COVID-19

Well, this was not my best year in terms of keeping up with this Blog, but at least that’s consistent with Life.  It hasn’t been the best year. Covid-19 has us all screwed up.

I’m sure we’ll all remember these trying days for the rest of our lives.  For some of us, me included, it has been wonderful in many ways.  Most importantly, I have my health and so does my husband and family.  I also love having my girls home so much.  I love that as a family we go for more walks together, we cook more together, we play more games together.  We sit leisurely around the kitchen table for hours after dinner ends, chatting and laughing, in no hurry to leave.  There are no parties to run to, no concerts, no movies, no cruising around, no places to get to.  We just sit and talk.  And I’m very grateful for that. 

But of course it’s been awful too.  Remote learning is, at best, challenging and at worst, a complete waste of time.  I have a high school senior who is missing out on the many traditional events that define senior year, including prom and maybe even graduation.  I have a college freshman whose first year was abruptly cut short, and missed out on hundred- year old traditions at her school.  Both are struggling to finish the academic year, yearning for this all to just be over with. 

  

I’d venture to say, however, that as hard as this is for them, it is so very much harder for Coleman.

    

For starters, at least my girls understand what is happening.  They understand concepts like pandemic, social distancing, contagion, and vague time concepts like ‘someday’ or ‘soon.’   They know this is not forever.  They know they didn’t cause this.  They know they will eventually (God willing!) return to school and we will see family and friends again.  And they know how to keep themselves busy until that time comes.  Coleman has no idea what any of those terms mean, has no idea if this is his fault, has no idea why we can’t see family and friends, and has no idea why we can’t go to the restaurant.   And he certainly cannot keep himself busy during this quarantine.   

Coleman understands pretty much one thing:  He started a new school and it was great and then it was over.    

We’ve tried to explain to him what is happening.  At first I used a social story but even that was confusing.  So then I said that school was broken.  I wanted it to be clear that it wasn’t his fault.  "Sometimes things break," I said.  "SOMETIMES THINGS BREAK!" he angrily yelled back.  And since the girls were home too (which is very helpful) I said “See, their school is broken too!  It’s frustrating that school is broken.  It’s going to be broken for a long time.  And then it will be fixed and we can go see your friends again.”     He asks several times every day, and each time I say “I know you miss your friends, but school is still broken.”  “SCHOOL IS STILL BROKEN!” he angrily yells back.

Worse, I am unable to give him a specific time when school will be fixed, and he doesn't understand abstract times like 'soon" very well.  In fact, time and its passing are concepts he struggles with.  For example, we go to Florida each year for Thanksgiving and the countdown to when we go begins exactly the day we return.  We will literally land at Logan, and on the walk to the parking garage he will ask “We can go back to Florida tomorrow?”  This begins his constant year-long questioning of when we will go again.  We try to use phrases like 'not for a long time' or list for him things that have to happen first like 'First skiing, then soccer, then summer then Halloween and then we can go to Florida', but he doesn’t really get it until it's written on a date in the calendar.  Even then, at least once a week he still says “We’ll go to Florida tomorrow?”  Thus, you can imagine how difficult it is to provide a timeline for the return to school, when in fact a timeline does not yet exist.   

“You’ll see your friends tomorrow?” he asks.  “Well, no not yet.  School is still broken” I respond.

“You can see your friends after…” he says, waiting for me to fill in what comes after.  I wish I could say “You’ll see your friends after the curve flattens" but obviously he would not understand any of that.  Or I wish I could say "You'll see your friends in three weeks" and mark it on the calendar for him to look toward but I can't give him that either.  So, instead, I say “Soon, buddy.  When the school is fixed, we can see your friends” but 'soon' is too abstract and only irritates him further.  "I know this is frustrating” I say.  “THIS IS FRUSTRATING!” he yells back.  

His school is doing a zoom call once a day for an hour.  At first he refused to do it.  He has never been one for phone calls or face time so it wasn't unusual.  And, in terms of actual learning, this is of course not really working, particularly for a child that needs so much assistance.  But they do provide a nice social break and over the last several days, he is getting more used to the them.  Last night he even said "You can see your friends on the computer tomorrow?"  I was thrilled, and not only because I want him to remember these kids and teachers, and remember how much he loved being with them.  I was thrilled because it gave him something to look forward.  He is otherwise absolutely bored to tears.

We do try to fill his day.  We have a schedule that we make every morning.  It includes things like Do a Puzzle, Play with Blocks, Play with Legos, Play with Shapes (tanagrams).  It’s a pretty short list of activities that he can do independently (but Thank God and Kara and Jen even for these!) so we also add things like Go for a Walk, Play Zingo, Paint a Picture, Go for a Scooter Ride, Read a Book, play Go Fish, Play Sorry…  For all of these activities, he needs help.  Like hand-over-hand type help.   And because the damn rain won’t let up, and because Billy and I are both still working, and because we just can’t spend ten hours each day sitting beside him doing activities, he spends too much time on the computer and he’s miserable by 5pm.  It’s exhausting for all of us.  

Still, we recognize it could be worse. There are children that, without the structure of school and therapists, are regressing back to self-injurious behaviors.  Kids that are hitting their heads against the floor, kids that are smearing feces on the walls, kids that are aggressing on their own families.  And kids that have contracted this awful illness and are in hospitals, families fighting in courts to be allowed to stay with them.  Yes, it could be so much worse.  

So we will remain vigilant over the coming weeks trying to entertain our guy, even if it means going for walks in the snow in April.  Even it means starting Happy Hour a little earlier than appropriate to suffer through another round of Go Fish.  Even if I have to cheat and pre-arrange the cards in Candy Land so that the game is not excruciatingly long.  We will continue to answer questions about when he can see his friends again every hour, every day, because eventually we will have an answer.  Eventually, we will be able to put on the calendar in big letters for him to see “SCHOOL IS FIXED!” and then all will be right in his world again.  Until then, stay well.

Thank you for once again taking the time to read stories about our boy and our family. 

Birds Nest Catching!

Time for a Change

Well, we have only today and tomorrow left and I haven’t even touched on the biggest change that happened this past year.    

The rest of last summer was fantastic.  Coleman’s mood and health were both at their best.  School was going well, home services were going well, and weekends were going well.  It was beautiful.  Coleman was entirely enjoying the social group, and each Sunday he would eagerly ask about his schedule:  “First school Monday, and then Social Group Tuesday?”  I’d confirm it for him and he’d smile widely, repeating as he walked away, First school Monday then Social Group Tuesday.  By Tuesday morning he was giddy with anticipation, and as soon as he climbed into the car from school, he’d exclaim, “You have social group today!”

As the summer drew to a close, I started to prepare Coleman that the social group would be ending.  Understanding that things come to an end has always been hard for him, and this was no different.  Despite our efforts to prepare him, the last day came and went, and the following Sunday he said as usual: “First School Monday and then Social Group Tuesday?”  I tried to explain it to him again, but he was confused and asked again on both Monday and when he got into the car after school on Tuesday.  “Social Group is over, buddy” I reminded him.  “That means we can’t go there anymore.  But we’ll try to find a new social group for you soon.”  He was alternately mad and sad, but as the afternoon wore on he became used to it.  Still, the following week it was the same thing over again.  He went through his ritual of words starting on Sunday, and again on Monday, and each time I reminded him it was over.  It seemed to sink in finally because on Tuesday, after school, he climbed into the car, looked at me and stated sadly “You don’t have social group anymore.”   Ah, my heart.  “I’m so sorry Buddy but that’s right.”  And he turned away and said nothing for the rest of the hour and a half ride home. 

I knew that day it was time for a change. We needed to find a school for Coleman that moved away from the intensity of one-on-one instruction, and offered something closer to what the social group had offered:  time with other kids.   

I started making calls the very next day, and before long, I had a short list.  We had to inform the town which made the entire process incredibly stressful.  When you have fought hard to get your placement, it’s with extraordinary apprehension that you consider changing it.  But we felt strongly that Coleman needed a program more geared to socialization so we forged ahead.  Over the next few weeks we looked at several different schools - all of them offered something, but none jumped out as spectacular.  And then I learned about a program in our neighboring town, Scituate.

I scheduled a visit, and I asked Katy (from the Social Group) if she would join me which she graciously agreed to do.  I loved her perspective and her approach.  She saw Coleman through the lens of potential, and I needed someone like that with me.  I loved the Scituate program immediately.  There were roughly 13 kids in the class – that alone I knew Coleman would love.  And they moved around the building quite frequently – another thing he would love.  And they had gym together!  And art!  And a garden!  And it was in our community.  It was just one of those things that felt right.  As we toured the program, Katy and I kept smiling at each other like ooh he would love this!  Towards the end, we sat with the two teachers that led the Scituate group.  Unfortunately, they told us, based on a review of his records, Coleman was not considered a good fit for the program.  They were concerned about his behaviors.  I let out a sigh of disappointment as I searched for the words to say.  “He’s really a good boy” is what came out first.  And then “I think maybe he finds the long ride to school and lack of peer engagement frustrating and is bored to tears with one-on-one discreet trials.”  We talked a bit about that, about Coleman’s overall health and the implications, and then Katy chimed in.  “I think Coleman needs someone to believe in him.  He needs someone to give him a chance to prove that he can be more than he is.  He is a little guy that has faced a mountain of obstacles.  I truly think if you just meet him you will feel differently.”  Can you imagine for a moment how beautiful it was to listen to those words?  To hear someone, who believes in your boy as much as you do, implore others to believe in him too?  She is a gift, I tell you.  A gift.  

The Scituate team listened.  “Ok.  We’ll meet him.  But no promises.” 

They called me the next day:  Can you come tomorrow with Coleman?”  Holy bananas, I was hoping I would have time to prep my guy – give him some story, get him used to the idea, I don’t know – just somehow make sure he was on his A-Game – but there was no time, and I was lucky that had agreed to see him at all, so I responded “Of course” and we agreed to meet the next morning at 9.   

You know I went full-on Prayer girl, right?   I leaned on everyone I knew – even put it on Facebook – to please say a prayer for my guy.   And we tried to be all butterflies and rainbows about it with Coleman.  “Hey, you know, tomorrow we’re going to meet some new friends!”  I was all positive, all good energy, like I was taking him on a trip to Disney.  I'm not ashamed to say I even used the social group as a way to get him to want to go:  “It’s sort of like a new social group!  New kids and a new place!  It will be fun!”  Anything.  Just let him be on his best behavior.  

And he was.  It was flat out amazing.  He was happy, happy.  Loved being there. Loved the kids.  And a second visit the following week was the same.  He loved being there.  And they seemed to love him too.  As we walked toward the door to leave after that second visit, the team said “You were right. We think he’ll be a great match and we’d love to have him.  We’ll be in touch with a formal letter and we hope you’ll accept.” 

We did and in December, Coleman bid farewell to the teachers and staff he has known for the last four and a half years and on Jan 6^th began his first day at Scituate High School. 

Gus

 

Well, with Abby gone, and Emma’s departure looming in the following year (this year L), we were worried about Coleman.  He was so distraught after Abby left, we were really concerned about how would he handle both girls being gone. 

He’s going to be so lonely, we thought. 

He needs a friend, we thought. 

He needs a companion that will be here when everyone else is gone, we thought.

And, so, naturally, we got a dog.  His name is Gus.

Forget that Coleman is terrified of dogs.   

He’ll get use to him, we thought. 

He’ll grow to love him, we thought. 

Well, just to be clear, neither of those things is happening.  Coleman wants nothing to do with Gus.  So, yeah, it was a totally good call.  A momentary lapse in judgement that I will pay for over the next ten years.  That’s all.

(Don’t worry.  The rest of us actually do love Gus.)

Abby Goes to College

In the middle of August, Abby left for College.

With the help of Coleman’s home ABA team, we created a Social story for him called “Abby is Moving to College.”  The brief story explained in simple terms pretty much that she would go to a new school and she would live there.  In the weeks leading up to her departure, I read a social story to him frequently and I always tried to sound upbeat, like Abby leaving for College was the best thing ever.  But I also told him that it was ok to miss her.  “We’re going to miss Abby so much!  But we can always call her on the phone and we can visit her too.” 

The first time I read him the story, he was highly interested.  The first page read “Abby is moving to College.  College is a school for adults.”  He immediately looked up at me. “What time is Abby coming home?”  Coleman hates when the girls are out.  I explained that we were talking about something for another day, not that day.  That Abby was up in her room and not going anywhere that night.  We finished the story and he looked at me confused.  “Abby is going?”  “No today, but soon, buddy.  Soon she’ll go and live somewhere else.”  I tried to sound upbeat but saying the words out loud was hard for me too.  He didn’t want to read the story again after that, but we kept at it.  I think he understood something big was happening with Abby.  But he didn’t understand what. 

As the day of her departure neared, I taped large desk calendars to the wall – August through November - and wrote in all of the things he loves and looks forward to:  New Hampshire, football games, Halloween and Florida.  And then I added in big letters on a square just a week away “ABBY LEAVES FOR COLLEGE” and on a square in mid-October “ABBY COMES HOME”.   That night, after we read the social story, I took his hand and led him to the calendar.  I pointed to the square on August 20^th and said “In just a few days Abby’s going to leave.  But look, see this,” I said, and slowly slid finger down through August and September, landing on the weekend in October, “she’ll come back and visit here!  She’ll come back and we’ll give her a big hug!  And we can call her and talk to her anytime.”  He stared at the block with her name in it, and then looked at me blankly. “Abby is leaving?” he asked.  “Not today, buddy.  But soon.”

We had talked to Abby about having a conversation with Coleman.  It might be good for you to have a talk with him, we said.  So, on the night before she was leaving, Abby sat down with him.  “I love you Coleman.  Tomorrow, I’m leaving for college.”  And that was all she got out before the tears came.  She was sobbing and I gave her the look like this is not helpful, and through tears she said “I’m sorry, I just can’t say this to him.” So that went really well.    

Over the days after she left, Coleman would frequently stand in front of the calendar, just looking at it. When I approached him, he would simply ask “Abby will be home soon?”  It was heartbreaking honestly.   So, when she called a few weeks in and asked about bringing her some things she forgot, I said “What do you think about me bringing Coleman?”  She had only been gone two weeks, but how he missed her. 

We planned for a quick visit that Sunday and on Saturday I said to Coleman “would you like to go visit Abby tomorrow?”  He nearly jumped up and down, was so visibly excited, that I felt like it would be perfect.  As we drove in, I reminded him “We’ll see Abby, give her a hug, have lunch, and then we will come home. Abby will stay at college and we’ll see her again soon.”

It was a perfect day.  Coleman was thrilled to see Abby and we all went out for lunch.  Everything was great until we had to leave.  “It’s time for us to go home Coley.”  He stood still beside her bed. “Abby is coming home?” he asked quietly.  I know he knew the answer.  “No buddy, Abby is staying here.  But we can visit her again soon, ok?”  He snapped back angrily “OK!” and remained sullen as we walked out.  Still, no meltdown and no big scene so that was a win.  As we walked back to the car he repeated over and over ‘Abby is staying here. You can visit her again soon.’  He was so sad.  I stopped and knelt down beside him.  “I know you are sad.  I’m sad too.  We miss Abby but we will see her again soon, ok?” and I got the angry “OK!” again.  But I know he understood. 

He was much better by the time we got home.  He went to the calendar again.  “We’ll see her soon, don’t worry” I said.   And I left it at that.  As hard as the day was, I think it helped him.  After the visit, he learned that it he was going to be ok.  He learned that she was somewhere else, but not far.  He learned that she was living, just not with us.  Most of all, he learned that our love is so great and so powerful and it stays, even when we are apart.   I learned all of the same things too. 

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.   

Welcome Back!

I considered briefly that this might not be the best time to blog.  I considered that certainly during this time there are far more important and serious things going on.  I considered that amid a global pandemic, our family’s challenges and victories seem both insignificant and indulgent.  I considered that you all might be sick of me and this blog.  

But then I thought in fact, it is precisely during challenging times such as this that you all could use a break.  Quarantining for several weeks can make you cray-cray.  Now more than ever you need a distraction.  And so, because I am selflessly here for you, I am ready to once again expound on the ridiculousness that is my life.  Besides, you can’t possibly be sick of me yet.  It’s only been seven years.  Welcome back friends, and thanks for coming.