A Father’s Perspective

Bob

When you have a child or children with life-long disabilities, it changes the nature and indeed, the definition of child rearing in a profound and lasting way. Raising children becomes a decades long process, with tangible concerns moving well beyond the parent’s actual lifetime. Friendships are impacted. In the end, we navigate the path much more alone than do parents of typical children.

Bob (Mae’s dad)

Bob’s daughter Mae was featured in blog posts on July 19 and August 1, 2015 at https://realstoriesrealpeoplega.wordpress.com

 

 

Interview with Mae

Mae in red chair

Interview with Mae

Beate: Mae, would you please introduce yourself?

Mae: I’m Mae and I love to swim, go to movies, exercise and get massages. I am a kind person and I am very nice to be around.

B: Mae, can you talk about your disability and how it affects your life?

M: I have schizophrenia and autism.The medication (for schizophrenia) makes me hungry but I like to eat healthy. We all have things we need to work on but sometimes I forget about things and people have to tell me what to do instead of me taking the initiative.

B: You will be aging out of high school in November. Are you excited or nervous and what do you hope to be doing?

M: Probably get a job walking or training dogs or working with flowers. I’m excited to be going to job training.

B: Why is it important to you to get a job?

M: Because then if I can buy stuff I’ll be all set. I can buy my own furniture and food. If I can get money I’ll be prepared for the real life

B: When you are ready to move out of your Dad’s home what are your plans?

M: I want to live in a beautiful home with friends and have my own bedroom.

B: Do you think that you will need some support to live on your own?

M: I wil probably need support with hygiene like reminders to brush my teeth and hair and get showered. I know how to cook spaghetti and eggs.

B: Do you have a message that you would like to share with others?

M: That I hope to have a good life.

A Mother’s Thoughts About Transition

Mae at Graduation

Mae is 21, and has an amazing support group consisting of me, her dad and his new wife, a younger sister who is also disabled, a few friends, family members and teachers.  Mae participated in the graduation ceremonies at Decatur High in May of 2015.  When she turns 22 on November 14, she will age out of the public school system.  Mae lives with her dad; Mae’s sister lives with me.  Mae’s dad and I know how much support and care it takes for both our daughters to get up in the morning, shower, get dressed, eat and get to school.  We realize that when the girls age out of high school, we will need to work harder to coordinate job training or continuing education.  We must also work to secure a place for them to live which is connected to community, transportation and jobs. In order to ensure a smooth transition for Mae, she will need support in the form of paid counselors, job trainers, exercise mentors, housing and personal care coaches and social skills teachers. Mae does not have a Medicaid waiver to pay for these supports and she has been on the short-term waiting list for six years. The task of coordinating support for Mae will ultimately fall to us, her parents. However, we work at paid jobs and are taking care of our own aging parents while getting older ourselves. I am not giving up hope that Mae will be able to live a good life, but I am concerned whether we will have the stamina and financial resources to make it happen.

Terri (Mae’s Mother)

Rickey’s Story

Rickey-1

Rickey works part-time at Golden Corral. Although he is a hardworking and dedicated employee, he is at risk of loosing his job because he cannot consistently get to work. His family does not own a car and there is no public transportation in his community.  Rickey’s story embodies the difficulties families face when they are living with economic challenges in addition to caring for a member with a developmental disability.

To view the full story visit  http://www.realstoriesrealpeople.org/rickey/

FUNDING UPDATE

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Rickey and Video Game-1Rickey spends much of his day playing video games at home.

I am very grateful for the generosity of those who have donated to my project “Real Stories, Real People”I will use these funds to create a publication that will be distributed to the public and Georgia policymakers free of charge. This publication will include the photo essays I am creating about individuals who are living with a developmental disability (DD) and their families and information about DDs. I have embarked on this project because Georgia is in a state of crisis as it pertains to funding and providing supports to individuals with a DD. There are over 7,500 people on the waiting list for a Medicaid waiver in Georgia and this past legislative session our policymakers appropriated funds for only 75 additional waivers. What this means is that people like Rickey Armstrong (blog post from April 14) risk loosing their lifeline to the community because they do not have the supports in place to ensure their success. Rickey has a job at Golden Corral, 12 hours a week, but has come close to loosing his job because he cannot consistently get to work. His family does not own a car, there is no public transportation in his community and it is difficult to rely on neighbors for a ride. If Rickey had a Medicaid waiver he would have access to supports that would provide transportation to work and supports to assist him in developing the skills he will need in order to live an independent and integrated life in his community. Without funding for supports, Rickey could potentially end up sitting on his couch for 12 hours a day playing video games. This is not a life.

Please support my project so I can be the voice for the thousands of people in Georgia who are living with a DD and who are in dire need of funding for supports. Educating the public and Georgia policymakers is paramount in creating change. You can help! To make a tax-deductible donation please connect to the link below.

http://www.realstoriesrealpeople.org/donate/

Honoring a Legacy

Donald and tattoos-1I

In my last blog post I introduced you to Donna Armstrong, a grandmother who has been raising her three grandsons for 19 years. Despite the many challenges she has faced, she has persevered and has been successful in raising  three wonderful young men, including 24-year-old Rickey who is living with a developmental disability. The second time Ms. Armstrong was diagnosed with breast cancer was especially frightening for her 20-year-old grandson, Donald (on right) and daughter, LaKisha (on left).

When my grandma was diagnosed with breast cancer for the second time it was kind of heartbreaking because it was a crucial moment in my life. I was about to graduate from high school. It was very difficult for me to think about the situation and imagine what it would be like if she didn’t survive. I thought about how I could still have her around if something happened to her.  So I thought why not get a tattoo, something she would appreciate, something to keep her legacy going. Therefore, I went and got the tattoo. It hurt a lot but love hurts.”

Donald

Shortly after Donald got his tattoo, LaKisha got hers.

A Courageous Woman

Donna Armstrong

Ms. Armstrong keeps an eye on her grandsons on the basketball court from the kitchen table.

Rickey and Reggie

Rickey (right) with brother, Reggie.

In a post from April 14th, I shared Rickey’s story about his job at Golden Corral. This post is about Donna Armstrong, the courageous and dedicated woman who raised her grandson, Rickey. Before Ms. Armstrong took custody of five-year-old Rickey and his two younger brothers she had been in a relationship and was getting ready to get married.

“He had been there all this time, while the babies had been born, sitting at the hospital with me, changing diapers. But as soon as I got custody of them, it was a different thing. So when he left it was just me and those babies, no job, no income, no transportation, no nothing, just me and the babies. I couldn’t work because there was no one I could trust to watch them. So I had to wait for federal assistance, welfare and food stamps to kick in. I got these babies in May, I didn’t get food stamps until September. I got no money until October. That was the lowest part of my life. Knowing that I had the responsibility for those kids and seeing no resources coming.”

Since that time, 19 years ago, Ms. Armstrong has successfully raised three boys single handedly. She has survived breast cancer twice and has undergone brain surgery that impaired her short-term memory. Despite these challenges Ms. Armstrong has always been there for her grandsons and still is.

The hard part now it is that they are growing up and becoming more independent. The area we live in isn’t the best. Like a lot of times when they go to the basketball court, I sit here. That’s why it is my favorite spot. I can hear when something’s going on. Like I can hear, “Yeah, yeah, I made a basket.” But if there is a mess going on, someone is trying to fight, their tone gets different. Just being a mama I get tuned in. I’ve got three of them so that’s when I’m going up there to see what is going on. That’s the most difficult, like with any parent, turning them loose and giving them that independence. You just have to have your faith and belief that what you’ve told them and taught them will stay with them. Because when they leave out this door I’m sitting right here. The young men have to find their way, but there is too much out here you don’t want to just turn them loose.”

At the completion of my interview with Ms. Armstrong I asked her what she hoped to portray and share with others. This was her response:

“We have had challenges and obstacles in our way that could have really kept us from being a family and staying together as a family unit but I’m a praying woman and I believe in the Lord. It has been my faith that has carried me through. It’s been just me and the three of them. The four of us together is like a fist. We have to stick together. When one can’t do then the others gotta come and wrap their arms around them and keep them right there. When one ain’t got, then we got to see what the other one got. If there ain’t but one piece of bread then it gets cut up into four pieces. It’s just that simple. But they know about family. I’ve instilled that in them. There is nobody but us. I’ve given all that I can give them.”

FUNDING UPDATE

Barometer markedDecatur Baseball Team-1

I wish to extend a huge thank-you to the Decatur Baseball coaches, players and parents for supporting my project, Real Stories, Real People. This past Monday evening I was asked to throw out the first pitch. This was both an honor and a humbling experience. My pitch soared sky-high and plopped down short of home plate. As I walked off the mound towards the dugout I was intercepted by one of the graduating seniors with an envelope which contained a very generous donation for my project. Despite my lackluster performance this was an evening that touched my heart and will always be treasured. The game ball sits on my desk, scuffed from bouncing in our red Georgia clay; a reminder of a special evening and a remarkable group of young men.

To make a tax-deductible donation visit my website at http://www.realstoriesrealpeople.org/donate/

The Stewart Family Story

Stewarts-2Stewarts-1

“We have an incredible family life but it is a very fragile one. Any significant event to either of us puts the entire family at great risk. We struggle to keep up with the daily routine. As Diane and I transition from middle to old age, we will not be able to continue being caregivers with any effectiveness. Unless programs and funding are in place, our family’s story does not have a happy ending.” 

Pat and Diane Stewart

View the full story at http://www.realstoriesrealpeople.org/aaron-and-ryan/.

The Stewart Family story embodies all the challenges that families face when caring for a child with a developmental disability. Their story is a complex one for several reasons, one of which is that Pat and Diane are caregivers to two grown sons. Pat and Diane live with emotional, physical and financial challenges that most people cannot even begin to fathom. They have been the sole caregivers to Aaron and Ryan for almost 22 years and have never received any funding for support. In addition, Aaron is aging out of high school in one month and without support services and a plan in place he is at risk for living a life of isolation. Despite the challenges these parents face, Pat and Diane are not only concerned for the future of their sons but also the future of all persons who are living a with a disability.  As Pat and Diane struggle to keep their heads above water they are thinking about ways they can advocate within their community to ensure that all citizens have the opportunity to live meaningful and productive lives.

FUNDING UPDATE

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In the last three weeks, an additional  $1,000 has been generously donated to my project, Real Stories, Real People. I am 25% of the way to meeting my goal by May 31, 2015. These funds will be used to create a publication that will educate the public and Georgia legislators about developmental disabilities and the importance of funding to support this population. Please consider making a tax-deductible donation. No amount is too small and any donation is highly appreciated. To make a tax-deductible contribution visit my website at https://beate-sass-s2n1.squarespace.com/config#/|/donate/