Posts Tagged ‘
special needs ’
Friday, June 13th, 2014
Tomorrow marks opening day of the 2014 Special Olympics USA Games in Princeton, New Jersey and 17-year-old Whitney Lackey of Lebanon, Tennessee is gearing up for competition. Diagnosed at 2 months with tuberous sclerosis complex (TS or TSC), Whitney is participating in her first ever national competition.
A condition that affects about one million people worldwide and 50,000 people in the U.S., TS is characterized by non-cancerous tumors in many different organs. Seizures, developmental delays, intellectual disabilities and autism are also associated with the disorder. Whitney’s first seizure was what brought her to Vanderbilt Children’s Hospital the day she was eventually diagnosed. Through MRI testing, the doctors discovered lesions on her brain and a black light revealed white spots on her skin—another sign of TS.
The Lackeys took their daughter to a clinic dedicated to tuberous sclerosis at Cincinnati Children’s Hospital (though Vanderbilt opened a clinic later in 2007). “Her doctors gave us a very grim diagnosis,” says Sharon. “They said she would probably never walk and never talk.” Still, Whitney began occupational and physical therapies at just 8 months to help treat her developmental delays. At 21 months, she took her first step, but it was not until age 4 that she walked well. Yet her biggest obstacle was her constant seizures.
After much experimentation with different medications, the doctors managed to get Whitney’s seizures under control. “She went from having 50 a day from the age of two months until age 4,” says Sharon. “In the last 5 or 6 years she’s been seizure-free.” Though she still has non-malignant tumors in her brain, left eye, and kidneys, she is in stable health and will be representing Team Tennessee at the Special Olympics in the bocce event. “If you had told me back then that she would be going to the USA Olympics…,” Sharon sighed.”It’s just a miracle.” While Whitney is developmentally behind, she is a happy, social teen excited to spend time with her friends at the Olympics.
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“She just loves to be outside and loves sports of any kind,” said Sharon. In fact, bocce was not Whitney’s first sport. She was first on the local Special Olympics swim team and it was her swim coach, Melody Engle, who got Whitney started in bocce. “We’ve always been her biggest fan and proud of her and it just makes us happy that other people get to see what we see and realize how special she is,” said Sharon.
As for her father, Brent, there is no better Father’s Day present than to see his daughter succeed and the Lackeys have joined up with Novartis and the TS Alliance to raise awareness about the disease and the need for more education and research. “Other people whose kids are diagnosed with TS should know that it’s not all gloom and doom,” says Sharon. “You can lead a very happy, positive, fun, active life.”
Follow the Lackeys and their Special Olympics experiences on Tumblr.
Click here for more information about the TS Alliance.
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Friday, March 21st, 2014
Even your average three-year-old can suss out that my daughters didn’t come into our family the “old-fashioned way.” My beautiful girls are from China, and my husband and I aren’t. But inquisitive three-year-olds just ask why we don’t “match”—it’s usually the adults who make the weird comments and questions about my family—like “How much did they cost?” or “It’s terrible how they throw away kids there.” Or my least favorite comment—”I couldn’t love someone else’s child like my own.” Those kinds of people seem even more confused when they discover that I willingly—and eagerly—adopted a little girl who had a known medical issue, a special need.
My youngest daughter has microtia, where her right ear didn’t grow the way it should. She has hearing loss on that side, because she has no ear canal and a tiny, misshapen “little ear.” It’s a relatively common birth defect, and Paul Stanley of KISS is the most famous person who has it. (And coincidentally, he’s part of the reason we knew we could handle this particular issue. As my husband said, if Paul Stanley can rock out with a small ear, there’s no limit to what our daughter can do.)
But even close friends and family expressed misgivings when we told them we were thinking of adopting a child with special needs—saying that we already had a “perfect” daughter, and wasn’t that enough? But we knew our family wasn’t complete, and there were a number of reasons why we chose the special needs route.
• We wanted our kids to be close in age. If you follow China adoption at all, you’ll know that the wait for a child without known medical issues has grown exponentially. When we put in our paperwork for our oldest in 2004, we waited nine months before we finally held her in our arms. The dossier for our youngest went to China in April 2007. If we hadn’t found her on the special needs list in 2008, we would still be waiting today—and still a long while from being matched with a child.
• The stories of what happens to special needs kids are heartbreaking. As anyone with a child with special needs knows, even here in the U.S. you often have to fight hard to get your child the help they need to reach their full potential. For a child like my daughter, without anyone to fight for her and in a country that stigmatizes even small differences like an extra finger, it would have been catastrophic. It would have meant virtually no education, and an extremely limited future. I definitely did not adopt to “save” a child, but based on what I’ve read (check out Kay Bratt’s excellent Silent Tears for a vivid depiction of life in a Chinese orphanage), I know my daughter would never have had the opportunity to become an artist or a gymnast or a scientist (all her current potential careers).
• We could choose. This is a mixed blessing, though. On the one hand, we could research each of the special needs extensively and talk with our agency about what we felt comfortable handling—a luxury I’m sure that many parents wish they had. But the reality was that we were given a choice of two children—and saying yes to our daughter meant saying no to a little boy who had more severe issues. It took a year before I had the courage to ask my social worker what happened to that little boy. Our agency wasn’t able to make a match, so he went back into the pool of children with special needs. She said that he was likely reassigned to another agency, and that she thought he may have been matched elsewhere. But to this day, I wonder and worry that my choice doomed him to a life without a family.
• Everything in life is a gamble. That’s not to say that we weren’t worried. We knew of children with microtia who had complete hearing loss. More common are kidney and facial malformations that often come hand in hand with microtia. The first several minutes with our daughter were terrifying, after my husband squeaked a toy behind her and she didn’t seem to register the noise at all. It was only an hour later, when she turned her head toward the sound of a baby crying in the hallway, that we sighed with relief.
But if we’d had biological children there would have been no guarantee that they’d be “perfect.” Within our gene pool, there’s autism, brain aneurysms, heart defects and other problems that have required therapies and medical interventions. And as older parents, with a mother who has medical issues of her own, we would have been rolling the dice on the health of our baby anyway.
Like every other mom, once that baby was placed in my arms, I knew I’d do anything for her. And I’d choose my beautiful, spunky, wild daughter over and over and over again.
Read more about special needs from our April issue of Parents.
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Image: Mother and baby holding hands by totophotos/Shutterstock.com
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Wednesday, March 12th, 2014
In the April issue of Parents, we explore the world of special needs–a world we’re all living in, diagnosis or not, now that children of all abilities are integrated into our communities more than ever. We’ll be covering this topic in many ways over the coming weeks. Today’s post is from Jim Davis, who wrote an article in our April issue about what to do when your child receives a serious diagnosis. Jim is a father of four, including 6-year-old Jake, who has neurofibromatosis. (A younger Jake is pictured at right with his mom, Andrea.) He wants to share how his son’s diagnosis has affected–and in some ways even improved–his family. For more from Jim, go to MoreDifferentStuff.blogspot.com.
It’s surprising how differently parents of sick kids and parents of special-needs kids can feel about the conditions their children have. Some say they hate their child’s illness or their condition and that, if they could, they would take it away in a second. Some have a hard time imagining their child without the condition and say this is just how their child is. Others say they wouldn’t change anything about their child — not for money.
Whether we’d like to or not, my wife, Andrea and I can’t change the fact that our boy, Jake has Neurofibromatosis (NF). Raising a special-needs child requires extra work. It takes extra time and it causes extra worry. Jake’s condition is pretty mild. But parents of kids with special needs are betting on the long run and they’re hoping all of that “extra” also makes a family that’s extra strong.
Every parent works to teach their children and to help them to grow. But special-needs kids and their parents have to work harder to reach the same benchmarks as typical kids. Setbacks come more often and the possibility of compounding failures is ever-present. Jake’s homework sometimes takes five times as long as it would if things were different. So we devise schedules and we make charts. We bargain for progress and rewards. Because things take more time with Jake, we keep an eye out for chances to spend “catch-up” time with Alli, Lindsey, and Brooke (Jake’s sisters), and we’re careful to avoid taking on too many obligations. We’re also training ourselves to notice the things that are hard for Jake as well as the things that he has a knack for. We try to work on the weaknesses and emphasize the strengths.
The good news is that all the extra work, the worry, and all our extra carefulness, borne from the real possibility of failure, these things are all making Andrea and me better parents. We’re not great parents but we’re alright. And we are better than we would have been if NF hadn’t been a factor. And we’re not just better parents to Jake, but to all four of our kids, because the things we figure out while we’re working with Jake can be applied as we work with our girls.
This concept extends beyond the families of special-needs kids, and out into our communities. Planning parks, businesses and neighborhoods for people with a wide variety of abilities and disabilities takes extra work. It also makes better communities. It makes better citizens too. The more opportunities people have to interact with people who face struggles that are different but no-less real than their own, the more we build compassion and understanding. This is a very good thing, but I think it does something even cooler: it inspires. Seeing people who have to work and sacrifice to have the life they want, who are willing to work hard at things that are easy for many people- that reminds the rest of us of the simple fact that building the life you want takes work. Their determination inspires us to move toward the lives we want to have. It reminds us that being satisfied with a life of comfort and convenience is a cop-out. The people we admire most have not accomplished great things by slipping it into neutral as soon as things got comfy.
So while I wouldn’t have chosen that Jake have NF, because it creates a lot of difficulties for him, I’m grateful for Jake exactly as he is and I wouldn’t trade him for anything or anyone. I’m also grateful for the way NF has shaped our family. I still worry about what the future may hold for Jake, but for today, we’re solid and I’m grateful.
I’m grateful for the love and the constant support of our family, neighbors and friends. We have a lot of people who love us. We also have people who don’t even know us who are working to find a cure for our son’s condition. We are not alone. The people at the Children’s Tumor Foundation have designed some amazingly fun and creative ways to fund research into NF. Sometimes they run marathons. Sometimes they run a Porsche around the track at Daytona. And sometimes they run around the city in their underwear. But it’s all for the same purpose: to raise money to fund research for treatments and one day, for a cure.
So Jake has Neurofibromatosis. And the older he gets, the harder it becomes to draw the line between the boy and the condition. This is not because NF defines him; it doesn’t. There’s a lot more to Jake than NF, which is good to remember because it means, by definition, that Jake is bigger than NF. But the daily struggle he has with NF is clearly shaping the person that he is.
We often describe people by the things they have accomplished or the things they have overcome: “college graduate”, “war veteran”, “cancer survivor”, “mother.” Jake has NF and as time goes on, our family will do the extra work NF requires. And because of that we will grow stronger, more dedicated and closer than we would have been without NF. Hopefully our fight with NF can be a gentlemanly one. Whether it is or it isn’t, we’re sure to lose some skin, but we’re going to be alright. And besides, it’s the tough fights that make you who you are.
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Friday, November 22nd, 2013
According to the CDC, 1 in 88 people have an autism spectrum disorder (ASD). The prevalence has increased ten-fold over the last 40 years. There is no cure, but there seem to be as many treatments as there are manifestations of symptoms of the disorder. On November 14, the David Lynch Foundation and Joey Lowenstein Foundation co-sponsored a webinar called “Autism, Meditation, and Stress” to discuss transcendental mediation as a potential treatment for those affected by ASD—one that is non-invasive, non-medical, and works to help those with ASD as well as their families.
Transcendental meditation is the name of this treatment—truly a practice or technique to quiet the mind. While transcendental meditation itself is not new, the initiative to bring the practice to those on the spectrum has taken off in the past couple of years. A panel of experts in the fields of autism, psychiatry, and neuropsychology, gathered to vouch for the merits of meditation for this particular population.
“Those with ASD are in a state of chronic stress,” explained David Black, Ph.D., director of the Center for Autism Assessment and Treatment. While at this time the benefits of transcendental meditation are largely anecdotal for those with ASD, the research conducted with people who suffer from Post Traumatic Stress Disorder show that this practice settles the sympathetic nervous system, can reduce blood pressure, and lessens reactiveness to stimuli. The experts emphasized that ASD is a stress-related condition since the four components of stress are novelty, unpredictability, perceived threat, and low sense of control. It’s the sensitivity to all of these that make those with ASD “wired to be stressed,” according to William Stixrud, Ph.D, a clinical neuropsychologist and President of the Stixrud Group.
But how does TM work to relieve this stress? What does it mean to meditate? Is it just sitting quietly in a room—is that meditation? Transcendental Meditation is taught in seven steps, usually over a four-day period. Anyone who wants to learn will be paired with a certified TM instructor—of which there are thousands in more than 200 cities nationwide. The teacher helps an individual choose a mantra that custom-fits him or her and teaches the student how to use the mantra to access and inner quiet. It all sounds very vague, but I trust that you have to try it to understand it. I haven’t tried it myself, but I’m intrigued enough that I hope to meet with a TM instructor in 2014. I could certainly benefit from increased focus and decreased stress as much as anyone else.
It may sound counterintuitive that a child who cannot sit still would be able to meditate, but families report that after working with an instructor their child can do it—albeit only for a few minutes at first, but this will grow over time. Many families have already seen changes in the behavior of their children on the spectrum. Roberta Lowenstein and her 17-year-old son Joey—founders of the Joey Lowenstein Foundation—meditate together. Joey is nonverbal and when he first started to practice TM two years ago he was only able to sit for about 5 minute spurts. But after eight weeks, Joey was able to meditate for 20 minutes twice a day. Joey said (through his letterboard) that TM really helps him. He feels calmer. His mother has noted less outbursts. His grades in school have improved.
Roberta was shocked that her son was even able to sit down long enough to meditate. But he can, and he does. Children with ASD are able to meditate and find the calm within. “[The mind] is like the ocean,” said Bob Roth, Executive Director of the David Lynch Foundation. “On the surface, the it’s is busy and noisy, but deeper, a calm exists. We use TM to access a deep state of calm which is already present in a person.” Scientifically, this meditation enlivens the prefrontal cortex of the brain, which allows for more flexibility, sociability, and ability to cope with novelty. Sounds like a good matchup.
While this webinar focused solely on TM, it isn’t the only kind of meditation that can benefit children with ASD. In the past decade experts have embraced the idea of teaching a form called mindfulness to children with conditions including ASD and ADHD.
More research is necessary, and you do have to have the resources (TM costs around $375 per child—although scholarships are available) to match your child with a certified TM practitioner, but this practice may be worth exploring based on its tested effects on other populations. After all, TM doesn’t produce the side effects that accompany drugs and some other experimental therapies. As one mom said during the webinar, “After one month of meditating, I realized that I couldn’t remember the last time Alex had a tantrum.”
Image: Courtesy David Lynch Foundation; Students meditating at a San Francisco school
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