Jan 27, 2016

The Truth about Autism

Getting brutally honest and brutally real today on the blog. 

I've said it quite a number of times on the internet. My older brother has autism. It's rough - not going to lie. Many siblings of children with special needs will either hide in this make believe "life is good. life is magical. life is wonderful" type of world... or they are insanely depressed and feel like no one ever pays attention to them. For that reason, I do not have any friends that have siblings with special needs. I'll never forget this "sibling conference" I went to when I was about 10. My mom signed me up because someone had whispered in her ear about it, and I went with this girl I knew from school who's sister had some pretty profound health needs. I learned at that meeting that I didn't fit. That my parents had chosen to "handle" the situation in a totally different way. I learned that the girl I went to the conference with felt unnoticed and unloved at home. She was depressed. From talking to the other children that were "in the same boat" as I was... I learned I stood out. I was supposed to hate Isaac. How could I love someone who had autism? How could I love my own brother after all the crap I go through? How could I? These other kids just couldn't understand... and I couldn't understand their perspectives either. It blew my mind that on the Wanted poster activity we had to do (quite possibly one of the dumbest things I've ever done in my life) that the majority of the kids in that room either drew their parents or their sibling on that poster. The best part about that conference was the Little Caesar's pizza. I didn't learn any "coping skills". I didn't get a new friend "who understands exactly what I go through". I didn't get crap from that dumb conference except complete and utter gratitude towards my parents for raising my siblings and I the way they have. 

What is autism?

For starters, I seriously cannot believe you don't know what I'm talking about... 1 in 68 children are diagnosed with autism. The disorder is nearly 5 times more common in males than females. More than 3.5 million Americans have autism. 

Defined by Autism Speaks as: Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.

Like I said earlier, Isaac is my older brother. We are 18 months apart. Meaning, I've never known a world without Isaac or his autism. 

Whenever I start to talk about autism, minds always seem to wander to those adorable todlers who yes, are a little off... and it is obvious that they have some special needs going on, but minds tend to wander to those who are higher functioning autism. Sadly, Isaac is not the most highest functioning teenager with autism, nor is he the least functioning. Making him just smart enough to get what he wants (ex. cookies, a jar of peanut butter - yes the whole thing, bunches of bananas or a bag of chocolate bars). If he was lower functioning he would have a more difficult time gaining access to those things he wants than he does now. Did any of that make sense? Cool. Let me continue to blab my thoughts. 

As other readers may know, Isaac is not my only sibling. I have two younger siblings. I've never really known what it's like to have an older brother to look out for me. My friends have older brothers that are so involved in the guys they talk to, offering helpful advice, and I don't know there's just things I miss out on. I've always been the  "older sibling" even though Isaac's older than me. I've had to stand up for Jonathan and Tirzah on my own, I can't boy bond with Jonathan and answer his disgusting yet necessary questions regarding puberty and girls nor can I give Tirzah the same advice that I would expect from an older brother regarding boys and all that jazz. Please know that I'm not intending for this post to be a "what could have been" or "what I wish" type of post. I love Isaac with all my heart and I love my life. But can't a girl just take a step back and darn it just say it's difficult for once? Anyways, Isaac's autism prevents him from being a typical big brother... but in many ways he still takes on that responsibility. When he puts his hand on Jonathan's head and says "Little Guy" and laughs and points to himself and says "Big Guy". Or when he holds Tirzah's hand when we're hiking and it looks like he's guiding her along the trail... but we all really know what's happening. Or those quiet moments when Isaac and I sit on the couch deciding what to watch on Netflix with a bag of popcorn or crackers or heck even carrots and the dog on his lap. When he randomly but ever so perfectly timed butts into the conversation with "Oh yes!" or "Weird" or even just a simple "Hello there!" when I walk in the door. 

One thing that you will most likely never catch me say out loud is that I love Veggie Tales. You know the Christian cartoon with the talking vegetables.... Bob the Tomato and Larry the Cucumber? I've never known a world without them. Isaac grew attached to the accents, voices, characters, plot lines, stories, songs... everything at an extremely young age and the rest of us have been stuck with this fascination since. I know almost all the words to literally every song and episode... Is that sad? Most definitely. But without Isaac in my life I never would have known about the Veggies. Almost everything Isaac says is in a particular Veggie character's voice. Almost all the words he knows are because of these episodes and he can almost always be found carrying Veggie Tales VHS tapes along with his Veggie Tale calendar. 

Let's get more into the fact of the matter here. Life isn't all sunshine and roses- Veggie Tales reference there. It's painful. Physically and emotionally at times. PSA: You can not "catch" autism like the common cold. It does not spread through the transfer of bodily fluids. DOUBLE PSA: No one freaking knows what the official cause of autism is. Fun, huh? I seriously can't stand it when people find out he has autism and then proceed across the room far far away. IT'S NOT CONTAGIOUS. Whispers and mean words said by others don't affect Isaac in the least. He has no social awareness where some other higher functioning children affected are extremely aware of what is said around them. Whispers and words like "retarded" don't hurt Isaac. But can I just say, they hurt me. Deeply. I cannot even begin to explain to you how hard these children I know with profound special needs work just to make it through another day. For little things and activities that we find a piece of cake, could potentially take all day with a child with autism. Another thing I hate? When people say autistic. HELLO he's still a person. Physical pain is where I get to be honest. Isaac's behaviors can include aggression at times. Of late, most the time. When I was younger, I would tell my siblings not to worry about Momma because she's "brave like Mulan". No kid should have to say that about their brother and mother to their concerned younger siblings. There are scary moments upstairs at times when I honestly don't know what to do. What I do know is that yelling at Isaac only makes his behaviors escalate. You can't cuss or say anything you would want him repeating, ever. You have to handle painful and frightening situations with a calm but firm and strong attitude - something I was decent at from about 12 years old or maybe before that. That's something I wouldn't wish upon anyone. I protect my siblings and try to keep everyone safe. Even with all I do, my parents take the most of it... which is difficult to watch. I mean who wants to see their parents attacked? It's hard. Heck I'm crying writing this post. It's really hard. 

I've seen so many behaviors from Isaac over the years. Some are pretty scary where others are just funny and strange. It depends on the day. His moods can change in a split second... which doesn't help either. There are certain things my family cannot do. Certain tours, museums, and basically any place that requires you to be quiet or wait for something. Where no one particularly likes to wait.... Isaac really doesn't like to wait. When we would go to Disney World, we would have to request a separate place to wait the current wait time for the particular ride just so Isaac wouldn't have any behaviors or scare any other guests. I could see from the way I'm describing this situation to you all, you might be scared for some safety or something or concerned about what there is that I'm not saying - because believe me there are specifics to hard to get into in a blog post. But there are some funny parts of his autism that you have to laugh at... otherwise you go insane or just want to murder him like those kids at the conference I told you about in the beginning of this post. For example, Isaac once made the entire Main Street Emporium at Disney World go deathly quiet with one of his shouts. The many sounds he makes have been known to creep people out in the restroom as well as at restaurants and just anytime really. Now that takes some talent. And like I said earlier, sometimes those Veggie Tales phrases are just so well timed... it's amazing. 

Again, I'm not asking for your sympathy, help, your "wow cath I'm so sorry this is what you go through"'s. God know's I've gotten enough for three lifetimes over the years. I don't need anymore. I'm well aware of the fact that my situation is not ideal. I do my best to live with it and make it seem and it is-- don't worry about me-- extremely functional. I've learned through the years that you just take life moment by moment and you can't freak out whenever life gets slightly problematic. Save the freak out mode for major pandemonium at least. 

Even with this imperfect reality, Isaac has given me and added to my life in so many ways that I will never ever change. Isaac is one of the most skinniest boys I know. Where most younger sisters steal their older brothers t-shirts, sweatshirts, and jackets because they're perfectly oversized and comfy.... I can't do that - it used to take a minor blow to my self esteem back when I was younger that I was bigger than him... but I'm okay with that now. We've worked around it and we share sweatpants from Walmart that are actually heaven on earth. He's taught me that if you don't eat your cheeseburger or ice cream fast enough, it could just disappear. He's taught me not to care what people think or are saying about you. I now know that greeting people with a big HELLO THERE is always a good idea. Whenever you have time to cook, you should. Keeping track of dates is very important as well. Without Isaac in my life, I would have learned none of those lessons. 

Like I said, I'm not asking for your sympathy. Actually I would extremely prefer it if you didn't comment unless you legitimately can relate to my current situation. I hate sympathy or when people feel bad for me. I love my life! I'm a happy person! I don't need your attention on this particular aspect of my life. I honestly just had to get these thoughts out there. 

So hey Isaac: I love you bud. So freaking much. Even though I have to watch myself and what I say and what I sing and watch, I still love you. I love hiking and borrowing your sweat pants, I love popping popcorn and singing Veggie Tales songs with me. I seriously don't know what I would do if Isaac wasn't in my life. My life would be extremely empty without his random aggression, phrases, or celebrating his made up holiday, First Day, or the first day of every month. No matter what Isaac, you are forever my travel buddy/might throw me off a mountain buddy/ little buddy. 

Does life suck sometimes? Hell yeah. But God always makes the best out of the worst situations and I just keep trusting in him and his plan even when I can't see past tomorrow. The scars are there, but to me, they're hope that God has plan for me and my trust in his plan. 

P.S. Hope you enjoyed the cuter pictures of Isaac scattered throughout this post & my apologies about how jumpy the entire thing was. When I have something I want to say, sometimes the thoughts and emotions come before my sentence structure. 

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