Is Your Child's School Inclusive?

Here are Indicators from the National Down Syndrome Society to help determine if your child’s school is inclusive:
 

1.      Your child attends the school that (s)he would have attended if (s)he did not have a disability;
 

2.      Your child is a member of an age appropriate general education classroom;
 

3.      Your child’s name is on all class lists, lists of groups put on the board, job lists, etc.;
 

4.      Your child’s related services are delivered primarily through consultation in the classroom;
 

5.      Your son or daughter receives the same or similar materials as students without a disability, with the needed supports (i.e. accommodations and adaptations as necessary);
 

6.      Your child passes classes with other students arriving and leaving at the same time;
 

7.      Your child has a locker/cubby alongside “typically developing” students;
 

8.      Your child rides the same school bus as his/her peers without a disability.
 

August is back to school month at DSI and with a new school year come new questions and concerns from parents about school inclusion for their child with Down syndrome. Based on a study published in 2008 and entitled,  “Membership, Participation and Learning in the general education classroom for students with Autism Spectrum Disorders who use AAC”  the indicators above can help you determine if your child’s school is inclusive or if there may be some areas where improvement can be made. 


Research has shown that there is a positive relationship between the amount of time that a student spends in the general education classroom and a student’s academic achievement, communication skills and social relationships.


An inclusive school/classroom is really important! 


There is an excellent webinar from the National Down Syndrome Society on this topic at:  http://www.ndss.org/Resources/Publications/Webinar-Series/.

The National Down Syndrome Congress in Indianapolis in 2014!

I had the pleasure of attending the 41st National Down Syndrome Congress (NDSC) Annual Convention this past weekend. One of the most meaningful moments of the convention took place at closing when the Self Advocates presented the Self Advocate Resolution. Their resolution is a statement of what is important to them and what they want for their lives. It is a powerful statement that deserves our support.  It is as follows:

                “I have Down syndrome and it is important to me that I am able to enjoy life to the fullest.

                I want to volunteer, work and be seen as a productive member of society.

                I want to spend leisure time with my friends and family and have lots of fun.

                I want to be welcomed a have a place in community activities.

                I want to live as independently as I can and make my own decisions.

                I want access to a good education and opportunities for life-long learning.

                I have Down syndrome and I am proud of who I am!”

While attending these conferences, I learn so much and am so inspired.  I am always wondering, how can I bring this back to my Indiana families? Well, my wish has finally been granted so mark your calendars!.....

The 2014 NDSC convention will be here in Indianapolis July 11 to 13^th, 2014.

“Such a Night”, the music benefit for Down Syndrome Indiana is less than two weeks away!

Get your tickets today for $15.00 at: http://www.ticketfly.com/purchase/event/271021?wrKey=A42A4EC703E67E706E4DB85CEF3C5B59

The event is a recreation of the music from The Band’s Last Waltz. It was held in fountain Square last year at Radio Radio and will be at the Vogue in Broad Ripple this year on Friday, July 26^th. The doors open at 8PM. Proceeds benefit  Down Syndrome Indiana, which is dedicated to enhancing the lives of individuals with Down syndrome.

Not sure you remember the singers, just the tune? Check out the video from last year’s event put together by Matt Mays and Mays Entertainment at: https://vimeo.com/48790664.

For more information, visit: http://www.dsindiana.org/NewsEventsPublications.php?cur_date=1374814800&cal_view=DETAILS&form_ref=459.

Proceeds benefit Down Syndrome Indiana and its mission to enhance the lives of individuals with Down syndrome.

DSI Family Picnic

Please join us, Sunday July 14^th from 11am to 2pm at Independence Park of Johnson County (2100 S. Morgantown Road, Greenwood, IN 46143) for the Down Syndrome Indiana Summer Picnic! It will be a fun-filled afternoon with our beautiful families featuring delicious gluten-free food, face painting, and a new sensory playground!  Please RSVP online, or by sending an email to register@dsindiana.org if you and your loved ones plan to attend.
 

This event is provided with no cost to our families, though we do accept donations of office supplies.  US postage stamps and white copy paper are greatly appreciated.

Self Advocate Outing on June 4th

DSI  will be hosting a Self Advocate Activity on Tuesday, June 4th at 3:00PM.  Attendees will experience rhythm and percussion, explore a wide variety of percussion instruments and artifacts from around the world through interactive exhibits and  multimedia experiences. Learn about rhythm, rock out on a drum set, play symphonic percussion and more! DSI covers the cost of a Self Advocate and their caregiver (if applicable). The Rhythm! Discovery Center is located at: 110 W Washington Street, Indianapolis, IN (On the lower level of Claypool Court at the intersection of Illinois and Washington Street)

 

For more information, please call 317-925-7617 or e-mail lisa@dsindiana.org.

Ask the Expert

Q: What is the risk for heart disease in adults with Down syndrome who do not have congenital heart problems (i.e., birth defects of the heart) and, specifically, atherosclerosis (hardening of the arteries)?

A: Adult patients having Down syndrome but no evidence of congenital heart disease are at the same risk for eventual development of atherosclerotic cardiovascular disease (coronary artery disease, stroke, peripheral artery disease, and aortic aneurysms) as compared to individuals who do not have Down syndrome.  Risk factors for the development of coronary artery disease and stroke include: 

 

(1) family history of early heard attacks or strokes,

(2) hyperlipidemia,

(3) hypertension,

(4) smoking,

(5) diabetes,

(6) obesity, and

(7) sedentary life style. 

 

The American Academy of Pediatrics (Pediatrics, July, 2008, Vol 122, No 1: 198-208) recommends a screening fasting lipid panel in all children by age 10 years, and as early as 2 years of age if there is a positive family of early atherosclerotic disease.  Atherosclerosis is a nutritional disease of childhood and decreasing the incidence of coronary artery disease in mid- and late-life necessitates establishing healthy habits in nutrition and lifestyle early in life.  (Berenson, et al; “Atherosclerosis: A Nutritional Disease of Childhood”, American Journal of Cardiology, 1998; 82:22T-29T)  The Muscatine, Iowa Study (Clarke, et al; “Changes in ponderosity and blood pressure in childhood: the Muscatine Study”; American Journal of Epidemiology, 1986; Vol 124, No 2, 124:195-206) confirmed that obese children have more significant hypertension and hyperlipidemia.  Longitudinal studies indicate that obesity acquired in childhood is predictive of worsened adult obesity and the development of coronary artery disease.  If children become overweight before age 8 years, obesity in adulthood is likely to be more severe.  Overweight children and adolescents may experience other health conditions associated with increased weight, which include asthma, liver damage, sleep apnea, and type 2 diabetes.  Obesity also puts children at long-term higher risk for other debilitating chronic conditions such as stroke; breast, colon, and kidney cancer; musculoskeletal disorders; and gall bladder disease.  The fundamental cause of obesity is a greater imbalance between energy intake (overeating) and energy expenditure (lack of exercise).
 

We must, therefore, encourage our children with Down syndrome to exercise more and decrease caloric intake to avoid obesity as a cause of developing atherosclerotic heart disease.  We need to treat the development of hypertension or hyperlipidemia aggressively.  If these patients develop insulin insensitivity (type 2 diabetes), this also needs to be aggressively managed.  A significant number of patients with Down syndrome may also have low thyroid levels (hypothyroidism) which may accentuate their tiring easily and obesity.  Blood tests are indicated to make certain that thyroid function in maintained normal.

 

Randall L. Caldwell, M.D.

Ask the Expert: Body Mass Index

Q: We just had my son’s 4-year old check-up and his BMI is above the 95%ile. What does BMI mean and what can we do to help him with his weight?

A: BMI stands for Body Mass Index. It is a number that shows body weight adjusted for height. Children’s body proportions change as they mature, so BMI for children is gender and age-specific. Children with BMI at the 85-95 percentile are considered at risk for overweight or obesity, while children at or above the 95 percentile (heavier body proportions than 95% of kids the same age and gender) are considered overweight. Children and adults with DS are at higher risk of obesity, but there are many things you can do to help. If your child currently drinks whole or 2% milk, change to skim milk. Encourage your child to drink water when thirsty, rather than juice, soda or sweetened fruit drinks. Limit fast food – it tends to be high in fat & calories. Encourage healthy snacks, like fresh fruits and vegetables, or fat free yogurt, and limit the amount of “junk food” in the house. Model healthy eating behavior yourself. Limit TV watching and encourage opportunities for physical activity. Finally, although you may be tempted to put your little guy on a “diet” – don’t do it! Offer healthy food choices at regular meals and snack times. Let him eat what he wants. Limiting portions other than dessert or intake tends to backfire and kids will often overeat later when they get the chance.

Maria Stanley, M.D.
Ann Whitehill Down Syndrome Program
Riley Hospital for Children
Assistant Professor of Clinical Pediatrics
Indiana University School of Medicine