My Positivity Failed Me Today

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At heart, I’m a glass-is-half-full type of girl, although admittedly, I’ve had phases when the glass was half empty – and sometimes even bone dry.

Still, I think my propensity to be positive is what has kept me mostly sane on this autism journey. I try to keep my essays about Barrett positive, because I loathe the thought of anyone feeling sorry for us. But sometimes, sometimes I can’t conjure up my inner Pollyanna.

I’ve been thinking about my Bear-Bear a lot lately. We recently had his annual IEP meeting, and it was good. As I mentioned last week, he’s also miraculously become a member of his school’s track team. I’m so freaking proud of this kid, so much so that I occasionally feel guilty about it. The accomplishments of my other three children rarely garner the crazy enthusiasm that Barrett’s do.

This past Saturday was Barrett’s autism anniversary. 12 years ago we received the diagnosis. 12 years – it’s unreal.  I can no longer claim it’s all just a dream. The diagnosis wasn’t a surprise, but that didn’t make it any less devastating, life-altering, or dream-crushing.

I consider the four years after the diagnosis as the dark ages. Keeping a positive outlook was difficult. With the exception of my daughter’s birth, I walked through my life with a very heavy heart. I was wounded and recovery didn’t feel likely. But recover I did. I’m not the same person I was pre-diagnosis, but I no longer consider myself broken.

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I have new dreams for my son, ones that are more aligned to who he’s come to be. To coin a popular phrase, I’m hopefully optimistic about his future, because he constantly surprises me. 12 years ago, I believed that with intensive therapies, Barrett would “recover.” I didn’t worry about the future too much. I focused on the present.

By the time my son got to kindergarten, reality began to dawn for me. I accepted that he would have a life very different from the one I’d originally imagined. I grieved accordingly, and reconciled myself to our fate. That doesn’t mean I’ve given up on my son – far from it. I still have high expectations for him, but I made the choice not to dwell on what could have been.

Six years ago I never would have thought my son would play or participate in any sport that wasn’t supported by an organization like the Miracle League or the Special Olympics. And that was okay. I’m a proud and hyper cheerleader at the Special Olympics each year. So I’m thrilled (and honestly, scared to death) that I’m going to be able to cheer for Barrett when he runs his first track meet, on a team that is not specifically for special kids.

Why am I rambling on? Because my positivity failed me today. I don’t know if it’s because of all the autism awareness thinking I’ve been doing, or the looking back that I’ve indulged in because of the anniversary. My stumble down the rabbit hole surprised me. Lately, I’ve been thrilled about my Bear-Bear, but there it was: a melancholy-filled moment of weakness. A feeling of regret so strong, that it really did hurt my heart.

This morning, as I watched Barrett walk up our driveway to his bus, I experienced a pang of grief, almost like a foreboding, which is something I haven’t felt in a long time about Barrett. He was dressed in a “GQ”-like manner (because of course I picked out his clothes), and sporting a new haircut. He had his backpack on, and over his shoulder he carried a duffle bag filled with the running gear he would need for track practice after school.

Bear usually gallops to the bus, because he loves going to school. But this morning, he sort of sauntered. He was grasping the shoulder strap of his track bag, so it wouldn’t slip off his shoulder. A wave of nostalgia slowly washed over me and started to pull me back. In that moment, he appeared so cool and confident, and I had a flash of what might have been. Of who he may have been, if not for autism.

I hate self-pity. God, it’s a useless emotion and an obstacle to living a happy life. But man, sometimes, I just can’t avoid it.  But that doesn’t in any way alter the love, gratitude and pride I have for my son today. No way.

A longer version of this post originally appeared on “The Latchkey Mom.”

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2 Lessons We Can All Take Away From My Church’s Most Valuable Volunteer

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Nearly five years ago, on May 7, 2010, Mary Mother of God Church and the entire Hillsborough, New Jersey, community lost a great man, Troy Conshue. I first met him in 2005. 

Excuse the cliché, but to know Troy was to love him. If you met him once, he was forever your friend or, as Troy always put it, your “buddy.” He had no vices.

Troy was not a man of great athletic prowess, intellectual ability or financial means, the standards by which the world all too often measures success. But as MMOG’s Father Lance McGrath aptly noted, Troy was someone much more important than a sports hero or a great scholar – he was a shining light on a hilltop who inspired all he met with his incredible capacity for serving his fellow man.  

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No, Troy did not win any MVP awards for his exploits. But he was twice named Volunteer of the Year — once for his work with the Ironbound Ambulance Squad in his hometown of Newark and later at MMOG, where he was awarded an MVV trophy – Most Valuable Volunteer. He was a tireless worker. Well, almost tireless. Troy would sometimes take a well-deserved catnap amid the many long hours he spent volunteering. During our church league’s basketball season, it was not unusual for Troy to spend 12-hour days doing everything from selling candy to sweeping the gym floor to hawking raffle tickets, fueled only by his unquenchable desire to help — and several Gatorades and hot dogs.

Troy did not write any great scholarly papers or give any brilliant lectures. Yet he was a great teacher, someone who taught by example. His lessons were the best kind – easy to understand and relevant to everyone.

Lesson 1:  When you need help, just ask.  

Troy understood it was OK to ask for help. He didn’t need much, but when he did need something, he was never shy about asking. If he needed a ride (as he frequently did, for he always had some volunteer work to do), he would call as many people as it took to get one. Troy had tremendous self-awareness and understood and accepted his limitations. As a result, unlike many of us, he didn’t see asking for help as a sign of weakness. A smart man.     

Lesson 2: When you want to help, don’t wait to be asked – just start helping.  

Troy didn’t need an invitation to help; he simply jumped in with both feet and got right to work. And whatever he did, Troy did it always to the best of his abilities and always with a big, ever-present smile, a virtual billboard for the adage, “’It’s better to give than receive.”  

Troy’s favorite volunteer activity was running the scoreboard and clock for basketball games. Grade school, high school, “over 30” games — he did them all.  He’d sometimes work a dozen or more games a week. An often stressful job (so much so that volunteers are hard to come by), Troy took tremendous pride in his work, and he never missed a beat… or a whistle. He knew all the rules of timekeeping (schooled, no doubt, by his brother, Tyrone, who sometimes officiated while Troy was on the clock) and was quick to pass on his expertise to new volunteers.  While the occasional clock malfunction brought consternation, frustration and puzzlement to the faces of officials, coaches and fans, Troy only smiled, ambled across the court and fixed the problem. 

There’s so much more to tell about the remarkable Troy Conshue: his love of the New York Giants, how children, including his beautiful niece, Ericka, especially loved him, how he never once complained about his many health problems, his phone calls in the middle of the day just to tell you how happy he was. Troy simply lived to serve others, and all he asked in return was your friendship. A generous man.

Troy’s final weeks were not easy. But he fought the good fight to the end, ran the race to the finish and always kept the faith. Five years later, Troy, know all your many friends, young and old, will always honor your memory by their own acts of charity and will forever hold a special place in their hearts for their best buddy.

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Each year Mary Mother of God CYO awards nondenominational scholarships to local high school seniors who have given back to the community through volunteerism and acts of charity. In the 2010, the scholarship was renamed in honor of Troy. Donations may be made to the MMOG CYO – Troy Conshue Spirit Scholarship Award, 157 S. Triangle Rd., Hillsborough, NJ 08844.

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10 Things People With Autism Want You to Know

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In honor of Autism Awareness Month, I wanted to share with you some things we, as people with autism, hope you take from April.

Here are 10 things people with autism wish you knew:

1. Not all people with autism are the same. If you’ve met one individual with autism, you’ve met one individual with autism.

2. We’re not all are math geniuses (i.e., “Rain Man”).

3. Being unable to speak doesn’t mean you can’t communicate. About 25 percent of people with autism today are nonverbal, yet they can be highly intelligent (like best-selling author Carly Fleischmann).

4. As much as you spread awareness for autism, we also want you to spread autism education. We want to be accepted for who we are and not seen as a label.

5. “Normal” is really only a dryer setting. Most of us are unique and that originality is a beautiful thing in our community that should be acknowledged.

6. People with autism are smart and talented. It may not be noticeable all the time, but all of our minds work in different and beautiful ways.

7. To those on the “high-functioning” end of the spectrum, please don’t say things like, “I could never imagine you having autism” to us. Autism is a spectrum disorder.

8. Kids with autism will become adults with autism. As much as we’d love to emphasize children on the news, we want you to know that autism is a lifelong disorder. We don’t want to be forgotten when we become adults, because we don’t grow out of autism.

9. If you see me in a public setting and I’m me rubbing my hands together or leaning back and forth, please don’t look at me like something is wrong. I ask for empathy in these situations as doing these things make me feel more comfortable.

10. Autism can’t define us. We define autism. This is the truth for everyone on this planet, actually. No one thing should be able to define us as people — we define ourselves. I’ve never wanted to be known by a label. More than anything, I want people to see me as Kerry.

So this April, realize that people with autism are here for a purpose. We all are meant to shine in this world. I hope we are given the opportunities to progress and live the best lives possible.

Just like anyone else.

A version of this post originally appeared on Kerrymagro.com.

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The Moments That Assure Me My Daughter’s Stepsiblings Will Always Love Her

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Screen Shot 2015-04-02 at 5.27.46 PM When I met my husband and found out he had two older children, I was nervous. Would they accept my daughter? Would they think she’s weird? Would they be upset when we had limitations as a family because my daughter has limitations? Could they love another kid as a sibling or even want her to be part of their family? Blended families are hard. Blended families with a child with special needs is mind boggling at times.

Fast forward a couple years.

My 13-year-old stepdaughter steals special moments with my daughter and makes sure she’s safe and happy. They dance together, they chat and they have this special little thing they like to keep to themselves. I love to “accidentally” sneak up on them sometimes.

My stepson, oh man. I don’t have words. He calls just to check on her. They hang out every second they can while we are all together. He sticks up for her and loves her so deeply and openly it melts me to a puddle of mush.

I am lucky. We are lucky. Everything is daisies and roses most days, but even on the worst days it’s still one of those cheap carnations you get for your prom date.

Just a few weeks ago my daughter had surgery, and you know what we got in the mail from my stepkids and their mom? A beautiful blanket with pictures of all the kids printed on it, and every awesome “Frozen” thing they could find. If that doesn’t scream “blessed,” I don’t know what does.

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Why I Don’t Consider Myself Disabled

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I have been in and out of hospitals since I was a very young girl. First, there was the bone cancer diagnosis. Then the chemotherapy. Then the radiation. Then the bladder damage. Then another bone cancer diagnosis, then more chemotherapy, then the amputation. Then the loss of my bladder. Then the kidney failure. And the kidney transplant. And the congestive heart failure.

The list goes on and on. Which is a good thing. It means I am still going on and on!

I just kept doing what I do. Granted, I had many many moments of feeling vulnerable, terrified, isolated, sad, but for some reason, I never ever thought of myself as disabled.

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That is, until I started to get some recognition for my work. I am the first amputee in the U.S. to practice and teach yoga. I have been doing it for a very long time. I didn’t “become” this in order to prove something.

I became a yoga teacher because it felt like a calling, down to the tips of right toes and even the combination of plastic, titanium, polyurethane left toes.

As the recognition grows, I must say, sometimes so do the sensationalist questions.

“What is like to have your disability? How did you handle having such a terrible disability at such a young age? How did you survive?”

And my personal favorite: “Are you afraid for your future?”

“Sometimes. Aren’t you? I mean, if you are asking that question, you must be afraid of something, right?”

Whatevs.

I am a big believer in the power of perception. If you believe something to be true, then so it is. I have never seen myself as disabled, so I have never labeled myself as such.

This has been a big revelation for me. In a world of “whole” people, I wasn’t aware how “disabled” I am until quite recently.

I think I’ll stick with what I always thought about myself. And roll out my yoga mat. It’s time to take a deep breath.

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When My Son Said, ‘You Don’t Know What It’s Like to Have a Body Like Mine’

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Dear Trevor,

2014 was hard on you. It was another year without answers, but a whole year in which you’ve grown, and your peers have grown, and you’re realizing that your life is different than theirs. It’s been another year that you have to carry the burden of a body that fights against you, and it’s wearing on your little tender soul.

You have experienced more anger this year. More shame. More fear. More defeat.

When you try to ride your bike, and your sister zooms around the driveway while you watch, it hurts. When you try to ride your scooter, and your sister whizzes off on hers to go play with a friend while you’re still trying just to manage balance and steering at the same time, it sucks your spirit dry.

And when you fall, it hurts. (Not your body, you’re used to falling. )

It hurts your soul.

It’s OK, Bubba. I’m here to tell you that it’s OK.

All year I’ve been fighting your despair, and getting frustrated with you for your emotions. I’ve been impatient with your fear, and fighting your anger. I thought it was because I don’t want you to feel those things (and I don’t), but now I realize — it’s because I am afraid of those things.

Somehow I think that if I can just stop you from being angry, sad, hurt, afraid, embarrassed… that you will be fine. That you will move through life without trials or trouble, and that you will have the life that I envision for you.

I’m promising you now that I will let go of those fears, and just let you feel yours. You told Dad a few days ago:

“You don’t know! You don’t know what it’s like to have a body like mine!”

You’re right. We don’t know. I have been reacting in fear, and forgetting who you are.  You are bright and strong, you are joyful and social, you are fun and active. Somehow I am forgetting to trust those things, and I am panicking that you will become withdrawn, helpless, and bitter.

I will trust you.

We will still push you to be strong, and to be your best. We will still encourage you to try and try and try and try again. We will still expect you to give everything you’ve got, and to refuse to be defined by your disability.

But when you are feeling broken, you can break with us. When your tears come, you can cry in front of us, or you can walk away and cry with privacy. When you’re angry, we won’t tell you you’re wrong. When you’re afraid, we won’t dismiss your fears.

2015 will be a year where you have more room to be you, more space to feel how you feel, and more freedom to figure this out. We know who you are, and we will be here – not to micromanage your emotions and reactions, but to be your anchors, your support, and your sources of strength.

Be patient with us.  We are learning so much with you.

Love,
Your Mom and Dad

This post originally appeared on “Little Blue Engine in Braces.”

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