First Communion is Coming

It has been a while since I posted Mass is a Nightmare, and I felt like, as we approach First Communion, that I needed to update how solutions-searching is going for us.

We tried every single church in town.  da Creature's OT had the most clarity of everyone I talked to about this and so I began listening in the spaces.  My beloved home church (the one I WORK at, btw) has an 11 second reverb (and this after sound engineers went in and put up 10 foot sound tile panels in the back, cutting the reverb by a whole 3 seconds).  What happens to da Creature in that space is that he is hearing every single sound  simultaneously.  Every note of the organ, bounced off brick walls for 11 seconds overlapping every other note, not to mention choir, congregation, sound system, et al.

Noise cancelling headphones were not powerful enough to make it stop hurting him.

The other churches had variations on that theme, until we went to the 8:00 AM Mass at the newly built St. Francis.  I had long heard rumors that when they built St. Francis, something BAD had happened to the acoustics in there, and when I walked in, sure as God made little green apples, the space is dead as a doornail.  Just dead.  Sound rises from the organ, goes about fifteen feet and drops like a stone onto the floor.  It's like being in a sound booth.

What was bad for music at St. Francis, though, was a miracle for da Creature.  For the first time in his life, he was able to begin being a normal pain in the butt at Mass.  What a relief.  So, four years after I'd have like to be teaching him to be still and quiet, I finally have had a real shot at the game.  It's been a struggle, but it has not been the nightmare it was.

So, we often go to two churches a weekend.  One, for me to be the Choir Director, and one for my family to go to Mass.  It's annoying, but less so than da Creature beating his head on the pew and clawing at me and saying the worst thing imaginable all in an effort to get OUT of the space.  I feel so badly that I tried to discipline him for two years before realizing it wasn't behavior, it was pain.  :(

First Communion is coming.  He is SO excited.  We have a plan to avoid some of the high-stim activities preceeding Mass so we can have a nice focused experience, and I am on the hunt for a seersucker suit.  What a difference the geographic cure has made for our family.

Oh, and if you see us at Mass next to you, da Creature is the one with his very own missal, reading every word....so, just a reminder if you're a priest....say the black, do the red, or you may have a loudly shouted correction from the peanut gallery.  I will blush and apologize, of course, but you brought it on yourself.  :)

I'm-a Gonna Say Something UNPOPULAR

Tomorrow, the good folks at the SPD Bloggers Network will publish a post by me which may be met with some backlash, and I am worried a little bit about being graceful under scorn.  I won't spoil the surprise, but suffice it to say that it addresses my take on the whole medicate/don't medicate debate (which is apparently not that often debated I've noticed, just accepted as a de facto protocol).

Nevertheless, last night at Taekwondo, I sat in the parent pen musing about why the main instructor, who is otherwise a very good teacher, is terrible at dealing with my son, and it hit me...this man feels successful at teaching the "autistic" because all the autistic kids he deals with are drugged into submission, and therefore much easier to avoid and ignore.  Mine, however, is au naturale.

Ooops, did I give it away?

I must admit the ones on meds are not as distracting as da Creature, but I would like to note that they are no better at Taekwondo than mine is.  So, if Herr Instructor is so good with autistic kids and all his autistic students equally suck at Taekwondo SKILLS, it stands to be reasoned that what he is actually good at is shoveling children through the machine he has created, not necessarily teaching them to do Taekwondo. and he prefers that they go through the machine quietly.

Going quietly remains one of those life skills da Creature is currently struggling with.  There was, though, one priceless moment in his struggle with silence at Taekwondo....  One day, at the end of a one hour class, Herr Instructor had them gathered around him like usual, and was pontificating (as he is want to do) about how they should do this or that and my au naturale darling did not filter his thoughts like everyone else and said in a voice loud enough to hear in the parent pen outside the room... "WILL YOU JUST GET ON WITH IT?"

I'll take all those parents chuckling and nodding as affirmation that sometimes it's satisfying to hear out loud what you are thinking yourself (but would never say or allow your child to say) blasted at full volume at the very person you'd like to say it to.

Needless to say, Herr Instructor was not amused.

So, see you tomorrow on the SPD Bloggers Network, and let's all talk about this.  I have my reasons, as you'll see, and you might not yet have considered some of what I have to say.

Sproing, Ka-boom

Disruption. 

The uncontrolled and chaotic decay of machinery and wooden windows all had to happen here in our house simultaneously.  Nevermind that it's expensive, let's just focus right now on what REALLY matters... da Creature didn't like it, not one little bit.

We couldn't park in the garage. We had to walk through the yard in squishy wet muddy rainy guck.  da Creature was not so happy about these things.  Then, on cue...the long awaited replacement of windows snuck up on us, and though a VERY happy change, it was still change.

From the first disconcerting moments of "walk-through" living room, to all ten windows' worth of non-functioning mini-blinds going into the trash, it was so much for my little guy to take in.  When he came in and wandered through the house, there were gasps and then the inevitable backlash of "WHY DID YOU DO THAT MOMMY?"  I guess if you've never considered the possibility that windows are not just a permanent backdrop for your life, but can be removed, discarded, ripped apart and replaced, you find yourself at an existential crossroads....what else is not permanent???!? 

So, we have been through the rabbit hole and back.  While we were there, we got out of the house some, especially while the garage door took a week and a half to be repaired.  One of the places we went was the Petrified Forest in Flora.  da Creature liked da froggy--

While out and about, I got a shot of my favorite tree in FULL bloom.  It's a Granny Greybeard, and they are disappearing, at least around here.  They make me SO happy in the spring.  This one graces the front lawn of First Baptist Church and it is a delight. 

Enjoy your Spring, and remember, that when things are at their most DISRUPTED, 

change isn't so bad when there are flowers involved.  :)

St. Patrick's Day Parading

Sensory kid did better than da Mama at this one.  It was hot, loud, and we were standing the whole hour or so we stayed and da Mama just wanted to not be in the hot loud ouch anymore, but da Creature and da Sister had a BLAST.

Here's the skinny:

"Flying" Kites in Fickle Winds

Did 'ya know there's a learning curve for KITES?  Ugh.  And trust me on this, if you've not gone out and tried to fly a kite in variable (and I mean, gusty/none sort of variable wind) you haven't had the fun that you are meant to have with your Asperger pre-engineer know-it-all child...

So, as my daughter is running around the field faithfully following my first set of instructions (just pull about twenty feet of line out, set the kite on the ground and RUN, maybe into the wind?  Maybe NOT into the wind?  No, try it that way, wait...lateral to the wind?), while I, at some point, vaguely recall a long talk with my father AGES (dark ages) ago, wherein he explained in excruciating detail the equation for how long the tail of a kite had to be for it to fly....

Wait, there's a TAIL?

Yep.  And we had not unrolled either one, on either kite.

So...da Creature is getting impatient, agitated, vampirically opposed to the "sunlight" (it's a cloudy day, btw), and we are not getting anywhere.

Then the wind dies.

The strategically placed American flag on the pole in the field is NOT helping matters, as the know-it-all starts to wail every time it droops and declares the whole endeavor a bitter failure and retreats to the far side of the football field while I yell for him to get back to his sister...

Finally, one good strong breeze and the two are aloft!  Both of them, side by side, her with the big red Angry Bird kite and him with the little red Angry Bird kite, and me able to finally take the picture that would not imprint him with an indelible memory of failure, but might persuade him to believe that we succeeded.  It's all in the marketing, after all...and we had

FLOWN KITES in FICKLE WIND.

Victory. 

Spring is Here?

da Sister and I wrote words to one of her primer piano pieces long ago in the way back when, and the phrase "Spring is Here!" was the beginning of the song and a Spring does not roll around where I do not call it to mind...

"Spring is here, the flowers are all blooming,
outside there's a quite refreshing air.
Spring is here, the bunnies are all bouncing,
happy people, laughing, playing, EVERYWHERE."

da Creature is best in bright blue, bright green, yellow flavored windy world.  Today, it is grey and dull and the leaves that never fell from the trees linger and droop and drip, and he skulked off to school for his "Spring break party" with a sad shuffle and moan.  I felt sorry for him.  Truly I did.  But...them's the break's, kid.  We don't get pretty bright blue days without a few rainy clunkers in between, and I'm so very sorry I offended you by making it rain on your party day.

His delusions about my power and influence are quite the ego rush, eh?  *smile*

Spring Break is a mixed bag of things, like the party today being moved indoors because of grey dismal cold rain, and  more importanly, like the impending arrival of da Sister, who da Creature idolizes, and who will be here for exactly 10 days straight, and then will leave again and go back to college.

Sometimes I wonder if I'll survive his sorrow at losing her.  It would have been so much easier to make a clean break, have her only come home in the summers, but she would have been miserable (and so would I) and frankly, SO WOULD HE.  Yet, still, we cycle through this weekly... "YAYAYAYAY!! da Sister is home!!!!!" followed 48 hours later by "MAD SAD STOMP POUT REBEL REFUSE TO BE REASONABLE because da Sister has gone back to da College".


It is like today...there is the promise of fun, bright, breezy, happy, golden play in the sun, but instead you wake up and it's grey and drizzmal, and sad because you didn't get what you wanted.

He'll never see what I see.  He'll never forgive life for being such a disappointment sometimes.  How do I help him not see each experience as a unit measure of his happiness, but as part of a continuum of things?  How will I ever get him to decompartmentalize his emotions and NOT freak out (happy or sad) at every life moment?  How can I help him ride the waves?   I don't know yet.

All I know for sure on this rainy day is that I am glad it's Spring Break and I am glad she's coming home, and I am grateful that we get the 10 days.

A girl can dream, right?

OT room at school? Well-supplied?  With the child being taught to self-regulate by requesting really well-applied sensory breaks with the proper equipment? A girl can dream...

Excellent post on SPD Network GO READ CLICK HERE

So, what is the impediment to having a straight-up, legit OT room?  Probably funding.  Why is there a funding issue?  Beats the heck out of me.  It only took me about $700-$800 to fully equip my living room with OT equipment, so you'd think in a school that probably spends that in xeroxing each week, they'd be able to help out the Special Ed dept. and get them the things they need, but so far, equipment and a dedicated therapy room are just sort of "on the list" of things we'd all like.

How can we imitate THIS?

I'm no good at lobbying or getting political, but you'd think in a world where so many children are being impacted by the ravages of SPD, and the benefits to be had by incorporating GOOD OT into the daily life of school, well, one would think it would be a priority.  I pity the teachers who are trying their best to work with our SPD kids and never have the benefit of calm, collected, focused kids because the sensory needs can't be adequately addressed.  *sigh*

The kids in the above post have it really really good.  Lucky for them, dreaming still for mine.   Someday.

The Park of FUN and DOOM

They built this amazing new park near us.  It has a lot of interesting things to do, but the moment we set foot in it, I knew it held untold dangers for da Creature.  I had intended to post this right after we went for the first time, but the pictures were on my phone, and well, it has taken several months for me to feel like making my phone talk to my computer to retrieve them.

But Saturday, da Creature and da Sister went to da Park as a reward for several consecutive good days of doing ALL our work, and she noticed that this slide (the one I had most worried about, ironically) was awash with caution tape and blocked off.  So, my question is...who thought this was a good idea to begin with, in this day of lawsuits and CYA, this seems like an extraordinary risk for a recreational facility to take.  Honestly, I thought it was really nifty, but probably doomed, even for the NT crowd.   But, nonetheless, the park has been a blast for da Creature and I am grateful they made it for our community.

Pics from right after it opened in November---

Sensory Friendly Costuming

So, sewing was OUT of the question, to continue the story from Wednesday, but in my former life before I became da Mama to da Creature, I did a fair amount of costume design, so making a Lorax wasn't really a problem, except....

His sensory nuttiness.  A mustache? Out of the question.  Eyebrows? Glued on? Out of the question.  Wear an orange bag, ties drawn in at his thighs? Out of the question.

What to do then?  Make a mustache on a stick, and eyebrows on a head band.  Make his "orange bag" body out of a pillow case, and have it all removable, discardable, breakable, and rippable.

The mustache and eyebrows are a deconstructed flower from Walmart.  The rest is just the pillow case and an orange t-shirt.  The insufferable know-it-all character was provided by da Creature.  Type casting, much?  *laugh track now*