by Bob Doman

Many parents of special needs children, as well as children with attention and learning related problems, mistakenly believe their children are receiving a good, real opportunity for development and education from the schools. With rare exception neither public nor private schools are equipped to provide these children with a real opportunity. What does opportunity look like, and how do we help the children realize their innate potential?

A sad reality is that the typically perceived potential for all our children, and particularly our special needs children, is not truly based on their innate potential, but rather it is defined by the very limited opportunities provided by public schools, and most private schools, and the outcomes they produce.

Opportunity Defines Potential and Determines Outcomes

The range of individual function in a typical or special needs classroom is tremendous. In a typical classroom the reading, math, and other educational levels range in years, not months; but everyone is generally placed in the same curriculum and at the same spot in the curriculum. The instruction is based on the month and year of where the class is in the curriculum. In addition to the huge range of educational levels in the classroom, the level of individual processing abilities (short-term and working memory levels, the ability to process and understand the information) varies tremendously, as do the individuals’ actual knowledge base, and learning strengths and weaknesses. Our children are all unique; and the more targeted their education is to their specific needs, the more effective.

The greater the developmental and learning challenges, the greater the variability of function, the more specific their requirements, and the greater the need for targeted intervention– “targeted” as in designed for the individual child and administered one to one.

How does the public education system determine potential and define opportunity?

Perceived potential defines what is determined to be appropriate educational and therapeutic opportunity, as defined by the public educational system. The potential is based on expectations and prognosis, while the prognosis is based on the past failures. The past failures in turn are the reflection of the realities of limited opportunity, the result of budget restraints and previous outcomes.

The Reality of School Aides

If your child is “fortunate” they are provided with a 1:1 aide. Parents generally mistakenly believe that the aide is providing a targeted program designed for your child. This is rarely the case. Often the aide assists your child in walking through a dumbed down version of the school curriculum or a version of the “special” curriculum. Aides generally assist and prompt the child through whatever is deemed appropriate work, rather than providing targeted teaching. They are not teachers and are not expected to be. They aid, as in assist, which often impairs rather than facilitates real education and often results in prompt dependency.

Physical, Speech, and Occupational Therapy

Many parents believe that their children who need specific therapies need to attend school so that they can receive the therapy they need. The reality is that one or two twenty to thirty minute sessions of “therapy” per week is not enough to produce significant change and certainly does not define a real opportunity. Very few school therapists would really define what they are providing as adequate. But, once again, outcomes predict potential and thus determine what is considered an appropriate opportunity. Sadly, the same criteria has been used by insurance companies to define appropriate opportunity, and thus limit how much therapy they will cover. Fortunately, most children with developmental issues do not need rehabilitation therapy; they need developmental opportunities that generally do not require a therapist.

Neuroplasticity

All individual development reflects and is the result of neuroplasticity, the process by which the brain changes in response to stimulation. The foundation of neuroplasticity is targeted input delivered with frequency, intensity, and duration.

Targeted input refers to specific input, specific as to the child; and because every child is different, the program needs to be designed around a comprehensive understanding of the whole child. All children are complex; and the more specific issues the child has, the more complex they are, as are their needs.

Labels

When schools started providing “special” services for special needs children and those with attention and learning challenges, the need existed for them to have administrative labels, so as to classify the children. The labels and classifications served as a means for the system to lower expectations and an excuse for the system to fail. One hundred or one hundred thousand children labeled as dyslexic or as having attention deficit, as an example, are all different and are categorized and stigmatized by a symptomatic label. They don’t have a disease, let alone an incurable disease; and they are all different. If they are all perceived as the same, then their needs are perceived to be the same, and their opportunities dictated by the expected outcomes. All the children with these labels are unique and complex, as are all labeled children, each with a multitude of different significant pieces that need to be understood and addressed if they are to be given a real opportunity to achieve their unique potential.

The Whole Child

You cannot successfully address a piece of a child without a comprehensive understanding of the whole child.

Who are the world’s greatest authorities on a specific child? The parents.

It is impossible to understand a child and provide a child with a real opportunity without the parents being in charge, the parents who know the whole child and who are ultimately responsible for the future adult. A dysfunctional 30-year-old child is not going to be living with their old teacher, or school principal, or therapist; they are going to be living with their parents or in some form of institution

What is the whole child? To understand the whole child, you must know and understand their history from birth to today– their birth history, their medical history, their developmental history, their educational history, their social and behavioral history. Who they are today is a reflection of their entire history and much more, including: any and all neurological/structural and physical issues, their sleep, their diet, current medical issues, behavior issues, social function, how they are on days when they don’t feel well or didn’t sleep well, what their relationship is with their parents, siblings, grandparents, extended family, friends, with their church or other organizations, what is fun, how do they engage themselves, how much screen time do they have, how is their vision, their hearing, their auditory and visual processing, short-term and working memory, do they have any executive function, exactly what do they know and understand, what are they afraid of, what do they like, what do they hate and on and on and on. All of these factors and many more need to be part of the consideration as to what they, these unique children who have never existed before on the planet and never will again, need. How do we target them?

How do you look at a label and determine what is appropriate for any child? You simply cannot define potential nor adequately work with a piece of a child without understanding the whole child.

Public education may pay some lip service to parents, but parents are generally perceived as the people the school sends the child home to at the end of the school day.

Reactive vs Proactive

Schools apply a reactive management strategy to the child’s development and education, meaning that the goals and thus the applications are not based on a long-term vision of what can be based on appropriate opportunity, but what is based on limited opportunity. Examples range from a perspective that the child really doesn’t have the potential to be functional in reading and math, therefore the “reading and math” programs provided aren’t really expected to produce a long-term result of someone who can actually read and understand math. If the perception is that a five-year-old really isn’t going to be able to speak and use language, then augmentative communication is the reactive approach. If the perception is that the child will never be an independent walker, then the reactive approach is not aimed at that goal, but rather life in a wheelchair or possibly a walker.

To work with a child proactively means that you are doing things today understanding and anticipating the long-term effects. What is seen as potential dictates the steps needed to achieve it and to work proactively, not reactively.

Shared Vision and Goals

Everyone involved with a child needs to share a common vision and goals. The primary voice in determining the vision and goals needs to be that of the parents. Parents can be assisted in this process with the help of those who have worked with and through families and their whole children for many decades.

A Better Way: Plan B

Home/Family Based Whole Child Comprehensive Programs

NACD (National Association for Child Development) has for over forty years been at the forefront of redefining opportunity and potential and has developed a toolbox of over 3000 specific techniques that can provide targeted intervention within the home and applied by parents, siblings, and caregivers. NACD focuses on providing individualized, home-based programs to children with special needs, those with learning and attention issues, as well as “typical” children, optimizing opportunity, changing perceptions and outcomes. This approach offers several advantages over public schools:

1. Individualized attention: NACD programs are tailored to the specific needs of each unique child, rather than labeling and plugging the child into an “appropriate” curriculum.
2. Home-based programs: NACD programs are best done at home five days per week. Each comprehensive targeted program maximizes neuroplasticity through short, intense activities that can be provided many times a day, rather than a couple of times per week.
3. Flexible scheduling: Parents can choose when to work with their child, which allows for schedules that work best for the family. It also provides the opportunity for targeted social interaction outside of the school walls. It’s not the quantity of time that a child spends in the company of other children, it is the quality and structure of the time. The reality is often whether or not a child can survive the social world of schools, not if they have learned how to appropriately interact and have developed positive social skills and lives.
4. Holistic approach: The NACD program focuses on the whole child, not just their academic needs, by addressing health and nutrition, motor skills, cognitive skills, speech, social and emotional development, behavior and much more–the whole child, and the whole child within the context of the family. NACD is constantly developing, exploring, and assessing new methods and treatments, bringing state of the art information and resources to bear on the child’s issues and needs.
5. Targeted input, delivered with the needed frequency, intensity, and duration by the people who know and care the most defines a new opportunity and changes outcomes.
6. Tri-annual evaluations and ongoing support, coaching, and interaction help keep everyone on target, working effectively and efficiently, and moving together to achieve the vision.

Learn more about how the NACD Program helps parents homeschool children with special needs:

      Reprinted by permission of The NACD Foundation, Volume 36 No. 3, 2023 ©NACD

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https://apps.apple.com/us/app/nacd-speech-apraxia/id1625372283

Ogden, Utah
July 30, 2022

The National Association for Child Development, an innovator in all aspects of child development since 1979, announced today the re-release of their very effective and successful app that addresses Childhood Apraxia of Speech/dyspraxia, as well as apraxia of speech in adults.

This very successful and fun tool has been used by parents, individuals, and speech therapists alike. With the Speech Therapy for Apraxia app, targeted speech therapy can now be accomplished on a daily basis right at home. Frequent application fulfills one of the basic requirements needed to trigger neuroplasticity and produce real change.
In keeping with NACD’s mission to provide affordable services and tools to families around the world, this comprehensive app is being made available for only $9.99

Speech Therapy for Apraxia app reflects NACD’s decades of international work with tens of thousands of children and their quest to find, develop, and utilize better and better tools to assist families in helping their children develop to their full potential.

Speech Therapy for Apraxia is one of a series of speech apraxia apps being re-introduced by the National Association for Child Development. These apps are developed by NACD’s team, including a certified speech-language pathologist.

“It was important to us to develop an app that parents can use at home for speech practice with their children, but that is also an effective tool for therapists. The emphasis of the app is the child’s production. The parent or therapist should be an active participant in order to provide the user with feedback, reinforcement, and additional modeling.” Lori Riggs, Speech-Language Pathologist at NACD.

This comprehensive app permits targeted application and includes the following features:

• The user can choose from 8 different consonant groups- a total of 19 consonant sounds.
• Customization permits the user to practice at a chosen level within each group.
• Detailed instructions describe how to choose appropriate groups and levels.
• Moves through a progression of 8 levels for speech motor planning.
• There are illustrations and audio provided for each syllable.
• Includes options that permit the user to repeat levels, reset, or move to the next level.
• Can be used as a straight articulation drill for specific phonemes.
• Simple enough for a parent or adult user to progress through by themselves, but comprehensive enough for a therapist to incorporate into their targeted program.

The app is not intended for independent use by children.

“For decades we at NACD have had the goal to educate and assist both parents and professionals in order to develop and modify present therapeutic interventions. Successful application of neuroplasticity requires targeted high frequency, preferably daily intervention, to achieve desired outcomes. Part of our mission has been to develop systems and tools to assist in accomplishing this goal.” Bob Doman, Founder and Director of NACD.

About NACD

The National Association for Child Development is a unique organization with a distinctive family centered approach to child development. Founded in 1979 by Bob Doman, NACD has worked internationally to help tens of thousands of families remediate developmental issues and enhance the development and global function of their children. NACD has developed an approach to human development, the achievement of human potential, and the remediation of developmental, educational, and neurological problems that is based on the gestalt of the whole individual and an understanding of neuroplasticity. The efficacy of NACD’s Targeted Developmental Intervention has been demonstrated with the full range of individuals, from comatose to gifted.

NACD designs comprehensive targeted interventions that are implemented by family and caregivers within the home on a daily basis, supported and overseen by NACD’s staff of professionals and coaches. NACD has evaluation sites around the United States and internationally.

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I will never forget the feeling I had the day when Jack was labelled as autistic, he was five years old and had received a heavy educational input from myself and my supportive family with reading, math and general learning. My husband and I had left our jobs to take our son to “the best” child psychologist in London, primarily because the private school Jack was attending in Andorra had asked us to withdraw him. The schools’ headmistress said that they did not know what was wrong with him, but they did not have the facilities to educate him. This was quite a shock to us because from when he was a baby, I had seen how intelligent he was and I thought the milestones he wasn’t making was a result of him going to a multi-lingual school for the past year, as before he went to school, he was reading well for his age and showed a great memory for stories and I had no reason to believe he had any issues. My husband and I work on Super yachts, myself as a captain and he as a chief engineer. Before we left our jobs for the trip to London, we had had an amazing guest, who was a pioneer in reducing biological age and in practical uses of increasing knowledge of neuroplasticity. We had mentioned to him why we were leaving our jobs and he gave us the following parting words of advice:

1. Do not take the psychologist’s opinion as the only option, because they specialise in only one specific part of the child, which is a result of the problem.
2. Ask about possible effects of other factors, such nutrition and genetics.
3. Read the book “The brain that changes itself” before you make any major decisions. (This was key to us understanding what to look for in the solution which we finally found in NACD).

After a very expensive, one hour evaluation of Jack, the psychologist in London advised us, in no uncertain terms, that I should move to London and put Jack in a school specialising in children with autism (which he was the resident phycologist for), he advised us that Jack would regress and he would be nonverbal by the time he was 8 years old, he would never be very academic, although he was clearly intelligent by nature and if he did manage to have a career as an adult, he was very likely to grow up to be a selfish and self-involved, egotistical adult, who would have little thought for others. He would not be able to do math or learn to play music, as that part of his brain would never function properly.

My whole world fell apart, we asked the psychologist if there could be any links to genetics or diet that could help him, but he shut us down. We left his office feeling completely overwhelmed. How could we have an autistic child, could there be such low expectations of child of whom we had seen had a natural high intelligence level, who was happy and fun to be with and furthermore, what could we do to help him?

Luckily, throughout our training and careers, we have been taught not to mop up the symptoms of a situation but to find the root cause of the problem and to find a solution to fix these problems. My husband instantly identified that we should find somebody who understood how the brain works and how to fix the neurological root cause of Jack’s disability.

After over a year of home schooling and trying different methods to help an autistic child without improvement, I came upon The Listening Programme (developed by NACD), which is a music recording on an iPod, linked to bone conducting headphones, which trains the ears to learn audible frequencies. Within the first month of using TLP, I saw the first real step forward, in what had been over 12 months of intensive and soul-destroying work, one-on-one with speech therapists, occupational therapists and many other experts with no steps forward and so I read all the recommendations that parents had given on TLP’s website, hoping to find like-minded parents that had found the solution we were looking for; luckily, one of the recommendations mentioned NACD. I searched the internet and was so delighted when I realised that their method of working with disabilities was based on fixing the root cause of the problem, through a series of proven exercises, based on an understanding of the ‘plastic brain’, the effects of neurological issues and how they manifest themselves in symptoms. NACD had managed to help a range of children with disabilities of all kinds of different labels as well as “normal” and gifted children.

After an initial interview with an assessor, we were sent an introductory audio file to listen to, where the NACD method was outlined. I was a little overwhelmed hearing about digit spans etc, but intrigued and totally onboard, so a short while later, in September of 2014, with full enthusiasm, we went to Chicago for Jack’s assessment. Ellen Doman completed a one-on-one assessment of Jack in a hotel room office, whilst we sat anxiously in the foyer. She then brought us into the room and explained how she had identified a number of issues including: sensory dysfunction, developmental motor issues and poor auditory sequential processing amongst other developmental problems. She explained that he was ‘stimming’ and told us what this meant, I still remember being on the phone to my mum during the 4-hour drive home, explaining that Jack was watching movies in his head at hundreds of times the speed and getting a dopamine kick from it, and that this was more addictive than morphine and when he was ‘in a world of his own’ he was actually completely immersed in these movies. It took a long time for this to sink in. I was hesitant at first, as it seemed so far-fetched, but over the years, the theory was proven again and again and when Jack was communicating well enough, he explained this in his own words. Ellen also told us where he was in his fine and gross motor skills, specifically linked to where he was neurologically and noted that Jack was using his peripheral vision over his central vision and she explained why this was not good.

Ellen reassured me that there was a lot we could do with Jack to get him back on track and I was very impressed with the systematic and detailed approach. She said that she would send me a program for Jack and to contact them with any questions or concerns, but in the next few days, while she put the program together, we should avoid dairy, reduce sugars and gluten, not watch any movie or TV shows more than once and get as much time reading together, engaged in games and conversation and to go on walks etc as much as possible. We saw a big improvement within two weeks, particularly in Jacks’ responsiveness and use of language, which we later confirmed was due to stopping milk is his diet as he was lactose intolerant (something I did not really believe in before I saw the evidence in Jack). Our journey on a new path had begun.

The First Program

We were somewhat overwhelmed with the first few programs as they were educating us on how to help and improve Jack’s issues. With the whole family completely involved in every step of the way on how to teach and retrain Jack. NACD reset the way we understood education (My mother lives with us and was the primary teacher because I have a demanding job and my Mum is trained in educating young children and so it took her a while to adapt to these new methods). The program made sense as a whole, but we could not quite see the reasons for some of the tasks until a year or so later, but we started working on the basic fundamentals of a properly functioning brain, starting with developmental motor activities, as well as continuing with TLP and implementing many basic sequencing exercises. Ellen explained where Jack was with math (which was a lot lower than we had realised) and how to teach him the meaning and sequence of number and the difference between math facts and math problem solving. We learned how to teach reading with flash cards of the first 1,000 words and the importance of frequency, intensity and duration. Having the training videos online to access whenever we needed a refresher of how to complete a task has been incredibly useful and the simplified approach to teaching math has helped us teach the children in a fun and engaging way.

The program progressed with Jack and was adapted to suit his level of ability rather than his age. We hadn’t realised how far behind he was on basic neurological assessments initially, but over the years, he has caught up substantially and academically, he has overtaken his peers.

One of my most vivid memories from before NACD, was watching a mother with her 7-year-old boy in Barnes and Noble, she was discussing a topic in the Encyclopaedia with him and they were happily engaged in a two-way conversation. My heart sank and my world fell apart as, I thought, I would never have this relationship with my son, as he would be non-verbal, never mind able to hold a conversation, but now Jack is thriving, he is almost fluent in Spanish, has basic Chinese and French, is learning to study independently and is able to take on any chore in the house. Jack has also just published his first book called “Albert and the Karnikans” in the UK, a process that he had a lot of involvement with, (this is one of many stories he has in his creative space at home). Jack enjoys playing the piano and cello, which I will admit was a struggle for the first few years, he has a very high level of vocabulary, actively engages in conversation and discussions (although his is still quite shy in social situations) and last year, at aged 11, he scored at sophomore college level on his math test. Jack loves to read philosophy and history and writes his own computer code to make basic computer games. In his free time, he draws comics and tells and re-enacts stories and plays with his sister for our entertainment. In short, he is thriving.

Our daughter, Charlotte, is now 10 years old. She was an “average child” when she began NACD at 4 years old (we removed her from school when they asked us to take Jack out). Charlotte loves maths and she tested sophomore level math at 9 years old. She scores 12 in her digit spans in person, 9 on Simply Smarter, which makes more advanced learning in STEM subjects and coding more enjoyable and engaging for her. About a year after starting on NACD, Bob and Ellen discovered she had issues related to reading that a psychologist would have labelled as dyslexia and with early intervention we were able to fix this issue with simple methods that we easily implemented into our daily program, she now tests at reading grade 12 and is an avid reader. She is happy, highly capable and is becoming an independent learner who loves history and science. She plays the harp, piano and violin and is almost fluent in Spanish and is learning Chinese and French.

NACD has made us realise that we can all reach our full potential. The methods we have learned and implemented into improving ourselves has had an everlasting positive influence on us as individuals and as a family. We have all developed with Jack and Charlotte in the process of learning the NACD methods, we have a greater understanding of how the brain works, specifically, how we learn, which has led to a great desire to help other families and children who are experiencing the fear and frustration that we had in our lives only six years ago. All of our family have improved in so many ways and as a result of NACD our lives are so much more enriched, we have become better leaders, communicators and able and willing to take on new academic challenges that otherwise may have been daunting.

My mother, who is now 72 years old, is improving her own brain capability and is reaching her own true potential by completing NACD’s, Simply Smarter in her free time. She is learning Spanish and is still teaching both children English and math.

If I could give advice to other parents it would be to trust the incredible knowledge that the team at NACD have from their education, training, years of experience and teamwork which they draw on with great care, when making up a new program which is specifically designed for each child.

Myself and my family will be forever grateful to Bob, Ellen and everyone at NACD for giving my children the chance to realise their true potential and for making us a stronger and happier family, we intend to continue with NACD for the rest of our children’s journey through education.

The NACD Foundation, Volume 34 No.1, 2021 ©NACD

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When our son was about four, we took him for a consultation with a well-known pediatric neurologist. Because Ben used just a few words, made little eye contact and showed little interest in other children, the diagnosis of Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) was no surprise, yet it was still crushing to hear it. There was no “cure” for PDD-NOS the doctor said, but to cope with some of the symptoms, she recommended speech and occupational therapy, along with Applied Behavior Analysis (ABA).

Soon after receiving the diagnosis, Ben started speech therapy and a daily home ABA program and went to an ABA center twice each week. We also entered a season of intense biomedical interventions and supplements. We consulted with DAN doctors, did blood tests and sent blood overseas, changed his diet and used supplements. With all of that, Ben began improving a little, but something was still missing. The various professionals working with our son didn’t really understand some of our unique requests and even with all this help, we felt there was more possible. Intuitively, we knew that an integrated method would help our child best, but had no idea where to find it. Luckily, while researching homeschooling online, we came across a message from an Australian mom who spoke about an integrated approach to treating Autism. This is how we learned about the NACD.

At first, in addition to implementing the NACD program, we continued with ABA and speech therapy (ST). Later, when we saw that the NACD speech activities were effective, even more so than what we had been doing until then, we discontinued ST. Meanwhile, Ben continued to participate in an ABA social skills group for the extra local support since we were the only NACD family in South Africa at that time.

Before NACD, Ben insisted on watching the same movie over and over again, obsessed over trains and cars and stimmed incessantly on their wheels. He also laid on the floor and looked at things sideways. We learned from NACD that he was using his peripheral vision, which is not unusual for children on the spectrum to do, but which NACD identifies as a harmful DSA or Debilitating Sensory Addiction. He was not interested in other people and if he didn’t want to do something he just wouldn’t comply and wouldn’t focus on the person addressing him. Within six months of being on the NACD program however, Ben’s ability to function improved so dramatically that we could tell he was beginning to connect with our world.

Now, after five years of working with the NACD, when people meet Ben for the first time they can’t tell he has special needs. He enjoys judo, gymnastics, Sunday school, woodworking, drama, art, and music classes—all in an environment that is not controlled by mom and dad. He integrates well with other children and gets along just fine. He still has some mannerisms that make him unique, but they are virtually unnoticeable by outsiders and I can honestly say that nothing in him is bad enough that needs explanation.

We are also quite pleased with his academic development. Though it took him a while to learn to read, currently at 10 years old and in the 4^th grade, he is reading at a 6^th grade level. He is doing 6^th grade math, has beautiful handwriting, great general knowledge and his ability to generalize information and to think conceptually is expanding at a steady rate. In fact, seeing how Ben is flourishing while following the NACD homeschool program, we had our other two children evaluated as well. Sara has been great at helping us organize our day efficiently, explaining to us why we do certain program pieces and teaching us how to implement them correctly. NACD has given us structure and support for daily life.

Four-and-one-half years after we began working with the NACD, we took Ben to the same pediatric neurologist to certify a form making us eligible for a tax deduction. Before meeting with Ben, the doctor inquired about him and what therapies we were implementing. When we told her about the NACD she couldn’t understand why or how a mom would do all the work at home and began telling us about a school for children with autism which would be the perfect place for our son. She went on and on for a while trying to convince us how good this school would be for Ben. Then she invited Ben in, had a lengthy conversation with him and asked him several conceptual questions, which he easily answered. The doctor was simply speechless! At the end of the session, she turned to us and said, “Forget everything I’ve said about the school. Keep doing what you are doing, because it obviously works.” We knew Ben was no longer locked up in his little world, but oh, how satisfying it was to receive the validation of the expert!

We are blessed by the work of NACD. It is an integral part of our lives, from helping us understand our children to giving us hope for a brighter, more normal future for our special son.

—Tammy, mother of Ben (as told to Iliana Clift)

Update 2017

Let’s jump ahead to today—Spring 2017! Ben has been on our program for several years since this article was originally written. He, along with his brother Levi and two sisters, Shiloh and Eden are all seasoned NACD kids. I have loved working with this family, whom I have never met in person, but thankfully technology allows us to meet using Facetime and Skype, where I have gotten to know this wonderful South African family even more. I have wanted to write an update on Ben and his family, because they are just doing so fantastic!

Ben, who is 13 1/2, is quite the scientist. This past month he was selected to spend five days on a cruise to the continental shelf to learn about birds. (He is an expert.) He is in the Junior Rangers program and is applying to take a Junior Biology course at the local aquarium (they live near Capetown, South Africa), where only a few children from the state are selected. This is for college credit. He reads biology textbooks for fun and is so present and driven to learn more and help animals. We are already looking into opportunities for him to help pursue his dreams. I am so proud of him. He is so fun to talk to and I learn so much from our conversations!

Since then, his younger brother Levi has also been on program for the last 4-5 years. He is homeschooled like his brother, but hasn’t had any developmental issues. Reading has been a struggle but he is getting much, much better. Through dedicated work on processing, on establishing neurological organization and providing him with the right input, he is in a much better place academically, reading and is quite the math expert. He can be emotional, but only because he wants to do things well. Speaking of doing things well, this kid started doing competitive stand-up paddleboarding and surfing a few years ago. He has done exceptionally well—so well that Under Armour has sponsored him as the company moves their product into South Africa. In addition, he has won many competitions, is the top stand-up paddleboarder for his age in the COUNTRY and is possibly Olympics bound. He is 11! How cool is that? As homeschoolers, they generally get to start their days surfing or “SUPing” before they read. I wish I could do that!

Then you have the two little girls. Shiloh, who is very bright, is just starting her homeschool journey, while Eden is already in the mix of processing, reading, flashcards, exercise, fun unit studies, chores and learning from her siblings. These two will bring their own unique gifts to the table as we learn more about their passions.

I feel so honored to know the Mayes family. I have much respect for all their hard work and dedication. They are a true example of how different our children are and how each one has their own unique gifts to bring to our world. We need scientists. We need athletes. We need thinkers. We need doers. We need talent. We need comedians. We need businessmen. We need entrepreneurs. We need doctors. We need engineers. We need cooks. We need landscape artists. Our children truly can be anything with the gifts they have. Much praise to parents out there like the Mayes family, who help their children reach those dreams and follow their passions.

—Sara Erling, NACD Developmentalist

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In order to determine appropriate treatment approaches for children with Down Syndrome (DS), one must first, look at “normal” development, and then explore how and why the DS population differs. When considering language acquisition we encounter historic problems that are not dissimilar from those of any of our special needs populations. The primary problem is the overwhelming tendency among educators, therapists, and caregivers to treat symptoms, when what is needed is a neurodevelopmental approach. A neurodevelomental approach involves identifying the developmental and neurological factors involved in each area where “symptoms” imply delayed or inappropriate function, and then determining how we can intervene and make a significant impact on the issues that created the problem in the first place.

Speech and Language

In this discussion we should first make a distinction for parents between speech and language. These terms are often used interchangeably, but they need to be separated if we are to understand the components involved in helping an individual to verbally articulate his or her thoughts explicitly with good enunciation. Important lines of distinction tend to get blurred in this discussion, because of issues pertaining to word articulation. To be “articulate” generally means to be able to speak effectively, which would place the word squarely on the language side of the ledger. But, we use the word “articulation” to refer to the ability to enunciate, to pronounce a sound, a phoneme, a word or a sentence clearly. Obviously this is an issue of speech, not language. We want our child to speak with good articulation and to be articulate; that is, we want both good speech and language. For our purposes let us define speech, as the neuro-motor function of pronouncing words clearly. Language we will define as the neurodevelopmental ability to use words, and to combine words so as to communicate. DS children historically have both speech and language problems.

We will first look at language—because you must first have words you want to say before we can be concerned about how well you pronounce them! One quick insight into what language is and where it comes from is to look at the difference in language function between a child who hears normally, a partially deaf child, and a totally deaf child. A normal child develops normal language, a child with some hearing may develop language, but if so it tends to be delayed and limited as a reflection of the degree of hearing loss, and the deaf child does not develop vocal language unless significantly alternative means are employed. From this one can infer an observation that has been demonstrated again and again—the basis of language function is auditory function. We must first have good hearing and processing of sound. Therefore, our first concern in the acquisition of language in DS children is auditory function and hearing.

Following our neurodevelopmental model, we will look at the “normal” development of auditory function and see what about DS is different and adversely effects that development. To understand the significance of hearing it is important to note that the auditory nerve, which is the 8th Cranial nerve, is the most primitive nerve in the body; the first nerve to develop in the fetus. This nerve and the stimulation of this nerve are very critical to the entire development of the child. The brain begins to learn how to process sounds in utero. The child is not born with the ability to process a full range of tones well, as a matter of fact, many people never learn to process a full range of tones well. The human ear can process tones throughout a huge range, from 20 Hz. to 20,000 Hz. The brain must learn how to process these tones, particularly the tones that are within the language range. One can develop an understanding of tonal processing by looking at the ability to hear and articulate a foreign language. The child generally learns how to process the tones in their native language during their first two years of life; some tones are unique to specific languages and absent in others. If the child has not learned to hear those tones the child will not be able to articulate those tones, and if enough of those tones are missing, the language, which they are processing, is extremely garbled. An example of a missing tone is the inability or difficulty of Japanese speakers to hear or pronounce “R” sounds. To speak a language you must be able to hear the specific tones in that language.

Auditory Tonal Processing

Do children with DS have a more difficult time learning to hear tones, and if so why? Many children with DS do have a difficult time learning to process tones. If the quality of the brain’s auditory input is disrupted or interfered with, auditory tonal processing development will be delayed or permanently impaired, unless there is specific and effective therapeutic intervention.

Generally, if language is delayed or if there is some question about a child’s hearing, hearing tests will be conducted. These tests are either subjective or objective. Subjective tests include the audiogram in which the child is asked to respond in some manner to tones. Objective tests include the auditory evoked response test, which measures the brain’s response to specific tones. These tests can generally be relied upon to identify significant global hearing loss, but they do not attempt to test more than a few sound frequencies. Many tonal processing deficits escape detection. For example, the inability of a native Japanese speaker to hear an “R” will not show up in such testing. In these tests, typically about 8 frequencies are tested across the 20,000 frequencies that we should be able to hear. This is a very partial measure of auditory tonal processing.

Auditory tonal processing problems are very common. Physical problems that adversely effect auditory tonal processing are not unusual; unfortunately, with our DS children, they are more the norm than the exception. Fluid or pressure in the middle ear is one of the most common problems affecting the development of auditory tonal processing. In our DS children this problem is almost universal. DS children tend to have narrow Eustachian tubes. DS children also tend to have low muscle tone. Coupled together, this makes it very difficult for the middle ear to drain. This problem is compounded by factors associated with a weak immune system, sinus congestion and mouth breathing. A cursory look into the child’s ears is not going to identify these problems. I strongly encourage the parents of every DS child under the age of five years to work closely with an ENT (a physician specializing in treating the Ears, Nose and Throat). Very regular visits to the ENT, including a tympanogram test for fluid or pressure problems in the middle ear, along with checks on the status of the tonsils, adenoids, and sinuses are essential for all DS children. Our DS children are predisposed to having problems which adversely affect the structure and thus the function of the ears, throat, sinuses, and oral cavity. These problems adversely affect the quality of auditory input that the brain receives and significantly impact the development of auditory tonal processing.

If our children are not developing normal auditory tonal processing they will be unable to hear tones well and are unable to process language well, thus creating a problem with the development of language. Parents of “normal” children often observe a problem in the child’s language development when their son or daughter has a middle ear fluid problem or an ear infection. When these problems occur it is commonplace to see regression in language function.

Remediation of tonal processing problems has been one of my emphases for over twenty years. When I first recognized the problem, I couldn’t find an effective treatment; I couldn’t even find anyone else who understood the problem! In the seventies I was doing some work in Spain and heard of the work of a French ENT, Dr. Alfred Tomatis. Dr. Tomatis trained professionals and treated patients using special equipment he had designed to improve hearing. I flew to Madrid and met with a physician trained by Tomatis and was impressed with the results they were achieving. Upon returning to the States I began referring some of my children to Paris to work directly with Dr. Tomatis.

In the past twenty years there have been many developments in the area of auditory training, all of which are based on this original work by Dr. Tomatis. NACD has utilized (and in most cases NACD staff has been directly trained in) every major auditory training approach, always in an attempt to find better technology and methodology. Even the best of these programs have entailed accepting some trade-offs in terms of their expense, convenience, and/or efficiency. The best and most recent development is a home-based treatment program developed by Applied Brain Technologies, which is based on input from NACD. This collaborative program is not only based on our experience but also that of leaders in Tomatis’s work and the field of psychoacoustics. Professional training in ABT’s “Listening Program” is presently being conducted in Europe and the United States. Early research results on this new program indicate that we now have a safe, powerful tool that is easy to implement in the home and which significantly improves auditory tonal processing.

Auditory Sequential Processing

The first step in providing a strong foundation for speech and language is to develop good auditory tonal processing. The second step in providing a strong foundation for speech and language is establishing adequate auditory sequential processing.

Auditory sequential processing is the ability to take in bits or pieces of auditory input and to process these pieces in a sequence. Initially, each individual phoneme is a bit, then we learn to recognize a group of phonemes together (a familiar word). Eventually a familiar couplet or phrase is also recognized and processed as a single bit of information. As the child develops the ability to sequence more and more bits, her language ability grows. This language progression grows from an initial sound, to an approximation, to a word, to a couplet, to a three-word phrase, to a four-word phrase, to a sentence and then strings of sentences. The function that makes this possible is auditory sequential processing.

Normal auditory sequential development occurs at the rate of one bit per year of development. Thus a one-year-old child can process one piece, a two-year-old two pieces and so on. Normal auditory sequential processing for a child of seven years or older is considered to be seven plus or minus two digits. Our perception is that anyone over the age of seven with a digit span of less than seven has a deficiency in auditory sequential processing. Auditory sequential processing determines the ability to process language, to think conceptually, and to express oneself in words.

Quality Auditory Input

The quality and quantity of specific auditory input, which the child receives, determines the development of auditory sequential processing. What constitutes quality auditory input? Quality auditory input is sound in the form of clear tones and words that are presently in an acoustically friendly environment and which match or slightly exceed the auditory processing skills of the listener.

What this means is that we need the child to be in an environment as free of extraneous auditory input as possible, void of noise if you will, and which is organized with an understanding of the processing skills of the listener. Extraneous auditory input noise is any sound that isn’t needed. I once heard a successful old farmer define a weed as “any plant growing in the wrong place.” For our purposes, noise is any sound that appears in the wrong place and time, usually because it is extraneous to the function being performed. Auditory input that fits the listener is input that matches or slightly exceeds the processing of the listener. If we are cognizant of the auditory sequential processing skills of the child, we can speak to the child in pieces that the child can process and stretch them one step further so that we are both communicating and helping to move the sequential processing one step further. The optimal environment for this quality auditory input is a quiet room with one child and one adult.

The further we get from this model the further we get from providing the child with optimal auditory input. The more extraneous sound, the more noise, the more voices, the poorer the quality of input. The child’s problems with auditory tonal processing further reduce the quality of input. If we address the child without awareness of the child’s sequential processing capacities, the input will be of even poorer quality. Anything that diminishes the quality, quantity, or intensity of appropriate auditory input that the child receives needs to be perceived as diminishing the opportunities for the development of language.

Having evaluated accelerated and remediated auditory sequential processing in some 20,000 children and adults, we understand the significance of auditory sequential processing, not just in the development of language, but in the development of cognitive function and learning.

There is a direct correlation between language development, cognitive development, academic development and auditory sequential processing.

Language development is based upon five major factors; the physical health of the child, the opportunity to develop good auditory tonal processing, the opportunity to develop good auditory sequential processing, the opportunity to receive as much quality auditory input as possible, and the child’s need to speak to be understood.

The Value of Frustration and the Child’s Need To Speak

Before we move onto problems associated with speech, I would be remiss if I did not offer some discussion as to the child’s need to speak. When we evaluate a child’s lack of language function, we evaluate the health, the tonal processing, the sequential processing, the environmental opportunities for quality input and the child’s need to speak. This last factor can have a very major impact on the development of vocal language. Working with a full range of children has many advantages, one of which is it makes it possible to identify problems that on the surface have different origins, but which on closer examination are in fact the same. In our work with accelerating development in “normal” children, it is not unusual to find a situation where we have a very motivated attentive mom who is very attentive to her only child. In many of these situations, the child’s language skills are superior as a reflection of the excellent opportunities the child has received, but there are some exceptions. The exceptions are children whose moms know what they want before the children do or whose grunts are interpreted with almost psychic clarity. These children have no need to speak, no need to work at learning the “foreign language” that their mothers use. As with most of us they take the easy road. In our DS population we often have exactly the same experience we have with our “normal” children, and sometimes it has a twist. The twist is the use of an alternative means of communication.

Providing most children with an alternative means of communication can eliminate the need to speak, or the frustration that would be experienced at being unable to communicate. This will generally delay the development of language.

Distinguishing the Role of Neuro-Motor Factors from Gaps in Tonal and Sequential Processing Development

Neuro-motor problems involving speech are unfortunately very common among DS children. The origins of these problems are the same as those in the development of auditory tonal processing and sometimes are the reflection of auditory tonal processing or sequential processing problems. Health issues that effect the development of the sinuses, mouth, and tongue are the culprits in the development of the structures required for good articulation. The typical scenario involves chronic problems that can originate with the ears, throat, tonsils, adenoids, lungs or sinuses. Low tone coupled with chronic problems that lead to mouth breathing, poor chewing, poor tongue control and tongue thickening, inadequate sinus development, high palates, enlarged tonsils and poor lung capacity all create structural problems that impair speech. These problems can be lumped together as oral motor problems. In order to develop good speech, general health and oral motor issues must be addressed. There are many oral motor techniques and methodologies which can be employed, and which should be included in the therapy program for these children.

Some speech problems are reflections of auditory tonal issues rather than (or in addition to) neuro-motor problems. If the child is unable to hear a tone properly he will be unable to reproduce that tone properly. One of the more common signs of auditory tonal processing problems that should be noted are problems involving hypersensitivity or hyper-acute hearing. These problems are universally a reflection of an auditory tonal processing problem and one can infer that in addition to the obvious hyper frequencies, there are also other tones which are being underrepresented (or hypo). No amount of oral motor work is going to correct a speech problem that originates with an auditory tonal processing problem.

Auditory sequential processing also has a significant effect on speech. Children will generally try to use more pieces that they can hold onto and will produce what I call tonal approximations of the language. You can liken this to humming the tune to a song for which you have forgotten the words. If a child, for example, has the ability to auditorially sequence two pieces, the child may come out with what is almost a four or five word phrase which consists of many of the vowel sounds and very few if any consonants. If you already know what the child is talking about you may be able to figure out what they are saying. We refer to this process as “chunking,” which means that rather than isolating the pieces and articulating each phoneme, the child is putting the whole phrase together as one chunk of information. If a child is able to reproduce individual sounds and articulate one or two syllable words well, but the articulation breaks down if the child tries to say a longer phrase or sentence, the problem is the auditory sequential processing.

Speech problems may be a reflection of neuro-motor issues, auditory tonal processing or auditory sequential processing problems. Comprehensive intervention must address the specific problems that adversely affect the specific child.

Why Do I Rarely Recommend Signing or Total Communication Approaches

A significant controversy exists today as to whether children with DS should be taught to sign. I have watched the development of this trend with anxiety. Resorting to sign language is a reflection of symptomatic intervention. This trend is a reflection of understandable frustration and a lack of understanding of the components of speech and language and how to successfully remediate such language acquisition problems. Signing and total communication approaches are rarely the best option for DS individuals.

Most children with DS who have speech and language problems are not receiving the necessary healthcare intervention they need to facilitate good oral structure and function. Most are not receiving good oral motor intervention, most are not having their auditory tonal or sequential processing issues addressed; therefore, most are in trouble.

Teaching sign language is a very understandable impulse. If I were responsible for helping a DS child learn to communicate and I did not understand the developmental components involved in speech and language or the intervention that is necessary for language to develop, I might resort to signing as well. It seems harmless enough. It can help relieve the child’s frustration at not being able to communicate. It is done with the best of intentions. At least it should not hurt anyone. I understand the logic. Many children never even obtain communication at all. Signing is better than nothing. After all, once there is communication, we do gain new levels of access to the uniqueness and beauty of the child.

But my experience has been that it almost universally does hurt. Part of the problem revolves around the perception of potential. Those who have seen very few DS children learn to speak and communicate well are often happy to accept less and are pleased with the results that are achieved. My goal is always to achieve normal function. I often object to traditional physical therapy approaches because they are aimed at achieving any kind of “walking”, rather than normal walking. It is ok to forget about developing normal muscle tone, normal muscle balance, or taking the child through the normal developmental steps if the only goal is “walking”. But if you want the child to walk “normally”, you had better put all of the pieces together properly. The same is true of speech and language. When you take developmental short-cuts, you are cutting your developmental throat. Your short-term solutions can destroy your long-term goals.

Signing or Whole Word approaches adversely affect normal development. The primary input that drives the development of auditory tonal and sequential development is the processing of language. Listening to and trying to process speech is the primary input that drives a child’s development of auditory tonal and sequential processing. If we establish a means of primarily visual communication, the child will “tune out” spoken language, and lose this very critical input. It is argued that with a Total Communication approach the child is hearing the word as well as seeing the sign. The reality is that all young children are primarily visual learners, not just DS children, and that everyone concentrates on whatever works best. When you simultaneously sign and speak, the visual input far outweighs the auditory. This dramatically reduces the intensity of the auditory input, thus decreasing its effect upon the brain. One future complication involves the development of the articulation. A child who is intently trying to understand what you are saying will closely watch your mouth and will often mimic your actual tongue and lip movements. If a child is watching your hands, they are not watching your mouth. And if they are communicating via signing, they are not so frustrated anymore. But frustration is what drives development.

All theory aside, I have worked with many thousands of DS children over many years. The families that I work with come to me having utilized all manners of treatments. I have no vested interest in using or not using signs or any other technique for that matter. We use and recommend thousands of techniques. My interest is only in finding out what works and preferably what works best.

My experience has been that those children who use signs, particularly those who go beyond a very few rudimentary ones, are significantly more delayed in their language function than children with similar basic function who do not use signs. I have also seen that some children’s auditory tonal processing, auditory sequential processing, speech and language development are irretrievably harmed. But, the primary concern and dialogue should not be directed toward signs or no signs, but toward putting the necessary pieces together so as to accelerate the language development in our DS children and avoid the need for such alternative means of communication.

The rate at which a specific child’s speech and language develop is determined by a combination of factors. Slow or delayed development does not reflect low potential. However, we must address the specific neuro-motor and neurodevelopmental needs of the child. Otherwise the child will probably not get the opportunity to develop fully and realize his or her potential.

We have learned a tremendous amount in the last few years about the development of speech and language. In just the past year, some very significant tools have been created which will have a dramatic impact on our children. Do not compromise. Work hard to provide the children with every possible advantage. “Normal” is not an unrealistic goal.

Reprinted from the Journal of The NACD Foundation (formerly The National Academy for Child Development)

Reprinted by permission of The NACD Foundation, Volume 12 No. 1, 1999 ©NACD

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