Tuesday, February 23, 2010

Oh Wonderful Listening Day!

We are really loving our new parent/infant educator, provided to us through Ohio's Regional Infant Hearing Program. Unfortunately, she is one of two people who services well over 80 families in this area and therefore only get to see her for one hour each month. Yesterday was our second time to see her, but really our first true therapy session. Even though Aiden was slightly under the weather, he performed beautifully. He responds very well to Miss N. and I can tell he really likes her.

She started with testing the lings and Aiden responded each time by holding the chip up to his ear, listening, and then dropping the chip into the empty diaper wipes case (great idea for reuse). Holy crap. We just may have this conditioned response thing down. I can only hope it carries over to the soundbooth in a couple weeks when we go back for another mapping.

After reviewing our previous month's activities (eating, sleeping, and going down the slide) with Aiden, she brought each item out (the Little People, the bed, the table, and the slide) and would say, "Oh, the boy is hungry. He wants to sit down and eat" or "Yawn, the boy is tired. He needs to go to bed." Sure enough, for the most part, Aiden performed each scenario correctly. He's getting it. He's not repeating much, but by golly, he's taking it all in, and he's getting it! He even gave us a couple spontaneous "bowwwn" (down) as he slid the boy down the slide (in which we always say "wheeee", but in which he refuses to say - grrrr).

The highlight of the day was a sound discrimination activity using musical instruments. We have never done this with Aiden before and both Miss N. and I were amazed at how quickly he caught on. She started by bringing out two cow bells, talked about them ("one for YOU and one for ME", "look, they're the SAME", "LISTEN to the sound they make"), they'd play them together, and she'd say, "Okay STOP! *pause for silence* Now, put the bell down." Then put hers away, out of sight, but left Aiden's in front of him. Next she brought out some wooden sticks, then shakers and repeated above.

After introducing each instrument and its sound to Aiden, she went behind a chalkboard with her set of instruments, while all three of his were still in front of him. She would then play one of the instruments, without showing him, and prompt Aiden to identify the instrument by picking up the his instrument making the same noise. The first couple times around, she had to play the sound, show him which instrument the sound was coming from, then I'd guide him to pick his up and play it all while talking about how the sounds were the same.

He quickly picked up on this game. By the third round, my little monkey was LISTENING to each instrument sound (and pointing at his ear when he heard it) without seeing the object, was DETECTING what the sound was, then was IDENTIFYING and choosing the instrument to reproduce the same sound he just HEARD!

Another SIMPLY AMAZING moment on our journey to help Aiden hear.

Wednesday, February 17, 2010

Aiden's Big Sister Rocks!

Aiden's older brother and sister have always played a huge role in helping Aiden hear and speak. They are not only great language models through their everyday interactions with Aiden, but two of his biggest advocates. Anytime they have a new friend over, the first thing they do is introduce Aiden and explain his cochlear implants before the person even has a chance to ask. They are very matter of fact, to the point, and PROUD.

Now of course, they still have that typical "sibling love" and get tired of me asking, "Can you please play with your brother while I do (xyz) and make sure you ..." and before I can get it all out, they finish my sentence with a big sigh of UGHness, "I know mom, talk to him."
Ahhh, for the love of siblings.

Now the one thing I have decided to start doing more of is including his brother and sister in some sit down therapy at home. As Aiden's getting older he responds to and imitates them much more than he does me, so we make it a fun game. Kailyn is especially great at this because she loves the praise of being such a "GREAT TEACHER" and "AWESOME BIG SISTER", whereas Ryan is like "whatever mom", but every once in awhile I can convince him to put his cell phone down and make his mommy happy.

Ok ... little side note:
As any parent to a CI/hoh kiddo will tell you, one of the biggest achievements is getting your child to:

1) repeat the Lings (ah, ee, oo, s, sh, m) back to you during the ling sound check, and
2) perform a conditioned response when they hear a ling (or tone played in the soundbooth) - or what is also referred to as "listen and drop". For example, when practicing the lings with Aiden, I will hold a block (or Lego or chip or ring or bouncy ball etc) up to my ear, say the ling, watch for his response, say, "I heard that", repeat the ling, then drop the block or whatever into a bucket. The goal is to get Aiden to do the same, so that when he is being tested in the soundbooth during an audiology appointment and hears a sound, he can show he heard the sound by placing a ring on a stack, a peg into a peg board, any object into a bucket ... anything of the like to tell the audiologist, "HEY, I HEARD THAT SOUND!" It just makes for easier soundbooth time AND provides the audiologist much better information for exactly what the child is or isn't hearing so they can adjust their map accordingly.

So, today I opted to solicit Kailyn to help me out with the Lings for the first time in quite awhile. Now, get this. When I do the lings with Aiden, he'll entertain me and play the "listen and drop" game, but RARELY repeat the Lings. Check this out (and listen closely to the /s/ and /sh/ ... he's been playing with both these sounds lately, but has never repeated them for me; and make sure you turn the music off on the left first).

Note: I was testing the right implant alone. I had to remove the left completely, because if I just detach the coil, he puts it right back on! Love it!

After the boring ling checks (which I have to do while he's in his chair or I get NOTHING in return), we always have some fun, so Kailyn turned up the tunes and they jammed to some music. I have NEVER seen Aiden dance like this. What I love most is that he's imitating Kailyn plus busting out his own moves. Plus, he notices when the music stops and asks for more! Absolutely love it!

(This is not captioned since it is just Hannah Montana's "Ice Cream Freeze" playing in the background, Kailyn singing here and there, and them dancing)

Guess I need to get his sister involved a lot more often! Thanks for being such a great big sis Kailyn! Just like you're dancing, you rock!

Thursday, February 4, 2010

Loving Me Some Laurie Berkner

Ever since Aiden was a baby, I have always sang to him. Even if he couldn't hear me, I still sang. I didn't want to lose the habit of singing, because I knew one day soon enough he'd hear his mommy's voice singing sweet nothings into his ear.

Then he got his CIs and I really sang. Everything I did, I sang to him (if I couldn't think of something to sing, I sang whatever it was I was doing to the tune of Row, Row, Row Your Boat or some other catchy tune). I narrated our activities through song. And I still do.

I also downloaded tons of songs from iTunes and one of my favorites is Laurie Berkner. Back last summer, when Aiden was about 5 months post activation I would play songs from the computer over, and over, and over again. I'd pull out the speakers and turn up the music full blast. I'd pick him up and dance with him, sing to him, and try to make him dance.

Nothing. Nada. Nilch. Zero. Not even little tike be-boppin' moves.

and I received nothing from him for a good while (well, he'd do motions for me to my songs, such as Twinkle, Twinkle or Patty Cake, or my own lovely "narration" tunes). Finally in November, I ordered the Laurie Berkner DVD. I figured maybe if he SAW them dancing, he'd do the same. He loved it, but still wouldn't dance. In fact, not only did he not dance, he just wanted to SIT and watch the video and give me crazy looks as I danced around like a fool in my living room trying to get him to do the same.

I continued to play it (and other music) all.the.time. I continued to sing to him, all.the.time. I continued to dance around my living room like a crazed mommy all.the.time (good exercise though). We are such a huge music loving family and I couldn't imagine if Aiden didn't enjoy it with us. It scared me he just wasn't "getting it". I've heard many stories and seen many videos of CI kids enjoying music, dancing, playing instruments, and even carrying a tune. I just continued to hope Aiden would too.

That was two months ago, and not only is my little monkey finally getting up off his bottom, but he's LISTENING to the words then IMITATING the actions even when his back is turned from the tv screen! He's PREDICTING what's coming up next, by HEARING the tune and the words, and PERFORMING the actions before some words are even sang! and best of all, HE'S STARTING TO DANCE!

Laurie's music is so AWESOME. She has totally taught Aiden what turn around and shy are and has helped me with teaching him many other GET UP AND MOVE verbs, animals, how to high five, AND has a lot of the LINGS throughout her music. In fact one of my favorite songs from her is Walk Along the River, because the chorus of it is all "oo-ah's" which "oo" is one of the lings Aiden still does not say. Not to mention her tunes are just catchy (I find myself singing them in my head way too much) and Aiden's finally catching on.

Once again, I'm truly amazed by the miracle of CIs. Yet another check on the list of things my son wouldn't be able to do without them - hear music. Check him out.
(make sure to turn off the music to the left)
(I am in the process of captioning ... it's mainly Laurie Berkner singing throughout)

On the same note, him and I also TRIPLE LOVE the Tune-Ups CD from the Listening Room on the Hearing Journey website by Advanced Bionics (this site also has great activity ideas - even if your child doesn't have AB, you can still sign up and access the Listening Room). The program was created by a Speech and Language Pathologist along with a Board Certified Music Therapist for young children with hearing loss. It's integrates language, music, and listening and is so much fun to sing and perform to.

Aiden doesn't realize just how much therapy he's getting through all this music, and to me, that's what it's all about! What are some of your favorites to listen and dance to?

Monday, February 1, 2010


I've told myself before even starting this post, I need to be brutally honest with myself. Sometimes the truth hurts and sometimes it's just a good eye opener to reality.

The day we fitted Aiden for hearing aids, they told us not to expect much from him in the means of seeing reactions - he had a profound loss, he was DEAF and they probably wouldn't do much. It tore me up inside. I wanted my baby to hear my voice NOW not later. I refused to believe them and I fed my child every ounce of language and all the listening opportunities I could. I became a walking auditory verbal model. I put his hearing aids on when he woke up and took them off when he slept; and after a month or so of still not seeing a reaction, I didn't quit. At Aiden's first soundbooth, post hearing aids, he tested around 80db across frequencies. By the time he was 9 months old, they questioned holding off on his simultaneous CI surgery as he was testing up to 50 db across frequencies. HE LOVES TO LISTEN.

Before Aiden's CI surgery, I set up a schedule with our audiologist for Aiden's multitude of mapping appointments. I wanted both ears to be activated at once, she did not feel comfortable with that want. In fact, there was a seven week gap between activations. Our audiologist provided a good explanation of how she wanted to be conservative and make sure Aiden adjusted to his first "new ear" before mapping the second. I took a deep breath and trusted her. After his first two mapping appointments, within the week, Aiden tested at 25 db across frequencies and we moved up the second ear activation by over four weeks. HE LOVES TO LISTEN.

In therapy, I was told not to get too excited in the beginning as it would take quite some time to see results. "His ears are like a newborns."; "He's only one month hearing."; "Give him time." Within a month he was turning to his name. After two months of bilateral listening, Aiden was saying, "mama", repeating two of the Lings, understanding the word "no". HE LOVES TO LISTEN.

Throughout much of our journey, Aiden has been a rockstar; awing his team of professionals and showing them just how much he truly does love to listen.

That's why it has been SO HARD the last four or five months seeing my boy go from leaps and bounds to an almost complete standstill.

I've said it before, but I'll say it again, they say you shouldn't compare your child to others, but, oh well. We all do it. I saw how other munchkins activated around the same time as him were really starting to talk. I took it with as much ease as a mom who's main agenda is to get her deaf baby to talk, can. The worry grew as I saw my baby not only NOT talk, but lose some of the few words he had. Even scarier though was that the only lings Aiden used in babble was the ah and m ... no ee, oo (I was okay with no s, or sh, as these are high frequency sounds and typically come later). And we were 7 months past his first ear activation.

Fast forward to November and Aiden's speech evaluation at his school. At this point he is 8 months post activation and receptively tested at five months! I drove home in tears. Aiden's audi came back from maternity soon after and between her and Aiden's school, we found out his map was VERY off. We also found out that he had some sensory integration issues and additional OT issues. I felt like I was going to break down. I had worked so hard since this little man was brought into my world and I didn't know what else I had in me. I felt we were back at square one.

We're now in February - almost 11 months post activation of the first ear and we have about 12 words consistently used in context; only have the /ah/ and /m/ for lings (although for a whole two weeks he walked around saying "sh", but "sh" has since disappeared); he still does this horrible nasally deep breath like he's gasping for air sound (yet, not near as much as he used to); and he still isn't bee-bopping to music like I thought he would by now. Receptively though, he's rocking right along. Yet I still CONSTANTLY WORRY. I think I always will.

Since our move to Ohio from Maryland, we've met with our new AVT and today we met our new audiologist. Both, highly recommended professionals in their league. Both told me the same thing our wonderful audiologist back at Hopkins said,

"He's responding to all the lings at good levels across all frequencies, he shows he understands receptively, he's only 10 months "hearing", he has a wonderful personality, no he doesn't have much of a vocabulary, BUT I'm not worried about him because I can tell ... HE LOVES TO LISTEN!"

Since I have left Maryland, and after hearing our new team's assessments of Aiden, I have made some HUGE realizations:

I really need to take a step back and READJUST ... not my expectations, because I will always carry high expectations for all of my kids ... but my FAITH - in myself and what I do not only as Aiden's teacher, but as his MOTHER.

To start thinking first in terms of how far he's come - of the POSITIVES; and not of what he's lacking.

Aiden's world doesn't have to be all about therapy all.of.the.time. Yes, we make each moment a teachable one as much as possible, but it's okay to LET IT GO now and then ... in fact, I'm finding out it's quite healthy.

Each kid is their own kid and will perform when they are ready to perform. I can't compare. Aiden is Aiden. He will do his thing when HE is ready.

Remember that everyday this boy makes me smile, makes me laugh, and there's not a day that goes by that I'm not SIMPLY.AMAZED.

My son IS A ROCKSTAR. He may not have a vocabulary that I WANT HIM TO HAVE yet, but he's doing such a phenomenal job listening! What more could I ask for from my DEAF CHILD?

He will dance when he wants to dance. And I will.not.stop playing music videos, dancing, and singing my heart out to him.

He will say some form of "shoe" (instead of grunt) when he's ready to say "shoe" and by golly, after all the silly monkey sounds, tapping on my "tEEEEEth" and "bEEp-bEEps" I've done, one day he'll screech out that "EE".

He will SAY some form of his brother and sister's name because I will continue to repeat it over and over and over again until he does.

He will get the /p/ and the /oo/ and the /ee/ and put them all together yelling "POOPEE" throughout the store at the top of his lungs ... and as he does, I'll just laugh, knowing I worked on all three of those damn sounds since the summer of 2009!

One day, it will all come together, and when he's ready, he will explode, because my boy truly does,