About Me

I am a single mom of three amazing boys!  All three of my sons entered my family through adoption.  All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!

Saturday, May 25, 2013

An amazing performance

With all that goes on in life, I sometimes forget to say that I am lucky.  I often feel it, and remember to count my blessings, but I don't always remember to say it out loud.  Here is the post that defines so many of the reasons I am lucky:
1.  My boys can all talk- if they are in pain, or happy or need something they can all tell me.  Even David, who has taken a long time to get to this point, I now know that if he is hungry or thirsty or needs something, he can let me know.
2.  My boys all have control of their bodies- so many children with CP or other disabilities are locked inside their bodies which they cannot completely control.  My boys struggle with motor skills, but they can all throw a ball, and control their gross and fine motor movements.
3.  My boys and I are supported by an amazing group of people, from family to friends and our community, we are loved and supported.  This is not the case for everyone who is raising children with special needs, but it makes our journey so much more full of joy.
4.  We share a lot of laughs at home together.  Sure, all families have struggles, but as long as there are giggles that seperate the struggles, then life is worth living.  The other night Matthew was cracking up and telling me that Jacob was being fresh......Matthew's giggle made me giggle and then we laughed together the pure laughter of a family.  The sound that makes the hard times easier.  The laughter that bonds you together.

On Thursday Matthew had a talent show at his school.  It was at this show that I was reminded that I am a lucky, lucky mom.  In his school there are approximately 55 children.  Each of these children struggles with developmental or behavioral challenges that are significant enough to require them to be in a class with only 4-6 other children.  Each of these classrooms has at least 3 if not 4 adult staff members.  These are children who face significant struggles.  Children who are not being instructed in their school districts because their needs are too significant.

As I looked around the room, the level of disabilities was intense- there were so many children who needed so much support and yet for these children it was talent show day.  It was their day to shine.  It was their day to sing, to tell jokes, to play musical instruments, it was their day.

The first child got up on stage and was playing a classical song on his violin.  It was amazing, my thought was that he must be a savant.  He appeared to have autism and yet his music was perfect.  He didnt miss a note.  When he finished my dad commented that it was the worlds smallest violin, and that you could hardly see his fingers move.  The boys father turned to my dad and with pride told him that it was a toy violin, his son pressed a button on the violin and it played the music!  For all of us in the audience, it didn't matter- the guts it took to get on stage, to stand in front of an audience, was amazing!  The presence of this child and his pride that he had played violin was phenomenal.  The fact that it was a toy violin did not take away from his moment in the spotlight, it made his moment more special.

From this boy, to the 2 boys who read jokes to the audience and made the audience laugh, to the boy who got on stage to dance and moved to the beat, to the girls who sang about butterflies each act was incredible.  For so many of these children, the success was simply in getting on stage.  The success was in doing something alone in front of an audience.  The success was in being in the spotlight.

Throughout the show what amazed me was that the entire school listened and appreciated each child's performance.  I have been to so many performances where the audience talks through the show, and you can hardly hear the person on stage.  I have seen parents and typical children ignore the person on stage.  To see this group of children cheer for each other, listen to each other, and respect each other was truly seeing an amazing support of community.  At this school the children all struggle, so no one is seen as different because they struggle.  Each child is cheered for their successes, rather than knocked down for their failures.

I will be forever grateful that I have a video of my son playing drums for a group of kids and adults who hooted and hollered when he was finished.  I will be forever grateful that Matthew's talent was showcased and that his teacher truly was in awe at his skill and cheered for him.  As I watch the adults in the video it reinforces for me that my son is loved, and cherished and treasured at his school.  Tears poured down my face as I watched Matthew shine in his moment.  It is one thing to know that your child is a talented musician, it is another to see other people amazed at your child's talent.

The Questar Boces program has given my son the gift of education, love and a feeling of success that is a right for all children.  For that I am forever grateful!

1 comment:

  1. Hi there. I'm Caroline, mother of the violin player at the talent show. Simon's teacher forwarded me the link to your blog. Thank you for writing about the talent show. I share your sentiments and Matthew was amazing! And you are truly an amazing person for raising 3 special needs children on your own. You are my hero!