Tag Archives: kids

Mark Turner – Breaking New Ground & Making New Records

Mark Turner, trick skiing at the 2015 World Disabled Water Ski Championships, Sacramento, California

Mark Turner, trick skiing at the 2015 World Disabled Water Ski
Championships, Sacramento, California

One of the great rewards of my work is hearing updates from families I’ve seen in the past. Now that I have been working with kids for fifty years, some of these kids are actually getting fairly old themselves. I recently heard from one of the families I worked with in the 80’s and surprisingly, also heard from two other families that I hadn’t seen in decades on that same day. It was a very nice day!

When Mark Turner’s mother wrote to me to let me know about the terrific things Mark was doing and to thank me for the help we had given her when he was a young boy, I was surprised, as I was immediately able to picture Mark, his Mom and to recall specific events from his evaluations. At NACD we all refer to the kids as “Our Kids”—not patients, clients, labels or diagnoses. The families of “Our Kids” are “Our Families”. I don’t know to what degree most of the families perceive others on our team or me as part of their families except for obvious exceptions, like those who refer to me as “Uncle Bob”, but we do feel like part of theirs and feel honored to be able to help them and participate in their children’s development.

Mark is doing great and breaking new ground for those with disabilities, but I will let his mother tell a bit of his story. Needless to say, I am very proud of Mark and his Mom and really appreciate their taking the time and reaching out to me. I hope they can be an inspiration for others, they have been for me.

—Bob Doman

The following is a testimonial provided by Chyril Turner and is reposted from The National Association for Child Development – Testimonials – Mark Turner:

It is natural for parents to feel concerned about how to help their children live fulfilling lives. Parents of children with special needs have additional concerns. My son, Mark Turner, was nine days old when he became paralyzed due to complications related to a congenital heart defect. He is now 39 years of age and enjoys a very rewarding life. We attribute a good deal of his success to the program developed by Bob Doman and the National [Association] for Child Development. I am so grateful for all the recovery Mark has experienced on this program and have the peace of mind that comes from seeing him achieve his dreams. Mark’s story is shared in the hope of inspiring others to believe in themselves, do the rigorous work that it sometimes takes to meet life’s challenges and to follow their own dreams.

Mark’s paralysis occurred in the lower portion of his body. He was originally placed on a traditional physical therapy program that utilized the best practices traditional medicine had to offer at that time. He made good progress and yet, when he was two years old, I was shocked to learn that the next phase of his program would be occupational therapy. The new goal would be to teach him to cope with his special needs. The widespread belief at that time was that significant neurological return was not likely to occur after two years from the time the paralysis began. Giving up hope for recovery was unacceptable, leading me to search for a program that would further the neurological development that he was still experiencing. Eventually we connected with NACD.

Bob Doman and his team, taught Mark’s brain about the part of his body that did not adequately receive neurological signals. Mark participated in the NACD program for about twelve years and made significant progress. One of my favorite examples occurred when he was about four years old. He was sitting in the seat of a grocery cart facing me and talking excitedly about something. All the sudden, he started moving one of his legs from side to side. Wow! He had moved this same leg from front to back, but never side to side! It still touches my heart to recall this precious moment.

While on the NACD program Mark developed a great deal of confidence in his physical abilities, and his self-esteem was significantly enhanced. He came to believe he could do anything he wanted to do in life and Bob was one of the biggest supporters of Mark’s ever growing confidence.

When Mark was 13 years old, he began participating in disability waterskiing. He loved it and his desire to improve his skills also became a strong teacher of his brain. Every time he would set a goal to reach his next challenge in slalom, trick and jump skiing, his brain had to figure out how to use his body in a new and very specific way related to each type of skiing.

Mark eventually became a national champion and was a member of the United States Disabled Water Ski Team competing in five world events. This provided the opportunity to travel throughout many countries, including England and two world events in Australia. He received the title of World Champion in slalom skiing, and has held two world records in this event. He has also held the title of Best All Around (slalom, trick and jump) for his division.

Mark is now making world history in a new way. A few years ago, he was doing exhibition skiing at tournaments for skiers who do not have physical disabilities. Exhibition skiing is a very important way to get the word out about disability skiing. While he was watching the other skiers, Mark realized he had a good chance of competing and placing. He has become the first skier in the world with a disability to win medals in his age category at tournaments for skiers with regular needs. Currently, he has placed in the top tier at the state and regional levels and has skied in the national championships.

In addition to his focus on tournament skiing, Mark works full-time for a major international travel company. He also serves as a volunteer at clinics, where he teaches people who have paralysis, amputations or visual impairments to learn to ski. He provides individual coaching as well for established skiers with or without special physical needs. Mark is also one of the co-creators of a contemporary documentary film about the history and empowerment of disability water skiing, H2O Effect: Disability Water Skiing From Beginning to World Championships! Here is a link to this 33 min. film:

Much of Mark’s incredible drive and self-confidence can be directly attributed to the tenacity he developed while participating in the rigorous NACD program. He and I would like to thank the team at NACD for all they have done, and to thank everyone who has supported this extraordinary organization in any way. To all the parents of children in programs at NACD, may you experience the kind of peace of mind and joy that we have found with NACD guiding the way.

Sincerely,
Chyril Turner

What is Natural? I Thought I Knew and Still Think I Know

“Breast Feeding is Unnatural.”

That was the headline I saw the other day when perusing the news. My first reaction was, “WHAT? What is this country coming to?” An article/study in Pediatrics entitled, “Unintended Consequences of Invoking the ‘Natural’ in Breastfeeding Promotion,” written by Jessica Martucci and Anne Barnhill, essentially claims that “referencing the ‘natural’ in breastfeeding promotion—may inadvertently endorse a set of values about family life and gender roles which would be ethically inappropriate.” I’m sorry, but “natural” actually does fit my set of values. How extreme can the obsession with sexuality and gender get?

When I saw this headline, it immediately took me back to UCLA in the early ‘80s. I was doing an early morning news show that was being filmed at UCLA’s Child Development Center. The station brought me to UCLA so I could provide an opinion about UCLA’s daycare perspectives. We did the interview in a huge room that was full of babies, toddlers and lots of noise. The children were on mats and in various cribs and there were students interacting with some of the children, while others slept, cried or expressed varying degrees of displeasure. As we began the interview, the head of the department made a statement that literally left me in a state of shock. She said that young children being home with their mother was UNNATURAL!

To gain a bit of historic perspective, common use of daycares and preschools is really a relatively new phenomenon. Daycares actually date back to the late 1800s as facilities for working mothers. But even back in the ‘50s it was rare for a child to go to daycare. There weren’t yet preschools and the majority of children didn’t start school until they were five or six. To further put things in perspective, back in the ‘50s when we were having air-raid drills in school and were hearing “better dead than red,” we were traumatized hearing stories about Russia, where little children were put in schools as early as two or three years of age—horrifying!

Back at the time of my interview at UCLA, formal daycare was still rather rare. Working moms generally relied on family members or informal situations where stay-at-home moms would take care of another child or two.

In 1964 President Lyndon Johnson created Head Start, a program that was initiated as part of his “War on Poverty” to help meet the needs of preschool aged children from low-income families. Head Start was and is a good thing. Providing early educational opportunities for children from disadvantaged homes is a good thing. Children from disadvantaged families absolutely do better with early childhood educational opportunities.

Today, however, educational propaganda has created the distorted perspective that all children are better off in daycare and preschool and that they are, in fact, being deprived of opportunities if they do not attend. Economic reality is such that many mothers need to work when their children are under five. There are mothers who choose to have careers and need nannies, daycare and preschools, which is fine. Certainly, the better the daycares and the preschools, the more opportunities those children have. But let’s not throw the baby out with the bath water. An involved dedicated mother, who after all knows her child better than anyone else on the planet and who can provide her child with individual attention throughout the day, is not only doing something that is quite “natural,” but is probably optimizing her child’s first critical years of development. An informed, dedicated parent given the right tools, can do absolute wonders—quite naturally.

—Bob Doman

 

 

You Don’t Have to Be Perfect

You don’t have to be perfect.

This insightful and profound statement is coming from this soon-to-be eighteen-year-old lovely, trilingual, beautiful and wonderful young lady who just happens to have Trisomy 21 (Down syndrome)—Arianna Dinwoodie-Palmes.

Arianna lives in Barcelona, Spain. She reads and speaks fluent Catalan, Spanish and English. She attends a school where classes are taught in Catalan and Spanish. She learned English from her dad, who is from the United States. She takes a theater class once a week with “typical” kids, personally takes care of enrolling in the course every three months and pays for all her classes. She also does gymnastics with kids who have some learning challenges. She lives in an inclusive world. She navigates the very big, chaotic city of Barcelona on her own, taking public transportation to and from school while meeting with friends for movies, lunch and other social events. She loves Zumba, singing and doing research projects on the Internet and is very concerned about ecology and pollution. She is finishing high school this year and is looking forward to trade school next year, focusing on administration, sales and customer service. She is a happy, caring, typical teenager, who also happens to have Trisomy 21 (Down syndrome).

The video (see above) was Arianna’s idea and she wrote her own scripts. These are her unedited thoughts and words—in three languages! Arianna’s level of function makes her normal. Arianna’s insight, personality, smile and overall goodness make her exceptional—exceptionally wonderful!

You don’t have to be perfect.

Such a simple, obvious, but profound statement, particularly when viewed in light of the still staggering numbers of fetuses identified as having Down syndrome that are aborted. Recent research states that in the U.S. there is a termination rate of 67% of fetuses following a prenatal diagnosis of DS. None of us are, none us will ever be and none of us need to be perfect.

Somehow our enlightened, educated and politically-correct society has created and perpetuated the myth that some of us are not miracles of creation, that we do not have limitless potential and thus are condemned by myopic prejudice to be deprived of the right to live; or are often condemned by perceptions of limited potential and given limited “appropriate” opportunities that are commensurate with the perceptions.

Arianna is one of our NACD kids. She has been on one of our TDI Targeted Neurodevelopmental Intervention Programs since she was a year old. She and thousands of other NACD kids are reflections of what can be, given the opportunity. Defining opportunity as having dedicated proactive parents who, when given the tools and the vision, can truly provide their child with an opportunity. We all need to be perceived as having unlimited potential and giving the opportunity to achieve, but we also need to realize that, “You don’t need to be perfect.

After all, isn’t being less than perfect what defines us as being human?

—Bob

He Has Down Syndrome B’Gosh

I saw this great story about cute little Asher and his wonderful mother Meagan Nash. Our children with Down syndrome and other developmental issues have a place in our world, can develop beyond most peoples’ expectations and can make contributions. For most of these individuals, it’s not the government, the institutions or even society as a whole that really makes the difference. It’s mothers—mothers who assume the primary responsibility for their children, who work with their children, help them develop their potentials and who realize they need to be not only their child’s cheerleader, but their advocate. Proactive mothers and fathers make the difference—for all children.

Two A’s and a B and Lots of Smiles

I believe we are at about thirty-three thousand feet and the pilot is about to tell us all to stay put as we enter a storm system over the Rockies. I’m heading home. Today was my last day on a two-city trip. On this trip I saw adults and kids in Cincinnati and St. Louis.

As I’m heading home I can’t help but smile as I think about the kids and adults I’ve seen over the last two weeks and all we shared.

NACD Bob Doman Blog - AllyMy trip started off with Ally. Ally is one big giant perpetual smile. She smiles as she comes in the door, she smiles as I speak with her parents about what a “turkey” she can be, she smiles after she shows me her walking and she smiles and waves goodbye—“See ya Bob.” Ally is twelve and is now, after lots and lots of work, starting to walk on her own. She is in a typical classroom and doing well academically. She still needs large print, but reads well. She talks up a storm and is generally a delight, although she loves to torment her mom and dad. I first saw Ally when she was 10 months old. Ally was shaken by her babysitter when she was four and half months old and severely brain damaged. By the time I saw her, just months after her injury, she had shunts in both sides of her brain to relieve the pressure, had suffered retinal hemorrhages and essentially had no vision, was diagnosed with infantile spasms (severe seizures), was on two different seizure medications and was recovering from breaks to both legs and her left arm. Devastating, but Ally’s parents are exceptional folks and have worked wonders with her. Every time I see Ally I remember where she was; and although she has many pieces yet to be put together, she is a trooper, doing great and smiling!

NACD Bob Doman Blog - Abby - Down SyndromeSt. Louis started with Abby, a seven-year-old ball of fire. She runs in the room with her mom and throws her arms around me and gives me a big smack on the cheek. Abby has Down syndrome, but it surely isn’t slowing her down. She’s in a typical 2nd grade class—academically and socially right there with her peers. But I’d be willing to bet that Abby generates more smiles and warms more hearts per minute than 99.9% of the kids on the planet. Typically, when she leaves her evals she turns, waves, throws me a kiss and impishly says, “Bye, Bobby.” More smiles!

Today, my last day of the trip, I saw Brae who just started on program in February and today her two sisters came in for programs. Both of the girls are going to be absolutely brilliant. Brae has a genetic disorder that has the long name of Inverted Duplication Deletion 8p. To her family and me, she is just cute, fun, smiling Brae with unlimited potential. Today she came in and from across the room looked at me, eyes focusing and working together, converging and gave me a huge smile—a smile that remained in place throughout our time together. Today I got to see her walk by herself without as much as a finger of support. Big deal! Gargantuan deal—wonderful!  I also got to hear her talk. Big deal! Gargantuan deal! And I got to see her smile, I got to see her mom smile and when they left, her mom gave me a big hug and we shared the miracle of her girls. Brae and her sisters made my day special. Another in a stream of literally thousands and thousands of wonderful days filled with incredible people.

 

 

As I sit here in the plane and think about the trip and the incredible range of issues that needed to be addressed, I ponder, as I do in virtually every waking moment and through most of the night, how do we do this better. I know there are a lot of things our kids and adults aren’t doing yet, that we need to figure out and work on, but as I review our time together, we had smiles—big smiles and lots of them. Wherever they or their children are on their voyage, however far we are striving to go, everyone of them, everyone of the parents were smiling about who their kids are today, valuing them for who they are and appreciating where they are on their journey. We were all thankful for them.

We see kids for who they are, for what they can do, for what joy we can bring to their lives and what joy they can bring to ours and others’ and we all share in the joy of watching them grow. I feel humbled and privileged to be able to participate in the process.

Thanks!
—Bob