Things I wish I knew…and some myth busters


Down Syndrome is NOT a rare genetic disorder. It’s actually the most common genetic condition. About 1 in 700 babies is born with Down syndrome and over 6,000 babies are born with Down syndrome in the US each year. Currently, it is estimated that there are over 400,000 individuals with Down syndrome in the United States.

More than 90% of the time, Down syndrome is caused by trisomy 21. A child with trisomy 21 has three copies of chromosome 21 — instead of the usual two copies — in all of his or her cells. This form of Down syndrome is caused by abnormal cell division during the development of the sperm cell or the egg cell. It is not an “inherited” condition, passed down from generation to generation.

The only well known risk factor for conceiving a child with Down syndrome is advanced maternal age. The older the woman is at conception, the greater the possibility of having a child with Down syndrome.

Most children with Down syndrome are  NOT born to older parents. Over 80% of babies with Down syndrome are born to women under the age of 35, and the average age of a mother of an infant with Down syndrome is 28 years.

Down Syndrome is NOT caused by the mother drinking or doing drugs (I have actually been asked this). It is something that happens at the moment of conception.

Babies with Down Syndrome are NOT “strange looking.” They’re actually EXTRA cute.

People with Down Syndrome are NOT dumb. They go to regular schools, graduate from high school, and many go on to college.

People with Down Syndrome are NOT institutionalized. On several occasions, college students on campus where we live have asked if Italy “has the right kind of institutions” for Annie. I am glad my family has been given the opportunity to correct this misconception in the young impressionable minds of the students we interact with each year.

Adults with Down Syndrome are NOT unemployable. They are contributing members of society and hold jobs of a variety of skill levels.

People with Down Syndrome are NOT always happy. They have and experience all the same emotions as the rest of us. Their feelings get hurt just as easily as everyone else.

Children with Down Syndrome do NOT have to be placed in segregated special education classrooms. Children with Down Syndrome can attend regular classes, some do not need assistance from classroom  aides.

There are many people who REALLY want to add a child with Down Syndrome to their family. There is an enormous waiting list  specifically for the adoption of children with Down Syndrome.

People with Down Syndrome do NOT have to live at home forever. A large percentage of adults with Down syndrome live semi-independently in assisted living facilities and group homes. Adults with Down syndrome often hold jobs and have romantic relationships.

Individuals with Down syndrome do NOT all die young. The average life expectancy of an individual with Down syndrome is now 50 years of age.

Down Syndrome really isn’t that scary. It’s actually brought more joy into my life. It has taught me how to take things a day at a time and to live every moment to the fullest.

2 responses »

  1. Colleen – EXCELLENT information for those of us who do not know very much about Downs……..thanks for sharing……..and teaching us too!!!

  2. Hi…I happened to come upon your blog through FB. You don’t know me, but I went to high school with Mike and my sister in law is really good friends with Rachel. Anyway, I just wanted to say that your blog is incredibly inspirational. I work with developmentally disabled adults. I have to say, it only gets better from here. The men and women at work who have DS are some of the MOST amazing and compassionate people I have ever met in my life. Your little girl is so lucky to have such open caring parents. I wish you all the best.

    Besides, normal isn’t any fun anwyay, is it?

    Good luck to your family and enjoy every precious moment you have.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s