Aspergers/Autism/Sensory Integration Chatter #3

[maz]

to hard to say babe...shiata brick and al the compost with it!!!!

Know what I find so dame frustrating...the fact that our kids haveto have a 'label' to get any sort of help what so ever.

My pead discribed the difference of autism/aspy to me last week..autism is more non social were aspy is more in your face social...Mateauz is full on in your face/take me home I dont care sort of kid were Wilhelm is the dont touch me/get the fark out of my space kid KWIM?? so in a way yes...M man is showing true traits of aspys

I that something get's sorted quickly for you guy's...friggen rollercoaster crap!!!!

*maz passes flaggon over to Lu*

[mrsmac]

Hugs Lu, the aspy boy in my class does heaps of those things too which confuses me, he doesn't even have any obsessions.
Riley has been throwing hysterical tanties where he punches DD2 if things don't go his way, he is fine with everyone else except her
The OT got him to eat 2 baked beans today but when we got home he siad he wasn't eating them again and ate mashed potato for dinner and refused even chicken.

Pass me the bourbon too- between dealing with my full on sensory seeking aspy at school then coming home to DS I am at the end of my rope.

[Yeddi]

In fact he walked straight up to a group of guys down the main street (one of them had a snake!), puts out his hand and said "Hi, I'm Mitch, and that's my dad over there, can I see?" Surely this isn't Aspergers/Autism?

But what about the silly rituals - The Simpsons, the trains, Star Wars.......

I'm so tired from thinking about it. Bourbon time.

Go with your gut. You know your child better then the "single serve" psychologists (a bit of a Fight Club reference there but you know what I mean). Being interested in people isn't an instant autism rule out. My daughter used to do a similar thing. Some kids on the spectrum learn everything there is about space, or dinosaurs etc. My DD's tick was collecting information about people - this is why she's a PPD-NOS rather than straight out aspergers. The thing is, she didn't actually CARE about the people themselves, she just wanted to know the details so she catalogue them. What's your name? What are you doing? - Basically, narrate your life... It used to drive me balmy! Her biggest problem ( and still is) is a lack of discrimination. She will go up to ANYONE. Engage with ANYONE. Wants to talk to ANYONE. Wants to show affection to ANYONE - including wanting to give the repair man she's only met five minutes ago a kiss and cuddle goodbye - scary. Understanding social boundaries is also about being discriminatory. The thing I've personally found through speaking with other parents and personal experience is that a lot of autistic kids need a lot of help understanding the idea of "degree". To them it's either all or nothing, black or white, full or empty. It's all about RULES. If this is wrong then the complete opposite must be right...

Is he discriminating between who he approaches and who he doesn't? Is the interest he shows in the people themselves or is he following a script? Does he actually want to get to know them, is he looking for a connection? Or is this a new tick where he's just collecting information? This is the fundamental question.

[Lulu]

*Lulu grabs the flagon, sinks the lot and passes around the Bourbon.

Further points -

*we raced through the dx to beat the clock for funding. Dx psych wasn't entirely happy with concrete aspy dx and did mention PDD-NOS and shades of other bits but god love her pushed it through for the $$$ and therefore extra help with intervention.

*ODD was something I did research, in fact before Aspergers. ADHD didn't even want to consider because of the constant mentions of medication. He really does ping off the walls though.

*He has not rated very high on the sensory tests either. After all that crap with the other stupid OT, a proper Autism-y OT has come to this conclusion. It's still there though.

I don't think he is ticking things off (totally get what you mean RE), he seems to really be looking for connections lately. There is to AND fro. When on form he is charming. He engages people right back - when he approched the snake people, apparently he did it with such a smile they all grabbed him and gave him head noogies and he laughed his butt off.

Jury isn't out either way but the ODD has always been at the back of my mind.

[deletedit]

Had another minor argument today ... this is about a thermometer that remembers minimum and maximum temperatures. To clear the memory, you press reset. Pressing min (or max) twice returns you to the ordinary temperature.

"Can I press the min button?"
"Er, yes ..."
"It says zero!"
"That was last night's minimum. Press the reset button so we can find out tonight's"
"I pressed min again! See, it says six again!"
"That's just the current temperature, press reset"
"I already pressed min!"
"Can you press the reset button then?"
"But I already pressed min!!!!"

Ugh. I just took it off her and did it for her and showed her that now the min, max and normal temperatures were all 'six'.

[Lulu]

good o - then next time she wants to press stuff, ask her which button does what...

Maz, I don't mind the labels as long as we have access to help and early intervention.

The best thing about it all is the fact I have got this funding. Without it I would not have been able to access the people that are helping me. Oh yes, I know my son better than anyone and we share a certain brainspace - but these people know about brain function and neuroplasticity in ways that I don't. These are the people that have a passion for the inner workings of the mind and have studied it for years, done stats, research and observations on many more children than just mine.

[mrsmac]

I have had the BEST day!! I went to an inservice course run by Sue Larkey on Autism/ASD and sensory issues and it was inspiring and helpful and fantastic. She is an amazing speaker and I came home wanting to be her!! She started out as a teacher who had an autistic boy in her class and no extra help or training and has gone on from there to be an expert in ASD especially teaching.
Some of the great quotes I got from today were:

To know someone with autism is not to know autism. Everyone is different even those with ASD
Choose your battles
Without a label you will be mislabelled like badly behaved/rude/undisciplined .

I have written a couple of pages of notes and I have some handouts too. She has written a number of books which I am hoping the school will buy.
Anyway enough of my new girl crush LOL

[Lulu]

I'm SO JEALOUS!!!!!

Isn't it amazing to hear someone so passionate - and what a fascinating subject.

I'm really annoyed I never became a teacher, because I'd love to be able to support kids in the school system...bit too late now dammit!

[mrsmac]

There were parents and teachers aides at this course too. It never too late Lu!!

[christy]

Hey guys!!! Sorry I've been outta the loop, I've had heaps going on here at home, not all to do with Matilda though, more to do with family overseas.

I love those quotes Christine and the "Choose Battles" thing has been a motto in our house for the past 4 years, glad to hear its a good one

I'm so exhausted all the time right now. I wish I had the energy to contribute more, but I will get back to myself sooner or later.

[super_lost_mumma_of_one]

hi everyone..

I hope you all don't mind me joining in on this thread.

I have a 2 year old little man who has recently been diagnosed with Autism..
To what extent we are currently unaware... our next paed app is 10/12

Hope to get to know you all well and learn lots of coping and dealing techniques

xoxo

[maz]

welcome aboard the rollercoaster super mumma (im breaking down your name cause its just to darn long )
my 2YO has just been diagnosed with aspies and my 8YO has autism. Both are driving me completely BARNY tonight.
the 8YO due to 2 girls at school teasing him and the 2YO cause he is sick and has a temp.

Im thinking of becoming an attraction at the zoo....cause the sounds coming out of my mouth atm are just to animal like...blllahhhhhhhhh

[super_lost_mumma_of_one]

Thank god that the forums is back!!!!!

I thought I was losing it when I couldn't get into here - I actually thought it was just my laptop being a brat.


Hope you are all well and that your lil ones are behaving as well as they can

The new latest thing here is the highest pitch squeal/scream all day!

I have an earache and a major headache today

Tomorrow is our first appointment with OT (we saw one 12 months ago for his hypotonia - low muscle tone) this one evidently is a paed one which is great!
She said after our joint OT/Speechy/Physio app last fortnight that she feels he definately has some sort of sensory deficiency..

Time will tell

*here's a strong glass of whatever alcohol you need to get you thru til bedtime***

xoxo

Vicki

[Inertia]

Hi ladies! Rather than remake the whole thread I had before I figured I can just jump on in here until we have a dx.

I think I am really having one of those breakdown moments though. Every tiny cute thing that bunny does, I am questioning it! We used to giggle that she was a complete fashionista. She only likes pink and white clothes, and whenever we go shopping, she adds another fuzzy soft faux fur piece of clothing to her wardrobe. Now I am wondering if it is a sensory thing. Its only soft subtle pinks - nothing bright and gaudy. And the fuzzy clothes are all so soft, but she loves them to pieces. For the record, she picks her own clothes. We hold it up and she either pushes it away or grabs it and puts it on her lap.

We went to the shopping centre in Lismore today, stopped for lunch, and she is sat in the food court with her hands over her ears. She is only a 5th percentile baby, so very small, and she is making milestones fine and does the cutest things. I feel like such a cow questioning all her actions now. =( Thinking its just the paranoia setting in.

Princess seems to be doing better. I had to speak to the DoE about Chilly the other day because the enrolment process was dragging on into the ridiculous (6 weeks!!!) and I needed someone to light a fire under their backsides. While we were on the phone we spoke at lengths about princess as well and the lady said while it is not ideal, we can use the botched IQ test to get immediate assistance pending her dx. She implied the mild intellectual disability result from the test can get us a bucket load of help and will be updated to ASD (if she is ASD) when the full raft of testing is finished.

So ladies... should I do it? Should I use this test that I know is a complete joke? I am concerned because I don't want to risk labeling princess as intellectually disabled if she isn't, iykwim... The idea of getting her immediate help is so appealing though. Ugh! Why do I always get stuck with the crappy decisions???

[Lulu]

Bunny is little and doesn't like loud noise. End of story. She sounds exactly like my Betty Boo (fashionista plus!) who did the same thing at the same age. Maybe you could say she is ahead in the fashion-awareness milestone .
Actually I'm not little and have trouble with the noise and lighting at big shopping centres.


Whats the deal with Chillys enrolment???

Errmmm, just quietly...the lady is right. Princess will get lots more help if she is considered intellectually impaired and I learnt today that once you have the funding you have it for 5 years (although it may vary from state to state) - ALTHOUGH you might want to double check because language has to be affected now, when before an ASD dx got you funding straight away. I suppose this chick would probably know for sure though - it sounds like she does the funding applications yeah?

[Inertia]

Yeah see. I tell ya, the paranoia is getting to me. One more school appointment and I think I am going to pack my uterus in a box and return it as faulty! *sigh* I hate this questioning everything. Hopefully it will calm down soon.

Chilly has been waiting to get a start date for school. Love the DoE, the school counselor called today and gave us one. Apparently they were changing counselors and didnt want to brief the old one on him and then only to change it a couple of weeks later. Guess I can understand that, but we were starting to get paranoid that we were going to get in some serious doodoo for him not being in school. Looks like he missed out on SPED placement though which is disappointing. He is on partial attendance in mainstream starting next tuesday.

The lady I spoke to at the DoE was the regional 'manager' itms. She gave me some numbers for organisations that can come out and do assessments on the level of assistance Princess will need, told me to give a copy of the results to the school (apparently the other school didnt!!! UGH) and they can move her into the first open SPED spot. She also mentioned they would be able to get an aide out to her asap pending the opening so I am guessing so! Well I will dig it out of the boxes tonight and get it to the school in the morning.

She has been referred for speech therapy in the past so would that help? We never made it to the top of the list before we moved out of the area (and we are talking over 12 months!!!) so I am not so sure.

[Lulu]

YES! Speech therapy will help.

Are you aware your local school has an ironclad obligation to take Chilly? Right NOW? It's not your fault and you won't get into trouble but THEY certainly will. I'm a bit behind in any issues behind that though, I only remember reading something about poo bum bullies?

[Inertia]

Yeah, he got into a fight with a couple of the little turds at school. They started it but because he won, he got into more trouble. *headdesk*

But, on the flip side, I would rather be having trouble getting him into school than having him battered. Blah.