Despite the longer days and warmer weather that come with summer, many parents of school-age children find themselves with a host of new worries. They wonder how their children are going to keep busy and, if they’re working parents, how their childcare situation is going to shake out. But if parents of typically developing children feel anxious, then we special needs parents feel something closer to a heavy ball of doom in the pit of our stomachs. For families like mine, summer can be a nightmare. Why? Let me count the ways.
First of all, there is the difficulty of finding any kind of appropriate activity to pass the time. My daughter, JJ, has multiple disabilities. She is unable to walk on her own, use her hands, or speak without an electronic device. It's not likely she would be able to take swim lessons, participate in a sport, or attend a camp that wasn’t specially adapted for children like her. And if we are lucky enough to find such an activity, it’s likely expensive, far away, and requires me to be highly involved. Often, it’s just easier, and much less stressful, for us to stay home.
Instead of these typical summertime activities, families like mine often end up trying to pack in more medical appointments and therapies. I don’t want my daughter to miss too much class during the school year, so even though I know it’s going to add to our summertime woes, I schedule whatever I can during June, July, and August. And trust me, there is no shortage of things to schedule. In addition to attending a specialty clinic in a city four hours away, JJ also sees five different specialists locally. At least once a year, she also needs new leg braces and specialized shoes, which require multiple appointments for measurements and fittings. And those are just the medical appointments; JJ also undergoes multiple therapies. She sees a speech therapist every other week and does bursts of physical, occupational, and feeding therapies. When do most of these bursts happen? You guessed it. In the summer.
The reason families like mine schedule extra therapies during the summer isn’t just so she’ll miss less school. It’s also because of the effect summer has on our children’s development. For their typically developing peers, summer is a time for rest and relaxation, a break from the school year. But while these children often fall behind on academics, special needs children like mine can lose ground on things like walking, talking, and feeding themselves. Without the regular therapies built into her school day, JJ is in danger of falling behind on many of her vital skills. Children with neurological differences like autism have their own set of issues. Often, these boys and girls thrive on structure and routine, and the changes that summer wreaks on their schedules can be brutal.
Families like ours have still other risk factors to contend with during summertime. Many typically developing children love to spend time at the swimming pool, but for children like JJ, who have physical disabilities and epilepsy, the pool can be a dangerous place. The normal risks associated with higher temperatures can also intensify. My daughter is vulnerable to heat and prone to dehydration, so hot weather raises her already high seizure risk. It’s usually better to stay inside, no matter how boring and lonely that feels.
This brings us to another reason summer can be challenging—isolation. Because it is difficult and sometimes even dangerous for us to be out and about, we often choose to stay home. As mentioned earlier, there are few activities available to us. So when we’re not running around to extra therapy sessions or medical appointments, we’re in the house. By ourselves. Just doing…not much of anything, really.
Given these circumstances, it’s hard for us not to feel resentment toward the people in our lives who are enjoying summer much more than we are. JJ has to sit by and watch her older sister attend Girl Scout camp, swim lessons, and playdates. Meanwhile, I listen to my friends describe camping trips, outings around the city, and family vacations. My own family has decided to avoid any non-essential trips because traveling with JJ is so stressful and complicated. By the time we have packed all of JJ’s medical equipment (speech device, wheelchair, special needs stroller, gait trainer), pharmaceuticals (a dozen daily medications and the necessary syringes), and feeding supplies (feeding pump, feeding bags, pump charger, liquid formula), my husband and I just want to drink a margarita and take a nap—not spend hours on the road.
By now, it should be clear why summer creates such a significant burden for special needs families. But it’s worth mentioning that this burden is more pronounced for the child’s primary caregiver. In our family, that’s me. So, in the summertime, I’m the one scheduling appointments and therapies and finding ways to fill the rest of the time. This means I’m lifting and carrying JJ and her various pieces of heavy equipment even more than usual. By the end of the three months, my neck and back have taken a beating. If I want to alleviate any of this load, I have to find, interview, and train reliable and trustworthy helpers willing to work for the low rates paid by our insurance. As you can imagine, these are time-consuming and difficult tasks.
The summertime struggles I have listed in this post are ones many special needs families face every year. Unfortunately, I don’t see these problems going away anytime soon. So, until August rolls around, I’m going to do what I imagine many other parents like me plan on doing—just trying to survive. Soon, I’ll be counting down the days until school begins again. Because only then will I truly find relief from the enormous caregiving burden that’s about to settle on my shoulders.
What are your thoughts about the summer? Do your worries and responsibilities change significantly at this time of year? Please let me know in the comments below.