Matt-Man's Going to Summer Camp!!

Matt-Man works harder than any other 6 year old I know.  In fact he's been forced to work hard since starting therapy full-time as a 3 year old.  He has to.  Simple tasks of daily living and communication are not simple to him.  He has had to invest many hours to learn each task of life slowly and as a whole series of smaller tasks.  Matt-Man doesn't get summers off.  He spends his summers in therapy or summer school, working hard all day.  Well, this year will finally be different.  For the first time ever, Matt is going to summer camp!

The Special Recreation Association in our area provides a summer day camp that is specifically designed with autistic children in mind.  The days are carefully structured and aides are available to help the campers out.  He will spend his days enjoying music, art, games, socializing, and swimming and his evenings at home with us.

We are so thankful for this opportunity.  We are considered non-residents of the districts served by this camp and had to remain on the waiting list until all residents had registered, praying that there would be a spot left for Matt-Man.  We were ecstatic to get the call that he was in.

Please pray that this is a good summer of fun and growth for him.  Matt-man has very few friends.  Not because he doesn't like other kids but because he doesn't know how to interact with them appropriately.  I've often watched him try to initiate contact with other kids his age only to get funny looks and be ignored.  I would love to see him develop friendships and better social skills this summer!

Matt-Man with his baby brother.  He is becoming a good playmate!

What's Helpful, and What Isn't

What often happens with blogs is that one writer assumes the duty of speaking on behalf of an entire community, even when the community hasn’t granted that one the authority do to so.  For me, whenever I see an Evangelical Christian saying on behalf of other Evangelical Christians something I would never say (like, Vote For ....), a small part of me throws up on the inside.  

So in what follows, I do not presume to speak on behalf of the entire community of special needs.  Our reason for writing this blog is very narrow: we want a place to share our personal experiences, and for you to get to know Matthew.  I am not the voice of authority, so please do not interpret this as “What All Dads Of Special Needs Children Want You To Know.”  We are hardly experts on Matthew, let alone the entire world of Autism and 15q24. 

When people hear we have a special-needs child, there are various responses.  Very few of them are intentionally hurtful and bigoted, and I refuse to dignify those by writing about them any further.  Most of the responses are wrought with good intentions, even if those good intentions fail to land.  Some offers of advice, comfort, or encouragement I have found to be a little less than helpful:

• You have a son with Autism?  Oh, my sister’s husband’s uncle’s neighbor’s son has Autism too (I appreciate the attempt to relate, but even my experiences with Matt are different from another dad’s experiences with his kid. Don’t pretend you know what it’s like)
• There’s no such thing as “normal” (When my 14-month-old has better fine-motor skills than my 6-year old, that’s not normal)
• Someday you’ll miss this (This seems more like an attempt to guilt me into enjoying the harder parts of parenting. It may be true, but is entirely unhelpful in the present)
• Have you tried this diet/therapy/insert-crunchy-advice-here? (It’s hard enough to dress my kid, let alone research the gamut of fad-diets)
• God doesn’t make mistakes (Really? Then why did Jesus bother healing a man who was born blind in John 9?  Why would he bother healing anyone for that matter?)
• God gave you a son like Matthew because he knew you could handle it (No I can’t)

I have never found any of these to be helpful, but I also recognize these are all given with good intentions.  I have learned to be extra patient because these responses, though they may be unhelpful (and even at times, hurtful) they are nevertheless given with sincere love and a desire to encourage, relate, and even join us on the journey.  So I do not belittle the honest attempts made by good people to stand alongside us.  On the other hand, what follows are some things we, personally, have found to be helpful.

How’s it going?  No seriously, how are things going in your home?  

Just the other day, a friend genuinely wanted to know what was going on and didn’t buy that things were “fine.”  After not letting me leave until he pressed further, I explained to him that life with Matthew is a bit like taking two steps forward, one step back.  This particular month has been “one-step-back.”  The entire time I shared that with him, he didn’t stop looking into my eyes with deep concern.  He didn’t try to sympathize with me but simply gave me the freedom to vent frustration.  And he offered me absolutely no advice, just a listening ear without judgment.  And as a person of faith, I also appreciated his promise to pray for our family, and then the follow-up text messages indicating he was, in that moment, doing just that: praying.

That really sucks!

This phrase I learned from Evangeline when she was gigantically pregnant with our last child.  She was complaining about her feet, knees, hips, and how nothing fit her anymore.  Fresh out of ideas, I offered some trite platitude about how I wish I could help, and suggested she buy bigger clothes.  Instead of breaking my nose, she said, “Danny, all I really want to hear from you is, Evangeline, that sucks!”  Sometimes we’re not looking for help, or answers.  Sometimes we simply need a safe outlet to blow off steam.  

Teach me how to interact with Matthew

Our church is small, but filled with dear people who earnestly want to know how to relate to Matthew in a positive and meaningful way.  So instead of simply giving up and shuffling him off into a corner with a tablet, they ask.  Matthew was doing this in class; is that normal?  If he starts to do that, how do I respond?  What can I do to make sure he gets the most out of this class?  Nothing is more encouraging to us than people who love Matthew enough to go the extra mile to make him feel special.  

Why don’t you let me take the kids for the weekend?

Honestly, sometimes our life feels like a prison sentence: hard labor under the Special-Needs Warden.  Sometimes just surviving another day is quite literally all we can accomplish.  The routines, doctors appointments, medications, IEP meetings, report cards, and the day to day drag every last ounce of energy we have.  With our other kids, we have complete confidence that they will, at some point in their lives, be self-sufficient contributing members of society.  We sure hope for a great surprise, but with Matthew, we just don’t see it yet.  Will he still be living at home when he’s 25?  35?  Will we ever see an end to this?  Will there be even one day in his entire life where he doesn’t wake up and cry?  Sometimes the burdens get to be too much and what we really need is serenity now!  

What I haven’t found helpful is, If there is anything I can do, just call me and let me know.  Not only do we have the duty to see our children through another day, but now you’ve just given us an assignment.  Far more helpful than the hypothetical If has been when people voluntarily showed up to help without having to be asked.  We have one dear lady from church who periodically says, “I’ll be over tomorrow to help with laundry.”  But she doesn’t just do laundry, she also cleans the dishes, feeds the kids, mops the floor, washes and waxes the car, does our taxes... the list goes on.

All parents, whether they have special-needs children or not, need to remind themselves what it means to be a couple, romantically involved with one another.  Even if just for a few hours in the middle of the day to sit across from one another at Starbucks, what Evangeline and I really crave is a break.

Finally, there are all the other things people do to support us from afar, even if it doesn’t directly impact our family.  Evangeline has sisters who have sat their own children down and explained Autism to Matthew’s cousins, hoping they will understand him a little better and be able to relate to other special-needs children in their own communities.  My younger sister donates her time and energy to a local fund-raiser (shameless plug for Project iAm), raising money and awareness for Autism in Toledo.  And that’s only a few of those who have done whatever they could even from afar.  Parents, siblings, cousins, aunts and uncles and countless friends have all done things that, even if they haven’t directly benefited us, are nevertheless far more meaningful than suggesting there is no such thing as normal.  

Again, I’m not presuming to speak for the entire community of parents of special-needs kids.  These are simply things Evangeline and I have found helpful, contrasting with those we haven’t.  Maybe some special-needs parents actually like hearing, “Someday you’ll miss this.”  If you miss it so much, you are free to take my kids to your house so I can have an uninterrupted nap.

Items carefully lined up are a very common sight in our home

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.  

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!