I am the mother of a very disabled child.
One of my best friends is also the mother of a child with a disabiliy. Both of our children are now grown men, age 38, and dependent on us, their mothers, for so much of their existence.
She and I often share our similar stories of what we continue to experience as mothers of an adult with a disability. She says we live in a different culture. I say we live in a different world.
Whatever you decide to call it, it is fair to say our existence is unique, hurtful, disappointing and often dissolusioning.It can also be described as strengthening, giving, loving and very rewarding.
Our young men are discriminated against on a regular basis. Society has not been educated to understand their differences and so people they have to deal with in society-teachers, doctors, even relatives lose patience with them and can say things that are mean, cruel and dismissive.
Even though they are adults, we have to depend on health services created by the govement to help them that other mothers never even know about.If we don’t have someone to help us care for our sons, then our social lives are limited, we can’t go on vacation and can”t go to work.We worry about having a respite caretaker, an in home health aide and a variety of community support services to help them navigate through a life that is so difficult for them.We lay our heads on a plllow evey night wondering what will happen to our sons if they outlive us.
Critics and well-doers often express to each of us, “you”ve done all you can for him. Put him somewhere so that you can enjoy your life.” When we hear this, my friend and I know that is not an option for us.We have given our sons a good life, and out of love and self sacrifice, we want our sons to have as much normailty as possibe ; and so we keep them in our homes or close by, so they can continue to be a part of a loving family.
Yes, we cannot have the hopes and dreams that other parents have for their offspring.Our sons will never live on their own without support. They will always be faced with discrimination and lack of understanding; they will be excluded from activities that others enjoy,; they will never marry and have a family so that my friend and I can enjoy grandchildren.Indeed, OUR LIVES ARE DIFFERENT!! Whether you view us as living in a different culture or a different world, we live exclusive of the experiences that are considered “normal ” and expected by most parents.But regardless of our reality, we love our young men; we would never trade them for anything; and we feel rewarded for having them in our lives.
State Representative Ruth Ann Gaines of Des Moines serves Iowa’s 32nd House District and is the Chair of the Legislative Black Caucus. Before being elected to the legislature, Rep. Gaines taught for 40 years at East High School, and has recently finished up her 50th year teaching at DMACC. She is the recipient of many awards, including: • 2020 Iowa Democratic Party’s We The People Award as a Member of Black Caucus • 2020 Progress Iowa’s Harkin Hero Award as a Member of Black Caucus