Showing posts with label life with Aiden. Show all posts
Showing posts with label life with Aiden. Show all posts

Saturday, November 16, 2013

just had to post

I'm in the middle of writing a long overdue (as usual) update on Aiden, but just had to come share a special moment shared by him and me this morning.

Early this morning, as everyone else slept, Aiden and I sat on the couch snuggling, me trying to search for Christmas ideas on the internet, him trying to get me to play Candy Crush on facebook. I don't even know what started the conversation, but we started talking about being deaf, hearing aids, and cochlear implants. He understands he's deaf, he knows that not everyone needs CIs to hear, and honestly, he never says much about it. He loves his technology and at times, even prefers to be without.

So as we talked, we watched videos. Videos on his hearing journey - from the time he had hearing aids (he thought it was hilarious that he was in the audiology booth as a baby!) to his activations, to his one year hearing video. It was after watching this one year hearing video that he snuggled up closer and said,

"I want to make a video. I'll say how I hear with cochlear implants and why I love them. and about (being) deaf."
{TEARS}.

This March will be his FIVE year hearing birthday.

Celebration indeed.

and what a perfect project to work on together.

In the meantime, a little flashback to his first year hearing video - From Silence to Sound.

Thursday, November 8, 2012

and the preschool teacher says ...

(posted this on Facebook, but trying to catch up on his blog and this is definitely "baby book" material)

first - one of my favorite "waiting for the bus" pictures


and here is a little snippet from Aiden's teacher at my recent parent-teacher conference.
(remember, Aiden is in a mainstream (nontypical) preschool class with 13 kids, all hearing with 8 typical peers)
"He reads the board out loud before I have a chance to,
he reminds me when I miss something in our daily circle time routine,
we have to ask him to give the other kids a chance to answer the questions,
and he's one of the most vocal in the class."--Mrs. M.
{simply.AMAZING}

Sunday, October 28, 2012

Quick Catch Up

LONG.overdue.UPDATE. 
{in pictures}.
we've been busy.
very.very. busy.

someone got glasses for being farsighted.
more equipment, but have to say,
pure {CUTE.ness}

he also got the new Cochlear N5s!

Check 'em out! You can't even see them from the front anymore!
pure {EXCITEMENT}
(more to come in a separate post)

someone else got a nice fresh hair cut.
because her school had a bout of lice, and unfortunately, so did she.
{EW}
what a trooper she was.
what a wreck her momma was.

my first born turned SIXTEEN.
wow. it can't be possible that I'm the mother of a 16 year old.
{SIGH}
He also got his first job. at Wendy's.
and no, he doesn't have his driver's license and this momma
is in no hurry for him to get it.
in due time, right along with good grades and that one word - responsibility.
{smile}

then there was also the first dentist appointment.
Do you know how AMAZING it felt to sit back and let Aiden
answer all the questions the hygienist asked?
{MIRACLE} 
of cochlear implants.

Ryan and Kailyn have really stepped it up with their little bro.
they read to him.
play with him.
have conversations with him.
argue with him.
teach him.
more so than ever before.
pure{LOVE}

...just because

my boy's gross motor skills and motor planning skills
have skyrocketed.
he's not stumbling near as much anymore, but instead
jumping and running and leaping and everything else in between.
pure{BOY}

he loves to {LEARN}
asking questions ALL.the.time.
enough said.

We lost our kitty Bonz.
 we had him eight years,
he was a part of our family.
it's been difficult for all of us,
(especially his brother Baby)
and he is dearly missed.
{RIP} sweet Bonezee.

Thursday, September 20, 2012

Not sure which I'm more shocked from ...

his sentence,

"No thank you mom I don't want to eat no chocolate cake, sorry." 

count them - THIRTEEN {yes, 13!} words!

Or,

the fact he honestly didn't want any homemade chocolate cake.

wow.

Friday, August 31, 2012

First Day of Preschool 2

Oh my gosh my blog hates me. It's been so neglected this summer and I have so much to catch up on! Now that all three kids are back in school and our "in-school" schedules are firming up, I hope to have a little more time to things I like to do.

Aiden and I started talking about him going back to school a few weeks back and at that point, he wanted nothing to do with it. He words exactly, "No mommy! I don't want school! I stay home with mommy!" Ugh.

Then we went to meet the teacher. He has the same lovely teacher and aide as he did last year (from April to June), but his classroom is now in the new elementary school and is a lot bigger, has even more center areas, more toys/books, and overall just AWESOME. By the time we made it to the car, he was counting the days until school started.

As Aiden headed off to play with all the kids, I scoped the room. I was nervous because I knew the room was going to be a lot bigger, with windows, and no carpeting. I spoke with his teacher last year about making the new classroom a good listening environment for Aiden, and I have to give her a big kudos as she did a wonderful job making it as acoustically appropriate as possible. Such as:

  • Huge area rugs throughout. Now it's not completely covered, but each center area has it's own big rug.
  • Tennis balls on the chair/table legs.
  • Walls very well covered with bulletin boards, posters, etc.
  • The room is broken up into small centers/sections with tall bookcases, shelves, etc as dividers. 
  • Soundfield all set up and ready to go
  • Classroom is at the end of a hall that is not busy and the outside noise is very minimal since the room is on the opposite side of the building as the playground.
The only thing that didn't meet my checklist was that the two windows did not have curtains. 

This year, Aiden is going back to our district's special education preschool. There are eight or nine kids in his class and four of them are typical peers. He attends from 8:30 to 11:00 five days a week, and it is beyond perfect! This way we are able to fit in AVT, OT, and of course, MT (mommy therapy). I'm not ready to give him up all day and I absolutely love this schedule!


So without further ado, my four year old PRESCHOOLER, who LOVES going to school, knows all his classmates names already, and tells me about his day without me having to pull it out of him!

"Hurry mom! Where's my bus?"
"Mom! I HEAR the bus! It's coming!"

Oh my gosh I'm so excited!

Such a big boy!

Friday, June 1, 2012

in which something breaks

Aiden's collarbone that is. Yep, our first broken bone in this household. I've been a mom for almost 16 years, so I'm pretty happy this is just the first (knock on wood) and pray to God it's the last. With my little monkey though, who knows what's ahead!

So it started as trying out his new big boy bike. A bright orange, very cool, Harley Davidson themed Schwinn with training wheels, compliments of grandma. He just wanted to try it out.

So my husband guided him down the driveway. Not more than 30 seconds later, he turned the handle bars too fast and was over before my husband could catch him. Shoulder took the brunt, then the head.

I know, I know, where was his helmet? There wasn't one. Don't judge.

So after assessing the damage - huge goose egg on head, bruised shoulder, and a very upset, shaking, little boy (who honestly rarely cries) we decided to take him to Urgent Care to get him checked out. While at Urgent Care he started falling in and out of sleep on his daddy's lap. They assessed him, called the children's hospital, and decided to transport him in since he was showing signs of concussion.

As the paramedics hovered around and over him, he couldn't see us but,

he could HEAR us.

He heard mom's and dad's voices comforting him the whole time. He heard us as we talked about everything that was happening. He heard us tell him we were going to the hospital to fix his shoulder. He was able to perform simple tasks that the paramedics (or drs at the ER) asked him to do.

He didn't cry. He showed no signs of fear. He didn't fight anything.

and I attribute it all through the fact that he could HEAR our voices.

My husband rode with him in the ambulance and I met them there. He's VERY attached to daddy right now, and as much as I wanted to climb in with him, I knew he wanted his daddy by him. Plus his daddy is much calmer than I am, and kids pick up on those things.

His daddy sent me this picture from the ambulance to let me now he was doing better. His daddy knows me pretty well and knew I needed this.
Can you believe he didn't fight this!?! He even tries to smile in this situation! Seriously the happiest boy I know.
By the time I got to the hospital, he was sitting up on his own, and back to himself. It really scared me how he wouldn't wake up and kept falling in and out of sleep at the urgent care center. So when I saw him sitting up on his dad's lap and he said, "Hi mom!" as I walked into the ER, I felt a bit more relieved.
at the ER.
Of course we went there without a t-shirt or shoes (we had to cut his shirt off him because he screamed so badly when we tried to take it off). AND, of course he had Jackson Pollock paint day at school that day, so he had paint in his ears, his hair, his feet, etc. All the medics kept saying things all worried, "Is his ear bleeding?" or, "There's blood here in his hair." or my favorite, "His feet, what's all over his feet?!"It was actually quite amusing. and of course this is how the story goes ... it's how we roll.

He got his first x-rays - which again, thanks to his CI, he was able to listen and do as the technician needed him to. I called one of my bffs, this CI mommy, as I was a nervous wreck on the way to the hospital. She calmed me and suggested I call Cochlear. I was VERY impressed at their quick response to get me in touch with a pediatric audiologist who reassured me that a x-ray and/or cat scan would be fine, but to just take off his CIs. They also suggested to get his maps checked soon, especially with the head trauma and his EVA.
first x-ray
my brave boy eating a lollipop as we wait for X-ray results
of course you get a chocolate shake anytime there is an ER visit
home resting. His sissy was so worried!
and check out those feet and nails from paint day! ew. but goes so well with the story.
and of course, the AV mom in me was snapping away, because just think of all the vocabulary we get to talk about now! Experience book in the making.



Sunday, May 27, 2012

for the love of popsicles

aiden + popsicles = summer love.
for aiden, popsicles should be a major food group.


Thursday, April 26, 2012

{FOUR}

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
he GREW UP.

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.
tears&smiles.
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.
{sigh}


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:

HIS SPEECH and LANGUAGE
  • 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!

HIS OT
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!

HIS DAY to DAY 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}.

Thursday, March 15, 2012

HeLLo SuNsHiNe!

It has been absolutely beautiful out! And gorgeous weather = parktime! We went the other day after A got out of school (have I mentioned how much I LOVE having my afternoons back with him!). As I sat back and watched him, I was amazed at how far he's come gross motor wise. There is NO.THING better for OT and PT challenges than the.PARK. Last summer he made leaps and bounds (which I attribute to all our park visits), but watching him on this particular day I was amazed how he was a madman running, climbing, and all over the place with NO falls!


This same day, a little boy came up to Aiden and asked, "How old are you?" Aiden looked him right in the eye and belted out (with great confidence), "I four years old!"

Okay - first off, he's three for a few more days, but I loved how he wanted to take this stance of "I'm a big boy and can hang with the big boys"; and second, he typically never looks at, much less talks to, any strange child or adult without me urging him to answer back. This momma was smiling ear to ear.

A couple days before, I got all three of my kids to come outside and enjoy some fresh park air. Ryan and I played a few good games of tether ball while K & A played hide-n-seek and ran around.

 my girlie-girl.
mom's boys.

 we played 'til the sun went down
(then went out for chocolate shakes!)

my life.

Hope you are getting to enjoy some sun-shiney rays too ... perfect therapy for the mind & soul.

Friday, February 24, 2012

and yet some more Out of the Booth mapping

There's not too many CI moms I know out there that would be happy to walk out of the sound booth with this audiogram (top line = left ear and bottom line = right ear):


now look at the speech banana and mentally place his audiogram in it (and remember, anything above the connected lines, he CANNOT hear).

not good. at all.

but, if you were a fly on the wall in the booth with us, you'd know why I am quickly learning to take his audiograms with a grain of salt. Bottom line,

Aiden does not perform well in the soundbooth. period.

How can I take this audiogram too serious when this same little boy can repeat each the six ling sounds with me (each ear alone) standing 10-12 feet behind him and speaking them at just above a whisper? According to this audiogram, he's far from hearing the /s/, and pretty darn close to barely hearing the /m/ or /sh/, yet he can imitate them and uses them all in speech pretty perfectly. Now, he has been dropping his /p/ and the endings of words (t, ed, s, k), and his audiogram does show this. But it's not a great representation of what he is truly hearing.

Aiden clams up in the booth. When he's not sure of himself, he does nothing. He's not one to sit still. He knows what he's supposed to do, but shows his power. He does great on the NUCHIPS (a speech perception test where he has to repeat back a spoken word) and even did sorta ok on the HINT (hearing in noise test where a sentence is presented in noise and listener has to repeat it back. He scored 49% on this, not good, but not bad for first time ever taking it). Listen and drop to pure tones? ya, whatever. He'll hold that block or marble or peg or whatever it is to his ear for.ever. Goldfish, he eats them. m & ms, chocolate melting all over. Stickers, sometimes, but just for a bit. Marbles, he's shaking the can (and when we move it, he reaches out to touch it just to hear it make the slightest noise, on purpose, then looks at us with that grin, again, showing his power). Tones mean no.thing to him and so it is very hard to get a true solid audiogram. 

And without a good solid audiogram, how the heck does an audiologist provide a good solid map?

based on phonemes.

Leaving the booth I was terrified at the thought of the changes they were going to do to his maps, but once we got to her office, I saw right away she was all ready to test him herself, by having him imitate back the different phonemic sounds which make up the words in our language.

and by doing this, she verified that he is actually hearing the /s/, /ah/, /sh/ and /g/ among a few others, and that he really is missing the /p/, /k/, /t/ and /f/ among a couple others. She'd then map him based on his imitated responses and test him again to confirm. 

(a little funny by my wee entertainer - as the audiologist was asking him to imitate a sound, she noticed aiden was watching and responding by which letter her finger was on instead of giving the sounds based on hearing. After a good laugh, she had to pick up her paper so he couldn't see which letter she was wanting him to imitate. She didn't realize mr. smarty pants knew all the sounds of the alphabet).

By the time she was done he imitated back a /th/ and /v/ sound! Now, he may not be able to perfectly voice these sounds in words (saying a sound in isolation is a little different than putting it together with other sounds to produce words), but the fact that he can near perfectly imitate them back, tells me something that his audiogram doesn't - HE IS HEARING ALL THESE SOUNDS! 

Here are a couple other posts about this out of the booth mapping experience.
We have gone round and round with his maps since six months post activation. Some would blow it off that he just doesn't use his CIs as well as others, that he needs more time, that he's just a "late talker" a "boy" and that "he'll get there". Well, I don't have time to wait and see when it comes to my child's hearing and spoken language. I've learned, when a child isn't performing at a level they should be, first things first, CHECK TECHNOLOGY. and for this reason, we started this phonemic "out of the booth" mapping. We needed to know that Aiden had a good map before slapping another diagnosis on him. Yes, Aiden does have additional {small} challenges, but by golly, this has been heaven sent, and at least now we KNOW he has a good map to better tackle his other challenges; we KNOW he's hearing all the sounds in order to put them together and into words; we KNOW what he is hearing is what he should be hearing.

and if that's not enough for ya, based on the Goldman-Fristoe 2 Test of ARTICULATION, Aiden has made:

12 months progress with his speech sound production in a matter of five and a half months!


oh, and btw, we started phonemic mapping him six months ago

Tuesday, February 21, 2012

love

love
is watching my deaf son
dance
(with quite the rhythm)
to the latest Wii craze
Just Dance 3


and then later,
listening to him
hum or sing
parts of the songs he just danced to,
probably because he HEARS them
replaying in his cute little head.
--------------------
love
is watching my deaf son 
write his name and the alphabet with chalk on the driveway and
speak 
each letter out loud as he writes it.


and then later,
seeing his face light up as he
hears
the kids from ACROSS THE STREET, come outside.
so he grabs his bike and chalk, 
and let's me know through
spoken language,
"MOM! Friends outside! Let's go!"
--------------------
love
is watching my deaf son
try his hardest to get his fingers to work
in order to sign
 i.love.you
and then {moments} later,
running up to me,
in his pure silly aiden way,
to tell me with
spoken words
"I love you mom!"
--------------------
love
is
cochlear implants


and the
amazing gift
 they provide my deaf son to
 listen and speak
each and every day.

Thursday, February 2, 2012

don't forget ...


to water those rocks!

I came across this picture last night (taken last summer) and just had to share. I remember he was "helping" me water the flowers.

LOVE the INNOCENCE.


Saturday, January 7, 2012

in which Aiden becomes an actor

The other night Aiden's daddy was laying with him to get him to sleep, 
(yes, this is an eVeRy night thing. yes, I know, it's ridiculous. don't think we like it
whole separate post in itself
don't judge.)
anyway, after nearly an hour of Aiden tossing and turning and laying this way and that and flipping and flopping and kicking his dad in the face I'm sure more than once - you get the picture (and again, an every night thing), he sits up, looks at his daddy and says (of course no CIs since he's SUPPOSED to be sleeping at this point),

"Daddy, I need bucket!"

and proceeds to make these gawd awful, completely fake, gagging sounds like he's about to puke.
So dad rushes him into the bathroom and Aiden says,

"Shirt dirty, take it off!"

and again, proceeds to make the same, almost funny, gagging sounds like he's about to puke then looks up helplessly at his daddy and says,

"I sick. No school, stay home mommy."

to which he was brought downstairs to be by his mommy (and get his CIs on), grinning ear to ear because he knew the great performance he just gave.

and because I am a complete sucker, 
and because he's my baby AND only three years old, 
I let him stay home the next day.

does this look sick to you?


oh well.

we snuggled on the couch, played some Mario Kart, had lunch with daddy (where all the ladies love all over him and give him tons of chocolate AND he gets to sit and swirl around in daddies big office chair while watching Mickey Mouse on his computer) ... 

but it wasn't all full of fun and games. I actually made him choose a letter to practice for a mini speech session with mom. any letter we were working on, his choice. 

"I want p sound mom."

and he actually always has FUN with it ...


probably because of the yummy m&m treats.




Wednesday, December 7, 2011

the orange m&m

We've been working very hard at some certain sounds Aiden has difficulty with - such as /w/, /f/, /n/, /p/ and /sh/. He's using them, a lot of times pretty clearly, but still has some challenges as they can sound weak or jumbled depending on placement (beginning, middle, end) and/or with certain sounds combined with them (especially if /oo/ or /ow/ follow the consonant) - oh, and he's three.

The one that is SO difficult for him is that dreaded /f/. FUdge. It's so funny too, since his one tooth was pulled, he walks around with the other tooth over his bottom lip all.the.time, which you think would be great for producing that hard yucky /f/ sound, but nope, he blows out of his nose instead of his mouth and it comes out as a nasally, lot of air through nose /p/. He had it for awhile, and sometimes still does, so either we're trying too hard, or it's time for another mapping. (which we have in a few days since he's started dropping endings and sounding a little more slurry than usual).

We always start with the sound alone (for ex. /w/), do some syllable play with it (wa, wo, we, wi, woo, wow, wa-wo, we-wa, wi-woo etc. which btw is GREAT for his minor apraxia/motor planning challenges too), use the sound in isolated words (wagon, white, witch), two words together (white witch, where's Waldo), and then in short sentences (which has been GREAT for helping him expand his sentence, voice control, and clarity of speech in sentences). Each step depends on the success of the previous step in order to move on so he doesn't get frustrated and always feels successful. 

So of course, I've been video taping to watch his progress. 

(OH, 
if you're like me, when you're trying to come up with words on your own that begin with a certain letter, you can never think of more than TWO. ok, maybe three. But then to think of words where the sound is in the middle or end - whatever - I spend more time thinking than Aiden does practicing. Plus, who doesn't like easy, new, and FREE ideas, especially when it comes to something boring like practicing articulation. So of course I'm sharing ...

THIS site, with all kinds of WORKSHEETS, that I stumbled across the other day. she even posts tips on how to work with a certain sound. 

love it. and so does Aiden.

better yet, just saw this post. IT'S ON THE ipad! speech therapy on the go. 

oh, and m&ms are always helpful too.
(gotta say, he's silly throughout - especially in the end with that dang orange m&m near the end. love this kid.)

Tuesday, July 12, 2011

JTC - A Letter to Aiden - Days 1 & 2


I am in complete awe. This place is AMAZING. What makes it that way are the people. The teachers and the staff are absolutely phenomenal; what completes it, are the families who come from AROUND THE WORLD. Each family with their own story, their own journey, their own challenges and advice ... ALL with a similar means to an end.

I talk and I share, but even more so though, I do what I work so hard at teaching my deaf child to do, I LISTEN. I've thought about how to share this amazing journey, and all I keep coming back to, is that I want this to be my words to Aiden. So I'm going to mix it between writing him letters, through this blog, and documenting key points to share. One day I hope he'll read this and understand how much of an impact three small weeks can have.

In these letters though, I will highlight some key points that may help some of you as well. If there's anything I've learned in this journey, is that we are not alone. We have to help each other.

Dear Aiden,
Four days ago I packed up many bags to embark on a journey across the good ol' US of A with you and your sister. I knew from reading other's stories, that I, as your mother, needed this, not only for you, but for myself, and our family. This place is amazing, and in the two short days we've been here, it has already impacted our lives.

Your daddy and I decided to bring you here for further evaluations, for a second (and truly a third or fourth) opinion from professionals who have been working with deaf/hoh children for many, many years (over 60 years I believe). We wanted to learn not only from these professionals, but even more so, from the families who travel from around the world with a similar goal for their children.

You have been hearing now for two years and four months, and every single day you amaze us. We still have our worries, and honestly, we probably always will. We came here to get a fresh perspective, to learn how to best help YOU, because YOU have your own story, your own journey, and we're searching for unanswered questions; answers to questions to help us help you soar.

I knew coming here would mean meeting families from around the world. AROUND THE WORLD. What I didn't know, is how much these families would effect me, even in two short days of being with them. It has already been a roller coaster of emotions as I have sat and listened to each their stories, each of their struggles. Every story is different, yet the same. Every story though, has the same plea, to help them better help their child, to reach out to find answers, and understand, and learn ... not just about learning to listen and speak in general, but learning to listen and speak in EACH.AND.EVERY. INDIVIDUAL SITUATION.

SO, what do I want you to remember from the past few days? Here are my highlights:
  • You LOVED the plane ride! We were up at the crack of dawn to catch a 6:30am flight out of Cleveland, with an hour layover in DFW, until we finally arrived in California at 10:40 a.m. - (three hour time change = one tired mommy and two hyped up kids). Oh, and by the way, the only time you slept was 15 minutes before we were due to land in LA. Nice.
  • We're staying in university apartments, yes, where college kids stay during the school year. Makes me want to go back to the day. So much fun, so little luxury. No tv, no microwave, old carpet, and twin beds. The only thing I'm missing is the keg (nevermind that). I pushed our twin beds together though to make a king size bed for all of us to sleep together. Perfect.
  • Again, families are here from around the world - France, UK, Canada, UAE, New Zealand, and all around the United States. The staff at John Tracy says this is one of their biggest groups with so many spouses together and one of their biggest sibling groups ever. Although your daddy is not with us right now, he will be here soon. I gotta say, it's great to hear all these dads talk and open up; you'll understand why I say that one day and I wish your dad could be here now.
  • Kailyn ventured with us. I wanted to bring Ryan too, but, at 14, he was too old for the sibling group (age 12 is the cut-off), and they wouldn't allow him to participate in the parent classes. It was hard to embark on this without him. He's with daddy for a couple weeks, then heading to Texas to visit friends for a week. He assured me he'd rather be in Texas than here without much to do. Your sister has been QUITE.THE.TROOPER. I am SO proud of her and all she has done to step up and help, both of us. You my son, are lucky to have her, and so am I.
  • One of the BEST things about this whole trip is that we are here with your friend Thomas and his mom. I met her before we left Texas, when you and Thomas were just a few months old. We only met once and instantly connected, we were all we had. We kept in touch through email and many therapeutic phone calls. Three years later, we're all here together, getting to truly know each other, although it feels like I've known them forever. and Thomas has a sister close to your sister's age and of course they're girls and already best buds. I know a time will come where we'll all be together again and you and Thomas will be up all night playing video games and talking nonstop while your moms sit and laugh about all we went through to get you both to hear and speak and now can't get you to shut-up. ; )
  • Your first day of class was great. You didn't have any separation issues and you joined right in. You are always shy, and don't like to use your words as much around new situations, but your teacher Betty told me you had good conversational speech with another little boy in your class. I think it's the perfect fit for you.
  • By day two, you already knew a lot of the kids names in your class, your teacher's name, and one of the teacher's aide's names. I'm so proud of you! Thank you teachers for making an imitation booklet of "Brown Bear, Brown Bear" with the teacher's and kid's pictures.
  • Mommy is worn.out. Not only from the trip and three hour time change and the stress and the overwhelming sense of just being here, but even more so, from meeting so many families, and hearing so many stories. The stories and the whole atmosphere has been emotionally draining ... in a very emotional happy kinda way.
  • I miss your brother Ryan and I wish so bad he was here. One of the things I've learned throughout your short three years of life, is this isn't just your journey, it's our family's journey. Being here without Ryan, and your dad for a couple of weeks, seems incomplete. Dad will be here soon, I just wish I would've pushed more for Ryan to be here as well. As much as he doesn't admit it, this journey greatly affects him, it's one of my biggest struggles. Just another reason we're here. I really miss him.
The biggest thing that sticks in my mind from the past two days, "We want to learn from you - the parents, because you (the parents) are the true professionals." Do you know how little I've heard that throughout this journey?!? The staff here has repeated this over and over again. They are one of very few professionals who have ever admitted to NOT knowing MY child better than I do; the only ones who have told me,

"The parent is the most important team member."

Amen to that.

Other key points I took keen note to are:
  • The staff is here to help you figure out the challenges holding your child back AND their strengths to help them overcome these challenges.
  • The staff is here to work as a team (OT, family/child/marriage counselors, speech/language therapists, teachers of the deaf AND the parent) to come up with a plan specifically tailored for YOUR CHILD - not a "one size fits most" type of plan. They will look at social/emotional, sensory and motor, communication, self-help, and cognitive abilities.
More than anything though Aiden, I want you to know that I think you are such a trooper. I see that your hearing loss does not hold you back and that you do not give up until you get your desired results. You my son, are SIMPLY.AMAZING. and I couldn't be more proud.

To end, I have to quote from your sister,

"I'm so glad Aiden is deaf."

to which I looked at her, with a smile, because I knew exactly what she meant.

"Because if he wasn't deaf mom, we would never be here in California learning and making all these great friendships from all over the world."

What a great life experience you've brought to many honey. and I wouldn't change anything about you for the world.

Friday, May 27, 2011

for the LOVE of brothers

one of my favorites of my boys

Last night as I was cleaning up the dinner dishes,
Ryan and his girlfriend, Anna,
were playing with Aiden in the living room.
Aiden ADORES Anna (or "nana" as he calls her).
He adores his brother too, BUT,
when Anna's around, he's all about the girls.
SO cute.

Out of the blue, I hear Aiden yell at Ryan,

"Ryan stop! No mommy's phone!"

count them - FIVE words - TOGETHER.
each one of them, CLEAR.AS.DAY.
an AMAZING possessive.
and exclamation points galore.

WAY TO GO BUDDY!

He knew Ryan wasn't supposed to have my phone without asking,
let everyone know it,
and marched it right back over to me.

Actually, he's been onto Ryan a lot lately,
(ryan loves to mess with him),
so Aiden's phrase of the month has been,

"Ryan, please stop!"

Ryan's been feeling the wrath of Aiden lately.

Later that night, after Kailyn was through reading
Aiden his bedtime books,
the four of us sat in Aiden's room chit-chatting.
Aiden ran over to his brother,
jumped on his belly, threw his arms around Ryan's neck,
planted a HUGE kiss on his cheek, and said,

"I wuv you Ryan!"

Needless to say, we all went to bed
smiling ear to ear.
especially Ryan.
**LOVE**

Thursday, May 5, 2011

The Toothless Wonder

When Aiden's right top front tooth came in, it had a little brown spot on it. Since my oldest son's tooth did the same thing, (and I was told it was only a discoloration on the tooth), I didn't think much of it. His pediatrician confirmed my lack of worry. Unlike Ryan's though (who has never even had a cavity), Aiden's started to decay and part of his tooth broke away.

In preparation for the dentist, I first took him with the rest of us for our six month cleaning. I let him sit in the big chair and then held him as our family dentist looked in his mouth. She said it could have happened from an antibiotic I took while pregnant, decalcification in the tooth before it even came in, or for no explainable reason, and referred us to a pediatric dentist.

practicing his "ah's" before the dentist comes in

After his quick visit, I talked to him for a couple weeks about the dentist. We'd look at pictures on the Internet, we'd practice by laying on the couch and saying "ahhhh", and then we'd look at more pictures (and when there was a picture of a little boy not opening his mouth, Aiden would tell him, "no, no! say ahhhh!") He was all ready today for our visit and he did WONDERFULLY.


He didn't want to sit in the mini chair by himself, so he sat on my lap and watched Chuggington above him. Everything the dentist asked Aiden to do, he did immediately. They even x-rayed his front teeth, which they told him to "bite down on it (the film) like a cracker and hold it tight with your teeth.", and he did it twice without me having to say a word.

We had two choices with the "boo-boo tooth": 1) cap it - which would've entailed scraping it out, filling it, possible root canal, then capping it, which meant SEDATION which could take up to an hour or 2) pull it using a little numbing gel and a small shot which would take a total of FIVE minutes.

The tooth fairy is coming a little early.

He sat in my lap. He couldn't see me. I held his hands in mine. I was reassured knowing that even though he couldn't see me, he could HEAR me. I was able to talk to him and COMFORT him during the whole five minute, which seemed like forever, process. and he did great. Definitely some tears, but he didn't fight it. Once again, so thankful for his cochlear implants and the gift they give. I couldn't imagine going through this without them.

and now we have,

our toothless wonder.

Of course we went for ice cream and got a balloon right after. I just pray this visit doesn't ruin the whole dental experience for our next visit, but he'll talk about the experience without a problem, which is definitely a good sign.

Tuesday, April 26, 2011

Listening, Language, and Speech Development: 2 Years Hearing

I haven't posted a speech sample in quite awhile, or really, even given an update on Aiden's language development in quite awhile. I don't have any "official" scores from standardized testing, BUT I do have my "mommy" thoughts, (and a video clip at the end), which I think, are actually more "official" than any test.

As any therapist or teacher starts a meeting with parents, they usually start with the strong points (and if they don't, I'd find a new one) and Aiden has many, but here are a few (or five).

1) Aiden is a genius. Seriously. Ok, maybe not a genius, and I know he's my kid, but the boy is mr.smarty.pants. He has this photographic memory that is utterly scary. He picks up on new concepts very quickly, which puts my mind more at ease because for a word to become part of a CI child's comprehensive vocabulary, they typically need to be exposed to it 100 plus times.

2) Receptively, he is doing phenomenally. He listens better than his hearing brother and sister (mainly because they choose to only have selective hearing).

3) Expressively, he's doing pretty good. His vocabulary list of what he says comprehensively is huge. I don't track it anymore because he's picking up on new words so quickly. He knows nouns, verbs, a good handful of adjectives, prepositions, articles, plurals, etc. and uses pretty much all of them in the proper context. He does a pretty good job enunciating single words or two words together. He's communicating his needs and wants and is definitely vocal. BUT .... (list of "buts" to come after all the non-worries).

4) He does a great job discriminating different environmental sounds and has great auditory comprehension skills all around.

5) his voice quality is good. There are times I worry about him sounding a bit nasally (which could mean he's getting too much high frequency input), but I keep my mind at ease through his AVT and his school teachers/therapists that tell me he has wonderful voice quality. He also has no problem imitating different sound durations (being able to hold a long sound - i.e. baaaaaaaa vs. a multi-syllabic sound ba-ba-ba. Six months ago, this was very hard for him. He could hold a long sound for a short time and only repeat up to two-syllable short sounds - ba-ba, which had a lot to do with his breath control and his low tone) and different tonal ranges (deep vs. high, whisper vs. scream - which screaming has become his newest favorite thing to do).

Now onto the "buts". Don't get me wrong, I believe Aiden is coming along WONDERFULLY. I really do. and how positive is it that he's speaking at all! BUT, in the same breath, I have my worries. This journey definitely comes with struggles and roadblocks, everyone's is different, but nothing we won't conquer.

Here are my mommy observations:

1) Aiden's just not much of a talker (except in church). While he plays, he talks to himself, as he walks around the house, he talks. So I should say, he's not much of a conversationalist (I know, it seems like a lot to ask). He's almost like his mind is constantly racing to stop and just talk. He's not one to ask questions (yet) and doesn't have a lot of conversational speech going on. He is just starting to answer simple "w" and how type questions. He's definitely mastered the "yes/no" question asking phase and has a perfect sounding "yes" and "no" (this step typically has to come before they'll start answering the "w" questions). Right now he does a lot of imitating, almost as if he's gotten too used to all of us modeling everything for him. The good thing about this though is he imitates me when I expand on his one-two word phrases. For example, he'll say, "wow truck!" and I'll say, "I see the truck. It's a big yellow dump truck!" and he'll repeat back, "see yewow dump truck!" He's getting there.

2.) Most of the time he talks in one to two word phrases, but we're starting to hear him put three and four words together more and more and speak more directly with us. The other night he asked me, "Mommy, bears please?" (he wanted to watch the three little bears on my computer) and he asked WITH the proper intonation so I knew it was a question. this was definitely a first (usually he would say, "bears mommy" or just simply, "bears.") my eyes leaked.

3) When he does combine more than two words, his articulation gets weak and jumbled, as if he's mumbling (he does this too with a word that has more than two syllables). We understand him, but a stranger walking down the street would probably only pick up on the first word or two. Our immediate family (gmas, aunts, uncles etc) is starting to understand him more though and have shared how he's come such a long way in the past six months. He sings songs, and I hear that tune in his voice (thank you God!), but it's hard to understand what it is he's singing. His speech can sometimes sound "lazy", if that makes sense.

4) He has trouble with his bilabials (/p/, /b/, /m/, /w/ (which is caused by low tone in his cheeks and lips) among a few other early sounds he should already have (like /t/ and /d/). (NOTE: I'm not including sounds that even a typical hearing three year old wouldn't quite have yet, like /f/ or /k/ etc. What's funny though is Aiden says a perfect /s/ and /sh/ and most of the other s blends.) There are times he says these perfectly - sometimes in isolation as when we do CV (consonant-vowel) syllable practice, and sometimes just in the beginning, middle, and/or end, depending on the word. For example, he says a PERFECT, clear as day, melt your heart, "mommy", but milk, is still "Nilk". He also says a PERFECT "baby", yet when he calls our dog Bella, it's "Dewa". The /p/, is usually perfect at the end of words (pop is "op", stop is "stop") but is completely absent in the beginning and middle of words (no matter how hard I try, I cannot get the boy to say apple, it's "ah-le".) We know he can repeat these sounds (so it's most likely not a mapping issue), but when paired with different sounds, it's either easy or difficult (like, "boo" and "moo" are very hard for him to say - yet he repeats a perfect "oo" or "ba" or "ma" in isolation). This not only has to do with poor lip closure, but also breath control and having to put multiple steps together (in the brain and orally) to produce these (see #5). Even in all this, he says "chocolate" pretty close to perfect. Go figure.

5) He has motor planning issues. THIS site provides brief examples of the different speech motor planning disorders. Aiden definitely fits into the "Sensory Processing and Motor Planning" and "Movement Execution" areas. I believe once we get our arms around this and his oral motor (he uses his teeth to talk a lot), he'll start taking off, which will then lead to more conversational type speech.

So yes, Aiden is definitely hearing and UNDERSTANDING us. He is also speaking, with some articulation set backs (oral motor) and some trouble putting what he knows together in order to voice his thoughts and create simple conversation (motor planning). He gets it though, and he'll get there.

Yes, I am SO PROUD of him and how far he's come.

Yes, I'm still worried, I'm sure to an extent I always will be, but I will not lower my expectations for him.

and yes, I know that one day Aiden will get there, and this is HIS journey, these are HIS steps. He gets it (he really is mr.smarty.pants) and he's WELL on his way, at HIS own pace.

Here's the latest speech sample I have.

Note: I had a lot of trouble with Overstream, so I included the video uncaptioned and captioned. I hope one or the other work. and don't forget to turn off the music!

This video was taken about a month ago, right after his third birthday (the day we were going to celebrate it though), and about two weeks after his second hearing birthday.

(captioned)