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.

Interesting Stuff About Matt Man: He's "Sense"-ational!

Once in a while, you come across a thing in life that you didn’t know was a real thing until you met someone who had that thing.  Not that you scoffed at that thing, you just weren’t even aware that thing existed.  Sensory Processing Disorder is one of those things.

The completion of even life’s most mundane tasks requires all five senses and their ability to communicate with your brain in a way that produces appropriate responses.  If you touch a hot stove, the heat on your fingers travels through the nervous system to the brain which sends back to the hand the impulse to pull the hand away from the heat.  The brain also sends the impulse to your mouth to speak “French”.

Sensory Processing problems happen when sensory inputs get log-jammed somewhere in the nervous system, prohibiting an appropriate response.  Many children with Autism either under-respond to stimulus (their hand could be on fire and they wouldn’t know it) or over-respond (a slight change in temperature is literally painful).  The inability to appropriately respond to stimulus makes things like balance, physical touch, eating certain tastes and textures, and general performance of simple tasks rather difficult.  

Like many other kids on the spectrum, Matthew over-responds in some areas and under-responds in others.  Sounds are things that he can be sensitive to.  If we’re in a crowded place with a lot of hustle and bustle, the noise can be literally painful.  Lights don't usually cause him trouble, but a combination of lights and sounds can cause a meltdown of biblical proportions.  The display of expensive watches at the jewelry counter of a department store has been saved more than once thanks to noise-canceling headphones.  That and a quiet room with the Berenstain Bears is usually enough to bring him peace and tranquility.

On the other side, Matthew under-responds to touch and taste.  For some, just a gentle pat on the back can be painful.  By contrast, Matthew loves a good hug.  If he is really weepy for no good reason, a good squeezie squeezie is enough to recalibrate his system.  In fact, there have been several times when at small gatherings Matthew continually circled the living room and gave hugs to everyone again and again and again and... .  If you are sad and in need of a warm embrace, Matt is your man.

Small wonder, then, that his favorite clothes are his Under Armour.  They are meant to be a little constricting anyway, and when you consider that what he calls his “tight shirts” are two sizes too small, it’s like getting a perpetual hug.  

But by far, his favorite method of sensory input is spicy food.  Taste seems to be a sense that he under-responds to, and we can somewhat realign his taste buds with a little kick.  Matthew single-handedly got his brother to eat our salsa for the first time.  Nathan didn’t even want to try it because it had jalapeños in it.  When I offered it to Matthew, and he had three helpings, Nathan couldn’t be one-upped by his little brother; So he had a whole bowl full, even though he didn’t want to, only to show he was as tough as Matt.  Since then, Nathan is no longer interested in proving a point.

More than loving pancakes, Matthew loves hot sauce.  Frank’s Red Hot’s motto is “I put that (splat) on everything” and Matthew does.  Eggs, Mac ‘n Cheese, toast, chicken, fish, hot cocoa, waffles, pizza, corn on the cob, salsa ... you name it.  Nothing is off limits when it comes to hot sauce (except pancakes).  We even used to feed it to him by the spoonful At His Request.  

The point of all this is, for a child with Autism, or someone who has Sensory Processing Disorder, they may over-respond to some stimulus and under-respond to others.  So if you know an Autistic kid, do not, under any circumstances, give him or her a hug, high-five, or pat on the back until you know for certain they do not over-respond to touch.  If you see Matt-Man, the only thing you can do for him that will be better than giving him a big squeezie-squeezie is if you give him food and put a little splat on it.

Matt Man wearing his favorite shirt

Interesting Stuff About Matt-Man: Stimming

Stimming is another fun word Evangeline and I have added to our vocabulary.  Apparently it is more rare than Perseveration.  When I looked it up in Websters, it said, “The word you’ve entered isn’t in the dictionary.”  

Fortunately, Wikipedia knows everything.  The community of “wikiologists” have defined it as “the repetition of physical movements, sounds, or repetitive movement of objects.”  Further, “It is considered a way which people with autism calm and stimulate themselves,” with behaviors including hand flapping, rocking, head banging, and repeating noises and words.  Matthew has had lots of these, and they take different forms.  

When he was just a baby first learning to crawl, he would crawl with the top of his head rubbing on the carpet, apparently because it felt good on his head.  Beyond being a little bit adorable and giving him funny hair, he could power a small village with the static electricity he created.

His all-time favorite toys are cars, trucks, and trains.  There was a time when he could literally spend hours spinning the wheels of cars, just because he liked how it looked.  He still does that to some degree, running Thomas the Train back and forth.  Things like vent grates, ceiling tiles, and even rows of threads on a carpet always catch his attention.  

By far, the greatest stims Matthew has are vocal.  He used to be monotone, and I mean that literally.  Once he was speaking and out of curiosity I went to the piano and discovered that he carried normal conversation in the note “D”.  I would confirm this periodically, and it was so predictable that if I wanted to, I could tune my guitar by the sound of his voice.  

Since then, his range of tones has expanded.  He likes speaking with a deep gravel throat until his voice sounds like the cafeteria lunch-room lady who you were certain smoked three packs a day.  Then he goes to the opposite vocal range and in a high-pitched squeal, will say, I love my Mickey Mouse!

But more than what his voice feels or sounds like, what brings him the most comfort is the repetition of phrases.  When he was just learning to talk, he would start every sentence with, “Oh no...”

Oh no, we’re out of milk

Oh no, it’s time for bed

Oh no, we’re having pancakes for dinner

He has eliminated that, but has added more calming phrases, such as:

I’m sorry, we can’t have pancakes right now

You can have pancakes in 10 minutes

You’re going to get your pokey poke in your right belly

First you have to get your pokey poke, and then you can have pancakes

I can wait patiently for pancakes

These aren’t just phrases he uses often; he says these to a perseverating degree.  What is ironic is he doesn’t seem to understand that saying, “I can wait patiently for pancakes,” fifty-two times in a thirty-minute span is not, in fact, waiting patiently.

Vocal stimming is difficult.  We’re glad he speaks, even if all he can communicate are his immediate wants and needs.  But when you hear the same phrases multiple times over a short duration, it gets to be rather grating on the nerves.  We had waited so long for him to learn to talk.  Now, when he gets stuck in a vocal rut, we think in our minds, Just shut up about being patient for pancakes or I am going to bash this stove with a pickaxe!

Then on the other hand, he speaks.  While we complain about vocal stims, there are plenty of parents of children with disabilities like Matt’s who would give their right arm to hear their kid say Mom.  So his vocal stimming gets real old real quick, but they are calming for him, and we don’t take for granted that while the vocal stims can be annoying when he speaks, he speaks.