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.

 

DSC00561

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

IMG_5283

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

IMG_5902

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

Truckdriver1

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

IMG_5167

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

2015-04-26 13.34.50 HDR-2

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.

tmp-24

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!

IMG_6217

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!

 

IMG_1410

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

How do you get from A to B when you can’t see? Part 1

When Cody was a baby, he never crawled.  We knew it was important for development, so we tried various ways of getting him on his hands and feet in the crawling position (suspending him with a wide blanket across his middle while in crawling position) but he didn’t like it.  Of course, it is understandable why as a blind baby Cody would not crawl.  Crawling occupies his hands meaning he can’t use them to feel in front of him. Crawling leaves his head exposed and vulnerable to obstacles unseen.

He bum scooted though, and quite enjoyed it.

When he started walking at age 2 years and 5 months he walked with his arms and hands extended in front of him.  He was not taught this, it was instinct.  I wish I could find video of it to show you, he was amazing.  I could watch him walk forever, I was so enthralled by him. It took a long time of encouragement (sometimes forcing) before he understood and was motivated to walk.  Once he got it though, he was thrilled!

Another way he loved to get around was on ride-on cars and toys. These were brilliant!  He could sit down and use his feet to feel the ground and propel himself, while also being able to move as fast and bumpily as he could manage over curbs and through depressions and down little hills, all the while knowing that the ride-on toy would hit the obstacle before him – acting as a natural bumper.

This I have video of:

 

 

 

Oh my.  Those were wonderful moments.  Independence in movement, definitely an on-going learning challenge for Cody.  I am so grateful he has the opportunity to learn and grow in this area.

More to come!

P.S. 10 points if you can guess what song Cody’s singing in the second video! 🙂

“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.”

tmp-8

On his way down

tmp-16

Enjoying the creek

tmp-21

On his way back up

tmp-24

Almost to the top!

tmp-25

I’m a rock climber!

 

experiencing a story

Encouraging literacy for Cody has been a challenge.  Lacking the rich visuals from all the interesting and beautiful children’s books there are takes away from the experience.  Not only are pictures compelling, but they also offer so much information for the reader about what is happening in the story and also teach concepts to young children about activities and objects and people they might not get to experience first-hand.  For Cody, the lack of visuals means that both his understanding and his enjoyment are compromised.

There have been many ways his teachers and family have tried to compensate.  We try to pick books that relate directly to activities or concepts Cody has had experience with and is currently learning in school or at home.  We choose books with textures, patterns and rhymes.  We have created experience books; collecting items from hands on experiences Cody’s had and adhering them to pages, adding braille and binding them together. We have exposed him to audio books with animated story-tellers and musical accompaniment.

Another good idea which I hope to do more of with Cody is using story boxes.  Story boxes include a collection of items found in the story to be explored while reading.

Cody and I had some fun last night trying a storybox while we were reading one of his favourite books, If You Give a Mouse a Cookie by Laura Joffe Numeroff.   Cody is very familiar with this book, I’ve read it to him many, many times.  Overtime I’ve added more and more of the components of the book into a story box.

 

storybox

Here are some of the objects from the book: drink, straw, napkin, storybook, paper, pen, scotch tape, etc

 

 

When the mouse takes a drink with a straw and wipes his face with a napkin, so does Cody!

 

When the mouse starts sweeping in the story, so does Cody!

 

Codysweeping

 

 

When the mouse gets tired, fluffs his pillow and cozies himself under a blanket, so does Cody!  (he likes this part!)

And when it’s time to draw a picture and stick it on the fridge, so does Cody!

FridgePic

H’e’s done better as far as scribbles go!

Next time, if Cody’s lucky…he’ll get a cookie too!

 

 

freedom of speech…or, the lack thereof

“Deprivation of the ability to speak is more like an attack of impotence, or the amputation of part of the personality.” – Christopher Hitchens

Hitchens,  well known author/debator/lecturer, died in 2011 after 18 months of suffering from esophogeal cancer – a cancer which slowly robbed him of his voice.  In his last writings he speaks of the devastation of losing that which was “innate and essential” to who he was.  It is hard to imagine losing or not having your voice, isn’t it? Speaking what is in our hearts, in our minds, communicating wants, desires and thoughts is so natural and intrinsic that I believe we largely take it for granted.

There was a time when Cody could speak and sing much more clearly and regularly than he does now.  For reasons nobody seems to understand, his vocal voice has not developed and in fact, has to a large degree grown dormant.

There are many regular instances when Cody uses his voice for basic words of requests and, though very unclear, often he is understood by those who have learned to understand his attempts.  Other times he is not understood, and the emotions of frustration, anger and eventually, resignation, rule the moments.  Sadness often surfaces; pouting lips, large tears making their way down his cheeks…me, sitting impotent at his side.

For quite a while, Cody knowing that we were trying to understand; him knowing that we were listening carefully and reading his body language and natural gestures soothed and consoled him to a great degree.  People in his life have implemented various tactics and methods in our attempts to help him.  But he is 11 now, and as his comprehension grows, as he ages and matures and increasingly understands his world, these efforts and attempts of communication are not enough.

It was as a result of many hours of research, phone calls, emails, and meetings, that Cody now has a team of professionals assigned with an amazing goal; to provide Cody with a new way to communicate! Alternative and Augmentative Communication (AAC), is a term which describes various (often ingenious and highly adapted) methods of communicating for people who for many reasons cannot use speech, or at least not entirely.

Because Cody is blind, we cannot use many of the visual methods common in AAC.  The process of choosing and beginning to implement a system for Cody has been one with many questions, and one with the realization that we will continue to have questions…every step of the way!

We will be using Tangible symbols with Cody; real objects he can manipulate and hold, each representative of an activity or a particular item.  Some of these symbols will be a replication of the actual object (eg. a small ball will represent a ball).  Other objects will be a piece of an item which he would naturally associate with a certain activity (eg. a piece of a seatbelt will represent going in the car, because he is very familiar with the feel of the seatbelt on him). Gradually, we will teach him these symbols, with much repetition and use.  We will teach him how to exchange them – the meaning and power of handing the item to his partner, as a means of communicating a want or need. Gradually these symbols will change, grow smaller and thus more portable.  Eventually, these small pieces of items or textures will be mounted on cards and placed in a binder, one which he can flip through in order to make reference to items or activities he wants.

At school, the teaching team has introduced this by using objects to represent the various activities of his day.  For example, a spoon represents snack/lunch.

At home, one way I am helping with this process is by teaching him the concept of exchange; how to hand over a tangible symbol as a means to communicate what he wants.  With food, we have begun with placing the actual food items inside a ziploc bag (so he can feel the actual pieces of food inside), having him hand it to his partner, and spotlighting the appropriate word that it represents.  He needs to initially learn the concept of one item representing another.  We will not always use ziploc bags for food, but it is a way to start.

I have added a short piece of a video showing how I am teaching him this concept.  Dan helped me this time!

 

Who’s on first?

Thanks to Challenger Baseball, a division of Abbotsford Angels, Cody is on a baseball team this Spring!  It has been fun to meet the special people who have organized this league and all the volunteers required to make it work.  There are definitely angels on the field!

2015-04-11 11.28.46

Preparing Cody for the first day included time with a bat, glove, book about baseball, and a batting helmet.  I like how he chose to put it on!

 

2015-04-08 19.39.20

 

The first game day, Cody spent most of his time on the bench in the dugout covering his ears, really unsure about it all.

2015-04-11 10.27.07

 

He went up to bat twice.  They ordered a special ball for Cody that beeps!

2015-04-11 10.44.15

The second week, Cody had a lot more fun!  Here he is running to first with his assigned buddy (I think the running is his favourite part!)

IMG_5167

 

Here he is waiting on first…first base beeps when you step on it!

IMG_5156

 

I can’t wait to experience the rest of the season with my Angel! 🙂

What do YOU see in the dark?

Us sighted people are so ridiculously dependent on our vision.  It is the be-all and end-all of our existence.  Put us in a dark place when it’s not bedtime and it doesn’t take long before we’re searching for some light, and if there’s none to be found, then for somebody to clutch, or something familiar to hold onto…  Of course by now you’ve noticed and taken a quick look at your pupils right after you’ve shut your eyes tight or after there’s been an absence of light.  Major pupil dilation!  It’s like our eyes are in panic mode, our pupils straining, urgent to soak in any stray ray of light that might be found.

Straining, scrambling, reaching, yearning…for light.  Why are we so uncomfortable in the dark…?

This Easter, when my family was over we blindfolded ourselves and, using Cody’s cane, walked around the house in order to find our own Easter treats.  We all had varying reactions to being in the dark; I was especially aware of keeping an “upper bumper” with my left arm. I did this because even though the cane protects you from waist down, anything from waist up which may be overhanging could surprise you.  I’ve seen Cody hurt in this way.
2015-04-06 18.43.59

My mom started out completely disoriented but ended up with a cheerful celebration when she arrived at her destination!

2015-04-06 18.39.132015-04-06 18.40.07My dad kept remarking over and over, “Wow, this is really much harder than I anticipated!”

2015-04-06 18.22.12

Putting on a blindfold as a person who has used sight their entire life does not simulate Cody’s reality, not even close…but it gives us a taste of the practical challenges blindness presents.  From the moment Cody was born his brain did not depend on sight but on the numerous other senses and pathways at its disposal to gather information and process the world around him.  Us sighted people have used sight from the beginning (although it takes a while for it to develop entirely), we are entirely dependent on it, it gives us by far the bulk of the information needed to process our surroundings.  So, when we are blindfolded and navigating in the dark, our brains are still functioning visually – remembering landmarks and estimating distances visually, using our visual memories to help us figure out the lay-out and structure of objects around us.

2015-04-06 18.16.32

Try to imagine how the brain of a congenitally and completely blind person functions, not based on visual memory but on tactile memory, scents, etc.  Try to imagine how these memories are stored and recalled…it’s hard to, isn’t it?  How I would love to be able to talk to Cody about these things.

As a way to get a small taste of blindness, to gain an amount of awareness and respect for the challenges faced by those living with blindness, I challenge you…  Take one activity today and do it with your eyes closed or blindfolded; whether it be pouring and drinking, brushing your teeth, or walking the length of your house.  Pay attention to how your brain attempts to adapt and what your feelings are.  Let me know…

What do YOU see in the dark?

 

Perceptions

“There are things known and there are things unknown and in between are the doors of perception” – Aldous Huxley

One by one we open these doors, learning about our world based on what we perceive through them as we make our way down the hall towards knowing.  The doors are many, and some need to be stepped through over and over.  I have heard and read over the years that 75%-90% of our learning as a child is through vision.  That means the vast majority of our perceptions, leading to our knowing, is due to what we see around us.

Cody’s perceptions, leading to his knowing and understanding, come from his senses of hearing, touching, tasting and smelling.  What a small sighted child first sees in one glimpse, will take repeated exposure and explanation, within context and with creativity and sometimes great difficulty before Cody will begin to grasp what this sighted child saw in that moment.  And even then, due to how Cody perceives, his understanding and knowledge will always be different…different in a way those of us with sight could never understand.  We as sighted people may never believe his understanding of a bird taking to flight, or the grandness and shape of a mountain, or the vastness of the sea could be adequate or complete without the benefit of sight, but then again…is there a “right” way to understand?  Is there a “right” way to perceive?

I showed Cody today how the rest of us were decorating Easter eggs. He was so excited to come to the table and help.  As soon as he felt the hard boiled egg, he started to become very upset.  When Cody is upset, he bounces up and down on his seat, bites his hand and screams.  Often this reaction means his expectations were not met and he is trying to regulate himself in order to deal with this dichotomy.  I always then mentally list the possible unmet expectations.  Often I don’t realize what it is until much later, or even another day.  It took me about 8 hours or so to figure out what it was today.  I realized I used the word “Easter egg”…”Cody, do you want to come help us decorate Easter eggs?”.  To Cody, “Easter egg” so far has really only meant one thing; the plastic pull apart colourful eggs you buy to be filled with candy and hidden during an Easter egg hunt. Therefore, to Cody, “Easter egg” means “chocolate or candy”.  Peeling the hard boiled egg and putting some salt on it to have him eat it did not help either…hard boiled egg and chocolate are really not comparable!

2015-04-06 14.15.34

With a battery operated beeper placed beside each large plastic egg to act as a sound cue, Cody was able to search around the backyard later and find his true “Easter eggs”!

2015-04-06 17.25.58

2015-04-06 17.27.07

2015-04-06 17.30.13