9 Weeks in

This is probably the easiest way to come up with titles, especially while nothing too crazy is happening.

Alex continues to progress in that he’s picking up some new words. I’d say he knows (as in understands the meaning behind but can’t actually say) about ten or so now. He’s still vocalizing a lot, but nothing babble-y. Our teacher of the deaf told us that it’s not uncommon at all for hard of hearing kids to completely skip the babble phase and dive right into actual words, which I’d never read anywhere. Hoping that’s the case.

He still isn’t walking yet which means we still have a physical therapist, but we don’t suspect any sort of balance / vestibular issues. He’s just a little bit cautious. The good news is that he loves being walked around (where he holds our fingers), but he’s a stubborn little guy; he’ll stop in his tracks and throw a little fit if we try taking a hand away. This is an area I want to work with him more in since it will get him away from needing a physical therapist as well as qualifying him to go to his oral school early.

Speaking of that – last week, our speech therapist mentioned that we could likely get Alex into school early if we wanted. I’m pretty sure I already wrote about this, but basically “school” means that Alex would get picked up by a bus, driven to Buffalo Hearing and Speech which is about a half hour away from our house, and he’d spend three hours a day there for three days a week. Each one of those days would be comprised of activities and therapies focused on building up his listening and speaking skills. We had originally thought we wouldn’t be eligible until Alex turned 18 months old in March, but there’s some flexibility and both our teacher of the deaf as well as our speech therapist think Alex is ready because of how well he’s doing already. He’s supposed to be able to walk by then, but we’re thinking that by January he should be there, or close enough.

Shannon and I are both pretty excited about getting him into school early; he’d get nine hours of focused and directed attention and we’re all about pushing him and taking advantage of all of the benefits that are available to him as an early implantee. Additionally, the earlier we get him into the three day program, the earlier we can likely get him into the five day a week program to get him even more exposure. So that’s the new push. We’ve already hammered out some of the logistics which look they could be pretty helpful for our family in that we’d have our super-dependable and super-involved nanny (my sister-in-law) at the house for four days a week to keep things straight while we’re not around and keep both Alex and Taylor alive and happy, so I’m feeling about ready. The biggest question mark at this point is probably how the bus will work (I don’t want him on a bus for two hours or something insane), but from what we’ve heard so far, it shouldn’t be an issue and there’s some opportunity to butter up the bus drivers and the attendants who ride with them, which we’ll obviously do.

I spoke with a mom about a week ago who just recently learned that her child had a profound hearing loss and gave her some of our experiences and hopefully a few words of encouragement. It felt nice to do, because ever since the blur of depression and confusion we started going through about a year ago began, I wanted to be the person I wish that WE had had at that point to give us the details on the doctors, the specific processes so that we really had a good idea of what was going to happen, the overview of what you’ll find on the internet and where the good stuff is, and most importantly, to hear that reinforced “but seriously, everything’s going to be fine.” I had a little trouble with the last part because, having been in those shoes, I completely get how that wouldn’t bring too much comfort because it depends on certain things lining up like the ability to get CIs in the first place and feeling that you have no luck by default because your kid was that one in a thousand who was affected, but regardless, I hope some of that came through just by tone of voice.

I mentioned it to Shannon, but given that our names have been given out to a few “new” parents already, I wouldn’t mind formalizing something with BHSC where they give our info out to anyone who’s interested and we have them over for lunch and just let them bombard us with questions, show them how Alex is doing and what the CIs look like and feel like in real life… whatever would help. If we could take a few scared-shitless parents into our house and have them leave with a little less confusion, a little more confidence, and having seen a few things that might give them some encouragement, it’s absolutely worth whatever the time commitment would end up being on our side. I would’ve killed for that, but the people that we reached out to who lived in our community never even responded.

Pretty sure I’m going to pitch that to the school at some point soon.

I’ve already briefly mentioned it, but I’m flying pretty high on how much better things have improved in a year. This time in 2013 we were absolutely in the shitter. I can’t even look at the first few posts I wrote because I’m sure I’d cringe at them in embarrassment for what would read like intense melodrama, but that was the reality of how I felt. A year later and we basically accomplished everything I had hoped we’d be able to. Alex is on that track and he’s kicking ass so far. No surgeries or anesthesias left to freak out about, and we’ve settled into a very livable and doable pattern. This is also holiday season, which Shannon and I both love. Nearly all of the fun was sucked out of last year’s because there was that constant underlying fear, but we’re through that now. Really, really looking forward to what feels like our first holiday with the full family without the horrible baggage.

Last thing I guess worth mentioning is the therapies – we’re up to once a week for both the teacher of the deaf as well as speech therapy. They’re both following the same general pattern. Listen and learn box, Mr. Potatohead (for body parts), and generally showing us the ins and outs of how to reinforce listening skills with Alex. We generally learn something new each time despite the processes being repeated weekly, but us learning those new things and incorporating them into our day-to-day interactions with Alex are much more valuable to his continued development than the half hour therapies they do by themselves. They constantly tell us that we’re all-star parents, which is great for reinforcing our efforts though surprising because we’re not doing anything you would think would fall out of the envelope of normalcy.

Last random note – Alex is using Snugfits a little more and doing well with them. They’re not quite as easy as the headbands, but they also aren’t as bulky, which Shannon and I both like. As he continues with his CIs, I think he’s starting to take to them more and more. He rips them off of his head even less than he did a month ago, which was infrequent as is. He keeps giving us signs that he misses them when they’re not on, too. Still feeling very fortunate in that regard. Not only is it easier for us in terms of maintenance (though flipping his magnets back onto his head when they fall off happens in total autopilot now), but it’s nice for him to give those indications that he’s digging these and that he’s liking being a hearing kid. I’ve never really doubted that we weren’t doing what’s best for him given the direction of deafness and treatments in general, but those signs from him are still good for the soul.

That wraps it up for now – back in another three weeks, maybe?


One thought on “9 Weeks in

  1. Just awesome! I’m so happy for you guys! And you ARE all-star parents! I hope you are able to do something for other parents on a more formal basis. That sounds absolutely fabulous!

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