See Different, Be Different: Thoughts on Neurodiversity and More

seebe

I was recently asked to speak at at Autism Awareness Month event that was held by the exceptional education department of our local school system, and the audience was parents of autistic children. This is the transcript from that event, and is basically most of what I want to say about autism and neurodiversity all crammed into one post. But first some disclaimers: I am not perfect, I screw up all the time, and am still fumbling my way through this parenting thing.

2notperfect

I am also not an “expert,” nor am I Autistic* (see update), although I am neurodivergent. I am a mom and an advocate and a writer,  and I learn through experience, by asking a lot of questions, and by doing a lot of research. (*UPDATE: A few months after I wrote this post I was unofficially identified as on the spectrum by a therapist. In my FORTIES. It was based upon her observations rather than diagnostic testing, but nevertheless it was a revelation.)

My perspective may also be different than yours, but one thing I have learned along this journey is to not devalue someone else’s opinion just because their situation isn’t the same as my own. We should be open to considering one another’s viewpoints. We also should avoid the danger of turning this into a competition of whose struggles are worse, and unfortunately we have all seen that happen.

3regret2

(Image is inspired by the post “20 Things That Parenting a Child With Special Needs has Taught Me About Life in General.”)

We ourselves may have fallen prey to the dangers of comparison, by saying things like, “Well, at least your child can…”, or “You don’t know what it’s like to…” Friends, let me warn you that kind of thinking is a trap. Parenting is hard, I know that. Some days are exhausting and even sad. Life in general can be hard, and living with any sort of disability can be hard. But we are all in this together, and no matter where we are, or where our children are in the journey, we can learn from one another. Then when we get weary we have each other for support.

4harriet1

One way I try to help encourage other parents and support the Neurodiverse community is by writing and sharing my voice. I hope to help make the world a safer place for those who are different. I want to help de-stigmatize DIFFERENT. Because without our differences, the world would be VERY boring. Different is the new normal!

So I came up with the slogan: See Different, Be Different (image at top of post). Different is not bad, it’s not broken, or as Temple Grandin says, different is not less.

6accept2

Continue reading

Advertisements

The Day a Sea Lion Wanted to Play: Autism Acceptance in Unexpected Places

SeaLionPlay

We all want to feel happy, connected, and accepted. Sometimes that is found in ways we least expect.

One late winter day my family visited the zoo in Washington, D.C. It was early and we had the underwater viewing area at the sea lion exhibit all to ourselves. My youngest son had on a jacket with contrasting colors and we noticed it seemed to catch the attention of one particularly curious sea lion. I starting recording as the two darted back and forth on opposite sides of the glass, and she followed his every move. When my son realized what was going on he joyfully cried out, “She likes me!”

My son is *Autistic, and social interaction as well as playing with other children is sometimes hard and complicated. Some research has shown that children with Autism and other disabilities are actually  2-3 times more likely to be bullied by their peers. They also often find it easier to relate to animals and can connect with them more easily than with people.

My son was thrilled to find a playmate that day and to feel free to be himself. It came so easily. All the sea lion wanted was to play, and nothing else mattered; not social rules, not appearance. Just fun.

We learned later that the sea lion was named Sophie, and she was famous for interacting with her visitors. She accepted all potential playmates equally, but I would wager that few were as enthusiastic as my youngest son. As their game of follow-the-leader continued, he exclaimed, “THIS IS THE BEST THING OF MY LIFE!”
Continue reading

Autism ACTION Month

aprilaction4

April is “Autism Awareness Month,” but many say that mere acceptance is not enough. Autistic people are far too often marginalized and dismissed. Autistic adults are aware that many who claim to speak for the Autism community don’t actually ask Autistic people for their opinion. They are aware that many businesses refuse to give them a chance at meaningful employment. Parents are aware of the isolation that their Autistic children feel when they are mocked by their peers, and they are aware of the lack of sufficient resources to help their children thrive in schools.

It is not enough to be aware one month of the year, and 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 and feel like they made a difference.

A startling, heartbreaking example of why we need to do MORE happened while my friend, Cindy, was out with her son, Ty. Ty is Autistic and has limited speech. He’s also sweet and funny and loved by many. Cindy gave me permission to share details of an encounter they had while inside a store:

We were approached by an employee who seemed to have an intellectual disability of some kind. “Is he special?” He asked, pointing at Ty. “He sure is!” I said. “He is VERY special and I love him very much.”

The man said, “I’m special too. So I understand. He can be my friend”. I assured him that we could be his friend too, and agreed we’d high-five him whenever we shopped there. He liked this.

“Of course, everyone else thinks we are freaks”, he said.

What could I do but laugh? “Well maybe we are ALL freaks”, I said.

As I read Cindy’s words my emotions changed from inspired to heartbroken.

Everyone else thinks we are freaks,he said. NO ONE should have to feel that way. We need to do better to make the world a more accepting place for Autism.

That young man saw a kindred spirit in Ty and asked him to be his friend. If we want to make a difference then we too should be a friend to this man and other Autistic people. And we should do it all year round, not just in April. But how?

Want to REALLY make a difference? ACCEPT. ACCOMMODATE. APPRECIATE. ADVOCATE. Take ACTION. Keep reading for some suggestions of ways that we can help improve the lives of people with Autism. They don’t need our pity, but they do need our support.  Continue reading

World Down Syndrome Day, and my friend Kaitlyn

KLCover

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.”

KaitlynCollage

Continue reading

Our Talk with Christopher Ulmer of Special Books by Special Kids: A Seriously Not Boring Interview

ulmerinterview

 

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 video he 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. 🙂

 

Continue reading