Navigating Summer Plans for a Child with Mental Illness: Pools, Popsicles, and Paying for Special Needs Care

Posted by Liza Long on May 25, 2018 11:30:03 AM

AdobeStock_119166988My youngest daughter turns 13 in a few weeks. For the first summer in ten years of balancing work and motherhood, I don’t have to worry about the one expense that rivaled my mortgage: summer daycare. Many parents look forward to the day when their children will be old enough to supervise themselves—or even babysit other children—during summer days. But for parents of children who have mental illness, it’s a different situation. While I no longer plan summer daycare for my soon-to-be 13-year-old daughter, there’s no way I would have left my son Eric, who lives with bipolar disorder, home alone at the age of 13. He would not have been safe.

For three of my children, planning summer activities was challenging—but it was something I could do, with enough savings, budgeting, and research to find the right fit for their skills and interests. My children and I enjoyed looking through the variety of community camps offered by places like the Boise Zoo, the Discovery Science Center, the Cabin Literary Center, and our local YMCA, where my oldest son, now a college junior majoring in astrophysics, spends his summers directing the STEM day camps he once enjoyed.

For Eric, especially during the years we did not have an effective treatment for his undiagnosed mental illness, finding appropriate summer care took on a whole new level of existential angst.

One of the biggest challenges that children with mental illness face in the summer is a sudden loss of their structured environment. For children who have sensory issues and/or challenges in self-regulating their emotions, an unlimited stretch of free time can be completely overwhelming. But unfortunately, many traditional summer activities like the camps I described above are not designed with our children’s needs in mind.

I didn’t always make the right choices for Eric, especially in the beginning. Constrained by budget in my first few years as a working mother, I chose to send my children to a “no-frills” subsidized program at a local elementary school. The staff were kind and caring, but they weren’t trained in how to deescalate Eric or help him to manage his sensory issues, which only increased as Eric approached his teenage years.

Ultimately, what worked best for Eric was finding an adult caregiver who could make sure that he was safe.  I was incredibly fortunate to find a young man who was in his senior year of college, working on a bachelor’s degree in psychology. Adam also has a younger brother who lives with autism, so he knew how to help Eric to self-regulate. I sent Eric’s siblings to the camps they wanted to attend, though, because I felt safer knowing that the children were separated when they were not in my care.

I also got Eric a phone when he turned 13 so that he could contact me if he needed help. For Eric, the phone has been a powerful tool, helping him to manage his executive function deficits, to remember appointments and medication, and to communicate despite his dysgraphia. The summer that he turned 16, he was managing his condition so well that I let him stay home alone (but again, not with his siblings) during the day. Adam checked in on him to make sure he was okay. I was fortunate to have an employer who also let me bring Eric to work with me on days when he needed more attention from me.

None of this is cheap. One important financial consideration in planning your child’s summer care is to remember that if your child has exceptional needs, you may be able to use pre-tax Flexible Spending Account (FSA) dollars to pay for a caregiver, even when your child is older than age 13. https://www.1040.com/tax-guide/health-and-life-insurance/fsa-qualifying-expenses/ I used FSA funds to pay for Eric’s caregivers. For advice specific to your situation, consult your tax professional.

Last summer, when he was 17, Eric applied and was accepted to the Idaho Youth Ranch Youthworks program, which was designed to help teenagers and young adults with life or mental health challenges learn job skills by working under close supervision in a thrift store retail environment. And this summer, he plans to work again as he saves for college in the fall. In fact, this summer, it’s Eric’s siblings I am worried about! Teens still need support and challenges in the summer months. My younger children, both teens, plan to create their own camps, where they work on skills like Photoshop, guitar playing, and of course, Minecraft.

While providing enrichment activities during the summer months can be a challenge for any parent, for children with mental illness, a safe and structured environment is the key to summer success.

*Looking for summer care options in San Antonio? Below are two different programs for children with special needs and mental health concerns:

Liza Long

Liza Long is a writer, educator, mental health advocate and mother of four children, one of whom has bipolar disorder. She is the author of the essay “I Am Adam Lanza’s Mother” and her book, The Price of Silence: A Mom’s Perspective on Mental Illness, won a 2015 “Books for a Better Life” Award. Liza advocates for mental health care on national level and regularly contributes to Huffington Post and Psychology Today.

The opinions, representations and statements made within this guest article are those of the author and do not necessarily reflect those of One in Five Minds or Clarity Child Guidance Center. Any copyright remains with the author and any liability with regard to infringement of intellectual property rights remain with them. One in Five Minds and Clarity Child Guidance Center accepts no liability for any errors, omissions or representations.

Topics: Inspiration, Getting Support, Insurance Funding Issues, Parenting Kids With Mental Illness

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