I'm My Child's Best Advocate
As I look back on the years of being a caregiver for my two children with medical needs, one thing that is clear is that I had to learn to be an advocate and learn how to get the services and accommodations we needed even if it meant getting out of my comfort zone. The old saying that "The squeaky wheel gets oiled" is very true in many cases.
Consumed with getting the help we needed
From dealing with doctors and nurses to dealing with insurance companies and school systems, my days and nights were consumed with getting the help we needed. Alyssa received a heart transplant 17 years ago at age 8. Pediatric heart transplants were not common then and the guidelines, 'how-to' literature, and books had not yet been written. We did not have google and the internet to get information.
Working with a child psychologist
One of the most helpful things we did was to start working with a child psychologist. The benefits of having a professional of this nature onboard who could also advocate for my child and attend school meetings was priceless. A child with medical needs may need a 504 plan. A 504 plan is designed to ensure that a child who had disabilities or medical conditions can receive special accommodations that will ensure their academic success. The psychologist will be able to guide you on what your school district protocol might be asking for. A PPT (planning and placement) meeting is the first step to establish a plan that will protect your child.
School staff support
The teaching staff and school nurse will become your child’s lifelines while they are in school. We were very lucky to have a school nurse who was amazing in working with our family. The school nurse and I established a team approach to caring for Alyssa. We talked daily and put together a plan for Alyssa to take her medication, avoid illness in the classroom, attend field trips, receive emotional support, and address any other issues that came up throughout the school year.
Working as a team
We would navigate problems as they came up and worked together to find the best solution for everyone’s comfort level. Your child needs to be able to trust the person that is caring for them in your absence. It might be helpful to arrange some time to meet with the nurse at the onset of a new school year or if there is a change in school nurses. This will give you all a chance to get to know each other on a more personal level. Small children often have a hard time seeing school staff as "people" like their moms and dads. If the nurse can take some time to get to know your child prior to them working together it might be a valuable tool.
Finding a teacher that is a good fit
The school nurse can also be helpful when it comes to choosing the appropriate placement for your child with a teacher. They are a part of the staff and have inside knowledge as to who might be a better fit for your child’s needs. The nurse will also need to have a good working relationship with the child’s teacher. Not all teachers will be happy to have a child placed with them that require special attention. It requires a teacher who can adhere to special routines such as classroom hand washing, cleaning, monitoring classmates for illness, looking for trends in class absences, keeping track of the work your child has missed, sending homework that is missed, speaking to the nurse on regular basis, speaking to parents on regular basis, arranging for your child to get tutors, and adhering to any special accommodations that have been made for them.
A friend in each class
I found it was helpful for me to bring in supplies for the teacher to use on my child’s desk and set up a protocol with each teacher as to what needed to be done to keep her safe. I went in and spoke to everyone individually. I did not want to leave it to my child because I knew she was embarrassed to wipe down the desk and protect herself on her own. All the students knew she had the transplant and were anxious to help. We found a friend in each class that took on the job at the onset of the class. It gave her friends a chance to be helpful and she did not have to stress with feeling insecure or different when wiping down her desk.
A presence in the school
I also found it was helpful for me to be present at the school as much as I could. I would volunteer in her classroom as well as other places they needed me. This was a great way for my daughter and me to ease our fears of being away from each other and it also helped the teacher to know I was nearby if things didn’t look right to her. It gave me a presence in the school and the ability to keep my eyes on what was going on there. This was an added benefit to only receiving written updates from the teacher.
The more comfortable you will become
The bottom line in our case was that I had to be persistent in finding out what special accommodations were available to us. I was not offered information, I sought it out. It’s often uncomfortable to insist your child gets the help they need but you will learn to navigate the system and find the individuals that are best able to guide you in the appropriate direction. You will need to follow through and ask for help when you hit roadblocks. One time I reached out to our town's mayor who contacted the school on her behalf.
It's hard to not get emotional or feel defeated when we are navigating some schools policies. My best advice is that the more you do it the more comfortable you will become. Make that second, third, or even fourth call if that is what it takes. No one will be a better advocate for your child than you.
What type of heart failure have you been diagnosed with?