Our Version of Normal

October is Down syndrome Awareness month and I wanted to share one of the first things I read in the hospital shortly after Lily was born.  I remember sobbing the first time I read "Welcome to Holland." The poem was included in our "Welcome to Down syndrome" party bag.  W e were already in "Holland" unbeknownst to us with the diagnosis of our twin sons with autism 4 years prior to Lily's birth.     Welcome to Holland by Emily Perl Kingsley I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. A...

There are a lot of people out there trying to stop the use of the "R" word.  Campaigns and blog posts are trying to make the general population understand how hurtful the word is to the special needs community. Before Lily, who has Down syndrome and autism, I myself used that word without thought. I'd never thought of my 18 year old twins, Reagan and Kaelan, as "mentally retarded". Even when they were tested when they were 3 by the school system and the results put them in the mentally retarded range with an autism diagnosis, I just blew it off as crazy talk because they were both brilliant in so many ways. Reagan has always been referred to as a little Einstein or the next Bill Gates. Lily was the eye opener for me. I couldn't bear thinking of her as mentally retarded or the more acceptable label cognitively delayed. The reality was I couldn't envision what mentally retarded meant for Lily. I just knew it sounded scary and overwhelming. ...