The Parent Trap: I am the Mother You Shun in Wal-Mart

By Kristina Lakes

I am the mother you shun in Wal-Mart. Your disapproving eyes flit from my unbrushed hair to focus upon my four-year-old son, who is dressed in a long-sleeved, fatigue shirt and tight, black-wool leggings, even though it’s August. He’s also wearing a cowboy holster and sheriff’s badge. Any minute now, he’ll begin yelling and shrieking about the toy he wants to buy. You wonder what is wrong with him. You wonder what is wrong with me. I feel your scolding, scalding stares, and I wish I could assure you that we’d be out of your comfortable way soon. But I have no idea how long this horrible, harried trip to Wal-Mart will last.  All I know is that this will be our only outing of the week, and it was only out of sheer desperation that I brought him here. We are out of milk, and if my son does not have milk tonight in his special cup, he will have a horrible, hour-long rage. He will hit me, crawl under the table, scream, and throw things. His little sister will cry in fear. The dogs will cower behind the sofa. I will pour myself a big glass of Chardonnay. When the rage is finally over, which can last anywhere from fifteen minutes to three hours, I will cuddle him, massage his shoulders, put him to bed, say “I love you,” and go out to the living room and cry and drink some more.

My son has Asperger’s Syndrome. Most people have now heard of it because Mark Zukerberg is rumored to have it. I wonder though. I see little resemblance between the billionaire genius and my four-year-old son. I wonder if the Facebook founder had daily, explosive, irrational rages when he was four too. I wonder if his mother drank.

I knew we had a problem when my son was 18-months-old. My family told me that he was just “pressing my buttons” when he began having screaming fits when he didn’t get his way. They said I was spoiling him. But they couldn’t explain why he had extreme reactions to large crowds and loud noises. One time when we were in a public bathroom, the automatic toilet flushed, and my son threw himself against the door and beat on it, trying to get away. The lady in the next stall came out and glared at me. I know she thought I was beating him. Another time in Church, the organist started playing, and my son dived under the pew in front of him. The man beside us moved over, far over.

I thought my little boy was just sensitive, until at age three, he started having bathroom issues too. He would “hold it” until his little tummy was bloated, and one time, he didn’t “go” for four days.

I took him to the pediatrician. I had to tell elaborate lies about where we were going, because by that time, doctors scared him. When he got his shots for preschool, he cried and screamed for a half hour straight. I practically have to plan a covert, military operation to get him there this time. Once we pulled into the parking lot, I had to bribe him with money – and a lot of it – my boy is smart — just to get him out of the car. “I want paper money. No metal,” he says.

I explain the bathroom problem to the doctor. The pediatrician tells me I should make my son sit on the toilet after each meal for approximately ten minutes. I pay my $50 co-pay and walk out the door. That night, I find out that ten minutes is a long time when you’re yelling through the door, “Sit there, damn it! Sit there!” When he finally does go, the toilet is smeared with feces. I assure my husband that it was just a mistake; our son is not smearing feces, he is not destined to become an axe murderer. I believe this. No, I hope this. I desperately want it to be true.

For a few weeks, things seemed to be getting better, but then my son began to pull out his eyelashes. Then he picked at a mosquito bite until it bled. Once he sucked on his arm until a red bruise appeared, ironically shaped liked a little smile. He became more difficult for me to handle too. When I ran out of his children’s toothpaste and put regular, adult toothpaste on his brush, he screamed for an hour afterward. He said it was hot and burned his tongue. He accused me of trying to kill him.

Our pediatrician finally recommended a psychiatrist. “He is displaying some signs of Asperger’s Syndrome,” he says quietly. “I’d like to refer you to this new doctor who specializes in child psychiatry.” For once, my child is not crying when we leave. I am. I Google the terms when I get home, and cry some more. I can’t believe my son has autism. There must be some mistake. My son is smart, verbal, and creative. Like so many other people, I have no idea what the “autism spectrum” really is, and it makes no sense to me that my intelligent, funny, beautiful little boy has anything in common with non-verbal, special needs children. My husband is as shocked as I am. We talk endlessly about it, and finally decide to get a second opinion.

This time, we take our child to a children’s hospital. They give us literally 40 pages of forms to fill out, and ask the preschool to fill out inventories too. Four months later, when all the pieces of paper are compiled, they diagnose him with Asperger’s Syndrome, Attention Deficit Disorder, and Oppositional Behavior Disorder. My husband and I stare at each other in disbelief. It’s true. My husband starts to ask questions, but there are few answers. The Nice Doctors give us booklets, the names of parent-support groups, and refer us to another doctor, whose office is two hours away, because there are no child psychiatrists in our town who are taking new patients.

I’ll be honest. I didn’t do much of anything right away. I couldn’t. When my family asked what the doctors had said, I wrote an e-mail to them: “This is hard to write. He has been diagnosed with autism. It’s on the high end of the spectrum, called Asperger’s Syndrome. (I am ashamed of this disclaimer, but still, I write it.) I know one day we will be the Poster Parents and do fund-raising and have benefits to raise awareness. But for right now, we are shocked and panicked and grief-stricken.”

No one writes back. Perhaps they are just giving us a little space, I think.

Finally, grief abates a little, and I begin to get back to the work of helping my boy. When I try to make an appointment with the child psychiatrist, he says, “I have a specialized practice, and I don’t take insurance. It’s $300 for the first evaluation. which should last an hour and a half and $150 for each session after that. I don’t do counseling; I just manage medicines. Now what was your son’s diagnosis again?”

My son is sitting beside me. I’ve never said it in front of my son. “Asperger’s Syndrome,” I whisper. I’m not even sure I’ve pronounced it right.

“The first appointment I have is in three months,” New Doctor says. My son didn’t hear a word. He is looking at Halloween costumes in a magazine. Halloween, or any holiday, ever, seems very far away to me.

And so, three months later, during which time my son has had daily rages, including two where he threatened to kill me, we visit New Doctor. His office is resplendent with a water fountain in the foyer, deep burgundy couches in the waiting room, and what looks to be a real Tiffany lamp in his office.

“I still can’t believe my son has autism,” I say to New Doctor, hoping he will tell me it’s all been a mistake.

“This will be a problem until you accept it,” New Doctor tells me, somewhat harshly. “We will put him on this anti-psychotic medicine, try a social skills class, and enroll him in an occupational therapy program. This can work, over time. ”

I tune out. The word “time” gets me. I am already stretched to my limit. I work 40 hours a week. I take my children to the pediatrician, dentist, eye doctor, and reading specialist; they both are in swimming lessons, and my husband is gone a lot because he works for the military. But sure, let’s add more classes.

I tune back in to what the doctor is saying. He tells me that I’m doing a good job. I don’t believe him; it just sounds patronizing. He also tells me that there might worse to come, especially when my son enters the teenage years. He rattles off a long list of problems he will likely encounter – ordinary things like peer pressure, alcohol and drug abuse, hormones –all exacerbated by his special needs. It’s a glimpse into the future as my son’s mother, and to tell you the truth, I’m not sure I like what I see. In fact, I hate what I see. Where will I get the guts, help, information, help, respite, help, time, help, steadfastness, help, money, help, love, help, energy, help, I need for him in the coming years?

About two months later, as the medicines kick in, the New Doctor turns out to be right.  My son does indeed get better. The rages have stopped, for the most part, except when we go to crowded, noisy places, like a restaurant, like a school concert, like Wal-Mart. I have cut my hours at work so I can take him to his therapies. I have learned to prevent a lot of problems for him by creating routines and eliminating a lot of extra things from our lives. It is hard. Very hard. Life seems … spare. But still, I see improvement, and I cling to it. My son seems more content, more balanced, and more, and I hate to use this word, but…normal.

Me? I’m not sure I fared as well. I’m not normal anymore. I am tired. And to be honest, I blame myself, I blame my husband, I blame Old Doctor, New Doctor, and Nice Doctor. And on a lot of days, I blame my son. I know I’m not supposed to, but I do. I’m working with another psychiatrist, this time for me, trying to get past all that blame and anger.

Until I do, I’m just another mother in Wal-Mart, walking fast, trying to avoid your eyes.