This is a post from my friend Wanda Van Metre Felty from NHS Heroes where you can buy Codeine as well. I met her in Oklahoma and fell in love with her family and her story. I thought you would all enjoy reading her story, so I asked permission to reprint this for my blog. It’s definitely something that you will want to share with teachers, photographers, friends etc. Thanks Wanda for sharing from the heart.
When Kayla was 10 years old, we were sitting in the waiting room of the area “therapy center” for children with developmental disabilities. She had been receiving occupational therapy in that center since she was 2 years old. In fact, she took her first steps in that center on her 2nd birthday. That center had been part of our life for the past 8 years. It was a place where we belonged and was loved.
On this particular day, we sat waiting for our therapist to come get Kayla for her aquatic therapy. The center had built a new facility in the years we were there and now Kayla was able to receive her therapy and work on self control in a small pool, and it was doing a great job at helping her regulate and process her environment. We both would get excited on Tuesdays when we went for therapy. It was a treat. Well except on this day.
While waiting for her therapist a newspaper photographer came and checked in with the front desk. Just like many other offices, anyone sitting in the waiting area would be privileged to overhear any conversation at the reception desk. The receptionist paged the contact person for the photographer,and they made small talk while they waited. It seems someone had made a large donation to the center and they wanted a photograph for the local paper with a child holding the over-sized check. The child they were waiting on had canceled and wasn’t going to be there that day. The center became a buzz while they franticly walked around looking for a child to hold the check in the picture. As I listened and watched, my heart broke and tears wailed up. During this frenzy, Kayla’s therapist came to get her to go back for therapy. I went back with her, not wanting to continue to sit in the waiting room while they tried to find a “good” candidate for their photograph.
Kayla was in her session for about 40 minutes. After changing back to her clothes we walked out of the center. While walking out we passed the photographer taking a picture of a about 8 year old child holding this over-sized check, being as cute as a button. We got in our car and drove home. Tears now flowed with no need for me to hold them back in the privacy of my car. Kayla was not visibly aware of what had just happened. She didn’t realize that she was not thought to be “cute enough” or an ideal visual for the center. She didn’t know because she couldn’t talk and she couldn’t see, she was the “right” child for this publicity event. But I saw it, I knew, and it hurt.
When I got home, I went straight to the phone and called the director of the center. Her family had created this center to help children, because they had a child with severe disabilities. Because of this they knew and understood, or so I thought. I told her how I felt sitting there as if we didn’t exist as if we were chopped liver. I remember saying those words to her. I remember as if it were yesterday.
The story doesn’t end there. A short time later, I received a phone call from Martha, one of the therapists who had been at the center way longer than Kayla had been there. She called to ask if Kayla would like to participate in their annual Christmas play. Kayla was 10 years old and had never participated in a play, she had never been invited to participate, to be a part of, to belong, not at church, not at school. But she got the call. I had no idea if she would be able to participate or if the crowd would get the best of her, but I agreed. I borrowed an Angel gown from our church, and made her the easiest halo possible, in hopes she would wear it. Oh how proud I was of her. She was the tallest, oldest and prettiest angel at that play. I was the proudest, tears rolling, smiling ear to ear, mom at that center that day.
The hurt, the pain, and knowledge to know someone didn’t think your child was important enough, that my child wouldn’t be the right child. Why? I can only speculate, but after another 12 years since that time, it has happened time and time again. She doesn’t talk, she doesn’t celebrate with those who “give” to her. She doesn’t have the ability to pinky swear with a person, so she doesn’t exist. She doesn’t matter because she can’t say “Wow”, or “how cool” or “thank you”. But I am here to tell you, it’s not always about the person with the disability, but rather about the family. All we want to know is that YOU think she’s important, as important as the other children with disabilities. She may not seem excited, she may not say your name and thank you out loud, she may not even look at the camera when you have a photo op for the paper, but she and her family knows. Don’t leave them out because they can’t talk, they can’t say “thank you” and they can’t say “He gave me… and he’s the best”. Do for them as you do for others because it’s the right thing to do, and it matters to the family.
This is a story for all to know and remember when you come across a family with a child (adult or otherwise) who have severe disabilities. Just remember, whether the child is able to react or respond, the family knows the difference.