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When there is a need to use the restroom they will say that they need to make a “bop” as an example of this kind of behavior planning.

Why is this such an important necessity? Well when children find themselves together and they become bored they will often resort to the use of words that are socially unacceptable in order to outdo each other.

When children use these words together amongst themselves or amongst others they will none the less resort to the most lowest of their vocabulary skills in order to overcome their peers use of silly words.

An example is as follows. If a group of children become silly and use the most commonly used colloquialisms to describe a bowel movement or other bodily function our kids will not only have no idea what the other children are so giddy about but the opposite will occur. Our children will only look on confused and the other children will have no idea what our children are trying to instigate when they will yell out “bop” in the most inappropriate way.

These planned behaviors begin at the earliest stages of development.

Children have the capacity to change and modify their cognitive function at every stage of their development.

The fewer obstacles we place in their paths the better the chances of success.

Professor Reuven Feuerstein’s basic assumption is that children are beings with open systems, accessible to change throughout their life span.

Further stated he continues, that it is generally agreed that there are optimal periods of development and that they preclude the capacity of all human beings to change under specified conditions of remediation providing quality and quantity of intervention matches the persons needs.

Utilizing this method of affecting changes in a child’s life means that we need interpose ourselves between a controlled, selected, and appropriate stimulus and the child with the intent of mediating the stimuli of the child.

Simply put it is the process that is important not the result. Even though we may have an intended objective we must develop methods that will allow the child to remain within the process until that is mastered without shortchanging the time required by moving too quickly toward the result.

If a child needs to spend more time on a project or a segment of an assignment do not halt the process merely because you are becoming frustrated and because you are out of patience to continue.

It is important to prepare a child for a situation by properly preparing them with the tools to succeed and it is also important to afford a child the time to succeed independently by allowing enough time and parental patience for that to happen.

Anticipating a behavior;

Many years ago our daughter Suri would join us on family outings to visit bubby and zaide. When we arrived at bubby and zaide’s house Suri would not get out of the van. We coaxed her, we bribed her, we all took turns and nothing would get her to budge until she would finally decide to join us. This was not only frustrating and time consuming but did not teach any good midos or behaviors.

So by anticipating the behavior we devised a plan that seemed to change her travel habits.

Before we left our house we would give Suri a bag or a package and tell her it was an important delivery for bubby. We told her that bubby was anxiously awaiting whatever it was that was inside the item she was charged with delivering.

When we arrived at bubby and zaide’s house who was the first one out of the van and into the house?

When Suri began school her first para was having a problem getting Suri to cooperate by leaving the playground after recess. Suri would remain for up to 10 minutes after everyone was already in the building.

After hearing this story about the trips to bubby and zaide the para asked Suri if she would like to serve as the door monitor by holding the door open for all of the girls as they returned to the building after recess. She explained that this was an important job and not just for anyone but that the teacher wanted someone who would be responsible and reliable. When the next recess was over who was the first girl off the playground, holding the door?

Involve your children in the process and avoid the trap of being only goal or objective oriented and anticipate the behavior. This will increase patience and simultaneously develop acceptance and success strategies.

This sums up the concept.

School is a place where a child is sent to fulfill the educational wishes of the parents and schools often forget this one very important point. The schools with whom we have dealt for the past two decades have long since abandoned this reality and embraced the concept that ‘it whatever the administration has decided that is of greater priority.’

Educating all children with disabilities in a regular classroom, regardless of the nature of their disability is the primary goal and objective of the inclusion concept.

This does not mean send the child and their disability to school and let the school figure out how to make it succeed or fail. What this means is develop a set of goals to achieve over the course of a day, a week, a month, several months, and over the course of the school year.

Next develop the methods that will best accomplish these goals and objectives.

The reasons that this system works is precisely because the school setting is providing all students enhanced opportunities to learn from each other’ contributions.

If you look back over your own education you will see that it is usually the events and conversations that happened in the playground, lunch area, and after-school programs that more shaped your social life and social appropriateness than any of the classroom lectures or homework reviews.

In order to best integrate a child into a classroom the primary objective must focus on the person who will be participating in the class with a disability. This focus should be to improve the life of this person so that they function as a socially and age appropriate participant at all times. That is as a parent you must make your wishes known from the very beginning that you have no intention of making your child a valedictorian of the Down syndrome set.

In the orthodox Jewish schools it is common for the administration and the faculty to be so academically oriented that they will continually come back and say things like, “but she should be doing so much more academically,’ or ‘it’s just not fair that we aren’t giving her more to do,’ etc.

The reason for this is that there is no room for typical children to be sitting in the classroom merely to pick up tips and hints as to how to best be accepted by their peers. This is an alien concept in this milieu.

In order to best facilitate these inclusionary methods it is first very important to provide the proper sets of supports for the regular teachers, administrators, et al, by providing the time, training, teamwork, resources, and strategies that will be necessary to properly integrate such a program in the school.

You must assure the administration and the faculty that you have all of the above either available or a better system is to solicit the school to participate in locating those parents and professionals who have the skills to provide these supports.

Primary to the inclusion process is that the “Inclusion” student follow the exact same schedule as the typical students in their grade level.

In order to best implement these schedules the “Inclusion” student should be in all age appropriate academic classes. This is accomplished by developing an adaptive curriculum that is designed to be a parallel set of objectives that allows for full participation with a minimum of obvious distraction.

This is the job of a special educator whose specialty is adaptive curriculum. This teacher/consultant can also develop and help implement curriculum for extra curricular activities including but not limited to art, music, physical education, field trips, assemblies, productions, study groups, etc.

These students should have complete access to all areas of the school including the library, cafeteria, playground along with the typical students in the school.

Rather than creating a friendship circle it is better to create a circle of friends. That is not to say that a community organized fellowship to provide chesed is not a good thing because it most certainly is however more important is to develop a circle of friends who are not in the students life for a few assigned hours but rather for life.

Friends are so important to children who have disabilities and handicaps because one of the causes of early adolescent depression is ‘silent telephone syndrome.’ Children with Down syndrome who become teens and observe their peers receiving phone calls and invitations to participate in social events begin to feel excluded. Desperation morphs into depression and depression only gets worse.

“Inclusion” should foster friendships that will be lasting between typical students and special needs students.

Thus the presence of the special needs child in the entire educational process has a positive impact upon the typical children in their classes in that it fosters the understanding of human differences at an early stage of life.

Ask yourself how many children with disabilities did you have in any of your classes in school when you were growing up. The answer will directly correlate to how you feel about your child being exposed to a special needs child in his or her classroom.

Children do not have to be taught how to accept another child no matter what their challenges. Difference based bias is taught it is not innate.

It is extremely important that the school take the parents wishes seriously. As mentioned above many schools have a difficulty with this since there is a territorial protective behavior on the part of the administration with the school and the teacher with the classroom.

And finally in order to provide the best inclusionary education it is extremely important that everyone who will be involved with the teaching of the special needs student be provided with a current IEP (Individual Education Plan).

There are many key participants who help develop and IEP and we will be discussing what an IEP is and who the key team members are who input this document in the coming weeks.

Schools need to be reassured as to their roles as well and yet it is important to collaborate together as a team, parents with teachers, therapists with teachers, parents with administration, paraprofessional with classroom teachers, therapists, and parents.

As mentioned above careful planning and an equal division of responsibility is the key to success. It should not fall entirely on the parents to provide all of the services and the school should also not expect to be so burdened.

Teamwork and collaboration are the two most important methods that when employed lead to success.

“A mind is like a parachute, they only work when they are open!”

In the public schools the term “Inclusion” refers to a concept that allows all children of all races, religions, and creeds as well as handicaps and disabilities to matriculate in the same classrooms without regard for their unique differences while simultaneously providing all of the supports to make this successfully happen. It is a school wide philosophy that offers everyone an opportunity to fully participate within the neighborhood school that they would have otherwise attended if it were not for the fact that they were born with some unique difference that at one time would have excluded them.

In the orthodox Jewish school system it is basically the same conceptually but the common denominator is the children’s specifically orthodox Jewishness as students.

The various levels of acceptance allowed for within the orthodox Jewish schools often depends upon several unique differences. These are the foundation for either full participation within this method of acceptance or not.

Helen Keller once said, “it is not being blind that is the true life challenge but rather the lack of vision.”

It is exactly this lack of vision that is the barrier to a “barrier free environment.”

Principals and administrators are exceptionally creative when they want something and equally if not more so when they do not.

When our daughter first applied to her neighborhood elementary school she was merely progressing from having spent two exceptionally successful years in a fully included pre 1A class in the Pre School. Her ascent to elementary school should have been a smooth, effortless, and seamless transition yet it was not.

The school began by excusing themselves from allowing our daughter from riding the bus with all of the other children. The creative excuse was that the insurance does not cover such special cases. “What if she falls or is not wearing her helmet?” we were asked. “But she does not have falling issues and she has never worn a helmet in her life other than to ride on the back of a bicycle,” we incredulously responded.

After a quick check with the Board of Education we found to our delight and to the disappointment of the School administrator that his creative exclusionary tactic was exactly that. We also discovered that it is against the law to exclude any child from fully participating visa vi an insurance policy.

Several days later the administrator found out that our daughter was on the bus and called indignantly inquiring, “didn’t I tell you that our insurance doesn’t allow for your daughter to ride the bus?”

So with our daughter securely included in the bus transportation from home, which allowed her to travel to and from school, we began our eight year battle to have her fully included in the class and school.

The school’s resistance was often based upon such simple excuses as the teachers are barely qualified to teach the typical children in the classroom to we first have to locate a teacher willing to take on such a difficult situation.

If the teachers themselves are treated the way they are spoken about in these schools then this is one of the reasons that there is a resistence to acceptance and inclusion.

We found that it was often the teachers who were asked to be more professional and put up with administrative abuses rather than the other way around. The administration was not always professional with the parents as the faxes that I have saved from more than a decade ago indicate.

In reviewing those faxes we were commanded not requested to comply with administrative wishes. We still offered to fully participate in developing a fully inclusion-any/visionary educational program. To that end we brought in Dr. Stephen Levy, who served as the very first inclusion principal in the New York City Board of Education and is considered one of the top 5 experts in this type of education in the country.

Dr. Levy’s school had a population of over 1000 students and a 10% population of fully included students. Steve’s goal was to speak with every single student at least once each and every month. And he succeeded for the entire duration of his tenure. This included the “Inclusion” students as well.

Dr. Levy and I made several presentations together for the State of New York Department of Special Education annual conferences on the concept of inclusion within the orthodox Jewish school systems. These sessions were always well attended and well received. Our information and concepts were based upon our participation in over 15 separate orthodox schools who had fully included children within their classrooms up to that time.

Dr. Levy made many suggestions that would have allowed for an expanded fully inclusion-any education system in our daughter’s school.

One of the great advantages to having a special needs child included in the classroom(s) is that there is an increased likelihood that there will also be an occasional special educator who will visit the classroom.

One of the significant problems facing the classroom teacher today is their inability to find and identify the silent segment of educationally challenged students in their classroom. And if they do stumble upon a problem finding or developing a solution is even more difficult. So often these children go undetected.

With the introduction of Special Educators to assist in developing the adaptive educational methodology, we felt that the school, by taking advantage of this offer for inclusion would afford the classroom teachers an opportunity to improve the overall level of pupil success.

When the special educators begin to observe the classroom for the purpose of providing insight into how best to include the special needs child they will also notice certain delays or difficulties other children are experiencing that can easily overcome due to their expertise and ability to suggest solutions.

The problem was ‘lack of vision.’

The administrators, who themselves are not as secularly educated as the professionals whom we were offering were always on guard and defensive as to what could be allowed and what would absolutely be forbidden.

This barrier was always the under current of resistence and the obstacle to full success. Whenever the Board of Education would send a team out to the school everyone would go into a frenzy. This was as a result of this insecurity.

As long as we were willing to do all of the work from the outside and provide all of the supports without asking for any real changes to the classroom environment then we would be allowed to stay.

Despite the fact that the concept of inclusion became progressively more and more wanted within the school faculty which was obvious from the additional number of teachers who were increasingly volunteering for inclusion duty the program became increasingly more difficult.

The primary reason that the difficulty level continued to increase is because the entire school faculty as well as the entire community at large was beginning to see the benefits of “Inclusion,” despite the fact that the administration was still raising the same frivolous objections from year to year.

These objections after eight years became so annoying, to us, that at one meeting at the end of the seventh year in order to assess the following year’s classroom we came to an explosive realization, these seers have no vision and this program, as successful as it was, was doomed. This was another meeting filled with all of the sensitivities of fingernails on a blackboard while simultaneously picking away at a scab.

For eight years the school experienced a continual increase in its student body with three fully included students (all of whom had Down syndrome). However today that school has a decreasing population of students and no “Inclusion program” of any kind without a special needs program of any consequence.

This was a school who had fully 35 professionals, therapists, and specialists, at no charge to the school, who attended the beginning of school planning sessions only to find themselves being held at an arms distance and fighting to provide what could have been a school standard that would be sought out from around the globe.

We finally gave up trying to deal with the administrative fears and insecurities.

However in the course of the next few posts I would like to explore some of the more successful programs and how they are concomitantly increasing in their “Inclusion” program development.

These are schools and programs whom we can all admire and applaud for their foresight and insight.

In the beginning it is a good idea to suggest to your primary health care provider that perhaps along with the usual height and weight examination performed at each visit that a base line study be performed in the beginning to screen for lead poisoning, anemia, and thyroid function. Also to regularly check vision and hearing since the ears and eyes have slower than normal development.

A child who has Down syndrome does not necessarily require an increase in medical care but there are some things a parent and practitioner team need to be on the look out for. For example an undetected congenital heart disease has the potential to be a life threatening challenge.

Children who have Down syndrome almost all have speech delays however if you notice a severe problem with language development skills then perhaps it may be an excellent idea to follow up on a visit to the ear clinic.

Make a plan with your primary care provider to offer all of the usual inoculations that are offered to your other children. Parents have a right to know what it is that the shots are for and if there are any potential side effects.

The American Academy of Pediatrics offers a recommended set of guidelines for proper preventive immunizations offered for prevention. Check also to see what are the most recent screening tests that are being suggested and ask whether or not it is a good idea for your child to participate.

The typical case of a newborn with Down syndrome is that they are otherwise healthy. The exceptions are as follows. There is a 50% chance that a baby born with Down syndrome will also have some form of a congenital heart defect.

“One in every ten babies who have Down syndrome is born with a defect in his or her intestinal tract which may cause obstruction. This may occur in any art from the esophagus to the rectum, but the most common blockage is called duodenal atresia and this occurs in the small intestine just beyond the stomach. Babies with this sort of problem will not be able to keep down their food. Shortly after they are born, they will begin to vomit everything that they are fed. Most of these problems can be surgically repaired.”

Don’t overlook the need for good, regular dental care. Cavity prevention is the primary approach to good oral hygiene.

It is a good idea to make an appointment years ahead with a good orthodontist who specializes in or has treated a significant number of orthodontics for children with Down syndrome. It is important to note that since so many children who have congenital heart defects should always obtain a clearance from your cardiologist before embarking on a course of dental treatment to ascertain whether or not your child will need an antibiotic prior to the appointment.

“Finally, families need information. They need to have up to date information about Down syndrome in a format that is easy to read and understand. They need information about their rights and about the services to which they are entitled. They need information about becoming capable advocates for their child and information about where to get more information.”

Excerpted from the Book, “Medical and Surgical Care for Children with Down Syndrome: A Guide for Parents” by W. Carl Cooley, MD

References:

Cohen, WI et al, Down syndrome Preventive Medical Check List, 1992

Cooley, W C, see above

Pueschel, S M and Pueschel, JK Biomedical Concerns in the Person with Down Syndrome, Brooks, 1992

Rubin, IL and Crocker, AC Developmental Disabilities-Delivery of Medical Care for Children and Adults (Philadelphia: Lea and Febiger, 1989)

Wells E, et al, Paying the Bills: Tips for Families on Financing Health Care for Children with Special Needs (Boston: New England SERVE 1992)

“All of the people witnessed the thunder and lightning and the sound of the blast of the horn and the mountain smoking; and when the people saw it they fell backwards and stood at a distance. ‘You speak to us,’ the people said to Moshe, ‘and we will obey; but allow not for G-d to speak to us or we will die.” (Exodus 20:15-16)

These pasukim clearly describe something that took place but what exactly was it that took place? There was a seeing and a hearing. But what exactly was it that was seen and what was it that was heard? And how did it all happen?

Rabbi Akiva explains that they saw what was heard and they heard what was seen. There is another view that states that the people heard what was audible and they saw what was visible.

According to this second view (The School of Rabbi Yishmael) the handicapped amongst the Jewish people who stood at the mountain experienced the revelation at Har Sinai within the limits of their disabilities and within the constraints of nature as we know it.

Thus the blind could only hear what was spoken but did not experience what was seen and the deaf were only able to see that portion of the revelation that was visible however due to their handicap they were denied the accessibility to that aspect of the audible nature of the revelation.

As a result of this second opinion only the fully abled, normal, and typical could benefit from the full entire experience at Mount Sinai.

Rabbi Akiva however, offers to us that the limits of handicap were not an obstacle to fully witnessing and experiencing the complete revelation at Har Sinai. So what Rabbi Akiva is positing is that every Jew standing at the Mountain was there at that moment without any limit or obstacle to their ability to receive the Torah.

It is important to note that no place does anyone say or imply that these handicapped and disabled amongst the Jewish people were cured or healed. What is however inferred is that these individual disadvantages, limits, and handicaps were somehow overcome in order that everyone could see, hear and understand.

According to the second opinion (Rabbi Yishmael) the seeing and the hearing at Har Sinai was simply stated a usual hearing and a normal seeing rather than something that was miraculous on a level of audio and visual atypical dissonance.

Rabbi Akiva’s view is that there was a specifically different quality to the sights and sounds of the Sinai experience that defied or perhaps defined the principles of physics if you will.

There was a convergence of time and space that occurred beyond the norm that transcended all of the boundaries of the ordinary. Thus while not being cured they were enabled to fully participate. They were included.

This is our goal as a society to overcome all of the limits and constraints. Our boundaries must transcend to a level of seeing and hearing to arrive at a completely new reality of acceptance and inclusion.

It is this hope and awareness that will lead us to the ultimate and true redemption, now.

Even a minor, under the age of Bar Mitzvah, is allowed to be called up to the Torah. This provided that he understands to whom he is addressing his blessings. (Shulchan Aruch, Ora Chaim 282:3 – According to R. Karo “where a minor who can be counted as one of the mezuman [one of the quorum of three] for Birkas Hamazon).

The comparison between a minor in this case and a mentally retarded person who has achieved Bar Mitzvah is the source of this measure of acceptance.

Now this could serve as a double edge sword in terms of qualifying a mentally retarded person since if he cannot pass this simple test then in theory he would not be allowed to participate. That is strictly speaking the law. However, there is the spirit of the law as well that needs to be taken into consideration.

A person who cannot decide which direction is east towards Jerusalem is none-the-less obligated to daven.

In order for persons with handicap, both mental and physical, to become fully accepted in society we need to change direction.

First we need to develop acceptance and eliminate the dependency on the society at large to instill a sense of individual autonomy.

This must begin with the handicapable people themselves. They must resist the freight and flight reaction which fosters a sense of inferiority and weakness.

In order to escape the prison of disability we must allow ourselves into their lives. We must look beyond the differences for the similarities of Tzelem Elokim.

In the Image of G-d is an interesting if not baffling concept when discussed in the context of handicap and disability. If we are in the Image of G-d and the person with a disability is also in the same mold then what is our common denominator.

Is it indeed the ability to accept that which is difficult to accept? Is it the ability to be humble whether it is imposed or demonstrated to us? Is it the ability to mark the milestones in our lives merely because that is what we are supposed to do?

As water flows downward it fills in and covers everything in its path. It fills all of the open places, cracks, crevices, and as mentioned above cannot be contained.

And yet it is a life giving source.

It was, in fact, the result of observing the effects of the steady and constant drip of a drop of water one drop at a time that brought Rabbi Akiva to realize the greatness of Torah and as a result he decided to convert and become a Jew.

Rabbi Akiva observed what an enormous effect the steady and constant dripping of one drop of water at a time would have upon a rock over a long period of time.

The drops in question had actually worn a hole in a rock over a very long period of time. This slow methodical and very concise activity made Rabbi Akiva realize that in order for the Torah to have an effect on him he would have to dedicate himself to the Torah by beginning to slowly but steadily make a dent in his rock so to speak. He also realized that it is never too late and at the age of forty he set out to become one of the greatest Torah leaders of the Jewish people.

Rabbi Akiva began by learning the Alef Beis and through consistent and constant learning became a great Torah scholar. A real giant of the Jewish people.

Rabbi Akiva taught that among the five things that a father is responsible to teach his son is the skill of swimming. This is accepted Torah Law.

But why? What is it about swimming that should be held to be as important as for example teaching a child a vocation.

Rabbi Akiva realized that the face of the world was covered fully by a significant amount of water and the rest was a variety of land formations. So wouldn’t it have been easier to have made a ruling that everyone must be careful of the water and avoid it and thus keep everyone safe?

However the pitfall to avoidance would mean that each person would need to avoid successfully 70% of the earth’s surface. Rabbi Akiva realized that this could be an impossible task given the nature of travel and migrations, etc.

The requirement to teach a child to swim is a ruling whose purpose is to teach our children how to properly confront the tides, whirlpools, and challenges of our lives fully equipped to properly negotiate life’s foreseen and unforeseen hazards and pitfalls. This was a survival skill.

When we are confronted with a significant life challenge as opposed to life’s routine challenges we always hope that we were properly equipped to negotiate these obstacles.

Having a child born with Down syndrome is to most people a significant life challenge.

However, depending on how well we were taught to swim will determine whether or not we will sink or not. The variable is the preparation.

On several occasions fathers who themselves were orphaned at birth came to me pleading with me to assist them in ridding themselves of this child who was born with Down syndrome.

The logic to all of this always eluded me. Wouldn’t it seem that if they themselves were abandoned at birth and never knew who their own biological parents that they would want to keep this child no matter what.

The truth is that we, all of us, want to believe that this child that we have had is a reflection of who we are and where we come from. Having a baby is our way of shouting to the world that we can produce the likeness of ourselves in some small way that will reflect the best that we are and can offer.

Usually we can look at the family around us and come to the conclusion that this was simply a reflection of what G-d wanted and we can eventually come to accept it and move forward. We don’t ever come to the point where we like it and we would certainly never daven to have such a child but we will get to the point where we can accept that this is something that G-d needed to do.

When you yourself are adopted there is a hidden agenda that arises and that is this. Since the person themselves was abandoned they have nothing but imagination and fantasy upon which to base their own history. And in the absence of any real set and subset of relatives and distant relatives upon which to base these necessary comparisons there exists a need to cut and run.

After all the sum and totality of this person’s entire biology is now revolving around a child with an extra chromosome. And that is one of the most difficult challenges to face.

There is a lady, Mrs. Rosenstein, who lives in Detroit who many years ago had twins. Both children were born with problems and she was informed that neither one of them would live and not become attached to them.

Mrs. Rosenstein, to her credit asked which of the two babies was the most critical and asked to hold that baby which she did for several hours until that baby passed away.

She then turned her attention to Chaim the second twin who was also supposed to be in critical condition. Chaim today is a real Torah scholar and while he had some difficult years in the beginning one would never know it today. He is sweet and gentle and kind. He just finished his Smicha program and we now must refer to him as Rabbi Chaim.

Mrs. Rosenstein to this day says, “whose to say that first baby didn’t come into this world just for a few hours of a mother’s love?”

The education of a child must always be focused not on limitations but rather – on the contrary – on a focused yet unlimited encouragement to succeed. The goal, then, is to see what can be accomplished.

Instill within each child an attitude of success that should be implanted within each child according to their personal specific requisites.

Simcha breaks through all barriers. Simcha enables a child to overcome his limits. There needs to be a simcha at every level of learning that permeates the process of learning and growing. This is the responsibility of the teachers, therapists, administrators, paraprofessional, and staff to bring to the educational setting every day.

Mans true dignity: His sanctity, comes from his being capable of being in the presence of G-d.

Humanness consists in the capacity for a relationship with G-d.

This is not a selfish love: nor is it a romantic love. It is not that we are aware of G-d…It is rather that G-d is aware of us. Each of us is a Tzelem Elokim.

Hashem has a special love for neshamas that never tasted sin – who never mature to a level of temptation or corruption. (Jonathan Sacks, Chief Rabbi England)

Hashem gives us one good thing and that is life itself. Our very existence is the one good thing which is in and of itself good…therefore everything is subject to accidents of matter, illness, disability of mortality.(Rambam)

What is the minimum level of intelligence to be a Jew?

The Rambam points out that it will be the children who will lead us to our righteous Moshiach. And the question then is does that include all children or will there be a minimum intellectual standard to be a child who will recognize Moshiach.

For example what about girls when they become young ladies? What and how do we deal with them? Not much has been studied and or published about Down syndrome and adolescent gynecological problems. There are very few studies and certainly not many of them have any honest relevance to an orthodox Jewish lifestyle.

None the less we should still proceed with exploring estrogen replacement therapies for women who have Down syndrome. For example, is this different in young women with Down syndrome than from the general population? How will this type of therapy affect something like Alzheimer disease? Will it improve mental functioning in later years?

Or what about issues surrounding menopause? These must be different in young women who have Down syndrome but how?

How do we properly handle and prepare our young girls who have Down syndrome for the onset of menses in adolescents?

Then there are always issues surrounding marriage, motherhood, parenting, etc. While these are often only rare occurrences they do present families with issues that must be fully discussed and dealt with properly. And more importantly what will be the incidence of these kinds of relationships in the years ahead?

It is well documented that women who have Down syndrome are capable of reproduction. Several studies even went so far as to document the pregnancies of women with Down syndrome.

The results were quite interesting. For example it has always been thought that if a women with Down syndrome were to marry a man who did not have the syndrome there would be a 50-50 chance for their offspring to have Down syndrome as well.

As it turns out (Bovicelli, Orsini, Rizzo, Montacut, and Bacchetta [1982]) demonstrated that of 30 pregnancies in women who had Down syndrome whose husbands did not have trisomy 21 only 10 infants were born with Down syndrome, 18 did not have Down syndrome (one set of twins), and there were two who had spontaneous abortions.

These results clearly demonstrate that the 50% rule (Kreutner 1981) is not factual. These studies have been duplicated more recently with the same results (Rani, Jyothi, Reddy, and Reddy 1990) reporting on 31 pregnancies

Unwanted pregnancies are a legitimate concern of parents and there is a need for open and honest discussions about these concerns. Gynecological counseling should most certainly take into consideration the parents wishes with respect for their ethical guidelines.

These are all issues that need to be properly and thoroughly explored taking into account syndrome, expectations, halachic realities, and medical realities.

Bibliography:

Bovicelli, L, Orsini, L F, et al, 1982, Reproduction in Down syndrome. Obstetrics and Gynecology, 59, 13S-16S.

Elkins, T E, Hoyle, D, et al, 1988, The use of societally based ethics/advisory committee to aid in decisions to sterilize mentally handicapped patients, Adolescent and Pediatric Gynecology, 1, 190-194.

Kreutner, A K, 1981 Sexuality, fertility, and the problems of menstration in mentally retarded adolescents. Pediatric Clinics of North America, 28, 475-485

Rani, A S , Jyothi, A, et al, 1990, Reproduction in Down syndrome, International Journal of Gynecology and Obstetrics, 31, 81-86.

Minihan, P M, and Dean, D H, 1990, Meeting the needs for health services of persons withmental retardation living in the community. American Journal of Public Health, 80/9, 1043-1048.