So we just got home from our first escapade to Cincinnati. This trip was for an evaluation with the National Association for Child Development. With all of the craziness of the past weeks, I haven't had a chance to write about this really exciting possibility.
You can read the website for more details, but the short version is that NACD is a program that trains parents to help their children. Children undergo an evaluation in which their stage of development in various areas is identified and then a totally unique program is designed for that particular child. The program is based on data concerning the brain's plasticity and the belief that, given specific, intense, and frequent input, it can learn to accommodate for an injury. The input also organizes the brain, making it more efficient and improving its processing. I heard about it from my friend Tina, who has been participating for 6 months now, with great results. We were very lucky to get an evaluation this month, since the next date isn't until April and every day counts. They were actually full, but were generous enough to schedule an extra time slot for us.
So, Thursday evening, we met with Bob Doman, the founder of the program. He asked us lots of great questions, interacted with Collin, and discussed logistics and expectations. When he shared that his goals for Collin are running and jumping and playing, I had to kind of snort and bite my lip to keep from crying. It's impossible to explain what that kind of hope does for you. That, together with the fact that I will know exactly what to do for Collin and will be directly involved in every step of his development is enough to make me grin or blubber at any given moment. The evaluation lasted about an hour and a half, and we're hoping to have Collin's program early this week. We won't be able to do it full force for a while, since we'll be spending so much time in the hospital, but we sure as heck will do everything we can.
Then Saturday there was an NACD parent meeting for all of the families who belong to the Cincinnati "branch" of the organization. I can't tell you how good it was for us to sit in a room with other parents with struggles like ours who have found hope. I'm not saying it's a miracle that fixed all of everyone's problems, but we were connected by the fact that we all want more and better for our kids and are committed to doing whatever we can to make that happen, regardless of what doctors or ignorant people might think. We met some wonderful people who live close to us and we're going to start getting together for dinner periodically. We also met this fantastic kid named Scott who was diagnosed with Infantile Spasms at the same age Collin was. He was up walking around the room, smiling and making friends. I would have cried if I hadn't been so busy watching him. We left feeling so encouraged.
Even though I always feel a little wary when things seem good and I don't remember ever really feeling excited in the past year, I'm trying to just enjoy the reality that regardless of what has happened or might happen later, good things are happening right now.