Looking Beyond Just Looking

SIBLING TIES BY PAIGE TALHELM

As Sammy’s older sister, I need to look out for him and make things better for him.

My brother was diagnosed with a seizure disorder when he was a baby. He has been on anti-seizure medicine all of his life. When he was just about 13 years old, we tried to take him off of it but he had two Grand Mal seizures in a span of 12 hours. It may be one of the scariest things I have ever witnessed.

For the next few months my brother experienced a huge mood change and rapid regression in many of the skills he had mastered or was about to master – including toileting. It is the biggest and most crucial skill that my brother still struggles with today, at 18. My brother still wears diapers.

Seeing what seizures can do to humans is so heartbreaking. Not only are people like my brother struggling every day with one diagnosis, like autism, to complete daily living tasks, feed themselves, be independent, but a seizure can set all of that back to square one. Everything my brother had worked towards for the past years had vanished or barely existed. In addition, Sammy had never been an aggressive or angry kid. His moods became terrifying, and he was clearly not the Sammy we all knew.

With most diagnoses, problem behaviors, sicknesses, health issues, etc., there is something to do to intervene. Even if it is not instant, there is something you can do to get rid of the problem, or help with its symptoms. Other than anti-seizure medicine to prevent seizures from happening, in the moment, there is nothing you can do. The most you can do is move things out of the way that may hurt the individual while they are convulsing or turn him on their side so he does not aspirate. As a sibling, it is excruciating for me to watch my brother or another individual go through a seizure. All I can do is step back and wait for it to be over. Of course, there are further actions to be taken if the seizure lasts a certain amount of time, but I can’t help but think – why am I just watching? There has to be  something I can do.

I think the worst part is that you can see it happening. You can see their body thrashing around and their muscles tightening up. Whether it is a Grand Mal or an Absence seizure, it is so scary to see someone who is there with you 100% the one minute – and then instantly fall to the ground or stare into space the next. You can’t get them back. All you can do is wait. And if they lose skills or regress, like my brother did, it is like I am watching him lose himself. It feel like I let it happen. Even though there was nothing we could do, it was like I watched all of that knowledge be wiped from his mind. And all I could was, nothing.

Even though there isn’t a cure for autism – and all I can do at the moment is wait or hope therapies help my brother  with his symptoms – there is nothing like standing by and doing nothing. Thinking back to that feeling I felt when I just watched my brother convulse, it makes me wonder how can anyone just stand by and watch someone be attacked? Or cry out in pain? Or be verbally abused? How can people “overlook” a homeless individual asking you for change on the street? How can you ignore him or her? No, I’m not saying get out your checkbook and write a big check. Even if you are uncomfortable saying anything at all – is it going to hurt to just smile? I watch people put their heads down everyday as they pass by a homeless individual. As they see a couple fighting. There’s plenty of stories where there were many bystanders who stood by and watched an individual get attacked or killed. The world scares me that we are so detached from each other.

Although watching someone have a seizure and watching a human be attacked are completely different things, I never want to feel the way I did with my brother’s seizure – that is, standing by and doing nothing. It can be a feeling of hopelessness and desperation when you are totally unable to help someone you love. As Sammy’s older sister, I need to look out for him and make things better for him. You know what’s worse? It’s that he can’t help having  autism. And he can’t just snap himself out of a seizure and think, “I better stop, I may mess up my body.” He can’t snap out of a stimming and think, “I better stop; people will think I’m weird.” So what’s worse? Not being able to “snap out of” something even if you want to? Or not being to help someone even when you want to? I continue to think of these things.•

1

SIBLING TIES
Paige Talhelm is 23 years of age, living in Baltimore, MD. She graduated with a Bachelor of Arts degree in Psychology on May 2015, and is pursuing her Master’s degree in Education of Autism and Pervasive Disorders at Johns Hopkins in Fall 2015. She is also working on the inpatient Neurobehavioral unit at Kennedy Krieger Institute. She hopes to one day create a program for continued education, job searching, life skills, and more, for individuals with autism, age 21 and older. She is a director of Camp PALS Poconos of PALS Programs and Advocate for The Next Step Programs. Read more about her life as Sammy’s sister on her blog: www.sammyssister.weebly.com

Leave a Reply