My dad passed away when he was 58, a year younger than I am today. It was pretty hard on my grandfather, who had lost his wife, my grandmother, eight months before losing his son. No parent wants to endure the death of their child, except….

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“That rep doesn’t count!” the race referee barked at me. “Your ruck has to hit this pad when you do the sit up. 20 reps” She was right. And I was struggling. I wasn’t properly prepared for the Spartan DEKA race and it was not working out the way I expected. (Kind of like parenting a special needs child, come to think of it). I thought of stopping. But Dan Toffling, another special needs dad and good friend of mine, had blown out of the station and was pulling away.

He and I signed up together for something that neither of us really looked forward to. A Spartan DEKA race and for some reason decided to do it with a 35lb ruck on our backs.

It was most certainly what my older daughter calls “Type 2 fun” as in, miserable during, but good story after.

After the twenty sit ups, my chest was heaving and I was not sure it was even going to be Type 2 fun…. But I had an STX BP1 Team Lily shirt on to remind me why I’m doing these things.

Five kilometers and ten stations of various torturous tasks later, we had each finished. The picture below is of the last station - burpees - which I despise.

On the way home, we had a few laughs about the unexpecteds of parenting a child with disabilities. I mentioned that Lily had ordered a meal, finally, on an app, only to have it delivered to a Panera in central Connecticut, not Boston. Dan told me of how his daughter had had $300 of sweet potato fries grubhubbed to his house. Fellow travelers.

A couple of weeks before, we had had dinner with another couple whose daughter, Mary is much the same profile as Lily, unlikely to ever be able to be fully independent. The mom was content putting off the move to independent living indefinitely, namely forever. The dad, a doctor, said, “sure, except if you look at an actuarial table, the odds of us dying before Mary does are fairly high. Like really high. What’s going to happen to her after we are gone?”

He had distilled in one sentence a recurring nightmare of special needs parents.

One of the most devastating memes that I have seen on the special needs circles is a mom who posted the meme below.

My grandfather’s nightmare was the dream for which many special needs parents wished. For most of us, there is not a day that goes by when we don’t worry about it.

If you want to understand why, watch just the trailer to the film “Unseen” about caregivers of people with severe disabilities. The same filmmakers are working on one called “Uncertain” about housing needs of adults with significant disabilities. These problems plague us.

My actuarial table looks something like this. At age 59, I’m now a year older than my dad was when he died. My mom passed away last year at the age of 90. If things work out that way, Lily will be 52 when I’m 90. There are no known comorbidities with her version of STX BP1.

That could leave her almost forty years without me.

And, compared to most parents of kids with special needs, I have it easy. Over the past three years, I’ve begun to picture Lily being moderately independent. I dream of the day when Waymo comes to Boston for transportation. Who knows where she’ll be in twenty years.

For many other parents, no matter how hard they dream, there is no vision of that level of independence. Instead, their dream is my grandfather’s nightmare because the burden is so severe and they cannot picture anyone else shouldering it the way they do.

Instead, when I pass away, I’ll pass the baton to Lily’s older sister Ella.

In the meantime, I need more Type 2 fun. I need more Spartan Races. Dan, and his wife Mercedes, and I signed up for another together. We’re all in the same boat, trying to beat the odds of our respective actuarial tables.

See you on November 7th at Fenway Park. If you are in Boston, come join the team: Lily Kahrl - Inclusion Warriors for some great Type 2 fun.

I knew that there was no way to get it all squeezed in before school drop off.

There’s not a parent in this country who hasn’t experienced this.

Except this time it was for a good reason. It was going to be a special day and a special ride to school. Lily knew this because there was a U Haul truck in our driveway. Ridin’ the truck to school.

This summer as part of her internship at BINA Farm where she does therapeutic riding, Lily has been working with Chasidy Jacquith in the agricultural center. We’ve been building raised beds for growing seedlings and vegetables.

The previous Friday, I’d been working with Lily measuring and cutting the lumber for the beds. A friend helped me set up the miter saw. I’d worked as a carpenter during college, so we dove in. Measuring and cutting. The sun was shining. Lily was having fun. And she and I both managed to emerge with all ten fingers. Carefully unplugging the saw before she was even within ten feet of it might have helped with that.

(If you look closely, the shadow of the saw conceals the end of the unplugged cord lying on the table.)

Chasidy swung by and shared the plans for the entire center with us and it was clear that we didn’t have enough of the pallets or enough potting soil.

I called up Green’s Hardware. Jerry answered the phone. I’ve been going to Green’s for at least a decade.

“Hey, this is Ben Kahrl. I wanted to find out if you had any spare moving pallets.”

Silence.

“I’m Lily’s dad.”

“Ooooh,” he said warmly, “I know who you are. Sure, we have plenty.”

It was about the umteen zillionth time I was better known by being Lily’s dad than my own name. It’s like nepotism in reverse.

We pulled in around 7:30 the following Wednesday and Jerry and Tim helped Lily load up the pallets and soil. Like the unplugged miter saw, the key to the forklift was securely in Tim’s pocket before Lily climbed in.

Two doors down from Green’s was Maugus, a cafe that’s been in our town for over sixty years, but recently has had a facelift and new management, who is, to our good fortune, Latino. It was going to give us a chance to practice our ever nascent Spanish.

Lily sat down and Angel (ahn-hel) came over. He was a little quiet until Lily and I started to try to speak in Spanish.

“Como estas? Muy Bien.” Lily said, asking and answering her own question.

“Huevo con Queso” I added …. “Dos”…. she said, holding up two fingers.

It was pretty basic, but Angel’s face brightened. Lily’s did too, not altogether surprisingly when she was getting attention from an attractive young man.

His sister Fernanda came over and gave us some leche chocolatada and then arrived later with la cuenta.

As we were leaving, Lily gave Fernanda a big hug.

Twenty bags of soil and some moving pallets. A few words in Spanish.

And Lily continued to connect.

We jammed to Taylor Swift in the big truck. Lily loved riding shotgun.

We were twenty minutes late to school but I figured being tardy today was worth it.

“Who is Barry Glickman????”

My older daughter, Ella, had called me as she and Lily drove up to Maine. Lily was trying to find the right music on Ella’s phone and was asking for the “Barry Glickman” song.

Ella had been away traveling for a couple of weeks and, in missing seeing Lily in the Weston Drama Workshop production of “The Prom”, didn’t realize that Taylor Swift had been displaced, not, mind you, in terms of wardrobe, but most certainly in listening preference.

“The Prom” tells the story of a high school girl in Indiana who wants an LGBTQ+ inclusive prom. It’s a bit of a spoof of the cultural clash between liberal, slightly narcissistic, theater characters and rigid midwestern conservatives resisting this inclusion. Much to Lily’s delight, the part of Barry Glickman was played by Oscar Allen, a friend (and slight crush) of Lily’s from high school. Lily and Oscar had been in three different musicals together in high school, so they knew each other well.

It was now songs like “Barry Glickman’s going to The Prom!” “Love Thy Neighbor” and “The Acceptance Song” that were Lily’s chosen playlist. While I was yearning for a catalogue more the length of Taylor Swift in favor of a catalogue that was “only” nineteen songs long and had been drilled into my head daily in the car, that Lily was choosing Barry Glickman over Taylor Swift showed the depth of the success of the experience for Lily.

It also showed the depth of the commitment of the entire cast, crew, directors, and choreographer to make it work for Lily.

Even after her great audition experience (See “Her Wits and Her Words” blog) I was wondering how it would work. Practices, night after night, were three to four hours. Ella joked with me after seeing the schedule and said she would have a hard time with four hour theater practices.

This was a highly professional operation that has been around for more than sixty years. Many graduates went on to careers in theater themselves.

I had arranged to be outside of practices or to have another care partner there, waiting, but it became clear after a few days that that was entirely unnecessary. Night after night, when I picked Lily up, after a full day of school and then three plus hours of practice she looked ecstatic.

And it soon became clear why.

Theater kids.

And surrounded by love.

In a musical about having inclusion at school dances, the cast was deeply inclusive in both dramatic and subtle ways.

They all wore their STX BP1 “Team Lily” shirts one day to practice and she was surrounded. (literally, you can see her right in the middle beaming away)

Here she is with five of the stars. Oscar is in the brown sweatshirt directly behind her. Then at practice on stage with her Science is Love Team Lily shirts.

And, on a daily basis, her language skills improved because the cast quickly learned how to help and include Lily. They talked with and around her at their speed, but listened at hers. She picked up all sorts of things working hard to track peers whom she loved being around. And as she worked to express her thoughts, and her processing challenges appeared full force, they would slow down, listen, and respond more slowly, and listen more. Daily practices were like hours long speech therapy and it showed. Dramatically.

Chris Brindley, the director, always seemed an island of calm amidst a sea of dramatic energy. Julia Deter, the choreographer, continually subtly adjusted the choreography with Lily and those supporting her so it worked. Katrina Barrett, behind the scenes organizer extraordinaire, helped me make sure I had the right costumes lined up.

As opening night approached, and the practices grew more intense, Lily needed reinforcements. We made sure someone was there to support her. Julia reduced the complexity of her parts. Chris trimmed her scenes because costume changes at speed were just too stressful. We found a quiet space for her to re-regulate between her two scenes. (a yoga ball to bounce on and food did the trick)

Opening night. She made her opening in a cocktail scene and stood stock still like those around her. As the song began and a cute male chorus member swept up the stage, grabbed her hand, twirled around, and gave her a quick hug. And Lily began to dance with everyone else.

Julia, the choreographer, clearly knew what she was doing.

Exit stage right.

Then Lily and her care giver snuck up back into the rear of the audience and watched intently for two hours until the final scene with the song “It’s Time to Dance” approached. One of the students guided her onto the lower level of the stage and danced with her, another helped her navigate the steps up into the back. She danced in time (sort of), raised her hands, bowed, and was off.

All the students had learned how to adjust their timing, keep going even if she paused out of time, and guide her skillfully back into the scene. And then guide her for the final bow.

Five shows in all. In a show with a powerful message focused on inclusion relative to sexual orientation, the cast had demonstrated it on a daily basis around disability.

After one, Oscar Allen came out from backstage. Elaine Cheng and Stephanie Xia, friends from the swim team, had come to watch and brought Lily flowers. It all seemed so natural.

Because it was.

This blog is about being the dad of a daughter with a rare genetic disorder, STX BP1, and our adventures together. The blog is free, and any subscription donations go to the STX BP1 Foundation to help find a cure for her genetic disorder.

Connie, my partner, emailed me: “I would probably try magnetic and snap closure. Maybe start with a 40? Or see if u can get a measurement.” I couldn’t. I didn’t have a tailor’s measuring tape and Lily wasn’t in the mood to be measured anyway.

She was trying to help me with bras for Lily. I’m sure the word that came to Connie’s mind was “hopeless”. I would have been satisfied if that word had simply had been preceded by “almost”.

I would, for the time being, remain a foreigner in a foreign land.

Connie has been invaluable in a great many aspects with Lily. She’s not only obviously a woman and understands things I never will, she’s also an ob/gyn, which has also proved obviously informative when I was working to get an IUD for Lily (that’s for another blog on another day).

This day, it was about bras, one of the many areas of femalehood where I have felt like a foreigner in a foreign land. Connie had suggested a few makers of bras and a start to try to find some that would work for Lily.

Way back in my youth, namely high school and college, about the only discussions that most guys had around bras were often alcohol addled talks about the manual dexterity necessary to unclasp one left-handed in the dark. The four decades that have since passed left me bereft of anything useful besides random numbers between 30 and 40 and single or paired letters between A and G that mean less than nothing to me.

This was honestly a perpetual and wide-ranging issue for me when it came to female fashion in respect to Lily. I was a history major. I read endlessly about World War Two. I could offer long disquisitions about tanks in various theaters, while conversely I could number on one hand the total number of female clothing designers I know. Sizing? I’ve been the same size - shirts 16/34, pants 34/34 - for 30 years. T-shirt sizes - XL. that’s it. I can use those same two letters for socks, swim trunks, underwear, raincoats, patagonia vests, everything. I’ve literally had to memorize only two numbers and two letters for my entire wardrobe.

For women’s clothing, it’s different sizes for the same person in the different brands that I cannot even name. XL, L, 8, 20, 34A, 40DD… and sometimes it isn’t even the same size with the same designer if it is a different style or cut.

I first ran into this wall a couple of years ago when Lily and I went to Macy’s to get her a dress for a winter formal. I was smart enough to wave the white flag early, snag an older saleswoman, and asked her to help me select the right size and style. You can see from the picture trying on dresses was not Lily’s favorite activity.

But we succeeded. I went with the frozen Elsa style over the more conservative dark green option and it worked. We got her to the dance and she had a blast with her friends.

Unsurprising as it may seem, I never ventured to Macy’s again until I had to. A trip to Washington D.C. for Lily to accept the Congressional Award Bronze Medal and to visit Capitol Hill to lobby for rare disease funding was in the offing.

I wandered through the sections looking for a jacket that would fit. Is she an 18, 22? 40? 8? Why aren’t all the jackets in one section instead of clothing being organized around designers? I was lost.

I texted Ella, Lily’s older sister..

“Send me pictures” she replied. I did.

“Try this section and this size.”

She suggested a black jacket. I couldn’t resist the pink - a nod towards Elle of Legally Blond, as Lily had been in that musical two months before.

The lady at the counter smiled when she said, “It looks like you haven’t used your Macy’s card in a while.” uh… no… not since the last time I ventured into this foreign land with my daughter two years ago.

Two jackets later, I was ready to D.C.

She rocked the trip to the Capitol in both pink and black (with requisite Taylor Swift shirt underneath).

But back to the bras. I’m trying to find one that’s the right size, that is adaptive so that she can put it on herself. Not too tight, not too loose. Can’t be too strappy or she won’t find the right hole and it won’t get on. Not requiring too much flexibility. Not requiring too much manual dexterity.

Too many sizes. Too many styles. Too many options. fasten in the front. Magnets. Velcro. Snaps. No fastener. Over the head. It all makes my head hurt.

She’s almost able to dress herself. When I tell women who know Lily that the bra remains the bridge too far for her, they smile knowingly.

As far as women’s fashion goes, it remains a bridge too far for her dad as well.

“Does she have a one on one?” Chris asked.

Chris Brindley is one of the directors of the Weston Drama Workshop, a local community theater that puts on productions every summer. I was talking with him about Lily auditioning for a role. Lily has been in three productions in high school and her last director knew Chris and the other director and said I should help Lily give it a try.

A one on one aid….

The answer wasn’t as simple as one might think.

In the world of special education, parents often have to fight with perpetually underfunded school districts for the appropriate level of support. This support can range from the school providing an aid, occupational therapy, speech therapy, physical therapy, or even technical support like an augmentative or alternative communication device (an AAC). For many years, Lily actually received most of these things. Hours of therapy, staff support, and a communication device where she pressed buttons to make it say basic words so she could communicate.

For many years, Lily had no words, only signs for words like “more” or “please”. Then she learned to push a few buttons for different things she wanted. Eventually, around age 10, she started saying a few words, often in response to cueing questions. Then she began to mimic others’ speech. Friends would joke that when I talked with them on the phone in the car, I had a little parrot in the backseat as Lily would try to imitate their words. We were still doing a lot of interpreting and supporting her. One can see her here trying to sing Happy Birthday when she was 12. Even when she entered Wellesley High School for the first of two senior years, aids and teachers were still doing a lot of interpreting for her with neurotypical students.

“Well,” I replied to Chris, “that’s a complicated answer. I’m trying to gradually reduce the reliance on a one on one.” He knew what I was saying. As I had been, he is a high school teacher with decades of experience. It was going to be a balance of pulling away the support and making sure she had what she needed. However, if the proverbial bicycle crashed without the training wheels, Chris and his staff, not I, were going to be catching her falling.

I thought of teaching Ella, Lily’s older sister to ride a bike. We gradually help kids ride and then there comes a point where we unscrew the training wheels and let them fly. Every stage of life, we’re trying to balance risk, safety, autonomy, and the lessons failure will teach our kids. In today’s world, parents are often rightfully criticized for being overprotective, for keeping the proverbial training wheels on far too long. If you want overprotective parents, though, just watch parents of special needs kids, whose worries and fears are magnified ten-fold, particularly when their children cannot communicate their needs and wants.

Chris continued about the audition process.

“Every student has to sing a song. Sixteen bars. Any song they choose. Could be Happy Birthday. Could be a Taylor Swift tune. Any song works well.” He said they had had students in wheelchairs, blind students, and a couple who had Down Syndrome. It wasn’t his first rodeo, but I also knew he wouldn’t have met her before the audition day.

As the date drew near, I hadn’t gotten Lily enough practice. I’m not a thespian. My “stage” career consisted of three years working on set crew during high school. And the last time I had done anything musical in public was a second grade recorder recital. I was completely bereft of any of the necessary tools to help her.

We arrived at Weston Community Center. She had her fake microphone in hand. I had hoped that some of the forty or so students who were also auditioning would be from her high school and so she’d have a familiar face. But there were none. She didn’t know a soul. No aid. No assistive communication device. Not one familiar face. No parent.

Chris waved her in. Parents were understandably not allowed.

And I retreated back to the car. For what was supposed to be the next three hours.

I snuck back in and on the way to the restroom, peeked in to see Lily.

She was up front, smiling away, swaying to a jazz version of Happy Birthday. And not uttering a note. She finished and the students erupted in applause.

She’d never done this. Never been in a setting like this not knowing a soul.

I called Connie to tell her what I’d seen and she just replied, “Theater kids. They are great.”

After three hours, Lily emerged smiling as broadly as ever. No muss, no fuss, just happy. Mic in hand, we strode into the night and back to the car.

Chris emailed me a week later. “She’ll be in the production of The Prom.” he wrote.

I don’t know how this will work, but I do know that it will.

She kicked off her training wheels.

Left only with her wits and her words for the audition (and her trusty mic), she’d found lots of friends and again found a place.

A cold winter wind was whipping around the corner of the U.S. Capitol. This was the culmination of a two-year journey, and I had missed. It was colder than I had expected and I hadn’t packed right. Neither Lily nor I had a winter jacket. Despite having traveled with her several times, I had missed badly. .

I was hoping the security guard wouldn’t make us wait. And, doing his job, he did.

Lily and I were standing outside the U.S. Capitol about ten minutes before 9am. We were scheduled to meet Representative Katherine Clark around 9:30, but I wanted to be early. And we were. Too early.

Traveling with Lily is a bit of a challenge, because I have a hard time predicting exactly how long things will take. Sometimes, she’s in a good mood and getting dressed takes ten minutes. Other times, after several delays, it’s been forty-five minutes.

But here we were, finally, waiting outside in the cold for Rep. Clark’s aide to collect us and go inside to meet the Congresswoman.

It was a journey that had started two and a half years before, when I saw an article in a local newsletter about a Wellesley student getting the Congressional Award. I decided that Lily and I would do that together and so I signed her up for the program. Show the world, or at least our little corner of it, what STX BP1 kids could do. She would need to perform over 100 hours of community service, 50 hours of athletics, and 50 hours of personal development work.

We chose horse riding therapy for her personal development, track and swimming for the athletic work, but had to shop around a bit for the community service. I had to find something that she would both like and actually be able to do. We finally settled on the Allston Brighton Food Pantry and started spending most Wednesdays there. Every other month we delivered free menstrual supplies provided by Dignity Matters to a small non-profit organization in Boston, Women Connecting Affecting Change.

The community service was a heavier lift for both of us. She already was running Unified Track with the high school and riding with a local therapeutic barn, BINA Farm, but service was less familiar and more of an unknown for her.

I didn’t know what she could do. I didn’t know how they would react. But I knew that it would be good for her and for me to get out of our own skins, to focus on others.

But first we needed to go to BJ’s to get some food, load it up in the cart, ring it up, and then drive to the soup kitchen. Lily learned to push a cart and help ring things up. We were on the right path.

Once every couple of months, I’d pull her out of school, drive to pick up the bags of pads and then drive back into Boston where we hung out with the staff at Women Connecting Affecting Change. That was a win for everyone. We were working together, getting to know each other, and having fun along the way.

The food pantry though was a bit of a rougher start because I was farther back on the learning curve. I hovered next to Lily and wanted to make sure everything went well. It was just kind of suffocating for her and the rest of the staff wasn’t learning to help her.

And then the director, Chef Pam, intervened. We were talking and she said to me in a gruff voice, “You… you need to leave!”

Uh, I thought to myself, I thought I was doing something good, what happened?

She turned to Lily and said, “You, you can stay here with me, but dad, you can leave.” She was telling me to let Lily relate with the staff without me and everyone would figure it out.

And they did.

I came up about an hour later and found them all dancing to Taylor Swift among other tunes, and just hanging. Now it was Lily saying I needed to leave so she could hang out with her friends.

After two years of service, athletics, and self-development work, it had finally come time to head to the U.S. Capitol. Representative Clark’s staff had arranged a time. She had been in a musical “Legally Blond” the previous December, so I got a pink jacket for her at Macy’s to go with the ever-present Taylor Swift t-shirt and we slid into the side entrance to meet Representative Clark.

Lily had learned along the way. And so had I.

Lessons on letting go, lessons on enduring goals.

They will serve us well in the days and years ahead.

Here’s to pushing more boundaries and more opportunities to share Lily’s light with others.

Competing in an NCAA sanctioned track meet.

“She’s right over there,” Kelly said pointing to a group of athletes gathered around the shot-put circle.

I couldn’t see her. I scanned the group several times and finally picked her out. She was just standing amongst a group of her peers waiting her turn to put the shot.

Although Wellesley Public Schools could have provided an aide to be with Lily throughout the meet, Kelly and I had talked and decided she didn’t need one. We had come to the meet simply as spectators and not in the role of support personnel. For this meet, her “support personnel” would be her wits and her teammates.

When our kids are younger, the thought of losing one of them in a crowd can strike terror in a parent’s heart. That happened to me once briefly in a clothing store with my older daughter. It was literally about a minute. Our minds race to all sorts of irrational places. For me it was my daughter’s face on a milk carton, just after the dreaded “911” digits flashed in front of me. Ella strode calmly out of the restroom and I almost hyperventilated with relief.

But here, when I finally did pick Lily out, I laughed. I’ve never been so happy to not be able to pick out my own child. I was happy she’d gotten lost in the crowd.

She was doing the shot put. The NCAA official called her name. “Kahrl up!, Anderson on deck! Parker in the hole!” he called out.

Then, she stepped into the circle took the 4 kg ball, slid it under her chin, and pushed it forward a few feet, turned around, and stepped back out of the circle. The track official snapped the tape down onto the toe board and took a measurement. “2.14 meters” He then calmly called up the next athlete from another school, and the process repeated.

Lily glanced over at us, waved happily, and turned back to wait her turn again. She certainly didn’t need us.

About thirty minutes later, as I was standing near the long jump runway, this process repeated itself. Athletes from several schools – Framingham State University, Gordon College, Univ. of Mass. Boston, and Lasalle, among others were all lining up and getting their marks. Long jump athletes have to be precise about where they start their runs so they hit the launch pad correctly. Lily is a little less particular about this because her version involves less precision. She jogs down the runway with a slightly stiff-legged gait, stops at the end of the pit, swings her arms, and basically does what we used to call the standing broad jump back in 6^th grade gym class.

Athletes took turns lining up and taking their warmup run throughs. Various competitors were making sure Lily got her turns as well. The race official at the end of the runway held her hand once as she took her standing broad jump. She didn’t get an official mark because the take off board was several feet from the pit, a distance she couldn’t clear on her own. But no matter. Off to running.

Then it was time for the 100. Christie, one of the Regis athletes, took her across the track to the starting line just in time for the last heat of the women’s 100. Off it went. They finished. The official signaled to the men who were lining up for the first heat to pause. Lily lined up with a couple of Regis runners, one male, one female.

“Runners Take Your Mark!” all three got ready.

“Set” – they all momentarily held still in a standing set position.

And the gun went off.

As she ran down the track, spectators from Regis and several other schools cheered her on.

As she finished, Angela said, “hey, I think that was her personal best.”

She got her official time. And the meet went on.

With her events concluded, I slid up the hill to the Athletic Department and did work for about an hour and then came back to the meet. She’d been there for about four hours. Track meets are notoriously long. Again, it took me a while to find her. I looked out onto the infield and saw her just as she lay down to go to sleep. It had been a long day.

Although parents and spectators were technically not allowed on the in field, I slid across the track, asked if she was ready, “I’m tired. Been a long day” she said with a smile. We walked outside the track. I texted her coaches to say I had her, and home we went. Her wits and her teammates had made it a great day.

The day was an inflection point. Lily was participating in a long chaotic neurotypical event without an aid. The activity was specifically not centered on her. The people keeping track of her were not special needs professionals. It wasn’t central to their job. And it worked.

To survive and thrive in the neurotypical majority world, she would have to continue to do this. Others would have to learn too.

And it is my job to carve out ways that Lily and they will learn together. Here’s to more of them, changing the world.

“She won!” I texted my friend John Breault.

He’s a former student, a friend of Lily’s, and a Special Ed teacher at Dartmouth High School where I used to work. I had him for four different courses when I was a teacher, so we got to know each other well. He currently runs the Unified Track program at Dartmouth High School. He’s had a passion for special needs athletes, born from his own aunt who has Down Syndrome. I knew he would understand and appreciate the nature of the accomplishment.

Lily had set a record in her first track meet for Regis College running as a Team IMPACT athlete, but that’s not the whole story.

Two months ago, I sat down with Kiera Murray, the Regis College track coach. She, like Diana Matthews, the swim coach, was in with Lily being part of the team. This was going to be a little different though. Swim meets are more contained and were in some ways more familiar for Lily. She’d run Unified Track at Wellesley High School but that was all special needs athletes. Pretty much every athlete at the smaller meets did every event. We’d all do the 100. Then we’d all do the long jump. Then we’d all do the javelin. Finally, we all did the 4x100 relay with volunteers running alongside the Unified athletes. It was geared towards special needs.

The Regis College meets were something different. Kiera had not had a Team IMPACT athlete and neither had many of the other coaches from the other teams. She called up the Gordon College coach to see if it would work and received permission for Lily to participate. The Team IMPACT label overcomes some of the figurative hurdles that the NCAA places in front of athletes participating in events.

So, Lily boarded the bus at 7:30am with everyone else for a meet that promised to be long, and was only made longer by a typical Massachusetts “spring” day of a windy forty degrees that, with the humidity, chilled the bones.

I was listening to the Ben Lionel Scott tapes again about test days. “The only people who fear test days are those who can’t pass the f-ing test.”

I texted Ella, her sister. This was Lily’s test day. Many a freezing cold day I’d spent watching Ella play soccer or lacrosse. Now it was Lily’s turn to push through her test.

I got to Gordon around 8:45am to make sure Kiera and Mikayla, the graduate student assistant coach, had the support they needed and settled into a remote teaching lesson I had at 9:30. I teach communications at the University of Global Health Equity in Butaro Rwanda and was doing a professional development workshop for the Center for Nursing and Midwifery. Lily wasn’t scheduled to run until almost noon. Track meets last forever which I knew because in a previous life I had been a high school track coach. So I knew I had plenty of time. Or so I thought.

At 9:20, I got a slightly urgent message from Kiera.

“She’s getting nervous with all of this and says, ‘no track.’”

New coach, new setting, cold weather, lots of pre-meet organized chaos was having an effect and Lily wasn’t bought in.

“How much should I push for her to stay? She’s saying she wants to go home and isn’t going to track today and isn’t feeling like it.”

I replied that if she just hung out and was there and didn’t race, that was o.k. I was leaning hard into the winter swim meet lesson of it being a journey of learning and growth, not my vision of her zipping down the track with great form.

Kiera texted again, a little more urgently: “She’s crying :( is there anything I can do to help her usually? Anything you typically do?”

I said I’d come up after I canceled my meeting. I told folks at UGHE that I needed to reschedule. As I was walking up to the track I texted Kiera,

“And I’ll walk up there. The same thing happened at her first swim meet. It’s just a lot. And she’s learning. And it’s OK. And you are doing exactly the right thing “

Like all parents helping their children to learn and grow, I struggle with when to simply let her struggle and when to pull the plug. With special needs parents, it’s often more challenging because we are asking others to guide this growth in our child, but others often have little to no experience guiding kids like ours. And yet, we must ask, and support both our kids’ growth and their mentors’ growth.

I repeated in my head: “We cannot let our concern for others’ feelings outweigh our love for our own children’s growth.” as I walked up to the track to collect Lily.

Just before I arrived, Kiera texted again.

Brady, one of Lily’s male friends on the track team, had appeared after his warm-up and her mood had improved. I decided not to intervene and let things run their course.

Two hours of hanging with the team and several snacks later, it was Lily’s turn to race. The 100m (or so I thought). Christie one of the other Regis woman athletes took her to the starting line, rolled up her jacket, and helped Lily line up.

Runners take your mark!.... she waited….. “Set!” the starter yelled.

And the gun went off….

She sprinted down the track, stayed in her lane and . . . . after 80 meters got distracted, turned around, walked back a few meters, smiled at Kiera. . . who now was waving at her to turn back around and finish the race, which she did. (see the video)

First Regis athlete ever to compete in the 120m sprint and, hence, set a team and meet record.

It was a win for everyone involved.

On the drive home, my phone pinged again. It was Kiera.

“Hey, a bunch of the other coaches remarked how great it was that Lily was in the meet.” She texted.

A cold day, some stressful moments, a rescheduled workshop, and we’d scored a win for inclusion. More neurotypical folks had seen they could include. And Lily knew she could compete.

Here’s to more track meets. Here’s to more test days.

Here’s to more growth for everyone involved, especially Lily’s dad.

I was skeptical. Nathalie Molina Niño, a friend whom I had met through the world of reproductive healthcare, was encouraging me to attend an event called The Renaissance Weekend. It was an “event” that had been happening in various parts of the world for over forty years. People gathered to share their lives, their insights, their wisdom, and the synergy produced a fascinating experience for everyone involved. At least that’s what she told me.

“I don’t actually have much to say that is worth hearing” I responded. I’d seen a list of some previous participants. One of them is now currently orbiting the dark side of the moon.

Let’s see. Dark side of the moon astronaut. Suburban dad. You get the idea.

The Sesame Street rhyme, “One of these things is not like the other ones. One of these things just doesn’t belong,” played in my head. Nathalie tried to convince me otherwise, but I wasn’t having it.

That was two years ago.

And then I thought about Lily.

She’s literally one in a million. How many kids like her had ever been to something like this? My guess was zero.

The trick is that during the weekend, all attendees have to contribute. All of them, and some speaking spots were ten to fifteen minutes. As I thought about signing up, in the back of my mind, it was still one of these “how’s this going to work out?” moments.

That question is often accompanied by that sick feeling in my gut, and I replay a different tape in my head, Arnold Schwartznegger from the Ben Lionel Scott motivational podcast, in his thick Austrian accent. “You have to be comfortable being uncomfortable to grow.”

And I also heard Dr. Ingo Helbig in my head: “your daughter is very rare.” And the mantle of carrying the STX BP1 message lay on my shoulders.

And so, because of Lily, I finally listened to my friend Nathalie. I may not be an astronaut, but I’ll bet no one else there has a daughter with STX BP1.

Lily’s speaking spot was going to be in front of the entire conference and it was titled, “You would never have guessed.” We only had two minutes, thankfully, but how to use that?

We practiced for two weeks. We made our list together of things that people wouldn’t think a kid like her could do.

I started by describing her condition to the audience.

“STX BP1 is one of five epileptic encephalopathies. Often, STXers, as we call our kids, have seizures. Lily is part of the 10-15% who do not. Many have fine and gross motor skill deficits and cognitive delays. Lily has all of these. Hundreds and hundreds of hours of Occupational, Physical, and Speech therapy have enabled her to walk, even run, and almost dress herself independently, and speak full multiword sentences.”

And then we began with her list:

“you’d never guess that…”

“I speak Portuguese – Bom Dia!” she said quietly into the mic.

“You’d never guess that…”

“I speak Spanish - Como estas? Muy Bien” she said a little louder

“You’d never guess that…”

“I swam for my high school and swam in a college meet,” she said a little more confidently.

“You’d never guess that….”

“I completed a Spartan Race at Fenway Park”

“You’d never guess that…”

“I got to see Taylor Swift in Concert!” she said with a big smile.

The list went on and then our time was up.

You’d never guess that by the end of the conference, everyone at the Renaissance weekend would know what STX BP1 is and what kids with it can do.

If you know Lily, you would guess that most of them got a high five and of course all of them knew that she loved Taylor Swift. She only wears Taylor Swift t-shirts.

After we sat down, Sam Howell, another of the participants, came up and introduced himself. He works at the NASA Jet Propulsion Laboratory. He helps run the Europa Clipper that will help explore one of Jupiter’s moons, hence the name Europa Clipper. You can see him explain it here.

He was all smiles after Lily’s presentation and showed me a t-shirt from NASA’s Jet Propulsion Lab.

It has a stunning resemblance to a certain singer whom Lily loves.

And no, I never would have guessed that Lily would ever wear a t-shirt from NASA’s Europa Clipper The Jupi-tour. And now, Sam is a member of Team Lily.

He texted me a couple of weeks later after sending along a t-shirt for me.

The next time around, after we visit him in southern California, we’ll add to the list, “you’d never guess that Lily helped steer the Europa Clipper on its Jupi-tour.”

My phone pinged with a text from one of Lily’s friends. It was Brooke Loftus.

I had just finished yet another Individual Education Plan meeting with lots of Lily’s teachers where we hammer out goals for the year. Although for many years, and for many many parents throughout the special needs world, these meetings were rather fraught and painful, this one was not. Lily is twenty now. We had been working with Wellesley Public Schools for over twelve years and we were lucky to be in a place where it was truly collaborative. Many of her teachers and staff had been with Lily for over a decade. All of them had seen her in the high school for a remarkable two senior years.

It was late March. The fall swim season had ended in October. The previous Saturday I had returned from a swim workshop Lily had at the same venue where she had competed in the fall.

I was a bit melancholy. I missed swimming.

IEP’s can set therapeutic and educational goals for kids like Lily, but what they cannot do is craft the magic I had felt in the fall. Parents cannot write in “social acceptance” or “social embrace” something we yearn for our kids, but cannot engineer. An IEP cannot make that happen.

But at Wellesley High School, because of kids like Brooke and experiences like the swim team, Lily had gotten that elusive social embrace ten fold. Lily had had three years of high school swimming – bus rides, songs, team meals, seeing kids in the hallway, having lunch with them. I missed them.

Brooke had been Lily’s teammate for three years and a swim captain her final year.

Brooke had also volunteered to coach the Wellesley S.T.A.R.S. Special Olympics club and had seen Lily progress from a “swimmer” who generally floated back and forth across the pool two to three times chatting with her guide during the 45 minute session to a kid who swam the 100 (up and back twice) in a meet. She had seen Lily progress from not swimming a length (25 yards) by herself to a confident swimmer who did 16-18 lengths during an hour practice.

Being a S.T.A.R.S. coach gave her more experience with special needs swimmers, and thus she was a leader for the Wellesley High School team when Lily joined in the fall of 2023.

Brooke had gotten to know Lily better than most because of her own misfortune. Brooke’s own swimming career had been hamstrung by injury. Her junior year, she had had knee surgery and spent almost the entire season with crutches on the deck coaching, but not swimming. Lena Lohse, another student with special needs and friend of Lily’s joined the team that year. She too grew into a swimmer under Brooke’s watchful eye. She too went from not swimming a length by herself to an athlete who swam the 100 in competition.

Lily’s second year with swimming had been a season full of emotional flooding for Lily. Brooke had seen it often and had learned. She had learned what Lily needed was utter calmness amidst the noise and stimulation of loud, sometimes chaotic life on the pool deck.

One of my favorite moments with Brooke happened at one of Lily’s later meets. Lily’s event approached, but about a minute before she was supposed to get on the blocks, she started to flood emotionally. Brooke had been assisting her to get on the blocks.

I turned to watch from where I stood, timing the events.

Brooke sprung into action . . . by simply turning away from Lily and leaving her alone.

Just … calmly… ignored her.

She turned towards the scorers’ table, asked an irrelevant question, and waited. And knew.

A few seconds later, Lily turned back, asked for a high five, and Brooke extended her hand to help her mount the starting block. No drama. No nervous “what should I do now” panic. No loud encouragement. Just like it was normal. And it was.

Lily stepped up onto the blocks, waited, the horn went off and she happily jumped in for her race.

Brooke had also learned other lessons of which I was unaware, until the art show revealed them.

A week after her text, I picked up Lily from Regis College, where she was now with the Wellesley Public Schools Launch program and ventured back to the high school. As we walked through the doors and up the stairs, I had the same feeling of melancholy. Brooke’s class was the last group of friends Lily would have from her high school years. Those wonderful days were gone.

Special needs parents often worry about a lot of things with their kids. Lots of things. One of them is will their children ever have neurotypical friends and will those friendships be actually sincere rather than simply “charity” or out of pity. With Brooke, I needn’t worry.

Since the end of swim season, Lily had been talking on the phone with Brooke regularly for months. She and a few other teammates had been instrumental in teaching Lily how to converse. To move from an abrupt frustrated impulsive hang up, to a nice good-bye as Lily learned phone etiquette, to transfer from repeated discussions about imaginary meals stolen to interactive questions about the day, to true conversation. Sometimes the conversations were a few times a day and often they lasted fifteen to twenty minutes.

And so, April 1^st, we arrived at the art display and Lily found Brooke. She had made a flower, a Lily, from clay, crafted and glazed it. You can see Lily, Brooke, and her piece below.

Her artist statement speaks for itself.

The blade moved very slowly and very carefully across his chin. Dawn exhibited a noticeably different and higher level of care for her client at Roosters. Everything about the service happened more slowly, more calmly, and more quietly. The man in the chair didn’t smile or chatter, but looked steadily into the mirror as she finished shaving and slowly wiped the white cream from his face and neck. I learned later from Dawn that he was autistic and getting a haircut was a lot for him.

I had taken Lily to the men’s hair salon several times when I got my hair cut. She liked the place and it was a good opportunity for her to learn just to hang. The staff was great. They’d let her sit in a neighboring chair that was empty while I got my hair cut. Soon, she was getting her hair styled too. Mostly, it was just braiding or a very slight trim, but she had to sit quietly and learn.

Then we bumped into Dawn one morning at Dunkin’ Donuts. Lily’s pretty social and had turned and said hello without me even realizing what was going on. Dawn engaged right back immediately and a friendship was forged. She shared with me that her dream was to have a salon that catered to clients with special needs, specifically autism and that she was working at Roosters.

Soon, there was a Team Lily shirt sitting on Dawn’s shelf and Lily had become a regular in her chair. It was clear from her tattoos and her stories that she’d seen a lot in her life, and it showed in her particular empathy for others. Something Lily had approached with caution became an event she looked forward to. We stopped by to say hello and snag a tootsie pop from the jar out front. Roosters had become a place of love for Lily.

But soon, it was to become something more.

One of the great challenges of parents of special needs kids is finding employment or at least meaningful volunteer work. It is a combination of finding something of appropriate challenge, teaching kids to work, and finding a place that will be a positive safe space for them.

For a person like Lily, honestly, I couldn’t even wrap my head around this idea as recently as a couple of years ago. We were still working on basic self-care and safe navigation. When I dropped her off at school, I had to make eye contact with the aid who was receiving her so she got to class safely. A job? It honestly hadn’t been on the mental horizon.

But steadily over the past two years, Lily progressed farther down what Dr. Ingo Helbig called the road to autonomy. I’d drop her off at school and she’d navigate down the hallways to her classroom.

We spent time at the Allston Brighton Food Pantry. She learned to stand and hand out meals, greet people, smile and laugh, and do that for an hour or two. She loved the crew at the pantry and they loved her. I could fade into the background and retreat into the basement away from her so she was on her own. But work? I wasn’t there…yet.

One day, as I sat in Dawn’s chair, I was telling her about Lily’s next step and trying to find places that would teach her about volunteering at the food pantry.

“Why doesn’t she try working here?” she asked.

“um…”

“She could greet people. I’ll show her how to fold towels and sweep. Lily’s awesome.”

I remembered her swim coach and her friends who dreamed things for her that I couldn’t see. Dawn was doing the same thing.

Dawn connected me with Carl, the manager, who was all in right away.

And so it began. I got some barber towels online. Now her OT helps her learn how to fold towels in the special way Dawn showed me. Her job coach is helping her learn that feedback and correction isn’t criticism, it’s help. A friend of mine embroidered the Roosters logo on a couple of shirts. The folks at Roosters helped design a whole curriculum for her you can see below.

And low and behold, Lily’s first day of work at Roosters. She’s learning. She’s growing. As I learn to let others dream and help her grow.

This is a dad blog about Lily, a kid with STX BP1, a rare genetic disorder, and her journeys in a neurotypical world. To receive new posts, consider becoming a free or paid subscriber. All payments go directly to the STX BP1 Foundation.

“You must learn how to breathe” Alex said to me with a slight Brazilian accent.

I have to admit I had been thinking the same sort of thing, but was having a hard time. Physically, he was slightly softer than granite and had been lying directly on my chest, so breathing wasn’t coming all that easily.

Lily and I have been working on the same technique. Breathe.

Hers comes during emotional flooding. Mine? Mine was during jiu jitsu class.

Alex is one of the better known, liked, and respected jiu jitsu instructors in my area. A fourth degree black belt who wins tournaments and has a big grin.

I took up jiu jitsu at the behest of my friend Ben Dunay, a former student and current brown belt. He’s been training for eight years. He’d been suggesting it for a couple of years and I finally stopped resisting. I needed it in my life for two reasons. First, I need more ways to make myself uncomfortable because that, for me, is where growth comes. Second, I wanted to stay mentally as sharp as possible.

The number one fear among special needs parents is what will happen with their children when they are gone. It is a fear that pervades much of our lives. Who will manage their care when we die? And so, amongst other pursuits in my life, my “why” for jiu jitsu is to stay as healthy, both mentally and physically as possible for as long as I can so that I am around as long as I can be for Lily. (To dive deeper in this, one can watch “Unseen” about the struggles of caregivers of intellectually disabled children and adults and “Uncertain” about the struggle for supportive housing.)

I joined two gyms, one, Soneca BJJ, where Ben trains, and one, Gracie Barra Newton, where I can train more often. The training was working. I was sore, awkward, inept, and learning. And, I was learning to calm myself under pressure. More than a few times, Ben put me in a chokehold that wasn’t quite set to show me the high level of discomfort I could endure and deal with without blacking out.

Breathing, I have found, is a common theme. Leif Babin, one of the Navy SEAL authors of Extreme Ownership, spoke about it in one of the courses from Echelon Front called “How to Control Your Emotions”. He described combat in Iraq and said that whenever he needed to be calm, he’d pause, take a couple of breaths, and work to detach so he could be more rational under pressure.

After a couple of months of lessons, one Friday night for open roll at Soneca Brazilian jiu jitsu in Marlborough I had Lily and decided to take her. The plan was to have her sit with Ben’s daughter, hang and watch a movie on her ipad while I got tortured on the mat. I am neither skilled nor very strong.

At the end of the hour, she stood up as I was packing up my gi (jiu jitsu wear) and said, “Daddy, I want to learn to fight.” I have to admit, I didn’t really believe her.

Three days later, at the Gracie Barra gym, Connie, my partner, brought her to watch. Lily stayed for the entire hour and chose observing over Panera. She repeated her same desire of wanting to learn how to fight.

I was surprised.

Almost as surprising though was the reaction of the instructors at both gyms, Soneca BJJ in Marlborough and Gracie Barra in Newton. They didn’t ask about her disability. They didn’t ask about accommodations. They just simply said yes, we’ll make it work. Welcome. It’s an honor.

And so, we began with Lily. She is a die-hard Taylor Swift fan so I had to make a slight adjustment to her gis….

We started at the local gym, but she was hesitant and just wanted to watch. Alex arrived for the lesson and she blurted, “Bom Dia!” which she had learned with the Brazilian crew at our local Dunkin’ Donuts. Alex smiled and started the lesson.

Lily and Alex after the lesson

At first, it was a lot and Lily said she needed a minute before she got into her gi. I just said, “take a breath, take a minute” and I sat with her and we watched.

Lily slowly changed and watched. Professor Rodrigo encouraged her, “Come train with me.”

She took another minute, took a breath, and got on the mat with me. Alan, another instructor, helped her do a couple of warm ups and then she decided she was just going to watch. Alex wasn’t having it.

“Come learn Portuguese,” he smiled, and matched each drill with a new word for her. He instructed her while matching me with someone else. I had to let go, focus on my own learning, and let it happen. Here we were, a fourth degree black belt, rolling with my STX BP1 daughter. And wow was she loving it.

“Bonita!” Alan said as she rotated around him.

Another instructor joined in.

“Lily, when you do it well, say, ‘Lindo’ like The Beautiful Game.”

At the end of the lesson, we sat down in a circle and Alex talked about how important it was not to take jiu jitsu just to be able to be good at combat, but to apply it to other areas of one’s life. Breathe. Be calm. Relax.

The instructors and other students at Gracie Barra in Newton

The following week, Alyssa brought Lily to Soneca out in Marlborough. She was so excited that she bounded right onto the mat in her shoes (oops) to give Ben and me high fives.

Into the gi and a warm up and bingo, Jeff, one of the two instructors was helping her learn how to get side control on me and then top control on Ben.

Lily during the lesson with me, and then with Jeff, one of the instructors at Soneca BJJ in Marlborough Mass.

While I was grappling with another student, she went over with Jeff and rolled with a couple of the women in class. Lindsay, the female instructor, helped her out.

As Ben and I drove home, I marveled at how it had all happened. Ben wasn’t surprised. Here was a kid who struggled in lots of areas of life rolling doing a martial art

Ben paused for a moment.

“Hey, you know Lindsay’s women rolling tournament?” Yep. Lindsay had organized a women’s roll to benefit Abby’s House, a women’s shelter in Worcester.

“We should get Lily in that next year. Lots of people watching and cheering. Just what Lily would love.”

When Doug Curtin, the Wellesley High swim coach dreamed dreams for Lily, I was hesitant and couldn’t see it. This time around, I knew better. I learned not to be skeptical, but instead let others dream for me, and dream for Lily and lead the way.

Yep, let’s do it. We might have to get a gi with STX BP1 on it and show the world what STXers can do.

“So, Lily is quite rare…” Dr. Helbig said with a smile.

“Um, I thought that was already pretty clear” I was thinking to myself. She is one of roughly 300 people in the U.S. who have STX BP1 and roughly 1400 so far have been diagnosed around the world. It’s so rare it’s almost ultra rare.

Dr. Ingo Helbig is one of the leading experts on STX BP1. Originally from Germany, he continues to have a strong accent which I love, having studied German myself for several years. For me, it is the sound of scientific precision. Despite operating in what is his second language, he is able to bridge for me the distance between complex genetic science, his world, and parental layman’s ideas, namely my world.

We were down in Philadelphia for our semi-annual visit to the Children’s Hospital of Philadelphia ENDD (Epilepsy NeuroDevelopmental Disorders) clinic.

One of the aspects of having a rare disease like STX BP1 is a ton of testing - prodding, poking, measuring, measuring again, drawing more blood and other samples…. Every six months. STX parents make this semi-annual pilgrimage to one of our clinic sites to help in the search for a cure.

We enroll in as many studies as we can.

“So, in some senses, Lily is very unique.” Dr. Helbig was talking about Lily and her specific presentation of STX BP1. I knew this, but I didn’t really understand how unique.

Today, the vast majority of children being diagnosed with STX BP1 are infants and they are often diagnosed because of frequent infantile seizures. It is called epileptic encephalopathy for a reason. Lily had no such infantile seizures. Roughly 30% of STX BP1 patients remain non-verbal well into adulthood. At age 20, she is quite verbal. Her sister Ella and I often laugh because when Lily was younger, we spent hours and hours and hours trying to teach her how to speak. Now, she won’t stop talking. She wants to talk with anyone and will often call people on the phone. Often.

Dr. Helbig showed me several charts with data from tests of STX BP1 patients and fine and gross motor skill tests. The dot representing Lily was on the upper right. She was far older than most patients and also had demonstrated abilities not common amongst patients. This particular chart shows her expressive communication, what we laymen call “ability to talk”. You can see two things from the chart. First, she’s older than all of the other tested STX BP1 patients and two, her raw “talking score” is higher than most.

“We’re very curious about her version of the disorder. [de novo c.1510delA mutation in the STXBP1 gene] It presents as far more mild and less severe than many of the other patients we see.”

These tests and measurements are tricky for special needs parents. There are some, like head circumference and special EEG’s that are just a simple measurement. Others, that measure physical abilities, cognitive abilities, expressive and receptive speech, are devilish in the details - see this blog.

Lily has done a test called the Baley’s test several times. It involves a series of questions around her arranging blocks. As I sit watching her, I’m struck by the fact that many of her abilities are not reflected in this test. She now can order off of a Dunkin’ Donuts or Starbucks app with fairly high accuracy. Arranging blocks in the shape of a small train not so interesting. The test is revealing not that she’s incapable, but that she’s bored.

At the same time, after talking with Dr. Helbig, I feel a special obligation. As the dad of one of the older patients, I feel like Lily can be a model. No matter her presentation, I want to yell to other parents, “They’ll grow more than you can imagine.” Better test results will make my yell a little louder.

If you had told me fifteen years ago, even five years ago, that Lily would be where she is today and be able to do what she can do, I would simply have not been able to see it.

We continued the tests. Lily was feeling good this day. A lot of high fives. A lot of energy.

Dr. Helbig had both inspired us, and left us with the mantle of leadership. Lily was a model for other patients. She could show them what could be done.

And, so, here we go. I signed her up for a Spartan Race and a month after that, jiu jitsu lessons. Keep reading. More chapters to come. We’re off to show what an STXer can do. :-)

We’d been building towards this day, honestly, for about two years. We were inside of Fenway Park for the Spartan Stadion Race. Over three miles of up and down with twenty different obstacles, from carrying things, hurdling things, and crawling through things, it was going to be a lot. We had a team of about 35 people who would help Lily through or do obstacles for her.

But… half a mile in….

And Lily just sat down. No more. She was done. Just sat down on a stool, looked at the obstacle, which would require her to crawl on her hands and knees under bungee cords, and crossed her arms.

There were about thirty people of her team, who were now through the obstacle and waiting. The other special needs kids from Boston Ability Center were well on their way through the course. And, I was wondering if I had bitten off more than Lily and I could chew.

Ever since Dr. Helbig of the ENDD Clinic at Children’s Hospital of Philadelphia had spoken about Lily being unique and an example, I had been trying to find ways to do that, to have her be an example for others.

I had done a couple of Spartan Races at Fenway with a very close friend of mine, Ben Dunay. I’m not very good or very fast. There are obstacles that always get the best of me, but I wrote the organizers about a kid with special needs progressing through the course, and they were 100% supportive. So I emailed Ben and two other guys and asked if they’d help me help her. Within 24 hours, Team Lily Spartan had grown from the two of us to five. I told a friend of mine, Ronda Rocket, who runs a CrossFit gym about it and within a week, twenty of her students joined as well.

I’d gotten special t-shirts. Spartan Race STX BP1 2025. Team Lily (in zebra print for rare disease). We all had them.

At the center of all of this is a kid who is still somewhat unsteady going downhill on uneven ground. There were a lot of reasons to say it wouldn’t work and that perhaps it was a stupid overreaching dad idea in the first place.

As I recruited more friends to join us, I pretended not to answer when the questions, “What are you doing and will this work?” swirled in my head.

__________________

I listen to a lot of motivational podcasts put together by a guy named Ben Lionel Scott. They are fairly intense. I like them. They remind me to keep going, to stay committed to these goals. They remind me about working hard, staying dedicated, and working through challenges.

I even purchased a couple of t-shirts for myself - “No Excuses” and “Trust the Process” . They are really just reminders for me, more than anything else.

I had begun talking with Lily about pushing through hard times. For her, it is when she gets emotional flooding. We talk about taking a minute and breathing. Working through it.

My “muse” as it were are the Ben Lionel Scott podcasts:

“Success is not a comfortable procedure. It is a very uncomfortable thing to attempt. So you gotta get comfortable being uncomfortable if you ever wanna be successful. Start putting some pressure on. Put some pressure on yourself.”

Lily’s muse is Taylor Swift. She wears exclusively Taylor Swift shirts and listens to her music on repeat.

___________________________

We sat down in front of the bungee cords. I turned on Taylor Swift. And just sat and waited. I was having a hard time trusting any process.

One of the strange things about parenting a kid like Lily is that the usual tools of reasoning and explanation don’t really work.

When Lily’s older sister Ella was young, we did a 5k’s together. As she’d get tired, I’d lie to her about how close we were to the finish line. I’d glance down at my watch knowing that it had to be about half and mile and say, “just a couple more minutes” It worked.

But right now, Lily and I were a long way from the finish. Too far for that.

For Lily, more words…. more convincing…. Not so much. So, I listened to Taylor Swift and waited.

She looked up, saw some of her teammates encouraging her and, like a light switch, wanted to crawl.

I simultaneously wanted to cry with joy and also knew we had two and a half miles to go.

One of my favorite episodes of Ben Lionel Scott is titled, “Focus and Execute” It starts with Jocko Willinck, one of the authors of Extreme Ownership and he says,

“You know who’s gonna bail you out?

You know who’s gonna come in and rescue you?

You know who’s gonna come and save the day?

No one.”

But after the bungee cords, that actually wasn’t true. It was time for me to step aside and get out of the way. You can see from the picture, thirty people behind her, up and down stairs she went.

Up and down stairs she progressed with others on the team encouraging her, joking with her about stealing meals, and just being with her.

Ben Hall, one of the guys from CrossFit Launch pad helped her with the Atlas Ball.

He and John Soeder, one of the original three who signed up, helped her with the sandbag lift.

Brendan Downey, another of the original three, progressed through the sandbag carry with her, and I just stayed out of the way and took pictures.

I even tossed the javelin with her. I was so excited because she’d been practicing javelin for a couple of years with Unified track, so she was happy to see it again.

Things were going well, and then they weren’t.

The journey up and down the handicap ramps to the top of Fenway were too much, and she just stopped. Ben Hall snagged me and said she needed help. She was gassed out. Stressed from a hard day. She just stood with her hands folded and refused.

With Ella, who is neurotypical, I worked hard to open up the process, to explain why we were doing what we were doing and what she might learn, the example she could set for her teammates and coaches. I’d talk about commitment, lessons learned through suffering, being grateful, not complaining.

This is a tool kit for which Lily was not ready. So I needed other options.

I waved on the others, and placed a call to Comella’s, where her friends worked. Gabe, Mario, and Nate all encouraged her. She perked up and we continued to wind our way in and out of the stadium steps. By now the rest of the team had progressed and I could see the finish down on the field. We had two more obstacles she’d do (push ups and box step ups) and about a quarter mile. And she sat down again.

One racer asked if we were o.k. Others filed around us.

Ben Lionel Scott tapes played in my head.

“Don’t Rush the Process, Trust the Process”

Jocko’s voice played in my head. At this point, tt really was up to me. Just me and Lily.

And we sat and waited and listened to Taylor Swift, “All Too Well [10 min version]”

“Go Home. All Done” she said to me. Several times.

And I waited.

“O.K., go home.” I lied.

I pointed to one of the volunteers and said we could go give him a high five on the way home. She recovered, and we jogged through the visitors’ locker room at Fenway, which thankfully contained not one but two nice young male volunteers. Apparently Lily is never too tired to be inspired by that.

We did two of the ten push ups, and got to the box step ups. I grabbed her hands and we stepped up together. We did all “15” (counting by fives….)

The rope climb and A frame would have to wait till another day. So would burpees with a 55lb weight.

Through the forest of pads where her cousin Sarah was waiting to push through with her.

She crossed the line and she got her finisher medal.

Test Days had come. They were not free.

And Lily had passed.

Postscript:

After the race, I spoke with many members of her team. To a member, they spoke of how being part of the team had changed the race for them. Many of them had done Spartan races before, blowing through as fast as they could, often in less than half the time this day’s race had taken. Slower and more meaningful, part of something larger. It was a good reminder for me. Sometimes it not being just up to me allows Lily to share her light.

[This blog is about the joys and challenges having a daughter with disabilities that arise a rare genetic condition STX BP1]

“Tell me what you are trying to test.” I was getting a little testy myself. The day at Children’s Hospital of Philadelphia ENDD clinic, always long, was getting longer, and we were only about halfway through.

The physical therapist needed Lily to hold her arm out at length and point or touch something. He had attached a tremor gauge on her wrist and when her arm was extended, the device somehow measured how significant her tremors were.

Lily has long had significant tremors in her hands. It made drinking from a cup, pouring anything, writing on a piece of paper a bit of an adventure. She continued to use infant sippy cups well after entering adolescence to avoid spilling when she drank. We used wrist weights when she was learning how to write and also larger grip pencils. Lots of OT adaptations.

So, we strapped on the devices, I opened my phone to pictures of a trip to a Bruins game with high school classmates,

“Can you point to Nate? Addison? Kyle?”

She looked at me quizzically.

I pulled up Taylor Swift, “All Too Well [ten minute version]” for the zillionth time.

Can you play Taylor Swift? Hit the button.

I held up my phone from across the therapy room.

She reached out from her chair, stretched, and hit play.

“Did you get it?” I asked the therapists. Yes we had. We repeated the process for her left hand and I wasn’t really sure how it had what we’d measured, but he had what he needed.

These tests are often a bit of a conundrum for all parents, but especially special needs parents. We want tests to demonstrate what our kids can do, not what they cannot. The stories of standardized tests not allowing kids to demonstrate their gifts is well-known. The SAT, AP, GRE, LSAT, GMAT, test morass has been debated ad nauseum, but for special needs parents, the stakes are a bit different. These measurements are used in the pursuit not of some sort of diploma. It is about life. It’s about a potential cure.

The support we give our kids isn’t to get a few points higher on some standardized test, it could be simply to walk or to communicate even basic ideas like if they are hungry. To get an idea of this, spend a few minutes watching the videos of Mila Johnson, an altogether typical rare STXer.

Lily went through hundreds of hours of therapy to learn how to walk, talk, feed herself, self toilet, and dress herself, to be at some level of independence, and it is a fraction of what most STXers will undertake to achieve these goals.

But there is even more to it than that. As we start down the road towards medications that might help or even cure the condition, it’s critical to have accurate measurements of what patients can do, to see if it is medicine, or just external therapy, that is changing physical abilities, or improving cognitive abilities.

So, we finished the physical therapist’s tests and then came the speech therapist. I’m not sure this therapist was having the best of days, but Lily certainly wasn’t. I was watching the disengagement rise. Imagine, if you will, sitting next to your child taking their SAT, knowing they have all the answers, but the test administrator is speaking to them partially in German. They begin to get frustrated, disengage, and do poorly.

Finally, I intervened and pulled the speech language pathologist out in the hall to ask her the same question as I had asked the PT.

“What are you testing here?”

She replied that after four wrong answers, she stopped that section and moved on.

“Your test is revealing that she’s tired. It isn’t revealing her abilities,” I replied frustrated. “We need to work on this together, to help her perform so you can see what kids like her can do.”

It was about STXers, it was about larger things. Science. Medicine. The rare disease community. It wasn’t only about Lily. We worked through the test, though I’m not sure she got as much of what she wanted as the PT had.

Finally, one of the other clinicians came in and asked if we could get a blood draw and EEG. They felt bad. More tests. I replied I needed to know exactly what they needed and we’d make it happen.

I sat down with Lily. We’re not bailing out here. I explained what we needed - a blood draw and a funny hat. And then fly home and then… I spun out the whole agenda just like she wanted. She needed to know “what next, what next”.

And it worked. We wrapped up another visit for the sake of science contributing to the larger community.

“I’m proud of you Lily. You did a great job with the needles.” She smiled, and off to the airport we went.

“Wake Up, breakfast, shower, get dressed, open stockings, lunch with Uncle Walter and Aunt Anne and NanaJudy, open presents with Ella, and home and rest.”

Lily loves to know “what next”. It settles her.

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One of the effects of her rare disease, STX BP1, which causes fine and gross motor skill deficits and cognitive delays, is that her processing skills are not typical. The image that often comes to mind for me is a motor where the gears struggle to catch. They do sometimes, but not consistently.

Because of this, the world coming at her seems to be coming at her faster. The analogy I use is if people were constantly speaking with us in three different languages at the same time. It’s just harder for her.

We write the agenda every day on a whiteboard both in her room and in the kitchen. We do agenda after agenda after agenda. All day long we’re about what’s next.

Usually the agenda is:

Wake up, breakfast, shower, brush hair, brush teeth, Taylor Swift shirt, get dressed, Dunkin’ Donuts, go to Wellesley High School, home… and then whatever afternoon activities she has that day.

But today was vacation. Christmas.

My cell rang.

“Hey Ben,” it was my mom. She was living at Brookhaven in Lexington, a nearby retirement community where she had moved two years before from rural Maine.

Brookhaven was right near where Lily did therapeutic riding, so we’d often see NanaJudy after riding lessons.

“I had to call an ambulance. I’m at Newton Wellesley Hospital.” My mom was 90. Lily and I hopped in the car, and headed over to the hospital which was only five minutes away. Lily had been to the hospital a few times before, so was comfortable checking in, putting on a mask, and heading over to my mom’s space in the ER. Eighteen months previously, NanaJudy been hospitalized by a fever. We took her to Newton Wellesley and spent three days there. Lily was pretty comfortable, as one can see. She climbed into my mom’s bed as lunch was being served. And bingo, almost fell asleep.

She had actually been to the hospital with my mom six times in total. Part of that was from necessity if caregivers were not available and a couple of times it was by design.

Even when I could find a caregiver for Lily, I often take her into these public spaces. For me, there are several things going on. First, dads do this work of juggling too. Moms do it all the time. Conference calls, Zoom calls, trips to the hospital - I want to have her in these public spaces with me. Second, it helps Lily. One trip to MassGeneral Brigham with my mom was about five hours total. Lily had to wait, be patient, and learn. Finally, public spaces are often for others’ education as well as they learn about Lily. All of this is for another blog episode or two.

It is tricky to tell what kids with special needs can understand about situations like this. The axiom is that they understand more than a parent can tell, but really how much more I don’t really know. Lily just doesn’t have the words to express what’s going on inside. Nor does she really have the skills to discuss this type of emotion.

In 2020, my uncle passed away from COVID. Lily and I visited him in his last days, breathing quietly, unable to speak with us. She still talks about it like it was yesterday. “Oof, Andrew [my cousin] father pass away. From COVID” she’ll say at random moments. Yes, he did. Five years ago. She reports it like it was last month.

Lily has been in hospitals numerous times for tests for her own visits, but, one of the true blessings I have as a parent is that she has never needed medical care that is related to her rare disease. She’s had wisdom teeth pulled and gone in for regular six month check ups and tests at the ENDD (Center for Epilepsy and NeuroDevelopmental Disorders) clinic at Children’s Hospital of Philadelphia, but the latter is for studying her progress, not treating her. We’re lucky. Most of the children who have STX BP1 have extensive and complex medical needs. 80% of them have recurrent seizures. 30% of them may never talk beyond a few words.

On Christmas, we went to see my mom at Newton Wellesley Hospital. We sat quietly for a couple of hours. Lily visited with a few nurses who were on duty, and then we went back home to open presents with Ella.

“NanaJudy sick. In hospital.” she kept telling Ella. I was struggling. Over the past several years, my mom had said openly that every trip to the hospital could be her last. Opening presents wasn’t very joyful.

When I was 22, my dad passed away very suddenly at 58, the age I am today. December 3. I honestly hated Christmas for five years after. It just wasn’t joyful. These memories washed over me.

I asked Ella to take Lily to her mom’s a day early and headed off to the hospital so that I could be there late into the evening with my mom. I sat with her and played King’s College Christmas service, a tradition our family had since before I was born. The quiet music washed over us as she slept.

Within a few days, it was clear my mom wasn’t getting better and soon family began to gather.

By the New Year, it became evident that she would not recover.

Lily had been seeing family members cycle in and out of her mom’s house and mine, but she hadn’t been back to the hospital. As my mom’s medical proxy, I was having a hard time juggling - spending time with my mom, talking with doctors, just listening, making end of life decisions, and sharing with Lily what was going on. The shortcomings in my own language were glaring when talking with her.

January 7th, medication took effect and my mom slid from consciousness. I knew I needed to bring in Lily.

Lily, who had accompanied her to the hospital on Christmas Day, came for one final visit a day later on January 8th.

On January 10th, my mom passed away.

A year later she still talks about NanaJudy being sick and in the hospital.

I don’t have any great insights about how she deals with grief and death. I know it stays with her. Lily’s not unique in not talking a lot about her feelings with these things. She might well have learned that from her dad.

“Nope, we’re good to go. See you at Albertus Magnus.” she replied.

I walked out to my car for the two hour drive down to New Haven CT for the swim meet, leaving Lily behind to ride in a college sports team bus ride.

Kaylin is the assistant swim coach for Regis College men’s and women’s swim team. I had met her a month before as Lily began practicing with the Regis team. Lily is part of the Wellesley Public Schools Launch program that is housed on Regis College campus. Students who are 18-22 are still supported educationally and have a chance to integrate onto campus. When Lily started there in September, I didn’t know a great deal about Regis. A couple of events later, discussions with some administrators, and then Diana Matthews, the swim coach, made it clear. The ethos of the place was inclusion.

This was critical. Lily is a kid with a rare disease, STX BP1, that leaves her with a lot of delays. Her educational arc is different than neurotypical kids, like her sister. And, here we were, a kid who still struggles with getting dressed, who has a lot of emotional flooding, somehow being part of a college sports team.

I had two hours to listen to podcasts. I’ve been working hard to glean wisdom from all sorts of different quarters to see how I can apply it to being a better dad for Lily.

Jocko Willinck talks about Extreme Ownership. That it is my failure. It’s led me to focus on what I can do, not what I might believe others are not.

Dave Berke, also a Navy SEAL, talks about the OODA loop, which U.S. Naval Aviators used in Korea to best opponents who were better equipped. It stands for Observe, Orient, Decide, Act. It’s tightened my learning curve.

Taoism speaks of Wu Wei, effortless effort. This is still an “area of growth” as it were for me. I’m working on it, less than successfully.

Buddhism speaks of letting go, releasing desire as it is the root of all suffering. See taoism ditto.

The Ben Lionel Scott podcasts that talk about being comfortable being uncomfortable and getting through test days. I started taking jiu jitsu lessons, which have guaranteed that I am uncomfortable.

Today, I decided to listen to the Hidden Brain podcast, “Cultivating Courage” It speaks about all sorts of steps that people take to turn uncertainty into risk. It has the story about a tightrope walker Philippe Petit, the subject of the documentary Man on Wire. He planned for years a walk between the twin towers in New York. It reminded me of Alex Honnold, the subject of the film Free Solo. In both cases, people did things that average folks would find terrifying, but the event took years of practice, years of planning. They had assessed the situation and trained and prepared, both physically but also psychologically.

The Hidden Brain podcast continued with other examples of where people had gathered around them a support system to help them, in the words of Shakespeare, “screw their courage to the sticking point”. It described the methodical steps Frances Hougen had taken as a whistleblower at Facebook.

Now, I’m not pretending that what I face is anything like any of these people faced. I’m not a Navy Seal, or a highwire tightrope artist. I’m not a whistleblower or a world famous rock climber. But as I try to take wisdom from the ancients, like Jesus, Buddha, or Lao Tse, so I can take wisdom from more modern folks.

If I can prepare for my experience like Alex Honnold did for his, gather supporters around me like Frances Hougen did, then perhaps I’ll make things smoother for Lily, to be more effective as her dad. Others’ wisdom learned from doing what they do helps me be better at what I do.

As Lily entered a new arena at Albertus Magnus College with a new team and a new coach and a new everything, as a dad, if I could incorporate some of these ideas, the chance of things going better was higher. I knew the potential for things to go sideways was high, and it didn’t take long for that to happen. Frustration over not being able to get her swim cap on boiled over and prevented her from wanting to get into the pool for warm ups. I wasn’t getting it right. Diana Matthews, the coach, got her a different cap, JP, her erstwhile friend on the swim team, got her into the water, and Lily was proud. I was struggling to know when to support (intervene) and when to fade back. Lily’s struggles continued.

You can see from the video that she couldn’t get up on the starting blocks, something she’s done probably 100 times before. JP and others were helping, but it wasn’t happening. They were determined though.

The meet started. Diana had to look at the rosters for each event and see where there was extra lane space.

Lily came over and sat with me as I timed and listened to music, but we ran into a couple of false starts that were eating into her reserve. Diana had arranged for her to swim alongside the men’s mile swim (Lily would swim only 1 or 2 of the 33 laps), but Connecticut rules say women and men cannot compete in the same event at the same time, so that was a no go. Lily and a few teammates walked back to the waiting area. Attempt number two was for the women’s 200 backstroke. This was where things went south. Fatigue, confusion, frustration boiled over and Lily started crying, screamed at Diana, and threw her phone onto the deck. It was bad. And clearly so for anyone who was watching.

New team, new coach, new venue, and inside my head I was screaming to pull the plug on this and load her into the car. Diana calmly tucked the phone into her pocket and gave Lily space. She was unfazed. I was not. I sat back down in the timer’s chair and Lily calmed down. Attempt number three.

JP came over enthusiastically and asked if we could call Comella’s, the Wellesley pizza store where Lily’s friend Nate works. She thought that would key up Lily. It did.

“Show Nate” JP laughed.

“I have to tell Nate” Lily replied as she hopped up out of her chair.

Up on the block she went. Another teammate had my phone and filmed it all.

“Swimmers take your mark!” Beep. Lily and JP jumped in at the same time.

Lily won! Because no one else was swimming the 50m freestyle/breaststroke/dolphinkick event.

As she finished her 50m, there was a lot of cheering and clapping. She and JP exchanged high fives

I got Lily changed out of her suit and she announced to me that she wanted to swim with JP again. I departed so she could ride home with her teammates, one of whom texted me the pictures below.

As I listened to more podcasts on the long drive home, I thought I should have listened to the wisdom of JP, Diana, and the Regis swim team. “Dad, relax, we got this.”

Friday, I’ll listen to JP, stay in the stands, and won’t worry. Whatever happens it’ll be o.k.

On the road to autonomy

Lily was quite excited.

“What do you want to order?” I asked as we hopped in the car.

“ ‘potle quesadilla guacamole. No beans.” Her verbal skills are such that she can now be understood without me. Huge step.

But, today as we pulled out of the driveway, she wanted to order from the app and then go into the store “By myself!” to get the bag with the meal.

Ordering from apps had not come without bumps.

We’ve ordered a couple of extra strawberry dragonfruit refreshers. Once we ordered a really nice meal for a Panera in Connecticut because I forgot to adjust the restaurant. Her frustrations have led to tossing the phone on the car floor. She gets flustered and upset when it doesn’t work the way she wants.

Helping people like Lily on the road to autonomy is a team effort. I have to let go, but someone on the “other end” has to assist her when things go wrong, which they will. We’ve been going to the same Dunkin’ Donuts two blocks from our house for two years, week after week. We’ve gone from me interpreting her order for the staff, to her handing the money over, to me backing away, to me finally sitting in the car while she goes in by herself. I know the entire crew knows her and understands her and what she wants to order. It works.

We were starting the same process at the local Chipotle. She was trying out the step of ordering from the app, and then I pull up and stay outside, while she gets the autonomy of picking up the meal on her own.

Today, we were good to go… until we weren’t.

She hopped out…. And I could see her standing at the set of shelves where “to go” orders sat and she was frustrated. Then she began to pace away from the shelves. I parked and walked in. Nothing is simple.

They didn’t have the right container and asked if they could substitute. The experience had robbed her of the momentary joy she had anticipated and now it was robbing her of the food she wanted. For a kid who doesn’t handle change as skillfully as she might, it wasn’t going well. She began to cycle. The woman at the counter got testy with me about the order. Things were going sideways quickly. Getting in a spat with an overworked and underpaid and underappreciated fast food worker was not where I had intended to be.

Lily continued to cycle.

I paused and thought of lessons from Jocko Willinck’s Extreme Ownership on leadership.

It was, actually, quite simple. It wasn’t about the Chipotle worker. It was about me. What had I done wrong and what did I need to do to fix it.

“I thought you said the substitute would be o.k.” she snapped at me again.

I quietly turned to another staff member and asked simply for a quesadilla with lots of sour cream. No beans, a side of guacamole. It arrived shortly. Lily self-regulated. And we were off.

But I knew that I could not leave it that way. The old me would have been filled with piss and vinegar. Insulted, wronged, all that negative emotion cycling around. It also wouldn’t get Lily to where I wanted her to be, which was farther down the road not to resentment, but to autonomy. I knew I needed the staff at Chipotle to do that.

Instead I got Lily in the car, pulled out a size medium t-shirt and returned to the restaurant. I called over the young woman and explained who Lily was, explained why she’d been so upset.

“She’s got a rare disease. About 300 kids in the country have it. It’s here on this shirt. She’s trying. She just wants to connect with you and be proud of her independence.”

“She’s on a road to autonomy. I’ll need people like you along the way. We’ll be back. She’ll need your help to be independent. Here’s a t-shirt. Now you too are part of Team Lily.”

And off we went to riding. I’m learning. I’m growing. And I need as many fellow travelers on Team Lily as I can get to help her along the way.

“What are you going to order?” I asked Lily as I slid out of the seat beside her to head out of Maugus, one of the local diners in Wellesley.

“Scramble egg” Lily replied. “Ketchup”

“And to drink?”

“Coffee. I want coffee.”

We’d arranged to have breakfast with Alli Jones, one of Lily’s friends who was home from her first year at Wesleyan University in Connecticut and I wanted to give them time to hang without me.

After hundreds of hours of therapy, and, honestly, a year in the verbal flood of a regular high school setting, Lily’s verbal skills had finally expanded to the point where she could actually order without me.

It took me a while to learn to not interfere with Lily’s friendships with neurotypical kids. Worry about making things go smoothly, whatever smoothly is, had led to hovering too much and also, honestly, thanking too much, as though hanging with Lily was more of a childcare favor than a friendship. My concern, fear, and old vision of Lily being a “burden” (remember Doug Curtin, the swim coach telling me not to use that word) was interfering with her connecting with her peers as true friends. I had to learn. And, it turned out that Alli was going to be one of my best teachers.

I first met Alli four years before sitting down in the diner. While Alli’s first sport was basketball, she also played soccer, and, as a goalie, crossed paths with Lily’s older sister, Ella, who was two years ahead of Alli and also played goalie in high school, so they knew each other both on the high school soccer field and also in the TOPS adaptive soccer and basketball program that Lily had been a part of for several years. Ella was a volunteer and senior year coordinated the program. Then, after graduating, handed the coordination reins over to Alli, who had been a neurotypical peer for the TOPS athletes since middle school.

“I first remember meeting Lily in 9th grade. Lots of kids wanted to be her peer with all the high fives and laughter. She was a great bridge to naive early volunteers who didn’t know a lot about TOPS”

In her earlier years in the TOPS adaptive soccer and basketball programs, Lily was still only barely verbal. Most of what she’d say were few word sentences or, honestly, often parroting what neurotypical peers said to her. Her most effective communication was non-verbal - high fives and smiles. But she still struggled greatly to convey her own original thoughts independently.

Despite these communication barriers, away from my cautious and overprotective eye, her friendship with Alli grew. Alli’s senior year in high school, I took Lily to a basketball game. Alli was a senior captain. I let Lily sit on the other side of the gym with some kids she knew from Unified Track. It was still six months before Lily would enter Wellesley High School as a senior, so it was uncharted territory for me. Previously, I would have taken her and sat with her. This time, I was not monitoring / protecting (I should say interfering) with Lily’s interactions with her friends.

At halftime, there was a shooting contest. Lily wanted to shoot baskets too, but didn’t manage to get down onto the court in time. Then the athletes came out from the locker room and Alli saw Lily. You can watch the video below to see what happened next.

From a dad’s point of view, utter magic. But there was a lot that I didn’t see in that moment because I couldn’t. And here’s how Alli taught me to see more.

A year and a half later, I was texting her to set up the breakfast at Maugus, coordinating Lily’s friendship with Alli and I commented that the TOPS program had been great for Lily to connect. You can see from the text below. What I hadn’t seen was the benefit for the neurotypical kids. Alli showed me that.

We recently spoke on the phone.

“Coming home, seeing her progress, it’s been great because we have real conversations now at breakfast. I get to see her mature on her journey like I’m on mine. We’re different but we’re not. We’re both on a journey” Alli told me.

“It isn’t a performative friendship I have with her. I know her as a friend and I’m a lot less worried about being careful. The last time we had breakfast, Lily had some emotional flooding. She worked through it. Took deep breaths. We had a good time. There are neurotypical friends of mine who could learn a few things. She tells me about her other friends, what she’s doing. I get to see her grow too.”

When I am not in the room, when I am not at the table, Lily gets to have more autonomy, more decision-making, more connection. It’s true with parenting. All parenting. We have to let go and let our kids fly, even when we feel their wings don’t work as well as we expected they would when they were born.

I had had to learn to get out of the way and let the magic happen and friendship grow.

It’s good to have teachers like Alli to help me do that.

Alli at one of their many trips to breakfast together.

Alli and Lily after one of Alli’s college basketball games.

“+1 for a shield, +2 for plate armor”

The slight rattle sounded as the dice rolled across the soft table surface.

The conversation centered around damage, hit points, armor, and so forth.

We were at Battleground games in Framingham, a gaming store. We’d been to the store a couple of times before to get board games. Lily had met the owners. They knew her, but we’d never been in on a Dungeons and Dragons night. There were five tables each with its own dungeon master and five to seven players circled around for their respective adventures.

The nearest table in the back had an open seat, so Lily settled in at one of the tables and I stood back, thinking, again, “hmm, I wonder how this will go.”

I played a ton of Dungeons and Dragons in my youth, back in the 1970’s well before it went mainstream. I even went to a weekend-long workshop run by Len Lekofka, one of the original designers of D+D. I had collections of orcs, goblins, dwarves, wizards down in my basement to paint.

A friend of mine whose parents were evangelicals worried that I was being kidnapped into a Satanic cult. This was well before D+D went mainstream and even Hollywood.

I spent a lot of time in stores like Battleground. Maine, Montana, Ohio, New York, California, even Britain. There’s an interesting culture that has persisted over the years. Demographically, I’ve seen a shift from mostly white males to a greater cross section of the U.S. The folks in Battleground reflected this. More women. More people of color. It’s been a nice change.

But culturally, something persists. They are, almost without exception, very welcoming. Highly quirky, and very friendly.

So Lily sat down at the table and started chatting with the folks playing D+D. She knows nothing of dwarves and elves, thieves or wizards. She wouldn’t have a clue about hobgoblins, wights, or ghouls if they showed up on the board.

But chatted away. As they rolled dice, progressed through their adventure, she gave a few high fives, grabbed a milk from the cooler and sat back down, and was part of the community of which she knew nothing except that they were human beings. She entered a world where people weren’t just different cultures or races, but different beings altogether.

One of the challenges that special needs parents often face is where their child will fit in. While there are now far more opportunities for special needs folks, like Special Olympics, adaptive fitness, and such, plugging into what I call neurotypical majority environments is more challenging. The water is faster. The need to understand complexities is greater. Language, interactions, all of it, happens at speeds that she simply cannot access. There are too many ways to count that the neurotypical world is not designed for inclusion, but that’s another blog. And yet these are also the places Lily learns and grows the most. How to find a place where she can enter in is the challenge.

The adventure progressed and I stood back away from the table. One of the women at the table offered Lily a brownie from a box she was sharing. Another player joked with her about stealing dinners, her favorite and ever persistent conversational entry point. A third put some extra figures in front of her to play with so she could enter the game as well. They seamlessly transitioned between discussing the next attack and high fives. After about half an hour, it was time to go.

I asked Lily what figures that she liked in the store. She chose a dragon and an elf. We’ll paint them up and then she’ll be ready to bring her characters to the table. No one will care if their adventure actually includes a dragon (it won’t) or that the character she’s “playing” isn’t part of the dungeon master’s plan.

As she hopped into the car, I grabbed a t-shirt from the box I keep in the back of my car full of team Lily shirts and zipped back into the store. The dungeon master got a Team Lily t-shirt as we headed home that night. He’s now part of the team. We’ll go back Mondays and she can settle into the dungeon with some fellow travelers who couldn’t care less about how different she is.