Ellis

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.

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.

Mommy's perspective: A staggering cascade of sprinkles, which sends the cookie decorating venture up to carnage status.

Ellis's perspective: SNOW!

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.

Some days I can't Ellis out the door fast enough. I hear the school van beep his arrival, and I am all about getting that three-year-old OUTTA here!!! They say he's much better behaved at school. I guess he knows who has to love him unconditionally.

There are other days, though, when it breaks my heart to say goodbye to my little boy. I felt like crying as I waved goodbye to him this morning. As much as he loves school, I think he was a little sad to go, too. I had kept him home yesterday, because I was hosting playgroup, and he had been kind of tired. So the combination of friends and extra rest won over. It was a glimpse into what our other life could've been. The life where Ellis didn't go to preschool fulltime when he turned three. I'll pick him up early today. We have speech therapy in the afternoon.

Ellis's ASL has been blossoming. I want to write a whole other post about it. For now, though, when the "bus" got here this morning, we peeked out the window at it and I signed that the bus was here and we better get our coats on fast! He looked at me and for the first time signed van instead of bus. Both van and bus are fingerspelled, so what he really signed was something-something-n, like with bus, it's b-something-s. With something equalling some kind of gibberish imitating the quick movements of fingerspelling.

It's been a busy week.

First, my good buddy who moved away came back for a visit. Yay!

Then, it seems that I must traverse all over the city and its environs this week.
On Wednesday I had a quick visit with the midwife (follow up on some birth control options, if you must know). I bother to even mention this little visit, because I met a new midwife at the birth center and she was so awesome that it made me want to have another baby just so I could see her again. In the afternoon, I went to my friend's house for playgroup. I've felt weird about going without Ellis who is in school. But Marlowe deserves to play with other babies, too. On Wednesday evening I went to CHOP for a presentation about bilateral cochlear implants (two implants--one for each ear). We're not interested in getting a second one, but the CI team had just been through a time of study, and i wanted to hear what they had to say. (So I've gone from Bryn Mawr to NW Philly to home to University City.)

On Thursday I went to a signing class at the school. The teacher was our first deaf mentor and is a really terrific ASL teacher. The material itself I already knew, but it is so helpful to actually practice conversation, because that is where I have trouble. I struggle with my ASL receptive skills. After class I tromped through the rain to the fabric store. Then there was speech therapy in the afternoon. After which my brother met us and we went to Target. (So I've gone from Germantown to University City to Jenkintown to home.)

Then on Friday, I kept Ellis home, so that we could go to Lancaster. We made a stop off to visit my grandma who is feeling very blah. The kids cheered her up a little, but it was kind of a difficult visit. I had a hard time thinking of what to say. We spent the rest of the day at my parents' house. My brother came over for a little bit and took Ellis to his house for a couple of hours. Ellis was over the moon with joy about driving away with Uncle Nick.

Today we had deep clean day. I wanted to have a huge deep clean, declutter day before the holidays. It's still not where I want it, but significant progress was made. I even got the kids clothing situation squared away, which is big when you have a baby who grows out of his clothes every few months. I really wanted to get ahold of the toy situation before Christmas and to reorganize stuff now that Marlowe is mobile.

Oh yea, did I mention Marlowe will be crawling any day now. He scooches very deftly and quickly wherever he wants to go, and then gets up on his hands and knees and rocks, with a determined look on his face that says "I WILL crawl!" Very comical on his tiny 5 mo face. Thankfully, he's still easy to pick up and redirect, because he can pretty much get into anything in his reach that he wants.

Speaking of Marlowe, the magical baby who can get by with very short increments of sleep is saying "mommy! mommy!" in that special baby kind of way, "waaah!". Sorry this is kind of a boring post. My blog mojo is kind of off these days.