Archive for the ‘ SPD ’ Category

Hooray For Cheerleaders With Special Needs

Thursday, February 6th, 2014

There’s a trend out there worth cheering for: more teens with special needs are becoming cheerleaders. I’ve been reading articles about girls with special needs joining squads, as Rachel Massingale above did at Centennial High School in Boise, Idaho, this year.

Cheerleader Megan Squire, of Verrado High School in Buckeye, Arizona (above), made headlines last year after starring in a video for a Katy Perry music contest. In November, Katy took her to the American Music Awards.

The Sparkle Effect is a nonprofit that encourages teens to include students with special needs—including Down syndrome, autism, and cerebral palsy—in high-school cheerleading programs. To date, there are 122 Sparkle Effect inclusive dance and cheer teams around the country. Unfortunately, schools aren’t always so open-minded. Last fall, the parents of high school freshman Brittany Davila, who lives in Deer Park, Texas and has Down syndrome (that’s her in the center, above), had to put in a special request so she could do her cheer thing; officials wanted to keep her in the stands, citing safety concerns.

Inclusive cheerleading squads are awesome, but I also love the ones out there comprised entirely of people with disabilities. There are the Shining Diamonds (above), a cheerleading team in Helena, Alabama made up of people ages 4 to 31 with special needs who travel to competitions throughout the Southeast (here’s their Go Fund Me page). And the Dakota Spirit Sparklers, an adaptive cheerleading team in Sioux Falls, South Dakota.

Either way, it’s A Good Thing for the world to see that having special needs doesn’t make you any less capable of expressing enthusiasm and getting into the spirit of a game.

From my other blog:

Tracking devices for children with autism and other special needs 

Jobs for people with disabilities, and a flash of hope

Birthday love for my other special child


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Baby Care Basics: What is Down Syndrome?
Baby Care Basics: What is Down Syndrome?
Baby Care Basics: What is Down Syndrome?


Images: Rachel Massingale/screen-grab, KTBV video; Brittany Davila/screen-grab, KHOU video; Shining Diamonds, Go Fund Me

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Teaching Kids With Disabilities To Safely Cross The Street

Thursday, January 23rd, 2014

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.

From my other blog: 

Special attention for my child without special needs

Video: A dad’s journey with a son who has Down Syndrome

The people who help you see the progress


Image of child standing in walker via Shutterstock

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A New Test That Diagnoses Developmental Delays

Tuesday, January 21st, 2014

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.

This is great news; the earlier a child with special needs can get intervention, the better the outcome. Easter Seals also offers a free online Developmental Milestones Screening parents can take, for kids ages 1 month to 5 years.

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.

From my other blog:

How the new Disney disability card works: 9 tips for parents of kids with special needs

The people who help you see the progress

15 learning milestones that thrill parents of kids with special needs

Image of child getting blood test via Shutterstock. 

Early Signs of Autism
Early Signs of Autism
Early Signs of Autism

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More Parents Trying Alternative Medicine For Kids With Special Needs

Tuesday, January 14th, 2014

An increasing number of families are using complementary and alternative medicine (CAM) for children with autism and other developmental delays, finds a new study from the University of California-Davis MIND Institute. Alternative approaches included food-oriented ones such as a gluten-free diet; homeopathic remedies; and meditation and other mind-body medicine. Families typically used these treatments in addition to conventional approaches found the researchers, reporting on 600 children age 2 to 5.

Max has cerebral palsy, and my husband and I have tried all sorts of alternative treatments over the years. We have given Max an Omega-3 supplement, Coromega, said to help with brain development. We’ve tried craniosacral therapy to help loosen Max’s muscles, and hyperbaric oxygen therapy to spark brain activity. Max even got a stem cell infusion at Duke University. This was all done with the approval of Max’s team of doctors and specialists—and that’s key. In the above study, close to 9 percent of families were using alternative treatment considered potentially unsafe or unproven, including chelation therapy and vitamin B-12 injections.

“Our study suggests that pediatricians and other providers need to ask about CAM use in the context of providing care for children with autism and other developmental disorders,” said study lead author Roger Scott Atkins, “and take a more active role in helping families make decisions about treatment options based on available information related to potential benefits and risks.”

Our motto has always been, if it couldn’t hurt Max and it might help, we’ll do it. My son needs all the help he can get to help him reach his potential; as his parents, we owe it to him to try.

From my other blog:

The people who help you see the progress your child is making

Stem cell therapy: Has it helped Max?

On not explaining your child’s special needs to strangers


Image of bottles on shelf in old pharmacy via Shutterstock

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Knowing When To Push A Child With Sensory Issues

Friday, January 10th, 2014

Here’s Max peering into the Disney Junior—Live On Stage! show at Disney California Adventure Park. We were there on vacation over the holiday break. While we spent a whole lot of time in the wondrous Cars Land, an amazing recreation of Radiator Springs, my Lightning-McQueen-obsessed child did agree to see other parts of the park, along with Disneyland.

At 11, Max still has a thing for Disney Junior! shows. For years, he’s watched Mickey Mouse Clubhouse in the mornings, sitting in my bed. And so when we wandered by the theater on Hollywood Boulevard right off bat he excitedly noticed the theater marquee. There are several shows throughout the day, and we stopped by for the next one.

We’d bought Max’s noise-blocking headphones on the trip, along with a back-up pair. But theaters are toughies because they’re dark. Max only started going to movie theaters last year (Monsters University lured him in). I told the cast members outside the theater that Max was fearful, and they let him stand behind the rope and avoid the crowded line. Then, right when the doors were about to open, they offered to let him be the first kid in.

Max turned them down.

Now, I knew that if I could just get Max inside, he’d enjoy the show. It features all his favorites: The Mickey Mouse Clubhouse gang, Jake and the Never Land Pirates, Sofia the Great and Doc McStuffins.

“Come on, Max!” I said. “Let’s go in!”

I gave him a little tug.

“Nooooooo!” said Max, standing his ground.

I waited till everyone had gone into the theater and the show was going to start, and tried again: “Max, we can just go in now, and we can go to the back!”

“Nooooooo!” said Max.

At that point, I decided it was a lost cause. This is a line I regularly walk with Max: coaxing him, nudging him, even pushing him to experience new things but also knowing when to back off. It’s often this way with restaurants. If it were up to Max, we’d go to the same exact diner every time, but the rest of us are tired of that same exact diner. When we try a new spot we arrive right when it opens so we’re the only people there, and request a corner table (that’s comforting to Max).

The other week, we hit a local sushi place (Max is fond of miso soup and rice). There were just a few people in there but it was a little dim and Max started wailing. My husband and I weren’t going to give up. Dave took him for a walk, Sabrina and I grabbed a table and a few minutes later Dave came back in with Max, sat him down and let him watch the movie Cars 2 on his iPhone. Evening out: saved.

Max’s sensory issues have gotten better over the years, though they are still very much an issue for him. We know, though, that sometimes, if we take things slowly, he can push past his sensory challenges and his fears, too. That’s exactly what I did with the Disney Jr. show. When we returned the next morning, I struck up a conversation with a super-nice cast member, Mike. He had an idea: We’d let Max in a different door that would take him to the back of the theater. I told Max. We walked over to the door. He looked dubious.

Mike opened the doorway. Max tentatively went in.

For a few minutes, Max stood behind the curtain and peered in.

And then—holy Disney magic!—he smiled at me, and we took our seats in the back of the theater. And he had the biggest grin on his face the entire time.

And wouldn’t you know it: Max had me bring him back to the show the next day, too.

From my other blog:

A visit to Cars Land: Life is all downhill after this

How the Disney disability card works: 9 tips for kids with special needs

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