GRADUATE/STUDENT

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.

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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.

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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.

 

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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.

GRADUATE/STUDENT

WE INTERRUPT THE METICULOUS POSTMORTEMS OF OUR CHALLENGING PASTS WITH NEWS OF INCREDIBLY BRIGHT FUTURES

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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.

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Congrats…. to TUCKER.

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WE INTERRUPT THE METICULOUS POSTMORTEMS OF OUR CHALLENGING PASTS WITH NEWS OF INCREDIBLY BRIGHT FUTURES

ACROSS THE POND

We have certainly tried, with at least every few posts, to have this site be about more than rare-steak, bloody-juicy stories of family dysfunction from our haunted pasts. We’ve hoped to make use creatively of the challenging pieces of magnetic poetry pieces we’ve been given (autism, dementia, PTSD, estrangement, death) and get them linked up seamlessly with the ones we love (parades, puppets, props, Tarot, “bedroom culture”, masks, and things that light up and glow).

We have spent two years groping, slothlike, towards data-gathering on the topic of processional arts and its participants on the autism spectrum. Sounds academic, put that way, but really, it was just that Tucker had had big shutdown/small meltdown at both of his first Krampuslauf Philadelphia/Parade of Spirits nights, in 2013 and 2014, and when we had figured out why, we started to think more about the people we didn’t know yet, and what their experiences were. Parade of Spirits is secular and “inclusive” — but it can only be inclusive of the people who show up for it. Right?

We thought maybe we could try to do even better.

We made a SurveyMonkey survey, trying to get data from other people on the spectrum, to find out more about how they felt about processions and parades, and whether making things that were used to make the parade beautiful, or being at the parade physically, were of similar value to them. Or at all equitable in attainability.

In 2015, we had a very polite and meaningless meeting with folks from the Autism Task Force at City Hall (Philadelphia is the first city in America to have an autism task force at the municipal level), who had seemed “receptive” to our admittedly loose plans to try to get in touch with people in the local autism community about interests and challenges in processional arts, but, when asked, the folks at City Hall in Philly would not share our survey on social media, since it did not have anything to do with any projects they themselves were working on.

Not even a little cut and paste? Okay then, Task Force. We continued to find ways to direct people to the survey when we could, and although the sample was not large, the responses had marked similarities. We continued to have Krampuslauf Philadelphia, which, by 2016, had officially been re-named Parade of Spirits, Liberty Lands, and we continued to talk about sensory issues and processional arts where and when we could.

And then, in the tiled-sliding-puzzle world of Facebook Groups, where you can suddenly find yourself next to anybody, I found myself in conversing with an autistic woman in Scotland. I told her about Parade of Spirits. She told me about herself. “My ‘special interest’ is what is popularly known as the Green Man – foliate head,” she told me on Facebook Messenger. “I hold both a Scottish Gazeteer and a bibliography on the subject, acting as volunteer curator for a private research collection on the subject.” But, when it came to attending events where the Green Man might be portrayed “live” — such as Edinburgh’s amazing Beltane Fire Festival — there were logistical bottlenecks. “If it was just the people +sensory , then because it’s my special interest I’d manage and take the hit of being in bed for a fortnight afterwards! But there is an AUDIENCE! and a large group of non-involved persons would be….. urgh!”

I was having a conversation I had wanted to have for years. I had liked the idea of it being with someone in Philadelphia, because we could have worked together on something in Philadelphia, but it hadn’t happened that way, and this was just as interesting.

Within a few months, I had found another woman to talk to about the same subject. She was also in Scotland.

We have had some skill-sharing ties to the Beltane Fire Festival folks in Edinburgh for years, and in fact at Liberty Lands have our own willow “garden” (one of twenty plants made it, but it’s prolific), named after our buddy Zander who set us up from across the globe, to learn about the use of willow withies in creating lanterns and puppets. I joked to Ben and Tucker that if we were going to hit dead ends in Philly, looking to be part of a conversation about providing greater participation to people on the spectrum who liked and wanted to have more of a hand in processional arts, that I’d be happy to just go to Scotland to have the conversation.

So close to right.

 

Shortly after Parade of Spirits this year, I saw that a conference called “Winter Festivals and Traditions” was asking for short abstracts from prospective presenters. It was easier for me to write the abstract than to not write it, and so I submitted it within hours of seeing it.

I did not think about getting chosen to present at the conference, mostly because I had other things to think about. So I was pretty surprised when I was chosen. The conference was at Oxford University. It was a little more than a month away, I explained to Ben, as contractors knocked on the door, setting off yelping dogs, and under-dressed children hurling themselves down the stairs as they do when anyone enters the house.

“Want to go to England?” we asked them, while showing the friendly pair of Ukranian contractors where we wanted to knock out walls to extend Béla’s bedroom. Béla has the smallest bedroom in the house, and is the only person with a full drum kit in their room, and  you literally cannot step into Béla’s room at night to check on his sleeping without hitting a crash cymbal.

In my abstract, I did not just write about my passion for making processional arts more accessible for people on the autism spectrum. But it’s in there. I enjoy public speaking, so I’m not worrying about my fifteen minutes, but very excited to find out about what else is going to be presented and who we are going to meet. The whole family is going. We are only going for a few days and not going to travel far from Oxford — it seems there is plenty to do there (I understand that it’s a destination for Harry Potter fans, which none of us is). We are thinking of going to Stonehenge (and if I know Tucker, he will want to be there at sunrise. But I think it is equally important that the kids see This Is Spinal Tap in preparation.)

I’m excited. I believe my big ol’ Leon Russell tattoo should be well-healed by then and I think I will get a skirt to show it off. I don’t buy clothes much, so if I buy an outfit for this conference it’s going to do double duty as The Thing I Wear To Tucker’s Graduation. (The stockings I wore at his high school commencement are still lying in my top drawer, waiting for “one more wear” before I wash them.) And speaking of Tucker’s graduation, he paid for his final term today. His degree is paid for. No loan to take out this year.  It is now all just right around the corner.

As we occasionally get to say here, sometimes things are just fine.

 

ACROSS THE POND

FatCoffee GROWS WITH US. WE GROW WITH IT.

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.

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FatCoffee GROWS WITH US. WE GROW WITH IT.

THRESHOLDS

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.

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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.

THRESHOLDS