When you think of a holiday, most people think of their family sitting around, playing games, and laughing together. But lets be real, although all holidays end up to be perfect in their own unique way -- holidays are usually full of siblings bickering, grandparents shouting because they can't hear, mom freaking out because dinner isn't ready on time, etc. For us, holidays are just like this, except we don't really have any family. It's just me, my brothers, and my mom. So the "freak show" of a holiday that every family experiences has seen nothing yet -- come to my house for a holiday and you'll see Autism runs the holidays.
We try to have as much family time as possible during the holidays. We feel guilty when we have to put Sammy in his room -- but sometimes its necessary in order to get the house in order and get meals prepared. We usually have our one set of cousins come over for dinner on Easter and Thanksgiving -- so while my mom is trying to juggle the housework and preparing dinner, she also has Sammy right under her feet. Totally unaware of danger -- putting his hand on hot pans or sticking his hand inside boiling water. He enjoys mixing drinks so he'll take anything -- dirty dish water, apple juice, soapy water, cleaner, etc. that sitting out and dump it. And half the time he misses, creating a huge mess. He eats like a goat so if we try to distract him from bugging our mom with a snack, we chews and half of the food ends up on the floor creating an even bigger mess. Then, if he decides its time to eat, he will pull on my mom while she's cooking and pick up plates off of the made table. Basically, getting dinner prepared with Sammy is a shit show. He loves food and damned if he will miss out on any of the preparation.
This year, in addition to all of this, while in church, we were forced into the overflow area because you know, people who never go to church all year are there today. So, in the cafeteria, we kind of let Sammy wonder thinking it would be easier for him. But what happens? We look back and he's turning the "stop light" on and off that the school obviously uses during lunch time. Then, when I was standing with him and actually trying to pay attention to what the priest is saying, I miss that Sammy is pulling down a wreath of eggs. It slams to the ground and shatters. Awesome. My friend, my family, and I laughed it off -- but really?
Holidays are a mess, but I wouldn't change them for anything. I love my brother and although he might drive us crazy during such hectic times -- now that I'm writing it, I'm laughing at the fact of how crazy we got or how Sammy threw down the one breakable thing in that cafeteria. Like one of our friends said in church on Easter, "they just do what we are all thinking." This proves that Sammy has confidence -- and definitely a sense of humor.
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.
Coming home this week for spring break is always something I look forward to. I miss Sammy so much when I am gone and I am unsure if he understands where I am while I am gone. I was greeted by a huge smile on his face and when I said hi, he leaned in and gave me a kiss on the cheek. These are the little things that mean SO much to me. Knowing that he is excited to see me makes me so happy and I cannot even describe the feeling it gives me.
So far, I was able to go to one of neurology appointments while I have been home. He goes to see the neurologist twice a year for check ups and to see if there are any changes we need to make for him. Sammy has Epilepsy so he has been on anti-seizure medicine for as long as I can remember. I have only witnessed one grand-mal seizure that my brother went through during the entire 15 years I have known him and it has got to be one of the most scariest things I could see. You can't do anything and its just so different from anything else you've ever seen.
Because Sammy cannot talk, the neurologist relies on my mom, his team, and me to tell to him what is going on with Sam. We can't ever be sure though because he can't tell us. Could you imagine? You have the worst headache in the world and you are unable to tell someone that's what hurts. So, they go through a series of things to try to figure it out -- which is probably more irritating than the headache. What if we never figure it out? What if he just has to deal with it while the rest of us can go lay down or takes some medicine.
Going to appointments with Sammy is definitely an experience. We bring his iPod and headphones so he will have something to do. However, getting to take his height, weight, blood pressure is almost impossible. Getting him to stand up straight or stand still is such a challenge because he doesn't understand what we're doing and why we're doing it. Then, instead of the doctor being able to tell Sammy to grab a specific object or look over at something, he has to guide his eyes and hands to see if the coordination is there. Everything is adapted. Including the MRI that he wants Sammy to get to just have a "check up." He has to be sedated for it because he will not sit still and it will freak him out. Could you imagine if you had to go to all this appointments, let alone have to adapt everything so you could get it done correctly. It's crazy. This is what I'm talking about though, we take the little thing for granted. We take advantage of having the skills to get dressed, unzip a bag, getting our blood drawn, etc. It's not always about what the answer is or what the test says at the end of the day, sometimes its just how you got there or go it completed.
I'm sure many of you have watched "World of Jenks," but basically, a young man, Andrew, spends a year living on and off with three individuals. The one individual that I am particularly interested in watching is Chad. Chad is a young adult with Autism. Chad is graduating from school and struggling with Autism. Although Autism is such a large spectrum and each individual is completely different from the next, watching Chad have a girlfriend, went to prom, etc. -- it really gets me thinking about my little brother.
On the newest episode, my mom and I were so happy for Chad having the opportunity to go to prom, have someone love him, and get his first kiss. But at the same time, our hearts ached for Sammy. First of all, I don't even know if Sammy thinks, "this isn't fair, all of the other kids are driving, going to prom, etc." I don't know if that hurts more or if there is a possibility that he will never get to experience that kind of stuff. I know it sounds so pessimistic to say that he won't because I really hope he one day will -- but I don't want him to miss out on anything. Sammy is 15; he should be getting excited about getting his driver's license, hanging out with his friends at football games, thinking about college, and flirting with girls. Those are the norms. What is normal? I accept my brother for whole he is and I love him for all of his strengths -- I don't think there is a "normal." But, I don't want him to miss out on these so-called "norms" either.
Many tell my mom, my brother, or me that we do amazing things for Sammy. We're just his mother, his brother, his sister... we aren't anything special. Yes, I think that we each have our own special part in Sammy's life and we each do great things for him -- but none of us measure up to the remarkable kind of young man he is becoming. Not only is he unable to share his wants, needs beliefs, thoughts -- but he misses out on things that are perceived as "the norm." Jack and Sammy are so close in age. Jack has a girlfriend, he's getting ready for high school, he wants to be with his friends -- whose to say that Sammy doesn't have these same wants? Just because he has Autism, doesn't mean he shouldn't be able to experience it. This entry isn't about what Sammy is left out of -- it's about what Autism takes away from him. My mom said to me earlier today, "I appreciate everyone's positive comments but it doesn't take away the pain of Sammy having to face challenges." I get that. As his sister, I don't want him to face challenges -- I don't want him to struggle with things that everyone else can do without even thinking twice. I don't want him to have to settle for just hanging out in the presence of his family or our friends. I don't want him to go through his life without his thoughts and ideas not being heard. I want Sammy to get the happiness out of life that he deserves.
Over the years, I have experienced the ignorance of society when it has come to my brother. After 15 years, it still shocks me when people will made rude comments or be completely inconsiderate. Sammy looks like a normal 15 year old, but after watching him for 30 seconds, it is pretty obvious something is going on. Even those who still don't understand, I just can't believe how rude some can be -- or that some of these people will put their noses in our business when we are complete strangers to them.
An experience is one from most recently, when my mom, Sammy, and I went to the grocery store. Sammy loves music and he brought along his headphones so grocery shopping would be a little more "fun" for him. One of Sammy's strengths is that he will almost always stay by the cart and wait while we pick things off the shelves. So, while my mom and I were trying to decide between one product and another, I suddenly heard someone's grumpy huff. Instantly I turned around to make sure Sammy wasn't in her way when I noticed this older lady nudging him with her cart and saying "Come on son" under her breath. Lets stop for a second, the kid has headphones on -- what makes you think he can hear you when you are speaking under your breath? But more importantly, what gives you the right to nudge someone with your cart just because you can't get around? There's a better way -- tap him on the shoulder, say exuse me, or get our attention. Anyways, so I pulled him out of the way and told the lady, "He has Autism, he can't help it!" I could tell by the look on her face that she didn't understand, but yet was not embarrassed. When I walked away angrily with my brother, my mom turned to say something to the lady. The lady did not regret her actions and responded to my mom, "Whatever." No apology? Nothing. She didn't even try to explain that she didn't understand. So, not only was my mom and I hurt on behalf of Sammy -- but what was Sammy thinking? Was he embarrassed? Was he pissed? He was just nudged, scolded, and judged by a complete stranger for something he cannot help. To this, I ask -- what is wrong with society today? People can't wait five seconds without getting frustrated, yelling, honking their horn, etc. Where is the fire? Why are you in such a hurry? Why are you so angry?
I used to think things like this infuriated me -- and I guess they do on a certain level, but in the end, I think it just hurts. I try to see the good in everyone and it pains me to know that I give everyone so much credit. I think that there is good in everyone -- but then they're just so hurtful and mean to someone so innocent like my brother. Things like this eat at me. I'm protective of my brother, for obvious reasons, but it eats at me because I am concerned for people these days. People are so wrapped up in themselves that they can't take 5 seconds to hold on, look around, and see what's going on.
Like last night, I went with a group of ladies with Autism last night to the Towson Gymnastics meet and one of our participants was a little loud and wasn't aware of her surroundings. She continued to lean forward and touch the lady's seat that was sitting in front of us. She wasn't hurting anything though and any sporting event is loud! Finally, the lady turned around and said, "Why don't you keep your hands to yourself?" When one of us tried to explain that she had Autism, she told us to control her. Not only 3 minutes went by and the lady got up and moved to another spot. Society wonders why the youth is so inconsiderate and entitled these days -- look at who raised us! People who can't even stop and try to understand another's differences, struggles, etc. If you can't learn to accept others for their differences, what makes you think that younger generations will?
My brother, Jack, showed me this song, "Same Love" by Macklemore a few weeks ago (video below). It really speaks to him and me. People are made fun of, labeled, hated because of their disabilities, sexual orientation, race, etc. -- why? We all still have a heart and a brain. We all breath, we all have feelings. We aren't different. These are just the things that make us who we are. Weren't we taught to never change for anybody else, let others accept you for who you are, be who you want to be, being you makes you unique?
I've always wanted to start a blog about my brother, and I think that today is a good as time as any. Today is the annual awareness day for the Spread the Word to End the Word Campaign. The campaign's goal is to spread awareness about why the word "retard" is hurtful and inappropriate. This organization has always been very important to me because I grew up in a home where saying the "r-word" was worse than failing a test, and I grew up among the generation who constantly uses this word to describe someone or something as stupid or foolish.
My brother means the world to me, he has touched my life in ways that I cannot even describe. I wanted to start this blog so that he can touch lives like he has touched mine, our mom's, our brother's, and many others'. I am the person I am because of him and I have learned more from him from the countless classes and jobs that I have participated in. For someone to have so many obstacles and still get up everyday with a smile on his face amazes me. Watching Sammy go through each of his days made me realize how much we take for granted the simplest of tasks. He works his hardest to get dressed, communicate, do things like get a bowl out of the cabinet, etc. He is the hardest worker I know -- which is why the "r-word" infuriates me. By using this word, a person is saying someone or something is "less than ideal." My brother isn't less than ideal... he is perfect.
I know that many people don't understand this campaign or why this word can be hurtful. Why is any word hurtful? Just because you don't mean what you say to come across as hurtful, doesn't mean there isn't someone passing by or the person you're talking to isn't negatively affected by it. I understand that many people use this word, just like they use a word like "fag" (which I also disagree with its inappropriate use). That's what this campaign is about -- to make people aware of how much words can hurt.
Does Sammy look like a retard? Does Sammy seem like he is "less than ideal?" No, and no. Sammy is amazing. He is my hero, all I am is his sister. Please stand up for him and others like him... please PLEDGE NOW at www.r-word.org and encourage others to do the same. Remember, today isn't the only day you shouldn't use this word; this is a worldwide, year-long campaign.
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.