Talk To The Bus Driver
Our Tuesday morning Rare Family Dynamics sessions continue to be deeply nourishing. This week the topic was noticing changes and the self-care practices we use to stay connected to ourselves as we notice the changes in our rare child or children.
Acknowledge yourself
One thing you can do to stay connected to yourself is acknowledge your capacity. It's important to acknowledge what you are doing and what you can do. As they age, perhaps your rare child reaches a point where they need more care than you can give. It may be true to place them in a home where they can be cared for by professionals. What’s true is what is best for you and your rare child because you have needs too. Recognize all that you have done and surrender to the fact that they may need more care than you can give them.
Navigating unknowns
For those who still have children in school, you will be navigating the unknown of a new school year. Things like talking to the bus driver and letting them know that although they cannot speak, your rare child knows where they live. You are your child’s primary advocate. A powerful phrase that one of our participants uses is, "I am not going to be quiet." The reality is the squeaky wheel gets the grease. Remember don't take No for an answer.
Stay calm as you communicate
Practice being calm. Practice pausing in the space between stimulus and response. Be grounded and focus on where your feet are at this moment. Staying present and calm will help you communicate effectively. People will listen to you more when you're calm than when you are in reaction.
Dignity of Risk
It's important to give your rare child the chance to take risks. Recognize that even if they are cognitively delayed, they can still learn.
Everyone needs boundaries and they just look different for rare children. Give them a chance to learn things. It's important to know when to intervene and when to let your rare child act independently.
Advice from one of our Raregivers™, "Open yourself up to their learning process, and let them fail.”
Let them stretch and grow. As they stretch and grow, you will too.
Coming up this week: Vulnerability: Being real in your relationships
This week we will explore the ways being a Raregiver™ renders you vulnerable. Raising a child who has a multitude of physical vulnerabilities points us to the vulnerability of the human condition. Come share your experience with a group of people who are familiar with the path you are walking. Let’s inquire into the strength that comes when you are present yet vulnerable while living with an open heart. Please join us.
Join Us
You may not realize how much you need the ANGEL AID community until you find it.
Zoom Link: Click Here
We look forward to being with you soon.
