Saturday, February 9, 2008

Being Parents of Children with Disabilities...........

is NOT easy and we work much harder than parents of "normal" kids.

I have been thinking (again) because I am always a thinker. I think through my sleep. I just "think". Anyway, I am a parent of two disabled children. My daughter Kris was diagnosed bi-polar,somatic illness, and borderline personality disorder and had been in and out of the hospitals. For the longest time, we wanted her to go to Buckeye Ranch to get the best treatment but they kept sending her to other hospitals until one day, it was decided that she would go to Buckeye Ranch which was a wonderful place that help patients with severe emotional and mental health needs. This placement was the BEST decision because my daughter came out of the hospital understanding her disabilities and how to cope with her disabilities in this world. She is now a senior in high school and on a honor roll. She also have a part-time job working to save money. She even got accepted to attend a local college in Columbus which she will study next fall. She is now learning to live independently by learning how to manage money and how to take care of herself. My ex-wife didn't help very much with Krista so my wife who knew what to do with disabled kid since she has one of her own. My wife did the bulk of the work to get my daughter treated properly. With her help, we were able to get Krista help what she needed.

My step-daughter who is 26 years old has cerebral palsy and mental disability who still lives with us. She is currently working/attending at ARC. The Arc is the world’s largest community based organization of and for people with intellectual and developmental disabilities. It provides an array of services and support for families and individuals and includes over 140,000 members affiliated through more than 850 state and local chapters across the nation. The Arc is devoted to promoting and improving supports and services for all people with intellectual and developmental disabilities.

Its very tough for parents to find the "right" path for our disabled children and often we rely on the "experts" answers. My wife Carole and I are thankful that we have alot of experiences and knowledge in disabilities to know what and where to look for help. We don't organzations that are "narrow-minded" of treatments like AG Bell's agendas. We looked AT ALL aspects of what can HELP our daughters regardless how we think should be the right way. They are the ones who are living their lives and we are NOT living their lives. We are helping them living their lives and we want to enjoy life without us placing our own agendas what would be "best for them". We want the BEST for them to bring them out as who they are and how they can actually enjoy life independently however they can cope with. We cannot place restrictions on them because we "think" what is best for them.

Parents are likely to have a very good gage of their child's functional limitations and what the child is like as a person however, without proper education in understanding "fully" of the disability, parents of disabled children will not necessarily have the best interests of the child at heart any more than the average parent. Therefore, with that thinking, disabled children are particularly vulnerable to suffering at the hands of their parents who are willful in their own ignorance on agendas.

Last month, I talked about my mother who helped me become independent dispite of my disabilities. When she found out that I am deaf, she got me hearing aids and found places for me to get my education. My mother later admitted to me when I got older that she often "questioned" herself whether she was doing the "right thing" for me as a parent. I told her, "Mom, you were following your love and experts on how to get the best care for me and I love you for that. You are the greatest mom. It was a good decision for me to attend to a deaf oralism school because I am not really "that deaf" to learn sign language." After private speech therapies, she send me to a deaf school that practices oralism communication which was not an issue for me because I am not completely deaf. However, there were many students there who were completely deaf who were frustrated because they did not "advance" as I did simply because they were being trained more on lipreading and talking more than getting actual education about english, math, science and many other subjects. Which is why the government announced that oral deaf education has been a "dismal failure". If the deaf kids communicate according to their deafness, they would not be far behind in education. Over the years, I see them got angry at their parents and educators for not bringing them the best FOR THEM. Which is why you see some "deaf extremists" out there. They are just angry and speaking up as much as they can educating the public about deafness. There are many deaf bloggers who wrote so many negative thoughts about AG Bell.

My wife and I talked often to make sure we are doing right for our girls and the directions they are going and seeing how happy they are, I think we are going the right dirctions. Its not about how we think they should live, but rather how they need to live according to their abilities. They ARE ABLE according to their own abilities. Sometimes unorthodox is needed to get out of the traditional agendas and get the "right" care for each individual disabled child.

I love reading parent bloggers of disabled children. Most of my bloggers are parents whose children are autistic or deaf. There are others and I am still reading.


Casdok said...

Your right we are not living thier lives. All we can do is our best to help them be as able as they can. Sounds like you are doing a great job!

Candice said...

I think as parents, we all have that doubt in our minds if we are doing the best thing for our children. When you are a parent of a child with disabilities, it seems that doubt is amplified. I just hope like so many others out there that the choices that I make today are the best choices for my children.