Tennessee Kindred Stories of Disability

A collection of stories from individuals with disabilities, families, friends, and disability service providers in Tennessee



Margo (27), Katherine Ann (25), developmentally delayed, Shelby County


"I am not a planner but my sister and my niece wish that I was since they might be guardians one day. I must plan for the future care of my daughters. This is very hard for me. "

  • A Parent's Perspective
  • Posted on 9/20/2012

 

I have two daughters, Margo is 27 and Katherine Ann is 25.  They were born in Atlanta and had seizures after birth. The doctors can’t say for sure that is what caused their disability. They were diagnosed as developmentally delayed.  

When the youngest was one and half years old we moved back to Memphis. I had friends who were very supportive in Atlanta, but I needed family. Family gives a lot more support and love.  My mother and father were both a big help with the girls. My mother is still living in her own home.  She is not physically able to get around like she used to but her mind is still sharp. We go over there every night and cook dinner. The girls help her and she helps them. They both know how to record her blood pressure so my mother says that they are better at care giving than the caregivers are.

My daughters are very different from one another and I try meeting their needs on an individual basis.  When they were growing up you want them to walk and talk just like any other child and they didn’t.  When they are little you don’t think about it, but the older they get you see the differences. Sometimes my fears kept them from being as independent as they could have been.  The main thing is to treat them like you would anybody else and not see their disability, but sometimes it’s hard and sometimes it’s easier to just do it yourself.  You have to pick your battles.

My daughters live at home with me.  They attend a recreational center three half days a week. They just started about two years ago. That was a challenge, finding some place for them to go during the day. You just don’t want any child to sit at home and not do anything. For the longest time Memphis didn’t really have much to offer for people with disabilities. Once a person reaches the age of 21, there are limited services. Jobs are limited. In my case, The Dept. of Vocational Rehabilitation is not much help in locating jobs for the disabled.  Besides the recreational center, they attend church, bible study, other church and community center activities such as dances, summer camps and Special Olympics bowling. They especially love to play basketball. That’s the biggest challenge, trying to keep them active with age appropriate activities.  

You want them to be around their peers. I know with Margo and Katherine Ann at the program they attend some of the workers are their age. Katherine Ann used to have a speech therapist in school but she has learned more from being around her peers. It is because these young adults are talking and interacting with them like regular young adults. They learn so much just being with people their age.

One time a lady told me my daughters have two strikes against them. I said what do you mean?  She said both your children have a disability. In most families, one child has a disability and the other child is healthy.  Margo and Katherine Ann have no one to emulate.

When they were young, I knew that they were getting the education, support and love that they needed.   You think that you have years to plan for their future.  It goes by fast and then you are like “OH NO – what do I do?”

For 16 years, they attended a private special education school which expected the highest and expected the best. Early intervention helped them more than anything.  After the age of 16, they attended a public school which was more like a babysitting service. They were in a self-contained class. I was never informed of other services within the school system which could have prepared them for the work place. They stayed in school until the age of 22.  This is when I started to stress out due to lack of services within the state of Tennessee.  I am not a planner but my sister and my niece wish that I was since they might be their guardian one day.  I must plan for the future care of my daughters.  This is very hard for me.

Margo has a boyfriend, Matt, who lives in a group home. They have been dating 7-8 years. His mother and her family have always included Margo in many of their activities and vacations as our family does with Matt.  Wherever Margo goes Katherine Ann will go.  I want their guardians to be open to them living as independently as they can. I think that’s what any parent wants for any child.

A lot of good laws have passed such as the program called family support program, which helps pay tuition and/or medical expenses. There is, also, SSI available or the waiver to help defer expenses for people with disabilities. These services have helped me keep my daughters in their activities. I think society is more aware of people with disabilities and the importance of keeping them in the community.

I learn from them every day. Katherine Ann will wake up and say, “Oh, it’s a beautiful day!” I will say, “Katherine Ann, it’s raining and storming out it’s not a beautiful day.” Every morning she would get up and say that and I started thinking about it and I went back to her and said, “You know, you are right. It doesn’t matter what it is doing outside. It is a beautiful day.”

 

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