When the going gets tough...

...the tough get going. That's a good quote to describe Shirley, the mother of a 19-year-old boy named Gabriel with Licensephaly. For years, Shirley tried to integrate Gabriel into normal schools without success. She finally found a school for him with others that share his difficulties. To be near him, she started renting a home nearby.

Gabriel requires assistance 24 hours a day, 7 days a week, and she is normally the one to provide it. This is true for most mothers of children with disabilities. It can be very stressful and take a toll on a woman's mental and physical health.

Recognizing this, Shirley started an organization Associacao de Mae Especiais (AME). In the beginning, it was a group of mothers from the nearby school for students with disabilities who would gather cans, crush them, and sell them to earn a little money to help support their families. But the neighbors complained about the noise so they had to find an alternative. Instead, neighbors started donating items (clothing, jewelry, etc) and they started a Bazaar. The association now helps 36 mothers with finding jobs, therapy, and event donated food once a week.

Gabriel's school is just one block down the street from AME, which is a huge convenience for the mothers. The school is public, funded by the government, and free to the students. They serve students age 6-40 with significant disabilities.

Shirley and Gabriel rent an apartment just a few doors down from the school. It is nice, but small and has very tight hallways and spaces, making it difficult for wheelchairs and other mobility devices.

Today we introduced to Shirley all of the projects that we created for her and Gabriel so that she can use them this afternoon and provide any feedback or needs for adjustment tomorrow when we return.

The bedrails were designed to help keep Gabriel in his bed. Currently, Shirley pulls a trundle bed out to catch him if he falls, but it is unstable and uncomfortable. Two different groups made two differing products that she will try. She already knows of another student that would benefit from the second product!

A PVC shower chair was also created. The design is very sturdy, and Shirley was quite impressed! She loves the size, accessibility to all parts of Gabriel's body, and securing device. She was ready to try it out while we were there! We look forward to hearing how the trial went.

Gabriel loved his finger protection device! He had such a huge smile that I almost cried. He seemed to be reaching out like he was Spider-Man. Shirley was also very excited about the drool handkerchiefs and apron. She told a story how just yesterday he was all dressed up nicely at a dinner but had food all over himself. She is excited to be able to use it and help him maintain his dignity.

Updates on the other projects to come tomorrow!

Today's reflection: What a great day! Something I pointed out at midterm time was that I LOVED that most group's included Gabriel's mother, Shirley, as a stakeholder. All too often the stress on the mother of a child with disabilities (or any child) is ignored. What are your thoughts on what they do at AME?