Friday, June 29, 2012

Introducing the Down Syndrome Radio Podcast!

from Down Syndrome Radio's Introduction:

When my friend, Mark – fellow Down Right Awesome dad and a podcast veteran – noted the lack of regular podcasts about DS and suggested that we just do our own, I jumped at the chance….well, I was a little hesitant at first, but with a bit of arm twisting, Down Syndrome Radio was born!

We are doing the DSR podcast to share our stories about parenting children with Down syndrome – from a dad’s perspective.  We are definitely not experts, but hope that we can help other parents going through similar experiences.

At this point, we have recorded four episodes and plan to continue to try to record about once per week, shooting for about an hour per episode.  We would love to incorporate guests as we progress and the topic allows (less work for us!).  We have a pretty good grasp of the format for the show, but we will continue to experiment as we go forward.  Please, feel free to leave comments or send us email – let us know what works or doesn’t, tell us your story, ask us questions….anything!  Enjoy!

Podcast Episodes:

Thursday, June 28, 2012

Models wanted for Peterborough Down syndrome exhibition

from Peterborough Telegraph by Jim Baker:
Terry Harris is father to Lucy who has Down’s Syndrome. He believes fervently that people with Down’s Syndrome enrich and enhance our society and our lives.

Terry said: “Lucy having Down’s Syndrome never really fazed us. We often think we are extremely lucky as she does not have any of the major problems often associated with Down’s Syndrome.
“That said, she does have her problems and they are sometimes difficult and upsetting. But on the whole Lucy has grown into a lovable bundle that we think completes our family. There’s no doubting Lucy has obstacles ahead but we as a family are supportive of each other.
“The BIG picture is our way of sharing our experiences and letting every family, around the world touched by Down’s syndrome, share theirs.”
The DS The BIG Picture exhibition aims to help everyone from new parents, to people who just want a better understanding of the condition, an understanding built on fact and not misconceptions. Another key component of the campaign is to educate society on the whole and correct dated and negative stereotypes of people with DS.
In support of the exhibition Terry is offering free family photo-sessions, open to people/children with Down’s Syndrome and their families. The sessions are on a first come first serve basis offering time slots of around 35 minutes at Studio One, Ailsworth.
The photographs will be used in The Big Picture exhibition and attendees will also receive a free CD of the pictures taken or can have them printed by the studio at a discounted price.
They will also receive a 25 per cent discount on any future family portrait sessions at the studio.
The photo shoots will take place throughout June/July this weekend. Siblings are welcome but model release forms will need to be signed for the images to be in the BIG Picture exhibition.
The exhibition will coincide with World Down’s Syndrome Awareness Day 2013 (March 21) and will run from March 16, 2013 to May 25, 2013 in Peterborough, at a city centre venue (to be confirmed).
Peterborough United Chairman Darragh Macanthony has also donated £2,000 to the exhibition and offered to support it in any way he can.
DS The Big Picture has also secured the support of the largest charity involved with Down’s syndrome, The Down’s Syndrome Association.
They currently have over 7,000 members across 140 plus affiliates in the UK alone. They also have an exceptionally large presence around the world due to their World Down’s Syndrome International organisation.
A truly unique feature of the campaign is the larger images which aren’t just one picture, but made up from as many as 10,000 individual images which in turn will have a huge amount of information embedded in them from simple comments about Down’s syndrome to links for further reading and information.
If you would be interested in taking part in the exhibition contact Terry as soon as possible on 07747 606996, or at

Wednesday, June 27, 2012

Summer camp gives those with Down syndrome a chance to dance

from News OK by Ben Luschen:
It was Caleb McFarland’s time to shine.
McFarland has attended the Dance and Down syndrome Music Theatre Camp, held annually at the University of Central Oklahoma, multiple times in the past, but now all eyes were on him.

For the camp’s final performance on June 15, the dancers performed selections from “Grease.” McFarland was the featured performer in “Greased Lightning,” the show’s climax.
Apparently, learning the dance moves made famous by John Travolta was not as hard as it looks.
“It usually takes 30 minutes,” McFarland said. “For me it takes two. The dance is simple.”
Still, chance favors the prepared, so McFarland worked tirelessly throughout the camp to perfect his choreography.
“It was 24/7, four days,” he said. “I practiced a lot.”
The Dance and Down syndrome Camp, which this year served youths as young as 13 to adults as old as 36, is a weeklong day camp held every summer to give individuals with Down syndrome a chance to participate in a theatrical production. The dancers spend the first four days of the camp rehearsing for their final musical showcase on Friday.
The theme of this year’s performance was “Grease,” but past themes have included Disney Channel’s “Camp Rock,” and the “High School Musical” trilogy.
Robyn Pasternack, an assistant professor of ballet at UCO, started the camp five years ago. Her daughter, Haley, has Down syndrome. This was the first year she was old enough to participate in the camp.
Pasternack originally started the camp with her daughter in mind.
“I wanted to know what was in store for my daughter when she gets older,” Pasternack said.
“That’s what really struck me. Here she was 5 or 6 years old and I didn’t really know what the future was going to be for her.”

After five years of teaching dance at her camp, Pasternack says she’s seen the great amount of potential that those with Down syndrome have, both as performers and as people.
Many of this year’s campers had been involved in past versions of the camp. Merradyth McCallister, the camp’s behavior specialist and mother of one of the campers, has seen the camp progress.
“They’ve gotten so much better every year working at their abilities,” McCallister said. “I mean, it helps them build up so much confidence that it leaks out into the other activities that they do.”
Tyler Sorum, a psychology student at UCO who works at the camp as a movement specialist, says he is amazed by the progress the performers have made in just the week they were at the camp.
“When we first started,” Sorum said, “listening to them sing was kind of a scary situation, but they definitely have proved to me that they have a range of voice. It’s interesting to see all the different kids and the different aspects to them.”
After this year’s performance, which also included the songs “Summer Nights” and “We Go Together,” the audience begged for an encore. The dancers, of course, obliged.
Kathryn Taylor, who played Rizzo in the musical, says “Grease” ranks among the better performances the camp has ever held.
“I mean, I’ve been coming here for five years,” Taylor said. “It was great.”
Though many of the campers had shined individually, McFarland says the credit for the day should go to everyone who participated in the event.
“This experience is about being all together,” McFarland said.

Tuesday, June 26, 2012

Gaps in the Map Survey Released by DSAIA, NDSC & NDSS

National organizations partner to help ensure access to support and information 

Down Syndrome Affiliates in Action (DSAIA), the National Down Syndrome Congress (NDSC) and the National Down Syndrome Society (NDSS) have partnered to ensure that all families have access to support and information from a local Down syndrome affiliate through the "Gaps in the Map" Project. The project's goal is to locate and document all Down syndrome support groups in order to identify what areas are not being served and then explore ways to provide that support to the "gap" areas.

We need YOUR help to make this project a success by doing the following:

  1. Complete this BRIEF survey before July 31, 2012 by clicking here.
  2. Forward this newsletter to all your friends in the Down syndrome community nationwide! Encourage them to fill out the survey!
  3. Tweet and share the survey link with other group leaders via social media!
  4. Talk about this project with at least one organization in the Down syndrome community today.
  5. Be creative! The more we share this project, the more families will receive the support and information they deserve!

Stay tuned for a variety of fun and cool ways to share this project with your friends and friend organizations. Click here for all the latest project details or visit us on Facebook!

For more information, contact Deanna Tharpe, DSAIA Executive Director, at or 701-425-7129 or Allison Wixted, DSAIA Gaps in the Map Chair, at or 804-920-9643.

Football and Cheer Camp with the Denver Broncos

Yet another longtime veteran of the game, Jack Del Rio, is already making a difference in his new community. The squad’s new defensive coordinator, along with the recently retired all-pro Brian Dawkins, spent the morning of June 23 coaching a pair of teams comprised of children with Down syndrome to an 18-18 tie at Valor Christian High School in Highlands Ranch.The third annual event at Valor was once again organized by former Broncos standout Ed McCaffrey, whose sons Christian and Max both starred on the gridiron this past year for the Eagles. The three-time Super Bowl champion receiver teamed up with the Global Down Syndrome Foundation for the event, giving those with the disorder a chance to shine and have some fun.
The game is the pinnacle of a two-day camp to give those with Down syndrome an opportunity to learn and play the game of football, while working with the former Broncos and a state-championship high school football team.
“Ed (McCaffrey) and I got together and we gave the (kids) a buddy that would be with them every day, take them through it, and get a good close relationship,” said Valor head coach Brent Vieselmeyer, who has watched the program grow each year. “Their buddy would help them out, get them lined up and then they would play.
“It was a great opportunity for our kids from just a Valor perspective of we really get to see kids being unselfish. You hear so many terrible things about this generation and here you’ve got kids that are trying to be something more than just themselves. It’s a pretty neat experience. It’s a blessing for them and frankly, for our team it’s the most fun they have, this event, all summer.”
The day featured everything from skydivers to the Denver Broncos cheerleaders, mascots Thunder and Miles, the Mile High Tumblers and Drumline and a celebration party afterward that featured a bouncy house, face painting and more.
“Coming out here, having these games, and just playing football period it makes their day every time they come out here,” said Gabriel Watkins, one of the buddies and a Valor sophomore who plays both linebacker and fullback for the Eagles. “It’s a lot of energy and a lot of work, but it’s great to see them happy.
“It feels good on the inside to let you know not only is our school getting things done like we said we would, but that I did something to help, and now I feel good because I actually did something positive not just for myself but for countless other kids.”
Not just for boys and young men, the Broncos cheerleaders also put on a halftime show with some young cheerleaders who have Down syndrome.
“While we held just a couple practices before the camp, the cheerleaders worked with the girls for over a month,” Vieselmeyer said.

Sunday, June 24, 2012

Foods for children with Down syndrome

In today’s three part series on diets for special needs, we will be taking a look at Down syndrome. Children with Down syndrome are at a higher risk than the general population for certain health concerns.
Eating nourishing foods can help reduce some of the physical symptoms and increase overall health. Brain physiology and common health symptoms will be covered first, followed by important foods to include in their diets and which foods to avoid and why.
Down syndrome is categorized as a condition in which a baby is born with an extra chromosome. According to the CDC the extra copy of chromosome, number 21, changes the brains normal development, causing mental and physical problems.
Information in the brain is transferred between neurons (synapses). Research has suggested that in Down syndrome the structure and function of the synapses are abnormal, causing cognitive defects.  It has been hypothesized that this abnormality is caused by one or more of the genes on the extra chromosome.
Reduced brain volume and smaller volumes in frontal and temporal lobes as well as the cerebellum also affect those with Down syndrome.
The American Academy of Pediatrics’ Committee on Genetics has noted that those with Down syndrome are likely to develop certain health problems. This is thought to happen as a result of body structures not developing normally.
Children with Down syndrome are likely to be overweight and have a higher risk of obesity. They burn calories at a slower rate and are frequently diagnosed with an under-active thyroid which can contribute to weight gain.
Gastroesophageal reflux disease (GERD) is common among children with Down syndrome.  Symptoms include heartburn, sore throat, regurgitation and chest pain.
Gluten intolerance and celiac disease is also widespread and can lead to nutrient deficiency and an impaired immune system if dietary needs are avoided.  
Finally, periodontal disease becomes prevalent in adulthood so it is important to establish habits to eat foods that will decrease its likelihood.
To keep obesity at bay, feed children nutrient dense foods and limit junk food without nutritional value. A good rule of thumb is to eat ‘real food’ found in nature, and avoid man-made ‘food’ as much as possible.
Include healthy fats such as coconut and olive oil and even organic, pastured, butter containing butyric acid and omega 3 fatty acids.
For an under-active thyroid, an excellent choice is iodine rich seaweed. Seaweed snack packs are great for lunch boxes and kids love the salty taste. It can be used in salads, sprinkled on other food or used as a wrapper for healthy snacks.
Foods rich in vitamin C may help keep periodontal disease at bay. Citrus fruits (for those not suffering from GERD), strawberries, green peppers and broccoli are great choices and make easy finger foods.
Anti-microbial foods such as garlic, onion, thyme, oregano, tarragon and cinnamon are great to use on a regular basis to help kill bacteria that lead to tartar and plaque buildup.
Trigger foods for GERD should be avoided. Common culprits are citrus fruits and foods high in sugars and fat including chips, brownies, cookies, creamy dressings, ice cream, fatty cuts of meat, fried chicken nuggets and french fries.
A food journal is a useful tool for tracking any symptoms; this will help pinpoint exactly which foods to avoid. It will also help track any correlation between gluten and symptoms of celiac disease (diarrhea, stomach aches, bloating, irritability, skin rashes and mouth sores). Carefully read all food labels since gluten can lurk in unsuspected places such as soy sauce and remember that ‘wheat free’ does not mean gluten free.
Because there is an especially high incidence of celiac disease among those with Down syndrome, I suggest avoiding the introduction of gluten containing foods until at least the age of 18-24 months when a child’s digestive system is more developed.
These guidelines will help create a great nutritional foundation. As children with Down syndrome grow and gain independence, they will have the right tools to make good choices on their own.
For older children with established eating habits, start by making small changes to their diet. Making a complete change overnight is likely to lead to resistance and fade quickly, but subtle changes over time will make it easier on the child and the rest of the family to adjust to new eating habits.

Saturday, June 23, 2012

For GOP star, mom, challenges go beyond Congress

Rep. Cathy McMorris Rodgers' life is like a well-conducted orchestra: Everything happens on cue in precisely the right note.
That's on most days. But other days she readily admits things don't always happen so smoothly.
"There aren't enough hours in the day. You always want more time," McMorris Rodgers says. "That's the continual challenge."
McMorris Rodgers is one of 76 women in the House of Representatives. She's the only woman in the House Republican leadership and has been mentioned as a possible running mate for Mitt Romney.
Elected in 2004 to represent the 5th Congressional District in eastern Washington state, McMorris Rodgers has climbed the ranks in Congress, serving on the House Energy and Commerce Committee and as vice chair of the House Republican Conference.
But like many, her work is only part of what defines her. Central in her life are her husband, Brian Rodgers, and their two children, 18-month-old Grace and Cole, 5.
McMorris Rodgers holds the distinction of being the only member of Congress to give birth twice while in office.
Cole Rodgers is the 5-year-old son of U.S. Rep. Cathy McMorris Rodgers and her husband, Brian Rodgers.
One Friday morning, she invited CNN into her home as the family was getting ready for the day. Like many working moms, she juggles the responsibility of a demanding career and duties of home life.
Her husband scrambles eggs on the family's kitchen island countertop, while the congresswoman sits down next to her daughter.
"Do you want some help? You want some help today," she asks Grace, taking the spoon. "There you go. Is that good? How about a little egg?" she asks.
On the other side of the kitchen table sits Cole. In front of him is a piece of paper with alphabet letters. He carefully reproduces the letters as his mom helps him sound them out.
"He's doing well. He's learned his letters. He knows the sounds to the letters and he knows all the uppercase. We're working on the lowercase, and he's starting to read, which is really exciting," she says.
Early years
Voters in Washington state have been able to follow the personal life of Cathy McMorris. She worked on her family's orchard near Kettle Falls, Washington. She's the first in her family to graduate from college, working her way through Pensacola Christian College in Florida.
In 1994, at age 25, she was elected to the Washington Statehouse. A decade later, she arrived in the nation's capital to serve in the U.S. House.
"I was first elected to Congress in 2004 and I was still single. I wondered maybe I would be single for the rest of my life," McMorris Rodgers said. "And then I met Brian. We got married a year later, and soon after that I was pregnant. Cole was born in 2007, and Grace was born in 2010."
Husband Brian is a retired Navy commander, serving 26 years in the service. His father was mayor of Spokane in the early 1970s.
Family challenges
When the couple found out they were expecting, they were both thrilled to be first-time parents.
"It was exciting to know I was going to become a mom. There's so much involved in becoming a mom, and it's such a special time, " McMorris Rodgers said.
Her pregnancy was uneventful until her eighth month when doctors said an ultrasound had revealed a blockage in her baby's small intestine.
"They told us, Brian and me, you should know that one out of three babies with this condition is born with Down syndrome."
They didn't have much time to process the news. The next day McMorris Rodgers went into premature labor.
"It was certainly on the forefront of our minds all during labor. It was OK, does my little baby have Down syndrome? "
Cole was born at five pounds, nine ounces. It wasn't immediately apparent if he was born with Trisomy 21, the extra chromosome associated with Down syndrome. Three days later the family received confirmation.
"Boy, that's tough news to receive. It's not what you dream. It's not what you expect. Yes, you're very excited to be a mom, and yet you're faced with a lot of the unknown. I think it's the fear of the unknown that is overwhelming at that point in your life," McMorris Rodgers said.
Personal cause
Since receiving the news, she has received a lot of support from her constituents and people in the disability community.
"I believe my eyes have been open. I just view life from a totally different perspective. I was welcomed by the disability community, and they see the best in what every person has to offer."
Her initial fear has been replaced with resolve. In 2008, she co-founded the bipartisan Congressional Down Syndrome Caucus. She has taken up a leading cause of the disability community, co-sponsoring a bill called the Achieving a Better Life Experience Act.
It would modify the Internal Revenue Service code to allow parents of children with disabilities to set aside money in tax-free accounts for future education, housing and transportation needs. The accounts would be modeled after current 401(k) retirement and 529 college plans.
"We have hopes and dreams for Cole, and we want him to be all that he can be, and we want to give him the strong foundation so that he can pursue a job and hopefully independent life," McMorris Rodgers said.
Brian Rodgers added, "Like any parent, you want them to reach their highest potential."
Life as mom
"Cole, do you like music? Can you put music on," McMorris Rodgers asks.
Cole reaches for a CD. "Oh, oh," she says, glancing at her husband.
"He has Bruce Srpingsteen. He loves Springsteen. It's just a little loud for the morning."
Cole starts rocking out on the couch, his blond hair shaking to the music, while his sister bounces nearby.
The family made the decision to enroll Cole in a public charter school in Washington.
On normal days the kids wake up early around 6:30 a.m.
"They're a nice alarm clock. They kind of take turns getting up," she says smiling at her two children.
She and Brian both pitch in helping get the children dressed and ready for the day. Brian leaves to take Cole to school, which starts at 8:45 a.m., and the congresswoman has some one-on-one time with her daughter.
When Brian returns, she heads off to her Capitol Hill office. He stays home with the kids.
"I spent 26 years in the Navy. So this is a lot like the Navy," he jokes. "It's dynamic, it's interesting and there's a purpose to it."
The congresswoman shuttles back to her district in Spokane on weekends. Sometimes she takes the kids with her. Her mother lives there and is happy to see the grandchildren.
Finding time to get it all done isn't easy. But the couple try.
"Thursday night is date night. So when I'm in town and don't have votes, we have date night. ... That's our night," McMorris Rodgers said.
Life may get even more topsy-turvy for McMorris Rodgers. Her name comes up repeatedly as a possible vice presidential pick for Romney, the presumptive GOP presidential nominee. The family deals with it by trying to be as flexible as possible.
"The schedule is always changing, fluid. We try to schedule things as much as possible in advance. But there's always things coming up. Fortunately, they've been pretty good travelers. They don't know any differently."
Revving up for another campaign season, McMorris Rodgers says she's ready. "This will be the first campaign season for Grace." And Cole -- expect to see him charming the crowds. "He loves parades. He loves to be in a parade and wave and dance to music. He's a natural."

Friday, June 22, 2012

People with Down Syndrome Can Be Jerks, Too

Growing up with someone with an intellectual disability taught me that they have the right not to be sweet all the time.
My Aunt Sandra has Down Syndrome, and she can sometimes be kind of a jerk.
That’s a legitimate thing to say, I think. There is little that makes me more uncomfortable than when people sanctify those who are intellectually disabled. Sure, the majority of Sandra’s friends with Down Syndrome have been genuinely sweet-tempered, loving individuals. More than once, though, I’ve had conversations where a well-meaning friend will sigh and say, “People with Down’s -- they’re just -- they have the best smiles, you know? They’re always smiling!”
This seems completely ridiculous even to write, and I can’t believe I’m spelling it out. But people with Down Syndrome aren’t puppies. They don’t exist to fill your heart with gladness. They’re people, with feelings and hormones and bitchery, and they can sometimes be giant manipulative jerks.
I lived with Aunt Sandra from when I was four until I moved out for college, so I kind of think of her as my older sister. When I was a kid, we were totally best friends: She’s great with children and has the patience of literally no one else in my family, so we got along fabulously. We’d play hide-and-seek and freeze tag in the backyard or watch endless hours of pro wrestling on TV, which both of us were weirdly into. 
When I got older, of course, things got harder: I became a teenager who Needed Boundaries, Ugh, God, and social butterfly Sandra couldn’t really understand why I would shut myself in my room for hours on end to have intense emotions about Smash Mouth. 
“Kate, do you want a Diet Coke?” she’d offer every ten minutes, opening the door a smidge. 
I’d frantically throw myself in front of my computer monitor. “No, Sandra, GOD! I’m BUSY!”
“Just thought I’d ask,” she’d mutter, shutting the door gently. And then I’d feel guilty for snapping, until she’d come in again and start the cycle over. Every. Ten. Minutes.
She was also the World’s Greatest Cock-block: For someone who’s a little overweight, she moves like a cat. I can’t count the number of times that a friend and I would be making out on the basement couch, only to see Sandra-shaped movement from the corner of my eye. 
Jesus Christ,” I’d yelp, shoving that week’s mouth-friend away from me. “What -- we were just watching 'Freaks and Geeks!'”
“I saw,” she’d reply cryptically, and then tell my grandma all about it. Dammit, Sandra.
She’s what my grandma always called “high-functioning,” in a careful way that suggested she was quoting it from somewhere else. She likes to read books about the history of voodoo and watch Nick at Nite reruns, and once she discovered Google it was all over. Her favorite thing to do the last couple years has been to “travel:” to type in addresses of her loved ones and use the StreetView to look at their neighborhoods. She’s probably seen more of San Francisco than I have.
Apart from her creepy radar of somehow knowing exactly when I was watching porn, Sandra also has an emotional intelligence that far outweighs anyone else in my family. The rest of us are pretty cold-hearted awkward-faces who have to have feelings spelled out for us before we get that other people aren’t robots. 
But Sandra is really great at sensing when people need a hug or when they’re not really paying attention to what she’s saying. This makes her a wonderful person to be around most of the time: She really does have a positive, loving energy that fills the whole room whenever she’s around. And this also makes her a pretty great liar. 
My friends never believe me about this. “You’re being dramatic,” they say. “She’s probably not doing it on purpose!” Anyone who says this has not been harangued by a persistent 50-year-old who will not rest until you drive her to Borders.
“Sandra says you’ll drive her to the bookstore,” my mom would inform me as I re-read "In the Hand of the Goddess." 
“News to me,” I’d say. “I’m busy!"
“Well, you told her you’d do it, so you have to do it!” she’d snap. 
Sandra would come in as my mom left, beaming. “You’re taking me to Borders?!”
Of course I am. I’m not a monster. Dammit, Sandra.
A year ago, Sandra was diagnosed with early-onset Alzheimer’s. I’m no mental health expert at all, so I may have misunderstood all of this, but it’s been manifesting itself a lot like paranoid schizophrenia.
Sandra hears voices all the time now. They tell her that she can’t go on the computer, that she can’t watch TV anymore. She sees people sitting on the closed toilet seat, snarling at her and telling her she can’t come in. No more “traveling.” She’s afraid to go get the mail or take the dog outside or do anything, really, except sit in her room and stare at nothing. 
I was away at school when the voices first started talking to her, and the change in her when I came back was gut-wrenching. Sandra used to ramble at me about the movies she’d seen and what she wanted for her next birthday. Now, nothing. Silence. Or worse, when she did talk to me, she’d barely look at me. She didn’t really know who I was anymore.
Her emotional intelligence hasn’t gone away, though, which makes it almost worse. She can tell that we get upset when she talks about the voices, so she’s gone almost non-verbal as a response. Or she’ll lie about them: hem and haw about something as minor as going to get frozen yogurt.
“I’m not hungry,” she’ll say, scratching nervously at the bone above her wrist. “I don’t want to go.”
If you know Sandra at all, you know this is grade-A bullshit. But she’ll stick to her guns until you ask her outright, “Is someone telling you not to go?”
“The man is,” she’ll mumble. 
“What man?”
“I dunno.” Great.
I can’t imagine feeling like that. She knows something’s wrong, but she doesn’t know exactly what, and it scares her. Sometimes, she reacts violently: She’ll destroy her room, ripping down her WWF posters or smashing the Karen Carpenter records she’s carefully curated over the years. 
Last July, when I was living in San Francisco, my mom called. Sandra had had a particularly bad “episode:” my mom didn’t go into details, but it had been enough to make my normally unflappable mother decide to drive her to the emergency room. My mom didn’t want sedatives for her, she explained to the nurse; she just wanted something to dull the anxiety, just so Sandra wouldn’t be so terrified of what was happening in her skull.
No dice, the nurse told her. Intellectually disabled people had to be seen by a specialized psychologist or not at all. 
“Please,” my mom begged. “I just want her to be able to sleep.”
The nurse consented to give Sandra a psychological evaluation. When they asked whether she heard voices, she said, “No.” When they asked if she did what the voices told her, she said, “No.”
“I can’t prescribe anything until she hurts herself or someone else,” the nurse told my mom. “And she says she’s not hearing voices, anyway.”
“But she’s lying,” my mom said. “She hears them all the time! And she does do what they tell her!”
“Do you really think she’s capable of lying?” the nurse snipped. 
My mom went home in angry tears. Sandra had to wait two weeks before she was able to get any semblance of medicated ease. 
Incidents like this are why I was left sobbing over my keyboard at stories like that of Misty Cargill, an Oklahoma woman who was denied a kidney transplant for her mild intellectual disability. Some doctor, who had never met Misty, determined that she wasn’t worthy of a life-saving kidney that could have gone to someone without a disability. And she died from it.
What if Sandra had lashed out physically the night my mom took her to the ER or any other night afterward? She could have died, too, because that nurse didn’t deem her worthy of even a second glance. 
I’d like to think that if I started hearing voices in my head, people would take me seriously when I or my legal guardian asked for anti-anxiety medications. Because Sandra was born with a lower IQ, though medical professionals decided that her word wasn’t good enough. 
I’ve always wondered how Sandra perceives herself. I never asked her how she felt when my brother Mikes and I grew up and didn’t want to play hide-and-seek anymore. I never asked whether she could even tell she was different, or whether she thought the rest of us were just unobservant, unemoting jerkwads who didn’t walk slowly enough for her to keep up with us.
I’d like to say it was because I was respecting her feelings. I’m also really scared that I’m just as bad as that ER nurse. I know she can lie, but I’ve skipped through life thinking she’s incapable of resentment. So I’m terrified that on some level, I, too, have stripped Sandra of her agency and dignity as a human. 
She may have the sunny smile that’s become the face of Down Syndrome, and she also deserves the choice to be cranky, needy, angry, suspicious, manipulative and scared. Her Alzheimer’s is reminding me of that now. It horrifies me to think I might have forgotten, or never known at all. 

Thursday, June 21, 2012

Family makes bucket list for baby with only weeks left

He’s not even two years old but he is already checking things off his bucket list: from the simple stuff like petting a puppy and riding a bike, to drinking a beer with his dad (root beer of course, in honor of his 21st month birthday) and getting a speeding ticket for going too fast in the hospital.
Ryan Roberts' parents want him to live his life to the fullest; he was born with Down Syndrome and a heart defect and has little time left.
When doctors told them there was nothing else they could do for Ryan’s heart, they stopped his supportive cared and declared him a DNR -- Do Not Resuscitate. Diane Roberts took to her Facebook page to let out her frustrations.
“People kept asking, ‘What can I do for you?’ We didn't want anything,” she tells HLN. “We didn’t want the people to bring stuffed animals and balloons. His room is filled with balloons. “
Her suggestion was a simple one: “I said, just go create a memory with your kids. Just go put a banana split down in front of your kids for dinner and watch their faces light up. No chicken, rice and broccoli tonight, just ice cream. They're going to remember that forever.”
Her friend launched a Facebook event called "Ryan's Banana Split Party," asking people to fulfill Diane's wish. And what started with just a handful of friends quickly exploded to almost 20,000 people, who have pledged to hold their own banana split parties in Ryan’s honor.
“It's so crazy how this all started,” she says. “I said something to one person about having a banana split with your family and about two weeks later there are 18,000 people on the Facebook page.”
Families from around the country have posted messages of support along with pictures of their ice cream parties. You'll see McFlurrys at a McDonald’s in Texas, banana splits on the last day of school in Vermont, Dippin’ Dots in Pennsylvania  -- and on and on. It’s hard to scroll through and not get a little teary-eyed at the overwhelming support from all of these people who have been touched by Ryan’s story.
If you've been inspired and want to send your support to Ryan's family, it’s easy to do. Find Ryan’s Banana Split Party on Facebook and upload your words of encouragement and pictures right there on the wall.

By Gordon Loesch/NBC News:
A Pittsburgh, Pennsylvania family faced with a difficult decision is hoping people across the world will be inspired by their 21-month-old son.
Ryan Roberts was born with Down syndrome and a congenital heart defect.
Doctors recently gave Ryan only weeks to live, but Ryan's parents said they're making the most of every minute.
Inside Children's Hospital of Pittsburgh, where Ryan has spent most of his life, his parents are making sure the little boy gets to experience some simple joys like petting a puppy, finger painting, having a beach party and riding a bike.
Ryan's bucket list gained international attention on Facebook after a friend of the family created a page for "Ryan's Banana Split Party."
Diane and Erik Roberts said they have received photos of people having a banana split in honor of Ryan from across the country and around the world.
Almost 5,000 people agreed to attend the party.
"I wanted people to just not take tomorrow for granted and go home and create a memory with your children where you just have a banana split for dinner," said Diane Roberts.
The outpouring support from family, friends and perfect strangers has helped the Roberts through a difficult time.
Diane and Erik Roberts said they recently made the heart-wrenching decision to sign a do not resuscitate order.

"We just call him Superman because everything he's been through. It just shows a pretty incredible amount of strength," Diane Roberts said. "Nobody is giving up on him. Nobody gives up on him. But they just know when he's suffering. It's just not fair."
The blood flow to Ryan's heart is too much, leading doctors to believe that the little boy only has weeks to live.
Ryan was only given a 10 percent chance of being born alive, and his parents said he wasn't expected to survive his last surgery.

A father's quest to make daughter's dreams of fame come true

Emily Foster sings. She plays softball. She hangs out with her sisters, she doesn't get scared on the big rides at the fair, and she likes science class best of all. And like most other 10-year-olds, she has a dream.
Hers is to be famous.
She also has Down syndrome.
When she told her father, Russ Foster, that one day thousands of people would scream her name, he decided to help her reach her goal — or, he figured, as close as they could get. The Melbourne, Fla., dad started a Facebook page for what he calls the Emily Foster "famous" project. He's already got more than 1,000 friends and acquaintances to "like" it.
Russ isn't really expecting fame in the form of thousands of people screaming Emily's name. Instead, he's measuring success based on the number of new people and experiences he can introduce Emily to, and, to a lesser degree, the number of famous people she can meet.
"It's just a dad trying to make his daughter's dream come true," said Russ, who has three other daughters. "I want her to be seen like any other kid, and I guess me creating the project is a way to level that field."
Emily's mother, Amber, initially was wary. She feared people might be mean to Emily.
"It would hurt my heart," Amber said. Thankfully, she said, that hasn't happened.
To be a singer
When Russ first envisioned the Emily Foster "famous" project back in January, Emily noted several activities or achievements for which she could succeed — ballet, medicine, fashion design, zoo keeping, firefighting, and shark hunting, to name a few. But most often she said that she'd like to be a famous singer.
Emily likes to play CDs on a boom box in the bedroom she shares with her 5-year-old sister, Averi. Her favorite artist is Taylor Swift; her favorite song is Swift's "Never Grow Up." Emily strums on a small pink guitar and sings along, working to overcome her speech impediment.
Russ said that chances are slim that Emily will become a famous singer.
"Unless there's some miracle, people aren't going to buy tickets to her concert," Russ said. "My dream would be for her to introduce Taylor Swift at a concert."
Russ managed to make contact with Swift's agent. He said they may be able to arrange something the next time Swift is in the area.
Russ persuaded figures such as actor John Travolta, U.S. Senator Bill Nelson and Dick LeBeau, a Hall of Fame defensive back and football coach, to send Emily autographed photos. She got a part in a local music video. She met the Harlem Globetrotters.
"I didn't realize until later that it was kind of a unique endeavor," Russ said of the project.
"Any time a child, whether or not they have Down syndrome, when they express a dream, parents should be encouraging of that," said Amy Van Bergen, executive director for the Down Syndrome Association of Central Florida.
"There are people with Down syndrome who are famous, who are well-known," Van Bergen adding, citing Lauren Potter, an actress with Down syndrome best known for her role as Becky Jackson on the popular show "Glee."
Of course, the chances of any child becoming famous are slim.
"I don't think (Emily's) chances are any less than a typical child who doesn't have Down syndrome," Van Bergen said.
Emily and her twin, Megan, were born at 33 weeks, rather than the usual 40.
Russ and Amber said they had never thought much about Down syndrome before they had Emily. After, they worried about the possible health impacts.
"I remember sitting and bartering with God," Amber said. "I'm going to care for this child like my other ones. Don't take her away from me."
That's what Russ and Amber say they have tried to do, raise Emily the same as their three other daughters: Megan (Emily's twin), Averi, 5, and Miranda, 16.
Russ said it was helpful that Emily had a twin without a disability; it gave them a benchmark to measure Emily's development. Both girls had attended Manatee Elementary School, but the family decided to withdraw them when they felt that Emily was being unfairly separated from the general education setting.
Emily has responsibilities at home and she is punished if she misbehaves, just like her sisters.
"We treat her like the other kids in the household," Russ said. "She doesn't get any special treatment."
"It's amazing what she does with the barriers others place in front of her."

Wednesday, June 20, 2012

Good Life

You know the song Good Life by One Republic…

  It is so applicable to my life.  Every time I hear it, I melt.  I truly have a Good Life!

Woke up in London yesterday
Found myself in the city near Piccadilly
Don't really know how I got here
I got some pictures on my phone

With this verse I instantly think of Welcome to Holland by Emily Perl Kingsley

New names and numbers that I don't know

So true!  Majority of the names and numbers stored in my contacts are relatively new.  Granted I know them now.  Less than a year ago, I knew none of them.

Address to places like Abbey Road
Day turns to night, night turns to whatever we want
We're young enough to say
Oh, this has gotta be the good life
This has gotta be the good life
This could really be a good life, good life

Gotta be the Good Life?  Nope. This IS the Good Life!

I say, "Oh, got this feeling that you can't fight"
Like this city is on fire tonight
This could really be a good life, a good, good life
To my friends in New York, I say hello
My friends in L.A. they don't know
Where I've been for the past few years or so
Paris to China to Colorado

To some of my friends I do say hello.  To the others, they are the ones in L.A.; they don’t know my new life.

Sometimes there's airplanes I can' t jump out

There was a point in the past 16mos that I could completely visualize myself on the edge of the airplane door, ready to jump out.
Sometimes there's bullshit that don't work now

There is stuff that doesn’t work now {relationships, techniques, systems, etc} and bullshit is exactly what it is.  

We are God of stories, but please tell me
What there is to complain about?
When you're happy like a fool, let it take you over
When everything is out you gotta take it in

What is there to complain about?  Nothing, I have a good life.  I occasionally need this song to shift my thought process, make me happy, and allow it to take over!

I feel like there might be something that I'll miss

I do deal with a constant feeling that there is something that I’ll miss ~in regards to Natalie~ whether it’s a service, conference, seminar or class that I need to sign up for or enroll her in.  It’s a constant.  It will never go away. As she progresses and reaches milestones, as her parent, that means there's another step to be taken.

I feel like the window closes oh so quick

This symbolizes my constant awareness that I need to be one step ahead.   If she misses something, if that window of closes to quickly; it’s my fault for not being there sooner to scoop up that opportunity. I am the only one to blame.

I'm taking a mental picture of you now

My mental picture of Natalie is a side profile of her face.  I pray that it will be etched in my memory, forever.

'Cause hopelessly
The hope is we have so much to feel good about

I truly know that I have so much to feel good about!!

Oh, this has gotta be the good life
This has gotta be the good life
This could really be a good life, good life
I say, "Oh, got this feeling that you can't fight"
Like this city is on fire tonight
This could really be a good life, a good, good life
Oh yeah, good, good life, good life, oh, this is

This IS the Good Life!