Abundant Life by Embry Burrus

Adults with Down Syndrome, Advocate, Aging, Auburn University, Family Challenges, Mother of an Adult with a Disability, Parents, People with Disabilities, Siblings 7 Comments »
Margaret, Embry and Mama at the Beach

Margaret, Embry and Mama at the Beach

Jane has graciously asked me to share with her readers how my family is caring for my older sister, Margaret, who has Down syndrome. It’s one of the most common questions that people ask me when I go to speak to parent groups and seminars: “What will happen to your sister when your mother dies?”

To be honest, it’s a fair question. My mother is 91 years old, so folks wonder, how could she possibly still take care of an adult child with Down syndrome? And the answer is, it’s now a group effort.

Our father died in 1983, and since then, our mother has been Margaret’s confidante,  caretaker, and as always, her lifelong advocate. Even when my father was alive, Mama was the one who took care of things; especially where Margaret was concerned. She continued to drive into her late eighties, and took care of all the household duties and bills. She drove Margaret to all of her social events, to the grocery store, to church, and even on short trips. People are always amazed when they meet her, marveling at how active, funny and engaging she is at 91 – she is truly an amazing person!

But, things have changed around their house now. Mama knew she needed to stop driving, especially at night, and the household chores were starting to overwhelm her. I called one night at around 8:30, and they were just sitting down to supper. When I asked Mama why they were eating so late, her response was, “I don’t know, I just couldn’t get it together.” I knew it was time to get her some help.

My brother and I talked, and decided that we needed to find someone who could help out on a daily basis with cooking, cleaning and driving Mama and Margaret to their activities and appointments. We were blessed to have a friend recommend someone, and now we have two wonderful ladies who share the duties. Brenda comes every morning, drives Margaret to her activities with the recreation department, and then comes back to the house where she cleans, fixes lunch, does laundry and takes Mama to the grocery store, the bank, or wherever she needs to go. Since Brenda already had a job in the evenings (taking care of another elderly person), we needed to find someone else who could work a few hours every night. Brenda knew of someone in her church that was retired and looking for a part-time job, so she recommended Marion, and she comes in Monday through Friday from 5:00 – 8:00 p.m. She makes dinner, cleans the kitchen, and takes care of anything that needs doing before they go to bed.

Mama and Margaret are still able to manage things at night, and on the weekends, as I usually go over on Sundays to spend the day with them and take care of the bills. I know there will come a time when they will need full-time, seven day a week help, but for now, our set-up works just fine.

I realize that I still haven’t answered the question of what will happen to Margaret when my mother is gone, and the truth is, we don’t have “a plan” in place. My mother and I have discussed it, but it’s difficult for her to talk about. I don’t think my mother ever considered that Margaret might outlive her. She feels responsible for Margaret, and doesn’t want my brother or me to “have to worry with it.” I have tried to assure her that this is no burden for me, and that I am honored to take care of Margaret; I only hope I can do as good a job as my mother has.

Two years ago, we set up a Special Needs trust for Margaret, so that any assets she has will be protected and not cause her to lose her government benefits. We also established guardianship so that I will become her legal guardian once my mother is no longer living.

What I hope for is that Margaret is able to continue to live in her home (which will go into the trust once my mother has passed on), and we will have wonderful people like Brenda and Marion to help out. Since I will be Margaret’s legal guardian upon my mother’s death, those decisions will be left up to me. My plan is, first and foremost, to do what’s best for Margaret, and to make sure that she continues to lead a happy and fulfilled life.

A. Embry Burrus, MCD, CCC/SLP
Associate Clinical Professor
Department of Communication Disorders
Auburn University
E-mail: burruae@auburn
Author: Mama and Margaret

Have you wondered who would take care of your family member with a disability? Do you have a plan? We welcome your suggestions and questions.

Welcome to the Grown Man Now blog!

Community Participation, Down Syndrome, Education, Mother of an Adult with a Disability, People with Disabilities 16 Comments »

We have been writing on blogspot and have decided to bring our blog directly to our website. Click on this image or the tabs above to explore the rest of the site, and come back to talk to us!

A screen capture from the Grown Man Now website.

Read Billy Schulz's blogs: "I Got a Good Life"

How different is Different?

Adults with Down Syndrome, Community Participation, Down Syndrome, Mother of an Adult with a Disability 9 Comments »

Just when I think I’m over it, it happens again.

Billy and I are in a waiting room; across from us are two girls in their early teens. As we sit down, they look up and stare intently, unabashedly, at Billy. He doesn’t seem to notice, but I feel the blood rising to my face. I wait a moment, they are still staring. What do I do? I stare back until they realize I am looking at them and they turn away, embarrassed.

This is an issue I address in Grown Man Now, an issue that continues to bother me. Somehow I always feel that I need to make them aware of their rudeness. One strategy I adopted a few years ago was to say, “You seem interested in my son. Would you like to meet him?” That generated some interesting reactions and probably gave me some satisfaction.

We like to be different in many ways; that makes us interesting. We hate to see someone wearing the same outfit we have on, but where do we draw the line? Teenagers want to have the same shoes, the same hair styles. We want our yards to look like the one next door. When does the difference start to attract adverse attention?

I guess what I’m feeling is that it is impolite to stare at anyone, for any reason. Billy’s facial characteristics are noticeably different from those of most people. Does that give them the right to stare, or am I overly sensitive?

There was a young man working at Food City who asked me, “Does Billy have Down syndrome?” I answered in the affirmative, not knowing what his point was. He continued, “I like the way he looks.” Now he has my permission to stare!

What do you think?

What Gets You Moving?

Aging, Mother of an Adult with a Disability, People with Disabilities 6 Comments »

“Want some good cup of coffee, Mom?”

I have never been a morning person. I wanted to rise up singing, but had to force it. My husband always brought me a cup of coffee to my bed, which I am sure made our first contact more pleasant. Of course as a teacher I had to go to work early and learned to manage it. However, when I retired, my first thought was “Oh now I can sleep late!” The choice is what makes it so nice.

Billy goes to work at noon, so our mornings are wonderful. I snuggle into my sofa nest, he heats the thing to warm my back, brings me a cup of coffee and we watch his favorite TV program, Regis and Kelley. After the first cup he goes back to his apartment and I quickly change channels. Then I am ready for the day. But I did take a cake out of the oven last night at 11:30.

What gets you moving?

Let’s Share!

Advocate, Down Syndrome, Family Challenges, Mother of an Adult with a Disability, Special Education, Teaching 7 Comments »

I see myself as a mother, a teacher, and an advocate. These roles merge into a lifetime of seeking solutions and sharing ideas, dreams, and answers. In the space of more than eighty years my family has expanded to include all those whom I have taught and who have taught me. Even the advocacy role began with my children and grew to include all persons who have been disenfranchised. So it seems that all of us are family and as family have much to talk about.

Let’s share!

This is my son Billy, who has Down syndrome. I have learned more from him than you can imagine. You can learn about our relationship and lives at grownmannow.com. (click here).

Eddy Kieffer was a student of mine at Western Carolina University. This picture was taken at his retirement party, where his merits as a special education teacher were celebrated. Click here to see Eddy’s comments.

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