Posts Tagged ‘
Down Syndrome ’
Thursday, April 25th, 2013
People with disabilities are twice as likely to become victims of crime as as those without disabilities, per The National Crime Victim Survey. What doesn’t seem to have been studied: How often people with disabilities are likely to be harmed by police who are not aware of how to handle them.
This is an issue recently thrust in to the public eye with the tragic death of Robert Ethan Saylor, a 26-year-old with Down syndrome. As is widely known by now, back in January Saylor was at a movie theater and refused to leave because he wanted to see the next show. After authorities were called, Saylor resisted attempts to be removed and grew agitated. The officers pinned him down on his stomach and handcuffed him, letting up only when Saylor showed signs of distress. His death was ruled a homicide, by asphyxiation.
His death, and the lack of criminal charges pressed against the officers, has caused an uproar in the Down syndrome community. But it’s also been incredibly unsettling to others who have loved ones with disabilities. It’s made parents like me hyper-aware that adults who are unable to communicate as others can, who get upset by certain situations and who may not be able to follow orders are at risk of being considered disobedient by police, risking harm. Max, who has cerebral palsy, will grow up to be that adult, most likely. And what if, even now, he got lost in a crowd? What if he wigged out? What the average policeman know how to handle him? No, I think.
It was heartening to read that this week, New York State rolled out the first ever sensitivity training for police offers to help them better interact with people who have developmental disabilities. Although the First Responders Disability Awareness Training is not mandated by the state, New York’s Developmental Disabilities Planning Council pushed for funding it. Currently, as seems to be the case in other states, New York has no protocol for arresting and charging suspects with developmental disabilities.
The American’s With Disabilities Act website offers publications that inform law enforcers about handling people with disabilities. How many police officers actually read them, or get any training, is a big, worrisome question mark. Sometimes, decency and common sense alone won’t help.
I have enough concerns about how my son will navigate this world as he grows up. I hope that authorities in cities and states around the country learn from the tragedy of Robert Ethan Saylor and, in the coming years, start training their police to better understand people with disabilities—and do right by them.
Hopefully, non-profits that advocate for the disabled will keep pushing for this. People who have loved ones with disabilities can call their local police precincts and ask for this. Meanwhile, I’ll be holding Max’s hand extra tightly when we’re out.
Image of police hat and club 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: cerebral palsy, Disability, Down Syndrome, health, Robert Ethan Saylor
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
Monday, February 25th, 2013
You may have seen the ABC News report back in November that exposed the Judge Rotenberg Educational Center in Canon, Massachusetts for using electroshock therapy on students who misbehaved. Disability advocates had been fighting the practice for years; now, massive public outcry ensued. This month, state officials are finally attempting to more closely regulate the facility—which is resisting.
Said an attorney for the Center, “There’s plenty of scientific evidence to support (the use of aversive therapies) and the court continues to approve the treatment.” He also noted the the only other alternatives would be restraint or large amounts of antipsychotic drugs.
The school, open since 1971, is considered a last-resort facility for youth with severe behavioral disorders, including extreme aggression and self-mutilation. It also houses children and adults with intellectual disability. Reportedly, this is the last school in the country using electric shocks as a discipline technique, which disability advocates have described as “state-sponsored torture.” There’s nobody regulating what sort of voltage is used; in fact, back in December the FDA sent a warning letter noting that the Center was using unapproved devices.
It’s mind-boggling that this sort of inhumane practice has been allowed to go on. Our understanding of how to help kids and adults with intellectual disability has come a long way in recent decades. There are ways to help control behavioral issues that do not involve frying someone’s limbs or brain. These are kids and adults with disabilities who are getting treated this way, not criminals. Hopefully, authorities will end the practice very soon.
Hearing about stuff like this as the parent of a child with special needs is a shock to the system. It reminds you that there are still people out there who consider kids with disabilities lesser human beings, ones who can only be controlled with cruelty. It reminds us that as parents, and bloggers, we need to continue to help the world understand who are children are—and why they deserve the same respect any child deserves.
Categories: Autism, Cerebral Palsy, Children With Special Needs, Disability, Down Syndrome, Must Read, SPD, Special Needs, Special Needs Parenting, To The Max | Tags: autism, cerebral palsy, Disability, Down Syndrome, health, Special needs
Tuesday, November 6th, 2012
How does inclusion help kids with special needs? As their parents, we know that; what may be less clear to other parents is how inclusion benefits their kids. Sean Adelman, an orthopedic surgeon in Seattle and advocate for exceptional kids, is here to spread the word. He and his wife, Susan, have three children, including one with Down syndrome. Adelman wrote the Sam’s Top Secret Journal series to show the similarities the lead character, who has Down syndrome, shares with other kids—and to explore how differently-abled people benefit society. (More than 25 percent of proceeds from the books benefit inclusion non-profits and/or charities for wounded soldiers.) This is what he had to say:
How does inclusion benefit everyone? Traditional thinking is that parents want inclusion for their special education children because that’s who it is supposed to benefit. As the father of a beautiful 16-year-old-girl with Down syndrome, Devon, I have learned that it’s not a “one way street” as has been traditionally espoused.
I would love to say that I used my deductive reasoning as a surgeon to figure this out. The truth is that I have learned this from my wife and all three of my children. Seeing how this has affected our lives it has occurred to me that there are at least five reasons why inclusion is important for everyone in the classroom. Here they are, in no particular order:
Role modeling. We should start with the obvious (not because of the title, either). Inclusion is good for the special education students. We thought inclusion was a good idea when Devon was little, mainly because we wanted her to go to school with the neighborhood kids. As it turned out, that was a good idea. Learning how to get along with her friends in a school setting is part of growing up. If you are not interacting with your friends and peers you don’t learn how to act/behave around others. The world doesn’t come as a contained classroom.
Diversity. Our society is diverse and children who learn not to be afraid of our differences are more accepting and more tolerant. Differences are not just in our appearance but also our abilities. There is a mutual benefit to integration; children exposed to the many faces of humanity grow up to be better, more well-adjusted adults.
Friendship. When we bring different kids together they can learn to become true peers. If the only knowledge regular kids have of the special education children is the “hi” in the hallway they don’t learn what kids of different abilities are really like. Our daughter likes the same music, enjoys the same sports, even likes the same boys (although as daddy I occasionally have some issues with that). They are more alike then different. Friendships are crucial to our social development and these are teachable moments that are very difficult to accomplish later in life.
Parents. Many times as parents we feel this anxiety that what our children our experiencing is unique to their abilities and/or differences. This anxiety can lead to decisions based on the fear that “we have to do something.” When our children interact in an inclusive setting we get a different perspective. An included parent is allowed to see that what our kids our experiencing is in fact what the other kids are going through. Knowing what is “normal” can help us to deal with the daily stress that affects all parents. For example, if we never learned that the hormonal imbalances that make all teenagers crazy was a normal developmental stage we would think our children needed a neurosurgeon and an MRI of their brain. That is not to say that parents of children with special needs don’t have unique needs, it is to say that by being in an inclusive environment it’s easier to see what’s “normal.”
Education. Although teaching to a classroom with many different levels can be difficult, we have found through the years that our teachers have been very appreciative. That is to say, all of the places where we have been in an inclusive setting the extra person who assists with the special education student brings another assistant to the classroom. It also can provide an environment where children can learn intangible lessons about assisting other students. Teaching someone else is an amazing way to gain a better understanding of the material. We often find that the techniques we learn to help children with learning disabilities can be very useful to the other children in the classroom.
The common theme through all of this is that our world is a diverse world. We can’t play chess if the only player we know is the Rook. If we learn all of the players, embrace their strengths, and learn their weakness we can become something amazing. Playing, teaching, parenting, and helping without regard to who we are, what we look like or how we speak is what we should all strive for.
Monday, October 22nd, 2012
In honor of Down Syndrome Awareness Month, I’ve lined up a few guest posters. This one is by Hallie Levine Sklar, a mom of three and (fabulous) writer who blogs at Visions of Johanna.
A couple months ago, I was playing at the beach with my three small children—Johanna (Jo Jo), aged 4, Teddy, aged 3, and Geoffrey, then 15 months—when a 40-something woman came up to me.
“Your daughter is absolutely gorgeous,” she said beaming. “I’ve been watching her for a while.”
“Thanks,” I said. Jo Jo is four, and has Down Syndrome. People often stare at her. It might be because she has Down Syndrome, but I also suspect it’s because she’s so darn cute. Today, she was wearing a hot pink bikini and strutting around the sand singing. Her blonde hair was pulled up into two tight pigtails and except for an occasional snot bubble she looked pretty adorable.
The woman kept standing there, awkwardly grinning. “I’m pregnant!” she finally said.
“Great!” I exclaimed. “How far along are you?”
“About three months,” she said. Then she burst out: “I think my baby has Down Syndrome.”
So that’s what this is about, I thought. “Why?” I asked.
“I didn’t do any prenatal testing” she said brightly. “But since I’m 42, I think it’s very likely.”
“Um,” I said, really not sure what to say. “Not necessarily. I was only 34 when Jo Jo was born.”
“Well,” the woman said, “I have to admit, I’ve been so worried about Down Syndrome that it’s been keeping me up at night. But after seeing your daughter, I feel so much better. She’s such a little angel.” Her voice lowered. “In fact, I think that you’re at this beach now for a reason.”
“And what would that be?” I asked distractedly. Jo Jo had grabbed Teddy’s shovel and pail and was pirouetting around her younger brother, who was now screaming “No, no Jo Jo!” and trying to get it back.
“God sent you here,” she said. “So I wouldn’t be afraid of having a baby with Down Syndrome. What a beautiful, special little girl. What a gift.”
“Um, yeah,” I said, thinking, that’s exactly what he did, honey, when Jo Jo whirled around and whacked Teddy right in the head with the sand pail. He wailed. She smirked and then whacked him again.
“Jo Jo,” I yelled, trying to separate them.
My daughter looked at me and beamed at me with her sweetest, most heart-melting smile. “Sorry Teddy,” she said, embracing him with a warm hug. Then she yanked at his hair so roughly he fell face down in the sand.
Mass pandemonium ensued. Jo Jo got a time out. As mortified as I was by Jo Jo’s behavior, I was kind of glad the woman had seen it. Not such a little angel now, is she? I wanted to say, but instead I shrugged my shoulders apologetically. “Five o clock meltdown,” I said brightly. “I think it’s time for us to go home.”
The woman stared at Jo Jo, wide eyed. “I guess,” she said finally.
When I gave birth to Jo Jo, people came out of the woodwork to tell me how “special” kids with Down Syndrome were. They were so sweet, so lovable, always so happy and up for a snuggle. So’s my Labrador retriever, I wanted to say snidely, but I kept my mouth shut. I knew people meant well, but the stereotype of the cheerful, cuddly kid with Down Syndrome was hard to swallow.
Now, four and a half years later, I can say with relief that those adjectives don’t really describe my child. My husband Jamie and I actually realized pretty early on that Jo Jo was one tough cookie: when she was five days old, she shocked the entire NICU when she pulled her post-surgery feeding tube straight out of her nose. When one of the nurses proclaimed her a hellion, we laughed. “You bet she is,” my husband said cheerfully. “She’s our daughter.”
And it’s true. While Johanna may have 47 chromosomes, her full genetic makeup comes straight from us, her parents. She’s got my husband’s impish grin and his impulsiveness. She’s got my pointy ears, my stubbornness, and, quite frankly, my Jewish princess tendencies (especially the love for shopping!) There are people out there who refer to individuals with Down Syndrome as possessing a “magic chromosome” or a “gift from God.” But we think Johanna is magical and a gift simply because she is our adorable, bubbly, vivacious, yummy little girl.
In fact, I think painting kids with Down Syndrome as innocent little angels has the potential to be dangerous, or at least to do them a disservice. It refuses to acknowledge that kids with Down Syndrome are actually human beings with issues and concerns of their very own. I know Jo Jo tries to please, and be a good girl, but like any child, often it’s hard. She’s not as verbal as other kids her age, and because of that, sometimes she communicates her frustrations by say, hitting one of her younger brothers, or throwing something since she’s not able to articulate what she really wants.
I wish I had been able to say all of that to the woman at the beach, who probably left that day after witnessing my kids’ Extreme Meltdown wondering if she really still wanted to reproduce. I want to tell her that at the end of the day, it doesn’t matter whether your child has Down Syndrome or autism or ADHD or any other developmental or behavioral issue. Your child is your child first, and anything else is secondary.
Sure, Jo Jo is a child with Down Syndrome, just like her brother Teddy has a severe peanut allergy and her other brother, Geoffrey, has albinism, a condition that’s left him visually impaired. She is who she is—not an angel, or a divine gift, or anything other than a flesh-and-blood little girl who loves singing and dancing and twirling around the room with her grandmother’s old silk scarves.
And I wouldn’t have it any other way.
Read posts from Ellen at Love That Max:
A Bill of Rights For Parents Of Kids WIth Special Needs
Top 20 Reasons Moms Of Kids With Special Needs Rock
20 More Reasons Moms Of Kids With Special Needs Rock
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, Down syndrome awareness month 2012, health