This article is the eleventh in a series from Jolene Philo about PTSD in children. Previously, children have been the focus of each post. In this article and the next, the parents of traumatized children will be front and center. Why? Because children with PTSD can’t advocate for themselves. They need us to be their voice when they are too small and too broken to advocate on their own behalf. This post discusses three skills parents must cultivate to be effective advocates for traumatized kids.
How to Become an Organized Advocate for Traumatized Children
Parenting children with unresolved trauma can be a challenge at home. And because their worlds extend beyond their family circles they can encounter trauma triggers at school, athletic events, church, and in the community that send them into a behavioral tailspin. Therefore, parents must become effective advocates in all those places. To do so they must be organized.
Advocacy generates a mountain of information and paperwork. Here are a few simple ways to make that mountain scaleable.
- Use a spiral or composition notebook to write down questions and log observations about how your child responds to triggers and stressful situations and to track behavior patterns at home, school, and social events. Take the notebook with you to all medical appointments, therapy sessions, and school meetings. With your observations in good order, you will be able to add to any discussion.
- Use a three-ring binder and file folder system for hard copies of paperwork related to your child’s school career, therapies, and medical interventions.
- Create and label electronic folders for emails and documents if you prefer computerized records. You can also use Google Docs to create your own forms and integrated calendars and schedules.
- Use your smartphone to take pictures of hard copy forms or calendars that you use for scheduling and email them to yourself. Then create email folders for storing them.
Several prepared tools are available if you don’t have the time or inclination to create your own. Here are a few of my favorites:
- Terri Mauro a list of downloadable forms for a care notebook that can be adapted for children with mental health care needs at the Make a Care Notebook about.com page.
- The Center for Children with Special Needs, a division of Seattle Children’s Hospital, also offers downloadable care notebook forms. They even have a version for teens that teaches them self-advocacy skills, responsibility, and organization.
- Tory Zellick’s The Medical Day Planner can be adapted for kids with mental health care needs, as can the phone app she created.
- The Caregiver’s Notebook: An Organizational Tool and Support to Help You Care for Others by Jolene Philo is a three-year planner that offers spiritual and emotional support for caregivers.
Whatever method you choose, remember organization is always a work in progress. So use what helps you at the time and ignore the rest.
How to Become an Educated Advocate for Traumatized Children
Effective parent advocates need to be educated as well as organized. You need to know as much about your child’s diagnoses and conditions as possible. Read books and articles about childhood trauma. Check out the resources they mention. Create Google alerts to keep abreast of information on the web. Use keywords like “childhood developmental trauma,” “complex trauma,” and “PTSD in children” to create alerts and have the results sent to your email inbox daily.
How to Be an Effective Advocate for Traumatized Children at School
Most of your advocacy efforts will be focused in two places: at school and in the medical community. To advocate effectively at school, you need to educate teachers, school administrators, and other school personnel about childhood trauma. Why? Because educators don’t yet understand trauma and PTSD. You also need to keep track of paperwork, attend every parent-teacher conference, and touch base with teachers weekly. Stay up-to-date with school rules and regulations and consider how they will affect your child. Be a team player and use open communication and teamwork to advocate effectively. If your child qualifies for special education services, learn all you can about special education law. WrightsLaw is a good place to start.
How to Be an Effective Advocate for Traumatized Children in the Medical Community
In the medical community, as in the educational system, advocacy begins with raising awareness about childhood trauma. You should look for professionals who take childhood trauma seriously. Before hospital stays or medical procedures, prepare your child ahead of time for what will happen. Talk to everyone so they are on board to prevent traumatic medical experience. Insist upon accompanying your children wherever they go in the hospital, as long as the child is conscious. Insist on being in the recovery room before they wake up. Take nothing for granted. Be ready to advocate from the moment your child enters the hospital until the moment your family goes home together.
Becoming an effective advocate for traumatized children requires persistence and patience. It also requires parents who recognize and deal with the stress that is part an parcel of parenting children struggling with PTSD. The next post in this series will offer parents ideas about how to manage their own mental health care.
Congratulations to Jolene Philo for receiving a “starred” review in Publisher’s Weekly (the top review publication in the U.S.) for Does My Child Have PTSD? A starred review means the book should get a second look from libraries, book stores, and other entities that can get it into the hands of families who need it. This is a truly special honor…this is the first such honor ever received by her publisher (Familius). Available at Amazon.