Skiing

Day 17:  Skiing

As the nice weather finally seems to be settling in, we are packing up our winter belongings, moving the winter coats and boots to clear room for spring jackets and flip-flops. From the shed, we swap out the snow blower for the tractor and winter sleds for beach chairs.  The final move is the ski bags, lined neatly up along the wall.  One for each of us, and this year for the first time, one for Coleman.

Skiing is one of those things that I assumed Coleman would never do.  Hugely outside his comfort zone, and aside from the obvious clothing issues, Coleman also lacks the physical strength required for skiing.  But then I bumped into my old childhood friend Michele a couple of years ago.  We were both at an information session about the new ARICA laws that had just been passed in Massachusetts relating to insurance coverage for ABA therapies for children on the spectrum.   She was there for her own son, a teenage boy with Autism, and we ended up talking after the session ended for over an hour.  She was funny and smart, and knew a lot more about Autism and services than I knew.  We talked about her son and Coleman, sharing stories and laughing at how funny these boys could be.  We made a plan to meet up again, and as we reviewed possible dates, she commented that most of the following winter weekends she was not around because they had a ski house at Loon Mountain.  “Does Coleman ski?” she asked.  I laughed out loud.  “No.  He doesn’t ski.  But Billy and I do, and the girls do, so maybe we could meet up sometime up there.”  “Have you tried to get Coleman skiing?” she asked.  Lord no.  I told her he doesn’t particularly like the cold.  And he doesn’t wear things on his head.  Or boots on his feet.  Or mittens on his hands.   She laughed.  “You get him to Loon, and we’ll get him to ski.”  She told me about a place called New England Disabled Sports (NEDS) located at Loon Mountain where her own son had learned to ski.  She talked about how amazing the place was, that her daughter and husband were now both coaches there, and how much they all loved it.  “Think about it” she said.  “I will” I agreed, thinking to myself that will never happen. 

The following winter, we were planning a short trip to Loon over school break for the girls.  We were going to leave Coleman home with our nannie Auntie Sue. Coleman loves her and she is incredibly good with him.   We would be gone only two days.   But I hated to leave him – hated to go have fun and leave him at home.  This is one of the difficult parts of a child with Autism – doing things as a family are almost impossible.  Going to a movie, going on a bike ride, lots of things - one of us always stays with Coleman, while the other goes with the girls.  I hate the separation, hate that Coleman can’t participate in so many things we want to do.  Which is why I try whenever possible, to take him with us.  As our short trip to Loon neared, I started thinking about what Michele had said. Crazy, I thought.  He’ll hate it.  He won’t be able do it.  But I kept coming back to it, so I sent her a text inquiring a little bit about it.  She jumped right on it, encouraged me to go, and put me in touch with a guy named Jack who ran the program for years.  She assured me it would be fine, and as I hung up, I thought maybe, just maybe this would work.   

I called NEDS and talked to Jack.  He was an incredibly nice guy.  He told me details about the program, the volunteer coaches, the supportive parents, and of course the countless children that had successfully gone through the program.  He was optimistic, I was doubtful.  “Come.  Let us try.  Let us show you what we can do.”  And so, against my better judgment, I signed him up for 2 days.  And then I worried for 8 more days until we left. 

We set our expectations low, and tried to do the same for the girls.  As soon as we told them about it, they were as excited and nervous as Billy and I were.  “This is going to be great. He is going to do great!” from one;  “This is awful.  He will hate it.  Don’t make him do this!” from the other.  So we all tempered our expectations, hoped for the best, but expected the worst.  For Coleman, we made a small story board with pictures of boots, helmets, skis…and we talked and talked and talked about it.  He was actually quite excited about this ‘ski’ thing. 

When the morning finally arrived, I dropped Billy and the girls off at one side of the mountain, and Coleman and I drove to the other side where the NEDS building was located.  I was nervous.  We opened the side door to enter and I was stunned at the number of people…there were at least 100 people.  There were amputees, blind people, children with Down Syndrome, and of course other children with Autism, everyone bustling about, grabbing skis, meeting coaches, and getting dressed.  The first thing I noticed was the everyone was excited.  There was no one there having a hard time adjusting and I looked down at Coleman and suddenly felt badly.  He was not going to like this, and it was going to be a disaster.  As the crowd thinned out, I started having second thoughts, but as I turned to leave, a big voice called out “You Must be Coleman!”  It was Jack, and he came over and warmly introduced himself and knelt down to Coleman and talked to him, told him they were going to have fun today.  He introduced us to Coleman’s coaches – each child is assigned two coaches for each lesson – and they began asking questions about Coleman and what might help them through the lesson.  I told them that we probably wouldn’t even get the boots on him, that would be a struggle, but to me, that alone would be a success.  Baby steps were ok with me and I wouldn’t be disappointed if it didn’t work out at all.   “At least we’ll have tried” I said.  After we talked for a few minutes, they told me it would probably be easier on everyone if I left.  I knew this – Jack had already told me this on the phone - but I had never left Coleman with complete strangers.  Even with school, he had known the teachers first through home services before he ever went to the school.  And suddenly the idea of leaving him was heartbreaking.  He wouldn’t understand where I was, why I was leaving.  I could feel my throat tightening, and I was trying not to cry.  I am not good in these situations.  As if you hadn’t figured that out by now.  I was looking at the wall – I didn’t want Coleman to see me upset – and a woman came over to me, introduced herself, and said “Come with me.”  She held my hand and took me around the corner (with Coleman following me) and introduced me to her son John.  He was 13 years old and had Autism.  He was all dressed to ski, and was waiting patiently for his coaches.  She told me when they first came to NEDS four years prior, John lay on the floor, screaming and crying, not wanting any part of skiing.  And now, when they tell him that they are going skiing, he is the first one in the car.  “Give it time.  He will grow to love it.”  I was grateful –this definitely made me feel better. I thanked her and brought Coleman back to his coaches – one was a doctor from Children’s Hospital, and one was a retired mom.  The retired mom looked at me and said “I have four children of my own.  I have 2 grandchildren.  I know what this is like and I promise, I will not let anything happen to him.  He will be fine.”  She took my cell number and said they would keep me up to date on the progress.  “Go get a cup of coffee.”  I turned to Coleman and said “I have to go to the bathroom.  You ski with Mark and Anne and then I’ll come back!”  I tried to sound happy even though I was dying inside.  He looked at my concerned “Where is mama going?” he asked.  “Just to the bathroom. You ski and have fun and I’ll be back!”  I had to look away, and I walked outside and cried feeling like I had just abandoned him.  I stood outside that building waiting and waiting for what seemed like hours, but after what was just 20 minutes my phone buzzed.  I looked, expecting a text saying to come back, that it wasn’t working.  But instead, the text was titled “Success” and featured a picture of Coleman with the boots on.  I could not believe my eyes.  “Working on skis now” the next text said.  And shortly again, “Success” and a picture of Coleman with skis on.  Words are inadequate to express my shock.  Truly, it would have been fine if we ended right there, this was so much more than I ever expected.  I was so excited I was literally grabbing random people as they passed, wiping the tears away, saying “Look!  He has on skis!!!”  They thought I was crazy but I didn’t care.  Hidden there beside the building, excited as I could possibly ever be, I stood and watched them bring Coleman out on the skis.  He couldn’t see me, but I had a perfect view.  Oh, these coaches were wonderful with him, tenderly holding his hand, talking to him, laughing and cheering him on.  They were genuinely interested in Coleman’s success.  He made it not only through that first lesson, but actually went back again after lunch for another 2 hours.  It was simply unbelievable and if you know Coleman, you know what an outstanding achievement this was.  It was all I talked about for weeks.  Literally. 

This year, we were determined to give him more time at Loon and at NEDS.  We rented a place at Loon for half the season and talked a lot about it to Coleman ahead of time.  The first day back, upon walking into the NEDS building, the ever-so-friendly staff and coaches all yelled “Welcome Back Coleman!!”   God it made me feel wonderful.  These special people, so warm and welcoming to my little guy, how could I not love it here?  It is what draws you back, this inviting and kind group of people – from the coaches to the staff to the other families – all one big family.  We met Coleman’s coaches, picked up his skis and he turned and said to me “First you ski, then mama will get you.”  Right out of the gate, he was ready!!!   I said “Great job! You are amazing!  Have fun and I will be right back!!”  And I left and didn’t even cry J 

After the first few days, we hit a road block.  Several factors played into it, including the very cold weather, a pretty big wipe-out for Coleman, a different lunch drop-off, and a shorted break time.  All combined on one day and suddenly Coleman was done with this skiing thing.  He started to yell, scream, fight, wanting no part of it.  We took him home for a few days to regroup.  But when we came back, it was more of the same.  I was sitting in the NEDS building trying to put on his ski boots which he hated.   And he was kicking me, pulling my hair, yelling.  It was awful – he had never pulled my hair before.  I was trying hard not to give in – trying to get past this break – because we had made so much progress…I couldn’t let it slip away.  But he was difficult, and the screaming and hitting moved next to his coaches.  I felt awful for them, and awful for Coleman.  It went on again for the next few sessions and skiing now became stressful and anything but fun.  The objective had been to have something Coleman could do outside with us, having fun, and not inside watching T.V..  The objective was not to torture him.  And we had been so close before - he had tolerated it well, maybe even liked it - until that fateful day.  And now it was awful.  I felt so deflated from the high, and was embarrassed by his awful behavior.  And I was tired from the fighting.  I was waning.   Jack came over to me – he could see I was upset.  “Don’t worry.  This is a bump in the road.  All kids have one.  He’ll get past it.  Nothing he can do or say will be new to us here.  We’ve seen it all.  Just don’t give up.”  Jack had called Michele and she called me.  She reassured me that they all have bad days, her son went through a similar phase, just hang in there, give it some more time.   She invited Billy and I to come out and meet some other families involved in NEDS.  We did, and they were all wonderful.  Michele’s husband said “When Jack learned to ski, and started to like it, it was life-changing.  We thought this is something we can all do together.  We bought a place up here, and have been coming ever since.”  He said he had seen Coleman’s behavior that morning when he was in the NEDS building.  “I remember those days like they were yesterday.  It’s not easy, but it gets better.”  The encouragement got me to continue the next day, but Coleman’s anger and frustration lasted through the next 2 lessons, and I was thankful we were heading home.   We had one final lesson before the season ended and it went ok – not great starting but he finished strong. 

It’s hard to know what do in times like this.  I’m not looking for him to be a ski racer of course.  Bunny hill all day is good for me.  I love that its physical – exercise and strength building is something he desperately needs.  Do we push him, hoping that he will grow to love it?  Sometimes children on the Spectrum push things away, say no or that they don’t like it, simply because it is unfamiliar.  Maybe Coleman needs more time.     Or do we call it quits, announce defeat and let him be?  I hate to walk away from this thing that is possible, this thing that he can do, this thing that could be amazing if he would just let it.  The verdict is still out.  Maybe one more time or maybe just call it a day and move on.  At least we’ll know that we tried.