Language!

Leslie and I took half a day off on Monday to go see Lily's magical autism doctor.  For those of you who don't know what that is, it's a doctor who specializes in autism.  He manages her autism diagnosis/care/therapy, and we have a pediatrician who handles everything else.  Anyway, he's "busy".  I think at one point he indicated in conversation that he has 30,000 patients.  So it's hard to get in.

He talks fast and rattles off about a thousand different studies that he's reading, participating in, evaluating, etc.  Back in December when Leslie and I were dealing with a medical issue of hers, we had to postpone our appointment with him just for sanity's sake.  It got pushed to April.  That was the first available date.

It's a pain in the ass to schedule and a pain in the ass to attend, because we both end up having to take a day, or half day off in order to see him.

So Monday came, and Leslie and I pulled into the parking lot at Lily's school and I let Leslie out to go get Lily.  It was raining softly, and I didn't want to wreck my hair.  It took longer than I thought it should have, and I started clock-watching because I wasn't sure how traffic would be heading back into Pittsburgh.  A minute or two later, they came out hand-in-hand.  Lily looked happy enough.  Leslie helped her up into the mini van and strapped her in.  I turned the music on while Leslie programmed the address into her phone's GPS.


I cranked the steering wheel around and performed an illegal u-turn to head back the way we'd come, off in the general direction that Siri's insistent voice suggested.

Sotto voce, Leslie said to me, "I had a tough time getting her out of there."
I raised an eyebrow, "Why?"
"She didn't want to go."
"Didn't want to go to the doctor?  Or didn't want to leave school?"
"She didn't want to leave school.  She said, 'No, I want to stay at school, dammit!'"
"Huh?  Dammit?"
"Yeah."

There was a pause in the conversation.  Lily was quiet and well-behaved in her seat, staring uncharacteristically out the window.  Echoing nothing.  Scripting nothing.  Tired-seeming.

"I blame you," I finally offered.  Leslie rolled her eyes.  Later I would blame the school for adding "Teach Lily to swear" to her IEP goals in a Facebook post that more than a couple people thought was me seriously believing that the school was teaching her to swear.

Post by Just a Lil Blog.

We got to the appointment 5 minutes early.  It was perfect timing, honestly.  We parked the car and walked into the building, filling out visitors stickers and smoothing them over our shirts as we distractedly walked to the stairs leading down to the Doctor's office.

Lily and I found some books and sat down while Leslie signed us in.  She joined us.  Lily asked for fruit snacks and Leslie peeled open a plastic bag of them, handing them to her one at a time. 

"Ma'am?" the woman at the reception desk voiced, getting our attention, "Could we speak to you for a moment?"

Leslie handed the bag to me and I finished giving them to Lily.  From the corner of my eye I observed the exchange.  There was a burning sensation in my chest and I felt stress and frustration begin to blossom.

After a few minutes Leslie came back to explain the conversation that I'd guessed.  They didn't have us on the schedule.  They had us a month and a day later, May 29th.  Not April 28th.  


"What?" I asked.  "Dammit!" (this didn't actually happen, but makes the story funnier)

When we eventually got back home Leslie found the note she'd written from the phone call postponing the visit, "Monday, April 28th," it said.  Not April 28th.  MONDAY, April 28th.  May 29th is a Thursday.  They fucked it up.  But what could we do? 

On the way back home Lily fell asleep in the car.  She doesn't do that often, but I'm always amazed at how bendy kids are when they're little, and how their heads can be facing almost 180 degrees from their necks and it's somehow "relaxing" but if I hold my head at a 45 degree angle I'm sore for two weeks.

We got home.  It really wasn't that big a deal.  A wasted day maybe, but it was fine. 

Anyway...possibly time to reinstitute the $1/swear jar that is sitting idle atop the refrigerator.  :)

Random breakfast picture from Sunday when I fed her jelly beans and popsicles.  Because parenting.

Woot! It's Easter!

We attended Easter Mass.  It occurred to me that so much of what the priest was saying was made less accessible to younger church goers (Emma and Lily, for example) because of the language he was using.  Some of the language is so rooted in tradition and rite that I'm sure it can't be trifled with lightly.  And so I understand why they stick with it so doggedly. 

But at the same time, the church (Catholic church, mind you) just changed a lot of the responses during the ceremony, and my wife, for example, who has been catholic all her life, can no longer remember what she's supposed to say in response to certain things the priest says during the Mass.  Hell, even I used to know the right words. But those words are apparently no longer the "right" ones. And I wonder sometimes if the church really believes that there are "right" or "wrong" words in response, and if the new words are somehow more holy than the old ones were.

It makes me think too about how long the old responses were the "right" ones and what new data came to light that suggested the new words were..."holier" or something.  And I can't think of any new Jesus sightings, so I assume they unearthed some new scripture that was lost or translated some hitherto unknown scroll or something. And now instead of saying, "and also with you" we should say “and with your spirit." And other things.

So all of that seems stupid and nonsensical to me as a non-religiousy person.  And I get (having read about it) that it’s something with the translation that was bugging people for a while and now they’re suggesting it be interpreted in this new way that they feel is more in keeping with the intent of the translation, but I also have no doubt that someone will have a problem with this new way and it will change again at some future date.

Anyway, quite apart from the changing responses, which the church seems to do every couple decades...there are just some old, antiquated words that are used, and they're sorta meaningless to a kid like Emma and certainly to Lily (although Lily was saying it nonstop through church)

and so every time the priest would say Alleluia, I would automatically think in my head, "Woot".

And that got me started thinking about translating everything the priest said into more modern speech which essentially rendered everything he said unintelligible to my brain because I was so busy translating to "kid-speak" that I wasn’t really paying attention to what he was saying, which again, is the problem with using archaic speech to preach gospel to kids.  Cause they have no idea what the fuck you’re on about.  Rebirth = Godmode, conquered death = leveled up, alleluia = woot and so on.

I remember also thinking that the rejoicing was atypically somber when I started paying attention to the music during one of the responsorial hymns that said something to the effect of “let us rejoice” to the tune of the slowest most funereal dirge you can conceive.  “Rejoicing:  You’re doing it wrong.”

The priest did the baptismal wet t-shirt contest thing again, but failed to hit  me with even one drop of holy water, which took the whole “It burns! It burns!!” wind right out of my sails because I was getting ready to say it and the next thing I knew he was gone and I was still dry.  But maybe that’s a sign or something.

After the service, while we were together as a family cooking brunch, my sister mentioned how it’s apparent that we take Lily to church a lot, because of how good she was (she really was) and because of how much she participated in the songs and how she even knew some of the words, which my dad also commented on later.  And essentially, Lily echoes stuff a split second after she hears it.  She does it a lot when she watches TV.  I don’t know how she keeps her speech straight because she’s saying the stuff they JUST FINISHED SAYING as they say new stuff…and she follows that as well.  It is really difficult to listen to and make sense of, but often she’s so close to saying what they are saying that it gives the appearance of her saying it with them.  But it was nice, because Lily was saying Alleluia (woot) appropriately (it sounds more like aw-way-woo-ya, but it’s cute as the Dickens) and so we all sort of appeared to fit right into the church service.

We had our traditional Easter Brunch at my sister’s house with mimosas, bacon, sausage, hashbrowns, eggs (deviled, hard-boiled, and scrambled), fruit and sticky buns, and after a few hours I got sleepier and sleepier and sleepier until we finally packed up and drove home.  Leslie drove.

This morning while we were getting ready Leslie remarked, “I should have stopped after that first mimosa” to which I replied, “I should have stopped after my third,” which goes a long way toward explaining the stupor I found myself in for the rest of the afternoon.

Anyway…good Easter celebration all-in-all.

Step by Step

Yes, I'm still talking about Lily's walk.  The website sucks.  It works though, and so I figure perhaps with additional instruction, I can take some of the confusion out of registering for and joining, "Just a Lil Team". 

Previously I gave you the link to the page, but here it is again, Join Just a Lil Team.

Here is a step by step guide to what you will then encounter.  One of the biggest sources of confusion is that in past years it was very apparent once you clicked that link that you were joining the team and walking for ABOARD.  This year there's a loooooooot of clicking and entering to do before you ever see confirmation.


So clicking the above link takes you here:

You're on the team page, so it seems like you're joining the team when you click "Join Team", and you are.  But the next few pages make you start to second guess yourself.

Join as a New Participant.  I tried entering as a "Returning User"...you know...cause I was a user the previous two years?  Yeah, I guess not.

You can pick Walker or Virtual Walker.  I don't know if there's a minimum goal amount for a virtual walker, but there IS for a Walker.  It's $10.  I don't know why they're doing that this year.  I want to say that you have to go higher...like $25 or something if you want a Highmark tshirt, but don't quote me on that.  Click next step.

That form is pretty self explanatory.

Blah blah blah, terms and conditions apply, Next Step

You can either complete your registration, or register another person.  You're almost done.

You're there.  Finally tells you who your money benefits.  There's still no indication that you're on the team, but when you find the team link, you should see your name listed.  If not, please shoot me an email at blogginglily@gmail.com and I'll touch base with ABOARD or whomever, and get it straightened out.

Just a Lil Walk III: Rise of the Lily

It's that time of year once more.  I'm inviting friends and family to participate in Highmark's, "Walk for a Healthy Community" with us again this year. "Just a Lil Team" will once again be marching for Autism Connection of PA (aka ABOARD).  The beauty of the walk is that 100% of the donations go to the charity. 


Three years ago around September, when this blog was newer and greener, I broadcast a plea for help to the autism community at large and asked this question, "To whom should I donate my money if I want it to benefit autistic people and their families and caregivers?" That post is >>HERE<<. If you're getting this message via snail mail, you can't click the >>HERE<<, so stop trying, you're just tearing the paper.  If you're getting this message and can click, but refuse, I'll summarize it:  

Anyone who was autistic said, "Don't give money to Autism Speaks".  There were a lot of reasons, and most of them were good.  The consensus was, "give to someone who can help autistic people locally, or give to food banks or shelters", because the sad fact of life is that many autistic people not receiving supports or services are the people in the homeless shelters and benefiting from the food banks.  I'm paraphrasing the masses (it was not a particularly well-commented blog post of mine, but linking from post to post by others who had covered the topic, that was the message I got).  One local autistic adult mentioned ABOARD.  They had helped her personally.  I had attended a couple workshops they had put together with my wife, and had previously donated to them.  They're the folks who put together the Autism Friendly Santa Visit at the mall, (they did one for the Easter Bunny too, but we didn't go).

Since then we've gone to many of their sponsored events:
autism-friendly:

• days at an indoor playground

• Santa

• Trips to see the Pirates play

• Nutcracker Ballet

• Lion King

• Art March

• Gala

• Symposium (in the Spring)

• Grandparent seminars

And these are just the things our family has attended.  They've become our personal pet Autism Charity.  We're forming a team again this year, "Just a Lil Team", and using Lily as our rallying point.  This is a cause that's important to her, or will be some day when she's able to take it up herself.

We'd love for you to join our team and walk with us on Saturday, May 17, 2014, at Stage AE on the North Shore in Pittsburgh, PA.  (Registration is at 7:45 a.m., walks start at 9:00 and 9:15 a.m. if last year is any indication). OR...OR...you can sign up as a virtual walker.  You don't have to be WITH us...to be with us.  If that makes sense.

The Highmark page is different this year, so I don't have it linked like I did in the past.  Right now all I have is a URL, which is Team Page URL:  http://hcf.convio.net/site/TR/Pittsburgh/General?team_id=1918&pg=team&fr_id=1110. If you click that it should take you to the page.  I'll also link the event to the Just a Lil Blog Facebook page. I'm looking for sponsors (essentially if I can get someone to sponsor the team, I can get shirts for the participants, provided I have a head count two weeks before the walk) and I've set a goal of $2,500.  I feel bad about setting the same target as last year, but we're getting a late start and I don't want to freak out if I can't hit the goal.  Regardless I hope we beat it.

Lily and Emma and Leslie and I will be down by the stadium at Stage AE on May 17th to walk. Whether we raise the $50 or $2500 or $10,000, we'll be there, and we'll have fun. And we'd love it if you could join us, or if you can't, if you could donate to the cause.

We have about a month to put together what we can sponsor/donation/team-wise so that I can get tshirts made for participants and make sure we get them in time for the walk. (last year we did it five weeks in advance).  This still leaves us a couple weeks to get donations, but after about the first week of May, we won't be able to change the tshirt orders.

Thanks,
Just a Lil Walk Team (Jim, Leslie, Emma and Lily. . . so far)

Last year's shirt.  This year will be different.

We need sponsors for team t-shirts (last year that ended up being right around $600 for 50+  shirts.  I'm considering adding the autism/bacon/tragedy meme to the back of the shirt since that seems so popular, and leaving the front as currently designed.  The shirts will not be blue (as they were the first year we did it) or purple (the second year).  I know they will NOT be black (the tshirt guy says he has to double on the white paint to make it show up right on black.  Maybe gray...Not sure...entertaining options.

STEP BY STEP TUTORIAL HERE!!