Developmental Disabilities Awareness Month: Parentification of Siblings

As a young child, I took it upon myself to teach my little brother to talk. It’s safe to assume that seven-year-old me had no clue as to what I was doing. Besides being a kid myself, I was also struggling with speech issues. But I tried. I used M&Ms as a bribe, and my very food-oriented brother would attempt to say the words. In addition to trying to be his speech therapist, I took my brother everywhere I went. He was my shadow, whether I wanted him to be or not.

My motivation for being so involved with my brother, past the typical sibling bond, was complicated. First and most importantly, I truly loved my brother. Although my parents never verbalized it, it was apparent my brother’s disabilities were a source of stress. As a natural peacemaker who did anything (and still does) to avoid conflict, I made it my job to help ease my parents’ workload in any way I could. Before you think I was a saintly little child, let me be perfectly honest, it was also self-serving. I desperately craved my parents’ attention and approval, and the clearest cut path to that seemed to be as a caregiver to my brother. I wasn’t mature enough to understand my motives until years later, but it was a path from which I have rarely veered.

My brother and I when we were young

I only recently heard the term parentification but immediately identified with it. The term parentification describes a situation where a child acts as a parent to their parent or to their sibling. There are two types of parentification. The first is Emotional Parentification, where the child becomes a confidante to a parent or mediator between the parents. The other type is Instrumental Parentification, which involves the child taking on physical tasks such as taking care of a family member, paying bills, or providing care for a sibling that would usually be the parents’ responsibility.

There are several family scenarios where parentification is most likely to occur. It often happens when there is only one parent in the home. For example, the eldest son is often called on to be “the man of the family” even though they are still a child, or the oldest daughter has to take on cooking and cleaning chores beyond what an average child would do. It also occurs in families, like mine, where a child has disabilities.

Luisa carried the weight of it all on her shoulders.

I first heard the term parentification in a Facebook group for adult siblings of people with intellectual disabilities. Although everyone has unique family situations, the experience of parentification seems to be shared by many adult siblings. Siblings of people with intellectual disabilities may feel they carried too heavy of a burden for their siblings and, as a result, lost some of their childhood. It’s not mutually exclusive to love your sibling with all your heart but still resent some of the loss their disabilities caused for you. Our siblings are not to blame, but sometimes the expectation of others can be a burden.

The siblings’ group has unofficially adopted the song from Encanto, “Surface Pressure,” as our theme because we can all identify with Luisa and the feelings of self-worth tied to our ability to handle all the family problems successfully. The entire song is excellent, but here are a few of the lyrics that many siblings of people with intellectual disabilities feel they can relate to:

Pressure like a drip, drip, drip that’ll never stop, whoa
Pressure that’ll tip, tip, tip ’til you just go pop, whoa-oh-oh
Give it to your sister, it doesn’t hurt
And see if she can handle every family burden
Watch as she buckles and bends but never breaks
No mistakes just

Pressure like a grip, grip, grip and it won’t let go, whoa
Pressure like a tick, tick, tick ’til it’s ready to blow, whoa
Give it to your sister and never wonder
If the same pressure would’ve pulled you under
Who am I if I don’t have what it takes?
No cracks, no breaks
No mistakes, no pressure

But wait a minute. Isn’t this what families do for one another? We assist and support each other in any way we can, and isn’t it a good thing when siblings help each other? I think there is a fine line between kids helping their siblings with intellectual and developmental disabilities and a neurotypical child feeling burdened and stressed by too much responsibility. Sometimes, as in my case, the pressure is self-imposed, and the parents aren’t even aware there is an issue. There are so many variables. One child may thrive on the responsibility of helping to care for their sibling, whereas another child may feel stressed and overburdened.

If I were to play the devil’s advocate, I would point out some advantages gained from parentification. Siblings of people with intellectual and developmental disabilities may have a keener emotional intelligence, a more developed sense of empathy, and an admirable trait of responsibility. Like most situations, there are positives and negatives. The trick might be in finding a balance between giving the neurotypical child some responsibilities without overwhelming them with responsibilities that should belong to the parents. If you’re the parent of children with ID/DD and also neurotypical children, consider these suggestions, not from an expert, but from me, a sibling.

1. Communicate

Talk with the other siblings about the child who has intellectual disabilities. Discuss the limitations, the diagnosis, and what it means for the family. Keep lines of communication open and make sure they know they can always talk to you about their feelings regarding their sibling. Talk about the future and expectations.

I urge you to watch the TED talk, “Glass Children,” with your adolescent or adult children. Parents, I warn you, you will probably not like hearing what she has to say, but grab your box of Kleenex and watch it! It might be precisely what you need to gain some insight into your children’s world. It may also open the door to difficult conversations.

2. Check-ins

Occasionally, have emotional well-being check-ins with the neurotypical siblings. Don’t accept the response of “I’m fine” at face value. Even if it’s painful for you to hear as a parent, try to allow the “healthy” child the freedom to express any feelings they may have regarding being a sibling to someone with intellectual disabilities. As a child, I felt an enormous pressure to create as little trouble as possible, to always present myself as “doing just fine” to the world even when my emotions were in turmoil.

3. Realistic Expectations

Are you expecting too much from your “other” children? Don’t pass off too many caregiving obligations to them. As part of the family, they can occasionally be expected to help with the sibling with special needs, just as they would with any sibling, but don’t make them a mini parent. There is often pressure to be the perfect child, so the parents don’t have any additional worries. No one is perfect, and the drive to become perfect may eventually manifest in unhealthy ways.

4. Counseling

Some issues may be too sensitive and painful for a child to discuss with family. If at all possible, offer access to professional counseling. A safe place for a child to talk about their emotions is beneficial.

5. Time

This is the resource most often in short supply in families with children with disabilities. It’s tough to find a few extra hours to spend one-on-one time with a child, but the investment will pay dividends for years. It doesn’t have to be much; go out for ice cream or take a walk. The purpose is to allow the “well” child to have undivided time and attention, to feel they are being truly seen by their parent. I can’t stress enough the value of listening to your child without any outside distractions at least once a week.

6. Plan for the future

I am so thankful my parents did the hard work it took to find a home for my brother before they died. Maybe your other children will take care of your child with disabilities, but don’t assume they will. Your neurotypical children deserve to have all the options and live their life as fully as possible. My parents knew my brother’s care was way beyond the scope I could take on full time while also working and raising children. As much as we’d like to believe parents will live forever, living in that land of denial will only make the transition after your death a nightmare for your child with special needs and your other children.

Siblings may be strong, but as Luisa sings about, that pressure can sometimes be too much. Asking for help is a sign of wisdom and strength. A valuable resource for helping with many of the issues families who have intellectually or developmentally disabled members must deal with is The Arc of Oklahoma. They can point you towards other resources if they don’t provide the service directly. To contact The Arc of Oklahoma, call 918-582-8272 or go to their website, thearc.org.

My brother and I at Night to Shine.