Submitted By: Eva Slagle
My older brother has severe autism and epilepsy. By severe, I mean he cannot take care of himself, he is cognitively at the level of about a 2 or 3 year old and he struggles to communicate. Along with the communication struggles come violent behaviors. I have my fair share of scars and experiences that I wouldn't wish on anyone else.
Sadly, these experiences do not matter to the powers in my state.
Isaac just turned 18 and he has also been moved up on the list for a care facility for adults with special needs where he would have 24/7 care and supervision. For the longest time, my parents have had to only discuss the violent behaviors to catch the attention of the powers in order to get Isaac placed in a facility. However, now that we are at that point where Isaac has been approved for a facility, and we as a family are now looking for a facility that meets Isaac's needs, we have encountered another problem.
No facility wants to accept Isaac due to the behaviors that we have previously described... and for obvious reasons. This situation is so bizarre to me. And I guess, as a means of coping, I have begun working on this new project. It helps me to take myself out of the situation and see it all from a photojournalist's perspective. I've been documenting Isaac's life lately - the good, the bad, and the utterly insane. In addition to documenting my brother's life, I'm also photographing my mom and dad and the situation's impact on them.
Due to Isaac’s lack of communication skills and inability to care for himself, he requires the full supervision of my mom and dad. He also needs full assistance in bathing as well as going to the bathroom. Isaac’s moods, especially in the Winter, are aggressive and difficult. He’s rarely in a good mood thus making the search for placement in a care facility that fits Isaac’s needs, an urgent one. My family and I have dealt with a variety of behaviors from Isaac - actions that are potentially harmful to himself, my younger siblings, myself, or my parents. He smacks his head when he gets upset and yells at himself to “calm down”. He will sometimes grab for my chest, arm, or neck when I don’t do what he wants like print out pictures of his favorite Veggie Tales VHS tapes. He pinches my sister when she doesn’t write events on his calendar for him. He’s attacked my dad while he was shaving him thus putting himself and my dad in danger. He’s also pushed my dad over and exerts every ounce of force into pinching my dad’s hands. He pinches my mom and grabs her from behind. My younger brother has learned that when Isaac makes his “angry sounds” it’s time to run into his room, lock the door, and hide until it’s safe. All of this didn’t matter to the powers that be in my state from the time he was able to pinch until a few months ago, and even now that he’s 18 and on the emergency placement list, the situation only barely matters.
In addition to all of Isaac’s aggressive behaviors, seizures have been a rather new development in our lives. Usually people with autism experience seizures, but Isaac didn’t have his first one until after he turned 17 making the challenge of finding a facility to accept him that much harder.
This situation has added a great amount of stress to my parents. Stress and tears as a result of years of “autism escapades” as I call them. Unexplainable behaviors such as putting his fist through one of the window panes as well as fighting for the Free and Appropriate Public Education that he is entitled to (FAPE) and even keeping up with a complex medication routine.
I hope the photographs I’ve been able to capture provide insight into an example of life with a person with special needs. Of course there are moments of total joy (I absolutely love my life so this project is most definitely not me complaining about my situation), but there are also moments of fear and frustration. Other siblings of people with special needs wouldn’t dream of discussing their life like this, and even parents insist on enduring their situation and keeping the behaviors secret. I refuse. I hope that these photographs could be somewhat encouraging to families in a similar situation. To show them that there are others who are struggling as well. But I also want this project to bring awareness to those who are not aware that living with a person with special needs isn’t near as cute and inspiring as others may make it out to be.