Saturday, November 17, 2007

the "M" word: a query

When I got the call from the midwife telling me that my AFP test results indicated an elevated risk that my baby (Stella) had Down syndrome and recommending amniocentesis, I told her we were declining genetic testing because "we would not terminate anyway." She sputtered and twittered and finally blurted out, "Did you know that a high percentage of marriages end in divorce when there's a child with a disability?!"

I know that statistically this is true--there is a higher rate of divorce among special needs families--even higher than the already high rate for all couples.

And folks, let me tell you, there has been trouble in this particular little "paradise." The tiny two-bedroom in Queens crackles with tension. How much of this, I wonder, has to do with our parenting of Stella? How much is just the two of us, the individuals we are? How much is the tininess of the tiny apartment?

I'm very curious about the experiences of other couples who are parenting a child with special needs. So I'd like to pose the question to those of you reading now who are in that situation: how do you think it has affected your marriage, if at all? If you were married but no longer are, were your child's special needs a factor in that decision?

I would like to hear as many voices as possible, and you may post anonymously. (In fact, that would probably be preferable.)


Special Needs Mama said...

My son's neurologist mentioned the same statistic, only his was closer to 90%. I have definitely seen this in my experience with other parents, just as I've seen the tension in my own marriage. SN partners fight over care, therapy, the attention the SN child receives over one another, you name it. The pressures are definitely greater, and, I think, the stakes are higher. Finally, one element that is, I think, rarely discussed, is grief. When my husband and I were newly married, his mother passed away. I could support him through his grief and the marriage was not strained. But when our twins were born and our daughter died, the grief was happening to both of us, only in different ways. The effect was isolating. Who gets to feel the grief, while the other offers the support? What happens when you are both grieving and can't offer support. It's a tough one, and, I think, perhaps a crux of the dilemma, at least in my experience.

Amy said...

Thanks so much for responding, Vicki. Grief is so difficult--I don't think our culture gives anyone the tools to deal with it, especially men. There's obviously also grief over a marriage, when it is in jeopardy. It's even harder for partners to "be there" for each other in such a situation.

Shelley said...

I can't really say because as you pointed out - there are a myriad of factors that could cause the tensions. Certainly though if I am tired and feeling tense worries such as doing the best for Hannah can become more significant in my mind than perhaps they need to be and that can definitely make for crankiness. Because I have twins though some of the 'itchy and scratchy' relates as much to her brother and is no doubt due to the whole gamut of parenting and lack of time/energy for ourselves and each other.

I hope that makes sense - I guess I feel that Han's disability is a factor but I couldn't say it was a separate and significant factor - just part of a whole range of issues really.

On the other side - my partner and I were incredibly close and relied on each other totally when both our babies were seriously ill - in a way we feel our relationship was tested and although things definitely get tough - we have a deep trust in each other - part of which comes from our earlier coping with Han's diagnosis and then the following medical issues she had.

Anonymous said...

As you point out, many things can cause strain on a marriage so it can be hard to quantify how much having a child with special needs leads to the decline of a marriage. When I first heard the statistics about divorce, I thought that the increased anxiety/work of raising a special needs child was the reason for the increase in divorce, but I often wonder if it is something deeper. I am not the same person I was before I had my son (who has Down syndrome). I see the world differently. My priorities have changed somewhat. I'm sure my husband has changed too, but he really doesn't vocalize what he is feeling. I often wonder if the two people we have become are going to end up being compatible. We didn't know about our son having Down syndrome until after he was born, had we had know prenatally, I don't think we would have agreed on what the course of action would have been. I think he would have wanted to abort; he would not have wanted to bring the uncertainty and anxiety of raising a child with special needs into our lives and the lives of our children. Of course, now that our son is here, my husband is devoted to him. I wish I had an easy answer for you.

Amy said...

This really resonates with me--the differences in reactions to the child's diagnosis, the father (in particular) not expressing--maybe not even realizing--his feelings about it. I have a sense that a man's (culturally imposed?) tendency to want to "fix" everything may cause fathers to feel particularly helpless in the face of a genetic condition.