Thursday, July 01, 2004

My Brave Sister

My sister (one year younger) is named Judy and she has a special needs child. Julia is going to be eight years old this summer and she takes a lot of attention and patience. Her diagnosis with her school district is “autistic characteristics” and although Julia looks just like all the other eight-year-olds, she doesn’t talk and interact like they do. Having a sustained conversation with her or teaching her a game takes extra effort and patience, but the real demand is emotional. When Julia becomes upset, she becomes very, very, very loud. Even pediatricians, who hear children screaming all day long, have commented on her uniquely powerful lungs and high-pitched shriek. She also gets physical, often hitting my sister who can only try to defend herself.

Julia often tantrums in public and the triggers are the kind of stimuli that other kids don’t even register: a texture, a noise, too many people, a perceived invasion of her person, or nothing at all that anyone can pinpoint. Think of the last time you tried to calm a child who was having a fit over something you knew couldn’t be changed. Now imagine trying to calm that child when you have no idea in the world what the problem is and she can’t tell you. Now imagine going through that surrounded by strangers who glare, sigh or even offer advice such as spanking. Now imagine going through that most days of the week, sometimes more than once a day.

My sister’s role as a mother is hard. Inconceivably hard. She loves her daughter and Julia means the world to her, but it’s hard. I will never know how Judy manages, especially since she and her husband split up four years ago. Brian has remained present in Julia’s life and is a very active father, but Judy still has Julia 75% of the time. To deal with the stress of raising a special needs child alone, Judy does her best to regularly take time for herself and has put in place the best support system possible. Judy is the only mother I know, let alone single mother, who is so strict about scheduling the movie nights and friends-only lunches she needs. Good. For. Her.

Recently, Judy made a decision about moving to a new location. She is pulling out of sunny but unemployment-saturated San Diego and looking at houses in Texas, near our relatives. Brian is supportive about the idea, but he had one question: wouldn’t it be better for Julia to stay in the excellent special needs program she’s in and loves so much? There is a year left for Julia to work with a particular teacher and then she might change schools anyway. Judy had to agree that Brian was right: it wouldn’t be good to take Julia out of the school she’s in right now. Brian went on to propose that he and Judy reverse their 25/75 custody split, and have him take primary care of Julia next year.

It was a stunning idea. Judy found herself faced with the possibility of spending a significant amount of time away from her young daughter: both a mother’s fantasy and nightmare. She struggled with it, but it would only be for a year and then Julia could join Judy in the new home Judy will be preparing.

My sister impressed me with her bravery in 1990 when she and her husband suffered through the wedding ceremony and plunged into married life, and I have watched with fascination as she has worked to master motherhood with a very high maintenance child. But I have new admiration for her now because this time she’s choosing a challenging path that mainstream views do NOT support: Judy has decided to accept Brian’s plan and give him primary custody of their daughter for the next year while she sets down roots in a new location.

Is that amazing? I was so proud of her when she told me. I just think it’s the coolest thing. This plan counters all the conventional definitions of motherhood. It goes against what we’re taught about how mothers must always stay with their children no matter what, even at the cost of their own lives (in all ways). Such strict notions about motherhood don’t allow for new interpretations of what love looks like or new configurations of parenting and nurturing. Why shouldn’t Brian take primary custody of his daughter? Why shouldn’t Judy have the freedom to shift her life and establish a new home in the most practical way possible?

I just wanted to share my brave sister with you.

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