Steps to Independence

I walked Wil into his first day of camp, then I walked back to my car. I shut the car door and cried for 5 minutes straight.

I couldn’t stop seeing Wil’s face in my mind. His big, wide eyes looking up at me above his mask. I knew that look. He was trying to be brave. He was trying to do what I wanted him to do. He was trying to do what he wanted to do. To do camp by himself. But he was scared. The innocence and trust in his eyes is so pure. It’s beautiful and terrifying at the same time.

Wil was all a bundle of joy on the drive to camp. Country music a-blaring, he was bouncing in his seat and yelling his songs out the window. No matter it was 19 degrees, the music in him was too big to be contained within the walls of the car. It needed to be released into the winter air.

He was most excited about his lunch. We stopped on the way to camp to pick up a Lunchable to pack along with the carrots, cheese, crackers and water bottle I packed at home. The Lunchable was a special treat – he chose the ham & cheese sub with the little Pringles packet and 2 Oreo cookies.

With weeks of virtual school, and now Christmas break, Wil’s mojo has slowly been declining. Wil is an energetic kid by nature, and I am very mindful of nurturing that energy. Wil has low thyroid, so it would not be hard for him to fall into sluggishness. For both physical and mental health reasons, it’s key to keep his energy high. And I know, personally, how physical and mental health go hand-in-hand.

For Christmas, Wil received a mini-trampoline and Luke Bryan CDs. I knew he’d love jumping around to his favorite country singer. I also bought one Luke Combs CD, because I knew Wil would want me to take turns with him jumping to music, and Wil has me about burned out on Luke Bryan! (Wil is agreeable to adding Luke Combs, Alan Jackson, Blake Shelton, Johnny Cash, Zac Brown and Kenny Chesney to his music selection on occasion). 

When I came across an email that the Saline Rec Center was having a winter camp, I read into it further. Then my heart sank when I read the age group was for kids ages 5 through 12. I knew Wil would not want to be with the 5-7 year old children, as he’s very much a teenager, but I also knew he’d enjoy the activities the 10-12 year old’s would be doing. As Wil is 13, I thought the camp director may make an exception. No hurt in asking, so I did. 

When I called the camp director and mentioned that I had a 13-year-old son with Down syndrome I’d be interested in signing up for the winter camp, her first questions surrounded Wil’s interests. This may sound routine, but whenever I mention Wil has Down syndrome, the first questions typically surround what his limitations are. Let that sink in a minute…when you are asked about your child, are the first questions about what they can’t do? 

Raising Wil, there are multiple micro intricacies like this that pop out in our daily lives. Many times, people are not being unkind, it’s truly a matter of not knowing. And you don’t know until you do know. I just happen to live in the know in this particular category. So when you meet people who are in this type of know, you don’t miss the cues, no matter how small. And the cues usually are small –which is what makes them so big.

The topic of Wil’s limitations never came up directly. In discussing who Wil was as a person, the conversation naturally unfolded into what his triggers were for certain behaviors and what extra help in certain areas he may need. The camp director determined that how the camp was structured would be a good fit for Wil, and described the group she would place him in (with 10-12 year olds). It also so happened that the staff member leading that group has an adult sister with autism. Though Down syndrome and autism are very different, there is a deeper understanding gained in growing up with a sibling with special needs. 

When I met the staff member leading Wil’s group at the camp, I knew right away he would be a good fit for Wil. Wil had a Master’s baseball hat on, and he said to Wil, “Ahh, the Masters! I love watching the Masters. So you play golf, Wil?”

“Uh huh,” Wil said. Wil looked around at the other kids that were playing ball. His eyes were wide and nervous, but he also wanted to join in the fun. The staff member got Wil settled and I asked him about his sister. 

“She’s doing great. She has her own agenda, you know?” I nodded. In his words were a whole world I knew. I didn’t know him, I didn’t know his sister, but I understood what lived under those words. There are pieces of this life that are difficult to articulate. They have to be lived to be truly understood. Even though each piece has its own personality, underneath it all the emotions are the same. And that’s where we met. It’s the same place I meet my friends in our Down syndrome support group. We don’t have to explain, thank goodness. Explaining takes too much energy and the words always fall flat. It’s an enormous comfort when you meet someone underneath the words. 

With the combination of the camp director and the leader of Wil’s group, I knew he was in good hands. It was time for me to go, and give Wil his first day at camp. I gave Wil a hug, said good-bye and walked back to my car. 

These are my first steps in opening Wil to greater independence. It’s a feeling I’m not sure I’ll ever be able to articulate accurately with words. But if you saw Wil’s eyes, you would know exactly what I mean without my saying a word.

The Same, but a Little Brighter

You know that “brillance” enhancement on your iPhone photos? How your picture is the same, but a little brighter? That’s how it is raising a child with Ds. There is a lot that is the same. So much that is the same. Then there are the experiences that take longer to emerge; I like to call it active patience. You try and wait, you try and wait, you try another tactic and wait. You continue on with active patience. Then it happens. It all comes together. Even though you’ve been trying and waiting, it feels like this big, magical surprise gift. That’s what makes it the same, but a little brighter.

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Wil’s Growing Independence

Lately, I’ve been thinking a lot about Wil as a young adult. Will he live with Matt and myself? Will he live independently with help? Will he have his own apartment with a friend? Wil is a very social person; he loves to swim, golf and hang out with friends. I know he’ll want to be involved in various activities as a young adult. Right now, with the pandemic, I’m always looking for ways to keep him active, healthy and interested in hobbies as there is less available. Recently, he had a virtual theater class with his Down syndrome support group. He greatly enjoyed singing and dancing with his friends he hasn’t seen for months.

Wil values his independence.  He takes walks by himself in our back field with our yellow lab, Woody. He calls these walks his “adventures.” While he handles most of his self-care on his own, he does not fully appreciate the dangers of traffic and strangers. He also doesn’t understand the value of money.  Over time, his understanding of finances and dangers may come. Or it may not. As I have not been gifted a crystal ball, what I can do is find ways to broaden his independence and foster his growth.

I thought Wil having time home alone with his good friend, Lila Harvey, would be a great independence booster for Wil. I asked Lila’s mom, Rebecca, if she would be comfortable with Lila staying with Wil for just over 2 hours without me home. Wil enjoys Lila’s company greatly, she is smart as a whip, and stands firm on her ground. She’s also very good at finding activities they both can enjoy; which is no small task especially for someone her age. I’m always impressed and thankful for their friendship. Rebecca and Lila were both on board.

When I told Wil he would be home alone with Lila, he looked up at me in shock, then said, “Yay!”

Wil and Lila both love music, so when Lila arrived, Wil got out his iPad and they started singing songs together. I left on that high note.

When I returned home, they were both racing their bikes in the driveway. Two pairs of mud-caked boots were on the porch and Woody was wet and muddy; his tail was a-wagging.

“Hi Mom!” Wil yelled out as he sped by on his bike. The scent of lemongrass bug spray hung in the air behind him.

“Hi Miss Christie,” Lila said, “we had a dance party then walked to the river. It was low and muddy, but we had a good time.”

I suppose in our own ways, we all tested the waters that day. Though our waters are not always crystal clear, they are good fun for jumping in and getting your boots muddy. I breathed in the refreshing scent of lemongrass hanging in the air as my son sped by at his own speed, his friend racing with him, and his dog’s tail a-wagging.

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