One More Time

Ok, wait, how could I possibly write a post on activities Coleman enjoys and not include skiing???   I apologize in advance to my FB friends who are reading, as I was in serious overkill mode all winter posting about Coleman’s unbelievable turnaround.  But for the benefit of you who only come here annually to check up on my guy, you simply must know about skiing.

 

We ski with a program run at Loon Mountain under New England Disabled Sports (NEDS). Volunteers staff this program and coaches are both adults and teens (in the highly coveted ‘PACs’ roles – Pre-adaptive Coaches).  I think this marks our fourth year skiing, with colossal fails the first few years.  Then we smartened up a bit, and chose to work on desensitizing him before we even got to the mountain.  You might recall our photos of standing in the playroom with ski boots on, and Coleman with his timer.  Waiting for 2 minutes to pass.  And then the same thing with helmet, mittens, ski pants, and so on until finally, near the end of February, my guy was ready to head out.  It was an ok season – he did make it out a couple of times and while I wouldn’t say he liked it, he didn’t hate it, so that was a win in our books.

This year we were hopeful that he would get better, start to enjoy it a bit more.  He certainly started out of the gate happier, thanks to that anti-inflammatory he is on. No issues with any of the clothes at all, and the helmet and boots all went on easily.  Things went so smoothly that I even tried to get the goggles on him, but that was big No, so I kept my winnings and moved along.  Dare I say he seemed excited to be there?  And when he was all dressed and ready to go, he was pleasant to his new coach Alan and off they went without so much as a hint of rebellion. 

Weeks went by and all was still going smoothly but it seemed Coleman just could not grasp the concept of slowing himself.  The coaches held his hands, leading him, but he was heavily dependent on them.  That day, less than a month into the season, I watched him from the bottom of the hill he was on.  Billy skied over and watched too.  After a few minutes, Billy and I went up on the chairlift for a quick ski on our own.  On the chair, I said “I don’t think Coleman is ever going to get this.  He just doesn’t understand how to stop or slow down, and I don’t think he ever will.  I don’t want to keep leaving him with the coaches – the whole point was so that we could ski together.  I want to stop.  Let’s just use the harness and take him ourselves.”  I was so sad and disappointed after all the effort we and Coleman had put in, but it didn’t seem fair to keep making him try.  Billy agreed and so we decided that afternoon would be the end.  We skied down together feeling pretty disheartened, and went back over to the hill where Coleman was to take him from the coach.  Except that as I scanned the hill looking for him, I couldn’t find him.  “Do you see him?” I asked Billy, still looking.  And then I saw him.  He was a tiny black image skiing about 5 feet behind his coach.  He was following him closely, and turning when the coach turned, but he was doing it without holding hands.  I could not believe my eyes.  ‘Oh My God!!! He’s doing it!!” I screamed, undoubtedly too loud.  It was just unbelievable.  I know my mother had a part in this, hearing us talking, she was probably all  “oh you want to stop do you?  We’ll see about that” and she did her angel magic thing and BAM! Coleman was skiing. 

So we didn’t end it there obviously.  We kept Coleman in lessons all season, and he started to really love it.  He got better and better and eventually made it to the chairlift.  Note to autism moms:  make sure you prep your kiddos about what a chairlift is and how it works. We didn’t and when his coaches decided one day he was ready for it, up they went, and as luck would have it, the lift stopped for a few minutes as it sometimes does.  Only Coleman had no idea what the hell that meant, and was suddenly scared to death, and started to flip out, trying to pull the bar up, flailing about. Holy S**t, folks, I nearly died watching him from one chair behind.  Thank God for the calm, level-headed coach that held onto him for dear life.  When we finally got to the top, we the adults were all pretty shaken, but Coleman was perfectly fine.  I think he was like “Ohhhhh it takes us to the top.  I get it now.”  J   Later that night, I showed him videos of what the chairlift was, and we talked about it, and it was easy-peasy after that. 

A lot of friends ask me what I think made this year different for Coleman.  I say it was two things:

1.      The anti-inflammatory.  He is simply so much happier and more relaxed since he has been on it.

2.      The coach.  This year at NEDS, Coleman was paired a guy named Alan.  I’d tell you his last name
but then I’d have to kill you to be sure you wouldn’t go steal him away from us.  J  He was a great match for Coleman, in both his demeanor and his approach.  He was gentle and kind, and effective.  Overall, a really, really wonderful person.  Coleman loved him.   And it also helped that we had him fairly consistently.  In past years at NEDS, we would get a different coach each week which is really hard with a kid like Coleman who needs consistency in pretty much everything.  So getting Alan was a win.  Getting him every weekend was a coup. 

By the end of the season, we were starting to see that Coleman actually enjoyed skiing, that he didn’t want to leave.  When normally we would have comforted him with “One more night and then we can go home”, we were now saying “I’m sorry but we have to go home!”   On our last weekend up there, it became pretty clear that we had another true skier in the family.  It was freezing (one of the only really cold days all season), with temps in the single digits and the wind-chill below zero.  We tried to tell him it was too cold to go, but he insisted. “Just ski” he pleaded.  We finally decided we would take him for one run and he’d see how cold it was and want to leave.  So we did that, and after that ridiculously cold run, shivering, we said to him, “We can be all done now!”  Coleman just looked ahead and said “One more time.”  

Living The Dream

So I figure it’s about time to start catching you all up on where we are with Coleman’s functional healing.  As many of you know, we began our journey to address some of the underlying symptoms of Coleman’s autism about a year and a half ago under the guidance of Dr. Kenneth Bock in New York.  We learned a lot about Coleman that we didn’t know (i.e. Lyme disease, Yeast, leaky gut, allergies, C677T…) and began a full program to begin healing some of the his underlying issues.  (You can read about our initial appointment and early results under the label "Dr. Kenneth Bock" in the column to the right.)    

When we left off last April, Coleman had just gone Gluten Free, and we had gone through what seemed to be a hellish withdrawal.  It was followed by several good weeks, so we enjoyed the early spring,   Then things got ugly again and we seemed to be right back at where we started.  Two steps forward, one back.    We knew Coleman was battling a major flare up of Epstein Barr virus.  Many kids with Autism have chronic viruses that are constantly reactivated.  During flare ups, they have many of the symptoms of the virus, but for kids like Coleman who are unable to express how they feel, it leads to a rather unpleasant situation.  He was unhappy, aggressive, hard to please.  To make matters worse, Coleman had developed a verbal tic.  He would stutter the sound “TCK, TCK, TKC, TCK” NON STOP.  He would use all his breath saying it over and over, and then take in a deep, long breath and start saying it again.  He did this over and over.  It was driving us all pretty crazy.  But Coleman couldn’t help it.  I would say, completely frustrated, “COLEMAN PLEASE STOP!!!”  And he would look me and, as he exhausted his breath on the last “TCK”, he would gasp a big breath in, say “I’m sorry!” and then start over again.  It was exhausting to hear, and exhausting for him to do.  Combined with a surge in his scripting, and the talking to the wall thing that he had started a couple of months earlier, we were starting to feel like all the good gains we had made were disappearing. 

  

To combat the virus, we tried a 60 day course of Valtrex (an antiviral) without any impact whatsoever.  We started natural treatments too but they didn’t help.  Dr. Bock was dismayed.  “His immune system is so weak.”   Blood tests showed things had actually worsened.  The markers for active EBV had climbed higher.  We started talking about immune therapies.  At the same time, Dr. Bock felt that we needed to try an anti-inflammatory.  His concern was that the extent of the virus and Coleman’s inability to control it, was resulting in extensive chronic inflammation.   Chronic inflammation can be anywhere, including the brain, what is also known as autoimmune encephalitis.  He prescribed Zithromax, but told us Coleman would need to have a baseline EKG before he started, and then another after he had been on the medicine for 5 or 6 days.   Apparently a tiny percentage of people have a negative reaction to Zithromax, resulting in cardiac arrest.  I was suddenly less fond of the idea.  He assured us ‘almost never’ is that the case, but they had to check to be sure, particularly if he responded well and the course of the antibiotic ended up going on much longer than the standard 5 day course.  The EKG checks your QTc level – and remember here I am not a doctor, I just play one on this blog J so excuse the simplistic crude interpretation I’m about to give.   The QTc Interval is a representation of the time it takes your heart to recharge between beats or something significantly more complicated than that.  J  In some people, Zithromax causes a prolonged QTc interval, which can lead to cardiac arrest.  Coleman’s baseline QTc was 438, which was considered on the higher end (above 440 was considered prolonged) but still safe enough to move forward.  And since he had been on Zithro in the past, we began the trial that afternoon.  By the following day, Coleman was a different kid.  He was so much better.  It was crazy.  It was unbelievable.  This is amazing, we thought.  We were living the dream.  The short dream, apparently, since Coleman had his second EKG on day 5 and his QTc had climbed to 460.  We were told to stop the medicine.  It was like being given a golden key and then having to give it back.  For a teensy moment, I thought, well exactly how often does this cardiac arrest thing happen?  I’m joking, but seriously, that’s how easy going and happy Coleman had become on the medicine.  Alas, within a couple of days everything returned and he was miserable again.  But Bock was optimistic – he said it helped to know that the med was working.  He needs an anti-inflammatory.  We’ll try others.  Be patient.  So we did and then, finally, far too many months into this miserable phase, we found one that worked.  And within 24 hours of starting, again, things were amazingly better.  All the anger was gone.  And the aggression.  And the anxiety.  And even better, that morning, as Emma came downstairs, she looked at Coleman happily playing on his computer.  She watched him for a few minutes and tip-toed softly over to me and whispered quietly so Coleman couldn’t hear: “The TCK TCK TCK is gone!”  She was right, it was gone.  And it hasn’t come back since. 

It’s been several months now and things are still amazingly good.   And our last blood test showed that the EBV is down 200 points.  We’ve started to add back some of the natural antivirals to go with the momentum in trying to rid Coleman of this virus for good.  At the same time, we’re taking advantage of this sharp drop in anxiety to break some old habits and introduce some new good ones.  So far, so good.  At this rate, it won’t be long before we really are living the dream.  J

Changes

Changes

So nearly everything I’ve read about Biomed healing talks about how long it can take.  The common analogy is that Biomed healing is not a sprint, it’s a marathon.  As such, and to try to harness my expectations, I was very much keeping in the state of mind that we wouldn’t see any serious improvements for several months.  My plan was to re-evaluate after a year, and see where we were.  I really had no plans on abandoning anything, but figured after a year it would be a good time to figure out if we needed to rebalance priorities.  So I was very much surprised when, after only two weeks, I started noticing changes. 

The first was at the library on the morning after I had given Coleman his Methyl B12 shot.  I take Coleman to the library every Saturday morning.  He doesn’t enjoy books at all, despite various attempts at including them in one of the many nighttime rituals.  I started the library trip as a means to get him used to sitting and at least looking at a book.  On our first trip there were a lot of loud “NO THANK YOU”s and “ALL DONE”s but after a few weeks, he adjusted to calmly sitting through a short story.  Still, some days he barely looks at the book, instead looking away and scripting on about some show he had watched earlier.  I have to redirect him, closing the book and getting him to stop and look at me.  “I’m ready” he finally states and we open the book again and go on for another couple of pages, until he inevitably starts scripting again and we repeat the process. 

On this particular Saturday, Coleman seemed more ‘up’ than usual, and instead of his leisurely (super slow) saunter up the path to the library, he moved at a quick pace to the door and up the ramp to the children’s section.  Once there, he was unusually attentive to the book.  He would stop me before I could turn the page and stare up close at the words, examining them like it was the first time he could see.  He pointed to the words, looked at me to read what it said, then stared back again at the word.  He did this for several pages.  I only had to redirect him once or twice throughout the entire thing.  It was an absolutely noticeable change.  I thought about the B12 he had that morning.  Interesting, I thought.  Then we headed down to the coloring table.  We took our seats at the table and I started helping Coleman draw a stick figure.  He can almost do this on his own now, we’ve done it so many times together.  As we were working on it, a little girl came to the table and sat across from Coleman.  He stopped coloring and stared at her.

“Hi. What’s your name?” he asked.

Oh, how I pray you can understand the magnitude of this.  Thank God Abby was with us this day so I had a witness.  She looked up as soon as he said it and stared wide eyed at him and then at me.

“I’m Emily” the little girl answered.   

“Hi Emily” Coleman said back.

“What’s your name?” she asked him.

I looked at him, incredulous, staring, anxious… and my little man who has never had a back and forth conversation like this with anyone, who has never initiated such a conversation, who has never responded appropriately without prompting, simply said “I’m Coleman.”

Sound the goddamn trumpets everyone because shit just got real.  A true honest-to-God back and forth conversation that lasted a precious 10 seconds or so.  Abby and I stared speechless.  Literally.  It was all I could do to not get up and hug that little girl.  And I was praising Coleman so much for the amazing job talking that the little girl probably thought I was a little wacky anyway.  And as we got up to leave, I was so distracted that I left his paper on the table.  Emily came running over to us with it.

“You forgot your picture, Coleman” she said, handing him the sheet of paper.

“Thanks Emily” he responded as he took the picture from her.

 And that, my friends, was the moment that I knew we were on the right path.

 We saw so many things over the next few months that I could hardly believe the changes. There were many far more subtle changes than drastic, but still some were just as surprising as the library visit.  His focus on words and letters came alive, and he was suddenly stopping anytime he saw words to try to read them. In the supermarket, he tugged at my arm. “Fresh?” he asked.  I was confused and asked him to repeat it.  “Fresh…” he said again.  “Fresh what?” I asked confused.  He pointed above my head.  On the wall above the bakery it said “Fresh Bakery”.  And so began his reading of words.  Never once had he so much as noticed a giant banner hanging, and suddenly, I couldn’t go down the aisle in the supermarket without stopping every 10 seconds to read words to him.  It was that sudden of a change.  We now try to find words whenever we are out, pointing to signs and store names, asking him “What does that say, Coleman?”  He stares at the words, really trying to figure it out. And I’ll tell you it was pretty damn shocking to see how many words he could actually read

His expressive language seemed to get a kick start as well, and he would say things that encompassed multiple thoughts, something he had never been able to do in the past.  For example, on the ride back from New Hampshire one Sunday, he called from the back seat, “Bathroom?” which meant he had to go.  “Ok, bud, I’ll stop at the next exit and you can go.”  Satisfied, he returned his attention to his DVD, and a few minutes later asked “Max and Ruby?”   He was watching a different show and he wanted Max and Ruby.  “Ok, give me the DVD” I said as I reached back, intending to swap out the DVD.  He looked up and said instead, “It’s ok.  You can change it when you stop.”  Those Exact Words.  Oh, how hard it is here to express the meaningfulness of such a statement, how hard those thoughts are for him to verbalize.  How he could not only understand we would be stopping soon, and that we could change the DVD at that time, but also that he could also put those thoughts into words, and that he was ok with waiting until then.  Trust me when I say it was striking.  Abby was sitting beside me and after he said it, she said “Wow, that was impressive.”  And it was.    

He also was more engaged, more interested in what was going on around him, and that became apparent in many daily activities.  But over Christmas, it was unmistakable.  Never a fan of presents, he refused to open gifts in the past. We never knew exactly what he didn’t like about it, but at birthdays or Christmas he would run out of the room or just yell “NO THANK YOU” when you tried to get him to open presents.  So this year I only wrapped one or two of his gifts.  And on Christmas morning, I regretted it.  As we opened gifts, we asked him if he wanted to open one and he smiled.  He opened that gift and was talking about it all the while.  “What is this?” he was saying.  And when he got the wrapping paper off, he exclaimed with excitement “It’s a box!”  And when we showed him that he had to open the box, and there was gift inside, he did so and was super interested in all of it.  He didn’t care much for the actual gift itself, but for the first time ever, he actually wanted to participate in the activity.  It was the best Christmas present for all of us. 

Above all, the most drastic and noticeable change in Coleman was the overall reduction in his anxiety.  This was a game changer.  Even in school, where they track the number of aggressions and tantrums Coleman has on a daily basis, there was a noticeable difference.  He went from 10.7 aggressions per day when he started, down to 5.0 before we began the supplements.  In January –March, he averaged just 1 per day.  And zero tantrums.  ZERO.  His School/Home Journal came home every day with comments like “Great day again”, “Excellent work at the desk”, “Great mood”.  And we saw the same thing at home.  It was like someone had ratcheted down his internal meter exponentially.  Every night I found myself saying “I can’t believe how low key he is!” and saying to Billy “Isn’t this great?  He is so happy.”  I think the reduction in stress across our household declined ten-fold.  We all lived a little better during this time.  We were even able to start eliminating some of the unproductive OCD habits.  We approached this slowly but made meaningful progress.  For example, we started with one of the before-bed OCD routines of touching all the corners of Emma’s bed.  We said “Tonight you can touch them, but in 2 more days we won’t touch them anymore ok?” He paused.  “In two days I won’t touch them?” he asked.  “Right.  You can touch them tonight but in two days we’ll stop.  You don’t need to touch them anymore. You’re fine!” I said optimistically.  And the next night we repeated it, and said “One more day and then no touching” and on the next night, he looked at me as he approached Emma’s bed and asked “You don’t need to touch them?”  “Nah! You’re fine!” I exclaimed like this was some great piece of news.  And that was the end of that.  This was simply not possible before. 

We used the same approach to break out of the “Go that way” habit he was so deadlocked into.  You might recall how he would completely melt down if we drove a different way home, sending Coleman into hours of unstoppable hysteria.  With this new Coleman, though, I thought we had an opening. “Today we’ll go that way, but tomorrow, when we go to gymnastics, we are going to go this way, ok?” and I pointed the opposite direction than we normally took.  I reminded him of that plan as we drove to gymnastics the next day too and after gymnastics, as we approached the dreaded intersection, I reminded him again.  “Remember, today we are going to go this way.  It’s really fast!  Later we can go that way again.”  And I held my breath as I turned right onto Main Street.  But my amazing, calm little man just repeated me.  “We can go that way later.”  And again, that was the end of that.  Now I drive down Main Street at least once every week to keep it alive for us.  Two OCD habits down, about one hundred more to go.  J

So the changes are absolutely real.  Perhaps they sound small to you – I don’t really know – but to us, well, these are mountain-moving kinds of changes.  So we are keeping on this path, cautiously but resolutely moving forward.  We have a long way to go, but we can do this.  We will do this.