Marley and Me Musical Chairs

Marley and Me Musical Chairs

Future Reflections Special Issue on Low Vision PARENTS' PERSPECTIVES
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Marley and Me Musical Chairs
by Terri Rupp
From the Editor: Terri Rupp has served as president of the National Association of Blind Students (NABS) and won an NFB National Scholarship in 2007. She is a full-time mom in the suburbs of Las Vegas, Nevada. This article is based on an entry in her blog, which you can follow at <www.blindmomintheburbs.wordpress.com>.
I feel like I'm in a real-life game of musical chairs. First I was the blind child, then the blind student, then the blind parent, and now I'm sitting in the seat as the parent of a blind child.
This blog has been a draft in progress, and I'm finally ready to share it with you all. About two and a half years ago, we brought my daughter, Marley, in to see the pediatrician for a double ear infection. That was when it was first brought to our attention that she had nystagmus. After a few trips to the eye doctor, we were given the diagnosis of spasmus nutans. This is the combination of nystagmus, amblyopia (lazy eye), and a head tilt in response to the other two symptoms. We were told that this condition is common in the eye development of toddlers, and that it should correct itself by school age.
Over the next two years it looked as if Marley's eye condition was somewhat getting better, only showing when she was really tired or concentrating to see something at a distance. But as her fourth birthday came around, we noticed more and more signs that perhaps we were just looking for it to get better because the doctor said it would.
I noticed that Marley was having difficulty seeing the letters in her books while we worked on reading and writing. My husband noticed she had difficulty tracking things at a distance. Some of my close friends noticed that when she went to grab an object, it looked as if she wasn't reaching for it directly, but feeling for it instead.
I couldn't believe I let two years go by since her last eye checkup. When I called the ophthalmologist in January, the first available appointment wasn't until May. This wasn't acceptable, especially to a worried parent. After asking around, I found another ophthalmologist who came very highly recommended in my network of moms. I also decided to contact the school district to see if Marley would qualify to get into their preschool program. If she would be needing any services, I wanted to start the process sooner rather than later.
After a series of assessments with the school nurse and psychologist, plus a vision test and hearing test, we sat down to our first IEP (Individualized Education Program) meeting this past Tuesday. It was determined that my daughter qualifies to start preschool under the fact that she will be a blind/low vision student. (Keep in mind that we hadn't yet seen the new eye doctor.) There was much discussion about what accommodations and services she will be given. As I'd expected, there was much disagreement on the topic of Braille. The low vision specialist felt my daughter has too much vision to learn Braille, that it would slow her down and confuse her. I knew the IEP process, and I knew that I could amend our program if need be. I simply told them that if they didn't want to teach Marley Braille in preschool, that was fine with me. I am already teaching her Braille, and by the time the school district is ready to approve Braille instruction, she'll be reading uncontracted Braille and will be far ahead of her peers.
A few days later, on this past Friday, we visited Marley's new eye doctor. It turns out that she doesn't just have the three sypmtons that make up spasmus nutans. She's got optic nerve atrophy, just like her mama. It's very possible it was a dormant gene that appeared in me, and then I passed to her. It's also possible that, since we waited two years without treating the amblyopia, that condition caused the atrophy in the eye. It could be a fluke coincidence. All that matters is she's got the same eye condition I have. The doctor also told us that her vision loss is severe enough that Braille would be best for her. Forcing her to read print would only strain and stress her eyes, thus possibly making things worse.
I'll be honest. This weekend consisted of a whole lot of tears, a whole lot of guilt, a whole lot of grief, a whole lot of anger, but also a whole lot of inpouring of love and support. It also consisted of a whole lot of pride. On Sunday morning, I heard my daughter chatting away while she was eating her pancakes. My mommy ears perked up when I heard her say, "X is 1 3 4 6," referring to the dots that make up the Braille letter. I asked her to show it to me, which she did on the little wooden Braille block that we play with. She then told me that X is her favorite letter in Braille. I was overwhelmed by the comforting feeling that no matter what, everything will be fine. She is a happy, healthy, beautiful, bright, and strong little girl who will succeed in whatever her heart desires.
With my own personal experience, with the resources and support of the National Organization of Parents of Blind Children and the National Federation of the Blind, with the love of family and friends who will treat Marley like every other little girl out there and not like a child who needs to be tended to or coddled, I plan to surround her with nothing but positivity. I will make sure that she grows up to be a confident young lady doing whatever she wants to in life.

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