Category Archives: NACD Families

What Can Be, What Should Be, What Needs to Be: Potential is Defined by Opportunity

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Abby Amberger – Entrepreneur

by Bob Doman

This picture is from the recent wedding of Natalie Hagan, a great gal who has helped implement NACD programs with these two terrific kids—Abby and Lucas. Between these two proactive families, their schools, and caring individuals like Natalie and Debbie Hayden, the OT that referred them and has helped them implement their programs, we have a great model of what can be, what should be, and what needs to be.

Potential needs to be defined by opportunity and not by diagnosis or label. Outcomes for children with the same or similar labels can be dramatically different, with those outcomes largely being predicated on the opportunities provided.

Abby and Lucas both have wonderful families—families who have been great at getting their NACD programs implemented, advocating for their children, and looking toward their children’s futures. In both cases, the kids’ schools have learned to cooperate with and support the parents in the implementation of their NACD programs and their goals, and in addition have provided appropriate class placement and support. Both families have also successfully found help at home to assist in completing the children’s individualized NACD programs with excellent results.

I spoke of Lucas in a previous post, so now let’s talk about Abby.

Abby was referred to NACD by her occupational therapist when she was just over a year old. Abby is now an eight-year-old who will be entering the 3rd grade in a typical classroom and who is doing well academically and socially. She is involved in Girl Scouts, ballet, and she plays softball. Abby is a star, loved by classmates and everyone who is fortunate enough to know her. She is an entrepreneur. She also has Trisomy 21 (Down syndrome).

Being proactive and planning for her future, her parents have already started a business for her called, “Abby’s Mini Golden Doodles” with her own facebook page:

https://www.facebook.com/doodleloveme/

Abby is actively helping with the first litter of puppies and is learning how to care for the dogs. The plan is for her to learn dog training and handling, with the goal of developing a business involving dog breeding and dog handling, as well as a companion and therapy dog program.

One of the very difficult realities that most adults with Down syndrome and many adults with other developmental issues have is that the world is often only welcoming up to a certain point. Through the years, we have seen young adults with good academic function, good social skills, and even college degrees that could not get a job even close to commensurate with their abilities and skills. Imagine a child with Down syndrome working hard, with a ton of support from their family, academically competing with their peers, getting the same high school diploma as their classmates, having in many cases more appropriate social skills than most of their peers, and then being encouraged to pack groceries or move grocery carts upon graduation by their vocational advisors. This is obviously something that must change, but until it does, families having or starting businesses for their children is a very viable alternative for proactive families.

Abby is a delightful, happy, wonderful, contributing and beautiful child with a bright future. When everyone works together–parents, caregivers, therapists, school administrators, teachers, community members and organizations–to help the family achieve their goals for their child, there should be no limits.

What can be, what should be and what needs to be.

Potential is defined by opportunity.

P.S. – Often at the conclusion of Abby’s visits with me, she stops at the door, turns around, gives me a huge Abby smile, waves, and says, “Bye, Bobby.” Gotta love this kid!

Nine-Year-Old “Autistic” Child Spurs Community to Build Inclusive Playground

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Lucas Fritsche – My Hero

by Bob Doman

I needed to write this story about my nine-year-old hero, Lucas Fritsche. Lucas exemplifies what can be, what should be, and what needs to be. Lucas’s story is one of a committed and proactive family, therapists who knew this child needed more than what they could provide, a school that learned to work with and assist a family, and a community that was willing to help and to listen.

I first met Lucas and his family in 2014. Lucas came with a bit of a “rep.” In preschool he was notorious for biting someone daily. When he started with NACD, he was in first grade and had been globally regressing since the previous summer. At the age of six, he had already been diagnosed with PDD/NOS, epilepsy, complex partial seizures (for which he was being medicated), sensory dysfunction, low muscle tone, and digestive and sleep issues. His school had him classified as autistic. He also had severe behavior, social, and academic issues.

From a neurodevelopmental perspective, Lucas had some sensory issues, as well as issues with muscle tone, strength, coordination, developmental motor skills, physiology, and auditory and visual processing. In addition to all of that, he had a questionable seizure disorder. The bottom line was we had a six-and-a-half-year-old child who was neurodevelopmentally where I would have liked to have seen him at age three, going on four. He had lots of potential—nothing scary, just pieces to put together.

Lucas had been referred to us by friends who have a child with Down syndrome named Abby, who was then and still is on an NACD program. I will a write separate post about Abby and her super occupational therapist, Debbie Hayden, shortly.

Lucas’s terrific parents were obviously anxious to see their son do better—much better—and were doing all they knew how to do with the help of doctors, therapists, and the school. They needed more and needed to address the causes, not the symptoms. Under ideal situations, I would have pulled Lucas out of school, kept him home, and had the majority of the day to address his issues one on one. Lucas’s dad was a farmer, a job requiring more than full time attention; his mom worked full time in HR; and they also had Lucas’s three-year-old sister, who needed their attention as well. So, Lucas needed to be at school full-time, and we needed to elicit the help of the school, as well as find some people to help his parents with program after school.

After that initial evaluation, I discussed his issues with his parents, and we started on a plan to address his problems, including his behavioral issues. The reality of Lucas’s behavior was that we had a strong willed, rather intense, six-and-a-half-year-old in first grade who had the ability to understand, think, and communicate like a three- going on four-year-old and a neurodevelopmental problem—we had to address his particular pieces.

It would have been nice to wave a magic wand, if it were possible, and have advanced him three years in a blink. Unfortunately, it takes some time to normalize sensory dysfunction, address physiological issues, sleep, severe processing delay, catch up academically and create new patterns of behavior.

Second grade had its challenges. He entered a new school year, and on day four he bolted from a situation. When his teacher grabbed him, he punched her. Unfortunately, because of a recent surgery, she needed to go to the hospital. Lucas was suspended for three days. Not a great start. After he was allowed back to school, he got upset at lunch with another student and hit him. Following this incident, we set up a behavior strategy to coordinate things between his parents and the school, which ended the aggression. That year he spent 85% of his school day in a resource room with an aide who did his NACD program with him. The other 15% of his day, he was with his peers.

It was then decided that it would be in Lucas’s best interest to repeat second grade while we continued the catch-up path. This second time around, with coordination between parents, the school, and NACD, Lucas spent his day in the regular class with a part-time aide, with some pullout time for school-based therapies. Through that year, the time with the aide continued to diminish, and with his advancing processing skills and the opportunity to be with peers, his social interaction and social skills developed. A year following his suspension, Lucas received the school’s “Pirate to Be Proud Of” award, an award given to just one child per grade in the school each quarter. Academically, he went from failing to As and Bs. By January of that year all outside therapies were discontinued—they were no longer needed.

Third grade started well; however, a significant event occurred in September. During recess Lucas felt he was falsely blamed for an issue that had occurred. When the class returned to their classroom, there was no Lucas. Lucas, having in his first years of school been sent to the principal’s office on numerous occasions for inappropriate behavior, had not gone back to class, but had instead gone to the principal’s office. He didn’t go because he had done something wrong, but because he needed to report the misunderstanding of the situation, and he felt that because he was blamed, he needed to report there. Having gained audience with the principal, Lucas stated his case and then proceeded to inform the principal that the playground was too small, that his friend who was in a wheelchair could not access the playground, and announced that he wished to speak to the school board about the issue. At that point, I knew I was working with a really special young man.

In February Lucas finally got to address 50-60 community members, parents, teachers, and administrators and presented a plan to make the playground handicap accessible. (See the video below.)

Lucas’s mom is currently working with a local group to create an inclusive playground in the community; and Lucas, because of his initiative with the school, has been invited to participate and has become a key spokesman in the development of this 1.5-million-dollar project.

Lucas is now an A/B student and is doing great socially. This past June, he won a purple ribbon for his 4H woodworking project, which moves him to the state competition; and this September, he will be showing a steer at the local community fair.

Lucas has shed all his previous labels; his seizures are history as well as his medications, his therapists, and his aides; and he has gained a new image: bright, kind, compassionate, witty, smart, and my hero.

Lucas represents what can be, what should be, and what needs be. We need to look at children as individuals with unlimited potential and not as labels. He exemplifies how we can get everyone working together to help achieve the parents’ vision for their child and produce the desired results.

What can be, what should be, and what needs to be.

Potential is defined by opportunity.

P.S. – Lucas read an email I had sent to his parents where I told them that their boy was going to do great things. Lucas’s response was, “If Mr. Bob says I will do great things, then I will.” I’d put money on it.

Mark Turner – Breaking New Ground & Making New Records

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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

You Don’t Have to Be Perfect

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“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

Two A’s and a B and Lots of Smiles

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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