I Remember the Sunsets

A year ago today (December 10, 2021), I rushed with my son (Mikey) to Stony Brook Children’s Hospital because whatever was making him ill was out of control and could no longer be dealt with at home. Within a few hours, we were admitted to the hospital. The two of us would stay in the hospitals (including the second rehab hospital) for three months.

The following photos were taken during that challenging and frightening time period. They were my attempt to both stay creative and have an outlet to deal with my fears and stress…

Christmas Decorations

We didn’t get to have a Christmas in December of 2020 because my wife (Lynne) was in the hospital ICU (she wouldn’t come home to us until April). So, we were really trying to plan for a nice Christmas holiday as a family. My brother-in-law had put up some lights outside our house…that was as far as we got with celebrating Christmas. I snapped these photos on one of my brief visits home from the hospital. For me, the lights served as a reminder. As a goal of a future celebration to come when we all could be together again.

Sunsets

The location and design of the Children’s Hospital lends itself to amazing sunsets. Mikey was in several rooms there during our stay and each room offered an amazing display of Nature painting the sky as night approached. I would look at these as a comforting sign that Mikey and I got through another day and were another day closer to him being well enough to move on from this temporary residence.

My Beautiful Inspiration

My entire purpose…my main inspiration…was to be there with Mikey in the hospital every possible second to guide his recovery and be his support through scary times. And there were moments when that was incredibly difficult. I would go to sleep at night in the chair or the couch pulled right next to his bed so that the two of us could see each other at all times. He often would wake up when the nurses would come in to do vitals or give him medications. I would wake up at times extremely worried about him. But the two of us were there for each other. All we had to do was open our eyes and we would be comforted by the loving face staring back at us.

A Constant Beacon

This simple, yet beautiful light was present in each of the rooms that Mikey and I stayed in at the Children’s Hospital. Many times at night it would be the only lamp lit as we slept. It provided just enough light for when the nurses would sneak in to check on Mikey, or for when I would want to shuffle around the room pondering the next day, but not wanting to awaken my sleeping child. Sometimes I would just open my eyes the slightest bit so I could see this beacon of light. I welcomed it as a lighthouse guiding us through a stormy period.

Unusual, But Somehow Settling Architecture

These cube-shaped buildings are part of the hospital grounds. They can be seen from most parts of the hospital area, and from the roads leading up to and away from the location. When I worked across the street from the hospital on the University side, I would often see them as I strolled around campus. But, for me, when I needed something to distract my eyes and brain, they existed as a somewhat mind-settling curiosity to be examined. I would comfort myself by staring at them…especially at night when they became part of the aforementioned beautiful sunsets that bathed the sky.

My mind will never forget these images and what they represented, or how they got me through my most difficult time as a parent. There have been many difficult times in our lives the past two years. But, as these images do in my mind’s eye, we persist.

September 12, 2001 – An Uplifting Light in a Moment of Darkness

The days leading up to September 11, 2001, had been tiring, but productive. On Saturday, the 8th, we had started the wall and ceiling painting phase of our living room renovation. Sunday was another full day of painting and on Monday I painted some more on my lunch hour (I had been working from home for a few months after the company I worked for shut down their New York City office — my commute was from our bedroom a few feet over to our home office/guest bedroom). Much shorter than my previous hour-plus train ride on the Long Island Rail Road to the midtown office building with the great view of downtown NYC.

On the morning of Tuesday, September 11, 2001, I was milking my short “commute” and still lounging in my bed when my phone rang. It was my brother-in-law telling me to turn on my TV because a plane had crashed into one of the World Trade Center towers. A short few minutes after that I watched a second plane crash into the other tower, and it was painfully obvious that we were under attack.

I tried doing my work as usual that day, but as it was for many Americans, my TV stayed on and tuned to the news. It served as a frightening distraction. I took a few emails and phone calls from co-workers based in our Boston and California offices. They knew I was in New York but didn’t realize how far away I was from the City out here on Long Island. They all told me to log off and forget about work for the day. I wish I hadn’t followed their advice, because all I did was glue myself even more to the TV coverage.

By the end of that tragic, heart-wrenching Tuesday, I was numb. I wasn’t sure how I’d be able to focus on work the next day and I certainly was in no mood to continue painting our living room. I felt sad, depressed, scared, and helpless. I logged on to work, did my assignments, but did not communicate with anyone.

As lunch came that Wednesday, September 12th, 2001, I dragged myself down to the living room and started to paint. A police helicopter flew low in the sky outside my window, which would become a regular occurrence for the next few days. It was both comforting and disconcerting.

Suddenly, I heard the faint sound of knocking on the door that separated my wife and my part of the house from my mother-in-law’s apartment. I was standing on a ladder and yelled out, “Come in.”

My mother-in-law came walking in and beside her was my three-year-old niece, Kristin. I had forgotten that my mother-in-law was babysitting her. This adorable, loving child was a welcome distraction.

I got down on my knee to hug her and then the two of us wound up laying on our bellies face-to-face. The photo accompanying this essay was taken at that moment.

We then had a conversation that was so innocent and sweet that it managed to be uplifting enough to cheer me up and get me through the next few days.

“How are you, Kristin?” I asked.

“Good,” she said with her bubbly exuberance.

“I’m glad,” I said.

“How are you, Uncle Dan?” she asked with a smile.

“I’m actually very sad today, honey,” I responded.

“Why are you sad,” she asked.

“Some bad men did some very bad things yesterday and hurt a lot of people,” I said while trying to be honest but vague.

“My daddy told me that,” she said.

“But do you know what?” I asked.

“What?” she asked in anticipation.

“I don’t feel as sad right now,” I said.

“Why?” she asked.

“Because you came to visit me today and made me smile,” I said.

“Really?” she asked with a smile on her face.

“Really,” I said and smiled back at her.

She looked so happy and kind of proud. we proceeded to talk and laugh for a bit more before I had to go back to work.

I’ve never forgotten that moment, now twenty years ago. The smile and laughter of a child, who’s innocence shielded her from the evil that had happened the day before, was simple but powerful enough to raise the dark curtain I found myself covered by and let the light of healing love shine through.

Celebrating My Son on Father’s Day

Mikey and Daddy

Today was my eighth official Father’s Day. Before my son, Mikey, was born I never completely appreciated this annual celebration. But, now, it’s one of my favorite days of the year.

I’ve come to realize, though, that this day is kinda backwards. I feel like I should be honoring my son instead. If it weren’t for this amazing little boy I’d never know the absolute joy of being a dad.

Now, I was an uncle to three beautiful nieces before Mikey was born. I love them all and they had me wrapped around their little fingers. It goes without saying that I was always a little envious of their fathers. After Mikey came along I realized that you love your nieces and nephews, but loving your child is to a completely different level.

It wasn’t until having a child of my own that I truly understood the pleasures and pains, ups and downs, and unconditional love required of a parent. Mikey offered some challenges as a newborn and then, of course, there was the autism diagnosis…all requiring me to dig down deep for strengths I never knew I had. There is no doubt in my mind that Mikey has made me a better man.

The biggest changes Mikey made necessary for me were patience level and being unselfish. Those traits come in handy on a day-to-day basis and I consider them my duties as a good father.

I know Mikey knows that I love him. But I don’t think he knows, or will ever know, just how much I’m in love with him. He has no idea that I often sneak looks at him from across the room as he dances by himself with the complete freedom and joyfulness that only a child possesses. He doesn’t know that I stare at him sometimes when he’s sleeping and smile at his cute little nose and his rosebud lips that he stole from his mother. Those are the innocent, meaningful moments that erase any stress or frustration that may come from raising an energetic, stubborn little boy.

So, on this day where we celebrate fathers I want to turn it around and celebrate my son. Thank you, Mikey, for making me truly love and understand the word, “daddy.”


I originally wrote this on Sunday, June 16, 2013 and posted it on my blog: http://www.mysongbirdsingsthetruth.com/2013/06/celebrating-my-son-on-fathers-day.html

In Memory of the Pulse Nightclub Victims

I wrote this on June 13, 2016, the day after the tragic shooting at Orlando’s Pulse nightclub, which killed 49 people and wounded dozens more. Yesterday, this popped up as a memory (a very sad one) on my Facebook account:

Mikey's Rainbow for Daddy
Mikey’s Rainbow for Daddy

To my LGBT family and friends…I love you. I’ve always loved and respected you, but in light of the tragic event in Orlando yesterday, I felt I should make it loud and clear.

As a straight man, I know I can’t understand what you’ve gone through in your lives and what yesterday’s horrific murders mean to you. But I want you to know that I feel intense sadness and a deep hurt in knowing that such evil could be done based on who someone chooses to love and be intimate with.

Yesterday’s killings brought to light, again, how dangerous it can be in our world to be different. For most of us, human differences are things we notice, but they are not inspirations to evil actions as perpetrated by this deranged, homophobic killer from Florida. And when these differences are those that are portrayed as bad or sinful based on some ancient, misguided beliefs, well, it makes me feel even sicker to my stomach than I already do.

People have been posting images of rainbows since the mass killing yesterday. I’ve always loved rainbows and they’ve become part of my daily life since they are also used in relation to autism awareness. I’m posting a rainbow drawing that my autistic son, Mikey, made for me last Father’s Day. Please accept the love with which this was drawn, and the love with which it is cherished by me, as an expression of my love to you and to those who perished on that sad, sad Sunday.

They say there’s a pot of gold, a fulfillment of dreams, at the end of the rainbow. I hope that, someday, the dream of total acceptance of all of our differences, whether it be sexual orientation, special needs, nationality, etc. becomes a reality. Until that day, I’ll keep searching for the end of the rainbow. Meet you on the other side.

He’s Just A Boy Who Can’t Say No

Mikey In Silhouette

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 [now 16], 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 it 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 or meat.

“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 was 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.


This blog was written about four years ago. Mikey still has issues with yesh and no, but as a teenager, he now knows the word no and uses it most defiantly (especially at bed time or when told to clean up his mess). 🙂

Flashlights and Flowers

Flashlights and Flowers 1

These beautiful tulips are blooming right outside my front door. During the day they almost glow with their beauty. I got to wondering what they would look like at night with a light directed on them. So, grabbed my handy LED flashlight and my camera and started shooting.

Farmingville Vietnam Memorial Photo Shoot

Please enjoy this slideshow from a photo shoot at Farmingville, New York’s Vietnam Memorial site. This beautiful memorial “acknowledges the service and sacrifice of all Vietnam Veterans.” If you’re ever in the area, I recommend a visit. If you would like to see the larger, full-size versions of these images, please let me know.

It’s Okay…

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.

This blog was originally written a few years ago for the Autism Society’s Blog. It has been re-posted online a few times since its original appearance.

Autism Awareness Month

PB&J: THE SECRET TO BEING A GREAT AUTISM DAD

PB Cropped

Yes, it’s true…the secret to being a great Autism Dad is PB&J. (Wait, why are you opening the cupboard? Put the peanut butter back. Yes, and the jelly.)

No, no, you won’t be needing any bread for this.

The PB&J I’m talking about is much different…and less sticky. PB&J equals: Patience, Being There, & Joy. Okay, okay, I know I cheated a little with the “B” meaning Being There, but let’s just call it poetic license. Heh, heh.

Patience
I’ve mentioned before (in previous blog posts) the importance of patience for an autism parent, but I think it’s even more important for Autism Dads. Men are usually considered to be the more impatient parent (“Just wait till your father gets home!”), but whether that’s a curse of our genes or a gender stereotype, I believe we just need to work a little harder to find that much-needed virtue.

And, let me be clear, the patience I’m talking about is well beyond what outsiders would imagine. No, for those of us in the Autism Dads Club, I’m talking about the type of patience usually attributed to a saint. Saint Autism Dad needs to take a deep breath when his child throws his food on the floor for the fifth time in a row. He needs to turn the other cheek when his child’s humming stim rivals that of a thousand bees in his ear. He must speak softly and calmly when his actual urge is to scream and yell. I know your struggle, Autism Dads, but, if we try hard enough, perhaps one day we will all be canonized.

Being There
I’ve come to learn in life that being there is half of the secret to living. But I don’t just mean showing up, it’s what you do while you’re there. An Autism Dad needs to do everything a father of a typically developing child would do…and then multiply that by a hundred.

I know that my son, Mikey, loves the times we do the usual father-son things like tickle-fights or going to the park. But I believe deep down he truly appreciates the times I’ve been with him at the doctor or did a parent training session with him at his school. It was quite evident to me that Mikey expects me to “be there” for him when, due to my recent back injury [now, almost 12 years ago], I was unable to do all those things with him and his behavior suffered because of it. As my back has healed, so too has my relationship with Mikey.

Joy
Joy might, at first, seem like a difficult concept for an Autism Dad to comprehend. But joy is simply an extreme happiness. A happiness that takes great pleasure in even the littlest of things.

As Autism Dads we have many great opportunities to be joyous. Our children face a daily battle at times just getting through the day…each time they overcome those challenges is a time to be filled with joy. Perhaps your child has just beaten a severe stim, or tried eating a new food, or successfully used the potty. Let yourself see the joy in that, Autism Dad. I know my heart overflows on those rare times that Mikey looks me straight in the eye and says, “Daddy.” You don’t need to look very far for a joyful occasion.

So, Autism Dads, you are all wonderful, strong, loving parents and your children appreciate you. But if you’re ever feeling at a loss for how to cope, just reach for the PB&J. Nope, not the sandwich, this PB&J is far more filling and satisfying.

Autism Awareness Month
An Autism Awareness Month Blog Post

I wrote this piece many years ago and it has since been re-published in various places (the Autism Society blog and, most recently, the Organization for Autism Research’s blog in 2016). It has always been one of the most popular blogs I’ve written and I appreciate all of the comments and feedback I’ve received about it. I hope you enjoy it too.