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!