We're Walking!

It's here, people!  The walk is here. Man, it snuck up on me again.  Maybe it's better to be a total pain in the ass to people about it just so everyone knows it's coming versus trying not to inundate people with reminders.  Well, regardless...we're basically six weeks away.  The walk is May 12th!  It's time NOW to register and donate, and send me your tshirt sizes so I have enough time to purchase them. 

Regarding the tshirts...when you register to walk or donate or whatever there's a place on the registration form that prompts you for your tshirt size...this is for the Highmark shirts...NOT the Justalilwalk shirts.  I can't even see what you enter there, so if you're walking with us in May...please please please reach out to me on facebook/twitter/ig/text/email or...if ALL ELSE fails...phone and get me sizes. 

The walk is always a blast and it raises money for a great charity that directly benefits autistic people (both children and adult) and their caregivers.  So...Register now at the link below!!

Link to just a lil walk team page!

I Lied

I told you guys I was going to wax rhapsodic about shrubs, but as I was pulling pictures for the last post, I realized all the shit we haven't talked about that's more important than shrubs (sorry shrubs, but it's true).  Anyway, I lied and I'm sorry, and I'd tell you I'll never lie again, but that would also be a lie, and you see how this kind of stuff can really snowball on you?

Anyway...We had the walk!  It was just after...or maybe before the last post about EEG's and Seizures and stuff.  Not the most recent last post, but the last post before the last post.  The second to last post. I guess that's what they call it.

Anway, we walked, and if you really really feel guilty about not walking (participation was at record lows for the team despite the tshirt kicking significant ass this year) then you can basically catch the whole (almost literally) thing because I Facebook-Lived like...28 minutes of it.  I'm super entertaining.  At least...at least my mom said I am.

Probably you can't link to this if you don't have facebook.  I don't know.  Maybe you can.  Facebook Live: The Walk

Anyway, we had a good day.  Raised some money (though not as much as usual...slackers...) and had a nice walk.

Standing on my tiptoes to appear taller

It's Kenny!  From Kennywood.  I...I think

Finish Line!  Like...like it says in the picture.

Post "race"

Sure...NOW you sleep.

Making the Cut

Tonight is Lily's big haircut.  Taking her to the salon this time.  I think I've narrowed her look down to three choices, with one MUCH shorter than the others.  And I think I'm going to need to learn how to cut bangs.  But maybe it'll make things easier.

Option 1:  Longer...too long?

Option 2:  Shorter...

Option 3 (Blogger friend's gorgeous daughter) shortest

I've been washing her hair every day.  It makes brushing it sooooo much easier the next day after she sleeps in it, so I think it's been really helping her mood, because there aren't as many tangles to comb through that pull and hurt her head.

Also, we went to Eyeglass World and picked out some new frames for her new prescription.  I liked her old frames, but I think she was getting too big for them.  So she has some new ones now.  Purple.  Like Lachey Wiggle's shirt.

So she'll be a totally new kid next time you see a picture of her...which means I'll have to redo the blog graphic.  Which means I'll have to redo the Walk tshirts...DAMMIT!

But...segue here...

The walk is coming up.  I'm WAY ahead of the game this year.  Already contacted the tshirt guys.  Picked out a color (charcoal gray (they told me that whites don't show up well on black unless you double the ink, and they charge for it) with white lettering and graphic).  Should look cool.  Already got a nod on the sponsorship.  Already registered myself, Emma, and Lily, and set up the team site...Just a Lil Walk.

Soooooo...register/donate/save the date so you can show up and walk with us.

Last night I got eight hours of sleep.  I woke up and the coffee made me wired.  I think this whole time I just thought caffeine was a myth because no matter how much I drank I was still tired.  But today...wow.

Also down six pounds since I started focusing on my six areas to cure the Blues.

• Create
• Workout/eat more betterer
• Connect with kids
• Get more sleep
• Finish a project

 And I'm doing all the things.  Mostly.  I can't do it all, but I find that if I say...okay, I can't be creative or workout tonight, but I CAN get to bed early.  Orrrrr...I can't get to bed early, but I'm excited to finish this project and then hang out and eat popcorn with the kids.  Or WHATEVER...as long as I'm making a concerted effort to hit at least one or two of the high points...it's good.


Alright...I'll be back soon.  With pictures.

Just a Lil Walk V

This is the fifth "walk" for the Walter family.  Last year was the first time we did it without Leslie.  And probably I was a little too scattered to give the walk all my attention, but I think I can be forgiven.  This year, I have a redesigned logo, a tshirt sponsor in place, and a little bit...just enough of emotional space that I can provide a bit more focus.

Leslie loved the walk.  I know it delighted her how people came out of the woodwork online and in person to support little Lily.  Autism was Leslie's cause.  I know that it probably seems like maybe cancer could or should have been her cause, but Leslie was never comfortable with that.  She never wanted to wear pink.  She never wanted to broadcast her breast cancer.  Supporting Lily was her cause.  This walk was and is the "event" that the Walter family used to express that support.

Last year so many people came out of that woodwork.  I think because Leslie had just passed.  I think it helped to have someplace to direct your pain.  I think it helped to feel like YOU were helping.

I suspect this year a few less people will make it out.  We've all had a year to get used to it, after all.  But I hope I'm wrong.  I hope you'll come out and support us as we walk.

Please read below and consider joining us on May 14th as we walk for Lily.  Leslie will be walking alongside all of us in spirit.

--------------------------

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.

Four 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<<.

Anyone who was autistic said, "Don't give money to Autism Speaks". There were a lot of reasons, and most of them were good, but "don't give money to X" doesn't really help.  If not them, then who? 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, (Now Autism Connection of PA). 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 every year at the mall, (they did one for the Easter Bunny too, maybe you saw pictures of Lily on Facebook)

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
Painting with a Twist
Wigle Whiskey

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 Walk 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 14, 2016, 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.

Here's the link:  Just a Lil Walk Team Page.  If you click that it should take you to the page.  Register as a walker, donate, or register as a virtual walker.  If you are walking with us, please get word to me what your t-shirt size is, so I can have enough shirts (and the right sizes) made.  Like last year I'll be ordering those nice soft shirts everyone seems to like.  Color to be determined...

OH!  Just to clarify something.  The Highmark page will ask you your tshirt size too.  That's because if you donate (I think it's $50) you get a free Highmark shirt.  When you click that size...I don't see it.  That's for Highmark...not Just a Lil Walk Team.  So...still need sizes regardless of whether you clicked that button when you registered.

I'll also link the event to the Just a Lil Blog Facebook page.   I've set a goal of $3,000.  I hope we beat it.

Lily and Emma and I will be down by the stadium at Stage AE on May 14th 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 three weeks 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.  After about the first week of May, I won't be able to change the tshirt orders.

Thanks,
Just a Lil Walk Team (Jim, Leslie (in spirit), Emma and Lily)

Sleep Walking

Friday night was Emma's chorus concert.  I took Lily and we watched the 7th and 8th graders sing.  Lily was really good throughout.

The walk was Saturday.  It was...well-attended.  Over 80 walkers signed up.  I'm not sure all of them made it (I know a couple didn't), but most did.  The weather looked gloomy and threatened rain, but turned warm and muggy instead.  I drove down early with Emma and a couple of her friends so that I'd be there for shirtless team members.

That sounds bad...

ABOARD is not ABOARD!  It's Aboard's Autism Connection of PA
I was afraid people would get lost, so I sent this out.  "The Beach is that way!"

 

Lily arrived with my parents and was VERY excited for the walk. 

I have two pics that both ALMOST capture the whole team.  I posted the other one on Facebook.

I just checked the website this morning and it says we raised $4,626 for (Aboard's) Autism Connection of PA.  I suspect when the final tally comes in it will top $5,000.  Amazing.  Leslie would be so excited. 

I talked to Emma that night.  She said she had a rough day.  I didn't notice it.  I was so busy caught up in the organization of it all, handing out shirts and handshakes, that I didn't see if she was visibly upset.  But she told me that she'd been sad.  She said, "Mommy really loved the Walk and it was hard doing it without her there."  And I almost said, "But she was honey, in our hearts," but I know that's not what she meant, and I know it wouldn't have made her feel better, and maybe would have made her feel worse, so I just squeezed her and told her that when I'd seen her she'd looked good and that I was sorry for not noticing and how proud mommy would have been at her and Lily and at all the money we raised for the charity, and if it didn't cheer her, at least it got her thinking about something more positive.

I hosted guests for much of the rest of the weekend, close friends who hadn't yet said goodbye to Leslie or seen the kids and me yet.  There were some tears, for sure.  Emma seemed a bit out of it, but assured me she was fine. 

That night I dreamed of Leslie.  It was the first time I'd dreamed of her since she passed.  I have been sort of living in fear of dreams.  You know how sometimes you have one of those dreams where you're really really angry with your spouse because they did something completely meaningless that only happens in dreams...like...painted the dog or something.  Anyway, the emotion is so strong and the feeling so real that you wake and you're still pissed.  Or, maybe it's the other way, that you dream something so great that when you wake up you're really sad to learn that the dream wasn't reality.

Ever since her death I've been dreading having dreams about Leslie where she's still alive, and the dream being so real and convincing that I'll wake up and get gut punched by the reality of her passing. 

It was a really short dream.  I forget all my dreams now, as if I never had them in the first place.  I don't remember when that started, maybe in my thirties.  When I woke, I knew I'd forget, and I thought about writing it down but didn't (it was like 4:30 in the morning).  Leslie was alive.  She was healthy and looked beautiful.  Her hair was long and thick like it was before chemo.  Sidebar:  She used to complain about her beautiful hair all the time.  It was too thick.  It took too long to get ready.  It was too hot.  You never see hairstyles for women with really thick hair.  And on and on.  But she knew she had great hair.  She was younger...maybe 35.  She was happy and smiling and we talked a little about nothing (that's why I decided not to try to write it down).  Like she was really alive.  Just a married couple chatting about nothing.  It was beautiful and fleeting. 

I woke up happy, which surprised me.  I think maybe even in the dream I realized it was only a dream.  So I woke happy, like I'd had a chance to tap into a particularly rich and vivid viewing of Leslie and see her smile again and hear her laugh again.  Like somehow this new experience with Leslie was almost like having her back alive again.  New words, new smiles, new laughs.  And then I got sad because as the dream started to fade away a bit the reality started to seep back in.  I went back to sleep but didn't dream about her again.


It wasn't as bad as I thought it would be.  It was even sort of...nice.  I'm not afraid to dream about Leslie anymore. 

Just a Lil Walk IV

This is the fourth "walk" for the Walter family.  The first walk without Leslie. 

Leslie loved the walk.  I know it delighted her how people came out of the woodwork online and in person to support little Lily.  Autism was Leslie's cause.  I know that it probably seems like maybe cancer could or should have been her cause, but Leslie was never comfortable with that.  She never wanted to wear pink.  She never wanted to broadcast her breast cancer.  Supporting Lily was her cause.  This walk was and is the "event" that the Walter family used to express that support.  Please read below and consider joining us on May 16th as we walk for Lily.  Leslie will be walking alongside all of us in spirit.

--------------------------

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.

Four 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 16, 2015, 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.

Here's the link:  http://hcf.convio.net/site/TR/Pittsburgh/HighmarkWalk?team_id=5013&pg=team&fr_id=1478.  If you click that it should take you to the page.  Register as a walker, donate, or register as a virtual walker.  If you are walking with us, please get word to me what your tshirt size is, so I can have enough shirts (and the right sizes) made.

I'll also link the event to the Just a Lil Blog Facebook page.   I've set a goal of $3,000.  I hope we beat it.

Lily and Emma and I will be down by the stadium at Stage AE on May 16th 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 three weeks 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.  After about the first week of May, I won't be able to change the tshirt orders.

Thanks,
Just a Lil Walk Team (Jim, Leslie (in spirit), Emma and Lily)

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.

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 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

PANIC!!! PLAGUE!!!

The affliction is characterized by chronic acute...cuteness.

Before everyone panics about the "epidemic" and the new CDC numbers associated with this CDC Survey...
 
 You should first read the paragraph at the bottom of the news story discussing the survey that says this:

"It's also controversial.

The new statistic comes from a national phone survey of more than 95,000 parents in 2011 and 2012. Less than a quarter of the parents contacted agreed to answer questions, and it's likely that those with autistic kids were more interested than other parents in participating in a survey on children's health, CDC officials said."

To recap what that said...they called 95,000 people. Less than 23,750 agreed to participate. They believe it's likely that those who did participate were more likely to have a vested interest (i.e., were autistic or had autistic children). So, no medical records, just a phone survey with parents.

1:50 is the number the survey returned. And that's a good thing for parents of kids with autistic children, not a bad thing.

First of all, understand this: Children either are or are not autistic. Adults either are or are not autistic. Surveys and censuses do not create autism. They just expose it to public scrutiny. So while you may have mixed feelings on the news that the CDC believes the number of autistic people is growing yearly, the number they came up with is a good thing for you or your loved ones.

Why? Because the more inflated the number (and that's not fair, I'm saying inflated like it's a fact that the number is grossly overestimated) the more concern, the more research, the more funding, the more treatment, the more press, the more exposure, the more "awareness" the more "acceptance".

What if...
 
What if next year the CDC does the survey again and it comes up with 1:40? And then what if the year after that they came up with 1:35? What if one day everyone was autistic to some degree or another? What if the number was 1:1?

How would the education system look if instead of autistic children being the "drain on public resources" they were just like every other kid? What if they had to do away with IEP's because every kid needed "special" accommodations in order to reach their full potential, so they had to change the way school looks entirely? What if students were taught according to their strengths and didn't spend all day working to shore up their weaknesses? What if every student could relate to every other student's neurology and struggles? What if EVERY parent understood what you were going through? What if the government, recognizing a true need started pouring money into education because it was the best way to address the needs of their growing autistic population?

If you're autistic, or have an autistic child...you should be celebrating every CDC survey that comes out with ridiculously high numbers...they mean your issues are getting serious media and political attention. They mean annoyingly ubiquitous (and often wildly inaccurate) press reports about cures and statistics, problems, abuses and intolerance that actually get your child's (or your) struggles noticed...validated...dare I say...addressed.

So...

I don't believe the number. I don't think it was arrived at in a particularly reliable fashion. I don't think it presages any epidemic...but...I'm cool with it. Because my daughter is autistic...everybody else is just playing catch up.

If you don't feel like waiting for the government to help out autistic adults and children, please consider supporting Lily and her team "Just a Lil Walk" as we walk in May, by registering to walk, virtually walk, or donating to ABOARD in the name of "Just a Lil Team" here: Sign Up Page.

It's easy to sign up and join the team, then we can all walk and do our part to help support the needs of our ever-growing autistic population.

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.

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.