Tuesday, December 13, 2011

It hurts to hear....

It hurts to hear the words your son is making NO progress.  It does.  I'm going to be very honest in this post so my emotions may get the best of me right now as I just found out and they are very raw emotions.  Nik had audiology appointments today.  Big evals and everything.  Warren just called me.  Other kids are home w/ me eating lunch at the moment.  We were told that Nik is making NO progress since being implanted.  And, one of the implants he's had 3 years now.  We are heartbroken, devastated, hurt, sad, angry, etc.  See, I've seen tremendous progress in my son.  Am I biased?  Maybe?  I don't know.  Just can't believe this right now.  Do we regret getting him implanted?  NOT ONE BIT!  He LOVES his implants.  Tells us he loves to hear & he couldn't do that before.  And, he can clearly hear us.  He does not understand all we say but can understand a lot of it b/c we say it to him verbally w/out sign and he knows it.  Common phrases for sure.  I don't know what to think.   They told us today to put him in a deaf school or cued speech program.  Helloooo.  These are the same people that told us NOT to do that years ago when we were looking into deaf schools.  We've spoken w/ many deaf adults and one thing rest assured we will never ever do is put him in a residential deaf school program.  Never.  I can get all the nasty comments about that if you'd like but I've heard too many horror stories from various people.  Now, I loved the ENCSD when we went to visit.  LOVED it.  However, we were encouraged not to do this years ago by the medical community.  And that's okay.  They were going off what they knew at the time.  Plus, too far to bus him there.  We were told even this summer to drop sign completely.  Though, we never have, we were using it less and less.

Things must change.  We have to move forward from this point but where?  We have been dying to move for years now.  Years.  We knew there was nothing in this county for our kids w/ devel. disabilities when they got older.  We knew this.  Kept making excuses not to move.  We love our home, neighbors, community.  Well, can't delay now.  There are way too many signs pointing to us to move and this is just icing on the cake.  No matter how great the loss, we will indeed have to move if humanly possible.  We have found many great places.  With services for ALL our kids, not just Nik.  However, it is a matter of selling this home.  First, it must be fixed up.  Cosmetic stuff but requires many hands.  Preferably non-FAS hands.  Those with kids w/ this disorder know exactly why I said that.  LOL.  Anyhow, this has to happen.  Warren and I will be making plans.  We had already started to before this appointment.  This will just speed it up. 

What do I tell Nik?  Not to use his voice?  Use sign?  Both?  Yes, we're going w/ both for now.  Didn't you hear him when I put the video up?  He said words. Words.  I understood them.  I wasn't signing to him behind the camera.  How can they say he's not making progress?  How?  He tries to talk.  I am so confused right now and know I need to process it all.  We want only what is best for Nik or any of our kids for that matter.  Did we do him a disservice all these years?  Irina even took ASL at school to help learn more.  We all soak up ASL every chance we get.  Just need more of it.  But how?  No classes for the whole family.  Haven't found any ASL camps for families yet.  We will be going back heavily to ASL again.  All the time.  If this is indeed the direction he's headed in life, we all want to be a part of his life for sure.  We are all now but as he ages, he will need more communication. 

This is hard.  Unexpected.  New kids, new prognosis, new dx coming for one kid, etc.  We never said it would be easy.  never.  But really today was unexpected news.  I was ready to be beaming for them to tell me just how much progress he had made.  I guess I was seeing things that weren't there?  how though?  His personal speech therapist sees progress too.  Which way to go?  So many questions.  No answers at the moment.  I wrote this all just shooting from the hip.  Whatever came to mind.  I know many may not agree.  We all have our own perspectives.  I'm NOT angry he's deaf or anything else for that matter.  Just wished we would have known a bit sooner as maybe we could have prepared better.  Trust me, we did everything known to man w/ the school systems.  Right now, we have major, major decisions to make regarding all our futures.  This will not be easy to do.  Finding balance is key.  What is a good area for one may not be for another child and we have several to consider.  For now, we will be seeking advice from others in NC.  We need to find a place where ALL of us can learn more in depth sign.  We know the basics and basic conversation but we need to really, really get in deep.  I will have a follow up post when I can think more clearly.  Sorry if this is a downer of a post.  Wasn't meant to be.  Just wanted to put on paper while it was fresh in my mind what I was feeling.  We love Nik like crazy.  And, he loves us.  But, as any parent, we want him to reach his fullest potential and grow.  Hoping we make the right decisions in the next few months for ALL our kids.  Thanks for listening.


  1. Oh boy do i know what you are talking about ..
    You need some signing time dvd's. That is what we have been using as a family. I t has helped us alot.. Oh i really know how it is to live with FAS/ children.. Boy they can break everythig in your house... Also your hearts..
    We will say a prayer for yiu all..

  2. Making no progress in that he doesn't hear well with his implants? If so have you considered out of booth MAPs? Some people find they make a huge difference. This mom has some experience of them http://texaskennys.blogspot.com/. Maybe worth a try? I hope you find the right solutions for you and your kids.

  3. I didn't see the video, where is it? My daughter was also late implanted at 5. She used ASL fluently before implantation and is now oral. I would love to talk to you and hear what the professionals are doing and what they are advising you to do.

  4. What is more important (before speech) is language. I would focus on that. Has his language skills (in spoken English and ASL) ever been evaluated? How do they compare? Or does your state not evaluate that? I know most states will do that for early intervention (0-3) which unfortunately Nik probably missed those services as he was adopted at 4 (am I remembering that right?) Some schools (namely bilingual schools) will evaluate both in school aged children.

    Where are you considering moving? In state or out of state? There are some great bilingual ASL/English deaf schools (you are not required to place him as a residential student) who also would provide support and services for CIs. That would allow him to continue to acquire language and develop speech. I live in MD, so I'm a bit biased, but MSD-Frederick is a great school. They are a day school, and only have residential services for middle/high school. I interned in their spoken English class last year. I've also heard great things about TLC in Framingham, MA.

    I don't know much about the school for the deaf in NC.

    For family camps that use ASL - there are some out there. There are also many camps for kids throughout the US. The Clerc Center has a full list of all camps (oral, cue, ASL, etc). Some schools will host their own family weekends and the American Society for Deaf Children hosts a conference every year - it was in MD this past summer.

    Here: http://www.gallaudet.edu/clerc_center/information_and_resources/info_to_go/resources/summer_camps_for_deaf_and_hard_of_hearing_children.html

    And here: http://www.deafchildren.org/

    If he continues to develop language in ASL, those language and communication skills will carry over to spoken English as he develops speech. I would not worry about either-or.

  5. I work with non-verbal children and we have iPads to help them communicate their needs. We were trained the other week and it is amazing what apps are available.

  6. As an SLP, I definitely think total communication is the way to go, and it sounds like you are feeling like that might be the best thing for Nik. I agree with the comment that communication/language is more important than speech, and it's a shame that some professionals don't understand that ASL has NEVER been shown to inhibit verbal communication.

  7. My son is deaf-blind and sign language is not an option for him. He, too, is much behind the curve developmentally, but he definitely understands what we are saying, just doesn't communicate well. His speech therapist recommended a DynaVox communicator that he used for awhile, but his speech is getting much better. We also have 10 children at home (and 1 in the USAF) and we homeschool. We have been able to give him a much better education than he can get at any deaf or blind school, as we meet his "whole body" needs - spiritual, emotional, physical, and mental. He is happy and thriving and, as far as I'm concerned, that's worth more than any test or evaluation ever will be!