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

 

 

 

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.

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

 

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!