Friday, December 23, 2016

Yes, Mikey, There is a Santa Claus

Originally written on Wednesday, December 21, 2005

I've always loved the famous "Yes, Virginia, There is a Santa Claus" letter because it does give me hope every year when I feel a lack of the Christmas Spirit. With Mikey's first Christmas approaching I began thinking about this letter again and I wanted to write my own version for him. So...

Yes, Mikey, There is a Santa Claus

My Dearest Mikey,

Your daddy has often wondered, long before he became a daddy, what he would tell you about Santa Claus. You see, as your daddy grew up, he had forgotten what Santa Claus was really about and how much he loves children.

As you experience your first Christmas I want to tell you, yes, Mikey, there is a Santa Claus and he loves you, too.

As you get older you'll see Santa Claus in different ways (much as daddy has). But I want you to always remember the spirit of Santa because that is what is so easy to forget when you become a grownup like daddy.

Now Mikey, everyone knows that Santa brings children gifts but that's not what makes Santa so great. The secret of Santa is Love and as I will always try to teach you, Love is the greatest thing in the world.

You'll learn that you can express Love in many different ways and that people will Love you in different ways, too. Mommy and daddy's Love for you is unending, unlimited, and grows stronger every day. Nana and many other people Love you too and as you grow up you'll experience even more people who will Love you and who you'll Love, too.

But the spirit of Santa's Love is different. He Loves all the children. And his Love inspires many people to treat other children and grownups with Love, compassion, and respect. Santa inspires a feeling of generosity, selflessness, and goodwill.

Daddy had put his thoughts of Santa far back in his mind, because as a grownup he thought he didn't need to think about Santa much. But, Mikey, never forget about what Santa means. And never let your children and their children forget. Because the world needs the spirit of Santa's Love. The goodness of Santa makes the world a better place and that's something important all-year round and not just at Christmas.

And so, my sweet child, as you celebrate your first Christmas, I wish you Joy, Peace, and Love, and I wish that you never forget the spirit of Santa because...yes, Mikey, there is a Santa Claus.

Sunday, November 6, 2016

(Un)Real Talk: The Tease of Echolalia

The common songbird, such as the starling, mockingbird, or jay, can mimic human words to such a degree that they’ve frequently been mistaken for an actual person. Some studies say that this mimicry is simply a mistaken effort to imitate species-specific calls. No matter how convincing it may sound, it’s not real talk.

For those of our autistic children who experience echolalia, they too are attempting mimicry for imitation purposes. Echolalia is often found in most developing children, but it is very common in those on the autism spectrum. Echolalia is defined as, “The often pathological repetition of what is said by other people as if echoing them” (Merriam-Webster).

That is a workable definition, but doesn’t mention the frustration and difficulties experienced by the person exhibiting echolalia, or by those attempting to communicate with them. It also doesn’t mention that some children “grow out of” echolalia and develop regular speech, having used echolalia as a learning device.

For my son Mikey, at age eleven, echolalia still dominates his speech. His rare original, inspired words are predominantly requests for juice, snacks, etc. Nine times out of ten, Mikey’s voice is heard reciting dialog from cartoons or children’s videos from YouTube. His talk is memorized words, sounds, and sentences. It is like a tease.

On top of that, his echolalia is constant. He is rarely quiet, which can lead to some embarrassing moments when a loud, “This calls for a Mousketool” is bellowed in Mickey or Goofy’s voice across a library or doctor’s office. There have also been times when his choice of words has made us cringe: Such as when his grandmother said, “I love you” and Mikey responded with, “It doesn’t matter.” Ouch! I touched on the potential dangers of his word choices in my last blog (He’s Just a Boy Who Can’t Say No - http://www.mysongbirdsingsthetruth.com/2016/07/hes-just-boy-who-cant-say-no.html).

But don’t get me wrong, I love Mikey’s voice. I know we are fortunate that he can speak at all and that has always made me long for the chance to have a conversation with him. A few years back, I even wrote an imaginary Christmas morning dialog with him (“Merry Christmas, Daddy!” An Imagined Conversation with My Son - http://www.mysongbirdsingsthetruth.com/2013/07/merry-christmas-daddy-imagined.html). Alas, that amazing gift has yet to be unwrapped.

The one beautiful thing about Mikey’s echolalia, is that it has always included singing. That’s what inspired me to call him my songbird and what led to the original blog post that my personal blog is named for (My Songbird Sings The Truth - http://www.mysongbirdsingsthetruth.com/2013/06/my-songbird-sings-truth.html). His singing voice is delicate, touching, and powerful. It’s as if he’s trying to break through all the limits that echolalia and autism put on him through whatever song has filled his head that day. I’ve noticed more singing lately…I hope that is an encouraging sign.

There have been other signs of encouragement, recently. Mikey, whether consciously or not, has been using echolalia in an appropriate way, from time to time. When we tell him to say hello to people he has chosen, “Hello, guys” from his cartoon repertoire. Our little songbird is mimicking more of the right sounds. If this all leads to regular, original words, well, I won’t even mind if they are spoken in Spongebob’s tone of voice (hmmm, okay, maybe not Spongebob).

ABOUT THE AUTHOR
Dan Olawski blogs about his son Mikey and life as an Autism Dad. He lives with his family on Long Island, where he works as a writer/editor/social media marketer. When he's not having tickle fights or playing skee ball with Mikey at Chuck E. Cheese's, he works to spread autism awareness through charity work and his writing. Dan can be contacted at dantheeditorman@gmail.com. He also has a blog, My Songbird Sings the Truth.

Sunday, October 23, 2016

It's Okay... - Re-Post

Streamers fell from the ceiling and a brass marching band played “Happy Days are Here Again” as the school bus pulled up for the first day of school a couple weeks ago. Well, no, not really, but to say I was happy about the beginning of the school year is quite the understatement.

Mikey didn’t have the best summer break. He regressed a lot and his behavior was challenging at times. I always look forward to the beginning of the new school year, but this year I really couldn’t wait for it to come. Do I feel guilty about saying that? Sure. But it’s okay…
Mikey needed to be back in that structured environment and that’s how I justified my feelings. I did have some pangs of guilt about rooting for school to start back up and for thinking that being around the teachers and other students would be better for Mikey than anything I could do for him at this time. As for having those thoughts, well, it’s okay…
There is a great opportunity for guilt when you are an autism parent. And that stems from the first diagnosis: “Is it my fault?”
Through daily life: “Am I doing enough?” “Did I do the right thing?”
Then there’s that other internal guilt that just wrenches your heart. It’s a guilt that makes you feel like the worst person in the world. But I’m here to tell you, it’s okay…
It’s okay to be happy about back-to-school season…
It’s okay to be happy when your child goes to bed
It’s okay to have those bad days when everything about being the parent of a child with autism gets you down…
It’s okay to want to scream…
It’s okay to cry…
It’s okay…
We all have those feelings at some point. They come upon us sometimes at the worst moments and overwhelm every fiber of our soul. But yes, it is okay to give in to them…with a few stipulations:
  • You must be a truly loving parent who gives your child all the love and attention you have to give.
  • You must have the ability to know when your child will gain from you stepping back to let a teacher, therapist, or coach take over for a bit.
  • And, most importantly, you must be able to realize when an occasional urge to cry or scream has become a problem that consumes you on a daily basis and requires the help of a professional.
So, as I sit here listening over the monitor to Mikey still goofing around three hours after I put him to bed, I can’t help but think to myself, “Go to sleep, buddy. Go to sleep!” And you know what? He will. And I will. And in the morning…it will be okay.
Dan Olawski blogs about fatherhood and his son Mikey. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees and continuing his pursuit of the perfect chocolate chip cookie. He can be contacted at dantheeditorman@gmail.com.

Tuesday, July 26, 2016

He’s Just a Boy Who Can’t Say No

In the classic Broadway musical, Oklahoma!, the character Ado Annie Carnes sings “I’m just a girl who cain’t say no.” Her inability to say the word leads to many a romance and causes her poor father, Judge Carnes, constant stress. While I’m not dealing with wild romances, I am a stressed-out father. Partly because my eleven-year-old autistic son, Mikey, is a boy who can’t say, “no.”

Mikey is only partially verbal and his go-to response to questions has always been, “yes.” Well, it’s actually more like, “yesh.” And while I (and many of his family members and teachers) have often found that cute, it is worrisome. Don’t get me wrong as I exaggerate a bit, Mikey knows the word, “no.” But that is rarely used and is mainly his response when told to go to bed or to the potty. Yesh is his answer to most questions:

“Mikey, do you like steak?”
“Yesh.” - A major lie since he eats approximately four things and none of them include any “real” food.

“Mikey, do you have any brothers or sisters?”
“Yesh.” – Another lie, he’s an only child.

“Mikey, did you clean up your crayons and pencils?”
“Yesh.” – A big whopper of a lie, as I look at about fifty of them strewn across the kitchen table.

And on and on the “yesh” answers come.

I’ve tried to figure out how many of Mikey’s yeshes are lies, how many are canned responses, and how many are because he truly doesn’t know what he’s supposed to say. I mean, is Mikey his generation’s Tommy Flanagan (those of you of a certain age should recognize the name of that great pathological liar created by Jon Lovitz)? I kind of think not (especially since he hasn’t mentioned Morgan Fairchild at all).

In a way, I kind of wish Mikey were lying. At least that would be somewhat easy to correct. But Mikey’s yeshes, whether intentionally misleading or not, worry me because of the potential trouble they could get him into.

It’s bad enough to get the occasional note home from a teacher saying that Mikey said he had a brother and that he was going to eat a cheeseburger at a weekend BBQ. But I really worry about if he ever has to interact with a police officer, fire fighter, or medical personnel. And I really lose sleep over potential interactions with strangers.

I’m always appreciative when I read about local first responders being trained to interact with autistic individuals. And Mikey has been fortunate to have the local fire department visit his school a few times. But, sadly, not every community offers autism training to those types of professionals. And as much as I strive to be with Mikey as much as possible in public and try my best to inspire a different response out of his mouth, I have to accept the fact that there will be times when I’m not there and he needs to be able to respond for himself.

As an autism community we need to keep pushing for proper training in all aspects of our children’s environments. It’s a great step in the right direction to hear that many schools, police, and fire departments are, or will be, requiring autism education training. That progress, combined with our efforts as parents to teach our children to communicate, will ensure not just yeshes, but a myriad of appropriate responses.

I deal with the many yeshes, for now, and dream of a day sometime in the future where my Mikey will borrow a bit from Ado Annie and not be able to say “no,” because he’s met the love of his life. Yesh, that would be truly amazing.

ABOUT THE AUTHOR
Dan Olawski blogs about his son Mikey and life as an Autism Dad. He lives with his family on Long Island, where he works as a writer/editor/social media marketer. When he's not having tickle fights or playing skee ball with Mikey at Chuck E. Cheese's, he works to spread autism awareness through charity work and his writing. Dan can be contacted at dantheeditorman@gmail.com.

Wednesday, July 6, 2016

Re-Post - PB&J: The Secret to Being a Great Autism Dad

The Organization for Autism Research (OAR) has re-published one of my older blog posts called, "PB&J: The Secret to Being a Great Autism Dad." Please check it out and look for new blog posts in the future on the OAR site and this site.

Wednesday, April 6, 2016

Somewhere ‘Tween

The three tween boys sat in the row behind me waiting for the movie to start. At that time in December of 2004, my own little boy was still in his mother’s womb...to be born on April 6th, 2005.

The boys, all wearing baseball caps and superhero-themed shirts, sipped their sodas and munched on their popcorn. Their conversation about the movie we were about to see (The Incredibles, I believe) and what they wanted for Christmas made me laugh and smile as it reflected the topics they cared about the most and what seemed to be the camaraderie of typical boys of that age.

I listened to their chatter until the movie started, all the while looking forward to the day when my son would be sitting in the movie theater with his friends having a very similar conversation. I figured that’s the way things were and that’s how they’d be for my Mikey. Autism was the farthest thing from my mind that day...heck, I really didn’t even know what autism was.

Today, on this April 6th, 2016, as my now tween Mikey celebrates his 11th birthday, I know far too well what autism is—and that movie theater scenario is a distant fantasy. The difference between those typical tween boys and my autistic tween boy couldn’t be more obvious.

I look at my beautiful, amazing boy and I realize that, although he has just turned eleven, I have no idea what a typical eleven-year-old boy is supposed to do or how they are supposed to act. Mikey also wears a baseball hat and superhero shirt at times, but they are what we buy for him, he has no interest in them, specifically. Toys are an interest, but he doesn’t get influenced by seeing a commercial for a new toy and he still is attracted to toys that are for a much, much younger age range. While we’ve taken him to a few movies, he can barely sit through them (after the popcorn has run out) and has never requested to see one on his own (instead preferring to watch videos of children’s shows he should have outgrown already). And perhaps the thing that stands out the most, he has no friends. Yes, he has his "friends" that he goes to school with, but he has no desire for interaction and no awareness of that kind of relationship.

Where does all of that place him among eleven year olds...somewhere ‘tween typical and non-functional autistic? Mikey has always been very unique, even for a child with autism. A doctor once said he’s an atypical typical child with autism. Mikey’s a smart, artistically talented, happy little boy, but his chronological age doesn’t match his emotional or mental development. Mikey is not less, but he's definitely different.

Mikey’s not fully potty-trained. He also has an extremely limited diet and will freak out if you try to get him to eat something new. When at home, or in his classroom, those issues are addressed to keep him functioning, happy, and healthy. It’s mainly when strangers interact with Mikey as if he’s typical (for the most part, his autism isn’t obvious unless he’s stimming badly or being very loud with his echolalia) where my main concern is. When faced with Mikey’s lack of respect for personal space, loud outbursts, and Cheetos-encrusted clothes, most people don’t know how to react. But in general terms, I don’t care what they think or say as long as Mikey is safe and hasn’t done anything intentionally malicious.

Every parent of an autistic child, although some won’t admit it, wants their child to seem “typical.” (You know us in the autism community, we’re all about semantics. You can use some words, but not others. Even though we all know what we mean when we think or say them.) They dream that their child will have that moment in the movie theater. But autism often won’t let that be the case. And, we’ve all come to accept the differences in our child’s and our lives. We work hard to help them overcome those differences, and when they can’t be overcome, we try to minimize them. But, overall, the most important way to address them is with love, understanding, and patience.

When Mikey’s differences become obvious, I’ve never been one to shy away from explaining that Mikey has autism. Heck, I wish more people would ask me so I could explain autism and spread more awareness. Because, frequently, with awareness comes acceptance. And perhaps with that, Mikey can go from somewhere ‘tween to just another eleven-year-old.

I’ve got the tickets and popcorn waiting, little buddy. What movie shall we see?