Is Facebook Friend or Foe for a Special Needs Parent?
True confession: I spend a lot of time on Facebook. My husband and kids have made comments about how much time I spend on my computer, and they’re not wrong. However, I don’t think I use Facebook in the same way most people do. Sure, I spend some time following what my friends are up to, and I watch a funny video or two once in a while. But, for me, Facebook is primarily a ‘research’ tool. I spend the majority of my time on Facebook learning more about how I can help Julia, either now or in the future. I belong to at least several groups that provide support and resources related to one or more of the medical conditions Julia has, and I have created a complex system of saving and categorizing posts that I think might be useful someday.
With so much of my time spent trying to stay on top of or ahead of the challenges that have already or might someday impact Julia, I decided to think about whether or not the time and energy I spent on Facebook was a productive use of my time.
why facebook is my friend
Here are some of my conclusions: I am an information junkie, and it makes me feel like I have more control over difficult situations if I have some ideas about what to expect and how to face the challenge. And, while it is absolutely not a substitute for medical or professional advice, I have gained many, many valuable insights from the Facebook groups I belong to. My daughter is extremely medically complex, and even though she has an amazing medical team, she often stumps them. It’s then that I turn to my Facebook groups to find answers, or at least some clues about where to look for answers or strategies to try.
i gather and use the information from my facebook groups in several ways:
Before an important event,such as a doctor appointment or IEP meeting:
If we’re seeing a new specialist or facing a new situation, I’ve found it helpful to use Facebook groups to help me know what to expect and help me develop a list of questions to ask. If I have some information going in, the appointment is usually much more productive and informative. For example, we’re considering a trial of CBD oil, and I’ll turn to Facebook groups to help me create a list of questions to ask Julia’s neurology team at our appointment next month.
Asking questions about an acute or emergent symptom or event:
Again, Facebook is not a substitute for medical or other professional advice. But, if Julia has a weird symptom or is acting differently than her norm, posting a question in one or more of my Facebook groups can help point me in the right direction. For example, when my daughter broke her femur, other moms were able to give me some ideas about what to expect during the healing process and options for immobilization beyond a huge spica cast.
Building my knowledge base:
Following Facebook groups has exposed me to the creativity and ingenuity of other special needs parents, filling my mind with ideas and information that I can use to improve Julia’s quality of life. For example, I’ve found lots of great gift ideas from a Facebook group that’s focused on sharing gift ideas that are suited to kids with a wide range of disabilities.
my favorite groups
* A Very SPECIAL NEEDS Christmas (gift ideas)
* Home Hospital NOT Hospital Home (home and life adaptations)
* Mommies of Miracles (inspiration)
* Complex Care Cases for our children’s hospital (local resources)
* Blenderized RN (tube feeding a blended food diet)
* Aicardi Syndrome (Julia’s diagnosis)
how facebook can be my foe
Sometimes I get more than information and entertainment from Facebook. Here are the things I need to be careful about with my Facebook usage:
Comparisons that lead to envy: Most people put their life’s highlight reel on Facebook – the accomplishments, vacations and outings with friends. If I start comparing my real life with the ideal life many people portray on Facebook, I can lose track of my own blessings and start to feel envious. It’s much more productive to count my own blessings than to be envious of others’ good fortune.
Complaints that lead to frustration: On the opposite end of the spectrum are people who make a big deal about problems that seem pretty small from my vantage point. I have to remind myself that everyone has different perspectives and different coping abilities. And, you just never know what challenges they are facing in their private lives.
final verdict
Whether Facebook is my friend or foe depends on me and how I use it. As long as I focus on education, entertainment and inspiration – all in moderation – Facebook is an amazing tool for me. But, being pulled into comparisons can only lead to frustration and a lack of appreciation for my own different kind of special.
