Charlie’s first teacher, Miss Ginette, was a Godsend with a capital G. She is patient, loving, kind and most of all she is consistent in her training of Charlie. I was, at first, determined not to like the school because I was afraid to label Charlie as autistic. A lot of people, including my sister Peggy, who was working in a school, told me that a label would stick with him his whole life. I should be careful not to jump to label him without serious consideration. Most people that I’ve talked to about Charlie, told me that they didn’t think he was autistic, and I clung to that. But, the logical part of my mind told me that if he was autistic or even just learning delayed, and I did nothing I would miss that teachable window that is so important in kids. I was filled with fear of reproaching myself if I did nothing. I was convinced that this school could do more for Charlie than his private speech therapy had done.
So, Charlie continued in preschool. This preschool used an ABA type of therapy. In November of Charlie’s first year, the school staff began training in the Verbal Behavior Program and that program went on line in January, with all of the kids participating. It was a big change for the kids and staff, but I believe it really clicked with Charlie.
Unfortunately, Miss Ginette left the classroom for several months during the tail end of Charlie’s first year of preschool and a different teacher took over. He lapsed on his potty training, but he recovered his training fairly quickly. Every morning Charlie would sing a little song, “I’m gonna see Miss Ginette,” even though she wasn’t there. He missed her so much. Once in a while she would come back into the class. Because her new job was in service coordination and she would meet with parents of kids from the preschool. Charlie seemed to enjoy the visits, but we found that he was sad for days afterward and reluctant to go back to school. We played that down, not wanting to reinforce his reluctance.
We were all thrilled when Miss Ginette returned to the classroom several months later. The change in Charlie, when Ginette was back, was profound. He seemed like all was right in his world again.
Pretty soon the time came for Charlie’s transition meeting which signaled the beginning of his Kindergarten eligible year. When a child is five in Pennsylvania, they are old enough to be in Kindergarten. They don’t have to attend until they are six. In PA, kindergarten is non-compulsory, but standard procedure at the Intermediate Unit, is that a five year old child would be transitioned out of the developmental preschool and into kindergarten. Usually a special education class.
We had Charlie’s IEP meeting in February. All of his teachers, administrators, service coordinator and parents came together to decide the path that he would take in the fall. There were several options available to us.: One, a life skills class. Two, a mainstream preschool run by our local district located two blocks away from our house. Three, his current preschool, which he could legally stay in until the summer after he turned six. Or four, kindergarten at our local district elementary school with learning support.
We knew that Charlie was not ready for option 4. Kindergarten today is not what Kindergarten used to be 20 years ago. No Child Left Behind has changed that and not for the better, in my opinion. Kindergarten today is reading, writing, it is a full day program. Basically it is what First Grade used to be 20 years ago. So we crossed option 4 off of the list right from the start.
The Intermediate Unit’s psychologist made it clear to me well before the meeting, that she felt that Charlie was ready for the Life Skills Class and that in her opinion, it would be the best placement for him. She pushed hard for that option. I mean, she was determined that she wanted us to know that was his best option, in her opinion, for Charlie at that point. I balked like a mule at the edge of a cliff. She said, “Do you really want Charlie to be in a class with three year olds?” I really didn’t think that Charlie was developmentally that different from three year olds, or that it bothered him a bit what age the other kids were. What I really wanted, was for Charlie to continue in the Verbal Behaviors program, which had begun at this school in January. It had made a huge difference for Charlie in just six months. I wanted him to continue Verbal Behaviors for another year. Let’s just say, we didn’t have a meeting of the minds on this whole transition thing.
The Life Skills class that I mentioned earlier is located in a school 18 miles away, in the next town over to the west. There are no non-disabled kids in the class, unlike Miss Ginette’s class, which had some kids who were typically developing children. All of the other kids have some sort of cognitive disability, some suffer from mental retardation, some also have physical limitations.
I visited the school with Charlie and Rachel, accompanied by Amber and we met at the front of the school by the IU’s special education administrator. He showed us through the school. The school is just so awesome, it’s new, colorful, the library is so neat! I was thinking, WOW! Charlie would love this! The administrator led us down a long hall, then we took a right, past some bathrooms and finally down near the end of the hall. Charlie balked at the door to the class. There was a slight urine odor and Charlie just refused to go in. Amber said that she would stay outside with him, after I had tried to carry him in and he thrashed and rolled in my arms. We could both see a major meltdown coming soon. She took him out to the playground. Rachel was good and sat with me. I was able to really get a good look at Life Skills.
As we walked into the Life Skills class, which is about twice the size of an average classroom. I could see that the room was full. There was a lot of special equipment in the room, a telephone set-up which would allow kids to play act a phone conversation, some recording/play back equipment, about eight or twelve wooden desks set up in three rows in the center of the room. These were older style desks with plastic chairs. Not the newer trapezoid shaped desks that many of the other classes had. There was not a lot of room to move around in the classroom, it seemed slightly crowded. I felt a little claustrophobic, but maybe that’s just me.
There was at least one teacher, maybe two, I wasn’t sure. About three aides and maybe six or seven kids. My impression was, that the class is small for the amount of kids, adults and equipment that it contained. It felt cramped. It was painted pale green and seemed cheerless. There was not the artwork hanging up that the other rooms had, no posters, no sound. It was very quiet.
The kids sat at their desks and worked on papers. One child raised his hand. His hand was up for a long time, but none of the adults noticed it. Eventually he dropped his hand and went on with his work, ignored.
I felt that it was a grim room. I was not impressed when I saw it. The kids were sweet, and some smiled at us, one boy talked with me before I left. I wanted more for Charlie. I wanted a classroom with colorful pictures, art work, a circle area, you know, I wanted Kindergarten for Charlie. Toys, books, fun stuff. I was told that those things are too distracting to the kids. I wanted some noise, some fun, some play. Is that wrong?
When I asked the person leading me through the class what the kids are taught. He told me that they learn: letter, numbers, sight-reading of ‘danger’ words, how to count money, and necessary social skills. They are given developmentally appropriately core subject assignments, which they complete with the help of the aides. At 7th grade, they transition to a school that is an hour away. This secondary school becomes their vocation school. The kids are assessed to determine what vocation they might fall into. Most of them have an aptitude for cleaning and many of them work on the school’s custodial crew as part of their schooling.
I was appalled. I was horrified. I strongly felt that putting Charlie in that class would be low-balling his abilities and short-circuiting his potential forever. Every single year that he was in that class he would fall further and further behind kids his own age group. Charlie was catching up! He was, at this point, up to 36 months on the Denver Developmental Test. He had come 18 months in a ten month period. He was accelerating. We didn’t want to stop that acceleration. But in the mind of the administration and the psychologist, Charlie would never catch up. Even hoping for that was a fruitless waste of time and resources. Put him where he belongs and where he will be safe, in Life Skills. I was grateful that we live outside of the school district where Life Skills was located. If we lived in that town’s district we would not have had a choice and they would have forced Charlie into that class. They force all of the autistic kids in that town into life skills.
Chuck and I felt that the best approach was not on the list. We kind of made it up on our own. But then, that is what we have always done with Charlie, is to see what is out there and try to tailor a program to Charlie, rather than vice-versa. Our proposal to the team was that Charlie continue in Miss Ginette’s class throughout next year and at the same time, adding to that three days of traditional preschool taught by Miss Kitch, here in our town. We got a little initial resistance, but the woman who is the head of the Potter County Autism Team was on our side and I think that pushed things in our direction.
This was an aggressive and challenging schedule for Charlie, and I was concerned about Charlie having to get used to a split schedule with van rides on three days a week and then Monday and Friday with no afternoon classes and weekends off. I was sure that he would be upset by the constant changes. But what I didn’t count on was how much Charlie would love the addition of the new school.
Ms. Kitch’s school was located in the first floor of the Baptist Church in Ulysses, PA. It was a spacious room with tons of fun things to play with. This would give him an opportunity to interact with neuro-typical kids on a level that is like what Kindergarten used to be like.
Where we live, in Potter County, PA there are so few kids in the district that there is only one elementary school and one high school which are located in one complex with a large parking lot between them. Our class sizes average about 15. Graduating classes rarely exceed forty, but most kids do graduate. Last year there were no dropouts at all and the administration found that there is actually no way to present zero attrition in the paperwork that has to be submitted to the state, it is assumed that there will be dropouts.
The High School and the Children’s School have about 680 kids and this forms the entire district. The kids all start off in preschool together and eventually, they graduate together. They form their peer group early in preschool. By kindergarten they are fast friends. I wanted that for Charlie. Kim, Ricky and Andy changed schools a lot, we had to move a lot due to my job situation as a single mom. They lost friends with every move. I didn’t want that for Jon, Charlie and Rachel. I didn’t want Charlie to have his friends from school to be located in another town where he would never see them outside of classes. I wanted him to have friends and to be in school with Jon and eventually, Rachel.
I felt it was essential for an aide to be with Charlie in the regular preschool. I didn’t know a lot about Aides and soon learned some essential lessons. First of all, an Aide is a person who is hired by the school and although they are required to carry state clearances, they are not required to have any training at all. In fact, the schoolbus drivers are more highly trained than the aides. Not that there are not some excellent aides out there, but there is no requirement for training at all.
I was informed about the differences between aides and a TSS. Which was what we really were looking for, although we didn’t know the right term. Knowing the right words is essential. TSS services are provided by the Wrap-around program, which is funded and overseen by the State and provided by local mental health providers. Wrap-around provides behavioral management services in three tiers. The top tier is a psychologist who diagnoses the child and decides what course of action is required. The second tier is a mobile therapist who oversees the therapy which is carried out by a Therapeutic Support Staff member or TSS. The TSS is the person who interacts with the child on a day to day basis. This was a lot of information to take in at one time, but I was glad to learn the difference between aide and TSS before school started and we would have been stuck with an aide when what we needed was a highly trained TSS.
We first tried the closest agency to us geographically that provided wrap-around services, but I had some problems with that provider. The first problem was that the behavioral mobile therapist who came to the house was unprofessional. She was dressed in a t-shirt and jeans with no bra on (believe me, it was obvious!). She lounged on the sofa with one foot tucked under her bottom and an arm thrown over the back of the couch. I had a feeling that given the opportunity, I would not hire her even for a babysitter. I also found that this agency was loosely run and did not really have good operating standards. The staff was late for meetings, which they had called at their own office and they were forgetful of important details. Papers were lost and sometimes they called Charlie by the wrong name. I just saw red flags and canceled our services with them.
I contacted a different agency before giving up (which was my initial impulse). This meant driving Charlie over an hour to their office for an evaluation. The trip was fine and the office was well-organized and the staff was professional. I didn’t know who our TSS would be, only that she was new and excited about working with Charlie. After meeting her, I knew that she was the one for Charlie. She was great from the beginning. Her name is Amber. Charlie is so lucky to have her.
Amber, from the beginning, took an approach with Charlie that worked well. Many other therapists, even dating back to the Early Intervention Program, who worked with Charlie would chase him from room to room to get his attention. Amber brought cool toys and let Charlie come to her. Very soon Charlie attached to Amber very well and now they are a great team.Amber began working with Charlie before he started our town preschool and integrated herself into his life so well that she has just become another person in his life that he accepts as well as any of his siblings or even us, his parents. Amber is just part of his life.
The plan was that Amber would accompany Charlie to the local preschool classes and help him interact with the kids and teacher. Wrap-around is not allowed to go to the Intermediate Unit school, because this would be considered double-dipping by the State, since behavioral services are already provided at the school and the school is funded by the state. Amber did go to the school on her own time to observe their program and see what they were doing with Charlie. Having Amber with Charlie at Ms. Kitch’s school would be crucial for Charlie, without it, it would be sink or swim. I felt he would sink without her. He was just not able to be without this support. If I could I would do it for him, but he would at least had an helper all to himself.
We are fortunate to live in a small school district where the administrators know the kids. Also, Chuck is a physics teacher at the district, and being an employee helped place us on a first name basis with the folks up there. We were able to speak to the school administration well before Charlie’s placement in Kindergarten. In fact while he was still in the developmental preschool, and line up our options for the town Preschool and later, Kindergarten. They seemed to be excited to have him. This is important for me, because I need to look ahead and make plans. That’s just me. Just a trace of obsessive/compulsive. I don’t think that they treated us any differently than they would another set of parents, but it made it easier for me to interact with them, because I knew them already.
The administration told us that they could offer a full-time aide for Charlie, in case at some point the state stops the TSS funding. They were willing to help him stay afloat in a regular classroom with learning support offered throughout the day. They are able to provide him with assistive technology when it is required, and they made plans to set up a sensory room for Charlie. Charlie would be the only child with autism in the lower grades. There is one other child with autism in the school, but he is older. There are less than ten kids overall who have major disabilities in the district.
So Charlie began the year with Ms. Kitch and Ms. Ginette. I have to talk about Ms. Kitch’s class because her class changed Charlie so dramatically. Charlie was already used to her class because Jonathan had attended two years before. Every afternoon we would walk him to and from school. Also, the WIC program was located in that building on one day a month, when school was not in session, and we went every two or three months to get Charlie and Rachel’s WIC vouchers for milk, cheese and cereal. So he already knew and liked the classroom.
This was the first time that Charlie was involved with other kids who lived in town. Basically he had friends for the first time. One of these children, Holden, lives across the back yard, just over the fence from us. Charlie and Holden were able to play together once in a while. When we saw kids walking past the yard Charlie would get excited because he knew them. Many times he was so excited that he could not get out the words, “Hi, how are you doing?” He would just run around excitedly, like a little wind-up toy.
He loved going to school every single day and all of the things that I was so worried about never materialized. That is not to say that things were all smooth sailing. Other things came up that had to be dealt with. Sometimes Charlie would decide that it was time to go potty and would begin pulling his pants down as he was making his way to the bathroom and the kids would giggle. Fortunately, Amber was able to extinguish that behavior.
Charlie did his share of screaming, but as the year progressed he did that less and less. One funny thing that happened is that when Charlie was six, he was invited to a birthday party for the first time. His friend Gavin was having an outdoor party. Gavin sat by me where Charlie and I were playing at the sandbox. Gavin asked me if I could make Charlie scream. I asked him why he would want Charlie to scream. Gavin said, “I LOVE it when he screams!” I got the idea that Charlie was doing in class what a lot of the boys secretly wanted to do and they got a little thrill that at least someone got to get away with it once in a while.
Charlie was snack helper on occasion, he walked around the classroom and gave out the snacks and the paper napkins. He loved being a helper. Charlie loved it when they would have circle time and the kids would tell “news”. This is when kids would say what was happening with them. Ms. Kitch would write on the board, “Charlie Says, ‘I have a truck’” or whatever the kids happened to have to say. At one point during the year, I was working on the computer and Charlie came up to me and said, “Tessa said,… I began typing that on the keyboard and Charlie watched the words appear on the screen. He kept saying words and I kept typing. I knew there were words that Charlie could spell, such as his name, but when I moved back and let him to type, he was able to write a lot more, by finding those letters on the keyboard and typing them out. I was amazed. I gave the list to Amber the next day. I think she was also stunned that he was able to spell so many words and put into words phrased that he was not able to verbalize.
Charlie made some very strong friendships. He especially liked the girls. There were two, Tessa and Abigail. If Charlie had a hard time getting up in the morning, I would say, do you want to go see Tessa and Abigail? He would be out of bed in a flash. Aren’t friends great?
Charlie was also doing very well in Ms. Ginette’s class. Toward the end of the year he wanted to lead the circle time, he would sit in Ms. Ginette’s chair and pretend to be her. He would tell the stories and lead the songs. I could hear the pride in her voice when Ms. Ginette would tell me what Charlie had accomplished recently.
Charlie went through his year of dual preschools and finally the time came for graduation. It was a real tear jerker. He finished both programs so well. He was now speaking in full sentences all the time. He still was not communicating back and forth, but as far as expressing needs, he was doing well.
We still had Amber with us during the summer days. She kept up working with him, teaching him to control his behavior and taking him out in the community. He learned to ask other kids at the park to play with him. He learned to walk through the store without bolting and grabbing things off of the shelves. He learned to ride in the car better than we ever thought he would be able to do.
We did have some problems. Because of the reinforcers, sometimes we would feel compelled to take him where he wanted to go, or do what he wanted to do, because he was phrasing a question and we didn’t want to say No. Finally we learned that we had to say no. Charlie had become what is called a Manding Monster in the Verbal Behaviors program. Meaning that he was being taught to ask for everything. Unfortunately, in the real world you can’t have everything. So, we had to begin teaching him that not every time that we go into town will we go to McDonalds and get a toy. It was hard and there was a lot of screaming, but he learned to sometimes take no for an answer. And we also learned that if we tell Charlie in advance what is going to happen we can avoid problems.
We would say, “Charlie, first we will go to the drug store, then we will go to the dollar store and get a toy.” At that point Charlie could wait for the toy. Eventually I introduced the concept of “We are going to the store and I am not buying a toy today.” Sometimes he is ok with it, sometimes not. But he does understand it.
Now that he could ASK questions, we began working on answering questions. This is harder for kids than asking. Who, what, and where are hard concepts to learn. How is really hard. “How Come” is a phrase that is used a lot and it doesn’t make an sense to Charlie. It was a long process, but now he is able to ask and answer questions that are needs based. If I ask, “What would you like to eat?” He can answer. Prior to this I would say “Eat?” And he might answer with a word, sometimes he might take me by the hand and show me what he wanted. He is also able to ask me, “Where is the car?” As time goes by we are teaching him Why and How questions. I have no doubts that he can learn those concepts, but sometimes it is a matter of trying to teach a concept and if he doesn’t get it, then waiting until later in his development, maybe a couple of months down the road and trying again. The only failure is to assume that if he can’t learn it at six than he can never learn it. We just keep plugging away.