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.
This issue in dedicated in memory of Leslie W. Duffen, born November 14, 1924. He died on May 8, aged 79 and is survived by his wife, Dylis, and their daughter, Sarah.
Mr. Duffen was a founding member of the Down's Babies Group in Birmingham - the forerunner of the current UK Down's Syndrome Association and made a lasting difference to the lives of many young people with Down syndrome and their families. In 1979 he wrote a letter to Sue Buckley, a psychologist at what was then Portsmouth Polytechnic - who has an adopted daughter with Down syndrome - which prompted research into reading and language development and led to the establishment of The Down Syndrome Educational Trust and The Sarah Duffen Centre, which opened in Hampshire in 1991.
- Helping People Make Most of Their Financial Future. Waddell & Reed Financial Services
- Planning for the Care and Comfort of Individuals with Disabilities. Ehlert Financial Group, Inc.
Regional Events
September 19. 11:00 a.m. - 12:00 p.m. Second Annual Down Syndrome Benefit Poker Run. Time in a Bottle, 630 State St., Chester, IL. (618) 826-9870. All proceeds go to the Down Syndrome Association of Greater St. Louis Buddy Walk. Cash donation can be made at the State Bank of Prairie Du Rocher, Prairie Du Rocher, IL 62277 c/o Wendy Yankey, Buddy Walk. Contact: Wendy Yankey (618) 284-7729, E-mail: windy_yankey2000@yahoo.com.
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October 11, 2004. 7:00 p.m. Down Syndrome Association of Greater St. Louis Educational Series
Meetings: Down Syndrome and Early Literacy. Ages 0 - 3. Victor and Emmanuel Bishop will present methods and tips, based on the relative visual strengths in Down syndrome, to provide toddlers with Down syndrome an opportunity to excel with sight-reading during the early intervention years.
Please RSVP via e-mail to Anne Wadell, toaster03@charter.net or by calling the DSAGSL office at (314) 961-2504.
October 27, 2004. 8:15 a.m. - 4:30 p.m. Helping Young Children with Sensory Processing Disorder. Marriott St. Louis Airport, I-70 at Lambert Airport, St. Louis, MO 63134 (314) 423-9700.
Agenda: The Young Out-of-Sync Child at Home & School; The Out-of-Sync Child has Fun: SAFE Activities; Creating a Sensory Diet for Young Children; Improving Communication among Therapists, Teachers, and Parents. Cost: Parents/Family Members: $110.00, for more information or to register, call 1 (888) 357-5867.
STARNet Region IV
September 8, 2004. Registration & Continental Breakfast: 8:30 am - Workshop: 9:00 a.m. - 3:00 p.m. H.U.M. - Highly Usable Music. Keller Convention Center, 1202 N. Keller Drive, Effingham, IL (For directions only: 217-342-2131).
Re-energize your music curriculum with songs and movement activities you can use next week and all year with your children. We'll format a dedicated weekly music time and practice techniques that really work! We'll use instruments, rethink that felt board, and even have a snowball fight! Carole will also include a segment specifically dealing with toddlers - music/activities methodology specific to 1-3 year olds. A handout will be provided, and Miss Carole's CD's will be available for sale. Be sure to dress for movement!
Carole Peterson has been the Pied Piper of active music for children in Chicago's Northwest Suburbs for over 13 years. Her energetic style and enthusiasm invites even the smallest child to follow her in singing and rhythmic movement, and the fun begins!
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Carole earned a BS from Northwestern University. Her first CD, "Sticky Bubble Gum...and Other Tasty Tunes" was released in 2002. She also entertains for pre-school and inter-generational events with Alvin McGovern of the Old Town School of Folk Music.
For additional information, contact Cheryl Neville, (618) 397-8930, ext. 166.
November 13, 2004. Registration & Morning Refreshments: 8:30 a.m. - Workshop: 9:00 a.m. - 12:00 p.m. Child Care plus+ Curriculum on Inclusion: Practical Strategies for Early Childhood Programs. Location: Uni-Pres Kindercottage, 564 Veronica Avenue, East St. Louis, Illinois 62205 (For directions only: 618-874-6505)
This workshop is Part 3 of a 6-part training. You may attend one, several or all in this series of trainings. These workshops will help early childhood professionals by offering useful suggestions and ideas for minor modifications that make it easier to include children with a wide variety of needs.
Creating an Accessible Environment
- Accessibility in Early Childhood Settings
- Accessibility for Individual Children
Maintaining a Safe and Healthy Environment
- Eliminating Health and Safety Hazards
- Teaching Health and Safety Disinfecting Play Surfaces and Toys When Children are Sick
Arranging the Environment for Learning Environmental
- Messages as a Teaching Strategy
- Arranging the Environment to Meet IEP Goals
For additional information, contact Cheryl Neville, (618) 397-8930, ext. 166.
Down Syndrome Articles
The ARC Family Diaries. Edited by Judy Elbaum and Lonye Rasch. © 2002 The ARC of Essex County, New Jersey. Reprinted with the permission of the editors.
He's cool (p. 115-6)
Three short weeks ago I let my almost five-year-old little boy "out of the closet." Not that I have sheltered him, but I hadn't considered that usual gymnastics or swimming or any other "typical" group sessions with him because I thought he wasn't ready yet. He wasn't quite done.
He had attended Stepping Stones, a wonderful school for children with Down syndrome, all this life, and his preschool teacher suggested half-day sessions in "regular" preschool in addition to his "special" school. I cried-I was thrilled. But was I ready to show him to others? Some, I'm sure, had never even been that close to a person with Down syndrome. How would he act? I put on my proud, confident mother face (I was scared to death) and off we went on our first day. It was uneventful. So was the next, and the next. He did it! I did it! The five years of school prepared him for this day.
But what about the other kids? Their mothers always smiled at me and my little boy. But what about the kids?
I was picking up my angel for school today and I overheard a little boy say to his mom, "That's James. He's new. He's cool!"
The most beautiful words I have ever heard describing my little boy. The words of acceptance.
Yeah, James. He's cool.
— Resa Soranno
A Grandmother's Special Gift (p. 158-60)
My eldest daughter gave me a special gift. Being a mother of three girls myself, and a grandmother of two beautiful granddaughters, I was eagerly looking forward to the birth of my third grandchild, a boy. Michael Charles was born on July 29, 1995. We learned almost immediately that he had Down syndrome and were unprepared for the news. I was stunned, and I felt a double pain... for baby Michael and for my own child.
As I held that precious bundle in the hospital, I knew he was special and beautiful. I tried not to think of what life would hold for him and vowed that I would do everything possible to help his parents and sisters cope with their paths their lives would now take. Poppy said it all when he said, "He's one of us, and we love him."
I was sure time would help me overcome my feelings of helplessness and despair. And it did. In the first few months after his birth, I began to see that he was just a baby, after all, responding to all the love and attention he received. As his medical difficulties began to surface, I realized just how much I loved him. I was so frightened so many times as I watched him face one medical emergency after another. I could not bear the thought of losing him. But Michael is a tough little guy, and just when I thought there was no hope, he came back. I look back on those days now and realize that Down syndrome is just another way of growing up. Michael is a happy little boy who is slowly recovering the ground he lost when he faced those setbacks. Each step forward is cause for celebration: Michael smiled today! Michael waved bye-bye today! Thank you, God.
There is hidden strength in each of us. Some never find it. I found mine through Michael, and I am a far better person since Michael entered my life. I have learned compassion, understanding, patience, sharing, and the real meaning of "family." Michael is my treasure, and I share him with everyone... family, friends, and strangers. He smiles at me, completely unaware of what he has added to my life.
Life without Michael? Unthinkable. He is one of us, and I couldn't be prouder. He has overcome every speed bump placed in his path and happily goes on, not ever realizing what he has done for me. He has given me a perspective on life that I would never have had, and I am forever grateful. God bless you, Michael, and thank you.
—Eileen Conklin
Down 'cure' might be within reach by Carey Goldberg, Globe Staff, E-mail: Goldberg@globe.com. January. 27, 2004. © Copyright 2004 Globe Newspaper Company. Reprinted Courtesy of The Boston Globe granted by Mary Jane Wilkinson, Managing Editor/Administration.
A decade ago, any researcher who dared to suggest that Down syndrome could one day be "cured" was heading straight for the scientific fringe.
Mainstream consensus went: Down syndrome, the leading genetic cause of mental retardation, was too complex a problem even to approach.
Now, although that goal remains beyond the horizon, a growing number of reputable researchers at universities such as Stanford and Columbia say they can foresee a time when they'll be able to break the link between Down syndrome and retardation. Armed with an array of new tools-from genome mapping and stem cells to genetically engineered mice and a deepening understanding of Alzheimer's disease - they are trying to pinpoint just how the extra chromosome of Down syndrome leads to retardation and a host of other problems.
Once they figure that out, the thinking goes, perhaps they can someday help people with Down Syndrome gain some IQ points, or even develop normal intelligence. There is a precedent: Certain rare genetic metabolic diseases once meant certain retardation. Now, those babies can grow up mentally normal, thanks to diagnosis as newborns, pills and diet restrictions.
"The whole research scene has changed dramatically" since the extra chromosome, Chromosome 21, was mapped in 2000, said Suzanne Armstrong, spokeswoman for the National Down Syndrome Society.
"We realize that any potential treatments resulting from research at the genetic level are years away," she said, "but we're very hopeful." More than 350,000 Americans have Down syndrome and the moderate or mild retardation that generally goes along with it. They are at higher risk for heart defects, childhood leukemia and other physical problems, too. They also tend to have a distinctive look - short stature, small nose, a relatively flat face. The life expectancy for people with Down syndrome has doubled in the last two decades or so, from 25 to 49 years; and the sweeping movement to raise children at home instead of in institutions has greatly improved the quality of those longer lives, parents and advocates say.
Sheila Cannon, coordinator for the Down syndrome center at Children's Hospital in Pittsburgh, said the progress on health and quality-of-life issues since her daughter, Kerry, was born 17 years ago has already been stunning: Back then, she was told, "Down Syndrome is what it is."
Now, it seems, that may not always be true. Prevention of mental retardation "may not happen within the next few years, and it may not even be helpful to my daughter, but it probably would be helpful to the generations that follow," she said. "That's how I look at it."
Getting there, advocates and researchers say, will require much more of a financial commitment from the federal government.
In recent years, federal funding for Down syndrome research has averaged about $10 million a year; the National Down Syndrome Society is now pushing for twice that sum. By comparison, Alzheimer's disease, which affects more than 4 million people, got $600 million from the National Institutes of Health alone in 2002.
But some of that river of Alzheimer's money is trickling over to Down syndrome research because of an intriguing connection: The brains of virtually all middle-aged people with Down syndrome show telltale signs of Alzheimer's disease, and one of the genes on Chromosome 21 is linked to production of beta-amyloid, a protein that accumulates in abnormal form in Alzheimer's brains. The beta-amyloid connection raises an exciting prospect, said Dr. Michael Shelanski, codirector of the Taub Institute for Research on Alzheimer's disease at Columbia University: It could be, he said, that a child with Down syndrome becomes retarded simply because "the child is developing with a flood of beta-amyloid, so they don't learn very well, they don't make synapses very well."
"We're beginning to study this in the mouse," he said, and eventually, perhaps, drugs that will be developed to sop up extra beta-amyloid in the brains of Alzheimer's patients could also be used to reduce retardation in children. Human research is beginning as well. In a 2002 article in the journal The Lancet, researchers took two sets of post-mortem fetuses, one with Down syndrome and one without, and compared the gene activity of their neural stem cells. They found that certain genes that help brain cells develop and communicate were disrupted only in the Down syndrome fetuses. A Lancet commentary noted that those genes could turn out to be targets for drug and gene therapy in humans. But that will take years to determine. In the meantime, a few clinical trials have begun to test existing drugs to enhance brain function in people with Down syndrome, largely on the premise that whatever shows promise improving learning and memory with Alzheimer's disease might work in Down syndrome as well. Pfizer, which makes an Alzheimer's drug called Aricept, is testing it in dozens of people with Down syndrome around the country, checking for any noticeable improvement in memory, attention, language and more.
Results of previous studies of Aricept have tended to be modest, however, said Dr. Ira Lott, director of pediatric neurology at the University of California at Irvine. "The problem with that whole class of medication is that it's temporary," he said. "It's like hipping a tired horse - the horse runs faster and then poops out." He and colleagues are now working on a study using high-potency antioxidants - such as vitamins E and C - for people with Down syndrome. Already, the vitamins have shown some promise in improving learning and memory in Alzheimer's patients, he said.
Researchers tend to have an easier time imagining an antiretardation treatment that begins at birth - or even before - than one given in adulthood. But an adult treatment is not impossible, said Dr. William C. Mobley, director of a new center for research on Down syndrome at Stanford University. The effects of the extra chromosome "may or may not be reversible," he said. "We just don't know." Years ago, a scientist stating that the retardation of Down syndrome could be prevented was "a voice in the wilderness," said Dr. Leonard E. Maroun, a professor emeritus of microbiology and immunology at the Southern Illinois University School of Medicine.
That is changing a bit, said Maroun, who has worked for years on the role that interferon, a virus-fighting protein used to treat some cancers, may play in Down syndrome. He has patented the idea of anti-interferon therapy and is developing an anti-interferon drug that he plans to sell through his Beverly-based start-up, Meiogen Biotechnology.
"The general public's image of Down syndrome is one of hopelessness," Maroun said. But, "I'm virtually certain we've got something that will really help. Maybe I'm wrong, but certainly there are ideas out there that make it plausible that we could help these kids, and could encourage scientists to get into this area."
Welcome to Rob's World. A warm and humorous story about our son, Robbie, who has Down syndrome. Self-published (1998) by Diane Magill, E-mail: dianemagill@bresnan.net. To order, send $10.00 (includes S&H) to the author:
Diane Magill
7412 Cox Road
Cheyenne, WY 82009
There are so many stories to tell about Robbie. He was diagnosed with leukemia when he was 6 years old. He is a brave person. He has a great sense of humor. The book will make you laugh and cry, but it is written to let you know that other families have traveled the road you are on and have learned to enjoy it.
The following is a paper done by l on January 12, 1988, for her Composition class in high school. Words describing disabilities are constantly changing and have changed a great deal since this was written. This article was worded appropriately for the most part, for its time, 1988.
My Little Brother (p. 16-7)
Having a younger brother who is handicapped has never been a burden for me. Robbie, who has brought so much joy and happiness to our family, is treated equally in our home; never is he looked upon as an invalid.
The special thing about Robbie is that, even though he has Down's syndrome, he works hard to achieve and to overcome his handicap.
Participating yearly in the Special Olympics, Robbie has shown that he has the desire to compete with other children and demonstrate his athletic abilities.
Two years ago, he traveled to Jackson Hole for a skiing competition, and the year before, he ran track on the Central field. Never attending these events, I was unable to see all of the effort put forth by Robbie.
Last year, though, I had the opportunity to witness my brother in action. The Special Olympics swimming events were hosted by Central High last April. All handicapped children and adults are encouraged to compete.
I arrived late, but went over to Robbie to wish him luck. He simply smiled, and instead of kissing me and giving me a hug, he shook my hand and commanded, "Go sit down, Lisa." I found a seat in the bleachers by my mom and sought out Robbie.
He stood there quietly, looking dignified and in control of all taking place around him. He walked over and patted his friend, Walter, on the back and wished him "Gud Lik, Wall-ter!"
The judges called out the contenders for the next heat. Robbie strutted up to the podium with an air of confidence and took his stance. The atmosphere took on an aura of electricity, as Robbie turned to the audience and gave a brief salute. "Tweet!" The whistle blared and it was all action.
Robbie jumped into the pool and swam with all that was in him. The other kids began to gradually pull ahead of him. Robbie reached the end of the first length, while the other participants were halfway back down the pool. Robbie started the long journey back and as he approached the middle came to a stop.
Quite filled the room, and people wondered if there was something wrong or if this little handicapped boy knew he was supposed to go to the other end. Robbie dog-paddled in the water, too exhausted to go on. My mom jumped to her feet and yelled, "Come on Robbie." After that, the whole crowd started in on the chant and clapping their hands. Inspired by the crowds, and my mother's attention, Robbie raised his arm, a sign to the crowd that he could do it.
Robbie propelled across the water in a matter of seconds and reached the end. Too exhausted to get out of the water, he reached out a hand for help. Bracing his feet against the edge of the pool, he leaned back, expecting be pulled up. The helper expected just the opposite and almost fell into the pool. With the help of another person, Robbie finally came out of the water. He then walked over and received his bronze medal; no person in the Special Olympics loses because they are all considered winners.
Later that night, Robbie came home and gave my family a play-by-play account of "how tird" he had been and "what a gud jb he had dun".
Even though Robbie was exhausted, he never gave up. It wasn't important that he won; finishing the race was a greater accomplishment. Competing with others shows the desire to compete while doing activities that "normal" people do. Currently Robbie is training for Special Olympics basketball games and will be competing again early this spring. There is not doubt in his mind that he is a winner.
People First Language (p. 70)
The key to appropriate disability language is to place the person first so that the person has more importance than the disability.
| Say |
Instead of |
| Person who has |
person who is afflicted with... |
| Child who has |
suffering from, victim of |
| Child who has a disability |
handicapped child |
| Person who has Cerebral Palsy |
palsied, spastic |
Person who is nonverbal, or
person without speech |
mute or dumb |
Person who has an emotional, or
mental health needs |
crazy or insane |
| Person who is deaf or hard of hearing |
deaf and dumb |
| Person who uses a wheelchair |
confined to a wheelchair, wheelchair bound |
| Person who has a disability |
retarded person, mentally retarded, slow |
| Person who has epilepsy or seizures |
epileptic, fits |
| Person who has Down syndrome |
mongoloid, Downie, retarded |
| Person who has a learning disability |
learning disabled |
| Person who has a physical disability |
crippled person, lame |
| Person who has a cleft palate |
harelip |
| Person of short stature, or little person |
midget or dwarf |
Learning from individual stories - practical ideas for reading, number and bike riding: Individual Learning Time - unlocking potential. Down Syndrome News and Update 3(3), 89 (December 2003). Printed with the permission of the author and that of the editor: Professor Sue Buckley. © 2003 The Down Syndrome Educational Trust. All Rights Reserved.
Dear Sue,
I am writing to comment on points raised by Ruth Palatnik and Jill O'Connor in the September 2003 issue of Down Syndrome News and Update.
'Nature' versus 'nurture' is a controversial issue that will not be resolved until a large number of children has been brought up from birth in the optimum conditions for maximum intellectual growth. This is a long way in the future if only because we still have only limited ideas on what these 'optimum conditions' are. Certainly no child, with or without Down syndrome, has yet been brought up under these conditions.
When I say that my daughter Sarah was 'congenitally above average' I am making a statement unsupported by any evidence except that her achievements are above average - so that she may well have had a head start. However it is impossible to separate the effects of Sarah's learning environment, since birth, from the effect of her congenital ability. Elsewhere, I coined a phrase 'Individual Learning Time' (ILT) and gave some quantitative estimates of the levels of the ILT that Sarah has had from an early age - though not as early as I now wish - and to a limited extent is still having. Most children, with or without Down syndrome, achieve nothing like these levels of ILT. I believe that without this input Sarah would now be illiterate, inarticulate, innumerate and physically inactive - whatever her congenital ability.
The word 'quantitative' in the last paragraph raises an important point. In most human activity it is taken for granted that the degree of success in that activity is directly proportional to the time spent in achieving success. Only in education is this factor completely ignored - to the extent that we simply do not know the extent of individual learning time in, for example, learning to read or in any other learning. It certainly bears no relationship to class teaching time.
Ruth asks for suggestions about the levels that children can be expected to achieve at certain ages in - for example - reading. I do not think that these can be divorced from the amount of ILT that the child has had and is having, and the age at which he starts learning. Of course there will be a range of achievement in our children, as in all children, but we simply do not yet know what the upper level of that range of achievement is, in reading or anything else, under optimum learning conditions.
Jill suspects that most people with Down syndrome are working 'proportionally nearer to their limits' than the rest of us. Well, maybe, but I agree far more with her earlier suggestion that we don't really know the limits of the potential of anyone, with or without Down syndrome, because our usual home and school environments are far removed from the optimum for maximum growth. Every year we can read of a six year old taking GCSEs, or some such. This probably happens because his or her educational environment has been much nearer to the optimum than usual. Asserting that such a child must have been born as a 'genius' is a rationalisation of our failure radically to improve the educational environment for all our children. The conventional part time, class teaching, school education is nowhere near the optimum, even if it is started early enough.
Ruth suggests that parents can be discouraged if too much is made of the 'high achievers'. Thirty five years ago I would have been immensely heartened and encouraged to hear that there was even one person with Down syndrome who was at any level of achievement. I can assure Ruth that it was very much more discouraging to be given no hope at all than to be given too high a target to aim at. High expectations must be better for any child, given the necessary action, than aiming too low or not aiming at all. Parents can surely put up with some disappointment in their children's achievements if they know that they have given all the time that they can to help their children develop, using the best advice available to them. No parent can do more.
Leslie Duffen, Devon, UK
Down Syndrome and Bilingualism by Ms. Johanne Ostad, E-mail: RuppertOstad@t-online.de. News & Views, June 2003, Down Syndrome Association Malta. Reprinted with the permission of the author.
Language plays a major role in the everyday life of every human being. Through our language we communicate with others, we express our feelings and we can put our needs and wishes into words. Our language becomes a part of ourselves, a part of our identity.
In the mainly monolingual north-European countries, most people identify with one language only. However, because of migration and student/work-exchange during the last decades, the rate of mixed marriages is rapidly increasing. The children born into these families grow up identifying not only with two languages, but also with two, sometimes very different, cultures. To a monolingual society, this situation is viewed upon with suspicion and there are many prejudices against a bilingual upbringing.
Then what should one do, when the child born into a multicultural family, has Down syndrome?
Can a child that is intellectually impaired cope with more than one language?
This is the question I want to answer in my Ph.D. When I tell people - even specialists - the theme of my Ph.D., I usually get the same answer: "Children with Down syndrome have so many problems anyway, more than one language is much too much."
It is true that children with Down syndrome have more problems than typically developed children in almost every area of their development. However, it is necessary to specify exactly what kind of problems they are, and whether they actually do have an influence on the child's linguistic abilities. I maintain that there are two different kinds of problems, always taking into account that each child is unique with his/her own particular problems and possibilities.
First of all, children with Down syndrome have very different mental capabilities from other children. They have a short attention span, their short time memory is impaired and they need many more repetitions in order to learn words or concepts. This, however, does not mean that they are not able to learn words, concepts, or language.
Secondly, the children have several congenital symptoms or characteristics like hypotonia, heart disease, hearing/ vision disorders, abnormalities in the articulation organs, etc. Some of these factors can impede language development but with the right medical treatment, speech and physiotherapy, they can be greatly improved. Thus these physical aspects do not have to hinder the child in learning a language, nor do they hinder a child in learning two languages.
As of today there exists no empirical evidence against bilingual upbringing of children with Down syndrome, but a lot of anecdotal evidence supporting it. Hence when anybody points out "all the problems" the child with Down syndrome has, none of the problems mentioned actually speak against bilingualism.
As I see it, the main problem children with Down syndrome struggle with, which might and still does prevent them from growing up bilingually, is the specialists surprising lack of knowledge and experience when it comes to Down syndrome.
For my paper, I have met 30 bilingual families in Germany, and almost all of them tell the same story. They were told that their child would have immense problems in learning to speak. Two languages at the same time would be much too difficult - it would probably even interfere with the acquisition of the first language, so that the child would end up not talking at all. The saying "a person is not more handicapped than society makes him" might be somewhat exaggerated, but to a certain degree true. Because we expect less from a child with Down syndrome, we stimulate them less when they actually would need a lot more stimulation. A German study has shown, that even health care professionals talk and play less with children with Down syndrome, even though they know how important the extra stimulation is.
Because so many factors play a role for the bilingual language acquisition by children with Down syndrome, I decided to do a case study. I am observing and recording three bilingual children living in Germany, starting with the onset of the one-word stage. Additionally, I am developing a questionnaire for all the families I have met, in order to compare their experiences with the ones I will make with the case study. Through this I hope to see whether "my" three children are representative.
There are two main reasons why such a study is important.
Firstly, because it affects so many families and because of the reasons mentioned above, it will affect more and more in the years to come.
Secondly, because a child will suffer psychologically as well as socially when he or she meets language barriers within his or her own family. Siblings might be able to manage two languages and will frequently and subconsciously switch between these. Non-German speaking family members will not be able to communicate with the child. Thus the child might feel isolated and become depressed and aggressive. To suddenly change the whole way of communication in the family practised through many years however, is very difficult, if not impossible.
Being able to communicate in two languages will give the child with Down syndrome a self-confidence boost. One mother told me, her son wasn't able to ride a bike, but he was able to speak English long before his peers, so that made them equals.
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| Johanne Ostad |
With my paper I do not want to promote the idea that every child with Down syndrome in a bilingual family should or could learn two languages fluently. However I hope to prove that they do have the capability of understanding more than one language and expressing themselves in both - and that one should not deprive them of this opportunity only and exclusively because they have Down syndrome.
Editorial Note:
Recently we had the pleasure of meeting Johanne Ostad who specifically came to Malta to do research on bilingualism. Since both Maltese and English are spoken in Malta, children with Down Syndrome come into contact with the bilingual situation quite often.
Ms Ostad was born in Norway in 1975, and lived in Bergen until she finished school. At the age of 18 she went to Spain for 3 months, then left for Germany. She lived in Berlin for 5 years. There she studied Russian, Scandinavian Languages, Spanish and Linguistics. For her final thesis she wrote about German/Norwegian bilingualism. After marrying her German boyfriend in 2000 they moved to Hamburg.
Last year she started her Ph.D. "Children with Down syndrome and bilingualism" and expects to complete her studies at the end of 2005.
Web Wanderings
Love brings couple a rare kind of freedom by Steve Rock, The Kansas City Star. URL: http://www.kansascity.com/mld/kansascity/news/local/8354020.htm
Father's Journal
Los Funerales de Papá Grande
In fulfillment for his intentions, Emmanuel's grandfather went on a pilgrimage to Mexico to give thanks to Our Lady after my newborn's successful surgery.
He who would let my son wear his cowboy hat; he who cherished his Spanish speaking grandson; he who will never see my son play his 1/10 size violin; he who loved my son as much as I do.
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[...] This is a story about Derek and Nicole Houston, a fairytale couple whose average life is anything but ordinary. They live in an Olathe apartment, they hold steady jobs, and they recently celebrated their nuptials with a honeymoon cruise to the Bahamas.
They also have Down syndrome.
It wasn't that long ago that stories like this didn't exist, because people with Down syndrome were pigeonholed into lifetimes of loneliness. Twenty or 30 years ago, experts thought they couldn't form mature emotional bonds, that true love and grandiose weddings and living happily ever after were ideals reserved for everybody else.
Some of them never left home. Others never left a state home. [...]