The Power of "Yes"

Tonight I was reading Maternal Insticts: Flying by the Seat of My Pants which is one of my favorite blogs by a parent of a child with disabilities and Niksmom's recounting of Nik learning how to sign "yes" and thus answer questions about pain brought back one of my favorite teacher memories.

About 10 years ago I taught a very small intensive special needs class in an urban elementary school. One of my students, a 10 year old boy, came to me with a history of sleeping all day, every day, at school and an estimated "developmental age" of six months. This little boy came from a Spanish speaking home and lived in the housing projects in the city. He had a severe seizure disorder, cerebral palsy, used a wheelchair and was non-verbal. As we settled into a routine in our classroom that September and October I noticed that he often laughed or responded in an obvious way to humor, especially joke questions like, "Is you mother's name Tallulah?" (It wasn't.)

One day we were in that nebulous part of the afternoon when everyone has their coats on and their bags packed, but the buses have not arrived yet. Jokingly I asked my student if he could open his mouth to catch a fly in the room. He did. I stifled my gasp and asked him if he could look up. He did. I repeated my question and he again looked up, laughing now. I went into the hallway and grabbed the first person I could find, the OT, and asked her to watch us. I again requested my student look up. He did and then he laughed. I asked him if there was anything else he could do. He stuck his tongue out just past his lips and grinned at me.

The next day I asked my student if we could pretend looking up meant "yes". He looked up. I proceeded to ask him a variety of questions and he accurately responded to all of them using his new method of raising his eyes to say "yes". Actually he missed one question, "Is your mother's name Tallulah?" (Which he thought was the best joke ever.)

Over the next few weeks we worked to refine this method of answering "yes" and I was hesitant to call his mother (who was not named Tallulah) in for a meeting, in case he wasn't ready to carry his new communication over to his home life. One morning the phone rang and his mother (through a translator) asked why her son was rolling his eyes at her all the time. We knew we had accomplished generalization and filled the mom in on what all the eye raising meant. She was excited, but dubious.

A few weeks after that we received another early morning phone call from my student's mother. She was crying and before long the translator was crying as well. The mom was explaining, "Last night my baby was crying. He was sick and I didn't know what was wrong. I started asking him questions. Do your toes hurt? Do your legs hurt? Does your bottom hurt? Does your stomach hurt? When I asked about his stomach he raised his eyes and stopped crying so hard. I gave him some stomach medicine in his tube and he was better. He stopped crying. This is the first time I could help my son because he could tell me what was wrong. Thank you so much. Thank you for making it so my son can tell me what he needs from me."

Once we heard what the conversation was about we were all crying. A few months later my student added a slight head shake for "no". Then he learned how to use partner assisted scanning in a more formal way and then to use simple scanning software with a switch to make choices and spell out messages. All of this from an afternoon of joking around. His picture still hangs on my wall (taken with his hero Rick Hoyt) to remind me of the power of "yes".

My Voice is My Power: Part Six, A Mother's Story

This guest blog entry has been circling the special education/disability list servs and is a perfect addition to the "My Voice is My Power" series of entries.

The guest blogger is Denise, mom to Brandon who is a nineteen year old young man who speaks with an alternative communication device. When Denise and I corresponded about posting the story as part of the "My Voice is My Power" series she told me, "Originally when this was sent it was only sent to those who know me and my son and my family. I did not include his age, but I think it adds importance to the story because it shows its never too late to have that moment. It was the singles best moment of my life as his mom."

The Story:

After finishing dinner with Allen and Brandon, it was just B and I left sitting at the kitchen table. I was so tired (after all it was 7pm!) that I put my head down on the arm of his wheelchair. I positioned his hand and fingers on my head and hair so he would have that “sensory” experience of feeling my hair as his fingers would move (and I would get a gentle head massage!). The armrest was actually quite soft and comfortable and we stayed in silence like this for at least five minutes. (I probably even dozed off!)

All of a sudden I heard a voice…Brandon’s digitized voice from his Dynavox.

“I LOVE YOU.”

I looked up at him stunned, and as the tears formed in my eyes (as they are as I again retell the story), he just started smiling and laughing. Brandon knew what my reaction was going to be to what he said, even before he saw the look on my face. He knew how happy he made me with those three words. He knew that what he had said was going to make me cry “happy tears”. He thinks it is funny that I cry “happy tears”.

So together we shared our unbelievable happiness…me with my tears because my son had given me this amazing moment…and B with his laughter and smiles because he knew that he had given me this moment. A moment that will last forever.

So you see...no matter the circumstances...you never really know what can make someone happy, nor in what form that happiness will manifest itself.

It’s different for everyone but should be experienced and shared by all.

I hope that my story made you happy whether it stays with you for a moment or a lifetime...

Whether you smiled and laughed, or had tears in your eyes…or both...I hope it touched your heart...

His voice is his power!

Here is the video that inspired the "My Voice is My Power" series. It is worth a watch... even if oyu ahve already seen it.

My Voice is My Power (part four)

Today I visited again with my former student (the one I wrote about in the second My Voice is My Power follow up). This time he had his AAC device. What a difference it made!

When I first arrived he used his device to tell me that he was mad at me because he doesn't like change. I realized that this was because I was supposed to spend the entire week with him, but instead was only with him today (see previous entry about my going to NY). So we talked about it and he was fine after a few minutes. Without his communication device it would have taken us hours to work this out.

We visited and he told me all about his week and his new school using his ChatPC. Then he went to a page of all of his teachers and friends from when he was in my class and he asked about each of them one by one. After all the updates he decided he wanted to go visit a classmate who was in my class with him and then happened to move to the same residential school he is at now.

The entire drive there he talked to me with his device. He told me about the music he has been listening to (Bruce Springsteen), his favorite class (horticulture) and his favorite friends and staff members at school. It was great. Then we called his old (as in former) speech therapist and he used his ChatPC to talk to her on speaker phone. On the way to visit his classmate he decided he wanted to go to McDonald's where, without help, he ordered his fish sandwich and a Coke.

We then visited his friend, who he nagged about her not using her ChatPC (it wasn't charged) and then he gave her a foot rub. (I kid you not.)

Next we went to Bob's Discount Furniture to sit in the massage chairs and try out the massage Bob-o-pedic Craftmatic style bed. He used his device while we there to chat with my father (who is a salesman there). He told my dad that I am mean, messy and that the side view mirror is broken on my car. My dad told him that they were both saying all the same things about me (thanks soooo much, dad). Then my student decided to look for Bob, but since Bob doesn't work in that store he settled for a Bob's Discount Furniture tee shirt, even using his device to say what size he wanted.

Then my dad asked us to do him a favor, could we go to his house, find his cell phone and bring it to him? We said yes and were off on an adventure to look for the cell phone. We found it and brought it back to the store. The entire time we were conversing with the help of the ChatPC.

It was such a different day today versus the day we spent together in April when he did not have his ChatPC. His voice is his power.

See the My Voice is My Power video.