the table.

i have a woo hoo and i did get soooo excited only for my sister to break my bubble of excitment

murray has gone to bed for 3 nights and woke up dry in underpants and used the potty all day only had a few accidents when out

he has been so much more easier to control but inthe arvos hes still really chanlanging i have no idea where this change has come from but i like it

im hoping hes ok when we head home tho

but i have a big queastion

Teeth Grinding how do i stop him from constintly grinding them he even does it in his sleep i was told to use a mouth gaurd but im sure it would just get chewed to bits

Hi all, so sorry i haven't dropped in in a while..for some reason BB wouldn't let me post in forums?? Seems to be working today so figured i'd update ;)

Thanks to Lulu, Christy...and ummmmm whoever else gave me info about claiming centrelink carers allowance...we have a follow up appointment for Ethan next month so will ask the dr. to fill out the claim forms then.

Ethan has his assessment with EI next week WOOOHOO looking forward to getting the ball rolling there. I've been looking into starting a sensory diet with him, i think a lot of his behaviour/hyperness/stimming is because of sensory processing issues so hopefully the diet will help.

Today has been a crappy day :wall: poor Dh was up last night with a spewy bug which means its only a matter of time before the rest of us get it and ethan always goes feral when he's sick. We're off to a wedding next week so am praying we're all ok by then:pray:
Ethan hasn't been having his day sleeps lately which means he's absolutely cranky,feral and yuck by 3pm. I just lost my lolly with him and put him into bed in a vain hope that he'll sleep but i doubt it. He has been constantly hitting,pushing and screaming at his little brother. Some days its literally every 5 minutes that i'm telling him not to hit. By the end of the day i'm so exhausted from repeating myself:wall:
And to top it off i've got a touch of mastitis! I must have slept on my booby (dam sensitive breasts) which caused a nasty big lump. Yesterday i felt terrible, with fever and overal yucky flu like symptoms. I was able to get a little nap while the boys were resting which was nice. The lumps still there today. Not as big but still there. I've been offering DS2 more feeds on that booby and gently massaging the lump..all the right things and i'm starting to feel a bit better, still bloody painful though.

Ah well thats life ey' :rolleyes:

Hi ladies, may I say how much I love having this thread to come into and feel "normal".

I think spending the day with Christy and the girls on thursday has really settled me and made me feel so much better. The book is great too- The Out of sync child, I am reading it nodding at heaps of things.

Lestyrox- GL with EI, we have an EI unti at the school I teach at and the teacher has been a great resource for me, what a shame you aren't down here.

Christy- wow good on Matilda for being able to say what to do to help her, she is such a beautiful little girl, Erin can't wait to see her again.

Hi ladies,
well finally after what seems an eternity my darling boy has now been refered to a unit to assess children with special needs.
We are hoping to find out whether he has aspergers or is just obsessive.
Im hoping to get some idea from you ladies about what is involved and some things i should do to help the assessment etc along.
My new GP has been fantastic and has told me to right a list of his traits etc.
Looking forward to getting to know you all and hopefuly get som answers for my middle man.

Hi tan and welcome to our little corner of the earth :hug:

Well, Matilda's first day back to school tomorrow.... eeeek. I'm working tonight until 2am (here atm :shh:). So I will be tired and probably tearful when dropping her off. It will be great for her to get back into routine, and she has mostly the same kids and same teacher and teachers aide so its all the same as last year except a renovation to the school which she's already seen and marked out her desk etc, so she knows what its going to look like tomorrow too. I'm excited for her, as I think this year will be much better than last year with all her health issues as well.

I have a kindy boy in my class this year who is autistic and thanks to so much help and advice from Christy with regards to DS I had the BEST interview with his mum. She was so relieved to find a teacher who understood and knew about different things (like social stories, communication book) and who wanted to do them. She in turn helped me with things about DS so I think we will have a really mutually beneficial year!
I had to do a pre school test with this little boy and thanks to skills my OT taught me it went really well even though mum said he was stimming when he came in.

Awesome mrsmac, you will be the best teacher for him!! Apparently you are an awesome teacher (from Mrs Powis... ;)). I think you will have a better understanding of him and stimming than a lot of teachers.

Mitch starts tomorrow too and is literally twitching right now. Can't wait to get into some semblance of routine again....