Brush and Spit! Helping Kids with Special Needs Keep Their Pearly Whites Smile-Ready

By Dr. Robert Rada, Illinois Dentist and American Dental Association Member from Disability Blog:
February is National Children’s Dental Health Month, yet many people fail to understand why dental health is so important for children.
Tooth decay is the most common, chronic childhood disease in the U.S. In fact, it’s five times more common than asthma. It causes kids to miss 51 million school hours and their parents to lose 25 million work hours annually. It also impacts children’s self-esteem, concentration and social development, so dental disease should not be ignored.
The good news is that simple things, like brushing your children’s teeth for two minutes twice a day and visiting your dentist regularly, can help greatly decrease the risk of painful cavities and other dental disease.
In children with special health care needs, regular brushing is also critical to help ease the effects that some medication may have on their dental health. Always supervise children while brushing to make sure they are using the right amount of toothpaste (and that they spit it out when done). Help them brush and make sure they’re not doing it too hard. To learn more about the right amount of fluoride toothpaste to use, visit MouthHealthy.org and read the section called, “Cleaning Your Child’s Teeth.” You can also watch this video to “brush up” on how to brush.

Eat. Move. Lose.

Photo contributed by Bay Area Hospital

from TheWorldLink.com:
Want to lose weight this year? Take some advice from Coos Bay’s Gregory Crew.
Eat less. Exercise more.
And no grilled cheese for breakfast.
Following that simple regimen, Greg lost 60 pounds in five months. And he’s just getting started.
Greg, 37, has Down syndrome. It’s a genetic disorder that causes lifelong intellectual disability and, in some cases, chronic health problems. He’s a cheerful soul who loves board games, Power Rangers movies and karaoke. He’s a former Special Olympian.
But pneumonia put him the hospital for a week last year. He has relied on an oxygen tank since then, and last summer Greg’s doctor delivered a life-changing verdict. At 5-foot-3 and 283 pounds, Greg had to shed some weight if he hoped to be healthy.
Linda Devereux soon became a prominent figure in Greg’s life.

When it’s harder to lose weight

from Times of Malta.com:
World Down Syndrome Day, celebrated last month, promoted a healthier and active lifestyle. Rosette Gatt takes a look at how the physiological and behavioural aspects of this condition place these individuals at an increased risk of obesity.
Down syndrome, a genetic condition that causes delays in physical and intellectual development, occurs in one in every 800 live births and is not related to race, nationality, religion or social status.
The condition carries various health complications, but with appropriate medical care and an active lifestyle, most individuals can lead healthy lives. Nowadays the average life expectancy of individuals with Down syndrome is 55 years, with many living into their 60s and 70s.
Early childhood intervention, screening for medical problems, a sound and caring family environment, proper individualised education programmes and a supportive community can all improve the quality of life.
Unfortunately, recent research shows that between 30 and 50 per cent of children with Down syndrome are obese. Specific associated health and behavioural concerns in the individual with Down syndrome foster the development of obesity. A prevention and management plan thus needs to be mapped out for each individual to avoid negative consequences.
Weight gain in people with Down syndrome is a consequence of:
• physical characteristics, mainly short stature and hypotonic musculature also affecting ligaments, joints, hips, knees, pelvis and the spine;
• health concerns such as cardiac defects, thyroid function disorders, a decreased basal metabolic rate, gastro-intestinal tract anomalies, sleep apnea and sight defects;
• an inadequate diet because of dental problems, poor oral musculature and oral sensitivity;
• behavioural difficulties such as oppositional behaviour, impulsivity, negativity and non-compliance.

3rd World Down Syndrome Day Conference, 3/21 UN Headquarters NYC

REGISTRATION NOW OPEN AND FREE OF CHARGE – REGISTER ONLINE HERE TODAY

We urge you to come along in person to the 2014 WDSD Conference to show your support and to help us to represent people with Down syndrome with a single global voice at the United Nations!

Down Syndrome International is delighted to announce that the 3rd World Down Syndrome Day Conference, based on the theme "Health and Wellbeing - Access and Equality for All" will take place at United Nations Headquarters in New York, USA on 21 March 2014 in the Economic and Social Council Chamber from 1.30pm-6pm.

Confirmed speakers include:

Dr William Mobley - United States - Distinguished Professor, Chair of the Department of Neurosciences and Executive Director of the Down Syndrome Center for Research and Treatment at UC San Diego and the Florence Riford Chair of Alzheimer Disease Research.

Dr Yvonne Maddox - United States - Deputy Director, National Institute of Child Health and Human Development at the National Institutes of Health and Chair of The Down Syndrome Consortium.

Dr George Capone - United States - Director of the Down Syndrome Clinic and Research Center (DSCRC) at Kennedy Krieger Institute and Member of Down Syndrome Medical Interest Group- USA.

Dr John Mayer - United States - Professor of Surgery, Harvard Medical School, Past Chair, Society of Thoracic Surgeons, Cardiac Surgeon, Boston Children’s Hospital.

Special Olympics/UNICEF - "Healthy Athletes" Health Screening and Intervention Program for Children with Intellectual and Developmental Disabilities.

Professor S Suresh - India - Chief Medical Director, MediScan Systems, Chennai, India.

Sheila Heslam - United Kingdom - Services Director, Down's Syndrome Association, presenting with self-advocate Sara Pickard on new Adult Health Book for people with Down syndrome to use with their medical practitioners, prepared in consultation with people with Down syndrome, their families and doctors.

Efficacy of selected treadmill training programme on oxidative stress in adolescents with Down syndrome

from the Eastern Mediterranean Health Journal and the World Health Organiziation:

ABSTRACT The aim of this study was to assess the efficacy of an electronic treadmill exercise training programme on malondialdehyde (MDA) as a marker for lipid peroxidation and the antioxidant enzyme glutathione peroxidase (GPx) in adolescents with Down syndrome. The study was carried out on 30 adolescent males with Down syndrome, ranging in age from 15 to 18 years, with 30 healthy subjects as a control group. Clinical examination, anthropometric measurements and determination of GPx activity and MDA before and after exercise were done. A treadmill training programme was performed for 12 weeks. Our data showed a significant increase in GPx activity and decrease in serum level of MDA in Down syndrome individuals after treadmill exercise for 3 months. Exercise promotion for adolescents with Down syndrome requires attention to motivators and facilitators of exercise adherence as it may limit risk of increased neurological consequences associated with oxidative stress and improve quality of life.

Could it be a 'cure'? Breakthrough prompts Down syndrome soul-searching

from JoNel Aleccia from NBC News Blog:
In the 14 years since her daughter, Rachel, was born with Down syndrome, Jawanda Mast has always been clear that she’d change the condition if she could.
“I couldn’t love her more, but I would give almost anything to take away that extra chromosome,” the Olathe, Kansas, mom wrote on her blog. “While I may know she’s perfect, the world doesn’t.”
But when Massachusetts scientists announced recently that they’ve found a way to silence the chromosome that causes trisomy 21, also known as Down syndrome, it rocked Mast – and the rest of the disability community.
“It’s so hard to imagine you could actually do that,” Mast told NBC News. “Yes, I would take away the challenges, I would take away the health risks. But now I also stop and say, ‘Oh my goodness, how would that impact the rest of her?’”

Vallejo woman determined to be healthy, loses 200 pounds

by Irma Widjojo from the Times-Herald:
Gone are the days of super burritos, pepperoni pizzas and cheese nachos.
Angelique Nabours went from 324 pounds to just a little more than 130 within a few years. The 39-year-old woman was born with Down Syndrome and had a lifelong weight problem -- until a few years ago when she had a seizure. "That really scared me," her mother Anne Nabours said. "We are still not sure what caused the seizure, but her weight had a lot to do with it." Angelique then moved into a major lifestyle change, including starting a diet and exercise regimen. In a little less than two years, she has lost nearly 200 pounds. "I work out every day," she said. "I feel fine, and I have more energy." The Vallejo woman works out either at the gym, or at home on her cardio machines while watching her favorite daytime talk show, the Ellen DeGeneres Show. In fact, Anne Nabours had the idea to call the Times-Herald about her daughter's journey after a comment she had made while watching a recent episode of the popular show. Angelique was exercising on her Air Walk when the show was featuring a winner of the popular weight-loss competition show "The Biggest Loser" who had lost about 100 pounds. "She stopped dead in her tracks and said, 'Hey, what about me?! Check it out!' " Anne Nabours said. "And I thought, that's right. She does deserve recognition." Anne Nabours said their goal was to get Angelique to 140 pounds. She reached the goal about a year ago, lost a little more, and has never weighed more than 140 since.
"She's such an inspiration," her mother said. "What's amazing is that she's doing it all on her own, and she keeps (the weight) off. It's her own determination." Angelique Nabours also meets regularly with a nutrition management consultant from Kaiser Permanente Vallejo Medical Center. She said she misses all of her favorite foods, which have now been replaced by vegetables, fruit and other healthier choices. "I still like them, but I know they are bad for me," she said. However, she's more excited about her whole new wardrobe. Due to her weight loss, she dropped 16 dress sizes and is now a size 10. "I can now wear cute, skinny clothes," she said. Her healthy habits also affected her parents. "I used to be a smoker, and I had to quit. That was hard," her father Ed Nabours said. "But what she's doing is ever harder." Angelique Nabours' simple advice to other people trying to lose weight is: "Don't give up." Contact staff writer Irma Widjojo at (707)553-6835 or iwidjojo@timesheraldonline.com. Follow her on Twitter @IrmaVTH.

Exercise has Cognitive Benefits for People with Down Syndrome

by Carola Finch from Examiner:
Researchers at the University of Arizona (ASU) are conducting research to determine whether assisted and intense exercise can improve the emotional, cognitive and motor functioning of adolescents with Down Syndrome (DS). The aunt of Marcus Santellan, a young man with DS, says that since he has participated in the exercise program, he is speaking in longer sentences and is more talkative in his home.
Marcus is one of eight participants who are working out on a bike three times a week at ASU’s campuses in Tempe and Downtown Phoenix. Eight participants have already been studied by researchers.
Katy Lichtsinn, an ASU kinesiology senior, cheers on and mentor Marcus. When she warned Marcus’s aunt that he may be tired after pedaling 110 rpm on the bike, Marcus responded: “I’m not tired but I can’t feel my legs.”
Down Syndrome is a chromosomal condition that affects approximately 400,000 children born in the U.S. DS children have physical characteristics and cognitive difficulties that limit their lifeskills. Only a few behavioral interventions have improved their ability to function.
Shannon D.R. Ringenbach, an associate professor of kinesiology in the School of Nutrition and Health Promotion, intends to show that Assisted Cycle Therapy can potentially help improve the lives of people with DS.
Two years ago, Ringenbach conducted a smaller pilot study that adolescents with DS improved their manual dexterity and increased the speed at which they processed information. Researchers did not achieve the same results after one voluntary exercise session because people with DS have less strength and tend to be sedentary.
A specialized stationary bicycle with a motor was used so that participants could exercise at a faster rate. Approximately 15 ASU undergraduates and one doctoral student closely monitored the participants and encouraged them. Participants were tested intermittently for depression, and on their manual dexterity, ability to function, and cognitive skills.
“It’s really remarkable that by doing this kind of exercise, they begin to think faster,” says Ringenbach. “We believe they develop new brain cells. We don’t know yet how long it will last. But it has the potential to dramatically change the quality of their lives. With early intervention in children with Down syndrome, it’s possible it could improve their IQ.”
The families of the participants say that the adolescents are enjoying the program, talking and interacting more with others, and have improved their mood. Ringbach hopes to extend her research by creating a motorized bike for smaller children

is Miralax bad for you?

by Catherine Saint Louis from The New York Times:

Since it was first introduced 13 years ago, a drug called Miralax — an odorless, tasteless laxative that can be easily diluted in orange juice or water — has become a staple in many American households.

But the way many families use Miralax and its many generic equivalents has strayed far from its original intent. The Food and Drug Administration approved the drug for use only by adults, and for only seven days at a time.

Instead, Miralax has become a long-term solution for childhood constipation — a problem that can be troubling not just physically, but also emotionally — rather than a short-term fix so that parents can change their children’s diets to include more fruits and vegetables.

“I’ve had kids on it daily for years,” said Dr. Scott W. Cohen, a pediatrician in Beverly Hills, Calif., adding that he will generally refer them to a specialist in prolonged cases. For children with chronic constipation who are not being helped by dietary changes, “We literally give it like water.”

No studies have shown that the drug’s active ingredient — polyethylene glycol 3350, or PEG — has severe side effects. But there is a growing chorus of questions about why it has been used and prescribed for children for so many years.

Last week, for example, the Empire State Consumer Project, a New York consumer group, sent a citizen petition to the F.D.A. on behalf of parents concerned about the increase in so-called adverse events related to PEG that health professionals and consumers have reported to the F.D.A. over the past decade.

The warning label on Miralax does not reflect a known risk to children. It means only that no long-term studies that meet the F.D.A.’s standards have been conducted on children using Miralax and its generic counterparts, which work by drawing water into the colon. However, discussion groups on many Web sites suggest that thousands of parents have questions and concerns about it, including the effects of long-term use.

Babies with Down Syndrome Living Longer, But Disparities Still Seen with Black Infants

from Afro.com:
The occurrence of Down syndrome and the number of fatalities related to the condition have decreased among American children, according to a new study. However, Black children with Down syndrome remain twice as likely to die.

A study published in the medical journal Pediatrics tracked 16,506 infants, born between 1983 and 2003 in 10 different sections of the country. Researchers found that survival rates in the first month of life have remained relatively steady, but the rates of survival to ages 1, 5, and 20 have all increased.

However, a disparity remains between survival rates of White and Black children with Down syndrome.

“The survival of children born with [Down syndrome] has improved and racial disparities in infant survival have narrowed,” said the report, published in December. “However, compared with non-Hispanic White children, non-Hispanic Black children have lower survival beyond infancy.”

According to information from the Centers for Disease Control and Prevention, African American infants with Down syndrome are twice as likely to succumb to complications related to the condition.

Children born at 3.3 pounds or less, which can occur naturally or as a result of smoking while pregnant, are 24 times more likely to die.

Heart health also plays a major part in survival rate, according to the Pediatrics report.

“Congenital heart defects are a significant risk factor for mortality through age twenty,” the study found, putting the increased risk at five times that seen with children born without the condition.

Humans typically have two sets of 23 chromosomes, or a total of 46 gene pockets that control development both inside and outside of the womb, according to the CDC. 

Children with Down syndrome, however, have a total of three copies of the chromosome 21, which can affect how a child develops mentally and physically. Roughly one infant out of every 700 born will have Down syndrome.

While there is no way to prevent the development of Down syndrome, having a baby after age 35 dramatically increases the risk of giving birth to an infant with the condition, according to the American Congress of Obstetricians and Gynecologists. The organization strongly recommends that every pregnant woman make use of the tests available to determine risk of the syndrome and other chromosomal disorders, no matter what their age. The tests include ultrasounds should be taken within the first 20 weeks of every pregnancy.

According to the organization, blood tests and specific ultrasounds can show doctors early warning signs for Down syndrome by getting accurate readings on the “thickness of the neck and back area,” one indicator of the presence of the condition.

Yoga for Girls with Down Syndrome

from the Windsor Star by Kelly Steele:
For Windsor’s Nicole Daignault, teaching yoga is more than just poses and deep breathing. It’s a chance to share her love with others.
That’s why Daignault started Yoga for Exceptional Girls at Windsor Squash and Fitness Club. The class is geared to girls 12 years of age or older who have Down syndrome. Daignault, who goes by the nickname Coco, admits she is excited to see the girls and women sharing her love.
“It’s the first time I’ve done something specific to a special-need group,” she said. “However, over the years I’ve had the pleasure of having several people come into my classes with various special needs. I’ve taught wheelchair-specific yoga, people with Down syndrome, multiple sclerosis and quite elderly people.
“I really love to do those special group classes where they come to realize that yoga isn’t just all about these big fancy moves, but that everyone can do it,” she said. “It’s inspired me over the years to work with those groups.”
It was a class Daignault taught this summer that got the wheels turning.
“One girl who participated in the group class had Down syndrome,” she said. “She did everything. I was very inspired by that and she never left my mind.”
When she returned from vacation, the owners of Windsor Squash and Fitness asked Daignault about her plans for the yoga program.
“I knew I wanted to work with this group,” she said. “I know what it’s like to be a 12-plus girl and I know what it’s like to be a 12-plus girl with physical problems.”
Daignault was born with scoliosis, an abnormal curving of the spine which has caused a lot of pain and problems over the years. She also has leg-length discrepancy, which caused her to walk with a limp into her early 20s.
“People with Down syndrome seem to have overly unstable joints,” she said. “So the yoga is, for them, much more for the strengthening and stabling of their joints. They are very flexible. But the feet, knees, hips need stabilizing, and add on slower metabolism and weight gain, it just exacerbates what’s going on.”
Studies have shown yoga is beneficial for people with Down syndrome because it helps them improve muscle tone, flexibility and balance while promoting a sense of inner peace. Yoga poses may also help internal organs and rejuvenate the endocrine glands. Simple breathing exercises may help calm and restore the nervous system.
For children with Down syndrome, yoga helps bring body awareness and increases concentration and memory skills.
“I tweak what I normally do in my classes,” said Daignault, who’s been teaching for 13 years. “One thing I bring into the class for them is rhythm. Keeping consistency for people with Down syndrome is also important. They need regular routines and patterns.
“We have a set pattern as to what we will be doing. The poses may change a bit. But we will be starting the classes off with drum beat rhythm to help them get the beat of their breathing. Less on the flexibility, more on the strengthening and stability.”
Sound therapy includes chanting, mantras and drumming. Sound vibrations have healing qualities and children respond readily to any activities involving instruments or singing. For that reason, Daignault incorporates the drum beats into her program.
She has six people in her class, ranging in age from 14 to 22, and everyone seems to be embracing yoga.
“There are always obstacles, everyone has their own internal problems,” she said. “Balance is a problem. They will go to the wall to balance themselves.”
Daignault loves sharing her skills with the class. “Yoga builds community in general, ” she said. ” People make friends and you start to get involved in the yoga community. My hope is that not only do they build nice friendships here but I’d love them to ultimately have the basics they need to go into any yoga class.”
For more information, visit windsorsquash.ca
ksteele@windsorstar.com

Adult Down syndrome center a passion, and ‘a blessing’

by Eileen Daday from the Daily Herald:

Dr. Brian Chicoine of Arlington Heights was among the more than 10,000 runners who ran the Chicago Marathon for charity. But he was the only one to run it for the Adult Down Syndrome Center in Park Ridge.

It was the sixth time Chicoine ran the marathon for the center and over the years he has raised more than $300,000 for its programs. This year alone, he raised $20,000 and money continues to come in.

The Adult Down Syndrome Center is the only one of its kind in the Midwest and is a program offered by Advocate Lutheran General Hospital and its medical group.

Last week, Chicoine and his staff hosted an open house at their newly completed facility, located just west of the hospital.

While the facility has been open since late April, they waited until October, known nationally as Down syndrome awareness month, to open its doors to the public.

What started 20 years ago with Chicoine seeing patients two mornings a week has evolved into a full time center that offers a holistic approach to meeting the medical and psychosocial needs of its clients.

Since its inception, more than 5,000 patients have been served and it now treats 2,000 individuals per year.

Foods for children with Down syndrome

By Jacqueline Silvestri Banks from Fox News:

In today’s three part series on diets for special needs, we will be taking a look at Down syndrome. Children with Down syndrome are at a higher risk than the general population for certain health concerns.
Eating nourishing foods can help reduce some of the physical symptoms and increase overall health. Brain physiology and common health symptoms will be covered first, followed by important foods to include in their diets and which foods to avoid and why.
Down syndrome is categorized as a condition in which a baby is born with an extra chromosome. According to the CDC the extra copy of chromosome, number 21, changes the brains normal development, causing mental and physical problems.
Information in the brain is transferred between neurons (synapses). Research has suggested that in Down syndrome the structure and function of the synapses are abnormal, causing cognitive defects.  It has been hypothesized that this abnormality is caused by one or more of the genes on the extra chromosome.
Reduced brain volume and smaller volumes in frontal and temporal lobes as well as the cerebellum also affect those with Down syndrome.
The American Academy of Pediatrics’ Committee on Genetics has noted that those with Down syndrome are likely to develop certain health problems. This is thought to happen as a result of body structures not developing normally.
Children with Down syndrome are likely to be overweight and have a higher risk of obesity. They burn calories at a slower rate and are frequently diagnosed with an under-active thyroid which can contribute to weight gain.
Gastroesophageal reflux disease (GERD) is common among children with Down syndrome.  Symptoms include heartburn, sore throat, regurgitation and chest pain.
Gluten intolerance and celiac disease is also widespread and can lead to nutrient deficiency and an impaired immune system if dietary needs are avoided.  
Finally, periodontal disease becomes prevalent in adulthood so it is important to establish habits to eat foods that will decrease its likelihood.
To keep obesity at bay, feed children nutrient dense foods and limit junk food without nutritional value. A good rule of thumb is to eat ‘real food’ found in nature, and avoid man-made ‘food’ as much as possible.
Include healthy fats such as coconut and olive oil and even organic, pastured, butter containing butyric acid and omega 3 fatty acids.
For an under-active thyroid, an excellent choice is iodine rich seaweed. Seaweed snack packs are great for lunch boxes and kids love the salty taste. It can be used in salads, sprinkled on other food or used as a wrapper for healthy snacks.
Foods rich in vitamin C may help keep periodontal disease at bay. Citrus fruits (for those not suffering from GERD), strawberries, green peppers and broccoli are great choices and make easy finger foods.
Anti-microbial foods such as garlic, onion, thyme, oregano, tarragon and cinnamon are great to use on a regular basis to help kill bacteria that lead to tartar and plaque buildup.
Trigger foods for GERD should be avoided. Common culprits are citrus fruits and foods high in sugars and fat including chips, brownies, cookies, creamy dressings, ice cream, fatty cuts of meat, fried chicken nuggets and french fries.
A food journal is a useful tool for tracking any symptoms; this will help pinpoint exactly which foods to avoid. It will also help track any correlation between gluten and symptoms of celiac disease (diarrhea, stomach aches, bloating, irritability, skin rashes and mouth sores). Carefully read all food labels since gluten can lurk in unsuspected places such as soy sauce and remember that ‘wheat free’ does not mean gluten free.
Because there is an especially high incidence of celiac disease among those with Down syndrome, I suggest avoiding the introduction of gluten containing foods until at least the age of 18-24 months when a child’s digestive system is more developed.
These guidelines will help create a great nutritional foundation. As children with Down syndrome grow and gain independence, they will have the right tools to make good choices on their own.
For older children with established eating habits, start by making small changes to their diet. Making a complete change overnight is likely to lead to resistance and fade quickly, but subtle changes over time will make it easier on the child and the rest of the family to adjust to new eating habits.

Nurse’s intervention helps obese child with Down syndrome

from Nurse.com by Lois Gerber, RN, BSN, MPH:

The nurse practitioner at the health department handed me a new referral. "Evan’s a healthy 6-year-old with Down syndrome," she said. "No cardiac problems. He’s short with a body mass index at the 90th percentile. Can you make a home visit?"

Two days later I was sitting in the family’s apartment talking with Leslie, Evan’s mother, a stocky middle-aged woman wearing khaki slacks and a white T-shirt.

Dressed in a navy sweatsuit, Evan sat in the corner of the room in an oversized children’s rocking chair watching Sesame Street on television. A box of Cheez-Its sat on the table beside him.

Piles of men and women’s clothes were stacked on top of a sewing machine by the back wall. "I alter people’s clothes," Leslie said. "I have to work. We need the extra money."

I smiled at her. "Let’s talk a bit."

"There’s nothing a nurse can help with," she said. "Evan’s doing OK. So what if he has a little baby fat?"

"He’s really not a baby anymore," I said.

Leslie swallowed hard. "You don’t know what it’s like. I’m here every afternoon with him. Mornings, too, when he doesn’t go to school." She sighed. "Evan sits watching television while I sew. He loves to rock and eat. I know it’s bad for him but … ." Tears filled her eyes.

I learned Leslie and her husband, Sam, felt overwhelmed with caring for their son even though they’d adjusted to the fact that he would always have developmental challenges. Sam worked long hours as a security guard and was emotionally detached from the family.

Although toilet trained, Evan had poor muscle tone and a lumbering gait and was prone to upper respiratory infections. His tongue protruded slightly. Developmentally, he functioned as a 3-year-old.

On another home visit, I said, "Obese children tend to have weight problems all their lives."

Leslie smoothed her T-shirt over her stomach. "What else can I do?"

"Let’s write down some ideas," I said. "You first — something you think could help."

"Not giving him Snickers bars after supper."

"Good idea," I said.

Together, we developed the care plan. She agreed to complete a three-day food diary, including snacks, which showed the family’s regular meals contained too much bread and dairy and not enough fruits and vegetables.

I tailored my teaching to the family’s food preferences and eating style. The goals were for Evan to maintain his present weight until it fell within the normal range for his age and to eat foods daily from each of the major food groups.

Leslie agreed to a referral for food stamps, allowing her to purchase more fresh fruits and vegetables. I taught her healthier food choices using pamphlets with heart-healthy recipes. She prepared more low-calorie, low-fat meals with fruits, vegetables and whole grains.

To encourage Evan’s physical activity, Leslie enrolled him in an afternoon playgroup for developmentally delayed children. On Saturdays, the family shopped for groceries together. The parents compared food labels and let Evan participate in the final selections. Leslie declined referrals to a nutritionist and the National Association for Down Syndrome, but agreed to save the phone numbers for future reference.

On my last visit, a smiling Evan met me at the door. Leslie had limited his television watching to two hours a day and replaced his candy and cookie snacks with granola bars or small dishes of dry cereal and raisins. Instead of buying milkshakes at fast food restaurants, she prepared them at home with skim milk and fruit juice.

"Sam and I are losing weight," Leslie said proudly. "We have more energy and feel more like a family now."

Nurses must be creative and look beyond the obvious to find long-term solutions to complex health problems. Referrals to community resources broaden the family’s base of support and increase the likelihood that care plan goals will be met and maintained.

Fantastic Speakers lined up for the CDSS Conference 5/18-5/20

From the CDSS:

The 2012 Canadian Down Syndrome Conference is May 18-20 in Toronto.

Remember to register for the conference if you haven't yet - spots are filling up fast. We hope to see you there!

• You can also download the 2012 Conference Preview brochure. Included in the brochure is more information about the conference, including a short list of sessions!
• Download it here: 2.3 MB (PDF file)
• If you have any questions or concerns please email lyng@cdss.ca

Keynote and Endnote Speakers

Our Keynote Speaker: Marlee Matlin

Academy Award winning actress, author, mother, and advocate.

Marlee Matlin received worldwide critical acclaim for her motion picture debut in Paramount Pictures’ Children of a Lesser God, earning her the Academy Award for Best Actress. At age 21, she became the youngest recipient of the Best Actress Oscar, making her one of only four actresses to receive that honour for a film debut. In addition to the Oscar, Matlin was honoured by the Hollywood Foreign Press Association with the Golden Globe Award for Best Actress in a Drama.

Passionate about children, she has also appeared in a number of educational and children’s programs. She can currently be seen starring in Disney’s highly acclaimed Baby Einstein DVD series, teaching sign language to infants and toddlers.

Matlin currently serves as a National Celebrity Spokesperson for the American Red Cross, encouraging Americans to donate blood. She has worked on behalf of closed captioning and was instrumental in getting Congress to pass federal legislation requiring all televisions manufactured in the United States be equipped with closed captioning technology. She also serves on the boards of a number of charitable organizations including Easter Seals, The Children Affected by Aids Foundation, as well as those charities which primarily benefit children. In 1995, Matlin served as Chairperson for National Volunteer Week and was honored in a White House Rose Garden ceremony by President Clinton. In 2006 Matlin was honored by AOL as “Chief Everything Officer,” highlighting the important contributions of mothers, both home and work environments.

Our Endnote Speaker: Dr. Dave Williams

Astronaut, medical doctor, and parent advocate.

With a passion for healthcare and risk management, prior to entering the Canadian Space Agency's program, Dr. Dave Williams worked as an emergency room doctor and later as director of emergency services at Sunnybrook Health Sciences Centre in Toronto. Formerly the director for the McMaster Centre for Medical Robotics, where he led a team dedicated to developing innovative technologies to assist the development of local and remote patient care. July 2011 marked a new journey for Williams as he became President and Chief Executive Officer of Southlake Regional Health Centre.

Dave Williams joined an exclusive club when he blasted into space aboard the Space Shuttle Columbia, and again on Shuttle Endeavour where he walked out into the great beyond. Having also lived and worked in the world's only underwater ocean laboratory, he became Canada's first dual astronaut and aquanaut.

A true Canadian hero, Williams is down-to-earth with a compelling and unique approach to peak performance, environmental stewardship, our futures and risk management.

2012 Speakers and Sessions

Sessions in Red are Self-Advocate Friendly

Sessions in Blue are Self-Advocate Only

1. Sara Bingham: Enhancing Language and Lessening Frustration
2. Emily Bolyea-Kyere: An Introduction to the Best Buddies Friendship Program
3. Patrice César: Film Presentation: Trisomie 21 Défi Pérou (translated title: Up with Downs: The Peruvian Challenge)
4. Dr. Brian Chicoine: Promoting Health for Adolescents and Adults with Down Syndrome
5. Jim Cochrane: Step by Step- A Lifetime of Transitions 
6. Joe Dale and Mark Wafer: Employment Options for Adults Who Have a Disability
7. Maria Dellapina, Specs 4 Us: Children's Vision Awareness for Parents and Guardians
8. Sujeet Desai: My Story: Improvising Disability with Multiple Intelligence
9. Dr. Koch: Whats Next: Politically, Practically, and Socially (Bioethics of Prenatal Screening)
10. Laura LaChance: Dental Care and Down Syndrome
11. Barbara Laird: Before Behavior Begin
12. Arleigh Luckett and Kristy Simons: Potty Time- A Whole Body Approach to Toilet Learning
13. Marlee Matlin: Self-Advocate Meet & Greet 
14. Dr. Dennis McGuire: Promoting Strengths and Creative Potential in Persons with Down Syndrome
15. Mercer Family: Leaving Home
16. Karen Meredith Blott: Getting What You Want: Why You Need to Consider Personality
17. Lorraine Paquin, Jullian Paquin, and Nicole Paquin: Advocacy and Action
18. Dr. Gordon L. Porter, CM: Making the Case for Inclusion: Strategies for Parent Activists
19. Dr. Mary Pothos: Medical Issues in Children with Down Syndrome: Everything You Ever Wanted to Know and More
20. Erin Sheldon: Using Technology for Inclusion
21. Sarah Strathy and Maryanne Bruni, Silver Creek Preschool: Total Communication Approach in an Integrated Pre-school
22. Catherine St. Cyr: The Benefits of the Montessori Experience for Children with Down Syndrome
23. Surrey Place Centre: Caregiver Tools and Strategies for the Health of Boys and Men with Down Syndrome
24. Surrey Place Centre: Caregiver Tools and Strategies for the Health of Girls and Women with Down Syndrome
25. Surrey Place Centre: What You Need to Know… All About Your Health 
26. Voices At The Table Advocacy (VATTA) Committee: Down Syndrome: The Evolution