Found out our baby is blind.

DFZ21 · February 2012

We just found out that our 4 month old has no vision. I'm devestated. My dad thinks its not true. I don't know how to get him on board. I wish it wasnt true, but it is. Now to process the info and try to find the light at the end of this dark tunnel.

Anlo · February 2012

(((((HUGS)))))

Soapstone · February 2012

Big hugs to you. I'm sure that was very difficult news to receive. Make sure to check out wonderbaby.org. They have some good resources available.

His(1&only)wife · February 2012

((hugs))

MummyGruetzie · February 2012

We had a pretty strong hunch before DD got her diagnosis that she couldn't see, but it was still really hard to get the confirmation and know for sure. DD is legally blind. When she first came home, she had NO functional vision and the doctors didn't thought she might be completely blind. However, her eyes are definitely stronger now and she does have some functional vision.

I agree with PP that wonderbaby is a great resource as is Perkins. They have some fabulous webcasts. If your doctor didn't direct you, you may also want to contact your pediatrician about vision therapy through your local early intervention program. There's a ton of stuff your vision teacher will be able to put in place to help you/your daughter, regardless of specific prognosis. And, of course, we're here when you need us.

realisticdreams · February 2012

Welcome (and sorry you have to be here)

My friends older sister has a son who is blind, I believe they found out between 4-6 months of age about it.

I don't know if she still hangs out here anymore but I can certainly try to contact her on FB and let her know about you, if you would like.

As for getting parents on board, that seems to be the normal here, sometimes they NEVER get on board, obviously you will have some type of proof. I think it's part of the grieving process.

Hugs.

changingnames · February 2012

Hugs. Hopefully your dad will realize that he isn't helping you and is actually making things tougher on you bc of his denial. That is how I felt when my parents were in denial over ds's asd. We as a board can offer unlimited hugs and listening ears whenever you want them and hope and prayers that you get the services needed to maximize all of your baby's wonderful gifts and minimize any difficulties. That's how we look at our overall plan for asd in ds's life and I think it can to some extent be generalized to most disabilities. I saw a tv program when a blind woman became an incredible business woman in the perfume industry because her sense of smell was so tremendous and her ability to know what kind of person wore a certain scent. I'm so sorry you ae going thru this. Hugs.

DFZ21 · February 2012

Thank you so much ladies. I was nervous posting because I didn't know if any one here experienced their child being blind. It all still hurts and is very overwhelming. Thank you for the site recommendations I will certainly check them out. DD is very high needs and is usually crying unless being held, talked to, or touched. We have 3 other kids so it's hard. She also doesn't sleep well. We have OT, PT, and a vision specialist coming out starting next week. I just feel alone because I don't know any one else that has experience with being blind or raising a child who is blind.

Thanks again for your kindness.

realisticdreams · February 2012

DFZ21:
Thank you so much ladies. I was nervous posting because I didn't know if any one here experienced their child being blind. It all still hurts and is very overwhelming. Thank you for the site recommendations I will certainly check them out. DD is very high needs and is usually crying unless being held, talked to, or touched. We have 3 other kids so it's hard. She also doesn't sleep well. We have OT, PT, and a vision specialist coming out starting next week. I just feel alone because I don't know any one else that has experience with being blind or raising a child who is blind.

Thanks again for your kindness.

I'm gong to send you a PM!

MummyGruetzie · February 2012

Blech. The trouble mixing up days and nights is hard in any young baby and then you throw in there not being able to see the difference and it does make it hard! DD has a tiny bit of vision and can perceive light, but its very painful so we mostly keep our house dark during the day.

With a good schedule, DD can get into the routine and sleep well at night and then for her nap. But as soon as we're admitted to the hospital (DD is very medically complex) or gets sick, we get thrown off again. I got to the point where I absolutely would not let anybody interfere with her nap schedule or bedtime, even in the hospital. No therapy appointment was so important that they needed to come during nap time and leave her confused for the rest of the week. And unless she truly needed a treatment, nobody needs to come do DDs BP or weight check at 12 midnight while we're in the hospital.

The biggest things for us aside from the consistent sleep schedule/routine has been establishing other sensory cues that mean bedtime. I'm sure your daughter will come to understand the words you're using and the sounds associated with sleep as well (soft music, special lullabies, bed time stories, etc). Since DD is additionally Deaf, we rely on special blankets that are only for bedtime, and do our "bedtime" sign with her each time we're bringing her to bed, then again once she's inside. On our way, we rub her hand past the perimeter of her room, stopping at anything she's inclined to touch or explore for as long as she wants to study it, and focusing on specific things that are are "touch cues" for each room--the light switch that is down at bed time, her sister's bed which feels different than hers, the couch in their bedroom which is a different fabric than the the leather couch in the living room, the rail of her crib, the double doors of their closet, everything goes in order and if we want to go to something different we rub along until we "find" it. It looks like my husband and I are blind if you were to see us going through the room touching things like this, but in DDs world these touch cues are her words and being given access to a ton of information through these touch experiences.

... Even when we go to the library for story time, we rub our hands along the long string of glass windows in between the doors as we walk in and then the librarian's desk and the row of books on the first bookshelf after that. We repeat all of this (in reverse) as we walk out. I think some people think we're weirdos when they see us for the first time (I'm sure they wondered why we were messing up their windows), but most people know us now and are very kind to DD and understand that she needs to touch her world. And really, most of the time I don't have the energy/time to care who thinks we're weird.

From what I understand blind babies who can hear catch on to the auditory cues of a parent's mobility description very quickly going through this kind of routine. Without sound, DD definitely still knows where she is, but just doesn't have the words to label it all. Ie. While in the kitchen she knows where to pull to make a drawer come out and make a big mess vs getting very excited pre-emptively when we're about to touch the stainless on the appliances (she likes the cold feeling of it). Or she knows the difference between our living room vs. kitchen based on whether she's feeling carpet under her or tile. You'll be amazed at all that your daughter picks up on.

I'm so excited for you to get started with your vision therapist! When we started to learn techniques for helping DD access what everybody else was getting, life felt a lot better. Not that it took away the pain or wishes that it didn't have to be so hard for her, but it helped me to realize that learning was still achievable ... One other thought for a resource: You can sign up for vision therapy through early intervention, but additionally the department of ed/department of the blind and visually impaired has a program where they send an educational coordinator to your house (totally free). Its usually a very experienced educator/vision therapist. They'll help you understand how you can access resources through the APH (for the most part that'll come in handy later, but there are a few things for younger kids), get you set up with braille resources, ensure that you're aware of all possible resources in the state, and put you into contact with the school for the blind, etc.

Also wanted to give you one more website to bookmark and check out when you're ready for it: familyconnect.org

Wishing you the best for your appointments next week.

DFZ21 · February 2012

Your words are so encouraging! Thank you so much.

Want a personalized experience?

Found out our baby is blind.

Re: Found out our baby is blind.

Choose Another Board

Search Boards