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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the boy and his blanket

The boy and his blanket

The boy and his blanket

The boy and his blanket are never to part

(As he was to realize later on in the years, it was never just one blanket…for such a thing of security cannot afford to be lost with no replacement)

The blankets used to be full-sized receiving blankets, with baby elephants and blue cars which held no appeal

It was their soft feel and adaptability which he liked, fitting so snug next to him when he went to sleep at night

 

As he grew older, the baby blankets were exchanged for strips of checkered navy blue flannel, a more “grown-up” look…

…strips the lengths of which were cut in half the following year – for large blankets aren’t practical for a growing boy busy at school

With busy hands at work and play, soon the blanket found a temporary home in his front pants pocket

A handy spot to keep it, while knowing it was still there within easy grasp  – safe and sound till it was needed once again

And, to be sure, it was definitely needed…even as he grew to be a bigger boy…again and again and again

 

Needed as that soft absorbent cloth, the kind that cleans his nose so easily…the kind that wipes his tears so perfectly

The pliable napkin that gets rid of that little bit of food he can feel on his cheek, or the juice which dribbled down his chin

Needed as that quick reassurance that although things around him change, his blanket remains

It only takes a quick hand into his front pocket, a quick tug and it’s free to tell him – I’m still here, it’s okay

…many things change, but many stay the same

 

 

It is not always easy to keep a hold of, for this blue blanket often is in the way

The boy’s diligence and patience for doing so only serves to prove his grand affection, for there is rarely a time when he lays it down

Not even if it means placing it under his left armpit while he puts deodorant on his right

Not even if it means holding it in his mouth while he grabs his clothing with both hands to dress

To be sure it accompanies him at mealtimes, finding it’s place between his right thigh and the seat of his chair

 

Parting with it is such sweet sorrow, the daily exchange can be one of intense emotion

For when the dirty one goes in the laundry, the new one is not quite the same…

…for throughout the day, this blanket gathers aromas – aromas which are like treasures to the boy

Aromas of his tears, smells from what he enjoyed at snack time, the accumulated moisture of a day

…gone to be washed are the memories of his hours, the essence of comfort and security

 

No one will likely understand fully what this blanket means to the boy

One only has to observe him to see its priceless value

The way he smiles at its touch, and places it to his nose as though he were smelling the fragrance of a rose

When he reaches for it and it is not found, the way he calls after it…

How if the search takes too long, there is a panic, a painful cry, a sorrowful longing

Before he walks out the front door to face a new day, the way the boy reaches into his pocket

Is it there? Yes, it is…and it’s going with him

…For the boy and his blanket are never to part

 

 

 

 

 

 

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…

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climbing

Some time ago, Cody’s Occupational Therapist and I were having a conversation about Cody’s future.  She wanted to get me thinking about what types of activities, hobbies and interests Cody might have when he is an adult.  What will he do during his downtime when he is 25?  40?  65?  What types of activities will bring him enjoyment, enrichment, improved physical health, a sense of accomplishment? In thinking about this, I realized that it is my job and that of others in his life to expose Cody to many different possibilities; just like we do with all children…in the hopes of sparking a flame and finding experiences and aspects of this life which resonate, motivate and inspire.  Not just for now, but for years to come.

One such idea is climbing!  He responded so well when we took him to the creek a couple of times and guided him as he traversed up and down the boulders surrounding the stream.  It was obvious he has a sense of adventure, that he is not scared to try challenging activities, and that the pride radiating from him brings so much joy.

Dan and I figured we’d introduce Cody to climbing at the local climbing gym.  My idea is that slowly but surely we will build in him the sense of security, familiarity and capability from improving skills so that he can perhaps enjoy this challenging activity in increasing levels for years to come!  The thought brings a smile to my face.

We had our first visit to the gym this weekend.  It was evening, just the 3 of us and we had no sense of urgency or need to rush the process.  When I was helping Cody get ready to go at home and was talking about what we were going to try, he was thrilled.  Smiles, giggles and bursts of jumping told me this kid is ready for adventure (even though he had no idea what was in store).

The noises, smells and textures of the gym are very unique.  There was a young boys’ birthday party going on in one corner and they were whooping and hollering as they raced up the wall in pairs repeatedly.  Cody immediately plugged both his ears.  The floors are uneven, with 1-2 feet high mats dispersed throughout.  Cody didn’t mind the mats, in fact he quite enjoyed exploring them and the feel of them as he walked.  The air is stuffy and the slight smell of sweat permeates the space.  The dryness of the chalk used on the climber’s hands seems to have infiltrated the air we breathe. There is a nervous excitement as the 3 of us try to determine the best way to begin.

Dan figured we should start with bouldering; perhaps for a few sessions – climbing without any harness or ropes so that Cody gets the feel for how his body should lean forward, against the wall face, not depending on the harness or ropes.  We start by standing beside the wall, showing him the holds and talking through the process of climbing.  We let him feel me as I climb up a few feet, then Dan.  My goal is getting him to put one foot up on the first hold, hold on to 2 holds with his hands and push up so his weight is on the foot hold entirely.  I figure if we can get him this far, it would be a success for today.

When we first try putting him into position and try to place his hands and feet on the wall, he resists…biting his hands, screaming out and pushing us away.  He does not, however, pull me in an attempt to leave, he does not say his familiar phrase “back to the car” (which is hardly discernible, but oft repeated whenever he wants to escape a situation), so I know he wants to try…but he’s scared.  I remember once again, that he’s blind…he needs lots of time to explore first; to listen, to feel, to arrange his thoughts.  Why do I want to push through this part so often I wonder to myself?  It’s hard to be patient, to give space and time…to wait him out.  I ask him if he wants to sit on the mat which lies at the bottom of the wall for fall protection.  He smiles as he sits down and reaches all around with his hands; slapping the mat, feeling how it gives as he pounds it and the texture of it as he strokes.  He sits and listens to the activity around.

I tell him these words; words he has so often heard from me that seem to bring calm and safety:  “Cody, I know this is hard.  I also know you can do this, and that you want to do this.  We will wait for you.  Take the time that you need, and when you’re ready we’ll be right beside you to help.”

Many moments pass and all of a sudden Cody goes from complete stillness to a flurry of activity.  He bolts upright and reaches out in front of him to the wall, searching for the hand holds and reaching up with his foot for the first foot hold.  Dan and I burst into action; guiding with our words and our hands…giving Cody the support he needs to push through his fear and climb.

Climb my amazing and brave boy, climb and climb and climb.

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Making School Meaningful; the dreaded I.E.P.

If you are a parent with a child who has special needs, do you know what they do all day at school?  Do you know what goals they are working on and what activities make up their day?  Do you know that they have the resources they need to calm and regulate?  Do you know if they are getting the fresh air and physical exercise they need?

I.E.P., otherwise known as Individualized Education Plan.  I called it dreaded because it can spark fear and loathing in us as parents.  The document itself is long, wordy, complicated…overwhelming.  The process of writing it means sitting down at the table with the school education team, feeling at times alone and unsure.  We are the parents, but we count on these people to know what to do with our child…and yet, we know that school can always be better than what it is.  We know that we have to be their strongest advocate and ensure that school is meaningful for them, and we know that the school team has a lot to learn.

So yes, it is dreaded, but as I’ve begun to realize in the last years, it is also an amazing tool and opportunity for us as parents to take a lead role in ensuring that school is meaningful, effective, and enjoyable for our children.  I wanted to share a few tips I have learned along the way.

  1.  There is never enough time in the meeting itself to cover everything.  It is often the only opportunity the whole team has to speak together for several months if not more.  So, I always do advance work before the meeting.  I look over the last IEP and make notes on each goal and objective.  I use the following questions as tests as to whether the goals and objectives should be changed or taken off entirely:  “Is it meaningful, is it functional, is there an end result which Cody will relate to and which is measurable?  Does it relate to Cody’s life in a relevant way?”
  2. A question one of Cody’s teachers posed which I agree with when considering IEP goals/objectives is: “What do you see Cody doing in 5 years?  What do you hope he will be able to do and understand on his own?  And in light of these, what does he need to be working on now?”
  3. Research, research, research.  I spend time online and emailing other professionals across the continent about what Cody should be learning and doing in school.  What are other children similar to him doing?  What types of adaptive equipment and technology are they learning to use?
  4. As part of my preparation, after I have reviewed the goals and objectives and determined what I hope to see in place, I email my initial thoughts to particular members of the team (both in and out of school) to get their initial feedback and to ask them what they feel we should be focusing on this year.  Often particular team members will have particular areas that they work on and particular goals which fit in their scope.  For example, I corresponded with Cody’s Occupational Therapist prior to the meeting, reviewing gross and fine motor goals, self-help skills and sensory needs.
  5. I ensure that members of Cody’s team outside of the school are part of the IEP process, such as his Speech Therapist and his Occupational Therapist.  Having these out of school professionals proves invaluable time and again.  They offer fresh perspectives and ideas that neither you nor the school team may have thought of.  They know your child in different contexts and know them well if they are working regularly with your child.  School based therapists often only are available as consultants, there is little resources within the district to receive regular therapy within the school setting.
  6. I email the teacher or Team head (whoever is running the meeting) and let them know that I would like to have some time during the meeting to address my thoughts and hopes for the year.  I want them to see my passion and hopes for my son, hoping that it will inspire and motivate.  This year I started with “My hope is that when Cody wakes up on a school morning he will wonder “What will I explore today that is new?  What will I discover that I can do today all by myself?”  I prepare notes on goals and objectives, take note of specific activity ideas for school learning, and think of special adaptive requests I may have for Cody.  I make a checklist which I take to the meeting which I can review before the meeting is through to ensure I have addressed everything.  Sometimes, after initial introductions, I just take over.
  7. If I have specific requests for adaptive equipment and activities I would like Cody to have access to in school, I not only mention them at the meeting but I also put them into writing and email them to the teacher and school team as well as the principal if applicable.  It is always best to have these requests in writing for later reference.  If I believe strongly in my request, I will rarely take no for an answer, instead I seek out the person who can say “yes”.  This may be the principal, it may be the district Special Education director, it may even become a political issue if nothing else works (I have yet to get to this point!).  Often written support from therapists hired privately is very helpful.
  8. I ensure that the IEP goals and objectives have built in accountability.  We need to track the successes and failures so we can continue to mold the IEP into a document that best helps Cody
  9. At the end of the meeting, if possible, I have outside therapists take a look at the classroom(s).  I ask them for any feedback they may have on lay-out, safety and sensory issues.
  10. I become the team leader…as you can see from above, most all of these tasks I do in preparation are technically those that the school team leader should be doing.  They should, they would like to, but they just don’t have the time or resources to…at least not to the degree they should be, not in my experience.
  11. I believe in the team.  I remind myself that they all truly want school to be meaningful for Cody.  I approach the team meeting as just that…a Team.  We are a team coming together for Cody’s benefit.  This means we have respect for each other’s ideas, we consider opposing views, we speak with respect to one another, we plan together, we commit to our various tasks and to being accountable to one another.

We want our children to succeed in school as in life.  School is this amazing world of opportunity; 6 hours each weekday which is paid for, with trained and motivated staff, resources and activities. As parents, we can take a lead role in ensuring those hours are well spent!  We can take advantage of the dreaded IEP document, mold and shape it into one which empowers our children, motivates staff, provides a map to follow, and meets our special children exactly where they are at.  By doing this, we are telling them and the world that they are infinitely valuable and infinitely worth every effort we can make on their behalf.

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

 

when I can’t be there

When I can’t be there with Cody, others step in.  This is not an easy process.  Whether it is for the new job I just started, past part-time jobs, my schooling or otherwise, finding respite workers and leaving Cody with them has always been a challenge.  There is always the anxiety, especially with somebody new.  There is always the wondering; will they understand his attempts to communicate, will Cody feel cared for, will they engage him in meaningful activities and opportunities?  Will they really see and appreciate him for who he is; his strengths and potential?

For any of you who need this type of respite care, I thought I’d share some of the tips I’ve learned along the way.

  • Write a detailed Job Posting which includes: a description of the job, the rate of pay, the job duties (be specific), characteristics you are looking for, and other considerations.  If your job posting is professional and reflects high expectations, you will find that those who apply are also professional and meet these expectations
  • Advertise the job posting to people who are passionate about working with the special needs population: volunteers at events and organizations who work with special needs children, staff who work at summer daycamps and organizations for children with autism and other special needs, Teachers Assistants who may have after school or summer hours available, and students and graduates of the Community Support Workers diploma
  • Always get 1 or 2 references and create a list of questions for them about your prospective worker: What are their strengths? What are their weaknesses?  Any areas of concern? Did you like how they interact with children?
  • When introducing your child, never be ashamed of who your child is; talk about their uniqueness and quirks matter of factly…with pride even!
  • Don’t shy away from the more intimate or difficult/awkward issues around hygiene and puberty – be mater of fact and open
  • Invite them to spend some time with you and your child – they will take their cues from you and how they see you interact with your child
  • Let new workers shadow other workers you feel confident in both in and out of home – they will pick up tips on how to interact and motivate your child
  • If possible, have them quietly observe therapy sessions; they will pick up tips and ideas for how to interact and teach your child
  • Set up a dropbox folder which can be shared with all respite workers and updated as needed, containing: a personal dictionary (your child’s body language, sounds, words, gestures and actions, what they mean, and how to respond), philosophy of how you want them to interact with your child and what your goals are for their times together, ideas for activities around the home and outside of the home, current school and therapy reports so they know what your child is currently working on, a list of likes and dislikes and practical information they need to know
  • If there is a behavior or communication which the respite worker cannot understand or doesn’t know how to handle, have them take a video of it so you can discuss it afterwards
  • Keep a book for two-way communication for easy reference

Currently, here in BC Canada, I have some support for respite care through a couple of sources.  The first is through the Ministry of Children and Family Development.  It is called “Direct Funded Respite Benefits” and it is available through the At Home Program which requires you to meet particular eligibility guidelines.  In BC, this is the link for information: At Home Program – Respite Benefits

Another source of respite funding, to be used while I am at work or school, is funded also by the Ministry of Children and Family Development, and is accessed through various community agencies. Mine is through the Fraser Valley Child Development Centre.  It is called “Supported Child Development Program”  Here is a link to more information: Supported Child Development

Although it is not an easy process, handing Cody over to other capable respite workers has been a learning, growing and enriching experience for both Cody and I.  We have come to know so many amazing people; like angels who step into our lives – showing Cody care, igniting new passions and ideas and creative approaches, introducing Cody to new experiences, bringing companionship and friendship into Cody’s life.  Cody embraces all of them – those who are open and willing to invest in him are rewarded with his affections, attention and friendship.  He will often bounce off his chair at their knock on the front door, race to open the door, reach out to hold their hand and pull them in…eager and ready to face new adventures together.

 

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Spending time riding the escalators at the mall

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Bowling with Maren – his first time!

A new language

January 15, 2015 I wrote an email to the teachers and therapists who work with Cody which started with the following words:

“I am just continually hitting this point of despairing over the fact that Cody cannot express himself properly to us and as a result has to experience what must be such an incredible sense of aloneness and frustration”.

With this began over 6 months of planning and implementing to create an alternative form of communication using tangible object symbols.

Over 200 emails among team members, and dozens of me reaching out to professionals for advice and ideas across the continent.

Over 20 hours spent in meetings and sessions discussing, planning, brainstorming, problem solving and training.

13 people involved as a part of Cody’s team.

Dozens of hours of research online, over the phone, and in person.

Upwards of $1000 spent on materials and tangible objects (symbols/cues) for home use.

$2480 spent paying consultants and therapists.

Numerous trips to the thrift store and dollar store hunting for ideas, objects, materials.

Countless hours spent crafting and creating cues, including the messy work of mixing epoxy to cover food items in several layers of varnish to be used as cues.

Unknown amount of money and time spent by the school team creating and planning the system for school use.

Dozens and dozens of texts with Cody’s dad, planning and giving tasks as we created cues and brainstormed together.

All these people and resources used to create a new language for Cody…the value of which is priceless.

So, what is this new language?  Sighted children who struggle with speech may be taught to use picture symbols, a system called PECS (Picture Exchange Communication System).  Due to Cody’s blindness, we’ve had to develop tangible symbols instead- each representing an object or activity or person of meaning to Cody.  Once these symbols are created, we begin the process of teaching them to Cody by using them repetitively in his daily routines and incorporating them into his daily schedule.  Through regular exposure, we teach him the symbols, with the goal that down the road he will know them well enough to use them expressively in order to communicate with us what is on his mind, what he is thinking of and requesting.

Poster 1

Here is a poster created with pictures of some of his symbols; a type of dictionary for easy reference for myself and others who work with Cody at home

Poster 2

A second poster of symbols.

Portable Schedule

Tangible Object Symbols Schedule. The drawers hold his symbols. The bins at the top represent in sequence the activities of his days. The black bin on the right side is the “all finished” bin. Cody and I set up his schedule each morning. They will have a similar one in school for him in the Fall and his Dad has one in his home as well.

Portable Schedule Drawers

Here Cody and I are setting up his schedule for the afternoon.

This video shows what we do when one activity is done and we are moving on to the next.

A secondary learning activity we are using with Cody involves his Choice Board.  On this, we are teaching him to choose his preferred food or activity from a choice of 2 – 3 different ones.  He is learning to do this by feeling each symbol, identifying his choice and then passing it over to his partner.  It is not until he places it in my hand that I can acknowledge he has communicated.

Choice Board

This is his choice board in his room. The grey foam strips work to separate each selection. Some of the tangible cues are mounted onto green cards. They are all fastened with velcro so they can be pulled off and placed back on. Although this board shows 9 possible choices, we are still working on between 2 and 3 choices at one time. The symbols on the green cards are actual food items which I’ve covered in several layers of epoxy/varnish. In this way the shape and some of the texture remains and they are preserved.

Here is a video of Cody and I using the choice board so he can communicate his choice.

Although as a team it feels like we have traversed a mountain to get this far, I know we have much further to go.  But, my feelings of gratitude and awe to have come to this point are overwhelming. Coming from that place of despair in January, and arriving at this place of beginnings, hope and promise fills me with pride and joy.  I am so fortunate to have an amazing team backing me up, to have Cody’s dad and stepmom firmly on board, and to have such a clever and eager student in Cody.  He has approached his learning so openly, so patiently and diligently.  It is apparent to me that he’s been waiting for this, for his chance to be heard.

Dressing

Cody’s congenital blindness and autism has resulted in developmental delays in all areas.  This includes cognitive, speech, social, emotional and physical development.  Physically, he is delayed in areas of motor skills such as gross motor (big movements) and fine motor (small, more detailed movements with fingers and hands).  These motor delays as well as his dual diagnosis, make basic daily living skills and self-care much more challenging for him to learn and for us to teach.

It is very typical for children with blindness and other special needs to be delayed in self-care, and this is even more the case because us as parents tend to compensate and do too much for them, for various reasons!  I knew a consultant I visited in Cody’s early years who really tried to encourage me in this area.  She worked with children, youth and adults with varying degrees of visual impairment teaching them Orientation and Mobility skills.  Many of the clients she had did not have cognitive delays and, as is typical, were very strong in school and academics.  She would remark on the dichotomy she often witnessed; youth who were getting straight A’s, but who still didn’t know how to get dressed on their own.  Parents were doing all the work, making sure their child was on time for school…yet in doing so were encouraging dependency and a complete imbalance in development.

Objectively, as a parent, it is easy to see that this is unhealthy.  But, practically, it is very hard to remain diligent and consistent in teaching them to be independent.

I have a fantastic Occupational Therapist who has been helping me set goals and teach Cody in various areas of self-care.

One of our goals is in the area of dressing.  He has come so far in the past year!  We started by regularly having him explore the parts of a shirt; the neck, the sleeves, the body.  We also did the same with shorts and pants.

We then used a method called “backwards chaining”.  This involves slowly adding challenge and difficulty, but starting from the end of the action as opposed to the beginning.

If we are to break down the action of putting on a shirt, it would look like this:

  1. Grab shirt from drawer
  2. Place shirt on bedside with the proper orientation
  3. Locate shirt and figure out orientation using touch
  4. Insert arms in the correct place and reach for sleeves
  5. Pull arms through sleeves
  6. Grab shirt by collar and pull over head
  7. Pull down shirt to cover body

In backwards chaining, I help Cody with steps 1-6, and then wait for him to do step 7 all on his own.  Once he’s mastered this, I help him with steps 1-5 and then wait for him to do steps 6 and 7 entirely on his own.  In this way, we continually move backwards and he experiences the pride and accomplishment of success step by step.

At this point, Cody has mastered steps 7, 6, 5, and 4!  We are working on perfecting step 3.  Teaching step 2 (Place shirt on bedside with proper orientation) will be especially challenging.  We will have to figure out a way to make the front and back of the shirt tangibly distinct.  This involves good tactile sensitivity as well as strong fine motor skills.

Here is a video of Cody getting dressed this morning.  As you can see, he finds a lot of joy and pride in his ability to do this much on his own!  At this point I lay out his shorts and shirt for him before he sits down to dress.

 

This video represents many, many hours of discussion and work for Cody’s therapist, myself, family and of course Cody himself!  It sure is worth it to see that smile and to hear those squeals of delight! Good work Cody!  We’ll keep at it, you and I and the others that care for you.  And one day, you will do each and every step, all on your own.

 

 

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