Updated: Jul 28, 2021
One of the lessons I had to learn very quickly while raising my medically complex son was no one cared more about his "success" than I did. That's not to say he doesn't have an absolutely amazing team of doctors, therapists, social workers, and support staff- because he does. This means that I was the one who had to ask questions, follow up, and push for services, tests, answers, evaluations, appointments, solutions, etc. Now a little housekeeping...
For those who are not down with the internet lingo, here is the actual Wikipedia definition of "Karen" : Karen is a pejorative term for a white woman seeming to be entitled or demanding beyond the scope of what is normal. The term also refers to memes depicting white women who use their privilege to demand their own way. I am in no way making fun of or wishing ill will to any person named Karen. Nor am I entertaining any debate or accusations of racism. Just needed to clear that up. Moving on. What the heck is an advocate anyway?
ad·vo·cate noun /ˈadvəkət/ a person who publicly supports or recommends a particular cause or policy.
Welcome to the world of advocating. (Insert strong tone of sarcasm here) You probably didn't see that in the fine print of the Parent Contract at the end of the comprehensive Parent Handbook you received when you became the caregiver of a child with above-average needs, but here you are! I believe there is a 100% chance you will need to step into your advocacy shoes at some point in your child's course of care. It is just a part of the journey, just as the sun rises every day.
Confrontation can be incredibly uncomfortable, but it doesn't always have to be.
From that noisy neighbor to the in-laws that just don't understand boundaries, our hearts start to pound and ears ring when we think about having those difficult conversations. In this post I'm sharing 7 tips that have helped me feel heard and seen while getting results that I felt comfortable with.
Put your feelings aside. The last thing you want is to carry all of your emotion into a professional meeting with providers. I absolutely understand the anger at the system, denials of referrals, misinformation, and tape the color of your boiling blood. I urge you to vent to a trusted friend or journal and keep your eye on the prize- resolution of the issue, NOT "winning" or "stickin' it to the man".
Identify the issue(s) at hand. Sit down with a piece of paper and write out your concerns. This gives you time to identify the root concern(s) instead of acting in frustration or exhaustedness (by the way- spell check says exhaustedness isn't a word but you and I both know it absolutely is). Your provider/teacher/doctor/etc. will appreciate you communicating clearly and concisely, plus it will be easier for you to remember the issue(s) at hand.
Come to the table with a solution or two. Nothing can kill a conversation faster than two parties who can't compromise. Identify a solution that would be your best case scenario and a compromise you are able to make that still meets the spirit of your issue.
Use neutral language. What you say is just as important as how you say it. If you come into a conversation feeling angry or frustrated those feelings will come through and flavor your meeting. Do your best to avoid blame and remember that everyone has the same goal: to provide the best care and opportunities for your child that are possible.
Keep a written record. You are a busy person. Your child's care team is also busy. By keeping a written record of conversations and/or emails, you're able to follow up on action items such as promises that were made, referrals that were sent, and services that may be denied (which can come in handy if in the future you are pursuing other services and they require documentation that service was not able to be fulfilled by another agency/organization/insurance).
Follow up. A kind "thank you" follow up phone call or email can go a long way. Even if you weren't able to resolve all of your concerns in one meeting, sending a quick "thank you for your time, I know you're incredibly busy and I truly appreciate that we were able to connect" can really turn around a working relationship. Additionally, you may need to check in with a care team member in a few weeks about a next step. Refer to your written record for your action item and reach out to the appropriate person to verify that steps have been taken to move forward.
Learn some key phrases to diffuse confrontation. (edited to add after initial post because apparently I can't count) Having a few phrases you know can give you the confidence to continue tough conversations. If you are sensing some frustration from the party you're talking to, try one of these phrases to cool it down:
I recognize your efforts and hard work.
Let’s work on this problem and fix it together.
Tell me more—I want to understand.
Let's see what we can do to make sure this doesn't happen again.
Is this list comprehensive and foolproof? Absolutely not, and that's ok. I can say, with full confidence, that advocacy is a skill and with practice it can be honed into a beautiful superpower. I'm here for you and we can do hard things.