Kentucky

 

I have always assumed that someday, when Billy and I are no longer here, Abby and Emma would take care of Coleman.   I never spent any time thinking about it past that statement.  It was just matter of fact, of course that was how things would go.  I honestly didn’t want to spend any time thinking about, much less planning for, that eventual scenario.  I still don’t. 

But this past year something changed.  It started when my good friend Leslie told me she was working with a group of parents from California to build a new housing complex for her son (who is also autistic) and other individuals like him.  The undertaking was massive, and she had been flying out to the West coast every month to meet the group and move the initiative forward.  So he’ll live there?  Without you?   Even asking the question out loud made my stomach hurt.  But Les was all business:  We won’t live forever and this can’t become my daughter’s problem to figure out.  

I thought a lot about that afterwards.  In meetings.  In bed.  In the car.  And I thought about my girls.  This can’t become my daughter’s problem to figure out.    

It was then that I started to think about other options for Coleman.  What kind of place would work for him?  What would his day look like?  Who would do things with him? What about his diabetes?  It was unbelievably heartbreaking to even think about.  Still, I forced myself to consider that maybe there was a place. 

Around the same time, I learned about a place in Kentucky for kids and adults with special needs.  I looked into it and wowee kazowee it was incredible.  It’s this magical nirvana of a place – it looks like a college, with girl and boy dorms, tons of recreation and activities – they are scheduled 7 days a week.  Their motto is ‘Life Long Learning” and they have quite a population – from like 7 years old to 75 years old!  I called and spoke to the program director.  She gushed about the place and all I could think was “You had me at Hello” 😊  I loved everything about it, except that it was in Kentucky.  My whole family is here.  Billy’s whole family is here.  I wondered if we could start a new life in Kentucky.     

Christmas came around and the girls were home for break.  One night while Abby and I sat in the kitchen sipping wine and chatting, I thought about Leslie’s comment. This can’t become my daughter’s problem to figure out.   I brought out my phone and showed Abby the place in Kentucky.  What do you think?  She took my phone and was scrolling through the website.  This looks incredible!  If you know me by know, you know that response only made me more sad, because I am crazy emotion lady and I wanted her to say That is place is ridiculous and besides I’m taking Coleman.  So I cried and she cried and Billy walked into the kitchen and turned around and walked right back out. 😊  After our little cry session, Abby looked at me seriously.  My whole life I have known I will have Coleman some day.  I love him and I am ready for that. Emma feels the same way.   I didn’t argue with her, and instead hugged her.  But in my heart it was the first time I felt the absolute enormity of what I was asking them  to do. 

The girls went back to college a couple of weeks later and Billy and I went out to dinner.  We talked about the girls and how they would be graduating this year, and how they have so much life ahead of them.  How wonderful it is to be so free.  We talked about how much life we have lived and loved, but how hard too things can be with our little man.  How challenging it is for him to do so many things and how the world shrinks smaller and smaller for him, and therefore us too, and that many of the freedoms we once enjoyed are gone.  We accept these things easily, focusing on our blessings and not our shortfalls, and that we would live this life again every single day, every single minute because he is our greatest boy and we love him beyond measure.  Finally I said what we were dancing around.  We cannot ask the girls to take care of Coleman when we are gone.  The ask is just too great.  We sat in silence first, and then in tears, and our poor waitress came to the table at just this time and said apologetically “I’ll give you some more time with the menu.” 

So that is the very long story of how we decided to move to Kentucky.  😊

I’m kidding.  Sort of.  We’re finishing Marshfield, of course.  That’s the first priority.  But we’ve acknowledged that this isn’t the end.  There is one more step to take for our boy and it will be the hardest.  Maybe it will be Kentucky.  Or maybe we’ll build a Kentucky here.  Think big, folks.  Big Thinking precedes Great Achievement. 

Thank you again for following this year.  I apologize for the dismal performance on posting. I promise to do better next year.  Until then, Birds Nest Catching.   

He's Sweet

 

It’s a sunny, hot day in Florida.  A woman is standing across from me on the pool deck, rustling through her beach bag for sunblock as her anxious child steps toward the pool steps.  She pulls him back by his shirt.  You need sunblock, she says.   Like most 4 year olds, he is pulling away, moving around, twisting and turning, making the sun block application particularly challenging.  The mom sighs, finishes, and then slides his arms through the colorful swimmy, securing it closed behind his small back.  She takes his hand to walk to the pool, but he quickly pulls his hand away and walks confidently beside her, onto the steps and into the water.  She sits down on the edge of the pool, dangling her legs in the water, watching her boy as he chatters on and on to himself, kicking and splashing, oblivious to anyone else in the pool.  The are several adults sitting around the pool edged and in the pool.  They all smile at the happy boy, laughing as he splashes around.  After a while, he tires from the pool and his mom stands to help him out.  She unhooks the swimmy from around his waist and uses the small pool towel to dry him off.  He’s just a child, and the small towel easily wraps entirely around his little body.  Wrapped like a mummy, she lifts him onto the chaise and hands him a bag of apple slices.  She kisses his wet head.  He smiles at her and I hear her say I love you and he yells I love you too!  and everyone around them smiles.  The mom looks up and catches me staring.  He’s sweet, I say with a smile and she smiles back.

I look back at Coleman  - he is standing on the pool deck, staring at the birds.  He loves birds lately, and watches completely entranced as they take flight.  He stares at them, turning every which way to keep their magical path in his view.  It’s time to swim, I say.  But he doesn’t move and doesn’t take his eyes off the sky.  I reach for the sunblock and start to spray his neck.  He pulls away, but I pull him back by his shirt.  I spray some more, and he squirms just like the 4 year old, until he finally demands ‘All done!” and I sigh and drop the sunblock can back into my beach bag.  I feel eyes on us as I take his hand and pull him from his spot on the deck toward the pool steps.  He’s not a great swimmer, but he’s taller than the 4 foot depth of the pool so steps easily into the warm water.  He glides to the center of the pool, talking in scripts to himself, and looks up once again toward the sky, scanning the birds.  I sit on the edge of the pool, feet dangling in the water, watching my boy.  The adults from earlier are still there, sitting around the deck, wading in the warm water.  I can feel their eyes again.  On him, on me.  I look up but they look away.  I resist the urge to explain Coleman and his scripting and his new fascination with the birds.  After a while, he is ready for a snack and I take his hand to help him out of the pool.  I take off his sun shirt and I can feel the eyes on us again.  He’s small but has the body of a man.  I look up but they turn away.  I drape the towel over Coleman’s shoulders and guide him to the nearby chaise where he sits under a big umbrella.  I open his favorite yogurt and hand it to him with a spoon.   I kiss the top of his wet head and whisper I love you but he doesn’t say anything back.  I take a deep breath and avoid looking toward the pool.  My gaze lands instead at the mom and boy we saw earlier, still sitting in the chaise across the pool from us.  She is looking at Coleman, and then me, but she doesn’t look away when our eyes meet.  He’s sweet, she says and smiles.  I smile back.  And that made everything better.  

It's Happening

This is a little bit of a cheater post, but I was thinking this morning about how long this project has been in the making.  I remember so many conversations with people, talking about how could we do this, when should we do this, why would should do this.  And then I remembered this post.  I wanted to re-share it because I remember this day so vividly, and the ache I felt for my boy.  That ache never changed.  I thought then, and still think now, how underserved this population is. How unfair it is that typical kids have jam packed activities and friends and places to go but so many of our kids sit at home, bored without friends, without activities, and without places to go.  A forgotten population, as young kids and certainly as young adults.  I have always wanted to change that. I didn't know how, but I wanted something, someday, somehow.  I posted this on April 12, 2017.  It's taken us seven years but the time is now.  Something, someday, somehow is here.    

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.  :)

THE EPIC CENTER

 

I think I’ll start this year with an update on the property we bought last spring and where we’re at.  We’ve spent A LOT of time at the house over the last year.  It’s been eventful and chaotic and full of not-so-fun surprises.  I mean, what did you expect from a house that is nearly 350 years old?  We jumped in with our hearts and not our heads.  We knew there would be issues.  We were right.  

We’ve remedied most of the basics, including fixing a main sewage drain that was cracked and leaking into the basement, installed a new heating system (there was no heat until late December), and at least began to do some landscaping maintenance with grass, plantings, and tree trimmings.  We have removed almost all critters from the house and the barn.  There still remains at least one small squirrel or chipmunk in the barn.  He’s a sneaky fellow, evading our best laid traps and taunting us with his audible scurrying.  He’s really tempting our patience, but he is small and we are big and we will prevail. 😊

In addition to chasing critters, we’ve been moving along with the architect plans for the build out.  It’s a wishful, beautiful plan – we preferred to start with the best possible case, and then scale back as needed.  We fully expect it will be needed.  We also met casually with the town for a preliminary review of the plans – obtaining input from conservation, the building department, the water department, and zoning.  They were excited about the project but there are some concerns of course that we’ll need to address.  We are working on that now.  We hope to submit final plans for formal approval in the next couple of weeks. 

Despite the many bumps and challenges, the journey so far has been quite uplifting.  Overwhelming at times for sure, but still uplifting.  It is an amazing feeling to have faith in an idea that started more than 10 years ago and to finally take a chance.  To have a vision of what this place can be someday.  What it will be someday.  To picture all of the programming, all of the activities, and all of the opportunities that will be available for so many kiddos.  Most of all, to be part of creating something that is so much bigger than just us and our boy.  It is an absolute privilege and a joy.   

We are excited to move onto the next phase of the project.  As soon as our social media accounts are final we’ll share the pages – we hope you will follow along.  We’ve got an exciting year ahead. 

Welcome Back, Year 11!!

 

I ain’t gonna lie, folks.  Sinking a little bit over here at Camp Chaos, literally and figuratively, and April crept up on us without knocking.  I am grossly unprepared.  For this blog, for what comes next in our plans, or even for what comes tomorrow if I’m being honest.  By the Grace of God we will make it through another week.  But I’m going to pull it together folks, have faith.  And I shall come to you with glimpses into our strange, sometimes pathetic, but always love-filled, life.  Thank you for coming back again. 

(Coleman laughing at the sitcom that is our life.)

The Start of Something New

 

When I started this blog 10 years ago, I wanted so much for people I knew in town to get to know Coleman a little better, to see him as the wonderful boy that he was, and not as a child to look away from or feel uncomfortable around.  And through the years, I think a whole lotta folks learned about not just Coleman, but lots of kids like him.  And that makes me immensely happy. 

Over the same time, I have expressed frequently the loneliness of autism.  The isolation that so much of this population faces is simply awful. I wrote here specifically about one day that was really difficult, and it was on that day, six years ago, that the idea of doing something big was planted.    

Over the past two years, Coleman flourished with his new school peers, sharing in multiple joyous outings with them.  We also learned more about aging out of school at 22 and what life might look like after that time for my boy.  Both of these things fanned the flames of wanting to do something more for this population.  We started talking and thinking and looking.  We talked ourselves into and out of ideas weekly.  As our vision narrowed, we visited one particular property multiple times, thinking how we could transform the place into the idea in our heads.  We ultimately passed on the opportunity, convinced that timing was wrong, that we needed to get the girls through college first.  Really, though, we were nervous, feeling way over our tips about venturing into something we knew very little about in terms of execution.  Let someone else do it, we thought.  Someone who knows what they’re doing.    And there was some relief when we said no.  So we took that as a sign.  But sitting snugly next to relief was regret, as we learned a few months later that the property went under agreement.  “It’s fate” we thought.

Many months later, the property came back on the market.  “We are not going back down that path” we agreed.  But on a solo visit to see Emma in Vermont a few weeks later, I had a lot of time alone in the car to think.  And that is never good.  😊  I called Billy.  “You’re going to kill me but I think we should buy the property”.  And as fate would have it, Billy was thinking the exact same thing and had already called the broker to set up another visit.  We went when I returned from Vermont, walking through the barn, house and around the land for the umpteenth time – trying to envision what the place could be, and not what it was – which was an almost 400 year old farmhouse on almost 5 acres.  Silently we stared at different areas, nodding as we went, yes, this could really work.  It could be amazing.  And we did what we do best – acted with our hearts and perhaps not our heads - and bought this run-down, neglected, ancient beautiful property. 

We have an enormous amount of work ahead of us.  Our plan is to create an enrichment center for kids and young adults with special needs.  We have great hopes and plans – creating a community within a community, a social club with yoga, a gym, music, art, cooking, basketball and tennis, outdoor games and movies and so much more.  Billy and I have a notebook full of ideas.  And we are just going with it.   Figuring it out as we go and leading with our hearts.  I have no doubt it will be amazing. 

We will need help.  A lot of it.  And I know many of you will be there, working with us to transform this shared dream into a reality.  It will be the greatest labor of love we will know, and it will be worth every droplet of sweat and every tear we shed.  We look forward to sharing our journey with all of you.  It’s going to be Epic.

Thank you for reading again this year. 

Birds Nest Catching.

Birthday Trolleys and Christmas Buses

 

Coleman doesn’t like birthdays.  At least not like most kids.  He doesn’t like presents at all, doesn’t like birthday cake, and definitely doesn’t like when everyone sings “Happy Birthday” to him.  But he does love when he gets to be with other kids, and because the rest of this family loves parties, we try to do something extra special and fun for his birthday each year for him.  This year, we rented a trolley and took a group of kids to a trampoline place, had a party there and then rode with everyone back on the trolley.  Without a doubt, the best part was the trolley ride.  The kids all had a great time, singing and dancing and laughing.  Coleman even tolerated the Happy Birthday song!  

The night was so much fun that we did it again at Christmas.  I connected with all of the parents in Coleman’s class and we all chipped in together and rented a big party bus and took all the kids to see the Christmas lights at La Sallette and Gillette Stadium.  We ordered pizzas for the bus ride and cupcakes sang Christmas songs the whole time.   There may have been adult beverages for the parents too.  It was a really wonderful evening, and I know we weren’t alone feeling blessed to have such a great group to do these things with.

At bed time that night I asked Coleman, “Did you have fun?  Did you like the Christmas music and lights?”  He bounced around the room repeating me “DID YOU HAVE FUN DID YOU LIKE THE CHRISTMAS MUSIC AND LIGHTS” and then looked me directly in the eyes, smiling and yelled "YES!”   

We talked about both the Birthday party and the Christmas party for weeks after they occurred.  Coleman would say things like “Remember we went on the bus for your birthday?” or “Remember we saw the Christmas Lights?” and when I answered yes, I remembered, he would immediately follow with “We can go again when?”  He loves and craves these social interactions, just like the rest of us.  And it got me thinking.  Wouldn’t it be nice to have a place that did events like this for kiddos like Coleman and his pals?  A place where kids like them could meet up and do things socially?  And I realized I’d been saying and thinking that for a very long time.  And maybe it was time to stop thinking and start acting.