speech therapy

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.

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.

...for every Phillies Tshirt I saw today...

Yay Phillies! I must admit, though, it didn't even occur to me to watch the game last night. I think I may have heard that it was going to be played on Wednesday, but it didn't really compute. I was too busy watching Gilmore Girls. I'm up to midway through Season 5. But it is fun to be living in the winning city and seeing everybody be so excited. So. Yay Phillies!!

We went down to CHOP. In addition to our regularly scheduled speech therapy, E had a CI mapping. The audiologist wants to see him a little bit more frequently, because, well, Ellis just doesn't do that great with him. The audiologist has yet to get a really good idea of what's going on in Ellis's head. Thank goodness the speech therapist works in the same office. We're all pretty confident that he's hearing fine, but E just doesn't really do hearing booth, shall we say. But then he had a very, very good speech therapy session. In fact, he knew he was doing well, because he kept beaming and we kept cheering. So he marches to his own beat. Full of surprises that kiddo.

And tomorrow is Costume and Candy Day (otherwise known as Halloween, but we're really just in it for the extra dressups and sugar rush). So a costume must be had. And it's the Rule that we make our costume. And since E doesn't really know what's up yet, we still get to choose his costume. Chris had the great idea of Airplane. arms as wings, a propeller attached to a Tshirt. Hat. Glasses. Voila. The key is Simple this year. Ellis painted the wings this afternoon, and I've been doing the rest this evening. I can't wait for him to try it on. They have a little parade at school, so I wanted it super simple, since the poor teachers are going to get all their kids into their costumes. I don't want to give it all away. So I'll probably download the gagillion number of pics on my camera tomorrow and post some already.

Hubby blogs----

Wow. What a week. Actually, it's been a week and a half. About the middle of last week, I was looking at a deadline. I knew I had to finish this particular project by the end of the week or so, though I did think I would have the weekend. But for the life of me, I could not get to that project. Whenever I tried, I would be interrupted by some new disaster at my other job. In fact, they owned me for about three days. So by the end of the week I turned to finish the other project.

I knew it would be a programming marathon, but I was determined to make it happen. After almost forty-eight hours without sleep, I had what I had. But I still was not where I needed to be, and my employer was -not- happy with my progress. I swear, thought I would lose my job.

So I worked through Sat. and Sun (I NEVER work on Sundays). And on Monday I was feeling comfortable that I could be done in reasonable time.

Then my other job called up. Disaster. Our client was -very- unhappy. Things had gone completely wrong over the weekend. And though it -really- wasn't our fault, we naturally had to share the blame. So it fell to me on Monday to be the one to offer a solution that would save not only the project but our relationship with the client.

In a moment of complete psychotic disassociation from reality I suggested it might be possible to put together a complete social networking environment in Drupal, within 24 hrs. We already had a template, which could easily be tweaked for the purpose. And once again, another forty-eight hour work marathon later, I was in the same situation as before: desperately trying to put something together in a pinch, hoping it would be good enough to buy more time to keep desperately trying to put something together in a pinch that would buy still more time. Only now I was doing it on two fronts, for two clients.

I don't have to tell you that as I sit here I feel like I've lived five years in two weeks. I'm just now remembering that I have a family, and I'm trying not to think about everything I have left to do. I'm trying to think of what to say to my wife to start getting to know her again. And I'm not sure that Ellis remembers who I am.

I did find out from talking to her today that Ellis had a rough speech therapy session, though not in the usual mode of rough. We've been struggling to keep him engaged during the sessions. The therapist thinks he should be making more progress than he is. So she asked a colleague to run this week's session, while she watched.

Second opinions can be just the thing for getting over a hump. Unfortunately, it seems that one of the reasons we are not seeing the progress we should may be that E has processing difficulties. He's struggling in ways he shouldn't, even given the challenges of being deaf. And maybe he is showing evidence of this processing problem in ASL, too. Only we would never have known it, because we could never get anyone to give us a proper ASL evaluation as part of our IEP.

So yea, we've pretty much had a normal week. What's new with you?

We spent the afternoon at CHOP today. Ellis had his one year evaluation and mapping for his cochlear implant. The past few times he's been in the hearing booth, he's HATED it, like cried and crawled all over me. Today he was much better, and even cooperated a teeny tiny bit. But not enough to get a really good audiogram. It was progress, though. His audiologist wasn't too worried, though. He worked with him in the CI tuning room and was able to fine-tune the program a bit more. He's been using the ADRO (Adaptive Dynamic Range Optimization) program comfortably for several months now, and we're sticking with it.

Ellis then had the official speech evaluation with Awesome Therapist who we see every week. E was really tired, though. She was able to get him through the questions pretty quickly, and combined with what she knows from weekly therapy, evaluated him at approximately 18-24 mos in terms of age level auditory-verbal language skills. He's 37 mo, but has only had auditory access for 12 mos, so not bad. He's not a CI wunderkind, but he's doing pretty good. And we're happy with that and proud of all he's done. I do think his therapist/audiologist/and us! would all like to see him a bit better, because we know he CAN; he has the auditory access and the intellectual capability. The question is, does he want to? haha! We think that he'll let it all simmer for awhile and then one day when we think he'll never do it, he'll come out with it like he's been doing it all his life. That's sort of his learning pattern. Not like anyone else I know or anything...*cough* his father *cough*.

I was really proud of E. That was a long day of listening, and he worked hard! He fell asleep in the car almost instantly. Yes, He Who Does Not Nap. That's how tired he was, AND he stayed asleep when Daddy carried him up, lay him on the couch, and washed his face. poor boy.

There's a lot of work ahead of us, but at the same time, if you take a step back and see what he IS doing, none of it he could quite so easily or at all without his implant. That's kind of cool.

One of the things that needs to happen before baby is getting Ellis's IEP squared away, which is scheduled for May 2.

So far, the IEP is turning out to be a much saner arrangement than E's IFSP (the 0-3 program). It's just us and two intelligent people who are easy to work with and are specialized in deaf education. With the IFSP, there's a weird arrangement of service coordinator (who is basically a paper pusher with no specialized knowledge), a representative from a contracting agency, a crazy array of teachers providing a variety of specialized services. I find it a little annoying.

Yesterday E's new speech teacher was accompanied to our home by the person from our county's intermediate unit who supervises all the deaf ed stuff. She's really great. They both are. I imagine we probably differ a little on a personal level in terms of deaf educational philosophy, but they are really supportive of us and have been extremely helpful so far. I knew this was our official Evaluation Sessions for the IEP, but I wasn't sure exactly how they would approach it. Essentially, E had a normal "speech therapy" session, they got some information from us, and now we can check that step off our list.

I know they are qualified to evaluate him from an entire language perspective, but most of yesterday's evaluation was focused on listening and speaking with an acknowledgement of his skills in ASL. I wonder if it would also be appropriate to evaluate from ASL only point of view, too. I think I will have to ask his Deaf teacher about that. Though I'm not sure how their evaluative rubrics would accommodate that, it seems that if we're being truly consistent with our educational goals for him that this would need to take place, too. Hmm. I guess I'm off to write some more emails.

E's been doing really well about wearing the CI. Much better. He's worn it without taking it off all day almost every day for the past couple of weeks. (Except for the bit yesterday when he wouldn't wear his hat and CI at the same time--and the hat stayed, of course, it's all about fashion). It's nice not to have to search the house multiple times a day to find the stashed CI. Overall in life, E seems a bit more settled. I think coming out of a phase of disequilibrium.

I can see improvement in his speech/listening, too, no doubt thanks to better CI wearing habits. I've realized that I have had to come to peace with speech therapy etc. We were so conflicted about the CI and so protective of his signing, that it's taken us a long time to really accept speech therapy on a certain emotional level. E continues to do well with ASL, and I feel like I can relax a little about it. He's in an environment where his ASL will be nurtured and will continue to grow, and I don't need to be so tense about every little language choice. It also helps me to encourage him more in his speech/listening, since he has the tools to do well, in terms of both equipment and cognitive skills.

Anyway, so a couple of my favorites that are new-ish:

* When we're driving around (which we do a lot) I usually point out the traffic lights and holler from the front "Red! Stop" "wait, wait, wait" "green! go!" Sometimes I sign, too, if it's convenient (and esp if the CI got hurled across the car). Lately we've been hearing him chime in from the back, too. "ee! op!" "bee, bee" (he still says "bee" for "wait) and then a gasp of excitement when it changes (every time! I love this kid!) and "EEE! OOH!" He's taken to enacting this out with his cars, too. Very cute.

* and finally I am referred to as "mah-ee" instead of "bee". Woohoo!! Daddy has been "yayee" for a long time. But I finally got a "ma-ee." He labels us and what belongs to us all the time. Like going around the table: Ellis's plate (he says like a cross between "el" or "uh" for his name), Yayee, Ma-ee's plate, etc. He's really internalized Ma-ee, too, because the other night he came stumbling into our room and when I picked him up, he said, half-asleep "ma-ee" and signed "mommy". *melt*

* about a month ago he nailed "sh" and "s", too. yay! that makes all 6 ling sounds that he says.

I probably should add that we have a new speech therapist from the county who will be coming to the house, in addition to Totally Awesome Fabulous Speech Therapist. The other therapist was not going to work for us. She wasn't a bad person or anything. And E liked her just fine. But I felt like the sessions were anemic; they could've been so much more. I couldn't see her plan or trajectory and kept feeling like I wanted to take over. It wasn't worth the distance we were traveling. Thankfully, the go-to person for deaf EI/Preschool in our county pulled some strings for me to get this other person, whose has plenty of CI experience and is current with resources. I feel like I can ask a question and get good response--I have confidence that she knows the territory. And she signs. I like her, and she'll work for us. And she'll be coming to the house. SO NICE!

It's been six months since Ellis's CI activation. It was actually 6 mos exactly a week ago, but I've been wanting to sit down and write a long, eloquent post, but it's just not going to happen, at least eloquence isn't. So I'll pound out some details just to keep them around.

Last Thurs in his speech therapy session at CHOP, Totally Awesome Therapist declared that Ellis was ready to graduate from Learning to Listen Sounds (like "choo-choo" for train) to actual words. So we're cycling back through a few consonants adding words. So far (in no particular order) we've done B, M, P, H, N, and W (with a variety of vowel combinations), and are now back on B for words.

He has good auditory discrimination (esp pitch and rhythm) and short-term auditory memory. He imitates speech ALL the time.

He has about 40 words expressively and receptively (speech that is, he's hundreds in sign, of course--we lost count over a year ago). It's funny to go through all these stages again, because I feel like we were just here...just in ASL.

Words he says (well, they aren't perfect, but the meaning is there). I'm going to record how he says them, because it's so cute (sorry if this is crazy pedantic, it's partly for my record, too):

stop (a silent "p", sometimes "op")
help (silent "hp")
ow
whee (as in going down a slide; this a Learning to Listen [LTL] sound)
yay (as in yippee!)
eww (as in yucky, dirty)
Mmm (as in yummy/eating; LTL)
pop (says "pop" but it's silent/whispered)
sssh (as in sleep; LTL. Actually he makes this by sort of blowing through his teeth, same with the "s" sound)
no (oh)
yes (yea)
more (mo)
hi (silent "h")
bye
open (oh)
go (oh)
wash (ba; can sometimes get a "wa" out of him, but he's hanging onto that B)
water (ba)
wet (ba; he signs with these, so I know which one it is)
jump (silent "p")
up
Daddy (aa-ee)
Poppy (my FIL, silent "pop")
baby (beebee)
eyes (long i sound)
nose (oh)
all done (ah-ba)
dirty (uh-ee)
hot (silent "ha")
juice (ooooh)
ball (ba)
beepbeep (as in car; LTL)
moo (as in cow; LTL. says "ooooh")
meow (as in cat; LTL. says "ow")
woofwoof (as in dog; LTL. says "woo, woo")
knock-knock (as in door; LTL. says "bah, bah")
choo-choo (as in train; LTL. says "ooo-ooooo")
aaah (as in airplane; LTL)
quack-quack (as in duck; LTL. says "ba, ba")
shoes (oooh)
wait (bee)
please (eee)
wow (bow)
I swear he said "ah-oo" for thank-you the other day, too.

He might not always get the consonant/vowels completely right, but the inflection is usually really close. I'm happy that he's getting the hang of this talking thing and seems to enjoy it. When his CI is on, I see him incorporating talking into his play independent of us, and that's really where a child's learning and internalizing takes place. It's sweet to hear his little voice saying "oo-ooo" over his wooden train track.

Thanks to his totally awesome bilingual classroom, though, he is still progressing marvelously in his signing skills. It's hard for me to sit here and make a list of what he's doing in sign, because by now it's such a natural part of our life. This is where we have conversations.

He reads books in ASL now, simple stories, like his favorite, Five Little Monkeys Jumping on the Bed (or any of the sequels). He doesn't use classifiers perfectly or anything (even I don't! top on my list of ASL Thing I Need to Finetune), but he's got the basic gist. He uses more descriptive signs all the time, like colors, feelings, fast/slow. One thing that I think is really cute is that in all the pictures he points out the little kid as him, an older male as Daddy, and an older female as Mommy. I think I make a nice Mommy monkey. :-)

He's still in love with his letters. He's nailed a few more handshapes (I and J are big accomplishments). He's SO cute the way he stops, makes the I, and carefully signs "noodle". He's only got one handshape left to grow into, W. He still makes a 4 instead.

And, get this!, he recognizes his printed name!! Can you believe it?! They're doing this at school, recognizing their own and their classmates printed names and fingerspelling them. We were at a parent-teacher meeting, and one teacher showed us this and held up some random kid's name (only letters, no pictures), and E glanced up and did her name sign. We were so surprised! haha!

We have our first meeting to transition him to an IEP in a couple of weeks. He will be turning 3 in June. I'm really not looking forward to this. If you have any advice about making IEPs say what you want them to say, please let me know. I have a couple of books I'm looking through, so that I'll at least know what we're legally entitled to.

So that's Ellis News, the Quick and Dry Edition. I wish I had a fun movie for you, but life is so fleeting around an super, speedy-fast 2.5 yo.

We had our first meeting today with Ellis's "new speech therapist." I put that in quotes, because I'm not sure if we'll keep her. She drove me crazy. I'll give her a few sessions to find a groove, but if it ain't groovin' I'm ditching her.

We wanted to add another therapy session per week, in addition to the one we're getting from Totally Awesome Speech Therapist at CHOP. I was optimistic, because speech therapy has been rockin' so far. Basically, as I described to someone earlier, Awesome Speech Therapist empowered our whole family from day one. "New Speech Therapist" made me cry in the car.

(It really humbled me, too. I can see how many wonderful situations God has put in our path, situations that we just sort of "accidently" stumbled into. When I glimpse into how worse it could be, I am so thankful.)

I also feel confirmed in our desire to stick close to the School for the Deaf. It is a much different place than a Classroom for the Hearing Impaired. *gag* The Deaf School values my son differently, and after today, I wanted to gather myself around Ellis and run from that place, protecting him from awful vibes. Maybe my pregnancy hormones are overreacting. He had fun playing with all the toys, and I doubt he felt any different. I'm the one who felt awkward, and I found myself signing to him while we there, because it was the "safe" language.

"New Speech Therapist" didn't really listen to me when I tried to explain where E is in his CI development. I realize that this was just the first time, but you know, she didn't do a whole lot to get to know E, where he is with his CI, how his signing fits in, his personality, or even our educational goals for him. She involved me minimally, and Awesome Therapist is in constant dialogue with me, like we're real partners. I'm not stupid, you know. Anyway, I was pretty pissed off when we left. And I cried in the car.

At least we got to stop at IKEA on our way home. Nothing like a romp around Swedish paradise to soothe rumpled spirits.

(I started this last thurs. better finish so I can get to other things)

Today Ellis and I went to the children's hospital (chop) for his weekly speech therapy. I'd prefer that we not be going to a hospital for that as it reinforces the medical associations with deafness, which we essentially believe is a social, not a medical, disability.* But, that aside, the therapist there is the best thing we've got going. Don't even get me started on how dumb my county is. Not to mention the fact that E is the ONLY kid in the county who receives Early Intervention services, has a CI, and whose hearing family signs. Can you believe it? So anyway, I'm having trouble getting a speech therapist in my county because we don't go to the "other" deaf school. So we go to the hospital.

Quite frankly, if it weren't for hauling into center city and going to a hospital once a week, two things I can live with, I'd happily keep our therapist for eternity. I so heart her!!

When we first started with her, I was a little nervous, because she is an AVT therapist, so I wasn't sure if she would respect our desire for E to bilingual. Well, not only does she respect it wholeheartedly, she suggests ways for us to incorporate the speech and the signs without one losing out AND she even uses signs with Ellis (which means she's taken the time to learn a bit of ASL). Of course, her attention is primarily focused on speaking and listening, but she's very good at strategically incorporating Ellis's already existent language.

He's doing really well, especially expressively. He's vocalizing a lot. And now regularly says bye-bye (ba-ba), and I notice him saying "ba" with other signs (like "wait" or "train") as his token word. Very cute.

It hasn't even been two months yet since his activation, so the therapist is naturally pleased with his progress, then she something really interesting. She said that he was catching on quickly and that she's starting to notice that consistently kids who have signed before their CI catch on more quickly than kids who don't, probably because they have a language base. To which my thought is duh. I love that she is noticing this empirically, though. And then she said, "it's a difficult position [being a parent]. I always thought that if I was in that situation I would just go to listening, but now I'm not so sure."

I hope we can stay with this therapist for awhile. I really like her. I'll stay with her as long as medical assistance will fund it. And my county isn't making great strides in finding me someone suitable.

*Before I get raked over the coals for anything. :-) Bear with me as our thought processes develop. When the dominating/majority culture is hearing, being deaf requires social adjustment. It is unfortunate, but nevertheless, a reality. Hopefully, in the future, the adjustment will be more slight. Some of the polemic out there reduces deafness to a medical problem, thus making the deaf person someone to be treated. I hope we can get beyond that, because deaf kids are just as healthy as hearing kids. In fact, one of the reasons I was happy when i found out E was deaf was because he was happy and healthy!! Unfortunately some of the technological tools I want to give him are located in the hospital.