Lovely (or Lonely) At the Top: Being an Oldest Child With a Disability

Hello, readers, and welcome to the installment of the birth order series dedicated to oldest children. This post is somewhat personal to me since I am an oldest child.

Being an oldest child obviously has its perks. You usually get to do everything first. Adults tend to rely on you more and give you more responsibilities, though that can have its downside. You’re the first child who gets to carve a niche in the outside world and excel in your chosen field. Oldest children are often described as organized, leaders, and possibly bossy; while these are sometimes stereotypes, they can be traits used to your advantage. Dr. Kevin Leman knows this; two of his books carry the titles First Born Advantage and Born to Win. (That’s not to say younger and middle kids can’t be winners; it just means a firstborn is likely to be more competitive).

But what if you’re an oldest child who also has a disability? Ah, now we’re getting complicated. In my experience, a disability can take an oldest child any number of directions and have a mixed impact on him or her. For example, Dr. Leman and other psychologists talk about how, if an oldest child has a disability, he or she may be “passed” by a younger sibling. This means although the sibling, or siblings, are younger chronologically, they will become more adept physically or mentally, and thus take on the roles and responsibilities that would have been occupied by the oldest child. The oldest child is in particular danger of this if the disability is severely physical (i.e. quadriplegia) or moderately to severely cognitive (Down’s, Fragile X, brain injuries influencing cognitive capacity, physical disabilities like CP with a cognitive component).

However, even those of us with mild disabilities have to worry about being “passed” if we’re the oldest, on some level. I am four years older than my brother and cognitively above his level. But he is much more physically adept than I am. He can drive, I cannot. He plays sports and I have poor hand-eye coordination, as well as visual issues that make it difficult and unpleasant to participate in athletics. He could tie his shoes and button buttons way before I could. And yes, in our lives that did cause some rivalry. He complained because he felt that our parents gave me more than my share of attention. I fired right back at him that I didn’t want all that attention, and he was ungrateful for the skills he had. You know, that kind of thing.

So, in answer to this first issue oldest children face, I’ll say this: Parents, be careful when you see it happening. It’s not something you can prevent entirely. For example, if oldest child Matt has a cognitive disability and younger brother John is cognitively fine, there is going to be some discrepancy there. However, you can set certain parameters that help Matt feel like the older brother he is. Let him do safe things that John doesn’t get to do; if Matt reaches bike-riding age first, he should get to do that, with guidance and modification when necessary. If the oldest always gets the front seat in the car or to choose the DVD on movie night, Matt should have those privileges.

You can also help by encouraging your oldest child to help younger siblings in areas where the younger ones need it. For example, an athlete I am not, but I excelled at school. My brother struggled, especially with humanities subjects, so guess who helped him pass ninth grade English and quizzed him in Spanish and science? Right, me. In addition, don’t let the older sibling’s insecurities get in the way. For example, if Monica truly doesn’t want to play sports because she has leg braces, don’t force little sister Shannon to teach her to cheerlead. And don’t make Shannon help Monica with dressing and grooming, unless she asks for it; that’s humiliating. But, do encourage Monica to ask Shannon for help if the parents aren’t around, and do tell her that she doesn’t have to be perfect at an activity to enjoy it.

Now we come to the second issue oldest kids with disabilities may face: perfectionism. It kind of comes with the territory of being an oldest kid whether or not you have a disability. You have to understand, we oldest kids had Mom and Dad to ourselves for awhile–at least a year and often more. We grew up around adults, so we learned to behave somewhat like adults even if we played with other kids. We’re generally responsible and organized people and we want to win, so we try to be perfect. If you have a disability, the pressure to be perfect increases tenfold. You may, like me, feel you have to excel in everything else so that your disability will be “forgiven,” or that you have no excuse to “act disabled” (i.e., request help). Learn a lesson I’m still learning: you do not have to be perfect. If your parents are pressuring you to do so–if, heaven forbid, they are actually presenting an attitude of, “Don’t be more messed up than you already are”–you will have to seek outside help from siblings, friends, clergy, etc., to help resolve this issue.

Sometimes though, an oldest child will feel like he or she is already perfect. Dr. Leman calls this being a “prince or princess in waiting.” It’s kind of the reverse version of the entitlement youngest kids feel. That is, because they were first, and because they had Mom and Dad to themselves for awhile, oldest kids might be a little, or a lot, spoiled. In the case of disabilities, this may have been coupled with treating them like a fragile hothouse flower. Some kids are comfortable with this, and they learn to manipulate others just like they do their parents. Others rebel against this, seeking independence, which can cause clashes with parents and family members, and might be unsafe. If this describes you at all, keep these things in mind:

  • You are no more entitled than anyone else. Do not manipulate situations just because of your disability. It may work for awhile, but if you’re anything like me you’ll soon tire of people coddling you.
  • You really can catch more flies with honey. In my own struggle for independence, I have sometimes been a Dragon Lady, and have gotten into some unsafe situations (emotionally if not physically). You’ll need to learn the art of expressing your feelings, needs, and wants well, but calmly. Enlist siblings, friends, teachers, etc. to help with that. As I’ve said in other posts: enjoy being a kid. Just because you can’t do something now doesn’t mean you never will. However, if you are an adult and still being held back, it’s time to get blunt. Remind those around you that you are capable, citing examples of areas where you do excel. Remember that life is not a waiting game. “Ready” is something you determine, not something a therapist or doctor determines for you.

    Finally, oldest kids are often seen as the responsible ones, or as junior adults. This can come in handy; it allows you to build trust with adults early, and to become a more independent person. However, as you might guess, some families go to extremes with this when their oldest child has a disability. They either refuse to give the child age- and cognitively-appropriate responsibilities, or they say, “Having a disability is no excuse” and overload them. Both these scenarios are harmful. In the former, the parents deny their child a chance at independence and a real life. If they can’t do household chores at age 8, why should they clean up after themselves at 18? If they don’t receive an allowance at 10, can you really expect them to be good money managers at 21? (And yes, I know, some disabilities make it harder for adults to manage money, keep things tidy, and so on. But in my mind, that just means they should be taught sooner and better).

    In the latter scenario, the child will grow up believing disability is inherently bad, and perhaps that people with disabilities are lazy and want to make excuses. Parents, don’t consciously perpetuate this. This is what the world already thinks, and has proven it thinks for centuries. Your child will hear enough of this in school and at work; they may be accused of using modifications to manipulate or cheat, or of being lazy when something really is too hard for them. Instead of feeding this sickening myth, give your child realistic responsibilities and incentive for carrying them out (i.e. allowance). Emphasize too, that responsibility does not preclude disability, or vice versa. They are still entitled to come to you or other adults with problems, even as they complete responsibilities to the best of their ability.

    The top of the family pecking order can be a tough place to grow up. On the one hand, you’re on top of the food chain, but on the other, you have all these other little family cubs clawing at you, and Mama and Papa Bear expecting you to act bigger than you are. If you have a disability, you may have to wrestle with a whole new “bear” of a problem. But hopefully, once you and your family knows what it’s dealing with, you too can begin enjoying your position more.


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