Transitions and Junior High on the horizon

Most of my readers are moms. I get a little feedback from time to time, and except for my own grown kids, almost all the comments, messages, and encouragement I have gotten are from my peers. I know I have some readers that have special needs kids, similar to Tate, but to date, most of my readers are moms of typically developing children, many fully grown. I thank you for reading. If you are reading and have any questions about life with autism, just leave me a message. I probably have an opinion I would share. I’m no expert on autism, but I am an expert on Tate.

It’s all about raising awareness. If you understand just a little bit better why that kid (or adult) you saw in the grocery store was behaving so oddly, then my blog served its purpose. If you smile and say hello to the kid (or adult) that has their head down and you get them to look up and respond, then my blog served its purpose. If you are able to have a talk with your children or grandchildren and ask them to be patient with the special needs student in their class at school, then my blog has served its purpose. I beg you to raise your children to be kind to kids like mine. 

Today’s post is about transitions. If there is a word that strikes fear into the heart of a mother of a child with autism, “transition” is the word. If you live with autism then you already know what I mean and you are already smiling or nodding your head. People with autism do not like their boat rocked. For them, “sameness” is safe and solid. Change is frightening and takes much longer to adjust to than it does for you and me. 

When they are toddlers, even the tiny transitions will bring on a tantrum or a panic-attack for your child, thus making everyone in your child’s world miserable. When Tate was very small, a diaper change was extremely painful for him (and me.)  Back then I had no idea what autism was or what could be triggering the huge reaction I got when I had to change him. I’d never in my life heard of “sensory” issues. I became the fastest diaper changer in the Midwest to minimize the amount of time he would have to be uncovered.  Bath-time was even harder. I had five children before Tate who quickly outgrew their fear of baths at infancy, and learned to love to splash and play in the bath water. But Tate hated baths, long past infancy. Then there was the car-seat. He hated to get into it and he hated to get out of it. Changing out of pajamas in the morning and into clothes was always a battle. But then, when it was time to get back into those pajamas at night, the clothes were preferred. He carried the pajamas around with him in the mornings, crying for me to put them back on. I just didn’t “get it.” I stopped using pajamas for Tate and just put him in a fresh set of clothes before bed that he could wear the next day, thus eliminating one of the clothing transitions of the day. All those small transitions were hard on us. However, they were minimal compared to the bigger transitions. Season changes, the need for new clothing or shoes, new bedroom furniture, moving the old furniture around, new paint on the walls, buying a new car, having house guests, all these things were no small thing for Tate. These things had to be planned for and handled with great care to minimize the distress Tate would feel. 

I have blogged before about shoe shopping. A new pair of shoes to Tate was something like a root canal would be for one of us. He was miserable for days and carried the old shoes around with him, so unhappy. I learned to buy two pair at a time, one a size bigger, so when he outgrew one pair it was a little easier on him to transition to a bigger pair because they were so much like the pair he outgrew. Going from shorts in the summer to long pants in the fall was not easy on Tate. Suggesting he wear crew socks, instead of no-show socks was met with shock.

I hear people say that kids with autism don’t feel comfortable in their own skin. I’m not sure what that means exactly. I don’t think that is a good analogy for what Tate feels. He does seem comfortable, in his own skin at home, in his own environment, moving around the house, and transitioning at his own pace. As long as no one is making demands of him, we see very little stereotypical behaviors or anxiety. He does seem to feel comfortable in his own body, but not in someone else’s idea of where his body should be or what his body should be doing.    

Two years ago our rural school was closed. I knew THAT was a transition that was going to be HUGE for us. I avoided telling Tate about it. When Tate heard the kids in his class talking about going to a new school, he became so anxious about the transition he made himself sick for a few weeks. He never sleeps well but he lost even more sleep. He had struggled with staying dry at night for years and had been doing better but his bed was wet every night after that. He went to bed anxious and he woke in the morning anxious. He paced the floors on his toes, bouncing as he walked. This is a stim we see when he is very excited or very worried. 

The anxiety over the new school made shoe-shopping look like a piece of cake. We got through the transition to the new school by making several visits to the new school, taking pictures of the building’s rooms and staff, and meeting some of the teachers. I tried to anticipate all the things Tate would have trouble with and address those issues before they became issues. Over the summer we went to visit the school. I did not start Tate on the first day of school. I asked that his fellow classmates be educated a little bit about autism and Tate specifically before he began class. I asked that every adult that would interact with Tate be told about his diagnosis. Did you know that privacy laws prevent the teachers from telling their substitutes about a child’s handicap? Did you know that privacy laws do not allow the music teacher, PE teacher, art teacher, janitor, lunch ladies, and secretaries, ect. to be told of a student’s handicap? (See my blog post called "Privacy, hiding the diagnosis or hiding from the diagnosis?" from May 2012.) I had to make sure that it was in Tate’s IEP that any adult who worked with him, including substitutes were told of his autism. It is very important that people know of his diagnosis so he is kept safe. 

Tate is in the fifth grade and that is the last year of elementary school in our district. Next year he will be at the Junior High. This time around, Tate’s transition will be huge. However, with maturity and past experiences under his belt, and a Resource Room teacher who is helping us with it (something we didn’t have with the last transition), he may just come through this unscathed. I am still anticipating problems and trying to eliminate them before they happen but things are looking pretty good. Tate has already had his first visit to the Junior High. I wanted his two worlds to be joined together slowly and cautiously and everyone has been very understanding and cooperative. At the current school, the school secretary is a huge part of Tate’s world. She participates in his social skills lessons and is always ready for a “conversation” with Tate. I’m sure it is not in her job description but she is an amazing and caring person who loves kids in all shapes and sizes. So, in an effort to make sure Tate is comfortable at the Junior High, the secretary called ahead and described the role she plays in Tate’s life to the Junior High secretaries so they could step in. They are willing and ready. 

I’m hoping we can keep some of the faces familiar but para support does not follow students in school moves usually. This may be somewhat stressful for Tate. Class moves will be stressful and I anticipate a battle having to be fought over how Tate manages the halls in a crowd. He will need an adult to help him with those transitions. Yes, there is that word again. Unless you live with autism, you may not ever understand how that word can make my heart skip a beat. We wouldn’t put a second or third grader in the hall full of junior high students and expect them to be able to navigate so I can’t imagine putting a child with special needs that functions at a second or third grade level into a hall full of junior high students either. 

I’ve been told that para support in junior high is so much different than it is in elementary school. Currently, Tate has a para that is with him most of the day and a couple others who step in for small amounts of time. This works very well. Tate knows them, and just as importantly: THEY KNOW TATE. He is hard to “read” and hard to understand. His paras now can see a meltdown before it happens. They can “read between the lines” when he is trying to tell them something and figure out what he is talking about. If Tate is expected to have a different para for each class next year then he will not do well. He will never really become comfortable with any of them and they will never really get to know him either. You see, each class move and TRANSITION from one para to another and one class to another will leave him feeling anxious and unsettled, thus setting him up for failure. 

I have many other worries about the transition to junior high and how Tate will cope. There will be six teachers (and possibly six paras) for me to educate about Tate instead of one or two. There will be much more lecturing involved in classes and Tate may as well not be there if the class period is a lecture because he cannot process language quickly. He will basically be using his day to stare into space and stim. Some of the subject matter worries me. For some reason, sixth graders in our district spend nine weeks studying the holocaust. I’ve had five before Tate and I always dread the huge holocaust projects. There will be posters and reports and books to read…. None of which will be productive for Tate. He needs to be studying things that are much simpler and easy to comprehend. Hitler is definitely not a person Tate will need to know anything about in his world. These are the battles I will be fighting as Tate transitions to junior high. If I push too hard to keep Tate from inclusion and studying things like the holocaust then he ends up in a room full of children much more handicapped than he is, thus ending his social education. If I push hard for inclusion then he sits in classes with students 3 and 4 years ahead of him intellectually and makes no real progress academically. What’s a mother to do? If you know anything at all about these kinds of things and would like to share, I’d love to hear what your experiences have been!   

He's my brother

In the past few days I have seen three beautiful stories about boys with autism, and the bond they have with a sibling. I was especially moved by a video I saw yesterday about a young man named Spencer Timme, whose older brother has autism. Here’s the link: http://www.youtube.com/watch?v=QHC0FzywHGY 

In one of my previous posts called “birth order and siblings have made a difference,” from May 12, 2012, I talked about how beneficial it has been for Tate to interact and be taught by his siblings. You can go to that post and read some specific lessons Tate’s siblings have taught him. Here's the link: http://quirks-and-chaos.blogspot.com/2012/05/birth-order-and-siblings-have-made.html 

Tate would definitely be an entirely different person if he did not have siblings. Spencer says in the video, “Not one person understands him the way I do,” I completely understand what Spencer is saying. Tate’s siblings know his quirks and what he likes and doesn’t like.  Understanding autism isn’t easy but Tate’s siblings have become quite the experts. Connecting with Tate is difficult. To communicate with Tate you have to be able to think like Tate. I don’t mean you have to have autism. I mean you have to think about what Tate is thinking about (or NOT thinking about) and understand how important the unimportant things are in his world.  His anxieties and obsessions are often in the way. If he is focused on an m&m that he dropped and cannot retrieve, you are not going to be able to talk to him about anything else until that HUGE problem is resolved. Eight hours later he may still be bringing up that m&m and you have to understand how important that lost piece of candy was to him. Minimizing an event like lost candy, while NOT minimizing the anxiety over the lost candy is like a tight-rope-walk. Tate lives in a very small world and he likes it that way. He doesn’t enjoy new experiences. He knows the name of a very few people and interacts with very few people. You have to be a very important person in Tate’s world before he will remember your name…or a cartoon character. He never forgets a cartoon character.  Ha!

Birth order plays a role in the way any child develops but being one of the youngest of seven has given Tate many advantages. His older siblings have helped him to grow and cultivate many of his skills. They push him to try new things and they often provide him with experiences he could not have had without them. They expand his small world by forcing new experiences on him. They bring their many friends and activities into Tate’s world too. Tate doesn’t always welcome these things but we don’t allow him to choose. If he were in charge, he’d never leave the living room and the television set, except to visit the kitchen. One evening this past week, Tate led our evening prayer and he asked God to “get Levi out of my life.” After the “amen,” we told Tate it was not kind to ask God to eliminate a brother, but we were all struggling to keep a straight face. It seems Levi had walked through Tate’s room a couple of times that evening to retrieve something and Tate had not taken kindly to Levi being in his room. Levi’s trespass was on Tate’s mind, and like the lost m&m, it could not be disregarded by Tate. Tate’s fury over Levi’s infraction is especially funny because the boys have shared a room for the majority of Tate’s life. Levi is never unkind to Tate and has taught Tate many things, but Tate has become very territorial about the bedroom. I suppose I can look at the bright side.  Tate is not anxious about being left alone in the room. He loves the independence.  Looking at the bright side is just another thing we have all learned, courtesy of Tate. 

Of course, Tate has one younger sibling, and that has advantages as well. Sydney is a great teacher. She and Tate are on similar levels in some academic and developmental areas right now. I know it won’t be long until Sydney becomes an “older sibling” to Tate, instead of a younger sibling though. She can already do things that he cannot. She communicates better than he does and her motor skills far exceed his. Today at school, Tate was asked to explain who Sydney was. Of course, the expected answer would have been, “She is my sister.” Tate did not give the expected answer. He said, “She is a kid from Russia.” Who else would describe their little sister of eight years as “a kid from Russia” but Tate? She was born in Russia. But, was “a kid from Russia” the RIGHT answer? Not really. It is misleading. Tate just doesn’t get the whole “communication thing.” In the first place, he probably did not understand WHY he had to explain who Sydney was because of the “theory of mind” thing I have blogged about before. He doesn’t understand why you cannot SEE what he sees and think what he thinks. He assumes that everything he knows, you also know. Therefore, why would anyone not know who Sydney is? In the second place, Tate doesn’t see the importance of developing peer relationships or having conversations and sharing information. So, he probably didn’t care if anyone else understood what he was saying or not. He was only attempting to have a conversation at all because it was part of a social skills lesson his mom and teachers insist he takes part in as part of his school day. Thirdly, Tate cannot separate the details from the main ideas. He gets caught up in trivial information. Instead of telling someone the plot of the story, he wants to talk about the tiny detail in one scene. We see this happen all the time and it is typical of people with autism. 

In the video, Spencer Timme says of his brother: “He has the ability to make everyone around him happy” and  “He makes me a better person.” I think Tate’s siblings would say the same thing of him. My heart swells when I see Tate’s siblings interact with him. He keeps us laughing. He makes us all so happy. He is sweet. He is funny. He has taught us all how to be better people. Who doesn’t need someone like that in his (or her) life? Who wouldn’t want to have a brother that helps them to be a better person?   

Update! Spencer made another video!
Spencer Timme's Second Video 

we have to "give them a clue"

A couple of days ago, I got groceries and had just begun moving them from the cart to the van when a young man came up behind me, very quietly, and startled me. I think I actually jumped. He was waiting for my shopping cart. He works at the store and wanted to return my cart to the store for me. It would have been much more convenient for me to stick it in the cart-return next to me when I was finished, but he thought he was doing me a huge favor by standing there and waiting. He didn’t SAY he wanted to return the cart for me. He just said, “hello” and stood and waited. I could tell he had autism for several reasons. He had the awkward gait, didn’t know what to do with his hands or eyes while he stood waiting, and he had a monotone voice. It was very cold outside and I commented about the temperature. He tried to have a conversation with me about the weather but didn’t really know how. I helped him like I would my son Tate, bouncing “the ball” back to him and asking concrete questions that he would know how to answer. He reminded me so much of Tate and how he would have conversed with someone. 

Tate with Melissa, one of his first
(and best) teachers. 

Last week, our good friend Melissa visited our congregation and worshipped with us. Melissa was one of Tate’s first teachers in his early intervention program. Tate so badly wanted to have a conversation with her. He tried with, “Hey, a church building is where you go to church.” Melissa replied appropriately then Tate tried again: “A few days ago, Levi did something.” Melissa said, “What did Levi do?” Tate said, “He fixed the game cube.” Then he sauntered away without properly ending the conversation. When Tate has a conversation with someone it is usually two exchanges with him pacing back and forth in front of the person he is conversing with, or bouncing in place. The church building is a great place for Tate to practice his social skills. After many worship services I grab Tate before he bolts from the building to sit in the car, and I tell him he has to visit with three people before he can leave the building. He hates it when I do that. He usually picks the same three people, so sometimes I tell him it has to be three people he doesn’t usually talk to. The poor kid. The poor victim he chooses too! Haha They are all great sports and give it their best effort. It is just hard to get him to make any eye contact or make much sense. I’ve turned my church family into speech therapists for Tate. 

The day after I had the exchange with the young man while I unloaded my groceries, I was in another store and saw another young man with autism. This guy was probably about 15 and was there with a teacher or mentor who was supervising him. I imagine the outing was a teaching experience or perhaps a reward for something. The teacher was doing a fantastic job of modeling appropriate behavior for the student. I did not gawk but I was in the same vicinity for quite a while so I listened. The student bounced on his toes when he walked, much like Tate does, and he had trouble knowing what topics were appropriate for conversation. He talked at length about his high score on “Bop-it” and he wanted to talk at length about a brand of bread that he didn’t often see on store shelves. I imagine the teacher was having a hard time keeping a straight face part of the time because the bread topic was so far out there. Tate does the same sort of things. He has no idea what is appropriate to talk about and what is not. He has no idea what kinds of things are interesting to other people and what things are not. 

Tate has announced to his peers at school before that he was going to take a shower when he got home and he sometimes tells his teachers he had a shower that morning. We’ve tried to teach him that other people don’t really care to hear about his showers. He recently tried to start a conversation by telling one of the staff at school that her skin looked old. She is a young woman, quite pretty, and she handled it very well but we all had a good laugh over that one later. A day or two after that incident Tate had a substitute in his classroom that was elderly and her skin was wrinkled. I was so worried about what their day was like. If Tate said anything inappropriate, I didn’t get to hear about it. I wanted to be a fly on the wall that day. On Veteran’s Day, the school invited local veterans to come and have lunch with the students. Tate walked into the office with his para, looked around at several older folk gathered in the office, and started to speak. Tate’s wonderful, insightful, wise para, quickly said, “Tate, think about what you are going to say, before you say it.” Tate said, “Oh, never mind.” Tate just calls it like he sees it, as do most people with autism. 

Tate’s Resource Room teacher and his Speech Therapist are always working hard on teaching conversation starters and how to sustain a conversation. It just doesn’t come naturally to a kid with autism like it does the rest of us. They are teaching him how to tell a joke and the poor school secretary has heard a joke a day for most of the year now. She is so accommodating and laughs for him. She is worth her weight in gold and a huge part of his day.

I cannot imagine how confusing it must be to live in Tate's world. I remember once saying something about "laughing my head off" and Tate coming over to me to inspect my neck. He needed to make sure my head was still attached. Recently someone commented on being "ate up with chiggers" and Tate looked extremely confused.  

We are all working on figurative language. Each week, Tate’s Resource Room teacher sends me a list of three to five new idioms or cliché’s they will be working on that week so I can reinforce them at home. It is so cool when I hear him use one of those at home. He has learned things like “I’m on fire” and “under the weather” and “letting the cat out of the bag.” These are the things that we all understand when we hear them due to the context. They have to be taught, systematically, to a person with autism. Otherwise, they will not “have a clue” what you are talking about.

If you have not ever read, Seeing Ghosts, then click on the link and enjoy. 

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