March 2010 Issue

The Riverbend Down Syndrome Association is a 501(c)(3) non-profit organization and can receive tax deductible contributions. Our Employer Identification Number is: 14-1982424.

Our next parent support meeting is on March 22^nd, 6:30 p.m. at LeClaire Christian Church, 1914 Esic Drive, Edwardsville, IL 62025. Contact: Sara and Tammy at: support@riverbendds.org.
Down Syndrome International has earmarked World Down Syndrome Day as March 21 (3/21). The annual observance aims to promote awareness and understanding and in support and recognition of the dignity, rights and well being of persons with Down syndrome.
In this issue the Father's Journal is written by E. Duff Wrobbel and we excerpt passages from the book The Message Glorious by Doris Kemp and Barbara Radmacher – synopsis: "What's the matter, Mom, aren't His promises good enough for you?" Doris Kemp was asked this question by her terminally ill 12-year-old son, David, as she was attempting to reassure him of God's love and faithfulness. David lost his valiant battle with cancer over forty years ago, yet he left a message of hope and faith that carries Doris' family forward even today. David's brother, Scott, born with Down syndrome months before David died, continues to inspire family and friends with his own special joy, wisdom, and unconditional joy.
The Message Glorious is available online at www.amazon.com.

Local Events

Saturday, March 20. 4^th Annual Scotch Doubles Down Syndrome Bowling Tournament at Tri County Bowl in Jerseyville. All proceeds go to the Riverbend Down Syndrome Support Group. Please support this event; there will be two sessions, 4:00 p.m. and 7:00 p.m.

Lane Sponsors $100.00 (Companies name on a banner)
Donated items to be raffled off or for Silent Auction
Donated items to be handed out as door prizes at both sessions.

1st - $100; 2nd - $75; 3rd - $50. Door Prizes will be awarded, 50/50, Silent Auction If you have any questions or would like to help, please contact Joy Stemmler at stemmler3@frontiernet.net.

Down Syndrome Articles

The Dakar Framework (World Education Forum, 2002) committed nations to education for all. The Forum spoke of an 'education geared to tapping each individual's talents and potential, and developing learner's personalities, so that they can improve their lives and transform their societies'. (p.1) Clearly there is a huge gap between aspiration and need on one hand and legislation, policy and funding on the other. This brief paper comments on current trends in the provision of lifelong education for people with an intellectual disability, with particular emphasis on the needs of young people transitioning from school to work. The influence on schools and educational institutions of the current social, political and economic situation in Australia is reviewed and the implications for families of adults with disabilities are explored. The paper briefly reviews features of recent legislation in USA and Australia with particular reference to the role of educational institutions in providing not only an inclusive education but also a meaningful one for adults with an intellectual disability.
My aim in this brief paper is to provide a general overview and introduction to the speakers who follow. Last month at the Armidale Challenge Foundation's 50^th anniversary celebrations I had the privilege of having dinner with two young adults with Down syndrome. My colleagues and I had worked with these two people from the time they were about six weeks of age. Both, as adults, were now active members of the community; both had jobs and both seemed happy. Seeing them there sure made me happy as both had been participants in early intervention services in which I was involved.

moonlight is the newsletter of the Riverbend Down Syndrome Association.

Editor: Victor Bishop
Web Site: http://www.riverbendds.org/
Twitter: @riverbendds

However, these two fine young people were more the product of ongoing education than simply early education. As important as early education can be, the fact is that what is most important is ensuring ongoing intervention, i.e. the opportunity for lifelong learning.
Peter Mittler in a keynote to the 19th National Conference of AASE in 1995 wrote: "In the field of intellectual disabilities, we need to define education in very broad terms as anything which systematically promotes learning and development. Defined in this way, education is a lifelong process which neither begins nor ends with schooling. Similarly, it is carried out by many people who are not teachers. Parents are at the heart of this process. The years spent at school are clearly of vital importance but they are only one element of the educational process." (p.5)
I will just make a couple of observations. First, the vital role of parents will become even more important in a social and economic climate characterised by concepts of deregulation, competition, choice, user pays and mutual obligation. I fear my recent experiences with hospitals may apply to educational institutions, i.e. if you want to ensure your loved ones receive an adequate service, then you have to be there, speak up, look after their interests, and as nicely as you can, be 'in the face' of those who provide the service. There is an assumption that all consumers can speak up and look after their own interests - but we know that not everyone has the skills or capacity to do that.
Second, every one of us learns from experience and from exposure to challenging and interesting situations, not just from good teachers. As Professor Sue Buckley, an expert on Down syndrome and the mother of a young woman with Down syndrome writes: "There is no evidence to support the view that children with Down syndrome reach some ceiling in learning by adolescence and do not go beyond it. Studies following children over time have disproved this myth. People with Down syndrome continue to develop reading and writing, speech and language, independence and social skills into adult life. Indeed the author's daughter with Down syndrome, Roberta, made quite dramatic progress between the ages of 22 and 31 years thanks to a move to independent supported living and to falling in love."
Similarly, many of us can report, as did a mother to me just a few weeks ago, that their adult children with a disability often 'take off' in their learning, including in their academic learning, after they leave compulsory education. This raises the issue of educational opportunity for adults, an issue taken up in detail by my colleagues in the following papers. However, I just make the following general observations.
When educational programs are available for school leavers with a disability or those about to leave school, they often focus solely on employment. In today's climate that is not an inappropriate focus, but it is limited, if that is all there is. I believe we need to have precisely the same opportunities for everyone, and in lifelong learning, that does not necessarily mean only the skills to get and keep your first job.
The Disability Standards for Education (Commonwealth of Australia, 2004) that pass into law this month will give individuals with disabilities and their supporters considerable leverage in getting not just an education but an appropriate education - if they are willing to use the Standards. As we all know, there are personal risks associated with 'taking on' educational institutions and there can be emotional and financial consequences of going to court. However, I think the Standards can be used more cleverly and with greater finesse. Think of it as your 'educating the education providers about how they can stay out of court'.
Developments in the compulsory education sector will have a major impact on lifelong learning for people with Down syndrome. With a greater proportion of students with a disability attending their local school, mainstream teachers need to change the way they teach. I am heartened by much of what I see around Australia as I undertake research on students with disabilities in the mainstream. Sure there are teachers who find inclusion is too hard for them; sure there is an over reliance on teaching assistants; and yes, teachers are right in saying there are not enough resources, enough professional development and certainly not enough time. However, inclusion is happening and, remembering my earlier point about 'you don't just learn from teachers but from opportunities and involvement', it is clear that the students attending regular schools are going to graduate with a different set of skills and aspirations for their future because of their mainstream experiences. It is encouraging too, that some teachers no longer see their class in terms of disabled and non-disabled, or even in terms of groups of mixed ability, but as individual students with individual needs.
One of the really complex issues in compulsory education at the moment is curriculum. There is a preference in some states to use and adapt the 'standard' curriculum and some teachers are making this strategy work for students with disabilities. However, it is a tricky and demanding task to ensure that the general curriculum is relevant, that it responds appropriately to individual needs, and that it links with the child's IEP.
In the USA the mandated changes to transition education services for students with disabilities under the IDEA legislation cut in at age 14. Educators and legislators have realised that there needs to be greater attention to self-advocacy skills, self-determination, job-seeking skills and life long learning because in a world where governments say they cannot provide it all, individuals (and their supporters) will be thrown more onto their own resources. In an address to the national ASSID Conference on 'Education, Work, Career and Security' last year I made the point that 'the subtext in the discussion about contemporary curriculum goals for students with intellectual and developmental disabilities is that school students with disabilities had better learn the skills, find the supports and develop the networks that will assist them to have a good life without extensive government support once they have left school'. I still believe that's the case.
Much is talked about adaptation - and again - it is a good thing to do and many teachers are skilful and creative at adapting the curriculum. However, as Westwood (2003) observes, adaptation can also mean a watered down curriculum and in a real sense, discrimination through denial of opportunity. As one student in the Ash et al research on students with disability in further education in England (1997) commented about her adapted curriculum: "We didn't learn much (in the special school). We used to do little kiddies' stuff. We didn't do hard work but at college we do hard work and then we learn more."
In conclusion, the opportunity to participate in lifelong education is regarded as an essential human right. But as we well know, rights are not always honoured. Even in developed countries like Australia we see daily examples of rights being denied or ignored, even at the very time we are applauding ourselves for honouring them. Discussion about rights reminds me of what a research participant with an intellectual disability said to me in answer to one of my questions about rights. She said: "You can't eat and wear rights can you Tony?" I think she was alluding to the fact that you can assert your rights for all your worth, but if society and governments don't honour them, then what's the point?
There are some competing themes in Australian society today. While we believe we espouse a 'fair go', mateship and inclusion, we are also exhorted to fend more for ourselves, to get the best deal in a competitive environment, to pursue our choices and to be 'aspirational'. We are frequently reminded of our mutual obligations and given assurances that there are some basic safety nets, (subtext for 'We'll help if you're desperate but don't expect too much from government!) In a society like this it is essential that we use whatever leverage we have to ensure that people with disability receive the support to access the services they need. In relation to their learning opportunities beyond compulsory schooling we are lucky to have the new Disability Standards for Education. These Standards have the force of law and they outlaw discrimination in education on the grounds of disability. Parents and supporters would be well advised to study the Standards and to use them to facilitate a better lifelong learning deal for their sons and daughters with a disability.

References

Ash, A., Bellew, M., Davies, Newman, T. & Richardson, L. (1997). Everybody in? The experience of disabled students in further education. Disability and Society, 12 (4), 605-621.

Buckley, S. Living with Down syndrome. (1996-2005). Down Syndrome Educational Trust. Retrieved 22 August 2005 from http://www.down-syndrome.info/library/dsii/01/01/DSii-01-01-EN-GB.htm

Commonwealth of Australia (2004). Disability standards for education. [Online]. Available: http://www.ag.gov.au/DSFE

World Education Forum. (2000). Dakar Framework for Action. Dakar, Senegal. Retrieved 22 August 2005 from http://www.unesco.org/education/efa/ed_for_all/dakfram_eng.shtml

Mittler, P. (1995). Education for all or for some? International principles and practice. Australasian Journal of Special Education, 19(2), 5 - 15.

Shaddock, A.J. (2004). Education, work, career and security. National Conference of the Australian Society for the Study of Intellectual Disability, Adelaide (keynote address). Available: http://www.canberra.edu.au/schools/ecs/inclusion/papers/shaddock2004b

Westwood, P. (2003). Commonsense methods for children with special educational needs: Strategies for the regular classroom (4th ed.) London & New York: Routledge Falmer.

Smiles, songs for a granddaughter who is just right by Beverly Beckham. E-mail: bevbeckham@aol.com. The Boston Globe. March 1, 2009. Reprinted with the permission of the author. © Copyright 2009 Globe Newspaper Company.

Five hours in a car. It's a long time for a 5-year-old to be confined. But Lucy never complained. Not a tear. Not a tantrum. Not even a pout.

My granddaughter was happy, listening to Rodgers and Hammerstein's "Cinderella," (sung by Julie Andrews; the child has good taste) and singing along. She ate chicken fingers in a nice restaurant overlooking the water, then she was back in her car seat, singing again.

She and her mother and I were on our way home from New York City. We had taken her to see her 19-month-old cousin.

We had been to parks and museums, bookstores, and toy stores. We had walked and shopped and eaten and played. And even when Lucy caught a cold and was all stuffy and sneezy on the day we had tickets to "Mary Poppins" she remained a trouper.

A runny nose didn't take away her smile.

I was thinking about this, about what a great kid she is, when I walked into my house and read the cover of the Boston Globe Magazine, which had come while I was away: "Pregnancy and Down syndrome; the agonizing decisions." Lucy has Down syndrome, so I sat and read it.

I wish I hadn't. Its negativity made me question reality. Did I invent this perfect week with my grandchild? Lucy's smiles and her songs. Lucy reading books and running through Central Park, raising her glass of milk and saying "cheers." Lucy remembering to say "please" and "thank you" to every person who held a door or brought her food or handed her a ticket.

The article was about two families who were told that their unborn babies had a 1-in-6 chance of being born with Down syndrome. One couple continued the pregnancy, the other aborted. As background, the author, Dr. Adam Wolfberg, wrote that Down syndrome "results in mental retardation and often a host of medical problems." That prospective parents use early prenatal testing to identify a baby with the syndrome "so that they can prepare to raise a child who will have profound medical, cognitive, and behavioral challenges." And that a determination of Down syndrome is "like a lottery no one wants to win."

The words Wolfberg chose to use - profound, a host of medical problems, a lottery no one wants to win - stung not just because they make sweeping generalizations left over from a time when children with Down syndrome were excluded from the community, institutionalized, and not given the opportunity to learn and to thrive. But because, before Lucy, I would have believed them.

You see things one way when you're on the outside looking in. You see all the can'ts and all the problems. But when you're on the inside looking out?

All you see is a child.

Our family had hoped for a baby without extra challenges. Doesn't everyone? Isn't this why we say, "I don't care if it's a boy or a girl, as long as the baby is healthy." When Lucy was born, she wasn't healthy. She had holes in her heart. She needed surgery. And she had Down syndrome.

Negative words decimated us. In the beginning they're all you hear. You play them over and over in your head and you worry and watch and wait. And you miss so much that is good because you are a wreck anticipating disaster all the time.

And then you stop worrying. You stop projecting and imagining and you look at this child in your arms, whom the world deems inferior, and you think how wrong the world is. And how perfectly right she is.

Dr. Jose Florez runs a clinic at Massachusetts General Hospital for adults and adolescents with Down syndrome. He speaks from experience - his sister has Down syndrome. In a presentation he gave in late January, he presented a list of attributes that people with Down syndrome share: Happy disposition. Big heart. Plain goodness. Kindness. Perseverance. Loyalty. Fun-loving. Musical talent. Contentment. Why aren't these words part of genetic counseling?

Lucy listens as Julie Andrews sings. "Impossible for a plain yellow pumpkin to become a golden carriage! Impossible for a plain country bumpkin and a prince to join in marriage!"

Then she belts out in her raspy child's voice what is true for Cinderella but even truer for all children like her. "Impossible things are happening every day."

Praise, Encourage, Push! Excerpts from The Message Glorious by Doris Kemp and Barb Radmacher, Reprint permission granted by Barb Radmacher, E-mail: barbradmacher@hotmail.com.

You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed.
Psalm 139:16 (NLT)

When Davey passed, Scott was ten months old. He had just started sitting up. He didn't crawl or attempt to walk. I had recognized in the months before that Scott was slower to reach those "baby milestones" we mothers expect. One day in the hospital before Davey died, I had asked our dear family doctor if he didn't think Scott was slower than other children his age. The doctor put his arm around my shoulder and said, "Oh, Doris, it's been so long since you had a baby, you've just forgotten. All children are different."
Now, I'm sure the doctor knew from the day of Scott's birth that he was a Down's baby. The attending nurse at Scott's delivery, who became a close friend of mine, told me years later that they both knew and decided it would be best not to tell us at that time. I'm also convinced God had his hand in that situation. We had accepted Scott just as the blessing he was (and is)! We had placed no limits on his abilities.
We felt so blessed by Scott's presence, and he was such a happy, healthy baby. We doted on him and praised his every accomplishment.
I became for him, the school teacher I had always wanted to be in my youth. I learned, early on, that Scott had his own slow, steady pace. This slow, steady pace has continued into his adulthood and, I confess, frustrates me more now than it ever did in his childhood! Praise, praise, praise! Encourage, encourage, encourage! Push, push, push! These became my bywords. But don't all children respond well to those same words? Praise. Encourage. Push!

Shortly after Davey's death, my daughter had encouraged me to volunteer in our local hospital. The time I spent there was definitely a healing time for me.
One day, while volunteering in the gift shop, another lady and I were talking about our children. I told her how I worked with Scott and had to encourage and encourage him. She said, "I don't know how you do it. My son got an F on a test at school, and I stayed awake all night worrying about it!" "Oh," I said, "I just can't let myself worry about what he can't do, but must just praise him for what he can do."

Early on, I recognized Scott's great love for music. As a baby, he was often quieted by music. Porter Wagoner had a half-hour program on TV in the evenings, about the time I would start to fix supper for the family. I would place Scott in his playpen, and he would be perfectly content just to listen, hardly moving, just taking it all in. I used to say Porter Wagoner was my babysitter while I prepared the meals.
When Scott was a little older, we bought him a little piano with the play-by-color notes. The grandsons always enjoyed playing on it too, but from the next room, I could always tell when Scott was playing because his love and keen ear for music came out even then. I began to ponder ways to foster this musical talent God had given him.
Scott also loved to be read to, and I love books, so I read to him constantly. It was easy to recognize that he understood what I was reading to him and this pleased me greatly. When Barbara would come home from college, she would read to him, even reading Shakespeare's plays and sonnets aloud.
When we mention this now, Scott says, "Oh Orick, I knew thee well!" Not a Scott memory, I think, but just a normal Scott response.

Scott wrote this poem. I love the Oh! to. Instead of Ode to.

Oh! To a friend A friend that is always there A friend that is always near A friend that is always true That's why I love you.

We quickly discovered that Scott required different "tactics" than we had used on the other children to redirect his behavior. One evening, when Scott was about four years old, Lloyd was working in the barn and Scott was digging in the dirt outside the barn. I went to tell Scott it was time to come in to get ready for bed. Scott said, "No!" and would not get up off the ground.
Lloyd came out of the barn and in his deep, commanding voice said, "Now, Scott, go with your mother into the house."
"No!" Scott replied. Lloyd was not used to being defied and said, "No son of mine tells me 'no' like that! Now get up and go into the house with your mother."
"No!" Scott defiantly exclaimed. Lloyd spanked him and said, "Go into the house!"
"No!"
Lloyd spanked him again. Scott cried, but remained resolute.... "No!"
Lloyd turned to me and said, "Doris, I just don't know what to do with him. You'll have to handle him!"
I said, "Scott, let's play a game. It's called the train game. Do you want to be the engine or the caboose?"
Scott stood up, chose 'caboose,' and we went into the house to get ready for bed. When Scott started school, we played the train game nearly every morning to get him up and ready for the bus on time.

During Scott's early schooling, they suggested that we take him for an evaluation by a professional (I always called them experts). That day, the expert took Scott into a room by himself and, after a spell, she called me in. She said, "Well, Mrs. Kemp, Scott has some real problems with learning. You can send him to school if you want to, but I doubt he can really ever learn anything." She went on, "He can't count, he doesn't understand and follow simple instructions," and she proceeded to relate all that he couldn't do.
I said, "But I read to him all the time and he understands!" She looked at me in a pitying way, and said, "Well, honey, you can read to him if you want to, but I doubt he understands what you read." I distinctly remember my response. I pounded my fists on the table and said, "Well, he does!" I'm sure I came across to her as a defensive mother.
I've often wondered what kind of show Scott had given her. I feel certain he went into "shut-down mode" that only escalated with her negative responses.
In years since, with every great accomplishment Scott has made, I've wished this "expert" could see it. I didn't feel ill toward her, because I'm sure Scott did not give her any hopeful signs that day, but the incident does highlight the importance of not limiting what others are capable of doing.

Doris Kemp, great grandmother of seven, grandmother of eight, mother of six, and wife of more than 50 years started journaling in her early thirties. With so many faith-inspiring years of her life down on paper she felt the Lord nudging her to put it all in one story. In her amazing life Doris has witnessed God's power and faithfulness and she wants you to experience it too. Doris is now 87 years of age and resides in Corydon, Indiana with her 46 year-old son Scott.

Like so many loved ones of Alzheimer's patients, Jim Stevens' family members cherish those increasingly rare moments when he cuts through the fog of the awful disease, however briefly, and takes delight in the company of once-familiar strangers.

Sometimes, something as simple as a can of soda will jog forgotten memories.

"We were visiting him the other day when a someone brought me a Mountain Dew," said Ron Stevens, who spent much of his life caring for Jim. "Now, Jim doesn't know me from Adam these days, but he saw that Mountain Dew — which he's always liked — and said, 'For me?' I could see his eyes light up. Not that he knew what to do with it, but he recognized that he always liked Mountain Dew."

Those times are the good ones. They don't come so often anymore. The speed with which the disease took control of Jim was brutal.

Ron Stevens shows off a living room photo of a healthy Jim, posing proudly with his bag of golf clubs.

"If you saw him teeing off last summer," he said, "you'd never have dreamed that he'd be knocked on his butt this quick."

The man in the photograph belies the cruel nature of the disease.

Ron Stevens, right, knows his son doesn't recognize him, but Jim responds positively to the loving touch of a once-familiar hand. Looking on are Sheltered Living employees Dianna Mitchell and Trish Schomacker. Photo credit: Ann Williamson.

Jim Stevens, you see, is only 44 years old.

Ron and Emmy Lou Stevens, his now-retired parents, knew this time might be coming prematurely in Jim's life. He was born with Down syndrome. As his parents and an older sister, Suzanne Meredith, worked doggedly to make his life as fulfilling as possible, they did so knowing that early onset Alzheimer's was likely. People with Down syndrome, they learned, experience premature aging — sometimes 20 to 30 years faster than the general population — and stand a very high chance of contracting the devastating disease in their 40s or 50s.

"But we never expected it this soon," Ron said. "When he was ambulatory and verbal less than a year ago, he'd call every night. I'd ask him if he had any spending money, and he always said he was broke. He could have $20 in his pocket and he'd still say he was broke."

But those telephone calls eventually stopped connecting. Jim no longer recognized the voices on the other end. He began telling a roommate, "It's for you."

A gradual slipping, a process the Stevens now think began two to three years ago, became a downhill rush. There was more loss of concentration, and eventually bodily functions. Jim began to experience seizures. His parents had to move him from the independent living situation he cherished into a facility providing continual care.

Exceeding predictions

It is a truly awful time in their lives. But you won't hear Ron or Emmy Lou Stevens say they or their son were cheated in their four decades together.

It has been a lifelong struggle since 1965 when Jim was born at a U.S. Air Force base in Newfoundland, where Ron was stationed.

Your child may have to be institutionalized, the Stevens were told.

"You can't print what I told that doctor," Ron remembers. "I told him my son will go wherever I go."

For a career military man, that meant living in many different parts of the world. Ron's position as a quality control officer took him from Canada to Maine, to Forbes Air Force Base in Topeka, to Alaska and Okinawa.

The family finally settled in Topeka in 1977. Topeka, they decided, gave Jim his best chance to live as full a life as possible.

The city at the time was a mecca for families with special needs children. There was the Menninger Foundation, Kansas Neurological Institute, the Capper Foundation. Emmy Lou doubts she could have gotten through the frustrations of Jim's early life without the Down syndrome support group at Menninger.

Despite being told by doctors that Jim might never even roll over as an infant, the Stevens pushed their son to do things people said he couldn't do. He attended school at Berryton Elementary in the Shawnee Heights district and high school at Hope Street at the Capper Foundation. When he turned 21, Jim stunned his parents by saying he wanted to live a reasonably independent lifestyle in a group-home situation. He eventually lived for 10 years with a roommate in an apartment on 29th Street. For 13 years, he held a daily job in housekeeping at Dillards and another on a loading dock at Hills Pet Foods.

"It was more than I thought I could hope for," Emmy Lou said of Jim's full life. "I had no idea, for instance, that he could ever hold a job. But early on in his life I could see that he could do things people said he couldn't do. Miracles occur."

Often, in fact. The Stevens still remember crying tears of joy the first time infant Jim pulled himself upright in his play pen. And the frightening yet joyful moment when Jim, believed to be a non-swimmer, jumped into the deep end of a pool and worked his way to the side.

"The memories of the good times keep you going," Ron Stevens added. "And we had some really good times with Jim growing up. I often tell families dealing with Down syndrome, 'This is a quirk of nature. Learn to live with it, make the best of it, because you will be enriched beyond belief.' Sometimes you'll see these kids do things that make you wonder, 'Which one of us really has the handicap?'

"He really was doing wonderfully. And then the Alzheimer's hit."

The frustration

The Stevens waged a successful personal war against resentment and bitterness throughout Jim's life. But the fight becomes more difficult when the opponent is Alzheimer's and its victim is a still-young man.

Their frustration grows as they fight to get help for their son in this most difficult of times. It spilled over during a recent hospitalization following a major seizure. The battle just to get a replacement diaper in the emergency room became almost unbearable.

"You'd think someone could just get you a Depends," said an emotional Emmy Lou, who spent 15 years working for a physicians' answering service.

"As time goes on, it gets harder," she added. "You think you're coping, but all of a sudden, one little thing sets you back. You just have to pull yourself back up and keep doing your thing."

After 4½ decades of fighting to provide as normal a life as possible for his son, 72-year-old Ron finds his anger sometimes overpowers his desire to suppress it as he watches people respond to those with special needs.

"The frustration comes from the fact that people just don't seem to understand," he said. "We're not looking for assistance, but you might offer some compassion. You might ask, 'Is there anything we can do?' Don't take a 12-foot detour around us because you're afraid you'll catch something! Down syndrome isn't contagious. Neither is Alzheimer's. Don't shun somebody because they have a handicap.

"It was a hard life getting Jim to do the things we thought he was capable of doing, even in his limited capacity. That's why it's so aggravating to see people look at him like, 'Look, there's one.'

"C'mon people, what planet are you from? There are people with handicaps all over the world. Treat them like human beings."

The Stevens know their time with Jim is drawing short. But even after the difficult years, and even in this toughest of all days, they consider themselves blessed to have him in their lives.

"I thank the Lord that he chose me for the trial," Ron Stevens said. "It was a learning experience and an enriching one.

"But right now, it hurts. No parent should see their child in this state of this horrible disease."

Web Wanderings

Health of Children 3 to 17 Years of Age with Down Syndrome in the 1997-2005 National Health Interview Survey. Pediatrics Vol. 123 No. 2 February 2009, pp. e253-e260. URL: http://www.pediatrics.org/cgi/content/full/123/2/e253

Father's Journal

That'll do, donkey, that'll do by E. Duff Wrobbel

Still, at age 10, my daughter really can not carry on a conversation. She can, however, memorize entire movies end to end. Dozens and dozens of them, in fact. And she can, I have determined, pick out a scene that somehow fits the situation. A scary moment and she says "Shrek, I'm looking down!" in a perfect Eddie Murphy voice. When she wants me help me in the kitchen, she quotes Ratatouille. So to be able to talk with my daughter, I now memorize movies too.

ABSTRACT RESULTS. After adjustment for demographic factors, children with Down syndrome had higher odds, compared with children without mental retardation, of recent food/digestive allergy, frequent diarrhea/colitis, >3 ear infections in the previous year, very recent head/chest cold, and developmental disabilities other than mental retardation. They had increased odds that approached significance for recent seizures, very recent stomach/intestinal illness, and asthma. They had substantially higher rates (threefold or higher, compared with children without mental retardation) for nearly all health impact and health and special education service use measures. Of note, >25% of children with Down syndrome needed help with personal care, regularly took prescription medications, had recently seen a medical specialist, and received physical therapy or related therapy. The comparison group with mental retardation without Down syndrome represented many children with multiple serious disabilities who also had high rates of medical conditions and high levels of health impact and service use.