Tuesday, November 1, 2011

A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny

Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny

from NorthJersey.com:

Down syndrome is sometimes an unexpected outcome of expecting a child. It was for Amy Julia Becker and her husband when their first child, Penny, was born with Down syndrome.

Becker recounts the sometimes difficult and often joyous journey in A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny (Bethany Books, amyjuliabecker.com). We spoke with Amy Julia in a recent e-mail conversation.

Question: Why did you write the book?
Answer: Although most people do not have personal experience with a diagnosis of Down syndrome, all of us have been disappointed when people we love do not conform to our expectations for them. I wrote A Good and Perfect Gift in hopes that other parents would resonate with themes of accepting our children for who they are rather than who we expect them to become. I also wrote it for individuals who are struggling to find spiritual meaning in the midst of difficult circumstances.

Question: What message do you hope readers will gain from this book?
Answer: I hope readers will leave A Good and Perfect Gift with an expanded understanding of our common humanity and the goodness that comes from receiving one another with love and acceptance rather than based upon performance or achievement. Moreover, I hope the story will challenge our cultural assumptions about human perfection and help readers to desire human flourishing instead.

Question: What has your child with Down syndrome taught you?
Answer: For a long time, I thought Penny was my daughter because I needed to be taught a lesson. But as I write in A Good and Perfect Gift, I eventually realized that if I thought about Penny in terms of lessons I needed to be taught, her existence was all about me. I eventually stopped thinking about her as a lesson and instead thought about her as a child. With that said, she, like my other children, has taught me many things, and some of those things come because she has Down syndrome.
In particular, Penny has taught me about unconditional love. She often walks into a room, takes my hand, looks into my eyes and says, "I love you Mom." And then she goes back to whatever she was doing before. She loves herself too, and I mean that in a good way. Almost everything she does takes more work for her to do than it does for a typically developing child. She gets frustrated sometimes, but she isn't frustrated with herself. For instance, last summer she was with a group of kids learning to play tennis. Or, I should say, she was trying to hit a tennis ball with a racket. I watched for half an hour and she probably hit two of two hundred balls. At the end of the lesson, she beamed, "I hit the ball, Mom!" I wish I could have her attitude. She's also taught me about prayer. At the end of most days, before bed, she puts her head in her hands and prays. She just talks and talks and talks. I crane my neck to listen because I know she'll offer more information about her day in those three minutes than when I'm asking her for details. Her honest and unedited sharing is a model for me.

Question: Have you learned different lessons from your other two children?
Answer: Penny is the oldest of our three children, so I haven't learned as much from William, who is three, or Marilee, who is 7 months old. William is much harder on himself than Penny. He will say things like, "I'm not good at scissors," with a scowl. I've learned not to correct him but instead to try to encourage him: "You're still learning how to use scissors" helps him a lot more than false praise. As I write about in A Good and Perfect Gift, I struggle with perfectionism. I see some of those same tendencies in William, so I hope I'm learning how to give him freedom to make mistakes and take risks.

Question; How is Penny today?
Answer: At this moment, Penny is starting her second week of kindergarten. Every morning she looks at me with wide-eyed delight when she asks, "I get to go to kindergarten again?" She loves school, from the new friends she's making to her one-on-one time with her speech or occupational therapist to learning how to read. She routinely entertains Marilee as I make a meal or do some other housework. She and William act like most brother/sister pairs, I suspect, which is to say that they yell at each other and he pushes her and she erupts into tears fairly often, and they play doctor and house and build towers together like good friends fairly often too. There are times when her impulsivity frustrates me, but on the whole she is a delightful little girl and a wonderful big sister.

Question: How much harder is it to parent a child with a disability than a child without a disability?
Answer: Each of our kids challenges us in their own way. William has temper tantrums, whereas Penny just melts onto the floor in a puddle of tears when she's upset. As I mentioned earlier, William struggles with perfectionism whereas Penny is more accepting of her own strengths and less despondent about her weaknesses. They both communicate well. I wish they both would sleep later in the morning. I don't want to downplay the challenges of having a child with a disability, but in our case, because Penny is our oldest child, it has not felt much harder. She did have more doctor's appointments and therapist sessions as a toddler, and that would have been far more difficult if I had had other children at the time. Her health is also stable, and of course many parents of children with disabilities face ongoing medical concerns for their children.

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