Myths and Facts about Down Syndrome #1

Down Syndrome Awareness month ... some myths and facts about Down syndrome...

Myth:  A child with Down syndrome will suffer.

Reality: This could not be further from the truth. Yet, this is exactly what we were told by our (obviously uninformed) genetic counselor when we found out that Mason would have Down syndrome.  Does Mason look like he is "suffering?"  Not in the least!  We have been incredibly blessed with Mason's good health and I know some people with Down syndrome are not so lucky.  As many as 30-50% of babies with Down syndrome may have a heart condition, but only approximately 5% will require open heart surgery . The care of that 5%, by qualified pediatric cardiologists, is remarkable.  With proper preventive and medical care, most individuals with Down syndrome go on to live happy and wonderful lives!

Myth:  Bringing a child who has Down syndrome into your family will be harmful to your other children.

Reality: This is just not true! In fact it is just the opposite.  Siblings of people with Down syndrome  actually have a higher chance of becoming more compassionate and accepting of other people.   We see that in our family.  From a very early age, Owen knew that Mason learns at a different pace from other kids his age.  We always emphasized the fact that everyone is different and has things that come easy to them and things that are hard.  Owen supports and encourages Mason and is always there for him.  And Owen's friends follow his lead and treat Mason just like any little brother!   Amelia and Mason have a very typical brother / sister relationship... they fight over toys (a lot) but when Amelia is sad, Mason is the first one to run over and tell her "It's okay, don't be sad, baby."  The benefits of having a sibling with Down syndrome have been a best kept secret until Dr. Brian Skotko did a study on the affects of having a sibling with Down syndrome which showed that the vast majority of brothers and sisters describe their relationship with their sibling with DS as positive and enhancing.  Link to Dr. Skotko's study


Myth:  Children with Down syndrome must be placed in segregated special education programs.

Mason with one of his many wonderful teachers!

Reality:   Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community.  This is our goal for Mason.  There is no reason that Mason cannot participate in a general education classroom with a modified curriculum for those areas that he falls behind.  Studies show that when children with Down syndrome learn alongside their "typical" peers, they learn faster and more effectively than when they are isolated in a special education classroom.   Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.  We will give Mason every opportunity to also meet those goals. 

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Down Syndrome Awareness Month - October 2012

Did you know that October was Down syndrome awareness month?   In October 1984, President Ronald Reagan signed a resolution proclaiming the first "National Down's Syndrome Month".  It's amazing to look back and see all that has changed in the past 28 years, not only in the world, but for people with Down syndrome.  No longer are people born with Down syndrome assumed to be placed in an institution.  Instead, they receive life saving surgeries (as necessary), early intervention from birth, schooling in their local school systems, a trade, a job, and live to be more than 60 years old.  But, unfortunately, stereotypes remain.  One of the goals of Down syndrome awareness month is to help break those stereotypes.  To help people see that people with Down syndrome really are more alike than they are different and really just want to be treated with respect and kindness, the same as you and me.   There is a "31 for 21" blog initiative and I'm not going to pretend that I can keep up with blogging every day this month (you saw my dismal showing in my attempt at a 365 photo blog) but I will try to post more often this month with some facts and stories about living our life with Down syndrome.  What I hope to show through my blog, and really through our day to day life, is that having a child with Down syndrome has not negatively impacted our lives  ... in fact, it hasn't *really* impacted our life at all in the ways that matter.   <Except that we have been able to meet a bunch of really awesome new friends who also just happen to have a child in the designer genes club, of course>  So, please, help us celebrate the joy and beauty that resonates from that extra 21st chromosome! 

 

To kick it off, here are some facts about Down syndrome:

• Down syndrome is a common genetic variation in which a person is born with an extra 21st chromosome.  This  usually causes delay in physical, intellectual and language development.
• The exact causes of the chromosomal rearrangement and primary prevention of Down syndrome are currently unknown.
• Down syndrome is one of the leading clinical causes of cognitive delay in the world – it is not related to race, nationality, religion or socio-economic status.
• The incidence of Down syndrome in the United States is estimated to be 1 in every 700 live births.
• Of all children born in this country annually, approximately 5,000 will have Down syndrome.
• There are approximately 1/4 million families in the United States affected by Down syndrome.
• While the likelihood of giving birth to a child with Down syndrome increases with maternal age; nevertheless, 80% of babies with Down syndrome are born to women under 35 years of age, as women in that age group give birth to more babies overall.
• There is wide variation in mental abilities, behavior and physical development in individuals with Down syndrome. Each individual has his/her own unique personality, capabilities and talents.
• 30% – 50% of the individuals with Down syndrome have heart defects and 8% – 12% have gastrointestinal tract abnormalities present at birth. Most of these defects are now correctable by surgery.
• Individuals with Down syndrome benefit from loving homes, early intervention, inclusive education, appropriate medical care and positive public attitudes.
• In adulthood, many persons with Down syndrome hold jobs, live independently and enjoy recreational opportunities in their communities.

Source:  National Down Syndrome Congress

P.S. You can contribute to support Down syndrome awareness, advocacy and programs through the DSANV Buddy Walk Team "Mason's Maniacs" here or click on the gadget on the left side of the blog.   Thank you!