Isolating

Being a parent of a child, or children, with a disability can be an isolating experience. Friends who used to invite you out for a movie or dinner no longer call. New friends are few and far between, and those people who do join your circle of acquaintances usually have a child with a disability also.

If you are a single parent of a child with a disability, dating is even more difficult. My personal experience has been that once a potential suitor meets my four children, three of whom have disabilities, they become busier at work and have no time to date, or they are unexpectedly called out of town, promising to call when they return. Those calls never come.

At first, you don’t notice the isolation, the infrequent calls, and the lost invitations. But once a parent’s life moves to a more predictable routine, the loss of friends can begin to ache like an overworked muscle. When this happens, some parents become even more involved, perhaps even obsessed, with their child’s disability. Those parents can turn into wonderful advocates who make significant differences for their child and other children with disabilities. But often in the process, they lose the essence of themselves.

I don’t mean to imply that the lives of parents of children with disabilities are bad. I feel my life is very rich and rewarding, and I am happy most of the time. I think we parents find ways to cope with the disappointments and lost social lives, but it doesn’t mean we wouldn’t like some changes.

I am first and foremost Ashley’s mom, Chip’s mom, Jessica’s mom, and Corey’s mom. But I do long to just be Deborah sometimes.

I would like for people to know more about me than just the ‘parent’ things. I would like for them to find it interesting that I used to be a police officer, that I am now a web designer and computer engineer, that I love to cook and garden, that one place I want to visit before I die is the Grand Canyon, that I love fresh flowers in the winter, and that blue is my favorite color.

I would like for someone to look in my eyes and see the intelligence and depth not just the exhaustion. I would like to argue politics and religion with someone who is brilliant and opinionated. I would like to take a class in furniture upholstery, and I would like to get dressed up and go out to dinner at a restaurant that doesn’t have ‘Family’ in its name.

My life, like the lives of most parents of children with disabilities, is dedicated to my children and helping them realize their hopes and dreams. I just want to make sure that I don’t stop hoping and dreaming myself.

Deborah can be found writing here at 5MFSN every Wednesday, and can also be found at Pipecleaner Dreams.

In addition to her job as a computer engineer and her single parent responsibilities, Deborah is president of a state-wide family support group for families whose lives are touched by deafblindness, and is a tireless advocate for all people with disabilities. She writes at Pipe Cleaner Dreams and her writing has also been featured in local magazines and newspapers. Ashley’s story has also been chronicled in a book by Jonathan Mooney titled Short Bus Stories.

Deborah

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