Friday, August 24, 2007

Language of Choice

For the past four years, teachers and administrators at Ashley’s schools have pushed her to use an augmentative communication device. One of her speech therapists at our local children’s hospital even agreed with that approach, and suggested we get a speech generating device for home. So I did. I made sure we got the same device with the same software that the school has tried to teach Ashley to use, and the school staff, the speech therapist and I all sat down and decided on which symbols to use on the device. And for four years, Ashley has rejected the device.

The device we tried was big and unwieldy, about the size of a computer keyboard. But, we also tried smaller devices, devices Ashley could wear with a shoulder strap, or one she could put in her pocket. None were welcomed by Ashley and none were used. I’ve finally realized that Ashley was trying to tell us something these past four years, and I have finally gotten the message – she prefers sign language as her means of communication.

Although I have fought with my school district to always have someone who uses sign language available to Ashley in the classroom, that someone has frequently not been provided. So it makes sense that if the school could get Ashley to use the speech device, they would save themselves the cost of an experienced signing staff person. Sorry, but Ashley has made clear her feelings about that. So dare I say it – we don’t want that aug comm service that you, school district, are offering.

I’m sorry that it took me so long to accept Ashley’s wishes in this matter. As a parent of a child with significant disabilities, I want to always make sure that I provide any option I can that might make her life easier. What I wasn’t doing, however, was viewing her life from her perspective. Yes, it makes it easier for others if Ashley uses a speech generating device, but it makes it harder for her. With sign language, as with a non-deaf person’s voice, Ashley always has her communication at hand (excuse the pun). She doesn’t have to worry about replacing batteries or making sure she has the appropriate sheet of pictures loaded or whether she can even find her device. Her life is much easier if she doesn’t have to carry a keyboard-sized electronic device every where she goes.

So, my sweet Ashley, like I’ve always said, you are perfect in every way. Talking with your hands makes you even more special in my eyes. I do not view that as a disability, just a difference. It is not your responsibility to make sure you are taught appropriately by people who understand and speak your language – it is the school’s responsibility. Today and every day in your future, we will celebrate the beauty of your language of choice, and I’m sorry it took me so long to figure this out.

1 comment:

Anonymous said...

My hearing impaired child doesn't want a cochlear implant, preferring instead to use Cued Speech. You wouldn't believe how many people want me to just put my foot down and force BRAIN SURGERY on the child. "cause, you know, it's easier on them.