Nystagmus

Kathy - posted on 08/10/2015 ( 3 moms have responded )

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My eight year old has congenital nystagmus and I'm struggling to cope with his sudden bad behaviour and he is also dropping behind in school. There's seems to be no support in this area and little understanding from professionals.... Can anybody relate or give suggestions.... Little bit desperate now

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Kathy - posted on 08/12/2015

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Hi thanks for your reply. My son has been signed off by the ophthalmology department at our hospital, he is able to adapt himself and they say there is nothing they can do as he is already helping himself. He had regular visits from sensory needs when he was in infants school and now he has been at junior school for one year he has had only one visit. I have been in to see the senco to discuss his school report and following this I have insisted on a support plan and further meeting with senco and sensory team together. It seems in the south of England there us very little support and sadly no understanding of this condition. I know his behaviour is frustration and knowing he is falling behind it seems down to me as the parent to keep putting pressure on professionals to do their jobs. So sad and stressful for my son and myself. My son has congenital idiopathic nystagmus.

♫ Shawnn ♪♫♫ - posted on 08/11/2015

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Considering that this is a condition that affects his eyesight, what has his optometrist said, or recommended? Is he in a program for assistance at school?

He needs to be in an individualized education plan (IEP) that addresses his disability and how to help him with it. I would ask your physician and optometrist for their recommendations for a specialist as well.

Sarah - posted on 08/10/2015

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When was your child diagnosed? Congenital nystagmus is present from infancy. How has it affected his vision? Does he have any special arrangements within his school to help aide his learning. Frustration with his vision may be the root of his behavior issues. If you can share more info, I can try to give you better advice.

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