Ring the bells that still can ring,
Forget your perfect offering.
There’s a crack in everything. . .
That’s how the light gets in.
A Child First
The earlier the diagnosis, the better. If you’re the parent of a child with autism, you have probably heard that phrase at least once since receiving your child’s diagnosis. And it’s certainly true. I’m grateful that my daughter, Lauren, was diagnosed as young as nineteen months old. However, believe it or not, there’s a slight negative side to receiving a diagnosis, and a label, so early.
At nineteen months old, Lauren was a beautiful, very quiet, perfectly behaved toddler. (So we were overly blessed with friends and relatives who dismissed our months of searching for answers and said things like, “Oh, she’ll talk soon enough. Stop looking for trouble where there is none.”) Upon receiving the diagnosis, however, my husband and I suddenly had a difficult time focusing in on Lauren’s beauty and peacefulness. We now looked at her and saw a set of symptoms. Whereas we used to think that her steady back-and-forth step to some music from a children’s video was adorable, we now saw her dancing and thought, “Oh, no . . . see, she is autistic,” even though her older sister, Bryn, has swayed to music since infancy.
When Lauren was about fourteen months old, I was sitting in the middle of a crowded pew in our church with Bryn and Lauren, who was on my lap facing outward. My husband was sitting in the front pew with a group of people for a special part of the service. A quiet and solemn moment had just begun . . . and so did a fit of laughter on my lap. My husband was the only person in front of me who didn’t turn around, because he knew exactly from where the laughter was coming. I knew he was smiling, and despite my wasted efforts to hush my baby, so was I. The people around me must have thought someone was quite inappropriately encouraging or tickling the child, so I was a little embarrassed. But Craig and I were mostly delighting in this beautiful laughter, because this was one of only very few times we had heard it, or Lauren’s voice.
A few months later, a pediatric neurologist asked me if my daughter ever laughed uncontrollably for long periods of time. In that second, this cherished sound became a symptom instead of a joy.
When Lauren was twenty-six months old, she threw a tantrum (for a very appropriate reason our detective/parent selves later realized.) With my older daughter, I had always handled such situations as natural occurrences and never became overly upset by them. But this one made me very upset. This seemed to be a new aspect of Lauren’s autism that took me off guard. I wondered if I would be able to handle what the future would bring. We went to the pediatric neurologist for a regular visit, and we told him. “That’s great!” he said. “Do you realize she’s acting like any normal two-year-old? And what did she do when she used to be upset? She shut down. Now she’s choosing to act outwardly—to communicate to you that she’s ticked off! That is so wonderful!” I see my friends’ two-year-olds throwing tantrums all the time and tell them not to worry about it; it’s often part of being two. But it took a pediatric neurologist to tell me to allow my child to be two.
A few months ago, I heard Lauren making some musical sounds as she was walking around the house, and I told a visiting friend about auditory stim and methods I had read about to cut it down. I remembered this incident yesterday when I heard my older daughter singing to herself. The song she was singing was not only recognizable, but in tune. I know this wasn’t the case when she was two, yet she sang all the time back then. Had I ever called her singing auditory stim?
When Lauren was first diagnosed, Craig and I had her in a program for children with autism for a very short time. She was always happy and willing to be near others when in a comfortable situation, whether a new or an old one. But at this school, she continuously cried and curled up into an inconsolable, unreachable little girl. Even favorite toys from home did not affect her. (This was before I became knowledgeable about her many extreme sensory needs which probably made the environment somehow painful to her.) After about eight days of attendance, a teacher met with me and said that because Lauren was not settling in as quickly as expected, they were working on methods to bring her around. The head teacher had observed that Lauren seemed like a different child when she was in my arms—she was very affectionate and happy with me. They wanted to utilize this pleasant association with Mommy. The teacher asked if I wore any perfume or shampoo that had a scent she would associate with Mommy. They wanted to scent a blanket or scarf with a Mommy smell then reward her with it when she did something positive. For example, if she made a move in the direction of the other children instead of away from them, she would be awarded with the Mommy item. “Then what would happen?” I asked. She said they would give her a minute with the item, then take it away until she did the positive behavior again.
I would never put my older daughter in a daycare that utilized a method I would call “Mommy’s love is conditional” so why would I accept it for Lauren? Craig and I decided before the next school day that our twenty-month-old was first our baby who needed Mommy full-time, and, maybe second, a little girl with autism. She never attended the school again and we have never regretted our decision.
In an attempt to be as considerate as possible with my words, I use the phrase “child with autism” instead of “autistic child” as often as possible. It makes the child more prominent in a sentence than his or her set of symptoms. But being considerate with my words doesn’t mean much if belief and action aren’t behind it. I’m a good parent who believes both of my children are whole, spectacular persons. Yet in practice, I catch myself viewing them through the array of labels the world places on them, as well as my personal feelings about these labels. I’m trying not to do so, in every small way each day.
Our daughters get baths every evening. Some evenings, it’s not very convenient, such as when we’re out very late and they are almost asleep when we get home. In such a case, Bryn will sometimes forego a bath until the next morning. When Craig suggests that Lauren is too tired for one, too, I insist that we remain in routine, because I know that routine is very important to most people with autism. Craig sighs as we force a very tired and unhappy toddler into the tub. In honor of recognizing her as a child first, I think I might let Lauren go to bed dirty the next time we stay out late. Bryn has survived it numerous times, maybe Lauren would, too.
Decorating with Autism
When I was growing up, my parents decorated their house in the Early American style. When I married, my parents and in-laws generously handed down some older pieces of furniture, allowing my husband and me our own style, which we endearingly called Early Attic. Sometime during the last three years, however, we’ve renamed our decorating style to reflect its strongest influence. We now decorate in Early Autism.
For those unfamiliar with the Early Autism style, the name doesn’t reflect choices of furniture and accessories as much as their placement. (Though this style probably does preclude glass-topped tables and any elaborate display of interesting knick-knacks.) It’s not a style purposely chosen. Rather, it’s one gradually grown into, usually unwittingly.
For us, the transition likely began the day we sent our end tables to the attic. Our two-year-old daughter with autism loved to sit on these tables. At first, this was no great concern as they were sturdy hard-rock maple still virtually smooth and shiny after over twenty years of abuse from uncoastered drinks, as well as children. But when our little girl’s seating choice became an issue of contention at the houses of friends (who put silly things on their end tables like lamps and crystal dishes) we decided we had to address our child’s preference as inappropriate behavior.
After many days of frustration and anger, I remember throwing myself on the sofa in surrender, when I saw it. As I looked at my daughter sitting on an end table, I finally saw that end table as she did—and it looked like a chair! It was a large platform on four legs with a smaller raised platform at the back. It was placed in a room full of chairs no less, and it was more her size than any of the others. (At that moment, I cheered up instantly, told my little one how very smart she was, then phoned my husband to tell him the end tables were leaving that evening.)
Actually, I now remember that it was the day the ceramic lamps went to the attic that our decorating transition began. The lamps once sat on those end tables, but they were in the way when the tables were used as chairs. (Thank God for overhead lighting.)
One day, I was wasting time mourning my limitations in decorating when a silly “what if” thought turned my mood around. I imagined that I had won a free home makeover by some famed decorator. This person, whom I’ll name Martha Stewart, for lack of a better name, would come into my home with the intention of helping me make my world more comfortable, stylish and attractive.
My tour with Martha begins in the living room, where she immediately comments on the placement of the sofa in the middle of the room. “How about pushing it up against the picture window? It would really open up the space.” I tell her that’s not possible because it gives my daughter a stepping stool to the window sill, and there’s nothing she would rather do than stand in the window all day.
“OK,” says Martha, “Then how about against this great big wall here?” I tell her that’s also not a good idea, as the wall makes as great a seat back as the sofa, and we could forget about hanging pictures within reach of little hands. (I haven’t decided whether I would tell Martha I have a child with autism. She’s so gracious, it may be more fun to let her quietly believe I’m just a parent with a severe discipline problem.)
Martha sighs and moves into the hallway and stops. “May I ask why there are bolt locks on the outsides of all these doors,” she nervously asks.
“Well, behind door number one is my bedroom,” I offer, “which also houses the cats’ litter box ever since someone discovered it made a terrific sandbox, too. Behind door number two is the bathroom, which includes a toilet, of course. When the No Swimming sign failed to deter one family member, this lock was installed. Behind door number three is simply a storage closet where I keep laundry hampers. Trust me, if this door were unlocked there would be dirty clothes all over the house and a laundry hamper teetering on the edge of the dining room table with a gleeful little girl inside of it.”
Martha slowly nods and doesn’t ask me to unlock the doors. We move into the dining room. “That’s an interesting flat plate light fixture on the ceiling,” she says. “but I would recommend a simple chandelier to add a little warmth.”
“Oh, there was a chandelier here when we moved in and it did look nice over the table,” I agree. “But that particular chandelier didn’t hold up very well to being spun. The day it dropped two feet from the ceiling was memorably frightening for us all. I don’t think we’ll have another one any time soon.”
Martha looks at the ceiling as though it’s possessed, shakes, resumes her composure then notices the antique dresser against the wall. “What a lovely piece,” she comments. “The runner and basket dress it up nicely, but it’s a little barren.”
“How about this?” I offer, as I open a drawer and pull out a pair of candles in decorative holders and place them on each side of the basket.
“Perfect!” Martha smiles. Then my children run in, one little girl being chased by another. The smaller one suddenly stops at the dresser, takes a candle by its holder in each hand and continues on her way.
“She collects pairs,” I tell an amazed Martha.
We move through the house in a similar fashion and finally end up in the kitchen. “I noticed that the microwave is in the dining room,” Martha observes. “This space next to the refrigerator seems to be just right for that.”
“Yes, it is,” I reply. “But do you see that ceiling fan? My daughter can scale the microwave cart and refrigerator in an instant in order to spin that fan. So we leave that space empty for safety’s sake.”
Martha nods her head in instant acceptance. Though we haven’t made any decor changes, Martha smiles and says, “I believe I’m finished here.” To my look of confusion, she adds, “You decorate in a unique style that’s comforting and considerate of people’s needs. I especially liked the bouncing motif, which I’ve never seen before, created by the spring horses and trampolines throughout. I also marvel at the use of comforters, pillows and stuffed animals to create cozy nooks in corners. I wouldn’t change a thing!”
In my state, there is an organization called Parent To Parent for which I am a referral parent. Parents or family members of a person with a disability may call in to request information about various disabilities and available local services. They may also ask to be connected with another parent of a child with the same disability. The majority of calls are from parents of young children with new diagnoses. Parent To Parent keeps its records of referral parents up-to-date so they may match, as closely as possible, the inquiring parent to a family who has experience in the area in which they’re interested. For example, I’ve received a few calls from parents who are interested in homeschooling their child with autism because I’m listed as a homeschooling mother in the organization’s files.
I met my first mom of a child with autism through Parent To Parent. I received a call from Teri a few days after my call for help to Parent To Parent. There happened to be an autism support group meeting that evening and Teri called me to ask if I would like to come. I met her at a convenient location, where she also picked up another mom of a son with a recent diagnosis. Teri drove us the rest of the way to a church building where we encountered a whole new world of people and information. After the meeting, we three women (and one other mom) stood in the parking lot outside the church, laughing, telling stories and sharing ideas until after midnight. Teri felt like a dear friend by the time I got back into my car to drive home. She’s been a source of information, empathy and laughter, ever since.
Teri is the ultimate parent to help parents with a new diagnosis. Her daughter is nine years older than Lauren, and has always been less developmentally delayed than Lauren. Teri was working on getting her daughter into a regular public school classroom back when autism wasn’t a recognized diagnosis in our state’s special education program. Despite the differences in our children and our autism experience, the moment I started speaking to her on the phone, Teri obviously understood everything I was rambling on to her about my daughter, my feelings and my, as yet uneducated, “mom’s intuition.” She understood that I saw in my baby girl what no doctor had seemed to see behind their official declarations and recommendations. She encouraged me to follow my gut instincts and to become the expert on my child.
Teri has been in and out of many organizations, school situations and political advocacy groups over the years, but has never stopped taking calls from parents of young children with a new diagnosis. A few months ago, I was complaining to her that I sometimes dread calling the person whose name and phone number I have just received from Parent To Parent. (I worry that my being in a very different place from these people will prevent me from making a connection. This leads me to wonder if someone closer to their situation might be a better contact.) Teri reminded me of how we first met and reassured me that whatever I had to say was beneficial.
Probably one reason I don’t like to talk to new parents is my consternation at the advanced knowledge they seem to have for newcomers. When a mom tells me her child speaks about twenty words and is already on a gluten-free diet, I realize that it’s only moments before she realizes I’m not much of a mentor. I eventually have to respond that my daughter still has no consistently usable language and that our family also just began the gluten-free diet. When she starts to advise me on the best places to find gluten-free products, I consider hanging up on the little whipper snapper! I’ve never hung up, though (as it takes me a minute to find a pencil to jot down the name of the store she recommends) and after about another thirty minutes, I’m glad I didn’t.
Information is much more readily available for parents of autistic children than it was just eight years ago, when Lauren was diagnosed. (I must brag that, locally, we had some remarkable conferences and speakers come to town while I was on the board of directors of our Autism Society of America chapter.) In the early years after Lauren’s diagnosis, I received many articles about autism from friends and family who wanted to help. Most were biographies of families dealing with autism, and the point of the article was usually to portray, as realistically as possible, the family’s legitimate sense of hopelessness. (I don’t know if I ever officially stopped saying “Thank you” when handed one of these, or if it just naturally turned into, “Yep, read it already!”) There were two or three prevailing educational theories at the time, each having its own miracle poster child, but there was no evidence that any of these successes could be duplicated in a child with a firm autism diagnosis.
Within the last few years, the amount of television reporting on autism, celebrity attention to autism and magazine coverage of autism has exploded. This is primarily because of recent discoveries of successful and duplicable dietary and physiological interventions, such as gluten- and casein-free diets and secretin. Today, newcomers to autism may be encouraged by health professionals to find hope in widely available documented statistics. Less than a decade ago, hope was more likely to be discouraged by professionals, but held privately by parents despite statistics.
Though hope supported by statistics is great to have after being so long without it, it’s not what parent-to-parent support is all about. When I get past the initial information exchange (which tends to be all my new parent friends are looking for at the start of a phone call) the important stuff begins. That’s when I get to be more to this person than another multi-media information source—as attractive and interactive as I am in that role. That’s when it hits—the reality of finding and speaking to another human being on this earth who understands the grief of mothering a beloved child in the harshest of conditions. This person understands the pain, the anger, the spiritual challenge, the physical challenge, the grief over everything that is lost. She also understands the spurts of wisdom and intense joy that are unexpected blessings in the unlikeliest of places when you love a child with autism. Friends and relatives often don’t grasp that last one. That’s something only parents of a child with autism (or another extreme diagnosis) can confidently nod about.
Conversation with a new mom friend often takes a delightful turn when she tells me where her child is developmentally. (I talk about moms instead of parents because I’ve only provided support phone calls to women so far.) Compared to Lauren’s capabilities at her child’s age, or even now, her child usually sounds very capable, so I say, “That’s great!” It’s not empty encouragement. I’ve taught enough, met enough and read enough about children with autism that I know the potentialities of a child who is talking in short, complete sentences at three years old, or who is toilet-trained and eats a healthy diet of fruits and vegetables at four. These are important indicators of the depth of his problems.
Prior to our conversation, the mom has usually encountered only medical doctors who have presented a discouraging picture of her child’s future. Medical doctors speak in terms of deficiencies. A medical diagnosis is an assessment of what’s wrong with a person, not what’s right. When this mom describes her child as a list of symptoms and I say, “That’s great!” this may be the first time anyone has been positive about her son or daughter since the diagnosis. My positive reaction usually leads to my new friend bravely sharing some other positive things she’s noticed or long held dear about her child, and our relationship is off and running. (After this conversation, we may never speak to each other again, as she’ll find people who are closer sources of strength, but our short-lived relationship will have served an important purpose.)
Parents with a new diagnosis, or even an old diagnosis, often step back from their children so they can see them as the professionals do, assessing their needs, developing strategies, choosing programs, then trying to make those programs work. Professionals, friends and relatives often expect them to perform these tasks without a thought about the emotional strain, not because they’re insensitive, but because it’s necessary. It’s Mom and Dad who know the child best and want the best for them, so they make the best advocates. So what a joy, on occasion, to inquire about a mom or dad’s thoughts and feelings and to honor their heart and their instincts by affirming them. Some people can do this only by listening, and by trusting that what this parent shares is true, never questioning it. Another mom or dad who’s been there can actually say “Amen to that!” and raise them one by sharing a similar story or observation. The opportunity I have to do this for so many people is a gift, particularly as they usually return the favor within the same conversation.
I was once trying to convey to a mom with a new diagnosis that her son was the same sweet little guy that he was the day before he received the label of PDD/Autism. She told me that the doctor had said that this was a lifelong condition and that it would change their lives drastically. He suggested that her boy had no future and blatantly declared this diagnosis to be the worst possible in the field of pediatric neurology. (Guess whether I advised her to keep his services.) I explained to her that this man was a medical doctor, that his job requires him to look at the deficits to provide a diagnosis, but in this case, his diagnosis was wrong. (I was even shocked with myself when I said this, but I knew where I was going, and I had a few years of experience with a child with many more challenges than her son, so I was confident.)
“Autism is a medical condition with physical symptoms, right?” I continued quickly.
“Right . . . “ the woman hesitantly followed.
“Think of another medical condition for which you would go to a doctor with a group of symptoms, for example, a headache.”
“O.K.” she agreed.
“What is the worst kind of headache you can imagine? There are tension headaches. There are migraines . . .”
“Oh, they’re terrible,” she said.
“Yes, but have you ever known someone who went to the doctor because of a severe headache and it turned out to be a brain tumor?” I asked.
“Uh, no . . .”
“Well, I have,” I said. “Some of the symptoms are the same as with a migraine. Severe headache, nausea, sometimes dizziness and loss of vision. A migraine is not fatal, but a brain tumor is often fatal or terribly detrimental to the person’s future.” I took a breath and asked, “If your son had this cluster of symptoms, which diagnosis would you hope he had, a migraine or a tumor?”
“A migraine, of course!”
I spoke quickly as I was afraid she’d hang up on me at the ridiculousness and insensitivity of the question, “Well, your son was misdiagnosed. He has a migraine, not a brain tumor.” Silence. “I get migraines,” I explained. “They’re horrible. My doctor treats them very seriously, they greatly impact the quality of my life and I often need my family’s help to get past a bad episode. There are a lot of things doctors have learned recently that help many people with migraines. Physiologically, there are medications from Tylenol to prescription drugs that might help. Diet changes and nutritional supplements can also make a huge difference.” (I was beginning to see the huge correlation between migraines and autism.) “When I feel a migraine coming on, I help myself by modifying the environment. I lie down on a soft surface in a quiet and dark room. Long term, I try to keep my schedule and my surroundings as simplified and uncluttered as possible since I know chaos contributes to my stress and migraines always follow a period of stress.”
My new friend was still quiet, so I hoped for the best and finished my analogy. “Autism is really, really bad, but it’s not the worst diagnosis you could get. It will sometimes make your life miserable, but there are physiological interventions, nutritional interventions, educational interventions and environmental accommodations you can make . . .”
“It sounds a lot like a migraine.”
“Only worse,” I admitted.
“But not a brain tumor,” she said.
“Not a brain tumor.”
“Thank you so much,” she said. “I can’t wait to tell that to my husband.” Hooray! I hadn’t completely blundered as a support person.
“Oh, and in between really bad episodes,” I added, “you have your family and you can love them to pieces.”
“That doctor was a real idiot,” she said.
“Yep,” I agreed. After a few more “thank-you’s” and “nice-to-talk-to-you’s,” we hung up and I wandered around my kitchen trying to remember what I was doing before my phone rang, knowing in the back of my brain that I should quickly search for Lauren. But I always walk in circles for a few minutes after a conversation like that, to allow it time to settle into my brain so I’m sure not to lose it, I guess. When I was finally ready to push open some doors and look for Lauren, I felt the smile on my face as I actually said aloud, “I’m so glad I get migraines.”
“I’m sick, Mom”
In the late summer twilight, your delicate profile is gently illuminated by the glow of the picture window. As you gaze at the television, your reliable bedtime video comforts you for the moment. Wisps of hair, only wet at the tips now, an hour after your bath, bend in front of your ear and fan out toward your face, directing attention to your delicate gray-green eyes, barely colorful under the glow of the room’s dimmed light. The slope of your nose is a gentle line rounding out at a perfect distance to form the tip of your nose. So rarely do I have the opportunity to just look at you from this angle. Your pale lips are full and soft in this serene instant. If I possessed the perspective of this moment only, I might envy the physical gifts God has bestowed on you.
My perspective changes as you draw your lips back tightly and squeeze your eyes shut. A moan ever so slowly makes its way from deep within you, turning slowly into the high-pitched sob that fills my ears and my heart. You draw your hands to your eyes and press two fingers to each lid. The warmth of tears on your cheeks seems to alarm you, as it always does, they come so rarely. In between batting and rubbing them with your fingers, your eyes grow wide as you try to stop the flow. You turn to me in confusion about the whole matter, slowly letting out a deeply drawn breath that turns into another wail, then another, then another.
Thankfully, we have a double-wide upholstered chair. You normally don’t let me sit next to you for long, but tonight, I rub your leg in rhythm with my attempts at reassurance. I catch myself lying every now and then, saying, “It’s OK.” Or “You’re OK.” Then I realize that I have no idea whether you’re OK. In fact, you have been sobbing most of the last hour, so you’re probably not OK. “You’ll feel better, Lauren.” I change my mantra. “I promise this yucky feeling will go away, and hopefully, it will go away soon. Let’s pray to make it go away.” And I speak a prayer aloud, directly to Jesus, from both of us.
I have no idea what yucky feeling I’m talking about. You’ve been sick with a head cold for over a week, but it seemed to be going away. I presume you had a fever, headache and horrible sore throat with it, as those were my symptoms when I came down with it the same day. Today, I have gobs of congestion in my throat, often making it impossible to swallow. I just attempted to vacuum the car, but I’ve been dizzy on and off, and bending over to reach the floor mats gave me a sudden headache and wave of nausea. A friend at church this evening told me there was a second wave to the virus I thought we were over. I believe her. Is this what you feel Lauren? Do you have a headache? Are you nauseated? Does your stomach hurt? Can you breathe through your nose and swallow? I know I’ll never know the answers to these questions. Not about tonight’s illness anyway.
I pray that one day you’ll be able to tell me when you hurt. I long to hear, “Mom-m-m-y! I don’t feel good!” When I hear Bryn whine these words, I’m not happy to hear them, but I know what to do. I stop what I’m doing. I ask what hurts. I put my hand to her cheek and forehead. I take her complaints seriously and rearrange my schedule. I hug a lot and rub her back. I wrack my brain trying to remember which home remedies and over-the-counter drugs address each symptom best. I would do that for you, too, my Lauren. But instead, too many times I’ve grown angry at your whining, put you in your room or yelled at you from the front seat of the car, only to have you suddenly throw up. “Ah ha! You’re sick!” I thrill at the solving of the mystery, and in the same instant, repent of most of my actions during the last twenty-four hours. If only I’d known, Lauren, I surely would have been more compassionate.
When you’re sick, Lauren (which is often the case, thanks to that compromised immune system that came along with the diagnosis), you don’t understand why we’re putting a bucket in front of you or forcing you to face the toilet. In fact, you’ve never put up with that smelly nonsense. Why, after all, would any sane person think that looking directly into a mop bucket or commode would make one feel better? If anything, it would make a relatively healthy person take a turn for the worse! Yes, I fully understand your line of reasoning on that one. (But I don’t understand how your worst illnesses have been so consistently scheduled with each delivery of new furniture.)
I’ve read about migraines being a problem for many people with autism, particularly if they have a family history of migraines. I’ve had migraines that have forced me to lie down on the ground and made me unable to see. My mother and grandmother have a history of these horrific, nauseating headaches, as well. So many times, Lauren, you have lain on your bed, or the floor, or the sofa, moaning, whining or screaming. When I have a bad migraine, your dad comes home from work immediately. I can’t imagine not being able to ask for help during the intense pain and illness that accompany it. Are you hurting like this and unable to ask for help, Lauren? Are your whines a cry for help that sends Mom and Dad’s nerves up a wall and leads them to act in ways that worsen your pain rather than comfort you?
Gas pains and heartburn can be so intensely painful until relieved. I couldn’t begin to count the times that you have thrown a huge fit, Lauren, perhaps hitting someone or hurting yourself in the process, only to be completely over it upon passing gas. That piercing pain in your middle must feel like someone is stabbing you with a long blade. I don’t blame you for being so angry with the loved ones around you who aren’t fighting to make it stop! It must make no sense when, instead, we fight to make you stop.
Even when we do have a firm diagnosis of a urinary tract infection or ear infection or strep throat, how may I help you, my love? I cherish the memories of nursing my babies to health when they were sick. Whether it was Bryn or you who was sick, we knew it meant lots of rocking, nursing and cuddling. I held you longer before laying you down in bed, gently rubbing your head, pushing your hair back from your face with each stroke. It was probably when you stopped nursing that you also stopped rocking and stopped cuddling. What does that leave us to do when you’re sick? I’m an expert at forcing medicine into you through an oral syringe. But afterward, if it was bad-tasting medicine, our relationship is worse off. You’re certainly not going to allow me to caress your feverish forehead after I’ve forced the worst tasting liquid in the world down your throat. (Talk about being kicked when you’re down!)
I know your autism makes it hard enough to face the strange day-to-day demands of the people around you. It’s hard to look us in the face and to let us hug you when you don’t know where our hugs are going or how long they’re going to last. But when you’re feeling sick and having the toughest time coping, that’s all your mom knows to do for you. I want to hug you and caress you, so you can relax and rest, knowing you’re loved while you heal. But you tense up and push me away, looking at me with fear and confusion, wondering why, if I love you, I allow this illness to torment you. Oh, my dear Lauren, if ever there were a reason to speak . . .
A Moment in the Life . . .
I hear her running through the house. She turns into a tornado only when she’s naked. Is it the fear or the excitement of getting caught that makes her move so fast?
Six years old and no desire or inclination to sit on the toilet. That’s why the stripping is a problem. I really don’t mind my child being naked in the privacy of her own home, if it’s more comfortable. But I do mind the poop and pee. And so does her dad, who comes home from work to clean multi-room messes, as he knows it’s impossible for me to take care of her and clean, too.
Each time I recognize the rhythm of the pounding feet, my heart rises into my throat. I look into the family room, but she’s turned a corner. I try to catch her head-on in her bedroom (there are two doors) but she must have sensed my plan and doubled back. Or maybe she’s now able to become invisible—today it wouldn’t surprise me.
Finally, I take the nonchalant approach. My calm step exudes, “No, Mommy hasn’t noticed that you’re naked, or that you’re even near. I’m just fetching something from the dining room.” As she curiously sidles up to me, I suddenly seize her hand. She drops to the ground, dead weight, not willing to concede defeat quite yet.
I don’t know whether it’s because I’ve just come from five minutes of stolen reading time and am feeling refreshed, or I’ve subconsciously realized a need for the change, but this time I don’t attempt to coax, pull or drag this unwilling body into position to walk to the bathroom. Instead, I squat down, wrap my arms firmly around her and scoop her up as I did when she was a baby—before I knew she had autism—when my foremost thought was always, “Let no harm come to you.”
“You must be cold,” I say, and she looks up at me in amazement. She senses no frustration about ruined carpeting or hours spent scrubbing floors and washing linens. She senses only unconditional love. With a growing smile, she touches her forehead to mine, looks deeply into my eyes, then quickly licks my lips. We both giggle about our special kiss, then I carry her into the bathroom.
Though I can’t promise my reaction to the next stripping episode will be as patient, I hope the memory of this one will help make it so. For though there were no words, I knew what the smile, the touch, the kiss and the giggle were all saying: “You are the coolest mom in the world! I think I can be brave again tomorrow—even when things get really scary!”
This is the time of year when the wisteria is in full bloom down south. I have a fascination with wisteria. I have a fascination with anything that exudes beauty and ugliness in the same moment. Though the wisteria vine is too thick and its leaves too scarce to provide nice coverage all year, for a few weeks in the spring, the flowers are magnificent. And the aroma is inescapable. I know this because wisteria has meandered from my neighbor’s back yard over some branches and across some overgrown shrubbery outside my kitchen. For a very short time each year, I walk out my back door and am almost knocked over by the scent and hue surrounding me.
Today I drove down a road lined with a wall of wisteria. From afar, the lavender flowers were attractive, but the delicate perfection of each blossom certainly wouldn’t have been apparent to anyone without wisteria experience. The flowers droop from gangly vines with small pale green leaves, so there’s no strong contrast. The flower color is pale compared to the azaleas, forsythia and hyacinth that bloom in yards everywhere at the same time of year, that they’re truly wallflowers—likely to go unnoticed by those looking for the obvious bright splashes of color, and by those gazing downward, looking for flowers placed in common fashion in the landscaping.
This year, we’re slowly hacking away at the overgrown trees and bushes that support the wisteria outside our kitchen. I’m feeling torn about tearing away at something that requires minimal support to exist. But the original mass in my neighbor’s yard will be left to regrow, and the opportunity to reflect on wisteria and the qualities it shares with Lauren has been of value.
This isn’t the first dichotomy that has brought Lauren to mind. Craig often refers to our youngest as our “diamond in the rough.” Some days, however, there’s no denying that she’s more like a lion in sheep’s clothing!
A few years ago, I was at church and there was a young, enthusiastic missionary priest, named Fr. Brian, saying the Mass. He had come from Brazil and had draped the altar with tapestries and blankets woven from the brightest cotton threads I had ever seen. Some had simple silhouettes of farm scenes woven into the design, but most were row after row of color. Hundreds of joyful colors seemed to be used in each piece. Row widths and color choices seemed to be random, as though a free spirit with no thought for order or the difficulties of life had thrown it together in between dances. But looking closely, the taut and meticulous stitches revealed the skill of an experienced craftsman.
Fr. Brian told the congregation that having these pieces around him enabled him to speak easily about his mission, because they exuded the warmth and joy of the people who made them. Then he talked about the living conditions of his friends in Brazil. They have no running water, bathrooms or televisions. Many have lost family members to common illnesses because of the inaccessibility of medical care. They speak of Americans as friends and without jealousy, even though they know what prosperity we live in! Externally, these people would seem pitiable to us Americans. But it wasn’t the external Fr. Brian wanted us to see, as he knew that would cloud our minds from the truth. It was the tapestries that best revealed them, and their spirits.
After Mass, I looked over the products that Fr. Brian had brought from his Brazilian friends to sell for the mission. I didn’t have enough money to buy a beautiful rug or wall hanging, so I perused the table looking for something inexpensive to take home as a reminder of that night. Fr. Brian walked over to the table and I told him how much his sermon had meant to me because, like his Brazilian friends, my daughter, Lauren, had an amazing and joyful spirit. But her circumstances made it difficult for those using worldly standards to see it. I told him I was looking for something in vibrant colors to remind me of her vibrant spirit when even I was judging her by worldly standards.
Fr. Brian pulled a beautiful blanket out of a pile and said, “Here, this is for Lauren.”
“Oh, it’s beautiful, but I can’t afford that tonight,” I said.
“Oh, no, this is for Lauren from Fr. Brian,” he clarified. “Tell me more about Lauren, and when I get home, we’ll be praying for her, and you can pray for all her friends in Brazil when you see this blanket.”
This wasn’t a gift to be refused, so I told Fr. Brian about Lauren . . . and her autism, and some of her challenges, and about her beautiful spirit, and the joy she brings to all those who set aside some worldly standards long enough to glimpse that spirit. Every time I pull that blanket from Lauren’s dresser drawer, I think of her friends in Brazil. When she’s near, I tell her about their challenges, then point out the bright colors. And I pray that their economic and physical circumstances improve, but that their hearts and their handiwork always remain the same.
I was driving Lauren home from school, when that feeling in my chest was there—again. I wanted to cry. I wanted to talk to someone. I wanted someone to say, “You go lie down and I’ll take care of everything for a while.” But I had plans to go to the grocery store, so I tried to put a smile on my face and I spoke to Lauren about her day.
It had been Lauren’s first day back to school after Easter weekend. I don’t know whether the candy she’d eaten on Sunday was the culprit (it had contained dairy, gluten and artificial ingredients), but Lauren had not done well at school that day. Though her teachers are generally positive, today when I walked into the room, they all looked harried and exhausted. One teacher was standing in a wary stance over Lauren, and when she redirected her, it was not in her usual sing-songy voice. The lead teacher hesitantly told me that Lauren had been pretty happy today, as well as completely out of control. She hadn’t joined the group for any activity and hadn’t sat down for anything except to eat. She had spent her five hours there running from one piece of mischief to another. I knew exactly what she was describing, as Lauren had been behaving the same way at home over the weekend. I appreciated it (on one level) when the teacher added as I headed out the door, “I feel badly for you, because we have the three of us here tag-teaming and it’s hard. I can’t imagine having to do that alone for any length of time.”
What was upsetting me in the car was not that Lauren had “misbehaved” or disappointed her teachers. It wasn’t even that I also had no idea how I was going to handle the next few hours without back-up. (And if you’re picturing a S.W.A.T. team when I say “back-up,” that’s not so ludicrous.) Panic was rising within me because I was at a complete loss. I had no idea what was causing Lauren’s difficulties. I had a bunch of theories—gluten she had gotten into on Easter, the weather, a serious yeast overgrowth that I felt guilty about not yet having attacked—but no hard evidence to support any of these.
I took Lauren home so she could use the bathroom before going shopping. She struggled and kicked me as I tried to redress her. Normally, I would take physical control of the situation and not tolerate such abuse, but as I grabbed her wrists to protect myself, I saw a wound on the side of Lauren’s middle finger. It looked like a large blister had popped and fresh, bright red flesh was seeing the light of day for the first time. My chest muscles tightened and my lungs felt constricted. What had happened to my baby? That’s not a place you get a blister from hanging on the monkey bars. Had she burned her finger and no one ever knew? Was she in severe pain, but unable to tell anyone? Did we ignore her or were we even callous to her at the time she was trying to express her pain because she whines so frequently? I knew she wouldn’t let me put a cold cloth, antibiotic ointment or a band-aid on it, so I could do nothing to “mother” her at the moment but say “My poor baby” as sincerely as possible.
I could feel my cheeks fill up with a need to cry. I recognized this now for the panic attack that it was. I’d had a few of them since Lauren’s diagnosis. My predominant symptom is an overwhelming feeling that I can’t handle the responsibility before me. At that moment, I am physically weak—drained—and require every ounce of resolve just to follow through on the simple physical motions of the activity at hand, be it driving, tying a shoelace or dressing my child.
Craig was working at home that day, so I went to his office to speak with him, but he was on the phone. Lauren would be naked again within minutes if I didn’t put her in the car, so I had to deal with this myself. I guess God had seen these attacks coming before I did, as about six months before my first one, I had learned that a relative had a history of panic attacks. Though I had never given them any thought before, she had described to me how she talks herself through them. In this instance, I kept telling myself, “We’re just going to the grocery store. It’s not more than I can handle. I’ve done it thousands of times before. Lauren will be in her stroller. It’s just the grocery store. Focus on the grocery store.”
Of course, it wasn’t the grocery store that had sent me into a tailspin of self-perceived powerlessness. It was failure. Knowing whether your child is sick or injured is a primary function of being a mother. Being there to ease her pain, or at least sympathize with her during her pain—that’s fundamental. I had failed at both tasks and had no idea how to do it any better next time. Usually, when I’m faced with a challenge, I simply find the information I need to decide how to handle it and confidently pursue the solution. But in this instance, as so often with Lauren, there’s no information to be had. The source is not speaking and can’t even confirm my suspicions. There’s nothingness in front of me. I’m free-falling into the future with no footholds. That’s a reason to panic.
When I took on the job of mother, it was with the enthusiasm of an astronaut accepting an assignment to Mars. During my maternity leave, I spent a nap-time figuring out how we could afford for me to quit my job, so that I could stay home with Bryn. Craig walked through the door that evening and I announced, “If we sell the car, and live frugally” (I had listed all the numbers) “we can afford to have me stay home.” I thought Craig would nervously question the plan initially, so he surprised me when he said, “Great! Let’s do it!” Our income immediately dropped to less than half of what we’d been living on. It was very difficult. I was thirty miles from any friends, relatives or shopping, and I had no car. Craig’s car was provided by his company.
From time to time in those early years, Craig worked a second job in the evenings. His parents and mine knew we were struggling and helped out at times when they saw a need (for which we are eternally grateful). When arguments began, it was because of stress over money. It was never about money, as we both always agreed on our financial plan of action, but because of money—it’s scary not knowing how you’re going to make it until next month. We believe most of our choices have been right for our family. We have consistently agreed upon ideals, then done our best to live according to those ideals.
I often confidently refer to myself as a professional mother. I have read more books about child-rearing, discipline and autism than I ever read for my bachelor’s degree, and I have spent years trying to put this information to use for well over forty hours a week, so aren’t I a professional in this field? (Congratulations to you if you just realized you were, too.) As a professional mom, I have chosen and developed ideas about the best way to raise a child. Educationally speaking, I was determined to pass on to my daughters a love of literature and a desire to seek information simply to satisfy their own curiosity. I also wanted them to have every opportunity to explore and express their personal creativity.
To fulfill these goals, my plan was four-fold:
1. I would read to them often, at the very least before bedtime.
2. I would have many children’s books always available for them within reach.
3. We would visit the library frequently so that they would be comfortable there and familiar with its workings.
4. They would have free access to toys and art supplies, so that they could easily explore and learn about their world in free play and feel comfortable expressing themselves through art.
Now, I wasn’t approaching this wearing rose colored lenses. I don’t attempt anything without first getting organized. (The words “organization freak” have been applied to me.) Fortunately, we had furniture for only the family room at the time, so when Bryn was a toddler, Craig and I dedicated the living room to the children’s development and put plastic storage units all along the walls to neatly keep their toys and art supplies. Bryn has always been obedient and respectful (generally speaking) so she asked before taking down anything complicated and helped when I said it was time to clean up. The system worked beautifully while Lauren was a baby. Even in the early days after her diagnosis, she left virtually everything alone. She was in her own little world at that time, preferring to stare at her hand rather than to pull paper and markers off a shelf.
When Lauren was about two years old, we decided to pursue the Options Institute method of putting toys up high, so that Lauren would have to initiate some kind of communication to get anything of interest. Suddenly, all of the children’s toys were out of reach. Bryn’s desk and art supplies were still at ground level, but that didn’t last long. Lauren soon learned to use the desk and chair as a stepping stool to a toy she desired, bypassing any need to communicate. She also developed a strong desire to throw things. Though it took only a second to strew all the art supplies across the floor, that second of flinging was worth any discouragement we could conjure, so the art supplies disappeared, too. Bryn’s piles of impromptu paintings of Mom or the cats or just a montage of color were a thing of the past. Within a year, even the shelves came down, as Lauren loved to do pull-ups on them and to hear the sound of toys crashing to the floor. I particularly hated the hundreds of dents that a bucket of duplos or matchbox cars could leave on my hardwood floor in seconds. Over the years, the toys have gradually disappeared to the point where closets and toy cabinets have locks on them.
Our beautifully “handcrafted by Grandpa” bookcase of children’s books also had to disappear for a few years, as for awhile, there was nothing Lauren enjoyed more than to strew books all over the floor. I tried forcing her to pick them up with me, and even tried turning the bookcase around to face the wall, but she would still find a way to knock the books off the shelves within seconds. Hundreds of thin books took hours some days to pick up. The bookcase finally went into a locked closet. “You’ll just have to ask for them when you want some books to read,” I told Bryn, and she agreed, understanding the problem.
I proved my educational theories by not implementing them. When Bryn couldn’t see her toys or books, she forgot she had them. I hated having the television on, but it often kept Lauren happy, so it was often on and Bryn was in front of it, too. Bryn didn’t think to ask for a book or crayons and paper unless I was on top of things enough to suggest it to her. She was always delighted at the idea, but, like most people, Bryn is a visual person. When something isn’t visibly available, she’s not going to pursue it.
Going to the library became difficult when Lauren started running away from me and having tantrums in public. Though I longingly watched moms and their preschoolers feed the ducks in the pond next to the library, that was also off limits because Lauren didn’t understand that there are some bodies of water not intended for swimming. I was grateful that friends could take Bryn to story hour at the library, but I also felt an enormous sense of guilt.
I remember trying to explain my feelings to Craig one day when I was feeling particularly helpless. “Imagine,” I said, “that at work, you set out to do what you were hired to do. You research the best way to approach a problem and enthusiastically begin working towards a solution. But at every turn, you’re thwarted. Day after day, even though you hate the fact that you’re drifting further and further from the best methods to handle this project, you’re forced to make compromises. In the end, you complete the project, but no one’s very impressed, not even you, because you knew the ideal and you ended up so far from it. Now imagine that this happens on every single project that you undertake. Don’t you think you would feel a sense of failure?”
“Yes,” he said, “but I could always quit. And my projects are nowhere near as important as your projects.”
Hooray! He understood. And now he could begin to understand my overwhelming sense of guilt—these “projects” I’m failing at are the most important in the world.
Feelings of failure and guilt have also arisen from some of my longer term ideals. I’ve known since I was a teenager that I wanted to get married and have children someday. My formula for success came from my own family, of course, and the priorities I had laid out were simple and reasonable. Two priorities involved church. My family would be at Mass every Sunday, sitting in the front pew so that the children could focus on the priest and the activity at the altar rather than be distracted by misbehaving children in their view. (This was my mother’s trick.) And my family would pray before each meal and enjoy conversation at dinnertime.
Lauren has not attended church since she was about two years old. As soon as she discovered that she could crawl under the pews to escape, it became impossible to keep her in the pews with us for even a minute. I attended church with Bryn on and off for a few years without Craig and Lauren, but I felt bitterness burning deep inside of me as I sat there, silently asking God why he would foil a person’s plans to attend church as a family. I saw other families sitting together week after week and became angrier. I would think to myself, “You don’t appreciate the privilege you’re enjoying just being here together.” I would critique every word of the priest’s homily for an ounce of truth. Unless he was talking about the pain and anguish life on this earth entailed (which our cheery priests never addressed), he wasn’t speaking the truth, as far as I was concerned.
Prayer and conversation at dinnertime were just as challenging. For about a year, Lauren didn’t want anyone sitting at the table with her, particularly not her sister. She would push us out of our chairs and scream and hit if we refused to budge. Our dinner table had become a battleground. We had the option of letting her eat separately, as we had a child-sized table the girls used for snacks, but I refused to give in on this issue. We began each meal sitting down together, and when Lauren couldn’t handle it, she went to her room to calm down. The door was ajar, in case she decided to join us, but this was usually too difficult for her, so we listened to her screaming for most of the meal. I didn’t even attempt to pray before eating most meals because I didn’t feel thankful at all at that moment.
Though I’ll probably never know for sure, I’ve always believed that Lauren’s difficulty at the table was due to the stressful face-to-face interaction required there. Bryn sat directly across from her sister, which helps to explain why Lauren’s opposition to her was the most vehement. Lauren also seemed less able to focus directly in front of herself, where her food was, than across the table at someone else’s plate. She often seemed angry that Bryn was eating the food on her plate, so I would pull Lauren’s plate across the table until she focused on it, show her that she had the same food and push it back to her. I often redirected this way throughout the meal.
Whatever the reason, one day, Lauren was suddenly able to sit at the table with us. But she was still easily upset. I created a rule that dinnertime was to be quiet and calm. We spoke very little, and when conversation became animated or loud, it was put to a halt. Gradually, over the next year, a calm dinner table wasn’t necessary for Lauren to stay with us, and in fact, mealtime is now usually Lauren’s favorite part of the day. Occasionally, we have to declare a mealtime quiet because Lauren’s had a bad day and is very sensitive. But usually, not only is there lively conversation, but Lauren often laughs at some of our jokes and tries to verbalize a story about her own day. When we can make out a word and respond to what she’s thinking about, she’s tickled down to her toes and giggles along with the rest of us at her success and the joy of sharing in a conversation. Just thinking about this success makes me feel silly writing a chapter about a mom’s feelings of failure and subsequent guilt. These special moments can instantaneously make me feel like the most successful person in the whole world.
It’s so important to acknowledge a mom’s feelings of pain, despondency and failure, but it’s even more important that she experiences overriding moments of joy.
Today, we’re able to have the children’s bookcase out. In fact, it’s at the end of Lauren’s bed, and I’ve caught Lauren picking stray books up from the floor in front of it and placing them back on the shelf. Though she won’t do this with me, Lauren loves to lie on her or her sister’s bed while Bryn sits Indian-style and reads her a picture book with some favorite characters in it. Just having her sister all to herself without an adult dictating the moment seems to tickle her enough to stay until the book’s end. Usually, I discover this scene after a panic-stricken race through the house when I realize Lauren’s not in one of her usual niches. That’s probably why, when I open the bedroom door and find two sisters peacefully enjoying a book (and each other’s company), the rush of joy I get supersedes all the anguish, at least for the rest of the day.
Life is still not perfect. There are many weeks that we have our carpet steam cleaner out three or four times to clean up after a BM incident, or a dumped bottle of shampoo, olive oil, detergent or cleaning solution. We call poison control’s emergency number at least twice a year (though we haven’t been advised to rush to the hospital yet). We have only one or two families who still include Lauren in invitations to their homes. Many mornings I wake up to an inexplicably angry child whose whining is like scrap-metal scraping my ears. And Lauren is still at the severest end of the autism spectrum by many criteria.
I think I believed life could be perfect when I entered the jobs of marriage and child rearing. I foresaw heaven on earth in my visions of the family I would have some day. Why not? I’m a talented woman who would only marry a great guy. (I did get that part right.) I knew how to avoid the pitfalls that befall many of America’s families and I was confident of the efficacy of my theories on raising children. (All experienced parents, stop chuckling before reading on.) Well, I still believe in the efficacy of my child-rearing theories and some days I wish I had another family to try them on! But for the family God handed me, those theories needed to be thrown out the window (or at least constantly revised until they barely resemble the original ideas). What a lesson in humility.
Today, I’m very aware that life on this earth cannot be perfect. My motivation (when it exists) for waking up in the morning no longer has much to do with the gains and improvements I can make in our lives today. It rarely has to do with foreseeable fun within our plans for the day. I know that what I plan to be a fun activity or outing can turn nightmarish in a heartbeat. But when a fun day is had by all, it’s never taken for granted and is always appreciated like treasure from Heaven.
My most consistent motivation for getting out of bed each morning is my certainty that this life is but a drop of water in the Niagara Falls of the big picture. I’ve never been to Niagara Falls (which is a shame, considering I grew up in New York State) but I’m sure the grandeur that awaits me in Heaven will make these falls look like spit in a sink. When I wake up in the morning and realize that Lauren may never talk, I’m able to swing my legs to the side of the bed, stand and face the day anyway because I know she’s going to have the sweetest voice in Heaven. Though I may not even care what her voice sounds like in Heaven. Our joy at being in the presence of God will be so consuming, the fact that my child once couldn’t speak will be the faintest of memories. That’s perfection I can’t come close to creating in my family, and that’s joy for which I’m more than willing to wait.
For now, I’ll take the little glimpses God blesses me with to keep me running the race (or plodding the course). When I lie down with Lauren at night and, in the dark, she finds my face, turns it toward hers and plants a kiss on my cheek for the first time, pucker and all, I’ll close my eyes and whisper, “Thank you. I can wait for the rest.”
Where a husband and wife blog to: continue the story told in a book called Dancing in Cornmeal: Life with Autism; enhance the conversation about autism; relieve a writer's need to write; inspire (when the stuff here is really good); network; and share - especially recipes that follow the SCD and Paleo diets. See "Welcome" under TOPICS for a better description, then just keep reading along...