The Summertime Girls

Lately I'm really struggling to start posts.  So...I don't.  I have a half-written tribute to Lily's school that I started on her last week, and she's already starting ESY at her new school.

Father's Day was Sunday.  I felt sad.  Maybe a bit sorry for myself.  It seemed to me that somehow I was sadder this year than I was last, and I feel like I probably just am not remembering correctly.  Last year we were at the beach.  Summer vacation.  It was...not what it once was.  But maybe just having vacation stuff to do pushed Father's Day stuff onto the back-burner and made that observance seem less sad than it might have.

It ends up being a weird circular celebration where my parents take Emma out to shop for me, and I give them a budget for Emma to buy a present to give me and then I pay them back.  It seems sort of sad.  It's ultimately no different from a balance sheet perspective.  When Leslie would take charge of Father's Day the debit came from the exact same account as this one did.  But she knew how to make it seem like a special occasion for me.  And too much of that now falls to Emma, who is as scattered and unfocused about those sorts of things as you might expect your average 14 year old girl might be.

So I was feeling a bit sorry for myself but we went to my parent's house and had a cookout and a good time and ultimately it was a very nice Father's Day, I just think I was moody and more fragile than I typically like to think myself.  We left that night and I got a great photo of the kids and I on my phone (Emma is a bit out of focus and looking slightly off 'camera' but it's probably one of the best pictures of the three of us ever)...but forgot to get one with MY dad.  Or my father-in-law.  I can be just as scattered as Emma, apparently.  Or perhaps we just know where she got it.

the best picture ever taken of the three of us.

ESY started for Lily on Monday.  ESY is "Extended School Year".  It's a school thing to help Lily keep some of the skills she picked up from last school year so that she doesn't regress over the long vacation.  Anyway, she has to ride a bus all the way to her new school, and I was a little edgy about the whole thing.  I got up a little extra early on Monday and had all her clothes laid out and supplements ready, and just tried to be extra organized so that the stress of this "first" wouldn't create problems.

Part of the stress of ESY is getting Lily on board, but she was fine getting on the bus (which arrived 20 minutes late.  I tried...so hard...not to call the bus company.  But I did.) and had what appeared to be a great first day.  Lily's teacher called me on my cell and just sort of gave me the verbal version of what she'd written in Lily's communication log.  Sounds like it went just about as well as I could have hoped.

Today before the bus arrived Lily said, "I can go to camp today?" and happy tears collected in the corners of my eyes as I furiously scribbled this into the communication log to send back to ESY this morning.

This kind of thing is exactly what Leslie would have stressed out about so much.  And I would compartmentalize it because, let's face it, Leslie had it covered, and I probably was not so understanding about how much stress she was under.  And now that stress falls to me and I can sort of get into my wife's head, absorbing that worry until it swells and I can physically feel the stress fill my chest like a helium balloon.  And then I remember to write lists...and it helps:

'call bus company

pack sun screen

pack lunch

arrange pickup'

So immediately after hearing about Lily's first day, I wanted to call Leslie and tell her.  Reassure her.  Lily's going to be okay.  Lily did great.  And so that was yet another happy/sad.  

Meanwhile Emma's summer is sort of just...going on.  In the background my teenager is experiencing her first "real" summer; the kind of summer I had when I was a kid.  She can stay at home by herself, go to the pool with friends, walk to her friend's house to hang out, go to movies...this is her first real taste of "freedom".  And although it feels like she's sort of the 'forgotten' kid in terms of making arrangements or whatever, it only feels that way to me.  To her I think the world is her oyster.  She is eager to be left alone.  Given space.  Allowed options. 

She started her volunteer work at Glade Run yesterday.  It's hard work and her feet were tired from pulling horses by lead ropes through the thick new sand of the coral.  She's not working full time this year the way she did last year.  I think it's more manageable this way, and more fun.

the best picture ever taken of a family member (glade run from last year)

This morning the bus was on time, and Lily was eager to go to "camp" and I noticed that instead of a seat by herself, or with a monitor...they put her next to "Lilly with two Els", who introduced herself to me as I was getting Lily up the steps of her bus yesterday.  She's a pretty, older girl, probably in her teens, and I don't think I knew how important it was for me to see Lily with other kids, because I almost started to cry.  I've never had an issue with Lily not really expressing any desire for social contact.  She's content solo, or seems to be, and I can honestly say that has given me no qualms.  But today when she was sitting down next to Lilly with two Els I got that heart swelling (non-medical) feeling and just felt really happy for her.  

And...honestly...If Lily is pissed she'll probably swat the girl next to her and they'll move her or whatever, but I'm going to preserve that image in my head and heart until I hear otherwise.  It was just very sweet.  

Nice way to start my day.

Long Time No See

Anytime I don't blog for a while I look back at it and think...god, there's so much to catch up on.  And strangely, or maybe completely normally...that muchness stops me from blogging anything at all...which feeds itself and etc etc.

So this is a quick catch-up post (no, mid westerners...not fucking catsup...jesus)

The walk went great...EXCEPT...it was pouring.  And I still have some general housekeeping stuff to take care of, including depositing a couple of the checks made out to me and writing a check made out to Autism Connection of Pennsylvania hereafter referred to as AC/PA.  Please pay someone on fiver to create that logo in AC/DC font...five dollars!

I've been struggling with this weird allergy-related (i think) cough for the past four weeks.  I want it to go away.  Lily too has spent the last month and a half in various stages of allergic or general sick-related behavior...coughing, runny nose, stupid sleep schedule...

And that in turn affects me when I choose to do adulty things despite knowing full well that they have the potential to come back and bite me in the ass.

Por ejemplo...

I went to Game 5 of the Pens/Lightning playoffs on Sunday.  It went into overtime and I had been drinking, and (after ubering home) got to bed at around 1:30.  And then Lily got up at about 4:30 and I woke up to attempt to get her back to bed bleary eyed and staggering down the hall...to finally soothe her into slumber at about 5.  I thought to myself...'at least tomorrow is Sunday'.  Cause it felt like it was a Saturday night...and the realization fell upon me like the proverbial hammer blow...my alarm is going off at 5:30 for work.  It's Monday.

Fine...whatever...I'll catch up with my sleep on Monday night, I thought.  And I put Lily to bed around 9.  I put a little Vicks under her nose in hopes that it would ease her breathing.   Then I finished lunches and stuff and probably collapsed into bed somewhere around 12:30.

I heard her stir around 1.  I'm not sure when she woke.  I let her stir a bit.  I was so tired.  I heard some weird sound though, and got out of bed to check on her.  She was sitting up in bed wide awake.  On the bed was an open jar of vicks.  I had left it on the headboard.  It's like I'm new here.  It was on her arms and face and in her hair and on the bedding.  I tried to get as much off as I could and finally got her to bed around 2:30 in the morning.  The alarm rang at 5:30 and I was like...Nope.

I got up and got the kids ready.  I gave Lily a quick bath, attempting to get as much of the vicks off her and her hair as I could and the kids went to school and I sent my boss a text and went back to bed, napping off and on until about 1 in the afternoon.

There are just no guarantees as a parent, and when you make the decision to party...you still have responsibilities to take care of...and there's nobody but you that can carry those out.  fYou choose to pretend that you don't have those responsibilities and sometimes the universe reaches out to gently (or not so gently) remind you that it isn't so.l  So I sort of got stretched thin.  And when I don't get enough sleep...and enough to me is about three hours less than most people...five works typically...six is like sleeping in...my patience gets MARKEDLY worse.

Tuesday she slept all night.  She HAD to have been tired as hell.  She woke up at five, but that works for me...only a half hour until the alarm rings.  I just start my day a hair early.  I got a little bead bracelet in the mail that day.  Something that I thought looked cool and was only $8, so I amazoned it.

Wednesday she slept like shit again and was a huge pill all morning.  Just stupid little stuff all morning...screaming, spitting, defiance...her nose was stuffy, and I'm sure that was a big part of it...coupled with her shitty sleep.

And as each little thing piled up in the stress queue I could feel my chest tighten up and the burn build and she bit through the little bead bracelet and beads scattered across the floor and I had a LITERAL jumping up and down (like you should have seen it.  It had to have been comical) temper tantrum.  The house shook from the jumping (I'm addressing this on the treadmill currently).  And then she was on the bus and on her way to school and I had a day to just be depressed about losing my shit so thoroughly and got home and started all over again...

But she slept fine Thursday night and I woke feeling more or less repaired.  We had a nice morning and I sent her to school happy.

So recap:  I didn't get a lot of sleep.  I lost my patience.  I lost my shit.  I got both back after a good night's sleep Thursday and Friday and I'm back and better than ever.

I had a friend tell me that I needed to be more flexible...that I needed to be more spontaneous.  She was kidding...to an extent.  But I told her then, "Responsibility is the natural enemy of spontaneity."

Ironically I think I COULD be more spontaneous if I was a little better prepared.  If I had plans in place at all times I could probably just go grab a drink or a bite to eat or see a band at a bar or something, but getting those plans in place is...part of the responsibility.  And it's exhausting to have all of that planning in place just to support the possibility that something fun will come up.  It's just not something that I think single parents can do.

And please...no plea for pity here...i get SO MUCH help and support from my parents and Leslie's parents...even from Emma, who watches Lily these days so that I can spread my wings a little.  But I need to keep remembering the consequences for too much fun and too little preparation.  Because the responsibility part is my priority.

Anyway...school is about to end and the kids' recital is only a week away and some of the schedule fullness and stress is hopefully going to alleviate and let me calm down a bit.

I met with Watson (Lily's school next fall) to go over her intake IEP.  It went well.  Tickets are lined up for the recital and I have a plan in place for Lily during the dance.   Vacation is scheduled and paid for.  Steeler season tickets are ordered and paid for.

The last looming thing is school.  Lily's home for the past six years...Marzolf...ends.  I have to write about that separately.  Lots of stuff there.  Lots of emotion.  Lots of gratitude.

But that's for another post.

All caught up for now.  Ish.

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.

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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)