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.

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:

I have, I think, 3 different blog posts all bouncing around my head right now and haven’t been able to put words to paper screen.

In the mean time, Danny’s headpiece is still missing. Not only have we turned everything upside down and sent letters home with parents, but they actually disassembled the built in cabinet around the sink, because it could have fit beneath it. The thing has literally vanished. We ordered a new one today; we had the option of submitting it to insurance first, but considering that would take at least another week or two, and Danny has been exhausted listening with only one ear, we just bit the bullet. I figure I’ll try submitting it to insurance after the fact and see what happens.

We’ll have it tomorrow.

Danny has been thoroughly impressing me with how well he’s listening with just one ear. We switch sides daily so that both are continuing to be stimulated, and we’ve had to fight with more pulling off than usual (as it bugs him to be lopsided), but he’s doing well with it overall. The poor kid, whose normal bed time is 7:30, has been dragging by 6:30 though and falls asleep an hour early for naps.

If ever I doubted going bilateral, this has been an eye-opener for me. It is obviously so much easier for him to have both. I know kids do great with one, but Danny struggles enough, you know?

We’ll be bilateral again tomorrow. I, for one, can’t wait.

In a way, I’m surprised it hasn’t happened until now. I can remember as far back as Thanksgiving fighting the battle of the headpiece, where the small (not much larger around than a quarter) microphone/magnet/trasmitter of Danny’s cochlear implant randomly falls off and gets lost in all the strangest places.

It’s been lost in the strangest place of all now: nowhere.

Where, oh, where are you??

He’s been ripping them off and dropping them lately, a toddler attitude problem that is a combination of “I don’t want to hear what you’re saying” and “I want attention” that never fails to get people running over to him. So, when Danny went to open the gate between the toddler and 2 year old sides of his room at daycare, they told him no and he yanked them off.

He dropped them, and one was gone.

They’ve searched high and low. We’ve torn the rooms apart. Heck, the area director helped them look for it today. Still, it’s missing. Thankfully, being bilateral means that Danny’s still got sound, and he’s doing a great job with just the one. However, that’s a $375 piece of equipment, and we’d really rather he have two. On the positive side, it was lost inside. Imagine what could have happened if he’d lost it, say, in the yard…

So we’re down to one ear for a while. Next week we’ll look into replacements – how to get one, if we have an “oops” on our warranty, that sort of thing. But for this weekend, I’m just praying that he doesn’t lose the other one too.

Danny’s receptive language seems to come and go in waves, and I’m learning a lot of baby steps away that I never would have realized – never did realize with Eric – were steps in language development. It’s amazing the things you just take for granted until you have a deaf child, truly it is.

Things like telling your child to “sit down” in a restaurant when they’re trying to stand up in their high chair for the fifth time. (Which he listens to, by the way – or at least, he sits down, then pops right back up when he thinks I’m not looking.)

Or like baby patting the picture of himself in a book when Mommy says “there’s Danny!”

A lot lately, Danny has been paying a lot of attention to facial expressions and mouth movements. He’s mimicking a lot of them, and even if sound isn’t coming out, it’s easy to tell that he’s really starting to think about the way speech works. I was hanging out with the boys the other night and yawned, and Danny came up to me – right in my face – and opened his mouth as wide as it would go. Then, he just stared. After a moment of confusion, I opened my mouth like his, and he snapped his shut and giggled at me. It’s become one of our new games, and we’re adding an “ahhhhhh” with it too.

We do a lot of playing on the floor and the futon, and one of the best games, in Danny’s opinion, is “Crash!” When I played this game with Eric, it was basically me grabbing him around the waist and throwing us down into a pillow, yelling, “crash!!!” With Danny, I’ve expanded it a bit: “One…two…three…CRASH!” I pause between each, and really take care to exaggerate each number as I speak it. (Thank you, years in choir, for helping me pay close attention to pronunciation and vowel shaping!) The crash is usually fast and full of laughs, but the counting is full of anticipation as Danny stares at me, a little grin creeping onto his face.

A couple times, he’s popped back up and gotten this look of deep thought on his face. “Ah? Ih? Ee!!” The vowels aren’t exactly right, and the consonants are entirely missing, but you can tell…oh, you can tell exactly what he is trying to do.

The language Danny picks up is never the ones we try to get him to pick up. He’ll be completely mum when we try to prompt him to ask for food or drink or toys a lot of the time, and no matter how many times I tell him it’s a nose and poke it – mine or his – if I ask him where his nose is he just stares. It’s the things in play, the totally unexpected, not thought about, and easily taken for granted moments that stop me in my tracks now.

Danny and his deafness may not be teaching me patience – because I am plenty impatient still! – but he is definitely teaching me to appreciate all the little things.

I saw this in the paper a little while ago while it sat on the table in our lunch room at work, and have been meaning to bring it up ever since.

We’ve known for a while – OK, for a good long time now – that we are lucky to be in St. Louis with Danny. Since we’ve chosen an oral route for our family, it really is the place to be. We’ve got 3 solid oral-deaf schools, which do everything from help teach masters students training to work with deaf children to hold workshops in the summer that parents and families travel miles for.

The news story I saw was that one of the schools is reaching out to families outside of St. Louis once again, in a modern way. For years, the schools here offered residence programs that families away from St. Louis could send their children to, but as oral deaf schools start to pop up in other locations and resources become more readily available for parents of deaf children with hearing aids or cochlear implants, those programs have suffered and pretty much been put to an end.

Now, St. Joseph Institute for the Deaf has begun offering online therapy sessions, a first in the country. This opens up the boundaries so much for people with no local oral school to still get the guidance and therapy needed to help their kids succeed, without displacing families. St. Joe’s has put in all sorts of money to ensure they’ve got the technology and the secure connection, so sessions can’t be eavesdropped on, and they’re also reaching out to rural communities in the state to work with their school districts.

I love to see this kind of stuff. This technology is amazing, but I know first hand how much else is needed. It isn’t just a case of getting a child a cochlear implant and then – BAM! – they are talking. It takes a lot of time, work, and therapy. I think this new way of reaching out is awesome, and hope to see programs like this popping up all over!

The news story: New online program connects therapists with the hearing impaired

365 days ago, at this moment, I was a bundle of nerves as we got ready to head to the hospital and get our first hands on experience with a cochlear implant. I had no idea what to expect for the day, for the week, or even for the first year. I had high hopes, and I’d be lying if I said all of them have been met in this first year. Like in all things, Danny’s story is not a miraculous change as you see in some others. To be perfectly honest, I’ve had some emotional struggles as this date approached, because of all the other hearing birthdays I’ve heard about and how much further along they are at this point.

But, Danny is Danny, he takes his time and has been focused on other things instead – walking, eating, two handed play, so much in just the past 6 months.

His hearing today is such a miracle.

In this year, my deaf son has rediscovered sound. He’s been reunited with the sound of our voices, mine and dad’s and brother’s. He truly loves to hear, even if sometimes he isn’t all that interested in listening.

He babbles a lot today, m’s and g’s and b’s and y’s and so many different vowel sounds. He’s beginning to experiment with shorter phrases – mama, mama instead of mamamamama. He will occasionally screech or yell just to delight in his own voice, and will whisper “puh puh” at me sometimes if I pop my lips together.

He has no true words yet, but he’s starting to use his voice to request and communicate. He uses “mm mm!” pretty much universally to get what he wants, though has repeated “uh” and “owm” for up and down after prompting. (Well OK – he did “mowm” once and never repeated it, but I’ll count it anyway.) He knows that a monkey goes “ee ee aa aa” and will gladly say it back and forth with you over his monkey whenever you want. As for lings, he’ll repeat four: mm, oo, ee, and ah. Plus silence, of course; he’s great as modeling silence! He also echos “hi” and “uh oh” sometimes, though again, we don’t think with meaning yet.

Receptively, he knows his name, he knows to go to the gate when “it’s time to go” and to go to the garage when we “go to the car.” He understands no, even if he sucks at paying attention to it, and will “come here” or “give it to me” when we ask him to. (Usually. He is a toddler, after all.) He knows what to do for patty cake and peek a boo and waves for “hi” and “bye” without anyone else waving, if he’s in the mood, and will even “clap” for us too.

He loves the sound of his brother’s voice, and if they’re upstairs and I encourage them to “chase” he will take off running the path that they chase each other all the time. If Eric is making noises for toys (moo for cow, rrrrrrr for trucks, roar for dinosaurs), he will mirror it back in play much more reliably than he ever does with me.

If anyone is laughing and he hears it, back turned, around the corner, totally out of sight…he cracks up laughing.

He will look at me if I say his name in the running car with the radio on.

Ours is not a story of speed, but it is very much a story of success. His hearing is one year old. According to most resources, at 12 months on average, children:

-Use one or more words or fragments with meaning (fragments, yes)
-Practice inflection (yup)
-Try to copy new sounds (yup)
-Makes sounds to get attention, make needs known, and protest (yup)
-Follow simple one step directions, eg “sit down” (yup)

He may not be gaining ground just yet, but he’s keeping pace, and once he decides to focus on language he will flourish. I am so excited to see what the next year brings!

(And yes, lame amount of pictures, I didn’t realize the date and haven’t uploaded any of the photos I have of Danny lately!)

One of the hardest things to gauge in a child, I think, is their receptive language skills. It’s this reason that many parents wonder about their children’s language development before 2 years, and a large contributing factor to why so many deaf children are not diagnosed until after their first birthday if not later. If a child does not engage socially, has physical delays, even if they can’t see it’s usually pretty apparent quickly, but with hearing, there’s no telltale sign and no way to gauge whether a baby isn’t hearing or just isn’t reacting.

The flip side is that deaf babies do react to loud noises for other factors: vibration, air gusts, etc. In Danny’s case, he was more visual once he lost his hearing, so he would catch mouths moving in his peripheral vision and fooled everyone into thinking he was tracking voices.

To this day, I pull my hair out some days trying to gauge Danny’s receptive language. Obviously, at this point, you can tell he’s communication delayed – but what is he really getting? Being nearly 2, he’s prone to distraction and toddler selective hearing. Some days he throws me a bone and looks at me, giving a cheshire grin before blatantly ignoring what I said. Other days, he just doesn’t look at all, continuing about his business.

I figure a 50/50 ratio of listening means he understand it. That’s the best I can get.

Things I’ve seen him respond to, at times:

• His name, absolutely – he’ll stop what he’s doing much of the time.
• “Come here.” Yep, he does…sometimes.
• “Want up?”/”Up?” He’ll come over and (sometimes) reach up
• The sound of the microwave. He absolutely knows that means food’s coming.
• Monkey. If you ask him to go get his monkey, he will. He loves that thing.
• “Let’s go upstairs.” “Go downstairs!” Just this morning, I said this to him, and he stopped playing and went to the gate to go up the stairs.
• “To the car!!” My call most mornings; sometimes he’ll head to the door to the garage.
• Eat. (Ready to eat…time to eat…want to eat…) He definitely cues in, and sometimes goes to his chair.

I’ll admit, after reading so many other stories out there, I was hoping by his one year hearing birthday (a month away) we’d have a list of word approximations like this instead of a list of receptive language. That being said, though, this is still pretty amazing. He also loves to play with vowels – he’s only babbling a handful of consonants still (/m/, /g/, /y/), but he’s got a good number of vowels. Daddy will play monkey sounds (“ee ee aa aa”) or variants of it (“oo ee oo aa aa,” hahaha) and Danny likes to try to mimic along. He’s got 3.5 lings: ee, aa, and mm very strongly, and he has a sound between ee and oo that he uses for the oo sound. Depending on how cooperative he is in the morning, he’ll sometimes echo them back during a ling check, though he babbles them a lot more than that.

I’ve heard somewhere that kids have something like 50 receptive words before they say their first. At that rate…we may be waiting a while longer. But it’ll come, he’s making progress. I just wish it wasn’t so hard to gauge; he could possibly understand a lot more and we just haven’t found a way to recognize it yet.

Having a toddler – a very opinionated, stubborn toddler – can always make a trip interesting. Having one with cochlear implants adds a whole new dimension. Unfortunately, he is at an age where he takes to pulling one off randomly. Actually, I don’t think it’s random; most of the time it seems to be when one side falls off, he pulls the other off too. The one side falls off a lot, especially as rough and tumble as he likes to be, so it makes life interesting.

What makes life more interesting is that the headpiece on one side falls off too – completely off the cord. Now, we knew these couldn’t be too inexpensive if they didn’t give us spares, but it took looking it up when we got home to realize that tiny circle is worth $375… Yikes. On our trip alone, that tiny little sucker was found:

On the fridge
Under many chairs
Under the table
On the metal supports of the table
On the stairs
On the hassock
Under the hassock
On his processor, through the harness
On the car floor
In his jacket hood

You get the point. It was entertaining, and kept us all scrambling. At the end of a 3 hour drive opening the back door to find a headpiece missing was a lovely feeling, especially when it took us 5-10 minutes to find it.

Woo hoo.

There are days I feel like Super-Gluing the dang thing on there… But of course, the minute I do, we’ll have some kind of device failure and I’ll spend half an hour chipping the glue off so we can switch out the headpiece to see if it’s the problem.

I’ve had a few people ask me this lately that follow the website, so here goes.

Really, it’s a question that eludes me every time. Therapists, coming to visit every week or two, ask at the top of sessions and it stops me cold. How do you answer that? My brain scrambles to find an answer, something definitive, something relevant … something.

“He’s great!” doesn’t cut it, it’s too vague.

“He’s teething and is particularly crabby, thanks.” True, but not really what they’re going for.

“The same?” may also be true but doesn’t really accomplish anything. Change is slow, progress comes in spurts, and so often I’m left with a whole lot of nothing but the same thing I said last time. Babbling, but not with meaning no matter how much you and I would both like that. Eating, but his molars are killing him so he’s gone back to preferring softer foods. Walking, tripping, falling, same as he has been with his parents’ coordination in his genes.

Of course, then you get the non-therapists who ask, in which case it opens up a whole other line of scrambling. What’s too much? Do they really want details? He’s great, he’s a happy kid. He’s healthy, we’re dodging seasonal illness well so far, knock on wood. He keeps us in a perpetual state of wonder and worry, wonder that he is doing so well and has come so far, worry that there is still another shoe to fall and we’re living in its shadow. He’s developing nicely but never as much or as quickly as we’d wish for.

At our last speech session, his Claire – his speech/AVT/therapist/language/listening/hearing/TOD/type lady who shall forever now be known as his Claire even though sometimes we feel as though she’s here more for us than for him – gave me some copies of a resource that lists out steps in auditory-verbal development, and it gave me some ways to qualify “how’s Danny doing.”

He is pretty firmly in the stage where they’re just starting to piece it all together. To read down the list, it’s like a checklist of “yes, that’s Danny.” Imitates games like peek-a-boo and patty cake, vocalizes more when his implant is on, imitates mother’s vocal play, practices vowel sound vocal play (ah, oo, ee), plays with inflection, and babbles (though could do more of it!). He’s also starting to associate certain sounds with what’s happening … like if he’s hungry and fussing and the microwave turns on, he hears it and quiets, turning to it and waiting for food.

Receptively, he’s quite close to a 9 month level, which is awesome considering he’s almost 9 months listening age. He locates sources of sound, recognizes and differentiates between familiar voices (mom, dad, Eric), responds to verbal requests like patty cake and waving hi with only verbal prompting, raises arms when we say “up” and reach to him, and absolutely is starting to listen to his own vocalizations and babbles for babbling’s sake.

Expressively, he’s solidly hit all of the 6 month level stuff and is coming close to (but not quite at) the 9 month level stuff. We are still stuck at “mamama” and “yayaya” as his primary consonant babbles, but he is intermixing them and his vowels as he talks – “ahhh ma ma ya eeee ya ya ya.” He uses consonants like h and g as well, though not as often anymore. He babbles to get your attention and recognizes that words have meaning. “mm” is still more, and “ee ee” seems to be his general multipurpose “gimme!” He vocalizes for pleasure and for displeasure other than crying and is playing with inflection.

Is he super ahead or catching up at all? Not really. But, he is staying on track, and that in itself is awesome. On a non-listening level, he’s doing…well? It’s hard to tell sometimes, because a lot of the things you look for are related to hearing and understanding, where he’s obviously at a disadvantage. You look for whether kids can point to animals or body parts when you name them, whether they know to stay away from something if you tell them it’s hot, that sort of thing. He experiments with toys and tries to make them work. He attends better and better these days to playing with people. He’s spending more time with his peers rather than off on his own, more time watching people when they speak to him. He recognizes things in his day to day pattern, that the table and chair mean it’s almost time to eat, that getting his jacket on means going to the garage. When we’re getting dressed, he will help put his arms into his sleeves and get his legs into the right holes on his pants; undressed he’ll lift his arms to help take his shirt off and step out of pants.

All around he’s a happy, healthy, crazy, daredevil, clumsy, stubborn, brother-worshiping boy that is becoming more toddler every day. I almost hate to say it, but he seems to be leaving his CMV-developmentally delayed side behind and becoming more “typical” … for a deaf toddler with cochlear implants, at least. There’s still concerns, but they’re smaller.

And that … is how Danny’s doing.