Parenting a child with Down syndrome in the summer

Sometimes I forget that just because Harper isn’t talking yet, doesn’t mean she doesn’t know what is going on. As summer break approached for her special education preschool class, I started preparing her the best I could. Because her whole body communicates how much she loves being there. And I knew she would be sad for it to end. 

But as the final week arrived, Harper understood more than I realized. In their classroom, they have a communication device with a hello and goodbye button. At the beginning of the day, they have the kids try to say hello with their voices, but they also have the button for those kids that aren’t speaking yet.  At the end of the day, they gather similarly, but for a goodbye. 

Harper started to happily refuse hitting the goodbye button and intentionally hit the hello button as the school year came to a close. It was her way of telling us she understood what was going on, but she was not ok with it. 

She might be the only student begging to stay in school. But I do love that she is so happy there. And to be honest I had gotten used to our school rhythm and was a little nervous about the change in schedule, more for myself than her. 

Summer expectations 

As we begin summer, I feel a little like Olaf, a snowman singing excitedly about summer, overlooking a huge issue that snow and heat don’t mix. In my mind, summer is supposed to be fun and filled with activities like going to the pool, park, amusement parks, and more. I imagine spending the extra time I have with my kids doing things other than playing in our home. 

But I’ve overlooked my reality like Olaf. It’s part being a mom to two toddlers, but it is also part Harper’s disability. And summer is already shaping up to be a little hard. 

A typical summer outing 

I take them for a walk at a park, only for them to lose their minds when they see the playground. But I can’t safely watch them both by myself. Harper is just too much of a wild card. She still needs one-on-one support in public. So, my kids are crying, trying to throw their bodies out of the stroller, as I see moms with multiple kids juggle the playground just fine. And I feel defeated. 

So, I bribe them with fruit snacks to get back into the car and what I was hoping would be a delightful morning outing has only lasted an hour. We are just in this awkward transition period, where my kids are wanting more independence. They are not happy in the stroller for very long. But they also aren’t following directions enough for me to feel comfortable watching them by myself at the park, pool, children’s museum, or store. 

The desire for more

Luckily, my husband’s work schedule is flexible, and he is able to help us go on fun outings that allow the kids to not have to stay home or in a stroller the whole summer. But I want to be able to handle more myself, but I’m reaching my limits. And it is humbling. 

The truth is my kids are happy. They are not asking to go on outings. Or feeling deprived of a true summer experience. Honestly, Harper would be content snuggled up on the couch watching TV with an unlimited supply of goldfish, pretzels, and popsicles. The problem lies with me. I’m bored and I created unrealistic expectations for the summer. 

Expectations are the culprit 

In Ann Voskamp’s book Waymaker she says, “Life is never made unbearable by the road itself but by the way we bear the road. It’s not the hard roads that slay us; what actually slays us is the expectation that this road isn’t what we hoped it to be.” 

A lesson I continue to learn – it’s expectations that are the culprit for my bad moods and restlessness. It’s the expectation that summer would be filled with activities and a change of pace. Only to realize our daily responsibilities didn’t really change, but the amount of childcare went down. So, I’m adjusting my perspective and trying to bear this summer road with patience. 

I don’t know why I feel like I need to be able to do all the things by myself. It must be a lesson God wants to teach me and humble me to remind me I can’t do it all. So, I will continue learning how to be ok with my limits. 

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