Thank you.

Well I just re-read what I wrote below, and for the love of God, I’m certainly making up for the last month of silence.  I apologize in advance for this lengthy post.    

I want to start by making one point very clear:  we were right, the behavior we saw over the prior 6 months last year really was not Coleman.  He could no more help his behavior than a drunk could help slurring his words. 

We had already treated Coleman for internal inflammation as a result of the active Lyme, EBV, and food allergies over the past two years.  And with good success – he was thriving.  But his sudden behavior change this past year prompted new testing which revealed that the EBV virus was surging ahead yet again.  The results were higher than ever.  The doctor ran another panel of tests that measured circulating levels of four autoantibodies in Coleman that were directed against specific neuronal antigens.  If elevated, the results would indicate that the inflammation had moved to Coleman’s brain and would certainly help explain the extraordinary slip in behavior.  All four of Coleman’s results were highly elevated.    

Autoimmune encephalitis is more common than you might think.  Although there has historically been much debate about it, recent discoveries and advances in science have provided much needed credibility to the condition.  The symptoms of brain inflammation look remarkably familiar to what many children on the spectrum experience:  sudden OCD, aggression, sensory overload, impaired motor function and more.  Books like Brain on Fire (Susannah Cahalan) and The Neuroscientist Who Lost Her Mind (Barbara Lipska) detail vivid accounts of descents into temporary madness as a result of brain inflammation.   Originally, research indicated Strep as the cause of the neuro inflammation but more recent research and discoveries reveal that many chronic infections (Lyme, EBV) left untreated can also cause the same reaction.  Furthermore, we learn more everyday about the gut/brain connection and how our compromised food chain is implicated in the process.  Many specialists believe now that brain inflammation may be a significant factor in autism, schizophrenia and Alzheimer Disease.  And wider recognition of the condition is evidenced by the recent growth in treatment centers for PANS (Pediatric Autoimmune Neuroencephalitis) across the country (including Mass General).  So we are making progress in this area.  Slowly but surely.  I am hopeful that we are nearing a time when the medical community will help to form more cohesive and consistent diagnoses and treatment options for children and adults suffering from autism as well as other disorders. 

And I hope that time comes soon - this nation’s pandemic isn’t going anywhere.  My stories are every other autism family’s stories.  We are everywhere.  Last week the CDC released new figures – 1 in 59 children has autism, up from the 2016 figure of 1 in 68.  As if that isn’t staggering enough, you should know that the data is 12 years old and is not a national sample.  Briefly, the CDC collects data on 8 year old children from about 11 different states who were diagnosed with autism.  They analyze the data over 4 years and then issue the report.  In other words, this year’s data (2018 release) was collected in 2014 and is based on kids born in 2006.  It does not consider any children born since 2006.   Need I remind you that it’s now 2018?  But the CDC has another branch, The National Center for Health Statistics, which issues another report called the National Health Interview Survey.  This report is nationally representative survey collected over a 2 year period which gives a more immediate look at autism rates.  That report, issued in November 2017 and based on data collected from 2014-2016, revealed an autism rate of 1 in 36.  And for boys the rate was 1 in 28.   Let that sink in for just a minute. Think about what our adult population is going to look like in 20 years?  At what point do the alarm bells sound?  The press barely covered either release, and those that did largely regurgitated the same bullshit mantra promoted by the CDC that proposes broader definitions of Autism and better efforts in diagnosis have driven the increase.  Really?  Where are all the autistic adults today then?  Dr.  Stephanie Seneff, a research scientist from MIT has made the dire prediction that by 2025, one in two children will be autistic.”  ONE IN TWO.  Do you think alarms will sound then?  At what rate do we move from passive acceptance to complete outrage?  God help our children and their children.  

As for Coleman, we are grateful we have found a doctor that is keen on helping children affected with autism.  And we are following a plan, treating Coleman with strong immune builders and anti-inflammatories.  And knock on wood it seems to be working.  He is laughing again, watching his shows again, and so, so much happier.  It’s like he shed that nasty layer that had enveloped him for the last six months.  And the improvements are across the board - school is seeing the same thing and they are as thrilled as we are.   Of course, we have many new bad habits he picked up during this regression that we’ll need to address but we are on it.

We are also taking this rebound in health as an opportunity to make some pretty drastic changes for Coleman.  We have hired a behaviorist to come to the house 3 days each week to move Coleman off of the computer and to learn to utilize his time more productively and to generalize everyday living skills.  We have enrolled him in weekly speech therapy to help him learn how to effectively communicate his needs, building on his functional communication goals in his IEP.  We have purchased training equipment similar to what he uses in gymnastic class to continue to build on his physical strength.  And we upped his bicycle-riding game this year with a bigger and better new bike.  This August, we are enrolled in a program that teaches children to independently ride a two-wheeler.  I can hardly wait.  As always, we continue to seek out social opportunities for Coleman.  Trust me when I say they are sporadic.  But thanks to South Shore SNAP (Special Needs Athletic Partnership), Coleman attended his first ever boxing class last week.  Offered at the Hingham Boxygen location, the program is fun and the team up there is absolutely top notch.  After initial trepidation, Coleman laughed and really enjoyed the first class (although he would not put on the gloves, so we are working on that.)  And we have SNAP baseball and soccer also coming up.  Coleman continues to need guidance in these activities but with every new chance he grows a little more.        

Perhaps most importantly, and what I am most excited about, is the new “Buddy” teams we have working with Coleman.  Desperate for social involvement, Coleman asks every day “what can we do today?”  When I remind him it’s a school day, he simply moves on to “what can we do after school?”   I struggle to come up with things, and weekends are the absolute worst.  “What should we do today?” he asks the moment he wakes up.  I try to sound excited and say things like “How about we go to the park!?” or “How about we play ball?!!” and he simply looks away for a moment, and then asks “Maybe you can call your friends?”   He means his friends, except Good lord, he doesn’t have any.  I try to reach out to some folks nearby who have children that know Coleman but it is difficult as I don’t want to pressure them and I understand kids have busy schedules.  So to pacify Coleman I often resort to lying.  I say “Ok, I can try.” And I pick up my cell and pretend to dial:  “Oh hi! It’s Coleman’s mom.  Can Johnny come over to play today?  No?  Oh okay maybe another time” I script this fake call out loud so he can hear and when I ‘hang up’ he stares at me.  “Maybe they can come tomorrow,” I offer optimistically.  He walks away sad, saying unenthusiastically “maybe we can go to the park.”  It’s like ground-hog heartache every Saturday.  So I put up a post on our town’s Facebook page looking to pay a teenage boy to be a ‘buddy’ to my boy for one hour a week on Saturdays.  And if you’re wondering if there are still good people left in this world, I can attest that there are because I was overwhelmed with responses.  Tons of boys in the high school responded – kids on various sports teams, kids involved in SNAP or Best Buddies, or kids who weren’t involved but just cared:  they all offered to come and play with Coleman.  And I had even more calls from parents saying their younger child would love to be a pal for Coleman.   I was so moved, so elated.  I actually considered for a moment booking them all!  His day would be neatly packed from 10am to 6pm both Saturday and Sunday with kids coming every hour to play.  Seriously, I’m not joking when I say I mentally played out that option several times.  But I know also that while Coleman craves this social interaction, he is not really able to effectively participate in it yet.  He doesn’t have the correct language skills or play skills to truly play – which is precisely the reason that having someone to play with is so important.  So against my “Go Big or Go Home” attitude, I opted to go slow and ultimately hired a neighborhood high school boy who used to be a friend of Emma’s.  He is honestly amazing with Coleman.  It’s taking some time, but Coleman is warming up to him and they are starting to have a nice time together.  We also have two boys that are true peers of Coleman – they are his age and one of them is a neighbor as well – that are coming over weekly or as often as their schedule allows.  These two boys are old souls - kind and gentle and loving.  I couldn’t have hand-picked a better duo to spend time with my boy.  And Coleman loves them.  Finally, I’m doing my best to take advantage of on-the-moment offers to play for Coleman.  In the past I would have shied away from this – knowing it takes Coleman some time to warm up to kids, and knowing it takes some time for kids to understand Coleman - but I promised myself for Coleman that I will make every effort.  So when a friend waved at me in a parking lot on Saturday, stopped her car, rolled down the window and asked “Is Coleman home this afternoon?  My boys are free” I was like damn right he is.  And, although there was a bit of chaos at the start (Emma’s friends were leaving while the boys were showing up and Coleman doesn’t do well with that kind of transition) and Coleman initially yelled “GOODBYE BOYS!  IT’S TIME FOR THE BOYS TO GO HOME!”, he managed to recover and the rest of the hour went really well.  All of these social experiences I believe are truly good for both parties, but they are like a drug to Coleman – they lift him for hours after the actual interaction.   We’re feeling very blessed to live in a community where so many people care and are willing to help.

   

Well, I’m finally done.  How was that for a let-me-rant-on-and-make-up-for-lost-time kind of post?  Are you still here?  J   Thank you for reading again today, and each of the last five years.  You all help me to be a better person.   I’ll close finally by adding a shout-out to my fellow autism moms.  I heard from so many of you after my last post.  Thank you all, I feel you.  We are in this together.  Hold onto hope, it’s a beautiful thing.

See you next April.

Birds Nest Catching

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. 

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.  :)