Thoughts please.... aspergers????

Sarah, it sounds like you're on the right track with looking for answers. Getting help to help your son achieve his full potential early is a key to a good outcome for him.

I've worked as a preschool teacher and have had a couple of kids in my class with their 'quirks' who I'm sure will be diagnosed with some PDD at some point but it's up to the parents. I've had my fair share of parents p***ed off at me for thinking I know their kid better than they do! In one case I actually spoke to the mum more dirrectly about it and she reqally appreciated it as she thinks she had been in denial that her son was anything other than quirky (not saying it's the case in your case). Her son is now getting the extra help he needs and is progressing marvelously. He should lead a really normal life whereas if his quirks had been allowed to continue and had just been accepted it may have been harder to 'change his ways' in the future to help him understand how society works.

She and I are now friends and can talk openly about it but it's hard when you're 'just' parent and teacher.

Good luck with it all!

Our specialists see us together and each of us seperatley eg: mum and dad alone and then DS alone. We find that way we all get our say and there are sometimes things that little ears dont need to hear. Qld no longer has assertainment levels, that system was changed early last year and only means something in the way the school gets extra funding and support, they now have an IEP and a few other completley confusing systems as a way of assesing there level of needs. We are in a public school that has a specialist unit for Aspergers children (yes they exist) we found there was more support at the public school than the private (who only seemed to want the "normal" easy children) Good luck finding a GP that understands. Mine just moved about a half an hour drive away and I'm still going to be driving to see him, it is to hard to find a new one. Does your SIL live nearby ask her who she sees??? How long is the wait at the place you have the referal too?? Hope not to long for you.

Saram, I finally went to the library today. The book I had to return was waaayyyyy overdue:redface:
The book I was thinking of is called The Aspergers Answer Book, the top 300 questions parents ask. By Susan Ashley, phd.
I hope it helps you, and I'm sorry it took me so long to get back to you with the info.

Thanks Netix - I am getting quite a library list :-)

Saram we are getting Matilda assessed through the Mater children's in Brissy & they made me write a letter with the "quirks" I saw in Matilda as well as any other day time carer so her family day care. I wrote mine on Friday & used the list Monnie gave you (thanks for that!). I'm so scared and nervous about putting a label on my girl. There is still a toss up as to whether it is sensory integration alone or high functioning Aspergers but we will see as time goes on. I think our wait with the hospital is 2 months :( so I have a lot of reading to do in the meantime as well.

Ok so yesterday we went to our paed appointment, we had a letter from his teacher (which was a little sad to read about him no mixing with others and some other skills that are immature) and we had the list monnie gave us filled out.

When we got in there she started of by saying she was going to have to run off to a caesar any minute but she was very apologetic. She gave him the once over then had to go so we had to wait for about 30min. By the time she got back DS was starting to get antsy as the other kids in the waiting room had unsettled him a little. She talked to us about a few f the things on the list and then asked us some questions from a checklist made for 2-3yo which was hard to think back as regards to his specific behaviour at that age. She then asked what we thought theproblem might be and we said we thought maybe aspergers or sensory perception blah blah

After listening to us she then told us that this is a psychological problem that she can't diagnoise and gave us a list of 6 different psycholgists???? I said that people we had spoken to (inc teacher) had said we would need to se OT etc and she said she is happy to write out any referrals we would like (OK???) and a brouchure on Autusim and alink to tony attwood site

Needless to say we left there feeling a little disappointed with no answers at all. DS lost the plot in the car and then fell asleep so all in all a great day NOT

Later that night at quilting I ran into a friend who's little boy has just been diagnoised with autism and she has recommend we she another paed who specialise in asd and aspergers. So now DH and I are stuck, do you go to the psychologist - we both think this could be beneficital for him but might be going about it back -to -front. or do we go and see this lovely dr who can give us answers on the day after speaking to us apparently??? which will mean a new referral and another $200. So confused. I am ringing the new practice today to see what they can tell me over the phone

I think if it was me I'd go see the other paed you've been recommended, is that where you are ringing today?
Do you get much back thru medicare (hey the fees might even be different)

Hey Saram

I'd go to the Paed. who specialises in ASD first...

It's really disappointing hearing your experience with the first Paed. Given that she doesn't specialise in ASD, I would probably not take too much notice of her recommendations. She really should have spent much more time with you. Unfortunately it really doesn't sound like she provided you with an adequate assessment...I can certainly understand your disappointment. Unfortuantely, it happens a little too often...

Are you signed up for the Medicare safety net? That should help...Also...if you do need to see a Psych. in the future, there is a new scheme out (Medicarre funded) which your DS may be eligible for. It enables him to access 12 sessions from a Clin. Psych. If you are interested, let me know what your e-mail is, and I'll send you a PDF of the medicare scheme details.

Wishing you all the best.

sarah: I forked out the money for the Psychologist ($480 for the first consult)and had no help other than to fund her new mercedes that she pulled up in when she arrived for the app. See the paed first.You do get a medicare rebate as well for the paed. Then maybe a psychiastrist not a psychologist. We get the psychiatrist covered completely be medicare we have never had to pay out of pocket for it. We just got a referal from the paed (that specialises in ASD) to a psychiatrist that he recommended.

christy: Dont answer if you dont want but who are you on the list to see at the Mater, we are part of the woodwork up there now. Started seeing them about 5 years ago for DS. I can give you a few recommendations if you need. Or a direct phone number. LOL. A personal email address.. GIGGLES

I rang the other paed office today and the first appontment we can get there is on the 15th of September so we are off to get aother referral tomorrow (thankfully got into a supposably good GP which would be nice) so we'll see how we go :-)

Christy - I know what you mean about not wanting to put a label on. It took so much emotionally to get to the first paed half of me wanting them to say it's nothing he'll grow out of it and the other half just wanting them to tell me it's blah and this is how we can help and then to walk out nowhere and to have to get up the nerve to do it all over again grrrr.

Thanks 10longyears - that's what I was worried about too, without a diagnoisis I think we would just be repeating ourselves and going around in circles between paeds and psyc.

Sarham,

I know this is from about a week ago, but I was wondering if you are in Sydney?

If so, I can highly recommend Dr. Antony Underwood. He is a paediatrician based in Pymble who specialises in autism spectrum disorder. We see him with our children for an unrealted reason (he is a homebirth supporter and is happy to see babies born at home for general checkups) but he is a lovely, gentle, and thorough doctor who is world-renowned as an expert in ASD.

Hope this helps...

Michael thats fantastic information to have. ANY paed who is is lovely, gentle and thorough is worthy of seeing.

10longyears... yes please. my email is christy7@bellybelly.com.au We are on the waiting list & just got pushed back to February. But in the meantime we've seen an allergist who through rigorous testing has found Matilda to be allergic to cows milk. She had around 25 viles of blood taken and we've found that she's allergic to cows milk, oats, banana and almonds and has low iron levels and her TSH (thyroid) isn't working properly. We are on a 6 week allergy free diet & some stuff to help her digest food and hoping that this may be the answer to her behaviour as well.

Christy - wow, that is really interesting, I was reading the other day about how food allergies can affect behaviour. How did you go about getting that testing done? How did she go with the blood test? We are concentrating on getting DS on a healthy organic diet just to see how it goes. It is such a battle though as he rarely eats anyway and is extremely fussy about texture. I notice DS is much less able to cope hen tired so I have always given him a multivitamin to help with iron levels

Schmickers - unfortuanately in QLD but that sounds like an amazing paed! One who is really in it for the right reasons!

Sarah, I was lucky enough to go to the food allergy expo and I went to a seminar about food allergies because my DD2 has food allergies from birth. I made an appt with the allergist for Jovie & while I was there he got into Matilda. He was very concerned about Matilda (she looses weight regularly too and we put it down to her being a very fussy eater) and did an enormous amount of tests on her. He knew what tests to run, I just let him do his thing, because as you are probably living it as well, any answer for this is welcomed.

Hi I just thought I would but in I will be really brief..

My son (9) has been diagnosed with aspergus syndrome, it took years of frustration to get the diagnosis. To cut a really long story short when ds was 2 I was at my whits end and somehow got onto food alergy's/aversions and behavour. I trialed a diet through Sue Dengate she wrote the book "Fed up" it took alot of really hard work I have to say and it was by no means easy but I did see a big improvement and discovered alot of foods and other external things that "set him off". One big trigger was milk which he now drinks soy and we stay away from other "triggers". We now get a bit of help through programs at school and help him through life by understanding what his problems are and how his brain works. Sounds strange but educating yourself about this condition is the best way to help your son. I was diagnosed with ADHD as a child wayyyyyy back when they only knew about hyperactivity and most people thought it was made up :lol: so I understand what he's going through and empathyse with him, there's just so much information out there these days so I hope you get the support you need :hug:

Oh also my son was totally obsessed with Thomas he's now moved onto Lego starwars and yep he's just as obsessed with it :rolleyes:

Hi joralyd,

Wow DS is into lego star wars too! Although his major obsession is Shrek 2 at the moment. He is contantly talking about pressing triangle square triangle to do this and square to blah blah balh :-) wel at least it is helping his fine motor skills and hand eye co-ordination :-)

Yes we have Xander on soy most of the time, I've found it is more when it builds up in his system , say if he has milk on his cereal, a milkshake at the shops and then the next day milk again wwe have a bad day but if we keep it at a bare minimum then it's OK - he isn't too fussed on soy so we have to get the flavouring and I wonder if the sugar will cancel out any improvements from the milk. I have been looking into that special cows milk A2 or something but haven't found a supplier up here for it yet.

All the best on your journey!

sarah

I think we were lucky that we got him onto the soy milk when he was only 2 because he now doesn't like the taste of cows milk. DS is the same it's the build up of certain foods that's the problem. Another big problem is the preservative they use in bread it took a long time to work that one out because of the build up factor arg it gets to a point though when you start thinking "is there anything they can have"!!?? I ended up after 18months of stricked diet control slowly introducing different foods and he seems to have built up tollerance to most things although we still have bad weeks atleast he can live like a normal kid. Have you heard of the "door' program? or better still neurothearapy(sp?)/bio feedback? I can vouch for the bio-feedback I used this treatment for axiety/depression I would still be on medication and struggling to cope with life if it wasn't for this.. google it if your interested and if you want to ask any questions about it feel free :hug: good luck with everything