Thursday, May 17, 2012

{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.

Sunday, May 6, 2012

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).

Thursday, April 26, 2012

{FOUR}

just wanted to share something
I put together for Aiden
now that he's been FOUR
for a whole month now!

It's amazing how once they turn FOUR,
they immediately become BIG.
It was like over night that
he GREW UP.

where did the time go?

I can tell him to do things, 
like, "Go get your pajamas on."
and he does (well sometimes).

He's saying BIG {100%} BOY things like,
"ewwww! My foot farted!!"
then laughs his head off.

OR how about this:

as he comes running into the house,
laughing hysterically,
"MOM! I pull my pants and girls see my unnerwear on,
and girls say, heeheehahahaheehee, and I run!"
insert{FOUR year old grabbing stomach and belly (fake) laughing}
(and yes, he calls his underwear, "unnerwear on" just like he
always calls the toilet, "potty first")

oh and I can't get away without noting,
it was soon after he turned FOUR,
that Aiden first advocated for himself on the playground,
as a little boy stopped in his tracks and asked me,
"What are those things on his ears?"
and Aiden very proudly looked that boy in the eyes, smiled and said,
"Those my CIs!"
AND my four year old is now APPROACHING kids 
on the playground all by himself and saying things like,
"C'mon boys, lets go play!"

ok, this is HUGE. 
seriously. HUGE.
tears&smiles.
you go FOUR year old!

I asked him the other day if he was my baby,
and he said, very matter of fact,
"No mom, I'm daddy's boy."
and then wouldn't even come give me a hug.
{sigh}


Yes, he is100PERCENT little boy.

and I love every little
ounce of his oh so adorable,
silly beyond words,
BIG FOUR year old self.

and the one thing he can't take from me,
is that he will ALWAYS
be my baby.


Friday, April 20, 2012

when it all starts to come together.

As I wrote a couple months ago, NEW BEGINNINGS have been in the works and all I can say is WOW. I knew in my heart a lot of these changes were what we needed to move forward. No regrets.

My son is taking off.

For example:

HIS SPEECH and LANGUAGE
  • 2 MONTHS AGO: "Help you mommy!" TODAY: "Mom I need help! I can't reach my chocolate milk! Mommy help me please!
  • 2 MONTHS AGO: "Kailyn soccer. Aiden park." TODAY: "Kailyn go play soccer and mommy and Aiden go play at park. I like the park mommy. Oh thank you!" 
  • 2 MONTHS AGO: "I want bed mommy." (meaning he doesn't want to go to bed). TODAY: "After bath, time for bed? I don't want go bed, I stay up you and daddy." 
  • 2 MONTHS AGO: "What's next?" TODAY: "After school, library and get books, then what's next?" 
  • 2 MONTHS AGO: "Aiden Lucky Charms please?" TODAY: "I hungry mommy. I have Lucky Charms no milk."
  • 2 MONTHS AGO: "Ow Kailyn!" TODAY: "Kailyn don't hurt my head! That hurts! owww!"
  • 2 MONTHS AGO: "Aiden three year old." TODAY: "I four years old next year I five and then six. I not three no more."
  • He's using phrases like - "Oh, it's so beautiful!" and "Wow! That's amazing!" and "I am so excited mom!" and "I said to hang on." (really? I must say this.)
  • He's picking up on language through incidental learning left and right. He's expanding his answers to questions to include words within the question.
  • When I didn't understand that he wanted me to turn the radio OFF in the car (I thought he was saying up) he overstressed the oFF saying it perfectly (he really has a hard time with this letter) and when I asked, "Why?" he answered, "BECAUSE it's too loud!"
I kid you not. His language has SKY.ROCKETED. We still have a lot of work ahead of us, but I knew it was in that cute little head of his just waiting to explode!

HIS OT
I really need to write a post about Aiden's OT. She is uber-amazing. When I think about her, I smile. When Aiden sees her, his face lights up. She has a gift. I'm going to dedicate a post all to her, but wanted to give an update here.
  • Six months ago, Aiden could barely walk across 2 balance buckets, this week, he made it across all SIX (or seven?)!!!
  • He's running without falling (ok, most of the time).
  • He's processing multiple tasks in an a lot more seamless manner than he's done before (still a little ways to go, but the boy has made HUGE strides!)
A lot of his progress in OT transfers over to his speech. Again, need to dedicate a post about this. We're still scheduled for neurology in May, as he still has off balance days (or hours). I asked Miss A if she thought we could "graduate" soon, and she thinks we still have a bit to go. That's okay, because we'd miss her in our weekly schedule!

HIS DAY to DAY SCHEDULE
  • He is sleeping in his OWN BED and going to sleep in his OWN BED at 7:30 and falls asleep on HIS OWN! This is huge. TWO MONTHS AGO: I would have to lay with him every night as he tossed and turned and didn't fall asleep until well after 9 by which time I was also out.  Then he'd be up throughout the night, 3-4 times or more. I was getting no down time at night and neither of us were getting any sleep.
  • He has always been a happy go lucky kid, but I'm telling you, the kid has an extra pep in his step these days (literally, because he's learned to gallop (another HUGE milestone for him) and he does it everywhere we go).
  • He is eating better. I know kids go through stages, but it seemed like his appetite came back the same time all these changes happened. 
  • Him and I get the whole afternoon together - to be silly, play hide-n-seek or go-fish or legos (or work on those pesky /f/ words), or dance, or go to the park, or even just sit back and watch a movie together. It's amazing having this time back with him. I LOVE our alone time together. Seriously, PRICELESS.
He's coming out of his shell and showing us what he has. It's all coming together. I attribute a lot of this to being around HEARING peers (good language models), an amazing new teacher, his wonderful OT, and a new weekly AV tele-therapy program with the amazing Dr. Todd Houston and his grad students through the University of Akron (more to come on this too) ... 

OH, and he's FOUR ... and everything seems to change at FOUR. {SMILE}.

Monday, April 9, 2012

Hearing Loss in the Classroom - Video

Wanted to share this video someone shared on CICircle. It was the first thing I looked at this morning and it really caught my attention.


The message behind this video is loud and clear. Our hard of hearing/deaf  children work VERY hard at listening - especially in the classroom where there is always background noise (chairs moving, papers, tapping of pencils/feet/fingers, hallway noise, outside noise, computers humming, talking, whispering, etc - believe me, a classroom is rarely completely quiet) and not always the.best acoustically appropriate environment - and they can easily miss information, not only from the teacher, but even more importantly, from the students around them. I have read over and over again that 90% of knowledge acquired by a young child is through incidental learning and I experienced this firsthand in my own classrooms.  As Aiden's mom, I must ensure that our school district and all his teachers etc. not only understand the importance of the appropriate use of any assistive listening device, but also (and just as important), identify clues that Aiden is hearing (or not hearing) ALL spoken information, especially that of the other students.

With Aiden in mainstream preschool now, I am forwarding this over to our district's Director of Special Education, Aiden's teacher, and all his therapists.  Although we are not using an FM at the time (there is a soundfield amplification system in his classroom as our audiologist recommends that a child with CIs not use a personal FM until they have the language to report back problems with how the FM sounds - static, not working right etc), we will be in the near future, as I want to make sure Aiden has every tool available to him in order to make listening in the classroom as easy as possible. PLUS, our district is so new to hearing loss and this will be beneficial in many ways and for  the other students with hearing loss.

Here are some other sites/articles I am going to share on hearing loss in the classroom as well.

If you have any links to videos/articles you presented to your school district while advocating for your child, please share in the comments section.

Thursday, April 5, 2012

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.

Sunday, April 1, 2012

ABC and a little G

Since the last time I posted,
we have celebrated:

ANOTHER YEAR OF HEARING!
THREE YEARS
to be exact. 
REMEMBER THIS SWEET FACE?

soon after his second CI activation

We celebrated three years hearing with a trip to the park,

and some requested, "chocolate ice cream with sprinkles please".

love this face!

Then a week later was Aiden's,
BIRTHDAY PARTY!
the FOURTH one!
 we celebrated with a HUGE birthday/St. Patty's Day party combo.
It was an open house, and in the end, I believe
we counted 24 kids (from ages 1 to 16),
who were there to join in on the festivities.

Aiden saw his first St. Patrick's Day parade,
took some good whacks at his second ever pinata,
and ran around with many cousins and new friends.

FOUR YEARS OLD!


love these sweet babies!


AaaaaannnnnDDD ...
I got to meet this

and her adorable children!

(I have a lot better pics besides this one from my phone, but cannot get my camera to download them! ugh)

She and I have "known" each other since soon after our boys were implanted.
We talk on the phone together,
and support each other through this amazing journey,
but this is the first time we met in person,
and it was pure awesomeness.

Peas and Cam are even more adorable in person! 
They gave me a hug as soon as we walked in
and were so excited to play with Aiden!
 It was great watching all three boys running around and
talking amongst each other about what to play next.
It was like they'd known each other for years ...
just like me and their mom.
I LOVED hearing Noah's amazing language and how it just flowed,
no different than any typical five year old.

The highlight of the day,
listening to two deaf children play hide-n-seek,
with a hearing peer,
each of them yelling out as they counted aloud,
from one to ten,
 then running up to let us moms know they couldn't find another,
and then all settle down to watch some Toy Story 3.
(well, the highlight besides sitting and talking nonstop to 
a pretty amazing mom whom I absolutely adore).


and last but certainly not least,

GRANDMA!

I packed up Aiden and Kailyn last week for their spring break and headed to Wisconsin.
Aiden has always been shy around my mom,
but this trip,
he discovered the MAGIC of GRANDMA!
It was pure bliss
as I watched them laugh,
and dance,
and TALK.
Aiden wouldn't leave her side.

LOVE.