Friday, February 19, 2010

Rights of Deaf and Hard of Hearing Children in Iowa

Below is a link explaining a bill that has been presented in Iowa!  Read more to hear about the Bill of Rights that that will hopefully be passed in our state.  Honestly......I am amazed that it has to be in writing that just because Landri is deaf that she is entitled to lunch and recess at school.  Seriously? Follow the link below to read more!

http://coolice.legis.state.ia.us/Cool-ICE/default.asp?Category=billinfo&Service=Billbook&menu=false&ga=83&hbill=SF2342

"Landri....Landri....I hear that!"

So much to update I am going to have to break it down into mini-posts!  Since my last post on Landri's journey to learn to listen she had another mapping appointment!  We were especially excited for this one as we were told that Landri would be put in the sound booth and that they would try to get an audiogram out of her. In the 4 weeks between appointments they had a policy change and no longer do sound booth testing until one year post activation.  However, after a little convincing they agreed to put her in the booth with the time we had left at the end of her mapping session.  What a different world it is to be in the booth with her knowing that she can hear!  Prior to her receiving her cochlear implant they did booth testing on Landri both with and without her hearing aides and she never responded to a thing....zilch.  As many hearing tests as your child has when they have a hearing loss you think that you would get used to those tests, but honestly sitting there watching your child completely oblivious to the sound around them never got one ounce easier.....always hard to watch even when you already knew she had no hearing.  Sooooo...fast forward to NOW when we know she has sound and we were SO jazzed to get in there!  They start by trying to condition Landri to look at a box with a blinking Big Bird in it everytime she hears a sound. We had a fabulous Audi, Kenny,  in the booth with us that did so great entertaining Landri and keeping her interest.  The first round was to gauge Landri's reaction to sound they plug into the booth.  Landri "ignored....we hope" a lot of it.  The results on this test indicated a clear response between 40-55 dbs across the different frequencies....our goal was somewhere around 25 dbs. They then tested Landri on speech sounds...the 6 Ling sounds we have been practicing at home.....she did a bit better...between 35-50dbs.  Of course...I am like..."what the heck?"!  But, the Audis reassured me that it is common for a little one as young as Landri to ignore many sounds their first time in the booth.  I am not overly concerned because I feel like Landri is reacting well to sound at home.  Of course, the opportunities in this journey to second guess yourself, wonder if you are doing something wrong, or to worry you are missing something, simply never end.  In the back of my head I wonder if we haven't done a good enough job conditioning Landri to react to the softer sounds?  Seriously I feel like we work so hard, but there are always things that fall thru the cracks.  I mean maybe we got tooo caught up in always saying "vroooom" for a car, always saying "up, up, up, up", always saying, "Mommy open the microwave, mommy close the microwave, oh..Landri's hungry!, let's listen for the beeps!"...I know my CI mommies can relate....that maybe we haven't pointed out and reinforced softer sounds enough?  To calm my mommy nerves we are now doing all the things we have been doing PLUS sprinkling in activities that really CELEBRATE softer sounds!  Wooo hooo!  The weird looks from other people at the Mc Ds playcenter when we clap and celebrate every sound that we hear in there is becoming old news!  Our family loves sound! :-)  Although....Halle could do with a bit less "excitement" about sound when we are in public at times. :-)  So...any other CI mommies that read our blog...should I be concerned about Landri's first booth results?  If your answer is "yes" you are worried, please send a bottle of wine in advance of your post.  :-)

When I started this blog I wanted to be so awesome at updating every new thing Landri heard and understood...but that is just so hard....so here is our update thus far!  I am sure she is trying to communicate more and likely understanding more, but so far I only put it on the list if I am for sure, for sure....for sure.

MILESTONES

Receptive - Landri understands these words with no visual cues
Dog
Baby
Cow
Halle
Bye Bye (although so hard to tell if this is situational)
Where
Landri

She also associates the following sounds with the right item
"Ahhhhh" for airplane
"Mooooo" for cow
"OooooOoooo" for firetruck

Expressive
Landri isn't "saying" any words yet so this is hard for me to figure out how to track. So here it is.  She will pick up the airplane on her own and say "ahhhhhhh". She will play with her cars and say "rrrrrrrrrr" for "vroom vroom".  She will say "mmmmm" for "moooo" when she plays with a cow.  She also says "mmmmm" when she plays with her ice cream cone or when feeding her baby (like "mmmmm good/yummy". All of a sudden we are noticing that she is making so many new sounds and varying her pitch. Everything is "sing songy" vs mono tone.  I am confident that she is "saying" other things I just need to figure it all out.  I mean clearly she is genius. :-)  She has been playing around a lot more with her facial expressions....blowing raspberries a lot again, opening her mouth big and wide.  I am taking these as all good signs that we are moving in the right direction toward communication!

Wow...it feels good to write this all down!  Also to get it in her blog...we consistently see her react to all Ling sounds except "eeeee"...but she tested the best on this sound in the booth.....go figure!