by Bob Doman

Who would have thought that one of the potentially most harmful “tools” available to our children was something as educational and entertaining as YouTube? For many children and young adults with developmental issues, it is.

Our work at the National Association for Child Development involves working with the whole child and all aspects of their development. From sleep and diet, to reading and cognition, to social function and behavior, to how they spend their day and how they entertain themselves. Our job is essentially to see where all the pieces are, how they are fitting together or not, and how to work with the family and the child to maximize the child’s function and potential.

We work internationally with the full range of children. From those with severe brain injuries, to those on the autism spectrum, to genetic issues such as Down syndrome, to learning and attention problems, as well as “typical” and talented children. Working with this broad range of children provides us with an opportunity to gain many insights, not the least of which are what tools can be used to our benefit or that can become harmful. For many children, particularly, but not exclusively those with developmental issues, YouTube can have a negative to devastating effect on their global function, wellbeing, and development.

When the iPad first came out, I heralded it, and still do, as both a tremendous developmental and educational tool and source of entertainment. For many children with developmental issues, we finally had an instrument that served as an entire portable toy box and toolbox, an instrument that taught them everything from cause and effect and how to isolate and use their index finger, to how to speak (NACD Apraxia apps) and to think (NACD Cognition Coach apps), therapeutic videos, and an almost endless list of educational and entertaining content and access to a world’s worth of information.

For many parents of our lower functioning children, having something that their child could engage with all by themselves was a godsend. Not many children are going to sit by themselves and entertain themselves putting rings on a post. With the tens of thousands of apps for young children, it was a fairly easy task to find apps that the child enjoyed and to follow a progression of apps that push and follow the child’s development. For an educator and a developmentalist, the iPad and subsequent tablets are certainly some of the greatest inventions ever.

One of the amazing effects of the iPad was how quickly children learned how to use it, and not only use it, but navigate and control it. I have been amazed to watch children with severe handicaps and typical kids as young as two and three navigate and find everything they want on their device, often better than their parents. This facility of children to navigate has, however, created some unintended issues.

For many children one of the favorite and most preferred functions of the iPad is to use it as a vehicle to watch YouTube videos. How some children who can’t even read are able to navigate and find specific videos is rather amazing, but many do it and they do it well.

I first became aware of the issue with YouTube with our children on the autism spectrum. Many of these children have a tendency to get stuck on specific things, with videos being at the top of the list and with music coming in a close second. For more than forty years, I have been hearing parents tell me that their autistic child would watch the same video over and over. Not over and over like four or five times, but over and over like many hundreds of times. I was also hearing of children who, if they had control of a VCR or disc player, would keep rewinding and watching little snippets of the video over and over. What we came to realize was that the children memorized these videos or snippets and would get a huge endorphin rush every time what they anticipated happening did in fact happen. Quite simply, they became addicted to the video or their favorite parts of the video. Why else watch it over and over and over again? In some cases, the addiction was so strong that there was nothing, including eating, that the child would voluntarily do over feeding their video addiction. As it turns out, the iPad and YouTube provided the perfect pairing for creating and feeding the children’s addictions.

One of the issues for many children on the autism spectrum is lack of eye contact and not being present. For many of these children their ability to visualize, think in pictures, is exceptional; and if they become addicted to a video or a specific event, they can “watch” that event over and over again in their mind. If you are visualizing, thinking in pictures, you cannot really simultaneously process what you see well enough to engage in the moment, in the real world properly or to be entirely present. As an example imagine (but don’t really do it) driving on a freeway in rush hour traffic and computing something like 379 plus 86 in your head. Most of you to complete this task would need to picture, or visualize, the numbers to do the computation. Guess what you wouldn’t be doing while completing the problem? Would you believe watching the road. The more mental ammunition these children have to visualize, often the less present and engaged they are. This issue has become exacerbated for many children because of YouTube.

YouTube is the perfect vehicle for these children. It offers an endless variety of short videos that the child can easily locate, stop, go back to their “spot,” and revisit as often as needed. Many of these kids also find related videos easily as well. One of the favorite subjects for some of the children on the spectrum is roller coasters. This has to do with the imbalance between their central and peripheral vision and an attraction to movement and edges, which roller coasters abound in. Some of the children become amazingly talented at finding roller coaster videos, of which there is an almost endless supply on YouTube. The biggest video culprit isn’t roller coasters, however, it’s music videos.

When children watch the same thing over and over, or listen to the same song over and over, or even want the same book read to them over and over, we refer to it as perseveration. (See video below.) In addition, the perseverative child will perseverate with thoughts that lead to perseverative behaviors or actions that involve the senses, often leading to DSAs—Debilitating Sensory Addictive behaviors, or “stims,” all of which are harmful.

We tend erroneously to believe that most of what we know we were “taught,” but in truth most of what our brain processes and what we learn from our world, we learn simply by being present and aware. If a child spends hours a day watching the same YouTube videos over and over and then spends great chunks of the day not really being present, but watching the same videos in their mind, then they are not present, not learning, not engaging in life, and not developing as they should.

In school it is often the quiet child who doesn’t make waves or get into trouble that gets ignored. Unfortunately, many of these children and young adults who are off getting their YouTube fix fit into the same category. Parents and caregivers are happy that these children and adults on the spectrum, or with Down syndrome, or other issues that tend to slow down and misdirect development are quiet, happy, and occupied. Tragically we have seen many children and young adults left to their own devices—pun intended—become more and more addicted to their videos, with a resulting slowing down of their development or even regressing.

Parents, beware. Excessive screen time can be a significant problem—excessive perseverative screen time can be a disaster.

Here are a couple of links to assist you in restricting access to YouTube or other apps:

• https://www.imore.com/how-restrict-siri-airdrop-and-carplay-parental-restrictions-iphone-and-ipad
• https://www.guidingtech.com/block-youtube-screen-time-iphone-ipad/
• https://support.apple.com/en-us/HT201304

Of note, fortunately I have yet to hear of any children perseverating on any of my many YouTube videos. They’re safe and educational, not fodder for perseveration, I hope!

Reprinted by permission of The NACD Foundation, Volume 33 No. 7, 2020 ©NACD

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The Simply Smarter® program is built upon the foundation of neuroplasticity, utilizing the science of targeted input, frequency, intensity, and duration.

Targeted

The program constantly modifies itself to keep you right at the sweet spot, the spot that is targeted for you to achieve maximum benefit.

Frequency

To take advantage of neuroplasticity, we need to keep triggering the firing of neurons and reinforcing neural networks. Everyone is encouraged to use the program once or twice a day and preferably four or more days a week.

Intensity

This is an incredibly important piece. The importance of intensity cannot be overstated. How you or your child approach every session is going to determine how much the program impacts, changes, and develops the brain. Just doing it isn’t enough; you must do it with real intensity and with intention. Every activity is very short. It was designed that way so that you could create and maintain maximum attention and intensity for the seconds needed to complete each piece that you are asked to process, to watch, or listen to. Approach every sequence of every activity with the intention of remembering it, of nailing it!

If your children are using the program, sit with them, if you can, and cheer them on. The program has built-in rewards and acknowledgement, but a parent’s power is much greater, and we encourage you to provide very meaningful, big rewards for new high scores or higher digit spans. These changes can be life changing, treat them as such.

We realize that it’s not reasonable for many parents to sit in while their child does Simply Smarter®, so we have built in the means to send email and text alerts so that Mom, Dad, grandparents, coaches, whoever will know when the child did well; and each can provide their own congratulations, making every step forward all that more meaningful. Dad coming home from work and immediately acknowledging Johnny’s new high score or a call from Grandma can be very powerful.

For adults be honest with yourselves. Sitting down with good energy, intensity, and with the intention of knocking it out of the park each time is difficult. You are not only allowed but encouraged to set up your own rewards program—rewards for all new high scores. Set digit span and processing power goals, and when you hit it, reward it. It’s only your life and future that you are changing!

Duration

To change the brain, we need to keep causing those networks of brain cells to keep firing together. The longer we do it, the greater the change. Keep in mind that generally without specific intervention the development of processing, short-term memory and working memory, slows virtually to a halt at about seven years of age, creeps a tiny bit forward from then until we are in our twenties, and then usually begins a slow decline that continues throughout our life unless we target it, address it, and build it!

Simply Smarter® is an invaluable tool that has the potential to change the lives of your children, your parents, and yourselves.

Reprinted by permission of The NACD Foundation, Volume 33 No. 7, 2020 ©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.

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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A newly published study explored the effects of reading to your child versus having them use other media, such as watching a cartoon or listening to an audiobook.

“In a single generation, the explosion of screen-based media has transformed the experience of childhood, from TV and videos, to an unlimited range of content available at any time via portable devices that can be challenging to monitor,” said Dr. John S. Hutton, one of the authors of the study. “The emergence of these technologies has far outpaced our ability to quantify its effects on child development, human relationships, learning and health, fueling controversies among parents, educators and clinical providers…” Hutton is a researcher and pediatrician at the Cincinnati Children’s Hospital where he studies the processes of learning how to read.

In the study, 27 children, each around age 4, were observed in an FMRI machine. They were given the stories three different ways: audio only; the illustrated pages of a storybook with an audio voiceover; and an animated cartoon.

Using only audio, the language parts of the brain were activated, but there was less overall interaction. There was evidence the children were not fully understanding the information.

With the cartoons (animated images with audio), there was a lot of brain activity and perception, but not a lot of interconnectivity between the various types of processing. “The language network was working to keep up with the story,” says Hutton. “Our interpretation was that the animation was doing all the work for the child. They were expending the most energy just figuring out what it means.” Comprehension of the story was found to be the least effective when viewing the cartoons.

When shown illustrations along with being read the story, instead of only paying attention to the words, the children’s comprehension of the story was helped by the illustrations. “Give them a picture and they have a cookie to work with,” he explains. “With animation it’s all dumped on them all at once and they don’t have to do any of the work.”

In the illustrated book version of the test, researchers noted better connectivity between all the brain networks: visual, imagery, language and more.

Reading to children seems to have the added effect of stimulating their imagination more as they attempt to “fill in the blanks” between the audio and the simple illustrations. If their language and auditory processing development is not yet developed or is falling behind, it may be that reading to them using a book with illustrations will help them keep up and comprehend better.

The overall implication of the study appears to show that for kids who have a hard time keeping up with the auditory and visual information coming in with an animated cartoon, may be helped by using the illustrations to form a better mental picture of what they are reading and hearing. Not to mention the physical and emotional bond that is formed by reading to your child.

While it’s not always possible to read to your child and certain cartoons can be stimulating and also educational, mixing in some one-on-one reading time using books with illustrations can be an effective way to build your child’s visual and auditory processing.

Sources

NPR.org – Learning & Tech – What’s Going On In Your Child’s Brain When You Read Them A Story? by Anya Kamenetz – May 24, 2018

Assessment of Screen-Based Media Use in Children: Development and Psychometric Refinement of the ScreenQ – John Hutton, Jonathan Dudley,Tzipi Horowitz-Kraus, Thomas DeWitt, Scott Holland

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by Bob Doman

Developmentally, behaviorally and educationally children tend to get stuck. The younger the child, the lower the child’s processing or the slower the child’s development, the easier it is for them to get stuck.

To understand why these children tend to get stuck, we need to understand how they think. Virtually all young children or low processing children are visualizers. This simply means that if you have low auditory processing and only have the means to think in a few words, that you rely on your ability to think in pictures to function. As they have said, a picture is worth a thousand words and for these children, more often than not, there are not enough words to change a picture.

Many things for young children are place and person specific. For example, my little 20-month-old granddaughter has different rituals and behavior patterns for most of the adults in her life and different rituals and patterns for these individuals in different environments. If I go over to my son’s house and pick up little Ari, she immediately reaches in my shirt pocket for my phone so that I will play some apps with her. She doesn’t do that with anyone else. However, when she comes to my house and I pick her up she is asking for my dogs or pointing to the pantry where the special Ari crackers are. These specific people and situational patterns exist for all of the adults in her life. Most of these patterns got started with a single event, an event that created a mental picture of that certain person in that certain place. As soon as she sees that person in that place, it triggers the visual memory and pattern of what is expected. A child’s ability to modify the picture and to not get upset about a change is generally related to their auditory processing and their ability to think their way out of a pattern and get unstuck.

For many behavior patterns, particularly for low auditory processing children, you can only change the behavior pattern by changing the picture. Issues around eating illustrate many different aspects of this.

Lets start by looking at children with a limited list of foods that they will eat. To some degree, what they want and what they refuse to eat is related to familiar tastes, textures, odors and cravings, but to a large extent it depends on the picture and pattern. If a child is given the same food or foods in the same form (pureed, mashed, small chunks, etc.) in a particular place such as their highchair in the kitchen, that creates a little mental video. The more times the event is replicated the stronger becomes the video. The stronger the video the stronger the behavior pattern and the more difficult it becomes for the child to accept something that doesn’t fit the picture. These pictures can quickly generalize, which means the pattern becomes strong enough that it continues in other places and if permitted to generalize to a second place its easier for it to generalize to a third and so on and so forth. However, often the way to change the video is to change the set. Many parents discover that their picky eaters will eat something at Grandma’s house that they won’t eat at home, or a restaurant, or a picnic, or a friend’s house—someplace with a different picture. A different person, even at home, can create a new picture.

The greater the variety of foods, food consistencies and places where a child eats and whom the child eats with, the easier it is to avoid negative patterns. If for example, Mom is the only one who feeds the child and Mom sings while feeding and the feeding is always in the same spot and the food is the same and the food looks the same and smells the same, you are well on the way to creating a very strong specific picture/video and pattern that is going to be very difficult to break.

The next piece of this puzzle involves children eating with parents or family and children being fed alone. If a child is fed alone, what is the picture that is being created? What the child does and doesn’t eat or do is the picture. It’s a really short movie without a lot of characters or sets. In my experience little children who have their highchair at the table and who eat with the family learn quickly to accept a much broader range of foods, consistencies of food and learn to finger feed and then eat with utensils much faster than children who are fed alone. What models, what pictures do children who are fed alone have other than the one they create? A child eating with the family sees what everyone else is eating and how they are eating and smells what they are eating and hopefully shares what they are eating. This creates a very different educational picture and generally a very different outcome.

For these young or low processing children to change a pattern when they become stuck requires changing the picture.

Many of our families doing NACD TDI programs are working on improving their child’s processing ability with the understanding that with increased processing power comes higher receptive and expressive language, level of cognition, maturity, problem solving, etc. Essentially the child becomes more educable and easier to work with and live with. It’s a bit ironic that for these young or low processing children the thing that is going to help move then forward is one of the more difficult things to change, because we need to change the picture or motivate the child to move beyond their comfort level and change their own picture or behavior pattern. For example, if your child can do an auditory object sequence of 3 (they listen to you say the names of three objects and they then repeat the sequence) and has been at that level for a long time, you very possibly are having a hard time breaking that pattern and getting to a four. How do you get them unstuck?

Breaking a pattern and getting them unstuck requires creating a new picture. Perhaps a new place or new people will work. If that doesn’t work, you need a different strategy. Understanding that if their picture is them doing a 3, the odds are pretty good that as soon as you say a fourth number you have broken the picture and they have shut down. Hear a 4 and shut down—broken pattern, broken picture. One of the things we encourage parents to do in general to partially avoid this issue, is to give the child a variety of different levels of sequences to avoid creating too strong a pattern or picture. Rather than saying a lot of 3’s and trying to throw in a 4, you give them a 2, then a 3 then a 4, a 3 a 4 a 2, etc. We are hopefully having the child be successful (an important part of the script) and we are avoiding establishing a strong pattern of 3’s (trying to keep it off the script). Once a pattern has been established, or if we need to ease into a higher level, we can make the transition easier by doing what we call bridging. Bridging is done by cheating a bit. Rather than giving the child a real 4, which is four words said in the same tone at one second intervals, we cheat by either repeating the third word (cat, monkey, horse, horse) or we chunk (cat, monkey—horse, dog) by chunking the first two words by saying them together then a space and another chunk of two words. After we are successful at bridging 4’s, we add some legitimate 4’s. We are slowly changing the pattern and the picture in small increments.

Another way to get unstuck is to add some intensity. You might want to exchange the word intensity with reward to understand this unstuck procedure. Rewards can add sufficient intensity to move a child forward. A child gets stuck because it works for them. Having things stay in a familiar pattern keeps the child in their comfort zone and every time an event fits their picture, they get a little endorphin rush and take another step toward becoming addicted to the pattern and the outcome. So, if maintaining the picture is in the child’s best interests and has them stuck, we often need to provide something stronger that is in the child’s better interests. The stronger the pattern to be broken, the bigger the carrot needs to be to get them unstuck.

Having watched thousands of people do activities like processing, sadly its often difficult to tell from the reaction the child gets as to whether the child got a sequence correct or not. Often the result of getting one right is the honor to do another and another. It is surprising how often there is no feedback whatsoever. The quality and specificity of the feedback is really important and if you are trying to get unstuck, look for really big rewards to change the picture. “Give me just one 4 and we’ll get a pizza!” When they get the 4 and the family immediately goes and gets a pizza, guess what that creates? A new and better picture. You can screw this up by not changing the new picture really fast. If you did this a few days in a row and Johnny got a pizza for every 4, guess what? You have created an amazing pizza video—could be a tough one to delete. So, you use the big gun to break the old picture and then you lower the power and use sustainable rewards. But, if you get stuck again when you are going for the fives, change the picture and bring out the pizza.

So, we have a number of tools to get us unstuck, we can get unstuck by creating new pictures by doing things in new places, with new people, in new different ways and with strong rewards. What else? How about new videos to replace old videos?

We have been having parents create therapeutic videos for many decades. Often the best way to put a picture into a child’s mind is with a picture. We have used therapeutic videos to show a child how to do everything from produce a “B” sound to how to make their bed, to modeling getting a 4 and seeing someone get rewarded for it, to putting down a toilet seat. Not too tough and the child is much better for watching and learning from new therapeutic videos than watching that YouTube video for the thousandth time.

If you don’t like the picture give your child a new one.

Reprinted by permission of The NACD Foundation, Volume 31 No. 5, 2018 ©NACD

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A 2012 study of child prodigies conducted by Joanne Ruthsatz and Jourdan B. Urbach found that all the children studied tested in the 99th percentile for working memory.

Each of the child prodigies tested at what was considered a moderately elevated intelligence and exhibited high scores relative to their attention to detail. But the most exciting results were the working memory, with each child testing in the 99th percentile.

This study helps confirm Bob Doman’s and NACD’s 40 years of experience of addressing and developing working memory in children. Having helped develop working memory in many thousands of special needs and “typical” children, NACD has had firsthand knowledge of just how key this vital function is to every aspect of a child’s ability to learn, think, and perform.

NACD’s experience also suggests that the elevated intelligence and attention to detail exhibited in these children is at least in part a reflection of the benefits of their superior working memory.

NACD has been at the forefront of understanding the tremendous importance of working memory and developing tools to aid in its development. The NACD Foundation Simply Smarter Project has been an attempt to heighten awareness of the importance of this essential neurological building block and to bring tools to the world to help take advantage of neuroplasticity and help everyone build their working memory.

Related Links

• Simply Smarter
• NACD’s Simply Smarter Project
• NACD Cognition Coach Apps

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Understanding and remediating the neurodevelopmental issues of those within the autism spectrum is critical if we are going to provide these children and adults with an opportunity to overcome their issues and to function at higher, “normal,” or even “superior” levels. It is important to understand that most neurodevelopmental issues will not simply go away. Merely teaching new skills or applying aggressive medical or nutritional intervention without addressing the underlying neurodevelopmental issues may change some function; but if the neurodevelopmental foundation is not established, abnormal neural patterns and function are only going to perpetuate the underlying problems, and the results are going to be limited at best. The view held by many that children with Autism Spectrum Disorder (ASD) have only limited potential and cannot substantially overcome their issues reflects the overall misunderstanding of the problem. There is a lack of attention to the uniqueness of each individual and a general misperception that we are dealing with a specific disease, waiting for a pharmaceutical cure or single intervention or magic bullet. However autism is not polio or chickenpox; you can’t catch it. It is neurologically based, regardless of the initial cause or causes. I am sure we will ultimately see that there are many causes, and like other developmental problems, that there is neither a single cause, a single solution, nor any two children who have exactly the same issues. The disease model is leading many parents, researchers, and practitioners in the wrong direction. Those with ASD are unique individuals. Yes, there is some commonality; but each individual has their own set of issues and underlying problems and associated hierarchy of needs and should not be perceived as having a disease. Again, I believe there are many causes of ASD; but the perception of autism as a disease is counterproductive.

Those who have issues that place them within the autism spectrum are aptly identified as having a pervasive developmental disorder. “Pervasive” correctly implies a whole or inclusive developmental problem affecting most or all aspects of the child’s function. The implication of this perception is that truly successful intervention and remediation requires not only a gestalt, or global, perspective of the associated developmental issues, but also must serve as the basis for prioritizing and approaching the issues as hierarchical. As an example, some of the hierarchical foundations of language include hearing, auditory tonal processing, auditory figure-ground processing, auditory sequential processing, auditory short-term and working memory, conceptual thought, executive function, general neurological organization, knowledge/experience base and, of course, need. If we are to look at a really complex function, such as social interaction, we need to address a plethora of neurodevelopmental issues in a balanced, targeted hierarchy of neurodevelopmental pieces. Merely wanting to produce a function, or asking for a function without establishing the foundation, is grossly inadequate.

Although each child is unique, there are some neurodevelopmental issues that I believe are expressed in varying degrees in virtually every individual on the autism spectrum. Successful intervention necessitates an understanding of and attention to these fairly universal neurodevelopmental components and needs, including:

Interrelationship of Neurology and Physiology

That which impacts the child’s physical function impacts their neurological function. Most children with ASD are extremely physiologically sensitive. Diets, medications, supplements, and interventions need to be applied with a gentle scientific hand, measuring and evaluating the effects of each specific component with an understanding that generally many interrelated aspects of physiological function are involved. Aggressive intervention often interferes with efforts to trigger positive neuroplasticity, which creates additional problems. Also, as the neurological function improves, so does the physiology. The child becomes healthier and less physiologically sensitive. Intervention needs to be applied gently, with the goal of producing overall health and wellness. 

The Need to Address DSAs (Debilitating Sensory Addictions)

I coined the term “DSA” a number of years ago in appreciation of what I realized was the developmentally negative and addictive nature of what are commonly called “stims” or “stimming.” Back in the early seventies we realized that the behaviors exhibited by many autistic children were very similar to what were called “blindisms” and “deafisms” in the blind and deaf communities. These ritualistic behaviors were simply the child playing with their underdeveloped or broken sensory channels. For the child with ASD, their stims, which can involve any of their sensory channels or combinations of channels, reinforce what is wrong with that channel and trigger what is called “negative neuroplasticity.” I include “debilitating” in the term because triggering negative neuroplasticity is in fact debilitating, and it impairs normal sensory function and development. It is addictive because the brain appears to react to such stimuli as it would any other addiction. The more you do it, the more you want and need it. Some DSAs are obvious, such as rocking or flapping the hands; many more are subtle and often ignored, such as watching the same video repetitively; but all are neurologically and developmentally harmful and debilitating. Remediation and intervention should include strategies to appropriately engage and redirect the child, while working to normalize the sensory channels and eliminate the addictions.

Normalization of Sensory Function

The brain develops based on the perception of the input it receives through the sensory channels. How we hear, see, feel, taste, and smell defines our world. All neurodevelopment is based upon brain plasticity. Simply stated, this means that all perceived input and brain activity affects, develops, and reinforces the wiring of the brain. Brain function is based on patterns and associations; specific sensory input, as it is perceived, stimulates the brain and triggers neural growth/connections/networks that physically change the brain and its function, whether for the good or bad. This process is called neuroplasticity. In ASD the foundational issue in the hierarchical list of concerns and treatment is normalizing sensory dysfunction. If the brain does not correctly process sensory input (thus interfering with the typical neurodevelopment and triggering what is now being referred to as negative plasticity), typical development goes awry. In the computer world they refer to “garbage in, garbage out.” Function determines structure; how you use your brain determines how it develops. Normalization of all these sensory channels establishes the foundation upon which neurodevelopment can occur. Most children with ASD have a variety of sensory issues affecting most, if not all, sensory channels. Normalization of sensory issues involves providing the child with very specific targeted interventions, creation of a controlled sensory environment, elimination of DSAs, and creation of activities that foster sensory normalization. An hour of appropriate sensory normalization therapy can be undone with five minutes of negative sensory immersion, whether self-initiated or environmentally based.

Development of the Foundation of Language, Thought, and Global Maturity

The components of the cognitive hierarchy, including sequential processing, short-term memory, working memory, complexity of thought, receptive and expressive language, conceptual thought, long-term memory, and global neurological and developmental maturity, are critically linked. For those with ASD, the issues produced from sensory dysfunction have a negative impact on this cognitive hierarchy that is in direct proportion to the degree of sensory dysfunction. Addressing and developing this cognitive hierarchy must be a focus of successful intervention.

Correcting Imbalances Between Visualization and Conceptualization

One of the more pervasive problems with those in the autism spectrum is the difficulty in being cognitively “present,” which is a reflection of the more significant underlying problem–poor conceptual thought and typically exceptional visualization. I use the term “conceptualization” to refer to thinking in words as opposed to pictures. The vast majority of autistic children are very strong visualizers and poor conceptualizers. This imbalance exists because the typical cognitive hierarchy gets obstructed. All children begin life without the ability to process language, and thus start off as visual learners and visual thinkers, or visualizers. In typical development, language processing starts kicking in within months, and the child generally develops a good balance between visualization (thinking in pictures) and conceptualization (thinking in words). Following this normal cognitive hierarchy produces an individual who can use both skills when and as needed. Disruption of this normal progression creates individuals who are too good at visualization, who do not process words well, who do not think in words well, and who therefore cannot use words well. They tend to go off into their own worlds, reliving videos or situations over and over, creating another form of perseverative DSA. One cannot develop typical language or social skills if one cannot adequately process language, understand concepts, and communicate. Remediating this imbalance necessitates the implementation of many targeted activities. It also requires that the parents understand those things that feed the visualization and perseverative DSAs, and that they apply the necessary environmental controls and restrictions.

Education and Behavior Management

Effective and efficient education and behavioral management require a thorough understanding of the child. To educate or simply manage a child with ASD, it is imperative that you first understand the uniqueness of the child, where they are on the cognitive hierarchy, how they process information, how they think, and what they know. Then based upon this collective perspective, a totally individualized educational and behavioral management program needs to be created.

A comprehensive and coordinated treatment approach for children with autism involves educating the parents and creating specific neurodevelopmental programs for each child. These programs and treatment protocols must address health and wellness, sensory issues (visual, tactile, auditory, olfactory, and taste), processing problems (auditory and visual), lack of development of and imbalance in visualization and conceptualization, fine and gross motor function, cognitive and academic function, and speech and language, as well as behavioral and social issues.

Children with ASD, like any children, are capable of attaining their innate potential, and they deserve the opportunity to do so. Successful intervention must address the uniqueness of each individual, each of their developmental areas and issues, and must include a large amount of parent education. Working together as a team, we can significantly change the lives of individuals with autism and their families.

Reprinted by permission of The NACD Foundation, Volume 29 No. 3, 2016 ©NACD

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T. asks: My three-year-old son loves to watch the same videos over and over again. This is driving my husband and me crazy! But our son throws a fit if we don’t put on the video he wants, so we almost always give in. Is it okay for him to watch the same video a hundred times?

Dear T., Anything you can’t do without is called an addiction. Addictions are not good at any age, let alone at three years old. Although TV can be a great educational tool and a good source of entertainment, too much of a good thing is a bad thing. Children at your son’s age are prone to getting stuck on things, and at the top of the list are particular videos or specific characters (such as the dreaded “Barney”). But if your son is watching the same video repeatedly, he is not learning anything new. He is developing a habit fed by having memorized the video and anticipating what is coming next. Every time an anticipated event occurs, the brain reacts by producing a flood of powerful “feel-good” chemicals known as endorphins. Because the video remains the same every time he sees it, your son is able to count on the pattern of anticipated events and the endorphin rushes that follow.  The cycle repeats over and over, creating a chemical addiction in your child’s brain. His physiological system actually begins to crave seeing the video in order to get the guaranteed rush of endorphins again. That is why he throws a tantrum when he cannot have the “fix” of his cherished video. If this sounds a little scary, it is. The brain can produce chemicals as powerfully addictive as cocaine and other illicit drugs.  Therefore, the best thing to do with videos your child is obsessed with is to have him go with you and give them away. After the initial fit, he should stop demanding them within a couple of days.

When it comes to television and videos, a general guideline for a three-year-old would be to provide as much variety as possible, continually exposing the child to new input. Limit total TV and video time to two hours per day. And make sure at least one of those two hours is spent viewing educational TV and videos.

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M. Asks: My two teens want to stay up half the night and hate getting up in the morning for school. Do you have any suggestions?

Dear M., Many teens are wired such that they need a lot of sleep and prefer to get it from 3:00 a.m. until noon. Some schools are finally acknowledging this and are starting school earlier for the elementary school children, who tend to get up early, and later for the teens. However, most schools still follow a traditional early-morning schedule for teens. So, let me start by saying there are no really great solutions, but there are some basic guidelines that can help.

First, establish a specific time your teens must get up, and maintain it throughout the year as much as you reasonably can.

Second, avoid having entertainment sources in their rooms. TV’s, computers, and video games are all going to add to the problem. Keeping these sleep-avoiding instruments out of their rooms can help teens get to sleep earlier. As much as you can, make their room a place where they read, do homework that does not require a computer, and sleep. Entertainment should be something that happens someplace else in the house. Third, create the proper atmosphere. Environmental sounds are available on CD that include everything from the sounds of ocean waves to the pleasant rhythms of a light rain shower, and many CDs designed for relaxation incorporate classical music selections in which the beats per minute correlate with sleep patterns. Fourth, make getting up their responsibility, not yours. You should not be pulling them out of bed to keep them from being late for school. Make sure they have a loud alarm clock, and then lay down significant consequences for being late for school. Wish them luck, and stick to your guns.

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

Reprinted by permission of The NACD Foundation, Volume 20 No. 2, 2007 ©NACD

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Now what?

After a month in ICU and three months in a rehab facility, my son was finally home. Not having another option, my husband, riddled with guilt, went to work; I stayed home to care for Trevor—all alone, young, and inexperienced. I longed for my own mother, who lived a world away in South Africa, to come and take care of me. Trevor was alive, but just that. He could sit up with support and that was all he could do. My healthy, rambunctious baby was no more.

Trevor, at 14-months old, had slipped from his father’s arms and hit his head on the tile floor. All that happened next seemed as one indescribable, endless nightmare. Initially Trevor was given a 10% chance of survival; but if by some miracle he managed to pull through, the prognosis was that he would forever be in a vegetative state, wheelchair-bound, blind, silent, and kept alive with machinery. Although my heart was beating, I felt dead. It took five long days, intensifying the damage to Trevor’s brain, before the inter-cranial pressure receded enough for a ventriculostomy to be done. The neurosurgeon informed us that this procedure was by no means a “high card” and was at best the last desperate attempt to bring the ICPs down. Once he was stabilized, Trevor was taken off life support and, incredibly, was able to breathe on his own. But he wasn’t out of the woods yet. Each time he heard my voice, Trevor’s blood pressure and heart rate went through the roof, and he was put in a drug-induced, pentobarbital coma to give his brain rest.

For nine months after the accident we did conventional therapy with Trevor. We taught him to grasp, to swallow, and to sit up without help. But my soul was restless. The doctors and therapists told me not to make our home a therapy place—to let them, the experts, work with my child and hope for the best, but not much. Yet, I wanted to do more. After relentless hours of searching online I came upon The Institutes for the Achievement of Human Potential.

The week-long seminar at The Institutes in Philadelphia was held in an ice-cold auditorium packed with families seeking help for their loved ones. Like me, they had paid thousands of dollars in airfare, hotel, and registration fees to attend lectures on brain injury for 8 to 10 hours a day. I learned a lot, and for the first time I felt a glimmer of hope for Trevor. As part of the course at The Institutes, parents were required to submit a detailed history of their child. I found out once I was there that at the completion of the seminar parents were told to go home, to implement what they had learned, and to stay in touch. Occasionally, some were invited to bring their brain-injured children back for evaluation. I was one of the lucky ones—my 30-page report on Trevor was apparently detailed enough that we were chosen by The Institutes to bring Trevor in for a consultation. No other family in our group had that privilege bestowed upon them, and I felt a sense of pride that we were selected, as if my child and I were somehow extra special.

I was a mother who was willing to do whatever was necessary to make Trevor better. So I flew home, arranged for a relative to come along (as was required by The Institutes), and my husband and I took our severely brain-injured child on a cross-country trip back to Philadelphia. Once again we were subjected to more lectures training us for all kinds of injury, not just the type specific to Trevor. Meanwhile, our relative pushed Trevor from department to department for evaluation in different development areas. In the end, one of the staff members instructed us on how to implement the assigned program, provided us with all sorts of charts that periodically needed to be filled out and returned to The Institutes, and sent us home.

We soon discovered that The Institutes’ program was a tremendously intense seven-days-a-week commitment. They required that mom and dad were the only ones working with the child, and the program took every waking moment of Trevor’s day. Then, after he was in bed, one of us was busy preparing materials for the next day. The 10 hours-a-day program put a strain on our relationship and health, but we managed to somehow get everything done as assigned. Among other things, we did upwards of 80 masks a day, eight cross-patterning sessions, five categories of reading flashcards, and kept meticulous track of how many new words to introduce and what words to retire. We even brought Grandma and Grandpa from South Africa to assist with household responsibilities and for moral support. Eventually, we succeeded in getting Trevor to creep on his knees, but no matter how hard we tried, reading just did not take off. Perhaps because at that time he was functionally blind and a “reading” program was really pretend. Because we couldn’t teach our blind child to read for the 2 ½ years we were with The Institutes, Trevor was never invited to a follow-up evaluation. Instead, because I was desperate to learn about brain injury as much as possible, I attended further education lectures at The Institutes. We stayed in regular contact with our Institutes’ family advocate and diligently completed all of the assigned activities, but my optimism was waning.

Here we were with a son who, by The Institutes’ own words, had so much potential, yet they would not work with us only because he wasn’t able to read. I was frustrated and I was constantly on my knees. I just knew there had to be a way to help Trevor improve. Then one day, while searching online, I stumbled upon NACD’s website. While investigating, I discovered that Robert J. Doman, Jr.’s father and uncle had created The Institutes for the Achievement of Human Potential, but aside from sharing a common last name and dealing with neurodevelopment, the two Doman organizations were and still are dramatically different in their philosophies, methodologies, and execution. I also learned that Bob had never associated with The Institutes, nor did he accept The Institutes’ approaches.

It took me some time to contact NACD, as the Institutes strongly opposed seeking guidance elsewhere; but when I finally did, I felt a renewal of confidence. Right away I was put in touch with an NACD mom who turned out to be a great support to me in those first few months of transition. I was impressed and relieved that the NACD staff facilitated contact among their clients, while The Institutes had discouraged us from discussing with other parents about our experiences with Glenn Doman’s organization.

Unlike The Institutes, where we never saw Glenn Doman, Trevor’s first NACD evaluation in the fall of 2003 was conducted by Robert J. Doman, Jr., the director and founder of NACD. Bob didn’t promise an overnight “cure;” nonetheless his calm, even voice was like a balm to my troubled soul. Since NACD branches can be found across the United States and one was near us, we didn’t have to struggle with Trevor through airports. My son was more cooperative and relaxed as opposed to how he behaved at The Institutes, which made the NACD evaluation less stressful and more productive. At that first meeting with Bob, Trevor was essentially a baby at the age of five. He made very little eye contact and had slight cognitive understanding of what was going on around him. He babbled unintentional sounds, which we liked to think resembled “mom” and “dad,” clapped his little hands, banged his head repeatedly against the crib, and walked very unsteadily.

Gradually, with the implementation of the very realistic, doable, and individualized NACD program, Trevor’s coordination improved and his gate stabilized. As Trevor’s brain began to get organized, his vision also increased, despite the injury on the occipital lobe (which should have left him permanently blind). Trevor now sees, listens, and understands well and doesn’t give up easily when working on something difficult, like a new sound or a new word. He rides a tricycle at breakneck speeds, runs easily, and walks two miles at a time without tiring. His language grew from a few sounds to now four-word sentences. He is communicating his needs verbally, and conversations are now a realistic goal. This may not seem like much progress, until you look at his MRI—the black, fluid-filled spaces in his brain are so pervasive that where Trevor is today is truly a miracle. Before we started with NACD, the doctors recommended that we put Trevor in a home, to give up on him, because there would never be any functionality to his life. NACD not only gave us hope for something entirely different, it has delivered on the promise that allchildren, regardless of their condition or diagnosis, can accomplish more—if they are provided with the opportunity.

From the time of the initial communication with NACD, it was apparent that the differences between The Institutes and NACD were significant. As opposed to The Institutes’ practice to use exactly the same activities for all their clients during the last 50 years, our NACD evaluators draw from over 3000 techniques to adjust Trevor’s highly individualized program as needed, rejecting procedures that prove to be ineffective with Trevor and adding new methods in order to address his specific issues. Unlike the complicated activities assigned to us by The Institutes, each NACD program piece is simple to implement. The Institutes did not allow us to seek outside help with program; NACD encourages us to do it.

Being able to accept volunteers or hire helpers for Trevor’s program, as well as communicating closely with the evaluators about the smallest details of the program, has allowed us to have a more normal and fulfilling family life. Compared to the Institutes’ rigid and demanding schedule, the NACD program has been manageable to fit into our family dynamics. Our evaluators are careful to consult with us regarding the time we are able to dedicate to working with Trevor and recognize our desire to parent the rest of our children. All these factors have been vital in ensuring that progress for Trevor happens much quicker than anything we experienced while following The Institutes’ program. Amazingly, even 13 years post brain injury, big changes still continue to take place. For instance, Trevor’s language abilities have recently increased exponentially, quicker than at any other time thus far. In the last three months, Trevor has learned to pronounce /k/, /g/, and /w/ correctly and is diligently working on the /l/ sound. The NACD activities address Trevor’s specific brain damage and changed him from agitated and awkward to calm and happy, without an ounce of aggression—all devoid of drugs. He loves doing his NACD program; he is the happiest when he is actively engaged in learning and growing; and when Trevor is happy, we are all happy.

I am also very happy with the effect of the NACD program on my other two children, Troy and Ruby. Because her auditory processing is at 8 and her visual processing is at 10, six-year-old Ruby is like a miniature adult—clever, articulate, and capable of accomplishing tasks that a much older child would find challenging. She reads chapter books with impressive comprehension and competently does 3rd grade math. She is also great at working with Trevor, completing program with him, more skillfully and effectively than some adults. Troy is accelerated as well. His auditory processing is at 11 and visually he is processing at 13, which is reflected in his behavior and academics. At 11-years old, he is doing 8th grade math and reading at post-high school level. Recently we lost our helper, and implementing the NACD program in its entirety became a problem—until our NACD evaluator recommended that I train the younger children to do program with Trevor. So, for example, I would work with Troy while Ruby does some program activities with Trevor; then they switch and I work with Ruby while Troy does program with Trevor. When it is my turn with Trevor, Troy and Ruby do independent work, such as reading or listening to a recorded book. Although doing program in this way rarely leads to fulfilling 100% of Troy and Ruby’s assigned activities, they have not lost ground. In fact, just the opposite has occurred: in the three months that we’ve done this, Troy jumped forward a whole year academically!

It has definitely been a leap of faith to homeschool all three kids, but with the support of NACD we are doing a marvelous job indeed. After learning so much and seeing what NACD has done and continues to do for my brain-injured child, I couldn’t in good conscience send Ruby and Troy to a school. Their individualized NACD programs are helping them grow and learn at just the right pace. Troy and Ruby are proof that, as Bob says, “Under the direction of their parents, and with the assistance of NACD, typical children can become exceptional.” I am incredibly excited about what they will achieve next, and I am at peace knowing that working with my children is the most important job in the world; with each of them I am doing the right thing at the right time.

Brain injury is tragic and a hefty a price to pay for the knowledge I have gained about the human brain and child development. But sweet things have come from the pain and suffering. I am incredibly grateful that NACD is with me every step of the way as I continue to be an active participant in all my children’s future.

NACD Newsletter, Volume 6 Issue 6, 2013 ©NACD

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