Wednesday, August 26, 2009

Down's Syndrome - Disaster or mixed blessing?


A friend confided to me that she was concerned about her sister, who had just given birth to a little girl with Down Syndrome.

"I'm worried about her state of mind. She seems to be in denial, behaving as if the baby was normal. I'm wondering how she will cope when the reality hits."

I ventured that denial might be a necessary stage in the acceptance process.

"It's too big a thing to embrace all at once," I surmised, "and so she has gone into shock, like people do after a traumatic event. It shields her from the full force of what has happened, but that doesn't mean she isn't coming to terms with it inside." [...]


  1. Have you ever met the siblings of a downs syndrome child? The best, most caring people you will ever meet. There is just something different about them. they know what is important in life, at least there is that benefit.

  2. Or, perhaps, the new mother has already come to terms with the truth - that her baby is just that...a baby! Maybe she is thrilled to parent this amazing new gift that was created in the image of the Almighty and is fearfully and wonderfully made. That is my hope, anyway.

    The person to be pitied is the aunt, for being so short-sighted as to put limits on her beautiful niece before she even has a chance to be.

  3. I am speaking as both a mother of a child (age 14 years) with Down syndrome, and a person who goes to talk to new mothers.
    Many mothers go into "denial" (not believing it is Down S. until the genetic tests come back), and even more believe that their child will be the "highest functioning child that there is with DS). This is VERY normal. Many mothers cry for three months. Many "cope" beautifully at first (often because the child has medical problems, and they have to JUMP into action, and deal with the diagnosis at a later date. ALL of these reactions are normal.
    If she is taking care of the baby, going to needed check -ups (like echo heart), etc., she should be OK.

    There are several reasourses for parents (including developemental journal) on the sidebar of my blog.
    Probably the best thing you can do for this woman if give her a connection to another parent. If you want, you can give her my number: Israel 972-(0)3 Tel Aviv area- 5794996.

    My daughter has a shirt:
    "My chromosomes are just the same as yours
    2% extra free of charge"

    Down syndrome is only part of the child. They are mostly just like everybody else.

  4. Difeerent "fresh" parents (of a baby with DS)react differently. Some new moms cry for three months, some jump into action right away. Some have realistic expectatiions, some do not (either believe the child is "normal" or can't do anything). ALL of these reactions are NORMAL.
    Accepting that this child is:
    -mostly like everyone else
    -OK as he is
    -needs LOTS of extra help
    TAKES TIME and is NOT a one-time thing. Accepting the limitations of the child recurs again and again.

    If mother is ONLY crying and not interested in anything//not taking care of the baby// not sleeping or eating//unable to enjoy anything

    There are good resources listed at the side of my blog, and you can give the new mother my phone:
    (Israel 972) (0)3 - 579-4996 I speak regularly to new mothers, and am fluent (speach at least) in English and Hebrew.

    PS Down syndrome is NOT a "Disaster". Live DOES go on, and this child is a yiddishe neshama like any other, first and foremost.

  5. My wife does work for Heart to Heart an organization for special needs children. It was founded by R' Lazer Goldstock.

    as I already wrote in another comment to this blog: When a child with Downs is born in New Square and the parents are told by "chashever rabbanim" or an admo"r to abandon the child -- in Good Sam, a Catholic hospital! -- and tell the world it was a neifel, R' Lazer Goldstock is there with flowers and a "Mazal Tov".

    I have been at more than one subsequent simchah where the father told me that that one act changed his entire perspective me'eivel leyom tov about his new child. Nu, so it's not the berakhah he thought he was getting; but a child of less intellectual capacity is still a berakhah.

    This morning, Shuby and I had a wonderful moment in which his face lit up when he learned I was still home when he woke up, he hugged me, rubbed my back, and wished me a great day. His Downs reduces his intellectual capacity, but there is an authenticity to his emotions that the rest of us could learn from.


    PS to Ricki's Mom: I think raising a child with Downs is easier here in the states.

  6. Down's Syndrome children often make up in emotional intelligence what they are lacking in abstract thinking.

    I heard the story of a local resident who went into severe depression when he discovered his child had Down's Syndrome. It took over a week for the hospital to persuade him to take the child home. At first he wanted even look at her. Gradually he discovered her purity of heart - and she is now without question his favorite child. He can not imagine life today without her.

    Similarly I have a friend with a Down's Syndrome child - now six. When the baby was born he was in tears because the staff of the hospital came to comfort him and his wife and suggested that the diaster could be mitigated if they child was placed in an institution. I comforted him with the above story and told him that he would eventually come to appreciate his child.

    Six years later - and much work and sacrifice - the child is the treasured center of the family. there has been a tremendous amount of work involved and she will never be of normal intelligence. But she is in a regular class right now.

  7. I should point out though, that I did not go through the phenomenon we're discussing. We adopted Shuby. We knew from day one we were raising a child with that kind of temimus haleiv (pureheartedness), even if it meant his being the tam (simple son) at our seider.

    The parent who mourns the child they thought they were going to have has a drastic readjustment. Like Emily Pearl Kingsley's "Welcome to Holland although a real life dilemma of this magnitude isn't overcome with a short essay, no matter how poignant the metaphor.

    It's entirely different when Holland was your chosen vacation to begin with. I just wish more people would realize that it's a beautiful place; one that you don't necessarily have to have the Almighty foist on you before you wish to go there.



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