Fear is real. We all have our share. There are environmental fears, like fear of spiders, fear of barking dogs, fear of the darkness, fear of heights. I have feared snakes all my life and only ever saw a garter snake outside in the grass in my mom’s front garden growing up. The night Rob Feathers and I moved to VA Tech for the summer and sublet an apartment for him to finish school, he stopped in the middle of the road in Palmyra to pick up a “beautiful” king snake to take with us. He was going to hold it in his hand while driving to Tech. I stood on the side of the road at 9:00 at night refusing to get back in the car with the snake. It was early summer, and an elderly woman in a neighboring house leaned out of her window saying, “Honey, get in the car!” as she listened to us argue about the snake.
Snakes were caught and caged in our house. My husband and sons brought them in the house. Sometimes, they escaped. I saw a corn snake move across the bathroom floor early one morning during the first year of my marriage when my husband forgot to close the cage securely the night before. A snake got out in the old faculty house we lived in on Route 15. I’m sure there were many cracks in the house because it never got above 65 degrees in the winter no matter how high we turned up the heat. Rob told me after my parents came to stay overnight to see Kyle sing in a school play that the snake had escaped the week before. We never found it. Once, my two oldest sons brought their ball pythons home from college to stay at our house along with their first load of belongings to move home for the summer. The snakes needed to eat, so they had gone to Charlottesville on that Saturday to buy rats to feed to the snakes. They put the rats in separate Tupperware totes each with a snake. One snake ate the rat. The other one resisted. So, they left on a Sunday afternoon to go back to school leaving the rat in the Tupperware tote with the snake fully intending to check in with their dad about the status of the other snake’s progress on consuming the rat.
Daniel and Dylan did not inform me of their plan. It was parade season, so Rob went up to Fork Union after lunch on that Sunday to help with inspection before the afternoon parade. Diana went with him to watch the parade. Erin stayed with me at home and went upstairs to have quiet time in her room. I realized quiet was not a good sign, so I went upstairs to check on her. I found her sitting in the upstairs hallway dressed only in her pull-up with a ball python in her hands. She carefully had the neck resting in one hand and the bulk of the body curled up in the other hand. She was sitting in the hallway…with the snake in hand…talking to it as if they were deciding what to play next. I ran to my next-door neighbor’s house for help with getting the snake away from Erin, since I couldn’t bring myself to touch it. The only neighbor home was a man who was as afraid of the snake as I was. He followed me back to my house but wouldn’t come upstairs with me. Instead, he stood at the bottom of the staircase encouraging Erin to put the snake down. I finally convinced her to put the snake in an empty Tupperware tub and secured it with a top.
I don’t like snakes.
For many years, Erin would often express a fear of wolves. She would say, “I don’t like wolves.” She would calm herself by saying, “Erin, don’t be afraid of wolves. Wolves live in Alaska (a fact she learned from her teacher, Mrs. Rich). Wolves don’t live in Fork Union.” She would say this whenever she felt stressed. She said it before she went to bed at night and answered her fear with assurances wolves were not near.
We have absolutely no idea of the origin of Erin’s fear of wolves. Once, she petted a wolf (who was someone’s pet) on the Downtown Mall in Charlottesville, never associating it as an animal to be feared. Erin frequently exhibited repetitive speech and directed her thought process to working out issues within herself. It was her way of gathering courage to face a new challenge.
Having Erin was full of facing challenges. This week in my classes at Longwood, we are talking about parents who face the challenge of raising a child with a disability. We are talking about how parents grieve in bits and pieces as they process their child’s limitations in life, realize their dreams for their child’s future must change, and work to figure out how to set realistic expectations and project milestones.
When Erin was a baby, I was determined to do all the exercises with the therapy ball and all the equipment the early interventionist brought to our home. I studied about children with Down syndrome and learned about developmental milestones. I set a goal that Erin, despite her low tone, would walk by the time she was two years old. Erin’s babysitter sat me down one day and tried to make me understand I could not make her walk. Erin had low tone. I could be a part of the process, but I could not control it. I worked hard each day to practice all the exercises the physical therapist taught me to do with her. I was determined but was afraid she wouldn’t catch on.
Erin walked when she was three and a half.
This week, I told my classes about how parents begin to realize what their child’s disability will mean for their lives as well. We talked about IEP meetings and all the parts of the IEP process. I told them how I sat around a big table full of therapists, teachers, a psychologist, and an administrator at Erin’s first IEP meeting. I was told by the psychologist Erin was in the 1st percentile in whatever score mattered as compared to her same-aged peers. My heart sank. I asked how she compared to other children with Down syndrome as a better comparison. The team committed to finding out that information. I drove home feeling sad and felt afraid for her and for us in all we didn’t know about what to expect in her future. I let it be a sad day and let myself feel it. I cried all the way home from the meeting.
I worked with Erin on writing her name. Her teachers worked on it as well year after year. I was afraid about her slow progress. I suggested she use a keyboard as an accommodation in her IEP. Her occupational therapist gently asked me the question, “What if Erin doesn’t learn that an ‘A’ is an ‘A’?” That was another sad day realizing that she might not learn how to read. She did learn simple sight words and to write her name, but I will never forget that day when I had to face her deficits that confirmed my greatest fears.
Life with Erin meant facing fears. We faced the unknowns about what prompted her outbursts, what disrupted her sensory processing, what triggered her repetitive speech cycles that spun into hours of yelling. We kept trying to figure it out. We learned that adding some adaptations into many daily life activities provided a segue to a better place which allowed her to better cope with her surroundings and return to her happy self. One instance of this was when we went to the circus at the coliseum in Richmond with the girls when they were about six years old. We had to wait in a long line to get through the gates with our tickets. We were inside the building and the general noise of excited children and occasional high-pitched squeals evoked a negative reaction from Erin. The look in Erin’s eyes as she gripped Rob’s neck was one of fear and confusion. She was so excited to be at the circus and knew she was spiraling downward. I remember visibly seeing her body relax as the lights went down and her smile and giggle return as the show began. We learned from that experience to take headphones with us to similar types of settings…such as concerts where she loved the music but had to adjust to it slowly.
As parents, when Rob and I would fear something of this nature happening with Erin, we’d say to each other, “I don’t like wolves”, which meant that something might happen, but we were going anyway and would tag team to deal with it. We knew where we were going would be a great experience and one which Erin and the rest of our family would enjoy. We knew Erin wanted to be a part of it. We just had to be on top of things and work through the triggers.
Facing fear requires a willingness to adjust to and accept whatever happens. We learned to scoop Erin up and go into the normal activities of daily life with her in tow. What I remember most are the times she leveled and settled, allowing herself to feel the joy of the experience and allowing us to feel it with her.
Facing and overcoming the wolves in our lives is worth the work.
Sorting it Out... 