Emotional R&I

I feel a lot of shame in the confession that I’m about to make, but it represents a personal epiphany that I need to think (write) out.  As I process, I’m hoping to gain personal clarity, but also offer insight into the mind of a mother raising a child diagnosed with autism.

First, I know, in my Mamma gut, that Matt has more than autism.  I’m not referring to the 7 formal diagnoses he has from the list of specialists we have visited.  Rather, I feel there is something that we have yet to unearth, understand, or recognize.   That said, I know that autism is one explanation for what we observe in our son that “makes sense” and helps us to socially excuse his behaviors in a way that most people can wrap their heads around.  Mind you, I realize there is so much that I don't understand about autism—it is still a mystery to me even though see it up close and personal on a daily basis—but it is becoming a commonly accepted and recognized label that helps me help others make sense of my Matt. 

So I’m sitting on a plane flying home from England and I started to read a book called “I Know You’re in There.”  I simply read the forward written by a boy who “used to be” autistic and I ended up in tears.  He talks about his parent’s patience and persistence in helping him find a cure for his ASD and how grateful he is to have outgrown it.  I immediately prickled…not because of what he said because I long for it to be true, but because I recognized at that moment that I am not his mom—I am not doing everything I can for my son right now and the reason is what I feel some shame about.

I think I avoid autism.  I think I avoid the uncomfortable space that research takes me to.  It forces me to look at Matt like a subject and not my son, but it also forces me to face the uncertainty of his future, stare at what we have yet to understand, and accept that there is still so much we don’t know.  That prospect is both exhausting and overwhelming, but in addition to that, it scares me.  Instead, I find myself compensating for his challenges rather than looking for ways to fix them.  I seek for solutions to symptoms versus cures. 

I’m not entirely sure why I do this—perhaps because I tell myself he isn’t broken and doesn’t need fixing.  Perhaps because a lot of the “cures” are still just theories…unproven by science, but worked for someone who knows someone who had a son who did something similar to Matt that went away when he made this simple change.  Perhaps it feels hard to me—requires a lot of work that I don't know will pay off.  Perhaps I don’t like change and dread instability (trial and error).  Perhaps because I can’t fathom it can be simple.  Perhaps because I think a lot of it just sounds plain crazy. And, perhaps I don't know how to do or feel strong enough to do some of what I know will be required of me to really help him.

I purport that I would try anything, but I find myself avoiding looking for creative possibilities because I cannot wrap my head around them.  I find myself resistant to research and reading because it requires me to face my fears about autism and Matt’s other disabilities, and to be open, vulnerable, and emotional.  Research sounds logical, and it often is.  In this case, however, it is anything but logical—it is deeply, deeply emotional because it is about my son.—my biggest challenge, my hardest mountain.  He brings out my demons and somehow reveals the best my soul has to offer at the same time.  I cannot figure out how to do what I need to—search far, wide, weird, and deep—to discover exactly what my Matt needs without feeling like it might bury me. 

I say that with tears flowing freely, recognizing that this confession might make me sound horrible, but comforted by the fact that this also represents a new resolve.  I have to do things differently if I want to get different results.  I don’t even know what the first step is.  No one can hand it to me, gift me the knowledge, figure it out on my behalf.  This is my journey because I have to do something with what I learn—implement by trial and error some of the different theories until we find the things that work for our unique little man.  I would love to delegate this, but instead I will continue to thank the dream team we are currently surrounded by and try so hard to be more open and listen more, read more, learn more without judgment, reservation or fear. 

Stephen Covey always said “R&I Julie.  R&I.”  Resourcefulness and initiative.  Time to put on some big girl panties and exercise a little R&I. 

Diarrhea from the Heart

Some writers describe getting writers block.  If that is the equivalent of writers constipation, then I am about to have writers diarrhea because I have no idea what I'm going to say, but feel like a whole lot of thoughts with very little consistency or form (hows that for graphic?) are about to come out.

I'm sitting on a beach in Maui where I have spent the past several days with three other women, two that I met when I landed here and one that I have admired and respected since the day I met her, but had yet to spend any significant amount of time with. It was a bit of a crazy, "meant to be" trip--from the day she invited me, I felt compelled, against all logic, to go and then my loving, adorable (insert many other sappy adjectives here) husband enabled me to come by purchasing plane tickets, taking days off work, and adjusting his plans so that our littles would have him in my absence.  I told almost no one--I almost felt guilty that I was running away because this trip came on the tail end of a couple of family trips to our cabin and only a few months after another girls trip.  AND it only proceeds a trip for my 40th by a few weeks.  Talk about spoiled.  I was almost embarrassed to admit that I was running away....again.  So I was quiet and tried to kind of hide it from people a little.

It wasn't until I arrived that I realized this is exactly what I needed.  Unlike any trip I have been on before, this was definitely an "adult" trip--I am with three women that are very independent, not anxious to please or to coddle, and all here for their own varying reasons.  We have spent as much time alone as we have together and each been responsible for meeting our own needs (I'm talking more emotional than anything) while here.  We've had great conversations, done several activities, and then separated and fed our own souls for blocks of hours at a time.  This is foreign to me.  I have never done that before.  I had ALONE time.  Seriously....when does a Mom get that?  NEVER.  I admit, it felt strange.  Not the least bit lonely...just foreign.

I realized that I shed a LOT of roles while here--mother, wife, daughter, ward missionary, pianist, friend, cook, maid, teacher, therapist, business owner, consultant.  For this week, I was just Julie.

In my long (hours) walks on the beach by myself, as I would listen to music and think, I learned a few things about myself.  I think I spend so much time hanging out with and worrying about others that I forget who I am just a little and morph into who they need me to be.  This week, I thought about what I like vs. don't like, what gives me energy vs. things I do out of expectation or obligation.  I thought about how I perceive myself and what shapes my identity.  I had a couple of pretty stark, pretty obvious realizations that I hadn't considered for awhile.

The first is how I still tend to compare myself to others.  While working for Stephen Covey, he would talk about 5 metastasizing cancers, one of which is comparison.  It is called a cancer because it is a sickness that overtakes the good stuff and slowly but surely creeps into every part of who we are, if left unchecked.  It is human nature to look at others and almost unconsciously "rank" ourselves accordingly to what we perceive about them--she's cuter (more fit, more attractive, more talented, more interesting, more capable, more compassionate....blah blah blah) than I am.  That automatically makes us "less than" by comparison.  The same is also true in reverse...thinking we are better looking (more fit, more capable, a better parent, a more patient person...blah blah blah) than someone else.  This elevates us by comparison and pride, egotism, arrogance and other super ugly things creep in.  Neither is constructive.  Worst part is that if we start to foster a comparison-based identity, we lose who we are entirely and become a function of what we see/perceive in others and how we stack up.

I believe, intellectually, that this is literally a slap in the face to the God that created us in all of our uniqueness and beauty.  He created no one perfect, but gave each of us a part of Him--we literally have the DNA of Divinity within us.  Comparing ourselves to others and therefore trying to become more like so-and-so or less like so-and-so distracts us from our individual missions and purpose.  If our focus is based on comparisons, we will never measure up.

I do this.  I spend a lot of time looking around me, often comparing the parts of myself about which I am the most insecure to the people that I love the most.  This does not help our friendships.  Instead of rejoicing in how beautiful, well dressed, poised, confident, competent, intelligent, talented, etc. my friend (or another person) is, I think it somehow makes me less.

There is a difference between comparing ourselves to others and being inspired by others.  The latter takes a certain confidence to start with--we have to believe ourselves capable of becoming more to actually start making progress in that direction.  If we are inspired by someone, we want to be more like them, and we rejoice in the steps of our journey to get there, grateful for the example they represent in our lives.  Doing this strengthens our relationships with others--allows them to me more open and genuine vs. making us anxious because we are constantly worried about how we stack up.  Its kind of like that friend you watch and then get excited when they grow a zit on their perfect skin, or gain a pound on their skinny body rather than being excited for them as they work towards being their best self as well.

I am literally surrounded by some of the most incredible people a woman could ask for--women that TRULY inspire me.  I could name them and tell you in a LONG LONG list what, about each, makes me want to be a better person.  But I have to fight the temptation, still, at the age of almost 40 (this is not a teenage problem only, I have sadly discovered) to compare myself and feel less because they are so much better than I am in so many ways.  Recently, as I have battled some pretty significant trials in our home life with Matt, I have become less and less confident about my ability to parent a child with special needs, where stability and consistency are but a pipe dream.  Unfortunately, when you feel weak in one area, it can easily spread and make you insecure in others as well.  Not sure why my inability to manage Matt's behavior somehow makes me less of a good pianist, or a slower runner, or a worse dresser, but it does.  That, my friends, is because I start to fall into this comparison trap.  I need to and plan to (I WILL) work on this.

The other thought I had is that I am scared, literally frightened, to go back to real life.  My life is no walk in the park (or on the beach, as I have blissfully experienced a number of times this week), but it is GOOD.  It is fully of joy.  Full of challenges, full of chaos, full of sleeplessness, full of scratching, full of children fighting for my attention, full of demands, full of responsibilities, but oh so full of love.  Wouldn't trade it for anything.  Why, then, am I scared?

I think it is because I want to go back better than I left.  Leaving is always hard on the whole family (perhaps I inflate my importance when I think they are somehow going to fall into a state of complete disarray when I depart, but I do know they at least miss my cooking), and my time away had better be gosh-darn well spent for the sacrifice they all had to make so I could be here.  I know I need to come home a better Mom than I left.  However, I also know that the road to hell is paved with good intentions....and no matter how well-intended I am after my period of introspection and recommitment, when I get home, it gets really real really fast.  I'm scared I will continue to want to throw Matt across the room when he scratches my foot for the 17th time while I'm trying to make dinner.  I'm afraid I will hear that horrible, angry voice that I use when I get irritated all too soon after returning.  I worry I will start to get jealous again of the typical families I see doing typical things with typical children that only use typical bad behaviors in public.  I fear that selfish me will start to resent my life rather than keeping the perspective I have right now that my life is the perfect life for me.

The road to hell may be paved with good intentions, but good intentions can lead to better behavior, so I guess it is still a good place to start.

Maui has been good for my Julie soul.  For 5 blissful days, the only thing chasing me has been a sea turtle.  I am excited to be needed again, to step back into my 75 roles, and to try to be a better Julie in the midst of the madness that I cherish as my life.  Heaven help me to do it better every day....to "use" my sources of inspiration to help me become more...to keep growing and morphing into the Mom, wife, daughter, friend, cook, maid, teacher, therapist, etc. that I am supposed to be.

Voices in my Head

With a title like that, I sound like a crazy person.  Perhaps that would be an appropriate deduction, given that I feel like a bit of a crazy person lately.

I hear voices that tell me about my shortcomings.  They sometimes whisper.  Sometimes the tone of them is constructive (you really should spend more time with your children rather than worrying about how clean the house is....or perhaps you should play with your kids a little more rather than packing your schedule so tight that you will miss something if you do).  Other times, it is the opposite and I feel mentally and emotionally a little beat up by what they have to say.

Lately, the voices are saying things like this:  "Matthew hates you--you're the one he behaves the worst for."  "Adi's acting out because she doesn't get what she needs from you."  "Liam isn't very strong because you aren't spending enough time working with him."  "You are Matthew's Mom.  You should know how to handle him better than anyone and you suck at it."  "You are mean to your poor husband and take all of your frustrations out on the most selfless man you know."  Yeah....not so productive.

Matthew has taken his aggression to a new level--he kicks SO HARD and will literally do 360's on the floor, flailing his legs, to avoid having you pick him up and move him during a transition from one activity to the next.  Where I used to be able to just kind of "help" (motor him) through a transition, I end up dodging appendages and have to be swift like a ninja during a pause in his kicks to grab onto his armpits, poke my fingers into them, and lift to get him to stand and start moving in the right direction.  I can still pick up his 63 lbs, but I am not strong enough to hold him once the limbs go into motion.  He is lunging at me with scratches--what used to be a little clawing at my hands (slight understatement, given that it sometimes drew blood) has now turned into full-fledged cat-fight moves.  And my sweet little Adi--she is too little to really defend herself and her reflexes are no match for Matthew's speed when he goes after her little head of hair and yanks hard enough to give her whiplash.  There is not warning as to when the aggression will start--it seems to be impulse-driven--and it is starting to take a toll on our family.

I spent some time this weekend helping my 200 lb brother in law who has Down Syndrome move from place to place with an injured knee.  Going potty is a feat when your legs don't work very well.  Unfortunately, his health has been very compromised for years, so adding this injury to it has made it tough on him.  I kept thinking that my poor, post-polio mother-in-law is his primary care taker....and she does it!  She can handle it.  My sister in law says that she has angels that help her.  I believe that.  And I'm now starting to ask, where are mine?  She can physically, emotionally, and mentally handle, and has handled for 40 years, my sweet brother-in-law (after whom our Matthew was named).  I'm half her age and have only been at this for 7 years.  Am I as strong as she is?

On one of our more difficult days this week, another voice--this time not in my head, but an actual out-lout one--told me something that I have reflected on a number of times.  One of Matt's ABA tutors came for his usual session on Friday.  I saw her coming and walked out the front door to meet her.  We had a house full of people and it was all I could do to hold it together while juggling their needs with Matt's behaviors and all of that fun stuff.  I saw her and let go of Matt's hands in a literal hand off, saying, "he's yours!  I can't!" And I proceeded to start bawling.  Verbal vomit followed as I described to her everything he had been doing that was difficult and frustrating.  I ended by quoting one of the voices in my head, "I'm his Mom!  I should know how to handle him better than anyone and I suck at it!"  She listened to me with total empathy and got some tears in her eyes as she basically said that this is hard.  No one knows just how hard because they don't live your life.  We deal with it for a few hours and you are on duty 24-7.  It's OK that you admit it is hard.

What she said next brought me so much comfort and, for a little while, silenced all the other voices.  She said, "Matthew is one of the happiest kids I know.  That is a reflection on YOU.  You and Todd are raising him in a home that is happy!  You are positive people.  You see the good in him.  You love him and build him and are raising him in a way that makes him happy!"  What?!?  We have done something right?  I guess I never credited us with Matt being happy--I just figured we got lucky because he is cute and, for the most part, a really happy kid.  But I think she is right!  We nurture happy here!  I am grumpy a lot lately, I feel like, but somehow the happy penetrates the grumpy and gets through.  His happy spirit is a reflection of our intention.

Silence ye voices!

I was giving a presentation once about habits to a group and the speaker before me talked about how you can't just break a habit...you have to replace a habit.  I think the voices in our head are the same way.  We can't just will them to go away--we have to replace them with more positive voices.  Not that the two have to get into a screaming match until one gives in and retreats.  Rather, we simply need to allow ourselves to see the good and, as crazy as it sounds, allow the good thoughts to articulate themselves in our minds.  In other words, rather than just allowing them to be fleeting thoughts, dwell on them a bit and give them words.  The more we listen to the voices and entertain them, the deeper their roots become and the harder they are to get rid of.  I guess what I'm saying is that we need to deepen the roots of the positive voices so they actually stick.

So again, i write a post of something I am struggling with.  There are more voices in my head, unrelated to parenthood and even wifehood, that also need silencing.  As easy as it is for me to put words to this thought, it is something I feel like I am struggling with a lot lately.  So this is my therapy--to articulate the thought because once it is clear, I am more responsible for holding myself accountable to it.  And, in the spirit of this post, I am totally capable, I am up to the task, and I am confident that God didn't make a mistake when he gave me this crazy crew, so I must be the right Mom for this job.  High five happy voices!

What goes up....

Are you ever smack in the middle of something fantastic, thoroughly enjoying yourself, when you suddenly talk yourself out of enjoying yourself anticipating its end?  Autism is a roller coaster--you have super low lows followed by these exhilarating highs which send you back to a low, often down a hill that leaves your stomach at the top and makes you feel like you might puke.  We had one of those bottom-of-the-pit lows recently as we went through everything with Matthew's neurological stuff, the issues with his knee, and some destructive, aggressive, harmful behaviors that I thought were going to make me lose my mind (or run away) . While in the middle of all of that, I could not see that things were going to improve and kind of was a lump of discouragement, struggling to keep running from this doc to that one, one therapist to the next, making a million phone calls, doing research, reasoning through decisions, and trying not to kill my other children because my patience was sooo tapped.  Oh yeah, and I helped start another business in the midst of all of this.  I really, genuinely started having thoughts of running away or hiding.  Finally, I put everything on hold and started to take one thing at a time.

I detailed the Mamma Gut experience in my last post--how I just did not feel like the diagnosis the neurologist gave us was right and I was reluctant (putting it mildly) to medicate Matthew based on her "theory" which my WebMD education didn't gel with.  Well, we took the scientific approach and I was awarded the opportunity to gloat (I only did so with those I was closest to...and several hundred facebook friends) when we discovered that what we were seeing was not, in fact, epileptic.  Talk about a relief.  Unfortunately, though we were thrilled that we did not medicate and Matthew was not having several seizures a day, we did discover a significant abnormality in his EEG which was not explained by her debunked theory.  She said what she saw was a pattern consistent with what are called benign rolandic seizures. Mind you, the word benign is operative here....and that was pretty much the only word I heard.  She basically said that, at some point, the patterns might indicate he is going to start having seizures--as in the big kind (grand mal).  Therefore, we were instructed to start coming in for annual EEG's to monitor these patterns and she requested I come see her in 6 months.

Simultaneously, we were working to figure out what to do about Matthew's chronic subluxation of the right knee cap.  It literally pops out ALL the time.  It's gross.  Well, it used to be....doesn't even phase me anymore.  The first doctor told us to do PT--we did and within a week, the PT said it was pretty much pointless.  Clear to her was the fact that this was not a muscular issue or something that could be fixed by strengthening muscles.  The doc rejected her theory and, several hundred (more like thousand) dollars and many many hours later, we sought a second opinion from someone who applauded her for her insight.  She was right.  We were then referred to a specialist at Shriners hospital who discovered that Matthew does have a  knee issue that will require surgery to repair (boo), but that the surgery is not urgent (yay).  We are in a holding pattern, waiting for the knee to cause him more pain or increased instability to the point of interfering with daily activity.

Medical stuff out of the way, we were still soooo stressed about Matthew's behaviors--he was scratching me in the face, scratching my hands until they bled, pulling Adi's hair, pulling my hair, lashing out at Liam, having intense vocal outbursts....I think I described most of those behaviors in a previous post.  Well....here's the interesting thing.  After we sedated Matthew for the second time (24 hr EEG), we noticed that a lot of those behaviors just started to disappear.  Just as quickly as they had come on (think Thanksgiving flight where a switch flipped), they started to go away.

I call the past two months our our months of miracles.  Matthew started to show and express more affection and now, multiple times a day, hugs and kisses us and initiates cuddles.  He tells us he loves us....spontaneously.  We feel so connected to him because of this change that I cannot describe what it has done to our hearts and our relationship with him.  We waited 7 years for that....and believe you me, it is not a gift/blessing that we take for granted.  As I put Matthew's pants on every morning, I say "one leg, two leg" out of habit, and he almost always chooses that moment, as I kneel in front of him, to lean his little face in and give me a fat wet kiss as he says "hug! hug!" He then throws he 60 pounds into me so hard it almost knocks me off balance every time.  Without fail, I stop what I am doing, throw my arms around him, and squeeze him in the tightest, most tender hug and take a moment to be grateful.  Talk about a fantastic way to start my day.  I might mention (because poop always has to come up), that this hugging session is usually right after I have changed and cleaned up a massive explosion, so the little bit o' love is extra appreciated after what I have just endured.  

Matthew also decided that he is not longer Matthew--he is MATT.  He had a tutor come over one day and we were talking about how frustrating it is that he can't say his name (we have been working on it forEVER), and she commented, "too bad his name isn't Bob."  Ding ding!  "His name could be Matt," I replied and Matthew chimed in saying "Matt! Matt!"  Ever since then, you can ask him his name and he enthusiastically replies, "Matt!"  If we slip and call him Matthew, we are frequently (and sternly) corrected.  He is definitely Matt.  I love that he wants that!  He also turned 7.  He had been practicing his response to "how old are you?" and had "six" nailed, so we were worried.  Within about a week, he was consistently, "seben."  He had been labeling things fairly well by pointing and naming an object.  The list was fairly limited, but I was so excited about those he could label and thrilled he was pointing at things.  Well, we noticed his list suddenly increasing and started a program as part of his therapy to push for two word requests--"want_____" was the first.  He nailed things like "want cookie" and "want book" and, shockingly (sarcasm intended), "want phone" within a week or two.  And then all of a sudden, it exploded into "I want book" and "want a phone" and "play shake" (thank you Taylor Swift for inspiring Matthew to talk) and "eat cookie" and "help please" and all sorts of other short, but very definite phrases to make requests. He started standing by the piano while I play, clapping and saying "play again please" when I stop.  That ability to articulate something that in turn manipulates his environment has given him an element of control and that control has calmed him.  He seems less anxious, his vocal outbursts have decreased, the negative behaviors have started to go away.  I listen to a respond to his requests all day, in awe that Matt has a voice.  He literally has a voice for the first time.  Well, he HAD a voice (and a loud one at that), but he contributes to our day and makes his desires and opinions known.  It is the most incredible feeling.

Just a couple of months ago, I remember wondering if we were going to face a life of never knowing what was in his head because I couldn't imagine how he would ever possibly communicate. Yes, there are devices to help in that regard, but his ability to reason and put thoughts together seems pretty delayed as well.  I was concerned that an intellectual disability would prevent him from every being able to functionally use them.  I kind of feel like this is a glimpse of hope that he will talk to us someday.  We are going to see the heartfelt prayers of our family (especially sweet Liam who has said many a prayer asking "help Matthew to talk") be answered.

Todd and I have talked about how blessed we feel a LOT lately.  We feel like these bursts of progress represent little miracles and we feel so optimistic.  Well, I got a call today that Matthew had what appeared to be a seizure at school.  This was the second time in a month--after the first, I immediately called the neurologist and was told to do nothing....just monitor.  Both times, his head slumped over, his eyes fluttered and he was completely unresponsive to touch or his name for about 30 seconds.  He was pretty tired both days after that experience.  There was a tiny piece of me that thought, "here we go!" and I started to anticipate the sharp decline that leaves my stomach at the top of the hill.  I called the neurologist and was told that she wants me to come in and talk about meds.  Mamma gut started to scream and I cancelled an appointment I had and am on the hunt for a new pediatric neurologist--we've got to figure this out, I realize, but I also don't want to rush into anything or be pressured into anything or do anything knee-jerkish because this is a scary prospect.  Rather, I feel calm and I'm going to continue to monitor things and find the right doc to help us figure this out.

I guess the reason that I felt like I needed to write this is because I often neglect to acknowledge the good. I am always searching for something I can wrap my head around while in the midst of the hard.  I find such valuable lessons there and am so grateful for the insights that come with the tough experiences.  However, equally important is to cherish the top of the hill.  I needed to write it down so that I will remember that we have seen some pretty incredible miracles these past months.  To someone else, they might seem like little things.  To us, they are the biggest.  Rather than let them pass and look for the next lesson, I wanted to write them down so I can cherish them a bit.  When the next make-me-want-to-puke hill decent starts, I hope I can remember that what goes down also must go back up.

Mamma Gut

This week has been intense.  We have been visiting specialists almost every day in an effort to figure out what is going on with our sweet Matthew. We finally have some answers...but I don't like them.  I'm trying to decide whether what I feel is more an issue of me not wanting to accept the truth or my Mamma Gut (note the capitalization--I give it the respect it deserves) screaming at me.

Matthew has been having a rough time as I explained in my last post.  We have been completely lost and unsure as to how to proceed with him--what else we could possibly be doing to help him progress, decrease his dysfunctional behaviors, and help our family life to improve.  It has been ROUGH and we feel helpless.  The week after I wrote that post, we fasted as a family for direction and help.  After that 24 hour period and some pretty intense, prayerful pleas, we started to just feel peace.  I can't explain it exactly, but Todd kind of led the charge of "it's going to be ok" and that overarching feeling of peace was obvious in his mood, actions, and kind of gradually brought mamma bear down from the ceiling of anxiety where I had been residing for the past few weeks.  Thankfully, we both knew that whatever came next, we were going to be just fine.  In fact, we started to feel like we needed to listen to Matthew more--let him lead this charge.  That feeling made no sense to me because Matthew is non-verbal and, as described before, pretty much just screams and scratches right now.  But I have learned over the years that sometimes those feelings that make no sense in the moment come to make a lot of sense later, so I should just accept, embrace, and move on.  So I did.

We met with the ENT and found out that nothing at all was wrong with his ears (inner, middle) and that his throat looked fine, but that all of the screaming might be doing damage to his vocal chords.  Since Matthew isn't aspiring to be a famous opera singer (that I know of), this did not stress me out.  I kind of said "darn" since I was hoping there was fluid or something in his ear that was causing him to scream.  What horrible Mother wants something to be wrong with her kid?  Sorry people...it would have been an easy answer and, given that we haven't had many of those lately, I was kind of excited about the possibility.  He did suggest that there might be something neurological.  I knew that in my heart, so I told him I'd already called the pediatrician for a referral to neurology.

Matthew's appetite continued to wane and his tremors and shaking along with waking up at night all continued and actually seemed to be getting worse.  We also started to notice that, in addition to looking sleepy, it was almost like he was losing consciousness periodically and would just stare off and be "lost" to us for 5-10 seconds at a time.  We took him to the pediatrician and there was nothing simple they could identify, so we kept plugging away with hope that this was simply a cold and would go away.  He still didn't perk up though.

Thursday morning of last week, I was getting Matthew ready for school and looked over at him.  He started to stare up and to the right and I had the distinct impression he was having a seizure.  I just felt it...knew it in my sacred Mamma Gut.  I sent him to school and, within an hour (I was mid-workout at the gym) got a call from the school describing "seizure-like activities" and expressing concern.  So here I am in the corner of the gym trying to keep my composure as Mamma Gut kicked in again and I knew there was something going on.  I got a call a little while later that day from the pediatrician ordering an EEG prior to our neurology visit.  OK....here we go.

Later that afternoon/evening, Todd called our pediatrician and described all that had been going on that day.  She suggested that we take Matthew to Randall Children's Hospital ER to rule out acute neurological degeneration and, if nothing else, expedite some of the tests that we knew we were going to need to do with him.  She was SO WISE--the ER visit was a total bust, but everything was put on fast forward at that point.

The following Monday, our EEG got scheduled and Tuesday I got a call from neurology offering us an appointment two days later.  Wednesday was the EEG, Thursday we would get answers.  That never happens!  To this impatient soul, that felt like a beautiful gift!  I started to be excited for these tests (again, who is excited for crap like this?).  I even started talking about what I expected from these visits: "hopefully we'll do the EEG and then she'll order an MRI or brain scan.  Matthew needs an MRI on his knee, so maybe I can coordinate the two."  I talked about it as though these tests were easy, normal, and logistics I just needed to plow through.  And I had very little anxiety about it.  In my head, I had already worked it all out.

Wednesday came and, shockingly, the EEG went great (relative to what I expected).  Matthew did try to rip off the wires, but only chucked the phone and actually hit me in the head once, did not scream and cry more than about 10 times (all short lived) and held somewhat still during most of the test.  He hated the strobe lights and I think that was when my noggin took a phone to it, but he managed!  I was sooo amazed, grateful, impressed.  I'm telling you, that idea of Matthew helping us to figure out what is wrong....started to realize that might actually be true.  Check!  EEG done.

Thursday arrives and Todd meets me at the hospital in Portland for the visit.  History--back in 2011, they suspected Matthew might be having absence seizures and had done an MRI and EEG, but the EEG was inconclusive (he wouldn't hold still) and they weren't sure whether the abnormal patterns they saw were actually significant.  Honestly, they had invited us to do further tests, but I did not feel the need and the spells we had been seeing all but disappeared (or I stopped noticing them).  So we are there with the same doctor and she has the new EEG.  We had a very logical and candid conversation with her about the results.  This is what she told us (and I'll have you know that I was able to repeat back to her exactly what I heard with total composure)--Matthew has epilepsy.  He is having a type of seizures called complex partial seizures that are starting from a specific place in his frontal left lobe.  She is concerned about the seizures and treating them, but also really wants to try to understand what is causing them--the why.  She told us that can be like searching for a needle in a haystack, but that she wants to try a few things...an MRI, genetic testing, etc.  We looked at the EEG with her and she showed us the abnormal patterns she was observing, saying this is not the worst EEG she has ever seen, but is about a 6 out of a 10.

In the MRI, we are going to look at a small cyst they discovered during his first MRI that is located on his left frontal lobe.  If it has grown and that is putting pressure on his brain, they might have to put a shunt in.  If it is the same size, we can rule that out as a cause.

We left the office.  I made it about three steps out of her office and the tears started to come. Matthew just walked beside me, holding my hand, and I held all the paperwork up in front of my face so that no one would see me.  I got to the car and the flood came...I called Todd and just sobbed and sobbed.  What I had been talking about--the tasks, the logic--all disappeared and all I heard in my brain is that my boy has epilepsy and something else to deal with.  Yes, it is treatable, but with meds that I don't like.  Yes, we have rescue meds if it gets bad.  RESCUE MEDS?!?!  He might need to be rescued?!  And if we don't treat these, they could get worse and hurt his little brain.  So I can't just go on pretending that it is OK and giggle as he stares off into space...and then say "OH!  You're back!" to which he responds, "AWAKE!" and we go on with life.  Now they are scary episodes of electricity in his brain that are hurting him.

I left that appointment scared and unsettled....big time unsettled.  I couldn't call my closest friends or even my Mom.  I couldn't talk about it.  I just thought and thought about it all the way home.  I cried and though and stewed and tried to make sense of why this was so hard--she told us things that we already expected and yet, somehow, it was worse than I expected.  And I DO NOT feel settled.  I don't think she got it right.

The next day we were at Shriners hospital with an orthopedic surgeon talking about Matthew's chronically subluxing knee cap.  And, as expected, we might need to do surgery and are going to get an MRI (yay! My logistics will still work out and we can get two MRI's while he is unconscious only once).  We also got a new brace.  It was a very successful, non-emotional visit.  The kind I like.

That afternoon, I knew I needed to talk to the neurologist because, no matter how much I tried to reconcile what she told me with my Mamma Gut, I was still getting chewed out by my insides.  So I called....and told them exactly what I felt.  They said to hold off on everything until Monday when I could talk to the doctor and I immediately felt this intense relief.  And then this weekend, I have spent quite a bit of time researching seizures and starting to realize why I feel so anxious.  What she has diagnosed him with is MUCH more serious than what I thought was going on.  Todd keeps making fun of me...reminding me that the 101 course I can get in epilepsy from the Web is a little remedial compared to the years of professional training and experience this very competent doctor has, though he totally supports me expressing my concerns and opinions.  Mamma Gut isn't claiming to have a PhD...I'm just convinced that we don't have it right yet.

If I find out that I am just in denial, so be it.  But I believe in the power of the Mamma Gut. If I found out that we did NOT, in fact, get it right and I save Matthew from unnecessary medication trial/error and possible set backs, it is totally worth it.  So the waiting game starts again.  We are hoping to talk to her tomorrow and I will post an update at that point, but today, I'm grateful for the Gut and am just going to hang out and wait....at least I'm not in my anxious stuck-to-the-ceiling space anymore.  Just a bit of a sad, slightly emotional, tender space as I grieve for the things that my Matthew is going through.  Autism is hard.  Poop problems are stinky and horrible.  And epilepsy in any form sucks.  BUT....he is still Matthew. And he isn't suffering (we might be a little, but he isn't) and for that I am grateful.

It's a Refining Race

Last night Todd and I were just getting ready for bed at around 11:30 when we heard a screech followed by a LOUD crash--sounded like it was just outside our front door.  We ran downstairs and out the door to see three cars, full of teenagers, laughing and talking loudly.  Laughing....seriously?  There was a crash...I knew they had hit something.  I see a bunch of our neighbors all walking out of their houses to see what had happened.  Our next door neighbors had just arrived home and witnessed the whole deal.  Apparently these three cars had been driving REALLY fast down the hill and around our corner.  One of them had lost control of the car, spun out, and the back side of her car hit a lamp post so hard that the entire top part of it (lamp and metal) fell off.  One of the cars tried to flee the scene, but they were reminded  by their friends left behind that "if you run, you look guilty!" So they came back.  The driver of the car that hit the post is unknown because there was a little driver switch-a-roo that took place immediately after the crash (witnessed by our neighbor).  The cops and fire engine came.  There was weed involved (shocking).  Whole thing scared the snot out of me because it got me thinking about our future--our kids will someday be teenagers and heaven help the teenagers that have to grow up in our pot-smoking, sex-craving, self-entitled crazy world.  Then I remembered something....I have a little one that will be protected from that.  Then I remembered something else....I have two that won't.

About 2.5 hours after this whole thing drew to a close, Matthew woke up.  He was wide awake.  I went into his room, after several minutes of praying he would go back to sleep, and tried to read with him, offer him drinks of water, and encourage him to go back to sleep.  He would have none of it and literally shoved and scratched his way past me to get out of his tent and escape (loudly) to freedom.  Several hours later, we went on a drive and it was foggy and dark.  I just drove because when we drive, Matthew is content.  We were listening to soothing church music and hardly made a sound.  I looked back and his content little face and blurry eyes and prayed that, when we got home, he would somehow go back to sleep.  No luck.

Maybe I share that to explain why, in my sleep-deprived and somewhat irrational state, I might be a bit more emotional than normal.  Maybe I share that because it is a small dose of our currently reality.  And, candidly, our current reality kind of bites. 

I wrote recently about our trip to CA over Thanksgiving and the flight o' torture we endured on the way back.  I attempted to describe some of the animal-like sounds coming from our child who we hardly recognized and the almost-frightening, inconsolable way that he freaked out during that flight.  Unfortunately, that proved to actually be a bit of a turning point in our journey--hopefully just a detour, but a turn nonetheless--and Matthew has been screaming like that, almost non-stop, ever since.  We have seen a different child since that flight and we hardly recognize the sweet, amazing, connected kiddo that we felt like we had before boarding.  Matthew has, instead, been aggressive, anxious, intense, easily frustrated, less verbally expressive, louder, and non-compliant.  He seems to target me the most and, honestly, it's more than physically painful to go through.  

I don't want anyone to know Matthew like this--I want them to remember the boy that I know he is.  But I want to describe this phase in enough detail that I won't forget it.  I want to remember what we are enduring right now so that I don't take our easier phases or an upward trend for granted.  Please, do not feel sorry for us--I feel like, lately, we have had a lot of people say how bad they feel for us, how hard it seems like our life must be, how sad it is to watch.  I HATE THAT.  Do not feel sorry for us.  Like everyone, we are struggling to navigate a difficult chapter and are SO blessed to be surrounded by people who love and support us through the journey.  Oh, how I wish I could support people the way that people support me!  But we are not depressed about our life...we are just trying to figure it out.  

My hands are cut--they have scars on them from where Matthew has scratched me and digs his nails into my hands and arms.  They are starting to heal as I'm figuring out how to "dodge" the scratching (I tried ignoring the behavior and not reacting, but let's just say that produced the majority of the deep cuts), but I bleed every couple of days from a scab he scratches off or a new cut he somehow sneaks in.  He is pulling my hair quite a bit. He scratched me right down the front of my face the other day.  He kicks, hits, and otherwise tries to communicate through aggression lately.  He has, soooo sadly, started to occasionally hurt an innocent passer-by--grabbing a girls locks in the hallway at church or school.  Poor Adi is lucky to have much hair left as she does seem to be another favorite target.  You should see our little fiesty ninja attempt to dodge him with a little aggressive display of her own.  Not something I'm proud of, but I have no fear that little girl can hold her own.  

The screaming--remember how in "Dumb and Dumber," Jim Carey asks at one point, "want to hear the most annoying sound in the world?"  Well, I think Matthew mastered it.  He has found a decibal that almost makes you cringe and it has started to take a toll on our kids--they often will end up in tears, plugging their ears, running away from him begging him to stop.  We also beg, but have yet to figure out how exactly to make it stop. 

Liam and Adi, bless their patient souls, have probably started to feel the emotional toll this is taking on us.  We try so hard to make sure they each feel like they are a priority so that Matthew's challenges don't somehow overshadow them or require more of our attention than is appropriate.  But they have had moments where I've needed their rescue--Adi holds Matthew's hand in the backseat and that display of tenderness reminds me that he still has it in him.  Liam will volunteer to "take Matthew" when he senses I'm going to lose it and plays with him in the sensory gym to give me five minutes to breathe.  But they ache too. 

We have known something is not right, so I have made an appointment with an ENT to check his ears to see if something ruptured or exploded or...well, anything!  I have an appointment with a geneticist to see if something else might be going on that we aren't aware of.  I am making an appointment with a neurologist to see if perhaps he is having seizures.  I have an appointment with an orthopedic surgeon because, in the midst of all of this, his subluxing kneecap has started to cause him pain and limit his activity.  And we just had an appointment with a psychiatrist to see if we needed to adjust his meds. 

We did adjust Matthew's meds, but they seem to have turned him into a zombie--he has been falling asleep at the dinner table, walking around in a comatose state with eyes at half-mast and drooling.  It makes me cry. I am the first to say that this scares me--drugging my child is not something I like to do, but I feel like the alternative is scary too.  The doctor put him on something specifically for kids with autism between the ages of 6-16 who are showing aggressive or anxious behaviors.  Sounds like a dream--not quite sure we have it right yet.  

Now, fast forward to today.  My sleep-deprived self got a hug from a friend in the hallway at church who just sensed, I think, the depth of my internal struggle.  Pretty sure I didn't really let on just how much of a toll this was taking on me, but she somehow knew.  She gave me a long, hard hug and I just lost it.  Tears with snot.  Unleashed the emotional beast.  And I haven't stopped crying since. 

I realized what sucks about this whole deal--I feel like we are running as hard as we possibly can, searching for answers and explanations, and we probably won't ever "arrive."  And I think that sometimes we just increase the speed at which we are running to mask sadness that we aren't sure that we will ever find what we seek.  It almost makes us feel better to be doing SOMETHING.  But the truth is, perhaps we are doing the wrong thing.  Todd and I both felt so strongly today at the same point in the day but in completely different places, that we need to be asking God what to do for our son....and we keep asking each other, our friends, ourselves.  We are working our tails off at taking stabs in the dark.  

So I came home today and prayed my guts out.  I realized that I needed a little Divine guidance to figure out what we are supposed to do to re-discover our Matthew.  And what I felt I desperately need the most is a glimpse if my sweet little boys soul--who he REALLY is and has the potential to become.  He is mine forever and I believe he picked Todd and me because he knew we would see him for who he really is.  But my vision is so clouded by the screeching and scratching right now.  I have to get back to the point where I can see even a glimpse of who my Matthew is.  He is not defined by autism, by his cognitive limitations or by his behaviors.  His spirit is whole and I want to see that.  I believe that God can give us those glimpses if we are looking for them.  I have had those moments before--where I look into his eyes and just feel like he is 100% there, with it, knowing, understanding.  

I used to long for the day when Matthew would talk or when Matthew would this or that.  I've realized that none of those things really matter.  Matthew will become exactly who God intends him to be. Todd and I are along for the ride, to learn, grown and hopefully change because of this amazing soul.  But this part of our journey is perhaps the refining phase.  We will keep running (because that's what we parents of kids who have special needs do), but I'm committing to be more purposeful and to try to do it with a heart more full of faith.  I also need to remember that I'm not doing this for answers to satisfy me.  I'm doing this to help Matthew become the best person he can.  It changes the mission a little and, hopefully, will afford me the glimpses I need of my boy so that I can "endure well" rough days like....well, the past 65. :-)