September 2005 Issue
Our parent support group has scheduled monthly meetings the first Friday of each month at St. Paul's Lutheran Church, 106 N. Border St., Troy, IL 62294 from 6:30 p.m. - 9:00 p.m. From 55/70, take the Troy/162 exit (#18). Go east on 162 towards Troy. Go 1.3 miles. Turn left on West Clay Street. Parking lot will be on your left.
September 26th. Puttin' for Down Syndrome 1st Annual Charity Golf Tournament and Silent Auction.
It seems a long time since our son Alex was born although it was just 19 months ago. We found out Alex might have Down syndrome just a few hours after he was born. I remember tears, but mostly the fear because of his physical difficulties that first night and beyond. He spent his first month in the hospital. Since then, Alex has made a lot of progress and is doing so much better now. Between all the therapist and doctors our lives are pretty hectic.
Alex has given Cheri and me a tremendous amount of joy. It is because of Alex that we have met some incredible families and some really special kids. So I started to wonder what I could do to raise the public awareness of Down syndrome. I wanted to do something that would be affordable for almost anyone to participate. With the help of some family and the inspiration of the Pujols Foundation, it was decided to have a golf tournament and silent auction to benefit the St. Louis Children's Hospital Down Syndrome Clinic.
The golf tournament will be Monday, September 26th at Clinton Hill Golf Course, 3700 Old Collinsville Road. Swansea, IL 62226 starting at 12 p.m. It will be a four-man scramble with a shotgun start. There will be beverages on the course, followed by dinner under the pavilion, a silent auction and awards ceremony. The cost per person is $75.
For those that don't play golf, please come out with your family and enjoy the dinner, auction, and awards ceremony. Dinner is just $5 for adults, and all kids eat free. We are really hoping some families will arrive around 4 p.m. before the dinner begins about 5. We need to know how many are coming by September 16th. Finally, we are still looking for more golfers and donations.
If you would like to play in the tournament, join us later for dinner or make a donation, please contact Tim Nienhaus at 236-1850 or e-mail Tim at firstname.lastname@example.org.
Regional EventsSeptember 6, 2005. 6:00 - 7:30 p.m. meeting to complete the PUNS (Prioritization of Urgency Needs for Services) Survey to collect information for the Illinois Division of Developmental Disabilities about the needs and preferences of people with developmental disabilities of all ages and their families. Where: IMPACT, 2735 East Broadway, Alton, IL 62002. Contact: Missy Kichline, 462-1411, ext 318.
September 10, 2005. 2005 Walk in the Park. Kiener Plaza. For the fifth year, we are proud to team up with the St. Louis Cardinals at Busch Stadium for a memorable event. The goal of the Walk in the Park and Down Syndrome Awareness Day is to promote understanding and acceptance of people with Down syndrome. The schedule:
This publication is for information only. Before making any financial decisions, please consult your benefits specialist, financial advisor or attorney.
People with special needs are eligible for a number of government benefits through the Social Security Administration (SSA) There are three main kinds of SSA income benefits-all with similar acronyms. Last month, we introduced SSDI, Social Security Disability Insurance. You are eligible for SSDI is you have a disability, have worked and have paid into the Social Security System but, because of a change in circumstances, are now unable to work at your previous level. This month, we introduce Social Security for Disabled Adult Children, sometimes referred to as SSDAC.
Whereas SSDI comes to you based on your own work record, SSDAC is available to you off your parents' work record. SSDAC is an entitlement and is available to you regardless of your assets, as long as you are considered disabled under the Social Security Administration's definition.
To receive SSDAC, you must:
For the purposes of the SSA, 'to have a disability' is defined primarily in terms of capacity to earn money. A person is considered to have a disability if he or she has a physical, cognitive or emotional impairment which makes him or her unable to engage in Substantial Gainful Activity (SGA). For 2004, SGA is defined as employment which can generate $810/month in countable income. This means that if you have impairment and cannot earn that amount on a regular basis, you have a disability for Social Security purposes.
Blindness is considered separately from other disabilities. For Social Security purposes, the designation 'blind' in SSA terms also has income criteria, but for historical reasons, it has been indexed for inflation and it currently significantly higher. If you are blind, your employment is considered Substantial Gainful Activity if you can earn more than $1,350/month.*
To be considered a disabled adult child (DAC) you must have incurred the disabling condition before the age of 22, be over the age of 18 at the time of application and claim the relationship of 'child' as defined by the SSA, to the person on whose work record you are applying.
'Child' always includes biological child (regardless of the parents' marital status) and legally adopted child. 'Child' may include stepchild, equitably adopted child or grandchild depending on the amount of support provided by the record holder to the DAC prior to application.*
You may receive up to 50% of your living parent's benefits and 75% when the parent dies. You may begin to receive DAC benefits from the age of 19 if your vested parent has retired, become disabled or died. Otherwise, you may begin to receive from the date your parent dies or begins to receive SS disability or retirement income. If both parents are receiving Social Security, your benefit will derive from the higher of your parents' benefits. If you are 18 or younger when your parent retires becomes disabled or dies, you will begin receiving benefits as a dependent minor child. At the age of 18, you will have to apply for DAC status in order to continue receiving benefits.
Once established as a DAC beneficiary, you may continue to receive benefits as long as you live or until you are able to sustain SGA as defined above. If your DAC benefits are terminated because you begin to perform SGA you may apply to have those benefits reinstated if, because of changing circumstances, you cannot sustain SGA. Unlike SSDI, there is no waiting period for SSDAC and you may be eligible for back payments of up to six months prior to the date of claim.
Yes. SSDAC is considered unearned income. If, following allowable deductions, the combination of your DAC benefits and any earned income are below a certain level, you will receive some SSI as well. Conversely, if you begin to receive DAC benefits following your parent's retirement, disability or death, and those payments are high enough, you will not receive SSI even if you had been receiving it previously.
Regardless of your age, you become eligible for Medicare 24 months after you begin to receive DAC benefits. Be aware that if you lose SSI solely because you begin to receive DAC benefits or your DAC benefits increase (because, for instance, a retire parent dies), you are still eligible for Medicaid if your assets are less than $2000. This is called Title 19 Medical Assistance. Because of Title 19, you may be eligible for both Medicare and Medicaid.
At a Special Olympics horse show, thirteen-year-old Nick Hogan, a veteran of many years in the saddle, walked around eating a bag of French fries and visiting folks along the shedrow. Several people teasingly asked him for one of his fries, and he would turn away, protecting his snack. As he walked up to me, he fished out a long, shiny fry, dripping with catsup, and extended it toward me. Nick is somewhat limited in his verbal skills, but smiling, he offered the token. His mother, Sandy Hogan, laughed. "You should feel honored. He doesn't share his fries with just anyone."
Well, I absolutely did. I took that piece of potato from him and ate it, trying not to imagine where his fingers might have been as he played around the horse barn.
Nick has Down Syndrome and a spunky, compelling personality that gets him a lot of hugs-and sometimes, sent to "time out." Horseback riding is his primary source of exercise, socializing, and self-esteem, while it also helps to teach him communication skills and discipline.
|Nick Hogan gives a high-five to long-time volunteer Tim Goyne after winning three events at Special Olympics Texas in 2002.|
He was born with a heart murmur (problems with the valves not functioning properly), and holes between the cardiac chambers. He had corrective surgery at only four months old. The condition was causing lung damage, which made it too risky to wait until he weighed ten pounds, or had his first birthday, the usual procedure in such cases.
"Nick is happy and active now, but in addition to his lung damage, he has low muscle tone, as many people with Down Syndrome do," Hogan said. "Because so many organs are muscle-heart, lungs, eyes, tongue, etc.—he gets colds often; he wears glasses; and he has a problem with words."
Exercise to promote muscle tone is very important for Nick, but his fragile health prevents him from playing sports or doing other strenuous activities.
"To run track at Special Olympics, children begin training in February, when it's cold. With Nick's lung condition, he can't tolerate getting chilled," Hogan explained. "We tried him in Special Olympics baseball, but he is susceptible to heat stroke and pneumonia, so it's risky for him to get too hot, or to be outside on high ozone days. He does a little bit of Physical Education at school, but he isn't able to keep up with his classmates running and jumping, so he feels he doesn't fit in."
For Nick, horseback riding is salvation. He has received other therapy from the time he was a baby, first at Child Study Center, then from age three at Early Childhood Intervention, but it wasn't a fun thing for him. His parents learned from his therapists about riding-that it apparently produced good physical results, while giving children a lot of pleasure.
Nick began weekly sessions at Rocky Top Therapy Center when he was four, soon after recovering from reconstructive surgery necessitated by his first operation. When the weather is too hot, or too cold, classes are held inside the enclosed arena. Besides the benefits from the horse's motion, exercises build upper body strength and flexibility, and while the horse walks, the instructor leads riders through various maneuvers. As with many of the other riders, some of his favorites are raising his hands high, swinging his arms from side to side, stretching to touch the toes on one foot, then the other, and trying to reach the horse's ears, then its tail.
Handling the reins helps develop fine motor skills. Nick has very small hands, a characteristic of Down Syndrome, and he has trouble with things requiring finger dexterity, like buttons. Commanding the horse to do various activities requires moving color-coded reins back and forth between the fingers to grip them at the proper length. For instance, the rider needs a shorter rein to back his horse than he uses at a walk.
Riding reinforces Nick's communication skills. He can say some words, and uses sign language. Instructors work on teaching him to connect signs with words, as they do in his school. If he hasn't been taught a sign for something he wants to express, he makes up his own. For "riding" he holds his hands up, in the position of gripping the reins, and says, "Yah hah!" Instead of "walk on," he yells "go," firmly pointing ahead.
Nick's time on the horse also gives him discipline. "Mentally, he's about five," Hogan said. "He has a short attention span, and trouble following direction. Like other children, he will try to defy, and get away with as much as he can. Some women with softer voices have trouble controlling him. Jake is very good for him because he gets tough."1
Jake, his instructor for the previous few years, will say, "Okay, Nick, playtime is over. You have to work now," emphasizing the word "work," with its sign. When Nick doesn't pay attention and follow directions, Jake reinforces his demands with a "time out." Nick has to sit on his horse with his back to the class, while the others might be playing ball or another game, so this makes a big impression on him.2
"He loves riding and is really bonding with his horse now, and with Jake and some of the volunteers. They praise him, which makes him try harder, and he's getting very enthusiastic about riding and competition," Hogan noted. She related an incident that shows how important competing is to Nick.
"While trotting in a relay race, he dropped his reins. Instead of getting scared and grabbing the saddle horn, he apparently only had winning on his mind. He stood up in the stirrups and leaned forward, churning his legs back and forth, like he was running with his horse. The audience roared, and his team won a Silver Medal." Hogan chuckled. "He loves to show off his medals. I have to hide them or he'd wear them to school every day."
At a Special Olympics ceremony, the contestants walked up on a platform to receive their awards. After bending over for the judge to hang his medal around his neck, Nick began striking poses like a body builder to display it, of course encouraged by the crowd. His mother had to go up and pull him off the stand.
"Winning gives people incentive to try harder at other things, too," Hogan said. Nick used to say, 'I can't, I can't,' and would give up before even trying something new. Now he'll sign a 'thumbs-up' and say, 'Yes, I can,' and keep on trying."3
|The photo above was shot by a surveillance camera only moments after the baby fell or was thrown from the bridge. The red square indicates the position of the child's mother and young brother. There are tourists end to end on a suspension bridge over the deep canyon. One cannot conclude from the photo what actually happened; it is at too great a distance.|
When I read about your fall in the newspaper, my heart hurt. I know that the police are still trying to find out if your mother dropped you or if you were tossed over the guardrail.
But, in many ways it doesn't matter. The fact is, as soon as people knew you had Down syndrome, that changed the story. Now there was a reason for you to be thrown away: you are a baby who doesn't really matter.
There are two things you need to learn. First, you come from a group of people who have a history of being thrown away. We have been thrown out of families into institutions. We have been thrown out of schools into special classes. We have been thrown out of lives of employment into lives of poverty. And people like you and me, doctors don't really want us to be here in the first place. But we, people with disabilities, are glad you are here and welcome you to the fight.
And I, a woman with Down syndrome, want to be the first to give you the second bit of news. Yes, you come from people who have a history of being thrown away, but you also come from a group of people who have learned how to survive.
I am a self advocate, that means that I have learned to speak up for myself and speak out against injustice. I take this seriously. There are some things that I learned that I want to pass along to you, things that I wish someone had told me when I was a little girl.
So, from me to you...
Be proud of who you are. Having Down syndrome is kind of cool. I think we have beautiful eyes. Everyone tells me that we have the greatest smiles, and I think they are right. Being proud will help you in so many ways. It will insure that you 'land softly' every time someone treats you badly or calls you a name. You will hear them all, Retard, Reject, Dummy. I've heard them and really don't care what people who use those words think. They may think I'm Retarded, but I know they are prejudiced.
Don't listen to people who say you can't do things. All sorts of people told me that I couldn't learn. Guess what. I went to college, right along with typical students and I passed the same courses that they did. Oh, I had to sit up real late at night and study. I knew it was harder for me to learn, but I did it.
I can read. I can write. I can think. I can speak. There are more things that I can do than things I can't. Just remember, don't give up on yourself because someone says you can't do something. Try it. You may surprise yourself.
I really hope this was all an accident and you will know a mother's love like I have, but if not, there are lots of places where you can find love and acceptance. Find people who love you for who you are. Spend time with people who like you because of who you are. You will get tired from always having to teach people that you are a real person like everyone else. So find other people you can just have fun with.
I go to People First and other places where there are other people who have disabilities —you wouldn't believe the fun we have and the things we get up to. In my groups I've met other people with disabilities who are married, who have full-time jobs, who own their own homes, who decide their own fates. It's fun just to be part of the group. It's a relief from being special.
Discover!! Life is fun and full of surprises. You know, I never kissed a guy until I was twenty!! But I discovered I liked it.
Life is full of great things, like first kisses and chocolate. Every day I sit down and enjoy strong coffee, real strong coffee, with milk and sugar. When I treat myself, I eat seedless grapes, cold and green.
You too, have lots to look forward to. I remember my first crush --on an older man. I remember playing races with my parents. I remember swings and slides and skipping and jumping. I remember playing with a puppy and rubbing his belly. Enjoy it all. Life is full of trials, but it's also full of excitement, and fun, and green grapes and chocolate.
I read in the paper (that part still surprises people) that you are a 'miracle baby,' that maybe God caught you and carried you safely down from that bridge to the earth.
I believe, Kaya, that God gave me an extra chromosome. It's an odd gift, but it's a gift. I believe that God does love you. And, I hope you realize, so do I.
Welcome, dear baby, welcome.
In preparation for today's port of call, last night we gathered to watch one of the most famous documentaries ever made. Robert Flaherty's 1934 film Man of Aran shows the incredibly hard lives of Aran Islanders, eking out a bare existence by farming, fishing, and capturing sharks. In real life, the Aran Islanders stopped catching sharks about a century before Robert Flaherty showed up to make his movie, but as a director once said to me, "It looks great on film."
I first saw Man of Aran years ago in college, and found it deeply depressing. It's still depressing, but I forgot how boring it is. Flaherty shot the film over two years, and it seems like it's running in real time, with incidental music composed by Yanni's bi-polar grandfather. And I am not one of those guys who insists that even a grainy black and white Depression-era documentary about starving peasants has to look like a Britney Spears video. I've done my time with grainy black and white Depression-era documentaries, ladies and gentlemen.
The other problem with Man of Aran is that you can't help wondering throughout why those stubborn Aran Islanders didn't catch the next boat to anywhere else and give up on their rock. I've made enough documentaries to recognize blatant staging, too. Although I'm sure the film is true to place (if not time), Man of Aran is about as real as Ghostbusters. I was just as glad Ned opted to go to bed.
Even in 1930s black and white, however, watching Man of Aran does lead to expectations about what the real place and people will look like. This morning we had our chance. The islands were out there when we got up at 7:00, these giant slabs of limestone on the edge of the Atlantic, just off the entrance to Galway Bay. We'd already learned that there is no indigenous soil here. For centuries local farmers have used sledgehammers and crowbars to cut up the limestone and smash it into a powder. Then they mix the powder with seaweed and sand to create their own soil. From Flaherty's film, you expect the three Aran Islands to be predominantly gray. From history, you expect them to be limestoney. In fact, they're quite green, possibly because soil is now imported from England, and possibly because Flaherty shot around the green places that didn't match his "vision."
We anchored off the main island, Inishmore, near the town of Kilronan. After a bus ride around and about the island, the planned excursion was a visit to Dun Aengus, a prehistoric fort on the high cliffs. It took some convincing, but Ned agreed to come along, even though seeing Dun Aengus up close required a mile hike up a hill.
Getting him to go also took some lying. I told him he could get a burger in Kilronan if he came, although I thought the possibility that the tiny village of Kilronan would have any burger joints was about as likely as a Kilronan K-Mart next to the Man of Aran Taco Bell. But I've about had it with Ned staying on the boat.
After a Zodiac ride to the town jetty, we boarded minibuses and were soon driving past nine thousand identical rock walls separating identical sheep standing on identical little patches of green. After an hour we arrived at the backside of a very high cliff. Leading off toward the top was a rocky, muddy road, at the top of which we could dimly see ancient rock walls. "Dun Aengus," said the bus driver. "Drive on up," said Ned. "Not bloody likely," said the driver.
With about twenty other Lindbladians, we started climbing. To his credit Ned kept up, although he's never been a happy hiker. When we got to the top, it was worth the effort. Even he agreed.
Dun Aengus was built anywhere from a few hundred years BC to the ninth century, possibly by the Danes but more likely by the Fir Bolgs, a Celtic race that came to Ireland from the continent. (It sounds like the description of an Irish race horse: Dun Aengus, out of Fir Bolg, by Continental Celt.) When Oscar Wilde's dad, Sir William, visited here in 1857, he reportedly said, "I believe I now point to the stronghold prepared as the last standing place of the Fir Bolg aborigines of Ireland, to fight their last battle if driven to the western surge..." Which is to say that if forced west from Dun Aengus, that first step is three hundred feet straight down off a spectacular cliff into the sea.
The fort consists of three semicircular stone walls, one of them thirteen feet wide and eighteen feet high, creating an almost square enclosure that is a hundred and fifty feet on each side. Like all children, Ned headed immediately for the edge of the cliff. My daddy-knee jerked, imagining he was about to become the first person since some careless Fir Bolg to take the short route to the bay. (I'm sure Oscar Wilde's dad felt the same way when little Oscar immediately headed for the brink.) But instead Ned stopped ten feet from the edge and sat in the short grass. Forty-five minutes later he was still sitting there, surrounded by the ancient rock walls, staring out at the sea and talking quietly to himself as he so often does. He had turned into Ned the Historian, oddly at home in this strange and miraculous place. He had no need to walk around, touch the rocks, listen to the lecture, or pose for snapshots on the edge of the cliff. He was feeling the place within him. He may actually have been mentally relishing the promised cheeseburger to come, but I don't think so.
I should say something here about Ned's conversation with himself. It started when he was a toddler, and may never end. When he was very young we thought it was gibberish, baby talk for a very old baby. We assumed he was mouthing meaningless syllables just to hear his own voice, almost as a way to keep himself company.
One Sunday morning, however, I was reading the newspaper and Ned was sitting on the floor nearby, babbling away. I suddenly heard him say, clearly, distinctly, and with feeling, "You're a very bad man. No, I'm a very good man. I'm just a very bad wizard." It's from the last Emerald City scene in the Wizard of Oz, when Dorothy first realizes the Wizard is a fraud and won't be able to get her magically back to Kansas, or do any of the things he's promised her friends. It's the moment she realizes that all the bad people in the world don't have green skin, magical powers, and armies of flying monkeys. Some of them look just like the man down the road, and their unintentional evil is confined to trying to be something they can never be. It's that instant when Dorothy grows up a lot, and adults stop being all-knowing and powerful in her life. So it may be the most important exchange in the entire film. Did Ned, even at five years old, realize the importance of the moment and so give it a little extra push? I don't know. But as I listened carefully that morning, I realized he wasn't talking gibberish at all. He was reciting the Wizard of Oz, all of it.
When he got to "Oh, Auntie Em, there's no place like home!" he started it again. I knew he'd watched the home video of the film at least fifty times, because half of those times I watched it with him. But it never occurred to me that he had memorized all of it, or was even capable of doing such a thing. By listening to him during the next few days, I learned he had also memorized the Disney Snow White, the Snow White and Puss In Boots I wrote for the Seattle Children's Theatre and subsequently videotaped, and three or four other shows in his collection of tapes. It occurred to me that Ned had never been just babbling. He was always reciting stories that he liked to hear.
As he grew older, the memorized pieces were first supplemented and then replaced by his own tales, inter-weavings of the events and characters he has always found interesting, with plots taken from books and films he likes. In Ned's imagination, I suspect Seattle pioneer Arthur Denny and Titanic owner J. Bruce Ismay have fought dinosaurs on the slopes of Mt. St. Helens to the music of Dick Dale and the Del-Tones. But I don't really know for sure. Ned's private conversation is just that-private. Approach him and it usually stops.
Cathy and I are so accustomed to it by now that we hardly notice, but occasionally I'll see strangers looking at Ned when he's off in a corner, slowly rocking back and forth and talking to himself. A therapist once told us this was classic autistic behavior. He was surprised to see Ned doing it. "Usually autistics and people with Down syndrome have exactly opposite personalities," he said. He told us not to worry about it, and we never have. Some outsiders, however, seem to enjoy worrying about it, and stare at the poor little retarded boy talking to himself like he's playing with matches and why don't I do something about it? They don't know the secret, and I feel no obligation to explain that he's telling himself stories and not just babbling. After all, I made the same mistaken assumption myself. I especially feel no need to tell Ned to stop, no matter where we are. That endless monologue is so much a part of him, it would be like asking John Muir to give up the Sierras, or Bonnie Raitt to knock off all that singing. It's a manifestation of his memory and his imagination, two of the real joys of Ned.
Halfway back down the hill from Dun Aengus, Ned produced an object from his pocket. History will never know for sure who built the massive stone walls of Dun Aengus, but I know for sure who made them infinitesimally less massive.
"Ned, where did you get that rock?"
"Please tell me you didn't take the rock from the walls."
"There were lots of them."
"You don't understand. I don't want you to tell me you took the rock from the walls, even though I know where you got the rock. I don't want you to tell anybody that."
"Taking a rock from the walls is probably a felony in Ireland. If everybody took a rock from the walls, Dun Aengus would soon be a place on top of a cliff where there used to be a wall, and our bus driver wouldn't have any place to take people except the Taco Bell. So you picked up the rock from the ground. And you picked it up down here, not up there. Okay?"
"Especially don't tell the bus driver. Or Tom."
And he didn't. The bus dropped us back in Kilronan, where we had an hour to kill before the Zodiacs headed for the ship. While I looked at genuine Aran Island wool sweaters in the town shop, Ned strolled around outside. He found me a few minutes later, smiling happily. There was a restaurant in the lobby of the small hotel next door. It was open, and cheeseburgers were on the menu. His stroll of discovery had resulted in an important and unexpected reward.
I'll remember two things from this day for a long time: Ned sitting near the edge of a cliff, becoming for just a few minutes a Fir Bolg (or perhaps a Dane); Ned, just as alone, just as intrepid, sitting at a table in an otherwise empty Inishmore hotel dining room, eating a cheeseburger and fries, and looking out at the very spot in the sea where Robert Flaherty staged the shark hunt.
It's been a good day.