The Brochure

You should check out Lucas' Mommy's latest post:

http://lifewithlucasrc.blogspot.com/2009/06/my-brochure.html

Funny, poignant, and right on the money.

This and that....

First, the good stuff. We just got back yesterday from a week in Hunter, NY, visiting some of Neil's family. Ben was in peak form, showing off all of his vocal abilities for the very appreciative crowd.

When we were in Wisconsin, my mother gave him a huge pile of books left over from her teaching days (including the fantastic "If You Give a X a Y" series, e.g. "If You Give a Mouse a Cookie" -- Ben loves those). One of his favorites is a big book of Mother Goose nursery rhymes. He now has a bunch of them memorized. The one that gets the most air time runs as follows:

Father and Mother and Uncle John
Went to market one by one.
Father fell off, and Mother fell off,
But Uncle John went on and on.

Seriously, he won't stop saying this one. Impressive, adorable, and hilarious the first 2500 times, but I confess that it's finally losing its novelty. At some point one of his adoring fans changed it up a little, something like "Grandma and Grandpa and Uncle Stan went to market etc." Ben immediately took up that challenge, and has since composed many variations on the theme. Another favorite is this one:

Bat, bat, come under my hat,
I'll feed you a slice of bacon.
And if I bake I'll give you some cake
If I'm not mistaken.

He also offers up snatches of others when his mind is wandering. I was getting him out of the carseat at the grocery store today when he announced, "What a good boy am I!"

Now, the not so good. We went to a joint birthday party for two of Ben's friends today. The kiddy pool was filled, the sprinkler was going, it was toddler heaven. Ben has been swimming a few times already, and loves it. Of course, all the hearing equipment has to come off, and it never goes anywhere near the water. When it's just us and him, no problem -- we explain everything in advance, and we communicate pretty well even with the equipment off. But it was a little trickier today. The other kids could do some sprinkler time, then run off for food, play with toys, and come back to the sprinkler, with no transition. But you can't just slap thousands of dollars worth of hearing equipment on a dripping wet kid. You have to dry him off completely, change out of the wet swimsuit and swim diaper, put on regular clothes, put on the harness, insert the hearing aid, and power everything up. Which means you kind've commit to no more swimming for that day. Never mind the fact that this takes a good ten minutes indoors while the other kids are out frolicking in the yard, impatiently waiting on Ben before they can sing Happy Birthday and have cake.

And I have to admit that I felt a little bad about this. A little jealous, maybe. I was also concerned about the future. Ben seemed to have a pretty good time at the party, but he was very withdrawn and spent the entire time by himself or with us. Part of that may be his personality. But even the most gregarious toddler would have a hard time interacting with peers while he can't hear. Because of the circumstances, he was more clearly marked as Different. These are kids he sees at least once a week at playgroup, and they are used to him with his equipment -- they don't pay any attention to it. But today, he couldn't hear them, and this was suddenly confusing and disturbing; there were a few concerned looks and whispers. Is this how it's going to go? Will he learn to interact more as he gets older, or will he continue to withdraw into himself when the going gets rough?

I realize that part of why something like this hits me this way is that, frankly, we're spoiled. We've been very fortunate. He does so well with the CI that under almost all circumstances, he looks, acts, and talks just like a hearing kid (albeit with some strange objects clinging to his head). It's pretty rare that we really feel the weight of his deafness.

Wisconsin in Pictures

Ben and his Grampy at the Madison Zoo

Ben feeding me some pretzel as his Aunt Kathy looks on

Ben loves "big red barns" -- and we found one at a Madison playground!

Ben strikes a Jenson Button pose at the same playground.

On the beach in Milwaukee

Taking in the art scene along the Milwaukee Riverwalk

Checking out "The Bronze Fonze" along the Riverwalk

June already?!?

Here's what Ben did in May:

You can see several references to baby bamboo. By the 23rd, we had established Skype communication with Ben's paternal grandparents. Starting on the 24th you can see evidence of Ben's newfound love of watering cans. On the 18th, we had a memorable trip to the Buffalo zoo -- and I must say that I'm rather proud of my rendering of a giraffe and elephant. New shoes were purchased on the 6th. The 17th was the fateful day that Ben acquired scarlet fever while playing in the sandbox with friends (or so we figure). A red cross a week later signifies that we spent overmuch time in the ER waiting for a prescription for antibiotics to treat said fever. On the 30th, we drove through the night to Wisconsin (we just got back home yesterday). We did all sorts of fun things in Wisconsin -- more details to follow.

Scarlet Fever!

I kid you not -- Ben has scarlet fever. We found out a few days ago that one of his toddler friends (with whom he spent some quality time in the sandbox last Sunday) has it, so when Ben started breaking out in a rash yesterday, we knew what to look for on webmd.

And of course it would be Memorial Day weekend, so his pediatrician can't see him until Tuesday. I called her today and described everything, and she said that it did sound exactly like scarlet fever, but she couldn't diagnose and prescribe without seeing him. So she told us to take him to the ER. We did, and managed to spend more than three hours there altogether, but we walked away with a prescription for antibiotics. He should be good to go for daycare on Tuesday, and hopefully the various symptoms will abate over the next few days.

Benny pics

Nothing to say here, except that I love these pictures! The first one is at a local playground, and the second one is at the Buffalo zoo.

Wisconsin legislation

I have strong Wisconsin ties -- my sister and I were born there, even though we spent much our childhood elsewhere, and she and her family, and my parents, are all living there again now. So I'm very excited about the news that the Wisconsin legislature passed a bill requiring private insurance to pay for hearing aids and cochlear implants for children. I first heard about this a few weeks ago on cicircle. More recently I've learned that a group of Deaf protesters are going to try to persuade Governor Doyle to veto the legislation, on the premise that CIs are dangerous, expensive, and a threat to their cultural identity. Jodi has the article on her blog, as well as a link you can follow to send a letter to Doyle asking him to sign the bill.

Now, some of my nearest and dearest have libertarian leanings, and they have serious misgivings about this kind of government interference with the free market. I don't. (To the contrary, I have misgivings about something as vital and fundamental as access to health care being at the mercy of the free market.) Anyway, I encourage you to check out Jodi's blog and contact Governor Doyle.

You might be wondering what's so dangerous about CIs. Nothing, really. Okay, it's a piece of electronic gadgetry implanted into your skull, so there are inevitable attendant risks. But those risks are on the whole very very small. However, shamefully inaccurate myths continue to circulate in the Deaf community -- for example that CIs cause brain cancer (they don't).

Are they expensive? You betcha. The total costs of getting Ben implanted (pre-operative evaluation and testing, the device, the surgery, the hospital stay, follow-up mapping and evaluation, etc.) exceed $100K. Almost all of which was paid for by our insurance (albeit reluctantly). How do I feel about that? A touch guilty -- I want to apologize to my fellow NYS employees for the (almost negligible) effect this has on their premiums -- a cost to the public which is more than offset, incidentally, by long term savings in special education.

Are they a threat to Deaf culture? Only in the sense that people who receive CIs are less likely to join it, and less likely to learn ASL. Ben is deaf, and always will be. He may well choose to identify as Deaf at some point in his life, and if so all power to him. But it will be his free choice, one of many options, rather than the only viable option because of a lack of other communication modalities. I'm excited that he's learning some ASL, and I hope this will continue for a variety of reasons. Also, I will certainly expect him to be respectful of the Deaf community, just I would expect him to be respectful (to a point) of any group, regardless of the things said by their more extreme members about our family and the choices we have made. (Pick your favorite major religion for a suitable application of this principle.)