Aaron sat silently next to me gazing intently at my phone. His Developmental Disabilities Administration (DDA) case manager, Sage, had asked him a question, but Aaron appeared distracted. She repeated her question. Still, silence. After another moment he spoke: “Are you on vacation?” He wasn’t interested in the questions he had been asked or that we had a Teams call with Sage and his program manager, Kimmi, for an annual assessment. Looking at Kimmi on the screen, he wanted to know why she was calling from the tropics. I quelled my laughter. Aaron’s innocence and perspective brings me delight and I love to laugh. But, for Aaron, this was a perfectly reasonable question. He had spoken with Kimmi on the phone earlier in the day, not to mention, Aaron always knows “the schedule.” He knows who is out sick, on vacation, working at another house. Aaron keeps track of people, and Kimmi hadn’t said anything about being on a tropical island with palm trees.
“No, I’m in my office.” Kimmi seemed perplexed for a moment. “Oh! You’re looking at the background,” Kimmi said with sudden realization. “Give me a sec, let me see if I can change it,” she said. A minute later, her background switched to a non-descript background of modern colors. “Does that look better?”
“So, you’re not on vacation? you’re in your office,” Aaron said as more of a statement than a question.
“Nope, I’m in my office,” Kimmi reassured him.
The meeting continued with some difficulty. Aaron was rightfully distracted. It was Mama time. It was my day off and—true to our weekly tradition—I had come by for a lunch visit. We had finished our lunch and were ready for the next activity, but we were varying from our typical routine. A few days earlier I had been informed that Sage was conducting some annual assessments required by the DDA. Aaron has had a DDA case manager since before he was five years old. Now that Aaron lives in a residential program for adults with disabilities, Kimmi is a constant part of Aaron’s life. Kimmi manages Hope Human Services, which is a paid contractor with the Department of Social and Human Services (DSHS) in Washington state, where we live. The DDA is a division of DSHS.
Sage had a call scheduled with Kimmi, fondly called “Boss Ma’am" by Aaron. It was scheduled to last up to three hours. Sage is relatively new to the DDA and has only been Aaron’s case manager for the last few months. I don’t remember past case managers requiring Aaron to participate, but Sage is just getting to know Aaron. She asked us to call in for a few minutes, so she could indicate that he had participated. I was told Aaron could stay on the call for as long as he liked. When he was ready to go, he just needed to ask to be excused.
Sage might not have realized just how much she was asking of Aaron. Time is a major trigger for this young man. The best way I can explain it is Aaron has his mind full of fun and exciting things he wants to do with family during a visit. Full, in fact, with way more ideas of things he wants to do than what time permits. Even when Aaron is home any variation from the schedule creates extreme anxiety. This creates problems daily. I was only able to convince Aaron to join the call by assuring him it would only take 5 minutes. I was envisioning us calling in, making some small talk, and leaving the meeting. Sort of like having Sage take attendance and moving on. Clearly, Sage was looking for a little more engagement. Aaron tried hard. I was proud of him as he had a brief exchange with Sage about goals. He answered a handful of questions but was becoming increasingly concerned.
“Last year you had a goal to complete morning routine each day, is that something you want to keep as a goal this year?” Sage asked.
Ignoring the question and turning to look at me, “It doesn’t waste time, Mama?” Aaron asked.
“It’s fine. You can talk to Sage for a few more minutes. We still have time,” I reassured him.
“It’s not 2 o’clock? Still two and a half hours?”
“Yep, the visit is still two and a half hours. It’s okay,” I soothed.
Sage reiterated her question. Aaron looked at me, “still two and a half hours?” he repeated.
After additional reassurance, Aaron reengaged with Sage: “Yes. Of course. I take my shower, take out the garbage, and put my sheets in the washer. That’s morning routine. Every day.”
There was some back and forth between the two. Then Aaron turned to me again. “What if we run out of time?”
“Are you concerned that we might not have enough time?” I asked him.
“Maybe just a teensy, weensy bit of a yes,” Aaron said. He motioned with his hand, lifting it nearly to his face. His thumb and straightened pointer finger were a few millimeters apart with the other three fingers jutting awkwardly out in a fan. He peered closely between the thumb and forefinger, as though deciding whether the distance presented there accurately described how much anxiety he felt.
“If you’re ready to end the call and continue Mama’s visit, it’s ok for you to tell Sage. You can ask her if we can go,” I encouraged.
Aaron looked at my phone, “Um, excuse me, Sage. I just want…um, I would hate for someone to get angry or yell or scream or break things. And we don’t know when that could happen. I mean, it could happen any moment. That someone could get upset. Or yell.”
“Are you saying you’d like to say goodbye?” Sage offered.
“I mean, yes, anytime…it could happen. You never know. And someone could misunderstand or accidentally get mad,” Aaron explained.
With some additional prompting, Aaron was able to ask to end the call. The two of us turned our attention to watching a CD while I read a letter—out loud—that Aaron had written me. I actually stayed 20 minutes longer than planned, sort of in recognition of his efforts to stay calm. It felt like a minor miracle to have the visit end so well.
Ten years ago, I started a blog. It was not well-planned, nor long-lived. I may have written five or six entries, then felt extinguished by high expectations. In my mind, my blog was the road to fulfilling a lifelong dream of writing a book. No one has yet told me an easy way to make an idea into a blog, into a book. I have had to reassess my intentions. I called my old blog Braving Autism. I think the name was supposed to infer an epic struggle. I cannot say I had given much thought to naming the blog. So much has happened since I started that blog in 2010. As I began thinking about a blog in 2023, Braving Autism no longer sounded right to me.
There is so much caustic Web content. So many people searching for something. So much negativity darkening our auras. All of us are braving something. I have realized my motive to writing a blog is to offer hope to people by sharing some of the amazing stories about Aaron. My journey with Aaron has largely been a day-by-day experiment. Each day I am reaching for ideas and strategies that could help me conquer the problems besetting me. The problems besetting Aaron.
I thought for a long time my blog would be the story of my son, Aaron. But it must be about more than “just” Aaron. My story is about this amazing young man and how being his mother has shaped and molded me. Telling Aaron’s story encompasses every life that touches his. The story is about my reaching. Practically from Aaron’s first moments I found him to be an enigma. My mother raised 6 children. She was at a loss for suggestions as I bungled my way through the first months of motherhood. It was an agonizing time. The 1990’s were the Dark Ages of autism spectrum disorders. As I muddled through, trying to help Aaron make sense of the world, it changed me. I believe God made me Aaron’s mother. I believe it now, but more importantly, I believed it in 1991. As deeply as I held that belief, I felt more keenly that God did not send Aaron to earth to fail. This meant I had one purpose: to do whatever it took to help Aaron find success.
My faith leads me to try to live bravely. Boldly. Fearlessly. Valorously. These words mean hope to me. Aaron is Bravely Autism. Every day he gets up, he faces the same challenges he faced the day before, but he is himself. He knows he loves loud music, ridiculously spicy food, shooting long-shots with Billy Butt—his basketball. He knows what is important: family, friends, connecting with people. Aaron touches others’ lives. Living with Aaron causes me to reach. Stretch. To try again when the first attempt did not go to plan…or the tenth, or the hundredth. I have learned that growth comes slowly and is hard-won. I have learned to take my struggles as they have come. I have not spent much time asking why things happen to me, or why Aaron faces challenges other people cannot relate to.
Bravelyautism.com is where I plan to tell this story. I love to talk about Aaron. I am sure I will not be as active a blogger as many—I have a busy career and a hectic life. Nonetheless, year after year, I have felt a longing to write about the adventures I’ve had, to share some of the sorrow we’ve endured, and the troubles that were so insurmountable in real time. It feels good to look back. Aaron has come farther than I ever dreamed. Let me convey hope—hope for today and tomorrow. There is no defeat when, every time we are stopped by life, we pick ourselves up, shake off the feelings of anger and apathy that would thwart us, and keep trying. These are the things I’ve learned. I hope they will be found to be worth reading.
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