Walking this road of special needs and adjusting to this “New Normal” world is difficult no matter the diagnosis, simply because even though you are living in this New Normal world everyone else (so it seems) is living in “the regular normal world.”
Besides keeping your special needs child alive, going to doctor appointments, therapies, and trying to make sure that they have a childhood full of childhood things that don’t include anything medical, one of the biggest issues of this New Normal is explaining to your child why they are different. And yes, even though you want to tell the world when they make faces at your child to “Mind your own business and learn some manners!” you will at some juncture have to explain to the world why your child is different.
I have always been honest with Mighty Z and her sister Lala (without going into the scary details) of why Mighty Z was born with special needs. It seems that not just have both my girls accepted my reasoning's, the world also has accepted my explanations of why Mighty Z has special needs.
Honestly the explanations started with Lala. She is 29 months older then Mighty Z. I had to explain to a 3 year old why her sister was coming home at 6 months old on a ton of machines.
I started with “Everyone has issues. Some people can’t see very well and need glasses, some people can’t hear and need hearing aids so they can hear, some people can’t eat so they have a tube that feeds them, some people are sad inside and need help to feel happy, some people have a hard time reading , doing math, etc.. Everyone has issues. Some issues you can see and some issues you can’t, but the fact remains that everyone has issues. Mighty Z’s issue is that she doesn’t breathe on her own all the time. So just like a person who wears glasses, Z’s life support machines help her when she needs the help, and the monitors help mommy know when Mighty Z needs a little more help. Let’s think about what is hard for you that you need help with some times.”
It is interesting that this simple explanation was all that Lala needed to understand her sister’s needs. As Mighty Z has grown I have told her the exact same thing, and Mighty Z accepts that she, like everyone in this world, has some issues.
I have been asked by several teachers and parents throughout the years to help them to understand Mighty Z’s special needs, and yes, whether the asker is young or old, I always start with everyone has issues. And you know what? 99.9% of the time that is all people need to understand why Z needs what she needs.
Yes, some issues are bigger issues than others but in the end that’s all they are, just issues. It’s important to remember, though, that your issues doesn't define you and Mighty Z’s issues definitely don’t define her.
So if you ever see Mighty Z out and about and ask her what is different about her, she will just tell you that she’s got some issues.
edited by Emily Minich01 02 12