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American Foundation for the Blind® | National Association for Parents of Children with Visual Impairments

18 month old with optic nerve atrophy

Our son has optic nerve atrophy. When he was diagnosed @ 4months of age, we were told that he may be able to only see shapes or shadows, due to the severity of his optic nerve damage. As he gets older we know he can see much more than we ever expected him to (he is now 18 months old). He will go for toys across the room. He maneuvers around the house by crawling and has no problems. He loves musical toys. He does seem to get left behind in play quite a bit with his siblings, which is kind of hard to watch because he so badly wants to be involved. I'm hoping that he will learn to play with them, but part of me wonders if he will use imaginary play like his brothers and sister. We do encourage his love of music, b/c that is what seems to motivate him the most---most of his toys are musical in one way or another. Maybe this is overkill, but if it doesn't make noise have any interest in it at all. Anyone have suggestions to ecourage imaginary play? Any cool toys that your child just loves?

There are currently 11 replies


Re:18 month old with optic nerve atrophy



My 18 month old grandson, Bricen, also has optic nerve atrophy. He sounds very much like your son in his progress. All his cars and truck sat untouched until we purchased Step 2 chunky people cars and buses. They are very large and easy to handle. Bricen's favorite thing to do now is push his bus and van all around the house making "car" noises. My grandson is in Early Intervention and is about 6 months behind developmental. He cruises around furniture and babbles all the time; however, he's not walking by himself and talking. Is your son walking?


Re:18 month old with optic nerve atrophy



No, my son is not yet walking--but like your grandson he can walk along furniture independently, which just started about 1-2 months ago. He has just really started to babble and seems to understand alot of what we talk about, but will only say one-word sentences.

We hope that our son will be walking independently by 2 years of age, but as we are learning we really shouldn't put time frames on anything. Vincent is also involved in the Birth to 3 program in South Dakota---and he is probably about 6 months behind too. It's kind of crazy that they would be so similar. It really makes me feel better knowing that he is on track with one of his peers. We just started a new horse therapy called SPURS. They say riding a horse will help them learn balance and will help them with walking better/sooner. He loves it---but then he's not afraid of much!


Re:18 month old with optic nerve atrophy



Hi,
How is the horse riding going? It was fun for my son and did help his balance somewhat. Imaginative play will probably come later for him. Keep us the musical toys - you are definitely on the right track to provide stuff that he prefers.


Re:18 month old with optic nerve atrophy



My daughter is 7 years old and has bl optic atrophy. I didn't get a proper diagnosis until she was 3 year old. She loved toys with music as well, but hated dolls that talked. She always liked bright colored toys, loved little people toys (esp the ferris wheel that played music). I allowed her to watch television very close and hoped she'd learn more by seeing what people do up close. When she entered preschool she received some social skills for a few years. She was a side by side player for a long time, it is hard to see all they miss. You never realized until now all the visual cues we use socially. She loved Gymboree and brightly colored board books and any tactile toys, lots of arts and crafts and tea parties. Don't worry, her room is now full of toys and she never stops playing. Remember much of our sight is memory and recognition. She sees so much better now without her condition improving she justs is more familiar with things. No longer is every white vehicle the ice cream truck. Oh she has grown so quickly.


Re:18 month old with optic nerve atrophy



Does your daughter read large print or braille? How did it go when she began school? Vincent is young yet, but of course we are already anxious for the day when he heads off to school. I'm so thankful I don't have to deal with that just yet.


Re:18 month old with optic nerve atrophy



I have a 11 year old son with optic nerve atrophy. Most people and even his opthamologist don't understand how he does so well with such limited vision. His doctor once said "He uses every little bit of vision that he has to the fullest". He memorizes alot of things, lectures, rooms, places he's traveled. He has never been interested in Music like his blind peers. He likes to listen to it, but has no rythym{spelling?}. One thing I will recommend to start early is pre-braille or braille instruction. If you are involved in any early educational program make sure they start him in tactile awareness activities to get ready for braille. We did not think my son would need it because he could read print but at 4th and 5th grade level the words are just too big and he can not keep up with the rest of the class. He is struggling to learn braille now, he has a very hard time sensing the dots with his fingers.


Re:18 month old with optic nerve atrophy



I think it is important that young children have a "functional vision assessment" and a "learning media assessment." For some of us, we really want them to read print - but it is much easier to learn Braille when you are young. Some adults with low vision use both.


Re:18 month old with optic nerve atrophy



Hello again. Abigail 7 years soon to be 8 years is such a great girl. She uses large print for reading, we tried braille but she was very resistant and now tries to read the braille with her eyes. We too are concerned about the level of reading increasing and struggling with "keeping up" as the school work progresses. We may be at the same point wherein we are trying to teach Braille, but I'm hoping the large print, new reading glasses and books on tape will be our saving grace. She still doesn't enjoy books on tape too much but we will be forcing them on her starting right now!!! It always seems that there is something else we have to have to do along with all the regular daily activities. Its hard to keep up but we do our best. Her Low vision doctor states that she sees great for her condition. Low vision seems to always place you in limbo. She just got a pair of special reading glasses and she absolutely loves them to the point where I wish I pushed for them sooner. My advice is to get them as soon as they are interested in reading (of course I'm not a low vision doctor) but she is so happy with them and they really help her with up close work, I could have used them for beading and all her OT work, I really wish the doctor had offered them earlier rather than just a monocular. Abigail loves music and as one of you said she is also a bit off with the rythm (spelling as well) but it never stops her its quite funny and my husband and I laugh. She is as obsessed as any other girl her age with High School Musical and loves to pretend to be the characters from the movie. She is involved with pretend play with her sister but never played as well alone as her sister did and still does. She's great at pretending to listen to the teacher and fakes out everybody that she sees just fine, of course until she falls and surprises everybody that she really can't see that well. People overestimate her site. She uses a CCTV in class it has a flipper camera and great flat screen. It is a beautiful unit and we are lucky to have a great vision teacher who choose this unit for the school to purchase. At times she answer to the monitor rather than the teacher (its funny I'm told) and she has been caught using the camera to look at her classmates as well as her teeth. But it helps her see the teacher and the board, she just got this in 2nd grade. Now I'm debating going to the drive in with her this summer just for the experience as she'll never see the screen any feedback on this subject as I feel we should all go to the drive in once in our lifetime. Thanks for listening and sharing I enjoy it.


Re:18 month old with optic nerve atrophy



Thanks for all the information! Our son Vincent will be 2 years old this fall and we are really now starting to see some frustrations, but the advice on pre-braille instructions, tactile awareness activities, the CCTV, and the glasses all helps. The comment about being in limbo with a low vision child is very much where we feel we are----we were struggling, wondering if we were going to need to be gearing up for him learning braille or if he would just read large print. After reading what all of you have said, my husband and I feel that we will definately be teaching him braille.

And thanks to the advice from Judith, we will be having a functional vision assessment and a learning media assessment in the near future. Sometimes it all seems so overwhelming with everything else that a person needs to keep up with---we have 4 children and are constantly busy----but I guess if the house doesn't get clean today it will get done tomorrow, right? Someday when I can call myself "grandma" I will have the clean house (or maybe I will play with my grandkids instead!). Thanks for writing back--support is so important.
Krystal


Re:18 month old with optic nerve atrophy



Hi Krystal,
Glad advice was helpful. See what the assessments show, but I really encourage you to expose him to Braille at a young age - it really avoids the resistance problem many parents encounter when trying to introduce Braille later on.
Judith


Re:18 month old with optic nerve atrophy



How is your child doing, now that they should be ready for kindegarten. We discovered with my son, that his inability to read braille was not resistance on his part, but he has sensory processing disorder. So he will not be learning braille, he is a strong audio reader. I would like to hear how your child is doing and what you have accomplished with him over the years.


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