Angelman's Syndrome

Angelman Syndrome (AS) is a neuro-genetic disorder that occurs in 1 in 15,000 live births. AS is often misdiagnosed as cerebral palsy or autism. Characteristics of AS include; developmental delay, lack of speech, seizures, and walking and balance disorders. Individuals with Angelman Syndrome will require life-long care. (Angelman's Syndrome Foundation, 2011).

I happen to be working with a 5 year old with Angelman's with a general development level of a much younger child. No speech. No walking. This is sort of a rare condition so even within the "clinical work" field I had people ask me if that is a real condition. Well, it is. When I started with my client he was not able to drink, eat solids, and had many episodes where he couldn't breath. Something like "dry" drowning. I was sent to help him with his lack of self expression.

I started working with drumming on Tom Tom Drum and singing while playing with a ball (to help him with his grasping issues). As you can guess, the time passed before I could see any improvement. Finally, one day I went to see him and immediately after I sent the drum in the floor, he came and started drumming! He was actually able to remember what we did. I was surprise. I must say that the mother was even more excited: "He is playing more with his toys since you've been here!" she said smiling. For her, that was victory.

As you can imagine, the progress, if any, was slow. Not even steady. But there i remained for some time. I decided to start working on the client's inability to clap. As you know, clapping requires some work from our brain. He wasn't able to clap. I recommended the family to keep helping him to put his hands together to stimulate that side of the brain when I wasn't there. After a week I was going to see him, thinking that maybe he needed to be discharged because there was nothing else I could do. Well, I was wrong. The welcoming at his home was ridiculous! (in the good sense!) They couldn't wait to tell me that my little sweet boy was clapping! Even clapping TO THE MUSIC!
I felt weird. I was just thinking in dropping the ball. And there he was with his big smile...clapping.

I am still working with this child. He is actually able to move his arms in parallel movement and today he was able to shake a shaker with little help! He is playing with his toys and let me hold him for a longer time.

CONCLUSION:
We must NEVER underestimate the value of our efforts. Sometimes we think we can't do it when we are actually making it happen. We need to believe in ourselves and believe in what we do. It does not matter how little is our kindness, it is big in someone's eyes. Now, I look forward to see this little guy who always smile, trusting that whatever I give...doesn't come back empty!

Much love!

http://www.angelman.org/