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:

[kad_youtube url=”https://youtu.be/YkogfmstyVA” width=”960″ height=”540″ maxwidth=”1200″]

Photo Gallery

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Good!

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

The post Intensity: Get It – Got It – Good! appeared first on NACD International | The National Association for Child Development.

Years ago, I saw a TV show on Discovery with an organization from England that transformed “typical” children into geniuses using programs close to what NACD is using. I was fascinated but frustrated because I believed that I would never have an opportunity to follow this type of program in Romania. After I registered my son in an NACD personalized program [NACD TDI Program] last year and saw how fast a brain-damaged child can learn to process information, I quickly understood that NACD was the key to success. My dream created by that TV show was about to come true. I read about Simply Smarter and registered immediately. When I first started the Simply Smarter program, I was processing 7 directions. Some studies show that “smart” people are able to process between 7 and 10. NACD said that if you are processing 10, you are doing very well. It has been more than one year since I started Simply Smarter and I can process 15-16 pieces of information at this point. This is huge, folks, very huge. I was in the dark a year ago. I started a discussion and after 2 minutes forgot where I was going with the conversation. I could not remember too many things, nor could I understand many important pieces of information because of my weak auditory processing. There are many of you out there in the same situation that I was experiencing. Now at a processing level of 15-16, things have changed so much. I can think, talk and learn faster, hear more, and write better. I have many good ideas. I can function better. I have improved my life and the life of my family also. I’ve started to remember things from my childhood, memories that I thought were lost!

Thinking gives you strength and you can achieve things that most people find impossible to achieve. For those of you who have children in NACD, you know what going from 7 to 16 means. For those of you who don’t know about NACD, let me try to explain it to you. It is like lifting weights. At the beginning, perhaps you can lift 10 kg. Then you start building your body and after one year you can lift 200 kg. In this case, however, you are building your intelligence which is so much more important. Much like those body builders who become addicted to growing muscle, I am addicted to building intelligence. I now am 36 years old and by the time I am 40 I want to process 25-30 pieces of information.

I love Simply Smarter and I will use it for the rest of my life. If you want to ask me questions about my experience with Simply Smarter, feel free to do so at roviancom@yahoo.com

—Razvan

P.S. My wife started Simply Smarter at a processing level of 8 last year. She can now process 20-21 pieces of information (However, I am still the boss in the house!).

The post Manole Family – A “Discovery” Leads to Success with NACD & Simply Smarter appeared first on NACD International | The National Association for Child Development.

When Jennifer was a month old, she was given a brain scan and the results showed some abnormality. I was instructed to give her “phenobarbital” which just seemed to make her sleepy and unable to nurse. I, therefore, decided to discontinue the medication, and Jennifer appeared more alert and nursed more often after that.

We were told to stimulate Jennifer as much as possible. A nurse assigned by the hospital visited our home every 3 to 6 months to evaluate Jennifer’s progress.I then decided to show her bright colors and toys, take her to shopping malls for stimulation of objects and people. My husband, father-in- law, and I read to her and gave her lots of attention.

After 6 – 8 months, she began to show some improvement mentally and physically.

When Jennifer was twenty months old, my husband and I took an intensive early child development program where we learned some techniques to stimulate her physically and intellectually. I made large flash cards with pictures of famous people, animals places, objects, and words. I did lots of creeping and crawling with her. She ran, jumped on a trampoline, swam and brachiated. I flashed word cards in Spanish and English, played classical music and Wee Sing tapes and played tapes in Japanese, Spanish and French. She was also in two play groups with children her own age for socialization.

When Jennifer was three, she read books independently which was a shock to the hospital staff. At age 3 she read words in English and Spanish and showed gifted behavior on all her hospital tests. She was also enrolled in a small Montessori preschool for 3 hours twice a week, and I continued to teach her at home.

I remember one amusing incident when, at age 3, she read a book for the librarian who thought that Jennifer had “memorized” the words. Every time we returned to check out books for Jennifer after that, the librarian would call other adults over, open a book (2nd grade level), to any page and ask Jennifer to read it. Jennifer would read the page correctly and with expression. The librarian would then quiz Jennifer on the material. One day (several weeks later), I told the librarian that Jennifer’s delight in visiting the library was diminishing with her constant testing of my child. As a result, the testing ended, but Jennifer continued to be a wonder to the library staff.

When Jennifer was 5, we moved to Orange County, but continued to visit friends in San Diego once a week because she missed her friends terribly and was in Japanese and Spanish classes with them. She was tested privately and found to be gifted in every area but socialization. She also appeared to be borderline hyper and showed some aggressive behavior towards her peers. She excelled in both swimming and gymnastics. She went to school part-time (for socialization), and was taught at home by me. She also attended extra-curricular group classes in music and foreign language.

At age 7, the Children’s Hospital of San Diego discharged her since her overall I.Q. was in the highly gifted range. The doctors did not know what to make of her amazing progress due to her Apgar score at birth. The hyperactivity was still there, but she was still advancing intellectually. It wasn’t until we went to NACD when Jennifer was almost 10, that we were able to pinpoint the problem and work to resolve it. Since then, we’ve seen a tremendous change in her both physically and intellectually. Jennifer is 14 now, and we continue to have her evaluated once or twice a year.

With NACD’s guidance, we’ve resolved the hyperactivity, worked on correcting her dominance, and her ability to process and retain information which has helped her academic success. The digit span activities, specific listening exercises, chess lessons, and neurological exercises set up by NACD have prepared Jennifer to master college material. In addition, she continues to progress in her home program prepared by NACD.

Since Jennifer’s neurological evaluations by Mr. Doman, and her discharge from Children’s Hospital, she has won numerous trophies and plaques in essay contests, chess, art exhibits, vocal and violin competitions, science fairs, poetry and short story contests, Latin competitions, and swimming events. During the summers of 1992 and 1993, Jennifer auditioned and won to play in the 1st violin section in the Disney Young Musicians Symphony Orchestra.

Presently, Jennifer is the Concert Mistress for the Orange County Youth Symphony Junior Orchestra, a title she has held for two consecutive years.

Last July, Jennifer received a partial grant to attend the Maurice Ravel Violin Camp at St. Antoine, France, where she played a solo for the 26 French students enrolled in the camp with her.

Jennifer also scored in the 99th percentile (the ceiling scores) on the high school entrance exam for academically enriched classes. This was without being enrolled in school full time.She is a readaholic, favoring Isaac Asimov’s science fiction books. She has studied Japanese and Spanish, but is currently studying French and Latin, and sings in Latin, Italian, French, and German. She also enjoys composing music when she has the time.Jennifer’s favorite artists are Leonardo da Vinci and Picasso. She enjoys string music by Mozart, Hayden, and Lalo. Her favorite opera is “The Magic Flute” and her favorite musical is “The Phantom of the Opera.”

Jennifer is tutored in Latin and French, studies violin, piano and voice, plays 1st string in a chamber quartet group, is concert Mistress in a youth orchestra, and attends Orange Coast College.

At age 14, Jennifer seems socially, intellectually, and physically excellent. With the educational program designed for her by NACD, and through her own efforts, she has achieved many marvelous accomplishments.

JENNIFER ON NACD

I think that NACD is a very good program. Mr. Doman is pleasant, witty, and he really listens to me. His program works too. I’ve seen improvements in my memory skills and a decrease in hyperactive behavior. I can now study for longer periods of time with better concentration. I look forward to seeing Mr. Doman on my evaluation visits. He really looks out for the kid’s welfare and makes sure the parents are doing the program correctly for their children. He also defends my right to have free time and creative time in spite of my hectic schedule. He’s a neat person!

Reprinted by permission of The NACD Foundation, Volume 10 No. 7, 1996 ©NACD

The post Accelerated: “Jennifer” appeared first on NACD International | The National Association for Child Development.

Elliot was born with hypoplastic left heart syndrome (HLHS), which means that the left side of his heart, the side that receives oxygen-rich blood from the lungs and pumps it out to the body, was severely underdeveloped. In addition to this very severe heart defect, he also had a restricted atrial septum, which meant that he would most likely be born blue and need immediate surgery. Usually this abnormality is first seen in a prenatal ultrasound, and such was the case with us. We had three options: we could choose to abort Elliot, carry him to term and watch him die within the first few days of his life, or undergo a series of open-heart surgeries in an attempt to repair the defects.

After a lot of prayer and seeking counsel, we decided to give Elliot the best chance at life we could possibly offer. At the tender age of 6 days, Elliot survived his first, the riskiest, surgery. He stayed in the hospital for two long months. Elliot needed a lot of support to stay alive. His oxygen saturations were low and he had to be on oxygen all the time. Even on oxygen his saturations remained problematic. He was simply too weak to drink from a bottle, and each day was a choice of breathing over eating. To compound matters, he also had severe reflux and could hardly stomach any milk. So before we could leave the hospital after two months, Elliot had fundoplication surgery and a G-tube placed, which is a feeding tube placed through the wall of the stomach. The second open-heart operation took place when Elliot was 4 months old, and the third and final surgery was shortly after he turned two. This was the most trying time in our lives. Elliot was full of personality and life, but at the same time, he was often tired, weak, and short of breath; his muscle tone was floppy and he would very seldom look at me.

I was aware that in addition to ongoing serious health concerns, children who have had open-heart surgery as infants due to complex congenital heart defects are at a higher risk for neurodevelopmental issues, compared to children without congenital heart defects. However, as an experienced occupational therapist, I was determined to face my son’s challenges head on and began working with Elliot as soon as his condition stabilized. I tried various techniques, went to courses to learn more, and sought out the best doctors and therapists; yet, despite my efforts, Elliot was not doing well. I knew he could not see well, he had slow rolling and quick jerky nystagmus, and he really needed more oxygen. I tried everything I knew to help him to drink something by mouth, but he was simply too tired.

About the time that Elliot was one year old, I attended a child development seminar at The Institutes for the Achievement of Human Potential in Philadelphia and was intrigued by the idea of neuroplasticity. At the seminar, I learned some things that were helpful to Elliot, but I felt the Institutes’ methods were very dogmatic, regimented and limited, and were certainly not a good match for our family. They would also not answer any questions that I had after we left the course. I continued to search for something that could help Elliot’s specific challenges and unique needs and delays.

Somehow during one of my Internet searches I stumbled upon the NACD website. Soon after, I spoke to someone at the main office and decided to give NACD a try. I had an idea in my heart of what I was searching for, and during my conversation with someone at the office it seemed like they understood what we needed and expressed that they have helped children with similar needs to ours. I knew that no therapy or treatment could take away the diagnosis; but I believed that there had to be something that we could do to enable Elliot to overcome some of the obstacles that he faced. NACD seemed not to be taken aback by the multitude of issues that seemed completely overwhelming to me at times.

Implementing the NACD program has been a pretty straightforward process. Elliot’s evaluator, Bob, takes into consideration how much time I am realistically able to dedicate to working with Elliot and adjusts the activities accordingly. I appreciate that. As parents we are dedicated to helping our children achieve their potential, but the NACD program doesn’t have to consume our lives to the exclusion of everything else in order to attain change.
Elliot was three at his first NACD evaluation. After three years on program, he has achieved remarkable progress.

Children with HLHS often have diminished physical strength due to poor oxygenation of their organs, and Elliot is no exception. As a toddler, he could hardly run across the room without being out of breath. Now, after three years on program, Elliot still has problems with oxygen saturation; but due to all the physical strengthening we have done with NACD exercises, his ability to utilize the available oxygen has increased. From a very weak, very sick baby, Elliot has grown into a strong, healthy six-year-old. He runs on the treadmill twice a day for 15 minutes. At one of our recent cardiology appointments, the cardiologist commented on how well Elliot is doing. His words were, “You have taken a very medically complex child and changed him into a regular child.”

Many infants who spend a lot of time on a ventilator have trouble feeding because they have an aversion to anything placed in their mouths or because they are simply too tired to eat. Similarly, Elliot as a baby was also too weak to bottle-feed and needed a G-tube to keep him nourished. Right before he turned three, Elliott went through a behaviorally-based feeding program and was finally weaned off his G-tube. But he still despised eating and I dreaded every meal. Every bite and every sip was a battle. “Take your bite–1, 2, 3, 4, 5…” I wonder how many times I have said this phrase. Now, as his neurological organization improves, we are discovering that Elliot is starting to relish eating. When Elliot was a toddler, there were times that I would consider a meal a success when he ate a quarter of a Cheerio. Recently we had some of his Uncle Danny’s fare and this was his comment: “Man, that Uncle Danny is a genius! These ribs are so good, they can change my attitude!”

Before we began applying the NACD program, Elliot was extremely sensitive to noise, so much so that he would burst into tears at any unexpected sound and would be inconsolable for a long while. Just having people sing “Happy Birthday” at a birthday party and the subsequent hand clapping was difficult for Elliot. Fireworks were impossible. He would go to his room, close the door, and still cover his ears every time a firework went off. NACD’s TSI – Targeted Sound Intervention trained Elliot’s brain to process sound correctly. He doesn’t startle that easily in situations where there are unexpected loud sounds and, in fact, he even enjoys fireworks now! In some situations, however, such as crowded rooms, he still seems to be a little lost. Part of it is due to his reduced vision, part to his inability to hear everything that is directed toward him; but we are hopeful that the NACD program will resolve these issues as well.

Part of Elliot’s auditory issue is also not differentiating correctly between different sounds. For instance, for the longest time Elliot did not hear cars coming when he was on his bike or just walking with us in the street. Lately I have seen where Elliot’s awareness is increasing, to where he can hear cars coming or cars starting up. He still needs more healing in this area to be safe, but I am relieved to see it improving.

Elliot’s difficult start in life affected his vision as well. At seven months of age, Elliot started wearing glasses. They were +6 diopters at that point. With every year, his prescription became stronger and his vision deteriorated. At his last optometrist appointment, right before we saw NACD, he was prescribed +8 glasses for farsightedness. His vision tested at 20/100, which basically means that Elliot could see objects at 20 feet, which other people see at 100 feet. I became worried that he would go blind. Unlike the optometrists, whose only solution for Elliot’s worsening visual acuity was increasing the strength of his glasses, NACD recommended that we start working to develop his vision. We discovered that we were able to eliminate his glasses and really teach him to see.

With the NACD activities we were able to stimulate the vision centers in his brain and to build his ocular mechanisms, and gradually Elliot’s eyesight began to get better. Naturally, progress is always slower than what mom wants; but I can tell his vision is getting better because his functional ability to see is obviously stronger, and testing confirms that he is seeing better and better.

Elliot has been reading on the iPad, and for the last year, we have been able to gradually decrease the size of his reading font. This week Elliot is reading his first regular print book! The distance vision seems to be harder to improve, but even there we are seeing progress. Where at first Elliot did not notice anything at a distance, he now notices signs when we drive in the car. His newest game is to try and tell the gas price when we drive by a gas station. Sometimes he gets it right and sometimes not, but that is progress for a boy who was really completely unaware that there was a world out there.

Apart from the acuity issues, Elliot also had a significant nystagmus and a significant convergent strabismus. To read or see anything prior to NACD’s program, Elliot had to turn his head all the way to the left and tilt his chin up. These issues have not cleared up completely, but they are so much better. Elliot can look straight forward to read, watch TV, play iPad, and do Legos. His nystagmus has decreased tremendously and his convergent strabismus is much less. We are still working on these issues, but as long as we are progressing, we are confident that we are going in the right direction. So where Elliot was losing vision year after year before the NACD program, we are now gaining vision and no longer worrying about watching him go blind.

In addition to Elliot’s physical issues, we have also faced many challenges behaviorally. Overall behavior was a big stumbling block for us and there were times that it was extremely difficult to keep things positive. Elliot would sometimes lash out physically, and other times he would just passively refuse to cooperate. Elliot would also engage in repetitive actions, such as non-purposeful running back and forth. We had no idea why he is doing this or why it was so difficult to stop doing it. Bob explained that it was his vision sensory channel that was broken, that Elliot was playing with it when he was doing his repetitive running, and that he was continuing to further break that channel. In addition, Elliot did not really play appropriately. He would be in his own world many times and did not engage with toys or people as much as other children.

There were other behaviors that were disruptive to our family life. Many times Elliot would be so easily “set off” when a situation suddenly changed. For example we usually read a Bible story in his room before bed. But if we decided to do it in front of the fire because it was so nice and toasty, Elliot would be extremely upset. This made it difficult for the whole family, because we felt like we had to be pretty cautious to keep things the same.

Elliot and our family needed help in these areas to be able to make the changes that we needed to see in Elliot, and even just to keep our home a happy place. We worked very closely with Bob on getting Elliot’s behavior under control. First, NACD gave us a lot of direction, activities, and support to re-direct the repetitive behaviors and teach Elliot how to engage purposefully and eliminate the need for doing those behaviors. Also, in regard to Elliot’s need for routine and “same-ness,” our evaluator did not think that it was so strange at all! Bob explained that Elliot was a visualizer and that this was a strength. The problem that Elliot ran in to is that there was not a good balance between his visualizing and conceptualizing. In other words, Elliot was great about thinking of things in pictures and not good at all at thinking about things in words. Again, NACD had ways to work on this and it is amazing how well Elliot has improved in this area. We recently moved, and Elliot, instead of falling apart, was more ready to move than I was! He went with us one time to see the new house and said, “The other house got a little old,” and that was it! We moved…no tears, no drama…

To improve Elliot’s cooperation, we had to try a few things to get to a strategy that would work for him, and now his behavior looks remarkably different. It is not that Elliot does not get in trouble anymore…he certainly does; but it is about having the tools and the support for us as parents to know “when this happens, this is what we do” and stick to it. Knowing how to handle difficult behaviors, getting a firm plan in place, and being super consistent with following that plan has made a tremendous change for our household, and now I can see that child that I always knew was in there. In regard to his play skills and engagement, as we learned through NACD how to address his behavior and provide the needed structure and stimulation for Elliot, he is really coming out of his shell. He loves his little sister, enjoys play dates with friends, and initiates playing with all sorts of things, the favorite certainly being all things LEGO!

For someone who was expected to perform poorly due to his fragile medical state, Elliot is surely doing remarkably well academically, surpassing many of his typical peers. In addition to fluently communicating in English and Afrikaans, mom’s native language, Elliot tests at a sixth grade level in reading comprehension, sixth grade level in word recognition, and fifth grade level in math—all at the age of six!

Our work with NACD is far from being done; and yes, it is really hard work. But it is all worth it; even Elliot will tell you so. He knows he cannot see as well or hear as well, and is not as strong, as some of his friends; but he also knows that he has come a long, long way and that he is able to function, play, live, and interact at a totally different level than before. He also knows that he has great strengths that many of his friends do not have. He knows he has a great memory, reads fluently, and understands math at a higher level, and that he can play a mean piano!

The world is not always an easy place to live in. Even as adults with no issues, we know that life is hard work; that even for the strongest of us it is not always easy or fair. My take on why we keep going and working and pushing is that for our kids who may have a disability, or some kind of difficulty, life is not going to be easy either; and as a parent I need to equip my child to the best of both of our abilities to face life the best that he can. To me that means taking the weak parts and making them as strong as possible and taking the strong parts and making them even stronger. Elliot is not going to be a professional athlete, but he has plenty of other strengths that will set him apart. NACD has helped us to work on the weak and the strong parts, and for that I am so grateful.

I’ve been so impressed with what we have been able to accomplish under NACD’s guidance that I have been training under Bob Doman. I would love to bring the same kind of hope and knowledge to as many families as possible. I truly feel that this is my calling in life. Being an occupational therapist, I feel passionate about helping people already; but with NACD I now have the knowledge of how the brain changes and how to bring those changes about. I am so honored that I am able to come alongside parents and children and help them reach, to the best of our abilities, the potential that God has given each and every individual.

Praise be to God and many thanks to NACD.

NACD Newsletter, Volume 7 Issue 4, 2014 ©NACD

The post Elliot appeared first on NACD International | The National Association for Child Development.

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

The post Justin appeared first on NACD International | The National Association for Child Development.

Now what?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

NACD Newsletter, Volume 6 Issue 6, 2013 ©NACD

The post Trevor Jones appeared first on NACD International | The National Association for Child Development.

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

The post Twenty Years Later appeared first on NACD International | The National Association for Child Development.

At our recent staff training/brainstorming session last October, it was time to talk about articles for upcoming newsletters. I personally like to contribute in January because it fits right in to New Year’s resolutions, setting priorities, and making plans. Over the years I have actually written articles that touch on some of the key components of this current topic, but not from this angle. In fact, even though our family has been involved with NACD for over eighteen years now, I don’t think I could have actually written this one prior to now. It hasn’t been until recent years, maybe even recent months, that I can honestly say that what I believed to be true all so many years ago has played out in real life. This article will touch on why we started and have continued with NACD for almost two decades; it will talk about how to accomplish more by having siblings do activities (cheap labor); and it will touch on the fact that non-hurt/neuro-typical kids can gain function exponentially by having their own programs as well. What I want to focus on, though, is beyond efficiency, beyond the hurt child gaining additional function, and beyond making good use of time via sibling assistance. It is actually directed at what I believe to be the greatest impact that having a hurt child, more specifically an NACD hurt child, has had on the lives and the development of character in his siblings. It is about the fruits of all those hours spent with their brother helping him to accomplish the impossible.

When we first started on NACD, our son had been receiving the very best of what traditional therapies had to offer, and yet we saw much greater gains in only 3 months of his individualized program than we had seen in years with various therapists and specialists. Our original prognosis for Evan was grim. Walking—probably not. Talking—very unlikely. Seeing—well, there just wasn’t enough of the occipital region of the brain left undamaged. While Evan had begun walking prior to our initial evaluation, structurally it was not a good walk. Language was considered a handful of approximations for a very limited number of anticipated/rote words. Seeing—was just a dream. Within a short period of time on program he was talking more, walking better, and his brain was beginning to understand how to process some visual information. At the time, Evan was 5. Philip was 6. Kenny was 4. Mom was tired. We had a long program to accomplish each day but fortunate for me, the other two brothers were young enough to believe the old Tom Sawyer white picket fence routine. I made it look fun enough to hand over the pleoptic flashlight for several rounds a day to brothers. Very quickly they starting joining in on more and more, and within a few years they were experts at the implementation of Evan’s program and, in fact, did a higher percentage of it than I did. I learned how to use the different temperaments of the brothers in order to decide who did which activities. They greatly enjoyed coming to Evan’s evaluations so that they could hear Bob say they were doing a good job with their brother. More than anything, they learned that hard work (when it is the right work) accomplishes what some people would give up hoping for. I can honestly say that my boys have never looked at a task and said, or probably even thought, “This is too hard.” They know that they were a big part of helping their brother do things that doctors said were not possible. I attribute the fact that at the ages of 24 and 22, Philip and Kenneth are decades ahead of their peers in their careers due to what they learned all those years ago with the pleoptic flashlight, the digit span cards, and all the other tools of our trade. They started to understand that once a good plan is established and worked on, success only takes a little bit of time and lot of determination. As Philip and Kenneth grew and became busier, I was fortunate to seem to have a supply of additional program implementers. Jason was born when Evan was 6, and Grant came along 4 year after that. I am not sure we even “taught” them how to step in and do program activities with their brother or how to assist in any way. By this time program was so much a part of our lives that it would have been like having to “teach” them to eat. It just happened because that is what we do.

While one would think that having a brain-injured child is very difficult on a family, the reality is that meeting the needs of each of the children in the family is the more difficult task. I had decided to homeschool at least through the early grades when they were young. Truth is, I am selfish with my children and I enjoy them immensely. In fact, when they have each entered public education at the High School level I cry like a baby the first morning that I drop them off. Since we did decide to homeschool and since we still had a fairly long program for Evan, it only made sense to utilize the same mentality with the non-injured brains as the injured one.
Accelerate processing skills. Input gets output. Establish a positive learning environment. Guess what? These things work like a charm with a fraction of the time or money that anything else could have. We had regular evaluations and utilized NACD for accelerated cognitive development as well as their educational needs, and each son has entered school with huge advantages over their peers. While I am a proponent for homeschooling given the right circumstances, as an evaluator I know that it is not always the best choice for each individual child. I have a large number of clients with siblings who are seen that attend private and public schools. With these children the key is using the time available to hit the processing pieces that create a critical mass effect on cognitive skills. Just think, 15-20 minutes a day on an individualized program truthfully reduces hundreds of hours struggling, fussing, and crying over homework. When learning is easier, everything else falls into place. If you haven’t already begun to place siblings on program in order to get their neuro-developmental needs accelerated, I would highly recommend it. On top of helping them achieve, it also sends them the message that they are important and that their needs are just as big to you and the “special needs child.”

I won’t go in to detail on how important planning and scheduling is. The only word that I will say about it is “gargantuan.” If you want to be motivated in the area of time management skills, read and reread and reread Bob’s recent article on it. Without good scheduling and management of time, my ship would have sunk years ago. As a mom, I work, I homeschool, I chauffer, I cheer them on in sports, and I check up on where they tell me they are and what they are doing on a regular basis (insurance). Without planning, the vast majority of the things I am responsible for would fall by the wayside.

I have had families ask if they think the sibling might someday resent having to make sacrifices due to the hurt child or the child who struggles. While the right answer has always come out of my mouth, I confess to having some fears along these lines in years past. I tell you this, though, not one of my sons today has anything but good things to say about their brother, Evan. One of my favorite stories took place several years ago when they were all in the van with me on a daytrip. One of the younger boys started talking about someday when he grew up. He threw in that he would have a garage apartment in his home for Evan to live in so that he could help with his children. Then an amazing conversation started to take place with the boys. First to jump in was my oldest who explained that he was the oldest and therefore got first pick. Then the next in line started to argue that he has been just as much a part of Evan’s success and care and that he had every intention of having Evan in his home some day. As they all started to argue back and forth over “who would GET Evan,” I calmly asked, “Evan, who do you think you might want to live with when Mom cannot be here?” Without missing a beat his answer was, “preferably my wife and children.” I convey this story as a testimony that the time that my boys have spent assisting their brother and basically building his brain has created a bond that is far beyond what most brothers go through. For many families the biggest fear is what will happen to their special needs child when they are gone. For me that fear is more along the lines that I hope they don’t come to blows deciding who takes the lead in responsibility for everybody’s favorite brother.

I sum up this article encouraging you to consider involving the siblings to play a big part in the implementation of program activities. Do not see it as a sacrifice that they have to make; it is a blessing that you are bestowing on them and their futures. Just last week Jason said to me, “Mom, I don’t think any of us would be nearly as successful in the things we do if we didn’t have Evan.” He is so right. I have to ask myself, “Is Evan where he is today because of them, or are they where they are today because of Evan?”

Reprinted by permission of The NACD Foundation, Volume 25 No. 1, 2012 ©NACD

The post Siblings of NACD Special Needs Children: The Game Where Everyone Wins appeared first on NACD International | The National Association for Child Development.

My husband and I felt like deer in the headlights as we walked into Bob’s office for the first time. Just a few months before, on her first birthday, our little daughter had been diagnosed with severe cerebral palsy. Bob was quite matter of fact, confident, firm in a loving sort of way, and completely open and hopeful about the possibilities for our little daughter. We walked out of his office feeling like we could suddenly see much better in the blazing light of disability.As we started the crawling portion of our program for the first time I actually felt hopeful about the possibilities of Maggie being independently mobile. But, the hours of program turned into days, and weeks, and months.  Just moving arms and legs, over and, over and, over again with no sign of response or recognition in her little muscles. I have to admit that my hope of ever seeing Maggie move on her own had long since died at worst or was completely hibernating at best. But we took a chance on the comforting and confident direction of Bob and just kept at it. Then one day, in the fall of 2009 I put Maggie on her tummy in the living room and went to do a chore. I came back to find her in a slightly different spot. I cocked my head trying to remember exactly where I had placed her. A few days later it happened again. I put Maggie down, left the room, came back and she wasn’t where I left her. I wish we could have taken a picture of our faces when we finally had to admit that Maggie was moving, crawling in fact, on her very own! It took about a month before anyone could actually catch her doing it. But it was real. The right stimulation, at the right duration, at the right frequency had worked. Or daughter was moving independently. What a joy and gift, especially to Maggie. In celebrating this accomplishment, we wanted to share a fabulous picture we took of Maggie on her first maiden voyage into the back yard. I placed her on a carpet in the middle of the grass, turned by back to do some yard work, and within 60 seconds Maggie had crawled to the only muddy spot in the yard. Aren’t kids all the same! If you’re feeling hopeless, or discouraged, or just plain tired about your child’s own program and progress don’t give up! Your work and commitment will bear fruits, and it will be such a precious joy and gift when it does. Trust that the seed will grow. NACD Newsletter, Volume 3 Issue 2, 2010 ©NACD

The post Maggie’s Story appeared first on NACD International | The National Association for Child Development.