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2 kids with special needs but 1 with so much... Expand / Collapse
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Posted 31/05/2011 5:46:33 PM
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hi i have 2 kids with special needs, my 5 yr old son has autism & developmental delay but he is going fine. just my 4 yr old son he has pddnos, plus cp & global developmental delay & has just be told he also has rumination disorder & nw they wanna put a feeding tube in cause he is nt gaining weight.. just wanted 2 knw if there were any parents out there with the sam problem.. this is my first time having a child with a feeding tube & im just stressing out on how it is going to go & if it works..
Post #57343
Posted 11/06/2011 12:40:24 AM


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Dear mummy26, Hi. My eldest son is 9yrs old, he has Autism, is intellectually impaired and until the age of 7 1/2yrs was totally non-verbal. My youngest son is 6yrs old, has Autism (high functioning like Aspergers), ADD and Global Development Delay. If you scroll down further at this wonderful website to the Forum 'Parents of children with Autism Spectrum Disorder (ASD)' you will find many of us.

Can you talk to your local hospital to find out if there are support groups for parents of children with feeding tubes? Or even your Carers organisation within your State/Territory?

Please keep asking for help.


Mum to DS12yrs, II ASD and DS9yrs, HF.ASD,ADD,GDD.
Post #57855
Posted 13/06/2011 5:16:12 PM
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hi, thanks for the advise, we have just been told that the feeding tube in the nose is nt gonna work he will just keep pulling it out so nw we r on a waiting list 2 get the tube put into the stomach.. we were told that it could take up 2 12months before they can even do it..
he is nearly 5 & he does nt have any verbal words & we were told that he might nt at all talk..
he was getting speach & ot but with his medical problems they told me that they cant do anything till then so it could be yrs before they can even help him..
im gonna find out if there is any support groups around, but i dnt go out much i just like 2 keep 2 myself cause i dnt like the way people look at my son..
my son is such a lovely & caring kid but people just look at him funny so i dnt like taking him places but nw hopefully that he is starting a special school with kids with needs that they can try & get him to talk...
Post #57952
Posted 20/04/2012 10:36:46 AM
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Hi. My daughter had a mic-key button (and ng, and peg) for years. If you have any questions, feel free to ask
Post #67347
Posted 4/03/2014 11:08:15 PM
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Hi all theres a fantastic program that i came across recently. Not many people have heard of it. Its called the "early Development program" for children with a disabilty, delays, special needs. Uniting care wesley port adelaide run it, but its at seaton. Think from memory has to be more than autism diagnosis. Couldnt speak highly enough about the staff team, they have a coordinator, Physiotherapist and are supported by a range of students and professionals. Its specific to your child and has a phsio focus. The staff are awesome and a great support to the whole family. It runs on fridays and only has 8 children during the day. Was like a breath of fresh air stumbling across this program, unofrtunately i cant attend but i did say i would share my experience, the children gain so much from attending and wasnt very costy either...its one of those finds i had to share with other parents..call them or check out www.ucwpa.org.au
Post #74990
Posted 20/03/2014 12:52:22 PM
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Hi, i was having trouble finding therapy for my daughter. She has cerebral palsy. Catholic Care came to my aid. Through them my daughter was able to see a physio, OT and Speech therapist. They also have group sessions as weel where ur child will get time with all three. I was given Catholic Crae's number via ADHAC. Maybe check them out also Learning Links has a good program, but you will ahve to put ur name down on the list.
Post #75075
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