Tag Archives: child development

The Power of Parents

Yesterday (March 21st, 2018) I had the honor and privilege to speak on World Down Syndrome Day to a few hundred folks in Bucharest, representatives of Down syndrome organizations and parents and therapists from around Romania. It was a wonderful group who were all anxious to learn and to help their children. From speaking with many of the parents after my presentation, they appeared to universally know that they needed a lot of help, were very receptive, and were more than ready to take control of their children’s lives.

There are a number of important points that I have been trying to communicate to parents, educators, therapists, and doctors through the years that were all pertinent and well received by this group, including:

  • Parents are the experts on their children.
  • In order to be successful, we need to work with the “Whole Child,” which requires acknowledging the parents’ expertise and giving them the training and authority to take the lead in their child’s development and education.
  • If we are to maximize neuroplasticity, we need to provide the child with very targeted input on a daily basis, the reality of which is that it generally requires if not the direct involvement of the parent, then at least the supervision of the parent.
  • Parents everywhere in the world can be empowered to help their child regardless, or even in spite of, the available “professional” help or lack of the same.

As I have worked around the United States and internationally, it has been wonderful to see parents realize that they uniquely have the power and ability not only to help their children, but that they can actually generally do a better job on their own, given a targeted neurodevelopmental program designed just for their child—a program designed to help them fulfill their vision for their child.

Perhaps it’s time for a bit of a parental revolution! If not a revolution, perhaps at least a paradigm shift.


Wheat and Gluten: Parents Beware


In recent years it has been interesting to see how the word “gluten” has gained such a huge level of public awareness. As an example, there is a standardized word recognition test we use that includes the word “glutton.” Ten years ago it would have been unheard of to have a child read that word as “gluten,” but today the majority actually do. It’s almost humorous to think that many of these same children have a gluttonous appetite for gluten.

There is some confusion as to what “gluten” is. Many people use the words “wheat” and “gluten” pretty interchangeably, so there needs to be some clarification. First of all, all wheat contains gluten, but gluten is found in other grains as well, including rye and barley. But the vast majority of gluten we consume is from wheat and products containing wheat.

So, what is the big deal? Humans have been eating grains for over 100,000 years. How could wheat and other gluten-containing grains be bad for us? And aren’t they on the food pyramid? Science does have a way of catching up, and truth be known, there are a whole lot of things we have been doing for a whole lot of years that are not good for us.

There are many issues with gluten. Some of the problems caused by gluten include digestive issues, such as constipation, diarrhea, gas and bloating; as well as fatigue, brain fog, depression, and just feeling tired. If we add to this list additional common symptoms of wheat allergy, such as nausea and vomiting, hives and rashes, nasal congestion, eye irritation, and difficulty with breathing, we are starting to build a pretty good case for avoiding wheat and foods containing gluten.

The case builds. Let’s talk about celiac disease, an autoimmune disorder that affects about one in a hundred individuals. In celiac disease gluten produces an immune response that attacks the small intestine and adversely affects nutrient absorption. If unaddressed celiac disease can lead to very serious health problems, such as Type I diabetes, multiple sclerosis, osteoporosis, infertility and miscarriage, short stature, intestinal cancers, and neurological conditions like seizures and migraines—serious stuff!

One of the benefits of seeing many thousands of children over many decades is that it affords me the opportunity to see patterns. Some jump right out at you and others emerge over years. One of the more graphic examples of the impact that such experiences can have, and which strongly reinforced some of my concerns of gluten, occurred on one of my trips to Cincinnati. In Cincinnati I stay at an Embassy Suites Hotel that offers made-to-order breakfasts. On the first day of the trip I went down to the big open area where they serve breakfast to get a cup of coffee, and I spotted my first family of the day. The child I would be seeing shortly was happily eating her breakfast of pancakes. This child, a pretty typical teenage girl, and her family came into my meeting room at 9:00. At about 9:15 while she was in the middle of taking a math test, she actually dozed off and literally fell off her chair! Her breakfast had kicked in, and rather than giving her energy it put her to sleep. As fate would have it, on my second morning I had virtually the identical experience, seeing my first child of the day eating pancakes and again falling off her chair while taking the math test. Wow! When I think of all of the children starting their school days with pancakes, biscuits, and cereals, all of which are generally accompanied by dairy and sugar, it’s no wonder that teachers have to work hard just to keep their students awake. I’ll talk about diary again at another time, but have you noticed how they have changed the dairy commercials? They no longer say, “Milk, it does a body good!” because the data has forced them to modify their statement to, “Got milk? Good for you!”

As a group I have notice that many of the children with Down syndrome who have gluten in their diets tend to have more issues with constipation and other digestive issues, congestion, low energy, and weight problems. Sadly, many parents just perceive their child as being “low energy” kids, when what they are seeing is just a reflection of their diets. Many kids on the autism spectrum and those labeled with ADHD tend to exhibit a wide range of issues that appear to at least partially originate with gluten-related gut issues which increase their stimming, DSAs, hyperactivity, distractibility, and even aggression.

I work with one teenage boy on the spectrum who generally functions very well with his academics, processing skills, and behavior who craves wheat to such an extent that he searches the cars of workers on his family farm, looking for crumbs; and if he finds even a crumb, he crashes for up to two weeks. (“Crashes” as in becomes almost non-verbal and wants to stim 24/7.) If so little can produce such a neurological crash, it makes you wonder if even a little gluten could be harmful.

I mention these kids as examples of specific responses with specific kids. I caution families all the time that the example of one can be a disaster for the many who jump on a bandwagon because one parent, or even a few, provided anecdotal reports of apparent cause and effect with a specific “treatment.” But collecting clinical data from many hundreds, if not thousands, of individuals and evaluating that against the research is what science is all about.

A very noteworthy additional piece to this puzzle is that many children crave wheat and/or gluten to such an extent that it has a very significant negative impact on their diets and nutrition. In all my years of seeing kids, without a doubt the number one food I see children crave is wheat and crave it to such an extent that it’s difficult for many of the parents to get the child to eat a variety of healthy foods. A child who is permitted to fill up on bread isn’t going to be highly motivated to try spinach. Often, the only solution is totally eliminating wheat/gluten from their diets, at least temporarily, before we can get the children to significantly expand their palates and their diets.

Are processed gluten-free alternative foods healthy? What they add to these “Frankenfoods” to make them taste good is probably not “healthy.” Check out the labels and see all the stuff they added to make the food taste good, not to mention all the added sugar. Would you believe that there are over 60 different names for sugar used on your food labels?

Bottom line: It appears that for many, if not most, of our children foods containing gluten or even “gluten free” foods are not a great choice. If you choose to keep these foods in their diets, please keep your parental antenna up and be mindful of all of the possible associated issues. It should also be mentioned that the foundation that you are working from in helping your children develop is their health. The physiology affects the neurology, and the more issues your child has, the more important it is for them to have the best diet that you can possibly provide for them. A vitamin pill isn’t going to compensate for a lousy diet.

If you choose to have a poor diet yourself, so be it; but you, not your children, are responsible for their diets.

—Bob Doman

Natalie Kling on Gluten

Natalie Kling is a Certified Clinical Nutritionist and she talks about an important subject—gluten. Natalie is one of our valued NACD nutritional advisors and consultants.

The Little Things That Shape Lives

Lincoln Logs & United States Puzzle Maps

by Bob Doman

Great Gift Ideas for Holidays, Birthdays & Special Occasions from NACD

Our staff at NACD has been busy creating lists of toys and gifts that we can recommend for parents. We have been asked time and time again to help parents find toys and gifts that will be fun, useful and that will hopefully help advance their children’s curiosity, development and education. As we have gone through this process of researching toys and gifts, we have all thought back to the gifts we bought for our own children at various stages of their development and gifts we received as children as well.

As parents, we are often in a quandary as to what to buy. Sometimes there is something our children are begging for that we may reluctantly purchase, but more often than not we wander through the stores, catalogs and websites looking for inspiration. Sadly, within days or weeks of having purchased gifts for a birthday or holiday, we find these gifts neglected and start deciding what closet to relegate them to.

Pondering the parental dilemma of what to buy for the child, I decided to look at the word “toy” and to see if we were perhaps starting off with a quest grounded in a misconceived perception. Going to the trusted Merriam-Webster Dictionary, I looked up the definition of a toy and discovered perhaps part of the problem. The significant pieces of the definition included: “something for a child to play with, something that can be toyed with, something (such as a preoccupation) that is paltry or trifling”. If this is in fact our underlying perception of a toy—a paltry, trifling thing to be toyed with—it’s no wonder most of what we buy for our children could fit under a general heading of “garbage” and often sadly, expensive garbage.

I believe what we want to do as parents is find things that are fun and entertaining, but also things that actually do something for the child. Learning can and should be fun, exploring can and should be fun, creating can and should be fun, building, designing, imagining and thinking can all be fun. These things do not sound like “toys”. What perhaps differentiates a “toy” from what we really want is a new educated perspective. What can I give my child as a gift that will be fun, but significant?

When I was a little boy, my parents, my little sister and I would often go visit my maternal grandparents. My grandfather was the custodian of his church and my grandparents lived very modestly. Throughout my childhood, there were only two toys at their house for us to play with. One was a set of Lincoln Logs and the other a United States Puzzle Map. Lincoln logs for the uninitiated are wooden dowels of different lengths notched at the ends so that they can be stacked like the logs in a log house and other various pieces that could be used for roofs, windows and such. The puzzle map had each state as a puzzle piece and on the piece, you could find the capitol and some symbols that indicated anything from what they grew or did in the state to historic landmarks. I wouldn’t want to guess how many hours I spend with these two “toys’. But, I can tell you that I built many different structures with the Lincoln Logs and enjoyed being creative and seeing how many different things I could design. I believe that because of my Lincoln Log experience I spend time as a teen designing houses and actually went to college with the plan of becoming an architect and designing energy-efficient, economical semi-subterranean houses. I was perhaps a little ahead of my time in 1965. A summer job working with special needs children changed that direction, but I have designed and build three houses, one of which is my present home. That inexpensive “toy” actually helped in making me who I am today.

I suspect that I could identify where every state was by the time I was four or five and could have drawn a map of the United States from memory by the time I was six—I can still do it. I never had an inclination to be a map maker, but I did develop a strong interest and knowledge of geography, which became a subject in school at which I excelled (there weren’t many) and has led to my traveling to all 50 states and seeing a lot of the world and being much more intellectually and socially conscious and aware than I would have otherwise been. I still remember as a child being amazed that so many of my friends had virtually no interest or curiosity about the rest of the country, let alone the world. I suspect their grandmothers didn’t have puzzle maps at their houses.

The right things at the right times can have very big and significant impact.

Parents, grandparents, aunts and uncles, take some time and give some serious thought before purchasing a gift. See it as an opportunity to help shape a life—that certainly is not a paltry or trifling thing.


To view the list of gifts our NACD staff has put together, visit:


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

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:


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

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.