Doing what's best for...

While it's always a great time to see crowds of family and friends over the holidays, it's not always the easiest of listening environments for Hadley. I'm more proactive than reactive in these situations, mainly because the combination of excitement, sugar and high energy along with the listening challenges can be a recipe for disaster. While I normally give Hadley the time and space to make her own decisions, in crowded situations I'm usually ready to step in and speak quietly and directly to her, when necessary. For those family members and friends who generally see us during the holidays or at large gatherings, they may have the sense that this is how we always interact with Hadley, hovering and intervening. Hadley makes listening and communicating seem so effortless, it's easy for people to either forget that she lives with a very significant hearing loss and sometimes struggles.

Along with the holiday chit chat, I find myself answering questions about Hadley and her hearing from well-meaning, well-intentioned adults. For whatever reason, this year several people questioned whether some of my actions were truly necessary, particularly the act of physically moving closer to Hadley in large crowds to communicate with her. Couldn't I just sign? Rely on lip reading? It's such a chore to get up and move over to her; to quote one person, "sometimes you have to do what's best for mom", that there's a lesson for kids to learn in being put second. Why don't I do what's best for me? Certainly it would be simpler for me to mouth instructions across the room to Hadley, flip my hands or fingers a few times to get my point across. Why not?

Here's the deal: at nine years old, we're halfway through our time with Hadley. In just a few short years, she's not going to have a knowing adult keeping tabs on her from across the room, silently cuing and correcting her. These are the years where she needs us to intervene, so she knows what to do in the future when it's just her. We don't want her to develop simple coping skills, we want life skills that can carry her into adulthood and beyond. That may mean pausing my own conversations to help her now. I may be on high alert during new activities (like basketball this winter), not chatting on the sidelines but instead keeping myself available to clue her in now in order to allow her to be more independent later. Some might see this as hovering, but my intent is to get as much direct information into Hadley now so she can handle the world later.

So, yes: right now, we're doing what's best for Hadley. Our time will come at some point in the future, but we only have the present to get into Hadley as much academic and social learning that is possible. Forgive us if we let a conversation pause or lapse; if we take longer than what you think is necessary; if we intervene more frequently than you think you would, if in our position. And thank you to all those people who may not exactly understand why we do all these things, but support our choices nonetheless.

Telephone Time

As a preschooler, we made sure that Hadley regularly talked on the telephone to build up those pure auditory and listening skills. Dan called from work to ask specific questions about her school day, and she talked to other relatives frequently. Sometimes, when we were delayed in traffic, I handed Hadley my cell phone and had her explain to her therapist, Lea, why we'd be late to that week's AVT session. Hadley did not use the t-coil setting on her hearing aids, as she found it annoying, but we discovered that increasing the volume on the phone worked just as well. She did especially well with our old Uniden 900MHz cordless phone, so we invested in battery packs for that specific model to last us for years. With consistent exposure, she was turning into a pretty savvy phone user.

Then we had twin boys and I became, well, busy.

Hadley still uses the phone a few times a week but, as her language and people's expectations of her have increased, I've felt less confident in her abilities on the phone. Despite living in a world of texts and emails, phone skills are a life necessity. I've noticed improved phone conversations with the new hearing aids, which automatically switch to the t-coil setting when held up to a phone. On my long list of things I mean to do, I've been planning to increase opportunities for Hadley to use the telephone, but still haven't gotten around to it.

Yesterday afternoon, the telephone rang. It was a friend calling to talk to Hadley.

As I went to fetch Hadley in her bedroom, I was thinking about what I'd do. She's talked on the phone with friends before, but not recently and not with these aids. Plus, kids can sound a little slushy over the phone wires. Would I stay nearby in case she needed assistance? Hover? Suggest that she sit in a certain room to decrease background noise?

I handed the phone to Hadley, told her which friend was calling...and she took it and walked back into her bedroom, closing her door. Oh, the other option I had overlooked: letting her manage on her own.

A few minutes later, Hadley came downstairs, still chatting away. She found her backpack, took out her homework folder, answered her friend's question about math, said goodbye, and hung up the phone. Then she returned to her bedroom. End of story.

I have a tendency to overthink things, which (although, at times, useful) can be annoying. I'd love to know what they talked about; if Hadley controlled the conversation or if it was more equally shared; if she had to ask for clarification; if she misheard anything. I could make recommendations for the next time the phone rings for Hadley or suggest that she call a different friend every so often for regular practice. Or I could keep my questions to myself and let Hadley roll with it. I'll probably wind up somewhere in the middle, where I'll ask her to answer the phone for me more frequently and increase those opportunities more naturally.
Two useful tips for the telephone:

1. If you are in the market for new cell phones, consider those that have an intercom feature for calling between extensions. While I have no interest in installing a phone in Hadley's bedroom, I do ask her sometimes to bring an extension into her room. She might not hear me call her name with music on or the door closed, but I can page the extension and she'll answer.

2. While nothing replaces actual phone conversations, there are a few ways to practice without a partner. One that I particularly like is Cochlear's "Telephone with Confidence" program. Although designed by a cochlear implant company, their listening skills programs are suitable for hearing aid users as well. After calling into the 800 number, the listener can opt to listen to a short list of single words as well as a recorded paragraph, then go to the website to download the day's entries to read what was said.

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!

Pool Time, Part 2

Just when you think you've got it all figured out...

Hadley's summer of swimming has gone great in this first week, but there's always bound to be a hitch when you least expect it. Hadley and her cousins were swimming at a family party a few nights ago, and all was going well: her aids were out, but Hadley was able to lip read and modulate her voice just fine. She's able to swim well enough that I could relax (somewhat) and talk with my family while I kept an eye on her. All was great...until it became dark, too dark to see faces to lip read. Night time swimming is a new thing for us! I took Hadley out of the pool so we could decide what to do. She really wanted to get back in the water, so we agreed that I would sit near a tiki torch so she could see my face. By now the darkness and bugs had driven most of my relatives inside, but a few of the bravest kept me company for another hour. Other than trying to get her attention in the dark (a noodle to the head worked well), things were fine. While I don't expect nighttime swims to be a common thing for us this summer, I might have to add a flashlight and bug spray to our car bag!

Pool Time!

Summer is here and we are back in daily swimming lessons. Hadley's lesson takes place during open swim, so a portion of the pool is closed off for lessons while the rest is open for pool fun. This would not have worked for us when Hadley was younger-- far too many distractions-- but it's fine now. In fact, it's pretty nice because Hadley can arrive early for lessons, swim a bit, then get a little more practice in afterward.

After her last lesson, Hadley realized that some girls she knew were in the pool and went over to join them. Her waterproof hearing aids were long gone (they don't last after constant submersion), and I wondered how she was going to handle communicating, especially since these were not girls who knew Hadley extremely well. I chatted with the mom and stayed close by the pool but, in the 30 minutes they swam together, Hadley never once needed my intervention. Hadley organized most of the games, which allowed her to always know what was going on. Since there were only two other girls, Hadley was able to pretty quickly figure out who was talking. Hadley even modulated her voice, so she was neither talking too loudly nor softly. It was all just right.

Later on that night, when I was saying goodnight to Hadley, she said to me, "Isn't it great that I can do normal things, like playing in the pool with my friends?" While I'd like to think that Hadley is nonplussed by the differences in her life versus her friends, it's also great to know that she's as aware and thrilled with her accomplishments as we are.

Sticks and Stones

It was bound to happen at some point, but this has been the year of the put down.  Welcome to second grade!  Hadley is a frequent reporter of other people's behavior, so I've heard who-has-said-what-to-whom throughout the year (interestingly enough, I have not been kept current on what-Hadley-says-to-whom, so I can either live in blissful ignorance or let my imagination soar).  Hadley experienced her first put down of her hearing aids when one kid called her "Alien Head" (yes, to you ultra rad readers out there: I know the other meaning, and I can only hope that the 8 year old who said it does not.  And, no, I'm not going to define it, but the helpful people at Urban Dictionary can do that for you). 

After talking about the who-what-where-and-why's of the situation (classmate, while working on a team project, because they were arguing about which idea to use), we moved on to how this made her feel.  Hadley sighed, rolled her eyes, and patiently explained to me that kids will tease other kids about anything and that if she didn't have hearing aids, she'd be teased about something else.  (Hmm, looks like someone paid attention in those anti-bullying programs they ran at school this year.  Or they covered this in an episode of Phineas and Ferb).  And besides, the kid didn't know what he was talking about, since she needs hearing aids to hear.  There was really no need for me to add my $.02 so, other than silently noting that something I had once worried about was a complete non-issue, we moved on from it. 

With all of the spring sports going on, we've had loads of opportunities in the last month to see Hadley out and about with her peers.  One of us made some comment to Hadley about how she knows a lot of the girls and that so many of them came over to say hello to her.  She didn't roll her eyes this time but with a I-can't-believe-I-have-to-spell-this-out-out-for-you sigh said, "Everyone knows me.  I'm the only girl with hearing aids in school.  Of course they remember my name!" 

"Confidence in self", checked off the list.  Now just back to regular parenting, like making sure she's not the one doing the name calling.