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Overcoming AutismA Parent's Guide
By Lori Sullivan
AuthorHouseCopyright © 2009 Lori Sullivan
All right reserved.
Chapter OneDevin's Story
It all started sixteen years ago when my son, Devin, was born in early 1993. Here was this absolutely beautiful, nine-pound baby boy, but right from the beginning, he was different. In the hospital, the nurse brought him to me in the middle of the night, handed him to me in disgust, and said, "Here. You take him. I can't do anything with this one." And so it began.
As an Infant
As an infant, Devin startled easily, shrieked often, and hated noise, light, and being held. He would actually try to use his head to get out of my arms. He preferred to be in his little seat in a quiet corner. It was difficult to take him anywhere. He was slow to achieve all the regular milestones. He had chronic ear infections and was on antibiotics most of the time. He had terrible skin rashes and eczema, as well as allergies and asthma.
As a Toddler
Devin wasn't a great eater and was a very poor sleeper. Tags in his shirt were painful to him. Getting his hair and nails cut seemed to be agony for him. On the flip side, he could fall down a flight of stairs and not even bat an eye. He absolutely could not tolerate anything itchy. He didn't speak or point to things. He didn't mimic or play pat-a-cake or peek-a-boo. He couldn't claphis hands. He didn't seem to hear or was so able to tune everything out that he was in his own world. He would just look at me like I was speaking some alien language to him. He had huge trouble with transitions, and let's face it-everything he did all day long involved transition, from changing his diaper to changing his clothes to switching from play time to mealtime or time to go somewhere, time for dinner or bath or bed, and so on and so on.
Change Was the Enemy
Then there were seasonal changes and time changes, too. Outgrowing his clothes was tough-especially his shoes. I used to buy four or five different sizes of the same shoe so he wouldn't flip out. And he always tripped for days in new shoes! He didn't handle even the slightest change in his routine well at all. He hated TV and the radio, the vacuum, and flushing toilets. He was totally inappropriate at kids' birthday parties and other social events. I became a prisoner in my own home.
His Brother's Point of View
Devin's older brother Andrew, who was four years old at the time, asked me how we got Devin. I told him that I prayed to God to send me another little boy and he sent me Devin. Andrew thought about this for a minute, then he asked, "If we pray to God again, will he take him back?" Smart kid!
The Pediatrician's Point of View
Meanwhile, I tried unsuccessfully to convince Devin's pediatrician that something was wrong, but he just said, "He's just an active two-year-old boy-go home and have a glass of wine and relax." It wasn't until Devin was four and not speaking that I took him to a new pediatrician, who finally sent him for an evaluation. At the time, I didn't realize that as the parent of a preschool child, I could refer him for evaluation myself.
The Evaluation Process
The evaluation process was difficult for Devin and everyone else involved. He threw a chair at the audiologist; screamed "Shut up!" to children singing "Happy Birthday" during the educational evaluation; refused to face the speech therapist because he HAD to sit perpendicular to the table (she had to sit across the table from him to get him to face her); and during a large part of his psychological evaluation, he refused to come out from under the table. Did I mention that you need a huge amount of patience and a really good sense of humor to raise an autistic child?
You Will Need Thick Skin
You also need thick skin so you don't care what other people say or think. Someone recently asked me what I thought about the comments made by Michael Savage (the talk show host) about autistic kids being spoiled brats, and so on (I won't repeat it all, because it doesn't bear repeating). I just told the woman who asked me that everyone is entitled to his or her opinion, and that my opinion is that he's wrong. But I wasn't about to waste time or energy getting angry. What that man has to say is unimportant to me, and at the end of the day, it just serves to bring the autistic cause to the forefront. As Voltaire said, "I disagree with what you say, but I'll defend to the death your right to say it!" This is America, right?
Anyway, the results of the evaluation were that Devin had a two-year developmental delay and an IQ in the 80s. I decided not to get upset about the IQ number and thought that it was great news about the developmental delay. I thought to myself, "At least he's not autistic." Little did I know that the developmental delay is just a catch-all kind of term for when they don't quite know where to place the child on the spectrum. (And I was right not to get upset about the IQ number. Years later when he was tested again, his IQ was found to be in the 120s-and his verbal comprehension and reasoning was in the 130s.)
At that point, I had to give up all hope of working. First of all, Devin needed me-I was determined to help him catch up from the two-year delay. And secondly, nobody would watch Devin for me-he was impossible. I didn't have immediate family around to help take him to all his therapies and interventions. So I "decided" to stay home and work with him. I was drafted into the battle against autism and have served in the trenches for sixteen years. I've had my share of ups and downs, and bumps and bruises, along the way. I've suffered setbacks and triumphed with breakthroughs. There's been laughter and tears. At times, I've been battle-weary and bleary-eyed, but I trudged on. I believe (like most mothers do) in the philosophy, "No defeat. No surrender." It wasn't an option.
Back to Devin: He had huge sensory issues (he was uncomfortable in his own skin). Halloween was a real "treat" at my house. I tried a few times to desensitize him to his costume so he could go trick-or-treating when he was little. He was absolutely miserable. It was way too much sensory input for him, and he wasn't that big a fan of candy. When he was older, he told me what he thought about Halloween. He said, "Why would I want to walk around in the dark in an itchy, uncomfortable, stupid costume to get candy I don't even like, when I can ask you to go to the store and just buy me a bag of the one candy I like-Reese's peanut butter cups, of course." Also, between the costume, the trick-or-treat bag, and the jack-o-lantern flashlight that I got him to use, the poor kid just looked at me and couldn't even walk. There was no way he could process all three things at once-this is a kid who literally couldn't walk and chew bubble gum. I know this for a fact, because his occupational therapist (OT) had to teach him how to do it.
Occupational Therapy for Sensory Integration
The OT I took him to was licensed for sensory integration (SI: more in chapter 5). I learned so much about his disability from his OT. It's really true that therapy does begin with understanding. When I understood the problem, I was able to be more patient and proactive in helping him overcome it. I started dry brushing him to desensitize him. Dry brushing is a form of therapy you do with a very special brush on your child's arms, legs and back under the direction of your child's OT. There's a certain technique for doing it and it's important you have a licensed OT show you how. Devin's OT helped me understand that the reason Devin would slam into people or walls was because he craved deep impact, and she gave me more appropriate things he could do to get it.
Destruction Was His Middle Name
When Devin was a baby in his walker, he used to treat his walker like a bumper car and crash into everything and anything. In fact, his nicknames were "Crash" and "Destructo." Devin broke everything-windows, doors, walls, chairs, ceilings, and all my Christmas ornaments. One day, my husband asked me what I thought Devin thought about (as Devin was break-dancing on the glass coffee table and swinging from the chandelier); without hesitation, I answered, "Destruction-on a planetary scale."
I also found out from Devin's OT that the reason he would spin endlessly was because it was calming. And the reason he was always falling down stairs was because his left and right side didn't work together-he had integration problems. (More about integration in chapter 5.) It's amazing how difficult life is for a child with transition and integration issues-and how difficult it is for the family as well.
Behavior Modification to the Rescue
At the same time, I was working with a child psychologist to modify Devin's more difficult behaviors. (More about behavior modification in chapter 5.) There, I learned that expectation is the first step on the road to disappointment. So I quickly threw my expectations out the window. I also learned that "Autism is a marathon, not a sprint." You have to pace yourself.
Pick Your Battles
I learned to pick my battles so that my family's whole life wasn't a constant battle zone. I really took to heart the Serenity Prayer: "May God grant me the serenity to accept the things I cannot change; the courage to change the things that I can change; and the wisdom to know the difference." I also realized that the dinner table was sacred. We called it the Neutral Zone because we're into "Star Trek." So the dinner table was the Neutral Zone, where we sat and had dinner every night as a family. There was no fighting, criticizing, lecturing, or complaining at the dinner table. It was a social time, when we gathered as a family and made small talk about our day. I strictly enforce the Neutral Zone edict to this day, and we still have dinner as a family most nights, even though my three children are all teenagers now. I believe this is because our dinner table is a safe, comfortable, "happy" place.
Thank God for Integrative Medicine
I also started taking Devin to a naturopath when he was four or five to build up his immune system and get him off the antibiotic-go-round. I found out that he suffered from candida (yeast) overgrowth from overuse of antibiotics. He also had a clogged colon, which overworked his liver, which is the organ that takes all the toxins out of the body. A clogged colon can cause allergies and eczema-both of which Devin had. He still sees his naturopath, who has become a good friend and who helped Devin and our whole family more than words can say.
Auditory Integration Therapy
The next step in the journey was Auditory Integration Training (AIT). Devin had numerous hearing tests. It was discovered that he wasn't hard of hearing-more like he was hard of listening. But then I took him to an audiologist who understood autism and found that certain tones were just supersonic for Devin-off the charts. She recommended Auditory Integration Training to help desensitize his hearing. The results of the Auditory Integration Training proved to me that Devin's brain was wired differently, and his senses were all mixed up. (More in chapter 5.)
I became a volunteer parent advocate for the special education committee in my school district. I did this partly as a learning experience. It helped me get to know the ins and outs of the special education process. It also helped me find out the programs available to children with special needs, as well as helped me to desensitize myself to these meetings, which can be a bit scary and intimidating-after all, it's your child they're talking about.
I sat in many meetings and was surprised to hear the same scenario play out over and over again. The children seemed to have a cluster of symptoms like asthma, allergies, acid reflux, and eczema. Most of them were on the antibiotic-go-round. Most of the mothers couldn't work a full-time job; most of the marriages were in trouble. Most of the wives were struggling on their own (like me), while their husbands were in denial.
Special Needs Kids Put a Strain on Marriages
Special needs kids put a huge strain on a marriage. A lot of marriages don't survive it. In fact, special needs kids put a strain on the whole family. It was about this time (twelve years ago) that I first started researching the environmental-immune dysfunction connection to autism. I wish I could have sat down and written this book twelve years ago, but at the time, I was overwhelmed with the more pressing problem of managing a very challenging autistic four-year-old as well as his seven-year-old brother. And twelve years ago, parents of autistic kids were at the forefront of the battle with school districts-a lot has changed in the past twelve years.
The summer after Devin was diagnosed, at four years old, he went to a speech therapist. The combination of speech therapy and occupational therapy for sensory integration was the key that somehow unlocked the door to Devin's language. He suddenly started talking in sentences and had an impressive vocabulary. He just lacked the integration to put the words together and to speak the words that he knew. His first sentence came out of nowhere. He said, "Look, Mom, an optygon," as he pointed to a stop sign. I almost had to pull over because the tears were blinding me.
That summer, I talked to him constantly, pointing to things and naming them. I bought him educational software for the computer, and he learned the alphabet that summer. He's a visual learner who loves computers; finally, a way to reach him and teach him. Amazing! Computers are a medium many autistic children can relate to.
Special Pre-K and Special Ed. Kindergarten
Devin went to a special pre-K and special education kindergarten. He had huge sensory and social issues that impeded his progress. But slowly, he did make progress. I spent months teaching him to say "yes" or "no" to questions. I also spent months teaching him every expression I could think of, like "fish out of water," and what they meant, because he was so concrete and literal.
I remember having to tell him to get on the bus the first day of kindergarten or the police would take him away in order to get him to go to school. I also asked him at the bus stop what he thought some of the rules in his new classroom would be, to take his mind off being nervous. "No smoking," he said. Those funny moments, even though few and far between in the beginning, were what gave me the strength and the will to keep going. Incidentally, Devin took a class last summer at a local college (he's sixteen years old now). He came home and said that he'd been right back when he was five years old: "No smoking" is one of the rules in the classroom.
First and Second Grades
Devin did catch up with his delay by first grade and was doing so well that I made the huge mistake of letting special education declassify and mainstream him. He did okay for first and second grade, mostly because he "looped" for the two years with a wonderful teacher who was gifted with patience, flexibility, and creativity, and who celebrated Devin's uniqueness. (Her name was Bonnie Koop, she's retired now, and in case I didn't thank her enough back then, I thank her now). The right teacher or clinician can make all the difference between a good year and a nightmare.
Third and Fourth Grades
Devin struggled after that; the academic work and the social skills required in third and fourth grade started taking a toll on him, and basically, he was working without a net. He still had huge sensory issues that sometimes made it hard for him to sit in the classroom and learn.
The Fourth Grade Field Trip
He went on a fourth grade science field trip to study insects and flora and fauna. We were all in the library prior to the trip, discussing it-teachers, students, and parents. The teacher asked if anyone had any questions, and I panicked when Devin's hand shot up. He said, "Actually, I have two questions. Can I bring my fly swatter, and can I leave after lunch?" Looking back now, it's quite funny, but nobody thought so at the time. Have you noticed that since Columbine and all this "zero tolerance" that people don't seem to have a sense of humor anymore?
Excerpted from Overcoming Autism by Lori Sullivan Copyright © 2009 by Lori Sullivan. Excerpted by permission.
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