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.
“Daniel Thomas suffered from Cerebral Palsy and seizures for most of his life, but he always believed God would heal him. Then one day God did.”
That’s the description for a popular video about a man born with cerebral cerebral palsy, created by the Christian Broadcasting Network. Daniel Thomas grew up with epilepsy, speech issues and fine-motor challenges. He met his wife, Cecile, at church and together, they prayed that God would heal the cerebral palsy and seizures. He says he began to “talk straight” and use his hands better. Today, the video says, “Daniel is able to do things he only dreamed of before.” There’s no mention of whether he still has seizures and epilepsy. Here, see for yourself:
The video shows a “before” shot of Thomas struggling to pick up a glass of water. The “after” shows him strumming on a guitar. I remain unclear on whether that “before” was a recreation; they randomly happened to have footage of him picking up a glass of water?! More importantly, why does the video not make any mention of the doctors and therapists who have surely helped this man?
Skeptical: Oh, yes, I am.
I am all for prayers for our children.
I am not believing that this man’s cerebral palsy was healed by faith.
Messages like this may give parents hope, and we so need hope. That said, cerebral palsy isn’t a condition that’s medically curable—something parents like me who have kids with CP are acutely aware of. Messages like this ignore (and even undermine) all the hard effort parents, therapists, doctors and teachers put into helping our children develop and work around their challenges.
My son, Max, had a stroke at birth. Doctors told us he might never walk or talk, that he could have hearing and vision problems, that he was at major risk for cognitive impairment. My husband and I prayed, but we also went all out helping him. “Get him as much therapy as possible,” the world-famous pediatric neurologist told us, and we did. We looked into enrolling Max in Early Intervention while he was still in the NICU. He started getting physical therapy at one month old. We tried alternative treatments, including hyperbaric oxygen treatment and craniosacral therapy. At six years old, Max got a stem cell infusion at Duke University.
Perhaps Max is doing as well as he is in part because of a Higher Authority. We are definitely blessed that he has a whole lot of determination. But I know that Max is thriving because of the countless hours I have spent doing therapy with him, training him, encouraging him and coming up with ways to enable him. He walks pretty well because he learned how using a gait trainer; now, every morning, I strap his feet into orthotics and every evening, I strap his feet into night braces. He is finally feeding himself because I’ve repeatedly coaxed him to grasp the spoon and guide it to his mouth. He is putting together words on his speech app to form sentences because we practice all the time. This is all also thanks to Team Max—the doctors, teachers and speech, occupational and physical therapists who help him and show me how to best help him.
It is no miracle that Max is walking, communicates, is learning to read and is gaining independence; it’s years and years of work and dedication.
Me, I have never looked to God to “cure” my son’s cerebral palsy. I trust in the powers I possess as his parent to enable him and do what’s best for him. I have faith in Max’s can-do spirit. I believe in God, yes, but I also believe in us.
These parents didn’t just think up stuff that would make life better for their kids with special needs—they made them happen. Props to them for inventions that enable all our children.
Dolls for kids with special needs
At 9-years-old, Hannah Feda was flipping through a toy catalog and noticed there were no dolls that looked like her. Hannah has Down syndrome; her mom, Connie, set out to find dolls that resembled her daughter, but didn’t find any she thought were good. So she set out to create her own with help from a sculptor, occupational therapists, and other parents. The result: Dolls for Downs, whose mission is to “represent children with disabilities in an honest, favorable light and give kids with disabilities a friend for life.” The company’s first deliveries will be arriving soon.
A cool way to get around
When DeeAnn and Jason’s son, Zachary, was a tot, they needed something to help him move around the house; Zach has spina bifida, and cannot move his legs. With the help of an engineering friend they came up with the ZipZac chair. Suddenly, Zachary had the ability to move around the house, pick up toys, and play with them by himself and generally be more independent. The chair is now available in two sizes, one for kids up to 3-years-old, and one for kids ages 2.5 to 5.
A safer sleep for kids with autism
Rose Morris had a son with autism who tended to wander in the night, leaving her concerned about his safety (and her sleep deprivation). While staying at a friend’s house, he ended up in a Pack ‘N Play with an afghan on top, secured by bungee cords. And that gave her the idea for developing The Safety Sleeper, a bedframe that turns any mattress into an enclosed canopy bed—enabling both kids and their parents to rest easy.
Educational apps for kids with special needs
British mom Bev Dean, founder of Special iApps, had some very cute inspiration: Her son William, born in 2005 with Down syndrome and other special needs. A former IT specialist, her drive to create engaging, educational apps for William lead her to become an Apple app developer. The apps she’s created include Special Words, Special Numbers, and Special Stories (all available on iTunes, for iPhone, iPad, and Android), with more coming soon.
Drool-proof clothing for kids with special needs
Kids with cerebral palsy often have uncontrollable drooling, and it’s hard to find ways to avoid sopping-wet shirts. Richard Kligman decided to create a line of high-quality, quick-dry, antibacterial, and good-looking clothing for his son, Moishe, an 11-year-old with CP, so “he would not have to wear a bib all day.” He hired a designer and raised $25,000 in funding on Kickstarter. Called Mianzi (which means “bamboo” in Swahili, the material the clothing is made from), the first batch of shirts—with long and short sleeves—are on pre-order.
An easy way to control devices
Phil Weaver began building contraptions for his son Jackson, then 3, a few years ago. Jackson his cerebral palsy and Weaver wanted his son to be better able to play with toys. So he came up with the Switchamajig, which enabled Jackson to easily control movements of switch-adapted toys. Now available, the device allows users to control up to six switch ports on switch-adapted toys and appliances. A new unit, the Switchamajig IR, works with non-adapted devices.
Know of other great inventions by parents of kids with special needs? Please do share!
Max does not currently have career aspirations he’s yet shared with me. I’m pretty sure he’d like to work at Carsland, but given that he is only ten years old and his obsession with all things Lightning McQueen might end before adulthood, I can’t be sure.
I have so much optimism for Max, but I also have realism and so I believe his career choices might be limited by the disabilities he has from the cerebral palsy. Still, I am constantly awed by the accomplishments of others who also have CP. Last week, there were two: a 16-year-old with athetoid cerebral palsy, Natasha Lambert, who crossed the English Channel solo, steering her yacht with a mouth device. Then I read about Steph Hammerman, a 23-year-old who recently became the world’s first CrossFit trainer with cerebral palsy.
As Steph tells it, during college she put on weight and began working with a trainer. Eventually, she got into hand-cycling, racing competitively. Bitten by the fitness bug and seeking to grain strength, she looked into CrossFit and fell in love. Recently, she became the world’s first certified CrossFit trainer with cerebral palsy. As she said, “There’s no reason in this world that people have to say they can’t do something. If somebody really wants to do something, they’re gonna find a way to make it work.”
As much as I love hearing that, as much of a cheerleader as I am for Max, I am not convinced he will be able to do anything in this world. A surgeon? I’d say no, given his fine-motor challenges. A glass blower? Ditto. True, technology is ever-evolving and who knows, maybe when Max gets older there will be robots and machines that perform all kinds of surgery and create glass by pressing buttons. Right now, I feel confident that there will be a growing number of resources as he gets older, optimism that he will find his place, and inspired by others out there with special needs who are blazing trails for him and other kids.
People with disabilities are twice as likely to become victims of crime as as those without disabilities, per The National Crime Victim Survey. What doesn’t seem to have been studied: How often people with disabilities are likely to be harmed by police who are not aware of how to handle them.
This is an issue recently thrust in to the public eye with the tragic death of Robert Ethan Saylor, a 26-year-old with Down syndrome. As is widely known by now, back in January Saylor was at a movie theater and refused to leave because he wanted to see the next show. After authorities were called, Saylor resisted attempts to be removed and grew agitated. The officers pinned him down on his stomach and handcuffed him, letting up only when Saylor showed signs of distress. His death was ruled a homicide, by asphyxiation.
His death, and the lack of criminal charges pressed against the officers, has caused an uproar in the Down syndrome community. But it’s also been incredibly unsettling to others who have loved ones with disabilities. It’s made parents like me hyper-aware that adults who are unable to communicate as others can, who get upset by certain situations and who may not be able to follow orders are at risk of being considered disobedient by police, risking harm. Max, who has cerebral palsy, will grow up to be that adult, most likely. And what if, even now, he got lost in a crowd? What if he wigged out? What the average policeman know how to handle him? No, I think.
It was heartening to read that this week, New York State rolled out the first ever sensitivity training for police offers to help them better interact with people who have developmental disabilities. Although the First Responders Disability Awareness Training is not mandated by the state, New York’s Developmental Disabilities Planning Council pushed for funding it. Currently, as seems to be the case in other states, New York has no protocol for arresting and charging suspects with developmental disabilities.
The American’s With Disabilities Act website offers publications that inform law enforcers about handling people with disabilities. How many police officers actually read them, or get any training, is a big, worrisome question mark. Sometimes, decency and common sense alone won’t help.
I have enough concerns about how my son will navigate this world as he grows up. I hope that authorities in cities and states around the country learn from the tragedy of Robert Ethan Saylor and, in the coming years, start training their police to better understand people with disabilities—and do right by them.
Hopefully, non-profits that advocate for the disabled will keep pushing for this. People who have loved ones with disabilities can call their local police precincts and ask for this. Meanwhile, I’ll be holding Max’s hand extra tightly when we’re out.