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. 

Turning 18

Coleman turned 18 this past year, and with that, a new perspective came clearly into vision.

First, we had to apply for legal guardianship of our boy.  This required new assessments from a psychologist, a social worker and Coleman’s doctor.  Abby and Emma also had to sign, essentially validating for the court that Billy and I were honest, and the Coleman truly was, in their opinion, unable to advocate for himself.  The assessments were done via conversations with Billy and I, with his teachers, and watching Coleman perform some ordinary activities at school.  They also reviewed all of Coleman’s previous records and assessments.  It was no surprise of course that they determined what we already knew to be true: 

Coleman Fennelly is an 18 year old young man with primary diagnoses of Moderate Intellectual Disability and Autism Spectrum Disorder (ASD), Level III (Requiring Very Substantial Support). He also has several complex medical conditions that require constant vigilance and awareness, not only of medical interactions but also the need to monitor his health status on a daily basis. He is not able to state, or advocate for, his own health needs. Because of his level of Intellectual Disability and his inability to understand his own medical conditions, or receive and analyze information required for other major life decisions, Coleman will require a Full Guardian to make decisions on his behalf and advocate for his ongoing needs.

It was a bit humbling, honestly, asking the court to provide me with the legal right to something which I have always taken for granted.  The right to speak for Coleman, the right to seek out and choose treatments, the right to pick therapies, the right to fight for more, or even the right to accept less.  It was momentarily terrifying to think of this being denied, leaving Coleman to fend for himself or a random, nameless court appointed social worker to make decisions for him.  And I thought then, and still think today, of the many parents that have walked this road before me, and the many that will follow after me, and how very, very sad this whole process is.  And what’s worse, it’s just the beginning.  Guardianship marks the first official step forward on the path toward the Turning 22 Cliff that is, for us, just four short years away. 

The state of affairs for individuals with special needs over the age of 22 is nothing short of appalling.  Lack of funding and programming means so many kids simply have no place to go.  Imagine being in school for the last 12 or 13 years, with friends and teachers that know you and care about you, with activities to do, skills to work on, community outings to grow through, and then, on the day of your 22^nd birthday, it all ends.  Literally.  Coleman’s birthday is October 4^th.  He will go back to school the September of his 22^nd year for exactly 1 month, and his last day will be on his birthday.  I cannot even fathom the thought – how do we explain that?  And without a placement??  Sorry pal, no more school.  No today, not ever.  No place to go, nothing to do.  It is a cruel, lonely, devastating reality for so many kids today.  Beyond heartbreaking.

Simply can’t accept it.  That’s all.  I won’t have that for my boy.  Will Not Let That Happen To My Boy.

ICAN('T) RIDE

 

Last summer, the ICan Bike program came to Hingham.  The program is run by I Can Shine, a non-profit organization that provides learning opportunities in recreational activities for individuals with disabilities.  The bike program is pretty amazing and known nationally for their success in teaching kids to ride a bike, with over 80% of program participants successfully riding a two-wheel bike after the one week program.  When it was announced the program was coming to Hingham (another great effort by the Hingham SNAP folks in providing opportunities for kids with special needs!) I signed Coleman up immediately.  When I mentioned Coleman would be attending, lots of friends and acquaintances raved “My guy learned to ride in that program!” and “I never thought my girl would ever ride and that program taught her!” so I was pretty amped up about Coleman starting.

The program was amazing, and the folks and volunteers that led it were fantastic, and most kids did have great success. 

I just want to add, and I’m not sure who out there needs to hear this, not everyone learns to ride.  That’s all. 😂

The Prom Wedding

 

An unexpected note came home in Coleman’s backpack last April. “Would Coleman like to attend the Junior Prom?” Honestly, it was something I had never even considered. Never. There were four “juniors” in Coleman’s classroom, three girls and Coleman, and they were each entitled to attend the high school’s junior prom. If the group opted to go, his teacher and two aides would attend and chaperone them at the event. I talked to some of the other parents and it seemed everyone wanted to give it a try. Of course, Coleman had no idea what a prom was, but thanks to my niece’s wedding a couple of years ago (at which Coleman had the greatest time), he did know what a wedding was, so I told him he was going to a prom wedding. He only needed to hear the word ‘wedding’ to get amped up about it.

I originally planned to just send him in a pair of black knit pants and a t-shirt.  I thought about those t-shirts that have a picture of a tux screen printed on the front, and started to search one out.  But during this time in 2022 Coleman was in such a good place mentally thanks to the Prednisone and Remicade, that I decided to float the idea of an actual tux. 

We talked about if for a few days, I showed him some photos, and then we just went for it.  I made an appointment at a local tux place for the following weekend to try some on and much to my continued surprise, he was flexible and patient while he tried them on.  It took a few tries because of his small size, but we finally found one that worked (with alterations), paid the fee, and off we went. 

On the night before the prom, we hung the tux up in the playroom where Coleman could see it and we talked about what the prom would be like.  The following day, when it was time to get dressed, he put everything on, including the vest, suitcoat, and even the shoes.  He only pushed back on the top button of the shirt.  I was stunned and I’ll say it was quite a moment when he walked into the kitchen all dressed up for our family and guests. 

The night was a smashing success, easily exceeding even our most optimistic expectations.  We dropped him off and expected to him last an hour or two at most, but the teachers didn’t ring us with the pick-up call until nearly 11 pm.  He had a great time dancing and eating with not only his classmates, but the entire junior class of the high school.  It was an unexpected, truly amazing evening for him, and we are so very grateful that Coleman is in a community where inclusion for all kids is a priority.  Everyone deserves to go to a prom wedding. 😊

 

The Way Things Hit

 

Shortly after track ended we joined Special Olympics softball with many of the same kids. Coleman loved this too, but it was a much greater challenge for him in all ways. He could barely hold up the bat, much less swing it, and he didn’t understand the concept of running bases. He was a danger in the outfield as he was far more interested in watching the kids playing basketball behind the softball field than he was watching for fly balls to come his way. When it was his turn to bat, Coach Vinnie (who is also the track coach and an amazing guy) walked him to the plate, picked the bat up and gently wrapped his arms around Coleman, helping him to hold the bat. Much to my great surprise and relief, Coleman didn’t push him or grab him or yell or anything. Vinnie helped him to swing (many times before they hit the ball!) and then helped him to run to first base. Forget that Coleman walked away after that, and that he had pretty much no interest in continuing to stay on base or better yet, running to another one. He participated though, and enjoyed being at the field among other kids.

There was something about that first practice though that hit me differently. 

First, it was all of the folks sitting, watching the game from their fold-up chairs.  They appeared to be older and I assumed they might be grandparents or neighbors coming to catch the game.  But as I scanned the field, I noticed the ages of the players.  There were many kids around Coleman’s age, but also many that were much, much older.  I glanced back to the folks in the fold-up chairs and realized they were parents. 

As the practice went on, it was clear the team was surprisingly good at the game. They could hit the ball strongly, understood when to run, and when to stay on base.  They were able to catch the ball most of the time, and many of them had incredible throwing ability.  They also seemed able to grasp when to encourage each other, saying things like “Great catch, Matt!” or “Nice try, Michaell!”.  But as I scanned back to Coleman, I saw him with his back to Homeplate, facing the basketball courts in the opposite park, scripting words to himself, oblivious to what was going on around him.  I walked out to where he stood and gently turned him toward home plate, saying “See them hitting the ball?  You have to watch for the ball and try to catch it.”  I tried to adjust the glove that was hanging loosely from his fingertips, but as soon as I pushed his fingers in, he pulled them back out. 

Around center base was a sweet, talkative female player.  She kept asking Coleman questions, like “Hey Coleman, what’s your favorite t.v. show?” “What grade are you in?” “What is your favorite dessert?" "Do you have any siblings, Coleman?” He didn’t respond to any of the questions though and kept looking at the sky or turning back toward the basketball game.   She kept asking questions until I finally said “He’s not feeling very talkative today.”  The issue, though, is that he really isn’t able to answer most of those questions, not understanding words like favorite, sibling, or probably even dessert, and he definitely doesn’t know what grade he is in.  (In his defense, I just figured it out last year.)  Overall, though, he generally doesn’t have the language skills or conversational abilities to engage like this sweet girl wanted.   

Later that night I was thinking back on the practice.  I tried not to let myself go there, but sure enough I slipped down the rabbit hole and had myself a nice little pity party as I thought about the aging parents, the older kids, Coleman growing old, Billy and I growing old, and about how different Coleman was from so many of these other players.  I decided right then and there that we wouldn’t go back to softball again and that made my little pity party a big pity party. 

It’s funny the way things just hit you sometimes.  Coleman had already been with some of these families during track.  But track was just running, and you only really need to follow everyone else on the path.  On that first softball practice, something just hit me wrong.  After a while, I pulled myself together.  I reminded myself that Coley is Coley, good at some things and not-so-good at other things, just like all of us.  I promised myself to make social conversation a priority goal on his upcoming IEP.  And I poured myself a nice big glass of wine.  Thankfully Billy sat with me and started in with completely inappropriate jokes about the three of us growing old and pretty soon we were both keeled over laughing.  Everyone needs a Billy in their life.

We did go back to softball after that, and we are planning to try again this year.  After all, Coleman might catch on.  You never know when things will hit just right.

 

 

A Posse of His Own #2

 

Some of you may remember our initial foray into track back in 2017.  The program was run through SNAP (Special Needs Athletic Partnership) in partnership with the South Shore Fireboltz and Coleman had an amazing experience.  One of the ‘coach’ volunteers at the time was his former Hingham teacher, and since this was shortly after Coleman left Hingham public schools, it was the first time he had seen her since leaving.  I wrote about that reunion previously, and the memories Coleman running with his old class brings me joy to this day. 

It also brings me sorrow, because Coleman had a really hard time when the program ended 6 weeks later.  I think he misunderstood what was happening and somewhere in his mind, I think he thought this was somehow the beginning of a return to Hingham, his friends, and Miss J.  We prepared him of course that it was only 5, then 4, then 3 etc weeks before it ended but he heard what he wanted to hear, and apparently the program ending was not something he wanted to hear. 

“Where’s track?”  he asked excitedly, the day after it ended. 

“It’s over, remember?” I responded.

“Where’s Miss J?” he asked without pause.

“Coley, track and Miss J are over.  We can see them next year.”

“Where are the kids?”, he asked again, not giving up.

This conversation went on for about two weeks, many, many times per day, until, sadly, one morning he stated flatly “Track is all gone.”    No amount of explaining helped.  He wanted nothing to do with conversation about track after that.  He didn’t want to look at photos from track, or videos from track, or even hear the word ‘track”.  It was terribly sad. 

We didn’t sign up again the following year.  Maybe that was foolish, but I didn’t think either of us could handle it.  The cruelty of giving him something he loved, only to take it away again six weeks later was just something that I couldn’t explain and he couldn’t understand.

Last spring, 5 years later, a teacher at Scituate mentioned Special Olympics Track.  Apparently, several kids from his class were going to do it.  I wondered if he would remember what track was and if he would want to try.  I sat with him one night the following week and said “Coley do you remember track in Hingham? Do you remember running at the high school with all the kids and Miss J.?”  He looked up quickly, and I knew he remembered.  Before he could respond I said “Some kids from school at going to go to track in Scituate?  It’s not with Miss J.  It will be different but fun.”  I named kids in his class, and told him that they would be there.  I watched him mentally process it, and when he walked away repeating “We’re going to track with the kids” I knew we were at least going to give it a try.   

Turns out, he loved it.  The track season for him was spectacular in every way.  It lasted for 3 months, twice weekly, and from day one, it was a hit.  It also happens to be where we experienced the single greatest social moment ever. 

We were running late one afternoon (shocking, I know) and when we arrived, the kids were about half-way around the track walking, doing their warm up lap.  I took Coleman’s water bottle from him and pointed across the field.  “See the kids over there?  Run across the grass and you can catch up to them.”  He walked at first and then started to move a little quicker in the direction of the group.  When he was about half way there, the kids on the track noticed him.  “Hey look its Coleman”, they yelled. “Coleman!” “Hey Coley!” Four of his friends from school came running across the field to meet him.  They were smiling and yelling, shooting up high fives, and hugging each other as they walked back to the track.  

This might seem overblown to you, but you just can’t even imagine how meaningful that moment was to both Coleman and I.  I stood in complete awe, so thrilled for my boy that other kids noticed him, other peers were happy to see him.  For the first time in his life, he had friends.  For Coleman, his gleeful, smiling face and twirling fingers said it all. Immeasurable happiness.  He finally had a posse of his own. 

 

Breakthrough 17 Years In The Making

 

I’m going to come out of the gate this year with our biggest accomplishment.  That way, if I drop the ball the rest of the month, you’ll have heard the best we’ve got.  😊

Last night, we went to Burtons and Coleman ate a meal from the menu. 

That’s it, folks.  Mic drop. 

17 years in the making:  6 years with a feeding tube, and 11 years since it was removed.   17 long years of eating the exact same thing everyday.  17 long years of feeding work:  trying and failing, starting and stopping, winning and losing.  And in one miraculous year, everything changed. 

The change was fairly sudden.  He literally went from tolerating taking bites of food that he was offered (and not enjoying it, i.e. the cookie videos from last year) to devouring an entire portion of something that was offered to him at school.  We followed up at home with the same foods he tried at school and he did the same thing for us - ate it all without prompting.   Then one night, Billy and I were eating pizza.  (Hard to believe, I know.)  Coleman had already had his dinner, and came over and stood, staring at us and the pizza.  Billy and I looked at each other surprised, and I mouthed “Do you think he wants some?!”  Billy nodded, so I took a slice and said to Coleman “It's pizza. Do you want to try some?” We were stunned when he said yes, and even more stunned when he took the slice and gobbled the entire thing up in moments.  It’s been game on since then, and between school, his home team, and us, Coleman has been offered all kinds of new options.  It's been an absolute thrill to watch him learning to eat again and to find joy in so many new foods.  Bagels with cream cheese (that texture!!!! ), hamburgers, grilled cheese with sliced baby tomatoes, chicken Caesar salad wraps (with the dressing!), chicken tenders and tater tots (feels like such a teenager meal!).  It's been a really fantastic breakthrough.  Although, he still won't eat the warm chocolate chip cookie, so I'm pretty sure he's not my kid.

It's hard to put into perspective the enormity of this change.   It’s just so immense.  My sister stopped by one afternoon and as she walked in, stopped dead in her tracks. “Oh my God, is Coleman eating a bagel?!”  If you know Coleman, you know.  And while Coleman can’t verbalize for us how he feels, I can just imagine his relief, and how good it must be to taste something new.  We are so, so proud of him and excited to have so many new options for lunch, dinner and snacks.  Breakfast, unfortunately, is a no go.  He refuses to change up the morning routine.  He’s still all about the yo.  Again, if you know Coleman, you know.  😊

Year 10!!! :)

 

I suppose I should stop counting.  I mean, I’m lucky if I have the year right to begin with (in year six, my first post was titled “Welcome Back to Year 7”) and what difference does it make anyway?  Another day, another dollar.  Que sera, sera.  Same old, same old, am I right?   Hello, No, Bitches!  This is our 10^th Year!!  Forget that I hardly even earned the check mark last year with 4 lousy posts.  Irrelevant, I say.  What’s important is that I’m here, and you’re here, and together we have made it to 10 years of this blog!  10 years of reading and writing, crying and laughing, damning and celebrating this chaotic life with autism.  My heart is full.  Thank you for coming back again. 

 

If You Give a Boy A Cookie

I had planned to do the entire month this year in videos...just to show you all how amazing Coleman really is and how hard he works every day.  But I'm not 20 and I don't know all the cool tiktok tricks on videos and editing. Instead, I am barely able to operate my phone camera and gaming up for me is using iMovie.  Still, I do want to share some things Coleman has been hard working at.  Like eating.  We are always trying to think of new things to try - but it's never a one and done.  The same food has to be worked on daily for weeks.  And you have to always keep that new food in the rotation or Coleman will forget he likes it and all of the work is lost.  Thank God for the home team of therapists who stick to trying new things way more than I do.  They are tireless I tell you.   And his school program includes cooking and making meals together so they are working on him there too.  He had his first bite of a bagel with cream cheese in school last week!  So now we've added that one to our agenda too.     

Since Coleman's entire list of foods that he eats consists of about 10 items, there are plenty of things we can work on.  You'll be happy to know that I'm really focusing on nutritious and healthy options for my boy.  The video linked below highlights the work we've been doing over the last several weeks getting Coleman to eat a chocolate chip cookie.  That's right.  And you would think it would be a lot easier because really, what's not to love about a chocolate chip cookie?  But for Coleman, it's work.  Every day, try and try again.  Still, we are way ahead of where we have been in the past, and with every effort and every tiny taste, we make progress.  So I know we'll get there.  And not just with a cookie.  

To Just Let Things Be

 

I’m mostly happy with where we are at with Coleman.  He is really happy these days, and I’m so grateful for that.  But it’s more than that.  For so many years, we were trying to change things, trying to make things better for him.  Change Coleman’s behavior.  Change Coleman’s tics.  Change Coleman’s learning.  Change Coleman’s medicines.  Change Coleman’s supplements.  Change Coleman’s autism.   It’s a heavy burden to be striving for change all the time, especially when the change you seek is not to be found.  It’s a relief, honestly, to be where we are today;  to accept what is and believe everything is as it should be.  Life is much easier when we can just let things be.       

But from time to time I second guess myself.  Like when I come across articles as I did tonight.  “Autism-like Social Deficits Reversed by Epigenetic Drug”.  I stop scrolling on my laptop and stare.  A part of my brain wills me to go past it, to not read it.  But I have already clicked the link and am reading the article.  The content is well above my pay grade:

“A chromatin-loosening drug already approved as a cancer therapeutic may have another application—reversing the social deficits associated with autism spectrum disorder (ASD). If chromatin is packed too tightly, it can entomb genes, preventing their expression by closing them off from the cell's transcriptional machinery….   According to these scientists, brief treatment with a very low dose … restored social deficits in animal models of autism in a sustained fashion.”

I understand just enough to be dangerous.  Epigenetics is science focused on the expression of genes, and the ability to turn on or off genes rather than altering the DNA itself.  Several years ago I read a book by a physicist – her granddaughter was diagnosed with autism and she left her job to focus on evaluating and fixing his genes through epigenetics.  The story of course, is that she succeeded.  But more importantly, for years after that, she treated and helped hundreds of kids on the spectrum achieve similar results.  By the time I found her, she was no longer treating patients, but her prior years-long waitlist of parents desperate for help drove her to publish many free guides on epigenetics and how to test genes, how to interpret results and ways to alter various gene’s expressions.  It was challenging reading for me, but I felt sure that somewhere in it all was the cure I desperately wanted but could not find.

I think about that book again tonight after I read the article.  It’s been a few years since I read the book. I rifle through my bookshelf unsuccessfully to see if I can find it.  I consider for a minute looking the author up again.  Maybe I can plead with her to just look at Coleman’s data.   Maybe she can help.

I glance at Coleman from where I’m sitting.  He’s laughing out loud, watching The Bubble guppies on his computer.  I smile at him and he smiles his beautiful smile back at me.  I walk over to him, pull him close and whisper to him.  “You know I would do anything for you, right Buddy?” But he pushes me away like a typical teenager and points to his computer.  The characters are pretending they are race car drivers, and he and I repeat portions of the show back and forth, as if we too are race car drivers. He skips around the playroom happily. 

I go back to my laptop and stare at the article again.  After a few minutes, I close the article and close the computer.     

It's really hard sometimes to just let things be.  And not because Coleman isn’t just awesome as he is.  He is awesome.  Really awesome.  But sometimes letting things be feels a lot like giving up.  And I never want Coleman to think I gave up.  Especially since I never even found what we were searching for.  I wish so much that I could have found the secret that would have changed everything for my boy. 

But here we are.  I am desperate for a forgiveness from Coleman that I know I can never get.  A forgiveness for trying and failing so many times.  A forgiveness for being unable to change his story.  Lord it is a heavy.  But I am working on myself.  Working on knowing that giving up on change is not the same as giving up on Coleman.  Working on self forgiveness.  Working on extending us both the grace to accept each other as we are – with both strengths and weaknesses but above all with love.  Loads and loads of love.  That’s something we both can just let be.   

Happy Coley

 

So I really want to update but work is a total time suck right now...so in the meantime please enjoy this video of my boy being happy :)

Year 8

I consider myself very superstitious.  Like knocking on wood, not walking under ladders, bad things happen in three’s…all of it.  I nearly broke a knee once trying to catch a mirror that I accidentally knocked off a shelf.  Escaping seven years of bad luck would’ve been worth the broken knee.  For that reason, it’s with trepidation that I write the blog this year.  So lean in here for a second.  I’m going to whisper something very quietly.  Things are good.  Really good.  Maybe even great.  Coleman is very happy.   

Ok now go knock on every single piece of wood you find, please! 

Thank you for visiting again this year.  I hope you are all good too.

Janet

Thank You For Visiting

 

Well, here we are, last day of the month and I’m afraid I fell woefully short this year.  There is, for me, such joy in sharing our stories with all of you.  But I simply did not have the available time to do this blog justice this year.  Know that Coleman had plenty of challenges, but plenty of accomplishments too. 

Alongside the health issues, Coleman had to let another sibling leave for college.  Emma left in mid-August, and in the weeks leading up to her departure, he talked a lot about her leaving and we reminded him how Abby left and then came home, and that the same thing would happen with Emma.  But having them both gone was hard on him (Abby took a gap year but took a job in Vail for the season) and he asked for months when they would be home or when he would see them again until finally we decided to take him to visit Emma in Vermont.  He was super excited to go but as we strolled a beautiful farm there upon arrival, he was quiet and withdrawn.  He barely said anything for the entire weekend that we were there, and on the way home just said flatly “Emma is not coming home today.”  We had prepared him, of course, and I guess maybe he knew it, but I think perhaps leaving her again weighed on him so much that it darkened his mood the entire time we were there.  

Gus, the puppy we got for Coleman, has been little consolation in the girls’ absence.  Grown into a much larger dog now, Gus is a joy for everyone but Coleman.  He cares just enough to want to know exactly where Gus is at all times, but not enough to pet him or talk to him.  If Gus leaves the room, Coleman will ask where he went.  If Gus goes out for a walk, Coleman wants to go.  If he goes upstairs, Coleman wants him to come back down.  When he goes up to bed, he insists Gus come upstairs as well.  But ask Coleman to pet him or talk to him?  That’s a hard no.  In reality, Coleman’s relationship with Gus is an accurate metaphor for his relationship with pretty much most people:  I want to be near you but I don’t really want to talk to you. 

Coleman continues to work hard at mastering daily living skills, with the good help of school and our wonderful in-home services team.  He’s done an amazing job at learning to shower on his own and I can envision now (when I never could before) that he will actually get there and have independence in this area.  He is working on exercise too, and Covid gave him both the time and space to work on a ‘gym’ routine, including treadmill, spin bike, weights, and yoga.  Again, his home team put together an independent schedule with pictures that takes him through each of these activities. The objective is that eventually he will be able to come home from school, pick up the activity schedule and bang through each of the workouts independently.  I know what you’re thinking and I’m there with you:  now would be a good time to ask his team for my own workout activity schedule.  J

Coleman is back at school full time now, in the new program in Scituate that he loved so much last year.  I love the program too, where the teachers and aides focus on a much bigger picture than simply academics.  Coleman goes for walks, spends time helping in a garden, takes classes learning to use a microwave, or how to make breakfast – lots of different things.  To me, though, the thing I love best is that they allow Coleman to get up and walk around the classroom if he wants.  This is important because I think for Coleman, pacing is a coping mechanism.  He does it at home a lot, especially when feeling heightened emotion - excited, nervous or sad - and that his teacher recognizes this means so much to me.  They are a loving team, concerned about Coleman as a whole person, and making the change to attend this program was one of the best decisions we have made.   

Overall, yes we had some rough patches this year, but in many more ways it was good. Coleman is learning to adjust to new demands and new expectations.  He is learning to be flexible in the face of new challenges, and learning to accept that what is new may not be easy but is survivable.  And he’s learning that every single day we are given another chance to try again.  We’re enormously proud of him and the beautiful boy that he is.  

Thank you for visiting, you can never have too many super duper super swell friends. :)

Birds Nest Catching.

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