April 2, 2014

Please Don’t Forget Us: The Stories You Don’t Hear About Autism

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What is the issue?
Today is Autism Awareness day. Your newsfeeds will most likely be filled with stories and statistics and graphics, but it won’t become real to you, because you can’t see into our lives and feel what it’s really like to live with an autistic child. This is our story, for you to read and imagine living this way and for a few minutes, put everything else aside and think about every person affected by autism and what you can do to help. Because you can, even if it’s something as small as a smile in the grocery store when our child is having a meltdown and we are on the verge of one ourselves. That smile makes a difference, it takes away the power of all the judgment we receive every time we are in public, and it means something. Everyone can do something. I’m starting by sharing our story.

My husband and I have two daughters. A five-month-old and a three-year-old; the older having severe autism with cognitive skills at the level of her sister’s. She was only diagnosed a few months ago, but looking back, there were signs as early as at five to six months of age.

It’s the “feel good” stories about autism that are popular. They are the stories that go viral and garner all kinds of attention. They’re lovely indeed, but the lack of stories like my own worries me. I feel that we are sometimes forgetting the kids who are low functioning and can’t speak. Kids who can’t, and maybe won’t, accomplish something extraordinary and notable in spite of their disability. We are forgetting kids like my daughter Aubrey.

I believe this is a dangerous course of action because it doesn’t promote awareness to the reality of severe autism. People hear these wonderful stories all the time and they assume that autism is “no biggie,” and that it just makes kids a little quirky and antisocial. But there is so much more to it than that. And if we don’t share our reality with the public, how can we expect to ever get politicians or insurance companies to hear our cries for help? How can we expect that snotty woman behind us in line at the grocery store to know that our daughter is not just an out of control three year old, and its also not us just being ineffective parents? The truth is, we can’t expect people to take autism seriously unless they know what it’s like to love someone with severe autism or be someone with severe autism.

Our story isn’t much different than others who are affected with severe autism. But it is real, and it is a struggle each and every day. My husband and I were nineteen when we found out we were pregnant with Aubrey. We were in college and living the college life, completely unaware of how much would soon change. But we fell in love with her from the time the test said “pregnant.” We moved from our university and he got a job and we did our best to prepare for our baby. We took the classes, we read the books, we prayed, and then finally she arrived. Neither of us had ever felt that kind of love before and we were amazed at how much that love grew and continued to grow, and how it matured us from young selfish kids to selfless adults. We talked about the days and things we looked forward to, her first steps, the first time she would say our name, putting her in ballet class, her first date, her prom, her wedding day… and we soaked up every smile and hug and dove into being the kind of parents we wanted to be.

Then we started noticing some delays. They started out small. She wasn’t waving or saying our names, she didn’t start to walk until later and of course everyone would tell us “all kids develop at different times and in different ways” and we clung to those words… but then the delays multiplied. The time came when she was two and a half and still not talking, still not using a fork or spoon, or playing with toys the appropriate way, and I started to realize she couldn’t understand our requests or instructions. She was diagnosed in September 2013 and as hard as it was to hear it, I was also relieved to know I wasn’t crazy for thinking something was off. She has started becoming more aggressive and less social but has made some progress. Little things, but huge things to us. Like taking our hand and leading us to the kitchen for a snack. We celebrate every bit of progress, no matter how small. Things seem to change every day, and just when we think we have solved one challenge or difficult behavior…a new one comes along. But a few things remain constant: stress, fear, and love.

I can’t even begin to explain how much I would give to have a conversation with my daughter. To hear her say “I love you mommy” or to know that the hundred times I tell her everyday, she’d understand. I know that she knows I love her by my actions and our bond but it just isn’t the same. I would love to go out with my family without it overwhelming her, I would love to put her in ballet class and dress her up and let her play with my make-up. Maybe all that will happen one day, I can’t and won’t give up hope for that. Because the day I do, is the day I wouldn’t be able to carry on.

I desperately long for people to understand what it is like to live this life, because until they do things will never change. I want people to understand what it is like to watch your child struggle to do the most basic things, I want them to understand the pain we feel when we have to pin our daughter down every night to brush her teeth, when we try to comfort her but she is so stressed the only thing she can think to do is bite, kick, or hit us. I want them to understand the pain that it is to watch your daughter bite herself and see the marks she leaves on her own body. I want them to understand the loneliness that we feel when no one understands what it is really like because they only see tiny parts here and there and don’t actually live it day after day.  I want people to understand the worry we have every day for our daughter’s future and her well being. I want people to know the pain I feel when they stare at us in public. I want them to understand her, and all the struggles she faces. And how brave and strong she is with all of this. I want people to understand that when I share the reality of our every day life, its not to complain about our situation, it’s to inform. It’s to make people aware. It’s to help them remember my daughter.

So next time you hear or read about that autistic kid who has some amazing talent and is now famous take joy in that and share the story, but please don’t forget the rest of us who might not be so fortunate and are lucky to make it through the day with no battle scars. TC Mark

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