Saturday, January 05, 2013

The Unusual Ways Disability Affects a Non-Disabled Twin

I'm beginning to wonder at what age JJ will realize that the rest of the world sees his brother as less-than.

And I wonder how he'll feel about that.

I was six years younger than both my brother and sister and continue to carry a rather large chip on my shoulder about it. Even though I am acutely aware of this failing, I can't help but despise when anyone questions my abilities or treats me as less-than. Being underestimated, and resenting it, is deep in my psyche.

So one might think that I would empathize with Malachi, and in many ways, I do. Malachi is functionally "younger" than his twin because of his greatly delayed physical abilities. I can see a dynamic emerging in which Malachi follows along with whatever JJ chooses to do.

But often I think of JJ as the younger one. To the rest of the world, Malachi is deficient, but to JJ he must seem The Chosen One.

Malachi still gets to have bottles, often loaded with fancy sugary stuff like Pediasure, while every day JJ has to cry bitterly into his cup of regular cow milk. Malachi gets to ride in the stroller or get carried around, while JJ is often forced to walk. Malachi gets praised enthusiastically for every 10th bite of food (counting bites has been the only way to keep his interest in eating real food), while JJ eats impressive quantities and varieties of foods, unnoticed, occasionally yelling out his own numbers in an attempt to capture his mother's attention.


JJ (left) pretending to fall asleep in his food, like Malachi did. 


Capturing my attention comes in many unusual forms in this house. Jaden will often lean very far over in his high chair until I ask him to sit up straight, like I do to his brother when his poor balance causes him to topple over. Lately, when upset, JJ will fall on the floor and then watch me from his back with calm eyes. If I don't react, he'll say: "JJ fall down. Pick-er up, please. Mama, pick up."

I do. I don't like that he mimics Malachi's helplessness but I understand that he is trying out ways to get the love and attention he wants. And haven't we all felt like we just wanted someone to pick us up off the floor some days?

But it breaks my heart. So many things about Malachi's cerebral palsy is unfair, but the way it impacts his twin is one of the worst for me. His parents are so exhausted from taking care of Malachi's myriad needs, that they never have enough time or energy for him. In fact, when I was in high school, I remember always trying to say "When I have a kid" instead of "When I have kids" because I felt like it would be impossible to try to accommodate more than one child's emotional and physical needs.

It is impossible. And I know that everybody feels like the grass is always greener, but I becoming convinced that JJ is much more difficult than the average kid — perhaps because he doesn't get enough attention and his brother gets too much, perhaps because he was a preemie and has his own special issues laying in wait for a school-age evaluator to reveal, or perhaps just because he's got a lot of pretty difficult people in his gene pool.

Whatever the reason, it seems to be getting worse. Yesterday, for example, we went to the Children's Museum and had to wait in line with lots of other children and their caregivers. JJ was the only kid running around and around, oblivious and uncaring as to how far away his mother was nor how many times she insisted that he stay close. Other people's kids seem psychologically tethered to them in a way that Jaden never has been. They seem to accept corrections in behavior with relative equanimity while JJ falls to absolute pieces the second he feels like someone is impinging on his God-given freedom to touch anything he pleases and go anywhere his feet take him.

He is fearless and fiercely independent.

A near polar opposite of his twin in that respect.

So I have one 2-year-old who wants to do as much physical activity as possible — without pesky supervision because "I know exactly how pens and electronics and glass containers and cars work, thankyouverymuch" — and the other who would love it if someone would just sit and read him books all day long and hand-feed him bottles and never require him to use any of his hard-fought physical skills.

Why didn't I just have one again?

Oh yeah.

One of the many things I didn't get to choose on this journey of motherhood.

Hopefully JJ won't become as bitter about it as I am.

10 comments:

  1. The sibling thing is so tricky. Ashlea's twin is actually my most easy-going child. Big sister though is a total handful - and I'm sure that it is because of everything our family has been through. I have no words of wisdom for you - but can relate to the sibling guilt thing :(

    ReplyDelete
    Replies
    1. Thanks! It's good to know I'm not alone!

      Delete
  2. That kinda broke my heart... I can totally relate to the sibling guilt - even though I'm the older sibling, for many years I resented my younger brother because he was (and still is) way smarter than me. Like Alison above, I don't really have advice but I'll be thinking about ya'll...

    (PS I've been meaning to tell you how much I loved Dark and Light! My mom is an infant educator and she's been really interested in using it in her classroom as well :-)

    ReplyDelete
    Replies
    1. Thanks so much for letting me know about Dark & Light! And please let me know how the kids like it! I would love to see it in classrooms!

      Delete
  3. My anunt has a son who loves to run around and has an older sibiling who does not have a disability. Maybe its just what JJ wanted to do that day hope it gets better for u guys

    ReplyDelete
    Replies
    1. Yup, like I said, it's probably his difficult genes showing through, but I've heard from enough adult siblings of disabled people that it can be hard for them to deal with the extra attention their sibs always got. There is a great TED talk about these so-called "glass children" if you're interested in Googling it.

      Delete
  4. I found this post off of blogher and I'm really glad I did. I like reading people who have a unique POV, and I definitely think you do.

    The sibling thing is always tricky, isn't it? For ourselves and for our children. My husband and I have three kids (6,4, and 2) and we are amazed at the intricacies in their relationships (some great and some not). My husband has four sisters (three older, and a twin). They are all constantly redefining their relationships. My sisters are 10 and 14 years younger than I am so our relationships are different than most. I watch them make mistakes from my adult perspective and often want to correct them. Mostly I am able to hold myself back.

    As far as the running off while waiting in line thing goes...my middle child does that a fair bit. Usually my oldest chases after him and brings him back. Your son is still so young that I wouldn't sweat it too much. Easier said than done, I know.

    I look forward to reading more of your blog. :)

    ReplyDelete
  5. I completely understand where you are coming from here. I feel like Brady does the same things. In fact, I compare him to having "middle child syndrome" even though he technically is the oldest by a minute. But Parker obviously gets most of our attention and Ryder gets a lot too because he is still a baby (sort of). So, Brady does any and everything to get our attention. I worry constantly about how this will affect him as he gets older.

    I really just pray that he will be a better young man for it, more compassionate, more caring and confident. But how that will happen I am not sure. If it happens, it won't be because of anything I did. I feel like I am failing almost every day in the parenting area...


    ReplyDelete
  6. It isn't just with twins.

    My son, J, is seven with severe spastic cerebral palsy. He is functionally an infant. Non-verbal, non-mobile, unable to eat or dress or do, well, ANYthing on his own, save for making noise. And he is Very Good at making noise.

    His baby sister, C, is almost two. When she was six months old and just starting solid food, she used to demand her own spoon and refused to BE fed. She wanted to do it by herself, no help from anyone else. Now, she refuses to feed herself with a spoon, and I'm sure it's because her big brother doesn't.

    There are many of his behaviors that she mimics, and many things that she often acts as if I'm being unfair because she has to do something but J doesn't. I often worry that there will be many more issues like this until she's old enough to understand that she has to do things because she CAN, and her brother doesn't because he CAN'T.

    ReplyDelete
  7. This comment has been removed by a blog administrator.

    ReplyDelete

LinkWithin

Related Posts Plugin for WordPress, Blogger...