Autism parents have a lot in common

My son Tate is fifteen. Tate has autism. He was about two and a half years old when he was diagnosed. Parenting a child with autism is challenging at times, but also very rewarding. We have had a lot of interesting experiences over the years and gotten to know a lot of others who are also a part of the autism community. So many of our stories and experiences are similar. I recently decided to illustrate some of the most common and repeated scenarios I have heard about from others in the autism community and/or experienced myself. They are in no particular order.

If you can relate let me know. I will be adding to these so tell me what kinds of things happen to you the most: annoying things, rewarding things, kindnesses shown, and the ways you’ve had to educate others. I would love to hear from you. Contact me on my Facebook Page called Quirks and Chaos. The comments are temporarily turned off here.

We are all in this together!  -Lisa

You might also like this post: You may be an autism parent if...

You can stop talking now.

My husband is a heating and air conditioning contractor who runs his own business. But, more importantly, he is a Church of Christ minister and has been preaching at our small congregation for 25 years with the exception of about eighteen months that coincided with Sydney’s adoption and the beginning of Tate’s intensive early intervention. So, our kids have all grown up as preacher’s kids. I say that to set up the stories I have to tell you today.

"Scram. Beat it."

When our oldest son was just a toddler, one Sunday he was standing at the back of the building with me as everyone was exiting. We were usually the last to leave, making sure to speak to every member. I guess this particular day our little guy had been tickled, teased, and patted on the head all he could stand. He’d had enough. As the last of the crowd thinned, and it became very quiet in the back, an elderly lady bent down to speak to our sweet, angelic, precious, little guy and he responded with a growling, “Scram. Beat it.” She was shocked; and she straightened up giving me a polite smile and a nervous laugh. I was horrified and apologized to her while probably turning every shade of red a human can turn. We, of course, lectured our little guy on the way home and his daddy spanked him for being so rude. I knew exactly where the offensive phrase had come from, as Oscar the Grouch was our child’s favorite Sesame Street character.  As awful as that seemed to me on the day it happened, I have come to love telling this story and have shared it with lots of people over the years. “Scram, beat it” has become sort of a term of endearment to me and as the kids get out of the car for school, I often say, “Have a good day. Now, scram, beat it.”

Fast-forward 24 years and several children later. Wednesday evening I was walking down the stairs of the same church building to teach Bible class. I heard Sydney several feet ahead of me, in her best teacher voice, say, “Tate! Don’t be so rude!” I also heard a laugh from an adult in the same vicinity at the same time; not the kind of laugh that comes from hearing a good joke, mind you, but the kind of laugh that comes from someone when they don’t know what to say or how to respond. Let me insert here that our church family is so very understanding of Tate’s lack of social skills. They do not make him feel badly (or his family feel badly) when he is less than friendly, ever. On top of that they go out of their way to help us watch out for him (and Sydney too) always trying to speak to him so they help him practice his social skills. Now, back to the story: I caught up to my two “angels” in our classroom I was barraged with Sydney’s NEED to tattle and Tate’s desire to keep me in the dark. They each got louder and louder trying to drown out the other one. I stopped them both by speaking quietly. It is an amazing thing I have learned. When kids are yelling, they get quiet a whole lot faster if you speak softly than if you holler back. I asked Tate if he would like to tell me what he had said that was rude. He said he would not. So I asked Sydney to go ahead and tell me. This resulted in both talking loudly at the same time again. I wish I could film this sometime because it really is quite comical and is becoming a frequent part of our lives now. Sydney began talking and could only get out one or two words at a time while Tate was interrupting the whole time with, “No. No. No. We don’t want to hear. No. Hey! Hey! No! Stop talking! Quit. Be quiet. No! Our mom does not want to hear this.” Somehow, I was able to decipher. I think. As they were going down to class a grown up had asked Tate a question, trying to strike up a conversation. Instead of answering politely, Tate had a “scram, beat it,” moment. He told the grown up who had tried to speak to him, “You can stop talking now.” Was I horrified? Yes. Yes, I was, but knowing that we were amongst Christian friends who understood made it much less horrifying. I used the first part of our Bible class to discuss manners and hope it did some good. Hope is the key word. I keep trying but autism is so much bigger and stronger than my lessons on courtesy and social skills sometimes.

I’ve been thinking a lot about these two instances since Wednesday evening. They were 25 years apart, one with a toddler and one with a young man taller than myself. If I allowed myself to, I could become quite depressed that I am still trying to teach lessons to my 12 year old that he should have learned as a preschooler. Instead I will choose to find the humor, be glad that we have understanding friends, and keep hammering away at the rude behaviors.

Tate and Sydney

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Speaking Tate's Language

Tate, like most children with autism, is not proficient at beginning or maintaining conversations. Tate demonstrates this for us repeatedly. He begins conversations inappropriately often. Almost always the language is abrupt and sounds awkward. Occasionally the topic is inappropriate and sometimes even seems rude.

He's 12 and 6'2" and she's 10. Her BIG brother loves her. 

So many people start their conversations with Tate about his height or how much he has grown since they last saw him. Tate is over 6’ tall at the age of 12. We went to his doctor for a check up a few days ago. The doctor is a very small, petite woman. Tate began his greeting with, “You have gotten much smaller since I was here last time. Are you shrinking?” This sounded so very rude but Tate was not intending to be rude and it was not an attempt at a joke. He was just trying to start a conversation the way people often start one with him. Luckily, the doctor is an autism expert and did not skip a beat but continued the conversation about her size compared to his.

Last week we visited a mall and approached a clerk who was going to take our payment. As soon as the clerk opened her mouth to speak I feared what would follow. She had a very thick accent and was hard for us to understand. Tate did exactly what I thought he would. He said, “Hey! What language are you speaking?” I quickly said, “Tate, she is speaking English.” The clerk was very nice, told us where she was from, and said, “The next time you see me say, ‘Shalom.’ That is how we greet people in my country.” Tate responded with some gibberish that sounded something like, “Sinamma Coo Seendia oh oh new” and the clerk gave me a blank look. I said, “He thinks he is speaking Spanish when he does that.” She asked him to repeat it and he did. She smiled huge and asked him to say it one more time.” We walked away with Tate feeling very proud, but it could have gone the other way. I’m so thankful that people are usually understanding and friendly when Tate exhibits behaviors that appear peculiar. It is so much easier on his Mom.

Much of the time the topics of Tate’s conversation are unusual and appear odd but sometimes they are more inappropriate than others. Until a couple of years ago Tate frequently wet his bed at night. (See: "Wet or Dry" for that story.) This meant he had to have a bath or shower every morning. He would sometimes walk into his classroom first thing in the morning and announce to his class, “I took a shower this morning” or on one of the dry mornings he might broadcast that he had NOT had a shower that morning. He still occasionally tells people that he has showered and cannot seem to understand why we all keep telling him it is not an appropriate topic of conversation. This brings me to another story… Last week I saw a pair of underwear in his trashcan and I asked him about it. He told me they had a hole in them and it was no big deal. Since that day he is constantly telling me that we need to go purchase a replacement pair. I have assured him that he has plenty of underwear. It is a hot topic so it occurred to me that I should probably warn him that it was not something he should discuss at school. I was very clear when I explained to him that we do not discuss our underwear with our classmates or teachers. Yesterday, one of Tate’s teachers told me that Tate explained his “need” for some new underwear to her. She also explained to him that underwear is not a topic of conversation we use at school. Sigh. He just doesn’t get it. I know that if I buy him a new package of underwear he will stop talking about the need to get some and switch to telling people he has on new underwear instead.

Those awkward conversations are not always because Tate chooses inappropriate topics to discuss, but sometimes because he misunderstands so much of the language others are using. Last semester there were several babies born in our “school family” and the teachers gave the lucky families a baby shower. The morning after the shower, Tate overheard his teachers discussing the big shower they all attended from the night before. In Tate’s mind a shower involves water and soap so he pictured a bunch of wet teachers passing the soap around I am sure. Tate asked a question about their group shower and a red-faced teacher quickly explained that a baby shower entails no water or soap, but only gifts and refreshments. Tate’s world is such a confusing one.

Sometimes Tate makes loud observations about the people around us.  When Tate was much younger we were in a store and saw a man who had one arm missing. The man was wearing a western shirt, boots, and a cowboy hat. Tate very loudly said, “This place has one-armed cowboys.” I do not know if the man heard or not but if he did he was gracious enough not to say anything while I tried to hush Tate. It gets even “better” though, we saw the man again later in another place and stood right behind him in a line. I did my best to keep Tate’s attention on me and was successful at avoiding another outburst. Then, we found a seat to eat some lunch, and who came and sat at the very next table? You guessed it. The same man. I often think of Batman’s line in the old Batman movie when these kinds of things happen: “some days you just can’t get rid of a bomb.” For a year or two after that experience, Tate always referred to the store where we saw that man as, "the one-armed cowboy store."

Similar things have happened many times since I tried to hush Tate that day. We were in a nursing home once and Tate told an elderly woman that her face was very old and wrinkley. Another time he told a young staff member at his school that her face looked old. She was wonderful and gently told him that those kinds of things were better left unsaid. Just a short time after that, Tate was in the school office on Grandparents’ Day and there were a lot of older folks coming through to eat lunch with their grandchildren. Tate opened his mouth to comment and a teacher quickly said, “Tate, think about what you are going to say before you say it.” Tate stopped himself and said, “never mind.” When you hang out with Tate you need a good sense of humor and a lot of self-esteem.

I’ve been working hard with both of my special kids about talking ABOUT people in front of them. They will question me about a person’s clothing, their skin color, the language they are speaking, or anything else that is “different” about them. It is sometimes extremely embarrassing. A year ago we were heading into a movie theater when Tate stopped to look at a young man who was in a wheel chair.  He asked me, in front of the man, why he was in a wheel chair. I did not have many options that were not going to appear to be rude. I told Tate that he could speak to the man and ask him. The man, hearing everything that had been said, told Tate that he was born with a disease and his legs did not work. As Tate walked toward our theater I hung back and said, “My son was also born with a disability. I’m sorry he was rude and I thank you for being nice to him.” The young man told me that he could tell and he was not offended. When things like this happen I am sometimes horrified but then try to remember to count my blessings. Tate has strengths that so many mothers of children with autism would give anything to see in their own child. He can talk. He is interested in the world around him (even if those interests are limited and often peculiar). He can understand so many things that he is taught. Some things are just taking a lot longer to teach him than others. 

Tate’s Bible class teacher is fantastic with him and has a genuine love for him. I am so very thankful for her. She has a lot of patience and has listened to many of Tate’s long talks about movies and things that are important to him. When they are going to have a visitor in Bible class there is potential for disaster. A few weeks when a visitor came to class, Tate acknowledged her presence with, “Hey. What are you doing here?” It sounds so rude but he is basically just curious and wants some answers. His routine is broken and he needs to know why in order to feel comfortable with the change. Luckily the young lady was not offended and was very nice to Tate. I met her later and explained that Tate has autism but she had already figured it out. I’m finding that a lot of kids today are often very familiar with autism and both accepting and understanding. I would imagine it is due to full inclusion in the schools. When the general population is exposed to children with disabilities then it takes away so many of the questions and the fear of how to relate to them. Autism awareness is so important to families like mine.

Sometimes the moments that leave me horrified are the ones I can laugh really hard about later. I hope you enjoyed this read and will pass it on to someone else who might like to walk a mile in the shoes of a mom who has a wonderful son that thinks unconventionally.

Another post about language is: Who's on First? And here is one more: What brought you here? 

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prank phone calls and teaching Tate

I have so many stories to share, but they are not all related to one topic (unless it is just autism, in general) so this is going to be a pretty random post. 

Tate has tried his hand this week at practical jokes. He will tell me in a whisper that he is going to prank someone, usually Levi, and then do something really silly. A few nights ago, Tate dropped a clothes hamper over Levi’s head. Of course, Levi saw it coming and cooperated so Tate could have his fun. 

We found out last night that we would be staying home today for a snow day. Tate became so excited he began to chatter and he became very animated and active. He isn’t usually much of a talker so when it happens we love it. He gets really talkative sometimes when he is happy. A day I will always remember is from a trip to pick out an Xmas tree, in 2011. It was one of the first times he had EVER become a chatter-box for a day. Most days he is pretty quiet. 

Tate’s favorite prank right now is to go find a sibling and tell them that Mom has been calling. Then he follows them into the room and when they ask what I wanted and I look confused, Tate runs and they chase. Last night he did it to everyone, at least once. They are great to play along. Tate has started making up jokes that are usually not funny too. Last night he told one he made up: “Why did the pen not write on the paper? Because the paper fell on the floor!” We usually laugh much longer and louder than is worthy of such a joke because of the kick we get out of Tate telling a joke. Most kids make up their own jokes around age four. I know because I had five kids before Tate that told me hundreds of jokes. I have heard “knock knock” many, many times in the past twenty years!

Last night Tate told me he was going to call his older brothers who live in Tennessee and prank them on the phone. I could hear his end of the conversation with both boys. When they answered, Tate yelled into the phone, in a voice that is cracking due to his age, “Hellooooooo, How can I help you?” Then he said, “I don’t have the wrong number, YOOOOOUUUUU have the wrong number.” He did a lot of giggling. He told one of the boys “Congratulations, you have just won a new foot.” We were laughing pretty hard on this end but I haven’t talked to my boys yet to find out if they understood much of what he was saying. Knowing them, they loved the call. I couldn’t ask for better kids than I have. Tate has a whole family of therapists. For more on Tate's siblings and all that they do, read here: He's My Brother

Totally unrelated to the above: This past weekend we skipped an afternoon of school and went to the movie theater. That is not the real story I want to tell here, but it is a story in itself. When Tate hears the release date of an animated movie or a movie that strikes his interest, he immediately begins to make plans to attend the opening day of said movie. If you are not involved in the life of a child with autism, you probably will not understand the importance of these kinds of things to us here in the Smith family. When Tate makes a plan, if it is not altered or shot down, IMMEDIATELY, then it is set in stone. The mind of a child with autism is much like stone. Plans made are not easily changed. Usually, I am fine with taking Tate to a movie on a Friday after school. He doesn’t ask (demand) that often, maybe every-other month. So, last Friday was one of those times and I had agreed to take him. After about three days of listening to him talk about the movie, my senior in high school, told me that my presence was required at one of her school events. She told me IN FRONT OF TATE, so there was no time for me to prepare myself for his anxiety attack. His face turned blotchy, he began to choke, and he started pacing the floor on his tiptoes. He actually said some pretty hilarious things in his misery. He was trying to talk us out of our alternate plans and saying things to his sister like, “I’m sorry, but we won’t be able to attend that game. You’ll be on your own.” The funniest thing he said was, “If your wedding is on a Friday night, we won’t be able to make it.” Tate’s oldest sister came up with the perfect solution. She would take Tate out of school early on Friday and take him to the movie. 

I told that story to tell this one: At the theater, a young man in a wheel chair was taking tickets. Tate got right in front of him and even crowded him and said to me, “Hey, what’s wrong with him?” I was totally taken back. I had no idea what to do. I knew I needed to use the moment to teach but what was the proper way to handle the situation? I had no time to decide. I said to Tate, “You can ask him, why he needs to use a wheel chair.” Tate said to him, “What’s wrong with you?” The young man said, “I have a disease.” Tate said “Oh” and walked away. I hung back to explain to the young man that Tate was lacking in manners because he has autism and doesn’t have many social skills. The guy replied that he could tell and he was very gracious, although we were both embarrassed. As we got settled in our seats and waited for our movie to begin I talked to Tate about how impolite it is to ask someone what is wrong with them if they are sitting in a wheel chair. He seemed to understand. A few days later, Tate asked a person with a blemish on their face, what was wrong with their face and I had to repeat the lecture. If that person had been in a wheel chair, he wouldn’t have asked them perhaps but I hadn’t covered acne.  If you think about it, etiquette is very hard to teach. It is okay to ask a friend who shows up to school with a broken arm, what happened to their arm, but very rude to ask a stranger in a wheel chair what happened to their legs. Typically developing kids just learn these things from watching and absorbing the examples around them. Kids with autism have to be taught everything they know systematically. They have to file away each little lesson and each little variance to each rule so they can know how to act. When something new comes along that they have not seen before, they don’t know what the proper response should be. They don’t mean to be rude. They just have no idea what is acceptable and what is not. These kinds of unwritten rules are often referred to as “the hidden curriculum” in schools. Teachers don’t have to teach the hidden curriculum to the typically developing kids but the kids with autism do need to be taught all the unwritten rules. I feel so badly sometimes when I hand my special needs kids to their teachers. I’m asking them to give more and do more for my kids than their job descriptions ever called for. I don’t think that colleges give a lot of instruction to their teaching students on the hidden curriculum. Special needs students, fully included or not, require so much more work than the other students. They are also much more expensive to educate, due to the need for para support, other services, and modified materials and equipment. I cannot sing praises loud enough for my kids’ teachers. 

A little bit more about hidden rules that Tate cannot learn without systematic instruction: One day this week when I dropped Tate off at school, I watched him walk into the building as usual. A girl much smaller than him was holding the door, waiting for Tate to catch it. A boy much smaller than Tate was right behind him, waiting to enter. Tate pulled the door open, slipped through and dropped the door. The little boy behind had to reopen the door because Tate had not pushed it open wide enough for him or held it that extra second it would have taken for him to grab. These kinds of things come so natural for the rest of us. Tate is not mean. He just doesn’t think about others, their thoughts, their feelings, their plans, or their motives. That part of his brain isn’t working. He cannot help it. If we teach him the “rule” for holding the door for the kid behind him then he will hold the door next time…. But then there will be variances of that rule that come up. What do you do if you are in a crowd and there are a lot of people behind you? What do you do if the person is on crutches or pushing a stroller and you need to move out of the way a little while you hold the door? All these things would leave Tate confused about what to do. I asked Tate’s teachers to help me teach Tate about holding the doors. The teaching opportunities for social skills abound at the school. Tate’s classmates are often involved in teaching new skills. I appreciate them so much. 

If you liked this post, you might also like this one: What is Autism?

Find me on Facebook at Quirks and Chaos. Like what you read? Want to become a follower? Click on the Google Friend Following gadget on this blog. It's over on the right side and asks you to subscribe. Or you can add the URL (the web address in your search bar) to your Reading List. You can do that by clicking the plus sign in front of the URL. Thanks!