Laughing Coleman

Coleman has recently become hyper fixated on old videos of himself.  Billy and I both have a bunch of videos of Coleman on our phones, and one day while we were scrolling through them, Coleman overheard the sounds and came right over.  He pushed his way between us and watched the screen closely.  I watched his face and a huge smile emerged as he watched himself.  Since then, he asks every night for one of our phones. 

I sit with him tonight after he asks for my phone and watch along with him.  He chooses the same video every time.  In it, his face is full and he looks so young.  The video shows him watching a DVD and laughing with such a big belly laugh that it makes him smile now as he watches himself.  He looks up at me.  “That’s you!” I say, wondering if he understands or remembers.  He slides the play bar on the phone and replays the video again.   I wonder what he thinks watching the video.  Does he wish he could be that happy again?  Because when I watch those video, I wish he could be that happy again.  I look at the date on the top of the phone – it was four years ago.  How can so much have changed?  Autism and PANS have stolen that laughing, silly little boy from us. 

Relatively speaking we are in a ‘really good’ spot at the moment, and Coleman is happy.  But it pales in comparison to the happy child he used to be.  He laughed so often and so freely, and found so much joy in in simple things.  He was happy.  But somewhere between then and now, that child has slipped away and the child that remains is changed.     

Even in these ‘good times’, he is relatively un-engaged.  It seems like he wants to be happy, but he just can’t seem to get there.  He asks every night to play a game.  And of course we comply, excited maybe that he will hear that belly laughter again.  But instead, he is barely present as we play.  No matter the game, his participation is emotionless.  Even the falling on the floor thing that he used to love has become meaningless for him.  He used to beg Billy to fall down and when he did, Coleman would laugh out loud like it was the most hilarious thing he had ever seen.  We all pretended to fall from time to time to get a good laugh out of him and it always worked.  But that’s gone too.  A couple of weeks ago, in a great display of showmanship, Billy walked through the kitchen, pretended to trip and with loud “oohh noooo” and “ahhhh”, fell to the floor in a great heap.  Coleman glanced up at him, completely unfazed, as if nothing had happened at all, and looked away without so much as a grin.  There was a time that Billy and I would have laughed over that, Billy practically breaking his back to get a laugh and getting nothing from the kid.  But this time the moment seemed so much more sad than funny and Billy and I just stared at each other, aching.  Missing someone who is gone is hard, especially when they are physically still here. 

  

It’s hard to tease out how much of the change in Coleman is puberty and how much is the PANS.  At the recent MGH PANS appointment, the Doctor reviewed some of the lab work we had done with Dr. Bock.  He stared at it for a long time before looking up at me.  “I have never seen results like this.  They are all high, and not just a little high.  They are 3x and 4x normal.” 

I thought about that a lot over the last few weeks.  I wonder if he is in pain, a pain he cannot verbalize but has learned to live with.  What would Coleman be like without that inflammation?  Would he be back to his old happy self?  We have tried several anti-inflammatory meds which are the simplest, least invasive treatment option. We’ve had mixed success.  We’ve been lucky to see many good months.  But the reality is the pattern repeats, and a flare will send us toppling down again.  And each time he goes down, it seems to take a little bit more out of him.  And when he rebounds, that little bit doesn’t come back at all.  I fear that there will come a day that he won’t come back at all and only a sad, confused child will remain.  And that is terrifying.  

   

For now, things are good.  We are in the upswing.  Coleman is actually smiling and laughing again, even though it is only a glimmer of the happiness he once had.  Still, we enjoy these good days, going places and doing things to try to spark some joy in him.  We are constantly joking with him.  All of us.  And being who we are, it’s become a bit of a competition among us, who can get him to belly laugh.  I’ll say so far, none us of are succeeding.  We are making complete fools of ourselves trying.  But we do have the old videos, and if all else fails, we pull those out and his face lights up with a big smile as he watches, and we hear that belly laugh again. 

Happy Easter!

Abby was away in Canada skiing with a friend, and Emma was with Billy on upstate NY College tours.   When I came home from work on Thursday Coley kept asking “What do you want to do?” and I kept saying “I don’t know buddy, what do you want to do?” back and forth, until finally he said “We should go get an ice cream.”  So I paid like $85 for a Cold Stone Like It Size Strawberry Ice cream in a waffle cup and ate the entire thing myself because, in case you forgot, Coleman doesn’t eat ice cream. 

I just thought you should know the sacrifices I make for this kid are legit. 

Happy Easter everyone!

EEGs and MRIs

So I guess I should spend a short time here talking about how Coleman is actually doing.  After last year’s update, things continued to improve, albeit slowly.  Coleman had perked up again, and although it was inconsistent, he seemed to be back on the happy track.  We had a decent summer, and at least one day on the cape, he was back to his old happy self, standing neck deep in the water and laughing, thrilled as the waves washed over him.  But like what seems to be a now-consistent pattern, the recovery seemed short-lived and before we knew it, Coleman seemed to be sliding back again.  This time, though, there was something new. 

In addition to the mood change, heightened OCD, and general joyless persona, he was showing signs of what looked like seizures.  He would lift his gaze suddenly and stare into space.  Or quickly look up, then down, then around, as if his eyes were following a moving light beam.  Except there was no light beam.  “What are you looking at Coley?” I asked him.  “Do you see something?”  He didn’t answer, just continued to stare at the same spot.  The episodes increased in frequency and we caught them easily on video.  I studied the videos over and over.  I knew I had to call Dana Farber.  But I had an already scheduled appointment a month out with a new PANS doctor at Mass General and I wanted to get his opinion of the videos before anything else. 

We already knew Coleman had PANS from our appointments with Dr. Bock in New York.  But my pediatrician had been on me to get another opinion, and she was able to fast-track an appointment with a renowned specialist at Mass General so I took it.  I knew that motor and vocal tics were hallmark signs of PANS flares, and in addition to the seizure-like activity, Coleman had suddenly started this vocal thing that I can only explain as a sort of a long, steady murmur or gurgle.  So I was thinking that this all went together and the seizure looking things were really only a PANS flare and nothing to get worked up about.  The appointment was interesting and in the end, the doctor agreed with Bock about Coleman’s PANS and felt he was certainly in a flare.  And while he prescribed a new anti-inflammatory medication to try to help, he agreed that due to Coleman’s complicated medical history, a consult with Dana Farber would be wise. 

We go annually to visit Dana Faber for follow-up for Coleman’s Leukemia.  The appointments up to now have been wonderfully uneventful.  “How’s Coleman doing?” and “Do you notice anything unusual with him?”  I notice a boatload of things unusual with him but I know that’s not what she means J  “Nope, he’s great” I say.    When I called in December after the MGH appointment, I simply said   “I’ve noticed something unusual.”   They took us in immediately. 

I knew before I even showed up that they would want to do an MRI.  Which was why I saw the PANS doctor first, hoping for a pass on that recommendation.  I knew that for kids that have had the amount and type of radiation that Coleman has had, the risk of developing a secondary cancer, a brain tumor, begins at ten years post-treatment.  And increases each year thereafter.  Coleman was eleven years post-treatment.  Dana Farber ran labs first, and for the first time in many years, I was truly nervous as I waited for the results.  But they came back normal which, to me, was everything.  Still, given the timing was so closely aligned to time they would expect secondary issues to arise, they wanted to do an MRI to rule out any growth.  They agreed, however, to a consult first with Neurology. 

We had to wait several weeks for the neurologist, during which time it seemed the new medicine the PANS doctor had prescribed had begun to work.  Some of the other PANS signs seemed to subside or at least lessen and Coleman seemed to be getting happy again.  Yes, he still was having the seizure looking things, but they were less frequent and certainly less intense.   And the vocal tic thing had also lessened, reserved largely for bedtime only, which affirmed for me this was a tic of some sort. Unfortunately, when we did get in to see the neurologist, she agreed that the videos were concerning and given the proximity to the ten year mark, confirmed the need for the MRI.  She also recommended a 24 hour EEG.   

 A couple of weeks later, Coleman became quite sick with a virus.  He was vomiting and completely down and out for about six or seven days, narrowly avoiding the ER for dehydration.  But do you know what?  During that time, all of the tics stopped.  No vocal tics and no head tic/seizure things.  Zero.  And although they eventually returned when he recovered, they came back again with less frequency and intensity than before.  So you can see why I can’t help but feel that this is all PANS related and not a bigger, Dana Farber issue, right?  I’m feeling mighty optimistic that this is absolutely nothing to get worked up over, and you should too.

The EEG appointment is first – it’s not until May so I’ll have to fill you all in next year on how it goes.  But I can tell you that Coleman will need to let a technician put wire leads all over his head and he’ll need to keep them on for 24 hours.  You read that right.  I’ll bet you’re laughing as hard as we were at our house when we heard that.  I think I can safely recap now how that appointment will go:  Not well.  J

Playing My Part

Coleman has about 15 children’s series shows that he loves, maybe more.  Backyardigans, Blues Clues, Ni Hao Kai Lan, Jack’s Big Music Show and so many more.  We phase through shows, watching one series over and over for weeks and then, finally moving onto another.  He knows every single word of every show, including expressions, sighs, and of course, the music.  He loves the music most.  “Sing!” he demands when I am watching with him, so of course I know every word too. 

The past several weeks we’ve been watching Jack’s Big Music Show.  As you saw in my previous post, Coleman likes to repeat things.  Shows are no different.  He stands in front of the T.V. bouncing up and down, repeating every word.  Often, he wants me to repeat the sentence that was just said, which means honestly, that I have to pay attention to what Jack and Mary are saying on the Big Music Show.  For example, when Jack turns to Mary and Mel and exclaims, “Hey Mary! Are you ready for Mel’s Super Swell dance party?!”  Coleman whips around to me and says “Hey…” and pauses.  That’s my cue.  I jump right in “Hey Mary! Are you ready for Mel’s Super Swell dance party?!” I say this as if I am truly excited for the Super Swell Dance Party.  Which I am not, because it means I also have to get up and dance, but that’s another story.  And so the repeating continues.  We take turns throughout the show, Coleman saying most of the lines and me chiming in when he whips around and gives me my cue.   We have this little game down to an art. 

He must be bored with it all, though, because recently he started to change things up.  And by that I mean he decided to rename all of the characters.  With not just random names.  Instead, he uses names from other shows.  Which, as a person required to participate, I can tell you is incredibly confusing. 

For example, in our recent episodes of Jack’s Big Music Show, Coleman has changed the names of the main characters of Jack, Mary and Mel to Dora, Uniqua, and Pablo respectively. Dora is from Dora the Explorer, and Uniqua and Pablo are from the Backyardigans.  This is a lot to follow here, right?  Do you see why I’m struggling?  Are you with me?   Coleman sings along with the words but perfectly changes the names within the narrative and songs to the new names he has chosen.  PERFECTLY.  He never screws it up.  I’m struggling just listening and then he whips around and with a big grin gives me my cue, and using the same example above, instead of saying “Hey Mary! Are you ready for Mel’s Super Swell dance party” I have to remember the new names and say instead “Hey Uniqua! Are you ready for Pablo’s Super Swell dance party?!”   Seriously, this is not just repeating anymore.  I have to really keep my shit together.  The struggle is real, folks.  And I fail often.  I stammer, “Hey..um..shoot, sorry, Coleman who is Mary again?”  He pauses the show and looks at me like I am a complete moron. He might actually shake his head in disbelief.  And he gives me the tip:  her name is Uniqua.  He rewinds to my part and we try it again and I get it right.  On and on. 

Last night before the show, I really studied the part.  Mary is Uniqua.  Jack is Dora and Mel is Pablo.  I went over and over it in my head so I was ready.  And when the show came on and Coleman turned to me for my line, without missing a beat I exclaimed “Hey Uniqua! Are you ready for Pablo’s Super Swell dance party?!”   First time, nailed it.  And the look he gave me?  He was gleeful, smiling wide and staring at me in near disbelief.  It was pride, I tell you.  The child was so flipping proud that I had gotten it right.  And this, my friends, is winning with autism.  J

The Aquarium

We went to the Aquarium today.  Coleman talked a lot.

We parked in the garage and made our way to the elevator. 

Woman in elevator, joking with her little boy:  “Wow there are a lot people in this elevator!  Good thing you took a shower today Josh!”

Coleman stares at him:  “WOW THERE ARE A LOT OF PEOPLE IN THIS ELEVATOR!  GOOD THING YOU TOOK A SHOWER TODAY JOSH!”

We head over to buy tickets, and get in line behind an older couple. 

The woman standing in line in front of us, irritated, to her husband: “I can’t believe you didn’t buy the tickets online.”

Coleman stares at him: “I CAN’T BELIEVE YOU DIDN’T BUY THE TICKETS ONLINE!”

We make our way through the doors inside.

Little girl, turning defiantly towards her Mom as we enter the aquarium:  “I think it smells funny in here.”

Coleman, stepping closer to her:  “I THINK IT SMELLS FUNNY IN HERE!”

The first exhibit we come upon are the penguins.

A young boy, standing beside us, pouts to his Dad:  “This is boring. Why don’t they do something?”

Coleman, leaning over to see the penguins more closely:  “THIS IS BORING. WHY DON’T THEY DO SOMETHING?”

Up the ramp, we come to the tanks where you can touch Starfish and Horseshoe crabs.

A little girl, pulling her hand back from the tank, “Ewww that’s disgusting! I don’t want to touch it!”

Coleman, directly behind her:  “EWWW THAT’S DISGUSTING! I DON’T WANT TO TOUCH IT!”

In front of the Octopus exhibit, I stop to tie Coleman’s shoe.

A mother leans down, angrily to her misbehaving boy:  “You better knock it off, Mister, or there will be no ice cream for you outside.”

Coleman stares at him, apparently also angry:  “YOU BETTER KNOCK IT OFF MISTER OR THERE WILL BE NO ICE CREAM FOR YOU OUTSIDE!”

We finally make it to the top of the giant tank and see the shark.

Boy about Coleman’s age, bragging to his buddy:  “Well I saw a real shark before on my Dad’s boat!”

Coleman, bragging to both of them:  “WELL I SAW A REAL SHARK BEFORE ON MY DAD’S BOAT!”

We turn the corner to get a glimpse at the elusive giant turtle.

A small toddler girl who clearly missed her nap, stands stomping her feet and sobbing loudly. 

Coleman steps directly beside her, stomps his feet and mimics the same sobs even louder.  And laughs while doing it. 

We make our way back down the ramp toward the exit.

Me, to the New England Aquarium employee standing at the exit:  “Thank you, we had a nice time.”

Coleman, to the dad in front of us who is kindly holding the door open:  “THANK YOU WE HAD A NICE TIME.”

That pretty much sums up our trip to the aquarium.  I hope you all had a wonderful day too. 

The Impossible Dream

I know the post I want to write.  I’ve mentally written it a hundred times over.  I start by calling out all of our original challenges, reminding you and me of all the pain and all the suffering that Coleman has endured.  And then I highlight how hard Coleman has worked, how hard we all have worked, never giving up on a recovery.  And finally, spectacularly, I exclaim our joyous triumph, our victory over the beast known as autism!  “Coleman is recovered!” I would pull together an impressive list of achievements, a dazzling record of how we tried and tried and finally succeeded.  You’d be all “OMG” and “That’s amazing” and I’d be all “I Know! I just knew it would happen.”  It would be an outstanding post, and the news so miraculous it would be shared over and over.  And I’d probably end up on The Ellen Show, which would be the second best part of Coleman recovering. 

But much to my great dismay, I’ll never go on Ellen and Coleman is never going to recover. 

I hurts to write that out.  The reality of the words is like a punch in the stomach.

“I just really want any improvement” is what I’ve always said, but truth be told, I really believed it could be more.  I wanted it to be more.  Recovery felt possible.  It had happened for others, why not Coleman?   And each year as I sit to write this blog, I look back and see what we have done and where we are.  I try to think what are we missing?  What can we do?  I make lists of things to try, doctors to call, articles to read.  But I am forced again to re-set my timeline, giving Coleman and me more time.  And I am forced again to measure how far we are from that distant, unattainable goal.  And it crushes me every time.  Coleman is never going to recover.  

  

In my sorrow I become a person I dislike.  I am irrationally jealous and angry at families who have children that are higher functioning than Coleman.  I forget momentarily that there are kids far worse off than him.  I am bitter at kids playing baseball in the field as we make our way to the park for Coleman to play alone.  I feel resentment as I approach the bus stop each morning near our house, seeing the kids piling on and laughing.  I glance at Coleman in the rear-view mirror to see him staring at the kids from his window as we begin our daily hour and a half ride to school.  Hatred boils up in me unexpectedly at places like Kidzone as we make our way past a birthday party full of happy children to a bouncy house where Coleman will jump alone.  I even lose the ability to enjoy watching my own daughters at their sporting events, so overcome am I by the swarm of kids running around the bleachers, laughing with each other, joking and running, and I look to Coleman and see him talking to himself, quietly repeating the words the boys are saying.

Ugh, being in that place of sorrow is not good for the soul, I tell you.  I cannot continue to focus on what Coleman is not.  So, this year, instead of focusing on and believing in recovery, I am going to just simply hope things get better.  And it will not be just lip service.  I promise to keep my expectations in line.  I will strive to be happy with each day, and remember that if Coleman is happy, I should be happy.  Of course, I’ll still work to improve things – if I can make something easier or better for Coleman, I will do it.  I will never give up on my boy.  But I will try hard to give us both a break from the Impossible Dream.  It won’t be easy, though, because that also means I have to find another way to get on The Ellen Show.  Anyone got any contacts?

Welcome Back Year Seven

Holy Shit, Batman, can you believe that we are on our seventh year of this blog!? 
I sure can’t and I’m pretty sure everyone that knows me can’t either.  But here we are, and I don’t want to bail now.  Well I do, really, because I’m lazy, but I won’t.  I won’t because even though autism is an absolute PITA and I loathe the day it came upon us, I appreciate that you come back each year, willing to read about our trials and tribulations.  I like to think you are cheering alongside me in our victories, however small, or standing ready to kick some ass with me on those morons that seem to disappointingly persist in this world, or, most of all, sitting beside me and reassuring me when the days sometimes feel dark and hopeless.   So Welcome Back again, dammit, and thank you for visiting.