My son, Cowboy, continues to hold the title of World Champion Socializer, ever broadening his sphere of influence. And as his social circle grows, so does mine.
A few months ago, I learned of a self-advocacy group for individuals with challenges. As I do frequently, I tucked the information into my cranial card catalogue under C, for "Cowboy’s Adult Life," the fastest growing category. Having been an advocate for him for 23 years so far, I thought it important that he learn to speak up for himself, even though my job is a permanent position. When I asked Cowboy if he was interested in the group, the Most Social Man on the Planet said, “Yes.”
I contacted the ARC of the Gulf Coast, an organization that promotes and protects the rights of special needs individuals; our local chapter of Texas Advocates falls under the umbrella of the ARC. I spoke with a kind woman named Sasha. It wasn’t until weeks after meeting her in person, I realized we’d met on the phone two years earlier, during some of our darkest days with Cowboy. I'd called the ARC for help, and my call was returned by Sasha. It was an unexpected pleasure to thank her in person and hug her, and I was glad she could see Cowboy doing well.
The monthly self-advocacy meetings Cowboy has attended have been via Zoom, due to covid restraints. He already knew a couple of the members, but most attendees were new to him. Using his iPad, he answered questions from the group, and I stayed nearby for any technical issues or questions directed to me. As is my norm regarding anything new for Cowboy, I was nervous. Nervous about his talking over the others with his iPad, or repeating things, or talking about random things like Moody Gardens Palm Beach or Christmas Day or the entire Thanksgiving menu he’s had planned since New Year’s Day. But the group took Cowboy’s interruptions in stride, and were interested in the various topics he typed into his device. I took another giant step away from micromanaging Cowboy’s life. It was a wobbly step, but a step.
Because of my own insecurities, I later called a couple of the caregivers in the group, and asked, “Do you think Cowboy can advocate without being verbal? Have there been others who are not verbal?”
“Of course he can,” they assured me, "and yes, there are others.”
I still wasn’t sure. Not because Cowboy isn't capable, smart, or resourceful, but because my mind hadn’t stretched that far yet. Often, I’m too close to his struggles to see all his potential. Then I recall the times I’ve backed off and been astounded by what he understands and communicates.
Cowboy’s new group is a serious one. They call their state representatives regarding funding for individuals with challenges. They’ve traveled to the Texas capitol. They discuss various laws, and changes that are needed. Hearing all they do, I was more convinced than ever that Cowboy belonged in this group.
Our first fundraising experience was their annual garage sale. Never in my life had I seen such a sale; donations were abundant. As usual, my worker bee son was delighted to help, and worked for hours to prep for the sale as well as on the day of the event. It was hot and humid, but he never quit or complained. The money raised helped offset the cost of the group’s going to the Texas Advocates Conference in Denton, Texas. Which, of course, was of highest priority to Cowboy - it doesn't get any better than hanging out with friends in a hotel. "Conference" and "hotel" and "Denton," were primary discussion topics for weeks.
Finally, the day arrived, and Cowboy, Flash, and I set off to learn about the self-advocacy world – a world that fosters more independence, confidence, and unity. As we parked in front of the hotel, Radar, Cowboy’s employment assistant, was arriving with one of his other clients, Happy. Happy is self-employed, and sells his products at various conferences and markets, with Radar’s assistance.
“Radar is here to help Happy,” I explained quickly, lest Cowboy thought he’d be parentless for the weekend. Maybe one day soon he will be.
We headed to our room, and, as usual, Cowboy opened his luggage faster than you could say “Parent Nap Time,” but I intervened before he put on his swimsuit.
“Let’s go check everything out first, Cowboy,” I suggested. He obliged happily, knowing pool time was imminent. He was thrilled with the pool; Flash and I were thrilled to see a barista behind the counter of the coffee bar in the lobby. It was the quickest hotel tour in history, and we were in the pool within 15 minutes.
Everywhere we looked, we saw self-advocates. Before the conference, Sasha had told me, “You’ll be in the minority; this conference is organized by and for self-advocates.” Indeed. My hope grew with each minute of the weekend. With every speaker I heard, every private conversation I had, and every time I watched self-advocates interact with their peers.
Radar had tried to prepare my mama heart for letting go more.
“When you get to the hotel, give Cowboy a notecard with your room number and floor number on it, so he can go up to the room if y’all are doing something else.”
I stared at Radar with my you’ve-got-to-be-freaking-kidding-me-Radar-because-I’ve-never-done-that-before look. He gets that look a lot. He’s not only good for Cowboy, he’s good for me, continually reminding me of my own offspring’s age, as I put my motherhood engine in neutral for a while. I’m learning a lot.
I forgot about the notecard, conveniently, but did explain to Cowboy that this conference was for him, and we were glad we could go with him. I wanted him to feel ownership of the weekend. As an elder social butterfly in our family, I realize I can’t make every group situation about me – about who I could visit, what I want to do, my personal schedule, etc. We take turns doing different things on vacations, but this was different. This was about Cowboy’s identifying with his peers and learning to advocate.
To that end, Flash and I chose a different table than Cowboy during dinner, as well as during the large group movie time later. It was strange to separate so much, but I’d been assured by other caregivers that “This group looks out for each other.”
Before the various sessions the next day, I asked Cowboy which ones he wanted to attend, which was another big step for all of us; serious food allergies have always demanded that we be nearby in case something detrimental to him is served.
“What about food allergies?” I’d asked Radar before that weekend, when we discussed my backing off.
“They don’t serve food in the sessions,” he answered.
“What if they serve snacks between sessions?”
“You can show him which snacks he cannot have at the snack tables.”
“Do you think he’ll pay attention to what the presenters are saying?” I continued.
“I think so. He’s often paying attention when he looks like he isn’t.”
It’s humbling to learn about your child from someone who has better vision than you at times; I’m grateful for Radar Vision. My many questions were met with rational answers, creating a quandary for me as I clung to my status quo. I’m not fond of change.
Cowboy’s first conference session was my selection also, all neurotic mothering aside. Yoga and meditation. I could use all the stress relief I could get, as could Cowboy. We sat in different sections of the room. As the instructor explained the techniques and how they help relieve tension, both physically and mentally, I thought, Perhaps we should do this regularly at home. The stretching, deep breathing, and clearing our minds of others things left me surprised. It worked effectively, and I felt the effects well into the evening. During the session, I’d glanced back to see Cowboy fully participating. When the instructor asked for feedback after our exercises, Cowboy spoke out of turn with his iPad, and talked over others a few times. Again, a group of peers was unbothered, and the instructor then asked Cowboy questions directly. Apparently, I’ve been spending a lot of time running interference in Cowboy’s life, when situations could have taken care of themselves. I’ve been uptight for so long, it has become ingrained. Little by little, it’s being chipped away by reality checks that come more often than not.
That weekend, I watched my son take notes, copying certain words on a PowerPoint presentation into his notebook, as I helped explain legislation. Later, Flash found me sitting with other moms in one of the meeting rooms, waiting for the next session to start.
“Where’s Cowboy?” he asked.
“In a different presentation,” I answered. He gave me the same look I give Radar, then went to check on Cowboy.
Flash and I are a work in progress. Cowboy is progressing much quicker.
During the banquet that night, we heard self-advocates speak about their journeys. It was moving, and once again my eyes opened to another world that was closed to me before I had Cowboy. I was inspired by everyone who spoke, received awards, helped plan the conference, and attended. They exemplified beauty and courage. And fun. To end the evening, the entire group played Bingo. Amazingly, I wasn’t the most competitive person in the room that night; Cowboy’s friend Astaire is quite serious about the game, and, thankfully, won multiple times. And Cowboy’s friend Happy threw his arms up in the air every time he won, like a true Olympian. Joy was palpable.
As the group broke up, Sasha asked if we could hang out for a while. She and her husband, Tico, a kindred spirit to Flash, would be up talking.
“It depends on what Cowboy wants to do,” I replied. It was my familiar mantra. “He’s saying he wants to go to bed.”
Now, dear reader, we were at a critical juncture. Should we do what we’ve always done, or should we try something else new? I wondered, as if I hadn’t had enough change in two days. Once in our room, I looked at Flash and said, “Well, Cowboy is sleepy, but we want to stay up and visit. We could leave him in the room.”
“In the room? With whom? Do you think Radar would stay with him?”
“No, by himself. Radar is here with Happy, and he needs his own time.”
“Oh yeah, that’s true,” Flash agreed.
We looked at each other in silence, my heart feeling a little fear, but mostly boldness.
“What Would Radar Do?” Flash asked, as I envisioned everyone on the planet wearing WWRD bracelets every day.
“He’d say that Cowboy is 23, and can stay in a hotel room alone,” I answered.
“Dad and I want to go to the lobby. Do you want to stay here and watch TV by yourself, or go with us?” I asked Cowboy.
“Stay,” he told me.
Immediately, I remembered we brought Cowboy’s tracking device. And we could sit at the bottom of the stairs where we could see if Cowboy came out of the room and walked down the hallway. We kissed our boy goodnight; when I went back for cash a few minutes later, he was already snoring. As the night turned to early morning, I no longer watched the stairs, but checked the tracker every now and then. It was one of the biggest steps we’d taken in 23 years.
Down in the lobby, we learned even more from our group members’ varied perspectives and stories of their lives. It was both heart-wrenching to hear of their struggles and exhilarating to learn how they overcame obstacles, just as Cowboy has and will. Things I thought might be best for Cowboy’s future were challenged by those who know more. A bright light shone on my insecurities and fears, and my mind opened more to new ideas. I soaked up every bit of that needed conversation, and wanted to know more. It felt like a huge safety net suddenly appeared beneath Flash and I; we wouldn’t be alone in the coming phases of life, and could glean from the wisdom of others. I could have sat there well into the next afternoon, just listening.
And that’s what I must do at home - listen. As Cowboy finds his voice in speaking up for himself, advocating for his desires, rights, needs, and future, I must pay attention and learn things only he can teach me.
