Braille Monitor                                              May 2014

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Marley and Me Musical Chairs

by Terry Rupp

From the Editor: Terry Rupp is the former president of the National Federation of the Blind of Nevada and the mother of a blind child. This article is taken from her blog, where she shares her experiences as a blind parent with the world. Here is what she says:

Terry Rupp with her daughter, MarleyI feel as if 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.

About two-and-a-half years ago we brought my daughter in to see the pediatrician for a double ear infection. This 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 n , amblyopia (lazy eye), and a head tilt in response to the other two symptoms. We were told that this was common in eye development in toddlers and it should correct itself by school age.

Over the next two years it looked as if the condition was getting better, only obvious 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 she was having difficulty seeing the letters in her books while we were working on reading and writing. My husband noticed she was having 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 directly for that object but feeling for it.

I couldn’t believe I had let two years go by since her last eye checkup. When I called to make an appointment 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 she would qualify to get into its preschool program because, if she would be needing services, I wanted to start the process sooner than later.

After a series of assessments with the school nurse and the psychologist and the administration of a vision and hearing test, we sat down to our first IEP (Individualized Education Plan) The team determined that my daughter qualifies to start preschool because she will be a blind/low vision student. Keep in mind that we hadn’t yet seen the new eye doctor.

There was a good deal of discussion about what accommodations and services she would be given, and, as I expected, there was significant disagreement about Braille. The low vision specialist claimed she felt my daughter has too much vision to learn Braille and that it would slow her down and confuse her. Knowing the IEP process, and knowing that I was able to appeal the findings of the team if I felt the need, I simply told them that, if they didn’t want to teach her 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 already be fully reading uncontracted Braille and will be far ahead of her peers.

A few days later we visited her new eye doctor. It turns out that she doesn’t just have the three symptoms that make up spasmus nutans. She’s got optic atrophy just like her mama. It’s very possible it was a dormant gene that appeared in me and which I passed to her. It could be that waiting two years without treating the amblyopia caused the atrophy in the eye. On the other hand it could be a coincidence. What matters, however, is that she’s got the same eye condition as me. 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, possibly making things worse.

I’ll be honest. The weekend following these findings consisted of a whole lot of tears, a whole lot of guilt, a whole lot of grief, and a whole lot of anger. But it also witnessed a whole lot of love, support, and 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 one, three, four, six.” I then 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 was 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 experiences, 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 her 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 and make sure that she grows up to be a confident young lady doing whatever she wants to in life.

So, to my dear, sweet Marley, this musical is for you because you’re amazing just the way you are.

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