Wednesday, August 13, 2014

Why Sign Language Wasn't Good Enough

I come across a lot of parents of non-verbal or minimally verbal children now who are considering using Sign Language as their main form of AAC. I have a lot to tell these parents, more than I can tell them in a few sentences in a forum or a private message. I decided a blog post was the best place to talk about my personal experience with Sign Language, and why, after almost a year of signing, we decided to give it up for good. I hope that by telling you what Sign Language was to me, as a parent of a child with complex communication issues, I can help you to parse out what it will (or won't) be for you. 

At 16 months we brought Elanor to Early Intervention. She couldn't walk and she couldn't talk but somehow she still wasn't behind enough to get help. "You should try signing with her," they said, "teach her to sign 'more'." So I did, and I still consider that sweet little "more" sign to be her real first word. I remember sitting with her on the kitchen floor with a stack of teddy grahams asking "more cookie?" over and over again until I finally got my answer. It was an amazing moment for both of us, for which I am incredibly grateful. Who doesn't cherish their child's first word?

I am grateful to signing for other reasons, as well. It was through signing that Elanor first asked us to watch Blue’s Clues. Her first “dog” and “cat” signs hinted at her intense love for animals. I’m glad to have had an opportunity to have my 19 month old ask me very earnestly for cookies at 7 o’clock in the morning. I know not everyone is so lucky.

What we also gained from ASL was an early understanding of Elanor’s capability. Between 16 and 17 months Elanor picked up well over 100 signs. She showed me that she knew her colors and that she could make sentences. She could learn new words after only seeing them once in conversation. We learned that she was at least as capable of learning and communicating as an average neurotypical toddler. This knowledge is invaluable to the parent of a non-verbal child. Of course we are told to presume competence, but actually seeing that competence is what we long for more than anything. Signing gave us that.

There were many things that signing couldn’t give us, though. This became more obvious as time went on. Elanor still cannot count in ASL. She cannot tell you her ABC'S, although I know she knows them. She may try to tell you she "wants" something, but she is unable to make the sign for "want." A stranger wouldn't understand her sign for "horse," or "orange", or "eat." A stranger (who knew how to sign...a rare stranger indeed) would not understand almost anything she signs. Her difficulty in signing was one of the first, most obvious indications that she had a problem planning movements in places other than her mouth. Now this difficulty is more obvious and as I sit watching her struggle, and ultimately fail, to put on her socks I know that the nuanced movement required to sign fluently will likely never be possible for her. And yet this was hardly the biggest problem we faced when it came to Sign Language.

This may seem incredibly selfish, but I think as the parent of a special needs child I am entitled to be selfish sometimes. The biggest problem that I had with ASL was the pressure that it put on me.

As I said earlier, in the four weeks between 16 and 17 months Elanor learned over 100 signs.

Let's restate that.

In the four weeks between 16 and 17 months I taught Elanor over 100 signs.

Let's restate that one more time.

In the four weeks between 16 and 17 months I learned considerably more than 100 signs. 

I had to. I was her only source of words. It was an incredibly stressful time for me. Most of the almost one full year we relied on signing was incredibly stressful for me. To put it in perspective, let's say that your child, for whatever reason, cannot speak English. You are told that the only way they will ever be able to communicate is in Italian. Okay great, teach them Italian then! Go! Wait? You don't know Italian? Okay, here's a list of videos and books that you can use. No classes though. No one to teach your child directly. Nope, this is all on you. 

Let's take this Italian analogy even further. Okay, so now spend day and night learning Italian in order to teach it to your child. Your child has picked up quite a bit of Italian from you at this point (good for you!) and you're out in the world, in public, say at a restaurant. The waiter asks your child what they want to eat and they answer in, you guessed it, Italian. Now you have to translate, and you will always have to translate. Anywhere you go, always. So you find that what you've done is taught your child a way to communicate with you and only you, and really, doesn't that kind of suck for both of you? Yes, yes it does. 

The communication device is different though. It speaks English. I may have to spend time learning where the words are, but I already know all the grammar, and Elanor and I can find the words together. Her little fingers, although shaky, have created motor plans for these buttons and even if her movements aren't perfect, she can easily get her point across. I am confident that she could ask a stranger for a cookie if she had to, and that the stranger would understand her. The difference is night and day. 

I will always be grateful for the many things Elanor was able to tell me when sign was her only means of communication, but I imagine that if she had used her device all along she would have been able to say many more things, and to many more people. In the end, Sign Language was good, but it was not good enough. 

When you, as the parent of a non-verbal, hearing child, are looking for a communication solution I urge you to look beyond ASL and consider what else it out there. Ultimately, it will be easier on everyone.