So we felt very alone as we tried to figure out what was going on. For the first year of Jake’s life we frequently felt alarmed as we noticed non-typical behaviors and responses, but they were subtle, and as he was such a smiley, happy and alert child, we were told not to worry. 

Then we noticed that our child wasn’t learning properly. He was late with walking and talking. He never crawled. We had done the alternative method of potty training from birth so he skipped crawling and instead bounced around on his bottom. I noticed that he never signed back to us, communication being a part of the early potty training method. He was late to walk and talk and even then, he would come up with a word, say it exclusively and constantly for a few weeks and then forget it. When we taught him things like how to clap, we had to practice it for a while every day before he would try to imitate it, then if we didn’t practice it daily, he would forget that too. His adorable little body seemed oddly stiff, he didn’t cuddle in like most babies did and while he would sit there and smile, he seemed lost in his own dream world and did not respond to much around him. 

After rounds of specialists, three days after the birth of our second child, when Jake was 19 months old, we were given the diagnosis of Potocki-Lupski Syndrome, a genetic disorder, a replication of a tricky part of chromosome 17. The pediatrician gave us some pages photocopied from a sterile medical textbook listing the myriad of things that our child was never supposed to do and all the difficulties that he would face throughout life. We were floored and devastated. I leapt into research but everything I found on his diagnosis upset me more and I spent the first few months of our second child’s life crying. I remember asking another pediatrician about what Jake could be expected to achieve in his life and he told me proudly about a similar child who had made his first independent phone call with some limited language by the age of 18. While I understand now how incredible these milestones are for families of children with special needs, however as a new parent at the time, I did not find that information comforting. I asked another doctor what “developmentally delayed” meant, hoping that it meant he would just catch up later. She gently told me that it was a polite term for “mentally retarded”. Indeed as my darling baby could not even master or remember “clap”, how on earth was he going to build higher order skills to handle life? 

Fortunately we have always been alternative minded and I managed to shake myself away from depressing mainstream research. I turned to Down’s Syndrome as a more commonly known genetic disorder, figuring that some clever parent there had found some breakthroughs for their child. And indeed I was right! After scouring FB pages and parent groups, I found in the Down’s Syndrome world that amazing things were happening for children who had either one or both of two things: biomedical intervention and neurodevelopmental therapy. So we decided to launch into both. It took a few years to get going with the biomedical, but with NACD we were able to start immediately. Out of all the neurodevelopmental organizations I liked NACD the most as they had a program that cut to the chase with the most time effective and modern methods, and they also offered ongoing parent support and coaching which as a floundering and disorganized parent, I knew I would need. 

At the time we stared, I remember Jake had a lot of unusual behaviors, every time he saw the ocean he would freeze and stare it and refuse to move on. As we lived in a small island community glimpses of the ocean were frequent. He’d open and close cupboard doors, arrange things in straight lines and never wanted to interact with other kids. He had very limited speech, and all sorts of motor skills problems. He could not even pedal a tricycle. 

I can’t remember much about that time now quite honestly. I was frequently sick and exhausted from having 2 children close together and with an undiagnosed autoimmune condition in the background. My husband and I did program as best as we could though and I remember starting to feel hope. Jake’s mind started to unlock, he started to be able to learn and we discovered he had a few superpowers, an amazing ability understand and order numbers, remember items on sight and he could even say his alphabet backwards. For a child diagnosed with a severe short term memory problem, this felt like sunshine from the heavens. NACD kept guiding us with program and as a family we were feeling more and more normal every day. We started a biomedical approach with specially developed Nutrivene vitamin supplements around the age of 4 and then everything really came together, Jake seemed to “wake up” to a new level of awareness, his speech and motor skills took off and we were so happy. Our second child, typically developing was put on program too and he was well ahead with all his milestones. 

While I don’t remember too many details of that time now, suffice to say we went from despair, hopelessness and rounds of specialists who used lots of big words but actually did nothing to actually help, to feeling like a happy, hopeful and normal family. We no longer felt like a “special needs” family. Program was very hard in those first years, but we were getting results and our lives back! It was wonderful to finally feel like a “normal” family.

We moved overseas then and stopped our NACD program for many years, happy to just live a normal life. Jake still had challenges, but he doing so much better. He started school with an aide but his superpowers really helped him through, from a child who couldn’t remember how to clap he now had the most astonishing memory! He had a phenomenal ability with geography, and started winning the school’s geography contests from first grade. He beat all the high school kids and even the school superintendent when he stepped in as a special guest. He knew every country, capital, flag, location, shape, and once he mastered that he turned to history and somehow developed an incredible grasp of historical details on top of that too! 

We started formal homeschooling formally around third grade when the covid lockdowns started and muddled through that for a few years. When Jake hit puberty it became apparent to his father and I that he needed further help. He was still having a lot of trouble with reading, he’d been recently diagnosed with an eye tracking problem but the mainstream offered us nothing except devices to learn to live with it. We had tried everything but gotten nowhere. He still had struggles with social skills and motor skills, and while his speech was reasonably good, it was still hard for him. 

As the worry started rising again, we turned to the place where we’d found hope before, the NACD! And in just 7 months back the results have already been incredible! Jake started in November at an auditory processing of 4-5 and in 7 months is has now just touched on a 7! His maturity and awareness has developed in leaps and bounds with it. His eye tracking is improving and reading is getting easier for him every day. He can swim now, and his social skills are improving. He has developed a love for math as the NACD teaches it, and will joyfully tackle page after page of his math text book just for fun. Before NACD he struggled with basic concepts. He is taking off and once again we couldn’t be happier. My only regret is we didn’t get back to it sooner, but fortunately NACD is helping us to catch up and overcome for that lapse quickly! 

I should mention my second son, DJ too. While typically developing he did program for a year or two when he was barely a toddler, and he has continued to go from strength to strength. When he started school the testing they gave him said that he was in the top 1% and was considered gifted and talented. When he was 9, he started getting impatient with all the attention Jake got for his his impressive history and geography knowledge and told me he wanted a superpower too. After watching Beethoven’s Moonlight Sonata on you tube he decided that it was a pretty nice song, and he wanted to play it. He slowed down the finger movements from a You Tube video and copied them. Within just a few months he was playing piano surprisingly fluently. A music teacher at a summer camp a few months after he started hailed me down one day with wide eyes asking me if I knew that DJ was unusually talented. He is now 12 and works in our community playing piano at events. He is well paid and makes great tips too! 

Everything that DJ does he does so easily and at a high standard. Around the age of 10 he the took up the Rubik’s cube, mastered it in record time and at high speed. It didn’t take him long to get to world competition speeds on nearly of the all the cubes, but then he lost interest and moved on. He is very entrepreneurial, and through primary school would frequently came up with new games or projects which fascinated and created a following amongst other kids. 

Previously homeschooling DJ in math was not working and he had seemed to be going backwards so I put him back in school for math. He was doing reasonably well, but after starting NACD for just a few months his teacher contacted me in amazement asking what we were doing as in the MAPS testing DJ had suddenly jumped from a 6th grade level to an 11th grade level almost overnight! Here’s the message I got from his teacher: “Hey Melissa, just wanted to share some great growth from DJ on our winter math Maps test! He improved his score by +18 points from his fall score! (+3-5 is a significant amount for a year so this is pretty impressive!). Went from a 6th grade average to testing at the 11th grade average! Very proud of him and the hard work he has put in.” A jump of 18 points in a season when 3-5 is a significant amount for a year? Wow. The only thing we had done differently was to start NACD again and get to work on his processing! 

Would DJ be doing so well without the early intervention of NACD in making sure his development was all so perfectly addressed? I guess we will never know but as a mom I am sure NACD had a lot to do with it! 

NACD are truly miracle makers. Sara, our evaluator has laser vision and doesn’t miss a thing. Our program is perfectly tailored to both children, exactly what they need. The parental support and coaching is beyond invaluable. Any behavioral, teen attitude issue is quickly nipped in the bud, and we have a smooth running household now where my boys help out, are well behaved, and are developing into responsible, helpful young adults with initiative. Amy is a coaching wonder woman, and has helped me tremendously to get my act together. NACD offers a whole family, whole life perspective that gives you the perfectly tailored program to your child and life, with the support you need to put it into action, while missing nothing. Chores, responsibilities, and the child’s personal growth and happiness are all a part of it. And guess what? The kids love it. They think homeschooling is fun. Working on processing is central, and we celebrate every step up. Processing parties are the new fun thing in our family! 

Our life can truly be measured in BEFORE and AFTER NACD. All the behind the scenes staff are incredible too, and I can honestly say that I feel like they are family, a group who has always been there for us, giving us the answers and support we need to live our best lives. We are living our dream in remote Alaska, a wild and different life, unconstrained from needing to be in city centers, near specialists and therapists. Life is happy, hopeful and wonderful and I will be forever grateful. 

The post Martin Family Testimonial appeared first on NACD International | The National Association for Child Development.

Quite a few of you know my story and journey with NACD, but for those of you who do not here it is in brief: We started our journey with NACD in December 2008. At the time my son Grant, who was five years old, was completely non-verbal, developmentally delayed, a flight risk, very stimmy, and had behaviors out of control. My husband and I were desperate for change and NACD gave us hope that one day our son might be able to first and foremost communicate with us and secondly live a happy and fulfilling life. I am very pleased to say that through our journey with NACD these hopes have become reality. He is fully conversational, a delightful young man, and living his best life. We continue to push forward and raise the bar on the expectations of him reaching his full potential.

In December of 2021 my dream job came to fruition, working for NACD as a coach, supporting families just like mine. As coach and now well into evaluator training, I have gained a different perspective through working with both evaluators and families. This has caused me to reflect on my personal journey with NACD and through reflection there are some things I wish I had understood more fully earlier on.

I wish I understood then just how important processing activities are as the critical foundation to global development. The background information I brought with me had me convinced I needed to prioritize other activities I felt were more important, like reading and math. These things are of absolute great value and importance, but the reality is the higher the processing is in a child, the easier these subjects will be to learn, and not only to learn, but to retain. Push to build the processing and the academics will fall into place much more easily.

I wish I realized that each activity on my child’s program is put on program with a specific intent and purpose. There are no “fluff” activities on program. Each activity is an important piece in building your child’s brain. Your evaluator has reason and intent behind each activity as to why it plays an important role. If you are unsure what an activity is accomplishing or why it is on your child’s program, ask us! The more you understand your program, the more successful you will be at implementation.

I wish I embraced the concept of pushing chores, responsibility, and self-help skills earlier on. I had my children learn chores, but I did not quite fully understand the bigger picture of what is accomplished through having a mindset of increasing the list of things my children can do. When it comes to chores it isn’t so much about what kids can do but more about what is happening through the act of doing chores. Chores build confidence and independence in kids. The more confident and independent kids are, the more intrinsic motivation they have to not only take on learning new things but are not intimidated doing hard things. Confident children have a “can do” mindset and this mindset overflows into academics as well. When this happens, they aren’t intimidated by working a tough math problem or learning something new, but instead they readily take on the challenge and with joy! There is another big piece of development that occurs through building the list of things a child can do, and this is maturity. Maturity comes with doing things for oneself and through doing things for others. We are raising highly capable adults. Highly capable adults are confident, independent, and mature. Keep raising the bar on the things your child can do!

Lastly, what I would tell my younger self when first starting our journey with NACD: Know your child’s program thoroughly. Watch the video tutorials and read the handouts from time to time, not just when you get a new program. You will learn something new every time you do. Ask questions if you are unsure about any activities or if something just doesn’t make sense to you. Take time to educate yourself by reading Bob’s articles in the newsletters and watching his YouTube videos. There is so much to be learned and the more you know, the better you will be at implementing program. Your time and efforts working with your child will be more efficient and your greatest work will be right before you, your amazing and unique child well on his way to reaching his full potential!

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Most of us have no idea what creatures of habit and patterns we are, nor how stuck we can be in these behavior patterns. I have three dogs that keep reminding me of what a creature of habit I am. If I’m watching TV in the evening and pick up the TV remote, my dogs notice; and if I turn off the TV, they all jump up ready to go. Which way they go is determined by the direction of my first step when I stand up. In the morning if I pick up my cup from the coffee machine and if I turn left, my dogs run down to my office. If I turn right, they go about their business because there are too many options as to what I might do. You probably put the same foot into your pant leg first most every day. The point is that we humans create hundreds of behavior patterns, most of which we are oblivious to.

When dealing with children, particularly children with developmental issues, the connection between the child and the parents and caregivers is amazing. This connection leads to each learning each other’s patterns. Patterns can become ruts, ruts that both parent and child can get stuck in.

One very common pattern or rut that creates problems involves what children will eat. In a very significant percentage of children who come to us, ranging from severely involved children to those who are gifted, a common problem is picky eaters. Back in the early ‘70s when we created a program specifically for children with autism, I worked with a teenage girl who had eaten no food other than apples for virtually her entire life. To compound the mystery of this child, she also had pica—she would put most anything in her mouth and eat it. This included everything from dirt to bugs and her dog’s feces from the yard, but not food. The issue with her eating a greater variety of foods was obviously not an issue with taste or smell, although this can be an issue for many children, particularly those on the spectrum. It was simply a matter of an established pattern, a habit. It should be noted that food cravings that come from eating a lot of some specific foods can also be a contributing issue. Kids are not simple.

In a previous article (Independence and the Developmentally Challenged Child) I discussed how important and vital independence is for the overall development of the child or young adult. The child’s and the parent’s patterns and habits often have a very negative impact on the development of independence.

An example of a common pattern that slows down the development of independence in many children is helping them dress themselves. Most parents who assist their child in dressing and undressing assist in virtually the exact same way every time, and the child participates, or does not participate, in exactly the same way. As an example: Mom approaches Johnny with a T-shirt. Johnny sees it and waits for Mom to put it over his head, at which point he lifts his arms and she helps put his arms in the sleeves. Then she pulls the shirt down. Every day they follow the same pattern. If Mom doesn’t do something to change her pattern, the odds are great that Johnny doesn’t either; and Johnny’s development of independence in dressing himself goes nowhere. Parents need to become acutely aware of the hundreds of such patterns, habits that have been created by them and their children, and consciously work to break them.

It’s helpful when trying to grasp the significance of patterns to see how differently children perform with different people and in different places. Children who work with their parents, caregivers, therapists, and teachers are often going to react and perform differently with each person, or in each place, because patterns and habits are created together and are often person and place specific. Each adult establishes a new pattern, and to some extent the physical space helps establish a new mental picture and a new pattern as well. Most children on the spectrum are strong visualizers, creating mental pictures and videos associated with many aspects of their lives. For these visualizers anything that changes their picture (or habit) can lead to them becoming upset, with the net result being that family members and caregivers avoid upsetting the apple cart and work hard to maintain and reinforce the habits.

One of the most devastating and pervasive problems associated with patterns negatively impacting many of our children with developmental issues is prompt dependency. Prompt dependence is actually taught through creating a patten by which the child is prompted, generally verbally through virtually every step of what they are being instructed to do. Some children, after years of such instruction, develop such a strong pattern that they will do almost nothing without a prompt, requiring someone to guide them through most everything they do, creating greater dependency and stifling independence.

Referring back to the picky eater problem, parents often discover that their child will eat foods at the grandparent’s house that they won’t eat at home, or in a restaurant, or even outside. This is because a new place helps change the pattern.

The teenage girl with autism I met had her eating problem largely resolved within the week she and her family spent with us. Guess what we did to fix it? Almost nothing. The child had spent her whole life at home, eating by herself in the same kitchen at the same table and given the same food—apples—because her family been convinced that she wouldn’t eat anything else, and had established a very strong behavior pattern. When the family flew across the county, stayed in a hotel and at our offices, and ate at restaurants together, they broke the pattern. My little suggestion was to not have any apples nor bring apples to the restaurant and to simply order her the same food the parents were eating and tell her they didn’t have apples. She ate the food and within the week established a new behavior pattern, which was to eat what the family ate.

Patterns and habits affect all of our lives to amazing degrees. Having healthy diets for most people means establishing a new behavior pattern or habit. Exercising regularly for most people requires establishing a new behavior pattern or habit. Many people realize how difficult it can be to break an old pattern and create a new one and realize it doesn’t just happen. You have to very consciously work to create that new behavior pattern; and the longer a pattern exists, the tougher it is to change it, whether it is a good or a bad habit.

Typically developing children are neurologically changing rapidly, and that neurological change pushes them to do new things; and in the process it tends to break many previously established patterns of behavior. Typical children and their parents can certainly fall victim to habits. But when you slow down the developmental process, life tends to become just a series of pattens that essentially rule the child and the family’s life and can significantly and often dramatically inhibit change, development, and expectations. These patterns can affect all areas of development and function. An example is children learning patterns of communication. If whining works to get attention, and Mom interprets that as the child wanting something and becomes trained to start offering the child options until the whining stops, then the odds are good that the child will maintain that pattern of communication even though they neurologically are ready to start verbally communicating. In a similar vein there are children who develop a functional vocabulary of only a few words, who may go years without expanding that vocabulary. It becomes their pattern, and if the expectation is that it’s all he or she can do, then it becomes the perception of what can be, and it is accepted. A child who has a vocabulary of three words is demonstrating that they have the cognitive ability and the oral motor ability to think in words and produce words, why not ten words or twenty words or a thousand words?

If a child lacks mobility, the ability to move either through crawling, creeping, or walking to get to something, and learns to simply lay on the floor and space out, cry for attention, or whine until someone brings something to them, then often these become patterns and the child has no perception that they could move to go somewhere or get something. These children may have the cognitive and physical pieces that would permit them to move, but they are stuck in a pattern.

Looking at pieces of the child in isolation makes it very difficult at best to determine what is a reflection of the child being stuck in a pattern vs. what can, could, and should be. The perception of what can be is then easily limited to what has been, and doors are closed not based on the innate potential of the child, but rather on what patterns have been and are in place.

If, however, we view the “whole child,” the gestalt of the child, we can then see what could be and what pieces need to be put together to break the habits or patterns and move forward.

For example, one vital piece of the “whole child” is cognitive function. If we have understanding, auditory sequential processing, that says the child mentally has the ability to use language functionally and put two or three words together, as well as adequate oral motor skills for speech, but they only use a few words, then we know we have a child who today could be speaking much more, if not for being stuck in a pattern. If, however, we have the cognition, but not the needed oral motor function, then we know we need to work on the oral motor function hard, as well as working behaviorally to create the internal need to communicate. Conversely, if the child has sufficient oral motor function, but not the cognitive function, then the primary focus becomes the cognition.

Looking at a child as their isolated pieces and not understanding their patterns and habits can produce misdirected efforts and priorities, and more often than not turn the focus toward alternatives that lead to poor, low, or limited expectations that can negatively impact the child’s ultimate potential.

Not understanding the “whole child” or the impact of patterns can lead to pursuit of poor alternatives. For the child with limited language, the alternative may be an augmentative communication device that for the vast majority of children fails. If full mobility is deemed to be improbable, then putting the necessary developmental pieces together gets scrapped, and the therapy gets directed toward a child who will spend the rest of their life in a wheelchair. Or a child with unresolved behavior issues ends up being medicated, rather than having his pieces put together and patterns broken.

Habits and patterns impact all of our lives. For our children with developmental problems, these habits and patterns, both theirs and ours, can have devastating consequences. Every child needs to be viewed through the lens of the “whole child” and seen as a creature of habit if we are going to begin to provide them with a real opportunity to realize their innate potential.

Lack of function needs not and should not be viewed as a prognosis or predictor of potential.

Reprinted by permission of The NACD Foundation, Volume 34 No.5, 2021 ©NACD

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What is the difference between a parent or a caregiver trying to push a child to take a developmental step and a child being driven to take that step? For all children it is very significant; but for the developmentally challenged child it can literally be the difference between success and failure.

If you observe the changes that take place in a child as they gain more and more functional mobility, be it a child who is developing typically or a child with challenges, the associated global changes are hard to miss. The child being able to initially move and crawl on their bellies and get to something is a major step in independence. When they can move faster and better and can creep on their hands and knees, they take another leap, as they do when they start walking. At each of these stages, the child’s level of awareness and the degree to which they are present and are taking in more information takes a major leap forward. The added input their brains receive, along with the associated neurodevelopment, results in improved processing, cognition, language, and more. However, another often missed but related and important piece to this process is the effect of independence.

I have observed that independence results in an increase in initiation.

One of the toughest challenges for the parent of a child with developmental issues is trying to get them to do something that requires work, time, and perseverance when the child couldn’t care less and lacks the perception that they are actually participants and can initiate and do something. Some of these initial steps can be maddening for parents. It’s not surprising that many parents of developmentally challenged children often feel like Sisyphus, from Greek mythology, who was forced to keep pushing a boulder up a mountain only to have it keep rolling back down. These first steps are so difficult because a child who lacks independence, who has limited ability to interact or play with a toy, feed themselves, speak or initiate much beyond getting a reaction from a parent with a smile or a scream, does not perceive that they can initiate or produce change, or simply, just do something new or different. At every stage of a child’s development, the more independent and empowered they are, the more they strive to move forward on their own, as do most typical children to varying degrees.

It amazing how apparently minor acts of independence can produce global change. As an example, it has been interesting and enlightening to observe the impact of self-feeding on independence and initiation. Many parents of children with developmental issues see feeding as a process by which you get food from a bowl into a child’s stomach as quickly and as efficiently as possible. This often means feeding the child pureed foods that do not require chewing and using a rather large spoon so the food can get shoveled in as quickly as possible, leaving time for what are perceived to be important things. Comparing children who are very developmentally similar who are encouraged and taught to eat independently as soon as possible to those who are fed is often dramatic relative to their overall development going forward. If you think about independence, being able to feed oneself is as foundational as it gets.

One of the things about working with a lot of whole children is that it permits you to see correlations and associations. I understand parents, and I get it that some are not making the connection and giving their children the opportunity to learn to finger feed because they don’t want to deal with their child painting themselves and the kitchen while learning how to do it, or to deal with their discovery that a spoon can function as a catapult, permitting them to launch food even farther*. But where many parents see a disaster, I see initiation. The more a child does independently, the more they become aware of themselves, their surroundings, and their ability to impact their lives, to change things and do new things, to move forward, to initiate.

I have a little grandson who I have loved observing as he moved from crawling, to creeping, to walking, and watching his world change. Crawling permitted him go, to explore, no longer dependent on someone bringing the world to him. Faster, more efficient mobility, creeping, opened up more territory and the ability to start getting up into a kneel to reach and interact with things at a higher level; then pulling to stand permitted access to more of his world, which quickly transformed into walking and reaching higher places and getting around faster and freeing his hands to move and carry things. Each new step in his independence opened up more of the world and taught him that he could change it, which taught him he could initiate doing more and more himself. The more empowered he was, the faster and faster he developed. At sixteen months of age, I watch in amazement as he moves around a room, exploring and discovering that “This does that and that” and “Oh, I can make it do that too.” “I can initiate,” “I can change and impact my world.” He just sees challenges, not limitations. Independence produces initiation, and initiation produces more and faster development.

Coaches often talk about trying to instill an “I can do” attitude. The truth is, the more you can do, the more you instinctively know and believe you can do.

For a child with developmental issues, this correlation between independence, initiation, and global advancement is ongoing and as significant for the teen or young adult as it was for the infant.

Independence and initiation develop through the basics, such as moving, feeding oneself, and independence in dressing and toileting, into the ability to get themselves food and drink, to the understanding that language is a means to get what you want and need, as well as communicate feelings and thoughts, which have the power to influence and produce change. But it certainly doesn’t stop there. Some of the first questions I ask parents about their children relate to independence in self-help skills and chores. The independence that comes from doing chores without prompts**, from owning chores, doing your job without someone standing over you and prompting you, translates into self-confidence and initiation. Being independent and responsible for chores generalizes into all aspects of the child’s development, education, and maturity.

Parents, don’t put independence at the bottom of your list, put it at the top.

Independence fosters initiative, and initiative is a key to development.

* There is also a huge range of other benefits from a child learning to feed themselves, ranging from foundational oral motor development needed for speech, to focus and visual convergence, to digestion, just to name a few.

** One of the more difficult things to overcome in a child with developmental issues is prompt dependency. Being taught that someone needs to prompt you to do every step teaches dependency, not independence, and kills initiation.

Reprinted by permission of The NACD Foundation, Volume 34 No.2, 2021 ©NACD

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These COVID-19 Coronavirus times have certainly turned many of our worlds upside down. We now virtually have a world full of homeschoolers; more parents are at home with their children than at any time in the history of the world. Exceptional times and exceptional circumstances can also result in exceptional opportunities. Many of us are rediscovering and redefining basic things like family, work, school, and our relationship to institutions and society. I would like to talk with you about redefining potential and intellect and how while you are all at home, you have the potential to change the lives of every member of the family.

I would like to share a personal story. I grew up in a family of pioneers in human development. My father, a physician, and my uncle, a physical therapist in the ‘50s, worked with brain injured children and discovered that with the proper stimulation, healthy parts of the brain could learn to carry out the functions of damaged areas of the brain. This was ground breaking work that was originally seen as heretical, but is now after decades universally accepted. Changing perceptions is not an easy task, as I can certainly attest to after fifty years of trying to do it.

When I started studying psychology in the sixties, I had a tremendous advantage over others studying and working in the field. I came to understand that all development was possible through this amazing mechanism called neuroplasticity. If you understood neuroplasticity, development was no longer such a great mystery. The brain changed and developed as a reflection of specific stimulation, not because it just got older. Armed with this understanding, I looked at the brain as dynamic, changing, and most significantly, as changeable.

One area of early interest for me was learning and memory. At that time it was just beginning to be understood that there were various components of memory. Memory was being broken down into short-term memory, working memory, and long-term memory. The focus was on testing it and looking for correlations between these pieces and how people learned and functioned. At that time and for decades, the worlds of psychology and education did not have a perception that you could actually help develop or change memory; and even today, they are not really working to do that. My perception, based on an understanding of neuroplasticity, was that these components of memory didn’t just pop up as adult abilities, but they developed; and what developed changed; and what changed was changeable. I set out to understand all of these pieces and to find ways to change, develop, and accelerate that development.

Decades later I am proud to say that we have developed a great understanding of all of these foundational pieces that we now lump together and refer to as “processing.” Armed with this knowledge and the tools we have developed, we have helped change many thousands of lives. Improving these pieces of auditory and visual short-term memory and working memory is quite simply making people smarter. From our first software that ran on a Commodore Pet computer with a cassette drive in the early eighties, to the Brain Builder software in the nineties, to the present online Simply Smarter program and many dozens of one-to-one activities, we are working to change lives. From brain damaged individuals to those on the autism spectrum, to those with learning and attention issues, to typical children and adults, we can build all of these foundational pieces of memory that literally have the potential to make everyone smarter.

At NACD we work with “whole children,” designing home based comprehensive programs that address everything from a child’s sleep and behavior to how they walk and do algebra, including innovative comprehensive homeschool/home-based educational programs. But there is something that in one way or another is on every child’s program, and that is processing activities.

We are fortunate that we can work via Skype with any family in the world who has Internet access and give them the tools designed to develop and improve their brains. Today everyone doesn’t need to come to NACD to work on their processing. You can take advantage of this expertise and go online and in about fifteen minutes a day put together the pieces that can help you and your children work to become smarter. The tool that is available to you is our Simply Smarter program, a tool that your children can use all by themselves!

Let me help you understand what this all really is and what it can mean for you and your family.

What is “smart?” Can you define it? Do you think you would like your kids to be smarter? How about you?

You can define “smart,” possibly, but even more so, you probably know it when you see it. Smart has to do with being present, being aware, being able to take in and process a lot of information, being able to manipulate that information, think with complexity, put ideas together, focus, and communicate.

Smart doesn’t necessarily mean knowing that the capitol Nevada is Carson City, or that Sir Walter Raleigh was beheaded, or that the First World War ended on November 11, 1918, or what your bile duct does, or that “or” is a conjunction. But smart does mean that you are more likely to find such things interesting and you can learn them more easily than most. Knowing “stuff” doesn’t make you smart. (You are going to actually forget most “stuff” unless you are smart enough to make associations and connections between “stuff” and use it.) And smarter also means that it’s easier to understand and learn everything.

What is the foundation of “smart?”

The foundation of smart is the ability to process and take in a lot of information that you see and hear and to manipulate that information and think.

The more you can process and take in what there is to be heard, the stronger your auditory short-term memory. Your auditory short-term memory provides the fuel for the development of your auditory working memory, which is how many pieces or words you can hold together and manipulate, which equals your complexity of thought, or “smart.” How many pieces of visual information you process from what you see, whether from observation of your world or from reading, relates to your visual short-term memory; and as with auditory processing, your visual short-term memory provides the pieces you use to create your visual working memory and visual-spatial abilities. These fundamental, foundational pieces ultimately determine how much information you take in and use, which translates to how much knowledge you gain and your complexity of thought. All this equals “smart.”

How does processing “smart” develop?

Processing develops primarily from birth to about seven years. The rate and degree it develops is a reflection of the targeted stimulation and opportunities that you receive. In general the more quality one-to-one interaction between a child and an involved adult, the faster and the further it develops. The more enriching the environment, the faster and the further it develops. With specific targeted input designed to build processing skills, processing not only can be accelerated, it can be developed to superior levels.

When does the development of processing abilities stop?

Without specific intervention, the development of processing abilities almost comes to a halt at about seven years of age. From seven into our twenties, it typically develops perhaps another ten to fifteen percent; and after our twenties, without specific intervention it goes into a slow decline. You can continue to learn more, but your ability to do so declines, as does your ability to manipulate the information. As you continue to learn, you can become wiser, but not necessarily smarter, unless you are stretching your processing through complex cognitive activities or actively working to preserve or develop it.

How can you build processing ability and get smarter?

Everyone, from infant to geriatric, with input that is targeted to them, can incrementally build and improve processing ability and get smarter. We at NACD have been developing methodologies and improving processing abilities for the full spectrum of children and adults for over forty years. NACD designs specific processing programs for families who are members of NACD and who wish to utilize comprehensive developmental and educational programs designed so that they can be implemented in the home by parents and caregivers. But as mentioned earlier, NACD also has developed a very comprehensive targeted program for all children five years old and older and for adults up to and including seniors—Simply Smarter.

What is Simply Smarter?

The Simply Smarter program is a dynamic online system that constantly develops and modifies itself, adapting to the individual user to help produce maximum change. Specific activities work progressively to address focus, attention, intensity, auditory and visual short-term and working memory, visualization, conceptualization, and visual-spatial abilities, all of the pieces that help make everyone learn, think, and function better. The program first assesses your baseline and then builds from there, tracking and graphing progress. It has the capability of adjusting from basic levels of a child to levels of incredible function.

What can you do with children under five?

Children at or functioning under five years of age generally need specific one-on-one activities that are designed as part of NACD’s individualized programs. But in addition children from toddlers to five years old can use NACD’s Cognition Coach apps to build processing skills.

How long does it take to get smarter?

With motivation and consistent use, measurable changes can occur in a couple of weeks; and with continued use of Simply Smarter, virtually unlimited improvements are possible. Over the course of the present lockdown, you have the potential to produce a significant change.

Who has used Simply Smarter and what have the results been?

The range of those who have used NACD’s processing activities and Simply Smarter is as broad as the population. NACD’s Simply Smarter and other processing programs have been used by thousands of typical and gifted children and adults, those with learning and attention issues, as well as those with significant developmental issues such as autism spectrum disorder, Down syndrome, and brain injuries. Most everyone working on our comprehensive home based programs not only knows about processing, but is actively working on processing every day and understands the correlation between their child’s processing and global function and abilities. We have seen exceptional changes along the path of many thousands of children’s development and are continually heartened as we see their potential being redefined. Processing is a huge key to success and potential.

Please take this opportunity to change your child’s life trajectory. My mission in life has been to help change the perception of potential and to help develop the tools to do it. Today with more parents and children at home than ever before, I see this as a unique chance to change many lives and potentially change the perception of what can be.

To read an incredible testimonial from a couple about Simply Smarter and see what incredible things even a child can do, please read the following article and watch the video.

Reprinted by permission of The NACD Foundation, Volume 33 No. 4, 2020 ©NACD

The post My Greatest Discovery – How to Make Everyone Smarter appeared first on NACD International | The National Association for Child Development.

When Bowen was almost three years old, we received a formal diagnosis of autism.

The diagnosis didn’t scare us, but the lack of therapies that were offered, particularly in our area of the country, did. We were looking at shuttling our child around to multiple 30 minute appointments, all in various cities, multiple times a week. We weren’t sure how we were going to live life or see any real change for our child. All of that frustration led us to keep seeking though, and that led us to NACD.

The moment I started reading on NACD’s website, I knew this was the program for us! NACD not only believes that you the parent are the best teacher and “therapist” for your child, but they also have the experience and years of success to show that they know what they are doing. Plus, your program can be done from home, meaning you have so much more time to truly make a difference for your child!

In September 2018 Bowen and I walked into our very first evaluation. Within minutes Lyn had taken my nervous energy and changed it into a cautious hope. She explained things about my child that I thought only I knew, and she explained them in a way that took a puzzle in my head and connected the pieces. It was as if she could read him like a book. She knew what we were struggling with, and she had a plan!

A year later Bowen is a very different child. Last year our communication was extremely basic and frustrating. He couldn’t tell us what he wanted or needed. Just getting through our day sparked tears for both parent and child and feeling like a failure as a mom because I didn’t know basic things like what he wanted to eat or drink. Now he speaks in full sentences and is starting to tell us what he dreams about at night and what he wants for Christmas. I know what scares him and what makes him happy. That in itself is priceless.

Bowen was in his “own little world” a lot of the time last year. That’s not the case anymore. On a weekly basis friends and family comment on the changes they see, and his leaps and bounds continue to amaze us.

Words will never, ever be adequate for how thankful I am for NACD—and really we’re just beginning.

Reprinted by permission NACD Newsletter, November 2019 ©NACD

The post Bowen Oliver Finds His Voice appeared first on NACD International | The National Association for Child Development.

To be proactive is to anticipate, prepare, and intervene based on a long-term vision and perspective. When anticipating the future, you react accordingly before it actually happens.

To be reactive is to respond to a situation, rather than creating or controlling it.

How does this relate to what we do with our children? What we do in the short term affects the long term; and that myopic/short-sighted intervention can have a negative impact on outcomes.

One contributing cause is lack of a vision, lack of hope, and a willingness to accept a short-term possible solution. Another underlying issue is that most teachers and therapists are not involved for the long term and are not aware of the long-term results or consequences of their interventions. The third contributing factor is a lack of awareness and knowledge of the whole child. When looking only at pieces, one cannot perceive, acknowledge, utilize, or evaluate the impact on the gestalt of the individual.

Armed with decades of experience working with tens of thousands of “Whole Children”, it is relatively easy for us at NACD to look at your children and to be proactive. Being proactive requires looking at a child’s strengths and talents. In addition we must look at weaknesses and issues, determine what pieces we need to put together or issues we need to resolve, in what order, and in what priority to produce a good ultimate outcome. One of the benefits of working with “Whole Children,” working with the full spectrum of children, and working with individuals (often for decades) is that we have the benefit of experience and perspective.

Working with “Whole Children”

I have spoken at length about the importance of working with “Whole Children.” Working with “Whole Children” simply means we are working with all aspects of the child from their health, sleep, sensory function, social function, behavior, speech, language, fine and gross motor function, cognition, and academic development to their attitude, self image, etc. I don’t know if it is possible to be truly proactive without working with the whole child. Most children have disconnected individuals addressing various aspects of their lives, coming and going; and the more issues a child has, generally the more people there are working reactively, not proactively, with them. Working “reactively” means they are reacting to what is perceived as an immediate issue or need, without an historic or long range, long-term vision.

In discussing all of the people who can be involved with your child, you are tempted to associate them all somehow, to call them a team or an army, suggesting that they are somehow a cohesive unit working together. The reality is that they are individuals working with pieces, more often than not in virtual isolation. Such individuals are often working reactively, not proactively. They are working with their one piece generally in virtual isolation and establishing their piece as their priority and generally from a perspective that they are only going to be involved for a relatively short period of time. Working with children for only a few months, or even years, does not permit one to gain a long-term perspective and to understand the implications of what is in reality short-term, reactive intervention.

Proactive Intervention

To help clarify what it means to be proactive, it is best to look at the antonyms or words that are essentially the opposite of proactive. Those words include such things as myopic or short-sighted or improvident. Another way to look at this is to say we are being reactive as opposed to proactive.

Reactive Intervention

If we are being reactive, we are reacting to problems; if we are being proactive we are looking forward, into the future, so as to prepare for the future. As parents with limited experience, it’s often difficult to be proactive. It’s difficult to be proactive if you have not had the experience and knowledge to know the degree to which what is happening today, or not happening today, is going to influence tomorrow, next week, next year, and the future. Sadly, many therapists and educators do not work with individuals over long periods, as in decades, to understand what issues can be created by working perhaps hard, but not working from a long-term, proactive perspective.

Some common examples of being reactive rather than proactive would include things like teaching young children with Down syndrome to sign. (link to Signing contra-indicated for DS) The perception is that Johnny isn’t talking and is frustrated, so let’s give him a means of communication that he can use soon–signing. Looking at the short-term results, which may be the child being able to communicate a few basic needs and being perhaps less frustrated, reinforces the use of signing. But if looked at long-term and proactively, we discover that we have had a negative impact on the child’s ultimate ability to communicate verbally, and even more significantly, have had a negative impact on the development of the child’s auditory processing, with resulting adverse affects on the child’s cognition and global maturity. Reactive intervention is not the best intervention.

One of the more glaring areas where we often see disastrous effects of reactive intervention is in the area of mobility and walking. We sometimes have children come to us who never developed the neurodevelopmental or the structural foundation that can ultimately produce a child who is a functional walker. Being proactive, we know that we have to follow a typical sequence of development, which among other things, requires the neurological, tactile, proprioceptive, and structure pieces of the child going through the necessary developmental stages before working on standing and walking. Children in walkers who had been “helped” to stand before they had the strength and structure to do it themselves, or do it properly, and then “assisted” to walk using various apparatuses to hold them up so they could move their legs, usually end up not being able to walk independently. Often they have created structural issues that even numerous surgical interventions cannot properly address. Children you see walking with walkers or braces and crutches almost always end up in wheelchairs. Yes, the goal is walking; but can we achieve it by circumventing the foundational pieces?

An example of a reactive approach in education is encouraging children to write before they neuro-developmentally are ready. Sixty or seventy years ago, it was not uncommon to make left-handed children in kindergarten and first grade, at five or six years of age, write with their right hands. This practice was stopped because interfering with the natural development of handedness resulted in a plethora of neurological and even emotional problems. Today this isn’t happening; but today we have preschool education, which is even creating more problems by making children write before they developmentally have even firmly established a dominant hand. A child may be leaning toward the right hand, for example, at three or four, and if encouraged to write with the right hand, establish a skill set for writing with the right hand. Ultimately such a child may turn out to be left-handed. Because the skill set for this specific function was established, the child will tend to continue to write with the right hand and is generally encouraged to continue to write with the right hand, resulting in all of the issues that were created 60 years ago, including poor handwriting.

The Reality of Education

The reality of education in general is that the very structure and organization of school as we generally know it almost defines reactive intervention. Education is generally perceived from the short-term perspective of needing to get specific curriculum material into a child’s brain, whether or not the material is targeted to the specific child’s present knowledge base, to their level of processing and understanding, let alone their interests. The net result of reactive education is very often poor outcomes, children often learning to dislike or “hate” school, which becomes synonymous with hating learning; and often because of the abnormal environment of narrow competition, leaving the system with a damaged self-image and lacking a perspective of who they are and what they can be. Proactively it’s not difficult to understand that at the foundation of education we should have the goal of teaching the child to love learning and to make them feel that they are smart and can learn. Is anyone shocked to hear that children do well learning things they love and struggle with what they hate? If the goal of education is to produce adults who are actually educated, who become not just lifelong readers, but life long learners with the confidence to pursue their hopes and dreams, then the system needs to be re-evaluated and made proactive not reactive.

Educational & Therapeutic Perceptions

There are numerous examples in educational and therapeutic intervention that demonstrate the negative aspects of reactive intervention. The problem is ubiquitous, and it doesn’t seem to be changing anytime soon. Proactive intervention implores us to look at the child from a long-term perspective and with a vision and a plan to produce better outcomes. If existing outcomes are perceived as actual reflections of an individual’s potential, there is no motivation for change.

Perception of potential is a reflection of one’s experience. I recall a colleague correcting me many decades ago when I referred to someone as having twenty years of experience. He told me that the reality was that they had a year of experience twenty times, not twenty years of experience. I have been extremely disappointed to see how incredibly slow change in traditional education and therapeutic intervention has been. But doing the same reactive things year after year and producing the same limited results has not stoked change, but has reinforced the perspective of limited potential, and has encouraged many educators and therapists to keep doing the same things, producing the same inevitable outcomes.

Proactive intervention is stimulated by a need to do things better and to improve outcomes, all of which is perpetuated by a vision of what can be and what should be.

Reprinted by permission of The NACD Foundation, Volume 32 No. 5, 2019 ©NACD

The post Developmental/Therapeutic Intervention: Proactive or Reactive? appeared first on NACD International | The National Association for Child Development.

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Introduction by Lyn Waldeck

Let me introduce you to a lovely young lady that I think the world of, Ava Penkilo. I have had the pleasure of working with Ava for some time now and can honestly say that to know Ava is to love Ava. She is an exceptionally kind girl and a very hard worker. Not everything has come easy to Ava, but she and her mom are a testimony to what is possible with the right plan and the dedication to follow through. Ava has made good progress in many areas since coming to NACD, but the thing I want to brag about today is how Ava has grown in the areas of maturity and confidence through cooking. Over the years Ava has shared what she is learning in the kitchen with me. More than once she has gifted me with a special treat she has made when she comes to her evaluation. Along the way we started sharing favorite recipes and have had conversations about tools and techniques. At one evaluation she gave me a copy of one of her favorite cookbooks and another time an apron that she liked the design of. When a dear friend of mine recently published a cookbook, the first person I thought of was Ava, so I picked one up for her. This particular cookbook is not meant for beginners, and I was so proud of Ava when I started seeing pictures of her making “Creamy Ricotta Pancakes with Blueberry Basil Syrup” and “Cherry Pecan Scones with White Chocolate Glaze.” These were very complex recipes, and Ava did a fabulous job of both making them and presenting them. I have asked her mother, Monica, to share how cooking has had such a positive impact in Ava’s life.

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Ava

by Monica Penkilo

I recall a time about 6 years ago when a friend was visiting our home. Ava started to feel hungry and asked if she could make lunch. She made a peanut butter and jelly sandwich, and my friend could not believe it. She said her big kids could not do that. Ava smiled with pride.

Many years ago I let go of my fear of Ava hurting herself in the kitchen, and thankfully Ava has never had to go to the emergency room. One of her favorite Christmas gifts was a chef knife. “I want to help. Please let me chop the peppers. I’ll use my knife.” It is music to my ears hearing Ava verbally communicate with me in the kitchen. Although Ava has struggled with developmental delays since birth, she shines bright in the kitchen where she seems to find peace and calmness.

The kitchen is a source of learning, nurturing, increased fine motor skills, and confidence building for Ava. Ava’s self-esteem has blossomed in the kitchen. She learns by reading recipes, measuring and using math calculations in cooking, writing grocery lists, and following a budget at the grocery store. Chopping, slicing, stirring, pouring, and mixing provide endless fine motor activities. The occasional mistake, like forgetting a stick of butter in the cookies, turns into growing opportunities. And there are lots of high fives, words of affirmation, and happy people after eating Ava’s delicious food.

Ava loves baking with her sister and friends. It is one of the perfect social opportunities for her. They have baked themed cakes such as animal cakes, had cupcake wars, tea parties and cookie decorating fun. Ava connects with people in the kitchen and can often teach them something new.

Ava recently had her first official birthday cake order for one of our friends who wanted a rainbow cake. Ava ended up making a seven layer rainbow cake covered with sprinkles and a fondant rainbow topper. Ava was praised for her cake as being the most beautiful and delicious rainbow cake ever. Of course, Ava stayed humble, smiled and said thank you.

While we may make a few messes in the kitchen, it is still such a joyful fun, especially knowing Ava is making leaps in her development in the kitchen.

One of our favorite mealtimes is Saturday brunch. It is a time for testing recipes Ava finds in cookbooks, and when our family comes together to eat the amazing food Ava helps to prepare with love. Maybe Ava will host community brunches, have a bake shop, or be a chef in the future. Only time will tell for Ava, our sweet baker and cook.

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NACD Newsletter, November 2018 ©NACD

The post In the Kitchen with Ava appeared first on NACD International | The National Association for Child Development.

It appears that middle ear fluid (otitis media with effusion) is a significant problem for children with Down syndrome. Our experience at NACD with literally thousands of children with Down syndrome indicates that middle ear fluid issues are ubiquitous and are of tremendous concern relative to the global development in this population.

For forty years NACD at any given time is working with approximately 300 children and adults with Down syndrome from all over the world. We work with the “whole” individual and look for correlations between issues to determine how to best address problems and global development.

One of the ongoing issues affecting overall medical care and therapeutic intervention, particularly as is it impacts children with developmental issues and complex interdependent issues, is the compartmentalization of the care. At NACD we are acuity aware of the importance of working with the “whole” child. Looking at isolated pieces can lead to ongoing issues that can have very significant impact on the child’s development and could possibly be remediated if the need were perceived based on the totality of the impact.

When looking at the “whole” child, it is possible to identify discrepancies in development. Development in children with Down syndrome typically follows “normal” development. This development, albeit slower than normal, follows the same patterns and exhibits the same associated developmental pieces as ‘typical” children. In areas where there are inconsistencies in the development of associated pieces, it is necessary to identify underlying cause. Often when language is delayed more than other areas, the underlying cause is something that is adversely affecting the hearing.

When dealing with a problem such as middle ear fluid, we want to address cause when possible. Mucus and congestion are virtually synonymous with middle ear fluid. It would appear that we could avoid at least part of the fluid problem by more aggressively addressing the cause of mucus. Many children have allergies that can be treated, but mucus-producing foods are in most every child’s diet. It would appear that if we could eliminate dairy and gluten from our children’s diets, we would probably go a long way toward avoiding or mitigating these issues.

Children with DS have anatomical issues that increase the prevalence of middle ear fluid. These issues include large adenoids, small nasopharynx, impaired swallowing, and narrow and abnormally horizontal Eustachian tubes. These anatomical issues, coupled with the fact that children with DS tend to have excessive mucus and excessive earwax, further complicates the problem. Middle ear fluid issues often resolve themselves in typical children; but the anatomical issues associated with DS make this substantially more difficult.

One of the issues that appears to create problems for children with DS is that middle ear fluid, even if considered in the “normal” range based on tympanic testing, can still have a significant impact on the hearing and development of this population. Over the course of decades, we have seen numerous cases where at parents’ insistence tubes were inserted even though tympanograms indicated that fluid was still within “normal” ranges.¹ Following many of these procedures the doctors commented after the procedure that there was much more fluid than expected. It appears that for the majority of children with DS having received tubes, even when the need based on the exams and testing was questionable, there were virtually immediate positive changes in language development. I leave it to the ENTs (otolaryngologists) to research and determine if different testing, norms, or criteria are needed. This is clearly an area requiring further investigation.

Complicating the issue as to whether or not to place tubes is the issue of what level of baseline testing is needed. Often children will have a flat tympanograms, and the doctor’s recommendation is to wait two, four, or even six months to repeat the testing. For a child, particularly a child with delayed language and cognitive development, two months or more can have tremendous impact on the child’s future development. If the doctor wishes to be cautious, repeat the tympanogram in two weeks. One might also consider the child with chronic congestion who will have some degree of associated chronic middle ear fluid. Why not in such cases insert tubes to assist with the mechanics and help drain the fluid? When this issue is seen relative to its global impact on the development of the child with DS, I believe aggressive treatment can be justified. Tubes would appear to be a relatively simple, inexpensive, benign treatment that can have significant, if not dramatic, impact on a child’s development and future.

To understand the significance of this issue, let’s look at developmental issues that can result from perhaps even a moderate issue with middle ear fluid.

Middle ear fluid issues have a negative developmental impact on numerous foundational developmental issues including:

• Hearing

• Receptive language development

• Expressive language development

• Speech/articulation

• Auditory sequential processing, short term memory, working memory, and cognitive development

• Attention

• Reading

• Balance, mobility, walking

• Visual tracking, convergence, strabismus

Hearing

Hearing involves sound waves moving into and through the outer ear and impacting the eardrum. The sound waves vibrate the eardrum, which in turn produces movement of the three small bones of the middle ear. The middle ear is a cavity containing air that should have the same atmospheric pressure as that outside the body. The pressure is regulated by the Eustachian tubes, which go from the middle ear to the upper part of the throat. The sound waves then produce vibrations on the oval window that then transmits the vibrations to the fluid in the inner ear, which in turn stimulates the hair cells of the cochlea, transforming the vibrations into nerve impulses that enter the acoustic nerve and then the brain. It is the brain that actually interprets the information and “hears” the sounds or words.

One of the immediate issues with middle ear fluid is resulting hearing loss. Numerous studies have equated hearing loss in DS to middle ear fluid. ^2,3 Conductive hearing loss, which is common in DS, is usually caused by middle ear fluid, but can also be caused by excessive wax.

Receptive Language Development

Receptive language refers to the ability to understand language. Every child begins learning to understand language by hearing specific words in association with specific objects or events with sufficient frequency, intensity, and duration. The consistency of this input is imperative for the child to literally learn to hear and understand. A completely deaf child receives none of this auditory input; a child with a hearing loss receives poor input; and a child with inconsistent input resulting from variations in middle ear fluid receives often less than the necessary quality of input needed for receptive language development. Receptive language is the first step in the development of expressive language, speech, and cognition.

Expressive Language Development

Expressive language/talking has been historically one of the biggest concerns for children with DS. Sometimes those not understanding the foundational issues will out of vexation resort to sign language or augmentative communication to facilitate communication and avoid frustration. Lack of function should not be perceived as a lack of potential or inherent ability to develop that function. If a child with DS is not talking, there is a reason that needs to be identified and addressed. Rarely do children with DS have oral motor issues or apraxia to such a degree that it prohibits the development of basic language, even though such issues can affect the speech. Significant delay in the development of language in a child with DS is virtually always a reflection of an issue with hearing or inconsistent hearing.

Speech/Articulation

Developmentally we refer to speech/articulation as the production and clarity of speech. A significant component of speech is oral motor function, which is a very common issue with children with DS. However, you cannot reproduce what you cannot hear. Middle ear fluid issues can produce issues with learning to process specific frequencies of sound. If you cannot hear, or if your brain does not learn to hear, a specific frequency, then it can’t be reproduced. Case in point, there is not an “r” sound in Japanese, and even for a native Japanese speaker who becomes fluent in English, the “r” sound may be next to impossible to learn because when their brains were learning to hear, the opportunity to hear that sound did not exist. Repeating the word “rice” typically comes out as “lice,” regardless of the number of times they hear the word spoken correctly. Audiograms, which only measure typically six frequencies, do not identity very specific frequency issues. We have used voice analysis to gain a better understanding of specific frequency issues and have discovered that they are extremely common. I would like to see research directed at seeing whether voice analysis could be used to accurately assess hearing more specifically and objectively than an audiogram or in conjunction with and audiogram.

Auditory Sequential Processing, Short Term Memory, Working Memory, and Cognition

Language and the development of language is primarily a reflection of the development of auditory sequential processing. Expressive language will not exceed the ability to sequentially process, hold, and mentally manipulate auditory information. Auditory sequential processing/short term memory is measured in pieces of auditory information that can be processed in a sequence or chain. This is often tested and measured by how many numbers you can hear presented in a sequence at one-second intervals. It could also be measure by the ability to listen to and repeat random words also heard at one-second intervals and repeated or how many simple directions one can hear in a sequence and then carry out. Generally, a child who can follow one simple direction will use random isolated words, working into functional use of individual words. As the child moves into being able to follow two-step directions, they will begin using two and then three-word phrases. When they can sequence three pieces, they will start using four, then five words in a sentence. As their auditory sequential processing increases, so does their receptive and expressive language.

The foundation of working memory, which is now appropriately being called the new IQ, is built upon the short-term memory. Working memory essentially represents complexity of thought and is reflected in global maturity and executive function. All of this put together represents cognition, which is simply that which permits us to learn, think, and communicate.

Issues affecting hearing in the first few years can have a negative impact on the development of all of these critical pieces, an impact that may not be able to be entirely remediated, or which requires years of extensive specific targeted intervention.

Attention

Over six million children have been diagnosed with the mysterious “disease” of ADHD, which is termed as a mental disorder, rather than a developmental disorder. Perhaps this delineation is based on a perception that a mental disorder can be treated with drugs, as opposed to a developmental issue that cannot. I believe that one of the most common issues affecting attention is auditory sequential processing and that one of the primary causes of auditory processing issues is recurrent middle ear fluid in children. The inconsistencies in hearing adversely affect the child’s ability to attend to and process language, resulting in slow or underdeveloped auditory development, including auditory sequential processing. Negatively impact auditory processing and you subsequently negatively impact auditory short-term memory, auditory working memory, executive function, and global maturity. The term ADHD is at times used as a secondary or dual diagnosis for those with Down syndrome and other developmental problems, but the symptoms that result in this label exist in every child with a developmental cognitive delay. It is questionable at the very least to ignore the cause or causes and needed developmental intervention by attempting to mask the symptoms with medication.

Reading

Learning to read can be very negatively impacted by even minor hearing or specific auditory tonal processing issues. Teaching reading using an auditory tonal and auditory sequential processing approach, such as phonics, is often disastrous for those with Down syndrome because of their auditory issues. However, children taught reading through a more visually based sight word approach do much better. A visually weighted word attack approach still has a significant auditory component. Issues with auditory tonal and sequential processing have a negative impact regardless of the reading approach, but significantly less of an effect with a sight-reading foundation.

An additional issue relating middle ear fluid and reading is the role of the vestibular-ocular reflex in reading and writing. The vestibular-ocular reflex is a reflex that associates activation of the vestibular system and eye movements. Any interference in this reflex adversely affects the ability to maintain focus. There is almost constant slight head movement when one is reading or writing. Interference in the vestibular-ocular reflex negatively impacts the compensatory eye movements that permit the child to sustain focus.⁴

Balance, Mobility and Walking

Walking has a profound effect on neurological development and is associated with language and cognitive development. Children with DS often have issues with tactility, muscle tone and strength that can delay and or complicate gross motor development and walking. These issues are only compounded if the development of balance is compromised. Middle ear fluid has a negative impact on the inner ear’s balance/vestibular system, as well as the vestibular–ocular reflex, further complicating the development of balance, depth perception and thus walking.⁵

Visual Tracking, Convergence, and Strabismus

The vestibular system plays a significant role in the development of ocular control, tracking, and the development and severity of strabismus. The vestibular system as mentioned previously affects the movement and control of the extraocular muscles that are responsible for visual tracking and which need to work in concert to keep the two eyes working together.

It is not unusual to see children with DS suddenly develop a strabismus or to see it suddenly get worse.⁶ When we become aware of these issues, we suggest that the family visit their ENT first, not their optometrist or ophthalmologist, because the most likely cause of the issue is middle ear fluid. Strabismus, which is a misalignment of the eyes, can take many forms, but generally the family will observe one eye or the other going in toward the nose or out toward the ear. If a strabismus exists the child is unable to perfectly align the eyes together, with a resulting loss of depth perception. It would appear that even slight issues with middle ear fluid could have a negative impact on ocular control and a negative impact on a wide range of functions. 

Conclusion

Seen in isolation some degree of middle ear fluid may not appear to be of great significance. However, in viewing the global aspects of middle ear fluid we have an issue that can have wide ranging and significant impact on a child’s future development.

We urge parents and professional to be vigilant and to address ear fluid aggressively. Remediation of issues associated with middle ear fluid generally requires targeted, vigorous, dynamic, and coordinated intervention.

References

1. Ear Center: Ear Tubes (Bilateral Myringotomy & Transtympanic Tubes)
   http://www.earcentergreensboro.com/medical-education/ear_tubes.php
2. Otitis media with effusion with Down syndrome
   Int J Pediatr Otorhinolaryngol. 2013 Aug;77(8):1329-32. doi: 10.1016/j.ijporl.2013.05.027. Epub 2013 Jun 20.
   In this study one in three eight-year-old children with DS had current middle ear fluid and had verified hearing loss.
3. Balkany, T.J., Mischke, R.E., Downs, M.P. & Jafek, B.W. (1979). Ossicular abnormalities in Down’s syndrome. Otolaryngology: Head and Neck Surgery, 87, 372-384. Middle ear fluid issues account for 83% of hearing loss in children with DS
4. The influence of eye movement and the vestibular-ocular reflex in reading and writing. Rev. CEFAC vol.16 no.6 São Paulo Nov./Dec. 2014 http://www.scielo.br/scielo.php?pid=S1516-18462014000601791&script=sci_arttext&tlng=en
5. The effect of otitis media with effusions on balance in children. Clin Otolaryngol Allied Sci. 2004 Aug;29(4):318-20. https://www.ncbi.nlm.nih.gov/pubmed/15270815
6. Ophthalmic complications of otitis media in child J AAPOS. 2011 Jun;15(3):272-5. doi: 10.1016/j.jaapos.2010.12.018.ren https://www.ncbi.nlm.nih.gov/pubmed/21777800

Reprinted by permission of The NACD Foundation, Volume 31 No. 9, 2018 ©NACD

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In an effort to help our NACD families and others maximize their efforts and make the most out of the time they have to work with their children, it is incredibly important to keep reminding everyone about the significance of intensity.

The foundation of what we do at NACD is designing very targeted individualized programs that are created to help provide the maximum results, relative to the time invested. The significance of being targeted is that we stimulate and change the brain when we apply specific, organized, targeted input with the necessary frequency, intensity, and duration. Random input is just noise to the brain; disorganized input is irrelevant to the brain; and any input that is not received by the brain with intensity never happened.

We understand that intensity, the most important of the Super 3 (frequency, intensity, and duration), is not entirely a reflection of how loud or strong or exciting we are when working with our kids. The big factor is what the intensity is with which they are processing the input. Have you ever seen someone fall asleep at a party or in a movie theater or sporting event? These are all intense environments; but if that person is asleep, it has zero intensity for their brains—it didn’t happen. I recall the question I heard way back when in school—“if a tree falls in the forest and there is no one there to hear it, did it make a sound?” It’s not about you, it’s about them. Back to the folks at the party-how about if they are not asleep, but just dozing? Or, they just had a fight with their significant other and are running through the last argument in their mind one more time, or have a song stuck in their head that keeps going around and around. How much did all that “intensity” that is going on impact them? Probably not much. Ultimately intensity is based on how the individual is receiving/processing the input.

I have always related intensity and impact on a scale of 1-10. If something goes into a brain with the intensity of 9 or 10, learning is virtually instantaneous. Drop it down to 7-8 and we need a fair amount of frequency and duration to change the brain. If the intensity is only a 6, we need a lot of frequency and duration—many times per day and lots of days, weeks, or months. At a 5 we are in for a very long haul. And below a 5, we are better off taking a nap.

Let’s look at some of the things that affect intensity, starting with physiological issues. Diet is one of the things we talk about with all parents. I won’t get into the specifics of diet in this article but suffice it to say that if you feed your kids pancakes with syrup for breakfast, just send them back to bed and forget about school. Sleep is another foundational issue, and doing what is needed for both you and your child to get enough sleep is very important. So before we go any further, let’s see where we are. If what you are trying to put into your child’s brain is super exciting to them and they love it, they ate some good protein, had a great night’s sleep, and feel wonderful, you might get them to an 8. Trying to input something they might like but don’t love, drop to a 7; not a wonderful breakfast, drop to a 6; and then you were up with them for half of the night, we just dropped to a 5, and perhaps you are both getting ready for a nap.

Just yesterday I had a talk with a very nice family, great, concerned parents who have a teenage son on the autism spectrum. He has had a few small seizures that did not appear to have any residual effect and is on two different anti-convulsive medications. His doctors have also put him on two additional drugs that are used for schizophrenia and irritability. When I look at this boy, he looks like he is about to fall over with his eyes open. He’s at a 2-3 for intensity, and if you work hard, you can push him briefly to a 4, and on rare occasion to a 5. Under the circumstances we hope to maintain what function he has until these medications that all slow his brain down can be altered or eliminated.

Drugs that are used for seizure control and behavior and attention control are slowing down the brain. As a side note, the neurologists and neurosurgeons that I worked with almost 50 years ago were aware that the vast majority of seizures actually caused no harm, and my clinical observations over all of these years verify it; but we still have neurologists who see their mission as stopping all seizures, regardless of the fact that they are medicating the child to the point where there can be virtually no development. I’ve been happy to hear that after 50 years, there are a few neurologists acknowledging that not all seizures spell the end of the world and are being much more conservative with the medications. And fortunately there are new very promising alternatives to the drugs.

Diet, sleep, health, exercise, or the lack of, and medications all have an effect on the brain, your child’s ability to process information, and thus to be stimulated and develop.

I have a confession to make. I do not get regular organized exercise. I played sports, and I played them hard. I have almost always lived where I had a good size piece of land and always loved working outside and work hard. I enjoy walks and hikes, but a daily exercise routine—never. It’s a good thing your child has parents and helpers to help structure their days, establish priorities for them, and to motivate them and make things fun. Perhaps if I had some great fun personal trainer who came and got me at a specific time each day and praised my success, I might exercise. I probably would also need to add a 25^th hour to every day. As adults we are responsible for ourselves. We can choose to eat well, exercise, whatever; however we are also responsible for our children, and it is our responsibility to see that our children eat well, get their sleep, and do all the other things needed to help them develop well. Even the smartest child isn’t wise. We need to make the choices for them and keep them heading in the right direction. Side note: How many of you give your pets more nutritious diets than your kids?

The younger the children, the easier it is to make things fun and increase the intensity. I constantly hear that little Johnny is bored with this or that or he doesn’t like it. The reality is that it’s not about the activity, it’s about the environment of the activity and how it is presented. Remember Tom Sawyer and how he got the kids to paint the fence for him? Create the right atmosphere, and you can get your kids to have a ball cleaning toilets. If something doesn’t hurt, you can create an atmosphere that makes whatever you are doing fun, and if something hurts, stop doing it because something is wrong. If you can’t get your intensity or their intensity above a 5, what should you do? You should go take a nap and come back to it later with good intensity.

One of the most common issues I see when watching program implementation is a lack of intensity when a child gets something right or does something well. I can observe someone working on processing, and the difference in the response when the child gets something right or wrong is almost indistinguishable. Often when reviewing program implementation videos, we have to pay close attention to see if a child got something correct or not because we can’t tell the difference from watching the reaction of the parent or caregiver.

Children of most any age will respond to your positive attitude and words of praise. If older children need something more to get their intensity up to adequate numbers, then explore some form of a positive token economy, where achievement as a reflection of their trying and doing something with sufficient intensity to impact their brains can purchase special privileges and such. But always let your child know that you are proud of them for their efforts and achievements. Don’t reward compliance that does not equate with intensity. Reward achievement even if you have to initially make it a bit easier for them so that they can experience success.

One of the most common killers of intensity is duration. Many of the activities we give children have a duration of only a minute or two, and the duration we give is a maximum. Maximum, not minimum. More often than not, more turns a positive into a negative. We encourage parents to, if at all possible, end an activity on a high note. Parents tend to continue an activity until the child has had it, and it turns negative. The result of that is the next time you go to do that activity the child recalls it as a negative, not a positive. Imagine giving your child the forbidden fruit—ice cream. You give them just a spoon or two and they love it and you stop. They want more. Now imagine that you gave your child a couple more of spoons of ice cream—still loving it—and then you gave them a small bowl. They’re still loving it, but not quite so much. Then make them eat a large bowl, having to force them to eat it over the course of an hour; and to really make it fun, make them eat more and more until they throw up. That would sure teach them to love ice cream. When should you have stopped? We have the ability to turn most anything that can be positive and fun into a negative. Remember: it’s all about intensity.

The big secret to success is intensity—the intensity with which your child takes in the input you are providing.

Intensity is not only foundational, it is mandatory: Get it?

 

Anything that adversely affects your child physiologically has a negative impact on intensity: Get it?

 

Any mediation that affects your child’s brain is likely to have a negative impact on their intensity: Get it?

 

What you do can affect your child’s intensity, but ultimately, it’s a matter of doing what works to create intensity in them: Get it?

 

Too much of a good thing is a bad thing; stop while you are ahead: Get it?

 

If your intensity or your child’s falls below a 5 and you can’t raise it, take a nap: Get it?

 

To be successful we need to provide your child with specific targeted input with sufficient frequency, intensity, and duration: Got it?

 

Good!

Reprinted by permission of The NACD Foundation, Volume 31 No. 8, 2018 ©NACD

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