Max's Story
Max was our first baby and was delivered "naturally" after an uneventful pregnancy, without any drugs or interventions because we felt that was the healthiest, safest option. He was big (9 lbs. 4 oz.), beautiful and very healthy. Max met most of the milestones listed in the development charts right on time for the first six months, except for rolling over, and he was only a little late with that. We were told this was a common occurrence because of the "Back to Sleep" program to reduce the incidence of SIDS--babies are more likely to roll over earlier when they're placed on their stomachs. Max was an "easy" baby, very happy and content. We thought it unusual that he loved to sit on his Grandpa's lap and watch documentary-type shows on PBS or Sesame Street videos for hours on end, but a friend who was a school teacher for many years told us that other children who had exhibited similar tendencies had turned out to be extremely bright.
Max loved routines. When he was 3 months old, I returned to work and my mother and sister kept him during the day. Every morning when we would drop him off at my sister's house, he would expect the same routine--to be handed to Grandma, look up at the foyer light (grandma would tap it so that it would swing slightly), look around the room at certain objects, in the same order each time. Seeing that everything was the same seemed to calm him. He didn't point to things or reach for toys very often, but he was so engaging and happy that we just assumed he was just born with a very "mellow" personality.
Max didn't attempt to crawl until he was 10 months old, but we were told that was within the range of normal development. We weren't too worried because he was obviously strong and could pull up on furniture easily. When he began walking at 11 months, we were proud of him, but we were worried about his lack of speech. He didn't seem to babble and make as many noises as other babies--he had always been exceptionally quiet and when we went to restaurants, people remarked that we were lucky to have such an "easy" baby. Just about the time he began walking, he did begin to approximate a few words and to exhibit a little "jargoning," and we felt relieved. We assumed that he was just taking his time, as he had done with crawling. We had also noted that between the ages of 7 and 11 months, his development seemed to slow down, but since he was so happy, healthy, strong and alert, we hoped there wasn't anything wrong.
Max's health was extremely good. He did have recurring thrush (a yeast infection) while breastfeeding, but it seemed to go away after he began taking bottles. He also had eczema, but it was mild. At 10 months old, he had croup and was given an antibiotic, but he wasn't sick again until almost exactly a year later, when he came down with croup again (accompanied by another round of antibiotics). He threw up once for no apparent reason during his second year but never actually got sick, then had croup again shortly before his third birthday (with a third round of antibiotics). That was it for illnesses until he was 5 years old. To this day, Max has never had an ear infection.
At the age of 15 months, we began to get really worried because the few words he had developed disappeared and finally he stopped making sounds altogether. Then by the age of 18 months, he had started making strange, squealing, high-pitched repetitive vowel sounds--"eeee, eeee, eeee, aye, aye, aye." We also realized that he was rarely responding to his name and acted as if he were deaf (although he would come running when he heard the television click on or the sound of a favorite musical toy in another room). He would watch the same "Sesame Street" videos over and over again, dump toys on the floor and line/stack toys up endlessly. He became more and more "distant" and seemed to be in a world of his own. We had been asking our pediatrician about these issues for several months and were told that "every baby is different, and boys often develop speech more slowly than girls." Then one night when Max was 18 months old, I called our family practice office and spoke to one of the doctors. I was really beginning to panic because my gut instinct was that something was seriously wrong. This doctor finally asked, "Does Max have ANY receptive language at all? Does he know who Mommy is or can he go get a toy when you ask him for it?" I said, "NO, that's why I keep asking what's wrong with him!" The doctor agreed that this was abnormal for an 18 month-old and sent us to Children's Memorial Hospital in Chicago to see a diagnostic specialist. It took a few months to get in to see him. He had us take Max for hearing, speech and occupational therapy evaluations. We weren't offered any diagnosis but were told to begin speech therapy immediately and to consider occupational therapy in the near future because Max's delays in those areas were significant (at 22 months of age, his expressive and receptive language both measured at approx. a 6-9 month level--in other words, he had a few non-verbal ways of expressing needs and wants, but nothing verbal). We were also told to make an appointment with a neurologist.
We began weekly sessions with a speech therapist and, a couple of months later, an occupational therapist. The sessions were frustrating for Max and difficult for us to watch because they seemed pointless. Max treated the therapists as if they were furniture and ignored them. He sought out the dried beans, rice, sand and gravel that were kept in plastic containers in the occupational therapy rooms and would sit for as long as we would let him, lifting handfuls of the stuff up in the air and letting it sift through his fingers, watching the tiny pieces fall. It seemed to calm him and make him happy, but then he would scream and tantrum if we closed the containers or tried to get him to play with something else. Speech therapy was especially frustrating as it was so obviously useless, but we didn't know what else to do so we continued to take him.
It took us almost six months to get an appointment with a pediatric neurologist. During that time we had an MRI done, along with some blood work. No abnormalities were found, although we didn't know exactly what they were looking for. When we finally saw the neurologist, he told us that Max probably suffered from "oral apraxia" and that we should continue with the speech and OT and come back for a re-evaluation in six months. We looked up the definition of that diagnosis and felt that it didn't fit Max at all.
About that time, we switched speech therapists because we felt that we weren't seeing any progress. Our new therapist recommended another pediatric neurologist that other parents she had worked with had recommended highly. We had to wait another 5 months to get an appointment with him. By this time, I had done a lot of research on the Internet and had grilled our various therapists as to disorders which might match Max's symptoms, and had come to the conclusion that Max was autistic. When we finally had our appointment with the second neurologist, I told him so as soon as we walked in the room. He did some simple evaluations and noted that Max had no imitative, play or social skills and no receptive or expressive language; that he ignored people, toe-walked and finger-flicked (a self-stimulatory or "stim" behavior); and that he didn't use gestures, had almost no eye contact and exhibited no joint-attention. The neurologist quickly agreed with me and said that he felt comfortable giving an autism diagnosis since I had already realized that Max was autistic. Hmmm, did that mean that he wouldn't have given Max that diagnosis if I was still in the dark about autism? Did he feel (as other doctors seemed to) that since autism was such a hopeless diagnosis, I should be spared the knowledge as long as possible? I don't know. Two months later, we celebrated Max's third birthday.
During the year between Max's second and third birthdays, we enrolled him in our local First Steps program and he attended two different developmental playgroups for a total of four days each week. He was curious and loved to explore the rooms and examine the toys, but never played appropriately with them or paid any attention to the teachers or other children. He hated "circle time," and had to be held (often screaming or crying and occasionally biting) on someone's lap or he would run away. He loved to dump any box that was left unguarded and still preferred to sit alone with a box of beans or sand, sifting it through his fingers, watching the pieces fall. I was pregnant with our second child at that time, and felt very afraid of the future. I didn't feel that anything we were doing was really helping Max (in fact, in many ways he seemed to be getting worse, not better), but I continued to take him to speech therapy, occupational therapy and playgroups because I didn't know what else to do. Max also went through a long phase for quite some time before and after his third birthday during which he would fall to the ground screaming and crying whenever we would attempt to exit a building (ANY building), or would suddenly run blindly away from us, so he always had to be carried to the car. This made our daily excursions very difficult.
Just after his third birthday, we began to teach him to communicate using the Picture Exchange Communication System. Within a few days of beginning this program, he was able to request a few simple items and within a couple of months he began to verbalize (in a strange, almost musical fashion) along with the pictures he presented us with. While we did gain some vocal language with the use of PECS, I feel it's important to note that he did have some words prior to this but he never used them communicatively (we would occasionally hear him say names of animals quietly to himself). Unfortunately, it was difficult to increase his communicative abilities beyond simple requests with PECS because the system was used incorrectly and inconsistently in the various settings in which he spent his time (i.e. school, speech therapy, occupational therapy). We felt that there had to be a better answer. Then I read "Let Me Hear Your Voice," by Catherine Maurice. NOTE: PROFOUND MOMENT!
By the time I was halfway through the book, I knew that we had to start an intensive, in-home ABA (Applied Behavior Analysis) program as soon as possible. I didn't know how we would do it, but I knew that we would. To make a very long story short, we decided to move to Wisconsin in order to receive services through the Wisconsin Early Autism Project (WEAP), a replication site of the work of Dr. O. Ivar Lovaas (based on the UCLA Young Autism Project). I moved to Wisconsin with our children and my husband stayed in Indiana and continued to work in Chicago while looking for a job in Wisconsin. We were fortunate to be assigned a wonderful Senior Therapist who was incredibly talented, creative and dedicated, and I believe that she was the main reason that Max made so much progress. After ten months of intensive therapy (primarily discrete-trial teaching, at a small table, using no-no-prompting), Max had made significant progress in the areas of motor and verbal imitation, play skills and academics, but his language skills still lagged and some of his behavior problems were increasing. My husband had finally received an acceptable job offer and we were in the process of putting our house in Indiana up for sale when our Senior Therapist told us about a newer form of ABA therapy called "Verbal Behavior" and a workshop which was going to be presented by Drs. Vincent Carbone and Patrick McGreevy. It sounded interesting, so I decided to attend. NOTE: ANOTHER PROFOUND MOMENT!
After the first day of the two-day workshop, I knew that we had to begin using VB methodology if we were ever going to get "normal" speech from Max. We began incorporating some VB-type drills into our Lovaas program and had immediate success with them. Over the next two months, several significant changes occurred which made it obvious to us that staying in Wisconsin was no longer the best choice for Max or for us, so we moved back to Indiana (my husband hadn't changed jobs yet), hoping that we would be able to continue Max's program there. We also began pursuing dietary changes and biomedical treatments at this time, on the recommendation of some other Wisconsin parents whose children were making phenomenal progress (and also with the encouragement of our wonderful Senior Therapist from WEAP). NOTE: FINAL PROFOUND MOMENT!
I actually "stumbled upon" one dietary change while we were still living in Wisconsin, which motivated us to pursue other dietary issues. During the second half of the year that we lived in Wisconsin, Max was still learning a lot in his ABA program, but his behavior had deteriorated significantly. We tried behaviorally-based methods of dealing with the problems, but his behavior only worsened. Finally, I realized that in order to find "reinforcers" for Max's therapists to use to bring him to the therapy table, we had come to rely heavily on "treats," such as pieces of sugar-sweetened cereal, juice boxes and mini M&M's candies, but before moving to Wisconsin Max's diet had been almost totally free of refined sugar (he didn't even know what candy was). So I decided to remove as much sugar as possible from his diet to see if it was causing him to be "hyper." As a result of this change, his behavior improved significantly in a short amount of time, so I decided to look further into the dietary changes I had heard other parents talk about.
The first thing we tried, after I had spent months researching dietary interventions, was to remove casein (the protein found in all dairy products) from Max's diet. Within 5 days, he was effortlessly potty-trained (something we had been unable to achieve in many months of trying--he was just over four years old at this time), he became willing to eat things like homemade chicken stew (unbelievable!), and his gross motor skills suddenly improved. We went to Sears one weekend to have him try out a bicycle, but he couldn't grasp the idea of putting his feet on the pedals and pushing, and he just wasn't interested. Then, two weeks later (after a week on the casein-free diet), we tried it again and he was immediately able to push the pedals correctly--and he enjoyed it! It was as if his senses were suddenly working the way they were intended to.
Then, several months later, we removed gluten (the protein found in wheat, oats, barley, rye, and a few other grains) from his diet. We didn't notice any immediate changes, but after about 3-4 months, we started noticing things that had changed very gradually but were now significantly better (less tantrums, more language and eye contact, more social-relatedness, and more "normal" behavior in general). During that time, we began working with a doctor who specializes in treating children with autism (he also has a son with autism). He ordered a battery of tests for Max (blood, urine and stool) and we found that Max had many problems that needed to be addressed. We began treating him for an intestinal yeast overgrowth and some vitamin/mineral deficiencies (he had always taken a multivitamin from the time we stopped giving him formula, but apparently wasn't absorbing nutrients properly). We also found that Max had many unrecognized food allergies and that he showed many signs of mercury toxicity (he had received four diphtheria/tetanus immunizations which contained thimerosal, a preservative that contains mercury, and he had also been exposed to mercury in-utero due to my amalgam dental fillings and dental work I had done while I was pregnant and breastfeeding).
We had one frightening dietary slip-up that convinced us of the necessity of the GFCF (gluten-free, casein-free) diet for Max. After Max had been GFCF for well over a year, we inadvertently gave him whole-wheat (containing gluten) toaster waffles instead of wheat-free toaster waffles and didn't realize the mistake until long after he had finished them (I purchased the wrong item at the health food store because the packages were almost identical). Several hours after eating the waffles, Max began behaving strangely. First he started to cry and laugh hysterically for no apparent reason. Shortly after that, he began pacing, rocking, rolling on the floor and ranting about bizarre things (e.g. "What if our house gets blown up" and "What if you go away and I can never find you"). Then, a couple of hours later, he became hysterical and asked me to "stop the bad voices, the bad sounds." He said "My ears are bad. They hear bad sounds. You have to go to the kitchen and get a knife to cut off my ears because they're bad." We were so frightened and didn't know what to do--it was like watching someone on a really bad drug trip. We were unable to calm him down until well after midnight. Finally he became exhausted and fell asleep. The next day, he was groggy, moody and distant and had terrible diarrhea (green and foamy). Then gradually, over a period of about 72+ hours, he came out of the fog and was back to his "old" self. We knew that the diet had brought about many positive changes in Max, but this proved to us that many of the behaviors that we had always considered to be just part of Max's autism were really caused by foods his body was somehow unable to properly digest and assimilate.
We have continued working with the same "autism doc" for the past 2 1/2 years, and Max is improving all the time. We're still treating him for mercury toxicity, attempting to regulate his immune system and to find ways to alleviate his many allergies. Max is no longer diagnosable as autistic. He has excellent, age-appropriate language skills, he is a beginning reader and is doing age-appropriate academics. Rather than fight with the public schools to provide an education geared towards his unique needs, we have chosen to educate him at home at this time, and he is enjoying it and progressing beautifully. He loves to play with other children, especially other boys (he has a little sister, so he tires of playing "girl stuff" at home). He loves robots, dinosaurs, video games, tag and hide-and-seek. He spends so much time drawing that we have a hard time providing him with enough paper. His language is sometimes "odd," but it is improving constantly (we continue to use VB methods informally to help him "clean-up" the remaining problems). I wouldn't say that Max is "recovered," but if he continues to make the kind of progress that he has made during the past two years, we believe that he will eventually be able to live independently and have a happy and fulfilled life.
I want to share one last story about Max in order to encourage other parents to keep searching for ways to help their children, even if at times it seems useless or hopeless. When Max was almost four years old and still had very little language and many difficult behaviors, we were living in an apartment in Wisconsin that had a ceramic tile kitchen floor. I had placed a glass baking dish on the kitchen counter to dry, and when I wasn't watching him, Max went into the kitchen and pulled it from the counter. The dish fell to the floor and shattered. I ran into the room and found Max standing in a pile of broken glass with a confused look on his face. There were a few tiny dots of blood on his legs where pieces of the dish had nicked his skin. I carried him out of the room, put bandaids on the tiny cuts, cleaned up the mess and eventually forgot about it, although at the time, I was really puzzled and wondered why he had pulled the dish down when he had never before shown any curiosity about things in the kitchen.
Then last year (when he was six years old), Max came to me one day and asked, "Do you remember when we lived in Wisconsin?" I said that I did. Then he asked, "Do you remember when I was in the kitchen and I wanted to make breakfast for you the way Caillou [a television character] did for his mommy, and the glass broke and I had cuts on me and there was red dots on my legs and you put bandaids on me?" I was astounded that he remembered the incident so clearly. But I was even more astounded to find out that back then, even though he seemed so distant and unreachable, he was experiencing thoughts, feelings and desires just as a "typical" not-quite-four-year-old would. He was "in there" all along, just waiting for someone to help him "get out."
I feel that I need to tell other parents of newly-diagnosed children (or parents new to ABA/AVB and/or biomedical treatments) that not every child will respond to treatments and therapies as well as Max has. But then again, some might respond even better. There's just no way to know for certain until you try. But to me, trying and failing is always better than not trying at all. And sometimes when I look at the progress Max has made and I think how different things might have been if I had never heard of PECS, then WEAP, then AVB, then biomedical interventions...I have the sickening sensation of having narrowly averted a tragedy. And that's why I continue to tell our story--because it just might provide the ideas or the encouragement that will help another family avert the tragedy of a missed opportunity of happiness and hope for their child.