During this time, we lived at the Ida Farmhouse, a wonderful setting to raise a family and place where my parents built all kinds of opportunities for Gay and I to grow, learn, and socialize. Like many families this place was our bubble. We lived in the farmhouse that my grandmother was born and raised in, with a big old barn and 10 acres of land. We had a field in front of house for growing hay, usually 2-3 horses in the barn, a chicken coop, lots of gardens (some for fruits and vegetables and some for flowers), a glider swing from a tree, a shed, outdoor doghouse with a fence, lots of cats wandering about, and a long ramp and rubber pathway for Gay to get in and out of the house and roam past the gardens. It was a beautiful and peaceful setting.
Gay went from middle school to early adulthood, and I went from late elementary through high school. School and church were the center of our social lives, and we had many families and friends in our lives as you’ve read about in other blogs.
I remember these years (7-17) as time of my own growth intellectually and socially. I was an avid reader for school and pleasure and some of my personal favorites were J.R. Tolkien’s Lord of the Rings series, Stephen King, and Dean Koontz. I loved fantasy and horror books, and it wasn’t unusual for our family to watch cartoons on Saturday morning and scary movies in the evening. I also learned to play the piano, took baton and ballet lessons, and started riding horses at the age of 2. Equestrian life drew me in the most, and by high school, was my primary hobby/activity. It provided me with both physical activity, personal challenge, and ways to escape into my head on a long ride down a country road. Being in 4-H brought opportunities to compete and socialize through weekend shows where I would ride western, English, stake race, barrel race, and eventually learned the art of dressage, figuring out how slight shifts in my weight and body spoke to my horse (Hawk, a beautiful black and white appaloosa). And I gained some fun friends to hang out at the horse shows, overnight 4-H events, and ride our horses into a pond at the riding arena on a hot day.
School was important to me from an early age. Kindergarten was a challenge with a teacher who didn’t want me to speak about “sad things” (referring to my sister) and I had trouble with speech. I was homesick the first day of first Grade but my teacher, Mrs. Wilson was amazing, and it is through her that I came to love academic work. She was the most memorable teacher until I hit 6th grade and had the stylish Ms. Butler who brought the world to our classroom and inspired some early ideas of feminism, of being a woman, smart, and accomplished. During that same time, I tested into the gifted and talented program at Ida, challenging my intellectual abilities and trying to learn French, Spanish and other advanced subjects. Focusing on school and trying to be a good citizen earned me a Student of the Year award. By the time I was in 7th grade, my parents and I both realized I needed advanced academic challenges to stay focused in the classroom and avoid getting in trouble. We started researching all-girl academies in the area and after taking an exam, I was accepted at Notre Dame Academy in Toledo.
My high school years were a mix of heavy academic rigor (the nuns promised minimum of 4 hours a night studying, or you weren’t doing what you needed to do) and staying connected with my Ida friends through church and square dances. I remember coming home from school, riding my horse, and then after dinner spending a lot of my time alone in my room studying every night. I was also very active in Gay’s life spending time at special Olympic events, dances at the Intermediate School, participating in canoe-a-thons to fund raise, and she came along to those horse shows, too. We had a tradition of dinner together most nights and there I would often hear about all about her life at school and everything my parents were engaged in.
Gay was age 11 and turned 21 during this time. Her education and social life were just as robust as mine with dedicated parents pushing and advocating for her growth and development. She went through intellectual testing by the school psychiatrist and determined her IQ was that of a five-year-old, but the psychiatrist did think she could read. That led to a series of attempts to assist her with reading and talking. At one point she was typing and my Dad made her an acrylic guard where she punched the keys on her keyboard through holes in the plastic guard. For a while she had book cards to communicate what she wanted with pictures and words. I remember when we would go to eat out, my Mom encouraging Gay to use her cards to order. This often left the server a bit confused at first, but many of them responded positively and engaged her. The cards also helped Gay outline her task for the day.
Gay also used a method of communication, bliss symbols, for a while. What was interesting about this method (used for persons who have difficulty communicating), is that Gay picked it up easily. It was harder for my parents and teachers to pick up and it had to be on tray on her chair which was physically limiting, so Gay didn’t use it for long. I remember it left me wondering what Gay could understand in her mind in comparison to what she could readily communicate to others.
My parents had to be Gay’s voice for many things including the Individualized Education Program (IEP) at school, initiated as a result of the Individuals with Disabilities Education Act (IDEA) of 1975. Occupational, speech, and physical therapy were all a part of Gay’s educational program at the school. Gay needed a great deal of support physically to get her out of her wheelchair, standing to strengthen her bones. To stand she needed braces that evolved from metal rods to plastic molds (age 14) and had to be designed carefully to prevent pain points and sores. My Dad built her the first standing chimney and those took various forms throughout her life as technology provided better fit and function.
With the support of her wheelchair and braces, and my parents, Gay also led an active life. Participating in the Special Olympics and winning 5 ribbons one year (wheelchair race and softball throw) and like me, joined 4-H and the Stepping Stones therapeutic riding program to ride our horse Winterhawk with a custom saddle to hold her up and protect her(built by the Univ of Michigan team who provided her braces, the first one they ever built). She even became Stepping Stones Queen and rode a float through the Monroe County parade! Gay was physically active through swimming as well, in our pool or through the local ARC. She also had a riding glider that hung from a large tree in our back yard that was designed for her to lay down and swing. And while she couldn’t operate an electric wheelchair safely, she did have various forms of scooters that allowed her to venture down pathways or the rubber mat sidewalks my parents created in our yard. One of the paths took her to our apple trees where she even picked her own apples with great glee.
In order for Gay to be able to do all these things and keep her body stretched and flexible, my parents had to fight to keep physical therapy as a part of her school day. The ISD was struggling with finances and wanted to cut Gay’s therapy to one day a week. I have one of many letters my Mom would write over the years advocating for Gay’s needs. It was 1981, and they were trying to reduce Gay’s physical therapy to 1 hour a week, which did not meet the expectations of her doctors at the University of Michigan clinic. In this letter, my Mom is also advocated for other children, suggesting that the Physical Therapy portion of the Education center remain staffed for children with physical education needs. This would be the hallmark of my parents’ lives, not only fighting to meet their child’s needs but supporting the needs of people with disabilities from childhood through adulthood.
As an adult with a career, family, and extended network of friends, I am amazed by what my parents did in addition to their responsibilities as parents. They truly stretched beyond their comfort zone to try to get politically involved and make change. My Mom was President of the Monroe ARC , an organization of families advocating for their loved ones with developmental disabilities to be able to stay in their homes and not be institutionalized. As part of her involvement with HOME Inc., she was part of building some of the early group homes in the Monroe area and then my Mom was trained by the state ARC to evaluate homes for adult persons with disabilities (reviewing 22 homes in the area). As part of her work with the association, she helped organized the local Canoe-a-thon that raised money for the ARC. I loved participating in those events. Eventually my Mom ended up on the governing board of HOME Inc., served as coordinator of the ARC monitoring program and the first Executive Director of the Monroe, ARC. In addition to the rigors of the advocacy work, my Mom cultivated a garden for our food, made many of our clothes, and was host to many holiday parties and events since it was difficult for Gay to enter and navigate other people’s homes.
My Dad was also politically active, overcoming his introversion and shyness. My Uncle Norman Capaul, previous owner of the Capaul Funeral Home in Ida, was on the Intermediate School Board in Monroe and when his term was ending, he convinced by Dad to run for election. My Grandfather had served as the first Coordinator of the Special Education program for Monroe County and has a flagpole at the Monroe ISD in his honor. The superintendents at 7 school districts in the area voted for my Dad and he ended up serving on the board for 13 years, serving as Vice President for one term. He was also President of the ARC for three years. In addition to that service, my Dad worked 6-7 nights a week at the GM transmission plant in Toledo, farmed our property (I used to help him bail the hay), and was quite handy at building and repairing things around the house.
Both of my parents regularly participated in testimonies to local, state and national leaders about their experiences as parents and advocates. Their political activism, and at a young age personally witnessing the community’s misunderstanding of people with disabilities as scary and potential harmful to others, shaped my passion for equity and justice as I became an adult. And through advocacy with state and national government leaders, people like my parents pushed the changes that would come at the end of this time in our family’s life with two major changes in legislation:
The 1986 reauthorization (Public Law 99-457) addressed early intervention and mandated that individual states provide services to families of children born with disabilities from the time they are born. Previously, these services were not available until a child reached the age of three.
The 1990 reauthorization (Public Law 110-476) changed the law’s name from EHA to the Individuals with Disabilities Education Act, or IDEA. It also added traumatic brain injury and autism as new disability categories. Additionally, Congress mandated that as a part of a student’s individualized education program (IEP), an individual transition plan (ITP) must be developed to help the student transition to post-secondary life.
The next blog will be about making those transition as Gay and I became adults during the time these acts were instituted. I will talk about how these changes influenced our family’s advocacy for Gay’s rights, her independence, and our own lives. Thank you for reading and being a part of our story!
Notes ARC Website:
In 1950, little was known about intellectual disability (then referred to as ‘mental retardation’) and developmental disability, or its causes. There were virtually no programs and activities to assist in the development and care of people with IDD or to support families. It was common for doctors to tell parents that the best place for their child was in an institution. But these advocates wanted more. They wanted their loved ones to lead fulfilling lives in the community and not be shuttered away in dark institutions. Emboldened by their collective desire to raise their children in the home and their refusal to accept that institutionalization was the only option, The Arc was born.
Through the decades, The Arc has advocated for the passage of state and federal legislation on behalf of people with disabilities and established a broad network of state and local chapters that range from small voluntary groups to large, professional organizations.
On November 29, 1975, President Gerald Ford signed into law the Education for All Handicapped Children Act (Public Law 94-142), now known as the Individuals with Disabilities Education Act (IDEA). In adopting this landmark civil rights measure, Congress opened public school doors for millions of children with disabilities and laid the foundation of the country’s commitment to ensuring that children with disabilities have opportunities to develop their talents, share their gifts, and contribute to their communities. The law guaranteed access to a free appropriate public education (FAPE) in the least restrictive environment (LRE) to every child with a disability. Subsequent amendments, as reflected in the IDEA, have led to an increased emphasis on access to the general education curriculum, the provision of services for young children from birth through five, transition planning, and accountability for the achievement of students with disabilities. The IDEA upholds and protects the rights of infants, toddlers, children, and youth with disabilities and their families.
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