The Light At The End Of The Tunnel

I keep willing myself to write here.  I’ve started and stopped and started and stopped, over and over.  I can’t find the words this year. 

August through February were a bust for Coleman - but looking back now I see he recovered from it better than I did.  The tremendous struggle we dealt with, the surge of anger and aggression that lasted literally 6 months, left me in a place full of doubt and despair.  His OCD surged to new heights, and he became drastically rigid, unable or unwilling to move off of thoughts in his head.  He would not engage in simple things he had loved in the past, and even when he did, he did so unhappily and only to finish the routine and then slide back into his own thoughts.  We were alternately trying to engage him or trying to stop his sudden aggression over something as ridiculous as turning off the pantry light.  School notes indicated the same thing was occurring at school.  It was exhausting for all of us. 

During this time, I went to a clinic meeting at his school.  Before going to watch Coleman in action, I met with his team.  They talked to me about his general state over the last several months.  They were concerned about the resurgence of behaviors and combined with his growth, they wanted to create a new behavior plan.  His plan at that time involved a ‘calm down’ routine at his desk (doing puzzles) which worked well when he was at his desk, but they were seeing his behaviors in places like the gym or the caf, and getting him back to his class to perform the ‘calm down’ routine was growing increasingly more difficult.  We’d like you to think about our use of a safe room from Coleman, they said.  They kept talking, slowly, gently, knowing this would be a difficult conversation.  But the words safe room were echoing my head and I heard little else, my mind mentally scanning pictures of what a safe room looked like and absorbing what that implied.  I swallowed hard.  I felt like I might faint.  This is not Coleman, I said.  He is not like this, I said.  But the behaviors had been going on for several months by this point.  The rest of the meeting was uncomfortable for everyone, and Coleman’s angry stance when we finally went to watch him didn’t help alleviate the tension.  In the car, I sat and thought.  A safe room.  For my boy.  My God, what was happening.  That moment, right then, I started to lose hope. 

When you have nothing else, hope is an amazing little treasure.  It powers you on when the odds are against you, keeps you motivated through times of doubt, and keeps that tiny light at the end of the tunnel shining enough to keep you moving ahead.  Losing hope was not something I was prepared for.

A few weeks later, a note in Coleman’s backpack informed us that he was starting vocational evaluations.   At his school the vocational program includes teaching office work (shredding, folding letters and stuffing envelopes, sorting mail), hotel work (the have a mock hotel room to help kids learn to make beds), laundry (they have fully functional washers and dryers to teach kids how to do laundry and fold clothes), line assembly (simply taking items from larger piles and putting those into small packages);  they even have an in-house store where kids learn to bag groceries, ring on a cash register, and stock shelves.  It’s really an amazing program and honestly was one of the primary reasons we chose this school.  So I guess somewhere deep down I knew Coleman would eventually be on this path.  But the funny thing about having hope is that you believe in the impossible.   You believe things can change somehow, and I guess I put the whole vocational track thing out of my mind because the note that come home that day hit me like a truck.  Accepting that it was time to start down this path felt like conceding the race before the votes were even counted.  That night, as I lie in bed, I kept thinking about the prior five months, thinking about the behaviors, thinking about the safe room, thinking about vocation training.  I finally feel asleep and when I awoke, I realized the rest of my hope had silently and without warning disappeared.  It’s been an empty few weeks.  I think this why I have been unable to write this year. 

You would think I would be used to all of this by now.  Autism and all its glory.  You would think that the trials along the way would be scarcely a bump, that I could cross my arms defiantly,  point my head to the sky and with a dramatic flair exclaim “No Big Deal! This does not bother me at all!  I am resilient!  My faith is unshaken!”

But truth be told, there are many, many days when that is not the case.  I think more often than not, parents of special needs children (including me) are gasping for strength, holding back tears, frustrated and tired, and praying to God to please, let this change.  Please, let us have a different outcome.  Please, give us strength.    This road is not easy - let no one tell you differently.    All the feel-good stories, including our own, can’t mask the underlying heartache that goes hand in hand with autism.  

But, fortunately for me, God must be sick to death of hearing from me, because over the last couple of weeks I have been feeling stronger.  My mojo is coming back and I’m ready to fight again.  You’ll be happy to know I am done feeling sorry for myself.  Coleman seems to have rebounded nicely from the sharp setback we had this year - it just took me a heck of a lot longer to get here.  

So here we are, moving forward.   We really are very grateful for any opportunity Coleman has to improve his life, even if its shredding paper.  And we’ll keep working for more, keeping hoping for more. Because for my boy, the words "I give up" will never cross my lips. That tiny light at the end of the tunnel is shining again.