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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Today’s spotlight is on a fine young man who I have known since 1996. Yes, that is correct, 1996. I have been with NACD long enough now to have several adults that I have seen since they were infants, Nicolas Cooke being one of them. When I think of individuals that I have the greatest amount of admiration for, Nicolas is certainly on that list. Born with Down syndrome, Nicolas has been seeing us since he was an infant. Over the years I have been so proud of how he shines. Nicolas has developed into a wise, responsible, hardworking, strong young man of excellent character.

Nicolas has done very well in developing physical excellence and participated in his first triathlon at age eight. Nicolas’s mom, Linda, is a swim coach, and knowing the importance of physical exercise, she had Nicolas swimming at an early age. I remember the two of us reminiscing that he went from crawling, creeping, and walking right into a child who could compete alongside typical peers in a triathlon. Today, at age 24, Nicolas is involved in bodybuilding and martial arts and has been featured in a piece by a local gym where he works out.

Nicolas is very active in his community and his church. He has participated in a theater group and is a favorite within the children’s ministry, where he dresses up like Shaggy Dog and teaches children about God. At church Nicolas not only works in the children’s ministry, but he is also on the worship team and can be caught from time to time playing his guitar. One of Nicolas’s additional stomping grounds is at a local horse barn where he works part time. Linda says that Nicolas is on quite a few “speed dials” when it comes to needing help with various projects. Each morning, while Mom works and coaches, Nicolas is very diligent in his responsibilities, cooking, cleaning the home and pool and focusing on his education. Nicolas also assists in caring for his invalid father who suffers from a debilitating, degenerative neurological disorder. Being the youngest of nine children, Nicolas now has eight nieces and nephews that he loves to read to, play with, and supervise.

Linda knew that working on appropriate behavior and manners and teaching him to have a strong work ethic were crucial in helping him to be a highly capable adult. She and I can look back on his “stubborn years,” being thankful that she always kept firm boundaries in preparing him to be an individual that other people would seek spending time with.

In talking one day with Linda, she commented on the fact that Nicolas can clean her house better than anyone she could ever hire. His attention to detail and making sure each and every job is well done is a real asset. At the time Mom said, “I bet he could even be hired out and do a better job than any other cleaning company,” and then her eyes lit up. At the next evaluation I was pleased to hear that Nicolas already had a few clients.

It is a pleasure to work with so many wonderful families through NACD; and I am so blessed to be able to follow a number of our NACD kids and watch them become such fabulous adults. Nicolas is a man who makes each and every life he touches that much better.

Reprinted by permission NACD Newsletter, February 2020 ©NACD

Read the full article about Nicolas here: https://www.easttexasmatters.com/news/local-news/adaptive-athletes-shine-at-east-texas-gym/

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For many children and young adults with whom we work, it is summer. For our families in the Southern Hemisphere school has recently resumed, but there will be those rather long school breaks. Parents often question what to do with these “breaks” and vacation times so that they really feel like fun and are rejuvenating.

There are some very basic rules here. If you stop doing something and your child rapidly forgets what they have learned, then that isn’t a good idea. When you resume working with your child, you will find that you then have to waste a lot of time reteaching what they had already learned before the break. Whether it is mobility, vision, speech, cognition or academics, if you are going to lose ground, don’t skip the activity! This applies most obviously to math. Reading is also an area, with our beginner readers in particular, where if you don’t use it you lose it. Having to start all over again with math or reading is really discouraging.

If you just moved up in processing or knee walking, crawling or creeping don’t stop now! Mobility can be done anywhere as long as you have a few things that you might need, a yoga mat, a blanket, an incline or a beach, there are ways to adapt to get these critical activities done without just staying home.

The most portable activity of all time is auditory processing. This take-anywhere, do anytime activity can just be rolled in with whatever is going on as long as the child is awake and alert. Get your inspiration from your environment. Whether it is numbers and letters from car license plates or colors you see in the woods around you, objects they can see at your vacation spot, or ingredients in your special meals, processing is adaptable.

So how do we make this work so that the children don’t feel like they are missing all the fun, and we are gaining improvements and not sliding backwards? Actually, it is really easy. We input review information quickly. We ask for brief output and we keep moving. This works well with math and sight words. It is fast and fast is pretty fun.

With my granddaughter, I love to show her a word card just for a moment and take it away. It always makes her laugh and she almost always gets the word correct after thinking for a minute. There are many ways to turn these fast reviews into play. We’ve had parents who had the children bounce a ball on a word and say it or squirt a water gun at a word the parents asked them to find. Words are portable, so take them wherever you go.

Reading is a fantastic activity whether you are reading to your child or he or she is reading with or to you. If you are traveling, you can read about where you are going. If you are enjoying a holiday, you can read about that. Funny books are great for breaks, funny poetry books or joke books are great for breaks as well. Reading books that you, the parent, love will make the summer or holiday more special for you and your child. Nothing makes a trip better than books on audio so don’t forget those!

Many parents and children agree that math is definitely not fun. Fortunately, there are plenty of math fact games and math operation games that make output a bit more interesting. I have had several parents do a very high-intensity strategy with math facts and greater than or less than. Using some very valued food snacks, the child is presented with either a math fact or a greater than or less than question. If the child gets the wrong answer, the parent eats some of the snack, if the child is correct, he or she gets to eat the snack. That’s high intensity.

When there are program activities to be done that don’t lend themselves to fun, check with your coach for ideas and also look at getting much of the program done early in the day, leaving the rest of the day to feel more like leisure time. During those times look for opportunities to do things you don’t normally do or go places that you don’t typically go. Uniqueness and novelty are good for all of us. It engages our attention, stops rumination and opens up opportunities for wonder and discovery.

I often hear parents refer to program as work. In many ways it is work for us and for the children. I would like you, however, to present it as an opportunity rather than work. It is an opportunity to win, to do something better today than you have ever done it before now. It is an opportunity to have a reason to celebrate. It is an opportunity to reach a goal that you have set. If we want children and young adults to feel empowered, we help set very short-term goals that are reachable. Each time a goal is reached, it reinforces to the child and to you that this progress is something you can achieve.

Today I talked with a mom whose child followed a one-step verbal direction that she had never been given before and this was a huge triumph. This turning point with a child demonstrating an understanding of language and a verbal direction for the first time was achieved through months of effort and determination. It was a victory and opens the door to many other victories to come. The brain is able to change through, you know the line, frequency, intensity and duration of the right input. So, it is not about breaks but about input.

There is another key feature of vacations and holidays, they offer opportunities to show off to other people. Whether your child is showing that he can now creep to his cousins or showing his grandmother how he can pick picture cards, read sight words or name things in a book, this is a wonderful opportunity for your child to get some high intensity, positive feedback and encouragement. It will do you good too as it rewards you to show others the gains that your child is making.

Childhood and young adulthood are wonderful times and we all have great memories of our summers and our holidays. Let us help you adapt what needs to continue to be done to suit your situation. After all, your child and your family are unique, and we endeavor to adapt the program to that uniqueness. We also have decades and decades (in my case decades, decades, and decades) of experience making program activities efficient, effective and often quite fun.

We share your impatience for success and improvement. In order to achieve this, we need continuity of input for sure. This input can often be done quickly. This input is often portable, and this input can sometimes be done while doing other things. So do not feel that you must either abandon your program entirely because you are on a break or struggle through it the same way you have always done. We are really here to help, just an email away. We have not only our own ideas and suggestions, but also the many, many great ideas that parents have shared with us over the years.

Summer breaks and holiday breaks are wonderful times when we can spend more time together as a family doing fun and relaxing things. Working together, we can help you find ways to incorporate what needs to get done with the things you hope to do. I encourage you to share your summer and holidays with us by posting on our Facebook page about your progress, your fun times and your wonderful child. Please stay in touch with your coach so that we can help make this your best summer or break ever.

Reprinted by permission NACD Newsletter, June 2019 ©NACD

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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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National Association for Child Development

One of the areas of parental concern for the development of any baby is the area of mobility. Watching a baby learn to crawl, creep, stand and walk are thrilling to all parents. As a parent we can see our child learn to better explore their world and move from dependence to independence sometimes in the time span of the first year.

As a parent of a DS child, you may have a special concern about your child’s development of mobility. Cardiac conditions can slow down the emergence and development of mobility. The potential or reality of low muscle tone and poor tactility can also slow down development in this area drastically. Parents are often tempted to skip mobility developmental stages in an effort to reach the coveted skill of walking more rapidly. The consequences of this strategy can be very long lasting and impact other developmental areas as well.

Why stomach crawl? Crawling on your stomach on the floor in a cross pattern is hard work. Aside from people training in the military, few of us have spent any time past our first year of life utilizing this movement. What is to be gained by doing it, and why does your baby need this essential first form of locomotion? There are several reasons. Your child’s eyes begin the work of learning to focus and converge together on near-point objects, a skill which is needed for everything from reading to depth perception. The tactile feedback given by the entire body moving against the friction of the floor teaches your child the location of the entire torso, arms and legs, and feet and hands. Proprioception, knowing where your body is in space, is based on these early messages of tactile input on the floor and feeling every movement through the feedback of this contact. The child is learning that they have two legs, two arms, two feet and two hands because they can feel these parts moving against the floor. Crawling engages virtually all of the muscles of the body, from the arches of your feet to your abdominal and neck muscles, all of which are used in the process of moving your body forward across the floor. Arm, chest and back muscles are utilized in pulling the arms forward and then pulling the body forward. Quads, hips and hamstrings are worked during the leg movement. This is a workout!

Learning coordinated movement starts here with crawling on the floor. Whether the child picks up the cross pattern movement on their own or they learn it through parent assistance, this is the beginning of that very fundamental movement of a right arm and left leg, left arm and right leg– the movement we use to walk and run, climb stairs and climb hills. When the child learns this by working on the belly crawl, they get all of that helpful tactile information through the limbs and through the torso, laying a strong foundation for more advanced forms of mobility. They also develop a very critical physical piece through crawling– muscle balance. The crawling movement is one of flexion and extension of the arms and legs, pushing and pulling using the flexor muscles, then the extensor muscles. One of the issues confronting many parents of children with Down Syndrome is that they are often advised that the child needs to begin developing trunk strength and tone through sitting because it is this lack of trunk strength and tone that creates the problem with crawling and walking. If sitting were the best thing for the development of the trunk, every adult would have strong backs and great abs. Sitting is not what develops the trunk; crawling and creeping is. The child should not sit independently until they can get themselves into that position independently, which is typically after they have learned to crawl on their tummy and creep on their hands and knees.

Another very significant aspect of crawling involves the integration of sensory input. Crawling provides the brain with what is quite possibly the best integrated sensory input that a child ever receives. This act of crawling sends simultaneous information to the brain from all of the tactile and proprioceptive receptors, the surface receptors, the deep receptors and the proprioceptive receptors in the joints. And not only is the brain receiving all of this input, it is receiving it through the simultaneous input from the movement of the right arm and left leg, and the left arm and right leg. This is very powerful sensory-integrating input. Many children, when they start to move forward on the belly, have to learn where their pieces are before they can really start coordinating their movement. Many start by just pulling with both arms together or both legs together. These children are learning where their arm and legs are. Then with a little time and help they begin to alternate arms or legs, and sometimes they get the arm and leg moving on one side of the body, or leave out one leg. As children go through these phases, they are getting more and more input, developing tactility, strength, tone, muscle balance, vestibular balance function, and proprioception. Furthermore the brain is learning to integrate all of this critical information. Given some time and some help, their brains and bodies can learn all of these critical developmental pieces and establish the foundation they need for all future physical and neurological function. It is also important to note that those children who find it the hardest to crawl need it the most, for they are the ones who really need to put all these pieces together properly.

Some children move through this stage very quickly and move on to creeping on hands and knees. Some children take longer to learn this stage and may need a great deal of extra input to locate their limbs in order to be able to control those movements. This may take longer than parents expect, but is time well spent. Children moving from a good cross belly crawl to a good cross pattern creep on hands and knees are in good shape to move on to developing proper walking. Children moving from rolling to scooting to sitting to walking have not had the opportunity to learn where they are in space and how to move their limbs in an organized fashion, nor have they developed the proper muscle balance or strength. They potentially have not even learned how to focus on close objects or to use their eyes together for depth perception.

Short cuts and quick fixes will lead to later repercussions. Don’t take the chance. Try to do it correctly the first time and avoid thousands of hours of time in the future in physical and occupational therapy trying to overcome the problems that are often created by skipping this critical developmental activity.

Reprinted by permission of The NACD Foundation, Volume 22 No. 12, 2009 ©NACD

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