the orange m&m

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

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

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

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

(OH, 

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

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

love it. and so does Aiden.

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

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

Thankful

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

newest fascination - pockets

ten on tuesday

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!!

been busy

with my loves.

be back soon.

HaPpY HaLLoWeEn!

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

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

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

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

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

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:

1. Does not tear off CI when put on - actually wears it most of day showing he LOVES to hear.
2. When coil falls off, puts coil back on without assistance - showing he LOVES to hear.
3. 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.
4. ASKS for CI first thing in the morning or right after bath - showing he LOVES to hear.
5. 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 ; )
6. 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

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

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

 my loves. my life.

Ten on Tuesday

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

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

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

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

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)

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.