Blind and Visually Impaired Community
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My daughter who is a year and a half was diagnosed with septo optic dysphasia... (self.Blind)
submitted by redfalcon98
It’s extremely frustrating to see many children her age and younger walking and she is unable to do so without a walker, let alone stand alone for more than a few seconds. Her therapists say that she’s completely ready to walk, but is afraid to due to her vision impairment. I don’t know any other parent (or anyone in general) with this condition and would love some advice or personal experience on how to help her be able to get up and go!
BaginaJon 6 points 4y ago
Find your local or state school for the blind and start early childhood intervention as soon as possible.
redfalcon98 [OP] 2 points 4y ago
Yes! She is in early intervention and has 4 different therapists (PT, OT, vision and vision mobility) and they’ve been working on her walking on what feels like months. I’m just trying to get some kind of idea of how behind she’ll end up being with this and some kind of encouragement or experience that anyone has had with this
KillerLag 2 points 4y ago
There is no straightforward answer for how behind someone may be. Kids can be quite variable, and they may be behind for a little bit and suddenly catch up.
This particular condition is challenging because there are many possible issues. One common issue is the lower growth hormone, which can also lead to obesity or lower muscle tone... which then makes physical things even harder.
Are they using a standing walker, or a standard walker?
This particular condition is challenging because there are many possible issues. One common issue is the lower growth hormone, which can also lead to obesity or lower muscle tone... which then makes physical things even harder.
Are they using a standing walker, or a standard walker?
redfalcon98 [OP] 2 points 4y ago
That is so true! Luckily for us her growth hormones don’t seem to be effected. She gets blood tests every half a year or so and they’ve all come back good! She’s using a walker currently and walks all around with it, she’s like totally ready and able to walk but is just afraid to! She can even climb up on our bed and the couch, it’s just so frustrating! Do you have a child in your life with this condition as well?
KillerLag 2 points 4y ago
No, but I've worked with a number of them. For the mobility instructor, did the make any suggestions for using a pre-cane? It can be attached to the walker and give some haptic feedback on what is happening in front. It basically looks like a rectangle made of PVC piping.
http://www.wonderbaby.org/articles/anticipators
https://ambutech.com/shop-online/rectangular-amd
She may be too young for it, so that may be why they didn't suggest it. But something good to know about, it makes future cane training easier (if she needs it).
http://www.wonderbaby.org/articles/anticipators
https://ambutech.com/shop-online/rectangular-amd
She may be too young for it, so that may be why they didn't suggest it. But something good to know about, it makes future cane training easier (if she needs it).
redfalcon98 [OP] 3 points 4y ago
Hey! Thanks so much for your advice and feedback. The tough part is that she’s not entirely blind, and we think she sees more than we really think. I’ve heard so many variations of what parents have experienced with this particular condition, it would be really great to compare and contrast with those, but I don’t know anyone in particular. Are you very familiar with SOD with teaching in a school for the blind?
tasareinspace 2 points 4y ago
My daughter has ONH/SOD as well. She's 11 now and doing super well. But yes. There have been delays. Knowing other blind/VI kids and their parents was super helpful, if you have access to any support or social groups, I cannot overstate how helpful that was when she was little. Some of those kids she still sees at events. Your state's commission for the blind/VI should be able to help you find what resources are available.
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If you want to chitchat, feel free to message me!
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If you want to chitchat, feel free to message me!
redfalcon98 [OP] 2 points 4y ago
I would love to chat! Does your daughter go to a public school? Has she been able to read and integrated with other kids well? When did she start to walk? My little one is climbing all over and walking all around with her walker but is just too afraid to start walking by herself it’s so frustrating!
tasareinspace 1 points 4y ago
She does go to public school! SOD has a huge range of 'what theyre able to see', for my kiddo, she's completely blind in one eye, and the other has about 20/200 vision, and she has nystagmus, so she's got trouble focusing on things, and I dont know this for a FACT but just from observation I think she has really big problems with her peripheral vision. But she can read! She prefers large print (we did a couple years of braille, but she's going to middle school next year and it's harder to work braille instruction into her school day, and she's got the basics down if she ever needs it).
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Socially, she's a little smaller than most of the kids and she's sometimes got trouble keeping up, but she has a couple friends that she gets along really well with. Some of her best friends are autistic, which works out really well because they understand what its like to need a little space or a little more time to process stuff.
I remember Jae started walking kind of late, and I wanted to find out exactly when so I took a trip through my digital memory lane and the first videos I have of her walking on her own are when she was about 18 months. She also totally skipped crawling. I think some VI kids have a hard time giving up the sort of... stability of being able to feel what's in front of them, like they can with a walker, with a walker, or clinging onto furniture they have a lot more feedback about what's there.
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Socially, she's a little smaller than most of the kids and she's sometimes got trouble keeping up, but she has a couple friends that she gets along really well with. Some of her best friends are autistic, which works out really well because they understand what its like to need a little space or a little more time to process stuff.
I remember Jae started walking kind of late, and I wanted to find out exactly when so I took a trip through my digital memory lane and the first videos I have of her walking on her own are when she was about 18 months. She also totally skipped crawling. I think some VI kids have a hard time giving up the sort of... stability of being able to feel what's in front of them, like they can with a walker, with a walker, or clinging onto furniture they have a lot more feedback about what's there.
redfalcon98 [OP] 1 points 4y ago
We’re also getting her evaluated for autism next month which I’m really worried about because I know how tough that can be for a parent!
redfalcon98 [OP] 1 points 4y ago
Oh wow! Well that’s awesome to hear. I’m just so worried about her but at the age she’s at now it’s so tough to gauge anything and all that we know is that her therapist are basically saying she’s behind in everything which is so frustrating.
She does great with the walker, but is just scared to let go. Her feet also turn out a bit which they’re thinking she might need to have ortho look at, but her one vision mobility instructor (who is my favorite) says it’s all vision related and not to push her as much as the others try to.
She does great with the walker, but is just scared to let go. Her feet also turn out a bit which they’re thinking she might need to have ortho look at, but her one vision mobility instructor (who is my favorite) says it’s all vision related and not to push her as much as the others try to.
tasareinspace 2 points 4y ago
it's a really fine line to walk, pushing your kids to do what they are capable of, out of their comfort zone, into a place of growth, but not pushing them into their panic zone. It's super hard, but as long as your daughter knows you support her and are there for her, she will do great. Just maybe at more of her own pace than others.
jrs12 2 points 4y ago
Hey there! First and foremost keep your expectations of your daughter high. Children with visual impairments are at risk of falling behind, and the gap will widen between them and typical peers faster than you can imagine if you start making excuses for why your daughter can't do things. Lots of parents fall into that trap. Don't be one of them. With that being said, it's totally normal for kiddos to miss milestones or completely race through certain phases. Don't be surprised if she's not really moving much then showing up behind you in random rooms when you least expect it. Be present when vision and mobility services are at home. Ask them for things you can be practicing when they aren't there. Consider joining National Federation for the Blind. I don't like them because as a teacher with vision, I often get into arguments with people who think I'm stealing jobs from people with vision loss or pushing my sighted agenda. The group is FANTASTIC for high expectations though and acting as support for people in your situation. Consider toys that offer sound. Encourage cruising on furniture. If you think your daughter is ready, get some push along toys are ride on top toys. They give a little preview of the environment like a cane would. If you want, go ahead and get her her first cane. Your mobility specialist may disagree, but do what you think is best for your daughter.
saharacanuck 2 points 4y ago
Are there any support groups both online and offline for people with your daughter’s condition?
redfalcon98 [OP] 1 points 4y ago
I wish there were more specific ones! We get a parent to parent website that I think connects people with children in EI, but I would love to speak with people who have children with the same condition you know?
hopesthoughts 2 points 4y ago
I could put you in touch with my mom who has no clue what Reddit is but does use Facebook and email.
redfalcon98 [OP] 1 points 4y ago
I haven’t thought about Facebook groups but that is a good idea!!
hopesthoughts 1 points 4y ago
Mom does use Facebook groups. Getting her to sign up for Reddit would be a bit of a trick though.
saharacanuck 2 points 4y ago
If there is no local or even international group, why not start a Facebook page at the very least? Maybe if you reach out to the group you mentioned you can be connected to other parents.
hopesthoughts 1 points 4y ago
I was diagnosed with this condition back in 1983 when I was born. Although I think it was an incorrect diagnosis because despite some spacial issues, (my sense of direction is nonexistent!) I do OK with things, and don't have any other delays.
redfalcon98 [OP] 1 points 4y ago
SOD? Really?! That’s so interesting I didn’t know how long it’s been around. It’s so rare! What is your vision ability range?
hopesthoughts 1 points 4y ago
By the way it's dysplasia, not dysphasia. Dysphasia has to do with forgetting words while speaking. My vision range is absolutely nothing lol.
redfalcon98 [OP] 0 points 4y ago
Ah I feel so dumb! Thanks for the feedback haha those are super similar words but totally different meanings. Oh wow :( so, sorry stupid question, but are you able to read or anything at all?
hopesthoughts 2 points 4y ago
I'm not able to read print of course. I had major data retention issues with braille when I was in school. Like as in I'd turn the page and couldn't remember what I just read. Because of that mom had to help with homework by reading the text to me. I never really got very far on my own. I always learned better when I had someone reading to me. That's still the case today.
laconicflow 1 points 4y ago
I don't know anything about this condition. Will your daughter have other major problems aside from being blind?
redfalcon98 [OP] 1 points 4y ago
She’s actually not blind! They aren’t sure of her specific range of vision yet but she’s definitely not blind, which is great. There are chances of her having pituitary issues but luckily she’s tested out of having any as of now
KillerLag 1 points 4y ago
Other than vision loss (due to various reasons), seizures and low muscle tone are common. May also be short due to lack of growth hormones, intellectual impairment, developmental delay and other hormonal side effects.
hopesthoughts 1 points 4y ago
I had seizures until I was 5. I was on growth hormone until I was 13. My doctor wanted me to take it as an adult. I tried to do this a couple years ago, but got a headache that lasted for 12 days and kept me in bed most of the time. We stopped it after that.
laconicflow 1 points 4y ago
I'm sorry to hear that. I'm just blind and could give tips for that.
[deleted] 1 points 4y ago
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