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tag:blogger.com,1999:blog-68731823084690511032020-01-18T05:00:53.029-05:00Just a Lil BlogThe true life adventures of an autistic little girl, and her big sister.Anonymoushttp://firstname.lastname@example.com:blogger.com,1999:blog-6873182308469051103.post-3449079884482397152019-09-10T11:37:00.001-04:002019-09-10T11:38:05.865-04:00Laundry and AsksOne of the things that being previously married did NOT prepare me for was how much granularity there would need to be between a t-shirt, a running t-shirt, or a hanging up "nice" t-shirt. Every time we do laundry the decision-tree my brain runs through in order to determine what drawer or hanger (also, hang on top (normal clothes) or bottom (I've gained a couple pounds clothes)) each item must be properly housed inside, approaches legendary-oak-growing-in-the-town-square proportions. That's not fair. There are really only three branches to the shirt tree. Three branches to the leggings tree. Two branches to the tank top tree. etc. But too many fucking branches.

I do recognize, that this also applies to me, to some extent, but you'd think a Chem E graduate in his 40s (clinging tightly to this for a few more weeks...grasping to it) would have little difficulty determining whether these are: Running leggings, everyday leggings, or lounging/painting leggings.

I put clothes away this morning after you left, Angie, if you're reading this. See? You really DO inspire me every day.

MEANWHILE...

I have a bone to pick with you sons-a-bitches and your prom/homecoming "asks". Each ask is a bit more convoluted and "clever" than the last, and requires a bit more work to complete and...and this is the kicker, people...the fucking parents do them. THE PARENTS. This is just like every science project my kid has ever done, but it's for a damn DANCE!

Emma got asked to Hoco by her boyfriend. Yes, boyfriend, and no...I can't elaborate. I found out that his mom did his ask sign (He also gave her two dozen roses, so I'm sorta cool with him right now) while I was vehemently arguing AGAINST helping Emma do her friend's boyfriend's ask sign. (He asked her nicely, gave her $20 for supplies and told her to keep whatever was left for gas money). So yeah...I did Emma's friend's friend's ask sign for him. I mean...Emma and I did.

Also...ALSO...you know how she got me to do it?? And don't think I didn't see through this shit INSTANTLY (yet was powerless to do anything about it)...she said, "I love it when we do this kind of stuff together, dad."

Well jesus. Hope you liked your goddamn ask sign.

MEANWHILE...

Lily is settling back in to the school schedule. It hasn't been easy, but it hasn't been exactly hard either. I guess when you do something enough times, even if it seems difficult to someone who hasn't...it's just...the way it is. She remains happy, healthy, and very Wiggles focused (but also Frozen focused...because branching out).

Lastly, we're all settling in now after the wedding. Wait...shit...did I post about getting married? GOD I'm getting old (still in my 40s, still in my 40s, still in my 40s). I'm going to hit post on this and then have to GO BACK and search for it. To be fair, my last post was a LONG time ago. So there's that. Anyway...married...settling in. Everything is really going well.

As you were.Jim W.http://email@example.com:blogger.com,1999:blog-6873182308469051103.post-87616549668912258422019-02-28T13:43:00.002-05:002019-02-28T13:43:43.202-05:00Hello there.*picks up blog...turns it over reverently in my hands. Blows on it. A cloud of dust fans out, obscuring vision, choked breathing can be heard. I cough. Clear my throat. Begin.*

Hello there. It's me. Jim. Jim...Walter? You remember me, right? It's been a while. Six months is definitely the longest I've gone without posting. September 2018 was the last thing I wrote here. Let's catch up.

In blogging. Or...maybe in social media in general, when people disappear for a long time usually it's one of two things...Things are going great, or things are going terribly.

Things aren't going terribly. That's a spoiler. But not a big one.

Back in September I decided that instead of posting blogs, I'd start writing a book. Nanowrimo started in November, and I decided to join this year in earnest. Nanowrimo is a portmanteau for "National Novel Writing Month". https://nanowrimo.org/

Instead of posting things here serial/monthly style, I started posting daily to a cloud-based "pages" document. That allowed me to write wherever (not that I couldn't have done that here, but it felt like something I needed to do separately) without carting around flash drives or laptops or whatever.

Second spoiler...I didn't finish. The target of 1667 words per day (to get you to a respectable 50,000 word novel) was at first pretty easy, but started to weigh on me over the weekends. There wasn't a good "lunch time" period to bang out my words, so I would fall behind every weekend. And every weekend after that I would fall further behind, until I eventually just stopped trying to catch up in frustration.

I won't go into the specifics (it's dull) but a combination of goal-anxiety, lack of organization, and schedule fullness conspired against me. That said, it's still out there, and I still want to finish it, and I still can (and will). I made it about 20,000 words in before I petered out, well short of the goal, but also a decent distance in.

But that was just "a month" of the six it's been. Except that every time I felt like writing, I would think, "This should go in the BOOK, not the blog." And then I'd do neither until pretty soon six months had gone by and the blog kept calling to me and saying in a faraway voice..."duuuuuuude...you suuuuuuuuck...come write a blog pooooooost".

Things are either going great or they're going terribly. The other thing that was not going terribly was my relationship with the previously mentioned (previously in other blog posts, mind you), Angie. Things were going SO not terribly that I sat down with Emma to pick her brain on what her thoughts would be if I asked Angie to marry me.

They were, "Yeah, I kinda assumed you would. I like Angie." Okay...okay...that's sorted.

They were going SO not terribly that I visited the Clark building and my old friends at Frost and Company jewelers to order an engagement ring.

And, after briefly seeking (and receiving) her parents' blessing at a blizzard-interrupted "Meatball Sunday" (after lying to her that I forgot my phone on the counter in their house and rushing back inside to ask them in "privacy"), I set up a date to pop the question during our observation of Valentine's day a week later.

Valentine's Day itself was out of the question. She was in charge of a major fund raising event at her office the day after, and I didn't want to distract her. Instead, my sister Dawn, and I went to the fund raiser, and I bid on one of the fundraiser's auction prizes: a cocktail reception with service, bar, and stations for 25 people. I bid thinking, "Hey, if she says yes we have our reception already taken care of!", not pausing to consider that I might be called upon to explain WHY I thought a cocktail reception for 25 people was a good idea (Dawn and I brainstormed and I ended up telling her it was my Dad's 75th this year and she bought it. hahaha...sucker.)

The upside to all of this is that she was so busy she wasn't really able to think about any weirdness that I might have thought she'd consider.

"Left his PHONE?" You mean that thing he has surgically implanted in his pocket? Weeeeeeird."
"Bid a $1,250 on a cocktail party? For his dad's 75th? Pecuuuuuuuliar."

Those things that seemed so glaring to me at the time apparently never crossed her mind.

We dined at Morcilla, a great tapas restaurant in Lawrenceville. We had an amazing meal. I felt conspicuous about the amount of attention I paid to the heart-spangled gift bag where I'd secreted the ring box. In the Uber, in the restaurant...I REALLY saw myself leaving it behind like a to-go box so I was overly attentive to it. But again...she was oblivious.

I arranged (ultimately...there were several previous iterations that logistics or the weather (it was very cold) nixed) to have the Uber drop us off near the river. I told her we would walk along the river to Butcher and the Rye, where we had our first date. I asked her to show me where we had our first kiss and then, once we found it and kissed, I said, "Ready to go to bar?"

She said yes, and I rummaged in the bag, saying, "One more thing..." (Doubtless she'll edit me on my actual words, her memory is amazing, but it amounted to that if it wasn't EXACTLY that). I fumbled for the ring (visions of it tumbling into the river moving slowly to the forefront) before securing it, dropping to my knee, producing it with a flourish (opening the box toward her like a clam shell...I couldn't help but glance inside to make sure it was still there) and carefully saying, "Angie, will you marry me?"

She was genuinely dumbstruck, but did manage to say those four words that every man longs to hear...*checks notes*..."Are you fucking kidding?"

I was not, I assured her, fucking kidding. And then she was nodding and her eyes were pressed shut and her hands were covering her face and she was crying and I rose up to hold her, hugging her close and breathing into her hair, "Was...was that yes?"

"Yes," she laugh cried, and we stood like that for what seemed like a really really long time.

And then I said, "I...I really need you to take this ring, my fingers are freezing". And she took it. It was much too large. Dainty fingers I'd told the jeweler when I'd tried with him to guess her size. She would later return to find that the 6.5 he'd assumed was quite a bit larger than the 5.25 she would ultimately need.

When the crying slowed down I said, "Do you want to go to the bar and have a drink with your mom and dad and my mom and dad and my sister?"

And she said, "Oh nooooo..." and the crying started all over again and I was pretty sure they were happy tears but a part of me kept thinking, "Oh no? Oh no? Crap, what does that mean?"

They were happy tears.

We went to the bar and they bought us champagne and we drank and the parents (and my sister) bonded a bit and all in all it was a super successful engagement mostly because of the "yes".

And so...we circle back at last to my opening message. I haven't been around because things have been great. And because I've been busy. And because I was writing somewhere else for a bit (and will return to that as well). I'll try to make it back a bit more frequently.

But I know you've read that somewhere before...

I look smug. That...that's probably accurate.

 Jim W.http://email@example.com:blogger.com,1999:blog-6873182308469051103.post-66442139095790042262018-09-21T16:19:00.001-04:002018-09-21T16:19:56.089-04:00Fitful sleepI have a Fitbit now. That might not be news. I can't remember, and can't trouble myself to do a search. But I have a Fitbit, and I've been tracking steps and sleep for months now.

I do this thing where I charge my Fitbit every day. I used to charge it whenever it was low, but then I'd invariably charge it for hours until the battery was recharged, but while it was charging I'd feel like I couldn't move lest my steps not count. And I use it to chart my sleep too, so it's not like I could plug it in at night...how would I know if I slept or not??

Things were so much simpler before Fitbits, when you could "track" your sleep just by remembering when you went to bed and calculating based on when you get up how many hours that was. But my Fitbit tells me about deep sleep and rem sleep and wakeups and all sorts of stuff that I couldn't see before, so...I can't charge it at night.

So anyway...I hop in the shower, and I charge my Fitbit for the 15-20 minutes it takes me to get ready, and then right before I get Lily out of bed and take her downstairs to start our morning routine, I unplug it and strap it back on my wrist.

It never fully recharges. It's always perpetually about 3/4 charged. But...it also never goes dead. There's always enough to get by day to day. I was explaining this to someone when I realized I sleep the same way.

Lily wakes me up at least once a night, I go to bed late, I wake up early. But I have established this routine for so long that it seems normal to me. I'm never fully recharged, but I'm also never empty. I'm always running at about 3/4 charge.

I was looking back over the past three years that I had a Fitbit, and there's only one day in the past three years where my sleep was 7 hours or more. I've gotten close a few times, but for the most part I get about 5 1/2 hours per night...and as long as I get that little bit of charge, I seem to be functional. Like my Fitbit.

I don't know how many years of life this is draining from me, but for now...this is workable. This is fine.

Anyway, if you're not charging your fitbit while you shower, you're missing out on my sweet life hack. But try to get more sleep.Jim W.http://email@example.com:blogger.com,1999:blog-6873182308469051103.post-76083795218933808262018-08-28T11:16:00.000-04:002018-08-28T16:23:31.582-04:00GrooveFeeling a little...fragile(?) this morning. No real reason why, I suppose, except the things you might expect (I had to triple check that I didn't just write "except" twice. Anagrams are fun!) with an autistic 12 year-old starting "sixth grade". My need for literal truth in description requires me to put quotes around sixth grade. And that's part of the fragility.

Things have evened out with Lily over the past two years. What was perhaps a heightened emotional instability brought about by her blossoming womanhood has dampened from the wild sine wave peaks and valleys of rage/happiness to a more comfortable/tolerable gentle sloping pleasant cuteness punctuated much more rarely by a slap or screamed no when she's sleepy or hungry or feeling thwarted. The amplitude has decreased.

And that's good.

She's found a bit of a groove. She's content with her ipad. It has become her almost exclusive form of entertainment. She can spend eight hours on it. And while it's so great to have her able to mostly self-satisfy...it also means her interests have narrowed to an almost laser thin focus and loss of battery/wifi means a constant stream of encouragement/delay/diversion to keep her on an even keel. It has freed me up to go outside and do yardwork, checking on her frequently as she plays..."How you doin' Lily?" "Doin' good!" "Be right back!" Giggle. Repeat. But it has me constantly second-guessing myself...should I be working with her more, should I be redirecting her to other interests, should I ...

One man's groove is another man's rut, perhaps.

This morning Lily started "sixth grade" and I found myself prepared for but also overwhelmed by the change in routine. Lost were the rote preparations of last year, and I found myself playing catch-up as the bus idled outside in the cul-de-sac and I hastily pulled her shoes on over her socks, backing down the hallway as she followed me so that I could snap the traditional "first day of school" picture. I didn't even have a chance to see if it was a "good one" before hustling her out the door and onto the bus.

"Smile," I said to her as I backed up and brought up the iphone's camera app.
"Say cheeze, pweeze," she replied, smiling as she followed me to the door.
Click.
Grab backback
Open door, and hold hands down the driveway.
Talk to bus driver about drop off.
Wave goodbye.
Watch the bus driveway.
Breathe.

The morning went well, honestly. And I didn't start feeling fragile until after the hustle and bustle had abruptly ended. My house was quiet, with Emma sleeping peacefully upstairs (one more day of 'freedom' for her) and it was like the ironically deafening sound that wakes me from sleep when the power goes out and my ubiquitous white noise cuts off as the fan stops. I thought about the post. So strange to think about, but so common these days. Making time to post a picture of Lily on Facebook for her first day back. Like all the parents do. Only when I post it will be to say that Lily is starting "sixth grade".

And yeah...I don't need to label it with quotes. But I do it in my mind. Whether I put it down in writing or not, it's in my head. I'm thinking it. People with kids in traditional schooling...which is most people, I suppose, see that label and draw comparisons to their own kids and their own experiences and they just aren't the Sixth Grade that people...without proper explanation...can relate to.

Sometimes I don't notice how much she's grown...it's hard not to see from this pic. My big girl.

This is Lily's third year at Watson. Her goals are shifting. Abandoned are the "pre-writing" goals. Abandoned are the sight words and preparations for reading. Abandoned even are some self-help goals; the jacket flip, a goal for the past 7 years, is now something to be tried, but not measured against. And that's part of the fragility.

I never had a problem accepting Lily's adapted goals. Some might have lamented the limit-defining nature of those adaptations, but I never did, trusting that the people who crafted them saw in her the potential for success when viewed through their experienced eyes. So I feel a bit like a hypocrite now that they've relaxed their aims and I feel let down, my hopes deflated.

I feel like a hypocrite talking about how I accept Lily for who she is, as she is, when I feel upset or disappointed that she's not been able to crack reading or writing, that she struggles with potty training at 12, or that it is almost inconceivable to me that she will ever tie her own shoes, let alone don a jacket using the "flip method".

I feel like traitor to myself and to her. I know I still accept Lily as she is. I know I still love Lily as she is. But I fell into the same trap every parent of every child stumbles into at one time or another. I let my hopes/expectations cloud reality. The truth is I have no idea where Lily will end up. Maybe she will tie her shoes and read books at some point. And I am absolutely fine if she doesn't. I think.

I let her BSC go this past week. It wasn't as dramatic as that sounds. She was quitting anyway. But we were supposed to meet and I just didn't see the point. The BSC wanted to use her ipad as a reinforcer. And I started arguing it over and over in my mind. I started getting angry and bitter. She doesn't really have any other interests. She doesn't like dolls, or games. She doesn't like stuffed animals or playing dress up. She doesn't like opening presents or going trick-or-treating.

She likes her ipad. And the Wiggles. And McDonald's. That's it.

And holding the ipad as a reinforcer to do what? Learn to interact better with her friends? She doesn't like playing with friends. Learn to take turns? She doesn't like playing anything that would require turns. Teach her to converse with others? The vast majority of her speech is scripted and rote, memorized for politeness-sake. And while it feels a bit like giving up, unless I have someone specifically in my home to do "therapy" with her, who is going to work on those sorts of things with her? Me? I don't have the fucking time. Because I have to feed her and her sister. I have to keep my house clean. I need to stay healthy and get sleep. And honestly? I don't want the time she spends with me to be "therapy". So fuck the BSC. And fuck the TSS. And fuck "goals". She can play on her ipad, because honestly this is NOT going to be the year that the TSS would finally break the "flip method" goal by using the ipad as a reinforcer where the previous 7 years doing the same thing failed.

And that's part of the fragility.

God damn that sounds bitter and dark and angry and angsty and that is SOOOO not my life right now. Because although maybe that sounds like a rut, we've all been in a bit of a groove.

Emma quit her second job. She's going to be getting busy again with school starting. We had a great conversation (from my perspective) talking about "the right way to quit". It's one of those things everyone has to do, and I felt great being able to guide her about the way I think is the right way.

She made enough money that she feels she can buy a car, and she continues to get better at driving, my white knuckles less the result of erratic steering than my own uneasiness letting go of the reins. She'll take her test in three weeks. Once she has her license it will alleviate some of the stress of getting her to and from work, or to and from the mall, or to and from her friends' houses, and that will make us both happier.

Lily is happier and healthier. Her last seizure was over a year ago, and as I said, she's been a lot less angry lately. Back to herself a bit, though she still struggles to regain her disposition following a nap. But who among us doesn't?

I'm still seeing Angie. We probably spend three days a week together on average in some form or fashion. She makes dating easy. She is sooooo goddamn nice. Even Dobby likes her. I lost my last babysitter and I won't have a new one until September, so our time has been less about eating out and attending events and more about cooking together or enjoying a backyard fire (the patio and firepit are finished by the way!) which allows me to eschew the services of a babysitter which I like for lots of reasons (staying at home with kids, doesn't cost me money, not worried about issues while I should be out enjoying myself).

We made pasta together this past weekend with Emma. It felt so good. The day before we picked up food truck sandwiches and brought them back to the house for my parents. We played Telestrations together. My sister called from the airport and I told her to come over. She joined in. Emma got home from work and she joined it. The six of us played Telestrations and it was so fun. I didn't realize how much I missed that kind of stuff until we started doing it again. Not having to choose spending time with someone to the exclusion of someone else the way you're sort of forced to do when you first start dating, because you don't know how it's going to go. I'm pretty content at this point with "how it's going to go".

shhh...they don't know I'm taking pictures.

So, yeah, this morning I was feeling a little bit fragile. But despite the last minute haste it was a good morning with Lily. And despite the fragility, we've all been in a pretty good place. I can weather a little fragility now and again. I've got support.

Anonymoushttp://firstname.lastname@example.com:blogger.com,1999:blog-6873182308469051103.post-91009473484293945732018-07-13T16:17:00.001-04:002018-07-13T16:17:16.664-04:00JinxIt's not you, it's me. Two months since I posted last and lots to report.

I had to go back and reread the last three blogs to see what I'd even said. One was a walk notification. One was about teaching Emma to drive. And one was about the nurse quitting. And...that's really it. I've written other posts this year...but way back in January. And all pretty general stuff.

So...

In February, I visited the doctor for a checkup. His patients are primarily the octogenarian-set, so I think maybe him seeing me once every four months is a bit overkill. Still, he saw me and my blood pressure was..."high".

I've always flirted with high blood pressure. When I gain a few pounds it drifts up. When I lose a few pounds it drifts back to normal range. It's often been labeled "borderline high". My dad takes medication for it (for his blood pressure. Not mine. Don't be weird). It's not super surprising that I would have it too. But...it was "high". Not "borderline high". He prescribed me a blood pressure med and told me to come back in 4 weeks. I found this...jarring.

Nothing like being the sole surviving parent of two kids and confronting the possibility that your elevated blood pressure is increasing your risk of heart attack...

I decided I would make some "lifestyle changes". I told the doc to give me 4 weeks and if I hadn't brought my blood pressure down I'd start taking the medicine. The appointment books were full for six weeks, so it gave me an extra two week grace period.

I struggle with between-meal/before-bed snacking. If there are salty, crispy snacks available, I will eat them. I resolved to do better. I googled, "foods that are good for hypertension." I added these to my grocery list. I re-downloaded the MyfitnessPal app on my phone to track calories. I started getting on the treadmill regularly.

I had success. But...I didn't want to jinx it by making a big deal about it. I didn't want to publish the great news and then report again 2 months later that it was crap again. And, if we're being honest, there's probably only one other topic that people care less about than your "personal weight-loss journey" and that's your fantasy football team.

So I won't bog you down with all the deets, but from the end of February to the middle of April, I had lost 15 pounds. When he checked my blood pressure then he pronounced me "fit" and not needing the medication.

That was not the end of it. Since then I lost another 10 pounds, and 4 inches on my waist and the only clothes that fit are those that I purchased between about the beginning of June and now. It's a great problem to have. But it's expensive. Still...I'm not complaining. I left my yearly physical this morning with a clean bill of health. (and a scrip for a fucking colonoscopy and endoscopy...yay aging!)

I'm not done, but I'm in a much healthier place, and I waited until now to bring it up. It's consumed a lot of my time. Every night on the treadmill then lifting weights. Walking at work, walking at the mall on my lunch break (with the other elderlies...what? it's gets really hot outside!). I sort of made the decision to sacrifice sleep because something had to give. I can work out until 10:30 or 11, but then I end up in bed 11:30 or 12 and I have to get up at 5:30...and Lily still is waking up at least once per night. So...my fitbit (oh...yeah...bought one of those again too) goals are all green. Except my sleep goal. And yes, I know sleep is super important. I'll figure it out.
...

Emma and I continue to slog away at her driving. She's getting better. I'm getting better. We have an end goal in sight. Her test will be a week after she's eligible by law (in September). We're still trying to log hours. She drives back and forth to and from her jobs. Plural. Last time we 'spoke' she was applying for another job. She got it. She's saving for a car. Raking in the cash.
...

Lily got an aide. The short version is (and I'm not really going to go into the longer version) that I asked the pediatrician to remove the skilled nursing requirement from her letter of medical necessity in order to make the position easier to fill. It's been a year since we started this process. In that time, I think I've had 4 months of coverage. I spoke to the insurance company frequently. I don't know what the tipping point was...I'm sure there's a procedure or guideline somewhere, but according to the insurance company they..."offered a higher rate" for Lily and...whatya know? Someone took it. And I really like her. Fingers crossed she sticks around for a while.

"Offered a higher rate." I'm of two minds on this. 1) Thank you so much for offering the higher rate. I had no idea what I was going to do this summer. It was too much for my parents. It obviously fixed the staffing issue. 2) Why the fuck didn't you offer a higher rate six months ago??

I'm just letting it go. I'm going to assume that there's a procedure that says they're not authorized to offer higher rates unless X months of no service or something have gone by. It's better for my mental health to assume that's the case anyway.
...

I started seeing someone last year at the end of September. I'm pretty tight-lipped about that stuff on social media. At least I have been previously. I think it was part "don't jinx it" and part "keep your options open". Committing to someone is really weird and hard when there is still so much to unpack after losing your spouse. Kids to consider. The whole shootin' match. So I'd been dating. But I was really quiet about it in this space.

She's really great. A weird perfect match sort of great. Like in an almost spooky too-good-to-be-true sort of way. I'd always thought it was the differences between people that drew them together. I remember the priest telling Leslie and I that what I loved about Leslie were the things I saw in her that I wished I had myself. Apart from attraction, her organization, her mental compass, her stability. Those were all things that I was lacking myself and loved about her. And she made me better at all of those things to varying degrees. With Angie (her name is Angie, did I mention?) we are sooooo alike. So either she's an exceptionally gifted con-woman trying to bilk me out of my wealth (jokes on YOU, Angie, I don't HAVE any wealth! HAHA!) or we're just eerily similar people who get along so well that we have not had a single fight in the 10 months I've been dating her.

That's weird, right? And amazing? What's the record? 10 months and we haven't even gotten CLOSE to being in a fight.

We've covered all sorts of relationship milestones...met the parents, met my father-in-law (it wasn't as weird as you might think), went on a road trip to NYC, met my kids, met her sister, met her friends...and many many more.

Anyway, you should probably know that. It's "new". I mean, it's not really NEW new, but it might be new to you, in a, "Hey Jim, what's new?" "Oh, I've been seeing this girl Angie" sort of new way.

Surprise visit to NYC. Angie, Like Sasquatch, moves too fast to be photographed in focus

...

OH! Sidebar...I'm down 25 pounds and hardly ever drink so three drinks and I'm FUCKED UP. Related: so many calories in drinks. Can't someone DO something about that?
...

I'm redoing my bedroom. I put up brick paneling and then german schmeared it. No, that's not sex stuff. Look it up. I'm repainting and getting new bedding and had this big historic map of Pittsburgh made (thank you, Angie!) and it's getting framed, and and and. It's fun.

before

starting to schmear

paneling up

Also, I'm having my patio extended in the back and a firepit put in. Then I'm going to get new patio furniture.

I've been busy.

That's it for now. Things are going really well. I hope I didn't just jinx them.

Jim W.http://firstname.lastname@example.com:blogger.com,1999:blog-6873182308469051103.post-51931824735730083352018-05-25T12:23:00.002-04:002018-05-25T12:23:46.861-04:00Blink

Emma is driving. Supervised, but she's driving. The state of PA requires 65 hours of supervised driving over the course of no less than six months after she receives her permit to take her test. We've been whittling away at that in increments of one hour or so for the past couple months.

They're little bite-sized packets of tenuously-controlled terror, but if I'm being totally fair, it's my fault. She's doing fine. She's doing better than fine. She's doing great. But I'm still scared shitless at least once or twice per drive, and I THINK it comes down to MY inability to trust that she sees stuff and will react appropriately to it.

I suck at roller coasters. I suck at airplanes. Honestly, I suck at being a passenger in most people's cars. I involuntarily hit brakes. I white knuckle "oh shit" handles. I just suck at not being terrified at trusting other people to be in control of my safety. And I'm no expert driver, so it's not that I feel I'm sooooo much better at doing it than other people. I just...am in control.

So for a couple hours every week, I give up control of the car and we barrel (carefully drive) over the road at break neck speed (typically at or below the speed limit) running errands or just getting into the practice of driving.

Have I lost my temper? Yes.

But we're developing a system. Reading through the driver's manual to get ideas how what/how to teach Emma how to drive (it's actually a "how to teach your teen to drive" manual) I found a gem about having her verbalize all the things she's doing in the car. Apart from being a chicken about loss of control in general, I think particularly hard for me is just not knowing that she sees the things I see. I am at war with myself...do I constantly teach (nag) her throughout her drive? Do I give her credit and assume she's got it under control?

I think the answer is somewhere in the middle. I harken back to a huge fight my girlfriend and I got in just after high school. We were visiting her family in Denver. She was driving. I kept giving her directions. In my head I think I thought it was my job in the passenger seat to be navigator. She lectured me heatedly about it. We fought and the car was silent. I saw our turn coming up. She was in the wrong lane. I'd JUST gotten my ass handed to me for telling her to switch lanes. JUST. I didn't say anything until after the turnoff passed.

"You just missed the turnoff," I said, helpfully. Fight two was about recognizing the difference between nagging her about what to do behind the wheel and not helping her navigate to her family's house. I my argument was that she'd just yelled at me for a half hour about not telling her how to drive so I was letting her show me how well she did it. Passive aggressive...probably. Yes. Fine. Definitely. But really you had to be there. I would NOT have won in that situation. If I'd have told her the exit was coming up...but we can never know, can we? Maybe she'd have been, "awww, thanks, Jim, I didn't see that!" Plus I was like 19. *side eye* whatever.

ANYWAY...I won't NOT tell her about something that could potentially get us in an accident or going the wrong way like I did with my girlfriend all those years ago. So we get into little spats, and honestly? Honestly she's been handling THOSE really well too.

I got sidetracked. The manual said to have Emma verbalize her observations and proposed actions: "I see a yellow light up ahead, I'm going to slow down and stop at the red light", "I see the car stopped in the middle of the road with his turn signals on. I'm slowing down in case he can't turn." That kind of thing.

That stuff? REALLY helps. She doesn't brake the same way I do. I want to hit the brakes now...and she's waiting...but if she at least tells me she sees the obstruction, and WILL hit the brakes, it lets me feel less like I'm waiting to die.

We're still not totally consistent at this approach, but it helps. The other thing that I THINK helps her (I'll chat with her about it before our next drive, because I was just thinking about it a few days ago) but also helps me is providing her with the same narration in question form. "There's a light up ahead, do you see it? The car in front of you is signaling, so he's probably going to slow down to turn, are you ready to hit your brakes?" That extra bit of communication is better than the...slow down, SLOW DOWN SLOWDOWN STOPSTOPSTOPSTOP that I'd PREVIOUSLY been using.

It's scary, but it's not scary because she's doing a bad job. It's scary because she's driving a car for the first time and accidents happen...even to me...and it makes me nervous.

She applied for a second job. She's decided she wants to save for a car which I honestly think is amazing. So she applied for a second job and she has her second interview tonight. She's got hustle. I mean...everywhere but at home. (I sat on this post for a day because I was going to add pictures and then I forgot, and in the mean time she got the second job. Woohoo!)

I parked a trash can, HER trash can in front of the door to her room after taking out her garbage last Thursday. By Saturday I was posting snapchat stories with "Day 3" to 'help her remember', but by Day 4 I finally got fed up and asked her to put it in her room.

Clothes on the floor, in some cases inches from the empty laundry basket. Bed unmade unless I specifically tell her to go back upstairs and make it before school. It feels like it's a constant battle against entropy. And entropy always wins. Never bet against entropy.

She's learning the discipline of completing her homework though. That's almost entirely on autopilot. She still slips into bad habits at the end of the quarter or school year, but her grades are better, and I rarely have to tell her to get school work completed.

And she's nervous. All this shit is coming at her fast now. She's at the end of her sophomore year and they're starting to pressure the kids to decide what they want to do for the rest of their lives. Next year we'll start looking at colleges...maybe applying...touring. It's a lot. And it's scary.

And it's bittersweet. At least for me. I may never be a true empty nester. Lily will almost certainly continue to live with me throughout adulthood. But Emma is THIS CLOSE *holds thumb and finger imperceptibly close together* to being off on her own.

Driving, college, graduation, they're all just an eye blink away. Just like everyone said 16 years ago when she was born.

Jim W.http://firstname.lastname@example.com:blogger.com,1999:blog-6873182308469051103.post-55745140152907558052018-04-02T11:18:00.000-04:002018-04-02T11:18:29.543-04:00We'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!

Jim W.http://firstname.lastname@example.com:blogger.com,1999:blog-6873182308469051103.post-41491280209762717702018-02-13T13:00:00.000-05:002018-02-13T13:02:21.167-05:00Another One Bites the DustLily's nurse quit. She gave her...10 minute notice yesterday I'm supposed to hear back from the agency sometime today, but haven't yet. Not sure what they're waiting for, but my dad is getting Lily off the bus today, so at least we're covered.

So the saga of getting/keeping an aide continues.

At issue is Lily's aggression. Here's where being me (someone who attempts to see both sides of the situation all the time) sucks. Because I get why she quit. She doesn't want to get hit or kicked or bitten anymore. All that is a slam dunk. I didn't want that either. I am NOT a huge fan of coming home to what amount to "I quit as of this moment", but it's definitely hard to deal with aggression. So because I understand the "why" of it, it makes it hard for me to call her the "bad guy" in this situation. And yeah...probably I'm putting too many things in quotations in this paragraph.

The devil's advocate side of me, however, is wondering why this nurse struggled so much with Lily. Even when Lily IS aggressive with me...she only ever actually hurts me when I'm stupid enough to play chicken with her, holding my hand or arm or fingers too close to her mouth when she's really really pissed off (bite!). But the slapping thing? Scratching? Kicking? She's 12, low muscle tone, significantly uncoordinated (I mean, I still help her down the steps), how hard is it to dodge a slap? Or to catch a foot and hold it when she tries to kick? That's a trick question...I already know the answer is...not very fucking hard. Because I do it regularly.

Whatever this nurse's approach was...it antagonized the shit out of Lily, because nobody has EVER struggled with her like that. Each day I'd come home and listen to the nurse...basically tattle on Lily. It was stressful as fuck. I couldn't wait until she was out the door every day and my family could just chill out again and relax. Because honestly the minute I walked through the door, everything was fine and normal. Manageable.

Sigh. Back to square one. We'll see what the agency offers.

SUBJECT CHANGE!!

I remember when I first moved to Pittsburgh and asked people directions to things. Apart from the fact that Pittsburgh's winding roads are gridless and confusing, people would tell me how many minutes it was from point A to point B. I can't remember who I asked, maybe it was Leslie, but I remember asking, yeah, okay, 15 minutes, but how many miles is it?

And she (or whoever it was) had no idea. I couldn't believe it. Nobody knew how far anything was from anything else. It was X minutes. It was hard for me to get my brain around. In Montana everything is X miles. YOU decide the minutes based on how fast you drive. It's 40 miles from Big Timber to Columbus. 40 minutes for some. 30 for others...

I literally just realized this a couple nights ago, but nobody knows how many miles it is, because there aren't what would have to be hundreds of thousands of signs with miles posted on them. Sure it's like that on the highway, but in the metropolitan sprawl of Pittsburgh and it's surrounding communities...you just can't post as many signs as it would take.

How did I not put that together? Back then I just thought if someone was going from Shaler to Dormont, for example, there'd be a sign that said Dormont 10 miles. But...there isn't because there's no Shaler to Dormont expressway. It's just a bunch of different neighborhood roads and a few miles of parkway. (They should really fix that)

Anyway...I realized it on my way home, looking at the GPS, which tells me both how many miles and how many minutes. And I remember thinking...who the fuck cares how many miles it is? I need to know how long it'll take. And right then I thought...oh my god...country mouse was visiting the city...it's just a very different frame of reference. 10 miles might take 30 minutes. Or 45 with traffic.

In Montana it's just a simple equation. Distance/velocity = time. That equation doesn't work in the city.Jim W.http://firstname.lastname@example.com:blogger.com,1999:blog-6873182308469051103.post-19160049599046839812018-01-24T13:01:00.001-05:002018-01-24T13:36:17.603-05:00On WritingI have a LinkedIn page. If you're on Linkedin, you already know this, but if not, it's supposed to be a networking tool. Social media for professional use. On it, I have myself listed not as a project manager with a degree in Chemical Engineering, but as a writer. *shrugs*

I figured I could use it as sort of a starting point for freelance work. I do that from time to time (Healthline, Childswork, etc) so I figured I'd create a writer's professional page. But...

I don't think of myself as a writer. Maybe a blogger. But not a writer. Writers write novels! I blog, sure, but...I've always wanted to be a writer.

I was on twitter the other day and saw a link to a podcast about a writer talking about the writing process. I started listening and found it really entertaining, but the reason I'm bringing it up is not because I think you should listen to it (although go ahead and listen...it's called "Launch") but because the headline eye-grabber said something like 3/5 people want to write a book, but most don't make it past the first chapter. This...seemed rightish.

And I guess I am firmly in the 3/5 camp, but...am I also "most"? I hope not. (also...hope I am not moist, if you misread that too, I am not moist)

I decided to write this post this morning. It's been sort of in the back of my mind for years. What makes a writer? I've read so many quotes from writers about what makes them write, or what it takes to be a writer, and like anything the opinions vary widely. So I guess I'm writing this not so much to explain (as someone who doesn't consider himself a writer) what a writer is, but to help myself understand whether I can/should be one of the "not most" who makes it past the first chapter. (If you keep reading most as moist because of the sentence in the previous paragraph then you're not alone. I sorta wish I'd never typed that part.)

So the first questions I asked myself are the absolute easiest ones:

1) Do I possess the ability to write
2) Do I possess the desire to write
3) Do I have a story to tell

And I think writing stems from that. Maybe there's more to it. But I think you can break it down to those things.

The Ability to Write:

I'm not talking about being literate. I mean, I sort of am, but I'm sort of not. Can I write? Can I put together sentences in an interesting way that readers might enjoy?

There's a whole rabbit hole there... "readers might enjoy" that I'll discuss a little bit in the second heading, but I think I have the ability to write. I've written this blog for years. I get great feedback on my writing. I feel like I have a definitive voice that is recognizable and genuine. In short: I think I have the ability to write.

I'm aware I have a SHIT ton of bad habits, not the least of which is using phrases like shit ton, or capitalizing entire words for emphasis, or using the hell out of ellipsis. But I guess my hope is that if I were able to put together a decent enough manuscript, written and rewritten until it makes sense, an editor could help me do away with the excessive/unnecessary punctuation, and help me make a good thing better.

The Desire to Write:

Here's that rabbit hole I was talking about. I don't know what motivates a 'good writer' or just a writer in general. I don't know that it should be "what readers might enjoy" as I said above. I do think that to consider the idea you may want to write and get paid, you have to consider whether or not readers will enjoy it.

I can certainly understand the idea that you might be motivated strictly by the story, or the process of writing, or self discovery, or whatever; that things like "what OTHERS think" should be an afterthought and that you should be writing because it's what YOU want to do. And yeah...I think all of that makes sense. If there's a story you need to tell...then tell it. And don't worry about whether readers will like it because it's about something YOU need. But my point here is...I think motivation to write can come from all over the place. Lots of angles. Lots of sources.

I was listening to "Ender's Game" by Orson Scott Card. At the end of the audiobook he has a monologue where he discusses how the book came to be. He references another author's quote that I tried really really hard to find before I wrote this post. But I couldn't. The gist of the quote was that authors decide to publish books for two reasons (I don't necessarily agree with this entirely, but I totally get the idea): 1 - because they've read a book by someone and they think, If he/she can do it, I can certainly do it. Basically, the book is not great and you think...jesus, *I* should be writing. Or 2 - because they've read a book by someone and you're inspired to write just by reading them.

I can cop to both of those feelings, and while I think there's at least one more...3 - because there's a story they need to tell. That one doesn't stem so much from a third party's work, but from within.

I have all of this. The beauty of me breaking this into very basic items is that if it turns out in 10 years that Jim Walter never wrote a book, I can STILL be right about the premises stated by throwing myself on the argument that in hindsight I guess I did not possess a TRUE desire to write, or perhaps I didn't ACTUALLY have the ability. Or maybe there really WASN'T a story I needed to tell.

And if we're being honest, I'm not positive you NEED to have a story to tell as long as you can come up with one in your process.

A Story to Tell

 For years this blog has been my "story to tell". The story of my family has been one that I've loved. Even the bad stuff has been cathartic to write about. Is that the story I'd want to tell in a book?

I always fantasized about being an author who wrote the sorts of things I read. I read mostly fantasy/sci-fi as a kid, and it's still a pretty heavy percentage of my literary diet. I wrote a couple things on a lark. Fictiony things. I'm not good at it. I think it's one of those things that gets better the more you do it, but I reread the fiction that I write and think...this isn't me. It's hard for me to find my voice when I'm writing fiction. Maybe my voice doesn't lend itself to fiction. I have bandied about the idea that if I wrote fiction, I would write it in first person, because my voice DOES lend itself to a more laid back, casual, profane sort of first person narrative.

I think I have stories to tell. I feel like the blog itself is proof that I have stories to tell, and I just have to know whether those are the sorts of stories I want to write something larger about...or if I REALLY want to make them up.

So...am I most? Until I write a book, I guess I am. I'm 3/5 people who want to write a book but can't make it past the first chapter. Until I'm not.

Getting Down to Business

If I fill in all the checkmarks above, what's stopping me from making it past that first chapter? I'm just thinking "out loud" at this point. I've written a rough outline. I've started what I want to write. I was excited because I had a few pages under my belt before I quit for the evening. And...that was a week ago.

There are a lot of really good reasons why I haven't returned to what I've written. Some of them are valid. Some...not as valid.

I'm busy. If you've read this blog, you know I'm busy. You know why I'm busy. You know that it's not the sort of busy you can excuse yourself from. This is family. This is single parenting. This is life. I have a full time job. It pays the bills. Writing will only ever be something I wished I had more time to do until I am no longer working full time. Quitting my job to be a writer isn't where I am right now in life.

Sometimes at night I choose "sleep" over writing because I've gotten so little of it, and honestly, how can you write if you're falling asleep as you type anyway?

But apart from the need to sleep and work and parent...and stay fit etc etc...there's the procrastination.

The irony of avoiding writing a book by writing a post about why I want to write a book is not lost on me, I assure you. It is the ultimate irony. I'm a procrastinator. Deadlines are the carrot on the stick that moves my donkey cart. And there's always tomorrow. I'll start tomorrow.

I can't remember what author said this either, but I read an author that said "write every day". A lot of authors have said that, but this one specifically said...just write your book. Don't character develop. Don't world build. Don't draw maps. Don't look for an agent. Don't brainstorm cover art. Just write.

I consider looking for an agent. This is me procrastinating writing. What would I pitch to the agent? I haven't written anything yet? I consider writing a blog post about writing a book. Why not just write in the book? I need a new carrot.

Self discipline is the problem. THAT is what is holding me back. Me. If I am to prove to myself that I truly have the "desire to write" then I have to get busy and just do it. Maybe a little procrastination long enough to set goals and rewards for myself. But then just get down to business.

I have a goal in mind. I will write a book. This book does not need to "appeal to the masses". This goal book is just to prove to myself that I have it in me to complete a book. The end goal at some point may be to get a book published. But right now the goal I'm looking at is "write a book". A good book, Jim? A book. A publishable book? Just a book. A long book? I fucking said just a book, okay??

Anyway, that's where my head is.
Short term goal: I will write every day (when I'm able)
Long term goal: I will write a book
Longer term goal: I will publish a book (self publish even)
Longer Longer term (this is how writers talk I'll bet) goal: Get a book published
Longest Bestest term Goaliest Goal: Make millions writing books

Jim W.http://email@example.com:blogger.com,1999:blog-6873182308469051103.post-46274803256501635482018-01-22T09:54:00.003-05:002018-01-22T09:54:24.898-05:00The Big List Of 50 Cheerful ThingsI can't honestly say what prompted me to remember this. I often forget it for long stretches of time. Maybe it was that I was feeling down, or maybe I saw something that cheered me up and was on the list, but a long time ago (longer than three years ago (more on that in a minute)) I created a list of "cheerful things". They weren't necessarily things that, by themselves, made me happy, they were just cheerful. And sometimes cheerful things CAN jar you out of a blue mood, or at least nudge you in the right direction. So I posted it on Facebook in notes or someplace that I was never really able to consistently find, and then a few years later Facebook added a feature that allowed you to "save" things, so I did that and was able to finally find the list when I wished...or remembered. Like now.

I say "longer than three years ago" because that's when Facebook says I posted, it, but I'm almost positive it was more like five years ago, and I copied and pasted the list into a post of some kind, and THAT is what Facebook is saying is three years old, not the list itself. You can comment on it here: The Big List of Cheerful Things

People commented on it, and I updated it with the ones I agreed with, encouraging people to write their own lists since I didn't agree with them all.

For your perusal, comment, edification, I have pasted it below, complete with new items.

 Happy toast (cinnamon and sugar on buttered toast)

 Honey bears

 Balloons

 Daisies

 Bubbles (like with wand in the bottle)

 Sunshine

 Rainbows

 Cotton candy

 Baby animals

 Limericks

 Children's laughter

 Purring of cats

 Being licked by dogs

 Swimming

 Berries

 Dancing

 Sunflowers

 Getting mail

 Listening to the rain

 Twizzlers

 Eating sunflower seeds

 Making a snowman

 Cookies

 Eating watermelon

 Photo bombing

 Dog's wagging tail (especially when it thumps accidentally against things)

 Baby toes

 Maple tree helicopter seed pods

 The first crocus blooms

 The creaking sound of a new book opening for the first time

 The smell of old books

 The deep bass thumping sound of closing a large book (yeah...I guess I really like books)

 The smell of freshly brewed coffee

 A campfire

 Roasted marshmallows

 The tug of a fish on the line

 Finding money in your pocket

 The jingle of coins/change

 Skipping

 Running downhill

 Seeing home after a long vacation

 Popping bubble wrap

 Amusement Parks

 The sound of surf

 The sizzle of bacon in the pan

 Getting the first scoop from a jar of peanut butter/tub of butter/container of ice cream

 Unexpected compliments

 The feeling of soft soft fur

 Popcorn

 Watching animals goof off (pandas, dogs, otters, baby sloths...doesn't seem to matter)

This is not a complete list, so if you see any glaring exclusions, please share. Jim W.http://email@example.com:blogger.com,1999:blog-6873182308469051103.post-48120420814095026792018-01-16T13:10:00.002-05:002018-01-16T17:23:10.054-05:00BrittleIs 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.

FINJim W.http://email@example.com:blogger.com,1999:blog-6873182308469051103.post-13727519019914600812017-12-20T10:48:00.000-05:002017-12-23T09:20:23.706-05:00Sink 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.

Jim W.http://email@example.com:blogger.com,1999:blog-6873182308469051103.post-65592216577669837442017-12-04T13:01:00.001-05:002017-12-04T13:01:17.043-05:00The Fabulous Stains

"Ladies and Gentlemen, The Fabulous Stains", was a movie that came out in 1981. It was about punk rock and about feminism, and a super young Diane Lane played the lead. I'd never hear of it, but maybe 1985 or '86, they showed it on USA network's Night Flight. I never really understood Night Flight, but it was trippy late night TV mostly centered around music, but I'd often watch the obscure movies they'd show. In the case of the Fabulous Stains, I'm pretty sure I just wanted to see if they'd show Diane Lane naked. They didn't.

None of this has anything to do with the post today...except the title.

This morning I was looking out the kitchen window at my crappy patio table. It was covered in mildew/moss stains from constant exposure to wet weather, and I had an epiphany. "I'll bet Tilex would clean that right up!" So after the kids were off to school, I got the Tilex from my bathroom and sprayed half of the table down. I gave it a few minutes to work, and then, sure enough, the stains cleaned up almost without effort. I was so excited I went back in the house, retrieved the Tilex and sprayed down the rest of the table. It was good as new.

I beamed. At one point I brushed against the table and I remember thinking..."I gotta be careful" because I was wearing a good pair of pants and Tilex would bleach the shit out of them. I also remember after thinking that I should be careful that "I probably shouldn't wear pants like this when cleaning with bleach."

Anyway...magical. The stains came right off. I took the Tilex back upstairs and was brushing my teeth. In the mirror I could see my closed bathroom door. It had a dark smudge on it very similar to the outside patio table and I thought..."I'll bet Tilex would clean that right up!"

The stain on the back of that door has been there...sort of present but somehow beneath my notice...for years. It came right off.

So THEN i thought...I ought to just clean this whole fucking door! I was so excited. Mad with cleaning power. And as I wiped the sponge down the door panel, a large foaming splotch of Tilex dripped on my pants and IMMEDIATELY stained the navy blue pants pink where it landed. Did I mention expensive?

I was still sort of happy about the stain cleaning, but in the end I just sort of transferred stains from the patio table and door to my pants. And now I have to get new pants. I changed out of my navy pants and put on a lighter blue/grey pair I had before leaving for work.

I just spilled oil on them.

So anyway. Stains. Fabulous.Jim W.http://firstname.lastname@example.com:blogger.com,1999:blog-6873182308469051103.post-31501446869958355132017-11-28T12:56:00.001-05:002017-11-28T23:08:22.837-05:00In a Nutshell
"So little to do; so much time. Strike that. Reverse it." - Willy Wonka
 Well we made it. If you're reading this, we have not been obliterated in a nuclear war over some dipshit's twitter account. Or, I suppose if we have, then Blogger's servers are robust as hell and your post-apocalyptic priorities are seriously out of whack.

We're in the home stretch of 2017 and it's been a doozy. This is not, however, an end of the year wrap up. Mostly just checking in.

I'm older and fatter than I was last year. I KNOW WHAT I SAID! And it's still not an end of the year wrap up. Just...sayin'. I'm going to attempt to jump back on that old wagon. The diet and exercise wagon, I mean...not the fat wagon. Although, if we're being honest, the fat wagon sounds pretty kickass and would also be an awesome band name. "Fat Wagon". I digress. My metabolism has finally caught up with me and I'm going to take my own advice and not wait until the very end of the year as my "starting point" to resolve to get more fit. Now is as good a time as any.

Lily is still sleeping weirdly, but I actually think that's gotten a smidge better the last few weeks. She's been falling back asleep quicker after waking at 3:30 or 4. That's good stuff...if it lasts.

My home computer was on the fritz, so I had to take it to Best Buy. They couldn't do anything with it and sent it to some data retrieval company. They told me it would be anywhere from $250 - 5000 and I was REALLY hoping it wouldn't be $5,000 because... I had a bunch of pictures on there of Leslie and the kids that were duplicated nowhere else. And I was thinking...I might actually have to pay $5,000 if that's what it takes to get those back. Even though I don't really look at them, it's nice to know they're there for me and for the girls. The charge was $450. I was "happy" with that, honestly.

Now I'm thinking about getting my first Mac. I've been a PC man all my life, so this change is big. But it's probably time. I've been using the lack of a decent computer as my justification for not starting my great american novel. So I'll remove that hurdle and see what hops in front of it.

This time of year is stressful for lots of reasons, but mostly for me it's just how much shit you have to jam into the remaining time. Lily's birthday is in a week and a half so that just gets added to the top of everything else. And buying for her has never been easy.

If there's a saving grace to being slammed schedule-wise it's that it's easier to overlook missing people in our lives. Obviously I miss her presence, but apart from that sort of...ambient grief, Leslie was a huge part of making the holidays go smoothly for the girls and me, and I'm constantly worried about how the holidays are affecting the girls in that regard.

The weirdest thing for me is how smoothly and effortlessly I can navigate my day without giving it a thought. Like at times it feels so easy. But also, if I stop at any point in time, I only have to focus on the loss for a minute. Not just thinking...Leslie's gone...more like examining our lives without her. And the tears are flowing. How can both of those things be at the same time.

It's like a scab that never fully heals. Sometimes it itches a little and you think...I'll just scratch the edge and it'll flake right off, but instead it rips away and starts to bleed. Meh...I'm looking for the right analogy. That's not it. Because I want to scratch that itch from time to time. And I think it's a healing process, not something that makes it worse. I'll come up with it.

I still have no home health nurse for Lily. It's been since September. I started out guns blazing. I called every week for an update. A few folks sounded positive. But then one by one they either bowed out or said, "we'll start recruiting for the position" and I never heard back. Now I call every few weeks, the list of agencies who haven't outright rejected her case slowly dwindling. I have to keep calling, at some point my parents are going to burn out. But they've been handling it since then.
I have to call the neurologist about Lily's epilepsy. They were supposed to attempt to push through the blood test on my insurance and then notify me, but I haven't heard for months. This is to determine what medicine she can use as a maintenance drug for seizure control. It seems...importantish...since they tossed out the term SUDEP during our appointment. And yet...here we are.

I tried making an appointment with a therapist to chat about 'things', but my first choice was a bust schedule-wise, and my doctor gave me a second name on a sheet of paper that I promptly lost. It turned up a week or so ago and then I lost the damn thing again. And there's no magic to this particular person. My doc actually was like, "Oh! I had a really great therapist to recommend to you but he died, so here's the name of someone who makes rounds here at the hospital instead." Not much of a recommendation, but at least it's a name. And the fact that I know that name is floating around somewhere at home is actually stopping me from just finding someone and calling them. At the same time, I never remember to look for it when I'm there. Meh. I'll get there.

Lily had a great Halloween...visited every house in the cul-de-sac...HAPPILY. She dressed as Anna from Frozen (second year in a row, but the costume had to be biggie sized). I didn't dress up...

my attempt at pennywise

stranger things...

Emma finished "Sleepy Hollow" and next week are auditions for the musical. "Anything Goes" We'll see how auditions go. I really hope she gets a part she'll enjoy. So many talented students at her school, but I think she's one of them, and I'd like her to at least get a taste of the 'limelight' in high school. This year has been SOOOOoooooo much better for her gradewise. I don't know if it's just understanding the expectations of high school better? More mature? Whatever it is...keep it comin' baby!

Emma and I drove to DC for a "road trip". We stayed at the W and their rooftop bar overlooks the White House. That sounds more impressive than it was. You could see it. But it wasn't like you could launch water balloons at it.

We went to this cool exhibit of "nutshells". This woman basically recreated crime scenes in dollhouse form to help the FBI train crime scene investigators wayyyyy backintheday. It was neat, if somewhat morbid.

We piggybacked that with a trip to the Holocaust Museum. That is a well done museum. Probably could have spent a lot more time there, but we needed to check out and head back. All part of my..."dedicate some time to Emma" campaign. I need to ramp that up a bit.

Bought a new car. Finally did what I said I was going to do early this year. Sold my Altima and then traded the minivan in to attempt to buy one car that: I could commute in (gas mileage), drive in the snow, drive to the beach. Got a Subaru Forester. It's super nice. I already love it.

Alright...anyway...busy month. More later, but I already blew off buying candy for the kids' advent calendar to write this post, so time's a'wastin'.

Merry ChristmaKwanzakka

Jim W.http://email@example.com:blogger.com,1999:blog-6873182308469051103.post-68688622696194379492017-10-17T11:44:00.003-04:002017-10-18T14:23:44.913-04:00All the Ribbons of the Rainbow

hat hair is not currently in the DSM

I can't remember what I've written and what I've left unwritten. I'll write this chapter style because there is a lot to unpack, and it's all related and also completely separate...So let's hop in the wayback machine and adjust our dial to late winter of 2016...

Chapter 1: A Lil Help Please

Because of the severity of Lily's disability, she qualified for a case manager through her ID (intellectual disability). That person put me in touch with an agency. That agency suggested I solicit my doctor's office for a "letter of medical necessity". That letter, forwarded to Lily's Medical Assistance insurance got her approved for a home health aide. Basically they would pay for an aide to stay with Lily 4 hours per day on school days that I worked, and 10 hours per day on non-school days that I worked (ie. the summer).

Amazing benefit, right? Except that the problem isn't even getting approved for the benefit. The problem is finding someone to actually provide the care authorized BY the benefit. Nobody had anyone to offer. Six agencies told me they would recruit for the position. Meanwhile my parents and in-laws continued to commute to my house for daily bus duty. I speculated that maybe because there were limited hours...or the pay offered through insurance wasn't enough, or the hours were weird. I wasn't sure, but wasn't getting a lot of interest.

After two or three months, I finally had a string of interviews (they call them "meet and greets"). The first one didn't show up to the meeting. No thank you. The second one didn't show up to the meeting. No thank you. The third one showed up to the meeting and seemed quiet, but was fine. A fourth meeting was scheduled but canceled before the meeting.

Four interviews. Three no-shows. The person who "showed up" was hired. It made me extremely uncomfortable. But...she was the solution.

Okay, let's put a pin in the aide situation.

Chapter 2: Hidden Results

Around the same time as I was getting Lily's ID "label", I had reached out to Lily's developmental pediatrician to ask him about Rett Syndrome and Lily. We had gone back and forth a few times about it in the past. He asked me if we'd ever done the testing. I told him I thought we had, but that the results had been negative. Over the course of time, I had looked through all of Lily's genetic testing information and eventually came up empty despite feeling CERTAIN that we'd done the testing.

I reached out to him again and asked if he had access to any other genetic test results that I didn't, because I couldn't find any record of it being done. In March or maybe a little later this year he finally got back to me via phone to tell me that he found it. And it was positive.

And of course I was like...what. the. actual. fuck. dude.

It turned out that yes, he'd ordered a genetic test for Rett for Lily back in 2013 or 2014 and that the results HAD come back around the same time. And that they had been positive for the genetic marker for Rett. So...what happened? Why did I always think that she absolutely had been tested and absolutely didn't have it?

It turns out that the genetics lab had sent a cover letter to the doc indicating the preliminary findings, with promises of a report to follow. The doctor filed the cover sheet and waited for the report...which never arrived. He forgot the cover. Forgot he was waiting for the report. And everyone moved on.

But Lily continued to show some pretty stereotypical Rett's traits...hand wringing, pressured breathing, etc. And, forgotten results notwithstanding, the doctor treated Lily as if she DID have Rett, or at least "prescribed" supplements that were supported by science for the treatment of patients with Rett Syndrome.

So we found the cover sheet. Genetics lost the report. It's gone. But Lily has Atypical Rett Syndrome. Atypical in all the best ways...she CAN walk. She does NOT need a feeding tube. Those sorts of atypical things. But with the new Rett diagnosis came a referral to meet with a geneticist. I started looking into setting up an appointment.

Chapter 3: Seize the Day

In April Lily's school reported her first seizure activity. Absence seizures. She was unresponsive for a minute or two, rocking rhythmically and drooling. Then she would snap out of it and be okay again a few minutes later. They loaded her in an ambulance and I met her at Children's Hospital ER.

A long day in an emergency room followed.

Fun fact: Children's hospital does not have large pullups for children. So, if you are meeting your child at the ER and somehow did NOT pack pullups in your car for work, they have no way to control potty situations. Might as well duct tape a fucking roll of paper towels to your daughter, sir...we at "Children's" hospital ER are not equipped to handle your special needs. Dicks.

They wouldn't let her eat. Or drink. Had tests to run. It wasn't fun. Ultimately left the ER without any sort of confirmation of the seizure itself, but other tests that came back "normal".

We also left with a recommendation for a new sleep-deprived EEG to be conducted, and a sedated MRI, along with a followup with a neurologist. Lily's developmental pediatrician seconded the recommendation. I began to look into setting up those appointments.

From April to August she would have another two or three seizures, and I finally witnessed one myself. I didn't love it.

Looking back, people have been reporting seizure-like activity all the way back potentially to her being three or four. It was always maybe once or twice a year someone would say she would just sort of stare and rock and drool and be unresponsive, but we'd never actually witnessed it, nor had a nurse (like the school did in April) witness it. So, although we DID do a sleep-deprived EEG years ago (2011 to be precise) the results then were inconclusive. The saw no seizure activity. And the followup recommendation they made was met with a polite but clear "fuck you." At least in my head.

Chapter 4: Appointments

I don't remember what was first, and I'm too irritated right now to look it up for accuracy's sake. Lily did a sleep-deprived EEG. She did a sedated MRI. She met with a neurologist and a geneticist.

The results of the EEG were...inconclusive. According to Lily's developmental pediatrician...they showed "normal background slowing consistent with someone with Lily's diagnoses". Only this and nothing more.

The results of the MRI showed a Chiari type 1 malformation that was not shown on a previous MRI Lily had when she was like 2. That generated a recommendation that she see a neurosurgeon. I scheduled that appointment. We visited.

I will wrap your head around all this awesome appointmenty goodness momentarily.

I met with the Geneticist. Did you know that 90% of people with Rett Syndrome have seizures? No? I didn't either. 90. Percent. So yeah...she seconded the idea that Lily meet with the neurologist, who I was already scheduled to meet with, but it was wayyyyy out in the future because apparently it's all the rage to have a neurological condition. I asked about followup. She said, "I'd love to continue to follow Lily, most of my Rett kiddos end up being followed by neuro though." k. She recommended a bone density scan, and some other stuff. I haven't looked into scheduling that yet. At this point the number of appointments that branch from each previous appointment requires a fucking diagram. hmmm. Maybe I'll do that.

I met with the neurosurgeon. Chiari Malformation isn't really a thing in kids. I mean it is and isn't. They did this study in the 50's. All these people who died. They found this statistical incidence of some measurement ratio in the brain. Like...these people all shared this ratio in their brain stem and it was when measurement X exceeds such and such a percent of measurement Y...we shall call this ratio a Chiari Malformation.

But it was a study done on adults. And there is no data on children. Soooooo...when MRI technicians see this magic ratio, they spike it out and a neuro-surgeon magically appears to follow your child through the rest of her days like you said "Bloody Mary" three times in a mirror. Symptoms to watch for...loss of balance, dizziness, head banging, etc. We don't see that.

I asked about followup. She said, people follow up yearly and get a new MRI every five years. But if there are no symptoms, we won't really have anything to discuss. I said...okay...so a year from now can I just reschedule for the following year? "Yes. That would work."

And then I met with the neurologist. She put a giant purple ribbon on the entire encounter by telling me that because Lily two or more seizures we qualified for the "Epilepsy" package! So it turns out that by virtue of Lily's seizures she's considered to have epilepsy.

Here are some things to think about that maybe I never thought of before...Don't leave Lily unaccompanied in the bath (in case she has a seizure and falls under the water) ...or in the swimming pool (jesus...not that I ever would)...or really...anywhere that she could fall and get hurt in mid-seizure. ALSO...we're going to give you an emergency medication in case her seizures last more than five minutes.

Also also...we need to do a prolonged EEG to see if we can observe her seizures to better prescribe seizure medication for her moving forward. Okay...but doc...doc...hold up. Her seizures have all been pretty benign. I mean...she just sits and rocks and drools. No thrashing or tongue biting or whatever. Why even bother prescribing meds. What can it do for her? She only has one about once every three months if that, and when she does...she's recovers in a couple minutes and is good as new.

ohhhhhh...yeah...about that. We have this little thing in the world of epilepsy. Probably you haven't heard. It's called SUDEP. In order to minimize the risk of SUDEP it's important that we get her seizures managed.

Oh...okay..what's SUDEP?

Uh...well...it stands for Sudden Unexpected Death from Epilepsy. Fan-fucking-TASTIC! So yeah...

So yeah, we need her to be medicated. So I asked whether the results of a prolonged EEG would dictate which med she took. The doc more or less said that odds are it will be Depakote, but it might be this other drug (can't remember). But before they can prescribe Depakote they have to first do a POL g test because if the results of THAT come back positive, then they can't use Depakote. So I'm on standby while they negotiate with the insurance company to see if they can get the test covered.

Chapter 5: Revisiting the Aide Situation

In September my aide quit. Awesome. It'll be sooooo easy to find a replacement. (spoiler alert...I haven't yet found a replacement). A week after my aide quit we had a meet and greet with an aide. Again...she showed up. Again...I wanted to proceed. I took the day off on her first day to go over stuff with her. She didn't show up to get Lily off the bus. Thank god I was there.

It was probably for the best anyway, because it turns out, an aide can't legally give Lily any medication...including the emergency seizure med already in my house (for a seizure lasting longer than five minutes). So even though she'd have been covering Lily...once the med was prescribed she would have had to get replaced by a nurse.

I had to reach back out to the doc for a NEW letter of medical necessity including the NEW diagnosES so that the insurance could review and approve (they did...and did) a NURSE in place of an aide.

Soooooo...currently looking into the nurse situation. To date...One nurse interested in a meet and greet...failed to show up. In her defense...the agency indicated she had to go to the hospital. That was two weeks ago. She must be REALLY fucking sick. That agency offered me a male nurse instead. I politely declined.

I was super excited to take a half day off today to do a meet an greet with another nurse that was interested! But they called this morning. She took someone else's case first.

If you're keeping score at home that's six no shows. This morning's no show made me a lot sadder than I expected it to. I think I got my hopes up (the nurse thing has gotten more bites in less time than the aide thing ever did) but basically I'm still in the position where the one person who actually makes it to an interview and shows up for work...gets the job. I feel EXTREMELY comfortable with that. SARCASM!!!

Meanwhile my parents have been covering the bus drop offs and I've been attempting to work afternoons from home...which actually works pretty well, but does NOT have the blessing necessarily of my boss's boss and I'm worried that at some point it'll come to a head.

I'm frustrated. I'm anxious. I'm worried. I'm upset. I'm tired. I'm standing.

A friend of mine said this morning when I told her about the latest fucking no-show..."what now?"

And I told her, and I'll tell you...

What now?

Recover my mood. Reclaim my patience. Breathe in. Breathe out. Follow up with agencies. Wait. Beg favors from family.

Local nurses looking for work? I can actually guarantee you a job with any of the agencies that staff this shit. Insurance dictates the pay, but it's work. Inquire within...

Fin...

Epilogue: I've been meaning to write about Rett for a long time. But the cascade of new appointments and diagnoses all needed followups to understand and unpack. And each new appointment generated NEW appointments and diagnostic followups, and it never seemed to coalesce into "the big picture".

So now it has. I mean...I still have bone density scans and other stuff to do, but basically it's a relatively clear picture at this point.

Emma cut straight past the bullshit to a spectacular question..."So does this mean Lily doesn't have autism?"

For 8 years (seven?) I've been blogging about autism, participating in autism groups, even leading them. And here we are...not...autism?

The neurologist indicated she is still on the spectrum, officially. I guess it would be difficult, especially since Lily's Rett is atypical, to separate what is Rett and what is autism. And certainly the symptoms put her squarely within the DSM's current guidelines. But Rett IS genetic. You CAN run a "simple" genetic test and KNOW that your child has it. There's no grey area. No refrigerator mom bullshit. No engineer dad bullshit. No internet caused it bullshit. No overweight moms caused it bullshit. It's just a genetic anomaly...like Down's Syndrome.

But yeah...Lily is still autistic...

...with Rett, epilepsy, and a chiari malformation, and no fucking nurse. I'm going to run out of room on my chest for all these awareness ribbons.Jim W.http://firstname.lastname@example.com:blogger.com,1999:blog-6873182308469051103.post-9460636856402025552017-09-11T12:45:00.000-04:002017-09-11T14:23:01.108-04:00Anniversaries***The first half of this was written a couple weeks after Leslie passed**

I don't know how to do this. There's too much ground to cover. Eulogize? Explain? Vent? Maybe all of the above.

My best friend...my wife... passed away on April 7th. I didn't have a lot of time to prepare for it, but I suppose I had more time than most people do. She'd been sick for years. Cancer.

I know, fuck cancer, but I don't even really hate cancer. I just hate the circumstances. This was round three. The first two times we knew we'd beat it. But it was like that cat in song that just kept coming back the very next day. Always a sucker punch away.

It all started with a cat, actually. We got Emma a cat. I'm allergic. Leslie always said, "I'm not allergic to cats, just dogs," but when we brought the cat home, she started coughing and wheezing just like I did. She didn't like her PCP (primary care physician) so she hated making appointments, but my doc gave me Singulair and I started taking it and I got better. She finally caved in and got allergy meds too, but she didn't get better.

We finally went to the doc and had an x-ray that showed fluid in the lining outside her lungs. I can't make this super medical or complicated, or this post will be impossible to read, but where most people inhale and their lungs expand into the empty lining around their lungs...Leslie's lining was slowly filling with fluid that wouldn't allow her lungs to expand into it and she couldn't breathe.

They biopsied the fluid and it was cancer. "But the cat came back the very next day..." Metastatic breast cancer. I made the mistake of googling what 'metastatic' meant. Leslie didn't. She didn't like to know the odds against her.

Scans/tests/new chemo...pleural drains/dressing changes...it got worse. A couple months later she switched chemos and things started to stabilize. But then they didn't. And then the other lung couldn't expand. And it got harder and harder for her to breathe. And then she was wearing oxygen. And then we were turning the oxygen up higher. And higher.

It seems like that process took forever. It seems like she was on oxygen for years in hindsight. But she wasn't. I think I/we were so busy reacting to symptoms that we forgot to tell people she was sick again. Or maybe we were just tired of giving people the same bad news all over again.

She started working from home when she couldn't climb the stairs at work. She never made it back. She worked from home for months. On good days she'd bring her laptop downstairs and we'd all be in the same room together. On bad days she'd stay in bed.

I was leaning heavily on family and friends.

Leslie and I used to say that we'd never been tested. Despite perceptions about what Lily's diagnosis meant for our family, with a few hiccups here or there, she never really tested our capacity to care for her. As Leslie's ability to help around the house dwindled, I picked more up. I had the room. It's amazing to realize how much your wife does when she's not longer physically capable of doing it. I picked up more and more things as she was able to do less and less, and STILL I thought..."I've got this." But it was only because my in-laws and parents were picking the kids up every day after school. Leslie had lost the ability to walk to the bus stop to pick up Lily. I started feeling tested. I started to wonder just how any single parent could do that day in and day out without support.

I'm very supported by friends and family. But I know not everyone is. I tried to imagine how I'd do it without support but couldn't. I was getting to work late so I could drop kids off before leaving for work, but at least I was able to work a little later because grandparents were there to get my kids off the bus for me. Sometimes they'd start cooking so that I didn't have to when I got home. Sometimes they'd make the kids lunches for me.

Leslie was guilt-ridden. She felt like she was abandoning the family. She felt like she was failing me. She felt like she was a burden. I tried to tell her that caring for her was my greatest honor. I struggled through tears to tell her every time, but I did..."Caring for you is a privilege. I feel like I finally have a chance to pay you back for all the care you've given our family."

We finally went to the hospital when the oxygen concentrator at home pegged out at 5 lpm and Leslie still couldn't get enough to breathe. She was having panic attacks in the middle of the night. Sometimes three or four of them. She'd wake me to help calm her down, fetch medicine to help her, turn up the oxygen...but then there was no place to go. We needed help.

We went to the hospital for a tune-up. Get the meds under control. Get the breathing under control. Get the anxiety under control. Her parents were worried. It was their 50th anniversary and they'd arranged a cruise. Leslie begged them to go. Told them she was fine. The day after she went to the hospital she was like a new person. I emailed her folks to tell them how much better Leslie was doing. But that was the high mark of her visit. It went down from there.

A few days later she was still in the hospital. She had some close friends visiting and the physician's assistant pulled me out into the hall to talk to me. "I'm telling you this because I think it's the right thing to do." They told me that the cancer in her lung had progressed beyond their ability to treat it. They gave me the option: make her comfortable or keep fighting. She had chemo scheduled the following week. I asked how long they thought she had...sucker punch...absolute best case scenario, "months"...worst case..."today".

So I pretended I knew nothing while I went back in to smile and chat with Leslie and her friends and inside I was thinking..."Jesus, this can't be happening. How did this happen? How could we not have known?" I think I spent the night that night. The staff met with me the following day and I told them I needed to find out whether Leslie wanted to know. It's something she typically wouldn't want to know. I had them ask her hypotheticals about what if THIS doesn't work, or what would you like us to try if THAT doesn't work. I knew that if I asked, she'd know.

They got to a point where she told them she wanted to know and they told her, and then I went to see her and we just sat there and cried and held each other and I felt like somebody had just put a big hourglass on her bedside and the sand was running out.

We told each other so many nice things. Every day from the day I learned, I resolved never to leave anything unsaid. I told her how much I loved her and how much I respected her and how much she'd changed me and what a great mother she'd been and how much I'd miss her. And we knew we had to tell Emma.

I talked to a social worker and a grief counselor and googled things and by the next day I'd made notes on what to tell her. There is nothing I have ever had to do that is harder than having to tell Emma that her mom was going to die. Nothing.

So here are the notes...I more or less memorized them for our talk with Emma, but these are them:

"Some doctors think that the cancer on Mommy's lungs is too far along to stop. They don't think they can make it go away. And that Mommy's breathing will continue to get worse and not better, and that all they can really do is to try to make her more comfortable as it gets worse, not cure her.

We just found out about this. We didn't know how much damage to her lungs the disease had done. As soon as we found out we started talking to people about the best way to tell you. We don't want you to think we've been keeping it from you. We just didn't know.

1) Doctors don't know everything. Mommy's cancer doctor still wants to treat her. They can guess. They can estimate. But every one is different. We just know that it makes sense to make the most of our time with mommy right now while we know that we can.

2) Your mom is a fighter. She is not giving up on treatment and neither should you.

3) God is with us always. God has provided mom soooo much comfort throughout this struggle. This isn't God's fault. Lean on God. Pray for comfort. Pray for guidance. Know that mommy loves God and that God loves us all.

4) No matter what, mommy will always be with us. Her love, her guidance. We want her to live with us as long as she can, but if she has to go, just know that her spirit will never EVER be gone from our lives.

5) We need to love each other and be here for each other. This is the hardest thing we will probably ever have to do. But we can do it because we are a strong family with a lot of love."

Leslie's three biggest worries...that Emma would hate God, that Emma would think she was giving up without a fight, and that Emma would think we'd hidden how sick mommy was from her.

And she took it very well. She just sort of slumped slowly against Leslie in her hospital bed and Leslie stroked her hair, and she cried and buried her face in bed. She spent the day with us in the hospital just being with her mom.

When Emma finally went home (staying there was too traumatic with the panic attacks) Leslie and I talked again. About how much time she had. And Leslie said, "I just want to see Emma get married," and I just shook my head and we cried. And then she said, "Then I want to see her recital," and I knew there was no way, but I just said, "Let's get to chemo and then work on getting to the recital."

****

This is as far as I made it two years ago when I first attempted to write about Leslie's final time with us. I decided to write about other things. Good memories. The stuff we've missed together already...the stuff she'll miss in the future...that stuff is just too hard. Too sad. Too unfair. And ultimately...not a healthy way to approach this loss. I eventually wrote more about it here...One to Make You Cry...but that day I just couldn't.

It's 9/11 today, and while most people are thinking about the lives lost in the Twin Towers and the Pentagon, and in Somerset...I'm thinking about my wedding anniversary, and the woman I lost. The woman I married 18 years ago.

A friend asked me if today is hard for me. It's not. I don't know why it isn't...but it isn't. When I think of our anniversary I'm not thinking of hospital beds and labored breathing. I'm not thinking of future anniversaries uncelebrated. I do try to take some time to think back on a pretty happy, mostly successful marriage that...yes...ended before it should have. It IS still sad to me. When I allow myself to think too much about it, it's so very sad. And honestly, I know that the hearts of the people who love me are in the right place when they reach out on our anniversary to give a little extra love or tell me to hang in there...but...ironically...this isn't hard for me unless I'm deliberately thinking about it, which those messages invariably force me to do.

And please...if you're one of those people, don't stop doing you. I know you're supporting me, and thinking about it, though sad, is worth my time. It's worth it to remember something special. Always.

But...apart from snot-nosed blubbering from rereading what I wrote two years ago...this is still a happy day for me. I made the right decision 18 years ago. All the branched paths that our decisions took us on together led me here. My family is doing alright. Our children are such a joy to me. The house we picked together continues to grow and change (for the better I hope) and I continue to remind Emma and Lily of all the little ways that their mom's love and life brought us joy. Just as they remind me daily of how blessed I was in having children with her.

I thought I'd written about our wedding day and put it in drafts, but I didn't. I kept inching up to it incrementally and then not writing it. I thought maybe I'd write about it for our anniversary, but there's too much.

*long breath in...hold it a few beats...long breath out*

I feel like I'm pretty mentally healthy. But there's some weird stuff going on in my head space (heart space?). As I move forward in my life and try to find "ME". Not me without Leslie...just me...I'm encountering some residual fear and anxiety about relationships and opening up that may or may not have something to do with losing her. It's nothing earth-shaking. But it's something that I see is...NOT healthy. Or MIGHT not be healthy. So anyway, despite basically badmouthing the therapy industry my entire adult life, I'm making plans to see someone to just talk about it. See if there are things I can think about...homework maybe...that will help me keep moving forward.

Anyway, I feel like that's something people should know. Not necessarily about me, but about life. Sometimes you need help. Sometimes you don't "got it". And then you get help. Sometimes going into the woods and breathing the clean air doesn't "fix it". Sometimes "pulling yourself up by the bootstraps" doesn't "fix it". Sometimes compartmentalizing doesn't "fix it". There may be no fixing it at all, in fact. There may just be "adapting to it".

I'm happy. I really am. This is just something I need to address to be happier. HappiEST.

In conclusion...thank you for all your thoughts/prayers/hugs. Please don't stop sending them when you think of it. But also, just know...every day is just like every other day. I honestly don't feel any sadder on the anniversary of the day Leslie passed than I do on the day we were married. I don't measure time that way (maybe that's a good/bad thing...not sure). You won't see yearly posts about THIS being the Xth anniversary of the day Leslie died (That day isn't something I care to commemorate. I'd rather celebrate her life) or THAT would have been our Zth Anniversary.

But...I'm fine. I'm happy. And when you ask me how I'm doing because today is X...it makes me sad but only because it takes it all out of the compartments I have carefully set up for it and dusts them off and makes me look at it. But it's worth doing. It's worth remembering. It's worth being sad. And then remember happier times together, celebrating them, and moving forward.

Jim W.http://firstname.lastname@example.com:blogger.com,1999:blog-6873182308469051103.post-11235953195704432302017-08-22T11:14:00.001-04:002017-08-22T11:14:08.555-04:00A Touch of LaceLily has been growing like a proverbial weed. She's sprung up almost overnight, finally cracking the "growth chart" she's loitered below for so many years. Every time I take her to a doctor's appointment...and that is "many"...I note her measurements. You know that baby book you keep for like the first 18 months of your baby's life and then forget where it is? That's going on in my iphone right now.

See attached chart below:

I like charts.

She's gained almost 30 pounds in less than two years. It's pretty amazing. So much of my "autism narrative"...so much of how Leslie and I reacted to Lily's behaviors was overridden by a desire...a NEED to get her weight into a more healthy range. Now though...game on. The kid's killin' it at the dinner table. Now I don't feel so...threatened by her loss of patience when she eats. Now I don't feel like it's imperative that she get SOMETHING in her, so why bother with working on her self feeding. Time to refocus. Kid's got some wiggle room (no wiggle-related pun intended).

So anyway...growth spurt. Her feet apparently also grow. Sometimes I forget that. My parents noticed her toes might be stretching the fabric of her current footwear and took her shoe shopping. Mom sent me a picture. Lily's favorites were the powder blue ones, but I liked both. She refers to colors by their corresponding wiggle. The powder blue were "Blue Anthony Shoes".

Side by side comparison of blue anthony shoes and also...blue anthony shoes

It will become more complicated when she wears the red and navy blue ones. All blue shoes are blue anthony shoes...so... pointing may be involved.

At Lily's current shoe size...(Big kid size 1) the velcro options are dwindling. I reached out to fellow autism parent, blossoming autism blogger, and AC of PA staff member, Jen for suggestions on clickable shoe closures. I knew her son had them because she had initially struggled getting them on his shoes. She pointed me to Zubits website. I then went to Amazon and found a pair of knockoffs (Aircity) at half the price. I bought white because I thought they'd look sharp with the shoes, but also look decent with ANY athletic shoe. But they have tons of colors.

In a nutshell...they are powerful magnetic closures that you lace your shoelaces through then use the magnet to open and close them. They look like this...

The magnets are STRONG, but you can get varying strengths for bigger (or smaller) people up through active adults using them for running shoes. I Amazon Primed them and a couple days later I followed the simple directions and within a couple minutes (like seriously, Jen, what the hell was your problem?) had them on her blue anthony (not the other blue anthony, they have velcro) shoes. I was pretty excited.

She's been wearing the powder blue ones pretty much, but when I picked clothes out for her first day of school I thought the darker shoes would be a better contrast and not too "one note".

Note shoes.

Yeah...I um...didn't try them on Lily before I fully tightened the laces into the closure and snipped the ends. I tightened them so much they wouldn't fit over her feet and then close. I um...can't fix them because I already clipped the ends of the shoe laces so there's no flexibility to loosen the laces and start again (so...sorry Jen).

So...today I'm shoelace shopping. We'll try again tomorrow. Jim W.http://firstname.lastname@example.com:blogger.com,1999:blog-6873182308469051103.post-39179716384292909692017-08-10T17:04:00.000-04:002017-08-10T17:07:36.433-04:00Conversational EnglishI was telling my friend Bec that "I'm well" in response to her question asking me how I was doing the other day. I told her that's my new default instead of "good thanks", and told her this story.

My boss's boss's boss is named John. That's not super relevant to the story but I figured John would be easier to type than "my boss's boss's boss". Anyway, John has the corner office on our floor and he's super nice and outgoing and every time he sees me he says, "Hey, Jim, how are you doing?"

And I say, "I'm good thanks, how are you?"

And without fail he says, "I'm doing really well, thanks." And I immediately think...you sonofabitch...did you just fucking subtly correct my grammar??

So I'm like...god dammit...this is my boss's boss's boss. I will be damned if I'm going to allow this shit.

I'm doing well...I'm doing well...I'm doing well...I practice it in my head. It's so informal and "Montana" to say "I'm good, thanks". It's ingrained.

I'm doing well...I'm doing well...I'm doing well...

So the next time I see that son of a bitch I'm all prepped and ready.

And he says, "Hi Jim, how are you doing today?"

And I reply..."Good, thanks, how are you?" ( GOD DAMMIT )

More practice...

The NEXT next time I see him I'm fucking ready. He says, "Hi Jim, everything going alright?"

What. The. Fuck. He flipped the script. Well...i have no response to THIS. we didn't prep for THIS. Who can answer something like that off the cuff?

"Doing good thanks" (FUCK!)

The NEXT next next time I landed it, but stammered a bit, (.5 deduct)...

I used his own words back at him. "I'm doing really well, thanks," but it tripped over my tongue. Wasn't "natural".

And I realized that for some reason I OFTEN say, "I'm well" to people. But...for some OTHER reason...never in response to John. So...now when people ask me how I'm doing...it's "I'm well". And I'll keep fucking saying it until it's so ingrained in my head that when that friendly sonofabitch asks me it'll flow as smooth as McDonald's soft-serve ice cream..."I'm well, John, how are you?" I'll say. See how he likes THAT!

Meanwhile...he has no idea that I'm hostile about what is probably not a subtle grammar correction, but just the same thing he says to everyone.

UPDATE:

So today, he sees me in the hall, and basically now I have a brain block around John. I start breaking out in a cold sweat whenever I see him. I've got the conversational yips. So I see him walking toward me and he says, "What's the word?"

And I froze like a deer in the headlights...because who the fuck EVER knows how to answer that question, and also...because I was still all "I'm well, thank you, how are you?" like I'm just learning to speak English and think everything anyone says is "how are you". Couldn't get my high powered brain to just go on autopilot the way it's supposed to with conversational niceties.

So instead, I just totally ignored his comment and gave him mine "I'm well, thank you, how are you" and then he said, "Doing okay, how about you?"

"Good thanks"

DAMMIT!

Jim W.http://email@example.com:blogger.com,1999:blog-6873182308469051103.post-16232343025612925522017-07-17T11:16:00.000-04:002017-07-17T11:21:21.291-04:00RemindersThis weekend I finally marked "complete" in my phone reminder to "Add polymeric sand to patio". I think I put that reminder in my list while Leslie was still alive, if that tells you how long you can ignore a daily reminder. The first week you're like..."RIGHT! I have to get that started." That continues off and on for a few months. After that you realize you're not doing it, so you turn off the notify thing, but you're still thinking..."I'll get to it," so you don't actually delete it. After about a year you just don't even actually see the reminder. I think I stubbed my toe on the polymeric sand in my garage getting out of the minivan and that got me thinking I should complete it this year. That, and I've been actually using my reminders more consistently as a tool to combat my continuously-decaying short term memory. (Highly recommend this)

Last year I ALMOST did it. The job has more to it than just "add sand" though. I had weeds growing through my patio cracks pretty much...everywhere. And the sand fills the cracks like grout would. It's super simple but...

First I needed to kill the weeds. Roundup. Fine. I did that last year. Then waited a couple days...did it again for the ones that lived. Then pulled them. Then stalled out before I could reach the next phase...

Pressure wash patio. I almost stalled out on that again this year. It seems the $100 pressure washer I bought 15 years ago is no longer getting up to pressure. I thought maybe my hose was too long (ba dum bum) and almost stalled out again holding up the project until I got a shorter hose. But after pressure washing it a few times (my dad loaned me his pressure washer and even took a turn pressure washing it before I got to it) and then pulling any remaining weeds not already dead or dying, I finally got past that stage.

When the patio was originally installed...seven years ago maybe?...they had me fill the cracks with polymeric sand, and it probably lasted three or four years without any weeds poking through before each subsequent year stared getting worse. It looked horrible. Finally had enough.

Anyway..."completed." Thanks for the reminders.
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I've been having some great successes lately with cooking. I'll share some of those on the blog at some point. But this weekend I had a couple "setbacks".

Yesterday was National Ice Cream Day (I guess). I recently bartered for my friend Kate's unused Cuisinart ICE-21. I've always wanted an ice cream maker. For Emma's birthday in March I actually made "no churn" ice cream that turned out amazingly well (and was super easy), but I was eager to try "the real thing".

I talked to Emma about it and we decided to start out simply before doing anything crazy. We decided on vanilla. Kate gave me a couple pointers (put the inner tub in the freezer for at least 24 hours before starting, chill your ingredients as much as possible before starting, and don't run the machine more than about 15 minutes unless you want to burn out the motor).

I needed a recipe and asked her for one, but she was on the road and just told me to google cuisinart recipes, which I dutifully did.

Except. Except I didn't pay attention to WHICH cuisinart ice cream maker I was getting the recipe for, and ended up making about twice as much as the ICE-21 can fit.

I followed the recipe. It said 30-35 minutes in the machine. I thought about Kate's warning...but it was the Cuisinart recipe...how could that be wrong?

I discovered my error about 35 minutes later when my mixture was still soup. I reread the recipe book and saw that the filename of the Ibook was ICE-35 recipes. uhhhhhh...

The bright side is...the mixture isn't wasted. And I didn't burn out the motor.

So Kate advised me to just split the mixture in half and try again the next day. (That's today, by the way). So...my mixture is in the fridge chillin', my tub is in the freezer, freezin', and hopefully tonight I'll be making ice cream. Happy belated National Ice Cream Day!
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Meanwhile...I decided to make a roasted red pepper for hamburgers. I thought...roasted red pepper, avocado, and provolone would be a nice burger combination. So I took the red peppers out to the grill and started them cooking. Once I got back in the house I changed my mind about the burger, deciding we'd had them too recently, and decided on spaghetti instead.

I remember thinking...maybe I should set a timer for the pepper so I don't forget them. But I decided I wouldn't.

This morning I woke up and looked out at the patio...it's so bare with all the furniture still off in the grass, and it looks so nice with all the cracks filled with the hardened sand/grout and not a weed in sight. I glanced at the grill (which I'd rolled back the previous night to roast the red peppers) and froze. The red peppers!

They were done. The gas was gone. They were done and sitting on the grill, black as pitch but perfectly in shape. I picked one up. It was paper light. I squeezed and it cracked, crumbling to powder under the pressure of my fingers.

I should have set the timer.

Delicious..."blackened" roasted red pepper...patio with polymeric sand in the background.

Jim W.http://firstname.lastname@example.com:blogger.com,1999:blog-6873182308469051103.post-28565102841135373062017-06-29T14:17:00.000-04:002017-06-29T14:18:11.155-04:00Easy ShrubsThe first time I'd ever heard of a shrub I was trying desperately to decode Smallman Galley's cocktail menu. In general, the whackier the cocktail, the more I want to try it. Smallman Galley (a local "chef incubator" has a bar menu filled with whackiness.

I didn't actually even TRY the drink with the shrub in it...just noted it on the menu as I tried to make sense out of ANY of their offerings.

The cocktail in question, "Here and Now" was a solution of "Market Alley" gin, dry curacoa (don't know how to make the little tail on my c), summer berry shrub, and lemon. The one I tried instead was Vilified. I found its contents more exotic. BUT...I noted the term "shrub". And learned that it was a way of preserving fruit juices/syrups in a vinegar solution. It sounded kinda gross if we're being honest.

each ingredient less likely than the last

Except, a month or so later, at a Yelp Elite event at Muddy Waters (an amazing local oyster joint (probably they wouldn't appreciate that appellation, but here we are)), Boyd and Blair Vodka gave a two station presentation...1) Making a shrub, and 2) Creating a holiday punch from said shrub. I tried the shrub. The shrub was delicious. I took pictures.

the shrub

the punch

Right then and there I vowed to make a shrub. It was easy! I would make a holiday punch for thanksgiving from the shrub I'd made (I didn't) or maybe Christmas (I didn't). But the thought was there. And I did make a shrub that November. I just...I just kept forgetting to buy cheesecloth to strain it when I was done.

For months that shrub sat in a 32 ounce mason jar in my refrigerator, and two days after I finally pushed the button on my amazon app purchasing cheesecloth, it arrived on my doorstep (on a Sunday...god bless you, Amazon). I strained. I invited my sister over later that week. And we got to work. Drinking.

Okay...

Apparently the idea of the shrub dates back to colonial days. Seasonal fruit was preserved using vinegar and sugar, jarred and stored until needed/wanted, straining the fruit through cheesecloth left a mildly vinegar-tasting fruit syrup, or shrub. Mixed with club soda, or carbonated water, you basically have shrub sodas, or drinking vinegars. Mixed with spirits...you have excellence.

Boyd and Blair's original recipe (they handed them out on printed cards at the Yelp event) was holiday-esque, it was spicey and wintery and delicious, and although I wanted to replicate it, I was missing some of the fancier ingredients.

I still have this card in my recipe box.

Couldn't find it on their website, but they have some awesome drink recipes WITH shrubs.
http://boydandblair.com/recipes/

But you can basically make a shrub out of any fruit/vegetable that's juicy. The more fibrous fruits/vegetables don't work as well. I loved the idea of strawberries and basil. I got a package of strawberries and some fresh basil along with unfiltered cider vinegar and some mason jars and a fruit masher and a canning funnel (that delivered months before I realized I needed to place my cheesecloth order).

There are several ways to make shrubs. Two main ways...hot or cold. There are several great posts on the merits of each (easily searchable..."how to make a shrub"), but broken down into very basic terms...cold keeps the brightness of the fruit better, hot minimizes the tang of the vinegar better. Why I use the cold method, however, is because it's suuuuuuuuper easy. And I'm a single dad raising two kids, one of whom is autistic. I like things easy. Easy is my jam.

Okay...Cold method...there are a couple approaches to this as well:

1) mash fruit, mix/mash with sugar, let sit a few days, add vinegar, mix, let sit a couple weeks.
2) mash fruit, mix/mash with sugar, add the vinegar, let sit a couple weeks.

I picked the easier method of...just throw all the shit together and mash it up and then let the vinegar and sugar do its work. (method 2)

If you look at the Boyd and Blair recipe, there are some decimal places there that I thought were too complicated. I simplified my own version to be...in essence this:

1) 1 1/2 cups of mashed fruit (take a bunch of cut fruit, toss it in the mason jar and mash the shit out of it until it's down to 1 1/2 cups. Add more fruit until you get 1 1/2 cups mashed.
2) 1 1/2 cups of sugar (I then take the fruit muddler/masher and mash the shit out of the fruit with the sugar until it's all one big syrupy mulch)
3) 1 1/2 cups of unfiltered cider vinegar (or however much room you have left in the 32 oz mason jar)

Easy. Close the lid, shake all up until the sugar granules are all fully dissolved (if they weren't already) and put it in the fridge. I labeled my jar with the date since you're supposed to wait a couple weeks. Every day I'd grab the jar, mix it all around, and put it back in the fridge. Until...I didn't anymore. Because it was months before I had cheesecloth.

When I finally had the cheesecloth...I strained the syrupy mashed fruit mix through it into another jar and I had my shrub. It smelled amazing...strawberries and basil...and yes, a hint of vinegar.

I encourage anyone who wants to try a shrub to start with strawberries and basil. It's amazing...

My sister and I collected some mixers together and made the following:
1) Strawberry basil shrub mule (with ginger beer, vodka and a bit of lime juice)
2) Strawberry basil shrub old fashioned (bitters, bourbon, teaspoon of sugar)
3) Strawberry basil shrub with rum and lime juice
4) Strawberry basil shrub margarita (tequila, cointreau, lime) (not pictured below)

They were ALL. UH. MAY. ZING. Seriously, I would have thought at least one of those things would have sucked a little. None did. None sucked. They kicked ass. No sucking. All kicking.

So...I made more...blueberry ginger, cherry, grilled pineapple with jalapeno, and, in honor of Donald Trump...peach mint! mmmmmpeachmint. All soooo good.

peach/mint...skins...no skins...no worries!

blueberry ginger

cherry

And then I was at another Yelp Event at Tres Rios where they served a roasted red pepper margarita. "Nobody else in the city is making this margarita," they said...NOT. SO. FAST, Tres Rios...I roasted red peppers and jalapenos...I mashed, I mixed...and right this very minute there is a roasted red pepper/jalapeno shrub aging in my refrigerator waiting for its turn in the margarita merry-go-round. It smells soooooo good.

It's gotten a bit out of hand, I'm not going to lie. The other day, Emma tried to put something away in the fridge and she said, "Dad, can we move all your 'special juices' to the basement fridge? There's no room for food." And she's...she's sort of right.

I'm taking a brief break from shrub-making and transitioning over the fourth of July holiday to shrub DRINKING. But there will be more. So many more.

If you decide to shrub here's the equipment you'll need:

1) 32 oz mason jar
2) Fruit masher
3) cheesecloth
4) canning funnel (optional...but it's less messy)

The recipe is constrained only by your imagination and budget. Healthy people are drinking unfiltered active yeast vinegars these days, and while I can't speak specifically to any health benefits I'm observing...I did feel pretty amazing after my sister and I finished our cocktails.

Despite the health benefits of the unfiltered cider vinegar, nothing is holding you to it. Use champagne vinegar, red wine vinegar, balsamic vinegar...whatever you think. The same is true of the fruit the sugar and any spice you use. The recipe amounts to:

1) fruit or vegetable you want to preserve/shrub
2) spice (optional) you want to mix with it (I recommend basil/mint/jalapeno...it cuts the vinegar smell and taste and if you pick well, pairs really nicely with your fruit)
3) sugar (this can be any sugar...cane sugar, raw sugar, maple syrup...whatever you think would be a nice mix with the fruit/veggie you selected)
4) vinegar (again...any vinegar will do, but I highly recommend the unfiltered cider vinegar)

and that's it...1 1/2 cups of mashed fruit veggie of choice with spice of choice, 1 1/2 cups of your sugar of choice, 1 1/2 cups of your vinegar of choice....mash/mix...refrigerate two weeks, mixing daily. Strain and mix in cocktails or carbonated water.

mash up your fruit

add sugar

mash it all up

add vinegar

label with the date (if you're forgetful...like me)

refrigerate two weeks, mix every day or so

strain a couple weeks later! voila!

Experiment with how much you want to use. With cocktails we basically used 1:1...1 shot of shrub with 1 shot of liquor. With carbonated water, there weren't any other flavors so 2 shots of shrub made a nice fruity flavorful summer ...shroda (props to Kate for the portmanteau name).

cherry shroda!

Great for summer bbqs. Kids or adults...

Drink responsibly.Jim W.http://firstname.lastname@example.com:blogger.com,1999:blog-6873182308469051103.post-80979762658699201812017-06-26T13:15:00.001-04:002017-06-26T13:30:29.723-04:00Dance RecitalWe also...and I promise...shrubs, but later. We also had a dance recital. Dance has been rough this year. Emma's high school schedule has been more demanding of her time. Whether it was school work, the play (Cyrano de Bergerac) or the musical (Les Miserables), Emma just always had somewhere to be and something to do, and although people stepped in to give rides to and from where needed...I often felt like I was just sort of being carried along like parental schedule flotsam.

But...we made it. And Emma and Lily both had their recital and both did great (Lily even went as far as to audibly proclaim "nice job everyone" before being escorted from the stage by her new TSS (who seems very nice).

And just like that...we're here. We're in that place where kids start narrowing their foci. Where Emma must also. Gone are the days of soccer, lacrosse, softball, and dance...trying things out just to try them. There's no more time. She has work. She has schoolwork. She has dance. There's not much (if any) room left.

I'd love to give her opportunities to try new things. But...if she juggles that ball, another will fall from her grasp. It's a milestone. She can't do it all. Some day she'll probably regret not...trying out for the lacrosse team...or something. But she can't. There's no more room.

As it is, I've told her she can pare down her dance schedule, focusing on the dances she loves and leaving those that she...doesn't love...behind.

Leslie always wanted her to continue with ballet. Her reasoning was that all the other movements were derived from that sort of basic balletic movement. And she was probably right. And I'd love to bounce this decision off her...but I think ballet has to go. I think she'd get it.

Emma told me, "I'm not going to be a professional dancer," and I agree. She is a beautiful dancer, emotes in a way that I don't think can be taught...but lacks some of the skills and flexibility of some of her peers. She'll continue to dance. She'll get stronger and more skilled. But...it's not going to be her job.

She loves tap and contemporary...even jazz. But ballet has been sort of an afterthought for her for years. And I'm ready to let it go. Given everything else, I think it makes sense. She's AMAZING to watch tap. She can focus on that. She loves it. And it's a hobby, basically. She's getting in shape, part of team, gets to perform...but a hobby.

It's sad that things have to fall out of our schedules, but the demands on these kids' time is incredible. And she needs time with friends too. And with her family.

Anonymoushttp://firstname.lastname@example.com:blogger.com,1999:blog-6873182308469051103.post-407023769983234662017-06-20T13:20:00.003-04:002017-06-23T07:57:49.829-04:00I LiedI 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.

Anonymoushttp://email@example.com:blogger.com,1999:blog-6873182308469051103.post-51021215958056793142017-06-20T12:48:00.002-04:002017-06-20T12:48:44.078-04:00Summer BreakHi it's me. Jim. Jim Walter. The...guy with the ...hair? I know, I know, it's been a while. I've been writing, but the writing I've been doing has been for Healthline and not my blog.

So...to update you. When last we left our hero, she had a seizure at school and I took her to the ER and stuff. And since then I've learned...nothing.

I scheduled an EEG. This was done...jesus...a month ago maybe? Probably. I've heard nothing. I scheduled an MRI. That's Friday. Not looking forward to sedated Lily. It's hard to watch. But that's Friday. Then all the doctor visits...geneticists, neurologists, pediatricians, oh my!

But they're so far out that I'm probably going to call someone and ask them to tell me what, if anything, they found prior to the appointments (I think I'm in August for the geneticist).

School is out and Emma got her first job. It's fucking adorable if we're being honest. It's a huge pain in the ass getting her there, but my folks have been helping, and friends. So far so good. She's been making it to work on time whether it's me sending her or not. She hasn't gotten paid yet. I'll be curious what her reaction is. Honestly I think she'll just be excited. She's a very laid back kid. If it had been me, I'd have multiplied hours by rate and been crestfallen when I saw the damage income tax does...but Emma? She probably doesn't have any idea how many hours she's worked. Or how much to expect. She'll just be like..."money!" and run off to the mall to spend it immediately.

Lily is still sleeping like shit. I'm in phase two of the "fix lily's sleep" plan. I talked to her doc, and he sent me a great list. In fact...in fact, let me grab that list and post it for you folks who have kids who struggle with sleep. He has some great bullet points and pros/cons of different fixes. Some of you even posted some of the stuff he's got marked on the list as possible things to try. From his email:

 The options for supporting sleep in children have greatly lessened over the last few years:

Atarax / hydoxyzine-basic science indicates risk of arrhythmia if used nightly.

Benadryl / diphenhydramine-risk of dementia in elderly…risk of neurocognitive dysfunction in children.

Clonidine and Tenex: only last 4 hours, causing awakening. She did poorly on Tenex in past.

Risperidone-may be tried in the next week, must consider side effects of atypical antipsychotic agents.

Remeron-not recommended for young adolescents

Trazadone-may be tried in the next week at 25 mg orally q evening, but many side effects….some overlapping atypical antipsychotic agents.

Plan:

5-HTP supports serotonin increase, and a 25 mg capsule opened into food ½ hour before bed may be helpful. Kirkman, Thorne, Pure Encapsulations, Metagenics are good companies for this product. Occasional paradoxical nighttime awakening occurs….but worth a try and otherwise benign.

Assure that all nutrients but Magnesium are given in the am or afternoon, and none after 6 pm, as many are activating. Try moving Magnesium 180 mg / ½ tsp to ½ hour before bedtime, as it is often calming.

Turn off any nightlight in the room, if tolerated.

Deep pressure massage of back for 10 minutes prior to bedtime can sometimes increase relaxation (no training necessary).

Decrease any food that she craves greatly, as an IgG antibody to that food can come off the brain in the middle of the night, causing night awakening. This often happen with dairy, wheat, and soy products.

Emerging clinical experience supports the use of a form of essential oil, lavender, a few drops rubbed into the feet, as helpful.

Stop Melatonin SR (which usually works 8 hours, not 4 hours, for my patients). When she awakens in the middle of the night before 4 amMelatonin 1 mg orally can be given.

If no improvement after a week of the above, we will discuss the Risperidone and Trazodone alternatives.

This is one doctor's opinion, and please don't take my list and run with it, because...results may vary...but if you're struggling with your own sleep issues, or your child is...these would be some great talking points to bring up with YOUR doc.

So where I'm at is...I stopped the sustained release melatonin. I started giving her 1.5 mg (half a 3 mg tablet) when she wakes up in the middle of the night. I started giving her 5-HTP (though they only sell 100 mg capsules, so it's pretty dicey about exactly how much she's getting. other people sell 50 mg, but are like twice as much as the kirkman capsules). I started giving her the Mg supplements at night. I started turning off her nightlight when I first get her to sleep.

Annnnnnnd...I don't really know that I've seen any improvement. Last night she got up at 2 a.m. By the time I staggered back to bed it was 3:30. I KNOW I didn't live through anything close to 1 1/2 hours of struggle, so I must have dozed off at some point, but it's hard getting that mid morning wakeup interruption and then dragging ass out of bed at 5:30.

This is still a work in progress.

Lily's aide is working out well so far. SO much less stress worrying about parents and in-laws driving 40 minutes to watch her every day so I can complete my work day. There's still the issue of Emma's work schedule, which Lily's aide doesn't support, but so far that has been workable.

I've been cooking more. Shrubs, pies, ceviche, bbq jackfruit for fucksake!, and I enjoy it. My niche is typically...what can I make ahead and get leftovers of, and I'll probably post a recipe or two in the near future. Next blog I'll wax poetic about shrubs. Not the kind Sean Spicer hides behind...the fruit/vegetable syrup that can be used in cocktails or sodas. They're awesome.

Grilled pineapple and jalapeno shrub margarita

That's it for now. More later. I won't promise I'll write more here...because I always seem to go in fits and starts, but I feel like writing more, so it's certainly more likely.
Anonymoushttp://firstname.lastname@example.com:blogger.com,1999:blog-6873182308469051103.post-84077658197008659142017-04-27T12:43:00.000-04:002017-04-27T12:43:11.114-04:00Rough PatchLots to unpack here. Where to start...

Lily, always a good sleeper, if somewhat more of an early bird than daddy might like, is not a good sleeper anymore.

She goes through these little...streaks or trends or phases, so in the past, when she hasn't been sleeping I sort of chalk it up to a phase, or maybe she's coming down with something. But at this point...it's been since daylight savings time last October ...I think I'm ready to say, "she's not a good sleeper".
It could be worse of course. Autism/ADHD and no sleep seem to go hand in hand a lot, and I've certainly had a nice long run of "in bed at 8 and up at 6". Now we're at "in bed at 9 and up at 3". That's painful for a guy who can't get to sleep much earlier than 11 on the best of days and usually gets to bed around midnight only to wake up at 5:30 to start my work day.

So to go to bed at 11...or midnight...then wake up at three for the day is...draining. I wrote a little about what it does to me when I'm sleep deprived >>here<<, but in a nutshell...the patience I need..NEED to deal with some of Lily's challenging behaviors is not in abundance. Or Emma, honestly. I snapped at her yesterday for something that I ordinarily would have just laughed about.

So that's the first thing. I need to find a "solution" to this problem. I use a monitor in Lily's room. That way I can tell when she wakes up and get her on the potty.

I could turn off the monitor. Except she has been getting out of bed and coming down the hall, or even the stairs lately. And she is not the best at stairs. Especially if she's wearing slippery socks on the hard wood steps.

I could install a gate at the top of the stairs. That might be okay. I could turn off the monitor without worrying about Lily taking a spill down the stairs.

I could see if there's a sleep aid Lily could take to keep her asleep. Getting her to sleep is no big deal...KEEPING her asleep is what I need. Would dosing her with melatonin when she wakes up help? Maybe. Not sure. But melatonin has been pretty ineffective with her in the past.

I could do nothing and hope this...6 month phase passes.

I don't know.
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Help at home. I got approval from my insurance company for a home health aide for Lily. She started a week ago. I was approved at the end of January, but it's taken this long to find a resource. Now that she's started, it relieves a lot of the burden from grandparents having to drive 40 minutes one way to watch her until I can get home from work. This is an amazing benefit, and I'm slowly getting comfortable with it. Right now it still seems very new and I'm still stressed out about it, but hopefully I'll mellow out with time.

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

Lily is growing up. I won't go into the personals, but she's growing up and I have a plan, and that's basically all I guess anyone needs to know. Not that anyone NEEDS to know it, but if you were like...what the hell is Jim going to do when Lily goes through puberty...Jim has a plan.

If you don't have a plan, feel free to reach out to me. I like my plan. People that need to know stuff know stuff. And they know what to do. And I know what to do. And if you don't know what to do...you should figure that shit out sooner rather than later.

Was any/all of that cryptic enough? Anyway, if you have a little girl like Lily, and you're considering your options, I'd be happy to discuss it with you "off blog".

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

It bothers me that I'm never sure if my little dashed lines are all the same length.

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

Lily had a couple seizures at school the day before yesterday. We've long suspected seizure-like activity with Lily, but up until Tuesday nobody had ever really witnessed them who had a lot of experience. The school called me and they sent her to Children's hospital ER in a "princess carriage". I drove to meet her there.

We learned nothing. Lily had previously done a sleep-deprived EEG that was inconclusive, and we elected not to do a 24 hour EEG followed by an ambulatory EEG because, to be honest, the first one was so fucking traumatizing that I didn't want to put her through it. That was...years ago. >>HERE<<.

In fact...5 and a half years ago. So I'm doing it again. I got a script for an MRI and one for an EEG and I'll be doing it this time without Leslie's support, but Lily is in a LOT better place for this kind of thing now. She'll still have to be sedated for the MRI, which isn't my favorite, but there's is absolutely no way she'll sit still to have her brain scanned for a half hour.

So the "good" thing is someone saw it, and we checked it out and she seemed fine. And the other "good thing" is that now I can use the scripts to get a better look so that IF something is there...I can get her help for it.

this Lil patient is being so patient

I was at the ER from 1:00-7:00 on Tuesday to get those two prescriptions and that medical buy-in that she was "fine". And Lily was somewhat stir-crazy, but she was good all things considered (having not really eaten since breakfast, they wouldn't let her eat until she had bloodwork done I think that finished up around 5. So...that was a bit painful constantly telling her "just a little bit longer".

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

Recap: Lily isn't sleeping much, and is becoming a woman. In addition, she seems to have had a couple seizures at school. I need help, but got some for after school if I can just figure out a way to get more sleep. Doc says there could be a link between her seizure and her coming of age, and that could be scary, but I'm following up.

There!
Unpacked. For now.Anonymoushttp://email@example.com:blogger.com,1999:blog-6873182308469051103.post-21867873724550967692017-02-24T13:27:00.000-05:002017-02-24T13:27:13.495-05:00CheckupI went to my semi-annual dermatology appointment today. I'm moley. It turns out that moles I THINK are dangerous are harmless and those I think seem harmless are malevolent. So I go to the dermatologist and he checks me out twice a year just to be safe. They take pictures with an ipad and then compare my moles today to my moles from the past and flag the changers.

I have this mole-ish thing on my thigh. It's been there for years. He said a name for it. He said it's fine. He always says it's fine. Which...is why I go see him, because I wouldn't have thought it was fine. I told him so. He said, "it does all the things we tell you to worry about, but it's still harmless. It turns out it's genetic." Well...if it's genetic. Nothing genetic could be a problem.

"These things save lives," he continued. "People think there's a problem and they come to get them checked, and because they come in we spot something they might NOT have caught that ISN'T harmless." So basically my thigh-mole-thing is a hero.

My dermatologist told me that his brother was a pilot in Iraq. He told me that he asked him once what it was like being a pilot in Iraq and apparently his brother told him, "It was a target-rich environment." He told me the story after he peeled the paper gown away from my chest. In terms of moles, he said, "you're a target-rich environment."

Don't worry, this story ends happily. He examined and catalogued my moles and had his assistant take some pictures, pronounced me healthy and told me I could get dressed and he'd see me in 6 months.

Writer technique...FLASHBACK!

When I started this appointment they asked me if I wanted a gown or just to take my shirt off. Considering I knew he wanted to examine "all of me" I figured rather than sitting bare-ass on butcher paper I'd prefer the sparse modesty a gown could offer. The assistant brought me a paper gown and I disrobed when she left, peeling the paper apart to find the arm holes.

"The opening goes in back," she said.

I put it on and looked for some way to pull the stiff paper closed. There was a thin plastic strip, perhaps a half inch wide and 36" long that had fallen out of the gown and I attempted to wrap it around myself. I could make the ends touch but there was no way I'd be able to tie it. This was not my first paper gown exam rodeo. I looked for eyelets on the gown...maybe it threaded through them. There weren't any. I tossed the strip on my clothes in disgust.

flattering!

I gathered the gown around me and pulled it closed before sitting on the butcher paper and waiting. "Please don't use cell phones while in the examination rooms". Whatever. I didn't though.

Writer technique...PRESENT!!

I crumpled up the paper gown and tossed it in the garbage. I got dressed and grabbed the "belt strip".

I handed it to the assistant and said, "Explain yourself. I'm relatively slender and I couldn't tie it, I guarantee you have bigger patients. There is no wa-" But she was already holding the strip out in front of her...and...LIFE HACK...She pulled it apart. The strip didn't snap in half or really even seem to thin out as much as I'd have thought. She handed it back to me, stretched nearly double.

At the look on my face she laughed delightedly. "That's how you do it," she said.

I can't POSSIBLY be the only person who has failed to see the solution to the short-belt problem. If I am, please feel free to laugh at me. If not...use this life hack for your next appointment.

Jim W.http://firstname.lastname@example.com