Gavin taking steps in physical therapy

When I Watched My Brother Take His First Steps With a Rare Condition

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Courtney and Gavin outside.
Courtney and Gavin.

When I wake up, I place my feet on the cool, hardwood floor, and I shuffle to the bathroom, I feed the cat, and make breakfast. I begin my day. A lot of us begin our days this way. By walking.

But not my brother, Gavin.

He doesn’t choose when he places his feet on the ground.

Gavin is a quadriplegic, meaning he cannot walk. He also cannot talk or eat solid foods. He needs help to do everything. He is nine.

Every morning, one of my parents carry his 40-pound body down the stairs. He is getting taller, standing over four feet. His legs dangle as they bounce against my parents’ thighs.

He is placed into a white, egg-shaped chair, where the soles of his feet can hit the floor. He shuffles and kicks them along the beige carpet of the rec room, and laughs to his morning cartoons, usually “Sponge Bob” or “Sid The Science Kid.”

He hangs out, with his feet planted, close to the world, while an immersion blender is blending his breakfast in the kitchen, and his seizure medications are being pulled.

Gavin will let one of us know when he has to use the restroom, wants water, or wants to go outside and play with his eye-gaze machine which we call his “talker.” Sometimes he will shriek or coo, and it is up to us to decipher, by pitch and tone, what he means and what he wants.

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And what he usually wants, like any 9-year-old boy, is playtime.

He wants to go in his walker.

When he was 6 months old, his incredibly rare, genetic disorder, Aicardi-Goutieres syndrome (AGS) was ravishing and trying to destroy his brain. My mom took him in the pool, even though he was in hospice care. She thought, one day, if he were to “beat” the disease and “beat” hospice, she would try to see if he’d be able to walk. She would want him to live as “normal” of a life as possible. The water, she believed, would strengthen his legs.

When Gavin was one, he was taken off of hospice — a graduate. He would live. But his life would be different.

At two, although, he had been rescued from hospice, Gavin had not been rescued from brain damage. To continue to strengthen his body, my mom put him in a “stander.” This helped train the muscles in his legs, to help teach them you are strong, even if his brain wasn’t sending the right signals.

When he was four, he received his pacer, which we call his walker. In it, he is strapped in, like he is riding a horse. His legs float, and his toes gently brush the Spanish tiles of the first floor of our home. The front half of his torso hangs over the front of his blue walker, to propel him forward. And then, he begins.

Left foot, right foot.

The first steps are always beautiful. For him, and for us, his family.

He is able to be vertical. Upright. His favorite activity is downhill racing. We bring him out to our driveway, and send him off from the top, and he glides, or rather runs. Left, right. Left, Right. Left, right.

At the bottom he shrieks, “Ooore.” We all know this to mean “more.”

People ask us, will he ever walk on his own?

We don’t know. We can’t know. But we hope so. I know physical therapy can be magical, though. It’s a place where hard-working bodies like Gavin’s, have a chance to strengthen themselves and reach goals.

Earlier this week, my dad took him to his elementary school, where he sees a physical therapist named Steve. Dr. Steve has introduced him to many playtime activities, like the trike, which Gavin adores. And most recently, the Upsee harness.

The Upsee harness is genius. It’s the closest Gavin gets to walking on his own.

When children are very young, they often learn how to ski by making a “pie” slice with their skis, a triangle. They straddle the wet snow, between the legs of their parents, as the two slowly guide down the bunny hill. The Upsee contraption is kind of like that.

My dad and Gavin work as a team. Both of their feet are strapped, almost together. My dad holds Gavin’s torso, and begins walking. Left foot, right foot. The Upsee is a thin strap, so small at times, I wonder if Gavin even knows his feet are strapped in parallel to my father’s at all. Or I wonder if he lets his heart and mind go, I’m walking.

Gavin taking steps in physical therapy
Gavin.

I can see it in my little brother’s eyes, as he approaches Dr. Steve, who is calling for him from the other side of the room.

“Come on Gavin! You can do it!” Steve says.

Gavin’s mouth opens like a clam, and the corners of his mouth weave to the side of his face. His smile becomes a big slice of summer watermelon. And he yells, out of his sheer excitement, from the feeling we all get when we accomplish the impossible. The thing doctors told him, when he was dying, he would never do. The endorphins sprint to his brain, that has been damaged by AGS. And it seems, even for the moment, undamaged.

Because joy doesn’t get a label – it is neither damaged nor undamaged. It’s neither “normal” nor abnormal. It simply exits or doesn’t.

And with Gavin, it does.

So when people ask, “will he ever walk?” Which is to also ask, “will he ever be normal?”

My answer is: he already is.

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Dear Justin Trudeau, Diversity in School Should Also Look Like This

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Dear Mr. Trudeau,

I just watched a video in which you spoke of the tremendous value of diversity in our public school system. I, too, value the ethnic diversity in my son’s public school in our neighborhood. Sadly, my daughter won’t get to experience it.

While we have worked tirelessly to include those of every race/ethnicity, culture, religion, gender, social class, and sexual orientation in our schools, kids with disabilities don’t always make the cut… at least not always in the school closest to home. Kids like my daughter are forced to attend schools that can be up to an hour away by bus.

My sweet little girl has a rare condition called Williams syndrome. You may recall my mentioning it when we met in the Distillery District in Toronto. Her constellation of challenges and strengths don’t fit with the typical curriculum, and our local school doesn’t have adequate support. This means that rather than attending our local school with the kids on our street and her brother, she’ll be bused to another school somewhere in the GTA. We don’t know where she’ll end up. The long process of her placement has just begun, and we could be waiting months to hear where she’ll land.

This also means her sibling will head to school each day, to a school that prides itself on diversity, and never see another child interact with a disabled sibling. He won’t see walkers, wheelchairs, sign language, or kids struggling with profound speech delay. He won’t get to celebrate his sister’s achievements with her Special Olympics teammates at school, and he won’t get to have her come and applaud a future science fair project of his. Maybe he’ll unlock a new way to help kids with learning disabilities tell time, or maybe not, since his teachers won’t understand why it matters to him, having never met his sister.

sister and brother smiling

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The other children in his school will lose the opportunity to interact with exceptional kids like mine and discover how the commonalities they share are more important than any differences between them. I realize in our mosaic of a nation, we strive tirelessly to celebrate what makes us alike and what makes us different from each other. We are doing an excellent job of raising a generation to pride itself on inclusion. I fear that unless we include kids with disabilities in all schools, we will never truly achieve the diversity you speak of so proudly. In the video you said, “It’s not easy. You can’t do it overnight. A diverse and open and inclusive education system and open circle of friends is what we have to work towards in our communities.” I, and thousands of other parents, need your help now. Help to work on this diverse and open education system with an open circle of friends in my community… and every community — so my kids can go to the same school, have the same friends, belong to the same community. They too, should benefit from the power of diversity in education in Canada.

This story originally appeared on mommydo.com.

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Why, as an Autistic Adult, I Fear the Brexit Effect

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In the run up to the Brexit referendum vote, as a relatively recently diagnosed autistic adult, I’ll admit I was scared.

I was right to be afraid. The country had descended into divisive and hateful rhetoric perpetuated by factions of a Conservative leadership. The same rhetoric that had been used by people in power to generate a genocidal movement against the Jews, not so very long ago, was being resurrected to further political interests, irrespective of the human cost. In the same breath that international courts of justice were still convicting people of war crimes committed during World War II, atrocities of war and hatred were being perpetrated against Syria and the victims who had fought all odds to escape the hell inflicted upon them.

History shows that in a society which seeks to implement political austerity the areas which will suffer are the vulnerable, the poor, the arts, economic growth, international relations, scientific and social research. I have witnessed that when communities are in pain due to very real economic and social struggle, it is easy for the powers which have inflicted these wounds to divert justifiable anger away from themselves to other sources of blame. In the case of Brexit, it was European immigration, and since the vote, European citizens living, working and successfully contributing to the U.K. economy have become innocent targets for exponentially increasing hate crime.

As a disabled adult I understand the effects of this kind of campaign of austerity and nationalism can be far-reaching and reverberate through many generations.

Steve Silberman, author of “Neurotribes” found that during the run up to World War II, Austrian psychologist Hans Asperger was researching a condition which he came to name “autism,” but laterally came to be known as “Asperger’s” (a term no longer used in the DSM V). In the vacuum of hatred and demonization of the disabled tearing through Nazi Germany ahead of the war, Asperger apparently focused his findings around the capabilities of his young charges to protect them from the gas chambers. The research focused around boys but did not claim girls were unaffected, simply that they had not been encountered during Asperger’s research. In the maelstrom of the last days of the war, this research became buried and then for decades lost in Europe by a society for whom the wounds of the war were still open and weeping. It was not until the 1980s that Asperger’s work was recovered and translated from German by a British psychologist, Lorna Wing, and the criteria for diagnosis broadened and opened up.

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The result of these lost years of potential advancement in understanding is a critical crisis in the autism community. Research still remarkably focused around curing children and a diagnosis criteria that is still dramatically biased towards boys has left girls and adults floundering without support and minors often at the mercy of archaic curative measures.

As increased understanding and awareness open up, society has seen an increase in recognition and diagnosis; however, continuing proliferation of stereotypes and misinformation mislabel this increase an “epidemic” which needs to be tackled rather than an opportunity to embrace and improve people’s lives.

In what the United Nations in 2015 called a “human rights crisis,” the focus on cure rather than acceptance and awareness resulted in a community which Silberman described as “one of the largest disenfranchised minorities in the world.” With an estimated 85% unemployment rate, a mortality rate of sometimes 30 years less than the general population, largely driven by suicide and a prevalence towards addiction of vulnerable adults who have never been granted the acceptance in society to make the connections required for a healthy, enabled and satisfying life, it is vitally important that steps to integrate and connect this group with society are made.

In my own life I’m almost grateful for the late diagnosis which allowed me to grow up unhindered by a label society did not understand. While having faced major difficulties in youth and young adulthood, which I now understand were as a result of neurological differences and challenges, I recognize I might not have had the opportunities to grow and experience the things which I have with an earlier diagnosis. That being said, by no means am I ashamed of my autism.

Growing up with a persistent sense of “otherness” and lack of belonging, I was continuously looking for somewhere to fit. The understanding I now have, even if it involves becoming a member of a group who corporately do not conform, is a relief and the answer to a lifelong puzzle. However, stigma and stereotypes still abound, and I feel the constant need to explain myself. I have friends who know more about my neurological processes and reasons for doing, saying or being unable to say things than they know about my preferences in pizza (Franco Manca, if you are buying), comedy, movies, art, literature or music. I don’t want to live in a world where I am forced to persistently second guess and justify myself. I am far more interested in finding out what your superpower of choice would be. Mine, for the record, is mind reading.

I have no desire to spend my life talking about autism, but in recent years the responses I have received, ranging from the utterly dehumanizing, “You can’t be ‘an’ autistic, you’ve been lied to, that is a lie,” “You can’t be autistic because, well, you’re quite funny, aren’t you,” to a former friend who took offense at my having to change plans due to an enablement support session and complained I was letting them down to spend the day being “differently-abled” and a “spastic,” mean I recognize the responsibility I have to work towards reducing stigma and stereotypes. I’m neither mentally challenged nor a savant genius, but I was once told I could not be autistic because a report showed my IQ was too high for me to be “that stupid.”

I recognize the responsibility that as someone classified as a “high-functioning” adult with a relatively regular life, not hindered by the speech and severe neurological difficulties of others like me, I have to speak out and to show the world what autism really is. For a long time this year and last I went through a period of feeling very lost and broken and that not fitting must somehow be my fault. I want to work towards an environment of that not being the case for anyone else.

I realized as I sat in North London watching the result of the EU referendum come in back in June that for a very long time I had been cosseted from what was going on outside of the city by a bubble of cosmopolitanism, a bipartisan result of the liberalism that shrouds the capital. I knew membership of the EU was vitally important to my life and that of my tribe because of the human rights, workers protections and research money enshrined within its membership. The U.K. is already the first country in the world to be investigated by the UN for its treatment of disabled citizens. Given my situation, three months on from that vote I am still very, very scared.

Considering the hidden history of autism and the current world political climate, it is now more important than ever before for those of us on the spectrum to make our voices heard, to advocate and tell the world our complex, multi-faceted and very human stories. It’s our responsibility to fight for every child and adult who struggled before us and for the rights of all those to come, so never again may any person on any spectrum of disability be dehumanized, tortured with invasive therapies, murdered or just ghosted outside of society to fade and disappear.

A common symbol of autism awareness is the missing puzzle piece, used to describe what people believe is a missing part of an autistic person that needs to be found. I refute that. It is not an autistic person who has something missing in them but society which has a missing piece that is the space required for autism to fit and for the neurodiverse to be enabled to flourish.

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255

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To the Person My Child Is Staring At

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This is to you, the parent of a small child at a soft play center we visited today. You were with your friends all enjoying a natter and a cup of tea while watching your small children play.

I’m sorry my daughter was staring at you.

I’m sorry she stood so close.

I’m also sorry that instead of leaving you to it after having stared at you once, she came back time and time again and stood there not speaking, but staring once again.

My child is inquisitive, curious and interested.

little girl smiling

She’s a puzzle of a million pieces that have no edges, no limits, left open for the world to add too, making it a trickery of games.

She’s exhausted and frustrated. She’s confused and puddled. Her mind is like a thousand intertwining rivers, bending like the Mississippi, her thoughts swimming up stream, her mind tiring with each twist and turn the processing takes.

She wanted to speak to you, she wanted to tell you how cute your baby was, she wanted to ask his name, she wondered why he was crying and screaming. And she almost certainly wanted to give him a cuddle and say hello to your beautiful baby boy.

She is not weird. She is interested.

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Most of all, though, I am sorry for not being sorry for all those things. The only thing I’m actually sorry for is your attitude.

I’m sorry you felt compelled to raise your eyebrows at your friend and direct them to my child. I’m sorry you had to nudge your other friend and practically point at my child to show her she was staring. Yes, we all saw her, even your friends.

I’m also sorry no one ever taught you how to talk to small children. I’m sorry you were taught to judge small children because they “look” different.

She’s just 6. She isn’t going to bite off your arm.

Next time, set an example. Say hi, and ask her name. If she’s having fun, she may not answer you. She may run off, she may be surprised at the sudden interaction. But at least you’d be leading by example. Maybe you could also kindly teach your own children it’s nice to be nice.

Follow this journey on Lots of Love and Affection.

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To the People at Work Who Ask Why I Can’t Just Reschedule That Doctor’s Appointment

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It starts the same way every time. You tell your boss that you will have to come in a little late on Monday. They ask you why. You say you have a doctor’s appointment. They say that the meeting you will miss is very important, and ask why you can’t just reschedule it.

First things first. The fact that any employer thinks that whatever first world crisis they have created for themselves by not planning ahead, not following through on deliverables, or frankly just not doing their job should trump any health-related situation is ludicrous. Since when is taking care of yourself or your family members in any way less important than getting a product shipped 24 hours sooner?

Second, when did they become medical professionals who can tell whether or not your appointment is important?

Third, I thought it was an HR violation to ask about your medical status in any shape or form.

It is really none of your boss’ or your co-workers’ business what you need to do to maintain your health. Here is why I personally need to attend my doctor’s appointment.

I have narcolepsy. I have to jump through a million hoops to even get the medication I need in the first place. If I do not attend regularly-scheduled appointments, I do not get my medications. Why is that important? I have an illness that affects my ability to have restful sleep and my ability to regulate my metabolism. If I don’t sleep, I am a zombie. I am not effective at work. I start to lose my short-term and long-term memory. My ability to drive safely continues to be compromised the longer I am not on medication. I am so tired that I go to my car at lunch and take a nap. I am so tired that I physically throw up from lack of restful sleep. I start to have auditory hallucinations and vivid and scary dreams.  I start to become irritable and angry at everyone around me.

It is really in all of our best interests that I continue to maintain the regulation of my illness. I am more productive at work if I am effectively medicated. I am not a danger on the roads if I am effectively medicated. I am a productive member of the workforce and my home if I am effectively medicated.

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I don’t ask you about your high blood pressure. I don’t ask you about your weight. I don’t ask you if you have sick kids or if you are eating your vegetables or taking your vitamins. You may not care about your health, and may assume I don’t care about mine. However, I do care. I care about being around to take care of my four children. I care about being able to drive a car and not injuring someone from falling asleep at the wheel. I care about not throwing up every few hours from exhaustion. Call me selfish if you want, but I think I’m being very reasonable.

At the end of the day, I just need you to recognize that I make a significant contribution to the workforce and my family. I do not abuse the privilege of having to take an hour off twice a year to extend the usefulness I can provide to the workforce and my family. So, please don’t ask me to chose between providing for my family and staying alive and productive for my family. You don’t have that right.

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A Special Needs Mom's Response to That Viral Facebook 'Joke' About Meltdowns

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When I first read the now viral rant of a frustrated parent seeking to establish a secret code to alert other parents when they wanted back-up while their child was having a meltdown – I was left feeling conflicted. I understand it was meant as a joke, but so many aspects of this rant made me uneasy.

I very vividly remember a time, six years ago, when the intervention of another adult was very helpful in resolving a tantrum by my typically developing daughter.

We had just pulled up to preschool, and my daughter was screaming and flaying about because she wanted to carry her Cheerios into her classroom. This could not happen. The more I tried to reason with her the louder her screams became.

I suddenly heard, “Vivian that is not OK.” I looked behind me to see the director of the preschool giving my daughter a very stern look to accompany those words. Within seconds Vivian calmed herself and walked into her classroom.

Before I could leave the building the director pulled me aside. She explained she had intervened because sometimes escalations like that can be stopped when someone who the child is not as comfortable with says something. It definitely seemed to do
the trick in this case.

There were a few things markedly different about this example than the one described in the now viral rant. First, the person intervening was a professional educator who was offering assistance to resolve the situation – she did not use harsh language or use her power as a stranger to scare my child into submission. She simply explained to my daughter that her behavior was not acceptable and would not be tolerated by any adult. I was truly appreciative for her assistance.

Fast forward four years, I am in a crowded bookstore with my daughter, who is nonverbal and on the autism spectrum. I was purchasing books as holiday gifts for my husband’s staff for a party that was to be held that night. I really could not leave even though I saw the signs that my daughter was headed toward a meltdown… an actual meltdown, not a temper tantrum. In my daughter’s case, the crowded environment, bright lights, being warm despite being cold outside, noises from the coffee shop, an inconsistent ringing of cell phones all worked together to create the perfect storm of sensory overload and exhaustion.

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When I first noticed she was moving toward a meltdown – I look off her jacket to try and make her more comfortable. I then handed her chew tube and encouraged her to use it for self-calming, but these efforts were not enough. Before I knew it, loud screams were erupting from my normally passive child. She began to kick at everything and nothing. She was violently rocking her body so her head would slam into her stroller. When she thought she was close enough to a shelf she would try to pull down as many books as she could.

This was one of my daughter’s first public meltdowns. The stares of the people around me were turning me to stone. My daughter felt them too because the more people stared, the more anxious she became, the louder she would scream and harder she would thrust her body.

No one offered to help, many people acted like it wasn’t happening, but enough people stopped what they were doing and stared at my daughter. Some even whispered, loudly enough for me to hear, about how I should handle the situation.

I was busy trying to comfort my daughter, just as any mother would when her child was experiencing so much discomfort. Caroline was starting to calm down and regain control of her body when the manager came over and asked me to remove my daughter from the store, as her screams were disrupting other holiday shoppers. I was relatively new to being a special needs parent so I did not know how to respond. I apologized and mumbled something about my daughter having autism –that she wasn’t throwing a tantrum but having a meltdown. The manager looked embarrassed and saw the large list I had in my hand and asked if he could finish gathering the books for me while my daughter and I found a quieter part of the store to wait. I accepted his offer because it was a solution that worked for all of us. Caroline would be able to calm down, my books would be gathered for purchase and other customers would no longer be bothered by Caroline’s meltdown.

But now that I have been around the blocks a few times, I want parents to know that when you see a child having a true meltdown, the best thing to do is not to stare. If you want to help, ask the parent if there is anything you can do. But judgmental looks and harsh words are going to have no affect on my autistic child during a meltdown. And while, they may have an impact on my typically developing child during a tantrum I don’t want her to learn it is OK to speak harshly or give mean looks to someone who struggling – whatever the reason.

I want my daughters to see every opportunity as one to demonstrate understanding and kindness, and the best way to do that is by modeling.  When I see a child having a meltdown or a tantrum, I tell my kids “it looks she is having a hard time.” I frequently ask the parent if there is anything I can do to help while offering a supportive smile. Most times, the parents refuse the help but appreciate the warmth of a smile in the middle of a storm.

I understand the viral rant was meant as a joke. But I want people to understand that jokes like this can lead to a greater level of misunderstanding and escalate true meltdowns. Our job as parents is a hard one, anyway you cut it. And sometimes we do need help from our village, but that help should come for a place of understanding and kindness.

Follow this journey on Failure2Thrive.

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