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Posts Tagged ‘Williams Syndrome’

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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Niko

My son is absolutely beautiful.  He just had a growth spurt.  He’s stringing more words together than ever.  He has Williams Syndrome.  He’s such a joy.

The other day he was smiling and touching my eyes.  “Mommy’s eyes,” he said.  His face lit up as he thought about one of his favorite things.  “Hamburger buns.  Mommy’s hamburger bun eyes.”

There has been much sadness lately. My heart feels constantly full.  Full of sorrow, full of joy. It’s the holidays and I struggle with what that means for my little family, for my missing daughters and my sweet son who is confused and frightened by all of the bustle.  But he reminds me what’s important.  I don’t need eyes like stars or diamonds.  Although the world may sometimes harshly judge my son, he doesn’t judge anybody back.  He’s content to roll on his back and point to his Mommy’s Hamburger Bun Eyes.

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One of my goals was to join the Science Fiction and Fantasy Writers of America, or the SFWA. It took a lot of hard work to become a member, and many of my writing goals are still SFWA oriented. For the third stop of the Beautiful Sorrows blog tour, I conrtibuted a post titled “Define Me: The Role of Changelings in Folklore to the SFWA blog. Please stop by and read it! It’s such an honor to contribute to something that I respect so highly.

Also, the very cool and gorgeously lipsticked Rebecca Brown interviewed me on her blog. It’s more Mercedes than you can handle! Since it’s late at night and you’re surfing the web mindlessly, drop by and see her, will you? :D

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Oh, my darlings. My dear ones.  I have been far busier than I have ever been. Last night I laid everything out for my writing group, whose eyes grew wider and wider and I continued without taking a breath.

“And I’m almost caught up on anthologies, but of course I still have the main novel and the book launch and volunteering for Killercon and I’m behind on putting my blog tour together but I have some signings scheduled and then there’s school and Niko’s bus takes him to THE WRONG SCHOOL and tomorrow are cardiologyappointmentsandthenwehaveimmunizations…”

Do you know what my group said?

“They shouted, ‘Mercedes, you’re nuts!'” you shriek with glee. And you would be right, if they were ordinary people.  But, ah, they are quite extraordinary.

They offered to watch my kidlets.  They offered to fill out paperwork if necessary.  They are wonderful, and if it weren’t for Mason, Ryan, and billie, I would be curled up in  little ball about now.  Thank you, my dear, dear friends!

So for a quick update:

Niko’s bus will finally start taking him to the correct school next week.  It’s been crazy trying to drop two children off at separate ends of the city when their schools start 10 minutes apart, but soon it will be manageable!  The cardiology appointment, which I was dreading, was a four hour ordeal, but both Niko and Lilia have good, stable hearts.  What a relief!

The book launch for Beautiful Sorrows will be a wonderful, low-key event  at Killercon.  Not only will I be doing a reading, but I’ll be meeting several friends (and the Shock Totem staff!) face-to-face for the first time. I’m delighted!

I hope you can come.  I also invite you, if you so desire, to help me spread the word about Beautiful Sorrows.  I can’t express how excited I am!  I love the cover.  I love the illustrations.  I love the stories, and the preface made me swoon.  Shock Totem Publications put such care into this book, and it shows.  If you can tell your friends, or surprise them with copies for Christmas, or possibly share pictures of the cover (below), or put the banner above as your Facebook cover (just click on them to bring them to full size)  I would be so pleased! So many trials and tears to get to this point, and now I look around and think, “I think that I am very, very happy.”

 

 

 

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I’ll tell you straight up that he wasn’t missing for long, about 20 minutes, and he was returned safely.  But I died a little during those 20 minutes.  I didn’t know a heart could stop beating for that long and still let somebody survive, because I felt like it didn’t beat again until he was found.

Most of you are familiar with my little boylet, Niko.  He’s nine.  He’s mischevious, and loving, and doesn’t have any guile in his body.  When he’s sad, you know he’s sad. When he’s delighted, you know he’s delighted.  Niko has Williams Syndrome, has been speaking for about two years, and loves to explore more than anything in this world.

He’s a runner.  When we bought our house in Vegas, the main selling point was a beautiful backyard with a six foot high wall that surrounds it completely.  We have three locks on our front door, each one getting more elaborate and placed higher as Niko gets taller and more clever. My parents childproofed their house for my kids.  A door at the top of the stairs, and special locks on every outside door that opens with a key.  The key is hidden over the door frame.  I am touched by every precaution. We’re spending a week with my parents now.

But sometimes we slip up, and yesterday Niko escaped and took off when our backs were turned.  There was absolute horror when I realized that the door was open.  It was about 9:30 at night, and dark.  We live half a block from a main road. Nobody would be able to see Niko in his dark pajamas, and he wouldn’t realize that he would need to dodge the cars.

We spread out.  I stayed at the house because the girls were asleep and I wasn’t going to leave them alone.  My parents started knocking on doors and checking the roads.  Every terrible scenario came to my mind.  I am all too keenly aware of how precious life is, and how brief it can be.  I’ve never taken it for granted.  Do you know what horror is?  We talk about it all of the time.  I read it, write it, and last night I was living it.  A missing child is true horror.

Somebody rang the doorbell. I run outside and there’s my friend Shawn, a guy that I met 20 years ago in junior high.  I haven’t seen him for a decade, but he’s standing on the porch saying, “I have your son.”

I have your son.  The sweetest words somebody could say to a frantic mother.  I feel my heart beating again, but it’s too fast, so fast that it’s making me dizzy.  I shout to my parents that we have him, and to stay with the girls, and then we’re running to Shawn’s house.  He had moved in around the corner, and his house was on the way to the elementary school, where the kids and I had played earlier that day.  I’m sure that’s where Niko was going, but he stopped in at Shawn’s house, walked right inside, said something about computer, washers, and dryers, and headed for the laundry room.  A small boy in pajamas and without shoes, who doesn’t speak clearly and walked right past the two big family dogs.  Shawn’s wife was on the phone with the police, knowing that there were frantic parents somewhere.  Shawn said, “Let me see him.  Oh, that’s Niko.  I know him from Facebook.”

I’m on Facebook all of the time.  I talk with my friends, check out other writers.  I look at pictures and I post pictures.  Pictures of writing events, of cool places that we’ve traveled.  Of my kids.  I’m so grateful that I posted pictures of my kids.

I’m much more grateful that an old friend checked them out, and was able to remember them.  As I write this, Niko is flitting around me, humming songs.  He’s carefully checking out my parent’s washer and dryer.  He slept easy last night, falling into bed without realizing that anything was amiss. My parents and I stayed up for hours, walking around the house and trying to wind down.  You just don’t let go of fear.  It doesn’t just leave you.  It has to be worked out of your system like poison or disease.

Niko is clapping his hands and smiling at me.  I’m so grateful for friends who care, and give me the opportunity to smile back.

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