Aspergers/Autism/Sensory Integration Chatter #3

[mrsmac]

I know those meltdowns hun, sometimes R kicks the seat and screams constantly while I am driving, luckily he's behind the passenger seat. He isn't a big consumer like his sisters so not as much hassle at the shops but if he decides he wants something heaven help us!

I like pain killers LOL

[tan32]

Hi Ladies,
I have been sitting in the back seats just reading and thinking. We have Hamish's aspergers assessment tomorrow morning and once again I am stressed to the max about it all. I keep thinking oh what if he has a great day and they say to me what are you talking about?
We have a letter from a pead that we went and saw two to three months ago now, he decided that he wouldn't do a formal assessment and just asked me a million questions, in the end he believes Hamish has mild aspergers and it doesn't seem to stop him from functioning normally.
ARGH this life we lead is not normal.... We have visual charts all around the house, we have to plan and warn and warn again about any changes, I have to drive a certain way home as he becomes agitated if i don't. We fight over wearing socks and jumpers. Every meal is a challenge, he smells everything touches everything and retreats at any loud or unusual noise, we have to go in and flush the toilet for him. We have no friends and when we do make them we constantly argue and then end up with none
He fights with baby brother over everything, and is now starting to hit out............

sorry just wanted to get it all out as its been on my mind all weekend.
I love my boy I just want to help him and I would love it if he could have some friends.

[Lulu]

Hun your pead SUCKS if he wouldn't bother to do a formal assessment. I'm glad you are going ahead with it properly.

I am going through the exact thing when it comes to the hitting out, it's so distressing. It's like he is constantly at warp speed in his brain and always trying to stay in that frenetic state. Such hard work.

MASSIVE hugs to you xoxoxo

[Lulu]

How did the assessment go?

I'm going to win tattslotto and build a spectrum utopia where we can all live. The kids will always be friends, cos that's how superkids roll. We can have wine and whine each night in front of a roaring fire or with feet in the pool depending on the season.

There will be animals, big screen tellies for the Wii/s, quiet, dark rooms for the kids and every single building block every made and the best specialist psych on retainer. The best OT's and specialist nannies as well.

And I'm gonna wear a different T-shirt each day. Today it will say Feck Autism, Feck the Spectrum, Feck SPD.

ggrrr

[Lulu]

just popping in for the first time with the encouragement of lulu...

i still firmly have my head in the sand regarding DDs "quirks" but i wanted to ask
how do you prepare your children for changes in their obsessive behaviours that go with developmental changes? ITMS?

DD HAS to wear a nappy to bed not because she needs it(not all the time any way) but can not cope with just her jammie pants, we have tried going with knickers and jammies but that still is a NO GO and we end in a MASSIVE meltdown for a nappy. im not sure if this is a quirk we should just ride with.. or actively encourage getting rid of the nappy??

I'm not sure hun. What about just knickers? Or a nightie instead?

[tan32]

Argh the frustration continues,

We went for our assessment, rocked up at 8:50am to see a closed sign on the door, our appointment was at 9am. Take a few deep breathes, the lady opens the door and asks if we are here for a joint assessment. We were, well it turns out one of the ladies was sick and wouldn't be turning up... I was furious, ropable in fact. Lucky for them and me, DH is very calm and placid and we went for a walk as we where told the other lady thought our appointment had been canceled all together and was now going to be 15 minutes late....Steam was coming out my ears at this stage. We went for a walk with Hamish and got a drink and a chocolate donut for him as a bribe as he was now becoming quite agitated.
We go back in and the psychiatrist calls us in, she is lovely and gets straight down to business. After our interview she takes Hamish for a separate play.
Then she reports back to us, instead of getting us to come back in at 1pm.

Hamish made no eye contact with her at all, he did not engage in conversation with her , except to tell her what she had to do in the game. He was shown cards with photos of children in different situations with different emotions, he didn't pick one of them.

So her report confirms Hamish has Aspergers, he has many sensitivity issues tactile and sound been the biggest issues. He cannot read emotions or body language and shows no concern for others. He makes very limited eye contact and has poor social skills.....

Well now we sit in limbo land till his other evaluation on Monday. We are hoping that the GP will tick the boxes needed for careers allowance so we can start some sessions with an OT asap. The gp has the letter from the pead and now the psychiatrist.

[Lulu]

wow- did they diagnose after just one appointment?

I suppose they must do it all differently - did you do the CARS? Did they give you a number of where he was at?

DS had 1 initial paed consult, then 4 sessions with a psych in which she tested several different things including IQ and did the CARS, then back to the paed for formal dx, all carers stuff signed...

Did they give you any info on FACSIA funding etc?

[Lulu]

wow- did they diagnose after just one appointment?

I suppose they must do it all differently - did you do the CARS? Did they give you a number of where he was at?

DS had 1 initial paed consult, then 4 sessions with a psych in which she tested several different things including IQ and did the CARS, then back to the paed for formal dx, all carers stuff signed...

Did they give you any info on FACSIA funding etc?

[tan32]

We have one more assessment on Monday with a different person, then they will contact Autism SA who will go to his school and observe him there, then they will report back to us.
He is now booked in for 5 sessions with the psych as he is already on a mental health plan for anxiety and stress....

They must all do it different Lulu. We had an hour and half interview , and then they talked and played with Hamish without us in the room for half an hour. Then we went back in again for another hour. We also had to take in a 15 page questionnaire that they had sent to His teacher and our own 17 page one.
Basically from what I can gather we go back again on Monday and do it all again.

[Lulu]

fark. get ready for the paperwork. Christy and I recommend it be done with a glass of wine or three....

[christy]

Or just a bottle each....

Lulu we did a different assessment to the CARS, but for the life of me I can't remember my own name if it weren't for being my login here . I'm curious about the Asperger's as opposed to Autism... I thought that it had to do with IQ and communication ability... how can they diagnose the difference without those? Matilda has high functioning autism, has a very high IQ but a low communication ability. Thus... Autism as compared to Asperger's. My BIL has Aspergers. He was always able to communicate very well with a huge IQ. I get so confused to all the assessments for what.... some are able to diagnose on a few things but some do the major assessments. I think the major assessments with help with funding... I think you have to do one of them, but the psych maybe so used to it that they fill it in afterwards.... who knows....

Matilda refused to look at or communicate with the psych during her 2 hour long assessment. She talked to the assistant in the office so the psych had to do half the assessment with her receptionist doing it with M. Gah they make life interesting don't they? At least the psychs seem used to it, if they are doing the assessments they must be

[deletedit]

Just reminded about something on another thread ... what are aspie children like with toys?

I thought for years that my daughter was just fussy, practically no toy I bought her she'd play with - and she's been given loads of toys over the years. As a toddler she liked peg puzzles and things you put shapes or letters into place, and a set of alpabet coasters you could arrange into patterns. She also liked blocks that she could arrange into symmetrical patterns (not make houses out of). I got her toy animals, she'd arrange them by colour not play with them. She doesn't seem very interested in computer games, she gives up very easily unless they are pattern matching games like Mahjong or she has some sucker on tap to get her through the game. She likes to play simple board and card games with other people.

But mostly she makes beds for her fluffy toys - her room is STILL full of fluffy toys in beds. I bought a huge amount of lego a few years ago at considerable expense hoping it would interest her - for years it sat there and she wouldn't play with it but now she makes rooms out of it with beds in them for lego people (she makes the people herself out of blocks, like a small block - no face - on top of a rocket nosecone for a skirt, she doesn't like the minifigs) and she has a large cardboard tower for her fuzzles, again mostly beds. When she plays dressup it usually involves beds too. Beds beds beds. You could sum up her 'play' as making patterns, and making beds.

My other kid plays with anything that isn't nailed down, making animals kiss each other, hide in houses, play games, makes them talk to each other, makes them houses to live in. She's given quite a few of her toys names, which is cute. She already tries to make things out of lego. Visiting children tend to have a fit when they see how much lego is in this house and can be very hard to remove from it at the end of the day - my elder daughter gets quite huffy they want to play with her lego not her.

The end result of all this is the huge collection of toys that has been bought for DD#1 over the years have all ended up in DD#2's room (except the lego), and DD#1's room now has a box of barbies she never ever opens except for when she wants to make them beds (which she hasn't done for about 2 years), and all the white fluffy toys, which either live on her bed as decoration or end up tucked into beds around her room. The toyboxes that used to be full of toys are now all made into beds. So I look like a horrible mother who hasn't given any toys to one of my kids.

Edit: DD#1 spends a lot of time drawing. Princesses and beds, mostly, with a smattering of dungeons, fights and graphic murders and torture. Her drawing style hasn't changed much over the last 5 or 6 years.

[tan32]

Hi all,
Well we had our second assessment today and have been given the diagnosis of Aspergers , which is no surprise to us. We just have to wait for the reports now.. Then we will have an appointment with Autism SA and they will come out and talk to us about what they feel Hamish needs. So far we have been told OT sessions and also social groups for him to learn social skills.

Rumpledelf: When Hamish was little he only played with his trains, he had a load of toys but would play for hours on end with his trains. He would make train tracks and line his trains up in oreder. He also loves to draw, he draws bionicles and transformers which are his new interests, oh and scenes from movies he has seen, over and over again.

[mrsmac]

Hugs Tan, you must be feeling mixed emotions right now.
ASPECT are supposed to be really helpful too, not sure if they are national or NSW based though.

[Lulu]

NSW based. I'm not sure yet if there is a national body for Autism. It's Autism Victoria down here.

[tan32]

Hi All.
Well we have had all our assessments done and today I received the first report in the post. To tell you the truth I am waiting for some alone time to have a bit of a cry.
I think seeing it in writing made it hit home. My Little man has Aspergers.
He was assessed using the DSM 1V criteria for Aspergers syndrome.
So now I have in my hot little hands his report from the Psychologist, and next week should receive the other from the speechy.

Tomorrow I have an appointment with the gp to fill out the forms for Careers allowance etc. and also to get a referral to go back to the pead to go on another health plan I think.

I am trying to get this all done as quickly as I can as in 5 weks his teacher is leaving and he will get a new teacher. I want things put in place before she leaves.
Last year Hamish had a detention every week, this year he has not had one.... He has a lovely teacher who gets him now. I am so sad she is leaving us, she has been a blessing.

Anyway I am off now to put all sleeping bodies into beds and head that way myself.

[Lulu]

Maz, Christy and Lulu gather around Tan and put the gold foil "newly diagnosed super mummy" crown on her head, and pass her a showbag containing Bath Oil, ear muffs, a copy of "the out of sync child" and bottles of Vodka, Scotch and Bourbon.

Welcome to the club Tan - it ain't all bad, we promise.

[murraysmum]

hey girls sorry ive been missing in action been so busy with bella and tryin to cope with murray i hardly go near the computer
hes starting daycare again which is a life saver we have regression in toilet training and behaviour which started after bella was born
he has his assment with the lady for early intervention on monday i hope we can finaly get it started only taken awhile