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.

School, Redux.

So when things started to go south a few years ago with Coleman in school, when he became hyper-rigid, when his behaviors began to escalate, and when he was ‘suspended’ from his k-2 program for several days until they could figure out how to handle him , we started to consider if it was time for a change for Coleman.  We assembled an outside team, consulted with doctors, and had Coleman’s neuro psyche evaluation done, the first and only re-evaluation we had done since he was diagnosed with Autism almost five years prior.

Aside from learning over again about Coleman’s significant deficits, we learned more about the type of program that we were told Coleman would benefit from.  They strongly suggested a strong ABA-based program with a low staff/student ratio, with discreet trial teaching.  The program should be flexible to enable opportunities to generalize skills he learns at the desk into a broader environment.  But in addition to explaining the type of program that was ‘right’ for Coleman, we also sensed a strong level of disappointment from our team of doctors and advisors about the lack of services Coleman had received.  The theme penetrated our feedback session, with several discussions and commentary about what SHOULD have happened.  I couldn’t help but feel partly responsible.  I should have pushed for more services.  I should have pushed for different services.  I should have worked harder with him.  Oh the list could go on and on.  But as you all know, Coleman’s battle with Leukemia in the years prior left me protective and really, all that stuff seemed so unnecessary at the time.  I just wanted my little guy to have a break. But after the doctor's comments, I found myself wondering What Might Have Been.

So as we began to figure out a suitable education setting for Coleman, I tried hard to not think about the past, and instead focus on the future.    We sought out programs that fit the doctors’ recommendations.   And when we found the right place, I knew it.  Soon enough, I found myself getting hopeful.  I started to think again about Coleman’s future.  I started to think about what he was capable of achieving.  And I started to get excited.  With the right program, I told myself, things will be different. 

I remember telling my mother “This isn’t forever.  This will be for a year or two.  Then he’ll catch up and we can bring him back to the middle school.”  She just smiled.  “That would be nice” she said.   I could sense her doubt.  “One day at a time” she said.  But she was too late with her warning.  I had already skipped straight past doubt, and landed head-on in Unrealistic Optimism.  My mind started to hyper-focus on catching up, and somewhere between “the kind of program he should have had” and “the kind of program he will have”, I managed to arrive at full recovery.  With all that ‘right’ programming that he would now be getting all day, well, surely my brilliant little man will snap right out of autism and land squarely in the land of typical ten year olds.  I could almost see him playing baseball.  I could feel it.  It was close. 

And so we began at the new school.  They offer clinics monthly to come in and view your child’s progress.  Our first few clinics were initially reviewing videos of Coleman during his day at school - he was not yet at a place where he would have cooperated with me in the room.  But soon, he was ready and I would spend a couple of hours watching him go through his programs.  It was heavenly to see him so happy, so adjusted – it was a satisfying redemption after the first awful few months of school.  He quickly answered some of the questions his teacher asked, but stumbled over others.  And as I watched him struggle with some of the same things he’d struggled with in the past, ‘more time’ is what I thought.  He needs more time.   

Until one day, a year and a half into his new program, I found myself walking into another clinic meeting.  At this point, he’s doing really well in school – all reports are perfect.  He’s happy and adjusted.  No behavior problems.  I observed him for almost two hours.   His teacher starts with some safety information.  She asks him his name.  He answers correctly.  She asks him his Dad’s name.  “Coleman” he responds.  She asks again.  “Bill” he answers correctly and earns his token.  “Where do you live?” she asks.  “Nashoba” he answers.  “Where do you live?” she asks again.  But Coleman is staring away, not listening.  She removes a token.  “Where do you live?”  Coleman scripts a few lines from one of his favorite shows and then looks at me.  He smiles.  He has a beautiful smile.  “Coleman, where do you live?” she asks him again.  “Hingham” he answers, still smiling at me.  And he earns his token back again.  They go through several different programs he’s working on.  She lays out a group of six small pictures.  “Coleman, can you give me the three pictures of food?”  He looks at them all, but doesn’t respond.  She asks again.   He looks over the pictures and eventually picks up three pictures.  “Great job!” she tells him and then asks him what the foods are.  He stares for a minute or two, and then says “food.”  She pushes him for the names of the food, but he can’t come up with oranges, cereal, or goldfish crackers.  They go through some sight words too.  I know he can read most of these but he is staring off again.  “Coleman, give me the word ‘my’.”  He picks up the flash card with the word “my” on it and hands it to her.  She asks for another but now he is back to scripting.  He has hand in front of his face like he’s talking into a walkie talkie and recites a full three minutes of The Backyardigans.   For his breaks, he takes me to the library and then the gym.  He laughs as he pushes the scooter from one end to the other.  We head back to the desk for more work.  His performance is, at best, inconsistent.  

I thank his teacher and team leader for the meeting and walk to my car.  I drive the entire way home in silence thinking.  And thinking.   Later that night, I sit with Coleman at the small table in the playroom.  “Coleman, where do you live buddy?  I ask.  “Coleman” he says.  “No, where do you LIVE?” I ask again, emphasizing ‘live’.  He smiles his beautiful smile at me.   I ask him again, “Where do you live?” “Fennelly” he answers.  I stare at him for a few seconds.  I start the answer for him.  “I live in…” and I wait.  He smiles at me again.  “Hingham” he finishes.  

  

In bed that night, I think over and over about Coleman.  And I have myself a nice little cry.  It's the same one I’ve had many times before when I realize things are not going to work out for Coleman quite the way I had hoped.  But it’s all ok because living with autism means constantly reassessing and re-setting priorities.  It means learning how to cope with the sadness and figuring out how to turn it into something meaningful.  So these little cry sessions of mine are not in vain.   

I realized that day that not all programs work for all kids.  And everything that those doctors had said about what Coleman missed by not being on the ‘right’ program was maybe only part of the story.  Sure, maybe a different program might have helped some.  But Coleman is who he is, and there is no program – not even ‘the right one’ - that will make Coleman ‘not autistic’.  The ‘right’ program I know now will capitalize on your child’s strengths, and find ways to work in spite of his weaknesses because not all weaknesses will be overcome.  The ‘right’ program will focus not just on gaining skills, but having fun too, because even the least functioning of kids needs to find joy in his day.  The ‘right’ program will keep your child safe, and will love him too, because it’s about more than just a day at school.  For kids like Coleman, it’s about learning to live with Autism, not without it. 

Coleman’s in the right program.  It was me that needed some adjusting.  

School

School

We finally, reluctantly, made the decision to move Coleman to a new school.  He transitioned at the end of last May, and now, nearly a year later, he is adjusted and doing well.

The change was hard for him, hard for us, and I know hard for the wonderful folks he left behind.  His last day of school at East is one I will forever cherish. 

I had asked his teacher at East to make for him a social story about the going to a new school.  She did it perfectly, and sent it home the following day.  That night, I read through it alone and cried.  “In 10 more days I will be going to a new school.   I will miss my friends and teachers at East school but I will have new fiends and teachers at my new school.  My new teachers names are Maggie and Sam.  In Ms. J’s class I did work and played with puzzles.  In my new class I will do work and play with puzzles.  My new school will be great!”   There were pictures of his current school and his new school, pictures of Ms J and the kids in his class, and a picture of his new teachers.  In my head I could see Ms. J putting together the pictures and the story, trying her best to make this confusing change simple for Coleman.  I know she cried too, putting it together.

We read him the social story every day, several times each day for the 10 days leading up to his last day.  He was somewhat uninterested as we sat going through it and I wondered if he understood what we were trying to tell him.  I realized later that he hadn’t. 

For his last day at East, I had asked if I could come in early to gather his things.  I wanted to bring some snacks for the kids and some small momentos for his teachers.  I also was worried about how he would be on that last day so I wanted to be around.  And I really wanted to say goodbye and thank you to everyone.  I arrived at the school around 12:30, and went to his classroom.  Normally a quiet place, each child working with a para or an aide, the room was a bustle of activity – I could hear the commotion out in the hall.  As I entered his class, I saw a bunch of kids gathered around Coleman, laughing and talking to him.  I went over to Ms. J.  She said a lot of the kids from the other grades had been stopping by to say goodbye to Coleman.  Coleman loved it.  He was smiling away at all the kids, albeit confused about why they were all saying goodbye and good luck.  As soon as that group left, more came.  And again after that.  And in between, teachers and aides and admins floated in.  “It’s been like this all day” said Ms J.  Just about everybody who knew Coleman or who had worked with him had stopped by.  It was as loving and heartfelt a tribute as I could have ever hoped for.  And while it may have all been lost on Coleman, it certainly wasn’t lost on me.   These people who had taught and cared for Coleman for the last 8 years, who had made accommodation after accommodation for him throughout the school, who had watched him grow from a tiny bald 3 year old with cancer to the small but strong 10 year old he was now, had all grown to love him.  It was a tough day for everyone. 

He started the following week at his new school.  Please, God, let this be the right decision, I prayed. The first day went amazingly well.  And when we got home, I understood why.  “Go see Ms. J tomorrow?” he asked with a big smile.  “No buddy, remember you’re going to a new school now” I said as I reached for the social story.  His hand grabbed mine before I reached it, stopping me.  “10 more days?” he asked.  He asks this any time he wants to know when something is ending or coming up.  For example, if he knows he has gymnastics coming up, he’ll ask “10 more days then gymnastics?” and I have to just put in the correct number. “3 more days to gymnastics!” I’ll tell him.  So when he said “10 more days?” I knew what he wanted:  how many more days until he could go back to East.  It was so sad.  I knelt down beside him and said “we aren’t going back to Coley’s old school.  Coley has a new school now.”  He just stared at me, and then said “10 more days?” 

The next day was colossally worse.  His new school was trying to break some OCD behaviors (rightly so) from the start, and Coleman figured out quickly that this was the real deal.  The aggression and tantrums escalated as expected.   By the end of the week, Coleman was exhausted.  He stood in the playroom staring at the T.V.  I walked in and knelt beside him.  “10 more days?” he asked as he started to cry.  Oh God, the pain.  I hugged him and tried not to cry too, and said only “I’m sorry you miss your friends.  I know this is hard. I love you” and I hugged him and he cried gently in a way I had never heard before. 

Things, thank God, have improved since then.  He is wonderful, has completely adjusted, and likes his new school.  It was the right change, but it was goddamn hard.  Coleman still remembers his friends from East, and we hear their names in his scripts every now and then.  In a few weeks we’ll be doing an athletic program for special needs kids and some of those kids and Ms J. are going to be there.  I told Coleman about it a couple of days ago,  and he’s been excited ever since.  Every couple of hours he smiles and says “10 more days for Ms J?”  J    It’s going to be a nice little reunion. 

Coley's First Year in School (Pirate for Halloween)

Coley's last day at East