The Joy of Autism: Adam Speaks
The link above is to a very moving blog post. Watching the video makes goose bumps come up on my arms. Please watch this and come back to my comments below.
Watching this clip brings up an important consideration when choosing a speech generating device. When you choose a device, consider how easy or hard it will be for your child to say what he or she wants to say on the device. My friend and colleague Jolene Hippa Martin M.A. Speech & Language Pathologist, gave a very interesting demonstration recently showing how many buttons a child would have to push to say an original sentence on various devices. When you hear a child's own words, like you do when Adam types out his own words, it makes you want to hear the real words in a child's mind. I guess, at minimum, having an easy spelling option on a device is important for children who can spell out words. When you try various devices, make sure you try to say an original sentence on the device and see how hard or easy it is. Speech Generating Devices vary greatly in relation to how easy or hard this is depending upon how they are organized. It is not the only consideration--certainly the Tango, which is not good on this consideration is by far the easiest device on which to converse in a scripted way with others and much of our daily conversation is scripted. Hi, how are you? How are the kids? The weather is nice today. Mom, she took my toy! I don't like that. Leave me alone. I love you. Goodnight. For this kind of conversation, no other device can beat the Tango. But for encouraging a child to generate an original sentence or talk about his or her real thoughts and feelings, the Tango is not the best device. It is very hard to create a really great speech generating device unless a child is blessed with the ability to spell and has a person in his life like Adam's mother who will take the time to converse this way.
A second point that this clip makes clearly is how difficult it is to create a program that fits the needs of a child like Adam. Nancy Johnston M.S., a Speech Language Pathologist who works beside me in our clinic, was struck by what Adam said and concluded that his school program was inevitably a mismatch. She noted that Adam said he was "playing phonics" and indeed he was because a child who can spell out the words that he was spelling would be "playing" if he was doing work on phonics. He is way past phonics. How can a school actually meet the needs of a five year old who writes like this child does; a child who also loves a gray day (probably visually calming), for whom noise is poison (I bet it really feels that way), and who remains unknown to most the people around him because he has so much difficulty saying the things he is really thinking about. I had the strangest feeling of disappointment in myself as I read these conversations--as though, hard as I work to meet the needs of the children I serve, I might often be entirely inadequate. I would instantly refer the children I see on to others, if I thought someone else could do better but there is no one to refer children with ASD to where I live who would, in fact, do better.
Except family--perhaps. And in a funny way, I guess I do refer children to their families. Families come in loving their child but the route to understanding autism and what it might mean in the life of a child is a long road. I feel like I walk that road with families for a little while and show them some shortcuts and also some beautiful places along the way.
Which brings me to a final point here. Read Adam's mother's comments below this video clip. She has traveled down the road of understanding Adam and her comments take me along with her in a way that I only hope I can convey a little bit to parents newly on this journey. As she sits and converses with Adam by typing back and forth, my tears well up. I am moved not just by hearing Adam's voice but by hearing their conversation. Adam has the possibility of learning his own story as he tells it to his mom. All the professionals are indeed inadequate to the needs of a child like Adam but he has someone in his life who is adequate--his mom.