I read a beautiful yet heart-breaking article yesterday about a 67 year old man named Patrick, born blind and diagnosed with autism, who had just finished a bucket list of adventures he drew up 3 years previous.* The beautiful part was that he was pursuing his dreams, the heart-breaking part was that he only began doing so at age 64. He had been in care since he was 3 years old, this means I am assuming, not with family but in some form of group, home or institutional care. While in this care he had not been given opportunities to try new experiences. Patrick’s homeshare family says this:
“He was sheltered most of his life,” Selina Olsen said.
“He didn’t get to do anything, so, once he started living with us, he started the bucket list and started thinking about all the things he’s never had a chance to do, all the things he’d like to do.”
That story has stayed with me, given me a sense of gratitude for the people and opportunities in Cody’s life, those who believe in his potential and see the value in him, and those opportunities which allow him to push his limits and feel dignity and pride in his abilities and sense of identity.
It also has motivated me to continue exposing Cody to new places, new people, and new experiences. This has never been easy though.
Some of many memories:
- the time my parents and I packed up a picnic lunch and beach toys, blankets, chairs, umbrellas, sunscreen, extra clothes, drinks, water toys, and snacks and drove 45 minutes with Cody to Harrison lake only to have to leave and return home only 20 minutes after setting up our lunch, blanket, chairs, umbrellas, sunscreen, water toys and snacks because Cody started screaming incessantly, loud enough to be heard by the windsurfers on the other side of the lake, and nothing we tried would get him to stop
- purchasing a tent trailer thinking it would be a wonderful way to spend family vacations, trading in the car for one with a motor strong enough to pull it, stocking it up, packing for a trip, parking by a beautiful creek in an rv park with pool and playground only to have one of us drive Cody home in the middle of the night, while he screamed and told us clearly that it would soon be time to put the trailer up for sale
- the time a group of us drove 1.5 hours through hot summer traffic to head to the beach at Stanley park, each carrying armloads of stuff including coolers, a little pop-up table, blankets, chairs, sand toys, umbrellas, lunch and had to haul said items, along with Cody and his cane down roughly 100 steps to the beach, only to have to take Cody home less than 1 hour later, up the 100 steps – while he screamed loudly and long enough to alert all those in the area that a child must be suffering abuse at the hands of his mom – and would somebody please perhaps call 911?
- picking up Cody from school after his field trip to Vancouver Aquarium and hearing them explain (while Cody clutches my neck in desperation, with a face red and swollen from crying) that Cody had cried the entire 3 hours they were there, that they didn’t know why but he could not stop and they could not leave so he had to sit and wait with his tears
I never know for sure how things will go. Exposing Cody to new experiences is exposing both of us to the unknown; it’s like playing Russian roulette, but with bullets of tears, screaming, anxiety, pain and disappointment. I’m learning though; to stay calm when Cody is upset, to not worry about what those around us think, to remember that he is struggling and trying to regulate, to remember that he wants to try and succeed, to wait him out and support him patiently. When I try something new, perhaps waiting for the gun to go off and instead there is quiet; maybe even smiles, laughter, and excitement – it’s ecstasy. I can’t even describe the joy. I didn’t just escape with my life, I hit the gold mine.
Cody loves fishing.
The second time we went out, he stood beside my dad for 1 whole hour, waiting for the fish to bite…content and happy the entire time!
Armed with memories like these, and those we continue to create together, I’ll keep trying. I’ll keep exposing him to this beautiful world, risking the bullets, helping him through the rough patches just to see that smile.