Essay & article from Elizabeth Aquino
My daughter Sophie is sixteen years old and has had epilepsy since she was diagnosed at three months of age. Her seizures are refractory despite nearly twenty different medications, the ketogenic diet and many alternative and integretive therapies, and she is profoundly developmentally disabled as a result. She is non-verbal, and over the years we have tried many different forms of communication in an attempt to empower her to express herself and her needs. This has been a long and frustrating, often heart-breaking process, mainly because it is through speech and language that we define ourselves and other people. Both of Sophie’s younger brothers have witnessed thousands of her seizures and hate them, but they most often wish on birthday candles that she would talk. They have thrown coins into fountains, blown dandelions and wished and prayed that their sister would talk.
Last year, we had the great good fortune of receiving the services of a speech pathologist here in Los Angeles who specializes in augmentive communication devices. We had tried many of the voice output devices over the years, the Big Macs, the switches, the cumbersome plastic devices that broke quickly or ran out of batteries even more quickly, and nothing ever really worked for Sophie in a way that made us feel confident. There was little to no follow-up or consistency in the schools she attended and a shortage of qualified speech therapists, so when we received private funding, we jumped on it. The new speech therapist recommended the iPad for Sophie and some of its simplest programs to start.
Sophie has been working and playing with her iPad for nearly a year, now, and the going is rough and often inconsistent, but there are times when it all bursts forth, when those neurons seem to really connect and don’t spark and combust but rather hum with illumination. Several weeks ago was one of those days when Sophie got home from her first day of school and collapsed onto her bed. Her younger brother Oliver, aged ten, lay across the foot of her bed with all his papers from his first day of school, chattering to me about what he did and what they were going to be doing. When he stopped talking for a moment, I wondered aloud what Sophie’s day might have been like and then got up to get her iPad to find out. Sometimes, when her aide remembers, she’ll record Sophie’s “day” into the iPad so that Sophie can “tell” me. That day, probably because of the chaos of the first day of school, she did not, so I went to the YES/NO screen.
The YES NO screen is pictured above: when you swipe or tap the YES, you hear YES, and when you swipe or tap the No, you hear NO.
Well, that day Sophie and I had a real conversation, a conversation that inspired my son to stop chattering, look over at us with amazement and yell, “Sophie, you’re on fire!”
Here’s a bit of our conversation:
Me: Sophie, did you have a good day at school today?
Me: Did you see your friends?
Me: Was it hot today?
Me: Is Henry in the room right now?
This was when Oliver first looked up and stared at us. Henry is my other son, and he was in his own bedroom, doing his homework.
Me: Sophie, is Valentine a cat? (Valentine is our pet poodle)
Oliver’s mouth was literally hanging open at this point, and I admit to feeling shaken. This sort of clarity was not common; frankly, it was nearly unbelievable.
Me: Sophie, are you a smart girl?
That’s when all the Sophie rocks! sounded and even some tears fell.
What happens when you see people like Sophie communicating like this, struggling to communicate, to express their wants and needs and answers to questions, is a profound alteration in one’s psyche. It’s about nothing less than what it means to be human.
Invitation to webinar:
“Using Technology to Communicate with Your Developmentally Disabled Child.”
I am Elizabeth Aquino, a writer and mother living in Los Angeles with my husband and three children. My oldest, Sophie, developed a rare form of epilepsy when she was three months old, and despite many medications and treatments for her seizures, we have little to no control of them, and she is severely disabled as a result. Sophie is non-verbal, and one of the most difficult things her two younger brothers, father and I have found in our life with her is helping her to communicate and be empowered. As part of my work with Project Access and The Epilepsy Foundation of America, I helped to produce a webinar called “Using Technology to Communicate with Your Developmentally Disabled Child.” My colleague, Jennifer Bertram and I share our personal stories and successess with our featured speaker, Cindy Cottier, who provides an in-depth view of various communication tools and explains how the iPad, in particular, is used as a communication tool for children and youth with epilepsy and other developmental disabilities. There are wonderful resource pages and tips on portability and hardware, too.
We invite you to listen to the webinar and then join us in a live question and answer session on February 14th.
You can listen to the pre-recorded webinar by clicking this link (no registration is required): http://connect.epilepsyfoundation.org/p32641212/
Next, join us for the live Question and Answer event where our three speakers will be available to take your questions and expound upon topics discussed during the pre-recorded webinar.
Register for the Live Q & A here: http://ncpawebinar2.eventbrite.com/
I look forward to meeting you and am happy to answer any questions. I can be reached at firstname.lastname@example.org and blog at a moon, worn as if it had been a shell.
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