2012 Families of SMA Conference

My fellow SMA friends and I

Before I embarked on my final year of MDA camp (Muscular Dystrophy Association), my family and I attended the Families of SMA Conference in Minneapolis. I hadn't been to one since about 4 years ago, so suddenly I was no longer considered a "kid," and chose to go to sessions that looked interesting to me (in the past, I had hung out in the kid's room where we did various crafts and games, or wheeled around the hotel with my fellow SMA friends).

For those of you who are not familiar with a conference of any type, in particular a Families of SMA conference, it is basically a large gathering of Families of SMA members from around the world. There's a ton of families, but then there's also all the researchers who come together and discuss their new scientific findings which each other. Most of them dress nicely and have glasses, as researchers should (Ok, probably only half of them actually wear devices to help their eyesight).

Every day there are a bunch of sessions for the families to attend. When I was younger, this was something only my parents did, but now, I considered them to be actually somewhat interesting. Of course, I still wheeled around the hotel with my friends in my free time. One night, me and my two really good friends (both of whom have SMA as well) decided to go through the dairy queen drive through in our wheelchairs. This was something I have done previously in the town that I live in, and it has never been a problem. I guess Minneapolis is different.

My friends were a little unsure about this, so I showed them how it was done by driving right up to the order box thingy and told the guy our orders. There was, I believe, only one car ahead of us. When we got to the window to pick up our orders and pay, a guy looked out at us and said "Wheelchairs? What the heck?" It was quite funny. He probably had never seen a person in a wheelchair before (he looked the type, if you know what I mean).

We waited for our order, giggling quite a bit, until another guy came up to the window and looked out at us. Pinned to his black DQ uniform was a badge that read "shift manager." Oh dear. He informed us, much to our dismay, that they weren't allowed to serve people walking through the drive through, and that we would have to come inside. We sent in my friend's helper to get our stuff.

The really ironic thing is that when she walked in and asked for the order, the guy said "Oh yeah, I gotta go get it it's right by the drive through window." Literally, all they would have had to do was extend their arm 2 feet through the window and we could have had our ice cream. Oh well.

But the sessions. They really were quite interesting. I attended one just for adults with SMA (I was the youngest person there) and learned a lot of things. There was one woman there who had a five year old daughter that she had birthed herself, and a grandma who had two kids herself as well. This was pretty amazing to me. I talked to the mother of the five year old after the session and she said that I took awhile to find an obstetrician who was willing to go through the pregnancy with her because they didn't have faith that it was safe. She did finally find one, though. Also, because of the muscle weakness around our spines, people with SMA usually have scoliosis or small, twisted torsos. I asked her how she did with carrying the baby, because her torso was so small. She said that her baby adapted to her body quite well, and ended up going to the side when she started to show, instead of straight out in front of her.

Another great session I went to was called What it Means to be a Teen on Wheels. I know, it sounds really cheesy, but it actually had a lot of great information. It was led by a 32 year old woman with SMA who is also a fourth-grade teacher. The main thing she urged was to be social and not afraid to ask for help. I totally agree with this. For a person with a visible disability, there already is one obstacle set up for you that you have to learn to take down yourself, because it's less common for other people to do it for you. Parents of young children with SMA or young children with disabilities - let your child be a "normal" child! It is so crucial to their life.

The grandma that I talked about earlier also has recently published her memoir, I Can Dance. I bought it from her at the conference and have since finished it. I would definitely recommend it. It's very personal and I think shares a lot of information that is nice to know. She has a website to go along with the book, called Laurie's Legacy. I'm not going to go into all the interesting things she covers, but I think it is a very valuable read, especially for young adults with a physical disability or parents.

I hope to be able to go to conference next year in California! It really is such a good thing for all people who have SMA or are affected with it in someway.