April 27, 2008...is it hard

The other day, I did a tv interview about Jakob, Autism and our Autism Speaks Walk. I loved it for obvious reasons...publicizing the walk, bragging on my kid and raising awareness about Autism. The anchor asked me one simple question about raising a child with Autism....she asked, "Is it hard?".

Simple question...complicated answer. And I've been thinking about it for the past few days. I don't even remember how I answered it (haven't watched the tape yet), but I do remember thinking fast on my feet and trying to come up with a short, comprehensive answer (since I know how the darn media is, short answers are what they're looking for). No matter what I said, it wasn't enough so I really want to write about how "hard" it is...

Is it hard?

Yup...hardest thing I've ever done. Changing the way I think and changing beliefs I held and changing the way I see the world...hard...took (and continues to take) work.

Most challenging thing I've ever done. Going after what I wanted was never tough for me. Usually after figuring out what I wanted, I could figure out pretty easily how to get it. And usually it didn't take me very long so it never required a whole lot of patience. I knew what I wanted here...for Jakob to be happy. But I had no idea how to make it happen and it seemed nothing I tried worked. It took everything I had to keep trying...and keep trying. This challenge wasn't easy...it was hard.

Most exhausting thing I've ever done. Never a peaceful moment. Constant movement, constant thinking, constant worrying, constant running. Constant, constant, constant. Never time to kick back and relax. Never any sleep...(and the sleep I did get wasn't good sleep...tossing, turning). Tired and cranky all the time...both me and Jakob. Yup...that was hard.

Scariest thing I've ever done. Not having any clue what to do next or what therapy to try was scary. Not knowing what was going to happen to us in the future...institution??? Scary. Yup...fear is hard.

Most frustrating thing I've ever done. Ya know, all of us learn how to parent from our parents and how they raised us. Some of us had rough childhoods and make a conscious decision not to parent like our parents did but most of us eventually turn into good-old mom and dad. Well, my parents didn't parent a child with Autism...ain't no book for that. Every trick that I could've tried didn't apply to Jakob. I had to learn a whole new set of rules. Not knowing how to do it was frustrating...so yup, that was hard.

Overwhelming, maddening, depressing...have I mentioned exhausting? I could go on...

Yeah, it used to be hard...very, very, very hard. Then the day came when I decided enough was enough, life ain't supposed to be this way and I no longer wanted to live like that. That's when I started to breathe and trust my gut. I knew that there were answers out there for Jakob and me and I knew I could find them. And I also knew that this whole life experience would be as much fun as I was going to make it and that it all was happening for a reason. I knew there were lessons in this that I needed to learn and I was determined (and still am) to figure out every one of those lessons. Life's not about the destination, it's about the journey, right? I made up my mind that I was on one heckuva journey and I was going to enjoy it and do everything in my power to make sure Jakob enjoyed it too.

So the journey truly began for me a little over a year ago and I gotta tell ya, I'm digging it. I still face challenges and I still stuggle sometimes but I don't get so wrapped up in it that I get lost in it. It's liberating.

Simply put, "hard" is really no more than the opposite of easy. And I'd always been told that nothing worth having comes easily. So thru all the struggles, the pain, the anxiety and all the other negative emotions came something worth having. I have an amazing child whom I would never change or trade for anything. He is the light of my life and my greatest teacher. I was born to be his mother and he chose me to be the one to take care of him and to help him.

Another thing to remember is...it ain't about me. None of this is. It's about him. I can guarantee that no matter how "hard" any of it was for me, it's been at least twice as hard for him. He's the one living in a world that he doesn't understand. He's the one with gut issues and doesn't feel well. He's the one who couldn't communicate. He's the one who no one understood. My little "hard" issues were nothing compared to that.

I have a job to do. A job that I take on with great passion, love and understanding. It's my job to help him make sense of this world he's living in. It's my job to make this world seem like so much fun that he'll want to join me and everyone else in it. It's my job to help heal his gut and rid his body of toxins so he feels better. It's my job to give him a bath, brush his teeth and put him to bed at night. It's my job to get into his head and his world so I can help him make sense of everything he's experiencing. It's my job to love every little thing about him. It's my job and I love it.

So when she asked me if it was hard, my first thought was "it's as hard as we make it" but I knew I couldn't say that without a lengthy explanation....so above is a short-in-length explanation. The long explanation will come someday in book form...all the details of the journey will be shared...there are lots of details.

In the meantime, wanna know what he did last night? He was in the tub, happy as could be with the warm water all the way to the top. He was sitting there, looking at me, smiling and I was talking to him about how he can be, do and have anything he wants in life. And as he was grinning at me, he cupped his hands and splashed me right in the face. I was soaked. And I didn't want to react but it was so hard not to laugh so I just sat there with my eyes shut for a few seconds. When I opened my eyes, he had this huge smile on his face and he leaned over and pulled the plug in the tub. I guess what he wanted to do more than anything in his life right then was get Mom good...and he did. Once again, he proved me right. Little turkey.