Chuck & Sherri Leyda - What Each One Needs

We’ve known Chuck & Sherri Leyda for many years. One night I was scrolling through Facebook, and  noticed Sherri was posting in the middle of night (Yeah, I stay up late!). Something about frying bacon for the kids. They have three children, two of whom are severely autistic. I started prowling their Facebook page, trying to discover what their life is like these days.

“Pulled another all nighter with Ro and Clara. Clara actually went to sleep at 5 am,” read one post.  Another post reported, “ She was up all last night screaming, head banging, and pinching.” Another, written by Sherri, said, “I am thankful for Clara, who showed me how to be spontaneous within the parameters of a strict schedule; I am thankful for Rowan, who has shown me exactly where the end of my rope is and the knowledge that I can climb back from it; I'm thankful for Mary, who has taught me a completely different way of parenting and the joy of knowing her thoughts and feelings.”  I started to understand what their everyday (and night!) life was like, and I detected absolutely no resentment or resignation about what their life has become.

 

The Leyda family having snacks at the Minnesota Zoo

Chuck & Sherri Leyda are first-rate musicians! We met them back in the 1990s, playing at the Minnesota Renaissance Festival. We were the “Haymarket Minstrels” back then, and they, along with their bass player Jim, were “Kindred.” When they’re not at the Ren Fest, they’re the bluegrass / gospel /Americana group “Singleton Street.”

When I started this project of writing 12 songs about real-life people who have gone through great challenges in their lives, and come out stronger for it, I searched for a variety of people and situations, and that late night Facebook prowling led me straight to the Leyda family. One day I called them up. Chuck answered, and I told him I wanted to write a song about Sherri and him, and how they were able to deal with raising two severely autistic children. I heard him shout out to Sherri, “Loretta wants to write a song about our family!” They were open to the idea, but Chuck told me he absolutely didn’t want it to be a really sad dirge saying the kids are a burden, “because they aren’t!” He warned me it was a thin line to tread, between acknowledging the difficulties of their very unique and demanding needs, and celebrating the absolute joy they bring to the family. So, not a dirge, but also not a fairy-tale glossing over of the facts. 

I assured him I would try my best, and if the resulting song didn’t work for them, we would start over, or scrap the idea, whatever. I asked if I could come over and interview them, and see the kids, whom I had never met, in action. They told me that was definitely not an option. Strangers at the house were a source of anxiety for the two kids who are on the “spectrum.” Anything different from the daily routine is upsetting. But Chuck and Sherri came up with the brilliant idea of meeting them somewhere on “safe ground.”  We got together at a McDonald’s, then the next month at the Minnesota Zoo. Chuck and Sherri are proactive about getting the kids out among other people, rather than staying isolated at home all the time. 

I got to see first-hand how all three kids acted and re-acted with each other, their parents, and the rest of the world. Clara is 12 and doesn’t speak, though lately she’s got a few words. But she IS able to communicate. She’s made up signs for many things. She “swims” with her arms when she wants to go swimming. When she’s ready to leave somewhere (like the McDonald’s!), she’ll start “driving” with her hands on an imaginary steering wheel. Sherri hits the palm of her hand with her other hand and says, “This is the sign for ‘give me the schedule.’  She made that up herself. The huge break through with her was when she started nodding, and shaking her head, and the hand thing (schedule).  Just being able to say yes and no!” The schedule is very important in her life. At McDonald’s, Chuck shows me how it works. With two fingers, he hits his palm, one time for each activity on the schedule for the rest of that day: Play, home, snack, play, supper, bed, sleep tight. He repeats it once more. 

I ask if 10 year-old Rowan (who also does not speak) likes to get the schedule too. No, they answer, he doesn’t think that way. But, like Clara, he has his own ways of communicating. At the Minnesota Zoo, he taps his dad on the chest, and Chuck knows exactly what he wants. Dad swings the boy up onto his shoulders for a short ride. That picture is emblazoned in my mind; it’s in verse two of their song. When we all sit down at a table for snacks, Rowan’s treat is a giant cookie. He feeds bites of it to his dad, no words exchanged or needed. 

Little Mary is 5 years old, and she is neuro-typical, Sherri tells me (translates to she is not on the autism spectrum). She has the same brilliant red hair as Rowan, and the two of them are best friends. 

Rowan absolutely loves to climb, and he darts right up the rocks to be closer to the glass window of the penguin display. He crouches there, swinging his strand of shiny gold beads, and Mary perches close by, watching the penguins. Later, after the afore-mentioned treats, Clara decides it’s time to get going. She walks off down the hallway at a fast trot. No one freaks out. Chuck and Sherri call softly to her to come back. But Mary swings into action, running after her. When she reaches Clara, she calmly stands in front of her, careful not to grab her, and speaks softly to her till Sherri comes to retrieve both of them. This unforgettable picture appears in verse three of their song.

Clara took lots of pictures at the Zoo, mostly of herself, and also one of me. She handed her cell phone (never used to talk, only as a camera) to her mom, and posed with a huge smile. No words were exchanged, but Sherri knew what to do! That picture, still fresh in my mind, is in the first verse of their song. 

Clara and Rowan thrive on sensory input, yet it can also be overwhelming. Chuck told me, “Rowan doesn’t just want his beads.  He wants to be watching a video with music going on in the background while spinning beads and dropping legos from the side of his peripheral vision But the trick with Rowan, he’s always trying to over-stim himself and I’m just figuring this out. And when he over-stims himself, is when he breaks something. Now I say, you can have your video, but not everything at the same time.  Try just allowing one thing, and a specific place where you do the ipad, for instance.”

Clara loves watching roller coaster videos on youtube, but if the battery runs out, a tantrum can ensue. Chuck says, “Whether they're happy or sad, they’re always making an immense amount of noise.”   Sherri says, “Yes, non-verbal does not mean quiet!” On the other hand, neither of them can stand loud noises, “unless they make them themselves,” says Chuck.

I ask if they need total supervision, 24/7, and Chuck answers, “They have their safety zones, but the problem with Rowan is, you pay the price.  You can leave him alone in his room with a video, but then when you come in there you’ll find that he’s torn the place apart, or broken the TV or decided to spit all over the floor.”

Chuck tells me, “Clara is pretty happy.  Rowan is pretty happy. They go from 1 to 10, that’s the problem.  They get mad.   My kindle’s out of batteries, I’m going to claw, I’m going to attack you, literally.   But most of the time they’re happy.” Sherri adds, “Clara loves everybody.” In fact, at the Zoo, she kisses Sherri several times. She takes my picture, then touches my left cheek with her hand.

On Facebook Sherri posted, “The worst part is hearing her cry like she’s heartbroken, nothing I can do but listen to her cry. Lots of times I know why. (Like changes in their daily schedule, which can be devastating).  But there’s lots of times I don’t know what she’s crying about. And then, all of a sudden, she’s laughing hysterically. She’s little Miss Mood Swing, totally.  But the crying, that really cuts.” I ask her, “You feel like it’s real to her, what she’s feeling?”  Sherri replies, “Totally real!”

Chuck told me, “Rowan’s destructive as hell, he’s noisy, but he’s mostly happy when he’s jumping around the house. And when you come to pick him up from camp, he smiles at you.” He continues, “And Clara, when I picked her up the other day, she came running across, and she gallops, running all the way across the cafeteria with a smile on her face, and everybody lit up in that cafeteria, to see how happy she was to see me.  There’s a ton of myths about autism, there’s a ton of B.S. out there.  They do want relationships.”

When I sat down to write their song, it was more of a challenge than the other eleven. The others were stories with a beginning, a middle, and an end. The Leyda family’s story is ongoing. How would I start it? I looked back over my notes and found a place where we had talked about their having Clara, the first-born, and realizing she was on the autism spectrum. Chuck said, “She’s gone away from us. It’s beautiful, but it’s sad.” Sherri explains, “When she was born, we thought she’d live in our physical world. After that first year, we knew. You don’t know when they’re a tiny baby.” Chuck says she was his little fairy princess from day one.

And so the song begins, “Twelve years old, she’s their first girl, they thought she’d live in their world, but she dances on the spectrum where, Clara’s a fairy princess there.”  

As our day at the Zoo draws to a close, and we start walking toward the exit, Chuck walks hand in hand with Rowan and tells him, “I had a really good time with you today.”  I walk along with Sherri, and a bit off to our left are Clara and little Mary.  “Mary is sticking with Clara, isn’t she?” I ask. “Not grabbing or talking, just walking along beside her.” Sherri answers, “Yes, she likes to help.” 

All day, there has been no baby talk. They talked to them like the intelligent human beings they are. When one child got too far ahead, they would simply go put their hand out to that one, or calmly call their name. They had fun with their kids. They obviously had great joy in seeing the kids happy and having fun, like any parents. Earlier, Chuck pointed and said, “Otter!” When Rowan saw it, Chuck broke out in a big smile. At one point, Mary and Chuck hung over a railing gazing at the flamingos, their smiles totally infectious. All day long, Chuck and Sherri’s love for these three souls is unmistakable. They accept each one exactly as they are.

Mom and Dad understand that each of their three children are very special, and each one needs different things. Each one learns and communicates in different ways, and Chuck and Sherri have dedicated their lives to teaching and giving exactly what each one needs.

I named their song, “What Each One Needs.”

Sherri takes a picture of her daughter Clara, at the Minnesota Zoo

Rowan gets a lift from his dad, Chuck, at the Zoo

  

Chuck and his daughter Mary check out the flamingos at the Minnesota Zoo 

 

 

 

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