Thursday, October 27, 2011

We Need Some Organization People!

Most of you know Aaron was born and diagnosed with Down Syndrome in Atlanta. For some reason, Atlanta has a pretty DS community and one of the national Down syndrome organizations (National Down Syndrome Congress) has it's headquarters there. The Down Syndrome Association of Atlanta (DSAA) is huge, very well organized and does a lot to help the DS community there. Although Aaron's diagnosis came as a shock to us, we were given a packet of information about Down syndrome before we ever left the hospital that gave us a lot of hope and resources to connect with other parents. There is a Down Syndrome clinic at Emory that we have taken Aaron to every year since he was born. He sees a Developmental Pediatrician there and she has been an invaluable resource to help guide us through the maze of health care providers and various medical issues that are associated with Down syndrome.

When we moved to Phoenix, I just assumed there would be something similar here. It's a big city, so surely it must be the same, right? I found an group online that I figured was the Phoenix version of the DSAA. But when we got here, I discovered that the group I had joined has most of it's meetings on the other side of town, in the Scottsdale and Tempe areas. Then I found out that there is another Down Syndrome support group that ALSO meets on that side of town.

Honestly, I still don't get it. Why two different organizations that claim to do the same thing? Why not join forces? Surely they could better benefit the community that way. And living out here in the West Valley, I still feel like we are virtually left out of it completely unless we want to drive an hour to get to a meeting or event. I spend enough time driving, I really don't want to make that drive too. There is no Down syndrome clinic here either. That's not such a big deal. There is a Special Needs Clinic at Phoenix Children's Hospital that we go to. We actually get to use our doctor there as our regular Pediatrician. We love Dr. Wendy, she is very knowledgeable about DS and she is amazing with both of my boys. I would still like to see a Down syndrome clinic though. Somewhere that families could come on a yearly basis - especially those families who don't have the luxury of coming to the Special Needs clinic because they live too far away.

I really think the people of the West Valley could benefit from some programs for our families and kids too. This is a big city and we shouldn't have to drive to the other side of town just to get information and support. One of the DS groups says they have a West Valley chapter, but I haven't seen any events over here in a long time. Honestly, I'm kind of at a loss as to what to do about it. I am frustrated by the separation of the two groups. I would just start my own group over here in the West Valley, but what good would that do? Then there would be three DS organizations in Phoenix and that would leave our community even more divided!

I think it just irritates me because I know how good and powerful it can be and I just don't see that here. Any ideas or suggestions would be appreciated because I'm just not sure what to do at this point!

1 comment:

  1. Kristi, I just got around to reading your latest posts. This one really touched my heart (well, not as much as the last one....that one basically made a beautiful mark on my heart). I agree with is the same thing with the Autism Societies. WHY are there so many of them in the area...why not make one with one purpose. To make the lives of a families and individuals living with Autism better. JOIN together people! SO, with that in mind...why don't you call the president and ask to meet with him/her? Find out if there is any way they can have a west valley chapter and offer to help. I agree that it would NOT at all be productive to start another group all together. I am sure you have met others in your area, right? Keep me posted!