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.
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!
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.
Let’s just install ceiling fans in every classroom.
Fidget spinners—what a wonderful invention—as though our children need something else to distract them. Let’s give children mini ceiling fans to carry around to help them pay attention—what a great idea! If spinning things help children concentrate, let’s just install ceiling fans in every classroom.
I have been arguing against giving kids on the Autism Spectrum fidgets for years. Do some kids on the spectrum like and want fidgets? Absolutely—they’re addicted to them. A fidget feeds their sensory addictions and helps keep them seated in their classroom chair when what is being presented quite possibly doesn’t fit them and goes on way past their auditory attention span. You attend to what you can process and if the input doesn’t fit your ability to process the information or what is being presented doesn’t match your knowledge/educational base, then you don’t pay attention to it (sadly this describes most children in most classrooms). Unfortunately, the operational definition of educational inclusion for children with developmental problems has really just come down to the kids sitting in desks and not making a fuss while surrounded by typical children. The special needs children then leave the classroom for a resource room where the instruction is hopefully more targeted and appropriate for the child. So, enter the fidget. The theory is that the fidgets help the children on the spectrum pay attention and avoid being distracted. As far as I know, there has been no good research to substantiate this, but I would suspect that if the research were directed at whether a fidget would keep a child sitting for longer periods the results would quite likely be positive. If, however, the study was testing whether the children learned more or if it helped their sensory issues, I believe the answer would be no. There has, however, been extensive research on the effects of any and all distractions while driving (paying attention) and the conclusion is that they are all bad. Try driving and watching your fidget spinner spin. You can give it another twirl if it stops and tell me if it makes you a safer driver.
One of the first things we recommend parents who have children on the spectrum do for their children who engage in visual DSAs (Debilitating Sensory Addictive behaviors), is to remove or a least not turn on any ceiling fans. As most parents with children on the spectrum with visual issues know, the kids will stare at ceiling fans endlessly if given the opportunity. None of these parents will tell you that their child is paying better attention or is more present while staring at the fan. The fan takes them away—it doesn’t help them focus or concentrate. Most visual stims or DSAs involve the child playing with and stimming with their peripheral vision. Your peripheral vision picks up movement and edges, both of which are stimulated in a negative fashion by ceiling fans, fidgets, waving fingers, staring at edges, etc. Fidget spinners not only distract with the visual aspect, but also with an audio and a tactile component—they hum and vibrate while they spin. So let’s have the child’s brain distracted with extraneous visual, auditory and tactile garbage and simultaneously help build a new addiction.
I’m sure to hear from “professionals” out there, particularly occupational therapists who just discovered that children have sensory issues, but having worked with Autistic children for fifty years and having learned how to help normalize their sensory issues, I am confident that feeding their addictions is not in their best interest in the long term. If the motivation and goal is to keep them content, in their seats and quiet at the cost of their development, then. . .
Now, enter the logic that begins with the erroneous premise that if fidgets help kids on the Spectrum pay attention, then perhaps they will help typical kids pay attention. Sadly many, if not most, children have successfully learned not to pay attention already and the last thing they need is another distraction. Parents and teachers often mistake the child looking in your general direction and apparently listening as attending. At best, we often mistake listening for paying attention. Listening is something you do when you’re watching your favorite sporting event and the game is tied with seconds to go and someone talks to you about the weather. Listening is something you do when you’re talking to someone on the phone while you’re checking your email. Ask the child who appears to be “listening” to repeat the last sentence of something you just said or read to them. When we talk about learning we are talking about changing the brain and to change the brain we need to put in specific appropriate input with sufficient frequency, intensity and duration. Of the three components, intensity is the most important. Intensity means focus and focus means that I have your undivided attention. We need to help teach children to focus and give undivided attention, otherwise parents and teachers are largely talking to themselves.
If we want to be proactive and improve focus and attention, we need to do a better job of targeting the input to fit the child. Teaching algebra to a child who still is struggling with basic math isn’t going to work. Speaking in paragraphs to a child who has difficulty following a two- or three-step direction doesn’t work. Making many children sit in a chair and attend for more than ten minutes without letting them get up and move around a bit generally doesn’t work either. We need to pay attention to the individual and teach to their knowledge level so they have some context within which to associate the information. We need to be aware of the child’s processing ability (short –term and working memory) and target the structure of the input to fit them. We need to provide educational environments as free of extraneous distractions as possible—not contribute to them—and we need to focus upon the neurodevelopmental foundation and help build the child’s ability to learn, communicate and function.
Many children across the county are learning not to attend, not be present and sadly are learning that learning itself isn’t fun, isn’t exciting and that it doesn’t work for them.