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Replying to Topic: To keep or to give away
Created On 1/25/05 6:48 PM by GamZuLetovah


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GamZuLetovah
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1/25/05 6:48 PM
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When my son with DS was born over a year ago we were faced with what I can probably say was the toughest choice of my life, to give him away or to keep him at home. Many well-meaning friends and family members were advising us to give the child away. We did B"H in the end keep him home and that was probably one of the smartest decisions in my life.

Today when I look back I really find it hard to understand how the thought of giving away my own child ever crossed my mind, but I guess when you are confused and hurting it is hard to think straight. That is why I think it is important to bring up this topic here an let other people that were in similar situations respond and discuss this topic in order to help anyone that might currently find themselves facing this tough choice make a more informed decision based on information obtained from people with experience as opposed to the pressure from the well-meaning relatives who have no experience and sometimes have ulterior motives.

Please post your thoughts and experiences.


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The sun is always shining! There are just times we don't see it.
 
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downsyndrome
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2/13/05 12:44 AM
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Thank you, GamZuLetovah, for putting it so well. It is unfortunate that when people are faced with the purchase of a new home or business, a shidduch or anything major, they don't hesitate to ask around for advice from knowledgeable people and take their time with decision-making. However, when a child with DS is born, people sometimes rush into the decision of not taking the child home, without 'yishuv hadas', without consulting with the right people, and certainly without giving themselves enough time to think it through.
I cannot imagine life without our Moishey. If somebody would knock on our door and offer me a magic pill to make his Down syndrome go away, I would refuse it. He makes our family life go 'round. He is the apple of our eyes and we cherish the ground he walks on. Yes, he sometimes goes on our nerves too, but aren't all our children, with DS and without, challenging in their own ways and their own times?
The stigma of mental retardation is still very real in our community. Two years ago I gave birth to a baby with severe medical issues. She was in the hospital for the first three months of her life and underwent two major surgeries. As a family, we went through hell. Nobody ever mentioned giving this child up, because she was 'normal'. A child with DS is often not even given a chance to prove him/her/self. May the Ribono Shel Olam give us all the siyata dishmaya and 'saychel' (and heart) to make the right decisions.
P.S. My toddler who was so ill is Boruch Hashem, Chasdei Hashem, repaired, beautiful, brilliant, and a true medical miracle!
 
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meira
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2/15/05 4:21 PM
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you may want to subscribe to Spirit! magazine. It gives a lot of information and chizuk for families dealing with developmental disabilities. If you go to www.spiritmag.org you can click on the subscribe button on the top of the page and you can subscribe to the magazine. It is a wonderul magazine.


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meira stein
 
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InterestedSpedMajor
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2/27/05 9:41 PM
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I think that it is a very hard decision to make when you have just given birth to a child who some people would recognize as a gift from Hashem like any other child and some would only be able to see the disabililty, not the child. I have worked with some families who would tell me how Hashem blessed them with this incredible child who they love tremendously and other families that see their child as such a burden, hurting the entire family's spirit. Hashem blessed these children with the most pure and holy neshomahs that have a huge obligation to bring love, understanding, and part of heaven onto earth. They cannot do this though without incredible parents, teachers, and supports that are there for them like you. Enjoy every second of your child and all of your others. You have truly been blessed with a gift.


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Aimee Simmons
 
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eagle wings
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3/2/05 1:45 PM
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While I quess it doesn't hurt to write about this, I think that the biggest help to parents making this choice is to SEE other parents (of a child with DS), and SEE that Life does go on.
If I could cure Rina's DS, I would in a minute, without delay. We love her as she is, but just as I got used to my teens becoming different, I wouldn't ming her changing into a child without her challenges.+-


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"Let GO and Let G_D"
 
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YEHIDI
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3/23/05 10:43 AM
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Is Raising
a DS Child
a Chesed
Shel Emes ?
One of our most beautiful mitzvos is burying the dead, This mitzva is called a ‘chesed shel emes’ because it is a merit that can never be repaid by the recipient of this act. Plainly speaking, it means, doing your utmost for somebody, with the intention of never experiencing the gratification of that individual returning the favor.

So, is raining a DS child a ‘chesed shel emes’? Are we doing our utmost for our DS child only because of our parental obligation? Are we taking care of their every need in a very mechanical, pained way just because we gave birth to them? Are we just doing and doing chesed unto them with no naches, gratification and joy in return?

Let us take a moment to reflect on our perception and expectation of the word "naches". It is very unfortunate that we sometimes get carried away by our day to day burdens (and sometimes aggravations) of raising our families and we fail to notice and feel the naches that truly surrounds us in our homes on a daily basis.

I recently attended a marvelous lecture by Rabbi Shimshon Pincus h"b in which he posed the following question. Why is this generation so stressed out?" His answer was a wonderful mind opener. I will not put it in quotes because I don’t recall it word for word; I will just try to get his message across. He said that our generation is obsessed with the "future". We son’t live for now, for today; we live for the then, the tomorrow. Everything we are doing has an ultimate goal for the future, whether intentional or unintentional.

So it is in our community, that that light at the end of the tunnel, our ultimate naches on life, is marrying off our children and seeing them continue the family bloodline. Everything that they do today, everything that they are today, is supposed to conform to that picture perfect image of excellent shidduch material. Everything positive about them gets celebrated under a public spotlight with a large halo of naches and ego surrounding it. Everything negative or problematic about them gets very discreetly shoved into a dared closet- a Pandora’s box.


Surely, one would then suppose that raising a DS child is a chesed shel emes? Is this child the perfect marriage candidate? Will he/she return our trials and tribulations of raising him/her by doing the "bomb" shidduch, and ultimately have the most lavish wedding that the family has ever attended? The answer is NO to every single question hereby posed, especially the first one.

No, at this stage of the game in early 1995 we don’t know what our DS child’s future holds in terms of marriage. No, there might not be the bomb shidduch, the lavish wedding with exotic flowers, energetic photographers and beaming mechutanim.


Therefore, we parents remove our telescopic glasses and we see in our DS children the joy and naches of the here and now. And, boy oh boy, is there naches to be reaped, Since the day my son was born I was always besieged with the "Official DS Data" that "these" children are so warm and loving. I thought of it more as a consolation than a personality trait in my child that will eventually melt my heart. No amount of pep talk could have prepared me for the utter joy, exhilaration, naches and a sense of accomplishment that I derive from this child, It is with good reason that he is classified as a "special child". The daily naches, the humor and laughter that permeate our home now, today, erase all skeptical thoughts about the future. the sensitivity and outreach in all family members,neighbors, and friends are overwhelming. The heavenly intervention or "hashgacha pratis" is apparent in every aspect of raising this little angel and our awareness of this has strengthened us to forge on even during difficult times.

So, back to our original question! Is raising a DS child a chessed shel emes? ABSOLUTELY NO!

Author Unknown


Edited: 3/23/05 at 10:52 AM by FrumSupport Moderator
 
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g
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3/23/05 4:44 PM
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Yehidi,
While my son does not have DS, but does have other special needs, I would like to respond to your post. I agree that a lot of our mentalities are aimed to the future. I think one of the first thoughts that go through one's mind when informed that one's child is "different" in whatever way, is, "How will they get married? What will be?"
However, I emphatically disagree with your query, "Are we just doing and doing chesed unto them with no naches, gratification and joy in return?" Firstly, we do not bring children into this world for the purpose of them giving us nachas. We do so, so they may serve Hashem. I think it is brought down that Hashem clearly did not create us for nachas, to bring pleasure to Him, because through our actions, we do many more aveiros than mitzvos. Yet, Hashem still creates us so that WE may be perfected, through serving Him. Every child, typically developing or atypically developing in any way, is created for a reason-- to do Hashem's will. Secondly, although there may be many hardships involved in raising and caring for a child with special needs, I think that any parent will tell you that no matter how severely a child is affected, the love they feel for this child is tremendous; the nachas one receives from seeing whatever miniscule progress the child makes, is incomparable. My guess is that the nachas one gets from their child with special needs being able to do something relatively minor, at whatever point, is greater than the nachas one may receive from a typically developing child doing something major. I think the reason for this is that a typically developing child is EXPECTED to do wonderful things, at set intervals, while with a child with special needs, there is an acute awareness that every breath they take, every smile, every step, every word-- is a gift. There is no "iz kumt mir."
I recently met an acquaintance whom I have not seen in several months. When she saw my son, she was amazed. "Is he supposed to be able to do this at this point?" she asked. I responded, "There is no 'SUPPOSED TO;' every step, every breath, they take is 'revach.'"
So you ask, "Chesed shel emes?" My answer-- the Emes is, it's a Chesed that the Ribono Shel Olam gave me this beautiful child as a pikadon!

 
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downsyndrome
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3/27/05 12:33 PM
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Hi Yehidi and 'g'!
May I humbly take the credit for writing "Is Raising a Child with DS a Chesed Shel Emes?"; it is published in one of the past issues of my magazine Down Syndrome Amongst Us.
Now, to respond to 'g' - sometimes, even as Yidden, 'maminin bnei maminim' we need to talk to people's emotions, even though logic ultimately needs to prevail. You are right that we don't have children for our own nachas, only to further Hakodush Boruch Hu's ratzon. The timing for this is perfect; it is Shushan Purim today. I cannot tell everybody on this forum strongly enough what a kiddush Hashem our Moishey was this Purim. Numerous tipsy shikurim fell on Moishey, kissed and hugged him and told my husband 'You don't know how lucky you are, what a zchus you have to be parenting such a heiliga neshama.' These were people who are erlicha people who are too reserved in their actions during the course of the 'normal' year to open up and share their sentiments like this - however, on Purim, under the influence of wine, their true emotions spilled over... We as a family didn't need this affirmation from these people - we experience the kiddusch Hashem that Moishey is all about every single day of the year.
So, we can combine the two issues above and say - No, raising a child with DS is not a chesed shel emes because we truly are reaping the joy of our efforts on this world and yes, we are raising this child l'shaym shomayim, because this is what Hashem wanted from us.....
Kol tov, Sarah Sander
 
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CK
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5/17/05 10:54 PM
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I'm hoping more people will post and join. I check in all the time to see if there are more posts, how can we get the word out?
On this subject, thanx for raising it, but I have to say, the whole subject repulses me. How come it is even an acceptable question to pose to parents? If Chas V'shalom a child is diagnosed with Cancer or is in a terrible car accident, does anyone suggest that they abandon their child? When the genetisist suggested to us that one of our "options" was to put up our baby for adoption, I couldn't believe my ears. I always heard that it was done "years ago" but NOW? I do not judge parents that are overwhelmed and in shock. I judge a community that dares make such a suggestion with seeming "legitimacy". one final thought, occassionally it is in a child's best interest to be raised by adoptive parents but not because of DS. So personally, I think this should be handled from the angle of "WHAT? I should do WHAT with my child?"
 
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rad
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9/4/05 8:57 PM
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For a parent expecting a "healthy" child this indeed must be a shock. When Yohai was born, my son asked me if he would be "normal", my answer was that there are plenty of people with no visible delay, yet they behave as such that "normal" would not be applicable to them...So who is really in the normal range. Our biggest help came from Dr. Reuven Feuerstein and his book says it all "Don't accept me as I am and that chromosomes do not have the last word.
Yohai is in Kindergarten in the school where I am the menahel. He has a shadow and can sight read close to 350 words...there is a wonderful curriculum out of England published by downsed.org written by Dr. Sue Buckley. She will be in charleston, sc for a workshop with our teachers.
Yes, let's spread the message that a child with DS is only too happy to learn and be counted...
achiya


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shemaYisrael.com
 
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g
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9/4/05 10:49 PM
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Achiya-
I am interested in this "downsed.org" program-- but it came up as "error"- not found. Is this the correct website? If not, how can I access it?
Thanks,
g
 
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eagle wings
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1/24/06 7:52 AM
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http://www.downsed.org/

is the adress for downsed. then at the side click on publishing-issues and information. The best around on teaching kids with DS


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"Let GO and Let G_D"
 
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hg8081
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12/24/07 2:43 PM
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We adopted our son with Down syndrome. His bio parents were (we found out years later)given misinformation on what a child with DS would be like. they expected he would be banging his head against the wall all day. He has a lot of issuesincluding reading and math but is very verbal, intuitive and in many ways like an avg 13 yr old boy.
 
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GamZuLetovah
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12/24/07 2:50 PM
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I believe that most parents who give their child away are under that same impression.

It would be a wonderful thing if all those well meaning relatives and friends, who create that impression, would bud out or at least do their homework first and speak to parents of DS children that were kept at home and cherish every moment with them.


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The sun is always shining! There are just times we don't see it.
 
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hg8081
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12/24/07 3:19 PM
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We found out (we have an open adoption, threy were at his Bar Mitzvah) that they went to ohel in Bklyn for info.
 
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