Thursday, June 8, 2017

It Comes in Waves

I like to think of myself as a realistic optimist--I try to always look for the best in a situation and believe in the power of hope in realizing dreams.  I also am not oblivious to the fact that a dose of reality plays a very important role in determining where to place your hope--that you have to hope for things that are somewhat realistic so that you aren't constantly being let down by unmet expectations. But hope is powerful.

I also like oblivion...sometimes it is really nice not to talk about something for awhile or not to ask questions where you might not like the answers.  Its almost like it disappears for a minute and you are able to pretend it doesn't exist.  Totally dysfunctional coping mechanism that we all employ on occasion for the sake of survival.

When Matt was first diagnosed with autism, I grieved.  I grieved the death of hopes and dreams--a reality for him that I had painted in my mind at his birth.  I mourned...and then I (we) picked up the pieces of that shattered dream and built a new dream that is equally bright and beautiful, but looks very different. Since then, we have started to realize the severity of his disabilities and added to autism a list of struggles.  But I love our reality.  I love the gift that Matt's disabilities represent in our life because of the people we are evolving into as a result and the focus and purpose that it gives to our family--we are almost forced to focus on what matters most.  We are literally incapable of coping with the frivolous because we are so consumed by the reality.  There is no energy left.  But we call it our gift.

However, every once in awhile, the grief comes again and washes over me like a giant tsunami wave--it retreats, I'm hanging out in oblivion for a bit, and then FLOODED....knocked over by what I thought had already passed.  I thought I had accepted our new dream--embraced it.  But my last dose of reality hit me pretty hard and, while I know I'll overlay a little optimism on it and feel better very soon, the tears are my current companion.

Matt's behaviors of late have sucked.  They have not improved.  This is a long, horrible, bloody (literally--my hands have taken a beating) phase that I keep wishing was over, keep praying to find the lesson in, and daily have to petition heaven for patience that is beyond my own ability to muster up.  I am not the only one effected by this--our kids are, Todd is, teachers, paras, therapists, tutors, BCBA's, sitters, doctors--the village.  As a result of the length of this phase (because his entire village shares this pain), we initiated a Functional Behavior Analysis at school with the psychologist taking the lead on evaluating what the function of his behaviors might be so that we can make sure we are addressing them appropriately.  At the conclusion, I was given a write up/summary of his findings which I received a couple of days ago and then I met with him to discuss his findings and ask any questions.  Emotion hits you at weird times--this should not have prompted an extreme emotional reaction, but for some reason, I could feel it all welling up.  This kind, well-intentioned man almost had a woman in a heap at his feet sobbing her eyes out, which I'm confident would have thrown him for a mighty loop from which I'm not sure he would have recovered.  So my goal was to keep it together until the car.

It wasn't that he told me things I didn't's that he brought me out of oblivion and gave me a healthy dose of reality that I didn't want.  Part of this analysis talked about Matt's current level of function being that of an 18 month old.  Absolutely true, but to think that, several years ago, he was at that of a 9-12 month old, that is a seriously slow, painful trajectory that doesn't bode well for him, even if he lives well into his 90's.  He also talked prognosis which NO ONE--not one practitioner or professional--has ever dared to do.  His statement was that Matt will probably always need adult supervision to help him complete basic life functions (i.e. self-care) and keep him safe and secure.  Nice how I can't even write it without bawling....because that is not what I want.  I want more for him.

There are events in our lives that remind me just how hard this life is going to be for us and for him and the selfish part of me wants to picture more for both of us.  This is one of those events.  Not sure why....I just feel really, really sad.

Matt now has a BIP (Behavior Intervention Plan) which will be incorporated into his IEP.  I feel like he is on probation, but it is not that at all.  I just feel so sad that he requires one.  Matt has historically had the reputation of being a love bug and most of his outbursts and avoidance strategies were almost charming--he'd hug you to get out of a tasks or throw himself across your lap and play exhausted. But now he cries and says "sad, cry" when he is frustrated, pulls hair, bites, drops to the floor, runs away, screams, scratches, and lashes out.  I feel afraid that he is becoming harder to love and love was the big thing we had going for us.  I know for a FACT that his village would tell me I'm crazy to entertain that thought, but this boy that I cherish--that my whole heart and soul is invested in and that I love with a mamma love I didn't know was possible--is a struggle even for me on days.  I love him and am oh so endeared to that sweet child of mine, but it is hard to like someone who hurts you over and over.  The love of his "village" has never been anything but can't help but fall in love with Matt....but if he keeps hurting them, I worry about the toll it will take on those relationships.  I cherish Matt's village.  Words cannot express the gift they represent in my life.  I just don't want them to have to endure a struggle--I want them to feel they can't help but fall in love with him.

I have to remind myself that it is OK to be sad--sad is not weak.  I'm not an ungrateful person because I'm feeling a little bit sorry for myself for minute or grieving for Matt because his life isn't ideal.  I just can't hang out here for too long or I miss the opportunity for growth that difficult experiences provide.  Hanging out in oblivion on purpose is like dodging progress. Anyway, I  know that this tsunami of sad too shall pass. I know that I will feel better after a good cry (or twelve).  And I know that God loves Matt and didn't send him here to suffer and be constantly frustrated.  He sent him here to have joy and to be a source of light and a teacher of all of the most important things that will influence the lives of those around him in a way that leaves them better.  I just have to piece things back together again and come up with a new masterpiece in my mind, incorporating every reality, and then clinging to precious hope.

Friday, June 2, 2017


Sabotage is defined as underhand interference with work.  Deliberate destruction, disruption or damage. I think that the root of it refers back to labor disputes and there is a story about disgruntled workers throwing their shoes into machinery to "disrupt" production or "destroy" property.  Appropriate choice of words for how I feel about Matt's behaviors right now.  This will be a whine-post vs. a lesson-learned-post.  Not there yet.

I had an out-of-body experience this morning where I almost could watch myself mid-chaos being completely sabotaged on every front as I attempted to help Matt get ready for the day.  I go to unzip his tent--he leans against it so that I can't get the zipper undone.  I grab his clothes--he runs into my bedroom with his poopy-butt jimmies (as in literally leaking through the material of his PJ's) and sits on my bed.  We walk into the bathroom together--he plops himself on the floor and refuses to stand up.  Finally stands in front of the toilet and attempts to get his hand down the front of his pull-up, but HA!  I caught him.  Point for me.

This next part is not for the faint of stomach.  Gloved and ready, I strip off his poop-drenched footie jimmies and begin wiping his back and scooping (no exaggeration) the poop off of his leg.  Remember that song we used to sing as kids about diarrhea?  It's real.  Running down his leg like a wild scrambled egg. This entire time, he is trying to grab his poop-covered penis and I'm holding his two hands with my one.  He succeeds (point for Matt) and proceeds to rub the poop between his fingers until I can regain my single-handed grasp on his now-brown hands.  He then grabs my watch and starts trying to press all of the buttons.  My one hand loses the slight grip I have on his two while my other hand is wiping him as fast as humanly possible.  I toss wipes into the garbage bag and hit the handle (all I can think is that when I go to tie the bag, I better still have my gloves on because there is now poop where I need to touch).  When I lose the grip, he yells "scratch" and does just that to my hands and arms.  Readjusting, I finally accomplish the task and get him mostly cleaned off at which point he proceeds to pee on my foot.  I don't even wipe it off....I just leave it there.  The poop is the priority--if I attempt to wipe it off, he might step in his affectionately-labeled BM'd PJ's.  So I let the pee dry on my foot.  I'm so grossed out at myself right now.

We are finally cleaned up and I toss him in the tub--he turns the water off.  I turn it back on and start to lysol the floor where he peed.  I then turn to my next, more daunting project--the BM'd PJ's which I start scooping feces from and tossing them, once again, into the garbage.  As I do that, Matt is yelling at me and I keep glancing in the tub to make sure he hasn't pooped again--he likes to do that.  Insult to injury.  He does not....but he keeps turning the water off, getting mad that its off, turning it back on to scalding-burning-piping hot (well, our limited scald--we have a "max temp" set for this very reason, but much too hot for him to tolerate), getting mad that it's hot, but cannot--will not--try to turn it off himself.  Just screams for me to do it.  I turn it off....he turns it on to scald.  I turn it to the right temp....he turns it off.  Seriously.  This charade continues the entire time I'm cleaning  and rinsing his jammies.  I run to throw them in the washing machine finally--he turns on the hot water again.  I want to scream at this point.

Time to get out of the tub.  NOPE.  He refuses.  Will not stand up.  Slippery fish just sits there.  All water is drained and he is naked, smiling at me and laughing (deliberate part of this sabotage exercise is becoming increasingly obvious).  He finally gets out of the tub and we dry him off.  I forgot underwear and when run to his room to get it, he strips off the towel and runs after me, naked, dripping.  We finally get dressed without too much incident and head downstairs.

At breakfast, I go to cook--he stands in my way--like literally goes to the exact spot where I need to stand to flip French toast.  We go to eat--he finishes before everyone else is dished up and is yelling at me for more and jabbing his fork at me.

Time to get ready for school.  I take him to the bathroom and he immediately drops to the ground.  Limp.  Totally.  No armpit-poking (my usual strategy) is working to prod him off the ground.  Just sprawled out on the bathroom floor.  I run through my possible options--kick him (bad choice), try again (vain choice), wait him out (best choice).  So I do.  I stand there and wait him out while that cute face smeared with French toast remnants stares up at me, half-laughing.  FINALLY, he peels himself off the floor and stands in front of the toilet.  If I stand in front of him, he lunges for me and pees on my foot again, so I stand behind him.  He grabs my arms and wraps them around him and immediately starts scratching me furiously.  He leans against me, tips his head up, smiles and says, "scratch."  Ya think?  Seriously....the language is a gift, but labeling your own bad behavior just makes it hurt more.  He then starts to butt-thrust me--jams his naked butt into my legs in an attempt to throw me off balance.  It works, but I quickly recover.  He then starts to scream--acoustics are great for that in the bathroom.  After cycling through a series of about 15 more behaviors, he finally pees, pulls up his pants, and goes to wash his hands.  While washing, he grabs for his tablet (iPad died several days ago and a part of me has died with it because he is throwing all of his frustration over losing his best friend at me), knocks the soap into the garbage, sprays water all over the mirror, toothbrush lands in the dog dish, and I roll my eyes.

Oh yeah....I forgot to include the fact that I have two other children who both wanted my attention during 50% of these activities.  They walked out the door and after the bathroom debacle, Matt all of a sudden didn't need to compete for attention and turned into a little angel.  He put his tablet away, grabbed his book and backpack and we sat on the porch and read until the bus came, which he promptly boarded with joy and enthusiasm and I waved at with equal joy and enthusiasm.

Some mornings are just like this.  Sabotage is an ATTEMPT to thwart--not always a successful one.  His attempts may have injured my pride and my patience a little, but they have not succeeded in shutting down the factory.  Onward and upward.