On Sunday, November 2 at 2 AM, we turn back the clock an hour. Although moms and dads everywhere may wish they could sleep during that extra hour, the reality is most kids will be up and at ‘em. For parents of children with special needs who already have sleep challenges, this can be an especially tricky time of year. A few key strategies to make things go more smoothly for everyone:
• Ease into it. For the next several days, move up your child’s nap and bedtime by 15 minutes. Come Sunday morning, your darlings may just sleep in for most of that extra hour. This worked well for our family when our kids were little.
• Find the time. If your child is learning how to tell time, or has never had her own clock, this is a good moment to get her one. I let my daughter pick out an inexpensive digital clock online. On Saturday night, I plan to explain the whole “Spring ahead, fall back” thing, turn the clock back and—perhaps most importantly—show her the time when she is allowed to knock on our bedroom door in the morning.
• Make coming home in the dark welcoming. Returning to a pitch-black house after a family dinner out tends to make all of us hate Sunday nights even more, but we’ve found a new solution. Our family got a Piper to try, a chic mini home security and video monitoring system you control through an app. It’s been great to watch and listen in on the kids while I’m at work (there’s a 180-degree lens, so you can view an entire room) and talk to them through the two-way audio. We also got a door/window sensor, for extra security. Our favorite feature is the Smart Switch sensor, which plugs into an outlet; we connected a living room lamp to it, and now before we get home I turn it on from the Piper app so there’s a nice warm glow in the house when we drive up to it. When we’re out I change the setting to “Away” so the motion detector can alert us if anyone tries to break in and steal the Halloween candy.
• Actually use the shades. Pull them down at bedtime; you don’t want sunlight waking your children up any earlier than they might be inclined to because of the time change.
• Create a sleep chart. If the time shift has thrown off your tot, make a chart with columns for Bedtime/Wake-up Time/How I Feel. Fill them out with her daily, and talk through any grumpiness issues.
• Have a time-switch treat. At our house, we make chocolate-chip banana pancakes the morning after we switch back to standard time and, in the spring, the morning after we go to Daylight Saving Time. No matter how early we rise and shine, it makes getting up totally worth it.
Wings for Autism, an airport “rehearsal” that helps kids with autism feel calmer about flying, held a program at Piedmont Triad International Airport in Greensboro, North Carolina this weekend. Run by The Arc of the United States, and using a Delta plane, it allowed kids with autism to experience what it’s like to go through the hustle and bustle of an airport and security, and to sit on a plane with their families. Here’s a video of the program in action at another airport:
If you have a child with autism (or sensory issues, as I do), you know how stressful plane travel can be. Max went through a phase in which he repeatedly kicked the back of the seat in front of him; it helped calm him down, though it did anything but for the nearby passengers. We had to cushion his knees with our winter jackets and, once, switch seats so that I was the one in front of him. Thankfully, he grew out of it.
What’s doubly awesome about Wings for Autism is that it gives airport, airline and security staffers the chance to observe and interact with kids with autism, and better understand them. Unfortunately, you’re on your own for dealing with the glares you occasionally get from fellow passengers. Once, we sat near a woman who remarked to her kids about the “annoying noises” Max was making (basically, his form of speech). I leaned over and said, “That’s his way of talking.” And she still gave me a look. Nice!
There are five more Wings for Autism program dates coming up, in Boston, Washington and Anchorage (here’s the schedule, with a link to registration information).
“While I do love my son, and am fiercely protective of him, I know our lives would have been happier and far less complicated if he had never been born. I do wish I’d had an abortion. I wish it every day.” Those are the shocking words I read this morning, in a Daily Mail article, said by Gillian Relf, 69, mom to Stephen, 47. The piece has gotten a lot of attention, as did another recent one by the same publication in which other parents of a child with disability also said they would have terminated their pregnancy.
Let’s set aside the fact that this is a newspaper that thrives on shocking people into reading it. These are still real sentiments coming from real people. I read them with both sadness and heavy disappointment about the message they were implicitly conveying to the masses: That kids and adults with disability are damaged, lesser human beings who can ruin people’s lives.
As the parent of a kid with cerebral palsy, I completely understand the struggle with accepting a child’s special needs. Many of us contend with that. Just this week, I was musing about the ghost of that other child—the one I expected to have. In general, though, I’ve come to a place where Max’s disability is a part of who he is. Not every parent of a kid with special needs feels that way, of course, or needs to. Mom Gillian Relf is from a different generation; I wonder if she’d think otherwise if she had the resources and social media support that parents of kids with special needs have these days.
Still, making a public proclamation that you wish you’d aborted your child with Down syndrome is unfortunate. It’s downright painful to those of us who are out there doing our best to get the world to accept and include our children, which is often an uphill battle. It’s a free world and of course, any parent has a right to speak her mind—but I can’t but help but feel disturbed when people set back progress the rest of us have made for helping the world welcome children with special needs.
If you have a child with special needs, you know what an uphill battle it can be getting people see the ability in disability. Now imagine that your child is an adult—and the challenges both of you will face convincing people to hire him. I don’t dwell on this too much, since Max is still a kid, but it’s there in the back of my mind. The stats aren’t very reassuring: About 85 percent of adults with developmental disabilities did not have a paid job in the community between 2012 to 2013, per the most recent figures from National Core Indicators.
Aiming to change all that: the I’m In To Hire campaign that seeks to raise awareness about the lack of employment for people with intellectual and developmental disabilities—and get companies to take a pledge to support them. The campaign is spearheaded by Best Buddies International Founder Anthony K. Shriver and billionaire business magnate Carlos Slim. “People with IDD are incredibly talented, loyal, hard-working and driven individuals who have the ability to contribute to the workplace but unfortunately they are disproportionately unemployed in our nation and beyond,” said Shriver. “The impact individuals with IDD have made on our society is beyond exceptional and the workplace should be no different.”
Employers may be further convinced by the findings of a 2014 report, Employing People with Intellectual and Developmental Disabilities, done by the Institute for Corporate Productivity. Researchers surveyed major organizations who currently employ people with IDD. Their findings:
• 57% reported the addition of highly motivated employees who are good talent matches
• 43% said it produces measureable and observable business benefits
• 47% reported an inclusive culture attractive to talent pool
• 60% said it supports their diversity and inclusion strategy
Employers can pledge their support here, and Best Buddies will follow up to facilitate the hiring. You can show your support by tweeting or Facebook-posting one of these messages:
It’s more than the right thing to do. See the business benefits of employing people with intellectual and developmental disabilities: bit.ly/ImInToHire
I see people with special needs as skilled and employable and #ImInToHire for an inclusive workplace. RT to join me! bit.ly/ImInToHire
People with w/ intellectual and developmental disabilities build fantastic friendships and productive businesses. #ImInToHire, are you?
Our kids may be years away from job interviews and collecting paychecks, but we need to support initiatives like this for the sake of adults with disabilities and the adults our children will someday be. But it’s also an initiative that can benefit our children now. Anything that helps people better understand that people with special needs are capable brings us that much closer to a world that accepts and respects our kids.
Today is World Cerebral Palsy Day, a day that’s all about ideas that will change the world for people with cerebral palsy. Last year’s winners include a designer walker and a spill-proof cup. I have an idea—but the thing is, it already exists. The concept: More research for cerebral palsy. Some 17 million people across the world have cerebral palsy, and an estimated 350 million are closely connected to a child with CP. It is the most common childhood physical disability—and yet, there’s been a severe lack of federal funding for research into treatment and prevention.
One woman leading the charge: Cynthia Frisina, executive director and founder of Reaching for the Stars and mom to a daughter with CP. Her non-profit recently co-funded research at Kennedy Krieger and Johns Hopkins that showed the brains of kids with CP have more plasticity—and potential for recovery—than previously believed. In March, Cynthia testified before Congress to push for more funding for CP research. Now the 2015 Committee on Appropriations is urging the National Institutes of Health to develop a five-year strategic plan for CP prevention, treatment and cure, and pushing the Centers for Disease Control to build on research methods. As Cynthia says, “Never before that we know of have the words ‘prevention, treatment and cure’ ever been used in conjunction with cerebral palsy in U.S. federal legislation. This is a tremendous step forward.”
Also on the frontier of the research landscape: The CP Genetic Research Network. Principal investigator Michael Kruer, a pediatric neurologist and CP genetics researcher, answered some questions:
Dr. Michael Kruer
In a nutshell, what’s known so far about the genetic component of CP?
Genes are the DNA “recipe” that contain the instructions needed to build a human being. Some control things like hair or eye color. Others are critical for brain development. Cerebral palsy genes fall in this latter category. If a gene is missing or if the genetic code is incorrect, (a “mutation”) this can alter the blueprint and affect that gene’s function, disrupting neurodevelopment. Mutations can arise in many ways. Most participants in our study do not have a family history of CP, but some do.
To be quite honest, there is more that we don’t know about CP genetics than we DO know.
• We do know that out of the 25,000 or so genes in the human body, mutations in just one gene can cause CP in many cases. Current estimates indicate that literally dozens of genes that cause CP are waiting to be discovered.
• Another thing we do know is that of the handful of CP genes known, several map to the same pathway. Our studies indicate that these genes control the way brain cells connect to and communicate with each other. In the laboratory we have begun testing compounds that can improve these connections with very promising results.
What are you still hoping to discover about the genetic component of CP?
The goal of the CP Genetic Research Network is to transform the state of the science in CP. Our efforts will allow us to discover new genes as the cause of CP in our participants. For any participant, if we discover the cause of their CP, we can share that information with them if they wish. Some genes are likely to map to the CP pathway we have already identified. Others will point us in exciting new directions.
Could this prevent cerebral palsy down the road in unborn infants?
We’re not yet at this point with other offers, but other research in CP is aimed at this.
How will pinpointing genetic causes of CP be of help to future generations of children?
Through these efforts we seek to develop completely new ways to treat CP, not by treating symptoms but by targeting the underlying neurobiological problem. We will be able to develop completely new medicines, targeted to treat what goes wrong in cells rather than symptoms. We will accomplish this by better understanding the biology of the disorder.
How could knowing the genetic causes of CP help kids who currently have the disorder?
For many families, there is a sense that there is SOMETHING that caused their child’s CP, even if no one has been able to able to identify what that is. Some might even think that the cause is known, but in retrospect, there might be more to the story. Our studies are hoping to bring closure to what for some has been a long journey, filled with many office visits and tests. So, we may be able to offer answers as to WHY. Some parents have told me such answers can help them shake off years of unfounded guilt.
I know you’re recruiting for your study. Can you share more about it?
We want to understand what causes CP, and we are targeting those with CP of unknown origin—no premature, no known stroke—with the belief that many of the participants, children and adults, will have a mutation in a single gene that lead to their CP. We will provide an individualized, state-of-the-art evaluation of their genetic code and compare their code with that of their healthy mother and father. On an individual level, for many participants this will allow us to determine the cause of their CP. On a larger level, we think that many people will have mutations in the same genes and that these genes will converge on common pathways that shed new light on brain processes that lead to cerebral palsy when something goes wrong.
In order to enroll, both parents and their child with cerebral palsy need to participate in order to get the most information possible. There is no age limit as long as all three participate. Participation is simple. We send a study kit directly to your home and a swab is brushed on the inside of both cheeks. The samples are then simply dropped in the mail. To get more information, those interested should contact our study coordinator Jessica at firstname.lastname@example.org. There is no cost to participate but enrollment is limited to the first 100 parent-child trios. Those who enroll by October 3 will receive a free gift card for their time.
Head on over to the World CP Day website and post an idea for something that could change the world for your child with cerebral palsy or others who have it—think a product, technology or service. I encourage you to nominated Reaching for the Stars as your charity/organization, because the organization whose supporters share the most ideas before October 31 2014 will win $10,000.