Speech

I'm frustrated.

How's that for an introductory sentence?

I know lots of kids with DS who were adopted older who are talking. Not only that, but I was with one of them when he was adopted at age 7, and he was saying many words in English in the first week he was with his new mom (as I tagged along). I see videos of other kids at a mere couple of months home, and they're talking. Sentences.

Axel doesn't talk. Well, he has a some words he can say but only if they're in isolation and he rarely chooses to use them. Instead we get "Axelese". I think in his head he thinks he's speaking the same language we are, but it just doesn't come out. 100 times a day he says, "Didi oo....right?" We used to answer with "Right!" That was until we realized sometimes he's asking if he could do something...that he can't...and we've just given him permission to do so! If we are frustrated, Axel has to be even moreso.

Although Axel is hearing, he goes to deaf and hard of hearing special ed. classroom where only ASL is used. The teacher, who is also deaf, does use speech with Axel also. Axel really needed this program and it has been wonderful for him. Part of Axel's language issues stem from the fact he was exposed to several different language before we got him, none of those exposures lasting long enough for him to learn the language of the setting. Because of his, Axel never developed a first language, and sadly his window for developing an intact language is closed. I have seen Axel in school and how he signs with his teachers and staff. He signs quite a lot and is figuring out the difference between deaf people and those who are hearing; how to get their attention, that they have to be looking at you to know what you're saying, etc. I am also fluent in ASL but for some reason Axel refuses to sign at home. One day over spring break he signed all day long and it was wonderful. I knew exactly what he wanted the whole day! But it was one day. Just one.

I don't know what Axel's school day will look like next year. I know that he has picked up enough sign now that he can access and interpreter at least for short periods of time. He goes to the mainstream music class and seems to do fine. His placement for this year was absolutely the right choice. I haven't second guessed myself where that's concerned. I usually have a pretty good idea what my kids need, but right now I'm pretty lost as far as what to do with Axel for next year.

And then there is Asher. He was in the same facility from the day he was born until I got custody of him. They spoke Serbian there and Asher clearly understands Serbian. When we did his assessments it was with a Serbian translator, and when he had his surgery we also had a translator. In both instances he knew what the translator was saying, even 3 months after no exposure to the language.

But still, there is no speech. I don't really expect there to be with Asher since he wasn't speaking Serbian either. He has a lot of tongue issues to overcome before there will be speech for him. He's trying though. Still, he's silent unless you're sitting face to face with him, prompting him produce some sounds. When? When will he discover he can make noise? I expect that someday he will talk, but its a very long time away.

We put Asher into a mainstream kindergarten classroom. At home there is Axel who speaks like he's from Mars and Angela who, with her hearing loss, is very difficult to understand unless you know her well. Asher needs to be around kids who are speaking English all the time. Fluent English. Clear English. He needs to see that kids talk. A lot.

I loose Asher in the house all the time. He makes NO noise. Right now there are two kids in the bedroom playing. I can hear the electronic toys going, and once in awhile Axel will repeat the name of a letter, but otherwise the house is silent. It is any mother's dream, to have a quiet house. It's not my dream.

I wonder how God decided we should parent the non-verbal kids? I know "why". Because we could give them communication in the form of sign, or electronic devices, or whatever. But why did God choose that we should have silent kids? Someday I hope to ask Him. In the meantime, we continue to do all that we can. Encourage sounds. Encourage words. Encourage communication. Encourage, encourage, encourage.

Name Signs

Oh, life is getting complicated around here. We have a BIG change coming to our lives starting on Monday the 28th. That change is going to involve me assigning name signs to several new people.

Normally, assigning name signs to hearing people is something that should only be done by deaf people. When I was an Educational ASL Interpreter, interpreting for deaf students in the classroom, this job was left to me.

There are lots of rules about assigning name signs, and it's really not something to be taken lightly. A name sign (usually) stays with you for life! I'm kind of hoping I can have an acquaintance of mine who is deaf do this task for me. If not, the task will be left for me again. Don't get me wrong, it's a fun thing to do, but it's exhausting and my brain is very much out of practice!

Having a name sign for everyone Axel has close, regular contact with is important. The most obvious is so that he can talk to me about his day. Lets say your child has just come home from school, and you find a sucker in her backpack. You don't know who put it there. You show your child, "Oh, you have a sucker in your backpack! Who gave it to you?" Hopefully, if everyone in school has name signs, your child can say, "Johnny" and "Birthday", so you can put those together to know that the little boy Johnny in your child's class had a birthday today! (of course, if your child's teacher is really on top of things, your child has a communication notebook and you'll find he or she has jotted down a quick note about the days events, including Johnny's birthday.)

The other reason, the one we prefer not to think about. Safety. Axel needs to be able to tell me both the good and the bad in his life, and this includes using people's names. In November 2007 Angela was assaulted in school. She was able to tell me the name of the person, but what if she couldn't? What if she was like Axel and unable to say anything intelligible? Name signs are CRUCIAL for a non-verbal learner.

Do you have a name sign? Does your child? Who gave it to you? If you have a child who has DS and goes to school, do the students and staff all have name signs so your child can tell you about his or her day?