Cerebral Palsy Conference Summary

I got back yesterday from the Cerebral Palsy Conference in St. Louis, Missouri. The weekend was full of tears, laughter, emotions, and lots of information!

Here was the agenda:

As you can see the covered MANY different aspects related to Cerebral Palsy. I’m going to break this post into sections so I can describe things adequately:

Conference Sessions

Most of the speakers are connected to the Cerebral Palsy Clinic in St. Louis, Missouri and covered various aspects of the management and care of children with CP. They discussed everything from orthopedic and surgical interventions, to vision, to behavior, to various drugs available to help kids with CP. They also presented about some of the current research being done in the field of CP. It would be incredibly difficult to summarize about 15 hours of information here. So I’m just going to summarize this section with one reccommendation: If you have a child with CP – schedule an appointment to take him/her to see Dr. Jan at the CP clinic in St. Louis. She has assembled an amazing team and they can evaluate and give recommendations for your child’s care. They have quite a long waiting list, so it may take some time. But this team seems highly skilled and able to help manage a child’s care very adequately.

Inspiration

My favorite part of the conference was all of the presentations by children and adult living with cerebral palsy. They had children’s doing presentations, talking, families giving inspirational talks. What I seemed to hear over and over again was – First and foremost, I am a person, just like every other person. Don’t treat me like I’m different. Treat me like I’m just another person.

Nathan has no words – he has no voice. But I felt like I heard his voice through the voices of other kids with CP who can speak. And they all said similar things. I want to have fun. I want to live a normal life.

During the conference they talked a lot about “inclusion” and about how to “normalize” the lives of kids living with Cerebral Palsy. They talked about and showed us ways to make sports and daily activities “accessible” to our kids. I saw quadruplegic kids dancing and doing karate. I saw photos of kids included in all sorts of activities. It was just amazing! I felt so inspired.

If there’s one thing I “took” from this conference is the realization that Nathan’s life has to be as “normal” as possible. We will continue to do therapy and to keep him stimulated, but I realize that I have to do this in the context of “regular” activities. I will write more in the coming days about how I am going to be doing this with Nathan.

My favorite part

My favorite part of the conference was meeting and talking with other families! Even though we try hard to live a “normal” life – it is wonderful to share stories and experiences with others in similar circumstances! It’s easy to feel isolated when in the context of our “normal” lives because the things we experience are so different from what other moms and families experience. It’s pretty cool to be able to spend hours talking to other people who can actually understand and relate to what we’re going through!

Back Home

I returned home yesterday to find Nathan dirty, badly dressed, but very happy! He was radiant and peaceful and chilled out. Him and daddy spent the weekend having fun! They went out together Friday night, Saturday they went to Universal Studios and went on many of the rides and saw many of the shows. Saturday night they saw Monsters Vs Aliens in 3D. They picked me up at the airport in Orange County and on our way home we stopped at Disneyland and spent a few hours there. By the time we got home yesterday he was exhausted but happy as can be!

Seeing Nathan so happy affirmed the decision that I made after the conference – let’s have as much fun as we can and incorporate his therapies into a fun and enjoyable lifestyle!