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Summer 2000 Table of Contents
Versión Español de este artículo (Spanish Version)

By Paige Parrish, Parent, Tyler, TX 

Editor's note: There are laws, statutes, and memorandums of understandings between agencies that are written to insure that families of children with disabilities get the services they need in a timely fashion. Unfortunately they can be pretty meaningless if the public is unaware of them. Typically the public only becomes aware when an issue touches their lives in a personal way. Most of the people in Texas will not experience the impact of a visual impairment on their child's lives. Since most of you reading this newsletter have been touched with the issues of blindness it is up to you to help keep the public aware. As the parents who gathered for the Parent Summit in Austin learned through their discussions, there is definitely a role for parents to play in helping the general public learn about blindness and visual impairments and the resources that are available in Texas.

An extraordinary event occurred on April 9th at the Texas School for the Blind and Visually Impaired in Austin, Texas. Experts from around the state convened to discuss issues that affect our children. There were no chiefs of state or heads of government agencies attending this event, just the heads of households. Parents of children with visual impairments from around Texas were convened to give our valuable opinion about how to make a better future for our children. Under the guidance of a facilitator, we grouped geographically to identify existing services in our area. We brainstormed together to identify our needs and the needs of our children. The general consensus was that chief among all the needs we had was getting information about services and resources earlier in the life of our child. The stories we shared about our experiences with the initial diagnosis and the early experiences that followed were all too familiar. One phrase that continued to pop up like a jack-in-the-box was "first point of entry."

I am the parent of a seven-year-old visually impaired child named Alexandria. My "first point of entry" was at the office of my daughter's pediatrician. After noticing some irregular eye movements during a checkup he referred us that same day to a neurologist at a children's hospital. I couldn't believe it when they told me they suspected that my two-month-old baby had a tumor on her optic nerve. After conducting more tests, they determined that this was not the case and sent me to a pediatric neuro-ophthalmologist. There it was decided that Alex did have a severe visual impairment. Her bizarre eye movements, they felt, were indicative of a 9 childhood cancer called neuroblastoma. This is the diagnosis we lived with for about a year.

Needless to say, the vision issue definitely took a back seat to cancer. Our family was emotionally devastated. Not once did any of the medical professionals say, "Hey, this is a really difficult time for you. Let me hook you up with the right people to make it a little easier." Financially this was also quite a burden on our family since my husband was a medical student. The stress and strain on our marriage, I don't think I even have to mention. Here we were a part of the medical community, but no physician referred us to someone who could give us direction and support! My husband and I are fairly intelligent people, but we did not know what to do.

I was in denial, and my husband naturally focused on the medical aspects of our daughter's condition. Had we been referred to a social worker, I think we would have been given some guidance about what to do. Things like applying for SSI benefits or getting services from Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) probably would have made our lives a lot different. (Editor's note: The Disability Determination Unit of the Social Security Administration forwards all applications with the diagnosis of blindness to the Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) for rehabilitation services.)

The good news was the cancer did not thrive, but the bad news was the visual diagnosis looked grim. The doctor called it Leber's Congenital Amaurosis and told us in a cold, clinical tone, "Your daughter's condition will end in total blindness, so you should prepare her for a school for the blind." The doctor did not seem to consider my frame of mind. My reaction was, "My daughter is blind and now you want me to send her away!"

I continued to have a healthy dose of denial and did not ask any questions. I did not know that all babies with a hearing or vision loss could receive early intervention services in their home. I did not know there are federal and state regulations requiring all professionals to refer children, birth-three, with a developmental delay to Early Childhood Intervention (ECI). Based on all the similar stories that were shared at the Summit, apparently other parents and professionals didn't know this either. As a parent I want to know if it is possible to tell physicians that referrals are not just a vague, ethical obligation? I feel they need to be held more accountable for helping parents and others connect to these other support resources. As an enlightened parent I can do my part by sharing my knowledge and experiences within the medical community. I can let them know that I am available to offer other parents support and information when they face similar concerns.

At some point I finally called the Texas School for the Blind & Visually Impaired and was given support, referrals and a world of information. After ECI evaluated Alex, the lack of early intervention in my daughter's life was evident. She displayed poor overall muscle tone, especially in the hip flexor area. This occurred because her vision loss reduced her motivation to move and also made her fearful of movement. She was very passive and quite content to sit in one spot and play with one toy. ECI referred me to my local school district to receive vision and orientation and mobility services.

As parents talked throughout the day-long Summit, a number of things became clear to me. I'd like to share these insights with you other parents who may be reading this article. First, investigate what resources are available to you and your child. Make sure you know the laws that can impact your child and your family. Learn about the appropriate channels for initiating change. Find out your legislative representatives' names and how to contact them. Remember that one parent can make a difference.

By attending workshops and conferences I am learning about the needs of my child. My daughter is out there advocating for herself at the age of seven! I hope that I have been a good example for her through my efforts to make a difference in the lives of visually impaired and blind individuals.

I look toward the future with much optimism realizing there is a lot of work to be done. I hope I can encourage you to become knowledgeable about the issues surrounding the education of your child. I am grateful for the opportunities I have had to educate myself. I feel that I have fulfilled a vision that Phil Hatlen has of parents of walking into an ARD meeting as equally informed as the educators about the educational needs of their child with visual impairments.

At the Summit the camaraderie between the parents was impressive. A sort of kinship was formed with the sharing of experiences and information. The incidental tips I got from parents that were farther down the road will come in handy. We discussed the benefits of forming parent support groups. I know this is not always feasible with the busy lives we lead, but at least extend yourself. Offer your name as a contact for other parents who may just be learning about their child's visual impairments. Let your TCB caseworker, social worker at your local hospital, your ophthalmologist, your pediatrician, and your vision teacher know that you are willing to visit with another parent or share information about services you have found in your area. It is my dream that one day all these professionals will work more collaboratively together to make the lives of our children meaningful and successful.