Three Steps Forward and Two Steps Back

Three steps forward and two steps back: My life is a version of hhe bunny-hop.  We make a little progress and then have a set-back.

This week has been a hard one. I’m not good at tough-love, especially with my two youngest. It has always been hard for me not to spoil my kids and sometimes I have had to undo damage that I have inflicted, but it seems doubly hard for me not to give the two youngest what they want. What they want is not always what they need though and that is where the tough-love comes in. Tate and Sydney have to do without so much in their world that I cannot always give them: regular friendships, the ability to understand social relationships, a grade-level understanding of academics, age appropriate motor skills, the ability to communicate what they are thinking or feeling, and much more. So, when there are things that I CAN give them, things they want, I tend to bend over backward to make those things happen. Saying “no” to them is hard for me. 

It has been a long time since I’ve left Tate at school crying. He used to cry almost every morning before school but that was before we had the kind of IEP team we have now. I had forgotten how hard it is to walk away from the young man that has custody of my heart when he was sobbing. This morning I left him, wiping tears, with his shoulders shaking.  I told myself it was no big deal. I had a talk with myself about toughening up and the “big picture.” I got a block from school and burst into my own tears. I wanted to turn around, run back into the building, tell him that everything that led up to the tears was a mistake, and we could let him have it all his way. But his way, is not the best way and his way will just handicap him further. 

There is a behavior stereotypic of autism called echolalia. It just means echoing or parroting words or phrases. Tate used to echo movie phrases or book passages a lot. He also used to echo the last word of every sentence he spoke. He often did that in a whisper. It was pretty creepy sometimes and it was one of the first behaviors we eliminated when he was diagnosed with autism. I worked hard to rid us of that behavior by constantly telling him not to repeat, or “No whispering.” If I had a dollar for every time I said, “No whispering” I could probably buy a new car. I always said it with a smile on my face because I never wanted Tate to think he was in trouble or doing something naughty. A child with autism cannot help the fact that they have stereotypic behaviors (stims.) A stim often looks like a behavior you would see with Obsessive Compulsive Disorder. Stims can be redirected and eliminated sometimes but are often replaced with other behaviors that are even worse than the original behavior. We try to eliminate the worst stims we see and live with the milder ones.   

Occasionally when Tate is stressed he can still be heard whispering the last word or sometimes the last sentence he spoke but he doesn’t do it often. We don’t hear the movie dialogue like we used to either, but he has taken it to another level. He tells bits from sitcom stories as if they really happened to him. This is where our problem today began. Tate’s favorite shows are shows on the Disney channel: “Sam and Kat,” “Jessie,” “i-Carly” and “Good Luck Charlie.” Tate has taken scenes or jokes from the shows and built stories around them to tell to anyone that will listen. His latest story is that he will start a babysitting service in his apartment building (we actually live in a house) and he will “change them, feed them, burp them” as well as have a website for Tate’s babysitting service dot com. I have heard this over and over for days. Before that, he was going to be in a play on the high school stage and he was inviting people to it. I actually had people stopping me and asking what Tate’s play was going to be about. He loved the attention. It didn’t matter to him that it was all fantasy and he couldn’t really “deliver” a play.

This is a fairly new thing. Three steps forward:  Tate is seeking attention from others. Tate is communicating. Tate is pretending. All these things are things we WANT to see when a kid has autism. 

I didn’t know what to do about this new behavior. At first I listened and gave him an audience. I tried to help him with writing a script for his play. He was not interested, nor does he really have the ability to plan or write a play, even with help. So then I tried talking to Tate about it, explaining that he was pretending and he couldn’t continue to talk to people about all the pretend things. I told him it was not appropriate and it was confusing to people. He did seem to make an effort to hide it from me and only talk to people about his fantasies when I was not standing right beside him. So then I tried asking him nicely to stop. It stopped at home but not at school or in the community. 

Two steps back:  The fantasy talk has become a real problem. He is interrupting teachers, dominating conversations with peers, and causing awkward moments because people do not know how to respond. Soon, I fear he will be alienating people from his world who used to enjoy his company.  

So, what’s a mom to do? Tell the dad to take care of the problem, of course! Shawn is a very involved dad. Tate recognizes that Mom is a softer place to fall than Dad and Dad is the authority figure in our home. Dad had not yet addressed the “problem” although he knew it was becoming an issue. Last evening Dad initiated the tough-love I asked him to. He had a serious talk with Tate. Shawn did not frown, did not raise his voice, and did not try to intimidate Tate in anyway, but the message was clear:  the pretend babysitting service and all the other fantasies have to stop. There will be no more conversations based on those things. This morning I reminded Tate that he could start conversations with his friends and teachers about a lot of things. He could talk about his pets, his Halloween costume, or even a show he liked to watch, but he was not to talk about having a babysitting service or anything else that was not true. He seemed okay. He stimmed a little, but not a lot. We walked into the school, I greeted his Para and Tate choked. Then he began to sob.  He rarely cries. Seriously, I think he has gone a whole year before without crying. In Tate’s world, crying is big. In Tate’s world, crying is huge. Oh how I wish he was still two years old and I could make everything better. When Tate was two I still didn’t know what autism was. I still didn’t know our world would be turned upside down by a disorder I didn’t recognize. In my mind I still had six “normal” kids. Until you hear the words, “Your little boy has autism” I’m not sure you could understand how badly I would like to turn back the clock. Ignorance was bliss.

I’ve read a lot of books about autism. A. Lot. Of. Books. Some of the most helpful books I have read, were written by adults with autism. Temple Grandin is a favorite author of mine, and Sean Barron is another. Sean tells of being a young man and being very interested in television. He also was interested in having friends but had no idea how to make a friend or how to communicate. He didn’t know what was socially acceptable and what was not. He knew that the cartoons and sitcoms he watched got a lot of laughs from people so he began to memorize lines from the shows and he would deliver them to his school mates. Because the scripted lines were not set up properly and were out of context, Sean would get no laughter. He couldn’t figure out why and it left him angry and confused. I often think about this when Tate is trying to tell a joke he heard on television or is quoting movie lines. Is it the same for him? Is it different? Will he ever be able to tell me? 

We move forward in other ways, only to fall back. For years I have tried to interest Tate in participating during worship services. He has been singing for years but zones out for the rest of the service. I have tried to get him to hold a songbook while he sings but he has complained that it was too heavy and he couldn’t look up the numbers because it was too hard. I have made some huge headway with him lately. Three steps forward:  Tate has learned to follow along and keep his place while we sing hymns. He understands how the stanzas work and the chorus repeats. Most recently, he began looking up the numbers by himself, rarely needing help to find a hymn!  He has even begun to pick up his book without me reminding him. Two steps back: Holding that “heavy” hymnbook has brought back a stim that we broke him of many, many years ago: fanning the corners of a book. I’m not talking about fanning the corners for a second and putting the book away. I’m talking about becoming LOST in the movement of the pages as they fan across his thumb. His whole focus is absorbed into the corners of that book and it could keep his attention for twenty minutes easily. No big deal if he only does it during worship? No! It has the potential to consume him at home and with every book he can get his hands on. So, after we sing, I take the book, put it back in the rack and tell him he is not allowed to touch it again until it is time to sing. What’s the big deal? Do you know how many books there are in this world I will have to keep an eye on now? Ha! Honestly, I feel like I can hear the music playing now. The tune is “The Bunny Hop.”   
There is a follow up to this story here: Part Two 

In the dark

This morning Tate asked me if the power went out at home yesterday. I thought a minute and said “No. Did it go out at school?” He said that it had. Levi and Sydney chimed in that the power had gone out at their schools, as well. I asked Tate if the power going out had bothered him and he said it had not. Why is this worthy of me writing about? There are a couple of reasons. First, Tate doesn’t often share anything with me about his day, nor does he usually begin casual conversations. He began a conversation with a question about me and my day, which led to sharing something with me about his experience away from home. Secondly, Tate has overcome (for the most part) one of his biggest anxieties: power outages. 

It began when he was a toddler. A power flicker sent him into a meltdown. There would be crying, hyperventilating, and lots of stimming. If the power stayed off for more than a few minutes and it was anywhere close to bedtime, I would just take him to my bed and hold him tight until he fell asleep. He was so terrified. As Tate got older he became obsessed about the whole issue. He worried about the power going out and talked about it a lot. Because he didn’t really have conversations but mostly just talked AT us, it was hard to reason with him about anything. If it looked like rain then he began worrying. It took me a while to understand what the real issue was. I thought maybe he had a fear there might be a tornado since we do live in Kansas and have many warnings. I thought he was afraid of the thunder and lighting and the dark when the power went out. I bought flashlights that charge in the outlet and stay lit when the power goes out. I wrote a social story about storms and the dark. But, I discovered it wasn’t really about the darkness or the storm outside so much. He was really afraid of the unpredictability. He had to be able to COUNT ON the lights when he flipped the switch. Tate’s world revolves around the television and other technology. When the lights went out, the television stopped and the VCR stopped; and it was all out of his control. The meltdown was not out of anger and never about the fact that the movie ended prematurely, as it might have been for a typical toddler. The meltdown was out of anxiety because he did not KNOW when the power would come back on and the television and lights were no longer reliable. Tate has to KNOW what comes next to feel secure. His world is much smaller than yours or mine. Tate has never had the amount of anxiety away from home in a power outage that he has had at home during a power outage. At school they would tell me he might act a little nervous but never have a meltdown. I worried that the school staff might think my warnings about power outages were exaggerated or that I somehow caused the anxiety he had myself. When you have a child with autism who does not communicate well, it is hard not to worry about what other people think. I believe he saved the extreme reaction for me because he could “be himself” with me and show me his anxieties. Of course, there was no television to go out at school and that helped too. I saw evidence of him being anxious about the power outages at school when he returned home.  He saved it for me. It was similar when Tate had a substitute teacher. I asked over and over for “them” to warn me when there would be a substitute but he did not melt down over having a sub at school so “they” did not seem to believe that it was a real issue. He saved the anxiety for me. He would talk about it all evening and ask me who his teacher would be the next day. If I didn’t know for sure then I couldn’t tell him. A lot of times the regular education teachers let me know if there would be a para switch (if they knew themselves) and they always let me know if they would not be there themselves. With warning Tate did well with a substitute. Springing it on him caused anxiety. He needed the predictability. He still needs the predictability but he is more able to handle irregularity now. 

Tate didn’t have a reaction to yesterday’s power outage at home or at school (I asked). Since he only casually mentioned it to me this morning I am elated at the progress we have made. The last few times we have had power outages at home he retired to his bed with a flashlight and a battery operated game. He stims a little more but he does not cry or panic. There is light at the end of our dark tunnel… pun intended. 

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