The Male Sibling Unit has spent the afternoon at a mental health-sponsored community center he visits at least twice a week. It was opened by the local mental health facility that treats the many individuals in our community with anything from mental disorders to actual mental and physical handicaps. I say “handicap” with no fear of being chastized by someone who has adopted whatever new terminology it is acceptable to use when identifying individuals with a permanent mental or physical disability. When I was a kid, the label “mentally retarded” was quickly going out of style as other, kinder words were being adopted.
Mentally Handicapped. To the point, if a little bit blunt. We used this for a long time.
Developmentally Delayed. I liked that one. It was kinda scientific but seemed sympathetic.
Special Needs. Now, this really takes you to a safe place, doesn’t it? In a vague, glossed-over way. Hell, I have special needs. My need for wine at 5pm could be construed as “special”, right? My need for the Skittles to be in pairs of two with different colored Skittles before going into my mouth is obviously special.
The latest, most politically or socially correct “labels” used by those in the mental health/educational community range from Cognitive Disability to Intellectually Impaired. Okay. Whatever. The bottom line? It all means the same thing, and there are varying degrees, conditions, and impairments. I quit giving a shit about how I refer to my brother or his friends and coworkers because at the end of the day, it doesn’t mean anything anymore. I know who he is and where he has limitations unique to him. The only word I cannot bring myself to use is “retarded” because, when he was 18 months old and my mother had been given the devastating, soul-crushing (for her) diagnosis, she sat me down and forbade me to use any manifestation of the word at all. It was officially a curse word in our family. It would have been better for me to have been caught calling some dumb boy in our neighborhood a “stupid, motherfucking cocksucker” than it would have been had I uttered, “You retard.”
The Male Sibling Unit has many “labels”. Our mother was 39 when she gave birth to him in 1975, and while that’s no big deal now, it sure was then. She was morbidly obese, smoked, and lived a very sedentary lifestyle, despite caring for both me and my grandmother, who had been partially paralyzed by a stroke when I was 5. My mother developed toxemia – we call it pre-eclampsia now – in her third trimester and had to be hospitalised for the last two weeks of her pregnancy. My brother was delivered at a bloated weight of 9 lbs, 5 ounces; he couldn’t even open his eyes because he was so filled with fluid. Even worse, there was a period of time, during his birth, when he was without oxygen and I will never forget the description in his records: bloated and blue. Still, the doctor got him breathing and everything seemed okay for a while. He was colicky at first, but sweet. He was a good-natured baby who drank his bottles and filled his diapers just like any other infant. I was 8 when he was born, so it fell to me to help. A lot. And I didn’t mind it, being a solitary, awkward kid myself.
When he turned 1 and he still couldn’t walk or even crawl, my mother was worried. Tests were performed. Xrays were done. A healed, hairline fracture of his skull was discovered. It was eventually surmised that he had hit his head on the edge of the kitchen table while in his walker. He had never reacted to what had to have been a painful event. But while running these batteries of tests, psychological ones were run, too, and that’s where all the labels came from. “Mentally retarded” was the first, and, as the years passed, “autistic” was another.
Was he born that way? No one seemed to be able to agree. It could have been the toxemia that interfered with his development in utero, but there was that “period of time” where he was not breathing, too. Both the Obstetrician and the Pediatrician were understandably defensive about that fact. Back in the late 70s, there were a lot of experts throwing their weight around, and it was eventually determined that the Male Sibling Unit would “never reach an intellectual age past that of a 4th grader” and require care for the rest of his life.
Those experts were stupid, retarded motherfuckers.
The Male Sibling Unit is developmentally delayed, yes. He is on the Autism Spectrum, too. He has OCD. He has various medical issues including Type 2 Diabetes and Hyperthyroidism. He is unavoidably, through no fault of his own, a narcissist. He does not feel pain like a normal person; his threshold is frighteningly high. He also is, as he refers to himself, “a horse’s ass”. Nothing could be truer when he is being everything on the list at the same time but it simply is what it is.
The OCD stuff is the worst. The fact that he has a cell phone, which tethers him to me and anyone else who is on his contact list, makes the OCD harder to manage. He worries about himself and his circumstances and his routines constantly and those thoughts translate into multiple text messages a day. He will begin worrying about his prescriptions 10 days before they need to be filled and remind me that he will take care of them. Every day. Multiple times. Until it is time to actually do it. He will fight with his friends and revisit the fights over and over. When a special event is upcoming – meaning it is weeks or even months away – he begins a daily countdown.
We discuss how he feels about every little thing, every single day. When you’re me, with my own, unique set of mental albatrosses around my neck, managing another person’s is challenging. There are days when I simply need that community center time, for him to go there for a while; to leave me to the peaceful silence of a quiet house. He’ll come home, filled with the happiness of a day spent with friends, and go up to his room to post it on Facebook. Yeah, you read that right. The “mentally retarded” boy who would “never function past a 4th grade level” is now a 42 year-old who has a robust social media life. It is quiet. I am watching a news program.
Then my phone vibrates.
And yet, I can’t imagine life being any different. I knew what I was in for when I swore to take care of my baby brother for the rest of his – or my – life. It is the most challenging, infuriating, frustrating, hysterically funny, wonderful reality. I’m going to write about him more, because it’s cathartic and also because he is one funny motherfucker.