14 Weeks In

Alright, so maybe every three weeks per blog wasn’t going to happen. Alex’s progress remains steady, but gradual, so we don’t have way too many killer “AH HA! GOTTA BLOG ABOUT THAT!” moments.

On the physical therapy front, Alex is on the cusp of walking by himself. Shannon and I will sit in a room, put about 12 feet between the two of us, and Alex can walk that distance. His biggest issue at this point is just doing it himself. If he was a little more bold, he probably would’ve been walking back in November or so. I’m impatient, but it’s not really stressing me out. There’s no doubt we’re seeing progress, this is nothing out of the norm. He’s just a cautious kid.

On school – Alex is in, which is huge. He’ll be going in three months prior to when most kids start. We ran into a little bit of resistance with the Early Intervention program, initially – they generally stick to their guidelines, which stated that Alex had to be 18 months old prior to entering. Luckily, we had to have an annual meeting anyhow, so we had a great meeting time to discuss why we wanted Alex to go in. Leading up to this meeting, I had read up on what sort of options we’d have to fight a decision against Alex going to school. The next course of action would have been to go to arbitration, which would’ve been costly for the Early Intervention program since they have to pay for the arbitrator, have someone argue their case, and make it all happen within a month of our saying we want arbitration. I’m glad that it didn’t come down to having to go that route (which we would have). At the meeting, our speech therapist basically just laid out a rock-solid case as to why early schooling would be appropriate for Alex in a very fluid way that I wouldn’t have been able to express. The big points:

  • Alex is doing very well with his therapy now and would benefit from the program; he isn’t the bottleneck.
  • Alex is going to daycare anyhow, so why not give him the therapy?
  • The classroom environment is appropriate for Alex – he won’t be mixed in with kids who are 3 and 4 years of age who could trample him or anything like that.
  • Early implantation / therapy is becoming increasingly common because of the benefits, there’s lots of research that has been done in this area.

After she was finished, there was a lot of head nodding, and that was that. We were good to go. The supervisor who attended who had to approve it explained to us that she wasn’t TRYING to deny Alex the schooling, but there’s a process, the reasons have to be there, etc. It was all completely fair. I was geared up for a fight, which I guess isn’t a bad thing because I would’ve been prepared, but really we just had to validate why this was going to be good for Alex.

So there we are – pretty big move. I can’t think of what the next possible fight would be for a few years… probably when early intervention ends, but that doesn’t happen until he turns three and I’ve never heard of that transition being particularly rough.

Alex will be going for three hours a day, three days a week, starting in January. Parents are encouraged to see what goes on at the school so that they’re aware of what their child is up to and to hopefully also bring some of what they’re doing at school home. We’ll certainly be doing that because making sure that Alex’s therapy continues at home is hugely important to us. Very cool to think that he’s doing as well as he is right now, and he’s going to literally be getting nine times as much therapy per week soon. I’m not too anxious about it outside of falling into the groove. The bus that will pick him up and drop him off is probably the only thing that has me a little be nervous, but they have attendants on the bus who can help keep his CIs on on the bus and it’s apparently a pretty straight shot between our house and Alex’s school – it’s not as if they’re picking up twenty other kids or something. As far as the school itself goes, though, I’m not worried. Alex has already done the daycare thing, though he might have some initial anxiety about the new environment. Even then, though, his teachers and therapists will be around, so he’ll have some familiar faces around.

Speaking of Alex’s school, Shannon and I sat on a panel for a little dinner event they held. We were asked to participate and answer questions about our experience so far and we gladly accepted, since our mantra with this whole thing is to try to help out others if we can and make the process a little less mysterious and scary than it was for us. Anyhow, there weren’t really too many questions directed at us from the audience (those with younger kids, we already had been in touch with at some point or another and those with older kids, they were further than we were anyhow). I can’t think of anything way too interesting that came out of it. Our general message was to integrate the therapies into your day-to-day lives, keep the CIs on, and do your research. It felt somewhat odd to say that, because you would THINK that would be pretty obvious, but I guess a lot of people don’t do that research so maybe they haven’t seen all of the success stories that all used those strategies. At any rate, I was really happy to help out. I hope Alex is one of the kids that sits on the kids panel at some point. The only other thing I can think of that was noteworthy was that the other parents who sat on the panel had a child who had recently graduated from the school and mainstreamed. They had nothing but good things to say and that the mainstreaming process has actually been solid so far. Good to add yet another positive story like that.

As far as Alex goes, his receptive language (what he understands) is coming along pretty nicely. We’re guessing he’s somewhere in the realm of 25-30 words that he knows at this point. Expressively, he isn’t babbling yet, but we are getting some “EIEIO”-like sounds from him. Everyone’s theory at this point is that he’s again on the cusp of THAT blowing up, so pretty exciting.

Any fear I might have had about taking Alex out in public and getting stared at is basically gone. I don’t care anymore and now that I’m not looking for the stares, I don’t really notice them. I know he’s probably getting some double-takes, but that’s a complete joke compared to the benefit he’s very obviously getting at this point. I’m guessing that we’re going to see the next crop of cochlear implant processors coming out soon – very excited to see what they do with those, at least in terms of size reduction, waterproofing, etc.

He has little issue with keeping his ears on, even with the snugfits. Pretty sure we got lucky there, especially after talking with another parent who said her child wouldn’t keep them on for more than an hour and a half TOTAL per day. I’m very grateful Alex has been so good about them, because just keeping them on was a major source of stress for lots of other parents and I don’t feel like I can really relate.

I brought it up last time, but it’s worth repeating – just an incredible difference in one year.