Thoughts on Having Nephew with Down Syndrome
By Pat Goltz
My sister Becky told me after she got married that she never wanted to have any kids. I was disappointed. But she changed her mind. She planned four. The youngest is Timothy. He has Down Syndrome.
Becky called me within three weeks of Timothy's birth to tell me about it. Unlike most parents I have known, she took no blame for his condition. Instead, she told me right away that she would help him be the best he could be. Since I homechooled all seven of our children, I pledged to help her with ideas. I was intensely jealous that I didn't get to be directly involved. You see, they live over a thousand miles away.
Years earlier, I had read the book Children of Hope Children of Dreams by Dr. Raymundo Veras. I believed even then, before I read the book, that children with Down Syndrome have great potential. So did the parents of Dr. Veras' young patients. They begged him to do something about it. Dr. Veras was associated with Glenn Doman of the Institutes for the Achievement of Human Potential, located in Philadelphia. I had known about Glenn Doman's work for some time. Reading Dr. Veras' book was very, very exciting to me. I have always believed that all children have far more potential than we give them credit for.
They call these youngsters "Veras Children" and so will I. Dr. Veras proved beyond a shadow of a doubt that children with Downs are not mentally retarded. Whatever they are, that is not their problem. Dr. Veras worked with many different patients, and at one point, he asked Glenn Doman to come for a visit. He showed Doman only one child: a little girl age 3, who could read three languages and play the violin. Doman said that it only takes one to disprove a theory like the one that Down Syndrome causes irreversible mental retardation. He accepted this idea that Dr. Veras tried to promote, and educating children with Downs has been part of the Institute's programs ever since.
At some point, I had also had the opportunity to observe a child with Down Syndrome in a Montessori classroom. I saw a child who functioned just as well in that setting as everyone else. You couldn't tell by watching him that he was "different." I have known for some time that the Montessori method is superior in many ways from other educational methods. At this writing, I have plans to put more about this on the web site, but I have not yet done so.
With this knowledge already in my possession, I learned that my nephew had Down Syndrome. I felt that it would require an unusual educational program to teach him to be mentally normal, but that it was not beyond the realm of possibility. What I learned in the next few years totally changed even my thinking about Down Syndrome.
Becky immediately put Timothy into a program of early intervention. She told me quite early that Veras kids tend to have a very laid back attitude. They don't care. When most children will be very busy discovering the world, the Veras child is content to lie there lazing and relaxing. They don't give their mothers the same feedback. This means that many mothers assume they are retarded, and this becomes a self-fulfilling prophecy. I told Becky that I thought what she would have to do is to make sure Timothy cares. By putting him into early intervention, she did make sure he cares. But there were several problems with the program he was in. The first and foremost is that because the people who design the programs think Veras kids are by nature mentally retarded, they make no real attempt to help them develop their intellect. The only intellectual stimulation which Timothy got was the speech therapy he received. This was enough, however, together with other things that were done by the family, which I will get to in a minute, to cause Timothy to develop outstanding verbal abilities.
Glenn Doman has a series of charts for children. The charts evaluate children on the basis of a number of skills of intellect. I was particularly interested in the ones concerning speech development. I had already learned that children can be taught speech at a much earlier age than most people think. My younger children had speaking vocabularies of anywhere from two to ten words at four or five months of age. This is because of the way in which I worked with them. I learned that the main problem children of this age have is that they cannot pronounce words very clearly. This doesn't mean that they don't mean to say certain words, however! (For this reason, people have started teaching infants a little sign language, because their ability to make signs with their hands happens at a much earlier age, which means they are less frustrated and can communicate better.)
I have learned that motor skills are always the last to develop. The intellect develops first. Motor skills come from the exercise of the intellect. When it comes to saying words, the child will practice and practice, using her ear to hear how well she is pronouncing words. She knows what they are supposed to sound like. Getting a tongue that never got exercised until birth to produce them is another matter. For the child with Down Syndrome, this can be aggravated by the fact that the tongue is often much larger, which makes speech much more difficult. This is the reason for speech therapy. Regardless, Timothy had a reasonably large (dozens of words) vocabulary by the time he was a year old, and he started stringing together two word phrases by eleven months. So I took this fact and compared it to Doman's chart. Doman divides children into three groups. There is a lower group, and then an average group, and then a superior group. Here is what astounded me! The superior group was speaking two word phrases by thirteen months, and here Timothy was doing it by the time he was eleven months! This same early acceleration stayed with him. He developed a phenomenal memory for dialog very, very early. He memorized books, poems, nursery rhymes, hymns, the liturgy (both congregation and pastor parts), and the scripts of movies. By the time he was a couple of years old, he knew dozens of nursery rhymes and songs. By the time he was three, he would hold involved conversations with people. I have in my possession a videotape of one such conversation. Unfortunately, it needs processing before I can put it on the web page, but I will do this as soon as I can find the equipment! By the time Timothy was three and a half, his speech development was equal to that of a five year old! Do you have any idea what that means?
Yet, when Timothy went for evaluation, the therapist said he had echolalia. "What is echolalia?" you may ask. Echolalia is what parrots do. They don't understand a word they are saying, but they can say words clearly. What nonsense! It made me angry that the therapist would say this! She was denying the clear evidence before her ears. Is it any wonder we continue to believe the myth that Veras kids are doomed to mental retardation? Therapists who work with them really ought to know better!
I had the opportunity to spend some time with Timothy when he was barely three. It was a very exciting time for me! In particular, I was struck with his reasoning ability. Two examples will suffice to illustrate the way he was thinking at that time. The first incident occurred one afternoon when I was playing the organ. Timothy's dad brought him to stand by me and watch. (Timothy didn't really walk until he was four, as I recall) Soon, Timothy asked me to hug him. This was hardly surprising; this kid loves to be hugged! But what astonished me was what he did next: he turned around on my lap and proceeded to play the organ. What he wanted was to be allowed to sit on my lap so he could reach the keys, because he was so tiny, and he reasoned that if I was willing to hug him, he would have that opportunity! The second incident happened a day or two later. At the time, Becky had put him in an enclosed fence, and I came into the room. Again, he asked for a hug. Guess why he wanted one this time! He wanted out of the fence, and he reasoned that if I took him up to hug him, he would be out of there! Of course, one might ask why he didn't just ask in both cases for what he really wanted. I suppose that he had decided that his request was unlikely to be granted. The fact that he was able to see a means to another end and reason through truly astounded me. Maybe it shouldn't have. After all, I have this "attitude" that the connection of mental retardation to Down Syndrome is a myth. However, I think it is understandable. You don't really give up a pet notion of society without a lot of thought. And remember: I had already raised seven children past this point, so I had a pretty good notion of what three year olds tend to think.
When Timothy was a bit older, I once more had an opportunity to spend some time with him. By this time, the therapists had pretty much seen to it that Timothy didn't want to achieve anything at all. How did this happen? Well, for one thing, the therapists always insisted that he spend a productive hour in therapy no matter what. This resulted in Timothy basically rebelling against therapy. It isn't at all surprising. Children aren't always able to work for an hour no matter what. Sometimes they are tired or not feeling good. We don't do that to adults; why should we force children to do that? If an adult loses concentration at work, she may well be allowed to take a break. Adults usually don't have to ask permission to go to the bathroom. We make schoolchildren ask permission. In many ways, our rules for children are much more rigid than they are for ourselves.
We wouldn't dream of forcing an adult, against his will, to be in a certain building for several hours a day, week in and week out, but allow the adult to choose where he wants to work with only practical constraints. Why do we do this to children? I will talk a lot more about that elsewhere, but right now I want to get back to the subject.
I have a son who had some sort of learning disability. I discovered that he wasn't as easy to teach to read at 4 1/2 as the other children had been. So we had him tested extensively. We found out some specific things, but what interests me for the purposes of this discussion was how he behaved during testing. At first, he was willing to work on the tests steadily. That is, until he discovered that the psychologist had a very interesting doll in the cabinet, and she would let him play with it. From that point on, the doll proved to be a distraction. The psychologist decided he had what we now call attention deficit disorder. That proved to be unadulterated balderdash! How could a professional reach that conclusion? That's easy: prejudice that comes from her training! She never saw what the problem was. But did he have this problem? Judge for yourself.
A scant handful of months later, I began to teach him to read again. He was only five. Each day, we worked for an hour and a half. Not once did his attention ever wander. When we quit, it was because I was tired! So what did I do differently from Timothy's therapists? That's real simple! My son got attention when he was working on learning to read. I always made sure that we stopped before he really wanted to. This left him hungry for more. He continued to work willingly and productively with me daily for an hour and a half for six months. At the end of that time, I felt he was ready to read on his own, and I turned him loose. To make a long story short, he is now an adult, and learning is still a challenge, but he has almost completely overcome his learning disability. He now can read texts with difficult medical words, and read well enough to pass courses. He is a paramedic, and wants to study to get an RN so he can ride with the helicopters. He is self-sufficient, productive, and teaches classes in his field.
I think that at first you have to make Veras kids work. But that stage doesn't last long. When they reach the point where their curiosity and desire to learn is aroused, then is the time to start cutting them short. The therapists should have made sure to stop just before Timothy was ready, each and every time. Had they done so, Timothy would have been an eager learner and never would have reached the point where he rebelled against therapy. Another thing to bear in mind is that if they designed their therapy to appeal to a youngster who is mentally retarded, it well could have been very, very boring to Timothy. But they never saw it because they had this mindset that came from their training. I think it is criminal the way we underestimate all children.
So by the time I spent time with Timothy this time, things had gotten so bad that he never wanted even to speak in complete sentences! This was quite a reversal for a child with such astonishing verbal development. One particular situation will suffice to show what I mean, and what I did about it, and further, what the results were. But before I tell that incident, I want to back up a minute and talk about another of my sons. This is my youngest son. This particular child had been born at home (my last three were all born at home), and had shown no signs of life for eleven minutes. I was concerned that he might have brain damage. It turns out that he had nothing of the sort. In fact, the reality was truly astonishing. I gave each of my younger six children the opportunity to reach and grasp an object after birth. All of them did it except the one with the learning disability (he was two days old when he did it) and this youngest. One day, when he was about four days old, I laid the youngest in bed on his back, with the cradle gym right over his head within easy reach, and left the room. I came back a few minutes later, and saw that he had his hand around one of the red rings. As soon as he saw me, he jerked his hand off the ring! I learned from watching him that he had decided at that early age he didn't want me to know what he knew! This continued to be the case for quite some time. I mentioned earlier that my younger children all had spoken vocabularies of several words by the age of four of five months. Because of my experience, I was able to do more with my youngest, and he had a spoken vocabulary of a dozen or so words by the time he was four months old. However, as he got older, he stopped talking entirely, and would not make any noise other than to cry when he wanted something. This went on until he was well over a year old. I didn't know the reason for this, so I just bided my time and watched. One day when he was about a year and a half, I happened to stand outside the room where he was. He was not aware I was there. He was talking to himself in complete sentences! I was astonished, but I didn't say anything. A couple of days later, he cried to be breastfed. So I picked him up and I sat him in front of me, and I said, "We have a really good relationship. We understand each other very well. I know what you need or want when you need or want it, and you know that I know this. But you need to learn to speak English, so from now on out, you won't get whatever it is you need or want until you ask for it." Within three days, he was talking a blue streak to me.
Now back to Timothy. Timothy was around four or five years old at this time, and he had completely stopped talking in sentences. He would use two words if he could get away with it, and if only one word would do, he used one word. One day, I was alone in the house with him, and he came in the room and said, "Water." I knew he wanted a drink. But I said, "What about water?" He said something like "Want some water." So I said something like, "What do you want the water for?" And so on. By the time I was finished with him, he said, "May I have some water please?" He got his water. Of course, I told Becky about this, and I encouraged her to do the same. Timothy didn't continue his one-word dialogs for very long after that.
On another occasion, I visited the preschool Timothy was attending. He was about 3 1/2 at the time. The preschool was specifically intended for developmentally delayed children. It upset me a lot that the only equipment in the room was intended for helping children with their motor development. Once more, the only intellectual stimulation Timothy got was his speech therapy. In spite of this, Timothy was ahead of his "normal" peers in counting ability, and could read most digits and most letters of the alphabet. Why? Simply because he got to work on these at home. This was just mother doing things with him that no therapist recommended. Another thing the family did was they took him everywhere. He got many, many opportunities to interact with other people. There were three other children in the family, so Timothy was exposed to plenty of intellectual stimulation, especially the kind that produces language development, in his home.
So do I think that children with Down Syndrome are doomed to mental retardation? I do not! I think the whole problem is that Veras children have a different learning style! They are not as adaptable as most children, so what will work haphazardly with most children won't work with them. But if we set up the proper environment, there is no reason in the world why they cannot achieve. I think what we do in the name of educating most children is criminal. With Veras children, it is unforgiveable.
Now, having sald all of what I have said so far, I am not satisfied with what Glenn Doman does with these kids, either! I will explain why.
Doman's program is almost entirely geared toward rote brute force memorization of many facts. There is no provision whatsoever for teaching any reasoning skills. Doman's reading program is all rote look-and-guess. It relies on a child's phenomenal memory to teach reading. There is a time and a place to exercise phenomenal memory. I believe it is not when teaching a child to read. I think you should teach an infant phonics. Is that possible? You bet your booties! Infants are more sensitive to phonics than older children, because they are putting together their speech phonetically. Why not capitalize on that? And why should we teach phonics? We should teach phonics because it is the most efficient and most useful method to use to teach reading. But we should not only teach phonics because of the fact it is the best way to teach reading (is there any other way? I think not!) but for a variety of other reasons as well. You will notice, for example, that this web site is multilingual. I have designed the multilingual materials on this site with very little outside help. The Spanish translations in the pro-life section were done by a woman from Ecuador. I had access to Bibles in many different languages to use for copying onto the relevant pages. BUT. I did my own research on all the pro-life links in other languages, and I was able to proofread all of the material myself. Why? Well, for one thing, I read fifteen languages fluently if I can use a dictionary. I can read in any of those languages at approximately 300 words a minute while using a dictionary for all words I do not know. Why can I do this? Well, I was taught to read with phonics, and I think that is why! The skill I learned in analyzing words can be carried over into any language at all! So we should teach phonics because it teaches some basic thinking skills that are useful in foreign language study, even for a person who was monolingual as I was until high school. But even that isn't the only other reason for teaching phonics. The most important reason of all for teaching phonics is that (and pay close attention) it teaches a child that the world is an orderly place that conforms to physical laws and that it is worth the effort to learn about the order of the world, and further, it teaches by implication that the order in the world was created by an infinitely loving God Who put such astonishing beauty and order in the world, and that it is a feast to partake of that beauty as a way of life!
So when we refuse to teach children phonics, we are robbing them of the very training in the skills that make us distinctly human: our ability to reason and to discover.
So that is why I am unhappy with Glenn Doman's methods!
Yes, we need his methods. But we need so much more!
It goes far deeper than just the issue of phonics. Every subject should be taught from the standpoint of reason. This also and especially includes mathematics and science. It isn't enough to teach a young child to name three hundred animals on sight. He ought to know about the bodies, the living habits, etc. of these animals. He ought to know a lot about them.
And should we be teaching phonics and mathematics and science to Veras children? You bet!
And before leaving this consideration, I should also like to comment that the same criticisms apply to the Suzuki method for teaching violin which Dr. Veras and Glenn Doman have incorporated into their programs. While this method can teach children to have perfect pitch, at least in first and third position of the left hand, and can teach children to imitate the musicality of older performers, and can teach children a tremendous capacity to memorize music, it does not teach children to read music, and you know what? They ought to be taught to read music just as they ought to be taught to read their mother tongue! I started learning to read music when I was three, and I see absolutely no reason why most children shouldn't be taught to read music at that age. Furthermore, I think we should be teaching music theory at a very young age, and I don't just mean teaching them to spell words with notes!
So we now have a situation where the general public believes that Down Syndrome is a sentence to mental retardation, in spite of evidence to the contrary (including the example of Chris Burke, the actor in Life Goes On), and because of this, people who are unwilling to raise a child who is supposedly mentally retarded are aborting these children in droves! It is my understanding that 98% of them are being aborted! What a waste! These children have wonderful lessons in unconditional love to teach us. They love unconditionally, and they teach us to love unconditionally. Why are they put among us? So that we will learn to love! And above all, the world needs the lessons in love they were sent to teach! So if there is any way we can counteract the myth that they are doomed to mental retardation, we need to counteract it, because we need them among us, and the parents who are most likely to abort them and kill them before birth are most in need of this lesson. They have thrown away a wonderful gift from God, and they have no idea of the riches that they have thrown away along with this gift. Should we be in the business of throwing God's gifts on the trash heap? I think not! Veras children are wonderful human beings. It is time we as individuals and as a society learned to accept them into our hearts. They do not deserve a death sentence for being different. We need to protect and cherish them. So go and do thou likewise.