To the Kindergarten Teacher Who Never Gave Up on My Son With Autism

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You know who you are. You know what you’ve done. You try to deny it. You say he’s so smart. He tries so hard. But it’s you. You were the catalyst we needed. You made the difference. You.

You are so humble and genuine. You teach in a private school with neurotypical children. You are in a “regular classroom” but took my son in with open arms. He’s anything but typical. Yet you treated him like all the others. You insisted that you were his teacher, not his aide. You kept him mixed at the tables with the other students. You invited him onto the rug at story time. You kept him in the middle of the chaos, so he belonged.

Tracy Boyarsky Smith the mighty.2-001

But you allowed him to be different and embraced it. You allowed him to use red crayon on his tougher days to complete an assessment. You allowed him to sleep in the afternoon because his little body was worn out from working so hard all day long. You allowed him to take walks when meltdowns proved he had his fill for the day and needed an escape. You pushed him to beat the odds and work hard. You taught him more than I ever thought you would.

When we began our journey, I was so scared that he wouldn’t make it. “They” said he wouldn’t make it. Not at a typical school. Not at a private school. Only a special program would do. He has moderate autism, severe ADHD and everything that goes along with it, yet is quite bright. We were told that most children with his severity of disability don’t have the same cognitive ability he has. You saw it immediately. You saw it, and you insisted I see it, too.

When he came to you, he couldn’t hold a pencil. I just wanted him to be able to write some uppercase letters in crayon by the end of the year. Others had tried to get him to hold a pencil and write, but it just didn’t happen. Within two weeks of being with you, he held a pencil and wrote both uppercase and lowercase letters. You taught him to read. You taught him to cut with scissors. It wasn’t perfect. There were bumps and yelling and throwing and kicking. He tried to escape once or twice. Even with all this, you gave him the foundation he needed for the other team members to be successful, for my son to be successful.

You got in my face. You forced me to believe that he could do it. I fought you. But you insisted. You never gave up on him or me. You not only taught him, you taught me. I learned just how gifted my son really is. I learned that pushing him gently is what he needed. I learned that he can; he is able. I remind myself of this when he flounders. I remind myself of this when I worry. I remind myself of this when people doubt him. I doubt him no longer.

One of the greatest compliments, though, is what you told me at the end of the year. You said, “He made me a better teacher.” Not only did you teach us, you allowed him to teach you. He stretched your limits in many ways. You were already an outside-the-box teacher, but you allowed him to take you further and explore more. We challenged each other because of this little boy. This little boy brings out the best in everyone he meets.

Thank you for allowing us to work as a team. Thank you for seeing him for who he really is. Thank you for pushing us beyond our comfort zones. We are all better because of it. You made more of a difference than you’ll ever know or admit to, and we are forever grateful. Because of you.

Tracy Boyarsky Smith the mighty.1-001

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What a New School Year Felt Like as a Person on the Spectrum

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Growing up, I always found the last week of summer to be a bittersweet experience. I relished the freedom, yet I felt terrified about the new school year ahead. I’d start to build up an overwhelming amount of anxiety that would travel with me into the classroom.

If you had asked me what I feared the most, I probably would have said the social challenges that I always struggled with. But there was another difficulty involved, one that I didn’t understand until many years later: the sensory onslaught that a new school year represents.

Back then, I didn’t understand that I was on the autism spectrum and had sensory sensitivities. The world just felt like… well, the world. I didn’t know how to disentangle the reality I was perceiving from the individual senses that were piecing that reality together. It took a long time to figure out how it all worked — not just my senses, but their patterns and the different ways habit and change can impact them.

Today, I can look back and understand why going back to school was stressful: being at home during the summer meant being somewhere so familiar that I had long since acclimated to the sensory data of the surroundings. The lighting, sounds, tactile variations… my mind was used to it all and did not have to work as hard to process the never ending stream of incoming data.

The familiar is peaceful.

Change is the opposite. Change means the senses are raw and exposed and under attack.

And school was always that opposite after a summer immersed in the sensory familiarity of home.

A new school year would mean not just a different setting, but one that included a huge number of different rooms and activities. The classroom had one set of sensory experiences (the sound of pencils being sharpened, the peppery scents they caused, chair legs scraping floors, etc.). The hallway had another set (rowdy kids, their echoing voices). The playground had its own range of sensory experiences, as did the lunchroom, the bathrooms and so on.

It takes my mind quite awhile to acclimate to any new environment. And school was a dozen new environments all rolled into one.

At the time, I didn’t understand why I found simply being at school to be so overwhelming. Today when I go places, I immediately feel run down and I understand: my mind is just having to sort through a huge number of unfamiliar data points. The lights are different, and this can be painful until I acclimate (which can take many months). The sounds are different, which can feel strange and disorienting… again, I need time to get used to that.

If it is unfamiliar and it filters through one of the five senses, it can take quite a bit of time to acclimate to that newness.

For me, school was just layers and layers of confusing input that shifted throughout the day and intensified as we were shuttled from one activity or room to another. It felt like being inside of a giant sensory kaleidoscope that spun too fast — that I had no control over, that never stopped turning.

I mention it now because at the time, I never had words for any of this. I just stressed and felt overloaded and I couldn’t understand why.

I don’t know what could have made a difference, what sort of interventions might have been helpful. I just think understanding it would have been nice. Understanding it would have removed a lot of that confusion. And these being sensory issues, they were invisible to others. I wish the impact of school had been better understood by teachers and other students.

I think with kids on the spectrum, people see the discomfort and sometimes the outbursts. They can see the results. What they don’t see is the internal chaos that is being caused by factors most people aren’t even aware of.

Pencil being sharpened. Echoing voice. Chair scraping floor.

Simple things for some. Chaos for others.

Your reality can get thrown into that kaleidoscope and start turning and turning.

Follow this journey on Invisible Strings.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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.

Lead photo source: Thinkstock Images

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Disney Addresses Autism on This Week’s Episode of ‘Girl Meets World’

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The Disney Channel will air a special episode of “Girl Meets World” this week that the company hopes will start a discussion with kids about autism.

According to a press release, the storyline is aimed at delivering “both entertainment and information for kids and parents about Asperger’s syndrome, an autism spectrum disorder.”

The show’s main characters, Riley and Maya, show “empathy and acceptance as they support their friend [Farkle],” who wonders whether he may be on the autism spectrum. In the episode, “Girl Meets Farkle,” we’ll also see Mr. Matthews (played by “Boy Meets World” alum Ben Savage) address his students about “the importance of uniqueness and compassion.”

four members of the cast of Disney's Girl Meets World
Disney Channel/Ron Tom

The network hopes the story will “spark conversation among kids and their families,” and producers consulted with three experts: Elizabeth Laugeson, Psy.D, The Help Group; child development consultant Arthur Pober, Ed.D.; and Shiela Wagner, M.Ed., retired, Emory Autism Center.

While a number of hit shows have briefly touched on the subject, Bustle pointed out that the last time a notable TV character was diagnosed with the disorder was on NBC’s “Parenthood,” which wrapped up in spring 2015. Max Braverman, who was on the spectrum, dealt with bullying, and the series chronicled the struggles and triumphs of his daily life.

The “Girl Meets World” episode will air on Friday, September 11 at 8:30-9:00 p.m., ET/PT on the Disney Channel.

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Why It’s OK My Son With Autism Is Obsessed With Microwaves

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So let’s take a minute to talk about autism and obsessions. Now, when I say “obsession,” I really mean obsession. This is much different than just having an interest in a person, place or thing. Your child might really, really like SpongeBob, but a child with an obsession won’t see, hear, think or talk about anything else no matter how hard you try to distract them. I’ve found that when an obsession takes over a child with autism, it can consume them. Also, more often than not, I’ve seen a child with autism develop an obsession with an odd object, not just a toy or make-believe character. With that being said, I want to share with you a story about my son, Granderson, and how his obsession with an odd object completely transformed my way of thinking about autism obsession. Yes, my 4-year-old (at the time) taught me, his mother, that when it comes to autism obsessions…just let them be.

At about age 3, my son became obsessed with microwaves. Yes, microwaves!  I have no idea what his fascination with microwaves was because he couldn’t verbalize that to me. All I know is that his life, and in turn my own, became 100 percent consumed by microwaves. He would draw them constantly — amazingly detailed drawings — he would talk about them constantly. He would pretend everything in the house was a microwave. And he would find them everywhere. I had no idea so many gas stations had microwaves! Probably the hardest part of this obsession to swallow was that he beeped like a microwave — constantly! We bought every pretend microwave we could find, and then I resorted to making them for him out of cardboard boxes because it was the only thing that peaked his interest even a little bit. My entire house was filled with microwaves! This was by far the longest obsession he has had thus far. It lasted well over a year.

So when Halloween rolled around, I bet you can guess what my son wanted to be? Yep, a microwave. By now, I had mastered the art of cardboard microwave origami, so it wasn’t the effort of making the costume I dreaded. It was my fear of what other people would think of him wearing it. I tried to get him to change his mind. I’m sad to say I practically begged, but when an autism obsession is in full force, it’s like a Category 5 hurricane, knocking down any new idea in its path.

What would people say when they saw my 4-year-old dressed up as a microwave? What would other kids say? Would they make fun of him? I dreaded thinking about the comments about how he was “weird” or “strange” and immediately hit the fast-forward button in my brain to see him growing up and hearing comments like that. He already has extra challenges because of autism. Why couldn’t he be obsessed with something more normal and that wouldn’t draw attention to him in a negative way?

The silver lining was that a part of me was happy that he actually verbalized to me his own thought. It was his own idea, and he was able to tell me about it, which is a huge accomplishment for a child with speech delay and echolalia. And that is why, much to my own dismay, I gathered my supplies.

One cardboard box, one can of silver spray paint, one gray sweat suit, one piece of cellophane, one black sharpie and one battery-powered push button light and we had our microwave costume!

My son was thrilled!

The night came that I was going to take Grandy trick-or-treating in the church parking lot. I dreaded thinking about the large number of people all gathered into one parking lot. I dreaded the anticipated comments and stares he would receive. I dreaded the fact that it wasn’t very dark outside so he would be easily seen by everybody.  I was dreading the whole experience. But what I didn’t know was that my entire outlook on autism obsessions was about to do a complete 180!

We got out of the car at the church parking lot with my son holding my hand and proudly displaying his love for microwaves. Before we could even walk five feet the first comment was made…

Brittany Miller the mighty.3-001

“Oh my gosh, look at that little boy! He’s a microwave!” a lady said, pointing at Grandy and nudging the group of people she was with. “That is the most creative costume I have ever seen!” I watched the entire group turn their attention to Grandy. They were laughing at my son, but it wasn’t the kind of laughter I was dreading at all. It was the innocent giggles and smiles of other children and adults oohing and ahhing over how cute my son looked dressed up as a microwave.

All evening long the comments kept rolling in. Everywhere we walked, someone was complimenting my son about how awesome, cute and creative his costume was. I could only take credit for making the costume, but I made sure to mention that it was all his idea. My son reveled in all the extra attention and all the extra candy he received because of his creative costume idea. He was the star of the show. All eyes were on him, all comments were about him and all reactions were 100 percent positive!

That was the single moment that changed my outlook on autism obsessions. You see, it’s not about what the autism obsession is or how other people view it, it’s about the happiness and creativity it brings to your child. It’s about taking their obsession and letting them use it to be their own person. It’s about letting your child stand out in a crowd. Looking back, my child wasn’t afraid of what other people would think of him dressed up as a microwave, he was just happy to be a microwave. That fear lied solely within me.

So my here’s my advice on autism obsessions: No matter how strange they may seem, just let them be. Let your child grow with the obsession, learn with the obsession, be creative with the obsession and, most of all, accept the obsession. Don’t force your child to change their interests because you’re afraid of what other people may say or think. Let your child march to the beat of their own drum, and maybe you’ll find that marching along with them isn’t as hard as you thought it would be.

On that day, in just a single moment, my 4-year-old taught me the true value of acceptance, love, compassion, creativity and individuality. My 4-year-old taught me how to march along beside him, and for a single moment, he let me inside of his world. And it was beautiful.

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When I Knew in My Gut My Son Was Sick, but He Couldn’t Tell Me

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Six weeks ago we thought our son was gone. He was here but not “here.” He didn’t smile. He needed oxygen 24/7. He could barely move his body. He rarely made a sound and didn’t want to communicate. He looked at us as if he didn’t recognize us.

Today, he smiles with his beautiful dimples, he is without oxygen during the day, he can walk again, communicate again and, most of all, he finds joy daily. Now he’s riding a horse, playing sports and enjoying his life again. This is miraculous to us for so many reasons.

We had 6 to 8 months of rages. We thought it was low blood sugar, but in reality, his gall bladder was slowly failing him. The rages somehow began to be a daily occurrence, and his intensity ramped up. His previous doctors wrote it off as hormones and autism. We knew it was more but didn’t know what to do, so we moved to a new state. The drive was hard enough with multiple rages.

In our new state with a new house, new job and new everything, the rages became something we had never experienced before. The sheer violence we experienced daily could never ever be conveyed in words. For the first time in our lives with Kreed, we were afraid. Feeling that fear was one of the worst experiences of our life.

But it also pushed me to fight harder and look harder.

We knew our boy was an amazing kid and so loving and generous and joyful. He loved hugs and snuggles and loved to talk every day on his device about food and showers. Yet here he was beating himself, the house and us daily. Something was wrong, and we weren’t going to stop until we found it.

We finally got a break when the rages stopped suddenly, and he wouldn’t get out of bed, eat or engage with us at all. It was a break because we finally felt like the doctors wouldn’t see a kid with autism raging, but a kid who was in a health crisis. After four days of no eating and throwing up anything he ate, we sped off to the ER. The rest of our journey is chronicled in both “Out of the Darkness” and “Here but Not Here.”

boy smiling

The rest of this story is about his awakening. Our boy finally woke up from the pain, the medications and the fog that took him away from us. It feels incredibly miraculous that he has come back to us, and it’s a testament to his strength and our strength as a family. We have documented our entire experience from beginning to end with no filter. Our pain, our loss, our love, our return, our joy. We documented this journey to show others to never give up. If you know in your gut something is wrong, if you know it’s more than “behavior” and you know your child, keep fighting. If we hadn’t, Kreed may not be here today. If we hadn’t moved and met the incredible doctors at Memorial Hospital in Colorado Springs, Colorado, he may not be with us today.

This is also a testament to Kreed’s strength. Our son was in incredible pain, which we may never know or understand the depth of. He tried to tell us and kept asking for the hospital and doctors. We continued to listen and we took him to some doctors and were continually turned away and told that it was nothing. Listen to your kids even when they don’t say much. I am so thankful we continued to take him to the doctor and continued to question him. Never again will I doubt his communication attempts. He knows when something is wrong, and I can’t imagine how frustrating it must have been when he knew no one was listening and he was suffering in so much pain. I can’t imagine how this must have felt for him. No wonder he lashed out so severely until his body finally gave up.

I’ll never forget the day our son came back to us. When he smiled again. Laughed again. Hugged again. Kissed again. Communicated again. Those memories have slowly replaced the memories of him lying in that hospital bed and needing a machine to breathe for him. And we know for the rest of our life to fight, fight, fight for Kreed.

Fight for communication, fight for health, fight to be listened to, fight for life. I can’t imagine being Kreed, locked inside his mind, unable to fully communicate his thoughts and knowing he’s not always being listened to correctly. Knowing that his body doesn’t always work and causes him pain. I can’t imagine that.

And for that reason, I’m more than happy to spend the hours and hours it takes to get him to communicate on his device, teaching him how to do things himself, listen to him, fight for him and try to find new ways to experience joy. We are exhausted more days than not, but I barely feel it because I always keep in mind that I can talk, I can be listened to easily, I can make my own food and I can live a life without relying on other people to do everything for me. He can’t do any of those things and needs 24-hour supervision and someone to help him every step of the way. So no, I don’t feel like my life is over because we have to spend so much time helping him, and no, my exhaustion doesn’t compare to what he goes through every day.

And to my dear sweet boy Kreed, I am so sorry. I’m so sorry for not figuring it out fast enough. I promise to fight even harder next time and listen to your words. I will keep teaching you and helping you and most of all, finding even more joy for you to experience. We love you with everything we have and more.

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

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