Thinking Outside the Box:
Education for Children with Chronic Conditions

by Colleen Rice

Last year we opted out of regular school to focus on my son’s physical and emotional health as top priority. After a year of over 12 hospital admissions (and just as many the year before), we decided he needed a break. He needed something different.

Thinking Outside the Box

colleenComing off of a horrible spring and summer with multiple hospitalizations, my son was in no way ready to start first grade, especially when the focus would be on his weakest areas, handwriting and reading. He’s a physically active, creative and playful BOY who needs to move. He’s also very observant and does not miss a single thing, which causes overstimulation very easily.

I could see how the school stage would be set: formal structure, high demands, and large class size. A large part of the day–no matter how you look at it–was going to be spent in groups where he would have to focus, follow directions and perform on cue. All that sounds great and normal, but in the last few years he’s spent a lot of time in a “quiet down” room, which was starting to affect his self-esteem.

For my kid, just dealing with his chronic condition, Cyclic Vomiting Syndrome, was hard enough. It was a struggle just to eat enough to maintain a healthy weight. Many people take for granted simple things such as eating a meal or drinking enough when healthy. Adding a structured school setting added a crazy amount of stress, which would tax his system and set him up for having many cycles of Cyclic Vomiting Syndrome.

My fear was that I should then just change my mailing address to the local hospital.

Instead, we decided to think outside the box and take him out of school. Our year out of school still had frequent hospital stays, but the length of time he was down each time decreased greatly. He’s actually happy, and he’s actually eating food enough to sustain him! He actually has balanced energy. Sure, he’s only starting to sound out words, but he’s in a good place and ready to learn now, where he would not otherwise be. He’s come so far with the goals that we did set for him.

Options for Education

Learning is all around us. As parents, we do need to advocate for our children, and remember that we are the primary educators. We have the freedom to make decisions about how, where and what our kids learn.

As parents of children with chronic conditions, we often have to get very creative in the ways in which this happens, and make many sacrifices to see that it happens. We may opt out of public education for a period of time to regain basic health. We may opt for a different style of learning in a different type of school. We may opt to stay in public school and fight for tutors and homebound education.

There are so many options out there, so it’s important not to feel boxed into only one choice. Also remember that your plan can be flexible and change as different needs present themselves.

There are so many options to try for education. Here are just a few:

  • Homeschool (parent led)
  • Homeschool Co-op (parents and other homeschoolers)
  • Homebound (school provides tutors and maintains records)
  • Online Schooling (Internet based learning)
  • Shortened Day or Traditional School with Accommodations (504 plan or IEP)
  • Traditional School (with no accommodations needed)
  • Private School

Now that my son is back to a more stable position, we are looking into a charter school that has more project and creative-based learning, both of which fit his personality more than the traditional school setting.

Accommodations for Children with Chronic Conditions

In many cases, children need adaptations or accommodations in order to be successful at school. Children with chronic conditions may need some of the following:

  • Reduced day to make best use of limited energy, or a gradual increase in school day length to adjust to full day.
  • Reduction in homework load or extended time to get it done, to enable kids to be able to get the rest they need and still have a quality life outside of school.
  • Ability to type rather than handwrite schoolwork and homework if hand weakness is an issue.
  • Snacks or water throughout the day.
  • Extended time to work on tests.
  • Advanced knowledge of projects so that things get done on time, factoring in the probability of a hospitalization that might disrupt the timeline.
  • Excused sick days to avoid truancy charges.
  • Rest breaks at school as needed in the nurse’s office.
  • Open communication with parents and teachers about warning signs of chronic disease flares.
  • A medical plan for the school to handle medical complications or emergencies. For my son’s condition, this means he is taken to a quiet dark place, we are called, and medications are given. School nurses, aides, or teachers must be trained to administer medications as needed.
  • Have a plan set up that after a certain number of days missed, the school will provide a tutor or help set up peer tutoring.
  • Get the name of at least one other student in the class for your child to communicate with about assignments.

Maximizing Learning

The key to ANY student’s success begins with excellent parent and teacher communication. It’s also key to remember that good health is a foundational aspect that so many teachers and students take for granted. Education is about more than test scores and grades. It’s about learning and personal growth and achieving skills. Do not let grades or state standards dictate what your child must learn or when he must learn it.

Often a child with a chronic condition needs to learn how to live with repeated hospital stays, which is both physically and emotionally draining. This can be viewed as a learning experience as well, because children with chronic conditions often become familiar with medical terms and treatments that other kids do not. There’s no state standard for that…but it’s often a very real part of our children’s lives.

To think differently is not about failing to keep the “norm.” It’s about working with what we have for the best of our children who live with chronic conditions. Do what’s best for the child, even if that means thinking outside of the box. I’d bet at least one kid with a chronic condition will become a doctor, and I’d bet he or she might be the one to find better treatments options for chronic conditions like my son’s Cyclic Vomiting Syndrome.

Author: Colleen Rice • Date: 7/16/2015

About the Author

Colleen lives in New Hampshire with her husband, Dan, and their six children, one of whom has been diagnosed with Cyclic Vomiting Syndrome (CVS) and has difficulty managing despite many ongoing interventions.Colleen has learned to balance (and sometimes juggle) raising all six of her children while giving unique attention to her often sick child with CVS. With the help of her supportive husband and her mother, Peg, she takes a team approach to keep things going as smoothly as possible.

In 2014 she published Rare But Not Alone, Raising Kids with Cyclic Vomiting Syndrome, which can be found on in print and ebook, to help other parents living with this rare medical condition. A children’s book on CVS is set to be released Dec 2015. She also is a founding member of CVS Speaks, a social media group raising awareness.

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