He drew a circle that shut me out—
Heretic, rebel, a thing to flout.
But love and I had the wit to win:
We drew a circle that took him in.
-Outwitted by Edwin Markham
How It All Began
It was a Spring weekend in upstate New York. Our fifteen-month-old daughter, Bryn, was happily riding in the back seat of the car. My husband, Craig, was driving and I sat in the passenger seat as we made our way to my parents’ house for a little family reunion. I don’t know why, but the two hour drive between our house and my parents’ was always beautiful. I don’t recall a trip that wasn’t sunny with the bluest of skies. Particularly when we drove beside the Neversink reservoir. We passed through miles of woods, then it opened up on one side to the man-made reservoir. It was during these miles that I said to Craig, “You know, there’s the slightest chance that I might be pregnant.”
I loved telling Craig such things. There are so few things with which you can so quickly and easily impact your husband’s emotions. I’ve only done it twice, but it was fun both times. My body works like a clock and, though I was only one day late, I had been pregnant before. There weren’t any other definite signs, I just felt pregnant.
“But, we didn’t...” he started to say.
“Oh, yes, we did,” I corrected him. “I’ve been thinking over the past two weeks that I may have miscounted.”
“Wow,” he said. We agreed that if there were no changes by Monday, I’d buy a home pregnancy test. Of course, I was visiting my mom, so I couldn’t resist telling her and she bought the pregnancy test for me. It turned out to be fun watching the drugstore clerk get a price check on the particular box Mom placed on the counter. The cashier was obviously wondering if the test was for this probably post-menopausal woman.
Over the weekend, my dad grilled a variety of meats and I couldn’t eat enough. I felt ravenous and at one point, both Craig and Mom looked at my plate, rolled their eyes and laughed. Craig decided he’d seen this behavior once before and took action. My dad is known to like his hamburger mooing and his grilled chicken clucking, but we had always just laughed about it and eaten around anything too raw for our tastes. This day, Craig cut open each piece of meat before I ate it and boldly threw any suspect pieces back on the grill, telling Dad he preferred it well done.
On Monday, the pregnancy test was positive and the entire pregnancy was as carefully tended as that first weekend when we only suspected. On exactly the first day after the first trimester, my morning sickness abated. I remember the day well, as it was also the day we moved into a house in Pennsylvania. I had delivered my first baby on her due date, and this time, again, I delivered a baby girl on her due date. We arrived at the Birthing Center in the pushing stage. The mid-wife walked in a few minutes after we did and said, “OK, you’re all ready. You can push.” About an hour later, Lauren Therese was born. The umbilical cord was wrapped around her neck for a moment, but the mid-wife and nurse worked fast. Her first Apgar score was 8 and her second was 10, just like my first baby. My first baby, however, was born in a hospital and experienced a few more complications. My first delivery had been excruciatingly painful, making this one seem like a walk in the park by comparison. I went home six hours after delivery and happily woke up to give Lauren her feedings in the middle of the night. I couldn’t even get up to give Bryn her feedings her first week home.
Relatively, Lauren’s birth was easy on me and seemed to yield a perfectly healthy baby. Over the years, moms of children with autism have asked me, “Did you have a C-section, too?” I guess in hopes of validating their suspicions over what caused their child’s autism. But I can honestly say that there was nothing about Lauren’s birth upon which I could possibly place blame. Both my mid-wife and Lauren’s doctor made trips out to our home on her first and second days to check her. She was a little yellow with jaundice, but a few hours on my bed in the sunlight coming through a big bay window pinked her right up. (It was winter, so we turned the upstairs thermostat to 80, stripped the baby, then my mom and I took turns sitting half dressed next to her.)
During Lauren’s first check-up at the doctor’s office at one-week-old, the doctor made one memorable comment. After thoroughly looking Lauren over while speaking to her in a quiet “baby” tone, he turned to me all business and announced, “She’s a keeper!” To this day, while playing and cuddling with her, Craig, Bryn or I are often heard saying, “Dr. Moeser was right, Lauren. You’re a keeper!”
Now I’m going to jump ahead nine years—to today. This chapter has been very hard to write because for most of the last three months, Lauren has been a very difficult child. She has been uninterested in anything but seeking sensory input (self-stimming) and she has frequent outbursts of anger or very sad crying. When she is angry or upset, she hits or bites herself or others. When we leave her alone to calm down, she continues to be aggressive and particularly to bite herself. She doesn’t lack nerve endings. She has bruises where she has bitten herself and she avoids those areas. This tells me how severe the pain is that is causing her outbursts. If she seeks the pain of biting herself to somehow diminish the agony of what precipitates her outbursts, that agony must be unbearable. Certainly no form of physical punishment is going to speak to her about her behavior. Have you ever been bitten? That’s the worst kind of physical punishment.
At one point, Lauren had worked her way up her arm and began biting her shoulder. We can’t get near her when she’s like this, as she hurts us, and our attempts at intervention have consistently proven only to escalate the violence. We’ve removed all hard surfaces from her bedroom, except the frame of her bed, and this is her place to go or to be placed when she’s out of control. Sometimes we have to lock the door for a few minutes to keep her in there until she’s calm enough to come out. But most of the time, she willingly throws herself on her bed and doesn’t try to come out until she’s calm. I believe she doesn’t want to hurt us, or to have us see her this way. She wants every opportunity to calm down as well.
After about two months of this behavior, Craig and I decided we had to rule out a physiological cause. Though she had no symptoms of illness, we took her to her pediatrician and asked for all orifices to be checked out for anything that might be causing pain. Lauren’s usual doctor wasn’t in and a young doctor newer to the practice came into the examining room. I knew from having seen this doctor with Bryn that this man was a kind and thorough doctor. I felt bad for him knowing what he had in store with Lauren. Lauren is terribly frightened of doctors’ offices, or any place that resembles a doctor’s office with a waiting room and a mysterious hall with little rooms leading from it. I’m sure the unpleasantness she suffered as a young child being tested for UTI difficulties, then for her autism diagnosis, did nothing to squelch any fears of this environment. But lately, with every trip to the pediatrician and dentist, her anxiety has grown. This particular visit, despite our reassurances all the way there, as soon as we drove into the familiar parking lot, Lauren began sobbing. In the waiting room, she made a soft, high-pitched whine over and over again as her body shook with fear. She reminded me of a wounded animal, wanting help but fearful of the help walking toward her—sure that this will only lead to her complete destruction. Every time people opened the door to the hallway to the examining rooms, Lauren jumped up and quickly closed it behind them, her last bid at separating herself from the long walk to the “torture chambers.”
I’m sure the doctor had heard the intermittent sobs and our struggle with Lauren in the waiting room, then in the hall to the examining room, then in the examining room. I was so proud of him when he quickly figured out that no attempts at calming would help. Get in and out as quickly as possible was the only strategy for this situation. Craig held Lauren in his lap. I held her arms and attempted to block her legs while the doctor quickly used his various scopes and a tongue depressor, then took a swab to her throat. (I don’t remember how many tongue depressors she broke with her teeth trying to keep him out.) Lauren received a clean bill of health from the visual check. We waited what seemed like a very long time for results to a strep test. Lauren paced the room sobbing. The doctor finally came in and told us the strep test was positive. “Hooray!” Craig and I said in unison, then laughed and explained that we’re just so happy to have something to treat.
“But,” the doctor said slowly, with eyes wide, “you’ll have to give her an antibiotic . . .we have a one time shot I could give . . .” I smiled as I told him that she took liquid antibiotics just fine. I’m sure the doctor couldn’t imagine us ever getting that mouth open again without a professional and some vise grips. It made me realize that Lauren’s doctors have never seen her calm, cooperative and communicative (beyond communicating very well that she wants to leave). I knew short-term high dose antibiotics made Lauren’s sensory system go haywire. I think the only time we had ever seen self-abusive behavior before was when she was on the first day of a three-day antibiotic, which we immediately traded in for a lower dosage one. I reassured the doctor that Lauren was a different child outside the doctor’s office and that she was accustomed to taking medicines and supplements with no problem. He just slowly nodded in disbelief. Later that night, along with my prayers for Lauren, I threw in one for the doctor—that today’s experience not frighten him into a different career.
Lauren’s behavior was different but still aggressive while she was on the antibiotic for ten days. From previous experience, we assumed it would be. The day after she went off the antibiotic, we went outside for one of the first times after a cold winter. Lauren suddenly started crying and acting angry and we didn’t know why. Craig took her into the house while Bryn and I went to some appointment in the car. When we returned, Craig said, “Well, I know why Lauren was so upset. I gave her a bath when she came in and bumps started appearing all over her arms and back. She must have gotten into a nest of fire ants!” Anyone who lives in the Southeastern United States appreciates the horrific sensation of even one fire ant bite. We had never seen an ant on her, but Lauren had about a dozen bites on her arms, back and stomach. The year before, she had one on her foot that grew to be a blister the size of a large jelly bean. She couldn’t put a shoe on that foot for two weeks. So, Lauren’s I’m hurting and angry behavior continued for another two weeks and we continued to explain it away with the ant bites.
When the ant bites healed and the behavior continued, our family didn’t know what to do but pray. In between the opportunities to practice self-defense and our heartbreak, we prayed and we asked friends to pray. We also looked for answers. Another strep test showed the strep was gone. I began looking at what other changes may have been made without our realizing it.
Lauren had been on a high dose acidophilus (healthy flora—an anti-yeast supplement) for about a year. I remembered that her last bout of very poor behavior occurred before she went on this supplement. We had seen huge improvements immediately after she began taking it. I knew when Lauren started on her antibiotic that antibiotics kill healthy flora. However, I thought that Lauren’s supplement dosage would be enough to counter the attack. I also realized the timing of another dietary change we had made: Craig had found a bread that Lauren would eat at about the same time she started on the antibiotic. (Lauren is gluten-free so finding a gluten-free bread that makes tolerable peanut butter and jelly on toast—her favorite—seemed like a miracle.) In other words, after a long time without yeast, we had introduced a yeast bread to Lauren’s diet (which she ate for as many meals as we would allow) as well as jelly (a sugar which converts to yeast in the body) while she was also taking an antibiotic. All of these things contributed to an excess of unhealthy flora (yeast) in her digestive tract and we hadn’t increased her dosage of healthy flora to counter it and keep her system balanced. Now, I’m no nutritionist or chemist, but I felt sure this barrage of unhealthy flora on Lauren’s system couldn’t be good. I tripled her supplement dosage and told Craig, “No more bread or jelly. It’s back to the gluten-free rice crackers until we find a decent yeast-free bread!” (Craig is often the parent in charge of Lauren’s breakfast and PB&J on toast had quickly become an easy favorite so this was very sad news to him.)
Within about three days, we had our sweet child back. The first morning Lauren woke up, came into our bedroom and giggled as she tried to kiss us awake, I rejoiced! For too many mornings, Craig and I had been awakened by someone throwing a fit or hitting us awake. After her morning bath, she sat in a chair and peacefully looked at a picture book, slowly turning the pages, smiling and touching favorite pictures. She hadn’t even been able to sit still for months, and if I’d handed her a book, she would have thrown it at me. I brought a puzzle to the table at snack time, talked about the pieces and asked her to help me put them back in, first one piece at a time, then two. She put all the pieces in before finishing her snack, then left the table with the puzzle and continued to take the pieces out and put them back in. I hadn’t gotten anything this close to academics near her in months! Of course not, I hadn’t been able to get myself close to her in months—certainly not without fear of being suddenly slapped or kicked. Thank you, God! Yes, I made some fumbling changes to her diet in hopes of hitting on something, but I never feel sure that what I’m doing is the answer. I’m certainly not going to go back to the ways of her worst angry days. I feel like we’re back at a plateau—a new starting point of possibility and hope. I just thank God for this and keep praying.
The rest of this book tells more of the story of Lauren and our family between the time of her diagnosis and this latest, difficult time we seem to have overcome for now. At this moment of my writing, Lauren is nine years old. As you can see, she is not cured of autism. Though we hear some word approximations every day and we have heard a few phrases come out of Lauren as clear as a bell, I don’t yet consider Lauren a verbal child. I praise her and thank God with her every night for the words that she said and that her family understood that day. Lauren seems so happy that I appreciate her efforts and that I recognize that we are part of the effort at understanding her, too. But Lauren primarily uses photos, pictures and gestures to communicate clearly. Lauren has said the word “cookie” very clearly in the past. However, if I hold a cookie outside her reach and require her to say the word to receive the cookie, she will try every other form of communication that has worked for her in the past to indicate that she wants a cookie. She’ll then try new forms of communication. (She’s usually quite resourceful.) But she may spend the rest of the day sobbing for lack of a cookie before she will produce any sound resembling “cookie.” Lauren’s speech therapist tells me the word for this is apraxia. She’s not being defiant. She’s not playing me for the fool. After all, she’s not a fool. If she could get the word out for something she wants, she certainly wouldn’t go without and search for whatever very difficult means she can find to communicate to her mom, “I want this.” Her communicative pleas are quite understandable. She’s often saying, “I want you so much to understand me. Why don’t you understand me? Do you understand me and are just saying ‘no’ to my needs?”
One day when I was probably questioning every choice I’d ever made for Lauren because she wasn’t speaking yet, I remember her speech therapist kindly hushing me. “Nannette,” she said, “Lauren will speak when she is ready to speak. We’re doing everything we can to encourage it, but she has to get to that point. That’s not something you can do for her.” One of my favorite speakers on autism, Diane Twachtman, says something else that reassures me. She talks about children with autism having the same desire to fit in and to be as independent as possible as any other child in the classroom or the playground. What motivation would any person have for not wanting these things? I see how Lauren imitates her family and friends like any other child learning a skill. She copies the way I “love on” our cats. She copies her friends, trying to wrap a sash around herself the way they do when playing dress-up. She copies the way we each use a fork to eat. She smiles and relishes the praise when she masters any of these things. I see how she loves simply spending time with her family more than anything in the world. I see how she imitates our sounds and turn-takes in “conversation” though we don’t understand her end of it. She obviously wants to join in what we all have going here. When she exhibits the desires of a typical child, how can I presume these desires stop when it comes to speech? She undoubtedly wants to be able to speak like all those she loves and admires. It is simply so very difficult for her because of whatever damage to her body or brain was caused by this thing called autism.
The rest of this book is about the difficulties, and the effects they have on a family. It’s about what we’ve tried and what’s helped and what hasn’t. It’s also about our joy and what we have learned—the intangibles that have probably most helped us get through the toughest moments in this life with autism.
The Four Questions
It’s always awkward telling someone for the first time that Lauren has autism. I commonly don’t know if the person already has a clue about her disability or if this will take them completely by surprise and make them feel awkward. As Lauren grows older, I think her autism is more apparent to on-lookers. However, I’m with her most of the time and have grown accustomed to her behavior and mannerisms, so I’m not too sure which ones make her look different. I also see more and more ill-behaved and hyperactive children whose behavior makes me think Lauren’s isn’t so unusual. But most of these children can answer the question, “How old are you?” or “What’s your name?” And that seems to be the big giveaway. That’s when I feel forced to say something to make up for her silence.
“She has autism and doesn’t have much speech yet,” I usually say, “but she’s nine years old.” It rolls off my tongue like a name, rank and serial number. After my revelation, I’m inevitably asked one of four questions:
1. What’s autism?
2. How did you know she had autism?
3. What causes autism?
4. What’s her prognosis? (Or some form of this, such as, “Will she get better?”)
This is one reason I wrote this book. I’m just so tired of answering these questions. I always feel that in the limited amount of time I have to answer (as Lauren is trying to run away or grab something off a store shelf, etc.) I don’t do the answer justice. For once, I’m going to sit down, take the time to think out my answers, and include them in this book. Then next time and forevermore, when Lauren is dragging me away as I’m asked a huge question, I can give the inquiring person the opportunity for a complete answer in way of a book title. (Or when I’m asked one of these questions at a party. My hosts must all be very tired of me reverting to this topic in every conversation. But when you have a child who finds a comfortable place in a new social situation, then won’t leave it, that can inspire some inquiring minds. Especially if the comfortable place is under a table or in the middle of a small, busy stairway.)
In answer to the first question:
What is Autism?
Autism is considered a neurological disorder that becomes apparent during early childhood. There is no medical test for autism. A diagnosis is made by parent and professional observation. If the child’s symptoms fall within the officially accepted criteria for autism, then a diagnosis of autism is given. Clusters of criteria fall under three categories:
1. communication (verbal and non-verbal)
2. social interaction
3. atypical behavior
Lists of possible symptoms of autism are found in literature and web sites from many autism organizations, such as the Autism Research Institute (ARI) and the Autism Society of America (ASA). But no list of autism symptoms is exhaustive. One child with autism may possess little or no speech, while another talks non-stop on select topics. Some people with autism have many behaviors that seem bizarre, such as hand flapping, spinning or moaning. Others are hardly noticeable in a crowd. Some adults with autism are married and hold jobs that require regular frequent interaction and problem solving. Others never live independently.
Autism is an umbrella diagnosis. This is what makes it so confusing. It is a label for a mix and match of a variety of observable symptoms. My daughter is non-verbal and has the diagnosis of autism. I know many children who speak and are in regular education classrooms who also have the diagnosis of autism. This leads to many problems:
1. Parents whose children are not speaking are often questioned by well-meaning people who say, “I know this little boy who is talking really well. Maybe you should talk to his parents and see what they did for him.” Usually, a child is non-verbal through no parental neglect in treatment. There just happens to be a broad range of levels within this diagnosis.
2. Parents seeking support at an autism support group may only find discouragement. I attended a support group for the first time years ago and remember listening to a father and mother go on and on about their fear that their son may be ambidextrous. Their greatest concern at the moment was that he wrote equally well with both hands. The boy was speaking and at grade level in most of his regular ed. class activities. I was on the verge of exploding before they stopped talking. If only my daughter, who was older than their son, would say a word or pick up a crayon! When I realized that most of the parents at the meeting had speaking children who were functioning at levels much higher than my daughter, I didn’t feel much camaraderie with these people.
3. Some programs claim to have cures for children with autism, but fail to mention that their success rate was measured using children who began the program at high functioning levels. Any two or three-year-old with autism who is speaking to any extent has a very good chance of drastic improvement in any reputable program. I was so glad when I listened to Tony Attwood, a Clinical Psychologist specializing in autism, say at a conference that no child should be thought to have a firm diagnosis of autism until he or she is over six years old. Any child under six who improves so dramatically that people claim he or she was “cured” of autism probably should not have had the diagnosis of autism.
There are many people, including myself, who believe that there should be great effort put forth to distinguish the various forms of autism. This would give parents a better understanding of the type of “autism” that affects their child and would give researchers, doctors and therapists better understanding of how to pinpoint research and treatment.
In an attempt to better address the broad range of autism symptoms and severity, the diagnosis of Pervasive Developmental Delay (PDD) was added to the DSM at about the time Lauren was diagnosed. Children who did not fit the severest description of autism began receiving this diagnosis instead of autism. As our Pediatric Neurologist said, “It just means that we have no idea what this child’s future brings or how severe the disorder will be for her.” Unfortunately, some diagnosticians must have presented this diagnosis as something very different from autism. I have met a few parents who didn’t know where to go to seek help because their children were diagnosed with PDD, so they didn’t think their child had autism. Many informational and support groups did start including PDD alongside the word autism, but I still encounter parents who insist that “My child isn’t autistic. She has PDD.” That’s as accurate as saying “This shape isn’t a rectangle. It’s a square!” (Squares are one type of rectangle.)
An official list of criteria can’t describe all the many ways that autism may affect a person’s abilities and behavior. Throughout this book, I tell many stories to help you understand my family’s experience with autism. However, the way that autism affects my daughter may be very different from how it affects a person with autism whom you know. It’s obvious that autism is an umbrella diagnosis when you observe a classroom or group of people with autism. But I am also reminded just by observing and working with one child that it is an umbrella encompassing many other umbrellas. I see symptoms of obsessive/compulsive disorder (OCD), Tourette’s Syndrome, ADD, ADHD and dyslexia in one small child at my house every day. These aren’t just the imaginings of a mom who minored in psychology in college. I have successfully employed many strategies encountered in books and web sites addressing these other diagnoses, not autism. Craig and I sometimes joke that his dyslexia and my OCD just happened to make up the perfect genetic mix for Lauren’s autism. He completely understands her inability to visually track and I completely understand her extreme need for order. It may just be a private joke, but I think we’re a step ahead of anything that the medical community will accept and agree upon in writing any time soon.
There are many people walking on the earth who possess some qualities of autism, but no diagnosis. I often wonder at the decision-making that went into deciding when these symptoms qualify as a disorder. At what point are a person’s symptoms not just part of his personality, but a disorder to be overcome? I gave this much thought today. Craig and I have had many discouraging moments with Lauren this week. Despite some gains being made, Lauren has begun biting and hitting herself from time to time, which she hadn’t done in weeks. Of course we’re concerned for her safety and health, but this time, it seems as though we’re also angrier with each other, and much sadder about the whole situation. A feeling of hopelessness is setting in.
I read portions of Donna Williams’ book, Autism: An Inside-Out Approach, to find answers to Lauren’s self-abusive behavior. I love Donna Williams. She’s taught me more about my daughter than any “expert” I’ve ever consulted. Just reading a few bits and pieces, I am reminded that autism is a big part of who Lauren is. Lately, we’ve been seeing the autism as the enemy, hoping that there are only one or two battles left to fight before it is vanquished. Donna Williams’ words suggest to me that Lauren will grow and change in tune with, and in spite of, her autism; just as any child will grow and change as he or she approaches adulthood, despite obstacles, and because of obstacles. But is this reason to breathe a sigh of relief? Lauren is still hurting herself and when anyone I love is hurting, I’m ready to go to battle for him or her.
This is one of those moments when I must separate the mom-self from the therapist-self to understand our situation. My therapist/theorist-self can easily see the bigger picture—that Lauren has made steady gains over the years in her ability to communicate and interact and that she will likely continue in this pattern. But my mom-self knows that as she grows larger, even if tantrums and aggressive episodes are fewer and farther between, it is becoming more and more difficult to get through them now that our daughter weighs over one hundred pounds and grows stronger each day. She is also not using the toilet independently and tends to rip at her clothes and fight to keep them off when she’s having a difficult time. It’s not the autism that is the enemy. It’s time. Puberty is just around the corner. How will Craig and I continue to care for our daughter if she has not overcome some of these problems by the time menses hits? This is why we have a pass/fail mentality lately. The only vision we have of our future if we “fail” to slay this monster that haunts her is very grim. I will love my precious child, autism and all, unconditionally until the day I die. But it may kill me sooner, rather than later, to see her and her family enduring the future we fear.
Time truly is the greater enemy. When Lauren was much younger, Craig and I were discussing the progress she had made and the various stages she had gone through, seemingly due in no part to any intervention or program we had undertaken. “I think autism is self-curing,” I said. “I think if given three hundred years, Lauren would have enough time to make all the adjustments she needs to make to adapt her brain and body to the demands of our world and the people in it.” I still believe this. There’s been no trick to Lauren’s slow but steady progress over the years. When we suspect that something is a problem for her, we make the adjustments needed, whether in the environment or in her diet. Lauren does this all the time, too. By closing all the doors to a room, turning all the lights on and off, seeking pressure or keeping a blanket over her head, she’s accommodating her brain’s and body’s differences. When a troubling behavior is suddenly no longer troubling her (or us), we could say that we successfully brought her out of it. But the fact is that this child with autism got herself through it. She’s slowly but surely “curing” herself of this autism with the help of some very committed associates—her family, friends and therapists.
The big problem is that we only have about sixty to eighty years on this earth. Lauren’s committed associates would like her to spend most of those years with the ability to express her needs, her wishes and her dreams. We want her to know the joy of relationships--the ins and outs and ups and downs of getting along with strangers, friends and family. We want the possibility to exist for a loving married relationship in her future. We want her to know God. And I want her to tell me all she knows about God.
That’s why the autism that affects Lauren is a disorder. The day she can have all the things I just mentioned, autism will be just an imperfect descriptor of some personality traits. But today, autism is standing in the way of relationships, dreams and opportunity; and sometimes it seems to cause her pain. So today, autism is the enemy.
“How Did You Know . . . ?”
Lauren was officially diagnosed with autism when she was twenty months old. Craig and I were told by many professionals who saw her that we were very fortunate to receive a diagnosis so early, as early intervention had proven to be very important in helping many children with autism. Ironically, if we had left it up to the medical community to catch Lauren’s autism, her diagnosis would have been much later in coming.
Lauren’s first year seemed normal in just about every way. She rolled over, sat up, crawled and walked on schedule. She was very interactive with her family, particularly laughing at all her sister’s antics. She was a peaceful, easy-going baby. Considering her sister had been much more demanding and kept me up many nights her first year, I felt quite blessed with my second daughter.
When Lauren was about one year old, my suspicions that there was something different about her became a little bit of a concern. I was sure that Bryn was consistently saying “Mama” by her first birthday, but Lauren had never said Mama and had perhaps blurted out a Dada only once. For a month or two, she had been saying something resembling “So Big!” each time we asked her how big she was. We’d help her throw her hands in the air and she would giggle and wiggle with glee at the game. But on her first birthday, I realized that we weren’t getting that out of her anymore, either.
Lauren also had some odd habits that I couldn’t ignore. She sometimes stared off into space and was completely unresponsive to anyone around her. While so absorbed in her own little world, sometimes her body would suddenly become tense and she would slightly shake all over. This frightened me and I often tickled or shook her until she came out of her bizarre stupor.
At Lauren’s one year checkup with the pediatrician, I mentioned my concerns to the doctor. I told her Lauren wasn’t talking yet. The doctor told me not to worry about it because some children mature at different rates. We were in the doctor’s office frequently at that time because Lauren had many ear infections and had to return for an ear check every time she finished a round of antibiotics. At every visit, I would mention her lack of talking, but this particular practice had six doctors and I saw a different one at every visit. Each doctor brushed off my concerns and told me to bring it up at her eighteen-month appointment if it was still a concern.
When Lauren was fifteen months old, I was babysitting a friend’s twelve-month-old daughter. Before leaving one afternoon, my friend told her daughter to show me what she could do. Her mom said, “Where’s your nose?” and this baby carefully pointed to her nose. Mom asked “Where’s your ear?” and this little girl pointed to her ear. This continued right to the belly button and I was legitimately impressed. I knew that my Lauren couldn’t point to any body part. I felt guilty. I had failed her as a mother! Despite the fact that I was a full-time mom, I thought that I must have somehow not taught Lauren something that I had taught Bryn. I laid her on the changing table after her bath that evening and said, “Where’s your nose?” She looked away from me. I used my most sing-songy voice to get her attention and said, “Lauren...show Mommy your nose.” She looked away again. After many more tries, I declared (I don’t remember if it was only to myself or aloud), “How do you teach someone who won’t look at you?!” I didn’t know at that moment how central to my life that question would become. I still fight this battle . . .
Finally, at one of Lauren’s sick visits, I again mentioned my concerns, perhaps more emphatically than before, to one of the pediatricians I had not seen in a few months. I told her how Lauren wasn’t talking or even pointing, and how I couldn’t get her attention. I didn’t say at the time that she didn’t seem to hear me, because I knew that Lauren could hear a few quiet sounds from across the house, such as the click of the television being turned on and the sound of water running into the bathtub. (Lauren loved to watch children’s videos and to take baths.) This doctor was concerned and gave me the name of an Ear, Nose and Throat specialist (ENT) that I should call to have Lauren’s hearing tested.
The first time I heard the word autism used in conjunction with Lauren was in a conversation with my mother. I had always shared my concerns about Lauren with my mom and she had spoken to a friend of the family whose degree was in psychology. My mom had told this friend about some of Lauren’s delays and interesting behavior, then asked, “Does this sound anything like autism to you?” The friend admitted to not having studied much about autism in school, but that it did sound like a possibility. Lauren’s ENT was the second person to say that word, “ autism.”
I took Lauren into the ENT’s office for a hearing test. It was a traditional hearing test, in a soundproof booth, with a bear or clown toy with cymbals in one corner and a different electrical noise-making toy in the opposite corner. I sat with seventeen-month-old Lauren in my lap facing a window where a technician sat on the other side. There were speakers in the booth and this woman directed me and spoke to Lauren over a microphone.
The first time one of the toys was activated, Lauren stiffened up and turned slightly in the opposite direction. I knew my child. I knew that this sound startled her and that her frightened reaction was a response to her hearing the sound. The technician activated the other toy and Lauren stiffened and actively avoided looking in that direction as well. The woman called Lauren’s name over the speakers and Lauren stiffened and looked down, not up as she was being told. I knew Lauren heard every sound I heard in that booth and that this was a very unpleasant experience for her. I wanted to say, “She heard that! Didn’t you see her stiffen?” But I was quiet, as I didn’t want to somehow taint the results of the test.
After the test, the doctor told me that Lauren’s hearing tested very poorly, but that could be at least partially from fluid that was still in her middle ear. She recommended surgery to put ear tubes in Lauren’s ears to allow the fluid to drain, then we would test her hearing again; only this time with a Brainstem Evoked Response, or BER, which would not require Lauren’s cooperation.
I know many young children undergo ear tube surgery, but that experience is burned into my memory. A body that small being anesthetized is so limp and lifeless, it’s frightening. Though the surgery lasted only about ten minutes, I could not have imagined how distraught I could become in ten minutes. When Lauren was wheeled into her recovery cubicle, I cried. Her body was laid on an adult sized bed pillow. I had never seen her on a pillow and it made her look even smaller and more lifeless. I sat close and listened for her breath while I waited for her to wake up. By the time we arrived home, Lauren seemed as active and happy as usual. She recuperated fine and her ear fluid finally drained.
The day of the BER, Lauren was given a sedative, then I nursed her to sleep. She lay in my lap as electrodes were stuck to her head. The technician typed things into a keyboard, which sent sound waves to Lauren’s brain. We could instantly see lines on a monitor which represented Lauren’s brain immediately responding to the various sound waves. This test showed us that Lauren’s hearing was fine.
After this hearing test, Lauren’s ENT told me she would send her report to Lauren’s pediatrician. I asked the doctor if she thought further testing was needed. She said yes. I asked her if she thought Lauren might have autism. She told me that she saw many children like Lauren and autism was definitely a possibility. Lauren’s pediatrician called me when she received the hearing test results. She wanted to have Lauren start speech therapy. I told her that I first wanted a consultation with her, that she might thoroughly observe Lauren. I mentioned some other delays and behaviors that we were seeing in Lauren that I hadn’t mentioned before. The doctor agreed and we met at lunch time one day in her office.
Today, as I look back at that paramount visit with Lauren’s pediatrician, the most bizarre aspect to it is that Craig wasn’t with me. I think that at the time, I thought the doctor would only recommend further testing. I remember thinking that there would probably soon be many appointments Craig would need to attend, so I didn’t want to take him from work any more than necessary. In every other respect, however, I was very prepared. Upon walking into the doctor’s office, I handed her a six page typed report listing all of Lauren’s developmental delays and (as yet) unexplainable behaviors. I tried to create a thorough picture of Lauren so that the doctor would be as successful as possible at discerning her needs. It’s a good thing I brought the report, as the only activities Lauren engaged in during that hour and a half were playing with a doorstop and with the window blinds. (Though these two activities probably spoke volumes to the doctor.)
Before the doctor even finished reading the last page, she piled the pages back together and slowly said to me, “Your daughter has all the classical signs of autism.” She flipped through the papers again to point out some specifically telling descriptions, then mentioned that her behavior in the office was symptomatic as well. At one point, she stopped and pushed a box of Kleenex toward me. “Go ahead and cry,” she said. I think her own emotions about having to give me the news were overwhelming her, as I felt fine. My biggest worry was that I wouldn’t remember word for word everything that the doctor told me so that I could repeat everything accurately to Craig that evening. I kept thinking, “Well, finally we have an answer. All we need is an accurate diagnosis, then we can gather information and do whatever we have to do to help our baby.” My, but how naive I was . . .
To rule out other possible diagnoses, the pediatrician ordered a blood work up and an MRI for Lauren. I remember both experiences vividly, as all parents do when they must submit a child to pain and fear “for her own good.” I remember being told it might be easier if I didn’t stay in the room with her. My response was, “I have a lot of experience holding her down,” which I guess convinced the medical personnel that I wasn’t going to cry, faint or fawn. (I had insisted when Lauren was 11 months old that I would stay and help hold her for tests she needed to rule out any serious cause for her urinary tract infections. So, I wasn’t lying when I said I had experience holding her down. But it is possible to be firm, helpful, reassuring, and to cry all at the same time.)
To put her to sleep for the MRI (as she needed to lie perfectly still in a tube) Lauren was given a sedative through an IV while I held her in my arms. Her arm was taped to a board so that she wouldn’t pull the needle out of her arm when she moved. But each time Lauren started to fall asleep, she pulled her arms up as all babies do, whacked herself in the head with the board and startled awake! Craig finally took over holding her because he had a special way of putting her to sleep while standing and swaying her back and forth in front of him. (The board was beneath her in this position.) The nurses or technicians responsible for sedating her were amazed at how high a dosage was necessary. I will always wonder whether so much sedative in such a small body further harmed Lauren’s brain. The pediatric neurologist who later told us all of Lauren’s test results were normal also told us that he wouldn’t have expected anything else and that, years ago, he stopped ordering these tests on children like Lauren.
The pediatrician sent us to the pediatric neurologist to confirm Lauren’s diagnosis and to give us whatever else his expertise had to offer. This doctor was new to an established pediatric neurologist’s practice. The original doctor in the practice was unavailable for months. We believed the new doctor wouldn’t have been hired if he wasn’t qualified, so we went to this man. He confirmed the diagnosis, but had little else to offer. He was unfamiliar with any local programs or organizations other than the local parent support group network for families with children of any disability. He gave us no information on the variety of existing theories and therapies that were available across America. (The internet wasn’t even in my home yet.) However, Craig and I liked this man. He seemed to sincerely like Lauren, and he gave us the most valuable piece of advice we’ve received from anyone on this journey so far. He said, “From this point forward, there will be a lot of stupid people telling you what you should do for your daughter, including myself! Just remember that you know your child better than anyone else and you are the only ones who know what’s best for her.” This man earned our utmost respect for those lines, which we have remembered in every encounter with a new “expert.”
What Causes Autism?
I hate it when someone asks me this question. The cause of autism hasn’t been determined or declared yet. But now that you know how varied autism can be, you have a basis to understand the difficulty. There are likely many causes of autism. Because autism is simply a description of certain symptoms that qualify as a diagnosis, each of these symptoms could, perhaps, have different causation. Perhaps the autism that affects children who can speak and have no digestive tract problems has a different cause than the autism that affects non-verbal children, or children who are greatly helped with diet changes.
Many parents and professionals have long held the belief that children with autism are born with a predisposition to the disorder. It is then triggered by something in the environment, such as a toxic chemical exposure. In May 2000, a syndicated Los Angeles Times article reported such a medical finding—that research indicates a predisposition to autism is present at birth. “A team from the California Birth Defects Monitoring program examined stored blood samples from 249 infants collected during the 1980s. The researchers found unusually high levels of four proteins associated with brain development in nearly all the samples from children who later were diagnosed with autism or retardation, but in none from infants who developed normally.” This is one of the most exciting pieces of autism research I have ever read. The article went on to say that this finding does not rule out other more immediate causal factors, such as vaccinations. However, it may soon be possible to screen newborns for these proteins and counsel parents of infants with the predisposition. If the medical community begins to take autism prevention seriously, these parents will be cautioned to avoid possible symptom triggers, such as those I mention in the rest of this chapter.
There are many parents whose children’s autism was clearly triggered by the MMR vaccine. Yet Lauren already had symptoms of autism before receiving this vaccine. Lauren did have a severe reaction to her DTP shot. She slept for two days. She hardly woke for the feedings I forced her to take every three hours. It is only within the last two years that there has been much discussion about the DTP as a cause of autism. The mercury preservative that is put into the child’s body along with the immunizations is of a toxic level even to adults. Chelation therapy (which removes heavy metals like mercury from the body) has helped many people with autism. I am looking forward to reading more research and wonder if this may one day help Lauren.
Lauren undeniably has yeast problems, and has improved drastically by our addressing these problems. Even when Lauren was first diagnosed, every professional knew that, for some reason, autism tended to parallel high incidence of ear infections, and subsequently, frequent antibiotic use. (Antibiotics kill all bacteria in the body, even the ones needed to stay healthy, which creates the yeast imbalance in the child’s system.) But there are certainly children out there who have had many ear infections, but no autism.
I know one thing for sure. Lauren was once a perfectly healthy baby with terrific social skills and she slowly changed. I avoid eighteen months worth of photos in my albums. It’s too painful to see so obviously what we didn’t see as it was unnoticeably unfolding. I wonder every now and then if I at some point made a decision that is responsible for Lauren’s autism. I believe I did, but if so, I did it without hesitation. I had studied child development in college and as a new mother. I explicitly followed every piece of advice given to me by my children’s medical doctors. I trusted that, at every moment, I was doing what was best for my children’s physical, mental and emotional health. Whenever someone tells me, “I don’t know anything about autism,” I reply, “I didn’t either, until I had to. There’s absolutely no reason anyone would unless they were somehow affected by it.”
Well, now I am affected by it day-in and day-out, minute to minute. I now think about it and read about it more frequently than I think about or read about anything else. So, of course, I now have some suspicions and some strongly held beliefs about what is responsible for autism. But I also know there is at least one autism “expert” out there who could come up with statistics that would make my suspicions and beliefs sound ridiculous. (It’s amazing what people can do with statistics. Craig and I love hearing reports of new research results, then counting the ways one set of numbers are “interpreted” by various groups. Omitting corroborating evidence in order to downplay results or not discussing the criteria of control groups, for example, are just two ways to make definitive statistics say exactly what you want.)
I’m going to completely avoid the criticism of my “betters” with many letters after their names and remind you that this is a mother’s story. I may not have the authority to suggest what causes autism, but I have the authority to make the best choices I know how to make for my children. I can’t remake some pivotal decisions of Lauren’s past, but I will share with you anyway what I would do differently if I had another opportunity. I have no plans to have another child to prove my sincerity, so you’ll have to decide for yourself if this information has any bearing on your life.
If I were to have another baby, I would do nothing differently than I did last time during my pregnancy with Lauren. OK, maybe I would avoid spraying Pledge on that shelf—the one where most of the Pledge missed the shelf and settled on the linoleum floor beneath the chair I was standing on. When I stepped down, my feet slipped out from underneath me and my behind hit the floor hard. I was five months pregnant at the time, but the doctor said that the baby was well padded and if there wasn’t bleeding, I shouldn’t worry. There wasn’t bleeding, but I would like to have avoided that fall anyway!
If I were to do it all again, I would again breastfeed my babies as long as they would let me (or until I couldn’t stand it anymore, whichever came first).
I would not immunize my babies at all, with any vaccination, until they had an impressive vocabulary and had met every developmental milestone that has a space for a date next to it in the baby book. When I did finally choose to vaccinate for some disease that my pediatrician convinced me was of a significant danger (the lectures can’t be helped—they come with most medical degrees) I would require to know all the ingredients of the vaccine and anything else included in the syringe that goes into the child with the vaccine, such as preservatives. I would not agree to any vaccine with any toxic substance, such as mercury, in its recipe. I would allow only one vaccine to be given at a time—no combinations. (Yes, that is possible. It’s just not standard or most cost effective.) If there are going to be side effects, I like to know what to blame. I’m amazed by moms who worry about combining children’s cough medicine, cold medicine and pain killer, but they allow a combination drug with much more potential danger attached to it to be administered to their children with no questions asked.
I would make sure that my child is as healthy as possible when any vaccine is administered. Yes, that means that I might have to schedule an extra appointment rather than let the doctor vaccinate during a checkup where an ear infection or red throat is discovered. I’m more than willing to be inconvenienced. When I talk to my friends who are trying to decide when to vaccinate, they always say, “But the doctor and the nurses treat me like I’m ignorant and paranoid when I say I’d like to wait. I never know what to say.” I tell them, “Be very sweet and soft spoken and say, ‘I’d be happy to vaccinate Junior today, but I’ll need a signed guarantee from you that if he is ever diagnosed with autism, you’ll pay all his medical, therapy and education fees.’ Most doctors will say, ‘No,’ and you can just agree, saying, ‘OK, then, we’ll do it on my schedule.’ If your child’s doctor has a bold or impulsive personality and no respect for the individual rights of parents to deem what’s right for their children, then you might want to have such a contract typed up and ready to hand him or her.”
If I were to do it all again, I would never give my child antibiotics except under these circumstances:
1. The child has reached all milestones listed in his/her baby book and/or
2. The child has seen a chiropractor specializing in children and has had her spine adjusted on a regular basis, if needed.
3. I have tried all natural remedies for the infection and nothing has worked.
If I did decide to give my child antibiotics, I would also give high doses of a healthy flora supplement while he or she was taking it and for a while afterward. If one round of antibiotics didn’t clear up the infection, I would try every other means possible to rid the infection. I would know that the correlation of a child losing hearing to a popped eardrum is much lower than the correlation of autism symptoms to repeated antibiotic use. I would reassure myself with this knowledge, and with the knowledge that having a hearing impairment would seem like vacation in Aruba compared to having autism like Lauren’s, to both the child and the parents.
I would do my best to serve meat and animal byproducts that are antibiotic and hormone-free. If I’m going to actively avoid inserting antibiotics into my child, I’m not going to passively let him or her get a regular dosage.
I would keep my child away from dairy products as much as possible (meaning that we would definitely still have an occasional Dairy Queen cone or dish of Ben & Jerry’s). As soon as my child experienced repeated sinus infections or ear infections, I would even eliminate the occasional ice cream treat.
I would be aware of all molds and mildews in my child’s environment, then get rid of their sources as soon as possible. I would avoid use of all chemicals in my house which are unnecessary, such as pesticides and cleaning solutions. I would realize that most household chemicals are unnecessary and replaceable by even more effective natural substances.
I would serve my family as few artificial ingredients as possible in their food. If my child began exhibiting bizarre or troubling behavior, I would keep a log of everything he or she has eaten. If I realized any correlation between behavior and food, I would try an elimination diet.
You probably realize by now that some of these things I am doing under the better late than never rule. Lauren has been drastically helped by changes in diet. We’ve also eliminated most chemicals in our home. Lauren had an obvious and immediate reaction to some, so it made sense to eliminate as many as we could. Considering that she puts many items she finds in her mouth, this has frequently provided us a sense of relief.
Of course, there are some days when we fall off the path of best intentions. When money is tight, we sometimes take short cuts; or when Lauren’s begging for something that’s not healthy for her, we might give in and begin to question whether there’s really any harm done by it anyway. But a change in Lauren’s behavior or health consistently puts us right back on track.
So, here it is—a mother’s dissertation. I don’t know for sure what causes autism. I don’t know why some people are susceptible, while others exposed to near duplicate conditions are not. But I know that if I’m traveling on roads reputed to have poisonous snakes cross them, I’m going to plot the most safe and direct route possible, keep my eyes to the road and have a first aid kit handy. This is the best map and first aid kit I know to give you, though I hope we can pack a better one very soon.
What’s Her Prognosis?
People didn’t ask me this question when Lauren was younger. She was quiet and small. Everyone was reassuring, even those with no knowledge of autism or Lauren would reassure me that I was a terrific mother and that Lauren would be fine. As she grew larger, noisier and some of her behaviors became more obvious, people more often asked, “How’s she doing?” and “What’s her prognosis?”
I remember the day I realized that it’s pretty accepted form not to assume anything about our children’s future, as our plans and assumptions can serve to limit them. I also realized that no one asks me what I think Bryn’s future will be like. They certainly never ask me about her prognosis. But if they did, my answer would be the same short answer I now give when they ask about Lauren. I say, “If all goes as expected, she’s definitely going to grow up to be a woman.”
Our family’s experience with school has been diverse and ever-changing. When Lauren was first diagnosed, I went to a parent support group one evening. While there, I informed other attendees that my husband and I had just checked out a preschool program for children with autism at a local prestigious university. Everyone there knew of this program and said, “Oh, if they’ll take you, go, go, go!” A few moms remained quiet at the time. I signed Lauren up the next day and she began attending the following Monday. She attended for eight days.
On Day One, Lauren walked into the classroom, found a corner away from the other children and tucked herself quietly into a fetal position on the floor. Lauren was usually happy and explorative, so this amazed me. This was the first impression had by the teachers, so they did not know that my daughter characteristically acted (at twenty-two months old) more like a normal, albeit quiet, little toddler.
I was new to the world of autism, so my learning had just begun. I met with another therapist, Marian, the first week Lauren was in that program and told her about Lauren’s experience in the classroom. She suggested that we give the program thirteen days. If we didn’t see any improvement in the situation in thirteen days, then we should pull her out. She said any situation that is good for Lauren should look good after giving it about thirteen days. (I’ve used the thirteen-day rule quite a bit since then. I think Marian just pulled the number thirteen out of thin air. I think twelve days or two weeks would be as good a marker, but thirteen has been the number I’ve remembered and used ever since then.) I later found out that this therapist did not approve of many of the theories this preschool program put into practice. However, she was respectful enough of other professionals and of me not to degrade the institution, but to let me see for myself and make my own judgements independently. She gave me articles written by Temple Grandin, an adult with autism, and suggested some other autobiographical works by people with autism. (The preschool program had not provided or recommended any educational material.) I also found out later that a few moms at the support group meeting I attended would never have put their children in the program for reasons similar to Marian’s, but I was just learning.
On Day Two of Lauren’s preschool program, Lauren wandered over to one of the teachers and reached up to him with her arms. I was observing through a two-way mirror and I saw my precious child reach to an adult for the first time! But the teacher was busy with another child, so he turned Lauren around and pushed her in another direction. My child reached a milestone at twenty-two months that most babies do in their first six months and she didn’t receive the natural response (someone picking her up) that would encourage her to continue to reach out to others in this way. From behind the glass, my heart ached that she wasn’t home right then, where Mommy would have realized the significance of this event and celebrated by picking her up, praising her and dancing around the room with her. I wrote the head teacher a long note about this occurrence. I explained that Lauren had never reached for anyone before and how she must be picked up when it happens, to reinforce the behavior. I watched on another day from the window for just a few minutes when I arrived to pick up Lauren. The children had just come inside from playing. One teacher was taking turns with each child, removing his or her shoes and putting on his or her slippers. After getting Lauren’s slippers on her feet, the teacher set her in motion toward the classroom. But Lauren turned around, walked over to him and reached her arms up to him to have him pick her up. (It was her usual nap time, so I knew she wanted comfort in her sleepiness.) The man turned her back around and pushed her toward the classroom again as he had to attend to the shoes and slippers of the next of a dozen children. My baby walked away, having been shown once again that when she (at twenty-two months old) is tired or sad and wants the comfort of an adult’s arms, reaching for that adult to express the need is not the way to get it met!
I was in a state of confusion. I felt that every plan I ever had for mothering my children had been desecrated. My baby was in the car with my husband at 6:30 A.M., despite the fact that she didn’t naturally wake up until about 8:00 A.M. I was trying to feed her when she wasn’t yet hungry so she could get out the door to conquer traffic on the twenty-five mile trek to her school. My three-year-old ate peanut butter and jelly in the car every day as we drove the same twenty-five miles to pick up her sister. It was an hour-and-a-half round trip. Our lives were centered around “school” when I had never had plans to send my children to school. We had already been planning to homeschool at this time, so we certainly had not planned on preschool. But I was new to the world of autism. Having no expertise to fall back on, I deferred to “the experts”—some people who at least had experience with autism.
On the first day of Lauren’s attendance in this program, I knew nothing about the many and varied sensory challenges faced by people with autism. One day, I was so unhappy about the turn our family’s life had taken, and so angry that I was doing what was completely against my mothering instinct, that I was being unbearable to my family. Craig finally ushered me to the door at lunchtime and said, “You’re going out to eat by yourself. Take as much time as you need.” (Isn’t that a terrific way to handle a mother who’s being beastly? I’ll never forget that day and I fall in love with my husband again every time I think of it.) I took the literature Marian had given me and finally sat down, in a public restaurant, to take time to read it. (Any mom can appreciate that having information is good, but having the time to read it is the only way it’s useful!)
I read about Temple Grandin and many of her sensory experiences as a child. Temple described the type of classroom that was useful to her learning and the kind that was chaotic and forced her to “shut down.” I realized that Lauren was shutting down in the classroom because of the overwhelming environment. It was a very large room with skylights, tables, chairs, centers for various activities, large windows and an average of sixteen people in there at any one time. By the second week, Lauren would become very upset when her Dad arrived at the classroom door. She would try to drag him away from it. After reading this material, I didn’t blame my daughter a bit for not wanting to set foot across that threshold. Over the years, Lauren’s particular sensory needs and challenges have become obvious to us and we would never expect her to enter such a situation without a lot of preparation and support. That there was a time when her dad and I weren’t aware of her needs seems like a very distant memory now.
During her second week of school, Lauren still remained in her own little world, except when on the playground (and when at home and most places outside the classroom, of course). She boggled her teachers, who evidently had not encountered children with as challenging sensory needs as Lauren’s. The teachers were trained in behavioral management, but their behavioral techniques couldn’t work on a child who rarely opened her eyes or moved from one spot because the environment was too intimidating. A teacher came to our house for the first home visit and was amazed at Lauren’s sociability in her home. She complimented many of the “strategies” I had implemented (though at the time they were just parenting choices), then told me that the teachers and administrators at the school had brainstormed about Lauren at their last staff meeting. They had all noticed that Lauren was very comfortable, loving and most outgoing while in my arms (surprise, surprise) and they wanted to use this “interest” of hers. The teacher asked me if there was anything that Lauren would associate with Mommy, any perfume that they could spray on a blanket, for example. I didn’t wear perfume, but I asked why. The staff had decided that they would give some “Mommy object” to Lauren whenever she made a positive overture, such as if she moved toward where other children were playing. “Then what would happen?” I asked.
“We would take the Mommy object away after a short time. Then when she did something positive again, we would give it to her again.” This teaching method seemed to make so much sense to this young teacher that I didn’t want to burst her bubble with my many doubts, so I remained quiet. I couldn’t help thinking some reasonable thoughts like, “Wouldn’t taking the wonderful, unconditionally loving relationship in Lauren’s life and making it conditional be more likely to destroy that relationship than to make her do your will?”
On Lauren’s last day at the preschool, we met with the program director and voiced our concerns about Lauren’s sensory needs not being addressed. I told the woman some facts and theories that I had read and how I found them applicable to Lauren. The director told us that she did not share the same theories as the people whose books and articles I had been reading. I found it amusing that she doubted the autobiographical experiences of people with autism, when she doesn’t have autism. In the end, we respectfully agreed to disagree, and Craig and I told her that these were the reasons we were removing Lauren from the program. The ride home with our whole family in the car was one of the most joyful rides we’ve ever taken. I knew by this time that I would never again deny my mother’s instinct or ignore my family’s basic priorities when choosing what is best for Lauren.
When I speak with parents who are looking at various educational settings for their children with autism, I give them one piece of advice: Whatever you imagined your life with this child to look like before he or she was diagnosed, try to stay as close to that as possible. I had volunteered in a daycare center when I was in college and, compared to my experience of toddler daycare, the university preschool program was a very good daycare. Children without autism were also in the classrooms as peer models, so the program would have taken Bryn, too. If I had intended to work and have my children in daycare, this would have met my vision for my family very nicely.
I had not intended to work outside the home while my children were young. Many women would be indignant at the suggestion that their career end because they had a child. Yet I was supposed to accept that my intended career, being a full-time mom, had to end because my child had autism. For a mom with an ideal of working outside the home and having children, this program could keep that dream alive, despite autism. For me, it was an institution keeping me from all my ideals, from my career, from my children.
The reason Lauren was in the preschool for eight days instead of two whole weeks is because she was out sick with conjunctivitis for a day or two. I was very upset when she came down with it as it’s very contagious and the remedy is difficult. When the whole family came down with it, putting drops in Bryn’s and Lauren’s eyes was like wrestling a rhino to take its horn. I took Lauren back to class when she was no longer contagious. You can imagine how angry I was upon seeing another little girl with obvious masses of gook draining out of both eyes. That is another consideration when deciding whether to put your child in a daycare-like setting. Even if you’re a conscientious parent who will keep your child away when sick, not all parents are as conscientious, and your family pays the price. I’ve discovered over the years how very susceptible Lauren is to illness, so I’m especially grateful for the limited-germ benefit of homeschooling.
That’s one of the first things I looked for in Lauren’s later schooling experiences. Teachers and administrators need to respect Lauren’s unique health needs. Sleep is one of her greatest needs. Over the years when Lauren was falling asleep at 3:00 A.M. or waking up at 5:00 A.M. (and sometimes doing both) her school program had to be flexible. After her worst nights, her teachers and therapists needed to give her a place to rest, give her an easy day and understand that this was a symptom of her autism, rather than blaming mom.
Until we solved many of Lauren’s allergy problems, Lauren often had a cold and was usually congested. One of her first speech therapists became quite disgusted by the situation. We had to cancel frequently because we considered Lauren contagious. I knew this didn’t please the therapist, so I was happy one day when we kept her appointment because Lauren just had the sniffles, no full-blown cold. At the end of Lauren’s session, the therapist came out and said with a frown on her face, “You shouldn’t bring her when she has the sniffles. I could get sick. Then I wouldn’t be able to see the rest of my clients!” All I could think was, “You’re the adult. You know not to put the toys in your mouth. Buy some Lysol and use it!” But instead of saying anything, we soon found another therapist who knew not to put the toys in her mouth and whose criteria for contagious were closer to ours. This therapist is still with us, so she’s been a first-hand witness to amazing improvements in Lauren’s health as we’ve tried new approaches.
The distance a family has to travel to a school program is also important. While I felt it was wrong that our family’s days seemed solely dedicated to getting Lauren to and from school, it was leading another family to serious problems. One mom I met at the preschool was driving one and a half hours each way. Her son had autism and was in the program. Her daughter was older than Bryn and was becoming depressed. The little girl typically stayed with friends while her mother did the driving. The mom felt like she never saw her daughter, because, of course, her son’s needs didn’t end when they arrived home. The woman told me her husband and she were having serious problems. She felt the crux of their problems was her own unhappiness about her day-to-day existence. This woman took her son out of the program soon after we removed Lauren, for many of the same reasons. I saw her at a few conferences later and her family was much happier. Life was still difficult, but the family was stronger and happier because mom was home more and better able to meet everyone’s needs, including her own.
Another thing I’ve learned over the years about choosing schooling for Lauren is that if it’s right for her, it will also be affordable. This may sound backward, like it should read: If it’s affordable, it’s right for her. That’s not what I mean. Public school may be affordable for everyone, but that doesn’t mean that it’s right for everyone. However, if a program or treatment will cost money that the family doesn’t have (and in this credit-card-happy society, I think everyone knows how you can pay with money you don’t have) then it’s not right for the child right now. One of the regrets I have about the decisions we’ve made over the years is that we accrued debt to try things that ended up not helping Lauren. I would never judge a person who did the same thing, as I probably wouldn’t regret the expenditure if Lauren had been helped! Also, many people say there is a window of opportunity when children with autism are young. Craig and I like to think that we tried everything we possibly could for Lauren and didn’t miss any window of opportunity. However, I think that if we had been a little more patient and waited on what God wanted for our family, we would have been better directed and spent our money in a wiser fashion. I like to think that is exactly what we do now, not that we’ve just given up hope or are getting cheap in our old age!
People often ask me what has helped Lauren the most. The first and biggest breakthrough in communication came for Lauren after I read the book, Sonrise. I was considering trying the Options Institute methods of therapy. The premise of this therapy is to constantly follow the child’s lead, copying her behavior. While others are trying to break into her world, the child will develop interest in these persistent human beings and break out into their world. Lauren was very much in her own little world all day at this time. The antics of her sister didn’t even interest her at this age—just after her second birthday—the way they had when she was a baby. Her days were spent in activity such as: studying her own hands, studying the fur on her stuffed animals, running her hands through plastic bicycle streamers, scooting backwards in circles on the floor and watching Disney videos.
Lauren loved to go outside into the backyard, where we had a swing set and a toddler jungle gym. But Lauren ignored the swings and toys. Left to her own devices, she ran circles around the entire yard. Sometimes she would run her hand along the fence, the house or a tree as she zoomed past, but she rarely stopped to rest. One day, I watched Lauren as she ran in her circle, then I suddenly stood up and followed. I ran directly behind her and tried to keep up with her, touching the fence, house and trees where she had touched them. Lauren laughed! She kept looking back slightly as she ran and seemed excited that I was there. Finally, (probably after only two or three laps, I’m in such great shape) I sat back down on the two-person swing where I had started out. Lauren finished one more circle, then came over to me at the swing. She looked me in the eye with a huge smile across her face, took me by the arm and dragged me to my feet. When I started running again, she laughed again. I felt I knew what that huge smile meant: “You get it, don’t you?! You finally understand!” I think I only made it around one full circle this time, when I sat down. Lauren immediately came over to me and pulled on my arm again. When I told her Mommy was tired and didn’t budge, she walked behind me and pushed on my back to get me going in the right direction! I couldn’t resist such well communicated instruction, so I dragged myself around another lap and sat again. Despite how thrilled I was with the interaction, I didn’t budge the next time. Bryn was sitting next to me at the moment. After a minute or two of attempts at persuading me, Lauren turned to Bryn, dragged her to her feet, pushed her and they were off! I felt like crying, but the exhaustion from running kept me just watching the two of them, filled with joy at what I had witnessed. Lauren had asked her sister to come play with her for the first time.
The second greatest “breakthrough” moment with Lauren has had to do with music. I don’t remember any specific event which made me realize music was so powerful. There was simply and naturally a gradual building of its uses in Lauren’s therapy and in our lives. I do remember that Lauren’s first phrase was “Rudolph the Red Nosed Reindeer” said in a sing-songy fashion immediately after Burl Ives sang the song in Lauren’s Rudolph video. I also recall one of Lauren’s and my lengthiest verbal interactions. I began to sing the Alphabet song to her, leaving off half of each phrase. Of course she’d heard the song hundreds of times, so when I sang “ABCD” and she quietly responded “EFG”, I shouldn’t have been so surprised. But I was and I kept going, right through to Lauren’s “next time won’t you sing with me” (which sounded more like neh tah woh yuh suh wuh weh” but Mommy knew exactly what she meant!) I sing some beautiful songs with my church band, but this was undoubtedly the most moving singing experience I’ve ever had.
I discuss the power of music in the chapter called Empowerment. I’ve often felt instant comfort with a new teacher or therapist when they’ve asked, “What about music? Does Lauren respond to music?” If they mention it early on in the relationship, they have probably experienced breakthrough moments with children using music. The theory behind music as I see it is (just like the Options Institute theory) “When you can’t get in, drag her out (or intrigue her) with music.” I look for this use of music in any good classroom/therapy situation. If a therapist doesn’t understand how music will help Lauren, then she probably doesn’t understand Lauren.
Families can go to the Options Institute to learn their practices. They offer programs in a retreat style setting in the Northeast. Attendance costs a few thousand dollars, however, so Craig and I never attended. (This was one time we chose not to financially overextend ourselves.) We did read paperwork from the Options Institute and met with other families who had attended. We then set up a version of the program in our home. We put all of Lauren’s toys up high on shelves so she would have to communicate in order to ask for them. We found volunteers through a church bulletin advertisement and taught them the techniques we had learned. They began coming by one at a time for an hour at a time to help us keep Lauren busy as many hours of the day as possible. We were trying to pull her into our world and keep her in our world.
The volunteers who lasted more than a month (I think many thought it would be more like babysitting and a lot less work) became dear family friends. They filled out paperwork so we could keep track of progress. I remember the first time one of the women heard Lauren say the word “swing” clearly. You would think the sky had just rained dimes, she was so excited. I was happy, too, but I think as much from my new friend’s joy at being part of the moment as from Lauren’s accomplishment.
Having volunteers in our home was difficult, particularly as most of the volunteers were people with full-time jobs, so they had to come after work or on weekends. Lauren was often tired by the time people came by, or we wanted to just do family activities when Dad had his weekends off from work. (I’m sure the Options Institute stresses what kind of people and hours to schedule in order to avoid this situation.) We needed to reduce the number of hours, and therefore, the number of people who came by. About one year after starting the program, we only had two people still coming by and our primary therapy hours for Lauren were not volunteer hours.
Even before we had volunteers come into our home, we had been attending therapy with Marian. Marian’s methodology was much like the university preschool Lauren had attended, but she addressed the sensory needs of the individual child. Her classrooms were much smaller. Lauren started out seeing her one-to-one or with Bryn present as a peer model. Marian believed theory was secondary to what worked. She had many years of experience with people with autism and had many approaches up her sleeve. She was a loving therapist, then a terrific consultant as we reduced the number of hours Lauren attended. (Marian’s program was thirty miles away on a route with horrific traffic, so we stayed closer to home as we began meeting Lauren’s needs closer to home.)
Lauren has seen three different speech therapists over the years and four different occupational therapists. Her current speech therapist has been with us for over five years and has many of the same qualities as Marian. She loves my child, she’s not stuck on a theory, but is open-minded to what works specifically for Lauren, and she’s a great consultant. (Good teachers and therapists also tend to be good consultants, as they want to have any progress cross over into the child’s entire life in any setting. They also care about the family’s health and happiness.)
Lauren attended our local public school for five months during what would be her second grade year. I sought a new school setting for her because we had been through a horrible summer and I had lost all creativity and energy. (It was the first summer that we could no longer go to the pool because Lauren can’t tolerate the chemicals. And summers are extremely hot where we live.) Craig and I observed a number of classrooms in some potential settings, but we chose a special ed classroom in the local school she would attend if she were in a regular second grade class. The class was made up mostly of children more physically impaired than Lauren, and one boy with autism, who reminded us a lot of Lauren. We chose it because of the teacher and the environment. Music played often. It was a peaceful classroom where the activities were more along the line of preschool activities. (In the more advanced special ed classes, we pictured Lauren stimming often while other children recited their ABC’s and Math facts.) The best thing about the class, however, was Lauren’s teacher. She knew a great deal about autism, she treated Craig and me like we were the experts on our child, and she genuinely loved and enjoyed the children she taught. (Most of these qualities were not evident in any of the other teachers we observed.)
Lauren left the public school classroom when the teachers kept sending her home early because of her behavior. I wasn’t laughing at the time, but I think back and laugh at the situation: Many people have encouraged me over the years to put Lauren in school as though that’s where she’ll get expert care and help. In school, Lauren had a personal teacher’s aide, and two other teachers were in the classroom, but when they couldn’t handle her behavior, they sent her home. I guess they thought I had magic powers or something.
At the same time that Lauren’s classroom seemed no longer suitable for her, we found out her beloved teacher (who was the reason we chose that classroom) was leaving to move to another state. Had we decided to keep Lauren in school, the school system agreed with us that her current classroom was no longer right for her. Craig and I observed the only other classroom that might be “right” for Lauren. The classroom was a sensory nightmare. There were so many cubicles for various activities, I felt like a rat in a maze, even being tall enough to see that daylight did exist somewhere beyond the final half wall. We also think Hitler would have loved what they called the “time-out” room—I think it used to be an elevator shaft. When we turned on the light, a very loud fan came on and the noise of it bounced off the cinderblock walls, echoing in a fashion that instantly hurt even my not-so-sensitive ears. We suspected Lauren would be spending a great deal of time in time-out, so we decided to keep her home where her time-out room is carpeted and has a soft bed in it. We could have fought the school system to create a more appropriate placement for Lauren, but there was negativity from the start of discussions and I knew from experience that when we’re fighting the outside world, the world inside our home is tense and unhappy. I didn’t know how long such a fight would take, but the promise of its end wasn’t great enough to risk the peace and sanctity of our home and family. I began, once again, to create a homeschool that meets Lauren‘s needs.
There are many things I’ve learned from Lauren’s various educational experiences that have reinforced my belief that she’s usually best off being taught at home. One of these things is that it takes a long time to understand the needs of any one child, as well as to develop a trusting relationship with that child so she’s willing and able to work with you. Two teachers and three therapists who have worked with Lauren possessed this understanding and developed such a relationship. Whenever a teacher or therapist changes, the relationship is all new and must start from scratch. New teachers walking into Lauren’s life need to minimally get a grip on some basic facts, such as that Lauren is an “eloper” (an escape artist). She must constantly have firm boundaries and supervision or there is a real danger of our losing her. She tends not to come when called and has little appreciation for the danger of things like oncoming cars, so this danger must be taken seriously.
I can remember one summer program Lauren attended. (I was helping out by teaching another classroom of older children.) Marian was the director, but it was the first time she was not Lauren’s primary teacher. From my classroom, I heard Lauren’s teacher and one of the older students walking quickly down hallways in opposite directions and calling out, “Lauren! Lauren!” I knew instantly that they had lost my daughter. I thought about the proximity of the street and the train tracks and I ran to join in the search. I found Lauren in a hallway, almost to an outer door. I had put Lauren into this classroom having reservations about this new teacher’s capability to understand and work with my daughter. Maybe those reservations were premature, but it seems she would have to understand and provide for her basic safety before she could progress to an understanding of the way Lauren’s mind operates.
At home, Lauren’s teachers (Mom, Dad and Bryn) are never starting from scratch. We are always working with her from the context of a deep, multi-faceted relationship. Sometimes this may be a bad thing, such as when Lauren knows which buttons to push to get Mom mad so she’ll stop an activity. But once her motivations and ploys are discovered, there are ways around them. We’re building endlessly upon knowledge and successes previously gained. At home, we have a flexible budget (with only Dad needing to approve any expenditure) and a flexible environment. We’ve been known to add cubicle walls, move major appliances and cut holes in doors to make things work. We’ll do anything to meet Lauren’s needs because it’s our lives at stake. Our family can’t be happy when one of our own is unhappy or failing at what she strives to do or be. Lauren’s educational successes and failures are our family’s successes and failures. That’s a daunting prospect (imagine if every school teacher had that burden for every student) but it’s true. That’s why our school will do whatever is possible to help our students be successful.
Another positive aspect of homeschooling Lauren has been that I know what goes on in her day. If anything negative happens during the school day, a non-verbal child can’t come home and tell Mom and Dad about it. It’s a fact of life that non-verbal people are victims of various forms of abuse because they’re the perfect victims—they can’t identify their suspect, or even the crime. There were many days when Lauren got into the car after school and was so upset that I couldn’t settle her down for hours. I don’t believe that anyone has ever intentionally physically hurt my child, but I’ve left a mark on her body from my firm grip a number of times when I was holding her back from hurting others or from running off. It’s one thing when Mom does it, but if a stranger handles her roughly, she would want Mom to know and would have some anger or sadness about it. I’m sure no one has ever intended to verbally abuse her, either. But I have walked into the classroom unannounced and heard teachers speaking about Lauren, in her presence, in a harsh and angry way. Perhaps Lauren doesn’t seem to understand what they’re saying, but her behavior after such an incident suggests that she is very hurt and has no means to express her hurt. Just avoiding such ills is another huge benefit to keeping Lauren’s education in the hands of a small group whose own hearts hurt when Lauren is hurting.
I’m obviously very supportive of homeschooling, but as I said early in this chapter, you should strive to raise your family after the autism diagnosis as closely as possible to the ideal you held before the diagnosis. If you always planned on having your children in public school or in a private religious school, I hope you’ll first see if that will still work. Not all children with an autism diagnosis have as many challenges as Lauren, and I know of some private schools that strive to meet the needs of special needs students as those needs arise. I hope when looking at the value of a program for your child, you’ll take what you know works for your child and compare it to what the program offers. There’s a good chance that if you think the program is missing something in the beginning, that missing thing will become a big problem as time goes on. It might be a good idea to address it from the start.
After years of working with Lauren, I have my own list of qualities I look for in a program. I’ve alluded to some of these already, such as respect for parents and their ideas. I look for a daily form of communication between parent and teacher. A notebook that is sent back and forth, so parents and teacher can write about the child’s accomplishments or difficulties, is one form I’ve found useful when the teacher reads it first thing and writes in it daily. I look for respect for the child’s health needs. Do teachers stress getting the child there on time over letting the child get extra sleep in the morning if she was up all night? Do they respect the parents’ choices regarding the child’s health, such as immunization choices and any chemical or other sensitivities they want avoided? Do they guarantee the child’s special diet requirements will be followed?
I look for affordability and proximity, as I mentioned. If you have to move to have your child attend the program you believe is best for him, great. Just take your whole family and be a whole family in your new location. Don’t let autism break up your family. It’s not what God wants and it’s not what you want. And even more than being in the best educational setting in the world, every child wants his or her family all together in one home.
In my observations of a classroom or therapy setting, I look for a positive environment. Read the chapter called “Positive Environment” and the ones following it to fully understand the qualities of a positive environment: Respect (for the student), Empathy, Empowerment and Laughter. Laughter has been a big part of my relationship with Lauren’s best teachers and therapists. If I can’t laugh with someone who works with Lauren about the wild world of autism and the crazy ways it affects every activity, then I probably am not going to keep him or her around long. People who understand have senses of humor. That’s all there is to it.
I look for as little down time, or stim time, as possible. This might mean there’s a high ratio of teacher to student, or that the child spends a lot of time with therapists who work one-to-one. A high ratio of teacher to student doesn’t mean much if the teachers don’t have a firm understanding of your child and his personal needs. Know who will actually be with your child most of the day. I found that Lauren’s beloved public school teacher was more often out for IEP meetings and other administrative duties than in the classroom. (I wish I could have hired her to work one-to-one with Lauren in my home, as her expertise and enthusiasm weren’t of much use while she was sitting in administrative meetings.)
I also look for some specific educational methods I know work best with Lauren. It may take some observation of the child’s classroom time to ascertain what methods are actually and consistently being used. Backwards chaining is one method that has worked with Lauren very well. In the more common practice of chaining, a skill is taught in its natural sequence. For example, to teach a child to set the table, you would first have her put out all the place mats on the empty table, then have her bring out the plates, etc. To teach a child to set the table using backwards chaining, you would go through all the steps while she watches, then have her do the last step, such as bring out the platter of food, if that’s the last step at your house. (We fill our plates in the kitchen and Lauren will gladly bring out a plate of food, as then she can eat! Using natural motivation is quite helpful!) Backwards chaining is at work when you hear a child say the last word of every phrase in a song before she can sing the whole song. Backwards chaining is helpful to many people with autism who have a hard time processing verbal instruction because they have many cues to help them understand the situation while they’re in the early stages of learning. The visual cue of an almost fully set table is more easily understood than someone pointing to an empty table while requesting that it be set. The purpose and sequence is much easier to grasp when the person has walked through the process a number of times before.
To picture the idea of backwards chaining, I think of myself putting together a bunch of cars to a Brio train, starting with the engine and adding one at a time until I get to the caboose. By the time I’m ready for the caboose, I can hand it to Lauren and say, “Put it on” and she will know exactly how to do that. The next time I build it, I’ll hand her the second to last car and then the caboose. Soon, she’ll have witnessed the process enough to be able to build the whole train when I hand her the engine. People often naturally use this process when teaching a child to stack blocks, asking the child to put the last block on after he has seen that the goal is to put the blocks in a row on top of each other. This simple process can be used in more complicated tasks like toilet training, writing a name or numbers in sequence, or learning a job skill.
Another educational method related to backwards chaining is what I call “Input, Input, Input!” People like my Lauren often don’t perform well when called upon to prove their knowledge or understanding. Lauren doesn’t perform tasks consistently, so it’s hard to gauge her true understanding of a verbal request or her mastery of a skill. The best therapists and teachers, however, maintain their trust in her capability despite her moment-to-moment performance and keep giving her more and more “input.” They give her books to look at and talk about with new topics that they think will intrigue her. They try new themes and repeat old themes that were favorites so that Lauren constantly has information entering her brain, hopefully gaining more and more significance. I equate this with backwards chaining because both are methods based on the foundational belief that the more meaningful information that the child is exposed to, the more likely she’ll be able to put that information to use when she is better able to communicate or to understand context. More simply put: If we never show her anything, why should she talk? She doesn’t have anything to talk about!
If you can’t imagine any other type of educational method, picture this: A teacher says, “We worked on the letter A today, but she still won’t say or point to any words with the letter A in them. So, we’ll be working on that again tomorrow. Oh, and the color of the week is still red for the eighth week in a row because she still hasn’t said or pointed to the word ‘red’.” I call this the “Bore them to death till they do die” method of teaching. I have seen glimpses of this in classrooms I have observed. Sometimes, otherwise good teachers may fall into this rut when they become discouraged and just want some encouragement from the student that something, anything is getting through. Sometimes, just pointing out evidence of the student’s slow but steady progress is enough to get the teacher past the discouragement and on to better ways of teaching. (The teacher in my example may be too far gone, however!)
Once a child is in an educational program, one good way to judge its value and effectiveness is just by looking at the child’s behavior at home. Is she exhausted and moody while at home? Is she joyful, or at least no less joyful than before she began the program? Of course, an initial transition period is to be expected. Consider using the thirteen-day rule if you suspect that the program is having a negative effect on the child’s behavior. If the child’s teacher reports that she is content and successful at school, ask for the teacher’s help in carrying school routines over into the home environment. For example, if there is a period of quiet time with music playing after lunch each day, try to recreate that at home on the weekends and holidays. If the child seems to benefit from lots of physical activity early in the day, try to provide opportunity for similar activity on the mornings of her days off from school. If a child is making color choices by choosing what color plate she wants at lunchtime, buy some colored plates for home. A good teacher will be cooperative and happy that you value your child’s experience at school and want to recreate it at home.
Of course, if you find yourself or your child in a negative school situation that seems beyond repair, remember my rule for negative people: Ditch ‘em! You don’t have time for them. Find other people who are loving and helpful. They’re out there if you look. I’ve met quite a few of them.
Alternative Medicine, Diet and Sleep
When Lauren was first diagnosed, I think I believed that her difficulties would just be something I would have to teach to, as I would a child with dyslexia or some other learning disorder. Even the pediatric neurologist who diagnosed Lauren told us that the best thing we could do to help her was to find a strong educational program for her. She was so docile and quiet back then, I couldn’t have imagined how very wrong the doctor could be, or how very difficult that “prescription” would be to fill. The doctor was excited when, on a return visit with Lauren, we told him how she had been throwing tantrums and running away from us in public. He immediately pulled out his prescription pad and began talking to us about Ritalin. I told him we weren’t interested in drugs. In fact, the same man had told us on a previous visit that, in her tantrums, Lauren was acting more like a typical two-year-old than when she was quiet and in her own little world. So, I was just celebrating the fact that she was coming out of her shell even more! I think it was at this visit that we decided to no longer see the doctor. He agreed that if we didn’t require medical intervention at the time, our money was better spent elsewhere.
The autumn before Lauren turned three, a submission to the local Autism Society of America chapter newsletter passed before my eyes. (I was editor of the newsletter at the time.) It was a notice seeking participants for a study on the effects of chiropractic care on children with autism. Andrew, a student at the local chiropractic college was conducting the study as his thesis. I spoke to Andrew (who was known as Dru) on the phone about publishing the notice and we soon learned a little about each other. When Dru heard Lauren had autism, he encouraged me to have her participate in the study. I doubted that would ever happen, as Lauren had begun fighting us at doctors’ offices. I couldn’t picture her ever sitting still for anyone to manipulate her spine. But Craig and I attended the presentation Dru and his fellow students/researchers put on for the parents whose interest was piqued by the newsletter ad.
We didn’t know much about chiropractic care. Dru explained that this study would specifically address the effects of moving only the atlas. The atlas is the bone at the top of the spine that all of the spinal column nerves pass through to go to the brain. We learned that it’s important for this bone to be aligned properly, as any misalignment puts pressure on some nerves that pass through it. Even slight pressure on these nerves can have an ill effect on the body’s health. I don’t know if Craig and I believed everything that was said at this presentation, but Dru knew what it would take for us to have Lauren participate. He told us three things. First, the pressure that would be put on Lauren’s atlas was very light. (We felt the “click” of the instrument he would use, but on our fingers.) Second, he would do anything necessary to help Lauren be comfortable throughout the study. (We were particularly worried about the x-rays and physical exam required at the beginning of the study.) Lastly, if we wanted to withdraw from the study at any time, we could. We also knew participation was free (free therapy is hard to come by) and the college was close to our house, so there was no great burden on our family to participate. We signed Lauren up. Having just turned three, she was the youngest participant in the study.
There were a number of chiropractic students assigned to the various children participating in the study. Lauren’s chiropractor was Dru, for which I was very grateful, as he is one of the kindest, most gentle-spirited men our family has known. He also had a great sense of humor. (I’ll never forget when Bryn told him my birthday was coming up on Thursday. “She’s going to be 30!” she announced as though it were 100. On Lauren’s Thursday visit, Dru handed me an envelope. Inside was a sympathy card, plainly signed “Dru.” He got away with this only because he was slightly older than me.)
Before Lauren began seeing Dru (December 1994), she was in the pediatrician’s office for sinus infections, ear infections or urinary tract infections every few weeks. She was frequently taking antibiotics. Upon beginning to receive chiropractic care, Lauren’s sick visits to the doctor decreased to two per year. Lauren began interacting more in therapy and school activities. It amazed me how much better Lauren’s day could be when she began it healthy. When the college study ended, Dru gave me the name of a local family chiropractor in private practice. Lauren began seeing Dr. Beth when she was four years old and still sees her on a regular basis. So does the rest of our family, as we’ve each discovered healing for some of our own ailments in her office. Dr. Beth has been one of our greatest assets in Lauren’s healthcare, advising us whenever she hears of anything that might benefit Lauren and our family. Like many of the professionals in Lauren’s life, Dr. Beth has also become a lifelong friend.
During the spring when Lauren was six years old (March 1998), we took her to Dr. Henry, a kinesiologist. Kinesiologists use muscle testing to determine what illness or allergies are weakening the body. I would describe what Dr. Henry did in his office, but Craig loves to tell people that “he danced around wearing a mask and shaking rattles” because “it’s easier to believe!” His diagnosis was that Lauren was allergic to dairy products, molds and mildew and had problems with yeast overgrowth. In fact, these were the problems we suspected in Lauren (but hadn’t told the doctor) so we were quite impressed. (Though, to be fair to the scientific process, I must add that these are common problems for many children with autism. In other words, the doctor could have guessed that these were Lauren’s problems without ever seeing her, based on her diagnosis. Having said that, Craig and I do believe in the validity of his methods.) The doctor also declared that Lauren had digestive difficulties. Lab test results confirmed all of these diagnoses. One of Lauren’s digestive problems was a parasite that thrives in unhealthy intestines.
The foremost consequence of seeing Dr. Henry was the removal of dairy products from our family’s diet. Lauren didn’t drink milk because we already associated milk with ear infections. However, she loved pizza, nachos with melted cheese on top and Mom’s homemade macaroni and cheese. These are things our whole family misses. (We sneak the pizza and nachos from time to time, but macaroni and cheese isn’t something you pull out of the oven if the whole family can’t sit and enjoy it.) I substituted rice milk for all our homemade baked goods recipes and made sure there was never any (visible) ice cream in the freezer to tempt Lauren. The fruit of this deprivation was evident almost immediately. Within one month, Lauren was sleeping all night! Before this, Lauren was often awake at about 3:00 A.M., sometimes sobbing as though in pain. I can’t express enough how important a change this was to our family life. Craig and I finally were able to sleep seven hours straight most nights. Our dispositions (including Lauren’s) were so much happier during the day, probably just because we’d rediscovered R.E.M. sleep!
Because of Lauren’s mold and mildew problems, Craig and I also quickly addressed an obvious moisture problem in our family room. The carpet became saturated when it rained. A drainage problem had rotted parts of the outer wall, so water seeped into the room. Renovations took three months and left us with a much prettier house. More importantly, Lauren was a happier child. This may have been a direct result of the “summer of supplements” we had just completed. Lauren took oral syringes full of juice or water mixed with a variety of supplements throughout the day. Craig and I needed to refer to a spreadsheet that laid out dosages and frequency every time it was “time for Lauren’s medicine”—there were too great a variety of gradations and frequency to keep track otherwise. The effort was worth it. After completing her regimen, Lauren’s digestive tract was healthier—she almost immediately gained weight. A friend who had babysat Lauren as a toddler used to comment on her skinny little arms and legs when she would change her diaper. She saw Lauren that fall and couldn’t believe her eyes. Everyone was amazed by her new pudgy build and the obvious improvement in her health. Other gains were a happier disposition and a new interest in people and activities. For example, Lauren raked leaves and rode a bicycle that fall! Dad assisted hand over hand, of course, but Lauren initiated each activity. She independently picked up the rake and started pulling it; and she surprised us all when she stood the bike up and struggled to get onto it. When help appeared and her efforts were met with success, Lauren’s obvious glee was that of any young child sharing in these activities for the first time. Her joy was contagious. I remember that October like it was a month-long celebration.
Sometime during the following year, Craig and I became aware of another of Lauren’s food intolerances. She consistently became sick after eating soy products. She loved some tofu-filled Chinese dumplings at the time, so it was another sad goodbye to a few favorite foods, but having her not in pain after a meal was certainly worth it.
About a year later (Spring 1999), when Lauren was seven, Dr. Beth gave me an article to read about a boy with autism who was greatly helped by gluten and casein (dairy) being removed from his diet. I knew before receiving this article that removing gluten was something we should try, as many children who respond positively to the removal of casein tend to also respond positively to the removal of gluten. However, as always, I was waiting for the divine prompt—the sign that the time was ripe and that I was ready. I considered the article and the extensive reading I followed it up with to be my divine prompt.
Gluten is something in wheat and other grains that combines with yeast during bread-making and helps the dough to rise. All baked items on regular store shelves have gluten in them because they all have wheat flour in them (or some “enriched” derivative of wheat flour). Many packaged foods that you wouldn’t think have wheat in them do have gluten in them. Believe it or not, when I decided our family was going to go gluten-free, I had been grinding my own wheat and baking all my family’s bread for a year. Freshly ground whole wheat bread was a staple in our diets. So this was quite a big decision and transition for our family, but we did it.
According to the information I had read, gluten may take up to nine months to fully clear out of the body, so I was determined to try this diet for at least a year to be sure we gave it a fair chance. The first week Lauren was off gluten, she improved in so many ways, it’s hard to recount them all. She started throwing and catching a ball for the first time. She started showing interest in books. She was generally calmer and more attentive. She picked up markers and drew with them for the first time. Within a month, she began drinking out of a straw. These are only a few of the changes we saw in her. Needless to say, we decided pretty quickly to stay on the diet past one year. Though there has been no continuing pattern of dramatic changes in Lauren since that first month, we continue to recognize that she is a calmer and happier child than she was before the diet.
(***If interested in more detail, there is an appendix called "Going Gluten-Free" at the end of the physical book, Dancing in Cornmeal: Life with Autism.)
Not long after going gluten-free (in May 1999), we took Lauren to a registered nurse named Milly, who has a business doing BioEnergetic Assessment (BEA). We discovered Milly upon beginning a new educational program with Lauren. At her first evaluation, where the professionals initially set up her program, the evaluator was also a mom of a son with autism. I spoke to her at length about Lauren’s behavior and how it’s directly affected by yeast. At the time, we had Lauren on acidophilus, a pro-biotic, but she still had signs of yeast infection often. This mom gave me the name and number of Milly, who had helped her son overcome his systemic yeast problems.
Milly’s assessment of Lauren was probably the easiest, most pleasant medical experience we’ve ever had with Lauren. Beforehand, I didn’t think Lauren would cooperate with the procedure as Milly described it, but she was reassuring on the phone. In person, Milly’s peaceful demeanor helped Lauren to stay calm in the room and come back to the chair over and over again after small breaks. Lauren consistently picked up the small metal rod she needed to hold for the test, while at the same time allowing Milly to hold and touch her hand in the way necessary. In the end, we had a nice readout of Lauren’s level of tolerance for different substances. These readings confirmed the findings of Dr. Henry, whom we had seen over a year earlier.
By way of a completely different avenue (or so it seemed to us) Milly and Dr. Henry had come to the same conclusions about Lauren’s health. Milly gave us supplements to address Lauren’s yeast difficulties and advised us to keep her away from the other substances to which she had found Lauren sensitive. Most of these substances had already been removed from Lauren’s diet, but now we were even more motivated to be sure her diet and environment were as needed to allow her the greatest chance to thrive. The supplement immediately seemed to help Lauren. We are very pleased with Milly. She is another fountain of knowledge about a variety of alternative healthcare practices.
Interestingly, Milly’s BEA of Lauren showed that Lauren tolerates brown rice very well, but has a low tolerance for white rice. “Why would that be?” I asked Milly. “What’s the difference?”
“White rice is bleached,” she answered. “It’s the chemical residue from the bleaching process that she is sensitive to.” Ahhhh . . . a light bulb went on in my head. Lauren hadn’t been able to go to the pool to swim all year because the water made her sick. She doesn’t just experience skin contact, she also drinks it. Despite Mom and Dad’s attempts to dissuade, she guzzles mouthfuls and always throws up in the car on the way home. After going to the pool just once, her behavior is uncontrollable for two weeks afterward. Craig and I had come to the conclusion that it was the chlorine that was doing this to her, and chlorine is what they use to bleach products, even food products, like rice. More affirmation.
When Lauren was nine (Spring 2001), we were experiencing bout after bout of aggressive behavior from her. She is like a completely different child during such bouts. She can be so loving and gentle at times, and so out of control and angry in an instant. I had another nagging thought. Somewhere in my past I’d heard of the Feingold Diet, which involves removing all artificial flavorings and colorings from the child’s diet. I knew it as a diet that helps many children with hyperactivity and ADD. Certainly my child is often hyper and has a severe attention problem, but I haven’t yet encountered any parents of children with autism who are on the diet. The thought of it kept tugging at the back of my brain. One day, again in the spring (wellspring of new ideas or renewed energy to try old ideas?) I purchased a Living Without magazine at our local health food market. The magazine addresses issues pertinent to people on limited diets, particularly gluten-free diets. Inside this issue was an article written by a mom of a child who had begun the Feingold diet. She described one of the child’s pre-diet tantrums and I sat up straight while reading it; it reminded me so much of a Lauren tantrum. Though this mom’s child was verbal and said some hateful things during his outburst, his verbal expressions seemed perfectly to fit Lauren’s “tone” during a tantrum. I considered it another piece of divine timing (i.e. I was ready, willing and able) so I went to the Feingold web site and soon ordered the materials necessary to start the diet. (Actually, you can start it without the materials, but I’m a little obsessive and require possessing, at my fingertips, answers to every question I might ask before engaging in anything new.) The materials, and subsequent newsletters, provide much encouragement for implementing the diet in a world where most foods readily available and most popular (especially among children) are loaded with artificial ingredients.
For our family, this was the easiest diet restriction we took on. After all, when you’re gluten, casein, soy and yeast-free, you’re already making most items from scratch to meet your needs. Even if you’ve found prepared foods that fit the bill, they’re likely additive-free because they were found at a health food store. We primarily had to take only two condiments out of Lauren’s diet—Heinz ketchup and Log Cabin pancake syrup. But we quickly realized that healthier ketchup tastes just as good as name brand, and that medium amber pure maple syrup even meets the taste requirements of Mom! (I was the Log Cabin lover.) Lauren’s behavior seemed improved, but we did some tests to make sure. There was an obvious and immediate correlation between Lauren’s consumption of artificial ingredients and her lack of self control. No more tests, she’s staying on the Feingold Diet.
One of the greatest breakthroughs in Lauren’s health, disposition and attentiveness can only be attributed to supplements. In late spring of 2001, we began using SuperNuthera, the multivitamin supplement that was formulated specifically for children with autism with proper proportions of B6 and Magnesium. We also began giving Lauren a different pro-biotic than she had been receiving. This is a formula made up of many different strains of bacteria, all of which are necessary for proper digestion. (I didn’t investigate this one. It just happened to be listed on the same order form I used to get the SuperNuthera. I tried it for the purpose of saving me a twenty-six mile drive to get our usual supplement from Milly. What proper parental motivation! But if it worked as well . . . what a time and energy savings.) These supplements are expensive, but we began them because Lauren was, once again, frequently agitated and we were looking for help. The week she began taking these supplements, Lauren frequently played calmly and began “reading” a variety of books often. She was suddenly less interested in sitting in front of TV videos. She became more interactive, silly (like her “old self,” before any aggression had occurred) and communicative. We are so pleased! I’ve heard, “Wow! We have our little girl back!” come out of the mouths of Craig, Bryn and me during completely different interactions. I thank God and I keep praying that He will continue to place Craig’s and my feet on the narrow and unpredictable path toward Lauren’s healing.
As I write this chapter, Lauren’s behavior has continued to be consistently pleasant, she’s been easy to engage and she’s talking much more. The only exception has been when she’s on an antibiotic. Lauren has gotten thrush, a yeast infection of the mouth, each of the two times she’s taken a powder oral antibiotic (which we mix with juice, but the powder residue still sits in the crevices of her mouth). Symptoms of thrush include swollen, broken and painful lips. The first time she experienced it, the symptoms went away immediately upon discontinuing the antibiotic. The second incident was more severe, so I took her to the pediatrician. Lauren’s regular doctor was not in. The doctor we saw said, “It’s not thrush. Only infants and people with compromised immune systems get thrush.” Yes, well, Lauren also had parasites that only people with compromised digestive tracts tend to get. An alternative practitioner found that out for us. How can any doctor tell me my daughter doesn’t have a compromised immune system when he can’t tell me what autism is or what causes it? It seems to me that developing a serious disability of unknown origin while being exposed to the exact conditions as a sister who is unaffected could be evidence of a compromised immune system. My theories about Lauren’s health have been dismissed many times by doctors with “Oh, that only shows up in people with compromised immune systems.” What can be more compromising than something strong enough to eliminate speech and sociability and to cause self-abuse? When I “GRRR” in frustration, Craig kindly reminds me to “Be patient with doctors, honey. Remember, they’re only practicing.”
Though these might not fall under everyone’s definition of alternative medicine or even therapy, I want to include two more success stories here. The first has to do with sleep, so it ties into the success story about Lauren’s sleep improving. While removing dairy from her diet allowed Lauren to sleep through the night, she was still unsuccessful at putting herself to sleep at any regular hour or in any regular way. Craig and I had tried to keep her in her room at night, but we just ended up hating our nights. The time that was supposed to be our time together had one of us fighting Lauren in her room while the other fell asleep on the sofa trying to be quiet. We accomplished nothing in the evenings, spent no enjoyable time together and still none of us got any decent sleep. This problem came up at a program evaluation when Lauren was seven. The evaluator suggested something that many parents had tried with success. He told us to completely block out the light to Lauren’s room. This would give her overactive mind nothing to focus on (or be distracted/agitated by) and would allow her to go to sleep. We couldn’t put curtains or any window covering on Lauren’s window, as she had torn down two sets already. In this case, the suggestion was to spray paint the window black. That weekend, Craig bought a can of navy blue spray paint and painted the outside of Lauren’s bedroom window. During the day, it gave the room a mellow glow with the sunlight behind it. At night, it prevented the light from street lamps, the neighbor’s carport and the moon from shining in. We put a blanket at the base of the door outside the room and the room was pitch black. Craig and I took turns lying down with Lauren and we couldn’t see a thing.
Lauren began falling asleep very quickly after we said our goodnights and lied down with her. She finally had a bedtime! After a few months of Craig’s or my being in the room with her, one night I suggested Bryn go to bed at the same time. (They shared the room at the time, but Bryn was in the habit of going to bed later than Lauren. Bryn regularly woke up Mom or Dad, whoever had fallen asleep with Lauren, upon coming in to go to bed.) Bryn sang lullabies to her sister, who easily fell asleep to the sweet sounds, and a new night-time routine was born! Craig, Bryn and I began taking turns putting Lauren to bed, though, Bryn often asked if she could do it because she enjoyed singing her repertoire of memorized lullabies before falling asleep. One evening, my parents were visiting from out of state and I wanted to visit with them rather than lie down with Lauren at 9:00. We went through our routine of video, using the toilet and brushing her teeth, but this time when Lauren bounded into bed and pulled the covers over her head, I didn’t join her. I said our prayer, kissed her goodnight, told her I would check on her to be sure she was OK, then I left and closed the door behind me. Lauren was asleep in minutes. I did the same thing the next night, and the next, and, once again, a new routine was born. I thought I was being selfish not lying down with her so I could visit with my parents, but perhaps Lauren was glad to finally have her space back.
In our defense, Craig and I stayed with Lauren in order to keep her from getting out of bed to turn on her overhead light full blast. The light had a dimmer switch with a separate toggle to control brightness, but at this point, Lauren had figured out the tiny toggle. Would you believe it took us months to figure something else out . . . she can’t turn the light on if there are no bulbs in the light fixture! Again, in our defense, this would have left her room pretty somber and useless during the day when her window was painted. It was only after we removed the paint from her window (while trying to sell our house) that we resorted to taking the bulbs out. It works! Natural light really does let you know when to sleep and when to wake.
Melatonin is a hormone produced by our bodies that is supposed to tell us it’s time to sleep. Melatonin is also available for purchase as a supplement, which some parents have reported using to help their children with autism finally get some sleep. We tried it once for a few nights and it wasn’t helpful at all. Lauren seemed to become more hyper after taking it and three hours later she might finally be asleep. I have a friend whose daughter was taking melatonin forty-five minutes before bedtime and it was very helpful. I asked my friend, “Does your daughter stay awake because she’s not tired, or is she tired and just fighting sleep with every ounce of strength she can muster?” My friend looked at me as though she didn’t understand the question, so I guessed that she hadn’t experienced what we were experiencing with Lauren. The later it became, the harder she would try to stay awake. Even in front of a favorite, calming video, if Lauren felt her eyelids droop, she would jump up and run around in circles in order to keep awake. I remember observing this and saying to Craig, “It’s as though sleep is this great abyss that she’s afraid of falling into and she’s fighting to stay alive.” I wondered as I was saying this if sleep resembled the state of self-isolation she was more deeply in as a toddler. (We try so hard to keep her with us during the day, and she enjoys us, then we ask her to submit to the feeling at night.) I’ll probably never know.
Sound therapy is another controversial activity many families have undertaken to help their children with autism. Many have shared success stories with me. Some who have paid the cost of the Berard or Tomatis methods have shared their doubts. Having myself experienced many changes in Lauren’s behavior seeming to have no correlation to any therapy, I can understand why parents question what to credit for their children’s improvement or regression. Craig and I have opted not to pursue any formal sound therapy, because no matter how much I read about it, I still don’t comprehend the premise of its success. (I don’t accept, “Just trust us, you’ll see results” as a reason to put Lauren through a therapy.) I do understand that my child has very sensitive hearing and has been intolerant of many noises that most people can assign to the background. It makes sense to me that if I expose my child to the frequencies that frustrate or hurt her in a regular, non-intrusive way, she will likely become desensitized to these frequencies. That’s exactly what we have done and that’s exactly what we believe has happened.
I’ve mentioned playing music often in other chapters of this book, but I want to make clear that Craig and I believe this has been very important to Lauren’s success over the years. For the price of about twenty CD’s that our family enjoys owning and listening to anyway, we have accumulated a method of therapy far cheaper than what any other therapy costs. What I didn’t mention in the other chapters (because it is most recent in Lauren’s “musical history”) is that Lauren now enjoys listening to a variety of music, including the radio, and becomes bored when the style of music remains the same for too long. As a toddler, Lauren tolerated only Bach, Mozart and a few contemporary piano styles. Over the years, we have increased her classical repertoire and introduced blues, rock and country. Today, she loves listening to the unpredictable radio in the car and even at home. She doesn’t even mind most commercials. (Though I mute it when anyone starts screaming an ad at me. Why would I ever give someone my money when they’ve just hurt my eardrums?!) At home, we used to have to play one CD at a time and be aware of when the CD ended and a new one began, as Lauren’s mood could change drastically. Sometimes, she even walked us to the stereo and asked us to change the music. Today, Lauren prefers a variety of artists with somewhat similar styles. We can now put five of our favorite CD’s into the player, set it to play randomly, and enjoy hours of a variety of music as a family. Perhaps Lauren has just matured in her musical tastes as she has aged, but she hasn’t matured as noticeably in many other matters of development. She also doesn’t react violently when children scream, trains go by or loud machines sound. I feel certain that her purposeful exposure to a variety of “sounds of life” has well prepared her brain for the occasional extremes. Now she remains calm when she hears such sounds, instead of reacting like she’s being physically assaulted. That’s worth the price of any therapy.
This chapter is specifically for parents who can’t imagine how they will ever toilet train their son or daughter with autism. I was there once and I wished so much that someone would come along and lead me through the steps. If your child is more inclined than Lauren was to use the toilet, maybe you don’t need this chapter. If not, maybe something in our experience will be of help.
About the time Lauren was turning seven years old, Craig and I decided it was time to toilet train her. Books on the subject advise parents to wait until a child shows signs of readiness, such as an interest in sitting on the toilet or an ability to hold it for a long time. Lauren showed no sign of readiness. She was perfectly content to continue wearing pull-up diapers, possibly for a very long time. But the only pull-up diapers that fit her were very expensive (I figured out that we were paying over $250.00 per month for diapering supplies) and she was outgrowing the largest size they sold anyway. (Since then, a larger size has come out on the market—same price but fewer in the package, of course.)
Important to mention before I go into the process of training are some strategies we implemented to keep our family as happy as possible during the process. First of all, Craig took a week off from work. We knew this would be a full-time effort that would wipe me out if I did it alone. We foresaw the cleaning that would need to be done after accidents while vigilance in Lauren’s care and training would still need to be maintained. I don’t know if we believed one week would be anywhere near enough, but our other plans suggested we weren’t so confident. I wrote a letter to all our local friends to let them know what we were undertaking. (By the end of this book, you’ll realize I’m a big fan of seeking my community of friends’ support. Our family has many loving friends who desire to help. Even though I’m a pretty independent person, I realize that I enjoy meeting others’ needs when I can. The times that I’ve gone to the extreme of asking for help, I’ve felt the push come from outside of myself. The love of these people is substantial. It draws me to reach out for it and to touch it rather than allow myself to be overcome by life’s challenges. Lauren has allowed me to know the love of friendship the way it’s portrayed in the movies—when you walk out of the theater crying.)
I knew we would have to stay close to home throughout the training process, as there was no way Lauren could be trained using public restrooms. The only place Lauren went at the time was to her speech and occupational therapy sessions. I asked our friends for three favors with the letter that follows:
This Wednesday is Lauren’s 7th birthday, and to “mark” the occasion, Nannette and Craig are forcing Lauren to toilet train. (Actually, the fact that she has outgrown the largest size disposable pants available in stores is also a factor in the timing.) This means there will be no more disposable pants in the house and Mom, Dad or someone will have to be continuously at Lauren’s side to take her to the bathroom (on a schedule and as needed), to guide her through the steps, and to clean up any accidents.
Why am I telling you this? Well, over the years, many close friends have realized how challenging life with Lauren can be and have asked how they could help. Typically, we just say, “Pray for Lauren, please—specifically, that she talks.” Though prayer is still our number one need—specifically that Lauren accepts and learns this toileting thing quickly—we will also be challenged by the simplest everyday tasks for awhile. So, we can think of some very tangible ways that we would love some help.
We will be pretty much homebound until Lauren shows some mastery of toileting. It may take 3 days; it may take many months. (Pray for 3 days!) During this time, it will be extremely difficult to run basic errands. So those who can, I ask that if you are headed to the grocery store, and you’ll be seeing one of us soon or have time to drop off some groceries, please call us and ask if we need anything. (We’ll try to keep our grocery money in cash so we can pay you right back.) Also, please think of us if you are headed to any of our other basic errand places: Target, CVS, Petsmart or post office, for example. (If you call us just as we’ve run out of toothpaste or light bulbs, you will be a saint in our book!)
Also, if you or your family is headed out somewhere fun and it wouldn’t be a bother to have another kid aboard, please consider calling and inviting Bryn to join you. (Even if it’s just the mall. She hasn’t been to one in 2 years.) We won’t be able to take her anywhere for awhile and I’m sure she’ll be thrilled at every opportunity to escape our preoccupied household.
I know some of our friends won’t be able to help in these ways, so remember that our first request is for prayer. We love you, and thank you for all the caring ways you’ve been in our lives over the last few years. And thank you in advance for whatever way you’re able to help.
We’ll let you know when everyone’s using the potty successfully and we’re out and about again!
Nannette & Craig
(I put our phone number here.)
The most important part of this letter to me was the opportunity it would hopefully present for Bryn to get away. I didn’t want this period of her life (if it turned out to be lengthy) to leave her with legitimate reason to complain about her childhood. There was no fear of that when all was said and done. Bryn was invited to: the mall; an open house at the new local Major League Baseball stadium; a Renaissance festival; and to friends’ houses to play often. She has very little memory of Lauren’s toilet training.
The outer preparations having been made, we decided on a toilet training strategy. Just like Bryn did when she was toilet training as a toddler, we knew Lauren had to be bare-bottomed during the process, as underwear feel too much like diapers. But Bryn wore dresses while training. Lauren had been refusing to wear dresses for over a year. As soon as I pulled one over her head, she fought to pull it back off. (My theory is that she realized Mom dressed her in pants and shorts when staying at home, but put her in a dress whenever we were going someplace “special,” such as yet another doctor’s office. I didn’t blame her for avoiding that trap!) Pants and shorts were out, as they provide a thickness like a diaper. I didn’t want her to run around naked, so I knew a reintroduction to dresses was the first battle.
This battle was actually the shortest in any we have ever undergone with Lauren. I went to the store and bought the most comfortable pullover all cotton dresses I could find. After Lauren’s bath on Day One, I lovingly and happily talked about the beautiful dress she was going to wear that day. I pulled it over her head and she almost immediately began struggling to pull it off. I lost the sing-songy voice, pulled the dress back down firmly and said in a loud and stern voice, “Leave the dress on!” Lauren left the dress on and began wearing dresses more than any other type of garment from that day forward. I know . . . this is not a technique in any parenting books. If it were, it would probably be called “Compliance by means of fear that Mommy’s head will begin to spin.” I have never used this method with any success on any day following this incident, so I can’t recommend it, but it worked this time. (Thank you, God! I had nothing else up my sleeve.)
Beyond her remaining bare-bottomed, the plan was to take Lauren to the bathroom frequently on a schedule and to be vigilant for any sign that she needed to go, so that we could “catch her” when she had the urge. This is pretty much the way you train a typical child, but most children I know won’t let the urine spew onto the hardwood floor with seemingly no sense of this being a problem. (Most will at least hide.) Lauren’s version of hiding was to sit on someone’s lap, as though she wanted to give them a big hug, then to “make herself more comfortable.” Needless to say, this “natural” form of toilet-training took a turn onto a more forced route pretty quickly. It had to; Craig had taken a week off from work for this adventure. We didn’t realize until we were a few days into it that we had been overly confident. We believed we’d see some sign of understanding within the week that the bathroom was the direction to head in when the urge struck, but there was no such understanding apparent.
Early in the week, we began taking books into the bathroom and trying to have Lauren spend long periods of time in there, so we were closer to the toilet when it was needed. For ourselves, there was a little box-shaped chair to sit on across from the toilet in the tiny bathroom. When Lauren did sit on the toilet, she could hold onto us or lay her head in our laps. We would rub her back to help her get comfortable, but she would consistently pop up when she felt finished with the activity, as though to say, “That was a pleasant time, let’s go do something else now.” Don’t get me wrong. She peed in the bathroom. She peed in the bathtub, she peed on our laps and she peed onto towels, but she wouldn’t pee into the toilet.
We showed Lauren books for children about using the toilet. Of course, she rarely looked directly at the pictures in them. To try to get her to remember the proper place to put her pee, I came up with a song/poem that I said to her frequently when I thought she might soon be “forgetful”:
We hold our pee pee in our body
Till we’re sitting on the potty.
When this seemed to help her keep her legs crossed at a later point in training, I added:
We hold our poopy in our body
Till we’re sitting on the potty.
On the Saturday before Craig went back to work, I was turning into a mean person. I guess I wasn’t overtly obnoxious, though, as Craig simply complimented me on being so “determined” when I tried the only thing left I knew to do. I took Lauren into the bathroom with a cup of water and some favorite books. (Her favorites were books with shiny surfaces and textures she could stim on, but I thought the end justified the means this time.) Then I had her sit on the toilet until she used it. Sounds so simple, doesn’t it? It took almost two hours before she peed the first time. In that time, she and I looked at books relatively calmly for about one-third of the time. I held her firmly (with every ounce of strength) while she screamed and fought to get up (with every ounce of strength) about one-third of the time. And I just kept my hands on her ready for the next battle about one-third of the time. I spoke to her lovingly and as calmly as possible throughout. Even when she was justifiably angry, I talked to her about what I needed her to do, how I knew it was hard and how I was not letting her up until she did it.
When I finally heard a steady stream of liquid hitting the toilet water, I was in a state of disbelief. Craig experienced the same surreal feeling the first time he heard it. We each couldn’t have been more moved if Bach himself (my favorite) had left his grave for a few minutes to play us a concerto on an ancient harpsichord. The sound of a child being successful years beyond the time most children experience such success—it’s music to the ears, even when it’s about a basic bodily function.
Upon leaving the bathroom, I announced Lauren’s success to the rest of the family. (The trick with any accomplishment is to be excited without frightening her with our excitement. We wouldn’t want her to avoid the toilet in order to avoid our overwhelming cheers and praises. We’re pretty practiced around here in praising no louder than a regular speaking tone.) At last, Craig was able to unveil our final coup. He had bought helium balloons and a helium tank to use at home. As he praised Lauren for her success, Craig blew up a balloon. Lauren’s eyes were wide and she was shaking with excitement as he handed her her favorite toy. (Daddy must have seemed like a hero to her. Never before had she found this toy outside special places away from home.) We called both grandmas to brag, which we hoped held significance to Lauren despite the fact that she never spoke on the phone or wanted it near her ear. We hoped the reason behind the celebration was understood.
I’m pretty sure the reason was understood, as we had to go right back into the bathroom—even before Lauren was ready to let go of the balloon. This time, it took forty-five minutes of holding Lauren on the toilet before she went again. The party was as big when we came out of the bathroom this time. We were making obvious progress. In fact, the next time I took her into the bathroom, Lauren immediately peed in the potty. From that point forward, she understood the purpose of the toilet. In three hours, we had accomplished through a forced teaching process what I had foreseen taking weeks or months. Chalk one up to a mom getting discouraged and taking the bull by the horns (or the child by the arms) and not letting go.
The biggest problem during Lauren’s toilet training was that she had no idea what to do with a bowel movement. In the first week of being bare-bottomed, she didn’t seem to know what to do with that urge, so she held it in. She held it in for days. We would find smears of feces on the floor, blankets and pieces of furniture. When it did finally come out, it was not into the toilet. After she learned to pee in the toilet, we knew the next battle was the bowel movement. Lauren could hold it for days, but Craig, Bryn and I began to recognize the “poopy dance.” She would hang onto a chair or table, bend at the waist, twist her body and cross her legs. As soon as one of us would see this, Craig or I would take her into the bathroom to hold her on the toilet until something came out or until the urge had definitely subsided. (After a few hours, someone has to give in.) About a month after starting this process, Lauren put her first bowel movement into the toilet. It was another cause for celebration. We had saved helium and balloons for the occasion. She had a few accidents after this incident, but she pretty consistently used the toilet for its intended purpose from that point on. (Well, there was the occasional fishing-for-toys expedition, but she mostly used it for what it was intended.)
I must admit to one miscalculation we experienced right at the start of toilet training. We had cockily vowed we would never have disposable panties in the house again. Lauren would have to forego wearing a panty at night because we believed that if we allowed her to wet in a panty any part of the day, she would be more confused about the process. The first night, we had her out of her bed about three times so we could change sheets. Lauren had a very hard time going to sleep at the time, so it was a miserable night. The second night was similar. I broached the compromise with Craig the next day. He said, “I’m so relieved you said it. I was thinking we’d never get any sleep if we didn’t give in.” We began concentrating on training Lauren during the day and decided to night-train her after we had success during the day.
To this day, we’re still working on night-training. Lauren is refusing to wear the pull-up diaper at night, so we have our natural push to night-train. But she’s also now going to bed on her own and sleeping peacefully through the night. It would have been difficult (perhaps impossible) to night-train when she was such a bad sleeper. Each time Lauren wakes up dry and the bed is dry, it feels like we’ve reached a little milestone. Other milestones that we anticipated nervously, then celebrated, included the first time Lauren wore underwear after being trained. When I put them on her and she left them on, I wondered if she would go back to wetting herself. When she didn’t, we rejoiced. The process seemed complete. Then winter came and we had to reintroduce pants. Perhaps the process never ends.
The first place Lauren used the bathroom somewhere other than her home was at her speech therapist’s house. The first public bathroom was in our local grocery store. The first long distance car ride, when she held it until we were in a filthy rest area bathroom then “went” along with the rest of us—that was exciting.
My oh my, Lauren does give us many simple reasons to celebrate!