tragedy in the little world of Down syndrome-Angel Behind the Rocking Chair

when Ciarra was born, someone very dear to me sent me a copy of the book Angel Behind the Rocking Chair, by Pam Vredevelt. It was the first book I had ever read about DS, and it touched my heart. It was about a little boy named Nathan, who has DS, and the ways he taught them to be closer to God.
Chapter 10 was called "Wanderings" and for any parent of a child with DS who has been labeled an "escape artist" you will know what that chapter is about. In this story, it was about Nathan's constant wandering, and his family's battle to keep him safe. The broader story was about how we all wander from God sometimes. The chapter detailed some humorous, but scary times that nathan wandered off. To a neighbors house, to the snowy front yard, to anywhere his tiny feet could carry him in search of adventure.



Fast forward ten years. Nathan is now a teen, and he loves the Portland Trail Blazers. He is at the Rose Garden with family and friends, and Nathan the wanderer finds a bathroom door locked, and goes looking for another one. somehow, he gets turned around, and ends up outside. For reasons no one will ever know, he tries to cross Interstate 5. This time, there is no one to catch him before danger strikes. Hit by one car, he is hurled headfirst into another. Critically injured. His family, looking for him, hears wors that a young teen has been struck by a car on the highway. With sinking hearts, they know it must be their Nathan.

Nathan Vredevelt is in critical condition at Legacy Emanuel Hospital & Health Center. His injuries are extensive, including fractures and massive head trauma. His family is with him. His sister Jessie writes:

Nathan Vredevelt is 16 years old and loved by so many.



Sunday night March 1, 2009, Nathan was struck by a car in Portland, Oregon. Nathan is in critical condition. He sustained broken thighs, pelvis and a head trauma. We are in the waiting game now; waiting for the swelling of his brain to go down before the Doctors can estimate how extensive his injuries are. He's being well cared for by the staff at Emmaunel Hospital and by his family.

We ask that everyone please continue to pray for Nathan and for our family as we navigate this difficult time. For the time being, the hospital is limiting Nathan's visitors to immediate family only.

We set up this site to pass on updates from our family and as a place for people to share their love for Nathan. We look forward to the encouragement we will get from your stories and memories with Nathan. We feel your prayers, your support is overwhelmingly beautiful. Jesus is Lord and he is cradeling Nathan as the Doctors keep him comfortable. God is good and the best is yet to come.

**Update Tuesday, March 3rd 11:26 am


Mom and Dad went home last night and finally got some sleep. Ben, David Dempsy, and Alex Lesser stayed with Nathan through the night, playing the guitar and singing worship songs, I know in my spirit that Nathan was participating in his spirit. I came in to be with Nathan this am at 9 and the boys went to bed. Nathan's wonderful nurse Noel updated me that the pressure in Nathan’s brain had increased from a stable pt.5 to the 30's this am at around 6. They scheduled him for CAT scan later today. They are preparing to take him down now as I am typing this. Good news is that around 10:30 am Nathans cranial pressure went back down to pt.6 this is stable and our nurse is happy with where it is at.


The night of Nathan's accident they took Nathan in for neurosurgery and preformed a crainioctomy (spelling?) They removed a portion of his skull on the right side of his head to relive the intense pressure from the impact. Nathan was under the care of one of the best neurosurgeons in the Portland area, Dr. Jeff Chen. His quiet demeanor put us all at peace, even as he was very straight forward about how bad Nathan's condition was. Mom asserted to Dr. Chen that she was getting the feeling that he wasn't hopeful, Dr. Chen said that the procedure went without a flaw but the extent of the brain injury is probably sever and that he, indeed, wasn't hopeful.


We are praying that God will free Nathan, whether that means complete healing and restoration, or, heaven. I can honestly say we all, Mom Dad Ben and I, have total peace. If Nathan goes to be with the Lord we are all jealous. Dad was saying how Nathan will be a choir director in Heaven... He'll be rocking out with Jesus all day long and he'll be able to sing on tune!

I will update with results from the CAT scan. Thank you for your prayers, we feel them, we are being carried by God's love and I can feel Jesus cradling Nathan. We love you all. Jessie

Nathan's story has inspired so many people, he was a very real person even though we never met him. My heart goes out to his family. I hope that you will send prayers for him, too. Having watched our friend's son Nicholas make a miraculous recovery from a very similar accident (right down to the broken femur) we know that God hears our prayers. Join me in making them extra loud and insistent?

ketchup

catching up here:

I and the kids had a nasty virus/cold thing for a few weeks, it kicked our butts. Coincidentally, my computer ALSO caught a bug, it was really imeding my writing abilities, dropping letters etc, it was driving me nutty frankly. Thankfully, we are all better now. So some "ketchup":

Valentines was nice, Jim brought all of us gifts, which was very sweet. Ciarra is such a daddy's girl.



Jesse is on the allstars basketball team. He is not as strong in basketball as in football, but I was very proud of him for trying out this year. He has refused to for years because he knows he won't be "the best", and he is very self conscious of himself when it comes to sports. He is a very good football player. The experience he is gaining on this team has been wonderful. His coach does an amazing job of playing all the kids, even the less capable ones. Jesse is very good at defense, he is a mean rebounder, but not as great at offense. He has had some good plays and some not so good. Regardless, his team won the tournament this weekend! I was excited for them. He is #31.




A friend of ours young son was involved in a terrible car accident. His name is Nick. He suffered massive head injuries and other broken bones. 6 weeks after the accident, Nick left the hospital. The kid who wasnt supposed to make it did, and he is thriving. He still has some effects of traumatic brain injury, but he is a walking talking miracle. we are SO profoundly grateful he was spared. he has a wonderful community and a terrific family, SO many prayers went up. Thank God for the biggest favors.

another little friend was not so lucky. Our little buddy Joshua died this week. Joshie was 15, he had hypoplastic left heart syndrome, and he was never supposed to survive infancy. Joshs big dark eyelashes and beautiful smile will remain with us forever. His funeral is tonight, althought we are getting walloped with snow and may not make it over. Watching two young boys go through so much makes us treasure every minute with our own children. There is a commercial that says "Life happens fast"...that is so true. Hug your kids today.

while I was wallowing

a few months before Christmas last year, I re-discovered Reece's Rainbow. Immediately my heart became heavy, the weight of so many children with Down syndrome and other disabilities with so much need was tremendous. I have a heart that doesn't do well leaving things alone, and so I found myself sucked in, desperate to help. One little boy grabbed my heart so tightly, his name was Aleksa, and oh, how I wanted to make him mine.



Aleksa had the softest little smile, I imagined teaching him to ride a bike and dressing him in warm jammies, snuggling in with him and loving him so much that he would never even remember that he had been an orphan once. For months, I poured my soul into RR, wanting to make a difference for these precious children. I helped spread the word, and in some tiny ways maybe made a difference. I was heartened to see several of the kids on the list coming home, and grateful to be closely involved when one family went to bring their children home and helping from a bit further away when another came home needing some help with feeding. I loved being a part of RR in my small way. But it was never enough.






Children were still dying, bureaucracy was still costing these children families, costs were exorbitant. I was thrilled to see so many coming home, but at the same time growing more and more sad because I couldn't resolve my own desires with reality. I wanted Aleksa, and he needed a family. But he needed a mother who was absolutely sure she wanted him for him, and that the ghosts of another little boy named Alex weren't playing a part in the overwhelming desire to bring him home. Aleksa was not Alex, and I still needed to get my own head screwed on straight. There was also the matter of a promise we had made to one another, that we would never foster or adopt again, because of the pain of losing our Alex. It was unfair for any child to be brought into a family that weren't all committed to him 100%, and we couldn't be, that was just the truth. We also didn't have enough money, enough space, and frankly the time needed to do this right. Owning our own business means long hours, and I would not go into this unless I could give this child everything they needed, having a frazzled, emotional mom would have been the last thing he needed.

I felt like adopting was something my heart desired, but my mind knew better. And I also felt like we had been drug through a war once before, and I was terrified to bring any chance of that same hurt to my family again. I let go of the dream of adopting, but my heart was still in RR. I could be, as they said, a cheerleader on the sidelines. I could live with that.

Aleksa eventually was adopted by a wonderful family that could meet his needs much better than we could have. His smiling face on their blog was precious to me, he was home. It still hurt a little, I had imagined him in my house, in my arms. But he was alive, and he was thriving, and his new mom loved him so much, and the decision to bring him home was one they all made, together. I felt a sense of relief, but also an overwhelming sense of being so useless and ineffective for these children. I wondered if my friends and family were sick of me shoving pictures in their faces, asking for just one more dollar.




When the children Iknew by name started to die, I started to fall apart. I took it personally, I couldn't save them, and it was eating me alive. It was incredibly egotistical to think *I* could. I was just a tiny piece of a huge movement to bring these kids home. I would never be "Mom" to any of them, I would never have enough money to make any kind of big difference. My heart was being broken. I began to pull back, and to just go to the sites of the families who had brought children home already, to celebrate the ones that were saved, Ava, Alex, Micah and Emma, Evan, Xander & Grifyn, Owen, Vitya, Katie and David, beautiful Caleb. And I tried to forget those haunting faces left behind. This year's Christmas angel program went off without a word from me. I saw the requests for money on the blogs, "another one". I chose to look away, to spare myself that kind of agony. I didn't want to see any more children die. I didn't want to see another adoption fall through at the last minute because some overblown ego somewhere decided to play God with a child's life. I wanted to protect myself. It was one of the most selfish things I have ever done.



The little girl pictured above died this week. Her name was Margarita, and she died waiting for a family to come for her. Through RR, I had seen how many people had desperately wanted her, but been unable to get her because of money. I thought what a wonderful sister she would make for Ciarra, but she never felt like "mine". She did feel like "one of ours" though. I saw her precious face and knew her days were numbered, but I always believed she would come home, because so many people wanted to make her theirs. She would come home like the others before her, be doted on and adored, taught what it means to be loved unconditionally. Soon, we would see her dancing in her tutu with her sisters, cradled by her new daddy, loved...home.

In the months of me turning my back because it was too painful to look, she died, alone, never knowing the love of a family. I am ashamed of myself in a way you cannot understand unless you have been here, too. Have you? Have you gotten so you are afraid to look, afraid to love? Have you allowed yourself to think "another one" and move on with your day? Do you, as I do, feel a great sense of selfishness, that maybe if you had kept trying, she would have had a chance? We CANNOT save every child. We will always have to face losing some of them. But that can't stop us from saving some of them.



In the time when I was too busy worrying about my own emotional comfort level, Katerina died. she shared Ciarra's crazy eyebrows, clear skin, and genetic makeup. She had a chance, but she needed people like me (and you?) to keep caring. Katerina, nobody's daughter, died this week, alone. Where was I when she passed into her Father's arms? Where were you?

It hurts, and it is going to keep on hurting, to care about these children. andrea runs Reece's rainbow, and she lives with it every day. More importantly, the children live with it every day. They don't have the option of turning away. They are dying hungry and unloved, sick and needing us. Maybe we cannot save them all. But we can try. Or we can live with the face we see in the mirror every day.

TODAY, choose to do something. Don't turn away. They need us.

reposting

I have been asked by several different people HOW we got Ciarra reading. I thought it might be nice to have things in one place, to refer to as needed. So here goes!!

Nouns & Sounds was one of the earliest CD Rom games we used. It is a FANTASTIC and easily modified program for teaching kids about the world around them. It has the child match the SOUND of something to the onject that makes the sound. You can have a very few objects to choose from, or LOTS of different choices. This program was hands down hugely responsible for teaching Ciarra the NAMES of things.

you can request a demo CD to see if you like it.

STORY BOXES make reading interactive. An old shoebox with various items that are illustarted in the story can help make the story come alive for visual learners:
A story box is a way for young children to experience a story. When selecting a story for you child, choose one that is simple and tells about familiar objects and concepts. Collect corresponding items in a box or bag. As you read the story to your child, allow him/her to hold the item. Examples:

Chicka, Chicka, Boom, Boom, by Bill Martin Jr. and John Archambault, National Braille Press, Simon & Schuster, (Print/Braille)
Contents Magnetic Alphabet, Drum, Coconut

Jennifer's Messes, by Suzette Wright, American Printing House for the Blind.
Contents: Cheerios, Barrettes, (2) Coins, Comb, Pencil, Keys, Doll, Pretzel

Giggiy-Wiggly, Snickety Snick, by R. Supraner, Parents' Magazine Press.
Contents Hard, Soft, Bumpy, Smooth, Tickly, Sharp, Sticky, Stretch, Cold, Hot, Crunchy, Squishy, Fluffy, Curly, Straight.

Good Night, Everyone! By H. Ziefert, Little, Brown & Co.
Contents Stuffed Animals (Bear, Monkey, Mouse, Lamb).

Hello Kitty's Bedtime Search, by S. Bright, Random House.
Contents Socks, Necklace, Tee Shirt, Blanket, Teddy Bear.

If You Give A Mouse A Cookie, By Laura Joffe Numeroff, Harper & Row.
Contents Cookie, Cup, Milk Container, Straw, Mirror, Scissors, Dustbroom, Sponge, Blanket, Pillow, Crayons, Tape, Paper

Suppertime with Frieda Fuzzypaws, by Cyndy Skekeus.
Contents Cookies, Plate, Cup, Pasta, Paper Crayon, Paper Cookie.

Teddy And The Mice, by Brain Ax, Terry's Friend's Series (Board Book).
Contents: Small Wagon or Dump Truck, Blocks, Mice, Nuts, Teddy Bear

The Foot Book, by Dr. Seuss, Random House.
Contents Slippers, Towels, Cotton Balls, Toy Clown, Big Shoes/Small Shoes.

The Gingerbread Man, A Pudgy Pals Board Book.
Contents Cookie, Cookie Cutter (Tin), Stuffed Fox, Cat, Cow

The Indoor Noisy Book, by M. W. Brown, Harper & Row.
Contents Household Objects That Make Sound: Broom, Spoons Clinking, Door Slamming, Eating Raw Carrots or Celery, Slurping Pudding, Footsteps, Telephone Ringing.

The Jacket I Wear In The Snow, by Shirely Nellzel, Scholastic Press.
Contents Red Wool Hat and Scarf, Zippered Jacket, Sweater, Boots, Long Underwear, Socks, Jeans.

The Little Engine That Could, by Watty Piper, Platt & Munk Publishers.
Contents Dolls, Balls, Toy Engine, Sailboats, Toy Animals, Clown

The Longest Noodle, by Suzette Wright, American Printing House for the Blind.
Contents Noodle, Fork, Shoelace, Jump Rope, Ribbon, Yarn.

The Runaway Bunny, by Margaret Wise Brown, Harper & Row.
Contents Toy Fish, Rock, Gardening Tools, Watering Can, Toy Bird, Sailboat, StuffedBunny, Carrot.

The Saucepan Game, by J. Ormerod., Lee & Shepard Books.
Contents Pan with a Lid, Stuffed Toy Cat.

The Sweet Smells of Christmas, by Patricia Scarry, (Scratch and sniff). Golden Press
Contents Cinnamon, Pine Cone, Candy Cane, Spirit of Peppermint, Ginger, Cocoa

The Three Little Kittens, by Kate Gleeson, Golden Books.
Contents (3) Stuffed Kittens, (3) Small Pie Tins, Soap, Mittens; Optional Clothes Line & Clips.

The Three Little Pigs, Golden Sound Story, Golden Press.
Contents Brick, Sticks, Hammer, Hat, Straw.

Underwear, by Mary Elise Monsell, National Braille Press, (Print/Braille)
Contents Different Kinds of Underwear, Slippers.

Scholastic offers some FANTASTIC learning programs based on Clifford the Big Red Dog. Unlike many other kids software, the Clifford CD Roms dont skip around, they work through word families, one by one, until they are really learned. They are very short, engaging activities, and they are VERY user-friendly.

Clifford Phonics CD rom and book set is a GREAT resource!



CLIFFORD BIG DOG MUSICAL MEMORY GAMES CD-ROM
can be found on EBAY very often



Clifford the Big Red Dog Thinking Adventures is also an Ebay find.



Next, we swear by Cricksofts line of products, expecially Clicker 5 and Clicker paint. They utilize many different kinds of graphics programs such as PECS, etc to help children write using symbols. As the child grows, the program adjusts, less symbols, more words, visual and verbal prompts, spell checking, etc.




Adding Clicker paint to the product enhances it tenfold. Both programs work in concert with the FREE grids at learninggrids.com , where you can download and use thousands of pre-made grids that teach VERY specific topics. Your child can write book reports on virtually any subject, use the word processor to talk for them, insert their own drawings into reports and stories, or even capture JPG or BMP files off the home computer to use in their stories.



well, there are some of the suggestions I give when asked. More than anything, though, READ yourself. Show your child that reading is fun. Enjoy it, show them that. Make books available at all times, and dont worry about mess. Just live in the moment.

Aislynn's First Birthday

Maine boy with DS scores BIG

na na na na

Two weeks ago today a bunch of liberal Democrats gleefully sang this song to George W. Bush at Obama's inauguration, a disgraceful display of bad manners and gloating.

Heh, this one's for you Tom Daschle:




Tom Daschle has withdrawn his nomination for HHS secretary.

Na Na Na....Goodbye.

Hat Tip http://2conservativewomen.blogspot.com/

and here I thought I had thought of everything...

We have a wonderful Pediatrician who has seen Ciarra since before birth. He was there when we got the news she might have DS, there when we decided not to test further, and there when she was born. I treasure his advice, his groundedness, even his humorous put downs (we go back and forth). But he is a Pediatrician, and Ciarra is not going to be little forever. Already, we deal with "big kid" issues, puberty, periods, even boobs. I thought I had thought of everything. But this, I haven't thought of!

The incidence of adult disabled patients staying with their pediatricians long after their 18th birthday is one of many issues raised in a report released today by The Arc of Massachusetts, an advocacy group for people with intellectual and developmental disabilities.

The study, "Left Out in the Cold: Health Care Experiences of Adults with Intellectual and Developmental Disabilities in Massachusetts," found that many disabled adults face longer waits than most people finding good internists, and that prevents them from get ting the best care for common adult conditions such as hypertension, heart disease, or thyroid disorders.

The report found that, among other reasons, many internists avoid disabled patients because of uneasiness with them.

Our Ped has seen my oldest daughter a few times, past 18. Stuff like sore throats, turned ankles, etc. We have been talking about needing to get her moved over to our Primary Care doc, my doc, but it had never occurred to me that while it might be easy for Kristin, it may not be so easy for Ciarra, when the time comes.

We still have a long time before we will need to start planning that move, but knowing that it is on the horizon gives me time to look around, make a studied decision, and prepare for possible trouble before we really need a doc that will see an adult with Down syndrome. She loves the Doctor, and has no real issues with going, but the future will hold progressively more difficult tests etc for her, and it is good to think ahead and try to be prepared.

my son is the little kid magnet

it never fails, when we are out, if little kids are around, they are on or near him.

Whats in the stimulus that scares me most

American Recovery and Reinvestment Act of 2009

The bill’s health rules will affect “every individual in the United States” (445, 454, 479). Your medical treatments will be tracked electronically by a federal system. Having electronic medical records at your fingertips, easily transferred to a hospital, is beneficial. It will help avoid duplicate tests and errors.

But the bill goes further. One new bureaucracy, the National Coordinator of Health Information Technology, will monitor treatments to make sure your doctor is doing what the federal government deems appropriate and cost effective. The goal is to reduce costs and “guide” your doctor’s decisions (442, 446). These provisions in the stimulus bill are virtually identical to what Daschle prescribed in his 2008 book, “Critical: What We Can Do About the Health-Care Crisis.” According to Daschle, doctors have to give up autonomy and “learn to operate less like solo practitioners.”

Keeping doctors informed of the newest medical findings is important, but enforcing uniformity goes too far.

New Penalties

Hospitals and doctors that are not “meaningful users” of the new system will face penalties. “Meaningful user” isn’t defined in the bill. That will be left to the HHS secretary, who will be empowered to impose “more stringent measures of meaningful use over time” (511, 518, 540-541)

What penalties will deter your doctor from going beyond the electronically delivered protocols when your condition is atypical or you need an experimental treatment? The vagueness is intentional. In his book, Daschle proposed an appointed body with vast powers to make the “tough” decisions elected politicians won’t make.

One quote from the book that is very telling:

"Daschle's solution lies in the Federal Reserve Board, which has overseen the equally complicated financial system with great success."

Commentary by Betsy McCaughey
http://www.bloomberg.com/apps/news?pid=20601039&refer=columnist_mccaughey&sid=aLzfDxfbwhzs



Critical: What We Can Do About the Health-Care Crisis by Tom Daschle
lo and behold, Senator B0 endorsed this book, saying:

The american healthcare system is in crisis,
and workable solutions have been blocked for years by deeply entrenched ideological divisions. Sen. daschle brings fresh thinkin to this problem, and his Federal Reserve for Health concept holds great promise for bridging this intellectual chasm, and, at long last, giving this nation the health car that it deserves."

Imagine the implications for those of us raising children society has already signed off on as "less-than"? When will treatments be withheld so "nature can take its course"? Will heart surgery for the mentally retarded not be "cost-effective" enough?

"Meaningful use" feels an awful lot like "Life unworthy of life", to me.

"A lack of resources caused Germany and other countries to favor those who would recover versus those who would need constant care."

Propaganda slide featuring a chart produced by the Reich Propaganda Office showing that in 1936 the total cost of caring for 880,000 people ill with hereditary disease was 1200 million Reichsmarks, which was almost double the 713 million RM spent on the administration of the national, state, and local government.

Date: 1936
Locale: Germany
Credit: USHMM, courtesy of Roland Klemig
Copyright: USHMM

In 1920, the concept of living beings not worthy of the life they embodied gained impetus with a tract published by two university professors, Karl Binding and Alfred Hoche. Permission for the Destruction of Life Unworthy of Life articulated key implications for people with disabilities. Binding and Hoche called for the killing of people with disabilities, whom they viewed as "incurable idiots" having no will or sense of living. Killing them, therefore, was hardly involuntary euthanasia, that is, the imposition of others' will upon them. This shifted the burden of human existence from simply being alive to requiring an explicit justification for living.

For Binding and Hoche, therefore, the right to live was to be earned, not assumed. One earned the right to live by being a useful economic contributor to society. Chief among the individuals they saw as being useless were those who seemed to have little or no human feeling, or in their terms, "empty human husks" whose only societal function was the consuming of precious resources while contributing nothing to society in return. In Binding and Hoche's terms, they were "useless eaters" whose "ballast lives" could be tossed overboard to better balance the economic ship of state.

Binding and Hoche's polemic was furiously debated across Germany. One strident critic of the Binding and Hoche position was Weald Meltzer, the director of an asylum in Saxony, who held that many of his charges did indeed have the ability to enjoy life inasmuch as their disabilities would allow. In an attempt to support his belief, Meltzer surveyed the parents of his patients to ascertain their perceptions of disability and euthanasia.

To Meltzer's astonishment, the survey results showed a widely held contradiction among the parents that although they had strong emotional ties to their children, they simultaneously expressed, with varying degrees of qualification, a "positive" attitude toward killing them. The results were a harbinger of future public and official perceptions and actions toward people with disabilities. Meltzer's survey was later used as a major rationale for the killing of thousands of people with disabilities under the National Socialists, whose long-held social perceptions of difference coupled with official state prejudice delineated a series of genocidal markers that doomed significant numbers of people with disabilities during the Nazi era.

Propaganda slide featuring three portraits of mentally ill patients. The caption reads, "Idiots!"

Date: Circa 1934
Locale: Germany
Credit: USHMM, courtesy of Marion Davy
Copyright: USHMM



...by the end of World War I, an implicit but palpable public perception of higher economic worth was attached to people without disabilities, and lesser worth was attributed to people with disabilities. Later, the economic worth of human life under the Nazis proved a key distinction for creating and sanctioning genocide against people with disabilities.


ask questions, research, do not just swallow this mess whole. The road to socialism is hidden in the technical language.