Monday, January 10, 2011

Explaining a bit of where Nik is

Okay, I've had a few people ask me why Nik is  8yo and in first grade.  I'm going to try to explain all this as best as I can.  So please bare w/ me.  We adopted Nik at 4yo(literally just turned 4 when we were there) from Russia.  They had NO IDEA he was deaf, let alone had major vision issues.  We got him tested right away.  Appointments are usually months out so I guesstimated when he'd be home & made the appointment that way.  Plus, Alyona's situation they were not sure was life or death so that had her at cardiology the day after we came home.  Anyhow, got tested.  Got second opinions & even had Duke tell me "well, he just has a vanilla hearing loss."  No big deal.  URGHH!!!  Went back to UNC and they said well, we'll do an ABR but don't expect to find anything.  Well, they did.  AN(auditory neuropathy).  Tricky dx.  Sometimes they will booth test fine and the next time these kids can come in and test severe to profound.  Yep, all over the map.  Now, UNC kept pushing us to do auditory verbal and whatever we do, don't sign w/ him.  We really were pushed and pushed this theory.  I did not agree and kept signing to him against their wishes as professionals.  I didn't care at the time, I was his mother.  Plain and simple. 

After months of explaining to them the hearing aids weren't working, we finally got the go ahead for one side to be implanted.  Now, keep in mind, we were even being accused of NOT putting the HA on him.  He'd take them off.  He didn't want them.  Found out later from other AN adults & older kids is all the HA do is turn up the noise & it hurts.  Umm, no wonder he really didn't care for the things.  URGHH!!!  Auditory Neuropathy is tricky in that the kids hear sound differently each and every single time.  Try learning the sound for 'b' if you hear it differently each time.  Hard, near impossible.  Long story short, the implants changed this for him. Dramatically changed it. 

While all this was happening, I was unable to get him in any early intervention program here as they end at age 3.  Could not get him in kindergarten at age five as they changed the start date for birthdays.  He missed it by a day or two!  No kidding.  Yes, I fought it.  His birthday is October 3rd btw.  So, he had to wait till kindergarten to go to school.  Started that at age 6yo.  Then, we fought all year to get him an interpreter.  Finally able to get one in....May.  So, w/out understanding a thing all year and no interpreter, we decided to hold him back & start fresh w/ an interpreter the following year.  So, he repeated kindergarten.  He started 1st grade this year at 7yo, & turned 8yo in October.  He's in a regular setting w/ pull out help.  Speech therapy.  We cut back his HI class for many reasons that I will not discuss on here.  He's better off w/out it, trust me.  So, that is why he's 8yo and in 1st grade. 

We pushed and pushed for implants in the beginning.  Talked to the head researcher in the field of AN.  He agreed it would be best.  UNC was reluctant to implant and had to follow protocol.  So many months of testing and months of trying HA.  Now, I can understand it when you have an infant but at the time, we had a 4.5yo w/ NO previous interventions or language.  We knew we were running out of time then.  Past is past. Can't change it.  So, have to deal w/ the here and now.  Trouble is, he is extremely behind in any type of language.  Frustrating for sure.  We feel his best option at this time is total communication.  Now, we can ask Nik some questions verbally and he can answer us yes or no.  Some, we ask in sign.  Working on things.  Someone emailed me a system they use for their deaf child.  Never knew about it before so am glad I posted something about me struggling w/ this decision.  I just have this gut feeling they are giving him more credit for stuff than what he's doing.  I need an accurate account of his learning so that I can make accomadations when necessary.  They have done this w/ my other kids as well so truly, I'm not surprised.  Maybe I'm reading too much into it, I don't know.  Just know what I see here and find it hard to believe they see something totally different.  Anyhow, keep you posted.  He's definitely a very smart kid but w/out language, he won't get far.  Whether it's ASL or verbal.  He needs all the communication he can get.   Any more suggestions, please don't hesitate to say.  And please, if you feel we are doing something not right, let me know that too.  I can take it.   Seriously, this is our first deaf child and it's new uncharted territory for us.  We are learning as we go.  Just as Irina was our first FAS child, I know what I'm doing w/ the rest of them now.  In the beginning though, had no idea.  Had to learn from other parents who had been there.  So, now, I need input from others to gage what I'm doing for Nik.  If I can do more, I definitely will.  As a parent, there is always room for improvement.  Thanks.


  1. Ok, so the first thing I would do is get his language assessed by someone who can test him in spoken language and someone else who can do it in ASL. It would be best if it is someone who works with deaf kids and knows how to test them AND has never worked with your sone before. That way they won't make assumptions about him, it will be straight testing.

    Then, you will be able to figure out how far behind he is. If he is testing within 2 years, it is probably "safe" to mainstream him, if not, he needs a teacher of the deaf full time.

    Again, it is impossible for him to learn to read without having the language of around a 5 year old (that is what the TODs have told me).

  2. Good idea about giving him two tests in each language
    Whichever is his strongest point probably the direction he should be going. Meaning focus more on that language (dont quit the other language , just use it sparely) to give him any language and then use it to work with the other language.

    Of course make sure the sign languge is the same sign he is using..if it is SEE he probably will not do good on a test in ASL .although if he is signing any manual coded English sign language, he probably do better in ASL as ASL is a visual concept type of language which he probably already a visual learner due to years of little hearing. If a child have trouble with English in spoken and written, he will have trouble signing in English as well. They are basically the same thing.

  3. It's possible the school for the deaf or a local teacher of the deaf would be aware of when/how/where to get his ASL language skills tested. The deaf schools near me (as well as early intervention) have a standard test/assessment that they use that has been adapted for deaf children. I know there are several out there, so it's possible that your school district or the deaf school would have access to one and access to someone who can give the assessment.

    I agree with Miss Kat's Mom in her prior post that someone cannot feasibly learn language through an interpreter. They need consistent exposure to fluent language models and chances to use language. In the same way, when developing literacy and learning to read it would be ideal for him to have exposure to fluent Deaf readers and ASL users as well as being taught/having the chance to practice reading and interpretation skills.

    I disagree that signing in English word order is the same as English itself. If you look at SEE, it really is a bastardization (no insult intended) of both ASL and English and often when someone is using SEE they are dropping and changing signs so it is not a fluent and clear representation of English. Also, as I said before if someone is just recognizing words on a page and signing them in English word order, it is not developing or showing comprehension and interpretation skills.

    I also disagree that you should drop or use one language sparingly. If the goal is to become bilingual, there needs to be exposure to both languages as well as bridging strategies between the two.

    It is a tough thing to navigate through public schools, especially if you live far from a deaf school where there may not be much for services or other d/Deaf children and adults. Is there a teacher of the deaf available? Deaf mentors? Those may be things that you can look into. Be sure to request those things and have them documented on his IEP so that the school is obligated to provide them.

  4. Adding one more thing - you mentioned camps. I know Camp Mark 7 in New York, Lions Camp Merrick in MD. I believe Camp Mark 7 has a family camp, not sure about Lions Camp Merrick. The Clerc Center publishes a list of camps for deaf kids each year and you can also do some google searches. Technically Nik is old enough for some of the sleep away camps out there, if you think that would be something he'd enjoy. It could cause some growth in his language as well. There are others scattered about as well, and sometimes schools for the deaf have family weekends and family camps that you could look into.