I try hard not to think too much about Max’s future. Long ago, I learned that it mostly made me anxious, which did me and Max no good whatsoever. And so I do my best to teach, enable and encourage him, and I hope for the best. Sometimes, though, I wonder about whether he will get married. Given that he’s 11 years old, he’s got plenty of time. (Once, I asked who he’d like to marry, and he answered “Lightning McQueen.”) Still, it’s one of those life happinesses you want for your children, and impossible to ignore.
I saw a video the other day that made me wistful. Vantrease Blair helps run a home for people with disabilities in Orlando. After getting engaged and planning her big day, Blair decided to include seven women from the home in her ceremony. “I wanted to give them the wedding of their dreams and, luckily enough, I married someone who was right on with that and said, ‘Okay, let’s do it!’” she said.
The women picked their white dresses, bouquets, flowers, cakes and wedding albums. Some wore tiaras during the ceremony and some, veils, as they watched Blair take her vows. They all glowed. Afterward, the newlyweds held two receptions: One for themselves, and one for the seven ladies.
Watching the women, you couldn’t help but feel happy for them. And yet, I also felt a bit sad. Were they truly incapable of getting married, even if not in the traditional way? In recent years, I’ve read amazing stories about people with special needs falling in love and marrying, including people with Down syndrome and intellectual disability. As the mother of one bride with cerebral palsy said, “There is no disabled love. There is only true love.”
I’ve got a fashion challenge with my son, and it’s got nothing to do with him wanting to wear his new Lightning McQueen slippers all the time. We need to find clothing that he can put on himself. This is not easy; Max’s cerebral palsy means his fingers aren’t that nimble and he can’t easily move his arms up and down. My husband’s mother used to be a clothes designer, and we’ve recently asked her to consider making pants for Max that he’d be able to open and close.
Turns out another grandmother has already been there, designed that. Karen Bowersox, 65, of Ohio has a granddaughter, Maggie, with Down syndrome. It had long been a challenge finding clothes that fit her body, Bowersox has said.
As she’s noted, people with DS typically have a short thigh bone and upper arm bone, which can make sleeves and pants too long; because of low muscle tone, they may develop larger stomachs. In 2010 Bowersox found a good designer and launched Downs Designs. Today, there’s an entire line of clothing including jeans with elastic bands so they’re easier to pull up and down, shirts with different sleeve lengths, shorts and capris. Bowersox calls her creations “Down Sizing.” Tags are printed in inner pockets, so there are no itch problems for those with sensory issues.
Other clothing line creators have had similar motivation; the recently debuted Mianzi Fashion line is the brainchild of a father, Richard Nachum Kligman, who has a son with cerebral palsy. The shirts feature quick-drying bamboo fabric and an extra layer of material so they don’t get soaked from drool (an issue for some children and adults with CP). He launched the line with $25,000 in funding pledged on Kickstarter. Last summer, Bowersox won $50,000 worth of digital marketing from Staples’ Push It Forward contest.
Clothing geared toward people with special needs can improve their lives by giving them more confidence—and increasing their independence. There are actually many people out there with fine-motor skill challenges who would benefit from Downs Designs, including ones with CP. Sometimes Max struggles even with elastic waist bands, like the kind on sweatpants, so we’ve been considering ones with big loops he can grasp. I’m doubtful Prada or H&M will be making them anytime soon so meanwhile, I’m showing this to my mother-in-law. Hint, hint.
Practically every single day, I get a Google alert about a wheelchair user struck by a vehicle. Like the woman in a wheelchair in Memphis hit by a FedEx truck last week and a hit-and-run in Marshfield, Wisconsin, involving a woman in a motorized wheelchair who was on the road because the sidewalks were covered in snow.
I couldn’t find recent stats, but older ones from the National Highway Traffic Safety Administration were alarming enough: Between 1990 and 1995, some 7,121 people in wheelchairs were injured or killed in incidents involving motor vehicles. Vans were involved in almost half of those injuries; passenger cars accounted for another 30 percent, and the rest involved buses, trucks and ambulances. Things couldn’t possibly have improved since then, given the growing popularity of minivans and SUVs.
I mention this not to alarm parents who have children in wheelchair, but as a heads up about teaching kids good street-crossing techniques when they’re young. These alerts have made me very aware that I have been lax about it. I’m a born and bred New Yorker, which partly explains why I’m impervious to traffic. I have been known, when I’m in a rush, to dash across a traffic-filled street and hold up my hand to stop an approaching car. (And no, I do not have a death wish). Used to be that even when I was with the kids, I’d cross in the middle of the street or against the light.
The Google wheelchair accident alerts changed that.
I have no idea whether Max, who has cerebral palsy, will be independent as an adult. I have high hopes that he will, though, and I realized I should be instilling good street-crossing habits in him now, along with his sister. I’ll admit I haven’t paid as much attention as I should to this, particularly with Max, because there are a whole lot of other to-dos on my list of things to teach him. But because the CP means he is not always steady on his feet and his reaction times are delayed, he needs all the help he can get keeping the traffic odds on his side.
These days, our family crosses only at corners, when we get the signal. The kids have learned to look both ways. We’ve talked about never glancing at your iPad or iPhone or any device when you are on a road. Who knows, maybe there will be some cool new technology in the future that will make street crossing—and major intersections—safer for people with disabilities. For now, I’m going with that tried-and-true strategy: Teach your children well.
A new blood test will detect chromosomal variations that may be responsible for a child’s developmental delay or intellectual disability. Called the Affymetrix CystoScan Dx Assay, it can do a complete genetic analysis and detect both large and small chromosomal variations that are often responsible for these disabilities.
“This new tool may help in the identification of possible causes of a child’s developmental delay or intellectual disability, allowing health care providers and parents to intervene with appropriate care and support for the child,” said Alberto Gutierrez, Ph.D., direct of the Office of In Vitro Diagnostics and Radiological Health of the Food and Drug Administration. Approximately two to three percent of children in the United States have some form of intellectual disability, according to the National Institute of Health and the American Academy of Pediatrics.
Although genetic tests already exist to to detect conditions such as Down syndrome, they have to be ordered individually. The device cannot be used for prenatal testing, and will be used in conjunction with other clinical and diagnostic findings.
Of course, there’s nothing like a mother’s gut intuition, something nobody has patented just yet. If you sense something isn’t quite right with your child, don’t hesitate to discuss it with your pediatrician.
Have you seen this viral video? It’s about Hernan, a little boy in Buenos Aires with Down syndrome who meets up with a Labrador named Himalaya. His mother posted the video on YouTube, noting that her son is a bit withdrawn and does not like to be touched. I’ve watched it at least five times, it’s that sweet.
We don’t own a dog but now I need to know: Where do you find one like this?!