My grandmother died Saturday night, and although you might not know her name (it was Lillian), if you’re a special needs parent, you owe her your thanks.
When my Aunt Patty was born in 1952 she was a strong eight pound baby, but when the soft spot on her head closed too quickly, she started to fall behind developmentally. Around nine months, my grandparents sought out the help of a doctor and my grandma wrote that he “…insisted we accept the inevitable. Your child is Mentally Retarded and there is nothing we or you can do but accept it. She is your cross to bear. Love her for what she is. Help her when she needs help, but don’t keep her at a standstill. Help her to improve herself, but at her own speed.” She wrote that later that evening “…my tears came streaming down. The jolt had come. Why did this happen?” and it feels so familiar. Those same emotions, thoughts, questions. It is a hurt that bonds all of us with children with special needs.
But they did not give up. She wrote that my grandpa “…converted a stilted walker to make it easier for her to get around. We felt the exercise would help her walk and perhaps stimulate interest in things around her.” There were no therapies, no early intervention, no pediatric medical equipment readily accessible and yet they forged on. They were determined to give my aunt the best they could.
My grandma didn’t know it back then, but she was changing the world.
When my aunt was about two and a half, they took her to a specialist to have her spine examined and his heartbreaking words stayed with my grandma for a long time: “Of all the doctors, I still feel he was one of the cruelest. ‘Your child is mentally retarded and should be placed in a home away from the rest of your children. This type will never make the world go around so why not devote your interest to your well children at home? They deserve it.’ How could he know how our hearts ached?” It was still quite common for disabled children to be put in institutions. It’s still common practice in many many countries today. They continued to seek out any and all help for Patty, though. “All articles, books, and medical directors tell you there is nothing to be done for a child such as yours. Your child’s body need not be neglected because her mind can’t tell you what her body needs.”
My grandparents worked tirelessly to provide opportunities for their daughter. Eventually my grandma started up a preschool for Patty to attend along with some other children in the community. They all chipped in and hired a retired teacher, meeting first in a church and then in an old condemned school. They invited the local superintendents to visit and see firsthand how desperately a program was needed for their children, but, as my grandma put it, “It all fell on deaf ears and they said they would budget to help us, but that never happened.”
When Patty was seven, my grandma approached the local school about a program for her. She was told that the only way they would know she even existed is if she were registered. So my grandma, along with the other parents in their group, “marched into the school office and enrolled the children.” The school was so shocked they went ahead with registering them, but the first day of school, the principal locked the doors, barring the children from entering. The community rose up against them as well and showed up in the hundreds at a town meeting demanding that those children not be allowed to attend the school with their children. Can you imagine???? I’m so disgusted just thinking of this, but how many of us have faced these attitudes in subtler ways? The disgusted look in the grocery store, the party invitations that only your child doesn’t receive, the dreaded IEPs (Individualized Education Plans) that sometimes leave your child’s needs unattended, and more and more.
But those parents had no Facebook to seek out other families, no laws to force schools to make the necessary accommodations, no campaigns to educate the world about their children. They were on their own, but they kept fighting for their children.
Eventually, my grandparents and others from the community created a program separate from the school for both children and adults with special needs. That program is still going strong today for the adults of the community.
My grandma and other parents in that generation took a stand, declaring that their sons and daughters had VALUE. They deserved to be treated with respect and dignity. They deserved opportunities and education. They should not be hidden away in institutions to live their lives without a family or love.
It was parents like my grandma and grandpa that made a better world for MY daughter. They pushed along a revolution that led to more and more parents keeping their children home. And once those children were home, parents worked to give their children the BEST the world had to offer: education, therapies, medical advancements, acceptance, and LOVE.
So thank you to all the parents that kept your children home instead of placing them in an institution.
Thank you to all the parents that pushed schools to offer an education to all children.
Thank you to all the parents that lobbied for laws to protect those with disabilities.
Thank you to all the parents that are now working to create university programs for ALL young adults.
Thank you to all the parents that stood firm and fought back.
Thank you to all the parents that have educated the world on how amazing our kids are, regardless of their disabilities.
And thank you, Grandma. Thank you for taking a stand. Thank you for loving your daughter and changing the world for mine.