Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Saturday, April 14, 2012


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.

1 comment:

Difference2This1 said...

Is anyone mentioning apraxia? There's a helpful yahoo group of parents that speak highly about the impact of the Omega's on speech for their kids. Whether one/both of mine have it, I have found it worth my time to skim through it here and there to pick up new ideas. And as I have written- the Omega's seemed to jumpstart quite a bit with both boys, esp. Nathan's communication. Blessings, Jennifer