Leading From Your Center
Rare Family Dynamics are complicated and even more so since they include communicating with your extended care team. Communication is a high art and can be quite challenging. You are the expert and no one knows your Rare child as well as you do. You are the head of your care team.
Communication
As the primary caregiver, you communicate with extended family members, medical professionals and your community. One of the things that you need to communicate is how others can specifically support your Rare child. People simply don’t know what they don’t know. Education is one of your primary responsibilities.
Community Integration
One of our regular group members spoke about her 30-year-old daughter who lives at home and works in the community. Because of her work in the community, she is integrated. This young lady was in regular education throughout her life because her mother advocated for her.
Her mom spoke about both expressing her needs and smoothing out any waves. She offered this wisdom regarding things to ask for when sitting at the IEP table. She said, “Bring things to the table that you don’t mind leaving without.“
Bring the goal and not the path. It’s important to be relaxed rather than rigid about how you will get there. The point is to agree on the collective goal which is to provide the best support possible to your Rare child. Being sensitive, strong and diplomatic will serve you well.
Be Kind and Caring
Another of our Rare caregivers talked about building rapport with the people at your Rare child’s school. She mentioned how kindness and caring are key. When you endear yourself to the right people and then when you ask for something, you’re much more likely to get it. You can do things like volunteer at your child’s school or give gift cards to the teachers at the end of the year. When you do this, teachers will pay more attention to your Rare child. People help the people they feel most connected to.
Be a Project Manager
Another woman in our group shared about how she thinks of herself as the “project manager” of her son. She gathers professionals of all kinds to work together to support her Rare family. It is as if she is the axle and they are the spokes of her bicycle wheel. She leads from the center.
A Practice
One practice you might do is to stay grounded in the center of yourself as you lead from the center of your bicycle wheel. Lead with kindness and receive the goodness that comes. Operate from your intuition and have systems to support you. Find your center through daily quiet moments, gentle walks, prayer or yoga. The little moments add up.
Coming up this week: The Value of Being a Good Leader: Team Play!
Being in a Rare family means you are on a team and share a common vision and goals. This includes relationships with your partner, children, healthcare professionals, friends, co-workers, etc. We will explore the elements of a great team. How can you be the best team player possible? What does it take to lead your team? In order to support your Rare family and your Rare child, you need to have a healthy team. Please bring your experience leading your family.
You Belong Here
This group is open to all Rare caregivers regardless of gender or relationship status. Join our amazing community of Rare caregivers who get you. Come be seen, heard and deeply understood. Let the community hold you. We meet on Tuesdays at 10am PT. Come for all or a portion of the session.
Come as you are.
Your presence is a contribution.
Zoom Link: CLICK HERE
We look forward to being with you soon.
Warmly,
Padma
Meeting Quote: Phyllis Reeusche (Rare Mother - A leukodystrophy -Batten Disease)
“Angel Aid has trained me to change my negative thoughts. I can choose to enjoy something out of every change that happens.”
