Recalling my grandmother's experience raising a special needs child fills me with gratitude as I walk the same pathThoughts of Ma come to me these days as I raise my daughter. Rosa, whose name was given to me in a long ago dream, is my 12-year-old big girl. She has Asperger’s Syndrome, a condition that is an Autism Spectrum Disorder (ASD). According to Autism Speaks, ASD is characterized by varying degrees of impairment in communication skills and social abilities, and also by repetitive behaviors. Symptoms range from mild to severe. One milder form of the disorder is known as Asperser’s Syndrome. Rosa is smart. She is an excellent reader and has a rich and creative imagination. At first glance, she appears “normal,” but soon you see that she appears to be in her own world. Muttering to herself, she often spins in circles to keep calm. She seems content to be alone but secretly she longs for relationships with her peers. Other children stare at her and mostly stay away. The pain in my heart when I witness this is nearly unbearable, until I think of Ma. When I was a little girl, my grandmother, Cora (Quarnas) Pember was known only as, “Ma.” That short one-syllable name, however, described more than a mere woman. In my childhood eyes, she was like one of the elements, an immutable force into whose lap I climbed to hear her sing in Norwegian. Her songs hung in the air, clear and crystalline, often taking my breath away. I see now, however, that Ma was simply a woman and mother. Like me, she struggled to help her special needs child navigate the “typical” world.
Her son, my dad Charles Gordon Pember, was born near the corner of Truth and Charity Streets in Shullsburg, Wisconsin in 1916. The lyrical names of his childhood homes in Browntown, Gratiot, South Wayne and the long ago forgotten hamlet of Dill belie the pain of his birth. His clubfoot frightened his young parents, who were 1st generation Norwegian and Welsh immigrants. When he contracted polio at age, 2, however, they were torn apart. My grandfather George Pember or “Pa,” to us, was an inveterate gambler and fled the family home. Ma took her only child to Shriner’s Hospital in Minneapolis and found jobs nearby cleaning houses. My dad recovered after a couple of years in the hospital but developed scoliosis, severe curvature of the spine.
This bond I share with Ma fills me with awe of how she faced a world without IEP’s, (Individual Education Plan) IDEA,(Individuals with Disabilities Education Act) FAPE (Free and Appropriate Public Education) or occupational and physical therapists, a world in which it was okay to call out, “cripple,” or “hunchback,” when her son walked down the street.
Ma’s education was limited. English was her second language, yet she knew in her guts that her son deserved the same opportunities as his peers. I’ve heard it told that when her sisters would complain that she should help her child as he struggled to perform tasks, she would state firmly, “He’s got to learn to do things for himself or he’ll never get along in the world!”
Despite early suggestions that he might be better off in an institution, Ma stood firm. Pa returned and he and Ma worked various farms “on the halves,” (sharecropping) near the Pecatonica River to ensure my dad could attend school. Ma had a saddle maker fashion a leather brace for her son so that he might stand up independently.
Gordon, as he was called, thrived and returned to his notoriously naughty self, once almost chocking his grandfather by dropping a handful of popcorn into the man’s gaping, sleeping mouth. According to family legend, the cry “Get this young’un away from me Cora, he’s try’in to kill me!” was a common refrain from my great-grandfather.
Gordon graduated from Browntown High School and went on to marry my mom, Bernice. Perhaps over compensating for his disability, dad was a little wild in his youth, eager to prove he was equal to typical men.
Fortunately for Dad, my Uncle Don was also on his way to the men’s room. Although drunk himself, he saw that all my dad needed was a little help and offered him his hand. After getting to his feet my dad said, “A hundred men stepped over me before you came along. By God, I’m gonna buy you a drink!”
And, so according to my mom, “they were off to the races.” Dad started hanging out with Ojibwe who have first hand experience in struggling to get to and stay on their feet in more ways than one. They are a little less eager to judge another man’s limits.
Uncle Don introduced Dad to my mom, a 19-year-old single mom fresh off the rez. They married and after a beery celebration weekend in the wild town of Dubuque, they made a life for themselves. Dad worked hard, harder than most men. I think he was always trying to keep that niggling suggestion at bay that he might not be as fit as typical men. He was fiercely insistent that although he might be different, he was never less.
He addressed his disability with great pride and dignity and a huge dose of wicked, dark humor. He loved to embarrass the “normal” citizenry; especially men in leadership positions whom he felt were riding a bit too high in their authority. Dad would sometimes pretend to be mentally challenged. It was remarkable to see how many people assumed that his physical disability included a mental disability. During the opening of a new supermarket in our area, Dad kept offering the officious manager a bottle of pop. The man waved him away dismissively, demanding, “Someone take this creature away.” Later, the manager was horribly embarrassed to learn that the creature was in fact Gordon Pember, a respected local businessman.
I think of how lucky I am to have my big girl in a day and age in which it is no longer acceptable in polite society to openly exclude and taunt the disabled. Like, Ma, however, I share the struggle of ensuring Rosa has access to the same educational and life opportunities as her “typical” peers. The world of mainstream education seems so temptingly close, yet as anyone who has a special needs child can attest, it can be light years away.
The truth is that public schools, especially those in rural districts, are strapped for funding. Regardless of the tenets of the IDEA and FAPE that guarantee a free and appropriate public education for disabled students in the least restrictive environment, staff and resources are often simply unavailable. According to the National Center for Educational Statistics, rural schools typically depend more on state funding than city and suburban schools, which are typically able to draw support from a larger and richer property tax base. Contrary to popular perception, rural education is no longer on the decline according to an article in the Harvard Graduate School of Education. Between 2002-03 and 2004-05, rural enrollment has increased by more than 1.3 million students. Nearly 10 million children attend schools in rural places.
According to the Harvard article, rural schools are struggling to provide services to specialized populations, including students needing special education. Although the capacity of services may be stretched in urban schools, they are more available and common; a special needs infrastructure is in place. In rural districts, kids often have to travel great distances for services, a burden that is especially prohibitive for poorer families.
Rural communities seldom have the range of supplemental services available outside of schools, such as occupational and physical therapy or services for children on the autism spectrum. Additionally the pay differential for teachers discourages many from heading to rural areas.
Notably, students with IEP’s are equally represented in urban and rural school districts; about 13 percent of students in both areas have IEP’s. If trends in ASD rates alone continue as they have, the percentage of children requiring specialized education will increase dramatically. The Center for Disease Control estimates that prevalence rates for ASD’s are between 1 in 500 to 1 in 166 children. The number of children classified as having an ASD in the special education system in 2003 was 6 times the level of children served under the same classification in 1994. Rates for urban and rural areas are similar.
Here on Planet Aspergers as we call it, we do the best that we can with our current allowance of human energy. The demands for our focus and energy are many. They include: What causes autism and why have the rates increased so dramatically? Is it a disease and is there a “cure?”(This piece alone can drown you in information about exposure to mercury in vaccines or the environment and the huge range of suggested therapies.) What type of education is best, public or private? What can we afford? The biggest, ugliest competitor for energy, however, is the assignment of guilt. Whose fault is this? What did I do wrong?Like Ma, I have decided not to concern myself with assignment of guilt or the reasons that Rosa has a disability or even the politics of IDEA and FAPE as related to public schools. I simply don’t have the energy. I focus on finding her the best tools possible for living life. Fortunately, the state of Ohio has the Autism Scholarship Program that allows us to choose services from a list of state approved providers in place of sending her to public school. I believe that public schools should be inclusive environments. However, when offered the opportunity of placing her among folks who specialize in educating high functioning special needs kids and a teacher to student ratio of 1:5, we jumped at it. Rosa attends Linden Grove School; a parent cooperative school here in Cincinnati that is a 30-minute drives from our home. Some students live in rural areas up to two counties away and travel over an hour to get to Linden Grove. As parents of special needs children, this is what we do. Unbound by the time eating reporting demands associated with public schools such as the No Child Left Behind Act, Linden Grove is able to focus on creating ways in which our kids can learn.
As I continue with life here on Planet Aspergers, however, I see that many of my problems are often of my own making stemming from my shame of having an ASD child and generally of somehow not being “right,” as a mom and a person. At my best, I go with the quirky, guileless flow of ASD and I am filled with wonder at my beautiful, creative, intelligent daughter. Wise beyond her years, she tells me when I express concerns about the abilities of a new teacher, “Mama, why don’t you give her a chance first?” I marvel at how lucky I am and I think of Ma and her unapologetic brave example of loving her child as he was and her belief that his being different never meant he was less.