Originally I began writing this about a trip to London with my older daughter. It was my graduation gift to her. She was 19 and was headed to college in the Fall. Given her social calendar and my responsibilities our time was limited. This trip would pack as much as I could into eight days. We would see the sights and it would broaden her horizons in life. There is a big beautiful world just over the horizon. Don’t limit yourself and become a townie like some of her friends were destined to become. I mapped out the recap in my mind – the long delayed takeoff at Logan, ascending to the very top of Saint Pauls, navigating the museums and stalls at the Portobello Road Market and Camden, criss-crossing the city by Tube or (thanks to Google Maps) by foot, sampling “British” cuisine – proper British breakfast for her / Fish & Chips for me.

I could go on and on. Perhaps, some day I will. But it occurs to me, there’s another story I could be/should be telling too.

*****

“Live in the moment;” a cliché, or maybe … an aphorism. Ideally it highlights the downside of pursuing goals – especially long-term goals. Stop worrying about tomorrow. Focus on what’s in front of you, the here, the now. In my mind, I picture a driver too focused on plotting a course on a map and ignoring the scenery passing by right outside the window.

My youngest daughter lives in the moment. It sums up much about her young life. Free spirit, in the classic sense, she is not, or at least, not any more so than other children her age. “She’s just a kid,” is the excuse some would say. I said the same thing myself.

But it’s more than that though.

When did I first became aware of my daughter’s situation?

Was it that time I took her to a park nearby with a big, exciting new jungle gym. She loved it. She and other kids played on it. And when they left I played with her – chasing after her as she clambered up the ladders and ramps and swooped down the various slides – including the corkscrew one. She ignored me when I said it was time to go. I’m nothing if not a patient man. I gave her some time. My daughter played by herself while I waited. After a while I repeatedly told her I was leaving. I even walked away. Not too far though. She was effectively alone. It started to get dark. She never noticed. She was “in the zone.” This happened a lot.

Or maybe it was the time she ignored my warnings to stop playing on a collection of dilapidated jungle gyms in a classmate’s backyard. An hour later I was in an ER waiting for a doctor to examine her left arm now bent at a strange angle.

It could have been her inability to read in second grade. Or how long she would stare at a screen – just soaking it in for hours. I’d drag her out and take her for hikes in the woods. We’d climb rocks or draw together. I’d take her sledding in the winter or the beach in the summer. At night I’d read her books but she could never seem to concentrate on stories. I was three chapters into “Harry Potter” when she complained that she didn’t know what was going on.

“Do you remember that time I took you to Canobie Lake and we did the water tube ride over and over again?” She glances up from her Kindle, ponders for a few seconds then shakes her head. Sometimes it seems like she barely remembers anything. “Remember when … ?”

I think she was in second grade when her karate teacher – a heavy-set guy named Kevin – asked me if she was “special needs.” I wish I could have acted outraged by the insinuation, but her behavior in a class stressing focus and discipline was borderline embarrassing. A few months later, at an IEP meeting one of her teachers asked if she “was on the spectrum.” Perhaps her delays are due to her age. She’s one of the youngest in her grade. I suggested she stay back. I’m overruled.

Every weekend we visit the library and pick out books for us to read. At bedtime I insist she read me a few pages from her books and then I read her a chapter from something I picked out for her. Sometimes, “Little House on the Prairie” for example, she seems mildly interested. More often, she’s bored. “I’m tired, can I just go to sleep?” She insists on sleeping in the nude and she wakes up repeatedly at night. “MAMA!” she wails. A weighted blanket cures that … somewhat.

During the day she likes to watch TV and grind her legs together rhythmically. I refer to it as the “leg thing” to avoid using the term “masturbation.” What eight year old does that anyway? “Is this normal,” I ask her pediatrician. Her doctor calls it “a phase.” Her special education teachers mention they have to frequently tap her on the shoulder when they catch her doing it in class.

Looking back, I suspected something years before her teachers mention ADHD around third grade or so. No parent wants to admit there’s something “wrong” with their child. But facts are facts and after the dislocated elbow incident and everything else, it’s time to face reality. The diagnosis explains so much: the delayed development, the hyperactivity, the impulsiveness, the fixation on instant feedback.

Thankfully my town invests a lot of resources for kids with special needs. My daughter attends special classes with additional assistants to lend a hand. In the meantime, she is prescribed a small daily dose of Adderall. As loathe as I am to resort to medication, the difference is striking. Without she is a ball of energy, sometimes chattering and singing before retreating to her room to play video games or watch videos. Without intervention she’d only emerge for the occasional bathroom break. With medication she’s like a lot of other girls her age – still staring at screens – but is much more receptive to putting it down and doing something else – drawing, doing homework, eating, or occasionally reading for pleasure. This represents about a six to eight hour window of time. And then all bets are off.

Everyone agrees she does fairly well in school. She’s allegedly friendly, but has few friends. In fact, the older she gets the less friends she has. And this doesn’t seem to bother her. At the age of 12 her sister was constantly having sleep-overs and visiting a wide circle of friends. That one was/is a social butterfly. The other is not. Every kid is different and I try not to compare.

“You’re 14. You’re too old to be hanging around the house all the time. Call your friends. Go out and do something!” Please for both our sakes … do something.

“Um …. OK.”

Nothing happens though. When I ask, she tells me no one is responding to her texts. I feel bad. She just shrugs her shoulders. “I have friends in my game,” she mentions as she stares at her Kindle.

“Friends.” Sure.

The thing is, her behavior reflects delayed development. I’ve long considered her several years younger than her biological age. Today she’s 14. While her “friends” are wearing makeup and fashionable clothes, listening to pop-music and texting boys, my daughter is in her room watching creepy animated videos on YouTube. To further underscore this growing division she announced her pronouns were now “They/Them.” Then followed up by telling a friend who she used to school with she “Loved” her. They don’t talk anymore and Q walks home from school by herself.

Over the last few years, there was one girl who really paid attention to my daughter and made an effort to be her friend. To foster this relationship I set up playdates for the two of them, took them on excursions to the Blue Hills, the town pool, the mall, wherever. Because this girl lived nearby she came over almost every morning to grab a ride to school with us. She made my daughter a birthday card and included a beautiful, heartfelt message inside. My daughter didn’t seem to care. Eventually, her friend got the hint and stopped coming around.

“Hey, what’s up with you and Natalie? Why don’t you talk anymore?”

“Um … I don’t know.”

“So we’ve noticed your daughter exhibits some possible signs of ASD.” Her last IEP meeting tosses this tidbit in towards the end of the assessment.

What does that mean? A number of things which I’m still trying to figure out. For me personally it means she is frequently a challenging person to like. My role as a parent is to love, nurture and protect this child regardless.

But, it also means there will be no trip to London for her. Or anyway else for that matter. I’m afraid she may never leave this town.