A Love Letter to American Voters From a Canadian Autism Mom

181
181

Dear Neighbors to the South,

First, an admission. We often walk around up here, north of the 49th parallel, with puffed-out chests when comparing our universal and publicly funded health care system to your system. We may even sneer a little, “Can you imagine having to live in the U.S. where a private health insurance company dictates decisions about your health? Your child’s health?” When I began my postdoctoral fellowship in 2012 in San Francisco, I certainly arrived at the airport full of this brand of arrogance.

This was before my child’s autism diagnosis. This was before I realized how having a child with a disability could change everything you thought you once knew.

Indeed, when we became increasingly concerned about our son’s development, my first instinct was to race back home to the supposedly safe haven of Canadian healthcare. My arrogance and ignorance would end up costing us all dearly. Because much to my surprise health insurance in Canada does not cover Applied Behavior Analysis (ABA) therapy for children with autism. Currently, Canadian governments do not see it as “medically necessary.”  Some provinces provide partial coverage, but it varies widely and waitlists can be as long as four years.

Now, I know you have serious challenges with HMOs and private health insurance  in no way do I wish to dispute or minimize this. However, from one neighbor to another, I want you to take a moment to congratulate yourselves for your hard-won success of Georgia becoming the 41st state that’s enacted insurance reform laws to mandate coverage for applied behavior analysis (ABA) therapy for children with autism spectrum disorders. By mandating coverage for ABA, state legislators have recognized and enshrined your children’s rights to what I believe is medically necessary therapy.

These state legislators, however, have largely come to this conclusion through sustained advocacy of parents like yourselves, and in particular through the efforts of Autism Votes. With 1 in 68 children in the U.S. now diagnosed (we suspect autism prevalence is similar in Canada, but we don’t currently have a system in place that collects this data, so we’re guessing), Autism Votes harnesses the power in numbers of voters in states (and federally) to lobby and advocate for insurance reform, new legislation and other state and federal initiatives benefitting families and individuals with autism.

You should be proud of this, of Autism Votes and of your state legislators who took seriously the very real threat of a large cohort of voters who presented them with a reform agenda. They listened this time. You have 8 states remaining; as of July 16, 2015, Hawaii became the 42nd state to pass autism insurance reform. But even when these states sign on — and I hope they will — the one thing I’ve learned in the short two years since my son’s diagnosis is that advocacy is chronic. None of us live in the kind of society yet that treats our children with the respect, support, and justice to which they are all entitled.

A group of parents in Canada took their complaint regarding the absence of insurance coverage for ABA to the Supreme Court of Canada in 2004, and the Court ruled that while ABA was a medically necessary therapy, the Court was not in a position to compel the Government to pay for it. So, Canadian parents are now left in a position to learn from and emulate your successful advocacy efforts; we must compel legislators to change the law (the Canada Health Act) to include ABA therapy for individuals with autism.

I am a proud Canadian, but this pride will never override my love and concern for my child. I wish we had stayed in California. I wish I didn’t have to fight this fight. I wish I could simply parent my child with the knowledge that his disability is well-supported with effective therapy interventions. Raising a child is difficult enough without having to assume another full-time job of chronic advocacy.

Dear neighbors to the South, you’ve shown me change is possible, and for that I thank you from the bottom of my heart. Thank you for renewing and sustaining my hopes for a better future for our children.

Love,
One Canadian Autism Mom

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

181
181

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

This Children’s Hospital Found a Great Way to Show Patients They’re Not Alone

725
725

A children’s hospital in New Jersey found the best way to show its patients they aren’t alone.

The Children’s Specialized Hospital, a pediatric rehabilitation center, treats children with a variety of special needs, including brain injuries, physical disabilities and life-threatening illnesses. One thing these children all have in common? They work through the often demanding obstacles their conditions present them each day.

To remind its patients they’re not in this alone, the Children’s Specializes Hospital started a social media called #FightFace, where people upload photos of themselves making “fight faces” to show their solidarity. Their theme song? Pop star Rachel Platten’s breakout hit, “Fight Song,” which plays in the campaign’s music video above.

#FightFace has already gotten some great responses. Take a look at some of photos submitted so far:

The Children’s Specialized Hospital also released a music video featuring hospital patients and staff featuring the song “Fight Song” by Rachel Platten. Watch the touching video below.

To learn more about the Children’s Specialized Hospital’s #FightFace campaign, visit their website. To support and participate in their campaign, search the hashtag #FightFace on social media.

725
725
TOPICS
JOIN THE CONVERSATION

Why I Cried With Joy When My Daughter With Cerebral Palsy Wore Flip-Flops

135
135

During the hot, sun-filled summer, I’m so grateful for flip-flops. Yes, flip-flops. I’m grateful for the skill it takes to keep them on your feet, and the sound they make as you walk. I never used to be so fond of them — until two summers ago.

I’m sure many of you reading this have had the experience of wearing a pair of flip-flops. And I’m also sure it’s likely an uneventful, subconscious experience for you.

Well, for my daughter, who’s a person with hemiplegic cerebral palsy, it was a learned skill that took a few weeks. It was a huge accomplishment for her since she’s used to wearing tennis shoes with a brace on her left leg.

So, for weeks that summer, I allowed her to wear them in the house only, just so she would take her time and not fall. Even though she was insistent on trying them, I was hesitant because her therapist voiced how awful they are for her feet and suggested it was not a good idea. But because she wants to be just like her friends, she wanted to learn. So how could I deny her the right to be like everyone else?

Recently we had to run to the grocery store for just a couple of items, and she proceeded to the door in her flip flops — for once, I did not object. When she realized I was going to allow her to wear them out of the house, she was elated and thanked me the entire way to the store.

The simplest thing we take for granted all summer long brought her such joy.

We went to the store and she took her time, proudly looking down at her feet often. And, in the midst of the hustle and bustle of the people in the store, a quiet miracle of our own was occurring. I started to cry a soft, grateful, joy-filled cry, right there in the middle of the store. My heart was full as I watched her accomplish this big task.

What are your flip-flops?

What are the things that have happened in your son or daughter’s world that would definitely be a miracle to you and your family?

If you’re unsure, I hope you will be able to recognize when something remarkable has happened, no matter how insignificant it may look to the world — and want to celebrate and share it with others. Our kids’ successes will motivate other special parents to keep hoping and look toward their next “flip-flop” moment.

I know some special moms are patiently waiting for their child to put a simple sentence together, while some are praying for their child to sit up or walk. For them, a new word or a strengthened muscle can turn into a day full of celebration and hope.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

135
135
TOPICS
JOIN THE CONVERSATION

The Unforgettable Thing My Husband Said About Our Child With Special Needs

472
472

As we rode the tram at the zoo, my husband, Brett, had a conversation with the cute 6-year-old boy sitting next to him. Brett said one simple sentence I can’t stop thinking about.

Our daughter, Hope, spotted a peacock and said, “Look a peacock!” She gets really excited when she sees a peacock. A little while later the tram traveled up a hill and Hope spotted another peacock. She said, “Two peacocks!”

blue-green-peacock-outdoors

The little boy next to Brett said, “Where’s the second peacock?” I wasn’t able to see the little boy’s face since I was sitting in front of him. He probably had a puzzled look because he was thinking, Why’s she seeing two peacocks? I only see one.

Brett said, “There’s only one.”

The little boy sweetly asked, “She doesn’t know how to count?”

Brett said, “She knows how to count. She just does it different than you do. She’s counting the peacock that she saw earlier and this one.”

She just does it different than you do. That’s the sentence that I can’t stop thinking about. I love that sentence. That’s the sentence I always want to remember when we’re living life with our girls. They aren’t doing it wrong. They’re just doing it different. The little boy saw one peacock. Most of us would’ve seen one peacock. Hope was still thinking about the first peacock, and then she saw another peacock. One peacock plus one peacock equals two peacocks. She was right. There were two peacocks.

I wish everyone could see Hope and our other daughter, Mikayla, through their daddy’s eyes. They would realize our girls just do it different. Different means they sometimes do it slower than we do it. It also means they sometimes do it faster than we do it. Different can mean she stands on her head to watch TV while we’re sitting on the couch. Or their pants feel funny while our pants feel fine. Different means she’s holding her ears and we have no idea why. Different means she didn’t answer a question because she didn’t understand it. Or she can spin and she never gets dizzy.

Our world is full of different. Different isn’t wrong. It’s just different. Our family may look much different than other families. If you see me straightening Mikayla’s pants, just remember her world feels different than your world. If you see Hope holding her ears when she walks past a waterfall, just remember her world sounds different than your world. If you run into us at Walmart, you’ll hear our girls talking about the balloons on the ceiling. I didn’t know balloons often float up to the ceiling in Walmart. I have only two things on my mind when I go into Walmart. Get what’s on my list and get out. I never spend time looking at the ceiling.

But our girls are different. They notice everything around them. There’s a world around me I don’t take the time to look at. But our girls have all the time in the world to look at their world.

Yes, our girls just do it different. And I want to do it different, too.

Follow this journey on Two Upside Down Turtles.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

472
472
TOPICS
JOIN THE CONVERSATION

On Days When My Son’s Life With Epilepsy Seems Impossibly Hard

94
94

In a twisted sort of way, Saturday morning’s seizure brought a morsel of relief, albeit fleeting, to my child. Like the mounting tension between wrestling tectonic plates, the pressure in my son Calvin’s brain seems to build until it quakes, and in the temblor’s wake we often find relative calm.

The previous morning, we’d tested the waters of our favorite cafe in the next town over. We’ve been weekend regulars there since Calvin was a tot, ducking in and clumsily weaving our way between clusters of small, round tables and wooden chairs, overstuffed sofas and flocks of coffee lovers, many who recognize us and we them, mostly because of Calvin.

“I’ll have an iced coffee,” I said to a familiar smiling barista.

At the table behind me, Calvin spilled his cup of salted cucumber bites, then pierced the calm with his sonic siren shriek, not once but twice.

“OK, kid, one more time and we’re outta here,” my husband Michael quietly warned our flailing child, who at times has little control over himself in the grip of benzodiazepine addiction and withdrawal, especially in the path of an imminent seizure.

Seconds later we were packing up only minutes after we’d arrived — a scene we’ve played far too many times before. Michael whisked our manic kid outside. Flustered, I gathered Calvin’s containers of diced fruit and sandwich, his sippy cup, backpack, bib and rag, Michael’s coffee and my half-eaten cinnamon roll.

“Christy,” the cafe owner, Tonnie, said as she approached, “don’t ever feel like you have to leave because of Calvin.” She went on to say that it’s not like he’s some kid who is simply misbehaving. “He’s part of our community.”

We hugged each other, and I thanked her and told her how much her words meant to me. As I turned to go, I began to weep. Outside, I struggled one-handed to untie our dog Nellie from a sidewalk tree when Maria, a fellow patron, came out after having seen me crying.

“Can I give you a hug?” she offered, before wrapping her thin arms around me, her delicate frame belying her soundness. She, too, told me that Calvin was part of the Cafe Creme community and that we didn’t need to worry about his behavior.

“It must be so hard,” said Maria, once a stranger, who has watched Calvin grow up amidst the crowded cafe, no doubt having seen him on days leading up to seizures and on days in the thralls of benzodiazepine withdrawal.

“Relentless,” I added, mentioning his recent string of manic outbursts and the seizure no doubt on its way.

Maria helped me clip Nellie to the leash, and we said our goodbyes. Crossing the street I spotted Michael and Calvin strolling along the brick sidewalk beside a neat row of shops. I stopped, sat on a bench, tipped my head back and closed my eyes for a spell, wishing we lived a different reality.

Saturday morning’s seizure didn’t yield the usual longterm calm, and that night Calvin had several brief, partial seizures every hour after midnight until Sunday afternoon. An extra dose of THCA cannabis oil and a dose of rectal Valium did nothing to quell the storms in his brain.

As I write this, Michael and I are holding vigil in Calvin’s darkened room, Michael in bed beside him while I perch on the changing table in what feels like Calvin’s mini hospital. Inside the air is still and close. Outside the day is gloriously warm and sunny, not too humid. I think to myself that on a day like today, which is headed into the 90s, we should be taking our 11-year-old son to go swimming or for a walk with Nellie in the cool of the woods and perhaps to Cote’s red shack for an ice cream cone. But that is the life one must give up when parenting a chronically ill, severely disabled child who, most regrettably, is in withdrawal from a drug that probably should never have been prescribed and whose dose likely never should have gone as high as it did, Calvin having suffered habituation and eventual loss of seizure control — one of the many risks of benzodiazepine use.

Instead, as I watch my son sleep between fits of seizures, retching and painful tears and, with the shade drawn against the sun, I dream — through the impossibility of it all — of what one day might be mine again, but without really knowing how.

A version of this post first appeared on Calvin’s Story.

Do you have a story about your experience with epilepsy? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

94
94
TOPICS
JOIN THE CONVERSATION

10 Things I Recommend Doing After Your Child’s Autism Diagnosis

263
263

I had the honor of being interviewed by Kerry Magro of Autism Speaks for his cable television show, “Different is Beautiful.” It was wonderful meeting Kerry and talking about my writing and my life with the boys.

Kerry asked me a variety of questions that day, ranging from how I got started with blogging to what some of my initial reactions were when my eldest son was diagnosed with autism. I enjoyed speaking about both topics, but it was the last question that stayed with me.

By the time my son, Justin, was diagnosed, I’d noticed his differences for almost a year — putting a label to them was almost a relief.

Eleven years ago, diagnoses for children under 18 months weren’t common. Justin was 17 months old when he was diagnosed. But today, some children are given a suspected diagnosis as early as 6 months old, and their parents won’t have a year to ease into their suspicions that their children are developing differently than neurotypical children. For many parents this label might come as a shock. Their first reactions might be denial, anger, fear or wondering if somehow they caused the diagnosis.

At the very least, most parents will probably feel overwhelmed.

There are things parents of newly diagnosed children can do in the first weeks and months that can help those overwhelmed feelings. Here are my top 10 things I did 11 years ago and recommend to all of you:

1. Ask for help. It may take you a while to figure out what you need, but ask for it. People will generally want to do something for your family but won’t know exactly what to do.

2. Make friends with other parents of autistic children. They can be wonderful resources and provide invaluable support.

3. Find an autism support group. It may take a while to find the right fit; don’t get discouraged, keep trying!

4. If you’re married or in a relationship, make time for it. You will need to support each other a lot in the first few months after a diagnosis. Make sure you get out and take some childless time for yourselves.

5. If you know you’re going to need to see various professionals for your child, make the appointments immediately. Sometimes it takes six months to get into an office. Further diagnoses may help your child get treatments or therapy.

6. If it’s too hard to tell people, ask a friend or relative to share your child’s autism diagnosis with others. I did this with our second child on the spectrum, and it made life a lot easier.

7. Check out the Autism Speaks website and take a look at their tool kits. I believe there’s a lot of valuable information there.

8. Make lists of what you need to do and perhaps purchase a separate calendar for appointments, due dates on paperwork, etc. This will hopefully help you feel more organized and less overwhelmed.

9. If you’re ready to talk about your child but you don’t want opinions, tell people you just want them to listen. People mean well, but unless they have an autistic child, they haven’t walked in your shoes. Telling them up front that you just need to vent can help.

10. Take care of yourself. Keep doctor’s appointments you’ve made for yourself, and carve out alone time if at all possible. You will need a break once in a while!

Follow this journey on Autism Mommy-Therapist.

263
263
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.