First Communion---Super Happy Day!!!

After a whole year of waiting and studying and practicing and waiting some more; after sitting around for 20 WHOLE minutes in the chapel, wearing shoes that hurt and a suit that was so huge that even the seamstress at the tux shop had trouble getting all of it tucked under and pressed, and after lots and lots and lots of people telling him HOW TO ACT RIGHT....

da Creature has finally gotten to take COMMUNION with the Church.  He tried so hard to be calm, but around the sermon things began to be a bit dicey...he was hot, his feet hurt, it was boring, he wanted a drink of water, he decided he'd "just get a blessing" (which we don't do anyway, and was one of those da Creature departure from reality moments) but things did settle down again once he got back from taking Communion for the first time and he could ditch the suit coat.

My favorite moment was, of course, the important one, but the most memorable will always be the one that happened right before we took this picture in front of the C.O.U.S. (Crucifix of Unusual Size)....

Notice where the feet of the giant Jesus are relative to the height of da Creature.  He bent over, stuck his face on the giant feet, kissed them and said:

"I'm gonna smell the feet of Jesus now."
  
Never a dull moment.

Not a single one.

Life with my funny, furry blur of a creature is so incredibly special, and I love him SO VERY MUCH.  Congratulations, my little angel...we made it to one of the big milestones and you were splendid.  Just splendid.  Even when you're bent over smelling Jesus's feet.   :)

Here's a very short slideshow with the highlights of the day:

Discouraged

Regression at times is inevitable.

It's a discouraging thing.

da Creature is going backwards right now in every single way imaginable.  I don't seem to be able to stop the movement into chaos and darkness at the moment.  I feel broken and sad.  I can't imagine how out of control he feels.

Here's hoping it's a transition to better things, not a spiral into worse ones.  We won't know for a good long while.  He is keeping whatever is bothering him really close and not sharing at all with me.

Things that have returned, seemingly all of a sudden:

• not being able to go to sleep (it's been two years since this was even an issue)
• toe walking all the time
• being "weepy" and out of proportion emotionally
• aggression at school
• despair
• dis-cooperation (my term for his general unwillingness to participate in good things, seeking rather to pursue the negative ones just because he feels like it---not oppositional, not attention-seeking, just a descent into "let's make the worse choice possible and see how that goes.")
• the nose picking 'til it bleeds and finger tip peeling have ramped up in the past two weeks

I was so hopeful a few weeks ago, and now I am so incredibly discouraged.  I know my life and well-being do not rest on how he is coping and how he is doing, but my ability to have a life and pursue a few rare mommy interests does because now I have to hover and wait and worry and interact with the school in ways I do not trust and hate with a passion.

Time will heal.  Summer will heal.  In the meantime, off-roading with the creature on this emo detour from Hell is getting a little tiresome. 

Oh, and his IEP meeting is May 1.  Goodie. 

 

Our old enemy: The Different

I am on a quest to desensitize da Creature to da DIFFERENT.

 "How's that workin' for 'ya, da mama?"

Yeah.  About as well as one would expect. The Different is definitely the enemy, and we have had one of the hardest years so far with him as The Different eclipsed us and his beloved sister left for college.

The picture here is iconic for me---him, desperately clinging to her, her getting ready to fly away into her happy beginnings.  Sadly for da Creature there is an equally HUGE Different looming on the horizon which he doesn't know about yet.  We are still learning to manage all the little ones, but this one is bigger than all the ones before and so, I must, in the mean time, help him practice managing the storm of emotions that flood him every time something happens that is even the slightest bit:

• not expected
• not the same
• the same plus extra
• exciting
• disappointing
• tragic
• unwanted
• time consuming
• uncontrollable
• dangerous

"Practice?  What do you mean PRACTICE?  How do you practice uncontrollable and dangerous (and all those other things) and WHY ON EARTH would you want to?"

Because he will never, ever, ever learn how to function in the face of The Different unless I lead him there, teach him what reactions are, help him see the pattern of reactions he has (which are often violent, loud, embarrassing, and vicious) and then one by one, slowly, over time, have them occur often enough not to overwhelm and shut him down but cause him to reflect on the last disaster, use our plan for the next, then modify what he tries.  The trial and error on this one is brutal because he lacks insight into his own emotions, and the ability to use expressive language to talk through reactions.  He's also got terrible impulse control so stopping him BEFORE he physically reacts to The Different is quite the parenting gauntlet.

"Won't this just make him anxious and fearful all the time?  Don't kids NEED structure and stability to be psychologically healthy?"

At what point did we define stability in terms of control?  How effective are we at controlling everything necessary to keep up with our child's sensory issues?  How long can we keep that up?   It's awful.  On the one hand, you want to protect your child and your life, and your sense of safety and well-being, and you project that as a NEED onto your child's life, like he really needs all of this controlled environment just to get through the day, but what I've observed within myself  is that what I'm actually doing is self-protective.

You see, the more of The Different I can banish, the quieter and more predictable our life is.  Quiet seems better, because noisy and fist-pounding scary is, well, scary.  But worse, it's embarrassing, like I didn't raise him right and can't discipline him.

So there are a some things I have to get used to before we can practice The Different in all its ugly glory---

• he is going to react
• people are going to notice
• people are going to judge
• people are going to share their parenting advice
• I will not be able to prevent his reactions
• I will not be able to explain his reactions every time

But---and here's the big reason behind the need to practice---There is peace and quiet after, and remorse on his part.  It's frightening to feel so out of control.  His need to control is as great as mine, and teaching ourselves to walk through The Different without allowing the reactions to dominate our life is a magnificent skill that can only be learned through repetition, reflection, and tweaked repetition.

So, my advice?  Get thee out there and take it all as it comes.  Let him react.  Let it be as awful as it's gonna be.  Love him ferociously anyway.  Don't take crap off of the other parents.  Don't let him see you flush with shame.  Let him know he is going to be OKAY, and this is a procedure, not a rule.  Procedures we practice until we get them right.  Rules we discipline and correct.

Improperly managing sensory overload is NOT a character flaw.  Hitting mommy with your book in a grocery store probably is, so he gets three shots at self-control.  He gets just three times he can hit mommy with a book before we declare it a character flaw and make not hitting mommy with books a rule.  Hopefully, if all goes well, he'll hit mommy with a book the first time, then next time he'll smush a banana in mommy's general direction, and finally, if all goes well, he'll look at me and bark that it's loud and shiny and he HATES it.  To which I'll reply....good job, let's keep tweaking.

Someday, he'll go in a grocery store and know it's loud and shiny and he hates it and connect having to internally and privately manage those feelings and his need to react to them with the concept that without grocery stores you don't get food and clothes and betta fish.  Someday, the payoff for being there (wherever The Different lurks)  is better than the pain of having to ignore so very much.  Someday, he'll work it out.

That's NEVER gonna happen if I leave him at home while I run errands or go to the grocery while he's at school to avoid having to take him with me.  Never.

We can do this.  We can beat The Different down until there isn't a Different we don't know what to do with.  The good news?  The payoffs are tremendous.  The bad news?  It's gonna suck for a very long time.  I hid in my house for a couple of years while we were learning how to deal with sensory issues.  I've had to force us back out there.  It's hard, but I'm really glad we're toughing it out.  Someday you'll drive by our house and there'll be a dead dragon in the front yard with a plaque which reads "The Last Resting Place of The Different."

The Triduum Tales

Photo by S. Rutherford, taken during the Chrism Mass on Tuesday, April 3rd

 

Our beautiful Cathedral was the backdrop for da Creature's FIRST EVER attempt at Triduum-ing.  That means he needed to function for FOUR major Masses/Services over a four day period.  He made 2 and a half, which would have been impossible last year, so I count it as blessing that he managed what he did.

Thusday was Holy Thursday, and there are three separate sets of things he had to be quiet and still for.  This coupled with him being SO excited that he HAD to sit in the VERY FRONT of the rows of, inconveniently for a sensory kid, the temporary chairs you'd find at an outdoor wedding.  Let's pause for a moment to survey the scene...

• brand new space
• temporary chairs that are rickety and have **GASP**  tied on seat cushions
• wobbly, balanced-impaired AND sensory-impaired fidget monster
•  lots of new and different things going on at Mass
• Organ silence after the Gloria (PRAISE GOD someone remembers!!!!) which meant a capella music only and LOTS of uncomfortable silence
• little old ladies all around me
• the lady who was part of the foot washing group left her purse and sunglasses on the seat next to da Creature 

He did really well for a while.  Then he didn't.  I knew we were going to have to go to the back of the church and the glaring little old ladies made it clear we needed to go SOONER rather than later, but he was trying SO hard and he had already communicated (vehemently) that he felt like going to the back would be a failure, so he was fighting and grousing, but I had to do it, we HAD to move, so, during the Sanctus (Mass XVIII btw... **smile**) we headed down the aisle...

So...pretend you're not me for a second and just watch this play out

• he's really, red-faced mad
• stomping
• being dragged by his mother down the side aisle of a quiet Cathedral during the a capella Sanctus
• he's SHOUT-SINGING in Latin and STOMPING where the angel's footsteps normally lift the pulse in chant

Go ahead, you can laugh...it was a little funny from a helicopter, but not so much for da Mama.  After Mass, a friend came up to me and said with a smile, "Boy, he sure does know his Latin, huh?"

Yeah, I guess he does.

On Good Friday, he used his finger and followed along, pointing ever single word of the Gospel (the ENTIRE Passion of Our Lord Jesus Christ) line by line, because we have to "help" Mommy see the tiny little words (okay, I'm evil, but it gives him SOMETHING to do with himself during readings, and this was a very very very long one).  He managed this, mind you, while standing on the vent which was under HIS chair, and which was blowing freezing air and making the satin bookmarks on his Missal flap in the breeze.  After the Gospel, he actually said "Mommy, I feel overwhelmed" and I was able to beat a retreat to the foyer for a while.  GO da CREATURE!!! WAY TO USE WORDS!!!

Then we went down for veneration of the cross, and he struggled to get on his knees on the floor, and I had to haul him back up like a giant unconscious tuna, but that was okay...he got to do it, and that was what really mattered.

For the rest of Mass, we went up to the choir loft and I let him play angry birds in the library alcove, which should have been a dream, except...  see.... he listens.... to everything.... everything.  Apparently on Thursday when they sang "There is a Balm in Gilead" (blech) he had memorized it.  Here's my liturgical music rule...if my autistic son can memorize a song on one hearing at church, it was TOO simple for adults to be singing.  Unfortunately, the song re-appeared on Friday, while he was playing angry birds.  Wow.  His little voice carries really well, even when he's in a back room facing the back wall.  I leapt from my chair in the choir stalls, and creaked across the floor noisily a little late to stop him from screaming the refrain happily at the very tippy top of his little lungs.  Oh good grief.

So, in the end, it was wonderful.  Easter morning brought more computer time for him, as I had to conduct for the 8:00 AM Mass, but he got to spend it with Daddy, which made him happy.  We went home, I made some form of meat and potatoes, and he got to go find eggs in the backyard and eat some candy.  Easter now means a little more than getting dressed up and being told not to shout-sing the Alleluia.  Now it means getting dressed up and being told not to shout-sing the Sanctus on Holy Thursday OR shout-sing There is a Balm in Gilead, well, ever.  But, he has new experiences of what it means to be Catholic in his repertoire of things he KNOWS.  Now that's PROGRESS.

Happy Easter Season to ALL!

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.  :)