Autism Spectrum Disorder
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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=26247
Printed Date: 17 May 2024 at 2:33am
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Topic: Autism Spectrum Disorder
Posted By: emmaohara
Subject: Autism Spectrum Disorder
Date Posted: 01 May 2009 at 6:57am
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Hey ladies
I have a nearly 3 year old who shows lots of the signs of being on the range of autism. He always plays by himself, hates new things - like food, and loud noises, only interacts with adults, lives in his own world most of the time babbling nonsense to trees...! etc etc We have been advised to have him assessed at the hospital. I was wondering if anyone out there has done this and what actually happens. I spoke to a friend who works in this division and she was in two minds over ben as he also shows signs of being 'normal', ie makes eye contact and is very affectionate with family etc and she said not to have this done until he is at preschool in august DH wants me to go so we can learn how to help Ben cope with social interactions and focusing on us but I am not sure if he is too young for all this? I guess I'm still hangin out there that this is just a long phase hes going through..... and suddenly he will want to be social..but he is 3 soon.... Any help or advise would be awesome  ------------- http://lilypie.com"> 
http://lilypie.com"> 
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Posted By: Bizzy
Date Posted: 01 May 2009 at 8:50am
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they may not be able to tell much at that age... i know at that age my older boy spoke nonsense all the time, prefered to be by himself, was great at keeping himself busy tho, seemed to lack any knd of focus....and if i read up on it i would have found he displayed some characteristics too. the spectrum is very wide tho and not all have trouble with eye contact etc. maybe you could talk to the person who advised you to get him assessed (i'm assuming its a medical professional) and see if they can give you more info ------------- http://www.myfitnesspal.com/weight-loss-ticker"> 
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Posted By: emmaohara
Date Posted: 01 May 2009 at 1:05pm
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Thanks Bizzy- today hes been soo normal, he even actively played with another kid ( well bounced on a bed with her..!) and answered clearly when asked a question...so no idea with him
its like if he wants to do he will, thats good to know other kids at his age are still talking nonsense, thinking the silly plunket lady has worked me up over him just being a bit different stressing me out about it all hmmm..guess time will tell with him  ------------- http://lilypie.com">
http://lilypie.com">
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Posted By: Maya
Date Posted: 01 May 2009 at 1:08pm
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They're generally quite reluctant to 'label' kids when they're this age, but if you have him assessed it will at least get him in the system, so they can follow his progress as he gets older.
I get a bit paranoid about my Sienna coz she has her "special" traits, but it seems most of her behavioural issues stem back to her ears - I thought she was getting even more withdrawn and angry than usual this week but it turns out she has infections in both ears which is kind of a relief coz at least that can be fixed! -------------  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: emmaohara
Date Posted: 01 May 2009 at 1:22pm
Yeah Emma the last thing I want is for him to be labelled and to be honest until the plunket nurse metntioned in last week i always thought he was a bit difficult at times and his language a bit slow but that he would just develope at his own speed..after this mornings awesome behaviour i'm just going to leave it till he starts montesorri in august and see what they say,as hes been talkative and semi- social so far today!! Long may it last!! ------------- http://lilypie.com">
http://lilypie.com">
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Posted By: Aquarius
Date Posted: 01 May 2009 at 1:28pm
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hi emmaohara..
yes ..take him and get him checked!!! my son was diagnosed at 2yrs of age..and he too was loving (cuddles) and had eye contact..but tyere was just something about him that we thought ...mmmmmm, sounds like you too are thinking that. the process is very easy..just list all you can think off to discuss with the doctor and i have to be honest here..DONT sugar coat it. two reasons... if he misdiagnosed and they say he fine and hes not you will miss out on valuble resources and information PLUS you will be back to this point in years to come.. if he is diagnosed and he is actually fine..no harm done! its nothing medical so that wont affect him his funding or/and resources can just be stopped and life goes on...its not evasive. do it now and dont wait till preschool because it takes time to sort and things may not come his way till school starts and that can be extremely stressful...my son had such an early diagnoses that by the time he ready to start kindy he had funding for teacher aide and all specialist help ready to go!! your doctor/paediatrition will point you in the right direction...good luck PM me if want more info  ------------- http://www.magicalkingdoms.com/timers/"> 
mum to mr 16 & mr 10 |
Posted By: emmaohara
Date Posted: 01 May 2009 at 4:03pm
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Ohh thanks aquarius ------------- http://lilypie.com">
http://lilypie.com">
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Posted By: BaAsKa
Date Posted: 01 May 2009 at 4:35pm
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my boy has finally been diagnosed with aspergers after a very lengthy stay on the waiting list!!!
The specialist said to us that there is very rarely 2 kids on the spectrum that will have the same traits so noone can say "no he doesnt have it bcos he doesnt do this or that" (there is a check list though but they dont have to have everything on it). We knew something wasnt quite right from the very beginning - he hated being around other people as a baby, wasnt interested in any toys at all and if you gave him a car he just wanted to pull it apart so see how it worked!! (and that was from VERY early on like 8 months!), he also rocked back and forth and shook his hands (like the moari wiri wiri) ...amoung a long list of other things!!. Bays plunket nurse picked it up at 2.5yrs and we said that we had suspected it. To the average person Bay looks perfectly normal and really - he is!! hes super intellegent, is very much into computers, space, planets etc and is managing ok at school, but there are the other things like - he will freak out in school asembly and hide at the back covering his face, his doesnt really get on with other kids, hes very literal, he finds it hard to take direction (not like a normal child his age!!! he will get confused about finding his shoes when hes actually holding them in his hands!!!!) and is VERY defiant over everything!!! I havnt got the hang of it yet and we are booked in to see an aspergers specialist who is going to help us learn how to deal with him. Anyway that was a huge waffle!!! 
I would definately get him checked out, i have heard of quite a few kids being diagnosed early! and if they say theres nothing wrong then you havnt lost anything by doing it. good luck
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Posted By: Chickaboo
Date Posted: 01 May 2009 at 8:02pm
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I agree with those who have said get him checked - as no loss really.. you;ve got everything to gain.
My 15 DS has high functioning Aspergers and hes is the most loveable. effectionate child - and this has been all his life. he also can look you in the eyes - he even has lots of friends who he interacts with all the time... BUT there was some 'differences' that set him aside. But thats my DS story (not all of it but a bit in a nut shell) and your Ds will have his own set of 'differences' So why not - not brush it off - get him checked and then you will know one way or the other (although we still sometimes think - does he have it ) ------------- http://lilypie.com">  
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Posted By: james
Date Posted: 02 May 2009 at 7:45am
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yes please go and get him checked my james has dyspraxia which is on the mild side of austsm. I alway had a feeling something was deff about james and his teachers at childcare were worried about him as well as he was,nt talking or following directions like kids his age. It took a year to find out what was wrong with him and to get him the help he needs. I dont see it as a lablle if i didnt have a name for this and couldnt get help how would that help him (relly if you dont have name for it how can you get the help for them). It has been the hardest jouney i have taken so far with james so many tears and hreatbreck for my son but at least he can get the help he needs. Big hugs hunn ------------- <a href="http://lilypie.com"><img src="http://b4.lilypie.com/nLJ5p13.png" alt="Lilypie 4th Birthday Ticker" border="0" /></a> |
Posted By: emmaohara
Date Posted: 02 May 2009 at 10:37am
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Ok thanks everyone and big hugs James, will ring plunket lady back monday at tell her I have changed my mind and get him assesed as you say i have nothing to lose ------------- http://lilypie.com">
http://lilypie.com">
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Posted By: james
Date Posted: 02 May 2009 at 11:05am
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yay well done your be fine big hugs
------------- <a href="http://lilypie.com"><img src="http://b4.lilypie.com/nLJ5p13.png" alt="Lilypie 4th Birthday Ticker" border="0" /></a> |
Posted By: Aquarius
Date Posted: 06 May 2009 at 8:04am
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oh baileyandastin..your story almost brings tears to my eyes....
yes they are tricky but boy are they clever....sometimes i look at him and think man if you were "normal" you would be too clever for your own boots.. Autism nz run a fantastic course for parents with preschoolers on the spectrum...called early bird. it is free ( with diagnosis) and runs once a week for a series of weeks i think(been a while) but it basically gave us everything we need to know to deal with Enson..plus the first chance to be among other parents at the same stage as us. its a real practical course with alot of discussions and projects to try. you are absolutely right about no two kids being the same on the spectrum..but if they do have several traits its usally a sign...then to be more difficult some kids may just have tendancies of autism. ohhh the world...good luck. ------------- http://www.magicalkingdoms.com/timers/">
mum to mr 16 & mr 10 |
Posted By: Babe
Date Posted: 06 May 2009 at 9:28am
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I have high-functioning aspergers and TBH I wish there were the resources around when I was little to help. I was 'labelled' in a different way - highly-strung, difficult, thoughtless, etc.
It really hurt my feelings and knocked my confidence as I really didn't understand (and still sometimes don't) what I was doing that people didn't approve of. I'd try so hard to NOT be those things but since I had so little control over those decisions, as my brain was working at a hundred million miles an hour, I wasn't very successful. It also really REALLY didn't help that I had an IQ of like a rocket scientist lol Its only now (and thanks alot to OB) that I can make friends with abit more confidence and not worry so much that people will put me down or not accept me. As someone dealing with the scars of NOT knowing what was different about me I think getting your boy assessed as early as poss is def the best move. -------------   
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Posted By: BaAsKa
Date Posted: 06 May 2009 at 10:11am
dont read my other thread then! lol it really is sad!!! stupid friggen school!!! 
The intelegent thing gets me sometimes, - when Bay was 4 we pulled up at home and had to wait in the car for the rain and thunder to ease so Bay asked what makes rain and thunder, i answered "its god moving his furniture and watering his gardens"...thats what my mum always told me so i thought id use it! lol well he gave me a funny look then replied "well that doesnt make any sense! because why would god be watering his gardens AND moving furniture at the same time!? you do them seperately!" ....oh man!
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Aquarius wrote:Posted By: Aquarius
Date Posted: 07 May 2009 at 7:43am
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dont get me started on schools and the whole education system!!! actually to be more precise Ministry of education have alot to answer for
this is why it is important to get an early diagnoses as my experience is things were easier when Enson was younger and now that he 8 and needs aide more than ever the MOE seem to just close the case...its bizarre. i am taking them on as we speak. dont they come up with the funniest things.... ------------- http://www.magicalkingdoms.com/timers/">
mum to mr 16 & mr 10 |
Posted By: james
Date Posted: 07 May 2009 at 8:23am
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we have just had a meeting with james ,ot and moe and a teacher from his childcare. james has come shuch a long way. we have come up with the idea that he may need his tonsil removed as he always has a runny nose and this might be wants casing it lol .also all working on his socail skills and with repation with puzzle ect . all in all a great meeting and we have a another in 6 months time ------------- <a href="http://lilypie.com"><img src="http://b4.lilypie.com/nLJ5p13.png" alt="Lilypie 4th Birthday Ticker" border="0" /></a> |
Posted By: Bubnumber2
Date Posted: 07 May 2009 at 1:01pm
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Hi, I agree with a few others...get him checked!
My son was 3 when he was 'officially' diagnosed with High Functioning Autism. Like your son, he still makes eye contact and can be very affectionate, but he is OBSESSED with things like numbers (has been able to count to 435 since he was 3...always 435, never higher) and he is VERY difficult to convince to try new things, like foods. He usually plays alone, shows no interest in other children and gets distressed with things like loud noises and bright lights etc. Our GP referred us to a pediatrician, who then referred us to another pediatrician who specialises with kids on the spectrum, as well as an audiologist. We also had to get him to have bloods taken (came back clear). It all took about 5 months from first referral to diagnosis. The good thing about getting a diagnosis early, is that you can start getting the help EARLY as well. There is so much help and support out there, like support groups, training things like EarlyBird (prepares the child and parents for school, so it has to be before age 5) and help from Special Education when your child goes to kindy/school...I've heard you get more special education help the younger they are... Good luck!! I'm gonna watch this thread now I think. ------------- http://www.bump-and-beyond.com/"> 
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Posted By: Aquarius
Date Posted: 07 May 2009 at 9:47pm
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great to read your IEPmeeting went well james. they will become so valuble and i love looking back at all of ours and realising just how far we have come.
Simple things like "Enson ONLY wears gumboots all year long" to him now owning many different types of shoes!!! i forgot he went through that period and at the time thought the worst but now its funny.... Bubnumber2...your story is similar to ours...how old is he now? and what is his support like if he at school? ------------- http://www.magicalkingdoms.com/timers/">
mum to mr 16 & mr 10 |
Posted By: kiwigal
Date Posted: 07 May 2009 at 9:47pm
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It is possible to get diagnosis around that age or even earlier in some cases. My son is 6 and was diagnosed at 22 months. Early the diagnosis the better it is in the long run. He is very complex as he has got some traits to autism but he doesn't act autistic as he wants to communicate and socialise. He is non-verbal with very few words, he is the most affectionate kid and loves being around other adults/kids. We treat him like a normal kid if he is naughty he knows what time out means or taking the computer off him. He is in a mainstream school. |
Posted By: Aquarius
Date Posted: 08 May 2009 at 7:47am
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yeah, absolutely kiwigal...are you meaning that you think they have it wrong??
my boy was diagnosed at 2...firstly had visit with our GP who then referred us to a pediatrition..that was pretty much it! the pediatrition then put us on to services such as Earlybird and respite etc..... these services are there for us to use at our discretion...so its optional. yes our monkey is mainstreamed too ( with help of teacher aide to keep him focused)its not that hes unable to learn what the other kidsare its just that he is sooooo distracted by any little thing. his other area of concern for us was when it was playtime and he was unleashed into the play area he doesnt mind other kids but most of the time he just looks right through them plus the bell would mean nothing to him...
he is also very affectionate...loves and is very good at the computer ( we too use that as a consequense) his speech gets better and better each year plus he too knows right from wrong and has taken us to skillfully distinguish when hes being 'naughty' or being 'autistic'....if thats understandable. he does enjoy being on his own alot...with his room being his cave. so if he attends school (which is only till 2 still) and does basic requirements of him around the house ( brush teeth, wash, put shoes/bag away, has dinner with us etc..) then we let him have his alone time no worries.. ------------- http://www.magicalkingdoms.com/timers/">
mum to mr 16 & mr 10 |
Posted By: Chickaboo
Date Posted: 08 May 2009 at 11:10pm
Isn't it funny that the autisum spectrum is so vast - I highlighted the words above in bold cause - my son is always communicate and is not shy with strangers at all. He has lots of friends and at lunch times plays soccer or rugby or whateveris happening at the time with a huge group of people. But when he was younger it was not so easy for him - one thing I found helped was letting him know that he was 'different' but then said everyone has a difference and so not a bad thing just sometimes other people do 'get him' and so be be aware of it more. My son has never had a teacher aid and has always been mainstreamed although i understand this isn't always the case for some IE: an autisitic child is in my daughter class adn there is no way he could be without a teacheraid as he is hardly to non communcating and has outbursts alot. And yes ds is very good with computers/gaming machines and electronics in general. One thing now that hes older is though its really hard to get him motivated on something - he is such a cruiser and always has been but now that he is getting close to ending his schooling he really has to motivate himself to get a job - he wants to be a policeman (bit scary considering recent advents in napier) ------------- http://lilypie.com">
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Posted By: susieq
Date Posted: 09 May 2009 at 9:03pm
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There is a DVD out on Autism now, was advertised in our local paper forget what it is called but if you ph the Autism place in Auckland they will put you in the right direction ------------- susie |
Posted By: susieq
Date Posted: 09 May 2009 at 9:05pm
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There is a DVD out on Autism now, was advertised in our local paper forget what it is called but if you ph the Autism place in Auckland they will put you in the right direction ------------- susie |
Posted By: emmaohara
Date Posted: 11 May 2009 at 7:48am
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Hey ladies, just popping back in, finally biting the bullet and ringing plunket today..finally spoke to my mum and she was in agreement to get him assessed..had been putting it off hoping she'd disagree but no!!, so waiting for them to open and ringing today
wish me luck...and a bit of strenght!! such a wuss bet I cry on the phone..too soft for my own good! ------------- http://lilypie.com">
http://lilypie.com">
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Posted By: james
Date Posted: 11 May 2009 at 8:43am
aww hun be brave i was a nut i keep wanting to run away with my baby yelling leave him alone theres nothing wrong with him lol big hugs i still have tears for him now it relly can be hreat brecking ------------- <a href="http://lilypie.com"><img src="http://b4.lilypie.com/nLJ5p13.png" alt="Lilypie 4th Birthday Ticker" border="0" /></a> |
Posted By: emmaohara
Date Posted: 11 May 2009 at 9:03am
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Well I rang and oh course the lady is away today arrrrr!!!!! left my number so hopefully she will ring me back tomorrow and we'll go from there.. just when I got the guts to do it..typical aye! ------------- http://lilypie.com">
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Posted By: james
Date Posted: 11 May 2009 at 9:49am
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aww hun keep pushing maybe go thur your docs mine were no help at they said that james was fine big hugs ------------- <a href="http://lilypie.com"><img src="http://b4.lilypie.com/nLJ5p13.png" alt="Lilypie 4th Birthday Ticker" border="0" /></a> |
Posted By: Aquarius
Date Posted: 11 May 2009 at 8:26pm
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oh emmaohara...good on ya girl....
just a little set back dont let it put you off, you will get plenty of those.... good luck too by the way and dont forget the spectrum is sooooo vast he may just be perching on the high end of it ( could be aspergers actually??) Aspergers is a high functioning type of autism where alot of sufferers live relatively normal lives and have enough logical function to realise that they are different and take appropriate measures to safe guard themselves...so to speak.... ------------- http://www.magicalkingdoms.com/timers/">
mum to mr 16 & mr 10 |
Posted By: kell
Date Posted: 12 May 2009 at 2:51pm
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Im going to sneak myself in here.........
James is nearly 2 and we have known from the day he came home something was not right, he has what we call quirkey behavours. I went to the doctor about them all a month ago, he referred us to a pead, who without meeting us referred us to early intervention, they have met with James x1 and have decided to put him in day care for a few hours a week with an aid to build up a report then we meet with the pead after one month........ In the mean time we are still living with violent meltdowns all day, night terrors, and a boy who wont speak......... this is all such a long process.........does it sound right to the people who have been here???? Im most terrified of them saying nothing is wrong with him, our family is falling apart at the seams. Big hugs to everyone in this boat xxx ------------- Kayla Rose is now 4! James Sydney is nearly 2! |
Posted By: Aquarius
Date Posted: 13 May 2009 at 1:22pm
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hey kell...
yeah sorry to say it sounds right.... Enson is 8 now and honestly the process has been looooong...he has had great help outside the home but with all honesty it has been us as a family that makes it work. i left work hwen he was 3 and still havent returned!!!so its a strain on finances that no disability allowance or respite can come close to covering ( but they do help) you by now must be noticing things that set him off??my advise would be to monitor his habits learn what he likes/dislikes and create an enviroment that caters to him...i know it sounds difficult and alot of people would say to us...he has got to learn to put up with stuff etc...but i disagree!! he will have to learn alot absolutely but the things that happen outside the home/at play group-centre/school/kindy etc.. are enough to challenge him...so wecreate a retreat for him at home. and yes this may include him and us doing some crazy things..lol but who cares..it keeps the peace bottom line......choose your battles!! ------------- http://www.magicalkingdoms.com/timers/">
mum to mr 16 & mr 10 |
Posted By: kell
Date Posted: 13 May 2009 at 3:19pm
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Thanks for the reply, we do know alot of the things that set him off, but some of them are honestly unavoidable, he doesnt like to be touched or picked up alot of the time, and that is something I have to do.
He also likes to play on his own, this is hard to explain to a 4 year old sibling when they are only trying to interact, if James is having a good day he will want to play (somewhat) with his sister but she is terrified "do I play with him and risk being the center of one of his melt downs" or "do I ignore him and he gets angry at me" Im a huge advocate for picking battles and I have done this for both my children, Kayla seems to play up on it though because James gets away with far more than she does, then I feel bad
How do the rest of you get around this issues?? Do you have anymore advice?? Thank you so much in advance ------------- Kayla Rose is now 4! James Sydney is nearly 2! |
Posted By: emmaohara
Date Posted: 13 May 2009 at 6:06pm
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Big hugs Kell, sorry I have no advice I've been in denial for the past few months so I'm no help!!
Finally a break through, got a call tonight and ben is being referred to the hospital for a proper assesment hopefully in a week or two, so scared although I don't know why, this is a good thing..hopefully they will help us help him...ekkk my hearts all over the place..kids aye who said they would be so tough on our hearts, good job they are so cute!
Right need a wine! ------------- http://lilypie.com">
http://lilypie.com">
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Posted By: kell
Date Posted: 13 May 2009 at 6:15pm
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Thats good news emmaohara! Know what you mean about feeling scared though xx
I will be interested to see what they say to you and what your next steps will be, make sure you keep me posted ------------- Kayla Rose is now 4! James Sydney is nearly 2! |
Posted By: kiwigal
Date Posted: 13 May 2009 at 10:51pm
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There is some traits to autism but they are very minor but as soon as he starts doing something we tell him to stop immediately before it becomes a hard habit to break. If I tell him go and give so so a cuddle he will go right up to them and give them a hug. He interacts with his little sister who is 8 months old by going up to her and start making lots of noises then they both crack up laughing it is so sweet seeing them interacting. He had his IEP meeting a couple of weeks ago and Dh came home and said they think that he has got a photographic memory he will go up to someone in class that has written something and will go back and write it word for word. Aquarius do you get the disability allowance as we get about $81 not a lot but at least it is something. We are going to try Jacob on these http://www.carn-aware.com - www.carn-aware.com
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Posted By: Aquarius
Date Posted: 14 May 2009 at 8:28am
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yes we disability allowance for him ($80 also must be the norm)which i agree aint much but if any of you out there are applying for it and have special circumstances such as.....still in nappies/wets bed/dietry needs/medication etc you can get more, you just need to supply some proof.
gee Kell sounds like your going through alot of what we do...yes i agree alot of it is unavoidable which makes it so hard aye. we take things one day at a time...great days and shockers where i just wanna go to bed and cry!! ( which i have many times) i know around 80% of relationships breakdown when dealing with these issues and i'm thinking that we all have our guys around which is great!! sorry if i got that wrong for anyone...do tell if you are on your own and how you cope~~ Siblings do cop ALOT dont they!!! i am lucky to have a 14yr old boy as well who is over 6 feet and quite strong!!! so thats fantastic when we out and Enson decides he's had enough....mr 14 can easily scoop him up (enson a bit of a pipsqueak) and take him straight to the car...thats our emergency plan!! whereever we go...lol...but yes we find he has to endure some slight unfairness on our behave just to keep the peace, so we make sure we make up for it in other ways..thankfully hes old enough to understand. we decided not to have any more kids as we felt it unfair to the boys to devide our time and energy even more....and what happened recently???thats right we are now due for num 3 in aug (hence the massive gap) big shock for us...and with all honesty we had a decision to make and any earlier we wouldnt have been able to cope, but the timing seems ironically right and enson is so keen to know all about the baby, helping with everything thats being organised. its great to teach him and thankfully he loves babies of all kinds... ------------- http://www.magicalkingdoms.com/timers/">
mum to mr 16 & mr 10 |
Posted By: emmaohara
Date Posted: 20 May 2009 at 7:02am
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Still waiting for the call back.....hmm let me guess this is going to be a long slow process..been a week since the referral..... ------------- http://lilypie.com">
http://lilypie.com">
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Posted By: Rovic
Date Posted: 21 May 2009 at 9:36pm
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Thank you all for sharing your stories. I don't have any kids yet, but I have 2 georgous nephews. The oldest nephew (nearly 3) is so very smart and so curious about the way things work. He does have eye contact and has lots of cuddles too. He counts very well and has lots of words. He is incredibly fussy with food and doesn't tend to play with other kids or his wee brother too much. He sounds like he has a lot of things in common with your kids. I work in the disability sector and have suspected for a wee while that he is on the ASD spectrum, as has my mum and a few other family members. However, how do we mention this to my sister? She has never indicated that she thinks there is anything wrong. How do I bring this up with her? I have been thinking I need to do this for a while, but he is going to kindy soon so getting an assessment as soon as possible would be beneficial. Help!!!! |
Posted By: emmaohara
Date Posted: 23 May 2009 at 6:25am
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Hi Rovic..its so hard as it such a sticky subject..if someone had suggested ben was on the spectrum a few months ago I would have be horrified..i guess its something you have to realise yourself and once the penny drops and you accept that its not a huge thing..your kid is still the same one you loved last month..hes just a little more special!
Well we finally got a call back we are seeing the CAMS team at the hospital in a week and a bit..so the ball should start rolling from then...nervous but the lady sounded lovely on the phone, so we'll see how ben does ------------- http://lilypie.com">
http://lilypie.com">
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Posted By: Aquarius
Date Posted: 04 June 2009 at 6:05pm
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hi all...havent checked on here for a while...
oh good luck emmaohara, please let us know how things progress Rovic..arent you great!! yeah it is a tricky one and i would have to agree with emmaohara as some need to clink onto it themselves. i only say that as we had a similar experience with my cousin. their boy is obviously on the spectrum but do you think we can tell them...no way they got real offended(sad but true) once he starts socializing with other kids any problems that are gonna arise will then...if they all coping with no probs let them be, but if things start to go abit pear shaped then you may have more of an oppourtunity to bring the topic up... good luck.. ------------- http://www.magicalkingdoms.com/timers/">
mum to mr 16 & mr 10 |
Posted By: emmaohara
Date Posted: 06 June 2009 at 7:24am
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Good advice aquarius!
We went to our first assessment last week and they said he is definately on the aspergers spectrum. We are now in their care and are going back to see the psychiatrist in a month or so ( she said it was a very slow process here in gisborne...) to get him 'labelled' as she put it...she said that was not a bad thing as we will get all the support we need once he has a 'label' as such Anyway the CAMS team rang yesterday and we have to fill in heaps more forms and questionnaires that they forgot to give us before we can proceed...hmmm..we'll get there...eventualy! So all positive right now just looking forward to getting him seen by the behavourial team and some coping strategies sorted out. How did other kids find the psychiatrist assessment? I can't see how they will make him interact with her/him..should be interesting!! Any ideas as to what they actually do? Thanks for listening ladies ------------- http://lilypie.com">
http://lilypie.com">
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Posted By: Aquarius
Date Posted: 06 June 2009 at 9:24pm
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i know what you mean about the tests!!!
i remember we were worried when enson had an appt at the audiologists to test his hearing ( dont worry if your child isnt, we just thought it might have been his hearing that was the issue at first) it wasnt so much his ability to do the testing it was more the explaining to him about what he had to do!!! but i tell you what, they had it sorted, and he passed all tests with flying colours...( no surprise really as i knew he could hear and that the problem was much more deeper than that) bottom line is...the professionals usally have an idea as to what they could be dealing with. and we have always thought...geez, enson never gonna cooperate with any form of testing, but that really explains why we are doing it in the first place.. ------------- http://www.magicalkingdoms.com/timers/">
mum to mr 16 & mr 10 |
Posted By: mum2rileyandco
Date Posted: 20 June 2009 at 9:44am
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Hi there,
Its great to hear you have an early diagnosis. As heart breaking as it is, they say early intervention makes a huge difference. My DS1 (8) was diagnosed with ASD and ADD in grade 1. He has a very mild case, he has completed and dosnt have all aspects of the condition. A great quote i read recently was "If you have met one person with Autism then you have met one person with autism. The condition is so incredibly varying. Cam is now in grade3 and it has come out now that he is suffering from anxiety and he is highly strung emotionally. He is starting a new medication to help that plus a program developed by prof Tony Attwood that uses cognitive therapy to help with his emotions. I believe getting this under control will make a huge difference to Cam. Best of luck, these kids sure are a gift, although sometimes it is easy to forget
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Posted By: Rovic
Date Posted: 29 June 2009 at 9:22pm
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Hi there. Thanks for your advice. My sister was up visiting in the weekend with her DH and 2 boys. Luckily the weather was crap and I had a chance to float a few ideas with her before coming out and saying anything. She has had a few thoughts recently so was really good timing. I have done a bit of research and could share some info with her and even had 2 dvd's here that we could watch if the chance came up. It had to have been one of the hardest things I have done and even now am getting a bit teary thinking about it (am just a big wuss really). Luckily over the weekend we had a few chances to chat about it and she went home with a list of behaviours and a plan of what to do tomorrow. Am so glad we had the chance to do this and I hope that things start to make a bit more sense for them soon. Thanks for all your support and advice. I will come asking again if that's ok ------------- http://alterna-tickers.com"> 
http://lilypie.com"> 
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Posted By: Rovic
Date Posted: 02 July 2009 at 8:08pm
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I meant to say the 2 dvd's I got were called "In my shoes" and "Autism at school". The first should be available at a local disability resosurce centre and the other I borrowed from Altogether Autism. Haven't seen them both fully, but from what I have seen, they looked quite useful. If anyone else knows of some good resources I'd be really interested in checking them out. BTW, my sister has an appt with a private paeditrician on Monday next week. She contacted lots of people after talking with me in the weekend and the plunket nurse referred her to the DHB, a private paed and also to an SLT. ------------- http://alterna-tickers.com">
http://lilypie.com">
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Posted By: emmaohara
Date Posted: 11 July 2009 at 2:16pm
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Wooohooooo going back to the beginning of this thread...we are finally seeing the psychologist on Monday at the hospital..will report back as to whether we got a diagnosis or not
Really just hope we get some help...Ben is having some terrible days ( and some awesome days to be fair) but the terrible ones are TERRIBLE!! Not eating much at all, major tantrums if something does not go as he thinks it should worse is the confusion and crying if he just doesn't get something in a social context ( that breaks my heart) lots of headbanging...roll on Monday..wish us luck! ------------- http://lilypie.com">
http://lilypie.com">
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Posted By: Kellz
Date Posted: 12 July 2009 at 8:19pm
| Good luck for your appt tomorrow. Hope it goes well and you get some answers and help. Thinking of you guys. |
Posted By: james
Date Posted: 13 July 2009 at 11:09am
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yep big good luck here to all fingers and toes crossed you get some answers ------------- <a href="http://lilypie.com"><img src="http://b4.lilypie.com/nLJ5p13.png" alt="Lilypie 4th Birthday Ticker" border="0" /></a> |
Posted By: susieq
Date Posted: 13 July 2009 at 3:36pm
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How did it go for you today hope it went well ------------- susie |
Posted By: emmaohara
Date Posted: 14 July 2009 at 7:17am
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Thanks guys ( and kellz how did you suddenly get 14 weeks pregnant thought you were about 8...ekkk..arrr the year is going too fast!!! )
Appointment was a bit weird...we were in this little room with like 2 toys and I guess they expected ben to sit on this chair for an hour while we talked about him..well he sat and played for 10 minutes then he went and explored the room which didn't go down too well and sit on her chair and stuff.. Hmm at one point he went over and jumped on these scales and then sat on her chair one of those which goes round and round , so he played with that for 2 minutes then tried to leave and then went back to playing with this toy. Anyway the point of this..! is the psychiologist said that his jumping on the scales was a sign on flapping and he took comfort from the twirling of the chair...she looked very very deeply into things which i thought were quite normal for a 3 year old.... BUT all in all was fine we repeated what we had to said to the nurse about his eating, head banging and sensory issues and she gave him a diagnosis of autism which we expected. We all sat there going hmmm what next she was quiet we were like ok so now tell us what to do...anyway she said we have to see a dietician and another psychologist ( can't remember their title nuro something) at the hospital but with no time frame at all anyway i rang autism nz and they are sending me a pack and i emailed the gisborne group so we'll see what happens next really just want to know how to help him, seemed at the hospital it was like yes this is what he has but then that was that..hmm What did you guys out there do after your diagnosis?? was there much a delay in getting help? at least we have the diagnosis i guess thats the first step! jeez i needed a wine after that day yesterday hee! ------------- http://lilypie.com">
http://lilypie.com">
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Posted By: james
Date Posted: 14 July 2009 at 8:19am
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ok here in dunedin we have the vera haywood center which has speech and ocupatoinal therepys james goes there once a week for either speech and ocupatoinal therepy i,m so glad you have got your dignosies big hugs hun sometimes you have to push toget help for your wee boy ------------- <a href="http://lilypie.com"><img src="http://b4.lilypie.com/nLJ5p13.png" alt="Lilypie 4th Birthday Ticker" border="0" /></a> |
Posted By: susieq
Date Posted: 14 July 2009 at 11:02am
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I am glad you got your diagnosis too,
hope things go well from here on in ------------- susie |
Posted By: emmaohara
Date Posted: 15 July 2009 at 7:54am
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Thanks susieq
James - What exactly is occupational therapy? I'm going to leave it a week and then will ring back CAMS and ask what there action plan is for ben..is that too soon?? i know i'm impatient but i just want some help to know how to help him He had a terrible fit yesterday wacking his head and i just didn't know what to do...just want some advice really Went to autism centre here in gisborne its only open once a month at 2pm and that was last week so i missed it for the month aaaaaaaaaaaarrrrrrrrrrrrrrrrrrrrrr!! big sigh...!  ------------- http://lilypie.com">
http://lilypie.com">
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Posted By: james
Date Posted: 15 July 2009 at 9:18am
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pretty much play with kids they play with them working on co-ordanation fine and gross moter skills ect ect james as one sisson a week he loves being there but hates the walk there lol. Hang in there hun its horrable when you feel like theres nothing you can do i would ring stright away it can be a long wait to get help and sometimes they need a little push ------------- <a href="http://lilypie.com"><img src="http://b4.lilypie.com/nLJ5p13.png" alt="Lilypie 4th Birthday Ticker" border="0" /></a> |
Posted By: susieq
Date Posted: 17 July 2009 at 4:16pm
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Hi Emma,
was reading our local NZ CCS billboard magazine this morning and they have a resources page on the last page of the magazine One of the resources they have is a book callled Playing, Laughing and Learning with Children on the Autism Spectrum by Julia Moor, Parents of young children newly diagnosed as on the autism spectrum are often at a loss forn ideas about how best to help their child. This book is not just a collection of play ides, it shows how to break down activities into manageable stages and looks at ways to gain a childs attention and motivation and to build on small achievements. Each chapter covers a collection of ideas around a theme including music, art, physical activities, playing outdoors, puzzles, turn-taking and using existing toys to create play sequences. Ph 0800 227 200 or email info@ccsdisability.org.nz ------------- susie |
Posted By: emmaohara
Date Posted: 17 July 2009 at 7:43pm
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Thanks susie will email them now x ------------- http://lilypie.com">
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Posted By: Mewok
Date Posted: 20 July 2009 at 12:38am
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Hi All, this is actually the first time I have posted in here! This thread caught my eye though.
I am Aspergers myself, 25 years old and have a little baby girl who is almost 9 months. I was diagnosed when I was 12 years old, after years of my parents knowing something wasn't quite right, but not enough information around at that time when I was a young girl. If I can help in any way, let me know. :) |
Posted By: babyg
Date Posted: 02 August 2009 at 10:15pm
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What a great new thread!
Hi to everyone with *extra* special kids (cos all kids are special ). Best wishes to anyone waiting on diagnosies for their children.
My sister has two sons and a daughter. Her eldest (DS) was very 'normal' in everyway from birth. Her daughter was very 'difficult' from the very moment she emerged from the womb. Much more difficult than any stubborn child. The only emotion she showed was anger, no eye contact, communication or social interaction, would go on hunger strikes at will and slept no more than a couple of hours each and every night from birth. She was big on self destruction, particularly headbanging and throwing herself at walls and doors. She was assessed over an 18mth period and was finally *diagnosed* at 3.5yrs as a 'difficult, strong-willed' but completely 'normal' individual. She is now nearing 5 and has come out of her shell and is exactly as the doctors finally labelled her 
My youngest nephew (now 3.5yrs) however, has just been diagnosed as autistic after just a few months of investigation. We are still waiting to hear where he sits on the spectrum. He has a vocab of half a dozen words at max, no eye contact, no physical or emotional interaction and is almost totally 'absent' to everyone and everything. He eats and sleeps like a dream and doesn't show any anger or self-harm at all (so very different from his sister's 'symptoms'). He is the sweetest little boy but is entirely in his own world. I'm sure I'll be popping in from time to time to ask questions, let out my worries and fears and generally learn how to be a good aunt to my special wee guy. Thanks for listening to my babble  ------------- Ev, Mum to: Carys Ruby - 4 October 2007 Spencer James - 2 July 2010 |
Posted By: ?Lolly?
Date Posted: 22 August 2009 at 10:09am
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I just saw this thread and thought I would stop by and say hi.
Both my Mother and Brother have Aspergers Syndrome. They are even more special and unique because of it and who wants to be 'normal' anyway? I think its important to know if you child is displaying Autistic traits from as young as possible because there are therapies that you can do to help them adjust living in a world that doesn't understand. I'm pretty tired right now, there is so much more I could add! But its nap time for this pregnant mumma :D ------------- Captain Chaos (5) & the Trouble Monsters (2!) 
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Posted By: Surreal3
Date Posted: 24 August 2009 at 8:31pm
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I came by this thread looking at Dyspraxia. Having read through all the posts its nice to know that as parents of our beautiful children with special needs we are not alone. Im a mum to four children the youngest who is 8 months old. I found out very late that I was pregnant as DH had a vasectomy. It was quite a shock when we discovered we were expecting number 4 but also there was a huge worry as I had consumed quite a nice amount of alcohol during the first 5 months. As someone who never had regular monthly cycles we didnt think anything till i started to grow! When my little boy was a few months old i started to notice he was different than my three other children. I could never get him into a proper sleep pattern, his attention span is 10 minutes, reacts to noise and change.l At 4 months he displayed unusual limb positions with his arms (hyperextension) and wasnt on track with rolling, laughing baby babble etc. We finally saw a Paed a month ago. Baby has low muscle tone, gross motor delays, hyperextension, increased tensor tone (not sure what that is). We have neuro therapist coming in a few days as he doesnt sit up at all and has a head tilt. Paed said that he cannot say if alcohol has had an effect but suspects that it has (he has one mild facial feature consistent with alcohol effect). Aside from constant worry and guilt i feel so alone and would love to talk with other Mums of children with any special needs as i understand the feelings of helplessness and frustration are possibly the same. Im a 38 year old Mum who works fulltime (dad stays at home). Unfortunately Dad has his blinkers on and thinks everything is fine) but its not. I do know that my son is beautiful and is my world. would love to chat with other Mums especially about autism as Paed says that alcohol effects can mimic autism. Sorry feeling very lost
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Posted By: james
Date Posted: 25 August 2009 at 6:44am
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hi Surreal3 my wee boy has dyspraxia just sending you big hugs and that your not alone ------------- <a href="http://lilypie.com"><img src="http://b4.lilypie.com/nLJ5p13.png" alt="Lilypie 4th Birthday Ticker" border="0" /></a> |
Posted By: Surreal3
Date Posted: 25 August 2009 at 7:54am
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Hi there
Thanks needed them very much
How old is your little boy? Can you tell me about dyspraxia, did your little one have any signs as a baby? |
Posted By: emmaohara
Date Posted: 25 August 2009 at 2:09pm
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Hi Surreal3 and welcome!
You are definately not alone and I truely understand what a difficult time this is for you and your family. My hubbie also wears his 'blinkers' and i'm sure thinks our son will just wake up one day and be a normal kid. well so do I but I'm a bit more realistic!! I understand your feelings of guilt I too feel like it is in someway my 'fault' and that I was a bad mother not noticing it earlier ad thinking he was just unique ahem.!! but feeling that way is just a viscous cycle and laying blame does not cure anything or make our bubbas get better. Is there any support groups in your area for kids with special needs? I live in Gisborne, and when we found out a couple of months ago our son was autisitic, I rang around and there was nothing, which has lead me to start up a group as there are so many lonely parents out there who need to vent and support . Don't suppose you are in Gisborne!? I don't get on here very often now but will pm you my details. It is a long rocky road and i've only taken the first few steps but if you need any support or help i'm here ------------- http://lilypie.com">
http://lilypie.com">
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Posted By: Surreal3
Date Posted: 25 August 2009 at 5:41pm
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Hi Emma
Thankyou so much for talking. I got your message in the inbox but couldnt reply as i was at work I havent quite worked out how to get back in Once I do will email.Ive seen your earlier posts and it looks like you have had a tough road. Im here to support you and others as well. I havent had a chance to even look at a support group Im in Auckland as Im so consumed with guilt its paralyzing. We were on the waiting list to see a Paed through the hospital but it was a 3 month wait so went private instead. Paed said it looks highly likely DS has been affected by alcohol but he isnt prepared to diagnose anything until at least another year. We have a neurotherapist coming tommorrow to help with Connors posture (neurological damage) and developmental delays. Unfortunately any damage to the brain is permanant, it doesnt get better and after reading the long long list of what problems he will probably have has me terrified. But like all children with special needs each one is unique. Paed said that alot of children affected can have autism or autistic like tendencies (communication problems, tantrums etc),adhd,learning and behaviour problems,sensory issues, little or no short term memory blah blah. What sort of challenges do you deal with in your little one? How do you deal with them? So many things to talk about I think no matter what the cause we all feel guilt to some degree? I have to accept that I cannot go backwards and I m no good to my children if I dont pull myself together. This site and the people in here looked like a good place to start. Wish I was in Gisborne!
Hope to chat more soon Michelle |
Posted By: james
Date Posted: 26 August 2009 at 6:29am
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Hi surrell3 james my wee boy is 4 he was dignossed at 2 years of age as a baby he was very quite not alot of babbling and as soon as he started walking fell over alot heaps more then outher kids. James dyspraxia effects his speech and moter both fine and gross moter skills. He has come such A LONG way at 2 he had 20-40 words and was soo fustrated and keep falling over now at 4 he would have around 200 words and can run, jump ,hop .
I tottaly understand your guilt you are feeling as i have dyspraxia and have handed to my son it feels arwfull kowing it is your fault although its quite possable that any furture childern could not have it big hugs hun ------------- <a href="http://lilypie.com"><img src="http://b4.lilypie.com/nLJ5p13.png" alt="Lilypie 4th Birthday Ticker" border="0" /></a> |
Posted By: Surreal3
Date Posted: 26 August 2009 at 9:25am
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Hiya
Nice to see you again
Yes the guilt is awful. We have neuro development therapist coming later for 1st visit not sure what they will do. Connor's balance, co-ordination and posture is all screwed up. He did manage to sit up for 15 minutes on the weekend though. Did James have OT or anything like that to help early on? |
Posted By: james
Date Posted: 27 August 2009 at 6:40am
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Hi again yep James has ot once a week and speech once month. Trust my i have brust into tears over this soo many times its all quite normal i have been told. how old is Connor ------------- <a href="http://lilypie.com"><img src="http://b4.lilypie.com/nLJ5p13.png" alt="Lilypie 4th Birthday Ticker" border="0" /></a> |
Posted By: Surreal3
Date Posted: 27 August 2009 at 8:37am
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Hiya
Well the neuro therapist came gave us some exercises the family therapist said you were worried about the alcohol i said yes she said its only a matter of time probably within the next year and it will show with other development problems,behaviour, learning etc. Its too soon to tell what sort of damage has been done. They gave us some "play" exercises as well so hopefully that will help. Connor is 8 and a half months. What does your OT do with James? Yes I understand the feelings and I dont think they ever go away hopefully will become more manageable with time
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Posted By: Aquarius
Date Posted: 05 September 2009 at 9:28pm
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hey all..just checking to see everyones process and just to say hi...
------------- http://www.magicalkingdoms.com/timers/">
mum to mr 16 & mr 10 |
Posted By: kiwi2
Date Posted: 09 September 2009 at 1:35pm
Just thought I would post my experiences as this person really brought back the first two years of my daughters life. My third daughter was a terrible feeder, sleeper, night terrors and a lack of verbal skills and terrible tantrums. Normally I ended up in bruises and she used to head bang anything whether it was a table or a floor or me. She beat her head until she had bruises and once even a concussion. I took her to the drs a lot and suggested she had autism. They told me no as she made eye contact. Finally I got an appointment to have her assessed by the early intevention program (I live in the states) however in the meantime I decided to try my last card and get her hearing tested. This was the our saviour. The ENT described her behaviour to me just by looking at her throat and said it was her tonsils. She had sleep apnea due to the fact that her tonsils were so large and once we had her surgery we had a different child. Overnight. She had tonsils and adenoids out with grommets. We were the lucky ones. A day doesn't go by that I don't count our blessings. Our family was falling apart due to the stress of having a difficult child. By posting this maybe it will help someone coming in here looking for answers. For those of you who have autistic children I think you are fantastic. For two years we struggled to keep it together. I will forever have a special admiration for anyone with a special needs child no matter how high functioning. One thing I did learn was that in the states they beleive that the earlier the better when it comes to therapy etc. So if you think that there is a chance of autism go for it and book the appt. |
Posted By: Surreal3
Date Posted: 11 September 2009 at 7:58am
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Hiya Em - good luck for visit to Auckland Doctor! Let me know how you get on
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Posted By: babyg
Date Posted: 13 September 2009 at 12:31am
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Hey everyone, you all rock!
Surreal - what a very hard thing to go through when you were never expecting to have anymore bubbies. Connor will be a very special person in your life I'm sure 
I just spent a week with my sister and her three kidlets in Melbourne and some interesting things came out while I was there. Her nearly 4yr old autistic boy is clearly very autistic (but we knew that)! The paeds have now said that her nearly 5yr old daughter will be diagnosed with aspergers too
Hard thing for my sis to hear as she is only just coming to terms with master 3s diagnosis. Miss 4 is very high functioning (which is probably why they decided she was fine in the past) but she still has lots of difficulty playing with other children and completely shuts down (goes silent and stiff) in loads of situations (like on a daily basis). They are going to wait to fully assess her when she starts school next year but have said that her diagnosis is inevitible given that master 3 has autism. Worst part is that they don't qualify for any assistance as they are NZers living in Oz, they can't get citizenship because they didn't get some visa before leaving NZ (which no-one tells you about) So they are struggling to pay for any help they can get slotted in for (which is not a lot as there are so many Oz children who are higher on the lists for it) on one income. My sister can't go out to earn another wage as the two little ones are so much work with their disorders that they need a consistent fulltime carer. It is all really taking such a toll on them ------------- Ev, Mum to: Carys Ruby - 4 October 2007 Spencer James - 2 July 2010 |
Posted By: Surreal3
Date Posted: 14 September 2009 at 9:05am
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Hiya BabyG
Yes it is hard very difficult coming to terms with it all. Thats such a blow for your sister with two littlies with special needs. Is there anyway they can apply for the visa now? Or perhaps they can apply for some sort of exemption from the normal process on compassionate grounds? |
Posted By: babyg
Date Posted: 15 September 2009 at 1:16pm
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They would have to come back to NZ and wait a standdown period before being able to get the visa to go back and her DH would lose his job to do that so it is really impossible
They applied for exemption on compassionate grounds with supporting documentation from their Paed and local Autism supporters and received a letter yesterday to say that the Govt is not prepared to support any exemption to them on any grounds given that they are not and cannot easily become citizens. They are looking into all their options now ie; staying put and trying to do the best they can with the money they have, packing up and moving back to NZ, trying to get some community based funding where they are. Its all going to be quite a struggle to get some support I think ------------- Ev, Mum to: Carys Ruby - 4 October 2007 Spencer James - 2 July 2010 |