My Mom is my hero. She has been, is, and always will be our champion.
She and my Dad taught me everything I know about advocacy. After Jessica’s a/v shunt surgery, Mom and many others in our family went on an immediate search for resources. When first reflecting on that statement, I imagine that the newer generation might not understand the challenge that was at the time. The commercialization of the internet did not really happen until the 1990’s. So, we had to rely on making phone calls, asking for help finding resources.
One of our frustrations was that no one had a compilation of help and what services were available (this led Mom to choose Human Services Management as a major later on when she went back to college at UTC). The day the pediatrician told us the diagnosis, one of Mom’s first questions was, how will we educate her? Our pediatrician advised us to go to our local county to see what services they might have for a blind baby because she just didn’t know. In terms of sensory disabilities, blindness in babies was relatively uncommon. Let me share some statistics to show what we were up against in our search for services. I am referencing older statistics to show a snapshot of back then.
Based on data from the 1996 National Health Interview Survey, less than 1% (0.6%) of persons under the age of 18 were visually impaired, defined as blindness in one or both eyes, or any other trouble seeing even when wearing glasses (Adams, Hendershot, & Marano, 1999). The long-term outlook for employment was very discouraging. Data From the Survey of Income and Program Participation showed that Nationally, among persons age 21 to 64 who had a visual impairment, only 41.5% were employed; among individuals unable to see words and letters, this figure decreased to 29.9%. ¹ Based on these numbers, it is very obvious why education should be a concern and was going to be so important for success.
Searching For Resources
The next step in our advocacy was call to our county government. They referred us to the Department of Family and Children’s Services. We went and waited a long time for our turn to be seen. When we finally got to see someone, we explained about Jessica and said we were there looking for resources. The person we were talking to commenced to ask a series of questions. Then, finally announced that I wasn’t eligible for what was referred to back then as Welfare.
Hold On A Minute … that’s not why we were there.
Our appointment wasn’t for that. We were looking for resources. Like, as in, what can we do to help our blind baby? What can we do to increase her chances of success in this world? What DO we do at all to help a blind baby? Where do we start?
A Condescending Attitude
What if we had come for financial help? She had told us that I wouldn’t be eligible because I had a car. That same car that drove me to my minimum wage job and to the hospital and doctors office for appointments. If I got rid of my car so that I couldn’t work, then I would qualify for Welfare. How stupid. The woman’s attitude was really condescending. There was not an iota of sympathy or any effort to even suggest programs. Mom was infuriated by the whole exchange and really let the woman know. We left without any guidance or help for Jessica at all.
The Introduction of Early Intervention
My mom’s twin sister was also on the advocacy train. She was researching and stumbled upon the agency GA PINES. Truly a Godsend, GA PINES changed all of our lives. They provide early intervention services with an emphasis on training families of newly diagnosed children birth to five years of age with vision and/or loss of hearing. We had some wonderful parent advisors that worked with us, in our home, for several years. They taught us so much, first and foremost, Early Intervention. That was the first time that concept was introduced into our lives. One of the first things I remember being told was to talk to her all the time. Tell her everything. Describe everything. Talk to her all the time. So, that we did. All the time. (And now, she is reciprocating – all the time 🙂 )
It was explained to us that blind babies are not motivated to crawl because they don’t see anything to go to. So we were taught how to motivate her to crawl. Another thing we were taught was how to stimulate her vision. It was important to encourage her to try to use the vision she did have so that she didn’t lose it and by encouraging her to use her vision, it would also foster continued development of the visual nervous system, potentially increasing some of her visual abilities. ²
Our Advocacy and Early Intervention Efforts Were Paying Off
We diligently worked with Jess every day, all day long. We saw her visually noticing a few more things. One day, we went to the clinic for a follow-up with the Neurosurgeon.
Jess was sitting on up on the exam table with my assistance. Imagine the doctor’s astonishment when Jessica reached up and took hold of the coiled cord of the otoscope. He was amazed and so impressed with her. We went for a follow-up CT to check the status of the shunt.
What we saw was shocking…