Simple Words (Guest Blog)

The other night as I was laying in bed my R2D2 message indicator went off telling me I had an email... yes I am that big of a nerd. When I checked the email I found a message from a fellow autism dad, board member and friend who was clearly hurt and angry. His son was upset, his wife was upset and being the caliber of man that Dan is... he was upset as well.

He needed to vent. So as I had done long ago he turned to writing. He let it all out and worked through anger. Then he did the most important part... he shared it.
As men this is not something that most of us are programmed to do. That is why a male advocate is such a rare breed. I have to admit though that I have seen our numbers grow over the last year, and that fills me with a lot of promise. The male perspective is needed. The male perspective is important. Not just so that we hear both sides of the gender aisle, but because it is part of a needed evolution. It helps to slay stereotypes that we are knuckle-dragging providers that check out emotionally. That isn't to say that we don't enjoy a monosyllabic grunt or two over a brew and a Bears/Packers game... but that isn't ALL of who we are.

The story Dan tells is an important one. With studies out that nearly TWO-THIRDS of kids with autism have been bullied, it is every autism parents nightmare that their child may be part of that statistic. The results of that bullying can be devastating; not only for the child but for the family dynamic. Especially when you see that one stupid act of bullying can destroy years of hard work.

Thanks for sharing this story Dan.

We have always been told that words can hurt.  We’ve been told that if you don’t have anything nice to say, don’t say anything at all.  When you have a child on the Autism Spectrum, words are often hard to come by.  Complete thoughts and spontaneous phrases are cherished.  So many parents would love to hear the words “I love you” from their child, or any loved one on the spectrum.  Many of us are blessed to have a child that can express this kind of emotion, but more often than not, spontaneous words and phrases are simply out of the question.  When it comes to autism and words, you’ll take whatever you get.

What happens when those very words and phrases are used against the person with Autism?  What happens if the child who overcame so many obstacles just to reach a level of communication that appears almost “normal” (Neurotypical if we want to pull out the big words) is suddenly shuttered by others who wish to demean, demoralize, and embarrass them?

After several instances at school, on the bus, and on the playground, the teasing and taunting of our 11 year old son with Autism got very personal.

Henry was diagnosed at age 3 with Autism, PDD to be exact.  If you’re reading this, you probably know the terminology.  He was typical in his regression, as we watched this amazing child slip away right before our eyes, losing his words, personality, and emotions to a misunderstood disorder that affects a staggering amount of individuals.  As we came into a better understanding of the disorder, the following phrase was always near; “If you don’t know someone with Autism…you will.”

Like so many others, Henry lost his words, and any sense of remorse, concern, or pain for that matter.  Not only did he lose the ability to communicate with us verbally, but our home became his strike zone, as anything that wasn’t nailed down was subject to his frustration and tantrums.  If it was glass, it was broken, a lesson we learned quickly when, after Henry broke through a window in an set of French doors, leaving bloody footprints throughout the house.  His older brother Jack became the easiest target, as he wasn’t able to escape Henry’s rage as quickly as we were.  He was unable to predict the wind-up of his brother.  Regardless of what had triggered Henry’s anger, Jack was the outlet for his frustration.  We were all punching bags, but Jack was always closest.  Through it all, he has always been Henry’s best friend.

After years and years of therapies, special programs for those on the spectrum, and medical intervention, Henry found his voice.  Not only did he begin to speak after 3 years of silence, but he could do so in proper context, words and phrases.  He remembered places we had visited in those years, and could now provide his own commentary for the world around him.  With this communication came progress in his school programs, as he was able to pick up on the years that he had lost.  In a comic twist, we quickly found out that Henry had heard ALL words, including the bad ones.  He had no trouble shouting out an expletive at school when necessary.  He quickly learned that these bad words weren’t acceptable and he hasn’t uttered them in years.  He did learn the good ones, and the important ones.  We were finally able to tell our son that we loved him and get an “I love you too”, in return.  This represented amazing progress as we were told that he may never speak again.  Those phrases, especially the good ones, hold a whole new meaning when there is an understanding of how much was overcome to get to this point.

We had hoped that someday, Henry might even be able to be in a mainstream school program, becoming classmates with all the “typical” kids.  After many challenging and emotional years, Henry was mainstreamed.  We were in Boston when he was placed in a typical classroom setting.  While he still had some assistance with his academics, and a quiet place in which to retreat, should the day overwhelm him, he had really made it.  He rode the bus with all the kids, and became a part of the class in a way that we had never imagined.  Our only regret in leaving Boston was leaving that amazing school system behind…the one that had worked so hard to make our son feel normal…not special.

When we moved back into the Chicago area, we chose to move to Naperville, as we had heard amazing things about their ability to accommodate and integrate kids on the spectrum.  It was a good call, as this school system has provided the services that Henry needed to succeed largely in the typical classroom.  They honored the IEP created in Boston, and never strayed from the notion that Henry could make it in a mainstream classroom setting.  This worked well for 4^th grade and 5^th.  Henry made friends, and has gained a level of self-sufficiency, independence, and pride that we could have never imagined.  Not too long ago, this child could not communicate.  Today, he reads above grade level and maintains very respectable marks, usually all A’s and B’s, with only a few accommodations for his disorder.  He still has challenges, and some tantrums, and he’ll never, ever be in any kind of singing program.  And while he has to go through the fire drills wearing noise cancelling headphones, he has otherwise become a part of his school, liked and understood by teachers and students.  He talks and talks, and every night and every day, he says, “I love you too”.

A few short weeks ago, Henry entered middle school.  For those of you parents with kids both on and off the spectrum, you understand that this is a challenging time.  These kids are fighting to discover who they are, battling with their changing emotions and bodies every day, trying to overcome the awkwardness of the age.  For a child on the spectrum, these emotions and feelings are often exaggerated.  If the changes are tough for a neurotypical child, imagine how challenging it is for someone with autism.

Henry’s challenges began with kids on the bus, taunting and teasing him with bad words, and negative notes thrown at him and his best friend.

Simple words that we hear all the time.  The kids called Henry “Gay”.  They said that he and his best friend were “Gay”.  This is especially challenging for Henry as the term “Gay” is not a derogatory term in our home, rather it is a matter of fact.  Henry’s caregiver since his diagnosis is a friend of our family who happens to be gay.  Henry has no understanding of why this would be considered a bad word, and was very confused when kids made fun of him using these words.  They also called him a “bitch” and a few other words that hurt Henry considerably and confused him further.  As Henry cannot speak negatively about another person, he was both upset and perplexed when the kids swore at him.  He did not understand why anyone would be mean like this.  He was so upset that he went to bed crying, and could not get to sleep, as his feelings were truly hurt.  His mother consoled him until he fell asleep.  Before he turned out for the night, Kerry told Henry that she loved him.  His response; “I love you too.”

To their credit, the school administrators intervened and spoke with some of the children in these instances.  However, the hurt still existed in Henry’s heart and mind, as he did not wish to ride the bus any longer.  He understood that he had no option but to ride the bus, with our work schedules, and we hoped that all would be well.

Last weekend in the park, there were a handful of older kids teasing and taunting all the younger kids by calling them bad words, and corralling them with their bikes.  Henry called immediately for our help, and we broke up the situation by our presence.  The kids saw us, and they immediately rode away.  After a rather disconcerting conversation from a parent of one of the park bullies, who essentially defended her son for picking on the kids, we worked through this.  Henry was glad that we called the parent, and no longer “feared for his life” that the bullies were out to get him.  He still brings this struggle to the classroom and in his homework studies, as it seems to haunt him daily.  However, he continues to get through it.  At the end of each day, he ends the day with “I love you too”.

Today, those precious words began to disappear.  Only this time they weren’t stolen by a devastating disorder.  This time they are being stolen by classmates, who have turned Henry’s disorder against him in a cruel manner.

Today, the kids who have already been reprimanded for their previous bullying of Henry and his friends, decided to recruit other kids to continue the taunt.

When Kerry came home from work today, Henry was out of sorts.  This is not atypical when it comes to days with math homework as this is often the most frustrating of subjects.  However, when the frustration seemed to go beyond the typical homework challenges, Kerry decided to pry.  She asked Henry if everything was OK, and he said that it was.  This answer didn’t really seem genuine as Henry isn’t a good liar.  Clearly, there was more to this.  He started rambling about “all the mistakes I had made in my life”.  He said that he was embarrassed and he began to cry.  He then tried to switch gears by saying that he didn’t mean it, and that nothing had happened.  He said that he was just kidding.   He became frustrated, agitated, and went to his place of refuge…the trampoline.

When he returned to the house, he opened up about what had happened.  He said that one of the kids had pranked him by walking up to him and saying, “I love you”.  Of course, Henry’s response is automatic in his mind.  He responded immediately by saying “I love you too”.

He immediately knew that it was the wrong answer, and the kids began to laugh at him.  He told Kerry that he was humiliated and embarrassed.  He was extremely upset.  These innocent and affectionate words that he had learned so long ago were now fodder for the bullies.

Kerry remembers years earlier, telling Henry that the appropriate response to “I love you” is to always say “I love you too”.  He knows what it means beyond simple repetition.  Now, the kids on the bus have turned Henry’s words into a joke.  They have confused him into questioning his response.  They have hurt him by their antics.

This leaves us asking the question.  Did the words we tried for so many years to get out of his head, disappear again?  Have they gone forever?  Is he embarrassed to reply even to us? 

This is a typical situation that happens every day by kids who haven’t learned the age old lessons of being nice to one another, or the more recent lessons about the devastating effects of bullying.  Perhaps we are overreacting.  After all, we have worked diligently to help Henry to function in a “typical” world.  Mean people are typical.  They exist everywhere…often in ourselves.   Still, it is difficult to see anyone take advantage of a child with any kind of special needs, even worse when it is your son.  When you have witnessed how far one individual has come and how challenging it is for that individual to function each and every day simply to fit into school and society, these taunts aren’t just devastating, they are true setbacks.  Henry doesn’t deserve any more setbacks, especially when they come in the form of misguided, ill-informed teenagers. 

We are confident that the school will take this seriously.  They always do, and we are extremely grateful for their diligence.  However, what happens tomorrow, or next week, or next year?  We can’t always protect him nor can we expect the school to punish every kid who ever said a mean word or phrase.   We can’t expect his older brother, who now wants to quit his after-school activities to protect Henry, to be his keeper.  That’s also not fair.  

We will do our best to stay on top of this, for Henry’s sake.  That’s all any parent can do. 

When Kerry tucked Henry into bed tonight, she told him what she always does…what we always do, “I love you”.  His response, “You’re welcome”.

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