Halloween 2012

I really didn't think Halloween was going to happen for us.  Sandy was supposed to make the 31st nasty here, rain and wind and blah.  And as soon as the forecast called for more favorable weather, other stations started crying rain showers all night, on and off, trick-or-treat at your own risk!

But we HAD to get out of the house.  Cabin fever had set in pretty severely, and Rae had started up on her television 24/7 kick.  Apart from the health aspect, if I heard "LA-LA-LA Elmo's world!" one more time, I was going to LA LA LA myself to the funny farm.  Plus, the kids had costumes and even Scooby Doo Halloween buckets from the last McDonald's trip with grandma.

So at 4:00, when the sun started peeking out between the clouds for longer than 15 seconds, I decided we were making it happen.  Talking it over with the daddy, we planned on McDonald's for dinner, a little walk through downtown, and hitting a few houses closer to home.  We were on our way by not even 5pm.

I had a moment and forgot McDonald's on Halloween evening would be a zoo.  But walking up with a fry-gobbling dinosaur in the front of the double stroller meant no matter what there was no turning back, unless we wanted a soul-crushing meltdown fiasco on our hands.  We had to forgo any high chair or booster for PX, and I held my breath when we had him take a seat in the booth.

But he sat.  On his butt.  The entire time.  Better than 90% of the other kids in the place.  And never once crawled underneath the table.  He just sat, well-manner, eating french fries and watching car after car pour into the driveway.  He didn't even beg for sips of Sprite.

We gave him some fries for the transition and began our stroll.  For the first few stops, neither knew what was going on.  Rae played coy with the firefighters but looked a little WTF at the small objects being placed in her bucket.  PX just ate his fries and tuned out the candy exchanges.

It was the second to last stop when it happened.  Outside one of the semi-assisted living complexes some residents had set up a table, with the motherload of candy bowls (ya know, huge and full of the good stuff).  As we stopped, Rae gave everyone her sweetest smile and they told us to pick out some candy while we chatted.  I grabbed some Reese's for PX and tossed them into his bucket.  The orange packages caught his eye.  HOLD UP?!

He tilted the bucket, touched the peanut butter cups, and then gently pointed to one to ask for permission to munch.   I couldn't help but oblige.

It wasn't that long ago, not even six months ago,  that he would've skipped asking and just gnawed on the package.  He probably would've thrown a fit when it didn't open.  It was only 4 or 5 months ago that we let him sit in the booth with daddy at McDonald's only to have him throw his smoothie on the floor under the table to protest the "sit on your bottom" rule and then proceed to play in it.  He has honestly come so far.

Our Halloween was perfect in its way.  It was short, and simple, and ended with PX cuddling his daddy whilst watching Charlie Brown.  I couldn't have asked for more.

Not Unlike a Confession

When I was eight years old, I got my first journal. It was this brightly-colored Lisa Frank diary THAT LOCKED. And it was the coolest thing on the face of the earth, to me the third-grader. Boy craziness took me over early in life so I filled the pages with musings on all my crushes, written in pretty pink gel pen; nothing else would do.

That was eighteen years ago and I don't think I've ever been without a journal. Whether it was online or on paper, I was always rambling to someone or no one about everything. I'm certain I remember going through about two notebooks a year during the peak of my puberty days. So, over the past few months, it's troubled me that I haven't blogged, or even really journaled. Anywhere.

It's not that I don't have anything to say or am too tired to say it; I find myself composing in my head almost daily, moments highlighted with "I should blog this". But I don't, and I've been perplexed as to why. I've tried pretending I'm writing to a specific audience (hi guys!) or writing to no one (go away!) or some imaginary space alien studying the human race (yeah, we totes cray cray!!!). Alas, it's all been to no avail.

Then, my best friend came to visit this month for a few days. PX tolerated the change in his routine surprisingly well, and it seems he now believes every visitor to be solely for him and the pursuit of fun play therapy. It honestly shocked the hell out of me a little bit, but in a good way. About midway through her visit, after coming home from a day out, I saw an opened letter from the speech therapy office on my desk. "That came today," said the daddy. I picked it up and brought it with me while I sorted out tubby time. I breezed through the first few pages, the summary of the history I provided for PX, and began to read his assessment based on the observation a few weeks ago.

It's been a while since I've gotten any evaluation for PX. The last one was his autism diagnosis. The diagnosis was expected, and his overall assessment & place on the spectrum was a lot better than I'd thought; the psychologist evaluated him at moderate, hovering close to the mild-moderate line. So I wasn't prepared for what I saw in terms of his speech. Six to nine month range...skills around 12 months...below six month range. He's 2 1/2 years old, and his skills are being compared to that of an infant. Every conceivable emotion ran through my body in about 10 seconds, and I felt completely gutted.

It wasn't till about 5 hours later, while trying to shut my brain off and get some sleep before round one of wake-ups, when I realized the root of my problem. Guilt. On top of more guilt. This guilt squared has been coming between me and my ability to write.

My overwhelming emotion while reading his evaluation was guilt. I may have been sad and pissed off but more than anything, I felt guilty for his rankings. I've felt guilty in other moments, too, when he can't tell me what he wants for lunch or shuts down when we can't understand his attempts at speech. It was like I'd drank a guilty martini of what didn't I do back then, what am I not doing now, what wrong crap have I done since the start.

And it doesn't take long for me to start feeling guilty about all my guilt. My whole life has been surrounded by special needs; daughter of a special education teacher, sister a brother with PDD, heck even one of my first boyfriends was an Aspie. If anyone should know better about not being to blame for autism and all its quirks, it's me. I'm supposed to have a handle on this; I lucked out and got thrown into the autism world with at least a little experience and some references. So I've got no reason to feel misplaced/undeserved/whatever guilt. And I'm actually a bit ashamed to admit I do feel this way, but I need to just... stop.

I'm a human being in a family full of human beings. I've always been a bit of an emotional being at that, and it's OK. Feeling guilty about feelings is just a vicious cycle that gets in the way of so much and doesn't contribute positively in any way.

I need to remember every day I'm not responsible for PX's speech and communication challenges, but I am responsible for helping him work towards hearing his voice. I cannot let any part of me or my subconscious dwell in guilt over the fact he has almost no verbal skills at this time. It's alright to feel my feels, blog about my feels, get them off my chest, but then it's time to move forward.

He's already on the run, anyway. I better keep pace.

So, it’s been a summer.

I very much unintentionally took an entire summer off from blogging.  That’s kind of a long fucking time.  But I suppose, in some way, it’s what I needed I guess.  Or it’s just the ultimate example of my crappy time management skills.  But I digress.

So we had a summer, a long short summer of learning. 

We learned PX's preferred learning style, which is no nonsense & involves lots of PECS.  We learned that both kids are basically living examples of "If you give a mouse a cookie..." in terms of learning and discipline.  "Alright, you can have your snack on the couch."  *two minutes later*  "ARE YOU TRYING TO PLAY HASEL AND GRETEL?!  This must be the start of the rebellion."
We learned Rizzle probably has a muppet & puppet fetish, BUT the amount of sign language and basic words she's picking up from all her furry favorites give it a plus side.  I kind of figured her love of Elmo and Jason Segel would eventually boil over.  Time to introduce Miss Piggy!

I learned I can never have too many calendars.  NEVER.  And Post-Its and white boards.  Notes, yo, they (kinda) work.
I learned that at some point PX will probably be paying me for the pleasure of doing the dishes.  This day honestly cannot come soon enough, as dishes are the bane of my existence.  That, and laundry.
We learned, to even the kids' surprise, they are duck whisperers.  Yes, duck.  I'm surprised we were able to leave the zoo without a few stashing themselves away in the stroller. 

I can't explain why that's invaluable, but it just friggen is.  I'll explain more at another time, because it's just too much for this.
But now summer is over.  We've moved into a new, bigger place and it's time to settle in to our routines and get back to normal.  Well, our normal.

And the winner is… autism! [a post-evaluation post]

PX’s evaluation actually went well.  He seemed to enjoy spending three hours doing his happy-flappy dance for an audience, and obsessively lining up toy cars and animals for inspection.  Somehow, he managed to only have mini meltdowns that could be deescalated by simple redirection.   I’m not exactly sure how he managed this for the entire session, but I’m proud.
It was a completely different experience from his initial evaluation to see if he (and Little Miss) would qualify for Early Intervention services.  Four months ago, he scored considerably lower than I expected because he wouldn’t do ANY task asked, when asked.  He’d do them later, when he thought no one would notice, but that didn’t count.  He had his first huge meltdown, full of face-slapping, by the end and my heart was broken.  Truthfully it was then that I let go of denial and accepted that PX was without a doubt somewhere on the spectrum.
This time, he did the tasks asked when asked with only minimal resistance.  He stacked his blocks and put pegs in holes and rolled a ball and even responded to his name a couple of times.  And then when done, he’d go back to toe-hopping and skipping, flapping his hands from head to toe, squeeing his trademark “eeeee!  yaaahhh!!!!” the entire time.  It opened my eyes to how far he’s come with just a small amount of therapy. 
But I still blinked back a couple of tears when they said he indeed has “autistic disorder”.  I suppose somewhere inside I was still holding onto a thread of hope they’d look at me and say “He’s fine, just quirky” and PX would chime in “LOLOLOL mom, fooled you!  I can speak full sentences!”  Even though I’ve known, at least since the start of the year, the truth. 
We won’t have the full report for a few weeks but he has been put on the spectrum.  So in the next month or so, we’ll be changing up his services again.  I wish there were more center-based options around here before this kid goes stir-crazy.

We make-a the same face! 

A Pre-Evaluation Reflection

Well, tomorrow’s the big day.  The big show.  Our diagnosis day.  I’ve been waiting on this evaluation for just over 4 months, since it became obvious at PX’s initial developmental testing that I could no longer deny the A word.
It’s a bit ironic that I tried to shake off the idea of PX being somewhere on the spectrum, considering my entire pregnancy that was my biggest worry. 
At 20 weeks we went for genetic counseling as part of prep for a level II ultrasound.  Ugh, genetic counseling.  The phrase seemed so off-putting, like I‘d suddenly jumped ahead a millennia and was living in Gattica.   “Make my baby STRONG!  No defects, please.  I want a world class athlete with the brains to stomp Jobs and Gates into the ground.”  We were referred because of the other half’s congenital heart defect but the first question out of my mouth was “My half-brother is autistic, what’s my son’s chance?”
“Half?  On what side?  How old?”
“My dad’s son, he’s ten years younger.”
They both just smiled at the time and tried to assure me the probability was only raised a fraction of a percent, perhaps there was a 2% chance of PX being autistic.  Even with dad having aortic stenosis, our children’s risk factor was still under 5%. 
“Don’t worry, it’s all minimal.”
At the time I secretly wanted to jump up and scream “Then why THE FUCK did we have to drive AN HOUR and make me puke on the side of the FUCKING highway for this in-depth ultrasound if there’s not even a 5% chance of my baby having a heart defect that you might not EVEN FUCKING catch on an ultrasound?”  But I kept my mouth shut, because I am a worrier, I put no faith in any low-ball risk, and I wanted a cute picture.  Our other pictures were small and fuzzy.  I got a DVD here- score!
I didn’t mention my worries again, to anyone, my entire pregnancy.  Even when, at 34 weeks, my totally healthy pregnancy nose-dived into a small chaos.  I’d begun rapidly gaining weight while PX was not.  In one week, I gained nearly 10 pounds and PX’s weight was holding steady at an estimated 5lbs 8oz.  “Small for Gestational Age” was written on every conceivable form.  I was at my OB’s office or the maternity wing of the hospital nearly daily, as my blood pressure began to rise.  So at 38 weeks, enough was enough and labor was medically induced.
Twenty-seven hours later, narrowly avoiding an emergency c-section, out came my St. Patrick’s Day little boy.
Officially, he was just 2oz over being underweight, which caused about a 50/50 split of “he might hit his milestones a little later” and “he’ll be just fine!”  And he was just fine, or what seemed to be fine.  He hit all his milestones on time or early.  So all my worries just sort of fizzled away, and I got lost in my little ball of energy and my 2nd pregnancy.  He was, and still is, my little sidekick.


So when did it happen? 
Did it JUST happen, or was it always there?  Hiding quietly under the surface, masquerading as random quirks?
I didn’t notice anything drastically different from other children until he turned 13 months; he had some texture aversions but I was always reassured that was normal.  Could it really just come out of thin air?  Was there any link between my third trimester problems, his growth reduction?  Will it matter if I ever know?
I should probably be packing to get ready for the big day tomorrow but my mind is a little all over the place.  I worry too much, and stress too often.  But I guess that’s parenthood.