Notes from the parent advocacy workshop – my goals

I’ve been going to a workshop on parent advocacy skills. One of the sessions was about assertive communication: giving yourself permission to express your feelings and ask for what you want in a respectful, confident, and specific way. I’m familiar with the techniques (I statements, active listening), but it’s always good to practice and to see how other people might handle a situation. It also got me thinking about what I do want to learn when it comes to advocating for A-, and how to make the most of my strengths and work around my weaknesses.

I think there’s often a lot of leeway in how to solve a problem, especially if you try changing perspectives. Just like in tech, some ways are much easier and some ways are much harder. It’s easier to work with a system than against it. Asking different questions opens up other possibilities. That’s been my experience with tech. Human-centric fields are even more fungible. If you can get people to want to help you, they can bring their creativity and resourcefulness to the table. Conversely, if you get on someone’s bad side, they might drag their feet, or they might follow the letter of the law but not the spirit of it. And you can’t just keep testing until something works!

To make assertive communication easier, I like doing my homework. I research the possibilities and the trade-offs so that I can make better decisions and ask for specific things. I like knowing alternatives and having backup plans, because that takes the pressure off. I like reading policy manuals or getting the inside scoop from people because that gives me an idea of the structures that people work in, what tools are available to them, how they’re evaluated, what makes their day better, what makes them look good to their boss. I find systems fascinating, even when they don’t work perfectly well. We’re going a little outside the mainstream for a number of things, so it helps to know what’s out there and how to support any exceptions we want.

I’m working on getting better at dealing with different communication styles. Fortunately, this is rarely a problem. I minimize encounters with aggressive people, and I’m pretty comfortable disengaging from things I don’t like. I’ll dig into conflict resolution a bit more when I run into things I don’t want to work around, but in the meantime, there’s so much potential in yes-es that I don’t have to chase after any no-es.

Rather than conflict resolution, I mostly want to focus on understanding the systems here. What resources can I draw on? What’s easier and what’s harder? How can I work around any bumps? How can I give back and make things easier?

For A-, here’s what I anticipate needing:

  • tools to help me catch any developmental delays or learning difficulties, since early intervention pays off
  • minor accommodations in school: how to deal with the prosthesis if it’s out of her eye, seating adjustments, not sharing reading materials, eye protection and other safety precautions, possibly alternatives to ball sports (or realistic expectations for performance), help with social integration, and so on
  • good relationships with doctors, nurses, teachers, librarians, and other professionals

Based on the stories of other people in the microphthalmia/anophthalmia support group, it’s possible that she’ll enjoy school and develop a great sense of humour about her eye, but it’s also possible that she might have to deal with rejection or even bullying. I’m looking forward to learning how to work with or around whatever I can.