Blind and Visually Impaired Community
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8 year old daughter diagnosed with a retinal dystrophy (self.Blind)
submitted 5.3246709747942385y ago by Bunky05
Little bit of back story: My 8 year old daughter has always had vision problems. We, my husband and I, began noticing trouble with her vision when she started walking. She would run into things that to us would seem hard to miss. She had terrible balance and couldn't seem to stay focused. Her original pediatrician wrote it off every time we asked her to investigate it further, as we believed she couldn't see very well.
When she was 3 years old we switched pediatricians and finally got her eyes tested. She had 20/200 vision in both eyes, an astigmatism, and her left eye was slightly off center (sorry I can't remember the official medical terminology at the moment). We got her glasses and she could finally see.
Fast forward to around October of 2017. My husband and I began to notice she was losing interest in school. She no longer cared to participate at school, even though she wanted to (if that makes sense), we started getting calls from the school stating that they were concerned that her prescription glasses were no longer working and they wanted to know if I could get her eyes rechecked. I thought it was behavioral and so did my husband. We had dealt with her getting bullied before and decided to just talk the issues out with her. Well, it wasn't bullying. I called her eye doctor in December and got her an appointment for March, earliest we could get.
March comes and so does her appointment. Her eye doctor does his usual tests (takes pictures of her eyes, eye charts, etc...). He asked if we had any retinal diseases in the family. I said we do; my mom has Stargaurdts and I have a cousin and an aunt who have Retinitis pigmentosa. He then made an appointment with a pediatric specialist. The specialist confirms there is retinal dystrophy and her eyesight now corrected is 20/400 in the left and 20/60 in the right. Not sure of the other numbers.
The specialist wrote a letter of recommendation (not sure if that's the right terminology) to her school, primary eye doctor, and her pediatrician with his findings and his suggestion of visual aides to help her at home and school. He doesn't want to do the testing for RP or Stargaurdts right now because he feels it would be traumatic for her.
Here's the problem I'm having: the school doesn't want to give her the equipment she needs and instead want to test her educational levels (not sure how that factors in). They say the letter from the doctor is not enough. And until an official diagnosis they can't provide her the visual aides she needs.
I have already set our daughter up with a social worker for the blind, who is awesome as hell by the way. Her social worker is just as annoyed as I am with the behavior from the school. The school pushed so hard to have her eyes tested and now won't accept what the specialist said and they are implying it's all intellectual.
Should I just go ahead and have the tests for retinitis pigmentosa and Stargaurdts done so they will help her or should I put my foot down and demand she get the visual aides she needs. They are having our daughter sit out of important lecture time because they won't/can't accommodate her and I'm pissed at this point. Her specialist has said we will do the tests eventually but in his words "won't change the outcome", and that's why he wrote the letter.
Tl;dr: Should I have my daughter tested for RP and Stargaurdts to get her proper accommodations at school? She is dangerously behind her peers and the school won't budge until she gets special needs testing (they have said it won't be for visual aides but rather for her intellectual/ educational levels, they don't believe the specialist).
I just want to cry out of frustration at this point.
Thanks for taking the time to read this.
When she was 3 years old we switched pediatricians and finally got her eyes tested. She had 20/200 vision in both eyes, an astigmatism, and her left eye was slightly off center (sorry I can't remember the official medical terminology at the moment). We got her glasses and she could finally see.
Fast forward to around October of 2017. My husband and I began to notice she was losing interest in school. She no longer cared to participate at school, even though she wanted to (if that makes sense), we started getting calls from the school stating that they were concerned that her prescription glasses were no longer working and they wanted to know if I could get her eyes rechecked. I thought it was behavioral and so did my husband. We had dealt with her getting bullied before and decided to just talk the issues out with her. Well, it wasn't bullying. I called her eye doctor in December and got her an appointment for March, earliest we could get.
March comes and so does her appointment. Her eye doctor does his usual tests (takes pictures of her eyes, eye charts, etc...). He asked if we had any retinal diseases in the family. I said we do; my mom has Stargaurdts and I have a cousin and an aunt who have Retinitis pigmentosa. He then made an appointment with a pediatric specialist. The specialist confirms there is retinal dystrophy and her eyesight now corrected is 20/400 in the left and 20/60 in the right. Not sure of the other numbers.
The specialist wrote a letter of recommendation (not sure if that's the right terminology) to her school, primary eye doctor, and her pediatrician with his findings and his suggestion of visual aides to help her at home and school. He doesn't want to do the testing for RP or Stargaurdts right now because he feels it would be traumatic for her.
Here's the problem I'm having: the school doesn't want to give her the equipment she needs and instead want to test her educational levels (not sure how that factors in). They say the letter from the doctor is not enough. And until an official diagnosis they can't provide her the visual aides she needs.
I have already set our daughter up with a social worker for the blind, who is awesome as hell by the way. Her social worker is just as annoyed as I am with the behavior from the school. The school pushed so hard to have her eyes tested and now won't accept what the specialist said and they are implying it's all intellectual.
Should I just go ahead and have the tests for retinitis pigmentosa and Stargaurdts done so they will help her or should I put my foot down and demand she get the visual aides she needs. They are having our daughter sit out of important lecture time because they won't/can't accommodate her and I'm pissed at this point. Her specialist has said we will do the tests eventually but in his words "won't change the outcome", and that's why he wrote the letter.
Tl;dr: Should I have my daughter tested for RP and Stargaurdts to get her proper accommodations at school? She is dangerously behind her peers and the school won't budge until she gets special needs testing (they have said it won't be for visual aides but rather for her intellectual/ educational levels, they don't believe the specialist).
I just want to cry out of frustration at this point.
Thanks for taking the time to read this.
BaginaJon 8 points 5y ago
I'm a teacher of the blind and visually impaired (TVI) and work in public schools. Your daughter needed a TVI like me since kindergarten. Bring in an eye report to the school, request she gets assessed for visual impairment services. Most likely she'll begin learning Braille basics and will qualify for accommodations within the classroom. Anything less is no good. She needs an IEP immediately, which is a legally binding, and with her visual accuity, she will 100 percent qualify for special ed. services.
Your school district should contract or have TVIs on staff like me who will then come to the school, do a Functional Vision Assessment and a Learning Media Assessment, and then go from there.
Step one is bring in eye report. The school will make a referral based on that. You need to be communicating with special education department. If they give you shit, contact the special ed director of the district and complain about the administration at your daughters school.
Since you're in NC, here's some basic info based on a simple Google search.
http://www.ncpublicschools.org/esdb/
Your school district should contract or have TVIs on staff like me who will then come to the school, do a Functional Vision Assessment and a Learning Media Assessment, and then go from there.
Step one is bring in eye report. The school will make a referral based on that. You need to be communicating with special education department. If they give you shit, contact the special ed director of the district and complain about the administration at your daughters school.
Since you're in NC, here's some basic info based on a simple Google search.
http://www.ncpublicschools.org/esdb/
KillerLag 4 points 5y ago
It may be better to get tested for the two eye conditions and find out now. It would help to prepare, and give you an idea of what may be coming up.
Stargardt (https://nei.nih.gov/health/stargardt/star_facts) usually causes central vision loss (and colour vision loss), but rarely goes further. She may be light sensitive, so she may need to wear shades (even indoors) and prefer dim lighting. Often, they can still read large print, although sometimes it can be really, really large print.
Retinitis Pigmentosa is a lot trickier, because it can be so much more variable. But testing may help to give you an idea of the prognosis and give you time to prepare. If she needs any rehabilitation training, she may learn faster with some remaining vision.
Unfortunately, schools are not the best at adapting to children with disabilities, in some cases. Where you are from, do they have any programs to provide equipment at home? (In Ontario, Canada, we have the Assistive Devices Program, which helps to fund for adaptive equipment. It sounds like you are from the US, though).
Stargardt (https://nei.nih.gov/health/stargardt/star_facts) usually causes central vision loss (and colour vision loss), but rarely goes further. She may be light sensitive, so she may need to wear shades (even indoors) and prefer dim lighting. Often, they can still read large print, although sometimes it can be really, really large print.
Retinitis Pigmentosa is a lot trickier, because it can be so much more variable. But testing may help to give you an idea of the prognosis and give you time to prepare. If she needs any rehabilitation training, she may learn faster with some remaining vision.
Unfortunately, schools are not the best at adapting to children with disabilities, in some cases. Where you are from, do they have any programs to provide equipment at home? (In Ontario, Canada, we have the Assistive Devices Program, which helps to fund for adaptive equipment. It sounds like you are from the US, though).
Bunky05 [OP] 1 points 5y ago
That's what I'm thinking, I want to just do the tests now and know for sure. And to help us with this school problem. I'm in North Carolina, US. Her social worker is getting her set up for cane training now.
KillerLag 1 points 5y ago
Glad she's getting the assistance she needs!
jpw20 3 points 5y ago
I experienced all the same issues your daughter is facing now. It took some time for my parents to realize I had a visual impairment, but eventually my pediatrician recommended me to get tested for Cone-Rod Dystrophy, which is very similar to RP. I was ten and it was also new for my family because there were no visual issues in my family history. Me being tested and diagnosed ended up helping me a lot when it came to school. I got accommodations that the teachers, for the most part, respected. The school system sent a tutor out to my school to teach me braille. The accommodations allowed me to be academically successful.
I've also learned that self-advocacy is a great tool to have when it comes to being visually impaired in a classroom. I'm 18 and still struggle with advocating for myself, but I've learned that teachers will listen, especially if you have accommodations, a 504, or an IEP to back you up. The teachers sometimes just need a little nudge or reminder.
I hope this helps in some way and good luck! I understand the struggle.
I've also learned that self-advocacy is a great tool to have when it comes to being visually impaired in a classroom. I'm 18 and still struggle with advocating for myself, but I've learned that teachers will listen, especially if you have accommodations, a 504, or an IEP to back you up. The teachers sometimes just need a little nudge or reminder.
I hope this helps in some way and good luck! I understand the struggle.
Bunky05 [OP] 3 points 5y ago
Thank you all for your advice. It's much appreciated. This is a new world for our whole family so we are just trying to understand everything and be sure our daughter has everything she needs.
homerq 3 points 5y ago
The RP tests used to be a lot more grueling and took hours, now the tests are much easier and simpler and you should get them immediately to shut that damn School up. Afterwards, contact the district administration so that the school can be reprimanded for their unacceptable behavior. If that doesn't work, take it to the state level, with a few phone calls. The school is trying to shoehorn her into a learning disabled classification, because dealing with blind children is uncomfortably unfamiliar and therefore annoying to them. Make it clear to education authorities that their reticence has already delayed and denied her educational accesss, in violation of federal laws like the Americans with Disabilities Act.
Bunky05 [OP] 2 points 5y ago
I am going to be contacting her specialist next week and ask if we can go ahead with testing.
I am suppose to have a meeting with the special needs program director, her teachers, and her social worker soon to determine why we can't get what we need and what further steps need to be taken.
I am suppose to have a meeting with the special needs program director, her teachers, and her social worker soon to determine why we can't get what we need and what further steps need to be taken.
matt_may 3 points 5y ago
My children have both been tested for RP and it was no big deal (both negative).
OutWestTexas 2 points 5y ago
I understand your frustration and your tears. I have been there. My youngest child has developmental issues due to childbirth. I had to fight tooth and nail to get her the accommodations she needed even with all kinds of medical documentation. School personnel were very condescending. The LAW is on your side. Demand an IEP immediately. Get a lawyer if you have to. Sometimes just having a lawyer writing a letter will be all you need. There are also special education advocates you can hire. Keep us posted.
Bunky05 [OP] 2 points 5y ago
Thanks. I've got her scheduled with a retinal specialist now, in June, and we have our meeting with the school set up next week.
We, my husband and I, have decided that I am going to bump down to part time at work so I can focus on getting her set up with everything. Our jobs are so demanding, I feel we haven't given the situation enough attention.
I will update when we get more done. Again, thank you.
We, my husband and I, have decided that I am going to bump down to part time at work so I can focus on getting her set up with everything. Our jobs are so demanding, I feel we haven't given the situation enough attention.
I will update when we get more done. Again, thank you.
spooky_pudding 2 points 5y ago
I am a school psychology intern who works in a public school. The school may want to test her academics as part of an overall assessment for special education. In my state, when we are testing for special education, we give a cognitive test and academic test to determine the students present levels regardless of the assumed disability. Once the student qualifies for special education, they are able to receive the special equipment and teachers that they need.
estj136 1 points 5y ago
We had the same issues when I was growing up, I had an IEP all my life up until I graduated grade school.
Schools are notorious for not working with you. My father got really good at demanding for things. In the right situations he can deal with situations very trumplike. Hahaha! They often wouldn’t would not want to work with him, make excusses. I was criticized and was lacking here and there so I didn’t need these things or wasn’t benefiting from things they were giving me. They wanted any excuse to take it away. I was the smart leader type kid bored in school. So, part of it was laziness, but there was a lot of excuse finding. My father shouted them down until they turned blue. He asked for too much but because he kept at it, they gave. I had a set of braille books at school and one at home. Yes, they ordered me two, my father made them. They also in high school came to our house and installed Jaws. Hahaha! Some district people came over for tutoring. One of the higher level came too I think. I forgot why, but I think she was some type of administrator. I hated to go to my IEPS because they were loud, everyone turned in to my father souting and to an extent making them, bullying them in to submission. They felt so threatened that they hired two policeman. He wouldn’t ever get violent, but... they felt it.
Otherwise it’s hard work, you just have to go at it and deemand it and make them. The state of California and the education department in Sacramento knew who my father was, and was probably afraid of him. He had all the He said she said notes.
Chris Owens said blah blah blah to me at 3:30 pm. On this date.
My wife called at 1:30 on this date, and Jules South said this to my wife.
Very specific details. We talked for this long, very exact words was written down.
Only 1 request wasn’t given to him. He moved districts for 3 months and moved back. That time he wanted an L shaped desk for me, pretty unnecessary. He hired a few lawyers throughout the years.
I got books in to sets, throughout all grades my father would have it absolutely no other ways. “She’s not bringing braille volumes around, end of story, you better do it, I will complain to your superintendent”
I had jaws as I told you, My father fought for training in a braille notetaker. I had one throughout high school.I had many equipment, I had everything. That’s the only way dad wanted it!
Schools are notorious for not working with you. My father got really good at demanding for things. In the right situations he can deal with situations very trumplike. Hahaha! They often wouldn’t would not want to work with him, make excusses. I was criticized and was lacking here and there so I didn’t need these things or wasn’t benefiting from things they were giving me. They wanted any excuse to take it away. I was the smart leader type kid bored in school. So, part of it was laziness, but there was a lot of excuse finding. My father shouted them down until they turned blue. He asked for too much but because he kept at it, they gave. I had a set of braille books at school and one at home. Yes, they ordered me two, my father made them. They also in high school came to our house and installed Jaws. Hahaha! Some district people came over for tutoring. One of the higher level came too I think. I forgot why, but I think she was some type of administrator. I hated to go to my IEPS because they were loud, everyone turned in to my father souting and to an extent making them, bullying them in to submission. They felt so threatened that they hired two policeman. He wouldn’t ever get violent, but... they felt it.
Otherwise it’s hard work, you just have to go at it and deemand it and make them. The state of California and the education department in Sacramento knew who my father was, and was probably afraid of him. He had all the He said she said notes.
Chris Owens said blah blah blah to me at 3:30 pm. On this date.
My wife called at 1:30 on this date, and Jules South said this to my wife.
Very specific details. We talked for this long, very exact words was written down.
Only 1 request wasn’t given to him. He moved districts for 3 months and moved back. That time he wanted an L shaped desk for me, pretty unnecessary. He hired a few lawyers throughout the years.
I got books in to sets, throughout all grades my father would have it absolutely no other ways. “She’s not bringing braille volumes around, end of story, you better do it, I will complain to your superintendent”
I had jaws as I told you, My father fought for training in a braille notetaker. I had one throughout high school.I had many equipment, I had everything. That’s the only way dad wanted it!
Bunky05 [OP] 1 points 5y ago
Oh wow, good on your Dad! We are getting better at making our voices heard. We did get an IEP set up for her and she is due to begin braille this month. We have enrolled the children into a charter school and so far the school seems very receptive and more than willing to help, within reason. I am very excited for the opportunities that my daughter has been offered.
I am still very nervous about everything, but we are still learning to navigate her new normal. The only issue I am seeing now, is her eyesight seems to be getting worse over the last couple of months. I don't know if it's just because we have a diagnosis now and I am starting to notice more and more stuff, or if it actually is getting worse.
Thank you for your story!
I am still very nervous about everything, but we are still learning to navigate her new normal. The only issue I am seeing now, is her eyesight seems to be getting worse over the last couple of months. I don't know if it's just because we have a diagnosis now and I am starting to notice more and more stuff, or if it actually is getting worse.
Thank you for your story!
estj136 2 points 5y ago
No problem. It was interesting but not so nice. But I got what I needed.
That’s good don’t be shy about it. The fundamental differences is I don’t think we should gone as far with some issue. My father was willing to buy nothing, and depended on the school.essentially the state to give me anything. The school didn’t give anyone else the Jaws license and had no real need. My father could have bought it. That really wasn’t his responsibility. By my high school years he had a fairly good job. It costs about a 1000 dollars but seriously unethical to ask like that. I am very in between about the two set of books. Probably I could have carried something. Everyone else was carrying something sighted or blind, I carried nothing. While very nice, was it completely necessary, probably not. Realistically I couldn’t carry 4 braille books, they’re large volumes and heavy, but I don’t know....
Many things was reasonable, but also many things was a luxury. Especially my dad wouldn’t buy anything, Even if a braille ruler was 10 dollars 20 at most.
So, the lesson of the day, enough to be successful but don’t over ask, and I being much more conservative think it is the parents responsibility to get something especially if it’s as cheap as a ruler or a abacus or an protractor. Or a rubber mat.
Oh yes, I didn’t really need an abacus my dad liked the idea of me having it, reallystically I didn’t use it really and I kind of mentioned it. He didn’t care because that was his ways and his wants. But okay.
That’s good don’t be shy about it. The fundamental differences is I don’t think we should gone as far with some issue. My father was willing to buy nothing, and depended on the school.essentially the state to give me anything. The school didn’t give anyone else the Jaws license and had no real need. My father could have bought it. That really wasn’t his responsibility. By my high school years he had a fairly good job. It costs about a 1000 dollars but seriously unethical to ask like that. I am very in between about the two set of books. Probably I could have carried something. Everyone else was carrying something sighted or blind, I carried nothing. While very nice, was it completely necessary, probably not. Realistically I couldn’t carry 4 braille books, they’re large volumes and heavy, but I don’t know....
Many things was reasonable, but also many things was a luxury. Especially my dad wouldn’t buy anything, Even if a braille ruler was 10 dollars 20 at most.
So, the lesson of the day, enough to be successful but don’t over ask, and I being much more conservative think it is the parents responsibility to get something especially if it’s as cheap as a ruler or a abacus or an protractor. Or a rubber mat.
Oh yes, I didn’t really need an abacus my dad liked the idea of me having it, reallystically I didn’t use it really and I kind of mentioned it. He didn’t care because that was his ways and his wants. But okay.
[deleted] 1 points 5y ago
[deleted]
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