5 Ways Our Family Has Learned to Navigate Life on the Spectrum

Nothing prepared me for the first time the word “autism” was mentioned during my daughter’s second year of preschool. I realized she was dealing with some challenges, but this meant she would need support in school. Over time, however, we have learned that just because her needs are not the same as those of her peers, that doesn’t mean her life experience is any less valid. It doesn’t mean we have to put our plans on hold. We have learned to dance the dance of autism.

When our daughter was 4, we began sailing during the summer. We lived aboard a 29-foot boat and cruised the Great Lakes for 93 days. Armed with her iPad for use during long runs and her much-needed quiet time, she could enjoy every day of our journey. Ultimately, we were able to adapt our drive down to Houston, and this dance has continued into our life on the marina, where we live aboard full-time. Life is structured with a predictable routine consisting of homework, piano practice, quiet time, reading to therapy dogs at the library and even special needs competitive cheer.

Autism can have its challenges — I’m certainly not trying to minimize that. But it does not have to seem like a roadblock. Here are some ways we navigate life on the spectrum.

1. We’re mindful of our daughter’s tendencies.

We know our daughter needs a somewhat predictable routine and she needs downtime between her adventures. For example, when we go on vacation, we know we will not be able to pack our day with sightseeing excursions. We will do one activity, then retire to our hotel room for a couple hours before going out again.

2. We take advantage of school resources.

Our daughter enjoys school, and we have encouraged her to become involved in school activities. She formed a strong relationship with her music teacher and joined a keyboard class after school. The teacher knew our daughter well enough that she suggested she join the older kids’ beginner class because it is quieter. We take her to after-school family nights and encourage her to make projects for after-school activities. She created a Pokemon stage for her school’s “Cardboard Carnival.” It was uniquely hers and she was proud of it.

3. We don’t shy away from opportunities to socialize with friends.

We always encourage our daughter to see her friends after school. She always has a good time and her friends are very accepting. Often, she needs to take a break by herself during a party, and one time she spent the entire party inside the bounce house!

4. We also participate in activities for children with special needs.

I remember when we attended our first sensory-friendly movie. Our daughter was able to sit through the movie without covering her ears, and the low-pressure atmosphere allowed me to relax. Our daughter participates in special needs competitive cheer and has attended a special needs princess ball. Next weekend, she and I will spend two nights sleeping in a cabin at Camp Be an Angel, and in August our family will spend a weekend at an autism resort. The special needs community can be a tremendous source of support, and it is a chance for our daughter to participate in activities that are ordinarily less accessible and to develop strong friendships with kids who share her interests and experiences.

5. We’ve learned to let go of comparisons.

The reality is that all kids face challenges, and there is no mold into which every human being must fit. Yes, we have friends whose children talk more than our daughter and may not need sensory breaks. These kids may be able to sit for hours in a desk in a classroom, but they, too, will eventually have to make decisions about their lives — and they have no more of a guarantee of an easy ride than our daughter does. We do things differently, and there is absolutely nothing wrong with that.

Autism has done nothing to stop us from achieving our dreams. Learning to navigate our family’s challenges has not only been possible, it has ultimately been rewarding.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.