Florida’s Unseen Shame
A mother’s fight to secure treatment for her severely autistic son
There are no other cars in her driveway except the one with the dead transmission. Good, I
think, I've beaten the APD person here.
When my friend opens the door, I learn I'm wrong. The representatives of the Agency for Persons with Disabilities came early. "It went OK," she says, inviting me in for a debriefing.
As I walk inside, I try not to choke as the overpowering odor envelops me. The dog died months ago and was always housebroken, anyway. The cat stays outside.
I know it's her 21-year-old son who has soaked her bed sheets, her pillows, her carpet — everything — with his urine. The smell is much worse than it was several weeks ago.
My friend, Michele, has finally stopped apologizing for the condition of her home. Anyone who visits knows she doesn't choose to live this way. No one would. She makes a reference to the "better adult diapers," which don't leak as much, and how she's always fighting over the paperwork needed to obtain them.
"I have to fight for everything," she says. Her voice escalates when she's stressed — she often doesn't realize she's actually yelling. Who am I to tell her? Yell away, my friend.
Michele is one of the physically strongest women I've ever met, but at 53, she's getting tired. Her body is suffering, untreated. She supports her family, singlehandedly, by working half-days as a bookkeeper for a local advertising firm.
Don't ask about her disabled former-truck-driver husband who owes her thousands in back child support and alimony — unless you want a real yell-fest. She never gets a weekend or holiday off. If she forces the issue, she knows it's her daughters who'll be tasked with the care of their brother at their dad's house — if he lasts there for more than a day.
"When we get all this taken care of," she says, stretching out her arms, "I can work more hours and get health insurance and go to the doctor."
"This" is appropriate placement for her virtually nonverbal, un-potty-trained, "aggressive" and "violent" son, age 21, whose school day ends soon after what would otherwise be her lunch hour. "This" is a safe place, where he won't hurt himself or other people, where the staff is highly trained in behaviorism, a science to which, when practiced properly, her son responds. Until, that is, the divorce, or the change of schools, or some nameless, faceless bureaucratic "system" takes it all away again. Two steps forward. Three steps back.
Urine. Blood. Poverty.
We use the words "aggressive" and "violent" now because when an individual lives in a 250-pound, 6-foot-2, adult, male body — regardless of his mental age — we can no longer characterize what he does as a "temper tantrum."
Not when he hits his teacher and his mother.
Not when he smashes aquariums and glass windows, or puts a hole through the front door.
Not when he head-butts, kicks and punches the walls in his home, then tears out the drywall.
Not when he repeatedly reopens the wounds he's endured on his head, feet and hands, inviting infection and yet one more visit to the emergency room, one more call from the school to his mother, one more half-day of missed work, one more fifth of her meager, weekly income down the drain — again.
"The psychiatrist says if we Baker Act him, he won't come back from the trauma," Michele tells me. So she withstands the wait. She endures the fight.
When we get all this taken care of …
With all her might, with all her soul, all her being — for 18 years or more — my friend has valiantly fought. Her opponent? Her son's severe, profound and ultimately unmitigated autism.
State services bungled the first diagnosis, and thus bungled her son's educational treatment during his formative years. Not that they would have known what to do anyway back then — they were about 30 years behind best practices. The public schools know better now. That doesn't mean they always do better.
When my friend was married, when she had four children in her home instead of just two, she drove her younger son to psychologists, psychiatrists, therapists and, eventually, after she found a lawyer, to a private school paid for by a McKay scholarship.
She managed to drive him also to her older son's football games and wrestling matches, to his sisters' baton and cheerleading events. She raised one son who played college football and served in the Army; she's raised a daughter who completed a medical assistant degree. She's raising another daughter who's applying to colleges this year.
And she fights for the younger son, for whom she still has dreams.
She's seen glimmers of hope at his newest school, Palm Avenue Exceptional Center. The angels there know how to interact with her son until the end of each of her abrogated workdays.
My friend envisions her son learning how to use the toilet.
She can see him in a place with enough structure and activity and trained-up staff to help him replace his self-injuring behavior, or at least decrease it.
She sees him making friends in an appropriate group home.
She sees more than the permanent bruises on his hands and wrists that have resulted from years of his biting them.
She hears more than the loud, plaintive wails in the doctors' offices, the bank, or the store — and the reverberating screeches that bring the inevitable stares wherever she goes. "Everyone needs to see this," she says to me. "This is what autism looks like."
I saw my friend's son on the day of my visit. Sitting in the doorway to her bedroom, he was gratifying himself under his diaper and his elastic gym shorts, just after peeing all over her bed pillows.
"It's on the report," my friend tells me, referring to documents completed by her visitor from APD, and her son's distinctly indiscriminate and un-private acts.
How, I wonder, did APD document the suffocating smell of urine?
"I've got to see if the rental place has found a matching dryer," she remarks. Hers is broken. She pays $50 a month to rent-to-own the new washer, so at least she can launder her sheets and hang them up.
She's still way short of the cash she's going to need to renew the registration on another old car that a relative is willing to let her use. Christmas? Forget about it.
Maybe she can sell the car in the driveway for junk.
"I have faith," she says. "What other choice do I have?"
Michele's faith is bolstered and buoyed by the generous soul who gifted her son with an iPad, by the sweet lady who paid for someone to come replace her smashed-out front window with Plexiglas, by her friends at church. They all read her story in the Times-Union a year and a half ago, written by Matt Soergel and excruciatingly videotaped by Bob Self. You've been warned. Still, you really need to see. This is what autism looks like.
"Maybe I'll just sleep out here tonight," she
says from her perch on one of two loveseats. "I've done that before." She sits back, resting her injured foot upon the coffee table in front of her.
When all this is taken care of …
She remembers she needs to call her relative for a ride to work and hopes he won't need gas money. She also remembers to email the APD service coordinator to make sure the crisis packet has been signed, sealed and delivered to Tallahassee. Again.
And now we pray. We pray that someone who works for the state realizes that we are the state, and we don't work for computers or budgets or systems — these are tools that are supposed to be working for us — for people.
We pray that someone will see that by failing to serve the least among us — over and over and over again — we're putting entire families on the brink of homelessness, sickness and despair, every day. We pray that Michele's son will receive services he needs, so he can live a life of dignity — so his mother and his little sister can, too.