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.

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! 

Hey girl, who needs Jenny McCarthy?

We survived another Weekend of a Thousand Hours sans papa!  Oh thank god.  Although I am now fearing we survived only to be thrown into the zombie apocalypse.  I’ve yet to gather my supplies!  Time to make my way to the Winchester, at least I have a Spotify playlist for that voyage.

This coming Thursday, it’s our first official IEP/ISP/IFSP/meeting for PX to decide on new & extra in-home services.  We’re looking at an extra 2-3 days a week of sessions focused on communication.  PX is picking up signs well, but still being stubborn about using them and needs a prompt to tell us his needs.  It’ll be nice to get some extra focused help for communication skills.  Plus we still have playgroup (yay!) and our usual generalized therapy visit and possibly a new group, a social skills group.  Maybe I should just change his name to Brick. 

My summer goal is to get PX as prepared as possible for pre-school and hopefully, diagnosis pending, he’ll be able to start a day program in the fall and get a good 8 or 9 months in before the battle for ESY.  His early childhood teacher who runs the playgroup thinks he has a good shot, as well as our caseworker, considering PX has begun to use his peers as models for behavior as well as really opening up with his sister.  He even played and shared with a new girl at group, on her very first day!  She took a shine to all of us, too, even Rizzle who has no concept of personal space and sat right in the lap of this poor gal who doesn’t exactly do well with new people and situations.  Only my kids!

So it’s been a good week for the kids.  Apparently, not such a good week on the special needs front in general; all the batshit crazy has come out to play it seems.  Bleach?  Really?!  Fucking batshit crazy, I say!  And it seems #SNRyanGosling agrees across the interwebz & at Adventures in Extreme Parenthood this week.  He even wants to dethrone Ms. McCarthy.

He gets my vote!  1-800-GOS-4ASD

Please Ryan, give us a little skin.  Please?  It IS to raise awareness after all.

It’s ok, just curl up in my lap, we’ll get through this.  ;O

A Fabricated Week #2 {the almost toddler travel pillow}

Dude.  I had a big case of the stupids this week. 

I have had PX’s travel neck pillow planned out for a month. At least.  And cut and pinned for a few weeks. I’m surprised the damn thing didn’t grow legs and walk over to the machine itself. But by 10pm last night, out of pure determination, it was machine sewn and stuffed. Success! But then it hit me, as I reach to finish it up with some hand stitching- I never actually measured the damn thing in comparison to PX’s neck. FACEPALM.

 

Obviously I wasn’t about to wake my son, an I didn’t feel like sewing it only to have to alter some stiches so, stuffing pouring out, I called it a night.  When the tots awoke this morning, it was the moment of truth.  And?

 

 

Too small.  That’ll prevent faceplanting in his car seat about as well as nothing.  BUT!  All was not lost.  Because some members of this clan don’t have skinny necks and giant domes (just giant domes).

 

 

A few stitches and Rizzle will have her own travel pillow.  Maybe this is why I had my surprise baby, so someone can always benefit from my crafting.  Even the eff ups.

PX’s 1st Self-Portraits

PX has always been fascinated with my camera so now that he’s older (and can at least understand “don’t throw that!”) I let him play around with my camera from time to time.  Typically he just likes to press the buttons and watch the world go by on the LCD screen but the other day he turned it on himself.  And snapped these.  Perhaps this is the start of a fantastical love of photography.  Or maybe he was just amused by the flash.  Either way, he captured my two favorite since birth features:  the big curious eyes and the fuzzy ears. 

Black & Orange Aren’t Just for Halloween

I’d be lying if I said I wasn’t inspired to bust out my bag of vintage DMC floss and go to town after seeing this post.  With two under two and a tight budget, we’re a hand-me-down, repurposing, thrift store & yard sale type family.  I have no qualms with this, but sometimes the clothes can be a little boring.  Like these pants we got for PX: totally perfect condition, good quality, but plain.

Maybe it’s the fact that 2T clothing is bigger and looks less “babyish” but these pants just screamed to me that they needed some attention.  So, I got crafty.

I’m really pleased with how this pair turned out.  I hadn’t picked up an embroidery needle in about 8 years!  I definitely won’t be waiting another 8 years now.

The Impromptu Nature Walk

I originally set out today with the intention of going to a carnival held at one of the parks in my town, complete with live music.  Where I ended up was on a nature walk with the kiddos that ended in some fun at the playground for PX while Rizzle napped.

 

And the winner of the craziest PJs of the night is…

my little boogie monster, PX!

A Love(l)y Update

When is it that pregnancy brain actually goes away and memory returns to normal?  I would like to be less forgetful.

The bunny went in for surgery just a night before PX was due for his last round of under 2 immunizations.  Genius, Elle.  Needless to say lovey was released from the plushie hospital the morning after a very basic removal of nearly dangling eyes.  The fact that this little cuddly bunny has NO eyes seems to only bother PX; he was too busy filling in bunny on his latest antics when they were reunited to notice the difference.  But I, on the other hand, am bothered by there only being quick stitches in place of eyes.  Hopefully all the vax backlash and current molar teething episode will be over soon so bunny may get his cosmetic reconstruction finished.

The only upside to this pause on bunny's fix up is I have been able to work on my Father's Day present turned birthday gift for Daddy Drax:  a custom hybrid mei tai.  I've been fine-tuning the overall design for a few months and after finding some perfect core fabric, I'm simply going for it.  Go big or go home I always say so we're forgoing a typical pattern and I'm working with this.  Yes, that is taped to the wall.  No, I have no idea what this table is of which you speak.  Maybe, probably, most likely I have lost my mind (see above paragraph).

Lovey Surgery

circa 4-2-11

PX latched onto his chosen lovey fairly early in life; by six months, a small pink bunny covered in flowers that had once been mine became his.  For whatever reason, it was and still is his teething toy of choice, his best friend with whom he shares pillow talk.  Well during bunny’s “bath” today I discovered that poor bunny is in need of some replacement peepers.  His eyes are attached by mere threads and unfortunately due to the initial construction his original eyes are not salvageable. 

So little bunny enters into surgery this weekend and poor PX is without his best friend for a bit.  Bedtime wasn’t as calm and peaceful as it has been lately but he is off in dreamland with his many other stuffed friends.  Bunny will be getting a full physical along with his surgery to hopefully prevent any necessary operations in the near future.  It’s been a while since I’ve stitched or embroidered anything by hand so this will be something a bit different for me.  My only worry is PX will be a little less fond of bunny once he has no plastic eyes on which he can chomp.  Let’s hope he doesn’t notice the change.

Toddler Haikus

I got this from one of the message boards I frequent, and decided to write my own.

Toss puffs all around
No food on my tray please mom!
Tastes best off the floor.

Want mama to play?
Let's play pass...oh forget it
You just run away.

Mom is wondering
About a toddler's food groups--
Bugs, puffs, dirt, ba-ba.

You're covered in poop,
Stop trying to scratch your butt!
Poop isn't a toy.