Tuesday, January 24, 2012

Ten on Tuesday

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

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

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

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

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

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

7. I LOVE this picture of my silly boy.

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

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

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

Saturday, January 21, 2012

in which I talk about K ...

one of my biggest concerns has always been,
making sure my two oldest children are not 
left behind as I continuously advocate for aiden
and all of his needs.

even though aiden isn't quite caught up expressively with his hearing peers,
even though aiden is still having some pretty off balance days,
even though i am searching for a new school for him,
I have had to recently focus the majority of my energy on 
my two older loves.

and give myself frequent reminders that,
aiden's ok. his school is ok. his technology is on track.
his OT his pure amazingness.
we're starting a new AV program and
we continue to work hard with him at home.
the majority of my 
mom ENERGY though,
has had to be spent else where.
and as I'm not happy with all of aiden's current situation,
I've had to remind myself,
he's OKAY right now. I am not SUPERmom.
and as my mom frequently reminds me,
step by step, day by day.

I won't get into my challenges with my first born,
my lovely teenager, who's had his own struggles,
and has needed his mom, not partly, but full on,
and is learning to find "who he is" in a more positive way.
raising a teenager is.not easy.
but the sweet little boy i raised, is still there.
and to realize I haven't "lost" him, 
means the world. 
i SO love him, all the way
{to the moon ... and back}.

and now that I know he's okay,
it's time to excerpt the same energy to my girl. 
(whom this post is mainly about)

my FULL of LIFE,
with an AMAZING sense of humor,
and a  SMILE that lights up any room,
shy in public, but a LION at home.
HEART of gold,
 would befriend everyone and anyone, 
(just don't cross her).
has THE most contagious LAUGH,
SILLY beyond all get out,
 full of HEART,

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

and for the past couple years I've been fighting.
to understand how she learns,
and can be successful,
and to make sure everyone understands the same,
because she learns in such a different way;
she's artistic, hands-on, visual; 
has ADD,
a low working memory,
and they just don't get it.

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

and this is exactly how K thinks and what she goes through.
she hides it on the outside,
but confides in me, it's how she sometimes feels
on the inside.
and it breaks my heart ...
because she has such a heart of gold,
and such the personality.

last year, after fighting the district for over a year, we finally got her on an iep.
they couldn't understand why I would want her "labeled."
(this is what i'm dealing with).

I'm still learning about how she learns.
how her mind works.
so now i'm fighting to get her goals firmed up that
better meet HER NEEDS,
 not some generic goals that the district
can get by without truly doing a damn thing besides "checking for understanding". "preferential seating", and "signing her agenda book".

luckily last year, she had a teacher who modified and worked with K
to meet HER needs, and K was successful. she was positive about herself.
this year, not as much.

so back to square one - why does everything have to be such a fight?
why can't ALL teachers do what they're supposed to do
and realize not every student is "typical".
as a teacher, we constantly want our students to think "outside the box",
and sometimes, us teachers, need to think, "outside the box" too.

K is very much a VISUAL and TACTILE learner,
not to mention she needs frequent reminders and guidance of what to do,
what to bring home to study,
and small reminders of how AMAZING she is definitely wouldn't hurt.
she's smart. very smart. it's a matter of getting it out of her, in a little different way,
with a little extra patience, and a little extra time.

I met with the school psychologist yesterday, 
with my list of ideas for goals, to understand even better
just how my daughter learns and to figure out
how WE, as a team, can communicate to everyone on her team,
and TEACH them, how SHE learns best,
and how HER mind works.
my happy go lucky girl struggles.
and it's bringing down her self esteem,
and I refuse to let this happen.

you know what he told me?
"She's an average student who just needs to work harder than the others."
I took a deep breath. 

I then inquired about a computer program for kids
with low working memories, (that our insurance won't cover)
a program that would help her brain work to it's full potential AND improve her working memory.
and his reply?

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

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

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

and God works in mysterious ways.

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

(the same AMAZING board who provides funds to help aiden receive his wonderful OT
services that insurance won't pay for,
and other top notch services districts won't provide.
they want to HELP parents, HELP their child - imagine that).

a few weeks back, I took a long shot and sent in all of K's paperwork 
(ETR, IEP, past neuropsych evals, doctor's reports etc)
with the thought that maybe, just maybe they can help me help her, 
maybe they'll see what I've been trying to figure out on my own, 
but also thought, she'll never qualify. funds are tight.

but she did.

it was a bitterSWEET phone call.
because honestly, who truly wants to be in a position where their child DOES qualify,
yet when you're fighting tooth and nail for people to see what you see,
to help you understand what you can't quite put your thumb on,
and in turn they make you seem like some crazed woman,
because your child "is average and just needs to work harder", and
 then, BOOM. someone DOES see it?.?
I'm not crazy.

No, not crazy.
I'm a mom.
who knows her child,
and knows she needs a little more than your average joe.
because she's not average.
she's ABOVE average in all ways in my book.
and I'll never stop fighting for her,
I won't lower my expectations,
and will never quit fighting for her and what SHE NEEDS,
to be the AMAZING person she is.
in her own AMAZING way.

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

Friday, January 13, 2012

CI Brand Choice

A few weeks ago, a fellow CI momma blogger, who is pure amazingness, made this comment on FB about the picture below:
"...all three manufacturers ... three little boys ... makes my heart smile. Such a fuss is often made about which company is better. But this photo proves it's all the same, really. I just love it."
I took this during our trip to John Tracy Clinic this past summer. I love this shot because these boys created a great friendship while there and how completely awesome is it that everywhere you looked there were hearing aids and cochlear implants!?! There was no "different".

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

Melissa, (who is a phenomenal resource, well respected in the CI community, and mom to these two amazing girls both whom are bilaterally implanted), said it best,
"What's far more important than brand choice is what you do afterwards in terms of helping your son learn to make sense of the sound from his CI. That will determine your child's success, not brand choice. There are definitely differences in reliability, customer service, and all the factors that parents mention. However, they are minor differences, non of which will ultimately affect how well your son does, and where one has an edge another may have an edge in another factor. I remember our audiologist telling us that she had three one-year-old little boys all implanted at the same time, each with one of the three brands, and all were doing equally well. So if you're happy with your choice, then go with it and don't look back. Look forward instead."
I'm not at all downplaying how stressful it can be to choose a brand, believe me, I've been there (and sometimes, for different medical purposes, one brand may be a better fit than the others). When it came to choosing the CI company we would go with for Aiden, we leaned towards Cochlear from the get go. Today, I can't even pinpoint the exact reasons why. We did all the extensive research on all three brands, made a spreadsheet comparing and contrasting each, and what it came down to, was following our heart and going with what we felt most comfortable with. No regrets.

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

Advanced Bionics

Wednesday, January 11, 2012


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

My miracle though, has to do with hearing.

my deaf child. hearing.

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

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

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

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

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

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

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

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

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

my deaf child hears. he speaks.

yes, my miracle.

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

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

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

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

Saturday, January 7, 2012

in which Aiden becomes an actor

The other night Aiden's daddy was laying with him to get him to sleep, 
(yes, this is an eVeRy night thing. yes, I know, it's ridiculous. don't think we like it
whole separate post in itself
don't judge.)
anyway, after nearly an hour of Aiden tossing and turning and laying this way and that and flipping and flopping and kicking his dad in the face I'm sure more than once - you get the picture (and again, an every night thing), he sits up, looks at his daddy and says (of course no CIs since he's SUPPOSED to be sleeping at this point),

"Daddy, I need bucket!"

and proceeds to make these gawd awful, completely fake, gagging sounds like he's about to puke.
So dad rushes him into the bathroom and Aiden says,

"Shirt dirty, take it off!"

and again, proceeds to make the same, almost funny, gagging sounds like he's about to puke then looks up helplessly at his daddy and says,

"I sick. No school, stay home mommy."

to which he was brought downstairs to be by his mommy (and get his CIs on), grinning ear to ear because he knew the great performance he just gave.

and because I am a complete sucker, 
and because he's my baby AND only three years old, 
I let him stay home the next day.

does this look sick to you?

oh well.

we snuggled on the couch, played some Mario Kart, had lunch with daddy (where all the ladies love all over him and give him tons of chocolate AND he gets to sit and swirl around in daddies big office chair while watching Mickey Mouse on his computer) ... 

but it wasn't all full of fun and games. I actually made him choose a letter to practice for a mini speech session with mom. any letter we were working on, his choice. 

"I want p sound mom."

and he actually always has FUN with it ...

probably because of the yummy m&m treats.