Tate's a Freshman, Part 2

My son Tate has autism. Tate is a freshman in High School this year, and is just beginning the second quarter. At this point, his teachers have gotten to know him and his quirks, his abilities and his inabilities, some of his anxieties and obsessions, and just how much fun he is to have around.

This is the second in a series of posts about Tate's freshman year of High School. You might like to start with the first. If you haven't already seen it, click here: Transitioning to High School with Autism

Last week I attended parent/teacher conferences. I always go to meetings with new teachers with just a little trepidation, hoping they “get” what autism is and how to best communicate with Tate. 

I got to hear some really fun stories about how Tate is settling in and how his teachers this year have come to enjoy him. And I got to hear the other side of a few of the things Tate has come home and told me about. 

One of my favorite stories was about World History class. Tate really likes his World History class. Or at least he likes the projector that hangs from the ceiling.

And Tate is excelling in math this year.

Although Tate’s math teacher had nice things to say about him, Tate is unsure she really knows much about math at all.

The math teacher is not the only teacher who has given Tate new notions to ponder.

This is the first year Tate has had no organized lunch buddy program. He is doing well on his own. One of the teachers he had in Junior High sat with him while he ate lunch recently.  

Lunch was not the only concern I had about Tate being in High School. I worried about his ability to maneuver through the crowd. Choreographing his movements to those around him is difficult for Tate. They tell me he is colliding with others less frequently now. Tate's size is intimidating enough that he will likely never be hurt, but I do worry about the other guys.

Not many kids like homework, and Tate is no exception. The name “homework” itself annoys him. If it is schoolwork, then it should stay at school. It baffles Tate that schoolwork can be brought home and relabeled as homework. He does not like his two worlds to mix.

If you like reading about Tate, follow us on Facebook at Quirks and Chaos.

The Transition to Public Special Education

Tate is having wonderful experiences at school. He likes school and that is so important. But that has not always been the case. Once upon a time, he cried almost every morning before school. School was very stressful for him. He had a lot of needs that were not being met. He could not communicate his needs. Anxiety ruled him. It was hard on him and it was hard on our whole family. Because when Tate is unhappy, we are all unhappy.

When Tate began kindergarten he had come straight out of early intervention. He began Applied Behavior Analysis (ABA therapy) before his third birthday and we aimed for forty hours a week of discrete trial. Incidental teaching was used throughout every waking minute, trying to turn his whole day into one learning experience after another. We were trying to “catch him up” to his peers and get him kindergarten ready. We did the ABA with experts in the field of autism and the price tag was huge.

I knew there might be some issues with the public school immediately. One reason being-- I had called the public school and inquired about their preschool program. I also asked about the district’s ability to provide Tate with some services for our in-home ABA therapy program. The voice on the other end of the phone told me if I had determined ABA therapy was best, I had been reading all the wrong books. I knew ABA therapy was the ONLY research-based therapy at the time. So my first impression of the special education director and the program was not good. I did not contact the school district again regarding Tate’s education until he was ready to start kindergarten. We had an IEP meeting so Tate would begin school with paraprofessional support. It was evident from our first meetings the special education providers and I were not going to agree on what an appropriate education for Tate would look like. It did not get better for a long time. I had set my expectations high and I was sorely disappointed. I was also shocked. Tate has five older siblings and I had NEVER had any complaints in the past about our children’s education. I had a lot to learn about the difference between general education and special education.

Tate at his early intervention program

I had a lot to learn about the difference between private early intervention and the public school’s special education program too. There were few similarities. When I had questions about autism or challenging behaviors while Tate was in early intervention the staff had answers. Those first few years of public education I saw little evidence the ones providing Tate’s services understood autism.

We had some unforgettable experiences those first few years of public education. When Tate was six, one day he used his pencil to pretend. He pointed it at his paraprofessional and said “pow pow.” The para mentioned this to her supervisor. That teacher took Tate to the principal’s office. She asked if the incident should be reported to the police as the school had a zero tolerance for threats. Tate was six. He has autism. He was holding a pencil. And he was made to feel like he had done something bad. In his early intervention program it would have been celebrated. Pretending! Object Substitution while pretending! This was huge! The autism expert from Tate’s early intervention program would have written me a note or called me to tell me the great news. In the public school setting he was taken to the principal. Luckily the principal was a very reasonable man. When he told me about the incident he was smiling and assured me he never even considered making that call to the police.

Tate at Kindergarten

One phrase I heard often when I made a request for a service was, “We’ve never done that before.” Social skills coaching on the playground was one of those things they’d never done before. The argument against it was that Tate needed free time on the playground to do whatever he wanted. He would have paced and stimmed. I did not want those precious teaching opportunities wasted. The consultant / advocate I brought with me to our meetings argued for the coaching. In an effort to convince me Tate did not need coaching on the playground, the school district brought in their own autism consultant. The plan was for her to observe Tate for a few hours and then give some recommendations. (My own consultant had worked with Tate for years and knew him well but they wanted someone to observe him for a few hours and make recommendations.) I asked if I could be present to hear the consultant give her recommendations when she was through with her observations. Even that was a point of contention, as some did not seem to want me present. Thankfully, the principal called me and told me when the meeting was about to convene and I lived one mile from the school so I was able to get there and hear firsthand what was said. I will never forget what I heard or the looks on faces that day. That consultant agreed Tate needed playground coaching. AND she recommended even MORE social skills coaching than I had asked for be incorporated into his school day. I smiled all the way home that day. The suggestions made by the district’s consultant were not implemented in full but I am quite certain they would have gone with her advice had she said Tate needed LESS services. No one argued with me about the playground coaching much after that. For every battle I won though, I lost two.

We fought many other battles as well. I asked for Tate to receive a warning before he was to have a substitute teacher. I understood it would not always be possible and I know sometimes people become ill right before school begins. However, if a teacher had scheduled an absence and I could give Tate a warning before he walked into a room with a stranger in charge, it made a world of difference to us at home. Tate’s anxiety level after having a substitute was often high. I asked. I begged. I demanded. This became a real problem and no matter how many times I explained the need it did not seem to matter. General education teachers would willingly tell me when they were going to be absent. But the special education staff rarely seemed to be able to get me that information. The time that mattered the most was once when Tate had a gift to give a special education teacher before the holiday break. He took it to school two days before the break only to find a substitute. The secretary told me the teacher had scheduled time to be off long before that date. He was so hurt. If the goal was to show me who was “in control” then I was shown. Often. There was nothing I could do. I saw over and over that one person could ruin Tate’s day and ruin our evening. One person.

Para professionals and I often had to communicate in secret if we had information we wanted to exchange because I was not allowed to talk to my child’s paraprofessional without their supervisor present. I know what you are thinking. It was a ridiculous rule. It was a hindrance to everyone involved, especially my kids. I was told I could not even say, “There is a Chapstick in Tate’s pocket” to the paraprofessional. The special education director could not be moved no matter how many times I appealed to her. Despite the rule, the paras and I found ways to communicate when it was in Tate’s best interest. On two separate occasions I received phone calls at home in the evening from two different substitute teachers I’d never met. Both had been subs for Tate’s para. Both wanted to tell me something that had gone on at school they felt I should know about. Both had been told they were not to talk to me. They did anyway. Not that I was able to do anything about the problems they discussed with me though.

I came away from that first experience with my district’s special education department disheartened. It has taken me years to recover and be able to fully trust my children’s IEP teams. We have wonderful teams now and are very satisfied. The differences are amazing. My faith has truly been restored.

I learned some really valuable lessons and made some valuable observations those first years.

1.     One person can make or break a child’s education. One person.

2.   When your special needs child is miserable at school, the whole family is affected.

3.   The words “Promote independence” are spoken with a smile by educators, but those words are code for “reduce services” and a parent should not be fooled. Of course everyone’s goal is for a student to become independent, parents included. But not prematurely and not to save the district money.

4.   If the school wants to amend the IEP to “promote independence” and promises the services being reduced “can always be added back in later,” it will take an act of Congress to get those services back. Parents should not allow themselves to be coerced or pressured into signing anything amending their child’s IEP to reduce services.

5.   The law says a child’s needs must be met. So, in theory if there are ten children who need XX for one hour a day and only one person who can deliver XX, working eight hours each day, the district is obligated by law to hire another XX provider. In reality what I believe happens is the children who needs the XX the most get the XX and the children who need XX the least do not get it, OR the eight hours is split between the ten children. But an additional provider of XX is probably not going to be hired. The law is often ignored but dollars carry a lot of weight.

6.   Privacy policies can be a real detriment to a child’s education and safety. Privacy policies keep substitute teachers and many others from knowing about a child’s disability, needs, behaviors, treatments…

7.   Not every educator is good at his / her job.

8.   Tenure protects bad teachers.

What I Say to Future Educators

I am sometimes invited to speak about special education and my two youngest children to a class of college students who are going into the field of education. I got to do that yesterday. I believe this was the fourth time I have done this with this particular college professor. I did a couple similar talks several years ago at a different university and I have given a couple short talks about early intervention at autism conferences. The class yesterday was two hours. I usually get through it without choking up much and what I talk about is sort of becoming “old hat” so it goes smoothly. This time I choked up a little more than I have in the past. I have a harder time talking about the kids’ futures than I do their pasts and there were some questions this time from the students about future plans. I just don’t know what the future will look like for these two precious kids. Tate and Sydney won’t be safe in a world where people take advantage of other people. I don’t anticipate them ever being able to manage money or understand the value of money. They are both very eager to please and trusting of anyone that looks their way. Teaching “stranger danger” is not something that is possible. Job skills and opportunities will be limited for both of them. It is scary and depressing. 

Those thoughts still swirling in my mind, and a rougher-than-usual morning with Sydney today have left me emotionally exhausted. So… my therapy will be to blog.

I do enjoy speaking to the college kids and I feel it is very important to raise awareness. These future teachers need to understand just what they will be facing and I hope I help them understand the difference they can make to a family of a child with special needs. 

I always want to tell the class about early intervention, the huge difference it made for Tate and Sydney, and the cost that came with it. I want the students to understand how vested a parent is in their child and his wellbeing. We parents have often spent all our savings and mortgaged our homes in our efforts to give our special needs kids all the advantages and therapies there are to offer.

Then I tell the students about the first experiences we had with the public schools. I handed my little guy over, kindergarten ready (academically, not socially) to some of the most wonderful general education teachers I have ever had the pleasure of knowing. But then I tell about how disappointed I was in the IEP process. 

I watch their mouths drop open when I tell a story about a time when Tate was six and held his pencil up and said “pow pow.” He was taken to the principal. There was a zero tolerance policy for threats and violence. Because kids with autism do not often pretend, this whole event should have been celebrated as  progress. It would have been celebrated by the autism experts I had surrounded Tate with for his early intervention.  Instead it was blown out of proportion and a little boy who did not have the receptive language to even understand what he had done wrong, was made to feel badly for pretending.

I tell the college class about the time Tate’s IEP contract was broken because a new student who was much more handicapped than Tate, needed his para support worse than he did. He was on his second day without support when I found out about the situation. There was no substitute called for and no plans to hire another para I was told. Tate’s IEP called for “support throughout his day, from drop off to pick up.” When I asked why I wasn’t told he would no longer be receiving the contracted services, the response was, “It never occurred to me that you would want to know.” Yes, the college students’ mouths drop open again. I tell them about the fit I threw in the principal’s office and the phone call I made to the director of the special education program for our district. I tell them about the substitute para that showed up at school a couple of hours after the fit I threw and how she was kept until the end of the school year so Tate did not have to share his para or be without a para again. I tell them how upset a mom can and does get when her child is not safe and not receiving an appropriate education. 

The question was asked yesterday if Tate goes to summer school. I told the college kids the following story and once again saw their disbelief. I asked for an “Extended School Year” (ESY) every year and was told that he did not qualify. Per law, he would have to lose more over the summer than he could regain in the first nine weeks of school. I asked how that was measured. They would need data. I asked for them to take the data. We got the data and it did not prove that Tate lost more than he could regain in nine weeks.  So, he did not receive summer school. Now, here’s the unbelievable part… After four years of being denied summer school by this special educator, a new teacher asked me why Tate had never attended summer school. I scratched my head and explained the “law.” It turns out, that the district policy is that any child can have ESY that is recommended for it by his teacher. Tate has since been going to summer school. He could have made much more progress those first years in public school with a whole team effort.   

I ALWAYS make sure the college class knows the difference one person can make on an IEP team. I talk to them a lot about how important communication is between home and school. I tell them about the amazing team Tate has now. He is happy and doesn’t cry every day before school like he did most of those first four years. I trust Tate’s special education teachers now and we are a true team, openly communicating often and providing each other with lots of information that helps Tate to be successful. ONE TEACHER CAN MAKE A HUGE DIFFERENCE IN THE LIFE OF A CHILD AND IN THE LIVES OF THAT CHILD'S WHOLE FAMILY!!! One teacher can set the tone for whether or not the child will have a successful year or a year of misery. 

Figurative language always comes up in these sessions with the future teachers. I talk about how hard it is for a child with autism to understand idioms, metaphors, clichés, and words that have more than one meaning. I try to explain the concrete mind of a child with autism and the need for simple, clear instructions. I talk about how easy it is for a child with autism to misinterpret instructions. I illustrate the need for sameness by talking about routine and giving examples of how something like having a substitute teacher could ruin Tate’s day. I talk about sameness being so important that Tate has taken the same lunch everyday for five years: a peanut butter sandwich (no jelly), a baggie full of chips, and two cookies. I tell of the day the chips were somehow left out of his lunchbox and the fallout that had to be dealt with. I explain what a melt-down looks like and how it escalates. I talk about how great and wonderful and smart my kid is.  

It is so hard not to make my kids, the kids I adore, sound like burdens when I talk to these classes. I try to remember to talk about the positive characteristics my kids have. However, the purpose of the parent panel is not to make our lives sound rosy, but to talk about what the future teachers will likely see in kids like mine and how to best handle them, from a parent’s perspective. 

I talk more about autism than I do Fetal Alcohol Syndrome (FAS) for a few reasons. I know a lot more about autism than I do FAS due to the information available. One in 54 boys are now being diagnosed with autism and the stats are not nearly as high for kids with FAS. So, the college students will probably see and deal with a lot more kids with autism than the do kids with FAS. And, Tate has been with me eleven years and Sydney eight so I have a few more Tate stories than I do Sydney stories. 

Before I began to talk about FAS last night and my precious Sydney, I took a moment to beg the young women in the class, not to ever take a single drink while they are pregnant. Then I explained why.

I always try to describe the hyperactivity and the lack of impulse control but I’m never sure I do it justice. On one hand Sydney is hyper-vigilant and you cannot get anything past her, but on the other hand she cannot stay focused long enough to learn, without her medications. I tell them of the constant “pestering” and the “space invading.” I speak of the never ending talking that Sydney does and her inability to sit still without the help of her medications. I tell them about the lack of friends and then I choke because I know there may never be friends. Who wants a friend that makes you work that hard? Yesterday, as I took a deep breath to recover my composure, the class professor stepped in and told of other children she had seen in classrooms over the years. She likened kids like Sydney to a buzzing fly that the other kids cannot swat away. It always comes back, and when you are eight years old, you do not know how to nicely say, “Get lost, you are bothering me.” It was a great analogy. I love that little fly but her peers do not and will not.   

I explain to the class that I was a mother totally reluctant to medicate my child in the beginning and now I have done a complete turn around. Before the medications, Sydney couldn’t learn. She struggled to learn her colors. She couldn’t do simple one-piece puzzles or a shape sorter. She couldn’t count or learn her letters. The medications slow her down physically, help her to focus, and now she can learn. I say to the class, “Sydney’s medications have changed our lives.”  She is reading at grade level and her comprehension has recently caught up to her peers as well. I have to admit though, there has been no headway made in math. She stays in kindergarten math, never showing any progress, although I am certain her teachers are working diligently to change that. 

As I left the classroom, many of the students thanked me for giving of my time. No thanks was necessary. Any hope at all that I made a difference in how they will treat their future special education students is thanks enough.