Written by Dorothy Baroch
It’s December 14, 1959, less than twenty-four hours after the birth of our first child. Thomas Edmund Baroch sleeps peacefully in the nursery of Albany General Hospital, unaware of the future chaos and challenges he, and our family, will face. Down the hall, in the maternity ward, I am in tears. The doctor has given orders that I may not hold my son, “because he has some problems that Dr. O’Neill will discuss with you,” said the nurse. Thoughts, queries, and worries roil through my brain. What could be wrong?
Exhausted from a long labor and a difficult delivery, I eventually fall asleep. When I wake up, the nurse tells me Dr. O’Neill would like to talk with me.
I watch him saunter down the hall, stop at my doorway, and knock. He leans against the door frame seemingly unable to step across the threshold. “Dorothy, your baby has a major birth defect, and probably will not live. If he does, more than likely he’ll become a vegetable. I recommend that you and Ed put him in an institution and go about raising the rest of your family.”
After some questions on my part, the doctor explains that Tom was born with Spina Bifida (myelomeningocele) and probably hydrocephalus. His spine didn’t close properly and there is a sac with nerve endings that protrudes through the opening of the spinal column. That undoubtedly will create multiple problems throughout his life, if he lives at all.
I listen attentively, trying to absorb words and concepts that are unfamiliar to me. With tears streaming down my cheeks, I look at the doctor and say, “Thank you for the advice, Dr. O’Neill, but Tom is a gift from God and belongs with us. We’re taking him home. Will you help us?”
That began the first thread of advocacy, a thread which would be woven into a tapestry of love, support, and service within and beyond our family, a tapestry that would spread across four continents.
Learning, Support, Advocacy, and Undeniable Love
How did we, parents in our early twenties, cope with a child who required major surgeries, repeated doctors’ visits, and a constant, watchful eye? Ed was a young father and husband, beginning his career as a metallurgical engineer. At age twenty-two, I lived 3,000 miles from my parents and sister. Out of necessity, I learned to seek and ask for the support which my new, young family needed. Friends from our parish became like family. Workmates of Ed were helpful and caring.
I was determined to seek the best medical advice and guidance that I could. Phone calls to doctors and medical facilities and questions addressed to friends and sometimes strangers, opened one door after another, as I began what seemed, at times, to be a career in advocacy. Eventually, we built a medical team that saw us through surgeries, frustrations, and the challenges which come to a family that deals with physical disabilities.
Two more children were born and eventually a third was adopted. Steve and Vickie were healthy children, as was Mary who came to us from Korea. Ed and I decided after Tom’s birth to make our family life as normal as possible. We did not coddle Tom; we accommodated his problems but didn’t allow them to overshadow his talents and abilities. We traveled, went on family camping trips, taught him to ride a bike, and allowed him to play any of the games he felt he could play. Ed even bought him a Pogo stick. While that may have been a mistake, since Tom’s balance was not good, it was another normalizing act—a statement that he was “just a kid.”
Mary (left), Dorothy (center), and Tom (right)
Growth, Transition, and a new Advocate
Eventually, we involved Tom in decisions about his health care and taught him to advocate for himself. At age ten, and after discussion with his orthopedic doctor, Tom was emphatic about his desire not to wear the leg braces he’d had on for years. We encouraged him to seek advice from competent people, primarily his physicians, and to work with us in making important decisions about his health.
Self-advocacy became part of his life. His sojourn at a prep school, located fifty miles from our home, provided opportunities for maturing. Like his young mother years ago, he didn’t have immediate family at his beck and call. After some trial and error, Tom learned to ask for help, to make his own decisions, and to carve his own path.
That path led to self-determination, which Pacer’s National Parent Center on Transition and Employment describes as “…a combination of attitudes and abilities that lead people to set goals for themselves and to take the initiative to reach these goals. It is about being in charge but is not necessarily the same thing as self-sufficiency or independence. It means making your own choices, learning to effectively solve problems, and taking control and responsibility for one’s life. Practicing self-determination also means one experiences the consequences of making choices.” http://www.pacer.org/transition/learning-center/independent-community-living/self-determination.asp
Tom chose a different educational path, taking a year between high school and college to work and travel. He applied to and was accepted by, the University of Nevada Reno and Arizona State University with a goal of being a Physical Therapist. He chose Reno because it was his father’s alma mater and because it was closer to home. Math and science became stumbling blocks, causing him to realize that he was geared more toward the humanities than science. Once more, being away from family, living in a dorm, and making his own lifestyle choices offered more options for maturity.
Launching a Career, Ongoing Volunteering, and another Transition
He returned to the Northwest, found a job working for an accountant, saved some money, and began a two-year program at a community college in Portland, Oregon. Tom graduated with an Associate of Applied Science Degree—Sous Chef. Four years later, he attended Washington State University’s School of Business, completing their Hotel and Restaurant Administration program. He received a Certificate in Conventions and Meetings Management.
Volunteer service played a significant role in Tom’s early life, from being an altar boy at his local church to participating in the Columbian Squires organization (junior Knights of Columbus) to being in the Junior Search and Rescue division of the Linn County Sheriff’s Office. As a teenager, he was often chosen to be in a leadership position, including that of the president.
Fast forward to his adult life. Tom found his niche in the non-profit world when he attended the 1996 national Spina Bifida Conference in Phoenix, Arizona. “That was the first time as an adult that I had meaningful interaction with others directly affected by Spina Bifida. It changed my outlook as a person with a disability, and motivated me to consider how I could advocate for others with disabilities.”
New threads were woven into the family tapestry of service. Self-advocacy and self-determination were now joined with the concepts of national and international advocacy. These qualities encouraged Tom to work with the Spina Bifida Association of Colorado, eventually becoming board president. That led to his acceptance on the national Spina Bifida Board, and eventually as the United States representative to the International Federation for Spina Bifida and Hydrocephalus.
His professional and volunteer careers encompass multiple aspects of the non-profit world, where his advocacy skills help others in need. Those skills are now being used to assist us, his aging parents—teaching us how to weave our way through the medical quagmire that has been an integral part of his journey.
Life has come full circle for the Baroch family.
Tips for Helping Your Child Find Independence:
- Teach your child to make appropriate choices within boundaries, (to self-advocate) can begin early in their young lives. For example: lay out two or three outfits from which the child can choose. You’re happy with any one of the choices; your child has made his/her own decision.
- Inform your doctor that you want him/her to talk to the child as well as to you during a medical visit.
- Involve your older child in scheduling visits to the doctor. Keep a calendar available and let the child choose the date and/or time within the options you and the doctor’s office have agreed upon.
- Teach your child about making healthy decisions—gathering facts, asking the opinion of competent people, looking at the consequences of a choice. (“Now, if I did this, what would the results be?”)
- When your teen is at the point where s/he is ready to transition into adulthood, make sure you teach the youth—to the best of their ability—about insurance coverage, prescription costs, how to make a claim. Let them work along with you when possible.