Tuesday, August 28, 2018


Feeling 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.
Grab backback
Open door, and hold hands down the driveway.
Talk to bus driver about drop off.
Wave goodbye.
Watch the bus driveway.

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.