Sabotaged

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.

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 communicate....so 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 well....is 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.  

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.

Adult Temper Tantrums

I feel an absolute sense of disdain for the ranting of everyone on their political platform called facebook.  And yet, I can't seem to keep my mouth (fingers) shut because of some of the things that I am observing that strike me as incredibly hypocritical and revealing about people's reaction to the state of affairs in our country.

I feel like a large part of our population is throwing a giant temper tantrum.  Yes, you did not get your way.  But you are a grown up and all of the cussing and bad, disrespectful behavior in the world is not going to make your parents change their mind because they are GOOD parents.  This country's founding fathers (parents) created a system of government that cannot and should not be violated because you throw a big ol' fit.

Now, that being said, I'm learning a lot about leadership and about our individual responsibility to take responsibility for our responses in reading and reflection I have done since the election.  Here are a few of the things that I have learned:

"Between stimulus and response there is a space.  In that space lies our power and freedom to choose our response.  In those responses lie our growth and our happiness."

First, Victor Frankl was right--the space between stimulus and response is a POWERFUL space.  It defines us.  It stretches us.  It needs to be exercised, like a muscle, in order to grow.  In those responses, we have the opportunity to create happiness for ourselves.  If we are miserable, we have chosen misery--our circumstances do not MAKE us miserable.  We still have a choice.  If we choose happiness in spite of our circumstances, that is character-building.  These are our defining moments. They are difficult and they stretch us because we feel SO passionately about things, but the principle that we can choose our response does not have exclusions....like when its emotional or we feel passionately about something.  The opposite in fact--that is when it applies the most and is the most profound.  I guarantee you that this quote was prompted/inspired by, arguably, the most horrific circumstances imaginable as Victor Frankl came to this realization after being imprisoned in the death camps of Nazi Germany.  I dare anyone to debate that our circumstances right now are worse.

I'm embarrassed for those that will look back at the news and see their face in a crowd of protestors throwing a temper tantrum when, instead, they could be among those who take these circumstances and, through exercise of our freedoms in a respectful way, use this as an opportunity to get involved in our communities and do what we can to make a difference.  Temper tantrums do not make a difference.  You do not make progress that way.  You make progress through dedication, hard work, respectful communication, listening, kindness, proactivity, knowledge, and understanding.

I also read something written by John Adams that is a little bit frightening.  It is the idea that governments are only good when people are good. "Our constitution was made for a moral people.  It is wholly inadequate to the government of any other."  Houston, we have a problem.  I don't think that we are acting like a "moral" people.  We need to be better!  We need to use the space and CHOOSE to be moral!  I am not making a comment on lifestyle choices or any of that.  I am commenting that we need to behave in a way that is reflective of the respect and decency that our founding fathers assumed would describe the bulk of the people who were blessed to live in the great country they were working to establish.  Just because we look around us and see people making bad choices and just because the media chooses to focus on that because, lets face it, it is pretty entertaining sometimes....just because "other people" are behaving badly does not mean that it is acceptable or excusable or in any way an example that we want to follow.  Rather, we need to CHOOSE to be better than that.  Just you.  Just me.  We can't choose for other people, but we can embrace the fact that we can be a force for good by being a good example.

We are good people!!!  We have so much potential to make good things happen!  We just need to start looking for the good--we will ALWAYS find what we are looking for.  The antithesis is also true--if we are looking for bad/negative, its there and we will find it. Its like a self-fulfilling prophecy.  We just have to choose what we want to see.  Our behavior follows our perception, even unconsciously at times, so we have to check our perception and choose our focus wisely.  Lets look for the good and then behave accordingly!

I think that, as a parent, there are days (weeks) when it feels like all children (and perhaps, occasionally, spouse included) are conspiring against you in some evil plan to destroy your sanity.  Sometimes they win and you find yourself eating something you shouldn't after the kids go to bed, hoping your husband won't notice how many bites you go back for.  Other times, you win and you laugh with maniachal-ness, behind their backs.  Perhaps that should be a clear sign that they actually have, in fact, taken your sanity....just without you knowing.  Regardless, I sure do like it when I can laugh things off better than when I feel myself sinking deeper and deeper into the pit of parenting hell.

These weeks usually come after a period of GREAT days.  It's like you let your guard down and they take you while you are starting to chill out and relax a little, basking in some of the things you might have actually done right as a parent.  They shant be foolish enough to allow us to become cocky, however, and they destroy this feeling of temporary bliss.  Shatter it.  Obliterate it.

The unfortunate thing about this wave of sanity destruction is that it includes more than said children and spouse.  The dog is in on it.  Let me describe....

You know hurricane Matthew?  Well, his twin, by the same name, resides in our house.  After a period of lulling us into bliss, Matthew's fury has been unleashed.  For the sake of trying to focus on the positive, lets take a trip down memory lane to the last three weeks.

Matt started epilepsy meds.  Almost the day after he started, we began to see improvement.  His face seemed more alert, he seems to perceive and feel/process more emotion.  His language took a LEAP forward and he started to echo more words, finish more sentences in the books we were reading, carry on more "conversations" (he would look right at you, stay engaged and allow you ask him questions which he would appropriately answer), follow more instructions.  His drooling stopped almost completely, he seemed SO HAPPY and he was more affectionate than ever--so many hugs we literally felt smothered in love.  I was almost skipping around, lighter than air, feeling like our prayers were being answered.  I felt a hope for the future that I had literally fought to allow myself since he was four years old.  AMAZING results. People would ask how it was going and I would RAVE about my son.  Those he would interact with who knew nothing of the meds would comment on the amazing improvement.  It was clearly helping.  And that, to me, was an answer to prayers.

I promised myself I would write it down--document what we were seeing because I knew that the slump would come and I would need to be reminded of how things were and how right I felt about this med and how we just need to plug onward and endure this little blip.  I thought about it and even had conversations with myself in the form of mini-pep talks so that I would be ready when the pattern persisted and "what went up must come down."  Well, down came fast and hard.

With an increase in awareness of those things around him has come an increase in anxiety, prompting more ear-piercing screams (with a giant smile on his face, mind you), more impulsivity (I see more around me and I must therefore touch and try to break more around me), more attention seeking (I want to interact more, but don't understand how to do so functionally yet), and more CRAZY in our house and at school.  I do NOT think that, isolated, this would feel discouraging, but that is where the conspiracy part comes in.

When Matt's behaviors and anxiety increase, it is contagious.  Adi has started a new routine of active "trying to push Mom's buttons" that begins when she gets home from school and ends when her eyes finally close in sleep.  She is sassy, sarcastic, defiant and a stinking PILL combined with a level of cuteness and moments of total humility that make it so hard to punish her.  She started to have some challenges at school as well which were VERY difficult for me to emotionally wrap my head around that I'm positive were having a dramatic impact on her behavior.  So combine her attention-seeking with Matt's....quite the storm.

Add Izzy to the mix.  I called on some reinforcements this morning so that I could focus on Matt and see if we could help set him up for a more successful day by being 100% devoted to him.  Grandma was stuck to the other two like glue and we tag-teamed our way through a chaotic morning.  Matt still did laps around the table in between each bite, slammed the microwave every time he walked past it, pulled Adi's hair a few times, etc....but it was an improvement.  Well, yesterday, Izzy ate about 10 cookies which she stole off the counter and devoured while I was running an errand.  Today, I knew the puke/poop were coming.  I was pleasantly surprised to wake up to a hyper but vomit-less dog.  Well, lulling strategy worked because I thought we were free and clear. Alas, she went upstairs while I was at the gym and ate Matt's poopy diaper from earlier in the morning that I had neglected to take out to the trash.  So poop face greeted me when I got home.  I had no time to bathe her because I was racing to work....and I came home to find MASSIVE piles of chocolate chip dog puke all over the floor of our home office.  So poop/puke face is about to get a shower.

I think we all have days (weeks) like this.  Though I teeter on the edge of sanity, I am super grateful still that I have the perspective to know that this too shall pass....like gas (or in our case, poop/puke).  We just have to remember that, when teetering on the edge of our sanity, we ARE getting stronger though this little process.  My stomach and ability to deal with vomit have improved dramatically.  My fuse has lengthened  through all of these tests of patience.  My creative "skillz" when it comes to making up punishments has definitely improved.  My stealth ninja ability to eat things I shouldn't while my children sleep has been appropriately practiced.  My ability to love without condition (that's unconditional love, to spell it out) has most certainly grown.  And....I kind of think that's what its all about.

Big Steps, Big Faith

Awhile ago--and since I have no concept of time whatsoever I'm not even going to gander as to just how awhile ago it was--Todd and I started to suspect that there was something wrong with Matt's brain.  Lets be honest....I started to suspect and almost become obsessed with that idea. I wrote about this in a recent post (Lighted Path).

I took this info to my new doc and the minute I said "I'm open to medicating," he ordered another, lengthier, EEG.  He suggested we sedate Matt (normal recommendation), but Todd felt strongly that we not.  We learned through this process that the meds used to sedate kids, historically, have been in the same family as anti-epileptics and, therefore, could impact the results of the test.  So Todd suggested we needed to hold him down.  Finding a day when Todd could be there to hold him down was a feat in and of itself, but we managed to get it scheduled very quickly.  It was recommended that we bring him in sleep-deprived and, with the help of amazing friends, we managed to keep him up the ENTIRE night (we gifted him a single hour of sleep).  Everything went great and we managed to, miraculously, keep Matt entertained during this 6 hour process (and he even slept for part of it, which he has never done).  

I heard from the doctor today and we were told exactly what I expected to hear--that this EEG, just like all the others, was abnormal, showing issues in his left central temporal lobe.  He recommended that we start medication to prevent, reduce or stop any seizure Matt might be having.  The official diagnosis is epileptic disorder and the abnormalities in the EEG are patterns consistent with a kiddo having complex partial seizures.  

So there you have it.  This is a pretty big step for us.  It was a longer journey than it might have needed to be for some, but for me, it was a perfectly paved path because I feel TOTAL PEACE about starting these meds.  In fact, we started them tonight.  There are things you do with your kids that you are SURE about and things you just do to eliminate it as a possibility.  This is more on the sure side of that spectrum.  The part of me that has faith wants to say that this is something I am sure about--that I know God led us to this point and it is, in some way, going to be a big deal for Matt.  The fearful part of me wants to say nothing so that I have zero expectations and don't experience another disappointment.  But the deepest parts of my Mamma Gut are telling me that the best thing we can do for him is address what might be going on with his little brain, and this is the first real attempt at that.  So I'm optimistic.  :-) 

Tikkun Olam--Repair the World

We went out to dinner a few nights ago with an amazing couple and, while chatting about various things, they brought up this phrase that really resonated with me. 

Tikkun olam.

It is a Hebrew phrase that means "repair the world."  

I thought a lot about what that means--leave the world a better place; look for opportunities to serve and lift; pick up litter.   :-)  After a couple of days, I started to realize that, for me, it has another meaning as well.  

I think that this phrase could have something to do with the repair of souls.  As we work on becoming the best people that we can--at peace with ourselves, clear perspective, understanding our purpose--we become capable of opening our eyes and seeing what God wants us to, both in and about others.

Simultaneously, I have thought a lot about the purpose of people who have special needs.  I know...sounds strange.  To be clear, I have a strong testimony that those born with disabilities were some of the most choice spirits in the pre-existence (pre-earth life) and that God sent them here to get a body (part of his plan), but allowed it to be a body with special needs to protect that choice spirit.  Matt, for example, will not have some of the same temptations, trials, and struggles that a typically developing kid will.  He will not struggle with peer pressure, work to avoid addiction, take advantage of people, or be a mean person who does bad things with ill-intent.  Matt will be protected, literally, by his disability from things that would keep him from returning to God.  He is "safe," so to speak.  I understand all of that so clearly and there is a gift in understanding that perspective because it helps me deal with insane amounts of fecal matter, scratching, chucking food/other objects, screaming, and other equally frustrating behaviors.  

All that said, I think they have a mission--a purpose--beyond just getting a body.  I think they were sent here to repair the world....to repair our souls.  

If you spend any amount of time with a person who has special needs, you will immediately note the absence of gile, the rawness and realness of their emotion, the ability to love without caveats.  To see this, you sometimes have to look past a messy face because they can't properly swallow their food or don't know to wipe their face.  You might have to pretend you aren't startled by a tick or a vocal outburst.  You might have to see past a behavior to the functional purpose behind it--they want your attention and love, but don't know how to get it in a socially appropriate way.  If you invest enough to do this, your soul will be affected.  

On Sunday at church, Matt could not sit still.  He had ants in his pants big time.  That little boy, who was frustrating the heck out of us at home and had made a giant mess with items he had swept off the counter before church and who had danced naked in the bathroom as poop fell off his bum and then pooped in the tub full of water for the second time in a week....that same little boy decided to do a little "repair" in his small world.  He cannot talk, but he squacked "happy! happy" and pointed to people he recognized that were speaking in church.  He chased after someone he recognized as she walked between pews and pulled her down for a hug.  He kept bolting from my arms to a girl he had never met to throw his arms around her neck.  He hugged a dear friend who needed a hug three different times and called her "cookie" as she is a master baker (he doesn't forgot someone who brings him cookies).  I realized as I watched this that it was inspiring me to look more closely at him because HE was my example that day.  You repair the world through love.  You repair souls through love. 

I have been so anxious as I consider the state of the world.  My kids, who have been taught that all people are our brothers and sisters and have never seen color before, will be able to watch the news someday where they will hear phrases like "black lives matter" and see fights/arguments over race when they never considered that there was a "black" and "white."  They might hear a self-absorbed presidential candidate with no class whatsoever call a person with a disability the derogatory "R" word when they have seen tolerance and acceptance modeled both at home and by their friends.  If we could all attempt to look outside of ourselves, through a window rather than a mirror, and apply that beautiful phrase Tikkun Olam, that would literally solve most of the worlds problems. 

My Matt, Adina's Brielle, Aman's Sukman, Annie's Shawn, Sandra's Tony, Allison's Drew....these kids were sent to us with the purpose of helping to repair our souls.  They refine us through painful fire as we are daily dealing with unpredictability and struggling to understand and find purpose in the trials that sometimes accompany their varying disabilities.  But they also are helping their little worlds to become better by blessing the souls of those they come in contact with....IF those they come in contact with allow themselves to be influenced by their amazing spirits.