OUR JOURNEY

Ten on Tuesday

2012-01-24T22:22:00.002-06:00

1. Tomorrow we start another new AVT (auditory verbal therapy) adventure. We will still see Dr. Don every 2-3 months, but due to not being able to see him weekly (he's 2 hours away and if you haven't noticed, gas prices are CrAzY - especially with a SUV), we are starting weekly teleconferencing sessions with a new AVT and tomorrow we're heading to Akron so Aiden can meet his new friend and get everything set up. As Aiden said tonight, "It not Dr. Don." No buddy, not Dr. Don, but I'm sure it'll still be a lot of fun!

2. I am very excited to get this going. There is something about weekly sessions. I thought that once to twice a month would be okay, but there truly is something about the whole accountability thing. I'm really hoping the teleconferencing thing works for us, because between all of our kid's crazy schedules, this seems to fit in so much better.

3. To prepare for tomorrow's session with our new AVT, I made up a packet of information on Aiden, similar to the booklet I put together for our first IEP. I added in recent language samples, a chart of past language test scores, and all of his most recent evaluations (mainly from JTC).

4. As I went through Aiden's audiograms and made copies, I couldn't believe how much he has fluctuated from map to map. At one point last year, he tested at 65 in the low frequencies! That's insane. His maps have had such huge fluctuations in the past two years, it's no wonder my baby is still behind expressively. We have had a pretty stable map about nine to twelve months now, but still not consistently at 20-25db across all frequencies as I'd like to see. He still drops to 35-40db here and there, hence the reason of seeing our audiologist every three months.

5. He is still making good strides this year in all areas, but he definitely still has his off days. There are some days where he consistently loses his balance and those same days I can barely understand a word he says. Something's missing and I just can't put my finger on it. I voiced my concerns with his PT, SLP, and OT and all three of them agreed with me and suggested he be seen by a neurologist, "just to see and rule everything out" to make sure nothing else is going on. They all see both sides of him. So the referral was sent in and the appt made - for MAY. wow.

6. Do any of you/your children have a map with a higher pulse width? I don't fully understand it, but at Aiden's last mapping appointment (in December), a wider pulse width was needed to obtain NRTs on his right ear (which we've always had trouble getting NRTs on). His audiologist then proceeded to create and try out a new map with this slight increase in pulse width (increased to 37). As she adjusted it, Aiden was fine, but by the end he was burying his head in my chest and not liking it what-so-ever. We immediately turned it off and went back to square one (pulse width of 25) and adjusted based on phoneme repetition. Just curious. We go back next month for booth testing.

7. I LOVE this picture of my silly boy.

8. I CHERISH our "therapy Thursdays" together. We start out with an OT session and then the rest of the day is just ours. I really need to blog his OT sessions (and AMAZING therapist) - I have so much to share. We have noticed though that when he comes in with "slush mouth" (jumbled speech), within fifteen minutes of heavy work, he's speaking a lot crisper. He LOVES his OT and is quite the performer for her!

9. Took this picture of a beautiful sunrise the other morning from K's bedroom window. Bliss.

10. that's it. hope you enjoy your week. i will. i get two days with my boy ... tomorrow and thursday! As Aiden says, "No school tomorrow. Stay home mommy!" Ya buddy!!! i.love.it!

in which I talk about K ...

2012-01-21T16:52:00.000-06:00

one of my biggest concerns has always been,

making sure my two oldest children are not

left behind as I continuously advocate for aiden

and all of his needs.

even though aiden isn't quite caught up expressively with his hearing peers,

even though aiden is still having some pretty off balance days,

even though i am searching for a new school for him,

I have had to recently focus the majority of my energy on

my two older loves.

and give myself frequent reminders that,

aiden's ok. his school is ok. his technology is on track.

his OT his pure amazingness.

we're starting a new AV program and

we continue to work hard with him at home.

the majority of my

mom ENERGY though,

has had to be spent else where.

and as I'm not happy with all of aiden's current situation,

I've had to remind myself,

he's OKAY right now. I am not SUPERmom.

and as my mom frequently reminds me,

step by step, day by day.

I won't get into my challenges with my first born,

my lovely teenager, who's had his own struggles,

and has needed his mom, not partly, but full on,

and is learning to find "who he is" in a more positive way.

raising a teenager is.not easy.

but the sweet little boy i raised, is still there.

and to realize I haven't "lost" him,

means the world.

i SO love him, all the way

{to the moon ... and back}.

and now that I know he's okay,
it's time to excerpt the same energy to my girl.

(whom this post is mainly about)

my FULL of LIFE,

QUICK WITTED,

with an AMAZING sense of humor,

and a SMILE that lights up any room,

shy in public, but a LION at home.

HEART of gold,

would befriend everyone and anyone,

(just don't cross her).

has THE most contagious LAUGH,

SILLY beyond all get out,

full of HEART,

GIRL.
she makes me SMILE.
(most of) all.the.time.

and for the past couple years I've been fighting.

to understand how she learns,
and can be successful,
and to make sure everyone understands the same,

because she learns in such a different way;
she's artistic, hands-on, visual;

has ADD,

a low working memory,

and they just don't get it.

(note: working memory is your executive functioning part of the brain - it's where you go first

to do ANY and EVERYthing. one mom gave this excellent example: So imagine your daughter is in class and they tell the kids to complete their study guide. Your daughter might remember she has to get her book out, but she might not know the last time she completed a study guide, she had to first go to the glossary in the back of the book to first get the definition, and or get the page number where that definition is at, and then flip to that page, and then scan for that word and then viola, she will have the answer! See how many steps are involved in just the most simple thing(s)? Well imagine if she cant remember any or some of that. She sees everyone else quickly pull out their book and start working, and she is sorta lost. She doesn't want to look stupid, so she's trying to 'act' like she knows what she is doing-probably panicking inside because now she is falling behind, and someone might "see" that she doesn't know what she's doing, etc- so no surprise that her self esteem is low - mostly because it is self induced "how come i don't know what to do and everyone else does? I must be stupid.")

and this is exactly how K thinks and what she goes through.

she hides it on the outside,

but confides in me, it's how she sometimes feels

on the inside.
and it breaks my heart ...
because she has such a heart of gold,
and such the personality.

last year, after fighting the district for over a year, we finally got her on an iep.

they couldn't understand why I would want her "labeled."

(this is what i'm dealing with).

I'm still learning about how she learns.

how her mind works.

so now i'm fighting to get her goals firmed up that

better meet HER NEEDS,

not some generic goals that the district

can get by without truly doing a damn thing besides "checking for understanding". "preferential seating", and "signing her agenda book".

luckily last year, she had a teacher who modified and worked with K

to meet HER needs, and K was successful. she was positive about herself.

this year, not as much.

so back to square one - why does everything have to be such a fight?

why can't ALL teachers do what they're supposed to do

and realize not every student is "typical".
as a teacher, we constantly want our students to think "outside the box",
and sometimes, us teachers, need to think, "outside the box" too.

K is very much a VISUAL and TACTILE learner,

not to mention she needs frequent reminders and guidance of what to do,

what to bring home to study,
and small reminders of how AMAZING she is definitely wouldn't hurt.

she's smart. very smart. it's a matter of getting it out of her, in a little different way,

with a little extra patience, and a little extra time.

I met with the school psychologist yesterday,

with my list of ideas for goals, to understand even better

just how my daughter learns and to figure out

how WE, as a team, can communicate to everyone on her team,

and TEACH them, how SHE learns best,

and how HER mind works.

my happy go lucky girl struggles.

and it's bringing down her self esteem,

and I refuse to let this happen.

you know what he told me?

"She's an average student who just needs to work harder than the others."

I took a deep breath.

I then inquired about a computer program for kids

with low working memories, (that our insurance won't cover)

a program that would help her brain work to it's full potential AND improve her working memory.

and his reply?

"I'm researching them. Money's tight though. You understand that right?"

to which I chuckled sarcastically back,

"Of course. and YOU understand she is MY child right?
Who can I contact to help your efforts move along more quickly
because my daughter NEEDS this now."

then I left, letting them make me feel, once again,
like some crazed mom who's trying to make her child,
something's she's not. and had to remind myself,
I'm not the one NOT getting it.
I know MY daughter.
If she doesn't have me, who does she have?
I.won't.stop.

and God works in mysterious ways.

That same afternoon, I received a phone call from our county's developmental board of disabilities.

(the same AMAZING board who provides funds to help aiden receive his wonderful OT

services that insurance won't pay for,

and other top notch services districts won't provide.

they want to HELP parents, HELP their child - imagine that).

a few weeks back, I took a long shot and sent in all of K's paperwork

(ETR, IEP, past neuropsych evals, doctor's reports etc)

with the thought that maybe, just maybe they can help me help her,

maybe they'll see what I've been trying to figure out on my own,

but also thought, she'll never qualify. funds are tight.

but she did.

it was a bitterSWEET phone call.

because honestly, who truly wants to be in a position where their child DOES qualify,

yet when you're fighting tooth and nail for people to see what you see,
to help you understand what you can't quite put your thumb on,

and in turn they make you seem like some crazed woman,

because your child "is average and just needs to work harder", and

then, BOOM. someone DOES see it?.?
I'm not crazy.

No, not crazy.

I'm a mom.

who knows her child,

and knows she needs a little more than your average joe.

because she's not average.

she's ABOVE average in all ways in my book.

and I'll never stop fighting for her,
I won't lower my expectations,

and will never quit fighting for her and what SHE NEEDS,

to be the AMAZING person she is.

in her own AMAZING way.

then I poured myself a glass of wine.
and cried a few of those "damn I hate she struggles, hate/love she qualified, what a big step this is" tears.
and it gave me the perfect amount of energy
to keep on,
KEEPING ON.

CI Brand Choice

2012-01-13T11:05:00.001-06:00

A few weeks ago, a fellow CI momma blogger, who is pure amazingness, made this comment on FB about the picture below:

"...all three manufacturers ... three little boys ... makes my heart smile. Such a fuss is often made about which company is better. But this photo proves it's all the same, really. I just love it."

I took this during our trip to John Tracy Clinic this past summer. I love this shot because these boys created a great friendship while there and how completely awesome is it that everywhere you looked there were hearing aids and cochlear implants!?! There was no "different".

I woke up this morning and saw there was a discussion on CiCircle about brand choice. No, I'm not going to get into this long post about all three cochlear implant brands. I think when it comes to brand choice, YOU have to feel good, feel comfortable, and know in your heart you are making the right choice for your child, no matter which brand it is.

Melissa, (who is a phenomenal resource, well respected in the CI community, and mom to these two amazing girls both whom are bilaterally implanted), said it best,

"What's far more important than brand choice is what you do afterwards in terms of helping your son learn to make sense of the sound from his CI. That will determine your child's success, not brand choice. There are definitely differences in reliability, customer service, and all the factors that parents mention. However, they are minor differences, non of which will ultimately affect how well your son does, and where one has an edge another may have an edge in another factor. I remember our audiologist telling us that she had three one-year-old little boys all implanted at the same time, each with one of the three brands, and all were doing equally well. So if you're happy with your choice, then go with it and don't look back. Look forward instead."

I'm not at all downplaying how stressful it can be to choose a brand, believe me, I've been there (and sometimes, for different medical purposes, one brand may be a better fit than the others). When it came to choosing the CI company we would go with for Aiden, we leaned towards Cochlear from the get go. Today, I can't even pinpoint the exact reasons why. We did all the extensive research on all three brands, made a spreadsheet comparing and contrasting each, and what it came down to, was following our heart and going with what we felt most comfortable with. No regrets.

Take a look around the Internet at different cochlear implant blogs - you will find success story after success story for each brand of CI (I have listed just a couple for each brand below). The common factor? Parents with extreme dedication to teach their deaf child to listen and speak.

Advanced Bionics

Med-El

Cochlear

bitter{SWEET}

2012-01-11T22:22:00.001-06:00

My oldest son interviewed me for his Theology class. I was asked what seemed like three simple, yet were very thought provoking, questions. In a nutshell, I had to speak of a miracle that has impacted my life. I've been blessed, so far, and never had to confront a life saving accident, or a loved one surviving cancer who had a small chance of survival, or being told I'd never get pregnant, etc- miracles many speak of. If I am ever confronted with such a situation, I hope it becomes another miracle story I can tell.

My miracle though, has to do with hearing.

my deaf child. hearing.

I was brought back to tell our story from the beginning. I didn't have to get into a lot of detail, but how could I not, or at least how could I not let my mind go there. and as this brain of mine turned each corner, the eensiest memory would pop up, tiny-maybe, but for each of these I could tell you each and every small detail of the situation. These are a few of the small moments that God impacted my life in getting through the first days:

- like the day Aiden didn't pass the "come back to the hospital in two weeks and we'll try again because we're sure it's just fluid" test. and he didn't pass. again. we were sent home with yet another appointment. I went home a mess, feeling sorry for myself, crying, and wondering "why him!" At the time, it was one thing after the other in our life and I couldn't take much more. I was SO angry. I wanted to scream out, "do anything to me, but leave my child alone!" That same day, as I flipped through the newspaper, I came across the obituaries and the baby photo drew my eyes to read about Aidan. Born the same exact day as my Aiden, who didn't live past his first two weeks of life. and the tears that flowed were for this baby, his mother, his family. I held my baby a bit tighter, longer, thankful he was in my arms.

-or holding him in this dark, little room as they tried one thing, and then another, and then yet another before the audiologist finally went and got another audiologist who tried each and every step all over again - all without saying a word. I can still see the screen, feel my deep breaths and heart pounding against my chest. and then the words, "You're son has profound hearing loss ...". It was the longest ride home. That same day of receiving "the news", I had to go on with life and pick up some groceries. All I wanted to do was get home and drink a ~~glass~~ bottle of wine. I couldn't get home fast enough. Then I was stopped behind a bus. As I sat there frustrated, I watched how the bus driver got out and wheeled off a boy, about 10, all body parts strapped down. and I watched the mom come to meet him and stroke his hair then kiss him on the cheek. I remember this like it was yesterday. yes, my son was deaf, but it was a big reminder, things aren't always greener. Again, I went home and held my baby a little tighter, a little longer.

- or the day I received an email from a coworker to let me know she was talking to a friend who got this website from a friend of a family member of a friend type situation. It was Landon's blog. and that same day, I found Toes, and Drew, and Christian. It was my turning point. It was then that I started realizing, enough blubbering, time to get busy. and from there, I found countless other stories, most of whom I have created wonderful friendships with. My CI/hoh mommas/daddies have had such a huge impact on this journey, and I can't imagine this journey without them.

- or the day I got a phone call and another situation of knowing a friend of a friend that knew of this professor at a local university that worked with deaf children. My first phone call to her was very informational as I tried to hold it all together, nervous what to say, as at that point I didn't know my head from my ass. She taught grad students at that point, not clients. But I called her back and in pure desperation said, "I need you to HELP ME teach my deaf child to hear and speak." she fit me in that Friday and every other Friday there after until we left Texas. she opened my world to this thing called "Auditory Verbal Therapy". {smile}.

- or the day I was researching CI surgeons and found the one I wanted to perform Aiden's surgery; unfortunately he was over 3,000 miles away. Aiden was three months and we had little intention on leaving Texas. His CI team was pretty much set. It was one of those let's put this on our "wouldn't this be amazing" list ... and it was, because five months later my husband was offered a job out.of.the.blue 30 MILES from this surgeon's hospital. and when the CI coordinator called to let me know that out of the six surgeons there, we were assigned THE MAN (without any official requests), I bawled.

and of course I spoke of his surgery, his first (right ear) activation one week before his first birthday, his first word, how hard we've been working, how far he's come, how he'll always be deaf, his sweet voice, etc etc. Then we checked out Aiden's "One Year Hearing" video that Ryan is going to use as part of his presentation.

It was the little details remembered though, that kept sneaking in, making me tear up, and smile.

the small details that reminded me of what a MIRACLE this journey has been and how He guided me through many "I just want to stay in bed and cry" type days. how He showed me, in His own way, that things would be ok. He showed me how truly BLESSED I am at a time when my world was falling apart.

my deaf child hears. he speaks.

yes, my miracle.

We finished by talking about how some wouldn't consider it a miracle, but call it "science". and while I agree science is no doubt involved, I thank God for all the wonderful technology we have and even more so, for the inspirational, inquiring minds who research and study and seek ought that technology to someday FIND that "spark", that "something" they're looking for. For us, our miracle mind is Graeme Clark. I thank God for him and his amazingness all.the.time.

but sometimes you have to look past the "technology". and this interview made me realize all the little miracles this big miracle is made of. and sometimes it's the littlest things, that impact one the most.

Aiden was meant to hear and speak. We have been shown that, by Him, throughout our journey.

Matthew 11:15 - He who has ears, let him hear.

in which Aiden becomes an actor

2012-01-07T11:10:00.000-06:00

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.

the orange m&m

2011-12-07T21:33:00.001-06:00

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.)

Thankful

2011-11-23T08:11:00.001-06:00

my children.

i am so thankful God chose me to be their mommy.

each one makes me smile in a different way;

each of them have this crazy sense of humor and contagious laugh.

no matter the challenges that face us, I end the day

thanking God they are HAPPY, HEALTHY children who are FULL of LOVE.

and for that, I couldn't be more thankful.

my husband.

we celebrated 17 years of marriage this year. seven.teen.

i am so proud of us.

i am proud of him. he is a wonderful father and an even better husband.

we compliment each other.

i am thankful for all his hard work which allows me to watch my kids get on and off the bus.

i fell in love with him because he made me laugh ... he made me smile,

and he still does.

and for this, I am thankful.

my mom.

since my first memories, it was always me and my mom.

we were a team. partners. we made it through thick and thin together.

she taught me to be independent,

that i could do anything i set my heart out to do,

that no one could hold me back.

she is my rock. my hero.

she is also an amazing grandma

and has a heart of gold.

for her, i will always be thankful.

friendship.

i believe every friendship made throughout life is

a reason, a season, or a lifetime.

and i appreciate each one and the lessons learned.

i cherish hour plus phone calls

that take me away from reality.

i cherish dinners out, and long chats over a bottle of wine,

as each of us vent, cry, laugh.

i cherish my friends.

technology.

i don't know if i could get through the day without my apple products.

not only do they help me keep in touch with friends and family

from around the country - at home and on the go,

(and keep my kids busy when mom needs some quiet time),

technology has provided a means to knowing a new community within my life;

a community of people, whom most, i have never met, but come to love.

and for all my fellow hearing loss families,

i am beyond thankful.

cochlear implants.

speaking of technology,

i couldn't get through this list without mentioning CIs.

everyday as he gives me a hug and says "good morning mommy",

everyday as i hear him laugh with or yell at his brother and sister,

everyday as i hear his sweet little voice,

i thank God.

without these, i wouldn't of heard this morning,

"mommy i need help charge ds please"

seven words.

blessed.

my sister-in-laws.

i have two brothers. we're close, but what girl doesn't want a sister.

now i have many.

there's nothing better than heading up north

and spending the night chatting and laughing

and more times than not, (excuse my language), bitching, amongst each other.

another reason i'm thankful for my husband,

by marrying him i also inherited the sisters i never had.

memories of my dad.

even though it's been almost four years,

i still have tearful days of missing him dearly.

but not a day goes by that i don't think of him and smile.

as the years pass, i am thankful for being able to focus more on the memories,

instead of the loss.

and i will always be thankful for,

the father he was.

and last but certainly not least...

wine.

yep. SO thankful for wine.

not much more to say about that.

oh, and

chocolate.

HAPPY THANKSGIVING!

wordless wednesday

2011-11-16T07:39:00.001-06:00

newest fascination - pockets

ten on tuesday

2011-11-15T21:20:00.001-06:00

1. I can't believe I'm up past 10 pm. On the nights I lay with Aiden to get him to go to sleep (don't judge, bad habit, third child) I'm out right with him. On the nights I have off, once I say goodnight to K, I'm crawling in bed myself.

2. cRaZy past couple of weeks ...

3. We had my SIL's wedding a couple weekends ago. She was stunning, absolutely beautiful. Selfishly, one of my favorite parts was watching Aiden dance the night away. I've never seen him dance so much. Actually, outside of Laurie Berkner or mimicking his sister here and there, I don't think I've ever seen him truly GET DOWN . I was in Heaven.

4. Ryan had been complaining about his belly the past few weeks. I blew it off to "teenage boy eating habits". He came home from his Lacrosse game last Tuesday, scarfed down two bowls of chili, and went into complete pain mode. After giving him antacid type of meds, the pain kept getting worse and worse to the point I took him to the ER (last thing I wanted to do because I swore it was his teenage gut and at this point it was past 10 pm and WAY past my bedtime). Glad I listened to him. He had his appendix removed early the next morning and spent two days in the hospital.

5. The day Ryan got home from the hospital, Aiden got the flu. In three years, the boy has never really puked. All.night.long - he puked. Of course he did.

6. With #3 & #4, I had to cancel Aiden's IEP, which was just fine since I wasn't completely prepared. I know what goals he needs and I (hope) they won't fight me, but we (mom & dad) just have other thoughts in mind that we're still trying to work through. For now though, we forge forward with what we have, and know it's always nice to have options. It's now this Friday. Guess I know what I'll be working on tomorrow.

7. I need a vacation. then again, who doesn't?

8. Next weekend (yep, Thanksgiving weekend), I'm heading to Chi town with one of my favorite chics, my niece, and my all time favorite daughter for a girl's weekend. I think my mom may even join us. I am BEYOND excited (see #'s 3 & 4 above).

9. I'm pretty sure we're heading to my mom's for Christmas. I cannot wait to see my grandma & grandpa. I missed them this summer and I'm way overdue for morning coffee/gossip time with the best grandma in the whole.wide.world AND for 4pm Miller time with the most amazing man ever. and of course, i'm so excited to see my mommy too (and maybe actually get date night with another amazing man I know)!

10. It's almost 11 pm. Way past my bedtime, yet this peace and quiet time is beautiful.

10a - I have so much to catch up on with Aiden ... OT, speech, his bossy language, incidental learning ... so much to say. Guess I need to stay up past 8pm more often!!

2011-11-14T21:53:00.001-06:00

been busy

with my loves.

be back soon.

HaPpY HaLLoWeEn!

2011-11-02T08:59:00.001-05:00

Then

the goal was to get Aiden to point at the correct picture or item

as I said the word,

witch or ghost or bat or pumpkin,
to show us he could discriminate between the words,
and associate the word with the correct object.

it was a short seven months into his journey

to hear and speak.

He was 19 months old.

If we were lucky,

and we were,

we'd get a vocal "ee-ee-ee" for the witch

"oooo" for the ghost,

and "pa-pa-pa" for pumpkin.

in fact I remember being

ECSTATIC as he went a step further and called a pumpkin,
"uH-uN"

it was pure bliss.

Now

two years later,

three and a half years old,

two and a half years into his hearing journey,

he TOLD me he wanted to be a

"DOST"

for Halloween or a

"DIAHSOAR! ROAR!"

and proceeded to TELL me, every.single.day how a

"Jah-o-laher a face. eyes, nose, mouf"

and when I would ask,

"What is a JACK-O-LATERN without a face called?"

He would yell,

"Pumpkin!"

clear as day.

and he's added words like

scarecrow, skeleton, trick-or-treat, Halloween, costume, and scary.

This year on Halloween,

he RAN up to the doors, bag in hand,

and it was HIM I HEARD,
out of all the kids,

"TRIH-A-TREAT! oh, tank you!"

and my heart melted,

each.and.every.time.

HaPpY HaLLoWeEn!

More "Out of the Booth" Mapping

2011-10-27T09:15:00.000-05:00

I have so much to catch up on, I know, it's the story of my life, but for now ...

check out THIS POST by super mom Mel and her recent experience. Our stories are similar. Both our boys need frequent maps; both of us went through a long struggle of getting a stable map for our boys; both our boys SOAR from this out of the booth mapping.

Goes right along with our most recent "out of the booth" experience. Which by the way, continues to make a world of difference in Aiden's speech production!

and just a cute fall shot of my little monkey to end with on this rainy Thursday.

Happy Fall.

Ten on Tuesday

2011-10-18T21:38:00.001-05:00

1. My sister-in-law is AMAZING. She's married to my husband's "Irish twin" (they're 14 months apart). We share the same birthday. She's a teacher-of-the-deaf. She has been such a blessing in this journey and I cherish the relationship we've built and all her advice to me. I'm lucky to have her insight, her knowledge/expertise, and her love for Aiden all in one.

2. I spoke with this CI momma today. I love all the friendships I've built over the years. I've never had such close relationships with people without actually ever meeting them. There's something about talking to someone about that certain something and they just get it. One day, we will meet and our boys will play. We have that "cheese-head" link, there's no way we can't!

3. Today I sat and observed Aiden's class again - for a good two hours (he didn't know I was there). I'm preparing for his upcoming IEP and I want to fully understand what his classroom experience is and see him in action. Then I was invited to sit in a speech session with him. He didn't know I was coming, and when he walked in, his face lit up and he ran right to me with a big ol' "MOMMY!" Needless to say, we spent the rest of the afternoon together after that session.

4. Fall is here. I'm bummed though, because all the leaves started changing colors, which I absolutely LOVE, and the next weekend they were pretty much gone after the big wind storm we had. I was hoping for a lot more time of their beauty. I am looking forward to my upcoming field trip with Aiden's class though to the pumpkin farm! Fun times! Living in Texas for so long, I forgot how much I LOVE fall!

4. Parent-teacher conferences for Ryan = complete success. All of the teachers raved how respectful and what a nice young man he was. A few said their class was too easy for him and he needed to be bumped to honors. One said he was their favorite. One asked if he was on "a program"?!? Last year I would've understood this more, but when further questioned if he was talking about an IEP, the teacher answered, "Well ya, have you seen his handwriting?" So proud of my messy handwriting son who is kicking butt and taking names!

5. Kailyn's volleyball season is over. What an amazing program they put on. And by the end of it, she had a handful of serves that made it OVER the net - scoring a point, many bumps over the net - and scoring a point, and even a couple sets. AND she's become quite the defensive player this season in soccer. Best thing about all of it, she loved every minute of it.

6. Any day now I'm going to start a photograph of the day blog (or just add a tab to this blog). I LOVE photography and I've been playing around with my camera a lot. My dream is to have a successful photography business, but want/need to get some more practice under my belt. SO, I thought what better motivation than to take, edit, and post one picture a day. This way I figure I'll practice a certain technique every couple weeks, without feeling so overwhelmed with it all.

7. I'm having a hard time with this full day of school five days a week thing. I miss my baby. The other night he told me, "Mommy, Aiden's sick." (he has a cough), "stay wit mommy. No school." Okay. (heart melting and such a sucker).

8. OT has been AMAZING! I have so much NEW knowledge I never understood and so many NEW ideas to work with him on and so much NEW faith in the whole OT program. Miss Amie ROCKS. Aiden loves her. I love her. I have so much to share about it all.

9. Aiden is going through a monkey phase. Last night he insisted on "monkey top and monkey pants" for pjs. This morning he fought me to put on his shirt because he wanted a monkey shirt. So during our afternoon together, we ate pizza then went shopping for monkey shirts. Thanks to Old Navy's character shirts and Curious George, we didn't have to look far.

10. We live in the country. The few people who drive by, fly. Even with kids outside playing. We live on the corner. Today they pounded in the pole to put up our "Deaf Child in Area" sign. Our little po-dunk town had AMAZING turn around with no argument about putting up the sign what-so-ever. One of the five has a girlfriend who is Deaf. Aiden and I will be delivering some homemade goodies this week. So thankful.

A Walk Back Into Time

2011-10-15T22:14:00.001-05:00

Tonight we found two old video cameras. Not that we didn't know where they were.

Just didn't realize we weren't missing them until tonight.

My heart was taken back. You know, like when you hear a song on the radio

and it completely brings you back to the moment?

I was so scared.

and I didn't realize how scared I was,

until I was brought back to THOSE moments.

SO scared.

The days of trying to understand the words,

"It's probably just fluid" to,

"Your son has profound sensorineural hearing loss" to

not realizing that what this meant was "Your son is DEAF."

The days of pre-hearing aids to

the days of hearing aids. and all the buzzing. and pilot caps.

The days I wondered and worried.

wondered and worried and prayed.

The days of the unknown,

clinging to every ounce of HOPE.

HOPE he had hearing nerves.

HOPE he would be a good candidate for CIs.

HOPE one day I'd hear his laughter and he'd hear my "I love you's".

HOPE that ONE DAY he'd hear and speak.

HOPE that he would not be held back.

It brought me back to a time, not forgotten, yet left behind.

My stomach turned, tears rolled down my face,

as I watched myself performing AV strategies,

with a THREE month old

who probably didn't hear a word I said.

Yet, I smiled.

and cried some more,

then smiled.

Within minutes of watching, my heart dropped,

yet,

seconds later, filled with peace and happiness.

Because within those few moments of being brought back

to a time of the unknown,

it also proved to me,

JUST.HOW.FAR.WE'VE.COME.

every ounce of hard work.

every.single.day of reading book after book,

every.single.day of BELIEVING.

every.single.day of singing song after song,

and narrating every little thing I did,

every.single.day of working so hard to introduce as much

spoken language and listening opportunities as possible,

to our DEAF child,

made a difference.

because our DEAF child IS HEARING AND SPEAKING!

hearing.and.speaking.

and going back tonight, to real time

of what seems so long ago,

has made me realize,

JUST.HOW.FAR.HE'S COME.

just how much,

HE LOVES TO HEAR.

just how much,

HE TALKS!

just how much,

OF A TROOPER HE IS

because even with three plus years of appointment after appointment,

and still many more to come,

he continues to be one of the HAPPIEST kids I know.

and reminds me just how much this journey truly is

SIMPLY AMAZING.

Right after watching the videos, I put on Aiden's pajamas,

which I always take his CIs off and he can't hear a thing.

after pjs, we usually only put on one CI,

(to verify how he's hearing with that CI alone)

and for the first time ever I asked,

"Aiden, do you want just one CI?"

and he replied,

"No mommy, two please."

Working on Preliteracy Skills

2011-10-10T14:42:00.002-05:00

Since the day we found out Aiden was deaf, amongst many of the things we worried about, we worried about literacy skills. We started working on this right away by reading to him everyday. We were told by our first AVT to read, read, read, read. In fact, we were given the number TEN - yep, ten books a day. Of course we didn't get in a full ten everyday, but we tried, and even if we got to three, we felt good. Although we know this is important for ALL of our kids, we knew it was especially important for Aiden, as any child, who has challenges with speech and language, needs so much more help and encouragement on pre-literacy.

Aiden learned his alphabet pretty early on, around two to two and a half. We've also been very lucky that he has always shown a love for books, which I attribute to the 10-a-day rule. Experience books are another way to not only build language, but work on pre-literacy skills. I wrote all about our experience book HERE. With Aiden's interest in books, and his early learning of the alphabet, sparked his interest to take it to the next level, and with our help, he attached the sound to the letter and started to recognize that letters together, create words. About six to eight months ago, I noticed he was "reading". I would present certain words in writing, and he would find the picture to match - such as house, boy, star, ball, boy, cat, etc. THIS is a great book to practice this. In fact, we love all of Eric Carle books. Aiden can read THIS one by heart, which has also helped in elongating his sentences, learn his colors, put an adjective with a noun, and again, realize words have meaning.

So to take it even a step further, I started sounding out words for him, without a picture, and he would put the letter with the sound and hence, spell simple words. OR, we play the sound game, I say (CAR) and he tells me what letter the word starts with. I believe a lot of what he knows too, he has seen in books or heard in songs and nursery rhymes - again, a great reason to read, read, read and sing, sing, sing! In fact, Aiden learned how to spell his name and mommy from a song I changed up using our own names, from the Tune Ups CD which is a part of the Advanced Bionics Listening Room. Also, if you google pre-literacy, you will come up with a ton of websites with different ideas. This is a great website for some basic ideas and background on pre-literacy.

Our next step, rhyming words and words that are very close minus a letter (lie vs. light).

First, a sampling of his writing, which is a also a big part of literacy. He did this all on his own, without me spelling it for him. Notice the "y" in mommy is under his own name, which he realized he left off after he was done.

Here is video sampling of Aiden's pre-literacy skills. He gets a little silly, but that's always the fun part. I included a little extra for a small speech sample. He's a bit nasally, as he has a stuffy nose, which isn't unusual for him. AND I had no clue how to get that dang "directed by" off the end. oy.
BONUS - with him voicing the sound each letter makes, I get a good sense that he's hearing it correctly. This all goes back to our most recent mapping strategy, which has made a world of difference with his pronunciation of so many words!

Turn down the tunes and listen to my boy go.

Wednesday Workout - Self Advocacy

2011-09-28T10:12:00.002-05:00

This is something we've been working on for quite some time and will continue to work on for years to come. For us, it's happened in stages, each stage equally exciting and ones you never forget - so exciting that it's baby book (or blog) material:

Does not tear off CI when put on - actually wears it most of day showing he LOVES to hear.
When coil falls off, puts coil back on without assistance - showing he LOVES to hear.
When whole CI falls off onto floor, actually PICKS it up and brings it to you to put back on - showing he LOVES to hear.
ASKS for CI first thing in the morning or right after bath - showing he LOVES to hear.
When processor portion falls off ear (coil still connected), comes and says, "My CI! Help please." - showing he hates the feeling of it just dangling ; )
Tells you (with words) that the CI has turned off and is not working (although still on ear and coil attached to head) - showing he LOVES to hear.

and not that it ends there. Not even close. In fact, that's just the beginning of true self advocacy - truly letting people know, "Hey, I didn't hear you" and it has to start now. I don't want Aiden to be shy about speaking up for himself. I don't want him to feel apologetic for missing a piece of information because he didn't hear them. If he's having technicalities with his CIs, I want him to speak up and seek out the help he may need to get that technicality fixed. If he's having trouble hearing due to where he's sitting in class, or standing in a room, or whatever the reason may be, I want him to feel comfortable, not embarrassed, to SPEAK up for himself.

Unfortunately, Aiden has come home a few times already this school year with one of his implants OFF. Yes, OFF. We have Aiden's lights turned on for this reason - if they're blinking fast - he's good to go, slow - something's wrong, off - the CIs off. This is all documented in his notebook, with each error code, what the error means, and how to troubleshoot it. I've also met with his teacher before school started and gave a quick demo on them. It's hard to say if it turned off on the bus, was never turned on appropriately after nap (oh the thought!), fell off, and while the teacher or aide was putting it back on it turned off (not totally uncommon when putting it on - that's why it's important to do a quick ling check or check the lights), etc. I've talked with his teacher each time about it, but if it happens again, I will call the principal and ask to come in and explain Aiden's CIs to everyone who he is with throughout the day.

in the meantime ...

I'm teaching Aiden, that HE needs to tell the teacher or the aide or whomever he may be around - "HEY, my CI isn't working."

note: stop the music to the right. sorry it's so small too!

so proud!

today

2011-09-26T13:09:00.000-05:00

today I went in to meet with Aiden's SLP to review his latest articulation test results.

(Ling Phonetic Evaluation and The Goldman Fristoe).

HUGE difference from May to September.

YAY buddy!

today I learned that even though Aiden's making great strides, there's still a lot of concern

about his articulation when imitating a sound using a simple consonant-vowel (CVCV)
syllable structure (ex. ba-ba),
particularly with the /oo/ and /ow/ vowel sounds
and /w/, /f/, and /h/ consonant sounds.

today it was reiterated to me, that although Aiden can say most of the phonemic sounds in isolation,

he struggles getting them correct when spontaneously using them in words

(without imitation), mainly with multi-syllabic words or in simple sentences,

and in all placements - initial, middle, and end.

We know he's hearing them, as he can imitate any sound back,

but when putting the sounds together, he gets "tongue tied"

aka problems with motor planning.

today his SLP voiced concerns about his balance

and that on some days she has to hold his hand all the way back to the classroom

as she's scared he's going to fall.

I know he has good and bad days, but I've never thought he was about to fall over from walking. Maybe I'm "too" used to it.

She asked if we thought about getting him evaluated from a neurologist.
deep breath.

today I reassured myself, that all in all he will be okay.

with a great SLP at his school working on his articulation,

and a great AVT working on his language and listening,

and a great OT working on his overall praxis/motor planning

WE WILL GET THERE!

today I observed Aiden in his classroom (he couldn't see me).

I love watching my boy in action. He was quite quiet, sorta stand-offish.

He seemed withdrawn,
he said "I want applesauce" perfectly at snack time.

My mind was being very critique"ish" as I watched.

I like his school, but I don't LOVE it,

and I don't like that feeling.

today as I sat there and watched him I held back tears - okay, tears flowed.

I know he's come so far, but it just seems to be one thing after the other lately.

We work SO hard with him. We have SO much to work SO hard on.

So much to do, so much to take in.

It's time for his break.

today his teacher came in and talked to me as I observed.

She had great things to say,

"He's so smart, he knows all his letter sounds, he's such a happy kid, he's so sweet.

Yes, it's hard to understand him and he can be quiet, BUT we're working on that."

I know.

today I told his teacher I needed copies or names of the songs/poems they learn,

so we can sing them at home. I need to know what they're doing

on a daily basis so I can talk to him at home about his day at school.

I need more, so I can help them help him.

today he was also tested by the school's OT, which I also observed.

It was hard watching all the other kids leave the class to go play while
he sat through yet another test for the possibility of yet another therapy.
He's getting one hour a week of a private OT outside of school,

PT once a week at school, and now they want to add OT to school once a week too.

I'm going to think about that one.

today his teacher suggested that we take that OT spot at school
and that it happen during recess so he doesn't
miss out on language activities in the classroom.
miss out on recess?
he's three.
I just thought about it.
and I think we'll just stick with his private OT, whom he loves.

today I showed his teacher and the OT his Thera-Tog aka Super Mario suit and how it works.

He's not too fond of it, but once it's on, seems to be okay. I haven't put it on for school yet,

as I'm not ready to tackle that fight every morning before the sun's even up

AND it usually takes bribery of chocolate to get it on.

Hmmm, chocolate for breakfast. Sure, why not.

today I tried to sneak out of the school to go have lunch with my hubby,

but a little someone saw me before I left.

today it's raining.

today was a reminder of how far we've come,
yet how far we still have to go.
you know, one of those bitter-sweet,
want to cry, but should rejoice, type of days.

today I took that certain little someone out of school early,

sang the awesome CD from JTC all the way home,

and had a great lunch of pb & j with my little man.

today I made chicken and dumplings in the crockpot.

Perfect warm the soul food on a cold rainy day.

today is the perfect day to get in a good long snuggle with that perfect little someone,

just the Rx needed.

Ten on Tuesday

2011-09-20T20:54:00.000-05:00

1. Aiden had another audiology appointment this past week. They tested him in the soundbooth to see how well he was hearing with his new maps. Unfortunately, Aiden does not like the booth and shows his control. He was not very cooperative. His audiogram looked okay, but I know he was hearing better than what he tested. For example, he finally responded at 40 db at 4,000 hz, yet can imitate the /f/ and /s/ perfectly. We decided not to make any changes and check again soon. Deep breath.

2. The day after his audiology, he had AVT. We haven't seen Dr. Don since June (due to JTC and other family trips), but he warmed right up. We're back on track to three AV sessions a month. I'm excited to get going again, just not excited about all the driving. Ew.

3. Just Aiden and I went to his appointments (2 hours away) since my oldest two had school and weekend activities. Saturday night was girl's night with four of my sister-in-laws, my mother-in-law, yummy food, laughter, and lots of wine. Just what I needed. Love them.

4. I made it home in time for Kailyn's first volleyball game. It's more like a eight week volleyball camp. This program is amazing! The girls are all 5th and 6th graders, broken into 6 teams coached by girls from the HS varsity team. They'll stop in the middle of a game to guide the girls. Everyone plays, every hit is followed up by a "Great job!" or "Good try, now let me show you this...,", and no one feels silly for not getting their serve over the net (seriously, I don't think I could get it over). Love it.

5. Ryan starts lacrosse this week. Just practice. The season doesn't start until THE SPRING! Yes, they will begin practicing now, conditioning this fall, participate in an indoor league, then full on practice after Christmas - all in preparation for the Spring season. Insane, but good.

6. We have deemed Thursdays, THERAPY THURSDAY for Aiden. I'm going to keep him home from school all day since he has OT in the mornings and AVT in the afternoons. Alone time with my baby!

7. So between #4, #5, and #6, then throw in PSR (Parish School of Religion aka CCD), Kailyn's soccer, and Ryan's TeenLife, the crockpot is about to become my best friend. Favorite recipes?

8. Yesterday Aiden had a slight fever so I kept him home. So he was out last Thursday for OT, Friday for audiology, then again Monday. I have to admit, it was really hard to send him back today. He's become a mommy's boy all over again, constantly wanting to snuggle and hug on me, and I'm secretly loving every minute of it. Before I know it, he'll be all grown up, and I'm not ready for that.

9. I sat back today and watched Aiden play house and bus. It was amazing. I was in awe as I listened to him mimic his bus driver and two friends who ride with him. Then at "home" he talked nonstop as he set up the "batroom", "tichen", "wiffin room", and "bedroom" and moved everyone around. Before I knew it, he had the cake on the table with everyone sitting around and EVERYONE got to blow out candles after their song. I cracked up as he sang, "happy birfday daddy, CHA-CHA-CHA, happy birfday daddy, CHA-CHA-CHA...".

10. Resume = still not done = still have no clue what I want to do = stressed out momma = need to find something flexible/work from home because my life is WAY too busy with THREE kids and all their business to go to work in an office 8 to 5 = I really don't want to go back to working full time because I LOVE being a mom and staying home with my kids, YET, I want to help provide more for my family and it would feel nice doing something I enjoyed. If you could work from home, what would you do?

Wordless Wednesday

2011-09-15T09:12:00.001-05:00

my loves. my life.

Ten on Tuesday

2011-09-13T22:15:00.000-05:00

1. I have been very busy trying to put together an updated resume, not an easy task when you've been out of the workforce for over three years and the whole look of them has changed. I think I have gained more experience from what I've done the past five years (including the two years of taking care of my dad), than I have my entire professional life.

2. What makes it even harder is what to pursue!?! There are so many teacher lay-offs around here they've already planned for next year's! AND I just heard today on the news that they may base those layoffs on how well the teacher's students perform on standardized tests. Because you know, it just doesn't matter if half the class doesn't get it, it's time to move on because we have to stay on the "teach to the test" schedule. No thank you. ugh.

3. Speaking of ugh, poor Kailyn (5th grade) has had over two to three hours of homework A NIGHT since school started. After a week and a half of it, I scheduled a meeting with her teacher to "review" her IEP and make sure it was being followed, discuss K's performance in class, as well as to set up a team plan to help Kailyn be successful.

4. Aiden's literacy skills are taking off. He loves making the different sounds letters make. He's starting to put these sounds together to spell words - seriously. He knows how to spell cat, cow, mommy, Aiden, and dad and is identifying many written words in isolation (star, car, house, boy, girl, ball, love etc). I think he'll be reading before kindergarten. I write him a note on a napkin everyday for his school lunch and his teacher told me today that he read it to her! It said, "I love you Aiden! Love, Mommy" (out of memory, but still! ; )

5. Another thing Aiden loves to do lately is look at everyday objects and tell me what shape they resemble. For example, the other day he pointed at the fresh sunflowers in a vase and pointed out how the middle are circles or he'll pick up the cereal box and say "two rectangles" (front/back). He does this everywhere we go. Out of nowhere I'll hear him say, "triangle" as he points to the roof of a house, or "mommy look, circle", as he points to the tires on someone's car. My future engineer.

6. This week we head back to Cleveland for another audiology appointment - this time we're going straight to the booth to see how he's hearing with his new maps, hopefully it will be short and sweet. Then on Saturday we start back up with AVT after taking the summer off due to all our travels.

7. I have received so many compliments this past couple weeks on Aiden's speech. His OT saw a difference within a week's time (both in speech and balance) and said, "He sounds so much clearer." His speech therapist from school called to tell me, "I can't believe how far he's come over the summer! It's night and day!" I've even received a record number of compliments from complete strangers. LOVE IT!

8. For my birthday, my mom bought me this. Best.Birthday.Present.EVER. So far, I've read this and this and I can't wait to start this , although I'll need a good fiction one to go with it. Suggestions? AND, there's always a daily deal AND I found out you can SWAP books with other owners!!! Loving it.

9. This past weekend I had a cold that put me down and out like no other. I did something I rarely do, and I did it for two days straight - ABSOLUTELY NOTHING - and I'm proud of myself for it. (ok, I cleaned a bathroom and vacuumed downstairs the first day before I started doing NOTHING, but then I felt better about doing NOTHING ... don't say it, I already know).

10. It's eleven pm, the house is silent, and I'm off to beat my latest game addiction on my new iPad - my other best.birthday.present EVER from the loves of my life.

Wednesday Workout - Cheap Therapy

2011-09-07T10:02:00.001-05:00

I LOVE the dollar aisle at Target. They always have the neatest things - from chip bowls, to cute holiday platters, to THERAPY toys! All typically TWO BUCKS or less.

I picked up these foam shaped blocks for a dollar a couple weeks ago. They have become Aiden's favorite thing to do and we have spent countless hours of ~~therapy~~ play time with them.

Here are some language goals that we're currently working on with Aiden:

Use of pronouns
Understand quantitative concepts of some, rest, all
Answers what and where questions.
Understands questions with post-noun elaboration (white kitten that is sleeping)
Understands spatial concepts of next to, in front of, in back of
Identifies advanced body parts such as forehead, wrist, eyelashes

and some auditory goals:

Recall four critical elements in a message
Sequence a series of multi-element directions

In addition to these, there's also OT, speech goals, speech babble, cognitive etc to think about. The more you can do to incorporate all into one lesson, the better ... and these $1 foam blocks, did just that!

Aiden creating his own pattern

Pronouns - emphasized use of me, I, mine, my, you, and your(s) throughout playtime (Aiden refers to himself as "Aiden" instead of me or mine).
Sentence expansion - As we played, I would put four or five blocks aside. Since Aiden mainly speaks in two-three word sentences, I always expand it to four or five words, with emphasis on the extra word I include. He seems to imitate better if I have something he can "touch" for each word said. For example, "I have ALL squares." and I would touch one block for each word spoken, then he would do the same describing what he had. I've also used scraps of paper or pennies for this too.
Syllable work aka speech babble. This really helps with his articulation and expanding sentences. Right now we're working on simple speech babble up to four syllables (again, by touching each block, helps him get the four syllables out instead of stopping at two or three: ba-ba-ba-ba, bo-bo-bo-bo, be-be-be-be, ba-bo-ba-bo etc). This is very helpful with his speech motor planning and oral motor skills.
Auditory memory - build a tower, as instructed by mom ("...two circles, two orange squares, then a green star on top"), then BLOW it down - (good for oral motor and breath control)
PATTERNS! I would create a row of blocks and as I made it, I'd say, "orange square, blue circle, orange square, blue circle". Before I knew it, he was making patterns with three-four elements all on his own, and would say, "orange square, blue square, circle, star, orange square, blue square, circle, star ...". Also good to throw in sequencing words first, next, and last.
Counting and math - answering the question "how many ...", but they weren't just simple how many questions, but more like, "how many green stars and orange squares do you have ALL TOGETHER?"
Quantifiers (some, rest of, all, etc) - "Give me ALL of the squares." OR "Pick up the rest of the stars."
Body parts - "Touch the orange square to your forehead", "Put the red heart on your wrist." etc
Adjective comparisons - tall, taller, tallest, short, shorter, shortest, long, longer, longest etc. by building towers and "trains".
Prepositions - build a house or tower then instruct, "put the orange square in front/in back of the house/tower" (other words used, behind, next to, on top of, on the bottom, in the middle, underneath
The NOT word - "Give me all the blocks that are NOT squares." At first, he'd hand me all the squares. By the end of our first play session, he would hold up a shape and say, "NOT a (square/circle etc) and would gleam with pride!

ALL FOR A BUCK.

Out of the Booth Audiology

2011-09-06T08:00:00.000-05:00

Here is a more detailed account of our recent "out of the booth" experience at the audiologist's.

In the past, Aiden's mapping appointments always started with him in the soundbooth - test lings, create audiogram based on his conditioned responses using pure tone audiometry (or sometimes warble tones), measure speech recognition (repeat for each CI separately, then together). Then head back to the audiologist's office and adjust CI programs based on new audiogram and parental feedback of ling checks, voice quality, spontaneous language use etc.

This appointment went more like this (I'll do my best to explain it, but let me preface by saying I am by far not a professional audiologist. I know enough about mapping to be dangerous and explain it to the best of my knowledge.)

FIRST - changed maps based on Neural Response Telemetry. (background if you'd like: Aiden's implanted electrode arrays each contain 22 electrodes, each one delivering different loudness and pitch of sound to his auditory nerve then onto the brain. The NRT provides an objective measure of how his auditory nerve responds to the electrical stimulation produced by each electrode. This provides the audiologist with initial programming parameters.)

I had learned from another audiologist that they typically see a common shape on the maps based on NRTs.
Aiden's "old" map on his right CI was very similar to this said "commonality", and to his NRT. There were no neural responses in the high frequencies (in which she calmed me down after a brief mom freakout and helped me understand that just because there isn't a response to some electrodes, doesn't mean he isn't hearing the sound - in fact on his right CI, there were only THREE responses out of the 22 electrodes. She reassured me that this in not uncommon and that older CI patients reiterate they still hear sounds where electrodes show no response). So, based on our personal observations and his audiogram from JTC (30db@4000hz), she increased high frequencies too.
For his left CI, there were more drastic differences in his old map vs. this commonality AND his NRT results, especially in the low and high frequencies. We did see a lot more responses across all frequencies from this NRT, which went hand in hand with this "common" map shape I was told about. His lows here were very sporadic and were made more "fluid" and the mid and high frequencies were both increased.

AFTER, changes were made based on NRTs, we talked to Aiden about things sounding "too soft", "good" (thumbs up!), or "too loud", and we showed him a picture of monkeys demonstrating each. She would then bump up his levels, across the board, little by little. I was very apprehensive of this, as he is only 3 1/2 years old, and wasn't quite sure he completely understood what kind of response we were looking for. Low and behold, he seemed to be pretty on target instead of all over the board with just "choosing" whichever monkey. After a couple increases, he would immediately cover his ears and say, "it's too loud". Very small changes were made based on this.
FINALLY, she tested him based on his phonemic awareness that ranged across all the frequencies for each CI. For example, he had to imitate back /p/, /t/, /k/, /d/, /g/, /b/, /m/, /n/, /f/, /s/, /sh/, /v/, /z/, /ch/, /dg (j)/, /y/, /l/, /r/, /h/, /l/ and all long and short vowel sounds, including diphthongs. (all the sounds noted are listed as you and I know them - not as a speech pathologist writes them ; ) )

With his right CI, he repeatedly imitated /k/ as /p/, /f/ as /s/, and /g/ as /d/. After making a few adjustments, he said each one pretty darn perfect.
With his left CI, he repeatedly imitated /f/ as /p/, /g/ as /d/, /p/ as /t/, /k/ as /t/, and he was very closed mouth with the short i and e. Again, after adjustments, he was saying each one beautifully!
/v/ was hard on both sides and we couldn't get him to imitate it, but at one point he was pretty close. We also could not get him to reproduce /n/ for the life of us (kept reproducing it as /m/; they overlap each other on the speech banana), but he does not seem to confuse them in his speech (besides the word "milk", which he says "nilk"), which we'll keep watching.

After all this, we would ultimately bring him to the soundbooth, but after two plus hours, he was spent. We are heading back in two weeks for a new audiogram. I can say though, that the days following, I'd sporadically ask him how things sounded, and before I could get out the choices of too soft, good, or too loud, he'd throw up his thumb and tell me, "good!"

During the whole appointment, my little monkey entertained. What cracks me up is he knows he's funny and laughs at himself. A few times throughout, his audiologist would cover her mouth and tell him to listen, and before she could get anything out, he'd yell out, "ah, oo, ee, s, sh, m" then laugh and laugh. Or she'd say a letter sound, and instead of imitating it back, he'd tell her what letter it was, then laugh some more.

Little stinker.

After four days with his new map, I still see very good changes in his speech, but he still sounds very jumbled when putting more than two or three words together. Even though his technology definitely needed a good tune-up, he still has motor planning challenges, which is why we will continue on strong with OT. As Aiden strengthens and overcomes his praxis challenges, we should also start to see an increase in his conversational speech. I think this is going to be a GREAT year for him!

High Expectations + Hope & Faith = Road to Success

2011-09-03T14:56:00.000-05:00

I think we're finally on the right track. I finally feel like we're getting somewhere. I finally feel like the light is getting brighter; like our team is complete and that everyone is on the same page, on the same team.

After two plus years of trying out a couple OTs to an evaluation from a different OT to being told he's fine, we have finally found a PHENOMENAL one who truly specializes in sensory processing/sensory integration, which both go hand in hand with Aiden's whole body motor planning/vestibular/proprioceptive/praxic challenges. But more than this, I found one who LISTENS. I was beginning to think I was a crazed mom with too high of expectations that people looked at like, "you're kid is really fine lady", until I went to JTC, and they concurred with me, plus some. Then I came home and was presented with Miss Amie (whom, btw, is not only the best OT ever, but Aiden also receives "free" speech therapy as she makes him talk - imagine that!) She gets it. She sees it. She works him. She works me. I'm understanding more. I get it. I now see why OT is the "fun" therapy. I also get homework every.single.week. I knew she was out there. I LOVE her, but better yet, Aiden loves her.

Aiden in his Thera Togs aka "Super Mario Suit"

AND

After two plus years of searching for a consistently good map for Aiden, I think we have finally found the strategy that will work for HIM. It's based on phonemic mapping, not mapping just based on pure tone audiometry, but based on phonemic awareness. Amazing. I learned about this from seeking out an audiologist from this clinic in San Diego. I heard about them from our former AVT, Miss Becky, after she heard we were possibly looking at an apraxia diagnosis. She knew we always had trouble with Aiden's maps and expressive language, so she suggested I contact this clinic. Which I did; which I spent countless hours on the phone with them understanding their mapping theory; which I loved and which made sense. But I knew a trip to San Diego every three months for mapping appointments wasn't fathomable, not out of the question, but seriously expensive. I called Aiden's audiologist and her words to me,

"I will do whatever it takes to get Aiden on track to be successful. I will talk to them, we will get there."

Yesterday was our first mapping appointment utilizing this new technique. One word - AMAZING. In less than 24 hours, I hear a difference in Aiden's speech - it's CRISPER, the ending sounds on words are CLEARER (including the /t/ and the /k/ and the P!) My boy said Fish and LeaF.

OT will work on his motor planning; a new mapping strategy will get his maps back on track. Between the two working together, I see the light. My hope has been reenergized. I finally feel like we're not stagnant, but the train is moving forward and everyone's on board, as a team. I can't wait to see what's around the corner.

I have more details on both, which I will get to, but to end, what I've learned is,

never give up; I will always strive for what I know best - MY CHILD - because I am his biggest advocate - and honestly, can my expectations ever by TOO high? Never.

Back to School

2011-08-25T22:32:00.001-05:00

Wow. This summer flew by. Busy is an understatement, but we had a blast, and great memories were made.

All kids got up pretty easily, most of them excited to start their first day. I'll let you guess which one wasn't (hint: he's taller than I am).

SMILES:

my handsome high schooler to ...

my excited 5th grader to ...

my preschooler!

Through the summer, Aiden slept until 9 or 10. No joke. First day of school, he got up with no problem! The best part, the lack of our typical wrestling match trying to get him dressed.
Aiden says, "No more J! Mary!" ("J" is what he called his teacher, Mrs. J, from last year, Mary is his new teacher). Love it.
No tears on the bus! AND, his friend Eric is riding with him this year too! It's amazing for as little of a city we live in that there's another little boy Aiden's age with bilateral Nucleus Freedoms. They are the only two with CIs in our local school district, hence our reason for sending them out of district. ; )
At drop off, he looked back, waved to his bus driver and yelled, "Bye Jahtee (jackie)!"

He was a bundle of laughter and smiles the rest of the night, talking nonstop.
Kailyn's one of the "big kids" in the school now (K-5th) and boy is she loving it!
As her bus pulled away today, she was in the back seat and mouthed to me, "Look! I get the back seat!" Guess it's still cool to ride in the back of the bus.
My best oldest child ever, Ryan, wasn't too excited about his first day, but then again, what teenager is. We decided to enroll him in a Catholic high school for the remainder of his high school career. Our local district h.s. wasn't a good fit and there were a lot of things we didn't agree with or like about the school. The good thing is he's completely on board and is very positive about his new start. He's hating the whole uniform thing - I on the other hand, love it.

and DEEP BREATHS

I struggle with the thought of Aiden being in school five full days a week. He's just three. The good thing is they nap the last 60-90 minutes of school - this is good as he won't nap at home, but he will with others. It's a long day, but a structured day full of language enrichment. I'm going to give it a month or so, if it seems too much for him, I'll change back to 1/2 days like we did last year. I honestly think he'll be just fine.
On top of the long school day, he has quite the bus ride, which makes his day even longer. He's on the bus a good 45 minutes each way to and from school. I may start to pick him up though, since I'll pick up Ryan everyday and their schools are only a couple miles from each other. I gotta say, he loves riding the bus though, and I like the thought of some one on one with Ryan before my wild ones get home. We'll see.
On top of school, Aiden will still have his auditory verbal therapy every other week and OT once a week, each during the school day. Then there's the possibility we may have to add a speech pathologist in the mix, but I'm going to fight to get him more speech time at school through his IEP. I'm thinking of taking him out of school one day a week and deem it "therapy day".
I have worries for each of my kids this year, one no more than the other. I worry about Ryan and Kailyn just as much as I worry about Aiden. Being a teenager is not easy and honestly, you couldn't pay me enough money to go back to those years. I hope he finds himself and realizes how much he has to offer this world. He truly is brilliant and has such a big heart. Kailyn struggles in some areas and I pray the school jumps on board and starts working as a team with me. I have to say, my girl always has a smile on her face that lights up a room, but is her own biggest critic. I'm working hard with her to get that "I can do anything I set my heart and soul to" attitude. Aiden has new obstacles to overcome on top of everything else we continue to strive for. We're still on the unknown path, with no official diagnosis, but we've also already entered the path to success as we work through mapping issues and get a jump start in OT. All I can do is hope. Hope and pray, and continue to support each of them in their own journeys. It's not easy, but I know they will all overcome.

I have a feeling it's going to be a good year for all of us; very busy, but good. We all have some hard work ahead of us, but I think we're at the point where we're ready for anything ... either that, or about to all fall on our faces, but what fun would that be?

Ten on Tuesday (ok, eleven)

2011-08-23T08:05:00.001-05:00

I have so much catching up to do. All three kids start back to school tomorrow, so hopefully I'll get in more blogging time and able to catch up on our summer journey.

For today's "ten", I thought I'd post ten of my favorite photos from our three week journey at the John Tracy Clinic. Truly though, they are all priceless.

my partner.

I love this picture for many reasons, foremost, it screams - WE MADE IT! all after:

getting to the airport at 5:30am in Cleveland;

to taking the tram to switch planes in Dallas;

to arriving in Burbank then having to tote two suitcases, a car seat,

four carry-ons, and a 3-year old to the rental car bus to the rental car place;

to navigating our way in LA (first time there) to the apartments and,

having to make an extra go around in lunchtime traffic through LA before finding it.

This girl was my ROCK! She didn't complain once, she helped out without being asked,

she kept Aiden entertained, and she gave me many smiles and hugs throughout.

She kept me grounded and calm.

and we celebrated our success together - this girl is AMAZING.

lifelong friends.

I remember the day I called up my friend Kat and talked to her about JTC.

We met each other right before I left Texas.

We talked on the phone MANY times after I left.

We became best buds through all our hour plus long conversations -

like we'd known each other for.ever.

We met a third time and experienced a once in a lifetime journey together at JTC,

and tightened our bond even more.

and while there,

our kids created that lifetime bond as well.

one day, our kids will look back at this picture and laugh at how small they were,

then provide a "cheers" at how far they have all come.

a smile.

Ahhhh, Kathleen, the perfect way to begin and end everyday,

with her welcoming, heart warming smile. If you needed something,

she'd do her best to have it to you by the end of class.

She is beyond amazing.

quiet time.

This reminds me of the down times we had.

no tv in the apartment, electronics were limited,

and we could only bring so much. when we weren't outside,

Aiden did a lot of "reading". here he decided to read to

his new horse, which was given to all the kids

the day of orientation.

best buds.

It was hard to choose between the two above.

As Aiden would say, this is "Monden" (London).

He was the first name Aiden knew from his class;

they were buds the whole time.

Both were more quiet around others,

but sure did chat it up to one another.

i LOVE these two pics.

the path.

this was our walk every morning to school.

aiden, always the "lolly-gagger", would take his sweet ole' time

down this path, having to stop and check everything out.

to the right was the "never-ending"

gathering lawn and the apartments, and

if you asked Aiden which way to school (once out the gate),

he'd point to the left, and say, "Dis way!"

harmony.

We all know the (out in public) "stares and looks".

here, our children were unified.

not just our hoh/deaf children, but our hearing children as well.

and not just the children, but just as much, the adults.

being around people who truly "get it",

learning from one another, realizing,

we're not climbing this mountain alone.

forever.friends.

The sibling program at JTC was one of the largest they've ever had,

nearly 20 siblings coming together,

and it was purely phenomenal.

Kailyn made life long friends with girls and boys

from around the world.

she made crepes with Armelle and Clarence from France;

had sleepovers with Sydney from Texas;

ran the lawn (and tv room) with Debi, OJ, Christian, Gregoire, Louise, Owen, and Cole;

became a "big sister" to many of the younger ones,

and adopted her own big sister, Alyssa from Alberta.

the relationship and memories these kids built together,

was priceless.

family.

the first two weeks was Kailyn, Aiden, and I.

By week three, we were missing "our boys"

and ready to reunite as a whole family.

I am so grateful that Aiden's daddy and brother got to experience

a piece of this life changing journey with us.

it takes a village.

each person in this picture has touched my life in some special way -

through words, hugs, tears, smiles, lessons learned, listening.

relationships were built, life-long friendships were made.

each with our own journey, yet

together. united.

with similar goals and hopes -

to overcome obstacles, to obtain services our children NEED,

strength and knowledge to forge on & fight for what WE know best - OUR CHILD,

for our deaf/hoh children to LISTEN and SPEAK.

and together, we will make it.

and this list wouldn't be complete without:

the infamous tree.

and just like the John Tracy Clinic,

you have to be there to truly experience all it has to offer.

and in the meantime ...

2011-08-11T15:04:00.002-05:00

check out one of my favorite people in the world's blog, who ventured with me to California, and who wrote this post about our amazing adventure.

She says it perfectly.

miss you so much my friend.

Ten on Thursday

2011-08-11T13:34:00.005-05:00

Here are my top ten reasons for not being on here to write a post, or read my favorite blogs in what seems like FOR.EV.ER.

1.(and I'm not talking about having fun at Universal Studios - I'm talking about a teenager, a preteen, and a toddler.)

2. Not ONE day on my August calendar is blank. seriously.

3. Many days on my August calendar have multiple entries.

4. I'm still catching up mentally, physically, house work wise, paperwork wise etc. from our three weeks away at JTC.

5. A three year old who will not sleep in his bed and has night terrors even when sleeping in my bed. I have not had a solid night sleep since WAY before our trip to California. I'm ready to commit myself just so I can have some alone time AND get a decent nights sleep.

6. Two weeks before JTC, my better half was in Georgia for two weeks. I leave to JTC for three weeks, he comes in for the last one. As soon as we get back home, he's gone again for another week to D.C. This week, he's sick. Can you say single.momming.it?!?

7. At JTC one of the dad's gave me advice to "go home and take 5% of time for YOU." Love the sound of this. I'm yet to try out this soundsamazingandwillhopefullyhappenrealsoon rule. See #'s 1, 2, 3, 4 & 6 above. Unless I want to get up at the crack of dawn, which doesn't work because of #5 and I'm already a walking zombie, PLUS I've already tried that and low and behold, it was the same day the troops decided NOT to sleep until 10am.

8. Prepping for the new school year - I have three kids, three different school districts, two different IEPs to review and update, three different logistics to and from school to figure out, who all start on the same day and I cannot wait.

9. When we're not running to an appointment or to a sports camp, we've been spending time with family. Our first weekend back was spent in Cleveland, then last weekend we had a houseful here, then tomorrow we're heading BACK to Cleveland for our first "out of the box" mapping session and TWO family parties. Whew.

10. and I'm supposed to go back to work as soon as the kids are back in school.?.

whatever. I'm going to add up all those 5 percents per day I've been missing out on and call it my sick time. Gotta go do the math. oh, and get my oldest to a parent meeting/prayer service at his new school and his sister to soccer camp which of course are both at the exact same time. so thankful for the counselors at JTC who taught me some seriously good deep breathing, calm yourself down techniques!

Another Hurdle?

2011-07-24T19:19:00.002-05:00

Okay, so I got up extra early the other morning, before the troops, and started to summarize the last two weeks at JTC, but never finished. I was trying to say too much at once.

Now I'm back. and while I want (and will) summarize this completely amazing trip as much as possible, I have to write from the heart. Because that's how I write best. Before I give out all these amazing tips and lessons learned, before I write about all the extremely phenomenal life long friendships I've made, before I tell you ALL I've learned, I have to get out what's on my heart.

It was a very hard week for me. I'm going to be very upfront. I know I shouldn't compare my kid. I know I shouldn't me sad for my child when I look at how amazing another child is doing - but guess what? I have. I do. and of course I am SOOOO happy to see these children excelling and speaking. OF COURSE I am!

but in my mommy heart, I also know there's something else going on, and before this trip, had no clue where to turn. my heart hurt and my tears flowed. Because now, I'm getting a clue.

We came to John Tracy hoping for yet another opinion on why Aiden's spoken language seems to be delayed. They (meaning the statistics) say (something like this - not exact numbers, but close), "when your child has a receptive vocabulary of x amount of words, they will start saying their first words. When that receptive vocabulary grows to x amount, they will start putting two and three words together. etc. etc." (I have the statistics at home, so I can't quote them directly). Aiden's receptive vocabulary is HUGE! His expressive vocabulary is HUGE - as long as he is saying the words in isolation or within a two to three word sentence. He is GREAT at repeating and imitating a model, but when he tries to spontaneously put words together, it is a jumbled mess. I've been told, "he's a boy". I've been told, "it's just taking him a bit longer". I've been told, "he says PERFECT blends (i.e. SNake, and TRain, etc) and it will come when it comes". I've been told "he can say a four/five word sentences", yet he's been modeling that specific sentence for months, and it's probably one of a few.

I'm watching kids here, who were implanted a whole year after Aiden, who are answering "W type" questions. I'm watching kids here talk into the microphone each morning and say a pretty damn good, "Good morning friends." When Aiden says it, you can barely understand it because it's all jumbled together ... more like, "goo-orng". seriously. Aiden is a great imitator. He has a HUGE receptive and expressive vocabulary list. Aiden is SO ON cognitively, but again, something's missing.

Last week we had our one hour speech therapy here at JTC (with a cert. AVT). We played "Guess what's in the bag" and showed him the three categories of items. He knows farm animals, food, and clothes categories ... he knows them. Yet, when something was described to him, he could not vocalize what he needed to.

Something is missing. After one particular morning of listening to Aiden speak in class, I met with his SLT, holding back tears. I had just witnessed a situation of Aiden putting multiple words (like 3 to 4) together, spontaneously with a classmate and didn't understand him. Simple words he knew. She asked me what my heart felt, and I told her, I felt something else was going on. She suggested getting him tested for Apraxia. She thought we should get other avenues tested and gave me the tools to find a good center in our area.

BUT ...

It just so happens that at the same time as we're here, that an AG Bell conference was happening in DC and one of Aiden's first AV therapists attended a class about CI kids who are not performing as well as expected. She knew our story. The class talked about these kids being misdiagnosed with Apraxia when in fact, it had to do with their maps. And she found me a local CA resource to provide another opinion.

So, here are our next steps:

We're calling this audiologist in the San Diego area, who specializes in similar situations to get a second (or truly third) opinion on Aiden's program ... because without the right program, a child will not move forward.
We're checking out, with the help of Aiden's SLT here at JTC, where we can get him tested for Apraxia or similar disorders in our area.

What does our future possibly look like?

All depends on the above two factors. The audiologist at JTC believes he has a good map. They say it could be better, but it's good. If we find out that his map is good from yet another third opinion, we have another evaluation on our hands.
If he tests to have apraxia, we have yet another therapy on our hands. and a therapy that is almost like starting from day one. BUT we will move forward. I will not stop.

I can truly say I'm spent. Of course I will do ANYTHING to get my child the help he needs. I will do ANYTHING to get him there. I'm not ready for this, yet I believe I've known, and have been preparing myself for the next step no matter what it may be. So I have to be there. No matter what the outcome may be. I have to be ready. yet, it tears me up inside.

So my questions to you:

Do you have a child with CIs and Apraxia (or something similar)?
What is the therapy like?
Do you have a child who gets it receptively and cognitively, and somewhat expressively, but couldn't put the words together because of a bad map and finally figured out what the problem was?

I have to find answers. For me, but even more so, for my boy. I will not give up.

Small World

2011-07-14T23:01:00.006-05:00

I am whooped. It has been a LONG week here at JTC, yet one that has flown by. I already don't want it to end. Since I've been staying up very LATE and getting up very EARLY, I will recap the last couple of days tomorrow morning or this weekend.

But I just had to share this.

Dear Aiden,

Today, T's mommy (he is in your class, but about a year younger than you) came up to me and asked me when you were implanted. We had been talking and she too, had the same phenomenal surgeon at Johns Hopkins as you had. She flew all the way from United Arab Emirates to have sweet Thomas implanted there. They also have the same wonderful audiologist you started with and whom I miss dearly!

Anyway, after I told her your surgery date, February 11th, 2009, she proceeded to ask,

"Is it your Aiden who was in the National Geographic article on cochlear implants? I knew he looked familiar and when you said he was implanted at JHU, I knew it had to be true. I can't believe I'm here with him."

and she continued (not word for word, but main points) ...

"... Thank you so much! It was because of that article, because of seeing Aiden's beautiful face, with that smile. He looked so happy, so normal, so .... thank you. It was because of the write up, his picture, that provided us more comfort to move forward and it helped in our decision to have T implanted. It helped me talk to family members who weren't comfortable with the surgery, it helped me show family and friends what cochlear implants were all about ... "

I was in complete tears.

She continued to let me know how you are still talked about there (at JHU) and what a rockstar you are in their eyes. She knew your name before she even met you; and now, we're here, learning, embracing, together.

You truly are amazing and I hope one day you realize the impact you and your story have had on SO many. Your vibrant eyes and smile, vivacious personality, that pure silliness, and your determination and perseverance all SHINE through. It ALL shines through. I love you and are SO proud of you sweet baby!!

love,

mommy

JTC - A Letter to Aiden - Days 1 & 2

2011-07-12T22:34:00.014-05:00

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.

We're Here!

2011-07-10T09:21:00.003-05:00

Okay, so I got up extra early this morning to sit at my computer and have some peace and quiet time ... low and behold, the kids were up right behind me, so this is going to be short and sweet. As you can tell from the date of my last post (forever ago), that our summer has been absolutely nonstop, and the only sign in my future is yield - no stopping here until school starts again. Craziness, but loving it.

Anyway, WE'RE HERE!!! My clan of two and I have arrived at the third summer session, 2011, at the JOHN TRACY CLINIC in California. I am completely anxious, nervous, in awe, excited, teary eyed, flabbergasted, smiling ear to ear, completely exhausted, all in one.

We flew out yesterday morning at the crack of dawn, got to LA, road around the interstates surrounding the city a couple times (since I missed my exit the first time and was too scared to get off at any other exit in fear of finding a place I had no business being in), and FINALLY found the apartments. Nutso.

The apartments are old, but clean. Of course I had to do my own scrub down too. Found a grocery store and stocked up on all the necessities to live the next three weeks. I hate to go crazy, but we're venturing out again today for a few other things, mainly, a coffee pot, a trash can, and some hangers. This girl needs her coffee.

While running around, we ran into families coming in. The teary eyed part from above comes from meeting all these families who came from around the world to be a part of this amazing program, all for their own reasons, but the core all the same - they want their deaf/hoh child to hear and speak. Aiden's daddy and I have our own reasons for seeking out the program and professionals at JTC, which I'll get into later.

This afternoon is the meet and greet. My goal is to keep a daily journal through my blog of our adventures and the program. I'll try my best anyway, because single momming it with two kids and no tv is not easy. ; ) For now, I have two crazed kids and need to get to Target before all of LA is out and about.

Ten on Tuesday

2011-06-21T09:30:00.001-05:00

NUMBER ONE on the list - My little monkey is potty trained! Can I get a woo hoo! He's still having an accident or two during the day, and I still have to stop him and tell him to go potty, but by golly, we're doing lots of happy dances throughout the day! The trick that finally worked - the sticker chart and m&ms!

2. I have emailed nearly everyone I know who has gone to JTC and am meeting with another local mom who went last year to see all her pictures. (and if you haven't heard from me, and you've gone, umm excuse me, please let me know, I need to get in contact with you asap). With all this great advice (and my little OCD), I have made a plethora of lists, including: what to pack, what to buy there, recent speech samples, thoughts/questions, aiden's reports to bring, to do before we leave, places to visit while there - I think I need to make a list of what lists I need to make ... just kidding (maybe not), seriously, I'm really not that bad.

3. Aiden's favorite book right now is, Poor Puppy. I used this for a writing lesson with my fourth graders. I LOVE(d) this book. It's been part of our nightly reading for the past many, many, many weeks. What drives me crazy, it's been excellent in helping him with his /p/ and he can say "poor puppy" perfectly; but pig is still "kig" and potty is still "hotty".

4. Aiden's speech therapist from early intervention was able to fit him in for six sessions around our busy schedule this summer. I'm so excited because 1) Aiden loves playing with Ms. Cheryl and 2) it's only 5 minutes from my house.

5. For a good week, my niece becomes my fourth child in the summer (besides the fact that I love her, she keeps Kailyn busy which is huge). She came to go camping with us in Wisconsin, but after all that fretting of whether to go our not, I had to cancel our trip. Aiden had the flu, then I got the flu, and now Aiden has a cold. Sure, why not. I am so bummed, but already planning a possible August or Labor Day trip AND so glad all this ewwy sickness is hitting us before we leave to California.

6. and, we're still having fun. We've been to the zoo, the park, eating ice cream nearly every.single.day, praying it doesn't rain so they can swim and ride bikes, and of course, staying up late giggling to the wee hours of the morning (the little girls anyway).

7. and since we didn't head to Wisconsin, and I'm single-momming it right now, one of my SILs and her two boys are coming in for the rest of the week. we're going to try canoeing, find some state parks to venture through, grill it up, swim, sit around the fire drinking our favorite cocktails, and stay up late giggling to the wee hours of the morning (now add in the big girls) : ).

8. last night the girls asked if they could have ice cream for dinner. at first I laughed, but why not? it's summer and I really didn't feel like cooking AND how fun is that!

9. Summer yumminess to me is all kinds of fresh juicy fruit, anything grilled, and a delicious salad to go with it. I'm looking for new ones to add to my list. I made a three bean salad for today, making taco salad for tomorrow, and bought the stuff to try this one and this one. What's your favorite summer salad? Do share!

10. With all these kids in my house, I'm also looking for refreshing summer cocktail recipes. I bought the stuff to try this one. What is your favorite ... and yes, do share, and hurry, kids are about to overtake my house.

2011-06-17T07:09:00.005-05:00

"don't miss all the beautiful colors of the rainbow

looking for that pot of gold."

--author unknown

hope your summer is as colorful as a rainbow.

dear flu

2011-06-10T10:00:00.000-05:00

it's the beginning of summer break!

if you are going to run through our family

please do it now,

before our Wisconsin trip,

and definitely before our trip,

to California.

poor Aiden has had the wrath of you,

(first time ever),

for the past two nights.

which means,

so have I.

and now of course,

he's feeling better at 10:00am,

even though he was still throwing up

at 5:00am. I've had very little sleep

for two nights straight, and he's

decided to take the form of the energizer bunny,

when all I want to do is

take the form of the couch.

on a positive note,

we've had some good practice with

the following vocabulary:

flu, sick, belly, bucket, puke, throwing up, all better;

(which we've talked about this morning because he

wanted NOTHING to do with his CIs while he was sick, except

for the first night as I read to him at 12:30 am)

and which he used, as he handed me his cup of pedialyte,

in exchange for chocolate milk,

"mommy belly all better."

note to self:

next time you're at the drugstore with your daughter,

and she asks if you need a flu shot in the summer,

don't jinx yourself (and the whole family) by saying,

"no, you usually don't get the flu in the summer."

which of course, that same night, it all started.

Ten on Tuesday

2011-06-07T08:48:00.005-05:00

1. Aiden had his last day of school last week and my oldest two have one more day. Is it just me, or was this the FASTEST school year ever?!?

2. I am in the process of putting my resume together again. With Aiden heading to preschool full time next year AND the possibility of Ryan heading to a Catholic high school, it's time to go back to work. I wouldn't mind teaching again, but truly, I was busier when I taught than when I worked sales. I'm going to look into both, and am hoping to find something flexible enough to work from home. I refuse to give up being here for my kids before and after school - especially my teenager. ; )

3. For two straight days, Aiden's speech seemed jumbled. So was his walking. We go through these bouts here and there. Lo and behold, we head to Cleveland to see Dr. Don (AVT), and his speech was clear as day, including many blends!

4. Dr. Don finished up a big round of testing with him too. I was shocked at some of the words Aiden understood, but we also got a nice list of words we need to work on over the summer. A lot of synonyms - such as Aiden didn't know "different" but knew "not the same", or "alike" vs. "same" or "beneath" vs. "under" etc. He also wanted to see how Aiden did on the WIPI (Word Intelligibility by Picture Identification). This test has six pictures from which to choose, but before Aiden could see the pictures, he had to repeat what he heard. At our normal voice level, with background noise, Aiden repeated and identified 10 out of 10 words. Great listening buddy!

5. Speaking of listening in background noise, as my carpets were being professionally cleaned next to us, I checked Aiden's lings. I spoke the lings in my regular voice, about 2-3 feet away, and he repeated each one back bilaterally. Then on his own, he wanted to test each ear separately. This time he missed the /s/ and /sh/ on both ears, until I came closer and spoke a tad louder. I don't think I'll ever stop being amazed.

6. I miss Wisconsin. I miss my mom. I miss my grandparents. I'd love to meet a couple moms whom I feel like I already know through this wonderful hearing loss community. Kid's summer activities are C-R-A-Z-Y, including extra speech therapy for Aiden the school district is providing, and I'm already going to be away from my husband for a total of FIVE weeks throughout the summer. Do I skip a soccer camp and one of Aiden's speech therapies for the month for the fun?

7. In addition to the speech therapy mentioned above, Aiden's preschool teacher is also hosting a small play therapy group. This will be once a week, for three hours a day, for six weeks. We will be able to make three of them, if we go to Wisconsin, four if not.

8. Oh, and have I mentioned this awesome place we'll be at for three weeks?!? ; ) Speaking of which, I am in the process of finishing one list of preparations (all the lovely medical to dos) and about to make the packing list!! YIPEE!

9. Ok, I think I just talked myself into Wisconsin. Yes, Aiden could benefit from the extra speech therapy, but see #10 below and I think you'll agree, we ALL just need a break.

10. It' been one helluva a school year - all around - and tomorrow I'm celebrating it's end. We finally got Kailyn on an IEP just in time for the state tests (ewww) to be read out loud to her and identified things we definitely need to work on this summer. Now I have two IEPs to keep up with (yay me - did you hear that sarcasm?). It was a rough year, but thank God she had a teacher who modified for HER needs without something in writing. Imagine that! (a lil' more sarcasm). Ryan is 14. enough said. very rough year all around and I can't say how glad I am that it's over. limits were tested. He's a wonderful kid, who hit some pretty rough spots which turned my hair gray. I'm not a fan of this age, YET. BUT, I'm a fan of his and we're both learning as we move forward; definitely the hardest age to parent so far. I learned that sometimes tough love is exactly that - TOUGH - on everyone - especially mom. aiden's aiden, and truly as hard as we worked this year, he was the least of my worries, and he deserves a break right along with the rest of us. he's doing great, he's smart, and moving along on his path to success.

11. ya, I think I just wrote myself into canceling one of the extra therapies and going to Wisconsin for a bit. We could all use it. and even more fun, my grandpa will be 87 this month - and THAT'S reason enough to go, all in itself.

faith

2011-06-03T14:00:00.006-05:00

I am honored that others shared my last post on their blogs and FB pages. I am proud to be a part of such a wonderful community and I can't say enough about all the friends I've found through Aiden's journey. To have the support of people who just "get it", is indescribable. One of the first things I suggest to parents who are new to this journey, is to reach out, because it is the love and support from this community that can mean the difference of going insane to finding peace inside.

So yes, we worry. and yes, we freak-a-zoid out at times. it's a part of parenthood no matter what the situation, and sometimes it's just needed in order to move forward.

one of my inspirations, Jodi, whose son is quite a bit further in his hearing journey than Aiden, said it best on my FB page:

"you can worry about your future ... because your present is ok

... and that is a good place to be."

(LOVE this)

and in this post:

...Keep moving forward, because it is those lessons learned in the present,
the time and attention that you dedicate to loving your family and
worrying
that will prepare your child to confront all of those infamous worries that torment those free moments that actually give you time to think.
Keep the faith.

amen to that.

but know,

so much more than worry, we have HOPE, and we have FAITH. We are INSPIRED by those who have walked before us, ENCOURAGED by those who walk hand in hand with us, and only hope to provide GUIDANCE and a bit of PEACE to those who walk after us.

and with that said, please take the time to read THIS POST from another one of my inspirations, Rachel, who helps ease my worries about Aiden's future through her story and all her adventures. Make sure you watch the video by clicking on the picture at the top.

chills. tears. smiles.

"Faith is taking the first step even when you don't see the whole staircase."

Martin Luther King Jr.

just saying ...

2011-05-31T22:30:00.002-05:00

... most of the time it's fine. In fact, more than most of the time you

don't think twice about it. second nature like.

Get up in the morning, put on his cochlear implants,

just as you put on his clothes.

Talk to him, listen to him,

COMMUNICATE THROUGH SPOKEN LANGUAGE.

Therapy at the kitchen table becomes an everyday thing.

You call your husband excited about the discovery of a new word or sound,

and you cherish the moment together.

CIs are now a part of everyday life; a new normal.

as time goes on, you get past all "the looks and stares".

you THANK GOD ev-er-y.day for the miracle of CIs and

all the differences they've made in your child's life and

all the opportunities they've brought (and will continue to bring);

you THANK GOD ev-er-y.day for the fact that he can HEAR

and that when you talk to him, he comprehends,

even if he doesn't LISTEN to a word you're saying,

you know he HEARS you.

and when you confirm your initial thoughts, (and the equipment is just fine),

you chuckle, because he's no different than your two hearing kids,

in the fact that he TOTALLY has learned listening is a choice.

and you know it's the actual hearing part where the miracle began.

and mostly, there's this constant giddiness because of it all.

BUT, there are still THOSE moments,

MOMENTS, that may last a minute, sometimes an hour,

sometimes more than a few hours,

sometimes a whole freakin' day ...

WHERE IT ALL SUCKS.

Where all you can do is WONDER and WORRY,

about what's to come.

He's only THREE

hearing, two years.

You've come such a long way, yet have such a long way to go.

and of course you worry. Not all the time. Not a lot of the time,

but there are some times, you worry much more than others.

and sometimes that worry is hard to shoo away.

and even as you hear him talk to his siblings, or know he responds

as you call his name from upstairs and he's downstairs,

down the hall in the back room with the tv on,

there are still moments of worry ...

...what's to come when he's 6 and is not in an oral deaf program

with kids who are "like him", because you've worked so hard for him

to be a part of a mainstream classroom and

even harder that he NOT be defined by his hearing loss,

YET, all the six year olds see him as different.

Not only because of the equipment on his head, but

because it's much harder for him to listen and take it all in.

and you just pray and pray the teacher

teaches the class about UNIQUENESS.

not just his first year teacher in mainstream school,

but every teacher and every year thereafter.

...what's to come when he's 8 and he really starts to see himself as different,

and tells you he hates being deaf or asks why he has to be deaf,

when no one else in his family is;

or is scared to speak his voice to tell someone, "I didn't hear you," or

"Can you please repeat what you said?" because he doesn't want to stand out,

in fear of drawing more attention to himself when

honestly it wasn't his choice of not wanting to listen,

but the mere fact that he just didn't hear.

...what's to come when he's 10, and there are sleepovers.

and yes, he's been accepted, because you do everything.in.your.power

to make him a part of the community and to be included,

you advocate, you teach, you empower.

BUT, he's still DEAF and at the sleepover, he's not sure if he should

take off his CIs so not to miss out on the craziness that may go on after he

falls asleep and can't hear a thing.

...what's to come when he's a young teenager and all the kids are

going through puberty. the time when it's a known fact

that kids tease other kids,

and making fun of someone's differences is one way

of ignoring/getting past their own insecurities,

no matter how wrong it is.

you pray he has a good sense of humor, some good come backs,

and that it's not him who is the insecure one.

...what's to come when he's in his late teens and heading off to college,

to a WHOLE NEW community new to his world.

Having to take classes in HUGE auditoriums,

with 100's of classmates, and be able to understand

and keep up with everything the professor is saying.

because honestly, does the professor really care if he's getting it or not?

OR when he's in his college dorms and everyone is running out

because the fire alarm is going off and he's fast asleep, without his CIs on.

will someone stop to take the time to wake him?

You continuously teach him to be his own biggest advocate,

but even in doing so, you constantly pray and hope you are also teaching him

to always be proud of who he is and to use his voice.

as it is his voice that you've worked so hard at achieving.

it is his voice that you are thankful for everyday,

right along with every.single.ounce of hard work teaching him

to not just "hear", but to LISTEN.

just saying.

it's not easy.

I'm his mom. and no matter what,

I will always worry about the "small things",

that truly,

aren't.that.small.

for the LOVE of brothers

2011-05-27T06:32:00.007-05:00

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**

crazy busy days

2011-05-21T06:03:00.010-05:00

dear blog,

i truly do love you dearly,

but i love creating memories to write

about even more.

i promise i'll be back soon,

but until then, just a glimpse of the

memories being made.

a very special girl's first communion

and her cousin's (aka bff's)

(note how the girls are being goofy as Aiden shows them how they should be posing)

a very kick butt first communion party for the two princesses,

even if it did rain the whole time and

all the kids were covered in mud by the end of the night

a trip to the farm with aiden's class

(and one to the zoo, pictures on their way)

tumble/cheer class recitals

(note: putting make up on a 10 yr old for the first time is.not.fun)

spending as much time outdoors discovering, climbing, playing

(which I may still need to build that ark with all this rain)

and most of all ...

mom's here.

and when mom visits, I cherish each little moment of her!

see you soon.

Ten on Tuesday

2011-05-10T06:27:00.005-05:00

1. I seem to start all these posts with "It's been a crazy week", so I won't this time. This month HAS BEEN INSANE and it's not going to stop until summer break gets here. My calendar is screaming out in pain with the heaviness of all the ink! (YAY me though for actually getting this out on Tuesday!)

2. I'm busy finalizing odds and ends for the "Royal Princesses", I mean, my niece's and Kailyn's First Communion party this Saturday. When it's all said and done, we will have celebrated three Confirmations (two of my nephews' and Ryan's) and two First Communions, all within two months. Things Remembered has become my best friend.

3. Last week Aiden had AVT on Thursday and then audiology on Friday. Not a big deal if we didn't drive over an hour to AV and two hours to audiology. Gas prices + an SUV = one stressed out momma. Thank God we have family close by to camp out at.

4. Speaking of insane gas prices, I'm trying to cut down on my errand running and do more online. What is your favorite online (and practical) place(s) to shop?

5. Write it down in the baby book! Aiden cooperated for the whole audiology appointment! This was our last appointment until we head HERE, so I was SO thankful we got across the board results on the left, right, and bilaterally with a very cooperative three year old! (more to come on this in a separate post).

6. My mom will be here this week for Kailyn's First Communion and I cannot wait! She'll be with us for a whole week after. This will be the first time ever that I get to spend time with her A-L-O-N-E! I've either always worked while she visits OR one (or all) of the kids are home with me. Hmmm .... wonder what room we can redecorate/paint? (hint-hint)

7. Two field trips with Aiden's class are in my near future. Tomorrow we're visiting all the new babies at the farm and next week we're heading to the zoo. Fun fun!

8. I'm in the process of building an ark. Yes, an ark. This rain has been non.stop.and.I'm so.over.it! Yesterday we were given a 70 degree clear skies teaser day. I was so excited until I looked at the ten day forecast: rain, thunderstorms, repeat.fortenstraightdays. I thought I moved to Ohio, not Washington. Bright side - our grass is very green!

9. and with all this rain, brings all these weeds (in a field by our house), in which Aiden has become the official weed picker ... in his sister's shoes ... and jammie bottoms ... with crazy hair.

10. In the midst of all my craziness, I decided very last minute to take a mental health day (yes, I need these as a stay at home mom even more so then when I worked for a paycheck). and after those "oh so fun" state standardized tests last week, I let my daughter take one too. We started our day with a pedicure, had lunch at her favorite restaurant, then came home and enjoyed the sun as we prettied up the driveway with chalk. It was AWESOME and our piggies are flip flop ready!

The Toothless Wonder

2011-05-05T08:00:00.000-05:00

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.

A Special Community

2011-04-29T11:01:00.004-05:00

The day I started this blog, was the first day I took a deep breath, somewhat a sigh of relief, or a sigh of acceptance more to speak, over Aiden's deafness. It was after spending days upon days reading many other's stories reassuring myself everything was going to be okay. It was the day I said to myself, "OK, here we go." I started this as a journal, not only for myself, but for others. I wanted to be true to myself and to anyone who followed my emotional and physical roller coaster, of what was to be Aiden's story, on our journey to help him hear and speak.

I open(ed) my heart, sharing my deepest thoughts, heartaches, simply.amazing moments, lessons learned, milestones reached; sharing each small step taken, each set back, each triumph, has all helped me release my feelings. It was (and still is) my best therapy. In the same sense, I wanted to reach out to other families who were going through the same thing (whether before me, with me, or after me) - I wanted to be a part of a community who knew what I was going through, but even more so, to give back to a community that helped me see the light and provided me the strength I needed to move on.

I hope(d) Aiden's story would provide someone a sense of relief, a sense of "it's ok to cry my eyes out and say this all sucks!", a sense of HOPE that their child (or grandchild or niece or nephew or friend) may hear and speak one day too.

I want(ed) to provide an avenue of lessons learned and resources, but more than anything I want(ed) to provide the truths of a journey that is not an easy one, not a quick one, yet a simply.amazing one with a lot of hard work and true dedication.

Every once in awhile I'll receive comments on my blog, comments on Aiden's You Tube videos, a Facebook message, or an email from a new parent/professional/relative. Sometimes the emails are asking specific questions, sometimes they're thanking me for sharing Aiden's story, other times they're introducing themselves and their journey; a lot of times they are filled with emotion and I wish I could just reach out and hug the person. Each one touches my heart. Each one means a lot and I can only hope that my words back provide some sense of relief and guidance. There is a whole community out there once you become a parent or relative or any acquaintance of a deaf child. A whole new community to take a hold of and never let go.

We provide each other support and hugs when another is down - whether it's someone just starting the journey or it's three years into the journey and it's just one of those "I know my child's deaf and it still sucks" kinda days; and we provide each other high fives and more hugs when a child meets a milestone; we share tears in both happy, sad, and angry moments; we provide each other ideas when we feel like we've hit a brick wall. We watch each other's children grow up. and most of the time, we've never even met, but friendships are made, relationships are built ... ones that I truly cherish and know will last a lifetime.

we provide each other our arms of acceptance that, "I know exactly what you're going through and I will always be here for you," that not everyone looking into our world truly understands.

This community is beyond amazing.

I received a message that touched my heart on Facebook a little while back. This amazing person is from Italy and had been following Aiden's journey. As I read her message to my husband and mother-in-law, I was moved to tears. Here's a little piece of it.

"... my nephew was diagnosed only last march (he was 18 months old ) with profound hearing loss in both ears. He was born deaf like Aiden. Six months of hearing aids followed with practically no results and then last October he received Cochlear implant in his right ears . He has been hearing for 5 months by now and we have made good progress: he turns when we call his name and he's starting to say something ( vowels sounds, “pa” “ma”) He can hear now and that really is amazing and a miracle but sometimes it is so hard. ... I am so worried about him ... I would like to be able to find listening activities that may interest him and help him to speak more, I would like to be able to do much more to help him and his parents in this journey toward sounds and some days progress seems so slow ... then I read Aiden's blog and you can't imagine how this help, how encouraging it is to read about your journey and Aiden progress and success and well I really would like to thank you so much for sharing all this ....

I posted Aiden's video on my facebook homepage since it is so encouraging and I wanted my brother and sister in law ,and everyone else who don't know anything about being deaf, to see it and what amazing miracles can happen with a lot of hard work. You have a great family, Aiden is a lovely fantastic boy and you are a great mom and I really want to say thank you thank you thank you :)"

My eyes leak whenever I read this. One, it takes me right back to the beginning days, but even more so, this is a woman who has so much love for her nephew and has taken the time to research, to understand, to LEARN, to reach out in this vast support community. She is his aunt (his AUNT!) who has become one of this little boy's biggest advocates! I don't know this family, but I know this little boy is one lucky child to have an aunt who loves him so much and who will stop at nothing to help him hear and speak. HOW AMAZING IS THAT?!? and that's why my eyes leak.

and that's also why I love being a part of this community and being able to give back through our story.

Here's another message I just received this morning on Aiden's You Tube page from the video I made for Aiden's first hearing birthday, From Silence to Sound.

"This is absolutely adorable! I have hearing aids and have had them since kindergarten, and I've always felt different from everyone else. Until, of course I got to know my aunt who is also hearing impaired. But, even still, that feeling still remains, just at a slighter level. This little boy has given me an inspiration though. He has showed me that it's okay to be different, because that's what make you, you. Thank you so much for this video! :)"

and this is why I write, why I share Aiden's story through words and video. Not only to be a part of an AMAZING support group and for my own therapeutic benefits, but even more to see how his story is giving back, ENCOURAGING, providing HOPE and INSPIRATION, just as so many others continue to encourage and inspire and provide hope and guidance to me.

and for all of you, I am thankful.

Ten on Tuesday (or Thursday - late again!)

2011-04-28T07:05:00.001-05:00

C'mon Spring!

1. I am right in the middle of cleaning out the kid's winter clothes to see what they need for Spring/Summer. I am so blessed that my mom is a wonderful end of season shopper and all the loot she gets the kids for the next year. Aiden is totally set with tons of outfits, Kailyn just needs a few pair of shorts, and Ryan, well, he's another story.

2. Ryan's getting at that age where I don't even want to buy him anything because I usually have to bring it right back. I did buy him some nice cargo shorts and polos the other day and was surprised to see him wearing them to school. He's such a basketball shorts with t-shirt type of kid. He looked so handsome and I choked up at how much my first born is growing up (and has now surpassed my height - oh my).

3. Less than 7 weeks left of school until summer break. Where did this year go?!? Do you realize I'm going to have a 10th grader, a 5th grader, and a preschooler next year?!? Where does the time go?!? I'm not old enough to have a 10th grader! lol

4. IEP #2 is on the way. We won our fight with Kailyn's school and they finally tested her. We're thankful she does not have a learning disability, but the tests did reveal some other areas of struggle, which I'd been trying to tell them about all along. Why do some districts assume they know your child better than you?!? So effin' frustrating.

5. We had a beautiful Easter! Aiden had so much fun finding all the eggs. Unfortunately though, the Easter Bunny hid Kailyn's basket in the oven and in my hurry to get brownies in before church and before the kid's got up, I turned the oven on without realizing the basket was in there. Thank God Kailyn's daddy turned it off before it was totally preheated and nothing caught fire, BUT in the end, Kailyn's big 'ol chocolate bunny looked like the Wicked Witch of the East and was nothing but feet. Not cool (literally).

6. Funny story #2: The day before Easter I took the kids to the mall and stopped to see the Easter Bunny. While waiting, Kailyn whispers, "So mom, are you and dad really the Easter Bunny?" to which I tried to ignore in a line full of little kids and nonchalantly changed the subject and started talking about the cute baby in front of us. Kailyn then asks, "So mom, how do babies get in your belly anyways?" No more long lines with this girl.

7. Bella has an ear infection. Do you realize how NOT fun it is to try and put drops in a puppy's ears? She bit the vet. Thank goodness she worships me enough not to bite when I put them in. Guess the old saying is true, "Never bite the hand that feeds you."

8. We are loving Aiden's school! After a few weeks there, Aiden knows his days of the week (we've also been doing them in AVT and at home)! He recites them from Sunday right up to Saturday and when asked to find one out of order, he points right to it! Also, everyday when we leave he'll tell his teacher (Mrs. J), "Bye-bye J!" So cute!

9. In a couple weeks Kailyn will be making her First Holy Communion. This is a sacrament that is typically made in the second grade, but with all our moving the past couple of years, Kailyn's making it a little late. It has worked out perfectly though, because my niece (and Kailyn's BFF) is making hers this year too. SO my SIL and I are in the process of planning a nice celebration for our gals and their special day! It's going to be amazing!

10. I've been watching the horrible news about the weather down south and keeping all the families there in my thoughts and prayers. The weather everywhere lately has been insane and I can only hope it calms down for a nice peaceful summer.

Hope all of you have a beautiful weekend!

Listening, Language, and Speech Development: 2 Years Hearing

2011-04-26T09:57:00.004-05:00

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)

For the Love of Talking.

2011-04-15T18:00:00.002-05:00

yes honey. we all hear you.

As I mentioned in my previous post, Ryan's Confirmation was this week. We try to bring Aiden to church, to teach him what it's all about, but I have to say, for my own peace of mind, Aiden's daddy often keeps him at home.

So, let me set the scene. Catholic masses are typically just under an hour. Special masses, such as a Confirmation, can last up to a good hour and a half. We first sat in the "baby friendly" section (you know the part that is out of earshot of everyone else - you can hear the priest but no one inside can hear the babies), but then were told about an open pew, right behind the Confirmation class, so we went ahead and took the chance. We were smack dab in the middle of the church. As soon as we sat down, I handed Aiden his bag of books and when that didn't suffice, my iPhone (minus the volume, and which btw, he is totally addicted to).

and still, Aiden talked. and talked. and talked. When I would "shhh" him, his grandma would look and smile, but not say a word. He wasn't screaming, he wasn't being unruly, he was just - talking. Most of the time loudly, sometimes he'd actually listen to me and use his "whisper" voice. When they played music he would loudly hum along like he was singing; actually he would do this when the whole church was completely silent too. When his daddy would stand up, he'd yell, "Daddy, sit down!" and his daddy would have to sit down to get him to be quiet. When we'd take him to the "unruly kid" part of the church, he'd scream, "NO, INSIDE!" until we headed back to the pew.

Ryan and his aunt (who was his sponsor and therefore sat by him towards the front of the church) heard all.of.it and even turned around a few times laughing. People around us - some smirked, some didn't; some smiled, some just stared. I didn't care. It was my oldest son's special day and I was going to be as close as I could to see it all and anyways what three year old doesn't talk in church? Well, that day it seemed to be only my three year old.

On the way out, as we laughed about it, my mother-in-law said it best:

"How can you shush a deaf child in church when you're so blessed that all your prayers have been answered that one day he would hear and speak?"

Amen to that mom!

and I just have to know, do other CI/hearing aid moms and dads out there have a hard time "shushing" their child as much as I do? I have to admit, I SMILE very big every time I have to do it. Maybe that's why he never takes me too seriously.

Ten on Tuesday (or Wednesday)

2011-04-13T10:00:00.002-05:00

1. So I've skipped a few Tuesdays, but like I said, I'm not too great at keeping up with things like this ... just like I haven't posted a Wednesday Workout in awhile either. I do like these though because I feel I can summarize so much in one post. In the same breath, it takes away from me sitting and writing a more detailed one too. With our schedule lately though, these are great!

2. I'm throwing this post together quickly as I have so much to do (who doesn't?) Details below.

3. I talked to one of my sister-in-laws on the phone this morning for TWO HOURS! We talk nearly everyday. Everyone needs someone like this in their life - where you can talk and talk and talk (and laugh), and typically about nothing at all, and before you know it, two hours have passed. I can say though, while I talked, I also got two bathrooms cleaned, the downstairs dusted, and all beds made. Multi-tasking baby.

4. My mother-in-law and another one of my sister-in-laws are coming in today for Ryan's Confirmation tonight and then on Friday my SIL from #3 above and her family are coming in for the weekend (hence all the cleaning). Which is really why I should get off this computer and finish cleaning this house; but that two hour conversation wore me out and I needed a break. ; )

5. Have you heard of Pioneer Woman? Well, I found her photography blog looking for tips and am in awe with her talent. I couldn't find my mom's sheet cake recipe this morning, so as I looked up a recipe for Chocolate Sheet Cake (Ryan's favorite, and it is his special day so he gets a BIG OL' SCRUMPTIOUS CHOCOLATE CAKE - damn I need to get off this computer!) low and behold, I found out that this amazing photographer cooks too! I'm really going to love her site! (her recipe is similar to mom's yet a little different and they're both from Wisconsin so I'm sure it's just as DELISH!)

6. Aiden has finally figured out that he will not win our morning wrestling matches and has taken a completely opposite stance. Now he can't get enough snuggles or kisses. It makes our mornings so much prettier. All other behaviors are still the same, except he's added performing skateboard like tricks while in the bathtub like the walls are a half-pipe (is that what skaters call it?). On the plus side, the kid's bathroom floor gets wiped down every night. He's a maniac.

7. This is Baby. He is HUGE. His brother Bonesy (or Bonz) is just as fat (and believe me, it's not all fur, the cats have "muffin tops".) I really need to get these tub-a-lards on a diet now that winter is over. Especially with mousing season coming up.

8. I can't believe there is only NINE MORE WEEKS of SCHOOL! I'm not ready for summer! Although, I am getting very excited about our upcoming trip HERE. More to come in a separate post.

9. I was going to write a bit on Aiden's school, but I'll save that for another post. Who knows when I'll get to it, so I'll just say his teacher tells me he's talking all the time. Love it. This Friday they're putting on a little program for the parents. His class is singing "Five Little Monkeys Swinging from the Tree". He's going to be one of the monkeys - imagine that!

10. Do you ever have one of those moments where you feel God throws something in your lap right at the time you need it most? Yesterday I was driving along thinking about my dad (his birthday is coming up) and how I wished he was here for Ryan's Confirmation (and next month for Kailyn's First Communion). He was a very proud Catholic. He loved his religion and he'd be so proud of his grandkids. and I cried. and cried. and cried. and I got ANGRY he was taken from us so early. I was feeling sorry for myself. I miss him. TERRIBLY. Then last night, I was looking around the Internet and found this photography website (again in search of tips and ideas). What I didn't know is that I'd stumble upon the other blog she writes. She lost her brother and her baby. Her strength is amazing. Her words are amazing. Her FAITH and BELIEFS are AMAZING. This woman.IS.amazing. Her story gave me that boost I needed - cherish what you have (and I truly do, it was just one of those days). After I read her blog (and cried throughout), I went upstairs and gave each of my kids the biggest kiss on their head - you know the kind you just sorta hold on to and don't want to let go. I'm so blessed to have what I have. Enjoy today, kiss your kids and your husband, call your siblings, mom/dad out of the blue and tell them you love them, just because, you never know what tomorrow will bring.

I hope you enjoy your week.

cherish.

2011-04-07T10:43:00.005-05:00

(where I want to be)

Right now I am sitting at Starbucks. Alone. in an overstuffed comfy chair. Just me, my coffee, and my laptop. with nothing to do but enjoy. I have an hour before I have to pick up Aiden and whisk him off for a good hour plus drive for an AV appointment. I can't remember the last time I was in this type of situation. peace.and.quiet.

As I drove here my mind was calm, not racing like it usually is. I remembered back to when I was young, when I was constantly trying to define what kind of person I wanted to be, what career I'd hold, how successful I could possibly become, working for a big corporation downtown Dallas, if I worked hard at it. what my future looked like.

and I smiled ... or more like smirked ... and laughed at myself.

Because today, in my (later) thirties, I am finally reaching the point where I feel comfortable with me and where I'm at. I've learned that the person I am wasn't going to be predefined in my young twenties, but defined through life experiences and lessons learned along the way. I've learned that success isn't defined in how far up the corporate ladder you climb or dollar signs (although nice). I'm comfortable with my foundation, I'm peaceful, and

I LOVE my life.

Am I where I thought I'd be in my 20's? Hell no. In my 20's I was pure career. Finance major from a big 10 University on my way to becoming a successful business woman. I loved being married. Motherhood - definitely, stay at home mom - never.

and what does my resume look like today?

stay at home mom, soccer mom, speech therapist, cook, house maid, taxi driver, vet, nurse, psychologist (remember, the best therapy is free), moderator, wife, mother, daughter, sister, sister-in-law ... and the list goes on.

and (most days), I absolutely love it.

Today I got teary eyed. Teary eyed as I thought about who I've become and the family I have. I wouldn't change my current resume for the world. Nothing.Nada.Nilch.

I count my blessings every.single.day.

Believe me, there are still days I search for ways to get our from under it all and find ME again. There's definitely stress in my life. It happens. The important thing though is knowing my alone time is just as important as my family time and not to forget about me.

and that's exactly why I'm sitting here at Starbucks, alone, just me, my coffee, and this comfy chair.

cherishing the moment.

cherishing my life.

Testing the Waters at Three

2011-04-05T07:44:00.019-05:00

Has anyone seen my sweet little boy? Because I had this sweet two year old, but I think someone stole him and replaced him with this three year old who is testing every.little.thing lately. Oh, and this one comes with tantrums too. Oh yay.

As a mom of a kid with CIs, many things run through my mind. I wonder if his map levels are off - too soft or too loud, which both can be a cause for not hearing clearly and behavior problems (for my non-CI parent followers, remember Aiden hears through electrical stimulation. A "map" sets limits to these stimulations in order for Aiden to hear the softest sounds as well as comfortably loud sounds. Each map is individual to its user and can change over time which is why we frequent the audiologist). Another thought that always comes to mind is his receptive and expressive language. Is he understanding what we're saying to him? Is he frustrated we're not understanding everything he is saying to us?

I'm pretty sure his maps are fine. He repeats all lings perfectly. His speech is the same. He shows no physical signs of the maps being too loud (such as his eyes watering and/or twitching OR him not wanting to wear them). But then again, he was recently "turned up" and has said a couple random times (with a smile on his face and covering his ears), "It's too loud!" But he says it with the simplest of things, such as when Ryan, Kailyn, and I are talking together. Then there's the opposite spectrum where I'm having to repeat myself many times to get him to listen. I call this three year old selective hearing though.

I know he's understanding us.

For example, yesterday his sister was laying on the floor watching Disney channel. Aiden was playing beside her, picked up one of his toys, and threw it at her to get her attention. His daddy stood up immediately, told him to, "Come here," which he did, then told him he needed to sit in time out for hitting his sister. Aiden, without any physical direction, went directly to the steps (his head hanging low as he knew he was in trouble) and sat down. After his two minutes were up, his daddy called for him and told him he needed to tell his sister sorry. Aiden went right over to Kailyn, gave her a hug, and said, "I'm sawy."

This morning I nearly had to sit on him to get him dressed and ready for school. He did not want to take off his pajamas, get dressed, get his shoes on, etc and fought me tooth and nail with everything I tried to do. A solid 40 minute tantrum. Do you know how hard it was to put him on a bus after all that?! Part of me couldn't wait for the bus to drive away with him and part of me wanted to sit down to hold and hug him to make it all better. He fights going to bed (which he's really never done before), he tells us "no" to everything we tell him (and I remember being worried he'd never say NO - oh my), he's not eating his dinner, taking him to any type of store where I can't strap him down in a cart is completely out.of.question, and the list goes on.

I think I have a very active three year old who is showing his age, his attitude, definitely testing his limits, and is trying to take over my household.

I think Aiden is VERY strong willed and VERY strong physically. Whew, he nearly won that wrestling match to get him dressed this morning and it definitely counted as my daily workout.

I think I'm still going to put a call into our audiologist to let her know about the recent behavior changes. Just.in.case.

I think I'm truly going to enjoy lunch with the girls today, and I know I'm having a margarita.

Even with all this, I do have to say, the sweetness is still there. Many times a day, he'll run up to me yelling, "MOMMY!" like he hasn't seen me in years, with a big ol' smile, and his hands held out ready for a hug and a kiss.

I think it's part of his plan to get away with all the other things he's been pulling. Call me a sucker, cause it works.

Ten on Tuesday

2011-03-29T09:00:00.001-05:00

1. We're on VaCaTiOn! It is Ryan's and Kailyn's Spring Break so we headed to Myrtle Beach. Weather is absolutely nasty, icky, blah, BOO. As bummed as I am, it's still nice to walk outside and hear/see the ocean (even at 40 degrees outside) and even nicer to have family time with no schedules, appointments, or practices.

2. Today is supposed to be a high of 61 and completely sunny. Can you say BEACHBOUND?!? I need my sunshine fix.

3. and even with the cold rainy weather, Kailyn and her daddy are such T-R-O-O-P-E-R-S. They are not letting this weather ruin their vacation. My daughter is a fish and weather is not a factor. On a 40 degree night she "dared" her daddy to jump in the outside pool, which of course he couldn't back down on, and she was right in after him. Insane.

4. I'm upset with myself that I didn't plan better and get Aiden the aLOKSAK for the beach. I've read on many people's blogs, like here, and here, and here, who have used this so their child can still wear their CIs to hear while they swim. It scares me. In the same breath, I want Aiden to HEAR and learn the sounds of the beach as he plays in the sand and runs through the waves. Next time for sure.

5. Simply Amazing Moment #1114 - Aiden's daddy turned the radio on and as he turned it up, Aiden, smiling that lovely shit eating grin he has, covered his ears and yelled, "IT'S TOO LOUD!" LaUgH aNd LoVe!

6. I luuuuvvv my coffee in the morning. I love it even more when everyone is still sleeping and it's only me, my coffee, and my computer. Complete peace.of.mind. Now if I can just figure out how to bottle up the sounds and view of the ocean and take it home with me.

7. My mother-in-law is with us on our trip. She is AMAZING and what I consider the ultimate mother-in-law. I'm lucky to have her. Selfishly, it's fun having her to ourselves (remember, my husband has 11 siblings which = 20 grandkids).

8. As I watched the news last night I was saddened by the fact that the LAST thing they showed was one of our U.S. soldiers, returning home from the Middle East, surprising his five year old daughter whom had no clue her daddy was about to walk through the doors. These moments are priceless. Why wait to the end? Don't they know that by the end people have already changed the channel sick of hearing all the "bad"? I think we need a channel dedicated to nothing but "happy" news. Who's with me?

9. I really enjoyed THIS book. I see they're coming out with the movie yet have no intentions of seeing it. The book was so good and I'm scared the film will ruin it for me.

10. I love everything about vacations - spending good quality time together, exploring new areas, playing games, laughing, building our relationships and FoReVeR memories - TOGETHER, as a family - with NO distractions. Pure bliss.

Two Years Hearing

2011-03-22T10:00:00.003-05:00

I will never forget the day I held Aiden in my arms, just hours after his "profound hearing loss" diagnosis. I muted the television as I called for Ryan. As I waited, I sat in complete silence admiring my sleeping baby, then looked back up at the tv. I will NEVER forget that moment. My stomach completely churned as I sat there and watched the people on tv, their lips moving, - I could tell they were arguing, things happening all around, yet I heard nothing. It was then that Aiden's reality hit me - his world was SILENT. My heart raced, dropped into my stomach. I felt sick, like I was punched in the stomach. I couldn't fathom my son in a silent world. My mind raced - he may never hear my voice, and just the same, I may never hear his. This couldn't be happening.

I was TERRIFIED.

Today, as I look back over Aiden's hearing journey, I take a long deep breath. It's been a long haul, some parts of the journey smooth, other parts bumpy, we've hit dead ends and forks in the road with no clue which way to go. It's been full of running to nonstop appointments; understanding his equipment, mapping sessions and FM systems; attending seminar after seminar learning all about Aiden's world and HOW to speak to our son in order to create a language rich environment; then add in daily Ling checks and learning to listen sounds and experience books. Overwhelming to say the least.

Most of all though it's keeping HOPE and FAITH, knowing our son will hear and speak, that he will attend mainstream school and be as much a part of this hearing world as the rest of his hearing family. We know the "equipment" alone will not accomplish this - it is up to us, his family, to TEACH him, to guide him, not only to listen and to speak, but to cherish the beautiful sounds our world has to offer.

and that's what we've been doing, as his family, for the past three years - taking each day as a new day, step by step, showing Aiden the way.

So today, when I think back over the past three years (two years hearing), I cry. Not tears of sadness, but tears of complete and pure happiness. This journey is not a sad one - it is a JOYOUS one - as we watch Aiden discover new sounds, speak new words, SING, and DANCE. This journey is not an easy one - it is a lot of hard work - but every ounce of effort, every sleepless night, every bit of research to find new language and listening activities is worth hearing that sweet little voice. This journey is not a sprint - it is a marathon - and we still have a long ways to go. This journey is - SIMPLY AMAZING - as we watch Aiden do things every.single.day that at one time, we thought he'd never do.

In honor of Aiden's two years hearing (which was actually March 9th -just catching up), I've attached some of my personal favorite SIMPLY.AMAZING Aiden moments. Smile with me as you watch just how far our boy has come in his hearing journey. We are so proud of you Aiden Robert!

Aiden's First CI Activation

Four Months Hearing - Aiden's First Word

10 Months Hearing - Face Parts

13 Months Hearing - "Ryan"

18 Months Hearing - "It's Stuck"

22 Months Hearing - "How are you?"

Choosing a Preschool

2011-03-16T09:03:00.004-05:00

I started looking into preschools for Aiden as soon as we moved to Ohio. Even though Aiden wasn't even two at the time, I wanted to get a good feel for all of our choices. As an AV (auditory-verbal) family, we were hoping that Aiden would be ready for a mainstream preschool since we started this journey, but looking at all our options, decided Aiden would do best in an oral deaf preschool setting for many reasons, the main one being it is what we feel is right for him at this time in his journey AND what is right for our family.

We had many options to look at, from our local district's preschool to the Ohio School for the Deaf (OSD) to a near-by school district's deaf ed program to an auditory oral school to a program that offers both oral and total communication options. We are lucky to have so many options, but the hard part was choosing which one was right for Aiden.

I toured three of these programs, and although I still want to tour OSD (for the experience), it was not an option we considered since they are voices off for a good part of the day (although I have heard they are starting an oral program). We are a completely oral family (with use of basic signs when his CIs are off), and therefore were obviously looking for an oral deaf program.

When looking at preschools, some things I considered were: the educator's expertise/understanding in teaching children with hearing loss, teacher:student ratio, days/hours per week, curriculum, available support services within program, physical and learning environments of classroom, and of course, modes of communication used.

I found THIS checklist very helpful and brought a copy along with me to each preschool visited.

I won't go over what the other preschools offered in our area, but I will say we didn't choose the preschool where 1) one of the teacher aids said to me, "Oh, he has those "ochlear things", 2) I had a hard time understanding one of the teachers, and 3) when I asked if the speech therapist was trained to work with deaf kids and would work with Aiden on language, was told, "Ya, speech, language, same thing." This is why preschool visits are so important.

Here is what the preschool we did choose for Aiden offers:

Oral program, with classes five days a week from 9:00 to 3:00 (or parent can choose 1/2 day and pick up before nap. He goes half a day now, but next fall he will go all day, and while I still think this is quite a long day for a three year old, the last couple hours are spent napping/resting, which he doesn't do at home, so I figured he'd be a "gentler bear" at home if he gets rest time at school PLUS then the bus will bring him home!)
Student:Teacher ratio - Preschool One - between 6-8 students with hearing loss to one teacher and full time aid (Aiden's class also has one typical hearing peer); Preschool Two - 8 students with hearing loss and 2 hearing peers to one teacher and one full-time aid.
All teachers have masters of education degree with concentration in deaf education
Auditory training and Ling checks done everyday with classroom teacher, individual speech therapy provided twice a week outside of classroom.
Onsite PT and OT (if evaluation determines these services are needed, they are written into the IEP - which Aiden did qualify for PT and will receive 90 minutes a month)
Full time audiologist with on-site sound booth
Morning Message literacy program - a good basic start to literacy focusing on the weather, the calendar, and a message from the teacher to the students. They identify upper vs lower case letters, punctuation, words vs letters during this time. The class also has a daily math or science lesson, story time, and incorporate a particular theme throughout the day (right now their theme is Springtime).
Specials are also included such as art, music, library time, cooking, and pe.
Playground is CI friendly - foam instead of mulch, metal slide instead of plastic

We will also continue to see our wonderful AV therapist on our own two times a month and if needed, add back in our speech therapist from our EI days.

I think the most important thing when choosing a setting for any child is feeling it's the right fit and we felt in our hearts this was the right placement for Aiden. It has so much to offer and we're so excited to watch Aiden soar through these next steps in his hearing journey.

First Day of Preschool

2011-03-15T08:34:00.000-05:00

(the preschool Aiden attends has completely oral and total communication classes - I LOVE this sign when your first walk into the school)

WOW. This has been an emotional couple of weeks:

Aiden's last week home with me was last week (he is the only one of my children I've stayed home with so it's been hard to let go)
Aiden's last therapies with all his wonderful ECI therapists (throughout last week)
Aiden's second hearing birthday was last Friday (3/11)
Aiden started preschool yesterday (3/14)
Aiden's birthday is this Thursday (3/17) - our lil' Irish man is turning THREE! (Speaking of which, will be a GREAT day to unwind from all this and enjoy the parade and green beer with my husband! Oh, and have some birthday cake too! : )

With everything going on, I haven't had time to blog, but guess I'll have some time on my hands now that Aiden's in school half the day. My sidekick is going from toddler to little boy way too fast!

The hardest part is he has to get up so early to catch the bus yet doesn't like to go to sleep at night (last night he was playing in his room until TEN!) At first I said no bus, but my husband put it in perspective for me how far we live from the school, how much gas prices are rising, how I have two other kids to get off to school, how cool Aiden will think it is to ride the bus ... okay, so he won and I agreed to let Aiden ride the bus. I rode with him the first day to make sure it was all good though. and he did GREAT. He LOVED it and it truly does make life easier.

As I walked down to get him from his classroom yesterday afternoon (he will only go half days the rest of this year and then start full days next year), I saw they were still in music class, so of course I stood and watched. There was my Aiden, right in the middle of all the kids (they attend specials - art, music, cooking, library - with all the preschool 1 classes) DANCING with a BIG OL' SMILE on his face. My heart melted. His teacher said there were no tears all day, he got right in with all the kids, and had a GREAT first day! He ran right up to me with a big hug when he saw me, but as I gathered his things, he tried to run back into the music room to be with his classmates! Priceless.

When we got home, I was cleaning out his backpack and came across a picture of a Shamrock he colored. At the top the word "Shamrock" was written and on the bottom the teacher wrote his name. I was complementing him on his coloring when he took it from me, pointed to his name at the bottom, "A-i-d-e-n, Aiden!" (he's been doing this for awhile at home), but then he pointed to the picture and exclaimed, "Shamock!" and proceeded to point to the word at the top, "s-h-a-m-r-o-c-k, shamock!" and smiled ear to ear!

This morning when I got Aiden up, I told him it was time to get ready for school and he said to me, "unchbox and bahpah." He was ready. After breakfast, Aiden eagerly waited for the bus and no tears were shed as I walked off after getting him all buckled in.

Yes, I believe he's going to do just fine. And honestly, this time to myself seems like a pretty good deal!

Wednesday Workout - Helping with Housework

2011-03-10T06:34:00.008-06:00

I know ... a day late. It's been one of those weeks!

Since I stay home, I have the "luxury" (ya, whatever) of doing housework every.single.day (not that working moms don't have this "luxury", my "luxury" is being able to do it throughout the day and not at 10pm at night like I did when I worked full time). Anyway, Aiden "helping" (I use this term very lightly) with housework has been one of the best language builders, even if it takes me three times as long to get anything done.

Laundry - Not only is laundry a good sorting activity, it has helped teach him articles of clothing, the difference between a wash machine and a dryer, colors ("put all the BLACK clothes in this pile"), possessives (daddy's shirt, Ryan's pants), verbs (washing, drying, pouring, taking out, putting into, folding, putting away), adjectives (wet, dry, dirty, clean, dark, light, big, small). His favorite parts are throwing the clothes in the wash machine and destroying the laundry basket full of clean folded clothes ... ya, this part's not so fun and is one way he learned the words "not nice" and "angry" too.

Aiden "helping" with the laundry.

Dishes - Aiden LOVES to help put away the clean dishes from the dishwasher. Again, not only has this has been an excellent way to teach him the names of all the dishes but also opposites such as small vs big, clean vs dirty, empty vs full. While I am making dinner, I can ask Aiden for a BIG spoon, and he knows exactly which one to give me. He also loves to help set the table, again teaching all the silverware names and short sentences (daddy gets a big fork, Ryan needs two napkins etc).

Cleaning his toy room - I have to admit, he's not much of a destroyer. He likes things in the right place and tidy. BUT, that doesn't mean he's never destroyed. At times he'll go in there and empty every single toy bin for no apparent reason what-so-ever except "just because". I've actually done it a couple times myself with him just as a learning opportunity. This is a GREAT way to teach SORTING into CATEGORIES - animals (and you can get even more specific with jungle vs zoo vs pets vs farm), vehicles, music, food, balls, building blocks, baby items, furniture, etc. An idea I learned from the John Tracy Clinic Distance Education Courses is to label the toy bins with a card showing pictures from that specific category.

It's been much worse.

Grocery Shopping - This truly is the best therapy ever. In fact, I always say our trips to Costco are well warranted, killing three birds with one stone by getting shopping done, a therapy session in, and the best part, LUNCH! Truly though, grocery shopping, as much as a hassle it is with a toddler, is a wonderful therapy session all in itself. This is how Aiden has learned the difference between fruits and veggies, what each fruit or veggie is (he can finally tell the difference between a tomato and an apple) plus much more ... put in, take out, cash register, money, receipt, push the cart, pay the clerk, STOP throwing it OUT of the cart, that's not nice, SIT DOWN, mom's getting angry, and on and on (okay, so great therapy session for toddler, but after all is said and done, mom deserves a day at the spa).

Then of course there are the little things like helping to empty bathroom trashcans (aka, mom picks up a trail of trash from bathroom to kitchen), dust, sweep (Aiden LOVES to sweep - inside the cat's litter box), feed the cats/dog (then pick up all the spilled food) ... all of which is filled with language opportunities AND the look on THEIR face (not yours) when they know they've "helped" accomplish a task is truly priceless all in itself.

Ten on Tuesday (a day late)

2011-03-09T06:39:00.008-06:00

1. One of my newest favorite pics - I am in LOVE with those baby blues. My dad, who was a die hard Michigan fan, would cringe though seeing his grandson in an Ohio State hat.

2. Aiden got his baby blues from both his grandpas. I've been missing my dad "extra" this week. I've never lost someone so close to me and when you do, it gives a whole new perspective of life. I miss our conversations the most - even if he drove me crazy with his million phone calls a day - not a doubt in my mind though how much he loved us. He'd be so proud Aiden, even in that Ohio State hat.

3. Aiden starts school in five days counting. I started Monday and Tuesday off crying just thinking about it. By the end of the day yesterday, I was counting the hours ... the boy was out of control. Needless to say, no tears this morning, OK, just a few. What is up with my emotions this week!?!?

4. With Aiden starting school, I dedicated this week as a week of fun. No ABCs and 123s. We still have formal therapies, but I decided no at-home therapy. Our time together is going to be spent at fun places with friends, building towers, and I think we'll check out THIS place too.

5. My list of things to do during my ALONE TIME (don't those two words have a beautiful sound to them), is growing - paint the kid's bathroom, start a morning workout program (ideally a cheap, local yoga class), organize the basement, learn the insides and out my newest purchase (a digital SLR camera with hopes to achieve a goal I've always wanted to pursue, but have always put off) ... first though, I think this mama deserves a spa day!

6. Taxes. I procrastinate them EVERY.SINGLE.YEAR. I don't know why, we've never had to pay, and all I have to do is organize our information. Why on earth would someone procrastinate doing something that's going to put money back in their pocket? Drives me insane. Guess I should add that to my to do list above ... right after the spa day.

7. I miss my mom and grandparents. TERRIBLY. (I think it has a lot to do with #2 above). If we didn't have a vacation already booked for Spring Break, we'd road trip it to Wisconsin. As soon as the kids are done with school though, we're there and I cannot wait. Everything about Wisconsin makes my heart warm and my stomach giddy - it's part of my definition for L-O-V-E.

8. Aiden's articulation is really coming along. He's starting to firm up some words, for example, mommy. It started as a good "mama", then went to "mahee", then to "mannee", and just recently I'm hearing a perfect "MOMMY" and it makes my heart melt. Yesterday, I sneezed and he said, "Es you mommy", my eyes watered - just one of those moments (and see #3 above).

9.We took a roadtrip to Cleveland this past weekend to celebrate my nephew's Confirmation, my husband's and SIL's birthday, and Aiden had an audiology appointment . Fun times as always. I need to remember though, that being out until 3am doesn't work for me anymore.

10. Aiden's audiology appt. went well. He is finally starting to somewhat participate in the booth again. Stickers are key. His audiogram was nice - between 20 to 30 db across all frequencies, so they fine tuned him and gave us a new program to work with. I'm sure it was better though because throughout the testing we had to keep telling him, "Shhh, listen", because he wouldn't quit jibber jabbering or humming and singing. Seriously, how can I get upset at my deaf child who won't quit talking or singing long enough to get a good audiogram!?! LOVE IT!

Just Because ...

2011-03-03T06:08:00.005-06:00

He's SO dang cute!

I'm his mom - I'm supposed to say that : )

AND I was so busy yesterday hanging out with Aiden AND his daddy,

who took the afternoon off to spend with us,

that I forgot to post my Wednesday Workout!

So thought I'd share the TRUE Wednesday Workout.

(sorry about image quality ... it's what you get with an iPhone and no flash).

Ten on Tuesday

2011-03-01T11:00:00.003-06:00

1. I started my morning advocating for my daughter for the umpteenth time at a meeting with the district preschool/elementary psychologist (who looks like he just graduated from college and has NO kids), her very accommodating teacher, and team. As the principal shared the two page letter I wrote, he called me "very organized and detail oriented". I walked out of there like Ray's wife from Field of Dreams after confronting town hall and winning. Testing will start today.

2. Potty training. Not going well. Four days and nothing, not even a tinkle in the pot. So thankful though for the multiple pairs of Hanes sweat pants my mom bought Aiden - easy to pull up and down, wash well, and very absorbent. Perfect for potty training.

3. Everyone's finally healthy in the family - except mom. I guess I'm glad it saved me for last. It's hard to take care of a sick family when you're sick yourself. Between coughing and Aiden still not sleeping through the night (like since he was born), I got little to no sleep last night. If I could only call in sick and lay on the couch all day finishing this great book I'm reading.

4. Ryan is shaving. Not like once every couple weeks, but like a couple times a week. Seriously. It's more than puberty stubble, and since he has such dark hair you notice every little bit. If it were up to him, he'd let it keep growing. He says he's going to grow a beard. Gotta laugh at that, but he probably could. He's 14. *deep breath* My baby is growing up way too fast.

5. Kailyn has decided she wants to be, as she calls it, "a sports chic". This is my very girly-girl talking. When she was younger, we tried t-ball (in which she'd walk clear across the field to go "talk" to a boy on her team in the middle of a play), we tried soccer (in which she said, "there's so much running, and I sweat!"). So what's changed? The CUTE BOY at school plays soccer at recess, so she's joined in and has decided she LOVES soccer and has begged us to sign her up. So we did. I hope she continues with it, it'd be so good for her all around.

6. Where did February go? I can't believe it's already March. March has many celebratory dates for our family - hubby's birthday, Aiden's hearing birthday, Aiden's birthday AND St. Patty's Day, four extended family birthdays, Spring Break, a Confirmation, and something I'm sure I'm forgetting. Guess I need to start a spending budget just for this month.

7. Speaking of birthdays, I cannot believe Aiden is almost three! In 8 days we'll celebrate his SECOND HEARING BIRTHDAY, in 13 days he'll start PRESCHOOL, then in 16 days he'll be THREE! Lots of happy tears anticipated for this month.

8. Spring is almost here and my fever is burning hot. I'd really like to plant a garden this year. I never have before and have no clue where to start. I'm becoming VERY picky with what fruits and veggies I buy at the store and feel like everything I look at is grown outside the US. How can that be fresh and I can only imagine what is keeping them looking so. Plus, there's nothing better than homegrown veggies! Suggestions on where to start?

9. Now that we only have two weeks left with our county therapists, Aiden has decided he's finally going to show them what he has to say. For the last few months he has been completely silent during therapies, listening to what they ask, but not responding verbally at all. The last two sessions, he's been showing them he can speak. Of course he is, he knows he's on his way out, and he's going to leave them wanting more. That's my boy.

10. During our "fun work" time yesterday, Aiden and I were playing a game with the alphabet flash cards practicing the letters and their sounds. Out of the blue he quit TELLING me what the pictures on the cards were, and instead started SIGNING them, watching my reaction every time he did a sign. I gave him none. I was actually shocked how many signs he knows because we sign very little with him. Oh the power of Signing Time AND my two year old. Little stinker.

Introducing Aiden - A Booklet for the IEP Team

2011-02-28T13:00:00.000-06:00

Well before Aiden's IEP I reached out to some of the other CI mommies to get advice and guidance for a successful IEP. A few of them told me how they created a binder with all of their child's information to present to the IEP team. I thought this was an excellent idea to hand out to everyone at the meeting.

The people who evaluated Aiden (the psychologist, speech pathologist, audiologist, PT, and OT) had never met him. It's these same people who will be a continuous part of his team, working with him day in and day out to meet his goals. I wanted to provide them something at the IEP that would give them a glimpse of who Aiden is before he starts school.

Even more so, I knew our district would be there and make a decision of whether or not they agreed to fund Aiden to attend a preschool outside the district. These are the same district representatives who will be at every IEP meeting we have and the same representatives who will decide when they want to stop sending Aiden out of district.

So more than anything, I wanted these representatives to understand that Aiden was our child first. I wanted them to know what our hopes and dreams were for Aiden. I wanted them to know WHO Aiden was and that to us, as his parents, we will ALWAYS go above and beyond to make sure he receives, what we believe to be, the best placement for him.

Here's what Aiden's booklet consisted of:

Cover - I put a picture of Aiden, our names, his birthdate, date he was implanted and where, CI brand, and activation dates.

First tab: Introducing Aiden - Background on Aiden (where he was born, brothers, sisters, pets), then wrote a paragraph on "Our Favorite Aiden Qualities" and one on "Our Hopes for Aiden". This is what I wrote.

Second tab: Timelines - Detailed timeline of his hearing journey from the date he failed his newborn hearing screening to our latest mapping issues and fixes; a timeline on his language and speech therapies; a timeline on his gross motor developments/therapies (since he's been in PT since birth), and a paragraph on his sensory integration/OT history.

Third tab: Current Goals/Evaluations - Included a copy of most recent evaluations, progress reports, goals from each therapist (speech, AV, PT, OT, and Regional Infant Hearing Advisor). I also included the most recent IFSP evaluation and write-up.

Last tab: Audiograms - copies of all his audiograms (especially since they have an on site audiology suite with a full time audiologist).

Instead of having them professionally copied and bound, it was WAY cheaper to buy my own report folders and make my own tabs (well over $50 cheaper!)

Everyone found it very helpful and the school even asked for an extra copy to provide Aiden's teacher (who wasn't at the IEP since Aiden wasn't "officially in" her class yet). I also made a couple extra copies for myself to use and update as needed for new therapists/teachers.

Two weeks and counting until he starts. Can you believe it!?!

Resources for IEP Prep

2011-02-26T08:00:00.001-06:00

Even though we had strong intentions our school district would not fight us to send Aiden to the oral deaf preschool we chose (since they do not have a program for kids with hearing loss outside of their special education preschool and most of the district's hearing loss kiddos attend here), we still wanted to be prepared all around.

In preparation for Aiden's IEP, I read, and read, and read. In essence, I wasn't only reading to educate myself for Aiden, but also for his sister. It is through our struggles to get my daughter evaluated that I have come to understand the laws better and have learned that two things every parent going through this process should do:

1) communicate all requests in writing, and

2) write/keep EVERY.little.thing down in a notebook/folder, from phone conversations to meeting dates and outcomes to dates any letters were sent and received to copies of emails etc.

Here are some websites I found helpful throughout Aiden's and his sister's IEP/request for evaluation process:

Wrights Law (a leading website on special education law and advocacy) and on THIS page within the Wrights Law website, there are tons of links for FAQs on IEPs.

THIS chart shows a table differentiating the IFSP and the IEP.

Did You Know? - a great sheet to hand to your child's educational team with facts on cochlear implants.

IEP Checklist

A Parent's Guide (this is a simple parent's guide I found helpful)

Go HERE for a good overview of the steps in an IEP process.

This IEP Goal Bank and this one are both good sites for sample speech and language goals. The second link also has sample goals for all areas. (I went into the IEP meeting with auditory, articulation, language, gross motor, and social/pragmatic goals/objectives based on what we've been working on in AVT, speech and PT - remember, parents are a part of the IEP team. WE are there to help set goals and objectives too!)

Are there any websites that you found helpful through your child's IEP process? If so, please leave the website in the comments section to help other parents going through the process.

I also created a getting to know Aiden booklet to bring with me to his IEP meeting. I will post about that next.

Wednesday Workout - Aiden's Experience Book

2011-02-23T20:30:00.001-06:00

The experience book introduced to us by our AVT is not quite the same as the ones I've read about or made in the past. It is not one book on one subject, but a big binder full of daily experiences and lessons we're working on. Aiden's AVT started this with us and we not only use it at home, but also in therapy. It is a wonderful tool to help facilitate conversational speech, story telling, and it is a great means to building a strong literacy foundation. (oh, and it can serve as a great scrapbook for mom too!)

The ultimate goal is to get Aiden used to, and excited about, bringing his "story book" to therapy to tell Dr. Don all about an experience from that week. Kids are typically more excited and more apt to talk about something they've experienced, know, and understand. Depending on how long we're in AVT, once Aiden gets to an age where he can draw his own pictures, he will, or tell me about an experience in his day that he wants to add to his book.

Creating one page a day can be overwhelming, so Dr. Don and I decided to make one personal experience page a week and one learning/theme page a week. Before I make the page, Aiden and I always talk about the topic first then make the page together.

Situations we currently incorporate into Aiden's book include:

Emotional Experiences

(Today he fell off his sister's bunk bed, so I need to make a page on that for this week. This is when I cut my thumb and Aiden was upset about it).

Special Days

(birthdays, holidays, grandma visiting, etc.)

Fun, Interesting Daily Type Events

(we make warm cookies a few times a week for bedtime snack)

Changes in Aiden's Life

(for example, I'm in the process of making a few pages about starting preschool. Here's one I made to help Aiden understand why Ryan and Kailyn left everyday when school started up)

Future Events

(for example, we're heading to the beach for Spring Break, so I'll make pages on packing luggage, riding in the car, pictures of the beach etc)

Social and Hygiene Skills

(for awhile, he was constantly eating his boogers - ewww!)

Themes/Specific Lessons

At Aiden's age, a lot of our pages are based on themes/learning experiences (colors, letters, bears, sequencing, holiday vocab., or whatever the "theme of the week" may be.

As you can see from our example pages, it doesn't have to be hard and time consuming.

Some things I do to create these pages with ease:

Use clip art, printable from websites, and magazine pictures. I'm no artist, so if I don't have a picture readily available of Aiden performing the task we're talking about, I find it on the Internet or in a magazine then I ....
Draw stick figures with a picture of one of our faces for the head. You can find great online photo print specials. I pick a few pictures of the family with good head shots then print tons of them so I can cut out our heads and use them throughout the book.
Use cardstock for the pages, it's much sturdier. Oh, and I make sure the experience we're talking about is on facing pages (so I use the front and back of each sheet), like we're opening a book and don't have to flip the page as we talk about it.
Use descriptive words, vocabulary you want them to learn, coloring book pages, and printables to help with themes
Keep and use items that represent an experience and gives the story an even more personal meaning, i.e. movie ticket stub, postcard from a place visited, wrapping paper, a card received, picture from the package used (ex. picture from the brownie box), invitation, etc.

Items I Keep on Hand

(I keep all my supplies in two shoe boxes, so when we sit down to make a page, I have all my necessary supplies in one spot).

stickers and/or specialty paper (this is an easy way to make a quick page to talk about holidays, animals, etc)
ziplock baggies (to hold pieces for some pages - for example, we made a snowman on one page and I would have Aiden dress up the snowman with different color scarves, mittens, hats that I cut out for it, so I stored all the snowman's clothes in the baggie.)
Crayons, markers, sharpies, glue, hole punch, stapler, tape, scissors
Laminator (great investment)
any misc. items collected to use one day -i.e. bubble wrap, magazine clippings, clearance holiday items to use for the next year)

There are a lot of great websites, but some I enjoy for themed units are:

dltk-kids (a non-member site with tons of preschool activities, holiday crafts, and printables)
Daycare Resource (a member site, but they do have some free printables)
Making Friends.com (non-member site, many printables for paper dolls)
Preschool Printables (non-member site with tons of fun games, ideas)
Hubbard's Cupboard (non-member site with good lesson plans and printables for different preschool themed units)

Ten on Tuesday

2011-02-22T21:16:00.005-06:00

Okay, so I'm joining the bandwagon of a few of my favorite blogs. I love reading posts like these, just not good at keeping up with a weekly theme. So if it's here again next Tuesday, "Yay me!", but good chance it won't be two Tuesdays from now.

1. I can't believe I completely forgot to write a blog post about "THE BINKY!" Aiden has been binky free for nearly a good month now! CAN I GET A WOO HOO! We were losing them left and right and I refused to buy new ones. So after the last one disappeared (and believe me, I had NOTHING to do with it, although I'm sure "the other parent" may have), he was done. I found two of them within a week and immediately threw them in the trash (well actually, I stashed one for emergency purposes, but it hasn't been needed). How 'bout my little man going cold turkey?!? I think I miss it more than he does.

2. I am a list maker. I run in circles if I don't have my list. There could be 1001 things needing to get done, but if I don't have a piece of paper with every.little.thing written down, I start on lots of little things, but accomplish ZERO. ZILCH. NOTHING. I also like the physical (and very mental) aspect of crossing things off my list as they're completed. I know, OCD/ADD/whatever ... yep, a little (ok, maybe a lot) of each, but someone needs to take control and get things done.

3. Aiden starts preschool in 12 days and counting. Secretly, I am so excited. I hate to lose my little sidekick, but the boy is becoming quite unruly these days and listens to ZERO. I've had to come up with a timeout chair - which he sits and laughs at me as he sits there. I have seriously thought of telling him to take all his clothes off and run around naked just for the mere fact that he would then let me dress him without going 10 rounds. Anything I say, he goes completely against. I think aliens have taken over my son's mind and body.

4. Kailyn and I had the best girl's day this weekend. We started with each of us getting an eye exam (I know, not so fun, but poor honey has my bad eyesight and she needed new glasses and I needed contacts to keep others safe on the roads - from me), a trip to Barnes and Noble, and then a movie. We saw Just Go With It . LOVED IT! and I was so excited to actually laugh at practically all the previews. It's about time a bunch of good flicks were on there way out.

5. This is the year my first born, Ryan, will surpass me in height. I'm a good 5' 8" and he's right there by me - at 14 years old - and in a size 11 shoe. He walks past me and pats me on the head with that shit eating grin on his face (yes, the same one he passed on to his little brother). I told him though, beware, growing taller than me just means if you make me mad, I get the broom.

6. Bella has made a good adjustment into our family. We all love her to pieces, except two people - the man who didn't want a dog in the house to begin with (although even he says she's a good dog, which is HUGE) and the girl who cried all year long that all she wanted for Christmas was a dog. Ya. Go figure.

7. That same little girl mentioned in #6 above, asked for a HORSE today. Are you kidding me?!? You know, because they're so much less responsibility. Oh my. I feel for her future husband. lol

8. I am trying to make do with my biweekly grocery shopping items and cook with what I have in my pantry, fridge and freezer and NOT run to the grocery store every.single.time I need one ingredient. Because that ONE thing typically ends up being TEN things. Our monthly grocery bills have been outrageous because of impromptu trips like these. So tonight I needed a can of tomato soup, but instead pureed up some tomatoes with some tomato sauce and added in my own spices. The recipe actually came out better and I'm sure I saved myself $50 plus easily.

9. Many prayers are being said to St. Anthony again lately, who is the Catholic Patron Saint of lost things. My stomach is sick. We have not been able to find one of Aiden's beige CIs for nearly a week now. I KNOW it's in this house as it was discovered missing in the morning, and Aiden hadn't been out of the house the whole day before. One of those, Aiden's daddy thought I put it up and I thought he put it up, but come to find out in the morning, neither of us put it up. The only thing I can think of is it is clung onto some metal contraption. I'm getting nervous I may have to use my one time lost replacement card. Ugh.

10. and a little humor to end - while choosing which movie to see with Kailyn, I said to her, "You know honey. This movie is PG-13 (she's 10) and there may be things I'm not sure you should see or hear." Kailyn, "Like a bunch of swear words?" me (thinking more along the lines of what kind of sexual content a pg-13 could have) "Exactly honey, the swear words." Her, "Don't worry mom, I've heard them all from you. I'll be ok." Lovely. ; )

Parents Helping Parents

2011-02-17T13:00:00.003-06:00

Every one of us has our story. None of us will ever forget that dreaded day when we heard the words that our child had a hearing loss. No matter if it was profound, severe, moderate, or mild, I'm sure it all stung just the same. When I think back about that day, I still here the voice of the teacher on Charlie Brown, "Wah, wah, wah, profound, wah, wah, hearing loss, wah, wah, cochlear implants, wah, wah, wah."

"Um, excuse me?"

Then we were sent away with a list of organization's and their respective websites. None of which relieved my pain and hurt and worry and all those other crazy emotions welled up inside my twisted stomach.

It was the parent's voices, their stories, their videos of their deaf child listening to them, talking, and singing. It was the parent's of children with hearing loss who helped relieve all of the above plus some. and for each and every one of them, I am thankful.

So, if you are a parent of a child with hearing loss, and you'd like to help the parents who are new to this journey, please take five to ten minutes of your time and check this out:

AG Bell will be dedicating the May/June issue of Volta Voices to parents and families of newly identified children with hearing loss (0-3 years of age). The content will primarily focus on the information parents need to know immediately following diagnosis and during the child's early years of listening and spoken language development. To that end, AG Bell is asking parents of children with hearing loss to share their experience. If you'd like to participate in this brief 5-minute survey, go HERE. The deadline to complete the survey is Thursday, February 24.

PARENTS HELPING PARENTS - That's what it's all about.

Wednesday Workout - BEARS

2011-02-16T08:52:00.015-06:00

Every couple of weeks I choose a core area as our main focus at home. Whether it be a specific theme, prepositions, following two step directions, a specific letter sound or whatever the "focus" may be, we center it around listening and language for that time. I'm going to do my best to share some of our activities every Wednesday, but we'll see as time schedules tell. I'd love for you to comment on any activity ideas you have to add for all to see!

The past couple weeks, we've been working on BEARS.

It started at Aiden's speech therapy a few weeks ago when wonderful Ms. Cheryl read Copy Me, Copy Cub. She used a brown paper bag for the cave, pictures of bears printed from the internet for mama and baby bear, cotton balls for the snow (which Aiden glued on the "cave"), then they tore up brown construction paper together for the leaves to put inside the cave. Very cute idea and Aiden loved acting it out as she read it to him.

That same week, Aiden's AVT read him Goldilocks and the Three Bears. Aiden had never heard the story before, and with all the repetitions, I figured it a good book to work on three-four word phrases.

From there I extended it to bears in general - brown bears, black bears, polar bears, panda bears, and of course, teddy bears (and made a page for his experience book on the different kind of bears). Since we were talking so much about bears, I thought it was a perfect opportunity to also hone in on the /b/ sound since Aiden has trouble with it (he has trouble with a lot of his stops in speech production).

There are a lot of Goldilocks and the Three Bears books out at the library, each with their own twist. Some seemed too difficult and busy for a two year old, so I picked the easiest one that stuck to the story line as I know it. Dr. D had this boardbook by Bryon Barton, which was just short enough to keep Aiden's attention.

As I read the story, we act it out with different toys Aiden has to represent each scene. This story is also great in identifying the concept of size (big vs small, big, bigger, biggest, etc), adjectives (soft, hard, hot, cold etc.) and most fun of all, using different kinds of voices. To emphasize the story and concepts in yet another way, I made stick puppets and scenes from pictures I found on the internet.

We've also been reading other bear books such as these,

and one of my all time favorites which can be found here.

I'm also teaching Aiden the infamous teddy bear rhyme (I remember singing this as a kid jump roping):

Teddy bear, teddy bear turn around,

Teddy bear, teddy bear touch the ground,

Teddy bear, teddy bear read the news,

Teddy bear, teddy bear tie your shoes,

Teddy bear, teddy bear go upstairs,

Teddy bear, teddy bear say your prayers,

Teddy bear, teddy bear turn off the light,

Teddy bear, teddy bear say goodnight.

We each get a teddy bear and play together and I often find him singing parts of it as he plays with his teddy bears on his own.

Other songs I found we like:

Three Brown Bears (sing to Three Blind Mice)

Three brown bears, three brown bears,

See all their beds, see all their chairs,

The mommy cooked in a big brown pot,

The daddy's porridge was way too hot,

The baby bear cried a lot,

Three brown bears,

Three brown bears.

Hibernation Song (sing to Are You Sleeping) (and works on those "ing" verbs we've been practicing)

Are you eating, are you eating

little bear, little bear,

Eating nuts and berries,

For the long, hard winter

Little bear, little bear

Are you sleeping, are you sleeping

little bear, little bear

Sleeping through the winter

You are hibernating

little bear, little bear

Are you waking, are you waking

little bear, little bear

Now that it is Springtime

Sleeping time is over

Little bear, little bear.

A couple other things we've done:

print out color sheets of the letter B, b and of different bears from the Internet
play different songs/cartoons on You Tube to hear them in different voices
give Aiden the props and let him tell me the story OR give him any of the books we've been reading and let him tell it to me (which of course is all over, but GREAT way to try and expand those sentences!)

Vocabulary taught: bear, cub, cave, snowing, scratching, waking, biggest vs big, smallest vs. small, hard, soft, just right, porridge, forest

IEP Meeting Success

2011-02-14T19:58:00.006-06:00

We made it through Aiden's IEP meeting without any black eyes. Actually, there weren't any conflicts at all. He qualified for auditory training, speech and language therapy, and physical therapy. Our local school district was very cooperative and didn't bat an eye at any of the services we asked from them, the big one for them to send Aiden to an out of district oral preschool for kids with hearing loss (and will also offer him PT and audiology), including transportation to and from. No problem.

The only thing they really piped up on was in our favor and asked the school personnel at the preschool we chose for Aiden if they had any GT (gifted and talented) services because his cognitive functioning (IQ) was so high. Tell me I wasn't smiling that big ol' proud momma grin.

We didn't sign anything yet because we want to go over it again with our AVT and RIHP (Regional Infant Hearing Program) coordinator. The goals they set are very general at this point. I understand they need the time to evaluate Aiden using their curriculum tests, and after a couple months will have a much better feel for where he's at and how he's performing. I'm okay with this (for now), yet wonder if I should be?!? I mean, he's going to be in a preschool setting where the main focus of everything they do incorporates learning language and learning to listen. I think I am still going to push for some specific ones to be set that we've been working on at home though. The good thing is, is that he'll only be there half days (five days a week) for 2 1/2 months until summer break and then we'll call another IEP at the beginning of next school year to update his goals and objectives. At that point, they'll know Aiden and together, we can come up with more specific goals that can also include his growth over the summer.

We set a start date of March 14th, three days before his third birthday. At the end we walked down to meet his teacher. Aiden walked right in, took a look around (the kids were just getting up from nap), tore off his jacket and headed over to lay down like the other 5 or 6 kids were doing (very small classes!). He didn't want to leave. My heart melted.

A smooth IEP meeting PLUS watching Aiden walk right in like he's been there forever EQUALS tons of stress off mom's shoulders. Still having trouble letting go, but definitely less stressed! Now if I can only get through my daughter's process this easy.

More on the evaluation, transition, IEP process to come! Oh, and on the preschool we selected.