Sunday, April 5, 2009

The Signing Family

Here again I have a book in my hands that I wish I had 2 years ago. The information in this book is invaluable, and I would suggest reading it even if you are sure that you want your deaf or hard of hearing child to learn oral communication and don't want to mess with signs. It's description of the different sign systems is more in depth than anything I have found elsewhere. Let's face it finding out that your child is deaf or severely hard of hearing is overwhelming, a little like your baby being handed to you and being told that they will only speak in German, or French, or some other foreign language that you have no command of. For an extroverted chatter-head like me, despite all of John's medical problems I just kept holding on to the idea of some day he will talk to me. Some day we will talk about all the awful medical junk that he has had to endure, we'll talk about why he has to have a g-tube and other kids don't, why he needs a power chair to get around and other kids get to use their legs and run, more importantly we would talk about Jesus and how much He loves us, oh we would talk about everything. So when we found out John was deaf and that there was oral schools for the deaf where the kids learned to talk just like everyone else it was easy to live in denial of both the deafness and the need for something more/different than talking to enjoy language. Heck at that point I didn't even realize that there was a difference between language and talking.

The first few months with John's new hearing aids were heady times. He learned so fast, he went from not having a clue of what we were saying to getting everything, but still there was no understandable expression of language. When we would take his hearing aids out he would babble and carry on, but when they were in he was silent and listening. It didn't take too long for his therapist to realize that there was more than just a hearing impairment going on here. John was also apraxic, he could think of the stuff he wanted to say but couldn't make his mouth say it. John was attending an oral deaf school at that time and so introducing the first signs were both non-conformist and breathtakingly beautiful. His OT was the first to try signs with John, thinking that he would have a very hard time both understanding the concept of signs and making them with his impaired fine motor skills she came to the house with 5 little plastic animals and 5 signs for them and an hour to work on it. Five minutes after she was here she was out of animals and signs and John was enthusiastically signing their names over and over again. We moved on to more signs, 'more', 'help', 'want', 'love you' and many others over the course of the hour and consequently through the ensuing year at oral deaf school. At the school we had the most amazing therapist, she was intent on communicating with John through whatever means that he could access and so readily switched over to signs. He was getting them, and getting them fast and he was so much happier, so much less frustrated, and so were we.

We have left the oral deaf school behind and with it our delusions have been slowly wiped away too. We have realized that with his hearing aids John hears well, but not well enough to catch everything that is said, he really needs us to sign to him while we speak, and even though he does occasionally say 'mom' or 'dad' or even 'dog' we have left his speaking in God's hands because it seems that only through some divine miracle will we hear John talk with his mouth. His hands are another issue, there we are learning to sign faster and more consistently and trying our best to surround John with complete communication, both talking and signing. The more we do this the more we find that John is signing to us. He still is mostly telling us what he needs and wants, but he is getting more and more into telling us what he sees. We have an excellent OT who is working to strengthen John's hands so that his signing is clearer and we also have a MiniMo a talking device. We are hoping to teach John to communicate in several ways, we would like him to be fluent in sign to the extent that his muscles will allow him to be, we would like for him to be able to use his talker, as we call it, to communicate with those who don't sign, and we would like to teach him to use a keyboard so that he can use a talker that lets him be in complete control but also so that he can text and email and maybe even keep a blog of his own some day.

John is still not a chatter head, an extrovert yes, chatter head not so much, at least not yet. We keep working on it. He's so very smart, he's a problem solver to the nth degree and we've never seen him really want to learn something that he couldn't master, even at 5, well except for talking, but then somethings are out of his control and ours. I will post a lot more here as we go along, both with teaching John to communicate more through sign and with his talker and through the whole learning to read process. For today I just had to share this book The Signing Family, if your child or the child of someone that you know has been diagnosed with a hearing impairment, get the book, read it and Literacy and Your Deaf Child too, I wish that we had them on the day that John was diagnosed, I can't change that now, but please, even if you don't think you want to even consider sign just read these, whether you do sign with your child or not, at least you will be fully informed. As the hearing parent of a deaf child I won't kid you, this is no easy road to walk, and it's certainly not an easy decision to make, but you must make a decision about your child's mode of communication, don't default into what looks easy and don't make a decision until you are fully informed.

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