A proper send-off

In October we spent all this time focusing on Down Syndrome Awareness Month  and then suddenly November is here and it doesn't feel like we gave Down Syndrome Awareness Month a proper send-off.  No worries - it's not too late.  There is a simple and meaningful way that we can move forward knowing that we made an important contribution to the Down syndrome community.

 

This opportunity is brought to you by Dr. Julia Kinder.  Dr. Kinder is a family physician and a mother to an 8 year-old girl with Down syndrome.  She has created a simple petition that is requesting that all medical students receive proper training regarding Down syndrome.

Why is this important?

90% of pregnant women who find out that their baby may have Down syndrome choose to abort. 

 

While this blog does not exist to take stand on divisive political or religious issues, we are here to advocate and inform about life with Down syndrome.  As a physician and parent of a child with Down syndrome, Dr. Kinder knows that the decision to terminate a pregnancy because of Down syndrome is often based on a diagnosis that is delivered without proper resources, support and information.



You don't have to look too far to find people in the Down syndrome community who have numerous stories about negative, inappropriate, or offensive comments made by medical professionals about Down syndrome.  Dr. Kinder lists some examples on her website. 

 

Thirty five years ago, my parents did not have a pre-natal diagnosis.  However, when Leanne was born, a doctor told my parents to institutionalize her, forget about her, and move on and have other children.

 

These types of comments are delivered out of ignorance.  It's a shame that members of the medical community who are seen as resources for knowledge and information, do not have the education nor the comfort level to deliver a sensitive and accurate picture of Down syndrome and it's implications for a child and family.



Dr. Kinder's petition simply requests that all 3rd year medical students receive a minimum of two hours training with up-to-date information about Down syndrome, how to productively deliver the diagnosis, and how to provide support and resources for the family.

 

She needs fewer than 4,000 more signatures.  Please take 30 seconds to click HERE and sign Dr. Kinder's petition.  YOU can make a difference. 

 

*Fellow bloggers, please feel free to pass this information along to your readers.

Survey reveals first-hand perspective of those living with Down syndrome

Down syndrome has been a part of my life since the day I was born.  As much as this makes me feel like somewhat of an expert, at other times it makes me feel completely ill-equipped to explain what the "Down syndrome experience" is like to an outsider.  I've never been an outsider; only an insider. 

Me & my big sister, Leanne

 

Having never experienced Down syndrome from a perspective of shock and adjustment, as a new parent whose child has just received the diagnosis, I try to imagine what the questions and concerns would be.  Perhaps you would wonder how taxing this would be upon you as a parent.  Perhaps you would wonder what kind of an impact it would have upon the child's siblings.  And perhaps you would wonder about the quality of life facing the individual with Down syndrome. 

 

Well, last year a survey was conducted by a physician at the Children's Hospital of Boston and it addresses these three perspectives.

My family on my wedding day.  Leanne was my Maid of Honor (or "Best Woman" as she preferred to call it)

 

 

 

You can read through the findings in full entirety here but the bottom line is that the "Down syndrome experience" is an overwhelmingly positive one for everyone involved - ESPECIALLY for the individuals with Down syndrome!  I challenge you to find any survey of any population of typically developing individuals that reports such astounding happiness and confidence results. 

 

And as for the small percentages of parents and siblings that expressed embarrassment and regret, well, I wonder what that percentage would be if parents and siblings were polled about typically developing family members.  I bet the propensity for negative feelings would be even greater.  There are always small segments of the population that will express discontent at any circumstance;  You know, the "glass half full/poor me/life's not fair" people that are impossible to please. 

So to the outsiders who associate the term "Down syndrome" with uncertainty and fear, here's what us insiders want you to know:  It's a FORTUNATE few whose lives are graced by Down syndrome.  This survey affirmed my perspective that these fortunate few emerge happier, prouder, and more enlightened and we are ultimately grateful for this blessing.