And yet, when I sat with my family, friends and supporters of Sam we hit on all these areas and more. As the "Mom" and Path facilitator I often had to take a step back, let go of my fears and truly dare to dream. I like the Path process because it leaves you with a visual image of the dream which is what Sam is holding. I look at this page of the process often to encourage me and keep me focused.
We dreamed about Sam living independently. Wow, that alone is a big step for me. We discussed the possibility of Sam living with another person with a physical disability but not a cognitive one and that they could help each other out therefore not feeling like a burden to anyone. We discussed Sam living with a friend in a duplex with a support person or family living next to them for a reduced rent. It was really amazing to brain storm about all the possible situations and how we could help others while at the same time helping Sam.
During this process we also talked about Sam's gifts. What does Sam bring to the picture?? I'm sure most of the people present could attest to the fact that knowing Sam has changed their life in some way. His smile, his laughter, in a very simple sense...his presence has touched so many people. No one will forget Sam singing "Jesus Loves Me" or the amazing smile he had on his face as he sang "Happy Birthday". As I looked around the room, his smile and excitement was just contagious...everyone was smiling, everyone was taking a picture of that moment, a moment of sheer joy that will be with them forever. This little boy who has overcome so much, who on a daily basis has more hurdles than you or I could imagine just emits pure joy.
We dreamed about Sam learning to care and cook for himself, driving his own jet ski, even.....(big breath here) driving his own vehicle and if not driving then arranging his own transportation. We dreamed about his involvement with his church, Special Olympics, team sports and a music group. We dreamed of his friendships, a girlfriend (yes, that was another deep breath) and his love of travelling. We dreamed about college and what that might look like. Yes, I said the word "college". We dreamed about possible employment options for Sam. My brother and I both gave examples of when we have seen Sam show pride in his accomplishments. My example was something that happened recently at the shop. My husband has his own heating and air conditioning company and Sam lives to go to work there. But I asked, what would a job look like for Sam. One weekend, a month or so ago, I stopped at the shop to check up on my boys, all 3 of them were there. Ben was working on his recyclables and Jeff and Sam were washing vehicles. Sam wanted to wash my car. While I sat in my car, Sam worked with his Dad, soaping his brush in the water pail and then lifting it to the side of my car and scrubbing. To most people that would not have been a big event, but for me...watching Sam lift this heavy brush to scrub knowing what I do about his muscle tone, his right side weakness and his sensory issues I could only smile. To watch him use his right hand to control the pressure washer as he pressed with his left hand simply amazed me, I couldn't have come up with a better PT or OT exercise if I tried. But what really grabbed my heart was the look of accomplishment on his face, the pride he took in knowing he was helping his Dad out with something that had to be done.
My brother gave the example of him picking up Sam from the shop and unloading branches from his truck. Dave also saw that look of pride as he was doing something that mattered and really that is what we hope to arrange for Sam. A job where he can feel and sense his accomplishment. My brother in law always dreamed of Sam being a caretaker for an apartment building that he and my husband would build and own. We talked about what that would all entail and the skill sets Sam would have to have. We talked about Sam possibly taking over Ben's recycling job and what skills he would have to have to do it. I think the neatest thing for me as a parent was to just talk openly and honestly and to dream again. It was exciting, it was scary, it was challenging. But one thought, one idea that just kept coming through is that we need to take baby steps, small steps forward and the next part of the process was developing some of those steps.
This dream is our dream for Sam, it is not solid or finite, it will change and it will weave around what Sam's dreams are. As he matures and has more of a say in things, this Path will become his Path, what he wants, what he is interested in and what he wants to do.