Wednesday, May 27, 2015

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.'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.