Brittle

Is this...my first post of 2018?  Huh! 

I was just looking back at 2017.  20 posts last year.  That's actually the lowest I've ever posted since blogging.  And it's not that there's nothing to say.  I've been busy.

So...lots to say, lots to talk about...

Prologue:

This morning I was putting peanut butter on my english muffin and I thought I might have dropped a bit of peanut butter in my coffee, which was sort of in the line of fire, peanut butter ballistically speaking.  This is not to say that I fire peanut butter at my english muffin with some sort of peanut butter gun (*note to self:  see if peanut butter gun has been invented yet), it was just that a little bit dropped off the knife and landed (maybe?) in my coffee.  The surface of the coffee was moving, but I couldn't remember if I'd bumped the mug, or if what I THOUGHT happened actually happened.

I decided at length that if the worst thing that happened was my coffee had a hint of peanut butter flavoring it would be a nice opportunity to see what kind of pairing it made.  I took an experimental sip of the coffee.  Not a hint of peanut butter.

This morning was the nice happy Lily sort of morning I really needed after last night. 

Chapter 1:

(4 weeks ago)

I got a call just prior to Christmas from an agency with a possible nurse for Lily.  One lesson I learned from past meet and greets were that if you schedule conveniently you lose.  Looking a week or week and a half out means that person has time to get OTHER interested offers of meet and greets and I've had several who just didn't show up because they'd already accepted other offers before they even got to meet us.  I couldn't schedule the same day, but took a half day off to do the meet and greet the next day.  She showed up around noon.  She nurse seemed nice.  She had a lot of experience.  She confessed that she had to be gone before 2:00 in the afternoon to go to another meet and greet (so glad I didn't wait), and although previous meet and greets had only lasted 15-20 minutes, she was probably at the house for an hour and a half.  In the end she had to rush out the door to make it to her next appointment.

She accepted the position a couple days later, then we scheduled her clinical supervisor to visit and go over paperwork after the new year and the holidays were over.  All that went off more or less without a hitch, and the nurse started on January 3rd.

As you might imagine, I was extremely relieved.  Knowing that a nurse had been found prior to Christmas was such a gift.

Chapter 2:

(Three weeks ago)

My BSC (Behavioral Specialist Consultant) quit.  She quit because she is moving, and so her last week was a week ago.  The agency for the BSC called to tell me they don't have someone to replace her and asked whether I wanted to wait, quit, or be transferred to another agency.  This pissed me off.  Lily's behaviors recently have been worse not better, so to have an "expert" able to put eyes on her and work through those issues is a great way to keep me from...well...from losing my fucking mind.

In all honesty, I was not impressed with this BSC.  I didn't ever really feel like she had her finger on Lily's pulsebeat.  She wasn't a great fit.  So I'm not exactly weeping that she's leaving so much as I am weeping that they have nobody else to replace her.

So I thought, okay..."I'll go with option 1...wait".  I figure, fine, let them hire a new BSC for the case.  I like the TSS (therapeutic support staff) that worked under the BSC, so as long as she continues to work, I'm good.  The agency called to express some concern that the TSS wouldn't be able to work unguided by a BSC, but I more or less said...then find someone to oversee her in the interim, and they more or less agreed.

So last week the TSS quit.  She said she felt uncomfortable working without guidance from a BSC so this is her last week with Lily.

This pissed me off all over again.  Lily has been tough.  That's why I have them.  If Lily was easy...if raising Lily was like raising Emma...I wouldn't qualify for the support they provide.  If raising Lily was like raising Emma I wouldn't need or WANT the support they provide.  So at this point I'm feeling a bit abandoned.

But hey...I've still got that nurse.  Which is nice.

Chapter 3:

(Two weeks ago)

I'm raising TWO young women now.  The ticking red time bomb went off and was fine.  I have a nurse after all!  She spotted it (no pun intended) and we talked it out.  We discussed the plan.  We executed the plan.

I don't know how cyclical she'll be initially, but I'll monitor what I need to monitor and try to see if I observe bigger behavioral issues at certain times relative to others.

Her outbursts now are more...violent.  I really hesitate to say that word.  I don't like how it sounds.  I've been reading autism blogs for years.  I don't want Lily to be considered "violent" or "dangerous".  I've read the blog posts about violent boys (or girls).  They scare me.  She's just a little girl.  But...the ineffective slaps of years gone by have become more...deliberate.  Now instead of ineffectually swatting the air near me when she's really upset about something I'm making her do...she'll target me...aiming and slapping.  Ultimately it's still delivered with the low muscle tone of a slightly behind-development 12 year old girl, but she's pursuing it.  When the TSS really upsets her she will follow her and try to slap her if she misses.  This is all new.  And not wonderful as you can imagine. Which, probably, is why theTSS quit, if we're being honest.

I unwillingly project her six years into the future, a "violent" 18 year old...responding to a policeman or a stranger with slaps and bites..."dangerous and violent"...an adult now...charges pressed.

I slam a mental door shut on that sort of speculation, compartmentalizing it.  When will she be out of my care, after all?  When would this situation come up, where I wasn't there to keep her from hitting someone who didn't understand that she really doesn't know any better. Because I'll always be there for her.  Right?  Always...

Fine...even if I get too old, there's always her sister.  Even though I promised myself I would never make Emma her caregiver.  Would always make sure Emma could lead an independent life free from the responsibility her parents chose if she wished.

But she could help, right...?

Chapter 4

(last weekend)

I went on a date.  Oh...I'm dating by the way.  That's just a whooooooooooooooooooooooooole nuther blog post (or...probably not actually).  Sorry.  If you thought this was about dating...it's not about dating.  But...I went on a date.  I left Emma in charge.  At 15, nearly 16, she knows Lily probably about as well as all but maybe five living people.  She's the right age.  I trust her.  She loves her sister.  She's done it before.

But the second course of my meal was delivered to my table, I got a text from Emma.   "Lily is acting out a lot and now she is full out sobbing and idk what to do".

I tried from the table to text suggestions, apologetically focused on my phone as I communicated with Emma.  This served to piss EMMA off, who apparently interpreted my suggestions as a criticism of how she was handling the situation.

I texted my parents.  They were already going to my house anyway.  Emma has never felt really comfortable feeding Lily, and she needed a ride to dance, so my parents had agreed to watch the Steeler game from my house, feeding Lily and giving Emma a ride.  They weren't there yet.  I asked them to hurry.  Emma had already texted them.

By the time they arrived Lily had settled back down.  The upset happened in the bathroom.  She didn't want her pullup changed.  If she can't hit you, she starts grabbing things...toilet paper, towels, shower curtains, garbage...anything she can reach. 

Emma handled it as best she could.  But I was forced to consider...is it fair?  Is it fair to ask Emma to babysit Lily anymore?  If she's truly becoming "violent" is that something I can, in good conscience, ask of Emma, a 15 year old?  I...don't think so.  Unless and until I can get Lily's latest behavior more or less under control, I have to save Emma for an absolute emergency.

Chapter 5

(two weeks ago (again))

I met with Lily's developmental pediatrician.  Her behavior had seemed better at that point.  At least I thought so.  We talked about all the blood work he tracks.  Zinc and Calcium, gluten, ratios, indices.  He asked me to check with a specialist about something he called a "movement disorder".  He asked me to check with another specialist about some vision disorder.  I don't have my notes handy.  I can't refer to them.

To add to the running tally that's...a neurologist, a neurosurgeon, a geneticist, adolescent medicine, a developmental pediatrican, a vision specialist, and a movement specialist.  That's in addition to the primary care physician, eye doc, and dentist.  I just sort of chuckle mumbled...."mmmmooookay dokey!"  Load me up, motherfucker!  Let's make some appointments!  WOO!

BUT...he gave me sort of his take on a plan of care.  In a nutshell...before doing anything else, get the seizures managed.  This was placed as sort of an order of magnitude higher in the grand scheme of things.  THAT...is helpful.  Okay, so regardless of whatever else I need to do, step 1 is getting the seizure disorder under control. 

And although Lily hasn't had what anyone (caregiver du jour) might consider a seizure in months, it's not currently being "managed".  Still waiting for a prescription from the neurologist for that.  Once that's done, we can move on to the next thing.

What might this new seizure med do to/for Lily's behavior/sleep?  No idea.  Each new doctor's visit is a new lead to pursue.  Each new discovery is only the stepping off point for a new investigation.  Oh...she has THIS?  Check with this doc, and run this scan, and we'll meet again in a few months.  Months pass and a bit more of the puzzle of Lily gets revealed but ultimately we just see...more puzzle.  This process has been going on for 11 years.  11/12ths of Lily's life, and the percentage will just increase over time.

Wish:  One doctor who could look at it all and tell me what to do for her.  One doctor that could tell me that this behavioral component is probably the result of this aspect of her condition and the best thing to do is X.

But there isn't anyone who can do that.  That person doesn't exist. 

When I was five I remember I was outside our home in Culbertson, Montana with a broom.  I was sweeping back and forth across the dirt beside our sidewalk.  I found it unsatisfying because I kept sweeping the dirt and although it was fun to watch the plumes of dust boil around me (god my laundry must have been a fucking nightmare) no matter how much dirt I swept...there was just more dirt underneath.  I mean obviously.  Because I was literally sweeping the bare ground.

My point is...that's where I feel like I'm at right now.  I'm trying to clean up...see results...advance...progress...show improvement...ANYTHING.  Just more dirt.

Chapter 6

(Three years ago)

Sorry mom.  I'm going to bring this up again.  Please understand this is not just something my mother said.  She did say it though.  And I instantly blew up.  Or maybe I didn't (I can't actually remember).  Maybe I just boiled about it and we talked later.  I think I did though.  I remember we talked about how frustrated I was after the fact and she apologized and we made peace and she understood.  But it wasn't just her...it was EVERYONE.  EVERYONE does this.  But this story is about the time SHE did, because it's just...well it fits the above better than any of the other stories.

Lily was playing on the special needs baseball team.  She didn't really love it.  She was an unwilling participant in a sport where participating is basically the whole point.  And so ultimately I stopped forcing her to go. 

Lily was funny to watch at times, although honestly I was mostly stressed the whole time because the skill level/competence of the volunteers that they paired with the kids like Lily was highly variable.  And not everyone had great success with her.

Anyway, I remember it really took a lot to get Lily to go to first base after a "hit".  She'd hit the ball hand over hand and then everyone would yell "RUUUUUUNNNN!" and she'd walk, slowly, with some stops along the way, before she would finally stand on first.  This was mostly amusing, because Lily doesn't do what Lily doesn't want to do, and so it's easy to reframe the situation as Lily just being adorably strong willed and not interested in hurrying if she doesn't WANT to hurry.

My mom earnestly said to me that we needed to work on Lily running to first.  And I think I blew up.  I think...(honestly, i probably already blogged this, but I couldn't find it)...I basically said..I have a hundred other goals that are more important than 'running to first' that I'm making no progress on.  She's not potty trained, she can't tie her shoes, she can't write, she can't read, and you want me to work with her on running to fucking FIRST??  Let me add that to the list immediately! (sarcasm).

It was the combination of every thing we "need to work on", and everything we weren't seeing any progress on.  It was the "one more thing" that was ultimately meaningless and probably half meant in jest, that if it had been almost any other kid...or any other NT (neurotypical) kid, would have been no big deal.  Sure...add it to the pile.  But instead, because it was Lily, it was...ARE YOU KIDDING ME???

 And so we talked about it and I think my sense of powerlessness and frustration was adequately conveyed and mom and I were back on steady ground again.

But I bring the story up because each of these doctors or behavioral specialists always adds just one more thing in the vacuum of medicine that says "I only care about those things specifically under my specialty and nothing else".  It's the...why don't you go get her checked out for movement disorder.  It's the...we need to see about this visual disorder.  It's the...let's get her seizures under control first.

And, she's still more or less the same little kid she's been since she was three.  Many of the same behaviors.  More or less the same skill set.  In hindsight it's really hard to see any progress.  I'm sweeping bare ground and trying to clean it up.  It's not fucking working.  Nothing is fucking working. 

Or at least that's how it seems when things get dark.

I long ago stopped trying to mold Lily into something she wasn't.  Although I may not know what she someday might be, I can see relatively clearly some that she will not.  She will never be independent and on her own.  She will be in someone's care.  So we work on goals, but I don't care about goals anymore.  I'll never say "she can't" without seeing if she can, but I no longer care if the answer is "she can't".  She's Lily.  I love her unconditionally.  Whether she ever EVER learns to read or write or tie her shoes.  Whether she's every fully potty trained.  Whether she becomes violent toward me...I love her.  No matter what.

Chapter 7

(Last night)

At 2:23 I got a text at work from the nurse. 

"Jim I don't know what you want to do.  Lily has been in the bathroom now for almost an hour throwing a fit every time I try and go near her.  It's hitting, scratching, trying to bite me.  Do you want to try and call on speaker phone to talk to her or is it okay if I ask Emma to help?"

Remembering the weekend, where Emma had struggled with something similar, I asked Emma instead to facetime with me and talked to Lily via her phone/video.  We couldn't get her out.  The nurse couldn't get near her.  Lily kept grabbing her glasses...hitting...so much spitting.

After trying a few things, I gave up, took the rest of the day off and drove home from work.  She was still in the bathroom when I got there.  I got her up and changed and in bed and told the nurse to chart and go home.  We talked for a while about strategies.  Talked for a while about things to do the "next time".  She was apologetic.  I'm sure she wished she'd been able to handle it.  But...she hadn't.

I asked my parents to shadow her for the rest of this week, stepping in to help if Lily got out of control.  Letting Lily get used to the nurse's presence.  Maybe there hadn't been enough transition to develop the relationship.  Maybe she didn't "recognize her authority".  I don't know.  I do know that Emma had almost THE EXACT ISSUE a day or two prior and that certainly was not a case of developing a relationship.

Maybe it'll help.  I'm worried the nurse will quit if it doesn't get better.  I'm powerless to make it better.

Lily was spitting so much last night.  It infuriates me.  Gets under my skin.  With slapping, scratching, spitting and biting, I was at the end of my proverbial rope.  Strung out.  No patience.  No temper.  YELLING.  So much yelling.  Then things would be okay for a while...then back to BAAAAAD.

And I thought again about how hard it is to do this shit alone.  Not alone alone...I mean, in this post I rattled off 12 possible doctors, a nurse, Emma, the grandparents...but I mean as a single parent.  One of the things that Leslie and I did for each other was tag out.  Tag out when you've had all you can take.  Tag out when you're too tired.  Let ME take over for you.  YOU take over for me.  There's no cavalry here anymore. 

And I was depressed.  Powerless to stop myself from projecting once more into that dark future.  If a nurse can't care for my daughter when I'm not around, who can?  How can I always be around if I need to work?  What will I do when I'm too old to care for her?  And I started thinking about medications...something to calm her, mellow her out.  You know...all the medications I SWORE I would never use.  And then I think...can't try any medications until you get those seizures under control.  JESUS.

RTF (residential treatment)??  Can't thing about that.

I felt like writing last night.  I felt like sleeping last night.  I felt like reading last night.  I felt like crying last night.  I felt like exercising last night.  I felt dull and sad and...emotionally brittle. 

I sat in my chair in front of the TV and turned Rick and Morty on staring at it until I nodded off.  Eventually I collected myself and turned off lights and put away dishes and refilled my water and went to bed.  I finally got to that place I thought didn't exist.  The..."I don't have time to __________" place. 

Each thing excludes all the others.  I wanted the cathartic unburdening of soul that comes from writing.  I wanted the mindless entertainment of reading.  I wanted the frustration burning exertion and improvement that comes from exercise.  I wanted the self indulgence of just letting loose a sob or ten.  But I knew that Lily would be up at 4 a.m. and I hadn't slept well the night(s) before.

So I slept.  And Lily woke at 4, and we sat on the potty and then back to bed.  At 4:15 I went back in and settled her down and she fell asleep until I woke up around 5:30.  Perhaps not quite refreshed, but at least in a much better mindset.

Chapter 8:

(This morning)

The snow fell steadily last night, covering my driveway with maybe two inches.  I knew I had to get out and shovel it, but it's hard in the mornings...half watching Lily, half outside shoveling snow...and I didn't know how Lily would be.

But she was angelic.  Happy.  Bubbly.  Asking for things and then satisfied with those things once given.  Compliant.  She was upset about having to put on a bra, but what woman isn't?  She got over it.  Ate well.  Was excited for the bus.   She was so pretty in her new shirt and pants from Christmas, her hair freshly butchered (fuuuuuuuck...I really need to learn how to cut bangs) playing "What's in the lunch box" on her iPad while I puttered around the kitchen.

I cleaned off the driveway just in time for the bus to pull up to the driveway, the brakess squealing protest as it slowed to a stop.  I put the shovel down, walked inside and collected Lily.  We walked happily down the driveway and I waved her off to school. 

School can handle her.  School knows how to manage her and keep her happy.  I feel better knowing she's on her way there.  Part of yesterday was that it was the first full day of nurse care.  No school.  Tonight my parents will be there.  I feel better knowing my parents will be there.

I'll talk to the school.  See if they have suggestions moving forward.  See what they suggest for the nurse.  The agency is already talking to me about a new BSC and TSS.  We'll see.  I'll reach out to the neurologist today and push them on prescribing the seizure med.  Plan your work and work your plan.  We'll be alright.  Dig out of the snow.  No easy answers.  No manual for this.

But...I have to do better.  Whether that's just getting more sleep?  I don't know.  It can't hurt to be less exhausted when dealing with difficult behavior.  So I'll start there. 

It'll be alright.

Epilogue:

(This morning)

The cleaning woman comes later today.  I tidied a few things up.  It's ironic, having to clean for the cleaning woman...but here we are.  I picked up my pajamas (tshirt and shorts) and stuffed them under the pillow of my newly made bed.  I put the unfolded laundry baskets on the bed so she could mop.  I tidied the bathroom as I brushed my teeth and went downstairs.

I hurriedly threw my lunch in the lunchbox ("What's in the lunchbox" I intoned, like the game Lily had been playing...leftover pizza, if you were wondering).  I ran down to the basement and transferred the laundry to the dryer, tossing a new tidepod (don't eat the tide pods, kids) in the wash before adding the last load of dirty clothes, shutting the lid, and turning it on.

On the counter was half of my coffee.  I'd gotten so busy I hadn't finished it.  I gulped what I could...and immediately spit it all over my counter and floor as something warm and soft slid inside my mouth.  My brain immediately recoiled...slug? cockroach? 

Peanut butter.  I had forgotten about the goddamned peanut butter.  It had remained, fully formed, a mystery globule in my half-finished coffee. 

Bad pairing.  Do not recommend.

FIN

Sink or Float? Surviving the Holidays Like Goldfish Can't

I love some of the traditions of Christmas.  The decorations.  The family-specific rituals each of us creates for our families, borrowing from our parents, borrowing from our spouse.  Tradition anchors my memories of Christmases past. 

But tradition can also be the anchor that drags our spirits down. The holidays are stressful for everyone. We're all trying to jam so much into them. And it's all good stuff. Like...how is it that we reach a place where you try to jam so much good feeling and holiday spirit into it that it ends up going so wrong and creating so much stress? It's like eating too much because you love it.  Like we're fucking goldfish and if it's in front of us then we MUST eat it until we gorge ourselves and die.  Maybe not EXACTLY like goldfish.  But you get it.  Christmas cards and parties, decorations and obligations, finding the right gifts and getting them wrapped...when it's all over and the tissue, bows and wrapping paper drift gently across the gift-strewn wreckage of your house like tumbleweeds across a post-apocalyptic landscape, maybe then you can look back and smile at all the joy. Or maybe not. Maybe you'll look ahead to the clean up. The putting away. The diet. Whatever.

It's okay to ditch the anchor. It's okay to create a happier healthier holiday for yourself and your family.  One of the best and most ironic lessons autism teaches is to abandon traditional parenting methods in the face of  neurology and look for new/different ones that work for your family. It teaches flexibility in the face of rigidity.  It teaches us to look for a "better" way, instead of the "traditional" way. To focus less on the tradition and more on the results. What works for some or most DOESN'T work for you.  It's okay to stop trying to make shit that doesn't work work.  I'm not saying this very well no matter how many times I rephrase it...if you don't see the irony, trust me it's there.  I know irony. 

It's okay if you didn't send Christmas cards.

It's okay if you didn't make cookies.

It's okay if you buy the "weird" present that your child wants instead of the "normal" present that you WANT him/her to want. 
It's okay to skip the holiday party because sitters are impossible to find at christmas.

It's okay to skip church.

It's okay to decorate less.  Or decorate differently.  Or decorate late.  Or skip decorating.
It's okay if your child didn't sit on Santa's lap. 
It's okay if your gifts are in gift bags instead of wrapped in paper.
It's okay if you give gift cards or money.  

It's okay if you can't afford to give what you really WANT to give.

It's all okay.  Celebrate in a way that actually feels joyful.  Abandon the stress and the rigidity of tradition if it makes you and your family happier...healthier.  How many of your traditions are for you?  Because it's the way YOU were raised, not even because you or your kids want/need them?  How many of your traditions do you KNOW you actively have to push energy into almost constantly in order to maintain?

It is a week before Christmas.  Less than.  I got the Christmas cards out.  I'm making Christmas Eve dinner.  I have the gifts bought (not wrapped yet).  Decorations have been up for weeks...two Christmas trees.  Teachers' gifts are on their way to school in my daughter's backpack.  Two Christmas parties yet to attend; both are this weekend.  I'm living the dream over here in Single Dad Autism Parent land.  Except that I'm fucking stressed out.

I am stretched THIN.  I could do it, so I did it.  And now I'm at the end but I don't have anything left.  Not going to church on Christmas Eve this year.  Even thinking about it causes me stress.  So I'm not doing it.  Because I'm done.  DONE.  This Christmas will be awesome...probably in the way that winning your first marathon feels like...YES!!  I WON!!  Now I'm going home and I never want to put on another pair of running shoes again.  I didn't take my own advice...until now I guess.   

It's more important to me to maintain my sanity and my holiday cheer than it is for me to go to Christmas Eve Mass.  I probably won't take my decorations down until March.  Maybe not.  Maybe I'll leave them up ALL FUCKING YEAR.  Christmas cookies that Emma and I were going to make?  Meh...maybe. 

My point...my POINT is...you don't have to get to this place.  You don't have to jam all this fucking cheer down until you bloat like a goldfish and float to the surface of the holiday aquarium.  LET GO of the idea that you NEED to jam all this shit into the holidays in order for it to be...HAPPY.  BECAUSE...are you happy?  NO!!  You're fucking stressed out!!  I know!  I'm in your tribe!

Okay...anyway.  I'll close by saying...I.  LOVE.  CHRISTMAS.  Love it.  It is my absolute favorite time of the year.  And I love THIS Christmas even if what I've written above might make it SEEM like I don't.  And even if I AM capitalizing every third word so you can see how emphatic I am.  I love this season.  But it seems to me it is a bitter irony that this season we love can be destroyed by too much...cheer.  So...learn the lesson that having an inflexible child can teach...try a new way to reach holiday happiness.  Ditch the traditions that only LOOK good on Instagram and Facebook and find NEW ways to reach for something less...surface.

PS...I'm so torn about the fact that I'm comparing traditions to an anchor that holds you down, and then comparing them also to fish food that bloats you and makes you die and float on the surface.  We're floating...we're sinking...WHAT IS THE FUCKING ANALOGY JIM??  SINK OR FLOAT? 

I don't know...But if "It" taught us anything, it's that floating is bad.  So whatever.  Sorry about the analogies.  Focus less on tradition and more on happiness.  Create true happiness for yourself even if it doesn't make for a good facebook pic. 

The actual End.

Lookin' Up

I've been doing a pretty good job of watching what I eat.  I've been doing an "okay" job of getting exercise.  I guess from my perspective any concerted effort to get any exercise is better than the complete LACK of that I was previously getting.  It's like Lizzy used to tell us (a dietician at work who gave us a 6 week brown bag series on nutrition)...it's about making better choices. 

So I've been trying to get out and walk for fifteen minutes every day at work, but I haven't been as diligent at home.  I'm not beating myself up about it, I'm still eating much better, and I'm focusing on doing things that help my overall mental health, so if I don't get a walk/run in on the treadmill it's not the end of the world.

One of the things I've been doing is sampling vegetarian food choices.  I'm not going vegetarian or plant-based, or whatever...at least not yet...but I'm just seeing what the dark side has to offer.  Since 90% of my dining is Asian, it's amazingly simple to just make the meat disappear and still have a great entree.  Other things I'm doing is attempting to limit my portion sizes to something more...reasonable.  I can eat a dinner sized portion of Hunan chicken, but really it's probably three full servings worth of food.  So I'm trying to just cut it in half and ask for a doggy bag for the other half so I'm not tempted.

I'm back where I was when my pants stopped fitting three weeks ago.  So now that I lost the six pounds I gained without even realizing it...and since I'm already in eat right and exercise mode...I'm going for the next five.  I think ten more total and I'll be content, but for now I'm taking it five at a time.

Myfitnesspal is limiting me to 1,750 calories today, which is actually not that big a deal to maintain, although I do find myself having to talk myself down from grabbing a snack out of the pantry, or at the very least, forcing myself to log that information into the app so that I can see how much damage I'm doing.  In some cases I end up going to bed with a little cushion (not literally, though I do use a pillow), in some cases I'll treat myself to a little something just shy of the goal limit, and in other cases I'll go a little over.

We went to visit my folks last week and mom made steak and brussels sprouts in a cheese sauce, and served wine...and then finished with a chocolate chocolate chip cookie sandwich with fucking marshmallow fluff in between.  So yeah.  Kind of hard to ALWAYS stay under budget.

Stress is less, I think.  Lily is still in the throes of some sort of metamorphosis that is not always super pleasant (like getting spit on or bitten, for example) but she's pretty happy and easy for the most part. 

Emma is more focused at school lately and I'm seeing her grades reflect that, and I've found there's an inversely proportional relationship between her grades and my stress level that has probably been my biggest single source of stress these past six months...yes...autism/money/election included.

My big "project" is done, and I'm eager to show you all what I was working on, but I can't until the recipient receives it, lest I ruin the surprise.  Now I have to pick some new thing to focus my creative energies on.  Room remodel?  Lamp project?  Drawing for Emma? 

I like my new foci, and I feel like they're helping me steer the boat.

Life is feeling good right now and I'd be smelling the roses if I hadn't contracted some sort of cold/flu from Lily and gotten a stuffy nose.  And I'm out of tissues at work. 

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.

Still Working Out the Kinks

I'll try to make this short and relatively sweet.  We're juggling doctor's appointments and dance classes, homework assignments and softball games, as I'm sure most of you are.  Honestly, I think we've dropped a ball at least once every day this week.  

Emma missed a homework assignment, I failed to include Lily's homework in her backpack, showers are being skipped, homework is being put off. . . we just haven't quite gotten on top of the schedule yet.  We still just haven't worked out all the kinks.

But during the infrequent lulls there are still moments where we can look around us and watch as other parents around us deal with the same sort of stress and disorganization that we do and take some comfort in our solidarity.  Three days ago, waiting for the bus to come pick Lily up I observed this on the neighbors' sidewalk.  Booster seats.  In the rain:

Please ignore how shitty my lawn looks right now.

So I guess it's not just us.  

Lily has had a relatively spectacular first couple weeks at school.  We get a communication log back daily that highlights the various segments of her school day: lunch, recess, specials, circle time, bathroom breaks, etc.  It's been nice to see the good comments coming back.  In the past three weeks she's had a total of two accidents.  Contrast this with kindergarten last year at this time, where you might see two or three per day on a bad day, and none or one on a good day.  

She's attending to task better.  She's better behaved (tenex at work?). . . now we just have to capitalize on that increased attention and get some book learnin' in her!  

I took this picture yesterday before school.  

Continue to ignore the shitty lawn.

Leslie generously commented that perhaps they were drying in the sun from the previous day.

Lily got a note back from school last night.  

S&M today!  YAY! (nice double entendre in the title, right??  RIGHT???  See what I did there?)

Is it just me, or are kids growing up WAY too early these days?  And is this really appropriate?  A friend asked if this is the sort of thing we put on our IEP.  It is not.  

I'm sorry I have the sense of humor of a 12 year old.  But really. . . S&M today!  This sheds new light on the controversy of whether or not restraints have a place in our schools.  Probably I still won't bring it up at our meeting though.

I took this picture today before school.  

I cropped out the shitty grass.  

Heh. . . yeah, it's not just us.

How I Spent My Summer Vacation

I have trouble writing about the bigness of vacations because so much stuff happens, but most of it is the day-to-day that really doesn't lend itself to an interesting blog.  So I'll touch on it a little, then I have to get back to writing Chapters 4 - . . . infinity of the Bigger Story. . . story.

We vacation in Nags Head.  This year we decided to stay Sunday to Sunday.  If you vacation Saturday to Saturday and understand what Saturday beach traffic means, then consider saving yourself the knuckle whitening stress of bumper to bumper traffic and go Sunday next year.  It worked for us.

Friday while I was at work, Leslie got  most of our stuff ready to go.  She packed the kids, herself, the overnight bag, the groceries, toiletries and bedding.  I packed myself.  50-50.  That's how we roll.  Anyway, she packed during the day, unless she was working from home on Friday and her coworkers are reading this, in which case, she packed late late that night after working a full day in our home office.  But anyway, when I got home it was all packed.

My NON tongue-in-cheek 50/50 piece comes from my roll which is. . . take the packed stuff and put it in the car.  She still does the lion's share by a fair margin, but packing the mini van sucks.  I opened the garage door and started packing.  I think I got distracted because at some point our neighbor knocked on the door and said. . . "did you know your garage door was open and that your minivan trunk is open?"  and I responded that we were going to the beach and that I was packing.  And it took longer than it probably should have to convince her that I wasn't lying because I think the minivan was empty still and the trunk lid had been open for a couple hours.  REGARDLESS. . . I got it packed.

 We had a few last minute things to pack in the morning (shower stuff, jammies, slippers, etc) then we were off to the races.

EXCEPT THAT. . .

Lily was melting down.  It started about an hour before we left and nothing could get her back under control.  She was whining, wouldn't eat, wouldn't go on the potty, was angry at being fastened into the car and slapping at Leslie while she pushed her into place and had no interest in the movie we'd put into the portable DVD player that is often the savior of long car rides.

"She'll calm down once we're driving," we told ourselves.

We got both kids in the car and my wife was grabbing something from the house and came out just in time for me to turn the key in the ignition and for it to go. . . "Clickclickclickclickclick" instead of "Runinininin-vroom".  From outside the minivan her eyes got wide and she mouthed, "what's that?" and I calmly replied, "What the hell do you think it is?" at the top of my lungs only the "hell" part was in my head and not out loud because the kids were sitting there.  I tried again. . . "Clickclickclickclickclick".

"Is the battery dead?"
"Probably," I replied, before attempting to make it about her, "have you ever had your battery replaced?"
"I don't think so."
"Batteries usually last 5 years or so." In my head I think I was trying to make some sort of passive-aggressive argument for this being her fault as a result of her failure to replace the battery before it went dead.  I had conveniently compartmentalized any memory of the hours I'd left the trunk open the previous night.

I got out of the car ran into the house for the keys to MY car.  I opened the trunk and got out the jumper cables, popped the hood, and clipped the red to plus or the black to plus or something. . . I can never remember.  Ultimately it doesn't matter as long is plus is to plus and minus is to minus, but whenever I jump a car my brain goes back to some partially obscured memory of a conversation with my father that goes like this:

"If you fasten the cables to the wrong posts your battery will explode!!!"

And that's all I remember.  So I fastened the battery up and turned on the car and then popped the minivan hood and followed red (+) to red (+) and black (-) to black (-).  I first clanged the two clips together though, because it sends out a shower of sparks if the battery is connected to them securely, and also (and, I'll admit, primarily) because it looks so badass when the sparks shoot out.

From inside the minivan, Leslie turned the key to a satisfying, "Runinininin-vroom".  While the cars were connected we talked about what we'd do if it didn't charge the battery (for whatever reason) and calmed Emma down (she was getting upset because this is NOT the way family vacations are supposed to start).  I disconnected the jumper cables, closed the hoods and put my keys back in the house.

We have a AAA membership and I know they'd have come out and replaced the battery if push came to shove, but while my wife ran in the house to try the still angry and crying Lily on the potty again, and after I felt a suitable amount of time had passed, I shut off the minivan, prayed to the flying spaghetti monster, and turned the key. . .

"Runinininin-vroom".  LIKE A BOSS.

At this point my wife was back, placing the struggling and upset Lily back in her carseat before climbing in the van herself.  She got settled in and I said, "Just a sec," and decided to make a last second pit stop myself before we took off.  Only. . . only I had the minivan in reverse and was just holding us in place with my foot on the brake.  When I opened the door and climbed out, the van started moving backward and Leslie shouted, "Jim!"

I jumped back into the fucking van.  It was a "fucking" van at this point, despite every single solitary issue that had gone wrong being solely my fault, and shoved down on the e-brake before having the presence of mind to push the brake and bring the van back into park.

Shovels and brooms and my daughter's 10U softball banner (inexplicably still hanging in our garage months after the season ended) had clattered to the floor of the garage and I had to pull back inside far enough that the door wasn't wedged open by the crap still hanging on the wall.

I wanted to throw stuff.  I got out and moved all the crap out of the way and then just said "fuck-it" and walked into the house to pee and cool off before returning to the van to leave.  Emma was crying at this point.  "This is NOT how family vacations are supposed to start!"  Lily continued her own tearful agreement.

I took a long deep breath and climbed back into the van before putting it in reverse backing out.  I felt the van bump something and made my peace with it (whatever. . . the car runs over it, we pick it up later) . . . until stuff started to snap and break and then I was like. . . NOW what?  At this point I started laughing, because at a certain level of stress you just top off and start to giggle like a school girl.  Not giggling madly. . . just laughing at the comedy of the situation.

I got out. . . I had shattered the push broom and bent into a 30 degree angle the handle of (and this made me a little sad) the steel core snow shovel we had gotten during "Snowmageddon" of two years ago.  I kicked the broom remains out from under the minivan, tossed the shovel to the front of the van and climbed in.  While I was out Leslie had started laughing and Emma, still crying, was saying very forcefully, "It's NOT FUNNY" and Leslie was attempting to calm her down.  Lily continued to whine and cry unabated.

Eventually we closed the garage door and drove, and although Lily did NOT calm down once we started to drive, she DID calm down about 30 - 45 minutes later with the aid of some fruit snacks or gummi bears or something, I can't remember.  Leslie handled that part.  Emma also settled in and just hoped that the vacation would get a LOT better and end more happily than it began.

And it did. . .

The End. 

On Stress, Sometimes it Ain't Easy Bein' Cheesey

I recently read a blog about the stresses of air travel with an autistic child.  I commented, but blog life apparently mirrors real life, and, like the people who listen to me prattle on, the automated blog comment moderation software said, "your comment is too long".  It recommended I break it up into multiple comments, which I dutifully did.  Essentially, the comment was about stress levels, and why we often overlook the stress of situations because we mistake the duration of a stressful event with how stressful it will seem to us overall.

Do you eat Cheetos? Bear with me. The best Cheetos, in my opinion, are the Cheetos at the bottom of the bag. The cheetolettes, let's call them. The cheetolettes are the tiny little nubs that have the same magically delicious (apologies to Frosted Lucky Charms (TM)) orange cheesey powder on them. . . but less puff (the vehicle that transports the deliciousness to your mouth). So the RATIO of deliciousness to puff or D/P is much higher. There's more cheeseyness. . . less puffiness.

Looking at it from a stress standpoint, you might assume that in a two leg flight, composed of a short, less-than-two-hour flight, and a long 15-hour flight, you would really need to get mentally psyched up for the 15-hour flight because the sub two-hour flight would be just a hop skip and a jump (as the blogger did), over before the shit hit the fan. But what you'd really have is all the stresses of a 15-hour flight. . . security check, waiting to board, boarding, sitting, drink cart, landing, debarking. . . compressed into an evil little two-hour cheetolette flavored with powdered misery. Your ratio of stress/duration would be MUCH higher. And unlike the joy you get from a cheetolette, the flightlette delivers nothing but pain.

Now if you're excuse me, I have to go buy cheetos.