Monday, September 10, 2012

looking for Big Foot

In my last post I told you about the time Tate saw a ghost and had no trouble accepting the “fact” that ghosts roam freely in our world.  If he sees it, then it exists.  End of story.  Not being able to separate fantasy from reality, or understanding the motives of others and why they would pretend, has him believing in many costumed characters.  Tate doesn’t have any trouble believing Santa is real and his reindeer fly or that muppets are alive and well.  I have to explain to him what is real and what we are just pretending about “for fun.”  Sometimes I get through to him and sometimes I think it goes in one ear and right out the other. 


One of Tate’s favorite shows is iCarly.  He watches the reruns over and over.  In one episode, the iCarly show tries to find Big Foot.  At the end of the episode, Big Foot drives off with the RV.  Tate loves that part.  We have also seen Big Foot star in a few commercials for beef jerky.  Tate is convinced that Big Foot is alive and well and probably living in the trees around our house.  He isn’t frightened in any way.  He wants to catch sight of him.  Several times Tate has told me that we are going to go into the woods after dark and find Big Foot.  When Tate decides something is going to happen it is very hard to alter his plans.  It is not like redirecting a small child and distracting them with another activity.  He obsesses about the thing he wants to do and tries everything he can think of to make it happen.  His announcement usually begins “Hey Mom, on Friday night, we will go find Big Foot.”  I never know quite how to respond.  “No, we will not” won’t get me anywhere with Tate, and “Big Foot is not real” will not even be heard.  So, I usually just take advantage of the fact that he wants to converse with me.  Since conversation skills are few and the motivation to converse is rare, I go with the flow.  I might ask, “Where will we look?”  Tate will explain to me that Big Foot lives in the woods and we can look in the woods around our house or we could drive to some other wooded area if I like.  Then he will probably caution me that we will need to be careful if we drive anywhere because Big Foot has been known to steal people’s cars (the iCarly episode has taught him this).  I ask him what we will need to bring and he will tell me that we only need a flash light and some biscuits.  This summer, one of his siblings convinced him we would probably need some bait and Tate believes Big Foot would like biscuits.


I do a lot of things for Tate, but I am not about to go traipsing around in the woods at night looking for Big Foot.  I have tried several methods of convincing Tate that looking for Big Foot would not be a good idea.  Once I told Tate I wouldn’t be able to help him hunt for Big Foot because I’d be too afraid.  I asked “What would we do if we found him?”  Tate’s response?  “Shoot him.”  Yikes.  I guess we add a GUN to the list of things to bring now.  HELP!         

Saturday, September 8, 2012

seeing ghosts

Tate, age 3 ½ 
Tate thinks very literally and this often causes him to misunderstand the world around him. People with autism also struggle with separating reality from fantasy. One of the first times I realized how handicapped this made Tate was when he was around three or four years old. Tate and I were walking in a building on Kansas University’s campus and we came face-to-face with a woman wearing a hijab with a veil covering everything except her eyes. As we walked by her, Tate nonchalantly said “oh, a ghost.” He didn’t ask any questions. There was no alarm in his voice, no double-take, or any kind of disbelief at all. He called it like he saw it. He saw a ghost walking down a hall. End of story. 

A few days ago, we were driving through our small town and Tate saw a black sports car trimmed in lime green parked in a drive way. Tate said, matter-of-factly, “The Green Lantern lives there.” No big deal. A super hero lives in our town. One plus one equals two, after all. Like that “ghost” and the Green Lantern, many other costumed characters have been accepted by Tate as true to life personalities. I think this, and a lot of the other difficulties Tate has interpreting his world, can be traced back to the theory of mind issue. Theory of mind is the ability to understand that other people have thoughts and feelings too and people are not always thinking and feeling the same way you are. It takes theory of mind to be able to empathize with others, read body language, pretend, and understand a lot of humor. Tate cannot see why anyone would have a motive to pretend to be anything they are not. This is the part that can get a person with autism in a lot of trouble when mom is not there to watch out for them anymore. Typically developing children gain some street smarts at a fairly young age. They learn to “read between the lines.” They learn that sometimes people tell lies, pretend to be things they are not, and manipulate others so they can get what they want. Typically developing kids also learn to see some gray between all the black and white rules we live by.  Kids with autism don’t often learn all the exceptions to rules and gain the street smarts. People with autism can be taken advantage of very easily. 

Seeing a ghost and believing a car in town belongs to a super hero are things I can chuckle about but it makes me wonder how far it could go. We see wildlife in the yard quite often. A whole flock of turkeys walked across our yard today.  If a tiger sauntered across the yard while Tate was outside swinging I wonder if he would come inside to tell me or just casually say “hmmm, a tiger” and keep on swinging.

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Thursday, September 6, 2012

Holding onto a "live wire"

My last post mentioned how hard it was to carry Tate when he was little. Here's the link if you are interested in reading about that: A Sack of Potatoes It was equally as hard to carry Sydney but for totally different reasons. Even holding on to Sydney was challenging. She was so hyperactive I could barely keep her from jumping out of my arms. She had no reaction to pain so she didn’t mind if she fell head-first into the floor either. She would spin around and around in my arms so I had to hang on to one of her legs at all times. Occasionally she would throw herself backward, without warning, so I always had to be prepared for that as well.  

Sydney, One Year Old
I had read that a baby who is neglected learns to find ways to stimulate themselves so I knew we’d probably see these kinds of things in Sydney. When a brain is not stimulated it becomes damaged, thus the rocking and other behaviors are used by a baby to keep themselves “entertained.” It is like self-preservation. Unfortunately, the rocking and other behaviors do not suddenly stop when the baby is removed from the neglect. We had to teach Sydney that she no longer needed those behaviors. I provided her with lots of toys and activities. The house was definitely not boring with six older brothers and sisters. I sat beside her and put my hand on her back and said “no rocking” anytime it began. If I walked through the room she was in and saw her rocking, I touched her on the shoulder, reminding her constantly, “no rocking.” It got old but I was determined. Finally, she seemed to outgrow it or maybe she just didn’t need it anymore and it stopped. Throwing herself down violently from a sitting position also stopped over time. I tried to keep her on a soft surface, in the play pen or with pillows behind her so the crash to the floor wouldn’t hurt as badly in the meantime. Those crashes were so hard to watch. Occasionally, she knocked her head on the floor hard enough to stun herself. 

When Sydney came to us, she also sucked two middle fingers. It was adorable. I read and heard from many people that thumb sucking should be stopped at an early age because an older child was much harder to break of it. It was so cute while she was little but I knew that it would not be cute when she was older. I also figured Sydney would have enough to deal with when she started school and sucking on her fingers would be one more thing to cause her to look different than her peers. So…. I began that battle once the rocking had stopped. I felt mean and rotten asking her to take her fingers out of her mouth constantly. I read all kinds of remedies. I didn’t like any of them. I wasn’t going to put hot sauce on my baby’s fingers! During waking hours I was usually able to keep Sydney busy enough to keep the fingers out of her mouth but naps and night time were much more difficult. I tried pulling a pair of her brother’s long socks onto her hands and pinning them at the shoulders.  That worked usually, although sometimes she was able to wiggle her hands out and find those fingers. She really didn’t seem to miss sucking on them when they were not available though. When I look back on those days I still feel so mean, however I would do it again. There is a child I see a couple of times a week this year when I volunteer at Sydney’s school. The child often had two fingers in the mouth. A seven-year-old looks very immature when they are sucking their thumb or fingers during a spelling test. 

Sydney’s had a few other habits we’ve had to break. When she came to us, she picked at the ends of her fingers and toes until they bled. Can you imagine being so bored in a crib that you had resorted to causing yourself pain just so you would feel SOMETHING? I cannot. Keeping her feet covered and putting the socks on her hands helped keep her digits healed. Because I bite my nails myself, I have not been a good example in this area. I feel like a hypocrite anytime I ask Sydney to leave her fingers alone. She rarely causes them to bleed now. Sometimes when she is stressed I see her fingers suffer though. I have blogged before about Tate’s stims and said when we reduce or eradicate one, he often replaces it with another. Sydney does this too. While trying to eliminate the finger-picking, she began chewing on her hair. She came to us with short hair but it had grown quite long in a short time. Her hair was so pretty when it was clean and combed. I loved it long and tried everything I could think of to help her remember to keep it out of her mouth. She would hide and chew on it and she always sucked on it while she slept. She replaced her finger sucking with hair chewing. I had to cut her hair and we still keep it short. As soon as it gets long enough to reach with her mouth, it starts all over again. Just this morning I had to give her a shower and wash her hair before school because I couldn’t get a comb through the sticky hair. 

There are other bad habits and some of them are awful, while some are sort of endearing. I have blogged before about Sydney’s hoarding and the hiding of food. (See my blog post called HoardingThen there is the love of mulch and the visual stim she has. She brings every toy, block, pencil, or book she picks up, right up to the tip of her nose so she can spin the item right in front of her eyes. Many people have asked me why Sydney smells everything she picks up. It might look like she is sniffing things because her nose is right there but it is actually a visual thing. She picks something up by the edge or corner, using the tips of two fingers, and barely holding on to it at all, she brings it up to her face and spins it back and forth a couple of times. It looks very ritualistic. If she is building with legos, each and every lego comes up to her face. If I ask her to stop then she is quickly done playing legos. She seems to NEED to do this, much like Tate NEEDS to whisper the last few words of his sentence when he is finished talking to me. Obsessive Compulsive Disorder you say? Probably, says the doctor, at the very least, some kind of anxiety disorder. 

In my posts I often refer to Tate and Sydney’s “stimming” or “stims.” “Stimming” is short for self-stimulatory behavior(s) and are almost always present in a child with autism. It is also called stereotypic behavior.  It might be finger wiggling, hand flapping, rocking, spinning something, or any other repetitive movements. It could also be a vocal thing, like repeating words or squealing. People with autism might stim when they are bored, excited, anxious, or uncomfortable. These behaviors are not exclusive to people with autism. Do you tap your pencil, bounce your leg, bite your nails or twirl your hair? Those are also stims. A stim is not always a terrible thing that needs to be extinguished. An infant who sucks his thumb may need the stimulation while he is small. When he gets older, the thumb sucking will get in the way of activities, possibly spread germs, and look odd to his peers, so his mom will work on replacing the thumb sucking with something more appropriate. A child with autism gets caught up in a stim and uses it to shut out everything else. The stim takes away from learning opportunities and social interactions. Most of the stims Tate has had over the years have been things that needed to be minimized or eliminated.

Tate’s stimming began when he was around two years old when he lost his language and regressed. It is a result of autism, while Sydney’s stims are probably a result of neglect and an anxiety disorder.

To learn more about stimming see my post called Echoes from April 19, 2012.

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