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.

Transitioning to High School with Autism

My son Tate is a freshman in High School this year. We are two weeks in and I am breathing a bit easier now. He’s surviving. Transitions can be hard for people with autism. I worried about everything. How would Tate manage the huge transition to High School? How would he manage all the smaller transitions from one class to the next, in a hall crowded with so many other students? Those kinds of things are so much harder for Tate than they are for you and I. On Tate’s second day of school, his older brother ran into him in the hall. Literally. 

Tate’s brother has since seen Tate in the school halls, and reports that Tate has mastered the skills necessary to dodge most of the other students now. Whew!

That first week was a bit rough on Tate. He was exposed to some ideas he could hardly believe. He came home distressed because his choir teacher mentioned the wearing of robes at the scheduled performances. Luckily, she was most understanding, compassionate and accommodating when I explained Tate’s sensory issues and his anxiety about things like this. 

In addition to the anxiety felt by Tate, and all the new routines to learn, there is also a learning curve for Tate’s new educators. Each year as new teachers get to know Tate and his quirks, I worry that Tate will be misunderstood or even mistreated because of his lack of social awareness and socially acceptable responses. Will his teachers understand autism? Despite my fears, Tate is adjusting marvelously. The High School teachers are proving to be as proficient and as understanding as the teachers we left behind in Junior High.

Working with Tate requires patience and a sense of humor. Luckily, the Physical Education teacher is demonstrating that he has both when he teaches Tate. Despite Tate's awkward gait and limited coordination, P.E. has always been one of Tate's favorite classes at school. I wondered if High School P.E. would be very different. I have always heard that much of the bullying that goes on in a High School is done in gym class. After just these few days I can see that Tate likes his P.E. class very much. The fact that there is never homework, helps!

Tate does not believe homework is ever justifiable. Since he first entered public school he has been adamant that schoolwork should stay at school where it belongs.  

Tate's attempt at his report was his personal best. I read it with mixed feelings. Things like this show me just how far behind Tate is. But they also show me how far he has come. It is true that Tate cannot perform academically at the level of his peers. However, I can honestly say that I am every bit as proud of his efforts as any other parent. Tate works hard and does the best he can in a world he has trouble making sense of. He shows me daily what it means to persevere. It sounds a bit cliché but it is a fact: Tate has taught me far more than I will ever teach him. He makes my heart smile. 

Get to know a child with autism. You will be forever changed in ways you could not have imagined. 

If you liked this post, you might also like: Coffee Tables Aren't Hot

or this one: There is no ham in hamburgers

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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.

Sydney, Age Six

Once in a while something triggers an old memory that I had all but forgotten, something I would have blogged about back then if I had been blogging at the time. Tonight a comment from a Facebook friend triggered one of those memories. I will always associate this Facebook friend with this particular event.... It was the last day of first grade for Sydney, which coincided with the closing of our small community’s school. It had been quite a year for everyone involved in the education of Sydney as we all tried to manage her behaviors that come with having Fetal Alcohol Syndrome (FAS) and Attention Deficit Hyperactivity Disorder (ADHD). Sydney’s first grade teacher was extremely talented and had taught much of the year with Sydney wrapped around her legs, literally. Sydney’s teacher and I had asked many times for increased services for Sydney without the results we hoped for. Through no fault of her own Sydney was not able to behave herself. There was no keeping her in her seat. She spent most of her day wandering the room and pestering the other students. There was no amount of discipline and no incentive program that could help Sydney control her impulses at the age of six and she was not yet on a medication that made a real difference.

 

That last day of school there was to be an assembly to hand out awards, recognize students and staff, and say goodbye to our small community school. Emotions were running high and tears were flowing. Patrons were both sad and angry because our school was closing. A large crowd gathered in our small school’s gymnasium. Teachers were seated in chairs at the front of the crowded building, while approximately eighty students from grades one through five were seated on the floor. Parents and community members sat in rows of chairs or stood, and the speeches and awards began. Almost immediately Sydney began to wiggle and I began to sweat. What were they thinking sitting her in the midst of all those children without an adult? Sydney’s wiggles turned to bouncing and swaying back and forth. Next, she was putting her hands on the children close to her and trying to engage them in a regular game of tag as they swatted at her like a gnat that could not be dissuaded. I was sick to my stomach. I could not reach her or get her attention without creating a bigger scene than she was making. The teachers were also unable to get to her easily without moving a lot of students. Then, just when I thought I could not be more embarrassed, Sydney began crawling around, weaving in and out of the children, distracting them and causing them to have to shift and move as she crawled around them and over their laps. The seconds felt like minutes to me and I shifted in my seat unsure of what to do. I was wishing the floor would open up and swallow me. I recall hoping that everyone was remembering that I had six OTHER children that DID know how to sit still and they were not judging my parenting on the behavior of my youngest child. I desperately wished I could whisper to the person sitting next to me, “Remember, Sydney was neglected for the first year of her life and she has many excuses for her behavioral issues. The Smiths are really good people. Pass it on.”

I was hoping that Sydney would eventually crawl over to the edge of that crowd. Maybe an adult would be brave enough to grab her and put her in a headlock until I could get out of the crowded seating where I was confined and take possession of my little angel. But as luck would have it, Sydney wormed her way further and further from me, toward the front of the gym jostling children all along the way. And then she was UNDER the chairs the teachers were sitting in, slipping between the legs of one chair after another, right up front where every eye was focused. If anyone had missed Sydney’s performance amongst the children, they surely were not missing it now. I cannot remember now how many adults tried to coax Sydney out from under their chairs as she squirmed her way down the line. The librarian, Lisa Myers, who had a great relationship with Sydney and genuinely liked her for who she was, lured Sydney out from under the chairs and onto her lap. While I was trying to teleport a message to Lisa that went something like, “Get a vice grip on her or she’ll squirm right out of your arms and escape!” this gentle lady was holding six-year-old Sydney lovingly, cuddling her, whispering softly to her, rubbing her back, smiling down at her with genuine affection, and keeping her calm and quiet. When that assembly was over I couldn’t get to Lisa fast enough. I thanked her and I have thanked her again since that day. Lisa did not just rescue the children that Sydney was distracting that day. She did not just help the adults to refocus on the speaker instead of focusing on the chaos my little girl was causing. Lisa showed me an example that I will never forget. She picked up a child that many of the adults in the room (myself included) probably wanted to take out and paddle. And instead of frowning at her, sternly talking to her, or telling her how disappointed she was in her behavior, Lisa lavished Sydney with affection and smiles.

There are two morals to this story…

The first being: The adults in Sydney’s life have often expected more of her than she can give. That day we sat her in the middle of a crowd of children, without an adult to directly supervise, or medication, and expected her to behave like her peers. When Sydney was unable to behave as her peers, I became embarrassed and I was ready to punish her, or at the very least lecture her. Sydney was doing the best that Sydney could do that day. Lisa recognized that. I love the quote by Albert Einstein, “If you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

And the second: Lisa did not know how deeply her kindness toward Sydney would touch me. We can be sure we have influence on the people around us. Whether it is good influence or bad influence is for each of us to determine. When we leave our homes each day we do not know what kind of lesson we might teach someone. You never know who is watching and what impact your example will have on them. The ripples in the water sometimes go far. It takes only minutes to create a great long-lasting memory. It also only takes a minute to wreck someone's whole day or worse. 

So there you have it. The old memory was triggered yesterday when Lisa told me that my kids reflect my hard work on their behalf and that I am a great mom. What she did not know is this: Once in a while when I am ready to throw my hands up in the air, jump up and down, and holler at my little ADHD princess, I think of Lisa and how gentle she was with Sydney that day and instead of the jumping and hollering I am able to pick her up and hug her instead.

For more about Sydney, read Teaching Sydney (Or Trying To)

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