Last summer Ilse was interviewed for the website of the Eye Association. Just like every teenager and perhaps every person, Ilse wants to be normal and not different. We think it is a wonderful interview and Ilse is a great one!

By: Marijke Osinga

Her books had a larger font than usual and were A3 format. “I sat close to the board to read what was written on it.” The teacher showed what she showed to the class, Ilse from close up, so that she could also see it clearly. Ilse cannot distinguish all colors well. Green and blue, for example. The children in her old class thought it was completely normal to help her every now and then.

Before we know it, we are already in the middle of Ilse's story. On August 3, I talk to her to hear what it's like for her to have problems with her eyes. We are sitting at the table in the kitchen of a spacious 30s-style home. Her mother has also joined us. As I passed by, I caught a glimpse of her sister, who is two years younger than Ilse. Her father, who is working from home due to the corona pandemic, also introduced himself to me.

Safe cycling

After the holidays, Ilse plans to simply cycle to her new school, just like her new classmates. A secondary school in Kampen about 4 kilometers from her home. She has already practiced the route several times. At crossings she waits a little longer than others because she wants to be sure she can cross safely. Estimating depth and therefore the distance of a car is sometimes difficult. Very sunny weather, darkness and twilight make it more difficult to see everything clearly. She has received tips and suggestions several times from an employee of Visio (expertise center for the blind and partially sighted) to optimize safe cycling. Ilse cycles on an E-bike, not only because she thinks it's cool, but also because she has increased muscle tension in her legs and an E-bike makes cycling a little easier. “We cycled a lot during the holidays. Now the four of us can enjoy cycling and Ilse likes it too,” says her mother proudly. Ilse nods affirmatively.

Digital

“You'll have to carry quite a load if your books are that big,” I note. “No, all learning material, except for mathematics and biology, is digital,” Ilse answers. “And on my iPad I can zoom in and enlarge the text. I can do the same on my iPhone, so that I can see everything on it just like on my iPad. For mathematics and biology, I receive my books digitally via Dedicon.” (Dedicon is an organization that makes teaching materials, images and text accessible to people with a reading disability).

Care Coordinator

The new school strives to offer all children equal opportunities. Ilse and her parents have already visited the care coordinator. He opened up to the concerns the family might have. Ilse's mother emphasizes that they do not have that, but would like to point out a few points that are important to Ilse to make going to school a success for her. You can think of a locker in a recognizable place and exploring the school in a quiet moment or getting to know Ilse's coach. Of course, in such a digitally oriented school, the ICT options are also important for Ilse. The care coordinator is open to it and notes what is needed. “Luckily Ilse has a very good memory. She compensates a lot with that,” says her mother.

Korfball and cello

Ilse plays korfball. Until recently, the basket was a bit lower because she was in a D youth team. Now she will have to learn new skills because the basket is at the usual height for korfball. Ilse also plays the cello. She sits a little closer to the music notation than usual to be able to read the notes properly. The music sheet uses the colors red, pink, gray and blue to indicate where she should put her fingers. “I can see this clearly because these colors differ enough from each other. And here too my memory is very helpful. Together with my music teacher, I print it in my head,” says Ilse. “The music teacher is always happy. That makes me happy.” Her sister's hobby is diamond painting. Here you make a painting with colored crystal stones on canvas, on which the pattern of what you need to make is already clearly indicated. Ilse also likes this, but it is difficult to read those little symbols. She uses a magnifying glass with a light in it to see it better.

Nice ophthalmologist

Ilse has a mutation in the OPA3 gene, a hereditary condition. Also called ADOAC. Autosomal Dominance Optic Atrophy and Cataract. A condition in which the optic nerve becomes progressively thinner. She also has increased muscle tension in her legs and a reduced sensory nerve. Because she has exercised very hard with a physiotherapist, the muscle length in her legs is long enough to be able to walk properly. Ilse regularly visits her ophthalmologist in Rotterdam. “I like him the most. He is very nice and funny,” she says. “I didn't like it as much that I had a lot of examinations last year, with the neurologist, the clinical geneticist and all kinds of eye examinations. But I'm happy with that for now.”

Faster

Cleanliness and order are not Ilse's best qualities. And if you add to that her somewhat poorer eyesight, it is logical that Ilse often loses something. Socks, shoes and her phone never seem to be where Ilse thinks she left them. Her sister is often too quick for her in such cases and has already found something when Ilse is still looking around. “I sometimes find it annoying that my sister is faster at everything. Then I'm jealous of her.”, she sighs. Making dances with the TikTok app is something Ilse likes to do. She is also on Instagram and Snapchat. Ilse also enjoys chilling with her friends or going to the pool with them. Despite her desire to be normal, Ilse is curious about fellow sufferers.” I would like to know how they live and how they solve things,” she concludes.

About Marijke Osinga

Marijke Osinga is a lawyer. She also writes stories and conducts interviews. She does the latter because she would like to do something about the image of people with disabilities. She herself is visually impaired and has left-sided spasticity. She has an 18-year-old son with whom she lives in an apartment. At the Eye Association she is part of the members' council.

Ilse's story may also be recognizable to many parents. As the Cure ADOA Foundation, contact between fellow sufferers is one of our main goals. We have already put many fellow sufferers in touch with each other and we will certainly continue to do so.

Read the original story: https://www.oogvereniging.nl/nieuws/leven-met-een-visuele-beperking-ilse-boekhout-2008/