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 USE THE RIGHT PUZZLES FOR YOUR HOME THERAPY NEEDS (PART 2)

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In our previous article, we talked about the benefits of puzzles and the types of puzzles to choose from. Now let’s be practical and talk about how to teach concepts with them!

HOW TO TEACH?

How do we teach a child how to solve a puzzle? We went through some speech therapists, occupational therapist, homeschooling and Montessori style articles and extracted some ideas. We’ll also be referencing back to the same article in  HubPages.

Non-connecting puzzles with just 2 – 4 pieces are good for kids at a developmental milestone or age of 0 to 24 months. The ones with big pegs are good for gripping for players with not so good fine motors skills, so the child can focus on the matching activity without getting too discouraged.

It is recommended to progress to puzzles with more pieces after they have mastered the smaller ones. When first working on bigger puzzles, present a few pieces at a time. Let them play with those pieces and figure out the pictures first before attempting to match.

For alphabet or number puzzles, it is also a chance to work on letter or number recognition and speech (sounds of consonants and vowels). Separate the pieces by rows and present them one row at a time.

Connecting puzzles  are more complex and can feel like a leap from their non- connecting counterparts. They require far more advanced perceptual skills. Most of them do not have reference pictures and therefore require the child to either work on memory or on logic, which they clearly have not fully developed yet. A tip that Rose Mary shared was to trace the pieces on the board or keep a notebook of pictures of the finished puzzles. Heidi Song suggests writing the numbers behind each piece and on the board itself. How simple and smart these suggestions are!

Interconnecting puzzles are typically jigsaw puzzles. If your child does not have the focus for a bigger puzzle or you do not have enough time, simply get your child to work on small sections of the puzzle at a time.

OT mom here has 2 methods of working with puzzles. One is to work on the borders first. The other is to group similar pieces together like what Rose Mary did here.

With jigsaw puzzles, you might have to spend a fair amount of time setting up. Make sure all puzzles pieces are faced up before starting the game with your child. This will help children with limited patience who may lose interest if parents take too long setting up. Another method is to involve them in the set up by getting them to help flip over the pieces that are facing down.

It is also useful to note that, before starting a puzzle, it is good to lay down some rules so that children can benefit from the session. For jigsaw, we should encourage children to take a good look at the completed puzzle before taking the puzzle apart. We should also remind the child to work on  one puzzle first before moving to the next to avoid distraction or getting  pieces mixed up.

 

WHAT ELSE TO THINK ABOUT?

A Special Purposed Life, a pediatric speech therapist blogger, walks us through what to think about when buying puzzles. Depending on their stage of development, one can choose puzzles based on the speech goals we want to achieve for them.

For instance, if your child is working on single words, use puzzles that have animals, vehicles, fruits and so on and work on words like animals sounds (‘moo’ for cows, ‘baa’ for sheep, ‘beep-beep’ for cars, etc). Every time they respond to the sound, be it mimic or mouth the word, reward them with the piece and guide them to put it in the right location. Other words they can learn are verbs and preposition such as ‘go’, ‘move’, ‘in’, ‘put’, etc. (We will, in future, include a list of sounds you can make for each type of object.)

If they are working on two words or more, you can say things like ‘I want dog’ or ‘I want the dog’, ‘Find the truck’, etc. You can even find puzzles to teach colours and sentence structure at the same time by saying ‘I want red bear’, ‘I want blue bear’, etc

Are they working on a particular consonant sound such as /b/, /p/? You can use alphabet puzzles to work on these sounds by applying the same technique as used for the animal puzzle. Or you can reuse the transportation puzzle, by presenting a boat for the /p/ sound. This was what we learnt at AVT: say /p-p-p/ and when the child responds, present the boat. Let the child play with it for a while and get him or her to place it in. If the child does not respond, present the boat anyway after the third articulation. If using the alphabet puzzle, do not attempt all letters at one sitting.

It is important to note that puzzles with sounds might not be recommended for training speech as it can be distracting and the human voice is after all better than mechanical sounds. However, for the purpose of occupational therapy, it can be something fun and more attractive to a child with ASD, for instance.

Additional tips: for families who are bilingual, allocate one language to one parent. Play the same puzzles in the same manner but with both languages at separate sessions. This introduces variety so the child can familiarise herself or himself with concepts without getting bored. Also, the consistency helps the child be effectively bilingual as he or she has a good learning model for both languages. At the same time, the other parent can take a break (play can be exhausting for adults too!)

 

Check out these other articles for even more ’puzzling’ tips:

 

Check out these videos too:

 

Do visit our site for more exciting products. Our vendors are not big warehouses, but therapists or specialists in the field and are experts in selecting and curating products carefully and meaningfully. We work hard to bring to you as many great products as we can source from around the world so you can make the best choices for yourself.

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Thank you.

Team Irisada

Preparing Heidi for Kindie Part II (If all else fails)

So in the last post Heidi’s mom gave some tips about getting your kid and yourself, as a parent, ready for kindergarten. And as much as we can plan and preempt, as Murphy would have it, things do not always go as planned. Sh*t happens! As expected, well not really as Heidi’s mom thought she had everything sorted out.

So what happened? Even though kindie was somewhat briefed about Heidi’s hearing condition and how to manage her devices, somehow a curveball got thrown their way and they messed up. Mommy had to rush off one morning for a meeting and Heidi had to choose that morning to throw a tantrum and grandma had to rush off for work. The same day, there was water play and Heidi needed her Aqua+ solution. Mommy briefed one of the teacher how to put it on and had to rush off. On hindsight, the teacher did look bit uncomfortable being tasked with this responsibility but didn’t protest verbally in any way.

That afternoon, one of the teachers called and said the device was blinking orange light. For those who do not know how a cochlear implant works, if the processor blinks green, it means they are working right and connected to the implant. If it blinks orange, it means something is wrong with the connection. Either the left and right side are switched, the battery is low or the connection is damaged. Mommy did a FaceTime with the teacher and still they couldn’t seem to troubleshoot. So she Uber-ed down right away only to find out that the teachers have damaged her processors. They plugged in the coil the wrong way! Both processors!

She called Heidi’s therapist right away and her lovely therapist immediately set up and audiology appointment for her. Lucky for them, there were spare new processors on hand and Heidi’s was under warranty. The alternate scenario would have been pretty distressing: forking out  $20k for both processors and potentially of a few days of bad signing and no hearing for Heidi. A slight problem was that they did not have Heidi’s latest CI mapping program on hand and had to use the old program which was not as updated and compatible for her hearing.

Lessons learnt if you are travelling to a new place or starting kindergarten:

  1. Always have your child’s CI audiology mapping ready in your email so that you can share it with the local audiologist.
  2. Have a contact of the therapist or audiologist or the agent dealing with the device and reach out to them as early as you can so that they are familiar with your child and are able to help them right away if any problem crops up.
  3. If there isn’t warranty for the device, make sure insurance covers most scenarios. Find out what the claims process is like to avoid any unnecessary delays.
  4. With regards to new teachers dealing with the devices, do not assume what seems obvious to you would be to them. Encourage them to ask questions and look out for non-verbal cues of the care-giver. If they do not seem comfortable, address their discomfort right away. Do not take any chances. We do not want our child to ‘lose’ their hearing due to mishandling from caregivers.

With that said, it wasn’t entirely the kindie’s fault. Many local kindies in Singapore are not organised in a way that ensures there are trained personnels to care for kids who need additional attention unlike the ones in Norway. Let’s hope to slowly change the preschool care with every unique child that comes their way. Hopefully, raising more awareness and bringing about a systemic change to the status quo.

Here is a checklist from Understood to prepare for

preschool:https://www.understood.org/en/school-learning/choosing-starting-school/finding-right-school/checklist-what-to-look-for-on-a-preschool-visit

Team Irisada

Preparing Heidi for Singapore Kindie

As we are one month into the Singtel Futuremakers incubation programme, activities and workload intensify. As busy as Tara, our founder, is, she’s got to get Heidi, her daughter, used to the life in Singapore for the next couple of months.

Despite the jetlaggedness (is that even a word?) of the kids, she drags herself and Heidi to a kindergarten that she found. Thank god for them, as many kindergartens are not ready to accept kids for short periods, or already have a long waiting list and long, we are talking about a year. And we thought Singapore has a low birth rate issue.

After the first bout of good luck, comes a reality check. The first problem she faced, kindergartens in Singapore are not as well prepared to care for kids with special needs. But thankfully, this kindergarten is willing to try. So after gaining some experience from Norway, where Heidi goes to school, and some help from Singapore therapists and advice from her Norwegian therapists, she’s compiled a short list of some tips to prepare your kid and yourself for kindergarten.

  1. Look for a smaller kindergarten so that teachers manage lesser kids and a dedicated teacher can pay more attention to your child.
  2. Rooms should have good sound proofing and floors should preferably be carpeted. If that’s not possible, suggest the kindergarten to put paddings on chairs to reduce the noise level.
  3. Conduct a session to educate teachers about the devices and the child’s condition. Better still, bring in a therapist before your child starts the kindergarten.
  4. For older kids, it would be great to conduct a learning session for the rest of the children about hearing loss and the devices. Present it in a positive and light-hearted tone.
  5. Bring in a therapist after a few weeks to conduct an observation.
  6. Always have her teachers’s mobile number and make sure they have yours.
  7. This list is not exhaustive but since we promised it would be short, one more thing we thought was useful is to create a poster so that teachers and other kids can read about hearing loss and the devices. We have attached the sample in this post for your reference. (psst, the daddy made it, so it isn’t all that professional looking. But nonetheless kudos to him and all copyrights are his.)

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We apologise if the image is not clear enough on wordpress. If you would like a copy, simply email Tara at tarateo@irisada.co. I’m sure she is more than willing to share the original copy.

Below is the chinese version, since most Singapore kindergartens are bilingual.

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