A Very Busy Week

Well, the title says it all.

Yesterday:

  • I took Alex to his three-month checkup at the pediatrician’s.  We talked for a bit about Alex’s hearing loss, but otherwise Alex was looking good from what the doc could see.  Good measurements, etc.
  • Our ENT called to give us a phone number to call the genetics department at the hospital Alex was born at.  We’re absolutely going to do it, but my heart races a little bit at the prospect of doing it and learning that our poor little guy has more hardship coming at him.  It may also show that Alex’s hearing loss is the only genetic challenge in front of him, though.
  • Buffalo Hearing and Speech confirmed an appointment we had next week for another ABR.  I asked to be transferred to the audiologist’s voicemail to give her an update on the whole auditory neuropathy thing, just to see if she still wanted the appointment for an ABR or if she wanted to do something different with the time.
  • Shannon was called by the hospital to confirm a follow-up appointment that they do with all kids who were born in the NICU.  From the sound of it, it’s going to be another evaluation to see how those NICU kids are developing and to catch anything early.  It seems pretty redundant at this point, but whatever.

Things are definitely picking up, which makes me generally happy.  It feels good to be taking steps forward.  There’s some sadness in all of the appointments because it feels like a sneak preview of what our life is going to be for the next god-knows-how-much-amount-of-time, but I’m taking the optimistic route and looking at all of these appointments as the beginning of us chipping away at the sum total that Alex will have to go to.  Taking yet more comfort from the hearing loss parenting board we’ve joined, it’s also cool to see that a lot of these parents are asking each other what they bought for their child’s therapists and audiologists for Christmas.  It firms up the notion that these folks are really here to go to war with Shannon, myself, and Alex and they’re going to have a huge impact on Alex’s life.

The audiologist from Buffalo Hearing and Speech got back to me today to respond to my voicemail.  This was the same kind soul who had to give us the news about Alex’s profound hearing loss but did so in a very sweet way, so it was nice to speak with her again.  Her general take on the auditory neuropathy confusion was basically this – the treatment is the same whether it’s AN or not, so it’s not worth losing sleep over it.  I asked her how many AN kids they’ve seen and how they’ve done, and it sounded like a dozen or so had come through and that they had done just as well as the other kids.  She also said that the results from Children’s were encouraging if for nothing other than the fact that the AN indicators she might’ve seen could have just been fleeting.  At the end of the day, her stance was that another ABR wouldn’t be necessary because it wouldn’t really change anything and that we could use our meeting time for something much more productive – getting Alex fitted for hearing aids!  That definitely perked me up.  Even though putting those hearing aids on Alex’s head is going to be tough because it’s going to drive home how REAL the idea of him wearing something on his ears / head for the foreseeable future is going to be, the thought that they might help him pick up some environmental sound and get his brain hearing more trumps the aesthetics, which I firmly believe are going to be temporary anyhow.  A few other tidbits of good news coming out of that phone conversation:

  • Bless our audiologist’s heart, she’s going to try to get the head person at the oral school on the phone to speak with us during our meeting so we can ask any questions we have for that track (the other of which is the ASL / total communication route).
  • She hasn’t seen any kids roll through in a long time that weren’t eligible for cochlear implants because of physical limitations.  Though that’s clearly not a guarantee that Alex is going to be the same, it’s good to know that if we choose to go that route, it’s likely the option will be there.
  • My dad as well as a local parent who is on The Board (which is what Shannon and I call it and what I’m going to use from now on to describe the fantastic Facebook board I’ve already gushed over) both recommended a specific audiologist in the area who’s apparently wonderful with kids and gets great results.  Her name was brought up during the conversation because she’s apparently hopeful to work with us, so I immediately said “Yes, we’ve heard great things!”  Great to know that the person we’ll be working with has already come highly recommended and is experienced.

So overall, a good conversation.  It would’ve been ideal if she had flat-out said “Yup, those other ABRs definitely cancel mine out, no AN for you,” but I still consider it all a solid win.  We’ll take what we can get.

The next two days will also be busy.  Tomorrow we meet with Early Intervention for Alex’s evaluation as well as the formation of his plan, which I don’t think should be anything too insane.  We know we want to go with Buffalo Hearing and Speech regardless of track.  Saturday we actually have an interview with a nanny.  We’re hoping to find someone who’s both reliable as well as experienced who can watch the kids for two days a week.  It’s easier on the kids, it gives Alex more one-on-one time, and it’s easier for Shannon and I to get straight to work and drive straight home to maximize the amount of kid time we get.  Shannon and I have already talked about how we want to supplement anything that therapy does with Alex (or ASL lessons) with him as well, so getting those extra 30 minutes for two days a week will be huge in helping Alex out while also not taking away from Taylor time.  The Boards have mentioned a few times that their children actually find the therapy fun, so with a little bit of luck our little sessions can feel more like play sessions.  Who knows.

In the midst of this whirlwind of activity, it’s a depressing thought that we have to take the efforts to integrate all of this into our lives, but I think we’re all about ready to get to work.

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2 thoughts on “A Very Busy Week

  1. I’ve been following Shannon’s blog for a long time and my hearts breaks for you both that you’ve had this happen with your new baby. I’m a special education teacher, though not for the hearing impaired (though I have many nonverbal students and use ASL with them). I’ve seen the oral program and I’ve seen ASL. While it’s totally, completely a decision that is entirely up to you and Shannon and what’s best for your family, I have seen you mention oral programs a lot, but I wondered something. Are you also asking questions about ASL? I only ask because I work in a school that houses an ASL program (we’re a general education school. The older students (2nd grade on) go to general education classrooms for part of the day with an interpreter). The teacher next to me just got a little guy from an oral program who is 7 and has no language. None. No words, no signs, because the oral program didn’t work. He can’t tell his mother he loves her. He can’t tell her something hurts. He can only cry and point to things. Yet the 3, 4, and 5 year old students in his class can sign full thoughts and have all of their needs met. He’s been in the class for a month and he’s already using sign language to communicate in ways he was never able to when he was still using the oral program.

    Both of you are anxious about cochlear implants and how Alex will be perceived. Nearly every Deaf student at my school has cochlear implants or hearing aids. The other students don’t even notice anymore. A lot of the general education students have learned sign language. It’s not uncommon to see the Deaf students teaching their peers signs and playing with them at recess. We have posters all over the school that teach common signs to general ed students and reinforce those signs for the younger Deaf students who are still learning. It’s a very inclusive environment, not like the old fashioned state deaf schools. Most programs are moving in this direction. We have second graders who can describe how cochlear implants work (in second grade lingo, of course). They’re used to it. They’ve asked questions, wondered why, all the normal kid things, but we’ve explained it to them and they get it. Kids can be mean, but kids can also be amazing in their ability to accept and understand things that we as adults have trouble with.

    I know you and Shannon are probably overwhelmed with information and don’t need yet another person giving advice. But in my years as a special education teacher, the most successful deaf students I’ve been in contact with use ASL. It would mean you’d all have to learn, but think of how that would actually be a benefit to Taylor. She’d be essentially bilingual her whole life, which would set her up to be very successful in learning other languages. Movement is the door of learning and there have been multiple studies showing great academic outcomes for hearing children who learn sign language. You and Shannon seem to be like my husband and I are: spending a good deal of time and effort investigating everything and making focused, well researched decisions. Don’t count ASL out.

    I hope I haven’t upset you or overwhelmed you, that was absolutely not my intent. I’ve been reading Shannon’s blog for years (I think I found it when my husband and I were wedding planning) and so I feel for both of you, even though I’ve never met you (the internets are weird like that.) I just thought I’d share with you another perspective.

    Have a wonderful Christmas and a Happy New Year!

  2. Hi Suzanna, thanks for the note. There’s a lot here, so I might just write a post out of our position on ASL, but no offense taken and nope, not overwhelmed. Thanks for the idea!

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