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. phoenix-1st month 001
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.
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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.


I really haven’t posted since May? {Wait, hold the phone, it’s JUNE?!}

I need to blog more.  :/

I started to write a big long post about my last two (three?) weeks of HELL and got bummed out.  June has been tough, with everyone sick and shit (literally), and I was just starting to relive all the (literal) shit.  So, the way of DELETEALLTHETHINGS it went because now I’m not craving a margarita in a Prozac-rimmed glass.  It’s just more like one or the other.

I kinda keep procrastinating in actually posting a post, I believe, because I’m hoping things will really improve.  Because wrapped up with all the sickness followed by rain followed by the Satan’s balls heatwave we’re currently experiencing, Drax (the daddy trapped on the crazy train with moi) has been to the doctor’s/hospital roughly 6 times due to his back and has been diagnosed with complete degenerative spinal stenosis with some spinal spurs in his neck to just sweeten the deal.  At 24 years old, he has the spine of a senior+ citizen (has apparently lived with this his whole life?) and surgery’s not exactly being ruled out yet.  Next week he begins his “pain relief plan” or whatever our hospital’s fancy PC phrase is for shots and therapies. 

And on top of this, we’ve started to add services for PX, up to 3 a week, and next week is his official evaluation by a developmental pediatrician.  He likes his new providers/workers/therapists but this routine disruption has brought out some behaviors.  And night waking.  Lots of LONG night waking, and playing.  Even after days filled with trips to the park, sensory activities, and therapies.  I think my kids are going to be like me, and sleep like shit till puberty hits, at which point they decide they cannot get enough snoozes. 

But, thankfully, our good moments have been MARVELOUS moments and actually got captured in pixels.

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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


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