Speaking up takes courage
Speaking up can be scary. In order to trust yourself and speak up, you need to feel grounded and confident. In today's Rare Family Dynamics Support Group we talked about what it means to be seen and heard and how often raregivers do not feel seen and heard.
Take a stand
Have you ever been to a doctor's appointment and felt like they weren't listening to you? Or maybe they weren't talking to you?
One of our participants shared how these kinds of doctor’s appointments were easier when her kids were younger. In Oregon at age 15 kids are allowed to be in charge of their own medical care.
This means as teenagers they get to make their own decisions. (Whaaat?)
This adds a whole confusing layer to the doctor’s appointments. When the doctor looks at your Rare child and not at you, and then your child looks at you because they are completely baffled by what the doctor is saying, you need to speak up. Just because the Oregon law says that a child can make their own medical decisions once they are 15 years old does not mean that they are capable of doing so.
It can be really intimidating to speak up at a doctor’s appointment and you can learn to do it.
Here are some things you can do to get your needs met:
Send your doctor a message through the portal and say something like, "I didn't feel like we finished this conversation. I still have a few questions.”
Pause the doctor during the appointment and say, "I need a moment to absorb this.”
It's important to advocate for yourself and your rare child, so what if you message your doctor ahead of time and let them know that when you meet with them, you would appreciate that they talk to you as well as to your Rare child.
Capacity
Be honest about your Rare child's capacity to comprehend what is happening. For instance, if you have an adult Rare child, who is 42 years old, and they are in an appointment with a neuropsychologist, it's important to let the doctor know that they are incapable of responding to psychological questions. They might even play and think that a question like, “Do you hear voices in your head?” is a joke. Your Rare child has issues and being schizophrenic is not one of them. Communicate to them that your child, although they may seem like an adult, actually has the maturity of a four year old.
A practice to support you
In life, one of the most nourishing things is to be seen and heard. A simple practice, for this is for you to say to the people in your life, "I see you." Take your time and make sure that the person you are saying this to receives it. Taking a couple of deep breaths is helpful for receiving. Do this practice consistently and see what happens.
Lean in
Communication is a high art form and leaning into uncomfortable conversations, especially with professionals can be scary and even more so if you were someone who is conflict avoidant.
However, you are worth it. Take the time and recognize when something needs to be said. Trust yourself. People will be able to hear you when you say it from the heart with kindness and clarity.
Coming up this week: Stage 4 Full-time Care - Recognizing and Asking for What You Need
When your Rare child is in need of full-time care, your life changes drastically. You may need to stop working or increase your work hours due to greater financial demands. When you stop working, you also lose touch with work contacts which may lead to isolation. You have less time for yourself and your relationships with your partner and other children. The stresses are many. Join us for a rich discussion.
Join Us
You may not realize how much you need the Angel Aid community until you find it.
Zoom Link
https://us02web.zoom.us/j/88974713173
We look forward to being with you soon.
