Follow by Email

Monday, April 14, 2014

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.


Tuesday, April 1, 2014

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.

Thursday, March 20, 2014

Autism Madlibs



I originally wrote this for Childswork last year, but wanted to share it again over here since it's not time-sensitive or anything and, MADLIBS!
--------------------

As a parent of an autistic child, some time after diagnosis, but before you actually know ANYTHING about autism, you will undergo a slow realization period, wherein you will become inundated with facts and figures, theories, stories and various and sundry apocrypha. During that immersive discovery period, various autism parenting cliches will surface and you will briefly (or maybe even not so briefly) latch onto them as they, at that moment seem to nail your experience. You’ll find yourself nodding your head in solidarity with these sentiments like a jilted lover listening to a country music station.

These cliches are important at first, if for no other reason than to help you frame your child’s experience through someone else’s words, someone who seems more travel-worn and more autism-worldly than perhaps you feel. They make you feel like “someone gets me!” and that’s great, especially at first. But ultimately, as you start your unique journey parenting an autistic child, you find that each cliche eventually collapses under the accumulated weight of the arguments against it; whatever its merits, it also has its deficits, and although it helped frame your world for a time, it framed it incompletely. Except the cliches don’t. go. away. Some are tender and touching and more or less true. Some are broad and general and definitive and somewhat apply, but none of them are particularly ‘helpful’ in any practical sense, and at some point you’ve got to stop reading so many blogs and go raise your kids or go live your life. (But don’t stop reading this blog. Always read this blog.)

Every day someone is asking you if you’ve read the marvelous essay that compares your journey, or your son or daughter’s journey to an unplanned trip to some tulip filled flood plain. Or whether you’ve seen Rain Man. Or if your child can calculate pi to the 100th decimal. Or whether you’ve tried sporn flushing to cure his ‘awful affliction’. And so you trot out the cliches. And the more you trot them out, the more they make you cringe, but perhaps you cringe less than you might if you had to explain it all in your own freshly-minted words every time. Unless…

Try Autism Madlibs. You fill in a noun, adjective or verb, as requested, then plug them into some old, tried and true autism cliches to spring on your friends and family. It’s fun for you, and …AND instructive. It’s useful brain calisthenics to attempt to draw a parallel between your experience and a bunch of random parts of speech. It will amuse you, instruct you, and bamboozle your friends. Win. Win. Win.

Let’s get started. First you need to print out the mad lib sheet. Click the picture below, print it out, and fill in the blanks. Once this is complete you can insert them into some common autism cliches that I’ll supply at the end of the post. If you print the whole post out it won’t really work, because you’ll see the expressions and that’s cheating.

autism mad lib
the list…print it out and fill in the blanks
Did you get them all filled in? If you haven’t done a mad lib, now you read the blanks with the parts of speech you supplied in the sentences previded below out loud. Hilarity ensues.

blank autism madlib
Insert the parts into this here handy blank sheet and VOILA! Pithy new cliches everyone can easily understand!  I’ve taken the liberty of filling out a couple of the cliches myself, so that you can see how this is supposed to work.  I randomly picked numbers 3 and 4…

Autism is a pretzel.

Autism is like a purple giraffe to Cairo.

The benefit to you is a straight-faced delivery of either of these AND as much thought as you can put into the explanation. Remember…this is mental weight lifting for you. Entertainment, Betterment. Win, win.

3. Why yes, Ted, that’s exactly what I said, parenting a child with autism is a pretzel. You see…the twists and turns of the discovery process of diagnosis and all the visits to specialist had us tied in knots. I can’t MENTION the sort of salty language that I used during those trying times, it left me…crunchy, hardened from the experience. Autism is a pretzel. A hard crunchy salt covered pretzel twist.

And if Ted says, “But what about warm soft pretzels?”
Then you give Ted a long-suffering stare and say, “Ted, you don’t know anything about autism, do you? Autism is nothing like warm, soft pretzels.”

Autism is like a purple giraffe to Cairo
4. Well, Aunt Margaret, what’s the absolute last thing you’d take to Cairo? A giraffe, right? And that’s how unexpected this all was. And it’s a war zone, make no mistake. Much like Cairo, there are constant battles to be fought and treaties to be negotiated with the school, and with day care, and the bruises as we worked through Billy’s biting/slapping issues…well that’s the purple you see on the giraffe. See? It’s right there.

And if Aunt Margaret replies, “Well what about Northern Ireland? That’s sort of a war zone too?”

Well then you look at Aunt Margaret with all the scorn you can muster and say, “They speak English in Northern Ireland…Billy is non-verbal…we have to learn to communicate with him in different ways. Haven’t you been listening?? Northern Ireland is nothing like parenting an autistic child.”

Under the frivolity is a simple truth (and ironically, another cliche): your journey parenting your autistic child is unique and cliche-defying. And the result of the simple, frivolous brain exercise of forcing yourself to frame your own experience in random terms such that they make sense to you is something that no two people will duplicate. There is no “right answer”. There is no cliche powerful enough to encompass all our complexities and challenges.

Nevertheless, have fun, and mad lib responsibly…make sure you leave your favorite (along with your explanation) in the comments!

If you’re unfamiliar with the cliches from which I derived the mad lib, see below. They all have something to offer, outright blunt obvious truth…one person’s philosophy…or deep thoughts on the meaning of it all.

1. If you’ve met one child with autism, you’ve met one child with autism.
2. Real autism isn’t like Rain Man.
3. Autism is a puzzle
4. Autism is like an unplanned trip to Holland
5. There is no cure for Autism. There is only acceptance.
6. Autism is different, not less.
7. Autism doesn’t define my child.
8. Your autism is not like my child’s autism.
9. Having autism is like living on the wrong planet
10. Autism is a blessing in disguise.