June 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. With the permission of Woobine House we will be excerpting, in this and subsequent issues, Adventures in the Mainstream, a lively and insightful account, allowing readers to enjoys Ned's strengths and foibles just as his father does. This personal chronicle also gives us a better understanding of what's involved-for parent and child-in a young man's journey from adolescence towards adulthood and greater independence. See: http://www.woodbinehouse.com/synopsis. asp_Q_product_id_E_1-890627-30-5_A_.asp. September 26th. Puttin' for Down Syndrome 1st Annual Charity Golf Tournament and Silent Auction at Clinton Hills Golf Club in Swansea, Illinois. The golf tournament will be a four man scramble with a shot gun start, beginning at 12 p.m. Following golf, we will have a dinner, prizes, and award the silent auction winners. The cost is $75 per player. All monies raised will be donated to the new Down Syndrome Clinic at St. Louis Children's Hospital. To register a golf team or to donate an item or money contact Tim Nienhaus at 236-1850.
From the event organizer:
Personally, I have a son, Alex, who was born with Down syndrome on December 23, 2003. Since then, I have found that there is a great need to coordinate the care and development of these special children and adults. Alex has given my wife and I many great joys but also numerous challenges in not only medical care, but also physical, occupational, developmental, and speech therapy. The new Down Syndrome Clinic has not only developed a program to coordinate all of Alex's care, but they continually work toward improving his future in the research they do.
Faith in Action® 222 Goethe Avenue, Collinsville, IL 62234, 344-8080. An ecumenical ministry of the Collinsville Area Ministerial Association.
What Services Are Offered?
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 SSI, a means-tested Social Security benefit. This month, we look at SSDI.
SSDI stands for Social Security Disability Insurance. Unlike SSI, SSDI is not means-tested. SSDI is an entitlement. You are entitled to receive SSDI if you have a disability and if you have worked and paid into the social security system or if you are the dependent adult child of someone who paid into the system. We will discuss dependant adult child eligibility in a subsequent issue. This discussion focuses on eligibility based on your own work record.
To receive SSDI, you must:
You have DIB status if
A covered quarter is one in which you have earned at least $250.* If you are uncertain about your status, check with your local SSA office.
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 an 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.*
Not necessarily. SGA is defined as employment that earns you at least $810/month, while covered quarters counting towards DIB status only require earnings of $250/quarter. Also, something in your situation or your employment situation may have changed such that you cannot earn at your previous level. For example, the condition of an existing impairment may worsen or you might relocate from a city where supported employment is readily available to one where it is scarce.
The income limits are the same. In order to be eligible for either SSI or SSDI, you must be unable to engage in substantial gainful activity; that is, your monthly income, after subtracting disability-related work expenses and the cost of any subsidies such as job-coaching, may not exceed $810 (or $1,350 if you are blind.)
However, unlike SSI, SSDI has no asset test. You may have any amount of assets in your own name and still qualify to receive SSDI based on what your having worked and paid into the system.
Yes. If you previously worked enough covered quarters to have DIB status, but are now unable to work at a level that generates more than $810/month of countable income and if you do not have more than $2000 worth of countable assets in your own name, you are eligible for both SSI and SSDI.
In some cases, yes. If the total of your SSDI payment and any other countable income (earned or unearned) is lower than the maximum monthly SSI grant, you will receive a reduced SSI payment. If your SSDI payment plus other income is higher, you will receive the SSDI only. To calculate countable income for your particular situation, please contact an SSA benefits planner. Contact information can be found in the sidebar on the first page of this newsletter. [Social Security Admin. http://www.ssa.gov]
The standard waiting period is 5 months. You are exempt if you have been eligible for SSDI before and your eligibility ended less than 5 years ago.**Social Security Administration Programs Operation Manual System. http://policy.ssa.gov/poms.nsf/aboutpoms
When 12-year-old Allie Thomas heard that June Rae Wood, author of "The Man Who Loved Clowns," would soon be visiting the 5th & 6th Grade Center, she quickly read the book.
It was the story of a man named Punky with Down's syndrome.
Thomas didn't realize the book was based Wood's own life and that of her late brother, Richard. What Thomas didn't expect was the impression the author's presentation would make on her and her friends.
"It wasn't what I expected at all. I had no idea the characters in the book were related to her," Thomas said. "She really taught us to not make fun of people with Down's syndrome."
Wood, who grew up in Versailles, spent two days with Poplar Bluff students, speaking about her books and her life. She also held writing workshops and autographed copies of her books.
But it was Wood's presentation of the story behind the stories (how the characters in her books are patterned after her family) that brought tears to students' and teachers' eyes and compassion into their hearts.
"You could have heard a pin drop," said teacher Jan Desgranges, after Wood's presentation. "I've never known the kids to listen so intently. She not only reached their hearts, but she touched their hearts."
"I don't think anybody that listened to her will make fun of handicapped people. From now on, they will look at them in a different light," Desgranges said.
Wood showed pictures of her brother Richard, who died several years ago from heart complications at the age of 36.
"Even though Richard was a man in years, he was a child in his mind," Wood said. "It never bothered Richard if people made fun of him. But it bothered my sister and me."
Wood told of Richard's eccentric behavior, giving students a bit of insight into the personality and mentality of a person with Down's syndrome. She held up a wicker basket filled with 13 pounds of broken crayons and explained how Richard never used them to color pictures. Instead, he would peal off the paper wrappers, break them into small pieces, and entertain himself for hours by rolling the pieces across the table.
Wood told students how her brother wouldn't let anyone touch his head except for her. And that meant when she went away to college, she had to come home every weekend to wash her brother's hair. Otherwise, Richard would have never had a clean head.
"He didn't understand the concept of money so we had to watch him closely in the store. If he saw something he liked, he would take it and maybe leave a of couple broken crayons in it's place as a trade," she said.
"For 36 years, we catered to him. When he was taken from us, everyone in my family had a huge hole in their heart. My way of dealing with it was writing about it."
Allie Patillo, 12, said she has read "The Man Who Loved Clowns" and is currently reading another of Wood's books, "Turtle on a Fence Post."
"It was very emotional to hear her speak. I thought it was really cool that the characters were from her family and that she used her family to explain about handicapped people."
Jacob Taylor, 12, said he's read some of "The Man Who Loved Clowns." After hearing Wood's story, Taylor said he is eager to finish it.
"I know a person who has Down's syndrome, and I know they don't live very long," Taylor said. "It's kind of sad. He is around 33 but he acts like a kid. And that is OK because now I know why. You've got to realize they don't know they are different."
Brooke Davis, 11, is also currently reading the book and was especially moved by Wood's presentation.
"It's one of the best books I have ever read," Davis said. "'Punky' has definitely touched my heart. So has Richard."
Wood's other books include "When Pigs Fly," "About Face," and "Turtle on a Fence Post."My Gift: The Magic of a Special Child by Daniella Vance. Photograph and excerpts reprinted with the special permission of the author. Ordering instructions at:
|Daniella and Mathew|
I love you because you look familiar.Adventures in the Mainstream by Greg Palmer. Excerpt reprinted with the permission of the author and Sarah Strickler, Woodbine House. Friday, June 28, 2002, 10 p.m.
You are fair like us.
You share your sister's blond hair,
Your sister's smile - my smile.
You have your father's long eyelashes,
Your father's blue eyes... I love you because you look different.
You were born with eyes that slant upwards,
Small folds of skin at the corner of each almond-shaped eye,
And light spots on each iris that remind me of the sea's surf and whitecaps on water.
Your differences fill a page,
Your similarities a book,
The universe... I love you because you have an extra chromosome in every cell of your body.
You've increased our chances of having another child with a chromosomal abnormality.
You've introduced us to a foreign language - the jargon of Trisomy 21,
To a number of specialists - audiologists - ophthalmologists - cardiologists - speech language pathologists - occupational therapists and physiotherapists,
To a world of support meetings and blanket donations,
To a population that is omnipresent and invisible.
You've made us a part of a courageous community. I love you because I've read your future and fortune in the single simian crease on the palm of your left hand.
I love you because you have Down syndrome...
I love you because you provoke thought.
You are challenged,
You are a challenge,
And you challenge without making a sound or lifting a finger - with your eyes alone you make people think.
With your eyes alone you teach the truth about life and love - this is the awesome gift you give to me and the gift you give to the world.
You challenge people's preconceptions and help them build new ones.
You teach that beauty cannot always be seen and must be discovered.
You teach people not to prejudge,
Force them to look past appearances,
Explore beyond the tangible,
See the soul... I love you because you are my responsibility -you need me, but I need you more.
I will teach you,
But you have taught me more.
I will pay your way,
But I can never repay you.
I will pave a path for you,
Knowing that you paved mine first.
You are my ball and chain,
But you free me from my chains.
You are my cross to bear - you are heavy,
But you make me light - lead me to spiritual freedom.
You ground me,
And you give me wings to fly.
You are a paradox;
You make me a paradoxer - make me contradict myself and speak the truth... I love you because you are special.
You are ... precious,
Like jadeite - a jewel.
You are like nephrite - a stone from Heaven - my stone of hope,
Already carved by His hand,
To be polished by my own.
It is my job to help your beauty shine through so that others may see it.
It is my obligation to help others understand and accept you.
You possess angelic qualities,
But you are not an angel.
You are human,
But your presence is divine.
And it liberates.
You are invaluable.
The grand expedition is over, except for pier-side farewells and getting home from Scotland. Right now we're traveling south aboard the Endeavour toward the Moray Firth and Invergordon, the Firth-port that serves Inverness, for an arrival at 8:00 tomorrow morning. I think Ned has been emotionally ready to go home since the concert in the lounge, although there have certainly been some moments of interest in the last two days.
We discovered there actually are Shetland ponies in the Shetland Islands. It's not like French fries in France, nor are all the ponies shipped in from Taiwan or New Jersey industrial parks. That's reassuring. You don't want to get too close to the ponies, however. Like all horses, the front end bites and the back end kicks, but you tend to forget that because they are so much cuter than your average nag. Then you get bitten and/or kicked and you say let the Taiwanese have them.
From the way he's been talking in the last few days, Ned's piano concert will become the high point of the entire trip, as far as he's concerned. It went well and I had nothing to do with it from start to finish. In fact, through his own efforts and the kindness of strangers, he did something I originally told him he couldn't do, and that made it all the sweeter for him. But for me, just as memorable as those ten minutes at the ivories was dinner last night.
Our table included Crystal and Gale, the aunt and niece from Texas; a staff member in his mid-twenties who is clearly smitten with Crystal; and Frank King, the British bird expert who now lives in Ireland—an erudite man in his sixties. The talk turned to his various activities, and Frank mentioned that back home he does a weekly radio program that has nothing to do with birds. He reads poetry. He recited a bit of Auden for us. The young staff member said he knew a poem too, and then recited a limerick that was both off-color and not very good.
I turned to Ned, because I knew what was about to happen. A few years ago, when he was mainstreamed in a sophomore English class, the teacher gave a last-minute assignment one Friday afternoon. "Next week," she said, "everyone has to recite a poem to the rest of the class. So start memorizing. And try to find a poem that means something to you."
Ned immediately raised his hand. She was about to tell him that he didn't have to do the assignment if he didn't want to, because she assumed that was what he wanted to ask. But before she could let him off the hook, Ned said, "I'm ready now." The teacher told him to go ahead. She made a second incorrect assumption—that the class was about to hear something of the "roses are red, violets are blue" variety. She sent a note home with Ned that afternoon to tell us what happened. And it's what happened last night at dinner.
In class three years ago, and again last night, Ned recited, word perfect and with ease and passion, The Wolf, written around the turn of the century by Georgia Roberts Durston:
When the pale moon hides and the wild wind wails,
and over the tree-tops the nighthawk sails,
the gray wolf sits on the world's far rim,
And howls; and it seems to comfort him.
The wolf is a lonely soul, you see,
No beast in the wood, nor bird in the tree,
But shuns his path.
In the windy gloom
they give him plenty, and plenty of room.
So he sits with his long lean face to the sky
Watching the ragged clouds go by.
There in the night, alone, apart,
Singing the song of his lone, wild heart.
Far away, on the world's dark rim
He howls, and it seems to comfort him.
It's a wonderful poem and he's loved it for years. For me it's always been a little bit about him. At least I hope it is. In the future, when his parents are gone and society is giving him plenty of room, his path may be shunned. He could be a lonely soul, but he will always be comforted by singing the songs of his lone, wild heart.
Our tablemates on the Endeavour were impressed, and the limerick reciter was a little embarrassed. Ned recited two more poems last night: Dr. Seuss's funny Too Many Daves, which always reduces him to hysterics, and perhaps his favorite poem of all, Carl Sandburg's Buffalo Dusk:
The buffaloes are gone.
And those who saw the buffaloes are gone.
Those who saw the buffaloes by the thousands and how they pawed the prairie sod into dust with their hoofs, their great heads down pawing on in a great pageant of dusk.
Those who saw the buffaloes are gone.
And the buffaloes are gone.
Ned's concert was a gimmick, in a way. There are certainly far better pianists on the Endeavour, including an older woman who comes up to the lounge every morning before breakfast and plays Bach beautifully, usually for an audience of one—me. (Tom Ritchie thinks she's a retired concert artist.) And realistically, I think if Ned didn't have Down syndrome but was just a guy on the boat, he wouldn't have been asked to play.
Poetry at dinner was no gimmick. Ned wasn't showing off or trying to be the center of attention. He was holding his own in an adult conversation, getting into the flow of an adult world, and going with it far better than the limerick guy. His recitations were sincere and heartfelt, and like all good poetry reading, he revealed something about himself by his choice of poems and the way he spoke them. I don't think I've ever been prouder of him. And I was especially grateful to Frank King for his reaction. It didn't have even a hint of "Wow, the retarded kid has a good memory!" Afterwards he and Ned chatted like two men who share a love for words and their power to move the human heart. And if for Frank that means Auden, and for Ned that means Seuss, Durston, and Sandburg, it doesn't really make any difference.
This poetry event gives me the opportunity to boast about Cathy's and my parenting skills, and I'm going to seize the opportunity. We started reading to Ira every evening when he was just a few weeks old, long before he understood what he was hearing. In truth, this was no more a conscious parenting decision on our part than feeding him was a conscious decision. It was simply something we knew we should do and very much wanted to do for as long as our children would allow us to. She and I are readers ourselves, especially Cathy, who has a Ph.C. in English (which means she's done everything for a doctorate except write the dissertation). Thirty-eight years ago she took a paperback copy of Jude the Obscure on our first date, just in case things got dull. (I have never let her forget this.) In our house, as in our parents' houses, there have always been books. Some visitors to Chez Palmer go wide-eyed if they get a chance to see how many books there are. Books line the walls of Cathy's office, my office, our bedroom, our basement, and every available space in between. We could turn the place into a small branch library tomorrow and not get many complaints about holes in the collection, especially in the areas of past and contemporary novels, show-biz related works, reference, humor, travel, and art books. There's even some science, although the engineering and mathematics shelves will always have a lot of space.
When Ira and then Ned arrived, the twentieth-century English novels, John Updike tomes, and biographies of obscure comedians moved over to make room for hundreds of books for kids. We started with the basics like Good Night Moon, Maurice Sendak's wonderful stuff, and a series of books I still read to myself now and then: James Marshall's saga of two hippopotamuses named George and Martha (Tons O' Fun).
The children's book collection got ever more sophisticated as Ira and Ned grew up. In the summer before his ninth grade year, when Ira's communication with his parents had devolved into the traditional monosyllabic grunts of most teenage boys, Cathy read J.R.R. Tolkein's entire Ring cycle to him. It was the end of their tandem literary journey, one that had begun a decade and a half before with The Very Hungry Caterpillar. From then on, Ira read his own books, to himself. But he did keep reading, and he and his mother did have that time together they would not otherwise have shared in the tempestuous early teen years. There's no question Ira is a smarter, more sophisticated, better prepared man now because of the hundreds of books he heard from us. All of the above—establishment of the joy of reading, extended parental bonding, smarter kid—are reasons to read to your children.
Ned has had a similar literary experience, only it didn't end when he was fifteen; he didn't want it to and neither did his parents. We've had to spend more time at each intellectual level with Ned than we did with Ira, but we still hit the same spots. He and I even tried to read Tolkein's Ring cycle. We gave up only because Dad kept getting confused by all those needlessly similar, cutesy-pie names, just as he did in high school forty years ago.
Ned's slower pace meant we spent more time on books I loved to read (Tons O' Fun) and, unfortunately, more time on books I loathed, like the appalling Curious George books. (I'm sorry, George-devotees. The first and most famous George stories are okay, even if the Man in the Yellow Hat always goes away at the wrong time and George always screws up the moment he does and then always redeems himself by doing something right. But the quick-and-dirty sequels that grew out of the cartoon series are terrible.)
A few years later, we became equally mired in the uni-plotted Hardy Boys books. Ned and Cathy are still following plucky Frank and Joe and their corpulent friend Chet Morton down mysterious paths, but I couldn't take it any more. In between the dull books, or the ones we found dull, Ned has also been receptive to better works, and those works have become far more intellectually challenging as time has passed. When I was a kid, my mother and I read together everything the late Robert Lawson wrote or illustrated, wonderful books like Rabbit Hill, Mr. Twigg's Mistake, Captain Kidd's Cat, Ben and Me, The Great Wheel, and the perfectly illustrated The Story of Ferdinand by Munro Leaf. It was one of the true joys of being a parent to be able to read them myself to Ned a few years ago, and find him just as enchanted by Lawson's great heart and great eye. It was like introducing him to some very old but dearly remembered friends. Between the inevitable Hardys, Ned and Cathy have recently been reading biographies of his heroes—Martin Luther King, Jr., Woody Guthrie, Mahalia Jackson—and not all books written for kids, either.
Each night, after Cathy or I have read a chapter from the current book, Ned does his bathroom work and gets into bed. Then we trade off and the other parent reads him a few poems. I don't remember how this tradition started, but it's clear that Ned enjoys the poetry every bit as much as the story that precedes it. It could be the songwriter in him. He's a lyricist, after all, and so a poet himself. And though it is conjecture, I think one of the reasons Ned is so verbal is because of the reading we've done, both the prose and the poetry. It has been and continues to be a very important part of our lives together. Some of his favorite poems we've read dozens of times. But until that sophomore English class two years ago, I never realized he has memorized the ones he really likes.
Tonight's last meal on board was just as satisfying even without the poetry. As at the Captain's Dinner ten days ago, some guests received invitations to dine at specific tables with officers and crew. They were the guests who hadn't gotten invitations the first time. Because Ned and I had our evening with the Big Swede engineer, this time we were at a non-hosted, generic table. We were joined by Tom Ritchie and the ship's doctor, Gail Wagner. (From spending the last week and a half with him, I'd bet Tom doesn't host tables at these events because the whole practice is just a little too "Holland America" for him.) I think they sought us out because Tom wanted to spend his last meal on board with Ned.
We all talked about the things we had seen in the past two weeks, and what our plans were for the future. There wasn't anything special about this conversation, which is why it was special. It was a group of people who respect and like each other, talking of this and that. Ned was very much part of it, and was treated throughout like just another person at the table. Seeing if that would ever happen was one reason why we did this.
Tomorrow looks like it will be a very long day. We land at Invergordon, take a bus to a hotel in Inverness, try to get on a tour to Loch Ness in the five hours we have before we go to the Inverness airport, fly to Luton, and get ourselves and our bags to a Luton airport hotel. Then Sunday we get a bus to Heathrow, and British Air takes us home.