When You Are Raising A Daughter With Special Needs (or: Borrowing Trouble)

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It must have been the convergence of James Bond with a bedtime call from my sister, announcing the birth of her first baby, a girl. Maybe it was superimposing the image of her baby upon my own baby girl, no longer a baby, upon the image of the Bond girl, once victim of the sex trade and now caught in a supposedly even scarier net.

I don’t know what caused it. All I know is that I laid awake that night for an hour, two, three, tossing and turning, my insides churning.

When you’re raising a girl with special needs–especially one as beautiful as Julianna–certain subjects are bound to be especially worrisome. When Julianna was a baby, we attended the National Down Syndrome Congress convention, and for some reason I landed in a session on sexuality. It was taken for granted that you’d put your chromosomally-gifted child of a certain age on birth control, just for precaution. It was the first time it had occurred to me that what is already a high-stakes area in any family (particularly one with both philosophical and religious objections to manipulating the reproductive system), is even more fraught with terror in my own parenting journey.

The first time, but not the last.

I want Julianna to move out on her own, be independent, make her own decisions. But let’s be frank. The idea of raising my chromosomally gifted daughter’s chromosomally gifted child is enough to make me understand why so many parents keep their kids close under their wing into their twilight years. The fear of Julianna being taken advantage of, or simply having her feelings run away with her, strikes terror deep into my heart. Call me selfish, but I want my kids out of the house; I want the freedom and coupledom that is the heart of the empty nest experience. I have no interest in raising my grandchildren, and particularly not in starting this whole process over again–therapies, IEPs, and high maintenance everything–at the age of fifty or fifty-five.

Of course, there’s only a 50% chance that a child of Julianna’s would have the extra chromosome. That opens up another whole line of thinking. Imagine raising a child who’s bound to discover at some point, probably just about the time she hits adolescent rebellion, that she knows more and can do more than her mother.

This entire line of thinking is called Borrowing Trouble, and it’s beyond nonproductive. I’m well aware of that. It’s not like I live my life in terror over these issues. But it would be beyond foolhardy to take a Scarlett O’Hara approach to this and think, “I’ll think about that some other day.” If there is a safe path through these perilous waters, it comes by laying foundations so solid, so wide and deep, that nothing can shake what sits on top. Foundations are built now: today, tomorrow and the next day, amid lost teeth and learning to write her name. Waiting until Julianna is ten or eleven to be thinking about it isn’t an option.

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14 thoughts on “When You Are Raising A Daughter With Special Needs (or: Borrowing Trouble)

  1. And I thought 6 daughter’s was hard! Of course we did not use any artificial birth control but Americans think the worst sins are sexual but actually the worst sin is pride. I would add the failure to love and be loved. I do know this. Following Christ has more to do with allowing Him to love you and transform you into the image of His Son and less to do with following the letter of the law. The other thing I know is that God wants to protect your daughter- but oh what a quandry and conundrum

  2. Honestly, I’m not so sure there would be a moral problem with putting J on contraception (not saying you automatically should as there are other health concerns to consider). There are some “rules” that come to mind–first, that non-marital sex is sinful. Secondly, that in order for something to be sinful, there has to be free consent. Third, that the problem with birth control is that it separates the unitive and procreative aspects of sex.

    If she reaches the point that she can freely consent to intercourse, and she isn’t married, and does consent, she is sinning, and to put her on bc would be no different, morally, than putting any other unmarried person on birth control. If she marries, the same is true.

    However, if her mental status makes true consent impossible, then anyone who is having relations with her is, in essence raping her; taking advantage of her. Assuming you don’t know this is happening, and are taking reasonable (reasonable being defined on the basis of her abilities at the time) steps to protect her from the activity, protecting her from the consequences of someone else’s sin doesn’t strike me as sinful. You are not separating the unitive and procreative aspects of sex because in that case there is no unitive.

    • That’s true, I suppose. But I also have to think about the fact that more people with DS are getting married…and if they can consent to that, then we can’t pick and choose what we think they have the mental capacity to “get.”

      This is good food for thought and I thank you.

      • What is the fertility rate for DS girls? IOW, if the average DS woman was regularly sexually active and taking no steps to avoid pregnancy, what is the chance that she’d get pregnant?

      • That’s a good question. I don’t honestly know the answer. Boys with DS are virtually always infertile, but I know the girls can conceive. In fact a blog commenter on a DS blog recently told a story about a young woman with DS who had just given birth. Another cog in the wheels in my brain. :/

    • It never occurred to me to ask that; I would assume so. You are all asking such good questions, and making me think about the different facets of the question. Obviously I have some research to do.

  3. If your thought is that marriage is ok, but kids aren’t, I’m not so sure that would be considered a valid marriage in the Church. Marriages are supposed to be open to children and I’m pretty sure that even a pre-determined decision to use NFP to avoid kids throughout the marriage makes the marriage invalid. Is it sinful to contract what you know is an invalid marriage, even if the subject never comes up?

  4. Saying DS kids should be put on birth control seems to me to be the same as saying they should be forcibly sterilized as some states did in the early to mid 1900s. All a parent can do is to exercise prudence, and as you say, build a proper foundation. I would also be entreating the Blessed Mother to watch over her and keep her from harm. God has His purpose in Julianna. May it be fulfilled!

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