... the toddler has power. I should have known something was up when he got super quiet but I thought he was watching his new Nemo movie. Unfortunately the call of unwrapped presents under the Christmas tree was too much for Caden to resist. Tissue paper stuck in the door is never a good sign:
Guilty! Trying to hide behind your table won't help!
Tuesday, December 30, 2008
... the toddler has power. I should have known something was up when he got super quiet but I thought he was watching his new Nemo movie. Unfortunately the call of unwrapped presents under the Christmas tree was too much for Caden to resist. Tissue paper stuck in the door is never a good sign:
Monday, December 22, 2008
Caden has really fallen in love with Santa this year. He has no idea that you're supposed to tell Santa what you want for Christmas and then he leaves tons of presents for you under the Christmas tree. He loves Santa because he's a nice cuddly warm guy in an easily recognizable fuzzy red suit. Like Elmo.
Our local fire department drove Santa through town on top of one of their fire trucks. Seemed like a great idea except that they kept blaring the horns and sirens of the trucks and turned Santa's arrival into a somewhat terrifying moment for younger children. You'll see Caden clinging to his mother with all his might in this video and then hear him excitedly chanting "DADADADADADA" as in San-DA when he realizes who's on top of the last truck.
After we retreated indoors, Caden kept bringing his coat to us as if he wanted a do-over. He was knocking on the front door and even brought my coat to me. He wanted to go back out and find Santa Claus despite the accompanying fright fest of noise.
Caden's gymnastics class held a holiday party. It was basically an open gym session for the kids to run around and play. At one point they were asked to sit together for some caroling. Suddenly Santa appeared. Caden jumped up and did a little jig, spun in circles, cupped his face, shouted "DADADADADA". He could not contain his pure joy and it made everyone around us smile and laugh. Every time he sees Saint Nick is as exciting as the first time.
Now we have to work on when he sits on Santa's lap, Caden should do more than melt. He looks like he's settling in for a nap and completely collapses on the man. It is difficult to take pictures when your son's neck looks broken as it rests on that soft red suit. Santa usually asks Caden several times what he wants for Christmas and it always ends the same: he wants a hug. I think Caden understands the spirit of the season just fine.
Friday, December 19, 2008
As a followup to my previous post about Geraldo's upcoming investigation into the dire Waiting List situation for individuals with disabilities, I have an update on when the segment is to be aired. There is now a change of date. It has been moved up to Saturday, December 27 on 10 pm on the Geraldo at Large FOX News show. This is great timing to catch people in the "holiday spirit" which may open their eyes and hearts to this big segment of the American population living in desperate circumstances. There is also hope that local Fox affiliates may jump on the bandwagon and do their own local reporting on the Waiting List. Tune in next Saturday!
Wednesday, December 17, 2008
I saw it coming. SMACK! And down went Caden like a fallen tree. Let the tears begin.
We had been invited to a friend's house for dinner. They were hosting some out-of-state guests with children and thought Caden would like to play with the kids. Which he did. He followed them around from room to room with me right in tow. My friend told me to relax as the kids would be fine and there was nothing they could break in the house. I gave Caden some space and tried to unwind enough to socialize with the adults. One of the guests was an overly-animated New Yorker who talked with all of her body, hands moving continuously. As a child that relies on a lot of sign language, Caden was confused by her movements. She had a sudden booming laugh that scared him and brightly-striped pants that made your eyes water if you stared at them for too long. For all her vivaciousness, Caden seemed to be happy to be in another room away from her.
I saw the kids tear out of a bedroom chasing each other down the hall, Caden bringing up the rear. When I heard the playful screaming I realized that they had reached the end of the hall and were turning around to chase each other back. Caden was still plowing full steam ahead just as the other kids turned and SMACK! One of the older girls leveled my boy flat onto his back. He was scared more than anything but wailing his lungs out for good measure nonetheless. I scooped him up and tried to calm him down when the mother of the girl approached to see that Caden was okay. It was the stripey-pants lady, hands gesturing wildly as she dramatically apologizes. As sweet as she is, I expect that she may end up making things worse.
Caden looks up with his puffy red face soaked with still-streaming tears and takes a solid head-to-toe look at her. I wonder if he might start screaming anew when he raises his thumb to his nose. He begins to then wiggle his hand, pinky outstretched. Stripey-pants lady realizes he is making a sign.
"What did he sign?" she asks me.
"He said..." I consider lying, not sure how this stranger will react with everyone gathered around us listening. Maybe I could say he signed thank you, or pretty. I opt to translate honestly instead. "He said you're silly" I reply while choking down a giggle.
"He said I'm silly?" She seems surprised by his opinion of her and straightens up. He has stopped her in her tracks. Then she surprises me by kneeling down to his eye-level and gently smiling. In a near whisper she says "Yes I am silly!" Through his tears, Caden smiles and I know the drama is over. She hugs him and seems to rejoice in her new label while Caden returns to playing with the other kids. All is right with the world again.
Thursday, December 11, 2008
Two days ago I gave a presentation at our local hospital. Doesn't sound so embarrassing. First some background so you can appreciate the mortification I am about to share.
I have been helping this hospital for the last couple of years with their Family-Centered Care Training. The organizers of the training feel that they can speak to their coworkers all day about what family-centered care means and how it should be done but the biggest impact comes from having actual patients come in and speak from personal experience. At first the training was part of the new employee orientation but this year they wanted ALL employees included. They offer the program one or two times a month but of course everyone waited until the last date of the year to attend one of these required presentations. They were expecting around 200 people. In previous trainings, they've had about 40 attendees. Three cheers for procrastination.
I frequently am asked to give the patient portion of the presentation because I can speak for myself during my prenatal experiences as well as for Caden as a pediatric patient. More bang for the buck, I suppose. However it was becoming more difficult for me to attend due to Caden's busy schedule. They've also had other presenters not show up due to weather or illness so last year they videotaped one of my presentations to have as a back-up. They've shown it close to 20 times since but thought that because this upcoming group was to be so large, it would be nice to have me in person.
The group is in fact so large that we are moved from the usual lecture room in the medical college to an auditorium at a conference center. The organizers agree to meet me at the door since I don't know my way around this building. As I approach, one of them says "And there you are in your outfit. That's the exact same outfit you wore in the video presentation we've been showing. Right down to the necklace!" Uuuuhhhhhh.... what do you say to that? Is that whooshing the sound of air being sucked from my body? I consider wearing my winter coat during my entire talk.
It's true that the only clothes I've purchased since having Caden have been from Sam's Club while picking up diapers and wipes or the consignment shop when dropping off some clothes he's outgrown. In fact, Caden has a more fashionable wardrobe than his mother. Being a stay-at-home mom, I pretty much live in sweats and jeans. I have 2 nice "adult" outfits for these presentations that aren't 100% outdated. Though the boots that I wore with this particular ensemble I've had since high school. I've had them so long that they're back in style. Yikes! I think it's time to face the ugly truth that I need to do a complete wardrobe overhaul. Or else they'll really start to wonder about me if I show up in this outfit yet again.
Monday, December 8, 2008
"What is Down syndrome, really? Is it like a learning disability?"
Talk about your loaded question. This is the one placed before me at a local holiday train display. The volunteer running the model trains was a 71-year-old man with a great-grandson also named Caden. He approached me about my Caden, asking how old he was and commenting on his size. I respond that Caden is big for a typical boy his age, much less one with Down syndrome. Children with DS are usually smaller than their peers and even have their own growth chart to reflect that. But at this rate, Caden will grow to be taller than me or The Tank. Because I've mentioned DS, I know I have opened the door for related questions from this stranger. Sometimes I feel like a person wants to ask about it but doesn't know how so this is my way to say it's okay. Indeed the volunteer does accept my unspoken offer but comes at me with a question I've never been asked before: is Down syndrome like a learning disability?
"Well, it's caused by an extra chromosome..." I start but he is nodding his head in a way that says "yada yada yada, I know all that".
"It's a random occurrence..." I continue as his head continues to nod.
"Being a syndrome, there is a wide range in the way it is expressed in an individual..." Still the head-nod. In his mind, he is probably fast-forwarding me.
"But in nearly all cases there are the characteristic facial features and some degree of mental retardation." Finally he smiles as I approach some meatiness.
"Anymore with the amount of therapies and stimulation, Early Intervention, better schooling and medical care, the MR is generally mild to moderate. Caden is very bright. He knows all his letters, colors, and shapes. I stopped counting his signing vocabulary when he hit 200 words. He can read over 40 words and is starting to learn numbers. He will learn to read and write and do math. He CAN learn, he just learns at a slower pace or sometimes in a different way." As I hear my own answer, I realize I have talked his question to death. I could have answered it much simply so I backtrack.
"Yes," I finally declare, "I guess it is like a learning disability."
The more I've thought about that conversation, the more I like that way of thinking. Mental retardation sounds scary, clinical and something with which most people may not have experience. But a learning disability...well, heck even Tom Cruise has a learning disability. That makes it more approachable and familiar, different but okay. It doesn't sound like such a big deal to say that his extra chromosome has given Caden beautiful almond eyes and a learning disability. Over simplistic, yes, but still I like this great-grandfather's perception.
Thursday, December 4, 2008
Monday, December 1, 2008
We have entered the phase of "question all authority". I used to be able to tell Caden "No, don't do that" and he would stop whatever he was doing. Simple. Now he looks for alternative methods to accomplish his mischief. For instance, last week we visited our local pharmacy. They had an enormous Christmas tree fully decked out in their lobby area. Caden's hand went straight for the closest ornament. "No, Caden, no touching" I warned and watched my angel's hand go down as he respectfully obeyed his mother. I put my arm around him to enjoy this peaceful quiet moment taking in all the lights and decorations when suddenly Caden's foot shot out and kicked the tree. Who does that? Who kicks a Christmas tree? I did NOT just see that! And to top it off, the little stinker laughed because he knew I had only said not to touch the tree. I never said anything about kicking the tree.
We recently rearranged our living room so that our cockatiel is further from the cold of the front door. She's now in a corner that is too accessible to Caden. He never paid much attention to the bird before but in her new location, she has become fascinating. He runs toys up and down the bars of the cage, tries to push toys into it, hits it, throws balls at it and of course, kicks the cage. My guidelines about the bird grow each day: no hitting, no kicking, no throwing, no toys, no food, no pushing your stool over for a closer look, no dragging the table it rests on.... My poor bird has suffered through my college days, 2 cats and moves across 4 states but I don't know if she'll survive a toddler. Yesterday Caden invented a new form of civil disobedience with the bird: screaming. He stands within an inch of the bars and screams at our poor freaked out feathered pet at the top of his lungs. I have been defeated by a three year old. Again.
I'm proud of his inventiveness. I'm proud of his independent streak. I'm proud of his persistence. And I am utterly exhausted trying to stay one step ahead of this smart little boy.
Wednesday, November 26, 2008
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!
Friday, October 31, 2008
ROAR! Though very cute, this costume didn't make the final cut (actually it's a little too small and thus too tight on him). He did enjoy roaring and attacking the Tank during the brief time he wore it.
Wednesday, October 29, 2008
Yesterday I was very under the weather. By afternoon, I was collapsed on the sofa watching Caden play. After several attempts to arouse me by screaming joyfully in my face, Caden decided to simply make the most of an immobile mommy. He started piling up his wooden blocks in an outline around my head. Comforting to know that should an emergency arise, EMT's would certainly find me surrounded by blocks.
Monday, October 27, 2008
There is a physics theory stating that there are multiple versions of yourself existing simultaneously in different layers in different times. It makes me ponder what the Current Me would tell the Pregnant Me of the Past about life with Caden if our layers overlapped. It was difficult to be excited about my pregnancy when there seemed to be constant doom and gloom from the medical professionals. Knowing what I know now, what advice would I offer to that sad scared version of myself? I wish the Pregnant Me of the Past could have taken a tiny peek into the Current Me's kitchen last weekend.
When the Tank is available on weekends to keep Caden occupied and out of harm's way, I like to get a good bit of cooking done. I enjoy cooking with music playing so I have a flip-down flatscreen tv installed under one of the wall cabinets. I turn on a digital music station and get to work (we don't subscribe to this service and it is the only tv in the house that mysteriously gets the music channels so I'm not complaining). Caden is enthralled by this magic tv that appears out of nowhere. Plus he loves music of any kind so it doesn't take long before he's in my way in the kitchen. I try not to be annoyed and remind The Tank that he will go hungry if he doesn't keep his son entertained. But it is a political season and within minutes, The Tank has become distracted by the googling possibilities of various candidates and plants himself in front of the computer. Caden runs back into the kitchen.
I turn to Caden impatiently and ask him to please go play in another room until mommy is finished. Instead he gives me a big cheeky smile, signs "please", and grabs both my hands in his. He is asking me to dance.
It is a beautiful fall day with sunlight streaming through the single kitchen window. I have a beautiful son that wants nothing more at this moment than to dance with his mother. Always he reminds me to live in the moment. Who could resist?
I turn up the volume and we dance away for half an hour. Sometimes we take solo's, sometimes I hold him in my arms, but mostly we dance holding hands. We both invent a few new moves and showcase our best for The Tank. We all laugh and smile till our cheeks hurt. Who cares about cooking? Life is beautiful.
The Tank had commented that I should hope no one spotted us through the window or they might think we'd lost our minds. I thought, "And why should I care if someone witnessed this fantastically happy moment?" That was when it occurred to me that there is one face I would love to see spying in on us: the Pregnant Me of the Past. I remember how much she wanted to believe that these days would exist. I would wave to her and know after witnessing that scene, she would only need four words of advice: Stop worrying. Start dancing.
Friday, October 24, 2008
It's a pretty surreal feeling to find a video of your child on Youtube that you did not put there! And it's already been viewed 981 times. Some stranger was so touched by the encounter between Palin and Caden that he made this Youtube video. It starts with her signing Caden's sweatshirt saying she loves it, it's beautiful. She looks for us, then beelines for Caden. It even catches his sweet sweet hug and Palin saying "I love him!" when she hands him back. Politics aside, this is truly touching.
Thursday, October 23, 2008
Wednesday, October 22, 2008
Wednesday, October 15, 2008
Crud, the doorbell was ringing while I was giving Caden a bath. Who was calling on us this late in the evening? I suspected yet another visit from Obama supporters. That's the fun part of living in a swing state.
I called to the Tank to answer the door. He was in the basement trying to fix the wheel of my jogging stroller. The ball bearings had fallen out (no, I don't take him offroading!) and though the stroller is only 3 years old, the manufacturer no longer supplies parts since they have discontinued that model. Of course.
By the time the Tank opened the door, I was certain the visitors would be gone. From the bathroom, I could hear him call out "Thank you!" before closing the door. We must have left the lights on in the car and some passerby was kind enough to alert us, I thought.
Then the Tank handed me a small bag of Halloween candy and toys he'd found on the porch. There was a note inside explaining that it was a secret buddy game. Someone had "boo'd" Caden and now it was his turn to pass it on and "boo" 2 other kids. There was even a ghost image to put up in the front window so other people would know we'd already been hit. The Tank said Caden's boo buddies were hiding in the bushes, hoping to see him pick up the surprise but when the Tank opened the door instead they took off running around the side of the house. He couldn't tell which probable neighbor it was but tried to call out thanks after them.
I remember this game being played last Halloween. I thought all the ghosts in the windows were part of some school project because every house with a child had one. Eventually we were boo'd, the day before Halloween. It was too late for me to put together a goodie bag to pass on even if I could find a house that hadn't already been boo'd. I was grateful Caden had been included but saddened that he must have been the last kid in town to put a ghost up.
Not this year. I had seen NO ghosts so far. In fact, I had forgotten about the game. I hung Caden's ghost in our bay window with a lump in my throat. I'm embarrassed to admit that I actually drove around the neighborhood to confirm my suspicions that this year, Caden was one of the first to be boo'd. Yep, less than a half dozen ghosts were posted. I wish I knew the identity of Caden's secret buddy so I could hug them again and again. They have no idea how much it means to have my son included like any other kid on the block. I'm generally thankful to have him be acknowledged at all but to have him be so accepted was unexpected and humbling. In our home, thanksgiving is coming over a month early thanks to our ghost in the window.
Friday, October 10, 2008
If you didn't have a favorite on Dancing With the Stars, well you do now! All we hear from the participants on the show is how tight their schedule is by the time they are informed if they survived for one more week of competition to choreographing and practicing a dance, getting fit for a costume, dress rehearsals, promotions, etc etc etc. Yet somewhere in that busyness, Australian professional ballroom dancer Kym Johnson is working with the Down Syndrome Association of LA to hold weekly dance lessons for individuals with DS. She says, "Seeing how much they enjoy doing the dances, it’s fun for me. It’s kind of selfish, actually.” She even hopes that this may lead to a performance for the group in November. How awesome is that? Her partner on the show is NFL star Warren Sapp so don't forget to vote for them this week! For more on Kym's classes with the DSA of LA, read a newspaper article here.
Tuesday, October 7, 2008
Monday, October 6, 2008
October is Down Syndrome Awareness Month. In celebration, many locations across the country will be holding Buddy Walks. You can find one near you here. Just type in your zip in the box at the top.
Also, from September 26th- October 9th, Regal Entertainment Group will air this special public service announcement in 6,700 screens across the country.The Today Show Co-Anchor Meredith Vieira, Actor John C. McGinley, Baseball Star Albert Pujols of the St. Louis Cardinals, Access Hollywood Co-Host Nancy O’Dell, and former actor from the TV series 'Life Goes On' Chris Burke, and other self-advocates have come together to help raise the awareness for people with Down syndrome. Find a Regal Cinema location near you here.
Thursday, October 2, 2008
Last Friday I went to an area Gold's Gym while Caden was at his special ed preschool. There were signs everywhere requesting volunteers for the regional Special Olympics competition being held two days later on Sunday. The gym was hosting the weightlifting events and the remaining events were being held at 3 other local venues. I was shocked that this was the first I'd even heard about the S.O. being held in my town. I read the daily newspaper out of Harrisburg regularly as well as two weekly small-town papers. There was NOT ONE mention in any of these papers about these Games. No wonder my gym still needed volunteers. I signed up and even volunteered the Tank as well. Cool beans.
On to spinning class. At the end of class during the stretches, the instructor got the group talking about weekend college football games. As they drained that topic, someone asked "What else is going on this weekend?" I waited and could not believe that the instructor didn't mention that her employer was hosting these games. I blurted out "The Special Olympics will be RIGHT HERE at the gym on Sunday!" Cricket, cricket. Silence. No one even looked at me. Finally from behind me someone mentioned upcoming high school football games and that was that.
Sunday arrived and the Tank and I were ready to go when Caden decided to have one last poopie explosion in his diaper before we hit the door. We were taking Caden with us since my gym offers childcare and he might even want to watch some of the competition. Now we were running late but there is just no rushing our kid. He runs down our front walk only to hit the sidewalk and stop to dance. Then a run over to the car parked behind ours so he can blow kisses to his handsome reflection in the shiny door. As he's finally climbing into the car seat, he notices the velcro on his shoes is pretty cool and bends down to have a few rips at that. AAGGHHH! After getting Caden buckled in, I take a deep breath to revive what little remains of my former Type A personality and tell the Tank to step on it. We go no further than 3 blocks and traffic is stopped. What NOW? I see police cars and people running down the center of the street...what the hay? And then I spot the torch. Held up high over the head of a man with Down syndrome. It's the torch run to kick off the Games. The torch bearer is surrounded by other athletes and volunteers as they run up to the middle school for the opening ceremony. Frank breaks out his camera and chases after them. I bust into tears.
We are walking distance from my house yet I had no idea that this procession would be passing by this morning. Obviously my neighbors were also in the dark as there is NOT ONE person lining the route. Nobody to cheer them on. I can only imagine that one day Caden may be the young man carrying the torch. If so, I can promise you this: there will be press and advance notice about the Games. But for today's competitors, I am angry at the lack of community support and filled with a determination. I jump into the driver's seat, back up and zoom down to the next intersection, ditching the Tank. I hop out as the procession approaches, clapping and yelling like a mad woman. "Way to go! Go get 'em today and have fun! Looking good!" Everyone in the runner's group says thank you and offers a wave, even the guy carrying the torch. In fact he hoisted it even higher with pride. I continue bawling as they run out of sight. Then I remember to drive back and find my stranded husband.
At the gym I am especially pleased at the number of volunteers that arrive. There were even 2 current world record holders in powerlifting helping out. Once the bench press got under way, the Tank and I were no longer needed as volunteers but we stayed to serve as cheerleaders. The only people in this back room were the athletes, their coaches and some family (this event brought teams from many counties away so most athletes had no family present) and the volunteers. I was peeved that out of all the gym members who came to work out that morning, NOT ONE bothered to so much as peek into this room. There was a big welcome table in front of the main door so there was no mistaking that the S.O. were being held there at that moment. Just five minutes of cheering from each of those gym members, or from even half of them, would have taken so little effort yet meant so much to these amazing athletes.
And about these athletes, I can say without a doubt that they are among the best on the planet. Their support and respect for each other, their joy and pride in simply being a part of the day, their sportsmanship and camaraderie was all exemplary. I had a frog in my throat as I struggled to hold back tears. I clapped till my hands hurt, gave out high-fives and even some hugs and had my soul filled to the brink with inspiration and hope. The summer Beijing Olympic games were impressive and Michael Phelps is awesome but this... was... beautiful.
I try to imagine Caden competing in 20 years. I hope that if we as his family cannot attend for whatever reason that there are volunteers or, dare I dream, spectators to encourage and congratulate his efforts. I hope that the local press will not only advertise the Games in advance but then will report on the results afterwards. These competitors deserve nothing less. They trained hard, some traveled far, they did their best and they deserve some type of recognition from the community.
I hope other regions are more keyed in to their S.O. programs. I truly hope that my town is not representative of others but just in case, here is the Special Olympics website where you can find local events and volunteer opportunities for yourself. Use the "find a location" button at the top of the page. And then go support others and enjoy!
Friday, September 26, 2008
The Kennedy-Brownback bill, also known as the Prenatally and Postnatally Diagnosed Conditions Awareness Act and co-sponsored by John McCain, was passed by the Senate on Tuesday and the House joined them yesterday. Now on to the President and it will be law - woohoo! This is an amazing collaborative effort between advocates on both sides of the abortion issues. Those that are pro-life hope that more babies prenatally diagnosed will be born rather than terminated and those that are pro-choice are creating a more informed and thus empowering choice for women. Having experienced a prenatal diagnosis, I can personally attest to the fact that the doctors delivering the news do NOT provide accurate up-to-date or supportive information. A woman is not making a true choice when the only option explained comprehensively is abortion.
Medical professionals receive little if any training on persons with disabilities in medical school or during their residencies. My OB pointedly said that he knew little about Down syndrome because that is the pediatrician's realm. However you don't see a pediatrician if the baby is never born. Any info pulled together while pregnant tends to be about the increased risk of certain medical conditions associated with DS. I know the doctors have liability issues and need to inform their patients of all these negative possibilities to cover themselves. However they completely neglect to inform their patients of all the positive probabilities or of all the support systems and resources available. They leave a woman scared out of her mind, pregnant with a condition rather than a loved and wanted child. It is no wonder that termination rates are over 90% after receiving a prenatal diagnosis.
My genetic counselor offered to schedule an abortion for me. She even recommended that we go ahead and make the appointment with the knowledge that I could cancel it later should I "change my mind". She made that option easy. She did not offer to schedule an appointment with a social worker, a special education teacher, an Early Intervention therapist, or even a parent of a child with Down. I can reflect now that I had NO accurate representation of what life would truly be like with my son. That was a complete disservice to me as a patient and as a woman trying to gather as much information as possible to make the right decision for my family.
My doctor had diagnosed hydrocephalus, cardiac calcification, an enlarged abdomen, a misshaped bladder with possible kidney reflux, among other things throughout the pregnancy. Each ultrasound seemed to find something new. Then 3 weeks before the due date, the blood flow and pressure to the baby through the umbilical cord was decreasing. He appeared underweight and there was also suspected meconium aspiration. Labor was induced and with each contraction his heart rate dropped. A bed was prepared for Caden in the NICU (Newborn Intensive Care Unit) whose staff was present in the delivery room, ready to whisk my baby away. Instead Caden came out pink and screaming. He got a 9 on his Apgars, was a pound heavier than they predicted and had none of the expected problems. He did have the extra chromosome and he did develop jaundice which kept us in the hospital for five days but he didn't spend one second in the NICU. I very much respect my OB and know he was doing his absolute best for us. Still, if he could be so wrong about Caden's prognosis in the short-term, how could he be expected to provide a long-term prognosis when I first received the diagnosis? He referenced "quality of life" several times with the insinuation that my son's might be compromised. Yet I could feel this little guy kicking, turning and hiccuping in my belly and nothing felt out of the ordinary. Thank goodness I listened to my pregnant gut and not my well-intentioned though ill-advising doctor. I shudder to think how close I came to losing the best thing that ever happened to me.
This bill is a step to remedy this whole process. It provides for families to receive scientifically sound information about the nature of the condition involved, as well as to help them make connections with support services, websites, hotlines and parent networks. The bill also provides for the development of a national clearinghouse of information for parents of children with disabilities, expansion of peer-support programs, the development of a national registry of families wishing to adopt children with disabilities, and education programs for health care providers who give parents the results of prenatal tests.
The political parties might be jousting over the financial bail-out but I am thrilled to see them pull together to decidedly give women the power of a choice that is informed. This is politics working for the people. This gives me hope.
Thursday, September 25, 2008
Monday, September 22, 2008
What a way to return to the movies! I have not seen a movie outside my home since Caden was born. Well, I did try to take him to a couple of those free Family Day shows that various cineplexes offered over the summer but we never lasted more than 20 minutes and I don't count the cartoons they showed as "going to the movies" anyway.
Praying with Lior is a must-see. The documentary follows a 13-year-old boy with Down syndrome through his bar mitzvah. Its themes however cross all religions and will really make you ponder the meaning of faith, prayer and ritual. It will make you think about community, tolerance, inclusion and family. It's so beautiful and moving I'm welling up again just writing about it. I was emotionally exhausted after seeing it and am still thinking about its storyline today. I love when a film has the power to do that to a viewer.
At various points I was sobbing with joy, sadness, pride, despair, even simultaneously with laughter. Yes, I was sobbing. It was embarrassing the amount of saltwater rolling off my face. Fortunately snacks had been provided beforehand because all I had to catch my tears with was a cocktail napkin I'd shoved into my empty Dixie cup. Unfortunately it was smeared with the frosting off a chocolate cookie which blended rather well with my mascara to create an extreme work of art on my face. At least I was not boohooing alone. The Tank was choked up. I heard sniffles and noses being blown everywhere. I saw hands wiping cheeks from the silhouettes seated in the rows before us. The lady directly in front of us even crumpled onto a neighboring shoulder (hopefully it was someone she knew). No one was unaffected.
We had the added bonus of a Q and A session with the filmmaker directly afterwards which was equally amazing. I loved the questions that emerged and the dialogue the film was creating. Quite an impressive night.
There's a trailer on the website as well as a schedule of screenings. The DVD isn't out yet so I strongly suggest attending one of these screenings if it's in your neck of the woods. Don't forget your Kleenex.
Friday, September 19, 2008
Here's the deal with Caden's schooling for this year: he attends a special education preschool two mornings a week where he also receives his speech, physical and occupational therapies. There are 7 children, one teacher, one aide, and the 3 therapists in one room so lots of supervision.
He also attends an inclusive preschool two mornings a week where he is the only child with an IEP (Individual Education Plan used for children in special ed programs). Five hours a month, he is joined there by a support teacher but the rest of the time, he's gotta hold his own. There are 12 kids there with one teacher and one aide in 2 rooms so a lot less adult supervision. Also, no one there knows sign language which is Caden's primary means of communication.
Wednesday, September 17, 2008
We waited 27 months for Caden to start walking and it finally happened one year ago this month. So in honor of that momentous milestone, here's the celebration video I made last year. He hasn't slowed down since. I used to be able to set him down in a room with a reasonable expectation that he would be in the same spot 5 minutes later. Now I'm lucky if he's still for 5 seconds!
Monday, September 15, 2008
"Hi guys!" With that greeting, a fit teenage boy suddenly jumped into the water beside us.
The Tank and I had taken Caden to a creek that runs through a local park along with the Tank's father and brother. Caden likes to sit in the shallow water in the shade and throw stones into the creek. Sometimes he breaks out his engineering skills and builds a dam but today we were just doing the stone-throwing thing. He finds it particularly hilarious when a big round rock pitched just so makes a deep kerplunk sound as the water swallows it.
When this young teenager jumped in to join us, I was really caught off-guard. I hadn't heard him approaching and he seemed to come out of nowhere to play with us. But more than that, I was surprised to recognize him. This was the young man with Down syndrome I had spotted at the pool a couple months back (see post here). I distinctly remember being impressed with him that day, swimming and diving alone, tall and fit for his age. Now here he was talking about the new Incredible Hulk movie to the Tank as if they were long-time pals. I looked around to see who might have brought him to the park and there was his mother approaching us. My heart rate started rising with anticipation. I feel so indebted to the parents who have gone before us for they are the ones who demanded proper medical care, education, inclusion and respect for children with Down syndrome and this has made our journey with Caden that much easier. I always want to reach out, say thank you, borrow some advice and yet not come across as some random crazy lady when I meet other parents.
She unfolded a camping chair close to us and said "Whenever I bring my son here, I have to allow at least 2 hours. He loves to play in the water." I jumped at the opening. "Me too! That's my son there." I pointed, hoping she would notice Caden also had an extra chromosome. Of course she did. We shook hands and half an hour later I'd learned that her son was 19 years old and was the first child with special needs to receive an inclusive education in my school district. Ever. She said she had to fight every step of the way but she had made it happen. She was obviously a strong advocate and very committed to presenting her son with numerous and varied opportunities. He was the first child to take gymnastics at the same location where I have Caden enrolled, coincidentally. They tried therapeutic horseback riding, aquatherapy, even music therapy which Caden also receives. Her son has a gym membership with a personal trainer and will be a junior in high school. We discussed medical care, community acceptance, and even shared how we dealt with the initial diagnosis. I carefully observed her son, how he interacted, how he spoke, how "normal" he seemed talking to my single brother-in-law about girls.
I began to feel lost in time. Would I be this woman in 16 years and did she see in me her 16 year journey to this moment? I felt a karmic torch being passed and was overwhelmed with emotion. My heart soared and because I didn't want to cry in front of her (again that random crazy lady paranoia), I told the Tank it was time to go. I thanked this amazing woman for her time, for sharing, for the inspiration, and most importantly for going before us. She looked a little surprised and gave me a what-did-I-do look. She had just been doing what was best for her son, never anticipating it might impact other lives. I squashed the urge to hug her and waved goodbye. "Bye guys!" her son called after us as cheerfully as he had first greeted us.
I couldn't help but look at Caden and think "Wow, buddy, we have some big shoes to fill." But those big shoes blazed the trail for us and I will silently thank them every step of the way while hoping we can do a little trail maintenance ourselves for those who will follow.
Wednesday, September 10, 2008
Friday, September 5, 2008
Whenever the Tank sings be it a Wiggles tune or U2, Caden gets very agitated. He whines and acts like it's hurting him. Seriously. This morning the two of them were playing a Raffi CD but when the Tank started in on the chorus, Caden not only told him to stop but he also signed the word "stop" just to make sure he came across clearly. The Tank looked crushed, asking "What's so bad about my singing?". It's really starting to give him a complex because though I cannot sing in tune whatsoever, Caden has no problem with my crooning. Now we have a new form of discipline out of it. Whenever Caden balks at something we can threaten "You better finish your peas or Daddy's gonna start singing!"
Thursday, September 4, 2008
And this part of Sarah Palin's speech had me in tears:
And in April, my husband Todd and I welcomed our littlest one into the world, a perfectly beautiful baby boy named Trig. From the inside, no family ever seems typical.
That's how it is with us.
Our family has the same ups and downs as any other ... the same challenges and the same joys.
Sometimes even the greatest joys bring challenge.
And children with special needs inspire a special love.
To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters.
I pledge to you that if we are elected, you will have a friend and advocate in the White House.
I believe her. She has already raised awareness about Down syndrome. Trig is a rockstar in his own right. The cameras ate him up. I hope that parents given a prenatal diagnosis of Trisomy 21 will look at Palin and see that having a special needs child does NOT destroy your life or your family. Her career is blossoming, she is still married to her high school sweetheart and it is obvious that Trig is very loved by his family. He is not suffering, he is not afflicted and he may just learn to walk in the White House. How cool is that?!
Tuesday, September 2, 2008
Friday, August 29, 2008
I am so excited I can barely sit still. High five's all-around....well, I'm the only one in the house right now and Caden is asleep so high five to you in cyberspace! Heck, let's throw in a belly bump while we're at it. That's what I'm talking about!!! Gov. Palin is McCain's running mate!!!!!!!
Alaska governor Sarah Palin is a supermom with five kids ranging in age from one to 19 years old. Her oldest is in the Army and preparing to ship to Iraq. She took only 3 days off work after having her youngest, a boy named Trig who happens to have Down syndrome. Can you see Trig playing in the White House? In the Oval Office even? How about on the lawn at the White House Easter Egg Hunt or Christmas tree-lighting? She sounds like an amazing woman with a beautiful family, quite an array of hobbies and accomplishments, received a prenatal diagnosis, is considered a maverick politician (ooohhh, I really like that part) and this will do SOOOOO much to bring awareness to the disability community. You go, girl! You make Trig and Caden proud.
Tuesday, August 26, 2008
My son is now Lady Love Cool Caden. We went to a summer festival put on by a local fire department and Caden started dancing to the bluegrass band. Then a cute girl ran up and grabbed his hands to dance with her. It wasn't long before her younger sister cut in and suddenly Caden was the center of a sibling battle. Like most men, he seemed a little confused by what the problem was with the girls but he just kept dancing through it all.
Thursday, August 21, 2008
Tuesday, August 19, 2008
Tropic Thunder had an opening weekend of $26 million in box office sales. Compare that to Stiller's Night at the Museum (not one of his better films) which opened higher with $31M or Downey's Ironman which opened earlier this summer with $99M in sales. The previous summer comedy released, Step Brothers, also earned higher sales with $30M its opening weekend. Heck even Mummy 3 (there was a Mummy 2???) earned $42.4M. Not as successful as one would expect with all the big name stars in TT and its huge $100M plus filming budget.
I'm just saying.
Friday, August 15, 2008
I took a picture of this dragonfly because I thought it was cool the way you could see the leaf behind it through the wings. I had my point-and-shoot camera with me so I was actually pretty darn close to the subject to get the shot, no zoom lens or anything fancy like that. I was very worried that the dragonfly might attack me but fortunately it stayed in place till I got the shot. It was only when I returned home, uploaded the pics to my computer and took another look at this shot on the screen that I saw the GINORMOUS SPIDER hanging onto the leaf under the dragonfly. Do you have any idea how freakin' close my head was to that thing????? And you know it was a man-eating variety! I nearly passed out when I realized it had been there. Does anyone else have itchy skin after looking at this? AAAAAAHHHHHH!!!!
Wednesday, August 13, 2008
Courtesy of Dave Hingsburger. Please print some up (he has offered permission) and pass them out as a polite educational tool whenever you hear the r-word being used. Or you can request free copies to be sent to you courtesy of Active Grey Matter . We're all about courtesy!