Introduction:
The mother of one of my students once said, “We all know that there is nothing wrong with our kids; it is all of the other kids who have the problem.” By “our kids,” she meant her son and my son, both of whom had ASD. She meant all of the children with special needs who with a little understanding should be able to live their lives without any negative interference from those who see them as different. When you have or work with children with special needs, it is simply a given that you learn to recognize the amazing qualities and gifts that they bring to the world. So, although I tend to agree with my student’s mother on the one hand, the world outside of the classroom is filled with a majority of those “other kids,” and our kids have to learn how to live successfully in the world with them.
As much as we try to change the environment in order to create a social safety net for children with special needs or even those who are just a little socially quirky, it is simply not realistic. That is the purpose of this book, to make life just a little easier for children who have documented social cognition challenges such as autism spectrum disorder (ASD) or even just for those who find it a little challenging to find their place in the world.
Countless time and money are being spent teaching kids not to bully others. There are mixed reviews as to whether this training is at all effective. Even with the best sensitivity training in the world, there are still times when kids will be singled out because of their differences. The real tragedy is that some of these differences can be easily made a little less different or at least made to be a little more positive so that students do not stick out in a way that makes them a target for other kids. As much as we would like the world to change to meet the needs of the few, the few sometimes need to be willing to make some changes to make it easier for them to fit into the world, at least if they want to, and it’s been my experience that most of them do.
Bullies are opportunistic, so it only stands to reason that giving them less reasons to bully would lessen their opportunity. Parents and teachers can help with this tremendously. Often the kids I’ve known and worked with who have been victims of bullying have had some behaviors and habits that to put it bluntly, others found annoying. As much as parents would like to believe their child is totally blameless, and often they are, it’s important to understand that a child’s behavior has a direct effect on the way they are perceived and treated by others.
From what they wear to the noises they make; children can unknowingly make themselves targets of bullying. This is especially true for children with social challenges. This may be difficult for parents to hear and to process. It is difficult to write about. But after almost twenty years of teaching in schools and working and observing students of all ages and abilities, I’ve learned that rather than trying to teach all of the “other kids” how not to react to behaviors that even the most stoic adult would react to, there are some simple strategies that are often missed that could be taught to significantly help “our kids.” Our kids need to understand that the feelings of others matter too.
Social groups are beneficial, but there is more we can do. And that is to teach our children that yes, neurodiversity should be embraced. Our brains are different for a reason, and we need those differences. But at the same time, we need to realize that there are some behaviors that others find aggravating that could easily be modified so that people will want to hang around us.
If a person grows up to be an eccentric expert in their field and doesn’t care what anyone else around them thinks, that’s fine. But they need to know that the attitude of “I don’t care what anyone else thinks” increases their chances of being alone.
Other people’s feelings matter too. And most of us have to go to work and in some capacity, work with others. Be the eccentric. Be whoever you want to be. But first you have to get through middle school.
This book is for those quirky, wonderful, talented, and unique individuals who walk that fine line between being themselves and still playing well with others. This book is about taking away the target.
Chapter 1: The Backstory: Why I Got into the Field of Special Education
As a child, I never imagined becoming a special education teacher. From the time I was in fourth grade, I wanted to be a writer. I wanted to go to college, major in English, and eventually get a PhD in Literature to teach college and write. Apparently, there was another plan for me. After graduating with my degree in English, I got married, and one year later I had my son, Brendan.
For the first few months, everything was blissful. My husband had a good job that allowed me to stay at home and solely take care of our son. My days were filled with peek-a-boo, classes at Gymboree, lunch dates and mall trips with friends who were also home with little ones. Life was good. My son Brendan cooed when he was supposed to coo, rolled over when he was supposed to, and smiled at us like crazy. He was perfect in every way. His head was a little larger than normal, but so was his dad’s. Overall, there was nothing to worry about.
One thing to my advantage was that I had spent a great deal of time with kids my entire life. I started babysitting when I was twelve years old. I worked in the church nursery as a teen, Mother’s Day out, and preschools. My son Chase was neurotypical, so I had a pretty solid understanding of what typical behavior looked like. So, for me it was not long before I knew that something with Brendan was just not quite right. Looking back now, and knowing what I know now, I realize the signs were there much earlier than when it became obvious.
Brendan never raised his arms up to indicate that he wanted to be picked up or held. He never showed any signs of separation anxiety, and he never pointed. (It wasn’t until a couple of years later that I would learn how meaningful the act of pointing is.) But the obvious signs didn’t come until he was a toddler. I say they were obvious signs, but they may not have been as obvious to someone who didn’t have experience with children.
One thing I started to notice was that when people I knew would see us at the grocery store, and they would try to get Brendan’s attention, either by talking to him or making funny faces, Brendan acted as if they weren’t there. It didn’t appear that he was intentionally avoiding them; it was just as if they were no more interesting than the display of paper towels in the aisle next to us. After failing to get Brendan’s attention, they would just kind of smile at me, make small talk and go on their way. Remembering the many babies I had played with and taken care of throughout my life, I did think Brendan’s behavior was unusual but certainly not enough to sound any alarms.
Brendan didn’t say much either. But his language delay was not enough to make his pediatrician worry, so I tried not to worry either. Whenever there was a milestone to be met, which I kept well on top of with the “What to Expect…” books, Brendan reached it right at the last minute, but still within the “normal” range. If the normal range of walking was from 9 to 14 months, Brendan walked at 14 months. If the range for saying first words was from 9 to 18 months, Brendan uttered a version of “dog” (his first word) at 18 months. There was nothing that anyone thought I should be worried about, but I did have a feeling that something was “off.”
One day when Brendan was playing with his animal figures, well, he didn’t actually “play.” He simply held the animals, or he would line them up, but it was clear that he didn’t make up little scenarios the way most children do. So one day he was intently “playing” with his animals when his father came home from work. His father has a very gregarious personality, the type many would describe as the life of the party. He walked in from work and said, “How’s my boy?!” Brendan just looked up from what he was doing for a millisecond and then resumed his “play.” This was definitely not normal behavior for any toddler that I had ever been around. Yet still, no one was worried but me.
Brendan always loved the water, even from time I gave him his first bath. As I would pour water down the back of his head when he was just a newborn, he leaned back and the water seemed to have almost a hypnotic effect on him. When he was a toddler at bath time, I would dutifully sit beside him in the tub. I would watch while he pushed his toys back and forth in the water. It wasn’t until many years later when I was playing with one of my younger neurotypical children that I realized how much they engaged with me when they were in the tub. Brendan, on the other hand, never engaged with me at all. I was there to make sure he didn’t drown, but other than that I was just another bathroom fixture.
When Brendan was about eighteen months old, the three of us took a trip to see my best friend, Kim, who lived in Oklahoma City where I grew up. She had a son, Chandler, the same age as Brendan as well as a son two years older, Jared. Chandler and Jared were very interested in all of us, excited that new people were staying in their home.
Another friend of ours came over, and she was having fun playing with Chandler. But Brendan remained aloof. Brendan did not even want to stay in the living room where the rest of us were but preferred to stay in Chandler’s bedroom watching movies. He came into the living room for a moment, probably to get me to put in another video, and he ran right past my friends. I heard my friend Kim say to my other friend, “Yeah, I can’t get him to warm up to me either.”
That statement really hit me hard. It was like a staunch realization of what I had been thinking for months. Brendan didn’t warm up to anyone. Sure, I felt close to him, but he didn’t seem to notice or mind when I was gone. The funny thing was, at the time I took this as a compliment to my mothering skills. Since my son didn’t cry when I left him, I was obviously doing a great job of teaching him to be secure. While my friends couldn’t even go to the bathroom without their children squawking, I could leave for hours, and my son was fine. But gradually it began to sink in. He did not interact with me when I was giving him a bath. He did not “get into” anything; we never even had to put any child locks on our cabinets or drawers. He did not seem to have any interest in people at all. And despite all of the advice I received to the contrary, I knew that this was just not right.
Soon after the trip to Oklahoma, Brendan entered preschool. He was two years old. I took him to a very reputable school in Princeton, NJ where we lived at the time. He was only going to go three days a week for 2 ½ hours a stretch. Since I was not working at the time, the sole reason I was taking him to school was to give him the opportunity to socialize with other children.
The day of orientation when Brendan met his teacher for the first time, he was sitting down, playing with a basket of animals. He lined them up, put them back in the basket, and dumped them out again. His teacher was a lovely, bubbly, warm person, the epitome of a preschool teacher. I told her my concerns that he didn’t seem to interact with people in a typical way. She told me she would keep an eye on him. I knew that she would be a better judge of typical toddler behavior than even Brendan’s pediatrician would be; she worked with toddlers every day.
It wasn’t long before I got a call for my chance to observe Brendan at school. There was a window that was mirrored on the children’s side, so they had no idea you were there watching. I watched all the children playing next to each other, talking to the teacher, acting like typical toddlers. Then I saw Brendan. He took the basket of animals, dumped them out, lined them up, put them back in, lather, rinse, repeat. He did not make eye contact with the other kids, and he did not even seem to acknowledge the teacher.
After the observation, I spoke to his teacher, and I said, “That’s what I thought.” She told me he should be evaluated. She suggested that I call the school district and inquire about an evaluation and early intervention services.
The first call I made was to my school district’s child study team. They scheduled a learning, psychological, and social evaluation. As I was being interviewed for my portion of the evaluation, I excitedly told the psychologist that Brendan had started taking my hand and bringing me to what he wanted. I thought this was a breakthrough in communication because I finally understood what he wanted. For me this was like a light had been turned on. My son did not shake his head up and down or back and forth to answer a question, but at least he could tell me what he wanted. It wasn’t until months later that I learned that this behavior was called “autistic hand leading,” and typically developing children either use words or gestures by this stage of development.
Immediately after the evaluation, we gathered around to discuss the results of the battery of tests. All they could tell me was that Brendan “qualified for early intervention services.” I remember telling them, “Okay, but I want someone to tell me that my son is not autistic.”
“We can’t tell you that,” was their reply. “We can only recommend services.” And yet the services they were recommending were to be provided by The Eden Institute whose descriptor is: Serving Individuals with Autism. That was one of my first important lessons about public school districts: they cannot diagnose. You must look for outside services, which are often not covered by insurance.
I immediately called to set up early intervention services. I also contacted a neurodevelopmental pediatrician out of Robert Wood Johnson in New Brunswick. It was there that Brendan first received the diagnosis of PDD/NOS- Pervasive Developmental Disorder/Not Otherwise Specified. Today this diagnosis would fall under the ASD (autism spectrum disorder) umbrella.
Brendan was also born with aortic stenosis, a congenital heart disease, but once he received the diagnosis of autism, the heart issue became secondary. After all, they knew everything there was to know about the heart. They could take it apart, put it back together, and even put in a whole new one if necessary, so that became a much smaller issue. Plus, we were lucky enough to live near the Children’s Hospital of Philadelphia with some of the top pediatric cardiologists in the world. We had that one covered.
I honestly can’t say that I was devastated by the autism news. I had done so much research on my own that I already knew what the diagnosis meant. Obviously being sent to the Eden Institute was a big clue, but until you hear it from a professional whose job is to diagnose developmental disorders, there is a part of you that wants to believe your well-meaning friends who say, “Oh, he’ll grow out of it.” As strange as it sounds, it was almost a relief to know that what I was seeing had a name and was real. It wasn’t just in my mind. To me, the greatest fear is the unknown. Once it had a name and was real, then I would figure out how to handle it.
Brendan started discrete trial therapy at the Eden Institute a week later. He was two-and-a-half. Discrete trial is basically a form of Applied Behavior Analysis (ABA) where three objects are lined up in front of the child. The therapist then says, “touch spoon,” or whatever the object is that the therapist wants the child to touch. When the child successfully touches the object 10 out of 10 times, the child gets a reward. For some children the reward might be a Goldfish cracker or an M & M. For my son it was a little animal figure. He just wanted to hold one, and this was what motivated him. The idea behind discrete trial is that it is correcting neural pathways that are either damaged or missing in the brain of the autistic child. It is also developing an understanding of communication.
Through my research I learned that children with autism need much more ABA training than would be provided through early intervention services. The Louvas method, which at the time was thought to be the best practice for treatment of autism, suggested giving 20-40 hours of therapy each week. I knew that would not be possible, but I also knew that I needed to give Brendan more than the 2 ½ hours per week the school district was willing to provide. We paid out-of-pocket for an additional 3 hours.
Since Brendan’s therapy would be one-on-one with a service provider, I still wanted him to have socialization. I tried to keep him at the preschool where he had been going but their response to me was, “We just don’t think this is the right place for him.” Brendan was not a behavior problem at all, but he just didn’t fit into the mold of self-directed students that they wanted him to. That was another lesson I quickly learned: Children with special needs are often discriminated against even by well-meaning top educators. Sometimes their differences are just a little too different. Despite the setback, Brendan mastered discrete trial quickly. It wasn’t long before he began the autism program in our local school district.
During this time Brendan’s language began to emerge. Whereas before the most impressive thing about Brendan’s language ability was that he could mimic literally any animal, from a dog to a zebra, he now began to form words and even put some simple sentences together. He was three years old. His speech therapist suggested that we begin to use the Picture Exchange Communication System, or PECS with Brendan, but I refused. I wanted to focus on his language, and as it turned out, I was right. That was another important lesson that I learned on my journey: trust your instincts.
Brendan rapidly became too high functioning for the school’s autism program since most of the students were nonverbal, so he was placed in their “Handicapped Preschool Program.” Today that name would never fly, but keep in mind that that was over twenty years ago. The program was a mishmash of various learning and behavioral issues. This continues to be the model for special education inclusion classes all over the country.
In this program I met other parents who like me, had done their research. It was through other parents that I learned that Brendan would need private speech and occupational therapy because once again what the school would provide would simply not be enough. Keep in mind that the school is responsible for providing what the child needs to be functional at school. There is a big world out there besides school, and it is up to the parents to teach outside of school hours. This was when I learned about Princeton Speech-Language & Learning Center, where I took Brendan for speech and occupational therapy. I was fortunate to have the time and money to find outside services. Later in this book I will also suggest ways to compensate for this when time and money are an issue. I completely sympathize with that predicament, especially since my situation was about to change too.
For kindergarten and first grade, Brendan remained in self-contained special education classrooms. His teachers were wonderful, and he did learn a great deal, but I felt he was capable of more. His language was coming along, although he still sounded at least two years behind. He was starting to read, and I felt that being with typical learners might help challenge him. Per my insistence, he was scheduled to be mainstreamed for second grade with two of his classmates and a shared aid. Although not the best model for all students, this proved to be a good model for Brendan.
During this time, Brendan also had to deal with the fact that his parents were getting a divorce. My days of being a stay-at-home mom with the time and resources to give my son all the services I felt he needed were over.
