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thread: Aspergers/Autism/Sensory Integration Chatter #3

  1. #163
    Registered User

    Apr 2010
    1,118

    Another odd difference between the two kids that may or may not mean anything - DD#2 is really good at singing along to songs. She knows heaps of songs off playschool, sesame street, wiggles, advertising jingles etc and will sing along to anything on the radio after the first verse. She keeps in time and tune quite well.

    DD#1 had a brief tuneless dalliance with twinkle twinkle little star when she was 3 but otherwise has always just made up monotonic wails rather than singing existing songs. Sometimes she hums discordantly to the tune of TV shows.

    But I guess I could put this down to a total lack of musical aptitude rather than anything more ... despite this being her 3rd year of piano lessons ...

  2. #164
    Lucy in the sky with diamonds.

    Jan 2005
    Funky Town, Vic
    7,070

    Hey Elf - one thing I have learned is never to compare children. Second thing - never compare Aspies! They are all so different, but the way they play or do things can have alot of similarities.
    DS is pretty attracted to all things warlike, weapons, guns etc *(despite my hatred of same). He often issues HORRIBLE threats to me and I must confess my relief when Christy visited here one day and Matilda said almost exactly the same horrible thing to her (sorry!, *snicker) - why the violence lol?

    DS never really got into television until he was older. He really likes music but likes it more if he knows the words - then he is unstoppable. I also can't vacuum when he is home - but he has the loudest voice and makes more noise than any child I know...

    Good to see you again murraysmum - hope you get some respite soon xoxoxo

  3. #165
    Registered User

    Oct 2006
    Sydney NSW
    4,837

    Has anyone noticed how well the siblings of these kids deal with it ?
    In the holidays I watched Jovie (Christy's DD) calm Riley out of a meltdown!!! She is so calm at dealing with things and so good that she talked him down (I am in awe of that child!!) I also notice that Erin my DD is fantastic with the super kid in my class because she has learn to cope with R.

  4. #166
    Registered User

    Oct 2003
    Forestville NSW
    8,944

    Awwww mrsmac, thanks! She is very good with super kids. She tends to just get them as well, probably like Erin, but JJ has known no difference. Thats always been her life.

    RumpledElf, my two DD's are completely different, but M (who is autistic) can hold a very good beat and sing in tune. Both DH & I are musos so maybe she's got some of that in her as well. Some autistics can't talk, but can play music... DD2 loves music, but can't sing in tune at all.

  5. #167
    Registered User

    Apr 2010
    1,118

    I have trouble *not* comparing mine as they are so different it is actually hard to find anything they do that is in common! I swear they both grew up in totally different households with different parents. Partly true given that I moved in with my partner when DD#1 was 4, but still ...

    DD#2 is great. She organises DD#1, who has this thing for never doing things twice the same way or putting things in the same place or following the same steps to do something and thus is perpetually disorganised and losing things. The rest of us in this house have habits and routines and only lose things when we put them somewhere different.

    We had a suspision about DD#1 confirmed last night. She likes food based purely on texture not taste - we had some very spicy sausages for dinner last night from Coles, where we usually don't shop so we'd never had them before. She went on and on about how soft and juicy they were, when we were bracing for her to complain about the pepper. She complains no end about some sausages we get locally that taste very similar (a bit less peppery though lol) but are very firm. She claimed she couldn't taste any pepper at all in them, despite it being by far the strongest flavour in the sausages. She'd fail the masterchef tasting challenges - she can't tell beef/pork/chicken/lamb apart with the exception of roast chicken or chicken pieces that are clearly chicken-shaped. She seems to use complaints about the taste of something if she hates a food for no particular reason (ie, hates the texture) but will happily eat the same combination of ingredients if it is cooked in a different way to give it a different texture. Drives us bonkers so we basically ignore her opinion about dinner since it is so hard to predict what she hates and what she doesn't hate when our brains are wired to think in flavours not textures.

  6. #168
    Lucy in the sky with diamonds.

    Jan 2005
    Funky Town, Vic
    7,070

    I'm the same on textures too, so I get DS in this regard - poor kid!

    mrsmac - DD spends most of her time stirring DS into a meltdown....

  7. #169
    Registered User

    Apr 2010
    1,118

    We tend to make really nice tasting food in this house so it is horrible when 3 (or more when we have guests) people are sitting there waxing lyrical about how delicious the food is and the 4th is there whinging and complaining about how disgusting it is

    It often escalates into an argument or more, like the time she hit me a few weeks ago. That was over bread.

    We really do need help with conflict resolution in this house. It is argument free bliss when DD#1 is away. Even DD#2 is starting to argue with DD#1 because she is so illogical. Arguing over simple things too, like we buy chocolate or something nice, give DD#2 some for her and some to give to DD#1 and DD#1 refuses it, which gets DD#2 very upset as she doesn't understand. DD#1 started arguing with me yesterday because I said I didn't know what we were having for dinner and she immediately started interrogating me as to what we were having and point blank refused to accept 'I don't know, we haven't gone shopping yet, stop it' MULTIPLE times (voice getting more raised and annoyed each time) as an answer. Thankfully that one got cut short as she had to go to school. I wish she had an off switch I could use instead of having to yell 'STOP IT' at her 10 times to get her to stop. And its not just arguments that I can't stop by saying stop, she does it on her bike too (and then rides smack into something), or in other dangerous situations you need her to stop Right Now. I've had to physically stop her quite a few times. I dread her being old enough to want to drive ... she'd ignore the instructor completely and drive into a truck.

    Her latest school report for ONE subject actually agrees with me though! 'doesn't listen or follow instructions' and 'talks too much' - its not just me! The ONE subject at school that isn't academic but has rules the teachers are actually noticing she can be a pain and aren't falling over themselves fawning at how smart she is!

    She's also not very good at maths but we've known that for a long, long time. Maths has right and wrong answers. You can't re-order things each time like you can in a language-based subject, or just make up your own creative answer and expect a high grade for being different. We stopped playing maths games with her at home or in the car some years ago as she didn't like to actually answer the puzzles and we'd get into arguments with her.

    Oh and her school reports at the old school used to constantly bring up conflict resolution as something she isn't good at (clarification revealed the same issues as at home - she is right and needs other kids to agree with her Or Else), but it hasn't been picked up yet at the new school, probably because there's more students to supervise and she hasn't yet done something as dramatic as sock another kid in the face and give them a split lip like she did at the old school. She's the pretty, smart kid. She can do no wrong. Grrr. They'd come down harder on her if she wasn't the #1 kid in her class and I still can't forgive her last teacher for saying she was the #1 WITHIN EARSHOT. Kids don't need to know that kind of stuff. Parents don't really need to know either ... there's more to life than academia.

  8. #170
    Registered User

    Dec 2007
    Adelaide, SA
    896

    ok Ladies I have managed to fill out forms etc and lodge with centrelink. I have been accepted for Careers allowance but not payment, and am now protesting that they back payed me 2 days instead of 12 weeks. I had to wait for reports to come in so it took longer then there period, but this was not explained to me.
    In the process now of registering for Disability SA and am still waiting on a report from an assessment we had , its been over a month now and I am growing impatient.
    The reasons are:

    In 2 weeks Hamish will get a new teacher, without the reports and the help of Autism SA there is no support in place for him at school.
    His behavior this week last week has been really bad, he has received steps at school every day last week. At home he has been unable to concentrate and has started pooing his pants again.
    So basically I am trying to jup through all the hoops i can but my hands are tied till we get this report. I am wanting to book Hamish in for OT and was hoping the back pay would help pay for a bulk lot of visits,,,,,,,,,,,grrrrrrrrrrr

    I thought that getting the diagnosis was the end, but in reality its the start of another roller coaster ride.

    Sorry for my rant, I am tired and feeling yuck today and a little helpless. Trying to look after my other children as well as Hamish. Its lik I have two toddlers at the moment...

    on a side note has any one had any success in a change of diet etc...

  9. #171
    Registered User

    Oct 2006
    Sydney NSW
    4,837

    Whilst Riley isn't ASd only sensory I noticed a big change when we removed 320 from his diet, it really effects him but most of the other failsafe stuff he didn't change much.

  10. #172
    Registered User

    Apr 2010
    1,118

    We have virtually no additives in food in this house so there isn't much to change. I'm allergic to a common additive so we make most of our food from scratch. Both the little monsters go monstrous when you give them lots of sugar, no surprises there. If we could work out our quirky little communication issues - something we the adults do need professional help with as it really doesn't come naturally, and I freely admit we have issues - we'd have the perfect child. She is otherwise quite well behaved.

    The assessment process is slow, isn't it? We've gone from GP to a general counsellor (who was useless) to one paed to the second paed with some very cathartic venting to the child and youth mental health mob (who basically said 'you need to see someone and get her assessed properly'), and that process alone took well over a year. We sent back a bunch of forms and whatnot some time ago, both self-filled and from her teacher, and I have no idea what happens now. I assume they are going to get back to us next, this has all fallen by the wayside a little with the new baby arriving.

    I used to be on another forum where I (mistakenly) vented before I really knew about aspergers and wanted ideas (some help, sympathy and support would have been nice too), I got seriously howled down and told how much I must hate her and to 'just go get her assessed' as if it would be an overnight thing where you just pop out to see a paediatrician like you'd see a hairdresser and get your kid pigeonholed and rubber stamped in a happy little hour long appointment. No, its a really slow process, and thanks for nothing ladies. It seems much more supportive here.

    ETA: I think I need to hire Lulu as a translator. She seems to actually know where DD#1 is coming from. I've never really hit that in an adult before.
    Last edited by deletedit; August 2nd, 2010 at 06:05 PM.

  11. #173
    Registered User

    Oct 2006
    Sydney NSW
    4,837

    Lulu is the guru Rumpled elf.

    I am so frustrated at the moment at the education system, I have been trying to get extra help for the ASD boy in my class and have recently found out the missing link between me and the funding support occurred within my own school FFS! The woman from district office is great but because I have to follow a "chain of command" so to speak I get stuffed around.
    Then I wanted to go to an all day inservice on ASD and the (insert swearword) boss said it was too much to replace me for the day and pay for the course. HOW THE F am I supposed to give this boy the best I can give if no-one will help me???????

    Sorry for the vent but I think what happens next year when he has a teacher who has no idea about any of this. I am "lucky" in that heaps of the OT Riley does is relevant to school.

    My book arrived from Borders today - Fun with the out of sync child, I am looking forward to starting it later when I get some peace!

  12. #174
    Lucy in the sky with diamonds.

    Jan 2005
    Funky Town, Vic
    7,070

    Nah, Christy is the guru......but I am a good interpreter

    RE - you can cut out about a year of head/wall/desk banging if you go straight to a Paed that specialises in Spectrum disorders. I't's been my experience (and well as a few others I've met) that anyone 'general' really doesn't have a clue. Tothe point we have been told our children are NOT on the spectrum when later (and proper) tests showed they bloody well ARE. Just like we thought.

    Mrsmac - has Riley been fully assessed? I don't think you can write it off as just sensory until full testing has been done babe. I was nearly completely convinced Mitch was only sensory....until school started and then I KNEW those dorks were wrong.

    Aspergers itself was only really recognised around 1994. It's not really a long time at all

  13. #175
    Registered User

    Oct 2006
    Sydney NSW
    4,837

    Christy is awesome also!!

    Riley has only been assessed by 2 OTs who specialise in spectrum kids (and informally by Christy LOL) I sometimes think he definitely is then other days not. There is a great paediatric psychologist near here who has been recommended to me so I may take R to see him.
    He starts speech next week, our early intervention teacher who has observed him thinks he might have verbal dyspraxia so I am interested in what the speechie says.
    I know its awful to whinge but it all costs so much, we had to stop the 1st Ot cause she only did 1 hour sessions and they were $122, we got $55 back even with a healthcare plan, thank goodness the new OT works in 1/2 hours and is cheaper (and closer) She is lovely, I have known her through school and another mutual friend for a few years- she was actually on Come Dine with me Australia!! (she hated it, they portrayed her sooo badly she got hate mail LOL)

  14. #176
    Registered User

    Apr 2010
    1,118

    The first paed we saw was useless - and it was a very short appt - but he referred us to the other guy, who seems good, but I haven't heard back from him yet. Probably a busy man. He thought she had elements of aspergers and oppositional defiance whatsit but wanted us to do an educational assessment as he thought some of her 'problems' were to do with being gifted and wanted an IQ test etc. The midwife I have visiting said the second fellow is really good. She had a look in DD#1's room while she was there and boggled at her castle - it is this massive lego thing, and all the pieces have been meticulously sorted by shape and colour lol

    Must be a bit better having one parent who is on the spectrum, even slightly, because you'd have more of a chance of seeing things their way. Self and partner are definitely not on the spectrum, but in hindsight my ex is seriously on the spectrum but has never been assessed. He's beyond weird. What little contact I have with him (and it is *very* little contact) is irritatingly frustrating, repetitive, nitpicky, verbose and generally is *exactly* like trying to talk to her, except she's a child and he's supposed to be an adult. I broke up with him in 2000 (yes, I realise she was born in 2001) and he only started getting access when she was about 3 so its nature, not nurture that gives them both the same quirks.

  15. #177
    Registered User

    Oct 2006
    Sydney NSW
    4,837

    There is an interesting article in the Readers digest written from the POV of 3 adults with ASD.

  16. #178
    Lucy in the sky with diamonds.

    Jan 2005
    Funky Town, Vic
    7,070

    So Christy would have told you about all the cashola available if he did go through a formal process and was diagnosed?

    Even if she has I will repeat it for the benefit of everyone because it's really important for people to know about it.

    If you end up with an aspy dx, you get (for the under 6's) $12,000 to spend over the period of 2 years on ALL the therapists you will need.

    I wish wish wish I had done it earlier (and $$$ was a huge problem for me), because now I can see all the things available to him, I can see what a HUGE difference it would have made. One year of the things I have only just started with him, could literally have been the difference between a slightly bumpy transition to school and where we are now. With me having to homeschool DS until we can 'catch him up' on the emotional side.

    I'm pretty sure there is also a 'helping to get diagnosis' type medicare rebate available if you suspect Autism/Aspergers.

  17. #179
    Registered User

    Oct 2003
    Forestville NSW
    8,944

    Sorry guys... sick and exhausted.... will come back tomorrow and answer questions... and thanks Lu!

  18. #180
    Registered User

    Oct 2006
    Sydney NSW
    4,837

    Yeah I know all about the cash, T in my classes mum told me about it. Its also annoying that ASD children get teachers aide time at school but heaps of other probs get none. (not that I begrudge them the time they need more its just that so do other needs)

    Lu- did Cyclone go to preschool ? R has been going this year and at the start his teacher really suspected ASD but now she says she thinks its a language prob. What did his preschool teacher's say ?
    I think I need to call and make an appt with the paed pscych just so I know for myself once and for all and also to get R all the help he needs. Thanks Lu for making me take my head out of the sand LOL

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