November 30, 2010

Calling for Backup

It's always important to have people to fall back upon in emergencies. It's even more critical when you have a child with additional needs. When Hadley was a baby, I wanted to make sure that anyone staying alone with her knew how to insert the hearing aids and do some basic troubleshooting, like change a battery. If a person was hesitant to learn these things, it was a good indicator that I should leave Hadley alone with someone else.

Hadley's much more independent with her hearing aids, and my focus has turned more toward finding people who can handle the challenge of active twins. Last weekend, however, was a huge reminder of how important it is to have a strong contingency plan in place.

My husband became very ill, very suddenly the weekend before Thanksgiving, requiring a trip to the hospital. What began as a simple trip to the ER became a three day hospital stay, resulting in a call for backup help with the kids. We're fortunate (spoiled) to have frequent contact with my family who live just a few minutes away, and the kids were happy as clams with their extended sleepover. I was able to just focus on my microworld at the hospital, Dan focused on recovering, and the kids just did their thing. It went so well, my guys are now hoping another hospitalization is necessary so they get another three night sleepover!

While this was an extreme experience that hopefully won't occur again anytime soon, it was a reminder how important it is to have a "what-if" plan in place...and doubly important when your family is a little more complicated than the norm. This week has been a return to our regular routine: regular, boring old life is pretty good!

November 19, 2010

The Wheels on the Bus...

Regardless of progress or experience, one issue seems to always remain for parents of hard-of hearing children: determining whether a problem is due to the child or the hearing status. It's a bit of a chicken-or-the-egg dilemma. Is Sam not pronouncing the /s/ sound because he can't hear it or because there's an articulation problem? Is Cindy afraid of fire drills because of the loud sounds or a fear about her safety? Does Kim stand around on the soccer field because she can't hear the coach's instructions or because she's simply bored of playing soccer?

Most of the time, the cause has little to do with the ultimate solution and you can respond to the whole child, not just the hearing loss. I remember that, but then every once in a while, I'll completely jump the gun.

Hadley has a new school bus driver this year, a great person who is on top of everything that happens on the ride. I've had no concerns about Hadley and her time on the bus, until I recently noticed that she was taking forever to find a seat in the morning. As one of the last kids to board the bus, it can be a challenge to find a seat, but this was becoming agonizingly long (especially to the drivers in the cars behind the bus). I noticed she was often walking back to the driver to ask for assistance. I couldn't figure out what was the problem. Was she avoiding sitting next to older kids, or someone in particular? Trying to sit in a certain section to hear the driver? Could she hear the kids who were telling her where to sit? I could only figure out so much from my view from the driveway, but I was convinced this problem was due to her hearing.

While we're really trying to let Hadley fend for herself, I decided that it was time to intervene. In anticipation, I prepped myself with some possible solutions for Hadley. Turns out that all my guesses were wrong. Hadley has a friend who joined their bus route this year and is the final stop on the morning pick up. They like to sit together, so Hadley has been searching for a completely empty seat. It took a few weeks, but kids who used to sit by themselves now sit together to leave an empty spot for Hadley to grab. An Olympic sprinter couldn't get to the seat faster than Hadley does now!

Perhaps now I'll learn not to lose sleep preparing to solve a problem that doesn't even exist. It's not always about her ears...

November 11, 2010

Of all the things...

First off, thanks for all the emails and messages this week! It really cheered Hadley up to know that people were reading and thinking of her.

After a second consult with Hadley's ENT, we left wondering whether Hadley had an about-to-emerge ear infection or TMJ in her right ear. It was too close to call, so we opted to keep a close eye on the affected ear, continue with ibuprofen, restrict Hadley to soft foods, and follow up with a dentist. By Wednesday night, Hadley was able to insert her hearing aid into her right ear (first time in three days).

It just so happened that Hadley had a dentist's appointment already scheduled for today, where the dentist agreed that Hadley had TMJ. While it's a relief to have a firm diagnosis in hand, it's still a surprise that this severe ear pain has nothing to do with her ear! I understand the physiology, but it's still amazing to think that it just takes a tiny bit of swelling to make it impossible for Hadley to insert her hearing aid into her ear. Hadley now knows to be cautious about opening her mouth widely (when, for instance, yelling at her brothers), is avoiding gum, and already received some suggestions for mouth exercises from her music teacher. She'll be seeing an orthodontist soon to see what might plans might be in her future.

It's been a long, exhausting week for Hadley as she battled an infection in one ear and unknown pain in the other. While it's temporary and certainly not life-threatening, a friend reminded me that it's okay not to minimize this to others. Yes, Hadley will get through this and will return to (her version of) normal, but it's still been a challenging week...for all of us. For two days, she didn't hear...and she made the best of it. She relies on her hearing just like any other "typical" person. I'd be tired, cranky and confused, too, if I suddenly lost my ability to hear (add -ier to all of that; Hadley made this week look easy in comparison). We're all looking forward to a return to life as usual, with perhaps a better appreciation for how hard Hadley works every day to keep up in a hearing, listening world.

November 9, 2010

Living without Listening

The good news is that only one of Hadley's ears is infected. We're back on track with the drops her ENT wants (over-the-counter clotrimazole; quite different than what the pediatrician's office recommends), and Hadley should have a healthy ear in a few days. The better news is that Hadley's other ear just needed to be cleaned (even though it was just done six weeks ago). The bad news is that her healthy ear is still sore from the debris. She couldn't tolerate her hearing aid yesterday, and today is just the same.

I'm trying to remember the last time Hadley was without both hearing aids for an extended period and the answer, I think , is never. This is a hearing, listening, speaking kid; she doesn't like to miss anything. The last day has been challenging and exhausting for her. Although she is an excellent (self taught) lip reader, it's tiring and she expends a lot of energy in the process. She crawled into bed early last night and was asleep within minutes.

Hadley woke up disappointed this morning that her ear still hurt so much (I took a peek with my otoscope; it appears that the skin is a little irritated from the wax that was removed yesterday). She misses her friends. She's annoyed that she completed two school projects early and now is absent on the day they are due ("They're going to think I stayed home because they weren't finished!"). She's bummed that our downstairs television doesn't have captioning that works, but doesn't want to go upstairs away from people.

Surprisingly, there hasn't been a single complaint yet this morning. Hadley's doing the best she can while we wait for the ENT office to open. While I'm not certain there's anything we can do other than give her ears some time to heal, it's worth a co-pay to have that confirmed by someone who actually went to medical school. (This is definitely one of those times when I wished Dan and I had made different grad school choices!)

In the meantime, we'll stock up on library books and do some math. You don't need optimal hearing to practice math facts!

November 8, 2010

There's a Fungus Among Us

Will she ever get a break? Hadley wages an ongoing battle with otitis externa. She gets swimmer's ear just from taking a shower. (I exaggerate...but that's what it seems.) She dries her ears carefully after baths and showers, typically taken at night so she can leave her aids out and go straight to bed. Her ears are cleaned regularly by her ENT to avoid wax buildup (that can trap moisture in the ear canal). We've done vinegar solutions (approved by her ENT) as a preventative measure.

Regardless, Hadley is now experiencing her fourth or fifth fungal infection of the year. (I'm placing my money on last week's humidity as the most recent cause). She complained of the familiar aches, itchiness and swelling in one ear, and was seen by her pediatrician a few days ago, confirming what we suspected. She's been using ear drops ever since, forgoing the aid in that ear, and feeling better. Last night, she felt it starting in her other ear and woke up feeling worse.

Hadley's never had both ears affected at the same time, so being without both aids is a new twist. I'm readying my fingers to call the ENT as soon as the office opens to get her on today's schedule. While I know that one ear is on the mend and the other soon will be, I'm beyond frustrated that this continues to occur. By contrast, Hadley's a trouper. Not only is she enduring the pain and discomfort, but she hasn't complained about missing activities or going without her hearing aids. (It helped that she just happened to learn about a cyber friend's son and his frustrating obstacles with his cochlear implants. She's old enough to understand the different layers of challenges all HOH kids face.) Her only comment so far has been, "Isn't it kind of funny how it started in one ear and went into the other? It's like the infection is playing hopscotch!" Oh, and to ask for hot chocolate at breakfast. She knows how to work the system!

Hopefully, we're an hour away from having a scheduled ENT appointment and just a day away from getting Hadley back on track. An extra special thank you will be given to the nurse who can find an appointment that doesn't conflict with preschool pick up or today's dentist appointment, and happens when it's not sleeting outside. If we can't get a permanent cure for fungus, can't we at least get convenience??

UPDATE: This is why families need to work so hard to find great professionals to help their kids. I called the ENT office just as it opened this morning. My wait--even on a Monday morning-- was less than one minute to talk to the front office. I explained the situation to the receptionist, got transferred immediately back to a nurse, and received an appointment for later this morning, with Hadley's actual ENT. We're on our way!

November 6, 2010

When adults say stupid (yes, stupid) things

Having been acutely aware of each and every word Hadley heard and learned in her first five years, I'm very conscious of the words I choose to say around my kids. I choose my issues about a lot of things, but I'm a stickler for polite language. So, it was a bit of a shock for Hadley to hear me say to her the other day, "That was the stupidest thing I've ever heard an adult say ". And I meant every single word.

Hadley and I were out and about, just the two of us running some errands. A 65ish year old woman waited on us and, while staring at Hadley's hearing aids, stumbled for words. "Are she wearing...?" I filled in, "Yes, those are her hearing aids." The woman looked directly at Hadley and commented on how fancy they were. So far, all normal. We have these kinds of conversations all the time with adults. Then she said the stupidest, dumbest thing an adult has ever said to Hadley:

"You don't really need them, right? They don't look real. Are they part of your Halloween costume?"

I really encourage Hadley to speak up and answer questions on her own, but this went beyond the call of duty. I assured the woman (well-intentioned, I know) that Hadley's hearing aids are real and that they make aids in cool and fun styles. Hadley was stunned into silence, trying to figure out how to respond to a smiling person who had just delivered a zinger (albeit, unintentional). She managed to quietly confirm that these were, in fact, her hearing aids and finished up the conversation. We scooted out the door, where I said my fateful words, "That was the stupidest thing I've ever heard an adult say", along with, "I'm proud of you. You taught her something today."

I know we all sometimes say things that come out the wrong way, especially when confronted with something we are trying to understand and figure out. Hadley was at first pretty sad about this encounter-- not in a dramatic "She said my aids were a Halloween costume!!! Can you believe it??!" kind of way, but a quiet, I'm-going-to-go-sit-quietly-by-myself manner. Hearing me use the word 'stupid' shook her out of it, and we spent a minute or two talking about how the woman didn't mean to hurt Hadley's feelings, that it was okay to feel sad about the encounter, and how Hadley had handled the situation well. She's brought it up a few times since, and the story is quickly becoming "The Time Mom Called a Woman Stupid" story that will end up in our annals of family history.

You know what? I'm completely okay with that.