Hi Paul and Family I'm an Early Childhood Educator (specialising in sensory disability) based in Melbourne and have become very knowledgable on children who have CHARGE Syndrome, which I must add has occurred more by fate than good planning. I was wondering if you have accessed the American Parent Management Manual (you can download it from their website) or I can send you a hard copy. I'm also a Victorian Director of the Australian Charge Association, you can get my contact details through the austcharge website. If I have one tip to offer you with Raphael it's to start visual communication systems as soon as possible, sign language (AUSLAN), gestures, facial expression, body language, objects, pictures, books, books books, home made ones and commercial ones, while also giving him the best amplification possible through his hearing aids. Hope this is not too intrusive. Also congratulations on the job you are doing with Raphael, it is truly wonderful. I love your blog. Kind regards Rob Last
Both my wife and I have read through the medical part of the manual thoroughly and I am about half way through the developmental section.
Thankyou for the tip about communication. Indeed that is why we are trying to learn Auslan and of course using it whenever we think of it when talking to Raphael. Annie dedicate time each day to read to our kids and we try to encourage our kids to read by themselves aswell.
He hasn't got a hearing aid (yet?). He is due to have grommets put in his ears in the near future, I am guessing within the next month, and then they wanted to test his hearing again to see how much it has improved.
Not intrusive at all, I appreciate your comments; I have now added the question of a hearing aid to our next paediatrician visit.
Raphael has started to sit unassisted, although only for a minute or two.
2 comments:
Hi Paul and Family
I'm an Early Childhood Educator (specialising in sensory disability) based in Melbourne and have become very knowledgable on children who have CHARGE Syndrome, which I must add has occurred more by fate than good planning.
I was wondering if you have accessed the American Parent Management Manual (you can download it from their website) or I can send you a hard copy.
I'm also a Victorian Director of the Australian Charge Association, you can get my contact details through the austcharge website.
If I have one tip to offer you with Raphael it's to start visual communication systems as soon as possible, sign language (AUSLAN), gestures, facial expression, body language, objects, pictures, books, books books, home made ones and commercial ones, while also giving him the best amplification possible through his hearing aids.
Hope this is not too intrusive.
Also congratulations on the job you are doing with Raphael, it is truly wonderful.
I love your blog.
Kind regards
Rob Last
Thanks for taking the time to post here Rob.
Both my wife and I have read through the medical part of the manual thoroughly and I am about half way through the developmental section.
Thankyou for the tip about communication. Indeed that is why we are trying to learn Auslan and of course using it whenever we think of it when talking to Raphael. Annie dedicate time each day to read to our kids and we try to encourage our kids to read by themselves aswell.
He hasn't got a hearing aid (yet?). He is due to have grommets put in his ears in the near future, I am guessing within the next month, and then they wanted to test his hearing again to see how much it has improved.
Not intrusive at all, I appreciate your comments; I have now added the question of a hearing aid to our next paediatrician visit.
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