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. I have schizophrenia and autism. I would like to get a job walking or training dogs or working with flowers. I want to live in a beautiful home with friends and have my own bedroom. I hope to have a good life."

- Mae

 

Mae will age out of high school on her 22nd birthday in November of 2015. Although Mae has a solid support group composed of family, friends and teachers her needs for support will increase dramatically when she is no longer in school and her school based supports will vanish.

"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. 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)

 

"Mae’s mom and I divorced when the girls were 8 and 4. Mae lives full time with me and her 17-year-old sister, Lena, who also has autism, lives with her mother. 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 father)

 

"Mae has had a long history of emotional-behavioral problems which were eventually diagnosed as schizo-affective disorder, but not before major domestic upheaval over trying to manage her.  She will remain on her medication for the rest of her life. She is fairly good about remembering to take her medication but that is not good enough.  She needs support for this, for hygiene, for diet and nutrition, and perhaps most importantly, support to stay engaged in a community of friends and peers."

 - Bob

 

Mae works in the cafeteria at Agnes Scott College once a week through a job-training program at her high school.

"Once Mae ages out of high school in November our focus will be on job training. Mae is very capable of working, but she will need perhaps a year of social skills, community navigation and job training before she would be ready to be placed, then who knows how many months of job coaching. However, at some point I believe she will make a good employee and by working, she will begin to return Georgia’s investment in her."

- Bob

Mae waits over an hour for MARTA Mobility, the Atlanta area's paratransit system, to pick her to take her to her summer program.

"Without support, Mae is going to be an at-risk individual. We can provide for her for the time being but will struggle to find safe and appropriate volunteer opportunities and transportation for Mae so she doesn’t simply remain at home doing nothing."

 - Bob

 

Bob coaches Mae in preparing dinner. 

"Mae does not have a Medicaid waiver to pay for supports and has been on the short-term waiting list for six years. Living in a supported home with as few restrictions as possible will be key to Mae and Lena’s long-term mental and physical well-being. Their challenges and needs are eminently manageable for people with wealth.  Without that wealth, it creates a reliance on state supports which are erratic, poorly funded, and which place a huge burden on parents trying to find help."

 - Bob

 

Mae, Bob and Lena, left to right

"Through all these trials and tribulations, we are raising two girls who continue to be loving, kind, caring, and all around wonderful people who would befriend every person they meet, and certainly talk to anyone and everyone without discrimination or discernment.  Their challenges are not due to anything they have done wrong or chosen to have...it’s all just an unforeseeable and unfortunate genetic abnormality.  They rarely complain about the limitations they recognize in themselves and move through life with a sort of stumbling grace I envy.  I am their father and I love them and hope we as parents can put things in place to assure reasonably full and meaningful lives for them."

 - Bob