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.”

There’s just something about that flight.

Once again I sat on a Chicago-bound airplane, about 30,000 feet above the earth, when the tears started flowing. It’s nothing new. I have been crying on that hour-long flight from Kansas City to Chicago for years. In fact, I wouldn’t be surprised if the airlines put me on some sort of ‘emotional wreck’ watch list.

I was pretty comfortable in seat 14-C. My two-and-a-half-year-old precocious daughter sat next to me in the window seat. And across the aisle was Will: my stunningly handsome preschooler. The airlines didn’t put anyone else in our row (again, evidence of ‘the list’). Will sat next to the window so he could lift and lower the shade. His seatbelt remained buckled. He finally gave up trying to push the overhead ‘call button’. Will knows his limits; even with the help of his plastic Iron Man, he was too short. He occasionally kicked the seat in front of him, but luckily the man in that seat was friendly and graciously accepted our (make that, ‘my’) apologies. As Will sat gazing out onto the Midwestern sky… probably over some hard working farmer’s crops… it hit me. He was sitting nicely. Quietly. He was working on some sort of imaginary play. Maybe it just was the fact that his toy raised its arms when he squeezed the legs– more ’cause-and-effect’ than ‘play’– but it kept him busy. It looked typical, ‘normal’. Sitting in 14-A he could be any kid. But he wasn’t. He was, is, my Will. And just like that farmer, he and I have toiled very, very hard to get to this point.

Three years earlier Will and I were on the same flight. Just the two of us. I was pregnant with my daughter, Francie. It was a warm spring afternoon. The airlines boarded the plane late. And then once we were onboard, there was an issue with the air conditioner. An issue that meant instead of cool, refreshing air, hot air was pouring out into cabin. Our plane was not moving. Stuck– for an eternally long moment– on a runway at O’Hare. It started to get hot. Will started to get antsy. Yelling, screaming, kicking. The professionals had not yet diagnosed him as being on the autism spectrum. I just thought that’s how two-year-olds react to being stuck on a runway (thanks to the internet, we know some adults act even worse). But now I know it was more. He was frustrated. Angry. Unable to communicate. Overloaded by an assault on his senses. I walked with him. And it got hotter. The flight attendants– apparently concerned I was going to dramatically give birth on board– kept handing me ice cold paper towels. Will screamed more. The temperature rose. Thankfully, our seats were surrounded by the University of Texas Women’s tennis team. These ladies were funny and easy going. I remember one suggesting that we get my little Will naked so he wouldn’t be so hot. It’s nice to be able to laugh when all you want to do is cry.
Eventually the heat stopped. The cool air started to fill the plane and we took off for Kansas City.

I’d be lying if I said that three years later we have arrived. There’s still more work to do. But I was struck by the sight of my little guy: All of a sudden he’s sitting nicely in his seat, drinking his Sierra Mist with two hands. For that, I raise my glass. A toast to all the professionals who have spent countless hours with him. A toast to my family who has not only adapted to Will and his behavior– but somewhat effortlessly learned how to engage him. A toast to my husband who never once expressed disappointment that his only son might never be able to sit and do typical father-son things stuff. A toast to Will who probably thinks we are all a little ‘off’, but has accepted his ‘neurotypical family’ the way we are. And finally, dammit, a toast to me! There have been times I want to pull the emergency exit and slide off this ride, but it’s my awesome little buddy that keeps me on board. Thanks for coming along on our journey, Leslie

Homework Help for Kids with Special Needs

By: Terri Mauro

It’s normal for a child to hate doing homework, but for children with special learning, motor or developmental needs, that hatred can blow up into tantrums, meltdowns, and endless nag-a-thons. It doesn’t have to be that way. There are ways to make the homework experience less painful for all involved. You may have to insert some of these things into your child’s IEP to get full cooperation from teachers, but it’s worth it. Done right, homework can provide good reinforcement both for facts learned in school and for parent-child relationships.

Find the right place. It’s good for your child to have a regular spot to do his or her homework — anything that adds a layer of routine to a disruptive task will be helpful. However, it doesn’t have to be a desk. Maybe the kitchen table works better, because it’s easy for Mom and Dad to keep the motivation up while they prepare dinner. Maybe lying down on the floor to do homework works best for kids who have a hard time sitting. Even a place in front of the TV can be a decent homework spot if it keeps the distractible part of your child’s brain occupied so the rest can concentrate on schoolwork. Adopt a “whatever works”approach to your child’s homework workspace. And be prepared to change when it stops working.

Organize your technology. There’s a host of items that can assist your child in completing homework with less stress, ranging from low-tech — a piece of paper with a hole cut out so your child sees only one math problem at a time — to high — calculators, computerized flashcards, apps that solve problems and facilitate communication. Check our list of cool school tools for special-needs kids, and visit these online stores for more good ideas. And don’t shut out those other technological marvels your kids are addicted to. Listening to music on an iPod while working can help tune out distractions, and a video game after working can be a motivating reward.

Stay involved. You want to avoid actually doing the work for your child, but that doesn’t mean you can’t be his or her biggest cheerleader. Some kids benefit from small rewards after very small amounts of work done — a cracker as a reward for finishing a row of problems, for example. Others may need constant prompting and refocusing to get through their work. Reading or rephrasing questions for your child can sometimes help the right answer to pop out. There may be times when you will have to walk away to avoid becoming a distraction yourself, but for the most part, it will be beneficial for your child to see that homework is something you value enough to invest your time in it as well.

Make adjustments. Being involved with your child’s homework has another benefit: You can see what’s easy and what’s hard, what’s quick and what’s too time-consuming. Then, work with your child’s teacher to better tailor nightly assignments to his or her particular abilities. Teachers may feel strongly about the benefits of homework, but they usually don’t want it to be a nightly family battleground. Ask your child’s teacher if you can cut assignments short if they’re causing a problem, or skip them on nights when your child is upset or unable to focus. You may also want to have the option of writing down answers for a fine-motor-impaired child if writing becomes too frustrating. Send a note with the homework detailing your input.

Get the straight story. If your child isn’t bringing home an accurate list of the homework he or she needs to do, work with the teacher to improve the situation. Perhaps your child can carry a homework pad and the teacher or aide can check it at the end of the class or the day. The teacher may have a website that lists homework, or be willing to give you an e-mail address so you can make contact after hours if necessary. If your child has a friend in class, get a phone number and introduce yourself to his or her parents so you’ll have someone to call to double-check assignment details. You may also be able to get a set of textbooks to keep at home so your child will always have the materials needed.

Ensure delivery. The best homework in the world doesn’t do your child any good if it doesn’t get into the teacher’s hands. Kids with special needs often seem to have a special talent for losing, misplacing or forgetting their assignments, and that can send a grade rolling downhill fast. Check for yourself that the homework is in the backpack each day before sending your child off to school. Then check with the teacher on a regular basis to make sure it’s reaching its destination. A chart on which the teacher can check off whether homework was done or not might be a useful option. Use the chart as part of your home behavior plan, giving points or a reward if it’s checked, withholding points or privileges if it’s not.