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Zen and the Art of Raising a Child with Cerebral Palsy

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Zen and the Art of Raising a Child with Cerebral Palsy

  1. 1. Parent Advocacy Zen and the Art of Raising a Child with Cerebral Palsy by Cindy McCombe Spindler March 7, 2013INTRODUCTION THE STORIESIn thinking back on what I have learned in raising my daughter Jillian, now at 1. A Surprising Strawberry – Jillian inching her way up the milestone chart.age nine with a cerebral palsy diagnosis, my mind goes back to a Zen 2. A Strawberry for Mom – Overcoming my fears on assistive devices.Buddhist koan about a strawberry, which I had explored years ago as part of 3. A Magic Strawberry – What’s my role in raising Jillian, again?a college philosophy class. 4. Strawberry Love – Jillian’s first encounter with her stepdad. A man traveling across a field encountered a tiger. He fled, the tiger 5. A Strawberry Like No Other – Jillian morphs from patient into athlete.after him. Coming to a precipice, he caught hold of the root of a wild vine 6. The Other Strawberry Patch – Jillian’s “other” activities are often moreand swung himself down over the edge. The tiger sniffed at him from fun anyway.above. Trembling, the man looked down to where, far below, another tiger 7. Double Strawberries – Jillian’s first best friend and their début.was waiting to eat him. Only the vine sustained him. Two mice, one white and one black, little by little started to gnaw awaythe vine. The man saw a luscious strawberry near him. Grasping the vinewith one hand, he plucked the strawberry with the other. How sweet ittasted! After a group discussion, my philosophy class concluded that the straw-berry represents the present moment, the tiger above represents birth,and the tiger below represents death. The vine means different things todifferent people. The situation, although it seems rather precarious at themoment, represents the middle point one’s in life. It also represents thepresent in any situation. I can conclusively say that it has taken me nine years to get to the pointwhere I feel like I am seeing and eating those strawberries while rais-ing Jillian. We have had our share of challenges. But as I look back overJillian’s life and our evolving relationship, I see that we have had morethan our fair share of strawberries. I’d like to share a few of them with you.Read one or two – whichever seem to pertain most to your life. © 2013 AbilityCatcher | www.abilitycatcher.com
  2. 2. 2A Surprising StrawberryJillian inching her way up the milestone chart.I put Jillian down in her crib, just as I had done many nights before. Although she was certainly big enough to sleep in a toddler bed, I kept her in the crib, as there was no risk of her climbing out of it due to her gross motor delay. Our routines ran deep. One morning, I heard Jillian babbling in her room. Igot up and went to go see her. As I rounded the corner, I saw something un-believable. Jillian, for the first time, had figured out how to stand up in her crib.She had her hands wrapped around the railings and she had stood up! She wasso eager to show me what she had accomplished. It was a moment I will neverforget. My heart exploded with happiness. Not only was I delighted with themove up and to the right of the Denver II, a chart I used to monitor Jillian’s earlysocial, language, fine and gross motor language skills, I was so thrilled with theinner glow that radiated from her. She was so proud of herself. Now that I have the benefit of life experiences with Westley, Jillian’s youngerbrother, I know that it is rare for us parents to rejoice in every one of our chil-dren’s accomplishments. These special celebrations are reserved for thoseparents and kids who had to work harder to navigate these transitions. And thatday, Jillian had done just that. She inched her way up the milestone chart. Jillian’s Age: 1 year, 6 months © 2013 AbilityCatcher | www.abilitycatcher.com
  3. 3. 3A Strawberry for MomOvercoming my fears on assistive devices.I t was time for Jillian to get a walker. The day Jillian got her red wheels, I almost had a sense that she was thinking, “It’s about time!” Previously, I had her enrolled in a preschool class for a few hours at a time. What she foundinteresting was ambulating—pushing chairs around to get from one station tothe other. When we got home from physical therapy, I decided we would go upand down our block to practice. The grade was even, and it would be fun to gooutside to get some exercise and maybe socialize with the neighbors a bit. “This is the first time she has been able to interact with them by herselfwithout me holding her up,” I quickly realized. But what had initially been afearful forethought, quickly turned to something very different. Over the next 15minutes or so, many neighbors came out to greet Jillian—in fact, we talked topeople we had never talked to before. She gave each one of them her biggestsmile. They offered so many words of encouragement. It was crystal clear to meat that moment that assistive devices are great. My fear dissipated just like aneedle to a helium balloon. Jillian’s Age: 1 year, 10 months © 2013 AbilityCatcher | www.abilitycatcher.com
  4. 4. 4A Magic StrawberryWhat’s my role in raising Jillian, again?I was planning a trip to see my family in Colorado. In order to make the trip easier, I wanted to get Jillian new shoes. The braces she wore at that time were cumbersome. It took quite a while to put on socks, strap on the braces,and then tuck the braces into oversized shoes. I also thought that a pair oflightweight shoes might be a good break from the clunky, yet sturdy, system weused to protect her feet and align her knees. I found some sandals. I put them on Jillian, and guess what happened? Shestarted walking. Not just the one or two steps she took before, but many, manysteps. I followed her around in amazement. She walked behind counters, andareas that are generally off-limits to people in the store. The best part of thismiracle was that it was not a medical-based miracle. It wasn’t a miracle derivedfrom scientific data. It was a mom’s intuition. The lightweight shoes are whatshe needed at this time in her life. The braces weren’t put away by any means,but the “magic shoes” were definitely worn a lot that summer. I felt as though Iwas reacquainted with my role in Jillian’s life yet again. Jillian’s Age: 2 years, 10 months © 2013 AbilityCatcher | www.abilitycatcher.com
  5. 5. 5Strawberry LoveJillian’s first encounter with her stepdad.T ransitions are often hard, and my transition from being married to being single again was definitely a challenge. After a few years of getting situ- ated, I decided to brave the waters of dating again. Here’s the story ofintroducing my second husband to my children. I often took the kids to a special park. The plan was that we would all meetthere. As John parked his car, I pointed him out to the kids. To my amazement,Jillian ran toward John, never having met him before, with her arms stretchedout wide and welcoming. She gave him a big hug and said, “I love you.” In fact,she told him this so many times that day, that little brother Westley pulled heraside for a “brotherly lecture” a couple of times: “You don’t love people you don’tknow, Jillian, and you don’t know him!” In the next few hours, we flew kites, rolled down hills, played on swings andslides, and ran through water. We had ice cream. Afterward, we said goodbyestanding next to our cars. Jillian stayed behind for a minute to talk to John. Iwouldn’t find out for several months what she had asked him at the time. WhenJohn later told me, I was pretty shocked and surprised. “Are you going to marrymy mom?” she had asked. Thank goodness that didn’t scare him away! Jillian’s Age: 6 years, 10 months © 2013 AbilityCatcher | www.abilitycatcher.com
  6. 6. 6A Strawberry Like No OtherJillian morphs from patient into athlete.M y husband is an elite marathon runner. I asked him to try to get my son interested in running, and he succeeded. But much to both of our sur- prise, he also got Jillian interested in running. One of the most amazingmoments of my life was running alongside Jillian during her first race. Imagine getting a delicious strawberry where you least expect it. That is pre-cisely what happened on that day. I woke up at 2 a.m. the morning of the race. It was raining outside, but I hada feeling that wasn’t going to stop us. As the sun rose, the family began to stir.We all got dressed, grabbed the signs that we made for Jillian and Westley. Jil-lian’s two requests were that people would be at the finish line cheering her on,and also that they would have signs that had her name on them. We drove toLegoland—the location of Jillian’s first race. I was running the race with her. Jil-lian and I locked hands near the start of the race. It was time to go, and neitherone of us had any idea of what was in store for us. The rain started coming down harder. It made for a supremely scenic run—Legoland in the rain. We kept putting one step in front of another. I realized wewere passing several kids that were Jillian’s age. A few times, Jillian said shewas tired—but she kept going. She never walked a single step. The finish line was closing in. We looked to the left of us and saw some veryloyal family members holding up their signs. We smiled. We crossed the finishline—and we both began new lives. Jillian proved to herself that she could be arunner. For me, a moment of realization came. I saw my daughter morph froma “patient” to an “athlete.” It was a moment I never expected to experience. Astrawberry like no other. Jillian’s Age: 8 years, 5 months © 2013 AbilityCatcher | www.abilitycatcher.com
  7. 7. 7The Other Strawberry PatchJillian’s “other” activities are often more fun anyway.D uring the course of any day, there are times when Jillian needs to do an alternative activity. We were at the Natural History Museum in San Diego one Sunday when that happened. The family went in to see a 3-D movieabout sharks. Jillian made it until she saw her first shark, and then she told meshe had to leave. As she has occasional seizures, I don’t question her whenshe feels as if something will be too stimulating. What would we do for the nexthour? I talked to someone working in the museum, and they told me there was akid’s science show starting in a few minutes. Jillian and I made our way into theroom. We were able to secure front-row seats. After a brief introduction aboutbees, it was clear that the science teacher was going to have the kids act outvarious roles in the bee colony. The first role assigned was the queen bee. “Who wants to be the queenbee?” the teacher asked. Jillian was the first to raise her hand. She was the first picked. She wentbefore all the kids. I tagged along, but only to provide minimal assistance. Jilliangot to wear a tiara. After all the bees were assigned and in costume, Jillian got to throw smallmarshmallows into a beehive. They fed her, they protected her, and theycheered her on as she was in charge of making the colony a larger one. Thekids had a wonderful time putting on this “beehive show”—all of them, includ-ing Jillian. Just as the demonstration was over, my cell phone rang. The moviewas over, and it was time to meet up with the rest of the family. I knew Jillianand I had a story that would make the other children wish they were being “busybees” instead of watching sharks for the last hour. And I sure was right! Jillian’s Age: 8 years, 7 months © 2013 AbilityCatcher | www.abilitycatcher.com
  8. 8. 8Double StrawberriesJillian’s first best friend and their début.I started my career in disability advocacy in August of 2012. I made a concerted effort to network with advocates, and I seemed to have aligned much of the work I do with a non-profit in San Diego called Kids IncludedTogether. KIT provides best practices training for community-based organiza-tions committed to including children with and without disabilities into theirrecreational, child development, and youth development programs. I saw on the KIT Facebook wall that they were going to film a commer-cial on inclusion and were looking for a few pairs of children with disabilitiesalong with their best friends. I let KIT know that I would be happy to have Jil-lian in the commercial, but she didn’t really have a best friend. No sooner didI say that then her first best friend–a wonderful girl name Chloe – entered thescene. Organically, Chloe started hanging out with Jillian at school. Jillian’steacher urged me to contact Chloe’s mother, and her mother was happy thatI did! We all agreed to drive up to Mission Viejo to film the commercial. Both Chloe and Jillian had a blast! I was simply amazed to watch Jillian infront of the group. She was funny, alert, and did whatever was asked of her.She kept looking above her head at the boom microphone. She’d ask, “Is thisthing on?” Halfway through her filming, I could see that the producers hadfallen for her. They saw beyond her disability. They could see the wonderfulperson I get to be with every day. Chloe had an awesome time, too. In the end, several commercials weremade. The goal is to air them to a national audience. When the day ended,both girls had a hard time leaving the building—and each other. (I still thinkthey would be quite happy if they could live at the studio!) Today, their friend-ship continues to grow. I think their example of friendship is a powerful one—perhaps two strawberries will form outshoots and many more strawberrieswill blossom and bear fruit, too. Jillian’s Age: 9 years, 3 months © 2013 AbilityCatcher | www.abilitycatcher.com
  9. 9. 9SUMMARY:Parenting a child with cerebral palsy is a fantastic experience. In a way, it iscompletely freeing. I have been able to let go of expectations and see what theday delivers. Try to think of the strawberry moments in your life. I think if you look hardenough, you could probably come up with one or more per day. Enjoy yourtime—your strawberry moments. Don’t waste your moments, wishing to tradeaway any situation that is yours. Plant yourself firmly in the ground, and becomeone with this experience. Most importantly, happy strawberry picking! ABOUT ABILITYCATCHER AbilityCatcher has a mission to “humanize the way the world thinks and treats individuals with differing abilities.” The stories – both collective and individual – are the collateral behind this business. We are a creative think tank and production company that aims to cleverly and accurately portray rich stories in the ability space through a wide variety of mediums. When a concept or story idea comes to AbilityCatcher, that idea gets placed in the center of a bright room where it can be studied at all angles. Drawing from “Social Innovation” concepts, mental creativity becomes the questioner. What emerges in this process is a “connected difference” where: • New ways of storytelling emerge. • New connections are made between organizational and discipline boundaries. • Relationships are forged between previously separate groups or entities. Contact Cindy McCombe Spindler, the President of AbilityCatcher, at cindy@abilitycatcher.com. © 2013 AbilityCatcher | www.abilitycatcher.com