A Ounce of Prevention
May 31, 2007 on 6:17 pm | In Uncategorized | No CommentsThere is a concept in medicine today called “anticipatory counseling.” That is a form of directed guidance that allows for the parent to seek out an expert who will help them plan and establish methods of introducing new foods, what behaviors to be aware of and under what circumstances, and other characteristics to be on the look out for prior the next visit with the pediatrician. Children with Down syndrome have typically narrow ear canals, an especially narrow eustachian canal (that connects the ear with the throat), or a smaller than average head circumference, or height and weight gains that are below the norm.Early action in the area of prevention merely means that the parents should schedule several early childhood appointments if for no other reason than to establish these norms.If a child should develop a chronic recurring bronchitis or runny nose then recognizing the very earliest signs of the onset of one of these maladies can help stave off a serious prolonged episode.
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)
Har Sinai and Inclusion
May 31, 2007 on 12:59 pm | In Uncategorized | No CommentsAt Mount Sinai the Jewish people stood as one.The account of that moment in the Torah is as follow:
“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.
Religious Milestones and Down syndrome
May 31, 2007 on 2:01 am | In Uncategorized | No CommentsIn order to properly address the issue of a Bar Mitzvah for a child who is mentally retarded or has Down syndrome let us examine the Torah sources. Most halacha agrees that a child who has Down syndrome is most likely exempt from the Mitzvahs. However in order to examine this closer we need to decide what is the intent of this decision and what is the rationale behind them.
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?
The Minimum Requirement to Belong
May 30, 2007 on 1:26 pm | In Uncategorized | No CommentsTorah is compared to water.Water is an element that always goes downward unless we attempt to contain it and then it will burst forth since it cannot be contained.
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?”
Introduction to Inclusion
May 29, 2007 on 10:43 pm | In Uncategorized | No CommentsEverything G-d created was made with its own limit and simultaneously with a specific intent.What is the only creation capable of work that has no limit? It is our nefesh Elokis (our G-dly souls)- for the soul is connected with G-d’s essence, which is truly unlimited. And as a result of that connection, the soul is granted unbounded powers.
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.
What About the Future?
May 29, 2007 on 2:29 pm | In Uncategorized | No CommentsIt is so important to note that much is not still known or understood about Down syndrome and much has not yet been fully explored.Despite all of the studies about the chromosomal composition and the issues surrounding early life medical problems such as gastrointestinal problems or cardiac complications as a result of incomplete growth, etc., there remains much that needs to be studied.
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.
Finding the Person Before Us
May 28, 2007 on 7:21 pm | In Uncategorized | No CommentsOne of the most difficult pieces of the Jewish handicap puzzle is the inability to obtain accurate statistical data as to how many of us there are.There were two very limited studies that produced a sample in 1988. Those studies produced the following information. That there were 20,000 people or 8% of Chicago’s Jews that were disabled according to the Task Force on Services for the Disabled. (Illinois Department of Rehabilitation Services statistical study headed by Aaron Schmidt)Based upon a second sampling of a half million pre vocationally deaf persons within the United States there were approximately 25,000 Jewish deaf persons by the year 1974, using the National Census of the Deaf Population and the proportion of Jewish population that would be 5%. Source Alexander Fleischman.
It is virtually impossible to accurately portray the actual number of services that are required within the orthodox Jewish community when it is not legal to collect such data based upon religious or racial guidelines. We are only left to infer.
The handicapping features affects every aspect of a persons life from self image to the social interaction with the community and family. The handicap defines our boundaries and rather than encouraging the breaking of those boundaries actually nurtures increased limits on them.
The acceptance of this as a fact is the key limiting factor preventing unbounded personal success.
For example there are several studies that were able to sample the community based upon socio-economic status. In these studies it was shown that there is a correlation between higher socio-economic status and a positive course of functioning within the community.
People born with disability must first learn to cope with their disability before they can begin to learn to cope with the world around them. According to one study (DeWitt) there is a direct correlation between the length of time spent on the disability and the level of success in life.
There is a concept called the distorted interactive dynamic. This is the inability of the typical member of society to fully accept the disability of the person and therefore the highly limited conversation that pursues. It is a guarded and highly protected kind of discussion that prevents any form of spontaneity. This then is not only the problem of the person with the disability to overcome but rather a lifelong challenge.
A person with a disability must then define him/her self by how they are perceived by others for a significant portion of their lives.
These are simply some of the many imposed limitations that a person with a disability must confront as they navigate their lives.
It is difficult to see the person in the wheelchair. The wheelchair becomes the obstacle for us to overcome in order to see that there is indeed a human being sitting there before us.
More about Control
May 28, 2007 on 2:20 pm | In Uncategorized | No CommentsIt is easier to accept giving up when overwhelmed by the unwanted than it is to accept the situation as it is and as it was intended to be. By sharing successes and experiences we are comforted, we are challenged, and we are able to continue even though we may not all agree.
The parent of a child with a handicap is suddenly comforted with the reality of hope which is after all the ultimate redemption. For it is only from the self that this hopelessness comes and it is only from our Creator that the redemption from this suffering will come to a sudden halt.
The character of the family is only found when a challenge arises. The arrival of a disabled baby is one of those challenges. This character building challenge empowers every member of the family to restate or increase his or her family commitment, involvement, and participation. It is an opportunity to reaffirm the entire dynamic of sibling and parental relationships.
It is the ultimate test of the self as an integral part of the whole. Finally it is a challenge to define and redefine the collective directions and abilities of the members of that family.
Siblings become more comfortable with a population previously unknown to them and these very same siblings in another setting will take the initiative to put others at ease. A natural next step resulting from being the sibling of a special needs child.
With all this said, what can I offer you to keep your own child?
If you will make up your mind that all hope is not lost then this is the beginning of our ultimate collective redemption.
The Truth about Control
May 28, 2007 on 1:54 pm | In Uncategorized | No CommentsWe cannot control what happens during childbirth. It is like a lottery yet the grand prize is the baby. Since G-d is in control no two deliveries are going to be exactly the same. Just as no two people will be exactly the same.As Dore Schary said in his own words, “childbirth is one of the greatest shared moments in the lives of mothers and fathers and babies, offering an infinite number of possibilities as the potential.”
There are those segments of the process that are observed, monitored, and regulated, and there are those aspects of the process over which we have absolutely no control and even less insight.
The only tools that the orthodox Jewish community has that works is prayer and psalms which we use to influence the outcome. And these tools work. They become, as the Baal Shem Tov (1698 – 1760, founder of the Chassidic movement) has said, “the windows to heaven.”
When G-d sends us a child with Down syndrome, He’s also sending us the special instructions as to how to properly handle the situation.
As stated above just as there are no two people the same there are no two birthing experiences that are the same.
Every baby goes through a birthing process that is similar only in that every baby descends through a series of internal events ultimately presenting as an external being. It is here that all similarities end and the uniqueness of life begins.
This revealed and very unique infant now becomes the object of so much love and adoration. As soon as the baby is handed to the parents, the first thing they will do is join with every other parent in world history by fulfilling the “counting of the fingers and the toes” ritual.
When the birth is successful on every level and the child is the expected perfect package then there is an increased sense of closeness amongst the parents and siblings.
However what if, G-d forbid, your baby is born with a less-than-perfect result? How does that affect the increased closeness?
How many times have we heard that G-d does not make mistakes? Only humans make mistakes. Put this all another way, everything and everyone is perfect in the Creator’s eyes, it is our eyes that need correction.
Perhaps it is this inability to see this G-dly perfection that is present in the disabled child that is the same Divine punishment of blindness that the Sodomites experienced because they refused to heed G-d’s warnings not to harm Lot’s guests.
Unfortunately, the primary standard by which we measure acceptance is intellect. How many physicians have tried to fabricate their findings upon examination with manufactured information developed spontaneously to appease and soothe overly concerned parents of a child who has Down syndrome?
Doctors have a very difficult time admitting that they do not know something. They’ve been trained to never admit ignorance about a problem or concern of the patient. (This is slowly changing)
Diagnostics of disability is not a complete subject in medical school. Nor is presenting the facts compassionately to an already confused and upset postpartum parent.
Many, not all, rabbis are also ignorant of the infant and their potentials. These rabbis may even represent themselves to be experts at handling these situations. They are however very sophisticated at providing clandestine and fast action in order to soothe the immediate needs of the family never once answering the question as to what was the real intent of the Creator in all of this.
The family is no absolved of any wrong doing and can get on with their lives knowing that everything was handled according to halacha.
There are clearly times when a child born with a disability or handicap does not belong in the home. There are those situations where the personalities involved do not have the capacity to handle the situation as it is.
These are not and never are the situations where the child is born with something like Down syndrome.
I have often compared Down syndrome to the Cadillac of disability. That is of all of the forms of disability that a person could find that their child was diagnosed with, Down syndrome is the mildest and most manageable of them all.
So when a rabbinical decision is made to give up a child who was born with Down syndrome it is clearly a case of, “that’s the way I’ve always poskinned (adjudicated) so how could I possibly change now?”
The reason for this kind of thinking on the part of rabbinical decision makers is that they would have no answer for those whom he has already advised to give up their children many years ago if he would suddenly change and advise mothers to keep their children.
As harsh and as callous as this may sound it is indeed the facts as told to me by one of the biggest amongst those who give out such advice.
It is a very humbling and lonely experience to give birth to a disabled baby. And this baby will grow to become a constant reminder of that humbleness and vulnerability.
To reject this child is to reject the sense of vulnerability.
Having the inner strength to accept and the courage to overcome the fear of the unknown is what I would expect that these rabbis should begin to instill in these families at this most vulnerable moment.
By rejecting the old realities and perceptions of Down syndrome we can effect a change. Hope is the possibility for real change. Acceptance means that change will take place as long as hope is not lost.
The reason that these rabbinical decisions have been so easy to implement with family approval and full participation is that once hope is removed then the morale of the family is at its lowest point.
Sadly, many orthodox Jewish families continue to give their biological offspring away to institutions or up for adoptions.
True the community now has their own institutions and adoptive resources (all governmentally sponsored) yet these are all merely designed to make it easier to reject your own child.
These abandoned babies and their diverse disabilities offer for many, the first opportunity at self sacrifice. This may actually be the one and only time in these peoples’ lives that they are being offered the chance to be a humble human being.
Many of these babies are being given away by their own mothers and fathers without any honest concern for the siblings’ loss or the long term implications for the destructive and diverse nature of this decision of hopelessness.
That is to say certainly this decision was made with many hours of discussion as to how best to handle the situation but with few words wasted on how to best integrate the child and retain the wholeness of the family.
We must first recognize that there are many negative feelings that surface after the birth of any baby and how much more so when the result is a differently-abled baby.
Religious Jews, known for their great scholarship and self discipline have chosen, often, to hide behind the cloak of doing what they have always done. They try to maintain control and contain the situation rather than accept that they are vulnerable.
Yet it is that vulnerability that is the one thing we can share with the world that makes us whole again.
There is a well known Chassidic concept made known by the Baal Shem Tov, that explains that when a person dislikes something, a trait or a characteristic in another it is only because that person himself possesses these qualities.
Maybe these babies remind us of just how imperfect we are and just how vulnerable we can be. Maybe these babies remind us of how dependent we are on what others think and feel about us.
Us and Them
May 27, 2007 on 5:38 pm | In Uncategorized | No CommentsWhen referring to the self and to others our actions are either internal or external. There is no Jew who cannot be a mashpia for others. Giving guidance is not an exclusively cognitive activity.Everyone has the ability to help another in some small way. This is accomplished whether it is financially, emotionally, psychologically or merely by a persons simple presence.
“The stone which the builders initially scorned turned out to be the corner stone.” (Tehillim)
This was Dovid HaMelech.
At first he was overlooked because he was so small and perceived to be weak and insignificant. Later he was able to demonstrate who and what he really was.
Even the poor are not exempted from the mitzvah of giving tzedukah. So how much more so is a person obligated to give spiritual charity through encouragement and often by simply being and trying. (Rambam, Laws of Gifts to the Poor 7:5)
Torah law declares that every Jew can help someone else in some way.
You can try to exempt yourself by simply declaring that you don’t have enough strength to do so, however this is simply the Yetzer Hora (the Evil Inclination) seducing you.
If you have a baby and you are trying to find a way out of accepting the responsibility of caring for that baby by searching around for a way out then you are actively exempting yourself from your obligation to properly provide for this gift. This is you taking an active role in rejecting a gift given to you by Hashem.
Moshe Rabbeinu spoke with a speech impediment and Yaakov Avinu walked with a limp and Yitzchak Avinu was blind and yet they each still had something to offer Klal Yisroel.
We are taught of the many challenges and hardships of the Yidden in Mitzrayim. We learn how they met those challenges by hard work, and by maintaining their own unique way of dress and retaining the language of their people.
These are not tales of yore to be read once a year in the comfort of our air conditioned homes completely detached from the pain and suffering experienced by our brethren. Yet that is how it actually works until we are challenged as an individual and then we come to the realization of the totality of our true attachment to the community at large current and past.
We will then rely upon the community whether we accept or reject this newborn. Our search for comfort in the rabbinical, medical, and social work fabric will afford us many choices.
Running always sounds so comforting. Yet running does not diminish the pain or doubts and will not provide the opportunity for this child to grow up at home with a mommy and a daddy and siblings all their own.
“More than the calf wishes to suck does the cow wish to suckle.” (Pesachim 112b)
You have no feeling for this responsibility? It does not matter, so long as the mission is accomplished and accomplished properly.
“…for they have turned their back to Me, and not their face.” (Yermiyahu 2:27)
This means that one should never turn to Hashem with their back and not their face. One may turn with his back while the face is at least not turned elsewhere. The worst condition of this is when the “face” is involved in an opposite movement.
Everyone has value and if Hashem in His infinite wisdom chose to give you this gift trying to back out is simply not the answer. Your entire purpose for existence could be merely to accept this child and rear this child and not back out.
The easy path is not always the answer. Your dreams of a simple, easy, and comfortable life may not be fulfilled in this lifetime yet your expectations not being completed does not provide enough rationale to give up.
This child will grow to give tzedukah in some way. This child will however simultaneously be at the mercy of whomever you have chosen. Yet you will know every waking hour that you do not have any input into the life force of this perfect little neshamah.
Simply put our obligations are to approach the Holy One, Blessed be He, in sincere supplication that He grant us the strength to overpower our Yetzer Hora. We daven (pray) each day that we will be granted the strength to overcome the evil inclination who interferes with our acceptance of our own child and that when we are faced with a challenge that we will not listen to the other side but rather have the strength, courage, and conviction to succeed.
When we offer sincere prayers soliciting help from Hashem to guide us we will be answered as long as we stay the course. The truth will be revealed and our connection to G-d will be strengthened by facing the challenge and not backing away from the problem or Hashem.
May Hakadosh BaruchHu grant us to choose truth, to realize the simcha of helping another, and to have the ability to give tzedukah and may we all see the ultimate and true light immediately.
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