Tuesday, November 25, 2008
This is the only 3 year old in the world that doesn't love cookies. I thought maybe if we made and decorated our own, he might be more motivated to try one. He loved decorating them, he loved feeding them to mommy but not one morsel went in his mouth. Crayons, PlayDoh, pine cones - yes. Cookies - no.
Friday, November 21, 2008
I recently read that today's children with Down syndrome will be the first generation to outlive their parents. It's wonderful that medical advancements have allowed them a longer and more enjoyable life. At the same time, it creates a new set of problems for parents who now need to plan for their child's future after the parents have passed away. It is one of those embers that always seems to burn somewhere in my brain...what will happen to Caden when I am gone? Hopefully I will have raised him to be self-sufficient and as independent as possible. But what if he needs some assistance? In most states, almost as soon as the child leaves high school and transitions into adult services, they will be added to the ever-growing list of people with disabilities who are in need. And they will wait for those services. Sometimes the family members can pick up the slack and offer housing and such until the state funds become available but many others are in extremely urgent situations. And still they wait. In Pennsylvania, that waiting list is over 20,000 people long. It terrifies me, that Waiting List. I don't ever want Caden to be on it but there just isn't enough money to go around. If he needs services from the Mental Retardation program, he will most certainly become a number on the list.
So I was pleased to read this from Peter Bern, the Executive Director of the ARC:
"Visibly moved by comments from self-advocates, family members and
chapter leaders at the Opening Plenary Session of The Arc's 2008
National Convention, renowned television journalist, Geraldo Rivera,
electrified the audience, pledging that on January 6, 2009 - the anniversary
of his expose about Willowbrook - he will present a one-hour news
special to shine light on the current crisis facing people with disabilities and their families - the Waiting List.
This news expose will only be possible if chapters of The Arc, self-advocates and family members come forward IMMEDIATELY with VIDEO and STORIES
that dramatically illustrate the challenge people with intellectual disabilities face today in accessing the service they need to live freely in the community.
The Arc of the United States will be working with Geraldo and his staff to gather the
background information, stories, video and other media to make this show a
success..... but time is very short.
Have good video to share? Send it in today.
Have a compelling story to tell? Then get to work today.
Write it down or, better yet, take out your video camera and film away!
Geraldo needs stories about the crisis people with disabilities and their families are facing at all stages of the life span.
Send your video or stories to firstname.lastname@example.org.
For assistance contact Laura Hart, Director of Communications at email@example.com
or Stacy Monoghan, Online Advocacy Manager, at firstname.lastname@example.org
Let's make this the beginning of the end of the Waiting List."
In 1972, Geraldo jumpstarted his career, winning an Emmy in the process, with a story about the neglect and abuse of patients with mental disabilities at New York's Willowbrook Hospital. This report led to a class action lawsuit against the state institution. It was settled 3 years later but by then, NY had decided it was time to start moving its patients into community programs. The publicity generated by the case encouraged the passage of a new federal law called the Civil Rights of Institutionalized Persons Act of 1980. This law allows the Attorney General to seek
relief for patients confined in public institutions where conditions exist that deprive them of their constitutional rights. In 1983, NY announced it was closing Willowbrook.
I can't wait for Geraldo to take on the Waiting List! Tune in on January 6.
Wednesday, November 19, 2008
I bought a rug for Caden's bedroom and he was so excited about it that he wouldn't let me carry it through the store. He had to hold it across his stroller. Even through checkout he held it, making the cashier come around to scan it. A couple of guys offered to carry it to our car but Caden wasn't having that. Unfortunately he is so in love with his new flooring that a couple times a night we usually have to put him back in bed because he is sleeping on his beloved rug on the floor.
Monday, November 17, 2008
Continuing the previous post's theme about Christmas gifts, here is another great one: The Child King. This is a movie that was released straight to DVD last year and its website describes the film as "the inspirational story of a determined young man with Down syndrome who takes his little brother on a life-changing quest to find Santa Claus at the North Pole." It's truly a gem of a family film and the actor with DS that plays the older brother steals the show. Watch a trailer and buy the DVD here. Added bonus: 100% of the producer's profits go to the Child King Foundation which provides funds and grants to those groups and individuals that assist people with intellectual disabilities.
I love the background story as to how the movie came to be made. Again from The Child King website:
"It is a bittersweet irony that The Child King, an inspirational tale of love and redemption, was born in the midst of a famously tragic event in American history.
In 1993, Jeff Kerr was a federal agent with the Bureau of Alcohol, Tobacco and Firearms (ATF) assigned to the siege of David Koresh's Branch Davidian compound in Waco, Texas- a siege that would end in a horrific loss of life. On the day of his departure for Waco, Jeff had a chance encounter at the Federal Building in Boston, Massachusetts with a fellow agent who had brought along his three year-old son for a visit. The boy was captivating, energetic, full of affection… he also had Down syndrome.
In the following weeks during the long siege at Waco, Jeff found free time to begin developing an idea about two brothers traveling to the North Pole to find Santa Claus. Recalls Jeff, "The Child King was written during off-duty time and while sitting in one of the Jeeps surrounding the Branch Davidian compound. Our Jeep was stationed way out in the dark countryside, the middle of nowhere, with nothing but cows and bulls for company. There were two agents assigned per Jeep and we alternated taking hour-long breaks. During my off-time I would scribble The Child King under a flashlight."The story he scribbled needed a hero. Inspired by his earlier meeting with a certain precocious young man in Boston, Jeff made his hero a teenager with Down syndrome.
Twelve years later he would team with brother Frank, a longtime filmmaker, to finally realize the feature motion picture, The Child King." His brother became the director and co-producer.
I was tickled to receive a phone call from the writer Jeff Kerr after I had placed my order, wanting to confirm my address. Apparently he's handling the merchandising himself.
If you find yourself stuck for a Christmas gift idea, you can't go wrong with this movie!
Friday, November 14, 2008
Speaking of adoptions in my previous post leads me to a wonderful organization called Reece's Rainbow. This organization was formed by a mother of a 6 year old boy with Down syndrome to help families adopt children with DS from around the world. In many countries the children are sent to "orphanages" until around the age of 4 when they are transferred to a mental institution. At that point they receive no education, little medical care and will never leave if they manage to live. It is a constant race against time to get these children adopted before being sent to the institutions. On their website you can see children available for adoption now that are most at risk due to their age. You will also see how much money is in their grant fund. Reece's Rainbow accepts donations that become attached to a particular child and goes directly into their fund. This money is an adoption grant to ease the financial burden for the adoptive families as the average cost of an international adoption is $25,000. In 2 years, this wonderful group has helped 120 children find homes.
Have a person on your Christmas list that is hard to buy for? Give the gift of a family and make a donation to Reece's Rainbow in that person's name. They are currently running their Christmas Angel Tree fundraiser until Dec. 15 which allows you to sponsor children who remain unmatched. For a donation of $35 or more, donors will receive a beautiful porcelain ornament with your sponsored child's photo on the back to hang on your Christmas tree. They will send the ornament, along with a beautiful gift card, announcing your gift to the intended recipient while 100% of your tax-deductible donation goes towards the adoption of your sponsored child. Please consider a donation and help a child with Down syndrome find a home and know love. Imagine how different that child's Christmas could be next year...
Wednesday, November 12, 2008
Waiting list for adoption....I couldn't get past these words. I don't remember a lot of useful information coming from my meeting with a genetic counselor during the process of deciding whether or not to continue my pregnancy. Mostly she shared statistics and medical information that I already knew. But I must give her credit for making this one statement that had a very powerful impact on me. She simply advised, "There is a 100-person waiting list to adopt babies born with Down syndrome." I couldn't absorb this news. One hundred seemed like an awfully large number. I didn't know any person who would want a baby like mine but here were one hundred, ready and willing.
During the following week as the Tank and I continued to wrestle our souls over The Decision, I kept coming back to the adoption waiting list. How could I abort this baby when he was wanted by over one hundred families who would take him regardless of whatever health issues he was facing? What did they possess in their beings that I didn't? I knew I would feel like a failure as a mother if I continued the pregnancy but then put him up for adoption. That 100-person army of love challenged me to find strength in my heart and to become a better person for my son. The waiting list haunted me. Eventually I determined that if these mysterious list-people could do it, I could too.
I'm fortunate my genetic counselor shared this information with me. Studies show that many if not most of the 90% of women who eventually terminate after a prenatal diagnosis were not given this knowledge. Maybe the outcome would still have been the same for them whether or not they were aware of the adoption option. But... maybe not.
A recent Washington Post article states that the list to adopt a child with Down syndrome has now grown to over 200 families. Missouri Senator John Loudon was one of these families and has since adopted a son with Trisomy 21 named Sammy. Loudon was so moved by his experience with Sammy's adoption that while the federal government was working on passing the Kennedy-Brownback bill, he pushed through his own legislation in his state last year called Sammy's Law. The law requires medical professionals to provide accurate up-to-date information on the outcomes of people with Down syndrome to mothers with a prenatal diagnosis as well as to share adoption resources with them.
During the recent presidential campaigns, we heard candidates agree that the ultimate goal for both sides of the pro-life/pro-choice debate should be to reduce the number of abortions. These new laws sounds like a step in the right direction to me. I hope that as more pregnant women facing the same grueling decision that I did learn of the adoption waiting list that they too will find peace and ultimately strength in its numbers.
Tuesday, November 11, 2008
Thursday, November 6, 2008
Speaking of my trip to Nepal in my previous post made me recall the tragic news last month that a small plane of tourists had crashed at the Lukla Airport in eastern Nepal, killing all aboard. Having flown in and out of that airport if it can truly be labeled such, I thought I'd share my adventure there. It is a "there but for the grace of God" experience as flying in this region is amazingly dangerous and requires extremely talented pilots.
Lukla is known as the gateway to the Himalayas. Most people going to Mt. Everest fly here from Kathmandu and then begin trekking. It is situated at about 9400 feet and there are no roads in the area, just mountain trails. Flights are very often delayed because of weather. It is windy, in and out of cloud cover, often rainy. I was stuck at the Kathmandu airport for 2 days waiting for good weather which consisted of flying in a cloud. Didn't seem like optimal conditions to me. Every now and then the white fluff would clear and I'd catch sight of the mountain peaks around us which seemed to be eye level -yikes!
My pilot tried to assure me of his skill saying that he'd never had to pull out of a landing before which was fortunate because there is no way to pull out. In other words, he hadn't wrecked yet. I recalled that information as we circled and circled before landing. He said the weather has to be perfect to drop down on the airport. It was a rough fast landing on dry dirt which has since been paved, surely giving the illusion of added safety. Just when I thought we were destined to crash into the mountainside, the pilot made a sharp right turn onto the helipad and quickly came to a stop. Everyone on my tiny plane (five passengers and 2 pilots, we were nearly on each other's laps) broke into applause afterwards. It is that nerve-wracking. It is often called the scariest airport in the world and I can vouch for that.
I taped my departure but it is on videotape and I have yet to convert it to DVD so I can't share it. Here is a video I found on youtube that gives you an idea of what it looks like outside the plane. Inside the plane is another sensation altogether. Do you ever wonder how you would react under stress? Would you remember to stop, drop and roll? Would you remember self-defense training? Would you blank out and stand immobilized? If I could share the video, you would see that under stress I laugh maniacally. Nice to know I can be counted on in an emergency for some giggles. As it happened, we had a clean takeoff and return trip to Kathmandu and I have a crazy airport story to share.
Monday, November 3, 2008
My son was covered in blue ink when I picked him up from school today. He looked like he'd just auditioned for the Blue Man Group. His teacher expressed regrets that they didn't realize they were doing stamp art with permanent ink until Caden was coated in the stuff. Great, thanks. As I drive home, Caden waves at passing cars as always. I shrink in my seat assuming that the other drivers are labeling me a bad mom because of my child's cerulean condition. As soon as we get in the door of the house, I strip him down and start scrubbing. Nothing works. He is still blue and now a little raw. I groan at the thought of taking him to the hospital tomorrow for his rehab swallow study looking like Papa Smurf.
Because tomorrow is election day, my mind travels back to my trip to Nepal a few years back which coincided with their national election. I spent a month there with 3 weeks trekking the Himalayas, eventually climbing Kala Patar over Mount Everest's base camp. I traveled to and from Kathmandu alone but was met at the airport by a Sherpa I'd hired over the internet (ah, the naivete of youth). On my first day in the country, I wanted to kick the massive jet lag by staying up all day. Sherpa Raj wanted to get the permits and supplies ready for our mountain trip but first I needed lunch. He sat beside me sipping tea while I sampled my first dish of dal bhat (rice and lentils, soon to become my staple meal). Then I spotted his thumb.
"What happened?" I asked, hoping I wasn't being rude in doing so but I was genuinely concerned. It was black, like he'd taken a hammer to it.
"I voted," Raj replied nonchalantly.
"Uh, okay," I was confused but he offered nothing more. I hoped his meaning was lost in the translation and that the voting process didn't involve a hammer to the thumb. "Did you get your hand stuck in the voting machine or something?"
"No, we put our thumbs in ink before we vote." I was still confused but he explained that they use the thumbprint to prove that each person only votes once and is the actual person they claim to be. Once you get through that identification process, you go on to mark your ballot. The permanent ink remains for a few days afterwards, hence the state of his thumb. I started to like the idea. You could also see who had not yet voted and encourage them to do so. He said it makes the voting procedure a long one but to people not accustomed to democracy, it was worth their time. The blackened thumb was a source of pride.
Back in the States, it is too easy for me to fall back into routine and take things for granted. I learned so much during that month in Nepal about what is important in life to me and what I really need to be happy. At the time, Nepal was the fifth poorest country in the world and I understood how very fortunate I was to be born in the United States of America, particularly as a woman. I know too how extremely lucky Caden is to have been born in this country. For all its problems, it is still one of the only places in the world that will recognize him as a human being deserving of education, medical care and a life of his own. The majority of the world does not grow up in an environment where "all men are created equal; that they are endowed by their Creator with certain unalienable rights; that among these are life, liberty, and the pursuit of happiness..." I look at my inked-up son and remember Raj's thumb on this day before we cast our votes. I will be proud and honored to vote tomorrow and will not take the matter lightly. Caden always has a way of getting his point across. I just wish it wasn't in such a bright blue!