Monday, May 28, 2018

I Need a Re-Do

We just got back from a vacation to Hawaii--just Liam, Adi, Todd and myself.  We left Matt in the hands of a very capable sitter and went off for some uncomplicated time coupled with a dental meeting.  We had all been anticipating this vacation for a long time--we "gifted" it to the kids for Christmas and they were beyond excited.  By the time the trip came round, I felt my mind and body literally aching for a break--I was thrashed and Todd felt the same way.  We needed this time.

After all of the planning and logistics were set aside, particularly related to Matt, and all my tears at leaving him behind had been shed, I fully expected myself to be able to just let go and relax--enjoy my kids for the first time in a long time because there were no schedules to fight over, no chores to debate, no responsibilities to juggle....and no Matt which brings with it its own set of complications ridden with Mamma guilt.  So I was anticipating simple, uncomplicated, love-filled family time.  We even set up a "system" to help prevent fighting--kind of a "three-strikes" system with a horrible punishment attached to it (which worked, by the way).

As we were leaving, I had a chat with Liam and Adi to "frame" what I needed from them--I told them this was intended to be a vacation for us (the parents) as well and we needed them to not be....well...needy.  We needed them to be cooperative, to listen, to not argue, and to take care of themselves a little (i.e. be responsible for your own crap).

It didn't take me long to realize that every pre-framing conversation, every attempt to create this beautiful, relaxing experience that I pictured, was completely in vain.  This vacation was destined to be something other than what I pictured in my head.  Now, here's the problem....rather than embrace what it was going to be, I was irritated beyond belief that it was not what I had envisioned.  Here is the un-edited version of how it felt.

The kids didn't fight, but they literally did not stop making noise.  If they weren't talking and wanting a response, they were singing--making up songs and singing them so loudly.  They went so far as to make the most annoying sounds they could come up with--goat noises and other animals.  I think their ears may have gone on vacation because it took them forever to get moving every day--I felt like I had to leave the room to get them to panic and follow.  I couldn't do anything without an appendage, including shower--every shower I took was with Adi.  I couldn't go potty by myself because she always wanted to be in the stall with me and wouldn't go into her own.  When we would go to bed and wake up, it was with them...which is introvert hell.  Zero time to myself.

All of this is TOTALLY NORMAL kid stuff, but I could not no feel frustrated.  The more the week progressed, the more annoyed I was.  The more annoyed I was, the less fun I was.  The less fun I was, the worse I felt.  The worse I felt, the more irritated I was with them.  Here's the irony--I would tell them this--"guys, I really want to be fun Mom, but it is so hard when I feel like you are ignoring me. Can we work on being better listeners?"  And other equally in-vain requests.  Again, very normal kids.  But when they didn't magically transform into unicorn children, I would get more and more mad at myself for not being more flexible, for not being able to let the annoying things go.  The voices in my head were getting louder and louder...."you are so selfish because all you can think about is time by yourself when you are here for family time" or "you have amazing children that are capable of amazing things who just want to have an amazing time and you are getting in the way of that" or "you are letting your kids down by not being more fun! You can't even be fun in Hawaii!  That's pathetic" or "you are going to regret not just treasuring this time.  Why can't you live in the moment and let go a little?" or "what kind not a horrible human being gets upset with their children for not meeting expectations that are unrealistic because I want to have more peace and quiet?" or "your husband is not going to enjoy being with you at all if you keep being this crusty, lame human being."  Those voices were SO LOUD that I literally could not even think straight, much less enjoy myself.

Fortunately, there were days that were better than others, but I honestly felt a little depressed most of the time.  It was hard to be loving toward any member of my family, including my husband that I started to resent because he was so capable of being everything I wanted to--fun, relaxed, exciting, full of energy, playing, loving, and fully enjoying himself.  When he went to his dental meetings, I stepped it up a little so the kids weren't forced to wallow with me in self-pity and martyrdom at least. Here's the beauty though--they forgave me every time I apologized and still wanted me and my attention even when I was crusty five seconds before.  They continued to be oblivious to this internal turmoil and had a wonderful time. They won't remember for a second the moments where I sucked as a Mom and rather came home thanking us over and over for such an amazing trip.

So I went on a run this morning and purposefully didn't take music or a book to listen to.  I just thought.  And while thinking, realized something I did wrong.  I listened to the voices.  I would entertain them, agree with them, nod in response to their biting commentary and let them become statements about my worth.  And then I would look to my kids to validate me, asking them to fix their behavior because that was where the problem was...or at least if I could think that, it would somehow justify my selfishness and lameness. Rather, what I needed to do was replace those thoughts.  Just like you can't will a habit to change (you have to replace it with a new behavior), you can't will thoughts out of your have to replace them with new ones.  It was almost like I needed to take those thoughts out, stare at them a little, examine them for credibility, change where I needed to and replace the thought all together with a new, better thought that motivated me to change verses wallow in self-pity.  For example, the "I'm selfish because all I can think about is time to myself" thought could have been replaced by a kinder "you are exhausted because you work very hard.  It is totally appropriate to ask how we could possibly carve out some time so that you can rejuvenate during this trip as well."  Or the thought about letting my kids down because I'm not more fun could be replaced with thoughts of what I do well.  I don't naturally do "fun" well and compare myself to Todd and other Mom's who are so good at it.  And when I DO play with them and AM fun, give myself credit!  Rejoice in the moment that was fun!  Or the thoughts about being a horrible human being for wanting peace and quiet could be changed to "kids will be kids!" rather than a commentary about my horribleness.

Once I realized this, I spent the rest of the run doing what I do best--planning.  I plan to do better at being nice to myself in my mind.  I can still envision the Mom that I want to be and one of the adjectives used to describe her IS fun....but rather than comparing myself and focusing on the gap (how far I am from that person), I will focus on the progress (how I'm getting closer to becoming her).  Rather than focusing on what I am not doing well (and where I literally feel like I am failing), I need to focus on what I am doing well and give myself credit for the victories. Because I am naturally a positive person, some of these feelings are really foreign to me--these voices aren't usually so loud!  I think listening to them gives them power.  But just like light and darkness cannot co-exist, the voices cannot stick around if you replace them, in a very intentional way and after looking at them for a moment, with the truth.  Those voices lie sometimes.  We have to look at them closely enough to decide what element of truth exists in them so that we are working at becoming better, but then we need to kick them to the curb and replace them with what we KNOW we are and what we are capable of.

Wednesday, November 15, 2017

Big Miracles

Most of the posts that I write are about Matthew and his progress.  This one will be slightly different because it is about the progress my other two are making that represents a different kind of miracle--but one of those I couldn't have planned for, wouldn't have known to ask for, and cannot take credit for.

I believe that children come to this earth with unique gifts.  Liam is sensitive and spiritually just in tune--he is blessed with a desire to be good and obedient.  Matt represents happy--his handsome face, his enthusiasm for the things he is passionate about (lately, when he likes a song, he kick-stomps a single foot, as hard as humanly possible, and smiles so big you feel like his face is going to explode), and "happy" is his most frequent response to the question, "how are you Matt?"  Adi is a source of joy to everyone she comes in contact with (unless you are her age and on the receiving end of her stubborn, bossy-ness).  She tests me, but when that girl wants to please and be full of light, there is no light brighter.

Well, one of the special gifts that comes from having a family with an extra-special is the surprise miracle that I'm starting to catch glimpses of.  Liam and Adi want to help Matt.  They are learning how to love him in their own, unique ways.  They are starting to develop relationships with him that are independent of my encouraging.  Matt is starting to seek them out and respond to them in a way that teaches me about both him and them.  It's beautiful to watch.

This became so obvious to me over this last weekend.  We took a trip to our happy place (Sunriver) and immediately headed up to the mountain.  Todd was determined to get the entire family on snow shoes.  I rolled my eyes a little bit because I was certain there was no way this was going to work, but his enthusiasm was contagious and I found myself secretly hoping that, by some miracle, we might actually find our winter family activity--something we have been struggling to discover.  So we pack all of our snow gear, 5 pair of snow shoes, the dog and our optimism into the van and head to a beautiful trail on Mt. Bachelor.  First sign we pass says no dogs....we choose to completely disregard this sign (or at least pretended not to see it) because we were not about to give up after all of the effort we had already gone through to get there.  It is no small feat for any family to time potty trips and packing up that much gear, so to arrive and turn around because of a stupid no-dog sign seemed weak--like giving up.  Forget it.

So Izzy ran around int he snow in the empty parking lot, happy as can be, while we saddled (shoed) everyone up.  Within about two minutes of starting this process, we realized our timing would, again, have to be impeccable.  The instant Matt's snow shoes were on, I needed to be ready to take off with him or he would lose it.  So I got ready quickly and the instant he was rearing to go, we started to walk--so quickly he didn't have the time to notice there were giant tennis rackets attached to his feet.  He just started to follow.  I was AMAZED.  We made it to....well....the trail head.  He started to notice that a) he wasn't very fond of his flippers, and b) it was cold.  So he started to freak out a little and flops his body into the wet snow.  Let me explain something about Matt's "flop."  He is 75 pounds of slippery fish capable of escaping the tightest of mother-vice grips as I attempt to pick him up by armpits, by anything I can get a moment's grip on.  He was not to be picked up.  The battle had started.

Todd catches up to us as we have made it approximately 7 feet from the trail head.  He finds Liam on his knees because he tripped, Matt sprawled in snow-angel position, and Adi sitting down eating the snow.  There I am, in the middle of everyone, dancing and singing (in forced-happy-Mom--cheerleader-voice) songs of encouragement in an attempt to probe my brood into motion.  I found that if I walked away from Matt a little, he would wail and moan louder...and then suddenly pull himself to standing and start to walk a little.  This would last for about 7 steps (we counted--I was offering bribes for every 20 steps) before slippery fish face would flop once again onto his ice cold pillow of puffy snow.

This process repeated itself (insert several instances of Todd and I physically picking Matt up and carrying him for a few steps while he dragged inverted snow shoes, pulling him to his feet by grabbing clothing items attached to parts of his body that he couldn't wrestle out of our grip) until we finally made it a grand total of....wait for it....200 yards.  GO TEAM!  When we got to the end, we took photos, did a dance of joy, and then pointed at the parking lot with encouraging words and promises of iPads and music when we made it back to the car.

Apparently all of these bribes fell on completely deaf ears and about four steps into the return trip, Matt flops face first into the snow with a wail of protest.  He is LOUD.  I can hear the echo and am pretty positive the entire mountain can too as his volume has progressively crescendoed to a rather disturbing level.  We decide to attempt our "walk ahead a few steps and see if he'll stand up" strategy, but this time, Matt is just laying there, pathetically, and the wailing does not subside.  It is clear he is miserable.

Liam is the first to speak up: "I can't stand this.  I'm going to back to help."  Adi immediately falls in step with him and, before Todd or I can move a muscle, they are traipsing back to help their helpless brother.  Given that neither of us,  in all of our brute strength, could get Matt to stand upon request, we thought this would provide a little comic relief, if nothing else.  But what we witnessed was far from comical.

Our two beautiful children stood on either side of their frustrated brother and in calm, soothing voices, spoke encouraging, loving words to him.  They offered him a hand and he looked up at them with total trust, took their hands, stood, and started to walk resolutely towards us with his brother and sister flanking him.  The three of them, hand in hand, all wearing massive smiles at their victory marched through the snow in their snow shoes and I thought my heart would burst.

At that moment I realized that we were seeing a miracle in our family--that my children are becoming the types of human beings that I have prayed they will become, but that I knew I could not somehow turn them into, in spite of my best efforts to do so.  What is happening to them is because of Matt--not us.  They are becoming sensitive in a way that makes me feel overwhelmed with gratitude.  For some reason, this experience helped me to see that so clearly, so I stood there in the snow, beaming and crying, watching my three crazies that were driving me insane moments before and feeling inspired by their goodness.

Of course, I tried to get it on video.  It's short, but you get the idea.

Wednesday, July 12, 2017

Just Showing Up

I learned a really important lesson this morning and something about myself that I'm not super proud of.  I have a friend that is going through a really difficult time--the difficulty of her current situation is the direct result of the decisions of others that are completely outside of her control.  The only thing she has control of is her reaction to it and she is handling this trial with dignity and grace, staying true to who she is a completely devoted to the things that are most important to her.

She has really needed support, and to someone who is accustomed to playing the support role, I imagine that is a difficult place to be in.  Well, today was a day where I knew she could have used support....and I wanted to give it.  I planned to offer it.  Logistics started to get in the way, but rather than keep my mouth shut and muddy through the logistics, I mentioned that I was "trying to work things out" and would "do my best" but I wasn't positive that I could.  Her response was, of course, "oh Julie!  Don't even worry about it!  It's no big deal!"  So I kind of let myself off the hook, comforted by the though that "she knows I tried."

Well, I woke up this morning, the day of this medium-significant event, and I felt this nagging in my heart.  I had made other plans for this morning and could not shake the feeling that I needed to change everything.  So I started to....I texted friends to ask if they could help me with the juggle a little bit, asked the sitter to show up early so I could leave early, and in the process, exchanged texts with a friend saying that I was going to come.  We went back and forth with her reassuring me it was not a big deal and me assuring her it was OK and I got things worked out.

I got dressed, put on makeup, curled my hair....and when I texted to say I was coming, I was told not to worry about it.  I started to get insecure, wondering if I wasn't wanted.  It was at that point that my sister sent me a text that gave me the perspective that I needed and taught me a pretty important lesson.  She said "these are the moments when you JUST SHOW UP."  You do not ask a struggling friend how important it is to them that you be there--do not put the burden of decision on them.  If you feel like you should, then DO.  Don't wonder, question, vacillate, over-talk, analyze, think....DO.

At this point, I was super irritated with myself.  I was that friend that annoys me--when they commit to or talk about doing something that isn't convenient and you can tell, but then they keep telling you its important to them and they wish it would work.  Well, if something is important to you, you show that by doing it.  You give your time to what is most important to you.  Talking about it does not prove it is a priority--doing something about it does.

I was annoying myself with all of my back-and-forth about this....I felt like a crazy person because I KNEW (felt) what I needed to do and my desire to do the right thing was at odds with my desire not to burden others and to take care of my kids and....blah blah.  So it wasn't like I was being a slacker.  But I got kicked upside the head by the Spirit (that is that "feeling" I'm describing) that I needed to show up today.  So I ignored the "don't worry about it" comments and I'm sitting on the stairs outside of the courthouse right now, waiting to give my friend a hug, feeling embarrassed by my psyho-ness but grateful for the prompting to JUST SHOW UP.

As I reflected on the drive, I realized that I am a great friend when people come to me.  I can listen, counsel, process, think through things, and offer help.  But I often find myself allowing things to come to me and waiting for things to be clear to me before taking any action.  I use the excuse in my head that my life is "different" and sometimes hard...that there are a lot of balls in the air...that things are complicated.  There is something so beautiful about the person who just shows up, vulnerable, unsure what they will even offer, just because they love you and want you to know you are important enough to them to be there and risk that vulnerability that they might not even be wanted in that moment.  I have had those showed up with flowers on my porch as I was going through a particularly hard who texted without any clue why she felt like she should text me and feeling kind of dumb because she didn't even know what to who showed up on my porch when I had an infant and drove Liam to preschool--and then kept showing up to do that against my (feeble) protests....

I admire those people. And yet, because I hate to be vulnerable (except when I write, apparently) and because I struggle to find time for everything that needs to happen in 24 hours a day, I neglect to give the greatest gift a friend can by just showing up.

Embarrassment is a great motivator.  Because I'm so horrified with myself today, its easy to want to commit to do better.  But I genuinely feel grateful for my ignorance today because it caused me to really think about this and to recognize a blind spot.  We've all got 'em.  But as I sit here, not sure if I'll be embraced or eye-rolled when my friend walks out (vulnerable), I'm still glad I decided to SHOW UP today....for my sake, if nothing else.

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.

Wednesday, April 26, 2017

Was Blind, but Now I See

This picture describes how I feel right now.

Matt is in a really (emphasis on the really) hard phase right now.  It hasn't been a very long phase, but it has been an emotionally taxing and frustrating experience this last week or so to "love" Matt.  I always love him, but to show him love is like ramming your face into a net.  There are little parts of you that get through--sometimes he'll kiss or love those parts.  Other times he'll scratch the crap out of the skin he can access.  Either way, I feel like I'm hitting a big, fat, ugly barrier when I try to help, serve, and love my son.  But at least we are both standing at the net.

Since starting Matt on epilepsy meds, he has made incredible progress--verbally he exploded.  His awareness of the world around him has improved.  His receptive language has made a huge leap.  His desire to interact has increased.  Unfortunately, in spite of all of that progress, Matt has suddenly become incredibly frustrated and increasingly anxious.  We are on a mission to figure out why, but I feel like I'm, again, hitting the net.  Detective work is SO HARD when the person who holds all of the information lacks the ability to share it.  

Matt's explosion of language has made him realize that he CAN his desire to interact and the intensity of his interactions has gone up.  He has a Rolodex of words that are familiar and, when he gets amped up and anxious, he scrolls through those words over and over.  If you don't respond, he gets closer and closer to you--literally in your face--and shouts them at you.  When you respond and give him attention, he is lost as to what to do to carry on the joint attention.  If you ignore him, the intensity increases.  We go through this cycle hundreds of times a day. 

Matt notices more and more things, but then that gives him more and more things to impulsively grab at, hit, throw, bang, or slam closed.  His receptive language has increased so he is able to follow instructions better.  He is also able to understand parts of conversations and whenever you are attempting to have a conversation with someone other than him, he will yell, scream, scratch and otherwise attempt to interrupt to the point where you literally feel like you have to hide in the bathroom to chat.  Todd and I pretty much wait until he is in bed to talk. 

Matt wants my attention so badly (and unfortunately, this is moving past me to others as well) that he will grab (translate scratch) your face to get you to look him in the eye.  When you attempt to ignore him because, lets face it, reinforcing face grabbing probably isn't the right thing to do, he will start scratching you other places.  His favorite on me is up my shirt.  He got the teacher in the chest the other day.  He has drawn blood on both of his tutors in therapy.  And, for the first time, he went all "cat" (as opposed to "ape") on Todd last night and attacked him with his cat-like ninja-fast killer nails.  

So in a house with three children wanting your attention and one who demands it more loudly than the others, you can imagine what the noise level, intensity level, anxiety level, and all-round mood feels like.  Its super fun. 

On Sunday at church, Matt let out a blood-curdling scream in the middle of the sacrament....that is after cycling through his usual "get me out of here" phrases, like POOP!!! The scream was disruptive enough to earn him an exit which reinforced what he wanted.  We tried a few other times to sit in church, but Matt was having none of it.  When I went to take him into Primary where he was supposed to be sharing a scripture that day, I simply told them there was NO WAY he was going to do that and in response, Matt scratched me across the face.  I was so fed up that I burst into tears in front of several shocked people and made my not-graceful exit into the hallway where I ran into a few more people that I was embarrassed to have see me in my overflowing state.  Once composure is lost, regaining it with any sense of security is a little challenging.  When we got home, for example, Todd suggested I take a break, not even really knowing what was going on.  Again, I burst into tears at the sensitivity of my good husband and made my way up to bed where I spent an hour in the fetal position with kids interrupting every few minutes because, let's face it, in a house full of littles, there are never any real breaks.  

On Monday, things were horrible--I think that was blood-drawing day in therapy. I was great during the day (oh yeah....he was at school and therapy), but after he had been home for just a short while, I felt like all I could do is numbly go through the motions of being a Mom.  By Tuesday, things were explosive, but I had an appointment with a doctor that day which was comforting.  If the goal was to let him see what Matt is really like at home right now, he gave him an Oscar-worthy performance for which, this once, I was really grateful for.  He prescribed meds and we are, once again, trying to drug the crazy out of our child.  If you are sensing a lack of confidence in this strategy, you are sensing correctly.  When your cupboard is overflowing with meds you have tried and failed with, you start to lose confidence...can't imagine why. 

Now, here's the bright light.  Tuesday morning I taught a religion class--we are studying the New Testament in John and one of the stories is the story of the blind man.  In that story, Christ heals a man that was blind since birth and the Pharisees question whether his disability was caused by the sin of him or his parents.  Christ refutes that theory and then goes on to explain the reason: "that the works of God should be made manifest in him."  Here's the beauty of this whole thing.  In the throws of this really crappy stuff, I have to know that there is purpose--that somehow, someway, this is going to help me, help our family, and help Matt.  Maybe it is as simple as the idea that we will appreciate just how much better he is doing because of the really crummy days that we have to compare it to.  Or maybe it is more complicated but equally powerful--something about what we are supposed to learn or a quality that we are supposed to develop.  Like, I don't know.....PATIENCE!  ENDURANCE!  LONG-SUFFERING!  I suck at all of those things, so that would not surprise me.

Even more beautiful than the learnings (because that, to me, comes pretty naturally--I love to learn and am always trying to figure out what I'm supposed to get out of something.  It is my thing.  I love it), in this case, is what it is doing for the greater good--how the works of God are being made manifest.  Let me explain....

One of the quotes I read as I was studying for this class said that adversities will be "consecrated for our gain."  When something is consecrated, it is made sacred. Our adversities can/will become sacred to us and serve the purpose of helping us to gain--improve, grow, learn, etc.  And the second part of the quote said that those same adversities will then "bless the lives of countless others."  That part to me is beautiful--that the difficult things we go through will become sacred to us and then used to bless others.  Kind of makes it feel like it is worth it.  Ironically, this lesson was taught in conjunction with the healing of a blind man.  His sight was physically restored, but the greater miracle happens in the verses that follow--he comes to know who Christ is.  That happens a little more gradually--a little more step-by-painful-step as he endures questioning and is cast out of the synagogue (the source of his social and spiritual life).  But his confidence gradually builds. Then Christ comes back to him and tells him very clearly who He is at which point this man's spiritual eyes are opened.

I think that the point of our adversities (and this is a big one--not Matt himself, but the behavior phase) is because they open our eyes.  We are able to see things in a different way after going through something hard.  We have more compassion for others, tolerance for differences, offer the benefit of the doubt more often.  We can look around us and see suffering that might have otherwise gone unnoticed which gives us the opportunity to offer relief.  I truly believe that our struggles become sacred to us because the open our eyes--they allow us to see things differently and in a way that enables us to be instruments in the hands of God to lift and "bless countless others."  Through that process, we come to know Christ.

Let me get specific here with Matt.  I do believe that through this precious boy, the works of God are being made manifest.  He inspires people to be kind, to overlook shortcomings.  He pulls love out of you by heaping it onto you.  He makes people feel wanted when he walks up to them and, after trying to steal their phone, takes there hand and says "shake!" or something else, indicating that he wants them to come and hang out with him.  He shows joy like no other person I have ever met--its like it bursts out of his body and he dances to express it.  If God embodies love, acceptance, tolerance, patience, kindness, and purity of heart, the works of God are being made manifest through my son.  My responsibility is to take the trials that go along with it and allow my eyes to be opened through it--both in a way that helps me to know Christ and in a way that helps me to "see" others. This is no easy task.  It is tempting to retreat inward when I am struggling--to hibernate or wallow. I'm not great at reaching out when I feel overwhelmed like this.  But I am trying.  I want to have this journey with Matt be a sacred one. I want to be an instrument in the hands of God to bless lives.  Enduring these phases...enduring them part of that journey. In ease, we are not given the gift of growth--it is in the painful day-to-day experiences that tax our energy, strain our mental capacities, and spiritually bring us to our knees that make us who we need to be.  Well.....I'm certainly in the throws of that.  Bring on the growth.

Today, however, I'm less ambitious.  Today I'm just going to work on not being grumpy about all of this.  

Sunday, February 5, 2017

A Smile Goes a Mile

Yesterday, I decided to run a couple of errands with Matt and Adi in tow...a combo I don't often venture out with.  Matt was literally bouncing all over the place, yelling "DANCE!" and "HAPPY!" in the car as we drove to the pharmacy and then Wal-Mart for a return.

We arrive at Wal-Mart and Matt has peed everywhere while sitting in the carseat.  We've potty trained him recently and that was the first accident he had in 2.5 weeks.  So celebrate the victory, but pee in a 5 point harness car seat requires an engineering degree for disassembly to wash.  Didn't feel much like celebrating that part....or the accident itself.  But sometimes you just do whatever needs to be done, so we walked into Wal-Mart, pee-stained pants and all, figuring it was the last place I actually needed to be overly concerned about people examining his clothing too closely.

We landed in a relatively short Customer Service line (blessing) behind an old neighbor friend I knew growing up.  While we chatted, Matt began to grow increasingly anxious and was getting louder and louder as he yelled "phone!" or "pad!" (meaning iPad...not Maxi, lest anyone be confused).  He would try to grab my face when I didn't immediately look at him or became too distracted in conversation.  While we continued to chat and wait, I would periodically take Matt's hands and apply pressure while having him count slowly to 10--one of the few strategies that works to calm him.  After doing that 1/2 a dozen times, it no longer had the intended effect and Matt was starting to lose it.  About 20 minutes had passed and the dude in front of the one and only service rep was still talking to her.  I decided I should just leave, but the lady in front of me suggested he seemed to be wrapping up and my friend told me to go ahead of him.  About 3 more minutes and we were at the front of the line.  Matt is fully charged and LOUD at this point, but I manage to tell the girl that I had a return, here's the cc I used to purchase, I don't have a receipt, happy to take a store credit.  Thinking this will be an efficient experience, I was all smiles in spite of the devil child leeched to my side at this point.

She informed me in a not-nice voice that they only accept returns for store credit up to a certain amount.  When I asked what that amount was, she said she can't share that information with me.  Huh???  Well, apparently my $50.50 (approx) of merchandise exceeded that amount because she turned me down.  I asked if she would at least take one of the items back and she said no, she couldn't.  The girl next to her piped in and in a bossy tone (grrrr) said it was part of the same return and therefore they could not take just part.  I asked why and she couldn't really explain, except to restate the policy.  I asked if I had brought it in a separate bag by itself if they could, and she said yes, but I had brought them in together.  I took the one part and put it back into the bag and said that they were separate, but they said they couldn't.  I asked if it was because it still exceeded the amount and she refused to tell me.  This illogical circle drew to an exasperated halt only because the manger walked up and asked if I knew when I had purchased it--which I did.  I gave him approximate dates (couldn't take out my phone to look at the calendar) and my card which he took and attempted to look up.  Matt is FREAKING OUT at this point and literally clawing and screaming at me.  I asked the girl why she hadn't offered to do that in the first place and miss bossy pants beside her said she wasn't allowed to.

At this point, I'm really irritated, but still totally keeping my composure with Mr. Matt and trying my darnedest to calm him while not feeling super calm inside because I'm so irritated by this illogical policy and the people who continue to quote it to me with little to no empathy for how hard this return is or how it made no sense.  A woman walks up to me at this point, taps me on the shoulder and says, "you are a wonderful mom!"  A second lady who just got to the front of the line said, "yes, you are.  You are doing a great job with your son."  I thanked them...and then burst into tears.  I took Matt's face to distract me and continued to talk to him, tears running down my face.

Bossy pants offered to give Matt a sticker...I think she started to feel bad for me at this point.  I told her thank you for offering, but he wouldn't be interested.  She insisted she had seen it work with other kids and I declined politely again.  Persistent bossy pants tried again to tell me that it might work--her son is sometimes like this (Matt thinks stickers are not even worth acknowledging as an object and I had already informed her he has special needs) and as I open my mouth, another lady says to her, "I think she knows what will work for her son better than you do!"  I almost giggled.

We ended up giving up eventually because dude took an additional 15 minutes to try to find our transaction.  I told them I was torturing my son and needed to go.  He said if he had the exact date, he could find it.  I told him I couldn't take out my phone to look because Matt would hit a whole new level of freak out.  He, in the nicest voice humanly possible, told me to come back and find him and he would do everything he could to help me.

I turned around to leave and there was a huge line of people behind me.  All of them had been waiting for quite some time.  I braced myself for the scowls and judgmental faces that I have encountered so many times in the past when going public places with Matt.  What I got was literally the opposite.  Not one person in that line avoided eye contact and every person with whom I made eye contact smiled at me.  I felt absolutely overwhelmed by compassion and love as I left.  I got to my car and started a new round of tears because of the showering of kindness through that experience.

Now, I realize that this might not sound like it was any huge deal, but to me, it was.  The reason I was so touched it because it did a lot to prove to me that my faith in humanity is not misplaced.  I like to think that people are good, that they have good intentions, and that most conflict is the result of misunderstanding or a lack of listening.  I know that most people, if they truly learned the art of empathy, would respond with kindness.  Most of us have a natural tendency, however, to make up stories in our head about those we come in contact with.  I think it makes us more comfortable to fabricate in our minds a world that makes sense--when we don't have all the answers, we create them.  Problem is that we aren't always right.  But because we do that (and our perception becomes our reality), we don't seek to understand as much as we should.  When we DO, though, most of us are naturally kind and compassionate.  In my little experience, the story was obvious--Matt very obviously had special needs where at other times (or if you don't watch very closely), people have perceived him to be a loud, ill-behaved child of a negligent mother.  In this instance, people watched more closely and therefore understood more and, as a result, responded with a little bit of love.

Every one of us has been there--when people avoid our eyes, we assume judgement.  When people scowl, we take it personally (even though some people just have RBF).  We can all do a better job at choosing to, in the littlest of ways, show kindness.  The little things are the big things to the person on the receiving end who is struggling.  A smile goes a mile :-) I'm so grateful that SO MANY PEOPLE did that yesterday.