I woke up on September 3rd to the news of Walter Becker’s death. Steely Dan had been a huge part of my childhood, and of my father’s identity. As a kid, riding in the car with my dad, I was ordered to listen to the lyrics to Steely Dan songs as though they were important lectures or sermons.I can identify the single note in “Do It Again” during which Donald Fagen became visible, entering the stage, the first time we saw Steely Dan live, and can remember my dad whooping with admiration.

It had been a strange coincidence when Leon Russell died so shortly after my dad did, but that death was also instrumental in processing my father’s death. Leon’s death had guided me through the actual sadness and loss of grieving that my father’s death had not provided. I didn’t need Walter Becker’s death for anything; it was an unacceptable loss.

It took me a few hours to realize we had, intentionally, decided NOT to go to the last concert Steely Dan had had here (which was with Elvis Costello. I really can’t believe we missed this.) That was it; I had blown it; I had made a Steely Dan fan out of Tucker and we were never going to see them live. Tucker said that having missed that concert was pretty much the first thing he had thought of when he heard about Becker’s death. I felt awful.

The death of Grant Hart was a sucker punch and the loss of the voice that I had clung to almost exclusively in 1990, the year that my parents had separated. I was able to spend that day with musichead friends, to whom I did not have to explain my disbelief and sense of loss, but September 2017 was turning into a really long month. And we were well into it before I remembered that the actual first anniversary of my dad’s death was also on the calendar.

Last year, we had had our pet rat, Pocket, put to sleep on September 13th, because we were sure he was going to die soon and we were afraid he would do it on Béla’s birthday. But I had not equated the anniversary of my dad’s death with being “a week after Béla’s birthday”, because on Béla’s birthday last year, we still had no idea my father was so close to death. Once I recognized that the date was coming, I started to feel it. In the economical euphemism used by Tuck’s twin years ago, I picked up a “speed wobble”, my coping mechanisms steadily breaking away.

And somehow, Béla’s birthday on Friday was probably one of the most enjoyable kid birthdays I have experienced between the two of my children. The pressure I’d felt to be “okay” for his birthday was completely removed the night before by a friend who reassured me that no matter what I did or didn’t feel up to, the kid would get over it and I still needed to take care of myself. This was enormously helpful. We got up late (we often get up pretty late on homeschool days), and decided that even though Tuck and Ben were out to work and school, Béla would open his “big” gift right then: it was a red Yamaha keytar, and he loved it. We played with a new-to-us modelling compound called Sugru. We listened to a lot of amateur keytar-playing. Ben picked up Claudia so she could follow through on a midday shopping trip for her brother, coming home with something with which he was delighted, and none of us would have known to get him. Ben took the kids plus one good friend to Dave and Buster’s for about three hours in the early evening — something that would have been misery for Tucker and for me, and we weren’t missed. We had ice cream cake at home that night, no candles, no singing — Béla-style. (And exactly like my dad.) It was a good day.

We have, very slowly, since the beginning of the summer, been making changes to the house. Two bedrooms are switching owners, two multipurpose rooms are switching purposes. New beds, hopefully good enough to make it to the teen years, have been ordered, and in Claudia’s case, assembled. I have been able to fund much of this with the money from the sale of my father’s home in Bucks County. Doing brain transplants in the rooms of your own house can be harder than moving into a new house altogether. There are no empty rooms. It’s like a sliding-tile puzzle. And it has been this way for months, with various kids sleeping on various floors waiting for the paint fumes to subside, insisting on having the soundtrack to Hamilton playing all night long. Everyone and everything has felt a little displaced.

But in the last month, I’ve been socializing more than I have in a year — since my dad died, since we began homeschooling — and for that I am really grateful. I am still far from up to speed on self-care but I’m working on it, and not punishing myself too much for not doing the best job. The kids are doing great educationally and having a lot of fun, and have made really nice new friends. Grad school for Tucker has been a huge transition and I miss him being at main campus, and miss his faculty and advisors. He says that the med school has a “Drexel vibe” and is happy.

On September 3rd, the day that Walter Becker died, Ben and I had driven the kids to Germantown for what is, this fall, a Sunday full of homeschool activities. Because I felt such a seismic shift due to Becker’s death,  I took two direct actions towards life changes for myself that day. One is likely to be the most significant long-term change for our family since Tucker became a part of our household. It continues to unfold with the same sense of slightly-out-of-control Fate that Tuck’s arrival did, and I’m just riding it. The other one, I have to get to work on myself. It is the first anniversary of my father’s death, and that means it is basically Halloween season, which means it’s also pre-Every Favorite Holiday season, and Parade season, and that gives me a lot to look forward to.



Students in the College of Medicine had to, during orientation, have their portraits taken in lab coats. While most used a lab coat from the school as a loaner for the picture, Tucker brought a lab coat with him; my father’s.


I did not expect to love the picture so much. And I really do. It does exactly what pictures are supposed to do — it documents the growth and progress that have actually etched themselves into his face.

As far as I know, it’s literally just an ID photo. They had changed the date of his session on him at the last minute, and he had to rush home and shave; circumstances for a good photo were not prime.

But he just looks so ready.

I texted the image to Claudia today after Tuck had sent it to me; her commentary is as good as the picture itself.


I’m sure my dad would just be happy his lab coat was getting use by someone who wanted to be in it.




I expected myself to have come up with something to say by now about the fact that Tucker graduated from college in June, but so much happened almost immediately following it (a bad concussion for Béla, a week in Woodstock, NY for everybody), that I never got to it.


Tucker graduated with Honors with Distinction, and was the only member of his elite graduating class to graduate Summa Cum Laude.

We are particularly grateful to Tuck’s undergraduate advisor in the Custom-Designed Major Program of the Pennoni Honors College, Kevin Egan. That FERPA waiver wasn’t for nothing, and between the applications to graduate programs and the last term at Drexel, not to mention his Senior Capstone Project some of those classic ASD executive function shortcomings were kicking in for Tuck, and Ben was checking in with his faculty mentors, with some very specific checklists, pretty regularly. As you can see Kevin’s big smile in the photo above, so can you recognize it in silhouetted profile at Tuck’s Capstone presentation. His support is one of the many things we will miss about Drexel’s undergraduate program. We could not be happier that Tucker is staying within the Drexel system; this is a place where he is understood and valued.


Tuck’s graduation events were spread out over two days and he kept things — from his guests, to what graduation-related decor I was allowed to put in our front window, to what he wanted to do after the ceremony (which was: get a shrimp cocktail tray, like one would get for a party, but not go to or have a party, and just eat the shrimp at home) — the way he wanted them.



More valuable than the medals or accolades is the fact that in the month since he graduated, Tuck’s had no dark circles under his eyes, and has had literally glowing skin — he is less stressed, and has had more free time, than in the last four years. In Woodstock he was able to spend hours upon hours doing jigsaw and logic puzzles.

He begins in the neurorobotics lab that he will be starting his first rotation in for grad school this week. I will miss having him at home so much. We all will.

We tried to take his ID photos for grad school today.

We will try that again tomorrow.




Tucker has been accepted to the MS Neuroscience program at Drexel Med (DUCOM). He will working in a neuro-robotics lab.

His course work counts directly towards his PhD.

He’s relieved and happy. We’re relieved and happy. This is special and it fits him perfectly.

We have been waiting for this day since September. tuck took his GRE on the day before my dad died. We are literally breathing for the first time since September 21. This was the final hurdle we were waiting out. I don’t care if the afterglow only lasts tonight. It’s definitely on.

We will be marching in the March for Science this Saturday with a lot of pride.

There’s a lot to write about how executive functioning deficits — and our own preoccupation with my dad’s death, his estate, and the death last week of my friend Matthew, all contributed to us not watching as carefully as we could as Tuck made decisions about where he would apply, and that could have gone pretty badly for everybody. We caught it, and it didn’t. More on that at another time.

We already had milkshakes waiting for the kids when they came in from the playground, but of course Claudia was ready to one-up Tucker… she’d found a FIFTY dollar bill.


Congrats…. to TUCKER.




When you love someone with autism… but find yourself coming up short from those you were counting on to acknowledge and support your loved one… you can feel sad and angry. But you can also redirect.

And you build a company that employs people on the spectrum.

And your circle of support grows. And so does others’.

We are continuing to grow in every way! And a big part of that means job carving, and that is why I’ve linked to Ben’s very good blog post about it.





The autism spectrum, and where anyone is “on” it, has to do, it sometimes seems, with those people’s thresholds for input. Autistic people’s thresholds differ from those of non-autistic people in many cases: thresholds for pain, interest, consciousness, and more.

Tuck has a different threshold than the “average” person does for temperature. If he gets too warm, he stays too warm, even after he’s taken off a layer of outerwear. When we saw a YouTube video called “Why Don’t Autistic People Wear Coats?” we squawked in joy — we had no idea it was a thing. It’s a thing!

We learned early on in his time in the household that he was not the person who should be drawing a bath, or testing the shower temperature, for the kids. But that, I guess, is more of an example of his threshold for physical pain, which is high. In his first holiday season here, we were in the same room, and he was grating potatoes for Hanukkah latkes. He cut himself, managed to text Ben and let him know the bleeding was not stopping, and decided that he’d need the stiptic or chemical treatment and asked Ben to pick it up at the store and bring it home (and had possibly had even Superglued his finger closed in the meantime), but I never even saw him react. He has told me that when he says “Ouch!” it’s generally his reaction to being caught off guard visually by the thing he’s about to trip over, or the door swinging at him, more than it has to do with pain. “Ouch!” is not an expression of pain — it’s an expression of surprise at an object that is coming closer.

As with many Aspergians, Tuck’s threshold for maintaining interest in a topic of study or conversation at times seems inexhaustible. I feel I may have used this as an example in an earlier post, but once Béla got to sit with Tucker and go through all his Magic: The Gathering cards. This began as a tremendous treat, and ended with a drained and subdued Béla telling me that he’d had fun, but that he had “started to miss his family.” (We were all visible, two rooms away, but were unreachable, just beyond the crest of Tucker’s enthusiasm for his subject).

A few months ago Tuck cut off his beautiful long hair, and Claudia remarked that “now his bruises show more — and spots he picks at with his fingers.” We talked about reminding Tuck to use fidgets, and to not pick at skin (the effects of which are definitely more noticeable without the distraction of the long giant golden mane.) I tell Tucker not to pick a lot — and to switch to a fidget — but I often feel guilty about this. Am I supposed to feel guilty about letting him injure his body, or not letting him injure his body? Before he lived here, he was prone to staph infections because of the picking, and has said his socks were often blood-stained. Why do I still feel like I’m denying him some part of his autistic identity by asking him to switch from his lip to a fidget?

There are days where it is hard to face the reality that I will be suggesting this change, forever, and that he’ll never entirely internalize the “solution” of using a fidget instead of his skin. But if I’m reading or working on my laptop, I, like I presume many people, can’t always tolerate the sight of someone plucking in my peripheral vision, particularly knowing it might unwittingly be leading to injury. (Tuck has at times peeled at his thumb to the point where his iPhone would no longer recognize his print.)

What about his need — it’s a real need — to talk about science? In great detail? Hopefully, he will someday be employed in a way that gives him lots of people to talk to science about, but I have a feeling he will come home still wanting to talk more. With us. Because he loves us. And wants to share the thing that he loves most in the world with the people he loves most in the world. Beautiful, right? I agree.

Where is the tipping point where it’s okay to say, “I can’t take another minute of this and haven’t understood the last FORTY minutes”? Ben and I had tried, early on in his time here, to institute a checking system, not just for home but for out in the world. We had strategized with Tuck that if he was talking, and the person he was talking to responded with “uh-huh” three times in a row, that he should pause in his talking, and re-assess. Was the person he was talking to waiting for their turn to speak? Did they have a question? Had they used the pause as an opportunity to leave? We never got enough data to say whether this strategy works or not. Tuck’s hindered ability to track whether he has been talking for a minute or an hour means he can’t count “uh-huh’s” either.

Sometimes, I will test — just how bad is he at reading non-verbal cues? If he’s going on for a long time talking about something, what happens if I actually start to pantomime, beyond what could possibly be considered polite or even civil, boredom? If I stop saying even “uh-huh,” and just fail to look up at all, continuing to type on my computer. Sighing audibly. Or, looking him in the face, and shrugging.

There is a point where I can see that he can see, “something is wrong”. But it seems that his interpretation is “Amber is unhappy/in pain/ worried about something”, and he does not relate it directly to the last twenty minutes he has spent telling me about something to which I’ve had literally no positive response, nor even shown signs of comprehending.

Am I bad because I just can’t? I just can’t do a lot of things. I get overwhelmed by sensory stimulation easily. My kids certainly know that if they are dialing up the noise and the goofiness, and then the dogs start barking, or somebody knocks over a glass, they better start to dial it back themselves. Not out of fear of punishment — but to help me. They have seen too many times the exact straw that breaks the camel’s back, and pushes my irritation and fluster into a full-fledged migraine.


My dad was very, very into TV. He watched specific shows over and over again, whenever they were broadcast, whether he had seen them once or fifty times. He had set up a timer so that he could watch re-runs of NYPD Blue on every station they were being broadcast — I think the most he found was three times a day — even though he owned the entire series on DVD.

Often, my dad would say to Ben and me, “There was this line I loved on Seinfeld last night.” (He didn’t bother to pretend it was anything new to him, or ask if we were already familiar with it, or if he had already told it to us.) And he’d begin to give the setup for the line and then say, “No… wait. Well before that…” and would continue to backtrack, further and further, like some horrible Chutes and Ladders game, until he would finally apologize — “This is the only way I can tell it.”

“This is the only way I can tell it.” These are, if not the exact words, as close to them as anyone could possibly come, used by Tucker the day he came to our house to say goodbye before leaving for his freshman year at Georgetown University. All incoming students had been assigned a novel to read. Tuck sat at the kitchen table — having just received the afghan I had knitted him as his going-away present — and tried to tell me a little bit about the novel. But kept moving backward. And backward. Until he was essentially reading me the novel from memory. And at one point he stopped, and looked both agonized and apologetic, and said the very same thing — “This is the only way I can tell it.”

What do I do when the only way he can tell it is exactly the way I — or others — can’t take it in?


Earlier this fall we decided to have Béla evaluated for both Autism Spectrum Disorder and Ehlers-Danlos Syndrome. He has neither. We knew that they were sometimes seen together, and we have seen him do some pretty amazing things stretchyness-wise (enough to make me feel faint, but not enough to impress anybody at CHoP). His ability to describe how things are engineered, or to describe how manifolds are made, when these things are not even visible to observe, is pretty impressive. Cut any size of piece of cake or casserole out of any pan, and Béla will look at the remainder and tell you how many equal-sized pieces are left to the one you just took. And a few months ago, his total failure to understand a homework assignment about idiomatic speech — specifically hyperbole — had us perplexed and kind of amused. (Tucker: “If you had a stack of books that was so, so heavy that it was going to hurt to carry it, you might say…” Béla: “‘I’m not going to pick that up.'”)

Ben took him for evaluation, and he came home with a Rice Krispie treat, and no pamphlets or next steps.

I will never stop wondering what would have happened if Tuck had gotten earlier intervention.


It was interesting to me to learn about weighted blankets, and to order one custom-made for Tucker’s twenty-first birthday, after reading so much about how weighted blankets were “good for” autistic people and made them “feel better”. We all tried the blanket out when Tuck got it for his birthday. We all agreed it felt pretty good.

I was lugging it up to my own bedroom long before I started to see the corroborating articles about weighted blankets being good for people with PTSD. Or generalized anxiety disorder. And what do you know — within less then two years, I was seeing articles that just talked about how weighted blankets felt good. For, you know, people.

Again — thresholds. I can’t say I know when Tuck chooses to use his weighted blanket or why. But if I’m lying down and not feeling well, it is Tuck who will suggest, “Do you want the weighted blanket?” and I’ll think, OH MY GOD YES I DO. It is Tucker who understands that I have hit a somatic threshold before I understand that I have — or, before I have the awareness that it matters.

This is a problem with neurotypicals. We forge ahead regardless of what our senses are telling us.


One night a few months ago, I was walking to bed, spooky novel in hand, when Tuck stopped me and told me, in hour-by-hour detail, his entire high school schedule. I still don’t know why. I smiled and nodded; I moved from room to room; I checked my phone. When he would pause, looking for responses, I would either say “Uh huh” or “Well, that was a long time ago, huh?”

Eventually, it petered out, and he then asked me if I wanted to look at plans for a mask he was designing.

I said, “Only if they involve not much talking, because you just told me your whole high school schedule, for a really long time, and I’m pretty much done listening for now.”

He apologized.

I told him he didn’t need to be sorry. He doesn’t. I had not stopped him. Should I have stopped him? There are times when I do. There are certainly times when I say, “Okay, this seems like it’s going into much greater detail than I can process right now.” Or, “Look, I had thought you were just making a quick observation, but as you see, I’m writing, and I need you to wait to tell me this later.” It can be very frustrating — what is a clearer signal of business than someone typing on a laptop? — but Tucker does not always say “Excuse me,” or “Do you have a minute?” Maybe 50% of the time now, he will say “When you have a moment, can we talk about something?” But the rest of the time, he just forges ahead, knocking the next words I wanted to type right out of my skull.

I cannot imagine what is going through his head in those moments, where he is talking and talking, and pausing, specifically, for feedback, and getting very little. What does that dearth of enthusiasm look like to him? If I ask him, he can’t tell me. He knows what it looks like when I am enthusiastic. But when I’m not, whether he can tell or not, he cannot switch gears, or  ask “Is this not interesting, or too detailed, or too scientific?” There have, in fact, been times where he’s said, “Can I tell you about this one problem on the test?” and I’ve answered, “I’m not going to understand it, so I can’t really listen that well,” and he’ll say, “Can I tell you anyway?”

Obviously the hope is that Tuck will spend his working life surrounded by people who can have the kinds of conversations he wants to have. And that in doing so, will not always have to bring them home and tell them again just because they are still going through his head. It is beyond the threshold of what his relationships here will be able to tolerate, and what I presume a number of other social relationships would be able to tolerate. But in other cases, some of them current, that enthusiasm for the subjects he loves will be the glue that holds his social and professional relationships together.

We make allowances for what Tucker can handle in sensory situations, social situations — and think it matters that he take other people’s limitations into account as well.

And let’s not pretend for a moment that we are talking only about Tucker’s limitations. My training in NT communication has not served me well in communication with other people on the spectrum, much less Tuck himself. A regular issue at home: no matter how many times I say, “I could really go for nachos,” “Don’t nachos sound good right now?” “I’m going to die if I can’t get nachos,” “Wouldn’t YOU love nachos?” Tucker will only eventually say, “Look — are you asking me to call and order nachos? Because I honestly don’t know.”

And it’s true. He honestly doesn’t know. He doesn’t have any reason to know. For ninety percent of the times he’s interpreted my vague suggestion as a call to action and actually ordered the nachos, I’ve chided him for so swiftly abandoning healthy eating goals.

I’ve lived with Tucker as a family member for going on four years now. We have a lot of guilt-free, laughter-filled conversations about what we can and can’t tolerate about how the other communicates. This week, in my Facebook feed, there were a number of articles reacting to a recent study about social reciprocity between autistic people and neurotypical people and frankly, the NTs are showing a low threshold for patience, trying to take an interest in what isn’t already an interest to them, and judgement of whether or not a person will make a satisfactory “friend”. Neurotypical Peers are Less Willing To Interact with Those with Autism based on Thin Slice Judgments from (Nature magazine) is a very scary and heartbreaking title to me. It exists.

It’s become an actual meme, folks.


Tucker’s threshold for forgiveness — and resilience — also is much more generous in quality and quantity than my own. I am lucky that he puts up with me, particularly in years of his life when he has made it demonstrably clear that there are plenty of behaviors and people that he will not put up with.

And I still want a world where people do better than I am capable of doing. I’m not proud of this. It’s not just for him. It’s to take the heat off of me as well. And, often, it’s to ensure that I have the spoons left for the kids, for Ben, for myself, and for Tucker the next day.

I want to listen. I want to want to listen. But the only thing I can really count on myself for is to try to listen.