what I'm learning from my hearing impaired child.

As I was getting dinner ready the other night I could hear Johnny and Trixie playing in the next room. All of a sudden Johnny raised his voice and shouted, "No Trixie! My train. Time out. One.....two.....three...."

Most parents get pretty used to hearing their children imitate their style of discipline. Some so much so that it may become an annoyance. But to hear Johnny sentence his little sister to a time out actually brought tears of joy to my eyes. 

Because he was talking, all on his own. 

These days our house is filled with the sound of Johnny's voice. But it hasn't always been like this. 

Johnny was born with a hearing loss. He was just four days old when we received this diagnosis. It came on the heels of a whole slew of other diagnoses, a NICU stay, and major surgery for Johnny. So when the audiologist told us that he had a mild to moderate, bilateral (both ears) hearing loss, it seemed like small potatoes.

Johnny was fitted with hearing aids when he was 8 weeks old and we thought we had dealt with his hearing loss. But by the time he was 20 months old his speech was severely delayed and it was clear that his hearing loss was something we would be dealing with for a long time.

We started taking him to weekly speech therapy at our local children's hospital. The therapy sessions were helping, but not as much as we would have liked. Then when he suffered major setbacks with retained fluid in his inner ear, had PE tubes put in, and had his hearing loss re-diagnosed as moderate to severe, we knew we needed to take more proactive measures. We enrolled Johnny in an oral school for deaf and hard of hearing children. The transition was hard, for all of us. (Picture me looking at photos of Johnny on my cell phone and crying while he was at school) But it was definitely the right decision. He has been receiving very intensive speech therapy 4 days a week for almost a year, and for the first time ever we are really hearing him use his voice all on his own initiative. 

I've been the parent of a hearing impaired child for almost 4 years, and the learning curve has been steep. Of course Johnny is worth any struggle, but this experience has been made even more valuable by the lessons I've learned along the way. I know they are making me a better mother, and I think they apply to parenting across the board and are worth sharing here. 

I am my child's number one advocate. We are fortunate in that we live in an area where there are multiple organizations for deaf and hard of hearing people, and parents of deaf and hard of hearing children. We have an amazing children's hospital system with a wonderful team of ENTs and Audiologists. And our public school system has a very aggressive and supportive early intervention program.

But even with all these resources and experts available, my husband and I are still our son's biggest advocates. We are the ones who are with him everyday. We can see what's working for him and what's not. And since he can't speak (much) for himself yet, we speak for him and help make his needs known.

In Minnesota we have something called Minnesota Nice. It's where you smile and be polite and try to avoid making anyone feel uncomfortable. I'm learning that I need to step outside of my Minnesota Nice comfort zone from time to time to get the results my child needs, whether it's being more assertive with the scheduler at the doctor's office to get him seen sooner, or switching speech therapists even though it might be awkward.

Education Matters. If I had a dollar for every time I was at the park with Johnny and some other kid pointed at his ears and said "what are those?" I could buy myself a pair of Frye boots.

I used to get annoyed by people asking about Johnny's hearings aids, and by answering the same questions over and over again. I didn't want anyone to single him out by drawing attention to his hearing aids. I wanted to people to treat him like every other kid.

But I am learning now that people won't be able treat him like every other kid until they understand his hearing loss, and so I am happy to educate them.

Those are hearing aids. He wears them to help him hear better, just like I wear glasses to help me see better. He was born with a hearing loss. It probably won't ever get better, it might even get worse. But he hears pretty normally with his hearing aids on. No, they don't hurt him. Yes, he takes them off when he sleeps. Yes, he can still do all the things you can do.

But the education doesn't stop with telling people why he wears hearing aids. I also need to educate people on how they can help Johnny reach his maximum hearing potential.

Crowded rooms, noisy car rides, being outside on a windy day, these are all settings that can make it difficult for Johnny to hear. But there are things you can do to help make up for that difficulty. Make sure he can see your face when you're talking to him. Tap him on the shoulder before you start speaking so he knows who's speaking to him. We have chosen not to use sign language in our house. With the craziness of Alex's school schedule, and having a baby in the house it was not a good fit for our family. But there are a few signs that we know and use, and we do plenty of gesturing when speaking to Johnny. Something as simple as pointing to the thing or person we're talking about can help him out a lot.

Understanding comes before expressing. Because Johnny's speech is pretty limited it's easy to fall into the habit of only using words that I know he knows. But if I only did this then Johnny would never learn any new words. I have to remind myself that he is capable of learning language, and that he has to hear a word anywhere from 1 to 100 times before he will start to use it.

Parents are their children's primary educators, even if the child goes to school outside of the home. That means it's up to me to keep challenging Johnny, introducing him to new things, and giving him the opportunity to improve. I do want to make sure that he can understand what's being said to him, but it's not my job to make things easy for him. It's my job to help him grow.

Intellect is shown in many different ways. I think this is something every parent knows to be true, until their child shows a lack somewhere. Then all the doubt floods in and the comparing starts.

Because Johnny's speech was so delayed for so long, it also delayed a lot of other learning milestones. He wasn't naming animals or imitating their sounds. He didn't know colors, or how to count. He couldn't identify any extended family by their names. I never would have said out loud that I thought he wasn't intelligent, but I think deep down inside I was afraid he wouldn't be successful in life.

Around the time Johnny's speech was at it's very worst we started seeing a new speech therapist who knew how to draw Johnny out. In that first 50 minute appointment with her Johnny said more words than he had said in all his previous appointments combined. "He's doing really well!" she kept saying to me. I just stared in stunned silence.

At the end of the appointment she told me not to measure his intellect based on how much he's able to say. Verbal skills are probably the easiest way to measure a child's intelligence, but they're definitely not the only way. When I started to look for his intelligence in other area's I began to see it everywhere; in his ability to do puzzles, and build with blocks, his fine motor skills in holding a pencil or using a scissors. I started letting him help me with chores around the house. I was amazed to see him folding pieces of laundry and putting shoes away where they belong. I let him help me unload the dishwasher and he sorted all the silverware correctly and knew in which drawer or cupboard all the dishes belong.

Evaluate how you define success. Johnny's speech is doing so much better than it was a year ago. He's counting, identifying shapes, colors, animals, letters of the alphabet, and he's able to communicate his thoughts and desires. He still has a lot of work to do to catch up with his hearing peers, but we are hopeful that his hearing loss won't limit him as he grows up.

I do still worry sometimes about the future, and that Johnny won't be "successful" in life. When I find myself thinking those kinds of thoughts I need to ask myself what my definition of success is. Is success getting into a great college, getting a high paying job, and being esteemed by many? If so, then he might not be successful. Come to think of it, Trixie, or any other kids we may have, might not be successful either.

But what are the things I really want for my children? I want them to know and love God, and to know that they are loved by Him. Then I want them to know that they are loved by Alex and me. And I want them to use the skills God has given them, and to have close and meaningful relationships to help carry them through the challenges of life.

If this is my measure of success then Johnny is well on his way.

So This Happened Today.....

And I'm kind of a mess.

Johnny had his first day of school, much sooner than we originally thought he would. 

We've gone through a lot with Johnny's hearing this past year. First his speech was regressing, then we found out he had fluid in his ears and wasn't hearing anything.  Then he got tubes in his ears, and he started seeing a phenomenal new speech therapist. 

About a month after that Johnny had his hearing re-tested with a sedated ABR test. We learned that his hearing has gotten worse.  It's hard to describe how much worse, since it's certain frequencies he can't hear, and it's different in each ear. But categorically he went from having a mild/moderate hearing loss to a moderate/severe hearing loss. Of course the first question we had was, will his hearing continue to get worse? There's really no way to know, and we will just keep monitoring it. At this point his hearing aids are still able to compensate for his hearing loss. Theoretically he's hearing normally with his hearing aids. But if his hearing does get worse hearing aids may not be able to make up all of the difference and then he would be a candidate for cochlear implants. 

The results of the hearing test made me sad for my boy, and anxious about his future. I know as a parent you can't protect your child from everything. Not everything in our children's lives can be, or should be easy. It's good to struggle and face adversity because that is how you grow and develop resiliency and character. But Johnny has already been through so much. He already has to work harder than most kids his age. I know there will be hard things in his life, I just really don't want expressing himself and communicating with others to be some of those hard things. 

Two days after we got the new diagnosis for Johnny's hearing loss we visited a oral pre-school for deaf and hard of hearing children. And it was amazing. A few kids had hearing aids, but the majority had cochlear implants (so that means they are completely deaf) and they were talking like there was no hearing loss whatsoever. They were talking like they weren't limited by their hearing loss, and that's what we want for Johnny.

So we started the enrollment process, applied for financial aid, and waited for the school to let us know when he could start. I knew it was coming, but when we got the email with his start date I still got kind of sad. He's only going three days a week, and it's only for half days, but he's my first baby and he's never been away from me.  

Even though he drives me a little bit crazy most days, I'm not quite ready to have him away. I like our time at home, the freedom to stay in our jammies all day, or go see friends whenever we want. It dawned on me this morning that, for the most part, that phase of motherhood is over for me. Starting now I will have kids in school for, oh I don't know, the next 20 years! Or more! I will be in my 50's when I'm done having kids in school! I kind of don't want to go there right now. 

Right now there is just this first day. Our first morning scramble, our first time getting his backpack ready, our first time walking him into his class room. I cried a little as I watched him settle in with all the cool toys. Then he cried a little when we said goodbye to him. The teachers assured us that it will get easier and he'll love it in no time. I know they're right, but I was still so relieved when one of the speech therapists texted me a picture of Johnny playing with some trains. And even more relieved when he was back home and I could say, we made it.  

Right now we will adjust to our new routine of  doing this three days a week. And I will cherish those two days a week I'm not taking Johnny to school, when we can stay home in our jammies and snuggle. Yes, right now there will be lots of snuggles.

7 quick takes vol. 23


Alex doesn't have class on Fridays. But he tries to spend most of the day studying, and I try to let him study most of the day, so it's really not much different than a class day. EXCEPT that he doesn't have to get up at 6:30. Today we got sleep in all the way until 6:45 before Johnny woke up. We have sort of given up any hopes of sleeping in any time in the next 10 years. But at least on Fridays we can move a little slower in the mornings and have breakfast together. 


I got my hair cut yesterday! 

I had been growing my hair and bangs out for about a year, using Blake Lively as my long hair inspiration.

Yes. And when I've finished my morning coffee I'll just go up stairs and make my hair look like that. Said no mom ever.  Oh wait! She is a mom. But now I'm just getting off subject. 

My hair, surprisingly, never turned out like that. Blowing it out took forever, having it up gave me headaches, and most days it just got pulled back into a greasy low ponytail. 

Like this! 

So I gave up and embraced the Mom Bob because, after all, I am a mom. But I added bangs because bangs = instant style.

Oh. Did I put on make-up and use some fancy VSCOcam filters to make my after pic look way better than my before pic? 

Absolutely I did. 


So there's been a development in my Walking Dead plans. We had watched through season 5 on Netflix, and then I read something about season 6 premiering this Sunday. I was getting all geared up for our special valentines-walking-dead-stay-home-date and figuring out where we were going to watch it online when I discovered A: that you have to have cable to watch it on AMC.com and B: this is a MID SEASON premiere! Meaning there are 8 whole episodes out that I have not yet seen!  

What am I going to do? Anyone have any insider tips for where/how I can watch my zombies? 


Want to try something fun? Use a breast pump with a toddler in the same room. 

'Nough said. 


I made pho (pronounced fuh) last week for Alex's birthday! (Sorry, no birthday photos!) It turned out pretty good, except that I forgot to add the soy sauce and fish sauce. Pretty staple Asian flavors. Oops! So I can only imagine that it will be awesome the next time I make it. 


What's Trixie been up to, you may ask? Well, she started rolling over this week. I have no evidence of it. She doesn't perform for the camera, so you'll just have to take my word on that one.

But here she is doing her other new trick: holding on to her feet!


Today Johnny had an appointment with a new speech therapist.  There was nothing wrong with our old therapist; we really liked her. But one week shortly before Trixie was born she was sick so we had a sub instead, and it was the best speech therapy session Johnny has ever had. I can't quite put in to words why except for that she just knew how to work with Johnny. I immediately inquired about her with the scheduler and found out she normally works out of a different location that's about 30 minutes away from us. I'm very spoiled in that everything I have to go to (church, grocery store, pediatrician, speech therapy, even our parents houses) are all about 5 minutes from our house. Driving across the city isn't really something I do. So I just thought, oh well! And then Trixie was born and we continued with our regular therapist.

But with everything that has been going on with Johnny's speech regression and fluid in his ears, Alex and I thought it was worth revisiting the possibility of switching therapists.  So today we made the trek to the far far away clinic and had a trial session just to see if the magic was still there.

And Oh! Gentle Reader. It was there. Johnny was saying words and making sounds he has never said or made before. I couldn't help crying tears of joy because most days things are hard and his progress is so slow and I'm not sure it we're doing the right things for him. But today was good, and I knew we had made the right decision.


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The Tale of Johnnys Ear Tubes. Or: I'm Still Learning How to be a Parent

We were thrown into some intense parenting when Johnny was born almost three years ago. The learning curve was steep and we had to run to keep up. Parenting Johnny required knowledge of things I never could have imagined I would need as a parent, like how to change a colostomy bag, or how to nurse a baby without pulling out his hearing aids, and what a left superior vena cava is. I remember feeling so overwhelmed by the information being hurled at me, like parenting would never be normal, or easy. (Little did I know, parenting is always crazy, no matter your circumstances). But the Lord was requiring of me something different than what I had imagined, and I had no choice but to rise up and face it full on.

And you know what? I survived! We all did.

Facebook recently reminded me that Johnny had his (hopefully) last GI surgery two years ago. It seemed like we would never be done with that colostomy bag, but now it's a distant memory.

Then things settled down for us quite a bit.  Johnny started speech therapy, and we've had to deal with some pretty bad diaper rash.  But aside from that, parenting has been pretty "normal" these last 2 years.

I liked that things were going well and we didn't have to worry about anything, and that life was going the way I expected it to. So when Johnny stopped hearing this fall I think I didn't want to admit it.

It's easy to blame things on toddler-hood.

He's not responding to us because he's a toddler.

He throws a lot of tantrums because he's a toddler.

Speech therapy isn't going well because he's a toddler.

What was really going on though was that fluid was collecting behind his ear drums and not draining, taking his hearing loss from mild-moderate to profoundly deaf. He hasn't been hearing us. And the thing that kills me is that we have no idea how long it's been going on. We do know that in September his ear drums were working normally. And then in December they weren't.

He was referred to get ear tubes, and after the referral it took almost 6 weeks to get it done. So worst case scenario, he went four months without hearing. But now he's got his ear tubes, the ENT said she drained a ton of thick, goopy fluid, so that's good. We still have some follow up testing to do, but it's looking good.

So here's the part where I'm still learning how to be a parent.

Around the time Trixie was born I began to suspect that he wasn't hearing. But I didn't say anything or schedule any tests because no one else noticed it.  That was my first mistake. You can't wait for the experts and the professionals to tell you that something's wrong, because they don't know your kid like you do. You have to speak up for them.

Then, when we finally did figure out that he wasn't hearing us it took SO LONG to do something about it. Everyone is booked out so far. And that brings me to my second mistake. I was afraid of being impolite. Maybe it's Minnesota Nice, maybe it's German Passive-Aggressiveness. Whatever it is, I don't want to inconvenience anyone or ruffle any feathers. So when I called to schedule a consultation for the ear tubes and the ENT was booked out 3 weeks I said "ok, that's fine!" But after one week of scrambling to learn some sign language to use with Johnny and seeing how eager he was to communicate I knew it was not fine.

I was back on the phone with the scheduler, pleading for something sooner, expecting to be denied, when she said, "Are you free tomorrow at noon?"

Parents, you gotta speak up for your kids, even though it may be annoying or inconvenient for someone else. As the old adage goes, "the squeaky wheel gets the grease."

The consultation held no surprises, Johnny was declared a candidate for ear tubes. Then it was me and the scheduler again, trying to find a date when we could do the tubes and an ABR hearing test at the same time.  He needs to be sedated for both, so it makes sense to do them during the same appointment and avoid a second sedation. But because this would involve the ENT and the Audiologist, scheduling was tricky and the earliest availability was four weeks out.

Four more weeks of him not hearing.

I had this nagging feeling that maybe in this case it would be better to sedate him twice to get the ear tubes in sooner, but it took me three days to do anything about it. I called our pediatrician (aka Alex's dad) to see what he thought and he agreed with me, we should get the tubes in right away and worry about the ABR test later. I called the scheduler on more time, was annoying one more time, and she got us an appointment one week later.

So I guess this is what I'm still learning about being a parent:  You have to trust your gut and speak up for your child, because no one can advocate for them as well as you can. And don't worry about inconveniencing someone in the process, because that doesn't matter. Usually people are happy to help.  But you have to speak up first.


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Johnny Speaks

When Johnny is focusing hard on a toy, or looking curiously at something going on outside and we can just see the wheels turning in his head we often say something like this: "I can't wait until we can hear what's going on in that little head."

We're still waiting. Johnny has such expressive faces. It's easy to figure out what he wants or needs. But he remains, for the most part, pretty silent. Sometimes he does pipe up and babble or coo or sing. Then we say something like this: "I love to hear your pretty voice!"

And oh how I want to hear more.

During the first week of Johnny's life, as we were receiving all of his diagnoses, his hearing loss was the least of our concerns.  I was getting letters and phone calls from all the deaf and hard of hearing associations in the state wanting to sign me up for their news letters, and get me involved with a mentor, and put me in touch with a speech therapist and sign language instructor.

And I was so annoyed!

My child is not deaf. He can hear. And his hearing aids are correcting the hearing loss he does have. So what's the big deal?

But as things have wound down with other medical needs, as he's gotten older, and people keep asking, "does he have any words yet?" and we keep saying, "no, not really." we've started giving his hearing loss more attention.

Johnny signing "help".

It's hard to say whether Johnny's speech delay is related to his hearing loss, or if it's a part of his shy and stubborn personality. He was born with a mild to moderate hearing loss, he's been wearing hearing aids since he was 2 months old, and theoretically with the hearing aids on, he should hear normally. But he is still at risk for speech delay.

Because of that risk, and the fact that he was 20 months old and had only one word ("up") we started weekly speech therapy appointments in January. They are first thing Monday morning and oh I hate starting the week with a frantic morning of hurrying to get diapers changed and breakfast eaten and coats on and out the door. And sometimes Johnny's shyness and stubbornness dictate the appointments and he doesn't do or say anything and I wonder if it's just a waste of time. But all and all I think it's been good.

Johnny signing "bath time".

The speech therapist first encouraged us to give sign language another try, which we had done very halfheartedly when Johnny was around 8 months old. We did, and within a week Johnny was signing more, all done, bath time, and milk. since then he has added help, open, diaper, waiving bye bye, and a very fuzzy version of the sign of the cross! It's pretty cute to see him sign, but it's even better to see how proud he is when he realizes he's communicating with us.

Johnny signing "more".

After he mastered some signs we started trying to get him to say the word with the sign.  This has been a lot harder than just signing. And it often seems like no progress is being made. But he is making progress. Before we started therapy the only word he had was "up".

Now he says all done, more, help, up, bye bye, papa, mama, hot, open, ("mmmpa") and sometimes he'll bath time. He also says ball, bite, and bus, but they all sound the same. And he babbles. He babbles all the time. Well, not at therapy.  At therapy he is basically silent. But at home he babbles all the time. He knows what he wants to say, and he's starting to say it to us.

And I love to hear his pretty voice.


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