Tuesday, November 20, 2012

The frustration of the unknown.

I think the hardest part of being a parent is the unknown... and trying to trust yourself to make the right decisions.

It's further complicated when there are extenuating circumstances involved. Especially related to hearing loss.  When you become a pregnant, you are thrust into this world of decisions.... you are now entrusted and looked to for answers about this new little baby.  It's scary for any new parent. Do I get an epidural? should I get vaccinated? Do I want to breastfeed? Which diapers do I want to use? Should I go all organic? What should i eat while pregnant? Who do I want at the birth? I have to create a birth plan? What pediatrician do I use? Etc. Etc. 

Then after you have your baby you have more decisions to make... from if you want to co-sleep, bassinet sleep, bed share, etc. How often to you want to feed? on demand? on a schedule? Do I want to go back to work? stay home? what daycare should i use? and the list goes on.
(I will share my birth story for both kids another day)

Then you find out your new one didn't pass a newborn screening test.  BUT if you are like 95% of the people I know, they instill some "hope" in you that the machine is faulty a lot and just follow up with an audiologist to be sure, but it's prob nothing, or maybe just some fluid. (which is another post) :-)

When you finally learn that your child is deaf or hard of hearing; and what that even means in relation to you child; you now have even MORE decisions to make.

Do you want to go all oral/verbal? do you want to sign? do you want to use cued speech? do you want to use a total communication method?  and Your still processing that your child cannot hear well!  You will also be asked if you want to use hearing aids, or if your child looks like a Cochlear candidate you will start those questions.  There are a lot of additional decisions to make... and guess what. unless hearing loss is expecting (runs in the family); You prob. have never heard half the words used or have any idea what is best and what you want to do.  I personally believe in trusting you instincts... God gave them to us for a reason.

We have gone the mostly verbal route with a total communication approach.
aka, we use spoken language with Chloe all the time, but are teaching her sign, mostly baby sign right now as we do not know ASL fluently.

I am SO thankful I have signed with Chloe, or else we would have ZERO ability to communicate, or for her to communicate back to us. It will help her no matter the route she goes down in the end.

Right now my debate is... do I continue focusing in on verbal communication, or do we introduce more sign/become more fluent in sign.  And if so, what type of sign? ASL or SEE (signed exact english)  Or do we want to go with the Aug. Communication device. (possibility)

I am still leaning towards trying to do it all.... which just exhausts me but I feel it gives her options.  I want her to learn to hear and listen. EVEN if she has to respond with sign or Aug Communication. I want to give her all the tools available to communicate and grow.  But it is hard.  Then my question becomes... is she hearing me? I know she can hear noise and beeps with her aids on.. but how distorted is it? how well can she decipher words?  Right now I am not sure how well she can... especially without lip reading involved or sign. 

I am working on coming up with what words she recognizes verbal only. (not lip reading and no picture or object) vs. what signs she knows if I show her (without verbal) the object or photo.  Then a 3rd category of if she is capable of identifying an object by pointing/picking by verbal only.  I am hoping these three things will paint a picture of what she is hearing, how well is she hearing, and what her true receptive language is by listening.  I am going to work on this for a week and keep notes... as I know one single day does not show the full range of her ability. 

The reason for this is she is not progressing with speech.  She is below a 12m old in the speech department. that is across the board... in all auditory areas. (now her signing vocabulary is a different story... she knows lots of signs and uses them spontaneously)  and that goes to show us that she is intelligent. She knows her shapes and some of her letters already, she picks up on things quite quickly and is social. 

The challenge is I think she has some Apraxia. (oral motor planning problems) so even if she is hearing clear she cannot make her mouth form the words.  BUT what if she is NOT hearing clearly... even if she has apraxia.... if she is not hearing all of her vowels and consonants clear and defined that will make learning oral motor planning 10x harder then it should be.  How can she be expected to practice and work on learning how to move her mouth to form sounds if she cannot hear the sounds clearly.  with a sensoneural loss... the hearing aids amplify the sound, but they don't make it clearer or more defined. it can be static-y and distorted still. But she is so young we cannot tell.  Normally you can tell a that hearing aids are not benefiting a child because when they start talking, they are missing certain sounds in most/all of their words. But for a child that can't talk... you can't.  and she also doesn't have a clear enough vocabulary to do speech recognition testing yet.  But I also don't want to wait until she is 4 years old, still not talking, with the language ability of a 18month old.  and then go OH she can't hear the sounds clearly even if she looks at the beep in the booth. 

So this leaves me with the task to do the best I can to figure out what is she hearing WITHOUT lip reading, and without signs/gestures.  The hard thing is she can still sign/pick the object correct sometimes if I let her lipread without her aids on. So I KNOW she can lipread. I honestly think she lipreads along with interpreting out body language to figure out what we are trying to say.  She hears us ask her do you want to go to the store... but if she cannot figure out context around it, and our body language she will think we asked her about a door. (for example)

I just want to plug myself into her little brain and know what she is hearing, how well she is hearing it, and know if she needs an implant, more sign language, or just us just to leave her alone! :-)

Overall, to conclude this rant...
My daughter is lovely and happy and confusing me, myself, and I... plus all of her therapist and doctors.  I am hoping this record I will keep may help us determine the next step.... if there even is one.


  1. Your daughter is extremely lucky. She has you helping her through the confusion. Yes, it will be confusing for her, especially as she gets older. But, there is nothing better than having a parent who loves you unconditionally. Believe me, this is not always the case. I wish you the best of luck. For some reason, I know you will do well.
    (hard of hearing since birth).

  2. Thanks for sharing your heart! I just found your blog on the halo hearing site. We met each other (you sat beside me) at the last hearing conference at Caraway. My blog is www.allisonfamilylife.blogspot.com