Or, Why I Hate The Beeachay At Crappy Lab Corp
"You can just wait like everyone else" a sour faced receptionist shot at me. "You mothers of Autistic kids always come in here expecting special treatment when your children are just as capable of waiting in line as any other child is."
No. She. Didn't. She didn't just go there.
These words were spoken to me 5 years ago but still feel like a fresh wound every time I go back to get CB's blood drawn. This is the story, told as if it were yesterday because sometimes that's how it feels...
It's 7:05 am at a Lab Corp facility where I need to get CB's blood drawn to check her med levels. The tiny, sterile waiting area is wall to wall with people, spilling out into the halls. The wait is likely close to an hour. CB, very severe on the autistic spectrum, does not handle crowds, cramped spaces, uncertainty, waiting, and other general realities of life very well. As she is utterly non-verbal, she has no other way to communicate her discomfort other than behavioral meltdown. I'm completely in a panic and feel the hundred eyes in the waiting room on me and my "different" child. People shift nervously in their seats as my daughter jumps, squeals, moans, drools, hits, and otherwise does not act like a typical citizen in a typical waiting room on a typical day. I feel like I have to apologize for being out in public. For corrupting everyone's "normal" lives with the abnormality of our presence.
When I realize the length of the wait, the conditions of the waiting area, and CB's difficulty with such sensory overload, I start to deliberate whether or not I should ask the staff people if any accommodations can be made for my daughter. Flushed, feeling conspicuous, fragile, and anxious I go to the front desk seeking assistance, empathy, and yes, I suppose a little special treatment. What I get is the quote from "Sally" with which I opened this post. "You can just wait like everyone else. You mothers of Autistic kids always come in here expecting special treatment when your children are just as capable of waiting in line as any other child is."
She can wait like any other child? No, you compassionless, ignorant shrew, that is the problem! She CANNOT wait like any other child. If she COULD I wouldn't be standing here in front of you humbling myself asking you for assistance! She is NOT any other child. She is not in control of herself. Her AUTISM is in control. Her brain is structurally different. She has the diagnoses of: chronic static encephalopathy, generalized seizure disorder, severe to profound mental retardation, and Autistic Disorder. She is disabled. She looks relatively "normal," but she is disabled. She cannot dress herself, bathe herself, brush her own teeth, open a container, buckle or unbuckle her seatbelt, manage her menses, cut up her food, talk... I mean, she eats her own sh*t for God's sake! DIS. AB. LED. She cannot "wait" in this overcrowded, fluorescently lit waiting room without making everyone's life a living hell. She is not spoiled. She is not poorly disciplined. She has Autism and cognitive impairments. Ever hear of it?
The audacity of me to request a little special attention! I am so sorry. How dare I cash in on a no-wait pass at Disney or a little respite care through Division of Developmental Disabilities. What a heinous, self-serving mother I am! And, to expect a little help at a facility that provides patient care? I am so used to getting my ass kissed because of my child's special needs that it certainly makes living with Autism so rewarding! Boy I'm making out like a bandit, alright. I get to cut in line at Lab Corp, which certainly counterbalances the fact that I also get to clean up her almost daily fecal smears, worry about her running into traffic, spend about a billion dollars to take care of her the rest of her life, and manage every aspect of her self care. I get to stress about the severe seizure disorder that has landed her in the hospital numerous times starting at 4 months of age. A seizure disorder that could realistically be the death of her. Please forgive me for my selfish request. I am not worthy. She is not worthy. She's only autistic after all. She'll manage. We'll sit and wait like everyone else, because after all, we ARE like everyone else, aren't we?!?
This whole thing made me wonder if this type of attitude was reserved for the disabilities that are less physical and perhaps less easily understood? The Invisible Disabilities. Had CB been in a wheelchair, hooked up on monitors, missing a limb or blind, would I have encountered the same resistance? I'm not sure. Maybe this particular woman was such a Beeeachay that I would have. But it seems to me, anecdotally at least, that when a child has ADHD, Conduct Disorder, Intermittent Explosive Disorder, Autistic Spectrum Disorder (especially "high functioning), Tourette's, or a psychiatric diagnosis sometimes people interpret the behavior as "within that child's (or parent's) control." At times, the less disabled you LOOK, the less accommodations and understanding you are given. At TIMES. Certainly, this is the exception. But when it DOES happen, it shatters you.
Clearly, in this case, the extent of CB's disabilites were "invisible" to Sally and therefore my daughter was deemed undeserving of any accommodations. If everyone else has to wait an hour, CB can wait an hour too. Now, I'm certainly not against CB being treated "like everyone else." In fact, that's my lifelong goal. BUT, I guess there is a caveat. Give her the same opportunites and value her quality of life the same as "everyone else." Treat her with the respect and dignity "everyone else" deserves. But, when she needs accommodations, give her a break! The kid didn't ask to be born this way. Can you throw us a bone?
So, what's next Miss Sally? Will a person confined to a wheelchair have the audacity to ask for a ramp? Will a blind person have the presumption to ask for signs in Braille or permission to bring their seeing eye dog into the waiting room? Last time I checked, accommodating disabilities was the law. Last time I checked, Autism and cognitive impairments were disabilities.
Who knew ignorance could be such a lethal weapon? Wielded like a dagger, it aims for the heart. Slashing at a wound as invisible as Autism itself. A wound that never stops hemorrhaging.
* This was originally posted on Autism Sucks