ASL

I guess I spoke to soon.

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

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

Hooray!! That makes me so happy!

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

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

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

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

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.

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!

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?

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

Ellis's perspective: SNOW!

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.