The Oral-Deaf Dinner and other General Updates

Finally getting around to this.

The day we had our dinner was the same day that we found out that Alex was going to be eligible for CIs. That was a pretty huge boost, so we walked in feeling pretty good.

The event itself was held in the basement of the building, so we got a quick look at some of the classrooms / playrooms that were setup. ¬†Dinner was catered by a popular local restaurant. We sat down front and center and met with two other couples with hard of hearing kids. I can’t think of any remarkable conversations we had there, except that one of the couples knew in advance that it was going to be a near-certainty that their child would have hearing loss due to genetics (the mother wore hearing aids). That didn’t stop them, which is no surprise, but I thought that was sort of an interesting dynamic. Also nice – we got some good face time in with the administrator of the program, who is the same sweet woman who was kind enough to physically meet with us and tell us about the oral deaf school months back. We also saw our teacher of the deaf, speech therapist, and audiologist. Definitely feel blessed to have that kind of supporting cast who all work together.

The actual discussion was setup as a Q and A with four kids sitting at the head table. ¬†One of the kids got a little shy and jetted out of the table, leaving three kids; one unilateral CI boy (I want to say he was about 9) and two twin girls (I think 11 or 12, but I’m sure my wife will correct me on this). One of the girls used two hearing aids, one used one hearing aid and a cochlear implant. I think they all started off with a quick introduction. Once they got to the boy with the CI, I definitely perked up, because this would be the first time we’d hear speech from a CI graduate of our boy’s future school.

And it was perfect. No affect detectable.

Now, his little boy did just give off a very quick and smart-alec remark, but it was enough to get a sense for how good his speech was. It was pretty cool to hear. He only had one implant, too! The downside to his smart-alec remark is that the crowd gave him a pretty big laugh, which guaranteed that every other answer he gave from there on out would be a one or two word deal looking for the same response, but that was sort of cool in itself. He’s a little boy, acting like a little boy.

The girls were pretty amazing. They had speech affects, but I didn’t really notice after two or three sentences. Great self-advocating, they explained that they were both great students, the works. Two very inspirational young ladies that definitely showed off a maturity beyond their age.

Throughout the talk I was amazed that these three kids were functionally deaf, yet here they were, hearing all of our questions without a hitch, talking about their experiences going to mainstream schools, etc. It all seemed amazing to me, and made me feel even more hopeful for Alex given that he’s going to go through the same program, but with another ten years worth of experience and another ten years worth of technology advances at his disposal.

I can’t think of too many answers that were given that really stuck out as interesting, but that’s probably because I’d already done lots of research so I was able to anticipate a lot of the answers. One of the topics that stuck for about 15 minutes was FM systems (an FM system is basically a wireless microphone that you give to a teacher / speaker / whatever that sends their voice directly into “listening” cochlear implants or hearing aids). It was a good conversation about how it’s important to keep them on and the struggles to maintain them, but it got a little long-winded given that most of the audience members wouldn’t have to deal with them for at least another five years or so. Sports was another conversation that went on for a bit and it went into some of the challenges CI users have there (helmets, waterproofing, hearing in loud environments, etc), but my takeaway was that it’s all absolutely doable with a little extra work. No problem, we’ll do extra work. The kids talked a bit about how they’d get pulled out of their regular classes occasionally for special speech therapy and things of that nature. That was a SLIGHT bummer to hear about because it’s another thing that’s going to broadcast to Alex’s peers that he’s different, but again… we’ll deal with it, just like these kids and their parents did and do.

Overall, I didn’t see anything really too surprising, but to see the kids in person was pretty inspirational and I liked seeing how the teachers interacted with the kids. You could tell that they had formed some pretty deep bonds.

I think that about covers it.

Nothing too new going on at the moment outside of that. I have to call our ENT and see what’s what in terms of making sure that our insurance is lined up and what they’ll cover – I just read on our Facebook group that many insurance companies will cover TWO speech processors per ear so that there’s always a backup, that’d be nice! We always have a close eye on Alex’s PT. He still likes to bob around, but as he continues to demonstrate that he can hold himself up in a sitting position firmly, it makes the bobbing look more like him saying “I don’t want to be held like this right now” vs. a physical issue. Regardless, it’s something we want to continue to stay on top of.

The genetic testing results still make me nervous when I think about them, even though we apparently won’t have those in hand for another month or two. Just really hoping that his deafness is all we have to deal with and worry about.

Past that, life is actually sort of normal. Alex still wears his hearing aids all the time even though we keep them off most of the time because of the incessant whistling, but he does great in NOT swatting them off. Hopefully that trend continues on and we get lucky enough that he doesn’t hate his CIs, because once he has those, they are staying the hell on. We’re going to take advantage of every minute of hearing time that we can early on and get this kid going.

Something we’re starting to investigate now is getting an FM system that we can use with Alex that we would own – most parents don’t have one because they’re typically only used at schools, but I’d love to have it for louder environments, long car rides, that sort of thing.

We still have early intervention appointments frequently, but they’re starting to feel routine and just slight pains in the ass rather than an invasion of our lives.

We’re still constantly concerned about Alex and his future, but it feels like things are starting to normalize just a little bit.

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First Appointments: Teacher of the Deaf / Speech Therapist

I’m way behind on writing. In some ways, I think it’s a good thing, because I originally started this off as just a place to vent off steam. As things have sort of calmed down and we’re not in complete terror / panic / depression mode, I’ve had less steam to vent. Regardless, we’re still very busy, still a lot going on. I have a lot to write about, so maybe I’ll try out this blog scheduler thing and tear a few blogs out right now.

A few weeks back, we had our first appointments with two more of Alex’s early intervention people; his teacher of the deaf and speech therapist. They’ll both be working on different things with Alex, even though the gigs seem very similar.

Starting with the teacher of the deaf – as is with all of our early intervention team, all of Alex’s therapies will either be at our house or at his daycare. I had a LITTLE bit of trepidation over this one initially, partially because I wasn’t sure what to expect. I thought this might actually be a deaf adult who would teach us some of the ropes and maybe push ASL as the only thing Alex should be working on right now or something (if you don’t know, the existence of CIs is a source of great consternation among some of the more… passionate… members of the Deaf community). I didn’t want to feel pressured to go that particular way. At the time, I knew that my fears were probably ridiculous. Our Early Intervention coordinator knew what our goals were, knew we had already expressed great interest in the speech center’s oral-based program, and that any teacher who was too militant about pushing toward an ASL-only route would probably not jive well with us.

I’m happy to report that my trepidation was a complete waste of energy. As it turns out, our TOTD is actually the main teacher at the oral school we want to send Alex to! That’s huge, since Alex will be with her all the way up until kindergarten (assuming, as always, that he’s eligible for cochlear implants). She works with the kids in the program all of the time, she’s seen what works well and what doesn’t, so to have her involved early and often is huge.

As far as the content of the first meeting with her, it was sort of introductory boilerplate kind of stuff. She told us about her, what she did with the kids at school, schedules, and the general things we would work on. A lot of good info exchanged. Some of my favorite tidbits that came out of it:

  • The kids at the school get live music therapy once a week. Cool to see that the school doesn’t take the attitude of some of the more negative or older opinions of CIs in that their users can’t enjoy music.
  • Unlike Auditory Verbal Therapy, which seems to be the most common sort of therapy done with children who get implants to learn to communicate orally primarily, the system that her school uses doesn’t discourage lipreading as a tool. AVT has had a great amount of success (we see it on the Facebook parent board all the time), but I think lipreading is a tool. I don’t want Alex to lean on it too much, but if he uses it to get a little help in understanding what’s being said in loud environments, I’m all for it.
  • That said – the school DOES emphasize listening as much as possible. Our teacher told us that they regularly ensure that the kids are listening by calling their names and asking them questions when they’re not looking, for example.
  • She likes that Alex is in daycare for a few days a week – it’s good practice to listen in louder environments as well as good for socialization skills (some kids who are hard of hearing have obstacles here).

Overall, it was great meeting her. Shannon and I both liked what she had to say as well as her personality. It’s also great that we’ll be able to ask her any questions we might have about the oral school since she’s probably in the best position to answer.

Now for the speech therapist – I obviously had a clearer idea of what she’d be working on, so I wasn’t too worried about how that would go. Our first meeting with her was relatively uneventful. You could tell that she walked into the house assuming that we didn’t really know too much about CIs / hearing aids and their effects on speech. She came armed with a lot of knowledge on CIs, but we actually knew most of it already. It was no problem, of course – she probably got a good feel for what we know already. We’re really looking forward to working with her, of course. Oh – she’s ALSO on the staff of the oral school that we’re hoping Alex will attend. Past that, not way too much to say. Shannon and I both liked her as well. She was a bit more down-to-business, but I appreciate that quality for her gig. All-in-all, that was a pretty uneventful meeting, but those will get more interesting as some time goes on.

So there’s the team, all assembled. I like who we’ve got, and I feel that Alex is going to be in good hands.

A Relatively Quiet Week

There isn’t much going on in the way of news, but I felt like writing something out and keeping momentum. We don’t have any appointments this week! I was telling Shannon that I both like that and feel anxious about it. It’s nice to get a little bit of a break, but I also want to keep things moving. We’ve just about maxed out what we can do at this point, though – the genetics appointment is next week, early intervention is probably tearing through all sorts of paperwork and getting our therapy team lined up, and our ENT doesn’t have much for us until Alex can get his MRI done in March.

Despite the lack of appointments, we’ve been busy working with Alex on the minor issues that the physical therapist identified – neck strength and favoring his right side. Shannon and I have been very diligent on giving Alex plenty of tummy time, which has paid off well. Only a week later and he’s clearly MUCH better at getting his neck up nice and high, even if he’s still a little bit wobbly. We’ve also done a lot of work to encourage Alex to move his head to the left. That typically involves putting him on his side a bit so that gravity helps to push his head to the left (especially when sleeping) and putting him on the floor such that whatever action is occurring (Taylor playing with toys, the TV, mommy / daddy) is to his left. This has also paid off. He may still be favoring his right side, but at the very least it’s less noticeable at this point. Shannon and I hope to keep at it and see how much improvement we can get out of Alex before his PT appointment. Shannon has done some great research on head bobbling, and she’s identified that as an area we’ll still want to work on. According to what she’s seen, most kids’ heads generally stop bobbling by four months, so we only have a few weeks to get Alex to that point. I think that overall, we’re making great progress with working on Alex to address the issues the physical therapist brought up. It’s nice to see results!

A cool thing that I forgot to mention out of the audiology appointment we had last week was that part of the oral school’s “curriculum” includes a music class. I LOVED hearing about that. Shannon and I are both relatively musical people. Our favorite game of all time is probably Rock Band, we both like musicals, and we commonly have music playing in the background when we’re home. Taylor’s also quite the little singer.

Among the many things that hit me hard with Alex’s diagnosis was that he wouldn’t be able to appreciate that as much with us because he’d either be unassisted-deaf or be using cochlear implants (which currently aren’t known for being great with music). To hear that the school does any element of music therapy was wonderful, because it will be catered toward kids like Alex and it implies that, contrary to a lot of older stuff you’ll read on the internet, music isn’t useless noise to some of these kids. I can’t end this paragraph without also mentioning that there’s good stuff coming down the pipe for music comprehension through cochlear implants, too. I’m excited to know that Alex might be able to join his family of music appreciators. Shannon and I both want so much for him to enjoy Christmas music with the family next year.

On the topic of implants, I’ve still been doing a lot of research on implants so that if we’re eligible, we’ll know which direction we want to go and not feel rushed. At this point, I think we’d lean toward the Cochlear Nucleus 6 system. There are lots of good reviews from both adult users as well as parents of kids who use them that indicate that they sound “fuller” than previous models and that they also do wonderfully in noise compared to previous models. They’re also splash-proof! We like what we’re reading about them so far, and it helps that Cochlear owns something like 65% of the market. Technogeek note – they’re also the company who are known to be testing the fully-internal implant that I really, really want Alex to eventually get.

Despite all of the optimism and hope I think I’ve been showing here, it’s still really sad to know that our hopes, at least for the interim, will still involve Alex having a very obvious apparatus on his head. We’ll often read posts from parents on the boards discussing their strategies for dealing with when people ask about what the implants are (with varying degrees of politeness), and it just sucks to know that Alex will have to deal with that for an appreciable amount of time. The term “it’s just not fair” has been used quite a bit in our household. We’re still very grateful that the opportunity to experience sound and speech will be available to Alex, of course, but it sometimes pains me to look down at his perfect little head and know that, in some way, it’s going to be “spoiled.” When Alex gets his hearing aids, I’m sure that those shallow concerns will fade into the background if we know that he’s getting sound, but it’s sad to contemplate in the present.

What else… I think Shannon and I have found that it’s becoming much easier to talk about Alex’s hearing loss in a more matter-of-fact sort of manner without getting emotional about it. We went to a family party and Shannon brought the topic up very smoothly (everyone was probably wondering about it but afraid to ask), and we gave a general update regarding what we were hoping was going to be coming down the road. Being able to do this without getting measurably sad might not sound like much, but it’s a small victory and one that we’ll take.

Last interesting thing of note – Shannon has been visiting Alex at daycare during her lunch hours at work. It works out pretty well because her office is only a few minutes away from Alex’s daycare, it gets her some extra time with him that includes a little bit of physical therapy, and it also shows the good ladies who work there what sort of things we’re working on with Alex. During conversation with the teachers in Alex’s room, one of the teachers revealed that she has a daughter with hearing loss as well. Though hers was not enough to qualify for cochlear implants, she DID say that she has all kinds of experience dealing with hearing aids that have fallen out or are squealing, and so she can certainly help out when Alex gets his as well as be the go-to person for other teachers if Alex has any problems. Since we still haven’t found a nanny yet, that’s significantly comforting! One of our fears with leaving Alex in daycare is that we won’t be able to emphasize enough to the teachers how important it will be to keep his hearing aids / speech processors on or that they won’t know how to do it, so knowing that there’s a pro in the school really helps to alleviate that concern.

I think that about wraps it up for now – happy holidays!

Alex’s First Hearing Aid Fitting

We had our appointment at Buffalo Hearing and Speech this morning. I think that it actually went quite well.

The audiologist (who won’t be our long-term audiologist because she primarily does hearing aids) gave us a quick breakdown of what we were going to be doing, which included talking to the head of the oral school that we want to send Alex to if he’s eligible. Not only was she going to be available to answer our questions, but she was going to be there in person! This was a great kindness on the part of the audiologist as well as the administrator, because it was clearly going above and beyond what was required for that meeting. The second part of the appointment was to get Alex fitted for hearing aids.

The audiologist showed us the hearing aids that Alex would be using (she had some sample models), which was nice. They’re relatively small, certainly compared to the speech processors of the cochlear implants. We were then given the opportunity to pick out colors for the hearing aids. The audiologist made a great point, and that was that the beige color was a bit medicinal / clinical. We agreed and went for a silver color for our little guy.

We asked quite a few questions about what the hearing aids could do for Alex, and the answers we got were pretty uplifting. For hearing loss like Alex’s, the analogy was made that voices to him would sound something like what adults in Charlie Brown cartoons sound like – he will probably be able to make out vowels, but not much more. However, that’s still more than we were expecting, and we were told that it’s probably enough for him to be able to understand things like “mamama.” If he gets that sort of benefit on top of the basic things that we’re longing for (i.e., for him to look at us if we’re saying something loud, to startle, etc), it will really feel like he will have already begun his hearing journey. Hearing about the possibilities of what sort of help Alex can get in the near-term was probably my favorite part of the appointment. Yes, it’s going to be a monster to try to keep them on his head, but compared to him having NOTHING and feeling helpless about it, it’s just not a huge concern.

Anyhow – projections from the audiologist were about four or five weeks to get the hearing aids. That’s longer than what we were told by Early Intervention, but obviously they don’t know all of the nuances of the process. Between that and the benefits we might get out of the hearing aids, I’m not upset or annoyed at all, just excited to get them on Alex.

We then met with the administrator of the oral school, who was a pleasure to speak with. She answered all of our questions and gave us a little bit of background. Bulleted version:

  • We asked what the difference between Auditory Oral (what her school does) and Auditory Verbal (what all of the kids from the cochlear implant board are generally using) was. Her answer was that generally, the AO approach allows natural visual cues whereas the AV approach is more strict. There were a few other differences, but for the most part, they were roughly the same.
  • I asked her about using ASL with Alex – it’s definitely something we all want to learn at some point if not just because his hearing aids / implants won’t always be on, but we will certainly hold off on using it with him if it delays his speech or hearing skills in the early stages. She said that it was definitely up to the parents and that there was no research that indicated anything definite in terms of impeding oral / hearing skills, but she DID say that the school had some experience with kids who came in with ASL and that they would lean on it a bit, so to keep that in mind. The gist I got out of it was that there’s a balance to be considered, which makes sense. If Alex does well with the implants in terms of what they get him with hearing, we will likely not push ASL to maximize the potential he can get out of the oral school, then bring it into the equation later after he’s established. If he doesn’t do as well, we’ll definitely use more ASL.
  • She stated that, accounting for hearing aid and cochlear users, the school saw a ROUGH success rate of 80% with mainstreaming their students over the past six or seven years. She emphasized that that accounted for everyone in the school, including those with additional cognitive delays. I thought that was pretty impressive, and I would guess that with some of the better technology available that has noise reduction and other helpful features, it’s probably a better number as you lean toward recent years.
  • The oral school first gives kids one-on-one speech therapy, then it later becomes group therapy. The reason behind that is that group therapy more closely resembles the noisier environments that kids will encounter in more mainstreamed environments.
  • The school will actually “kick” your child out if it becomes clear that they don’t stand to benefit anymore. Nice to see that that’s actually “a thing” that they have to account for because the kids are too successful, and also nice to know that they’re constantly being evaluated.

Shannon and I were both very appreciative of the administrator actually being there, and it certainly ensured that our introduction to the oral school got off on the right foot. She left us her contact information and invited us to watch the classes at some point – we’ll certainly take her up on that.

The last part of the meeting was the actual fitting. This was a pretty straightforward and simple process. Alex sat on my lap, the audiologist injected some putty into both of his ears (maybe only a centimeter deep, Alex wasn’t too uncomfortable), and we waited for about five minutes for the putty to harden up. She pulled the putty out and showed us what the inside of Alex’s ears looked like. Those molds will be used to anchor the hearing aid speaker in Alex’s ears. We had read a story on the internet of a parent who felt like she was constantly getting new molds because her baby was growing so fast and so the hearing aids would squeal as the “seal” was broken, but our audiologist told us that we’d probably be good for a few months. The newer hearing aids don’t squeal as much as the older ones due to better technology, so they give a little more wiggle room in avoiding the rampant squealing that we had read about. Go technology.

So ended our meeting. We generally liked everything we heard, especially with regard to what was possible with the hearing aids alone, and it was very nice to get that warm introduction to the oral school that we’re hoping will be appropriate for Alex.

I think our next meeting is with genetics – more to come there.