Monday, December 1, 2014

Love the Kid, Hate the Autism

Usually I wait to post until I have some kind of an "ah ha" moment or insight that has come of an experience.  But I am not yet to that point.  No insight, "bright-side", epiphany, learning, or lesson to share.  In fact, just a poopy story.  Well....not literally (though you know I have plenty of those for real).    Poopy in the figurative sense.

We decided to take a trip to CA to be with Todd's sister and her family for Thanksgiving.  It was an incredible trip....the kids all had a great time, Todd and I got a little time to be humans (I got a nap one afternoon!!!), and we even had some little victories with Matthew.  We took him to a football game and not only did he NOT freak out....he spent 50% of the game cuddling, giving loves, hugs, talking to me, etc.  It was beautiful!

I was super impressed with each of the nieces and nephews as they would seek out Matthew and interact with him in such mature ways.  They range in age from 8-15, but their willingness/desire to spend time with my son brought tears to my eyes a number of times.  They rejoiced in his little successes, wanted to sit by him, would follow him around, participate in his activity choices, and just plain loved on him.  It was a gift.

If only it could have ended on that high note, but alas...all good things must come to an end.  I'm just disappointed this one came to an explosive halt instead of a coasting conclusion.  We boarded our plane around 10 this morning and, because I had chosen to sit with Matthew on the flight out, it was Todd's turn.  We pre-boarded and buckled him into the last row of the plane, as we always do.  Liam and Adi sat in the next row up and I joined them in the aisle.  Because this was a completely full flight, the seat next to Todd and Matthew was taken shortly thereafter.  When dude sat down, Todd and I both warned him that Matthew can be a bit unpredictable on flights and is often noisy.  He assured us that was no big deal--he hadn't been on a flight for 12 years and was more anxious about that than he was about our son's potential volatility.  Well, I don't think he, nor we, for that matter, were prepared for what happened next.

About 15 minutes into the 90 minute flight, Matthew flipped out.  He started to scream like we were stabbing him, sobbing loudly in between screams, kicking the seat, kicking Todd, flailing his arms, and behaving almost like an animal.  After Todd handled it with total calm and control for 30 or so minutes, I offered to switch.  Matthew immediately started going for my hair-yanking it, clawing at my face, kicking me in the legs and side, and continuing to scream.  After more than an hour of this, we offered to have dude switch with Todd (who was now sitting with Adi and Liam) so that he didn't catch any accidental blows.  He was leaning away from me at this point, turning his back as much as possible, and attempting to avoid eye contact.  When I looked at him, I knew he was a bit traumatized by what was happening.  When they switched places and Todd came to sit by me, we tried everything we could possibly think of in tandem to settle Matthew--counting on our fingers, singing, headphones, music, phones, iPad, books, food, candy.  We were at a total loss.  That feeling of total defeat and claustrophobia combined with embarrassment and anxiety for those around us who were surely also feeling stressed got to me and I started to weep.

Todd took Matthew to the bathroom to distract him and I just sat there shaking with sobs, mortified at my weakness, and desperate to avoid anyone noticing.  A sweet flight attendant just handed me a box of kleenex and walked by with a compassionate smile.  And a guy in the row next to us, rather than avoiding eye contact as I sat there with tears streaming down my face, sought my eyes and just said, "we all have bad days!  Even adults. Poor guy....he is certainly having one now, but that's OK!"  Of course, his compassion started a new wave of tears.  He was so sweet and, not for a moment during the rest of the flight did he attempt to avoid looking/staring.  Rather, he would look right at us and offer assistance, including asking if he could help us deplane.  I was so touched by his desire to help, though there was nothing he could do.  He was just so sincere about it.

Fast forward...the madness continued for the rest of the flight.  I mean, not a moment of reprieve.  People who are waiting for the restroom are staring with looks of disbelief on their faces.  I caught one woman's eye and attempted a feeble "sorry!" but she looked away immediately.  I was devastated....I guess I was, in my heart, just pleading that those around us would feel patience and compassion for the situation.  Anyway, we finally land, and the plane is stuck on the tarmac inches (so it seems) from the gate for another 20 minutes.  Todd and I wanted to throw our children out the back of the plane because now, all three are a wreck. Instead of helping, Adi and Liam have started to fight next to our traumatized friend and, much to my dismay after watching his continued body language of total avoidance, Liam starts pushing Adi into this guy.  Todd tries to make jokes and employ this guys help in some tiny way, not realizing that dude was completely fed up with us.  While we are hanging out on the tarmac, Matthew still screaming loudly, dude gets on the phone and, with no attempt to hide his comment, starts apologizing to the person on the other end for the "very very loud kid on the plane."  I was so spent at this point that, rather than ticking me off that he would be making thoughtless (I'm sure not malicious) comments like that while we are very clearly within ear shot, I just started to cry again.  Of course, our sweet friend across the isle notices and just shoots me looks of compassion.  It was interesting...Todd pointed this out to me.  We both expected dude that sat next to us to be super nice and understanding because of how he looked.  The guy across the isle looked a bit more "hard"--lots of tattoos, kind of a stern face, tough guy body language.  We were kind of nervous that he might be a bit less sensitive to our situation.  Shame on us for labeling or pre-judging.  We were wrong.

We finally deplane and, while we are getting our luggage, Todd overhears a conversation traumatized dude is having on the phone with someone else, reinforcing our perception that he was, in fact, completely horrified by the events he witnessed.  He made comments like, "I've never seen anything like it in my life!  He was so completely out of control and wild!" He called him a "barbarian." On and on he went, talking about my son, not as a person, but with amazement and shock at what he had just witnessed.  It was as though Matthew was something incredible he saw at the circus that freaked him out.  My son.  My Matthew.

I chose to approach him after Todd overheard that.  I told him how sorry we were that the flight was so difficult and offered to explain.  He tried to brush me off, but I said that I wanted him to know that Matthew has autism.  This isn't a typical child...this is a kid with challenges.  I told him that some flights are harder than others and I was just so sorry that he had to go through that.  He was kind enough to say that we seemed like "really sweet people" but that it was an early flight and he hadn't flown in 12 years, so he it was a bit hard for him.  He did say he had a brother with a son who has autism, and was obviously embarrassed when I pointed out we had overheard his conversation and knew he was a bit shocked by what he had seen.  He was kind about it, but the way he chose to talk about it the minute he thought we were out of ear shot was crushing to me.  It made me think, however, about the times that I have done something similar...seen or heard something and been anxious to grab my phone so I could call my husband and rant/rave or whatever about the experience.  We are all guilty, so I certainly don't blame him.  Just hurt my feelings when we overheard.  I love Stephen Covey's philosophy of "never say something about another person you would be ashamed to have them overhear."  I'm not perfect at this, but after Todd's "fly on the wall" experience, it was a good reminder of just how hurtful those behind the back comments can be.

All day I have walked around in a bit of a funk.  PTSD, perhaps.  I keep thinking about the child I sat by in the plane and trying to reconcile who he was with the Matthew I know 90% of the time.  This is the part of autism that is the scariest.  But it is part of autism.  You never know when a day like this will come and attack you (because it does feel like an ambush when these days occur), and you can never be fully prepared for it because you just plain don't know what the "attack" is going to look like.  It is the disability that keeps you on your toes...guessing, a little anxious and fearful of what might be next.  I have been on the verge of tears every time I have reflected on our experience too, largely because I didn't know how to handle it.  I was scared, overwhelmed, hurting in my heart for this sweet boy who was acting as though he was completely out of his mind.  I did not know what to do.

I still don't know what I will do next time that happens.  I'm not sure how I am supposed to handle this. I don't know what triggered it and keep racking my brain for ideas.  I don't know how to avoid it in the future.  I am scared to fly ever again.  I'm frightened that this might happen a place where it freaks other people out and how do I, as his mother, help others to know how to respond if I am at a total loss myself.

I feel ill-prepared to parent a child with autism.  I don't like that feeling at all.  I love my him with all of my heart.  But I do not love autism.  I love what it teaches us, but I do not learning these lessons sometimes because they hurt.  I face where he scratched me, my hands where he bruised me, my shins where he kicked me, my hair where he pulled it out, my head from the screaming and most of all, my heart.

We all have hard days.  I'm going to chalk this up as one of those and just pray that tomorrow is better.