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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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One of the aspects that I love about working with NACD is meeting and working with so many amazing families. Being a “program-doing-mom” in this role, has also added many other unexpected benefits, some of which would be, being inspired by, challenged by and motivated by our wonderful parents and their children. We really do have the most dedicated parents anywhere, the cream of crop, parents that are not scared to roll up their sleeves and “get busy”.

One of our families that I would like to ‘brag’ about a little is Danielle and her family. I met Danielle a couple of years ago in Atlanta. She is a fantastic kid and she is a hard worker! She gets up at 5 am every weekday to do the reading and math portions of her program, before her mom goes to work. Danielle’s mom works part time as a family physician and she has a dedicated helper implementing Danielle’s NACD homeschool program when she is at work.

Even though they have a helper implementing program, Danielle’s mom takes full responsibility for getting things done and is constantly making plans to get Danielle to do the very best she can, and to raise her intensity.

Here is Danielle’s mom telling about some of her recent accomplishments.

“Earlier this year I was just looking at all the displayed trophies that my two older kids had won for various activities at school and I thought to myself, ‘oh, Danielle has no trophy. I wish she had at least one. I don’t want her to feel left out’. Then I had a second thought, ‘you know what—she’s homeschooled, why can’t I give her a trophy?’

So I pondered what the trophy would be awarded for and since we were trying to encourage reading, I decided to award it for reading. I thought of how to make it challenging and decided that I would award it for reading for 1000 minutes. We were already keeping a log of minutes to keep us on track.

I ordered the trophy and the day it arrived she was so excited. I didn’t show it to her but told her she would get it once she hit 1,000 minutes. She immediately went to add up her minutes and told me she had a total of 930. I said to her, ‘well, we can make up the 70 minutes on the weekend and you get your trophy’. This was a Thursday. But Danielle insisted, ‘can we go read now, I want to make it up today.’ As tired as I was we went up and read for 70 minutes and I presented the trophy to her. The engraved plate read: Danielle 2018, Super Reader.’ She was so excited—she kissed it, hugged it, admired it over and over again. Mission accomplished!!!”

Danielle has since received another trophy: “Mighty Mathematician”, and a coupon for “Baking Cookies with Mom”.

It all goes to show—we can write the best program, but without YOU, mom or dad, we cannot help your child reach further and maybe get that next digit on their digit spans or become highly capable or WIN that trophy!

Way to go Danielle and family. You inspire!

P.S. – Danielle came to NACD having developmental delays. Her word recognition was at a 4.2 grade level and math at 4.5 grade level. She had an auditory digit span of 4-5, a reverse auditory digit span of 3 and a visual digit span of 6.

Now, 20 months later her word recognition is at 7.8, math at 8.2. She has an Auditory digit span of 8, Reverse auditory digit span of 7 and a Visual digit span of 10. 

NACD Newsletter, July 2018 ©NACD

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In the years I have been associated with NACD, I have worked with a many wonderful families. Since I have been around long enough now (20 years + in one capacity of another), I have gotten the pleasure of watching many children become wonderful adults. At a recent evaluation I asked one of the mothers on my caseload to write an article on her young men and how well they are transitioning from “program world” to “work place.” This is not a sudden move and the work that this mother has done on program for years now has served the purpose of preparing them to be productive, happy men who have a lot to contribute to the community and the people who are fortunate enough to be included in their circle of friends and family.

When Kristina first sent in her article, she was very good to point out some of the wonderful things that her men are doing; however, she was shy and a little on the humble side in including what a fantastic job she has done as their mother. At that point I decided that this would be an article that is co-authored so that families can get a picture of how her diligence has paid off without her feeling like she is tooting her own horn.

When I first met the Houser Boys, who we now refer to as the Houser Men, the ages were as follows: Erik age 11, Kristofer age 10, and Andrew age 8. All three boys had significant developmental delays and had been through years of school that the family was not satisfied with. Kristina began homeschooling the boys and doing program in 1996. Kristina would be the first to tell you that not every day is the perfect day, not every week is the perfect week, and not every year is the perfect year. The family has dealt with many life events over the years, as well as many stages of development that stalled at times in difficult places. There was also a time when Mom’s health was such that just making it through another day was considered a success. What has remained important is her diligence to continue in putting the pieces together for her sons with the idea that some day they would be men. Along with program, Kristina has been very committed to teaching them many chores and continually raising their level of responsibility. The boys have been responsible for many aspects of running the house, from cooking to cleaning and even into home renovation when the need arose. They have also had the responsibility of assisting in care for extended family members. There was a time a few years ago when the boys were very engrossed with imaginary play. While this seemed harmless in younger years, the longer they hovered in that level of development, the more difficult things became. I remember one of the hardest transitions for them several years back was to take total control of their free time and direct it to more mature and engaging activities. Kristina really rose to the challenge in this area and redirected her boys into manhood. Today their maturity has really grown, and without the many years of sticking with program and taking the boys through the necessary stages, I know they would not be where they are today.

Read here what their mom says about how the boys are involved in working and volunteer work as they live a life being exceptional men:

Kristina:

I read about the “Exceptional Entrepreneurs” project NACD is promoting. It is an excellent idea. As a parent of three exceptional entrepreneurs, I am eager to watch the result of implementing it. My family has been practicing a form of this for the past year. Andrew, Erik, and Kristofer have each individually pursued their interests (with my help and direction) and now have successful, meaningful, and productive work in the community.

We started this when Lyn, our NACD program evaluator, encouraged us to help Kristofer pursue work outside the home. After determining his interests, we approached a coffee shop located in our church building and arranged to have him volunteer once a week. Now he works there one morning every week. It’s the highlight of his week and his definitive activity. He is the delight of everyone who comes for coffee, and many schedule their day so they can stop by when he is there.

 

Kristofer’s success prompted us to use the same model with Andrew. Andrew loves horses. He is learning to barrel race and this year plans to do exhibition riding at some of our local Texas rodeos. He was not skilled or educated about horses, but he wanted to work with them; so we (all of the boys and I) volunteered at a local horse barn. Once a week he started learning to feed and brush and lead horses. Several months after they started helping, the boys volunteered for more mornings. Now he and his brothers work for pay five days a week feeding, grooming, and cleaning stalls, and they are also learning to exercise the horses and ride with proficiency.

 

We developed a friendship with the barn owner, and after I expressed an interest in helping the boys develop a for-profit garden, she made a large space in her pasture available to them. They work there one full day a week after they finish feeding the horses. They also work on some weekends when necessary. Their urban farm has produced enough to sell to a local community-supported agriculture group (CSA). Starting next month they will sell directly to the public through a new urban gardening awareness program begun by the Botanical Research Institute of Texas (BRIT). This is where our third son, Erik, comes into his element. We will be featured as a garden worked by exceptional entrepreneurs. We will sell our seasonal produce and educate the public on urban garden/farming. Erik is our spokesman.

 

Our entrepreneurial experience has evolved, and it all started with volunteering first at places tied to the boys’ interests.

 

NACD Newsletter, Volume 6 Issue 3, 2013 ©NACD

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By the time Stephanie reached 4 years old, the public school system evaluated her. She received the classification of “developmentally delayed in the areas of speech and language”. The next few years found Stephanie involved in speech therapy with no noticeable mark of improvement. Her gaze drifted into outer space and efforts to stimulate her into reality proved useless. The school’s area of involvement was also non-productive. Their solution was to keep her in special ed for several years until progress could be made.

After several years of frustration on the mother’s part, the move to another state across the country opened the doors to a golden opportunity for young Stephanie. She had heard about NACD from her older sister and decided to try them out as a last resort. By now it was the summer of 1996 and Stephanie who had just turned 8 yrs. old, could barely pass the academic skills required of kindergarten.

Bob Doman’s findings revealed a whole new world about child development. Stephanie’s years of speech therapy, for all practical purposes, was inadequate as it did not remediate the underlying cause of her learning problems. Yes, parents, this is where the magic begins, where you can begin to find hope at the end of the rainbow, because a man named Bob developed the mysterious sequential steps that Almighty God endowed the human brain with to enable all human beings to receive, process, store and utilize every bit of data that crosses our path on this journey, we call “life”.

The concept is simple for anyone to understand. To obtain maximum output-just make sure that all the inside wiring (or in-put) has been completed in proper order. Think of your brain as one huge mainframe computer. One mishap in programming it and the whole system is inefficient. Unless you go back and repair all the steps in order, your system will never function at its highest level. Hence, the developmental profile was created to enable Bob and evaluators like him to glance at the various steps or components that comprise one’s neurological growth. (See NACD’s journals for further reference)

Stephanie’s first evaluation showed that her processing skills or memory level operated on a 3 year old for listening skills and that of a 4 year old for visual skills. (Digit Spans of 3 to 4 for a child of 8). Her proprioception was incomplete. This made perfect sense since as a toddler she always bumped into things and got “lost in space”. Bob also noticed that at the pons level in mobility, Stephanie did not pass as she could not crawl correctly in a cross-pattern manner. Here we laughed a bit, as this was our baby who always scooted around the floor on her back with no specific direction in mind. At the upper cortical level of the brain, it was noted that Stephanie leaned towards using her left eye and left ear, which did not coordinate with her right hand and right foot. This “mixed dominance” as Bob called it, contributed to her inability to handle any academics for her appropriate grade level. Written data and verbal information were deposited on both sides of her brain. Every bit of info that entered Stephanie’s brain through her eyes & ears floundered once inside her head, which made it impossible for her to retain anything. Remember, this is a little girl, who at the age of 8 could neither read nor write. She barely could identify the alphabet. It was easy to notice that Stephanie was struggling with a sense of failure after repeating kindergarten and 1st grade twice.

Bob designed a program to fix Stephanie’s disorganized brain. His ultimate goal was to establish complete brain organization which would enable Stephanie to achieve her maximum potential. We went home with a ray of hope in our hearts. Her program consisted that first year of physical activity-crawling, walking, skipping and jogging in a cross-pattern manner and academic therapy. We worked with flash cards, reading, digit spans, math skills and educational tapes. She patched her eye and plugged her ear and did various games to draw out her dominate eye. The hardest part in all of this was the daily discipline it took to cover all the necessary requirements that would ensure Stephanie’s success. Progress that first year was slow. By the spring of 1997, Stephanie’s evaluation with Bob showed minimal improvement. It was exciting to know that her digit spans moved up to 5, yet she still could not reach the norm. Her reading skills scored around mid 1st grade level and her Math skills managed to make it to 2nd grade. In an effort to give Stephanie some sense of stability, we had enrolled her in a private school in order to be with other children. She was 8 and a half years old and still struggling to pass 1st grade. We felt stressed in trying to meet her emotional needs of going to school like other normal children, and frustrated with “time demands” to consistently cover all the daily therapies required on her program.

There is an old saying that the prayer of a humble heart pierces the heavens and mothers know intuitively that God hears the silent prayers offered on behalf of the children of this world. An unexpected assistance came to Stephanie with the arrival of her aunt from Texas. Having had prior experience with children on various programs, her presence proved to be the missing spark to ignite the daily implementation of the program into a roaring flame.

That fall, the decision was made to pull Stephanie out of school and to follow the daily activities on the program to the letter. Accountability was implemented as well as rewards for positive behavior and daily accomplishments. The first few months were tough on Stephanie as she dealt with bouts of sadness at not being smart enough to go to school with her other sisters. The further knowledge of being so far behind academically complicated the issue at times. All through this period, we reiterated the concept that hard work does pay off in the end and sooner or later, her desire to “just be like everyone else” would happen.

By Nov. of 1997, several months after her 9th birthday, we felt that real progress was being made. With the past several months of hard work, Stephanie had jumped from struggling to remember her alphabet to the end of 2nd grade reading, her math skills moved from 2nd grade to the beginning of 4th grade. Her digit spans jumped to 7’s which is considered average, even for an adult. The lights were finally turning on as the various brain cells lit up and began to function properly. Her dominance barely moved, so we went home with greater enthusiasm to complete all the therapies surrounding her eye-patching and ear-plugging.

By Christmas vacation that year, Stephanie’s outward behavior and ability to communicate in normal conversation for a child of her age, caught the attention of her relatives and friends. It was a great time to give thanks to God for her “reawakening to normal life”. To reward her hard work, we allowed her to return to school in Jan 1998. She managed to skip 2nd grade to the amazement of all (this was the child who did not complete 1st grade in June 1997) and remained at the top of her 3rd grade class for the remainder of the school year. Since her program concentrated more on therapies to complete dominance, we were able to maintain the daily demands of school, plus complete her program requirements in the evening. By her March evaluation, Stephanie jumped another year in reading and increased her Math skills by half a year, along with increasing her digit spans to 8. IIcr dominance was 90 percent on the right. The huge learning gap was closing fast and we worked harder than ever to complete her hemispheric dominance.

The summer of 1998 passed quickly and once again Stephanie increased another year in her reading and math levels. Her dominance was just about complete. School began as usual in the fall with Stephanie passing all the demands of 4th grade. Our long awaited miracle arrived shortly before Christmas. The December evaluation showed that Stephanie had finally reached her goal. She graduated from NACD with a small maintenance program to assist her in achieving even greater potential. To Almighty God we offer our sincere gratitude for guiding us to Bob Doman and NACD. May the Lord continue to bless their dedicated work on behalf of all the children of this world.

Reprinted by permission of The NACD Foundation, Volume 13 No. 3, 2000 ©NACD

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I held little Kathleen close as we stood before the window, watching James Edward follow his two older brothers and his sister across the yard and cautiously climb the steps of the school bus. I wanted to laugh and cry at the same time. The fruit of six years of prayer and family effort were tied up in that precious little boy, now sitting straight and tall, right behind the driver. James smiled broadly and waved triumphantly as the door closed and the bus pulled away.

I kissed Kathleen and headed for the kitchen. Oh, if James’s intensive-care doctors and nurses could see him now, I thought. Wouldn’t they be encouraged?

As Kathleen ate her breakfast, my mind wandered back to February 19, 1981. I was in labor, and I was reading the Psalms through the night, even jotting down Psalm 22:8-9 in my labor log:

Yet thou art He who took me from the womb,
Thou didst keep me safe upon my mother’s breast
Upon Thee was I cast from my birth,
And since my mother bore me, Thou hast been my God.

My three previous labors had been routine. I had no concern about this one. I knew each child was precious to God, and that He was in charge, so the passage seemed fitting.

Three hours later the baby came. Bob was taking pictures, when suddenly the camera stopped clicking and he put it down. His face was ashen. The baby was here, but silent, being worked on by doctor and nurses in the corner of the room. The door of the delivery room swung open and a specialist arrived. l have since learned that newborn babies are given a wellness score of 1 to 10, 0 being that of a dead baby and 10 being perfect health. Our new nine-pound son scored zero. The doctor resuscitated him mouth to mouth. It took twelve minutes to get a first response and twenty minutes before he breathed on his own. We prayed!

My memories are still vivid. We had to name the baby immediately so he could be transferred to another hospital. Surprisingly, the name “James” had occurred to each of us during the delivery, yet we had never before thought of it for this or for any of our previous babies. Later Bob brought me guarded reports of “maximum” medication to control seizures of apnea spells (interruption of breathing), of coma, brain edema. I had a lot to learn, but I had Psalm 22 to meditate on. I knew that our friends in our Alleluia Community had organized a continuous prayer vigil for James and I knew I had no power of my own.

It felt odd coming home from the hospital without a baby. I stayed busy arranging “fresh milk runs” to travel 25 miles to his hospital three times a day so it would be there for him if he survived and came out of the coma. Vital survival reflexes were not appearing, so we brought the children to see him, knowing it might be their first and only chance to meet their baby brother.

The next day, Bob and I went to the hospital to prepare for the emergency baptism. We walked over to the corner isolette where they were keeping James. The isolette was empty. Stripped. No monitors. No baby. “So this is how it feels to have a baby die,” I thought numbly. “Life is so fragile over so quickly.” Cautiously, we asked the nurse about James. “Oh, he’s there,” she motioned. We didn’t see him. We saw a nurse rocking a baby, but there were no oxygen tubes attached to it, no IVs, no monitors. Had she misunderstood our question? No, the prayers were being answered. The day of his baptism the sucking reflex began in James, as well as reflex response in his upper torso. The sterile water dripping from the syringe during the baptism was like the water flowing from Jesus’s side. It brought healing and life.

James came home when he was eight days old. As a chemist involved in semiconductor research, I was fairly confident about administering carefully measured doses of phenobarbital and dilantin. Just as the doctor had cautioned us, James could not cry to let his needs be known. All day long he lay there by the kitchen, quite motionless and uninvolved. If necessary, I’d wake him up to nurse him all very simple.

One afternoon a friend came by with supper. She was a nurse, and was anxious to meet James. She took one lingering look at him, mumbled a quick goodbye, and fled to the front porch. I found her there in the corner, sobbing. Suddenly l realized how serious the implications were. That night my sister called from New Jersey and told us about some volunteer work she was doing to help a brain injured child recover function. Yet I barely noticed her mention of The NACD Foundation.

Throughout the next 18 months we regularly brought James to medical follow-ups: physical exams, blood level tests, vision tests, and physical therapy. The doctor referred us to a pediatric neurologist for special neurological workups plus EEG and CAT scans. The prognosis: guarded. The diagnosis: developmental delay.

Aha, I reasoned, if the development is delayed, then there must be some way to help it along; to speed it up. Right? “Wrong,” said the neurologist. “There’s nothing you can do to help James. Look, you’ve got three healthy children. Be grateful. This one isn’t. Don’t waste your time and money on him.” It was only the thought of a flashing headline, “Mother assaults doctor in office”, that kept me in control. This was no Hollywood set. This was humanistic philosophy at its worst.

That very day I called my sister in New Jersey and asked her to make an appointment for us with The National Association for Child Development.

“Mommy! May I please more milk?” Kathleen’s voice intruded on my thoughts so insistently. She must have asked me a couple of times already. I poured her milk and stared thoughtfully at her as she drank it, climbed off the tall kitchen stool, and pranced out to the toy box. When James Edward was two, I recalled, he couldn’t talk. He couldn’t stand up. His appetite was poor. He didn’t eat with a fork or a spoon. His head was always leaning forward on his chest. His eyes were dull, his face usually expressionless. Even more alarming, he never seemed to feel pain. But at least by then his future no longer seemed hopeless.

At The NACD Foundation, James was evaluated on a developmental profile in the areas of mobility, language, manual competence, and tactile competence. We were asked how much time we were willing to devote to working with James at home.

Many questions that had been bothering us were now clarified. For example, James’s doctors had told us that he lacked the muscle tone needed to stand. The NACD evaluators explained that, although the muscles were there, they were not receiving the appropriate signals from the brain. As a matter of fact, James could not feel his arms, legs hands or feet in such a way that he could realize they were a part of him. The same sort of problem existed in his mouth: he could not feel his tongue, cheeks, teeth, or lips in a way needed to form true speech.

We were given an individualized “exercise program”, consisting of two dozen short activities to be performed twice a day. They were simple, but specific. We stimulated his arms and legs with deep pressure, slapping, tickling, and stimulating with cold water and hot water. As directed, we began with his fingers and worked up toward his shoulders, then with his toes up toward his hips. We vibrated the inside of his mouth with an electric toothbrush, had him lick honey off the corners of his mouth, gave him sweet, sour and salty flavors to taste and patiently taught him to blow.

We knew that James could easily locate a toy placed to the side of him, yet he never saw one in front of him. And we were dismayed that, when spoken to, he would stare off into space somewhere. Now we understood why: his central vision was barely functioning. And so one of the exercises involved eye blinders to block all peripheral vision and require central vision or none at all. Along with a flashlight exercise called “pleoptics”, this helped his vision improve tremendously. Other activities included looking at picture cards and listening to homemade information tapes. James breathed into a special face mask 20 times a day in order to increase his lung capacity and thereby increase the supply of oxygen to his muscles and to his brain. Going through the exercise program took from three to four hours a day.

Was it worth it? The results were evident within the first week and continue to this day. James’s facial responses became more normal. His mouth and tongue control improved and speech followed. Not only did his muscle tone improve, but his whole physique changed. The once shrunken chest became robust. He ate much better. His drooling stopped when wheat was eliminated from his diet. His sleeping habits became more normal, and the terrible habit of grinding his teeth ended. He was more clearly aware of his environment. Just seeing the dullness in his eyes become transformed into alertness told us it had been well worth the effort.

Every three months James has been re-evaluated, and his exercise program modified according to his progress in each specific area. New exercises improved his balance, leg muscles, flat feet, vision and eye control, motor ability, speech, comprehension, visual memory, and auditory memory. We were thrilled when, at age two-and-a-half, he took his first steps. Shortly after that, James was the ring bearer in a large wedding. When the guests realized who this wobbly little boy was, he brought more applause, cheers, and tears than the bride!

Never to be outdone by his siblings, James entered a one-mile citywide race when he was five years old and finished in 14 minutes and 12 seconds. He never noticed those who passed him. He was intent on finishing, and when he did he was cheered and congratulated. Again, there were tears in the eyes of those who knew his story. He jogged the same race six months later and shaved the time by a full minute and a half. I know he will keep at it until he reaches his goal: to win the pewter goblet.

Last year James attended kindergarten successfully not “special” kindergarten, but regular school! He graduated with his class and proceeded on to first grade. He still has some difficulty with the fine motor skills used in printing; he is slow and deliberate, and at times somewhat dyslexic. But we understand what is going on with these functions. We know which exercises to do with him at home to improve those fine motor muscles. We also know that he needs to establish a clear “left-eye dominance” to match his left-handedness, and the dyslexia will disappear.

Two weeks after school started, our older children came home and told us that James was one of seven first graders congratulated at a school assembly for scoring 100 on a math test. (There are 27 students in the class.)

Without the assistance and encouragement of the National Association for Child Development, James’s life and ours would have been very different. We’d like to let others know about this wonderful organization l know there must be other parents needing hope, help, and encouragement. And if any skeptics want proof, send them to James!

Pamela Merritt Nestor

Reprinted by permission of The NACD Foundation, Volume 10 No. 13, 1996 ©NACD

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