Archive for the ‘
Down Syndrome ’ Category
Tuesday, April 16th, 2013
This last week has been a grueling one for a beautiful family, along with the momosphere. Gavin Leong, age 5 and 1/2, passed away. His mom, Kate Leong, writes the beloved blog Chasing Rainbows; it was a finalist for Parent’s annual Blog Awards. Gavin went into cardiac arrest last Wednesday following a seizure, and died on Sunday evening. The outpouring of love and support on Kate’s blog and Facebook has been tremendous. So many of us were wishing for the miracle and, when it became clear that Gavin wasn’t going to make it, we sent countless thousands of prayers and supportive messages.
I have experienced other tragedies —a friend’s untimely death, my father’s passing, my son’s stroke at birth—but never the death of a friend’s child. As I’ve struggled with despondency, bewilderment and anger, I’ve found comfort in some basic life truths:
Humans have amazing resiliency.
I never realized how much strength a parent could possess until I saw the photos Kate put on Facebook of her rocking Gavin to sleep in the hospital and holding him for the last time, and her blog posts about his final days. She had a choice: She could have melted into a private puddle of agony. She chose strength, the extreme kind. Just thinking of it will surely bolster others during hard times.
Out of bad can come good.
Kate and her husband did not hesitate to offer Gavin’s organs for donation. On the day he died, her 43rd birthday, Kate asked readers to participate in a project: Help someone out, share the message of Gavin’s story, pay it forward. She listed suggestions: Give old toys to a special needs classroom. Help a stranger unload groceries. Bring magazines to a local hospital for parents spending time there with a child. And many, many people took her up on her suggestion.
One person can change the world.
Gavin was so young, but his impact far surpassed his years. As Kate wrote in a post, ”If you didn’t know him or realize how he touched people’s lives, just look at the outpouring of comments and Facebook posts and blog posts about him. People have been inspired by him over the years—and continue to be inspired by him now—and I know in my heart, that, even in his death, that won’t change.”
From my other blog:
The gift of everyday gratitude
For the love of a child who is gone—but will keep on changing the world
Categories: Autism, Cerebral Palsy, Children With Special Needs, Disability, Down Syndrome, Must Read, SPD, Special Needs, Special Needs Parenting, To The Max | Tags: health, Parents 2013 Blog Awards, Special needs
Thursday, April 11th, 2013
This guest post is by Amy Julia Becker, author of the new book What Every Woman Needs to Know About Prenatal Testing: Insight From a Mom Who Has Been There and A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny. She lives in western Connecticut with her husband and three children.
When I was a pregnant 28-year old, I didn’t hesitate as my doctor offered a screening test for various genetic conditions. I figured it couldn’t hurt me or my baby, and that the information the test provided would most likely allow me to check a box off my mental list. I was hoping for reassurance that my child was and would be healthy, happy, and who I expected. As it happens, despite the fact that the prenatal tests suggested otherwise, our daughter was diagnosed with Down syndrome two hours after birth. Since that moment, I’ve spent a lot of time thinking about sticking out my arm for a blood draw eight years ago. In retrospect, I wish I had known how problematic my assumptions about prenatal testing were, so my hope now is to offer other women a chance to confront some myths surrounding prenatal testing:
Myth #1: Your doctor can tell you everything you need to know about prenatal testing.
Two hours after Penny was born, a pediatrician and a neonatologist told us that they suspected she had Down syndrome. I hardly heard their words, but later we received a packet of information that listed medical concerns for children with Down syndrome, and I read about her likelihood of developing celiac disease, childhood leukemia, intellectual delays, vision and hearing impairments. But the doctors couldn’t tell me much about what has proved to be far more important to our life as a family—Penny’s personality, the way she would fidget like her father and jump up and down when receiving a new book, just as I did when I was little. Doctors can provide medical information about the conditions that might be diagnosed through prenatal testing, but most doctors are unable to provide information about the social and emotional context for children with disabilities.
A study published in the American Journal of Medical Genetics demonstrated that doctors and genetic counselors value clinical information most when presenting a prenatal diagnosis, even though parents report valuing information that details the social context for Down syndrome. As numerous studies attest, what parents want and what doctors and counselors provide often differ. Expectant parents need more than medical knowledge when making decisions about their families.
Myth #2: The best thing for every pregnant woman is to pursue prenatal screening.
When I was pregnant with Marilee, my third child, I chose normal ultrasound exams and a fetal echocardiogram, but I declined all other prenatal tests. Because I had already given birth to one child with Down syndrome, there was a higher than usual chance that my other children could be born with Down syndrome, but I also felt confident that the testing we had pursued would give us all the information we needed in order to welcome her into the world.
The American College of Obstetricians and Gynecologists recommends that doctors offer prenatal screening tests to all pregnant women, regardless of age or family history. Once the offer has been made, the decision about what route to pursue is up to you. If you want the option of abortion in the case of a prenatal diagnosis, then you will probably choose screening which might lead to more invasive testing (an amniocentesis or corionic villa sampling). But if you don’t want the option of abortion, there are other factors to consider. Perhaps you would like this information so you can feel emotionally prepared. Perhaps you have other kids at home and might need to make different preparations if your baby might be in the hospital for a longer stay. Perhaps you are afraid that other people would put pressure on you to abort so you don’t want the information. Perhaps you suspect that this type of information would be difficult at any point but easier once the baby has been born.
Myth #3: Prenatal testing is just a guise for selective abortion.
Although at least 70% of American women who receive a prenatal diagnosis of Down syndrome choose to terminate their pregnancies, and even more terminate with diagnoses like anencephaly, Edward’s syndrome, and Patau syndrome, prenatal testing can serve as a way to prepare well for the birth of a baby with a disability. Mona Patel, for instance, wrote about the ways prenatal testing that identified Down syndrome allowed her to prepare for her son’s birth: “Knowing about the diagnosis gave me time to learn. We spoke with a genetic counselor and explored books and internet resources. We contacted people who had children with Down syndrome and eventually attended a local support group meeting.” Many women who have chosen to continue their pregnancies after a prenatal diagnosis are able to find emotional and social support while also preparing on a practical level during the later months of pregnancy.
Myth #4: You can predict the type of child you will have.
Ethicist Stanley Hauerwas once said, “The only difference between parents of kids with [intellectual disabilities] and other parents is they find out a whole lot sooner they didn’t get the kid they wanted.”
Prenatal testing offers a false sense that knowing the chromosome count of a baby can tell us something positive or negative about who that child will be. But every life that comes into this world does so with both limitations and possibilities. Every kid will be a burden on his or her parent. And every kid, no matter their limitations, can be a blessing.
When Penny was born, I had to confront my own false assumptions about prenatal testing, and, more importantly, about the child I thought I wanted to have in our family. Now I know that more advanced prenatal testing could have given me a diagnosis and offered me statistical probabilities about the medical and social supports our daughter would need. But I also know that even the most advanced prenatal testing would have offered me very little to predict the sorrows and joys of life with this particular little girl in this particular family. There’s no test for how much love our hearts can hold.
Images courtesy of Amy Julia Becker
Categories: Autism, Cerebral Palsy, Children With Special Needs, Disability, Down Syndrome, Must Read, SPD, Special Needs, Special Needs Parenting, To The Max | Tags: Amy Julia Becker, health, prenatal testing, What Every Woman Needs To Know About Prenatal Testing
Tuesday, April 2nd, 2013
In honor of World Autism Awareness Day (and month!), I asked the good people of MyAutismTeam—a social network of some 41,000 parents—to share the following question. Here’s what moms and dads had to say:
I wish people understood that children with autism…
“Just want to be accepted like everyone else.”—Rebecca W.
“Just because you know a child with autism doesn’t mean you know what autism is like for every child with it. There can be some similarities but they have different strengths, challenges, fears and requirements.”—Kathy R.
“Our kids cling to what makes them feel safe. Routine is key.”—Alicia K.
“My son is a child first. Please don’t ever refer to children as so-and-so’s ‘special needs kid.’ Start with his name first. Invite them to parties or a get-together once in a while. Be brave and show friendship. We will love you for the effort!”—Tonya C.
“Just because they process differently, or it takes a few more times for an explanation to sink in, they’re not stupid.”—Jill B.
“That they are not misbehaved kids. Their senses are different…. You don’t know how many times I’ve wanted to tell someone off for staring when Shophia has an episode in public.”—Tiffany C.
“Their disability is not always physically obvious, but they have special needs just the same.”–Jennifer R.
“They don’t ‘suffer’ from autism. They suffer from people’s ignorance, hate, intolerance and judgment.”—Jada W.
“Be literal with them, they don’t understand hints.”—Teresa T.
“It is not contagious.”—Sandi B.
“Our children are not spoiled! We do things differently to accommodate their needs because that’s what works for them to be able to function!”—Maria R.
“I don’t want my son to be treated differently, I want him to be accepted like everyone else—with the understanding that he is a little slower than other kids his age. And he doesn’t understand sarcasm.”—Rande L.T.
“They are not stubborn, willful or oppositional. They lack coping skills and are anxious, fearful and afraid.”—Linda O.
“Staring, bullying and isolating someone with this condition is a sin! My Aspie told me he doesn’t feel like going out in public because he feels as though he’s in the way! Try swallowing that when your firstborn, most beautiful child says this to you!”—Toni H.
“They are smart and creative people with much to offer this world.”—Traci D.
“They have hopes and aspirations for a full, useful and independent life…and they can achieve it with community support and acceptance.”—Nancy J.
“They go to college too! So proud of my 21-year-old son who is getting A’s in Japanese and loving it!”—Kim R.
“My autistic grandson is not ‘retarded.’ I hate that word. He is a handsome, very intelligent boy. He just handles some things differently.”—Nancy M.
“Not all kids or adults are like Rain Man.”—Dannie M.
“My son’s condition is not caused by bad parenting.”—Lisa A.
“They are capable of falling in love and even getting married when they grow up.”—Anna V.
”My son is like everyone else in this world. He thrives on love, acceptance and understanding. If his peers would just open their minds they would see that he is as cool as they think they are.”—Trisha P.
“How much more capable than what you may realize. Don’t sell them short or count them out.”—Lisa C.
“They are a gift like any other child. And they are some of the strongest people in the world.”—Shayla A.
Image of Autism Awareness Day note via Shutterstock
Categories: Autism, Cerebral Palsy, Children With Special Needs, Disability, Down Syndrome, Must Read, SPD, Special Needs, Special Needs Parenting, To The Max | Tags: health, World Autism Awareness Day 2013, World Autism Awareness Month 2013
Monday, March 25th, 2013
Today is National Cerebral Palsy Awareness Day, part of a month-long campaign. And there is a whole lot of awareness to be raised, because there is a shocking lack of funding for CP research. (Warning: If you have a kid with CP, the following might make your blood pressure rise.)
More than 800,000 Americans have cerebral palsy, notes the non-profit Reaching For The Stars (RFTS). It’s the most common motor disability in children, and has a higher rate of occurrence than muscular dystrophy, childhood cancer, hearing and vision loss, spina bifida, hemophilia, fetal alcohol syndrome and cystic fibrosis. There is no known cure, or means of preventing it. In more than 80 percent of cases of CP, the cause is unknown. As RFTS notes, “We still do not know much more about the underlying causes for prevention of CP than we did half a century ago.”
More troubling facts:
• Cerebral palsy receives no dedicated federal funding for research at the National Institutes of Health or the Centers for Disease Control. Data indicates that, in recent years, up to four times more NIH funding was dedicated toward research and surveillance of disorders that affect less than half as many people as those living with CP.
• Despite advances in prenatal and neonatal care, one study indicates the prevalence of CP is now as high as 3.7 per 1000 8-year-olds.
• CP is costly. Most children and adults who have it need long-term medical care. The average lifetime additional cost for the care of a person with CP versus one who doesn’t have it is $1.5 million.
What can you do?
Contact your U.S. Representative and Senators and urge them to support funding for cerebral palsy research. You can find your elected officials here.
Categories: Autism, Cerebral Palsy, Children With Special Needs, Disability, Down Syndrome, Must Read, SPD, Special Needs, Special Needs Parenting, To The Max | Tags: cerebral palsy, Disability, health, Special needs
Thursday, March 21st, 2013
In honor of World Down Syndrome Day 2013, TODAY co-anchor Savannah Guthrie has written a post about her Uncle Pierce. Please share it! It’s not just about a beautiful relationship—it’s about all the awesome people with Down syndrome bring to the world.
On March 21, we mark World Down Syndrome Day — an opportunity to draw much deserved attention to a group of wonderful people that are contributing to their communities in exciting ways. For me, this day is personal; it’s a chance to remember and reflect on an individual who has had a huge impact on my life, my Uncle Pierce.
Pierce Franklin Long, Jr. was born on July 5, 1933. He was my mother’s older brother, my grandparents’ first child, their only son. Because he was born so close to the Fourth of July, my grandmother used to call him, “my little firecracker.” And it’s true that Pierce always sparkled with life and personality, with humor and charm.
Pierce was born with Down syndrome, but back then, the doctors didn’t really use that name for this condition. Attitudes were different, medical knowledge woefully incomplete. My grandparents were told he would never walk or talk, or be like any other little boy. They were told he likely would not live into adulthood. It was common practice then to put a child like Pierce in an institution.
My grandparents had a different idea.
Because of their vision and determination, Pierce grew up the center of love, attention and devotion in a warm and loving family. When his two little sisters came along (my mother one of them), they adored him, protected him, learned from him and taught him. He flourished. My mother says she can remember the elation the family felt when Pierce first learned to tie his shoes, to tell time, and later to read and write. These were milestones then. Today, I marvel at all that people with Down syndrome are able to achieve. I wish my grandparents were alive to see it.
When I was in high school and college, my grandparents and Pierce came to live with our family. I feel so lucky to have spent those years with him. He had many interests and passions. He was a devoted basketball fan – prone to wear his favorite basketball uniform day after day. He was affectionate, always ready for a hug and a kiss. Full of impish humor, he enjoyed teasing my sister and me, by asking us repeatedly how old we were, then guessing wildly inaccurate ages just to make us laugh. (“Are you 36?” he would ask us little girls with a mischievous smile.)
His nickname for me was “Vinny,” and he had a way of charming everyone around him. When I was a self-absorbed teenager, breezing past him or constantly on the phone, he would call out, “oh Vinny, your darling Uncle Pierce is talking to you!”
He was sensitive and emotionally wise. When my father died suddenly, our family was shattered. Sometimes, it was only Pierce’s simple kindness that could soften our grief. “I remember Charlie,” he would say. “I’ll say a prayer for him.”
Pierce reminded me every day what matters in life: goodness, gratitude, enthusiasm, warmth. He lived to a ripe old age with many friends and admirers. This day is close to my heart because he is close to my heart, and always will be. I hope people will take the opportunity to get to know those with Down syndrome who are living, working and like my uncle did, flourishing in their families and communities.
Photo courtesy of Savannah Guthrie
Categories: Autism, Cerebral Palsy, Children With Special Needs, Disability, Down Syndrome, Must Read, SPD, Special Needs, Special Needs Parenting, To The Max | Tags: Down Syndrome, Savannah Guthrie, Uncle, World Down Syndrome Day 2013