Editor’s Note: Some great conversation threads appear on the <>; listserver sponsored by the National Organization of Parents of Blind Children. Occasionally, parts of those conversations have enough substance, detail, and insight to stand-alone. Such is the case with the remarks below by Colorado mother, Rene Harrell. Here is Harrell as she describes her struggles to untangle the threads of cause-and-effect for her child who has multiple disabilities:
From: Rene Harrell
To: NFBnet Blind Kid Mailing List, (for parents of blind children) <>;
Sent: Thursday, June 14, 2007
Subject: Re: What do you REALLY believe about blindness?
This is a great conversation. I’m so glad to see this on here, because I’ve actually been thinking about this a lot lately.
Our daughter has multiple disabilities, which had made untangling the threads of “why” she can’t do certain things hard for us as her parents. Why wasn’t she verbally on par with her peers? Why the certain persevering play behaviors? Why was she lagging in certain motor skills?
She is adopted and came home to us at the age of four, so we also had the transition from her foster home to a whole new country and new language to throw into the mix.
I haven’t had the chance to attend any NFB events, though I would dearly love to make it to a national convention. As of yet, we’ve never had the opportunity to meet any other children who are blind. I’ve struggled to figure out what is a blindness issue, what is a mental retardation issue, what is an autism issue, and what is just unique to Clare. But this list has been a wonderful resource, and two beliefs have really anchored me in this journey: 1. Blind children should have the capacity to achieve on par with their peers. In Clare’s case, this means that she has the capacity to achieve on par with children who share her other disabilities but are sighted; and 2. Our job as her parents is to encourage and foster every milestone of independence that she has the capacity to achieve.
Truly believing these two things has been a transformative process for me. I can’t say I always believed them in my core. I’d dress her and change her and put on her shoes and always have her hold my hand; and we never made any steps towards anything more. And then, when we really started to believe in these two core principles, we began to expect more out of Clare. Since her developmental and cognitive age hovers around age two, I took a good hard look at my two-year-old son and started taking stock--and started to push.
Clare will be six in September and is only now beginning to talk. She has a vocabulary of about fifty words. But with a little assistance, she is now dressing and undressing herself. She is not potty trained but she can take off her diaper, put on a new one, and then wash her hands with just a little prompting (obviously these are the “clean” diaper changes). She can brush her teeth and her hair. She can feed herself with a spoon and a fork. She can navigate our house. Now, when we go to the playground, I take her on a tour to show her where all the equipment is and then push her to do it herself.
She initially fought every single one of these pushes. (Whew! We had some major meltdowns of disappointment and frustration.) But then we got the wonderful chance to stand back, watch her blossom, and see the pride she has in herself when she finds she can achieve. Each time she’s risen to reach a new expectation, it’s shown us that we will never know her true capacity unless we are stretching her to grow. And we gain more and more confidence to challenge her when we see the positive results that come from encouraging her to figure out how she can do things for herself instead of needing things done for her.
She rides a tricycle now, and she is playing T-ball in the three-year-old league with her brother at the local YMCA, as it is her cognitive age. (We didn’t tell them she was blind.) We’ve shown her where the T is, how to figure out where the ball is on the T, and how to swing the bat. The only help we give her is to have someone at the bases shouting so she knows where to run, and they have to do that for all the kids anyway. She’s in gymnastics with peers her own age (either her dad or I stay with her to help her follow directions).
Each time a new task comes up, I ask myself: how much of this can she do on her own? We are now working on different fasteners, such as buttons, zippers, laces, etc. She can’t zipper entirely on her own, but if I get it started, she can pull it up the whole way. She can’t buckle herself in her car seat, but if I thread the top fastener together and tell her to “push, then she can click it in on her own.
I’m probably rambling incoherently right now, but this listserver has really challenged me to reframe how I think about blindness in light of my daughter’s other disabilities. I always thought I had a positive attitude about what blind people could achieve, until I was confronted with a child who seemed so incapable of doing absolutely anything. And “blame it on blindness” syndrome runs so rampant that it was hard not to get sucked into believing that everything she couldn’t do was because she was blind. We had one doctor, God bless her, who finally looked me in the eye and said flat out, “There is nothing about blindness that would prevent your daughter from talking and don’t believe anyone who says that.” This really kick-started us to begin forcefully advocating against those who want to blame blindness for our daughter’s other challenges in life. And since then, her quality of life has dramatically increased.
So THANK YOU all on this listserver, because you’ve been such an encouragement!