Fred Dickey

Fred Dickey is a writer living in Cardiff, CA, USA

MOTHER KEEPS GOING DESPITE HORRENDOUS CHALLENGES

Walking into the living room, it's like a garage sale had cleaned it out. Other than a couch and a couple of random pieces, the room is bare. There is also a strong smell of bleach. I raise my eyebrows, curious for an explanation.

Sadly, there is one. It's what has become of Sonia Camacho's life.

Sonia is waging a lonely, never-ending struggle in which her only defense is love. One would like to add hope, but there's not much.

She is caught in the grip of an epidemic. Scientists might not call it that, but they would reconsider if forced to live with the heartache that never leaves Sonia's house.

***

Sonia's modest home is on the edge of Imperial Beach and could fit into a hundred average neighborhoods in the county.

She tells me the front room is empty because her 10-year-old son, Rene, would tear it up if it had a coffee table or a nice floor lamp. If a TV remote were lying on the arm of a chair, it'd be the first thing crushed.

Rene is not a criminal; rather, a crime has been committed against him by a genetic devil called autism. It's an affliction that seems to be growing in society like mushrooms under an autumn moon.

Causes and cures are still elusive, although experts have learned a lot about this complex group of brain disorders over the years.

Autism is a disease with a broad spectrum of symptoms that can start in the womb and last into adulthood. In one common definition, it is "characterized by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors."

That's putting it more nicely than it deserves. You can bet Sonia didn't write that.

In straight talk, autism means that an innocent child that you brought into this world and love dearly can, by their actions, drive you to despair and frustration. It can make caretakers want to tear their hair out.

It can also derail parents' lives and smash marriages like dropped crystal.

Sonia Camacho is a trim, petite woman of 43. She has Rene and three daughters, ages 25, 11 and 6. She is college-educated and works as a part-time surgery technician for Sharp HealthCare. Sonia loves her job in the operating room, but she can work in that capacity for only a few hours a week.

I am surprised that she has numerous tattoos on her arms. I ask about that. She says the tattoos cover up scars from being bitten by Rene.

She also has a long-term marriage that is coming to an end. Her husband, Rene Juarez, loves his wife and his children. But after 10 years of living with autism ...

He. Just. Can't. Stay.

***

I follow Sonia into the kitchen, where she is completing the mopping up of another mess Rene caused. Bleach pervades like a pungent air spray.

It was an active morning for the boy. Sonia had inadvertently left out a bottle of liquid soap in the laundry room the previous night. Rene found it in the morning, turned it over and the entire bottle glug-gluged all over the floor.

Sonia explains that the living room - actually, the entire house - is stripped clean of breakable furnishings in the same manner as, to be blunt, you would find in a locked mental ward.

I watch her reactions as she describes all this.

Sonia, you get choked-up just talking about it.

She nods and dabs at her eyes. "Always. I always will for the rest of my life. But every time I speak of him, I always say Rene is a really good boy. He has severe autism, and he deserves our compassion."

Sonia remembers how she started noticing little alarming signs about her baby boy. "He was not making eye contact with me. No baby giggles. His motor skills were really poor. He didn't walk until almost 2. He would trip and fall a lot. He would smile on his own, just out of the blue, and I'm thinking, ‘What is he laughing at? What's going on?'

"I thought he was deaf. It was confusing, because if I spoke to him, he wouldn't respond to my voice, but when music was playing, he would turn toward the music.

"Everybody used to tell me, ‘Oh, my god, he's such a good baby' because he wouldn't cry. He would just lie down and be a very good baby. I'm thinking, like, ‘Oh, I'm so lucky.' "

Finally, the dreaded diagnosis: Rene has severe autism.

Sonia learned that the disease is on a continuum that goes from almost normal to nightmarish. And severe means nightmarish.

From that day, Sonia became - in her words - a prisoner.

Her husband was a career Navy officer, and for several years he tried to adjust and be helpful by taking care of Rene when he was off duty. But Sonia could see the burden of Rene's disease tearing him down. After all, this was his only son, and instead of playing catch in the backyard, he was sweeping up glass from a window that the boy broke for no apparent reason.

"My husband never screamed at Rene, never. Would the two of us get in arguments about situations? Yes. Would we scream at each other? Yes.

"But it almost seemed like he couldn't come to the point of accepting that his son has severe autism. When Rene would do something, he would say, ‘Rene, don't do that.' Of course, Rene would not pay any attention."

It was one thing after another. Exhausting. Maddening.

The broken window has been converted to Plexiglass. Sonia points to another window. It has no screen because Rene pushes screens out or cuts them.

The home's "popcorn" textured ceiling had to be removed because Rene would climb up and eat it. Forty feet of an outdoor plant had to be uprooted because he would go outside and eat the plant.

Sonia describes lying in bed half-asleep, waiting for the screaming to start. And it would. Rene might start screaming at 4 or 5 in the morning, and that's when the family day would start by ministering to his needs.

Sonia's husband couldn't deal with it.

"I remember my husband just giving up."

***

Sonia says her husband is a quiet man, and that's how the marriage is ending. He has quietly moved out.

In trying to cope with his son's autism, he became depressed and started drinking. The drinking became heavy and often.

After 20 years of service, Sonia's husband will be separated from the Navy in a couple of weeks, apparently with no pension. Also soon to be ending, Sonia fears, will be her military medical coverage. Although her husband has an excellent education, his re-entry civilian job prospects could be challenging - and thus her spousal support payments could be as well.

Despite being left alone, Sonia speaks gently of her husband. "He's a good person. He just couldn't handle it."

She might end up seeking some form of public assistance. From what I know of dedicated mothers, she'd beg for those benefits on bended knee if that were the only way to care for her children.

I make a business call to her bathroom, and looking around, I notice the room is stripped of towels and washcloths. I ask, of course.

Sonia answers with a will-it-never-end tone. "I don't have towels out because he sometimes, instead of using toilet paper, he'll grab the towel and clean himself. I'm trying to teach him you have to use toilet paper."

***

Mothers are made not only of iron and tears. They also stare into the pit.

Sonia turned to drinking, knowing her marriage was failing and finally accepting there was no magical cure for autism. But she learned that booze is fool's gold as therapy, and is instead a "gateway" drug straight to depression.

Indeed, Sonia was soon hospitalized for depression. "It was so severe that I didn't want to live because I couldn't find a cure for my son. I didn't have the strength to get out of bed in the morning. I didn't want to eat. I was always crying.

"Finally one of the doctors said, ‘I need to make you understand something: If you don't get better, you're going to lose your children.' That scared me straight. I didn't have to hear that two times."

Sonia was released and started to get the upper hand against depression after two years of medication and therapy. She no longer needs either, she says.

She realizes there are other children in the house. Rene's sisters had understandable feelings of neglect because of the attention devoted to their brother's care.

Sonia tells of a minor hissy-fit by her 6-year-old. "She goes, ‘It's not fair.' She went into Rene's room, pulled the blankets and sheets off his bed, and again said, ‘Well, it's just not fair.' "

Sonia describes a minor cruelty for a group of females under one roof: "We don't have the privilege of going shopping and to the malls the way other moms and daughters do. We have to go in, buy our stuff and get out super fast because Rene will start attacking the shelves."

It's a bit surprising, given her companionable personality, that Sonia doesn't put much value in support groups.

"You quickly find out that support groups are just a bunch of other families in the same situation. That is not necessarily supportive. We're exchanging miseries.

"How can I support you when I'm going through hell, too? But yet you still want me to put a smile on and pretend."

Rene attends special-ed classes that try to teach him little things such as counting, phonics and learning how to follow directions. He also has therapists who work with him.

Can he have a productive life?

Sonia purses her lips judiciously. "That depends. He will never be ... this is very difficult to say. He will always need help. Productive? No, I wouldn't say that. Not in a normal way. He's going to always need medical attention."

Have you thought about a home?

"No, never. This is his home."

Are you religious?

"I was raised Catholic, but I don't follow a specific religion. When I first found out about my son, I literally prayed to every god out there."

The subject of religion triggers a memory, a sardonic one. "The funny thing is, one time my dad ... my dad, he said, ‘I think you should do an exorcism on him.' "

Sonia leans forward on her elbow, adopting the narrow-eyed look she must have given her dad. "I went, ‘Really? Really, Dad?' He's like, ‘Yeah, we need to bring in a priest to do an exorcism on him.' I'm like, ‘No, I'm not! No!' "

Do you think as Rene gets older, he could become dangerous in some situations?

She looks away. "To be honest with you, it would be ignorant of me to say no. I'm doing everything I can to teach him not to be dangerous, to teach him respect, to teach him self-control."

***

Sonia's family and her grown daughter help with Rene and the other kids, and that allows her to get away for her part-time medical job. Also important to her is a nonprofit organization she founded a year ago. Its purpose is to help families make physical modifications to their homes to accommodate kids with autism.

She has started in a small way by helping with house painting and structural changes. Her group does the work itself and hires some workers to do specialty tasks.

I ask its name.

She smiles a bit sheepishly. "We call it Autism Home Repair and Modifications (on the Internet and Facebook)." She hesitates, looking for approval. "Is that too long?"

No, Sonia, that's great. That's called a double entendre; it can mean two different things.

She smiles widely. "That's what I thought."

I ask if potential donors might worry that such a small organization might misdirect their money, to use a delicate word. People have been burned.

She nods vigorously. "Yes, yes, yes, yes, I know, but not by us."

I tread lightly here. I'm just going to be straight with you, Sonia: You must know the chances of a new marriage are not great. Few men would step into this situation.

"Absolutely true. I know that. To be honest with you, I have accepted that my life revolves around my son and my girls. But I also have another mission to fulfill. I feel this in my heart. I will help other families that live with autistic children."

Are you frightened about the future?

"I can't afford to be."

***

Lording it over Sonia's front yard is a giant old oak that umbrellas the whole yard. Leaving, I stop to look at it and remark that the tree might be 100 years old.

Looking up at the branches, then down to the toys littering the thick base, Sonia says quietly, "Sometimes, I feel that old."

 

Fred Dickey's home page is freddickey.net. He believes every life is an adventure and welcomes ideas at [email protected]

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