Special needs: Emli the go-getter

Having a partially sighted child means makingki some changes to your parenting and lifestyle, but this family makes it look easy, writes Margot Bertelsmann

JANINE AND HENCO Jordaan from Durbanville in Cape Town are proud parents to three children: Eckhardt, 8, Ilahn, 6, and their youngest and only girl, Emli, who is four.

They describe themselves as an active family and spend most of their weekends hiking in the mountains and riding bikes.

These days, they have to make a few adjustments to their routine. Emli was born in 2014, after Janine had a normal pregnancy, and soon after birth she was diagnosed with a rare condition called microphthalmia, in which the eyes fail to develop normally.

WHAT IS MICROPHTHALMIA?

The UK’S National Eye Institute will tell you that anophthalmia and microphthalmia are both congenital eye disorders that “develop during pregnancy and can be associated with other birth defects”. Microphthalmia refers to abnormally small eyes and usually decreased vision, while in anophthalmia the eyes are absent. It affects about one in every 5 300 babies born in the US, according to the Centers For Disease Control and Prevention. Nobody knows the exact cause of the conditions – there seem to be genetic links, but environmental factors also play a role.

“Children with microphthalmia may have some residual vision,” according to the Eye Institute’s website. “In these cases, the good eye can be patched to strengthen vision in the microphthalmic eye. A prosthesis can be made to cap the microphthalmic eye to help with cosmetic appearance, while preserving the remaining sight.” In theory, says Janine, Emli is supposed to be blind.

“When she was three weeks old, the specialist told us, ‘I have no hope for usable sight for your girl. At most she will be able to discern between dark and light,” Janine recalls. “Yet she can see – with an eye that’s not supposed to see. She is a walking miracle. The ocularist [artificial- eye specialist] told us that what Emli has physiologically does not correspond to what she can do.”

In Emli’s case, her parents are still trying to establish how much vision she has, which can be difficult to do at her age. (In vision tests, you have to be able to cooperate and give precise answers about what you see.) So, before her parents make further decisions about her schooling, whether it will be at a mainstream or special- needs facility, Emli goes to a small local preschool a few days a week.

“When Emli was born, her brother was in his last year there, and so the teacher knew our family. She has been so accommodating,” explains Janine, an architect who works form home. “Emli knows the environment there, so she doesn’t struggle to get around. Puzzles can be a challenge though.”

HOW DOES A CHILD WITH LIMITED VISION LEARN TO RECOGNISE THINGS?

“Your eyes don’t actually ‘see’, your brain does. Your eyes send messages to the brain, which the brain must interpret. Emli can only recognise the picture or similar picture of a car, because her brain has learnt that that is the shape of a car.

“If I would show her a brand- new picture of a car from, say, the back or another angle, she’ll probably not recognise it. But she can do a line drawing of a car herself.” Emli’s distance vision is very poor. When she’s riding her bike, she follows the white line on the road, Emli has explained to her parents.

Out and about in town, Janine or one of the brothers will hold Emli’s hand to help keep her safe and tell her when there’s a step in her way. When she receives a plate of food, she needs to be shown what everything on the plate is, and when she gets a cup of water she needs to feel the water level with her hand to judge how full it is.

“When I cut my hair, she will feel it. When I cry or laugh, I keep my face close so she can feel,” says Janine. “She loves to dance, but I need to take her arms and legs and go through ballet moves to ‘feel’ them, she can’t see what I show her if I stand in front of her.”

And her clothes cupboard needs to be neat with all the clothing clearly differentiated, so that she can discern whether she’s holding a pair of shorts or a T- shirt, her mom says.

But surely the family struggles with hiking now?

Not a chance, says Janine. The Jordaan children have been hiking while carried by their parents in baby rucksacks since forever, and with Emli it’s no different – except that she often insists that she wants to walk too.

“She is determined and resilient,” says her proud mom.

“When you have a resilient child like Emli, who absolutely wants to do everything but physically can’t, you naturally have a lot of anger and frustration that you as a parent have to channel – and that can be emotionally draining.

“We have learnt to try and solve these situations with creativity and laughter, but obviously there are days that we fail terribly.”

Janine says Emli is very fond of music and listening to stories, and that she has an excellent auditory memory and an advanced vocabulary.

“She listened to her brother practising an Antjie Krog poem for a recital at school, and one day I just heard her sitting and reciting the poem. She had learnt it just by listening to him.”

WHAT ABOUT SCHOOL?

The options are homeschooling, mainstreaming either in the local government or a private school, or special- needs education. Emli may need a tutor to accompany her to school. The most noticeable difference will be that Emli will learn Braille as a writing and schooling language. Braille is also pleasant to read if you’re a book traditionalist and like to read paper, and not have a book read to you on Kindle in an automated voice. The South African Library for the Blind, based in Grahamstown, provides Braille books to its subscribers in all national languages.

Adds Janine: “Braille is also essential for mother- tongue education.

“Emli will learn in Afrikaans, and computer- aided technology is mainly available in English.”

She admits it’s difficult when people stare at Emli or make unkind comments.

“Her right eye has a cyst, so it looks like she has been stung by a bee, and her other eye is small. She does look different.

“When I fetch the boys from school, I have heard some older children say things like, ‘She looks like a zombie.’ That kind of thing must come from home – parents should surely teach their children that making personal comments is unkind, that you just don’t comment rudely on someone’s appearance.”

Emli wants to do everything, and believes she can do everything, her mom recounts. “One friend’s mother even commented she’s glad her daughter, who is quiet and shy, is friends with a fearless child like Emli.

“Still, it can be hard when Emli will talk about how we must be sure to mark her hockey sticks, one day when she’s in big school, with her name, so they won’t get lost. And you think… maybe she won’t play hockey…” Janine says.

Janine says she believes every person’s body is just their “tent”. Judge the heart and not the tent, she says, and you will be astounded. “Emli astounds people every day. In the beginning, people treated her as if she had a brain injury. But people who look a little different are just like everybody else. They’re also sometimes naughty and not always angels. And they just want to be treated like you and me.” WHAT IS BRAILLE?

A system of representing the alphabet using combinations of six dots printed on embossed paper to represent letters of the alphabet and words. It was developed by Louis Braille in 1824 and is still used today. It is read using the tips of the fingers. These days, Braille typewriters and printers and accessible software can convert text between Braille, audio and print, which makes mainstream learning much more attainable.

WE HAVE LEARNT TO TRY AND SOLVE THESE SITUATIONS WITH CREATIVITY AND LAUGHTER