Bring your karma
Join the waitlist today
HUMBLECAT.ORG

Blind and Visually Impaired Community

Full History - 2019 - 09 - 04 - ID#cztwt4
8
Looking for advice on school help for kiddo (self.Blind)
submitted by lzilulu
Hi all!

Y’all have been so helpful as with my questions as I navigate being a parent of a kid with visual impairments. I wanted to get your thoughts on helpful tools/behaviors for my daughter in school - she just started kindergarten, so this is all new to us!

We’re working on getting an IEP in place, but I’m not sure what kinds of things are available to ask for and what would be helpful for her.

My daughter is 5 and has an optic glioma that has limited her peripheral vision (estimated 70 % loss in left eye, 30% loss in right) and no color vision in her left eye.

We use a slant board at home to write & use high contrast colors. I’ve asked that she be seated to the front of the room and the teachers should verbally tell her what’s on her desk (she won’t notice otherwise).

What are other things that you think could be helpful to mention to the school & her teacher?

Thanks so much!!
TK_Sleepytime 12 points 3y ago
I have had low vision in one eye only since I was a toddler. I had an IEP that wasn't really all that helpful honestly. It's great that her teachers will be made aware of her vision. Please also teach her that if she doesn't follow something or can't see what a teacher is writing or pointing to, it's ok to speak up and ask for help. I was such a pleaser at her age I was afraid to cause a disturbance by asking for help when no one else needed it. I was determined to be a "good student" even if that meant being lost sometimes. Self-advocacy will serve her her entire life and it's best to learn early. When I was in kindergarten the hardest thing was PE and recess. Kids everywhere, flying objects, eye-hand coordination... My mom would sometimes volunteer as a "motor mom" during our gym class. Took me years to realize she was just making sure I could see ok to participate and let the coach know where I was having issues.
lzilulu [OP] 1 points 3y ago
Thank you so much - it’s helpful to hear your perspective. She’s still wrapping her head around seeing differently & doesn’t totally understand how others see the world. Your thoughts on self advocacy are some great insight. Thanks!
razzretina 7 points 3y ago
First and foremost, get a Functional Vision Assessment done for her. That will help any teachers know what she can/can’t see and you will know, too. From there, if she’s eligible for services (which it sounds like she is), you will want recommendations from a certified Teacher of the Blind and Visually Impaired (TVI). This is the person who can help you the most and don’t be afraid to pick their brains but also to learn with them. Every student with a vision impairment is difficult and there’s no “one size fits all” here.
lzilulu [OP] 1 points 3y ago
Thanks for these tips - she’s getting involved with a local group that teaches low vision skills and they have some teachers that float in our area.
aam22 7 points 3y ago
Ask for evaluations:
-low vision
-orientation and mobility
-learning media assessment

These three will help you learn more about her vision and how she functions. Make sure you have a certified Teacher of Students with Visual Impairments (TVI), as well as a certified Orientation and Mobility Specialist (O&M, COMS). DoE needs to provide these specialists, don't let them tell you otherwise. Start taking a look at the Expanded Core Curriculum for students with visual Impairments. This will be your guide for services and techniques to focus on throughout her life.

I hope this helps
lzilulu [OP] 2 points 3y ago
Thank you so much! This is super helpful - I just don’t know what’s out there yet so your insight is just what I need to get started!
jrs12 5 points 3y ago
If her vision is adversely impacting her access to the education she needs a certified teacher of students with visual impairments on her IEP team. This teacher should be able to help discover what she needs in class in order to achieve the same as her peers. These teachers are often shared between districts so stay on top of things to make sure the accommodations you agreed on are happening.
lzilulu [OP] 1 points 3y ago
Thanks! Luckily, her school is the special ed hub for the county and the teachers are all in her school.
djflex90 2 points 3y ago
Does she know Braille? From somebody who went through school with a bit of usable vision, it definitely took a lot of the stress and strain off of my eyes when trying to see things far away on the board and stuff.
lzilulu [OP] 1 points 3y ago
She doesn’t, but I’ve been thinking of introducing it while her brain is such a little sponge & she’s learning her alphabet now anyway 😉
FrankenGretchen 2 points 3y ago
All of the above and a few little gigantic things.

When I was her age, I didn't know what I was missing. I took every adult's word as law and didn't know I could push their limits. If no one said anything about the blocks I could see sitting on a table outside where I was told I could be, I didn't acknowledge them. They thought I couldn't see them and I KNEW I wasn't allowed there so I didn't tell them I knew. It's a developmental thing, partly brain function and admittedly trauma/abuse, too but I've seen this pattern in many children without the trauma experiences. What I try to teach parents is that the right words and supports from her trusted adults can squash any perception of dependence or existence through permission she may have picked up and give her the option and skills to find/expand her own limits. This is a big part of self-advocacy, too.

It sounds like you aren't thinking outside her vision limits. Ie: if no one tells her it's on her desk, she won't know because she can't see it. She has hands. She can and should use those to augment her field of vision. Tell her what area is hers and encourage her to develop her own strategies for finding out what's there. This is humongous at home where her life is far less constrained than at school. Reinforce to teachers that they tell her when they've added something and where it is, yes, but this is her desk. It's not hers through permission or description of someone else. See the difference?
She will not have a shadow facilitating the placement of every object in her life. She will need this skill and it will boost confidence immediately. There's a game I play. What Can You Find? This isn't drudgery, btw. It's a puzzle game. Lay out some items on a table and let her discover and explore them. It gives you ideas about her current skill level and where she needs encouragement. It also teaches shape, texture, placement descriprions, direction, methods for distance measurement and gives her confidence in new situations. You can level up with impromptu stories about the items or interactive play, too. Remember, it's a game.

For you parents, once she's made a space hers, respect it. Leave things where she puts them. This is huge. We use muscle memory for finding things and that few inches can make a big difference when it's a pair of scissors. It doesn't mean she gets to never put her toys/school stuff away, again. It means she can find what she needs and put it where it belongs as prompted. I was a meticulous room cleaner even when I was her age.

She's going to be fine. She has parents willing to ask and learn and advocate for her.
lzilulu [OP] 2 points 3y ago
Oh my goodness! Thank you so much for all of your insight! (Sorry it took so long for me to respond ... parenting, you know?) . I’m learning more and more that it’s me that needs most of the training - you’re completely correct that I’m not thinking outside her limits and you’ve given me a lot to think on.

I’m trying so hard not to baby her or be over protective, when every instinct is telling me to guide her through everything. It’s pretty amazing to see all of the skills she’s come up with in her own & I’m sure I’ll be astounded each day as she grows.

I’ve made a list of your suggestions for her teachers and I’ll be bringing them up to them ASAP. You’re so sweet to take the time to give me so much information and a little pep talk. Thanks again!
FrankenGretchen 1 points 3y ago
No worries! I'm glad to help.
coolcaelin123 1 points 3y ago
I'm 14 yrs old an have oculocutaneous albinism. My acuity is 20/200 corrected with little depth perception and photophobia.

I'm in grade 9 and have never been on an IPP/IEP, never needed it. Do you guys have itinerant teachers where you live? They are very helpful for making sure adaptations are met, using assistive tech, etc.

When I was in kindergarten, what worked for me was using a HumanWare CCTV. this would eventually become obsolete once I got older. If your daughter is tech savvy, I would absolutely recommend the Prodigi Connect 12 until. Once I got to grade 7-8 I switched to an entirely paperless workflow, using a 15 inch laptop and iPad 2018 with apple pencil. Used in combination with Notability, google drive and classroom, and a word to pdf converter app, I now do sheets on my iPad and write on my laptop.

Remember to not be afraid to ask teachers to call your daughter's name instead of pointing, keeping the lights dim if need be, or, I do that and wear a ball cap at school.
This nonprofit website is run by volunteers.
Please contribute if you can. Thank you!
Our mission is to provide everyone with access to large-
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
©2023 HumbleCat Inc   •   HumbleCat is a 501(c)3 nonprofit based in Michigan, USA.