I started this post in 2021 when we were still searching for a new school for our son. We found a new school and moved out of the city since then, but I wanted to share it because the sentiment remains true. There are always trade-offs.
We make trade-offs every day. Any time there is a limited resource, like time or money, we have to choose how to spend those resources. I could spend my morning writing, or I could get more sleep. I could buy a new car, or I could go on vacation.
Sometimes, there are factors involved that help us make a choice. If I didn’t get a good night’s sleep last night and I didn’t want to be miserable all day, I might choose to use that block of time to get more sleep. If my car is falling apart and I need it to get to work, I might choose the new car over a vacation.
Trade-offs may defer some choices. I might need to buy that new car now, but I can save up and take the vacation later. But they could also mean giving up one choice completely.
Every situation is different. At different times, different things take priority. Maybe you’ve been cooped up too long and decided to take a vacation rather than buy a new television. Perhaps you like to travel a lot, so you live in a smaller apartment or house.
Wealth and income play a big part in whether or not there is a trade-off, and it changes the scale at which those decisions need to be made. If I had a million dollars in the bank, I could likely get the new car and go on vacation. But if I have nothing in the bank, maybe I can’t choose either.
And then some situations might feel like trade-offs, but they aren’t. We’re exploring schooling options for my son because his previous schools couldn’t accommodate him. Virtual learning is taking a much bigger toll on him than we anticipated, so we are once again looking at in-person schools. But the ones that can accommodate him and his needs are private schools which cost as much as going to a good college every year.
On the one hand, we can use some of the money we would put away for him to go to college now to cover some of the costs. But that means he’ll have much less money down the road should he eventually go to college.
Or it could mean making trade-offs in other areas. One thing we like doing as a family is taking vacations. Last year, we were fortunate enough to go to Maine a few times. When the world was open, we visited friends and family in Colorado.
I realize how fortunate I am to be talking about deciding between a private school and college or vacation. There are issues of equity and equality that are pervasive around the world that affect the choices we have and our ability to choose. I know there are families out there making much more difficult choices, like deciding between medication and rent or groceries. They are deciding between the quality of the education for their children and their quality of life. No one should have to say things like:
“Sorry, buddy, we can’t do this thing you really want to do because we have to pay for your school.”
“We can’t have this nice thing because we have to pay for your medication.”
When you are a family that has a child with special needs, more things are a must. Medication, including some that insurance doesn’t always cover. There is the cost of insurance itself, and therapy, and special equipment or food, not to mention enough time and support to be able to go to work and to doctor appointments.
We end up not only dealing with a medical condition that we weren’t prepared for and all the complexity and fear that comes with that, but also juggling these new tradeoffs and limited resources. It’s overwhelming. It’s neverending. It’s easy to feel trapped.
There is no easy answer. We’re almost eight years into our epilepsy journey and, while we may have normalized aspects of this life, we don’t have it figured out. We can’t. Things keep changing, and we keep making choices based on where we are at that time, and hope we make the right one.
There are no solutions. There are only trade-offs.Thomas Sowell
While there is no easy answer, there are a few resources that we’ve found along the way that I wanted to share that may help you feel a little less trapped. If you have any resources that you’d like to share, please do so in the comments below.
Disclaimer: I am not a lawyer or a financial or tax expert. Please consult a professional or the organizations listed if you need advice.
Child Health Insurance Program (CHIP) – Not available in every state, but can act as secondary insurance. Although it also serves no- and low-income families, some programs provide assistance based on the severity of the medical condition, too. The Pennsylvania program has an additional benefit of reduced admission to museums and other cultural events. https://www.medicaid.gov/chip/state-program-information/index.html
ABLE – Tax-advantaged savings program for individuals with disabilities. Similar to a 529, but can be used for more than just education. Depending on the state, contributions may be tax deductible. https://www.ablenow.com/
National Organization for Rare Disorders (NORD) – We had a hard time getting a new medication covered for our son, and NORD had an assistance program that helped us out. https://rarediseases.org/for-patients-and-families/help-access-medications/patient-assistance-programs-2/#section-1
Epilepsy Foundation – A lot of resources. Check our your local affiliate who can provide resources and support groups for your area. https://www.epilepsy.com/