A Day in the Life . . . The science of friendship

Tom, left, with his Camp Munroe buddy, volunteer Joshua Price.

“Are you my friend?”

That’s my son Tom’s pickup line. He uses it most often on the playground when he wants to connect with another kid. Needless to say, most kids think the question — coming in a slightly sing-song tone from a boy they’ve never met before — is a little weird.

Most kids think my son is a little weird.

My son is at Camp Munroe for the next two weeks. He’s 7, and this will be his first time at the camp — at any camp. He was diagnosed “on the autism spectrum” – officially, pervasive developmental disorder, not otherwise specified – when he was a little older than 2.

We don’t want the moon from this camp. In the five years since Tom’s diagnosis, our expectations have continually modified. My great hope for the next two weeks is that Tom will come out of the experience with a friend.

Seems like such a little thing, doesn’t it? But apart from his siblings and cousins, Tom doesn’t have many friends. There are some children at school he names as friends when you press him, but he’s rarely been invited to any birthday parties. When his own seventh birthday rolled around, we sent out 28 invitations to a bowling party and were ecstatic to get five kids.

Most of the time, Tom doesn’t really seem to care. He’s not huddled in a corner of his room, wondering why no one likes him. He watches music videos, he shoots baskets, he rides his skateboard (under close supervision) and plays with his dog. He’s happy.

I care, of course. I worry for the day when he’ll try to make a connection and fail and be hurt. That’s why he’s here at UNMC this week. He spends the school year working hard, he’s 70 percent mainstreamed, he reads near grade level despite some comprehension issues – but he doesn’t know how to connect.

On a tour of the camp last week, I was struck by how withdrawn my son was. At home, when it’s just the five of us, he is outgoing and confident. He can even be combative if he thinks his brother or sister is being unfair, and my older son Joe had better watch out if he teases my daughter, Rosemary. Nobody picks on Rosemary when Tom’s around.

He can be sneaky if he’s trying to get away with something. (Mountain Dew at 7:50 a.m.? Who needs to ask permission?) And he has a little boy’s sense of humor.

On the tour, he showed none of that. He wouldn’t meet staffer Nicole Giron’s eyes. He wouldn’t answer her questions, unless she got face-to-face with him (in a very friendly way) and basically left him no choice.

He was excited by what he saw – the play areas, the other kids, and especially the pool. Monday morning, when my wife got up, he was sitting on the living room couch, holding his bathing suit on his lap.

“It’s Monday,” he informed my wife. “I’m going to play basketball in the pool.”

I hope, when he plays basketball in the pool, he plays with other children.

He’ll probably ask “Are you my friend?”

Maybe one of them will say “Yes.”

Power Wheels to Makeshift Power Wheelchairs

The idea of modifying cars is not a new one. Just look at reality shows like “Trick My Truck.”  But the concept of adapting toy cars for children with disabilities?

Now, that’s novel.

That’s exactly what happened at the Center for Healthy Living last month. Fifty area physical therapists broke out the power tools and listened to national early mobility expert Cole Galloway, Ph.D., from the University of Delaware show them how to turn “Power Wheels” into early versions of power wheelchairs.

First, the groups ripped off the steering wheels of six toy trucks and attached big red buttons in their place. Then, they added kill switches by drilling holes into the plastic near the license plates. Next, they added padded PVC pipe frames and finally, seatbelts. Last but not least, decal stickers made the Larry the Cable Guy character car come to life.

Paula Wachholtz, a physical therapist for Papillion La-Vista School District, came away impressed. “I want to go to Toys R Us on the way home,” she said.

Paula Wachholtz, a physical therapist for Papillion La-Vista School District, came away impressed. “I want to go to Toys R Us on the way home,” she said.

The cost: $89 for each car, plus supplies. The cost for a power wheelchair: somewhere in the neighborhood of $5,000-$20,000.

“Most adaptive equipment is considered medical equipment, therefore they don’t sell very many and it drives up the cost,” said Reggie Harbourne, Ph.D., associate professor of physical therapy at UNMC’s Munroe-Meyer Institute and organizer of the workshop. “This is so easy, what do we have to lose?”

Physical therapists spent about an hour transforming the toy cars. Finally, the big moment: putting kids behind the wheel for a test drive.

tyler

First up was 3-year-old Tyler Lundy, who has cerebral palsy. He was apprehensive at first. Much like a 16-year-old trying to drive a stick shift, his driving was herky-jerky at best. After a few tries, he put the red button to the floor and cruised off into the sunset (OK, it was more like the free throw line of the gym at three miles per hour, but very cute, nonetheless). Just when his parents saw their son growing up before their eyes, the car abruptly stopped. Tyler was crying. He couldn’t see his mom anymore.

“They do tend to cry the first couple times,” Dr. Harbourne said. “It’s a lot of new information. The noise, the speed, and for some it may be the first time they’ve ever caused something to go.”

But pretty soon, Tyler was back at it, showing off by using his chin to make the car go. He grinned like he was in a parade and even threw out some waves to the crowd of therapists.

Next up was Brandon. At just 11 months, he was the smallest of the children to try out the truck. Born prematurely, he is still learning to roll over. While an initial smile crossed his lips when he hit the gas, it wasn’t long before he, too, was in tears.

His face said it all: “Where’s my mom?”

melaniebrandon

The access to mobility for children who can’t move on their own is beneficial in two ways, Dr. Harbourne said. It allows them to control their environment and, simply, to socialize. Just like adults who get something new and want to show it off to their friends, kids clamor to get close to TowMater or Mater, as he’s known in the movie.

“Other kids Tyler’s age normally don’t want his toy; nobody wants a stroller. But with this, they’ll come talk to him, and he can work on his social and language skills, too,” Dr. Harbourne said.

Without mobility, kids with disabilities don’t have much of a chance to create cause and effect, which helps them understand concepts like over, under, around and through.

“If children don’t have the motor capacity to do things they cause the effect of, it can lead to delays in others area, like cognition or language. They don’t learn by watching others do things,” Dr. Harbourne said.

josie

Parents can think of it this way. When kids knock their sippy cups off their highchairs, it’s not because they’re trying to annoy you (well, maybe a little), but rather because it helps them understand concepts like object permanence (Even if I drop this, it still comes back, again and again).

Tyler got the “cause and effect” message loud and clear. His parents were excited for him to take the car home.

“This is a great way for him to keep up with his peers,” said his mom, Jennifer. “Just like any typical boy…he loves to go fast.”tysmilesm

Finding comfort from grief, one stuffed animal at a time

Aidan Curry was a “wild ride from the start,” recalled his mom, Jennifer Brock, a speech-language pathologist at UNMC’s Munroe-Meyer Institute, over a cup of coffee on a cold January day.

He liked bugs and dinosaurs and animals in general. Stuff 2-year-old boys are wired to love. But his mom isn’t sure what he’d be into now. Trains? Spiderman? Batman? Sadly, she’ll never know. The blue-eyed blond toddler, known to his family as “Tots,” was killed in an auto accident just before Christmas in 2011.

The Curry family had been on their way home from having family photos taken in Lincoln.  A semi-tractor trailer slammed into the back of their car, which held a sleeping Aidan and his little sister, Ansley, in the backseat.

“The car seat wasn’t enough to save Aidan, but the car seat is the only thing that saved Ansley,” Brock said. “Ansley walked away without a scratch.”

Dad Jeff was trapped in the driver’s seat. Brock was shaken up. The ambulance arrived and medics strapped Ansley to a backboard before they whisked her away to the hospital. She was conscious and alert the whole time. Seventeen-months-old and all alone.

Brock struggles to imagine what the experience must have been like for her daughter. On the ride to the hospital, as doctors she’d never met examined her, while she underwent multiple tests, there was no one and nothing familiar to her until someone handed the little girl a homemade quilt. A comfort item. Something recognizable in the midst of the unknown.

And that is where the idea for Aidan’s Animals comes from. “Born out of tragedy but maintained by love,” the non-profit organization was started by the Curry family to honor their son’s short, but meaningful life and remember the kindness that was shown to their daughter in her time of need.

“When you don’t have mom or dad or your sibling, this way you have a teddy bear or a stuffed dog, something to hug when you go to radiology, for blood work…a constant cuddle, something familiar.”

Aidan’s Animals has provided cuddles to more than 800 children in the Omaha area and beyond. Whether it’s Children’s Hospital & Medical Center or Bellevue Medical Center or further away in Connecticut following the Sandy Hook Elementary tragedy, the Brock family continues to give back tenfold what they received those fateful days following Dec. 3, 2011.

Now they want to do it here.

Starting Friday, Aidan’s Animals will conduct a toy/stuffed animal/blanket drive called “Kuddles for Kids” through Feb. 28. The items will be donated to the pediatric units at The Nebraska Medical Center.

UNMC and The Nebraska Medical Center employees are encouraged to contribute to any of the drop sites on campus (listed below). If individuals would like to contribute but are unable to get to a drop site on campus, they can always donate to the cause through Aidan’s Animals wishlist.

“At some point, everyone is faced with a tragedy,” Brock said. “We hope to minimize the effects by offering the highest level of support and creating more positives out of ordinarily horrible and devastating ordeals.”

Tomorrow, Feb. 20, will mark what would have been Aidan’s fourth birthday. Last year, his parents brought treats for his day care friends – cupcakes with cars on them — and opened the presents they’d purchased for him prior to his death, a bug light projector and a marine biologist play set. Brock isn’t sure how they’ll mark the occasion this year, but one thing is certain, it won’t be forgotten.

“I had an initial fear…and I still do…. that he’ll be forgotten,” Brock said. “He had no chance to create a legacy for himself, but he was an incredible person. We just want people to know how special he was.”

Through Aidan’s Animals, they will.

Here’s a list of NEW items employees can donate for the pediatric units at The Nebraska Medical Center:

-Toys
-Books
-Art Supplies
-Tables & Chairs
-Blankets
-Stuffed Animals
-Puzzles
-DVDs

In addition to the following med center drop off locations, individuals can bring items to the Walmart, 1606 S. 72nd St. in Omaha, as well as at Aidan’s Animals headquarters, 2809 Angie Dr., in Bellevue.

DROP OFF LOCATIONS

Clarkson Hospital lobby
Munroe-Meyer Institute, Psychology Department on the 3rd floor
Munroe-Meyer Institute, The Center for Autism Spectrum Disorders on the first floor
UNMC College of Public Health
Durham Outpatient Center lobby
Kiewit Tower Entryway
ITS building entrance
Sorrell Center Alumni Commons
Center for Healthy Living

For more information, e-mail aidansmama3@gmail.com or visit Aidan’s Animals Facebook page.