Interesting Stuff About Matt Man: Excessive Rigidity To Routine

Wake up at 6:15 AM.  Immediately undress and put on school clothes.  To the kitchen for Aldi-brand mini-wheats, a fried egg with hot sauce, and a cup of milk.  Brush teeth, shoes on, fill the backpack with the red folder and lunch box.  Coat on, hat on, backpack on.  Stand on the chair to see when the bus is coming followed by the announcement, “The bus is rolling,” when it makes it’s approach.  A giggly sprint to the bus, two steps up, “Good Morning,” and taking the same window seat, off he goes.

Bus returns at about 3.  “See you tomorrow,” two steps down and an immediate request for five animal crackers: not four, nor six, but five.  A brief period of playing outside or reading Berenstain Bears.  Half an hour of, “Daddy’s cooking chicken for dinner / You can have dinner in 10 minutes / I can wait patiently for chicken.”  Dinner, then homework which is motivated by five chocolate chips - not four, nor six, but five.  

Bedtime begins with a “pokey-poke,” the daily injection of HGH which he always assumes is going into his right belly.  Go potty, change into pajamas, Flovent, brush teeth, a quick prayer, and then get tucked into bed.  

Wake up at 6:15 AM and do it all over again.  Same thing every day.  This is what Evangeline calls Matthew’s excessive rigidity to routine.  Matthew, like other kids with Autism, loves strict adherence to a routine; in fact, he thrives on it.  Knowing what is coming next is the closest thing to a security blanket Matt-Man needs.   

We all have a routine.  Generally, my own day follows a typical pattern that starts with coffee and ends with a few strums on my Fender.  But if my daily routine, no matter how structured, is somehow interrupted, there is a high degree of probability that I will be able to roll with the change.  You may be the same way.  A deviation from your routine may be annoying but won’t ruin your day.  If Matthew’s routine gets interrupted, the hot sauce may literally hit the fan.

In general, Matthew likes to make his world smaller.  He often has a hard time relating to and understanding the world around him.  He does not intuitively interpret social cues.  His sensory input is often times out of whack.  To make matters worse, when he stims or perseverates or senselessly echoes what he hears, so much of the world doesn’t understand him, which multiplies the frustration.  The number one coping mechanism for Matthew is to make his world very small and very predictable.  

This is why he loves routine.  There is comfort in knowing what is coming next.  There is so much comfort that when he doesn’t know what is coming next, it makes him very anxious; perhaps a little violent.  

Here is an example of how attached he is to his routine: Our two older boys have swimming lessons every Tuesday.  One day, traffic was a little heavy on the ride home, so I took a different route down a side street.  Since the new route was not part of his normal routine, Matthew had a complete meltdown that ruined the rest of his day.  

This is also what makes snow days an absolute nightmare.  Most kids pray for a huge blizzard that paralyzes the city.  Those end up being lazy days full of cartoons, sledding, free play, and no homework.  If Matthew is expecting the bus, and the bus doesn’t come, his marriage to his routine refuses to let him simply enjoy the impromptu day off, and the pancakes hit the fan.

We combat this by trying extremely hard to prepare him for what’s coming next.  If we are going to take a family trip, we begin to tell him about at least a week in advance.  If we know there will be an off day at school, we will tell him, “No bus on Friday, we’re staying home.”  If there is any foreseeable deviation from his routine, we try to inform him as soon as possible and then try our best to give him a routine in it’s place.  And if tomorrow is a snow day, you'll know why our kitchen is covered in pancakes and hot sauce!

Interesting Stuff About Matt Man: Echolali-huh?

Echolalia is one of the fun new words that has entered our vocabulary in the recent past. Merriam-Webster defines it as “The often pathological repetition of what is said by other people as if echoing them.”  Of course, an echo happens when you talk and then hear your own words bouncing off of walls, or coming back at you from inside a cave.  Echolalia is when someone else echoes what you say to an exponential degree.  For the longest time, this is how Matt-Man talked, and still to this day his speech is very much echoing word-for-word the things we say.  It’s like he is a cave, and when we speak to him, our words bounce right back.

In general, this is how all people learn to talk.  No one learns language in a vacuum.  We all learn by hearing, making sense of what we hear, and then appropriating those words, repeating what we've heard.  Evangeline and I were always in competition with one another trying to get our kids to say Mama or Dada first.  We did this by saying Mama or Dada repeatedly until they could mimic what we said.  

Our 8-year old, of course, takes full advantage of this, teaching his baby brother words like poop, toot, and vomit.  And if the public schools today are anything like they were in my day, our kids will soon be bringing home a whole new colorful French vocabulary. 

While all children learn to talk by repeating what others say, children like Matt-Man who are verbal are prone to echo to an obsessive degree.  At one point, we would encourage his speech by saying, “Matt-Man, say ‘Mommy’”.  He would respond with the exact same phrase, word-for-word.

“Hey Matt-Man, let’s go for a walk.”

“Matt-Man, it’s time for a bath.”

“Hey, you need to go potty.”

All of these and more would receive the same “echolalic” response.  Again, all kids learn to speak by repeating words they heard from someone else.  Yet at some point, kids take their corpus of words and make it their own.  They begin to use those words in a context that makes sense and can respond appropriately to questions when asked.  I could have a conversation with my older son when he was 2.  Granted, it was a very basic conversation, usually about what was for lunch or Sesame Street, but he had taken the words he learned and used them to have a meaningful dialogue with me.  This is hard to come by for children like Matt-Man.

Hard to come by, but the amazing thing is that while they are prone to Echolalia, they have an ability to adapt their mimicking speech to the context they are in.  Much of Matthew’s speech is still imitation, but increasingly his repetition either answers a question or informs us about something that happened in his day.  

One day when he was about 4, on the car ride home from school Matthew said, “We’re going to take a walk.”  The next day it was, “You can’t have M&Ms until you do your independent work.”  And the next day was something different.  When we talked to his teacher, she said, “That’s how he’s telling you about his day.” 

By repeating verbatim "We're going to take a walk," he was telling us that on that day, he and his classmates went on a walk.  And the next day, he was telling us that his work was rewarded by M&Ms.  He still does this.  Periodically, he gets off the bus and tells us, “You need to go think.”  His teacher has a time-out chair in the classroom where students who make a bad choice have to go and think about what they’ve done.  “You need to go think,” is Matthew’s way of tattling on himself!

Other verbal children with Autism do something similar.  I met a woman whose brother (in his 20s) loves movies and has memorized movie lines.   That is how he communicates.  If he is asked a direct question, he quotes The Dark Knight as a way of answering the question.  Beyond being a clinical example of Echolalia, this is his way of adapting his language in a way that can communicate with others.

All of us learn the same way: hearing, making sense of what was heard, and making those words our own.  Children like Matt-Man do this to an excessive degree.  At first glance, it seems like Echolalia is senseless babbling, but it is simply their way of communicating.  These children are impressively skilled at being able to adapt their speech into a form of active and direct communication with others.  It isn’t that they can’t communicate, but they have learned to use their language skills in a way that makes sense to them.  Now all we have to do is learn their language.

Matt-Man's New Voice

We haven't posted in a while.  There haven't been any major happenings in the past couple weeks.  Just normal ups and downs associated with life :) 

I did get a really neat video of Matt this morning.  He is using his "new" loud, non-singing voice to tell me that he got an 'owie'.  He does revert back to a sing-songy echolalic phrase in the next sentence, but this is some amazing progress. 

Just so you can understand how big of a deal the video clip from this morning really is, I'm going to first post a video from a couple months ago.  This first video is Matt using his sing-songy traditional echolalic manner of talking.  This is what we heard constantly for months!  I didn't know if he would ever find his real voice.

And now, here is the clip from this morning.  I am SO proud of Matt!  His hard work at school is really starting to pay off.

“Echolalia” and Small Victories (and Small Victories)

“Echolalia” is one of the fun new words that has entered our vocabulary in the recent past. Merriam-Webster’s dictionary defines it as “The often pathological repetition of what is said by other people as if echoing them.”  Echoes can be fun.  There are some places where you can talk and then hear your own words bouncing off of walls, or coming back at you from inside a cave.  “Echolalia” is when someone else echoes what you say.  For the longest time, this is how Matt-Man has talked, and even to this day his speech is very much echoing word-for-word the things we say.  It’s like he is a cave, and when I speak to him, whatever I say bounces right back.

In general, this is how all people learn to talk.  Our infant daughter is learning to talk and does her best to mimic the consonant-vowel combinations we say to her.  Evangeline won the game of getting her to say “mama” before I could get her to say “dada”.  Pretty soon, however, her vocabulary will increase to about 10 words she can use on a regular basis and after that, her speech will boom exponentially.  All of the words any of us know were words that we heard someone else use and we found the right context in which to use them.

My 5-year old participates in “echolalia”; the annoying 5-year old version where a child repeats everything you say just for the sake of being annoying.  For instance,

Me: Nathan, what are you doing?
Him: Nathan, what are you doing?
Me: No seriously, what the heck are you doing?
Him: No seriously, what the heck are you doing?
Me: Stop it, that’s annoying!
Him: Stop it, that’s annoying!

Even verbal threats can’t stop him from this.  The sequence of “I speak” and “he obnoxiously repeats” usually ends when I say, “Nathan eats boogers!”  That is something he will not echo.

While all children learn to talk by repeating what others say, and while other children repeat what you say just to get on your nerves, Matt-Man echoes to an obsessive degree, as do many verbal Autistic kids.  It was cute to begin with.  We would encourage his speech by saying, “Matt-Man, say ‘Mommy’”.  He would respond with the exact same phrase, word-for-word.

“Hey Matt-Man, let’s go for a walk.”
“Matt-Man, it’s time for a bath.”
“Come and get your diaper changed, buddy.”

All of these and more would receive the same “echolalic” response.  Again, all kids learn to speak by repeating words they heard from someone else.  Yet at some point, kids take their corpus of words and make it their own.  They begin to use those words in a context that makes sense and can respond appropriately to questions when asked.  I could have a conversation with my older son when he was 2.  Granted, it was a very basic conversation, usually about what was for lunch or Sesame Street, but he had taken the words he learned and used them to have a meaningful dialogue with me.  This has been hard to come by for Matt-Man.

He is steadily improving, even within the last few months (now that he is almost 4).  Much of his speech is still echolalia, but more and more his repetition is in context.  He clearly repeats words and phrases he has heard us say, but he uses them at the right time.  He is exceptionally food-motivated, and the only time he will voluntarily engage us in conversation is when he wants a snack, or lunch, or a snack, or a drink, or a snack.  We used to say, “Do you want some peanut-butter toast?” and he would answer, “You want some peanut-butter toast.”  It was only a few months ago before he would switch pronouns and say, “I want some peanut-butter toast” when asked.  And now, he doesn’t even need to be asked.  Instead, he will tell us, “I want some peanut-butter toast.”  We had never been more ready and willing to satisfy a child’s desire for a snack than we were the first time he, on his own, asked for some food.

It took no time to convince him to talk when motivated by food, and it seems, much to the chagrin of mom and dad, that he echoes those things we would prefer he didn’t remember.  For instance:

Me, yelling at the TV: That stupid idiot!  If you’re a major leaguer, you should be able to turn a routine double-play!
Matt-Man: Oh no, that stupid idiot!

Finally, there are those things we would give a kidney to hear him say and no matter how hard we try, he simply will not budge.  We have tried for the longest time to get him to say, “I love you, mommy,” or “daddy.”  It’s funny; I could probably get him to recite the Pledge of Allegiance backwards if it involved receiving a Twix, and just about everything he hears throughout the course of a day, he echoes, but if we try to fix his mind on loving mommy and daddy, he stares at us stone-faced.  He can copy his brother when he says, “Guess What?  Chicken-Butt!” but I couldn’t pay him to say, “I love daddy,” even with a Twix.

However, just the other night, we got what has been the biggest, most uplifting surprise to date.  We follow a pretty regular bedtime routine: clothes off, go potty, jammies on, brush teeth, hop in bed, pray with mom and dad, kiss and hug goodnight.  This is usually where we push the hardest, “Say, ‘I love you mommy’. . .” met with the same stone face every night.  That particular night, nothing was out of the ordinary.  The boys undressed, went potty, put their jammies on, brushed their teeth, hopped in bed, prayed with us, and got a kiss and hug from us.  And as always, we tried to get Matt to say, “I love you mommy/daddy,” and not surprisingly, we were met with a stone face.  Nevertheless, we told Matt that we loved him, and told Nate the same.  That’s the moment when we had the biggest surprise, at least in Matt’s life.  Totally unprompted, and without us having to offer him a Twix, Matt-Man said in the clearest, most distinct voice, “I love you, Nate.”

Echolalia, for sure, but echolalia with incredible meaning.  Echolalia, but genuine and sincere.  Echolalia, but Matt-Man meant it when he said, “I love you, Nate.”  The dad in me would love for that to have been my name, but not only did Matt-Man echo in context, he also expressed affection for his very best friend—something that has been incredibly hard to come by.  I am satisfied with that.

Echolalia can be cute.  It can also be a bit frustrating.  Sometimes I wish I could just chat with my kid, about bugs, snowmen, baseball, or cars.  I can’t do that.  I have good reason to hope that some day I will be able to do just those things, but if God were to forbid him ever to speak another word, we will always have the memory of those unprompted, sincere words from one brother to another, “I love you, Nate.”  It was meaningful to us, his parents, and you bet it was meaningful to Nathan too!  So frustrating as it may be, we celebrate the small victories.