quarta-feira, 31 de outubro de 2012

Do We Have an Obligation to Keep and Raise an Infant Born with Down syndrome?

Photo of Sofia Shalom at the piano

Children who have Down syndrome and the Original Luchos [the first tablets] were created in a completely perfect form by Hashem yet they were delivered in a less than perfect physical condition; they were smashed into many pieces. Yet they retained their original (kedusha) holiness and at such a spiritual level that they were kept in the Aron beside the all new second and perfectly complete tablets that were crafted as replacements. If their origins are of the highest level then how are we to understand what to do with them if their physicality has been altered in any way? 
It seems as if we are to keep them in a most splendid, noble, and righteous setting and further no matter how badly they appear to have been broken they still retain their original level of Kedusha.  How do we establish the value of our children? On what basis is this value determined? For example is there a point system of some kind for children who are born with diabetes, autism, or Down syndrome.
Rabbi Goldstock, David Jemal his father Elliot and mother Sheffy
And how does that point system compare against the typical/normals attending our neighborhood schools? After all, aren’t all children are created differently, so where is the line actually drawn?
How do children earn the right to be in a classroom? What is the criteria? Is it solely on the basis of intelligence? And if so which form of intelligence are we going to measure? Human consciousness is always in contact with the divine both in the hidden and revealed forms all at once yet always aspiring to achieve liberation and yet simultaneously already redeemed. This majestic dynamic connectivity is what makes us all spiritually different yet the same.
Inclusion education recognizes that each child has a value and a right to participate in the classroom in which his or her siblings participate.
Let’s examine the value of a child and how that valuation is established.
Berger family photo
It is my position that children born with Down syndrome do not belong in facilities, group homes, or institutions. The absence of parents and siblings to emulate, to love and be loved by, is the resultant tragic loss in these placements. And the excuses offered by administrators, doctors, rabbis, and parents, are simply not enough to justify these kinds of placements for the sake of convenience. Life is often inconvenient. However, inconvenience is only a good reason to buy a new mop or to forgo a vacation. It is never a solid enough reason to abandon offspring to another.
“It is well known that parents who are confronted with a profoundly distressing situation such as the birth of a child with Down syndrome frequently display impaired decision making capacity, since cognitive dysfunction usually prevails.” (Murphy, Oleshansky) ” During this initial traumatic period, parents are extremely vulnerable to external influences and suggestions. They often do not fully understand the presented medical complexities and the long-term implications.” (Pueschel)
“Therefore, it is not only cruel to ask parents ‘what they want,’ but it is also dishonest because many parents are consciously or unconsciously influenced by ‘one’ opinion. Parents may come to a different decision if they are afforded access to arrange of resources beyond the expertise and bias of a single ‘opinion.’ This should include other parents who have a child with Down syndrome. They should afford sufficient time for considering options and alternatives.” (IBID).
Treatment and care has continued to improve in quality and our schools and yeshivas at last must finally accept the responsibility to educate our children who have gone through so much over the course of distant past and recent history.
Now that we have faced the challenges of keeping our children at home we must now finally find a way to educate them properly. No more short cuts. No more corners cut to satisfy the status quo. Children with Down syndrome and other handicaps have always been here but just not in our schools.
Maybe at one time we did not know how to educate this population but now we know how to do it right. These are children who simply want to be accepted just as their siblings are accepted and in the same places by the same people.
If we are willing as a community to invest in the process of educating a child then that student has a sense of value. If on the other hand we are investing our time and resources in preventing a child from fully participating in the neighborhood school then we are expressing our devaluation of that child by simply excluding that child from the classroom.
The basis for most systems of acceptance and rejection is formulated by assessing the child’s academic performance and then making a determination as to whether or not the child belongs or not.
A child’s value and worth is determined first by affirming an identity. It is our obligation as adults to develop that identity in the most unique and dynamic method available.
Since there is no finality to identity formation in that it is constantly developing then it is our obligation to continually strive to increase the contribution to identity growth.
Having a baby is our way of shouting to the world that, with G-d’s help, we can produce the likeness of ourselves in some small way that will reflect the best that we are and can offer. We would certainly never pray to have a differently abled child yet we will eventually get to the point where we can accept that this is something that G-d needed to do.
The ultimate goal of every child matriculating in school at any level is to attain some level of autonomy. Since every child develops at their own unique pace it is normal then to expect that this process is never completed. Therefore at every level of progress we can expect ever increasing improvement.
It is this combination of an ever emerging personality that in combination with the disability itself that is the determinant outcome of the identity of the child born with a handicap.
This process is not one of free will. That is even though we are all free to chose our destiny it is the lack of free choice that is the ultimate limitation and final determinant for the child born with a handicap.
So it is the adults in the life of a child who will in the end decide how that child is to be educated and how his or her unique and very special identity will be shaped. The adults in this child’s life are his/her free choice. The Baal HaTanya points out that if the only food that you have you do not like you must still eat it in order to survive. It is not a matter of it being difficult or about your feelings, or desires, but it is rather simply what must be done.
In the absence of a full range of experiential opportunities we are in the final analysis then limiting our children’s potential by not insisting that all children be included together as one variable with an infinite potential possibilities.
Isn’t it our physical, material essence that we must strive to negate and our spiritual or divine soul that we are reaching to develop? So how do we allow another’s journey to be limited by our inability to accept their probabilities of success?
In the attempt to succeed at inclusion into the society we as adults cannot fathom that there is an inner desire to be accepted and fully participate on the part of the handicapped amongst us, merely because they cannot be fully express that desire.
If there is truly an “affirmative action” to be heaped upon our society in order to correct the wrongs meted out upon a segment of our population by an ongoing societal failure then let it be our handicapped children. After all isn’t this sort of societal discrimination against the handicapped historically wrong and ongoing.
Doesn’t this form of discrimination supercede our limited ability to communicate and therefore prevent us from fully comprehending the need for full inclusion, acceptance, and the affirmation of a fully developed life? The yeshiva’s of our home communities must begin to realize that inclusion does not prevent learning from taking place. It does not interfere with the teachers ability to teach. It does not cost any more than accommodating a child with ADD and even though it is not yet fully understood it improves the midos of the typical children in the classroom. *
*“In over 50 studies comparing academic performance of children in mainstreamed versus segregated students with mild handicapping conditions, the mean academic performance of the integrated group was in the 80th percentile while the segregated group was in the 50th percentile.” (Weiner, R., 1985, Impact on Schools, Capitol Publications)“Recent meta-analyses confirm a small to moderate beneficial effect of inclusion education on academic and social outcome of special needs students,” (Carlberg, C, and Kavale, K, Efficacy of Special Versus Regular Class Placement for Exceptional Children, J. Special Education, 1980, 295-305) (Baker, E.T., Wang,M.C., Walberg, H.J., The Effects of Inclusion on Learning, Education Leadership” 1994-1995, 33-35) Johns Hopkins University Comprehensive school wide restructuring program called “Success for All” student achievement was measured. In assessing effect they measured a control group with students in “Success for All.” (Woodcock Language Proficiency Battery 1984, Durell Analysis of Reading Differences, 1980, Student Attention and Retention).
While assessment showed improved reading for all students the most dramatic was amongst the lowest achievers.
Inclusion has been shown to 1 reduce fear of human differences accompanied by increased comfort and awareness (Peck, et al 1992), and 2 increased growth in social cognition (Murray-Seegert,C., “Nasty Girls Thugs and Humans Like Us: Social Relations Between Severely Disabled and Non Disabled Students in High School,” Baltimore; Paul Brooks, 1989).
Man’s true dignity: His sanctity, comes from his being capable of being in the presence of G-d. Man’s humanness is found in his capacity for a relationship with G-d. Everything G-d created was made with its own limit and simultaneously with a specific intent.
G-d does not make mistakes when creating human beings. Only human beings make mistakes through ignorance. Put another way, everything and everyone is perfect in His eyes; It is our eyes that need correcting.
In any specific or general situation that may occur there needs to be some beneficial yet correct communal response. Thus the most propitious moment to commence an intervention tactic would exist long before the need actually arises. It should however be implemented on an as needed basis and yet prepared to be implemented without the need to wait.
The drama of fund raising as it is practiced, is that most people want to feel as if they are part of the “emergency room relief-syndrome.” Thus every philanthropist likes to feel as if they were able to directly use their financial clout as part of the success of the response team. These givers do not want to actually be involved until the probability for a problem that is actually on course for deteriorating is actually is in progress. It is, simply put, the nature of giving.
Developing an interest on the part of philanthropists is the most difficult and challenging in a general sense and how much more so when trying to introduce the concept of participation at the earliest stages of a crisis. There exists some obvious reasons for this and some not so obvious.
Primarily during the earliest stages of crisis there seems to be a lack of focus and attention on the difficulties as they are unfolding. [This on the part of the care givers as well as the community at large.] 
Therefore the potential recipients seem much less the issue at that moment and their situation is not at a level of demanding or critical and therefore it remains much less sympathetic. Finally, while being successful at the very earliest stages prevents the difficulties from escalating and deteriorating to a level requiring community wide participation there still remains a lack of public sympathy and understanding at the earliest phase of crisis. One main reason is that there is always the optomistic view that the situation will be resolved without having to involve others.
In Viyikra (25:35) we are taught that, “If your fellow amongst you becomes needy…you should support him…” The word V’heh cheh zaktah Bo which means “to support him” is translated to mean that he should be supported as soon as he begins to fall, for if not so it will become concomitantly more difficult to do so with the passage of time. (See Rashi).
The rabbinical literature as it relates to these ethical issues of timeliness seems to support this thinking in that it is always better to prevent the deterioration than to wait and attempt to rebuild or rehabilitate the situation after it has collapsed.
One such very well known example is the case of an animal that has fallen under the burden of its load. In this case we are charged with the responsibility of unloading the collapsed beast from its burden, (Gemora Baba Metzia 32A and B) this is all in order to prevent further loss to the owner. There is a second case that needs to be cited as well in which we are charged with the responsibility of lending assistance prior to a journey with the actual loading of an animal (on this point there is a disagreement as to whether the mandate applies to unloading as well, or not, R. Yosse). However it is clear that the act of assisting before the crisis begins is clearly the path better traveled.
The Rambam developed an eight tiered proposal as to how best to give tzeduka. Giving to the recipient at the very earliest stage of need and as anonymously as possible is the ideal method of discharging our obligations in these matters according to the Rambam.
Yeshiva classroom for girls
The Rambam also outlines in decending order from the most desirable methods of giving tzeduka to the least desirable methodology and he does this in eight levels or stages.
The primary of these methods is to offer some form of early support that is entirely independent from the welfare system or from the social welfare system. This is accomplished by offering a loan or a gift or a business deal or by providing a tzeduka in the form of employment of some kind without being asked to do so.
The first four levels of tzeduka all provide for anonymity to be maintained and for the recipient to retain their dignity completely intact.
The Rambam is also pointing out that there are considerations that need to be accounted for that have no relationship with the actual material need that is being requested by the recipient and that goes well beyond this plea for help.
In the case of a child born with a disability or a handicap the need for the earliest form of intervention is the ideal model. To delay a response at this or at any other point along the way in childhood or in the development of a person is to wait until a visible crisis arises which will only limit the ultimate preventation which is the earliest possible prescriptive participation.
And let us understand one more important point here and that is that even if the giving of the tzeduka is for the purpose of some personal gain (see the second four categories of giving as listed by the Rambam) or if there is some other hidden motivation on the part of the philanthropist himself, the act of the giving of this tzeduka is a mitzva none-the-less without reservation. (Pesachim 8A, Avoda Zora 19A).
The earlier then that we give, no matter what the motivating factor, the greater the benefit and the potential for prevention and therefore the healthier we will be as a people.
Rabbi Dr. Eliezer Goldstock is the international director of Heart to Heart: The American Jewish Society for Distinguished Children for the past 22 years preventing children from being lost to k’lal Yisroel and their families by providing guidance, assistance, and insight to allow families to remain together and he is currently directing the construction of a center in Israel, known as “Machon Shira V’Zimra,” for those adults who want to reach their full and complete potential. The overall objectives include, marriage, work, socialization, recreation, and full participation and complete acceptance in all areas of life skills. 
Rabbi Eliezer M. Goldstock and his wife Mrs. Chana
Rabbi Goldstock and his wife of valor, Chana, his life partner, are currently living in both Yerushalayim and New York and are the proud parents of six children and seven grandchildren. They have two children who were born with Down syndrome and their youngest was adopted and was at severe risk as an infant and developed slowly and was never supposed to be able to walk talk or eat and today he is always on the run, constantly talking, and eats several portions at a time. 
By Rabbi Dr. Eliezer M. Goldstock.
Heart to Heart
383 Kingston Avenue
Suite 232
Brooklyn, New York 11213
Heart to Heart
Yochanan ben Zakai 18/1
Jerusalem, Israel 93186

Rabbi Eliezer M. Goldstock, PhD
National Director, Heart to Heart:AJSDC
איגוד הרבנים ד'אמריקא

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