Filed Under (Cochlear Implants) by Kel on 09-08-2011

When there’s a 3 year old involved, things are bound to get broken. Of course, since they are with him most waking moments of his life, Danny’s cochlear implants occasionally take the brunt of this, and once again he is down an ear for a day. Somehow – don’t ask me how – he managed to snap off the headpiece where the wire connects into the processor. Yeah, it was a good one.

Though Danny does not talk, there is never any hesitation or doubt in me about whether we were right to get him his CIs. He hears and listens phenomenally. Every morning, even with just one CI on, we do a quick bounce back and forth. It started as just ling sounds, and I’ve worked in some of the other things he works on with his speech teacher at school. “Ah! Ee! Oo! Oh! Mm! Ss! Sh! Hee hee! Lalala! Ha – Ha – Ha!” It is so automatic, so easy for him these days, and it’s amazing to watch and take part in.

More than the feedback we get from him, though, is how he obviously wants to hear. A moment this morning that I just needed to record for posterity… I put on his one working CI, clipped it to his shirt, and smiled brightly at him, telling him good morning. He looked at me for a moment with a slight frown, then took my hand and placed it on the side of his head where the other CI should go.

He can hear just fine with one, but he wants them both.

He’s such a sweetheart it melts me some days.

     

 
Filed Under (Cochlear Implants) by Kel on 11-02-2011

Two years ago, Danny’s cochlear implants were activated with many hopes and dreams of the journey that was ahead of us. A lot of the blogs I’ve seen out there hit the 2 year hearing birthday and the posts are beyond incredible. They’re the dreams I had on that day: talking in full sentences, at or above age level for speech and language, hit the ground running kids who are nothing but amazing.

We’ve known for quite some time that Danny isn’t that kid, and this isn’t that blog.

Last year, for the first anniversary of his activation, I struggled a lot with it because I knew how far Danny was from what so many people experienced. This year, I still know how far he is – but I’ve come to peace with it, and have found new hopes and dreams to replace the old “typical” ones. Maybe cochlear implants haven’t done for us what they have for many families, but you know what? I still wouldn’t change a thing, and I will never regret it.

Danny hears. Finally, after a pretty long phase of being so thoroughly TWO that we wondered if the things were even turned on sometimes, he listens. When Eric laughs, Danny laughs. When Eric screams, Danny screams. When we say his name sternly, he at least stops to look at us, even if he goes right back to what he was doing. I can lean down and whisper in his ear, “Time to go to the car,” and he will stop what he’s doing and trundle off to the car, ready to climb in.

I can ask him where the “Red Bird” and the “Green Frog” and the “Black Sheep” are in his Brown Bear, Brown Bear book and he will happily point to each of them.

He can hear a cat mewing and respond in turn, “ee-ow!” He can pick up a stuffed Mario doll (a la Super Mario Brothers) and give it a kiss with an emphatic “mmmmwah!” because he knows that’s what an exaggerated kiss sounds like. He can light up with glee whenever we sing “All the little fish are swimming in the water,” and he can sit in his room pushing buttons on his Baby Tad and do the motions to Twinkle Twinkle Little Star when it begins to sing.

He loves to play “ball,” is best friends with his “Mickey,” enjoys helping “put in” laundry, and will always “sit down for your seatbelt, Danny, so you can have some fruit snacks!”

He knows what the beginning of some of his favorite videos on YouTube sound like, and beelines for whichever computer is playing them, because he can tell where the sound is coming from.

He stops when he hears a phone ring, looking to me expectantly, and he laughs when he hears leaves being blown across the pavement by the wind.

If we go to McDonalds to play in their playland, because heaven knows boys need to get the energy out somehow during the winter, he pauses when we take his CIs off and looks between them and the playground, utterly torn between the two. (The playland does, however, win out in the end – if only because Eric runs by and his big brother trumps all in his world.)

Maybe Danny isn’t talking or behaving at an age-appropriate level with his speech and language, but even if he’s not the best case scenario, his CIs have given him – and us as a family – so, so much. There are moments daily that never would have been possible without them. Sure, we could have made sign work, maybe. The effort we have put into that path hasn’t rewarded us a thing though… He’s never shown any interest. We can share laughter, comfort, and joy through sound, and I am so thankful.

I said 2 years ago that I had witnessed a miracle, and I have continued witnessing them ever since. They may not be big and flashy, and he may never be a poster child for cochlear implants, but they’re our miracles. To this day, it’s still not uncommon for John and I to share a glance like, “Seriously – he just heard that? Isn’t that amazing?”

And you know, it really is.

     

 
Filed Under (Cochlear Implants) by Kel on 08-01-2011

See anything different? Yep, I do too. Danny has ears!

I honestly didn’t notice it all day today. John mentioned it a few times. Maybe more than a few… He saw it right away and is taking a while to adjust. Me, I didn’t notice until I settled down after the boys were in bed and started going through my pictures. They aren’t bad – but they’re certainly noticeable!

As for why…

See, the other correct answer to what is different in the first picture is that there is no harness! Danny has literally shed a few pounds overnight; there’s no telling for sure, but we’re fairly certain he enjoyed not having the extra weight and the crazy encumbrance. I know I’m enjoying not having to deal with it! We got his BTEs (behind-the-ear processors) programmed yesterday, charged the batteries (which I had forgotten to do beforehand), and we busted them out today. I gave Danny an opportunity to see them, feel them, and explore them first. He turned one over in his hands, flipped the switch a few times, turned the dial, stuck the two magnets together, and gave them a pretty good checking out. After that, I set one on his ear…and he promptly ripped it off.

Oh joy.

A few more patient tries later, trying to time as closely as possible putting the processor on his ear and the headpiece on his head – aka, linking the ear annoyance with having sound – I asked in desperation, “Danny, do you want some milk?”

He stopped fighting the BTE’s instantly, smiled, grabbed my hand, and walked me to the fridge.

He left them on all day. Seriously, other than a handful of times that he took them off – a couple because the volume control had been knocked and it was way too loud, a couple because it was close to nap- or bed-time and he was tired – he didn’t touch them. There were a few times that they were off (had knocked off or whatever) that he grabbed one and tried to stick the whole thing to his head like it was one big headpiece. He very quickly related that these new devices let him hear, and he was all for them. We still need the kid-friendly accessories (a snuggie to hold it to his ear so it doesn’t randomly pop off, a clip to make sure it stays close if he does come off), but day 1 of BTE’s was a huge success!

     

 
Filed Under (CMV & Special Needs, Cochlear Implants) by Kel on 23-09-2010

I’m a big believer in words. Of course I am – I like to read and I like to write. I think there is a lot of power in words, and unfortunately, I think a lot of the time people choose the wrong ones. How something is phrased is incredibly important, and though well-meaning, I’ve read and been told a lot of things over the years that, looking back, I wish I’d never heard.

“CMV is easily prevented if the mother practices good hygiene.”

Now, there is some truth at the root of this statement: hygiene helps in preventing many illnesses, and CMV is one of them. However, what that basically says is that those of us with cCMV babies don’t practice good hygiene. What? Wait a second. Maybe I’m not the cleanest person on the face of the earth, but I’m not a slob. I wash my hands. I shower frequently. Especially when I’m pregnant, I make sure I’m aware of things I need to be aware of. What I didn’t do was stop being a mom: finishing my one year old’s leftover chicken nuggets and giving him sips out of my drink to teach him to use a straw. For quite a while, I was particularly angry that I didn’t know about CMV, that no one told me that I should stop sharing drinks with my son. They certainly told me plenty of other things to stop doing – eating cold deli meat, scooping the kitty litter, coloring my hair, sitting in the hot tub. And you know what? I did all those things. Just like I washed my hands and avoided the flu during a bad flu season. Hygiene wasn’t my problem, awareness was.

“The success of young kids with cochlear implants if 10% technology and 90% parental effort.”

When I was first researching cochlear implants, and when we were going through the implant process, I heard so many variations on this theme. I heard it on listservs. I heard it from doctors. I heard it on sites promoting Deaf culture and naysaying cochlear implants. I heard it on sites debunking sites naysaying cochlear implants. I think the only place I didn’t hear it was the deaf school, where they phrased it more around parental involvement being an important piece; most everywhere else stressed that the success of implanted kids was proportionate to the amount of effort the parents and caregivers put in. Now, there’s something positive about that, and it can make you feel great. “I’ll do everything the therapists tell me to, and my child will succeed!” Isn’t that a shiny concept? If you do what you’re supposed to, it works! …But what about when it doesn’t? What if it’s slow, or if it doesn’t work? Then you think back to that shiny gold ring and see that it’s now tarnished, and it’s now turned on you. If the success is 10% technology and 90% parental effort, and the technology is working, then where does the blame fall? Yep, you guessed it: the parent.

“The saddest thing is a child that can’t communicate.”

I had someone say this to my face. In fact, it was coupled with something along the lines of, “If he doesn’t make a lot of progress in the next 6 months, you should probably start exploring other opportunities [than teaching your son to listen and speak].” I dwelled on this for a long, long, long time after it was said to me. Honestly, I’m still sort of dwelling, though I’m moving past it (slowly). This was easily the most harmful thing ever said to me, I think, because in one fell swoop it made me question every decision I’ve made about Danny’s hearing, challenges whether he would ever be successful, and implied that I am currently doing him great disservice that make others pity him.

Words have power – a lot of it. I had a conversation today about how lately people having been using the word “try” a lot in relation to Danny, and how it makes me feel like there is an option of failure, like people are starting to question how successful we – and he – will be. Maybe I’m nitpicking the words, but there is a big difference between “John and I are teaching Danny to use his cochlear implants to listen and speak” and “John and I are trying to help Danny learn.” Do or do not. There is no try… Right?

One of my best pieces of advice to pretty much anyone suffering some parental guilt is: don’t listen to them. You know your family and what’s best for you. If you know that you did your best with what you know at the time … Good.

Don’t let the words have power over you. They’re just words.

     

 

As I get ready to call AB and spend another $400 to replace another headpiece that my son has lost (this time in our own house!), I figured I would do a bit of a recap of where Danny’s at with his cochlear implants to help justify all this expenditure. There are days when I get weighed down in the lacks, the lack of understanding, the lack of listening, the lack of words. Danny wasn’t saying the 20, 50, 100 words at his first hearing birthday like so, so many CI toddlers I read about. He isn’t putting 2 words together at 15 months post-activation. He isn’t stopping when I shout after him to stop as he’s trying to run into the street, or even hesitating. Of course, there are many things he is doing that are amazing, and not just related to language. He just loves life so much, is so full of joy. (Usually.)

Danny shows these glimmers of ability that get my hopes up, and then nothing happens for weeks. I told John yesterday that I’m torn between believing he will one day just suddenly speak in sentences and believing he will never talk.

So, what is he doing? Don’t look now, it’s list time!

Danny is saying appropriately, and without vocal prompting:
“uh oh”
“a-a-ah” (banana)
“oh-eh” (open)
“mmm” / “ow-k” (milk)
“oik” (oink)
“ah oo ee” (one, two, three – before doing something fun like sliding, crashing, flying, etc)
“mama” (we think, at least; I’m on the fence about this one.)

Danny is understanding:
Danny, milk, banana, come here, down, up, eat, go to the car/time to go, upstairs, downstairs, no, bye bye, peek-a-boo, stomp, jump, kiss, bang, give me the ___ (whatever’s in his hands), high five, open, close, feet, tummy, mouth, nose, eyes, sit down, stand up, outside, chase, slide, clap, in, all done, walk together (meaning, hold my hand and stick close!), Patty Cake song, Thumbs Go Up song, Open Shut Them song, Twinkle Twinkle song, Who Came to School Today song

There are probably more receptive words he understands in a school setting that I don’t run into, but those are the ones I see often at home.

That’s pretty darn good for a deaf kid.

He’s not gaining ground and making leaps and bounds like many CI toddlers, however, he’s at the language development of a 15 month old: says 3-6 words, has his own language of babbles, uses gestures and the “toddler grunt,” knows a handful of body parts. Slow and steady, right? I remember thinking, around the time Eric turned 3, how awesome his language was…so that means I only have another 21 months to slog through before I can breathe a sigh of relief. Of course, at this age Eric had a lot more consonants.

No comparing allowed!

These are two very different children, no matter how attached at the hip they are. They both keep life oh so interesting with their own unique challenges. (The more I pay attention, the more it’s quite obvious Eric’s going to be a lefty. What am I going to do with a left handed child??) And even when I’ve spent the whole day turning our house upside down and inside out searching for a tiny circle of electronics, one of them climbs in my lap and I start to tickle, and everything is lost in toddler belly laughs.

     

 
Filed Under (Cochlear Implants) by Kel on 16-05-2010

I would hate to say that I take one moment of life with Danny for granted; we have fought, he has fought, far too hard for that. But I do some days; I take for granted that he can walk, can laugh, can eat, can even listen! I snuck into the bedroom to get my slipped this morning with John sleeping in, and I heard the door creep open behind me, so I did what anyone would do: I rushed over, said in a hushed voice, “Danny, let’s go downstairs,” and gave a sigh of relief when my son turned around and did as I’d asked.

Then, as I quietly closed the door behind me and put my slippers on, I realized what had just happened – and what a true miracle it was. There was no signing, no gesturing, just my whispered voice and Danny’s pure understanding.

Just now, I told Eric he needed to wash his face. I told him to get around his mouth, and Danny immediately opened his mouth as wide as he could. Seemingly random, perhaps, but that’s what Danny does when we ask him where his mouth is. (Stinkin’ cute, too!)

A lot of times, I write about what Danny says and hears, and I think to myself how hard it is to really describe in words the little miracles of our life with cochlear implants. I finally took some time and some structure to show off a few of the fun things Danny is up to these days – by no means all of them, but if you notice at the end, he was quite clear that he was done with listening and showing off for the camera. (As soon as I put the camera down and took the tray off the highchair, he tried to put them back on, then after letting me help “fix” them, he ran off babbling and laughing.) Danny at 2 years 2 months old, 15 months hearing age: