Patience and Picture Cards

I was going to write about some yummy treats that I made last week for my friends. Next time.

Then, I was going to go on a contemplative photography walk in a new park, exploring the spring flowers and newly budded leaves with my 50mm prime lens. But, that will have to wait, too.

For the past several days, as I fall asleep at night and awake (way too early, I might add) in the morning, I have one thing on my mind—Shane. In my free moments (and even those that are supposed to be filled with something else), I cannot stop thinking about him. The more time I spend with him, the more I see his heart and adore him. Loving him well is deepening my faith, teaching me to listen to and follow the Holy Spirit’s leading and boosting my confidence in living out of how God wired me. He is also challenging my creativity in ways that are profound and exciting.

Caring for Shane is also expanding my skills professionally. And, that might be why I am so excited to share this story with you. The creative process does not only take place in the realm of hobby and leisure. It is not limited to the workplaces of painters, writers, designers, builders or professional photographers. Stay-at-home moms, engineers, data entry workers, custodians, teachers, waitresses and CEOs can also actively pursue the creative process in their 9-5 and experience its transformative work. I am discovering what it looks like to mindfully engage in the creative process in my daily job.

I am a Pediatric Developmental Therapist. That means that I am licensed as a Physical Therapist, nearly certified as a DIR Floortime provider (woohoo!), just registered to take part an intensive TEACCH training and have lots of training and experience in the areas of sensory integration, picture communication and AAC, emotional development, multi-sensory education and early language and communication development. As a practicing trans-disciplinarian, my toolbox is deep and rich and growing. Every day is a practice in creatively digging through my toolbox, trying various ones, tweaking and discovering until I find the few that work the best for each child and his/her family. I love my job!

Back to Shane… Shane is a delightful seven-year-old boy with severe spastic quadriplegic cerebral palsy. I started working with him in March at his school four times a week. With every hour I spend with him and every activity we do together, I see more clearly how bright and special Shane is.

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Unfortunately, he was born in a place where therapy is not very advanced and perspectives are limited. So, even though he is already seven, he has had very limited access to professional services. To my knowledge, he has only received passive physical therapy and special education geared toward children with severe intellectual disabilities. However, the director of his school saw potential in him and assigned me to work with him more often than the other kids on my caseload. I am so grateful for her.

From day one, I made the assumption that Shane’s mind, heart, personality and a mountain of skills are stuck in a body that is incredibly difficult to move and control. I made it my mission to find the right key and release him to be all that he has the desire and potential to be. We tickle, sing songs (Head and Shoulders is a current favorite), dance and twirl in his wheelchair (he loves listening to Josh White!), play “grab the bean bag”, bounce on the therapy ball, blow bubbles, read books and occasionally wrestle. But, one of my favorite activities is teaching him to use picture cards to make choices and communicate. He now chooses what we do every day and when to switch activities. I keep adding new cards for the things I think he may want to say and the pile of cards he knows and uses regularly no longer fits onto the three boards I made for him. This weekend I am finally going to make him a communication book!

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This past week, in particular, I have seen him blossom. His eyes have become brighter, his mind quicker and his body is so eager to keep up. He has even started trying really hard to speak! My heart is bursting with joy and anticipation! I keep sharing my discoveries with his teachers and sending videos to his family, hoping they will see what I see.

I think a huge part of this recent “blossoming”, is the fact that I am addressing so many facets of Shane’s development at once. God created our brains and hearts and bodies to be so integrally connected. When we are not thriving in one area, everything else is affected. Likewise, growth in one area triggers learning in other areas. Movement affects cognition, sensory exploration stimulates communication and joyful play increases motivation and desire to learn. I also think that hope is awakening in him because he understands that someone really sees him—sees beyond his not-working-right body to who he is on the inside. And, perhaps he is responding to my deepening love for and growing delight in him.

I strongly believe God has granted me the opportunity to be an advocate for Shane—first in his family, then in his school and community. My first step is, this weekend, besides making a communication book for Shane, to put together a comprehensive therapy plan for him and make it ready to present to his family next week. The plan will include every major area of development, with goals and tips and resources for the family in each area. My hope and fervent prayer is that this plan starts a conversation that ignites transformation in perspective and practice in the minds and lives of the people who care for Shane. I long for hope to be renewed, giving light to the road that leads into the future. I am even daring to pray that his story has a broader influence and becomes one of many in this city and far beyond.

I am ever-so excited!

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Engaging in the Creative Process

So what has it looked like for me to actively engage in the creative process as I love and advocate for Shane? As I choose activities and do therapy with him each day? As I interact with his teachers and parents?

For me, regardless of my creative medium, the creative process always begins with slowing down, taking a deep breath and stepping back from the chaos of everyday life. I make a conscious choice to stop and notice what is going beneath the surface of things. I am creating space in my heart to listen to what God is saying through my colored pencils, words on a page, people around me, circumstances or directly to my heart.

As I work with Shane, this means that I choose to be fully present—body, mind and heart—as I spend time with him. I see beyond his limitations and disabilities and notice subtle changes in his facial expressions, eye gaze and body movements. I realize his intentional and meaningful attempts to communicate. As I respond to him with acknowledgement, patience, picture cards and playfulness, he becomes more motivated and animated. When that sparkle comes into his eyes, it spurs me to search my toolbox for more ways to help him. What a joy it is think up new activities to try, toys to adapt and experiences for him to enjoy.

I regularly bring Shane and my work with him and his family to the Lord, holding it before Him as I enter the throne room of grace. This is also part of the creative process, I believe—this dwelling on what we notice as we slow down, asking questions, delving deeper. As I pray and consider and listen, new ideas and next steps come to mind. Usually, limited by my experience and understanding, they are things that I would never think of on my own. This is a sure sign that the Holy Spirit is at work.

When I follow through on those ideas and take those next steps, it is like painting swashes of color on a page or finding a new melody as I sing. It’s the part of the creative process where the intangible things we’ve experienced in the previous steps become tangible and take form and shape. I almost always stand in amazement at the result.

Shane blossoms even more and learns new skills. I am affirmed in my choice to listen to the Holy Spirit and follow His leading. It is like Shane’s brain and heart are being healed. So is mine. I watch the familiar truth of Ephesians 2.10 play out in my daily life. God has indeed, with specific intention, formed me from the inside out and placed passions and skills within me. He has equipped me and is calling out the true Allyson (that He created me to be, so often hidden by fear and shame) to courageously walk with Him in all the relationships and tasks He has planned for me from the beginning of time. And, in so doing, I am changed, the people around me are changed and His Kingdom is built. Shane is happier these days than I have ever seen him, his family is beginning to hope and I am refreshed after a dark and difficult season.

The creative process indeed transforms.

4 thoughts on “Patience and Picture Cards

  1. Very moving to think of Shane coming “alive” inside a body that doesn’t respond as you invest in him.
    Praying for you.

    Like

  2. You see his potential. You see his heart. You see his desire to be recognized as a whole person. He sees your loving kindness and never giving up attitude. An amazing partnership you two!

    Like

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