Special Needs

Blind son - ONH

Optic Nerve Hypoplasia

This is our son's diagnosis. We told our pediatrician at his 4 month check-up that he was not meeting our eyes almost at all anymore, and he rarely followed objects the way we expected.

Ten minutes with an opthamologist was enough for the Dr to let us know that his optic nerves were too small, minuscule. Even if his eyes work fine, they simply are not well connected to his brain.

At 19 months now he has three therapists - one for physical movement (he still won't crawl because his hands are his eyes, but he is walking well with his hands held and has several "walkers" to help him get around), another for visual therapy (which for him means learning to scan his surroundings with his hands and find out where specific objects are), and a third who focuses on feeding (because he literally does not understand chewing, so he's still getting puréed foods in a bottle and stage 3 chunky type baby foods, anything mashed and easy to swallow).

We know plenty of people with babies at similar ages, but as much as I know via his therapists that my son is learning well despite the disadvantage, it's still hard for me to see littler babies doing things my son cannot.

There are no charts that accurately reflect a "What to Expect"-type timeline for development in visually impaired children. I'm hoping someone can comment on this feed with personal experience or links to other parenting sites or blogs.

I've just started one to share a lot of the journaling I've done since he was diagnosed. It's barely up yet, but I hope that it will help keep his large family updated, as well as providing us with some helpful contacts who can share their own experiences with us.

From our family to yours, thank you for caring to read our story.


Re: Blind son - ONH

  • I wish I had something to add, or could at least give you a hug. You sound like a wonderful mom and you have a fabulous son. Good luck to you.
  • Are you in touch with a school of the blind in your area? They would have those resources, but you may need to contact them. My DS2 has vision issues. We are doing what we can to save his vision in his one eye, but it feels like a losing battle. He does have one good eye, so he still can see for the most part but it has effected his development. Even though he does not qualify for services with the school of the blind, they still check in on him every 3 - 6 months to  check his progress and make sure that any vision issues he has is being addressed properly in his other therapies (he also has an educational diagnosis of ASD).
    Instead of milestones, you will probably have a list of personal goals to work towards in his therapies. Focus on those goals and don't worry about the milestones.
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  • Another option is looking around the Federation of the Blind website...even search for a ONH Facebook group would be great. Facebook has really changed SN parenting for the better. I am in several groups based on Nate's various dx's and get lots of good info and tips there.
    WAY 2 Cool 4 School

  • My78My78 member
    I'm sure you've come across wonderbaby.org-a wonderful resource on parenting blind children in general-and they sometimes link to other blogs. Napvi has national telesupport groups around different eye conditions, as well as local chapters. Second the suggestion of trying to get in touch with a school for the blind-Helen Keller Services for the blind has been a huge resource for us. The Comission for the blind in your state should also be able to link you to parents or organizations that might help.
  • blackrose-9blackrose-9 member
    edited March 2017

    Ooops didn't realize this was an old post!

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