These two things are something very common to every family. Every event or just because mom wants to capture a moment, millions of families are taking random pictures of their kids. In addition to this, when people think of church, they think of the family going on Sunday together. I haven't been home for church in a few weeks because I've been away at school and after experiencing it yesterday, I felt like it is something that definitely needs to be shared with everyone. It is something so simple and so routine, but it isn't for us.
My brother cannot stand church. I'll give him credit, some weeks, he does an amazing job -- sits in the pew, stays quiet, keeps his hands to himself. But more often than not, he is pushing past us to leave, humming loudly, touching others around us, standing up and walking around, etc. Most times, my mom or I have to take him outside of the church because he is just too loud that no one is able to hear what the priest is saying. This conflicts me -- Sammy deserves to be there just as much as everyone else and so many people give him dirty looks when he gets loud -- but at the same time, why is it so difficult to just go to church and be with God for an hour? Doesn't God want us there? Half of the time, Jack and I are left alone in the church while my mom takes Sammy out. Or when I am not there, Jack is left alone in the church or the entire family is forced to go outside. What is the point in going if we are restricted to the back where we can't hear anything? Even if we did stay strong and stay in the church, we can't hear anything that is being said because Sammy is yelling. Yesterday, I wanted Jack and my mom to have the opportunity to stay in the church for the entire mass. Jack and my mom are often forced to leave or are separated. I have the opportunity to stay in church with Jack or go with my mom alone, but these two never get the chance to be in church together without interruptions. Sammy takes his head phones to church to try to take control of the situation and prevent needing to leave -- doesn't always work. Yesterday, he pushed and bit my mom and me until I took him out. So, we sat in the back of the church where we could barely hear -- Sammy closed all of the doors that were open, he yelled and hummed, he listened to his music, he paced -- which is fine, and I understand that church can be over stimulating for him -- but why are things like this so difficult to do as a family? If we didn't take him, we would feel horrible -- but when we do take him, we're not really there as a "family."
After church, my mom wanted to try to take a picture of the three of us -- because it is almost impossible. There are very few of the three of us from all of the years we have been siblings. Sammy refuses to look at the camera, sit still, keep his hands in place. We tried at the diner which consisted of 15 pictures where Jack and I appeared to struggling to keep Sammy still or were smiling. Every single picture, Sammy was blurred because he was moving or looking down. When we arrived home, we attempted again -- only one of them (of 25) turned out "somewhat okay." In this photo, Sammy is looking, standing still, but is not smiling. After minutes of struggling, frustration, etc., the process almost seems comical (as you can see in the photo listed in this blog). This is what I mean though -- I love Sammy for who he is, but why does Autism have to steal away the simple things like allowing us to be a family in church or documenting our sibling relationship. Because trust me, all of the pictures listed on this blog are one of a million -- it took several tries to get them or we just got lucky that he was looking and smiling at the same time.
Autism from a sibling's point of view...
My name is Paige and I am 24 years old. I graduated from Towson University with a Psychology Bachelors Degree. I am now working towards my Master's in Education of Autism and other Pervasive Disorders at Johns Hopkins. I am also a Behavior Data Specialist at the Kennedy Krieger Institute Neurobehavioral Inpatient Unit. My younger brother, Sammy, is 19 and has Autism. He is completely non-verbal, unaware of safety, is not toilet trained, cannot get himself dressed, and has difficulty with everyday activities that we all take advantage of. He works harder every single day of his life than anyone I know and he always does it with a smile on his face. He is my true hero and inspiration and because of him, I have dedicated my life to advocating and creating opportunities for individuals with Autism. I hope that I can make him proud and this blog is just a small part of the awareness I hope I can create about Autism and support other siblings impacted by Autism. I love you Sammy - thank you for everything.