Introduction, Part Two

I’ve struggled a bit to figure out how to keep this from just becoming a babbling stream of consciousness for the sake of keeping things organized and helpful.  I literally have four other posts that I’ve started and not finished for various reasons; regardless, it’s probably best to keep catching up with Alex’s story.

Where we last left off, Shannon and I had found out that Alex had some degree of hearing loss.  We had no idea what the extent of it was at this point.  When we got home, we immediately took to Google and started investigating hearing aids and feeling awful.  Some hearing loss might not sound bad, but understand – our child would now depend on hearing aids for the rest of his life.  And if you know anything about hearing aids, then you know that they’re far from perfect.  Unfortunately, hearing issues can’t be boiled down to “just amplify it!”  It doesn’t work that way.  They contain speech processors, noise reducers, different programs for different sound environments, etc.  Basically – Alex’s hearing would not be able to fixed or brought back up to 100%, at least using today’s hearing aids.  Everything from here out would be a compromise for our boy.

Then, of course, there’s the visual.  He would always be wearing these.  As a guy, he doesn’t have the same benefit as most ladies do in terms of being able to grow his hair out.  Well, of course he COULD, but let’s be real.  Only a select few guys can do that.  Dark thought – he would never be able to approach a girl at a bar and stand on the same footing as another guy who doesn’t have hearing aids.  There’s nothing cruel about that in itself; we’re biologically wired to look for attractive partners who don’t have any potential issues that could be passed to their children.  But as a parent?  It’s a fucked up thought to have.  And I knew it was a fucked up thought to have, so I felt guilty about it.  The dark thought -> guilt -> depression cycle has been a common theme through much of this.

We felt terrible, had trouble sleeping, felt victimized.  It might have been the day after we took the test that we decided to immediately get moving as quickly as possible and call up an ENT specialist.  I’ve worked in the healthcare system.  I know how inefficient and slow it is.  We also scheduled a follow-up ABR with the hospital to get a better diagnosis of what sort of loss we were actually dealing with.  The closest we could get was something like three weeks away.

And just a quick note on those three weeks.  Three weeks is a very.  Long.  Time.  Especially when you’re talking about something as emotionally charged about this.  It’s three weeks of pure uncertainty.  Gives the mind plenty of time to conjure up stressful visions.

Getting back on track – shortly after the initial news, we hosted Halloween at our house with my parents, some of my friends, and Shannon’s family.  I asked my dad (who wears hearing aids) many questions, to which he had many rationally reassuring things to say.  I qualify that with “rationally” because at this stage of grief, nothing rational really helps.  At the end of the day, it’s still a compromise regarding something you would NEVER, EVER, want to do so on – the welfare of your kids.  Speaking with my dad, though, was very helpful.  He’s someone who’s living in the world of less-than-perfect hearing, so to hear his perspective was real, and hopeful.  Much was said about how far the technology has come along since he started wearing hearing aids.

After many tears and heartaches, Shannon and I came to a base form of acceptance regarding Alex’s hearing loss.  Hearing aids wouldn’t be too bad.  There’s some pretty crazy stuff out there for hearing aids, including aids that fit directly into the ear canal.  No one would have to see them down the road, so Alex wouldn’t have to deal with any sort of obvious social stigma from looking slightly different.

Just as long as it isn’t something like, oh, say, cochlear implants… we’ll be alright.

Shortly after Halloween, we had our appointment with the ENT.  Nice building, but the guy sucked.  He wouldn’t look us in the eye.  He didn’t introduce himself when he walked in.  He talked over my questions (Shannon later told me that she knew that I was getting increasingly angry).  He spent much of our time together talking about late night hearing aid infomercials.  Worst of all, though, is that he thought we had come to him a little bit too early, and that typically they don’t engage until the patient is about six months old.  Nope.  Everything we had read up to this point was that getting your baby as much hearing help as possible, as early as possible, is paramount.  As if that didn’t seal the deal that this was going to be a one-appointment thing, his detached manner really drove it home.  It’s amazing to me that someone can get their doctorate and have such a shitty bedside manner.  I didn’t need the guy to give me some hugely compassionate speech or anything and I get that not all doctors are psychiatrists, but this guy was just completely disinterested.  We weren’t there to talk about subjects that interested his whim, we were there to do the best thing that we could for OUR CHILD, which most parents would probably agree is probably the most important part of their lives.  Before we had left the room I was relatively certain that Shannon and I had already telepathically agreed to never see this guy again.

There were two good things that came out of this appointment, however.  One – he looked at the results of the wonky ABR we had taken and made some mention of how it looked like it was mild-moderate or something to that tune.  For those who haven’t done eighty hours of research on this, mild-moderate is basically “get some hearing aids to help you hear optimally, but you’ll be fine” territory.  That was reassuring.  The other positive was that he recommended that we arrange an appointment with Buffalo Hearing and Speech, who have the best equipment, etc.  On our way out of the office the helpful secretary got us an appointment with them that fell before our follow-up ABR with the hospital, so speeding that along was appreciated.

The time leading up to that next ABR was relatively peaceful.  Shannon and I still discussed Alex’s hearing loss at length, but at this point we had a doctor implying that this didn’t look like any major sort of loss.  A hugely important calming factor that was introduced here was Shannon’s best friend.  She wears hearing aids, but you truly wouldn’t know it.  It hasn’t slowed her down at all in terms of being social, intelligent, or generally awesome.  She’s been instrumental in bringing Shannon and I up from the dregs of depression, and for that I’ll always be very grateful to her.

The morning of the next ABR with Buffalo Hearing and Speech arrived.  I treated it as any other morning, so I got changed into my work clothes so I could head out afterward.  I would say that we were nervous, but shaking in our boots, encouraged by the “mild-moderate” bit from the doctor as well as the fact that we still thought that Alex was reacting to some sounds.  Shannon said that she was hoping for just that mild-moderate loss.  I thought I would be more conservative and go with expecting moderate-severe (which is at the upper end of hearing aids getting the job done well).  Something that sticks out to me now as I write this is that as we pulled up to the building and turned the car off, I had this feeling that the next time I’d walk out of the building in front of me, my life would be completely changed.

We had a wonderful and compassionate audiologist who performed the ABR.  She explained what she was about to test.  Shannon and I explained that we felt that Alex had some hearing loss at this point just so she knew she probably wouldn’t be dropping any bombs on us, we went through the family history question (we have none), and then we got started.  I held Alex this time around to take some of the load off of Shannon.  Alex was VERY sleepy at this point, so we were sure we’d get solid test results back this time.  To setup an ABR, a small tube is inserted into the ear, which is basically the speaker.  It goes into the ear rather deeply.  Electrodes are then placed at various spots of the head to measure brainwave activity.  The idea is that if you can correlate the sound coming out of the speaker to the brainwaves, you know that the person is hearing it.  Again, everything seemed to start off fine, and stayed that way for about twenty minutes.  By “fine,” I mean the audiologist wasn’t really making any notes or saying anything was up.  I couldn’t see the results of her testing from where I was sitting, though.  After those twenty minutes, though, I could hear one of the sounds that was being played into Alex’s ear.  And he didn’t move.  My stomach dropped.  Again, these tubes were placed relatively far in his ear… and I could hear what they were trying to get him to react to.  He slept like it was nothing.  I held on to some hope, though.  Maybe the speaker was firing backward and out of his ear for some strange test.  Maybe it wasn’t abnormal to be able to hear that.  Maybe his brain registered it even though I didn’t feel him move.

At some point Shannon stepped out of the room to call my dad, who was mercifully watching Taylor while we were at the test.  During that window, the audiologist wanted to test the other ear.  I asked her how everything looked.  She very gently, but directly, stated that we were in the profound hearing loss territory.  Or in layman’s terms – he’s straight-up deaf in that ear.  I went back to the feeling of grief when we first learned that Alex had hearing loss.  It wasn’t quite as shocking this time, but that was probably because we had immersed ourselves in the world of hearing loss, so this sort of diagnosis was more like a worst-case scenario vs. what had initially felt like an impossibility.  When Shannon walked back into the room, I told her, because I felt she deserved to know it immediately.  The look on her face made it apparent she was immediately back to grieving as well.

Testing on the other ear was indeterminate because Alex woke up and started wiggling.  At that point, it didn’t seem to matter, though.  We had gone from light hearing loss to DEAF.  We did learn that his hearing loss in the other ear wasn’t quite as awful, but it was still very bad.  No consolation there.  I asked the audiologist “So we’re now in cochlear implant territory, aren’t we?”  She sullenly nodded.  During the next twenty minutes, we were introduced to what was going to be our world.  Early intervention.  Special schooling.  Therapies.  Appointments.  Mercifully, the audiologist who we were dealing with was very sweet.  She told us many encouraging things, including that most of the kids that went through the program were successfully mainstreamed.  That was important, as it helped to frame early intervention as a lot of up-front work to help your child go through life otherwise “normally” afterward.

Of course, none of that helped the complete defeat that we felt again.  I called in sick to work because there was no way I would’ve been able to cope with it at that point.  More tears and mourning.  The most evil part of depression, in my mind, is that when you’re experiencing it, it truly feels like it is never going to end.  Welcome to your new existence.

Still not completely caught up, but it’s a good stopping point…

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7 thoughts on “Introduction, Part Two

  1. It must be really helpful to have someone so close to the family that is also dealing with hearing loss, especially a friend that is probably already a confidant. Even if it’s not the same level of loss, it’s nice to know that “normal” is possible.

  2. Hi Andy. I have been following Shannon’s blog for years now and consider her a good friend despite having never met. I have 3 sons and my two youngest are the same ages as Taylor and Alex. My heart has been aching for your family since Shannon first mentioned Alex’s hearing loss. Please know that you are in our thoughts and prayers. Thank you for sharing your journey with us- I hope writing it gives you some relief!

  3. So sorry you all are going through this. I think this blog is really going to help others if they find themselves in similar situations, and I also think this is going to help you and Shannon with the healing process as time goes on. I’ve been following Shannon’s blog for awhile now, and my son Aiden is a month older than Taylor, and Callen was born two weeks after Alex. I can’t even imagine what you all are feeling/going through, but know that you guys are a wonderful family and team. You will make it through this, and Alex has an amazing, incredible future ahead!

  4. Hi, I know there is more to your blog, as I just started reading it. but I wanted to give you a little encouragement, your son will be fine, better than fine, he will be great! I am profoudnly deaf as well, I had progressive hearing loss, while I was born with hearing loss, it got worse as I grew from a child into a teenager, so by the time I was graduating, I couldnt hear a thing. At the age of 23 I decided I wanted a Cochlear implant, and this was a fantastic decision for myself. I am now bilateral, and even though I have gone through a failure on one of my CI’s, it was a great decision for me. I am 25, I have a wonderful full time job, and have not relied on my parents since I was 18. I graduated with honors from High School, in the top 5% of my class, graduated in 3 years from Northern Arizona University and will be starting my Masters classes for IT this summer. While my CI has helped me excel in my job, it wasnt the reason for my success. My parents devotion to me, and helping me learn to read at a young age were what helped the most. Something else that has helped me tremendously is not having to fully rely on technology such as hearing aids or Cochlear Implants. ASL has been a huge benefit to me when either a battery dies, it is a noisy situation, I’m frustrated, I’m hurt, scared, the speaker is far away, or many other situations where hearing, especially with a CI is not optimal.

    I also want to assure you, your feelings are completely normal, learning your child is going to have a harder time in life is never easy, especially when you have a doctor give you false hope. I highly suggest you watch One Deaf Child by Rachel Coleman.

    You can also ask me anything, as a Deaf Person who has been there done that, and has just upgraded to the N6’s by Cochlear (which have been a VAST improvement) I’m more than happy to talk with you and give you as much insite as I can about what your child is experiancing.

    • True story – I’ve already read much of your blog. Heh.

      Thanks for sharing everything you already have on your blog as well as your note here. I think we’re on the same page. Our take is that the CI is a TOOL that’s an enabler, but it isn’t the solution by itself by any stretch. A big portion is going to be the therapy as well, but as you mentioned, the real deal is going to be the support we give him as a family. And he’s going to get that, it’s a given, so if I don’t talk about that side of it too much… that’s why. Heh.

      I checked out the Rachel Coleman TED bit. Pretty inspirational stuff.

      I’d love to rap with you at some point about the N6. Thanks for reaching out!

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