April may be “Autism Awareness Month,” but mere awareness is not enough. We need to move beyond awareness to acceptance, and turn acceptance into ACTION.
Why? The world is aware of autism, yet autistic people face microaggressions or even flat-out discrimination every day. Autistic adults are aware that many who claim to speak for the Autism community don’t actually ask Autistic people for their opinion. We are aware that many businesses refuse to give us a chance at meaningful employment. Parents are aware of the lack of sufficient resources to help their children thrive in schools. Children know what it feels like to be bullied and isolated.
It is not enough to be aware one month of the year, and yet sometimes it seems like the only people really paying attention to Autism Awareness Month are people in the community. The rest seem to just want to donate money to an Autism charity to ease their conscience.
Want to REALLY make a difference? ACCEPT. ACCOMMODATE. APPRECIATE. ADVOCATE. Take ACTION. Keep reading for some suggestions of ways that you can help improve the lives of Autistic people. We don’t need your pity, but we would appreciate your support. Continue reading →
(Description of top image: A young boy with brown hair and a smile on his face leaning his head lovingly against his mom, who has awesome purple hair and is wearing a “Panic! At the Disco” shirt.)
This is what advocacy looks like. I recently had the privilege to meet this exceptional young man who is going to change the world. Actually, he is already changing the world.
It was a hot summer day so I took my two children to a local sprayground. We brought some toys to play with in the water, including a bright beach ball. My youngest son and I tried several times to get the bach ball to float on top of the water jets that came out of the ground, but we weren’t having much luck. Another little boy came over and started trying to help, striking up a conversation with me in the process. His name was Xander. My own son got bored and walked away, but my new friend and I kept trying, laughing at each failed attempt. Finally, after several tries, we accomplished our goal and let out a cheer.
Soon after we were able to get the ball in the air, however, Xander’s little brother knocked it down. He obviously enjoyed manipulating the water flow and watching the ball fall to the ground. Again. And again. And again. His fun was different from the one we had in mind, but he was still having fun.
His repetitive, single-minded behavior seemed familiar to me. What was even more familiar was the fact that he was so focused on what he was doing that he didn’t seem to his hear his older brother when he protested, “Stop!”
“Sorry about that,” Xander apologized, “He’s ADHD.”
I braced myself for what was going to come next, because I mistakenly thought that he was about to disparage his brother and his behavior. As the mother of an autistic child, and as a neurodivergent individual myself, I get sad when I hear family members talking down to or about their loved one.
I shouldn’t have worried.
Xander continued talking, “He’s not a bad kid, he’s just ADHD. He doesn’t hear me when I talk to him. Well, he can sometimes hear me, but he processes differently. He’s, like, a Windows phone in an Android world.”
“I get it!” I replied.
“You do?” Xander asked, incredulously. “I’m glad you get it. Some people don’t understand. They think he’s a bad kid, but he’s just different. There’s nothing wrong with that, though. But one time some people called the police on us. They don’t get it.”
Other people may not “get it,” but it was obvious that young Xander did. It was also obvious that he was being raised in a household where acceptance was actively taught. I stood there listening to him wishing I had a photographic memory. I wanted to remember exactly every word this remarkable young man said to me. His way of speaking about his brother was so incredibly heartfelt and supportive that it made my heart and my eyes swell. I was amazed that he had the bravery to talk to an adult to explain and support his brother. He cared very much about making sure that I understood his brother and didn’t judge him unfairly. Continue reading →
Parenting my youngest child has been quite an adventure. He is funny, kind, smart, creative, exuberant, and autistic. Every day, it seems, he teaches me something new. His unique perspective on the world is often surprising, and the way he fully engages with whatever experience life has to offer is a constant delight.
Something that happened during a recent trip to the zoo is a perfect example. We were watching a flock of flamingos when suddenly they all began to vocalize at once. It sounded like a bunch of noise to me, but I noticed that my son had begun to move. First he bounced, and then he was dancing; feet shifting, arms outstretched. He instinctively sensed the rhythm and the music in the flamingos’ calls to one another, and he couldn’t help but join in. His body demanded it, and he gave himself to it freely and joyfully. It was beautiful to see.
My son dances quite often, no matter where he is or who is watching. His big brother asked him once, as big brothers do, “Why are you dancing?”
On March 21 we celebrate World Down Syndrome Day. We celebrate uniqueness and joy and individuality. We strive for acceptance and respect for a group of people who are far too often demeaned, underestimated, and marginalized. Today I also celebrate Kaitlyn, whose far too brief time on this earth left a light that still shines brightly.
Kaitlyn passed away in December, 2013 after a brief battle with illness. She had Moyamoya disease, a little-known condition that can affect individuals with Down Syndrome. Her loved ones were stunned with grief, and it sent a shockwave through the local community. It seemed inconceivable that her life was taken so early. She was only 15 years old.
Kaitlyn had a lot to teach us about living and loving. She lived enthusiastically and joyfully. She loved unconditionally and freely without expectations or conditions.
Among her favorite things were the color pink, Disney movies, music, dancing, and her family. She showed those around her that true beauty lies in being, as her mother so eloquently put it, “Perfectly imperfect.”
My youngest son and I recently had the opportunity to talk via Skype with Christopher Ulmer, aka “Mr. Chris,” of Special Books by Special Kids. Usually Chris interviews other people, so we thought it would be fun to turn the tables and be the ones asking the questions to learn more about him and his students. For those of you who may not know who he is, Chris is an exceptional education teacher in Florida. His unique and affirming teaching style as well as his extraordinary class of students has captured the hearts of many and become a viral sensation. The first video to gain widespread attention showcased his “compliment time” with the students at the start of each school day, and it was featured first at “The Mighty” and then in an article on ABC News. From there the message spread all over the mainstream media, reaching far beyond the typical “Awareness” circles, and Chris even made an appearance on Rachel Ray’s television show. The messages from Mr. Chris and his students continue to spread all over the internet, and the page has even been mentioned on unexpected sites like MTV, prompting Ashton Kutcher to say, “Mr. Chris, you’re a great teacher.”
Two videos from our conversation are embedded at the bottom of this post. In the first videohe talks with my youngest son (his older brother decided not to participate because this isn’t his kind of thing 😉 ). Noodle Dog makes an appearance, there is some Minecraft talk in the middle, and an eyeball crossing contest at the end. Chris described his teaching philosophy and what influenced his decision to become an exceptional education teacher. I was also finally able to ask something I have long wondered about; it seems, when watching the SBSK videos, that teaching in a private school setting allows a level of flexibility in the classroom that wouldn’t be able to occur in a public school setting (for many reasons). He addresses that, as well as whether or not they have any sort of standardized testing. He also recalls an excellent and entertaining musical concert performed by his students, and all the work that went into it. You will have to watch the video to hear the fun story.
Update: here is the short “highlights” version of just the silly parts. 🙂