DSR Episode #27: Inclusive Practices with Michael Remus

DSR Episode #27: Inclusive Practices with Michael Remus
Michael Remus is an expert on inclusion.  He is a parent of two children with special needs.  He has been a teacher and has written several books.  But most importantly (to me anyway), he took an entire school district into the world of full inclusion in 5 years.  Not only that, but it is showing great results and he has the data to prove it.  Michael was a super guest and told us lots of important information we can use to better the education of our children.  What a resource for the rest of us!
We learned about what inclusion means.  Inclusion means including EVERYONE in the main classroom.  However, some children will require additional support (modifications and/or accommodations).   This means that your child may need extra help in the classroom.  It may also mean that your child will work from modified materials while in the classroom.  It DOES NOT mean throwing a child in the classroom without the proper supports.

321edcuate! Give & Get Back fundraiser from 321foundation!

EXCITING NEWS TO SHARE
The 321foundation is starting a fundraising campaign TODAY...321educate! ANYONE can set up a “team” online and start raising funds…or you can find your favorite team and donate today! The money you raise will go back to help empower individuals with Down syndrome and other intellectual disabilities through educational seminars, social events and advocacy efforts.

WHY RAISE MONEY AS A TEAM FOR 321FOUNDATION? It’s simple. It’s good to GIVE. Good karma just feels good…and...you will also GET BACK in return. Not only will you feel good for giving, but you will earn prizes for giving, too. It’s a win-win!

FUNDRAISING TIERS FOR “TEAMS”$250…..321foundation tshirt
$500…..321foundation hoodie (and the first prize)
$1k…....original artwork by an individual with DS (and the first 2 prizes)
$2,500…$100 iTunes gift card (and the first 3 prizes)
$5k…….32GB iPad (and the first 4 prizes)
$7,500…$500 scholarship* (and the first 5 prizes)
$10k……$1,000 scholarship* (and the first 6 prizes)
*Scholarship/convention must be approved by the 321foundation board.

Our goal is to get an iPad and educational scholarship in the hands of as many individuals with Down syndrome or other intellectual disabilities as possible...but your team does not have to be created for an individual with a disability. You may also gift your prizes in your name to individuals that could greatly benefit from them. This fundraiser is not tied to any geographic location so whether you live in Delaware or South Dakota, you can establish a team and fundraise. Give and Get Back.

To set up your “team” go to www.fundly.com/321educate and follow these easy steps…1. Scroll down on the right hand side of the page and click on “become a fundraiser”
2. At the bottom of the popup screen, click on “fundraise with an email”
3. Personalize with your info (the name you enter will be your fundraising name)
4. You will be redirected to a new screen which will allow you to personalize your fundraising page.
5. Share with your friends and start fundraising! It’s that simple!

Donations may also be directed via mail to:
321foundation
PO Box 1128
Bear, DE 19701
Please be sure checks have your team/name listed in the note section.

This fundraising campaign will be open through midnight EST May 31, 2014. Donations will be accepted after that date but will not be prize eligible. Prizes will be mailed by July 1, 2014.

New genetic cause for learning disability in Down syndrome identitfied

Neurons from a normal mouse (left) are longer and fuller than neurons from a mouse lacking SNX27 (right).

By Dr. Leila Luheshi from PHG Foundation:

Researchers have reported a novel molecular mechanism through which triplication of chromosome 21 could cause deficits in learning and memory in patients with Down syndrome.
Down syndrome is caused by the abnormal inheritance of three (rather than the usual two) copies of chromosome 21.  At a genetic level this leads to higher than normal levels of expression of the many genes and non-coding RNAs that are encoded on this chromosome.  Clinically this results in a complex constellation of symptoms of which the most prominent is a varying degree of learning disability.  Learning disability in Down syndrome is associated with reductions in the number and activity of the synapses (connections) made between neurons in the brain, and so understanding the mechanisms underlying these neurodevelopmental abnormalities may provide the key to ameliorating the effects of this disorder.

A new study in Nature Medicine reports that the protein encoded by the sorting nexin 27 (SNX27) gene, which is present at abnormally low levels in the brain of patients with Down syndrome, may underlie the presence of learning disabilities in this condition. 

The researchers showed, by knocking out the Snx27 gene in mice, that its expression is vital for brain development.  In particular they discovered that Snx27 is vital for the maintenance of synaptic activity and consequently for learning and memory, deficits in which underlie learning disability in patients with Down syndrome.  In a key experiment that linked these observations in mice more directly with the symptoms of Down syndrome in humans, the team were able to demonstrate that increasing Snx27 levels in a mouse model of Down syndrome could reverse the learning and memory deficits from which it is suffers.  

Oman Doctor’s column: Learners with Down syndrome

from The Week, Oman:
Children with Down syndrome are capable learners who are excited and eager to learn. They just need to be given the opportunity to excel. They may learn at a slower pace, but are more than capable of learning. They are strong visual learners. This means that they understand what they see better than what they hear.The average IQ for children with Down syndrome ranges from 25 to 80, whereas the average IQ for a Down’s Syndrome student is around 50. In children without a mental disability, the average IQ would be around 100.
Children with Down Syndrome have specific points associated with their learning development:They are visual learners.
They understand a lot more than they can say.
They are able to follow classroom rules and routines.
They need help to remember instructions - shorter phrases or visual clues.
They have the same feelings as any other child.
Teacher’s expectations of behaviour, attitude and ability need to remain high.
Children with Down Syndrome can learn. However, we need to make compromises so that their educational needs can be met in the classroom.  Since they are visual learners, teaching reading to students with Down syndrome should be characterised by a strong emphasis on visual learning. Visual demonstrations, pictures and illustrations can also be successfully used to assist in providing effective instruction in other subject areas of the curriculum. Lessons in phonics should be included in the curriculum for the student with Down syndrome.
The use of manipulatives and activity learning can be beneficial in the development of number concepts. The use of physical demonstrations and activities are important when teaching math concepts.
Students with Down syndrome generally demonstrate good social skills, which can be utilized to increase learning and teaching opportunities. When speaking to a student with Down syndrome, it is important to speak directly to them using clear language and short sentences. You should allow adequate time for the child to process what you have said and respond. Positive reinforcements should be used for students with Down syndrome to boost their self-esteem and positive learning experience. This should be done both at home and school.
Children with Down syndrome usually need special education services. These services are available in Oman.
These services may include:Special education sessions
Physical therapy
Occupational therapy
Speech therapy
Behaviour therapy

In the last ten years in Oman, things have changed drastically for children with Down syndrome. They are getting the opportunities they need to learn and to be a part of the community. There have been special schools opening as well as certain schools under the Ministry of Education starting programmes for children with Down syndrome. In some cases, they even work when they get older. They just need to be given the opportunity to show their talents and skills.
For more information on this topic, email your queries to Dr Kawthar Hameed al Balushi at health@apexmedia.co.om

Perscription for a Pet PigL "Twinkie" helps boy with Down syndrome

from Fox News:

A South Florida family went hog wild, after they were allowed to keep their pet.

"She calms him down when he's very agitated," said Heather Ray. "He does get very agitated easily. She helps as a calming effect to him. She gives him the acceptance that not all special needs people really get in our society unfortunately."

She is six pounds and totally house broken. She uses the kitty litter and is fully equipped with a tail that wags, and now she is an official emotional therapy animal for her pal Kason, who was born with Down Syndrome.

"I think that's the most important thing for me as a mother," said Ray, "To see him get that unconditional love and acceptance."

A dog or a cat were out of the question because Kason's dad has severe allergies. Miniature pigs however are hyper-allergenic.

Two months ago, the fight started at City Hall. "City ordinance does not allow pigs as pets," said City Attorney, Bob Goehrig. "Pigs are considered live stock."

Two months later, the threat of $500 a day fines is finally gone thanks to a doctor's prescription for a Juliana pig, Twinkie can officially stay.

Read more: http://www.foxnews.com/health/2013/01/24/pet-pig-helps-boy-with-special-needs/#ixzz2IvhXrnVr

The Perfect Toy for a Child with Special Needs

from Lisa of Differently the Same:
As a mother of a child with special needs, I’m always on the lookout for toys that will help my daughter.  This past Christmas as I was pushing my cart full of gifts through Toys ‘R Us, I stumbled upon one of the best toys for fine motor and cognitive development.  It’s called the Super Sorting Pie.  It comes with a colorful assortment of fruit, a pie divided up into sections and tweezers.  This activity is great because the tweezers are a bit of a challenge to pinch together, making it the perfect strengthening activity for those little hands.  It also teaches color and fruit recognition and can be used for introducing math concepts.  Math for my daughter has proved to be difficult since it is so abstract for her. When I find a toy like this that turns counting, making patterns, adding and subtracting into a grand game, it’s the ideal gift for my girl.

I know that my daughter, Megan has a tendency to get a little…..out-of-sorts, if you will, when new concepts are introduced which manifest themselves as a challenge.  Avoidance behaviors rear their ugly head and teaching her anything becomes next to impossible.  However, we all know, the more fun you make learning, the more engaged and willing children become.


It was extremely exciting watching Megan Christmas morning tear the Super Sorting Pie box right open!  She was more than eager to play with this terrific toy that would secretly teach her important concepts. Over the last month we have made countless pies together. Without any help from me, I have watched her successfully sort the fruit.  We’ve counted the fruit.  We’ve matched the colors.  We’ve learned how to pinch those tweezers real hard, giving her the tight grip needed on those little fruits so that she can pick them up and transfer them into the pie victoriously!

Megan is a girly girl and loves to pretend she is cooking.  ”Baking a pie”, in this case, a Super Sorting Pie, is pure entertainment in her recipe book for learning. You know what’s fabulous about this? She has no idea there is anything being taught because she is having such a pleasant time doing it!  As a result, no avoidance behaviors!  And no avoidance behaviors means she is open to what is being introduced.  Learning is happening!
It’s a win-win situation!
Smiles for all.

Lithium restores cognitive function in Down syndrome trial

by Paul Hamaker from the Examiner.com:
Researchers led by Laura Gasparini at the Istituto Italiano di Tecnologia in Genova Italy are the first to report the restoration of cognitive functions in Down syndrome mice using lithium in the December 3, 2012, issue of the Journal of Clinical Investigation.
Lithium has been shown to be useful in the treatment of several mood disorders in humans and is particularly affective in the treatment of bipolar disorder.
Mice are used in human brain disease studies because mouse brain chemistry is very close to human brain chemistry.
The Down syndrome mice were tested in tasks measuring contextual learning, spatial memory, and object discrimination before and after being treated with lithium. The mice demonstrated a marked improvement in memory function after treatment with lithium.
Remarkably the Down syndrome mice also showed restored neurogenesis (regrowth and rebirth of nerve cells) in the hippocampus. The hippocampus is directly associated with learning and memory.
Not ready for humans yet, this first success implies a significant improvement in the treatment of Down syndrome using a drug that is known to be safe for most people.
The most recent statistics from the Centers for Disease Control and Prevention that considered cases of Down syndrome in Alabama indicate an increased number of Down syndrome births by 8.4 percent. No defined cause has been found for the increase.
The research was reviewed at the Eureka Alert website the date of publication.

Prenatal intervention reduces learning deficit in mice

from Science Codex:
Mice with a condition that serves as a laboratory model for Down syndrome perform better on memory and learning tasks as adults if they were treated before birth with neuroprotective peptides, according to researchers at the National Institutes of Health.
Down syndrome results when an individual receives an extra copy of chromosome 21. According to the Centers for Disease Control and Prevention, Down syndrome occurs in 1 of every 691 births. Features of Down syndrome include delays in mental and physical development and poor muscle tone. These features may vary greatly, ranging from mild to severe.
The researchers studied growth factors that are important at certain key stages of brain development in the womb. Named for the first three amino acids making up their chemical sequence, NAP and SAL, are small peptides (small protein sub units) of two proteins. These two proteins enhance the ability of brain cells to receive and transmit signals, and enable them to survive. (NAP is an abbreviation for NAPVSIPQ and SALfor SALLRSIPA.)
The mice in the study had an extra copy of mouse chromosome 16, which has mouse counterparts to 55 percent of the genes on human chromosome 21.The researchers treated pregnant mice with NAP and SAL for five days, then tested the mouse offspring at 8 to 12 months of age, comparing them to mice treated with a saline solution (placebo). Mice with the extra chromosomal material that were treated with NAP and SAL in the womb learned as well as mice that did not have the extra chromosome, and significantly faster than mice with the extra chromosome that were treated with saline solution.
"Our study has provided important information that may help in the understanding of Down syndrome," said senior author Catherine Y. Spong, M.D., chief of the unit on perinatal and developmental neurobiology at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the NIH institute where the research was conducted.
Dr. Spong collaborated with first author Maddalena Incerti, M.D., Kari Horowitz MD, Robin Roberson, Daniel Abebe, Laura Toso, M.D., and Madeline Caballero, all of the NICHD Unit on Perinatal and Developmental Neurobiology. Dr. Incerti also is affiliated with the University of Milano-Bicocca, Italy, and Dr. Horowitz now is affiliated with the University of Connecticut, Farmington.
Their findings appear online in PLOS ONE.
In an earlier study, Dr. Spong and her colleagues found that, if treated with NAP and SAL in the womb, mice with the extra copy of chromosome 16, achieved developmental milestones earlier than did mice with an extra copy of chromosome 16 that had not been treated. In that study, the researchers examined developmental milestones for sensory, motor skill, and muscle tone development in the first three weeks of life.
"In our earlier work, we showed that treating the mice during pregnancy could prevent developmental delay as assessed with milestones," Dr. Spong said. "In this study, we showed that treatment with NAP and SAL not only puts the animals on a typical developmental trajectory, it also improves their ability to learn.
For the current study, pregnant mice received injections of the two protein fragments starting eight days after conception. This is equivalent to the end of the first trimester in a human pregnancy.
The researchers tested the learning skills of the mice when the animals reached adulthood. The mice were placed in a tank of water on a clear platform. The tank had symbols on each wall that the mice could use to orient themselves. Researchers then placed the mice directly in the water and timed how long it took them to locate the platform. With repeated trials, the mice become more adept at the task and take less time to reach the platform.
Over five days of testing, the researchers found that the time spent searching for the platform decreased substantially for all groups except the mice with the extra copy of chromosome 16 that were not treated with NAP and SAL in the womb.
The research of Dr. Spong's team is part of an NIH-wide focus on Down syndrome outlined in a 2007 Down syndrome research plan. The plan highlights research priorities for the field, including establishing a Down syndrome patient registry, which was announced Oct. 25, 2012.

Source: NIH/National Institute of Child Health and Human Development

Down syndrome and sleep

by Jamie Edgin and Lynn Nadel Special To The Arizona Daily Star:
The Down Syndrome Research Group at the University of Arizona conducts research to further our understanding and treatment of the cognitive dysfunction associated with Down syndrome.
Part of our research studies sleep, which is very important for learning. Sleep can be a problem for people with Down syndrome. Our laboratory is one of the few places in the world that studies sleep in people with Down syndrome.
One of our studies may determine how obstructive sleep apnea affects learning and behavior in people with Down syndrome. We anticipate illuminating links between sleep and cognitive deficits, thereby enhancing the possibilities for treating sleep disruption.
Our study has also had an impact on the public's awareness that people with Down syndrome may have problems sleeping. We offered a family in Phoenix an opportunity for their son to take part in the sleep study. As a result, he is now receiving treatment that has changed his life.
His mother, Leticia Avena, wrote about the impact of the study on her son's life:
"As a little boy, Isaiah would snore loudly and he always seemed tired and grumpy. His ENT suggested removing his tonsils and adenoids. After the surgery, we noticed some improvement with the snoring and breathing, but he was still tired and irritable."
After we tested Isaiah's sleep patterns with a method of monitoring the quantity and quality of sleep called polysomnography, we recommended that the Avena family follow up with his pediatrician and have a formal sleep study done.
"Isaiah was diagnosed with sleep apnea and prescribed a continuous positive airway pressure (cPAP) machine. Who would have thought that a little machine like that could make such a big difference!" his mother wrote.
"He no longer snores, he's happier and more alert, and we've been able to cut back on his medication for ADHD. We are very grateful to the DSRG. They have made a big difference in Isaiah's life, which has made our lives better, too."
The Down Syndrome Research Group also provides opportunities for people with Down syndrome to intern in our lab.
Sherine Rocha, a 20-year old woman with Down syndrome, is one of our interns. Her volunteer work helps support several research studies already under way in the lab, including one that develops tools to assess people's cognitive abilities. These tools will be used in studies to tell if a therapy has worked. Sherine and her family were excited to hear that possible treatments are being tested right now.
Success stories like these inspire us. In December 2011, the Down Syndrome Research Group and the UA College of Science established DSA CARES (Down Syndrome Arizona! - Clinical Care, Advocacy, Research and Education) to continue our research and to develop partnerships with the community.
Sherine and Isaiah are just two of the individuals with Down syndrome who have already participated and benefited from DSA CARES. This partnership is critical for obtaining the resources needed to support Arizonans with Down syndrome for years to come.
Our ultimate goal is helping everyone with Down syndrome maximize their potential.
About the scientists
Lynn Nadel is a University of Arizona Regents' Professor of psychology and a faculty member in the Cognitive Science Program. He is an expert in the functioning of the hippocampus, a part of the brain involved in memory that is the major target of neurological interventions in Down syndrome.
Jamie Edgin is a University of Arizona assistant professor of psychology and affiliated faculty of the Sonoran University Center for Excellence in Developmental Disabilities. She studies memory in typical development and in neurodevelopmental disorders such as Down syndrome.

Experience Science
• UA Down Syndrome Research Group: dsrg.arizona.edu
• Arizona Public Media story on sleep in Down syndrome: https://www.azpm.org/p/top-health/2011/6/27/1830-sleep-and-down-syndrome
• KJZZ radio interview: archive.kjzz.org/news/arizona /archives/201009 /Down_Testing

How to participate
To take part in these studies, contact Jamie Edgin at 520-626-0244 or jedgin@email.arizona.edu

Research Down Syndrome Announces 2012/2013 Grant Awards to Fund Down Syndrome Cognitive Research

by Research Down Syndrome:

Research Down Syndrome (RDS) has announced funding for six grants to support Down syndrome cognitive research. The grant total represents a fifty percent increase over grants awarded by RDS in 2011.

RDS is committed to supporting the identification of the causes of the intellectual impairments associated with Down syndrome and to facilitating the development of pharmacological therapies to improve memory, learning and communication in persons with Down syndrome. Encouraging progress has been made over a very short time. A human clinical trial was initiated in the fall of 2011, less than a decade after the support of private foundations stimulated the progress of Down syndrome cognitive research.

Research Down Syndrome, among the leading sources of private funding for Down syndrome related cognitive research, prioritizes funding towards programs with a high probability of readily contributing to the development of safe and effective therapies.  Continued private donations are needed to support the constantly expanding research efforts that will lead to potential medical treatments. The 2012/2013 RDS Research Grants include:

1. Johns Hopkins University School of Medicine:  RDS Research Center Grant entitled "A Down Syndrome Virtual Center for Basic and Translational Studies- Cognition and Therapies in Down Syndrome"    
2. University of California, San Diego School of Medicine:  RDS Research Center Grant entitled "Defining the Genes and Mechanisms Causing Neurodegeneration in Down Syndrome and Discovering Effective Treatments" - Pilot Proposal entitled "21Lab: A Collaborative Data Sharing and Data Integration Platform for the Down Syndrome Research Community"
3. University of Arizona:  RDS Innovation Research Grant entitled "The Neuropsychology of Down Syndrome"
4. Stanford University School of Medicine: RDS Innovation Research Grant entitled "Mechanisms Underlying the Roles of Sleep and Circadian Rhythms in the Learning Disability of Down Syndrome"
5. VA Palo Alto Health Care System: RDS Innovation Research Pilot Grant entitled "Improving Adrenergic Signaling for the Treatment of cognitive Dysfunction in Down Syndrome"
6. University of Texas, Austin:  RDS Innovation Research Pilot Grant entitled "Genetic Analysis of Excessive Inhibitory Signaling in Down Syndrome"

Detailed information on these grants can be found at: www.researchds.org

 

About Research Down Syndrome

Research Down Syndrome (RDS) is among the leading sources of private funding for Down syndrome related cognitive research.  RDS supports and funds Down syndrome cognitive research conducted at research institutions that are studying the basis of the intellectual impairments associated with Down syndrome, including Alzheimer's disease. Research Down Syndrome is a legal corporate entity, and is a 501(c) (3) nonprofit organization designated by the Internal Revenue Code.  For more information, go to www.researchds.org, or contact RDS:  info@researchds.org or 847.710.2251.

SOURCE Research Down Syndrome

Read more here: http://www.sacbee.com/2012/10/08/4892505/research-down-syndrome-announces.html#storylink=cpy

What you need to know about children with Down syndrome

by Anne Hart from Savannah Now:
When it comes to explaining her son’s Down syndrome to the general public, Wendy Tobiasz’s approach is refreshingly simple and downright honest: Joshua is “more alike than different,” she says.
“A child with Down syndrome is much more like you than different from you,’’ the Wilmington Islander said of her son, a first-grader at May Howard Elementary. “They love their family and friends and want to be loved back. They have things they are great at and things that are hard. They are funny, silly, energetic, naughty and sweet. They get their feelings hurt. They are proud when they accomplish something good. They get into trouble. They want to fall in love, have a job and live independently — and the list goes on and on.”
Which is why it makes so much sense that children with Down syndrome are in mainstream classrooms and playing mainstream sports. Many adults with the condition have jobs and live independently.
“If you feel it, struggle with it or want it, then someone with Down syndrome does, too,” Tobiasz said.
A photo of Joshua, 7, smiling in his karate uniform was among 200 chosen from 1,000 worldwide to appear in the New York City Buddy Walk Times Square video presentation this year. The video presentation will be followed by the NYC Buddy Walk.
The goals of the Buddy Walks — held in 250 cities nationwide in October, including Savannah — are to promote acceptance and inclusion of people with Down syndrome and to positively influence local and national policy and practice.
Despite huge efforts for public education about Down syndrome, Tobiasz said, unfortunately many antiquated stereotypes persist — including that children with DS can’t learn or “do” what typical kids do.
Her son and other children with DS daily shatter those stereotypes.
Joshua’s knack for sports — mainstream karate, basketball, T-ball, soccer — particularly helps to extinguish any misconceptions.
“People with DS are life-long learners,” Tobiasz said. “They may need adjustments in their learning style or to progress at a slower pace, but they can learn and ‘do’ just about anything.”

What parents need to know
In anticipation of the Seventh Annual Lowcountry Down Syndrome Society Buddy Walk Festival in Forsyth Park on Oct. 6, local parents of children with Down syndrome shared what they say parents of a child newly diagnosed with the condition need to know.
“First and foremost, they should be congratulated on their new gorgeous baby,’’ Tobiasz said. “Then they should simply love and care for him or her as any baby needs. The path they find themselves on isn’t the path they expected, but it is a beautiful and magical path. The emotions are overwhelming in the beginning, but rest assured that they will love their baby fiercely.”

Joe Marchese, a well-known local advocate for Down syndrome awareness, treasurer of the Lowcountry Down Syndrome Society and the father of three girls including Ella, who has DS, shared the following tips for parents:
1. Start speech therapy at 3 months old. “I know that they cannot speak, but the muscles needed for speech in the mouth and tongue need to be developed.” Always use a sippy cup with small round spouts.
2. Encourage swinging and spinning during play time. The sensory movements develop connections in the brain.
3. Communicate appropriate stages of development. For example, tell her grandmother that Ella will not walk until she is 3. Then when she walks at 2, it is a great success.
4. Teach your child sign language. Knowing where it hurts is a great help in making it better.
5. Find a doctor who loves all children.
6. Watch Aimee Mullins’ “The Opportunity of Adversity” on TED.com.

7. Stand firm on inclusion.
8. Remember that your child is perfectly made.

And I have to add: Join the Lowcountry Down Syndrome Society, because this group’s enthusiastic, informative and positive families are certain to be a huge support. Contact the Lowcountry Down Syndrome Society at ldssga.org or email jmarchese@ldssga.org

Little steps for a rewarding result

from the Hindu by R. Sujatha:

Several years ago, when Sujeet Desai visited the city, he performed exclusively for children with Down syndrome. The children were thrilled and the parents at the programme told me that there was hope, even for their children.

Sujeet’s mother told the audience how her son, who had Down syndrome, had discovered a new world, was independent and travelled around the globe for music performances. Sujeet spoke to the children and remained the star attraction on that day.

Last week, the Down Syndrome Association of Tamil Nadu organised a day-long workshop for 30 government school teachers, who were exposed to training methods of therapists from the United Kingdom. D. Sabitha, principal secretary of school education, inaugurated the workshop, and told the teachers that they would in turn, train their peers and colleagues. The aim is to address the needs of children in mainstream government schools, and those in residential centres.

Chronologically, the child could be a teenager, but may have the IQ of a pre-teen, explained Julie Hughes. Children with Down syndrome must be taught using visual cues, given their low attention span and their problems with hearing. Children often hear only the last syllables of a word and they have difficulty in retaining sound patterns in their memory. Suppose you have to teach the child the word ‘ball’. It would be better to use the word repeatedly in as many sentences as you can. So if you are too quick with the words, the child does not understand it.

Children with Down syndrome are at a higher risk for ear infections and hence have difficulty in hearing, ENT surgeon Mohan Kameswaran says. This leads to speech delays and unlike children without the condition, they are unable to understand verbal cues. “Hearing impairments and octological problems are found in 38 to 78 per cent of children with Down syndrome, compared to 2.5 per cent of other normal children. Such children must undergo audiological screenings at birth, and then every six months for three years,” Dr. Mohan said. However, appropriate evaluation and treatment can have a significant impact on the quality of life of children with Down syndrome, he added.

Down syndrome is a genetic disorder that affects one in 750 children in India, said Rekha Ramachandran of Down Syndrome Association of Tamil Nadu. The only way to ensure that such children are mainstreamed in schools is by training enough resource persons, she added.

When I asked her about Sujeet and his extraordinary achievement, she said independence comes with confidence in communication. In India we are still taking the first tentative steps towards teaching our children with Down syndrome to communicate. When this is achieved, we will have many Sujeets.

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

National Institute of Health looking for Participants

from babycenter.com:

 

Children with Down syndrome have a Story to Tell!

 

Researchers at the NIH are conducting a research study on brain development and learning in children and young adults with Down syndrome.  All procedures (including brain imaging, learning and memory testing) take about 8-10 hours, spread out over 3-4 visits, to complete on an outpatient basis at the NIH Clinical Center in Bethesda, Maryland.

Children and young adults may be eligible to participate if they are between 3 and 30 years old and have a confirmed chromosomal diagnosis of Down syndrome.  Volunteers will be compensated for their participation. Parent or legal guardian, child, and young adult must agree to participation. All clinical evaluations and research procedures are free of cost.

 

For more information, contact:

Nancy Raitano Lee, Ph.D. at 301-435-4520

TTY: 1-866-411-1010 

email: lnancy@mail.nih.gov 

http://patientinfo.nimh.nih.gov

http://patientinfo.nimh.nih.gov/DownSyndrome.aspx

 

National Institute of Mental Health, 

National Institutes of Health, 

Department of Health & Human Services 

Protocol No. 89-M-0006

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

iPads help students in special education learn

from The Daily Times by Jenny Kane:
Davie Jacobs sat at his desk while his teacher asked him to read the next page of a lesson on farm vegetables. He has Down Syndrome, a chromosomal disorder that delays physical and mental development.

A teaching assistant gently took his finger and directed it to an iPad on his desk. Davie's finger followed the sentence on the screen, the same one in his classmates' paper handbooks and, as his finger moved, a grown man's crisp, low voice recited the words.

"Potato," said the voice, as Davie's finger crossed over the boldly typed word accompanied by a picture.

If Davie could speak, he would not have the deep tone of middle-aged man, but for the time being, the man's voice is Davie's voice.

Davie is just one of the special education students in the district who is using iPad programs for both engagement and enablement. It is reflective of a growing interest in technology among those invested in special education.

This year, the Bloomfield school district distributed about 30 iPads to students in special education, an experiment that is becoming increasingly popular with school districts around the nation. Little research currently exists regarding the effectiveness of such methods, but the feedback from educators across the nation is positive.

"They think they're having fun and playing a game. I think they're learning," said Ehren Gieske, an occupational therapist with the district.

While not all special education students using iPads are without the use of their voice, many are reliant on those around them for either physical or mental assistance. Some use the technology to advance abilities that they have, and their curriculum is less centered on the technology.

Some students, for example, better learn coordination on an iPad because they can draw, but are not forced to hold a pencil to do so; they can use their finger. Others learn how to better articulate because the iPad can repeat back what it thinks students are trying to say, showing students what words or sounds they need to work on once they see which words were misunderstood.

"What I see is student empowerment," said Jennifer Martin, the district's communications specialist.

While many of the lessons are nothing new, the medium by which the lessons are taught is changing how educators look at the potential of students.

Davie, for example, likely never will be self-sufficient. However, with the iPad, his parents and teachers both take pictures of what he has done during his time with them. When Davie arrives at class or at home, he has a series of pictures of himself with explanations that relate what is going on in those photos.

While he is unable to type out the explanations or take the pictures, he is able to relay them to those around him by touching the screen.

"A lot of people think this is just for fun," said Martin, but she argues instead that the technology gives students such as Davie a means to communicate. Already, she said, he has his favorite programs, indicated by his tendency to click on specific programs more than others.

Additionally, the iPad is not the sole tool used to teach students, who still use tangible items such as books, puzzles and toys.

"It's not the end-all, be-all," said Gieske.

The district this year spent about $70,000 in stimulus funds on innovative technologies for special education, a pricetag that included the each of the $400 iPads and other items.

"We provide whatever would support our kids the best," said Lorna Bulwan, coordinator of student services for Bloomfield schools.

It will take several years before much data is available concerning special education students using iPads, but educators believe the qualitative evidence tells the iPads are helping the students retain knowledge and skills. Also, lessons can be taught more efficiently using the iPads, which work more quickly than the older technologies, teachers said.

"There's a lot of enthusiasm," said Bulwan.

Super Why reading and Umizoomi math learning apps

from PBS Kids:

Based on the popular preschool focused PBS show, Super Why! is a learning app that will teach your child to read without them realizing they’re learning. They'll be having too much fun.
— SheKnows.com

Help your child achieve the Power to Read with this collection of four SUPER WHY interactive literacy games. Your child can play along with each of the four main characters from the TV series: Alpha Pig, Princess Presto, Wonder Red, and, of course, Super Why, while practicing the alphabet, rhyming, spelling, writing and reading. Super Duper!

• Alpha Pig’S Lickety Letter Hunt - Help Alpha Pig find his way home by identifying the letters he needs to follow the alphabet path. That’s Alphabet Power!
• Princess Presto’s Wands-Up Writing - Help Princess Presto make objects appear by identifying letter sounds, tracing letters on the touch screen, and writing words. Spectacular Spelling!
• Wonder Red’s Rhyming Time - It’s time to rhyme! Help Wonder Red find the rhyming words missing from her Wonder Words Basket.
• Super Why’s Story Saver - Super Why...to the rescue! Help Super Why save the day by selecting words to complete sentences that fit the story.
• Learning Rewards - Collect virtual stickers along the way and decorate a “sticker book” with over 50 items.

from iTunes:

Team Umizoomi Math: Zoom into Numbers

Team Umizoomi, ready for action! Your child will use mighty math powers to explore Umi City, uncover hidden surprises, and play five Umirrific math games:

•Toy Store – A counting game
•Number Bubbles – A number identification game
•Race Around Umi City - A number comparison game
•Up! Up! And balloons! – An addition/subtraction game
•Rolling Toy Parade – A number line game

Each game teaches fundamental math concepts critical for preschoolers: identifying numbers; one-to-one number correspondence; rote counting; reading number symbols; associating symbols with quantity; and basic addition and subtraction. Games are leveled, and designed to increase in difficulty. Appropriate hints are provided to support your child as they practice and build their math skills.

Children will also earn badges and trophies through out the game. These badges and trophies are tracked in Team Umizoomi’s Headquarters and earning enough badges and trophies will grant kids a special key to Umi City!

With Milli, Geo, Bot, and your child’s mighty math powers, they can do anything! Welcome to the team, UmiFriend! Team Umizoomi: Zoom into Numbers includes:
•5 leveled games focused on fundamental preschool math skills
•Curriculum developed and reviewed by preschool education expert
•A rich, exploratory environment filled with surprises and added layers of math discovery
•Game instructions delivered by the voices of Milli, Geo, and Bot
•Player profiles that allow more than one child to play and save their progress
•Kid-tested appropriate games

new tool to support students with genetic conditions

from fosters.com:

Students across the country with genetic conditions like Down syndrome or sickle cell anemia will now be better supported in their educational, medical and physical development, thanks to a new website developed in part by the University of New Hampshire's Institute on Disability.

The website, Genetics Education Materials for School Success (GEMSS, www.gemssforschools.org), provides educators, other school personnel, and parents with a "one-stop shop" of useful tools and tips for support of students with genetic conditions throughout the school day. It was developed by the New England Genetics Collaborative (NEGC), a partnership of the Institute on Disability (IOD), the Institute for Health Policy and Practice, Dartmouth Hitchcock Medical Center and the University of Massachusetts Medical School.

Approximately one in every 20 children nationwide has a genetic or metabolic condition like Down syndrome, fragile X syndrome, sickle cell disease, or phenylketonuria (PKU). They most often are taught in general education classrooms, where teams of classroom teachers, paraprofessionals, service providers, and school nurses are charged with meeting their educational and health-related needs. Frequently, however, these school-based teams are ill-equipped to provide the best education or meet other needs of this population in the most meaningful ways, because of a lack of information on the rare conditions affecting these students.

"It was clear that a user-friendly resource on genetic conditions was much needed for those who work in education settings," said Monica McClain, NEGC project manager. "We were fortunate to be able to take advantage of expertise from our broad network to create a tool that will help support student success."

GEMSS provides practical guidance for educational teams in an easily-accessible online format. Each condition and its symptoms is introduced through a brief description in plain language. From there, site visitors can review strategies for addressing dietary and/or medical needs; special education supports; behavior and sensory supports; physical activity, athletics, school field trips, and other events; school absences and fatigue; and emergency planning.

"The GEMSS site is a wealth of information and a valuable asset to teachers and parents in helping them to develop comprehensive educational programs for children who have genetic disorders," said Laurie Lambert, a former New Hampshire general classroom teacher and special educator and inclusion facilitator. "This new tool fills the void of information that was previously available to schools."

New GEMSS content will be added over time and will depend upon readers' input through an online survey.

GEMSS was developed by the New England Genetics Collaborative, which is funded by Cooperative Agreement No. U22MC10980 with the Health Resources and Services Administration/Maternal and Child Health Bureau/Genetic Services Branch. For more information on GEMSS, visit www.gemssforschools.org.

Scientist tests promising drug on those with Down syndrome

from Health Canal:

A University of Colorado School of Medicine scientist is finishing a major clinical trial on a drug that could boost cognitive function in those with Down syndrome, significantly improving their quality of life and representing a potential milestone in research on this genetic disorder.

“We are hoping to enhance memory and learning in those with Down syndrome,” said Alberto Costa, MD, Ph.D., an associate professor of medicine and the neuroscientist leading the effort.

“We have been studying this drug for three years and are now ready to analyze the data on our trial. Our team at the University of Colorado and Children’s Hospital Colorado expects to have the results in the next two or three months.”

Costa, whose work was chronicled in last Sunday’s New York Times Magazine, (A Drug for Down Syndrome), is tested the drug memantine, currently used to relieve symptoms of Alzheimer’s disease, in 39 people with Down syndrome. About half received the drug and the others a placebo. In 2007, Costa demonstrated that memantine could improve memory function in mice with Down syndrome.

And now, for the first time, he is taking a drug effective in the treatment of learning and memory deficits in mice with Down syndrome and applying it to humans, a move described by the New York Times as “a milestone in the history of Down syndrome research.”

Costa is no disinterested researcher, his 16-year-old daughter Tyche – named for the Greek goddess of Fortune - has Down syndrome. Like others with the condition, she faces the specter of a steady decline in mental functioning as she gets older and a roughly 20 percent chance of getting Alzheimer’s in her 50’s. After that diagnosis, death is often just five years away.

“I feel I am racing the clock to find something that will at least keep her functioning at the level she is at now,” Costa said. “As they age, parts of their brain will shrink and their functions will diminish.”

Costa is actively pursuing links between Down and Alzheimer’s disease. He says babies born with Down often carry the biological markers for Alzheimer’s.

“They have the disease from the get go,” he said.

Costa says the world is awash in false assumptions about Down syndrome ranging from distortions on life expectancy to educational limitations. In fact, depending on the severity of their condition, those with Down can live into their 70s, attend college, live independently and hold down jobs.

 

“If we are successful, it will increase hope and expectations for those with Down syndrome,” Costa said. “Right now there are drugs for the signs and symptoms of medical conditions more frequent in those with Down syndrome, but nothing to improve brain function. In fact, the prevailing wisdom has been that there is essentially nothing you can do to boost memory and learning in this group. Hopefully, we can prove them wrong.”

But he and other Down researchers face an overall lack of federal funding, especially when compared to other diseases and disorders.

Costa has been supported by Forest Pharmaceuticals which is funding the clinical trial, the Linda Crnic Institute for Down Syndrome, the Coleman Institute for Cognitive Disabilities at the University of Colorado and the National Institute of Child Health and Development, part of the National Institutes of Health.

“Clearly these funding sources are the unsung heroes,” Costa said. “They may not get the attention or publicity but I can assure you that our efforts and the future of those with Down syndrome would be seriously compromised without their continued generosity.”