Sujeet Desai

When I was pregnant with AVH, my youngest, and after I had already found out that my son would be born with Down Syndrome, I got a call from my sister (who lived in a time zone 1 hour ahead of us) one night saying, "I just watched the most amazing thing on 20/20. You have to turn on your TV and watch!" This was a special about a young man with DS who fell in love and ended up marrying and bright and beautiful girl with DS. I literally sat on my couch and bawled. I touched me so deeply. And I think about that young man quite a bit. (The pictures are of their Hindu wedding ceremony and their christian ceremony - both on the same day.)

This young man - his name is Sujeet - also happens to be a double black belt in Karate and quite an accomplished musician. He plays 6 different instruments including the piano and violin. He graduated with honors from high school, he went to a music college, and now he travels all over the world giving concerts. I thought about him about a week-and-a-helf ago, wondering how his mother taught him so well. Not 5 days later I got a flier in the mail from our state's DS support group saying that they were having a gathering and that a fine young man named Sujeet Desai was coming to give a concert and his mother a workshop on the importance of music therapy and teaching children with DS. I couldn't believe it! I knew that I had to go. It meant a two hour drive for me, but I figured it would be worth it - and hey, I'd get a day all to myself.

The workshop and concert were yesterday, and it was worth every penny I spent on gas to get there! I thoroughly enjoyed the concert and hearing Sujeet play but his mother said some important things that I know I will refer back to again and again as I work with AVH.

She assured us that Sujeet was a very normal child with DS - "he is not a magic child," she said. He had a pretty profound speech delay in fact. What she said was, they recognized his strengths and used those to help his weaknesses. They had no idea that he was musically inclined until he was about 9 yrs. old. He started coming home from being at his brother's piano lessons and he would play the songs he heard. That's when they started to think about finding a piano teacher who would even accept him as a student.

She stressed being an extremely strong advocate for your child and introducing him to as many opportunities as possible. And ignore people who give you grief for "doing too much." (I've already encountered that with AVH) Treat him as you would any other child. She fought for him to be included in regular classrooms at school. It was a battle, especially through junior high but she won. By the time he was in high school though, she pulled him out of regular classes because she thought he would thrive more in a small setting of his peers. She said don't be afraid of doing what is best for your child.

She told us that she talked to him constantly and when she couldn't talk anymore, she would turn music on. She said that even if they aren't speaking right now, know that they are absorbing everything that is going on around them. One of my favorite things that she said, speaking from the child's point of view, was "Tell me and I will forget, show me and I will remember, involve me and I will understand." I think that is so true for each one of us.

All in all, it was very inspiring. Sujeet is a very well spoken, witty, and bright young man. He is living all of his dreams (he just got his learners permit to start driving!) It makes me feel like AVH's future is so bright. It will be exciting to watch and see what our little boy's strengths are - I can guarantee that we will take those and run with them. Help him to be the best he can be. And I am grateful for good role models who help me to have the courage to do everything I can do for my son - to fight for him.

It was fun to see so many families and their darling kids with DS at this event. There were so many little babies - it makes you just want to savor every little minute that you have with your kids when they are babies. It took me a minute to remember that I DO have a baby, he's 17 months, but he's still a baby. It really made me wish I had brought AVH so I could show him off a little - I can be a proud momma with him! And everyone was asking me about him. I could hardly wait to get home and see him. He has the best smile and it melts my heart.