This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at Atypical Familia.
My son, Norrin, is eight years old and I try my best to focus on where he is now rather than worry about the future. But if it’s one thing I’ve learned about motherhood is that the years fly by. Eventually Norrin will age out and the special education “safety net” will be lifted. I feel lucky that Norrin’s school goes up to 21 years old but then what? Will he be able to get a job or live independently? Will he have the tools to face the world as an autistic young man?
Those are the questions the critically acclaimed documentary, Best Kept Secret tackles.
At JFK High School, located in the midst of a run-down area in Newark, New Jersey’s largest city, administrators answer the phone by saying, “You’ve reached John F. Kennedy High School, Newark’s Best Kept Secret.” And indeed, it is. JFK is a school for all types of students with special education needs, ranging from those on the autism spectrum to those with multiple disabilities.
Janet Mino has taught her class of six young autistic men for 4 years. They must graduate from JFK in the spring of 2012. The clock is ticking to find them a place in the adult world – a job or rare placement in a recreational center – so they do not end up where their predecessors have, sitting at home, institutionalized, or on the streets.
Last night I had the opportunity to hear Janet Mino speak at an autism parents support group. I was inspired by her devotion and wished that there were more educators with her mindset. One of the things she said that really resonated with me was about communication. Everyone can communicate, even if they are non-verbal – their behaviors are how they communicate. We have to take the time and figure out what they are trying to say. A tough love kind of teacher, Mino strives to teach her students to live without being prompt dependent, urging parents and caregivers to do the same. “It’s a harsh world. We must prepare our kids to face it.”
It’s autism awareness month and magazines and media share the stories of children with autism. Like any other kid, children with autism grow up. Services and resources are critical at every age but as autistic individuals grow up, the resources and services dwindle down; options are extremely limited. Those are the stories that need to be heard too. In a interview with Kpana Kpoto, Mino advises, “Even after 21, still find ways to build them up. They need support. Plan early.“ In order for parents to plan early, we need to be prepared and know what to plan for. Best Kept Secret sheds light on the things parents need to know. It’s a must see for any parent or caregiver of an autistic child and for teachers wanting to better communicate with their special needs students.
Have you seen Best Kept Secret yet? If not, it’s available for download on iTunes (for personal use) and on the Academic Video Store (for educational use).
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.
You may have seen the viral video by now: Five-year-old Daniel of Ojai, California, has autism, and loves to watch the Monday morning garbage pickup. Driver Manuel Sanchez decided to buy him a toy truck. It turned out to be one he’d already owned, but had gotten broken.
Videos like these make the country sigh a collective “Awwww….” Sanchez definitely went above and beyond. But the truth, as parents of children with special needs know, is that it’s common for people to do kindnesses for our kids—both ones in their lives and strangers, too. This weekend, our family boarded a crowded train and Max desperately wanted the corner seat, which was already occupied. Sitting in a nook feels safe and comforting to him. The man noticed Max whimpering, stood up and sat elsewhere. Max gave him a huge “Thank you!”
I could go on and on about the kindnesses people have shown Max over the years. The guy at Cold Stone Creamery who always lets Max have his kid-size scoop in a gigantic cup, because that’s how Max likes it. The airport staffer at Miami International who whisked us through an endless security line as Max was freaking out. The puppeteer who noticed that Max was standing in back of the auditorium, because he was too scared to come up front, and gave him a private show after the crowd had gone.
The pity stares, I can live without. But these small gestures and favors are so welcome. They make life happier and easier for Max—and, in turn, for me as a parent. And they’re comforting, too. Raising a child with special needs can be isolating. Sometimes people glare at us when Max is having a meltdown because they don’t know he has special needs. Strangers who care make me feel that I’m not in this alone.
“Because of Colin’s disabilities, social skills are not easy for him, and he often acts out in school, and the other kids don’t like him,” read the post on the Facebook page Happy Birthday Colin, started by his mom, Jennifer. Colin turns 11 on March 9th. “So when I asked him if he wanted a party for his birthday, he said there wasn’t a point because he has no friends. He eats lunch alone in the office every day because no one will let him sit with them, and rather than force someone to be unhappy with his presence, he sits alone in the office. So I thought, if I could create a page where people could send him positive thoughts and encouraging words, that wold be better than any birthday party. Please join me in making my very original son feel special on his day.”
Reading that, it’s hard not to feel awful for this child. And to totally understand the situation if you are the parent of a child with special needs. Whether a kid has autism, cerebral palsy or Down syndrome, he can lead a lonely existence. We parents do what we can. This mom had a great idea.
The page went up last week, and the outpouring of support has been amazing. As I write this, it has 1,735,835 likes coming in from around the world. A sorority at Indiana University made a Happy Birthday video for Colin. A police department in Texas shared their wishes. People are also sending cards by mail (Colin, P.O. Box 756, Richland, MI, 49083-0756).
I can only imagine how happy all the birthday love will make Colin. The powers of social media are mind-boggling. But I’m hoping for real-life social changes for him, ones that last long after his birthday. Ideally, Colin’s teachers will use this as a learning opportunity. Ideally, parents of the kids at Colin’s school will now encourage their kids to make friends with him and sit with him at lunch—or at least some of them will. And ideally, any parent anywhere reading this will have a better understanding of what life can be like for children with special needs, and teach their children well.
Yesterday, I watched Canadian freestyle skier Alex Bilodeau, 26, win the gold at Sochi. The camera panned to his brother, Frederic, wildly cheering him on, joy and pride beaming out of him. Soon, Alex had pulled Frederic over the security barrier and they hugged. Alex dedicated his gold medal to his big brother.
Frederic has cerebral palsy. It’s legendary by now that he has inspired his brother throughout his career, most famously when Alex won gold in Vancouver. As Alex told reporters, “Whatever I do in my life, my brother is my real inspiration. Just like you or I, he has dreams and most of them are not realizable to him…. Every day I feel very lucky to be a normal person that has the chance to go after his dreams. He does not have that chance. And for respect to him, I need to go after that. With his motivation he would be four-time Olympic champion…. He lives his dreams through me.”
I cried when I watched the brothers hug. And then, I cringed a little when Alex spoke. As much genuine brotherly love as there was, what he said emphasized the “dis” part of his brother’s disability. This is the opposite of what I wish for my son, Max, who has cerebral palsy: I want the world to see his abilities.
When we are around other kids and they ask why Max doesn’t speak like they do, I’ll explain that he does communicate, just in his own way. If his iPad and speech app are handy, Max can show them how he uses it to voice his thoughts. When other kids in the neighborhood have asked why Max can’t skateboard, I’ll say his muscles aren’t yet up to it—but then I’ll point out that he rides his bike really fast. Sometimes, they’ve had races.
People are so used to looking at kids like Max and feeling bad for them. I don’t want the pity; that does Max no good. In fact, it further impairs him. I feel it’s my job, as Max’s mom (and senior publicist), to show the world what he can do.
In a video NBC aired, Alex tears up as he says that if his brother weren’t “handicapped,” he probably would be an Olympic champion—the two used to ski together as kids. Their mother speaks of Frederic’s joy for life. And yet, it is so clear Frederic has ability. He plays chess with his brother. He’s selling his art to benefit the Quebec Cerebral Palsy association.
This mourning of a brother who will never win Olympic gold gets to me. Heck, how many bazillions of people who don’t have disability lack that kind of athletic prowess? How many people are ever Olympic champions? Only a very, very select few.
The entire world has warmed to a story about two brothers, one whose amazing skiing is powered by a brother who will never achieve that. I love that Alex and Frederic have the relationship they do. But I wish this were another story: About two brothers who each have their own special abilities.