July 25, 2009

The Importance of Conversation

I have to admit, it kind of irks me when people comment about Hadley's vast vocabulary or strong conversational skills, as if her skills are wildly abnormal. It's a weird thing to be bothered by-- it is a compliment to her, after all-- but the comments make me wonder if I went too far overboard in the early years of developing her spoken language. Did I do too much and now she sticks out? Many of us AVT parents have joked about how we now have to teach our children to stop talking or how they all sound like little adults with their expansive vocabularies. But behind each joke is a niggling concern that perhaps something we did in the name of therapy went above and beyond what was good for our child...

Added to this is the feeling that sometimes Hadley gets dismissed as an AVT superstar, that her skills and strengths are an anomaly and not to be expected of a "regular" hard-of-hearing child. Yes, she speaks and listens well now, but these skills were not developed easily, rather were the result of hard, hard work-- ours and hers. There were obstacles to overcome and long periods of time where we wondered how to blast through a plateau. There are still concerns, some large, some small. Just because she speaks well doesn't mean that there aren't underlying issues; living life with a hearing loss encompasses a lot more than just listening and speaking.

So, on the one hand, we work incredibly hard to provide a rich and stimulating environment for our kids that gives them ample opportunity to immerse themselves in spoken language. But, on the other hand, our kids can make it look so easy, so others have no idea of the extra effort they expend day after day after day. What's an AVT parent to do?

A fellow AVT parent shared this article last week (Conversing Helps Language Development More Than Reading Alone), which was timely as I was, once again, wondering if I offer Hadley too many opportunities to enrich her language. In short, the study examined the effectiveness of reading to a child versus engaging the child in conversation. While, of course, both are good things to do with your child, the study concluded that having a two-way conversation with your child aged 0-4 was six times as effective in developing strong language skills as talking at your child. Validation! All of those hours we spent prying responses out of Hadley were more important than the countless hours we spent reading together or narrating the world to her. No, we didn't buy a LeapPad or Hooked on Phonics or some other special DVD or set the timer to read 30 minutes a day to her. We talked. We chatted. We read. We conversed some more.

This doesn't solve the dilemma of our kids making their hearing loss look easy...that's an issue that I know we'll be dealing with on an evolving basis for years to come. But it's nice to be reminded that all we did for Hadley in those early years wasn't necessarily what we had to do because of her hearing loss. It's just good practice for any parent who wants to promote strong language development in their child.

Having been reminded of this...I have two 2 1/2 year old boys who need the same rich language environment that their sister thrived in. Time to talk, stop and listen more with them too!

July 24, 2009

Swimming Lessons, 2009

I have posted a bit about Hadley's success with waterproof hearing aids and previous swimming instructors. We've had an interesting summer with swimming to date. This June, Hadley resumed swimming lessons at a local swimming club. This place has been a great match for her because all of the instructors are actually adults! Previously, she had had fun in the water with her college aged instructors, but for the last year, she has actually been swimming. This is a HUGE deal to Hadley, as several of her friends swim on real swim teams and are concerned with time as opposed to actually swimming on their own!

We've tried something new this summer, which seems to be working so far. Rayovac has a new "Extreme Performance" line of hearing aid batteries that are supposed to withstand exposure to moisture, sweat and water...and, guess what? They kind of do! (ok, it's not perfect, but it is BETTER). After a 30 minute lesson (where her aids are consistently submerged), Hadley still can hear out of at least one water aid, sometimes two. In the past, she was lucky to get 10 minutes out of each aid. Not only can she hear the instructor, but she can chat with the other kids in the class, too. (Great for her, and me, too-- I've met another parent with twins the same age as mine!).

Instructionally, it's been a great summer for Hadley. She is swimming at what I would consider age level. I don't worry any longer about her swimming abillity when she is invited to a pool party. She feels so confident in her swimming skills and-- other than jumping off the diving board-- she's happy with what she can do in the water. She can easily switch from her regular aids to her water aids all by herself.

Are things perfect? No. But both Hadley and I feel a lot better about pool and swimming safety this summer-- and I'll take that over perfect any day!

July 22, 2009

Hearing Pride

Hadley sometimes makes comments about how her hearing is improving and that she thinks she can now hear sounds that previously were impossible to hear. Sometimes she even goes the extra step and states that she may not need to wear hearing aids when she is older. We've always been careful to be supportive, but straight forward with our responses to her. We talk about how she can understand more without her aids because she is working harder to read our lips and fill in the gaps with clues. We talk about how her listening and comprehension skills are always improving because she continues to work so hard on them. We talk about how technology evolves and changes and that the hearing aids she will wear in the future may be much smaller and different than those she wears now. We even talk about the scientific research that is ongoing with Connexin 26 and the special role she can play by participating in various studies that might help Cx26 kids who are born years from now.

In all of this, I've never thought about how Hadley feels about the amount of residual hearing she has (what she can hear without her hearing aids). I've certainly thought about how she feels about the amount of hearing she doesn't have, but not the reverse. As she gets older, she mentally catalogs the sounds she can hear both with and without her hearing aids, similar to how we tracked her response to sounds in the early months of AVT (ok, yes, it was on a spreadsheet and I had charts showing changes over time). There's a certain amount of wonder and surprise to this, especially when she realizes she has heard an exceptionally soft sound with her aids. She has a huge amount of pride in her ability to make these discriminations-- particularly when she is relying on the limited hearing that she actually has without her hearing aids. At a time in her life when I once anticipated she would be unhappy with what hearing she didn't have, instead she revels in the hearing she does have-- and, like the other AVT kids we know, makes full use of each and every decibel she has.

July 10, 2009

Things that Go Bump in the Night

When we moved into our new house two years ago, we asked the builder to swap out the regular smoke detector in Hadley's room with a smoke detector with a flashing light. While we have had ample opportunity to experience the system, last weekend we lived through what is probably the "perfect storm" of fire safety. An earlier nightmare had brought me to Hadley's bedroom, where I had fallen asleep. Her lights were off, her nightlight had been unplugged, and somehow her bedroom door had been closed. Her room was pitch black. Our smoke detectors (which are extra sensitive to humidity) went off in the middle of the night. I was up immediately, holding Hadley's hand, and heading to the door-- when/////suddenly/////I couldn't///// tell ////where////the door///was////because of the/////strobe////light/////from the////special smoke////detector. No amount of nightclub lighting could have prepared me for this. It took us almost 10 seconds to go the 5 feet to the door-- which I then promptly opened into Hadley's forehead since I was so disoriented. By the time we made it to the hallway, the alarms had reset themselves and all was back to normal. This left us with just enough energy to see the giant dent I had made in Hadley's head and fetch her some ice. Six days later, she still has a big bruise.

Lesson learned: add a nightlight to the outlet nearest to the bedroom door so you can focus your eyes on that. And add "call electrician to replace faulty detectors" to that long list of things to do.

July 8, 2009

Understanding the Hearing Loss, Part 2

After I posted the last entry on our ongoing understanding of what it's like to live with a hearing loss, Hadley read it. After quibbling over some of the details, she simply said, "Some kids think I'm weird because I wear hearing aids." Being slightly addicted to reading parenting books, I knew to wait and hear her out. Her complaint? That in her school, she is the only kid of three hard of hearing students who wears hearing aids (the other two children hear with cochlear implants). As far as she is concerned, "normal" for her school is being a cochlear implant user. We talked it out and she went to bed feeling like she didn't need to wish for a greater level of hearing loss that would qualify her as a CI candidate.

I can appreciate her feeling of being alone in a world of cochlear implant users. When we first investigated therapy options, I met all these families with kids who used CIs. In two programs, Hadley would have been the only hearing aid user (although we ultimately chose the Auditory Verbal Communication Center for other reasons, a nice bonus was the mix of kids with hearing aids and CIs). Over the years, the majority of the families that I have met and most connected with are those who live in the CI world. Where are all the hearing aid users??!

Rarely does timing occur as perfectly as this. Yesterday, I picked Hadley up from her morning summer activity and she was beaming over making a new friend. As the details emerged, I found out that a new girl had attended the class and Hadley saw-- TA DA!!-- her hearing aids. I couldn't have planned it out better even if I had tried.

July 6, 2009

Understanding the Hearing Loss

A similar question has appeared on several discussion lists that I read: "When did your child understand that s/he has a hearing loss?"

When Hadley was much younger, we gave her language about her hearing aids in the same way we talked about anything new: she had two eyes, one nose, one mouth, two ears, two hearing aids, two earmolds, one head... The physical aspects of her hearing loss were just incorporated into her own self. By the time she was a toddler, we talked about how her hearing aids helped her ears to hear better. She understood that she heard better when her hearing aids were on. As a preschooler at an integrated preschool, she and her friends could characterize each other's medical issues. Hadley has always been able to articulate what her hearing aids are and why she wears them, gradually adding more details to the specifics (I once overheard her talking about "mutated genes" to a classmate).

It's really been in the last year that Hadley has begun to talk to us about what it means to live her life with a hearing loss. Most of the time, her comments are about what she can hear: being surprised that she can hear the fire alarm when her hearing aids are out or being able to tell the difference between all of the bird calls in our neighborhood. When an adult told her that she needed to let him know when she didn't hear him, she was able to tell him that sometimes she doesn't even know that she missed something that was said to her. She has a greater understanding that she works hard to hear (see My Life), as well as an appreciation for what she can hear.

But there are still times that catch her--and us-- by surprise. A few mornings ago, the kids and I were playing in a room with all of the windows open. Her 2 1/2 year old brothers suddenly heard a fire engine siren and began to jabber on about seeing a fire truck while they raced to the window to watch the truck pass our house. Hadley had no idea what they were doing, no idea why they had suddenly raced away from her. By the time I explained it to her, she could hear the sirens as well and raced to join her brothers at the window. Later on, she became a little tearful with me, saying she was sad that she couldn't hear the sirens at the same time as everyone else, that she was always afraid she was missing out on things she couldn't hear.

Understanding what it is to live life with a hearing loss is a process-- for Hadley and for us. We now know that there is no magic age where suddenly all of the questions are answered. But each time Hadley talks about these moments of missed hearing, it's another chance for her to figure out what she can do when she is in the situation again.

Case in point: after the tears, Hadley suggested that perhaps her brothers heard the siren first because she was doing all of the talking, and they all of the listening. We came up with a few strategies that relied on visual clues or asking for clarification. Her solution? To listen more and pay closer attention to what the people playing with her are saying. Only an AVT kid would recommend more careful listening to the problem of not hearing something in the first place!