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.
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.