Alison - posted on 08/17/2010 ( 1 mom has responded )
Just a quick hello and and a little history of myself and my family! I am a mom of 5 kids...myself as well as 4 out of 5 kids have stickler syndrome,two of those kids wear glasses and one has pierre robin sequence(secondary to stickler syndrome) I am very near sighted as well as 2 of the boys...Hayden is moderate and Cooper had severe myopia and is leagally blind in one eye and the other is not far behind. I am lokking for support and a little knowledge on heklping Cooper the best I can regarding school,he is 5 going in to s/k in the fall. He is of normal intelagence but he struggles alot with his work and writing/reading...no dout due to vision loss. I am just wondering how everyone else gets their kids the help they need to do their very best? we are in a small town school and I fear getting resources we need will be hard so I am starting now!! I look foreward to reading some of everyone's story!!