Doing It Together
This week in our Rare Family Dynamics Workshop we talked about the value of being on a team. We explored effective ways of being and what doesn’t work so well.
Processing the Diagnosis
When you first receive your child’s diagnosis, you might notice that you and your team have very different ways of processing it. You need to bridge the gap and bond together against the problem. It’s important to include your partner in the process of discovering what is needed for your child. There will be doctor’s appointments, rigorous medication regimes, G-tube‘s and more.
In order to grow a successful team, you let go of the thought “I know what’s best. “You approach it by saying we are in it together!
Be Intentional with Your Time
A relationship calls for intentional time and not just being in survival mode. Maybe you spend time at the end of the day on the couch watching a show or just talking.
It’s a good idea to have one to one time with your Neurotypical child. This might happen when you’re driving her to school. Remember, it’s important to schedule time with your family and not squeeze them into the time that’s left over.
The relationship with yourself also invites intentionality. Your self-care is a priority whether it means walking on your treadmill or doing yoga. When you take care of yourself you will be able to be more present with your Rare child.
Let Love Win!
Being on a team means noticing when you are falling into a dysfunctional pattern like dumping energy on your partner. You can step back, label the behavior and respond differently. You can’t troubleshoot an issue when you’re triggered.
Take some time to relax, interrupt the pattern, change your body language and your approach. Tending to your relationship and your team means you let go of your position and let the relationship win.
Sometimes this may mean going to bed mad. The majority of the time you’re mad or upset, it might be because you’re hungry and tired. Eat, rest and begin again.
Practice Acceptance
Being on a team means honoring your teammates' process. Trust that they know what they need. One of our rare mothers said it this way, “Don’t yuck someone else’s Yum.“ The Yuck is the judgment and the Yum is the way that they self soothe.
Coming up this week: Crossing the Bridge
When your Rare child is becoming less able to function no matter how many medications and treatments you give them, you are in a transition. This is what is called “crossing the bridge.” We will look at how to take care of yourself and your Rare family during this potent transition. Please bring your experience to share. You have wisdom that lives in you.
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 and 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. (Pajamas and unbrushed hair are a yes!)
Your presence is a contribution.
Zoom Link: Click Here
We look forward to being with you soon.
Warmly,
Padma
Meeting Quote: Mel Sabin (Rare Mother - 5P Syndrome)
"This might be the only good mediation experience I’ve had. Maybe I was scared of shutting off my brain before but it felt good this time. So thank you!"
