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.