My Brother’s Courage

Independent Living, Parents, People with Disabilities, Siblings 11 Comments »
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Billy Schulz Shovels Snow for His Mother

Billy Schulz Shovels Snow for His Mother

The bad weather we have had recently requires determination and courage and extra hard work for many of us. Billy’s service to me inspired his sister, Mary de Wit, to compose this poem for us.

My Brother’s Courage

My brother’s courage grips my heart these ways:
He concentrates on lacing tight his boots,
Assembles hat and gloves and arctic suit,
And with resolve, he steps into the haze.
His mission is to fetch the frozen news,
(This, after warming Mother’s shoulder pad,
Insuring she her phone and coffee had.)
He, cautiously, his icy way pursues.
His life is full of fear. Afraid to fall
On snow — or tumbling from a vista deck—
Offending, being dumb, bouncing a check…
Still every day he faces: smiling, tall.
From his perspective he might call us this:
Retarded, learning slowly who he is.

© 2011 Mary de Wit

The DIGS Story (Part 2)

Advocate, Community Participation, DIGS, Disability, Diversity, Family Challenges, Friends, Inclusion, Independent Living, Mother of an Adult with a Disability, Music, Parents, People with Disabilities 1 Comment »
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Barbara Monday continues her story of the journey to seek community living for persons with disabilities in Rome, Georgia.

Setting up the DIGS, Inc. non-profit corporation was found to be the easiest step in our primary mission to provide housing.  As we met and discussed our plan with others knowledgeable about construction costs, we developed a goal of $250,000 for our first personal care home.  This was a very conservative goal with the hopes of receiving community support in the form of donations of goods and services.  Although we are a very focused and determined group, none of us had much experience with fundraising and other roadblocks soon became evident.  As a newly formed nonprofit, the community had no knowledge of us and our mission.  We had no ‘track record’ of any accomplishments or evidence we could or would stay in existence.  The most surprising obstacle was the degree of discrimination and fear that still exists towards adults with developmental disabilities living in personal care homes in the community.  We all recognized it was going to take us a long time to build our first home.

The "Just As I Am" Choir

The "Just As I Am" Choir

After several meetings and brainstorming sessions, we realized we could move forward much more quickly with other parts of our mission statement.  We had so many good ideas for leisure opportunities based on our adult children’s special interests and abilities. The city/county recreation authority agreed to help with places to meet.  A special education teacher with a background in music agreed to be our choir director and the ‘Just As I Am’ choir was established in November 2007.  Armed with a Christmas music cd and a t-shirt for each participant, the first performance took place in the food court of our local mall.  What magical joy each participant and parent/caregiver experienced that night!  It didn’t matter that some had difficulty speaking and only some could sing.  Everyone was a performer. A large audience of friends and shoppers gathered and shared this special moment. What a wonderful gift to all! 

The choir has helped to further the mission of DIGS in many more ways than expected. They perform regularly and receive donations. Word has spread through the community about the choir and what DIGS is all about.  But most importantly they have helped to form a cohesive group that has become a ‘family’.  Many parents/caregivers did not know each other and now are a support group to ‘go to’ with questions about the system, concerns about handling difficult situations, carpooling to performances and more. We all share the joys of watching our ‘children’ grow in their performing abilities, increased self-esteem, confidence and friendships.  We have also discovered that although each individual’s story of disability is different, we all share the common bonds of frustration (sometimes), guilt (sometimes), grief (sometimes) and unconditional love (always).

The "Snap Happy Camera Club"

The "Snap Happy Camera Club": Again the t-shirt was important. To the members, it was a symbol of belonging. To the mentors, it meant "We can find you on a photo shoot." To the community, it seemed to mean, "Here are some people doing something I didn't know they could do."

We knew we were now on the right path and the Snap Happy Camera Club was formed in the spring of 2008. We planned for about ten to join but, nineteen attended the first meeting.  It appeared that our ‘adults’ were so hungry for activities to do where they felt accepted, they would attend anything…..even if it was something they had no interest in.  The attendance has now dropped to about fourteen regular members.  Using ‘point and shoot’ digital cameras, they enjoy going to different places of interest in the community to take pictures once a month. Curious onlookers will ask who we are.  They are impressed by the devotion of the photographers and the joy they show when they find a ‘good shot.’  Once a year, their photos are entered in the local fair with no special designation.  Some have won honorable mention ribbons.  The local convention center has a display of their work.  Using a strength with visual skills and unique perspective on the world, there has been a noticeable growth in their abilities since the club was formed.  Many take their cameras with them on vacation or around town and are using their cameras independently, just like anyone else.

Recognizing some true artistic ability by some of our members and love of creating by others, we next formed Art Hearts art club in 2009.  Volunteer art instructors teach a variety of skills from water color, acrylic, collage, to working in clay.  Membership is limited to fifteen, so each member will have the time, attention and space to work. Many parents/caregivers stay to lend a hand with passing out materials or extra help with the project. Without exception, art instructors want to sign up again to teach a class.  They will often remark about the genuine nature of our adults, the joy they show in their work and the appreciation they show towards the instructor.  Many of the projects become gifts for someone they care about.  Adults with developmental disabilities often don’t have the money or opportunity to purchase gifts for family and friends.  What a boost in esteem and feeling of independence it must be to give such a gift.

Goodbye Jonathan

Community Participation, Employment, Friends, Inspiration, People with Disabilities 8 Comments »
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Jonathan is my best friend. When I started my job at Food City, I was so confused. Jonathan was my helper. He showed me how to pack bags. Put the cans on the bottom. Put the eggs on top. Put the pie by itself in a bag.

Jonathan showed me how to bring in the carts. He got in front. I got in back. We pushed the buggies together. We had fun doing that. He teased me and I teased him. We laughed a lot. In the winter we put on gloves and jackets. One time I fell down. He helped me up and I was all right. What I like best is parking the buggie cars. It’s like driving a car. Jonathan said take it slow and be careful. He told me to help Martha in the video shop. I help check out the DVDs.

He told me not to take too long at breaks. He said if the groceries go too fast I ask the cashier to help. He said don’t fool around when it’s busy. Be nice to the customers.

Now Jonathan is gone. He and his wife moved to Alabama. He left last Saturday. Me and my mom took Jonathan to lunch one day last week. Mom went home. Jonathan and I hung out at the mall. We went to FYE and I got him a DVD of The Lone Ranger. He liked that. Then he brought me home. We hung out at my partment. I cried when he left.

We had a party for Jonathan at Food City. Courtney brought freshments and everybody came. Ed said Jonathan will be back but Jonathan said nothing.

I miss Jonathan. He is like my big brother and my best friend. I hope he is happy in Alabama. I try to get over it but I do miss him. It’s breaking my heart.

Have you had to say goodbye to a good friend? How do you deal with the loss? How can we help Billy?

What Gets You Moving?

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

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