

Growing Up With A Special Needs Sibling

I just finished a book called “The Normal One”. This author grew up with a special needs sibling. But the author does not like the term “special needs”. She feels all children have special needs and that it does not makes sense to apply the term only to particular children in a family. Instead of “special needs”, she prefers more direct, less softened terms like these:


She feels that people shouldn’t soften the distinctions between terms like “normal” and “abnormal” and says when there is no allowed differentiation, it’s bad for everyone.

Do you agree? Does the term “special needs” bother you? Do you feel it’s a softening? Do you object to this author’s list of other terms?

When I finally got the book from the library, I noticed the full title:

“The Normal One: Life With A Difficult Or Damaged Sibling”

At first, I kind of balked at the title. It was the word “damaged” that bothered me. Since reading her explanation (which I do understand and can appreciate on some level), I’ve been rethinking my initial reaction. I would like to know your reaction to her unapologetically honest language.


Other thoughts…

1) An interesting running theme in this book is repression (and resulting anger). This author was clearly sick of feeling she was “supposed” to feel a certain way about her “damaged” brother. She never felt allowed to be negative about him for instance. Just compassionate. And patient. And adult-level responsible. But in reality, she was an angry child/adolescent and felt forced to stuff it. (So perhaps that’s where her desire for real honesty comes from.)

2) Anyone who is forced to grow up too fast, too young could suffer from resentment/anger issues. You don’t feel allowed to have a fun youth. You feel you have to second-guess every move you make. You don’t feel allowed to consider your own feelings/impulses first. (Life is always about someone else who “needs” you to be a certain way.)

3) This book really jarred me into realizing the huge impact siblings have on one another.

4) The author writes that siblings who grow up with “damaged/difficult” siblings often have some very common tendencies that they work through at varying levels:

a. moving far away from family at some point.
b. guilt they must intentionally push aside when they have their own legitimate successes.
c. hestitation to freely move on to new stages of their lives like “normal” people do (they feel guilty that their sibling will never “go to college”, “get married”, or “buy a house”. So they hestitate in their own legitimate progress, do things “later” than other people, and sometimes even sacrifice their own milestones – until they realize they don’t have to.)
d. pressure to feel like they have to be the “good”, “easy”, “happy” child because they don’t want to cause any further burden on their parents.
e. tendency to look down on “immature” people.
f. an extra “neediness” to have time with their parents who tend to be very preoccupied/busy/tired from dealing with the other child.
g. higher percentage of people who don’t want to have their own children out of fear that the problem may repeat itself.

(There are other traits/tendencies the author listed, but those really stuck out to me. Obviously, some apply more to adults, and some apply more to kids who are still working things through and maturing. For example, Pt. e is something that supposedly mellows out as a person matures and sorts through their experiences. As a teen, they may be very judgmental towards people who “act like little kids”, but as a mature adult, they can become more gracious and understanding, even if they themselves never really act “silly” or “childish”.)

This past month, I volunteered at my church’s “Special Needs Respite Night” where we offered free childcare to parents. The parents were all really glad to have a night off with their spouse, or get some time to themselves.

Every time I volunteer at this event, I learn something new. I learn more about the specificity of terms that parents use to describe their child’s situation. The resulting behaviors. The kinds of support kids are receiving (medical, academic, etc.) The parents’ own emotional experiences. Etc. It’s a world I’m pretty unfamiliar with, as you can probably tell from my post. But I’m trying to learn. And be aware. And do something to help in my own small way. I’m asking questions and reading books about all this because I don’t know.

Do you have input on anything I’ve asked or relayed from the book?


Christina Hyun