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

 

 

 

And I left my tears there

Some days the tears come, and you let them spill, and you hope for renewed strength and grace…today was one of those days, and I was lucky to have friends with me.

Today a sheep witnessed my tears

It stopped its grazing and raised its head

its ears perked up and its eyes found mine

We stood still

 

Today the sky witnessed my tears

Its winds surrounding me

Its rain falling round me

Its waters merged with mine

 

Today a mare witnessed my tears

White coat like an angel

Big eyes soft and inquiring

Beautiful figure of strength and grace

 

Today a tree witnessed my tears

Strong trunk rising before me

Long branches as a canopy

Dying leaves falling beside me

 

Today nature witnessed my tears

Peaceful in its constant motion

Quiet in its deafening roar

Today nature witnessed my tears…

And I left my tears there

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.