Quick Catch Up

LONG.overdue.UPDATE. 

{in pictures}.
we've been busy.
very.very. busy.

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

he also got the new Cochlear N5s!

Check 'em out! You can't even see them from the front anymore!

pure {EXCITEMENT}
(more to come in a separate post)

someone else got a nice fresh hair cut.

because her school had a bout of lice, and unfortunately, so did she.

{EW}

what a trooper she was.

what a wreck her momma was.

my first born turned SIXTEEN.

wow. it can't be possible that I'm the mother of a 16 year old.

{SIGH}

He also got his first job. at Wendy's.

and no, he doesn't have his driver's license and this momma

is in no hurry for him to get it.

in due time, right along with good grades and that one word - responsibility.

{smile}

then there was also the first dentist appointment.

Do you know how AMAZING it felt to sit back and let Aiden

answer all the questions the hygienist asked?

{MIRACLE} 

of cochlear implants.

Ryan and Kailyn have really stepped it up with their little bro.

they read to him.
play with him.
have conversations with him.
argue with him.

teach him.
more so than ever before.

pure{LOVE}

...just because

my boy's gross motor skills and motor planning skills

have skyrocketed.

he's not stumbling near as much anymore, but instead

jumping and running and leaping and everything else in between.

pure{BOY}

he loves to {LEARN}

asking questions ALL.the.time.

enough said.

We lost our kitty Bonz.

 we had him eight years,

he was a part of our family.

it's been difficult for all of us,

(especially his brother Baby)

and he is dearly missed.

{RIP} sweet Bonezee.

the change (OT)

Last summer, we took a three week adventure to The John Tracy Clinic. Besides hearing phenomenal stories about it, we wanted to get an outsider's opinion on Aiden, as he just wasn't getting those thoughts into words, and words into sentences. Some of our team at the time said he was fine and he'll get there, some said they couldn't put a finger on what was going on but knew something was off, some mentioned apraxia. We had no clear answers and not a clue where to turn. So we turned to JTC.

last year, there's no way Aiden could've worn flip flops, much less dodge his sister's water gun aim; here, he's running in flip flops while yelling, "STOP IT KAILYN", and proceeds to jump over the hose to reclaim his water gun.

While in California, we learned SO MUCH, but the two biggest things I walked away knowing that changed Aiden's journey are:

1. PHONEMIC MAPPING - read more HERE, and HERE
2. PRAXIS/MOTOR PLANNING/SENSORY PROCESSING challenges that were affecting his spontaneous expressive language (among other things). I write about this HERE and pretty much sum it all up HERE.

Although his mappings weren't completely off, the phonemic mappings definitely helped us know he's hearing all sounds and we went from a good map to a great map - big difference. The identification of his praxis challenges made me call and get on a waiting list at a specialized OT clinic before even leaving California. 

Praxis? Motor planning? sensory processing disorder? I still get confused about them all, how they're related and how they're different. They can go hand in hand or not. Aiden has never been officially diagnosed with any certain medical term, but definitely has "tendencies" and challenges of them. So here's my best stab at explaining it (and I am in no way a professional OT, this is just from all my reading and notes taken at Aiden's OT):

What is praxis?

The ability to quickly and efficiently take in sensory information, process it, and respond. It includes, IDEATION (planning the idea in the mind); MOTOR PLANNING (making a plan for the action), and EXECUTION (doing the activity). Different praxis challenges can include apraxia/dyspraxia (both deal with difficulty in motor planning); ataxia (loss of coordination of the muscles); and more. Any of these can be mild to severe.

What is sensory processing disorder (spd)

Sensory processing (or integration) is how our nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. SPD is when these messages do not get organized into appropriate responses, which creates challenges in performing everyday tasks (including speaking and balance). Children with SPD often have difficulty with varying motor skills and other everyday skills which can lead to social isolation.

NOTE - there are SEVEN senses that can be affected - not just vision, auditory, taste, tactile, and olfactory, BUT also, the sense of movement (vestibular system) and the positional sense (proprioception). Aiden has definite disconnects in his vestibular and proprioceptive world, along with challenges having all his senses work as one as they should. And when any of these senses aren't "working together as a team", the child (and the world around him) seems out of sync.

A. Jean Ayres, Ph.D., said it best in her book, Sensory Integration and the Child, 

"Good sensory processing enables all the impulses to flow freely and reach their destination quickly. Sensory integrative dysfunction is sort of a 'traffic jam' in the brain. Some bits of sensory information get 'tied up in traffic' and certain parts of the brain do not get the sensory information they need to do their jobs." (Ayres, p. 51)

So how has all this affected Aiden and what has OT done to help?

First, it was clear our lil' dude's environment was out of sync - both in motor planning, execution, and sensory. For example:

• On off balance days his speech was greatly diminished.
• Some days Aiden would say clear 4-5 word sentences (mainly those that were repetitive to him like, "I want milk please"), others his speech was very jumbled unless speaking in one to two word sentences, and sometimes we couldn't understand him at all.
• Speech involves motor planning of many different muscles and breath control - Aiden had (and still has) difficulty coordinating these two to work together - especially with multi-syllabic words and sentences longer than 3-4 words. 
• Aiden was the kid who played alone, at a table doing puzzles or building with blocks (something stationary and away from the crowd), while all the other kids were running around dressing up, pushing trucks along the floor, etc. It was almost as if it was "too much" for him to handle - visually, gross motor, noise, proprioceptive, and balance wise ... I'd watch this from the two way mirror at JTC ... and it broke my heart.
• Aiden had difficulty performing two different sensory tasks, for example, walking across a set of six balance buckets while talking or following a simple direction, standing still on a simple piece of material to catch a ball, balancing himself while sitting on a peanut ball or moving swing while throwing a ball or picking something up.
• It takes a lot of input for things to register - his muscles need extra input to know where they're at, to know what to do to execute. Aiden does not talk if his actions are too sedentary, it's almost as if he needs to move - to run, to push/pull heavy things, to jump, to swing - to get all the wheels in his brain to work together to produce speech and much more. At his old school, he was having more off balance days than usual, he was not speaking that much, and I attribute this to the classroom way of more "sitting and doing", rather than "moving and doing".
• He wasn't crossing mid-line (reaching across the body with either arms or legs), which is a very important prerequisite for appropriate development of various motor and cognitive skills. He still doesn't have a hand preference, which is not uncommon though with kids with sensory issues.

I can't speak enough of how much Aiden has grown from this therapy. Nine months ago, I walked into our first OT session with Miss Amie. That same day I knew we found our miracle worker and ever since she has been magic. She works with Aiden and doesn't let him stop, doesn't let him fail. She works his sensory systems to train them to work together - heavy lifting or spinning to get his motors moving; obstacle courses that involve a combination of climbing, jumping, visual tracking, listening to directions, balancing, swinging, etc. ALL THE WHILE PROVIDING AUDITORY INPUT and demanding verbal responses from Aiden. She makes him speak and does not go on until she gets a clear answer while he's performing some other demanding task.

And here's what we have received:

• 9 MTHS AGO: Aiden was rarely crossing mid-line; TODAY: No problems 
• 9 MTHS AGO: 2-3 words per sentence, speech was slurred/choppy; TODAY: 5-7 (sometimes more) words per sentence, words definitely more crisp and understandable (although he still can have his off days).
• 9 MTHS AGO: Aiden couldn't stand on one balance bucket without holding onto someone's finger; TODAY: he can walk across six without falling off AND even stop, keep his balance, bend over to pick up a toy on the floor (after listening to a verbal direction), stand back up, and keep on going!
• 9 MTHS AGO: Aiden did not like moving objects - such as the swing at the park; TODAY: He not only loves to swing, but he is balancing himself on a moving object, while visually tracking Amie's hand, to grab "whatever it is" she is holding, then throwing it into a basket in a completely different location. THIS.IS.HUGE.
• 9 MTHS AGO: Aiden could barely walk up the curb without holding onto my hand and he definitely wouldn't walk down our two front steps alone. TODAY: Aiden is jumping two feet from the top step over the bottom step and landing without falling.
• 9 MTHS AGO: When Aiden tried to jump, his feet really didn't leave the ground. TODAY: He HOPS and GALLOPS and JUMPS in nearly every step he takes.
• 9 MTHS AGO: Aiden rarely initiated peer play, rarely talked to peers, and my heart broke that he may be the loner child; TODAY: Aiden is the one approaching kids at the park and yelling, "HEY BOY! C'MON LET'S PLAY!"

I even see a difference in his pain tolerance. While he still has a high one, I definitely see that pain registers quicker than it used to. Aiden is still uneasy on bumpy surfaces and can still have off balance days. He has EVA and I believe that his off-balance days are going to be something he'll learn to compensate for.

We still have a ways to go, and not sure when the end to OT will be, but with our "amazing Miss Amie", along with our other recent changes (school and therapy), we've found our Yellow Brick Road!

and that alone right there, gives me tears.

looking back {can be a good thing}

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


Bittersweet. 


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


truly - simply.amazing.


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

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

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


then a glimpse of today: 

• {drama} "Mommy, mommy, mommy (insert fake cry), mommy, mommy the remote! (insert more fake crying) Where the remote mommy? Mommy help me. Mommy, mommy ..."
• {tattling} "Mom, mom, mom, MOM! Kailyn not give it me! KAILYN give it me! You have share Kailyn!"
• {hearing} "You hear that mommy? What's that mommy? I hear sound. What's that sound?" (and I have to listen extra hard to hear what he's hearing and think it's oh.so.cute how he still points to his ear like I taught him to do way before he was even a year old)
• {loves to hear} "Mom, mom! My CI! My CI falling off my ear! Help me mom." 
• {love.} "Yay! Daddy's home work!" (as he hears the front door open)
• {hide-n-seek} "I found you! You count now mom, I hide." 
• {LoVe} "I love you mommy! Gimme hug and kiss!"
• {tripleLOVE} "C'mon mommy, snuggle, snuggle." (as I try to get him into his bed)

and it's these simply.amazing.EVERYDAY.moments like these that I realize, I am strong enough now and I WAS strong enough then. This is by far a fly by night journey. Day by day, step by step has become our journey's motto ... and we still have a lot of work ahead of us. But because of this amazing technology, TONS of hard work, dedication, STRENGTH (through multiple avenues - mainly, CI/hoh parent support community), and unlimited HOPE, my profoundly deaf child is listening and speaking.

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


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

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

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

-------------------------

Welcome to Holland

by Emily Perl Kingsley

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

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

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

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

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

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

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

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

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

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

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

Two Years Hearing

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?"

My Sidekick

How do you go from this,

to this,

to this

in what seems like overnight.

In the blink of an eye, my binky baby has turned into a little boy,

and it makes my eyes water.

This week Aiden had therapy with our Regional Infant Hearing Program advisor, who happens to office out of the elementary school that houses the hearing impaired program for preschool and kindergarten. This program is also an option for us to try and send Aiden to, as long as our school district agrees. Instead of therapy though, his therapist and I talked while Aiden played.

Aiden turns three on St. Patty's Day. What does that mean besides the fact that my BABY is growing up WAY too fast?

It means that he will no longer receive Early Intervention services through our county (which pays for his PT, OT, one of his speech therapies, and provides extra funds for community classes such as the music therapy class he's taking at the time).

It means we have scheduled a multi-factored evaluation (MFE), in order to determine if Aiden is eligible for public school special needs preschool (in which we have multiple options of preschools the district MAY agree to send him to that we've been visiting).

It means transitioning from an IFSP (Individualized FAMILY Service Plan) to an IEP (Individualized EDUCATION Plan).

It means Aiden will be under someone else's wing learning language and socialization skills, making friends, having fun, and carrying his "bapac" (backpack) and "uhnba" (lunchbox),

and as excited as I am to think about the benefits he'll receive at whichever preschool setting we choose, and all the fun he's going to have at "sool", and how much language he'll learn, and how much he'll grow all around ...

it all also means I'm just not ready to let my baby go.

It means every time I think about it, my eyes water.

It means that I need to put on my big girl panties and know it's time to let go and let him come out from under momma's wing and gain the independence he is OH SO ready for.

I had no problem sending my older two. None. Nada. Nilch. I don't even think I got tears (not until I saw my oldest walk out the door to middle school).

but now, every time I think about it, I get teary eyed.

So I talked to my therapist, I mean my sister-in-law, and she brought up some very good points.

As many know, barely two months before Aiden was born my dad died from a long, yet fairly quick bout of dementia. He was 55 and way too young. I knew something was wrong with him and worried about him as we tried to figure things out going from doctor to doctor for a good four plus years, took him into my home (on and off) the last two years, and then ran from assisted living to hospitals to nursing homes the last four months. It wasn't easy. At all. I fought (and worked) with doctors, nursing homes, nurses, insurance agencies, and psychologists. I took care of him the best I could. He was my sidekick.

Then two months later Aiden was born. I remember telling my dad the summer I found out I was pregnant. He did a happy dance around the living room. Four months later, he'd make mention of "the baby" but didn't really get it. Three months later, he was gone. I knew Aiden was going to be my strength to carry on. What I didn't know was all I had ahead of me and how much advocating for my dad made me a stronger person and better able to deal with the advocating which was yet to come.

and that's exactly what I've been doing for nearly the last three years. Making sure my deaf son receives the best medical/hearing teams possible to provide him the chance to hear and a life of listening and spoken language; running from audiology appointments all over the state every two to four weeks for nearly a year until his maps are finally right; getting second opinions when that mom instinct kicks in and knows something still isn't right even though "the professionals" say everything is fine; running to therapy after therapy appointment; talking, talking, talking about every.little.thing in order to provide a language rich environment and making EVERYTHING (yes, everything) we do an "experience" to soak his brain with nouns, adjectives, verbs, prepositions, etc. to TEACH him (over and over and over again) something that would seem so simple and that any typical hearing child learns through incidental listening.

For nearly the past three years, it's been him and I,

He's become my sidekick.

Learning, growing, experiencing,

EVERYTHING

TOGETHER.

and honestly, I'm scared. The one person who filled my dad's void is growing up. It's not that he doesn't need me anymore, but more the fact that someone else will be teaching him besides me. I didn't have this problem when he went to The River School in DC, but that was more like the ultimate mommy's day out two times a week. I know I could wait and keep him home another year, but again, I know preschool is the best option for him and believe me, as ready as I seem not to be, I am willing myself to be, because I know how much he'll benefit and how much fun he'll have.

But deep down inside, my stomach knots up and I get a lump in my throat with the thought about not having my sidekick, day in and day out, who means the world to me to take care of and play with and teach and love on all day long.

But I'm sure, deep down inside, there's a part of me who will learn to enjoy

the time away from each other and the tears won't last long.

and maybe, just maybe, I'll be able to fill that void,

and take this long overdue time alone to find myself

and rediscover who I am, as my own person,

without a sidekick.

Ready or Not?

Aiden's ready. I'm not.

Last year at this time, we drove a good hour plus two times a week for Aiden to attend the program at The River School in Washington D.C. It was well worth the drive, as the program there is PHENOMENAL, but I truly don't think Aiden was completely ready for it all. He was the youngest in the class (by a few months), he still wasn't walking, he wanted nothing to do with circle time, he'd cry almost every time I dropped him off, and would cling to me the rest of the afternoon after I picked him up. Yet, even with all this, he grew a lot, and I learned a lot, in the short three months he was there.

When we moved to Ohio, I decided to not enroll him in any type of preschool program, but to enjoy my every moment with him (most likely being my last child) and prepare him better for his preschool days. Plus, we moved into a county with an amazing early intervention program and were able to take advantage of many extras such as music therapy, Little Gym, multiple focus play groups, and a weekly toddler play group all funded by the program and still get in structured playtime with other kids his age.

I'm glad we made this decision. I LOVE my days with him and he's really come a LONG way. Today, he doesn't shed a tear when I drop him off for play group, he's talking SO much more, and receptively he understands so much more. He's done a complete 360 when it comes to keeping his attention to the task at hand and to structure all around. He's growing up. He's ready.

and not only is he ready socially, but very much cognitively as well.

WARNING - Mommy Brag Moment: he counts to 15, recognizes and names the numerals 0 to 10, knows all his shapes and identifies what shape an object is (i.e. his Lego table is a "sware"), knows all his colors, says the abcs, and can recognize and say around 7-10 letters, is completing simple patterns, etc.

My little explorer is ready to go, no matter how much his mommy is not ready to let him go.

I am so proud of him.

(note: turn off music to the right. and I apologize, but I am having trouble captioning right now, but will try again soon.)

this video was taken over a month ago.

and although I think I'm not ready to send him off, that I'll miss him terribly, that he's still too young, that he's my last child and I need to hold on to every.single.minute with him ... I'm sure it won't be TOO terribly hard to find the fun and joy of some mommy alone time.

hmmmmm.

When can he start?

TWO Milestones Today!

Every Friday we attend a class, Muscles and Messes, that is put on through a private Occupational Therapist paid for through the county as an Early Intervention service. The ten week class is for kids who have sensory integration challenges and is run by an OT who specializes in SI and a speech therapist. Each session focuses on a different sensory input. The parents are provided information on the specific input along with ways to help the kids overcome different challenges. During the hour session, the kids run and play and swirl and twirl and crash and swing and slide and push weighted down shopping carts and smear paint or shaving cream all over the windows and ride the zip line and play in the ball pit and crash some more. It's an hour of nonstop fun,

and by the time we walk out of there, Aiden has had his sensory fill and will actually SIT in a shopping cart. The class is PHENOMENAL!

At the end of each class, we sing the "clean up" song then head to circle time to sing our good-bye song, to which each kid is prompted to say their own name.

Milestone #1 - After the clean up song, Aiden actually went and SAT DOWN on his own, and was the first one there and prompted the other kids to "sit own". He typically needs to be guided each step and repetitively told but through his own listening, he knew the song was over and the next step he needed to take! Even more shocking, he actually sat through the whole good-bye song. I'm usually the only mom sitting in the circle without a kid since he's the one who is still up and running trying to get in every ounce of play he can.

Milestone #2 - During the good-bye song, AIDEN prompted everyone else to say their name. I had to look to make sure I had the right child, because in any type of therapy/class setting, Aiden does.not.talk. At each child's turn, he would point to them and say, "name?" and then try and get them to say, "Aiden." He wanted everyone to be Aiden. Of course, when it was his turn to say his name, he said nothing, but by golly, everyone else was "Aiden".

These are huge for us. H-U-G-E, HUGE! I hate that we only have four classes left and that this OT has a waiting list a mile long, because as comfortable as Aiden is there and as awesome as this OT is with sensory related challenges, he could make some huge strides.

Hello Language Explosion

Back in August, Aiden's expressive and receptive language were evaluated using the SKI-HI Language Development Scale by our Regional Infant Hearing Program (RIHP) and the REEL-3 by his Auditory Verbal Therapist (AVT).

The SKI-HI is a language assessment that was specifically designed for children ages birth to five who are deaf or hard of hearing.

The REEL-3 (Receptive-Expressive Emergent Language Test) is a language assessment that is given to help identify infants and toddlers who may have language impairments or other disabilities that can affect language development.

Both test results are obtained through parent interview.

When we first moved to Ohio, we did the SKI-HI, but not the REEL-3.

February 2010 - Chronological Age=23 months; Hearing Age=11 months

• Receptive Language: 20-22 months
• Expressive Language - 16-18 months

August 2010 - Chronological Age = 29 months; Hearing Age = 17 months

• Receptive via SKI-HI: 32-36 months; via REEL-3: 35 months
• Expressive via SKI-HI: 22-24 months; via REEL-3: 24 months

So, within six months time, my little monkey not only increased his receptive language skills by 12 months, he has receptively surpassed his chronological age.

Expressively, he gained six months of language, in six months, and is still about five months below his chronological age, but still above his hearing age. In my eyes though, this is ABSOLUTELY AMAZING ... you know, being the fact this is a boy who was born PROFOUNDLY DEAF. and I only have the highest expectations that not only will he catch up to his CA, he will go way beyond. It's only a matter of time because ...

... the boy is talking. Check out what he's saying at the right (yes, I finally updated it) - and this is just what he says spontaneously and in the correct context. I did not include the many words he imitates.

He has an expressive vocabulary of over 200 words. Over 100 of these words have been added in the last THREE and A HALF months (July to present)! Leaving the first 100 to the first 16 months. Hmmm, doesn't make much sense does it?

Ummm... can you say major mapping issues? and finally identified motor planning problems from his sensory integration. I believe too, that all his gains in his gross motor skills the past six months have allowed for this recent language explosion.

I am SO PROUD of my little man and all he has accomplished. He has come such a long ways in the past six months alone and I can't wait to see what the next six months brings!

Smorgasbord of Updates

Not posting in awhile PLUS tons of unfinished posts sitting out in Never, Never Land EQUALS stress in my OCD mind. To clear my head and stop the massive pile up of posts screaming to be finished, I decided to sum it all up in one, which is probably best since I'll be to the point and not ramble on like I often can.

1) Vacation! - Let's start with the important things first. ; ) Aiden's daddy and I just got back from a much needed get-away to Vegas with my husband's sister and her husband. It was our first trip without kids AND without going to see family in over 10 years! Our 16 year anniversary is coming up (smile) and they just celebrated their 10 year (smile). Aiden's awesome grandma drove in from Wisconsin to stay with the kids while we flew off to Sin City. I didn't realize how worn out I was until my body took over my fun and went into complete relax mode. I did more laying in the sun and sleeping than anything else. My mom did a FABULOUS job in keeping up with Aiden's CIs, participating in his therapies, and by the time she left, he even had some new vocabulary added to his growing list. We all had an amazing time, came back more relaxed and are now ready for the beach!

2) New Audiologist - We decided to switch Aiden's audiology center from Cincinnati Children's to Cleveland Clinic strictly for convenience. We loved the audiologist we had in Cinci, but traveling two hours west one week then two hours north another was wearing. Our newest audiologist was trained and highly recommended from our old one, works hand in hand with Aiden's AVT, Dr. Don, AND is training to be an AV under him as well. So not only is she Aiden's new audiologist, she participates in his Saturday AV therapies as well. She is absolutely wonderful with Aiden and he responds very well to her.

3) Mapping Madness - A few weeks ago we had a third audiology appointment within six weeks. We're still trying to get Aiden's maps back on track and with the looks of his latest audiogram, we're well on the way. I was shocked Dr. Rachel got results across the board like this because the boy wouldn't sit still and really wanted nothing to do with the testing. So I'm sure they're even better than what the audiogram below shows, which would put him hearing between 20 and 25db across the board! We go back in a couple weeks for AV therapy and another audiology appt. to confirm these results and make any necessary mapping adjustments.

4. Speech Therapy - Back in early summer I debated adding on more of a traditional speech therapy for Aiden and decided to go ahead and try it for six to eight weeks. Well, we are going to continue with Ms. Cheryl as we absolutely see a difference in Aiden's overall tone and breath control. She has been amazing at providing us ideas on how to work with Aiden's sensory issues and low muscle tone which are affecting his motor planning skills and therefore his speech production. We know Aiden gets it receptively. He's well above age level in his receptive language. It's expressive where he lacks. He is starting to speak in a lot of two/three word sentences, it's just that you can't understand a lot of them (unless it is something that has become very repetitive for him, such as "get down" or "all done" or "it's stuck"). If he were to say each of the two or three words separately, you'd understand each one pretty well. But when he goes to put two or more words together, they come out all jumbled. We brought up the concern of apraxia, but she doesn't see it in Aiden. She is also helping us with specific speech sounds (right now we're working on /p/). Since we've been seeing her, Aiden is now producing a perfect "ee" and can hold a sound for a much longer duration AND at different pitches; something he couldn't do before.

5. Auditory Verbal Therapy - We continue to see Dr. Don two times a month. We drive to Cleveland once a month so Aiden's daddy or siblings can participate in a Saturday session, and then to the college where Dr. Don teaches once a month which is closer to home. This man is amazing and Aiden responds very well to him. We're blessed to have him on our team. Right now we're working on 1) identifying "ing" verbs and using them in simple sentences such as, "The boy is riding.", 2) sorting higher level groups such as types of animals (farm vs. water vs. zoo/jungle) and fruits vs. vegetables and 3) discriminating between similar sounding words, such as house and mouth, 4) story telling through Aiden's daily experience book (which I'll detail in a separate post).

5. PT and OT - Six months ago my son couldn't walk on or off a one inch floor mat without falling. He would have to completely stop, throw his arms out for balance, then carefully walk up or down. One inch. Many days he walked around like a drunken sailor. He could barely run and definitely couldn't jump. There's not a better time to see improvements in gross motor than summertime. Parks, play dates outside, riding bikes, climbing, running up and down hills, camping, swimming, etc. This summer we saw TREMENDOUS gains in Aiden's gross motor. He is now RUNNING, jumping (well more like trotting, but sometimes he'll get both feet off the ground), and best of all - he's PEDALING his tricycle! He still has some off balance days, but he's learning to compensate for them and is finally keeping up physically with his peers.

With his gross motor gains and ideas from his wonderful PT to continue to work on at home, we're going to stop PT for awhile and pick up OT, but this time with a therapist who specializes solely with sensory integration. Sensory is such a beast to understand and can affect so much, including speech production. I don't feel like I have a good handle on it and need a lot better guidance on how I can help Aiden conquer his sensory needs in order to move forward with his expressive language and speech production ... oh and learning how to calm his major hyperness/daredevil ways wouldn't hurt either.

6. Transition Time - I CANNOT BELIEVE we're at the point of leaving county services and beginning to look at PRESCHOOLS! To me, this means Aiden is almost THREE and growing up way too fast! I'm in the process of touring local preschools (more to come on this) and at the end of this month we'll have our transition planning conference with our local school district. It is a very brief meeting which we'll introduce ourselves and let them know which preschools we'll be touring as well as where we would like Aiden's evaluation done to determine eligibility of services.

7. and the best for last - Aiden. Aiden is taking off. His vocabulary is growing daily (I know. I SO need to update that vocab. list to the right), he is reaching the goals set for him, and you can just see his little brain constantly in discovery mode. He knows his colors, his shapes, his numbers (not just rote counting, but identifies them written up to 10) and is starting to recognize certain letters. He's having little conversations with us. He tells his brother, sister, and the cats what to do, he tells everything bye-bye (except his therapists, because why on earth would he talk to them?), and is starting to express his wants and needs so much more than he ever has. He has finally learned to EXPRESS the word NO ... and as he says it, he signs it just as fast! Dr. Don says he's on the verge of a 2-3 word sentences language explosion, "Deafness, shmeffness", he says, "he hears and speaks better than many hearing kids I know."

I love this journey.

Sudden Explosion ...

like, out of nowhere?

Okay. I'm admitting it, I have a little OWD - "Obsessive Worry Disorder" when it comes to Aiden. Yes, I worry A LOT about his progress - not only in speech, but with his gross motor skills and being able to sit still. I'm his mom. I can't help it.

If you haven't noticed, I have not updated his list of "words" in QUITE.SOME.TIME. Like, since November. Ya, been a bit busy. Honestly though, I haven't been writing them down because a lot of times his words are here one day gone the next; plus a lot of them are more imitations than actually using them spontaneously in context. So being the OWD type of person I am, I decided to make a list of ALL words, but identifying which were spontaneously used in context and which were mere imitation.

With my new goal, I have been stalking my son with a notebook and pen the past few days and I gotta say, the boy is talking. Talking SO much more than this busy mom gives him credit for. I'm not going to wait anymore for that perfect sounding "dog" before I count it as a word. By golly, if I know he's saying dog and he's actually saying it as he points to a dog, the boy gets credit in my book.

It's funny how quiet he is in therapy or even when I'm working with him one on one at home. I asked our Regional Infant Hearing Advisor if she'd do therapy in our car ... because once we leave there, he's nonstop. So I decided to see what he had in his own territory, on his own time, without him knowing someone was "watching him".

and some examples ... (btw, do you know how hard it is to try and to write HOW your toddler says a word? It's not like you can stop and ask them, "can you please repeat that?" Not easy.)

Monday 6/28

We followed each other, doing our own things, but I made it a point to jot down everything I heard (and understood) that he said in context:

• ha (hot) - as he put his hand on the dryer as I was folding clothes
• da ih (got it) - as he picked up a puzzle piece off the floor
• bah (ball) - playing ball
• on - as he went around turning ALL the lights on as he does ALL the time
• dye-dye (bye-bye) - as he waved to me to go get into trouble in the bathroom
• ahey, et, O (ready, set, go) - as he pushed his car across the floor
• ow!
• hi! - his all time new (yet old) favorite

Less than 10 minutes worth. If that. I was floored.

Highlights from stalking him the past two days:

Tuesday 6/29

• Told his dad to "et own" (get down) as he tried to pull him out of a chair
• Would say something close to "o urn" (your turn) as he played Wii with his sister
• "ance" (dance) as he brought me the Laurie Berkner DVD to watch
• "boo" (book) to read him a book
• "awsh" and "upsais" as we heading upstairs to take a bath.

and get this (we've been practicing and introducing all the sports the past couple of weeks as this summer's main theme):

• "astabah" (basketball)
• "oobah" (football)
• "asbah" (baseball)
• "oot" (shoot)

Wednesday 6/30

I'm not big with flashcards, but Aiden loves them. Every once in awhile I'll bust them out to get him to practice his pointing at the correct object and get him to imitate the sound/object name.

Out of 20 cards, he spontaneously said 12 of them PLUS added in a the animal sounds or signs. The one that surprised me most was DOG. I've been trying to get him to SAY dog FOR.EV.ER. He's always done a raspberry sound for some reason. Today he flat out said "DAH"! I nearly fell off my chair.

Those were the cards. Today, my little out of nowhere chatterbox,

• asked for a piece of "she" (cheese)
• FINALLY made a WONDERFUL /ee/ noise (without all the nasal nastiness) when prompted by an M&M (my new bribery tool)
• "ah don, et own" (all done, get down) after dinner - does that count as a FOUR WORD SENTENCE?!?
• and the BEST PART OF THE DAY ... while I cooked dinner he was playing with the dishwasher buttons. As he pushed each button, he'd COUNT! "UN, OO, (something random for three), O, I, SIs" He counted to SIX! We count all the time, but I've never heard him count without imitating me before! WOW.

I think I'm going to take the rest of the week off. The boy's a genius! (I can say that ... I'm his mom!)

LADIES AND GENTLEMEN,

Check out the ROUNDING of these lips!

After many, mANY, MANY months

of working toward this sound ...

.... WE FINALLY HAVE THE

LONG O AND OO!

(make sure to turn the music off on the left first)

Now, this video doesn't capture the /oo/ as well as he truly says it,

as he's not much of an on-the-spot performer and

says it quite well when the camera is not

close by. You may notice too, his first /oo/

sounds like /m/ which we always watch closely,

as these two sounds can be easily confused

and could show a mapping issue if Aiden were

to consistently confuse them.

Some words we've added to his vocabulary list,

or have made clearer with his new sounds are:

uh-OH

(instead of uh-um)

WHOA

(as in whenever he trips or falls, and with QUITE the emphasis I might add)

shjoo

(for juice)

mo-mo!

(no-no as he yells at the cats)

Elmo

(instead of just "elm")

mo

(instead of ma for more)

Now if we could get that dang /ee/ out of him.

TWO YEARS OLD!

This past Wednesday was Aiden's second birthday. I can't believe he is already two years old! In honor of his birthday we had a family get together at his aunt's house to sing "Happy Birthday", eat lots of yummy food, and smack around a pinata. Since our little leprechaun is a St. Patty's Day baby, his daddy's family is all Irish, and St. Patrick's Day fell in the middle of the workweek, we decided to combine it with honoring St. Patrick too! I'm sure Aiden's birthdays will always be quite the festivity.

I love how baby k's mom posts updates at milestone dates, so decided to start doing the same with Aiden ... especially since I'm not good at getting the baby books filled in!

At two years old Aiden:

*is a hefty little guy weighing in at 30 pounds

*wears size 5 diapers, but is well on his way to size 6 (which mommy's procrastinating because there are a lot fewer in a size 6 vs. a size 5)

*wears a size 2T shirt and pants

*loves Elmo and dancing to Laurie Berkner

*loves playing Wii with his sister and wrestling around with his brother

*favors his daddy over his mommy, unless dad isn't around, then mom rocks the world

*loves cereal, deli turkey meat, yogurt, bananas, and honey buns

*cannot have anything of value in fear that he will throw it in the toilet, trash, or down the laundry shoot

*still loves LIGHTS and FANS which all have to be "on" all.the.time.

*still climbs onto EVERY.LITTLE.THING he can

*is starting to initiate imagination play by himself, with all the great sounds included, such as cooking in his play kitchen, zooming vehicles around the kitchen floor, playing at his train table, and even playing "listening check" with his rings and Lego's

*has become quite the "organizer" and likes to sing the clean up song ("mmm up, mmm up") as he puts things away (sometimes without being asked!)

*loves bathtime and will even take our hand and lead us upstairs, saying "mmm on" (come on) when he wants to take one

*loves to "help" mommy sweep, feed the cats, fold the laundry, and empty the dishwasher.

*has to get a goodnight kiss on his head from everyone and has his own special "I love you"

*loves to throw everything out of his crib, all the diapers out of the stacker (attached to his crib which I really need to move), then proceed to take off his pants and diaper and pee in his crib in protest to naptime which I refuse to give up yet.

*is showing signs he's ready to be potty trained (see above), but for some reason, mom is just not mentally ready *deep breath*

At two years old, Aiden LOVES to hear and shows us this by:

*replacing the coil all by himself when it falls off

*pointing to his ear as soon as he wakes up in the morning or from naptime and says "on"

*stopping to listen and pointing to sounds and expressing emotion toward it.

*taking off and handing me both his CIs himself when getting a shirt put on, at bathtime, and at bedtime (but only after he's laying down and we're done with prayers and I love yous), only to ask for them back as soon as he's through

*repeating almost all the Lings during a listening check - oo and ee still aren't quite there although the sound he does make for them is quite consistent.

*receptively understanding SO much, including countless nouns, many verbs, and many, many commands.

*imitating so much more and really starting to come along expressively.

HAPPY 2ND BIRTHDAY SWEET BOY!

We are so proud of you!

Happy First Hearing Birthday Sweet Boy

(turn the music off on the left before hitting play)

Loving Me Some Laurie Berkner

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

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

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

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

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

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

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

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

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



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

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

Realizations

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

LOVE TO LISTEN.