autism/aspergers
Printed From: OHbaby!
Category: Support
Forum Name: Parenting a child with special needs
Forum Description: A place for those parenting children with special needs to find support and share their thoughts
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=24819
Printed Date: 21 November 2024 at 9:22pm Software Version: Web Wiz Forums 12.05 - http://www.webwizforums.com
Topic: autism/aspergers
Posted By: Northlander
Subject: autism/aspergers
Date 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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Replies:
Posted By: james
Date 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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Posted By: Northlander
Date 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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Posted By: .Mel
Date 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:
http://www.cnn.com/2008/US/04/02/mccarthy.autsimtreatment/index.html - Jenny McCarthy
http://www.oprah.com/slideshow/oprahshow/oprahshow1_ss_20070918/1 - Oprah
*lurking out*
------------- Mr Mellow (16)
Miss Attitude (8)
Destructa Kid (3)
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Posted By: james
Date 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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Posted By: Northlander
Date 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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Posted By: Northlander
Date 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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Posted By: Chickaboo
Date 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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Posted By: james
Date 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
------------- <a href="http://lilypie.com"><img src="http://b4.lilypie.com/nLJ5p13.png" alt="Lilypie 4th Birthday Ticker" border="0" /></a>
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Posted By: Northlander
Date 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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Posted By: Northlander
Date 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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Posted By: Northlander
Date Posted: 28 February 2009 at 12:03pm
chickaboo my son with aspergers is also named josh
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Posted By: susieq
Date 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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Posted By: susieq
Date 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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Posted By: kiwigal
Date 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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Posted By: james
Date 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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Posted By: Northlander
Date 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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Posted By: Chickaboo
Date 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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http://lilypie.com">
876
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Posted By: Chickaboo
Date 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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http://lilypie.com">
876
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Posted By: james
Date 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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Posted By: freckle
Date Posted: 02 March 2009 at 3:02pm
I have just been lurking in here as Autism has been a special interest area for me in both my work as a speech language therapist and in my research... hope you guys don't mind me putting in my 2 cents...
I imagine it is a very frustrating situation for parents waiting for early intervention services (such as speech language therapy) for children with special needs - it is also frustrating being a therapist restricted in who and how often you can provide services as it is dictated by the level of funding that is provided to early intervention services... It is an unfortunate situation that typically only children with high needs get a funded service and that children with mild and moderate needs are often only provided advice, guidance and maybe monitoring. However, this is generally the restrictions placed upon the field staff (e.g. therapist, psychologist) by the service providers funding.
Jodie - it is so hard to get a service, esp if you live in a remote area? Have you looked into private therapy? If your child doesn't meet the criteria for regular intervention through special education the options are a little limited as you have probably discovered. Has your wee man been accepted for intervention or is he being monitored at this stage?
... a little piece of advice I always give parents whether on a waitlist or wanting more help is to just keep on ringing and ringing - the squeaky wheel and all....
------------- mum to 3 lovely girls :D
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Posted By: Maya
Date Posted: 02 March 2009 at 4:59pm
I've been lurking too, my Sienna is a little bit 'special'. She's definitely not autistic, she is verbal and can engage with others, the best way I can describe her is just "special". She was verbally delayed which was put down to poor hearing, and this may be true as since having the second lot of grommets done her speech has improved drastically but isn't very clear and often requires me to interpret for others. She's due to see the speech therapist again.
She doesn't cope well in situations where she can't anticipate the outcome, or where things aren't the way she expects them to be. When our nanny went away for nine weeks, she spent the first 3 weeks pretty much refusing to speak to anyone and lashing out at the temporary nanny.
We have regular sessions with a clinical psychologist at the Kari centre with both her and Mercedes and they are keeping an eye on her, she has improved a lot over the past three months but she is still really hard work. She has lots of seemingly irrational fears - for example, she could hear roadworks outside and even tho I took her outside and we couldn't even see them she still insisted that we shut ourselves in the kitchen to get away from the 'man'. When we went to Oz at Xmas she bailed up at the door of the plane and I didn't think she was going to get on for a minute there but we managed to drag her on. She flatly refused to go in the airplane toilets tho.
We've also had major sleep issues with her, she'd wake and scream for hours unless someone lay in the room with her, and even now she's over that she still wakes and sits up in bed staring into space for up to an hour at a time, sometimes longer.
On the plus side, she is really empathetic, if she thinks anyone else is hurt or upset she gets really concerned. And she loves Chiara, she spends far more time playing with her than the other two do.
At the moment the psycholgist says its just a case of waiting to see how she develops as she gets older. IMO she seems to be getting easier to manage but I don't know if that's because she's getting better or because I'm getting better at knowing what she wants and how to avoid her 'meltdowns'. I can tell by the way she wakes up in the morning how the rest of the day is going to go - some mornings she literally wakes up screaming.
The hardest part is knowing how much I should indulge her behaviour, and how much I should expect her to be able to get over it - like should I accept her fear of the 'man' and sit in the kitchen or should I tell her to get over it and go about whatever it was I was doing. It's also hard trying to negotiate her needs around the other three coz she is very clingy and quite egocentric at times.
I don't even know if this is the right place to put this, it's really just a ramble.
------------- Maya Grace (28/02/03)
(02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: Chickaboo
Date Posted: 02 March 2009 at 7:35pm
Emma 0 Josh's biggest thing I guess apart from the speech was handling change. which sounds like seinna. really had to pre warn most things outside of the home (change inside the home didn't bother him at all) School they told him if they could at least 10 minutes before they were going to do something different (he also had a little story board when he was in year 3 as to what the plan for the day was on his desk)
Rhyley is very sensitive to noise - hates the lawn mower, or any power tools and it took till he was around 1 1/2 years before I could vacumme without carrying him. Hes now ok with it as long as i warn him "I am going to turn this on now and make a loud noise' the lawn mower at first he will hide inside - as in come inside and wants the door shut, but the other night he took 'his lawn mower' out and was walking right next to Josh doing it. - but by all means I know he doesn't have autisum Just a wee bit sensitive to certain noises.
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876
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Posted By: Maya
Date Posted: 02 March 2009 at 8:30pm
That sounds exactly like Sienna. She freaked out in the carpark at Sylvia Park once coz there were construction workers there and she could see their vests. I try to prewarn her but that's hard coz at two they don't have the best retention!
We went to St Lukes the other day to have sushi and the Godfreys shop is right next to the sushi place, about ten minutes in she realised what it was and she got really edgy and she was like "cleaner, cleaner", not screaming coz none of them were turned on but she was still really, really uncertain.
------------- Maya Grace (28/02/03)
(02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: freckle
Date Posted: 02 March 2009 at 8:55pm
Emma, sounds like you have got the help you need with Sienna... must be hard just having to wait and see how she goes but it sounds like you are doing all you can to help her!! Often after having grommets inserted language does increase significantly - however it will take time for her to master all the speech sounds as she has obviously missed out on lots of listening opportunities when she has suffered ear infections. At 2 and a half speech and language intervention often focuses mainly on increasing language rather than improving speech sounds.
Do you think the sound sensitivities you have observed are possibly related to her improved ability to hear now that the grommets are in place?
With regards to how much to indulge certain behaviours have you discussed it with the psyc?this is one of their areas of expertise so she may have some advice?
------------- mum to 3 lovely girls :D
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Posted By: Chickaboo
Date Posted: 02 March 2009 at 10:36pm
freckle wrote:
Do you think the sound sensitivities you have observed are possibly related to her improved ability to hear now that the grommets are in place?
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I actually thought of suggesting that frecle as well - if you can imagine not hearing then suddenly all these noises and we most can handle but the louders one perhaps frighten her... As for Rhyley he never had gronnets nor any problems with his hearing (that i know of) i just think he has heighented hearing (if such a thing) Infact pluket hurse commented on his hearing being hieghtend (sensitive??) because he heard a lawn mower which was ages away.
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http://lilypie.com">
876
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Posted By: freckle
Date Posted: 02 March 2009 at 11:34pm
Yeah chickieboo I don't think it is that uncommon - I have come across a fair few kiddies in my work with sensitive hearing as you describe, and I think when it occurs in the absense of any other symptoms it's nothing to get concerned about... I do imagine it being a little disconcerting for him though??
------------- mum to 3 lovely girls :D
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Posted By: james
Date Posted: 03 March 2009 at 7:41am
hi emma does sound like shes very senetive james is to but its more towards feeling texture of foods he wont eat fruit hates the texture he also has problems with interacting with outher kids
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Posted By: susieq
Date Posted: 03 March 2009 at 8:09am
Kate is 23 but developmentally about 6 she does talk, alot of the time not clearly
and was diagnosed also with dyspraxia in the early stages, does not like loud sounds like fireworks, fire engines, fire alarms, she loves going to Xmas in the park at the Auckland domain but when they have the fireworks she hides under a blanket, she too isnt a great eater, wont chew chicken, likes easily chewed things like mince, weetbix, sausages, wont eat fruit except canned peaches
She was mainstreamed at primary but in her second year there used to to Carlson school for cerebal palsy a couple of days each week, the speech language therapist at her mainstream school is the one who diagnosed her with dyspraxia.
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Posted By: Aquarius
Date Posted: 06 March 2009 at 12:36pm
hi guys...
sorry i have posted in an autism forum before but it didnt move along very quick and to be honest i cant find it now..lol
my youngest son (8) has autism and was diagnosed at 2yrs old...so i feel like i have been through enough to help others and share my views, in fact it is a bit of a passion of mine now as it is my main job since i left work when he was 3 to be there for him.
i watched oprah too. to be honest i didnt agree. i personally think opposite to them...my child doesnt have autism, he IS autistic. there is no cure.
in saying that it can become very managable and they can learn and things you thought they will never do, they do. life for us is a little different but the secret is to go with it. accept they are different and dont try to mould them into what they should be like. think outside the square.
he makes us laugh daily!in fact we wish sometimes we were a little like him cos hes honest and doesnt care what people think, which can be embarassing at the best of times!
we have tried diet change which caused major problems. we got involved with special ed at kindy andhe has had a teacher aide since. he has been at main stream school with the help of his aide and ORRS funded. this funding ran out at the start of the year (very distressing) and let me warn the ministry of education have alot to answer for! Autism doesnt seem to fit much of the catagories they have so alot of autistic kids get looked over and left up to schools to care for them.
this has been my biggest fight so far. it is sad cos there biggest diability for them is the fact they look fine. and sometimes have good days..you know
i could go on forever.....if i can be of any help to any one please PM or email and i would love to share more. i am from auck but moved to Chch last year (one of the reasons for our move was to be closer to the national office of Autim NZ.)
------------- http://www.magicalkingdoms.com/timers/">
mum to mr 16 & mr 10
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Posted By: james
Date Posted: 07 March 2009 at 8:08am
thats my prob with dyspraxia most pwople dont take it serouls anuff james looks just like anyouther kid soo aloty people dont relise he does need help in certian areas and has troble with things
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Posted By: Northlander
Date Posted: 10 March 2009 at 10:03am
hey Aquarius
does your son have a teacher aide now? if so how many funded hours is he getting.... special ed only giving my son 7 hours they told me the max they give is 10 hours?? he is on the verge of being put/taken out of school, he is only 5, only goes to school 3 days at the moment and as of yesterday has be banned from the school bus
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Posted By: james
Date Posted: 10 March 2009 at 2:29pm
jodie thats horrable why have they banned him from the bus it sounds rather xtrem to do that to him james has got a teacher adie she is with him 3 hours a week i havent meet her (bad mummy) is your son relly stuggling when his teacher isnt there
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Posted By: mum2paris
Date Posted: 10 March 2009 at 9:29pm
Hey guys i'm going to join in here as i am always helping out mum with my nephew who is in the process of being diagnosed... it's all very on again off again with him and apparently she was told no they don't think he has aspergers, however, in seeing him and mike's cousin who definately has been diagnosed as such, i find it hard to find differences.
How hard is it to get funded hours fro schooling? my nephew has just turned 4 and i already told mum that she needs to get on top of things very quickly in regards to that as i have heard it can take alot to get funded hours for them.
The other side of this is that they think he may have foetal alcohol syndrome, however i am not so sure, from what ih ave seen he shows alot of signs of aspergers more so than FAS.
He is overly sensitive to noise, used to just squeal all that time at new noises, hates the radio on and will still freak out in situations where there are alot of people. He is coming along very slowly with speech - which has really only just started developing into more than a few words a few months back, mum and i can understand him most of the time but most others can't. he is not good in social situations, loves my girls but very quickly will turn extremely violent and has really hurt the girls quite a few times - the unfortunate thing is i have had to teach them to look for signs that things are going a bit wrong to enable them to move away when they think he's starting to get a bit rough as it progresses from there to outbursts.
attention - he needs it, relys alot on my mum, often comes up to her and says "i need you nana" then off he goes again, he is fine when she is doing things with him, but literally if she even stops to take a breath, or answer the phone, he's slamming doors, opening and closing the oven again and again, until she comes back to him then he's happy as larry again.
Routine is a big thing, he does the same thing in the same order every day, new things scare him, he too needs to be talked into things over a number of weeks when they are going to happen or something is going to change. he is mad for trains, obsessed really, and has recently become fascinated by wheels, anything with wheels which has become dangerous as he always wants to "watch the wheels" - literally wanting to sit at the curb and just watch the wheels of cars going past or of peoples cars when they leave....
Logically though - you give hima puzzle, any puzzle, of the large jigsaw kind - and he can tip it out and do it by himself very quickly, far harder puzzles than my girls can do - mum tends to get him alot of puzzles to keep him busy as he also get bored of ones he has done a few times - they are no longer a challenge to him.
it's frustrating seeing all the stuff she's going through trying to get him help. even respite care has fallen through. I used to be able to handle looking after him but last time i did i barely got through 2 hours before going nuts!! i felt so bad but i had to get out of there, as soon as mum came home i was gone. I have no idea how she does it day in day out at her age.
I do worry though as he's getting much worse with his outbursts and violent behaviour - i worry for her and for my girls as he's not a small boy, at only just 4 yrs old he's already taller than Paris (5 and a half), who isn't short for her age. I kinda just worry that with his growing size and strength - there's going to come a day where he starts to lash out at mum instead.
------------- Janine and her 2 cool chicks, Paris & Ayja
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Posted By: james
Date Posted: 11 March 2009 at 7:34am
hi jannie yep its hard to get help but you have to know were to look aswell -james teachers at childcare strated the ball rolling to get james help but as your newphew is,nt in a childcare it can make it hard, the frist place i would think would be his doctor epesslly if he is getting increaseing in voilet episodes. once they hit 5 it is up to the schools to get them the help they need, big hugs for your mum and you
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Posted By: mum2paris
Date Posted: 11 March 2009 at 9:39am
Hi there Luana, thanks for replying.
He does go to daycare 3 days a week, however up until early this year he was at one that was not good (has since closed down... enough said) mum had him there for convenience as she doesn't drive and it was 5 mins walk from her house and i was forever telling her when she said about things that were going on that she needed to move him!! so really alot of the help that he needed and could have gotten, was really missed out on so now he's at this point and the new daycare is trying to pick up the pieces, he has referals to SES, and should have special help but this is very very slow in coming so far.
Terribly frustrating, I am kinda angry at mum for that reason that she kept him at a terrible daycare just because she didn't want to walk an extra 10 mins to drop him off (which she now has to anyway) where he was not well looked after, and where he was yelled at, excluded from things, and generally manhandled, etc, which i think has contributed to how he is now. however such is the attitude of alot of my family.
------------- Janine and her 2 cool chicks, Paris & Ayja
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Posted By: james
Date Posted: 11 March 2009 at 11:52am
aww poor boy at least he is at a deff childcare it took around 6 months for james to get a surport teacher and he is only allowed 3 hours a week we have a surport person though SES but everything is very solw at happing i feel yor fustration jannie its horrable when it gos soo solwly . we had to wait 6 months to get in vera haywood for his dignosise big hugs
------------- <a href="http://lilypie.com"><img src="http://b4.lilypie.com/nLJ5p13.png" alt="Lilypie 4th Birthday Ticker" border="0" /></a>
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