A couple weeks ago Scott and I attended a conference with my parents called "Cerebral Palsy: Focusing on Independence and Hope." It was excellent. I promptly wrote this post but somehow it seems to have gotten lost or removed! Here it is again, with conference highlights as I saw them.
The conference's keynote speaker was Dr. Janice Brunstrom, director of the Cerebral Palsy Center at St Louis Children's Hospital. What made her even more awesome to hear is that she herself has cerebral palsy.
To hear about life with this disability from the perspective of a Christian (which was another big surprise) who has overcome it was the most encouraging experience. Dr. Brunstrom said that she grappled with anger as a young adult, but she has come to the conclusion that God orders our steps and that He brought all these things into her life to bring her to the place she is now. She said "If someone drew a line up here on the stage and told me that if I walked across it, I would immediately be normal, I'd have a really difficult time deciding what to do."
She said that if she could tell parents of children with cerebral palsy one thing, it is to love their children and accept them as they are. She cautioned us against only touching our children in the context of doing something for them. When you have someone who is so dependent for their daily needs, the tendency is to only touch them when changing them, moving them, feeding them, etc. Otherwise, they are on their own and you don't do much affectionate touching, like hugging, cuddling, holding hands, etc.
I think this is a huge challenge for me. I am so guilty of only touching my daughter in task-related contexts, and I realized it yesterday. I used to hold Elli a lot more when she was little. But then I was told that she needs to learn to do all these things on her own, and me cradling her was not helping her learn to use her body and get stronger. And that was true to a certain extent. But at the conference, I realized that I had somehow eliminated all physical contact with her except when dressing her, moving her from place to place, or doing other purposeful tasks. I'm very tired most days from all the work related to her care as well as the normal work of managing a home and mothering three children. However, I still need to take her out of her chair and hold her on my lap, snuggle with her on the couch, hold her hand, stroke her hair a lot more. Sam and Anna can climb on me, grab my hand, and ask for a hug, but Elli can't. I need to compensate for that by anticipating that need and meeting it for her.
I also learned some other things. Vision problems beyond acuity (near- or far-sightedness) are extremely common among people with CP. This includes things like depth-perception, tracking, and binocular vision. A doctor has developed a test for children who cannot verbalize that more accurately assesses their vision, and we were encouraged to ask our local opthamology department to get trained and get the equipment to administer this test. This may be a challenge, but I'm going to see what I can do.
I also learned more about the way Elli moves and why she moves that way. I'm hoping there might be some medicines that could help her control her body more, ones that also help Parkinson's patients. I also learned about another method to help with drooling, which is a big problem for her right now. I'm not sure we'll try it, as the thought of it kind of turns my stomach, but it's nice to know about options.
Elli's hips are a real concern right now. Her orthopaedic surgeon is really watching them now. I learned that we can use a special hip brace to keep them from displacing, hopefully forever. If her hips won't stay in their sockets, she will lose the ability to stand, even in a supported setting.
I also was challenged and motivated to work hard with Elli to get her more active. She needs to move and she needs to attempt weight-bearing activities to get her bones healthy, keep her muscles strong and long, and prevent things like hip displacement and scoliosis. It's going to be hard work for all of us, but it's so important. I simply have to invest time into stretching her body, getting her active and moving, and putting her into weight-bearing positions and activities. I'm not sure how it's going to work yet, but we'll figure it out.
One thing is for sure: not only will this be time-consuming, but it will also be expensive. A brief Internet search turns up quite a few special needs bicycles, at anywhere from $1500 to $7000 each. I'm not sure if we can find funding for this through insurance or county resources, or if we'll need to start fund-raising and saving up for it ourselves.
My parents said it was very eye-opening for them too. They said it was sometimes hard to hear because Elli's case is so severe (on a scale from 0 to 5, 0 being normal and 5 being the most severely impaired, Elli is a 5). But they got a glimpse into the challenges of our every-day lives, the kinds of gut-wrenching decisions we have to face, and the countless complications or secondary effects that a body crippled by cerebral palsy will experience.
The best part of the day was hearing from some kids with cerebral palsy. It really helped me see the people behind the awkward gait, the wildly-waving arms, the jerky head movements, and the garbled speech. Seeing their smiles and hearing their words was just incredible. One beautiful 7- or 8-year-old girl went up on stage, held the microphone, and thanked everyone for coming at the closing. She was sooo excited to be there and to do that and her smile just lit up the whole room. Her father was on a parent panel just before and said that he believes she is some of God's best work. There really are some amazing people trapped inside these bodies and he is exactly right.
