Tuesday, June 19, 2012

What to do for Nik?

I really hate decisions.  I do.  Especially, when it comes to the kids.  Back to Nik again.  I will do a long story short here.  They want us to start AV therapy with him and cease all signing.  Their hopes are that he'll have to start to speak.  I think they are totally off base here but not saying that at the moment.  Okay, to start with, Nik's is an extremely unique case.  Extremely unique.  We have not only deafness but AN..auditory neuropathy.  Totally different ball game when dealing w/ AN.  Not only that, we also have processing issues w/ FASD and ADHD.  And did I mention the sensory integration and a few other in the laundry lists of dx's??

Anyhow, Nik's been getting speech therapy forever and a day.  Right now, they come 3X a week for 30 minutes each time.  Now, they are coming same days but adding AV therapy on top of the speech therapy for 2 of those days.  Oy!   Today he said it's long.  LOL.  I don't mind the therapy.  Not one bit.  Here's the deal though.  With true AV therapy, they want you to drop any and all sign.  Goal is to sort of "make" him talk.  I understand their total immersion technique. I get the premise behind it.  However, I just can't yet agree with it.  BTW, we've dipped into AV therapy before with Nik.  Didn't help.  And back then, we didn't sign to him.  Did it make him talk?  No.  See, lately he's been getting more comfortable trying to talk with the sign.  Before, he wouldn't even attempt to sign.  I think for Nik he has finally realized if they can't understand me, they'll understand my sign.  The past few weeks he's just boomed w/ trying to talk. AV only started 2 days ago here so that's not the reason for it.  I do think he's ready to try to talk.  However, I am not confident he'll ever have intelligible speech.  I feel he needs that back up of sign.  Total communication.  Why are AV people SO, SO against sign?  Many people talk and sign. 

Oh, AV is auditory verbal for those that don't know.  And, there is homework every night.  Now, we do work with Nik on a constant basis.  This homework thing though w/ an FAS kiddo, well it never goes over well.  I want him to talk, I do.  I just don't know if this is headed in the right direction or he'll regress.  I feel he'll regress if we take away the sign completely.  Plus, all summer he's in the pool, no implant on.  Sweating, takes the implant off.   He is still deaf w/ out those on.  What would some of you do?  He's 9yo.  Can't speak but tries really hard.  Getting a few words.  He's comfortable at where he is.  Also, Nik has other issues that we need to bear in mind.  FAS, ADHD, Sensory integration, institutional autism.  Just feeling uneasy about the AV therapy. I thought the speech therapy was going so well I just didn't want to rock the boat.  Will it help him?  Don't know.  No kid like him, I'm sure of it.  Especially, with the background in Russia.  Anyone w/ any input, I'd like to hear.  This is NOT about whether he should be verbal or not.  This is about whether we should discontinue sign while he does AV.  Gut is telling me one thing but I don't know if I'm making that decision based on my emotional involvement as a parent.  Make sense? 

7 comments:

  1. Stephanie, PLEASE don't stop signing. As I see it, you'll take away from who he is by taking HIS way of communicating away. To me signing is as much "valid" means of communication as speaking, writing, pecs-ing....whatever. Do AV if you like but let that ADD to his communication skills (as opposed to replacing a certain amount of functioning communication with a lesser amount of less functioning communication.) Communicating is about getting through to one another one way OR another (or both, of course). Besides, he's only nine, you can always try AV the "right" way when he's older.
    However - YOU know Nic and what's best him/your family/your situation.
    Much luck with decision making!
    Nellie

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  2. Stephanie,

    We will be at the reunion this weekend so both my husband and I can talk to you about this subject as it's too long to get into on here. Long story short, always always go with your gut instinct. For others reading my post, both my husband and I are deaf. :)

    Lynda

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  3. I've posted on this before. Some AV therapists will push for dropping ASL - I wouldn't. Especially since that is language and a means of communicating for him. Language communication skills in ASL can carry over to speaking/listening skills. ASL does not harm or inhibit speaking/listening skills, and a lot of research shows it can be beneficial because the child already has the concepts/language and can easily transfer it over to English.

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  4. I would go w what he feels the most comfortable with. I would not limit his ability to communicate in any way.
    This is just my opinion.
    Pat Spencer

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  5. At his age, dropping sign would be a huge mistake. The truth is, that it is incredibly unlikely that he will become 100% oral. He was simply implanted too late! And anyone who tells you otherwise is being untruthful. The stats show that kids implanted after age 4 hardly ever become oral. It's the nature of the brain. So, you can spend the next 4 years working on getting spoken language, and succeeding somewhat, but having a frustrated, angry, delayed child OR you can work on improving his listening skills the best you can BUT USE ASL AS HIS LANGUAGE! Language is way more important than talking, and right now Nik doesn't have a language. If it was me, honestly, I would drop one of those therapies (I say speech, but whichever is less useful) and instead start ASL lessons in the home. Have a Deaf adult come out and play a game with Nik and the family for an hour, read him a book or just chat. If you can't get someone in person, get a videophone or do it on Skype. The honest truth is that he is very unlikely to develop intelligible speech (beyond a few dozen well rehearsed lines) and even less unlikely to be able to understand the spoken language of others (outside of common phrases.)

    I know I am being tough, but you know it comes from love! Late implanted kids are totally different, and I don't believe your AV therapist is being honest. Ask about kids implanted this late. Ask what they truly expect for him and what they would consider "success".

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  6. Hi,
    I love reading your blog, I was not implanted until I was eight years old. I am so thankful and glad that I had a form of communication other than oralism. I grew up on cued-speech. I don't always use it, but I cannot tell you how beneficial it is to have ASL or cued speech as a back-up. When I can't wear my implant (swimming etc) I rely heavily on cued speech to communicate. I cannot tell you how much I enjoy cueing/signing to my hearing impaired friends.
    I had speech therapy 3-5 times a week when I was younger. I didn't always like it but it gave me the speech and hearing I have today. I would go with your gut, mothers know best.

    Courtney Branscome

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  7. Hi, I too enjoy your blog. I particularly enjoy hearing about Nik, Max, and their art and Max's constructions!

    I grew up across the street from Clark School for the Deaf, an all-oral boarding school, in the days before cochlear implants. Also, my father, a physics professor, had lost most of his hearing to measles at the age of eight, and our family is all about education -- many teachers, and a lot of interest in education and the science of education. (My father is hard-of-hearing, does not sign or read lips -- but has pretty severe loss even though he is able to depend on a hearing aid. This opinion comes to you from the daughter of a Hearing person.)

    So -- what we saw was that kids spent a huge chunk of their education on spoken language. If and when they showed up in the mainstream schools -- sometime in high school -- they were often something like four or five years behind their peers. Finishing high school in their twenties. After graduation, many kids turned to the Deaf community -- but then had to learn sign. Many kids never seemed to have particularly good spoken language, or real fluency in written English.

    Which means that all that effort towards spoken language sacrificed their opportunity for fluency in ANY language, and the cognitive skills that go with that, and fluency in written English. That was our impression at the time, and the recent research bears this out. Try googling on "Theory of mind deaf" to find IMO the most interesting and revealing articles on this.

    IMO, the goals for ANY kid should be communication, language skills, language-driven cognitive skills, literacy. Spoken language is great -- but it's not something everyone masters -- including many people who don't have Nik's challenges. And true language and the cognitive skills that go with that are things for which there are critical periods -- the younger they're learned, the better off you are.

    Your gut is telling you that Nik is better off learning ASL. Your gut is right. I don't know if you CAN get the speech folks to focus on ASL and real ASL fluency for Nik, but IMO, if you're going to go with all-anything, go with the ASL, or ASL+speech -- but emphasize the ASL, especially as a true language. It's the language syntax and complexity that leads to cognitive and reading skills. Try searching on "Bi-Bi education".

    That is to say, Nik is at this point very late in language acquisition. He's shown ability to learn sign, and struggles a great deal with spoken language. Use his strength. Sacrificing this remaining period of brain plasticity to emphasize speech, not language, is plain wasteful, and that's what the AV folks are proposing. IMO. I wouldn't be so blunt if I didn't think I was supporting your own gut feeling on this.

    Well, and because I hope you can use it to tell them, or someone, what's what, and get what Nik really needs from them. Can't send you baskets of food, can offer up a tiny contribution from a science nerd.

    A few relevant articles -- the first has some discussion on language and development of cognitive skills which I actually found myself thinking might apply to ALL your FAS kids, not just Nik:

    http://www.asha.org/Publications/leader/2002/021203/f021203.htm
    http://www.rit.edu/research/biox_story.php?id=35
    http://onlinelibrary.wiley.com/doi/10.1111/j.1469-7610.2004.t01-1-00302.x/abstract?deniedAccessCustomisedMessage=&userIsAuthenticated=false

    (I should say, I also tried and failed to find research evidence that oral-only teaches speech better than sign+speech teaching. There may be something I didn't find, but if there was, you'd think it would get posted to the extremely heated discussion boards on the topic of deaf education.)

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