This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at Atypical Familia (formerly of AutismWonderland).
I once asked a friend if her son knew that he has autism. “No,” she said, “We’re not that kind of family.” I left it at that because I understood what she meant.
Growing up we never talked about my sister’s intellectual disability. My sister’s original diagnosis was mental retardation and on the occasion my mother referred to it, she’d say, “She’s not retarded. She’s just a little slow.”
I can’t fault my mother for not being open about my sister’s disability. My mother’s of another generation. And my sister – who is in her mid-twenties – is quite “high-functioning.” She works part-time, she goes to the gym, she takes the train by herself.
The other day we were out for a family dinner – talking and laughing the way families do. And as my sister was telling me a story, she used the “r-word” to describe something she thought was stupid.
There are times when I hear it, I speak out against it. And there are moments when I let it go. But whenever the word is used in front of my son, I can’t let it go. I will not allow anyone to use the r-word in front of Norrin. I will tell them to use another word.
Hearing my sister use the word upset me and I couldn’t let it go. She used it in front of Norrin. She used a word that degrades herself and every individual with a disability. When I explained to her why I didn’t want her using the word, she apologized. “It’s just slang,” she said.
My sister believed it was slang because she was never taught otherwise. We never talked about the r-word at all in our house.
…however blithe the everyday practice of spicing up one’s speech with the words “retard,” “retarded” and the suffix “-tard” has become? The (presumably) unintended result is still the same. A population of people, who has never done anything to harm anyone, is circuitously targeted and suffers from a trickle-down discrimination that is very real and very painful.
My sister is a hard worker, she is a talented artist and she’s bright. She’s a young women worthy of respect, not ridicule. I wouldn’t want anyone to use the r-word in my sister’s presence and I certainly don’t want her using it.
My son Norrin doesn’t know that he has autism, he is not capable of understanding his diagnosis just yet. But we don’t whisper the word autism. One day, we will tell Norrin he is autistic. It’s not about being a certain kind of family. It’s about teaching him who he is. And teaching him to stand up for himself when he is being discriminated against.
Today is the day to Spread The Word – the annual day to raise awareness about using the r-word. I admire this online movement and those committed to taking the pledge. But awareness needs to begin at home. We need to talk about disability and the words that we use. We need to talk to them about respect for all. We need to talk to them about the weight of their words. Words are powerful weapons and like any other weapon, we need to teach our kids how to use them responsibly.
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Researchers asked 1000 mothers of kids ages 6 to 18 in Belgium and the Netherlands to complete a questionnaire about parenting tactics; 552 of them had a child with autism. Moms of kids with autism were more likely to adjust their approach to suit their children’s needs. They were also less controlling than other parents—yet more involved in problem-solving for their kids.
The results may come as no surprise to autism moms or to mothers of kids with other special needs. My son, Max, has cerebral palsy, and I’ve had to experiment to find the right discipline tactics. For years, Max didn’t yet cognitively understand a lot, and so threatening a punishment had no effect. Often the best approaches I found was to praise him for behaving well. When he said “No” instead of screeching in frustration, for example, I’d say “That’s great that you are using your words!” (Positive parenting also works well on feisty “typical” 9-year-olds who may or may not be my daughter.) What’s also worked for us in terms of setting rules is having a reward system in place. Max knows that if he finishes his homework, he is allowed to watch one YouTube video of fire trucks, one of his fascinations. Fellow blogger Lisa Quinones-Fontanez of Autism Wonderland finds it helpful to have a list of house rules (including “Walk nicely—no running” and “Listen to Mommy and Daddy”) that she can point to and go over with her son.
Recently, when Max refused to stop stomping his legs against the floor as he watched TV—a habit he developed months ago that showed no signs of abating—I decided to let him deal with the consequences. One framed photo had already fallen off the wall and broken, as a result. Then it happened again. This time, Max wailed for a long time. ”I’m sorry!” he said, again and again. And you know what? He’s stopped stomping.
Parenting and disciplining kids with special needs has its special challenges. And yet, in many ways, it’s like parenting any kid: You have to adapt your approach to suit your child.
Dads running sports teams in which their kids participate is nothing unusual. A father who starts a sled hockey team for youth with physical disabilities is. Meet Bill Greenberg and his son, Sam, who’s 10.
Sam was born with a birth defect of the spinal cord, leaving him paralyzed below the waist. Several years ago, his dad launched the Wheelchair Sports Federation New York Sled Rangers, a group of 24 disabled athletes ages 5 to 23 in New York City. “When we began playing, none of the kids knew that they could play competitive sports,” Bill says. “And none of the parents knew that their kids could play competitive sports.” Here’s information—and inspiration—from him.
When did you get the idea to do the sled hockey team?
The sled hockey team had been on my mind for several years. When Sam was about 5 years old I was casting about for things that I thought he could do. Somewhere along the way I found an email address for John Hamre of the Wheelchair Sports Federation. John put me in touch with the wheelchair basketball people and the sled hockey people. We went to see the basketball guys first; they were very nice, and they invited us to a practice, and to a night at Madison Square Garden where they put on an exhibition at halftime. It was cool, but Sam didn’t really like it very much. Then we went to see the sled hockey people. I thought it would be like the basketball, that we would watch and play around the margins, but I had no idea that Sam would skate that night. As soon as we walked in, there was Victor Calise [Commissioner at New York City's Mayor's Office for People With Disabilities] and he held up a kid-sized sled and asked Sam if he wanted to skate. Sam was mesmerized. He didn’t even speak, he just nodded his head up and down. Sam skated for two hours that night.
At the end of the night, I asked how we can stay involved and Vic put me in touch with a local kids team called The Rangers that played out of Woodbridge, New Jersey. Sam and his able-bodied brother, Max, played on that team for three years. Vic and I remained in touch, and we became friends. We talked during those years about how we could get enough kids to have a New York City team. I kept telling Vic that if he could get the kids, I’d manage the team. Finally, in the spring of 2012, we felt like it was time to try. We had about eight kids that we thought were committed to trying it out. Now we are 24 kids, with six more who are going to try it out in March.
What was it like for Sam to get out there on the ice, for the first time?
He loved everything about it. He loved putting on lots of big equipment. He loved going fast.
And what was it like for you, as Sam’s dad, to see that?
I had intellectually known and believed that there was plenty of opportunity for Sam to be active. In fact, when Sam was just a few months old and my wife and I were learning that Sam was disabled for the first time, one of the doctors said to us “I’m sorry to tell you this, but your son is not going to be a professional soccer player.” Even at the time, I understood that to mean that being a professional soccer player was the only thing that was not an option for him as he got older. And not only that, but it’s not an option for 99.99% of the population, so it’s not even a big loss to have that option taken away. What has been most interesting and comforting has been meeting and befriending people like Victor Calise and some of the other adult Sled Rangers, so I can see what the life of a disabled adult looks like, and that helps me be a better parent to Sam.
What sort of changes have you seen in Sam, and other kids on the team, since you started it?
It’s so easy for physically disabled kids to be left behind. Sam can be having a nice time with his friends, eating lunch or talking, and then all of a sudden they are off, running around, up the hill, on playground equipment, and Sam is left behind. It’s heartbreaking. But I have seen him talk to his friends about sled hockey. When Sam wheels into his classroom, and he tells his friends that he is a hockey player, I can see it changes the way his friends look at him and treat him. And that has an impact on how Sam thinks about himself. I have most definitely seen the change in other kids.
The most common thing that other kids say is how much they enjoy being on a team. Not just being part of a team and being different, but being a real integral part of a team with other kids like themselves. On the night of our first practice, Spencer said, “Mom, I’m finally on a team!” Francisco said, “I never imagined that I could be involved in anything like this.” Emma commented to me about how she used to play kickball but her friends would treat her differently and give her free trips to first base. She was on a team, but not really. This is different. And it’s not just about the kids, the parents are just as amazed. Edward’s father said, “I never thought that I would see my son, on a team, playing sports.” Te’s dad said, “In all my years of parenting, nothing has brought me more joy and satisfaction than hanging out with the Sled Rangers.” We are absolutely changing perceptions, increasing independence, self-confidence and self-esteem. We are literally changing lives.
You mention that Sam turned out to be the most athletic of your three children. Tell me a little bit about that.
I’m not very athletic and my other two kids are not, either. It’s just ironic that Sam enjoys sports and he is disabled. Before I was involved in the disability community, I was vaguely aware of wheelchair basketball, and I had seen the movie Murderball, but that’s about it. Now I see how important it is for all disabled kids to be involved in something, anything, active. Just because they are disabled doesn’t mean they have to sit inside playing video games. Vic taught me that, and another coach of disabled athletes, Jimmy Cuevas, also taught me that. He runs a fantastic adaptive track and field program out of Bayonne, New Jersey, and Sam participated in that for two years.
How have you raised funding?
We have gotten by with small grants up till now. The Challenged Athletes Foundation (CAF) has generously sponsored some of our players and paid for sleds and equipment for many of them. My old employer, UBS, gave a reasonable grant. Some of the other parents on the team have had their companies contribute some matching funds. The UJA has given. Most significantly, I hosted a fundraiser at Bryant Park on February 5th. We had about 300 people there despite the weather. You can see photos of the event on our website.
You can also find on our website a copy of the video that we showed at the event. It was made by John Cole, the father of one of our players. I am utterly blown away every time I watch it. It perfectly captures the tone of what we are doing and what it means. It’s three minutes long and if you have three minutes to spare, I would highly encourage you to watch it. I didn’t make it, and so I think I’m being unbiased when I say I think it’s profound. You can see it here.
Many parents want their kids with disabilities involved in sports, but don’t have programs like this in their areas. What’s your advice for those parents?
I think an equal problem is that programs exist but parents don’t know. We need to get the word out, to raise the profile of disabled sports in general, to start to change the wider culture and perceptions and awareness of what disabled people are able to do. Like so many areas of life, I find that if there really aren’t programs, if there really isn’t an opportunity, then nobody is going to do it but you. Obama said when he was first elected (and this is not a political statement), “We are the people we have been waiting for.” There is no such thing as “they.” It’s only “us” and sometimes that means “me.”
What is one of the biggest misconceptions you feel that people have about kids with disabilities?
Oh, there are so many. I still get, “What’s wrong with him?” I usually answer “nothing” but that makes people confused. People are afraid of disability, they think either that Sam is helpless and are saddened (“Oh, poor thing”) or they don’t believe that it’s permanent (“Science does amazing things”). Another one I get and don’t like is, “Oh, since he was paralyzed from birth, he doesn’t know any better so that’s OK.” I think people say these these because they think they make me feel better, but it’ really to make themselves feel better.
As I said before, we have to raise awareness. We have to have more disabled people out in public, in plain view, on the streets, on the buses, in jobs, on the field, on the ice, everywhere. So much of accessibility, I find, doesn’t cost any extra money, it just requires people to think and plan. The way to do this, I am convinced, is to be out there as much as we can, showing the world what we can do.
By the way, this is the first year the networks will be covering the Paralymics on TV.
Bill is looking to expand his team, so if you are in the New York City area, be in touch at firstname.lastname@example.org—it’s totally free to join.
This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.
Before I was a mom and before my son, Norrin, was diagnosed with autism I used to side eye the mothers who had their ‘too big’ kids stuffed into the seat of a shopping cart. I thought the kids were lazy and assumed the moms had no control. Now I know better.
I remember what it was like shopping with Norrin when he was younger and first diagnosed with autism. If I were with my husband, it was easier. If I was by myself, I’d either hoist him up and squeeze him into the shopping cart seat (knowing he had exceeded the limit) or struggle while shopping, holding his hand and navigating crowded store aisles.
Even now, at eight years old, we hold Norrin’s hand or stay close by. And those few seconds if/when he runs away and out of sight and I’m yelling his name scanning the aisles, are agonizing. I wish he could still fit in a shopping cart seat so that I can run in and out without me having a heartache or him a meltdown.
The moment I saw Caroline’s Cart in my Facebook feed, I knew how important it was for special needs families. The cart was specifically “created for special needs children. It provides parents and caregivers a viable option to transport a child through a store while grocery shopping, without simultaneously having to maneuver a wheelchair and a traditional grocery cart.”
Some of the features of Caroline’s Cart includes:
The seat back has a five degree tilt for increased comfort for low muscle tone children
The seat faces the caregiver, so eye contact is easy to maintain, children with anxiety issues can watch the parent during the shopping trip, and children prone to seizures can be monitored
The platform below the seat provides a footrest for the child
An abductor in the seat helps keep the child upright
A harness helps to secure the child so parents have hands free to steer the cart and shop
While Norrin doesn’t require the use of a wheelchair, we could still benefit from Caroline’s Cart. Sometimes shopping can be overwhelming for kids with autism. Stores are sensory overload – people talking, kids crying, loud speakers crackling, shopping carts banging into displays. Caroline’s Cart would be especially helpful while at check out. It can be difficult to keep an eye on Norrin while I’m trying to unload my purchases and pay.
Two sisters won the Jamfest Dance Super Nationals this past weekend in Covington, Kentucky. That’s pretty cool, but their story gets even better. Gracie Latkovski, 9, has cerebral palsy and cystic fibrosis, and dances in a wheelchair. Her older sister, Quincy, started the performance in a wheelchair, then she stood up and twirled around the stage with Gracie to the song “Reflections.” They won out over 4500 dancers from around the country. Here’s a video of the routine they did (from another performance):
The girls have been dancing for years at a studio; Gracie started at age 3. People have called the dance “heartwarming” but it’s so much more than that. The girls’ grace and emotions shine through in the video—talented dancers, both of them. Said Gracie, “I love dancing and want to show that I can do anything everyone else can because I believe in my dreams.”