All in the Family: When a Diagnosis Leads to a Family Business or Nonprofit – Part II

A diagnosis of a developmental, neurological or learning difference impacts families as a whole. So many of our best resources in Atlanta came into being because of this impact. Kids Enabled would like to highlight a handful of the stories behind businesses and nonprofits that were created to meet a need brought about by a diagnosis. Our hats are off to these amazing individuals who became part of the solution.

Part II – The Kiss Foundation Story

by Donna Johnson, The Kiss Foundation Founder

I soon came to realize that crying and complaining about the injustice was not the answer. I had to do something to make a change… The Kiss Foundation is the solution for families like ours and it is our goal to create welcoming environments for people with disabilities and their families.

My 12-year-old daughter, Kristiane (“Kiss”), has autism. During the summer of 2009, she was working with Jenny, her ABA (Applied Behavior Analysis) therapist, on developing her skills in the community. Jenny wanted to take Kiss to the library to teach her appropriate social skills and how to check out books, as well as give us an opportunity for a family outing. After first rejecting the idea in fear of how Kiss would be received and treated, I finally agreed on the condition that the library had a study room, just in case Kiss got too excited. The last thing I wanted was for her to be a disruption to the people in the library. After much discussion with Danielle (Kiss’ twin), Amaris (my youngest daughter), Brenda (Kiss’ sitter) and Jenny, we established a game plan and went to the library as a family. I was very nervous about this new adventure!

Upon arriving at the library, Kiss started talking because she was so excited about being at a new place. This immediately caught the attention of the librarians behind the desk, but I quickly explained that my daughter has autism, we were there to teach her how to work in a library, and that we needed to get a study room. They smiled and graciously welcomed us. It was going to take a few minutes to get a room, so Jenny decided to take Kiss to look at some books. The process of getting the room lasted much longer than expected, but surprisingly Kiss was doing very well in this new setting. She was doing so well, that I went to ask Jenny if she thought we still needed a room. She was also surprised, but felt it was best to get the room just in case.

I returned to the desk and after waiting awhile, I noticed Jenny heading for the door with Kiss. I asked if anything was wrong and she just smiled and said, “It’s OK. We are going for a walk.” I went back to the desk to wait for the room. Another ten minutes or so passed and I was then told that the room was ready.

After gathering the other girls, I went to the study room and immediately noticed that Jenny was visibly shaking and upset. I asked her what was wrong and her response shook me to my very core. She said, with tears in her eyes, “In all of my years of working with people with disabilities, I have never been asked to remove a child with a disability from a place.” She then shared with me that the security guard told her to take Kiss out of the library because she was disturbing the other people. I did not understand that because I only heard Kiss say something once or twice and it was not any louder or disruptive than any of the other children in the library. It was summer and the library was filled with children reading and talking.

At that very moment, my fear of being rejected was realized and my “momma bear” instinct kicked in. I quickly went to the security guard to ask him why he had told Jenny to remove a child with a disability from the library, especially since he knew why we were there and we were waiting for a room for her. His response brought me to tears and showed me just how important it is to educate people about working with and providing services to those with disabilities.

He told me that people were complaining and that she was a disruption. But did he explain to the complainer that Kiss was a child with a disability and we were waiting for a room? Did he consider that she was here to learn appropriate library behavior? Just like other children do?

He looked at me and said, “No.” He could see that I was upset; tears were running down my face and my anger had turned to pain and sadness. He explained that it was no different than asking a mother with a crying baby to leave.

I tried explaining to him as calmly as I could that it was not the same — this is a child with a disability. He said to me sternly, “The library is for everyone.”

Trying not to make the situation worse, and being very aware of my two other children watching and listening from the other room, I replied, “At what point are you going to realize that she IS part of the ‘everyone’ and she has a right to be here?”

I began to realize that it was his lack of knowledge and experience that caused him to respond in such a negative manner towards my daughter. Slowly my anger and frustration turned to compassion and sadness for him. I was sad because here was a man, trying to do his job, but not properly educated on how to interact and serve people with disabilities and their families. I was sad that he was so focused on doing his job that he could not see the pain he was causing my family and wondered how many other families had experienced this pain.

He said, in what probably was his way of apologizing, “Maybe next time, you can ask to use the room where they read books to the children during the week.”

I looked at him, still with tears in my eyes and simply responded, “And maybe next time you can be part of the solution instead of the problem.”

I then packed up what little pride I had left, wiped my tears and went to the bathroom to get myself together before going back into the study room to talk to my children. As I walked, several people in the library tried to console me.

I had to let my two girls know I was sorry, because prior to going to the library they expressed their concerns about the possibility of people mistreating Kiss. They told me that some people don’t understand our family. I assured them that it would be fine…

Fortunately, Kiss loves everyone regardless of how they treat her, so as we left she looked at him and smiled.

After leaving I immediately called my husband, Ken, to tell him about what had happened and I could hear from his silence just how hurt he was.

That night my family did not sleep and the next day I found out that Jenny and Brenda had a rough time processing what had taken place as well. We spent that rest of the day just talking about the situation and asking, “Why?”

What happened to my family was a wakeup call. I soon came to realize that crying and complaining about the injustice was not the answer. I had to do something to make a change. After crying on the shoulder of my husband, father, brother and close friends and discovering that some of my friends who have children with disabilities had similar experiences, I decided to do what I had asked the security guard to do, be a part of the solution. If the lack of knowledge and understanding was the problem, then the solution is educating people about how to serve and work with people with disabilities. The Kiss Foundation is the solution for families like ours and it is our goal to create welcoming environments for people with disabilities and their families.

Please visit www.thekissfoundation.org to find out more about this incredible organization whose mission is to build community bridges by promoting respect, understanding and acceptance of people with disabilities through advocacy, family support, and Disability Awareness Training and Education and to empower parents of children with disabilities to create welcoming environments in their community.

2 Comments »

RSS feed for comments on this post. TrackBack URI

1. Hi Donna,
   What a great story! I am so proud of you and your work for your daughter. It is sad when people mistreat others who have disabilities and fail to see them as people like everyone else. Kinda reminds me of my story.

   Keep up the good work. Your girls are lucky to have you as a mom.

   Angela

   Comment by Angela Johnson — November 18, 2011 #

2. I teared up reading your story, Donna. You’re an amazing woman with an amazing family. The community is thankful I’m sure for the work you do.

   Alison

   Comment by Alison Ratner, LCSW — January 17, 2012 #

Leave a comment