August 25, 2010

(Preschool) Lessons Learned

This summer, my 3 1/2 year old twin boys did a three week session of preschool, a mini introduction of what to expect come September when they "officially" start. (If you ask them, they will tell you they are now on summer vacation. That's right, 21 hours of preschool has given them the right to be on break.) We've opted to send them to our town's intergrated preschool as model peers, both because of our own confidence in Hadley's integrated experience and because it's what Conor and Brady selected. I was looking forward to the practice, not out of concern for their transition but rather to help me improve on getting three kids ready and out of the door on time!

While this particular integrated preschool is new to me (Hadley went to preschool in our old town), it's located in the same building where Hadley did K-2, so it's familiar territory to all of us. Conor and Brady got off without a hitch. I'm always on hyper alert when I'm out with my sons for security's sake, so I usually don't have a moment to talk to the other adults. After the first week or so, we were into the routine and I could stand down on my guard a (slight) bit. When I used to wait for Hadley at preschool, I'd join in on conversations about therapies or juggling doctor's appointments: the general topics of raising a child with different needs. This time around, as I looked around the clusters of parents, I realized that, to them, I'm not Hadley-the-girl-with-hearing-aids' mom. None of them know that I've lived through this before with an identified child. The point was really hammered home when one of the teachers very nicely offered to tell me a little more about integrated education and the general needs of some of the kids. For a split second, I kind of felt that the badge I've earned with the years of services with Hadley had been stripped away. I know about this! Really, I know!

So, off we start on the preschool journey for two typically developing boys. It's strange not to be thinking about team meetings or accommodations, prepping the staff on equipment, or evaluating the classroom for any challenges to a good listening environment. And, even though I'm doing it with two kids instead of one (and at the risk of jinxing myself), I'll say it: this is a piece of cake. I keep double checking to see if I've forgotten something, because this is all too easy. You mean all I have to do is send them in with a snack and pick them up on time? With pleasure!

Third grade starts for Hadley next week. She has her teacher assignment, the sound field system is in place in the classroom, and her backpack is already stocked with hearing aid tools and supplies. Conor and Brady start preschool in two weeks. They have their backpacks, snack bags, and extra bag of clothes. Bring on September!

August 17, 2010

They're Not YOUR Friends!

Here's the catch: You meet the professionals. They are, in all sense of the word, professional. They are the lifelines to your goal. It doesn't matter their role, their age, their gender: you will do whatever they say in order to get what your child deserves (after researching the advice to the nth degree, until you trust their knowledge). Some will have a front desk staff. You will kill them with kindness, because you need these people on your side: to get faster appointments, receive calls about cancellations, be squeezed into the calendar at the last minute. Your notes have little comments in the margins, marking children's names, spouses, any personal information. You are pretty much willing to exploit any possible connection you might have to, again, get what your child deserves.

Then, suddenly, you realize that you actually like these people! You are no longer being friendly just to win them over, it's because they are really nice people.

We have an amazing group of professionals who truly care for Hadley. We lost the dead weight early on and built up a team of people who want-- in fact, insist upon-- nothing short of the best for her. Along the way, we have relied heavily on their expertise and advice as we made tough choices for Hadley's future. In the nearly nine years we have been on this expedition, I have come to know everyone very well, trading stories between ear mold fittings, sound booth visits, ear examinations, scheduling appointments and therapy activities.

One problem, though: I'm not the patient.

In the past year, Hadley has made it very clear that her medical appointments are about HER, not me, and I should keep the chit chat to a minimum. She's exactly right, but it's hard to break old habits. Plus, I like these people! Sure, we don't make plans to get together (or, at least, not all of the time), but they all know that if they ever need a hand, we'd offer a dozen.

However, these are her appointments and not my social calendar, so I've made a concerted effort to let her run the show, add her input, and minimize my mouth until she has had her say. Some days she asks that I stay in the waiting room (okay at the audiologist's office if it's a routine visit, not okay at the ENT where she'd be waiting alone in the exam room). Sometimes she even beats me to the punch and makes inquiries about the new baby or house or recent vacation.

After all, she now knows these folks as well as I do, too.

August 16, 2010

Demo Days, Take Two

Hadley returned to the audiologist late last week for a few more adjustments to her new hearing aid program. She has been pretty happy with the new Phonak V SP ever since. She comprehends more easily, processes information faster, and has requested far fewer repetitions. She's not as exhausted at the end of the day. I've also noticed that she puts her hearing aids on immediately each morning; in the last few months, they've been going in five or ten minutes after she wakes up. While that's a small amount of time, it is a big difference for a kid who used to put her aids in before she even got out of bed in the morning. She's also leaving them in until just before she falls asleep at night. Hadley has never been reluctant to wear her hearing aids or eager to take them off, and there may be absolutely no connection to this change in recent habit, but I thought it was interesting to observe.

Hadley was at the beach every day for over a week, requiring her to wear her waterproof hearing aids. I had wondered if her improved hearing through the demo aids was going to affect how well she liked her ancient waterproof aids (with ten year old technology!), but there was no mention of any difference.

As tough as it is to say, our decision to buy these aids will be based on how much better she hears with these aids versus their price tag. It's only been two years since we purchased the last set, with the idea that she'd wear them for closer to five years. Hearing aids are pricey and, as of now, are not covered by insurance (although Massachusetts is working on a bill to provide coverage for one aid per ear every three years). Hadley has been a hearing aid user for just over eight years, and we've paid (out of pocket) close to $15,000 on hearing aids alone, plus another $5,000 on ear molds, batteries, and hearing aid accessories. At $6.50 a day, that's a small price to pay for what we get in return...yet, it all adds up. We're fortunate that, by forgoing vacations or other splurges, we can contemplate these bills, even in a year that has been financially challenging for us. There are loads of families who don't have that option.

So, we'll continue to watch Hadley closely and note the improvements these news aids bring to her world. Of course, by the time all of the adjustments are made to optimize these aids to her hearing loss, Hadley's brain may have completely adjusted to hearing with this different technology, making a return to her old Siemens aids difficult (especially at the start of the school year). That $123.50 in coins that we wrapped yesterday may be put to good use!

August 9, 2010

Demo Days

Thursday afternoon, I picked Hadley up at science camp and gave her the new aids (Phonak Naida VSP) to trial. Once they were in, the very first thing she said to me was, "Your S sounds different. It sounds like a snake hissing." I let her know that she was probably just hearing more of the sound than she had before. Another minute passed, and she commented that everything was softer. This we expected, as the Phonak hardware is different from Siemens. I've been told by several audiologists that Siemens is loud, Phonak soft, and that a transition to Phonak hearing might not work for Hadley. Given the technology advances that Phonak has made (and Siemens has not), it was still worth a shot. I simply spoke a little louder, and Hadley was fine. She mentioned that my voice sounded robotic, which bothered her. This was when the camp exhaustion kicked in: she needed food and rest! Once home, Hadley vegged out with a movie; having her focused on listening and following the movie was a good way to let her adapt to her new hearing. By dinnertime, she announced that everything sounded better.

I already see improvement with these aids. I've kept track: Hadley has asked "What?" exactly four times since Thursday afternoon, each time when a brother was yelling next to her. She comprehends conversation immediately; before, it was as if she was on a two second delay while she pieced everything together. She's relying less on lipreading and visual cues. Listening on the phone isn't quite working for her, but that's probably something that can be fine-tuned with the software or improved with practice; sometimes each aid has its own sweet spot for listening that must be found through trial and error.

Hadley is liking these new aids as well, especially the size (they are almost 1/2" shorter than her current aids and fit more snugly behind her ear). She's finding it easier to listen and hear. However, she keeps hearing a crackling sound (that I can't hear when I listen to the aid; this might be her hair moving across the microphone) and doesn't like how sensitive the aid is when she lies her head down (with her current aids, if she pushes her head down on a pillow, she can stop the feedback. This is not happening with the trial aids). She asked last night if there were other aids to try out, so she can see what else it out there.

We return to the audiologist later this week for booth testing, where we will learn what impact these aids have on her hearing and discrimination. Overall, it's nice to know that are aids that give Hadley better access to sound. I like that she's being a smart shopper and is open to trying out other aids. Hopefully, we'll have a better idea of all of her options in the coming week.