Fred Dickey's Island of Human Drama
CHALLENGING SONS CHERISHED BY DEDICATED, PROUD MOM
CHALLENGING SONS CHERISHED BY DEDICATED, PROUD MOM
By Fred Dickey Sept. 12, 2016
Kathy Koeppel leads a normal life.
OK, you might say normal is sort of boring.
However, the thing about Kathy's normal is that some doubted her life could ever be that. They were wrong.
Kathy is a single woman of 50 who pays the bills as a secretary. She lives in a comfortable home in Eastlake, east of Chula Vista. She's also a really nice person. May I say sweet?
I'm not stingy about such compliments, but I don't throw them around, either.
I ask to meet her two sons, the joys of her life. Alex is the oldest. He's a friendly, nice looking chap of 28 who I heard is a very good pianist. After a hand slap and fist bump (handshakes are yesterday), I ask him to play, so he starts on something that sounds pop. I request classical, so he flows beautifully into a familiar piece.
I tell him I recognize it as Beethoven but can't think of the title.
He says, without missing a beat or lifting his head, "Eighth piano sonata, ‘Pathetique,' second movement."
You could expect a skilled pianist to be up on his Beethoven, but if he has autism, you would probably raise an eyebrow.
Well, you just learned something.
Alex and his brother, James, three years younger, both have autism. They live productive, settled lives, and that's why Kathy's life is normal.
(Note to self: Before you go further, repeat after me. These two are men, not boys. Don't you forget it.)
Alex and Beethoven play on, but without sheet music. I ask Alex if he's playing from memory.
Could you read the music as well?
"I don't have to."
But could you?
He finishes the piece and says, "I could if I wanted, but I have it all in my head." Then he responds to my back pat, "Thank you very much."
Kathy says Alex looks forward to Halloween, because when decked-out children come to the door, he glances at their costume and plays an appropriate riff on the piano.
If a child is dressed as Darth Vader, for example, Alex will break into the "Star Wars" theme. The fun they have is not cheap. His mother says she spends up to $80 on candy because their door has become a required stop on kids' Halloween rounds.
During the family's frequent trips to Disneyland, Alex is often recruited by pianists in the park to play for their audiences.
Alex posts his videos on the Internet (YouTube videos pianomagnet3).
For the first few years of Alex's life, Kathy noticed odd things about his behavior. But the doctors wouldn't give her a straightforward opinion, so she pushed the idea of him not being a normal child to the back of her mind.
The questions didn't go away, though, and she started studying what autism is all about.
As for James, he seemed like a regular infant. But when he was almost 2, the signs of autism appeared in him, too. Kathy then took her sons for medical diagnosis and was told that both boys are autistic.
From that moment, her singular focus was her sons' "recovery." She read voraciously and sought expert advice. She slowly learned that recovery, as we typically understand it, was not going to happen. Instead, she devoted herself to lessening autism's effects. Her goal became making her sons high-functioning.
(Autism is a neurological affliction that strikes children. Its behavioral effects are wide-ranging, from near-normal to out of control. There is no definitively known cause, and no cure. Alex and James are high-functioning.)
Kathy says, "I made it my mission to get them as much therapy as I could, and to work with them one on one for as many hours per day as I could. I would try to encourage social interactions. I had therapists come to the house. I think all that made a huge difference."
She adds: "I feel so regretful for those families of autistic children who are not high-functioning. It's survivor's guilt, I suppose."
She also noticed there is a difference between how mothers and fathers approach such things - yes, there often is. Her husband cared, but not in the same way, not with her fierce mother's intensity.
Her single-mindedness, if I can call it that, resulted in his feeling left out of her life and out of their marriage. At this point, you know what's coming ...
The father remains active in his sons' lives, but she carries on alone in her own form of dedication.
The boys gradually learned that they are different in basic ways. They took a special-ed bus to specialized classes. And there were a hundred other things, such as a teasing boy making finger circles around his ear, or a snigger from another kid.
Alex and James noticed.
Kathy remembers: "Alex had just started using the computer quite a bit. I think it was middle school. We were in the car one day and he looked sad.
"I said, ‘What's wrong, Alex?' He told me he had looked up autism because he knew he had it. He said he read on Wikipedia that autism is a brain disorder. He said, ‘I've got something wrong with my brain, mom. My brain doesn't work like other kids' brains.' "
Though the children's cognitive powers are about the same, James is more outgoing. Kathy tells of watching a more withdrawn Alex play Little League.
"I would go to his games and watch the dugout as other kids were talking and socializing. Alex would just be sitting there and once in a while he'd say something, but he wasn't joining in. He wasn't ostracized. No, it was his choice. He just didn't have the social skills."
Kathy can still nurse a little broodiness at times, maybe treat herself to a sampling of self-pity. "I kind of grieve at work when I hear people say, ‘My son went into the Marines and he just went off to boot camp' or ‘My daughter got married' or ‘My daughter just graduated from college.'
"I always get a twinge. I wonder what life would be like if my sons were able to do those milestones. I probably cry about once a week when I think about the boys and their lives and the challenges they have.
"I cry when I think about when I'm going to pass away. I think about who is going to be watching over them. Are they going to slip through the cracks someday?
"One time I was in a thrift store in Chula Vista and I heard someone playing some of Alex's songs. I thought I'll go talk to that person and tell them how my son plays those songs. Then I saw the person. It was a homeless man playing the piano. He was dirty and his hair was greasy.
"I thought to myself, ‘Oh, my God, is that a possibility for my son?' If something happens to me, is he going to be. ..."
Some people in the autism community object to using the word "disease" to describe the neurological disorder - and to using "normal" for describing children who are not autistic. Kathy says she's indifferent to the argument, and that she sometimes has difficulty remembering the "correct" terminology.
She saves her energy for a bigger issue. "I believe something happened to their brains when they were young. With Alex, I just knew there were autistic tendencies. He had delayed speech. He would turn over his tricycle and just spin the wheel. He would watch a penguin toy for hours."
The younger son was different. "With James, I was so pleased that he was precocious - a lot of eye contact, a hundred words before he was 2. I'd say, ‘Where's your ears? Where's your nose?' And he would point to them."
Kathy says, "Right after James' vaccines, when he was about 22 months, all of his language disappeared. He stopped making eye contact. I lost him. That was very painful."
Do you buy into the vaccine-as-cause belief?
"I don't know. Can vaccines cause autism? Maybe that's just wacko because all the doctors say it's not true. I think it's a possibility, but I don't really know."
Alex and James are average-looking guys. Alex is slim, James is more robust. Both are clear-eyed and attentive. They smile a lot, but James has a more active sense of humor. They're also candid to a degree that would make many of us nervous.
For example, I ask Alex if he has romantic interests.
Do you want that?
"Do I have to?"
You have no interest in the opposite sex?
"I just don't understand them."
I ask Kathy if her sons have any behavior problems. She says, "Stubbornness is a big problem. They're unwilling to do things that will help them."
That's what my own mother said, and I didn't see it as a problem.
James says about his autism: "It's not that bad of a feeling. I've had a lot of experience having that. I don't let it affect my life. I just live as best I can."
Alex was honored by the UC San Diego Autism Center of Excellence in 2011 as an inspiration to others.
He and his brother are active in Special Olympics in several sports, especially bowling. Alex has bowled 254, and James 224.
I saw a video of James shooting around with a basketball. He has good motor skills.
Both have part-time, minimum-wage jobs. Alex is a utility player at an AMC movie theater. (That's baseball talk for versatile.) He's got his job down, like he's reciting a resume:
"What I do there is I do ushering. I clean auditoriums. I clean the hallways and the lobby. I do restroom checks. For concessions, I serve guests at the cash registers."
James works for Goodwill tagging clothes for the racks, helping at the sales counter and doing whatever else might be needed. He says, "It gives me a good feeling when you put out merchandise that people with no money can afford nice things to buy. Yeah. It makes me feel good.
"We always treat the customers with respect. They always treat us with respect. We're always remembering that the customers are always right."
Kathy would like to see Alex get paid piano gigs but doesn't know how to go about it. Personally, I'd be pleased if Alex were engaged (for pay) by schools to play for kids. It would do more to humanize disability than all the lectures they could pretend to be listening to.
Kathy looks into the future and sees ... well, it's pretty vague. She doesn't think either son will marry, but who knows?
It's more likely they will eventually move into their own apartments. A public agency, the San Diego Regional Center, offers support for independent living for the disabled.
As a step toward independence, Alex drives, and James is considering doing the same.
Both young men receive Supplemental Security Income from the Social Security Administration and have Medi-Cal health insurance.
Kathy Koeppel presides over a happy, normal - there's that word again - household. Well, maybe a bit abnormal, too.
"Abnormal" in the sense that their home functions quietly. The only outburst might be when the Padres blow another one.
Theirs is not the common family emotional grab-bag of loves lost and (sometimes worse) loves found. Or the acting out of grade stress, or the bratty middle-school years. And you'll likely never hear, "No, your deadbeat buddy can't sleep on our couch" or "What's that smell in your bedroom?"
Kathy wouldn't say that autism is a blessing. It's a disorder-disease-whatever that has robbed her sons of certain joys and sorrows of education, career and family.
But Alex and James will laugh heartily at an "Alvin and the Chipmunks" movie and root for the Detroit Red Wings without knowing what a shambles that city has become. They will earn every penny of their minimum wage. And they will be nice to people. Repeat, they will be nice to people.
No, autism is not a blessing to Kathy. But her two sons are.
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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