My evolving relationship with my sister with Angelman syndrome

[This post was originally written for and published on The Arc’s blog on March 19, 2018 for Developmental Disabilities Awareness Month.]

It’s now been almost five years since I first wrote about future planning. I was 22, and living in Washington, DC — 1,300 miles away from my family in Dallas.

At the time, my sister Caroline was 18. We were both entering new phases of our lives. I was fresh out of college, and she had just reached legal adulthood. (Her birthday milestones honestly were always more striking to me than my own). Caroline was born with a rare neuro-genetic disorder called Angelman syndrome. The prevalence of AS is estimated to be somewhere between 1/12,000 and 1/24,000.

I was in third grade when we finally discovered my sister’s diagnosis. I know, because my mom tells the story of how I went to school, and told my third grade teacher that I was worried about how I would take care of Caroline when something happened to our parents.

Years later, when my parents took our family out to dinner to celebrate my high school graduation, I have a perfect memory of sitting at the table feeling deeply guilty, and near tears. I was soon to move to DC for college. At the table, my parents expressed how important they thought it was that I go. When I later moved away to college, it was deeply unsettling for about a semester. Everything I had to do every day suddenly only revolved around, well, me.

The years passed, and I thrived in DC. I love that city. It’s my home away from home. But I felt those tugs. Sometimes the feeling was quiet, sometimes it was loud; but it was there. Feeling too far away, feeling too selfish. Feeling the desire to be a present fixture in the lives of my family members — to be a more active part of Caroline’s care network.

I’m now almost 28; she is almost 24. I lived in DC for eight years. Two years ago, I moved back to Texas. For one of those years, I lived in Dallas. It’s hard to explain the internal battle between feelings of obligation and not knowing with any certainty what you really want, personally. But you know what I’m talking about. It’s part of the human experience. It has nothing specifically to do with having a sibling with disabilities. It’s a universal experience. This is just a particularly salient part of how I experience this struggle. None of us can know if we’re making the right choices; We just do what we can, and keep moving forward.

What I can say with certainty is that living in closer proximity to my sister deepened our connection considerably. When living further away, I could still say hi to her on the phone. (Or like when she somehow figured out how to FaceTime with me while I was at work and she was in class).

Screenshot of FaceTiming with my sister

But living back home, she would spend the night over at my apartment. We’d make dinner, and watch The Great British Baking Show. She loves to watch my pet rabbits run around. I got back in sync with her nonverbal cues, and she got back in sync with my micro-movements. (I swear to you she can tell when you’ve had a thought, and haven’t even said anything yet — her emotional intelligence is through the roof). It’s these subtleties that were difficult — near impossible, even — to maintain, in a long-distance relationship with her.

Me and Caroline

 

There’s no right decision for me, or for other siblings. But I can say for certain that I don’t regret moving back to be closer.

I was reflecting on these past ten years just recently; I was doing some work in a coffee shop, and a family came in. A mom, dad, older sister and younger brother. The younger brother had Down syndrome. They were all hanging his art on the coffee shop wall. As I understand it, the sister had independently reached out to the coffee shop about featuring her brother’s work, and the other artist currently featured on the wall had volunteered to share space. As I chatted with them, and watched as they arranged his art, I had an odd sense of deja vu. Reflecting on being the sister’s age, and pondering college. (She appeared to perhaps be in high school). These thoughts can feel so isolating, but they are such a deeply shared experience. Meeting them by happenstance reminded me of that.

Growing up feels like continuously uncovering that behind the tapestry is a mess of loose ends. From chaos, comes order (or at least hindsight). When I was younger, I worried about Caroline’s future with a general sense of anxiety. Now that I’m older, I worry about increasingly complicated specifics. We have been having active planning conversations for years, and on some level, it grinds away in the back of my brain nonstop. Despite working so proactively, we still don’t feel close to having an answer, or feeling prepared.

I hope that for anyone reading this, these thoughts inspire thoughtfulness, not paralysis. I accept that we can’t ever know anything for certain. It can be overwhelming, but I fervently hope that other siblings and families don’t shy away from these conversations.

Amberley Romo is a software developer in Austin, Texas. She is part of a project to build a free, open-source, web-based communication app.

Event Roundup: Emberitas and Front Porch

Finally, finally, I have time to hit up local events and meetups again, and Austin has not disappointed. (See what I was up to the first half of the 2016.)

#Emberitas

First up, Emberitas. I found out about this event through the Women Who Code – Austin network. Three awesome women in the Austin Ember community decided to organize this free one-day workshop to introduce women to Ember.js. (All bootcamp grads, by the way — two from MakerSquare and one from CodeUp).

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Async patterns: Promises

Given our understanding of what async is, how the callback pattern manages async, and some of the deficiencies of the callback pattern, let’s dive into another, newer pattern — promises.

Promises are clearly exciting the JS community. As someone who never really knew JavaScript before promises, I have only an academic understanding of the magnitude of this shift. In fact, I think I was exposed to management of async first with callbacks to make promises seem just that much more awesome (like building a node server before meeting Express). Understanding both is important to a deeper understanding of each, individually.

As with callbacks, for a new developer, it can be difficult to sift through the massive amount of information available online. For the benefit of anyone else newly exposed to promises, in this post I’ve attempted to cull the resources and posts that I have found most enlightening through my own learning.

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What is asynchronous JavaScript?

When people talk about asynchrony in JavaScript, what do they mean? First, a real-world example of an asynchronous process (summarized here, and originally here).

Imagine you walk into a coffee shop to get a latte. If they’re busy, perhaps you wait in line. When it’s your turn, you place your order with the cashier, and pay for the drink. The cashier writes your order — maybe even your name — on a coffee cup, and places it behind the empty (not yet fulfilled) cup of the person who ordered before you. Perhaps the shop is quite busy and there are ten cups ahead of yours. That queue of yet-unfilled coffee cups allows for the separation of the cashier (processing and queuing orders) and the barista (fulfilling orders based on the information supplied by the cashier). This queuing process results in increased efficiency and output. (The original source expands on the metaphor and is quite interesting). This is an example of asynchronous, non-blocking behavior.

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Let’s learn the Dvorak keyboard

In the last week, the subject of the Dvorak keyboard has come up more than usual. (‘Usual’ being not at all.) The Dvorak keyboard is an alternative to the widely-adopted QWERTY keyboard, and was patented in 1936 by Dr. August Dvorak and his brother-in-law, Dr. William Dealey. There are a couple of devotees among my coworkers at MakerSquare, and at some point in one of our discussions, I became inspired — how quickly could I pick it up? Or further, how long would it take to achieve at least half of my QWERTY speed? So I tested, to get my baseline, coming in at 120 WPM.

Screen Shot 2016-06-04 at 11.01.18 AM

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Intro to web accessibility

Through presenting at bootcamps, I’ve so far had the chance to expose over 100 devs- and engineers-in-training to web accessibility —- what are we really talking about when we say ‘web accessibility’, who does it affect, and what are some very initial considerations to take into account? This is a short blog recap, including the deck.

Update (7.29.2016): Slide deck updated.

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‘Just break things’

‘Just break things.’ ‘Get your hands dirty.’ ‘Just dive in.’

A simple, and infuriating piece of advice that I’ve been given, and given to others. So surprisingly difficult to carry out sometimes. I was reminded by this bit of advice while working on a project last week.

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