To Sign or Not To Sign Part 1: Total Communication

June 8, 2009

By: Mark Dunning 

(NOTE: We'll get back to a review of the May 12th Conference, but these next couple of posts are needed for context)

Sorry for the long break between posts. I have a good excuse in the context of this blog: we've been away visiting an Usher specialist. To sign or not to sign, that is the question today, and it's a big one when we're talking about Usher syndrome. It's big enough that I spent nearly two weeks trying to find a way to express my opinion on the subject that wouldn't offend, well, pretty much everyone. Nothing is more polarizing in the Usher community or the Deaf community as a whole. Oh, and as always, what follows is solely my opinion on the matter and it is one that I know differs from many.

The technology today (cochlear implants, digital hearing aids, etc) can give a child with hearing loss better access to sound and spoken language than at any point in history. However, today's technology does not cure hearing loss. These children do not hear like a hearing person and they still need lots of support to succeed. But for many, it is a cure for spoken language acquisition. A child born profoundly deaf that receives a cochlear implant and the proper supports can learn to speak and understand spoken language on a par with his or her peers. This was not the case historically.

This technology combined with the vision concerns associated with Usher syndrome leads many to feel that sign language should be discouraged as a management option. I disagree for a number of reasons, but before I explain, understand that sign language can be used as a management option in a couple of different ways.

First, it can be used as part of a total communication approach to language development. In other words, it's used in conjunction with spoken language with the intention of assisting in the acquisition of spoken language. A remedial set of signs is used to supplement spoken language until a child is able to use spoken language as his or her sole means of communication. It's like training wheels for spoken language.

Sign language can also be used as the primary means of communication. We're talking American Sign Language (ASL) in this case. This is the choice of manual communication instead of spoken language, not in support of spoken language. ASL is a full on language of it's own, no different from Spanish and Italian and every bit as beautiful.

I am a big supporter of the total communication approach for children with Usher syndrome. I'll explain why in a moment. I am less a supporter of ASL for kids with Usher for the obvious reason that their sight is at risk. However, I am not in the camp that believes it should not even be discussed as a management option. It should be. I'll get in to the ASL issue in my next post, but first here are the reasons why I believe total communication should be encouraged as a management option for children with Usher.

TOTAL COMMUNICATION

Sign Language Helps with Spoken Language Acquisition.
This is a controversial way to start the argument for sign language. There are those that believe that sign language actually hinders the acquisition of spoken language. I respectfully disagree. In many cases even hearing children are able to sign before they develop the ability to speak. For children with hearing loss, it takes even longer to develop spoken language.

Most kids with Usher type 1 have severe to profound hearing loss. To acquire spoken language in these cases usually requires cochlear implants. Cochlear implants, as a general rule, are not done before 12 months of age. (The reasons are physiological. The skull is simply not developed enough in most cases.) Further, it takes another 12-18 months for a newly implanted child to adjust to this new thing called sound pouring into his or her brain. They simply can't decipher what is a word and what is, say, a dog's bark or the wind in the trees.

That means an implanted child will not be communicating effectively with spoken language until he or she is at least two years old. For children with mild to moderate hearing loss, the delay in acquiring spoken language can be shorter, but it is usually still there.

However, most kids in that situation can communicate through sign language at a pace that is on par with the spoken language development in a hearing kid. So sign language can bridge that gap. Kids can learn to sign dog and milk and mommy and hurt and happy while they are learning to understand sound.

This helps them acquire spoken language later because it gives them a reference. You don't need a dog in the room or book of dogs to teach them the English word dog. They already know the sign. It's like learning Italian for the first time. It helps if you can ask 'how do you say dog in Italian?' rather than having to present a dog and point at it.

Sign Language Can Help Address Behavior Issues
It is not uncommon for hearing children to be speaking a limited vocabulary as early as ten months of age. But as we just said, children with hearing loss often don't acquire spoken language until they are 24 months or older. So what happens to the child with hearing loss that has the intellect to communicate but not the means?

Often the result is that the child becomes frustrated and that frustration can lead to behavioral issues. The child wants a glass of water but doesn't know how to ask. He points and points and points, but mom just can't understand what he wants. Finally the child gets frustrated and starts screaming or throwing things or lashing out. It's typical behavior for a young child, but it happens more frequently in a child with limited communication skills.

Sign language can help mitigate that by giving a child the ability to communicate at a young age. Allowing a child to communicate at a level commensurate with his or her intellectual development can help eliminate that frustration and the accompanying behavioral issues.

Sign Language Gives Parents Confidence and Hope
When a child is born with hearing loss, parents are panicked. Most have never experienced deafness in their family. They don't know how to communicate with their child. They don't know how to soothe their child. They feel like failures. All their lives they've seen children being reared and somehow none of it seems to apply any longer. They lose confidence and they lose hope. Again, even with today's technology, it takes longer for children with hearing loss to acquire spoken language and every waiting second is agonizing for the parents.

My daughter has cochlear implants and speaks English. We used sign language with her until she was implanted. She rarely signs any longer, but that day when 8 month old Bella signed 'Daddy' a whole herd of elephants jumped off my back. We had been signing and signing and talking and talking, but we just couldn't tell if anything was getting through. Suddenly, I knew it was. I was going to be able to tell her I loved her and she was going to be able to tell me she loved me, too. But more importantly, all those hours of speech therapy and signing and doctors appointments were working. I could see that finally. It wasn't futile. There was hope. I could do this.

Sign Language Helps in Situations Where Current Technology is Weak
The technology today has weaknesses. No one hears well in a crowded restaurant or grade school auditorium, but it is especially difficult for kids with hearing loss. I always think of it as watching a home movie of a wedding. You know how you can hear Uncle Bob's voice right next to the camera but the people on the other side of the table seem muffled and distant? That's what it's like for a person with hearing loss in a crowded room. My daughter usually can decipher a conversation and she's great at reading lips. But we still get stuck sometimes where she just can't figure out what we are saying. It helps to be able to throw in a sign or two to help her get the context of the conversation.

The technology is also 1) expensive and 2) fragile which makes us all 3) freak out when the kids are near the pool or on the beach. So we take them off and put them in a Ziploc bag or in their case to protect them while the kids splash around. Unfortunately, pools and the beach are dangerous areas where you need to be able to communicate with your child. Being able to sign 'stop' and 'help' and 'look' and any number of other safety related terms can be vital in such situations. It's still tough to get their attention since you can't scream and get them to look, but you can at least get your point across quickly when you do. That can be the difference between and accident and a near accident.

Finally, few kids sleep with their hearing aids or implants on. That means they take them off just before they go to bed. I can't speak for everyone, but in my house that's exactly the point where my daughter starts misbehaving. She's tired but she doesn't want to go to bed. She needs to go the bathroom or find the dog or get a drink or read a book or just do one more thing, Daddy, just one more thing. Rather than have her constantly putting her implant back on, we just sign with her. It's the reason I know how to 'yell' in sign better tan to 'speak' in sign, but it really helps.

Next up: Should ASL still be discussed as an option for Usher kids.