Diagnosing Sight Loss in Children and Adapting

This series is designed to help parents manage specific aspects of bringing up a child with a different learning path. We’ll be looking at what parents and specialists have to say about raising children who are blind or have sight loss. 

This month we interviewed Lea Lay Hong, Vision Teacher at the IC2 Prephouse of Singapore, who specialises in assisting those with sight deficiencies in learning how to adapt. She is also the mother of two children with visual impairments. The elder now studies in a polytechnic school and the youngest is still in a mainstream high school. Both are national para-swimmers!

Step 1 – Red Flags and Diagnosis

We asked Lay Hong what telltale signs could alert parents as early on as possible. Some symptoms seem more obvious than others: if your child is bringing things close up to their faces to look at them or shows signs of ocular discomfort (like rubbing their eyes excessively), a trip to the eye doctor could be in order.  She advises also to consider the child’s eye movements (are they jerky?) and whether the child is directing their gaze at people and objects.  Does he seem interested to look at people speaking to them? Does she startle easily when you pick him up, does she seem surprised when someone starts speaking near her?

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Homer, the celebrated, blind poet of Greece

All these signs may not specifically mean that your child is blind, but they can help initiate the right discussions with your doctor. Then, and only then, can you start testing your child’s eyesight to discover if there is a problem. It’s important to remember that “a definitive diagnosis is not possible at the first or initial visit”. In fact, Lay Hong explains that “many conditions are progressive so a diagnosis may not be possible until some years later

 

As the medical investigation continues, parents and caregivers need to move on to finding ways to help the child continue to learn. As says Lay Hong, “What is important is not so much the diagnosis per se, but knowing what your child can or cannot see, and how to ensure they are still able to learn like their peers.

Step 2 – Finding Support and Becoming Empowered

As with many conditions, most parents go through a grieving phase when they find out their child will have a different life path than expected. Moreover, “because visual impairment is a very low incident disability, chances are [the affected parents] do not know of anyone else going through the same ordeal as they are.” Thus Lay Hong stresses that parents should find support networks as soon as possible. There they will get emotional support – or counselling when needed – as well as knowledge and insight regarding their child’s education process.

“Remembering that the child learns differently, and knowing what adaptations or modifications are needed to enable the child to learn is important,” says Lay Hong.  There is no “one-stop” solution, but there will be a combination of adaptations that will give your child the tools to reach their full potential. Moreover, Lay Hong is optimistic and ambitious for kids with sight loss. She states that they don’t usually have slower learning curves than other children if concepts are presented to them in accessible ways, i.e. tactile methods.

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Stevie Wonder was a child prodigy and musical genius, blind since shortly after birth.

For completely blind children, however, the learning curve might be different as “their acquisition of information is linear, moving from one to the other. It is difficult for them, especially at a very young age, to understand complex relationships between objects, ideas, etc.” In this regard, common difficulties may include using concepts like “otherness” and “permanence”. In the first case, blind children sometimes have trouble with the use of pronouns – I, you, me, them – and in the second, they may cling to objects and people, fearing that once they let go, they will disappear.

Step 3 – Fun, Games and Everyday Life

A recurring theme in bringing up kids with sight loss is how to ensure they are included in games and activities with their peers. Parents sometimes worry that they will be left out, or games are difficult to adapt. Yet, according to Lay Hong, certain simple good practices can go a long way to helping them interact.

They should be included in all family activities, mealtimes, outings, shopping, etc, as much as possible,” she says. Other tips can be easy to implement even outside family circles. For example “conversations directed at them should begin with their names, so they know they are being spoken to.” And when in group situations, telling them how many people are in the room (as well as their names) and encouraging them to call out to those in the room to organise activities or games, helps them become more autonomous.

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Marla Runyan, legally blind, competed and won in both para and able-bodied competitions

According to Lay Hong, any game can be adapted. Want to play football? What about using a ball with bells inside (and possibly smaller teams) so that everyone can find the ball? Cards with Braille or other tactile methods mean they can be part of fun games. Lay Hong notes that visually impaired kids are frequently left out of games because the rules aren’t explained in an accessible way, or others simply assume they cannot play.

Final Words – Always Assume the Impossible is Possible

Lay Hong encourages parents to never take no for an answer. “Do not accept when people tell you your child can’t do something because he can’t see,” she says. “Find out, if there are different ways to go around doing the same thing.” Sometimes you will have to advocate and be strong to make sure your child has access to quality learning. So read up and stay up to date.

And most importantly, remember that you know your child best, and are his or her best ally. You will be constantly explaining how your child is unique, so find simple ways of getting the right message across. For example, “instead of saying “My child has constricted field of vision due to retinitis pigmentosa”, you may simply say “my child has difficulty seeing things around him, and may need some help when moving around, especially going down the stairs, or if there are obstacles around him”.”

Additional Links

Some additional links for parents looking for more information. 

How to Keep Hearing Devices on Kids

This series is designed to help parents manage specific aspects of bringing up a child with a different learning path. We’ll be looking at what parents and specialists have to say on raising children who are deaf or are hard-of-hearing. The previous articles in this series can be found here (on diagnosis) and here (on playing sports).

Finding Helpful Solutions to Keep those Devices on Kids

Today’s area of focus is the logistics around hearing devices. Some of the ideas and products listed below are available on our platform, all have been tried and tested in the community. Reach out and comment if you have more to add.

Solution 1 – Babies: Scarves and Headbands

The first difficulty parents of kids with hearing devices run into, is the size and bulkiness of the aids compared with their bambino‘s head. For very young babies, this can be an issue during breastfeeding especially. As hearing aids can make very loud noises when they are shifted, some parents decide to avoid any discomfort for their child and remove the aids completely at feeding times. Another option can be to use baby sized scarves on their heads to prevent rubbing against the devices, such as these baby buffs.

As children grow, the very delicate and expensive pieces of equipment continue to sit awkwardly on a toddler. In many instances they are prone to flapping or even falling. Hence many parents’ nightmares about their kids losing them in sand pits or the neighbour’s garden. One solution that seems to work well is headbands, especially for babies and girls. Ai Sin Soh, mother to a profoundly deaf little girl, started making her own headbands.

Lynne's Collection

As you can see, not only are they snazzy and pretty, they perfectly hold the hearing devices into place. There are also options out there for all tastes and styles – yes even kids who hate bright and delicate apparel. A recurring comment we hear from parents is that the right kind of headband makes it easier for kids to accept their hearing devices, as they are less physically annoying and even cool.

Several of Ai Sin’s headbands are on sale on Irisada, including models with flowers and others without, glitter elastic versions as well as safety clips. We also have a second vendor called It’s raining bows and if none of our selection works for you, check out Etsy or other vendors like Hearing Aid Headbands (UK).

Solution 2 – Ear Gear, Protection for All Hearing Instruments

Mark Rosal founded Ear Gear in 2005, after many frustrating attempts to keep his little girl’s hearing aids in place. He designed sleeves that could protect hearing instruments from sweat, dirt, moisture, loss and wind noise, as well as protect the wearer from chafing and discomfort often associated with aids.

Interestingly, Mark says “the most popular choice of color has stayed consistent with beige which matches many skin tones. For people who want to conceal their hearing aid, beige is the best choice.” However, never fear, fashionistas, as he adds “for those wanting to make a fashion statement, we’ve got bright, fun colors and custom options to mix and match cords, clips, sleeves and more.”

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Ear Gear donates products to many groups around the world, like camps, hearing loss awareness walks or charities. Mark encourages organisations to get in touch at info@gearforears.com. His parting words were for parents: “it’s imperative that parents are persistent when keeping the hearing aids on the child. Hearing is an integral part of a child’s development and taking the hearing instruments off or losing them for extended periods of time can directly affect the success of your child.”

Ear Gear is available on Irisada.

Solution 3 – Time for a Swim

As mentioned in a previous post, there have been quite a few deaf olympic swimmers. Deaf and hard of hearing kids and adults can now swim more easily thanks to ListenLid. This short video perfectly sums up how ListenLid make pools more fun for their wearers (turn the sound up).

Alana Triscott designed ListenLid so her son would “enjoy his swimming school lessons and be able to blend in.” She recalls that “there were a few options, but they were either pretty unusual, blocked the acoustics or involved the device being housed in a shirt.” ListenLid is the exact opposite. As you can see below, the swim caps look pretty much the same as regular swimming caps. What’s more, Alana’s son even uses these caps under helmets when he goes skateboarding or biking.

Photo taken from the ListenLid look book on Facebook.

Photo taken from the ListenLid look book on Facebook.

These caps are to be used for the following devices: iPod®; MP3; Advanced Bionics® Neptune® cochlear implant (up to two devices can be accommodated) and the Naída cochlear implant with AquaCase® (one AquaCase® can be accommodated). ListenLid is also available on Irisada.

Parting Words

Irisada is always on the lookout for other products that could help parents, kids and adults lead their lives to the fullest, no matter their abilities Regarding deaf and hard of hearing needs, we also have batteries and Dry Briks, as well as a selection of toys and games. If you have suggestions, we’d love to hear them and see if we can add them to our inventory!

Additional Links

Some additional links for parents looking for more information. 

  • For more tips on head gear, check out this post on BC Hands and Voice.
  • Recently, books featuring deaf or hard of hearing kids, some with implants, have started coming out. Liam the Superhero is available on Irisada, and explains how cochlear implants works in fun rhyming ways. You may remember Bianca from previous posts, she co-authored Benjamin’s Girl, a four book series about the life of a little deaf girl through the eyes of her teddy bear. To find out more, contact her directly.