CHOP

Today Chris and I were on our first parent panel. We were asked to come to a regional meeting that the State Dept of Ed sponsors for those who are service providers for children with hearing loss. There were people in the room from all over eastern Pennsylvania. Also on the panel was another mother of a kid from PSD; her daughter was in E's class last year. And a mother whose kid was in an oral program. All three kids represented are going into Kindergarten next year. It was a good experience. I hope we were able to be helpful.

I thought I would list the questions and the answers that we prepared. We didn't really follow them as a script, but it was helpful to write out something to organize our thoughts. And also, the usual caveats...this is what is good for our family, but I think there are some general thoughts that anyone going down any deaf educational path could find some benefit from.

1. Please share how the news of your child’s diagnosis was shared with you and what information and resources were given to you at the time of diagnosis.

We came to understanding of Ellis's diagnosis gradually. It took us awhile to understand what the "referred" meant after he failed his newborn hearing screen. We had an appointment with an audiologist at Temple Children's that was not helpful at all when E was 2 months. When E had a "no response" on his ABR, he said that didn't tell him how much hearing loss that he had. This audiologist only told us that E had "some hearing loss" and gave us an Early Intervention number to call for our county. It wasn't until E was around 7 months old and we transferred to CHOP did we get a clear diagnosis of profound sensorineural bilateral hearing loss. And we were already happily enrolled in an EI program. The audiologist at CHOP introduced us to hearing aids and was the first to suggest that he may be a candidate for a cochlear implant.

2. Describe your and your family’s feelings at the time of diagnosis and what type of support (if any) that you found helpful during this time.

I think it did help that we came to a gradual understanding of his hearing loss. We had no defining, black-and-white moments where a diagnosis was handed to us, the unsuspecting parents. But overall we were actually very calm and accepting. To us it didn't seem like a tragedy. All we saw was a healthy, happy baby, and walking through a children's hospital where babies are fighting for their lives really puts things into perspective. I think the Early Intervention support we received from PSD was the most helpful. Our home visitor became a vital part of our life those first couple of years, and we still keep in touch with her.

3. How was the Communication Opportunities shared with you and your family? Do you believe that all options were equally available to you and presented to you in an unbiased manner?

I do believe we were presented with all the options in a very fair way. When I first made the call to Montgomery County's Early Intervention, I was asked whether or not I wanted to sign. At the time, I didn't know not-signing was an option. I just assumed that all deaf people signed. We all remember Linda from Sesame Street, right? When presented with the question, I did ask for some clarification, and the woman gave me brief descriptions of the programs at Clarke and at PSD. I remember jotting down in my notes that she seemed to be nudging me towards Clarke. But still by the end of that conversation I couldn't fathom a reality of not-signing.

When we began our Early Intervention with a teacher of the deaf from PSD, one of the first things she did was to make sure we truly understood all our options. We had a tour of Clarke [oral school], of PSD. She gave us things to read. We really felt like we could ask her anything and make any decision we felt comfortable making.

4. When and how did you come to a decision of what communication option(s) you were going to use and do you believe you had access to qualified professionals in your choice of communication?

From the first day when hearing loss was even brought to the table, our commitment to Ellis has been that he have as much access to everything that might help him. We learned that if he is to have 100% access, that ASL must be available to him, and that he must continue to learn it as well as we would expect a hearing kid to speak. But we also want to give him the benefit of a cochlear implant. His right ear was implanted when he was 2yo and speech therapy and a high auditory access classroom at PSD are part of his IEP, in addition to instruction in ASL. In order to be truly bilingual, he must be allowed to develop to the maximum of his potential in BOTH languages. So that he may easily choose how he moves through his adult life. For us, we felt like we were limiting his life choices if we chose only one mode of communication. In our house, learning another language is par for the course, and ASL is no different.

I do think we were given excellent resources and opportunities. The Mont Co EI and then preschool division bent over backwards to make sure we had just the IFSP/IEP we needed for our bilingual approach. Even though it was a little outside the box for them. PSD also offered us a lot of extra opportunities that weren't "on the books," such as a Deaf Mentor program and the shared reading Program, where a Deaf adult would come into our home and help us learn how to read children's books to Ellis in ASL.

5. As parents of children who are deaf or hard of hearing, we need to learn quickly how to embed language learning into our home environments. What tools/skills did you and your family learn during the early intervention years to support your child’s language learning at home and in their community?

ASL was crucial. Ellis didn't get a CI until he was 2yo. Before then the hearing aid he had didn't give him an language benefit. If we hadn't signed, he would've had no access to language in those crucial 2 years. Because of signing, we have seamless communication if the technology fails. There was actually a time when the processor on his CI and his backup CI both failed simultaneously. It was crazy and it took a long time to figure out. And then they have extra time getting a replacement with a processor, because it has to be programmed.

It's great to have more than one modality for language if technology fails. There is always language, be it ASL or spoken English. We never lose. It's always win. Language is the goal.

6. Please share with us any advise you believe would be helpful to another family who will be on this journey after you.

Another mother brought up the good point, that it's up to the parent to be an expert in everything at the IEP meeting. To really understand what's going on so as to be a good advocate for the child. And then I thought one step further, it's great to do this for the sake of your child. And hopefully it will show them how they can gradually take ownership of their own advocacy, so that they can stand up for what they need.

But we brought to the table to answer this question was this: Talk to Deaf adults. They're lovely people, and they want to tell you that being Deaf doesn't limit them from doing the things they want to do. They want to show that being deaf isn't scary. No matter which mode of communication of avenue of education you choose, there will always be deaf adults on the other side. Talk to them. They will give you a more wholistic picture of your child than just the speech banana your audiologist gives.

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.

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.)

See my boy's bright blue eyes? They're perfect. We had this confirmed today by an ophthamalogist. An appointment that I've been putting off for three years. When he was born deaf for no obvious reason (family history, illness, etc), there was a list of tests we were supposed to get done to rule out: an EKG, a urinalysis (for the kidneys), a MRI, an eye exam, genetic consultation. Well, we did it all except for the eye exam. There are some conditions that affect both sight and hearing. He never had trouble seeing, and I kept putting it off. I made the appt a few times, but had to cancel for some reason or other.

But then this little thing came my way that made it impossible for me to put off any longer: the school form. So we made the appointment and this morning traipsed on down to CHOP. Ellis did very well. He was a little nervous at first, but overall enjoyed getting his eyes examined by a cool light much more than, say, the hearing booth, for instance. And the dilation didn't seem to bother him too much either.

We are all tired, though, and came home a cranky lot. A few last minute things to do before we can enjoy the next couple of days. Some things will be put off until next week, like that trip to the post office that was scheduled for last week while I lay in bed with strep. *sigh* We're looking forward to a fun, relaxing time enjoying our families.

...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.

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.

Ellis's CI was activated.

I hope to write more later.

A year ago today was Ellis's CI surgery. It's been a busy year, and we're starting to find our pace with it. It's hard to think about it too much, though...the surgery, that is, so I won't. I can't believe it's been a year already.

It's probably about time to do another update on how fantastic Ellis is *grin*. I was kind of on hiatus from all deaf blogging for a little while. The comments were starting to get too intense for me, which, to some extent, I allow to happen merely by posting on the world wide web. whatever. Lots of fun things to write about today.

On the CI front, Ellis is making excellent progress. He's just over three months since activation. We still don't have speech therapy with our county straightened out (my current pain in the neck), so we still go to CHOP (the hospital), which is cool, because I heart our speech therapist. And I will probably continue with her as long as possible, even if the stupid county sorts itself out.*

So, to make this totally pedantic. Words (or rather phonemes, in most cases) Ellis says consistently with meaning:
Aaah (for airplane),
Ooo (for "choo"/train),
bye-bye,
Oh (for the letter O, "open", "no", "go", and "home"),
Eee (for the letter "E" and "please),
Mmm (for "more"--and usually nestled in a variety of vowel combinations)
And he is saying "p" very well in the past few days, which is great. It's kind of hard, its being a silent plosive and all.
Lately he's also blowing silently for "s" and "sh". It's in there somewhere.
"B"/'buh' is still sort of default phoneme for whatever word he happens to be trying to say.

He doesn't really babble. They say the newly activated CI kids will go through a babbling process like babies do. But he doesn't really. He's trying to say real things. When he's playing and I'm narrating his world, he tries to copy what we're saying, which we were doing (still do) in sign, as well. Like if I say, "do you want some juice?" he'll say "Oooo" for "juice". And he incorporates his few words/phonemes into his play, saying 'bye-bye' to his toy car, making things fly "aaah", and begging to ride the train, "Ooooo".

The other day, I was sitting behind him, and I said "let's put on your shoes!" and he turned around and said "Ooo" and signed "train"--making the connection between the "ooo" sound in "shoe" and "choo". He's responding to sounds/his name pretty consistently, too. He sometimes will even come if I call from another room. And he will respond to "invisible" sounds, that have no immediate visual connection, like a noisy truck outside a block away. I'm so glad that we have sign, because I can tell him what he's hearing in a language he already understands. I can explain by speaking, too, but it's not going to have the same meaning this early in the auditory game.

The other cool thing is that he's making the separation between English and ASL. He either says it OR he signs it. He doesn't really do both, at least not after he's solidly got the word in his mouth. Sometimes he says it and then will sign it, but for the most part he keeps it separate. I think this is really cool, because it is classic bilingual skills.

The CI aside, though, it's fun to see him develop so much in his language skills. For instance, he is currently obsessed with the alphabet. Actually obsessed is understatement. He practically signs letters in his sleep!! Since about 20 months old, he's shown interest in the letters. (thanks to the ASL alphabet placemat that Chris's aunt got him. Thumbs up!!) At first, he only paid attention to some of the handshapes, and as he developed the dexterity to do more of them, he learned more of them. (The letter "Y" and "I" are particularly difficult for little hands.) It's funny, because he wouldn't sign the "Y" handshape words (like "play" or "telephone") until he made some deliberate approximation of the actual handshape.

Anyway, now he's made the connection between the English letter and the ASL handshape. And he never stops!!!! Every sign we have to spell out. All his books. Letters everywhere!!! He won't just draw anymore, he makes us write letters. He even tries to write letters by making tiny strokes on the paper and then signing to us which letter it apparently is. He even thinks numbers are letters, like "3" is "E", "4" is "A". Shapes are letters! (A triangle is "A", a circle is "O".) He now has a nice border around his room of the ASL/English letters. He loves it. Now if only we could get lower case.... Naturally, I'm thrilled at the first stage of literacy.

Ellis is doing a lot better in his adjustment to his 2yo preschool/playgroup class at PSD. He doesn't cry his head off when I leave anymore. He looks a little sad, but is usually happy to go in and play with his best friend.

This is a huge relief to me. Because I was having major separation anxiety. heh, heh. I'm really happy for him to be there. We want him at PSD next year, too, for the start of Official Preschool. I have no idea beyond that. Our plan is to take it year by year. Somehow, though, we want PSD to always be in the equation somewhere. It's really important for him to have Deaf friends and a consistent place in his social life in the Deaf community.

The bilingual step is a delicate dance.

* Speaking of stupid county. We had E's annual review for his IFSP (Individualized Family Service Plan) a few weeks ago. SIX people in our living room!!! The county coordinator, a person from the agency that pays for it, E's teacher of the deaf from PSD, our Deaf mentor from PSD, an ASL interpreter from PSD, and an educational consultant from CHOP (to help us sort out this speech therapy nightmare). Ellis blithely playing with his train in the middle of the floor. All this for a 2yo! Since he'll be 3 next summer, we also have start thinking about transitioning for the IEP (Individualized Education Plan). I'm so not looking forward to that process.