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Summer Is Tough for Parenting a Child With Disabilities But It’s Also an Opportunity

Jul 6, 2018 12:00:00 AM

by ShaRhonda Knott-Dawson

As a parent of a daughter with a disability, I feel like I am in a perpetual state of learning tips from the “experts.” Having a child with special needs means I am always trying to do the right thing for her. But summer break is extra hard. During the school year, my child’s schedule is mostly predictable. School starts and ends at the same time every day and the daily schedule is clear. So for summer, “disability experts” tell parents to have a schedule and routine. Predictability is the key to disabled students having a drama-free, successful summer break. However, [pullquote position="right"]when summer comes, even the best and most organized parents have a hard time sticking with routines.[/pullquote] Summer vacation is not like the school year. During summer you have vacations, concerts and all the other wonderful summer opportunities. For me, I have found it impossible to create a “summer routine” that would work with our family. Instead, I have had to try my best to give my child structure day by day. The truth is, our summer isn’t predictable. No matter how hard I try, I can’t even keep a bedtime, wake-up schedule. Summertime means late-night park adventures, sleeping in and random napping, none of which helps maintain a regular bedtime. Luckily, unstructured summer time has also yielded some surprising benefits and growth opportunities for my child. So far our unscheduled summer has helped her build friendships, develop new skills and strengthen her ability to self-regulate. Summer has also given me more time to get to know her and to see my fears about her progress start to vanish.

Summer Friendships

A deep fear of mine is that because of her disability, my child won’t be able to develop friendships. School can make building friendships harder because it regiments everything by age and grade. So do most after-school activities. Summer is one of the rare times when kids get to play with other kids regardless of age. All kids, of all ages and abilities, are together, playing. For my child, with her unique set of challenges, this has been a godsend! Her vocabulary has improved! Her socialization skills have improved! But I am glad her speech is still a bit delayed, because she can’t quite say the bad words and phrases she hears from the other kids. She says, “Get the bell out of here!” or “Where’s the duck?” By next summer, I am sure she will have mastered the correct phrases. Lack of structure forces children to create fun. Traditional school doesn’t offer children a ton of opportunities to spend individual time just doing things they enjoy. My daughter’s sensory needs mean she loves playing in the dirt, sand and mud. She has loved creating towns made out of the mud in the backyard! Over the summer, because there is no time or classroom constraints, she can play in the mud to her heart’s content. The relaxed pace of summer has other benefits, too. Our bonding time is on our own schedule—we’re not struggling to beat the clock. Relaxed conversations naturally increase our daughter’s vocabulary. More play time means more exercise and more time to connect with family.

Spinning Time

Part of being a great advocate for your child means really knowing your child. I’m getting to know my daughter better this summer. For example, I’ve learned that she needs to have spinning time and that she has to decide the time. I am not sure about the science of her disability, but I know the most important thing is for her to self-regulate and understand what and when her body needs things. Our wonderful occupational therapist suggested we have “scheduled spinning” and other breaks for sensory time. At school and during the school year, we do these exercises pretty much at the same time and in the same way every day. But in the summer, as it turns out, she doesn’t really need scheduled sensory time. Her body has different needs and wants at different times. On vacation we have had “spinning time” at the mall, on the side of the road, in a restaurant, before bed, first thing in the morning, and we have even had a few “spin-free” days. So, instead of spinning every two and a half hours, like she does in school, we do it when she needs it. My daughter is learning how to control her body and, most importantly, when it needs controlling. She is also getting opportunities to practice her self-regulation skills in brand new settings. For example, my mom registered my daughter for a weeklong ranching summer camp. Of course, I was worried because they didn’t have special needs staff or even an awareness of her disabilities. However, within the first hour of the first day, I realized that my fears were unfounded. True, she wasn’t able to follow directions or sit still, but she didn’t need to! [pullquote position="left"]She was able to adapt because she has learned how to self-regulate.[/pullquote] When she is in school, she has a team of people to remind her to use her “tools.” But at camp I was able to see her calm herself. She used a variety of strategies: literally grounding herself by lying on the ground for comfort, using her headphones when it was too loud and even telling the camp counselors, “I needed a silly break for my body!” It was a golden opportunity for me to see my daughter self-regulate! This summer has been a wonderful learning opportunity for us, as parents. During the summer, we were able to be teachers for our daughter's "summer classroom." We have enjoyed this quality time, a lack of structure and its surprising learning opportunities. But we are very excited about school starting this fall and her return to her regular classroom. God bless teachers!
Photo by ESTHER, Twenty20-licensed.

ShaRhonda Knott-Dawson

ShaRhonda Knott-Dawson is the mother of two free-spirited, strong-willed girls and has a husband who should be appointed a saint for co-existing in the madness that is their life. She writes on politics, education, current events and social justice. She is also a taco enthusiast, a proud member of the Bey-hive, and truly believes that she will be receiving her letter from Hogwarts any day now.

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