Social Insecurity

I am writing this to express to something that I learned during 2016, which is demonstrative of the failures in oversight that were part of my childhood, and how a few simple actions might have made a significant impact on a lot of people if they had been carried out in 2008 instead. While there are many open questions about what happened in the past, I am not looking for, nor open to, answers to those questions. Writing this has been beneficial to me, and I hope that it may further benefit others in the autism-supportive community that I have gained in the last few years.

 

In June of 2016, I enacted the series of steps needed to meet with the local Social Security Administration office about the survivor benefits I might have been eligible for at the time of my mother Andrea’s death. Amber and Ben had occasionally asked me since I was 17 about whether my biological siblings and I had received survivor benefits. I knew nothing at all about survivor benefits and had initially been resistant to pressing further into it.

On the one hand, I did not have a clear understanding of what the benefits were and what the requirements for my mother would have been to receive them. I also had a fear about what it would mean if these benefits had been received, but without my knowledge.

I became open to exploring this issue during 2016. I had already had to work with my school’s financial aid office so that I no longer would be dependent on my father’s tax returns, which had been repeatedly difficult to acquire, and to file my FAFSA early in January. That January I was finally freed from the mounting anxiety and disappointment around my father’s abilities, and with clarity and an honest appraisal of things I felt more prepared to handle what might be an uncomfortable truth about the Social Security benefits.

 

The first time Amber and I went into the SSA office, we learned that “no one had ever applied for benefits on [my mother’s] record”. There was a small sense of relief knowing that the survivor benefits had not been received and spent without my knowledge or input. However, I was also told that “there are no retroactive survivor benefits”, though I could apply for disability benefits on account of being autistic.

This response – that “no one has ever applied for benefits on this account” — seemed to indicate that there must be something that had been available, even if it was no longer available. Following her death, Andrea’s husband had written that an SSA agent had told my mother (later learned to have taken place by phone) that she hadn’t worked enough in the years prior to her illness for us to receive survivor benefits; he made sure to indicate how friends could make up for this “big part of [his] childcare fund” by donating money or time.

We now knew that the statement that “she didn’t work enough in her lifetime to have the government do anything for the kids” was discordant with the facts we were given by the SSA directly – that no one had ever applied for benefits on the account at all. We decided to press further on, returning with legal counsel.

We scheduled an appointment for an ‘application interview’ at which I went through the steps of applying for benefits through my mother’s account, as might have been done at the time of her death when I was fourteen, and four of my five siblings were still minors eligible for benefits. Near the end of the interview, I asked the Social Security agent if she could specifically tell me the amount that we would have qualified for had the benefits been applied for in 2008 when Andrea died. Where I had pictured the low number being on the order of $25 – $75 per month, I was not prepared to hear the actual amount: $450.00 per month, across all eligible children. At $90 support/child per month, this would have amounted to more than $30,000.00 in benefit before the last of us became an adult.

We spent years before her death with limited resources and on food stamps, and living in abject poverty after. I got clothing for school initially as a form of charity, but when I gained weight I had to buy clothes from the thrift store; I still didn’t have enough and spent a lot of time wishing no one would notice when I wore the same things over. I walked in shoes until the tread was gone and holes were letting rocks and water in, so that I wouldn’t have to burden my father with the charge of paying for replacement shoes. I was completely reliant on the generosity of others for things like textbooks, where the costs at times were easily $400. I was poor, and felt it. And every relationship I had in those years was colored by the fact that I was known to have little.

And while $450 per month of support wouldn’t have changed everything, it would have changed a lot. It would have kept the water or electric from being turned off. Or kept our internet on at times we had a lot of schoolwork to do. It would have meant that I had the security of asking to replace shoes, even if infrequently. It would have meant that I at least had something.

We were led to believe that we were eligible for nothing, and it was left at that. Did anyone question this? Did anyone suggest trying to fight the SSA over such a decision? It would seem not; that is, not until Amber, Ben and I sought answers. It is not unlike how my mother handled me being autistic – Andrea had told me she thought I had Asperger’s syndrome, and it was presented as “being socially awkward” and “having above average intelligence”. I received no formal diagnosis, no clinical intervention, and no further information. It was not until I was diagnosed at 19 that I had the opportunity to experience life with an actual autistic identity. Amber and Ben saw the same things everyone else had seen for years, and chose instead to follow-up, to ask questions, to pursue it like it mattered – exactly what Andrea and everyone else hadn’t with autism or the survivor benefits.

 

It is hard to picture my mother finding out that she had been denied a significant amount of money meant to cover the raising of her children after her death, and never mention it. She was loud & combative, and would over-zealously “defend” her children’s rights to a fault. I cannot wrap my head around why this sleight would have gone unmentioned until after her death. It is out of character for her to not have not made a big deal out of this, or to at least have found someone else to do so if she was too sick to make a fuss on her own.

Another relative confirmed that my mother claimed to have been told by the SSA that she was ineligible, in a phone call. She was sick, and even making phone calls was becoming increasingly more difficult to do alone. Calling the SSA takes over an hour on a good day to get to the point where you can ask an SSA employee a question. So I can only assume that someone helped her contact the SSA, maybe she even “pulled her cancer card” (this is how I heard her refer to taking advantage of being sick) in order to be provided more information than they typically would over the phone. My own success in 2 hours on the phone with the SSA was limited entirely to learning the procedure by which I could begin a conversation with an SSA agent in person and what documentation would be necessary, while no consideration was given to eligibility until I had an onsite appointment.

Throughout my mother’s whole illness, the house almost always was filled with friends, family, and occasionally professionals. Between that, and my mother’s propensity for confrontation, I do not understand why she would have accepted that we were being denied death benefits owed to us. Given that the Social Security Administration reported the fact that we would have been eligible at that time to receive a total of $450 per month, how was any of this misconstrued into a denial of death benefits in the first place, and why would she have not gotten any opinions from anyone else about it.

Regardless, no one did take another step until we went in 2016. And if anyone had taken those 90 minutes to do so in 2008, we would have been ensured the death benefits owed to us – to myself and ALL of my siblings.

 

I know that people’s lives go on after someone dies, but this, in the end, required very little work to find out, except a lot of emotional work personally to get there, and it would have had a significant financial impact if the time had been taken to do this 8 year ago instead.

 

We were poor before she died. And even with $450 per month we still would have been poor. It would have meant that groceries stayed in the fridge a little longer, and detergent in the laundry room. Maybe health insurance could be an option, a physical or a dental appointment – I had none for years.

The financial state of my upbringing tested every aspect of our basic needs – food, water, shelter, clothing, and security – and having that benefit from Social Security could not have fixed all of the problems. What it could have done though is allowed the 15 year old me to have a little less shame about what we had, and what we lacked, and to have a little more self-respect. This to me, is why it is worse to have found out we were eligible for $450 per month, rather than $25 or $50. As numerous as the helping hands for my mother were, this thing still managed to slip through so many people’s fingers, and what might have cost some time, I paid in dignity instead.

Social Insecurity

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.

noonewilllisten

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

ROCK AUT! ONE WEEK DAY CAMP AT PHILADELPHIA SCHOOL OF ROCK, AUGUST 2017

Super excited to announce this. It was a dream; it’s coming true.

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SCHOOL OF ROCK PHILADELPHIA: AUGUST 7-11
ROCK AUT: School of Rock Summer Camp for Kids on the Autism Spectrum

421 N. 7th Street, Philadelphia, Pennsylvania 19123

Like all SoR summer camps, this one requires an interest and/or experience in vocals, guitar, drums, bass, or keys. Campers will receive coaching, instruction, and support from staff members who will assist campers with songs, arrangements, rehearsals, and performance. The campers will perform as a full band onstage at the end of each session, showcasing the lessons of the week long camp for family, and friends.

This week also includes one day of programming with John Elder Robison, author of the New York Times best seller about Asperger’s Syndrome, “Look Me In The Eye”, and creator of the first special effects guitars made for the band KISS. John will be with campers talking about autistic pride, challenges, and his time in the rock industry. Please e mail jmiller@schoolofrock.com for details about this camp!

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We’re proud, we’re grateful, and it’s going to rock.

ROCK AUT! ONE WEEK DAY CAMP AT PHILADELPHIA SCHOOL OF ROCK, AUGUST 2017

THE TIME I THOUGHT I COULD HANDLE IT

When Ben went to my dad’s house for the first time after his death, he agreed; it was nowhere near the site of barely managed piles of magazines, newspapers and books that we had known for years. It had been cleared of the clutter of every day life.

But once it became “mine” — in the space bubble that an “estate” holds for its administrator — the house didn’t sound so empty.

For years, it had been agreed that it would be unhealthy for me to enter. For years, Tucker had insisted that he wanted to get in to see the house when my father was dead. That would have been practical, as Ben and Tuck together could have certainly gotten some work done in getting things out and getting the house ready for sale.

But it didn’t work that way. Tuck had finals, and graduate school applications to complete. Ben spent a lot of time going out to the house alone, doing a lot of work.

The first few weeks after my father’s death gave me a spacey sort of relief, and nebulous concept that we now had a house to sell, which would turn into money, which would turn into home improvements for our family. But about three weeks after my father’s death, I suddenly realized he was dead. The bubble of relief deflated. I was overwhelmed by how much of his physical stuff was infiltrating my present.

Since so much of what I have to do, particularly in the time of year leading up to Parade of Spirits, Liberty Lands, does not require leaving the house, I didn’t think that was such a big deal that I had, aside from weekends, stopped leaving it. But it was definitely something the kids were keeping track of. When I was not the person who picked them up in the schoolyard, or was still in pajamas or seated on the couch when they came in, this was noticed. They wanted to know if I had “gotten up yet”. A little demoralizing, particularly on days when making it to the first floor and working there on my own had been a pretty big deal. (And on days when I had spent the hours they were gone making them a set of The Lion in Winter-themed hand puppets for Christmas.)

Ben and our friend Chris went to take a swipe at clearing out my dad’s house for a day. When the day was over, it was clear that there were far more visits to the house to schedule than we had planned for. Also on that day, Béla had had a meltdown at school, over a broken pencil. While angry that someone had intentionally broken his pencil, he also worried that the incident would be “another thing to make Mommy sad.” Mommy was becoming sadder and sadder, and there was no hiding it.

It had been a month and a half since my father’s death, and what I perceived would have been the “mourning period” seemed now to be over — and I felt far worse than I had when he died.

I had often over the years tried to picture what being told my dad was finally dead would be like. I had never pictured being alone in the bathroom and receiving the information by text, which is what happened. Although I had been anxious and impatient about the specifics of the cremation, in hindsight — pretty much immediate hindsight — having Ben tell me “it should happen between five and seven tonight,” and then have everyone leave the house for various classes, leaving me home alone during those hours, was not a great plan. At least, not if the goal had been to not create another really bad memory. It was a miserable couple of hours.

Our next door neighbor’s sister died of a brain tumor a few weeks after my dad died. For about a week, I took in plants and flowers as they were delivered to their home while they were at work. I was surprised to see this — is this what happened when someone died? I did not get cards or flowers, but I certainly wouldn’t have liked, or kept them, and it’s easy to presume that everyone knew that.

Our friends next door were grieving for someone they loved, whose death seemed truly unfair, and was a tragedy for them. That, it seemed to me, was what all the flowers and plants were for; not the death itself. I had “grief”, but it was not what they were experiencing.

I did not see friends. I could not commit to getting dressed to go to breakfast, or have anyone visit. I knew that I was not okay. It is tricky stuff, being truthful with your friends and saying “I feel really alone and like this passage has not been adequately acknowledged,” but also saying “I don’t think anybody else should have done anything different.” It didn’t leave me, or anyone who cared about me, with very many alternatives.

Tucker’s maternal grandmother was, as she always is, ready to do anything for us, but I couldn’t figure out what that was. I talked to her on the phone in the 24 hour period in which we were waiting for my dad to die, and I said, “I don’t even know what it is I’m supposed to want when you say you’re ‘here for me’.” I remembered that as a child, I would find an insect, maybe a caterpillar, and continually put a stick or leaf in its path, hoping it would interact with it in some way. And the insect would either just stop entirely, or turn and go another direction, no matter how many times I interrupted it. And that is what I had felt like. An insect, being sporadically offered a monolith, and unable to do anything except sit and stare in front of it, or plod around it.

But I realized that I had been picturing something — maybe like a sick day or two –when Ben stayed home from work and Tuck stayed home from school, and maybe we just hung out at home and went for a walk and talked about things. It hadn’t happened, and I think if it had, it might have been the stitch in time that saved nine — or, in my case,  one very bad week of staying mostly in a food-stained bed and crying and dry-swallowing anxiety and anticonvulsive meds six weeks after my father’s death.

I barely functioned through Halloween and its attendant activities. I have always wrung every moment and scent out of October. This October, there were still mosquitoes and flies around. It was hot, and the air conditioning was still on. I barely knew it was happening. I didn’t care.

I thought it was good for my kids to get out to school every day, to get away from my gloom. It wasn’t. This was the year — and we saw signs of it as early as September — that they looked at their school and saw NO FUTURE scrawled on its walls. Claudia was coming home every day, getting out the punching bag and gloves, and pounding away for an hour. Béla was making a lot of vague trips during the school day, to the nurses’ office.

We had always known the kids’ school to be full of limitations —  but we had been happy with their kindergarten and first-grade years, and had supported the school in all the ways we could. We knew the school was staffed by teachers, some of whom had confided in me that they thought about quitting at least once a week, and who sat in their cars and cried at the end of the day more often than that. We never expected them to stay there through eighth grade; I’m not sure we even expected them to stay through fourth.

But this fall, Claudia was on the snippy end of too many teacher’s Bad Days. And she took them to task for it. She pointed out their inconsistencies and their outright failures, and reasonable counterarguments failed to appear, and it was pretty unimpressive.

And it wasn’t just herself Claudia was worried about. It was the kids who had one uniform and wore it every day. It was the kids who were hungry, or sick very often. Both Claude and Béla were depressed by what they saw, and how little was being done to create any sense of equality, or even privacy, for students in situations less comfortable their own. Tucker and I had been present in the hallway at the school while one teacher talked loudly and derisively about the learning disabilities of one of her own students, with so many personal details, and such personal disgust, that we left, even though it was this teacher we had been waiting to speak to.

Pretty soon, it was the exception rather than the rule if the kids made it through the day without a phone call having to transpire. The school was worried that Claudia in particular had “lost respect” for some of her teachers. We would have been worried if she hadn’t.

The writing really was on the wall. Ben contacted the district, I wrote the kids’ educational objectives, and we prepared to homeschool. We went from feeling continually defensive and angry, to feeling giddy and excited. Writing the kids’ objectives was like building a gingerbread house, and talking with Ben and Tuck about all the things we could finally do — and the time we would have to do them — was a big distraction, and a big deal.

On the day we went to to finalize the last affadavit, realized I had left my ID at home just as we’d gotten to the office. A stupid oversight at a time when Ben could not really afford the extra time; his phone was going off nonstop, as he’d left a team at the kitchen, working.

We raced home and back to the notary, just in time to see my favorite high school teacher arriving at the same door.

“Amber,” she said, “Just who I need.”

I’d not had a conversation with this woman in thirty years. I knew she lived nearby; we had seen each other from a distance, and I believe she had seen the children with me in line once at Whole Foods. She wanted to know why we were at the notary, and we told her.

“They’ll never have a better teacher,” she said.

And she spent a good twenty-five minutes arguing with the notary as she got Ben and I to witness her newest version of her will. She was truly the only teacher I had ever had whom I had loved and respected. And there she was. As beautiful as Deborah Harry. Telling me, as it was notarized, that I was the right person to educate my children.

Another gift from the universe.

When we told the kids the homeschooling paperwork had been approved, we expected they’d want to go to school up until holiday break. But the next day, Claudia had witnessed a heartbreaking interaction involving the kids who needed the free meal plan at school (whom she should not have been able to identify from the kids who didn’t need it, and therein lay quite a bit of the problem). “Can I say ‘damn’?” Claudia asked, after telling Tuck and me this story when she got home. I said yes.

“I’m done with that damn place,” she said.

The next day, December first, I was homeschooling.

And planning for Parade of Spirits, Liberty Lands. And Christmas. But I think homeschooling — the terror of being dropped like a lobster into the pot, and the immediate freedom, and deluge of ideas it gave us — pulled me out of my grief.

So did the death of Leon Russell. From the day after my dad died — when the news was announced that Monty Python’s Terry Jones had been diagnosed with dementia — I began joking that my dad was taking all his favorite people with him. (Ron Glass, and Father Mulcahy, right up until the last day of 2016.) But losing Leon Russell was the biggest loss to me. I loved Leon. For as long as I could remember, my father had described to me a televised live performance by Leon Russell where, on the stage, “women were making pies”. He talked about this literally up until the end of our relationship, lamenting that there was no way to see it (none that he could figure out, anyway) and on the day of Leon’s death I posted about this elusive footage on Facebook.

I told Ben I expected someone to find it for me by the end of the day. Even though I had looked on my own in the past and failed, I was sure. And I was right.

The guy who found this concert — which we have watched in its entirety a number of times — is someone I only knew from a South Philly Facebook group. I had liked that he had at one time had a profile photo of a painting of Terry Jones from Monty Python, playing the piano in the nude. When my dad died, this person coached me through some of the earliest figuring-out of my father’s books and ephemera. He also told me about how his career as an appraiser had begun by handling a family estate. He told me to think of this part as “a marathon and not a sprint,” and while I wasn’t happy about it, I knew he was right.

The Homewood Sessions with Leon Russell — with gorgeous Emily making her pie crust and dancing with her rolling pin — became the first real celebration of loss that I could experience with the children.

If this came up in a previous post, I’ll say it again anyway: Tear Soup is about the best book on grief you can share with your kids. We slipped it to the next door neighbors during their grieving as well. I was able to do that only when I did not need the book, or need the children to look at the book, or need Tucker and Ben to sit and look with the children at the book, every day.

That time passed.

It seemed like my dad’s belongings, once seeming so meager and aesthetic, were multiplying as soon as our backs were turned. Ben found a silver coin collection, and took it to a dealer and sold it. The dollar amount was the exact number of my father’s street address.

Two days after dispensing with the coin collection,  Joey, the next-door neighbor who had been reading Tear Soup and spackling and painting my dad’s house to prepare it for sale, called Ben. He’d just found a coin collection. This one, much older than my dad’s collection. Because it was his dad’s collection.

How this had been overlooked, by both Ben and Chris, who had really been through the house top to bottom, we still aren’t sure. We were living in the Groundhog Day of estate dispersement.

My friend Jana in Tucson, Arizona, who was planning on coming out for Parade of Spirits, asked me to make some aesthetic choices with her on the headpiece/puppet she was making: Leon Russell as the Frost King. She came that week, along with other friends, and we got to help make Leon, while having the Homewood Sessions concert on in the other room. Leon the Frost King was at Parade of Spirits, and  Jana and her husband left him on our stoop at about midnight that night.

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When Joey from next door returned Tear Soup, the out-of-the-way shelf I’d like to have put it on was blocked by our enormous, beautiful Christmas tree, but I put it out of the way all the same, letting the children know I didn’t think I’d need to look at it again for awhile.

The house is still not on the market, but it is closer. Many of the things are gone. No new things are being added. I’ve paid, I believe, both the estate and property taxes. Ben continues to make trips to the house, and although he began by running Craigslist ads, much of what we needed to get rid of — a pneumatic recliner, sports jackets — were taken as “payment” by friends who have helped with the cleanout/fixup process.

Although Tuck had begun inheriting the obvious — the puzzle cubes, the wooden boxes, the odd sticks — he also ended up with many new pairs of shoes (I would not have guessed he and my dad had the same sized feet), a hat with a Celtic knot pattern in it that I knitted my father in 2004 (when Tucker was ten), and, unless someone changes their mind, his bed (which apparently has a brand new adjustable, massaging, heated, memory foam mattress. It’s a bit hard to pass up).

Tucker remains — from the day I found out about my dad’s dementia diagnosis, and continues to be — my closest friend when it comes to talking about the loss of a parent that was arguably better lost than continued alongside. He is the person to whom I can express my lack of sadness, but my rage at my lack of closure. Neither of us expect closure, and neither of us want our parent back. I expect there’s something quite different about it happening to a fourteen year-old than there is for a forty-six year old, but when it comes down to the quiet talking on the couch, no, maybe not so much different.

But as he has watched Ben and his father dot every i and cross every t in relation to my dad’s estate — for both me and my sister —  Tuck has been seeing me get much more than he himself got when his mother died.

Still, a paper maché and wool Leon Russell looks out of our front window grandly, and my children say “Let me try it,” “Let me figure it out,” “Let me experiment with it,” more than I ever thought they would, and no, homeschooling them does not mean being with them “all the time” and it certainly doesn’t mean being sick of them. I didn’t get what I needed when my dad died, but I didn’t get what I needed when I was a kid who hated school, either. I’ve given my kids what they need, and I know how to help someone else through a complex loss now, too. Things are changing; I am positive that I am closer to living my most authentic life, the life I was meant to live because I am so fucking great at every element that goes into it, than I ever have been before.

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THE TIME I THOUGHT I COULD HANDLE IT