As you know, I do not edit guest posts for content. This is so the voice of the author comes across, and the piece remains their own. I am so flattered, and honored that Tracy asked me to help her out by posting this. I know you'll love her as much as I do. And, if this piece really speaks to you, and you'd like to connect with Tracy on twitter, follow the link in her bio at the end of her post.
Recently I read a post that I have not been able to stop thinking about since. It was written by Jill over at Yeah. Good Times, and you can read it here. I read it once and was really moved. I felt her pain. A little later I read it again, this time out loud and to my husband. When I said the words out loud, they resonated a little deeper and I started to choke up as I read them. After I finished I looked at him, and we both had tears in our eyes. It was a brilliant analogy to how Autism can make you feel as a parent. As with other moms who have children with Autism, I worry. A lot. My son is only 4 and I worry about him getting bullied in high school. Right now I can protect him, but that won’t last forever. Jill’s words made me feel sad, and made me think a lot about what my responsibility is as an Autism parent.
I read a lot of negative stuff on Twitter and in different blogs that talk about how much they hate Autism and even how resentful they are at their children sometimes for how they affect their life. I have read a couple of rants where parents are basically telling all their friends and family off because they couldn’t possibly understand how hard their life is. I can’t comprehend that. When Autism is kicking my butt, I go to my online friends. The moms and dad there are the ones who know exactly what I’m saying. They live it too. They know what to say and what not to say, and it provides comfort knowing they truly know what I’m going through. However, I would never demoralize my family and friends by telling them they just don’t get it. The truth is, they probably don’t get it. They don’t understand all the nuances of Autism, but they are there if I need something and more importantly, they love and support my son. I also refuse to endlessly talk about how much Autism sucks. Don’t get me wrong, I’m not saying I’m happy that my son has Autism. It has been a challenging road and it will always be difficult. However, I also don’t spend time wondering how he would be if he didn’t have Autism. Where is that going to get me? That is a question that can never be answered, so why waste a single moment thinking about it? I prefer to spend my energy trying to do all I can to help my son. So I read, I make phone calls, I research, I ask questions, I ask more questions, and I get stuff done. As my son was getting prepared to start ABA therapy a couple of weeks ago (after months of classes, phone calls and red tape), my husband commented to me that he had no doubt that our son’s life would be so much better, simply because I was his mom. It was his way of thanking me for all the effort I put forth, and it meant the world to me.
There are definitely days that I get sad thinking about the things my son won’t experience. Sometimes we have to say ‘thanks, but no thanks’ in response to party invitations. The stress of an unknown environment is sometimes too much for children with Autism. The stress can lead to a meltdown which most people see as a tantrum. They don’t understand the difference, and all they do is judge. Last year for Halloween we waited in line at the pumpkin patch to go on the train. He loves trains. Once he was on the train, I knew he would smile and laugh and say ‘wheeeeeee!’ But that didn’t happen. We couldn’t get on the train. Waiting in line on this particular day was over stimulating. So, I carried him out of line crying, kicking and screaming. My mom went and asked for a refund. Everyone stared at us all the way to the car. I know what they were thinking. Once he was safely in his car seat, I started to cry. I wanted to go back and explain to all of them that it’s not what they’re thinking, he’s not a spoiled brat, and as parents they should not be so judgmental. But if they’re going to judge us in the first place, they’re certainly not going to be open to hearing me out. Instead, we left with our tails between our legs. It’s so frustrating to know that he would have loved the train ride once we got on, but for whatever reason the line was too much that day. However, I can’t ask him why he’s upset because he doesn’t understand how to answer. I can’t explain to him that once we wait in line and sit on the train he would love it, because that doesn’t mean anything to him.
This past week I have been struggling with finding out the sad truth about an organization that I formally supported. When my son was first diagnosed, it was the first place I turned. I wanted help and I wanted answers. An Autism diagnosis changes your life in a second. Getting support and knowledge about the journey is a necessity. However, I can’t worry now about what caused his Autism, and I don’t want him ‘cured.’ I want him to receive the help, therapy and guidance he needs to be the best person he can be. I want him to grow up proud of who he is. I want him to be one of those teenagers/adults with Autism that people know because they make a difference to this community. I want him to learn how to process and express his feelings. These are my new dreams for him. I want to support organizations that want to see my son achieve these dreams as well.
There are times when my heart aches because my son doesn’t want a hug, can’t tell me about his day, won’t want to play with me, can’t tell me what he wants to do, where he wants to go or when he is hungry. Some days he is perfectly happy and then will cry and struggle for no apparent reason and he can’t tell me why. There are days I want to take him to an amusement park or the zoo and want him to enjoy it, knowing that he can’t. I want him to be willing to try a new food and tell me whether he likes it or not. I want him to come home from school and tell me about all the cool things that he did that day. We’ve never had a conversation like that. These are the times that Autism makes me sad.
Luckily for me, these times are not often. I choose to stay positive most of the time. Sometimes it’s hard reading so many different blogs and articles because everyone has an opinion about how I should be raising my child. It makes me second guess decisions. They want to tell you what organizations to support, what diet to eat, where to go, what to read, who to follow and not follow. I want parents to know to trust their instincts for their child. Take what everyone else has to say with a grain of salt, and follow your own path. I stand behind my choices made about my son because they are made knowing I just want him to have the best life possible. At the end of the day, he is happy and he is so loved. The rest of it will work itself out.
Tracy is a proud mom to her 4 year old son and a beagle, and a proud wife to her loving husband. She has visions of starting her own blog when she has the opportunity to work less. She also has dreams of making a difference in the Autism community to help other families and children. She also has small but healthy addictions to Starbucks, Twitter and Chocolate.