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


Salon.com
Comments
Achingly beautiful in your honesty. Painfully heart-wrenching in all that is on your plate.
I just hope that I would never be one whose eyes you would need to avoid. God, I hope not. My love, Kristina ... my love and my heartfelt best wishes for strength and peace.
Your feelings, the good the bad the ugly, are all natural and those two will change, be different, the same.
Stare back at those who look because we are different. Who the hell appointed them regulators of life anyway? Stare back. Watch them cower away.
I don't know if it's so, but I was told at an early age (as was my Mother) that I was Hyperactive (which, in the early 60's included ADD ADHD and higher forms of autism) and they recommended lithium to 'calm me down.'
My mother said, "No." I am so glad she chose that answer. I might be somewhere between Asperger's and "normal" (whatever *that* is.) It may be the difference of only a few neural paths in me, versus your son.
Your road is hard, to be sure. You are not alone, though. Make use of the sources available to you -- as many as you can find. It's not your fault, it's not your husband's fault and it's definitely not your son's fault. Hang in there and keep writing.
rated and strong high regards (moved me almost to tears)
Get ready for IEP's in school. Those meetings are what I consider horrible because you seldom hear the good.
Remember the good. Keep those moments and gains close to you.
You tell your story so well with courage and determination to see your son through life as best as you both are able.
I'm glad you have somewhere to write about it and find support.
I was glad to read that your kids swim. Does your son love to swim? That really helped with mine. His nervous system was most calm when he was surrounded by water, and his energy had an 'unbreakable' environment...
Mine was also helped in public by my giving him a list of items to look for in the store, that would kick his 'hyper-focus' in.
I also quit feeding my son any dairy. Maybe there are some food triggers your son could do without?
Our kids' snacks became air-popped white popcorn, organic for no chemicals that would start him up, with some butter, salt, and crucially, Nutritional Yeast sprinkled on, all in layers (3), toss the popcorn each layer. The B vitamins in the Nut. Yeast calmed the heck out of all my kids, esp. Hyper Boy, and it's such a loved treat for them...and cheap.
I know, sounds weird, but tastes great. : )
Best wishes to you, Kristina...
Let me be brutally honest back.
You ARE doing a great job, and regardless of all the negative reactions of people around you who have no idea,...you are loving your son with all you have.
You need to cut yourself some slack, and realize that you are doing the absolute best you can with what time and energy and moeny you have.
How can you do better than that? How can ANYWAY say otherwise?
Keep writing here. Your writing is wonderful.
Much love to you.
Kate
I know all children are different, and all end results are different, so I don't know where your son will go. But I do want to give you some hope. If somebody had told us that at 23 our daughter would be a charming, responsible adult who had friends, successfully attended college and who has a job where her employers love her, I don't think I would have believed it. Sure, she still has her quirks, but she is successful and on her way to a good life.
Keep giving those hugs. The best thing I think we did for our daughter was to let her know that she was a good person and very loved.
lschmoopie's last sentence was on the money. I'm not around kids much but if I meet someone with a child with Asperger's, your post will stick in my mind and I'll have a better understanding. I hope your son keeps improving, I wish you peace and some help. Thank you.
I might wrongly think you are one of those parents who will also selfishly take their screaming monsters to places where adults go to enjoy a pleasant evening. I am a lot more understanding toward mothers with children in stores of all kinds though than I am about the ones who show up with infants or toddlers just in time to ruin my quiet anniversary dinner in my favorite restaurant. But you don't do that. I know you don't.
And staring at mixed race kids? Maybe because they are so beautiful.
Love for eternity...
The numbers of well known and (extremely) successful folks with Aspergers is surprising, so whatever you do Kristina hang in and hang on :). From my observations part of the problem is intelligence - these folks are usually VERY intelligent - like right at genius intelligent. The pace of life in general - and too many of the people in their environment - makes for a rather frustrating experience for them, everyone and thing else is too sloooowww... they're already there and past it and onto the next thing before us average folk even get a glimmer of it :-/.
Just keep on doing what you're doing and know you're not alone even though it too often feels like you are.
Rated for doing what must be done.
In my family's case, yes it did. But, it took time and perspective to see the world through ASD colored glasses.
Reach out to a ASD family support group - it's been a lifeline for us.
My experience is with PWS
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002572/
which isn't officially on the spectrum but my sister has more autistic symptoms than most. I would reiterate so strongly - routine routine routine routine routine routine and then a little more routine. The hardest part of that, of course, is for you - no running out of milk or toothpaste, etc. And a parents' support group. Better than a shrink I would think.
http://www.parentingaspergerscommunity.com/public/503.cfm
Embrace these challenges! Embrace the chaos, the pain, the fear, the feelings of rejection, the loneliness, the uncertainty, the overwhelming-ness of it all. If you dwell too much on how hard it all is (and we both know the obstacles can seem insurmountable), you'll miss the little sparks of joy, the glimpses of hope and promises of your son's potential.
Sure, our children with mental illnesses may not have the same future waiting for them that awaits neurotypical children, but they still have a future. And how much greater will our joy be if we can go with them from "How will I ever get through the next hour with this impossible child?!" to "Will you be coming home for Thanksgiving this year, son?"
There are days when I don't think I'm cut out for my job as mom to six kids, four of whom have mental diagnoses, days when I'd give anything to just run away for a while - or forever. But when I look back, I realize our greatest joys have come when we managed to spend some time like a "normal" family. And I realize that it is in those fleeting moments, which most people would take for granted, that I feel God's love the strongest.
Hang in there. You are brave and strong and beautiful. You are a good mom. God WILL reward you when you persevere. But maybe, just maybe, He's already given you a gift worth rejoicing over.
It can be especially hard for "normal" siblings. I didn't realize for a long time the impact my child's issues had on our other child. If it is not aleady happening, I strongly recommend counseling or some kind of play therapy for your other child. They need help coping too and don't have the emotional resources of an adult.
Yes, I know, one more thing to worry about. Best wishes to you and your family.