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. 

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. 

Another Hurdle?

Okay, so I got up extra early the other morning, before the troops, and started to summarize the last two weeks at JTC, but never finished. I was trying to say too much at once.

Now I'm back. and while I want (and will) summarize this completely amazing trip as much as possible, I have to write from the heart. Because that's how I write best. Before I give out all these amazing tips and lessons learned, before I write about all the extremely phenomenal life long friendships I've made, before I tell you ALL I've learned, I have to get out what's on my heart.

It was a very hard week for me. I'm going to be very upfront. I know I shouldn't compare my kid. I know I shouldn't me sad for my child when I look at how amazing another child is doing - but guess what? I have. I do. and of course I am SOOOO happy to see these children excelling and speaking. OF COURSE I am!

but in my mommy heart, I also know there's something else going on, and before this trip, had no clue where to turn. my heart hurt and my tears flowed. Because now, I'm getting a clue.

We came to John Tracy hoping for yet another opinion on why Aiden's spoken language seems to be delayed. They (meaning the statistics) say (something like this - not exact numbers, but close), "when your child has a receptive vocabulary of x amount of words, they will start saying their first words. When that receptive vocabulary grows to x amount, they will start putting two and three words together. etc. etc." (I have the statistics at home, so I can't quote them directly). Aiden's receptive vocabulary is HUGE! His expressive vocabulary is HUGE - as long as he is saying the words in isolation or within a two to three word sentence. He is GREAT at repeating and imitating a model, but when he tries to spontaneously put words together, it is a jumbled mess. I've been told, "he's a boy". I've been told, "it's just taking him a bit longer". I've been told, "he says PERFECT blends (i.e. SNake, and TRain, etc) and it will come when it comes". I've been told "he can say a four/five word sentences", yet he's been modeling that specific sentence for months, and it's probably one of a few.

I'm watching kids here, who were implanted a whole year after Aiden, who are answering "W type" questions. I'm watching kids here talk into the microphone each morning and say a pretty damn good, "Good morning friends." When Aiden says it, you can barely understand it because it's all jumbled together ... more like, "goo-orng". seriously. Aiden is a great imitator. He has a HUGE receptive and expressive vocabulary list. Aiden is SO ON cognitively, but again, something's missing.

Last week we had our one hour speech therapy here at JTC (with a cert. AVT). We played "Guess what's in the bag" and showed him the three categories of items. He knows farm animals, food, and clothes categories ... he knows them. Yet, when something was described to him, he could not vocalize what he needed to.

Something is missing. After one particular morning of listening to Aiden speak in class, I met with his SLT, holding back tears. I had just witnessed a situation of Aiden putting multiple words (like 3 to 4) together, spontaneously with a classmate and didn't understand him. Simple words he knew. She asked me what my heart felt, and I told her, I felt something else was going on. She suggested getting him tested for Apraxia. She thought we should get other avenues tested and gave me the tools to find a good center in our area.

BUT ...

It just so happens that at the same time as we're here, that an AG Bell conference was happening in DC and one of Aiden's first AV therapists attended a class about CI kids who are not performing as well as expected. She knew our story. The class talked about these kids being misdiagnosed with Apraxia when in fact, it had to do with their maps. And she found me a local CA resource to provide another opinion.

So, here are our next steps:

• We're calling this audiologist in the San Diego area, who specializes in similar situations to get a second (or truly third) opinion on Aiden's program ... because without the right program, a child will not move forward.
• We're checking out, with the help of Aiden's SLT here at JTC, where we can get him tested for Apraxia or similar disorders in our area.

What does our future possibly look like?

• All depends on the above two factors. The audiologist at JTC believes he has a good map. They say it could be better, but it's good. If we find out that his map is good from yet another third opinion, we have another evaluation on our hands.
• If he tests to have apraxia, we have yet another therapy on our hands. and a therapy that is almost like starting from day one. BUT we will move forward. I will not stop.

I can truly say I'm spent. Of course I will do ANYTHING to get my child the help he needs. I will do ANYTHING to get him there. I'm not ready for this, yet I believe I've known, and have been preparing myself for the next step no matter what it may be. So I have to be there. No matter what the outcome may be. I have to be ready. yet, it tears me up inside.

So my questions to you:

• Do you have a child with CIs and Apraxia (or something similar)?
• What is the therapy like?
• Do you have a child who gets it receptively and cognitively, and somewhat expressively, but couldn't put the words together because of a bad map and finally figured out what the problem was?

I have to find answers. For me, but even more so, for my boy. I will not give up.

Decision Made

Not long ago I wrote this post looking for guidance and thoughts on putting Aiden into an additional speech therapy. First, let me say THANK YOU to all who responded! I love this amazing community we are all a part of and the open advice/guidance we provide one another!

Soon before I wrote that post I had no qualms about it, in fact, we were very excited this highly recommended therapist finally had an opening for Aiden. Being the OW (obsessive worrier) type of person I am when it comes to my kids, I decided I didn't do my homework well enough (due to completely forgetting about the first appointment until 15 minutes before it, which led to me NOT being prepared mentally or physically) to make a final decision, and hence, my fret all about it.

After a weekend of wondering and hearing back from all of you, I decided I needed to speak with Miss Cheryl again, so I called her, this time much more prepared.

I was very upfront and honest explaining I was nervous about mixing philosophies, about confusing Aiden, about her plan for him, about having "too much" therapy, and how I truly didn't know her background except for what I'd heard from others. We spoke for nearly an hour.

She had a very impressive background, attending Galludet and George Washington Univ. She's worked with kids with hearing loss, but Aiden would be her first bilateral CI kiddo. We spoke of how far technology has come. She told me she'd like to get in contact with Aiden's AV therapist and take some auditory verbal classes for her continuing education classes this fall.

She told me she'd been thinking of Aiden since we left ... how amazed she was with his excellent vocal quality and thresholds; how his speech production is very close to his chronological age, yet right on for his hearing age; how she shouldn't use much sign at all with him since HE'S A DEAF CHILD LEARNING TO LISTEN AND SPEAK and how it would be easier for him to sign than to speak, so she will refrain from using sign unless she sees it as a means to an end (which we do too). Overall, she'd like to approach him as a child with a mild expressive speech delay due to low muscle tone (which affects his breathing and therefore expressive speech ... this is why Aiden will sometimes make that annoying high pitched "gasping for air" sound when trying to speak) and minor oral motor issues (and of course, him being deaf).

We will continue full force on our AV path. We have a WONDERFUL AV therapist who teaches us ways to continuously incorporate language opportunities into everything we do. In the same sense, I believe Miss Cheryl will complement this program well working on other areas such as Aiden's breathing patterns, duration and pitch, and as time tells, articulation.

In the end, we agreed that a trial period of eight weeks would be a good amount of time to see if we are a fit for each other and reevaluate where we want to go from there. I feel good going forward and hope this does work out ... especially since she's our only therapist less than 30 minutes away!

Searching for Some Guidance

As parents of deaf and hoh kiddos know, appointments can be very overwhelming and feel as if there is no end in sight. In the beginning it felt like we had an appointment nearly everyday for months on out. They settled down as time went on and then WHAM - we were slapped back into reality as we went to nonstop activation and mapping appointments, not to mention the therapies in between. Then the storm calmed and appointments became fewer again.

I feel we're back in the storm again.

Aiden's list of therapies/appointments to date include:

• Physical Therapy - After a recent evaluation, Aiden is still significantly below average in stationary/balance skills and locomotion skills. He has low muscle tone (which I would never guess trying to pry him off something or take something away from him - the boy is strong!) We have a PT come to our home every other week.
• Auditory Verbal Therapy - Every other week we drive 2 hours to see Dr. Don. I know crazy, but we LOVE this therapist and we get to visit family all at the same time.
• Regional Infant Hearing Program therapist - once a month and LOVE her too. We do a lot of learning to listen activities that go hand in hand with our AVT. This is at the same school that houses the oral preschool program for the deaf/hoh that Aiden will most likely attend.
• Music Therapy - We just changed this from weekly to every other week, she comes to our house, and it's a TON of FUN.
• Occupational Therapy for sensory issues/vestibular/balance. We just left one practice due to lack of "warm and fuzzies" for this therapist. When you don't feel like you're learning anything to help your child and dread going to therapy, it's time to move on.
• Audiology appointments - We have these once every two to three months ... we're still trying to get Aiden's maps back on track. We're getting there, but I'm still seeing issues with his responses to the low frequencies in his right ear - we're heading back to Cinci in a few days.
• Little Gym - YAY! We love Little Gym! It's a FUN class to help with balance and low muscle tone, but even more importantly, to be around other kids his age and have some fun!

Then of course, we have the most important therapy, and that's our everyday language rich experiences that have become part of our everyday normal.

(These are the reasons I stay home. If I got paid for all the different "hats" I wear, I'd be making much more than I ever did in the working world.)

To top it all off, we are considering putting him into a more "traditional" speech therapy (in addition to his auditory verbal therapy). This would offset the weeks Aiden doesn't have AVT. She works with our county and comes highly recommended as working with a wide array of special needs children and helping them learn to speak. She also specializes in working with kids who have low muscle tone and sensory issues. Although our team believes Aiden is doing well and is a very bright two year old, there is a consensus that his low muscle tone and sensory seeking ways may be affecting his speech production. (after taking into consideration the fact that he's deaf of course).

We had an evaluation with this therapist, Miss Cheryl, last Friday. She is married to a deaf man who was implanted years ago, but never quite adapted to it, so no longer uses it. She has a child with vestibular and sensory issues similar to Aiden's. She likes to use sign as a bridge to spoken language. We informed her we are not against sign, but use it VERY little. We like her. We like even more her office is only FIVE minutes from our house. I worry about having yet another speech therapy, but more so, one that is to a different beat than what we're used to in AVT.

We are also questioning finding another OT who specializes in sensory integration (SI). We did have Aiden reevaluated through our hearing program's OT (we never completely understood Aiden's OT issues until this point). The results showed Aiden's grasping and visual motor skills on target, yet there are vestibular issues (due to his EVAS) which he is most likely compensating for relying on vision. The sensory profile results suggested that there are issues with auditory processing (of course) and oral processing (hyporesponsive meaning it takes more input than normal to register). Aiden is a sensory seeker and low registration child (meaning again, Aiden requires a significant amount of input in order to produce an appropriate response). These children are very active and are continually engaged within their environment. Aiden gets overstimulated in an environment with a significant amount of visual input, since it is this system that he relies on to overcompensate for his vestibular issues. The OT recommended 1) at home activities to focus on enhancing his other sensory systems (besides vision) to learn to compensate for vestibular deficits, 2) continue PT, and 3) seek a speech therapist regarding oral motor processing due to sensory results.

So what to do. This would add in two more appointments into our already busy schedule. We DON'T want to overindulge Aiden in therapies. We DON'T want his toddler days to be sitting in a therapy chair or playing in a therapy room. We DON'T want to look back and remember him being more in therapy than playing with friends. Yet in the same breath ...

We DO want our baby to learn to compensate for the dizziness/balance problems he may have for the rest of his life.

We DO want our baby to run and keep up with his friends, something that today, is very hard for him.

We DO want our baby to hear and to speak in a way that you'd never know he had a hearing loss.

We DO want our baby to be mainstreamed by kindergarten.

We DO want to build a strong foundation for Aiden in which to build upon by providing enriching life experiences. To build this, we believe it does take a village. It's this village that helps Aiden's daddy and I understand how to make sure the foundation is solid and how to continue to move forward, building up and branching out

We DO want our baby to feel successful in an already hard world.

We know all this is possible. We know all this takes a lot of hard work. We know we need to work hard with him now, to make it easier later.

We'll figure it out and I'm seeking guidance from the true professionals who have been there done that to help us.

For those of you whose child has vestibular and/or sensory issues:

• Did you find that occupational therapy helped these areas?
• Are there any books that you found most helpful in helping you help your child?
• Did you find that these areas were affecting your child's speech progression and if so, what helped?

For those whose child sees a "traditional" speech therapist (in addition to another type of oral/auditory therapy or alone):

• What ways do you see this benefits your child?
• Do you work more on pronunciation and articulation?
• If you've seen an AVT as well, do you see the two therapies as completely different? Do you find they complement each other?
• If seeing more than one speech therapist - how do you manage them together? Do you ask that the lessons be similar or let each therapist do their own thing and work on something different?

Any feedback, thoughts, words of wisdom are greatly appreciated, even outside the questions I may not know to ask.

I have to say too, we don't spend our days constantly worried about Aiden. We are happy with his progress, yet concerned in the same breath. He's trucking right along with some bumps and bends in his path. We want to make sure he has the right means to a successful end. He has more "opportunities" (thank you Ethan's mom, I like using this word better than others) than hearing loss, and understanding and balancing them all can be quite the task. Sometimes I feel like I could work for the circus (especially when you add in Aiden's siblings which could be a whole other blog all in itself). Seriously. ; - )

Looking for Guidance on "This"

I've been debating sometime on whether or not to write about "this", but after having many sleepless nights thinking about "this", I thought who to better get advice from than the moms and dads who are there or who have been there. I've thought and thought about ways to say "this", ways to discuss "this" without sounding offensive to anyone on Aiden's team. We genuinely like our therapists and truly believe they have the same long term goal for Aiden as we do. It's a long journey to reach that ultimate goal, and I, as Aiden's main therapist, need to make sure we, along with Aiden's therapists, are a right fit as a team to reach all our goals ... for Aiden's sake.

I want to also say that we do believe Aiden is progressing along wonderfully. So this isn't about "our son not keeping up with the Jones'" type of post. I whole heartily believe that every child (hearing or not) is different and will get where they need to be when they're ready to get there with the right guidance. Would I like Aiden to be chattering more like others his age? Of course. But I know Aiden is Aiden and we are VERY happy with his progress.

What "this" comes down to is we don't feel we're getting the level of service we're used to when it comes to Aiden's therapy. Just some of the things I've debated and questioned over and over in my mind:

"Are we getting what is typical of Auditory Verbal Therapy and TOD services?"
"Should there be different kinds of homework after each of our sessions?"
"Should we be learning new activities week to week to take home and work with Aiden on?"
"Should our TOD (who is very supportive of our AV approach) and our AVT be in weekly or monthly contact to discuss Aiden's progress/lack of progress to help plan the next weeks/months therapy sessions?"

These are just a few things that go through my mind. The main thing is I do not feel comfortable right now, yet maybe it's me who needs to adjust?!? Maybe it's me who doesn't understand that what we're doing in therapy is typical. I don't know. What we get now, is somewhat different than what we received in Texas though. I always walked away from therapy with new ideas/activities/games, new books to read and songs to sing that all correlated with the Learning to Listen sounds/goal we were working toward, and most importantly, I walked away with a warm and fuzzy feeling of a nice productive day and felt good with the notes I went home with.

I know these are concerns that I have to bring up and discuss with my therapists. I believe that, together as a team, we have to build a foundation of what I expect of them, what they expect of me and if those expectations are not met, then be able to discuss our concerns openly. I do firmly believe that not every therapist is a fit for every student/parent ... and that's okay! But, when it comes to teaching my deaf child how to speak and listen, I strongly believe it is very important to have a solid, comfortable relationship with Aiden's therapists, especially when it's one that could last for years.

I just don't feel like I'm getting the "whole package". I admit, I'm the type of person who needs to understand everything, the type who has the need to always feel a step ahead. I not only want to understand what we're doing NOW, but I want to understand what's next, and then even what's after that. I want to see at least a dimness at the end of tunnel NOW, even though I know that bright light may be years away, just for my own necessity ... for my own warm and fuzzies.

So again, what I'm looking for is guidance from other CI/HOH parents/therapists and what happens in your therapies. I was going to give a synopsis of what we do in therapy, but decided against it. So my questions to you are:

• What does a typical therapy session "look" like?
• Do you focus on themed units for x amount of week(s) with activities/games to play, and language to incorporate?
• Does your TOD and AV (or any private therapist) work together on a themed unit to reach a common short term goal?
• Do you leave with a certain "something" to focus on for the next week or ? (homework)
• Do you leave with something new to incorporate into everyday routines?

Thank you in advance for all comments and/or suggestions! Any guidance is greatly appreciated!

Going for the Bilaterals

Aiden had his last behavioral soundbooth January 12th. Well, obviously not his LAST, but his last one before his big day (which is just three short weeks away!). They tested each ear separately and the results were very similar to his last test -- he showed responses, with his hearing aids in, at 45db to 50 db across all frequencies. What is weird is he always seems to dip a little in the middle frequencies, his audiogram looks like the speech banana to a sort.

We took the past month or two and really looked at all the pros and cons of bimodal (one CI and one hearing aid) and bilateral (two CIs). We researched and read all we could on each. We know families whose child(ren) have been successful with bimodal and bilateral CIs. We questioned and questioned, but what we always came back to was that bilateral would be best for Aiden. We decided to wait and make the FINAL decision the day of this past soundbooth, but with no improvements, our decision had been made.

Here are just a few things we looked at when making our decision.

What we liked about bilateral CIs:

• Better localization and better understanding of speech in noise-- Kids learn so much from other kids and we believe that bilateral CIs will be a huge help in the classroom - for the noise and to help determine whom is speaking and from which direction.
• Better sound quality and more sound balance
• Less fatigue at the end of the day - I know at the end of any seminar I attend, I am worn out. Who would ever think listening would be such a hard task, but for a deaf/hoh child, even with cochlear implants, it can be very tiring!
• If one side breaks, there's the second one for back up.
• I also read many personal stories from parents or kids themselves saying that their child became more social with peers and participated more in class once they were bilaterally implanted. I believe this has to do with confidence. I can relate this to one of my fourth graders. I knew his hearing could fluctuate due to fluid/tubes. Whenever he was very quiet in class, stopped participating, and was very apprehensive if called upon, it alerted me to contact mom. Once the problem was corrected medically, he was a whole new student.

Some of the places we found helpful information on bilateral CIs are here, here, here, and here.

In this write-up, Is Bilateral Really Better?, this wonderful mom (and mentor to all us newbies out here), did an excellent job comparing unilateral vs. bilateral CIs. And, as she states in her article, bilateral CI's are not for everyone. There may be significant usable hearing in one ear, there may be insurance issues, or maybe medical issues that do not allow for two implants among other things. We are lucky that we have the choice between bimodal or bilateral, and bilateral is what we've determined is best for our baby.

What we liked about bimodal:

When we started seeing Aiden doing well with his hearing aids and learned his deafness was due to EVAS, we started thinking about just implanting one side. Here are factors we considered when making this decision.

• Use of residual hearing -- Through the great use of his aids and his learning to listen, Aiden has shown us that he does have some residual hearing, and therefore the sound of music and sound quality in general could be better for him. With CI's you hear electronically, with hearing aids you still hear acoustically (the difference was described to me by the analogy of a song played on an acoustic guitar vs. the same song played on an electric guitar). In a bimodal situation, it allows for all sounds of speech through the CI (hearing aids provide more lower frequency sounds than the higher ones), yet still allows for natural acoustic hearing through the hearing aid. One thing we had to consider though, was with his EVAS, his residual hearing can be lost progressively, or one day, completely gone.
• Future technological advances - This has always been a thought in the back of our minds, should we "save" an ear for future technologies? We are sure that one day there will be better technologies, but we decided we needed to stay in the now and the known. NOW is the time that Aiden is in his prime learning stages and what we know is that cochlear implants will provide him optimal learning capabilities.

When researching bimodal, this is one article I found interesting.

All in all, we decided that bilateral implants are a better choice for Aiden and our family. Therefore, on February 11th (with certification from our insurance, which we're still waiting on, please cross your fingers all goes through!), Aiden will get his cochlear implants. Our surgeon agreed to perform simultaneous implant surgery, which will save Aiden from having to go through a second surgery months from now. Recovery may be a little rougher (hard to sleep on either side), but again, we feel this is the best for Aiden and we can't be more excited (or nervous)!

He Loves To Listen!

Are we doing the right thing???? This has been a huge question in our minds ... recently. There was no doubt in the very beginning when we were told Aiden would probably not have any response with his hearing aids. Since then, we have seen Aiden respond so well with his hearing aids. But, are they good enough? Will they give him what he needs to hear and acquire the sounds of speech needed to be successful in the hearing/speaking world we so want him to be a part of? These questions flood our minds every day. Every day we wonder are we doing the right thing for our baby.

Before we left Texas, they turned up his aids ... he's getting bigger and therefore can take on more. He responded ... he definitely responded. He's been responding and today in the sound booth he proved it ... he loves to hear. He didn't only respond to spoken language, but to what I call the boring "static/monotone" sounds. He responded to the "mmmm's", to the "ahhhhh's", and even to the "shhhh's". He showed responses not only through the infamous "binky" tests, but TURNED HIS HEAD TO ALL THE SOUNDS! Continuous responses at 50 to 60 db. Flat line ... all the way across all frequencies. His audiogram shows pretty much a flat line between 50-60db. My baby is definitely hearing something and all I could do was smile and cry.

All the countless hours of ...
...him pulling his hearing aids out and us putting them back in,

...nonstop talk and singing and narration,

...of making sure we talk to him within his "hearing bubble",

...giving him every bit of auditory information we can.

All the countless hours we just want to STOP talking, but keep on going ... he is responding ... and every minute of our time has been worth it. The soundbooth confirms what we see at home, but always question, was that a response?!? Aiden wants to hear ... his auditory nerve has such integrity, and we are doing something right!

So we've questioned ...

Does he still need cochlear implants?

Will hearing aids be enough?

Will his hearing keep getting better or will it get worse?

Can he learn to communicate in a hearing/speaking world that we want him to be a part of with just his hearing aids?

Should we implant one ear or two?

How could he have no response at 120 db unaided six months ago, yet test so much higher with hearing aids?

Aiden loves to hear ... his brain is getting ready for listening, and he loves it.

We know that Aiden will not receive all the sounds of speech with just his hearing aids. Could he learn to speak with just his aids? Probably. Will it be at the same level he would get from implants? Not at all. We don't want him to struggle any more than he has to already. Our goal is for him to be mainstreamed by kinder. or first grade and feel the least bit of difference possible from his peers. Either way, Aiden will always have to wear devices on his ears, whether it is hearing aids or cochlear implants. At his hearing levels, we know that the implant will give him opportunities to so many more sounds, at an age that is imperative to development for spoken language. We know in our hearts what the right answer is.

We have gone round and round with questions in our mind if we are doing the right thing for Aiden. This is a choice we are making for him, yet a choice I believe will benefit him for the rest of his life. We are empowering him with the fullest potential to hear and speak. We feel in our hearts that this is the route to take. Aiden wants to listen ... he hears and speaks to us everyday! He shows us he wants more. He shows us he is ready to take it all in. That he is ready.

I can't keep dwelling on the question to implant or not. I've questioned myself, I've done my research, asked my million and one mom questions to the professionals, and have done my own "mommy diagnosis" with my son. We're moving forward ... and there's no doubt, he's going to continue to amaze us each step of the way!