Everyday Strategies for Life with Diabetes

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, specialists and people with diabetes have to say about living with the condition.

This month we interviewed Laura, who has lived with diabetes for almost 15 years. Diagnosed as a teenager, she is now an accomplished professional. She reflected with us on how her condition has affected her life over the years.

“This Will Not Affect My Life”

Those were the first words she pronounced, after waking up from the coma induced by the onset of diabetes. “At the time, I mostly worried about catching up with the school work I’d missed out on during my hospitalisation,” says Laura, “and making sure my academic future wasn’t compromised.” She was a quick learner and easily understood how to adapt her food intakes and inject insulin. So it seemed that Laura’s life would indeed continue on her terms.

“Looking back, my parents had a very pragmatic approach to my illness.”  The fact that they let her be autonomous while at the same time reading up and becoming as knowledgeable as possible, empowered her to face the difficulties linked to her illness. “This helped cope with the anxiety of having to save my own life on a daily basis,” she says. They were just as good at keeping the right kinds of sugar lying around everywhere, as they were nudging her to make sure she had listed all the medical products she would be needing for an upcoming vacation.

Blood Glucose Meter Diabetic Finger Test Diabetes

Blood Glucose Meter Diabetic Finger Test Diabetes

At the same time, her parents helped her acknowledge that her condition meant she could now be considered handicapped. “I’m not sure I would have filed the paperwork to get an adapted schedule for my official exams,” says Laura, “because at the time I didn’t really want to admit that my diabetes could affect my stress levels, my memory or my concentration.” Transitioning from a “standard” person to a person with “special needs” was a gradual process.

“Don’t Compensate, Do Things Your Own Way”

Laura’s views on her illness have changed over the years. “I used to deal with my handicap by compensating to do things the same way as everyone else,” she says, “which is ultimately very tiring.” She would always want to finish every hike up to the top of the mountain, avoid adapting work hours to her sugar levels, and for the most part, her diabetes could go completely unnoticed.

Today, she has started to see things differently. She no longer wants to focus on the negatives – like the annoying checklists when packing for faraway travel destinations -, or the ideal achievements she should aim for – like the top of that mountain. “I’ve learnt to let go and accept that I’m already achieving so much, that I can derive satisfaction and pride without aiming for impossible goals.”

With this in mind, she sets up her own lifehacks or daily strategies. For example, when it comes to going to the gym, she has adapted her expectations. “After working out, my glucose levels can slump, despite my best efforts to maintain them, which in turn wears me out and induces a lot of stress.” So Laura stopped going at lunchtimes – to keep her afternoons at work productive – or the evening before important morning meetings. “And now I accept that sometimes, simple physical activities wear me out, and that’s fine, even if it’s non-gym related!”

“Education, Communication, Self Acceptance”

Laura has always explained her illness to her friends and colleagues. “Education is key, from the very beginning,” she says. For example, a diabetic child’s teachers and carers need to know what to do in case of an emergency. What’s more, there can be misplaced stigma and judgement around this illness, which can damage a child’s self-esteem.

A child with diabetes. Picture from www.nhs.uk

A child with diabetes. Picture from www.nhs.uk

However, what she didn’t use to speak up about easily, was her physical limits. Of course, people knew that she had to monitor her sugar levels during physically challenging activities. “Now I’ll ask how long I’ll be walking during a seemingly benign excursion around town or to a museum,” she says, “because, to me, it will make a difference if I walk 30 minutes or 3 hours today.” Being more open – and ready to accept these differences – gives her more leeway to adapt her strategies and reach her goals.

Nowadays, using the word “handicap” is important for me,” she says. This hasn’t always been the case, and she’s grateful that her family, friends and colleagues adjust to her shifting identity as a person with special needs. “My feelings about this part of my identity will probably continue to evolve – and that’s fine.

Final Words and Tips
  1. Being able to pitch the illness in relatable terms is very important. “What I’ve learnt, is that people need to know why I’m telling them about my diabetes“, says Laura. “So I try to use engaging language and explain the person’s role.” For example, teachers might need to be able to spot warning signs, employees might need to know you cannot come in earlier than a certain time, etc.
  2. “I’ve often felt guilty when my reading showed my insulin levels were off track,” she notes, “but really, it’s not a mark or a grade.
  3. Tetraderm plasters changed her life (Laura has medical pumps attached to her body 24/7).
  4. When travelling: Laura uses Frio products to keep her meds cool and special boxes to keep used needles. You can check out some cooling bags on Irisada’s site here.

 

Book Review – Elmer by David McKee

ELMER

Author: David McKee

Illustrator: David McKee

 

Publisher: Andersen Press

Age Recommendation: 0 – 5

 236 x 270 x 4mm | 140g

 Paperback | 32 pages

Picture of children book Elmer

Soft cover children’s book with a colourful patchwork background and a patchwork elephant. Title Emler author David McKee. 

Elmer is not your regular elephant. He is patchwork and he is funny. But sometimes being different can be tiring but that’s what his friends love him for.

Picture of a page from Elmer children's book

Three elephants in the rain, the middle one is half patchwork as the rain is washing off the grey colour to show it’s real colours. Text says,”As they laughed, the rain cloud burst and when the rain fell on Elmer, his patchwork started to show again. The elephants still laughed as Elmer was washed back to normal. “Oh Elmer,” gasped an old elephant. “You’ve played some good jokes, but this has been the…”

Elmer disguises as himself in elephant colour and made all the elephants laughed when they found out it was him. From that day on, they celebrated Elmer Day every year where all the other elephants dressed up and Elmer dressed up in elephant colour.

A book that celebrates diversity in a fun way. And somehow, the seriousness of elephants are ironically funny. And kids love them.

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?

homer_british_museum

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.

stevie-wonder

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.

olympicteamtrialstrackfieldday6ix3yi4pvblsx

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.