Disabled? Differently Abled? A Fun Semantic Game?

At a 2015 conference for Nazarene leaders, I attended a workshop aimed at preparing churches to be better equipped at welcoming families and children with special needs.  Being both a pastor and a parent of a child with Autism and a rare genetic abnormality, the workshop piqued my interest.  Maybe it is the borderline cynic in me, but I left that workshop intensely frustrated.

The three presenters were counseling professionals with the additional perspective of being moms to special needs children.  From the beginning, I was reminded that “Special Needs” is a large umbrella.  Two presenters have sons with ADHD and the third mom defined her son as having “high-functioning Autism.”  I am not among those who would say ADHD isn’t a real thing, or that high-functioning Autism is code for “severe introvert.”  Both are real, both are challenging.  But with all due respect, the presenters did not speak for me.  Their anecdotal experiences are just that—anecdotes.  And I don’t wish to minimize their experiences, but someone should have told them they see “special needs” through a very narrow and rosy lens.

During the workshop, I heard statements like, “They’re not disabled, they’re ‘differently abled’.”  “Our God is too creative to make all normal kids.  And what is ‘Normal’ anyway?”  “God doesn’t make cookie cutters.”  “There is nothing wrong.  They’re not broken.” 

Speak for yourself.

I will be the first to say that a diagnosis of Autism or ADHD does not necessarily imply "disabled."  Again, “special needs” is a large umbrella.  I will also give the benefit of the doubt to these moms, that their hearts are right, and they were doing their best to help families and churches.  However, I can’t help but think that their comments are not only narrow, they also bear unintended theological implications.  

It’s easy to say your kid isn’t broken, just “differently abled,” when he is learning violin and building masterpiece architecture out of Legos, but most kids with an Autism diagnosis are not “savants.”  “Not disabled, just differently-abled,” is not only unrealistic, it stands in direct contradiction to the many parents I have met who describe their children as severely disabled.  For me, when my son was 6 and his then 3-year-old sister was far more advanced with fine motor skills, I simply can’t agree that he is just “differently abled.”  Or when his younger brother was 3 and could use a spoon better than he could at the age of 8, to say “there’s nothing wrong with him” is not the reality. Even now at 12, he still struggles with normal everyday tasks most 7th graders take for granted.  I have to admit that while I wouldn’t trade him for the world, I would sell a vital organ for him to fall within the range of “normal.”  The difference between my son and a neurotypical peer is nine genes.  That’s not normal.  You have no idea how many nights I pray that God would give him those missing genes.

Many kids with mid- to low-functioning Autism—to say nothing of the wide gamut of other “special needs”—are, in many ways, very broken.  Try telling the parents of a non-verbal child—parents who will never hear “I love you”—that God is too creative to make all normal, “cookie-cutter” kids.  Try telling the parents of a child bound to a wheelchair for the rest of her life “She’s not disabled, she’s differently-abled.”  Try telling the parents of an adult child who they are leaving at a group home for the first time, “There is nothing wrong with him, he’s not broken.”  Try telling any of this to an overextended mom whose weeks are consumed with therapies, fights with a school district, or visits to one of the myriad of medical specialists she hopes the health insurance plan will cover.

This thinking leaves us with some very uncomfortable theological implications as well.  In the New Testament, part of Jesus’ ministry included healing the sick, blind, mute, and crippled.  John 9 is my go-to case study to talk about my own son; it is where Jesus meets a man who was born blind.  Perhaps some well-intentioned first-century Jewish mother told this poor child’s mother, “Yahweh is too creative to make all kids seeing; he’s just ‘differently abled.’”  Jesus charitably disagrees.  His response was to heal him of his blindness, restoring his sight.  If God is too creative to make all “normal” kids, what right does Jesus have giving sight to the blind?  Or if a lame man was born lame, does Jesus have the right to give him working legs?  Why would the divine incarnate Son step in and undo what the eternal Father wanted done in the first place?  And why all the promises that in the world to come, God will wipe away every tear and heal every sickness and disease?  Is “Special Needs” not included in the promise? 

Jesus, throughout the gospels, routinely noticed people’s problems, but he did not brush them aside with hollow phrases like, “Well, he’s just differently-abled. The Godhead is too creative to make all kids ….”  No, for Jesus, blindness, deafness, paralysis, leprosy, and you name it—it is a disability, and there is no shame in calling it what it is.  There may be, however, great shame in minimizing them, or pretending something like “low-functioning Autism” isn’t all that bad anyway. 

What’s more, “There’s nothing wrong with them” is a statement even the presenters didn’t believe.  While saying “God is too creative to make all kids ‘normal,’” they also deliberately took time in their presentation to recommend when pastors should seek professional help for kids and families.  If they’re just “differently abled,” what on earth would they need professional help for?  

I should be clear; these moms are not the enemy.  In fact, I genuinely appreciate what they tried to do.  First, neurotypical children, do not have value and dignity because they fall under some vague definition of “normal.”  At the same time, children who are “disabled,” missing nine genes, and in other ways “abnormal” do not lack value and dignity because they have a diagnosis.  Our value, from the greatest to the least, comes from being created in the image of God, regardless of our level of ability, function, or any other benchmark we use.  

Second, if that is all true, children and adults of all ages and abilities are entitled to know God, grow in grace, and serve in the church in whatever capacity they are able.  Unfortunately, most churches are ill-equipped to do that for the special-needs community, and an already lonely existence for parents like us gets colder when we find out there is no place for our children, who do not lack the image of God in spite of their diagnosis.  These moms only want that for their own children to the same degree I want that for mine.  

We will not get to the place of true welcome by minimizing the experience of families touched by a difficult reality, by coloring “special-needs” in brighter hues, or by speaking in hollow platitudes.  Dignity does not arrive by ignoring reality.  Churches and church leaders need to know just how hard life can be for a special-needs family, how lonely it is to live in these trenches, how desperate we are for genuine fellowship.  Then, churches and leaders need to be willing to do the hard—and I mean hard—work of joining families on their own journey, making it a part of their own.  

What's His Gift?

Whenever we meet new acquaintances, the topic of conversation inevitably turns to our children, which also turns to an explanation of Autism, 15q24, and an entire catalog of other adjectives.  

It gets awkward quickly. People are usually polite and interested but in a hyper-sensitive society they’re unsure what questions are appropriate.  So they dance around the questions they really want to ask until I give them permission and promise I won’t get offended.

People on the spectrum are… well… how would you say it?  “Delayed”?

Is he in, like, a special class or something?

Can he understand what we are saying?

Was it because you gave him shots and stuff?

Will he ever live on his own?

Again, it’s uncomfortable but asking is a form of caring so I try to respond graciously.  But if there’s one question that requires a little more patience on my part it is, “What is his ‘Gift’?”

I don’t think we live in an era where people’s minds automatically drift to the Rain Man when they think of Autism.  But like it or not, that movie seems to have conditioned our society.  The thought goes: Autism comes with a lot of social, emotional, and cognitive baggage, but at least it leaves some stamp of brilliance on the individual.  The notion of a Gift is still perpetuated in the media.  

As I write, ABC airs a medical drama, The Good Doctor, about a brilliant surgeon who has high-functioning Autism.  Dr. Murphy is socially aloof, but he has a Gift.  He can envision the human body in a way the average doctor cannot. Colleagues can overlook some of his interpersonal difficulties because he is uniquely qualified to see things they cannot.  Originally the writers of the show went to great lengths to differentiate between “Autism” and “Savant,” but if you watch from week to week you still get the impression that they are one in the same.  

I highly recommend the movie Temple Grandin. It is a raw biopic about the namesake of the movie, painting a vivid reality of what it’s like to have Autism.  But she has a Gift: because she can think in pictures, she has become a brilliant engineer who streamlined the entire cattle industry.  

Then there is Ben Affleck’s “The Accountant” and by now you know the routine.  A guy struggles to function in polite company, but he has a Gift. He’s brilliant with numbers (and ninja skills too).  One critic painted Affleck’s character as “giving Autistic kids their own superhero.”  

Part of the appeal these stories have on society is that they try to soften the blow of an otherwise bleak reality.  “Special Needs” doesn’t seem so bad if we can rebrand it as “Special Ability,” or “Differently Abled.”  So when people ask of our son, “What is his gift?” what they really want to know is, 

Is he, like, an accomplished pianist?  

Can he do calculus in his head?

He’s probably fluent in Mandarin.

Has he memorized “War and Peace”?

I bet he has a photographic memory, or something like that.

The question is innocent. Those who ask are not being unkind, they simply reveal their social conditioning.  At the risk of being naïve, I believe most people ask because they genuinely care, so I have to force myself not to answer, “What is his Gift? Well, on any given day he’s got a 50-50 shot at getting his pants on the right way—does that count?”  

In fairness, there are things my son is good at.  He’s charming and has a great sense of humor.  He has enormous confidence on a bicycle and is incredibly friendly.  He particularly enjoys manual labor.  But a savant he is not.  Society is conditioned to believe that in spite of his difficulties, there is latent brilliance somewhere beneath the disability.  

The most obvious problem with that understanding is it simply isn’t true, not for our son nor for the majority of children and adults who live with a similar disability.  What makes a story like Rain Man, The Good Doctor, Temple Grandin and The Accountant compelling is that they are outliers.  They may give the layperson a sense of relief on our behalf, but for the families who live Autism and special-needs day to day, it simply isn’t the reality.  

But there is a second problem.  Asking about a child’s Gift and expecting some gleam of brilliance shining from the darkness of disability reveals that deep down, we still ascribe value and dignity to a human being solely on what they can contribute to society.  The unspoken philosophy seemingly embedded in our culture suggests that maybe our kids are weird but the discomfort they impose on society is tolerated so long as they have some superhuman ability that makes them worthy citizens of humanity.  Certainly only a handful of people believe that and even fewer would say it out loud, but like it or not, that is the governing, albeit unspoken, philosophy in our culture.  

I am Christian.  In Christian theology, value and dignity are assigned at the beginning, not later when some “Gift” is discovered and honed.  The worth of a human being was pronounced when God said, “Let us make man in our own image,” and he stamped that image on the first human couple.  When there were no other humans around to affirm their worth, and when the first couple had absolutely nothing to contribute that could earn God’s respect, God gave his nod of approval anyway.  Perhaps one could even say God bestowed worth and dignity in spite of human inability to earn them through some “gift.”

So God created man in his own image,

In the image of God he created him,

Male and female, he created them

Genesis 1:27

I don’t believe many people in our son’s life are waiting to endow him with value and dignity until they can recognize some superhuman feat of cognitive ability.  But a question that presumes some “gift” (and the slight disappointment at discovering there isn’t one) reveals a cultural conditioning, even if it lies dormant beneath the surface.

My dad was once asked, after I received my Master’s degree, if he was proud of my achievement.  His answer was, “I’m proud of all my kids.”  That may seem like classic question-dodging, but “I’m proud of all my kids” was his way of saying that none of his four children needed to do anything impressive or display some “Gift” before we could earn his pride.  My dad very well may be impressed, but he wouldn’t bestow honor and dignity to us as a result of our accomplishments.  We are his kids, and in his mind, that’s all that matters.  Any perceived achievement or “Gift” is simply a bonus.

I’m proud of my son. He can’t tie a shoe.  He can’t use a spoon.  He can’t do advanced arithmetic.  On any given day he has a 50-50 chance of getting his pants on the right way.  He reads at a 2^nd grade level and has a temper that would make a drunken Irishman seem like a cub scout.  He doesn’t have a Gift.  But his value, dignity, and worth as a human being is not dependent on one.  He’s my kid, and like his siblings, he is given a nod of approval from the God whose image he bears, and that’s all that matters to me.  

Not The Son I Expected

Every parent has idealized visions of what their unborn children will be like.  In our very first Lamaze class with our first child, the group was asked what we were most excited about, thinking of our children.  Dads who were expecting boys answered predictably enough: 

I can’t wait to take him on the lake and teach him how to fish

It’ll be fun to have him help me change the spark plugs in the car

I'm looking forward to having someone to throw the ball around the yard with.  

Mothers were equally predictable with their expected daughters: shopping together, painting nails together, baking cupcakes together.  And of course dads with daughters weren’t too proud to sit down and drink pretend tea with her Barbies, and mothers would welcome the opportunity to hunt for toads with their little boys.  

In all these, there is a bit of projection.  We long to see ourselves, in some way, in our children.  Only real jerks would commandeer their children’s childhood in order to fashion their offspring in exactly the same mold from which they themselves were cast.  But it isn’t wrong to see a bit of ourselves in our children. Certainly they will never fully live up to our idealized vision of them but even so, at the very least they are likely to fulfill at least some of it.  And that is what makes parenthood so fun.  When I, as a musician, see my kid learn the piano, it’s somewhat fulfilling.  It’s the same feeling I felt when my 2-year old drilled a line-drive off a tee the first time he ever held a bat.  It’s the same feeling a computer geek feels when his kid learns to hack.  Or fish, or change spark plugs, or hunt, or….

I remember the first time I cried.  About a week after my son got his diagnosis, I was doing Christmas shopping at a toy store.  I meandered up and down the aisles looking for toys and games appropriate for pre-schoolers when I came to the sporting-goods section.  There they were, in full array: baseball gloves.  I picked it up, put it on, gave it a squeeze, and then came the tears.  I am a baseball guy; it is what I breathe.  With a diagnosis like Autism, and somewhat low on the spectrum, what were the chances he would ever be able to put that glove on and throw a ball around in the yard?

Every parent has idealized visions of what their unborn children will be like.  I had visions of me and my two boys trying to out-throw one another in a triangle with a baseball.  I had visions of my sons perhaps playing baseball on the same team — they are close enough in age.  This was my childhood.  My dad and brother and I played baseball, watched baseball, talked baseball.  The three of us tried to out-throw one another in the side yard.  We even invented a baseball game that everyone in the neighborhood played: The Mini-Bat-Major-League-Baseball (MBMLB, for short) where we used those 15-inch bats and a small Nerf ball.  Still to this day, one of my dad’s greatest memories is when he got to play on the same infield as me and my brother in a church softball game.  One of my greatest memories too.  He played first, and my brother and I shared the middle infield.  I had visions of possibly sharing with my two sons what my dad shared with me and my brother.

Every one of those idealized visions shattered in the sporting-goods section of a toy store, like a bat shatters after hitting a long out to the warning track.  I could no longer envision us playing sports together, let alone baseball.  

I imagine the ancient Jewish patriarch, Isaac, felt something similar when he considered his son, Jacob.  Isaac was a man’s man with twin boys; a rugged outdoorsman who had a love for the wild.  I imagine him as a kind of frontier-man who would build a log cabin with his bare hands, whose love for venison was trumped only by the thrill of the chase.  I also imagine he and his wife sharing a Lamaze class together and being asked what he was most excited about, thinking of his yet unborn twin boys.  I can’t wait to take them out into the woods and teach them how to shoot an arrow!

Fortunately for Isaac, he had one son who fulfilled his idealized vision: Esau.  Esau was a man’s man, cut from the same block of wood as his dad.  Twin brother Jacob, however, was not.  He would rather putter around the house with his mom, learning to cook.  While dad and Esau were out shooting game, Jacob was at home perfecting his stew recipe.  I imagine that at some point, Isaac had his toy-store moment of weeping, perhaps holding a bow in his hand knowing his son Jacob would never care to brandish it.  Something tells me Isaac never came to accept who Jacob actually was, always longing for who Isaac wanted him to be.

Isaac always seemed to resent Jacob for not being the “wild-at-heart” outdoorsman that Esau was, and Jacob seemed to resent his dad for trying to impose a lifestyle on him that he didn’t want.  It was a tension and resentment that was never resolved.  

I don’t want to be Isaac in this story, resenting my son for who he can never be.  And I don’t want Matthew being Jacob in this story, resenting his dad for not appreciating who he actually is.

Here is what I learned, I think.  Weeping in a toy store at the sight of a baseball glove is okay.  But I do not have to stay in that aisle and continue to weep.  He’ll never play baseball, and while part of that bothers me, it doesn’t own me.

I have idealized visions of who my son would be.  It hasn’t worked out the way I thought it would.  I have two very different sons (and a third who is completely different from his brothers!).  My oldest son is almost a carbon copy of me: He loves baseball.  He also loves music.  He hates country music because it isn’t music.  He loves playing practical jokes, drawing, and MarioKart.  But that’s not who Matthew is.  Matthew would rather sit in a lonely corner and spin the wheels of a toy car, or water the flowers in the garden.  He would rather go for walks and bike rides.  He would rather do quite literally anything than arts or crafts.

What I have learned is that, like Isaac and his twin boys, I want to relate well to all of my kids.  Certainly that is easy to do when the child likes all the same things I like.  But with Matthew, for whom this is not the case, I can either resent him for not being like me, or I can try hard to relate to him on his own terms; to relate to him according to the things he likes; to sacrifice my idealized vision of who I’d like him to be, and let him be himself.  

I have learned to roll cars back and forth on the couch ad nauseam because that is what he likes to do.  I have had to be comfortable with giving him free reign of the hose to feed the flowers.  I have often given up my right to watch the Tigers on TV because he would rather watch Dora the Explorer.  When he was first born, I wasn’t yet a runner, and couldn’t envision letting him be my pace guy on his bike while I struggled to keep up for six miles, yet today, that very thing is one of our favorite activities together.   

Matthew is not the son I expected.  I envisioned another son carved in my image.  That was not to be the case.  But he has taught me a few things.  I can relate with him and love him for who he is instead of grieving him for who he isn’t.  Certainly he is not the son I expected, but he is the son I needed.  

Autism and Aging

Plenty of people in our lives remind us how quickly life passes by and I assure you, I’m not in any hurry for my children to grow up.  “Enjoy them while they’re young,” many say.  “You blink and they’re all grown up!”  Far too often we hear the refrain from—no doubt well-intended—empty-nesters saying, “You’ll miss this.”  I don’t disagree.  I’m just in the throes of the latest temper-tantrum over who gets to play with the red car, the six-gazillionth cup of milk spilled within a hairs-breadth of my smart-phone, and the veritable boxing-match that is bedtime.  “You’ll miss this,” is not entirely helpful and is, in fact, rather irritating.

Yet even in the most difficult of days, I’m not eager for my kids to get older.  The world can be an ugly place and childlike innocence is the first casualty of growing up.  I love the childlike wonder at the world, discovery and awe at things adults take for granted, and the subtle pleasure of enjoying a vanilla ice-cream cone.  Those are the things I’ll surely miss, and I don’t need the reminders.

Kids simply grow up too quickly.  We have dear friends who sent their daughter to Kindergarten just this year.  Yet in that very kindergarten class, their daughter needs to suppress her love of Elsa and Anna because “Frozen isn’t cool” amongst cliques of 5-year-old girls.  That’s the dumbest thing I’ve ever heard, but you can’t argue with a 5-year old.

Peer pressure at a young age kills things like Disney movies, playing with toys, coloring, singing silly songs, and laughing at stupid jokes.  Maybe that’s natural.  I remember the pressure to stifle my own love for G.I.Joe action figures and Looney Tunes.  Natural, maybe, but it doesn’t make it any easier as the parent.  I’m not in a hurry for my children to grow up.

But for us, this fear of kids growing up goes deeper than the predictable transition of children through adolescence into adulthood.  It’s that we have a child with Autism who will very soon be a teenager with Autism, and not long after that, an adult with Autism.

Something happens, and I’m not sure when, why or how, but society’s perception of the special-needs person changes as they age.  Children with Autism are quirky and adorable.  Adults with Autism are sad and unpleasant.  Children with special needs warm our hearts and garner our compassion.  Adults with special needs make us wish they would go away.

As a society, we do a decent job of tolerating special-needs children.  Sure, there are horror stories of judgmental types who criticize and mock as if they’ve worn my shoes.  In my experience, however, those are few and far between.  Special-Needs children are treated, by and large, with a little more patience and compassion.  Special-Needs adults, it turns out, are seen as sad and kind of pathetic.

My son is only 8, which means he is still a little charming even if he is a little quirky.  Developmentally, he’s a toddler.  At the age of 15, developmentally he will still be a toddler.  Someday he’ll be a toddler trapped in a 40-year-old body, and society will certainly not view him then as society views him now.  That’s the thought that keeps me up at night.

Somewhere between childhood and adulthood emerges a stark change in society’s perception where there is simply less acceptance.  I actually witnessed this firsthand a few months ago.  It involved a painful exchange of question and answer between two adult women—one neuro-typical adult and the other bearing all the hallmarks and diagnosis of mid- high-functioning Autism.

In a group of people, the woman with Autism asked a question that was not inappropriate and not out of line, although it was out of left field.  Her neuro-typical peer, someone who has in the past showed my son a high level of compassion and tenderness, made enough subtle and not-so-subtle cues which shouted at this Autistic young woman, “Hey Weirdo!  Back Off!  Can’t you see I’m talking with regular people?”  Terse and discourteous responses were given to the questions which were tame but, admittedly, out of context within the conversation.  Tenderness and compassion were replaced with sarcasm and disregard.  There was an audible change in the tone of voice, from jovial to indignation.  Verbal and non-verbal cues all translated as, “You’re strange and I don’t really want you talking to me!”

This is only one case-study in the treatment of special-needs adults, but anecdotally, these types of encounters between neuro-typical adults and their Autistic counterparts are the rule, not the exception.  I wish someone would do an actual study to prove me wrong — I’d gladly eat my words.  I only fear such a study would confirm my suspicions.

When I see an exchange like that, I don’t just see two women having an uncomfortable conversation.  I see my son in a dozen years.  I see him doing something similar — working hard to fit in, trying to be included in a conversation even if he has difficulty doing it.  I see him wearing her shoes and fear him being treated with the same sarcasm, disregard, and downright scorn.  I fear him being indirectly told, “Get lost, weirdo!”

What is it that happens between childhood and adulthood that moves a special-needs human being from innocent and vulnerable to pathetic and weird?  Or, probably the better question: what is it about growing up that makes the rest of us less accepting and more insensitive?  Why is it that we — who should know better, who should be leading our children by example — grow increasingly weirded out and intolerant of special-needs peers?  Maybe in the experience I shared, the person who subconsciously (I hope) acted in incredibly insensitive ways, genuinely did not know the other party in the conversation was an Autistic woman; perhaps she would have acted differently if she had.  Should that even matter?

This is what keeps me up at night when I think upon my aging children.  I would hate for a clique of girls to steal my daughter’s love of Olaf, Sven, and the rest of the Arendelle gang.  That would be a sad day.  It will also be a sad day when my two other sons are “too old” for toys and cartoons.  Getting old stinks, but I have every reason to believe those three kids will grow up to be well-adjusted adults where the default from their peers is acceptance.  But the older Matthew gets, the less cute and endearing he becomes.  What happens when the community no longer sees an adorable and charming smile, but a weird, impersonal social misfit?  A toddler trapped in an 8-year old is still somewhat harmless and lovable.   How will the neighborhood react when he’s a toddler trapped in a 40-year old’s body?

The older I get, the more I believe this is what the concept of “awareness” is all about.  I used to think the sum total of “awareness” could be boiled down to simply being aware that a thing exists.  That is a necessary and obvious first step.  But true “awareness” means recognizing the way things are and then adjusting your life accordingly.  Awareness is a deliberate pursuit to recognize the special-needs people among us and a purposeful effort to respond in appropriate and respectable ways.  Awareness is coming to the conclusion that adults with Autism are no less entitled to the same dignity, value, and respect as anyone else.  And awareness means taking intentional, sometimes difficult, steps to show dignity, value, and respect in how we treat the grown-up version of the “least of these.”  Awareness means fielding a question from an Autistic woman from out of left field, and cutting her some slack; it means responding with kindness, not with sarcasm.  It means maintaining the same level of compassion for a 40-year-old toddler as you do for an actual toddler.

You have been made aware.  In your awareness, help make society a safer place for the 40-year old with special-needs.  Someone’s dad is worried about what might take place when his adult with special needs meets you.  His child isn’t weird, sad, or pathetic.  His child is created in the image of God.  When you meet his child, treat that person the same way you would treat anyone else — with dignity, respect, compassion, and patience.  Someday, that child is going to be mine.

The Dignity of a Special-Needs Kid

Evangeline and I have a lot of friends who grasp at straws trying to help or encourage us on our journey with Autism.  Many of them cannot personally identify with us as a fellow-parent affected by Autism, so they try to relate to us vicariously another way.  The easiest thing to do is forward an email, share a Facebook post, or hand us a newspaper clipping of the latest trending story about some person who overcame Autism and accomplished something great.  

There’s the kid who was the basketball team manager and finally got to play in a game and started draining three-pointers like he’s Steph Curry.  There’s a non-verbal girl who can play Beethoven better than Beethoven could play Beethoven.  The grown adult who overcame Autism and is now doing research, having earned several masters and doctoral degrees.

The musical prodigy.  The advanced calculus PhD.  The child who simply overcame and is now living as a productive member of society.  They give us a sense that deep down, behind the behavioral and cognitive problems, there lies some hidden genius.  These are all heart-warming stories that people share with us, as if to say, “See, this could be your child too!  He’ll grow up to do something great!”  

These people mean well, and I truly appreciate their honest desire to help, but as the recipient of these stories I actually find them to be less helpful, not more.  

First, I can’t help but feel like this is setting me up for a false hope.  

The spectacular nature of these stories just proves how rare they actually are.  If overcoming Autism and doing something remarkable was commonplace, those stories would never go viral.

I’ve met way too many parents like myself whose greatest hope for their child is that he might bag groceries at the local supermarket for the rest of his life, and that is setting the bar rather high.  More of us, however, are beginning to work on our contingency plan in the likely event our special-needs kids outlive us.  Who will take care of him when we are too old and frail (assuming we live that long)?  What will become of him when we die?  Will he live with a sibling?  Should we impose that expectation on the sibling?  Will he live in an institution?  And if so, what nurse on the clock of an institution could possibly love him with the same unconditional love, and care for him with the same sacrificial care that we do?  

Overcoming Autism and living as a productive member of adult society with varying degrees of genius and cognitive ability is a noble goal worthy of aspiration, but for many of us, it just isn’t realistic.  

But the Second reason why these stories aren’t very helpful is because I can’t help but wonder if we, as a society (even as a church), haven’t inadvertently made the value of a human being dependent on ability.  Obviously no one would ever say that, nor would most even believe that, but many operate as if it were true.

This was reinforced at a conference I attended a few years ago.  Three moms of special-needs kids were leading a seminar on developing a special-needs ministry at your church.  I understand their goal — These moms wanted to empower leaders and give strategies for starting and sustaining a legitimate special-needs ministry so that no family would need to be told, “We have nothing for your child here.”

However, throughout their seminar, they kept trying to encourage us by saying things like, “These kids aren’t disabled, they are ‘differently-abled.’”  “They don’t have ‘special-needs,’ they have ‘special-gifts’ and ‘special-abilities.’”  Besides simply being a game of semantics, this actually contradicts the statement of another dad I met who said of his own son’s Autism, “He is severely disabled.”  

Their intent was to move children with Autism and other special-needs away from the margins of society and place them in the mainstream.  However, the means of moving them was a propped-up false notion of some deep hidden special ability that has yet to be mined.  They would never actually say this, but indirectly they reinforced a belief that a person’s value and dignity are dependent on their “special” or “different” ability.  

And they would never say this, but those who try to encourage our hearts with trending stories about the special-needs kid who mastered “Pathetique” also indirectly make value dependent on ability.  This attitude is many things, but it is not Christian.

Right at the beginning of the Bible, honor is given to all human beings for no other reason than “God created man in his own image, in the image of God he created him; male and female he created them” (Genesis 1:27).  In fact, the entire first chapter of the Bible is a story about the dignity of mankind for no other reason than because they are God’s.  They are not given dignity to the degree of their ability.  They are loved, unconditionally, irrespective of what they can or cannot do, simply because they are his.  

I felt the same thing the first moment my child emerged from the womb.  I loved him unconditionally; not because he had anything to offer me, not because he came with “special abilities,” and not because someday he might achieve greatness.  No, I loved him in that moment because he was my son, created in the image of God, and I was his dad.  Nothing else mattered then.  Nothing else matters now.

My son will most likely never earn a PhD.  He will never play a masterpiece concerto.  He will never make it rain threes in a varsity basketball game.  He will never reach the pinnacle of human ingenuity or set the standard for human achievement.  He may, in fact, live at home for the duration of his life.  And if the best he ever amounts to is bagging groceries at the supermarket, I could not be prouder of him.  Not because he is the best grocery bagger in the store: most likely he will suck at that too.  No, I could not be prouder of him simply for the fact that he is my son, and quite frankly, I don’t need another reason.  

We must stop defining people based on some perceived ability, or lack thereof. Instead, we must recognize their inherent dignity assigned to them by their Creator, irrespective of any ability or disability.  My son has value — no more, and no less than any other human being with any level of ability.  I wish you could see him the same way I do.  And I hope I can always see you the way God does.

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!

A Reflection on Having a Brother, from Dad

I have a brother, two years younger than me.  Growing up, we were close enough in age that we played well together.  And as with most brotherly relationships, it would all begin by me shooting him in the face with a Nerf gun or him hitting me in the face with a playground ball.  Either way, one would provoke the other and the game was afoot.  

Together, we did everything that boys typically do together.  We fought with each other.  We fought other boys in the neighborhood together.  We played sports together.  If there wasn’t a sport to be played at a given moment, we made up our own games -- still do.  Once on a rainy day, we commandeered the living room and played an entire tennis championship, volleying a paper wad back and forth with our hands on our knees: the walls were out and a strip of tape on the carpet was the net.

We had our friends, but when friends were unavailable, we had each other.  From the moment he could walk until the day I moved out of the house, that was our relationship.  Still to this day, one of us can expect to get hit by the other in the back of the head with a snowball in my mom’s kitchen on Christmas.  

Evangeline’s brothers are similar to that: close enough in age that they were simultaneously each other’s best friend and mortal enemy.  In fact, most brothers who are close in age like that might say something similar, though the nature of play between sets of brothers may vary.

So when we gave birth to our second son, we had stereotyped visions of what our sons’ relationship would look like.  Our boys would ride bikes together.  They would play catch together in the yard.  They would chase girls with worms together.  On a rainy day, they would play games, or make up their own games together.  They would hate each other at breakfast and join forces to torment their sister before lunch.  They would have that typical brotherly relationship that I had with my brother.

And so, grief confronted me at a rather surprising moment this morning as I compared my experience as an older brother with Nathan's.  Nathan and Matthew are as far apart as I am to my brother, yet their sibling relationship is significantly different from ours.  All Nathan wanted to do this morning was have a sword fight with Matthew in the living room.  If my brother and I had light sabers when we were kids (we weren’t the biggest Star Wars fans), I could have taken the red one, chopped my brothers’ arm off, and expected him to pick up the blue one and fight back.  We might have broken a lamp or a window or a bone in the process, but the risk would have been worth it.  

All Nathan wanted to do was play with his brother.  All he ever wants to do is play with his brother.  So he took a light saber, chopped Matthew’s arm off, and tried every trick in the book to get Matthew to chop his arm off too.  “Chop me, Matt!”  “C’mon, hit me right here Matt!”  “Matt, I’m Darth Vador and you’re Luke Skywalker!”  “Let’s have a sword fight!”  

Matt just doesn’t get it.  

He stands there not knowing what to do.  He holds a light saber up, like Nathan tells him to do.  He stands there while Nathan attacks him (Nathan is a great big brother; his “attacks” are pretty tame).  And there is just no response.  No fighting back.  No chopped arms.  No laughing together.  No joining forces against their younger sister.  Eventually, Matt drops the light saber and finds a car to drive on the couch like he always does.

This is typical.  “Let’s play soccer,” Nathan says.  So he kicks a ball toward Matt, and Matt just lets it roll on by.  “Let’s play basketball,” Nathan says.  But Matt doesn’t dribble or shoot or play defense; not because he can’t but because he just doesn’t get it.  “Let’s shoot each other,” Nathan says.  So he takes a gun, puts another gun in Matt’s hand, shoots Matt, and Matt simply drops the gun to go drive a car on the couch like he always does.  

Nathan often tries play with Matt on Matt’s terms.  Some days, there is little success, but even on a good day, their relationship is far from reciprocal.  As desperately as Nathan tries to play with Matt, it just doesn't happen.  Honestly, I would give a kidney if it meant I could replace a window they broke during a sword fight in the living room.  

I suppose the silver lining is that while I know what Nathan is missing, he doesn’t.  I have to believe that when he is an adult, he will be more well-rounded because Matt is his brother.  But in the meantime, it is hard to hear Nathan say, “Matt, try to chop me!” and see Matt just drop the light saber and walk away.  

Certainly not all brothers have the kind of relationship that I had with my brother, that my dad had with my uncle, that my brothers-in-law had with one another.  Some brothers were too far apart in age to have any kind of meaningful relationship.  Other guys grew up with no brothers at all.  And you might be tempted to say, “Yeah, well Nathan will have a different kind of relationship with his brother and will be better for it.”  That’s certainly true.  And maybe it isn't fair for me to impose on my boys the kind of brotherhood I had with my brother.  But what I saw today made me grieve.  All Nathan wanted this morning was a sword fight with his brother; something Autism has taken away from him.