Boundaries & Self-Care
Photo by Pew Nguyen courtesy of Pexels
We recently had an amazing Women's Empowerment Circle. I was reminded of how incredibly supportive it is for raregivers to gather together, especially when some have children entering kindergarten while others have children who have already graduated high school. When we come together, we share our hearts and the wisdom gained from our life experience. You can trust that you have wisdom to share. Here are some nuggets from our circle.
Setting Boundaries
We spoke about setting boundaries, which means boundaries with others, as well as with yourself. If you find yourself spinning out in fear about a medical procedure that your Rare child needs, this is a good time to set a boundary with yourself. Close your eyes and interrupt the cycle of anxious thoughts and with a pause. When you take time to pause and be present, you can discern what is true. You can also tap into a source of inner wisdom and trust, which is very useful for navigating life's tests and challenges.
Trusting the System?
When you are about to enroll your Rare child in kindergarten, you may wonder whether the school has a robust enough program and if the staff will take care of them properly. Raregivers often talk about the dilemma of whether to keep their Rare child in the local elementary school with predominantly neurotypical children. If you do, your Rare child will be known and more integrated into the community, but can you trust that they will be safe. The school may have a great system, and if there is an emergency and the nurse is busy what will happen to your Rare child if they have thrown up all over themselves? Will they be tended to soon enough? In cases like these, it's important to trust your gut feeling. Slow down and pay attention to what your intuition is telling you. Set a boundary with overthinking. And, even if the school assures you that they will take good care of your Rare child and that they have the resources to do this, it’s still your call. Do your due diligence and trust yourself to make the right decision.
Advocates
Hiring an advocate can be a great thing or you can hire one who shows up at your IEP meeting, does next to nothing and charges you a fortune. Whether you are able to hire an advocate or not, you will still need to be the primary advocate. One of our participants yesterday who has an older child said, “Regarding the school system, the reality is that sometimes your Rare child will be well held, and other years not so much. As disconcerting as that is, it is the truth.” Be kind to yourself along the journey. Pick the battles that are aligned for you and let the rest go. Most importantly, take care of yourself first or you'll get burnt out and crispy around the edges.
Taking care of yourself
Self-care is one of the primary things we focus on in our support groups because it is foundational. Take things like sleep for instance, when you go to bed, see if you can leave your phone alone and not get lost in scrolling on Instagram or the platform of your choice. Go to sleep. Getting enough sleep makes everything better and as a raregiver, you may be waking up multiple times each night; going to bed early is an excellent idea.
Mindfulness is another great practice. Taking time to be quiet and turn toward yourself even if it's just five minutes per day. A little bit at a time adds up to a lot. And as you are sitting quietly, you may realize that you are exhausted or hungry or thirsty. Tend to yourself.
Embrace your own vulnerability because you are human. Many raregivers think they are superhuman. You are a super incredible human, you just have limits. You need to ask for help. Ask your neighbor for help or family members so you can take a break. Ask for help even when it's uncomfortable. It's true, there are pluses and minuses to having your in-laws in your space and you need help. Do it anyway. You'll be glad you did.
Join Us
Coming Up Next Week: Theme: Team Play: A Communication Toolkit
Description: Your Rare family works as a team. You are in it together, share a common vision, and goals. This includes relationships with your partner, children, healthcare professionals, friends, co-workers, etc. We will explore some key elements of a great team including collaboration, listening and validation. You will learn how to be a better team player by practicing these skills. In order to support your Rare family, you need to have a healthy team. Let’s cheer each other on!
Please Join Us for the Women's Empowerment Circle every Tuesday at 10am PST
You may not realize how much you need the Raregivers community until you find it.
Zoom Link: https://us02web.zoom.us/j/88974713173
We look forward to being with you soon.
𓆩♡𓆪 𓆩♡𓆪 𓆩♡𓆪
