Your Stories – The strongest one-pounder: Part 2 – in school with an individualized education plan

This is the second part of Dina’s story about her son Will.  Part one introduced her son “Will,” now 8, who was born prematurely and subsequently spent 5 long months in a Newborn ICU.  I asked her to write more about working with the school system to support a legally blind child.  – Ann Z

Will endured numerous surgeries trying to save his vision, and we are buddies with a lot of eye specialists as a result! My family considers ourselves lucky that we succeeded in saving his eyesight in his left eye. Given that Will has only one eye that works, it is essential for him to wear glasses to “protect” that eye. Ever since Will walked, he has worn his glasses every waking moment. Glasses, sunglasses, swim goggles…you name it! His school self-portraits consistently reflect a little boy with glasses.

Will entered the public school system when he turned three. As a result of being born prematurely, he needs extra help in a number of areas, so we have always worked closely with a large school team. Will has a curriculum custom tailored for his special needs (called an “Individualized Education Plan” – or IEP). The creation of his IEP is a team effort, and it outlines every accommodation needed and every specialist that works with him to put him on equal footing with his peers. Will’s IEP includes a classroom teacher and 10 specialists; the document is legally binding and is negotiated annually, with periodic addendums made, as needed. His specialists include many therapists, which are on staff at the local elementary school, including a special ed teacher, physical therapist, speech therapist, and occupational therapist, among a few others. His IEP identifies all specialists required to meet his needs, whether or not they are on staff at the school; there are two specialists brought in regularly because of his low-vision status: a “teacher of the visually impaired” (TVI) and an “orientation and mobility instructor” (O&M).

The TVI works directly with him and provides consultation to the rest of his educational team to help him integrate him into the mainstream school. She helps adapt materials (make sure books and materials have large print, makes sure the library gets books for him, etc), educates the staff on what he can / can’t do (how close he needs to sit to see things, etc) and acquires special tools and devices (like magnifiers, computer programs that blow up text, etc) and works with him and his teachers on using them in the school. Basically, she helps him to learn what other kids without visual impairments are learning.

An O&M instructor’s role is to teach him to use all of his senses so he is able to travel safely from one place to the next, given his low vision. Basically, he qualifies for O&M support since he is legally blind. I have mixed feelings about O&M support because I have learned that O&M philosophy can be “black and white.” When Will first entered the school system his O&M teacher wanted him to use a cane for the blind simply because his test scores resulted in a legally blind classification. However, with one well-functioning eye, he didn’t demonstrate any issue in navigating, so our family didn’t see any need for a cane. We battled this issue with one O&M teacher for a number of years. With our very large IEP, this was the only point of contention and it just simply wouldn’t go away since philosophically, the O&M teacher and our family couldn’t see eye to eye. My family got doctors opinions backing us up, and eventually a lawyer and special ed advocate. Happily, we never needed to go to litigation, as the O&M teacher realized that philosophically we were never going to get on the same page; she decided to transfer my son to another teacher. When we first were transferred to the new teacher, her gut instinct was “he’s legally blind, he should use a cane.” We felt the pit in our stomach of “here we go again.” But once she saw how easily he navigated through the world, she realized that he really doesn’t need one. To be honest, he doesn’t have good vision and I let the school team know that I wouldn’t be opposed to him learning how to use a cane if he needed it “sometime when he was older and alone in a new place” (like on a subway, or in a dark movie theater it’s not the top priority right now. The school agrees with us, his current O&M agrees with us, and most importantly, we can collaborate together to generate an IEP I am extremely happy with.

Will getting his new eye

Will getting his new eye

Sadly, Will hit a major snag last Labor Day weekend; out of the blue he woke up one morning wit his blind eye swollen shut and with severe light sensitivity in his good eye. He got into the doctor a few days later, but it was so swollen they couldn’t examine it. They scheduled an immediate exam under anesthesia to figure out what was going on. There was no clear diagnosis, except to say that sometimes when an eye has been not functioning for many years it has a meltdown, which is what happened to Will. He started experiencing glaucoma and his ducts were clogged, and the swelling was putting pressure on his good eye. There was no alternative but to remove his blind eye and replace it with a prosthetic. It was a psychological hit since we thought we were done with all of the “big eye stuff,” but, Will was a trooper, and our immense school team was supportive through every step. His friends made him cards, the principal welcomed him back, and when Will said he wanted to tell his class why he was wearing a patch, we didn’t quite realize he meant he was going to tell them everything…but he walked into school with his head held high and he shared every last detail, and he became the hero of the second grade. Which is why, in my eyes is his the strongest one pounder ever.

For more about successfully navigating through the school system, practical tips for handling the curve balls that come your way, and topics related to juggling work and life, I welcome you to visit my blog: http://frazzledworkingmom.blogspot.com/

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5 responses to “Your Stories – The strongest one-pounder: Part 2 – in school with an individualized education plan

  1. wow, you are an amazing woman Dina and you have a gorgeous, courageous, inspiring little man too! Thank you so much for sharing your story. He is lucky to have such a strong and positive mom.
    Warm regards,
    Ingrid
    Mum to Paris – nineteen months (she wears glasses for short sight and intermittent squint)

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    • Hi Ingrid – thank you so much for your thoughtful note. I really appreciate your kind words! It’s been a long road, but hopefully it’s made us stronger in the end. I wish you and Paris luck with her eyesight – I know it can be tricky getting them to wear glasses at that age! Thank you again, Dina

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  2. As a public school teacher for 5 years I know that IEP’s can be intimidating for some parents (they are for teachers) and that informed and knowlageable parents seem to be the best advocates for their children. It sounds like you are a great advocate and have a great team in place. I’d be interested to know how the classroom teacher makes accomidations within the classroom.

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    • Hi. Thank you so much for your note. The IEP process is so intimidating; I had a hard first couple of years with it because we went through the difference in opinion over the cane, but I think because of that, it forced me to learn the “ins and outs” of the process, so in the end, I think that problem ended up being a blessing. And yes, I have a great team (& large team) in place and I’m lucky for that!

      In terms of tools we have in place, he has a “video magnifier” to blow up classroom materials and they’re teaching him to use a hand-held magnifier and a monocular. They also blow up all materials & / or use large-print books, and they also get books on tape sent to them from a school for the blind. They also blow up fonts on the computer. Then in terms of the intangibles, they do things like verbal cues, make sure seating is appropriate / he’s up close (& train all teachers / specialists); in gym they make sure he doesn’t participate in contact sports; they’ve also put bright tape on the steps to help travel safely since he doesn’t have depth perception.

      It’s a lot, but he does well, and it works.

      Thank you for asking. Have you ever had a visually impaired child in your classroom?

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  3. Thanks to your son participating in the study, my sons vision was saved =) My son was born at 27 weeks and diagnosed with ROP 2 weeks before his due date. Just today we found out that he needs glasses. I found your story while searching for information about a 1 year old wearing glasses.

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