I Take Kevvadit.

Adults with Down Syndrome, Family Challenges, Independent Living, People with Disabilities, Siblings 3 Comments »
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This my sister, Mary, safe and sound.

This my sister, Mary, safe and sound.

Hi! Happy Friday.

Today, I go to work. But before I go to work, I like to tell you bout last night. My sister did come over for dinner. My mom is cooking. DE-licious eggplant casserole, and me and my sister SO hungry. It is so good, my mom is a wonderful cook.
I pass the pepper to my sister. Have to look, is it S or P on top. I tell my sister, “Mary, Jos is gone on business trip, I like it you eat with us every night. My mom is cook for you, and you work so hard, and you not have to cook.” My sister likes that.
Then I think about it a lot. Mom and Mary talking about a lot of things, I not like to rupt. Then, alla get quiet, I tell my sister, “Mary, Jos is gone on business trip, right? Well! I got a great idea. How bout, on you anniversary, and you so lonely, I take you and my mom, going OUT to dinner, and then, we see a good, good movie! You like that?”
My sister say, “Aw, Billy, that’s a nice idea! What movie you like to see, my anniversary?”
I tell my sister, “Green Lantern.”
My sister and my mom laughing so hard. But I like Green Lantern.
My mom say, “That Green Lantern is CUTE.”
I did see that on Regis and Kelley.
Then I did clear the table. My mom and my sister got to put that new sprinkler outside, water the flowers outside. Because we got not rain, just dry inna bone. That sprinkle go round and round and my sister get all wet. But my mom is laughing so hard. And it’s funny.
And then, my sister ready to go home. I tell my sister, “Mary, Jos is gone on business, right? Well, I got a good idea. How bout I walk you home, you not be lonely. You like that? OK, I go to put on my tennis shoes. You wait for me.”
My sister walk with me to her house. Sometimes, inna corner, my sister go up the hill and I go back to my house, see my mom. But not now, because I need to take care of my sister. So I go all the way. My sister likes that.
My sister say, “Bye, Billy, I like it you walk me home.” She wave. But I not go yet. I got to wait. Mary open that door, and she wave at me again. Mary tell me, “Billy, you take good care of me. Thank you.”
I tell my sister, “I do Mary, cuz I love you. Mary, you gotta problem? ANYTHING. You call me. I take kevvadit. I not like you be lonely. You call me. I call you I get home, you not worry. OK? I hope you gotta good night sleep. Bye!”
But I not go yet. I wait, my sister lock that door. Cuz I love her. And now my sister safe and sound. I like that. I am good to my sister. Cuz I love her.

A Good Christmas

Community Participation, Friends, Inclusion, Inspiration, Uncategorized 4 Comments »
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Billy and Jonathan, Together for Christmas

My friend, Jonathan, came to visit. We had snow that day!

Billy and Jonathan, Together for Christmas

Jonathan brought Christmas presents for me and my mom. And I had a present for Jonathan and Danielle, too.

I had a good Christmas! My nephews Daniel and Warren were here. My brother Tom and sister in law Sheila were here for a week and we all had a good time. My mom got huge stockings for everybody. Mary put a picture on every one. They were pictures of when we were little. It was so funny!

Mom made my favorite breakfast. Ham biscuits and cheese grits and other stuff. It was so good. Then we all opened our stockings and laughed a lot. I love my family and I love Christmas.

The day after Christmas I had a great surprise. My friend Jonathan came to see me. You member him. We worked together at Food City. Now he lives in Alabama. He stayed all afternoon. We went down to my partment and talked and laughed a lot. Jonathan is my best friend. I miss him a lot. I was so glad to see him. I think he will come back for Easter. I hope so.

My nephew Paul and his wife Edna came for New Year’s. We had a good time with them too. When they left my mom and I went to church. When we came out we had a flat tire. Now the holiday is over.

I hope you had a good Christmas too. And Happy New Year!

Love, Billy

P.S. Now that Christmas is gone, it’s okay for me to talk about my birthday.

Independent Living (Part 3)

Advocate, Community Participation, Disability, Family Challenges, Inclusion, Independent Living, Parents, People with Disabilities No Comments »
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The American Disabilities Act proclaims that all persons with disabilities are entitled to independent living. Just as families have different needs and resources, independent living can be provided in different ways. In previous blogs we have examined state institutions, a private residential institution, and the abundant living situation of a young woman making her home with her mother. Another alternative is the group home, designed to serve children or adults with disabilities. Such homes usually have six or fewer occupants and are staffed 24 hours a day by trained caregivers.

Although most group homes provide long-term care, some residents eventually acquire the necessary skills to move to more independent living situations. The development of group homes occurred in response to the deinstitutionalization movement of the 1960s and 1970s. They were designed to provide care in the least restrictive environment and to integrate individuals with disabilities into the community.

Since the passage of the Community Mental Health Centers Act in 1963, grants have been available to group homes. Although state and federal funds continue to support the majority of group homes,  some homes operate on donations from private citizens or civic and religious organizations. Unfortunately, the number of available group homes has not always matched need.

One of the goals of group home living is to increase the independence of residents. Daily living skills include meal preparation, laundry, housecleaning, home maintenance, money management, and appropriate social interactions. Self-care skills include bathing or showering, dressing, toileting, eating, and taking prescribed medications. Staff also assure that residents receive necessary services from community service providers, including medical care, physical therapy, occupational therapy, vocational training, education, and mental health services.

As with any type of organization, some group homes are better run than others. Factors that contribute to group home success are a small staff-to-resident ratio, well-trained staff, and a home-like atmosphere. Before considering group home placement, extensive planning should be conducted. The individual’s strengths should be incorporated into the plan whenever possible. For example, if a supportive family is an identified strength, the preferred group home should be close in proximity to facilitate family visits.

Sometimes, when a group home or other desirable facility is not available, devoted and energetic parents and volunteers elect to build a suitable home for people with disabilities in their families or community. Our next blog will introduce a parent whose efforts are endless in developing an independent living situation for her son and others.

A Special Message

Courage, Family Challenges 3 Comments »
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This blog was written by my daughter, Billy’s sister, Mary de Wit.

Words are venerated in my family. We attempt to use them with precision, whether writing or brainstorming or popping puns like shuttlecocks across the table at each other. They are electrically charged and elicit visceral responses, and we are sensitive to alternative word uses.

This summer, I watched five boys play baseball. Their voices were isolated and magnified by a leggy hedge and the gloaming. “Hit the ball, ree-tard!” yelled one of them. I cringed. We never said retarded in a pejorative sense at our house, where the word indicated a badge of courage, a moniker of challenge. “Retard” was the local pronunciation for no longer working your job of twenty-five years. And retarded was carefully used as a synonym for slow. Progress may be retarded, but still made.

The word “special” holds high voltage with us. If you were called special around our table, you may have had Down syndrome, or you may have received all A’s on your report card. You may have made it through a rigorous Freshman semester at the Citadel, or conducted an oxygen exchange experiment with frogs. You may have sold a million dollars’ worth of insurance in a month. Or maybe you raised four children, taught Kindergarten and commuted to a university to earn a degree. All of those things were considered special.

Our family was bound together with low-tack adhesive like masking tape. Occasionally realigned, changes left historical records in batik-like patterns after the paints spattered with each move, each project, each endeavor. It takes time. The process is sometimes retarded by circumstance. The outcome is special: a work of art.

When Snow Comes to Kingsport

Employment, Family Challenges 4 Comments »
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We have a steep driveway. When the house was being built, people asked me, “What will you do when it snows?” I replied, “I’ll stay home.” Billy does not like snow because he has a fear of falling, based on an experience when we had a deep snow in North Carolina. Our friend Michael offered to drive him home from work one evening last week when I was unable to navigate our driveway. He put Billy out at the top of the hill; I was watching from the open garage door. Billy promptly slipped and landed on his behind. As he panicked, I suggested that he slide down on that largest part of his body. He slid into home while both of us laughed!

This morning, with renewed snow and impassable roads, Billy and I sat with our coffee watching the snow falling and contemplating our strategy. We finally determined that we would have to call Food City and inform them that Billy would be unable to work today. The phone rings: our friend visiting next door, our friend who has a four-wheel drive car, called to ask if we needed anything since he was going to the store. Billy was delighted to have a ride because he knows they really need him on such a day. Then Jos called to say he would pick Billy up tonight and bring him to the back door rather than the driveway.

So here we are: two rather fragile people with a steep driveway, with remarkably kind friends and family. God is good.

With Billy at work, I have several options. I can finish putting away the Christmas decorations, write thank-you notes, or I can take a nap. Care to make a guess?

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