Written by: Amanda Lukof
This is a three-part series. Parts one and two are included here in this blog post. Part three is coming soon!
Part One: The Journey to Departure Day
I take my brother, Liam, on our first-ever 1:1 trip (one that requires a flight, at least) to Los Angeles. I post a lot here about some fairly personal stuff, but I'm going to be a bit more vulnerable than I have before because I think it's important to share the rollercoaster that is Life with Liam.
It all started with this book, and a panel Jerry Beck is speaking on at WonderCon in Anaheim this weekend. Not surprising to anyone in our family, Liam wanted to fly across the country for one single panel. More surprising for a guy who has flown twice in the past decade, but that's neither here nor there. When Liam wants something, he is laser-focused.
He and my parents started to talk about the trip in theory last summer. Jerry sat on a panel at WonderCon last year, and Liam figured he was a sure thing this year. And so the planning and iterations began in his mind. My parents told him he'd have to contribute financially because he's canceled more than one of these trips last minute before. Liam agreed, and then reneged, agreed again, reneged again. He started several fights with my parents over the trip for reasons which were at all times not based in reality, but stemmed instead from his anxiety. He called my parents terrible names, cursed a lot, threatened a variety of things we know he'd never act on, but still suck to hear. It was really hard to watch.
At some point before Christmas, I decided that maybe if I were the one taking him, he'd be less combative. My parents needed a break, and we all wanted Liam to succeed. Liam and I never come to blows the way he does with my parents (that's on him, not them, and a story for another day), and I thought he wouldn't bother them if he had to plan the trip with me. Wishful thinking.
Between Christmas and today, Liam has texted, called, or emailed my parents about this trip no less than 143 times (the math maths, trust me). He has communicated with me directly about the trip in the same period about 27 times.
[This just goes to show that even though Liam is now 26 years old, our parents are always the first people he goes to to ask questions, complain, etc. The caregiving and parenting never really stop. In Part 2, I'll outline just how much planning and organizing went into this for my parents and Liam's full-time caregiver, Cida, to set me up for success over the next 4 days.]
For now, back to the story...
Liam also tried to change the trip a few times. "Maybe we could go back to Tokyo instead?" and "I've really been wanting to try those all-you-can-eat places in Vegas." I reminded him my Christmas gift to him was a trip to L.A., not Vegas, and definitely not Asia. As frequent as his communications have been, they have for the most part been positive in tone and content, but things took a turn for the worse over the last few weeks.
Liam has been very patiently (it's a relative term) waiting for WonderCon to post the schedule of events since the fall to see when The Jerry Beck Panel For Which This Trip Was Planned would take place. We were initially going to wait until the schedule was posted to book our flights, but Sunday is Easter, so we couldn't wait forever. We always knew there was a chance that Jerry's panel would fall on Saturday, after our flight. I tried messaging WonderCon directly to ask about Jerry's panel, to no avail. I also tried to book a red eye home, but that was a no-go because we have to be home to NJ in time for Saturday Night Live. (Liam is still concerned that 3 hours won't be enough time to get back to our house from the airport on Saturday night, despite the fact that it's a 45-minute drive. I'll be reassuring him of that every 30 minutes on Saturday...)
Liam has been very understanding about the theoretical chance of missing Jerry's panel. "That's ok, there's a lot of other cool stuff we can do in L.A. Let's do a Warner Brother's Studio tour, I can pay for the tickets with my money from work! I also really want to go to a Bob's Big Boy restaurant." I could tell Liam's anxiety was firing in the background, but he was trying so hard to cope.
When the schedule was finally posted a few weeks ago, and Jerry's panel was announced for, of course, Saturday, Liam spiraled. By that point, he had already given me the $500 he promised to contribute. Here are few snippets, some sent to my parents, some to me, from this past week.
• "I want my money back!!!!!!! I rescind my promise and refuse to pay for anything for California. So give it back or you’ll be sorry!"
• "If I can't see Jerry Beck, I want my hard earned 500 back."
• "I have almost no money now, and I need more to get more snacks!"
• "So please give me the money back."
The last few (slightly nicer) texts were to me. I ignored him, and within 7 minutes, he wrote back once more: "Forget what I said." I told Liam that he can't speak to me or Mom and Dad that way, and if I hear that he has before we leave on Wednesday, I'm not going to be taking him. That sucked to say because I knew I'd have to follow through with it. It's so hard to watch Liam's anxiety take over and not be able to do anything about it. Logic and rationale do not work. For my parents, my sister, and me, it's really difficult to sit back and not go into fixing and logic mode. We want him to see it clearly the way we do, to just be happy. But, at the end of the day, Liam needs to get through it on his own terms at his own pace.
Once he accepted that we wouldn't be able to see Jerry's panel, Liam went into problem-solving mode and texted:
• "I really wanted to get Jerry Beck's autograph. He lives in Los Angeles. Maybe we can see him at his house? I know that's a long shot through. His address is 827 N Hollywood Way, Burbank, CA 91505. What time will we arrive on Wednesday? I sent you his contact form, the address is on there. Check your e-mail."
Don't worry, Mr. Beck - We are NOT going to visit you at your home (or your office, which I think is what that address actually is). All kidding aside, that same contact form Liam e-mailed to me had an e-mail address for Jerry. I figured what the heck? Have to try, right? I sent him a note letting him know that we'd be in L.A., but had to fly home before catching his panel, and if there was any chance he would be willing to mail an autograph to Liam, it would mean a lot to him. Jerry got back to me in less than 10 minutes asking for my address. What a mensch!
We are just about 24 hours out from our departure, and I think we've made it through the potential roadblocks. Wish us luck!
Part Two: Improving Awareness By Holding People Accountable
Liam and I had a great trip to California, and I'll share more in Part 3, but I felt the need to write about some of the harder stuff today. Traveling solo with Liam dialed me in even more than usual to people's perceptions of him. People treaded lightly with Liam around. They looked at us differently. They made assumptions about Liam like his age, his abilities, and his challenges, which in turn made me feel even more protective than I already do. They also made assumptions about my feelings, which made me feel angry and sad.
Our first night in California, we went to dinner at an Italian restaurant that was decorated floor to ceiling (literally), and Liam loved it. It was not part of our itinerary, and he was so proud of himself for being flexible. I was really proud, too. He was overstimulated and wanted to walk around to see everything while we waited for our order, but it was crowded, and I told him he had to stay at our table. He was fine to sit, and sway in his Liam way, while taking in all of the surroundings. Our waiter came up at one point and asked, “can I get you a real drink?”, then with a glance to Liam and an ostensibly sympathetic look back to me: “it looks like you could use it.” Sorry what? Did he just imply that I need to drink to tolerate having dinner with my brother? What the actual [insert explicative here]?? I left a nice tip, despite the urge to do otherwise, and hoped he’d use it to buy a freaking vowel.
At Disney Land the next day, after trying a few lines the “regular” way, Liam opted to speak to the Disability Access Services (DAS) team in order to book rides in advance and minimize wait time. This allowed us to plan ahead, in 30-minute windows, which kept Liam’s anxiety at bay in a huge way. It also allowed us to “cut” the line, which made other people around us less than happy. Lots of “can’t you just wait like the rest us?” Or, my favorite, when we were in the DAS line with a bigger family, one of whom was an adult woman in a wheelchair: “She’s disabled, not the rest of them. Why do they get to cut the line with her? That’s not right.” Sure, because what would be “right” would be to make her miss the joy of riding with her grandchildren and leave her to do things alone without them? Got it.
On our last full day, while Liam was patiently waiting 25 minutes for his long-awaited lunch at Bob’s Big Boy in Burbank, one gentleman asked me: “So does your son have a brain injury or something?” I was genuinely shocked, but I smiled and said, “actually he’s my brother and he has autism. He’s doing great, don’t you think?” Liam was none the wiser, happily bopping around the waiting area looking at pictures from Austin Powers when the famous Bob’s Big Boy statute was floating in outer space. In that moment, I was more grateful than ever for his blissful ignorance.
In each of these moments, I was outwardly understanding, but inside I was really, really angry. Shouldn't people get it by now? Don't we talk about disability and autism and differences and ALL THE THINGS enough that people should be doing better? I thought about this a lot, especially in the moments when we had some really wonderful experiences that proved to me that yes, we have come a long way, and there are people out there who really do get it. [Thank you, especially, to the amazing gate attendant with United who gave Liam a special area to walk around in while our gate was mobbed due to a delayed departure. He saw Liam struggling in the pre-boarding line, asked Liam what he was worried about ("getting home in time for SNL"), and found a solution for us at a moment when Liam was very close to making a turn towards the worse.]
Back to the ones who don't seem to get it, at least not yet...Here's the conclusion I came to. Yes, the people in the above examples can and should do better. At the same time, I can be more understanding and give some grace because the reality still is, if you don't live it, you don't get it. I can't speak for anyone else, but I know I tend to take for granted my understanding and implicit empathy in this world. I don't take for granted that Liam gave those gifts to me, but I do expect others to just get it, and maybe that's not fair.
Looking back, I wish I had said something in each of those moments, more explicitly than I did at Bob's Big Boy. In reality, I was afraid of confrontation, but with the right tone and approach, each of these scenarios was an opportunity to teach, and to learn in return. It can be as simple as "Please understand that your words can impact those around you," which is a lot like my favorite response to people that still (again, how??) use the R word - "There are better words to use."
Words matter, but people don't know their words are hurtful and/or misguided if we don't tell them. So I guess that's my call to action for today, and my way to make a dent in the awareness column. Have the hard conversations, call people out, explain why their words and assumptions are hurtful. In return, listen and learn yourself, and share your experiences to amplify the impact.
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About the Author
Amanda is the Co-Founder/CEO of Eleplan, inspired of course, by her brother, Liam. Eleplan is Eleplan is a HIPAA compliant AI-powered platform designed to support families caring for loved ones with unique needs. Whether you’re managing a disability, chronic illness, aging, or all of the above, Eleplan meets you where your needs are and helps streamline planning across all of life’s moments. Learn more and sign up at www.eleplan.com.