Being Seen & Heard
This week in our Rare family dynamics group, we talked about what it’s like to be fully seen and heard by another person. We examined the causes of miscommunication, and how it feels when someone is dismissive. What happens for you? Do you speak up and tell the truth about your experience or do you stuff it down and feel resentful?
Tending to yourself
In your relationships, the first thing that you can do is practice self-compassion. The second is to interrupt your reactive habit patterns and set boundaries around what doesn’t feel good.
It’s unrealistic to expect your elderly parents to change. You can change on the inside. You can also tend to your grief. You may feel the pain of not being seen and heard by your parents as a child, as well as in the present time.
Be compassionate with yourself and others. As your compassion grows so too will your acceptance of what is.
Drink in the goodness
Although you may not be able to be seen and heard by your family of origin, there will be moments where you do feel fully seen and heard by friends or community members.
These are the moments where you can receive a kind of essential nourishment. Pause, take a deep breath and send this delicious ambrosial feeling to your younger self. Your younger self will appreciate it. Sometimes in life we receive healing from our family of choice rather than from our blood family.
Gracefully navigating changes
You may realize that your Rare child or children do not do well at big family gatherings. How do you transition out of attending these? Gradually. Notice if you are feeling guilty and forgive yourself. Trust that you are doing what is needed. You may notice new disruptive behaviors that arise in your Rare child from being at a stressful family gathering.
How do you communicate with your family members? Perhaps you create some agreements for how they will manage their neurotypical children. Sometimes this works and sometimes it doesn’t. They dismiss your request and say, “that’s just typical kid behavior, relax.”
What you can do: Control what you can and make the appropriate changes to support you and your Rare family.
When the people around you don't understand
One of our group members lives in South America and her daughter does not have a diagnosis yet. The people in her community don’t understand what’s happening and make suggestions for her to take her daughter to see the “witch doctor.” They don’t understand her family’s choice to seek treatment in the US. In some cultures. The idea of a Rare family is completely foreign.
Remember, you have a place in this community. This is a community where people understand you, and understand what it means to live in a medically impacted family.
Coming Up: Full-time Care: Your Needs Matter Too
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 may lose touch with work contacts and feel isolated. You have less time for yourself and the relationships with your partner and other children. Creating habits and routines can be helpful.
Life can be stressful and it’s important to recognize you have needs and they are important. When your needs go untended, your capacity to care for your Rare child and family will suffer. In this session, you will learn how to discern what you need and practice the building blocks for making skillful requests.
You Belong Here
As a Raregiver, you belong here. We gather from across the world to support each other. You are not alone. Come as you are.
Your presence is a contribution.
Zoom Link: Click Here
Looking forward to being with you,
Padma
