The Third Walk from the Sun

I feel bad/good about the walk, but really mostly good.  The only actual bad thing is that I lowered our goal amount because I wasn't feeling as tied into my network as I have in the past.  I haven't been blogging as much recently, and so I feel a little isolated from that community.  It's my own fault.  Facebook has become a big time drag...it's completely my fault...and being more tied into facebook does have its support/autism benefits, but this was just the down side.

The good parts were these...

1)  We made new tshirts this year.  I finally pulled the trigger on spending a little more for them, so the shirts are a nice light weight nano cotton like a higher quality tshirt you might buy for yourself, and navy (so they can go with about anything) and the bacon tragedy meme is on the back (which got a LOT of feedback from other walkers who saw it and read it).

My nephew wears it well

Sidebar:  My niece was walking.  A woman came up to her and complimented her on her shirt.  She said something to the effect of..."I like your shirt.  My nephew has autism and he also really loves bacon.  (long pause) I wonder if there's some sort of link there."  My niece sort of politely smiled and nodded and was laughing about the story later.  Seriously...almost everyone loves bacon.  There's no link.

2)  The shirts were sponsored by Bill Few Associates.  At the end of the sign up the sponsorship didn't completely cover the cost of the shirts, but that's sort of a good thing.  Because...

3)  We had a shitload of people walk with us.  I think it's great that people give.  I think it's great that the charity got a lot of money...but it's one thing to cut a check, and a step above that still to cut a check and then show up at 7:45 and walk three miles.  We ended up with 50+ walkers.  It's SO cool to see a wall of blue shirts with Lily's logo on them all walking together.  Love it.

Just A Lil Walk Team

4)  Meeting friends.  My friend Jennifer drove from Delaware to walk with us.  We talk on Facebook (see above "benefits of being more tied into facebook").  I walked with her and had a blast.

Jim and Jennifer

5)  Everyone seemed to have fun.  Lily loved seeing her friends from school.  Emma loved walking with hers as well.

A meeting of the minds.

Where Jace goes, Lily follows.

6)  The weather was nice.  It threatened rain several times, and it was brisk, but it stayed sunny and was quite comfortable for walking.

and finally...

7)  We hit our goal.  The goal was $2,500, and currently the charity shows that we're at $2,515.  I still have $75 worth of unsent checks for ABOARD, and a couple other possible donors who indicated they might contribute (you can still do that through the website) here.  So at least $2,590 to the charity.  I didn't think we'd get there.  This is down about a grand from last year, but like I said, I didn't expect as much as last year.  So we hit it.  Thanks everyone who contributed and walked and we'll see you all (hopefully) again next year.

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!!

The Lion King (Autism-Friendly-style)

This was big.

What was the big deal?  I don't know.  But it was.  It was a big deal.  You play back all the rejection in your mind...kicked out of church because your daughter is too loud in the balcony and the organist doesn't want to detract from Easter Mass, kicked out of the front of the auditorium where your daughter is watching her cousins in a talent show because the woman in front complains she's too loud and it's hurting her sons ears, told to quiet her down in a theater before the performance starts and that maybe a theater isn't the right place for her if she can't quiet down...all the little hurts that build into chronic anxiety and stress and a feeling of "she can't do that"..."she's not welcome there"..."what if people complain"...any time any new experience is contemplated.  If she "couldn't" do those things, how could she possibly attend a musical?

Musicals have protocols all their own, when to stand or clap figuring prominently among them, but chiefest of these always is remain quietly seated throughout.  And there's just no way that can happen with Lily.  Unless...unless someone put together a performance where the conventional protocols of musical theater were adapted...suspended...unless someone changed the way a musical's conventional performance was conducted.

And that is precisely what this was.  I don't know exactly how the Pittsburgh Cultural Trust got where they did with the Lion King.  I know that ABOARD worked with them, and I'd be speculating if I threw all the credit at ABOARD without knowing if other charities were involved...or if I threw all the credit at The Pittsburgh Cultural Trust for doing it not knowing how long or hard the charity(ies) had to work to make it happen. What I know is what I experienced.  What I know is what I can directly report.  If people want to know more of the details I'll ask around.  Or maybe they'll comment here.  You never know.  This post is just to talk about what The Lion King meant to me and mine and a few thousand of my closest friends...my tribe.  But I know people here and in other cities..."autism people"... were abuzz.

The bill of goods we were sold is that this was to be an "Autism-friendly showing of The Lion King musical".  I know that there was at least one sensory room.  I know that there were quiet rooms for people to retreat to if it got overwhelming.  I know that fidgets were available.  I know that the staff was bolstered by volunteers who were familiar with autism.  I know that when we bought tickets we received a social story discussing what could be expected.

The other things I saw while I was there, but I was mostly ignorant of the details because once I bought the tickets I put it out of my mind until probably a week before the performance and focused on our little family.

We'd gotten tickets right away, so our seats were good.  Extremely good.  Front row, aisle, with the grandparents sitting an aisle back.  We were as close to the stage as you can get without actually being part of the performance, not that Lily didn't try to join in.

We were ready in plenty of time for the drive downtown.  All we had to do was get the kids McDonald's and then we'd be set.  Predictably we fucked this up.  With no money, Leslie arrived at McDonald's and attempted to purchase Happy Meals with her smile.  And just as predictably McDonald's found this currency wanting (despite the smile being priceless).  We had to make another unplanned trip.

Leslie got home and found me less ready than she needed me to be and snapped.  I snapped back and we were off to the races.  Pissed off and stressed out.  It wouldn't be a family outing if it didn't start that way.

Extra trip accomplished, we left fifteen minutes later than we wanted but still arrived with 10 minutes to spare.  I pulled over to the curb in the rain and the girls piled out.  I circled the block to look for parking and found it a half block away from The Benedum (the venue).

I pulled into the parking spot, unlimbered my umbrella and crossed the street to the Benedum before  ducking inside.  Leslie texted me that they were already seated, and I had time to spare.  I found Lu (ABOARD's director) in the lobby.  She told me, unnecessarily, to calm down, and I meandered in to find our seats.  I was the last to arrive, and although I probably sat down just after the 2:00 start time, they allowed people to slowly trickle in for several more minutes before the lights were dimmed (not extinguished) and the show started.

I'm told the music was quieter...for being directly in front of the speakers, I suppose it had to have been.  The music started to play, and Lily looked a bit alarmed.  She reached out to grab hold of our arms.  She didn't want her hands to be held, just wanted to hold someone's hand.  On her terms.  She was agitated.  We made references to the stage..."see the monkey!" ..."her name is Rafiki"...

"No, don't talk!"

I worried she'd start to spiral, but then the music started to sound familiar, and the animals started to walk the aisles...and she was captivated.  Her eyes got big and she started looking all around her at the elephants and giraffes and cheetahs, at the cloth construct birds tethered to poles swirling around our heads, at the colors and the lights and the music.  We kept a steady stream of observations going, attempting to calm her and engage her.  Her movements were quick and stiff like she was scared and anxious, but looking at her face I could see she was just very stimulated by what was going on around her.

The animals gathered and voices joined to voices, agglomerating and building, and they sang the "Circle of Life" and the music and the song built in richness and volume to the crescendo and the Lion King, Mufasa held up his cub for the world's inspection and acceptance and the animals bowed and Lily sang along.  We watched her watching them and my eyes started to brim and I looked to Leslie to see the tears already streaming down her face...watching Lily watch The Lion King.  I gave Emma's hand a squeeze.  She seemed oblivious to the emotion.  I felt the cold constricting band of anger and stress loosen and then fall away from around my chest and I felt like I could breathe again.  I sighed and breathed a deep relaxing breath and then I leaned back into my seat - willing my muscles to slacken, willing my hands to unclench- to enjoy the show.


Throughout the performance the mutters and shrieks and even what sounded like prolonged boos rang out from the crowd.  It felt weird.  It felt funny.  It felt off.  But we all knew.  We all knew it was okay.  And the performers knew it was okay.  And nobody complained or hushed anyone.  Not once.  And believe me it was a full house.  A young man near us, let loose a cacophony of shrieks.  He was upset.  I'm not sure what about.  He stood and stamped and shrieked at his caregivers.  They calmed him and soothed him.  I'm sure they were conscious of others around them.  But nobody cast scornful looks.  Everybody in that venue had a stake in the autism life.  There was no judgement.  As the end of the performance neared he'd had enough.  His group quietly stood and departed and he visibly relaxed in gratitude as they left.  No one told them to wait to stand.  No one cried, "Down in front!"

If the ushers had negative opinions about this disruption to business as usual they didn't show it.  I never saw one look of scorn or judgement.  I saw only smiles.  I experienced only friendly service. 

The performance ended and thousands of grateful patrons stood to appreciate it with cheers and whistles and the performers bowed and smiled in acceptance.  A little girl wearing noise reducing headphones bolted for the stage.  Her mother scooped her up and took her back to their seat.  I smiled.  Ten seconds later she was loose and charging the stage again.  Again her mother corralled her expertly and returned her to her seat.  A third time she bolted.  This time the performers saw her and they began smiling and waving to her, blowing kisses her way as she smiled delightedly back at them, her mother simply holding her in place this time.  I laughed and found again that my eyes were brimming.

Lily stayed in her seat the entire time.  She loved the performance.  At the end of each number she immediately turned to one or both of us and said, "I want the next song."  And each time we replied, "It's coming, Lily."

We left the Benedum with a spring in our strides.  We dodged rain drops and got in our car and drove home and Leslie would sit at the table, or couch, or stand at the counter, or lie in bed for the next...I don't know...four hours maybe?  and repeat, "My heart is full," over and over and over until all she had to do was catch my eye and I'd roll mine and say, "Yeah, I know.  Your heart is full...full of love."

I hope that was everyone's experience.  When we left I tried to think of what could have been done "better".  And the things I thought were all limitations to the venue itself.  The least autistim-friendly parts of the performance were not part of the performance at all.  They were the facilities, or the ingress and egress.  That is where the waiting took place.  That is where the large, loud, stimulating crowds jostled and maneuvered.  And I told Leslie as we left, "I don't know how you could improve upon that unless you convinced the venue to sell half the seats and call 50% attendance a sell-out, then got some major corporate sponsor to underwrite the missing revenue from tickets and concessions so that it still made money."  And that's it.  That's the only issue I had.  It was ironic to me that the intermission, traditionally a time to get up and move around, relax and visit the facilities, was probably the most stressful part of the performance for most people.

We were allowed to get up and move around.  We were allowed to make all the noise we wanted.  We could leave if we needed to without complaint.  We could take her to a quiet room to calm down.  We were allowed to bring in our own food.  The music was softer.  The lights were dimmed but not extinguished.  Extra volunteers were on hand.  Performers and employees were instructed on what to expect.  Women were in the men's room with their kids, men were in the women's room with their kids.  And everyone knew why, and it worked.  It worked so well.

This was big. 

In December they're putting on an "autism-friendly" performance of the Nutcracker.  We used the Lion King to gauge whether we thought Lily would enjoy it...could handle it.  We'll be buying tickets, assuming they're still available.  She can do it.

One last post script.  I know that other organizations were witnessing this.  Seeing how it was done.  Seeing whether it could be done in their venues.  If you're reading this and thinking to yourself..."God, I wish they'd do something like that here," then consider the possibility that they just may.  Contact your local equivalent of the Pittsburgh Cultural Trust and see.  Contact your local equivalent of ABOARD and see.  Don't assume they're not.


Pittsburgh Cultural Trust on Facebook
Aboard (Autism Connection of PA) on Facebook

The Walk

I keep putting this off.  It always seems so monumental after all the up front effort and sound and fury of the walk itself dies down to pick it back up again.  But it's worth it.  I'll try to stay somewhat brief.  I think last year's recap put most of you (who were around for it) to sleep, and I want to recognize the effort, the generosity, and the "give-a-shit" of Lily's friends and family...and extended internet family.

Let's first just "do the numbers".  Numbers are easy, and it'll be a nice comparison.





This year we used last year's kickass actual number for our aggressive goal...and beat the shit out of it.  So now NEXT year we'll use this year's kickass actual number for our goal and based on the chart (charts, and also hips don't lie.  But mostly charts) we'll raise close to $5,000.  Maybe.  Also based on extrapolation...by the year 2016 or 2017 we'll have 27,000 walkers.  Possibly my math will break down before then.  But CHARTS!

So in terms of how we did fundraising for ABOARD...we did awesome.  In terms of how we did against the other teams, however, despite mopping the floor with all but one team last year...THIS year some of the teams got big donations at the last minute and passed us at the finish line.  All in all I'm just excited that ABOARD had a successful walk...but...ultimately, I want to beat their asses next year.

What I've figured out is that we need one or two corporate/local business sponsors to make big donations.  A couple of the teams had donors who gave in excess of a $1000, or who had fund raised in order to write a big check for the walk.  If I want to keep growing the amount we give to the charity each year, that's what we'll have to do:  find a donor with an "in" to their corporate giving program.  This year my company did not contribute.  I have no "in".

This year we had a better handle on where things were and what to do, and ABOARD took it upon themselves to print out the labels that it took me so long to fill out last year (because we got one for every 5 walkers or something), so things went a little smoother.  Or at least it seemed that way to me.  I'm not sure how it was for all the walkers.  I try to talk to people, but they're with their families, which then fracture and disperse along age lines, with the kids finding the kids and the grown ups finding the grownups...and a few floaters hovering close to the kids AND the grownups so they can sort of participate in conversation, but also watch the kids.  It's hard to visit with everyone, or at least it's hard, after a certain point, to remember who you have and who you have not visited with in order to make sure you got everyone.

I hope we conveyed how much we appreciated everyone's support of us and Lily and of the charity.  But I sorta doubt I kicked ass in that department.  So I'm sorry if I didn't.  I felt a little scattered despite the additional ensmoothening that ABOARD provided.

The walk was great.  It was the best day of the year to that point.  Warm, not hot, sunny and clear and bright and cheerful, and they were playing music and having the crowd do stretches and there was dancing in the street and much rejoicing as we took off from the starters line and marched...EVER.  SO.  SLOWLY...past the starting line before the crowd started thinning by velocities...dopplering out past the starting line until we could lengthen our strides and get to doin' some serious WALKIN'.

It was fun.  People got shirts and some swag and a nice walk in downtown Pittsburgh and raised money for an awesome charity.  And I really love you all for contributing or walking or sharing updates or whatever.  Just thanks.

Here are some pictures from the big day:

Thanks everyone for helping make this another wonderful walk.

Walk Update

Probably I'm overdue to update the State of the Union "walk-wise".  As most of you already know we're walking again this year to benefit a local autism charity, ABOARD.  Our goal this year was to raise $2,500 for the charity, and to get a sponsorship for team tshirts.

We're at about $2,000 with about four weeks to go until walk day.  The site shows $1,700, with $175 in pledges, but we just dropped $200+ in checks off yesterday, and I know at least one person had their contribution mysteriously "vanish" into the inner machinery of Donor Pro's website (the donation was credited to the charity, but not the team...that's being resolved), so I know there's at least $300 in donations not in that $1,700.

We're just looking for $500 more to hit our goal. 

AND...AND!!!!

My mother-in-law somehow magicked her way into a t-shirt sponsorship from Bill Few Associates!  Which is great, because now I can focus on finishing the artwork and getting it to the printer.  Well, done!!

So...One last final* desperate plea...we only have $500 to go.  If you can...give, if you can't...cheer us on or share to folks who you think might be interested in donating to a charity that directly benefits autistic adults and children and their caregivers.

Click the link to the fundraiser, register, then sign up to be on our team "Just a Lil Walk"... Here.

If you have any questions, PLEASE send me an email at blogginglily@gmail.com, or contact me on facebook.

Thanks everyone!

*subject to change

May 18th is Coming Fast

It's time again to push "the walk" a bit.  I know I haven't been bugging you lately about it, but I will, and you're forbidden from skipping over these until you've participated.  Hah!  Trapped you.

Quick recap:  We're doing a walk to benefit a local autism charity that has in turn benefited us by our association with it.  We have attended their Galas and their Santa visits and their seminars and their lunch 'n learns.  We have borrowed their books and gotten recommendations for doctors and met other parents and received pamphlets...and now...because all of the above crap is funded ENTIRELY via donation...it is time for us to attempt to give back.

And giving back to ABOARD doesn't mean paying back on a balance to zero things out.  It just means that the money we raise will be used to help some OTHER parent/autistic out there who needs information, or support, or guidance or whatever.  It means they'll reach out on behalf of parents whose kids are newly diagnosed and find people in the area who can talk to them (as they recently did by asking me to call a dad with a newly diagnosed daughter...ME??  (seriously I'm not sure what they're thinking on this one...but who am I to judge)).  It means they'll host more Autism-friendly visits like the Easter bunny visit at the local mall (with them taking care of marketing, staffing, scheduling venue, answering questions, cleaning up, etc...at no cost to the participants).  It just means that giving to them means indirectly benefiting other people who can use the help like we've used the help ourselves.

Lily will be walking again this year (probably the short route (1 mile though...pretty awesome), and there'll be shirts and swag and fun and camaraderie.  And if you CAN'T make it...you could be a virtual walker from wherever you are...and tweet pictures to me while I walk and live tweet it from Pittsburgh.  Let's say hashtag:  #justalilwalk.  And if you can't walk in person, and you can't walk remotely...or even if you can't walk...you could donate.  

This year we're hoping to get a sponsorship of $500 for t-shirts for the walkers and $2500 in donations for ABOARD.  

There's a link at the top of the page.  If you have any problems or questions please feel free to notify me.  We found a way around the out of country Visa problems from last year.  If you use paypal, go through ABOARD's Paypal (there's a "DONATE" button right on their website) and in the purpose or memo line, put "Just a Lil team" or "Team Walter".ABOARD  will see that when they get the donation, enter it in as an offline donation. 

Anyway...this is our one big fundraiser that we feel like directly benefits not only Lily, but all autistics in Pennsylvania...young or old....and their parents and caregivers, and it's all run via donation.  The more we give, the more they can provide.

This is easy as 1, 2, 3:

1:  Go HERE  and register as an individual (or virtual walker if you won't be here).
2:  At the bottom of the registration it says "Join an existing team" ...pick "Just a Lil Team"
3:  Give us all your money!

It's so simple!!

Anyway, please help.

Here's some eye candy to ease your pain.

Daddy, I feel sad that we haven't reached our goal yet.

Just a Lil Walk II: Lily's Revenge

From Last Year's Walk

I'm inviting friends and family to participate in Highmark's, "Walk for a Healthy Community" with us again this year. This walk is near and dear to our little Lily, specifically because one of the participating organizations (the organization to which 100% of the proceeds will benefit) is ABOARD (Austim Connection of PA).  

Two years ago year around September, when this blog was newer and greener, I broadcast a plea for help to the 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 won't, 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 several of their sponsored events...autism-friendly days at an indoor playground, autism-friendly Santa, autism-friendly trips to see the Pirates play, a Gala (in a week), a symposium (in the Spring) and Lily's grandparents have gone to seminars as well.  They've become our personal pet Autism Charity.  We're forming a team again this year, "Just a Lil Walk", 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 18, 2013, 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.  

I've created a page on the blog to allow you to sign up for the team. I've also linked an 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.  Last year we set a goal of $1,000 and easily beat the shit out of it.  Sorry...didn't mean to swear.  It seems like a lot, but I feel like I want to stretch for it a little and see what we can come up with.  

It's really not FOR Lily. Lily has us, and her family, and our friends. She's as blessed to have people who love her as we are to have her in our lives. Not everybody is as lucky as we are.  So while it's not for LILY, per se, it's for people like Lily, that don't have the support she has.  We've set up a team. We have a goal. Lily and Emma and Leslie and I will be down by the stadium at Stage AE on May 18th 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. 

This year I'm on the ball...setting all this up the first day I could.  We have about 3 months 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). 

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 $500 for 48 (?) shirts.  I'll check that number later, cause I don't have it here, but the more team members means less $/shirt when I get them made).  If we get more members, we'll need more for shirts.  But $500 would probably outfit the lot of us.

Going to See the Fat Man

So...somehow a post I wrote last week about going to see Santa at an Autism Connection of PA event, posted without my knowledge.  Well, to be fair, it posted when it was supposed to post over at Childswork.com...it just sort of slipped from my mind.  So yesterday, slaving away for the man, I didn't even glance at it, or twitter, and it just sort of sat there and gathered dust and wondered forlornly whether it's daddy was going to visit it.

I feel so bad.  I'm sorry, post...daddy's going to visit you today, I swear.

Going to see Santa; going ANYWHERE really, requires some planning for us.  It's more than just hopping in a car and standing in line, and it is for most of the people that read this blog too.

Here's how WE do it:

"A Visit to St. Nicholas"

As a special preview of one of the tips...I'll give you a spoiler.  "Take lots of pictures".

Walk Day!

I got all excited because during the walk I took a poop-load of pictures and tagged them geographically.  In my head I was thinking, "I can get a map and just plunk the pictures in and make it all interractive and gadgety, and by the time i was done exporting map routes to Google Earth and then Google Maps, and then Panoramia and uploading pictures and on and on, I finally decided that IF a blog post about this walk was to be written. . . perhaps I'd best dumb it down because it was taking forever and I still wasn't happy with what I had.


So. . .


I wasn't really worried that Lily wouldn't like the tshirt, but even if I HAD been worried, I needn't have.  She jabbered about how she liked her blue shirt and seemed genuinely fascinated by her picture on it.  It was pretty cute.  I really wasn't sure if the cartoon would be too abstract for her to link to herself.  I was worried that I hadn't sketched it well enough regardless.  I mean, it was really a two pronged problem.  1)  Did I do a decent enough job to even make the sketch recognizable to someone who didn't know who it was supposed to be, and 2)  Would Lily be able to put it together.


Emma and I left early to get the registrations stuff done so Leslie and Lily and my parents could just show up and walk, but Leslie sent these pictures.  Lily's l's are w's, so really she was saying, "It's wiwee!  It's me!" but who writes that way?  Regardless, it was VERY cute.  Leslie said she was very excited to walk (see exhibit B).


Couldn't have asked for a better day.  It was crystal clear.  No clouds, mid 70's all day (when it wasn't mid 80's).  We got there about 7:40 and introduced ourselves to ABOARD (Autism Connection of PA).  They were really helpful getting us tshirts and water bottles (or. . . water skins.  They were like foil versions of a wine skin, kinda cool) and giving us tickets to fill out to enter for drawings to win stuff in the overall Highmark Drawing.  They'd forewarned me to bring address labels, and I printed some out, but not enough. We got 1 entry for every $50 raised. . . and $2500 raised. . . so there were 50 tickets for the big drawings, but I'd only printed out 30 labels.


While I filled out the rest of the labels, Emma stood guard and held the completed ones so the "wind" (it wasn completely still, but she needed a job or she was going to drive me batshit crazy pacing around me) wouldn't blow them away.  A band started warming up behind us at Stage AE.


Emma said, "Is that such a good idea?"


"What, Em?"


"A band?  Don't some autistic people have problems with really loud noises?"


"Yeah," I told her, "But this isn't just a walk to benefit autism charities, there are all sorts of charities here."


"Okay. . ." she said, unconvinced, eying the stage suspiciously.  I liked that she's thought about that.  


A clown wandered over to the table where I was filling in addresses and Emma reoriented herself so that I was between her and the clown.  It was funny.  The clown made small talk. . . sorta. . . it was schtick.  She had blue hair, and I'm not going to lie. . . she was creepy. . . but she was funny, as clowns go.  


She started setting up for balloon animals while I continued to fill out information.  As I listened to her banter with people queuing for animals I muttered, "She's pretty funny, right Em?"


Emma, still behind me, said, "I guess. . . for a clown.  I don't really get 'clown humor'.  I get your humor."  I laughed and we finished the last couple tickets and looked for a place to turn them in.  I asked Emma if she wanted her picture taken with the clown but she said no. 


People started showing up for the race and after I'd turned in our tickets Emma made herself busy with her friends.  I stowed the rest of our stuff at the Aboard tent and meandered around, making small talk with people and cluelessly attempting to seem organized.  Lily and Leslie and my parents arrived and I had an excuse to seem disorganized as I'd take turns watching Lily in the crowd.  It DID freak her out a little.  BUT. . . her biggest issue was being wrangled into position (for pictures, or when we tried to keep her from walking off and exploring), not from the noise or crowd.  

The Pirate Pierogies were there and Lily loves her characters.  I got a picture of her with. . . Cheese Chester.  If you're not from Pittsburgh this will make ZERO sense to you, and it's too long to explain in what's probably already going to be a pretty long post, so link >>HERE<< to see what the hell a Pirate Pierogie is.  The event was FILTHY with pierogies.  And Steely McBeam (Pittsburgh's shameful secret Steeler mascot that nobody outside Pittsburgh knows about and nobody inside Pittsburgh acknowledges) was there too.


Tell me that pierogie isn't creepy.  You can't, can you?  No.  But not as creepy as a clown, so I guess, whatever.  So Lily kept trying to latch on to whichever costumed polish food product was closest and we got a couple pictures.  I took one of Emma and her friends with Steely, but it must be on the camera and not my phone.  He's probably even creepier than the pierogies are.


And then things got weird. . . Lily started a doomed and heart-breakingly brief romance with the cartoon image of herself on Emma's shirt:

"Hey baby.  How YOU doin'"

"I kissing her"

This was 'happy time'.  Because sometime AFTER this is when I kept forcing Lily to stay near the Aboard table rather than meandering into the crowd of 10,000 (!) saying, "I want balloon" since the place was riddled with balloons.  And she got pissed and had a mini melt down and tossed her kicky spectacles on the ground and my dad, who was walking behind me, almost smashed them underfoot, but saved them.


We started collecting at the starting line around ten to 9.  The walk was supposed to start at 9, but it was a little late.  Leslie and my parents took Lily aside after a painful picture attempt and they lined up behind us because there was a 5K walk (for serious charity walkers) and a 3K "Fun" walk.  Because those people aren't serious about walking.  It's all for fun.  We. . . everyone but my dad, my wife and Lily, were walking 5K.  For the children.  


The turnout:  Within the 10,000 walkers our subset consisted of about 42 walkers.  It was magnificent.  Everywhere you looked was a little cartoon of Lily on a shirt.  So many of Emma's friends from school made it.  Emma's dance teacher had to call off dance for Saturday because six of her dancers were at the walk.  Friends from primary school and softball and dance were there to support Emma supporting Lily.  It was beautiful.


We were starting at the bottom blue dot, and we were finishing at the top blue dot.  They mumbled some instructions into a megaphone before the start of the walk, but I wasn't paying attention, and it's not like there was any danger of losing my way in a crowd of 10,000 people all going the same route (although I suppose if they'd all have toppled off the Rachel Carson Bridge I'd have just pointed to Emma and the rest of our team and said, "It's THIS way, I think" and we'd all have died.)


The starting line was crowded with people.  Our group was probably a thousand people back or more.  We heard the sharp report of the starter's gun and as a cheer went up from the crowd, I ditched the balloon that Lily had wanted to have but didn't want to hold in celebration and we slowly plodded forward as the mob began the slow surge into motion and the space around us started to dilate.  After a minute or so we were actually walking, and I used my phone's dusty "Mapmyrun" feature to record our progress.  We were moving at about a thigh-cramping .7 miles per hour at least for a few minutes before we were able to stretch our legs and walk reasonably.

About three minutes into the walk a TV camera materialized and Emma was on it like blue bonnet.  If she made the news we never found out because we couldn't tell what station carried it (the camera wasn't marked and our preferred local news didn't show her) and moments later then he was behind us and our feet were carrying us toward PNC Park (where the Pirates play).


We walked past Honus Wagner's statue and I snapped a picture.  Actually, I snapped three.  The sun was shining so bright in my eyes that I couldn't see ANYthing on the iphone to tell if I was getting a picture of the statue or not.  All three pictures ended up sucking to various degrees, but this was the best of them:

You can see the rays of light beaming into my eyeballs here. . . 

and. . . this was the worst of them:

Arrrgh, my eyes!!!  Pathetic.

The kids were doing great.  In fact, they did really well until about a half mile from the finish line.  Even then they didn't completely wilt and stayed relatively upbeat.

Emma's in the front on the far right with her sweatshirt tied around her waist.

Meanwhile, behind us, Lily and my dad and Leslie had started their walk 15 minutes later.  Leslie told me Lily was doing great and that she'd actually gone to the bathroom in one of the (urk) port-a-johns before the start.  That was great news for us, and her in particular.  She sent me a starting picture:

Note glasses dangling from Papa's collar.  Still. . . she's chipper.  

Ahead, we walked through night and day past the Andy Warhol museum, and in and out of weeks through tunnels and almost over a year over bridges to where downtown Pittsburgh was.

"Tee dum, tee dee
A teedle ee do tee day
We're out for fun
And this is the game we play:"

 

You didn't realize when you signed up to be a virtual walker that you were actually going to have to live this walk picture by picture, did you?  Or perhaps that was your secret hope.  One of our friends who couldn't make it, sent text messages to Leslie showing her kids wearing signs supporting the walk while they walked somewhere else.


Only a few more to go.  We walked into the city along Fort Duquesne Boulevard past this mural:

And Emma spotted her summer CLO (Civic Light Opera Academy . . . for theater and music-y stuff) in this spooky alley.  The CLO offices are significantly less spooky than this alley, I assure you:

You can almost see the sign. . . it's approximately "beyond the point of no return" feet down the alley.

We made a wide turn and made to head back on 10th Street.  I texted my wife that we just passed CLO Academy and she replied, "we're done."  So that was good.  But we still hadn't made it to the second mile.


Emma yelled frantically that she needed her iTouch to take a picture of PNC Park and I fumbled for it before finally extricating it from my pocket where I was keeping it safe.  She had the disappointed look of someone who'd just missed a great opportunity, but I said, "Just run over here with me, stop, and take the picture.  We can catch back up." And she brightened immediately and we jogged to the fence line and took a picture across the river at the ballpark:

It was hot by that time, probably in the 80's.  The girls weren't quite as spunky, staying close to their parent or chaperone and not giggling quite as much, but really nobody was whiny or upset.

We'll cross that bridge when we. . . oh. . . now.

We crossed back over the bridge and were in the home stretch.  I texted Leslie to ask where they were.  They were at the ABOARD tent.  We marshaled our remaining resources and soldiered to the end.  Emma later lied and told me she wasn't tired at all.  

The youngest team member

People had started peeling away from the group, heading toward cars, trying to get home quickly before the rush.  I hollered my thanks to their departing backs and their shouted, "your welcome!"s.  We had a softball practice game scheduled for a few hours later, and I knew people were trying to get their kids home and cooled off before it started.

still keeping it together

made it!

And then it was over.  I found my family and met some more ABOARD people.  They'd graciously stored some of our extra shirts and water in a box behind their tent.  Before I left they did shake me down for their photographer's camera.  Apparently he'd put it in the box with our stuff for a while.  I assured them I didn't have it, but if I did I promised I would give it back.


As we left with a box full of ABOARD tshirts, we stumbled across some team members and handed some of the shirts and water 'bottles' out, lightening the box a bit for the walk back.  


Lily was still relatively happy.  We dangled a promise of McDonald's over her head and she latched onto it like a promise of salvation.  We stopped at another port-a-john before we left, the walk had taken about an hour and a half by the time we were ready to leave, and we didn't trust the 20 minute trip back to McDonald's to proceed dryly. . . but it she didn't go, and she still stayed dry until we made it home where she used a REAL bathroom.  I didn't blame her.  I'd skipped my second cup of coffee just to stay away from those things.


Emma got a brief rest before she changed into a softball uniform and got ready to play.  I carted the extra tshirts and water bottles into the house to. . . do. . . something with.  I don't know.  I have to find the people that didn't get shirts and get them shirts.  


We raised about $2,500 for ABOARD.  When we started I thought we'd be lucky to get $500.  They thanked us for how 'organized' we were as a team.  I told him we didn't really have a choice.  When it started we thought maybe we'd have 10 or 15 walkers.  We walked with 42.  Organization by necessity.


Whenever I told the story about how over half of the donations came from people with whom I'd never shared a verbal conversation, amazed head shakes ensued.  And they're still "ensuing" at our house.  We're amazed at the generosity of our friends and family and. . . 'internet people".


Thank you all for contributing to an amazing and successful first walk.  I promise I'll be a little more 'together' next year if you're still around following our adventures.