The Pain Of Misunderstanding

Our Rare Family Dynamics group continues to go deeper. This week we looked at how to navigate misunderstanding, denial and comparison. We shared our wisdom along with what we have found to be supportive and challenging. If you are a member of a Rare family, you belong here.

Comparison

As a member of a Rare family, it’s likely you’ll encounter comparison. Maybe you compare your Rare child to a niece who is their age and ask yourself, “Why isn’t my daughter climbing trees like she is?” This can be really hard especially if you hear another child say, “I love you, Mom.” Maybe you wonder why your child is unable to speak these words to you.

Comparison is painful

A relative may casually talk about seeing their daughter in a play and how amazing she was spinning around on the stage in her flower costume. As her aunt, you want to be proud of your niece and at the same time, it’s painful. The line between being proud versus bragging about your child’s greatness can create tension.

Navigating family text chains

Maybe your family has a text chain where everyone shares pictures of their children and all the wonderful things they are doing. In moments, you may be able to see these pictures and smile. At other times you may need to set a clear boundary and ask your family not to share pictures on the group text. Asking them to post their photos on social media instead of on your family text chain may create distance. 

In these moments, it’s important to notice your own capacity and be truthful. This means you speak up and set boundaries appropriately. The reality is that as a Rare parent, you have a very different set of expectations for your Rare child than a parent of a neurotypical child might have. 

Feel you feelings

Allow your feelings to arise. Let yourself feel any feelings of anger and unfairness. Tell yourself, “my feelings make sense.” See if you can accept them and eventually let go.

Misunderstanding and criticism

One Rare mother shared about the challenge of not having a diagnosis yet and how hard it is to deal with other people’s comparisons and criticism. The reality is that sometimes you just do not have answers to other people’s questions.

For example, maybe your Rare child is not sleeping on a normal schedule and so your sleep schedule is off. People may judge that you are lazy and just want to sleep late. This hurts. They are not seeing you for who you are and have no clue about the reality of your situation.

Helpful suggestions

People in your family or community want to be helpful. They may make suggestions that would work for a healthy child, yet they do not apply to your Rare child. It is even more complicated when your child doesn’t look sick and she appears to be completely fine.

If you tell them that your child is not sleeping well, they might suggest that you take her to the playground and run her around because if she plays a lot she’ll be tired and sleep well at night. This makes perfect sense except when it doesn’t. Your situation is unique and you know what you know. Trust yourself.

Judgment

People in your community may even say that your child is not sick, that it’s all in your head and that you need to go and see a therapist. One Rare mother from South America said that people suggested she take her child to see a shaman or have an exorcism. They did not respect her choice to take her child to the US for traditional allopathic care.

Oftentimes, people are afraid and so they offer suggestions to help you “fix” your situation. They might even say “just treat him like he’s normal.“ These kinds of comments may stir up feelings of loneliness. We are here for you.

Acceptance & Curiosity

Ultimately, it is useful to come to a place of acceptance and recognize that one person‘s path is not necessarily the same as another’s. Perhaps you can have compassion for other people's limitations and practice curiosity. When you lead with curiosity, the space softens. Curiosity opens doorways. 

Coming Up This Week:  Discovering Your True Friends (Awkwardness, Communication, Letting Go, Making new friends)

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

How do you communicate your needs to friends? Some friends will pull away while others adapt and find ways to support you. You may need to let go of certain relationships while opening to others with Rare mothers and those whose capacity allows them to meet your Rare family where you are. Come share your experience and listen to what others have learned along the way.

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. You belong here. 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 our style). 

Your presence is a contribution.

Zoom Link: CLICK HERE

We look forward to being with you soon.

Warmly,

Padma

Meeting Quote: Julie Southard (Rare Mother - Cri Du Chat Syndrome)

“This group gets me connected with people who really understand with no judgement. SOmetimes I just need to hear people that are real and I know I need to get real too”