Additional Needs

Advocating is a Full-Time Job

Posted by Jennifer Arnold on 1st September 2020 Additional Needs, Advice & Support, Disabilities

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I’ve been a stay at home mom since my daughter was born almost 14 years ago. I had to quit the job I had at the time because she was medically fragile, came home from the NICU with a mountain of medical equipment, and no daycare would take her.

It was not a decision I took lightly; I did it out of necessity, and we took a devastating financial hit that took years to bounce back from.

As my kids got older and life calmed down a little, I started freelance writing as a part-time gig, and even though I hope to grow that business, I have since realized that I have a full-time career. It is one that I neither wanted nor asked for, but I have over a decade of experience, and I’m damn good at it. I realized that being an advocate for my kids is just like having a full-time job. It doesn’t pay- in fact, many times, it costs me money, but the benefits can be rewarding.

Advocating means spending hours on the phone with doctors, specialists, insurance companies, and medical supply companies. Making appointments and trying to navigate the red tape that often comes with insurance covering whatever your child may need. Ordering supplies and doing follow-up calls when needed supplied don’t arrive or are backordered.

Advocating means doing hours of research and note-taking, sometimes late into the night, seeking information that will help your child reach their full potential.

Advocating means being an organization wizard, keeping binders of notes and records, all color-coded and procrastinating putting it all on a flash drive for safekeeping (or maybe the flash drive part just applies to me!)

Advocating means going over your child’s IEP with a fine-tooth comb before signing it and taking notes at each meeting. It also means building a relationship with your child’s educational team as best you can, because these are the people who are most likely going to be spending almost as much time with your child as you are.

Advocating means education- in our case educating everyone from friends to medical staff about the condition my children (and myself) have, as it is very rare, and they are unlikely to meet anyone else with it.

I used to be painfully shy growing up. I would literally hide behind my mother’s legs when someone would try to speak to me, but in advocating for my kids, I found the voice I never knew I had.