I did start to talk about this topic in the post Expanding the ACE Studies. I am very thankful for Sibnet on Facebook and the online community they have grown. If you have a brother or sister with a disability, you have found your tribe.
There are a few themes I am noticing when reading posts from other siblings regardless of the nature of the siblings disability.
- Siblings are essentially neglected- This is by no means blaming parents. The child with the disability requires more attention, therapies, assistance with basic skills, etc. We grow up faster and often before developmentally ready.
- The vast majority of us are in counseling- no shame in therapy. There really sure be yearly check ups like in physical medicine for everyone. It tends to cause the physical aliments.
- Anxiety- I have a few theories on this. Starts with learned behavior and our parents being worried about the sib. Then we worry about if something happens to our parents, now what? If the sib has any kind of behaviors, you are constantly on eggshells. There is sometimes is guilt or shame around the sibling depending on cultural norms.
- We very much dislike ablism or toxic positivity. The memes that go around that say things like “people with disabilities are angels in disguise here to teach us to be better people”. There is nothing angel like about fecal smearing at 3 am. My brother may have had a hand in my career. I will give you that. Watch the video regarding working with limited language
- Empathy- we either go into helping professions or run in the other direction. Most posts I read are direct care, therapists, social workers, nurses, etc. We have empathy for the families we work with that no one understands until you live with it.
Some therapists will say that this would be categorized in “little t” traumas or small traumas that accumulate over time versus a one time catastrophic event. Regardless, it causes us to be in fight/flight/freeze at any given point. I also believe that we go through stages of grief at any given point. Some sibs report guilt when leaving for college or getting married. (I personally ran away for both).
Back to number 3, what does happen when you take over caregiving roles? What if they are all at the same time? The Club Sandwich is real and overwhelming. I more than understand mindfulness and staying in the present moment. I will tell you the present moment can be just as overwhelming as the what ifs.
I think this topic is not explored and we are like onions. There are so many layers. Some research is starting to come out. Mainly because Sibs are doing it and the formation of The Sibling Leadership Network. Did I miss something? I would love to know what other sibs have to say.