Aspergers/Autism/Sensory Integration Chatter #3

Oh Lilima I don't know. We only had speech for 6 months, which really helped, but it was only a short term service so we're on the wait list for EI, might get in Dec or Jan. OT seems to have finished, we had maybe 3-4 sessions? I'm not any wiser, except that Riv has low registration and emotional sensory issues...I got an email from the OT asking if I had any questions. I'm not sure if it's okay to say 'yeah I do, what did all those appointments mean and what do I do now?'. :lol: Ahhhhhhhhhhh.....I never even got our Paed report...:dunno:

What other options do you think there might be Lilima? What do you think J needs? xo

Sounds like you were able to be a big help Christy! I really hope some of this stuff helps T to find ways to manage.

Lu I bet it was confronting, but I reckon that could be a pretty powerful report in terms of opening doors and finding support. xo

Nelle - I think it's perfectly OK to ask that. I'm so new to all of this, but I've found that I'm constantly asking, asking, asking - probably to the point of pestering, but I figure, that is what his caregivers are being paid for. What does this mean, what happens next, where to go from here, what are his strengths and weaknesses, can they tell me what they think we might expect in the future (even though it's really early days yet), etc, etc.

Christy - you are marvellous. It's fantastic that you are able to offer such support to T.

Lu - I'm sorry that the psych report was so confronting - but hope that it helps to get you guys the support you need. We got E's ADOS assessment report back and I was surprised that he scored so high (he scored 18, the cutoff for classic autism is 12 and the maximum score is 24) - all this time words like 'mild' and 'high functioning' have been used (and I know that high or low functioning refers to IQ and not to spectrum severity, but even so), so I'm now coming to terms with the fact that he may be more severely affected than what we had previously thought. In its own way it's been really confronting too. :hug: to you.

E started his EI program on Wednesday - he's in a two day a week program at Autism Qld. He seems to have gone really well in terms of settling into the routine, although it's probably not dissimilar to what he does at daycare. Apparently he did very well at sitting in his chair during lessons, and concentrated really well, aned when they brought out the mats for sleep time he went straight over to his mat, lay down, and went to sleep. (Why, oh why will he sleep for everyone else on the planet but not for us :cry:). And we had a home visit today by the centre OT, who assessed his motor skills and will give us some strategies to help with our biggest issue - sleep. Although we're thinking of buying a mat like they use at daycare and at the centre and selling his bed LOL - as he won't sleep in his bed once he wakes up in the night and spends most of the night asleep on the couch. He won't settle in our bed - just climbs and wriggles, but as soon as he goes out to the couch, he falls asleep. We're at a point where we don't care where he sleeps, as long as he sleeps.

But so far it seems positive - we were really lucky to have gained a place in the program so quickly, and AQ is a fantastic facility.

Suse - glad you are off to a good start with EI.

Nelle - I would be asking more questions. Also I would be pushing to get back on to speech therapy.

Christy - How did the quirky kid meet up go??

Has anyone accessed "enhanced primary care" funding? I was looking it up for a client at work and realised that kids are able to access it as well. Might help you Nelle with getting further Speech. I can give anyone the link that wants it.

We have a kindy meeting tomorrow, to discuss the plans for next year. Wish us luck!

We've used the enhanced primary care for OT as Matilda's OT isn't covered in the faschia funding. Its been awesome to help out financially. Personally, the $90 a week we pay for OT is full on and I love any help we can get!! I have to work one extra day a week to fund OT. Full on...

We just got back from the kindy assessment, and I must admit, I am a little anxious and a tad upset as I found out more information that I was not aware of.
Apparently when he goes to childcare, he basically just sits in the book corner all day with the same book on his lap. Not actually reading it, just holding it as a comfort. He really doesn't leave the corner except for meals and to go to the toilet.
When he is outside, he does the same behaviour. He just sits on a log, and does not interact and is basically anxious all day. It has just so sad........

We have put in an application for an extra assistant for him for next year. He will not participate unless an adult engages him. and now I think about it, he is a bit like that at home too.

Oh heck - I would really want to know that as a parent. Why wouldn't they say something???

Poor Master J, it's heartbreaking :hug:

I know :( I have jsut been thinking of how sad it must be for him. I am thinking of pulling him out of childcare. IT will be hard, but my parents have said that they can help out more, so that I can still work.

We have asked the director to set up a meeting as we want to know why we were not told about this. He also now has a referral to a child psychiatrist, as we happened to have a pead appt for DD, and basically hijacked her appt to discuss all of what has been going on in the past few weeks.

I really want him out of the childcare. Basically what the EI lady told us (As she observed him there a month ago, but also didn't tell me what was going on till now) was that as he is not distruptive, he just gets left. That's just not on and not fair!

I get the feeling from the kinder that they really don't want him as the kinder teacher keeps telling me it is going to be such a busy group FOR HER. Not my problem. That their own planning problem.

I am also now got the guilts about all my focus being on J, so little Miss E is missing out.

I wonder if I will ever be able to accept this. I just don't think I can

Hi all, sorry I have been flat out settling Hamish into school routine again.

His hand has healed really well, the Dr's were really happy with how well he healed. The major problem for me has been stopping him picking at it
He has sensitivity issues with his hands so would continually pick at the dressings, however it is just about gone and looks like only a little amount of scaring.
However I have noticed his hand seems to be super sensitive to everything at the moment.

This week has seen the return to school, and with it the first day. He walks into class and his seat had been moved. So we had a minor meltdown.
After about 10 minutes of talking to him and trying to point out the positives of his new seating position he said he would give it a go.

He has done really well at school in terms of his work this week, however we normally go down hill fast in the 2nd week for some reason.
So we are trying a reward system for him to see if he can maintain it for a little longer.
On the home front after having a chat to Autism SA we have bought him a puppy. His very own to look after , and the bit he likes the best is it gets to sleep in his room.
The hardest part for him is the social aspect of life, he just doesn't get it. He doesn't see the need to talk to people unless he really wants to, he hates people touching him full stop. He does not like loud noisy busy children apparently they annoy him.
We are still waiting for a meeting with everyone at school to see what assistance they are looking at giving him.
My biggest concern at the moment of course is for his safety and the fact that he blindly does what people tell him to do.

In the meantime I too struggle to find the balance between him and his siblings, a tween girl fast approaching puberty who needs braces and has lax ligaments and a toddler who has a temper , jealous streak and constant ear infections.
The joys of parenthood I guess.. I really wouldn't have it any other way as I love them all just the way they are. Just tried and worn out tonight

Well we've been back to our Paed today...

Today we got some sort of good info....


Officially with his Griffith's testing he's done - none of its says his mental age is 24 months or more - which is what is needed to start the offical testing with his autism...
The test he is going to do is the ADIR interview one

His speech is at the equiv of a 15-18 month old (he will be 30 months/aka 2 1/2 at the end of the month)

I knew it was bad.. but seeing it in writing really hit home.

So yeah - booked back in for 14/02/11 for the next Griffiths test and go from there

In the mean time he has told us that he is officially 'developmentally delayed' and he has 'sensory processing disorder' and that alone he said will help us get EI for him.

He said that they may alone be his problems, but can also possibly be ticks in the autistic box too.

Sigh.. I am exhausted today.. its been a long day!

Girls, I'm sorry but I'm venting again :(

Matilda's been going so well all year.... some minor setbacks....

Friday arvo had a school "celebration" that they put on for the families and some official politicians to accept some grants that the school received. We showed up at 3pm at the end of school to help with everything. I was in order of organising the food, I didn't do it all, just delegated and made a cake.

Well.... the "ceremony" started at 5pm, at 4.45pm Matilda started going flappy. She went happily enough to the ceremony, but afterwards.... she lasted 30 minutes and then started having issues with everything, than at 6.45... well the world ended. She had a huge meltdown whilst everyone else was around. We had to drop everything, pack up and leave. I carried her to the car while she scratched my face and kicked me. Then it took 10 minutes to put her in her seat. I ended up with blood on my face, DH had scratches all down his arm...

We got home and well.... it didn't get much better, at 8.30 she finally fell asleep.

Today she's been an anxious, flappy mess. I hate seeing her like this. She's doing everything she can to keep "high" and stimulated. She's just messy. Of course, I had to work today and she saved the final meltdown for me.

URGH, sometimes, I HATE AUTISM.

Christy love - NEVER be sorry for venting, OK? That's what we're here for and we're just sorry that there's a need to vent in the first place. :hug: I hope things pick up for you all.

What you said about her doing everything she could do remain 'high' resonated with me though - E has had a really nasty flu all week which meant he stayed home from EI. Yesterday he started recovering, and was at that stage of feeling well enough to be bored and cranky, but not well enough to focus on anything constructive. Most of the day was spent with him throwing things around the house (and occasionally hitting myself or his sister with them, randomly though, not deliberately) and generally being horrendous. I'll admit that I lost it at him after getting clocked with his wooden abacus - and had to put him in his room until I calmed down enough to deal with him losing at him. Don't feel proud of myself for losing it but there comes a point, right? I'd been doing so well and staying so patient with him, but a week of no sleep and no breaks really took it out of me.

Anyway, what you said Christy makes a lot of sense, because he was quite determinedly working himself up all day. By end of day he was frightful. Fortunately he slept well and has been good this morning, but was working up again - DP has taken him for a drive to see if he'll go to sleep. But I'm not sure how to handle him when he's so determined to push my (and his own) buttons.

Yesterday I wasn't too fond of Autism myself :(

Christy- How are you going? I hope things have improved since that day. It is just so tough.

I came across agood iphone app. It is called the Time Timer. It is $4.95, and is basically a timer clock, but very visual so that kids can see how much time they have left. we are using it for J, so that he has to participate in activity for a certain length of time, and he can clearly see how much time he has left.

Time timers are awesome, Sue Larkey recommends them for school kids with ASD too.
Is anyone else tired of the constant whirl of OT and speech ? I feel like I am on a roller coaster some days, I need a couple of days off a week just to do all Riley's speech etc- sadly that is not possible :(.

Christy hope your cheesy break is helping!!

I hear you. It seems to be appointment after appointment. Then there is the practising what they are learning in Sp and OT, plus all the other appts...

We also have a time timer clock here that they have now purchased one at childcare that they are using very successfully with J there. $50 though so not cheap

Oooh yeah, I hear ya. I did over 250ks one week. We had 3-4 appointments a week for a long time, basically a full time job with the homeschooling and home therapy.

The social skills group has just finished and now I have an OT that comes to our place and that has eased things a bit........but now I'm running DS to school and back in hour blocks. I'm constantly moving, constantly!

However all this stuff has been working because he is going BRILLIANTLY at school! We started with 30 mins per day, then an hour and as of next week he will go for an entire morning. He is happy to read with the aide and has started doing a little work in the classroom! I'm spinning with happiness. He tears around playing football at recess with all the boys, has made friends and the teacher was telling me all the kids ask where he is and fight to play with him!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

He is so proud of himself. We know there will be a reversal at some stage, but progress is progress.

It's very tiring and it IS a rollercoaster. xoxoxo

Yay Lu

Been a bit absent but there is a whole heap going on at the moment and I am just keeping my head above water really.

Chilly has been suspended again. He goes back today but its not a great start. Last week he was in a fight nearly every day and then on monday he refused to follow a teachers directions and swore at him so they suspended him..... *headdesk* Poor DH is dealing with this drama.

We had an appt at the school for Princess on tuesday. They have moved her into a support unit class, which is great and I know its good for her, and I know its his job to explain it all to us, but I could have done without being told my DD was being put in a class for children with mild intellectual disabilities. I know one day soon we are going to have to face the facts on *something*.. just not sure what it is. And not really all that sure that either of us are ready to hear it.

Been trying to work out where it all went wrong. Where I stuffed up so many times. How I kept getting it wrong and then so very right for bunny. I realised today that Bunny was the only pregnancy where the HG was diagnosed and managed. Could this be because of the HG? I had it in the most extreme way when pg with princess. Lost a good 30-40 kgs. Is that possible? I can't seem to find ANY information on the outcomes for children when the mum had HG. Can find plenty of all the crap that can go wrong for me... figures.

If anyone knows, please let me know. =(

:hug: BR. You didn't stuff anything up. These things are sometimes out of our control.

And boy don't I know that one today. Freakin over it. DP's on late shifts all week, and won't get home until 9:30 each night. Neither kid slept all weekend, and this morning's meltdown (one of many) resulted in Euan throwing his wooden chair which landed on my big toe - if it's not broken it bloody well feels like it. I'm just getting really over it. He's been doing really really well (he's been doing wees on the toilet for the first time ever, he's been singing songs the whole way through - big, big stuff for him), but one little thing goes out of alignment for him and the switch is sudden. We try to deal with it calmly and consistently, but it's bloody hard when DP and I are actually physically getting hurt. Kinda embarrassing really, getting beaten up by a three year old. And he doesn't realise, or have the capacity to realise that's what's happening. Sure, when he hurt my foot today he realised something was wrong, but he can't make the connection, and to be honest, when he's in meltdown mode it's so internal, you could drop a bomb next to him and he wouldn't notice. I got a comment that 'he's got to learn that he can't throw' - well duh! Really? No, we just pat him on the head and tell him he's a good boy and give him a freaking ice-cream whenever he starts flinging objects around the room. But there's a big, big world of difference between teaching him (or trying to teach him) that something isn't appropriate, we can model the right behaviour and do all of the right things, but short of cutting his bloody arms off so that he can't throw things, we can't actually make him understand this, let alone give him the ability to control his emotions and his response to them. That's going to take time - a lot of time. He's not even three for crying out loud.

Anyway, thanks for letting me vent this - sure doesn't change anything, doesn't make my toe hurt any less, won't make this week any less suck-full, but it makes me feel a little bit better. Sort of.