Free webinars: supporting speech, language and reading for children with Down syndrome

Free webinars Find out more about supporting speech, language and reading development for children with Down syndrome at our free online events next week.

Effective reading instruction DSE's Reading and Language Intervention for Children with Down Syndrome (RLI) is an evidence-based programme designed to teach reading and language skills to children with Down syndrome. RLI incorporates best practice in structured activities delivered in fast-paced daily teaching sessions. It was evaluated in a randomised controlled trial and found to improve rates of progress compared to ordinary teaching. This event is aimed at parents and educators interested in learning more about RLI. It offers an introduction to the new teaching programme, describing how it was designed and evaluated, who it is for, what is involved in delivering it, and what resources are available to support its use. Find out more... Find out more...

See and Learn Saying Words

By Down Syndrome Education Enteprises CIC:

See and Learn Saying Words is designed to support the development of clear speech for children with Down syndrome and other children with similar speech difficulties.

See and Learn Saying Words is designed to help children to say words and improve the accuracy of their word productions through simple activities that encourage the imitation and repetition of one- and two-syllable words. It includes eight sets of words, each starting with a speech sound that usually develops early in typical development.

See and Learn Saying Words can help parents, teachers and therapists to support the regular speech practice that research evidence suggests is necessary to develop clearer speech. It is part of See and Learn Speech - an evidence-based teaching scheme developed by Down Syndrome Education International – a widely recognised leader in research and effective interventions for children with Down syndrome.

The See and Learn Saying Words app features three activities:

• Learning to Say Words – using picture prompt cards and speechreading cues to encourage first attempts at saying words
• Practising Saying Words – using sets of picture prompt cards in games to encourage more complete word production
• Rehearsing Saying Words – multiple repetitions of specific words to improve the clarity and consistency of word production

Amy Volkmann earns Girl Scout Gold Award

from Chron.com:
Amy Volkmann received the Girl Scout Gold Award from the Girl Scouts of San Jacinto Council on Nov. 21.
Amy led a team of volunteers in organizing and hosting a book club during a one-year period for children with Down syndrome, according to a release from Girl Scouts of San Jacinto Council. In addition to bettering their reading skills, book club members also had the chance to learn valuable social skills by interacting with each other and discussing the books they read.
"I learned that helping a person with Down syndrome is fun and that some kids need more help than others," she said in a release.
The Girl Scout Gold Award represents the highest achievement in Girl Scouting; it recognizes girls in grades 9 through 12 who demonstrate leadership through sustainable and measurable Take Action projects.
The Girl Scouts of San Jacinto Council, founded by Mrs. F.M. Law and Miss Corinne Fonde in 1922 in Houston, serves 26 counties in southeast Texas. The council is governed by a board of directors made up of community leaders. Stacy Methvin is the chairwoman of the board and president of the council. Mary Vitek is the chief executive officer.

surprise gift for man with Down syndrome

from khsltv.com by Alan Marsden:

A Christmas wish for an iPad is giving a young man with Down Syndrome the gift of speech.  Matthew Levert, 26, and his family were surprised by Santa Sunday evening during a dinner at Applebee's in Chico. It was put on by a non-profit from New York called  "Gifts From the Heart for Downs." In addition to granting his wish for an iPad the organization gave Matthew $200 worth of iTunes music. The iPad will be used to help Matthew communicate with others by improving his reading, writing and speaking skills. Lacey Levert, Matthew's sister says "When he heard Santa say his name, he was looking around like what... And then when he saw it, his eyes lit up. It was so well worth it, so well worth it. I can't put it into words how grateful my mom and I are"

"Gifts From the Heart for Downs" was created by, and is run by a single mom with two children who have Downs Syndrome.  The group has granted 64 wishes to people with Down Syndrome all over the country since it began in 2010.

The Next Chapter Book Club

from The Next Chapter Book Club (NCBC):

The Next Chapter Book Club (NCBC) offers weekly opportunities for people with developmental disabilities (DD) to read and learn together, talk about books, and make friends in a relaxed, community setting.  A program of The Ohio State University Nisonger Center, NCBC was established in June 2002 to provide adolescents and adults with DD – regardless of reading ability – the chance to be members of a book club.  NCBC has become the preeminent program of its kind.  Today there are NCBC programs in over 100 cities across North America and Europe.

Individual Next Chapter Book Clubs usually consist of five to eight people with disabilities and two volunteer facilitators, some of whom also have disabilities.  The clubs meet in local bookstores, cafés, and similar gathering places to read aloud and discuss a book for one hour each week.  Much like members of any other book club, NCBC members choose the book they want to read and howthey would like to structure their club.  NCBC members read adapted classic novels (i.e. Little Women and Treasure Island) as well as current, popular literature.

Get Involved in the Next Chapter Book Club
Do you live in Central Ohio?
Is there an NCBC Affiliate in your city?
How can I bring the NCBC to my community?

Jot It Down is a writing club for adults and adolescents with intellectual and developmental disabilities. Following the model of the Next Chapter Book Club, Jot It Down promotes social interaction and full community inclusion for its members. Members of Jot It Down work individually and collaboratively to write stories, poems, letters, MadLibs, and other projects.

Chapters Ahead, Inc. is a nonprofit organization providing training, consultation, and a variety of materials to promote lifetime learning, social interaction, and full community participation for individuals with intellectual and developmental disabilities. We are particularly interested in developing practical strategies and solutions that allow persons with disabilities to become valued and productive members of the community. Chapters Ahead grew from our experience developing and disseminating the Next Chapter Book Club, an internationally recognized literacy program for adolescents and adults with disabilities.

NEISD to pilot Down syndrome reading program

from My San Antonio by Lindsay Kastner:

Marie Livingston, the mother of an 8-year-old with Down syndrome, was at a conference in Austin about three years ago when she first heard about the research that she hopes will pave the way for her daughter to learn to read.

“I was listening to these people speak about the progress children can make,” Livingston said. “If you have a child with Down syndrome, you know what a big deal that is.”

Now, thanks in large part to her efforts, the British-born program will be replicated in the North East Independent School District – its first such attempt outside the United Kingdom.

The program is based on the work of Kelly Burgoyne, a researcher with Down Syndrome Education International, whose UK study found that children who received 20 weeks of specially-designed intervention for 40 minutes a day could significantly improve their reading and language skills.

Livingston's child attends a private school in New Braunfels but she began collaborating with North East ISD because the larger district has more resources to carry out a pilot of the program.

“We're always looking for something new,” said Judith Moening, NEISD's executive director for special education.

Burgoyne said her study is the first randomized controlled trial of reading and language in children with Down syndrome. It included about 60 children.

Students receiving the interventions learned to read more words than their peers who did not. After two 20-week sessions, 48 children were able to score on a reading test, compared with 32 before interventions began.

Some children progressed faster than others, Burgoyne said, noting that all of the participants had Down syndrome but some had brain damage or other disabilities as well.

She said her work is based on successful practices for instructing any child to read, with special adaptations for children with Down syndrome — who, for example, are typically good visual learners, which her program takes into account.

The program also incorporates phonics, sight words and new vocabulary.

“We were on the edge of our chairs,” Livingston said, describing the first time she saw videos of elementary-age participants in England reading short story books from cover to cover. She said that, intellectually, her own daughter is considered at the high end of the range for children with Down syndrome but can't read like the children in the videos.

Ten children between the ages of 5 and 8 will participate in the pilot here, including Livingston's daughter, Lilly. Her teacher from New Braunfels Christian Academy will also take part.

All 10 will receive the interventions, but not until the spring semester. For now, they and their teachers will carry on as usual. Periodic evaluations will help Burgoyne determine later if the interventions have any impact on learning.

Last week, she was here in San Antonio to conduct baseline assessments of the children in the pilot.

On Wednesday morning, Burgoyne met with 6-year-old Rafael Hildalgo for a roughly hour-long battery of tests.

Burgoyne held up a card with pictures of a lion, a bear, a cat, and a giraffe. “Where's the lion?” she asked and Rafael pointed. Other tests required Rafael to read increasingly difficult words and to describe simple pictures.

“Wow!” Rafael exclaimed when Burgoyne produced a new test booklet.

The only costs to North East are in staff time to train teachers and implement the new program, Moening said.

“It's an opportunity for our teachers to participate in something that's pretty exciting,” she said.

A foundation started by Livingston, called LLQ USA, will cover other expenses and is continuing to raise money.

Burgoyne is to return in January for another assessment and to train teachers. Students at the University of Texas at San Antonio will pitch in to help with evaluations.

If the pilot is successful, Burgoyne plans to conduct a larger trial.

Livingston said she hopes that one day her daughter will be able to take written tests and even write book reports.

“Everything in the education world has to do with knowing how to read,” she said.

Stephanie Handojo: The wonder kid

by Ika Krismantari, The Jakarta Post, Jakarta:
Some people incorrectly believe that people born with Down syndrome cannot function independently or contribute to society, but Stephanie Handojo has shown that she, like every other person born with Down syndrome, is very special, and more than capable.

On the surface, the 20-year-old looks like an average person with Down syndrome, but beneath the exterior that sometimes people judge her on, she is an extraordinary girl. She has plenty of talent and has
already achieved tremendous things.

Her latest achievement is being selected as one of torchbearers in the run-up to the 2012 Olympic Games in London.

The multitalented girl flew to Britain last month to undertake her leg of the torch relay in Nottingham, London. She was chosen from over 12 million candidates from all around the globe to carry the torch, due to her amazing achievements in sport and other fields.

“I am happy and proud to be able to represent Indonesia,” Stephanie told The Jakarta Post in a recent interview at her home in Kelapa Gading, North Jakarta.

Before being selected as one of the torchbearers for the London Olympics, Stephanie had already made Indonesia proud, winning the gold medal in the 50-meter breast stroke at the Special Olympics World Summer Games in Athens, Greece, a year ago – becoming the first Indonesian special athlete to win the competition.

“She is an inspiration to her Indonesian friends because she broke a record. Indonesia had never won in that competition, but after her victory, many of her friends want to follow in her footsteps,” said Stephanie’s mother, Maria Yustina Tjandrasari, who was also present during the interview, of her daughter’s proud moments.

Apart from excelling in sports, Stephanie, or Fani as she is affectionately called, also stands out in artistic fields. She can play the piano very well. In fact, she was included in the Indonesian Museum of Records (MURI) in 2009 for playing 22 songs on her piano, some of them without a musical score.

With all her awards and recognition, Fani has become a great example for children with Down syndrome.

Medical experts define Down syndrome as a genetic condition, in which a person is born with an extra chromosome. As the result, children with this condition suffer delays in physical and emotional development. But Fani has managed to overcome these limitations, and many other obstacles, to become a very high achiever. In addition to that, she is also a simple, sweet, lovable and good-mannered girl – she greeted us very warmly when the Post came to interview her at home.

Fani is living proof that children with Down syndrome can live a normal life and, beyond that, do plenty of great things that not only make their families proud, but their country as well.

However, as with all achievements, it takes a lot of work and dedication to get there. Fani would not have achieved so much had it not been for the continuous support she received from her mother, Maria. She is a wonderful woman who encouraged, supported, and challenged her daughter every step of the way. It was her mother that first encouraged Fani to swim and play the piano.

“It was by accident. A book I was reading at the time said that children with Down syndrome should be given stimulation as early as possible, and I chose swimming and music because they are good for stimulating both the mind and body,” explained Maria.

Maria, who gave up her career after discovering that her first child was born with Down syndrome, said she designed a special program with specific goals for Fani, without the assistance of any doctors or therapists.  The former badminton athlete said she designed the program after reading a number of books on the subject.

Under her guidance, Fani’s developmental timeline was equal to that of any other child. For instance, she could walk at the age of 1.5 years, and was able to read at 5 years. These things were considered great achievements for children with Down syndrome.

These encouraging signs led Maria to enroll Fani in an average school, not one for children with disabilities. Fani attended classes with children without learning disabilities from elementary school all the way to high school.

“It was not easy on us, because people who did not understand that children with Down syndrome are just like other children, would say or do inappropriate things, and people did not want to accept us, but we persisted,” the mother of three said.

Despite all her dedication and persistence, Maria humbly says that she has only supported her child in living a normal and full life.

“Fani herself was a very determined child. She has a tremendous spirit and enjoys learning,” Maria said of her lovable daughter.

Apart from what her mother says, other people also notice Fani’s determination to live a full life based on her daily activities – not a day goes by without her being involved in sport, or other kinds of lessons or activities.

Her schedule will become even busier soon, as she plans on taking cooking lessons with her mother. “I want to become a chef, and I am now learning how to cook. I recently made a chocolate cake with my mother,” said Fani, sharing her adventures in cooking with an excited and happy expression.

And after graduating from a tourism vocational high school earlier this year, Fani has been running a laundry business too, which was established by her mother.

Maria hopes that by teaching Fani all types of skills, her daughter can continue to be an independent person in the future.

It seems that, with so many skills and talents, and her strong determination to learn new things, the future is wide open and brimming with possibilities for Fani, the wonder kid.

Educational apps to help your child learn

from Special iApps:

Special iApps is a non-profit social enterprise, dedicated to helping children learn. We develop apps for the Apple® iPad®, iPhone® and iPod touch®. All our apps are developed in close co-operation with education professionals, parents and children, and are designed to be suitable for typically developing children and those with learning difficulties or poor fine motor control.

Modern smartphones and touchpads have the potential to transform children's education, because almost all children are attracted to them, and their interface is inherently more usable than that of a traditional desktop computer. However, apps to teach children only succeed if they are designed with an understanding of how children learn.
We recognize that many children are easily distracted, and don't have the mental agility or manual dexterity of a typical adult. We carefully trial our apps with children of varying abilities, and incorporate feedback into our design and testing process.
We work closely with other organizations that support children with disabilities, including Down syndrome, cerebral palsy, autism, and hearing impairment.

Special Stories

Create your own stories with text, pictures and sound. You can read and listen to your stories, print them to any AirPrint-enabled printer, and share them with friends and family. A universal app for iPad, iPhone and iPod touch, Special Stories has many uses including:

• Making photo albums about vacations, trips, and other events
• Improving reading skills
• Encouraging development of spoken language skills
• Creating talking books
• Helping with social skills
• Explaining step-by-step tasks
• Practicing foreign language skills
• Sharing information between home and school
• Sharing news with distant family and friends

Landmark research study shows targeted intervention improves the reading and language skills of children with Down syndrome

from DSE:


A landmark research study has shown that a targeted teaching intervention accelerates progress in reading and language development for children with Down syndrome. The primary results of the study are now available online, ahead of publication in the Journal of Child Psychology and Psychiatry. The study was the first large controlled trial of an intervention designed for children with Down syndrome and was led by researchers at Down Syndrome Education International working with colleagues at the Centre for Reading and Language at the University of York. DSE will be publishing a handbook and other resources, and providing training and support services, to help teachers successfully implement the new reading and language intervention.

Dr Kelly Burgoyne, a Research Psychologist at Down Syndrome Education International who led the study commented, “We are very pleased with the results that clearly indicate the benefits offered by the intervention. We are also pleased with the feedback that we have received from teaching assistants and families about how helpful and enjoyable the intervention has been. We are already starting to pursue new avenues of research based on these results and considering how we will be able to continue to improve the program in the future.”


The first scientific paper from a landmark randomized controlled trial of a reading and language intervention for children with Down syndrome is now available online ahead of publication in the Journal of Child Psychology and Psychiatry. This three year study involved nearly 60 children in schools in York and Portsmouth in the United Kingdom. It was funded by the UK Big Lottery Fund.


for the full article:
Landmark research study shows targeted intervention improves the reading and language skills of children with Down syndrome

iPad, iPod, and iPhone apps to help early development

from Down Syndrome Education International:

Down Syndrome Education International is working with developers to create new learning opportunities for children with Down syndrome using portable devices including iPads and iPods. Recently released apps support language, memory and number skills development.

Computerised educational activities have the potential to offer significant benefits for young people with Down syndrome, with an emphasis on the visual presentation of information and opportunities to encourage lots of practice. DSE is working with partners in the UK, Europe and the US to create apps that target the developmental needs and learning styles of young people with Down syndrome. Some of the first of these apps are now available.

Special Words from Special iApps

Special Words teaches children to recognise written words, using pictures and sounds, on iPad, iPhone and iPod touch. The app has 3 games with increasing difficulty, Match Pictures, Match Words and Match Both.

Special Words comes with the vocabulary and pictures from the early steps of DSE’s See and Learn Language and Reading program, comprising of 96 written words children use in their early vocabulary.

It includes matching pictures, written and spoken words, in 8 languages: American and British English, Spanish, Catalan, French, German, Italian and Swedish. Users can easily replace the words and re-record the audio in any other language their child uses. Users can add more words, pictures and sounds for family members, friends, and familiar objects, to increase their child’s interest, and further develop their vocabulary.

Special Words was developed by Special iApps, a social enterprise founded by parents of a child with Down syndrome who have many years of experience in both education and software. Special iApps is donating a proportion of the global sales of Special Words to Down Syndrome Education International.

• Special Words on the App Store (US edition)
• Special Words on the App Store (UK edition)

 

Memory Fun and Counting Fun from Felix Education Apps

Memory Fun is a memory game where the user has to remember the position of picture cards in order to recall the location of two matching cards. Starting with just four cards to choose from, up to 18 cards can be displayed with a vocabulary of over 100 words.

Counting Fun is a simple counting game designed to encourage practising counting from 1 to 10. Sound effects and animation engage the child’s attention while they tap each item displayed on the screen to hear and see each digit.

Felix Education Apps is a family run business based in Oslo, Norway, designing educational apps. Felix Education Apps is donating a proportion of the global sales of their apps to Down Syndrome Education International.

• Memory Fun on the App Store (US Edition)
• Counting Fun on the App Store (US Edition)

Camp Buddy bridges the gap between school years

from effinghamherald.net:

Brenna Heape’s tiny 7-year-old frame balanced atop two scooter boards as she glided across the floor, pushing and pulling a rope. After a few successful reps her face lit up, and she knew that she’d done well.

As Heape completed the set of therapy during the “motor labs” portion Camp Buddy, her smile was contagious, caught by occupational therapist Melinda Hawkins. Hawkins was holding one end of the rope and encouraging Heape through the exercise, and the two shared a few excited high fives when they finished.

Camp Buddy ended Thursday, after three days last week and three this week at the First Baptist Church of Springfield. The camp, sponsored by the Lowcountry Down Syndrome Society, offers a therapy-based curriculum designed especially for children with Down syndrome.

“It’s amazing,” said Molly Marchese, a founding member of LDSS and proud mother of Ella, 5, who has Down syndrome. “You watch them do something that they couldn’t do last year, and you work hard on it, and then they come back to camp and they’re doing it. So it’s really gratifying for the therapists to see their hard work pay off and for the parents.”

This is the third year that Camp Buddy has been available locally. The camp is intended to bridge the gap between school years so that these children can retain what they’ve learned in school and prepare for the next year.

Marchese said that the camp is also a way to offer essential physical, speech and occupational therapy to children whose parents may not be able to afford such specialized treatment, especially in adverse economic times.

Yet, Ella and the rest of the children continue to make strides. Wednesday morning, Marchese couldn’t contain her emotions at the thought of her husband, Joe, seeing their daughter ride her bike for the first time, a skill she conquered at camp.

“I can’t wait for him to see her ride her bike,” she said. “He’s going to be floored. But you take it for granted, you know; you think all kids know how to ride a bike.… You’re so proud of them. You love all your children; you’re so proud of all of their accomplishments, but to watch them reach a milestone, it’s just overwhelming this joy. They bring so much joy in to your life. To watch them realize they’re accomplishing something, it’s awesome, as a mom.”

Each day the children follow a regimen of therapy with special education teachers, therapists and volunteers. They work their fine, oral and large motor skills while having fun, singing along to music, working on the computer and riding bicycles, something new this year. They practice counting, reading and writing through programs designed specifically for people with delayed learning.

“They can do all of these things,” said Marchese. “It just takes a little extra effort, a little extra work, a little extra patience and time, but they can do the same things that their typical peers can do.”

The LDSS was founded in 2006 by Candy and John Bogardus, who have a 6-year-old daughter, Lainey, with Down syndrome. Candy Bogardus said that she and her husband went looking for a local support system and found the closest groups in Jacksonville and Atlanta.

In addition to Camp Buddy, which accommodates Effingham and Chatham counties, the group provides new parent packets for new parents of children with Down syndrome with information about the genetic chromosomal disease and early intervention therapy.

“When Kristen (Fears) was born, I didn’t know anything about Down syndrome,” LDSS member Wendy Fears said of her daughter. “What you did know was all negative things.”

Fears said that her mother never thought Kristen would be able to read, and that through early intervention and therapy, Kristen is able to play ball and dance at recitals like other children. She said that the expectations of this generation are far beyond those with Down syndrome before them.

“Their quality of life is going to be phenomenal because of things like (Camp Buddy),” said Marchese. “They’re going to be productive members of the community and they already are.”
The group also sponsors a Night of Champions award banquet, honoring businesses that employ people with disabilities and those employees.

“Our whole goal with that is to recognize that these people are making a difference,” said Bogardus, also secretary of LDSS, “and we invite other businesses to show them how they could become a part of that difference.”

Marchese said that the LDSS, while still only able to offer Camp Buddy to school age children, hopes that as the Buddy Walk grows, more people will offer to run camps for teenagers and adults with Down syndrome, catering to those needs.

Bogardus said: “We just want to, at this stage, help (our children) to be as successful as possible as they get older and to realize that they don’t have to place any limits on themselves. By doing that, we help the community to not want to place limits on them, because that’s another goal of ours is the community awareness that our children are just children and people with Down syndrome are just people.”