Happy World Down Syndrome Day, 2013!

Welcome to March 21, also known as Down Syndrome Day.

Since I live with a person with Down syndrome, I thought I’d celebrate the day by sharing with you some non-stereotype facts about people and children with Down syndrome, to enlighten and enrich you:

1. Down syndrome and autism are not mutually exclusive.  An article in Psychology Today claimed that 10-15% of children with Down syndrome have autism.  Amelia does not have autism, but thanks to her school, I did discover that she has sensory issues.  A few years back, they put a sensory vest on her and it calmed her down.
2. Many people with Down syndrome get Alzheimer’s.  The Alzheimer’s Association says that studies suggest that rate could be as high as 75%, and are more likely to get early onset Alzheimers.  The good news is that this correlation, complemented by genetics studies, could be key to research finding a cure for Alzheimer’s.  Let’s hope so.
3. People with Down syndrome are always happy.  Pish. Tosh.  People – and kids – with Down syndrome get angry, have hissy fits, act out, get depressed, etc.  Amelia is by nature, affectionate, happy and content, true, but as we navigate tweens and pre-puberty, she certainly is moving away from that.  I used to blame myself for all her bad attitudes, but now I see it as part of growing up, hormones, and more or less, a normal reaction to the approaching teen years.
4. People with Down syndrome can’t —.  Go to college? Wrong!  Have a career?  Buzz, no.  Get married?  Three strikes, you’re out!  The fact is, kids and people with Down syndrome have a spectrum of ability.  While Amelia does fit the “stereotype” of not being good at math (yea, like you, are??), I see a bright future for her with school (modified, perhaps), a career (so many options now), and relationships.  Now, I still don’t think she should have kids – I mean, genetics are genetics to a degree – but there’s no reason she can’t have a beautiful, fulfilled, amazing life that will touch others.  In fact, she already has! All the kids in her class adore her and are sad when she’s out sick.  She has jobs at school and is an integrated part of society.  Inclusion has rocked her world, helping in everything from socializing to academics, and while she is behind the others in some things, I don’t believe she’s a victim of bullying or seen as “lesser.”
5. Abortion and Down syndrome: Down syndrome is not a good reason to abort a fetus.  You’re basically saying you want a perfect child and, with parenthood, there are no guarantees.  (Ask ANYONE who’s child has regressive autism.)  Is there more to deal with, medical issues, education, bullying, tough decisions about sex?  Well, yes, but note that everything on that list can apply to any child.ANY CHILD.So, let’s do a little thought experiment, shall we?  They are working hard on early diagnosis (0-6 months) of autism, which has a HUGE spectrum.  What do you think will be the effect of prenatal testing on a condition that has such a negative stereotype, if the “positive” condition of Down syndrome has a 90% abortion rate (as of 2007)?  Just consider that a moment, and then reconsider aborting a fetus with Down syndrome.

As for me, I continue to watch in amazement as the seeds of womanhood take root in her.  The other day, I walked in on her and saw the stunning teen she’ll become.  (Yea, it freaked me out a little!)  For now, we are continuing to challenge her to be independent, and now that she is over 4 feet tall, she can help herself in the kitchen, clean up on her on, be responsible for homework.  It’s all good, and it’s certainly good to be Amelia’s mama.