Losing Language and Finding It

Tate developed language at a young age and spoke in complete sentences, and later lost it. I’ve told that story in other blog posts but I’ll give a quick review. When we began ABA therapy and discrete trial training, Tate was a little older than two and a half. At that time, Tate could still label almost anything but he could no longer speak in sentences. It seemed that when autism stole his ability to communicate, it was selective and it left him with a lot of nouns and a few verbs but no adjectives. He spoke with one word at a time. When he wanted a drink, he no longer said, “Can I have more milk?” but instead he just said, “milk.”

Tate, age 3

Now, this is the really interesting part: Some of his nouns were replaced by other words. The word umbrella was no longer “umbrella” like it used to be when he wanted to play with one, but it was changed to “rain.” The word “broom” was now “sweeping.” Sometimes he could use a phrase, and seemed to be using adjectives, but he really used the phrase as one word. For example, “wolf” was never just “wolf” but was now always, “big-bad-wolf.” The big and bad were not really used to describe the wolf but all three words used together were his label or his noun. It seemed like the autism scrambled his way of thinking. Tate could only think in very concrete thoughts. He was left with absolutely no ability to converse.

Because Tate was our sixth child I knew that most young children do not use pronouns correctly. Tate had amazed us at a very young age by using pronouns exactly as he should. He was able to say, “I want” instead of the “me want” that many small children use. I used to point that out to people so proudly and wonder why he was different than the other kids had been. I am absolutely sure that he could speak in four and five word sentences before he lost language. He could say, “Come, change my diaper” and “I stink” around age two, using the pronouns correctly. And then. It was gone.

As a baby, Tate had picked up pronouns from his environment. I did not spend huge amounts of time teaching him the correct way to speak. An eighteen-month old Tate could say, “I want” but a nearly three-year-old Tate usually said, “Tate wants.” Why was he in tune enough as a baby and toddler to pick up language but unable to learn from his surroundings as a preschooler without intense effort on his part and mine? Where did the pronouns, verbs and adjectives that he had learned previously go? He had to be taught again using systematic lessons. We had to go back to the beginning and start over. 

During the first ABA sessions, the teacher used very simple commands. She did not usually use more than four or five word sentences when she spoke to Tate. She did not use adjectives when giving him instruction. Because Tate’s receptive language was in the twelve-to-fifteen month range by this time, we had to communicate with few words. The more words used in a sentence, the less Tate got out of the sentence. During the discrete trials the commands were, “Do this” or “Build like this” or “give me” or “show me.” This seemed strange to me in a way. We were trying to build his vocabulary, not limit it. I remember telling the therapist, “But he could say, ‘this is delicious’ when he was just a baby and now he can barely talk!” I wondered why we weren’t trying harder to add words instead of limit them.

This was the answer I was given: We were going to build Tate’s expressive language by having him repeat sentences adding one new word each time. For example, when Tate said, “want milk,” I would say “want milk please.” Tate had to repeat my words before he got the milk. After he repeated my words, and as I was handing him his cup, I would say, “I want milk please.” This time he was not required to repeat my sentence but he usually did. We used this technique constantly. He started using real sentences and they began to lengthen. When Tate labeled something, then I repeated the word with an adjective or a verb attached. If he said, “truck” then I said, “big truck.” If he said, “frog” then I said, “green frog.”  This went on all day long every day of the week. Tate regained adjectives, verbs and adverbs. The progress was amazing. Sometimes we stalled for days but other times he added words by the dozens.

Some days were huge for us. Right after Tate’s third birthday in October, I took Levi and Tate out to lunch. Tate marched right up to the counter, looked at the woman taking orders and announced, “I want a cheeseburger please.” I nearly cried for joy. There was a day soon after when we were riding in the car and Tate called my attention to a school bus in the lane next to our car. Tate rarely called my attention to anything so I was shocked. He had never mastered joint attention, even before his regression. The bus was a yellow van. Tate was used to seeing the long buses that his siblings rode so he was confused by the size of the bus. He said, “Look Mom, a little bus.” We had been working that week on big and little and it was clearly getting through. He was generalizing what he had learned at the table. At that time we had only been doing our forty hours of discrete trial a week for about four months. And this is why I so strongly believe in ABA therapy and discrete trial training. Tate was regaining language almost as fast as he had lost it.

I should probably be clear about something because this comes up a lot. Some of you always want to know: Did Tate develop autism at age two? Is that why he lost his language? Tate already had autism. He was born with it. I know this. He had a lot of quirky behavior before he lost his language. He may have had such a huge vocabulary BECAUSE he had autism. I don’t know how autism works. Some kids never gain language. Some kids get it and lose it. Tate’s regression is common in children with autism. I don’t believe his shots at eighteen months caused autism. I didn’t drop him on his head at age two and cause the autism. There was no tragic event in his life. Tate was “different” from day one. I didn’t know what it was called or why he was different but he was different long before he spoke his first word and long before he lost the words.

Other posts about language: What brought you here? and Speaking Tate's Language

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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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Who's on First?

Tate's not sure if he likes
Snoopy or not.

Tate is very interested in Santa this year. He is insisting we all write letters to the man in red. He has asked his teachers to write letters, as well. They are so cooperative and have been playing right along. Tate can be VERY persuasive. I keep reminding Tate that Santa is just pretend and Tate doesn’t argue but I am not sure he “gets it.” So, this evening I had a long talk with Tate and Sydney about things that are real and things that are pretend. I had written a Bible lesson a couple of years ago called “God is Real” and tonight we went over the lesson together. First we talked about people we know. They are real. Then we talked, at length, about the real people of the Bible who did incredible things. We mentioned David and the giant Goliath, Noah and his huge boat, and Jonah in the belly of the whale. I made sure Tate and Sydney understood the Bible stories are true. Then we talked about some fictional characters like the three little pigs and the big bad wolf. We talked about dragons and unicorns and other pretend beings. I had created an activity so the kids could circle the “real” things and cross off the things that were not. Tate circled the word “God” and the image representing Jesus, as well as Noah and the ark. He crossed off the unicorn and the dragon but hesitated when he came to a fairy. He said “I’ve seen fairies on TV so they are real.” I said, “No, they are pretend just like other cartoon characters.”  Tate agreed. There was a picture of a super hero on the page and Tate looked up at me and asked “Are super heroes real?” I explained they were just pretend. (See my recent post called “Seeing Ghosts” where I explain how Tate became convinced the Green Lantern lives in our town.) The last picture was a genie on a flying carpet. Tate circled it. I said, “Tate, genies are just pretend.” He said, “Mom, you know Egypt is in the desert.” I agreed, wondering what that had to do with anything. He went on, “Genies live in Egypt.” I said, “Genies are just pretend.” He said, “Egypt is real and the desert is real and genies live there. They are real.” I can almost see the logic there. I said, "Tate. Cross off the genie" and he did comply but I don’t think he changed his belief. Haha When Tate is convinced he “knows” something then he cannot usually be persuaded to reject that belief. THAT is one of the hardest things we deal with. I've had a doctor call it "rigidity of thinking."    

It is very hard to communicate with Tate for several reasons. He doesn’t process very fast so he gets “lost” in all the language if you talk fast or long. He doesn’t understand figurative language so we have to be careful not to say anything he could misinterpret. If we really want to explain something we have to explain it slowly and systematically, using concrete thoughts. Also, he cannot be preoccupied or distracted by other things or other thoughts. He often goes around in circles and it gets comical to me. It sometimes reminds me of the old comedy routine “Who’s on first.” The following is a conversation we had yesterday: 

Me to Tate: "Do you want some milk?" Tate: "I had water." Me: "Do you want some milk with your waffle?" Tate: "I'll put this cup by the sink." Me: "Do you want me to put some milk in it?" Tate: "I drank water in this cup." Me: "But Tate, the water is all gone so now you can have milk in that cup if you want." Tate: "I need a different cup. This one had water in it." I took the cup from him and poured milk in it.  He surprised me and drank it without an argument.

Inserted below is part of a blog post from March. I believe it is from my very first post. I had documented a conversation that day and want to share it again here. If you’ve been reading my blog long, you might remember it. You can see the similarities in the two conversations and understand how hard it is to get Tate to focus on what you want him to when trying to explain something. It can be quite frustrating.

…this week, we began an organized effort to teach some figurative language. Example…Tate noticed a moth in the house and was obsessing about it. Shawn (Dad) got him a flyswatter and said “Here keep this handy.” Me: “Tate, do you know what it means to keep something handy?” Tate: “Kill that moth.” Me: “To keep something handy means to keep it close by so you can grab it. What if I said that I need to blow my nose and the Kleenex were handy?” Tate: “You can’t kill a moth with a Kleenex.” Me: “Tate, don’t think about the moth. We’re talking about the word HANDY. It means to keep something close by so you can use it.” (I inserted two more examples of ‘handy’ in a sentence.) Tate: “Will you kill that moth?”

Back to the present (2012):

This morning Tate was stuck on the subject of our trip to Tennessee next week to watch his oldest sister graduate from college. There is no changing the subject or trying to get his input on any other topic when he is stuck. Unless, of course, it would be a subject he would find even more appealing. He is often dwelling on his favorite shows or his favorite characters from his favorite shows and he cannot seem to think "around" those images in his mind. Because of this Tate learns very slowly. Can you imagine trying to learn something you were not interested in from someone you could barely hear if there was a loud video of your favorite movie playing on a headset that you had strapped to your head? I think that would be similar to what Tate deals with. How can he listen to a lecture on rocks in science class when he is replaying the "Toy Story" movie in his head and he cannot shut it off?    

I have a very dear friend who parents a child with severe autism. She inspires me to be a better parent and she is truly a hero in my book. Once she told me how brave she considered her son to be. She described HIM as a hero, dealing with things that are incredibly hard to make very small gains. I think of that often and I am so glad she gave me her perspective. It makes me think twice when I get a little frustrated that Tate will not (or cannot) focus and attend to what I would like him to. It makes me think twice when I get a little discouraged that Tate cannot remember which drawers to put his laundry away without supervision. (Yes, there ARE visual labels on his drawers.) Tate works harder to learn a little, than most of us would work to learn very complicated things. So, doing third grade math in the fifth grade is not something to be dissatisfied with, but something to celebrate. I hear often that we should not mourn the things our special kids cannot do, but take joy in the things they CAN do. Those words are truly words of wisdom. 

Find this blog and more on Facebook at Quirks and Chaos. Or, if you want to become a follower of the blog, just 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! 

Encouragers are needed. Be one!

I have a lot of stories left to share and new ones developing daily so I will not be running out of material soon.  By the way, if you have any questions about autism, our foreign adoption, ADHD, or strategies that help us cope, feel free to ask. If you want to hear more about any particular topic, let me know. 

When I meet a mom or dad who tell me they just received a diagnosis for their child my heart breaks for them. I remember the night I self-diagnosed Tate with autism.  He was two and a half. The hand-flapping had just started and Tate was withdrawing more and more into his own little world.  He still slept with us, as he did not sleep well at night. Erratic sleep patterns are something many people with autism suffer with. That night, as I lay by Tate, he was whispering. It sounded ritualistic and I asked him several times what he was saying. He couldn’t tell me. He had lost much of his language by that time, and he was often speaking gibberish. It was like a foreign language he could understand and he was talking to someone I could not see. When he was finally sleeping, I got up. I was worried sick, literally. I got online. I started typing in some of the symptoms I had seen. I thought I would find that Tate was mentally ill. Instead, I found the same word over and over: autism. When I read the signs of autism, Tate had almost all of them. I woke Shawn and we talked for a long time. He was able to go back to bed, after a while, but I stayed up all night, reading and trying to find answers. What were we going to do? How would I be able to deal with it all?

This was taken right about the time of the diagnosis.

When I meet a mom or dad who tells me they just received a diagnosis for their child, I remember all the things I should NOT say. I should NOT say “I have thought for a long time there was something wrong.” It is like telling someone who is overweight they are fat. They already know it. How would it encourage a devastated parent to tell them that you have suspected for a long time their child was not developing as he/she should? The parent “knew” too but needed to figure it out for themselves and deal with it before making an announcement to the world. Does an “I knew before you did” attitude really need to be voiced? 

I should also NOT say “Everything happens for a reason.” Think about it.  What is that supposed to mean? I have heard it from people after I lost a baby, after Tate was diagnosed with autism, and after other tragedies. Everything does not happen for “a reason.” God doesn’t reach down and zap people with tragedies or illnesses so others can learn from it. Bad things happen to good people every day and it is not God’s work. If a finger should be pointed, then point it at Satan, not God. Everything does not happen for a reason. Babies do not die for “a reason” and little boys do not get autism for “a reason.” We make the best of these bad situations and learn from them but it is not “a reason” for what has happened. See Rule #11 in My 15 Truths of Parenting Special Kids.

When I meet a mom or dad who tells me they just received a diagnosis for their child, I try to encourage them. I tell them of other children I know with autism and the good outcomes I have seen. I do not tell them about the children I know who are not making progress. If someone you know is diagnosed with a health problem, do you tell them of another person you know who has died of the same thing? I have surrounded myself with encouragers. It is so much easier to give Tate and Sydney what they need when I have cheer leaders. If you are not an encourager, practice! I challenge anyone reading to encourage someone you know, this week, who is parenting or teaching a special needs child. Or encourage a handicapped adult. If you don’t know someone, then look around you. A lot of times you will see people with a special need returning carts at a store, wiping tables at a fast food restaurant, pushing a broom, or stocking shelves. I try to speak to those people as often as I can these past few years. Make eye contact, smile and say “hello” because many people treat them like they are invisible. I used to. One of those people may someday be my son or daughter… or your grandchild. Think about it. 

You might also like: Don't Blink

Note: The morning after I found autism on the internet I got Tate into our pediatrician and he confirmed my fears but was not qualified to give us a diagnosis. The wait to get into a specialist was 3 months. In the meantime, we started early intervention by hiring a behavior consultant and developing a discrete trial program to teach Tate the things he was not learning. I will describe our discrete trial program and what early intervention entails in future posts. I will also describe that visit to the developmental pediatrician to obtain a diagnosis.

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! You can also find us on Facebook. Look for Quirks and Chaos.