Sunday, November 29, 2009

Marriage for Down's syndrome couple


Nearly 2,000 years ago the Talmud recognized that finding a partner for a happy marriage is a miraculous feat. "To match couples together is as difficult as the splitting of the Red Sea," it tells us.

For young adults with disabilities, even splitting a sea does not capture the difficulties they must overcome in order to marry. One determined couple tackled them bravely.

Shalom is unaware that he is a trailblazer. This, he says, is just "the fulfillment of a dream of mine." When asked for how long has he wanted to marry, he responds, "From age zero."


  1. Speaking as a former foster parent who more than once had to pick up the pieces of such relationships...

    I believe men with Downs can't have children, but for people with other intellectual or emotional handicaps -- someone has to assume responsibility for any children. I do not want to see them in OHEL or some other foster care agency because the parents were overwhelmed by the burden. After the children were stunted by not getting enough stimulation or even ch"v beaten by parents who are in over their heads.

    Any baalei chesed looking to end the loneliness of these two people need to also supply a support system -- providing frequent babysitting and shopping help, giving parenting tips, making sure doctor's appointments are made and kept, helping with homework, etc, etc, etc...


    We had one foster child, an infant, whose mother was on medication for her psychiatric issues. She used a pump the entire time he was in foster care, and went nursing when the court restored custody. The medication made it through into her milk, and the poor baby died.

    Another pair of children, not in formal foster care, came back to our home multiple times. They had two very loving parents, but they were not quite up to mainstream intellectually. The children would catch up to grade level when at our home, but when returned their parents home, they would regress a year or two. Not because their parents did anything wrong -- just because less was demanded from and provided for them.


  2. "We had one foster child, an infant, whose mother was on medication for her psychiatric issues.....The medication made it through into her milk, and the poor baby died."

    Infant serum monitoring is indicated when the mother is nursing while taking lithium, valproic acid, or carbamazepine. These drugs can be given safely to a breastfeeding mother in most cases.

    Other psych. meds are generally considered safe during lactation.

    Although routine assay of infant serum drug levels was recommended in earlier treatment guidelines, this procedure is probably not warranted; in most instances low or non-detectable infant serum drug levels will be evident and serious adverse side effects are rarely reported.

    I was a La Leche League leader for many years. With the help of LLLI's physicians, I counseled many women who took psych. meds to safely continue breastfeeding.

    There are many treatment options that will allow a woman to breastfeed safely and it is rare when a doctor cannot prescribe a medication compatible with breastfeeding.

    Detailed information regarding the safety of psych meds during lactation has been available for at least the past 20 years. I am shocked that a doctor would prescribe a contraindicated drug to a lactating woman without the appropriate monitoring of the infant, especially given that the child had been in foster care.

    Didn't the court require monitoring of the infant's health, ie reporting from the pediatrician etc?

    Did this happen in the US?

  3. Interesting point Micha raises: people who cannot be trusted to raise children competently should not get married. Controversy defusion - I said "competently" not "properly." Lots of people are competent to raise children but unable / uninterested in raising them properly. I'm almost tempted to put myself in that group. But that's a different story altogether.

    At any rate...there is a growing number of children with various degrees of Autism across every social spectrum in the US. And I don't think this is merely the result of the increased patholization of deviant behavior in children. Something about life in the US is damaging the abilities of a growing number of children to be emotionally expressive, connected, and engaged in the social fabric around them.

    It takes a huge amount of work to raise a child with autism - I speak from personal experience. Children with autism, more than most other children, need to be surrounded by models of healthy communicative and emotional behavior. These models need to be reinforced constantly and with endless creativity, judgment, and foresight. It is exhausting. It is also not something a parent on the spectrum may be capable of doing competently, let alone properly. This would not be an issue, except for the fact that a parent on the spectrum (e.g. myself, as I discovered belatedly) is much more likely to produce children on the spectrum (e.g. my daughter). It's a vicious circle that is not always escapable.

    B"H I have a wonderful wife who is not on the spectrum, but she ends up doing most of the chinuch, because so much of the work of raising our daughter is stuff that I am simply unable to do properly. My wife carries around an endless amount of simmering frustration as a result, above and beyond her ambient loneliness from being married to a guy who is probably not capable of fulfilling her emotional needs to the degree that she needs.

    Plus, we spend a huge amount of money out of pocket to get her therapy that neither insurance nor the local schools are yet covering. That and we dread the prospect of transitioning her to the local community day schools in a few years once she's five or six, since the local schools apparently have almost no clue what to do with kids with autism.

    Like I said, my own diagnosis of autism was belated, but in retrospect it makes perfect sense and explains a great many things. Had I known what I'd be inflicting on my daughter and wife, I would never have dated. As it is, we remain on birth control long after our heter expired; as much as I have a mitzvah to procreate, I refuse to do so at my wife and prospective child's expense. I love my family and do as best I can for them, but not a day goes by without some moment of regret and sadness at what I could have avoided had I taken the time to understand myself better before rushing into shiduchim.

  4. My point was not that these couples should be avoided. Nor to point fingers at the doctor. After all, as a foster parent I knew nothing of the mother's medical condition, how much subterfuge she used to get to nurse her baby, what she was on, etc...

    We now have 10 children of our own. One is bipolar and has Aspergers. Another has Downs and diabeters. Others have more mainstream hurdles like ADD (with and without the "H"), dyslexia, and "annoying parents syndrome" :). We haven't done foster care in many years.

    There is no reason to think the child of two special needs parents will necessarily have special needs. Is a propensity for autism necessarily inherited? As for our original topic (see the post's header), Downs is not inherited.

    What I was trying to point to was the need for someone to provide support for the couple after the shidduch is made. I think it's horrible to condemn to people to loneliness rather than seek alternatives. There could be a support system for the home well in place and we could avoid the horror stories.



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