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Northlander View Drop Down
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    Posted: 26 February 2009 at 10:28am
hey, i feel its a real shame parents are not using this part of the forum more, as support and knowing you are not alone is great help.

i have four children my 5 year old boy has aspergers and i have a 3 year old boy with autism he is non-verbal... have family history of aspergers one being my 20 year old brother.

would love to hear from anyone else with children/family of these disorders even older children, even more so someone with a nonverbal child themselves.

thanks
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james View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote james Quote  Post ReplyReply Direct Link To This Post Posted: 26 February 2009 at 2:36pm
hi there i,m lu and my boy(james) has dyspraxia vocal and moter it comes under the autism secpemtue. james was pretty nonverbal before his dignoses but has come a long way in 20 months with regula specch and ocurpational therepy it has been along hard road i hve found i got quite down and some days are harder then outhers
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Northlander Quote  Post ReplyReply Direct Link To This Post Posted: 26 February 2009 at 2:49pm
hi, my son got referred to SES for speech therapy 12 months ago and he has seen the lady 3 times
when he was one he had 2 words and by 1 and a half the words were gone and he hasn't spoken yet

hes a easy child (well kinda) but the biggest problem I'm having is no communication, and hes now finding it frustrating
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.Mel View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote .Mel Quote  Post ReplyReply Direct Link To This Post Posted: 26 February 2009 at 8:42pm
*lurking*
I was watching Oprah today and they had Jenny McCarthy and Holly Robinson on, both have boys who were diagnosed with Autism. Jenny was talking about her sons road to recovery, she took gluten and wheat out of his diet and within two weeks he started talking again. It was such an interesting show. I hope you get the help and support you need from the proper authorities.

Heres a link to her book:
Jenny McCarthy

Oprah

*lurking out*

Edited by .Mel
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james View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote james Quote  Post ReplyReply Direct Link To This Post Posted: 26 February 2009 at 9:26pm
hi jodie thats relly bad james sees his speech thepery at least once a fortnight and the outher on the outher week have you got hold of the autima surport groub also parent2parent are relly good resorse for us parents they can send you heaps of advice i would get hold of your speech therist and demand more help they should be helping him and you much more. also with the fustrtion its a big thing still in our house it has gotten better with james talking more but its still there
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Northlander View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Northlander Quote  Post ReplyReply Direct Link To This Post Posted: 27 February 2009 at 9:42am
yes well it all started haha .... my son got referred to speech therapy jan 2008, the lady he was referred to said she didn't need to see him because he waved to her lol, ok, about 7 months later (julyish) when i saw the psychologist and told her about the speech therapy she put a complaint into the head of SES, then about a week after that i had a ring from a different speech therapist telling me the other one didnt want to deal with my son anymore so she would be taking over, and I've seen her twice in in about 7 months, both my children have been referred to parent2parent and also the autistic association, but i havent heard from them and when i ring no one can ever help me
i really do live in a bad area for help is my biggest problem.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Northlander Quote  Post ReplyReply Direct Link To This Post Posted: 27 February 2009 at 9:51am
hi mel

i hope not to offend you, but i find it really hard to accept changing diets and things like that would in anyway change an autistic child, and i find it really unfair people who say that make false hope (not talking about you )

its a problem with the brain, like little floating wires that would normally connect somewhere but haven't

i have read a couple of books about how parents cured their autistic child in 2 weeks with special diets, but in my opinion they obviously didn't have autism in the first place

If that was the case autism with be cured in every case, but none are.

As every website says right down to Tony Attwoods
Autism has no cure.

Sorry this is not meant to sound rude or put you down everyone has the right to their opinion.
And maybe its something other parents could try
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Chickaboo Quote  Post ReplyReply Direct Link To This Post Posted: 27 February 2009 at 8:32pm
ok I don't advertise the fact and not because of being ashamed (far from it) but because I feel now its up to Josh to let people know if he wants to.. But he is high functioning Aspergers.. he is 15 now and you really wouldn't know he has it. but was more obvious he was 'different' when he was younger as he would react to things very differently - minor thing would be major etc...

he also had to have speech theraphy which was slow going a times (like you jodie.s.) some times I wondered if they were still going to do it.. Although he talked and i knew what he was saying most people had a hard time understanding him. Now although he talks with and accent (English as my parents have a broad accent and i lived with them till he was 4) He is very understandable.



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james View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote james Quote  Post ReplyReply Direct Link To This Post Posted: 28 February 2009 at 8:39am
omg jodie that spceeh person is horrable is.nt it there job to help ,have you tried to go back to you gp maybe they will be able to find someone to help. james goes to the vera haywood center which has all his therepys in the same cente,r they are wicked there stright on to helping james with his speech and moter probelms . there is no cure for dyspraxia god i wish there was ,james will have to find ways to cope around it which he will. . big hugs jodie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Northlander Quote  Post ReplyReply Direct Link To This Post Posted: 28 February 2009 at 11:59am
chickaboo, my brother with aspergers is now 20, we dont make public his disability but we dont hide it either, like your son you would never pick something wrong with him, unless god help you you got into a conversation with him haha
its all one sided (his side of course) and all electrical. thats his interest.
my brother was also speech delayed, and it bugs me, because when i see doctors/psychologist etc with my autistic son they are say hes not aspergers because of his speech delay, BUT tony attwoods book says speech delay is common in aspergers and if they have a speech delay they will usally talk between the age of 5 and 7, tony attwood diagnosed my brother, im sure you will have heard of him?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Northlander Quote  Post ReplyReply Direct Link To This Post Posted: 28 February 2009 at 12:02pm
hey james, thats the joys you have when you live in a small rural, low economical area
i aim is to find a psychologist in auckland or somewhere, where they would have alot of experience in children like my son, and get some real advice and an idea of what i am in for, whats helps, and what to expect etc
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Northlander Quote  Post ReplyReply Direct Link To This Post Posted: 28 February 2009 at 12:03pm
chickaboo my son with aspergers is also named josh
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Post Options Post Options   Thanks (0) Thanks(0)   Quote susieq Quote  Post ReplyReply Direct Link To This Post Posted: 01 March 2009 at 8:49am
jodie.s pm me . where do you live, if you are in South or East Auckland I could send you a newsletter from our group
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Post Options Post Options   Thanks (0) Thanks(0)   Quote susieq Quote  Post ReplyReply Direct Link To This Post Posted: 01 March 2009 at 8:49am
I have a specail needs daughter with developmental delay and i suspect traits of autism(23 years)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kiwigal Quote  Post ReplyReply Direct Link To This Post Posted: 01 March 2009 at 10:26pm

My son was diagnosed with autism at 22 months he is 6 in April but his speech therapist through the school thinks he has got dyspraxia more than autism. He is non verbal but he has got a few single words that he does say, he knows how to count, write words and can add.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote james Quote  Post ReplyReply Direct Link To This Post Posted: 02 March 2009 at 7:53am
hi kiwigal dyspraxia is a form of autism so the speech therepist is right in a way james has come a long way but as you ladies know it hasnt been easy. you also cant tell with james the only reason you would think something is wrong if you talk to him hes speech is very mubleed and when he tries new things
jodie that relly suxs you would think you woukld get the help anywere aggrrhh so very annoying

I,m still in the my poor baby stage even though i have know for about a year about his dyspraxia its quite hard at times but hes my baby so ui kkep going
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Northlander Quote  Post ReplyReply Direct Link To This Post Posted: 02 March 2009 at 10:57am
hey kiwigal, at what age did your son start to speak?
and how old is your son james?

i dont know much about dyspraxia, well i didnt know anything until i looked it up today

and susieq, how is your daughter doing now?

is everyone here happy with there childs diagnosis?
meaning its the right diagnosis, not that your childs different
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Chickaboo Quote  Post ReplyReply Direct Link To This Post Posted: 02 March 2009 at 1:39pm
At first James I looked for reasons why Josh 'wasn;t' aspergers - but then the signs he did have were loud and clear. The autisum spectrum is so vast its hard to know where your child fits on it.

yes have heard lots about Tony attwood -his books are very good.

Jodie i also live in a lil town so I guess sometimes the big centres get all the help and better qualified people.


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Post Options Post Options   Thanks (0) Thanks(0)   Quote Chickaboo Quote  Post ReplyReply Direct Link To This Post Posted: 02 March 2009 at 1:42pm
Its also great that most of your kids have been diagnosed early on - it wasn't till a year into school that they suspected Josh had aspergers.

Also i am sure you all should know but don't forget you can get a child disability allowance from Winz. Its around $80 a fortnight. Not sure whats going to happen next year with that when Josh goes to polytech but I am sure he will still get it until hes working or 18 years??!! Anyone know?


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james View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote james Quote  Post ReplyReply Direct Link To This Post Posted: 02 March 2009 at 2:18pm
james is 3 and a half his childcare were worried as he wasnt talking only said mum and thats about it. i also thought something was going on but didnt quite know what. his teachers referred him to a speech therepy and it was a aunther 6 months before he was refurred to the vera haywood center who dignosed him with dyspraxia vocal and moter as i said we have come a long way i dont treat james anydeff to outher kids but help him with his speech . M y big thing is when he goes to school as he is quite shy and although i can understand him outher kids wont and i am worried he might get teased
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