Victories

Well, that’s another year in the books folks, and I’m feeling like perhaps I have leaned a little too far toward sad this year and for that I am sorry.  I try to be honest in these posts, balancing the good and bad, but sometimes my emotions get the best of me and spew on and on…. In any case, I want you all to know we are mostly happy, most of the time.  And I surely know we have a lot to be thankful for too.  We have many small successes every day, and with each day comes another chance to try.   

We’ve also had some big successes this year.  I’d like to tell you about possibly the two greatest home therapists that ever lived.  They began working with Coleman last May with a rough start.  Coleman was a teensy bit uncomfortable with them telling him what to do.  And by teensy bit I mean he was a fist-swinging wild boy.  He is small but he is strong.  Thankfully, the therapists held their ground and the initial aggression didn’t last long.  After a valiant effort from the wild boy, Coleman surrendered the battle and it’s been steady growth since then.  The best outcome so far is that they have taught him how to follow an independent activity schedule for play time.  The schedule requires him to go to a binder with two pages full of possible activities (they are tiny pictures stuck to Velcro in the folder) and select 5 activities to do.  He heads to the playroom, takes the first chosen activity off the shelf, does it from start to finish, and puts it away.  He takes the picture off the ‘to do’ card and puts it back in the folder.  Activity one complete.  He does this for all five activities.  BY HIMSELF.  And he is does it for TWO HOURS.  TWO HOURS.  TWO HOURS.  TWO MF’N HOURS.   Can you tell that’s a long time for Coleman?  Am I making that clear?  It is a legit eon.  And do you know the best part?  He loves it.  He asks to do it.  I don’t know how to put into words how amazing that is.  It is such a gift.   So take that, you stupid standardized test. J  This success will never be captured in that kind of data.

Home therapy wasn’t our only victory.  You know I’m going to talk about skiing, right?  Hell yeah!  Coleman had a break-out year - finally skiing independently.  In the past, his two instructors skied with him, one skiing backwards in front of him and the other following behind.  This year, they moved up to simply having him follow them; no backward skiing, no hand holding.  He did amazing.  Billy and I even took him out many mornings by ourselves, exactly the goal we have been working toward all of this time, and Coleman did unbelievably well.  He was almost too fast, at least for me.  He’s worked hard for so many years and he has made amazing progress. 

Our time at Loon afforded us many opportunities to take Coleman out to eat, since nearly every weekend we walked to Mountain Club for a drink and dinner.  Soon, Coleman began to ask to go and we found ourselves all looking forward to it.  The live music was a bonus, and thanks to the best-money-ever-spent Bose headphones, it never bothered Coleman at all.  He would walk around the restaurant a bit, go up and watch the band, and eventually sit back down.  When ski season ended and we were back home, as the weekend approached, Coleman would ask  “What do you want to do Saturday night?” and before I could even make a suggestion, he would jump in and say “How about we go to the restaurant?”  And who are we to disappoint the child?  J  So it’s become a routine of sorts, but one I’m not entirely upset about.

  

Last week, a group of ten of us were out for dinner, nine adults and Coleman.  He had his Ipad and headphones and was enjoying the hubbub of the restaurant.  He would get up from time to time, walk around and then sit back down.  Towards the end of dinner, an older woman was leaving with her husband.  As she left, she touched me on the shoulder and said “I’ve been watching.  You’re doing an amazing job.  You’re a good mom.”  And BAM, just like that, all the doubts and fears and mad-libbing craziness of my life disappeared and I was back to feeling like a Badass Bitch again.  J  

That’s all folks.  May we all be kind and help others to find their inner Badass.  Thank you for reading again, and see you next year.

Birds Nest Catching

I Cannot Die. Not ever.

We had Coleman’s 3 year review today.  It was, in a word, depressing.  Sometimes reality hits you softly and gently like a breeze you barely notice.  Other times it’s like a hammer to the head.  Today was the latter, unfortunately.  It’s not that the news was surprising – it wasn’t.  By standardized testing measures, Coleman has made little to no progress over the last three years.  I don’t put much stock in these types of test – they are poor measures of ability for this population and I think that is also true for Coleman.  He is more than those numbers show.  But I couldn’t help but think about the past as I drove back to work, wondering how my boy fell from what I would have considered ‘high’ functioning many years ago to where he is now:  setting goals like being able to fold a face cloth and not yell when people say hello to him.  I tried to not think about it, I turned the music up in the car and tried play upbeat music.  But it was too late and my mind was racing past all reasonable efforts to stop it.  It was a sobbing, messy ride and I had to sit in my car for another fifteen minutes by the time I got to work to let the tears and redness go away.  Ah, I know my little man is amazing but days like today when Coleman’s inabilities are starkly laid out neatly in charts and measures, and his need for so much assistance is so strongly spoken, I go directly to the worst thing:  what will happen when to him when I die?  I cannot die.  Not ever. 

Parents of children with special needs face a painful, unfathomable reality:  they will need someone to care for their adult children in the future when they are gone. 

I cannot even begin to express the very deep and personal agony of this.  I am absolutely terrified of dying.  I think about who will tell Coleman I am gone?  How will they tell him?  How will Coleman possibly understand where I have gone.   Will he think I have left him?  What if Billy dies too?  What then?  Will this heavy burden fall to our girls?  Where will they be in their own lives?  How will they care for Coleman?

The emotional burden is great because the reality is daunting.  The truth is that there is no safety net in today’ society for this population.  According to statistics, 85% of autistic adults live with their parents.  The national shortage of caregivers and the incredibly low wages paid in this area make the situation for our children ripe for neglect and abuse.  And articles like the one this week in Psychology Today underscore the problem we face:

What are parents like me to do to protect our disabled loved ones?  How do we learn to trust caregivers if there is so much abuse out there?  Often hidden cameras are not allowed, and even if they are, abuse captured on video may not end in conviction.  One parent in Massachusetts, Paul Joyce, has the evidence of his son being repeatedly beaten, on camera, and yet those responsible, even though found guilty, was given 18 months probation and ‘ordered not to work in this field again,’ according to Joyce.  The other perpetrator was simply ordered to write the Joyces a letter of apology.

Worse, I think, are parents who have to make this choice before death.  Parents who can simply no longer handle their child because they have become too big or too strong or too aggressive.  I will never forget the heartache my own mother felt when she had to place my severely disabled sister in a home – it nearly broker her.  She never got over it, and when Kiki died in the hospital from a perforated colon, my mother cried and cried that she was not there for her.  It was absolutely heartbreaking.  My mother’s story is the same story for so many hundreds of families.  It is unimaginable.  In a Facebook group for Parents of Special needs children that I am part of, this was written the other day:

I know this is the place I can go where people will understand my heartache. I moved my son out of my house last night. My nonverbal child who speaks a couple words a year told me, "No mama." as I left him. He's not too far away and I can visit but, it's not an ideal situation. The pain of choosing the least shitty option feels almost unbearable. Please pray for us. I am praying to God my son is not as heartbroken as I am.

Honestly, I do not know this woman.  But I thought about her all night when I read it and cried thinking of her heartache.  And I prayed to God, please let that never be me.  Please.  And today, after the IEP review, I prayed aloud again:  Please.  I can’t die.  Not ever. 

See what happens when I go off script?  I had planned a nice post as we approach our last day together and bam, reality hammer to head and I’m a mess.  I know I’m not dying.  At least I sure as shit hope not.  But the struggle is real my friends.  I’ll be back tomorrow sunny and cheery and we’ll end this year on a high note.  J

College

Most of you know that Coleman has two sisters – Abby and Emma.  As a family, we are hitting a milestone with Abby this year as she graduates from high school and prepares to leave for College.  Abby’s departure will be hard for all of us, but especially Coleman.   He adores her (and Emma) and even when they are at simple sleepovers with friends, he asks constantly when they will be back.  “Where is Abby?” he asks only minutes after she has left.  “She’s gone to her friend’s house but she’ll be back tomorrow” I tell him patiently.  “You don’t want her to sleepover?” he says, which means he doesn’t want her to sleepover.  “Well, she is sleeping over but she’ll be back tomorrow” I state.  A few minutes later he asks “When is Abby coming home?”  “Tomorrow” I reply.  This tiny conversation repeats about 800 times until bedtime at which time he knows she isn’t coming home and we have a mini melt down.   It’s the same conversation when Emma is gone.  So you can imagine what it’s going to be like when Abby (and then Emma next year) leaves for College this fall.  It’s going to be torture. 

We plan to use a social story to read to him when her departure draws near.  The social story will talk about how some kids leave and go live away at college and what they’ll do when they are there and that they’ll come home again to visit but then go back to college.  We plan to take him over to Cambridge to walk around the campus before she goes so when we say “College” it will have some meaning to him.  I think he will love the train ride so I’m optimistic that, in his mind, “College” will have a favorable mental association.  Like it does for most adults I know J 

This weekend Abby is at Harvard for Accepted Students Weekend, giving us a chance to very lightly introduce this new concept of college and how it will be associated with Abby being away.  We aren’t talking about anything long term but we are trying to use the terms “Abby is at College” and “Abby is at Harvard” as much as possible this weekend every time he asks where she is.  I’m hoping he’ll remember in September “College” and “Harvard” are not permanent.  Actually, I’m hoping I’ll remember in September that “College” and “Harvard” are not permanent.  Holy hell I’m going to miss her.  I think I’m going to need my own social story. 

Mad Libs

One of the basic teaching approaches with children with special needs is the prompt.  The prompt can be verbal or physical, whichever is needed to help get the child to do the requested task.  So for example, if you are trying to teach a child to brush his teeth, you might place the toothbrush in his hand, and hold your hand over his hand as you help him to brush.  As he starts to get the hang of it, you gradually fade the prompt, maybe only helping him to get the right grip on the toothbrush and then eventually not helping at all.  The same holds true with verbal prompts.  For example, after a story about a game of catch, you might ask:  What were the kids doing?  And to help with the answer, you would start with “They were playing ____” and then let the child complete the sentence.  You can fade it to “They were____” and then eventually when you ask, he can just answer without any prompt “They were playing catch.”  Simplistic examples but you get the point. 

Coleman apparently has learned in this way for so long that has become, for him, a way of communicating.  So that’s a problem that we are going to have to address.  Because my life has become an actual game of MadLibs. 

You remember that game that was so fun when you were like 10?  Hilarious, right?  Not so much at 50.

 

Coleman walks around asking me things and gives me partial prompts.  Today, driving to a birthday party, he states from the back seat “We’re finally going to the ___” and waits.  This is an easy one so I quickly respond “The birthday party!”  “Ohhhhh” he says in a tone that tells me I have answered incorrectly and to please try again.  “We’re finally going to the ___” he repeats and I pause for a second and then say “The trampolines!” because this is a trampoline birthday party.  “Ohhhh” he says again, more irritated.  Now I’m just flat out guessing.  “Store?”  <no response>  “Mall?” <no respons> until I finally have to just say “Coleman I have no idea what the answer is.”  “Hotel” he responds.  What the actual hell?  I was never going to get that.  We are not on our way to a hotel but I just say “Oh right! We’re finally going to the hotel!” and this makes him smile wide with satisfaction.  A short time later he says “I’m so excited for the ___” and totally forgetting the conversation we had five short minutes ago, I answer “The Birthday party!”  He nearly scoffs at me.  “Ohhhh” he says again and I realize my mistake.   “I mean hotel!  I am so excited for the hotel!”  He smiles again and repeats in a voice that I hope is not what I actually sound like   “I mean hotel! I am so excited for the hotel!” 

We arrive at the party and everyone is having fun jumping.  I jump with Coleman, trying to be sneaky bouncing and then stopping so the 17 year old kid watching doesn’t point to the sign on the wall that clearly states “ONE PERSON PER TRAMPOLINE”.  As we jump Coleman says “This hotel is ___” and waits.  “This hotel is so beautiful!” I say and he smiles and jumps some more.  “This hotel is so beautiful” he repeats.  Welcome to Crazy Town. 

The Mad Lib game is played all the time.  At the supermarket, in the car, at the house.  It’s the same game with entirely different answers every time.  Some days it’s a script from a show so I might know the answer, or at least be able to figure it out.  (I’m both proud and embarrassed at the extent of dialogue I know from some of his shows.)  Other days it’s completely random and not related to shows at all.   He starts a sentence and waits for me to finish it.  “The superheroes are____.”   “The superheroes are really tall!”  I’ve literally said that. Not really strong, but really tall.  Why? I have no idea but when you are playing Mad Libs all day you just shoot from the hip.   The game gets old and my imagination fails me and I can’t come up with decent endings to his sentences.  There are many occasions that smartass comments quickly come to mind that would make for absolutely hilarious but highly inappropriate sentences.  So I’ll consider it a win that I have not yet stooped that low. 

For now, we are going to have to figure out a way to fade the prompting that he is doing.  Not sure at all how we can do that.  But I have the help of some amazing BCBAs to figure it out.  Until, then, I’ll just try my best to be the most imaginative story teller on the South Shore.  Thank you for reading again.  I hope you ____ and we’ll see _____.  J

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.