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. 

He Dunged it Again

Yesterday in Sunday School at church, we were studying an Allegory found in the Book of Mormon about an Olive Tree.  The allegory is intended to help us better understand God's love for us--He is the master of a vineyard of olive trees that He works SO HARD to preserve.  His methods include grafting (and re-grafting) when necessary, transplanting to increase likelihood of growth potential, dunging the trees for nourishment, leaving it alone for a bit to see if it has the strength to regenerate, etc.  All of the things that He does are for the benefit of the tree and to help it bring forth the best possible fruit.  To be clear, God gives us experiences, nourishes us and moves us around to increase our potential to be happy and reach our growth potential.

Well, yesterday when we got to the part about dunging, I got the giggles.  Not to make light of a beautiful analogy, but we had a little literal dunging in our house yesterday.  Mind you, it was a character-building experience, so the connection works.  I was in the bathroom helping Adi get ready for church and went down the hall to wake Liam up, passing Matt's room en route.  I was hit with the stench even with the door closed and smiled softly to myself, thinking how grateful I am for a husband who takes care of Matt's horrible, messy diarrhea on the mornings when he is home.  Just then, a happy husband comes bounding up the stairs, chipper chicken, all ready for church and kisses me as he passes me on his way to Matt's room.  Knowing what he was in for, I walked back to the bathroom to finish helping Adi and kept one ear perked to eaves drop on what I knew was about to follow.  He enters Matt's room and immediately starts chatting away to Matt about how stinky his room is: "good morning stinky!  Wow, your room smells terrible!" All in a happy voice.  Matt starts saying, "mo-ning!" and "Stinky!" in response.  Todd takes him into the bathroom and unzips his jammies (Matt sleeps in one piece because leakage isn't just a possibility...its the norm), and groans.  I hear him say "Oh my gosh" under his breath about 30 times and I know he grabbed for gloves.  I ALWAYS glove up for this experience. Todd thinks he is skilled enough to only glove when it is extreme.  Its extreme.  Matt is literally covered with nasty poop up his back and his front as well as down his leg.  Todd begins the process of wiping him down so that he can put him in the bath.  While doing so, the wipes fall off the back of the toilet and Todd reaches down to grab them at which point Matt walks into his head.  So Todd screams (a very manly scream of course) and I hear this "NO!  MATT! AHHH" and I simply smile from down the hall.  A few seconds later I figure compassion might be in order, so I walk down the hall.  Todd almost crashes into me as he races out of the bathroom with his head down, pointing to the top of his balding (sorry Todd) noggin, and questions me in a panic...."Is there poop on my head?"  Not knowing everything that has happened yet--only hearing the drama--I burst out laughing at the question...."is there poop on my head?"  How many times have you been asked that before?  I look, trying hard not to laugh as Todd simply is not seeing the humor yet, and do not see any poop.  He doesn't exactly want to swipe at the top of his head with the used gloves OR with a bare hand in case there is, in fact, poop on his head.  So, annoyed that I am not seeing it and convinced he has poop on his head, he goes and looks in the mirror.  Yes, there is, in fact, poop on his head.  Turns out that Matt walked into him before Todd had wiped him and the poop touched Todd's head while he was bending over.  Yes, he did shower.  Yes, we were late to church because Todd had poop on his head.  And yes, when we talked about getting "dunged" in class today, I did laugh.

Now, we have a lot of dunging experiences in our house--both the literal and figurative kind.  But what I learned as we talked about this allegory is that sometimes these experiences are exactly what we need.  The master of the vineyard does not throw dung on us haphazardly.  He will not do so unless it serves the purpose of nourishing us in some way....unless it is aimed at helping us grow.  We put a 4 inch layer of dung on our garden this weekend and I tell you, I would not have shoveled that crap (pun intended) if I didn't know for a fact that our little garden was going to benefit.  I feel the same is true of our dunging experiences.

When I was working for Stephen Covey, one of the ladies who was part of our dream team was going through something very difficult.  She described the fact that she felt like she was crawling through a pile of manure and could literally feel it getting under her fingernails as she dug with all of her might.  She was confident she would eventually emerge, but she had to keep digging.  I think that is our role--to keep digging.  We have to dig deep and get a little poop under our nails sometimes if we are to reach our growth potential.  What nourishes us the most, in the long run, might also stink pretty badly as we are digging our way through it.

Perhaps a bit of a stretch, but I am grateful to know that my vineyard has a Master. Looking at what we are going through right now (because, candidly, I feel like the poop right now is starting to choke me a little) feels manageable IF it has purpose.  If I know that I am being given what I need to nourish my potential for growth, I can start to see it differently and look for what it is that I am supposed to learn.

Now, if you'll excuse me, I have to get back to my digging :-)

Lighted Path

We have observed another tanking in Matt's progress and behaviors.  It is so incredibly frustrating to be on this roller-coaster sometimes.  Just when I start to think that "we're getting the hang of this" and walk with a little more spring in my step, a giant cloud of doom takes residence directly over my head and laughs (yes, the cloud can laugh....with that maniacal laugh that Blake Shelton uses on the voice when he steals someone directly from Adam Levine) before dumping large amounts of humid rain on my freshly flat-ironed hair.  It's a bit of a bummer, to say the least.

Behaviors are resurrected from Matt's past evil phases--I'm convinced he looks back and recalls those that were most annoying and brings those specific ones back to life.  Right now, he is scratching like a large cat with razor nails that I cut every five seconds but still, somehow, gouge flesh.  His favorite is to take his hands up the back of my shirt, find my bra strap and grab that, snap it, and then scratch his way down...or go down the cleavage--that's a fun one. He is screaming with this deep-throated, loud noise that it literally so painfully harsh that it is literally causing vocal nodes.  He swipes ("swiper no swiping") things off counters, tables and other surfaces where they belong and are sitting nicely, doing no harm to anyone.  This includes food (plates of it), pots on the stove that he swipes across the stove and onto the counter, papers, computers....anything on a flat surface that with a large swipe of his arms will do maximum damage.  He loves to bang things, including the oven door.  Lets talk about how fun that is when I am baking.  Pantry doors, fridge, dishwasher and toilet seat are other favorites.  Today he banged his glass so hard on the counter that is shattered into a billion shards.  Talking has become impossible unless all of your attention is directed at him.  That makes for a really productive conversation with other human beings--and eyes on Matt is not enough.  He's no fool.  If the topic strays from one directed at or for him, your eyes seek the eye contact of another human being, or you happen to laugh/comment on something happening within earshot, Matt is mad....and thus emerge all of the above listed behaviors, most especially the FACE swipe (don't forget the razor nails).  That's a fun one.  A small child grabbing your face with whiplash intensity, forcing you to look him in the eye and attend to him and him only. Really inspires loving, tender experiences.

He is happy when he has 100% of an adults attention, when you are wrestling, tickling, or throwing him around, or when he is reading a book with you.  Even then, he'll lunge at me with love, but such brute force that I have been knocked over more than once. I need a clone in a protective suit of some kind.

Needless to say, this has taken a toll and I am desperate for answers....again.  I feel like we took a little break from all of this when he was in his good phase.  The timing was ideal (and probably somehow related) because we were dealing with his knee surgery and recovery, and because I feel the need to compartmentalize our drama, I could not have wrapped my head around this in the way I need to back then.  Well, here we are....and my head, heart and soul have started to give me a message that has left me a tiny bit confused.  I feel like we need to look at Matt's brain.

Autism doesn't fully explain Matt--it explains only some of his behaviors and there are a few things that are so "not autistic" that it leaves me a bit confused. I know...it's a spectrum.  I get that. You know one kid with autism and you know one kid with autism.  But my kid...my Matt....has something more going on.  His intellectual delays are extreme.  His ability to retain and process information is severely lacking.  His challenges, I feel, are more related to something going on in his brain than autism.

I started this journey when I pushed our neurologist to answer the questions I didn't know to ask--I basically asked what I don't know to ask that might help give us a clue or insight into what is going on with Matt--that might explain him and some of his struggles in a way that autism doesn't.  He did make some very insightful discoveries as a result and noted, in particular, that Matt might have an abnormally developed brain, specifically in the areas responsible for speech and cognition.  So I've had this strong urge/desire to look more into Matt's brain--to understand it a bit better.  However, I feel paralyzed because I don't really know where to start.  Google: brain problems??  I honestly haven't even know what to do.

About a week ago, a friend of mine sent me a link to a Ted talk, the premise of which is if you want to understand a kid with a developmental disorder, you cannot look at behaviors....you have to look at the brain.  DING!  Totally resonated with me. This is that talk.  She talks about a specific way to read and interpret EEG's such that you are able to accurately diagnose what is going on in the brain rather than relying on observable behaviors to make that diagnosis.  So I start thinking, "hmmmm, how can I figure out if this is legit" and start asking questions of Matt's "team" of medical professionals.  He has an appointment with neurology at the end of the summer and I'm going to do my homework to prepare for that to make a case for this kind of research into Matt's brain.

Yesterday morning, I had a meeting with Matt's developmental behavioral specialist.  This woman is quite the genius, I tell you, and I was really looking forward to meeting with her.  When I am at my most desperate, she is a little breath of encouragement and answers.  As we were getting ready to get the kids off to school so Matt and I could head to her office, I got a phone call from a number I didn't recognize--right in the middle of the chaos.  I typically ignore these calls, but for some reason hit answer on my watch before I could even stop myself.  It was a friend of mine that I have known for years and years, but speak to only occasionally when we pass at a church function or run into each other around town.  She asked if I had a moment and I almost said no, but kind of gave her a "yes, but literally only a minute."  She was calling to ask whether we had ever done a brain scan with Matt called a SPECT scan.  They were considering doing one with her grandson (I think....maybe her son???) and wondering whether it was worth the thousands of dollars out of pocket that it would cost them.  He has ADD and struggles a bit, and this scan was recommended by a psychologist who noted it might offer insight into what parts of the brain they need to focus on strengthening, slowing down, etc. and how to approach med management, therapy, and so on.  She thought that we had, perhaps, done this or considered this for Matt.  Nope!  BUT I was SUPER interested in learning more about it as it seemed like exactly the type of information I was looking for.  I asked her for a little more detail and promised to ask Matt's specialist during our visit an hour later and then call her back.

So we head to Margaret MacDonald's (specialist) office...I have a list of things to discuss on a sticky note and in my head (as well as a prayer in my heart).  I asked her almost immediately about this SPECT scan and she replied that they had done one with her daughter.  It had been incredibly helpful as they discovered a serious brain injury that guided and helped really focus their therapeutic interventions, leading to a girl that is mainstreamed and doing quite well today.  Not that she doesn't have challenges, but understanding the area of her brain that went through this trauma helps Meg to understand what it is she might struggle with.  She then said, "we should absolutely do this for Matt.  This needs to be our next step." OK.  So I am not one to be easily persuaded to do something this dramatic very easily, but I am at the point where we are way past explaining this as coincidence.  We also talked about my next meeting with Matt's neurologist and she volunteered to attend, research this Ted talk in advance, and then we'll figure out how to approach it, with SPECT scan results in hand to help.

The conversation was super intense, fast-paced, and filled with challenges as Matt was his usual anxious self in her office, scratching my face and screaming (literally--that gutteral vocal-node-enducing scream) his head off the entire time.  I got into the car and started to drive home, amazed at what had just happen.  And when I had a chance to sit for a few seconds in relative peace during the drive, it hit me like a bomb that God had just handed me a pretty huge answer.  I kind of turned my gratitude upward, if that makes sense, and almost had this feeling of a smirking "your welcome for that one."

I then started to think about expenses and how this would be a biggie...and remembered I was going to get lasix--I had the consult scheduled for the following Wednesday--and the price was about the same as this scan.  I called and cancelled my eyes, given that this was absolutely more important.  Budget problem solved.  Now logistics....

When I called the clinic, I found out the details of the visit--it takes place over a couple of days, involves a comprehensive medical history, cognitive testing, and these scans.  I also found out that the child has to lie completely still for 18 minutes during the scan. Bubble popped.  I almost wrote pooped.  I guess that would be appropriate as well.  I was SO sad.  I told him that was pretty much an impossibility and asked if we were hosed.  He acted like we were for a second...until I mentioned sedation.  He said they DO have a sedation option, but he didn't think we would consider it given that it is only offered at their Orange County location and would require us to fly to CA.  Done.  Not a problem.  So we have started to look at the schedule and are hoping to get this on the calendar for May.

The reason I detailed all of this is because I wanted to remember.  I feel like feelings of hope and that sense that you are being totally cared for--that there might even be an angel or twenty watching, thinking, working, helping--can be fleeting.  I do not want to forget that undeniable sense that we had a prayer answered and that our path was being guided.  If this does nothing more than satisfy a curious mother, then I am grateful.  But I kind of have a feeling it might do a little bit more than that.  Knowledge is power....I have said SO many times that I wish I could look inside his head.  Well....we're going to try.

Chill Out, Mamma

Todd and I were on a short get-away to celebrate our 10 year anniversary this past weekend.  We were with two other couples—some of our dearest friends—and this trip represented a reunion of sorts.  We used to spend time as a group doing the most random things we could possibly think of.  We would rotate who planned the weekend/outing and the other couples had to just go along with whatever they had put together.  The more random, the better.

Though the weekend’s plans weren’t outrageous or all that random, we were reminded of why we love these friends.  They help us not take ourselves too seriously.

Todd and I have a life that is FILLED.  It is full and rich in the way those terms are typically used…for sure!  But it is also filled….filled with “stuff” that is important, but tends to bring out the serious and structured side of us.  We have a schedule that is planned out 6 months in advance (nature of the beast in his profession).  We have therapies and activities and all sorts of projects and problems we are facing and fighting (nature of the beast when you have children).  To some, we seem crazy.  To us, this “filled” life feels normal.

However, we realized something—having a filled life with a lot of serious stuff can lead us to take ourselves too seriously.  Never before in my life can I remember trying to consciously be fun or have fun or plan fun or add fun.  It just happened.  But now, I almost feel like I’m so focused on anticipating needs and making things happen that I forget to be and have fun.  Is that a pathetic revelation?  One of the things that drives Todd the most is his desire for fun—he is a fun seeker.  I realized with a bit of a jolt this weekend that I am often a fun avoider when the “fun” requires spontaneity and flexibility.  I think I have become so accustomed to “filled” that I almost fear the fun because it might mess up my schedule.  OH MY GOSH.  What has happened to me????

While walking through the shops in Carmel, Todd and I started talking about writing a book of all of the things that we have learned and experienced raising a child with autism and, we are discovering, a variety of other special needs.  Todd asked me the “why” question—what would the purpose of this type of project be?  My response was that I feel like “autism Mom’s” and other mother’s who have children with special needs (myself included) get caught in this trap of trying SO HARD to do what is right and best for their child that they lose balance and forget to live with and love the child that is right in front of them.  I suggested that the “why” is to help other families, through our trips and stumbles as we learn this ourselves, realize the importance of balance within their own families—not neglecting the other family members because of a hyper-focus on the child with special needs.  I think we can accomplish that by talking about what we learned (and the experiences that taught us), and how we applied that to our life as a whole—our other children, our other relationships, etc.  We often get so caught up in advocacy, research, experimenting with different “treatments” and diets, therapy, appointments, observation, and just plain hard work that we forget to enjoy that child AND give our other children/family members the same amount or level of attention, in both success and failure, recognizing accomplishments with the same enthusiasm, grieving when they struggle with the same degree of sincerity, etc. 

Here’s the connection: I realized that what I feel so strongly about—BALANCE—is the key to that philosophy and that philosophy is something I need to be doing my very best to practice day in and day out as I approach things with Matt.  Part of that is that I need to enjoy my other children more.  I need to make more time for fun with them.  I consciously stopped doing daily therapy with Matt so that I could focus more on simply enjoying him because my every minute with him was peppered with “how can I squeeze in more therapy” and I was stressed out when I didn’t get it all in.  Well, I’m looking at my other kids now and saying “how can I be more productive in my time with them?” every second of every day.  Sometimes the most productive thing I can do with and for them is to just enjoy them—to have fun with them.  Duh.

Time is the hardest gift for me to give because I feel like our time is so “filled.”  It is also the greatest gift we can give our children.  My goal is to reverse my “give me five minutes and then I’ll play” to be “lets play for 5 minutes and then I’ll try to finish this” so I’m sure the best use of my time is prioritized.  How we use our time is the best indication of what our priorities truly are—are they selfishly spent on things that make me happiest (i.e. a clean house, organized closet, projects, etc.), even unconsciously?  I have to give more than lip service to the idea that my children, next to God and my husband, are the very most important and precious to me and then do more of what makes THEM the happiest.

I have thought a lot lately about how Matt gives us a gift in his obsession with electronics because he keeps our entire family from becoming addicted to things that I feel are almost cancerous to family relationships.  I internally applaud us for watching so little TV and for spending so little time on our phones and think about how much more connected we will be in the long run because we just plain have to “check our electronics at the door” when our dude is around.  Maybe part of that is a way to make me feel better about what has been a HUGE struggle in our lives—his obsession makes our home life very challenging.  It also makes going out in public hard as there are literally electronics everywhere and all impulse control goes out the door as he pick-pockets people and pounces on strangers in an attempt to steal their devices. However, we have our other demons and distractions.  Shockingly, the good can distract us just as quickly from the “better” and “best” as total time wasters can distract us from that which is most important.  Good for me equals planning, schedules, strict rules, structure.  Better and best likely require a little more flexibility because it involves more listening, connection, and following the Spirit and less efficiency.  

My commitment is to have more fun.  I’m being serious.  I need to chill out.  Wish me luck.

Mamma Gut Part 2

I am a big believer in expectations--and I do not like to be let down.  I love people who create realistic expectations with me....and cherish those that meet and exceed my expectations.  I struggle when people let me down or don't meet expectations.  It frustrates me.  I think there is an element of trust that plays into this--if you create an expectation with me, I believe you.

I also believe in the self-fulfilling prophesy--that we behave in a way that is a direct reflection of our thoughts which literally turns thoughts into realities.  Create an expectation with me and I'm going to try to turn it into a reality.  Also, I have high expectations of people because I think that it helps them rise to the occasion--if you believe in them, you treat them like you believe in them, they start to believe in themselves.

Enter parenting--the ultimate opportunity to see high expectations play out and turn into realities with a few (try a billion) unmet expectations scattered along the way.

Now, lay my little theory out and test it against Matthew.  From the day he was diagnosed, I FOUGHT in my mind to continue to have high expectations, believing fully that my belief in him would help him be "cured" of autism, "catch up" from his delays, and reach his full capacity and potential.  I clung to the belief/feeling I had that Matt would catch up at some point and it helped me to see him for who he could be rather than through the lens of the long list of diagnoses that were piling up before me.  Three and a half years later, I think a little bit of reality has wiped the tint from my rose colored glasses and I'm starting to realize that I need to adjust expectations.

Here's the interesting part--I did not say LOWER them.  I do not believe any less in Matt than i did when he was born.  I just need to believe in MATT....the real Matt and not the one that I sometimes see in my dreams when I fantasize about the typical family we will someday morph in to or when I calm my jealousy of other families by changing him in my visions to be "typical."  I need to believe in his ability to reach his potential with the perfect imperfections that he came to this earth with.  My battle is that I have not really understood the reality that we are dealing with and therefore have struggled to know what to expect of him...what is appropriate to expect.

ASD (Autism spectrum disorder) is a sucky label that is used to describe about a million billion kids that are all totally different.  I feel like it makes sense to the world somehow when you say a kid has autism, but when you are living with it, it feels like a really vague, unclear and ambiguous label because we are looking for explanations and very pointed, clear descriptions of what we can expect of our child with ASD and what we can expect of their future.

I have felt for some time now like this label is insufficient in Matt's case.  It does not describe him.  I know there is more going on--yes, he definitely has autism, but autism does not explain what is going on with him to my satisfaction.  And, strangely, he falls short of expectations of a child with autism.  Many of them have a genius that is hard to explain, a gift that is beyond "typical" abilities, or something that sets them apart in a very remarkable way.  I have been asked countless times "what is Matt's gift?" and get a little pit in my stomach because I don't know....and not to think less of him in any way, but I don't see a budding genius in any specific area.

This leads me to today--I had a meeting with a new neurologist who also thinks that Matt has a seizure disorder.  He was able to describe with much more clarity exactly what he sees when reading Matt's EEG's and it was so helpful to have him sit down and walk through his findings.  Matt may or may not be having seizures right now (sometimes they can be so subtle that we are actually being instructed as to what we need to watch for with him that could potentially be seizure activity), but the likelihood of him having them at some point is pretty high.  He has been prescribed rescue meds so that we are prepared just in case he does.  As I sat and discussed this and several other findings/concerns, my Mamma Gut pushed me to ask the doctor whether or not something he sees in all of this tests might help explain Matthew's delays and disabilities because I feel like he has more going on than autism.  Thankfully, he honors the mamma gut and looked for awhile at the tests and shared with me that he also sees some diffused slowing brain patterns in Matt that are taking place in the left frontal lobe which is the same area from which the abnormalities are originating and is the area responsible for speech, comprehension, etc.  He suggested that autism doesn't explain this--that these are not typical patterns found in a child with autism, but rather are an indication of an abnormally developed brain.

While this might be super sad news to someone, it gave me a HUGE sense of relief and gratitude.  I pondered all day why.  Why was I not worried about this?  Why was I not sad to learn this?  I mean, with this comes the realization that Matt will likely never "catch up" or be "normal"--we can't pretend that autism is causing his intellectual challenges or that his lack of speech  masks his brilliance.  This should be devastating to me.  Rather, it helped to change my expectations.  Every intellectual victory seems sweeter if you realize that he had to climb a mountain to achieve it....vs. being frustrated that other kids with autism are able to pass standardized tests, write, read, know their letters, colors, numbers, etc.

As hard as I try not to compare because I recognize what a horrible and metastasizing cancer that can turn into, I would be dishonest if I said I never did.  But rather than compare him to his peers, I have started look at other children with autism who are doing so much better in school and have so much more ability than he does and wonder if there is something I am not doing that I should be.  Or when I hear about things others have tried that work, I feel "less than" because I haven't tried it yet.  However, if there is something more than just autism that "explains" Matt, it kind of relaxes me.

Matt's potential, spiritually speaking, remains the same--he is a son of God with a spirit that is equal in ability and potential to mine.  However, my expectations of Matt can start to change the more I understand about the reality of what he is dealing with.  I'm a fan of realistic expectations....and then exceeding them, which I am confident he will do.