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Isolation and Autism

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It was a cloudy cold Sunday in Minnesota so our family took to the beach. This is common for us. Many families of autistic children go to highly visited places on days with bad weather. Less people, less stress, less stares, and less chaos for our kids. I will be honest and say that if we get to an event, park, beach and there are a lot of people I instantly tense up. My little man is a mover and a thrower. He has no understanding of safety or social norms. And I know that the crowds are going to inhibit his ability to move around and be comfortable.

Wandering and Autism

Readers often ask why I can’t bring my boys to a beach, park or any other public place alone. The answering is…wandering and my son’s desire to isolate himself. In this picture above you see Cooper. He is wandering the shoreline. Behind him is Sawyer and his cousin. They are sitting and building a sand castle. (Dad is watching them.)

Cooper wandered this whole beach for an hour. He covered every piece of shoreline a dozen times. And I followed. Then he moved behind the beach to the park. And back to the beach. He never stopped moving for the two hours we were there. Sometimes I describe it by saying he’s busy…but really, that’s not true. He has no destination in mind. No task to complete. He just roams. I call him my free spirit.

Isolation

This behavior is tough on the mom’s, dad’s and caregivers. We follow behind watching out for danger and guiding our kiddos path. I often refer to myself as his shadow. Whenever Cooper does this I always snap a picture. I feel the isolation terribly in these moments. Family events are the worst. Picnics, reunions, family dinners. I can see my family and I miss my other son. I feel like Cooper and I watch the world from the outside. We wander and peer in every once in a while.

I always wonder why he can’t just sit down. I think about it a lot during the wandering times. It’s tough.

Carrying Our Disabled Children

Also, any people ask how we get around while we wait for our special needs stroller (the never ending saga). Coops will walk a bit but he is a runner, darter, and a non-straight line walker. In open, non busy, spaces we let him walk obviously. And we chase. But typically the stress or danger level will get too high and Coop’s will need to be carried. Yes, we are working on this in therapy.

Every walk ends with a 65 pound Coop on dad’s shoulders. Being up there makes Cooper feel safe and comforted and he grins from ear-to-ear. I just love this picture.

A huge shout out to the parents that are doing an amazing job. And also the ones that secretly wonder how they are going to be able to carry their disabled children for life. It’s a real worry for some of us.

More About Special Needs Strollers

Also, want to learn more about getting a special needs stroller covered by Medicaid? Click HERE to learn more. I go in-depth about the long-drawn out process our family is going through. We started this in February and it’s now almost July and still no stroller. We are getting closer though. It’s crazy to me that Autism is not seen as a physical disability by health insurance. I wish the people that deny my claims could stop over for a visit. I’ll give them a glimpse into my world!

Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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