Sunday, December 6, 2009
Happy Birthday Sammy!!!!
Today was Sam's 9th birthday. First and foremost, I remember to thank God for bringing this amazing little boy into our lives. We gathered both sides of the family for a birthday celebration and a PATH planning session. PATH is a person centered planning approach. It builds community around the person with special needs.
Eventhough Sam is just 9 we wanted to get the family together to begin the process of thinking about Sam's future. We wanted everybody to help us think and brainstorm on what our hopes and dreams are for Sam's life. We have all heard the quotation "It takes a community to raise a child", in the case of special needs children this couldn't be more true. PATH is an 8 step process that begins with "The Dream". When Sam was born with Down syndrome we quickly put aside our hopes and dreams as we came to terms with his diagnosis. When he later suffered a brain injury it seemed those dreams were buried under a multiple medical diagnosis that was very bleak. However, with the help of NACD, http://www.nacd.org/ we were able to help Sam surpass the medical communities expectations by the time he was 3 years old and suddenly his potential was unknown. We had shattered the glass ceiling that was above us and we now had the chance and ability to dream again. At Sam's 4th birthday I asked our friends and families to fill out a gold star with a goal or dream they thought Sam would be able to reach in his lifetime. I wanted them to think outside the box and dream again. Many people found this exercise difficult.
Today, I explained when we began the PATH process that as we make a PATH...some of this work will be in developing new skills and new relationships; some of it will call for the courage to face difficult personal and social barriers, some of it will mean letting go of familiar patterns of thinking and habits of action in order to make room for new development. I asked each person to think of their own lives, what was important to them? What did they appreciate, enjoy and take pride in? What made them happy? And then I asked them to think about those same things for Sam. This was an amazing process for everyone that was involved...we talked...we brainstormed...we dreamed, sometimes we teared up or had to swallow the emotion that naturally comes with the process but we moved forward. We spoke openly and honestly and as we went through the process we developed a dream of where Sam would live, what that would look like, where he would work, what he would do for fun, his future education, his opportunities to meet and make friends, his hobbies, his transportation, his significant other, his faith...his life. In my upcoming posts I will share each step of the process with you in hope that it may help another family plan a PATH for their child.
Sam wasn't much into the planning at this point but as he grows older and matures the plan will become more and more centered about his wants and needs, his likes and dislikes...his hopes and dreams for his life. We will gradually build a safe, constructive and able community around Sam.
Today however, Sam was all excited about the fact that it was his birthday. He sang "Jesus Loves Me" for the entire family since many live further away and were unable to see his performance in church. For the first time, Sam was excited about presents. We used to extend Sam's birthday over a week as he chose one gift to open each day. But today...he tore open his gifts like any other 9 year old...not stopping until the last one was open. As we sang "Happy Birthday" the sheer joy that spread across Sam's face as he sang to himself was priceless. I don't think I have ever or will ever see another person so happy to sing the "Happy Birthday" song. How many of us could say we love to hear that song, to most of us it means we are a year older, to Sam it means he has lived another wonderful year on this wonderful planet we call earth and he is thrilled.
Tonight as I lay down to sleep, I will think about that smile...that look of pride and accomplishment...I won't be worried or scared about his future...because today we took the first step...the first step of many to plan out and provide a future for Sam.
Happy Birthday, Sam!!!