and yet some more Out of the Booth mapping

There's not too many CI moms I know out there that would be happy to walk out of the sound booth with this audiogram (top line = left ear and bottom line = right ear):

now look at the speech banana and mentally place his audiogram in it (and remember, anything above the connected lines, he CANNOT hear).

not good. at all.

but, if you were a fly on the wall in the booth with us, you'd know why I am quickly learning to take his audiograms with a grain of salt. Bottom line,

Aiden does not perform well in the soundbooth. period.

How can I take this audiogram too serious when this same little boy can repeat each the six ling sounds with me (each ear alone) standing 10-12 feet behind him and speaking them at just above a whisper? According to this audiogram, he's far from hearing the /s/, and pretty darn close to barely hearing the /m/ or /sh/, yet he can imitate them and uses them all in speech pretty perfectly. Now, he has been dropping his /p/ and the endings of words (t, ed, s, k), and his audiogram does show this. But it's not a great representation of what he is truly hearing.

Aiden clams up in the booth. When he's not sure of himself, he does nothing. He's not one to sit still. He knows what he's supposed to do, but shows his power. He does great on the NUCHIPS (a speech perception test where he has to repeat back a spoken word) and even did sorta ok on the HINT (hearing in noise test where a sentence is presented in noise and listener has to repeat it back. He scored 49% on this, not good, but not bad for first time ever taking it). Listen and drop to pure tones? ya, whatever. He'll hold that block or marble or peg or whatever it is to his ear for.ever. Goldfish, he eats them. m & ms, chocolate melting all over. Stickers, sometimes, but just for a bit. Marbles, he's shaking the can (and when we move it, he reaches out to touch it just to hear it make the slightest noise, on purpose, then looks at us with that grin, again, showing his power). Tones mean no.thing to him and so it is very hard to get a true solid audiogram. 

And without a good solid audiogram, how the heck does an audiologist provide a good solid map?

based on phonemes.

Leaving the booth I was terrified at the thought of the changes they were going to do to his maps, but once we got to her office, I saw right away she was all ready to test him herself, by having him imitate back the different phonemic sounds which make up the words in our language.

and by doing this, she verified that he is actually hearing the /s/, /ah/, /sh/ and /g/ among a few others, and that he really is missing the /p/, /k/, /t/ and /f/ among a couple others. She'd then map him based on his imitated responses and test him again to confirm. 

(a little funny by my wee entertainer - as the audiologist was asking him to imitate a sound, she noticed aiden was watching and responding by which letter her finger was on instead of giving the sounds based on hearing. After a good laugh, she had to pick up her paper so he couldn't see which letter she was wanting him to imitate. She didn't realize mr. smarty pants knew all the sounds of the alphabet).

By the time she was done he imitated back a /th/ and /v/ sound! Now, he may not be able to perfectly voice these sounds in words (saying a sound in isolation is a little different than putting it together with other sounds to produce words), but the fact that he can near perfectly imitate them back, tells me something that his audiogram doesn't - HE IS HEARING ALL THESE SOUNDS! 

Here are a couple other posts about this out of the booth mapping experience.

• why we sought out a different way to mapping
• first recap of mapping out of the booth
• another CI mom's story of phonemic mapping

We have gone round and round with his maps since six months post activation. Some would blow it off that he just doesn't use his CIs as well as others, that he needs more time, that he's just a "late talker" a "boy" and that "he'll get there". Well, I don't have time to wait and see when it comes to my child's hearing and spoken language. I've learned, when a child isn't performing at a level they should be, first things first, CHECK TECHNOLOGY. and for this reason, we started this phonemic "out of the booth" mapping. We needed to know that Aiden had a good map before slapping another diagnosis on him. Yes, Aiden does have additional {small} challenges, but by golly, this has been heaven sent, and at least now we KNOW he has a good map to better tackle his other challenges; we KNOW he's hearing all the sounds in order to put them together and into words; we KNOW what he is hearing is what he should be hearing.

and if that's not enough for ya, based on the Goldman-Fristoe 2 Test of ARTICULATION, Aiden has made:

12 months progress with his speech sound production in a matter of five and a half months!

oh, and btw, we started phonemic mapping him six months ago. 

love

love

is watching my deaf son

dance

(with quite the rhythm)

to the latest Wii craze

Just Dance 3

and then later,

listening to him

hum or sing

parts of the songs he just danced to,

probably because he HEARS them

replaying in his cute little head.

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

love

is watching my deaf son 

write his name and the alphabet with chalk on the driveway and

speak 

each letter out loud as he writes it.

and then later,

seeing his face light up as he

hears

the kids from ACROSS THE STREET, come outside.

so he grabs his bike and chalk, 

and let's me know through

spoken language,

"MOM! Friends outside! Let's go!"

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

love

is watching my deaf son

try his hardest to get his fingers to work

in order to sign

 i.love.you

and then {moments} later,

running up to me,

in his pure silly aiden way,

to tell me with

spoken words

"I love you mom!"

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

love

is

cochlear implants

and the

amazing gift

 they provide my deaf son to

 listen and speak

each and every day.

New Beginnings

As we approach Aiden's third hearing birthday (and fourth birthday - WOW), I have to say that I never thought we'd be where we are today. I envisioned that all therapy would be behind us, except for check-ins here and there; that he'd be talking in full blown sentences, excited to tell me all about his day at school; that he'd be making up stories with details galore and talking so fast I have to tell him to slow down; that he'd be singing songs from front to finish as he danced around the living room. I envisioned he'd be at least caught up, if not beyond, his hearing peers, both receptively and expressively. To me, this wasn't a doubt. It's where we'd be.

But I was wrong. What I didn't envision is that he'd have social/pragmatic challenges; I didn't see us in weekly OT sessions for sensory processing and praxis challenges that not only effect many motor tasks, but things (that seem) as simple as multiple syllable words and sentence production; that we'd need a speech therapist on top of our AVT in order to close the gap on articulation challenges and to help him expressively speak, what he knows, more intelligibly. I never knew just how much work it is to talk and if all the "systems" aren't planning and working together, talking is one of the most difficult tasks even for a hearing child. I didn't envision awesome speech (and balance) on some days and pure mumble-jumble (speech and balance) on others.  I didn't envision hearing the words, "I'm just not sure what's going on. He's such a good listener, he gets it, he's a hard worker, and he's such a happy child, BUT SOMETHING'S MISSING." I certainly didn't envision that we'd possibly have another three years of therapy ahead of us. THREE MORE YEARS.

because I've been working my ass off. and it's SO frustrating.

What's crazy about all this though, is his hearing and listening skills are AMAZING! His technology is right on. He hears me as I yell for him from upstairs in the back bathroom and he's downstairs watching tv. He can repeat all his lings, each ear on it's own, from 10-12 feet away; he repeats all the phonemes pretty darn perfectly; he hears whispers, and well in noise. Receptively and cognitively - he's well ahead. He gets it.

I started writing this yesterday, as a "whoa-is-me-andmybaby" post. It's bittersweet hearing about other {amazing} kids implanted around the same time as {my also amazing} Aiden, speaking circles around him, graduated from therapy, and well caught up to their typical peers, all knowing we still have quite a road ahead. But, this is OUR JOURNEY; it is what it is, so we continue to move forward, and trust in our hearts he will get there (and he will).  Sometimes I feel I'm all over the board with Aiden. Like nothing's good enough for him. I promise you, it's not that. Yes, I am VERY particular when it comes to any of my kids and their education and success, but I believe every parent should be. But this is different. If it's not working or we're not seeing the support and fight needed to get him to where he needs to be, it's time to move on. We don't have time to "wait and see". Time is of essence at this stage and most importantly, I have to listen to my mommy gut. (and yes, I'm a bit of a control freak).

So we're making some changes.

and here's a glimpse at our new beginnings:

• changing his AV therapist - not because we don't love his therapist (we do), but logistically, on both sides, it wasn't working, and therefore lacked consistency. We will now have a WEEKLY session via the internet with a new AVT. There are so many positive and exciting things about this! More to come.
• changing his school - this sounds crazy, especially with his lack of language, but we're taking him out of his current oral deaf-ed program (which is 5 days a week all day) and placing him into a preschool which is 2 1/2 hours a day for four days a week. He will be the only deaf kid in his class. and it's a good thing. When I get him ready for the bus, he says, "NO mommy, new school!" He loves the new school and we've only visited twice. More to come.
• adding in a weekly (or possibly biweekly) speech therapy through our insurance - he had a wonderful speech therapist at his current school, but he was only allotted 15 minutes a day, 3-4x a week, and usually not one-on-one. I'm also working with his awesome SLP from his IFSP (before 3yo) days, to include her on his IEP to work with him one-on-one once a week, but also as a "push-in" in the classroom with him a couple days a week (in addition to a TOD). So far, the district is very open to requests and ready to work with us to meet Aiden's needs. More to come. 
• continue with our wonderful OT - there's so much I've learned from her about Aiden in the last eight months, and most importantly, Aiden is making HUGE strides. Six months ago, he couldn't stand on one balance bucket, now he can walk across six, WHILE TALKING! I tell her we get a free speech therapy session too when we see her. She's heaven sent and we still have quite the work ahead of us. 
• SOLID at home one-on-one sessions - with the change of school times, I will be able to dedicate myself to him alone. It was near impossible to work with Aiden at night. He didn't get home from school until 4pm, the same time R and K got home, then as I tried to help K with her homework, keep R on track doing his, getting dinner on the table, running to all their after school activities, bath, and bed, there was VERY little (if any) one on one time with Aiden, unless it was reading him his bedtime stories. Changing schools gives back our precious one on one therapy (aka playtime). and I think it's key to moving him forward.

We also have a neurology appt set up in May, just to see if there is something we're missing and hopefully get some answers. Maybe, just maybe, it will help us better understand his EVAS or if there's something else going on and possibly help in our plan going forward. I don't know, only hope.

Three years ago, there's no way I would've thought we'd still be here, with all these therapies, still trying to figure out why some days he speaks in clear 5-6 word sentences, but others we can barely understand a word he says. Why some days he jumps down the steps, but others he needs to hold my hand to get down. I can't waste my days worrying though, I have to keep my faith and know in my heart that he will be okay and that one day it will all come together - verbally, socially, physically. We will keep on keeping on. No regrets.

oh, and by the way, there's one other thing I envisioned almost four years ago - my child walking into a mainstream kindergarten, not feeling different, fitting in right along with all the kids -

and he will. 

whenever I doubted myself

and decisions to be made,

your grandpa  always told me

three.simple.words-

"FOLLOW YOUR HEART"

{exciting} changes are in the works.

more to come soon ...

don't forget ...

to water those rocks!

I came across this picture last night (taken last summer) and just had to share. I remember he was "helping" me water the flowers.

LOVE the INNOCENCE.

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!

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,

QUICK WITTED,

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,

GIRL.
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?
I.won't.stop.

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,
KEEPING ON.