Monday, April 30, 2012

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.

Saturday, April 28, 2012

Its a mad, mad world.

Our family loves old movies and there are probably not very many we have never seen.  We love so many of the older actors: Jimmy Stewart, John Wayne, James Garner, Doris Day, Cary Grant, Rock Hudson, Don Knotts, Fred McMurray, Jim Neighbors, the list goes on and on.  We also love musicals and have a lot of soundtracks too.  Our older kids grew up playing the game “guess what movie this line is from” with us and now we play it with the younger kids.  So, even without autism, Tate would probably have the love of movies and movie dialogue he has. 

Because we all have this in common, our family uses movie scenes and characters often to reference things.  When one of us hears the line “I can’t see” in almost any context, we repeat it in the voice of Jim Backus (Thurston Howell the Third).  It is from a scene in “It’s a Mad, Mad, Mad, Mad World” when he is flying a plane and becomes blinded so Mickey Rooney has to take over the controls.  This is something we do constantly with all kinds of movie quotes.  Shawn uses them often to get a laugh from me or the kids.  We love it.

One of Shawn’s favorite television shows is the “Andy Griffith Show.”  Barney Fife and Floyd, the barber, are two of our favorite characters but the character that has always been dearest to our heart is Ernest T. Bass.  Ernest T. is a wild man from the hills.  He was in very few episodes but we have seen those few episodes dozens and dozens of times.  I said all of that to tell you this:  The past few years, every time I watch Ernest T. Bass, I see Sydney (the Sydney that has not yet had her medicine in the morning.)  It is not the way he looks, of course; but the way he acts.  If you have never seen Ernest T. Bass, you can watch a few minutes of him on U-tube to get an idea.  He jumps around and talks nonsense.  He laughs wildly and irritates everyone around him.  He throws rocks through windows when he wants to get someone’s attention.  In one episode he talks about saving for a gold tooth.  He wants to knock out two teeth and get a gold one, right in the middle, so it will shine and be pretty.  Ernest T. does not think things through.  He has no impulse control.  I wonder if Ernest T.’s mother had her own moonshine still out back.  I also wonder if the writers were modeling the character after someone with Fetal Alcohol Syndrome or ADHD.

This morning, Sydney got up before me.  She usually does on Saturdays.  It makes no sense because I wake her up Monday through Friday at 7:00.  On Saturdays, when she could sleep in, she is up much earlier.  Her room and mine are adjoined and she is supposed to call to me and ASK if she can get up.  She does not often remember.  As usual, she had everyone in turmoil this morning.  Tate is always up at the crack of dawn and he cannot defend himself against her so she was tormenting him.  She made sure the other kids were awake (although they would have rather slept in). She found a bowl of popcorn from last night and spilled it.  She got a glass of water and spilled that.  She let her bunny out of the cage and shared an apple with her.  YUK.  She kicked her new soccer ball in the living room and knocked over a picture frame and the telephone.  All this happened at lightning speed too, one thing right after the other.  An hour later, after her pills took effect, she was no longer doing impressions of Ernest T. and she was calm and sweet.  I am so thankful for those two pills and I can hardly remember what it was like before we got those two prescriptions.  Those years are a sort of blur.  I have a vague memory though and it was not easy.  Ernest T. could have used one of Sydney’s pills; but then what kind of television character would he have made?   

Note:  Please do not misunderstand.  Comparing Sydney's behaviors to that of a silly fictional character is not meant to be ugly.  I love my little girl and she is a very valuable member of our family. 

Friday, April 27, 2012

Motor Mouth

Once in a while, my quiet boy with autism disappears for a little while and a chatterbox takes his place. It is usually when he is very excited about something. When we went to pick out our Xmas tree this past December, Tate talked more than I had ever heard before and it lasted for hours. We have repeatedly noticed when Tate runs a fever he turns into a motor mouth too. Tate was very eager because we were going to see “Pirates, Band of Misfits” at the theater. He told anyone who would listen about his plans to see the movie after school. He told most people more than once I think.

Tate, third grade
On the way to school this morning Tate pointed down the road, in the opposite way we were turning, and said, “So, what is down that road, the zoo and the camera store?” Of all the things he could ask me about he picked “the zoo and the camera store.”  It cracked me up. I told him that we could get to either a zoo or a store to buy a camera, by going in the direction he pointed. Questions beginning with where, what, why, when, or how, are a big deal around here. Most toddlers ask “why” dozens of times a day, and wear their parents out with questions. Tate did not. Now, he does occasionally ask questions. When he does, it takes me by surprise because I seldom hear him do it. The autism is never more “real” to me than when Tate does the things that he should have been doing all along.  It is like: I don’t know what I am missing until I have it and then lose it again.  When Tate becomes a chatterbox for a few hours, or even a few minutes, it just reinforces for me, all the things he (and I) missed out on. 

Tate was pretty talkative this morning at school. They had a “fun day” today and there were stations with activities outside and in. Tate initiated a conversation with one of the parent-volunteers, which is a pretty big step. He asked her, “So, did you go to college?” She said she had and then Tate asked her another question about college. It was not the most appropriate thing he could have started a conversation with. It was pretty random, but I’ll take it. We have been working hard and practicing conversation skills with lots of coaching, and it is paying off. Tate’s team at school has been coaching him and they practice with staff members every day. They have spent time talking with Tate about appropriate questions to ask and “weird” questions people would not ask each other. This all has to be taught because Tate will not pick it up from his environment like his peers have. 


We were standing in line to buy our movie tickets this afternoon when twin boys, a little younger than Tate, came in with a young lady, probably a sitter. The boys both had autism and caused quite a ruckus while waiting in line. It was very tough for the adult to buy tickets and keep the boys both with her. They were everywhere at once, touching anything they could reach. I did not pity the boys or the caregiver but I did admire the caregiver for bringing the boys to the theater. Watching those boys reinforced for me how blessed I am. Tate has so many skills that many with autism do not. I have three boys and three girls that do NOT have autism. I can only imagine how much more challenging things would be for me if two of my children had autism. The Center for Disease Control released a new statistic last month: 1 in 88 children have autism now and it is 1 in 54 for boys. If autism does not directly affect you now, it is probably just a matter of time. It is important to educate yourself about autism, more than ever before. 

Another post you might like to read: A Sack of Potatoes

Find us on Facebook at Quirks and Chaos. Or, if you liked what you read and 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! 

Thursday, April 26, 2012

breaking the rules

Flexibility is not easy for a kid with autism. Tate wants rules written in stone. You do not bend them, tweak them, change them, or rewrite them. SO… last night when I chose to follow a couple of cars into town, THROUGH the “road closed” barriers, I paid. It would have been easier to go the extra two miles, using the detour, in the end. I explained over and over (as Tate protested) that the road crew had gone home for the night and the road was still in perfect condition to use. If he had better language skills I know Tate’s argument would have been “You cannot have it both ways Mom. You finally have me convinced that detour signs are not evil, and roads closing are okay. You teach me these things and then you amend it all?” See a previous post about our detour into town by clicking on this link: Under Construction 

Tate is rarely without a hat.
Tate lives in a black-and-white, rule bound world. This is typical of autism. There is no gray allowed. The few gray areas Tate can tolerate have been taught and reinforced over and over so they are also a sort of black-and-white rule. “You cannot wear your hat in the church building” was a black-and-white rule. Gray came when he did not have to take his hat off if we stopped at the church building to work or clean, and it was not a time of worship. He “wrote” a new rule he could put in his black-and-white mind then, and the gray area then became a black-and-white rule he could follow too. This way of thinking affects everything for Tate. It is why he has such a hard time learning that some words have two different meanings. Last night, someone said “I want to train for a half marathon.” Tate couldn’t identify the word “train” in that sentence, nor does he know what a marathon is. He made a comment about “a train,” thinking he was adding to the conversation. A train runs on rails and is not something you can do, in his mind. I defined the word as a verb for him, but I am not sure he ever really understood. It took several explanations before Tate understood the word “chilly” could be used as a word describing the temperature, but it is also a food. And now people can even tell him to “chill out” when asking him to calm down!

Think about what a kid like Tate goes through in a typical day. Can you imagine how hard it must be to sit in a room full of peers that seem to understand all kinds of things that you do not? Can you imagine the confusion when an adult is lecturing on a topic that you do not understand and they keep using words that have double meanings? We pass a test and we pass the salt. We haul out the trash and we walk down the hall. We keep the beat in music and we grow vegetables called beets. We would never beat a pet but it is a good thing to beat everyone else in a race. All these things are learned fairly easily by a child with a typically developing mind. They are like sponges. Autism robs a person of this flexibility and “absorbency.” Even if Tate were able to decipher all of the words and his brain had all of them defined correctly, we would still have to slow way down and let him process things at a slower pace. Tate’s processing is so slow that he gets lost in all the language if people talk very fast. I think that is why he “gives up” and just seems to stop listening sometimes. He is living in a world of language that does not make a lot of sense, and surrounded by adults that keep changing the rules on him. 

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! 

Wednesday, April 25, 2012

Homework

Written April 25, 2012

I know of a few kids with autism that boycott homework. It is not always necessarily the work itself, but the fact that it is SCHOOL work, coming HOME. SCHOOL work belongs at SCHOOL and doesn’t have anything to do with HOME. I heard recently of a mom who disguised homework for her son with autism by calling it a different name and it worked for a while for that family. Tate hates homework. He compartmentalizes everything and cannot stand for anything to be out of place. Bringing school work home breaks his “rules.” He does not often have homework because his teachers know how much he hates it. He does homework when he has it though. It works best to save it until morning, before school, if it is a short assignment. It doesn’t “ruin” his whole evening that way. He protests the loudest if I suggest he do it immediately after school. Of course, that is how my other kids have always done it. They come home, do the homework, and then have the rest of the evening. Not Tate. 

A few days ago, Tate had some homework. His para told me Tate had taken it out of his backpack and tried to leave it at school a couple of times and the para made him put it back in both times. Tate finally said “But if I take it home, my mom will make me DO it.” HA  That IS the idea, kid. 

Tate is in fourth grade but he has math in the resource room and has been doing second grade math this year. Most of his math lessons, for years now, have revolved around coin recognition and counting money. Word problems are out of the question because of the language involved. Processing all that language is impossible for Tate. Figuring out the operation to use, what information is needed and what information is not needed to solve a problem is too much. I hope someday he will be able to sift through all those things.

I am excited though! This week, Tate started doing multiplication. Since he only just began adding two digit numbers and “carrying” from the ones place to the tens, I was amazed. Multiplication? I didn’t think we’d see multiplication for another year or two, at least. Yes, I know, jumping up and down because a ten-year-old mastered zeros and ones on the multiplication table, may seem ridiculous. However, he was only adding single digit numbers without a calculator a few weeks ago; and he doesn’t yet subtract two digit numbers without a calculator. After school this afternoon, I looked in Tate’s backpack and saw he had worked on multiplying by twos today. I asked him to solve a few multiplication problems while we drove home. He did four or five correctly, missed a few, and then said “What’s with the math in the car?” I suppose he thought it was too close to HOME work. I should have called it “car math” and tried to get away with it that way. HA!

Disguising things with a name change won’t be working for us most likely. Tate was recommended for summer school (also called Extended School Year or ESY) for the first time. I knew if I called it summer school he would be horrified so I introduced the idea as a “math camp” at his school this summer. He was still horrified. He’ll be fine…. eventually. Ha

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! 

Does it hurt?

I have often heard that people with autism feel things differently than we do. I do not know if this is true or how it could ever be measured and tested. However, I do know that Tate responds to pain differently than I do. Tate cries occasionally out of fear or frustration, but I do not remember the last time he cried because he was hurt. I think he was still a toddler; but by age three he no longer cried when he was in pain. I know he feels pain but he seems to be able to manage his reaction to it. He has had many ear infections over the years and I just had to guess at when to take him to the doctor. I have taken him when his ears were fine and I have taken him when his ears were horribly infected. I know when Tate has a sore throat because he drools and his voice sounds differently but he does not voice his discomfort. It is much like having an infant that cannot tell you when and where they hurt. Once, when Tate was in preschool, he stood on hot concrete with bare feet until the bottoms of his feet had blistered. The blisters were the size of quarters. He could not walk for two days after that but he never really complained about the pain. I know he felt the pain because he refused to walk but he did not cry or whine. Even when I know Tate is hurting, if I ask him he is almost always going to tell me he is fine. I do not know why.

When Tate is upset, his face gets red and splotchy. He will stim a lot, and even hyperventilate but he cannot (or will not) communicate about what is bothering him very effectively. I have to “read between the lines” usually. He might make a comment like “I will play with this tomorrow” and I notice his face is turning red. Then I guess: he wants to finish this game tonight, before I make him go to bed. He won’t say “I am almost done. Can I finish this game before I go to bed?” Or, he might say: “Sydney is playing with that car” when he should say “Sydney just took that car out of my hands and I want it back.” I have tried and tried to make him understand that he has to TALK TO ME so I know what he wants and what he is upset about. He just doesn’t understand why I don’t already know. It is the whole “theory of mind” thing again. He doesn’t know that I don’t know what he is thinking and he doesn’t understand that I don’t have the same thoughts he is having at the same time. He does not understand: If I didn’t SEE Sydney stealing the car from him then I don’t know it happened and he has to tell me. He just doesn’t “get it.” If he is going to tell me a story, he doesn’t set it up. He might begin in the middle, thinking that I already know the setting and the background that I need to know to understand what he is talking about. It is like reading a book and starting on Chapter ten when I am trying to understand something he wants to talk to me about. Often he gives up out of frustration if I ask him questions and then I never get to know what he wanted to tell me. He will NOT repeat himself and he will NOT work at helping me to understand what he means. 

I got off topic…. Back to the pain threshold:

Sydney does not have autism but Sydney’s pain threshold is extreme. When she was a toddler and learning how to walk, she fell down and busted her lip almost daily. She never flinched. I would see blood and wonder how she could stand it but she did not seem to feel a thing. I taught her to say “ouch” when she fell and I had to teach her to come and get me if she saw blood. Even after she learned to say “ouch” when she fell she still didn’t seem to care that she took a hard fall. I have never known anyone as tough as Sydney. She can take quite a tumble off of playground equipment or bump her head really hard and not even stop to notice. She gets goose eggs and bruises and doesn’t even know where she got them in her rough play. However, she has become quite a drama queen about blood now. She has learned to love attention and she plays up the smallest blemish these days. If there is something more exciting going on around her then she still ignores blood though. Ironically enough, running a comb through a tangle in her hair will send her through the roof. I cannot figure that one out. Ha!

Tate and Sydney 
Tate and Sydney can both ignore cold to a certain degree too. When I am freezing and telling them to bundle up, they want to go outside without a jacket.  Sydney has no “meat on her bones” so she almost turns blue before she wants to come in out of the cold. If she plays in the snow she will stay out and ignore cold fingers. I have to monitor and keep dry mittens on her. I've even put hand warmers in her pockets or inside the mittens with her fingers so she can stay out longer. Twice I was almost sure her fingers were frost bitten when she was little. As we held her hands under room temperature water trying to slowly warm them she was screaming. So... She does feel pain, eventually. Now in the winter I plug in a heating pad when she goes out and call her in once in a while to warm her hands. She just cannot monitor the cold and know herself when she's had enough. She can either ignore the pain or she does not feel the pain until it is intense. I am not sure which. 


And speaking of temperatures, Sydney loves hot water. I will not, and cannot, make her bath as hot as she wants me to. We have the same conversation every time. Sydney says, “Make it really hot, Mom.”  I say, “Sydney I cannot run a bath any hotter or you will burn.” When I run water that would be just right for any of the other kids, she complains that it is cold. I suppose it is just like any of her other strange sensory needs and it all comes from her birth mother’s alcohol consumption. I hope she outgrows the love of hot water soon though because I may never be able to allow her to run her own bath. I can just see me following her into the bathroom when she is in high school to test the water (NOT). 

If you liked this post, here is one similar: Under Construction

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! 

Monday, April 23, 2012

Hoarding

This blog post is about my sweet baby girl Sydney who we adopted from Russia. She has Fetal Alcohol Syndrome (FAS) and ADHD. 

I have become accustomed to finding very strange things hidden under Sydney’s pillow when I straighten her bed each morning. This is her favorite hiding place, although she has others. She “collects” things and it does not matter to her if it is dirty or clean or if it belongs to her or not. Since Kindergarten, one of her favorite collectibles is mulch from the school playground. It is made from old tires so it is rubbery and fun for her to twist and squeeze. Sydney comes home with her pockets full when she can. A staff member is helping me by checking her pockets but she is creative and finds new ways to sneak it home. I find mulch in the washer and dryer and all over the house. It has clogged my vacuum before and I even have some in my purse and my own coat pocket. 


I often find coins, sticks, food wrappers, puzzle pieces, feathers, small toys and old food hidden under Sydney’s pillow. This morning, it was a hand full of candy wrappers, a video game player with her brother’s game loaded in it, one of her sister’s games (one she is not allowed to borrow), and her own toy i-pad. I talked to Sydney about the games and getting permission to play them. Then I put the games away and sent her to throw away all the wrappers. No amount of talk or intervention has deterred Sydney’s kleptomania in any way so I am just living with it at this point. I am unsure if it is part of her anxiety disorder diagnosis and some kind of obsessive/compulsive need or not. I know that experiencing hunger results in hoarding in many adopted children. Sydney was neglected and often hungry as an infant; although, I am not sure how much of that sticks with a person if it was experienced so young. 

In Russia at 10.5 months
When we picked Sydney up from that orphanage in Russia, all those years ago, I was able to talk to the caregivers through an interpreter. I had formula and a diaper bag with me. I showed them a four ounce bottle, an eight ounce bottle, and a couple of different nipples. I was asking what type of bottle and nipple Sydney was used to using. I have six biological children and know enough about babies to know what a difference those things can make. They told me she was used to being fed four times a day and I should fill the larger bottle to the top, giving her eight ounces at a time.  Sydney was almost one year old but only sixteen pounds. I knew from the medical history we had seen on her that she spit up constantly and they were calling it reflux. I was very surprised that a baby with such a small stomach and diagnosed with reflux was being given eight ounces in one feeding. I also didn’t think a baby so young should be fed only four times a day, especially if she spit much of her food up. That day, I started four ounce feedings every three hours and I never saw any reflux problems. Those first few days were heart wrenching for me, knowing all the formula she had spit up that first year because she had been over fed, and imagining how hungry she was until the next feeding so many hours later. When I showed Sydney a bottle she would begin to hum. She never cried at first, only hummed. She would drink like she was starving and then whine when the bottle was empty and fall asleep. Sydney held on to her bottles with a death grip. I tried giving her Cheerios and other foods most one year old babies like. She would not let me put anything in her mouth except the bottle and if I managed to get it past her lips it shot right back out. It took weeks before Sydney would eat a cracker or a Cheerio. Once Sydney started eating solid food though, there was nothing she wouldn’t eat and no new food she would not try. Sydney’s favorite foods now are so different than most kids. She loves pickled beets, okra, broccoli (raw or cooked), cooked carrots and vegetable soup. She’d rather have a can of green beans than a cookie for a snack. Because her doctor is always worried about her weight, she actually suggested to me that we let Sydney have vegetables only AFTER she eats a donut or a piece of cake for a snack. We have been known to put a donut in front of her and a bowl of vegetables out of her reach so she gets the calories before the preferred food. It feels so wrong. Backward. This is one of the reasons it surprises me to find Sydney hoarding candy and food. She has access to a variety of foods throughout her day and she is almost never denied candy or anything else at home. Sydney’s IEP even allows her access to frequent snacks at school. I have a box of things available for her to snack on in her classroom: crackers, nuts, cookies and fruit. The fruit and nuts go faster than the cookies every time.  
Always eating but rarely gaining weight

  
Irony surrounds me. Sydney eats constantly and is under weight, while Tate is extremely finicky and towers over his classmates and teachers. If I could only mix the two kids, I would come up with average weights and typical diets for both.

If you enjoyed this and want to read more, click here: Never A Dull Moment

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! 

Thursday, April 19, 2012

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