We all have them. The ornaments we made in school when we were little kids. I think mine was made of pipe cleaners and beads; it was supposed to be a wreath.

Ellis came home with probably the best school ornament ever. The ILY glove--a little handing signing "i love you." Yes, it is proudly displayed on my tree!

Ellis runs ahead of me in all his four-year-old boy vivacity. As I lumber along with the baby on my back, lugging our little bag full of snacks and water bottles, I watch him, waiting for the moment, just before he disappears around the corner, when he'll turn around and make eye contact. I wave him down signing WAIT FOR MOMMY! but he's already plopped down on the park bench and signs WAIT. As I get close, up he pops again, and I watch the back of his head bounce, jump, and dash along.

Cut to later. Ellis is picking up his fifteen-month-old brother. Again. He adores his brother, but sometimes his love is a bit too lavish. I kneel down, fully intending to affirm his love, but to talk with him about more appropriate ways to express it, while firmly prying his arms away from the baby, who is screaming his head off. Ellis drops to the ground, flailing and squeezing his eyes shut.

Four years ago, when we learned that our brand new baby was born profoundly deaf, we knew our experience as parents would be different. We got a kick out of being able to vacuum in the same room as a sleeping baby. We cheered at his vocabulary of ASL at such a young age. We stomped the floor to get his attention.

However, I feel like it's only been this year that I've really begun to get a glimpse at what it means for Ellis to be deaf, and deaf in our hearing family. I've started to see how he settles himself socially. Personally, I'm starting to see the particular ways I fall short as a parent. True, nobody is a perfect parent, but I'm speaking of the ways in which I struggle as a Hearing Parent of a Deaf Kid.

The primary aspect of this unique experience is communication. We are settling into the bilingual dance between spoken English and ASL. Two years ago Ellis got a CI. He's doing pretty well with it, his receptive language is stronger than expressive. I can talk to him without signing through the simple aspects of our routine and that works out fine. He doesn't like to wear it at home. We don't press him to, but, I will admit, I may or may not have bribed him with chocolate milk to wear it at home sometimes. He wears it at school or usually any other time when we're not home. He is most comfortable with ASL, and that is the language we use with him primarily, even if we are speaking, too. This is especially true in discipline situations, where I need to use whatever language we have to its fullest, and since ASL is his preferred language, that is what I use.

From the beginning, we've pursued our education in ASL vigorously. We've taken classes, lived in the dictionary, had Deaf Mentors. But we are far from native signers. We get by. We can communicate fairly effectively with our four-year-old: we can read books in ASL and talk to him about the world around us.

I have found lately, though, that my ASL is starting to fail my parenting needs. It's taken me awhile to figure out what the matter is, because I know the signs and how to use them, but somehow I'm failing to communicate. I think there is a Deaf presence that I don't have. I'm not really sure how to describe it. A way of using my body that transcends the actual signs, that enters into his space, meets it, communicates with it. Connection is a key part of my parenting philosophy and to be so defeated by the basic communication that I need to make it happen is beyond frustrating. It has deeply discouraged me in these past few months especially.

It's not all a total big Fail. We do get along, after all. We do connect. I give him as much physical presence as I can. I give him as much language as I can. And we are a happy family. But sometimes I look at my hearing friends with their hearing kids--parents and children who speak the same native language--and wonder at the ease of it all. To just talk, effortlessly.

He shuts his eyes. Bam. Communication stops. He glances away from me, focusing back to his play. Communication stops. Sure, he might pick up more than I think peripherally. But it is unnerving to have the eye contact lost. The conversation could just be small talk about his play, but it is lost mid-sentence. Is my signing that weak? Do I not have the persona to indicate that I'm talking to you? Ellis seems to think that I can only hear him if I'm looking at him. He screams my name while I am driving until I glance back giving him the visual acknowledgment that I hear him. (Dang! We need a mirror!) He also thinks that if I don't acknowledge him the split second he says my name that I must not hear him, so he repeats it at blood-curdling volumes, until I can turn to him. I'm rambling a little. This summer has been a roller-coaster. My nerves feel shot from his screaming my name, though it's getting a little better.

He's changing socially. We were at a birthday party with all hearing kids, kids he's known since infancy. Another guest, another little boy, ran up to Ellis, hi! what's your name? Ellis didn't know what he said. How much do I step in to intervene? Do I translate for E? Let it go and watch him slip into isolated play? Do I go through the conversation for the bazillionth time? oh, hi. His name is Ellis. He can't hear you, so we talk with our hands. can you say 'hi' like this? Some kids get into it. Some feel awkward and back away. Bless the little British kid at the park the other day who made fast friends with E despite his curious quality.

How do I balance it all? As a mother I want to protect him from all this. I want to make a world that fits him perfectly. I don't want to have to teach him how to negotiate through languages and worlds. I wish I had more to offer him. Yet at the same time, he's doing a pretty good job. Sometimes, I just have to stop and let go. Let him run ahead, trusting that he'll turn around. After all, I am not in control. The God who gave me Ellis also has Ellis perfectly in His arms.

Yesterday was the first day of the new school year for Ellis. Since we've been involved with school since his first year (early intervention), it seems old hat to us now, even though he is only four. But he moves up to a new classroom. He's in the class with the kids with the most auditory access. And yesterday he came home signing so much. I think we all missed school.

I'll admit, it's been a rough couple of weeks. Not always knowing what to do with my super creative, active boys. I feel the language gap so strongly sometimes. My ASL can barely keep up with my parenting needs. School gives all a little more structure to our day, outlet for creativity, satisfies Ellis's social needs that I can't satisfy, and a few hours of peace at home. I actually *gasp* got the living room clean with no other major household disasters yesterday. It was awesome.

And so my brilliant, confidant, sweet boy ventures forth on another year!

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!

Ellis's birthday was yesterday, but basically he's been celebrating his birthday for the past three weeks. I explained to him that first, it was Marlowe's birthday, then his, then Daddy's (whose bday is in a couple of weeks). As soon as M's birthday was over three weeks ago (they are exactly three weeks apart), it has been E's birthday. This past weekend was the real party, though.

Saturday was birhtday party day. This is the first year that Ellis has truly grasped the anticipation of his birthday. After he went to bed on Friday night, I decorated the kitchen and set the table for his birthday breakfast. Marlowe woke me with plenty of time to prepare his chocolate chip pancakes before he woke up. So everything was perfect when he came out of his bedroom. Candles. Pancakes. Smoothies. It was like Christmas.

I found an album of his baby pictures and set that out for him. He loved looking at it. Pointing out all the pictures of baby Ellis. Finding the album was sort of an afterthought, but I thought it might be a fun tradition: birthday breakfast and looking at the baby pictures.

After breakfast we went over to the arboretum to say hello to the trains.

Then we went to Grammy's house for the big birthday. Grammy and Poppy gave Ellis his presents in the afternoon so that he could enjoy them for a little while. A watch and a bike. He looks so grown up!

We planned a fun party outdoors, but about 10 mins before the guests were due to arrive the low rumbling of thunder told us that it was time to move indoors. My optimism ran out. Thus began the most chaotic hour of my life. Kids. Screaming. Running. Inside. I suppose if I had had a clearer head, I could've done more constructive activities. But to be honest, I had been concentrating on optimism that it wouldn't rain. But then we ate and let them watch Tom and Jerry. Which turned out to be a good move, because then the adults could enjoy each other's company more. And the kids had a great time despite it all.

We had a few church friends over, kids Ellis has grown up with. But this year we invited a couple of school friends that he gets along well with. Both of these boys come from Deaf families, so we had a lot of fun hosting our first mixed Deaf/hearing party. As Ellis has gotten older, sometimes big parties overwhelm and he retreats to the basement. But with his Deaf friends, he was so much more vibrant. It's been amazing to watch him develop socially like this. How, at four years old, sharing a common bond of language is already so important.

On Monday, his actual birthday, I sent brownies to school. He came home wearing a Happy Birthday sticker on his shirt. And we took him out to eat for dinner. I am ready for birthday to be over. I think it'll take a little while for him to ease out of it. We may just end up with a summer of birthday.

Today Ellis is four!!!

We've been having Big Birthday Weekend. I'll write more about that soon.

I just can't believe how BIG Ellis has gotten. My little baby who was born a month early weighing six pounds, now is so big he wears 5T clothes.

He's a vibrant, steady boy. He has tremendous focus and likes to let information soak in. He loves to snuggle and bestows the family with the best hugs and kisses. He loves ABCs, counting, cars, monkeys, cooking, painting, and photography.

I love my boy so much. I pray that he will grow up to be a great man.

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.

I've gotten some fun movies of Ellis recently. These are taken roughly around eighteen moths post CI activation.

In the first, Ellis is fingerspelling the title to his bedtime story--and saying the letters as best he can (though he's not wearing his CI in this one, because he's going to bed). He loves to spell out the title of the books before we read them. Bedtime story is 98% of the time in ASL, because his CI is off for bed by that point. Every once in awhile, he wants it on. Anyway, he's just picked up the letters' spoken names, it's not something we've been working on in particular, though I'm sure they've done it some in school. We usually do say the letter when we sign it. Here is Ellis signing "A Pocket for Corduroy."

Ellis's favorite thing right now is counting. Here he is counting his cars with Daddy. I was trying to take the video surreptitiously, so sorry if it's not the clearest.

And, of course, what's a blog without a little politics? Hey, E, who's the new president?

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.)