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.  

Interesting Stuff About Matt Man: Perseveration

Since this is Autism Awareness month, I thought throughout the month I'd share some things about Matthew that are different about him.  Evangeline and I have a whole new vocabulary we didn’t know existed.  We now have full use of words like Perseveration.

As you may be able to deduce, Perseveration is similar to Persevere.  Good Old Merriam-Webster defines it as, “continuation of something (as repetition of a word) usually to an exceptional degree or beyond a desired point.”  That is, Matthew gets something in his head and he can’t get it out of his head, and he talks about it until you think your own head will explode.

The other day, we were at a restaurant, and when Matthew got a menu in his hand, for some reason, the menu brought pancakes to his mind.  From that moment on, his world revolved around pancakes.  He couldn’t stop thinking about pancakes  All he wanted for the rest of the day were pancakes.  The restaurant we were at didn’t serve pancakes for lunch, so his mini corn-dogs were simply that thing he had to do before he could get pancakes for dinner.  Through the whole meal, he asked for pancakes.  On the car ride, he kept telling us, “You want pancakes for dinner” (often he refers to himself in the second person; he meant “I want pancakes...”).  By the time the car ride was over, we were well beyond a desired point for talking about pancakes

Daddy’s making pancakes

Mommy’s going to buy some pancakes

Pancakes, where are you?

You can have pancakes in 10 more minutes

The pancakes are in the fridge

I can wait patiently for a pancake

Where’s the syrup for the pancakes?

You don’t want hot sauce on your pancakes!

We had lunch around 11.  We finally ate dinner at 6.  That means for 7 solid hours, Matthew perseverated on pancakes.  By dinner time, with respect to pancakes, we had reached the 'roid-raging level of "exceptional degree."

It isn’t always pancakes.  Sometimes it’s mini-wheats.  Sometimes it’s hot sauce.  Today in particular, it's bacon.  Usually his perseveration is food-related.  We often try to redirect his attention to something else - anything else.  At times this works.  Yes, Matt, we will have pancakes for dinner.  Let’s go play trains together.  So we play trains and I ask, Where is Thomas the Train going?  Where else... To the grocery store so he can get pancakes!

So we gave in and had pancakes for dinner.  The tradition in our home is “Friday Night - Breakfast Night,” so pancakes is not out of the ordinary.  And all throughout dinner, for Matthew, pancakes was still the topic of conversation:

Can I have pancakes please?  

You want some more pancakes!

You have syrup on your pancakes!

I love pancakes!

Then when we cut him off after 4 pancakes, he said, 

You can have pancakes for breakfast!

Up to this point, in this little post, I have used the word “Pancakes” 33 times.  And that, my friend, is Perseveration!