A Regular Boy

The social group started on a Monday.  It was supposed to go from 4:30-6:30, but I planned on him only lasting about an hour.  Jen, the woman that does Coleman’s home services, was going to go with him. Katy thought it might help to have her there, at least initially, to help Coleman stay calm in the group.  And Jen had already proven to us how well she could get Coleman to do things with just the right amount of pushing and letting go.   And so, with our fingers crossed, Jen took Coleman’s hand and into the school they stepped. 

It was a little chaotic as every gathering of 12 and 13 year olds is.  There were roughly 10 or 12 other kids there, and after introductions, Katy had them work on a bonding activity:  to make an imaginary city.  There was a large craft table in the center of the room on which was laid a giant poster.  They were to make the city using anything they could find in the room, which was littered with everything from craft supplies and markers to Legos and wood pieces.  It was an exercise in imagination, and the kids scrambled around the room in a flurry of activity, talking and gluing and drawing and creating.  Coleman was soaking it all in, walking the perimeter of the room as he usually does, repeating small bits of phrases he heard as he passed, thrilled with the energy and excitement of the room.   Some of the kids asked him to help, and he maybe picked up a matchbox car and put it on the table, but that was likely the extent of his creative participation.  Not at all like the rest of this crafting family J   Still, despite his small input on the creative side, he found great joy in just being there, and smiled widely the entire time.  I arrived after the first hour, but stayed unseen in the hallway, occasionally sneaking a peek in at him.  He stayed the full two hours easily and, when it was over and he came into the hallway to see me, the first thing he said was “You can go to Social Group again tomorrow?”  J

I noticed, and Jen agreed, the kids were generally much ‘higher functioning’ than Coleman.  I hate to use those terms, since all kids have different strengths and weaknesses that aren’t always apparent – and one that can seem ‘high functioning’ may desperately struggle in other less obvious ways.  But even the level of conversation here was noticeable.  And understanding the abstract idea to create an imaginary city – wholly beyond something I think Coleman could understand.  But there was no doubt he loved it.  As we prepared to leave, Katy said she’d give me a call to talk about how it went. 

As we drove home I started to worry that Katy would think the fit just wasn’t good.  She wouldn’t be wrong, but the fit didn’t matter so much to me.  Even if Coleman didn’t quite get what was going on, he loved being there.  It was exactly the social interaction he was craving.  By the time Katy called I was a nervous wreck.  She said, after a few minutes, “I don’t think this is quite the right group for Coleman.”  You’d be proud that I held it together and didn’t burst into sobbing at that very moment like a four year old.  I said I understood but was disappointed because I could tell he really enjoyed it.   Katy said “I know he enjoyed it.  I could tell.  And I was impressed by how well he did.  But I think a slightly older group – kids closer to Coleman’s own age – would be better.  And if it’s ok with you, I’ve reached out to some of my former students, and I’d like to do a small group specifically for Coleman.”

I don’t even need to tell you anymore.  Knowing that this woman was going to go out of her own way and create a group just for my boy is the beginning and the end.  She did just what she said and that social group last summer was the absolute best and greatest thing Coleman has done in a very, very long time.  And the boys that did it with him?  Solid gold.  I am grateful every single second of the day for what Katy and those boys gave to Coleman:  a chance to be a regular boy.  And my God did he love it. 

The Start of Summer

Well this has been a first.  Seventeen days in and crickets. So much for providing you with some distraction during this time.  Thank you for all of the text messages and Facebook messages asking if I fell of the planet.  I’m sure I speak for many when I say it’s been a challenging few weeks. 

I’m trying hard to remember where we were last spring when we left off.  It feels like so much more than a year ago. 

For starters, you might recall that around this time last year Coleman had been exhibiting long staring spells along with vocal and motor tics, and as a result he was scheduled for a 24 hour EEG and MRI.  Well, surely it will stun you to know that my little man was a champ and wore those crazy electrodes on his head and carried that battery-filled fanny pack around with him for the full 24 hours.   I know, like snow on Christmas Day.  It was wonderful.  Even better, the results were normal with no seizure activity noted. So it was a massive win. 

Coleman also seemed very much on the upswing in terms of health, with the annual Fall flare-up fully behind us, we were starting a good run.  By mid-May he was wonderful – the fact that he cooperated with the EEG was evidence enough – but he was more cooperative across the board.  Less intense, less stimmy, less anxious, less OCD.  He was just happier.  The usual questions started each day:  “Do you want to go see…” or “We can go to…” and he waited for me to fill in his blank. And I felt my heart sink a little each morning as he looked at me wide-eyed with excitement, knowing I had nothing spectacular to offer.  He was desperate for peer social interaction - we just needed to find it.  It was around that time that I saw the Facebook announcement from Katy Boucher.  

Katy is well known both locally and nationally for her outside the box approach to working with kids with varying abilities.  She founded and ran Skills for Living on the South Shore for ten years, and her novel approach to teaching social skills to children and teens, built on the foundation of genuine opportunities for real friendship, gained her wide-spread attention and respect.  Her social groups were wildly popular so it was a great disappointment to see them end when Katy took a break to start a small private school based on social learning and hands-on education.  So it was with great excitement that I read the Facebook post announcing the revival of those famous social skills groups for the upcoming summer. 

Knowing the limited spots would fill fast, I clicked the link, quickly read the group descriptions, picked one and signed Coleman up.  As the date came closer I grew worried about how Coleman would fit in with these kids.  I re-read the group descriptions on line, and became even more anxious, concerned that the other kids would be very different from Coleman.  I finally decided to send an email to Katy about my concerns and in true Katy fashion, she called me right away.  She hadn’t ever met Coleman and as I described him she listened patiently.  She agreed Coleman sounded a little different than most of the kids she worked with.  She suggested we meet at a park one late afternoon before the program began.  She’d arrange for a few other kids to be there, and it would provide an opportunity for us to all meet and for her to see how he might interact with other kids. 

Of course Coleman was super excited when I told him we were going to the park.  “We’ll go to the park and you can play with some new friends.  I’m going to talk to my friend Katy, but you can play with the kids!”  I was trying to prep him that I wouldn’t be running around the park with him.  The playground we were meeting at was one geared toward older kids – it had a zipline, a large climbing structure and big swings.  When we arrived, Katy was already there with a few adults and several young tweens, including her own kids.  She was super friendly, and after our introductions, she called out to her son.  When he came over, she simply said “This is Coleman.  Can you see if he’d like to join you? He might need some help so if you could be a helper that would be great.”  And this sweet boy who was probably only a couple of years younger than Coleman, turned to him and said “Hi Coleman, I’m Tyler. Want to come play?”  Ah, his simple kind approach put me immediately at ease.  And apparently Coleman felt it too because he smiled and followed him up the hill toward the other kids. 

Katy was lovely.  We chatted and she watched Coleman.  A few times she went up the hill to say something to him or one of the other kids.  I nervously watched as Coleman stood separate from the others, just watching and not really participating.  And as they all ran down the hill, I saw Coleman stay where he was, staring and smiling, twisting his hands in delight as the kids ran past him.  “Coleman follow the kids!” I called out anxiously.  He walked toward them but stopped about half way.  He stood there.  He was smiling but continued to watch them.  I shot a glance toward Katy – what is she going to think? But she was just smiling.  We stayed in total about an hour.  Coleman interacted some but watched a lot more.  I knew he really loved this all – I just wondered if Katy would be able to tell.  “I know it looks like he’s not interested but he really is loving this” I said.  Katy looked at me surprised.  “Oh I can tell he’s interested.  Look how he watches?  I love how connected he is. I have met lots of kids who can do many things but who are completely uninterested in anything around them.  Coleman wants to be part of this, he just doesn’t know how.”  I felt a wave of relief come over me.  And she turned back to Coleman, and stared for a few minutes.  Then she said “I think that’s where we start.  Let’s do the social group.  Let’s work on trying to help him stay with a group. It’s simple, but I think that is where we need to start.  Is that ok with you?” 

I knew at that moment I was going to adore this woman.  And as we left the park that day, my heart swelled with gratitude and hope and excitement for Coleman.  I glanced back at him after we got in the car and said “Well, what did you think?” He smiled and asked “We can see my friends again tomorrow?”  It was the start of what would turn out to be a fantastic summer.