Thursday, October 11, 2012


October is Down Syndrome Awareness Month and it is also Right To Life Month.

Jim and Alex came home from Mass today and Jim told me that the priest spoke about Right To Life month.  He spoke about a little girl born with Trisomy 18 and how she has beaten the odds.  She is now 4 years old.  Most babies with that do not live very long and most parents are advised to terminate a pregnancy if it is found out in utero.  I am sure the doctors would say something like “Why would you put yourself and your family through that only to have the baby die shortly after birth, it would be best to take care of this now”. 

I have heard story after story of families that have learned their unborn baby has Down syndrome and be told “It couldn’t be any worse news” or “this baby will be a burden to you and your family” or “they will never learn how to ride a bike or walk” or “you won’t ever go on vacation again”.   When Alex walked in the door this morning after Mass, the thought ran through my mind—“how could anyone look at him and think that he should not have been born?” 

Because that is the reality of it------this child that I carried for nine months, gave birth to, nursed, feed, clothed and cared for the last 16 years--- some other mom may not have wanted.  I was never given a choice because I didn’t know before he was born, but I wouldn’t have done anything differently.  I still would have had him, loved him and fought for him even if I knew before he was born.  Sure—I would have been scared, just like I was when he was born, but I still would have loved him. 

When I look at Alex, I don’t even see Down syndrome.  It is not who he is.  It is just a part of him.  So, when Jim and Alex told me that they were talking about Down syndrome in church today, it kind of took me aback…I had to think a second and realize that it was about him. 

Alex's Justin Bieber look
I know that just by Alex being here has made many, many people change their minds about Down syndrome and what a person with it can be.  My daughter Kristen, just told me a story of one of her friends saying that if he hadn’t known Alex from the pool, he would have been scared if he had found out that a future baby had Down syndrome.  Now that he knows Alex, he wouldn’t think that way.  Alex has changed a lot of people’s minds about Down syndrome and what it is like to have it.  This makes me happy.  I know that it certainly has had an impact on Kristen’s life…in a good way.  Here is a video that she made about a new blood test that is being marketed to prenatal moms.  It is an earlier way to tell if your baby you are carrying has Down syndrome.  Here is what she wanted people to know about it:

Acceptance is a Beautiful Thing

When the boys were little, the thought of what their lives would be like in the teenage years and beyond was a very scary thing for me.  I wouldn’t even let myself go there.  I have fought very hard for the last 16 years to have them both included as much as possible in school and in our community. What I am now realizing more and more is It is something that has to be natural, not forced on others.

The last couple of months has really changed my attitude about the community and how they see my boys, especially Charlie.  You see, Alex has always had a loving and sparkling personality that draws people to him.  Charlie does as well, but you have to look closely to see it and be a part of his inner circle.  The kids that he knows from school have always been nice to him and enjoyed his silliness and quirks, but those who don’t know him may think it is odd or strange for a 14 year old boy to be reciting Mr. Bill lines at the pool or the mall (believe me, I have seen the looks!). 

Our family and friends love Charlie for who he is and find his humor charming and seriously hilarious.  This is why putting him into a whole new environment like our church’s Cross Country team was very scary for me.  I tried to come up with every excuse in the book as to why he shouldn’t do it.  The coaches are the ones who approached us with the idea---we did not ask if he could be on the team.  I called Jeanne (the coach) to try and get out of it, but she made me feel that he would be safe and that they really wanted him.  What a wonderful feeling as a parent of a special needs child to actually have people want them and you not begging them for him to be included.

So we said we would try it—give it a week, if it didn’t work out, then he didn’t have to stay on the team.  I had to get over my anxieties-- would the kids accept him and be nice to him (most of the kids are from parochial schools and have never had a child with autism in their class), would he like running, would he be safe in the woods (one of his favorite places), etc.  I took a deep breath and sent my husband Jim with him (I’m sure an avoidance tactic on my part) and anxiously awaited their arrival home to see how it went.  Well…they came home and Jim told me how great Charlie did!  He loved running, and the coaches and parent volunteers were great!  Whew…..

Running in the home stretch--one of the kids running alongside him encouraging him.

One coach really took an immediate liking to Charlie, coach Ray.  Jim said that Ray ran with Charlie the whole time and they exchanged various Mr. Bill and Seinfeld lines with each other.  They had an instant bond!  This really made me feel comforted, as well as Jim telling me that the kids were so nice and welcoming to Charlie as well.

Charlie, Alex and Coach Ray
Throughout the season, all of the kids and parents and coaches have done a tremendous job of caring for Charlie, encouraging him, understanding him and cheering him on.  He has gained so much confidence and true love for running since he started.  Our goal was for him to participate in just one race, by the end of the season but coach Ray got him running the second race of the season!  I wasn’t even there because I thought there is no way he would run---but he did!  Alongside him was coach Ray and he has been with him every step of the way.

I cannot tell you how much joy I got when I saw him run the next week, with cheers from all the parents and kids (even the other teams).  Charlie has only gotten as far as half of the course, but he has accomplished so much more than that---he is truly a part of a team and they truly like him for who he is.

It has been an amazing journey and I have Biz, Jeanne, Ray, Ed and Pat and all the other kids and parents on the team to thank for it….you have no idea what including Charlie on the team has meant to him and to us.