seasons of life

Like our earth on its axis, we are meant to rotate through the many seasons of life.  On our journey from birth to death, our minds and spirits change as we grow in body and experience.  My 16 year old daughter and I were recently looking ahead to the year after next, when she completes high school.  We talked about her plans and hopes and spoke of the practicalities of learning how to live and function independently in this great big world.  I experienced anxiety as I imagined my daughter, who once had to hold my hand while we crossed the street, now walking the streets of a big city on her own.

The other day I watched a mother struggle with her toddler son at the grocery store; her fatigue and exasperation evident as she tried to console and bargain with him so that he would stay seated in the grocery cart.  I remember thinking: She won’t have to do that forever.  I imagined them years down the road, coming to the grocery store together and talking about what they would make for dinner, a young boy fully capable and independent.  He would’t need to be seated in the cart any longer.

When I hear or see new moms exhausted from sleepless nights, diaper changes, feedings, and taking care of a being who is completely dependent, it reminds me of when I was a new mom to my daughter.  It is exhausting!  It feels like it will never end, but all of a sudden your child is potty trained, and all of a sudden they can clean up after themselves in the bathroom and change and dress on their own. They can start feeding themselves and walking on their own in public places.  The baby grows and changes, the natural seasons of life transpire and responsibilities ease.

I’ve had a group of adults with differing abilities come to the library regularly for a social literacy time.  These are men and women, in their 20’s and 30’s who spend their days with caregivers in a day program.  In the evenings and on weekends they live at home with their parents or foster parents.  We spend our time learning how to write each other’s names, how to read simple sentences, how to complete fill in the blanks.  We talk about animals, about airplanes, friendships and outer space.  The topics and tasks we do are very likely the same as they did 10, 15, 20 years ago.  They have not experienced the natural cycle of seasonal change in their lives.  They have not experienced romance, post-secondary education, marriage and children, professional careers.

I take Cody to the playground and I watch him, a big 13 year old boy, sitting at the top of the slide sometimes scared to go down.  I remember doing this with him 10 years ago, 7 years ago, 4 years ago.  I hear Cody up sometimes at 3am, upset about something…or still wide awake at 12 midnight.  I remember the stress of these sleepless nights when he was a baby, I remember it 8 years ago, I remember it 3 years ago.  I help him clean up after himself in the bathroom and I remember doing the same thing when he was 3, when he was 7, when he was 11.  I help him eat a food which is tricky to use a spoon with and I remember doing the same thing when he first started eating solids, and each year after that.  I try and calm Cody during a meltdown.  I remember doing this when he was 2 years old, when he was 5 years old, when he was 12 years old.

I remember doing these things and I realize I will be doing them for many, many more years.  I realize that though the rest of the world grows and changes, much of what Cody is will not.  I think one of the aspects of living with certain disabilities that is the most difficult to accept is this: There is no natural cycle of growth and change.  Things stay the same.  When everything in your being yearns to see change and growth, you realize that in many ways you are stuck in time.  It goes against every natural inclination, every natural force within.  And when things don’t change, fatigue can weigh heavy, despair can creep in.

I imagine what it is like for Cody.  He is 13.  He has already experienced puberty.  His body has shot up and outwards in all the ways it should for an adolescent boy.  He has urges and hormones. He experiences his increased strength and that his peers are changing too.  All the while, his mind for the most part stays the same.  His abilities to speak, if anything, have decreased.  If it is difficult for me as his mom, I try and imagine what it is like for him.  How does it feel to experience the passing of time in your body and in your world without being able to move with it?

My intention is to help Cody grow and learn, it always will be.  But I have to accept that much will always stay the same.

 

 

family vacation to the happiest place on earth…Together

As you walk down Main Street you are filled with sights and sounds of happiness.  Smiling Cast members, Disney characters waving, children exclaiming and pointing, Disney music that seems to be embodied by the very buildings and sights around you,…and inside you, your heart sings.  Disneyland!  I’m actually in Disneyland!  As you approach the central square you are welcomed with an iconic statue titled “Partners”, framed in colorful flowers and trees blossoming, with Fantasyland as it’s backdrop.  The figure of Walt Disney, holding hands with Mickey Mouse, waving and welcoming everyone.  Underneath you read the following inscription, Walt’s own words:

“I think most of all what I want Disneyland to be is a happy place…where parents and children can have fun, Together.”

Partners

Partners

I had thought of bringing Cody to Disneyland a few years back, when Dan and I took Jessica for her first magical visit.  I built up my courage a little…only to back down and decide to leave him with my parents, back in Palm Springs where we visit yearly over Spring Break.  We had a magical time of 2 days there, …but Cody wasn’t with us.  The “Together” wasn’t there.

Several years later, and another plan to visit Disney and Mickey emerges.  This time I feel courageous, my parents will join us, I have some ideas and tools I will use.  We spare no expense.  We rent a house in Anaheim, close to the park…with a heated pool and hot tub for Cody to enjoy.  I figure we’ll need to have short days at the park and will need an oasis of rest to return to.  We rent a house with enough rooms that we all have space; space for comfort and quiet. Dan brings his nephews from Alberta (aged 13 and 15); flies them in to join us on their first trip out of Canada.  This time, we will be together when we go to Disneyland…Cody will join us.

There is definitely anxiety as we lead up to this trip.  Many questions and “what if’s” that I try to first reconcile and some which I choose to ignore.  We are a group of 8, and I desperately want each one of these 8 to be happy.  It’s a lot of pressure.  Mostly I worry about Cody.  The crowds at Spring Break are crazy; the noises and closeness to hoards of people inevitable.  The busy and almost frantic pace at which one needs to plan out the day at Disney; the fact that Cody is constantly needing food, the challenge of using public washrooms with him, the line ups…and the list goes on. How will a 12 year old non-verbal, blind and autistic boy handle it all?

I speak to him about the park far in advance; the noises, the people, the lineups, the heat, the music, the rides.  He quietly listens each time…no indication of excitement or anxiety.  I decide to rent a wheelchair each day.  Cody can walk, but his idea of walking is very different from those of us sighted people.  Walking is largely about taking in the sounds around him…he stops frequently to cock his head and listen.  He revisits little bumps and curbs and drain holes by wanting to turn around and walk over it repeatedly.  He doesn’t have the visual motivation to walk long distances to reach something interesting he would otherwise be drawn to.  By using a wheelchair, we can keep a steady walking pace, not having to worry about navigating him and his cane through the crowds.

I also bring his noise reducing headphones.  When he feels overwhelmed by the noise, these reduce the steady sensory input, softening it a bit so he can use his resources for other purposes…as opposed to having to process the noise.  I pack lots of snacks, I bring extra clothes, I bring a couple of his favourite fidgets and an extra little blue blanket.  I give him information about what he can expect; we talk about everything I can anticipate he may experience based on my previous visit.  I tell him about the different rides and how he will get in and out, how he will sit and how one of us will always be beside him.  I tell him about how some rides are very loud and shaky. I explain that to get to the park and home we will be in a different vehicle each time, using Uber as a form of transportation.  He loves cars, but he is familiar with ours, his dad’s and Papa’s…not those of a stranger.  I talk about how line-ups work and when we will have food, that there are bathrooms and times we can sit and rest in the shade. I show him the wheelchair that first day, let him run his hands over all the parts of it and explain it’s purpose.

I research and plan to use Disney’s Disability Access Pass.  It gives us the ability to reserve our space in line, all 8 of us, for each ride.  For many rides, they let us through the exit and we are able to get right on.  We will skip many 1.5 hour line ups each day.  Lineups which would have been impossible to tolerate.

…And then we are there.  We approach the magical gates, the big clumsy group of us, wrapped up and enveloped with our hopes, dreams, anxiety, excitement, love, fear and joy.  Will this possibly be what I dream it could be; for Cody, for all of us?

Walt Disney was a remarkable man; filled with all of these same feelings; full of life and aspiration.  The creations he dreamed up and brought to life have touched and continue to touch millions around the world, including us: from a 15 year old girl who can’t wait to buy her lightsaber, to a 42 year old mom who can’t wait to spot Winnie the Pooh; from a pair of grandparents who can’t get enough of Splash Mountain to 2 teenage boys from Alberta who have never seen a Palm tree, and, who after seeing the intricacies of each ride can’t believe “how they did that?!”; from a loving fiance who just wants to have fun (because he’s just a little boy at heart) to a 12 year old boy born totally blind, with autism and no ability to speak.

Walt, your dream came true; for us it truly did.  Cody absolutely loved each and every one of our 5 days there; in fact, I think he loved it most of all of us.  He was eager each day to go once again. He gave us his happy noises and body motions; smiled and jumped and flapped his hands at the mention of the next ride.  He crawled bravely in and out of each crazy ride, trusting us as we told him where to place his hands and feet and how to climb in and out.  He was resilient and had remarkable tolerance to the noises and all the crowds.  Whether the ride turned you upside down, rocked you side to side or up and down, whether it spun you in circles or took you for a lovely ride through Alice’s Wonderland…Cody loved it and did it all. After exiting a ride, he would often have a delayed flurry of excitement; jumping, smiling, giggling…his “Happy Dance” we call it.

Perfect place for your Happy Dance, Cody.

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Another year of learning

On the first of this year, my boy turned 12. Another year of growing and learning together; discovering what the limitations and the possibilities are, experiencing their pain and their joys. Reflecting on the year and looking forward, these are some thoughts…

His body is changing, his emotions are often at a peak, he is experiencing his sexuality, he is stronger, and he has a will to exert his independence.  This year he really started to show this by pushing me away when I tried to help, by letting go of my hand as we walk down the street or in the mall or into his school – wanting to go it alone.  I am learning to increasingly back off and let him express his growing sense of self and capability.  I try to remind myself to keep my hands from directing him, to limit my words of instruction, to let him experience his sense of dignity and respect, his need to be in control of his own body.  I realize how important it is for me to continually give him the tools to be independent.

His desire to be courageous and experience adventure is increasing. What I used to see more as resistance, I see now more clearly as uncertainty and fear.  He wants to try new things, and his attempts to initially reject them are not a sign of disinterest, but a sign of genuine fear.  I am learning how to give him more time, to encourage him with words that empower: “You can do this, you are strong, you are brave…”  Together we’ve experienced the sheer exhilaration of conquering his fears together and the pride of accomplishment; the value of which cannot be measured.

He is learning how to manage change and transitions to a much greater degree.  His adaptability this year was severely tested.  With his changing body and the hormones which accompany that, to the change in school (and all the incredible changes this represents from teachers to classmates to schedule to building), the birth of his half-sister Kate and the change in dynamic that represents, to my change in schedule as I graduated from university and started working way more than I ever have (Mom’s not around as much, more caregivers, more transitions).   He struggled through the spring and summer with regular bouts of depression and self imposed isolation which tortured me.  But he kept plugging along.  He emerged from that period and pushed himself through all the changes and transitions.  He grew stronger because of them and has embraced the new school, the new family, the new realities around him with success and admirable courage.

He is increasingly ready to learn and it is up to us to engage him, to adapt materials for him, to make what we teach him relevant and meaningful to him and to the way he sees and processes the world. He is clever and keen, eager and willing.  This means our responsibility is great.  We have introduced a new tactile language. He caught on to it exceedingly quick.  We have devised new curriculum for him at school; involving self care skills in the kitchen, community, hygiene and independent travel.  We try to bring learning to him in a tactile, concrete, relevant way.  This is a constant challenge; it takes creativity and out of the box thinking, it takes a team that is committed and on the same page.  It continues to be a work in progress.

For me the year has been full and rich; full of hard work, disappointment, pain, sadness, impotence…but rich in love, joy, pride, tears, and exhilaration.  I am learning that often there is no solution, there is only the struggle and ability to let things be.  “It is what it is” often runs through my mind.  I won’t always be able to help him or know what is wrong, but he can always know that I’m here, I’m loving him, and I’m trying. I am learning that when I do find a solution, I am tenacious and dedicated and have endless energy towards ensuring it is implemented.  I am appreciating the amazing sense of accomplishment that comes with a job well done.  I am learning to accept work that doesn’t get done; the books on autism which still lay unread and unstudied on the shelf, the learning activities yet to be tried, the ideas yet to be implemented.  I am learning to accept that on many days it is not about learning together; but about being together, enjoying the present for what it is, simply taking the smiles and the closeness as a gift unto itself.

 

This year in pictures…

IMG_0611 Family-Photos-Feb-2015-16scropped IMG_0688 2015-04-11 10.44.15 2015-04-26 12.37.28 2015-04-26 13.34.53 HDR-2 IMG_1409 Cody3 IMG_1109 IMG_1166 BallThrow2 hallway2 photo1 tmp-22 IMG_3076 IMG_1712 IMG_1457 IMG_1616 - Copy IMG_1667 Portable Schedule CodyonMom'sPatio IMG_1802 IMG_2035 Cody pumpkin 2 IMG_2323 Cody and I

 

 

 

I met a Mom the other day

I met a Mom the other day

She has a special boy, just like me

Though we’ve never met, I know her

 

As she gestures with her hands, I know those hands

I know those hands of care, tireless hands which have cleaned and clothed a boy too old to need help

I know those hands of love, gentle hands that have wiped the tears 

 

I know her shoulders that hang low, fatigued from effort, exhausted from discouragement

I know those eyes, wet from tears that try not to fall

 

As she tells me her story, I know that spirit

I know that strength and stubbornness, the tenacity that never quits

I know that fire and ice, a spirit that can move mountains

 

I know those arms she wraps around me in a hug

Strong arms which have lifted a boy too old to be carried

Weary arms which have handled heavy loads

 

As she talks of her choices, I know her mind

I know the thoughts that toss and turn inside, the questions that never stop

I know the sharpness and clarity, the focus of her mind as it finds an answer

 

I know those legs that would walk the earth for her boy

I know those knees which have hit the floor when she feels she can go no further

 

As she speaks of her son, I know her heart

I know it’s bruises and cuts, the pain that it has carried

I know its infinite love, how it beats and swells at the thought of him

 

As she opens up about some recent good news, I know her joy

I know her sigh as she breathes out relief, letting go of worry

I know her hope as she tells me he’s going to be okay

 

I met a Mom the other day

Though our stories are different, they are the same

Though we’d never met, I know her

 

Sadness

Sadness is here again my love

I see it in your shoulders as you let out a shaky breath

I see it in your face as your cheeks begin their familiar quiver

I see it in the soft pout of your lips

I see it in the tear that leaves its streak as it falls down your beautiful face

 

 
 

Sadness is here again my son

Why has it returned so soon

Is it unbidden, a feeling without a home

Is it a desire left unmet, a hope without words

 
 

Sadness is here again my boy

Why does it descend once more

Is it light and fleeting, or will it sit heavy and hold on

Is it a memory of something that once was

Is it a dream of what will never be

 
 

Sadness is here again my love

Why does it push me away from you

Does it not know a mother’s arms are meant to hold

Does it not know a mother’s words are meant to soothe

Does it not know a mother’s kiss removes the tears

 

 
 

Sadness is here again my love, and it closes your door

Does it not know that I am still here

Does it not know that my heart still lingers with yours

Does it not know that it is no longer yours alone

Sadness is here again my love

 

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.
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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!”

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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.

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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?