Monday, March 07, 2005


The Newsweek article "When Does Autism Start?" makes me think about my family. My sister Judy has an almost nine-year-old daughter named Julia. Julia is mentally retarded and autistic. I think she can speak in sentences, or at least fragments, but it’s not always easy to tell what she wants because when she starts screaming she stops using words. She has what I think many parents call a “melt-down” every day with my sister. For Julia, a "melt-down" includes extremely high-pitched, loud shrieking, physically attacking Judy and fighting whatever it is Judy is trying to do at the moment such as giving Julia a bath. These tantrums/attacks are scariest when Judy is driving. All children have "melt-downs" I know, but Julia’s tantrums have stayed at the absolutely terrified or enraged two-year-old level and have become increasingly dangerous as Julia has grown. She’s big for a nine-year-old and is well over half my sister’s size. Judy regularly suffers bruises from Julia's attacks and sometimes Judy even has to take refuge in the bathroom, hiding from her daughter’s violent rage until Julia calms down.

Julia isn’t all bad. She behaves pretty well at school, where she’s on the life skills track (the hope is that one day she’ll be capable of assisted living in a group home). She behaves well for babysitters and respite care workers. She even does well with her father and with my parents. But for Judy, Julia saves her worst, most destructive emotions and my sister, as a single mother, is worn out.

Judy and her ex-husband divorced in 2000, but he has stayed very present in Julia’s life. He has part custody (25%), has been very good about financial support and responds immediately when Judy calls him with a desperate, “Come get your daughter.” He knows he has to respond fast to those distress calls because stress has a particularly bad effect on Judy. She has a serious health concern that sometimes requires hospitalization and it has happened that she has hesitated to call an ambulance because she was the only one in the house with her daughter. Too much stress can trigger symptoms, so Judy is not an ideal candidate for being the single mother of this kind of special needs child.

Because Julia acts worst with Judy, because my sister is under constant emotional and physical stress from her increasingly violent daughter and because Judy’s health isn’t up to this kind of prolonged strain, Judy recently made the decision to relinquish primary custody. Later this year, her ex-husband will take primary custody of Julia, and Judy will begin seeing her on a part-time basis.

I was so relieved to hear Judy’s decision. They’re in San Diego, but I’ve heard plenty over the past eight and a half years about how draining and defeating it is to raise Julia. For years now I’ve wished there were some way Judy could get out of this situation and now it seems she will. Congratulations to her.

But even if Judy has found an escape out of the horrors of parenthood, I still have fear about it for myself. The constant sacrifices and stresses of taking care of a child sound overwhelming. And these days the idea of getting pregnant is more frightening than ever because I know my chances of giving birth to a normal, healthy child are diminishing as I get closer to 40. Having an autistic - or any other kind of special needs - child seems like an awful, never-ending nightmare. I already knew that from witnessing Judy's experience, but the Newsweek article confirms it.

After years of listening to my sister's ordeal, I don't want to have a special needs child. But I also don’t know if I want an ordinary child either. Even an ordinary one requires huge amounts of love, attention and sacrifice and I just don’t know if I can make that kind of room in my life. Everyone says no matter how much you prepare and anticipate, you never have any idea what parenthood is like until you're in it. Any parent can testify to how completely children changed everything about their daily life. I wonder, can I make every single thing in the world that's important to me secondary - or non-existent - to the needs of the child I'm raising? It’s really not appealing, especially when I consider how necessary writing and performing music are to my emotional well being. And so I remain undecided about whether or not I want kids at all.

This issue currently feels a bit sensitive to me as I fill out online dating questionnaires that ask if I want kids. I know it's an important bit of information for potential dates, but I'm afraid I just can't give a clearer answer than "I don't know." Any other child-free, never-married people out there who remain as uncertain about parenthood as I?

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