Ushers ... a New Journey

So it's been years since I've posted. Too many years. Aiden, my blue eyed baby above, was doing great, everything was right on track. Until the day. Until the day we noticed he was struggling seeing at night. Until the day that OT appointment after OT appointment didn't seem to make a difference. At this point he was in fourth grade, the same grade I taught, the same school I taught in. I watched him closely at recess and saw he wasn't keeping up. I'd been asking all my colleagues for the past three years how he's been. "He does his own thing." "He keeps up." is what I heard so I let it go. Yet in my momma heart, I knew there was something just not right. It took TWO Halloweens for me to realize he was not keeping up and had a difficulty with it. After the second Halloween, and a friend's Halloween birthday party, where my son chose to stay in the light, versus play tag in the dark, that I chose to pursue a neurologist appt. I made an appt with his primary care physician, who made us see his cochlear implant specialist first. From there we had to see a pediatric ophthalmologist. It was here my world came crashing down once again. I wasn't even prepared, nor did I ever think this possibility to be true. He mentioned the word Ushers and that we'd have to get further testing. He saw something I never thought possible for my boy. I knew the word, but at the time that wasn't our world. No way could that be our world. As far as I've always  been told, Aiden has EVA (Enlarged Vestibular Aqueducts) which took his hearing and effected his balance. Ushers?!?! NO!!!

Six months, a drive across the midwest to see one of the best doctors who deals with Ushers, confirmed, my baby has Ushers Syndrome. This is a rare syndrome that affects a very small amount of people out of 100k, and my boy has it. After 10 years of thinking one thing, my son has a true hard diagnosis that'd I'd never imagine.

Tomorrow, Aiden will start learning how to use a white cane. Being the parent I am, I don't know all the answers I probably should, but am just going with what I know to do best next. Yet, I am the parent who needs to know all the answers, yet am still trying to navigate through this new journey, yet still, not knowing if I'm ready for said answers. It still doesn't all make sense to me. I'm so used to being in the know about everything hearing loss, so it makes me feel dumb when it comes to not knowing how to deal with this new journey of my son going blind. It is not fair.

So what's next. I'm trying to find a personal trainer for Aiden. Ushers doesn't only take hearing and sight, it takes their balance. Aiden has Ushers 1B, which is a whole different post. There's so many different posts, but for now, I have to focus on my now almost 12 year old, and how tomorrow he starts his first lesson with the cane. I'm having a much harder time than he is. Again, I just don't get it.

Once again, my son will teach me much more than I could ever teach him. Y'all, this kid is amazeballs.

just had to post

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

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

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

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

{TEARS}.

This March will be his FIVE year hearing birthday.

Celebration indeed.

and what a perfect project to work on together.

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

Good Articles to Share with Educators

Just a couple hearing loss articles I came across that I thought would be beneficial to give to schools, teachers, day care providers, etc. to advocate for our kiddos.

I came across this one and then realized it is written by Leah over at Say What! I absolutely love her writing! So informative, so detailed, and I think this one is especially great for those people new in your child's life who need that basic understanding of what hearing loss looks like and sounds like.

http://leahlefler.hubpages.com/hub/The-Best-Hearing-Loss-Simulations-Understanding-Audiograms-and-the-Impact-of-the-Speech-Banana

This second one I stumbled upon from a hearing loss group I'm a part of on Facebook. I've never heard of this blog, but I'm going to search through it as I always love reading about hearing loss from a deaf adult's perspective to give me a better insight into Aiden's world. In this article, he writes about concentration fatigue. With Aiden starting full day kindergarten this fall, it's that something that's been weighing on my mind as I know he's just going to be whooped by the time he gets home. I thought this is a great article to share with educators as well.

http://limpingchicken.com/2013/06/28/ian-noon-concentration-fatigue/

Introducing the Nucleus 6

This is so exciting! It's not available in the US yet, but just the fact that Cochlear has had two upgrades in the short four years that Aiden's been hearing is just amazing to me! Now let's just hope that our insurance agrees!

http://www.cochlear.com/wps/wcm/connect/intl/home/discover/cochlear-implants/the-nucleus-6-system-/the-nucleus-6-system--

http://online.wsj.com/article/PR-CO-20130619-908918.html?mod=googlenews_wsj

Never too late ...

to start this blog back up (and catch up on everyone else's!), even if it's been over six months since my last post.

So I've vowed since it is summertime, to sit and have journaling time for my kids, and for me.

Time to get back into our journey.

and since the last time I posted (in November 2012), we have

• packed up and moved to Texas (it feels SOOOO wonderful to be back home)
• spent some good time in Wisconsin before heading south
• acclimated to new schools
• had IEP madness (so glad that's over!)
• said good-bye to an AMAZING AVT program in Ohio and reunited with our very first AMAZING AVT and audiologist back in Texas
• been catching up with friends GALORE!
• sang Happy 5th Birthday to Aiden
• signed Aiden up for KINDERGARTEN! (deep breath).
• had many swimming/bbq days with our friends
• went fishing, had bbqs, and more catching up with friends
• been submitting applications to reenter the classroom (I can't believe it's been FIVE years!)
• been hanging with our Ohio cousins who came for a week long visit
• been HAVING FUN.

Needless to say, I've been non.stop.busy.

But it's time to stop, and catch up.  I have so much to write about.

Aiden's journey continues. At his own pace, with his own special needs. We're still climbing that mountain, with obstacles along the way, but we're getting there. We're on the right track and I feel good about where we're at.

going {home}

We're packing it up

and

 heading home.

Well, not truly HOME-home, because neither my husband nor I grew up there,

BUT, Texas is where:

I moved to in 8th grade ... and stayed

 (my dad was military, so I was used to moving EVERY.three.YEARS).

Where I fell in love back in 1993 with my amazing husband,

had our first born,

and then our second,

and then eight years after our second decided, "Hey! let's have a third".

Where we owned our first and second home,

made many friends that became "our family",

started my first (and second, and third) careers.

Where my brother recently moved back to (even though he'll be FIVE hours away)

 and my other brother is moving to this Spring.

(Now we just need to pack up mom and get her there too.)

so yes, 

we are going HOME.

Back to the same city.

Back to the same schools.

Back to friends and "family" we've known for

all the years we've been married,
 celebrated many holidays with,
and who watched our kids grow up.

Back to an area we know and love.

Back to the CI team who diagnosed Aiden and his first

AH.MAZING auditory verbal therapist.

(you know, the one who doubled as my own personal counselor for the first 8 months of A's life)

Back to Kat and Thomas and Sid.

(all I can say is wine+a great friendship between us AND our kids+sunshine and patios and pools=pure bliss)

All my kids are excited.

especially aiden who truly has no clue,

yet tells me nearly everyday,

"Mom stop {insert whatever it is I'm doing}. We have to pack for Texas!"

oh and Ryan.

Beyond excited to go back to the friends he's known since he was SIX.

and Kailyn.

well, she's a little more apprehensive. She left in 2nd grade, now she's in 6th

(enough said).

she's been reconnecting with all her friends there through texts though; she's excited too.

We're all excited.

As another chapter comes to an end,

another book begins to open.

Life is a journey.

Enjoy the ride.

and the preschool teacher says ...

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

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

and here is a little snippet from Aiden's teacher at my recent parent-teacher conference.

(remember, Aiden is in a mainstream (nontypical) preschool class with 13 kids, all hearing with 8 typical peers)

"He reads the board out loud before I have a chance to,

he reminds me when I miss something in our daily circle time routine,

we have to ask him to give the other kids a chance to answer the questions,

and he's one of the most vocal in the class."--Mrs. M.

{simply.AMAZING}

From Freedoms to N5s

Aiden finally joined the bandwagon and got the (not so) new Cochlear Nucleus 5 system (external) last week (they actually came out within the same year that Aiden was implanted, so they're about three years new and who knows when the next upgrade will be out). We were at a CI clinic who would not submit for an upgrade to the latest and greatest unless the current external equipment was five years old OR it could be proven that the newest equipment allowed for better hearing (which we tried and it didn't work). I get this and we loved our audiologist there, so we decided to just wait it out since his Freedoms were doing just fine. Once I found out though, they wouldn't submit for repairs with his Freedoms either (which were out of warranty), I had no choice but to switch clinics. (Yes, I could have bought the extended warranty offered by Cochlear, but why do that when our insurance will cover repairs/replacements at a cheaper cost ... I just needed a clinic who would submit the claim if anything did happen).

Anyway, it was very hard to switch as we love us some Dr. Rachel. Long story short, she has always went above and beyond for us and it was there that we finally reached a point of stable maps. She was also the one who completely stepped up when I called her from JTC in a tizzy, and said, "I want to try this phonemic mapping approach." As soon as we returned to Ohio, we did just that. She.is.ABOVE AND BEYOND.AMAZING. We are so lucky to have had her as part of our journey, but we had to move on.

BUT, before making the final switch, I called our local CI clinic and asked them if they'd consider the phonemic mapping approach with Aiden, if they wouldn't, we'd stay put. So be it, we met another amazing audiologist who stepped right up to the plate, worked with Dr. Rachel, and Project Talk, to understand this new phenomena of "out of the booth mapping". Our new audi got her whole team on board, including the team's AVT who came in and worked with us AS A TEAM to make sure Aiden's maps were up to par and that he was in fact hearing all sounds of speech (prior to the booth, in the booth, then after the booth). SIMPLY.AMAZING.

and I think this is one of his best maps yet.

OH, and the reason for this post, they submitted for the latest Cochlear N5s.

Some differences:

• much smaller (see pics below)
• Splash proof - he can wear them through sprinklers, in the rain, playing in a pool or in the bath, but cannot fully submerge his head with them.
• older recipients have claimed being able to hear ending sounds crisper with them. Aiden's teacher reported that he seemed more in-tune and chatty since he rec'd them.
• the controller is on the processor - so now it's just the processor, the coil, and the rechargeable battery vs the processor, the controller, and the rechargeable battery;
• the coil and coil cord are separate vs both together; this is good because if one is bad, you just have to pay for that and not both together.
• the processor has a tiny blue dot indicating the left ear and a red one for the right; so helpful t for siblings, grandmas, and friends (and mom & dad) to know which CI goes on which ear.
• did I mention they're smaller??!!! LOVE

Funny story - when they busted out the big ol' briefcase of choices, all Aiden wanted was the PINK CAMO covers.

{SMILE}.

I'm all about encouraging him to play with dolls and play house and all types of toys (in fact, his favorite is his little people house, which I LOVE), but sorry dude, not getting the pink camo covers for your new CIs. His favorite color right now is pink, which is just fine (Ryan always wanted to be the pink power ranger when he was four), but pink camo covers, not happening.

Let's move on. Check out the differences:

front view with Freedoms (and his first ever school picture)

front view with new N5s! you can't see them!

Freedom (minus snug-fit) vs. N5s (which he doesn't wear the snug-fit with since the ear hook is much sturdier and holds on better - we do still use the critter clip though).

Look how much more slender the N5s are

Such a difference! We LOVE them!

and yet to come (once I can get time to edit it), what Aiden thinks of his new CIs.

and for those who haven't switched or recently switched PLEASE NOTE!
We found out the hard way that the 1 magnet on the N5s can be a bit stronger than the 1 magnet on the Freedom. When I was washing Aiden's hair the other day he kept saying "it hurts" so I checked out his magnet sites to find one side was near infection and scabbed over and the other was a little red. I immediately put some Neosporin on the sites and called his doctor and audiologist. I then called Cochlear and they sent me the 1/2 strength magnet (another difference - Freedoms didn't have 1/2 strength), which I received the very next day. He hasn't worn the left CI for two days now as we wait for that side to completely heal. His audiologist told me that she has seen both cases, where the N5 magnet was stronger and on some it seemed weaker. Lesson learned for mom to check the magnet sites much more frequently!

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.

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

his sentence,

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

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

Or,

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

wow.

the post in which he reads

Aiden was born with a profound hearing loss in both ears; he couldn't hear a jet airplane's engines if he was sitting right next to it. My husband and I immediately dove right into what our options were for raising a deaf child. After we were told about cochlear implants, we read study after study and attended conference after conference and we learned, our son's world didn't have to be a silent one nor one with limited literacy abilities.

We learned we could choose a world of listening, speaking, and literacy for our son.

We learned, that with the proper technology (cochlear implants in Aiden's case) and services (i.e. audiology and auditory verbal therapy), Aiden's auditory centers of his brain could still be accessed, stimulated, and developed into a strong foundation for listening and speaking, and therefore, reading.

We learned quantity matters. In order to stimulate and develop these auditory centers, it was imperative that he wear the proper technology everyday, all waking hours, AND that we talk, and sing,  and point out every.little.thing we hear, and narrate every.little.thing we did, then do it all over again; continuous input to feed his auditory brain. So we did and we still do.

We learned to read, read, read - TEN books a day - yes, TEN. And it's proven very effective.

We learned (first hand) quality matters. REALLY matters (see my past posts on phonemic mapping).

"Speech perception is the only thing that really matters. That's how they learn language, that's how they gain literacy."--Jane Madell

We learned all the above not only directly impacts Aiden's listening and spoken language, but also his phonemic and phonological awareness, and overall, his literacy skills.

We learned this journey is not easy, yet very rewarding. Aiden has been hearing with cochlear implants for three and a half  years now, but it hasn't been until the last year that I can honestly say he's had a strong and stable, QUALITY, map. He still has CI mappings every three months. He also has sensory processing challenges which have presented a barrier to his spoken language, an obstacle that we're starting to break down, through the guidance of our amazing OT.

and with all we learned above, a TON of hard work, an amazing team of professionals, dedication, patience, and consistency, ladies and gentleman, I am proud to present, three and a half years hearing, my deaf son, is actually reading. Everywhere we go, he reads signs (and most of his pronunciations are phonetically correct, sometimes  a little off), and is always asking, "What that say mom?" His interest in letters making words, and words making sentences, and sentences making a story, is soaring.

Take a look at simply amazing moment #678 and add it to my "I can't believe my deaf child is______" list. (and by no means is this a book we read every night. I have read this to him a handful of times, and it's been about six or more months since we last read it - promise).

First Day of Preschool 2

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

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

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

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

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

The only thing that didn't meet my checklist was that the two windows did not have curtains. 

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

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

"Hurry mom! Where's my bus?"

"Mom! I HEAR the bus! It's coming!"

Oh my gosh I'm so excited!

Such a big boy!

Dear Blog,

I promise I have not abandoned you. You have been on my mind so much this summer, but when the kids are out of school, I can't provide you the full attention you need. This summer has been extra hectic between (sometimes) up to five therapy appointments a week between two kids. But it hasn't been all work and no play, in fact, we've been having a TON of fun between all the appointments. 

It's been a summer of "firsts" (and some seconds & thirds), such as, 

Kailyn attending a sleepover camp for six days.

 Aiden feeding his first calf, and

 camping/swimming in the beautiful state of Wisconsin with grandma, (ok, definitely not a first, but it is the first time Aiden will remember it).

So much fun to catch up on, so many updates on all levels. 

So don't give up on me quite yet, there's much more to come.

In TEN days I will have a tenth grader, a sixth grader,

and a {talking quite a bit more, and so much crisper} preschooler.

Until then, I'm off to enjoy what's left of summer with my darlings!

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.

Two Great Articles on Hearing Aids

Even though it's a distant memory of having to put hearing aids on Aiden, I have been in contact with a lot of families recently who are just starting their journey and currently in a world of "FEEDBACK". Leah, a dear friend of mine whose sweet little Nolan has hearing loss and wears bilateral hearing aids, is an amazing advocate and knowledge bank on hearing loss (and many other avenues). She is also the author of SAY WHAT?.

Unfortunately, (and sadly) a lot of insurance companies do not cover hearing aids. This first article discusses different programs families can look into to help pay for them plus a lot of other great information. So even if your child already has hearing aids, still check it out.

http://leahlefler.hubpages.com/hub/Programs-to-Help-Families-Pay-for-a-Childs-Hearing-Aid

Her next article is a great video tutorial where Leah does an amazing job discussing different ways you can test your child's hearing aids to make sure they are working properly through the Ling 6 sound test. THIS is another great page talking about the Ling 6.

http://leahlefler.hubpages.com/video/How-to-Put-in-a-Childs-Hearing-Aid

Wow. Did that video bring me back. Otoease, feedback, checking the ling 6 with a hearing aid stethoscope. And for those of you who are on a hearing aid trial and know your child will most likely be getting cochlear implants, it is still so important to go through all this. One, you never know what your child is hearing, and two, even if your child doesn't hear the lings, it prepares you and your child for the daily listening checks and starts introducing them to the Ling 6. This is the same listening check we use every single day to make sure Aiden is hearing what he is supposed to through his cochlear implants. If he has trouble repeating one or more Lings back, it's a good indicator he may need a new map/program.

in which something breaks

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

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

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

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

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

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

he could HEAR us.

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

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

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

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

His daddy sent me this picture from the ambulance to let me now he was doing better. His daddy knows me pretty well and knew I needed this.

Can you believe he didn't fight this!?! He even tries to smile in this situation! Seriously the happiest boy I know.

By the time I got to the hospital, he was sitting up on his own, and back to himself. It really scared me how he wouldn't wake up and kept falling in and out of sleep at the urgent care center. So when I saw him sitting up on his dad's lap and he said, "Hi mom!" as I walked into the ER, I felt a bit more relieved.

at the ER.

Of course we went there without a t-shirt or shoes (we had to cut his shirt off him because he screamed so badly when we tried to take it off). AND, of course he had Jackson Pollock paint day at school that day, so he had paint in his ears, his hair, his feet, etc. All the medics kept saying things all worried, "Is his ear bleeding?" or, "There's blood here in his hair." or my favorite, "His feet, what's all over his feet?!"It was actually quite amusing. and of course this is how the story goes ... it's how we roll.

He got his first x-rays - which again, thanks to his CI, he was able to listen and do as the technician needed him to. I called one of my bffs, this CI mommy, as I was a nervous wreck on the way to the hospital. She calmed me and suggested I call Cochlear. I was VERY impressed at their quick response to get me in touch with a pediatric audiologist who reassured me that a x-ray and/or cat scan would be fine, but to just take off his CIs. They also suggested to get his maps checked soon, especially with the head trauma and his EVA.

first x-ray

my brave boy eating a lollipop as we wait for X-ray results

of course you get a chocolate shake anytime there is an ER visit

home resting. His sissy was so worried!
and check out those feet and nails from paint day! ew. but goes so well with the story.

and of course, the AV mom in me was snapping away, because just think of all the vocabulary we get to talk about now! Experience book in the making.

for the love of popsicles

aiden + popsicles = summer love.

for aiden, popsicles should be a major food group.

another great video

Excellent video recap of 10 year old girl's story of having her CI activated. I LOVE these stories for many reasons, but it's always so touching to hear what it's like from someone older since Aiden could not tell us what the whole experience was like going from silence to sound.

http://www.wfaa.com/news/Girls-video-diary-chronicles-her-struggle-to-hear-153311365.html

She heard herself breathing for the first time ... something that seems so simple ...

I challenge you to stop today. Stop and listen. Take in all the sounds around you that so many never get to hear. What are some of your favorite sounds?

{tele}therapy: a mom's perspective

In today's busy, hustle bustle, gotta be here, gotta be there world, what is better than a mom's night-out?

At-home therapy appointments.

see Aiden and me on the screen?

Outside of changing Aiden's school this past March, we also changed his therapy program. We are still going full force with auditory verbal therapy, but in a little different way. Instead of driving nearly two hours to see our former av therapist, we decided to try out TELE-THERAPY, also known as, TELE-PRACTICE.

I want to start by saying that we love our AVT from the past two years. He will always be a huge part in Aiden's journey. The two hour drive to see him though was draining and the much needed consistency started to falter. Our therapy time was slipping. When you're traveling that far, with two older "activity busy" kids at home, AND gas prices are insane (right along with the insane copay), , AND by the time you get there your sensory seeking child is bouncing off the walls from being in the car for 2 hours AND you can barely get him to sit for another hour, much less listen and talk {WHEW}, it's time to make a change. So we did.

As I sought out options in our immediate area, I found our choices in certified auditory verbal therapists were far and few in between. I needed something close, something convenient for my WHOLE family, something that didn't stress me out each time I thought about it, and someone who was a right fit for Aiden. I wasn't finding it. There was ONE in our immediate area, who was new to the local CI center, and who already had a waiting list. And btw, I live in the suburbs of a major city in Ohio, imagine people with deaf children in rural areas. (to see how many certified AVTs in your area, go
HERE).

Then I met Todd Houston, PhD, CCC-SLP, LSLS Cert. AVT, and Associate Professor of Speech-Language Pathology at the University of Akron. After speaking with him about some of my concerns with Aiden, he introduced me to

{auditory verbal} tele-practice,

and we haven't looked back.

What is it?  

Simply put, tele-therapy, or tele-practice, is therapy via a secure internet connection from the comfort of your own home, therapist on one end, you and your child on the other through an online classroom. No major equipment is needed, outside of your computer, a webcam, and a microphone. HERE is an excellent {professional} article all about it.

mom's perspective: You don't leave your house. There are no extra gas prices, no extra hassles of packing everything up for a trip to therapy trying to make sure your child has a good lunch in them before hand AND some time to get their wiggles out before their therapy. Then finish up only to rush home for your other child to get off the bus or to take yet another child to lacrosse practice or rush to whatever "it" is, as a mom's schedule is never NOT busy.

What does a session encompass?
A few days prior to Aiden's session, I receive a very detailed lesson plan, along with other attachments created by the therapist to use in our session (bingo board, coloring page, game of some sort, etc). The lesson plan contains the different goals we're working on and an activity or two for each. Each week, as the goal stays the same (until met of course) the activities to meet that goal change. According to the lesson plan, I print off all attachments and gather all necessary materials (toys, items throughout the house, etc) needed to complete an activity. The lesson plan also contains ideas of what to say or ideas of items to use etc.

Once the therapy session starts, it's like your typical auditory verbal session, except I am the main therapist (which is what I do everyday, except now I get professional guidance, as I "perform", on how to teach my child to reach those goals). We start our session talking about Aiden's week, concerns, questions, etc then dive into the activities. Having all planned out lessons in front of me, allows me to let Aiden feel part of it all by giving him a couple activities to choose from. We complete an activity, get feedback from our therapist, then I provide Aiden two more activities from which to choose. The whole time he is engaged ... okay, most of the time he is engaged. It is a bit easier for him to stray and start talking about the dog messing with the cats, or the dump truck driving by. I actually find this beneficial, as it's conversational speech, and provides our AVT a good idea of where Aiden's spontaneous expressive speech is at. Plus, AV is all about language, so if I can get a good language lesson in on something he shows interest in, even better.

mom's perspective: I now have a binder full of planned out activities (and corresponding materials) for all his different goals and there is no more guess work when there is a lull in "what to do" in our daily at home "play" time. Oh, and the confidence gained from "being the therapist" for 60 full minutes, with true professional feedback on the other end, is pure awesomeness.

What are the benefits?

• You are wearing the therapist shoes. It's not just watching, then modeling, then taking home to do. It is all doing, which I have found is key in carrying the goals on throughout the week. This way, our AVT can see me in action for the whole session, provide tips and guidance, and then I feel that much more comfortable carrying it out everyday at home.
• The plethora of materials and activities at your fingertips is heaven! 
• You get to see how all your child's toys, and many other objects throughout your house, are EXCELLENT therapy tools and different ways to include them in daily language.
• A consistent up-to-date list of goals (which I know every parent should have at all times , but in all honesty, this doesn't happen). I can state his goals now better than I have ever been able to in the past. To me, (a little bit of a control freak), this is huge.
• Better yet, you have multiple activity ideas to go with each goal (or did I say this already?). 
• With a laptop, you can travel throughout the house (or throughout the US!). We've played grocery store (with real food from the kitchen and Aiden pushing around his shopping cart - LOVE it) in the playroom, cooked muffins in the kitchen, sat on the floor in the living room at my mom's house in WISCONSIN. It's versatile. It's changing yet consistent. It's innovative.
• TIME - I can't stress enough how much time this has saved me (along with gas!). 
• Aiden is in his natural element. He's more comfortable. In traditional therapy, he would clam up and never completely showed his true character. At home, Aiden is Aiden. He acts silly, he laughs, he jokes, and best of all, he talks and participates much, much more. 
• Other family members can join in OR I can show a recorded session to my husband at a later time so he can feel more a part of Aiden's therapy too.

mom's perspective: If you haven't figured it out yet, I LOVE IT.  And when your child enjoys it and is asking, "Tomorrow we see Dr. Todd and Kelly and Anne?", you know he loves it too ... and that's what is most important.

What are the downsides?

• Your printer ink costs increase (really I've only replaced one ink cartridge in three months). Although still A LOT cheaper than gas prices and crazy hospital copays.
• If you are the type of person who needs that face to face, touchy-feely type interactions, this may not be for you.
• It can get a little stressful on days other family (ahem, LOUD teenager) members are home or when Aiden is having an off day. What happens is I try to manage everything going on around me AND the session itself AND worry about getting in what we need to. Bottom line though, this is life. My stance this summer is going to be - if I can see you and hear you, you're joining in.

mom's perspective: there are downsides to everything, and if they outweigh the benefits, it's probably not worth going on with. You have to look at pros and cons for you and your family. Every child is different.

Aiden has honestly started to SOAR. I know there are a lot of factors that go into his recent explosion (change of school, more one-on-one time with mom, excellent OT services), but I do believe that the consistency of our weekly tele-practice sessions, have had a HUGE impact on it all. Not only from the consistency of a weekly therapy, and the consistency of having the activities to use on a day to day basis, but even more importantly - TIME .

Time is precious. The time saved from traveling to and from, is now time spent playing, talking, singing, interacting; it's time spent together. To me, this is priceless.

If you are interested in learning more about tele-therapy, you can contact Dr. Todd Houston at houston@uakron.edu. If you'd like more of a mom's perspective, feel free to contact me off line at aidensmom0317@gmail.com.

a song. a story. a memory.

Just had to share this SIMPLY.AMAZING video. The perseverance, determination, and hope this sweet boy and his family have shine through and through.

The whole thing is weighing heavy on my heart .... how every hearing journey can be SO different, yet SO very much the same,

the WE WON'T GIVE UP states of mind ... the determination, the TEARS,

theYEARS of therapy ... the hope, the WANT ...

the ELATION as they reach each and every little (yet so big ) milestone that you work so hard to reach. how HARD all our sweet ones work.

Then there's the song.

The song is Fix You by Coldplay. This song reminds me so much from the past four years. I used to listen to this song, along with others from Cold Play,  over and over, as I would go on long walks, pregnant with Aiden, after spending afternoons with my father (who had severe dementia and was in a nursing home at the time). I'd walk and cry. I continued to listen to this song after I found out Aiden was deaf and all throughout this journey. I haven't heard it in quite awhile, so this song + this video = many tears. It reminded me of how much we've been through, how much we've overcome, and how far we still have to go. It also reminded me, we're not alone.

and what the parents of this video say in the end, is so true .... siblings, jobs, sports, school .... and a lot of therapy in between it all ... LIFE GOES ON.

 Be prepared. Grab a tissue. (and turn off the music on the right before playing).