When the Barista Asked What My Son With Special Needs Has

By Jill Zane

I stopped at my usual morning iced coffee place, and as I was paying for my caffeine, the woman behind the counter asked what Caden has. She asked because I was wearing my Team Caden shirt — a shirt I wear with pride as often as possible, a shirt that has raised money for other children who are medically fragile.

I stuttered over my words. She was the first person to ever just ask me that. “What does Caden have?” There was no one word answer, no specific diagnosis. So there I was spatting off a bunch of symptoms as the line behind me began to grow. I could tell she was sorry she asked. But she did, so I felt she needed to know.

After I listed a bunch of medical terms I’m sure she didn’t understand, I thanked her for asking me. I appreciated the fact that she wanted to know what was wrong with my son. All too often people avoid the topic of Caden or just look at me with those “I feel sorry for you” eyes, or they possibly even turn away.

As I continued my drive to work, I thought about what my son might say if he could. I envisioned him relaying a message for all who had no voice, for all the children the world does not understand, for all those who are “different.”

What he would say:

Please do not feel sorry for me.

I know it’s hard not to because I can not do the things others my age can do. I can not sit up, walk, talk, run or eat, but I can feel. I can feel the breeze on my face and the warmth of the sun. I feel the love that surrounds me, the touch of my daddy’s whiskers as he kisses me, my mommy’s heartbeat as she rocks me to sleep. I hear my brother and sister’s conversations and smile when they mention my name because I know they, too, love me. I may not be able to do the things I want to but I’m lucky because I’m so loved. I know I will always be protected and my mommy and daddy will never stop fighting for me. They take me everywhere and do their very best to give me all of life’s experiences. Because of this I’m luckier than many, so please do not feel sorry for me.

Please do not be afraid to hold me.

I know I have many medical conditions which make my body more fragile than most but I promise I will not break. Holding me is like holding any other child. If you feel comfortable with me in your arms, I will respond positively towards you. You will feel my body move as I laugh. You will see me look up into your eyes with love. I know it may seem scary to you, but I want to be hugged; I need to be held. I want to know that you are not afraid of me. Please ask to hold me next time you see me. My mommy and daddy would appreciate it too.

Please talk to me.

My body may be broken, but my mind is not. I understand you, and although I may not be able to respond verbally, I want to. I have so much to say to the world and the more you talk to me the more I will learn so maybe someday I will have a voice of my own.

Please don’t talk to me like I’m a baby. I know that it’s hard sometimes because I can only do the things a baby can do, but I’m a little boy, and I understand everything you’re saying. And because of that, please watch what you say in front of me. Your words can hurt me, heal me, scare me or comfort me. They can make me laugh. They can make me cry. Your words can give me strength or break me down. So please speak positively to me, encourage me and let me know you love me.

Please let your children play with me.

I’m not contagious. You can’t catch whatever it is I have. So please allow your children to play with me. It’s hard watching other children play without me. Even my own brother and sister play around me and not with me. Although there’s very little my body allows me to do, I can play. I know it’s hard but please try to find a way to make me a part of your world. I want to be able to do all the things you can do and maybe with your encouragement, some day can. Please don’t walk away when I’m near; walk towards me; hold my hand; try to make me a part of what you are doing. You may be surprised as to what I am able to do.

Please do not be afraid to ask questions.

My mommy and daddy are so very proud of me and always appreciate it when people ask about me. They always say they would rather you ask than walk away. I know it’s sometimes hard to come up with the right questions to ask but that’s OK. I don’t mind if you ask what’s wrong with me. My mommy and daddy know what you’re asking and it doesn’t offend them. What upsets them is when you avoid me or the topic of me. In their eyes I’m a perfect little boy with a broken body. That’s all it is. My body doesn’t work right because my brain got hurt. Otherwise I’m as typical as you or your child. Ask questions because knowledge will open your eyes to who I really am.

Please listen to me.

I know I cannot put words together, but I do have a lot to say. I say it with my expressions, my body and my eyes. If you pay attention, you can understand what I am trying to say. I may be saying “thank you” or “I love you.” Or maybe I am letting you know I’m in pain or am scared. Just like a newborn I have different ways of telling you my needs. Please do not assume you always know what’s best for me. Try your very best to listen to what I have to say.

Please appreciate the little things.

I know it’s hard sometimes and life can get pretty hectic, but please take the time to appreciate the little things. Appreciate your family, your friends and the world around you. Enjoy the beautiful sunrise, the sweet smells, and those perfect days. I know I do because I never know where I will be tomorrow. I’ve missed too many seasons and too many memories because I’ve been in the hospital. I’ve watched too many friends like me pass away. Life is so precious no matter who you are or how you live it. I may be limited with what I can do, but I know how very lucky I am. I’m lucky to have a family that loves me so much. I’m lucky because I was able to go to school today rather than lay in a hospital bed.

Yes… today, I am one very lucky little boy.

This post originally appeared on ‘Cause Caden Can.

U.S. parents report rise in children with mental, developmental disabilities.

“Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.” –Fred Rogers

A new study published puts its finger on the pulse of childhood disabilities in America. The overall trend: mental and developmental disabilities have become significantly more prevalent in the last decade. But just as interestingly, there are different narratives emerging for richer and poorer families.

On Monday, the Associated Press reported on the findings of the study, which involved nearly 200,000 children. Parents reported on chronic conditions in their children, from birth age to 17 years old, between 2000 and 2011.

From the AP article, some of the numbers:

Overall, disabilities of any kind affected 8 percent of children by 2010-11, compared with close to 7 percent a decade earlier. For children living in poverty, the rate was 10 percent at the end of the period, versus about 6 percent of kids from wealthy families.

The overall trend reflects a 16 percent increase, while disabilities in kids from wealthy families climbed more than 28 percent, the researchers found. The trend was fueled by increases in attention problems, speech problems and other mental or developmental disorders that likely include autism, although that condition isn’t identified in the analyzed data.

What we’re taking away from this: poverty continues to be an aggravating factor for disabilities of all types. A lack of access to therapies, equipment and other basic resources makes a disability a much scarier obstacle for a poorer family. It’s not just about money, it’s about time: taking critical time off work to drive your child to the doctor, or finding the resources to seek treatments.

It’s a reminder to us that our mission is essential. By stepping in to pay for equipment, or to do the legwork to find those resources, we remove a crushing burden from parents in addition to securing a better future for their child.

Likewise, even better-off families need a helping hand. As a nation, we’re seeing an incredible rise in developmental disabilities ranging from autism to ADHD. The study found this surge to be the most prevalent in wealthier families.

Seeking answers as to why, this article from Philly.com posits that it’s a growing awareness and increased access to online information that leads parents to diagnose and then seek treatment for their children. (It should be noted that Variety works extensively with children with autism and other developmental disabilities).

On a positive note, the study also found a significant drop in childhood physical disabilities: about 12 percent, which researchers chalk up to declines in asthma-related problems or childhood injuries. We’re hoping that as the medical field grows to understand the mechanics behind the autistic spectrum, we can turn the tide and see similar drops!

It’s More Than Convenience to Me

By Jill F. Bamber, CTVI, MEd, MOM

Let me introduce myself. I’m that lucky mom who gets to use those convenient parking spots right in front; you know, the ones that are often empty and right by the door. But you see, parking there is more than convenience for me. I have a son who is disabled.

That spot puts us close enough to the door that my son can use his walker and walk in under his own power (independence is important, you know, and his favorite line is “I’ll do it on my own, Mom.”). Other days, we do need to use his wheelchair. Then distance isn’t as important, but extra space is needed. You see, my son’s muscles are spastic and get very tight. He doesn’t bend easily so in order to get him in and out of the car, the door has to be open all the way, whether he’s walking or riding. This is a huge part of the reason that there is that extra “dead” space between disabled parking spots. That extra space is really needed and besides, they aren’t quite as wide as a parking space. When you sneak into that spot for a quick pick-up, you are actually preventing the use of the two disabled spaces on either side; it’s as if you’ve parked in 3 parking spaces.

You are right; it is incredibly convenient to park up front. I can see my other child walk all the way to his coach without going far from my car. But then again, it’s more than convenience to me. If I have to go in with my other child or park elsewhere (I have to go way far away from other cars, remember, my doors have to open up all the way), I have a choice to make… am I going to unload equipment, unfold it all, and snap it together only to do all this in reverse when I return just a few minutes later, or am I going to bite the bullet and just carry my son in. Have you ever bought the economy-sized bag of dog food at Sam’s Club? It is 37.5 pounds of dead weight. It doesn’t help you carry it; it can’t wrap its legs around you and hold on. Well, my son is 55 pounds and growing every day. You would probably frown upon me if I slung him over my shoulder like a bag of dog food, but he too is dead weight and a large load to carry on my mommy frame. I’d carry him to the ends of the earth if I had to, but, frankly, I’d rather not.

My son would give anything to be out there playing with his siblings, his friends, and your child. Due to his disabilities, that will never happen. He loves to cheer from and follow along the sidelines. He dreams of the day that he can cross that white line and join the game. Every game he asks, “Today, can I play with my friends, too?” I would give anything to say yes, suit him up, and yell, “Hey, Coach, he’s going in!” I would give anything, including those special tags and that up front parking space. You see, it’s more than convenience to me.

Increasingly, Parents Push For Inclusive Playgrounds

By AIMEE BLANCHETTE, MINNEAPOLIS STAR TRIBUNE/MC Originally posted in the Disability Scoop

Four-year-old Lucas Dean has to have three things when he goes to the playground: long pants, Mickey Mouse gardening gloves and lots of energy. He needs them to crawl through the rough wood chips to reach the slides, stairs and swings. Lucas, who was born with spina bifida, moves swiftly in his purple wheelchair. But he can explore the playground near his suburban Minneapolis home only on his hands and knees.

“There are all kinds of things for kids in wheelchairs around here, but the playground isn’t one of them,” said Lucas’ dad, Jay Dean. “I want to get involved and change that.”

Admittedly, playgrounds have been adding accessible features for decades. But a lagging economy has put many local governments and park boards in survival mode. Special swings and adaptive rides are expensive, and ramps and smooth surfacing can add thousands of dollars to a budget.

Because of the costs, inclusive playground projects often end up being a collaborative effort among families, communities, schools and cities.

“An inclusive playground is on our dream list, but it always comes down to money,” said Shannon Young, recreation supervisor for South St. Paul, Minn. “If there was a group of people who had the mind-set to push forward and fundraise for it, we would welcome that.” Already, at least a dozen playgrounds with several inclusive features are in various stages of development in the Twin Cities area alone.

Wood chips and rocks are being replaced by wheel-friendly rubber surfaces. Giant spinners offer balance stimulation and interactive play. There are quiet places where kids who are easily overstimulated can hide out, and roller slides and sensory gardens for kids with sensory disorders.

Sometimes it’s not a parent with a child with a disability who’s drumming up support, but rather someone in the community, such as Peggy Halvorson, who believes inclusive playgrounds “are just the right thing to do.” “I don’t have a child or grandchild with a disability,” said Halvorson, an activist who worked with the advocacy group People for Parks to build the first universally accessible playground in Minneapolis, scheduled to open this summer. “It was an unmet need in our community… I want my grandchildren to grow up learning to look at their peers’ abilities and not being fearful of someone who is different from them.”

Federal law requires that play areas be accessible. That means if a city builds or renovates a playground, it must meet certain standards under the Americans With Disabilities Act.

“The issue, though, has been that the guidelines really only address physical accessibility,” said John McConkey, markets insights manager for Landscape Structures.

ADA guidelines for playgrounds don’t address a broader range of diagnoses and disabilities, such as autism and sensory processing disorders. To be truly inclusive, McConkey said, a playground needs to be fun, functional, stimulating and interactive for everyone — from children with disabilities to their siblings, parents and grandparents.

In the past five years, the playground equipment company has hosted focus groups with parents of children with special needs to find out what makes for a positive playground experience.

“We were shocked to learn that these parents didn’t take their kids to the playground at all,” McConkey said. “Playgrounds were not designed to support their kids’ needs. There was a huge gap in playground design.”

Suzanne Sullivan lives across the street from a park in Edina, Minn. but doesn’t use the playground because she can’t wheel her 8-year-old son Dermot’s wheelchair through the wood chips. Although the playground is ADA-compliant, “it certainly isn’t inclusive,” she said. “I’m so sick of sitting on the bench watching my other kids play while Dermot just sits there with me.”

Sullivan found a playground with a wheelchair-friendly rubber surface this spring and has been driving her three sons there to play. She also contacted the city of Edina to inquire about replacing the playground across the street from her home. The city encouraged her to raise money for such a project, so she created a fund through the Edina Community Foundation and is now in the early stages of fundraising.

After Dana and Dave Millington’s daughter Madison died of complications from spinal muscular atrophy, the Woodbury, Minn., couple decided to start a foundation to raise money to help families in similar situations.

Building an inclusive play space became the foundation’s focus, because going to the playground is an activity every kid should enjoy, Dana Millington said. “The option was to either leave her alone on the side or go help my 2- and 4-year-olds, or let them roam by themselves and stay with her,” she said. “My older two kids couldn’t establish those memories with her… that most siblings and families get to build.”

Through the Madison Claire Foundation, the Millington family has spent the past six years planning a playground and raising funds.The foundation is raising money through corporate sponsorships, “American Idol” finale parties, a Roaring ’20s gala at an area historic mansion, golf tournaments and other events.

The foundation has raised $831,000, half of the money for the project and hopes to raise more through other means to allow the playground to break ground soon.

Though expensive, there is no price tag for providing kids with play areas where they can grow up together, Page Laska said.

Laska, who lives in Woodbury, said an inclusive playground would give her 9-year-old son Ben independence. Ben, who has spinal muscular atrophy and uses a wheelchair, is missing out on crucial bonding time with his buddies. “This is so important, and it’s so important right now,” she said. “I know we’re going to get Madison’s Place, but we all want that someday to be today.”