And it’s beautiful. This is my son, Niko, now 14 years old.
Comfortable? Not at all. Necessary? Absolutely.
It’s something that my husband and I have discussed for a long time. Niko is friendly, gregarious, and just as apt to sit on somebody’s lap now as he was when he was two years old. Kisses from a toddler are darling. From a teenager who can’t read the situation? Not so much.
And that’s just hugging and kissing. Growing up in Las Vegas presents a whole new set of challenges when it comes to sexual situations. I’m sure you can imagine.
I’m glad to be taking the class, but I have to admit I’m doing it with gritted teeth and a fearful heart. But we can do difficult things.
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.
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.
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.
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. 🙂
My son Niko, who has Williams Syndrome, has a few fixations, Washers and dryers, for example. Listening to the same song over and over. Hotels and buses.
About six months ago, we promised we’d go on a public bus in November. He’s been looking forward to it for months, and has asked about it several times every day. (Anybody familiar with Williams will be familiar with the constant asking and reassuring about future activities.) Since today was Veterans Day and everybody was home from work and school, we decided it was a wonderful time to spend together as a family and enjoy the safety our military has fought for. Thank you so much for all you’ve done, Veterans. We appreciate it so much.
We spent $20 on tickets for all five of us, chose a route that would take us to the airport and back (he loves planes), and piled inside.
The ride down took about 50 minutes. Then we rode escalators and elevators at the airport for another 45 minutes or so until it was time to climb on the return bus. The kids were good that a stranger even stopped me to say how well-behaved they were. That hasn’t happened before. Thanks, kind sir! I’ll take it!
It was an out-of-the-ordinary holiday celebration, but it was something very dear to our family. The kids are already asking when we can do it again. It might be a new, strange Yardley tradition. The Great Veterans Day Bus Ride.
I hope you enjoyed your holiday and had a chance to be with the people you love. I sure did. 🙂
My daughters are members of Frontier Girls, which is similar to Girl Scouts. They earn badges, do activities, and apparently surprise their mother.
This summer Niko and I came to two meetings and taught the girls about Williams Syndrome. We shared this short video.
We talked about several of the WS characteristics. The girls asked Niko and I questions. It was exceptionally sweet. And then the Williams Syndrome badge was created. Girls all over America can now earn this badge. The troop all received the badge at their Court of Honor, and Niko and I received a special surprise.
Our Troop Leader wrote about it and it was sent out in the Frontier Girls August Newsletter. Once again. it brought me to tears. Please take a second to read about how two very dear things came together for me.
Have a wonderful day, all. Do something kind for someone else. ❤
Sweet Wes is very dear to me. He has Williams Syndrome like my son, and is in desperate need of a transplant. I applied to be a donor myself, but was unable to be considered because I’m diabetic. There were many, many bitter tears that night. However, they just found a match (YAY!) but need to raise some funds very quickly in order to help him. Any little bit helps. Also, would you mind sharing the link? Thank you so much!
You can read about Wes (his given name is Wade) and donate here.
Wade Edward Sparrowhawk Smith, known by family and friends as Wes, is a wonderful, happy little eight year old boy. Wes was born in April 2007 with the genetic disorder Williams Syndrome and without his right hand. At the age of three months, Wes had open heart surgery to enlarge his pulmonary arteries and repair a valve in his heart. Over the years Wes has struggled with various developmental delays and did not walk until just before his fourth birthday. Despite all of his challenges he has remained a shining light of joy to everyone who knows him. His upbeat personality, ready smile and infectious laugh have captivated all who know him.
In November of 2011, after a weekend visiting friends and horseback riding during Thanksgiving break, Wes was struck down by sudden onset kidney disease—Focal Segmented Glomerular Nephritis (FSGS), collapsing form. After seven months of treatments and despite repeated hospitalizations as well as outpatient treatments, Wes’ kidneys have all but stopped functioning. Now, Wes needs a live-saving kidney transplant. Research has found that with FSGS there is a better chance of survival if a transplant can be done before needing to start dialysis. Wes must receive a transplant we hope that match can quickly be found!
UPDATE: April 2015 – Wes was hospitalized March 30th and has gone into complete kidney failure. After two surgeries, Wes was given a temporary hemodialysis port and a peritoneal dialysis port. While waiting for the peritoneal dialysis port to heal, he was started on hemodialysis. With the exception of one weekend break to home, Wes spent three weeks in the hospital transitioning from hemodialysis to peritoneal dialysis. He is now home receiving daily peritoneal dialysis treatments. Wade, our son Wes, cannot live without dialysis and without a kidney transplant, he may never have the opportunity to live a normal life, or to even live.
Even with insurance, Wes’ transplant and care is going to be extremely expensive. He has undergone the transplant evaluation at the Children’s Hospital in Pittsburgh. Along with the travel and relocation to be near the transplant center, there are also co-pays, deductibles, doctor visits, and the costly anti-rejection medications he will have to take for the rest of his life. All of this presents a challenge we cannot meet without your help.
In order to ease the financial burden, a fundraising campaign in Wes’ honor has been established with HelpHOPELive (formerly NTAF), a nonprofit organization that has been assisting the transplant community for nearly 30 years. All donations are tax deductible, are held by HelpHOPELive in the Mid-Atlantic Liver Transplant Fund, and are administered by HelpHOPELive for transplant-related expenses only. Please consider making a contribution.Thank you for your generosity and support.
Mel Charlton-Smith (Wes’ mom)
This is my beautiful, guileless son, who has Williams Syndrome. He’s crying in the bathtub after I told him his behavior wasn’t up to par and he wouldn’t earn a trip to McDonalds unless he improved.
His emotions are always so close to the surface. He wants to do what’s right, and he tries to please. He spent the rest of the morning giving me kisses and proving how good he could be.
We have challenges every single day. I drop into bed utterly exhausted at night, every night, and have for the past twelve years. But I wouldn’t change this sweetheart for the world.
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!
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.
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.
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
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. 🙂
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.
I can’t tell you the tears, both his and mine, that have ensued because of new schools.
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.
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.
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!