When People Don’t Get it

Misunderstandings happen regularly and oftentimes, they can leave us feeling unseen. As a raregiver, a misunderstanding with a friend or community member could mean that your child ends up in the hospital. Misunderstanding was the topic of our rich discussion this past week in the Rare Family Dynamics support group.

Awareness

Perhaps you have friends or family who are unaware of the importance of letting you know that their child had a cold or a sniffle this week. For your Rare child, a sniffle could mean hospitalization. A sniffle could turn into a life or death situation brought on by a respiratory infection.

Sometimes your friends might dismiss your concerns and perhaps they even judge you as being hypervigilant because they don’t understand what is at risk. They might say “Eh, kids get sick.“ They do not understand what it means to have a Rare child. The gap is wide between you and those raising neurotypical children.

Being an advocate

As a raregiver, you need to advocate for your child. And it’s important to remember that you are not responsible for other people's feelings. Sometimes people will understand your needs and others won’t.

Those who continue to be willfully negligent may need to be cut out of your life. Their unwillingness to understand your situation is not sustainable and may present real danger. You need to choose the people who have the capacity to understand and support you and your Rare family.

Communicate

In order to attend a birthday party for instance, it’s important to get the lay of the land and ask what kind of food is being served, who will be there and if the cake is made with white sugar. It takes a lot of energy to talk to everyone and set them up. Sometimes you may feel like isolating because it’s just too much work to attend a gathering. 

Find your tribe

You may need to let go of what you know about friendships and open up to new connections. As time goes by, you will see who can and cannot show up. People's capacity will reveal itself and remember, friendships have their seasons.

You will find your tribe. These are people who have experienced grief in their lives and who can relate more fully to your experience. It’s as  if people who have not experienced deep grief are seeing in black and white while you are seeing in color.

Here is a powerful piece by Emily Rapp, a woman who is a member of your tribe. Thank you Laura! Read it here

Coming Up This Week: Discovering Your True Friends: Navigating Relationship Changes 

Having a Rare child changes everything including friendships and how it feels to move around in your community and the world. You will very likely encounter awkwardness. Many neurotypical people do not know how to act around a child with special needs which feels uncomfortable. You are now engaging with their discomfort and your own. 

How do you communicate with friends about what you need? You may find that some friends pull away while others open to the changes and support you. You may need to let go of certain relationships while opening to others with Rare mothers and people whose capacity allows them to meet you and your Rare family where you are. Come share your experience and listen to what others have learned along their journey.

You Belong Here

This group is open to all raregivers regardless of gender or relationship status. Join our amazing community of raregivers 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. Your presence is a contribution.

Zoom Link: Click Here

We look forward to being with you soon.

Warmly,

Padma