In honor of World Cerebral Palsy day I wanted to share about my work at UCP. But let me start at the beginning:
Cerebral Palsy is:
• A number of disorders of the developing brain affecting body movement, posture and muscle coordination.
• Caused by damage to one or more specific areas of the brain, usually occurring during fetal development; before, during or shortly after birth; during infancy; or during early childhood.
• Not a disese, not progressive, nor communicable.
U.S. Statistics:
• It is estimated that 764,000 children and adults in the U.S. manifest one or more of the symptoms of cerebral palsy.
• According to the Centers for Disease Control and Prevention (CDC), each year about 10,000 babies born in the United States will develop cerebral palsy
• 1,200 – 1,500 preschool age children are also recognized to have cerebral palsy each year.
• A 2009 CDC study found that the average prevalence of CP in 2004 was 3.3 per 1,000.
The prevalence was significantly higher in boys than in girls overall (male/female ratio,1.4:1)
Types of Cerebral Palsy:
• Spastic Cerebral Palsy: characterized by muscle stiffness and permanent contractions
• Athetoid or Dyskinetic Cerebral Palsy: characterized by uncontrolled, slow, writhing movements
• Ataxic Cerebral Palsy: characterized by poor coordination and balance
SOURCE – ucp.org fact sheet
During the last twenty years as a music therapist, I have had the privilege of working with many children that have a CP diagnosis. When I plan sessions, I keep in mind the functioning level of the group, but through differentiation, I am able to use an intervention to build on the strengths each individual. But that is not really what I want to focus on right now. Instead, I want to tell you about a few of the individuals that I have worked with, and how they have touched my heart.
I will start with Ben. He was in middle school when I first met him, medically fragile, non-verbal and in a wheelchair, with very limited mobility in his arms and head. He also had a full-time nurse to suction him as needed. He presented as a bright and happy boy and laughed when I let him strum the guitar. His nurse would hold other instruments for him and he would use his fingers to play. Halloween that year was on a school day and his costume was way over the top…his parents had purchased a blue fur “Sully” costume from “Monsters, Inc.” and they built a door and frame around his wheelchair. What a riot! Although he couldn’t eat candy, he enjoyed handing it out to the other kids. His sense of humor was so advanced that he would laugh at all of my jokes and antics, which always made my day. I enjoyed making him laugh and although he contracted pneumonia during that school year and passed away, I still remember that laugh!
Laura came into my life several years after Ben. She had similar mobility and health issues. She was very frail and the teacher told me that she was very sensitive to loud sounds. She seemed to be in pain quite often and would cry during the day but she would stop during music therapy. The teacher would seat her behind other kids and farther from me (the source of the loud sounds). I quickly found that, although she would startle at loud sounds, she smiled and reached out to strum the guitar and she really relaxed and was able to breathe more deeply with vibrational input from the big gathering drum (so much for the loud sounds theory!). Now maybe I have mentioned before, that I like to “clown around” in my groups. I joke with the kids and try to make them laugh. Making Laura laugh was not an easy task but I remember on two occasions getting a full belly laugh from this beautiful girl. Like Ben, Laura got pneumonia and passed away. So it was an extra special treat that last June, when I was asked to take a sub-contract position at UCP of Central AZ, there was a building dedicated to Laura. I love seeing the sign with her name each week and knowing that, through music therapy, I was able to bring her some joy and laughter in her short life.
Now I will jump ahead and talk about someone that I get to see each week when I work with the adult day treatment program. I will call him Max. He is in a wheelchair but has very strong upper body strength so he is able to wheel himself and play instruments independently. As part of a big group, it has taken a little bit longer for me to get to know the individuals, but I noticed Max pretty early in the program. Although it took a while for me to learn his name, I recognized that although he is non-verbal, he does understand, has a lot of useful skills, and he has a great laugh. One afternoon I was handing him a cabassa. I pointed to my head and said “Cabeza” (Spanish word for head) and then pointed to the instrument and said “Cabassa”. Well, that did it! Max started laughing with a deep belly laugh that was so infectious it got all of us laughing. And my joke wasn’t really funny; I was just trying to teach the name of the instrument! Now each week when I enter the adult day r0om, Max points at me and laughs. What tickles me even more about this story is that when he does this it reminds me of my oldest brother. As the 4th of 6 children, there was a lot of teasing and my oldest brother was the king of teasing. He could make me cry by sitting across the room and pointing at me and laughing. Now although that laugh is the same, it is like a warm hug!
UCP has the motto “Life without limits for people with disabilities”, so what I want to get across to anyone who reads this is that although a diagnosis may give us some ideas and guidelines for providing effective therapeutic interventions, don’t assume that because someone is non-verbal, in a wheelchair with limited mobility, that they don’t understand or are unable to think. Find the true identity of the person inside and you will be richly blessed as I have been and continued to be.