Some more random tidbits

A lot has happened lately, so this is probably a good time to write about some of the stuff that’s fallen between the cracks.

Alex is still moving along at a good clip with his physical development. We were worried that he was developing a flat head, but he’s been doing much better with sitting up with a little bit of help and we almost never have him flat against the floor anymore. None of that would really be an actual health concern anyhow unless it got REALLY bad, but it’s still a mini-win for us that the flat spot is going away.

Speaking of physical therapy, Alex had another PT appointment last night. Not way too much to say there – he’s still on track for his age, and it was reiterated to us again that if Alex was to be evaluated today, he likely wouldn’t be a candidate for PT services. We still have a list of things to work on to help ensure that he hits his milestones for next months, but there’s nothing we really have to get him caught up on. The only thing that the therapist noted was that he still has a little bit of a side preference when it comes to leaning his head, so she encouraged us to hold Alex on his side so that the opposite side of his head is propped up a little bit higher to stretch that neck muscle a bit. No big deal, though.

His eye contact is fantastic. One of his favorite games to play is to stare up at one of us. When we make eye contact back (especially if we make a silly face at him), it’s almost a guaranteed smile. Eye contact is a good sign that he doesn’t have some other issues that we’re obviously hoping to avoid. Our speech therapist even noted that his eye contact is great and that he reacts very well to his environment. Great, and reassuring that we haven’t seen any signs of anything else coming.

We still haven’t gotten the results of Alex’s genetics testing. That should be coming this week. It’s very likely we won’t learn anything from it at all, except for what it possibly isn’t. Because of that, it’s nice to have our therapists telling us that they aren’t seeing anything else going on, at least yet. It makes me nervous to think about. I have a bad feeling we’ll get back some sort of result that’s full of “this MIGHT happen, and this MIGHT happen…” sort of stuff that will just make us worry. But as Shannon often tells me, it’s important that we stay in front of as much as we can, and she’s right.

On the techy front, I’ve been excited about a recent MIT development that’s resulted in a CI proof of concept that’s completely internal. It’s a pretty slick design – the microphone resides in the middle ear, which effectively means that the acoustics of the users ears come into play, which is a little more natural. Obviously the coolest things about this design are really the invisible equipment and not having to worry about any of the downsides of that equipment. I think the big downsides to it would be that it would require a surgery to upgrade the hardware, though. Their design still uses an electrode to stimulate the cochlea instead of something like infrared (tens of channels of sound vs. HUNDREDS). That tech is a ways off, though, but the fact that they have a newer internal implant is awesome. I’m hoping that the model that we see for the internal implants involves a processor that’s still external, but much smaller than current processors (something like this, but preferably even smaller). Cochlear has an internal CI that’s been in testing for the better part of ten years now, and actually has two modes of operation – one that works completely using internal components, and one that works in conjunction with external processors. The former is the better sound, but the idea is that it isn’t required to be able to hear anything. I think that’s a great model to allow for upgrades as we go along without requiring surgery. A happy medium will be found.

Outside of that wall of techno-babble, I’m really thrilled that so much work is going into bringing such amazing advances that Alex and others will hopefully be able to use. Just thinking about him not having to worry about batteries or swimming or roller coasters or worrying about getting double takes makes me smile.

I recently asked our CI board about if and when they introduced ASL to their children. There was definitely some spirited dialogue generated from it, because it’s such a huge part of the strategy a lot of these parents used for coping with their child’s deafness. The thread is up to about 50 responses right now, and they’re all great in that everyone’s story was basically one of success, and they were just sharing their particular recipes. A lot of really interesting points were made both for and against teaching ASL prior to and during speech therapy. The one I found most convincing was that some children found it easier to use spoken language because they were already familiar with the concept of the words that they had learned from ASL. No one stated that ASL got in the way, but obviously it’s still a small-ish sample size. On the other side of the coin, there were many parents who posted that their children were oral-only and that their kids had no interest with learning sign language after their therapy. Cool to see that level of confidence placed in hearing / oral skills as the sole means of communication (minus writing and finger-pointing, of course!).

I think what I got out of the discussion is that there isn’t a clear-cut right or wrong answer, but it looks like ASL wouldn’t really get in the way of verbal development. I don’t think our current strategy of introducing ASL during or after Alex’s therapy is really going to change, but now I think the reasoning for that is going to be more about not inundating the guy with therapy and new things to learn instead of ASL impeding his verbal skills.  It’s still a tool that I still want him to have, though.

I think that about covers it! It’s been a busy week and we’re still figuring out Alex’s hearing aids, but I’m happy with the progress that we’re making.

I was telling Shannon that I have this future image of my head of having some of Alex’s buddies from his oral school come over to watch a movie in our home theater that we’re going to eventually put together (closed captioning, of course!), spoiling them with pizza and pop, and generally running around like the normal kids they truly were. Their parents could be upstairs with us exchanging our war stories of our respective journeys, how much we worried, how much work it all was. It’s a simple little scenario, but it gives me a lot of hope that everything will end up alright and that we’re just in a really tough stretch right now, just gotta keep plugging away.

Advertisements

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.

On the Topic of ASL

I was going to write about how yesterday’s Early Intervention meeting went, but that can wait for another day or two.

A commenter named Suzanna left a thoughtful message on my last big update and as I was thinking about I was going to respond to it, it seemed that the content of that response might be worth its own post because it’s a big piece of our early strategy and goals for Alex, so here goes.

Our overriding objective for Alex is to give him every opportunity in life possible. To us, that includes doing everything we can to help Alex overcome his disability. Yes, we look at his deafness as a disability. We live in a hearing world and there are obvious detriments to living in that world without the ability to hear. We worry about him not being able to hear danger closing in. We worry about him not being able to communicate with hearing people as easily as possible. We worry about him being at a statistical disadvantage when looking for employment (even though 20 years from now this might not be an issue). We want him to be able to appreciate music. To us, each of those things represents opportunities that, at the very least, become more difficult as a person who can’t hear. That isn’t to say that the deaf community should be pitied or that they need to be fixed. But at the end of the day, if modern technology / therapy gives us the ability to grant Alex any opportunity to hear, we’re going to take it for him, not because we want him to be “normal” and without regard to contributing to perceived ethnocide (yes, it gets that intense). With his level of hearing loss, this basically means very powerful hearing aids that would have limited functionality, cochlear implants, or auditory brainstem implants. I’ve written this before, but if I’m fixating on technology and implants, it’s because those basically represent what Shannon and I think are the best gateway to opening those opportunities up for Alex.

We’ve spent hours upon hours researching from many different angles. Our research has shown us how successful kids can be with these implants, the relatively low dangers associated with what’s an outpatient and NON-BRAIN surgical procedures, and we know what the many challenges and limitations are going to be. Most importantly, a very well-known aspect of developing a brain geared toward using hearing is that that hearing must be present and exercised within the first three years of a child’s life – the earlier, the better.  Knowing that, we are absolutely of the “TIME IS OF THE ESSENCE!” mentality.

So – this post is about ASL, but I wanted to give that above background to explain why we’re not going on about ASL quite as much. Primarily, it’s because ASL isn’t much of a variable for us. We plan on using it with Alex and learning ourselves.  To what extent is dependent on Alex’s needs and his therapy. Our objective for Alex at this point is to have him use speech primarily IF it’s possible (i.e., he takes to the implants well and therapy results are obvious). There are various schools of thought regarding the usage of ASL if attempting to teach speech as the primary mechanism of communication. One side believes that it hinders speech, the other doesn’t. I haven’t found anything decisive, but I do know this – in the sunniest of scenarios, if Alex gets his implants and does well with them, they still won’t be on all the time, and it’s unacceptable to us that he’ll simply be out of luck during those points. If nothing else, we (and the family) are going to make sure we know some of the basic signs. I’d like us all to know as much as possible without hindering Alex’s speech / hearing development, however.

So if I don’t talk about ASL that much, it’s for a few reasons.

  1. Barring Alex’s eligibility for cochlear implants, it’s simply not our first choice for Alex’s primary means of communication.
  2. We’re planning on learning ASL regardless, though only to the extent that it doesn’t interfere with his speech development. We’re still learning about how that works, but unbiased literature on this is relatively sparse
  3. I’m a technogeek and am still amazed at what these implants are accomplishing in the real world, and my true belief is that if Alex does well with the implants NOW, when it’s key, then his disability will present less and less barriers to opportunities as the technology improves. He only needs to get his foot into the door now and enjoy the advances (obviously assuming he wants to!).
  4. If it becomes evident that Alex isn’t doing as well with the implants or can’t get them in the first place, we will immediately switch to ASL. It is absolutely NOT off the table or something we’re trying to avoid.
  5. The chance that Alex won’t be able to take advantage of ASL is far lower than the chance that he won’t be able to go the oral route, so that’s more of a concern that’s on our minds.

A little story: one of the first things Shannon and I did when we learned of Alex’s hearing loss was to discuss how important it was to us that the family be able to communicate with one another and to jump on that early, so we added a few signs to our repertoire (Taylor learned some signs at daycare, so we already knew a few).  They included “dad,” “mom,” “sister,” “brother,” “please,” “more,” “food,” and “enough.” Though we’ve admittedly slipped on this in the past few weeks, we have been showing those signs to Alex where appropriate and working on them with Taylor (“Can you say ‘please’ with your hands, Taylor?”).

Honestly, as I write this, I’m excited to learn ASL. I love learning new stuff, and deafness will always be a part of my son’s life, even if the medical suddenly developed a shot to give him his biological hearing back next week. Though I don’t want him to be limited to only ASL when the vast majority of us don’t use it and don’t value it enough to get in the way of getting him his best chance of access to speech, I still want him to have that link, and I want us to have it, too.

Some Clarification

I’ve gotten a few notes from my past few posts, and just wanted to take a stab at clearing the air quickly.

At this point, what I’m writing is very emotionally charged.  I know that I’m saying dark things, but the reason I’m doing this is to document the journey I’m on and being real about it.  I mean no offense to anyone involved in the Deaf community, and I understand their perspective that there’s nothing wrong with them that needs to be fixed, they’re just different.  I find that perspective to be very reassuring.  I apologize to anyone who takes offense at my visceral reactions to what’s going on with Alex and would hope that they would understand that all rationale is generally out the door when you’re talking about your children, but again – my goal is to document the journey, and that will almost certainly involve change.  I want it all here as an honest representation of that journey.  I initially thought I would write just a private journal, but decided to publish it in the hopes that, along the way, it might help someone else in some capacity or let our friends and family know what’s going on and how we’re doing.

On another note, if I seem gung-ho on cochlear implants at this point, it’s because they represent the ability for myself and Shannon, as parents, to give our child all that we can.  We know that it might not work.  We know that if it does, it’s not a “cure” for his hearing loss.   We’re not squarely on that path yet.  Alex’s viability as well as the testing that can be performed to see how well he might take to them will absolutely be major considerations, and we’ve been very happy with what we’ve heard about the Total Communication / ASL Early Intervention route as well.  Our happiness or love for our child doesn’t hinge on him getting cochlear implants, just as we know that his love for life and identity aren’t dependent on them (or any other medical device) either.

I hope this gives some clarification on where I’m coming from.  So far, the story has been written in a pretty bleak way, but that’s because this is all still very fresh for me.  Believe me when I say that Shannon and I have had many conversations about how we can’t wait to look back on this period and roll our eyes at ourselves for worrying so much about our beautiful son.