Author: Andy

First Physical Therapy Session

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Alex had his first PT session yesterday. I was A LITTLE nervous about how it was going to go. His PT evaluation really wasn’t that hot; nothing horrendous, but also pretty far from ideal. This was also our first therapy session, the first of what’s sure to be many, so there was that aspect to it as well.

Alex’s therapist arrived a few minutes early, introduced herself, and got right onto the floor with him. I got a very good from her which is obviously important if she’s to be on Alex’s dream-team of therapists and doctors. Very expressive, very nice, very talkative (she narrated everything she was doing, which was helpful for my note taking). Overall, she seemed to be very pleased with where Alex was. She DID notice that Alex prefers to look to his right side, but also stated that he only seemed to do that when he was laying down. Everywhere else and he was good to go.

She ran through a series of little exercises to do with Alex to help push him to his next set of monthly milestones, one of which includes sitting and mastery of rolling over. Throughout every exercise she emphasized the importance of giving Alex the least amount of help possible to keep him stable to coax him to use his own muscles, and instead of PLACING him into spots, to TRANSITION him into spots. Example – for tummy time, instead of picking him up and placing him directly on his belly, it’s much more helpful to use a toy to try to get his attention and direct it to one of his sides, then coax his hip in that direction to try to get him to initiate a roll. It all sounds like pretty obvious stuff, but hearing and seeing the exercises really drove it home. It also helped that Alex was clearly getting tired from the activity, so I knew he was working.

But by far, the best part of the appointment was when the therapist told us that Alex was doing fine developmentally from the PT spectrum of things, and nearly verbatim, “If this was Alex’s evaluation he probably wouldn’t have been recommended for physical therapy.” That was huge. Not only does it represent some sort of win for him, but it’s also a positive sign that he doesn’t have any other physical symptoms that have manifested, at least yet. I also asked about his balance – she said it was fine, he had no issues. Great stuff.

That was about the end of it. She did say that it might be beneficial to increase the therapies from monthly to bi-weekly once development started picking up more, the basis of it being that she can catch things earlier, monitor progress more often, and that there are basically a higher amount of milestones that will start happening. I’m not explaining it here as well as she did, but Shannon and I both agreed that it made sense if we got to that point.

We have an appointment with her for next month and obviously hope that Alex performs as well for that as he did here.

Now to see if we can get his other therapists into the picture…

Some More Random Updates

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I really have to get better at posting these more often. This probably won’t be the last time I open a post this way. The site stats are yelling at me.

At this stage of the game, we’re a little frustrated that Alex doesn’t have his hearing aids yet. We’re not angry at anyone in particular, just the situation. Not only do we want Alex to start having a little more access to sound, but we don’t want to bump up against any of the FDAs requirements that hearing aids be used for x amount of months (we think it’s three, but six is commonly mentioned as well) before he’s able to get implanted (if, IF he’s eligible). Getting him going quickly is hugely important to us because of all of the benefit he might be able to get. I know I’m getting ahead of myself, but I’ve read a lot of stories about kids being age-appropriate with their speech at TWO. Sounds incredible to me, but to have any of his milestones put at potential risk because paperwork isn’t being shuffled around quickly enough is frustrating.

Good progress is still being made, though. An hour from now Alex will have his first physical therapy session. I’ve already mentioned it, but Shannon and I think that he’s gotten MUCH better with the issues that the PT evaluator looked at a month ago – the biggies were neck / head control, and more importantly, a pretty staunch preference to look to his right side. It’s still clear at this point that Alex favors his right, but we still think he’s made some pretty good strides there. When the evaluator first looked at him, he basically refused to look over to his left. Now he can easily do it, but his preference is pretty clear. We’re looking forward to picking up a few more exercises that might help him out in that department.

On the genetics front, Alex’s blood was supposed to be taken last Friday at a Quest. When I got there, though, they explained that they didn’t have the right needles nor was anyone on staff who could do a baby draw. That was particularly frustrating, but I knew it likely wasn’t the fault of the person telling the news. Still, though – I had to schedule it, and I even had to tick a little marker that said “Pediatric Blood Draw” or something similar. Come on. Gonna have to reschedule that one and I’ll be sure to call a day in advance to MAKE SURE that they’re ready this time.

Our service coordinator (she’s sort of the captain / project manager of this whole early intervention gig) has reached out to our teacher for the deaf and speech therapist, but they haven’t given us a ring yet. Looking forward to getting those going, which should hopefully be this week. I’ve spoken with her a few times now and I think we’re going to get along well, which is important.

What else.  Alex had a healthy four month appointment at our pediatrician, which put my mind at ease a bit. Shannon and I are in a pretty constant state of concern that something else is going to pop up, so every little win like this is one we’ll take.

Emotionally, it’s still an up and down thing. My rational side is very upbeat. The new Cochlear N6 implants are getting all sorts of positive notes dropped on the boards here and there, which reinforces my whole perspective that as long as it’s just hearing and as long as he’s eligible, we’ve just gotta get him on the path and his experience will only improve over time. The more emotional side of me still thinks the entire thing is still bullshit, of course. I’ve noticed lately that I’m more sensitive to tragic movies now. I’ll completely admit that I watched “West Side Story” today during the kids’ nap and I was actually bummed for a few minutes after it ended. Ha. Whenever I think about how much this all sucks, though, much of it washes away with a few smiles from Alex. He’s constantly reminding us that he’s still a happy little guy, and that truly helps.

Better wrap this up and finish cleaning for the PT. I’ll give that its own writeup soon.

More Techy Stuff.

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I’ve already said a few times that I’m a big tech-head and that I think it’s going to be very natural for me to spend a lot of time researching the myriad stuff going down the pipe for hearing loss, so if you’re not into that, you won’t dig this. I like talking about all of the possibilities that these developments could represent for Alex, though, since a lot of it is what personally keeps me sane when I think about the stuff Alex won’t be able to experience or the stuff he’ll HAVE to deal with using today’s tools.

CES (Consumer Electronics Show) is a big annual show where all of the gadget companies show off their latest and greatest to drum up hype. It’s gotten large enough that the heavy hitters at the show get coverage from major news outlets. The 2014 convention just wrapped up, and among some nerdy things that I can’t wait to get my hands on, one of the larger themes of the products there was wearable technology, primarily in the form of smart watches (you’ll know all about them when Apple releases theirs). There were a few VR helmets on display and a few Google-Glass like devices too.

There are a few things that I’m really digging up about the push of wearable technology in relation to Alex’s hearing loss and his potential usage of assistive technology.

  1. It signifies a big push and vote of confidence from the companies involved that miniaturization of high-powered devices is at a point where it will be accepted by mainstream customers, and that further miniaturization will continue to be chased down. This will translate to more readily available and powerful hardware that can be used in the assistive devices Alex might be able to take advantage of. If we’re specifically talking about cochlear implants, that’s going to mean smaller BTE (Behind The Ear) pieces, and later on, components that are small enough to be completely implanted while still being very powerful. The same idea would apply to microphones.
  2. Wearable technology might make body-networking more popular, which will lead to improvements. Body networking is basically a wireless network that uses your body as a physical medium instead of cables. It’s superior to wireless networking because it’s more secure (someone has to be touching you in order to be on your network) while carrying a more reliable signal than wireless (not as prown to interference). This could potentially lead to doing away with the conspicuous wire and magnet that connect cochlear implants to the BTE speech processor (my biggest qualm with the appearance of the tech).
  3. The proliferation of body-worn tech might get to the point where it’s very common place, making cochlear implants less socially strange at a general level. This one isn’t way too important to me, but I’ve read some sad-ish stories of parents who can see people staring at their children or dealing with rude questions. I’m thinking that miniaturization will play a much larger role in allowing users of CIs or powerful hearing aids to not get strange looks because of their hardware, but it’s something.
  4. Better, smaller batteries OR body-powered devices. Cell phones have driven compact battery performance through the roof over the past ten years, especially since the iPhone popularized the “your whole phone is a touchscreen” trend. It’s funny to think about now, but I remember reading all of the skepticism on gadget forums about how the iPhone would be a certain flop because its battery performance MUST be garbage, and that was only seven years ago. With wearable tech, development of technology that can charge off of a person’s body (through heat, kinetic energy, etc) becomes a more desireable feature. Obviously for hearing tech, this equates to smaller devices with smaller, longer-lasting, or even non-existent batteries.

I’m excited to see this stuff start to take off. It’s clearly in its infancy right now, but the qualities of these devices are pretty similar with those of assistive hearing technologies. The more brainpower involved in these areas, the better for Alex.

So there’s CES, and that’s why I’m now particularly excited that devices like smart watches and fitness trackers and Google Glass are gaining momentum.

I have a few other things I’ve dug up about assistive tech, but I feel like I just wrote a boring enough wall of text above and I’d better stop here.

The Holidays

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With the sudden slowdown of appointments, I haven’t had all that much to post about. Shannon and I are both in the midst of the blur and continue to make tweaks to our schedules to make life a little more sane. We’ve renewed our search for a nanny to watch the kids at our home for two days a week so that they’re only in daycare for two (this sounds especially nice as I write this, given the storm Buffalo just received). We’ve also just hired a cleaning service to come out to the house once a month and give us a little bit of time back while keeping the place in sane condition. I feel like we’ve made it through the first big wave of appointments and are now in a slight holding pattern as early intervention gets therapists line up and we wait for Alex’s hearing aids to be sent over (“dispensed”).

So, a quick note on the past few weeks. The holidays were generally nice, as I thought they’d be. I fell into a little bit of a depression again just before Christmas, but that was more of a minor funk than anything. Strangely, I think a lot of that was spurred on by the fact that we were in the midst of my favorite time of the year, but that I couldn’t enjoy it as much as usual with Alex’s deafness racing through my head constantly. Shannon and I had a few of those family moments where we’d say “Imagine how perfect this would be if he were completely healthy” and the like. Our state of mind was still a huge improvement over the big depressions that hit us after the diagnosis, but that feeling is always with us, even in diminishing forms. I’ve been fine since then, though.

That said – the holidays were also a good morale boost. Being surrounded by family re-affirmed the great environment that Alex is going to be brought up in and the support that he already has. We got the chance to hang out with some of our good friends who also kept our spirits pretty high. It’s nice to talk about how our kids are going to play together and the like. It’s one of those small things that supports the idea that Alex, although not completely perfect as far as health / issues goes, can have a completely normal life with the right support.

Shannon and I have said a few times while looking at the kids that it’s going to be really interesting to see what next year looks like. I’m really excited about the prospect, even though I was loving those moments as they were happening as well. We’re really hoping Alex will have his ears and we’ll be opening the hearing world up to him. A lot can happen in a year!

First Genetics Appointment

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First post in quite a while – it was a busy holiday. I’ll probably tackle some of my  thoughts / feelings during that period at some point soon, but we just got back from the genetics appointment so I thought I’d write about that now while it’s fresh.

The first thing that comes to mind is a blurb from our last audiology meeting that I don’t think I wrote out here. We were speaking with the audiologist and the director of the oral school and getting them caught up with what other people we had talked to and where Alex was with regard to all of his other appointments. When we told them that one of the next things coming up was a genetic test, they were both somewhat surprised – apparently it’s pretty rare that their kids’ parents have that testing done, which in turn surprised me. I certainly understand the whole “ignorance is bliss” approach, but don’t you still do it so that you can get in front of anything else that might be coming, or even better, that you could get some verification that nothing else WOULD be coming?

Anyhow – the director cited a pretty wild figure, something to the tune that she only knows of three or four kids who went through her program who had the testing done, so they’ll be interested to hear how the experience goes for us. We’ll certainly share that information with them.

The appointment itself was pretty standard stuff. Nurse comes and gets us, takes Alex’s height, weight, and head measurements. Another person (I’m not sure what her title was) then came in and asked us to reiterate what was going on with Alex at a high level to make sure that it jived with the notes that she already had. Shannon did so. She then went through the following questions for both Shannon and I:

  • How old are you?
  • Do you have any medical concerns?
  • Do you have siblings? Do they have any medical concerns? What’s their age?
  • Do you have living parents? Do they have any medical concerns? What’s their age?

Obviously she was looking to see if there was an obvious genetic history to trace Alex’s issue to. She went over dominant and recessive genes quickly and explained to us that there could be multiple steps in the analysis. The first thing they want to look for is Connexin 26. This gene accounts for half of all cases of genetic deafness. The “good” thing about this gene is that deafness is basically the only issue associated with it, so if we happen to fall into that category, we’ll get some verification that Alex’s deafness isn’t symptomatic of something larger.

Our next step is to have Alex get a blood draw from Quest Diagnostics. From there, a lab will test specifically for Connexin 26, and we’ll go from there. If the test comes back negative, another test will be done to look for other common genetic issues that have deafness as a symptom. It’s still quite possible that Alex’s deafness isn’t genetic, and if that’s the case, we’ll just get a bunch of negative tests.

A doctor was supposed to see us next, but it turned out that she had gotten caught up in the brutal weather we’ve had today in Buffalo and wouldn’t be in until later. That was somewhat of a downer since we were told that a lot of her training involves being able to visually detect issues, and it would’ve been nice to hear that he didn’t have anything visible going on. That said, Shannon and I have both stared at Alex plenty and haven’t really seen anything that would raise any flags, so we didn’t walk out of the office with our heads low.

I had to tell Shannon while we were waiting that I hated that we had to be doing any of this. Even though we’re busy and we’re ready to get to work and we know that the outlook could really be positive, just having to make Alex (and in this morning’s case, Taylor) go to these was a little sad, even though they both didn’t seem to mind one bit.

Next steps: Get Alex’s blood drawn, wait a few weeks for results to come back (they are ONLY testing for Connexin 26), and draw a plan of attack based on those results. We were told that we probably won’t have to come back into the office any time soon even if more testing is ordered, which is nice. Anything that helps to keep the appointments to a sane level is good.

Anyhow, a pretty straightforward appointment, but I thought I’d write it all out for anyone who’s interested in what one of these looks like.

A Relatively Quiet Week

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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!

State of the Union – Two Months In

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I thought it might be a good idea to trace progress every month or so and sort of sum things up from a high level.

Two months ago we learned that Alex had SOME type of hearing loss.  Even though we were given indications that it might only be mild / moderate (which is safely within the realm of just needing small hearing aids), we were still heartbroken because it meant that Alex would have to use some type of assistive technology. It absolutely sent us into a depression that I think any loving parent would experience if they were told that their child would have special needs or have difficulty doing certain things that other children wouldn’t experience. It was incredibly tough to swallow, but we were encouraged with what hearing aids could do, how small they were, etc.

A month ago we learned the extent of that loss, which actually turned out to be severe / profound. Alex was deaf. I’m not sure if the level of depression this new info sent us into was as bad as hearing about the initial loss, but it was certainly awful. That’s when I started the blog, because I felt that some sort of outlet might be a little bit therapeutic and to also perhaps give back to the folks who had written things on the internet that made us feel better in some way, be it from their encouraging results or just to reinforce that we weren’t alone and that life would go on.

I logged into my blogging dashboard today to look at articles that I had begun but never finished, all of them from the first week or two that I started writing. One of them was a list of things that triggered depressive attacks and another one for triggers that made me feel angry. A lot of dark things were written there that make me wince now. I didn’t delete them yet because I think they’re still of interest because it was what I was genuinely feeling at the time, but I’m not sure what to do with them at the moment either.

Anyhow – I bring that up because it might provide a better picture of where I was a month ago vs. where I am today. I think Shannon parallels me here because we obviously talk about it a lot and generally share the same feelings about it, but I don’t want to speak too much for her.

So today, I think we’re generally doing much better. One of the many things that I was both angry and guilty about was that the grief I was feeling was keeping me from enjoying my kids. I can happily report that that really isn’t the case anymore. We still have our sad days, but we’re slowly… slowly… inching ourselves back up to something that feels almost normal. It’s tough to know what “normal” really is anymore, but I think that has more to do with the fact that we’re still acclimating to having two kids vs. having a child with a disability.

We can watch TV shows where the topic of hearing comes up without it making us so sad that we have to turn it off. We can watch Taylor play with toys and not instantly become sad when they play sound. We can listen to Christmas music without being absorbed by the fact that Alex can’t hear it. Shannon and I went to see a movie and it felt like a fun day date rather than a thinly-veiled attempt at feeling normal. I can listen to Taylor babble on and on and only smile and laugh at it instead of being consumed with the thought that Alex will never be able to do that.

I feel that we’ve made a lot of good progress in getting Alex the help he needs to start overcoming the limitations inherent with deafness, so the feeling of floating aimlessly in the ether has somewhat subsided. The Facebook group that we joined that’s based around parents of kids with cochlear implants has been a fantastic resource and a potential glimpse at what we MAY be dealing with. The experiences there are very real, and very encouraging. All of the specialists whom we’ve met with recently have generally been great people who we feel are ready to go to bat for our son. We’re close to to getting Alex hearing aids which we hope he’ll benefit from. We’re watching Alex’s physical development and seeing great gains in just the past week, where we’ve been emphasizing neck strength, tummy time, etc. There’s progress being made, and maybe even a sense that we’re building momentum.

I have high hopes for Alex’s future that are starting to become high confidences. All techno-hype aside, I’m genuinely feeling that the strong support system that he already has with his family is becoming stronger with the early intervention / therapy / audiologists that are being brought in. It brings genuine comfort to the situation. I’ve also tried to focus on all of the ways that our family is already blessed and that Alex’s condition is just a challenge that’s going to built both his character as well as our own, which takes some of the sting out of the feeling of victimization that we’ve felt for the past two months.

There are still mountains to climb. The genetic testing that’s coming up is scaring me for fear that Alex has more challenges coming that we don’t know about yet. Our hopes are clearly on the cochlear / oral route to the point where it’ll be a major disappointment if Alex isn’t eligible. From what we’ve seen / read / heard, though, not being eligible is pretty rare, and I feel at this point that I owe it to my family to be strong, and allowing myself to have that hope is the best way to enable that.

With a little bit of luck, we’ve seen the worst of it and will be trending upward. Our little boy is going to kick some ass, and we’re going to kick ass to make sure he gets the opportunity.

Alex’s First Hearing Aid Fitting

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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.

The Early Intervention Evaluation / Plan Development Session

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Last Friday was our first “big” meeting with the Early Intervention folks, so I wanted to outline how that went.

Three kind ladies came over; one was the EI coordinator that I had met with the week prior, one was a physical therapist, and one was a speech therapist. They introduced themselves, shook hands, took shoes off, yadda yadda. Very polite and kind, which I only bring up because this was a somewhat unnerving meeting for us. It’s easy to just write out what was happening and leave it to a series of events, but underneath everything there’s that feeling of “Wow, my kid is really in Early Intervention.” It was nice that the introduction to all of this was in OUR house and with non-clinical… humans. I felt that they were very considerate of the situation.

After the introductions, we basically got right to playtime with Alex. The ladies watched how he moved, cooed, reacted to us, etc. He was very well-behaved and even put on a bit of a show. After about twenty minutes of observation, the physical therapist made note that Alex was heavily favoring his right side, especially when laying on his back. She said that this wasn’t a MAJOR concern, but was still somewhat of a concern that we’d want to work on. She showed us a few exercises that we could perform and also emphasized that we’d want to give Alex a little more tummy time. None of that came as too much of a surprise. Shannon’s very perceptive and had noticed that Alex favors his side, and her equally perceptive mother had noted the same thing. As far as neck strength, we were admittedly much better with ensuring that Taylor had plenty of tummy time when she was a baby. I think a downstream effect of the gutpunch we received with Alex’s hearing loss was that some of those things fell more into the background. The physical therapist rated Alex as being somewhat behind where he should be at his age, but not by much.

The speech therapist noted numerous times that Alex was doing wonderfully with his cooing and eye contact. Hearing about his little speech was another both-good-and-bad moment. Great, he can coo, but he can’t hear himself and he’s going to stop eventually. The positive outweighed the negative, though, and we were thrilled when the speech therapist put his cognitive and speech skills ahead of Alex’s age. At least we have a little buffer! It was also nice to hear it validated that his eye contact was solid.

The next step of the meeting was to develop the plan. It was emphasized that we would be able to make any changes or tweaks as we go along and as we learn more about what’s going on with Alex, so we didn’t have to worry at all about oral vs. total communication or anything like that. That kept things pretty basic.

The output of that plan:

  • Alex will have a physical therapist that will check up on him once a month to see how he’s doing with his neck strength and to ensure that his right-side-favoring doesn’t become a real issue. Again, the PT wasn’t extremely concerned, but she did say it’s something that we should keep an eye on before his muscles get too used to the imbalance and it becomes more difficult to fix. Shannon and I actually like the idea that he’s going to get that individualized attention and have yet another set of eyes watching him for anything that might come up.
  • Alex will go through Buffalo Hearing and Speech for his audiological needs (hearing aids, etc). No surprise there.
  • Alex will have a speech therapist – I’m interested and excited to see what comes out of this at this young of an age.
  • Alex will have a teacher of the deaf. I asked what this person would be doing because I honestly didn’t know, and we were told that, for example, this person can make recommendations on what kind of toys we can get for Alex that are visual, how we can organize things for him, etc. I’m also really looking forward to working with this person and picking their brain.

We’ll have four appointments a month, and they’ll all be tentatively targeted to happen between 1:00 and 3:00 on Fridays at our house (which is huge!). That’s when Taylor naps and when Shannon’s mom is watching the kids, and it’s also one of the easier times for me to work from home or take PTO. I plan on being at as many of the appointments as I possibly can be. I really like the idea of Shannon’s mom being so involved because she’s a huge part of our kids’ lives. She’s already expressed how excited she is and she’ll take copious notes. Her readiness to do everything she can for Alex comes as no surprise.

That basically wraps it up. It was a whirlwind of activity that lasted for about an hour and twenty minutes, but I felt like Shannon and I soaked a lot of really good information up. We’ve DEFINITELY stepped up our game with the concerns that the PT brought up, and it feels good to be working on something with him / for him. I think we’ve already seen some progress; we’ll definitely keep it up.

My attitude toward Early Intervention is becoming increasingly grateful – I LIKE that Alex has all of these people who are going to be watching out for him and helping us know how to best steer him along the way. It’s like he has a team dedicated to helping him kick ass even above and beyond his hearing loss.

Next up – we have an appointment at Buffalo Hearing and Speech this week that I mentioned a few posts ago. We’re hoping Alex gets fitted for hearing aids and that we learn a bit more about the oral and total communication tracks that are offered. This Friday we’re supposed to have a follow-up meeting with the NICU Alex stayed at to follow up, but we’re hoping we can get out of it on the basis that we’re already in Early Intervention and getting evaluated, so there seems to be little point in wasting time by re-iterating that all is not honky dory. If we have to go to the meeting, however, we’re hoping to line up an appointment with the Genetics department there to get that moving along while we’re there. The hospital isn’t exactly next door to us and Shannon and I are trying to streamline these meetings wherever possible for the sake of our bosses’ sanity.

In other news, Alex continues to become an awesome kid. He’s very smiley and is starting to laugh a little more consistently, and he’s generally pretty easy going. He loves his family. I’m getting less sad about looking at him during these moments and getting my chin up higher as time goes on. It’s nice to see some of the initial pieces coming into place.

On the Topic of ASL

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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.