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.