Future Reflections Fall 2007
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by Laura Weber
Editorís Note: Laura Weber is the president of the Texas Parents of Blind Children (TPoBC), a division of the NFB of Texas and one of the newest affiliates of the National Organization of Parents of Blind Children (NOPBC). Texas will be the host of the 2008 NFB Convention, and Laura and our Texas parents will be on hand to help make it the best convention ever for families of blind children. For more information about the TPoBC, contact Laura Weber by phone at (832) 971-7571 or by e-mail at <[email protected]>. Here is what Laura has to say about her experiences as the mom of a blind daughter, and what she has gained from her membership in the NOPBC:
When we took our daughter to her two-month checkup, I mentioned to her pediatrician that her eyes seemed to jerk and that she wasnít visually tracking things yet. She wasnít on track with the developmental checklists and, although I wasnít too worried, something didnít seem right.
Our doctor told us that the involuntary eye movement was known as nystagmus, and he got us an appointment with a pediatric ophthalmologist that very same day. I guess I should have realized that something was up for us to get an appointment so soon, but I still wasnít overly worried. The ophthalmologist confirmed the nystagmus and after examining her, told us that Lindsay was extremely farsighted. She rapidly ran down a laundry list of conditions that might be causing the nystagmus, and told us to come back when Lindsay was six months old. We left the office feeling confused and frustrated, but we thought that being farsighted wasnít that bad. She would just have to wear glasses, right? Wrong.
We got a copy of the ophthalmologistís records and showed it to a friend of ours who is an optometrist. Jotted to the side of the exam notes were the words ďpossible Leberís Congenital Amaurosis.Ē Huh? The doctor never mentioned that in the exam. We started researching on the Internet, and what we found was very frightening.
Unable to wait another four months, we made an appointment with another pediatric ophthalmologist for a second opinion. He told us that he agreed with the diagnosis that had been jotted in her chart, and said that we should probably start looking into things like Braille. But, like the first ophthalmologist, he never used the word blind. Then he ushered us to the front desk to pay our bill, and sent us on our way. That was it. That was how we found out that our beautiful, healthy, and perfect baby was blind. And, apparently, thatís where the doctors felt their obligations ended. We were never referred to early childhood intervention services. We were never referred to a parent support group. We were never given books, brochures, or a list of references. We were just sent home.
We were devastated. We were lost. We felt like all the dreams we had for our daughterís future were crushed. And everyone around us contributed to that thinking. Some friends sent us flowers. A neighbor from down the street whom we had never even met, heard about Lindsay through the grapevine and brought us a daily meditation sympathy calendar. People offered to cook for us. Everyone said how sorry he or she was. Now please donít think that I didnít appreciate their attempts at being supportive but, in retrospect, they treated us exactly like a family whose child has died. And thatís how we felt.
I started searching the Internet for support groups and information, and I became more depressed. I read articles about blindness that reported the low employment rate and high illiteracy rate among blind adults. I met other parents of blind children, and the message I got from them was how hard things were going to be. They talked about IEPs and ARDs and CTVIs and COMS--and lots of other acronyms that flew right over my head. They told me that I would be in a constant battle with the school system and with insurance companies to get Lindsay the services she needed. They told me my daughter would be discriminated against, and Iíd need to become an expert on the law and on advocacy. Where was the good news? Who could tell me what to do? Who could tell me that it would be okay?
Then I got in touch with the National Federation of the Blind (NFB). I requested information from their parent division, the National Organization of Parents of Blind Children (NOPBC). I canít explain what it meant to me to hear--for the first time--positive things about blindness and about what Lindsay could accomplish. I read information packets and Kernel Books and presidential addresses, and all of it hammered away at the same message: blindness is respectable. The mantra I kept repeating to myself over and over was this:
The real problem of blindness is not the loss of eyesight. The real problem is the misunderstanding and lack of information that exist. If a blind person has proper training and opportunity, blindness can be reduced to a physical nuisance.
When I first contacted NOPBC, they did not have a parents chapter in Texas. So, I got involved in another local parent support group. It was a great place to meet other parents and to find resources, but something was missing. I wanted to be part of a group that promoted a positive message about blindness, and I wanted to meet blind adults who could help me teach those beliefs to my daughter. A group of parents, teachers, or therapists can sit around all day talking about how to teach my daughter blindness skills, but only a blind person has experienced being blind. Iíve met wonderful, caring, and intelligent professionals in the blindness field, and Iíve learned a lot from them but, unless theyíre blind, they are speaking as observers. For many of the things that my daughter needs to learn, thatís fine, but when she wants to talk to someone who truly knows what she faces and how she feels, I believe that only another blind person can fill that need. The analogy I like to use is this: a man can be a brilliant, talented, and caring obstetrician. He can have the knowledge and skills to deliver babies. He can have a wonderful bedside manner. He cannot, however, tell you what it feels like to give birth. For that, you should talk to another mother.
In my opinion, the major difference between NOPBC and other
parent groups is that the NOPBC is part of the NFB, and the NFBís philosophy
is what I want my daughter to learn and live. I want her to have a positive
attitude, self-determination, and high expectations; and I want her to have
competent, successful blind role models. NOPBC helps me stay focused on my goal
to raise my daughter to be a happy, healthy, independent, and successful adult
with good life skills, social skills, academic skills, and career skills. In
short, I want for my child what all parents want for their children. My desires
and expectations arenít different or lower because sheís blind.
Last fall I had the privilege of attending the NFB of Texas state convention in Houston, and at that time, a state chapter of NOPBC was formed. Texas Parents of Blind Children (TPoBC) came to life, and I was elected president. My goal is to pass on the message of the NFB to parents of blind children all over Texas.
My daughter turned five years old this summer. Sheís slowly
but surely learning to use a cane and to read Braille. Sheís smart and beautiful
and is, without a doubt, the happiest kid Iíve ever met. I feel good to be raising
her in the NFB. I want her to have the opportunity to have a Braille pen pal,
participate in Braille reading contests, and have a blind mentor. The NFB has
all those programs. I also want her to meet successful blind adults, and to
be able to go to them with questions and frustrations. I will never be able
to completely understand what life is like for her; besides, what child wants
to go to her mom all the time? I want Lindsay to go to camp, have summer jobs,
get life skills training, go to college, and have a career and family. The NFB
promotes all those things. Together weíll teach her that itís respectable to
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