Thursday, October 13, 2011

31 for 21: Awareness and Good News!

October is apparently the month of raising awareness for a lot of things.  Most commonly you're hearing about Breast Cancer Awareness Month.  I kept thinking, if half of the people who talk about Breast Cancer Awareness, talked about Down syndrome Awareness, there would be a lot more people who are educated and not so intimidated by Down syndrome. 

Well, today I saw a pleasant surprise.  Tori Spelling tweeted and Facebooked about Down syndrome Awareness month, and shared a very personal story from one of her friends who has a son with Ds.  Before having Kennedy, I was never a big blog reader, but I've turned into an avid one.  Reading Lisa's story brought back so many memories, and brought tears to my eyes.  I've read countless blogs, and 99% of them bring about tears. 

You see, once you have a child with Down syndrome, you automatically enter into this community of people who know exactly what you're going through.  You're not alone.  You're all advocating for your children, and you can all learn from each other.  There's always someone who understands, and is willing to guide you through the struggles.  Whether they be emotional, physical, or just informative.  I have to admit, this is a pretty awesome community of people to be a part of.  I'm really lucky to have "met" so many wonderful people, whether in person, over the phone, or on the computer. 

You should definitely check out Tori's post, Down But Not Out, featuring Lisa's story.  My favorite line in this story is, "My son is plus one (chromosome) but not minus anything."  I could not have said this any better.  

The past two or three weeks have been a real battle for me, working with our state program, Early Steps.  I feel as if we're getting no where.  After much discussion with my husband, we decided to seek the help of a third party.  Someone not employed or contracted by the state.  You know, people who actually make recommendations on the needs of the child, and NOT based on budgets.  I contacted Hope Haven, in Jacksonville to have Kennedy set up for an evaluation.  Hope Haven is well known for their services relating to children with Down syndrome.  I didn't realize it at the time, but people come from all over the world to seek their services.  We're fortunate to live just three hours away!  I nearly had a heart attack when the woman told me they were scheduling for SEPTEMBER!!!!  I was fortunate that she was able to fit me in where they had a cancellation in December!!  So, on December 7th, we'll be meeting with a group of experts to find out a true assessment of what we should be doing to help Kennedy reach her fullest potential.  I am so fortunate that we were able to get in so soon! 


  1. Maybe its different in Tampa, by our therapists do amazing with fiona. And if I don't like someone, we get someone else. The only bad thing .I have to say about early steps is someitmes the paperwork and budgets cause delays in getting a new type of therapy. But the therapists themselves give 100 percent to fiona, not matter what they are being paid. They are there for is whenever we need them, and we talk frequently inbetween appointments, which are weekly anyway. I feel our help and resources with them are limitless, other then maybe having to wait an extra week or two for a new type of therapist

  2. You will love Hope Haven and they will love Kennedy! Have a great weekend! Shannon in Tampa