Being An Advocate

Part of the challenge of having a child with Down Syndrome is learning the lingo and walking the road less travelled. To do this, we have yelled for help to those who have gone before us and we, too, try to make the way smoother for those who will travel behind us. We daily and weekly wade through the "system." We are in a constant state of research and discovery of what is available/not available for Andrew. We have been blessed with friends and angels that God has put in our path to shed light on the area that we need most for that day. Thankfully, God goes before us and comes behind us.

It is a very un-ordinary road that we walk down, and sometimes I think about what life without Down Syn. would be like, and the word that comes to mind is "boring." Of course there are days that I beg for our life to be boring, but those are few and far between. I am constantly reading and talking to other people in the community about what they have tried for their children - what works - what doesn't work, etc. We cling to strangers who throw us lifelines of desperately needed information. I am so grateful to be college-educated and capable of finding what is best for Andrew, and I feel privledged to be at home and have the time to research and talk to others.

The world of parents of kids with DS becomes very small. You find out quickly who is still bitter and just wants to piss and moan over their problems, just as you find out quickly who is willing to go to the mat for their child. We are learning that as much as this journey is about us and our family and what God has for us, it is more importantly about Andrew and what is best for him. Being a parent has a way of stripping selfish layers away, and this has proven even more true with Andrew. It is a juggling act and balancing act of what is best for each of my children and what is best for our family. I often think that God gave me the twins so that I would not "over-focus" on Andrew. Blake, Brantley, and Jeffrey bring balance to the equation. (sorry, my math-major comes out sometimes.)We pray daily that God will direct our paths and give us wisdom in dealing with and raising our children.

In reading this weekend, I found this petition for tax breaks for parents with special needs kids. This is not just for Down Syndrome, but for autism and other special needs as well. While the state and federal govt do their best to help, we find that this road is an expensive one, and there are law-makers that are trying to give us a tax break. Feel free to read it and e-sign it if you feel so inclined.
http://www.petitiononline.com/txbrk456/petition.html
The other organizations that have proved to be helpful are National Down Syndrome Congress and the National Down Syndrome Society. They both give pretty good over-views of what DS is without being scary.

I so appreciate all the love and support our friends and family offer. It means a lot to us and we thank you!