I recently connected with a group of special Moms. All are Mothers to a child (or children) who have special needs. I've found community with parents of children with Down syndrome, but am also finding a larger network of support through others who don't have the same circumstances but understand the change in expectations just the same. Since the dynamic of Expectations has been on my mind, I've asked a couple of friends with different circumstances to share their experience and how their Expectations have changed. So, I'll be sharing a couple of posts by some new friends in a blog series I'm titling: Expectations. (I know....can you HANDLE the originality of the series name? Genius. :) But, since there is a lot to be said on Expectations, I decided I didn't need to fancy it up at all...)
This is Jill's Story.
My name is Jill, and I have to give a great thanks to Jen for having me guest post on her blog today! I am fairly new to blogging, but am loving it. Among other things, I am finding it as a great way to let out all kinds of feelings about my son Kekito’s Autism and how it affects our lives.
Jen and I decided to broach the subject of “expectations”. We really expect so much, don’t we? I feel like a large majority of our population feel entitled to so many things; we seem to just expect things to “go right” in our lives. “Suburban home, 2.5 beautiful children, a Labrador retriever, etc…” ;)
At some point I think everyone has some sort of wake up call. I think I’ve had a few in life thus far. My first big one was in high school. I won’t get into details, but I learned the value of good friends & loyalty. There have been many more adjustments to my expectations along the way; but the biggest came with my first son, Kekito. When he was around 10-11 months old, I began to notice the first signs of Autism.
When I was younger I never imagined having a child with special needs. It’s the “it wouldn’t happen to me” attitude. Why do we think that? Is it a defense mechanism? Or on a deep level do we think that there must be some greater cosmic reason for it to happen to other people? And I apply that question to all the things we think that way about: getting hit by a bus, a plane crash, the lottery even! …“It won’t happen to me”. Knowing what I know now, I know that can’t be true. It’s just life. Plain and simple, everything has to happen to someone. At first I thought, “Why me?!”, then one day I realized, “Why not me?!”. If 1 in 110 children are going to have Autism these days, seriously, someone has to live with it. So why not me?
I read a beautiful poem once that said that God gave special needs babies to the special mothers who could love them, nurture them, empathize with them, be patient and kind with them. I don’t know if this is true. I often think of it, and wish & hope that it’s true. Because if God thought I was special enough to have Kekito, then I know I can make it through all the rough times. It’s in those rough times I most remember it. It brought tears to my eyes, because I had always expected to be a great mother. Easily. Even though I know that I bend over backwards and turn myself inside out for my son, so many days I don’t feel like the great mother I expected to be. I think the problem is I expected to have infinite patience for my children. Then when I don’t, and I get annoyed to the brink of insanity I feel overwhelmed with guilt. I realize that on many days, it must seem like hell in Kekito’s head. I have ADD and a few sensory issues myself, and it’s a nightmare some days. Seeing how many problems Kekito has and knowing that he doesn’t even have the ability to fully understand what’s going on… it makes my heart break and streams trickle down my face. It aches to know that many days he is so very likely, confused, frightened, or just not feeling well; and there’s nothing I can do to explain that it’s only for a little while.
I expected Autism to be terrible. But I’ve learned that it’s really not so bad. Maybe on some days. Maybe in certain aspects of life. But overall, I actually feel really blessed by Autism. It gave me a stronger bond to Kekito than I think I would have had otherwise. It really made us a team. Everyday we go into battle together. There’s a little friendly fire here and there, but it’s all good at the end of the day. I am so much more patient than I ever was before. I never knew I could hear the same word repeated to me ALL day and still be able to feign excitement for him on the thousandth go-around. “Moon. Yeah, that’s a really fantastic word Kekito…. Yes, moon, unh huh, moon. Good job”… Awesomeness. I just try to remind myself how glad I am that he is talking at all!!! I never expected that it would finally lead to me to what I want to do in my life. I never thought I’d want to work for Early Intervention, but now it’s the only thing I want to do.
Life now is so different than what I thought it would be when I decided to start my own family. There are things I’d change if I could. But I don’t think Autism is one of them. I know that sounds strange. And some days, I’ll want to take that back. I can guarantee it! Overall though, I think it has made me grow immensely as a mother, and a person. It’s taught me not to expect anything, but rather to be grateful for everything little.
If you would like to read more about my family, as well as our Autism experience, please visit me at: http://www.sublimebynature.blogspot.com/