Monday, September 5, 2011

Need advice-- drop ASL???

Okay, so this post will cause a ton of opinions I'm sure.  This post as you have guessed by now is about Nik.  A brief background for those who don't know so that you can form a better opinion on what my options may be.  We were told Nik was mute due to trauma.  Umm, NO.  His records in Russia were completely falsified.  Not kidding.  The shot records had dates of shots administered before he was even born!  He is not mute.  They tried to convince us at the orphanage he could talk.  I guess they thought we wouldn't take him if we knew the truth.  Far from it.  From the moment I saw his picture, I knew he was our son. 

Anyhow, long story short, he had auditory neuropathy.  Crazy disorder for sure.  Some days he would test w/ a moderate loss, some days a profound loss.  One time, a mild loss.  Just never knew.  AN is like that.  After talking to the experts, best course of action was to implant him.  I mean really, how would you like to listen to "television snow" every single day, every hour.  That's what it sounded like to him.  Horrible.  Here's  a site that explains Auditory neuropathy.  There are a few sites out there that show exactly what it sounds like to the kids.  It's terrible & honestly, I would have lost my mind listening to that.  don't know how my son lived that many years with it.

Long story short, got him implanted w/ first implant at the age of 6.  Earlier implanted the better.  Our son had NO communication whatsoever in Russia.  NONE.  No ASL, no Russian, no gestures, nothing.  First four years of his life.  To bridge some communication, we learned basic ASL to go get him & bring him home.  We were told sternly by the audiological team to NOT sign w/ him at all.  In fact, since they were not going to allow him sign, that is the whole reason we did not put him in a program at CASTLE designed for kids w/ hearing loss.  It was a very, very difficult choice but in hindsight, the correct one for sure.  Nik still needed attachment & to do this, he most certainly needed communication, even if just basic sign.  So, that's what we did.

Nik was doing so well w/ the implant, he got his second one last year at age 8yo.  Very noticeable difference. The first implant is always impressive.  He'd get so excited and sign to me "I can hear that!"  He'd jump up and down.  Second one you can tell he was a little confused in the beginning b/c more sound was indeed coming in.  But, once he got used to it, he took off.  Did not want to take those implants off for anything.  He told me he loved to hear.  Great!  Right decision.  Now, next issue was obviously speech.

Nik has always received speech at school and at home.  Now, he's getting it at home 3X a week and I work w/him daily.  Our therapists is doing AV therapy and is interested in us possibly dropping the sign all together.  Kind of immersing him in it.  I'm not sure this is the right approach. I see the benefits to it.  Will Nik ever talk?  No one knows for sure.  I'd love for him to have a back up just in case.  Many learn two languages at once.  But, is this the same thing?

See, Nik seemed to get lazy w/ language over the past few months.  Not using his voice OR sign.  Just pointing and making sounds.  We have made him say what he wants now.  I have told him he MUST use either sign or his voice.  He told me he doesn't know how and then smirks about it.  URGHH!!!!  He's definitely not stupid and knows exactly what he's doing.  We don't let him get away w/ it but I know other places he does.  Took them months at school to realize he actually could tie his shoes.  The kid had the teachers doing it by pointing to the shoes and grunting.  URGHH!!!  I yelled at him the day I found that out.  I was livid.  Told him he does it again, he's in serious trouble.  Nik is smart.  Nik does have AN and wears implants.  He can't speak but is definitely getting letter sounds down now.  He doesn't sign much either.  Nik also has FASD remember so we have other issues that go on.  Not to mention the ADHD.  So, I need to figure out what would be best for him in the long and short run.  Would love to hear from others.  Nik is SO smart that I don't want to jeopardize any chances he has for future academic success.  Trying to balance it all and do what is right by him and for him.  So,any thoughts on dropping the ASL as was suggested?  For now, we still continue to sign with him.  That is the gist of all this.  Many more details but you get the idea I'm sure.  Thanks in advance for the opinions.  Wow, 4 posts in one day & I answered most old emails.  I'm jammin'!  Now, if I can get them to bed on time, I consider that a successful day.


  1. Hi again,

    I posted on your previous post that if ASL has been his primary language it would be detrimental to drop it, and I wouldn't do it.

    Basically - just because he is hearing things doesn't mean it holds meaning for him or that it is fully accessible to him all the time. Dropping the primary language he's been using will mean "starting from scratch" (or thereabouts) with spoken language which would be a major setback.

    As for refusing to talk or sign - it's probably just a stage. 8 year olds can be interesting. I would keep expecting him to talk or sign.

    Is there any kind of ASL support or Deaf adults/kids in your area? I think it's important that he has exposure to Deaf adults and kids not only for language exposure but also for role models/recognizing that he's not the only one.

    Of course you can continue the spoken English services. You can also use one language to bridge/benefit the other.

  2. Maybe he feel he can't express himself in signing as well as he like, It's easuer to go back to pointing and gesturing if YOU are not fluent in ASL (that is, you are learning along with him)... he will need a role model who are fluent in ASL and so do you. Other than that, you are fluent in English so you should stick with that until you get an hang of ASL

  3. Have you considered Cued Speech? It's a way to see the language used in the home and there have been kids with AN who's had success with cueing. It's an audiovisual way of reinforcing the use of the implants and emphasizes lipreading for more closure strategies. I know the AV folks will resist cueing, but with AN it might be what Nik needs to gain "full access" to the spoken language environment we all live in. He doesn't necessarily have to cue expressively, but can cue as a self corrective mechanism for articulation and language production. As a teacher of the deaf, I've seen positive outcomes for kids with AN who are receptive to cueing. You still get to express yourself "orally" with the cues. As for the ASL he could continue to communicate with those who express themselves through sign. Barbara Lee would be a great resource to start with.

  4. Many people may disagree with me, but I think you need to use MORE ASL. The fact is, (and you can ask your AVT, and she will agree, because all the studies say it) the majority of kids implanted after age 3 or 4 will never catch up to their hearing peers. He can catch up in language, but it will need to be a visual language. So, unless he is already showing that he will be one of the few who will close the gap (like that he already has the language of a 6 year old) then he needs LANGUAGE, and the language that he can fully access and become fluent in is ASL.