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.