World Down Syndrome Day, and my friend Kaitlyn

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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.”

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

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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. 🙂

 

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In the Blink of an Eye: Autism and Wandering

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We had a little scare yesterday. I went to pick the Ninjas up from camp and found the littlest Ninja waiting outside the building by himself. He explained matter-of-factly that he was just really ready to leave, so he decided to go look for me. It didn’t even occur to him that he was doing something wrong until he saw how upset I was.

For anyone who has ever questioned why I am so hyper-vigilant with my son, this is why. Because incidents like this can happen far too easily.

I immediately brought him inside to the director of the camp and the three of us had a talk. The director was horrified, apologetic, embarrassed, and very concerned. They had let their guard down for just a second, and it happened in the blink of an eye.

It usually does. Children with Autism can be prone to wandering behavior, and that can put them at risk. Caregivers must put strict measures into place to help ensure a secure environment. Turn your back for just a moment and you could have a dangerous situation on your hands. We want to keep these precious children safe!

In the case of my young Ninja he can be impulsive, distractable, and not have a clear grasp of danger. He is also creative and wonderfully inquisitive and notices things the rest of us do not. Unfortunately that can mean that if he is busy noticing something interesting he does NOT notice if he wanders off or gets left behind. It has happened to me, and it was frightening.

I explained this about the Ninja when we first came to camp, and stated that a watchful eye was needed during transitions. I know from experience that dangerous situations can happen to even the most vigilant and nurturing of caregivers. People often assume that the Ninja functions on a certain level because he is able to be mainstreamed, and can forget that he still requires a certain level of care. He was once accidentally locked outside his school because he was behind a climbing wall and didn’t hear his teacher call the class inside at the end of recess. When he realized what happened he was left pounding on the door, crying and alone. Within a few minutes another teacher let him in, but it left him (and me) shaken.

While I am upset that these incidents occurred I am also grateful that my son escaped harm. I want to help prevent similar incidents from happening to ANY child. That is why I am talking about this. Not to shame or chastise anyone, but to help raise awareness.

When a parent tells you that a child in your care is prone to wandering, BELIEVE them.

I am still pleased with the camp and the leadership. They have been supportive and accepting of BOTH Ninjas. They’re also going to put more strict safety measures in place from now on. Still, when I stop and think about it I get chills. The adult watching the door looked away for just a second yesterday, and that’s all it took. My son slipped out in the blink of an eye.

It makes me want to sleep with one eye open from now on, just to be safe.

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Autism, Meltdowns, and the Unexpected Kindness of Strangers in a Supermarket

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The following is an excerpt of an article I wrote for Parents.com. Note: I do not describe my child’s meltdown in much detail because I feel that would be disrespectful to him. The details I did share were in order to share the importance of kindness, patience, and acceptance.

I have been a parent for over ten years now, and for a large part of those years I have also been an Autism parent. It has been quite the eventful journey; full of twists, turns, and lessons along the way. In my house we call it “Not Boring,” and have come to celebrate my son’s uniqueness. Back when my two boys were small and I was new to the Autism world, however, I spent a lot of time feeling confused and overwhelmed. I wish I could go back in time and reassure that worried mother, “Everything is going to be okay.”

One day in particular stands out in my mind. Many years ago I attempted the ambitious feat of grocery shopping with two small boys. Our trip to Kroger took longer than I would have liked, and the sights and sounds became overwhelming for my youngest. At the time he was pre-verbal, and his lack of ability to communicate seemed to heighten his moments of frustration. At that point I knew that he was facing developmental delays, and suspected Autism, but I had not discovered how to best help him when he became upset. I also had not yet learned all his triggers, and constantly walked around in a state of high alert because I never knew what the day would bring.

We finally finished shopping and approached the checkout counter to pay. I abruptly took a package of rice cakes out of the hands of my youngest son without thinking, and placed them on the conveyor belt. He was surprised and upset, because rice cakes were his favorite food at the time. A scream came out of his mouth and he took his frustration out the object nearest to him: the soft flesh of his older brother. My firstborn started crying, my youngest kept shrieking, and I desperately tried to calm the scene and comfort both children. I soon became completely overwhelmed, and all I could do was press my face against the soft hair of my oldest son and sob. I cried for his hurt, I cried for my own fears, and I cried because it broke my heart to see my youngest baby get so upset. Yet, as disturbing as it was for me, I knew it must be even more terrifying for him to feel so overwhelmed.

So there we stood, immobilized in the middle of the checkout lane… 

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To read the rest of the story please visit the original post, Autism, Meltdowns, and the Unexpected Kindness of Strangers in a Supermarket  at the Parents.com Special-Needs Now blog.

(Image is via Shutterstock and was posted on the original article.) 

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Celebrate what makes you unique! It’s Not Boring. Seriously.

Autism Action Month. DO Something!

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Image Source: Autism Acceptance Month website http://www.autismacceptancemonth.com/

April is “Autism Awareness Month.” I say that’s not enough. Parents of children with Autism are aware of the isolation that their 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. Adults with Autism 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.

It is not enough to be aware one month of the year. Honestly, it seems like the only people really paying attention to Autism Awareness month are people in the community. Others seem to just want to donate money to an Autism charity to ease their conscience and feel like they made a difference.

Here’s an startling, heartbreaking example of why we need to do MORE. My friend, Cindy, shared a story of what happened when she was shopping at Walmart this week with her son, Ty. Ty is Autistic and has limited speech. He’s also sweet and funny and we love Ty, but moving on… Cindy described an encounter they had while in the 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.

My emotions changed from inspired to heartbroken as I read it. Everyone else thinks we are freaks.NO ONE should have to feel that way. If you want to make a difference then YOU should be a friend to this man too. Not just in April, but EVERY month.

Want to REALLY make a difference? ACCEPT. APPRECIATE. ACCOMMODATE. ADVOCATE. Take ACTION. Keep reading for some suggestions of ways that you can improve the lives of people with Autism.  Continue reading