Ellis Island

I guess I spoke to soon.

I made some inquiries about including ASL in Ellis's IEP evals, thinking that it had been overlooked. Or just didn't really exist. When we were preparing his 3yo transition to preschool evals, my understanding was that there were not official rubrics for evaluating ASL for an IEP (which seemed weird to me). Maybe it was my county at the time, not providing space for such a thing to exist. For some reason, I though this wasn't going to be included.

So anyway, this morning I got a note back saying that they were doing the ASL evals at the beginning of next week, and they just hadn't been included yet in the initial packet they sent home. But they'll be ready by his IEP meeting.

Hooray!! That makes me so happy!

'Tis the season for IEPs. And Ellis is getting ready to transition to kindergarten next year.

No, that is not my baby going to kindergarten!!

Part of the process is evaluations. I was pleased about many aspects of the evaluation results, especially his reading readiness. I was also pleased to read that one evaluator noted that "one should not assume that just because Ellis doesn't respond doesn't mean that he doesn't know." It shows me that the people at E's school really understand him. E sometimes takes a while to process things, and doesn't always respond the way and the timing that you'd like. I just love our school.

One thing that does bother me about the IEP process, though, is that there are many tests by which to evaluate and score Ellis's spoken English language progress, but there are no tests to evaluate his ASL progress. I want to know how he's doing! I can't evaluate his ASL. I'm not a native signer, and probably only sign two steps ahead of him. It's not the school's fault that this kind of test isn't included, but it is a fundamental flaw in the system that I think needs addressing!! So i'll probably be talking to some people this week.

This evening Ellis and I went over to school for the first ever meeting of the CI Parent Support group. The CI Coordinator and I had been talking about this last fall, so I said I'd make soup, because it was either that or, um, pizza. No offense about the pizza, but soup was better. I made a pot of chili and a pot of vegetarian Indian red lentil dal. Around six families attended.

A, the coordinator, talked some about CI statistics. In terms of educational choices, only about 2% of CI families fit in the bilingual category. I didn't realize that we are so few.

We also got a chance to talk amongst ourselves. The conversation naturally evolving from the presentation. Ellis was one of the oldest kids represented in the group. CI's are kind of a new presence at the school, and mostly in the youngest group of kids. So it was good to chat and to meet some new people.

I'm excited about the development of this group. I have gone to some of the meetings for parents of CI kids down at CHOP, but kind of have stopped going. As one family put it, they went to get information and were coming up kind of dry, as the information isn't always germane to a bi/bi family. So it's nice to find our little 2% subgroup. Ha!

(and greetings if you're coming to this blog after meeting us tonight!)

Yesterday we went down to the children's hospital (CHOP) again for Ellis's two year evaluation and mapping. Today marks two years since his activation of his cochlear implant. He wears a Cochlear Freedom on his right ear.

Ellis is interesting. I think we all expected him to really get into his implant, but he hasn't so much. He's not an auditorally-inclined person. I really wasn't sure what to expect at his appointments, because compared to some CI kids who have had implant(s) as long as he has, he might not be doing as much as they are. I will say, though, personally, we don't "need" him to be doing that, you know? He's bilingual. And he rocks ASL. So, for having a deaf child, we're doing pretty well in the language-as-a-whole category. I don't feel defeated or discouraged because he's not indistinguishable from a hearing child.

We met with his former speech therapist, who has switched to part-time following the advent of her cute baby. It was so great to see her again!! Ellis was excited to play with Rebecca again. He often asks for her if he sees that we're heading towards center city. She was mostly in eval. mode. Receptively he's doing really great. Right on target. Expressively, though, well, put it this way: if he doesn't sign, too, I have no idea what he's saying. She's hoping to squeeze him in for a few sessions to help him with articulation.

After lunch, we saw Ellis's audiologist again. Ellis has had mixed experience in the hearing booth, so I'm usually a little nervous. He's never been a fan of the conditioned play (where they hold a block to their ear and then put it in the bucket when they hear something). So this time we tried to do it like a big boy, just raise your hand if you hear something. He loved that! The audiologist got a pretty good idea of what he's hearing with his implant. We talked some and he fiddled with the programming on the implant.

I've been nervous, because Ellis doesn't always want to wear his CI, which is fine, mostly. On the one hand, if he's been listening for awhile and he's tired, that's fine. But to just kind of not wear it, like not wanting to wear shoes, I'm a little more reticent, because consistent stimulation will provide him with the most benefit. So we do a lot of off and on and off and on. He's cool at school, but not so much at home, etc. I wasn't sure what they would say when we went in to his evaluation.

I must say, that we've got to be the luckiest bi-bi family in this country. Seriously, I love our hospital! I love our peeps!! I was explaining to the audiologist that Ellis is making progress, but he's no CI wunderkind or anything. But the audiologist was so encouraging: Ellis is the measure of his own success, and he's doing great! In other words, don't compare him to other kids, he's learning in his own way, in his own time, and that's great success for him. He's definitely getting great auditory benefit from the CI. I'm so happy that our both Ellis's school and his team of hearing professionals see Ellis as a whole Deaf person with a variety of skills, talents, and successes.

It's amazing. Simply amazing. We've been agonizing over how to find an interpreter for our church services. Having made no progress, we turned the project over to Mom, and within a few weeks she has made more progress than we've made in many months.

The background: we finally convinced the session at our church to hire an interpreter. I say "finally," not to say that there was any resistance. Quite the opposite, they were eager to help us in any way we need. But, like good Presbyterians, they have to be thorough. We did a lot of work putting together documents explaining our particular choices with respect to Ellis's education as a deaf child, and particularly why ASL is so integral to his education even with the CI.

Once we'd explained everything, and worked out all the parameters, they gave us the go-ahead. But there was no interpreter to be found. It's difficult because religious ASL is possibly the most difficult ASL, meaning you can't get just anybody who happens to know a little sign. You need a specialist, and you need one that's available. Most interpreters, as it turns out, are committed. Add the fact that our services are, at least by reputation, more heady than most. And add that the ideal candidate would at least be Reformed, whereas most religious interpreters are coming from the Catholic persuasion.

Any way, my Muti called last night to say that she's found someone right around the corner, who is eager to help us. She's so eager that she won't take 'no' for an answer. I can't believe that after all this time, and all this work, the answer was so close. But that's often how it turns out, huh?

I only wish we had been able to move more quickly. Since we started the search, ellis is ten times as ready for an interpreter as he was then. We've definitely reached the limit of what we can do for him in services, and he clearly is stagnating. And we still haven't addressed the issue of religious education in the home. Apart from the challenges every family faces in that regard, we just don't feel that our ASL is adequate to something even so simple as the Children's Catechism.

But now there's a solution in sight. Thank heaven!

A couple weeks ago we had our last speech therapy session at the children's hospital. We have been going every week since Ellis's CI was activated 21 months ago. He does get speech therapy, both group and privately, in school, but we had been going to CHOP for a little extra. It was also nice to have his therapist's input on his development, since she has more CI experience than Ellis's school (which is actively striving to improve their CI services; don't want to discredit them). CHOP Therapist and School Therapist also communicated closely, so it was a great situation for Ellis. But, happy for Therapist, she just had a baby girl! And only plans on returning to work part-time. So we decided to go with just the school therapy for awhile and see how he does, checking in with Therapist every few months at CHOP.

I think it will be a nice break for Ellis, to let things sink in for awhile. He's not a CI wunderkind. He's not the kind of kid who falls in love with his CI and wants to wear it all the time. There are often a couple hours a day where he doesn't want to wear it--almost two years after getting. And it requires a little extra effort (than another kid with CI in similar circumstances) on his part to speak and to listen. But he steadily, very gradually improves. For instance, for months and months and months, he's been calling me "Mah-eee". We've worked and worked and worked at getting him to say "MoMMy", which he can do in a therapy session, but won't spontaneously say. Lately, I'm "Mahtee". Well, at least we got a consonant in there.

For Ellis, I think his first language is truly American Sign Language. We've tried to give him as equal opportunity in both spoken English and ASL as we can. We've provided the same kind of CI environment (talk, talk, talk, narrate, narrate, narrate) that other hearing families do. But without stopping signing either. For us it's a whole language environment. We don't care so much that he learns to speak just like any old hearing child (though prospects are good for pretty good speech); we do care that he always has as much access to language as possible.

I recently caught Ellis signing in his sleep. Now if that isn't native language behaviour, I don't know what is.

Yesterday was such a dreary day! We woke up to a blanket of snow that eventually got soaked with rain, becoming a wretched blanket of slush. Since our weather was somewhere between snow and ice, I took Ellis to his audiology appointment via regional rail instead of driving. He was absolutely thrilled to be able to ride the train and said "choo! choo!" the whole way there. I suppose I could've rescheduled the appointment, but I already had rescheduled it a couple of times, for various reasons, so we braved all the yucky slush.

At Ellis's last few audiology appointments, he has had a really hard time with the hearing booth. So at our previous one, I had made sure he had a good night's sleep, was well-rested, well-fed, well-connected, and by all accounts, it should've been fine, but it didn't go well at all. He was afraid the hearing booth. And was very unresponsive, though I, his audiologist, and his speech therapist (both of whom he really likes), knew that he could hear stuff. Needless to say, I was really nervous about yesterday's appointment. Especially since I hadn't had the opportunity to make sure all his environmental considerations were as best they could be. And then we slogged through the snow on top of it all (though, I don't he minded that part). But the appointment went great!

His audiologist did some tweaking before he got into the hearing booth, and I think that helped him warm up a bit. And his speech therapist (who he loves) helped out some, too. I think that helped him feel more comfortable, especially since at that point Marlowe decided not to take the nap he needed, and I had to leave the hearing booth.

I'm always amazed at how much he can hear with the CI. He was responding to sounds so quiet that I could barely hear them. But, as I keep reminding people, it's not all about the mechanics of sound, it's also how sound is mediated to the brain. There's "hearing" (the audiological act) and there's also "hearing" (the creative act).

A couple of months ago I attended a presentation that CHOP did about bi-lateral CI's. This is not something we're interested in right now, but I wanted to see what they had to say. One of the benefits that struck me was that of binaurilty, the way the ears interact together to bring sound to the brain. I wondered if wearing a hearing aid in his left ear could help Ellis in that respect, and also take advantage of sound stimulation on that side.

So the audiologist took an audiogram of Ellis's left side. E did great, and he got a really good picture of what was going there. His thresholds were at about 110-125 db (getting progressively worse as the frequencies were higher), that is, profound hearing loss. A hearing aid would only bring him into the range of moderate hearing loss, and probably wouldn't benefit him all that much, except for vague sound stimulation. It would not help to create a situation of binaurality; he would need a second implant for that. And like I said, we're not going down that path right now. So it was an interesting discussion, and I'm glad we had it.

In other CI news, Ellis is FINALLY wearing the babyworn snugfit on his behind-the-ear processor. He's always had a BTE, and would never wear the snugfit. We've had to tape it to his head everyday! (thankfully, he didn't have sensitive skin) But I think we may be entering a new phase of ease. (Though I'm still keeping the tape handy.)