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What Summer Is Like When You Parent a Child With a Disability

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Editor's Note

This story has been published with permission from the author’s daughter.

Summer can be a time of rejuvenation. A time for rest, relaxation, catching up with friends and family and vacations. At least that is the perception. If you are a parent of a school-aged child with a disability, summer can be a high stakes time of reassessing, filling the gaps, recovering from what was most likely an exhausting year of advocacy and laying the groundwork for the upcoming school year.

Summer plans begin several months before summer actually begins as parents of children with disabilities start checking in with one another about the best therapeutic camp options, extended school year (ESY), booster therapy sessions and more. For kids with autism, unstructured time can be incredibly difficult and there is mounting anxiety for parents and kids alike to fill the time wisely, hoping for continued enrichment while recognizing the very real need for rest and decompression.

Over the years, we have made a myriad of decisions for what would be best for our autistic daughter. In our former community of Davis, CA, almost every camp starting at age 7 required that a child be able to ride a bike. For our child, that meant that almost every camp was inaccessible and therefore we needed to find other options. We were always faced with striking a balance of maintaining normalcy while providing some respite from what was almost inevitably a tumultuous school year. We continued all outside therapies and attempted local camps that didn’t require bike-riding. We went to the local pool and spent many hours at home alone trying to regroup and reorganize. As Magda has gotten older and we relocated to the Bay Area, we have attempted therapeutic camps, enrolled in ESY, maintained therapy appointments, done reading and math instruction at home, established “home goals” for behavior and learning, and reached out to next year’s professionals to try and set her up for success.

The myth that an older child can become more self-sufficient and therefore easier is elusive in our house. At 13, unstructured time is still a daunting challenge for my daughter. Filling that time with some semblance of meaningful routine holds more importance than it did when she was younger. Currently we are working on self-advocacy skills and helping her cope with her rigid and sometimes unyielding perspective. I’ve spent more hours than I can count talking to professionals and similarly situated parents brainstorming the best ways to help stretch my daughter, to help her build skills and find her voice. There is now a sense of urgency I feel and summer is no time to waste.

As a girl on the spectrum, she is often misunderstood and those around her make many assumptions. Because she is bright and compliant, she is often overlooked and the consequences are real and potentially harmful. What I have forgiven or been patient with in the past, I no longer feel I can be. So, I found myself sending the following email to her new school counselor the other day, because I cannot wait for them to figure it out on their own.

“Magda lacks a strong voice. She rarely, if ever, advocates for herself and like many kids on the spectrum, holds a shaky foundation for truly understanding that no one can read her mind. There is a level of expectation that those around her, particularly adults, should be able to read her nonverbal signs and respond accordingly. If a trusted adult missteps, she finds it almost intolerable. She is incredibly bright and curious, sees patterns in everything, has a good sense of humor, wants social interaction, and is incredibly kind. But she processes the world at her own speed through a somewhat rigid and literal lens. The social world, although alluring, often confuses her and she grasps onto rigid social rules that aren’t necessarily appropriate to try and make sense of a world that moves a bit too fast for her.” 

Magda is entering high school this year, and although I would have loved to enjoy a carefree summer enjoying downtime with my kids and the respite from work, I have spent every day working with Magda on math, reading, exercise and social interaction. She begins ESY next week and we will find out if the work we’ve done the last few weeks have been enough to help her recover from a stressful school year and readied her for being back in a classroom.

I know I am not alone in this. Summer for so many of us has a sense of urgency. How do we help maintain skills so they aren’t lost or forgotten? How do we maintain connection to community? How do we create opportunities for new growth and access to new learning opportunities? And how, without compromising any of the above, do we allow our kids to have that necessary downtime; to have a summer, to just be?

I don’t have the answers, but I think this a narrative playing out in many more households than just my own and therefore felt it necessary to say out loud. Not all summers are what we see on Facebook and Instagram of shining, happy faces of those on vacations to the beach and Disneyland. Some summers are about getting things done, being proactive, advocacy and recovery.

Getty image by Primorac91

Originally published: July 5, 2019
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