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Thread: Aspergers/Autism/Sensory Integration Chatter #5

  1. #1

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    Default Aspergers/Autism/Sensory Integration Chatter #5

    following on from here http://www.bellybelly.com.au/forums/...6/index18.html


  2. #2

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    Hi guys, I did read the previous thread where the questions were.

    ~clover~ I have to say that DD has mostly made eye contact with family and children friends her whole life. New children and adults she will not make eye contact with, and sometimes even with extended family. She plays with other children, and seeks playing with others. Its hard isn't it? She's definately on the spectrum. She finds it hard to make friends and gets bullied quite easily.

    The journey with SPD and ASD can be quite long and scary, but I think if you continue to trust your instincts and find what works for your child than a diagnosis isn't always important. I had to have one, but that was for me and getting funding to do the things we were already doing.

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    Thanks Christy. There are just so many characteristics that are all different in different kids.
    I've been wondering myself, but didn't say anything to the gp except that I'm having alot of trouble with his behaviour. He asked a few questions & referred us to OT.
    Said it could be just something like ADHD, or he could be on the spectrum.

    The OT rang to make the appointment today & said that it looks like we'll require a team of people for DS, after checking that I'd followed through with his early intervention referral she gave me.

    The money after our EPC runs out is going to kill me, but I'm trying to get official diagnosis for that reason. That little bit c'link might give us will be a good start.

  4. #4

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    ~Clover~ my DS makes eye contact also... but not as much as other children. He is quite social, but often will prefer for others to seek him to play. Playing is often on his terms, and if it isn't, then he refuses to play. He certainly doesn't have any close friends that i know of. He will play with other kids, but doesn't really form ongoing friendships.
    TBH the thing i am most worried about for when he goes to school next year is the social aspect.

  5. #5

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    Well DS has one good friend. He & my girls are the only kids he plays with. If he doesn't have them around he won't leave my side, or my lap.

    If someone talks to him he'll look at them, or he might watch others, but he won't otherwise. Doing a shopping trip is too much. It seems more that he can't handle the stimulation of dealing with people, than anything. He screams, doesn't want to go into shops & nothing stops it til we get home... often he'll still go on for hours with the tiniest things setting off tantrum/meltdowns. Sometimes it can last days...

  6. #6

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    My DD1 used to freak out at shops more than anything else. She couldn't handle all the stimulation as far as smells/lights/noises. She still can't. Its so full on, she's 7 now and had over 2 years of OT and we STILL have to beware and careful when entering a shopping environment. Its more for her to due to the noise associated with so many people rather than the amount of people.

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    I think his problem is dealing with people. He doesn't like them talking to him. He's ok to go into bigger shopping centres (doesn't last long though), but a small office where someone might talk to him is what he doesn't like. The QBE office, Post Office & RTA... He knows people usually will talk to him in these smaller places. He stopped coming into our small supermarket here for a while. He would wait out the front for me (I'd only grab bread or something & still be able to see him!) Now he hides behind my legs.

    His one good friend he has is one we see most days when the girls are at school. We go visit them regularly, so he's been seeing him more than once a week since he was 8 months old.

    I have so many reasons I think he shows signs of autism, yet so many reasons he doesn't.

    He needs to control everything. If we come in the front door he might want to open & close it. If this doesn't happen he'll lose it. If I so much as touch the door he'll lose it.
    He's starting to use imaginitive play. I think. His car will say hello to mine. They will follow each other around & they will fight.. Then he'll go really quiet for a good hour or so while he lines his cars all up perfectly, facing the same way. Utes together, sedans together, etc. He only lines them up though (hotwheels) coz they are all about the same size. Bigger & smaller ones are too frusterating.

    I just don't know. I can't stop thinking about it. Can't wait til this appointment to have an idea of whats really going on.

  8. #8

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    Hi, just subbing to new thread. We finally got notification of our first paed appt. At the child developement and behavioral clinic. It's 26th august. So looking forward to getting the diagnosis process underway. She is on wait list to see OT as well.

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    Had DS's OT assessment on Monday. She said pretty early on that she doesn't see any ASD there.

    We haven't had the findings appointment yet & no report as yet, but when we talked at the end of the assessment we were discussing sensory avoiding & anxiety.

    So he's possibly a sensory avoider & its causing anxiety. Sometimes before we go anywhere because he knows whats coming, but mostly afterwards. It takes him days to come down off being over stimulated.

    I'm only learning these things about him now. The next day I ad to have the girls somewhere else for a day & pick them up later. Rather than drive the half hour home & back I thought we'd do some things. We had chips at a cafe, then dropped into 2 op shops. After that the 3 of us just sat on the riverbank. DS chose to sit in the shade, DD & I in the warm sun.

    He was ok when there. Climbed a little tree & spent most of the time there. But I've never realised this before. He started asking to go home. We stayed about an hour. Maybe a bit more. I've now realised it was simple things like the sunshine & cars/trucks on the highway that were too much for him. While it was nice for me, it probably wasn't so nice for him.

    Anyway, after 3 weeks of no real melt downs, they started again almost immediately. He was still coming down off Tuesday when he went to day care today. He did ok, but is still a bit out of sorts. Snapping very easily.

    So anyway, the OT doesn't have any answers for his attatchment issues, or his lining up of cars. Its an obsessive, all have to be perfect, move them & lose your life kind of lining up. He gets very wrapped up in it.

    The attatchment issues... Put it this way. After it being too cold for them to spend much time outside til recently, he didn't notice the outside fridge gone. It went 2 months ago. Yesterday he noticed. 'Where's the fridge mum?', 'but its sposed to be here'... He didn't like it. But didn't cry like he did about my car. Cried about that for 12 months after we sold it.




    So anyway, I talked to my gp today about taking it further anyway. He agreed. We'll get her report, then he'll give me the referral to the paed I want & maybe a child psycologist as well.

    Its such a relief when your doc is on your side

    (Sorry for the essay, bit of an over update )

  10. #10

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    9Oh Clover! Some answers are good huh? But it still sounds a bit "up in the air". Sounds like you're making great progress in understanding your son yourself which is awesome! It's funny how you don't notice the subtle little differences like shade vs sun and then when you do it's like a lightbulb goes on huh?

    My son had his developmental assessment for government preschool services on Wednesday. It went well. He failed with flying colours He's so sweet and smiley and makees eye contact but then ALL he said the whole time was the name of the In The Night Garden characters. Over and over again. They seem to think he's autistic too. Everyone says it, we're just still waiting for the official diagnosis before anyone will say it in so many words.

    So he qualifies for developmental preschool, which is 4 mornings a week starting in mid September. He'll be in a class with 12 children, teacher and two assistants. OT, PT and SLP will come in and out all the time too and he'll be taken aside for one-on-one OT and SLP sessions. I think it'll be really good for him- lots of repetition and opportunities to learn!

    We've also started private OT at one of the most highly recommended places in Seattle. It's based on the floortime model so I'm learning about how to do floortime. It seems good.

    Still going to speech, although I think since I wrote last we've added another speech therapist on another day so we go twice a week. They have very different styles so it's good actually because he gets different things out of both sessions.

    We're in the early days of trying to start the GAPS diet too. It's tough because he only eats 3 foods so doing a diet intervention isn't easy! We'll get there though. I'm determined! Anyone else read the Gut and Psychology Syndrome book? It's amazing- I'm sure it's going to change our lives!

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    I looked into the GAPS diet. I agree its a bit hard when your child only eats certain things, mine are shocking with their food. All 3 older ones! Though DD1 isn't too bad & is getting better.

    Yesterday I did the food shop, because I'm possibly putting the kids in the Steiner school in the next month or so, I cut out all processed foods. Including DD2's go to food, bikkie & cheese (le snack things).

    No white bread in sight. 2 loaves of wholegrain & one of wholemeal (DD2 will NOT do seedy bread), over load of fruit.

    Only thing I bought that wasn't perfect was pies & doughnuts. I'm worried DD2 will starve, but if she gets hungry enough she might try new things

    There are still a few things on the GAPS list I bought (OMG, I didn't buy apple juice! Thats the only thing the kids are allowed besides water!! One a day, they're going to DIE! ), I really just want to cut out processed foods & additives. I know DD2 is sensitive.


    It was PDD-NOS our GP suggested yesterday. I completely forgot.

    DS started avoidance behaviour a while ago, but I didn't really notice. Telling me the music was too loud in the car, turning all the lights off in the house. He's never eaten mashed potato. There aren't any other mushy foods we really have, so not 100% sure about that one. I've noticed he doesn't mind spicey & tangy foods. Last night we had a kiwi fruit that was just on the verge of being not ripe yet & he loved it.

    Its only been since DD2's seeking was picked up & I started reading about all that stuff, that I started seeing these behaviours in him. I'd never heard of any of this stuff before.

  12. #12

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    It's been quiet in here! How is everyone going?

    Just a quick update. We had our first visit with the paediatric registrar at the Child Development & Behavioural Clinic last week. The paed said that if DD is on the spectrum, it is mild but he does agree that with her "escentricities" (the paeds words) he does agree that it's worthwhile having DD assessed. So she is on the wait list to have the ADOS assessment and they tell me it'll be in about 3 months time. He also picked up that DD is flat footed and has low muscle tone (explains her clumsiness) and also that she needs to see an OT to help with her fine motor skills. Also, because DD snores quite often and has naturally very large tonsils we need to see an ENT. He believes that if she's having sleeping issues than that would not be helping with her behaviour either.

    So, now we wait to see the OT and to have the ADOS assessment. And her ENT appointment is booked for November.

    Has any one else here had their child do the ADOS method of assessment?

  13. #13

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    Hi everyone. What's the GAPS diet and how is it supposed to help? Is it related to the leaky gut theory?

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    I'm not sure about the GAPS diet.... sorry!

    Matilda did the ADOS assessment with a child psychologist, and then the paed did another assessment (can't remember which). She got in the medium range for ASD through the ADOS. However, she was considered high functioning on the other one .

  15. #15

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    GAPS is gut and psychology syndrome. Yes, it's about leaky gut. It's a protocol to heal the gut (basically, simple healthy food). Theidea is that once the gut is healed it will stop absorbing undigested food which act as toxins in the body, it will be able to properly absorb nutrients so the body and brain can function properly and it will be able to remove toxins such as heavy metals from the body, the way a healthy gut does. The book is excellent and I highly recommend reading it.

  16. #16

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    Just a pop in, busy busy busy these days.

    I was fortunate enough to attend a seminar presented by the legendary Tony Attwood today. I came away from it feeling renewed and a whole lot more knowledgable (and loaded down with books and sensory toys lol) Ripley has been slowly sliding down a slippery slope lately; its getting to a point where people who've known us for a long time are finally seeing the 'real' him. Last week at the park he spent the whole 3hrs wandering around roaring at people (he was being a dragon) but he ended up frightening a few of the other kids (random people) and a few parents shoo'ed their kids away from him, near broke my heart He's progressed to threatening to kill me when he has a meltdown and yesterday he spent 20min's scratching my face and arms, punching me and screaming when I took Ds1 to karate. Poor instructor didnt know what to do. I didnt know what to do except sit on him until he calmed down; Im not used to dealing with this behaviour in public.

    I hope everyone else is travelling as well as you can when you live our lives

  17. #17

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    Hi ladies,

    Popping in here hoping to get some answers to my questions. My DS is 17.5 months old and I have been worried about his 'certain' behaviours for a while now. Mainly it's his arm flapping and his leg kicking (he does it a lot while in his high chair, his car seat and in his stoller). Automatically I'm thinking autism, but he does not seem to fit the profile exactly (well from what I read on the net). I realise the spectrum is very wide. I have so far taken him to his pediatrician and he seems to think his arm flapping and his kicking is his way of expressing his excitement/frastration/boredom and he will grow out of it when he starts walking. I have his 18 month MCHN app. in 4 weeks so I will be seeking her opinion on this and also asking if he can get assessed for early intervention. His vocab consist of mum, dada, yum, and other noises which are not words (well to me anyway).

    I was just wondering, with those of you with children with ASD and autism (is there more???) at what age in your kids did you start noticing certain behaviours that worried you?

    Basically DS has:

    has been late with all his milestones so far
    his fine motor skills are OK but not fantastic
    good eye contact and responds to his name but not all the time
    does not finger point
    does not stack anything but demolishes the blocks when I stack them
    when I give him this 'fit the shapes' thing he only plays with the pieces and them throws them away
    he does not seem 'far away' although sometimes it looks like he is seeing through me
    loud noises and lights do not seem to affect him
    he doesn't appear to pay any attention to the lady at gymbaroo when she is calling out his name to show him something
    doesn't seem to chuck a tanty unless he is super tired and I don't give him what he wants
    he has been good with night sleeping but not so much day sleeping (that has improved now that he is more active though)

    Is he too young to pick up on other things like his interaction with other kids?

    Can't think of any more now but that will do for now.

    TIA

  18. #18

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    DS had his first early intervention appointment. OT is driving me nuts! Haven't heard anything back from his assessment yet. The report should've been done by now. I want to get my referral for the paed. Going on the waiting list for the public OT soon.
    We haven't even started DD2's therapy she was sposed to have. It was back in May she decided that was needed... weekly OT. Not one session yet.

    DD2 has her official ADHD diagnosis. Meds are being pushed... I'm not going there yet, but I might accept the script to save arguments. Dunno... wish we'd known about early intervention when she was younger. Her behaviour is really difficult at the moment. Wingy, whiney, one extreme to the next. Over happy & over upset. Impossible

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