worlds colliding

I often lament (to myself, in my head) that my two worlds are so separated. There’s my home world where my identity is firmly planted as Sister. Where I’m constantly engaging with a community of people who know Benjamin and effortlessly “get it.” Technically, I suppose, this could include the whole community of people who love and work with people with developmental disabilities or have developmental disabilities in my city. A community that understands and values a different kind of experiencing the world as much as I do. I don’t have to think about it.

Which is maybe why when I’m at school I forget that these kinds of differences are not implicitly understood, and I do not have a community that effortlessly “gets it” at my back all day. I’ve often grappled with how to describe Benjamin to new people, and at school, everyone is new people. Very few of my school friends have met Benjamin or are well-acquainted with him via my storytelling. I’m very grateful for those that are because I can tell them what’s going on in my/our lives and, to an extent, they’ll understand. I can tell them things like “my brother’s friend just got a diagnosis at 20 years old” and they’ll know there are so many things I want to say about this and I don’t know where to start. I can say “my bro asked a girl to prom with a balloon this morning” and they’ll know instinctively that I’ll want him to wear a bowtie. No inadequate explanation needed.

I presented my senior thesis last week and I suppose this was an attempt to bridge the gap. The gap between The World That Gets It and The World That Has No Idea I Have A Brother. I’ve been working on it for more than a year but I never really explicitly thought of it this way. It was a personal project, in which I fully accepted the self-involvement of the process, because it was just me, reading and writing for a year. I read all I could find on siblings of children with developmental disabilities. For myself. And a degree requirement.

But last week I presented it and was surprised by how outside of myself it became. I mean, it was a presentation, so I really shouldn’t have been stunned by this, but I wasn’t expecting how interested my friends and classmates and professors were. I was surprised that this personal project ultimately could teach others. I know, seems like an obvious purpose of doing it, but I had worked on it solo for so long that it was really just a project for myself. But suddenly I was explaining the sibling experience to people that had no idea of this deeply influential side of my life. I was the expert, very far away from the effortless community of people who “get it.” I was helping other people get it a little better, and even discovering people who do get it but didn’t think there was anyone else around who got it too.

I know, in retrospect, this all seems pretty obvious. Of course you would do a senior thesis on positive outcomes in siblings of children with developmental disabilities because it is something you know and believe and can share with others. But I was genuinely surprised that people were interested, and proud of myself that I am getting better at expressing this side of my life, whether it’s in academic jargon and a blazer or in run-on sentences on this blog or to new friends, imperfectly.

writing things just not here

I'm still 884 miles and 16(!) days away from Benjamin, but I'm writing about him and my life with him so much (like 50 pages much) in two very different ways. Neither of which are on this blog (obvs) but both of which are proving fruitful and interesting projects, especially because of how very very different they are. The first I've mentioned before (my comps) and it's very scientific and dry science writing but it appeals to the logical clarity-seeking list-loving part of me.

The second is for my class on memoir writing. I'm intertwining an Alaska camper story (this one) with Benjamin vignettes, and I get to be creative and make up words and introduce the reader to the worlds of Alaska, autism, and Benjamin by informing without explaining (this is hard). It's scary and liberating because my peers critique my writing about intimate moments of my brother beating himself. But I'm working through my anxiety about that, and I'm loving the juxtaposition of writing about being a sibling in a very straightforward, this-is-what-the-research-says way and a very creative, this-is-my-life-in-metaphors way. Basically, these days I'm loving writing. Here are some excerpts from the memoir:

"Girdwood was a ski town that slumbered in the summer and had been rebuilt after the 1964 earthquake. Besides the towering Alyeska Ski Resort, complete with aerial tram to the Seven Glaciers Restaurant atop a mountain (naturally), it consisted of a post office, a coffee shop, a thrift shop, and the #1 Laundromat in America. The foliage was deep green prehistoric ferns and towering dripping pines and everywhere bright purple fireweed. Clouds hung low and stretched out thin, like spools of fuzzy wet yarn unwinding, over a haphazard lattice of gravel roads lined with ski homes."

"I started walking Benjamin home from school when I was in 3rd grade and he was in kindergarten. When he graduated from the Anchor Center for Blind Children our mom fought hard to get him into a typical kindergarten classroom at our neighborhood school. As I had been making my own lunches since 1st grade and we lived only four blocks away, each day I would wheel him home, bumping along to the dissonant rhythm of uneven sidewalks. If he was in a good mood, the bumpy ride would make him giggle. If he giggled, I would speed up and aim for the big cracks and he would lurch against the wheelchair straps and this was hysterical. In 5th grade the city finally put in curb cuts, and from these we could gather enough speed for me to hop on the back frame and coast into the street."


9 AM on a Monday

My mom is really into Instagram these days, so that's where she announced the verdict: "The court approved us as Benjamin's guardians...he's thrilled!" followed by "I'm so proud--he stuck it to the man--refused to rise!" 

It's official; Benjamin's parents are still his parents. They will still get to sign field trip release forms for him and decide who he gets to sue (this is legal guardianship right?) The saga of Benjamin Turns 18 Now What is mostly settled....until he gets drafted I suppose. Or we start another family debate about his right to vote. Or the rest of his life happens.

“Growing Up: Benjamin Style” belongs on TLC. I’m going to pitch it. It might get a little monotonous but that's the point: growing up is such a non-event for Benj, and it was the hugest deal for me. It still is. I wrote a very angsty essay my senior year of high school that compared driving cross-country to college to slowly falling off a cliff, and it only gets more dramatic and poorly written from there. For Benjamin's typical peers--in their fall semester of high school senior year--everything. is. changing. If they're lucky, they're flabbergasted by a world of possibilities and flipping out about it. I was.

The month I turned 18 I graduated from high school wearing a yellow plastic barrette with my graduation cap. And immediately after the ceremony I dragged my friends to my elementary school playground so I could melodramatically throw it on the ground. To symbolize the end of my childhood. I can’t make this stuff up.

The month Benjamin turned 18 we threw a party to mock the irrelevance of our country’s arbitrary reliance on the number and and loled about how he can’t walk in a courtroom. Or my mom loled, and vicariously, her elite group of 13 Instagram followers.

It's looking like Benjamin's transition into adulthood will be nothing like mine. For one thing, he never went through a barrette stage and he's much better at metaphors. But of course, we already knew this because that's the thing we know for sure, right? The kid's unique.

Oh, I’m sorry, the ADULT MAN is unique. I guess something has changed, even if it’s only my vocabulary.

Still stumped on this geometry problem

Yesterday, 6:49 PM CT/ 5:49 PM MT:

Me: "Benjamin Benjamin Benjamin Benjamin hello how are you what's happening in high school why are you beating your face your bandaids look cool tell me what's going on it's your sister the second one talk to me Benjamin Benjamin Benjamin"

Benjamin: (does not emote)


This is what I believe: 

I'm a big part of what makes Benjamin's life meaningful.*

This is why I believe it:

I'm one of a few people (his family and a couple others) who know him the best. I know what makes him laugh and what makes him feel better when he feels bad. I know, the best that any of us can, how he experiences the world and how to adapt the world for him to experience it. I can do that for him on a daily basis. When we're in the same state.

This is a thing I've learned at college:

Long distance relationships do not work for Benjamin.

Given these statements, I conclude:

I need to be in the same city as him after I graduate. 


If only it were this simple, right?! This is the third time I've tried to write this post because I am having too many feelings. I think I'm developing a Life Conundrum. Maybe I'm being dramatic. I'm probably being dramatic.

But here's the thing: I really want to live near Benjamin. Being away from him for college has been really hard. I miss him and I feel guilty. Guilty because I was such a big part of his daily life, guilty because I can help my parents when things are hard or just everyday (not afraid to brag: I'm the best at lifting him). Clearly, he's a big deal in my life too (Exhibit A: I write a blog about him). 

Remember when I wrote about spheres? And how his life sphere is what he can reach out and touch, what he can hear and who is interacting with him in that moment? His sphere of life is small. Mine is my whole conception of the world. My sphere of living is as a world traveler, a learner, an abstract thinker in the past, present, and future. I want our spheres to overlap, but I also don't want mine to shrink.

I have such wanderlust, and I know that's a cliché millennial word. I love traveling. I was so happy when I was everywhere in 2014. I want to feel like the whole world is open to me, like my peers.

But I'm feeling left out of the postgrad excitement. The senior buzz of who is applying for this-cool-thing-in-this-part-of-the-world and that-life-changing-adventure-in-that-hemisphere. I'm looking at grad schools in London and all I can think is how far away from Benjamin I would be. I'm done being far away from Benjamin. Three months at a time for four years is too hard, and when I think about being happy after college, it's being back in his daily life.

So I'm conflicted. I want to be everywhere and I want to be by his side. When my classmates ask me about my postgrad plans I'm not sure I can say "spend time with my brother." But I can't imagine anything else.

 *He makes my life meaningful too. Duh.

to comps; compsing; to have compsed

In the cornfield where I go to school, "comps" is abbrevs for "comprehensive exercise" which is a fancy term for "senior thesis project." Did you know most of academia is making up synonyms so things are harder to understand and seem more prestigious?

In the context of my life, "compsing" is "researching myself and trying to not feel self-involved because I'm researching myself." 

Otherwise known as, I'm reading everything I can get my hands on about siblings of people with developmental disabilities. Specifically, I'm writing about the POSITIVE things about being a sibling of someone with developmental disabilities. I'm writing about why Benjamin has made my life great; what else is new.

But I have to wade through a lot of dismal findings. Like how overwhelmingly the research describes the negative effects of being a sibling. The strain on the family. The depletion of coping resources. The caregiving burden. Forgotten child blah blah depressive symptoms blah blah adjustment difficulties blahblahblah. Or I find a lot of weird things, like the script of two young sisters enacting a pretend radio show about a witch who was going to kill their nonverbal brother if he didn't learn to speak. That was this morning, deep in a book from the 80s.

Sometimes, I find things that make sense. Like siblings are more likely to choose helping professions (holla). Or siblings are more likely to have perfectionistic tendencies. And I immediately text this to my sister and she responds with "I'm at trivia singing frozen." 

I'm also writing about what makes positive outcomes more or less likely. My list of factors grows everyday (my outline is down to the letter N): gender, behavioral problems of your sib, family climate, type of disability, age, birth order, age gaps, caregiving responsibilities, socioeconomic status, culture, openness with friends, expectations for the future, locus of control, self esteem. If you're lucky enough to align all of these perfectly then everything will be peachy. That's going to be my thesis. Probably.

If anything is becoming more and more apparent as I research, it's that every situation is so unique and generalizing to serve the needs of academia is only so useful. Yes, we can identify risk factors and use the correlations to improve support systems. But what will really help a family or a sibling is an appreciation for the uniqueness of their situation. For the subtleties of family systems and the nuances of the sibling experience (do I sound collegiate yet?) For me, it's writing about what's hard and what's good and working on things like "openness with friends" and appreciating the unconditional love that I have with my brother. It's recognizing when I see myself in the pages of the research journal and when I don't. It's being proud to talk about what I chose to comps on because it's important. It's reassuring myself that I never imagined a radio show about a murderous witch coming after Benjamin.

2 years

Today it has been two years since Reid passed away. Today I am sitting in a Caribou somewhere in Minneapolis (or outside Minneapolis?) couch-surfing and living out of my car until I can move in for my senior year of college. Today I’m in limbo.

I suppose on first glance this past year wasn’t as exhaustively lived as the last—I traveled and experienced a lot, but not as aggressively, not as furiously. I stayed out of war zones. I sat and made art and read books. I traveled, but mostly to places I had been to before. I was reflective and contemplative and future-oriented. I learned, and often not in a classroom. I lived less anxiously than last year. Last year I wrote about restlessness and fairness and moments. This year I'm calmer, and more concerned with the greater timeline.

I’ve grown a lot in the past two years. I’m learning what I want from and can give to the world. Slowly, I’m trying on independence and responsibility and searching for my size in adulthood. Yes, life is exactly like shopping for clothes.

I know I would have grown up regardless of what happened two years ago today, but it still feels like a turning point. A sharp right turn into awareness. Awareness of fragility, of the illusion of control. Awareness of the responsibility I have to live my life to the raw edges of its potential.

And I’ve sat on this wake up call for two years now. I suppose it’s finally fitting into my worldview. I will make this choice, to live my life this way, because Reid didn’t get to. Because so many people don’t get to. Don't have the opportunities or the privileges that I have. Because, for some reason, or for no reason, I am lucky.

Reid, this year I didn’t light as many candles in ancient cathedrals for you. But I held hands with my campers. I rubbed Benjamin’s head through his fits. I listened to the pain of others and I did my best to be kind. I searched for meaning, and I accepted that I will be doing so for the rest of my life.

I also went tubing this summer, and I went so fast and so hard. Our uncle tried to fling me off the tube but he couldn’t. I held on too tight. I hope you would’ve thought that was pretty cool.

The Hulk and Other Things That Don't Seem Weird To Me

Here’s a brief description of Benjamin’s physique:

Weighing in at nearly 85 pounds and roughly the same height as his oft-high-heeled sister (the other one), Benjamin is slight for an 18-year-old Human Man. The majority of his weight is carried in his luscious brunette hair and torso, from which protude, in layman’s terms, a pair of “chicken legs” the color of underripe plums. Most strikingly, his arms are at least three times the thickness of his thighs—reminiscent of small tree trunks that wear grey-and-black striped sweaters. If one reminisces about such things.

This is how I am used to seeing Benjamin. It now seems weird to me to see his pale, scrawny, actual arms; I am used to disproportionate swollen sweater-wearing-tree-trunk arms---aka his scrawny pale arms in Velcro casts with crutch pads wrapped in thick cotton and topped off with a pair of very worn wool sleeves ripped from my mom’s oldest sweater. This is him almost all the time and I am right now realizing how funny this is.

He is The Hulk. I call him this when the strength of the clench of his face to his giant casted arm is otherworldly. He reminds us often enough why he needs all this gear between his fists and his face: it’s in each moment of mania and fresh facial wound. But as fresh as each battle is, the armor has become par for the course. It’s almost as if….his casts have become a part of him.

This is the plotline for a new sci-fi superhero thriller, and I’m trying out character names: Benjamin the Great Cast-Wearer. Benjamin the Hulk (derivative?). Benjamin Who Has Become Very Much Attached to My Mom’s Oldest Sweater. Benjamin whose family puts him in one step away from a strait jacket almost every day and every night.

It sounds awful like that and I fully realize it. Sometimes I do think it’s awful. He is losing muscle tone in his arms. Reaching out and touching and grabbing and using his arms and hands is how he learns, and we are restricting it. But it’s a pretty simple trade-off when it comes down to it: let him beat himself to a pulp, or don’t.

So Benjamin is The Hulk and this is our normal. He goes about his life in huge attention-grabbing swaddled arms, if the wheelchair and the beautiful hair wasn’t attention-grabbing enough. His must-have accessory isn’t red lipstick or an iPhone, it’s a set of stylish plaster elbow-inhibitors. I almost forgot that that’s weird.

Benjamin Turns 18 and I Make My Whole Family Write About It

Me: Benjamin gets to go to court. I’m assuming it will look like this:

Judge (in wig, with booming voice, sporadically slamming down gavel for no reason): BENJAMIN? BENJAMIN JAMES ROBERTS?

From the depths of a packed courtroom emerges Benjamin’s wheelchair, pushed by my cowering parents.


Yeah I’m not getting into playwriting any time soon. What the jaded theatre geek in me is trying to get at is that Benjamin is turning 18. He is about to be a legal adult, and one thing this means is that my parents will legally petition to continue to be his guardians.

So it’s a big time of change…except it’s to ensure that nothing’s changing.

Benjamin and adulthood feels like an oxymoron. Today he is an adult, at least legally, chronologically, literally. But he’s the same. He’s not moving out, he’s still going to high school for 3 more years, his voice isn’t getting any deeper. He’s skating over this hugely culturally significant transition with only a court date to mark the spot.

And a party. We’re throwing him a party, and we will register him to vote and sign him up for selective service and give out raffle tickets for his legal guardianship. In a way, we will mock legal adulthood and it’s irrelevance to us. We will celebrate Benjamin’s utter uniqueness and the silliness of a judge declaring his crossing of the threshold into Arbitrary Legal Maturity.

In the court records and the census forms, he’ll be Benjamin the Adult. In real life, he’ll be Benjamin the Benjamin. I’ll just give him more lottery tickets.

Our Mother: Eighteen. 18. Can I write it any more loudly? EIGHTEEN! The future. I can't believe we've made it to this age. I could be decrepit. Benjamin could be dead. We're both quite ornery and alive. We've made it this far through will, faith and love. With a lot of wine, laughter and tears mixed in.

Eighteen symbolizes the threshold to adult responsibility and adult life. College. Voting. For us it's just the threshold to the adult system. He is no longer a minor. A judge will decide if we have the qualifications to be his guardians. I'm still waiting for the training necessary to be his mom. I missed that parenting class. We'll probably be approved as guardians by default. I think his sisters would do a better job--but they need to have their lives. He is my life.

In 18 years Benjamin has grown bigger and stronger. In other ways he has stayed the same. Especially during the last ten years. He has sort of plateaued. His health issues stabilized (thank goodness). But the system he is in changes a lot. Yes, welcome 18. We are transitioning from children and family services to ADULT SERVICES. It means lots of paperwork and bureaucratic forms for Jeff and I to stress over. And I suppose we could feel sorry for ourselves. Like at every other transition--beginning with the big one, from womb to world, we could grieve what should have been (or we could rejoice over the college tuition we are saved!). But there really won't be much of that. Maybe at 21. That's when he will leave high school and begin the rest of his life. We'll begin the rest of "our" life. At least then Benjamin can have a little tequila through his g-tube.

But "the system" has made the decision that now he must move on to the adult healthcare system and the adult social services system. First we need to "qualify." Forget the normal we have found. Now we need to really be the mess the world sees. We need to get a high score on the state's level of need form. Now this is one test Benjamin will probably ace.

The last time we entered a new system was at his birth. We were literally "born" into the system. This time around we are a little more prepared. I have long ago trashed "it's supposed to be..." and accepted what it is. I have the savvy and the coping skills to manage the emotions and the paperwork. I am not a deer in headlights dealing with the new lingo and the three year old and six year old. And newborn in the NICU. They are 18, 21 and 24. And maybe we are a mess. But we are a great big happy mess and proud of it. Take it or leave it. Hello adult services. Here we are.

Our Sister: Thank you Benjamin, for your giggles and wiggles and keeping me grounded. 18--I'm speechless. But you know that can say a lot!

Our Father: Mr. B. Mr. Neat Guy. Flintstone. Benj-er-oni. Oinkman of the Apes.

It would take several paragraphs to list all of my nicknames for you, Benjamin, the names that pop into my head when I put you to bed at night, when I get you up in the morning or when we’re just “talking.” I suppose, now that you’re a young man of 18, I ought to stop with the silly nicknames.

No, I can’t do that. I can’t help myself. And it doesn’t matter that you can’t understand what I’m saying to you (can you?) or see my facial expressions. What matters is that you seem to like how I say what I’m saying to you. You like it (most of the time) when I put my face close to yours, rub our noses together and ask, “What’s up with (fill in the nickname) today?”

And if that gets you to smile? Well, there’s not much I like better than that goofy smile of yours.

Benjamin, 18 years ago you changed our family in many ways – some very challenging, some very wonderful. I can’t imagine our lives without you.

It’s been a long time since I’ve let myself dwell on the what-could-have-beens. The boy who might’ve gotten great grades and gone to a great college, like your sisters. The boy who might’ve enjoyed sports (the athletic genes would’ve come from your mom’s side of the family). The boy who might’ve watched the Cubs and Bears with me. (To your credit, being oblivious often is the best way to follow the Cubs. But not this year.)

Those what-ifs don’t mean much, Benjamin, because of all that you have accomplished in your 18 years. You’ve endured – and overcome – all sorts of medical issues, not to mention feelings of discomfort and frustration that we can only imagine. You’re undoubtedly a huge reason why your sisters are such caring, selfless and compassionate young women. And your mom? Your mom’s always been amazing. But since she’s been your mom? There are no words to adequately describe how beautiful she is.

Happy birthday, Benjamin!