| 12/08/09 |
Labels Belong on Soup Cans |
Labels belong on soup cans, not our children…your child, my child, was labeled at the time of diagnosis. In Benjamin’s case, the labels were all over the board as medical people didn’t really know what his diagnoses were. So the first labels were things like, “dysmorphic features,” “legally blind,” “deaf.” All hard to hear. All part of the surreal horrific events of the first few months of his life…some diagnoses proved accurate, many didn’t. Sorting through the labels, determining what they mean, if they are important, has been part of the learning curve of my journey. Fortunately, the labels became less important as Benjamin evolved from a “term, small for gestational age infant with undiagnosed genetic abnormalities,” to Benjamin—to our child who wasn’t defined by labels but by the force of his personality and the love surrounding him. Just like every child.
But the labels will continue to follow Benjamin all his life as they will many Anchor children. So we need to shift our perspective. Consider labels your necessary “friend.” Look at them as your child’s “passport to services.” You’ve heard the cliché—“if you can’t beat them, join them?” Service systems love labels…or at least depend on them to categorize the provision of their services. Your child’s diagnosis of vision impairment, that label of “extreme myopia,” “ocular albinism,” “septic optic dysplasia,” the labels are many but the result is the same—your child qualifies for services from Anchor Center for Blind Children.
And yes, that label, “blind” is jarring and was difficult for me to become used to when Benjamin and I first started going to Anchor Center. After all…he can see lights…by now you know that Anchor serves children with a wide range of vision abilities. The term “blind,” is all encompassing and is how Anchor began 26 years ago…and your child’s vision diagnosis is his passport to Anchor services.
Just as other labels will lead to the provision of early intervention services, education services, healthcare waivers and adult living services (for some of us). It is very important to me that the term “deafblind” be marked on his Individual Education Plan (IEP) under disability. Because that is Benjamin’s avenue for learning. It gives the educators a focus and leads them towards resources that are appropriate. I don’t use that term when talking with families (visually/hearing impaired is “softer”) but deafblind has a stronger impact on educators and helps him qualify for certain services because of its strong connotations. And, obviously, we always need medical reports or evaluations to support the labels.
So yes, labels can hurt and fortunately, some of the more outdated and hurtful ones are beginning to disappear as our society becomes more accepting and understanding of differences. But the bottom line is, there are times when labels are useful. Use them to your child’s advantage. And know that labels do not define your child. Your child is much bigger than a simple word. It’s just a category used by the system. No one knows your child’s capabilities, his or her potential. Your child is defined by limitless possibility, endless love and a unique soul. Time will numb the impact of those labels and you will become a pro at using them as necessary and recognizing them for what they are—a passport to services. |
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