exposure

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.

 

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Day at Harrison Lake with a neighbour friend and Jessica on the right. We stayed for many happy hours that day.

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Canada Day Parade! Tons of people, hot sun, noisy firetrucks…but we did it, and we had fun!

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An afternoon at the dusty, hot and noisy agrifair. We did it! And, Cody loves rides!

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Touch a Truck Day! Full of people and unexpected noises and blaring firetruck sirens, but Cody absolutely loved it all!

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Baseball, a brand new sport for Cody. He’s a part of a team, and he fits right in.

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Riding a horse. As much as he loves riding, he loves snuggling with Lisa even more. Who knew how much he would adore this horse? It is absolutely heartwarming to witness him hold, hug and lean against her for an hour at a time.

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Climbing rocks. About 20 minutes before this Cody had a meltdown, crying and angry he had to have a break sitting in the car to regulate. When he was calm, he joined us and proceeded to shock us all with his focus and diligence climbing down and then up an embankment of rocks!

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He likes ice skating!

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!

 

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A trip to the city park becomes the highlight of his day. Listening to the fountains and feeling them spray on his fingertips, Cody could not stop smiling.

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.

 

*Blind and autistic B.C. man flies plane to fulfill last goal on bucket list

“You are braver than you believe”

Every one of us needs that voice of encouragement that propels us forward.  Like Christopher Robin to his beloved Winnie the Pooh; one which says “You are braver than you believe, stronger than you seem, and smarter than you think.”  No matter what our place in life is, no matter where we live in this big and beautiful world, no matter what challenges and disabilities we face, no matter whether our home is in Beautiful B.C. Canada or tied up in a crib at an institution hidden away in the countryside…we all deserve that voice.  It may come from a loved one or friend, it may come from a stranger, it may come from inside when there is no one there…but, oh please, may it come.

Yesterday as a family we followed the sounds of a lovely creek, walking up the side of a gorgeous meadow in the beautiful Fraser Valley.  We looked down to the bottom of a creek bed at the rushing stream below.  Rocks and boulders lined the side of the creek bed, making the descent a bit of an adventure.

Cody was with us.  He sat at the top of the meadow on a rock, listening to the creek below.  Then came the voice… “Cody, do you want to climb down the rocks so you can feel the cool stream on your fingertips?  You can do it, I’ll help you…every step of the way.”

In silence and stillness Cody sat on that rock, considering, pondering, for many moments.  What does this mean, he must have wondered? Climbing down rocks?  Are they like the small rocks I sometimes hold in my hand, or are they like this large rock I am sitting on?  Can I do it?

As we all stood waiting for his response, all of a sudden Cody stood up, reaching to the hand held out to him, and followed that voice.

Down he went, rock by rock.  Following directions intently, so focused as he alternated between crouching then sitting on a rock, reaching out with hands and feet to locate the next one, and standing up while holding hands with his guide, only to repeat the process.  Slowly but with concentration and determination, Cody made his way down to the creek.

He stood on the water’s edge, he jumped several times for joy, he smiled in pride and he reached down to feel the rushing cool waters on his fingertips.

The sides of the creek bed may be steep, the rocks likely unstable, the way may be dark…but the water is clear and cool and the voice is strong.  Can you hear it?  “You are braver than you believe, stronger than you seem, and smarter than you think.”

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On his way down

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Enjoying the creek

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On his way back up

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Almost to the top!

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I’m a rock climber!

 

LUMOS – J.K. Rowling lights a candle in the dark

J.K. Rowling, popular author of the Harry Potter series was deeply impacted after reading an article in 2004 describing children in institutions being in caged beds.  She knew she had to act and became founder and president of Lumos who “works to help the millions of children in institutions regain the right to a family” (See website here)

Their new short film, “Behind the Walls”, offers a compelling look into this disturbing issue affecting over 8 million children institutionalized: watch Behind The Walls

Read some of the following film’s script as a former resident reveals the horrors within:

“They tied this one girl up for 15 years, to protect her from herself, they said.  Because she hit herself.  And fed her with a bottle, until she knew no other. But maybe, I thought, she hit herself because they tied her up.”

“The babies come and they cry, for a few days…and then, they learn…that this is a silent place, with no complaints.”

“He was a longed for, first-born son.  They were told he wouldn’t live long, would never talk.  You could tell from their faces, they didn’t want to give him up.  He has a defect, they were told, How could you ever cope?  So they gave my young friend, Peter, up.  He remembers their faces, voices, or at least that’s what he says.  Peter gets a few letters, one of the lucky children here.  Letters full of love, and regret which speak of his family’s problems, of their poverty and desperation.  Few of us are really orphans.”

“The staff were as strapped as we were.  They didn’t know how to help, they were just too busy.”

Lumos highlights some facts about children with disabilities:

  • Children with disabilities are 6 times more likely than their peers to be placed in institutional care

Outcomes for children with disabilities in institutions are much graver than their peers:

  • those under 3 are 100 times more likely to die in institutions, with the remaining being institutionalized for life
  • research in one institution found that of all children institutionalized while young, none were returned to family; 22% moved on to an adult institution, 78% died in the institution

With the passion of J.K. Rowling leading the way, Lumos continues to take solid steps forward towards solutions*:

  • advocating internationally to divert funding directed to institutions instead to supporting families and creating inclusive programs within communities
  • supporting national governments in creating legislation, changing attitude and increasing funding towards protecting the rights of children and moving them from institutional to community based care
  • assisting and strengthening health, education and social services at a local level to discourage the need for institutionalization
  • working alongside NGO’s locally to advocate and bring awareness for children’s rights
  • working within institutions to ensure children’s rights, health, development and protection
  • supporting families directly to find support, education, and resources so they can keep their children with disabilities at home
  • working with children in institutions directly, teaching them to be self advocates, providing resources and planning to enable their departure from the institution

When J.K. Rowling read that article back in 2004, she said:

“I looked at that photograph of the boy in his cage bed and felt he has absolutely no voice. This touched me as nothing else has because I can think of nobody more powerless than a child, perhaps with a mental or a physical disability, locked away from their family. It was a very shocking realization to me and that’s where the whole thing started”.

She saw, she allowed herself to feel, she became a voice for the voiceless and lit a candle in the dark.

 

*Lumos “Seven levels of engagement”

Mother’s Day gift

Awakened on Mother’s Day morning by the frustrated cries of a boy who cannot speak or see,

Resurrects in me a sadness, an impotence, a yearning.

 

Observing the stares as we make our way around the playground,

Reviving in me a familiar frustration, fatigue, dejection.

 

Sitting with family on Mother’s Day afternoon while my son cries in his room,

Stirring in me a questioning, a waiting, a hoping.

 

Juggling with my thoughts in the dark of night,

Resuming a well known battle of feelings inside.

 

Then comes my salvation,

Mercifully, as it always does.

It shakes me and re-directs my thoughts…

Perspective.

Like a faithful teacher, once again.

It alters my thinking and breaks open my heart…

Perspective.

The birthplace of Gratitude,

The cradle of Compassion,

The doorway to Action.

Perspective.

 

Tonight, it whispers in my ear…

“What is mother’s day like for them?

Left and forgotten, tied within and without.

What is mother’s day like for them?

A Mother’s day in a motherless place.”

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boy in a bed

I saw this picture online of a boy in a bed, 15 years old but appearing much younger, lying face down with arms at his side.  He laid immobile on a sheet, no pillow or blanket.  There were no restraints on him to keep him from moving off the bed, but there he lay, and had laid for the last 8 years, as described the caption.

With the exception of being taken to be washed, the bed was his home.  There are no restraints needed when muscles have atrophied and the will to live is dying. He lives in an institution for the disabled, I’m not sure what his special needs are, but I know that his life was meant for so much more.  This boy in a bed has been burned into my memory and seared into my heart.

When I greet my Cody in the morning with a kiss and a warm “Good morning sweetheart”, I wonder if he also receives a greeting of love.

When I give Cody a fresh breakfast at the family kitchen table, I imagine what his first meal is like.

While I help Cody learn to dress himself, give him a high 5 when he manages the shirt all on his own, I wonder if this boy has known the pride of achieving a goal.

When Cody and I stand at the end of our driveway waiting for the school bus, I wonder if this boy knows the feel of the fresh morning air, the chill that lingers from nighttime, the peace that comes from hearing the birds call.

When I meet with his teachers, make plans for learning goals, advocate and research tools to help Cody learn, I wonder if anyone sees his potential and teaches him.

When Cody and I jump on the trampoline, his smiles and giggles filling the air, I wonder if ever this boy has jumped or felt the rush of motion as his body moves in the air.

When I love Cody with my heart and soul, I wonder if anyone loves him.

I do.

If only I could reach across the miles….

“Good morning lovely boy”, I would say.  “Come!  Time to get up off your bed and live this day together.  You have so much to give, so much to learn.”