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Nathan is Hebrew and means "gift from God" - we couldn't have been more blessed than to have been chosen as his parents!

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Monday, October 25, 2010

Down Syndrome Awareness Month (Part I)

October is Down syndrome awareness month and many in the Ds community are blogging about it everyday, in a campaign called 31 for 21 (31 days for triosomy 21, the medical term for Ds). I'm not one of them. However, I didn't want the month to go by without acknowledging it's importance in our life.

When Nathan was born, it was my experience that all the available literature either painted a rosy picture of having a child with Ds, or provided us with a "worst case scenario" glimpse into his world and ours. I've come to learn that ~ there is no substitute for personal experience and like every other child, each is a joy and each presents their own challenges. Our life isn't easy ~ my schedule is insane but how's your life going? Is it easy? Are you busy? We all have a choice ~ to look at it through rose colored glasses and make the best of it, or be consumed by the worst case scenario.

With this said, there is a reality that a family and a child with Ds must confront ~ the possibilities. The good and the bad. I'd like to give you a glimpse of what that may be ~ a glimpse into our journey. Some bridges we've crossed ~ others are yet to come.

Individuals with Down syndrome may have a few or all of the following characteristics:

Flattened nose / flat facial profile (90%)
Upward slanting, almond-shaped eyes (80%)
Low muscle tone / hypotonia (80%)
Increased flexibility (80%)
Excess skin on back of neck (80%)
Small, simple ears (60%)
Poorly developed 5th finger (60%)
Small head
Brushfield spots on the iris of the eye
Skin folds of upper eyelid covering inner corner of the eye / epicanthal folds
Short, broad hands with short fingers
5th finger curves inward
Single crease on the palm of the hand
Wide gap between 1st & 2nd toes / sandal gap
Short stature
Fusion / syndactyly of 2nd and 3rd toes

Medical Complications Associated with Down syndrome
Early-Onset Alzheimer Disease (11% by age 50; 77% by age 70)
Dry, Hardened, Flaky Skin (75%)
One or More Abnormalities Present at Birth (50%)
Heart Defect Possibly Requiring Open Heart Surgery (40-60%)
Thyroid Disorders (up to 50%)
Obstructive Sleep Apnea / Pauses in Breathing During Sleep (33%)
Atlantoaxial and/or Atlanto-occipital Instability (10-30%)
Blockage in Stomach or Intestines Possibly Requiring Surgery (12%)
Autistic Disorder (5- 11%)
Seizures / Epilepsy (10%)
Increased Risk of Childhood Leukemia (2%)
Cataracts ~ Vision Problems
Hearing Loss ~ Ear Problems
Breathing Problems
Increased Susceptibility to Infection
Increased Susceptibility to Dental Problems
Increased Risk of Autoimmune Disease
Problems with Muscles & Skeletal System
Tendency for Obesity / Weight Gain
Males are Unable to Reproduce (this is debatable)
Increased Risk of Testicular Cancer in Males
Intellectual Disability & Developmental Delay for Individuals with Down syndrome
Variable Range of Mental Disabilities can range from Mild to Moderate
Mean (Average) IQ of 42 Range of IQ from 8 to 67
Developmental Delay in Achieving Milestones
Need for Physical Therapy
Need for Occupational Therapy
Need for Speech Therapy
Need for Early Intervention & Case Management

Long-Term Prognosis for Individuals with Down syndrome
Participate in Community Sports, Activities, & Leagues
Participate in Special Olympics & Therapeutic Recreation
Inclusion in Regular Classes
Complete High School
Attend College or Post-Secondary Education
Employed Competitively
Employed in Workshop Setting
Live Independently
Live in Group Home
Have Friends
Have Intimate Relationships
Get Married
Drive
Life Expectancy (age range of 50s-60s)

Persons with Down syndrome are ~ "More Like Other Children Than Different"

Thank you to Mommy With My Special K's for this list. It originally came from NDSS a few year ago, so thank you to them as well!

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