World Down Syndrome Day

Today is World Down Syndrome Day!  This day is celebrated around the world on the 21^st day of the third month to signify the triplication (trisomy) of the 21^st chromosome.  So today I wanted to share with you what I knew about Down syndrome before, and what I have learned over the last couple months. 

While I knew a little bit about Down syndrome growing up, and in my young adult life, I must confess that I didn’t know more than the very basics until about 5 years ago.  At Jack’s kindergarten party, before the school year started, I learned that he would have a classmate with Down syndrome.  I remember calling my mom and asking her the best way to talk to Jack about it.  (My mom has worked with people who have special needs, including Down syndrome, in the past).  She told me just to tell Jack that everybody wants the same things in life no matter what their differences are: to be loved, listened to and respected.  When she put it like that it seemed so simple, and true.  That advice has replayed over and over in my head for so many different scenarios over the last five years. 

I have learned so much about Down syndrome over the last five years because of our school and its RISE program bringing these kids into our lives.  RISE stands for Religious Inclusive Special Education, and it is one of the things I love most about Marquette, even before we found out about Matthew.  But as I was spreading the news to our extended family and friends who aren’t at Marquette, I realized that there are so many people who know so little about it.  So this day serves as the perfect excuse to spread a little bit of knowledge and awareness to those who will know and love Matthew!

Down syndrome is the most common genetic variation.  It occurs when an individual has a full or partial extra copy of chromosome 21.  The extra genetic material alters the course of development and causes some of the common characteristics associated with Down syndrome.  It occurs in all races and economic levels.  The cause of Down syndrome is still relatively unknown, but is not caused by environmental factors or anything the parents did before or during pregnancy.  The chance a baby will have Down syndrome increases with age of the mother, however 80 percent of babies born with Down syndrome are born to mothers under 35 (like me). 

Of the many symptoms associated with Down syndrome, very few people have all of them and many people have very few.  Just like every other person, Matthew will grow to have a unique personality and capabilities.  Down syndrome causes developmental delays and, typically, mild to moderate cognitive impairment.  Both, however, range across a broad span and the degree depends on the individual.  Low muscle tone is also common in people with Down syndrome.  This can affect how soon a baby will reach milestones such as sitting up, walking and speaking.  People with Down syndrome can do almost anything a typical person can do, it might just take them a little longer to master it.

People with Down syndrome today have a brighter future than ever before.  In 1983, when I was born, the life expectancy of somebody with Down syndrome was only 25 years old.  Today, it is 60, and will continue to rise.   With the ever-expanding knowledge of how people with Down syndrome learn and the best ways to support their development, individuals with Down syndrome are much better able to reach their full potential than in generations past. People with Down syndrome can grow up and live independently, go to college, get married and have jobs. 

While we have no idea what the future holds for our sweet little Matthew, we do know that he will be the person that God made him to be.  He will be surrounded by a loving family, who will give him every opportunity possible to grow and learn and live a happy and prosperous life.  He will get to go to the same private, Catholic school as his brothers.  He will be able to play sports with his classmates if he desires.  His brothers will learn patience and respect for his differences and be his biggest cheerleaders for his victories.  And I am certain that he will teach us all many more lessons than we could have ever imagined. 

Please don’t be afraid to ask us questions.  We still have so much to learn as well, but J.P. and I have both immersed ourselves in reading and taking in as much as we can. 

Here are a couple good resources for anybody interested in learning more:

http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/

http://kidshealth.org/en/parents/down-syndrome.html#

And I have to share this video about the RISE program at Marquette:

https://www.youtube.com/watch?v=usbbuF4I1XU