ENTERING THE WORLD OF AUTISM - BRIAN'S STORY

by Carolyn Lewis


     We moved from my hometown of Salt Lake City, Utah to Billings, Montana nearly four years ago with the dream of spending more quality time together in the great outdoors. Although I looked forward to leaving the crowded city for wide-open spaces with cleaner air, I wasn't excited about moving away from my parents, siblings and friends. Preparing for the move was a challenge as exhaustion had set in from caring for our son, Brian. He was only four months old when we moved and had already proven to be extremely difficult to care for.

     Brian was different starting the first week of his life. I was ill and remember how he began to imitate my coughs and sneezes to get attention, instead of crying. At first I thought it was funny and cute, but after awhile I realized it wasn't normal. He would scream if I didn't respond to him immediately. Feeding him was also very difficult. It had to be perfectly quiet and still before he would eat - even if he appeared to be starving! He would become irritated and refuse to eat if the ceiling fan was on, if someone walked past him while he was feeding, or if the temperature of his bottle varied a bit. While feeding, he had to be constantly pushing his feet against the furniture or anything else within reach.

     Brian didn't consistently sleep through the night for the first two years of his life. He would wake up screaming almost hourly through the night. He would get himself stuck in the corner of his crib with his head against the bars, and he didn't have the ability to move himself into a more comfortable position. He would allow me to pull him into the center of the crib and cover him with his blanket, and he wouldn't fuss as long as I only touched his feet in the process. He would wake up screaming every time he heard an airplane or a train (from several miles away), and he couldn't seem to calm himself afterward. It was exhausting with no sleep, having little idea what he wanted, and feeling like he didn't even notice what I did for him. Brian also suffered from multiple ear infections, acid reflux and food intolerances. At 22 months Brian received his second set of ear tubes because of repeated ear infections. He also had his tonsils and adenoids removed because they were chronically infected, and they had contributed to sleep apnea and poor health. It was just two days after Brian's tonsils and adenoids were removed that he slept through the night for the first time.

     Brian's health continued to deteriorate even though I had followed recommendations from his pediatrician as well as several other physicians. My husband, Allen is also a pediatrician and had had examined Brian regularly. Allen has always been more comfortable having me take our children to another pediatrician. It wasn't uncommon for me to get a second or third opinion when our children were ill. Many doctors examined Brian the first two years of life, as I was certain something was wrong that had yet to be identified. Brian's physical symptoms were passed off as a viral infection or a bug that he "must have picked up at his daycare". Yet, I found it difficult to believe that a runny nose lasting the first two years of life along with multiple ear infections and inflamed tonsils was not a serious concern to the doctors. Brian clearly did not look or feel well, and not one of the doctors that I trusted could help him - including my husband!

     In addition to Brian's physical symptoms, Allen had suspected autistic features by the time Brian was 13 months of age. When he mentioned the possibility of autism to me (when Brian was 20 months old), I became very defensive. I had seen autistic children on TV who rocked for hours while being totally oblivious to the world around them, and they were unable to communicate with others. Brian didn't care to be held, didn't care for interaction with others, and only wanted to be left alone to watch movies. However, it was just too hard to believe that our son could be autistic. When I look back at his behavior knowing what I know now, I realize he had some of the classic autistic features. He would stare at movies from his crib for hours a day, happy to be left alone in his own world. He would scream if anyone tried to pick him up or even say his name. Transitions were extremely difficult for him. I couldn't take him with me to run errands or to do anything else. Brian just wanted to be left alone watching TV in his room.      Brian's sister, Rachael, who is 3 years older, used to feel bad about his rejecting her. She has always had a connection to him and an understanding of him that is quite amazing. By herself she found a way to interact with Brian that finally broke down his resistance. We played "imaginary circus" in our living room, and I would announce all of the acts before Rachael performed them. Rachael began doing a silly clown walk that got Brian's attention and seemed to make him look at her more often when I would announce, "Ladies and Gentlemen!" One day, Rachael placed Brian on the floor and before he knew what was going on, she did her silly clown walk, tripped over him, and fell to the floor. Brian giggled for the first time ever, and he didn't stop for several minutes! He liked this game so much that he began to lie down on the floor to initiate the game. This was the beginning of Rachael's unique ability to interact and play with her brother. A day doesn't go by without my husband or me thanking the Lord for her gifts of love and understanding. Rachael continues to be an awesome playmate for Brian.

     Brian was developmentally delayed, and the delay became more obvious as he approached 15 months of age. He didn't crawl, walk, or even babble. He had difficulty sitting up and would only rarely roll over. His temperament was the most difficult thing to deal with on a daily basis. Brian would tantrum for hours at a time and would resist most attempts to comfort him. We could not figure out what he wanted. He would lie on the floor kicking and screaming, and we had to leave him alone until he calmed down.

     Brian started receiving services from Early Childhood Intervention (ECI) to assist Brian with occupational therapy and speech therapy around 15 months of age. He continued receiving the maximum hours of speech and occupational therapy until the ECI cut-off age of three. We realized the Brian was not making the progress in therapy that we had hoped for. In fact, it was difficult for the therapists to help Brian at all because he would tantrum most of the time they worked with him. At 22 months we took Brian to a child neurologist for an evaluation. The neurologist gave Brian the diagnoses of Pervasive Developmental Disorder (PDD), which we were told was mild autism. The formal diagnosis of autism was confirmed just before his second birthday. As one might imagine, Brian's diagnosis rocked our world. I was terrified to face the reality of Brian's autism. The words "mild" and "high-functioning" stuck in my head and offered hope that Brian could grow out of his autism. It was two weeks after his PDD diagnosis, while I was in a state of denial and shock, that I met another mother with an autistic son. We met coincidentally while selling raffle tickets for a fundraiser. We spent most of our two-hour shift discussing autism, and she stressed the importance of intensive early intervention for Brian's best outcome. The next day she brought three books on autism to our house. That was the beginning of an incredible and unbelievable journey … into the world of autism.

     The research began in earnest with me giving Allen daily briefings about everything I had read about the various treatments for autism. After combining information we'd gleaned from several books, the Internet, and conversations with parents and professionals, we decided Applied Behavior Analysis (ABA) offered the only proven chance to see Brian recover. Our ABA program is based on the methodology developed by Dr. O. Ivar Lovaas. He showed in a study published in 1987 that nearly 50% of autistic children who had undergone this intervention were able to complete the first grade in a normal classroom while less than 5% did so with less intensive therapy. ABA is no small undertaking, as 40 hours per week of ABA is recommended for the best outcome, with the need to continue therapy for 18 to 36 months. Yet families across the nation are spending up to $50,000 a year for this 50% chance of succeeding in having their children mainstreamed in regular schools. The earlier the age this program is started, the greater the chance for the best outcome. As this program is not funded in Montana as it is in some other states, we hired an out-of-state company to teach us how to train, hire, and maintain a therapy staff and keep us on course to Brian's recovery.

     In the middle of hiring therapists, preparing a therapy room, and purchasing all of the required therapy essentials, I came across Karyn Serrousi's book, Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery. Karyn's book was a huge eye-opener for me because she was the first person to clearly explain the connection between autism and physical symptoms of illness. She addressed the possibility of food allergies and intolerances in autistic children. Karyn introduced the gluten-free casein-free diet in her book, and she explained why it is helpful for many children with autism. Brian began the gluten-free/casein-free (GFCF) diet cold turkey just three weeks before his ABA therapy began. My husband had not yet had a chance to read information about the GFCF diet at that point, but he agreed that it was worth a try if I was up for it. In one week Brian showed good response to the diet with unquestionably increased eye contact. During car rides, he no longer stared blankly. Instead, his eyes began darting around as if he could see for the first time. He also said his first three-word phrase, "I got more," after I handed him a rice cracker. Brian's health improved quite dramatically with the diet. His nose quit running for the first time in his life, and the constant flow of ear drainage stopped. The dark circles under his eyes began to disappear. But the most wonderful change of all was the reduction and virtual elimination of his constant tantrums. Hours of tantrums per day were reduced to minutes per day by the second and third weeks on the GFCF diet.

     But GFCF alone was not enough for Brian. Corn and soy triggered his tantrums too, so we eliminated those foods as well. We also realized the importance of nutritional supplements, including essential fatty acids (found in cod liver oil, borage oil, and evening primrose oil) as well as probiotics (beneficial bacteria for the gut). It was extremely difficult to give supplements to Brian in the beginning. Even if we could get them down him he would often throw them up several minutes later on the carpet or furniture. Our house and our clothing smelled like a fish market for a few months because of the cod liver oil. Brian has always been a picky eater and has preferred and almost exclusively eaten beige or brown foods and only certain textures. This was another reason giving supplements was such a challenge.

     Brian tested allergic to several other foods including eggs, all citrus fruits, and tomatoes. He could not tolerate nitrates in meat and would become ill shortly after eating a portion of a single hot dog. His reaction to nitrates is different from his other reactions to food. Nitrates cause Brian to have bloodshot eyes and reduced physical energy overall. He clearly didn't feel well for up to four days after eating meat with nitrates. Brian has not had bloodshot eyes since we removed nitrates from his diet, and his energy level is normal. We challenged the nitrate/bloodshot eye theory several times, and nitrates certainly were the reason for his adverse reaction - no other food or environmental factors had changed.

     Now, after nearly two years of experience with dietary intervention and administering nutritional supplements, we have success with nutrition! Feeling better means performing better in therapy and doing better in all other aspects of his life. Brian clearly feels better than he did before. He looks healthier, and he is growing at a steady pace. Some may question the validity of the GFCF diet. All it takes is a challenge of offending foods to prove its necessity. Brian has had a few incidents where he ate something containing gluten and/or casein. Brian's reactions are noticed between 20 minutes to three hours after eating an offending food. He once shouted "no!" and "don't!" shortly after eating a few bites of food containing gluten, and then his tantrum began. Brian's face and ears turn red after eating gluten or casein containing foods, and full-blown tantrums that may last for hours often coincide with these incidents. There was one incident last year where Brian grabbed his head and screamed "ouch!" over and over while kicking and screaming on the floor for three hours. Dietary intervention has proven to be very important for Brian, and we will continue to watch him closely around food until he understands that certain foods make him ill.

     Brian's ABA program began August 1, 2001. This was the day that our program director from Utah came to our home to train our staff of therapists how to teach Brian through the method of Applied Behavior Analysis. I'll never forget that weekend because he cried and had tantrums for much of the three-day workshop. I was drained by the end of the third day. The only thing that kept me from breaking down was the hope that this program would pull our son out of the world of autism. His first task was to sit quietly on a chair for approximately five seconds. As he didn't want to do this, all of his crying and tantrums were in protest. Actually, this was a lot to ask of him, but it was the key to getting him into a teachable setting. He pointed for the first time during the workshop. He extended his arm and pointed to me for help, but I was instructed not to respond, and this just added to my despair in seeing him so upset.

     Now Brian looks forward to each session of therapy, and he even hand-leads the therapist to the therapy room. Brian has mastered many programs in therapy, and he really enjoys the praise the therapists give him when he succeeds. He has learned many new words that he uses appropriately in sentences. Brian has generalized much of what he has learned in therapy. He identifies and names many objects away from home, and he spells words on books, signs and on the sides of trucks. I am constantly amazed at his ever-growing knowledge of the world around him. Fifty percent of his time in therapy is play, and he gets much reward from success and the interaction with his therapists. Some have criticized ABA because they believe it "kills the spirit." I believed in the beginning, and still believe now, that without ABA we may never have known Brian's spirit.

     Brian's daily schedule is full, and I am much more homebound than before ABA started. We schedule six hours of therapy a day seven days a week in our home. We plan two three-hour shifts of therapy each day. We allow time for naps, meals, and playtime between sessions. It is not always perfectly regimented, and I use the times when therapists can't make it to spend time in new adventures with Brian and Rachael. ECI provided several hours of occupational therapy and speech therapy per week. In total, Brian has had weekly visits from up to 10 different people. All of his therapists and his former daycare providers are very much contributors to his continued progress, and we are very thankful for their commitment and care of him. We are looking forward to Brian attending preschool this fall (he will be four-years-old).

     Allen and I have become fascinated with our new knowledge of nutritional health and intervention in autism. With attention to our own diet, our family is much healthier. With the future ahead, we will need good health. I started a support group for parents with children who have special dietary needs last year, and it has been a great way to connect and share with others. In the beginning, this was a small group of parents with children in the autistic spectrum, but it is now open to parents who have nutritional concerns for their children, whether these children are well or have allergies, ADD/ADHD, asthma, celiac disease, or other problems. I now hear from new people every week who are interested in joining the support group. I have reviewed over 20 cookbooks created for those with allergies and for those who wish to implement a whole-foods diet. I am very excited about sharing the power of good nutrition and have been reading as much as I can each day from our new home library on nutrition and health. Our family is now eating free-range meat and organic fruits and vegetables, and we avoid food additives and dyes. We make an effort to avoid refined sugar and use alternative sweeteners sparingly. Brian and Rachael are cavity free!

     Brian now says, "I love you mama!" He is a very affectionate little boy. He has shown so much improvement that it hard to believe how difficult he was. Brian plays with his sister every day now and, like a typical three-year-old sibling, finds ways to tease her. He also seeks out and plays with other kids. In fact, Brian recently noticed a little girl who was crying and offered her his own blanket for comfort as he patted her on the back. Clearly, this is something that he wasn't capable of doing or perceiving before his various interventions. We can easily take him out in the world, and Brian enjoys going just about anywhere now. He used to freak out in stores. Brian now enjoys shopping and will lead me to places he wants to explore. He also comments on what he sees, and he is beginning to ask questions. Travel used to be extremely difficult. After an overnight trip when Brian was two, we thought we would never be able to travel again. Brian screamed when he saw the pattern on the hotel carpet and wouldn't even set foot on it. The braided rug at the restaurant set off a tantrum that ruined our dinner out. Sleep in a new room, in a new bed, and a new place didn't happen. We recently had a fantastic vacation in Salt Lake City. Brian adjusted more easily to new situations, his sensory integration overloads were gone, and we could relax for the first time on vacation since Brian was born. Brian enjoyed playing with his cousins, and he referred to my parents as "grandma" and "grandpa". He also let the hairdresser cut his hair in preparation for the trip! I am amazed at the progress that he has made in a relatively short period of time.

     Brian now behaves much like a typical three-year-old. His eye contact and his facial expressions are normal. He plays with other children and toys appropriately. There are a few social quirks that need to be worked out, but I believe the preschool environment and playing with typical children more often will address those issues. Brian was never a typical child. He has a lot of learning to do in order to become indistinguishable among his peers. He has come so far in the short period of intervention that many of us who see him and work with him cannot help but comment on how many ways he has improved. Brian is a loving, affectionate, playful little boy who prefers to interact with others instead of watching TV. Brian has acquired many skills including pretend play, and he is a practical joker. He is speaking in sentences and will request what he wants with the appropriate words. He points to and comments on things. He has mastered many programs in his ABA therapy. He likes animals and can make many animal sounds. Brian especially loves trains, cars, and airplanes. He also enjoys frequent trips to the pet store, and he plays with the neighbor's Boston terrier. Brian is no longer a stranger in our house, and he gives love back to us in so many ways. Brian is a miracle beyond belief to those of us who knew where he used to be. We have many people to thank for his progress.

NUTRITION MATTERS!

     It is wonderful to see Brian looking healthier each day. His health isn't perfect, as we continue to strive to truly heal his gut through proper nutrition, supplements, and a diet of the most nutritious foods Brian will eat. I focus on preparing whole foods prepared from scratch. Brian's diet, as well as the diet for our entire family is free of additives and dyes with limited sweeteners. Feeding Brian used to be a challenge, but now he enjoys eating.

     After much research into diet and nutrition, I strongly believe that autistic children need much more than just a gluten-free and casein-free diet. They need a diet rich in fresh fruit and vegetables, fresh meat free of nitrates, cage-free and omega-rich eggs, nuts, seeds, and limited starches and grains (if they aren't allergic). Preparing whole foods from scratch has been the most beneficial factor in optimal health for our entire family. Dietary intervention is absolutely critical to break the cycle of poor health in autistic children, despite the difficulty in its implementation for such restricted and picky appetites. Although nutritional supplements are also very important, they cannot replace nutritious food. I recommend finding a nutritionist who is well versed in nutrition and really knows the healing power of good, wholesome food.

     Physicians are generally not trained to find the underlying reason for an illness, and they typically receive limited training in nutrition. That may be part of the reason why it was so difficult for me to find what Brian really needed to become well. I was actually shocked to learn that my own husband - a pediatrician - did not receive extensive training in nutrition in medical school. A standard appointment with a pediatrician may be ten to fifteen minutes long, and this is not enough time to discuss possible food allergies, gastrointestinal abnormalities, or any other problems that might need to be addressed with the doctor. I recommend that parents schedule more time to work through these issues with an informed doctor. My husband now spends at least an hour with parents of autistic children because of their many needs. Physicians are also not trained to teach parents what they need to do to have well children. Parents must educate themselves about nutrition! Then, together with their nutritionists and informed physician, they can truly find the best approach to help their child become well.

     It gives me great joy to share experiences with the other parents from the dietary support group I started one year ago. In many cases, the health of the entire family has benefited from dietary intervention. The information I share at my support group meetings is being incorporated into a website: www.DietarySupport.com. It is my hope that parents everywhere can benefit from the valuable information I have found. In addition to meeting Brian's needs, I have been motivated by other parents to learn more about nutrition. I am very grateful to them for their support and for sharing their success stories with me.

     It is truly amazing that our wonderful son in his state of autism has brought about so many positive life changes to our household and our community. It is my hope that others will realize similar blessings. I've always believed that miracles are a result of hard work, and now I know it is true. Brian is our miracle, and he will continue to amaze us all.

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