A Different Kind of Christmas Present

Niko, my darling boy, is 13 this year. He has Williams Syndrome, and like a lot of kiddos with WS, he’s difficult to buy for. One year he asked for an escalator, and Santa pulled a few tricks out of his bag for that one. He doesn’t attach to typical things, generally. He doesn’t particularly care about gifts, and that hurts people’s feelings sometimes. They want to express their love through things that he’ll love and value, and unless you’re giving him a dryer or a washing machine, he isn’t really going to care. It’s an aspect of having a child with special needs that we don’t think about until it happen. Christmas isn’t supposed to be a time of ultra-sensitivity and despair. We’re not supposed to feel that gap between us widen.

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So Niko’s main present this year was a stay at the Excalibur hotel here in Vegas. It was a night all about him. We bought his favorite foods, which are grapes and goldfish crackers, and ordered pizza.

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We rode elevators, escalators, and caught Pokemon. Tomorrow we’re checking out the laundry room before strolling over to New York, New York to watch the roller coaster. It will be a perfect day for our sweet son. I’m so glad he has such great little sisters who are willing to support Niko Day. I know it isn’t easy for them to watch him struggle with day-to-day issues, but they’re good kids who love each other.

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There’s something even better. My parents are coming down for Christmas and are inviting him to stay in their hotel with them. He gets to do this TWICE. You haven’t seen joy until you’ve seen Niko jump in the air, laughing and flipping his hands. His delight is so contagious! I can’t wait to see it again. 🙂

Discussing Williams Syndrome with Sarah Chorn

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I introduced you to Sarah Chorn a while ago. She wrote a stunning review for Pretty Little Dead Girls that just touched my heart. But she’s done even more than that! Sarah interviewed me for her wonderful column Special Needs in Strange Worlds, which runs in the SF Signal Magazine. Sarah’s column helps raise awareness for not only diversity in genre fiction, but she specifically emphasizes special needs. She invited me to talk about my feelings of diversity in fiction, and we discussed my son, Williams Syndrome, and how he has influenced my writing.

I thank her so much for the opportunity to discuss something so exceptionally dear to me. Please read it, if you have a chance, and get to know a little more about Niko and WS.  🙂

I was also delighted that the Williams Syndrome Association ran the interview on their Facebook page. That made me so happy!

Preparing Your Child with Special Needs for School

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. 😛 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!

 

The Girl With Hamburger Bun Eyes

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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.

How Facebook Helped Me Find My Missing Son

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.

Is Strapping The Boy Down Really The Answer? Apparently So.

This is my kidlet. He’s nine, he’s frickin’ adorable, he has Williams Syndrome, and he’s unruly on the bus.  He just can’t sit still.  Last year the bus had an aide and that was all that was needed, but this year transportation has gone completely insane.  The budget cuts are astronomical. It’s impossible to get an aide for him; I know because we asked.  Repeatedly.  We were trying to avoid the “Hello, Mama, the police brought me home!” thing again.

This is the answer: A weight vest.

At least, it’s what they call a weight vest, because that definitely isn’t what this is.  A weight vest is, of course, a vest that is weighted.  It can be specially made, or it can be a fishing vest with beanbags in the pockets.  The idea is that the extra weight will make the child feel secure.  And it works, because Niko has used weight vests for years and did very well with them.  This, however, is a harness.

The metal hoops on his shoulders clip to an apparatus that is securely fastened to the bus seat.  There are metal hoops on each skinny hip, as well. It zips up the back and buckles between his legs like a parachute harness.

Oh, he hated it at first! How he screamed! It was absolutely heartbreaking. As time went on, he became more used to it.  I’m trying to do the same.  It’s very nice to know that he’s secure in his seat and that he won’t be running pell mell on the bus, and it’s especially nice to know that the next knock on the door won’t be Las Vegas Metro handing over my little one.  It’s still very difficult to physically strap him down every morning. But that’s life, yes?  Take the bad and celebrate the good.  At least my son is so gosh darn charming!

*UPDATE* I wrote this post a long time ago (hence the coat. It’s a bazillion frickin’ degrees outside right now! A coat? No way!) and we’ve had time to adjust to the harness.  It no longer frightens him, and he actually seems to feel very secure wearing it. It took a few months to get to the point that we’re at now, but with consistency and adding it to his daily routine (“Go potty, wash your hands, and then we put on the harness!” we’re at a great place with it.  I’m glad we have it, especially since he’s been watching youtube videos on learning how to drive school buses.  Dodged that bullet!

So The Police Show Up With My Eight-Year-Old Son…

Sounds like a bad joke, right?  Only it isn’t.  Through a series of miscommunications and things that would be heartbreakingly comic if I was watching it on TV, my son ended up freaking out on the school bus.  So much so that the school police were called.  My car had mysteriously died this morning, my baby hadn’t slept all day and was wailing, my daughter was so disobedient that her head was practically spinning, I was out of Coke Zero (yeah, the no caffeine for a month thing?  Longest month of my life), and then this?

At least the officer was nice.

My son was delighted to be home and buzzed happily around the house, checking to make sure that the microwave, washer, dryer, and vacuum were all in their proper places.  Absolutely no sign of the trauma that had ensued.

I will be driving him for his last two days at school, because on Thursday we move him to an autism classroom.  I’m not sure about his new placement, but his current one is an awful fit.  Obviously, yeah?

My little troublemaker.  Getting into scrapes with the law.  Egads.

Guest Post: “Why I Hate The ‘R’ Word” by N. Paslay

Let me introduce you to my writer friend and fellow Williams Syndrome mother, N. Paslay. She wrote an essay that struck deep into my heart. I’m grateful that she allowed me permission to share her words here. I cringe whenever I hear this word, precisely for the reasons that she so eloquently states. Please, let’s realizes there are consequences to the words that we choose. 🙂

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I have heard people defend their right to use the words “retard” or “retarded” as slang.

“Everybody is so politically correct these days. It’s ridiculous.”

“I don’t mean anything by it.”

“I was calling a thing ‘retarded,’ not a person.”

I completely understand. People can be overly sensitive when it comes to politically correct terms. I know those around me probably don’t mean anything by using this word, sometimes liberally and with great gusto. What you don’t know is that every time I hear this word thrown around in casual conversation, it feels like a knife is being shoved into my heart.

Let me explain.

A few years ago, we were new parents. We sat in a small room in a children’s hospital with our 17-month-old, who didn’t smile or behave like other children. A geneticist sat across from us and informed us that our son was “mentally retarded.” This is not a term new parents are prepared to hear. He even pulled out a piece of paper with a scientific graph on it and used it to explain how mentally retarded he would be. My heart broke as the dreams I had for my child were destroyed. We drove home with this word hanging over us in the car. It was the first time I really considered what it meant.

re·tard·ed (adj.)

1. Affected with mental retardation.

2. Occurring or developing later than desired or expected; delayed.

Slow.

As much as I hated to admit it, that was true. My son hit about every milestone about two years later than most children. I sat in his pediatrician’s office time and time again, answering “no” to every developmental question about our son for years. Because of this, I dreaded each and every visit.

By the time I came to terms with the word in a clinical sense, it was deemed outdated by parents, lawmakers, and doctors and is now slowly fading from even medical literature.

Outside of the medical field, of course, the word morphed into an ugly insult over the decades. This is quite evident by referring to one online slang dictionary.

re·tard·ed (adj.)

An “unofficial” (not recognized by dictionaries) slang descriptor for a person/thing/action/object, etc., or a combination of, which is one or more of the following:

a waste of time, abandoned, abject, abominable, abortive, absurd, afraid, aimless, anxious, apprehensive, arid, arrested, assailable, atomic, awful, baby, babyish, backward, bad, banal, barmy, barren, base, baseless, bastard, beastly, beggarly, behind, beside the question, blah, bland, bogus, bomb, bootless, boyish, brainless, bromidic, bummer, careless, catchpenny, characterless, cheap, checked, cheesy, childish, childlike, clichéd, cloying, coarse, colorless, common, commonplace, confusing, contemptible, contemptible, controvertible, conventional, cool, corn, cornball, corny, corrupt, counterproductive, cowering, cracked, crap, crappy, craven, crazy, crud, cruddy, daffy, daft, dastardly, dazed, dead, deadpan, deficient, degraded, degrading, dejected, delayed, delusive, dense, dense, deplorable, depraved, despicable, destitute, detestable, devoid, diffident, dim, diminutive, dippy, directionless, dirty, disgraceful, dishonest, dishonorable, dismayed, disposable, disreputable, dizzy, dodo, doltish, dopy, dotterel, down, downtrodden, drab, drifting, drudging, dull, dumb, empty, empty-headed, erratic, everyday, evildoer, excessive, exhausted, expendable, expressionless, facetious, failed, failing, faint-hearted, fallacious, false, fanciful, fatuous, fawning, featherbrained…

You get the idea.

When someone uses the “R” word as casual slang, it references part of their very own community. People they may love. People who might be their neighbors, friends, or coworkers. People they have never met standing behind them in line at the supermarket. I once listened to a group of teens with my son’s diagnosis express how much this word profoundly hurts them.

I have heard people say, “But I would never call a person a retard. That’s different!” I remind them that they routinely use this word to describe things that are faulty, defective, or useless to them. Even without knowing it, they are using this word that refers to a group of people who may not be able to voice their hurt or objection — vulnerable people who have been abused, institutionalized, and marginalized for centuries. It seems harmless, but it’s not.

What it boils down to for me personally is that they are comparing something that is inadequate or useless to someone like my child. Although I do not consider him inadequate or useless, the word still stings like hell, because I know exactly where it comes from.

Yes, you can say what you want. I can’t argue with that. I just ask you to think about how the words you use affect those around you, especially young people who have a longer, more difficult road than most ahead of them in this world.

Please.

Something Humbling

I’ve been a blogger since 2005.  I wasn’t blogging about the wonderful world of writing; I was writing about my son.  He was diagnosed with a strange genetic syndrome and it very much felt like we were set adrift after that.  Few had seen the syndrome before.  We were alone.  I started my blog at www.williamssyndrome.blogspot.com because I was standing atop my raft and I was screaming for somebody to hear me.  More than that, I knew the feeling of absolute isolation. If only one person stumbles across my experience and it helps them in any way, then that is what I want.  I would have sold my soul to read somebody’s blog when our diagnosis hit. 

The Williams blog is a much more honest blog than this one can ever be.  “Blah, I got a rejection!” is far less visceral than, “My son is dying today.”  The Williams blog is a blog of happiness and even more so of pain.  I updated religiously for about three years until somebody said, “Hey, I found your blog. My child has Williams, too.”  Somebody finally heard the screaming.

I started this blog in 2008.  I kept updating my other blog as well, because there was a lot to say.  Then I gradually started spending more time here.  I apologised for my long absences on the Williams blog, and I urged them to come here if they wanted to keep their finger on my pulse.  Why?  Because this is my safe, happy place. Because sometimes it’s too hard to write about the struggles that we’re going through, and also because I’m embarrassed.  I’m embarrassed that I can’t always be strong.  I’m ashamed that things in the Williams World have temporarily broken me to the point where I didn’t know if I would ever be able to stand up again.  But look, I’m standing.  We all are.

I received an email the other day.  A mother told me that my blog was her introduction to Williams Syndrome when her child was diagnosed. She said that she read my blog start to finish.  She was my one person, the one I wrote it for.  But the very next day, another mother told me about when she started reading my blog.  I had written about looking for a park with few children so they wouldn’t tease my son as he played.  She said she sat at her computer screen and cried, because she did the same thing.

This humbled me. Greatly.  These women are some of the strongest that I have ever met.  It’s humbling to hear that some of the tiny things that I said affected them. I know that these women have greatly affected me.

My Williams blog updates have become extremely sporadic.  I keep in touch with most of these women via Facebook.  I cry privately to my friends instead of crying publicly on the blog. I spend more time here, in my whimsical little writing world, because it’s easier, quite frankly.  I love the joys and challenges of writing.  And compared to genetic testing and seven years of potty training before it finally took hold (Hooray, it finally took hold!) writing challenges are a breeze.  And the best news is that my son is doing so extremely well lately that I simply choose to enjoy it instead of writing about it.

I’m realizing, though, that simply because our life is taking a delightful turn for the better, that doesn’t mean that other people aren’t still struggling.  It had never occurred to me that I was being selfish by not keeping up the Williams blog, but I realize it’s true. When you child is diagnosed with something scary and seemingly insurmountable, you scour the universe looking for hope.  My son is speaking. He’s holding a crayon. Today he washed his own face.  There was a time that we didn’t know if that would ever be possible.  These are things that I need to write about.

I’m going to recommit to my other blog.  I’m telling you this here because…I’m not sure why.  Perhaps you’ll be hearing from me less.  Maybe you won’t.  I need to figure out how to balance life, family, Shock Totem, writing, and two separate blogs.  We’ll see how it goes. But I wanted to let you know that you feel like family.  And if you ever want to pop over to the Williams blog, you are definitely invited.  Come over and play. 🙂

Resilience and Fragility

 

It’s 1:00 in the morning and I can’t sleep.  I’m working on the Williams project and, quite frankly, it’s hard.  Do I believe in it? YES.  Is it a book that needs to be written?  YES.  But it hurts.  Honesty hurts.

I thought that my piece coming out in the second issue of Shock Totem made me feel naked.  But baby, I was wearing a parka compared to this project!  I want to write authentically, so I’m exploring a lot of the feelings that I’ve tried to put aside.  How it feels to hold your child when the doctor says, “I’m sorry, but I think that you’re going to lose him.”  The way it feels to call your mom up and say, “Mom?  There’s something really wrong with my son.”  He is doing so wonderfully now that these feelings are…I won’t say “a distant memory” because they’re always subtly there.  They pop up now and then at the strangest of times.  But they aren’t as present anymore. I have worked very hard to pack them away.  I used to feel sorrow, guilt, fear, and loss.  Now I feel more determination and sometimes anger.  I’ll take determination over fear any day.

Deciding to wade through this again is extraordinarily tough, but I believe the end result will be worth it.   Forgive my fragility.