Duane syndrome
Printed From: OHbaby!
Category: Support
Forum Name: Parenting a child with special needs
Forum Description: A place for those parenting children with special needs to find support and share their thoughts
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44180
Printed Date: 29 April 2024 at 1:29pm
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Topic: Duane syndrome
Posted By: Amesz
Subject: Duane syndrome
Date Posted: 08 July 2014 at 12:51pm
Just wanted to see if there is anyone out there that has or child has Duane Syndrome? My Miss 2 has it in her left eye! I have search around and their doesn't seem to me much support out in New Zealand for this.
I would love to talk to someone who has has it or child has it, I've read a Blog from a 18 year old from the US online and it brought me to tears what she went through during school.
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Replies:
Posted By: JoAbbott221580
Date Posted: 09 April 2017 at 1:27pm
Hi
I have just seen this a couple of years after the posting. We are in NZ. My son who has just turned ten has Duane's type 1. It doesn't seem to have affected his school work or sports much at all and his good eye and brain seem to have compensated/adapted to things. Lighting in classroom and poor curtains was a problem to him with glare and the usual problems of inadequate funding to address this. He does struggle with balance and heights but mostly through communication with the school activities where these things come up (which isn't often) can be avoided/managed. The other areas he finds difficult are things like puzzles and lego where there are lots of small pieces.
In terms of support, he was signed up to BLENNZ (blind and low vision) when he started school. This was on the strength of an ophthamologist report. He has had a BLENNZ worker until recently - a specialist teacher comes and observes and supports. He has been discharged however as the reports have indicated he is coping fine.
I don't know if this made any difference to our son's development but when he younger but we spent quite a bit of time on co-ordination things like throwing and catching balls.
I hope that this is helpful and that things are going well for your daughter. If she is not on the BLENNZ register when she starts school it would be worth pursuing this.
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