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| Buddy Walk 2011 |
Be gentle.
Monday, October 31, 2011
31 for 21 Down Syndrome Awareness coming to a close for another year
But.......... I hope that you will be aware of people with Down Syndrome all year long. Treat them with respect. Make them your friend. Offer congratulations to a new parent of a child with Down Syndrome. Get involved with Special Olympics. Smile.
Be gentle.
Be gentle.
Sunday, October 30, 2011
Saturday, October 29, 2011
31 for 21 Ten Commandments for Helping Parents with Special Needs
| Ten Commandments for Helping Parents of Children with Special Needs | |
| By Michele Stiefel | |
| I. | Do not avoid talking about our child with us. Do ask how he is doing. We may not answer much in the beginning — or we may spill our guts! Either way, we remember those who asked and can't seem to forget those who didn't. |
| II. | Touch us; touch our child. A hug, a hand on an arm, a look into our eyes lets us know that you care. A gentle caress on a child's cheek or holding a hand makes us feel "normal." We feel very alone and different in the beginning. |
| III. | Don't tell us how we should or shouldn't feel! We feel what we feel and that's that! In the early days and months, we are struggling with raw emotion that is usually right near the surface. |
| IV. | Don't say, "God only gives us as much as we can handle!" We are just trying to survive from one day to the next, especially in the beginning. What an additional load to put on someone who often doesn't feel like he or she is handling anything well at all! |
| V. | Don't say, "I admire you" or "You are so noble." Unless the parents willingly went out to adopt a child with special needs, we didn't want it to happen! We don't feel noble. At times we even feel trapped! |
| VI. | Do offer to help. Come and sit with the child so we can take a much needed break. Cook a meal or two and deliver them. Offer to take the siblings out for ice cream or pizza. Tell us that you are just a phone call away if we need anything — and then call us back to see how things are going. |
| VII. | Be patient with us. It is very hard to work through our grief. In the beginning, all we can see are the things that our child can't or will not be able to do. If we have always been independent or overachievers ourselves, it may be hard for us to accept your help right away. Please persevere; eventually we will be ready to accept your help. |
| VIII. | Be sure to acknowledge the sibling of the special needs child. In the aftermath of a diagnosis, etc., the sibling can get lost in the turmoil. If you go to visit, take something special for the brother or sister, too. Be sure to say hello to them. Talk with them before you make a fuss over the baby. |
| IX. | Please don't stare. If our child doesn't look "normal" or acts differently, we are very aware of it. In fact, that's all we can see at first. Find something positive to say — something as simple as "What beautiful eyes!" can be music to our ears. |
| X. | Remember, no matter what kind of disability our child has, he is still a child. He has a need to be loved and accepted. He has a need to be happy and to belong. He needs hugs and laughter, music and friends. He needs you — and so do we! |
Be gentle.
Friday, October 28, 2011
Thursday, October 27, 2011
31 for 21 Explaining Down Syndrome........
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This post is part of Parentlode. Read Lisa Belkin's introduction here.
A few months back, I mentioned to our daughter Penny that she would be meeting another little boy who had Down syndrome, just like her. She didn't say anything in response, but later on that day, when Penny was at school and William was getting ready for a nap, he said, "Mom, what down syn mean?"
"Down syndrome, sweetie. Not down syn."
"I know drum," he replied. "What down syn mean?"
I nodded slowly, realizing that he was envisioning making music, and grateful that he didn't have a concept of "sin" on hand. So I said, "Well, it's all one word, and it doesn't have anything to do with an instrument." I searched a mental map for words to explain a chromosomal anomaly to a two-year old. I began, "It means Penny has an extra part in her body," but I realized that sounded as though she might grow a third arm. Then I said, "It's something that makes Penny special."
He stuck out his lower lip. "I want to be special."
He stuck out his lower lip. "I want to be special."
I hugged him tight.
I haven't used that explanation since. But I've thought a lot about William's question. And I've realized that as much as I understand what Down syndrome is, biologically, I don't know what it means in any broader sense. I know Down syndrome is the presence of an extra chromosome 21 in every cell of Penny's body. I know it can cause heart defects and learning delays and hearing loss and vision problems. I know people within our culture tend to glorify or vilify it with stereotypes ranging from pronouncements about how people with Down syndrome are all sweetness and light to those that imply people with Down syndrome shouldn't exist.
On Monday of this past week, Sequenom, a biotechnology company in San Diego, released a new prenatal test designed to detect Down syndrome in the tenth week of pregnancy. In contrast to other screening tests, this one is 98% effective at identifying Trisomy 21. And in contrast to chorionic villa sampling and amniocentesis, this test is non-invasive, posing no risk to the health of mother or child. It's hailed as a great advancement in prenatal testing because it is both accurate and non-invasive. But as much as this test might be able to tell parents that their developing baby has an extra chromosome, I'm not convinced that this piece of information tells them much of anything at all.
I've seen Penny's karyotype, the graphic representation of her chromosomal makeup, including those three stubby lines clustered together like three old men squatting side by side. I've visited the doctors--the developmental pediatrician, the gastroenterologist, the cardiologist, the endocrinologist, the otolaryngologist, the ophthalmologist, the neurologist, the geneticist, even, for one harrowing season of unnecessary concern, the oncologist. I know that it is probably because of Down syndrome that Penny wears glasses, although three generations of typically developing women in my family have worn glasses at an early age, so maybe it's just heredity. It is probably because of Down syndrome that she is short, and yet I was always the smallest person in my class at school and still only top five feet in heels. I know that there are days when she is the loveliest child I've ever met--when she runs to my side and says, "Hug!", when she asks, "How was your day, Mom?", when she sings to her little sister and brings her toys, when she asks to pray for someone who is sick. But I also know that she is no more sweet or loving than her brother, and that she tests my limits and disobeys and deceives me about her intentions in equal measure too.
George Estreich, author of The Shape of the Eye: Down Syndrome, Family, and the Stories We Inheritexplores the etymology of the term Down syndrome, and his explanation gives voice to my own confusion:
A syndrome means, at root, a 'running together.' When you have a child, it all runs together: the heart defect, the eyes, the way her voice sounds, the name of the speech therapist, the worries over the future, the joys of discovery, the sliding sense--slow, quiet, enormous, an avalanche in the skull--that different is not as different as you thought. The genes produce the child, who lives a story, whose story is bound up with yours. So reducing a child to a heap of medical fragments is, for a parent, a complicated and dissonant act. It is a necessary fiction, a story one tells only in order to move on.
Maybe we've moved on.
William hasn't asked again, but if he does, I still won't have a definition to give him. Instead I have a story, a story that includes trips to the doctor and an Individualized Education Plan, a story that includes Penny's first loose tooth and skinned knees and birthday parties, a story that includes William erupting into tears if his big sister forgets to give him a hug before she heads to school.
When Penny was first born, Down syndrome meant fear and sadness and worry. Now, it's just two words used to describe a biological reality that could never adequately define her as a person. Down syndrome doesn't mean much to me these days, but Penny--impulsive, adorable, a big sister who loves to pump on the swing and read books and sing songs--Penny means the world.
Be gentle.
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