Success Story: Skiing

I have been watching the calendar, seeing the days tick away, knowing I should post…wanting to post…but I haven’t been able to find the passion to write. There’s still so much to tell, so many things I wanted to share.  Our successes and our challenges, both are many.   But here I sit, on the eve of the final day of April and Autism Awareness Month, trying to capture and condense all that I did not get to say, but can’t seem to stay focused because my thoughts keep drifting toward my mother.  I fear I have short-changed us both.  I’m sorry for that.  This has not been an ordinary April, and life sadly keeps moving, even amidst tragedy.  

I am hoping that this period of time is the hardest.  I hope that when I see her name on the list of contacts in my phone, the ache begins to fade.  I hope that when I drive alone in the car, I can will myself to think of someone else, something else.  I hope that I can erase the phone messages I have saved and adjust to living without hearing her voice.  I hope that when Coleman makes his giant leaps in progress, I can eventually accept that she is not here to share the news.  I hope it will all get easier. 

As it is, I am trudging along, mostly fine, occasionally sad, except for this blogging thing.  I will come back to it, I know that.  But for now, I’ll end this year’s updates with my one favorite story of this entire year.  And next April will be here before we know it and I’ll have that much more to share.  I intend on keeping a private diary of updates on Coleman this year, so sure am I that this will be a BIG year for him.  And I’ll hold onto those entries until April next year and then publish an update everyday of April next year (everyday?)  That way, it will be like you lived the whole year right here beside us.  Lucky you. 

My favorite story of success this year, as many of you already know through facebook, was skiing.  Not because of its impact on everyday functioning or core skills, but because he worked so damn hard at it.  And because I can see now that yes, he can get there.  He will get there.  And because that gives this family something we can actually all do together.  And that is awesome.

We first tried skiing the winter before last, after a friend told us about New England Disabled Sports at Loon Mountain.  We met many great families there, and all of them had children that had learned to ski through NEDS.  So we signed Coleman up, and crossed our fingers that he would do well.  In retrospect, it’s easy to see why we failed.   Coleman was completely unprepared for skiing – we hadn’t done a lot of true prepping.  Sure we had talked a lot about skiing, about how it would be fun! How he would slide down a hill, yay!   But we didn’t talk at all about how it was going to happen, exactly what he would need to do to get to this fun thing, or most importantly, what he would need to wear to do it.   Coleman had never worn a mitten a day in his life – refused, even when we went sledding .  He had never worn a pair of boots, never worn a scarf, never worn anything but tiny ankle socks, never even zipped his jacket up all the way.  All of these things were big obstacles for Coleman but necessary to enjoy skiing.  So it was not surprising, really, that back during that first winter, we only saw a bit of early success, followed by complete misery.  It was an experience laced with many, many tears and lots of aggression from Coleman.   As we began our second season at Loon this year, I tried to brainstorm about how we could help Coleman to be successful – a rather late time to brainstorm I’ll admit, seeing as we were literally in the car on our way to Loon – but brainstorming nevertheless.  I came up with a plan.  A simple, basic plan that would take some time, but one that just might work.  So on the following morning, after Billy left with the girls to head over to the mountain, Coleman and I headed to the ski shop.  We were going to start with clothes – he had to be warm, or else he would never enjoy his time on the slopes.  We bought our first pair of what we affectionately called on that first day (and what they will now and forever more be referred to as) “Super Duper Ski Socks.”  We headed back to the condo, and with the help of a timer, began to desensitize Coleman to these warm, knee-high socks.  You may as well have chopped his leg off, such was the scene trying to get them on.  But once they were on, I promised him just one minute and they could come off.  He stared intensely at the timer, and as it beeped on the one minute mark, he screamed “TAKE THEM OFF!!!”  We repeated this fun little game every half hour, working our way up to three minutes, then four and after a couple of weeks (we had Coleman’s home therapist add this into her sessions 4 days per week) the socks were no longer a problem.  He didn’t love them – but he tolerated them.  And on we moved to the snowpants.  Same process – put on the socks, put on the snowpants, and then the timer:  two minutes, three minutes, etc until he was good with them.  And then we added the scarf.  And mittens.  And helmet.  And finally, the ski boots.   All practiced inside the house at first, and then walking down the street.  At the same time, every weekend we went over to the mountain to meet Billy and the girls at the end of their ski day.  We made sure point out all the skiers with their warm mittens, warm scarves, noting their big ski boots.  (We also lightly tried to get him to indulge us in some Apres Ski time, to sit by the windows with us while we snuck in Shocktop, but he largely wanted nothing to do with this.)    In all, it took us until the second week of February, half of the ski season now behind us, before we were ready to set out to the mountain.  We talked all about it for the week leading into the big weekend, that it was Coleman’s turn to ski, that we would go over to the mountain together, we would put on the Super Duper Ski socks, our ski pants, our scarf and mittens, and our skis, and we would go up and down the hill THREE times.  Just three, we promised.  As the morning approached, I was sick to my stomach.  We had invested a lot of time – I feared it would be a fail and all the effort would have been for nothing.  With prayers said and under a clear blue sky, we headed over and walked to the lodge.  “Time to get dressed!” I cheerily said.  “NO! You don’t like to ski!” he yelled.  My heart sank.  “It will be fun! Just three times, remember?  Three times and then all done” I offered cheerfully.  And Coleman, my handsome beautiful boy, sat quietly down as I got him dressed, and pleasantly walked out the doors onto the slopes.  It was enough, really, this completely willing, unstruggled walk onto the slopes.  We could have turned around right then and it would have been a success.  But he followed through, and with Abby, Emma, Billy and I all beside him, we went up and down Sarsaparilla Hill three times as promised.    And he never complained or cried or hit.  He actually seemed to enjoy it. 

We went most weekends after that, small bursts of time – 5 times up the hill, or 7 times, one or two  hours max and then all done.  We used a harness for some runs, and others I took off my skis and ran just ahead of him and had him ski to me.  And he was great, every time.  He struggled with understanding the concept of how to control his speed – and we struggled with how to teach him.  He didn’t grasp the “Pizza” concept – to point your skis inward to make a wedge to slow yourself – and we tried a few different approaches.  The NEDS team felt for the most part that he would just have to be on the mountain a lot – and that he would naturally get the feel for slowing by turning – but that it would take time.   And we have time. Lots of it.  The time we invested this year was worth every second.

I want to end the month on this wonderful accomplishment, because it is a very clear and strong example of what great things can happen when we really put our minds to it.   It highlights how Coleman, and kids like him, operate, and what they need to succeed:  Preparation and repetition.   We understand that now better than before.  The year ahead holds so much in store for Coleman, I can hardly wait to see the changes.    Education and Medical (integrative/biomed approach to treatment) are our two primary areas of focus in the near term and we expect to see wondrous changes.  Get ready folks, this is Coleman’s year.  Expect great things. 

Thank you for reading, see you next April. J