To my children, from your mother with Ehlers Danlos Syndrome

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mother and two children at eilean donan castle in scotland

Dear kids,

My favourite part of every day happens long after you’ve fallen asleep. I quietly slip into your rooms and watch you doze. A smile creeps over my face as I catch sight of your legs dangling over the edge, your arms clutched tightly around a stuffed toy. I don’t pick you up and rock you back and forth as I would like. Sadly, my elbows won’t allow me to do that (and you’d think it was totally creepy). Instead, I slowly bend down (if my body will let me) and place a soft kiss on your warm, smooth cheeks. Some nights, when my back won’t allow me to bend, I kiss my hand and press it lightly to your cheek. When I struggle to walk, I hobble as close as I can on my crutches and blow my kiss in the air, hoping it doesn’t miss its mark along the journey.

As you both know, I suffer from hypermobile Ehlers Danlos Syndrome (hEDS). This is an invisible illness, which means I look okay from the outside, but inside my body is screaming in pain. My joints are dislocating or subluxing (partially dislocating) and my tendons are tearing for no apparent reason. I can’t remember the last time I slept through the night.

People who pass me on the street would never know anything was wrong. If they saw me using my crutches or wearing one of my many braces (wrist, ankle, elbow or knee), they might think I hurt myself playing sports. They’d never guess that my body hurts in a way they couldn’t even imagine. When I tell them I can’t eat gluten, dairy or garlic, they look at me like I’m a high-maintenance snob jumping on the trendy-eating band wagon. They could never dream of the after-effects I suffer from ingesting these ingredients. When I say I have to sit down (because I feel like I’m going to be sick or faint from standing for too long) they roll their eyes in disbelief. I suffer from POTS (Postural Orthostatic Tachychardia Syndrome) as well, which means my blood pressure is super low and jumps by 34 beats as soon as I stand up, hence the dizziness.

I know it’s not easy for you – having a mom who can’t always play. I know there are days you begrudge the fact that you have to do extra chores around the house (like lifting the groceries, laundry basket and garbage). I know you hate taking the school bus when I’m unable to drive. Trust me, I hate these things, too; maybe even more than you do.

I hate having to opt out of backyard fun, balloon volleyball in the basement and board games at the table. I watch you ride off on bikes with your father and my heart literally aches with a longing to join in. What I hate even more than being a bystander, though, is the look I see in your eyes when I, once again, have to say “not today.” I see disappointment cloud your face even though you’ve tried so hard to hide it. I see hurt in your eyes as the twinkle quickly disappears. I’ve lost track of the number of times you’ve asked: “When will your arms get better? When will your hip stop hurting? When will your back stop being sore? Will THIS surgery finally make things okay so you can FINALLY play baseball with me?” You’re so brave when I answer as I always do, “I’m not sure, but hopefully soon.”

In my mind, my body can do everything we all want it to. It can run for miles, swim front crawl, throw a baseball and chase you during a game of tag. In my mind, my elbows allow me to brush your hair, pour the milk into your cereal and pick you up for a piggy back. In my mind I can always say, “Yes, let’s go play.”

In reality, most of these things are beyond my ability right now, but that doesn’t mean I won’t have good days where I can kick a soccer ball back and forth. It doesn’t mean I won’t push myself on the medium days to throw a baseball towards your glove, even if I have to pay for it with pain later. As for the bad days, of which there have been too many lately, I need you to remember that I love you more than you think possible. I may not be able to play tag on those days, but I can cheer you on enthusiastically from the sidelines. And no matter what type of day it is: good, medium or bad, I will always find a way to give you a goodnight kiss.

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It took me 26 years to get diagnosed with Ehlers Danlos Syndrome

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woman using walking devices and standing in front of large building

In the early days of our relationship, my then boyfriend (now husband of 14 years) would laugh when I stumbled during our walks. He assumed I did it to get closer to him. “You’re such a klutz,” he’d tease. As the stumbles became worse, his laughter turned to concern. We’d be out for a walk when my ankle would suddenly invert, the bone hitting the ground before the rest of me followed. Sometimes I could catch myself before the inevitable fall. Other times I’d hit the ground. Hard.

I have struggled with chronic pain, subluxations (partial dislocations) and dislocations since early childhood. I can clasp my hands together and skip using my arms as a rope. My shoulders move around so much they cause tears in my rotator cuffs. My right hip is similar, causing tears in my sacrum. My elbows are so painful that I can’t use my arms to lift the bed sheets off my body. You’ll often find me using a variety of aids – from wrist, elbow, knee and ankle braces to a sling, crutches or a cane to help me stay stable.

When I turned 20, new symptoms cropped up. Sometimes my heart races for no reason, leaving me breathless. I feel nauseous, sweaty and dizzy when I stand up from sitting or if I stand still for more than two minutes. I become bloated after eating even the tiniest of meals and consuming certain foods will cause me to vomit, have diarrhea and get horrible abdominal pains.

Sound like the musings of a hypochondriac? You’re not alone if you think that. Every doctor I saw for 26 years dismissed my complaints with phrases such as: “You look fine,” “You’re just a bit clumsy,” “Your x-rays are clear,” “your EKG is great” or “You have a touch of IBS. It’s nothing to worry about.”

I knew they were wrong, but didn’t know how to prove it.

Finally, a Diagnosis

My frustration continued until I was 27 and met a GP in Toronto who was able to finally fit the pieces of my medical puzzle together. After taking an extensive history and performing multiple tests (including asking me to place my hands flat on the floor while bending over with straight knees and pull my thumb back to touch my wrist) he diagnosed me with the hypermobile form of Ehlers-Danlos syndrome, also known as hEDS.

EDS is a group of multi-systemic genetic disorders that affect connective tissues (collagen, in particular). Like glue, these tissues provide strength and support to our skin, bones, digestive system, blood vessels and other organs. They also support the tissues (i.e. ligaments, cartilage and tendons) in and around our joints.

What Are the Symptoms?

Each affected person suffers with hEDS in a different way, but the following symptoms are common for many:

-Dislocations
-Subluxations
-Smooth, stretchy skin
-Chronic pain
-Chronic fatigue
-Gastrointestinal disorders
-Rupture of large arteries (this can occur in hEDS patients, but is more
prominent in the vascular form of EDS)
-Immune system complications
-Gynecological issues
-Autonomic dysfunction such as postural orthostatic tachycardia syndrome (POTS), which causes low blood pressure, increased heart rate, dizziness and fainting episodes

Who Gets It?

According to the Hypermobility Syndromes Association, hEDS is inherited and affects one in about 5,000 people worldwide. In a recent paper published in the American Journal of Medical Genetics, researchers claim, “EDS is likely the most common systemic inherited connective tissue disorder in humans.” They say hEDS affects 255 million people worldwide, 10 million of whom live in the US. That’s a huge number of people affected by a disorder the medical community knows little about.

How Is It Treated?

There is no cure for any of the Ehlers-Danlos syndromes. Since hEDS affects so many parts of the body, each symptom must be treated separately. Physiotherapy is important to strengthen muscles around the joints to reduce the risk of dislocations. I do special exercises daily and attend in-clinic sessions numerous times a month. In some cases, surgery is also advisable to repair (and possibly tighten) damaged joints. I’ve had four surgeries so far (one on each shoulder, my right ankle and my right elbow) with another to my left elbow on the horizon.

Altering your nutrition regimen can be beneficial for those with
gastrointestinal complaints and can help reduce joint pain and inflammation. I eat a special diet (high in salt and water (for POTS) with no wheat, garlic, dairy or leeks and little sugar) to help reduce inflammation and keep my stomach issues at bay.

Pain medications can also be useful, but it’s important to see a medical
professional to find out which meds work best for you. I’ve tried a ton (including celebrex, pregablin, diclofenac, hydrocodone, tramadol and lidocaine patches). None seem to work for me, but that doesn’t mean they won’t for others.

How Is EDS Diagnosed?

This past March, an international consortium of more than 90 EDS experts published new diagnostic criteria (for the first time in 20 years) along with management and care guidelines in the American Journal of Medical Genetics. Diagnosis includes measuring the hypermobility of multiple joints based on the Beighton Score, discovering an immediate family history of the disorder and finding widespread symptoms throughout the body, among other qualifications. Hopefully this new criteria and increased awareness will help prevent others from struggling for decades without answers.

Despite being told for years by doctors, friends and family members that my symptoms were nothing to worry about, I knew something was
seriously wrong with my body. Like so many others who have EDS, I felt frustrated, unheard and often depressed by my condition. Finally getting a diagnosis helped me to heal emotionally and allowed me to gain more knowledge about this disease so I could better manage my numerous symptoms.

As many who struggle with EDS will tell you, the worst part of living with an invisible illness isn’t the chronic pain, dislocations or exhaustion; it’s being made to feel as if your complaints are unfounded. If you think something’s wrong with your body, you’re most likely right. Believe in yourself and never stop searching for answers.

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The moment I decided to stop hiding my braces, slings and crutches in photographs

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My sling, in full-view, during the moon rise at the beach.

It was a perfect night at the beach. The warm breeze tickled my face as I watched my two children chase each other towards the rock pier. My husband’s hand felt strong in mine as we walked through the soft sand. The moon rose slowly above the water, reflecting the sun’s rays as it sank behind us to welcome the night.

“Let me take a picture of you,” my husband said as he climbed into the lifeguard’s long-abandoned chair. Our daughter ran up and put her arm around me for the shot, nestling her head on my shoulder. “Don’t you want to take off your sling?” my husband asked before pushing the shutter.

Four weeks before this moment I had my second elbow surgery in four months and am still wearing a compression sleeve and sling while I recover. As someone wiith hypermobile Ehlers-Danlos syndrome (hEDS), wearing aids is not new for me. I often have a brace of some kind either on my body or tucked into my purse for emergency moments. Crutches and a cane live in an easily accessible closet in my bedroom.

While they may be a part of my regular life, I’ve always felt embarrassed about their existence. I hate the stares I’m given from passers-by and the unprompted questions I receive about my health from strangers. I hate drawing attention to myself in public and wearing a health aid makes hiding in the shadows impossible. Funny, since most of the time I feel invisible when struggling through the pain, nausea, dizziness and exhaustion that come along with my condition.

In my mind, I don’t need braces or crutches or slings. Although I live in constant pain and have frequent injuries and dislocations, I try to visualize myself without these aids in an attempt to feel more “normal.” When it comes time for someone to immortalize a moment, such as the beautiful moon rise that night on the beach, I quickly remove a brace before a photo is taken, hide my crutches or ask someone to take the picture waist-up to hide any tell-tale signs of an aid on my knee or ankle. I want my kids to look back on these photos and remember the moment and the place, not my illness.

During the six years I was lucky enough to live in London, we traveled extensively with our family, trying to make the most of our time overseas. We took photos everywhere – “from Bali to the Seychelles. Knowing we may never return to these incredible spots, I wanted to make sure we preserve them in photographs. In York, I hid my crutches behind stone walls. In Spain, I wore an air cast on my ankle, prompting photos to be taken from the waist-up. In the Seychelles I stood behind volcanic rocks to hide an ankle brace. In Italy, I hid my wrist braces under a coat.

family sitting on a big rock on a beach

When I look back at these albums now, I find stray photos that were taken before I had a chance to hide my aids, or I can see a crutch poking out from behind a kid who was purposely placed in front of me to hide it. It’s a bit like trying to find Waldo when searching through these memories. When I catch sight of a rogue cane, I remember the dislocation, subluxation or fall that led to the use of that aid. That is what I remember first. The beautiful Portuguese church behind it comes next; hence my desire to send my crutches into obscurity.

The other night, when my husband prompted me to remove my sling, he was doing something I had trained him to do – altering our memory to one that was more “perfect.” We all do it. Spend a few seconds on Facebook and you’ll see what I mean. It’s swamped with photos of happy, smiling families. Chances are, just before those shots were taken, one of the kids was whining, talking back or pummeling his sibling. The adult had likely downed a glass of Pinot to try to calm her nerves. Once those photos are posted, however, all we see is perfection.

As I looked at my husband, my iPhone gripped in his two strong hands, I realized I was sick of pretending to be perfect. I was tired of the effort it took to hide my aids. The weight of my daughter’s arm resting across my back reminded me that she, too, has hEDS, as does her brother. My habit of secreting away my aids might have taught my children to be ashamed of using the braces, crutches and slings they may need when they’re older. Instead of being reluctant to show off my aids, I need to be grateful that they exist; for without them there are days I would likely be stuck in bed, unable to walk far enough to see Big Ben, the Eiffel Tower or my son’s little league baseball game.

With that in mind, I readjusted my sling, pulled my daughter in closer, smiled and said, “Nah, I’m going to leave it on.”

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A parent reflects on coping with her child’s rare tissue condition

My daughter, Marley, can’t sit still. Whether she’s bored during math class, enticed by a movie or reading a book, my ten-year-old is constantly moving. Knees up, knees down, feet tapping, legs swinging, bum bouncing, knees jiggling.

One day, after scolding her for twitching non-stop during a play, Marley burst into tears. “I can’t help it!” she sobbed. Heart-broken that I had lost my temper over something she couldn’t control, I decided it was time to seek help.

I took Marley to see Professor Patricia Woo, a pediatric rheumatologist at the Great Ormond Street Hospital for Children in London, England, where we currently live. After a few tests, Dr. Woo diagnosed Marley with a genetic connective tissue disorder called Ehlers Danlos Syndrome (EDS). Marley’s body is unable to produce normal tissues such as collagen, which are essential for supporting her skin, bones, blood vessels and other organs. As a result, her joints are extremely mobile and she can do the splits, kiss her elbows and wrap her legs behind her head. But this flexibility can also cause tears in surrounding muscles, constant pain and frequent dislocations.

That was my a-ha moment. I have EDS, too. When I was pregnant with Marley, a geneticist at Toronto’s Mount Sinai Hospital told me that my kids had a 50 percent chance of inheriting the condition. Marley had to be delivered via C-section a month early due to complications and we worried about her hips, which rotated outwards due to her breach position. But an ultrasound showed them to be normal. I was lulled into a false sense of security and forgot about my early symptoms.

Then at age four, Marley began to cry at night, grasping her legs, saying they hurt. She was twisting her ankle while doing simple things like climbing stairs. Once, her ankle was put in a cast for six weeks to let a bad sprain heal. Now, she hurts her ankle almost every week. I wince each time she runs down the stairs.

According to Dr. Woo, Marley can’t sit still because her body has difficulty figuring out where it is in space. For her, a hyperextended joint feels normal. As a result, she’s constantly trying to find a position that makes her feel stable and therefore pain-free. Because she doesn’t have enough muscles built up to help stabilize her joints, she finds it almost impossible to get comfortable and struggles to hold a pencil correctly.

Luckily, the staff at Marley’s school have been amazing at supporting her since the diagnosis. Marley’s teacher has devised ways to allow her to get up and move about the class, handing out books or collecting papers. She’s allowed to type half of her written homework and she sees an occupational therapist once a week to help strengthen her hands, improve her pencil grip and learn to reduce her penchant for wriggling.

At home, we do physiotherapy exercises as a family (my eight-year old son also has EDS). We race each other doing the crab walk, tip-toe around the living room and do calf raises in the kitchen. We swim every weekend to help strengthen our muscles without strain.

While there’s no cure for EDS, knowledge and strength-building are half the battle. There’s no need for pain killers as long as we can keep Marley’s muscles strong and teach her to be careful of things like walking on uneven pavement. While she’s not sitting still in her chair quite yet, I’m sure she’ll get there soon. In the meantime, she’s enjoying her status as queen of the splits amongst her friends.

 

Shandley McMurray is a Canadian freelance writer living in London, UK. She feels lucky to live in a city where there are so many Ehlers Danlos specialists to help her family.

Originally published in ParentsCanada magazine, July/August 2015.

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An Open Letter to the Kids Bullying my Daughter

An open letter to the kids bullying my daughter

 

Shandley McMurray shares the heartbreaking impact of bullying on her nine-year-old daughter.

Dear kids who’ve been bullying my daughter,

She can be annoying. I know. I’m her mother. She doesn’t like to take no for an answer, voices her opinions loudly and likes to bend the rules in her favour at any chance. She’s likely to tell you her life story—whether you want to hear it or not. She wears outrageous clothes that don’t match, gets excited about small things (like playing outside at recess) and sings whenever possible. She wants so much to be your friend that she sometimes enters your personal space, begs to be allowed to join in a game and laughs too loudly to hide her disappointment when you—once again—say “no.” These things bug you. I get it.

To you, the fact that she screams with delight as the bell rings for lunch is a quirk that makes her different. To you, the fact that she will tell you about her latest crush is annoying; you would only tell your very best friend. To you, the fact that she cries in the corner when her feelings are hurt is yet one more thing she does to “get attention.” You smirk at her tears and run away, moving on to play a game of tag that you’ll never ask her to join.

I can guarantee, if the tables were turned and it was you crying in the corner, my daughter would be the first one there, holding your hand and asking what she can do to help, even though you called her “weird” the day before. If you fell down, she’d rush you to the nurse’s office, even though you purposely stomped on her foot in the hallway that morning. That’s because she has the kindest heart of any child I’ve ever met. She’s enthusiastic and joyful. She’s able to see the spark of bliss in small, everyday things and she’s not afraid to show her enthusiasm. Once you smile at her, she’ll likely consider you a friend for life. To me, these things make her awesome.

When you made that bar chart in computer class titled, “Who hates [my kid],” you thought it was funny, didn’t you? You and your friends had a good laugh over making the “hate” bar go higher and higher while the “like” bar remained a mere slit at the bottom. You probably didn’t even notice when my daughter’s eyes first registered what you’d done. You certainly didn’t feel the immediate stab of pain that pierced her heart, the lump that jumped into her throat, threatening to choke her. She was devastated, but she wouldn’t let you see that. She’s too brave.

Remember that time you bribed her with a pen? It was a sunny day and she was heading out to the playground to run around. You intercepted her on the stairs and said, “If you promise to play somewhere else today and leave us alone, I’ll give you a fountain pen.” My daughter’s always wanted a fountain pen, especially a white one like the one you promised to bring her the next day, so she agreed. In fact, she arrived home that night all smiles about her imminent reward. What she hadn’t realized was that you were doing two things: paying her to go away, and making a promise you never intended to keep. My daughter learned a hard lesson that day, one that I hope she’ll never forget, and one I hope that you won’t have to learn in such a painful way—never sell yourself short. Stand up for yourself.

Last year, my daughter sat at our kitchen table, painstakingly making Valentine’s cards for every single one of you. She spent an hour working with scissors, markers and glitter glue. Armed with her treasured creations, she left home with a bounce in her step. When she handed you your card, you looked at it. You snickered. Then you crumpled it up and practiced your free throw into the garbage can. High-fiving your buddy over your perfect shot, you didn’t see the pain that rippled through my child’s tiny frame. For reasons I will never understand, my daughter likes you despite the number of times you’ve crushed her spirit. Giving you a card was an opportunity for her to forgive you for the mean things you’ve said and done. She wanted to fill your proverbial bucket, to commit an act of kindness that would help you feel better about yourself. Instead, you rejected this kindness, emptying my daughter’s bucket and causing a hurt so deep that she decided to never again send another Valentine—sadly, something she stuck to this year.

My daughter doesn’t ask for much. She just wants to play with you, maybe sit with you at lunch or be chosen as someone’s partner in science class. She wants to be forgiven, as we all do, for any mistakes she makes. She wants to be accepted for who she is and liked for her many amazing attributes. She wants you to stop stepping on her toes, bribing her to go away and saying hurtful things. She knows you think she’s weird because you’ve told her. She knows you don’t like her because you’ve told her. She knows you think she’s annoying because you’ve told her. That’s why she’s trying so hard to quiet down and back off. Before she enters the school gate each morning, my daughter quietly tells herself, “If you fit in, they’ll be nice. Just act normal.”

Let me tell you something: She is better than normal. And it breaks my heart in a way I never thought possible that, because of your cruelty, my exuberant daughter is trying to squash her personality to make you like her. I am the one who’s supposed to protect her from people like you, but I can’t because I’m not there.

How about we play a new game? It’s called “Give my kid a break.” It’s easy to play. All you have to do is put yourself in my daughter’s shoes. First, try to imagine feeling fearful every time you step outside for recess. Your body tenses as the boys run by, wondering if they’ll call you “ugly” or “dumb.” You worry that they’ll push you when the teachers aren’t looking. Then you spot the girls, gathered arm in arm in their cliques, laughing as they brag to you about yet another birthday party you weren’t invited to. You look for a friendly face to help soften the blow, but everyone avoids your eye or worse, whispers and points. How does that feel?

Now imagine, just once, being invited to join the fun everyone else is having, to be accepted as you are and to laugh freely along with the other kids without fear of being mocked or hurt. It’s so little to expect, really, but to my daughter, it would be life-changing.

I wish you would open your heart to her even for your own sake—to let yourself enjoy the fun that can come from being silly and joyful along with her. Maybe then you’ll be able to appreciate—even like—the awesome little girl who’s been standing in front of you all along. And maybe, just maybe, you’ll ask her to join your group for a game of tag. I’m certain you’ll be happy you did.

Shandley McMurray is a freelance writer, blogger and mother of two who currently lives in Connecticut. Read more of her posts and articles at www.shandleymcmurray.com and follow her on Twitter @shandleysue.

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When Love Hurts: The truth about dating violence

Teen dating violence is more prominent than you may think. Here’s why you should talk to your child about it today.

JENNIFER ANNE CRECENTE was the kind of teenager parents dream of. An energetic honour roll student, Jennifer volunteered at a hospital in Austin, Texas and was a fan of the arts. She even acted alongside her father, Drew Crecente, in two musicals at their local arts centre. A loving and open girl, Jennifer was extremely close with her family, often turning to her parents for advice on everything from schoolwork to drugs and even sex.

When she began dating a boy named Justin, everything seemed fine. Soon, however, she began to notice that he seemed
troubled. When Justin dropped out of school and was sent to a camp for young offenders, Jennifer told him that she didn’t want to be his girlfriend anymore. A few months later, Justin shot and killed her in a field near her home. Jennifer was 18.

According to The National Center for Injury Prevention and Control, 21 per cent of high school-aged girls and 10 per cent of
boys who date have experienced physical and/or sexual violence at the hands of their partner. Unfortunately for Jennifer, this violence ended her life.

Crushed by the horrific loss of his only child, Jennifer’s father devoted his time to researching teen dating violence (TDV). He started Jennifer Ann’s Group (jenniferann.org), to promote awareness of this growing trend and provide help for other parents and teenagers. He didn’t want others to suffer the way Jennifer had.

“I decided I needed to start an organization in her name and in her memory…Part of my frustration, especially at the time [of Jennifer’s death] is that this issue wasn’t on my radar the way it needed to be,” says Crecente.

WHAT IS TDV?
This intimate type of abuse occurs between two people who are in a close relationship. It can be physical (hitting, punching), emotional (verbal abuse, cruel texts or emails or teasing) or sexual. Stalking is another common form of TDV that can cause anxiety and fear.

WHO ARE THE ABUSERS?
According to experts at Child Trends (childtrends.org), a non-profit research organization focused exclusively on improving the lives and prospects of children, youth, and their families, teens are more likely to become abusive if they have suffered abuse themselves, have inattentive or harsh parents, abuse substances like alcohol and drugs, are depressed or anxious, live in high-crime neighbourhoods, are antisocial or hang out with other delinquents.

WHY IS TDV SO PREVALENT?
While there’s some education about this topic in schools, Crecente says there’s a major need to make information about TDV
more commonplace. “We know to look both ways before we cross the street,” he sayss. “We don’t know that certain behaviour is unhealthy in a relationship.”

The other problem: parents aren’t talking to their kids. Whether it’s because the kids are unwilling to confide in their parents or because the parents feel too busy for a sit down or aren’t adept at discussing uncomfortable topics, these conversations aren’t happening as often as they should. “If you’re a young person who does not have a prior relationship with which to compare this one, you do not have a way to know what is OK and what isn’t…you can’t turn to your peers because they know as little as you do,” says Crecente. Teens need a trusted adult (be it a parent, school counsellor or close family friend) to help guide them
through this emotional rollercoaster.

HOW CAN WE PREVENT TDV?
Experts from Child Trends suggest talking to your kids about healthy relationships from an early age (in the tweens or even earlier). Discuss traits that make good friends (like empathy, kindness and understanding), and those (like jealousy, being possessive, over critical or demeaning) that are worrying.

Assume a neutral standpoint and don’t personalize it, they say. Avoid ultimatums and extreme statements such as “you can never date.” Another no-no: speaking violently. Don’t raise your voice and never say something like “I’d kill anyone who hurt you.” This could make your child afraid to approach you. It’s also important to look for warning signs and monitor your child’s behaviour and online presence. “Technology has created a new platform for dating violence to occur, and this type of abuse is fairly common,” say the experts. According to Child Trends, between 10 and 25 per cent of dating youth experienced cyber abuse in their relationship.

DEVELOP A SAFETY PLAN
Come up with a safety word or phrase that your child can say over the phone when she’s in trouble. It can be anything—like popcorn or I found your running shoes. When you hear it, you’ll know she’s in serious trouble and you need to contact the authorities.

Another must: have her memorize the phone numbers of family and friends. Her abuser may take away her phone, but this
doesn’t mean she won’t be able to get a hold of another one. Whatever you do, don’t assume you know everything there is to know about your teen. You don’t. And never assume that something like TDV won’t happen to her. Just because you live in a posh neighbourhood and have an honour roll student, doesn’t make her immune.

“I use Jen’s name. I use her image. I use stories about her for people to relate to her,” says Crecente. “For people to see
that it does happen. It happens to people’s daughters, their sisters, the girl down the street…she was a real person. And she was
just as real and just as strong as your kid.”

SIGNS THAT YOUR CHILD MAY BE A VICTIM OF TEENAGE DATING VIOLENCE
Warning signs of an unhealthy relationship may be difficult to detect, say experts from Child Trends. A few things
you should watch for include:
• Suspicious bruises
• Lower grades
• Loss of interest in hobbies
• An immediate need to respond to
call or texts
• Having a partner who is significantly
older (three years or more)

 

August 8, 2016

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On the road again

Hitting the highway this summer? Here are 10 must-haves for anyone travelling with teens.

Being stuck in a car with teenagers doesn’t have to be as bad as it sounds. As long as you’re prepared with snacks, music and an easy-going personality, you’ll all have a blast, right? Right! To ensure everyone—including you— has an enjoyable time, we’ve created a list of this season’s road trip must-haves to help make even the longest of car journeys more comfortable.

1.  HOUSE OF MARLEY BLUETOOTH® HEADPHONES Kids will be jammin’ in no time with these cordless headphones. Made from certified natural wood, recyclable metals and REGRIND™ recycled synthetic material, you can feel good about your ecological choice while watching the kids groove to their favourite tunes. Sync them to a Bluetooth device or attach the cord to connect to something without wireless capabilities. $69.99 from thehouseofmarley.com.

2. COLORIT ADULT COLOURING BOOKS Need a quick boredomkiller? Break out the markers and colour yourself calm with these dynamic books. Printed on single-sided, high-quality acid-free paper, these adult designs are easy  to rip out and share.  $US16  from colorit.com.

3.  ESCAPE CANVAS UTILITY BAG Travel in style with this cool, canvas bag from Forestbound. The split leather handles make it easy to carry and the metal feet keep it off the ground. If you don’t think the ESCAPE message sums up your vacation goal, have it monogrammed with your own initials  or personal message (for an extra $20). $US100 from forestbound.com.

4.  MONKEY MAT Whether you’re heading to the beach, forest or a grassy field, this funky mat is a perfect accompaniment. It’s water repellent and has weighted corners to help keep it steady (or you can buy stakes for really windy days, $US6). Plus, it folds into a tiny pocket, leaving extra room to fit in your teen’s favourite pillow. $US20 from monkeymat.com.

5.  360 DEGREE PANORAMIC VIDEO CAMERA Show off trip videos in a way that’s sure to make the neighbours jealous. This camera can capture images and videos up to five minutes long and stitch them together for a 360-degree view of your surroundings. Once you connect it to a desktop software or mobile app, you’ll be able to pan left or right, up or down and zoom in and out as if you’re still there. $299.95 from hammacher.com.

6. KINDLE OASIS Read on the go without carting a heavy bag filled with books. This latest addition to the Kindle family is small, light and quick— essential attributes for easy packing. It also boasts a high-resolution, 300 ppi Paperwhite display, which means the text is crisp and easy to read. Its dual battery system means it starts charging as soon as you connect the cover. Added bonus: when kids read, they’re quiet! $399.99 from amazon.ca.

7. CARBUDDY Is your son complaining about having to hold his tablet to watch a movie? Protect his delicate wrist muscles by clipping his device into this easy-to-use headrest tablet mount. After all, you wouldn’t want him to work too hard, would you? The soft, adjustable leather arms help keep the case on and it can be used in portrait or landscape mode. $US20  from lilgadgets.com.

8. ZUS CAR CHARGER Boost two smartphones twice as fast with this handy USB charger. That means no fights over who gets the charger. Added bonus: it can help find the car when you forget where you parked it. $US30 at nonda.co/ products/nonda-zussmart-car-charger]

9. WAZE Avoid speed traps, shave time off your journey, locate cheaper gas and find new routes all in one place. This clever app is the perfect road trip accessory and it’s operated by real drivers in real time, so you’re guaranteed to have up-to-the-minute information. Just turn it on, set your destination and go. Free from the App store, Windows Phone store and Google Play.

10.  LAMZAC HANGOUT Lounge in style with this vibrant inflatable chair. Super comfy and easy to pack (it folds into a small carrying bag), this trendy chair is the perfect lounging companion. Plus, it inflates without the need for a pump— just swing it through the air a few times and voila. $79, fatboy.com/ca

 

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Breaking Bad

Fenatnyl – the drug that’s killing our teens.

EDEN LAL WAS 14 when she tried marijuana. Before long, the Calgary-based teen was using it every day to escape her tumultuous life. Her father was convicted of molesting her older sister and her mother struggled through poverty and alcoholism while trying to raise four kids. It wasn’t long before the high from marijuana wasn’t strong enough to mask Lal’s pain, so she turned to more powerful drugs including fentanyl, an opioid that’s killed 665 Canadians between 2009 and 2014, according to the Canadian Centre on Substance Abuse. During her worst moments of drug addiction, Lal would disappear from home for days, sleeping on various people’s couches, in crack houses or on the street. “Her disease ended up taking over every moral, value and boundary she ever had,” Lal’s mother, Vanisha Breault, explains. “It was heart-breaking. Every single day I waited for ‘that call,’ the one phone call every parent fears.” Breault isn’t alone in her fear. Here’s what you need to know about fentanyl and what to do if your teen is trying it.

WHAT IS FENTANYL? According to Darryl Power, senior executive peer counsellor at the Alberta Adolescent Recovery Centre (AARC), fentanyl is “one of the most powerful drugs on the street and it is also a lethal chemical.” Used traditionally as an anaesthetic and to treat chronic pain, it’s 100 times more potent than morphine and 40 times more toxic than heroin. A mere two mg is enough to kill someone.

WHO’S TAKING IT? “This drug is spreading like an epidemic,” Power says. “It isn’t really considered a party drug because, like other opioids, it is a downer.” More often, kids use it alone or in small groups, often at someone’s home. While some take it knowingly, Power and other leading experts from the Fentanyl Urine Screen Study (FUSS) and the Canadian Centre on Substance Abuse,  believe fentanyl is being cut into pills on the black market, meaning people who think they’re taking oxycodone or another drug are unknowingly taking a mix containing fentanyl. A 2015 study by the BC Centre for Disease Control found that almost 29 per cent of the drug users they surveyed tested positive for fentanyl, nearly three-quarters of whom reported not having used it recently.

HOW CAN YOU TELL IF YOUR KID  IS ON FENTANYL? According to Power, fentanyl users will appear tired, have low energy levels, sweat and nod off in a reduced state of consciousness. “They may also respond slowly while communicating, have very dilated pupils and  appear really out of it,” he says. As with other drugs, parents should look for signs such as a change in mood, behaviour and attitude. Drug users usually spend less time at home and prefer to isolate themselves when around family. They’ll also become less interested in hobbies or activities they used to love. Items such as straws (some kids crush and snort the pills), rolled bills, pill crushers, syringes, nail files and a green residue (fentanyl tablets have a green dye) are also clues to look for.

WHAT CAN YOU DO IF YOUR  CHILD IS USING DRUGS? Drug addiction can happen to anyone, says Power. “We see families from all walks of life at our centre, and they are good people that love their children.” If you suspect your child has a problem with drugs, talk to them and seek help immediately. “There are many services available, but many parents are waiting for something catastrophic to happen before they will admit that there is a real problem,” he says. By then it is often too late.

CAN PARENTS PREVENT DRUG ABUSE? While parents can’t prevent addiction, they can encourage kids to make the right decision by providing an open and honest environment that promotes good communication, says Power. “Parents need to be able to talk to their kids, spread awareness and feel confident with their information about the dangers associated with recreational drugs. Parents also need to establish firm consequences for drug use,” he says. If that doesn’t prevent your kids from using, there may be a bigger problem behind their addiction, suggests Power. That’s a clear sign that it’s time to get help. Lal went to two sessions of rehab at the AARC but, last July, Breault received the call she had been dreading. Lal had suffered a near-fatal overdose. “By the time the ambulance got to her, she was blue. She was dead,” Breault recalls. Luckily, the medical staff was able to save Lal’s life and Breault fought to have her readmitted for treatment at the AARC. Breault, who has been sober for a few years now, continues to fight for the health and safety of now 17-year-old Lal who is still struggling to overcome the powerful addiction. “Seeing my [Eden] today is the greatest message to me to never give up, to never stop believing and to know that freedom and recovery are possible,” says Breault.

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A final farewell

In the height of their cuteness.

In the height of their cuteness.

This blog began six years ago as an e-mail to my closest friends and family. We had just moved to London from New York and the kids were filled with excitement (Marley just knew she’d be invited for tea with the Queen), confusion (saying, “my pants are wet” means something totally different in England) and sadness (Pierce longed for cuddles from our babysitter, Miriam).

I chronicled our attempt to get the kids into pre-schools (Marley toppled a foam-block tower onto the admissions director during one interview). I wrote about first crushes, first run-ins with the authorities and their first gambling experience. As these stories so obviously prove, we are fantastic parents!

From hiking in Wales to getting playdoh stuck in an ear canal and surviving bullying at school, I have shared some of our most happy, funny and stressful moments over the past six years. The best part, though, was revealing the hilarious things that came out of my kid’s mouths. Each and every comment I recorded has enriched my days and brought a smile to those who read them.

Now that the kids are older, it’s time to lay my blog to rest – at least in the form in which it currently exists. At nine and 10, Marley and Pierce deserve to have their ups and downs kept private. Plus, my awesome parenting skills during Marley’s tweens may make you so jealous it hurts to read about them! (I’m sure we won’t hit any bumps during those years.)

As I write this last “Stuff My Kids Say” entry, we are gearing up for another big move; this time to a more familiar side of the proverbial pond – New York. While we are ecstatic to be reunited with our friends (Pierce gets to hug Miriam again) and thrilled to be closer to our family in Canada, the move is bitter sweet. For one, Marley never did get her tea with the Queen – however, she did receive a signed letter from Prince Harry explaining why he unfortunately couldn’t make it to her pop star birthday party. And Pierce never did get the dog he so persistently asked about – but, we recently agreed to add a puppy to our family once we’re settled.

For the most part, we’re all excited to start a new chapter in our lives (well, Marley’s a bit mad at us for making her sit the evil 11+ exams for no reason – she didn’t even get to attend the school she was so excited to get into). Still, it’s hard to close the door on an experience that has enriched us despite its few rough spots. What an amazing time we’ve had living, loving and growing in what is hands down the world’s most beautiful and inspiring city (sorry New Yorkers).

Thank you for joining me on my journey through child-raising in London, and for laughing along with our escapades. I can’t wait to see what my adorable kids have in store for me during the years ahead (well, excluding the teen years. I’m okay with skipping over those).

Cheerio!

 

Einstein said what?
Marley: Einstein said, “It doesn’t hurt you if you try.”
Me: Einstein said that?
Marley: No, but somebody else who’s smart did.

Mom’s manners?
Pierce: Mom, you burp too much to be a woman.

Solving riddles with mom
Pierce: If mommy doesn’t understand, then mommy isn’t the woman I picked to be born from.

Star Wars – Spoiler alert
Pierce: Why did they kill Han Solo? It was like watching part of my childhood die.

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How we handled rejection

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Swinging high before the results.

Last night I let my 10-year-old daughter start a fire in our home. Far from a rampant inferno, this controlled blaze involved one letter-sized piece of paper and a few matches in our kitchen sink. Its flickering flames licked at invisible wounds she’d endured during a heart-break earlier in the day.

Currently, in London, thousands of 10- and 11-year-old children are anxiously awaiting the results of something called the 11+ exams – a series of gruelling tests in verbal and non-verbal reasoning, mathematics and English, not to mention interviews and assessment days. These tests help secondary schools to decide which of these thousands of bright and shiny faces will grace their hallowed halls this September. Some of the schools allow hundreds (sometimes more than 1,000) children to vie for as few spots as 30. The competition is literally fierce.

Children all over the city have been studying for a year or more (some parents start prepping their kids at 6!), conducting practice test after practice test in every free moment, to prepare them for this harrowing process. Their current schools teach lessons on interview techniques, verbal reasoning and exam skills. Some kids are tutored multiple times a week. Others have been forced to play musical instruments and join sports teams (whether they want to or not) over the past few years to pad their resumes. It’s akin to applying for university – at 10.

When I was that age, I built snow forts in the backyard, ran through the neighbourhood with friends and played endless games of hide and seek with my little sister. I would have aced an exam on Barbie’s latest fashion accessories, but put a three-hour exam in front of me and I would have folded like a cheap metal lawn chair in a windstorm.

My cheery 10-year-old, on the other hand, has been a superstar. She’s crammed for her exams with a “reasonable” amount of arguing. She’s gone into interviews with self-confidence and given impromptu singing concerts in two of them. My little girl didn’t even complain about sitting exams on three consecutive Saturdays.

The night after each exam, however, her resolve cracked. My daughter’s sweet smile slipped towards her chin as the pressure buried her under its heft. She cried herself to sleep, worried that she hadn’t done well enough to be accepted by a school. “What if no one wants me,” she sobbed into her pillow as I stroked her back.

“Of course they’ll want you,” I cooed. “You’re the spark these schools are missing. We just have to find the one that sees it.”

“But what if I don’t get in anywhere,” she blurted, a fresh bout of tears erupting from her eyes.

“Of course you will.”

“But how do you know?” Her wet eyes pleaded for me to have all the answers.

“I just know. You’ll be accepted where you’re meant to be accepted,” I said, vowing it to be true.

Now that the exams are over, we’ve all embarked upon the dreaded waiting game. Moms who are usually upbeat and chatty stand farther away at school pickup, avoiding other parents’ glances and try not to engage in conversations about results.

You can tell the ones who’ve had good news. The bags below their eyes have been covered with concealer, they’ve accessorized themselves and have replaced PJ bottoms with freshly washed jeans and heels. Some try to mask their smiles, but you can see it in their eyes. Others jump around exuberantly, hugging their friends and rejoicing in the fact that this horrendous process didn’t quash their child’s dreams or self-confidence.

I am happy for them. Honestly. I just selfishly wish that it was me jumping around with good news. Not so I could gloat, but so I didn’t have to see that look of dejection cloud my daughter’s vibrant blue irises – my interesting, unique, smart and talented kid who any school would be lucky to have.

Each time I hear the post fall through our mail slot, I rush to the door with a fluttering heart, hoping to see a large envelope from one of the schools. Small ones, we’ve learned, usually bring bad news.

This past Saturday, as my daughter was away writing her final exam, we received a small envelope. It was from her favourite school; the one she’d dreamed about attending for two years. My husband opened it hurriedly, praying that the letter contained good news. Unfortunately, it didn’t. In his hand lay the first major rejection of our daughter’s young life. I burst into tears as I envisioned having to tell her and witness her face crumple in sadness as her dream was squashed. I held on to the bad news for two days before I felt strong enough to approach her with it.

She took it bravely. “That’s okay Mom. I don’t care,” she said. “Really. Plus, it was tied for my first place, so I still have another good option.” She didn’t fool me. I saw the tell-tale tremble of her lower lip. She bit it lightly, trying to still its movement, but before she could stop it, the tears flowed. I held her in my arms as her body shook with each sob, willing myself not to cry along with her. I felt every ounce of that disappointment as much as she did.

When we got home, I showed her the letter and her tears re-emerged. As she crumpled the paper in her fist I said, “How about we burn it?” Her face lighted up as she looked at me in disbelief.

The flame danced in her eyes as she struck the first match, carefully holding it to the top corner of the letter. A small, half-smile appeared on her tear-stained cheek as the paper curled and vanished. When the flame went out, she lighted another match, repeating the process until all that remained were ashes.

That night, she fell asleep in my bed, hugging me whole-heartedly as she drifted off.  I lay facing her. As I watched her face relax with sleep, I knew she’d be okay no matter what news comes in the next envelopes. She was still smiling.


And now for a few quotes to make you laugh:

Why she needs so many pens

Marley: Don’t ask me why I have so many coloured pens in my bag. I use them and when people want to borrow them, they have to give me five hugs and tell me a joke. So I get a lot of hugs during the day and more jokes to add to my collection.

Discussing Rudolf the Red nose Reindeer and who deserves to “go down in history”
Marley: Michael Jackson didn’t go down in history. No one likes his songs anymore, but people still like Einstein.

Air dry
Me: You forgot to pack a towel for swim practice. Did you borrow one from a friend?
Marley: No. I just shook myself like a dog and then put my clothes on.

Dining options
Pierce: I’m not going to that restaurant. I would rather go to a Barbie museum or even meet a grizzly bear.

On being generous
Pierce: You’ve got lots of generosity left. So, why don’t you just give some of it to your son? It’s refillable. Yes it is. And when you give some away, you get more. Yes you do. But instead of using some, you are being selfish and making me go to the restaurant. Why are you not giving any kindness today? You should really. Come on. Don’t make me go to the restaurant.

Secret message?
Marley: [Opens a Sweet Heart. It says “BE GOOD”] Is this a coincidence?

Luckily, our car is blue
Me: (Ranting at a driver who, of course, can’t hear me) Thanks for waiting, Cow.
Marley: Mom, why is she a cow?
Me: Because she just pushed her way through when it was my turn.
Marley: But wouldn’t she be a bull? Cows are gentle and bulls are angry.
Me: I guess so.
Marley: Well, then it’s good that we’re not in a red car.

 

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