Life with Sarah

No one ever wants to find out that something is "wrong" with their child. For parents, receiving such a diagnosis signals the end of the world, and the beginning of a new one. It is something that you are never fully prepared for, and you feel so many mixed emotions. You feel sad, angry, scared, and alone. You feel like there's no way in hell you can do this, but there's no going back. Life keeps going, and you must soldier on.

Steve Mercer is a proud father, bursting with nothing but love for his two daughters. This is what he wrote about life with his daughter, Sarah:

Let me start by saying I know every household has their issues. I know that families deal/struggle with their own challenges everyday. Some more, some less. This is (part of) our story.

You make the decision to have children, they are the Undiscovered Country (our future). You have hopes and dreams, you have intentions and ideas. But you often say ‘As long as they have 10 fingers, 10 toes and are healthy – that’s all that matters’. Then you discover that there is a lot of truth in that saying, a lot of truth; and that a lot of the hopes and dreams, intentions and ideas will have to be readjusted or re-imagined. Words like Global Developmental Delay, Autism and Special Needs are now introduced to your life. You don’t really know what you are in for, you have no navigation tools to help you. And then, somewhere in the back of your mind you can hear Denis Leary saying “Life sucks, get a helmet”. Bollocks. Bollocks to that.

I would gladly take on her illness for her to have a less complicated, more fulfilling life. Without question. But I can’t.

So you start trying to ‘fix’ her illness. You want to help her in any way that you can. Until one day you realize, you can’t. There is no fixing. There is no taking away. There is no going back.

You learn to support and guide. You do all that you can, you learn all that you can, you fight – and I do mean fight – all that you can so that your child has a chance to learn, develop and grow to their potential.

You redefine and accept your new normal. You lose friends, you make new ones. You adjust your idea of a family holiday, a lay low weekend, and a good nights sleep. You search out ways to bring your stress levels down. And you become hardened by living in a state of chaos.

And just when you think that you are at the end of your rope – she looks at you and says “ice cream” … and it is a wonder. She is in there … she is trying. You just have to change the way you listen, change your expectations. Forget what you know and see her for what she is. A beautiful, wonderful, intelligent, caring, curious, essential part of your life.

*****

Sarah's sister, Grace also wrote about having a little sister with Autism:

  
So, because today is World Autism Awareness Day, I thought I would show you all my wonderful little sister, Sarah. She is the best sister I could have asked for, she is such a unique person. Sarah can go from being serious to laughing until she's weak. She has taught me so much about people and kindness in such a little amount of time. Sarah doesn't have many words and you can't have an actual conversation with her, but she knows how to communicate without them and damn that girl gets what she wants. But, because she's the age kids are typically able to talk, when people see her and try to talk to her and she doesn't respond they call her grumpy or cranky but she's not. She's a happy kid but she just can't really respond to you (this happens a fair amount). So, I don't really know why exactly I'm posting this except to show you that just because you can't see that she isn't the typical 6 year old, she still has struggles and that just because you can't see autism doesn't mean it's not there. So, just don't judge and always celebrate the little things. That's what we do (getting hugs from Sarah is a big accomplishment so if she hugs you, don't take it for granted).

*****

We all deserve to be loved exactly as we are. We all deserve to live without judgement, and to be understood. We deserve to have our story heard and listened to and appreciated, because we are not alone, and when people understand our story, they are often more accepting of their own.

Autism awareness simply means learning to love and accept what is different. What makes Sarah different may not be the same as what makes my son different, or your child different, or even you or I different, but that's just it - it's different. We all are, and that's ok. The more people know, the better life will be for individuals like Sarah and for everyone who is different and struggles to be accepted.

World Autism Awareness Day was Saturday, April 2nd. Parks Canada showed their support for greater autism awareness by lighting Cabot Tower in St. John's blue! Many friends and supporters of the Autism Society of Newfoundland and Labrador joined at Signal Hill for a group photo!

If you love someone with autism, hang in there. It is going to be ok. Every child is different and every family experience is different, but there are so many people who know what you are going through, and understanding is one of the greatest gifts we can share with someone else. So, don't be afraid to reach out, to ask questions, and to share your story.

So much love (and understanding),

-Julie