100 Pegs In A Board…and other important life skills

I had a completely different post in mind to write tonight when this article caught my eye on Facebook, http://drzachryspedsottips.blogspot.ca/2013/07/teaching-functional-skills.html

It’s refreshing to read a post about teaching, learning, skill acquisition and what is really important – and how that often gets lost in our efforts to set measurable goals and standards for our special needs children in order to assure ourselves that they are indeed ‘learning’.

This article made me think of a few experiences in working with different therapists, and teachers, to help Kate learn, to teach her, to facilitate skill acquisition. I often had moments (and still do) where my mom instinct tells me that ‘this is not right’, that what we are teaching her isn’t important, that it is the wrong direction for Kate. Even more so, I had those moments of intuition and realization that Kate wasn’t ready for some of the skills that were being ‘taught’ to her and that her lack of cooperation and ‘inability’ to attend to the task were simply demonstrating that she wasn’t yet ready for that type of learning, or that they method used for teaching wasn’t one that would work for Kate.

Kate and I have worked with 11 different therapists over the past 5 years. She started with occupational therapy when she was 9 months – we paid privately as the early intervention list she was placed on had a one year waiting list. When we did access occupational therapy and physiotherapy for Kate, we never seemed to manage to hang on to particular therapist for more than a year. Caseloads would change, therapists were switched around, and Kate (and I) had to adapt each time. I lobbied hard to keep a strong therapist when I met one, but it took me some time, and my own learning, to understand who was good and who wasn’t as good.

* Unfortunately this lack of continuity has persisted as we have entered public school, and I have to mention it because the lack of continuity for a deaf, non verbal child with multiple special needs and medical complexity absolutely astounds me (insert rant on bureaucracy here).

I remember one early OT session when Kate was supposed to bang on a drum with a wooden stick (she was 10 months old). Kate had just learned to sit – barely. She had (has) very low tone and had to prop herself with one leg while sitting, leaning to one side so she wouldn’t topple over. Kate didn’t seem to be enjoying the activity the OT had planned, but the OT insisted that Kate participate (as much as you can insist to a 10 month old). This session she had brought along a therapy table and chair, the type that had a cut out in order to slide a chair into the table. The chair itself had belt straps to ‘help’ Kate sit and keep her focussed on the task. At the time, I thought this was a good idea. Let’s really get Kate to pay attention. I was eager for her to ‘learn’ to acquire skills. I was still in that mode of defying her disease and it’s impact on Kate, and I wanted to fix her still. Whatever the OT suggested (and she had good intentions) I was willing to try and to pursue in an effort to help Kate catch up.

In retrospect, it probably wasn’t such a great idea for Kate and more importantly it wasn’t what Kate needed. That chair caused her great stress. It was clearly uncomfortable for her as it lacked proper support for her, and she was so upset by it that any learning moment was lost. The skill of banging that damn stick on the drum was lost to tears and screams and flailing arms.

 

I understand that sometimes we do need to push through and work on things that are not easy for Kate. But now these teaching moments are carefully planned. They are built around skills or activities that Kate is already familiar with, or supported by activities that she finds easy. We then carefully plan to ‘stretch’ the difficult activity so that Kate learns to push through her frustration for a short period of time. At the same time we are careful to gauge where Kate is on that particular day from an energy point of view, and what her disease will permit her to be capable of. I am VERY grateful to the incredible auditory verbal therapist that Kate has. She has known Kate the longest and she has taught me how to slowly teach skills to Kate. How to nurture learning in Kate and how to approach teaching her. I know she has learned a lot from Kate at the same time, and she is still learning. There really has never been anyone like Kate (she has told me), and we have to be ready to adapt. It’s like pennies in the bank – someday they will pay off.

It’s like pennies in the bank – some day they will pay off.

 

This is something I have held close to my heart since the first time Kelley (Kate’s AVT) used this phrase. There has never been a truer phrase when it comes to teaching Kate. Kelley and I worked closely for more than 3 years together (1-2x/week) before Kate started to show signs of comprehension of language or used her first ‘word’. Now as the words and other skills are coming, albeit still very slowly,  we celebrate more frequent small wins along the way. It took a long time to get our reward, and it still comes slowly and often after long periods of waiting.

I remember wondering if Kate would ever say ‘mama’, and if I would ever hear Kate’s voice. I remember wondering what Kate’s voice would sound like. It really wasn’t that long ago a year, maybe a year and a bit. And when ‘mama’ happened (first sign and then in speech) I glowed. The word was important, but the skill was also amazing. The skill to make that word, to make herself understood to her own mother. Amazing.

And that’s where this article truly resonates with me and reminds me of what I have come to find the most important in this world of therapy.  Yes, there are skills and they are important in setting the groundwork and framework for learning. Our children will find them difficult and we have to support them through it, recognizing how they learn, and pacing them so that we are meeting them when they are in readiness to learn and matching them in what they are capable of learning day-to-day. What is equally important is learning to live in this world with the challenges they have.

I would love for Kate to learn her ABCs, to sing the ABC song with me and learn the little tune that goes with it, but right now what is more important to me is that Kate learn her name and how to spell it. I would love Kate to learn the days of the week and the months of they year, but my focus is on her understanding what rain is, what the sun is, the wind, the snow. I would love for Kate to say ‘I love you’, to be able to tell me where she hurts or what hurts when she is sick.

 

How Kate learns has been a roller coaster of learning for me. A skill acquired, then lost, then picked up again, only to regress during/after an episode of her disease. It is a daily challenge, and has taught me incredible patience (which I am still learning). It has also given me a real appreciation for how Jack learns. I am grateful to him for showing me how ‘typical’ learning and skill acquisition occurs. Although every child is different, there is a true pattern and rhythm to how we learn – especially to how children learn. I remember being amazed at the words Jack would have at a young age, the concepts he would understand, the joy in discovering and exploring with him in those very early years when learning seemed to be so fast and furious. I am careful not to compare Kate and Jack, but at the same time it’s only natural to do so. Jack’s learning was effortless, Kate’s has not been.

What is really important in learning is understanding how to navigate in this world of ours, whoever we are and wherever we are at. For Kate this is understanding that it’s not ok to run into the street, and not so much that she can sort shapes.

I am still going to work on that shape sorting with her, and color matching, and drawing lines, circles, faces, and rolling/cutting play dough. I still understand the need for the fundamentals, but as she nears the age of 6, I want her to understand and be able to interact with her world more easily and independently.

 

 

Julie

 

 

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