by Jenny Marrs
When John was born in the fall of 1994, we were devastated with the diagnosis of Down syndrome. We were so scared about what kind of future he would have. Among the tons of literature we were given to help us understand Down syndrome, I found no silver lining, and I only became more fearful. Not only were there many negatives about the potential of a child with Down syndrome, but the literature also listed many frightful medical problems that the child might encounter.
I turned to doctors and therapists for reassurance, and received none. I could not understand or accept that this was to be John’s future. Whereas I could see the low muscle tone, I could see no cognitive delay. John focused and smiled and laughed on target with what developmental charts predicted for any child. He was very aware of his surroundings. I wondered, “Are they born pretty much normal, and then just don’t progress?” I could not understand. I also wondered if there was a mistake with the blood test. My child just was not the child that the books and the literature described.
During the first three months following John’s birth, I was flooded with negatives about Down syndrome, from all avenues. John battled with constipation, and then he contracted his first cold at three months. I found that the doctors were just willing to accept the problems that cropped up as part of the syndrome. I know now that these professionals just do not know the truth. They grew up, as I did, with an image of what most people believe Down syndrome appears to be. Then that image was reinforced by what they were taught in college. To illustrate what society teaches us about the potential of the child with Down syndrome, look at what is written in the American Medical Association Family Medical Guide, “People with Down Syndrome usually can eventually be trained to do simple but useful jobs. They will always, however, need a protective environment, and they will have to be cared for either by their families or in a home for the mentally challenged. Life expectancy is reduced if there are associated severe congenital defects.”
When John was four months old, I found The National Association for Child Development, and I learned the truth about the potential for the child with Down syndrome, as written by Bob Doman, NACD’s director.
There are no inherent boundaries limiting the progress of a child with Down syndrome. Without a doubt, they can progress at a much greater rate than is currently believed possible.
Years ago, I utilized my rapid approach of instruction for my pre-schools which contained a combination of brain injured children, children with Down syndrome, “normal” children, gifted children, etc. I was surprised to find that on many occasions the students who had Down syndrome learned faster than the other children in the classroom. In fact, at two years of age they were learning to read and develop their language abilities at quite an accelerated level, having been given the opportunity.
NACD supports the use of Nutritional Intervention (TNI) and Bob Doman addresses potential symptoms, but he does not accept those symptoms as part of the child and he does not feel that nothing can be done about them. Rather, he explains why the problem could occur, and then gives us a plan that helps to either prevent the problem, or ways to correct it. Our lives changed when we found NACD because we then understood and we had answers to our questions that no one else would or could answer. We now knew that there wasn’t a mistake with the laboratory, and we could accept the Trisomy 21. We just were not going to accept the syndrome with its list of symptoms. With NACD, we were going to learn how to prevent the syndrome from happening.
Meanwhile, John’s cold at three months had led to an ear infection, and a rattle in his breathing. Although his cognitive functions were very aware, his muscle tone was preventing him from developing his gross motor skills in a normal time frame. We weren’t able to travel to NACD’s main office in Utah at the time, so I read as much as I could, which enabled me to devise my own program for John. Thanks to NACD, I had the most crucial ingredient, which was belief in my child’s potential.
After beginning our program, and having put John on vitamins, which NACD recommends, John’s rattle left his breathing, and his gross motor skills began to improve. By seven months John was developing in a typical time frame in every area. He took first steps at thirteen months. I was making calls to NACD monthly, hoping against all hope that Bob would see John in St. Louis, but at that time they were taking no new clients at the St. Louis chapter. Finally, I put aside my fear of flying and set out for Utah when John was 20 months old. Although we had done well on our own program, we learned so many new things about John, and further exercises we could do to improve various functions through the program provided by NACD. We met John Jaquith in Utah as he was to be our consultant. He has partnered in every aspect of John’s development ever since. I consider him a close member of the family. There is no one, not even I, who believes in little John’s potential more than John Jaquith. So many times John has recommended an exercise that I felt little John wasn’t ready for at the time, and then, lo and behold, I was wrong, and little John would shine in his accomplishments.
After we returned from Utah, we began our NACD program. Bob had specifically asked us how much time we would be able to give to this. He also assured us that if we weren’t comfortable with an exercise, we could discuss it, and decide whether we would continue. Nothing is written in stone. NACD is not strict or rigid in their recommendations. We found the program worked into our daily routine rather easily, and John was thoroughly enjoying every portion of it. Whereas before, when we were stumbling around with our own program, with NACD’s program for John we knew exactly how to best implement exercises, how often, and for what duration. It was wonderful to have a specific plan with specific goals. In addition, I had the benefit of having a very knowledgeable professional keeping an eye on every little detail, spotting potential problems and fixing them before they became a problem.
We left Physical Therapy (PT), which had been very expensive at $180 an hour, and found NACD not only far superior, but much less costly. I could see the results with NACD, and understand the philosophy, whereas Physical Therapy was showing very little benefit. Our PT sessions were a half-hour every other week. John cried for the duration, and I was given very little advice about what I could do at home. It seems to me that the typical professional views the parent as an uneducated bystander who is largely unrealistic about the child. NACD views the parent as the most important ingredient, and insists that we, the parents, must have belief in our child’s potential. We also left Early Intervention (EI), because their main objective, it seemed, was to keep my expectations “realistic,” however, their realism and mine were miles apart. Government programs, we have found, seem to be aimed at keeping the child (money) in the system. I have kept in touch with all of the providers John has ever had, because I want John to show them what the possibilities are for the child with Trisomy 21. Eyes are opening! We have startled several naysayers by having John read for them, from the time he was two and a half years old.
John is five now, and the program has resulted in improvements in so many areas. John’s tactility is excellent, from head to toe to fingertips. His pencil grasp is excellent, and he is writing words. In spite of the fact that John was born very low toned, his strength is now excellent. John runs fast, he jumps, he also loves all sports and is quite capable. His focus is strong; with NACD we have done exercises to strengthen the left eye, something NACD found that I never would have caught until it had worsened. Academically, John knew his alphabet, both upper and lower case, at age three. He also knew the sounds of the letters and began to sound out words at this time. He began to read at age two and a half and he is now reading on a first grade, sixth month level. He learned his numbers before age three and mathematically he is at a Kindergarten, seventh month level. All of this is due to NACD’s recommendations. Without them I never would have thought to teach these things to a toddler. I would never have expected that this could be accomplished. Even if I’d had the inclination, I wouldn’t have had the know-how.
Nothing makes me angrier than the person who sees John and says, “He’s a high functioning Down syndrome child,” as if that is the reason he has done so well. John has worked for this success, and he deserves the credit. He takes vitamins which ensure that his body and mind stay as healthy and wise as intended. Additionally, he is an NACD kid, backwards and forewords; his mind never stops. He does his program with his dog when I am busy! He asks for his program before he’ll ask for the reward. He is so smart that I find it hard to keep up with him. He’s a little tease, and he never fails to get a laugh from John Jaquith. We do struggle with speech. He says almost every word, but sentences are hard. Due to this, sometimes we underestimate him. John Jaquith knows, and thanks to him, we are encouraged to demand more, and we never fail to get just that-lots more.
So, here we are, proud to be an NACD family. John’s brother Clint, who has a degree in Business Agriculture and a wonderful job, decided to return back to school to become a teacher because he wants to make a difference. I look at everything differently now. I see children who are struggling and wish that I could help them all. A little seven-year-old with Down syndrome visited us recently. Our school district had put her in Special Ed classes, and she still wasn’t being taught to read. Her parents had been told “she’s doing all she’s capable of doing.” I showed her mother how to teach her to read, and before she left my house she knew several words. Thank goodness my child’s welfare is in NACD’s hands. With them we have found our silver lining.