Aspergers/Autism/Sensory Integration Chatter #3

:hugs: all around. Things are full on here as well. DH hurt his back on Sat, a "deranged" disc, where its not totally slipped out but his vertebrae in his lower spine has twisted and is pushing on a nerve. He was on his back for the weekend, and well its Tuesday night and he's still lying on the floor. Its been hard work. I'm tired and Matilda is struggling with having so much going on here. I couldn't work last night as I couldn't leave the girls with DH.

I'm so over everyone's demands atm... I have to help DH go to the toilet, get dressed and have a shower, get up and down... then M starts screaming because I haven't rushed up to get her some water, JJ is just copying everyone elses behaviour. DH keeps apologising (like he can help it! he did it hanging out the washing :rolleyes:). I need a holiday.... and July won't come soon enough!!!

Hello everyone,

:hug: Christy

Hope you remember me - I used to be Rayla.

Just thought I'd do a quick update on Layla's autism. She started at special school just over 2 years ago, and with a lot of hard work and an absolutely fantastic teacher is now in a learning support unit within a mainstream school. Before she left the special needs school last year, she was given the student of the year award. We're so proud of her. Most autistic behaviours have gone, but she still has speech problems.

I hope M is doing okay. Would love to hear about how things are with you.

xo

Ok. He's autistic. Higher on the scale than I would have thought before his recent behaviours.

Chewing on this. Hmmmm. Faaaaaaaaaaaaaaaaaaark. I knew it.

Oh Lu :comfort:

hannanat!!! You are back! of course I remember you. WOW She has had such amazing progress! That is fantastic! Of course you are proud of her.

Hi Ladies,
Oh Lu, and to do all this alone. Hugs babes.
We watched a movie called "Adam" on the weekend. It was about a young man with Asperger's and his journey through a small period within his life. His father had passed away and he was left all alone. He befriends a new neighbour (a female), and she guides him through some tough times during that period. It was funny and sad. It was funny as to some of the things he would say, yet sad, knowing that many of our kids (and mine) will have to go through some degreeness of what he did.
It gave me an insight, as to what my boy might be like as an adult.
Highly recommended movie, just to give us an insight into the future.

Oh Christy...**hugs**

Hey Lu,

Tried to PM you the day before yesterday but it wouldn't send cos you've reached your quota or something.

Love
Nat

Im a spaz. Cleaning it out now xxxxoxoxo

Just coming in to have a HUGE whine about the fact its WAAAYYYY easier to get support for spectrum kids if they are in a government school. Mitch isn't so apparently its TOO FRICKEN BAD FOR HIM.

*snarl

Hugs Lu!

:hug: Lu I hear ya. We chose to not worry about an aide or anythign because it wasn't necessary at that time. I suppose with M if she needs more assistence in time, we will have to reevaluate. They have altered somethings for her, but I guess our school is so small , its not as noticable?

I would have thought private schools would be better able to get extra help and would have more money ? That's terrible he'll get nothing- mind you we are having so much trouble getting teachers aides at the moment and trained ones are like gold dust.

I would have thought so too, but it isn't the case unfortunately. I'm taking D out of an independent school at the end of this year and into a public school, as they have a lot more support for kids like ours. Our school is so dumb, that they dont even have sports teams to play against other schools. Our school has a FT psychologist, yet has done nothing for kids like D. I really don't know what she does with her time!

I got the Out of Sync Child book yesterday from the local bookshop, it was on sale too. D knew that it was a book about him as he read parts of it whilst we were in the car. I told him that it was about him, and that i wanted to learn more so i could help him be the best he can be. He was okay with that.

As i read the first few pages, i was almost in tears and blaming myself as to how i could not see it all these years. Also, D had several sessions of OT last year and the paed OT specialist, didn't tell me anything about SPD or pick up anything really out of the blue. She just said that he had a delay with his fine and gross motor skills and thats about it.

I'll be going back once i get all the testing done.

:

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I would have thought private schools would be better able to get extra help and would have more money ? That's terrible he'll get nothing- mind you we are having so much trouble getting teachers aides at the moment and trained ones are like gold dust.

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Yep, that's a big misunderstanding. It's a tiny independent school run by the parents. There is only 65 students and yes I do pay higher fees - but lots of that goes on care of the animals etc (and frankly that's how I'd like to see the money spent) and maintenance etc. I dunno how those huge big hoity toity places with indoor pools manage to get so much govt support. It makes me SICK.
DS keeps running off and his behaviour has escalated so much that it's not fair on the other students or the teachers. The teachers like him and can see how beautiful he is, they were telling me of lovely things he has done.....but at the end of the day you never know when he is going to go off and they are spending so much time looking for him and pulling him out of trees :rolleyes:

He just can't cope with too many people in the room. One on one he is amazing, but they just can't do that and even if they could get an aide it won't be till next year and something has to give before then.
They have found another school that only has 5 students in each class and is specifically for the kids that aren't coping with school. Plenty of sensory kids etc, and it has an amazing track record. One year at this place then they go back to their own schools with a whole set of new tools :dance:
They also do lots of family support and I really need that. I said a month ago that if I could give him a full year of intense help he would be ok - at least I got something right. I just didn't know this was available.

So it's good in the end, I've been crying all day yesterday worrying about my boy. If anyone knows of any financial assistance that available (other than carers payment etc) can you let me know. I won't be able to go back to work properly for a long time, it's already killing me financially.

Turk - see if you can get a copy of All Cats Have Aspergers - you will giggle your butt off.

:hug: oh Lu.... I have tears in my eyes and stomach in my mouth.... I can't imagine how hard this is for you! How hard to hear that he isn't fitting in to the best place possible for him! BUT I LOVE the teachers attitudes, that they love him and want him back, what an awesome place.

See, we would be in a similar position if M reacted the same way at her school, they just don't have the ability to have one on one time with these kids all day. They are nuturing and more involved, but they just don't have the capacity that larger schools have. I'm so glad there's somewhere he can get some intense help NOW.

My BIL used to have teachers pass him around all day in Primary School. My friends mum was one of the teachers there & he used to get passed around because the teachers would bring him into the next class and say "I've had enough, I can't do this". My MIL has no idea that this happened to him in primary school. My friends mum used to take him all the time with her, she thought he was a lovely kid with heaps of energy and enthusiasm for what he liked, but he was misunderstood" Unfortunately, she wasn't there his entire education.... but she remembers him well. My BIL has asperger's and only got diagnosed this last year, he went through most of his life thinking that he was "evil" or "bad" because that was what adults tended to label him as.

Thank goodness mindsets are changing and people are becoming educated.... for our kids sakes.... they won't be thought of as "evil" or "bad" just because they struggle with different things than "normal" kids do.

Lu, the mum in my class gets funding for her DS with aspergers from DADEC (I think its changed names again this week but its dept for disability and aging) she also gets FACSIA (can't remember what that stands for!!) She seems to be right on top of all funding available so I will ask her for advice for you if you like. She has been awesome with advice about Riley.

Riley is going to see a new OT who is heaps cheaper (I know it shouldnt be about money but sadly it is) and she is going to chat to speechie he saw a year ago, his previous OT who was great but as I said exxy and only did 1 hr sessions and was a 30 minute drive away, and also send a questionaire to his FDC lady. She will then see him and decide if he needs a referral to see a behavioural psyc. who is fab at diagnosing spectrum disorders. I finally feel like all the things are lining up and I may find out finally whats going on with him. I am pretty sure he has some kind of language disorder but the speechie didn't even test for that, she just kept saying how hard he was to work with- um der he wasn't yet 3 and he obviously had issues or he wouldn't have been there!!! Needless to say I didn't last longer than 3 sessions with her.

thanks for that mrsmac! I think DADEC is a NSW thing....will try to chase it further though.

xxoxoxo

Sp how has everyone's week been??? Mines been up and down. I've been sick still with this stupid head cold that won't go away, then it travelled to my chest and I've got an infection now :rolleyes: I had to take today off work in order to rest... and I slept 4 hours.

M's been.... well up & down. Some days she's unbelievable, but then days like today, she's trying so hard and yet can't control herself... but you can see her trying. Its hard for everyone I suppose.

Hugs Christy, hope you get better soon. We have to catch up Riley still asks about you and Erin loves M!

The EI teacher from school has been observing R when they are playing with the pre school kids ( he is at preschool and the EI unit usually goes and plays with them in the yard) She thinks he may have verbal dyspraxia so we will investigate that.

My ASD boy at school used to go to Lifetstart and his mum said that they had a meeting last night about school integration and that both she and the lady in charge of the program gave me a great rap for being kind, caring and making T's transition to school so easy. I got all teary, its nice to be appreciated and I feel so happy that his experience with maninstream schooling is so positive. (sorry to blow my own trumpet but I felt so proud)

We're ok here. I spose :rolleyes:

I have to move this weekend, it's been a really sad time for us. Even though I want to kill Nikki most of the time for his lack of patience with DS, and even though we argue all the time...it's going to be the last time we will be together in our fractured little way :(
Nik won't be able to mosey on in and hang out with us anymore, he just won't be able to see the kids so much - or drive me crazy...

I checked out the potential new school today. I really like it. 6 little boys speaking beautifully to the visitor (me!), in a quiet classroom with a teacher that clearly loves them but won't take an ounce of crap from any of them. If it sounds scary think again - firm, clear boundaries and rules are what keeps my boy feeling secure. I hope he can get in soon.

You rock mrsmac, it makes all the difference in the world to know a teacher 'gets' what level your child is on. I have often driven away from school in tears of gratitude from DS's carers xoxoxoxo

oh and I've started to blog our travels in autism land - http://luluandthecyclone.blogspot.com/

Lu as you know I love your blog. Its fantastic! I needed my debrief thread I put on here... it helped me so much in debriefing and seeing how much I actually knew about M. YKWIM?

mrsmac, I don't doubt that you are an amazing teacher. You actually CARE about the kids which is a wonderful thing!

Thankyou ladies I am blushing. I do love my class very much so its nice sometimes to have that recognised.

Lulu- I spoke to T's mum re funding, she said get in touch with ASPECT and they should be able to point you in the right direction. Is the new school public or private? Will thye help you get funding for classroom support? I get 3 1/2 hrs a week for T in class so you should get similar for Cyclone I would imagine.

There you go - rockin all over the world again Mrsmac...Thank you so much.

The new school is independent too, but caters for the aspys so no classroom help will be needed. Sadly and FRUSTRATINGLY the thousands of funding we are eligible for isn't able to be used for school fees. Frackin.

yeah, Christy - I think it's really going to help xoxoxo

That is sooo stupid Lu! Can you get reduced fees for buying resources for the classroom with the funding?? I know that T's mum has offered to buy my classroom stuff I need for him out of her funding.

I hope you dont mind me popping in but I have a few questions to ask if thats ok. Google is driving me batty so I figured I would get more practical help from you all.

First question is: can anyone direct me to a website or something that has symptoms lists for disorders, primarily aimed at young kids ie toddler? Alot of the ones Im finding are aimed at primary school age children.

Also, just curious if you can remember anything your child did that made alarm bells ring even if others were telling you everything was fine?

Thanks.

Quick temper, rigid must be the boss of everything, meltdown tantrums long after he should have grown out of them, easily overwhelmed, constant talking about the saaaaaaaame one subject. Now he has started school he has started hitting out at others when before he just reserved it for his poor little sister.
Always needs to be supervised - becuase something always goes wrong and it drives him mental to the point of screaming the house down.

Welcome to the 3 ring circus.

:ROFL: lu ahhh yes..3 ring circus

Mario loved everything that spun...he would put car;s on their backs or their sides just to watch the wheels turn as he pushed them. Flapping of hands...tippy toe walking. Hated strangers coming to the house..would go off his nut, head butt the table or wall until he bleed, lash out at me or his brother. Hide under the table...only like certain foods (all white foods here :rolleyes:) didnt like smell, textures of some thines, wore only shorts and t-shirt for over 2 years. Needed routine.

I started a thread https://www.bellybelly.com.au/forums...fe-autism.html about our journey to start with. I hope that it helps in some way hon

:hug: I wanted to say more in your other thread but its something people tend to get peeved about if you mention the 'spectrum' word

Is obsessive behaviour involved as well? Because Ripley does all of those things and more. He has meltdowns over EVERYTHING. God forbid if his brothers touch something he even remotely thought about in the last 72hrs. He gets possessive and obsessive - currently he drags two McD's dragon toys EVERYWHERE. He absolutely cannot function without them, wont even go to bed unless they are there. He even took them to his swimming lesson and held them the whole time. If we cannot find them, or his blankie, or we even dare to suggest handing them over to us, screaming ensues so I am anal about keeping tabs on them so to avoid no sleep and mega tanties. He watches the same DVD over and over til he picks a new one then thats played over and over. He is physically rough, even in normal everyday things. I absolutely cannot take my eyes off him for a second, not even when he is asleep because he will definately do something bad or run away. A few mornings Ive found him out in the backyard at 6am! He is defiant to the point where its nearly comical - he just does not appear to care, or care to understand, why his behaviour is unacceptable, punishment is useless because he just goes right on with life and does the same thing again without any qualms about being in trouble and knowing full well Im going to crack it. He will stare at me and stare at me when I talk to him, like he is listening but doesnt understand a word Im saying, its like he goes blank. So frustrating. His development is normal I guess; but his verbal communication is iffy. I know he can talk, he knows he can talk but mostly all I get is a bunch of unintelligable mumbling with a word thrown it. He has so much energy its exhausting. He just goes and goes and goes and goes and goes; and the attention span is nearly non existant. He's suddenly gotten fussy with eating. He just cant sit still long enough to eat his meal; or he is picky about what it is. He wont touch anything cream based, wont eat meat, wont eat vegies, pasta is the only thing I can get into him without drama's.

Im at a loss as what to do with him. I know they go through terrible two's and this might be normal but I think his behaviour is insane. Im starting to wonder if there isnt something more to it. Ive always thought there was something up with him but been to afraid to investigate.

O yeah on the obsessions! We copped trains for years, then trucks - alllll the different kinds. Now we have moved onto Star Wars.

I just got this info today -

What is Asperger Syndrome?

A developmental disorder which falls within the Autism Spectrum. Main features of this disorder become obvious during early childhood and remain constant throughout life, although common features and degree of actual impairment can vary. Rarely recognised before the age of 3. More common in boys.
Core features are lack of social skills, limited ability to have a 2 way conversation and an intense interest in a particular subject. Most of these children attend normal primary schools.

COMMUNICATION

Although these children are often highly articulate, content of speech may be abnormal, tending to be pedantic and often centering on 1 or 2 favourite topics. Sometimes a word or phrase is repeated over and over. Usually there is a comprehension deficit despite apparent superior verbal skills. Non verbal communication, both expressive and receptive is often impaired.

SOCIAL INTERACTION

There tends to be impairment in a 2 way social interaction due to an inability to understand the rules governing social behaviour. A lack of empathy with other and little to no eye contact may be evident. Can appear to be stuck on the egocentric stage of social and emotional development. They tend to perceive the world exclusively from their own point of view. Although interested in social relationships often social contact is made inappropriately.

SOCIAL BEHAVIOUR

Is often naive and peculiar. Can tend to be intensely attached to particular possessions often engaging in repetitive activities. Resistant to change, coping best when life is predictable. They prefer structure and may concentrate exclusively on matter in which they are interested. Are often known as loners who never quite fit in because of eccentric behaviour, peculiar ways of speaking and a lack of social skills.

COMMON FEATURES

Excellent rote memory, absorbs facts easily. General performs well with maths science and reading. May be anxious and unable to cope with criticism or imperfection. Often the victims of teasing and bullying leading to withdrawal into isolated activities. Can appear to be clumsy and have an unusual gait or stance. Often seen as odd or eccentric. Language appears good but may have limited content and poor social understandinjg. Self interested and lacks empathy.

Freya I too have a debrief journey thread "Meeting Matilda... Meeting Autism". I think you may find somethings insteresting when you read our journeys. A lot of what he does sounds very familiar. :hug:

Maz- I hear you on the white foods!!! The only vegetable Riley will eat is mashed potato or hot chips! If I try and mash any other veg with the potato he takes one look at it and freaks.

we had a great tea tonight...sheppards pie and what does mario have...noodles and scrambled eggs :rolleyes: I always have to cook 2 meals..one for us all and then one for him

you can usually mash cauliflower in there under the radar.

Will try that Lu! I wonder if I could convince Maccas to put vegies in their nuggets? He insists on nuggets "from Jecca's work not your house mum".

:wall: food.... its the bain of my existence!!! I do keep 1/4 cup pureed cauliflower in the freezer to add into mashed potato and scrambled eggs.... it even can go into eggs and used in the batter for french toast.... I put it in "white soup" that Matilda LOVES!

I make a bacon, potato and leek soup... and then hide 1/4 cauliflower in it! Because its all pureed in the end & tastes of bacon and is white! Whammo! I also hide sweet potato puree in most things.... bolognaise, pizza sauce.... etc etc. I hide sweet potato in my baking as well... choc chip biscuits, chocolate cake.... even cinnamon scrolls... Apple puree works as well.

my boy is on the white diet too. He won't touch anything with greens in it unless it is from macca's or some other takeaway place.
The stuff he eats is limited to chicken, chicken and more chicken. Serve chicken in anyway shape or form and he'll eat it.
The movie "Adam" about the Aspy man was fascinating as Adam ate the same food day in and out.

They had macca's for tea last night, at about 4.30pm and by 7pm he was starving. He is always hungry. I said to DH that he doesn't know the feeling of feeling full ITMS and that is another aspy trait. He is so big. I feel sorry for him. He just wants to eat. He camps out in the pantry. I've tried dieticians but he refuses to go. He has meltdowns and tantrums and cries.

Why can't they be "normal"?

I dont have to hide cauliflower thankfully...he'll eat a plate full of htat and brocolli. He wont eat anything..and i mean ANYTHING that was a fluid base or consistancy. NO bolognaise sause, no sauce full stop, no soup, no pasta with white sauce nothing BUT he will eat chocolate yogo's or milo's :rolleyes:. everything has to be steamed or boiled, drained and boring! He likes cheese but only in slice form, not grated or in the cheese sticks for school. He loves it when I steam fish..one of his fav things..and I know when things are going pear shaped...he ask's for milk..which he did last night :(.

:dance: oh and last week he asked for orange juice and skulled a glass :o

Crazy... they are all so funny and different and quirky. Ms M is very particular but sometimes surprises me. I made a fritatta tonight with potato and bacon and hid 1/2 cup pureed cauliflower in it, I served it with warm tortillas and she made and ate two "egg" burritos.... I was in shock, but then little Miss J refused to eat :wall: stupid food....

My Alex asks for noodles every night. I put sausages in them for a while and now can put cut up chops or chicken in there. Every meat is called chicken though, except for strasbourg from the deli, that's square ham.

There was talk back there about SPD and how a lot of ASD kids have sensory issues as well. Can it work the other way around, can you just have sensory issues without the ASD ? Are kids SPD 'on the spectrum' ? We first saw a paed OT when he was 2.5 and she said SPD and then the paed. said high functioning ASD when he was 3. I agree with the sensory issues, but sometimes wonder about the ASD - is it that or is it just Alex ? His sensory issues are mostly hearing, touch and food related. Loud or unexpected noises can send him hysterical, exp the ****atoos around here. He won't wear denim either, long sleeves and legs in summer, BIG issues with socks and haircuts, blanket and doona all year round (loves the weight) and very rigid with food. I cried last year when he ate watermelon for the first time even though he looked like he was eating razor blades. And the proprioceptive issues - he's very sensory seeking - bumping, wrapping, falling over etc.

We saw a psychologist last week for testing prior to school next year. In the IQ test he was in the average range for the visual section and below average in the verbal section - not surprised at either of those. She has to send out the Vineland assessment and we go back for the CARS one at the end of the month.

Al's first obsession was Thomas the Tank - he never left the house without a book or a toy, watched videos over and over, lined them up in his order, used to list over and over the names of trains, very rigid in his play. He liked Bob the Builder in a more 'normal' way and now he's into Ben 10. He never used to like the scary Thomas' (ones with night scenes or the odd ghost) but he likes the action in Ben 10 - but I figure this time around it's because that's what he is seeking, the jumping and crashing and karate chopping walls and furniture. But this time I know and I can use it for good and not evil :-)

Question - is having a hoarse or deep voice a common thing among ASD kids? Alex has always been quite raspy and has veins on the side of his neck that stand out when he is talking a lot or is upset. A former speechie said something about nodules - has anyone any experience with this here ?

Hi Barb!

Matilda was first diagnosed with just SPD, not ASD as well. So I believe you can have SPD without being "on the spectrum".

Voice... Matilda doesn't have a scratchy voice at all.... its pretty normal.

Hi barb,

My D has a normal sounding voice for an 8yo boy.