I woke up out of my deep sleep to the faint sound of my mother’s voice whispering my name.
I began to pry open my heavy eyelids when a stabbing pain shot from the back of my head down my neck. I squirmed in pain. My mother’s voice grew shaky. Almost instantly, I shot up with only one goal in mind: get the hell out of here.
I was still in the small bed I had been in earlier that morning. But now, cords, needles, wires were hanging all around me and clinging to my skin. Trying to get free, I felt like a bug trapped in a spider’s web. As I reached the end of the bed, all of these strangers came running into the room to help my mom stop me. I was held down and they were saying things to me.
I will not calm down.
But they couldn't hear me.
Hands were all over my body. I was being pushed down against the bed. The pressure of their hands was almost calming. Then, the shooting pain came back. I lunged up and saw some of the strangers go flailing back. Of course, my mom stayed still.
“Sammy, please calm down. I know it hurts.”
Yeah right! You have no idea!
All of the voices were blending together now.
“All of his IV’s are out, we’ll have to hold him down to put them back in”
What the hell are IV’s? Why are you people bugging me? Oh my god, my head.
Then these idiots were pricking my arms with needles and holding me down. The pain that came from my neck was way worse than these weak needles. But I winced with every stab. I let out a cry. I just wanted to be heard. I know it wasn't words, but it was something.
"It Wasn't Me" by Shaggy was playing, my mother was saying something to me, strangers were busily working. I think the TV was on, a phone was ringing, a baby crying down the hall. I just stared, as I felt a small droplet from my eye. I heard my sister enter the room, and soon she was apart of cluster of the hands holding me down
What the hell happened to me? This morning I was fine.
Then I remembered my mother sobbing by my bedside earlier that morning and saying, “I know it’ll hurt, but it’ll make you better.”
I jerked my body from the pain, clenched my teeth and heard one of the strangers curse under her breath. I heard my mom panting. I glanced up to see her look at my sister. They didn’t say anything but I knew what they were thinking, what they were always thinking, "I wish he could tell us what was hurting.”
My head hurts.
When your friend does something out of the ordinary, do you think to yourself... I need to change them? No. What happened to "Accept a person for who they are?" People with Autism are people too, this rule should also apply to them.
Just because flapping your arms or constantly covering your ears isn't the "norm" doesn't mean it isn't acceptable. Why are we trying to ABA the shit out of people with Autism? I get it, ABA is highly successful for many people with Autism. But why do we need to change every single behavior. that we consider "odd?" It isn't odd to him/her. It isn't odd to the Autism community. Things like stimming bring a person with Autism back to balance. Back to their normal. Back to feeling "sane."
How do we know that when we (the so called normal) use eye contact or when we don't keep everything lined up just right, the people with Autism aren't thinking, "what the hell? they are so weird!" They don't try to change us, why should we try to change them?
Obviously, there are behaviors that need to be taught not to be done because it can injurious to self or others. But why aren't we mainly focused on helping them acquire the skills they need to live? Like taking a shower, getting dressed, preparing a meal, filling out a job application, etc. Of course... those things are in their plans but should behaviors we consider "normal" even be a priority, at all? Who says we know what normal is?
I'd rather my brother or my clients master hygiene, job skills, safety, etc. Things that matter. My brother isn't something we can just perform experiments on. If we try A, this will increase/decrease the behavior of B and increase/decrease C. WHY IS THAT IMPORTANT? Pavlov trained his dog to salavate when a bell was rung... "trained," "dog." Humans aren't dogs. Humans aren't meant to be trained. Humans are meant to live. Humans are meant to be unique.
Sammy is unique. As is everyone with Autism. Actually, everyone on the planet. How about we start helping people with Autism learn to do the skills they need to be independent and the rest of the world work on adapting to the fact that there is no normal.
I am pleased to let all of you know how outstanding Sammy is doing! The hospital bed has been out of our house and he has been up and around for about two weeks now. I am so proud of his progress he has made! I was home for my birthday on Sunday and he is back to his old tricks - listening to his iPad, laughing and smiling, walking around, and playing with his toys.
The handsome man is back in school and is still on medicine, but has proven that he still knows what to do, regardless of the surgery. He's back to using his iPad for requesting and even has made a little progress with toilet training at school! It was so great to see my guy laughing and playing with me on my birthday -- even though he kept pulling on my bracelets and screaming in the restaurant.
He obviously still feels pain, we can tell because he pushes our hands against his head and appears frustrated. His scar looks amazing and is barely noticeable with his hair!
On another note....... Many of you know that I am apart of the organization, PALS. This organization is a summer camp for young adults with Down Syndrome where they have the opportunity to build independence, create lifelong friendships, and have fun. I volunteer there every summer where I am uniquely paired with an amazing camper and I have the best time of my life. We are currently doing our fundraising campaign and I was wondering if any of you would be interested in donating? It would mean the world to me and would be able to help PALS grow as an life changing organization! Please visit my donation page, or contact me for more details. THANK YOU!!!!!
Please continue to keep Sammy in your prayers! Xo.
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.