Happy Down Syndrome Awareness Month

It's October already?  How did that happen?  As long as the days (weeks...months?) may feel at times, this year really is flying by.

October is a notable month for my family, as it is Down Syndrome Awareness Month.  For those who know my family, you are very aware of Down syndrome, and our mission to give Alex every opportunity that my other two children will have.  A lot of people, though, don't have much information about Down syndrome; we certainly didn't before Al was born!

So, in the spirit of Down Syndrome Awareness Month, I give you my list of DOs and DON'Ts for communicating with an individual with Down syndrome (and their family):

• DO be a supportive family member or friend.  Be a good listener while not feeling like you need to go out of your way to offer advice.  There is so much going on behind the scenes that I may or may not share with you: challenges (hello, potty training?!?), accomplishments, worries.  Just knowing that we have a terrific support system is so very helpful.
• DO treat Alex as you would any other nine year old boy.  He is more like a typically developing nine year old than he is different, and he wants to be treated as such (ie, DON'T talk to him like he's a baby.  This happened just the other day; a very sweet lady started a conversation with him, but he looked at her like she had two heads).  
• DO use person-first language. My son has Down syndrome; he is NOT a "Down syndrome boy".  He is a child with special needs; he is NOT a "special needs kid".  (psst...this applies to way more than just Down syndrome...)
• DO know the proper terminology.  My son does not have "Down's".  He is not "downsy" (thank you, Hollywood, for bringing us that awful term).  He has Down syndrome.  There is no abbreviating it, sorry.
• DON'T use the r-word.  EVER.  Just don't do it.  (Visit www.r-word.org for info on the Spread the Word to End the Word campaign.)  I don't want to hear any excuses anymore.  I know you probably didn't mean it; I know that at one time it was an acceptable clinical term.  Times are changing, though, so let's keep up, shall we?
• DON'T feel sorry for him, or our family.  Even after nine years, so often when we meet someone new and tell them about Alex, we get the sympathetic head tilt & nod, which is sometimes accompanied by an "Oh, I'm so sorry".  Really?  Why?  We're not sorry about it, so you shouldn't be, either.  Do we face extra challenges?  Sure.  Do we worry about our child?  Of course.  But, what family doesn't deal with these issues?  We'll be fine, but please refer back to the first "DO".

Finally, the biggest DO on my list: 

• DO accept him as an equal member of our community.  He can do everything we can do; he just may need a little more time to get there.  With a little extra compassion and caring, every individual with Down syndrome can accomplish ANYTHING.  

I hope that you will think through this list; feel free to pass it along.  My job as Alex's advocate will never reach an end, but you can help me in my mission just by sharing these things. 

Happy October!