JOURNAL OF THE NATIONAL ACADEMY FOR CHILD DEVELOPMENT
1999, Volume 12, No. 2
Down Syndrome
Perspectives: A Message to Parents of Down Syndrome Children
Robert J. Doman, Jr.
In 1972 I sent my first Down Syndrome
child off to her first day of school, in regular class, in
a "normal" public school with "normal"
expectations, and no special services. Linda was entering
first grade, having spent two years with me at the George
Crother's Memorial School. Linda entered 1st. Grade at the
head of her class. I was the Clinical Director of United Cerebral
Palsy in Delaware County, Pennsylvania and of the George Crother's
Memorial School, which was operated by the organization. Linda
was one of the firsts of thousands of children with Down Syndrome
with whom I have worked over the past thirty years.
Back in 1972 it was not unusual for
a DS child to attend normal school, it was unheard of. As
a matter of fact not many DS children attended school at all.
This was back before the establishment of the Right to Education
Laws. Pennsylvania was the first state to establish a Right
to Education law, and provided the model for the federal law
that was to follow. Prior to the establishment of the Right
to Education Law school attendance was based upon IQ scores.
If the child's IQ tested in the Educable range the child was
permitted to attend special education classes. If they tested
below that level, in the Trainable range, it was determined
that they would not benefit from an education, and were denied
services. Organizations such as the UCP organization of which
I was a part and which used private funding were the only
places that provided services for these children. Back in
the early 70's I received some rebukes from the State for
educating trainable children, and for providing too much therapy.
In the 1970's the perspective of the
educational and medical community on DS was based almost entirely
on individuals with DS who had spent their lives in institutions.
There were virtually no DS individuals who had received any
educational opportunities whatsoever. It was at this time
that I was in a Master's program in a prominent college that
was said to have the best special education/educational psychology
program in the country. It was also at this time that I walked
out of the program when the head of the department announced
her dream. Her dream was to create a special educational program
based on what she called the "European Model". The
European Model involved training the DS children to sweep
the streets with brooms- that was the end of my participation
in that Masters program.
The educational and therapeutic opportunities
being afforded children with DS were based on what the world
thought the children were capable of. The world felt that
they were not capable of anything. This obviously led to a
self-fulfilling prophecy. Zero opportunities - zero results.
The past thirty years have been spent trying to determine
what really constitutes an opportunity for children with Down
Syndrome.
Today the opportunities being afforded
children with DS have changed rather dramatically nevertheless
we still have a long way to go. We are still engaged in the
process of determining what constitutes a meaningful opportunity.
At this point we have identified some factors which we feel
are critical to achieving that goal. The critical opportunities
that we have identified include:
- An opportunity to receive nutritional intervention.
- An opportunity to be perceived as a unique individual
with unlimited potential.
- An opportunity to receive an individualized developmental
neuro-education program.
- An opportunity to grow, develop, and be educated in a
"normal," loving, nurturing environment.
- An opportunity to receive nutritional intervention.
In the early 70's I was fortunate to
meet and then work in association with Henry Turkel M.D. Dr.
Turkel was a brilliant man who had spent his career learning
about and developing nutrition intervention for children with
Down Syndrome. Dr. Turkel's U-Series helped produce significant
change in children from around the world. In the intervening
years I have had the chance to observe thousands of children
pre and post nutritional intervention, first with the U-Series
and more recently with the MSB and TNI's Nutrivene D programs.
The MSB and Nutrivene D programs are
the latest development in meeting the specific nutritional
needs of DS children, and of helping to negate the effects
of the chromosomal abnormalities. Strengthening the immune
system, maintaining good general health, and negating the
effects of the chromosomal abnormality provides the foundation
for all physiological and neurological development. These
programs should be perceived as providing the foundation upon
which education and development are built.
An opportunity to be perceived as a
unique individual with unlimited potential: Today as in the
past limited perceptions of the potentials of our DS children
have limited their opportunities. During my career educational
opportunities have undergone transformations. It has moved
from denying DS children any access to the educational system,
to admitting them into very restricted special education classes
to inclusion into "regular" classes. As the saying
goes, "We've come a long way Baby".
But, the reality is that we still have
a long way left to go. Many DS children have the potential
to achieve "normal" academic function. Unfortunately
this potential is almost impossible to achieve in a typical
special education program or in an inclusion situation. The
problem is again one of perception. The goals established
for our DS children are typically low- much too low. The goals,
however, are reflections of the opportunities being provided.
The reality is that most of our children need not only an
individualized program they need an individual program. They
need a 1:1 educational opportunity, utilizing a program designed
to fit the individual child. Being with "normal"
children is good, but in itself is absolutely not enough.
The inclusion model does not expect "normal" educational
development; it only provides the aura of normal educational
development. Having worked with thousands of DS children from
around the world for thirty years I have perhaps a better
perspective of what "is" than most people in the
field, I also understand how easy it is to accept anything
that looks "normal". But, the reality is that our
DS children are unique, they do have specific needs which
are determined by their individual strengths and inefficiencies,
and that they do have unlimited potential. The potential of
our DS children could be likened to a superior athlete's potential
to compete in the Olympics. Like that athlete, the DS child's
potential is only going to be achieved through very intense,
very specific training, and will require an exceptional commitment.
The reality is that most athletes are not going to reach the
Olympics, nor are most DS children going to achieve "normal"
function. But, where most of our children ultimately function
is going to be a reflection not of their innate potential,
but of the opportunities which we provide for them, and commitment
to the realization of potential.
An opportunity to receive an individualized
developmental neuro-educational program: Today a developmental
opportunity for a DS baby is typically defined as enrollment
in an early intervention program. This supplies a special
education teacher once a week or every two weeks for an hour,
physical therapy once a week for a half an hour and a like
amount of speech and occupational therapy. Many parents feel
very fortunate to receive so much help. Most of our families
at NACD however perceive this level of intervention as sorely
lacking in both quantity and quality. The development of any
child is determined by the amount of specific appropriate
input, which the child receives. This is true whether we are
talking about a "normal" child or a DS child. When
we are dealing with a child with a developmental problem such
as Down Syndrome their specific needs are such they require
an inordinate amount of specific input if they are going to
achieve anything close to their potentials. At NACD we have
been designing home based programs for DS children for twenty
years. We have been fortunate to work with the "creme
de la creme" of parents—often the brightest, but
not necessarily so, often well educate but not necessarily
so, often with a lot of time to spend with their child, but
not necessarily so—but universally the most dedicated.
Our families have understood that if their child is to be
given a real opportunity to achieve their potential that they
the parents were going to have to assume the primary responsibility
for that development and education. Traditional treatment
has two major flaws; the first is that typically so little
of it is done that the feedback of the therapists is so limited
that they do not have an opportunity to find out what works.
More often than not the same procedures are used over and
over with the same limited results. Problem one is too little
therapy is being accomplished. Problem two is that the wrong
procedures are being used. An opportunity cannot be defined
as receiving ineffective therapy once or twice a week, but
by receiving very specific effective therapy many times per
day.
NACD's neuro-developmental educational
and therapeutic programs have been developed and modified
over thirty years and through our experience with over 20,000
children. Each of these 20,000 children have received and
implemented our comprehensive home based programs. We are
always collecting developmental and education methods and
techniques, always looking for better ways, and always trying
to determine what will best fit an individual child. NACD
offers an eclectic approach (we search throughout the world
to find the best techniques and methodologies so as to develop
the most individualized programs possible). NACD empowers
parents (we work to educate parents and provide them with
tools that make sense and work for their children). NACD functions
from a parent's perspective (we are constantly looking for
better ways, change is never fast enough or far enough and
we want to see change yesterday). NACD is neuro-developmental
(The basis of our educational and therapeutic intervention
is a thorough understanding of neurological function and development.
Effective intervention needs to be neurodevelopmentally based,
not skill based.). NACD is family centered (we believe that
the parents and siblings are the most knowledgeable and most
invested people in the DS child's future, and that they are
in a unique position to influence the child's future).
Getting to the Olympics is not easy;
it requires dedication, hard work, commitment and the best
available expertise.
An opportunity to grow, develop and
be educated in a "normal", loving, nurturing environment:
When I have discussions with my families with "normal"
children regarding schools, class placement, neighborhoods,
associations, etc., etc. the quest is generally one of locating
the best opportunities, and the best models for their children.
This perspective is every bit as true for the DS child as
the "normal" child. If the goal is to achieve normal
function, or to come as close to normal function as possible
we need to find the best environments, the best models possible.
A few years ago I was seeing children at our office in New
Jersey and I had one of those days that hit you right between
the eyes. It was in the Fall of the year and I was seeing
families that I had not seen since the previous Spring. In
the morning I saw a family with a twelve-year-old DS child
who told to me how they had attempted to put him into summer
camp. This child functioned well, but still significantly
below normal levels. He had been home schooled, and involved
in "normal" programs, everything from Sunday School
to Karate. Never having sent the child to camp the family
was anxious and decided that they would send their son to
a special needs camp where he would get more supervision,
and where he could compete successfully, even though he had
experienced no problems in his "normal" environments.
Upon arriving at camp the child got out of the car looked
around at the other children and immediately got back in the
car and said, "I don't belong here." He did not
attend camp. That afternoon I saw another family with a DS
son of thirteen, this boy was in fact functioning above the
child I had seen in the morning. This second child's family
had worked very hard with him, they worked program in the
mornings, and sent him to a special education class in the
afternoon, he participated in Special Olympics and other generally
associated with other special needs children. His family had
also decided to send him to camp for the first time, but they
decided it was time to try a "normal camp". Upon
arrival at camp they had the same experience as the first
family. "I don't belong here." He too, did not attend
camp. The jobs of parents with DS are not easy, there are
decisions to be made on a daily basis that are tough. There
are certainly no absolutes, and each family needs to look
at the opportunities that exist within their family, and community.
In general we want to see our DS children in what the government
refers to as the Least Restricted Environment. Our definitions
of that may vary, but the concept is the same. We need to
aggressively seek the best, the most "normal" placements
and environments for our children.
Perhaps nothing is more important for
our children than for us to have high goals, to treat them
normally, and demand that they behave normally. Possession
of normal social skills as adults needs to be at the top of
the priority list. Where do these skills come from? Primarily
from adults with good social skills, whereas they generally
do not come from other children. One of the most ludicrous
things I hear parents being told is that their young children
need to go to school so that they can learn social skills-
as if any three year old has the skills with which to be a
good model. What was wrong with Mom and Dad? The vast majority
of parents that I meet certainly have better social skills
than most children, be they eight or eighteen. A difficult
reality for the child or adult with DS, is that their behavior
and to a certain extent their social skills need to be better
than normal.
Children with DS have tremendous potential.
Potential that is limited only by our expertise and commitment.
With DS children in high school today that are functioning
at the level of their peers, these children show no signs
of slowing down, and are looking at bright futures. Our DS
children—be they a three year old who is reading or
a sixteen year old with superior processing skills and academic
function—are the reflection of extreme efforts and dedication.
I would love to communicate to parents of DS babies, babies
who may look great, and may be functioning "normally"
at six months, that it is going to be a cake walk—but
its not true. A lot of hard work lies ahead. The future looks
better than ever, we know so much more than we did just a
few short years ago, and it is getting easier. But, the reality
is—the more responsibility you assume as parents, the
better job you do at providing your child with opportunities,
the better your child's future prospects will be.
Reprinted from the Journal
of the National
Academy for Child Development
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