School is over and summer is here!
It is during the summer that I am most aware of how much work teachers do. Teachers, we love you! But while teachers are enjoying their well-earned breaks, it is parents’ turn to fully guide our beautiful babies.
For parents of children with disabilities and special needs, summer can be extra stressful. All children do better with schedules, but for our children, schedules are an integral part of their ability to function.
Knowing the importance of schedules, I always panic around summer. Because as hard as I try, keeping a regular summer schedule is impossible for my family. So for the past three years, I tried hard, stressing out my kids and everyone in the house, to keep a “regular schedule.”
After what felt like years—but was probably four stress-filled days of trying to enforce a summer schedule—I gave up trying. Surprisingly, my child with autism didn’t break down. In fact, she thrived and flourished in new ways. I thought it might have been a fluke, so I asked other parents. Many had the same experience.
So, [pullquote]this summer, instead of even trying to replicate her rigid school-year schedule, we are intentionally allowing her the freedom to just be like other kids.[/pullquote] And, it has been successful! At least so far. We are still in June. Check back with me in a month!
But here are some of my tips for parents on how to do summer with children who have disabilities.
For my family, this means that we got rid of most “time-based” activities. We allow my daughter to stay up later than usual and sleep in. After a couple of days when she really pushed her limits with staying up late, she pretty much went back on a normal sleep schedule. When she wakes up naturally, not being rushed, her mood dramatically improves.
During the school year, she went to sleep at 8:30 p.m. and woke around 6:45 a.m. For the summer, bedtime is closer to 10:00 p.m. and wake time is 8:45 a.m. The same amount of sleep, just organized differently.
Having a disability means you have physical/mental limitations. As parents of children with disabilities, we spend the majority of our parenting trying to figure out how to help our child navigate the world by providing the tools they need. We can become “quick judges” of activities—making snap decisions about whether they are appropriate for our children physically, emotionally and socially.
But the truth is, a lot of the time, we can be wrong. I know I have been. I have learned the hard way that limiting my child’s opportunities to try new things can be more damaging than the activity I originally feared was too much for her.
I am not saying that they will be successful. But, neurotypical children aren’t always successful at things either. But they are allowed the right to try new things. That same basic right of childhood—the ability to try and fail or succeed at new things—must also be available to our children.
With the right accommodations, our children with disabilities can usually do the same things as other children. Right now I am trying not to have a heart attack while my sensory-sensitive child is learning how to swim. My husband and I debated if letting her try swimming, and getting water in her nose/eyes, might be too much for her and scare her from water permanently. But this experience isn’t specific to a child with disabilities; a lot of children don’t like swimming. My daughter wanted to try, so we allowed her the dignity of risk.
And that leads right into my next tip...
My husband and I are extremely nervous about my daughter swimming! After asking the swim instructor and program director a million questions, I still went and observed the whole class. I was terrified and wanted to be there if she had a hard time.
But my nervous presence did not help my child, it made her nervous and uncomfortable. One of the best things about having a high-functioning autistic child is her brutal honesty.
Halfway through her second lesson, while I was still questioning whether swim lessons were really a good idea, she said, “Mom, you need to leave right now. I don’t like it when you are here watching because I can’t concentrate on what the teacher and my friends are doing. You should go to Target or something.”
So, right now, I am writing this piece and fighting every instinct to go to the pool and “make sure she is okay.” At the same time, my daughter knows I am here for her if she wants me. She knows that if she doesn’t want to continue swimming she can stop. She also, as children often do, realized that a lot of my concern was a manifestation of my issues and not hers. So, she asked me to leave the pool and take my anxiety with me. She wanted to swim.
I’ve learned to think of summer as a different type of school or learning opportunity for my child. This is her time to hone her individuality, to take risks and to relax. These gifts are important for all of us. Everybody, including kids with disabilities and their parents, deserves to have a great summer vacation.