March 2004 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.

NDSS 2003 Conference Report by Mark Mitchell, President, Riverbend Down Syndrome Association, E-mail: marc_peggy_mitchell@yahoo.com
As iron sharpens iron, so a man sharpens the countenance of his friend. Proverbs 27:17 NKJV
I attended a unique workshop hosted by Mr. Thomas O'Neill, Board President of the NDSS. The workshop was entitled For Men Only. This was an interactive workshop for men who have sons or daughters with Down syndrome. The premise of the workshop was that dads are an excellent support system for each other. We broke up into groups of about twelve to discuss our role and experiences as Fathers and Husbands raising children with Down syndrome. In my group we had Fathers of children that ranged from infants to forty years old. We came from all walks of life. All of the men in my group were actively involved in support groups from all over the country. We discussed everything from our initial response to the news that our children had Down syndrome to the many activities that we involve our children in. I didn't know what to expect when we first came together. My past experience with attending conferences and meetings on Down syndrome is that I usually see more mothers in attendance than fathers. I was very pleased when I walked into a room full of fathers dedicated to the advocacy of Down syndrome. These men were very outspoken and knowledgeable. I came away from this particular workshop with a confirmation that we as men need to know our role as a strong support to our wives and our children. We as men are also a great support to one another.

Regional Events

Saturday, March 13, 8:30 p.m. - 4:00 p.m. Down Syndrome Association of Greater St. Louis 2004 Annual Educational Conference for Parents, Caregivers, Relatives, Friends, Professionals and Young Adults. Clayton High School, #1 Mark Twain Circle, Clayton, MO 63105. Registration: $30 per person; $35 non-member.
Keynote speaker: Michael Bérubé — Nothing is Alien to Me. Author of Life As We Know It: A Father, A Family, and an Exceptional Child.

Conference Sessions
Limitations of IEPs — Michael Bérubé
Understanding How Children with Down Syndrome Learn: Proven and Effective Instructional Techniques for Parents and Professionals — Susan Peoples
Individualized Materials to Support Independence and Learning in School and Life Activities — Mary Matthews & Brenda Bird
After the Cliff (The End of Education) — Derrick Dufresne
Music... Brainfood for Kids — Kathleen Spencer
Positive Behavior Supports for Difficult and Challenging Behaviors — Tere Owens & Cindy Browne
Partners Make a Difference — Vicky Davidson
Disability Law and Civil Rights Law — Michael Bérubé
Designing Instruction to Meet the Specific Learning Needs Characteristic to Children with Down Syndrome — Susan Peoples
Housing — Derrick Dufresne
Speech — Eileen Kane
Medical Issues in Down Syndrome — Drs. Janet Mueller & Rob Hanson
Effective Practices for Challenging Behaviors — Peggy Cassani
Laying the Foundation for Healthy Sexuality: Key Issues, Strategies, and Resources for Teaching about Sexuality — Terri Couwenhoven

moonlight is the newsletter of the Riverbend Down Syndrome Association.

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

Teens and Adults Conference
8:30 - 9:00 a.m. Registration
9:00 - 10:00 a.m. Women: Sexuality workshop with Terry Couwenhoven. Men: Fitness workshop with Heather Hawk
10:00 - 11:00 a.m. Men: Sexuality workshop with Terry Couwenhoven. Women: Fitness workshop with Heather Hawk
11:00 - Noon. Because You Are Worth It! Leadership and advocacy training with Debbie Fitzgibbons
Noon - 1:15 p.m. Lunch
1:15 - 2:40 p.m. Creating Spontaneous Theatre with Edward Reggie 2:40 - 4:00 p.m. Dance with Heidi Morgan

April 17, 9:00 a.m. - 3:30 p.m. Conference on Support, Lewis & Clark College Media Room, 5800, Godfrey Road, Godfrey, IL. Join us to learn how we can work together to improve family support in Illinois.
For further information contact the Family Support Network at (309) 693-8981 or fsn@familysupportnetwork.org.

Down Syndrome Articles

Holland by Choice by E. Duff Wrobbel, Ph.D., E-mail: EWROBBE@SIUE.edu.
My daughter's name is Holland, and she has Down syndrome. She is named for the essay Welcome to Holland. In this essay, Mrs. Emily Kinglsey, herself the mother of someone with Down syndrome, likens having a child with a disability to taking an airplane trip to Italy but, upon landing, discovering that you have arrived instead in Holland. I daresay this is as perfect a metaphor as I could imagine for what most parents experience when the doctors and nurses in the delivery room suddenly get quiet and begin averting their eyes. In our case, however, it is perhaps a less perfect metaphor. For us, it would have been more accurate if the essay had us finding out 3 hours into the flight that our plane was on a different course, and that we had to decide whether or not to continue or turn back. You see, my daughter was diagnosed just 17½ weeks into our pregnancy. We had to choose.
Reading Ms. Nancy Valko's Who Wants a 'Defective' Baby [Moonlight, December 2003] really got me thinking. She wrote quite passionately about one of the unspeakables in our community - abortion. I found myself agreeing with almost every point she made, and yet coming to a very different set of conclusions than she. Ms. Valko's daughter Karen was born, and subsequently passed away, in 1982. One important difference between then and now is the far greater prevalence of sophisticated pre-natal testing today. Ms. Valko almost certainly did not, in fact, choose her daughter with Down syndrome. She most likely found out, as most parents of children with Down syndrome do, in the delivery room.
The statistics show that more than 9 of 10 parents receiving a prenatal diagnosis of Down syndrome choose to abort, and this makes me want to weep. But let me be clear here. Capital punishment also makes me weep. Pre-emptive war makes me weep as well. That there are those among us who so willingly choose to end the lives of others appalls me. Still, I wish to say something that will no doubt draw a great deal of ire from some quarters. I am glad we had the right to choose. My Holly will never ask us if we wish things had been different. She will never wonder if we wanted her. And my wife and I will never feel as if we were "stuck" with a "defective" baby. Our daughter is ours by choice. She was not a shock, an adjustment, or a problem. She did not require us to adopt a new way of thinking, or to have a long talk with our higher power. She was just born.
Ask yourself - is having the legal right to an abortion really the problem here? Perhaps to some small degree, it might be. However, our problem is not abortion per se. Our problem is that the people around us abort children just like ours nearly 100% of the time. What does this say about the people around us?
These are people who choose to put bags of silicone gel into their breasts, who choose to have the fat vacuumed off their butts, who use contact lenses to turn their brown eyes blue, get nose jobs, and then use dye to turn their gray hair brown. These are people who use credit cards with 21% APR to buy things they don't need and can't afford just to keep pace with their friends and neighbors. They have call waiting on their cell phones so they won't miss pointless calls while they're in the Mall. They take pills to quit smoking, to feel sexy, and to loose weight, still others to feel happy, or at least less sad, and they give pills to their children to make them sit still and pay attention.
These are people who choose to do things the quick way, the easy way, the same way everyone else around them does it. They have never developed a tolerance for challenges, for complexity, for the unexpected. Then they receive the most unexpected news from a harried doctor with a dozen other patients waiting in the next room, and things get handled the way things always get handled. The usual way. The quick and easy way.
The people around us are us, and we are indeed a sorry lot.
And what about the Down syndrome community itself? Why does the world look at us and see a problem to wash away like graying hair? What are we communicating to our friends and to our communities? What message are we putting out, or not putting out, that those around us see our lives and the lives lived by our children as so undesirable? We ought to be ashamed. But let's not take the easy way out here. It is so simple to just advocate the end of the right to choose, especially if you've never really been in the position to need to make such a choice yourself. It is much harder to show the world that our children are worth choosing. We chose Holland. We would make that choice again. Rather than adding yet another voice to the endless abortion rights din, shouting over, at and past those on the other side of the vast political divide, I prefer to use my voice to show the world the right choice to make. Choose. Just choose well.

Mom, he said I'm Down syndrome by Barbara Tien, SLP, PREP Executive Director, E-mail: barbara@prepprog.org. TAKE 3, January 2001.
Reprinted with the permission of The PREP Program, a not-for-profit resource centre for individuals with Down syndrome, their families and educators in Calgary, Alberta, Canada. Their resource guide Effective Teaching Strategies for Successful Inclusion is available through the web at http://www.prepprog.org.

Just like any personal news, the message about a child's disability best comes from loved ones rather than from strangers. Inclusion of individuals with special needs in school and community life is not without some risks. They will be exposed to a number of challenges, not the least being the attitudes of others. Children who know about themselves, are comfortable with the Down syndrome, and proud of what they can do have the enhanced self esteem needed to withstand the trials and tribulations of growing up with Down syndrome.
Parents are less likely to be taken off guard by a hurting child if he is, from an early age, familiar with the term "Down syndrome" and knows that "it is OK" to have Down syndrome. Starting as toddlers, children need to know that they are loved and valued by their family and that Down syndrome is just one part of who they are. With this preparation, they are more likely at older ages to talk to you, come to you for help and exhibit fewer behavioural problems.

The Need for Self Awareness
When your son or daughter hears the words Down syndrome, you want a positive association to be made "Yes, I know I have Down syndrome and I'm OK." If the subject has been openly, frequently and positively talked about by you all of your child's life, it decreases the likelihood that your child will entertain negative thoughts ... "I'm bad if I have Down syndrome" ... or sad ones ... "He would like me if I didn't have Down Syndrome."
Remember that your child has a visible, easily recognizable handicap that causes him to stand out in a group. Like all individuals with Down syndrome, not only is physical appearance noticeably distinct but their abilities differ greatly from same-age peers. Even at a young age, other children can tell that your child is "different." The only option parents have to safeguard their children's self esteem is to start talking.

In the Preschool Years
The process of teaching acceptance starts when children are very young, and the language of acceptance starts when parents and other caregivers are not shy about who their child is. As their little baby lies in their arms, parents can practice saying the words "Down syndrome" with love and acceptance. "You are such a precious baby with Down syndrome, I will always love you."
As their little one starts to toddle around, parents are encouraged to speak openly about the Down syndrome to family and friends. "This is my son, John. He can't talk yet because of his Down syndrome, but he sure knows what he wants! If you need help understanding him, just wave me to come over." "Sara has just learned to walk. We are so pleased because we thought it would take longer since she has Down syndrome."
"Walking the talk" is easier said than done but parents say it becomes easier and easier as the years go by. Practice does pay off! The nervousness will fade away and awkward words do become smoother with repetition. Soon the phrase "Down syndrome" will become less uncomfortable to say and you may not even recognize that others are benefiting from your teaching. But they are listening and learning that "it is OK" to talk about Down syndrome.

In the School Age Years
Parents who feel that the words "Down syndrome" are often heard in their home may still be taken aback if their child comes home wanting an explanation for something they themselves have taken for granted for so many years. Having the "talk" once is not enough. The child might easily have forgotten, not absorbed the significance of "the talk," or failed to comprehend the language their parents used. At each stage in a child's development, this information must be revisited and reworded to continue to meet the child's developmental needs.
An ECS child with Down syndrome may only need to know that "Down syndrome is OK" while a grade five student may want mom to explain to him, "Why don't my friends have a extra chromosome too?"
A good rule of thumb is to review the Down syndrome at the beginning of each school year. In the interim, watch for behavioural signs such as withdrawal, sadness, unexplained anger, and yes even depression. If your child's world seems to be in turmoil, it's time to talk again.
Developmentally, your child may not be truly aware of the meaning of all your words until much later in life. Although he probably won't be able to describe the genetic and medical implications, he is most likely to be aware of what it means in his everyday life.
"I need Mrs. Smith to help me in class because I have Down syndrome."
"I go to speech therapy because I have Down syndrome."
"My sister can run faster than me, because she doesn't have Down syndrome."
"I only have 5 spelling words because I need more time. I have Down syndrome."
On the other hand, children who come from a home where the words "Down syndrome" are not spoken may be longing for an explanation of what puzzles them. "Why do I get help? Why don't I get the same work to complete? Why is reading so hard?"
Even children who do not have the communication skills to verbalize these questions can still understand and benefit from an explanation given at their developmental level. Explaining Down syndrome to them is a gift that sheds light on who they are. It comes as a relief to children to know why they can't do something as well or as fast as their peers can. They know that they are different even if adults think they don't suspect a thing. For example, it is common knowledge that children who are unaware of being adopted will say, on finding out about their birth family, that "I knew I was different from my family, but I didn't know why."
Equipping your child with knowledge about who he is can also be of benefit when you are struggling to explain the behaviour of others. A young, grade-five girl wanted to know why she wasn't invited to a sleepover. Her mom gently explained that, even though her friend was "OK with the Down syndrome," her parents were not comfortable with the responsibility of having her sleep over. The girl got the message and was satisfied with the reason, which would not have happened had her mom pretended it was due to something else. Honesty helps clear up a lot of confusion!
Talking about Down syndrome openly gives everyone permission to bring up the topic. Many people with outdated preconceptions about Down syndrome would gladly update their knowledge and beliefs, if only given the opportunity. The role of advocate is never ending for parents and it starts with educating others (little and big) as to what Down syndrome is all about.
Preschoolers typically only want to know that their classmate is safe and happy but school age children are often much more curious. If they do not have their questions addressed honestly by knowledgeable adults, they may pick up inaccurate information that could cause them to exclude the child with a disability. Parents are encouraged to meet with their child's teacher to discuss continuing education for students at all grades. The teacher may welcome the parent and child to make a presentation to the class about Down syndrome.
This sharing encourages other students to support your son or daughter in social settings. Although some individuals with Down syndrome have the social maturity and communication skills to respond to unkind comments from others ... "Teasing me is rude. Say that again and I'll tell teacher" ... others need the support of friends ... "Teacher, come quick, John needs you!"
Just like their peers, children with special needs can learn at a young age who is safe and who is not. People who tease or reject the child are "not safe" and your child needs to learn that it is OK to reject their taunts or go for help. Playground bullies do not expect someone with Down syndrome to stand up for himself or go for help. Rather, they expect the student to be intimidated and assume that no one will care enough to intervene. When someone with Down syndrome stands up for himself, he inspires others to help him out.
Ultimately your child then ends up teaching others to update their beliefs about the abilities of individuals with Down syndrome. It is so inspiring to see young people with Down syndrome speaking to their church group, presenting to an assembly, being interviewed for a news report, being invited to speak to the general public and given opportunities to educate others.

In the Teen Years
However well versed teenagers are with their disability, they are prone to wishing that the Down syndrome would just go away. They have the same desire to conform and belong to a peer group as their typical siblings and friends. However, the challenge becomes more difficult when one is slight of stature and struggling academically, socially and emotionally to keep pace.
Just as with other teens, parental words of assurance and love may not be enough. Parents cannot make the situation OK because they can't make the Down syndrome go away, pull friends out of a hat, or get their son or daughter the date they want for the dance. Often students with special needs will open up more about their frustrations to someone other than a family member. They benefit from professional counseling and, depending on individual need, 1-1 or group sessions are recommended. The student needs to appreciate the challenges Down syndrome presents, yet also know that he or she can still make realistic and exciting plans for the future.
On the same note, this is also how students learn that having Down syndrome is not a valid reason for poor work habits, choices or effort. Talking about Down syndrome realistically helps students to deal with their disability and move on with their life. Parents can assist students by acknowledging the disability, setting goals despite it, and focusing in a positive way on what their child can do.
"There are lots of kids without Down syndrome who would have been scared to try that! You are so brave!"
"Now with your Down syndrome, do you think drama or shop is a better option to pick."
"This is my son John. We are so proud of how he's doing in school. He is the only student with Down syndrome in his grade."
"Jenny just won a gold medal in skiing! She participates in the Special Olympics and is teaching other young people with Down syndrome to try their best."

* * * * *

As parents may have found out firsthand, it is presumptuous when others assume that either the individual or his family has accepted the disability. The personal journey to acceptance is private and may well be never-ending for some family members. They may be unable to reconcile their feelings of loss with the fact that Down syndrome is a life-long handicapping condition.
Wherever you are at in the journey, still provide support to your child by giving him the insight into "what makes me special" and how Down syndrome will affect the choices they make in life. With this knowledge, individuals are reassured that their disability will not stop them from being valued members of home, school and community life.

Books That Talk About Down Syndrome
Our Brother has Down's Syndrome: An introduction for children. Shelly Cairo. 1985.
My Sister: Real feelings about being a sibling of a child with special needs. Sheila J. Konschuh. 1991.
Hi, I'm Ben! ... And I've Got a Secret! The reader gets to follow a boy with Down syndrome through his day and try to guess his secret. Julie A. Bouwkamp. 1995.
Keith Edward's Different Day: "Different is just different!" Tag along with Keith Edwards as he tries to wink at all the different people he meets in a day. These people all have different disabilities. Karin Melberg Schwier. 1992.
Dustin's Big School Day. Join Dustin on his first day of school. Alden R. Carter. 1999.
Be Good to Eddie Lee. A story about a friendship and how it changes over the years. Virginia Flemming. 1993.
Count Us In: Growing up with Down syndrome. Two young men who have Down syndrome describe what it means to them. Jason Kingsley, Mitchell Levitz. 1994.
Russ and the Apple Tree Surprise. Read about the great things Russ learns that apple trees can do. Janet Elizabeth Rickert. 1999.
Delicate Threads: Friendships between children with and without special needs in inclusive settings. Debbie Staub. 1998.

Jenessa's Journey by Debbie Sherman, E-mail: DEBSHER123@msn.com. Chapter One, The Sky is Falling, p. 23-6. Reprinted with the permission of the Publish America.
Next, I went to my computer. Being completely ignorant on the subject, I wanted to read everything I could find on Down Syndrome. The web sites were endless. I read from medical journals, from medical files, from dictionaries, educational sites, chromosome experts, scientific studies, and more. Everything I read was positive. Everything I read said not to read or believe anything that was not written in the past five years. There had been so much work done in this field in recent years, so many scientific breakthroughs and medical advances that replaced earlier thinking, findings, and expectations. Limits were no longer being placed on kids with Down Syndrome. These children were being raised in families, not institutions. They had wonderful and fulfilling lives. They learned. They grew. They were real people who could lead real lives. (Nothing at all like the information printed on the handout from the doctor's office. The handout that turned out to be about twenty years old, written back when they sent any kids with disabilities to institutions.) This got me thinking. If you put a perfectly healthy child into an institution instead of into a loving family, how well would that child cope? How well could that child be expected to cope? The environment in which a child is brought up in helps form the child. Therefore, a warm, loving home would be far more conducive to raising a warm, loving child than a medical institution. Even the best institution couldn't provide what a home could. So putting a child with Down Syndrome into an institution was about as ridiculous as putting a healthy baby into one. This wasn't rocket science; this was obvious, even to me.
Still surfing on my computer, I read excerpts from books and magazines. I read many inspirational stories, and realized most people did not feel that having a child with Down Syndrome was a bad thing. Most people actually spoke of their child as being special or gifted; not in the conventional way, but gifted nonetheless. This way of thinking appealed to me, and touched me in ways I cannot possibly explain. I was really in the dark before this; I didn't know any disabled children. Sure, I'd seen lots of movies, and had usually been moved to tears whenever a disabled child had been involved. But I didn't know any. I'd never really given it much thought. Of course, I knew that any number of things could go wrong during my pregnancy. I was one of those people who said "I don't care if it's a boy or a girl, as long as my baby's healthy." I'd suffered a miscarriage before Justin had been born, and until now, that had been my biggest worry. The thought that my baby might have Down Syndrome, or any other syndrome, had never occurred to me before my AFP test. When I first heard of the possibility a few weeks ago, I was terrified. I was angry. I called a friend and asked what had I done wrong in my life that God would punish me in such a way? (She insisted that God didn't work that way, but at the time, I hadn't been ready to listen.) But as I sat there in front of my computer, I found myself overwhelmed with a sense of calm. Reading about these children was uplifting and encouraging, not depressing like I had imagined.
Medically, I learned a lot. I was most comforted when I learned that nothing Bill and I had done could have caused this to happen. Down Syndrome is the most common of all genetic abnormalities, and happens in the earliest stages of creation, when the cells are dividing and separating. It's usually caused by an error in cell division called non-disjunction. Instead of having 46 chromosomes in your cells, people with Down Syndrome have 47. They have an extra portion of the number 21 chromosome present in all, or some, of their cells. This additional genetic material alters the course of development and causes the characteristics associated with the syndrome. There are hundreds of books and web-sites that explain this in much greater, far more scientific detail, so I'll leave that to the experts.
Next I stumbled across other peoples' personal stories and testimonies. The only explanation I can give for how and why I "stumbled" across these stories is that I was "supposed to." I know that I was meant to read these stories on this day. They changed my outlook. They changed my life.
The very first one I read was about a 7 year old girl. She was really quite cute! Her parents credited her development with 3 things:

God
Medical Science
TNI

I knew about God. I knew about medical science. So I went to a search engine and typed in TNI. Turns out the initials stood for Targeted Nutritional Intervention. It was all about getting kids with Down Syndrome the nutrients, vitamins, minerals, amino acids, anti-oxidants and other "stuff" that they need for better growth, better brain development, a healthier immune system, and more. Apparently the scientists and geneticists at TNI discovered people with Down Syndrome don't necessarily metabolize foods and vitamins the way other people do. They have different needs, so they developed a nutritional supplement present in ratios appropriate for Down Syndrome metabolism to help do what their bodies don't always do on their own. I read story after story about how well these children (who were taking these supplements) were doing. These children were amazing! Some were learning at age level, others weren't, but all were living happy, healthier lives than many people previously thought possible. And all because of a specially formulated nutritional supplement! It wasn't a drug, and that was the most appealing part for me. I read everything I could on the subject, then called and got even more information. I was put through to the president of the company (which blew me away) and he spent almost an hour talking to me. He explained how these vitamins helped Down kids, and why they were so important. I was amazed that the president of any company would take time out of his busy schedule to talk to me, but even more amazed that these supplements were helping so many children.
And this is how my pilgrimage began. Armed with new hope and better information, Bill and I decided we would keep our baby, no matter what. All of this took place before we got the amnio results. We went from complete fear and ignorance to an open mind and new resolve. If this is what God had in store for us, then we would handle it. We could handle it. My friend Denise told me that with or without Down Syndrome, our baby girl would be perfect. She pointed out, according to the Bible, that we are all created in the image of God, therefore a child with Down Syndrome would conform to His image just as much as the rest of us. Our baby would be perfectly created in whatever image God wanted her. In His image. This thought gave me great peace. (Thanks, Denise.)
OK. I was ready for anything. We were ready for anything. (Actually, Bill was way ahead of me. Without reading, without any detailed information, he wanted to keep this baby, no matter how bad, no matter how bleak. He didn't care. He loved this little girl, no matter what.)
So when my doctor called that Friday night, we didn't cry. We didn't cringe. I knew (somehow I just knew) that the tests had come back positive that our little girl did in fact have Down Syndrome, and it was OK. I was OK. Bill was OK. We didn't panic. We called our family and friends, and it turned out that we were the ones comforting them. In two short days we had completely changed our way of thinking. We would do this, and we would do it well.

I think I surprised a lot of people by Alan MacDermid. The Herald, December 8, 2003. Reproduced by kind permission of The Herald, Glasgow, Scotland © Newsquest Media Group.
Stuart Campbell is helping to blaze the trail for Down's syndrome children. At 17 he has already attained six Standard grades at his local secondary school, Loudon Academy in Galston, Ayrshire, and is now studying part of the time there and partly at Kilmarnock College.
He may be exceptional, but research to be published today will show children who share Stuart's condition would do much better if they were educated in mainstream schools.
According to the report by education experts, generations of children with Down's may have under-achieved at school because too little was expected of them.
About 9000 children in the UK have the condition, which occurs in one in 600 live births, affecting their memory and ability to communicate and use language.
Medical reference books say that about 6% can derive any benefit from going to school but a study published in the British Journal of Educational Psychology suggests a majority could learn at least a little of the curriculum, and in many cases much more.
The youngest of a family of five, Stuart, from Darvel, East Ayrshire, said yesterday he had expected to pass his French, science, English, home economics, geography and maths certificates, but added: "I think I surprised a lot of people."
He plays chess and is sometimes more than a match for his father and older brother, and is in a local drama group preparing for a production in January.
Stuart shares his contemporaries' enthusiasm for pop music - singing and playing the guitar - and is active in the Scripture Union.
"I don't know yet what I want to do when I leave school, but I am taking a wide range of courses at college," he said.
His parents, Sam and Janette, hope this will give him more time to mature in readiness for the adult world.
Stuart has benefited from the policy of providing education in mainstream schools, both at primary and secondary level, though the system is still evolving, said Mr Campbell.
"He has been something of a guinea pig, and it might have been easier if he had come in two years further down the line."
"But he has been blazing a trail. The school do a professional job and take it seriously. There is nothing worse than putting someone in a school where they are not welcome."
"The further education sector is still catching up. They have a staff group at Kilmarnock to handle learning disability, but the students are taught separately."
"I know adults with Down's syndrome who say they want courses better aimed at preparing them to get jobs. But things are moving in that direction."
The authors of the report, Stephen Turner, of Stirling University, and Alison Alborz, of Manchester University, tracked 106 children with Down's from 1986 to 2000.
The period coincided with a major shift in thinking about how children with learning difficulties should be educated. Schools now have to set targets for children with learning disabilities, just like any other group of pupils, although they are not required to reach the standards expected of most seven, 11, and 14-year-olds.
Using a specially developed "academic attainment index", the researchers found most of the children's scores improved up to age 20.
Only 11% of the children attended mainstream schools.
The researchers said: "The implication for the present study is that some of the children could have achieved higher attainments in mainstream schools."
Only a small number of the children they tracked failed to make any meaningful progress.
The researchers said it was right to argue that preconceived ideas about limits on performance may be restrictive.
But they cautioned against going too far in the opposite direction and putting too much pressure to perform academically on Down's pupils.
"There is also the danger that a new emphasis on achievement will undervalue the education of those unable to make use of new opportunities," they said.

Web Wanderings

Afterlife (A New Found Film) Alison Peebles/Scotland, UK/2003/104 min. URL: [no longer available]
On the verge of the breakthrough of his career, an ambitious young journalist learns that his mother is dying. The discovery forces him to re-evaluate his life and responsibilities - particularly when he inherits the care of his younger sister Roberta, who has Down's Syndrome and has always lived at home.
At first he protests - he's too busy, his life too demanding to accommodate another - but gradually these mismatched siblings achieve a hard-won kind of rapprochement, one which transforms all of their lives in unexpected ways.
[...]

Father's Journal

A Vacation Gone Bad
Half of my wife's friends can not believe I went to the beach with my son and left her at home with a bad back.
The other half think I am the best father in the world and have told their husbands to take the children for a month on vacation.
I am not answering the telephone in dread of irate wives or annoyed husbands.

Easily the film's greatest asset, however, is its superb central performance from Down's Syndrome actress Paula Sage, who invests her scenes alongside McKidd with a wry humour and, at times, a sense of pathos as finely-judged as it is convincing. Screenwriter Andrea Gibb has sketched their relationship with economy and also a refreshing lack of condescension; she's unafraid to let Roberta seem, at times, irrational and selfish, and unwilling to grant her the Zen-like wisdom that typically tends to sugar-coat films about the disabled. Instead, she has created a credible, flesh-and-blood character, as contradictory, needy and truthful as any other.