Thursday, April 26, 2012


just wanted to share something
I put together for Aiden
now that he's been FOUR
for a whole month now!

It's amazing how once they turn FOUR,
they immediately become BIG.
It was like over night that

where did the time go?

I can tell him to do things, 
like, "Go get your pajamas on."
and he does (well sometimes).

He's saying BIG {100%} BOY things like,
"ewwww! My foot farted!!"
then laughs his head off.

OR how about this:

as he comes running into the house,
laughing hysterically,
"MOM! I pull my pants and girls see my unnerwear on,
and girls say, heeheehahahaheehee, and I run!"
insert{FOUR year old grabbing stomach and belly (fake) laughing}
(and yes, he calls his underwear, "unnerwear on" just like he
always calls the toilet, "potty first")

oh and I can't get away without noting,
it was soon after he turned FOUR,
that Aiden first advocated for himself on the playground,
as a little boy stopped in his tracks and asked me,
"What are those things on his ears?"
and Aiden very proudly looked that boy in the eyes, smiled and said,
"Those my CIs!"
AND my four year old is now APPROACHING kids 
on the playground all by himself and saying things like,
"C'mon boys, lets go play!"

ok, this is HUGE. 
seriously. HUGE.
you go FOUR year old!

I asked him the other day if he was my baby,
and he said, very matter of fact,
"No mom, I'm daddy's boy."
and then wouldn't even come give me a hug.

Yes, he is100PERCENT little boy.

and I love every little
ounce of his oh so adorable,
silly beyond words,
BIG FOUR year old self.

and the one thing he can't take from me,
is that he will ALWAYS
be my baby.

Friday, April 20, 2012

when it all starts to come together.

As I wrote a couple months ago, NEW BEGINNINGS have been in the works and all I can say is WOW. I knew in my heart a lot of these changes were what we needed to move forward. No regrets.

My son is taking off.

For example:

  • 2 MONTHS AGO: "Help you mommy!" TODAY: "Mom I need help! I can't reach my chocolate milk! Mommy help me please!
  • 2 MONTHS AGO: "Kailyn soccer. Aiden park." TODAY: "Kailyn go play soccer and mommy and Aiden go play at park. I like the park mommy. Oh thank you!" 
  • 2 MONTHS AGO: "I want bed mommy." (meaning he doesn't want to go to bed). TODAY: "After bath, time for bed? I don't want go bed, I stay up you and daddy." 
  • 2 MONTHS AGO: "What's next?" TODAY: "After school, library and get books, then what's next?" 
  • 2 MONTHS AGO: "Aiden Lucky Charms please?" TODAY: "I hungry mommy. I have Lucky Charms no milk."
  • 2 MONTHS AGO: "Ow Kailyn!" TODAY: "Kailyn don't hurt my head! That hurts! owww!"
  • 2 MONTHS AGO: "Aiden three year old." TODAY: "I four years old next year I five and then six. I not three no more."
  • He's using phrases like - "Oh, it's so beautiful!" and "Wow! That's amazing!" and "I am so excited mom!" and "I said to hang on." (really? I must say this.)
  • He's picking up on language through incidental learning left and right. He's expanding his answers to questions to include words within the question.
  • When I didn't understand that he wanted me to turn the radio OFF in the car (I thought he was saying up) he overstressed the oFF saying it perfectly (he really has a hard time with this letter) and when I asked, "Why?" he answered, "BECAUSE it's too loud!"
I kid you not. His language has SKY.ROCKETED. We still have a lot of work ahead of us, but I knew it was in that cute little head of his just waiting to explode!

I really need to write a post about Aiden's OT. She is uber-amazing. When I think about her, I smile. When Aiden sees her, his face lights up. She has a gift. I'm going to dedicate a post all to her, but wanted to give an update here.
  • Six months ago, Aiden could barely walk across 2 balance buckets, this week, he made it across all SIX (or seven?)!!!
  • He's running without falling (ok, most of the time).
  • He's processing multiple tasks in an a lot more seamless manner than he's done before (still a little ways to go, but the boy has made HUGE strides!)
A lot of his progress in OT transfers over to his speech. Again, need to dedicate a post about this. We're still scheduled for neurology in May, as he still has off balance days (or hours). I asked Miss A if she thought we could "graduate" soon, and she thinks we still have a bit to go. That's okay, because we'd miss her in our weekly schedule!

  • He is sleeping in his OWN BED and going to sleep in his OWN BED at 7:30 and falls asleep on HIS OWN! This is huge. TWO MONTHS AGO: I would have to lay with him every night as he tossed and turned and didn't fall asleep until well after 9 by which time I was also out.  Then he'd be up throughout the night, 3-4 times or more. I was getting no down time at night and neither of us were getting any sleep.
  • He has always been a happy go lucky kid, but I'm telling you, the kid has an extra pep in his step these days (literally, because he's learned to gallop (another HUGE milestone for him) and he does it everywhere we go).
  • He is eating better. I know kids go through stages, but it seemed like his appetite came back the same time all these changes happened. 
  • Him and I get the whole afternoon together - to be silly, play hide-n-seek or go-fish or legos (or work on those pesky /f/ words), or dance, or go to the park, or even just sit back and watch a movie together. It's amazing having this time back with him. I LOVE our alone time together. Seriously, PRICELESS.
He's coming out of his shell and showing us what he has. It's all coming together. I attribute a lot of this to being around HEARING peers (good language models), an amazing new teacher, his wonderful OT, and a new weekly AV tele-therapy program with the amazing Dr. Todd Houston and his grad students through the University of Akron (more to come on this too) ... 

OH, and he's FOUR ... and everything seems to change at FOUR. {SMILE}.

Monday, April 9, 2012

Hearing Loss in the Classroom - Video

Wanted to share this video someone shared on CICircle. It was the first thing I looked at this morning and it really caught my attention.

The message behind this video is loud and clear. Our hard of hearing/deaf  children work VERY hard at listening - especially in the classroom where there is always background noise (chairs moving, papers, tapping of pencils/feet/fingers, hallway noise, outside noise, computers humming, talking, whispering, etc - believe me, a classroom is rarely completely quiet) and not always acoustically appropriate environment - and they can easily miss information, not only from the teacher, but even more importantly, from the students around them. I have read over and over again that 90% of knowledge acquired by a young child is through incidental learning and I experienced this firsthand in my own classrooms.  As Aiden's mom, I must ensure that our school district and all his teachers etc. not only understand the importance of the appropriate use of any assistive listening device, but also (and just as important), identify clues that Aiden is hearing (or not hearing) ALL spoken information, especially that of the other students.

With Aiden in mainstream preschool now, I am forwarding this over to our district's Director of Special Education, Aiden's teacher, and all his therapists.  Although we are not using an FM at the time (there is a soundfield amplification system in his classroom as our audiologist recommends that a child with CIs not use a personal FM until they have the language to report back problems with how the FM sounds - static, not working right etc), we will be in the near future, as I want to make sure Aiden has every tool available to him in order to make listening in the classroom as easy as possible. PLUS, our district is so new to hearing loss and this will be beneficial in many ways and for  the other students with hearing loss.

Here are some other sites/articles I am going to share on hearing loss in the classroom as well.

If you have any links to videos/articles you presented to your school district while advocating for your child, please share in the comments section.

Thursday, April 5, 2012

looking back {can be a good thing}

Tonight I went back in time - 2008 to be exact - and read some old posts I'd written at the beginning of this journey, including my very first post


As tears welled (and continue to well) up in my eyes, my heart skipped a beat and my stomach turned as I was brought back to the fear, the unknowns, the grief. And as much as one would think I wouldn't want to go back to these days, how can I not. To me, they are the.most.important days to take it all in, to grieve, to be scared, to do whatever it is that one has to do to move on. Because it's the moving on part when things start to happen; and when things start to happen, it's when you can look back and realize how those fears truly do become simply amazing moments as you watch your deaf/hoh child learn to listen and then speak.

truly - simply.amazing.

and as I read my second post, these words stuck with me,

"Throughout my dad's dementia battle and taking care of him, I prayed for strength and God presented me with many obstacles, but I made it through. Was He preparing me for this? I'm guessing He believes I'm strong enough to take on Aiden's disability, and I will, head on, full force, and without a doubt, will be his strongest advocate; all while providing him with an atmosphere that he will always know how loved and special he is! I was meant to be Aiden's mommy and we will get through this - STEP BY STEP, DAY BY DAY."

I remember many days when I felt everything BUT strong; how I wanted to crawl back in bed and make it all go away, days I didn't want it to be my "new normal"

then a glimpse of today: 
  • {drama} "Mommy, mommy, mommy (insert fake cry), mommy, mommy the remote! (insert more fake crying) Where the remote mommy? Mommy help me. Mommy, mommy ..."
  • {tattling} "Mom, mom, mom, MOM! Kailyn not give it me! KAILYN give it me! You have share Kailyn!"
  • {hearing} "You hear that mommy? What's that mommy? I hear sound. What's that sound?" (and I have to listen extra hard to hear what he's hearing and think it's how he still points to his ear like I taught him to do way before he was even a year old)
  • {loves to hear} "Mom, mom! My CI! My CI falling off my ear! Help me mom." 
  • {love.} "Yay! Daddy's home work!" (as he hears the front door open)
  • {hide-n-seek} "I found you! You count now mom, I hide." 
  • {LoVe} "I love you mommy! Gimme hug and kiss!"
  • {tripleLOVE} "C'mon mommy, snuggle, snuggle." (as I try to get him into his bed)
and it's these simply.amazing.EVERYDAY.moments like these that I realize, I am strong enough now and I WAS strong enough then. This is by far a fly by night journey. Day by day, step by step has become our journey's motto ... and we still have a lot of work ahead of us. But because of this amazing technology, TONS of hard work, dedication, STRENGTH (through multiple avenues - mainly, CI/hoh parent support community), and unlimited HOPE, my profoundly deaf child is listening and speaking.

I recently received a message from another mom who is just starting this journey. She told me Aiden's story provided her hope. I cried. She made my day. This is what inspired me to go back and read some of my first posts. To go back and relive. I've been ecstatic about Aiden's recent progress, but have still had this piece of worry lingering in my mind. Going back and reading helped me realize just how far WE have ALL come, how much we all have grown. So THANK YOU. I needed these bittersweet tears, because sometimes, it is good to go back and remember. 

One of the first things that helped me in this journey was when our very first AVT, Dr. Morrison, gave me the following poem. I like to share it with others starting this journey as I think it's so important to know that it's ok to grieve, okay to be mad, but to also know in your heart, as you learn, as you grow, as you take those day by day steps, that the day will come when you can take a deep breath and smile. Just breathe. and smile. Because it will never be what you imagined and I promise, you'll be so glad you were the one chosen to experience it all ...

"God chose us to be Aiden's parents. How lucky are we."

and you wouldn't change a thing in the world ... because it truly is an AMAZING journey.


Welcome to Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Sunday, April 1, 2012

ABC and a little G

Since the last time I posted,
we have celebrated:

to be exact. 

soon after his second CI activation

We celebrated three years hearing with a trip to the park,

and some requested, "chocolate ice cream with sprinkles please".

love this face!

Then a week later was Aiden's,
the FOURTH one!
 we celebrated with a HUGE birthday/St. Patty's Day party combo.
It was an open house, and in the end, I believe
we counted 24 kids (from ages 1 to 16),
who were there to join in on the festivities.

Aiden saw his first St. Patrick's Day parade,
took some good whacks at his second ever pinata,
and ran around with many cousins and new friends.


love these sweet babies!

AaaaaannnnnDDD ...
I got to meet this

and her adorable children!

(I have a lot better pics besides this one from my phone, but cannot get my camera to download them! ugh)

She and I have "known" each other since soon after our boys were implanted.
We talk on the phone together,
and support each other through this amazing journey,
but this is the first time we met in person,
and it was pure awesomeness.

Peas and Cam are even more adorable in person! 
They gave me a hug as soon as we walked in
and were so excited to play with Aiden!
 It was great watching all three boys running around and
talking amongst each other about what to play next.
It was like they'd known each other for years ...
just like me and their mom.
I LOVED hearing Noah's amazing language and how it just flowed,
no different than any typical five year old.

The highlight of the day,
listening to two deaf children play hide-n-seek,
with a hearing peer,
each of them yelling out as they counted aloud,
from one to ten,
 then running up to let us moms know they couldn't find another,
and then all settle down to watch some Toy Story 3.
(well, the highlight besides sitting and talking nonstop to 
a pretty amazing mom whom I absolutely adore).

and last but certainly not least,


I packed up Aiden and Kailyn last week for their spring break and headed to Wisconsin.
Aiden has always been shy around my mom,
but this trip,
he discovered the MAGIC of GRANDMA!
It was pure bliss
as I watched them laugh,
and dance,
and TALK.
Aiden wouldn't leave her side.