Closeup of family feet in wool socks at fireplace

What My Daughter on the Spectrum Has Taught Me About Christmastime

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I watched the Rockefeller tree lighting with my kids this week. As you would expect there were Christmas songs and dancing, interspersed with commercials about the holidays and what to buy.

“Christmas is here!” Al Roker announced.

On cue my 15-year-old daughter, who’s on the autism spectrum, sat up and asked when we were leaving for Grandma’s house. “Not for a few weeks,” I said, as my 9-year-old wondered how it could be snowing in the city when it was 50 degrees and raining at our house 20 miles away.

Watching white flakes fall around a sparkling Sarah McLachlan, I explained that for some people snow means Christmas, but that snow was not real. As I tried to prevent Erin from having a full-fledged meltdown because we were not immediately packing up to go over the river and through the woods, it felt as if the accelerated commercialization of Christmas and global warming had conspired to turn this short homework break into a panel discussion on climate change and the subjectivity of time.

I tried to play the role of wisdom-filled parent but understood their confusion. This time of year can feel like a fun house where nothing is at seems, and retailers (and Facebook) will have you believe everyone is rushing to a fabulous party and time is moving at lightning speed. Act now, buy now, do not wait! As the weather remains temperate, the gradual climate shift only seems to compound the uncertainty. In our
northeastern suburb it seems incongruous to haul gifts and evergreens over a doorstep full of fallen leaves. It’s hard to usher in a new season when another refuses to leave.

This can be a bewildering time for anyone, let alone someone with cognitive disabilities, who might have trouble conceptualizing the length of a day, a week or a month or understanding that however high those Rockettes kick we are not going to Grandma’s now but instead four weeks from now. It’s no easy lesson.

Over the years Erin has learned to use the traditional markers of time to give order to her days. The sun rises in the morning. Morning means raisin toast and the yellow bus. She thrives on routine, so we break her days into small increments. Every evening we write the next day and date on a white board and list the order of activities, including any and all minutiae, “Wake up, brush teeth, eat breakfast…” If she’s going to do it, it’s on there. She finds this an intensely grounding and joyful activity.

Through the repetition of this routine she has learned what certain days signify.  Mondays: music, Tuesday: cooking class, Wednesday: fit club. Similarly she understands what to expect on holidays: Valentine’s Day: hearts and chocolate (good), Fourth of July: barbecues and fireworks (loud), and Christmas: Grandma’s House (bliss).

We celebrate Christmas at my parents’ house, and aside from her birthday it’s Erin’s favorite day of the year. My mom creates an evening that plays to all of Erin’s strengths. There are stockings bulging with gifts, music, dancing, Christmas books and stories read aloud. A Santa’s helper even arrives with a sack full of toys. Each of my kids revel in every detail but Erin more than most – because Erin believes.

She delights in the magic of Christmas. She takes the holiday and much of life at face value and does not question out loud the how or why of its traditions. Rotund man dressed in red, up and down the chimney. No problem. Let’s just be sure to leave him cookies and wish him well along the way.

What Erin does question is if Christmas is “here” and “now,” why are we not “there”? Distraught by the reality, she spent the rest of that evening sitting on the stairs – her signature protest move.

I empathize with her frustration. I too find the season overwhelming and swing daily between denial and panic. It can’t be December; I don’t even need a jacket. Oh my God, did that woman just say she’s finished with all her holiday shopping? What’s wrong with people? What’s wrong with me? I fully understand Erin’s inclination to plant herself on the staircase until she can wrap her head around the situation.

Sometimes I join her, and we just sit and listen to each other breathe — until we remember what helps get us moving again: the schedule. We pull out the white board and review what activities comprise tomorrow: dance class, a field trip to Target, a visit to our neighbors and slowly a smile emerges. We’ve learned when you’re caught in a tidal wave of a day or a week, sometimes the only way out is to live moment to moment and to focus on the routine – on the small things.

Erin’s hyper focus on tasks allows an intense recognition and appreciation of each and every minute. An uncanny focus on the present is what brings her joy – and every day brings its own set of magic and miracles. Erin has taught us to slow down and take the moments as they come, understanding that not unlike stepping stones, if we get too far ahead we may slip and lose track of ourselves and time itself.

So until it’s time to leave for Grandma’s house, we are going to keep TV watching to a minimum, keep the white board close at hand and hold fast to the most essential details of our days: wake up, brush teeth, have breakfast, breathe.

God Bless Us Everyone.

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Thinkstock photo by Artfolio photo

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When My Son on the Autism Spectrum Asked Me What Was Wrong With Him

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When my son was around 8 years old, he seemed to become aware that he was “different” from the other kids his age. The kids who had, up until then, enjoyed playing with toy cars and building blocks seemed to have outgrown those activities and moved on to more active forms of play. They tried to get my son to join them, but he would have difficulty keeping up with them. Eventually, both he and the other kids gave up trying. I would catch him sitting on the sidelines, watching the other kids play as if it were a mystery to him, and it broke my heart.

As time passed, my son became more and more distant from the other kids. I could feel his need to connect with them and witnessed his inability to do so. He began to withdraw from everyone. He was no longer the happy-go-lucky kid I’d always known him to be. He became quiet and diffident. I knew I needed to do something to make things better, but I wasn’t exactly sure what. Then, one day, my son came up to me and asked me what was wrong with him: Why wasn’t he like the other kids? Why couldn’t he make friends like the other kids? Why couldn’t he do the things the other kids could do so easily?

I knew then that I needed to tell my son about his autism. I was apprehensive about how he would react to the information, but I was also certain he needed to know about it. So, I sat my son down and told him about his autism, and his response soothed my heart and calmed my mind.

At the start, my son seemed confused about what I was trying to tell him, but as I explained to him what autism was and what it meant to have it, I saw him begin to understand. I found the books “Can I tell you about Asperger Syndrome?” and “Can I tell you about Autism?” very helpful in explaining autism to him in simple terms he could easily understand.

By the end of our talk, my son’s face lit up with relief and joy. It was like a weight had lifted off his shoulders. He hugged me tight and said he was so glad I told him about his autism. He said now he knew why he is the way he is and why he does things the way he does, and he didn’t feel bad about it anymore. He said he understood it wasn’t his fault. It wasn’t that he was not strong enough or not trying hard enough. There was a genuine reason why he found some things difficult to do, and he said he didn’t feel ashamed about it anymore.

My son blossomed from that point onward, and I was so glad I decided to tell him about his autism.

Image via Thinkstock.

A version of this post originally appeared on Rainbow in the Clouds.

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Marines Partner With Toys For Tots to Give Presents to Children With Autism and Disabilities

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The World I Want for My Neurodiverse Child

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As a parent of a child with autism spectrum disorder, I spend a fair proportion of my time reading about neurodiversity. What seems evident from the copious websites and books is the diagnostic approach of “signs and symptoms” seems to dominate the literature. I’ve seen limited celebration of what makes autism unique, and even less advice and support for those with a diagnosis. It saddens me to think my children will have to live in this categorical world that hands out diagnoses and then offers no support.

I don’t believe any person goes through the ordeal of getting a diagnosis without hoping there will be some advice and support offered off the back of it. Sadly, for many people — including in my experience with my daughter on the autism spectrum — this is not always the case. Many people are left no better after receiving a diagnosis than they were before. Many are given a report that lists evident struggles and told there is nothing they can do about it. I do not want my children to grow up in this kind of world; there needs to be a better way.

What I do want for my children is for them to grow to believe that being neurodiverse is an amazing way of thinking and living. I want my children to feel that individual quirks should be celebrated, not masked — and I want them to know that “different” isn’t just OK, but being different is amazing. I want them to embrace their differences and celebrate their uniqueness. Because I believe harnessing what is different can make the world a more interesting place to live.

I hope in the future schools will appreciate these “different” thinkers and focus on their strengths. I hope communities will rise together to educate the world on how difference is incredible and should be nurtured and embraced. I want my children to be talked about for what makes them truly stand out: their amazing caring qualities and their loving nature. I want a world where once a diagnosis is given, people are then supported and given strategies to enhance their daily lives. A world in which every person who leaves a psychologist’s office is armed with better coping strategies than when they arrived.

But most of all, what I want for my children is for them to live in a world where they feel happy to be who they are. I understand the lists of challenges are there for diagnosis purposes, but once they are grouped and analyzed, I feel the focus needs to shift away from this towards finding positive outcomes. This world doesn’t need any more “signs and symptoms”; what the world needs is more strategy and understanding. I hope together we can pave the way to make this future a reality.

Image via Thinkstock.

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A screenshot of a post on Ashton Kutcher's Facebook page sharing Kerry Magro's story

When Ashton Kutcher Shared My Story of Growing Up With Autism

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A few weeks ago, I met the multitalented Anna Kendrick in New York at one of her book signings. I told her about my journey on the autism spectrum. After I shared about her incredible response when I told her I have autism, the story went viral in our community, being shared by sites like The Huffington Post and The Mighty. I never thought the story would go to as many people as it did!

Then our story reached someone I didn’t expect…

Ashton Kutcher.

Via a summary of our story that was picked up by APlus.com, Ashton Kutcher shared my story of meeting Anna Kendrick to his over 17 million Facebook followers. I was at a loss for words. I’ve been a fan of Ashton’s ever since he was on “That ’70s Show.” I’d watch it on a weekly basis, and I still watch reruns.

Even after being a fan, I thought of what an amazing individual he is for the philanthropy work he does. Now he was sharing my story. What an incredible feeling it was. His description I think hit me the most. This is what he said about Anna’s response to me:

“Proof that even the smallest gestures can have a big impact.”

That’s exactly my reaction from the kindness Anna showed me that day in New York City. We need to remind ourselves that even the smallest gestures we do can truly make a difference.

And to Ashton Kutcher, who shared this story on his Facebook page, I’d just like to say thank you. You used your platform to get our story out there to the world, and for that I will always be grateful. As I wrote when you posted on Facebook, if I can ever help you in the future to help focus on the inclusion and acceptance of those throughout the world, just let me know. As I travel the country as a motivational speaker, I hope our paths may be able to cross one day. And if you are ever looking for another philanthropic cause to follow, I’ll be happy to help you learn more about this community and the causes I’ve been blessed to get to know.

You now have a friend in me for a lifetime, sir.

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

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Helping My Son on the Autism Spectrum Share His Stories With the World

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My son, Colin, blows me away every day. He is 28 years old and was diagnosed with Asperger’s at a young age, when the relatively unknown Asperger’s was still in a cul de sac of uncertainty. Now, Asperger’s is more well-known.

We spent Colin’s early years wondering, searching, trying to understand what it meant and what to do. I no longer think about that. I focus now on what I can do to share his creative genius with the world.

Colin is a storyteller — a really good one. He conjures up entire worlds, vivid mental images, clever plots and complex characters in remarkable detail, sometimes developing storylines, chapters, book sequels over long periods of years. Colin is a talented writer whose words dance off the page, but for the most part, his stories are in his head, and they stay there with remarkable recall.

There was a moment when it became crystal clear to me just how remarkable his brain was. It was middle school spring break on a father-son trip to the Grand Canyon. Driving across the Arizona desert, I probed Colin on his then multi-chapter novel work in progress, “Dimension Wars.” He told me there were 20 (or so) chapters, so I asked him to tell me in random order what was in each chapter. I’d ask about Chapter 3 and he would describe it. I’d then ask about Chapter 11 and he’d describe it. And so it went for a good long while. Immediate recall; no hesitation. And he’s still working on the story, never having written it down but still knows the whole story — chapter and verse.

And this is only one of the many stories he’s creating at the same time. At one point we created a list of 38 stories Colin had in his head — some short and others multi-chapter tomes.

Fast forward past high school diploma, past college diploma and the stories kept coming. And just a few months ago, he told me about the group role-playing game he leads. He plays 500 characters while the others in the game play one or two. He can tell you about each of the 500 characters without referring to notes.

The main challenge I faced as a parent of an adult on the autism spectrum was how to help direct Colin’s remarkable talents and passions. In his case, that meant him getting his stories on to paper (AKA the computer).

That’s what we did. We hired a writing coach, helped Colin create a website (www.fishandcherries.com) for his stories, movie and book reviews, flash fiction and random musings, and created a daily writing schedule. He wrote and he wrote a lot.

His head is still far too fast for his fingers — his stories are building up in his head faster than he can get them down. Staying focused can be a challenge for him, and he has faced the typical ups and downs of all writers. He is torn between wanting to work on his epic novels, movie reviews, comic books, and articles about topics that can make a difference in the world. There just never seems enough time.

I play the role of the coach, organizer and teacher. But he does the hard work of writing and creating new ideas. We work every day learning techniques about how to keep organized, focused and more productive. It’s a joy to watch. He is regularly writing for other websites — comic and book reviews for Fanbase, articles about autistic people in the Art of Autism and occasional articles for other culture-focused sites.

Last month, Colin published his first children’s book, “The Fire Truck Who Got Lost.” He wrote the text and recruited his talented friend Amber to do the illustrations. With the funds he raised in a crowdfunding campaign, we hired a graphic artist to create the book. It’s a charming story about a firetruck named Barnabus. You can find it on Amazon or on the Art of Autism Online Store.

Colin is energized by the recognition and is now playing a leading role in a new effort called the Autism Creatives Collective in the Bay Area, for creative people on the autism spectrum who want to share their talents with the world.

It’s just the beginning. Colin has a comic book in final writing stages, nine chapters of a novel already written, three volumes of a fan fiction series mapped out and a radio drama in development.

My job continues — supporting and encouraging but also playing the role of the agent looking for opportunities for Colin’s words and impacts to spread far and wide. It’s the best job I can think of, and there’s no joy greater than watching my son reach new heights every day. Watch out, world — Colin’s coming!

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