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 Hoarding) Then 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. 

Note:

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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Echoes

Eventually, I may run out of quirks to ponder and chaos to control but I am not there yet. I was remembering today how Tate used to memorize jingles and commercials. When he was a toddler, we’d walk through the grocery store and see a character that represented a product: the Charmin Bear, the Kool Aid Man, the Keebler Elf, Mr. Clean… Tate would recite the commercial or the jingle that went with the product, word for word. He memorized songs, books and dialogue from favorite movies too, often with just one or two exposures to them. He had some great language but no conversation skills. He couldn’t answer a question but he could repeat the question. It is called echolalia and is common with autism. When Tate was very young, he would say “mommy?” I would answer “what?” He started calling me “mommy-what” and that became my new name to him. That was before we got a diagnosis. He was a little strange to me but so cute. Once we got a diagnosis of autism and I recognized the echoes for what they are, I worked hard to eliminate them. I must have said, “Don’t repeat” a hundred times a day at first. Tate stopped echoing others but then replaced it by echoing himself. He would either repeat a sentence or repeat the last few words of his sentence. He still does this fairly often. It comes and goes and may always do so. Many of Tate’s stereotypic behaviors (stims) have disappeared and then resurfaced again. However, if Tate knows it is not something we want him to do, he often tries to hide the stim. Now, he frequently whispers his echo. Tate is never punished for echoing or for any other behavior that is stereotypic of autism. He just wants to please me, thus the whispered echo instead of the echo that we used to have. He is such a good boy and he is trying so hard, it is just hard to fight the “need” to stim. I wish I was able to explain it but I do think I understand it, somewhat. It seems to be like an obsession or a compulsion. OCD is often co-morbid with autism. I do not know where the line is drawn between a stim and an obsession/compulsion. I suppose that I may get a better explanation as Tate ages and if/when we need to see doctors regarding these issues. I have heard and read some of the reasons Temple Grandin gives for these kinds of things and I would highly recommend her books to anyone wanting to learn more about autism. She has autism but has overcome so much and is a brilliant writer.

Some of the stims over the years were easier to reduce than others. There was the awful telltale sign of autism when Tate was two and a half: hand flapping. Hand flapping is the stim that I have heard about the most. It looked awful; and although, I had no idea what autism was, I knew that we were looking at something huge. I first suspected a mental illness. The first time I ever saw hand flapping I held Tate’s hands and told him that it did not look nice. It didn’t creep up on us; because one day he did not do it and the next day he did…. a lot. Every time he started I would stop him. I stayed in the same room with him much of the time so I could stop it as soon as it started. He did it when he was excited, bored or anxious. I was vigilant and persistent. It didn’t take very many weeks until he stopped doing it, because of all of my intervention. As I found out though, every time we eliminate a stim, another one takes its place and sometimes the new stim is less desirable than the one it replaced. I have learned to live with some of them and be quite happy that they are NOT others. 

Why do I want to eliminate the stimming at all? Tate’s peers will not find him very approachable if he is chanting jingles and commercials, rapidly blinking his eyes, bouncing up and down on his toes, making squeaking noises, flapping his hands and arms, or gnashing his teeth. When he is stimming, the stim is bigger than anything around him so it is hard to get his attention or interact with him. When he is stimming, it consumes him. He certainly is not going to learn anything while he is stimming. Stereotypic behaviors could be a magnet that draws bullying in Tate’s future as well. 

The longer a stim is “with” us, the more ingrained it becomes. One of the things Tate did as a baby and toddler was to fan the pages of a book. He’d get a book; the thicker the better, for him. He would sit on his bottom, put his knees up, balance the book on his knees, and begin fanning the pages at eye level. He could spend a large part of his day doing this. I had no idea why he liked to do it but he did and it wasn’t doing any harm, or so I thought. Now that I know what autism is I regret all the hours that I allowed Tate to “waste.” That time could have been spent learning. He was not absorbing information from his environment like a typically developing child does. He was not playing with toys and pretending. I knew things were not “right” but I had no idea what was going on. Hindsight is always 20/20.

Note: This seems to be one of my more controversial posts. A lot of parents think their children's stereotypic behavior is endearing and have told me so, often in very harsh words. Some say they have even been told by therapists and/or doctors that the stimming is something their child needs to do to express himself. That was not the advice I was given by Tate's therapists and doctors not was it encouraged in the books I read. Tate was born in 2001. I truly believe Tate is as high functioning as he is because of all the early intervention and all the constant education he was exposed to. He was not allowed to stim for long periods of time when he was small. Please, if you take offense by my opinions and/or the fact that I believe I helped Tate by discouraging the stereotypic behaviors, know I am not sitting in judgment of others who embrace stereotypic behavior. I have to do what I believe will benefit Tate the most and you have to do what you believe to be best for your child. I'd rather not hear from anyone who believes I did the wrong thing. I will not debate it with you. Thanks! Lisa

This post was written in 2012. You might like to read something more recent about a similar topic. Read Reciprocity