by Sara Erling M.ED.

“Program has been a part of my life for as long as I can remember. For many years, the focus was primarily on addressing my physical, visual, and processing abilities. Despite ongoing physical and visual challenges, by the time I got through high school and into college, I had a solid foundation for academic success. My program has always been tailored to address my specific needs at any given point in time.

Being on an NACD program has made me very self-aware and has given me the self-knowledge necessary to effectively advocate for myself. Ultimately, it has provided me with a foundation I can build on for the rest of my life. I will be forever grateful to everyone at NACD for helping me grow into the young woman I am today.” – Sarah Benedix

Sarah was a preemie, had been diagnosed with Cerebral Palsy, right hemiparesis, and strabismus, and she was fed through a G-tube. When she was a baby, her parents came to NACD, as they were determined to help Sarah reach her fullest potential. I first started working with Sarah back in the early 2000s when I started traveling to Chicago to conduct the evaluations there. She was around six years old and had beautiful blonde braids with big blue eyes. She was already quite smart and witty at that time! When I stopped traveling as much to have my own babies, she started working with Ellen Doman. Fourteen years later, I was able to increase my travel again and returned to the Chicago evaluation site. It made me feel very old to work with Sarah again, as she was no longer the little girl in pigtails, but an accomplished young woman! What a transformation!

Over the years of being on an NACD program, Sarah’s parents worked very hard to develop her ability to walk, to eat, to use her eyes together, her fine motor development, her ability to communicate, and to think (cognition). As many parents of children with CP often face, working with muscles, tendons, and structural issues is not an easy task. However, if we simultaneously work to build a child’s cognition, it makes working with their bodies and physical development significantly easier. Because Sarah’s processing and global cognition was really high, it was, and still is, much easier for her to understand how to place her body, how to direct her movements, and how and why she needed to work on certain muscle groups. Sarah can walk well, run, do yoga, and really enjoys bike riding. Sarah could be taught how to do certain exercises by herself to assist in her gait and could understand how to do them correctly through verbal cues. In her words, she is very self aware.

Over the past 20+ years of being a part of our organization, Sarah has blown us away with her accomplishments. She received a Masters degree in Sports Administration from Valparaiso University in August 2019. She graduated in May of 2021 with her SECOND Masters Degree in Disability Services in Higher Education from CUNY School of Professional Studies. With this degree, Sarah hopes to “advocate for other students with disabilities in the future.” She is ready to fly. Sarah, we are all so very proud of you and feel blessed to have watched you grow into one pretty cool human!

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Reprinted by permission of The NACD Foundation, Volume 34 No.6, 2021 ©NACD

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

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

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

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

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

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

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

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

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

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

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

What is the foundation of “smart?”

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

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

How does processing “smart” develop?

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

When does the development of processing abilities stop?

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

How can you build processing ability and get smarter?

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

What is Simply Smarter?

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

What can you do with children under five?

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

How long does it take to get smarter?

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

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

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

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

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

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

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

by Bob Doman

I have introduced you to Coco previously here and here. Coco is now almost five and a half. For those of you who are new to Coco, he was born with a brain injury/cerebral palsy, with a very broad range of issues and a terrible prognosis. Previously I talked about the development of Coco’s processing abilities, which as you will see in the accompanying video, have not only continued to develop, but are now truly exceptional. Coco’s story is much more than a story of superior processing. Coco’s story is one of parents creating a vision of what they felt could be, then working with incredible focus, intensity, and intention to achieve it.

Coco’s father, Razvan, understanding how important these first years are to his son’s future, has put his career aside and moved his family to a new country, with a new language, which offered greater acceptance and future opportunities for his son and focused on the vision. None of this has been easy for the family. They have had to lower their lifestyle, and mom had to go back to school and start a new career and work on weekdays, while dad works on weekends. A year and a half ago, their second child arrived. Baby Ellen (named after my sister, their NACD coach), not to be neglected, has been on a program of her own and is doing great.

The Manole family “gets it.” They have a vision. Recently the doctors, therapists, and social workers who oversee special needs children in the area requested a meeting with the Manoles, who had declined any of their services. Based on communications with the family, the physician, out of concern for Coco, requested the meeting. Having the child’s medical records, the doctor was concerned because Coco was not receiving any of their services, and he felt that the expectations expressed by the Manoles for Coco were unrealistic. One of the sore points was the Manole’s vision that Coco would someday walk. The doctor found such an expectation as unrealistic under the “best” of circumstances, but certainly delusional if Coco was not even receiving the therapies, services, and assistance they were offering.

So the Manoles met with the official team and introduced them to Coco and his program. The net result of the meeting was that the team got the vision and now share the vision that unconventional parents, doing an unconventional program, not only could, but would if they continued do as they were, turn a vision into a reality.

The Manoles communicate with us very regularly (at times daily) and supply us with very regular program implementation videos. This level of communication and interaction has permitted us to continually modify program and program implementation in order to keep us targeted and thus to take the best advantage of neuroplasticity.

Coco’s dad, Razvan, is a man after my own heart—impatient. He’s not going to wait and see what the future will bring for his son. He’s going to create it.

Please watch Coco’s new video below. You will want to see what digit spans of 22 look like!

Reprinted by permission of The NACD Foundation, Volume 33 No. 1, 2020 ©NACD

Here is Coco’s reaction to seeing the article about him!

The post Coco Does it Again! appeared first on NACD International | The National Association for Child Development.

The lectures were organized by Gabriela Trichkova, one of our super NACD moms, and the Bulgarian Down syndrome Parents’ Organization. Gabriela was anxious to help educate both professionals and parents in Bulgaria about NACD’s perspectives, as well as help change the view of potential and offer a means of achieving better outcomes.

Bob’s Message

It was a great pleasure and an honor to speak with the folks in Bulgaria. Gabriela did a great job of organizing everything and making sure that I was well taken care of while in Bulgaria. Arriving in Sofia felt a bit like coming home. As the plane landed I could see the city laid out at the foot of the beautiful mountains that were still covered with snow. It looked just like landing in Salt Lake City, Utah. The mountain overlooking Sofia, from what I understand, is Vitosha, which is one of the symbols of Sofia, just as Mount Ogden is back home.

It’s interesting that upon arrival in a new county with a very different language and different form of government than ours, it felt like home. Throughout my stay, meeting, lecturing, speaking with the people, sharing meals with our NACD families, and touring Sofia, it only reinforced how much it felt like home and the people like family. As I travel and meet with families and professionals around the world, the word “foreign” is becoming more and more “foreign” to me. Children have the same needs, parents have the same love and motivation to help their children, and fortunately most of those working with children have their hearts in the right place and are looking for ways to do what they do better.

I was very pleased by the attitudes and interest expressed by everyone attending the lectures. The group was obviously bright and anxious to learn whatever they could to further either their work or their efforts with their own children. I felt that I was able to provide them with some new insights and perspectives and hopefully did enough to help change some children’s lives. From the response I received, I feel the conference was a success.

I wish to thank everyone who made my visit to Bulgaria possible and look forward to seeing and helping more and more of these children and families.

Below is a slideshow video of the event:

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Photo Gallery

The post NACD International Outreach – Bulgaria appeared first on NACD International | The National Association for Child Development.

THE PROBLEMS

The first problem faced by the parent of a hurt child is to discover just what it is that their child is, or has.  Whether the child’s problem is discovered at birth, or a week, a month, or years after birth, or even if the problem is created by some trauma such as an automobile accident during the teenage years, the problem of discovering exactly what has happened is immense for most parents.

Most people are extremely ignorant in regards to hurt children. Their limited information usually comprises a collection of “old wives tales,” and a few details about a child belonging to some distant relative or neighbor. As traumatic as the discovery that you have a hurt child is, the lack of information intensifies that trauma all the more.

The family physician who helped you through your last case of the flu, or who correctly diagnosed your neighbor’s heart condition often disappoints you in regards to your hurt child. He frequently cannot even tell you what is wrong with your child, let alone what to do about it. All too often his suggestion is to institutionalize the child as soon as possible. Doctors commonly wish that the problem would simply go away. Either at your doctor’s recommendation, or because of our own need for information, you may search further for answers by going to see a “specialist.”  The specialist usually takes the form of a neurologist, neurosurgeon, orthopedist, or a psychiatrist.  The visit with the specialist often is an even more upsetting and frustrating experience than the visit with the family doctor, because the “specialist” should know.

Why doesn’t your doctor know? Why doesn’t the specialist know? Quite frankly, they don’t know because almost no one knows! What is known about the brain today is extremely limited, and of what is known, much of it has just been learned in the last twenty years.

Some diagnoses are relatively easy to make, such as Down Syndrome, with physical signs which can be seen and chromosome tests which can be used for confirmation. Or to a lesser degree, cerebral palsy, which is used to describe most children with obvious motor problems.  But even with these problems, if you ask the physician exactly where the problem is, or what is going to happen to the child, the answers will probably be vague. Unfortunately however, of all the questions asked, the one which is generally answered with the greatest frequency and confidence is the one about which the least is known.  That is, what is to become of my child, or what is the prognosis (outlook).  Every hurt child is different and almost every hurt child has a chance, if given the opportunity.  If every doctor’s response to the question of prognosis is simply that he doesn’t know, and not that it is hopeless, many, many, more hurt children would improve, and some would have the opportunity for “normal” lives.

SYMPTOMATIC DIAGNOSIS

In order for the parent to begin to understand the nature of their child’s problem, it will be necessary to explore the vague and contradictory terminology applied to children with problems.

Of the many terms used to categorize children with problems, few are attempts to describe the source of the problem, rather they are descriptions of the symptoms. In that a child may possess a variety of symptoms, a number of different symptomatic labels may be attached to each child. In addition to the problem of more than one term being applicable to an individual child, there is within the fields dealing with such children tremendous difference of opinion and controversy over the definitions and applications of specific terms. A thorough discussion of terms could easily comprise an entire volume in itself, and is outside the scope of this particular text. I wish only to give the parent some understanding of terms which may be applied to their child.

In order to simplify the parent’s task of acquiring some understanding of the various terms, I will endeavor to define each specific term as it relates to the general term of cerebral palsy, and as it affects or relates to a child’s functional abilities.

CEREBRAL PALSY

Cerebral Palsy is a term applied to a group of individuals whose primary handicap is physical, as opposed to mental. These children, as a group, exhibit problems which affect their ability to gain mobility (crawling, creeping, walking), to use their hands (eating, writing, dressing), and to verbalize or talk. This large group is subdivided into lesser groups based primarily upon the specific way in which their muscles, or the control of their muscle function, is abnormal. Within each group the level of severity varies, as well as the areas of the body which are affected. There is also a great deal of overlap. That is, within one child you may see many types of cerebral palsy, or the child may exhibit different forms at various times during development.

Except in very severe cases where an obvious injury has occurred (generally around the time of birth) a child may not be diagnosed until six to twenty-four months following birth, as it may be this long before the symptoms become obvious.

Cerebral palsy may develop as the result of an injury to the central nervous system before, during, or after birth.

The primary classifications of cerebral palsy according to the location of involvement and in frequency of occurrence are:

• Quadriplegia: Involvement of both arms and both legs.
• Hemiplegia: Involvement of one side of the body, the arm and leg on either the right or left side.
• Diplegia or Paraplegia: Involvement of both legs.
• Triplegia: Involvement of three extremities, usually both legs and one arm.
• Monoplegia: Involvement of only one limb.

The classifications of cerebral palsy according to syndrome, and in order of frequency are:

SPASTIC

The most common form of cerebral palsy is spastic cerebral palsy. The term “spasticity” refers to the function of individual muscles within the child’s body. When a child with spasticity attempts to move the involved limb, or if someone attempts to stretch an involved muscle, the muscle responds with a strong contraction, or tightening. In that the muscle flexion is centered in the flexor muscles, the opposing extensor muscles often become stretched and lose some of their functional ability. If a limb remains in a state of extreme tightening of the flexor muscle, causing a stretching of the extensor for extended periods of time, a condition develops which is known as a “contracture,” in which the function of the limb is almost completely inhibited.

Spastic involvement of the legs generally results in some degree of “scissoring.”  The spastic muscles of the legs tend to limit knee movement, while the spastic adductor muscles (inner thigh) of the legs draw the legs inward until they actually cross each other.  This motion also tends to rotate the legs inward at the hips, pulling the leg away from the hip socket.  In addition, the flexor within the calf tends to pull the heel up which pushes the toes down and rotates the foot inward.

Spastic involvement of the arms results in some degree of tightening of the flexor muscles, so as to pull the elbows in toward the sides of the body, and the hands and wrists toward the chin. The backs of the hands tend to come together, and the fingers flex into a tight fist. The thumb generally is flexed to such a degree as to draw it against the palm of the hand, with the spastic fingers curled over it.

Associated with the spastic child one often finds an exaggerated startle response to stimulation, inefficient respiration, curvature of the spine (which results from remaining in an upright position without the necessary development of the trunk muscles which would permit the child to support his spine), and failure to develop normal hip sockets because of his difficulty in achieving normal movement of his legs. Various visual problems, such as nystagmus (vibration of the eyes) or strabismus (lack of convergence the eyes’ inability to work together in unison), are also evident. In addition, many spastic children exhibit abnormal electrical activity in their brains with associated seizure activity.  In some cases, spastic children also suffer from some loss of mental ability.

The author would be remiss if he were not to mention the role of orthopedic surgery in the spastic child. Although orthopedic surgery is thought by many to be indicated in some spastic children, particularly for heel cords, hamstrings, adductors, and hips, it is becoming less popular due to the understanding that the spastic child’s problem is his brain and not his muscles, per se, that rehabilitation can often correct such problems without surgery, and that surgery often presents not only a delay to rehabilitative therapy, but a complication often greater than the original problem. For every action, there is a reaction. If the orthopedist cuts a spastic muscle because it is producing an abnormal pull, when the child reaches the developmental age when the cut muscle should be doing its normal job, that developmental movement of the limb will be lost or will be very abnormal. For example, if spastic adductor muscles are cut because they are causing the legs to scissor, their later function of holding the legs directly under the body, when creeping on the hands and knees or walking, will be lost and the legs will tend to spread, causing the child to have difficulties trying to hold the body up straight.

ATHETOSIS

The athetoid child is one of the most perplexing children there is to work with. He is generally an extremely happy child, a delightful, cheerful, optimistic, bright child, whose progress is often extremely slow and difficult.

The athetoid child’s muscles, although a bit hyper (increased) in tone, react in very abnormal fashion, and the harder the child tries to correct an activity the more uncontrolled his movements become The abnormal motor function of the athetoid is in the form of excessive movement and uncontrolled movement. This uncontrolled movement increases with the child’s effort to move with his level of excitement or with environmental stimulation. With excessive stimulation, the athetoid’s body flails rapidly and wildly. With relaxation, the abnormal function decreases, and with sleep, disappears.

The athetoid, upon stimulation, assumes an “extensor thrust” position which is characterized by the arms being rapidly extended outward and back, with the palms of the hands toward the floor and fingers over extended and spread. While the knees come  together, feet turn inward and toes turn up. The neck flexes pulling the head back and to the side and the mouth opens and tongue protrudes.

In addition to the athetoid’s movement, which can be described as irregular, unpredictable, and writhing, his efforts toward mobility are further complicated by an extremely poor sense of balance. The athetoid who has gained the ability to walk often resembles the lurching, balance adjusting movement of someone trying to walk across the deck of a ship being tossed about in a storm. Characteristically, an athetoid’s attempts at such movements as the opening and closing of a hand are accompanied by overflow movements involving all the extremities.

The involvement of the athetoid’s mouth and throat make the activities of eating, drinking, and speaking extremely difficult. As with the spastic, respiration is also irregular and shallow, adding to the overall problem by providing insufficient oxygen to the brain and increasing the chance for respiratory infections.

TREMOR

The child with the form of cerebral palsy known as tremor, is hampered by involuntary movement as is the athetoid, but of a different nature. As the name implies, this child is affected by an almost wave-like shaking that results from an alternate contraction of flexor and extensor muscles.

The tremor in such involved children is greatest in fine rather than gross activity, so that the greater force which the child can exert, the lesser the influence of the tremor.

RIGIDITY

Rigidity is generally associated with severity of involvement. The child with rigidity is characterized by simultaneous and continuous contraction of both extensors and flexors, with greater power being exerted by the extensors, resulting in a general lack of movement as opposed to inappropriate or involuntary movement. The limbs of the child with rigidity are virtually locked in full or over-extension, resulting in an arched position with the back stiff and head and feet at the extremes of the arch.

The child with rigidity such that permits some controlled movement of an extremity has the further complication of involuntary movement of the opposite extremity (movement of the right arm results in a similar movement of the left).

Various associated complications are generally seen with these children ranging from severe respiratory problems to diminished vision and hearing, as well as seizure disorder.

FLACCIDITY, ATONIA, ATAXIA

Flaccidity and Atonia are fortunately relatively rare. They are difficult to treat and must be differentiated from conditions of the muscle such as some forms of muscular dystrophy. Ataxia is a condition characterized by loss of balance and poor coordination.  Such a child may have normal muscle strength and tone, but because the balance factors are inadequate, attempts at walking are difficult, dangerous, or most often, impossible.  Such children have difficulty gauging the amount of movement they are making with an extremity and may miss their intended amount of movement by overextending or underextending the part.

CAUSE

Children diagnosed as having cerebral palsy are children who have brain injury.  Injuries to their brains that have occurred before, during, or after birth. The injury to the brain indirectly is the cause of the lack of function within the children. The direct cause of the dysfunction is the dysorganization of the brain which is itself caused by the brain injury. The location and size of injury determines the degree to which the injury produces dysorganization.

Injury to the brain may result from a variety of causes. Prenatal injuries may be caused by maternal infections, trauma, metabolic disturbance, Rh incompatibility, malnutrition, hemorrhage, or anoxia (lack of oxygen). Injuries caused during the birth process include anoxia, hemorrhage, mechanical injury, or problems associated with pre or post mature deliveries. Following birth, injury to the brain can be caused by infections, trauma, toxic substances, or anoxia. Although those causes listed are but some of the possible causes of an injury to the child’s brain, they represent the major causes. Often the exact time or even cause of the injury is unknown, and in that the time or cause has very little influence upon treatment, it is best if the family does not pursue the issue if the specifics are not readily available.

STARTING POINT

The time and cause of the injury to the brain are of limited significance. The cause of the dysorganization to the brain is not, however. A diagnosis of cerebral palsy is a symptomatic diagnosis which indicates brain injury. A working diagnosis however, is indicated, a diagnosis based upon neurological studies which locate the injury, and which either eliminate the possibility of a progressive disorder or indicate a course of medical treatment or intervention.

TREATMENT

All cerebral palsied children are brain injured; however, all brain injured children are not cerebral palsied. The injury to the brain which results in the symptoms which lead to a label of cerebral palsy is associated with injury to the motor centers of the brain. The location of the injury determines the form of the dysorganization, and thus, the particular loss of function.

Children with brain injury and resulting loss of motor function often go undiagnosed until many months following birth. Although the injury occurred at the time of birth, the problem often does not manifest itself until the child is functioning at the level of the injury. For example, a child with a mid-brain injury would not necessarily have abnormal function until such time as he has developmentally reached that level. With the child labeled as being cerebral palsied, as with every other child lacking function because of neurological dysorganization, treatment is directed toward organizing the brain (stimulating the growth of brain connections) .

Brain cells that have died are not replaced. Neither are injured cells repaired.  Through stimulation new connections grow between the healthy cells permitting those healthy parts of the brain to carry out the function of the injured or dead cells. The more connections between the brain cell bodies, the more efficient the system.  The more efficient the system, the higher the level of function.

Cerebral palsy is a symptomatic diagnosis which does not identify the problem.  Symptomatic treatment attempts to lessen the symptoms, not reach the cause. The problem with a spastic arm

is a problem with the brain. The problem with a rigid leg is a problem with the brain.  Symptomatic treatment aimed solely at the limbs does not treat the cause of the problem – the brain!

Neurological organization is an ongoing process which can be accelerated by increasing the frequency, intensity, and duration of appropriate stimuli. Appropriate stimuli causes the growth of connections and a corresponding increase in function.

PROGNOSIS

The outlook for brain-injured children with a symptomatic diagnosis is not good. These children are generally treated symptomatically. Historically, as a result of inappropriate treatment, these children have failed to show significant improvement. There is no such disease as cerebral palsy. You can’t catch it. If you have it, you can’t give it to anyone else, neither can you get a “shot” that will make it go away. But because historically, children with this fictitious disease have failed, this fictitious disease is now viewed as an incurable disease. Viewed as incurable, these unfortunate children are often denied a real opportunity to improve.

Improvement in children with motor problems is often slow and difficult. There are very few  “miracles.” But given the opportunity (an hour of therapy twice a week is NOT an opportunity), virtually all of these children can improve, and some can achieve “normal” function.

Opportunity for these children involves intensive treatment. Treatment which, because of it’s very intensity, requires the family’s involvement. Many hours per day are needed. Not per week, per day! Hours of specific stimulation. Stimulation which treats the cause, not the symptom. The problem – as well as the answer lies within the BRAIN.

The NACD Foundation is fortunate in being able to assist families of brain injured children in their efforts to help their children achieve their potential through individual evaluations, programming, parent education, and research.

Reprinted by permission of The NACD Foundation (formerly The National Academy for Child Development), Volume 1 No. 2, 1980 ©NACD

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When I last wrote about Justin, he was thirteen and going into seventh grade in middle school. (*See link below.) He still mostly used a wheelchair, required a one-on-one aide at school, his vision was quite limited, and unless I used a huge marker board to help him with homework, reading independently was impossible. But even considering these issues, with our NACD program he had achieved far more than others had expected from a child diagnosed with cerebral palsy. At age 4 Justin had had a surgical procedure called a selective dorsal rhizotomy (not at NACD’s recommendation) and lost the muscle tone and strength we had worked so hard to improve, which was a huge emotional blow to Justin’s confidence. The rhizotomy was the “in” surgery in the late 1980s, but the results for Justin were disastrous. Immediately following the surgery, Justin’s legs felt like marshmallows. Sure the spasticity was gone, but so was the good muscle development. And worse yet, I took Justin to the therapist for the follow up treatment where she stretched his legs, and in less than 24 hours I watched the spasticity begin to return. I was devastated and so guilt-ridden that I had made things worse. Yet even with this serious setback, by middle school, with the help of his NACD program, Justin had progressed beyond anything anyone had said he would, and I was hopeful the trend would continue. We worked with Bob and NACD for several more years and eventually decided to discontinue formal evaluations.

My husband Bill, who had adopted Justin after our marriage, really thought I was not being realistic about Justin’s potential. It seemed to him that I needed to appreciate the gains Justin had made and move on. This is not to blame him, but to acknowledge that working an intensive program requires a strong support system. My solution was to do everything I could afford that might help Justin, without spending the number of hours each day true recovery required, in hopes that Justin would make some gains anyway. He had personal trainers for several years, which provided a great social outlet—Justin has always been a sports fan—so working out in a gym was perfect. Justin had fun and that helped me. I wasted other time and money, always in hopes of helping Justin. The unfortunate reality is that there are so many useless therapies out there; and those of us with hurt children will try most anything.

We tried hyperbaric oxygen therapy and neurofeedback—neither was cheap—and neither improved Justin’s function enough to justify either the expense or time spent. Both made him calmer for a brief time. What I always believed was that since Justin was still just a young man, somehow I would get him to where he belonged. And the only person I knew who understood this was Bob. I kept this inside in hopes that someday something would happen to allow us to return to NACD.

During his senior year in high school, Justin began working with a personal trainer who was a cyclist. He believed Justin could ride a hand cycle and participate in the upcoming El Tour de Tucson bicycle race. However, Justin did not need a hand cycle. With shoes bolted to the pedals, he rode a recumbent himself, and his trainer ended up riding the hand cycle Justin had been given. It took them 5.5 hours to do the 35 mile length of the race, the shortest leg you could do. (Justin later donated the hand cycle to a young man who had a spinal cord injury.) In addition, Justin was honored as the inspirational cyclist of the year and an article about him was published in the local newspaper. As a result, we received a call from a woman who was part of a National Science Foundation grant studying the efficacy of Reiki on children with cerebral palsy. She invited Justin to the clinic where she volunteered. It turned out Justin was much more functional than the children in the study, so she offered to teach Reiki to Bill and Justin so they could begin to volunteer too.

After high school, Justin enrolled in a community college, earned an Associate Degree in General Studies, and began volunteering in several clinics, which allowed him to gain a different perspective on life.

A couple of years ago, Bill and Justin’s volunteering led them to a clinic in Mexico that used neurodevelopmental work in treating hurt children. This led Bill to see the difference NACD can make in the lives of those children. He asked me to contact Bob. One thing we knew—Justin’s dream to drive and read had never gone away, and he wanted to drive without having to load a wheelchair into the vehicle. We thought Bob would be just the man to help.
Justin was 29 years old when he saw Bob in October 2012. The bond between these two and the plasticity of a 30-year-old brain has been amazing to see:

Vision

Justin was 18 months old when I took him to NACD for the first time. He was cortically blind, with pupils barely responding to light. Although Justin had made very significant progress with his vision with his NACD program, when we returned Bob told Justin that if he wanted to drive his vision would have to significantly improve and the first step would be to see well enough to read comfortably. This terrified me. Justin went through all his education never reading a book. I had no idea how to make this happen. But resuming NACD program jumpstarted Justin’s vision progress again. With Bob’s recommendation, we purchased a Kindle Paperwhite touch screen e-reader—a game changer—which allowed Justin to read much more easily due to its no glare feature. In October 2012, Justin read two-inch-tall print and had never read a book on his own; a year later he is reading regular 12-point font. Now Justin actually reads because he loves it. I cannot overstate what it is like for me to come into my home office and see Justin reading. Right now he is reading a book by David Kessler, former head of the FDA, about how the food industry manipulates sugar, salt, and fat to keep people wanting more.

When Justin was little his left eye turned in, and with the implementation of the NACD vision exercises, by the time he was thirteen the strabismus had significantly reduced, yet was still noticeable. Now, after a year on program, the strabismus is almost completely gone. This is so amazing! When he was a baby, I remember being told he had optic nerve hypoplasia. I looked it up, only to find out he would probably never see.
For the last several years, Justin and his dad have been training for and participating in the annual Tucson bike race, riding a recumbent tandem together. Bob reminded Justin that if he was sitting in the back of the bike he wasn’t using his eyes to see where they were going. Now, Justin rides 5 miles on an individual recumbent bike and is perfectly aligned with the winding, hilly road. I was terrified at first… he was all over the road! Now, he is just a regular rider, steady and parallel to the side of the road. Bob was right: using his eyes is improving his vision. Although he is no longer a child, Justin’s brain is still learning and changing.

Tactility

Not too long ago it looked as if Justin was beating the dog when he was just trying to pet her. Now, he has normal tactility—and the dog is much happier, even standing next to Justin at his desk so he will pet her. With better tactility Justin can put clogs on, can almost put regular loafers on and off on his own, and is working on fastening buttons. He folds laundry and helps with dinner preparation. He loves making salads—takes great pride in this—and has figured out how to cut food by laying the fork on its side. He is working on cutting with a knife. I have no doubt he will be there soon. The truth is, I believe he will be able to do all these things, just like any other adult.

Physical Progress

Although he still occasionally uses a wheelchair in busy public places, Justin now walks most of the time. His gait is smooth, fast, and unbelievable to see. A year ago he couldn’t navigate stairs; now he goes up and down while keeping one hand on the railing for support. He continues to work out and doesn’t look at all like he was ever diagnosed with CP. He is so strong and buff that strangers often wonder why he is sitting in a wheelchair. We have been in the mall several times when people asked if he was a veteran, assuming the wheelchair is a recent event.

Cognitive Progress

When Justin was first diagnosed with CP, he was labeled mentally retarded. He is so far away from that now! In fact, his auditory sequential processing is at 9-10, reverse auditory 8-9, and visually he processes at 10, which is significantly higher than the ability of the average typical adult. More importantly, Justin is still progressing: just in the last three months, he has gained a year and a half in reading comprehension. Having an increased cognitive ability is having another positive impact as well. Until six months ago Justin had no good way of expressing frustration. He used to lash out physically when he became too frustrated. Because his tactility was low, he could easily bruise my arm just by grabbing it. He also had emotional meltdowns. Life was so frustrating that from time to time he would break down sobbing. Here was my son—the best gift I ever got— I sobbed with him with a broken heart. Now, he has the cognitive tools to express his irritation in a healthy, productive manner. He can calmly and rationally work through a problem and come up with reasonable solutions.

Social Growth

Children who grow up “hurt” do not have normal social lives. They grow up knowing they are different, and not in a good way. Adults cater to and patronize them, making it difficult for them to learn how to reach out and give to others. But inside they dream of being normal and being able to do what their classmates do. That was Justin—a social misfit. Justin was just one of those unfortunate handicapped kids. Born that way. That was his lot in life—not much empathizing from people outside of our immediate family. Most people just hoped it wasn’t “catching.”
Justin now behaves like most “normal” people. He is no longer that social misfit—just a tad off center—if you know what I mean. Now that Justin can do most things ‘normal’ people do, he enjoys the company of several close friends, including a girl friend with whom he chats in Spanish on Facebook. A friendship at Justin’s age is different from when he was younger. His friends have families, jobs, and responsibilities, but they still make time for Justin. They run errands together, go out for coffee, and bond over sporting events. Justin is also keeping busy with volunteering at two different clinics a few times a month. He is a skillful Reiki master, who brings comfort and healing to others, and at the same time gets to experience healing himself.

Dreams Becoming Reality

When we visited with Bob recently, Justin mentioned again that he would really like to drive. Not realizing just what that would do for Justin—or maybe precisely because he did—Bob took Justin out to the NACD parking lot and invited Justin to sit in the driver’s seat of his prized, classic red Jaguar convertible. Then, very carefully, very patiently, Bob taught Justin how to start the car, apply gas and brake, then guided Justin into putting the car into gear and slowly backing out and into the parking spot. The look on Justin’s face was priceless. Having tasted a bit of how it feels to drive, Justin is determined to keep on working the program—with Bob’s loving, patient guidance—to make the dream of driving a reality.
Since starting program anew a year ago, Justin has become a changed human being. One year ago, Justin’s idea of conversation was asking questions. And to make it even more awkward, he would first ask permission to ask a question, essentially asking two questions each time. Despite the fact that he is my son, for whom I am so grateful, this was difficult to handle for more than a few minutes at a time. Contrast that with our conversation yesterday when we talked about the current book he is reading. Or consider that a couple of days ago this former game show junkie was completely engaged in a news conference that interrupted “The Price is Right”—the show he watches with pinhole glasses. He could not have handled that interruption even six months ago. Six months ago, he could not tell you what he thought about something—he needed you to tell him why something was. No more. He can begin a sentence with “I think that…,”“I wonder if…,” or “Did you know that…?” The amazing changes we’ve seen in him over the last twelve months have proven that even a mature brain can continue to create new connections. Outside the world of neurodevelopment that NACD has opened up for us, some people may think that we are imagining things, that we are fooling ourselves, but that’s okay. They don’t understand what’s possible. The truth is, while doing his NACD program Justin’s vision hasimproved dramatically in the last year and he is reading a lot and loving it. His fine and gross motor functions have greatly increased and walking and driving a car are viable expectations now. Most importantly, Justin knows that it is never too late to grow, and change, and improve. That’s the real difference—Justin knows!
Last week a co-worker asked me if I thought Justin would ever live on his own. It was easy to say “of course.” The truth is, I always believed that Justin would end up with a great life. I’ve known Bob since Justin was 18 months old. It took me awhile to get Justin back to him, but this time my husband is not simply okay with it, he helps Justin with program too. Justin’s gains are happening because we are back where we belong—with NACD—and the support system is strong. Never in my life could I have imagined the pain of my only son being born severely brain damaged. Even with that, I was always so grateful he was mine. That has never changed.

And the reason I can tell our story is because of Bob. We are truly fortunate.

Recent update from Justin’s mom:

Despite graduating from high school in the National Honor Society and completing an Associate’s Degree, at nearly 30 years of age, Justin had never read a single book. I rationalized his loss by telling myself that he was an auditory learner with poor vision that prevented him from reading. While Justin did not seem to be bothered by the fact that he could not read, he continued to dream of driving—what guy doesn’t?
I knew of only one person who could give him that chance. After an evaluation from Bob in October of 2012, we began program once again. Bob insisted Justin would need to learn to read independently if he ever wanted to drive a car. Terrified of being disappointed, we followed the program Bob wrote and bought a Kindle Paperwhite. Bob also insisted Justin not simply read books of his choice, but rotate his choices with classical literature. And just like that, Justin began reading independently.

In truth, I was thrilled he was reading at a 7.5 reading level six months later. Three months after that, however, he had only gained another 3 months growth. This is when Bob said that Justin needed to really hit the working memory activities in Simply Smarter. Justin did the reverse auditory activity multiple times a day for the next few weeks. Three months later his reverse auditory span was 5 and his reading comprehension level jumped 1.4 years. So he continued focusing on two activities–reverse auditory and alphanumeric. Six months after that, his working memory had nearly doubled and he gained 2.2 years in reading comprehension.The table below tells the entire story.

Eighteen months ago, Justin had never read a single book.Today he can read anything that interests him. The change in Justin from increased working memory is not limited to reading. He is aware of and interested in the world around him. For the first time in his life, he has current knowledge about the world we live in. He enjoys comedy. And he loves reading. We call him a reading maniac! At age 31, he is a new person. Most important of all—he is hopeful about his future and believes he will drive one day.

Please see previous article: Cerebral Palsy: “Justin”

NACD Newsletter, Volume 7 Issue 3, 2014 ©NACD

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When Michael and Mark were born 3 1/2 months prematurely, no one expected they would live through the day*. But they were fighters, and despite several setbacks they came home from the hospital at 3 months old, which was 3 weeks before their due date. Yet, I soon began noticing developmental delays; and when the boys were 15-months-old, they were diagnosed with Cerebral Palsy (CP). Michael, the doctors told me, would probably have learning disabilities, and Mark would fare far worse—the best that could be anticipated for him would be learning disabilities, but most likely he would be “mentally retarded,” and neither of them would ever walk.

Soon after the diagnosis, we began traditional therapy and the boys made some progress. However, despite the good intentions of those who worked with my children, I could tell that only the symptoms of CP were being treated, not the brain injury itself. As a nurse, I knew that if my little boys were to have a chance at a normal life, the root of the problem needed to be addressed. The NACD did exactly that.

The boys were three years old when we began the NACD program. Deficits in sensory abilities are common in CP, and our boys were no exception. Neither one could feel things normally—they had limited feeling in some areas and hypersensitivity in others. They were also hypersensitive to sound, and loud noise and music caused them a great discomfort; they would cover their ears and cringe. So their individualized programs included targeted neurodevelopmental and sensory-motor activities which helped stimulate the development of new neural pathways.

Initially, the boys’ sensory dysfunction was such that they had difficulty tolerating some of the activities; but with time they adjusted to the various forms of tactile stimulation and later even began asking for it. Eventually, Mark and Michael acquired a much more normal awareness and feeling. An example of this development is the “case of the eyelash.” One day I noticed an eyelash in Mark’s eye. It was black against white, but his eye never registered it as a foreign object. Then, several years later, Mark came in from outside rubbing his eye, his eye all red, asking me to get this “thing” out of his eye. I never did find the “thing,” as I’m sure he flushed it out with tears, but I was thrilled! His brain was finally properly processing foreign objects in his eyes.

The doctors and therapists had told us that the boys would never walk and wanted them to use wheelchairs; but knowing that unused muscles atrophy, we refused the wheelchairs and worked on preparing their brains for walking. Mark was already crawling when we saw Bob, but Michael wasn’t. We began teaching the boys to crawl in a serialized pattern, and later did cross patterned walk, over and over again, with an overhead ladder. When Mark took his first independent steps across the room, I screamed with joy so loudly that I scared him!

I am the first to say that this has not been an easy road. We worked on the NACD program with Michael and Mark and home-schooled all four of our boys. John was a year older and Tim was four years younger. Although our friends and relatives were generally supportive, some urged us to put the children in public school in order to get free therapy so that I wouldn’t have to work so hard. When the boys were in third grade we did just that for the purpose of me “getting a break.” I quickly realized that our goals for the boys were different than the school’s. For example, the goal of Michael’s physical therapy at the school was for him to get in and out of the wheelchair and safely maneuver through doors, not to build him up to walk. We ended up pulling the boys out of school within two months because the experience was so negative. Yet, it was an invaluable training for me. I witnessed firsthand that just because something is free does not mean that it is good. Truth was I could do more brain changing and capacity building at home in one day than the school could do in more than a week. I also saw that the school’s philosophy was to create an environment in which my children could function; but the NACD offered to change my boys and teach them how to function in any environment.

And the boys changed. Even though they had identical diagnoses, their NACD programs were very distinct and highly individualized. Each program piece—processing, academic, and physical—worked together toward increased brain capacity. At times Mark and Michael made huge progress in short periods, and other times they seemed to make no improvement at all. But as we persevered over the years we continued to see constant growth and significant brain change that went above and beyond what anyone ever expected. Now, at 23, they are accomplishing amazing things.

At home Michael can now walk independently, but still needs a walker outside of the house. He is finishing the requirements for a high school diploma through an online program and is earning excellent grades in his classes while doing all work entirely on his own, except for some tutoring in math and typing in English.
Mark has been walking without assistance since he was seven. He obtained his GED and then graduated from a local technical school with a certificate in Digital Audio Production and earned a 4.0. Currently, he is finishing an associate’s degree in general studies at Valencia College and in the fall will be transferring to the University of Central Florida to complete a bachelor’s degree. The only accommodation Mark has in college is that he is given an extra half hour during tests because it takes him longer to write his answers, and he sits in the front of the class. Even though as an infant he was diagnosed with Retinopathy of Prematurity and was considered legally blind in one eye, his vision has continued to improve throughout his life on program, and he now reads and functions very well. Mark comments that his NACD visual activities have paid off and that his vision is still improving.

Both young men are incredibly independent, and thanks to their years of NACD cognitive activities, they can reason through complex problems and situations. Their high processing abilities (Michael’s auditory digit span is 10-11 and Mark’s is 11-12) have even helped overcome some of their physical weaknesses—it is easier to remember a lecture, for example, than to take notes in class. Michael and Mark also have goals for the future which include living on their own and having careers. Several years ago, they had a taste of living without mom and dad. Because they can cook and clean and have been doing their own laundry since they were twelve, spending six weeks alone at home wasn’t a problem. Mark is training to be a sports broadcaster, and Michael wants to design video games without violence, sexual content, and objectionable language.

Working with the NACD has definitely been a great choice for our family. The NACD has empowered us as parents with skills, knowledge, and resources to help Michael and Mark achieve far more than what was expected of them because of their diagnosis. Our experience with the NACD has not only assisted us with our sons, but with our international missionary work as well. We have been able to use NACD’s processing activities and Simply Smarter program to help children and adults all over the world. We thank our Lord Jesus for Bob and his team for the major part they have played in our lives!

*For a detailed account of the beginning of our NACD journey, please click here.

Reprinted by permission of The NACD Foundation, Volume 26 No. 2, 2013 ©NACD

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I remember so clearly the first time someone said that Justin had cerebral palsy. It was over the phone, not even to my face. She said, Don’t be upset, Mrs. Johnson, your son has cerebral palsy. When he was six-months-old, I read an article in a women’s magazine which described a child whose abilities, or lack there of, matched Justin’s perfectly. I knew what it was, but every time I said the words out loud, those around me became very uncomfortable, so I, like them, tried to deny what I knew to be true. Now, after ten months of begging for answers, I was given the diagnosis, the dreaded words, the life sentence. It was the most excruciating pain I have ever felt in my life, and I believe that nothing else will ever hurt me as much as those two words. So I threw up for two days.

So I did next what I believe everyone does. I took Justin back to my pediatrician, and told her what the neurologist had said. Her casual reaction to this diagnosis was unbelievable, as she calmly explained to me that cerebral palsy is a general term used for many things, and that I shouldn’t worry too much about it. Now, at that time, I was no expert, but I do remember replying to her that, while those words may not mean much to her, I was well aware that it meant that Justin had damage to the motor areas of the brain. By this time, I knew that any doctor who was either unable or unwilling to spot severe brain damage in my son was to be of no use to me in his recovery, so I left and never returned.

So, I did what the neurologist suggested: I began taking Justin to physical therapy twice a week. Each time, I watched the therapist manipulate Justin in the center of an open room, trying to get him to stand up, drape his body over a large plastic ball and tickle him so that he might do sit-ups off the ball, and other maneuvers which made little sense to me. All of this occurred with a child who was incapable of lifting his head. Anyway, I watched like a hawk, searching for that change in Justin which would validate the success of the therapy. It never came. During one visit to this therapist, I mentioned to her that Justin’s eyes rolled around in his head from time to time, and she commented that it would be interesting to find out what was causing that. Another time, she told my mother that if Justin ever walked at all, which she did not anticipate, it would only be with a walker. I was livid. All this time, I thought her goals were the same as mine; I was looking for the total cure, and realized that she never even considered that as an option. This therapist obviously had no answers for Justin; it was up to me.

I began researching. First, I scoured bookstores, buying any book which even contained a single mention of cerebral palsy. Then luck intervened. I met a mother who knew of NACD. She told me that Bob Doman came to Scottsdale every three months to evaluate children. I got an appointment that day. I told Justin’s therapist of my plans, and she told me that I was not accepting the reality of the situation, that this program would ruin my son. To this day, I believe that nothing is more damaging to an individual than prolonged lack of oxygen, and that her prognosis was not the ultimate truth. In fact, she was not accepting the reality very gracefully. So, Justin and I left.

Justin was 18-months-old when I took him to Bob Doman for the first time. He was cortically blind, with pupils barely responding to light, was unable to hold up his own head, and was so stiff that he used his right hand and arm to propel his body in order to roll from front to back, his only movement. And, he was unable to talk. However, he was beautiful, blond-haired with green eyes, had a contagious smile, and was so delightful to be with. I was happy he belonged to me. From the first evaluation on, Bob treated both Justin and me with courtesy and respect. He made no promises, only explained what helped based on his experiences, and how to do it. Justin’s first program took eight hours each day to complete, included vision therapy, physical therapy, patterning, taste and smell experiences, and much more I have by now forgotten. Fortunately, my family helped, as my husband had left right after Justin’s birth.

Two weeks after starting the program, I thought I was hallucinating, when, I saw Justin creep across the mattress of his crib. And then he did it again! That was the second most memorable day of my life.

At this time, I was involved in a malpractice suit, which resulted in other examinations for the purpose of the litigation. During one of these meetings, I was informed that my son was not only physically challenged, but mentally as well. This made little sense to me, as I knew he understood me, but the pain was once again immense. The next specialist explained to me that Justin was deaf. I knew this was wrong, because he was able to hear me tip toe on the carpeting when I checked on him in his crib. Fortunately, the next time we visited Bob, I mentioned these conditions, and Bob explained that Justin was, in fact, not deaf or mentally retarded. His hearing was hyperacute, which meant that Justin could hear the garage door down the street close. He also had above normal intelligence.

At this time, Justin is 13 years old and is going into the seventh grade in three weeks at the local middle school. Although he is one grade behind his chronological peers, he has had less years of schooling than they, having entered public school at age eight, he never attended kindergarten, first, or second grade. Justin is in the National Junior Honor Society, sings in the chorus, loves computers, and is a total sports nut. He is getting close to independent walking, and wants to play some sport in high school. At this time, I have no reason to doubt that possibility. He still does some vision therapy, although he reads quite well, there are some minor convergence issues to complete. He also has some fine motor skills to work on. Four days each week, Justin works out at the local gym with a personal trainer and former competitive bodybuilder (named Tom Martinelli) and loves pumping iron. He is very social and confident of himself and his future. I will never be able to thank Bob enough for what he has done and continues to do for Justin. In return, I try to share with parents who have children like Justin the notion that the prognosis for children with a diagnosis like cerebral palsy is what we as parents make it. All our children need is the opportunity for a normal life. That’s what Justin got from Bob: the opportunity. What I want for Justin is no different now than it was before he was born: the chance to be whatever he wants to be.

Because of Bob, Justin is getting that chance. I used to begin my explanation of Justin’s condition with the following quote. “Imagine that your child has just been diagnosed with a condition for which there is no cure and no one is looking.” That’s what it’s like in the world of conventional therapy. Bob Doman, however, is looking. That’s why he is different, and that’s why I continue to take Justin to him.

Reprinted by permission of The NACD Foundation, Volume 10 No. 11, 1996 ©NACD

Click here for an update on Justin.

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Our story begins on January 4, 1990, when I delivered two beautiful boys, 3 months premature. At birth, Michael and Mark weighed 1 pound, 12 ounces, and 1 pound, 12 ounces, respectively. The boys were given a 10-15% chance of survival. Michael and Mark are now five years old. They also have a six-year-old brother, Johnny, and a 15-month-old brother, Timothy.

During their first weeks of life, Michael and Mark surpassed all the statistical norms for preemies. They made incredible strides despite a series of setbacks. One was Mark’s lung problem. The doctors expected him to die but within three days, God miraculously healed him. Another setback was an eye problem for Mark that had the potential of causing total blindness. He underwent a special procedure that solved the problem.

The boys came home from the hospital when they were three months old, three weeks before their due date. This was unheard of and we rejoiced, but reality set in all too soon. We were exhausted trying to care for the twins and their 20-month-old brother. Yet the boys were remarkably healthy. In fact, when I questioned our doctors about the boys’ developmental delays, they always encouraged me with, “Give them time. They’re 25 week babies and they’re SO healthy.” Besides, there were no other children like them to make a comparison. Normally twenty-five-weekers don’t live.

At 14 months, I noticed that Michael seemed more stiff than a normal baby. At their 15 month appointment, I mentioned it to the doctor and after taking a closer look, he diagnosed both boys with cerebral palsy. CP is a form of brain injury caused by oxygen deprivation. It affects motor skills: gross motor such as walking, fine motor such as hand coordination, and speech motor such as articulation.

The doctors encouraged us saying that the boys probably had a mild form of CP since it had not been detected earlier. What they didn’t explain was that if the boys didn’t make progress, then what now seemed minor at 15 months, would become major at 3 years. Plus, the rest of the prognosis was grim. Michael would probably have learning disabilities and the best we could hope for in Mark would be learning disabilities. He would probably be mentally retarded. (Since then it has become obvious that if anything, they are both above average. But at the time, it was a hard pill to swallow.) After we came around, all we could think was, “Just tell me what our next step is. What can we do to help these little guys?”

We began with physical and occupational therapists coming to our home once a week. This lasted for a while and then we moved to Orlando. Here, we tapped into some resources that provided physical, occupational, and speech therapy. The boys made some progress.

A few months later the physical therapist wanted to cast Michael’s legs to prevent contractions in his ankles. He was just at the point that he could get up on all fours. He wouldn’t be able to do this with the casts. We asked a lot of questions. The physical therapist said that casting was the only help she could offer.

At this time, a friend started telling us about “treating the problem rather than dealing with the symptoms.” This really made sense to me, especially with my nursing background. Then the physical therapist insisted that we agree to wheelchairs for the boys to transport them to a school setting. With the advice and support of some other health professionals, we refused the casting and the wheelchairs. This would not only have discouraged the boys emotionally but it would have been physically detrimental as well.

About that time Doug and I took a week-long course for parents of brain-injured children. It offered methods and a commitment to target the problem, not the symptoms. We came home with some excellent information, much-needed affirmation for our beliefs and some great ideas to implement a program. However, the program was rigid, calling for daily therapy that would encompass the entire day. Again we wondered, “What about Sunday, our day of rest? What about Johnny? What about our family time? What about time to just be a mother to these boys? How could we emotionally survive?” We just couldn’t agree to the entire program. We couldn’t “live and breathe” therapy every waking moment. This wasn’t acceptable to the directors of the program. They said that if we wouldn’t commit ourselves to their entire regimen, they wouldn’t work with us. We mutually agreed to go our separate ways.

Soon after, as we struggled to implement bits and pieces from the program on our own, we met Bob Doman. We soon realized we had found the combination of treatment and philosophy we had been searching for. Bob’s goals seemed like our own:

• Help each individual child to go as far as he possibly can
• Treat the source (the brain), not the symptoms
• Work on specific tasks for specific gains
• Let families work within their own framework of priorities

What a relief to us! Finally, we had met someone who believed in us as parents and the strategic role we play in helping our children to achieve all that God has created them to be. Finally, a professional agreed that we could customize a program to meet the needs of our entire family. Finally, a professional was going to respect us as parents with God-given wisdom and offer us all the help he could in that role.

We began to implement Bob’s program in May of 1993. Two weeks later, I found out I was pregnant. Two weeks after that we went to Colorado for two months. We returned at the end of July and I was placed on bed rest for the remainder of my pregnancy. At 29 weeks, I was admitted to the hospital due to premature labor and remained there until Timothy was born six weeks later, as a healthy baby only five weeks early. I tell you all this so that you will see the less-than-perfect context in which we began Bob’s program.

When we began, we worked anywhere from 30 to 90 minutes per child, four to five days a week. Hearing this, you might expect less-than-astounding results but I am here to tell you that the progress we have seen in our boys is nothing short of amazing. At the time we first started with Bob, Michael could get up on all fours and move his left knee slightly forward. He still had a long way to go before he would crawl. His vocabulary was great, thanks to a very talkative family. However, his articulation was poor. Part of the problem was that he took a deep breath after every word. Today, after less than two years under Bob’s direction, Michael can pull himself to a standing position against furniture and can crawl onto the couch. He can “stand” steadily on his knees and can walk the full length of our house on his knees. His balance is so good that he can even carry toys with him as he walks this way. He also loves basketball and can shoot hoops quite effectively from his knee-standing position. He has aintained and expanded his good vocabulary while improving greatly in the area of articulation.

Mark began Bob’s program at about the point where Michael is today. He could pull up to furniture and was starting to take supported steps. However, he locked his knees with every step. Unlike Michael, Mark was unable to walk on his knees. His speech was marked by excessive stuttering and his vision was 20/200. He was plagued by double vision and was unable to make his eyes work together. Today, Mark walks independently without locking his knees. His gait is improving steadily. He can take one step up and one step down unsupported and is able to do a “true run.” His speech has improved and his stuttering has disappeared. His vision is now 20/80 in his “bad eye” and 20/30 in his good eye. He is also in the beginning stages of having his eyes focus together for the first time. Obviously, Bob’s program is working for us. We believe that part of our success is due to the freedom Bob has given us to implement his program within the context of our family-first priorities.

With the incredible gains we’ve seen, we are extremely encouraged. But our story isn’t over yet and at this rate, we see the boys achieving far more than the doctors ever predicted. We see them walking, running, reading, taking responsibility for themselves and others, and having a positive influence in their community and their world.

Why am I telling you all of this? There are several reasons. First of all, I want to encourage you. When Michael and Mark were diagnosed with CP, I longed for a “mentor,” another mother who could help me maneuver in these unfamiliar waters. I wanted someone to show me, as their mother, my next step in helping my boys. One of my friends was particularly helpful and I want to share her kernel of wisdom. It goes like this:

“When you’re overloaded, cut things in half. Keep cutting them in half until you can handle them. Never quit. You can always build up again once you’ve got your bearings. Never quit.”

The other reason I want to share our story is that I truly believe that God has blessed our efforts in a miraculous way. Regardless of your religious upbringing, you have probably heard the story of Jesus feeding the 5,000. In this story, Jesus blessed a boy’s lunch of 5 loaves and 2 small fish so that He could feed the people. After all 5,000 people were fed, there were 12 baskets of leftovers. I remind you of that story because I believe God still works this way today. I can’t do everything, but what I can do, I commit to Him. He blesses it and multiplies it. He surely has done this for my family and I believe He can do it for yours too.

Reprinted by permission of The NACD Foundation, Volume 10 No. 11, 1996 ©NACD

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NACD’s developmental and educational programs are designed to lead each child toward developing his/her fullest potential. These programs are designed through the expertise of Robert J. Doman, Jr., and represent an eclectic approach to child development. These programs are implemented by the parents and other family members under the training and auspices of The NACD Foundation.

The philosophy behind these programs is based upon the acceptance of the concepts of the plasticity and redundancy of the Central Nervous System, as well as the branching effect of the system which can be produced through specific stimulation. It is further believed that:

• Function provides a mirror from which the level of development may be evaluated, and
• The development of the system follows an orderly sequence.

It is possible to determine the individual’s level of function as it relates to his/her overall development. An individual’s function is measured in the receptive areas of visual, auditory, and tactile competence, and in the expressive areas of mobility, language, and manual competence. With this information it is then possible to design a treatment and/or acceleration program which provides specific stimulation to those levels which require further organization.

The goal of such a program is to permit the individual to progress towards organized function and to lessen any degree of dysfunction so that his highest functional potential may be realized. Development of and movement through dysfunctional and neurologically dysorganized levels of the Central Nervous System is achieved through the application of appropriate stimuli which is delivered with sufficient frequency, intensity, and duration.

The evaluation and consequent programming consist of the following:

PHASE ONE

• Review of developmental, medical, educational, and social history.
• Functional developmental evaluation in the receptive areas of visual, auditory and tactile competence, and in the expressive areas of language, mobility, and manual competence.
• Assessment of educational function, utilizing standardized individualized achievement tests where indicated.
• Evaluation of social-behavioral function.

PHASE TWO

Design of an individual program which includes:

• Neurological development
• Perceptual training
• Educational training and development
• Social development
• Behavioral management

PHASE THREE

• Training of the parents in the implementation of the individual program.

Children with special problems have special needs. These needs are rarely met, and these children are almost universally denied the opportunity to reach their potentials. Traditional approaches to these problems lack the necessary direction, specificity, and intensity that are needed for these children with special problems. NACD’s philosophy implies a continuum of function ranging from a low of coma, to a high of genius. All children are on this continuum. Most, given the opportunity, have the potential to improve. Children included within these programs come to us with a variety of labels, including brain injury, cerebral palsy, mental retardation, Down Syndrome, autism, learning disorder, hyperactivity, etc.

Neither Robert J. Doman, Jr., nor his associates are licensed to practice medicine. The design of individual developmental programs is based upon experience and represent suggestions to the family. Each family is encouraged to make its own decisions regarding which specific program techniques and methodologies it wishes to utilize for the children. If medical or other licensed professional advice is needed, please consult a licensed physician or other licensed professional.

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

Reprinted by permission of The NACD Foundation, Volume 10 No. 5, 1996 ©NACD

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