Successful Strategies for Beginning Readers with Down Syndrome

From DSRFCanada here is a very useful 30-minute video outlines their successful strategies for beginning readers and contains both practical ideas as well as footage of these ideas in practice. It is never too early or too late for learning to read and these strategies can be used with very young children to the adult learner.

New Research indicates Children with Down Syndrome need more therapy

Young children with Down Syndrome need more speech therapy. New research funded by the National Institutes of Health indicates that children with Down Syndrome may need more early intervention in vocabulary acquisition than other intellectually disabled peers.  In the study by Paul  J. Yoder & Tiffany G. Woynaroski, from Vanderbilt University, and Marc E. Fey & Steven F. Warren from University of Kansas, the children with Down syndrome had a greater delay in vocabulary acquisition than other children with Intellectual Disability not due to Down syndrome. While the authors were not able to prove that the children with DS could ‘catch up’, the study did show that the children with DS did benefit from five hours of intervention over one hour.

What is an IFSP or IPP?

You will meet with your Regional Centre counsellor to make a plan for services. This is called an IFSP or IPP. Here is a useful guide from Disability Rights, state appointed advocates.

For any parent of a child with Down syndrome, Professor Sue Buckley is awesome.

She presents a combination of inspiration, passion, rigorously tested empirical data and the wisdom that comes only from lived experience. Once you understand this, you listen. And every single thing she says makes perfect sense.

At the Down Syndrome Education Conference hosted by the DSFOC at UC Irvine in February, Professor Buckley spent a good part of the day sharing her data, practical advice and parental wisdom. She started with her life story and how she came to devote her career and much of her personal life to educating people with Down syndrome.

In 1987 Professor Buckley established a new charity Down Syndrome Education International based in the UK, In part as she needed programs to collect data from. DSE has developed a number of programs and resources. Most recently they have launched the Reading and Language Intervention Program. Professor Buckley has also been involved in the design of DSFOC’s Learning Program available in Newport Beach and through Club 21 in Pasadena and now Online for distant learners.

After completing a Bachelors degree in Psychology at the University of Reading in 1968, Sue Buckley was working as a clinical psychologist. At that time, as we know, most children with Down syndrome were institutionalized often at a young age and Professor Buckley worked with these children. She and her husband adopted a 15 month old baby with Down syndrome, Roberta, one of the institutionalized children that she was working with. And so began her adventure as a parent of a child with Down syndrome. But at that time things were very different. Children like Roberta weren’t even allowed to go to school in the UK till 1975 and then it was to a special school segregated from the general population. The special school didn’t teach Roberta much and there were many things she wouldn’t learn till she was a young adult. Sue Buckley shared so much of the wisdom gained as Roberta’s mother. Particular I took away the importance of treating people with Down syndrome as the age that they are. As an adult Roberta (she is now 43) has a life of her own, a boyfriend, goals and interests. She continues to learn and develop.

At the same time, as a psychologist, Professor Buckley became interested in the question of how the extra chromosome effected learning. She worked on developing the most effective early interventions, therapies and educational programs. Buckley has studied the development of language, literacy, numeracy, memory and cognition.

Emerging from her data came the realization that children with Down syndrome were better at learning when surrounded by typical peers. She worked towards getting children mainstreamed in typical classrooms but also collected the data that shows that it works. Today in the UK most children with Down syndrome are fully included. The model of inclusive education that she presented, with data to demonstrate its benefits is of great interest to those of us in California striving to achieve a similar placement.

Buckley was also an early proponent of teaching children with Down syndrome to read, at a time when they were not thought capable of learning to read at all by most professionals. In 1979 a letter from a father who had taught his daughter with DS to read using flashcards lead Buckley’s team to investigate teaching reading. Her research showed that teaching children with DS to read not only sped up their learning but also their speech and language.

This recent graphic shows just why reading is so important. It shows how different aspects of development are effected by DS adjusting for cognitive delay. Here are the strengths and weakness of the children with DS are compared with typical peers who have the same non-verbal mental age. The graph shows that children with DS have a specific speech and language delay – its not just part of parcel of underdeveloped cognition. It shows that learning from listening is a weakness and visual learning is a strength. It shows why teaching a child to read can actually help them learn to speak. But this profile is not set in stone; intervention can change it. By using strengths on the right side of the graph to develop the challenges on the left. For example Buckley said that grammar is a weakness even in spite of language delay and that this can be developed by learning vocabulary – and again best way to do that is by reading personalized books.

What struck me was that Buckley’s data tells us exactly the same as Terry Brown recommends. Reading is the key, words, flashcards, personalized books. DSE and DSE USA offer lots of materials and research – go online and explore.

One Extra Reason to Live, Love & Hope Gala Event

The 8th annual DSRTF Benefit in Southern California, One Extra Reason to Live, Love & Hope, is scheduled for November 2 at the home of Pelican Parts in Harbor City. Join SBDSA and Master of Ceremony Brett Walkow for an exciting, new take on an established opportunity to support the important work of DSRTF.

Please click here for your invitation and here to buy tickets onlineTickets are $75 on or before October 15, $85 on or after October 16. There is also an online auction at the bidding forgood website.

SBDSA Members will receive a $15 rebate after the event if the event covers its cost. To benefit from this discount you must send your membership dues of $30 to South Bay Down Syndrome Association, PO Box 2082, Manhattan Beach, Ca 90267-2082 by Nov 1st.

Attendees at this year’s event will enjoy a Las Vegas style casino with free chips and fabulous prizes, in addition to an established online and silent auction plus free-standing raffle. Dr. William Mobley, Executive Director of the UCSD Center for Down Syndrome Research & Treatment, will also be in attendance to answer questions about the latest in Down syndrome cognition research, as will select members of the DSRTF community.

Event Attire: Cocktail.


Celiac Disease and Gluten sensitivity

I’ve been doing some research on gluten since I put Magnus on a gluten free diet [Read more…]

More choline for pregnant, nursing women could reduce Down syndrome dysfunction, guard against dementia

More choline during pregnancy and nursing could provide lasting cognitive and emotional benefits to individuals with Down syndrome and protect against neurodegenerative conditions such as Alzheimer’s disease, suggests a new Cornell study of mice.

Cornell Chronicle_ Choline cuts Down syndrome dysfunction

Two Genes Identified for Congenital Heart Defects in Down Syndrome

A novel study involving fruit flies and mice has allowed biologists to identify two critical genes responsible for congenital heart defects in individuals with Down syndrome, a major cause of infant mortality and death in people born with this genetic disorder. In a paper published on November 3, 2011 in the open-access journal PLoS Genetics, researchers from the University of California (UC)-San Diego, the Sanford-Burnham Medical Research Institute in La Jolla, California, and the University of Utah report the identification of two genes that, when produced at elevated levels, work together to disrupt cardiac development and function. Down syndrome, the most common genetic cause of cognitive impairment, is a disorder that occurs in one in 700 births when individuals have three, instead of the usual two, copies of human chromosome 21. “Chromosome 21 is the shortest human chromosome and intensive genetic mapping studies in people with Down syndrome have identified a small region of this chromosome that plays a critical role in causing congenital heart defects,” said Dr. Ethan Bier, a biology professor at UC-San Diego and one of the principal authors of the study. “This Down syndrome region for congenital heart disease, called the ‘DS-CHD critical region,’ contains several genes that are active in the heart which our collaborator, Julie Korenberg, had suspected of interacting with each other to disrupt cardiac development or function when present in three copies. But exactly which of these half dozen or so genes are the culprits? Identifying the genes within the DS-CHD critical region contributing to congenital heart defects is challenging to address using traditional mammalian experimental models, such as mice,” added Dr. Bier, “since the number of possible genetic combinations that would need to be generated and tested is very large.” To simplify their search, the scientists turned to fruit flies, a simpler and rapidly reproducing biological system with many of the same genes as mice and humans. With help from collaborators Drs. Amir Gamliel, Geoff Rosenfeld, and Kirk Peterson at the UC-San Diego School of Medicine; Drs. Rolf Bodmer and Karen Ocorr at the Sanford-Burnham Medical Research Institute; and Dr. Julie R. Korenberg at the University of Utah; biologist Dr. Tamar Grossman in Dr. Bier’s lab devised a sequential genetic approach to untangle the problem. “First, fruit flies were used to test for all possible pairwise genetic interactions between these genes that might disrupt the function of the simple fluid pumping fly heart,” said Dr. Bier.” These comprehensive genetic studies pointed to a particular pair of genes known as DSCAM and COL6A2 that resulted in the most severe defects when over-produced together.” Then the researchers tested the effects of increasing the levels of these genes in the hearts of experimental mice. They first generated genetic lines of mice having elevated activity of each of these genes in the heart and then genetically crossed these mice to create offspring that over-produced both genes together. The parental mice as well as their offspring were then tested for heart function and visible heart defects. Mice having elevated levels of each gene separately were largely normal. But the offspring with extra levels of both genes suffered from severe cardiac defects. These heart defects were of two kinds. The first resembled one of the salient features of Down syndrome cardiac patients, in which blood shunts between the two atrial chambers of the heart through small holes in a septum that normally isolates these two chambers. The second defect, which is not frequently observed in Down syndrome patients, but is a common and very serious condition in the general population, was a thickening of the heart wall—referred to medically as cardiac hypertrophy. “Such thickening of the heart wall greatly reduces heart function and can lead to fatal heart attacks, which indeed was observed among some of the more seriously affected DSCAM and COL6A2 over-producing mice,” said Dr. Bier. He added that the tiered genetic approach, using fruit flies, then mice, could be useful in identifying genes involved in other common genetic disorders that are thought to be caused by multiple genes. “These conditions arise due to a surprising variation in the copy number of small intervals of human chromosomes that are carried by virtually all people,” Dr. Bier said. “Depending on which small regions of the chromosome have extra or fewer copies of genes, various conditions can result, including obesity, autism, and schizophrenia. Typically in these diseases, as in Down syndrome, the difficult puzzle is which of the possible genes with altered copy number are involved in causing the disease.”

A Drug for Down Syndrome

Great article of a doctor’s quest to find a drug to change the way his daughter lives.

A Drug for Down Syndrome