It has been a long time since I have updated my Blog. Between work and meeting all the needs of my boys there is not a minute of time for me but I am not complaining! Steven and I were talking about our day, right before he fell asleep he said "today was the perfect day", once again inspiring me to share our story.....
Our day started as I prepared the boys for their belt tests at Ju Jitsu. Andrew testing for his orange belt and Steven his yellow belt. Andrew has been training since December and Steven July. Steve would always come with me to Andrew's class, he did show an interest but I thought it was not a good fit for him. Lots of structure, no fooling around and quite a bit of peer interaction. The Sensei tried to convince me to let Steve try. I had to hold back, I was not comfortable. How will the other children view him? How will this impact Andrew? lots of questions I wrestled with. Then, the very end of June I decided to let Steve try. Typically when children try a class they do it in street clothes until they get a gee. Sensei gave Steve a gee the first day and the rest is history. A child with major sensory issues wearing a gee, I could not believe it! He wears his gee proudly and trains hard. My goal for Steve was realistic, if he could pay attention in class for 1 hour then I would be thrilled and the rest would be icing on the cake. Well, as always Steve has gone above and beyond that. Once again inspiring me and all those around him. Not only does he sit and pay attention and learn but he is also teaching. Teaching these children and adults that have never met anyone living with Williams Syndrome. He learns how to work with others and they learn how to work with a person with a disability. These children take their experiences from the dojo to the outside world. Having learned that people with special needs are just like the rest of us, they just need a little extra help. The dojo supports Steven, encourages, challenges and protects him. He is loved there and he loves them all. Last week Sensei announced that Steve would have the opportunity to test for his yellow belt, Andrew and I were at the class when this was announced and we were SO EXCITED! Our Sensei has a huge heart, he knows Steve is giving 110% and he is rewarding him. Yes Sensei Tom, you are truly making a difference in a very special boys life!! How blessed we are to live in a community that has embraced Steven. I am proud to say both boys tested well and have moved up in rank. Steven was so proud of himself as he should be. For me it was a moment that words can do no justice, it was just a feeling. My journey has been quite a journey. Our challenges endless but that only makes the rewards so much sweeter. He is my shining star!!!!
After our test we were then off to the second annual WS family picnic. Last year the kids did not last more than 2 hours and this year it was close to 5 hours. The other WS families in our small group are truly extended family. We sit and chat, any and all behaviors are acceptable, nobody feels uncomfortable. These gatherings allow us to share our stories, good and bad. We are able to see what's ahead and perhaps better prepare ourselves as parents for the future. We all have learned that nothing happens if you just sit back and go along for the ride. Our children with WS needs endless advocating for. They are often misunderstood by professionals not familiar with WS. I recently went to a board of ed meeting. Not many parents there but there were parents of children with autism and parents of children with downs syndrome. These parents are giving their child's disability a voice in the school district. I have learned how important it is to give Williams Syndrome a voice and I am happy to be that voice.
Our day started as I prepared the boys for their belt tests at Ju Jitsu. Andrew testing for his orange belt and Steven his yellow belt. Andrew has been training since December and Steven July. Steve would always come with me to Andrew's class, he did show an interest but I thought it was not a good fit for him. Lots of structure, no fooling around and quite a bit of peer interaction. The Sensei tried to convince me to let Steve try. I had to hold back, I was not comfortable. How will the other children view him? How will this impact Andrew? lots of questions I wrestled with. Then, the very end of June I decided to let Steve try. Typically when children try a class they do it in street clothes until they get a gee. Sensei gave Steve a gee the first day and the rest is history. A child with major sensory issues wearing a gee, I could not believe it! He wears his gee proudly and trains hard. My goal for Steve was realistic, if he could pay attention in class for 1 hour then I would be thrilled and the rest would be icing on the cake. Well, as always Steve has gone above and beyond that. Once again inspiring me and all those around him. Not only does he sit and pay attention and learn but he is also teaching. Teaching these children and adults that have never met anyone living with Williams Syndrome. He learns how to work with others and they learn how to work with a person with a disability. These children take their experiences from the dojo to the outside world. Having learned that people with special needs are just like the rest of us, they just need a little extra help. The dojo supports Steven, encourages, challenges and protects him. He is loved there and he loves them all. Last week Sensei announced that Steve would have the opportunity to test for his yellow belt, Andrew and I were at the class when this was announced and we were SO EXCITED! Our Sensei has a huge heart, he knows Steve is giving 110% and he is rewarding him. Yes Sensei Tom, you are truly making a difference in a very special boys life!! How blessed we are to live in a community that has embraced Steven. I am proud to say both boys tested well and have moved up in rank. Steven was so proud of himself as he should be. For me it was a moment that words can do no justice, it was just a feeling. My journey has been quite a journey. Our challenges endless but that only makes the rewards so much sweeter. He is my shining star!!!!
After our test we were then off to the second annual WS family picnic. Last year the kids did not last more than 2 hours and this year it was close to 5 hours. The other WS families in our small group are truly extended family. We sit and chat, any and all behaviors are acceptable, nobody feels uncomfortable. These gatherings allow us to share our stories, good and bad. We are able to see what's ahead and perhaps better prepare ourselves as parents for the future. We all have learned that nothing happens if you just sit back and go along for the ride. Our children with WS needs endless advocating for. They are often misunderstood by professionals not familiar with WS. I recently went to a board of ed meeting. Not many parents there but there were parents of children with autism and parents of children with downs syndrome. These parents are giving their child's disability a voice in the school district. I have learned how important it is to give Williams Syndrome a voice and I am happy to be that voice.
What can I say? I am honestly not surprised by Steven's latest achievements.Afterall, he has quite a role model, his mother who never gives up!
ReplyDeleteI am so proud of him. I miss seeing him everyday at school, but I have his & Andrew's picture up in my office at home. I am glad you are his voice. I know people will listen!