Living Outside the Bubble

Deciding to experience an abundant life allows for the fewest regrets in the end

Article Highlights:
  • A mom of a son with  spinal muscular atrophy discusses how she supported her son's self-advocacy and encourages other caregivers to help their loved ones "live outside the bubble."
by Debbie Button on October 1, 2011 - 12:33pm

QUEST Vol. 18, No. 4

Many years ago, when the physician said that my son Joe, who had type 1 spinal muscular atrophy, perhaps would live until 2 years old, I went into “Rambo mode,” ready to attack anything that got close enough to harm him.

But as the years went by and Joe’s health held stable, I silently vowed I would do my best to allow him to live outside the sterile little bubble I had created around him.

We relaxed and began to enjoy our family life. Joe became the unofficial mascot at our local elementary school, attending every holiday activity in his older brother’s and sister’s classrooms.

When Joe entered kindergarten, he was fitted for a manual wheelchair. His first act of self-advocacy was choosing the color of the seat cushions — fire-engine red. It was indicative of his personality and his passion for life.

Locked doors, new keys

I always assumed Joe would attend kindergarten at the same school as his brother and sister, but we were notified he would go to a special-needs school nine miles away. Joe and I met with the principal of his siblings’ school, who finally agreed to allow Joe to attend there. If Joe had failed to tell me how important this was to him, he would have missed out on attending school with his brother and sister.

Through the school system, we encountered a wonderful network of professionals who enriched Joe’s life. At first, there were those who believed a “cookie cutter” education would fit Joe’s needs. As a young mother inexperienced in boldly speaking out and advocating for her child, I often was frustrated and near tears after our meetings. Then a school professional reminded me that I was the authority on the needs of my child. Once I understood my position, I became a constructive advocate for Joe. Whenever I was getting steamrolled, I told myself, “Joe and I are the experts on determining his requirements.”

At age 14, Joe asked why he wasn’t a participant at Individual Education Plan (IEP) meetings. From that moment on, all of the professionals were invited to Joe’s bedroom for our meetings. School personnel voiced excitement at this unusual conference room setting. Many had never met Joe and some had mistakenly believed he would not succeed in life. From being just a name on a file folder, Joe now was seen as a vibrant young man full of possibilities.

Joe became so comfortable advocating for his needs that he began chairing educational and medical meetings himself. When new medical equipment or services were needed, Joe would invite the proper agency representative to his “office” (bedroom). He would follow up to make sure his needs were met, sometimes drafting letters of medical necessity to expedite the process. After a while, I was no longer needed at the meetings.

We began home schooling during Joe’s high school years because his health and stamina were beginning to deteriorate and he needed to remain flat in bed. When he turned 18 and his friends were graduating from high school, it was apparent that we needed to applaud his success as well. The effort he expended on a daily basis was amazing and shouldn’t be dismissed.

Joe was unable to physically endure the GED testing process, and he didn’t qualify for a high school diploma. I began a letter-writing campaign, from the president of the United States all the way down to local government officials. Joe was personally awarded an honorary high school diploma by Senators J. Robert Hooper and Nancy Jacobs, as well as Special Congressional Recognition by Maryland Governor Robert J. Ehrlich Jr. Without advocating on Joe’s behalf, there would have been no fanfare.

When Joe reached adulthood, we received notice that his medical insurance was terminating, since no one with this diagnosis was supposed to live past age 21. Again we spoke up, and Joe’s primary doctor updated his diagnosis to reflect quadriplegia (due to SMA). His insurance coverage continued uninterrupted.

A door is never permanently locked; it just may require a new key.

No moms at ComicCon

During the transition from high school to career, Joe found his passion for writing. My advice was to begin networking. Through his writing, Joe interviewed politicians, actors, writers, business owners, the media and others all over the world. The computer, which he operated by mouth with a toggle switch, put him on level ground with all of these people.

Except for hospitalizations, Joe was never away from home without me. So you can imagine my expression when Joe was 23 years old (in 2006) and told me he was making arrangements to attend the New York ComicCon (convention). Joe was a prolific writer attempting to make his first sale to a comic book publisher. When he convinced me he needed to be in the company of like-minded writers, I became more supportive of his idea.

Next, he explained that he couldn’t attend this four-day convention with his mother beside him. OK, I needed to digest that also. As long as Joe had a workable plan, I was happy. He hired a nurse and two assistants, purchased the convention tickets, arranged the accessible van rental, reserved hotel accommodations and mapped out the 180-mile travel route. He was thrilled to arrange an introduction to fellow comic book writer Kevin Smith (“Clerks,” “Mallrats”). When he returned, he had stories to tell. Even though it required faith on our part, we were so joyful Joe had this experience.

Joe’s final act of self-advocacy was the donation of his body to medical research. My husband and I were so proud of his decision. There are moments of difficulty with this choice, as there is no gravesite. But we choose to remember that Joe’s decision brings us one step closer to a cure for this dreadful disease.

Don’t let fear get in the way

I’m sometimes surprised that caregivers are reluctant to endorse self-advocacy by their children. I understand that each situation is unique, but I hope my experience may encourage others to allow their loved ones to “live outside the bubble.”

Life inside the bubble seems warm and safe, but imagine what happens when the bubble bursts — total chaos and disarray. If I became unable to provide care for Joe, my goal was that he would be prepared to ask for what he needed.

There are many reasons why a caregiver might choose to make all decisions for his/her child. Chronic illness does not affect just one person — the entire household lives with every decision. Some choices may have life-and-death consequences, or could adversely affect one part of a household while attempting to better circumstances for another.

But there comes a time when decision-making is a component of maturity. Advocating for oneself does not need to begin with life-altering decisions. Perhaps choosing weather-appropriate clothing is a beginning step toward independence, or deciding between mustard or ketchup on your hot dog.

When navigating life with a serious health situation, every day presents new and unique circumstances. But deciding to experience an abundant life will allow for the fewest regrets in the end. Fear is a natural response — but don’t let it keep you from moving forward.

Freelance writer Debbie Button lives in Jarrettsville, Md. She has written a cookbook of easy-swallow recipes called I Can Eat That!, available at debbiebutton.com or by calling (410) 879-7717. Joe Button died in April 2008 at age 25.

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