Parents making tough decisions...

By columnist:   Deja Powell
For any parent who has a child with a disability, you know how difficult it is to make decisions on behalf of that child. There are a million decisions to make when it comes to your child’s education, decisions that you know will impact the rest of their life. Now I must preface this by saying that I am not a parent myself, but don’t stop reading, I will speak from the perspective of my parents.

Like nearly all parents, my mom and dad wanted nothing but the best for me. At 9 -months-old they learned that I would be blind for the rest of my life. I’m sure my parents instantly felt the burden of parenthood grow even larger. When it was time for me to go to school, my parents had to decide which school was best for me.

With guidance from experts such as eye doctors and other professionals in the field of blindness they decided to enroll me at the Utah School for the Deaf and Blind for my pre-K schooling. This was not an easy decision for my parents.

To make a long story short, after a year at the school for the blind, my parents made a decision to then enroll me in public school. Once in public school my parents began the IEP process, IEP stands for Individual Education Plan, for any parent who has a child with a disability, you know all too well about IEP’s.

In this process my parents had to make tough decisions about my education. Would my child use large print or learn Braille? Would my child use a cane, or not? Would she participate in physical education class? The questions were endless and I’m sure quite confusing. The major decisions were made for my parents, because, well, they didn’t know what to do with a blind child and professionals in the field probably knew best. So I didn’t learn Braille and I didn’t use a cane and I didn’t participate in physical education classes. Later, my parents learned that these decisions were the wrong ones.

So where does the problem lie, the “qualified” professionals who work with the blind seemed to be the experts and seemed to know what was best; and honestly they probably thought what they were doing was best. My parents on the other hand knew nothing about blindness or being parents of a blind child until they were suddenly side-swiped with that reality.

My mom often talks to me about how she wishes she would have made different decisions for me when I was younger. She still feels a strong sense of guilt. But my mom did what she thought was best, what she thought was normal for a child like hers. She had no other parents to turn to, no group of people that she knew who knew anything about blindness, no books to read on the subject. She did the best she could.

We now know that there are plenty of consumer organizations of blind people that help parents like mine. Organizations like the National Federation of the Blind’s National Organization of Parents of Blind Children and others.

Whenever I ask my parents what they know now that they wish they would have known before they most often say they wish they would have got to meet more blind people, blind adults who have grown up to be successful and had the chance to ask them questions about their education. They wish they could have met other parents of blind children so they didn’t feel like they were the only ones out there. They wish they would have listened less to the experts and more to actual blind people who have been there and done that.

For any parent of a child with a disability, I’m sure this all sounds too familiar. As a professional in the blindness field myself, I say to not only talk to the experts in the field but talk to other parents who are dealing with what you are, bounce ideas off of them and learn from their personal experiences. Parents are the absolute key to a child’s success. While that’s a big burden to hold for you parents, it’s also a pretty great gift you can give your child.

But remember that you are not alone and there are other parents, as well as adults with disabilities, who are ready, willing and able to help you.


Deja M. Powell is programs manager at the Professional Development and Research Institute on Blindness at Louisiana Tech University and a 2008 alumna of the Louisiana Center for the Blind in Ruston. She writes a monthly column for the Daily Leader that runs on the second Thursday.


Anonymous said...

This is very interesting, You're a very skilled blogger. I've joined your feed and look forward to seeking more of your magnificent post. Also, I've shared your website in my social networks!

Daisy said...

Excellent post. My son's placements have been complicated. He was educated mainly in local public schools with short term enrollments at the school for the blind. After his HS graduation, he completed a 5th year program at the blind school emphasizing daily living skills and employment skills. He's entering adulthood now; what's next?