Patrick's Story
Part I
Patrick is now nine years old. It seems like much longer since he was born. I remember saying jokingly to my sister, when Patrick was only day old and sleeping peacefully in my arms, "This one's for me!" I don't know if I can properly articulate what I meant by that. Patrick was our second of three boys. Our oldest, Van, was the first grandchild in our family. Combine that fact with the natural urge to lavish attention on your first child, and you can understand that Van was the object of much affection. I guess I felt that the second time around I would have this one a little more to myself. Well, it turns out I was right about that. But it was not what I had pictured.
Patrick was born a healthy nine-and-a-half pound baby. The only complication during his birth was that the umbilical cord was wrapped tightly around his neck as his head came out, and the doctor was not able to unwrap it until he was pushed completely out. He was bruised and somewhat blue in the face, but began breathing within thirty seconds from delivery. We took Patrick home the next day.
Patrick was not a content newborn. He did not nurse well, and did not gain much weight the first month. This was upsetting for my husband and me because we believed strongly in the benefits of breastfeeding a baby. When he was one month old, Patrick developed thrush (a yeast infection of the mouth and, often, the intestinal tract). About the same time, we began supplementing his diet with formula because he was still not nursing well enough to gain the appropriate amount of weight. We tried Nystatin, an anti-yeast medication, for several weeks, but the thrush would not go away. Finally, the doctor advised me to take anti-yeast medication myself for two weeks, during which time Patrick could not breastfeed. We continued the Nystatin with Patrick, and I tried to keep the breast milk flowing by pumping. Still the thrush did not go away, and we succeeded only in reducing Patrick's willingness to nurse and my ability to produce milk. The thrush finally cleared up on it's own (or at least there were no more visible signs of yeast overgrowth) when Patrick was six months old. This is the age when most individuals are able to keep the yeast growth in check.
During his first six months, I often described Patrick as "colicky" because of his fussiness. However, I do not think his discontent was limited to the abdominal pain, or gas, that colic causes. He wanted to be held often. Most often I resorted to keeping Patrick in a "front-carrier," a pouch-like carrier on my stomach/chest. Often, the only way to calm him was to put him in the pouch and vacuum the floors. He was lulled by the back-and -forth motion and the hum of the vacuum. Sometimes I kept the vacuum running in the corner of the room so that the sound would keep him asleep. Patrick developed a strong attachment to our vacuums as he grew--something of a love-hate relationship. For a couple years, as a toddler, he had me lugging our pair of vacuums from room to room just to keep him from "losing it," as I called it, and throwing a horrible tantrum. (Our old vacuum had broken, but Patrick grew hysterical if I tried to throw it out.) Looking back, it's easy to surmise that his alternating fondness or fear of the vacuums was likely due to hypersensitive hearing.
His first six months were rough, but Patrick developed into a beautiful and content six month-old boy. He was very sweet and aware of everything and everyone around him. He developed on pace with a typical child, and we began to think that we were past the rough spot in the road. We celebrated his first birthday with a big party, as we had with our first son. In comparison, Patrick and our oldest son (at age one) were developmentally very similar. Patrick was walking and talking. He did not have as expansive a vocabulary as our first, but we attributed this to his being our second child, therefore receiving less individual attention. It wasn't until Patrick began to regress in his language and behavior that we began to seriously worry.
This regression began within the first few months after his first birthday. Patrick began to develop strange routines. I noticed he developed a separate routine which he would recreate as he entered each new room, or setting. It was as if he was reliving a fond experience. For example, as we entered his bedroom, he would immediately jump three times on his brother's bed, run over and touch the mirror, then sit down on the little chair. He had created many of these little sequences. Also, he became quite obsessive-compulsive about his things. As I mentioned, he wanted the vacuums with him wherever he went in our home. I was simply thankful we could leave the house without them! Furthermore, although Patrick had a few basic play skills, he didn't have the slightest interest in pretend play. And he often busied himself in odd sorts of ways with toys or other objects. He became obsessed with arranging things. In particular, he would obsess over his Thomas the Tank Engine and Friends train collection. I remember watching him with unease as he stood, at eighteen months of age, on his tip-toes on a step stool in front of his dresser, staring endlessly at his collection of trains. He would line them up, side-by-side, all in a row, like little soldiers. He would examine every minute detail with immense pleasure. But if he accidentally bumped the dresser and sent them slightly out of alignment, he would scream in anger and swipe them off the dresser and across the room.
Patrick was prone to tantrums of all sorts. He was very impatient and destructive. He lost almost all of his speech and replaced it with a loud and constant sort of chanting that sounded something like "Ah-eeeeh-Ah-eeeeh..." Patrick conveyed his wants and needs through gestures, tantrums, and crying. Furthermore, while indoors, he refused to wear any clothing other than his diaper or pull-up. To make matters as unbearable as possible, he became extremely hyperactive. He never sat still, and he developed a reduced need for sleep and it was very difficult to get him to go to sleep. He literally began to bounce off the walls. He would run back and forth across the room, pushing off the wall as he went. Or he would bounce endlessly in circles around the bed and over my body. When we tried to keep him in his room by himself, he would smash his head against the wall over and over, denting it and bruising himself. (Patrick couldn't stand to be separated from me. He retained this extreme attachment for several years.) I spent many hours actually laying partially on top of him trying to keep him in bed while he squealed and laughed and tried to wiggle free. There was no reasoning with Patrick, as his receptive understanding of language seemed to dissipate as well. No form of punishment or reward was effective in getting him to simply sleep and give us a few moments of peace. Every night it was the same, and Patrick would eventually lay down when his body was completely exhausted. I don't think his mind ever got tired.
Looking back, I often wonder how I remained sane throughout the years we had to deal with this type of behavior, especially when I became pregnant with our third child, Jack, when Patrick was only six months old. I had to deal with a breast-feeding infant while trying to tame a "monster" of a toddler. (Luckily, Jack was a fairly content baby and a happy toddler.) I'm not saying Patrick was without appeal. On the contrary, he was adorable and very cuddly, overall. He was curious and investigative. He could charm us with a smile, and he often made us laugh. It was just that, once again, our lives, and mine in particular, revolved around keeping Patrick from "losing it" in the form of a tantrum or some sort of total meltdown.
On several occasions we discussed our concerns with Patrick's doctor. We were told each time, after listing many of these problems, that our concerns were premature and each child develops at a different rate. I recall saying to Patrick's pediatrician, a very nice man whom I realized later knew absolutely nothing about autism, that Patrick seemed to me to be "mildly autistic." His response to me was, "But, he's so pleasant," because Patrick happened to be curiously holding on to his stethoscope and looking up at him at that particular moment. When Patrick was two years old, we demanded that his doctor order the standard tests to begin to determine what, if anything, was wrong. We attempted a basic hearing test, which, of course, was unsuccessful because Patrick was non-verbal and uncooperative. He then had a sedated hearing test which ruled out any hearing disorder. He had various blood tests to rule out chromosomal disorders. He also had a sedated EEG to check for seizure activity, and an EKG to monitor his heart. We were then sent to an area neurologist. At this point, I had begun to read about autism due to my earlier suspicions. By the time we reached the neurologist's office, I already knew that Patrick was autistic. The neurologist was capable enough to confirm my suspected diagnosis, but she knew nothing about effective treatment methods. Her advice was to get him signed up for the Early Childhood program at our local Special Education Cooperative and to check into speech therapy.
Patrick was diagnosed three months shy of his third birthday. It was a relief to finally have confirmation of a disability, but there was no clear path of treatment. Patrick was such a handful at this point. We began speech therapy immediately and signed Patrick up part-time in a local, private preschool for kids with special needs. The speech therapist and the school staff gave me lots of ideas for fun songs and activities to try to get Patrick engaged and participating, but he made little progress. When Patrick turned three, we shifted schools to the public special education program. This was a trying time for us, as we did not feel confident that the school could help our son. However, not knowing any other parents of children with autism or having any real knowledge of effective treatment, we accepted this course of action. I used Patrick's first nine months of "school" basically as respite time. I was so grateful for a little break from Patrick that I didn't worry too much about his lack of progress. We continued speech therapy with our independent speech pathologist, but this also made little difference.
After summer break, an Early Childhood Special Education classroom was set up in our local school. We were happy about this because it was a much shorter ride to school and we could be more involved in the classroom. I began to volunteer about three days a week in Patrick's class. We were becoming greatly concerned, as Patrick was now almost four years old and had not made progress. In fact, he was developing many negative behaviors instead of increasing his speech. From being in the classroom on a regular basis, it was clear to us that "Special Education" stood for childcare with educational window-dressing. The people on the "front-line," the teachers, aides, and various therapists, were all well-meaning and hard-working; however, they were so over-loaded with large numbers of children, they could have very little impact. Also, they knew almost nothing about how to effectively teach a child with autism anything of substance. Due to all these factors, Patrick was negatively affected by his involvement in the special education classes.
Prior to Patrick's fifth birthday, I finally met other parents of children who knew something about effective treatment methods, and I began gathering information from other parents and the Internet about Applied Behavioral Analysis, or ABA. This began the uphill climb on our journey of dealing with autism in our family. I can’t stress enough how important it is to talk to as many parents of children with autism as you can. This is where you will find the answers to your questions. Furthermore, even if you don’t agree with the approach some parents take to treatment, they often have “gems” of information which are quite helpful.
Part II
As Patrick was wrapping up his third year in public special education, I used the time he was at school to learn as much as I could about ABA. Through other parents, I learned of providers who would come to my home to train me and a staff I had assembled to use the principals of behavioral analysis to teach Patrick. Three months shy of Patrick's sixth birthday, we had the first of many ABA training "workshops" in our home. Initially, we contracted with The Wisconsin Early Autism Project (WEAP) which is now named The Great Lakes Early Autism Project. This organization will train clients in a loosely-based "Lovaas" style therapy (this is a more traditional type of ABA which uses discrete trial teaching to teach a variety of things, including compliance). WEAP was formed as a replication site of the original UCLA-based ABA program created by Dr. O. Ivar Lovaas. This distinction means that, generally, therapy was done at a small table where the therapist would entice the child to come join him/her by providing fun, or "reinforcing," toys and activities available. It's important to note that in our early therapy with Patrick, the focus was always on making sure therapy was fun for him. He was not forced to sit through endless, boring and repetitious trials. We did switch to what we consider to be a more effective form of ABA therapy later on, called Verbal Behavior. However, Patrick's early therapy, while not perfect, was still a very effective teaching method.
I gained a lot of information from networking with other parents, the most important of which was knowledge of ABA. Something else I discovered was a way to get Patrick to simply go to sleep. As I mentioned previously, Patrick had a reduced need for sleep. It was very, very difficult to get him to sleep. And often, he would wake up charged and ready to run after sleeping only a short while. Sleep deprivation is very hard on parents, especially when dealing with the stress of caring for multiple children, including one with autism. It weakens your immune system and reduces your ability to think clearly, among other things. In short, it has a profound, negative affect on your quality of life. After exhausting all the usual methods for getting a child to sleep, we learned of and began to administer, a small dose of melatonin to Patrick prior to his "theoretical " bedtime. Melatonin is an over-the-counter, all natural sleep enhancer. It is the same substance your body naturally produces to make you drowsy so you can sleep. From the first night we gave him melatonin, Patrick has been able to fall asleep relatively easily. This fact has improved the quality of our lives almost as much as the effectiveness of ABA therapy. Sleep deprivation is no laughing matter, as my husband and I can attest!
Early therapy was exciting for us, as we finally learned how to teach things to Patrick. Up to this point, we had been using what we refer to as regular, or sloppy, teaching methods. For example, we would ask Patrick to do something and expect him to comply. Most children with autism, including Patrick, don't have the underlying social motivation for approval. Therefore, Patrick had no motivation to do what we asked. He didn't see complying with us to be of any benefit to him, and therefore, had no intrinsic reason to do so. For the first time, we learned how to use the things that Patrick liked as reinforcers, or motivators, to get him to comply, communicate, and learn new tasks and information. In the first six weeks of home therapy, Patrick learned (and demonstrated) many, many things he had been unable to master through years of speech therapy and special education. And he continued to learn and progress as each day, week, and month passed.
In addition to learning how to use reinforcers to motivate Patrick, we also learned how to break tasks down into simpler, or smaller elements and then teach them sequentially. We learned about discrete trial teaching. A discrete trial is simply presenting a question or a demand (for the purpose of teaching), getting a response (or answer), and rewarding (or reinforcing) that response. Anything can be taught in this manner. These basic principles, along with prompting (or helping), and the subsequent fading out of prompting, are what allowed us to effectively teach Patrick more and more each day.
Each new word, task, or skill Patrick mastered was one more baby step toward a more functional, meaningful life for all of us. We were finally seeing progress after so long. This progress did not come without effort and sacrifice. I made a decision, even prior to Patrick's diagnosis, to do whatever I had to do to get him learning, and to help him go as far as he could developmentally. This was basically a life style decision for me, and to a certain degree, for my husband. I tried to devote as much time as I could to helping Patrick progress, without taking too much away from my other two children. I feel it's very important for the parents of a child with autism to be deeply involved in daily therapy in order for the child to make the most progress. If at least one parent has the time and the drive to get involved, this is of great benefit to the child and the other family members as well. This parent can educate the rest of the immediate and extended family on the current goals for the child and the specific methods being employed to reach these goals.
We continued with this type of ABA therapy for about two years. During this time, Patrick made much progress. Everyone involved with Patrick up to this point was amazed by his development. He had come so far in this period that we felt he would benefit from some inclusion in a regular kindergarten class. Convincing the school personnel, and the special education administrators in particular, that Patrick was ready for this proved difficult. After a lot of negotiation, and the approval of an aide for Patrick who had worked with him previously in our home, Patrick was allowed into the kindergarten class in our home school. Patrick was nowhere near the verbal development of his age-appropriate peers. (Actually, Patrick is one year older than his classmates.) However, he had been taught many, many things which we were able to generalize into this classroom environment. His instruction was very personalized and quite structured. The most important aspect of his integration is he was afforded many opportunities for interaction with his peers. Initially, he was taught to imitate them, and then he began to spontaneously do so. He was taught to request things from them, go with them when asked, and to seek them out for play. He began to associate with his peers as fun little playmates and not just foreign bodies who took up space. It was quite special to visit the class and see him rehearsing a program's song and copying the dance moves of the other children, or participating in play while smiling and laughing with another child. His home program was still going strong, and we did peer interaction there as well. However, the integration into this larger kindergarten group proved very beneficial.
Before I knew anything about ABA therapy, I had heard the therapy itself referred to only in negative references from people who knew nothing about it. This was unfortunate, because it prevented me from investigating it. Such references came from speech therapists, school personnel, and other parents. It's sad how a lot of people can spread misinformation which can indirectly have such a negative effect on others. In our case, the false rumors I had heard at least in part prevented Patrick from getting effective therapy earlier. Thus, we wasted many of the crucial early years in his development. But I'm not crying over spilled milk. We're very happy with the great progress Patrick is making. I just can't help but wish we had started sooner.
An important part of Patrick's early therapy was the implementation of an effective communication system for him, as he was initially non-verbal. Through another parent, I had learned of a system called PECS (Picture Exchange Communication System). This system is marketed by a company called Pyramid Educational Consultants, Inc. PECS is a system in which you use laminated pictures to ask for desired items, and later on, to communicate more elaborate statements. These pictures are attached with velcro to a vinyl notebook and carried with the child. I ordered a video, an instructional manual, and supplies to begin using PECS with Patrick. I also went to a few PECS conferences during the first two years we implemented the system. It's extremely important to get appropriate training when implementing PECS in order to see good results. Patrick began to say words with this system. He also began to expand these words into sentences. Early on, he did not develop spontaneous speech, but after some time, and a lot of effort targeting this goal, we began to get more and more spontaneous speech. We did reach a point with this communication system where Patrick's speech development seemed to plateau. In other words, we felt that there was really only so far we could go with verbal development using a PECS system.
Our experience with PECS was a good one. Our ultimate goal for Patrick, when we started using PECS, was to get him speaking. As I stated early on in this summary, Patrick had some early words, which he lost. At the time we didn't know it, but this was a good indicator of his potential to develop speech from using PECS. If a child does not have some history of talking, or the ability and desire to babble, there is not as high a success rate of developing speech from PECS. I know other parents whose children did not develop speech from PECS. For these reasons, it may not be the best choice for a communication system, but it is certainly beneficial for many children.
Patrick's home therapy was very effective. In some ways, though, it needed improvement. Patrick displayed a lot of self-stimulatory behaviors (stims). If he was not highly motivated, he would begin to stim in some way that he found more fun than participating in therapy to get the offered reinforcement. We tried to keep Patrick motivated in order to avoid these types of behavior, but the therapy itself had some intrinsic problems which were hard to get around. For example, therapy was done mostly in some contrived working environment, such as at a table, on the floor, or wherever we had set up our stimuli. Therefore, we had to set up, or make available, what we hoped would be highly reinforcing items, at that spot. This often had the potential to fail. Usually, we were removing Patrick from an area, in which he was already having fun, to go to another area where demands were most certainly going to be placed upon him. Also, the therapy was often not fast-paced and varied enough to prevent some boredom. These limitations, combined with Patrick's plateau in verbal development with PECS, led me to investigate another form of ABA therapy called Verbal Behavior.
Implementing the principles of Verbal Behavior (VB) in our therapy with Patrick has been invaluable. Verbal Behavior is a form of Applied Behavioral Analysis. It has many similarities with the kind of ABA we were previously implementing. However, it can be more effective for several reasons. VB concentrates at all times on increasing the child's verbalizing, or communicating through sign language, hence the name "Verbal Behavior." It is a therapy based on B.F. Skinner's theory of speech as a learned behavioral phenomenon. Skinner's theories on speech, it's development, and it's functions are the basis for a very informative and useful book called "Teaching Language to Children with Autism and Other Developmental Disabilities," by Drs. Mark Sundberg and James Partington. Reading this book and attending several conferences on VB helped us to improve and expand Patrick's therapy. I was also lucky enough to find a qualified VB consultant.
In early therapy, due to Patrick's limited receptive language, we used simple and structured language to help Patrick learn. An important step in therapy is to generalize, or expand Patrick's understanding and ability to apply the things he has learned to several stimuli and environments, and with various people. This is not a simple task. We often had difficulty completely generalizing, and often were not successful. Since a skill is not truly mastered and useful to a child until it is generalized, this was a major limitation. Also, we had trouble getting Patrick to comply when we varied our language too much from the structured commands. And more troubling, Patrick seemed a bit stuck in his verbal development. VB allowed us to get out of this rut, and continue making good progress.
The first VB conference my staff and I attended seemed designed to help us generalize Patrick's language and skills. We learned much about mixing and varying tasks and instructions. We also learned how to make therapy fast-paced and more interesting by varying our language and making use of good prompting and prompt-fading techniques. More importantly, we realized our early therapy did not focus enough on teaching Patrick how to express his wants and needs. In VB this is referred to as "manding." We learned how to center therapy around increasing Patrick's spontaneous manding. We learned a lot about the stages of verbal development and what was important for us to build on in order to keep seeing verbal progress. As he progressed, we expanded other areas of Patrick's language, such as labeling, or "tacting," describing functions, answering simple "wh" questions, and more.
For children who are not yet verbal, VB often implements the use of sign language as a prompt, or a prerequisite, so to speak, for language. Patrick was already verbal, to a point, when we began VB. Therefore, we have needed to use only a few signs as visual cues, or prompts. Sign language, if used as VB intends, is an extremely effective communicative tool for a child with autism.
VB has been more effective with Patrick because we use the natural environment much more than before. We "capture" motivation as it's happening and use it to teach. We are burdened much less by having to create motivating situations at a table, or in some localized area. Therapy is still done in this way, at certain stages of verbal development, but much of therapy is more varied and mobile. We're still, however, responsible for creating fun and interesting opportunities for play and therapy. Furthermore, we have learned through VB how to more effectively control the reinforcement and keep Patrick tuned in to us, because we are the providers of this reinforcement. An important focus of VB is helping the child with autism to see the therapist, or teacher, as someone who is fun to be around. He should see therapy as beneficial for him, or in his best interest. In other words, we've learned that therapy should convey to Patrick the idea that the teacher brings with him/her lots of opportunities for fun and an improving set of conditions.
Another important aspect of VB is if the child displays a negative behavior (like screaming, hitting, grabbing for a reinforcer, or simply not complying), then the therapist needs to reevaluate his technique. There is a constant focus on pairing the therapist with reinforcement, gaining compliance by pairing the level of demands with the value of the reinforcement, and preventing boredom by eliminating needless repetition. Repetition is replaced by mixed and varied questions and instructions, with prompting and prompt-fading as needed to keep the child successful. Some form of repetition is necessary for a child with autism to retain information. Rather than presenting trial after trial of the same question, VB presents a target item at random intervals during therapy. Also, the word "no" is never used in VB. The concept of errorless teaching is fully embraced. Instead of saying no when a child is incorrect, the incorrect response is simply ignored and the correct one prompted and reinforced. In this way therapy remains completely positive.
Verbal Behavior is the most effective form of speech therapy and instruction I've come across. It has been of tremendous benefit to Patrick and our family. Patrick is currently attending the same local school five mornings a week and is in home therapy five afternoons a week. We are always trying to improve our technique both at home and at school, so we can keep Patrick developing verbally, socially, and academically. Patrick was very profoundly autistic. But he has learned a great deal. He can talk, and play. He can participate in most anything his typical peers can. In school, he targets many of the same academics as his peers, but in more simplistic and repetitious fashion. He may have made more rapid or greater overall progress had we known of and implemented appropriate therapy at age two or three. But, we're very happy with what we've accomplished so far, and we place no limits on Patrick's future!