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.”  

Track

Yikes how is it already April 24?  I’ve been slacking, enjoying this once per week post pace, realizing suddenly the end is near!  Lucky for me I only have a couple of more updates and then we’ll be done until next year. Continuing with the prior topic of play, I wanted to talk a little bit about some great programming that we are enjoying – and maybe you can spread the word to others that might have kids like Coleman and are looking for some fun things to do.   

  

There is a great gymnastics program offered at Head Over Heels for special needs kids.  The sessions are only a half hour, and are one-on-one.   Joanie is one of the instructors and she used to be a special ed para in Hingham schools.  She is awesome. It’s really a strength building class, which my rubber-band boy really needs, but she makes it fun.  Even hanging from the rings is a chore, but he gets stronger and better at it every week.  Coleman adores it. 

https://youtu.be/9owc226Z0LM

Outside of gymnastics, almost every social activity we do is run by SNAP.  In 2014, two Hingham groups – the Hingham Sports Partnership and the Hingham SEPAC – teamed up to offer athletic and recreational activities for special needs kids in Hingham and the South Shore.  Programs are offered across a broad array of activities, including crew, dance, soccer, basketball, tennis, painting, skating, and so many more.  Activities are staffed by a slew of volunteers, both adults and young teens, in a model that seems to work for all parties involved.  It’s obviously a wonderful option for kids like Coleman who are not able to participate in traditional sports, but it’s also equally beneficial to the volunteers who learn to appreciate the limitations and struggles of kids with all sorts of disabilities, while also seeing firsthand the love they bring.

To be honest, I really don’t know where we would be today without these programs.  Before SNAP, the only activity we tried was T-ball.  Coleman had just spent two seasons watching the girls play softball, waiting patiently at the end of each game for the final out.  He would look at me with excitement:  “All done?!” he would ask as soon as we arrived, and continue to ask every five minutes until the end.  Which is why, after the second game, I opted to end that misery for both of us by arriving at all future games much closer to the end.   When the final out was made, I would exclaim “ALL DONE!” and he would bolt around the fence and start to run the bases.  Some of the girls ran too, and he loved that even more.  So we thought yes, it’s time for T-ball.  He will love it.  Except I forgot there is more to baseball than just running around the diamond.  Like seriously forgot.    After his first ‘at bat’, when he barely moved the ball off the Tee, and ran excitedly around the bases, we all cheered and were like “YAY you did it!!” and, lost in our excitement, we didn’t realize teams were switching up and it was ‘our’ turn  to be outfield.  Outfield?  Like to catch stuff??  Egads it was a complete fail.  Coleman kept walking away, leaving the outfield, and I would turn him back, remind him we had to watch for incoming balls (which at this age of course never made it much past the T.)  Walk away, turn him back.  Walk away, turn him back.   That little dance continued pretty much the whole time, making both of us realize baseball was really not going to be Coleman’s game. 

So for a while, we didn’t do any other after-school activities.  We tried to sign up for some things at the Y, but I was met with lots of resistance.  I understand things there have changed for the better now, as they hired a coordinator for inclusion programming, but Lordy, when I tried to get Coleman involved, it was a lot of “I’m sorry, we just can’t do that.”   I may or may not have dropped an F-bomb in a fit of frustration.  I may or may not have kicked something.  It may or may not have been a person.  Anyhoo, lucky for me, along came SNAP.

We started with Soccer – and have done that several years now.  As I said before, it’s more like a drill session - they certainly don’t run a game, or really ‘play soccer’ but instead they kick the ball around, passing it among each other, trying to help the kids get it into the net, etc.   This works best for Coleman and many of the other kids who struggle with team concepts and staying focused on what exactly they should be doing.  To be honest, Coleman doesn’t even really care for soccer – but God who he loves being around the other kids.  He has the energy of a small garden snail so high action isn’t his thing, but he sure did love to go to soccer.   

What he loved even more, however, was Track.  SNAP teamed up with the South Shore Fireboltz Track Club to offer a truly integrated program where special needs kids, along with mentors from SNAP, participated in the regular Fireboltz track practices alongside typical kids.   We had pretty low expectations here given Coleman’s energy levels and the fact that he almost never runs anywhere, but the amazing Alyce Jordan changed all that.  Alyce was Coleman’s old teacher – he had been with her for three or four years before he left Hingham - and she was volunteering for Track.  We prepped Coleman for what was to come, and took him to the high school track a few times in the weeks leading up to the start explaining, “This is the track.  This is where you will run.”  We also told him a social story each night, saying “We’ll go to the track.  We’ll see Miss J, run around the track, do some jumping games, and come home.  It will be fun!”    We repeated this every night, and each night, his only comment was “See Miss J?” I underestimated how much he missed her.  

The day track was to start, Coleman was a bundle of excitement.  He asked constantly throughout the day about when we would go, confirming with me, “See Miss J?”  And when we arrived at the field, his eyes darted back and forth searching for her.  I found her first, and then I looked to see if Coleman had found her.  Oh God, my heart.   It was clear he had.  His hands clasped together, he was smiling wide but stared down at his feet.  I bent down close to him.  “There she is” he said, barely able to get the words out. “Yeah!  Go get her!” I exclaimed and off he went towards her, slowly at first and then faster, running, with his huge beautiful smile beaming across his face, and hugged her in a way that was obvious to anyone looking how much he loved and missed her.  It was as glorious a reunion as could be.  And after the hug, well, I don’t know what exactly happened, but my guy, the snail, was so excited that he actually started running.  A lot.   He participated in this SNAP activity better than any other activity we have ever done.  He loved it.  He laughed the whole time, skipped around, and each week, asked with anticipation, “5 more days to Track?!”  I know our success was due to Alyce.   And we can’t thank her enough. 

Coleman also participated in ice skating, happily inching along the ice, enjoying the buzz of people around him, even though he hates skates and is not a big fan of helmets.  We also attended a super fun play group at the Rec Center where Coleman jumped in a bouncy house and went down inflatable slides with so many other kids, both special needs and typical (siblings).  He loved every minute. Both of those programs were run by SNAP.   There are more and more programs offered each year, enabling Coleman and so many others like him, the chance to participate in activities within our own community that would otherwise be unavailable to him.  We couldn’t be more grateful to everyone involved. 

Ring Around The Rosie

After my last post, I received a tremendous, warm outpouring of love from friends and strangers alike.  So many offered to be part of Coleman’s posse – he and I are both so touched.  Thank you for the love.  I took up a couple of the offers for playdates for Coleman – a little at a time – and we so look forward to adding even more in the weeks ahead. 

This morning, we met with a family who overlapped with us at Children’s Hospital 10 years ago, both our boys in the fight for their lives.  Her son is about the same age as Coleman and he’s a survivor too.  Tall and handsome, he was gentle and kind with Coleman.  Although our visit was brief, it was good for both of us and a nice start to pushing Coleman a little out of his comfort zone.  Thank you Kerry and Patrick.

We came back home, had lunch and we were talking about what to do next when there was a knock at the front door.  There stood three kids – one of whom I knew.   I opened the screen door.  “Does Coleman want to play tag or hide-n-seek with us?”  Coleman, standing behind me, repeats “Does Coleman want to play tag or hide-n-seek with us? “  I turn to him and say “Coleman!  I think these kids are here for you!  What do you think?  Do you want to play?”  “Do you want to play?” he repeats again, still behind me, and in the same breath he finishes with a soft but firm “YES!”  He twists his fingers in front of his face in excitement.  “You have to listen to Bella, OK?  Bella will help you” I try to explain to him.  The concept of going outside without me or Billy or Abby or Emma is something he hasn’t done so he’s confused and says “Come with me!” as I lead him outside.  But the girls and Billy aren’t home and I really want to give him a chance to be with these kids without me.  “You go play and I’ll wait right here” I tell him.  “C’mon Coleman!” Bella says, holding out her hand.  And within seconds, he’s off running with them.  Down the side yard, through the back, and around the house, laughing and repeating them the whole time.  I listen through the patio doors and relish the sounds of laughter and voices.  Three more kids have arrived and there are seven of them in total now.  They are alternating between Tag, Hide n’ Seek, Duck Duck Goose, and jumping on the trampoline.  They hold his hand as they run, and this makes me smile.  I want to push a button and pause this moment – I am so happy for Coleman, so overwhelmed by this.  I’m watching the clock, praying Billy comes in the door so he can see it too.  But he has taken Abby on a college tour – gulp – and he returns just as the kids are leaving.

Now I know of course that these kids were put up to this by a parent who reads this blog.  And I am really grateful to that parent.  Really, really grateful.  But I will also bet that it only had to be suggested to these kids.  They were not forced into this.  It was obvious from their kindness, the way they took his hand, the way they helped him off the trampoline, the way they pretended they couldn’t see him during hide n’ seek.   They cared.  For a solid hour and a half they stayed and played.  It was one of the kindest gestures I have ever witnessed.  It meant the world to me and to Coleman.   Thank you Bella, Sara, Will, Cee Cee, Sam, and Bobby. 

While it’s obvious that this was a first impromptu playtime for Coleman, and although I sure hope it won’t be the last, I am also realistic about the busy schedules of kids these days, as well as Coleman’s own limitations.  And although my prior post highlighted the painful lack of friendships in Coleman's life, I need you to know it is also filled with so, so much love.  He is blessed with two amazing sisters and two parents who adore him.  And countless aunts and uncles and cousins that feel the same.  He could not possibly be loved more.     But as much as we would love it, not even our extended family can be at our beck and call and just drop what they are doing to play with Coleman. 

So we move forward, and we pray that each day he grows and learns more, that his abilities and mind allow him to step deeper into, and become a more active participant in, this beautiful thing we call life.  Until that happens, we are quite happy to meet him where he is right now.  We love him and play with him in ways that he understands.  We work toward growth, but we enjoy the ride along the way. 

I know that we, and all who touch Coleman’s life, are better people because of the experiences we all share with Coleman.  Even those kids that came here today.   They are young, but I think they felt pretty good inside after what they did for Coleman.  It was a win/win.  And I am reminded of a simple but powerful quote by Robert Ingersoll.  “We rise by lifting others.”   In the spirit of Easter, may we all find opportunities to lift others.  

A Posse Of His Own

It’s a gorgeous Saturday afternoon and we just spent almost two hours at the park. With the sudden arrival of warm weather, the park is bustling with kids.  Normally, Coleman sticks to a solid routine at the park:  first the red swing, then the tunnel, etc.  But today with all the kids running around, Coleman just wants to watch.  He loves watching kids run and play.  He moves his fingers in front of his face in excitement like a mad scientist, and laughs out loud as they run past him.  “I got you Grace!” one boy yells as he hurls past Coleman and tags the young girl.  “I GOT YOU GRACE!” Coleman echoes, and the boy glances back at him confused, but then runs off again.  Grace then speeds past Coleman in pursuit of the others.  Coleman squeals in delight as she passes.  “Go! Go! ” he yells to her.   I’m standing a few feet behind him just watching it all.  A dad is standing next to me, and he watches Coleman with a smile which makes me happy.  I often feel compelled to tell strangers that Coleman has autism as a means of explaining his peculiar behaviors.  But this dad's smile tells me I don’t have to.  “Ten more minutes guys!” he calls to his kids.  Coleman yells out beside him “Ten more minutes guys!” 

Most days at the park I don’t let Coleman stand around and watch the kids.  “Let’s go on the slide” I say, coaxing him away from his spot toward the slide.  He agrees but as soon as we go down the slide, he runs back to the same spot to watch the kids run by.  But today is the first weekend since late fall that there are a lot of kids at the park.  Over the winter it was pretty much just Coleman and I.  So I let him watch.  Almost the entire time we are there, he watches and laughs.  When we finally walk to the car to head home, Coleman turns to me and says happily, “That was fun!”  I hug and him say “That WAS fun!”

We drive across town and then into our neighborhood where people are out and about on every street.  I wave from my open window, and continue to drive.  As I approach the block before ours, I see a group of kids approaching.  I know immediately who they are:  they are a posse of boys all Coleman’s age.  A few of them I know well.  I stop at the intersection and watch them.  There are seven of them, three on bikes, one on roller blades, and three walking.  One of them has a lacrosse stick and he’s catching a ball from one of the other boys as they saunter along.  They are moving slowly, stopping every few feet, and bantering among themselves.  The one with the lacrosse stick trips off the sidewalk but doesn’t fall and they all laugh.  I can’t hear what is said but whatever it was, they all laugh again in response.  

I stare at them – I can’t help myself.  I’m looking at their clothes, their hair, the way they walk, the way they casually laugh with each other.  Before I know it, all of the happy feelings from our time at the park have silently disappeared and I am left instead with a familiar lump that makes its way up my throat.  I don’t want to but I can’t stop imagining Coleman walking along with them too.  I try not to think about this, but it’s like a flood in my brain that I can’t stop.  I wonder which one of the boys would be Coleman’s bestie. I wonder how he would look in those calf high sports socks that they are all wearing.   I wonder if they are talking about girls yet.  I glance in the rear-view mirror at Coleman.  He is looking out the window at the boys too.  I realize we are not moving and so I start to proceed through the intersection.  As we pass, a few of the boys recognize us and yell “Hi Coleman!!”  I wave and we keep going. 

This is a recurring agony:  seeing typical kids that Coleman would have been friends with, chumming around, doing stuff typical boys his age are doing.  Coleman will never be chumming around in a small posse of his own, laughing with his pals as they walk up the street playing lacrosse.  And not only because he can’t play lacrosse:  because he doesn’t have any friends.   The loneliness of having autism is heartbreaking. 

When we get back to the house, Coleman stands at the front door, looking out.  “Where did the kids go?” he asks.  I think about the boys.  I say “I’m not sure buddy.”  “Do you want to see them?” he asks, meaning he wants to go see them.  I contemplate for a second taking him out for a walk to find them – maybe I can find them and convince them to come back to our house to play tag.  But I know Coleman really just wants to run, not play tag. And he wants you to hold his hand while you run.  I think how that will go over with the boys.  “OK, boys, thanks for coming.  Now everyone just starting running around, chasing each other , OK?   And you, Tommy, take Coleman’s hand OK?”  I wonder if there is something else I could convince them to play.  But Coleman’s game repertoire consists largely of pre-school games like hide n seek, tag, and duck, duck, goose and these boys are all 12 and 13 years old.  Coleman is still looking outside.  “Do you want to see them?” he asks again.  “I think they had to go to school” I tell him, because I can’t bring myself to say that they can’t play with him.     

When the girls were young, it seemed like there were always kids around.  On lazy Saturdays we would round up the kids in the neighborhood and play dodge ball.  Chalk covered the street in pastel patterns of names and hopscotch boxes.  Scooters and bikes littered the driveway.   But for Coleman, there is none of this.  There are no friends.   And while he doesn’t understand ‘play’ in the traditional sense, nor does he understand the term ‘friend’, he does desire the joy and fun that ‘friends’ bring.  He craves social interaction.  Every weekend he asks “How about we go…” and he waits.  He waits for me to fill in the blank with something fun to do.  He’ll accept almost anything really – a trip to the supermarket, Target, the library, a bike ride, even a walk down the street.  But most of our outings are just he and I, and even though I try to stay engaged with him at these times, constantly talking to him and asking questions, he quietly slides back into his own world of scripting and tv shows. 

The absence of friends and social opportunities is one of the toughest parts of having a child who is different.    Coleman knows enough to want to play, but not enough yet about how to play.  He yearns for social interaction, yet is unable to converse back and forth and engage appropriately.  It’s as sad a catch 22 as it gets.  So we try find opportunities for him to be with other kids.  There are some great programs run by SNAP (Special Needs Athletic Partnership) that we absolutely love and that Coleman thoroughly enjoys. But there is no unscheduled, unprogrammed social time.  There is no calling his friends to play catch out front.  No impromptu games of hide n' seek. No knock on the door asking if Coleman can come out and play. I've been thinking about this a lot lately.  I wish for Coleman a time and place where he can be with other kids, kids that will see him arrive and run up to him and happily exclaim “Hi Coleman!  Want to play tag?!”  So I'm working on that.  It's a bigger project than you might think.  In the meantime, I figured out what Coleman needs in the near term.  He needs his own Posse.  I’m recruiting members if you are interested.  :)

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

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.  

Welcome Back, Year Four!!

Well Hello there and Welcome Back!!  We are starting our fourth year together – thank you for coming back!  We had a little face-lift over here in honor of our fourth year.  We were a little overdue.  We’ve had a busy, wonderful year, and with our fingers firmly crossed, we are looking forward to another year of good gains.  I have only a few updates this year, but I’m excited to share them with you.

As for today, it’s officially Autism Awareness Day and as I consider this annual blog, I struggle with perceptions and opinions about what this day means, and what it does for those challenged with Autism.  Several articles recently published by parents of kids living with autism report that they cringe as Autism Awareness day arrives each year.  I am not one of those parents.  Still I find their articles compelling and support their intention, if not their message.  To that end, I would like to highlight what I think Autism Awareness Day is and is not. 

It is not a time to ‘celebrate’.  I do not feel that turning on a blue light or wearing a blue shirt or writing this blog in any way celebrates autism.  Do I celebrate my son?  Hell yes.  Do I celebrate his achievements and his tremendous effort?  All day, yes.  But the autism part?  No, I do not celebrate that.  I hate that.  I detest every tiny thing about autism.  I resent that it makes even the simplest of tasks monumentally difficult for Coleman.  I cry over what this awful condition has robbed him of.  I do not celebrate autism.  Not this day, not this month, not ever. 

It is not a time to share only feel good stories.    The senior with autism getting asked to the prom;  the high functioning Aspie who overcame his challenges and is graduating at the top of his class, the autistic middle schooler who started a social group for other special needs tweens.  These are all wonderful, important stories that we need to hear.  But it’s not only what we need to hear.   Autism is complicated and encompasses much more than these stories.  And it’s important that the wider population understand the less pretty side of autism. 

“At the opposite end of the autism spectrum, parents are diapering their teenagers. Distressed children are literally banging their heads against walls. Parents are cleaning feces from furniture, carpet, and fingernails daily. Families are trying to function despite extreme sleep deprivation. Hyper-vigilant parents are turning their backs for a second and losing their beloved children to drowning.”¹

It is not a time to push the dogma of acceptance so hard that we quietly shame families into silence.  Calling autism neuro diversity is like calling cancer immune diversity.  I will not accept Coleman’s autism as personality trait.  Acceptance in terms of understanding both the strengths and weakness of this population, and finding creative ways to make them active members of their communities is, I think, what is hoped for with Autism Awareness and Acceptance.    But to stall the conversation of cause, hope and cure, to silence the discussion on successful recoveries from autism, depicting them as untrue and unfounded, to ask parents to acknowledge defeat quietly and gracefully accept autism for what it is?  No, this is not the acceptance we are talking about.  

“For seven years, we’ve dealt with days consumed with endless crying, for months at a time. With intense emotional and psychological pain that no human could fix because this was “just autism.” With intrusive repetitive thoughts that controlled every waking moment, making us prisoners in our own home and my son a prisoner in his own brain. With crushing anxiety that prevented anyone from coming to our house, and anyone from leaving. With diarrhea. Followed by constipation. With food allergies. With insomnia. With refusal to eat. With an immunodeficiency. With month after month of traumatizing IVs to treat it. With five straight years where nobody slept through the night. With rages. With holes in the drywall and rooms torn apart over transgressions as small as grandma purchasing a blue pool noodle instead of green.  With tears. With so many tears.  For seven years, we’ve been drowning. And since autism is synonymous with all things good, acceptable, and neurodiverse in this world, and since all kids with autism are simply wired differently, and since doctors who say otherwise are quacks, and since parents who think otherwise are in denial or worse, we’ve been forced to remain silent about our pain and our reality.” ² 

So as I write this blog and as I share stories of our own trials and tribulations, please know that I don’t accept or celebrate Coleman’s autism.  I celebrate my son.  Not the autism.  And when we Light It Up Blue this month, know we don’t do it as a nod to ‘acceptance’ - quite the opposite in fact.  We Light It Up Blue to remind the world that we are fighting autism every hour of every single day and that we will not give up and accept it.  Not today. Not tomorrow. Not ever. 

1   “Let’s Start Honoring People with Autism by Stopping the Celebration of Autism”, by Ashlyn Washington, The Huffington Post, 3/29/2017

 2. “My Son’s Autism was caused by Autoimmune Encephalitis and no, I wont accept it”, Walking in Quicksand.com, Sept 2016