New to group - Mum with special needs boy in Melbourne Australia...

Melissa - posted on 07/08/2010 ( 5 moms have responded )

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Hi there, I am new to this group, hello to you all, I have been reading some conversations and was inspired to join and share my beautiful boy's story.. he's only 18 months old but has the hugest smile.. we are yet to have a diagnosis for him, but he suffers from global developmental delay, hypotonia, blindness and mild hearing loss. He's the most amazing boy, and melts my heart every day! Looking forward to finding out what's causing it, but just loving watching him grow for now!

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Melissa - posted on 07/13/2010

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Hi Julie, thanks for your reply.. sounds like we are leading parallel lives! The geneticist we see has indicated similar... that we may never find a diagnosis, and that we will just have to do our best for Rhys by dealing with what we do know... easier said than done!! Would just be nice to have something to call it, and have some clues about the future, but will have to wait and see.. Yes, we got hearing aids for Rhys by the time he was 7 months old. I try my best to have them on him every day, but with him still spending so much time lying/playing on the floor they hum a lot, and I can't imagine that being much fun for him!

Thanks for the thoughts too about therapists. We get access to a physio, occupational therapist and speech therapist as part of "early intervention" programs here in Australia, but not as frequently as we would like. So I try my best to give hime some physion every day, but we also have a 3.5 year old daughter so days are very busy sometimes! Plus, Rhys is not a good sleeper so gets very tiring at times... How often do you see your therapists to get results?

And, yes would love to add you as a friend on fb to keep in touch! Thanks!

Julie - posted on 07/11/2010

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Hey Melissa - Welcome! Boy we know what you are going through and about to go through. Luckily there is a huge parent support out there! During my pregnancy they told me that our 4.5 year old daugther had two chromosomes break and transfer but it was a balanced translocation and she would be fine. Wrong! : ) She has all of the things you are saying but she is profoundly bilaterally deaf. She's done great over the years but still about 2 years behind. You are right... they are the most amazing kids and McKenzie was voted best smile in school last year! : ) Something in common. My advise for you is to just keep doing everything therapy you can while you are trying to figure it out. McKenzie is very rare and we never get answers. The genetics dr. even told me "you got what you got" was her best diagnoses! Ghee thanks! We live in Florida. Everywhere is different but find good therapist and go to as many as you can. If you don't like one or don't think progess is going well ~ move on. I stuck with a few to long thinking I was wrong to leave them but I should have left. When I found the right people I saw the difference.

Does he wear a hearing aid? Mckenzie had hers on by 4 months old and has a partial cochlear implant. Her oral motor was so delayed that she still doesn't speak, but again... found the right person and things are coming around!!! Please feel free to connect with me anytime. It's so important to talk to those that are going through it with you!!! Best of luck to you and please - anything we can do to help let us know. You can friend me on fb or just stay here to chat!!!
julie webster
www.specialneedsceomom.com

Becky - posted on 07/10/2010

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That's the best thing you could give your son is all the love you can and then some. My granddaughter is the same way , with always being happy and smiles all the time. Good luck in finding out what his diagnosis. Becky

Michelle - posted on 07/09/2010

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God bless you Melissa. Welcome to the Special Needs group on Circle of Moms

Heather - posted on 07/08/2010

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Welcome! You're gonna love this site. Some very supportive moms with some great ideas. See you around!

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