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ASD/Autism Support Group : below school age
Recent diagnosis or suspected ASD welcome


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#1 Therese

Posted 15 March 2012 - 09:24 AM

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Your last thread is Here

#2 sandgropergirl

Posted 15 March 2012 - 10:01 AM

I win

#3 firstatforty

Posted 15 March 2012 - 10:58 AM

Silver for me!

#4 rua

Posted 15 March 2012 - 04:23 PM

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#5 baddmammajamma

Posted 15 March 2012 - 04:25 PM

Chocolate. wink.gif

#6 kh79

Posted 15 March 2012 - 04:33 PM

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#7 baddmammajamma

Posted 15 March 2012 - 04:38 PM

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#8 minimee2b

Posted 15 March 2012 - 04:44 PM

Wine

#9 Mamabug

Posted 15 March 2012 - 04:45 PM

Hello all, a dear friend of mine has a 4.5yo son diagnosed as ASD some time ago. Today she got the official news that her 2.5yo daughter has been assessed as ASD.

Can someone point me in the direction of information so I can better understand ASD - I have listened over the past 18 months, but not all of it makes sense to me and I thought doing some independent reading would help me be a better listener.

Also, she is devestated by today's news and is blaming herself - there must be something wrong with her as this has manifested in both her children. Can anyone advise me on how to help her emotionally at the moment?  We are not geographically close, but we talk at least three times a week. We have been friends for 20 years and I feel so helpless about not even being able to give her a hug.

Thank-you

#10 baddmammajamma

Posted 15 March 2012 - 05:28 PM

Mamabug, what a dear friend you are. I imagine it must be very hard for you not knowing exactly how to best support your friend.

As for reading, I think that "The Australian Autism Handbook" is one of the best resources out there. You can find it at most big bookstores but probably a better place is at your local library or order on line:

http://www.fishpond.com.au/Books/Australia...autism+handbook

There is a very good chapter in it directed toward loves ones of families whose kids have been diagnosed with ASD.

There are also some good "overview" resources on The Raising Children With Autism web site:

http://raisingchildren.net.au/learning_abo...out_autism.html

http://raisingchildren.net.au/articles/aut...tml/context/986

I think the most important thing you can do for her is just be there (even via telephone and email) as a safe harbour where she can share her worries, her fears, and her joys. One of the nicest things a friend said to me was "I don't know exactly what you are going through, but I am here for you in whatever way you need me." And she has been!

Best wishes to your friend. You are a lovely person for being so supportive.

#11 Mamabug

Posted 15 March 2012 - 06:34 PM

Thank you for the links and information BMJ. I will be seeing her this weekend - a rare treat as she will become godmother to my youngest - so will definitely be giving her a hug then.

#12 Marina_D

Posted 15 March 2012 - 08:15 PM

Ladies, i am in a panic.... I know this is an ASD related post but i need to share...

My gorgeous son now 19months was dx with stage 4S Neuroblastoma of the adrenal gland, with metastatis to one lymph and liver at 3.5months. He had surgery at 4.5m and when he was 7m he was cleared of all liver lesions etc.

We commenced 3monthly surveillance - urine tests as well as abdominal ultrasounds. Every testing has come back clear with the exception of this time...one year on. His dopamine levels are elevated - outside the normal range. The oncologist said he needs him to follow a specific diet for 24 hours and needs another sample. If its elevated, we do a CT scan to see whats going on. Oncologist felt it could be a dietary thing but my son doesnt eat anything thats on the "foods to avoid" list which could affect dopamine levels.

I read somewhere online (i know i shouldnt do this but i do...) and i read somewhere elevated dopamine levels could have something to do with ASD, OCD etc.

My mind is going mad at the moment...i know im not being rational - but has anyone heard this??

I pray that this is just a one off and it hasnt come back...i dont know what Id do if it did...God help me.


#13 twistedkites

Posted 15 March 2012 - 08:50 PM

Marina sad.gif I don't know anything about brain chemicals but  I couldn't read this and not send you huge hugs. I just can't even contemplate having to surveil my son for cancer. He must be an incredibly resilient and wonderful little boy and he's got a brilliant Mum. Hope you get answers/ all clear very soon. x

#14 ellie1326

Posted 16 March 2012 - 07:38 AM

OMG huge hugs - hope it's nothing

#15 jdmum1

Posted 16 March 2012 - 08:46 AM

MarinaD - i am so sorry you are so stressed...sometimes google is your worse enemy :/  I have never heard of it but hope you get some answers so u can not panic and worry!

DS got diagnosed with ASD end of January...finally are hoping to having an appointment with the autism advisor in a couple of weeks just waiting for them to confirm a time. Do i take my DS with me to this appointment? or can i go without him? Also what should i expect with meeting with the advisor first time.

Frustrated...ringing centrelink is bad enough but trying to get through to ADHC is IMPOSSIBLE!!! i have been on hold for up to 30mins each time where i have then just had to give in and after 2 weeks trying still have not got through to them its driving me batty!!!!!!

#16 Gumbette

Posted 16 March 2012 - 09:18 AM

Hi Jdmum1

Are you in NSW?  Our autism advisor was through ASPECT and they did my interview over the phone.  There was no need for them to see DD or even me for that matter.  I just needed a quiet room where I could speak to them (for about 45 minutes from memory).

They went through some questions so they could submit my Fahscia funding form, and then went through a range of E.I options.

Good luck.


#17 jdmum1

Posted 16 March 2012 - 09:37 AM

QUOTE (Gumbette @ 16/03/2012, 10:18 AM) <{POST_SNAPBACK}>
Hi Jdmum1

Are you in NSW?  Our autism advisor was through ASPECT and they did my interview over the phone.  There was no need for them to see DD or even me for that matter.  I just needed a quiet room where I could speak to them (for about 45 minutes from memory).

They went through some questions so they could submit my Fahscia funding form, and then went through a range of E.I options.

Good luck.



Gumbette yes i am in NSW ... we were delayed in get DS diagnosis report which delayed sending off the paperwork to the autism advisor through aspect. Then yesterday i missed a call from them, and they emailed me with date for meeting...but the date isn't a good day so i rang back left a message and an email so hoping they call back today if not won't hear from them until Monday. So if i can do it over phone that would be even better.

#18 Marina_D

Posted 16 March 2012 - 12:50 PM

Thanks ladies for your comments and well wishes.  closedeyes.gif

Jdmum - i hope you get some resolution soon. Im still waiting on my report, but Ive contacted the Autism Advisor who sent me out paperwork, so still waiting for the report to submit them. It sounds like youve been through a very frustrating time. I hope it resolves quickly for you now.

#19 Gumbette

Posted 16 March 2012 - 12:55 PM

QUOTE (jdmum1 @ 16/03/2012, 10:37 AM) <{POST_SNAPBACK}>
Gumbette yes i am in NSW ... we were delayed in get DS diagnosis report which delayed sending off the paperwork to the autism advisor through aspect. Then yesterday i missed a call from them, and they emailed me with date for meeting...but the date isn't a good day so i rang back left a message and an email so hoping they call back today if not won't hear from them until Monday. So if i can do it over phone that would be even better.

They will definately do it over the phone.  In my case I'm working full time, and they were only too happy to make an appointment that suited me and I avoided having to take a day off.

Good luck.

#20 item

Posted 16 March 2012 - 06:22 PM

Marina, just saw you post above and thinking of you guys. When should the testing be completed?

#21 ellie1326

Posted 16 March 2012 - 07:46 PM

Marina-how is it going? My thoughts and prayers are with you.

Jdmum-did you get anywhere with the authorities???

Everyone else a huge hi!!!

Anyway I have had very tough few days and tonight I ma just over it.

I will start with - we have the official dx today- Moderate Autism-we have the paper and I rang the Autism Advisor, I have the forms, so we will send it away on Monday and should have something happening in 2 weeks. Well, that is all done so let the circus of EI begin. I am just praying for the wisdom to know what to do for DD, to choose the therapies and therapists wisely so she would get the help that she needs.

But we have had some sad news in the family, which actually makes our sad day even sadder.
My niece, who will be turning 1 next month, was born with only 1 kidney and spine which has not developed properly. Well suspicions are arrising that she might be partially paralised. My heart just breaks for her. And my brothers MIL (yes my brother is the dad of this particular niece I just mentioned) has just been Dx with Breast cancer which has already spread to her liver and lungs.
And today my sister calls, she lives overseas and she had a skiing accident, her bone under her knee is completely snapped, so only skin hold her leg together and her knee is shattered so much that they need to find bones elswhere to try to reconstruct it etc....she is hopefully gonna be lucky enough to keep her leg, but we won't know for sure untill after her surgery tomorrow morning. She is a ski coach as her job, so really bad news.

Just have had  2 days from hell, and now just wann cry. sorry for whinging.



#22 bush lawyer

Posted 17 March 2012 - 12:05 AM

Ellie what a whammy of events to process. I'm sorry you and your family are going through so much right now. I hope you receive a bit of good news over the weekend xx

#23 ellie1326

Posted 17 March 2012 - 11:06 AM

Thank u everyone for thoughts and prayers my sisters surgery went really well and she is awake and talking, so great news thank you again

#24 Marina_D

Posted 19 March 2012 - 10:24 AM

Oh ellie1326 what a turn of events. Im so sorry to hear about all that is happening with you. I know its hard when things go wrong, and especially when they come right after each other. Im happy to hear your sister went well in the surgery, and so sorry to hear about your brothers MIL cancer dx, and your niece.

Now that you have your dx, its a bit of a kick in the guts isnt it? Even though you know about it, to see it become official is always quite sad. Bighugs for you during this time. Try and take some time out for yourself...

#25 jdmum1

Posted 19 March 2012 - 12:18 PM

Oh Ellie...wow what a bad run of events for your family all round sad.gif Really hope that that is it and everything is onwards and upwards.

I am still waiting to hear back from the autism advisor...i rang and left my number and emailed then so hopefully i hear back in next day or so so i can get the ball rolling.

Ellie i still feel like u like trying to work out what is the ebst therapy/EI and covering needs not missing anything vital...its all a bit of a jambles working through things.

DS ended up in hospital last week he threw his drink bottle in a meltdown moment and it crashed back down split his eyebrow open..so 3 stitches needed. We have to go back this week to get them out so not looking forward to that.


Can anyone help me...we are looking at the whole school thing at the moment and just wondering if anyone know how to go about applying for public school unit IO/autismclasses?




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