Reader “T” reminds us of Matt Baldwin’s fantastic post from a couple of years back, discussing the discovery that their 18-month-old son had been diagnosed with autistic spectrum disorder.
But his “gaze avoidance” tendencies are unmistakable, and he makes very little effort to communicate with others. He knows dozens of words but only uses them for labeling. Show him a banana and he’ll say “banana,” but if he wants a banana it apparently doesn’t occur to him that saying the corresponding word to us might provoke a response. When he is in the company of other toddlers he plays around them rather than with them. And he rarely engages in imitative play.
The post culminates in a beautiful rumination on what loving his son is like for Matt—it’s apparently a lot like going overboard at Arby’s.
When I was young, my mother, step-father, and I all lived in an apartment attached to a mental health care facility, taking full-time care of a dozen mentally retarded patients. (And yes, I know that mental retardation and autism are far removed, but that’s not my point.) I recall one man, whose disability had left him bent in a wheelchair, but still relatively sharp, mentally. His parents had put him in the care of the state after many years of trying to take care of him at home.
They were nice people who genuinely loved their son. They’d visit at least once a month, often bringing small gifts for their son and I to play with. (One of the best things about being a kid who lived with MR patients was the vast number of toys they owned. Their closets were like state-funded toychests.) Once a month might sound infrequent, but considering how many people are dropped into the state health care system never to see their parents again, it was far from the norm.
For years I’ve callously said that I paid my mental health care dues as a child, and that’s true enough if I were talking about working in the field, I suppose, but I’ve often gone on to brag about how I’d never let a mentally retarded child of mine come to term. No tip-toeing through the eugenics garden for me, no sir. If any child of mine was less than perfect from womb on, I’d hit the reset switch and try again.*
The notion is not entirely without merit, although it’s cruel, and I often take foolish pride in my cruelty, or at least the veneer of it. Reading Matt’s story, feeling the unfair worry about his son’s future, makes me realize that those who take care of children with health problems do it not out of a sense of duty but of plain ol’ all-consuming love. So many people, when faced with the challenge of raising a kid with a disability, fail completely. Those who don’t give up should be lauded and admired.
ASD [DefectiveYeti]
* No gay son of mine is going to be not gay!
Love the Mr. Show reference…
This reminds me of an article I saw on Salon a few years ago, really fascinating and horrifying account of the struggles of raising a child with autism. The tagline is “Last summer, a man in California shot his 27-year-old autistic son to death and then shot himself. I understand why.” It’s definitely an eye-opener about what the disease is, and the reality of the day-to-day struggles.
http://archive.salon.com/mwt/feature/2003/09/27/autism/index.html?pn=3
I work as a systems manager for a major ARC in upstate New York. Admittedly, when I took this post I was afraid of what people would think and how it’s such a “step back” from my previous work, (previously I was a network engineer for a tele-radiology firm).
I came to the shameful realization that the “consumers” as they’re called are more insightful, more genuine and have more heart than I could ever hope to possess.
Each day for them is a constant struggle. They KNOW they are not like you and I. They give everything they have and struggle with the stigma of what it is to be developmentally disabled. Just waking up for them and living their lives takes more balls than most of us possess.
So, yes. I’m humbled. More importantly they’ve given me the chance to grow and not be such a shallow individual.
Also- it’s important to recognize the direct care staff that encourages and enables them to live to their full potential.
One thing I was not aware of was that developmentally disabled adults face the same amount of suicidal crisis (especially at xmas time) that the rest of the non-developmentally disabled population does. For some reason that was a huge wakeup call for me. I was such a shallow and uneducated person that I didn’t realize they experienced that kind of pain.
In closing, I am proud to represent the organization I work for. Education is key, and my hope is that more people realize what I have come to- that developmentally disabled people are pure magic and we have much to learn from them.
Best,
Chris
Wow, Joel, stepping outside the box! This fatherhood week is quite the change from the typical narcissistic dethroner stuff. Deep looks good on you.
My mom is the regional autism specialist back in my hometown area. Her stories could make crusty sailors cringe and blush. My dad is a counselor and regional director of halfway houses for the mentally ill, and his stories are even worse. So, as the father of three boys I am thankful every day that they have normal brains and bodies. Normal kids are hard enough to raise; I have nothing but the utmost respect for parents that can deal with the disabled, and sympathy for those that must give them up.
@joflow, I enjoyed the article, thanks.
@cmarsh, keep up the good work!
Having worked in the field of mental retardation for nigh on 30 years, I find myself constantly fighting the urge to take offense when the conversation turns to people with mental retardation, autism, or any other developmental disability of some labeled sort. In all my years, I’ve only met a handful of persons with mental disabilities with whom I didn’t have an instant mutual admiration and humorous relationship exuberantly genuine in its honest simplicity. Simply put – I love the way they love me and it causes me to reciprocate. Their expectations of me are low. My expectations of me with them is high. I have found the need, both real and/or perceived by years of sensitivity training, to protect the entity that they are. I have worked with people from the days of locked down institutions with caged beds, straight jackets and restraints, followed by a nice shot of Thorazine that the “professionals” thought was the easy way to handle a set of people who didn’t always conform to being treated as less than human. (And, I was in a humane institution…some of the institutional green hallways in other locations were fully equipped with hooks on which to chain persons to keep them from “acting out” during their unstimulated, victimized, tortured, and lonely drugged up, bored, bored day). When you talk with persons who lived through that experience, they will tell you about being beaten with sticks and paddles, having cold water sprayed in their faces, and abuses of all sorts. And, although they remember, they appear to hold no grudges. Theirs is a life of survival, forgiveness, and a propensity to hug…a state much harder for the rest of us to achieve with an authentic smile on our faces.
I’ve never had to deal with the experience of bearing a child with a mental disability but I know that if/when parents open themselves to the adapted possibilities, they are often given a joyous journey.