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Posts Tagged ‘Williams Syndrome’

There’s a video going around. I won’t post it, but you know the one. A couple of teens beat up a mentally disabled man in Newark, Delaware. They knock him to the ground. Hurt him badly.

That man on the ground is Coran. He has Williams Syndrome, just like my son.

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Here is our story.

Here’s more information on Williams.

Of course I’m heartbroken and afraid. This is the kind of thing I worry about Every. Single. Day. My son was physically abused by a teacher when he was four years old. That changed our lives and opened my eyes to the world that we truly live in. It’s ugly, but we can make it beautiful.

I have a desire to be more proactive in comforting and soothing. To not only step in when there’s a crisis, but also to actively add something positive to my area of world. I have a project coming up called The Joy Rock Club. I’ll tell you more about it later, but it has to do with my idea that small things lead to great things. Minutes = Novels. Tiny acts of kindness can cheer somebody, who in turn can hopefully cheer somebody else. Let’s stand against the tide, my friends. Counteract what we can with our Care Bear Stare.

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If anybody would like to send a card or goodie box to Coran and his family, the Delaware police department said they would make sure he gets it.

Attention Det. Sendek
C/O Coran
3601 North Dupont Highway
New Castle, DE. 19720

Let’s stop bullying. Let’s not participate or merely stand by. Let’s be proactive in not only stopping the bad, but also equally active in spreading happiness.

You guys are awesome for that. :)

********UPDATE********

Two teens were arrested and one turned himself in. They were charged with misdemeanors and released to their parents. You can read about that here.

A misdemeanor? They’re videotaped attacking the same person TWICE, and if this isn’t a hate crime, I don’t know what is. Also, yesterday in the same town, a 12-year-old with cerebral palsy was assaulted by teens while in his wheelchair. Let’s pray it’s the same group of kids because I’d hate to think there are more monsters running around.

I, along with others, am writing a letter to the governor of Delaware pointing out the severe medical problems that people with Williams Syndrome experience, and how seriously this beating could be affecting Coran’s health. I’m asking him to take a long, hard look at this case and stand up for those who need protecting.

If you’re interested in writing him, the contact link is here.

Also, here’s a link from The National Bullying Prevention Center about bullying people with disabilities. It’s wonderful to read and share. Now let’s go out there and be the front line between bullies and victims who can’t stand up for themselves. Because you know what? I can stand up for you, little guy. And I’m willing to do so.

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I can’t tell you the tears, both his and mine, that have ensued because of new schools.

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This is my darling Niko. He has Williams Syndrome, and had been shuffled from school to school to school until he ended up in an autism classroom with the BEST teacher ever. She loved him and he thrived with her for three years. Now it’s time to send him to middle school. Yikes!

There are a few things I learned during all of these transitions, and if any of these tips can help you, you’re welcome to them, my friend. Anything to make it easier, yes?

1. Familiarize your child with the school.

If you can go and wander around, do so. In Vegas everything is chained up and no wandering is permitted, so we looked his school up online and familiarized ourselves that way. Today is the Meet and Greet, so we’re going to meet his teacher and see the school in person. We already picked out special landmarks (the main doors, the mascot, etc) so he can identify them when we get there.

 

2. The teaching staff will take their cues from you.

I wish I had figured this out earlier. I was always so overwhelmed by Niko’s explosive behavior. He would squawk and bang his head against walls. He’d also headbutt and bloody my nose. He’s a very sweet child, but would become anxious rapidly, and his first teacher treated him horribly.Because of this, he freaked out whenever he was at school. I was terrified that he’d be unloved and abused again, and would often introduce him with that fear in my eyes and voice.

I was teaching the staff to be wary of my son. I didn’t mean to, but I was so busy warning them about his triggers that they didn’t have a chance to see what a beautiful, affectionate boy he is. So  I changed my approach.

“This is Niko. He loves washers and dryers. He struggles with handwriting but types beautifully. He loves music and if you give him a chance, he’ll love you.”

This is how I introduce him now. Yes, we can discuss triggers and negative behavior and all of these other important things. But first off, I introduce them to my son.  And he will bring joy to their lives. Joy, not fear.

 

3. Familiarize staff with your child and their diagnosis.

I use a scrapbook that he takes with him on the first day. It’s simply made out of paper and copied pictures. That way the teacher can keep it all year if he or she chooses. The scrapbook is a fun, positive way to let them know about Niko’s like and dislikes. This is where I discuss his personal triggers. “Niko is terrified of loud noises. He has OCD and will repeat things incessantly. He thrives on a schedule and repeating it to him will calm him.”

I also give them a folder on Williams Syndrome so they’re aware of the condition. Most haven’t heard of it. I take care not to overwhelm them with lengthy, difficult information, but give them a general overview so they’re not paddling in the dark.

An example of a scrapbook.

An example of a scrapbook.

 

4. Set your child up to succeed.

What do they personally need? Niko has difficultly with buttons, latches, and anything with fine motor skills. Doing the hook and eye on his school uniform shorts is nearly impossible for him. I bought him elastic-waist uniform shorts so he can pull them up and down easily without help. What can you, as a parent, do to help your child be as successful as possible? Pack a lunch with a certain cup that he or she can use without help? Have him wear only navy shirts because that’s the only school uniform color that doesn’t panic him? There’s pressure to have our children fit in. If everybody is wearing the red shirt, maybe we want them to wear the red shirt, as well. But if it doesn’t benefit our kiddos, then it isn’t worth worrying about. Make them comfortable.

 

5. Send in soothers.

What calms your child down when he or she is upset? Niko is soothed by movement, so we bought an inexpensive rocking banana chair and donated it to the classroom. (After asking permission, of course.)  He also does well bouncing on an exercise ball. If he’s hysterical, wrapping him in a blanket and rocking him helps. He also has one specific music album, Sufjan Steven’s “Illinois” album that seems to reach him when nothing else will. We sent in a CD for the classroom CD player, and also loaded it on an iPod for him with earphones. Give your child’s teacher all the help and tools that you can.

 

6. Don’t assume the school has all of the information it needs.

Wearing the bus harness

Wearing the bus harness

If your child needs to take medicine at school, make sure everybody knows. Niko wears a harness on the school bus so he doesn’t wander around and get brought home by the police.  Even though the harness is in all of his transportation paperwork, the bus driver never seems to have that information. When I talk to them before the first run, I make sure to tell them about the harness so they have the bus’ half of the harness installed. Don’t be afraid to speak up. Things get lost in the shuffle. Don’t feel that you’re being nagging or annoying. You’re just being a good parent or caregiver. :)

So those are six things that I’m doing to help Niko begin the terrifying world of Middle School. :P I’ll admit that I’m still a wreck, though.  What tips and suggestions do you have? Please share. And best of luck this school year to you and your little one!

 

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zombiepalooza

Hang out with the epic Zombiepalooza show! My portion starts an hour into the show, and runs for about 50 minutes. I really had a lot of fun. :)

You can watch the video here.

Jackie and crew really work hard to put together something special. Thank you so much, you guys!

 

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Williams Syndrome Awareness Month

Most of you are familiar with the fact that my 11 year old son has Williams Syndrome. It’s an exceptionally intricate genetic syndrome that affects so many things about him. His heart. His mental capabilities. He’s going to middle school next year and he doesn’t have the dexterity to manipulate a button. But he loves. Oh, how he loves!

I posted about WS here and here and here.

If you or somebody you know has been diagnosed with Williams Syndrome, or you’re just interested in our story from the beginning,  you can read my WS blog, A Peeko At Niko.

And, as always, there is wonderful, wonderful information at The Williams Syndrome Association.

Have a wonderful May, everybody!

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It’s true, I am a nerd, but today we’re talking about the Following the Nerd Podcast. My dear friend Jay Faulkner (who once wrote an introduction describing our bromance on my “Let It Fall” guest post on his blog for Rare Disease Day) interviewed me for his radio show in Ireland. It was so much fun! If you’d like to listen, you can hear it here, or if you’re an iTunes fan, you can listen here. Episode 88. I arrive at around the 24 minute mark, or so. We discuss being professional, putting together a short story collection like a music album, and The Stabby.

So there’s a post on coping with a disease diagnosis and a giggly interview. Light or dark, take your pick. :P

Happy Sunday, my friends!

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We’ve been hit by a plague that took us down one by one. I spent two days in bed, physically unable to get out. The kiddos dropped like flies. So did my husband. We were attacked by Pestilence Pony.

Littlest is currently in the IMC unit at our hospital with pneumonia. They’re having difficulty stabilizing her oxygen levels and her heart rate. When the Yardleys do something, we do it BIG. Yay, overachievers!

We’re hoping for a release in two or three days. She’s still playing. Sitting on my lap and being snuggled. It’s a little scary but we’re in high spirits.

 

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I’ll admit that it was difficult at first. I hate hospitals. I walked into the room and my first thought was, “I spent so much time in here with Niko.” The treatments. The tubes. The nebulizers. My next thought was,  “The last time I was in a place like this, we lost the girls.” There was a wash of emotion that I battled for about an hour. Then things were all right. They usually end up all right. :)

My husband threw together a hospital bag for Lil and I. He’s gotten really good at it over the years. I was delighted to find that this bag had my blanket in it, my Jack Skellington plushie, some Coke Zero, and chocolate covered pretzels. Oh, and my ukelele. Can’t forget that!

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My friend ran over three days of dinner to my family, then came and sat with me for hours. She brought flowers and a Hello Kitty doll for Lil. Things are scary. But people can make it so much better. So thanks, everybody. Soon we’ll be out and all will be well.

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Las Vegas Book Festiva;

 

The Vegas Valley Book Festival was fun! A lot of people came out. We represented the HWA, sold a few books, and I drank a LOT of Diet Pepsi. But my favorite part?

Once upon a time, when Niko was a little boy, we were on the dialysis floor. He wasn’t having dialysis himself, but received a pamidronate treatment to help his calcium levels go down. While we were there, I found the most charming, hilarious book on the waiting room table. It was Walter Dean Meyers’ The Dragon Takes a Wife.

The Dragon Takes a Wife

It is one of the best children’s book I’ve ever read. Clever. Original. The fairy, Mabel Mae, has a beautiful afro and uses 1970’s jive talk. I loved it so much.

I wanted to steal it from the Seattle Children’s Hospital, but, alas. I thought that would be in poor form.  It’s out of print, but I tracked it down and bought an old copy from a library.

Walter Dean Meyers was reading at the festival, and I sneaked in to listen. Fantastic. I had brought my ragged, shredded, tattered copy of The Dragon Takes a Wife, and my friend X asked Meyers to sign it for me. I was all giggly.

Walter Dean Meyer

That was my favorite part of the entire festival.

Do you have a children’s book that means something special to you? Can you tell me about it?

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