Autism Dad: “Hey Dad!”

Ryan of late has begun calling me Dad. It’s practically all the time, Dad this, Dad that, like the way some guys overuse “dude.” Hey dad, check it outDad, are we almost there? And then, as the sun falls and the sky darkens, his voice softens: Dad, are we going to cuddle tonight?

 

When Ben does speak, he prefers “Daddy.” Just before Christmas vacation, I arranged to visit Ben’s first-grade classroom for the first time, a key part of my Autism Warrior plan. Ben was sitting in his little person’s chair in a semi-circle with five other kids with disabilities. Ben couldn’t contain his excitement, blurting out:

Daddy, siffme! Daddy, siffme! 

I glanced at his special ed teacher. “Can I sit with him?” She gave me the green light, something she would later regret. I sat on the little chair, engulfing it, with Ben on my knee. It felt good to hold Ben. I handed him a yellow Starburst. “Put it in your pocket for later.” The teacher glanced at me and I smiled awkwardly; it didn’t take long for me to feel like I was back at the principal’s office. Ben, forgetting for a moment that he was in class, blurted out: “Tac-o.” The teacher was prepared with a response:

Actually, we’re having pizza for lunch today, Ben.

I chuckled to myself, recalling how I too had once mistaken the same word .To Ben I whispered: “Later. I’ll tickle you later, I promise.” It was apparent that he was feeling altogether too comfortable with me.

I was there three hours. I got a better idea of what Ben can do and what he struggles with, which, it pains me to say, is most things. His teacher gave me a copy of Ben’s IEP. She told me flat-out that Ben will never be able to count. He won’t be able to read or write. Instead, the focus is on teaching him to live independently: dressing himself, brushing his teeth, putting on his shoes. One day he might be able to live at a group home and, if he’s lucky, hold down a basic job. I was hearing this for the first time. Ben’s classroom was adorned with holiday decorations and warm cheer, but for a long moment I disappeared into a cold reality. Maybe at some level I suspected it, but no one in an official capacity had ever said it to me so plainly and directly.

Later I accompanied Ben to recess and watched him keep to himself. He was in his own world, even more so than the other kids. But he was content, at times even ecstatic. An aide commented about Ben’s nature, which is invariably sunny and serene. I understand that the goal is to pull kids with autism out of their internal worlds, so they can join our reality. But what if Ben’s world is better than our world?

At recess a surprise came when I saw Ben hop on a bike with training wheels. As he trekked across the playground, his teacher told me Ben had outgrown that bike. I’d heard nothing about this from his mother, who is not a big communicator. It was a startling revelation, alone worth the price of admission. Ben turns 7 in February; now I know what I’m getting him! Another surprise: Ben is enrolled in a basketball program for kids with autism. I can’t imagine why anyone would want to conceal this, why his mother didn’t excitedly tell me about it? It is what it is.

So these are baby steps: I know Ben’s teacher and she knows me. I am on her radar. And even though Ben may not verbalize it, he was obviously happy to see me in his classroom. I left after eating lunch with Ben. As I bid them farewell, the teacher took me aside to thank me for coming. She mentioned that she had spoken with Heather, and that my ex was happy to hear that I was visiting the classroom. It felt good to be more involved in Ben’s life, to feel essential instead of expendable. I don’t know that I felt like an Autism Warrior.

What I do know is that I felt like Dad.

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Editor’s Note: Also at http://www.facebook.com/pages/Autism-Dad/160327080653310

Posted in January 2011 | Tagged , , , , , , , , , , | 52 Comments

Autism Dad: Happy Thanksgiving!

Thanksgiving eve – San Diego, CA. Ben’s still in his PJs. Just now he ripped off his top and planted himself on a tree trunk. He’s sitting there as I write, soaking the late afternoon rays, in his own world but very much in my orbit too. Dad is somewhere—maybe at the donut shop—while Ryan is curled up in front of the TV. And Katie, my angel, is in the kitchen preparing for tomorrow’s feast. It’s been a long time since I’ve felt part of a real family, and a long time since I’ve had a traditional Thanksgiving. That notion of happiness that I harbored and which seemed so elusive…right now, it’s staring me in the face.

For this taste of “happiness” I am grateful. And truth be told, it tastes even better than the turkey. Happy Thanksgiving to everyone.

 

Posted in November 2012 | Tagged , , , , | 4 Comments

Autism Dad: Long Time, No Talk

It’s been a while since I last posted, and I hope everyone is doing well. Ben is doing nicely and is just as sweet as ever. He’s also making some nice strides verbally and even socially. My hope is to resume the blog in the near future; in the meantime, here is a pic of Ben that I took last week. He’ll be 9 in February. I’ll be in touch soon.

Best to you all…Autism Dad

Posted in November 2012 | Tagged , , , , , , | 9 Comments

Autism Dad: Sorry Ben, I don’t love you THAT much

Took the boys out to dinner–well, Chuck E. Cheese. Yes, it’s true, I subjected myself to that. Of course the boys had a blast. Ben wanted to climb into a big red space ship.

First he took off his shoes. Then he looked at me with his big round eyes: “Daddy come.” But he was smiling, because he knew there was no chance in hell that Daddy was going to maneuver his body into that cramped space ship.

I hate to say NO to Ben, but you gotta draw the line somewhere :)

Posted in April 2012 | Tagged , , , , , , , | Leave a comment

Autism Dad: Autographed Football

Want to recognize a great dad and Autism Dad participant, Dennis Mashue, who shared how he and his boy spent spring break:

“Tuck and I just had a great spring break trip to the Blue Ridge Mountains in North Carolina. We camped and drove mountain roads all the way up into Pennsylvania, then back to Michigan. Had a great time and he got the celebrity treatment at Appalachian State University. Met the football team, head coach, town mayor, newspaper reporter. He was so sick of photo ops and so was I. Did a lot of awareness raising, which is good. The big success of the trip is that Appalachian State U offered to put up a website for a great camp for families who have a child on the spectrum. KAMPN4AUTISM.com I serve as a parent advisor for what is gonna be a great facility in Boone, NC. If you get a chance, check out GR8 AutDoors on Facebook. I put it up as a place to share pics, videos and stories about our kiddos’ outdoor adventures. Feel free to join and post some stuff on there.”

http://www.facebook.com/groups/286717908074544/

 

“This is Tucker getting an autographed football from ASU head coach, Jerry Moore. If you follow college football, his Div I-AA Mountaineers came into University of Michigan’s Big House in 2007 and delivered one of the biggest upsets in college football history – the Wolverines were ranked #5 at the time.”

 

Posted in April 2012 | Tagged , , , , , , , | Leave a comment

Autism Dad: “Sleep with me, Daddy”

In case you haven’t had the time to read some of my early postings, here’s one of my early ones that kind of sets the stage. Have a good week ahead…

Sleep with me, Daddy

I remember feeling like a voyeur as I watched Teresa give little Ben a bottle. The TV was turned off, the sky nearly black. The room felt safe, like the warm blanket in which Ben was lovingly wrapped. He grasped Teresa’s fingers and played with each one (a sign, only in retrospect, of his autistic tendencies) while his mother held his bottle. This became their routine. The intimacy between mother and baby was beautiful to behold. But I was an observer, not a participant; or worse, an intruder.

Divorce is too frequently the outcome for families with an autistic child. But in my case, Ben’s autism was not the cause, only a contributing factor; remove it from the equation and our marriage would have remained on a slippery slope, sliding inexorably toward divorce.

Now I find myself a single dad living with my dad in the suburban home in which I was raised. I have the boys Thursday through Monday every other week. It’s taken me a while to develop my confidence, to find my way as a dad, but lately I have made considerable progress.

One example is the post-dinner routine, to which I am now well accustomed. I fill the tub and Ryan invariably whines that it’s too hot. I get them in, give them a little play time, and then take a wash cloth over their lean bodies. At this point, it’s time for jammies, kisses for Papa, a book (on a good day), a little snuggling, and lights out.

Except for one problem.

My boys are pretty much incapable of putting themselves to sleep. They require that I get under the covers and coax them to sleep. It can probably be traced to the fact that they regularly slept with their mother from day one, contrary to what most friends and family counseled us. During our marriage, while Teresa was nestled with the boys, I was relegated to the guest bedroom. Once again, I was the intruder in my own home, or at any rate that’s the story I adopted. One time, when Teresa was putting Ben down, I tried to crawl into bed for a brief family cuddling session. I sorely needed the connection with both of them, but Ben quickly rebuffed me:

“Daddy, go.”

I looked at my boy with disbelief. And then again:

“Daddy, get out.”

I made the long walk back to the downstairs bedroom with my tail between my legs. The directness with which my two-year-old could banish me from my own bed, and his apparent disregard for my feelings, didn’t hurt as much as baffle me. For Ben, it wasn’t anything personal—it just happened that I was disrupting his nightly routine. That this behavior showed signs of trademark autism was completely lost on me. I just thought he was really into his mom. He was and is, of course. But he’s also really into his routine.

**

I’m finally ready to put the boys to bed but, as expected, they’re lobbying me to get under the covers. That’s not ten years’ hard labor, as my mother used to say. On the other hand, I have writing to do, I’m facing deadlines and, truth be told, I want to watch a movie with my dad, which is our routine. If I close my eyes now, I’ll be down for the night.

Decision time. I tuck Ben and Ryan under the covers and try to sneak out of the room as unobtrusively as possible. Ben, a light sleeper like many kids with autism, is wide awake and senses my movements amid the darkness. Ben’s verbal communication is usually limited to practical one-word utterances. So it comes as a great surprise when, just as I am about to sneak away, he says:

“Sleep with me, Daddy.”

When your little boy utters those simple, beautiful words, it’s hard to resist; the deal’s done. And the father who can resist doesn’t have his head or heart in the right place.

This little breakthrough causes my anxiety to recede—who cares now what challenges tomorrow brings? Accordingly, I get under the covers and immediately feel the warmth of Ben’s sun-bronzed body melt in my arms. Ryan doesn’t want to be left out, so he maneuvers to my side. It occurs to me that my boys are jockeying for position, competing for my attention – and for a long moment I relish the idea. There is no one else in the room—no lawyer, mediator, judge or jury—to witness this perfect, unguarded moment, but me and my maker. Ben and I hold each other in this fixed position throughout the night, our bodies wrapped in close embrace.

The silver lining of my divorce is the empowerment being a single dad brings me, the increased responsibility that is demanded of me, and the rewards, for assuming that responsibility, that are mine alone to relish. I am no longer voyeur or intruder, second fiddle or second string. On Thursdays through Monday, twice a month, I am the center of my boys’ universe.

Posted in April 2012 | Tagged , , , , , , , , | 4 Comments

Autism Dad: A Special Bike

Papa got Ben a special bike for his 8th bday. He looks rather pleased with himself, doesn’t he? :) Happy Friday everyone!

Posted in April 2012 | Tagged , , , , , | 2 Comments

Autism Dad: Love Caught on Camera

I will not be with the boys for Easter, but I am with them now and we will be together all Saturday. Tomorrow we are going to have a “staycation” at a local hotel with a swimming pool! Tonight we made camp in the living room and the boys are sleeping soundly as I write. I’ve taken a bunch of really good pics, and depending on how long you’ve been following me, you may know that taking good pics of Ben can be a nearly impossible task. And I’ve heard from enough parents with kids on the autism spectrum to know that I am not alone. Right after I tucked the boys into our makeshift bed in the living room, I took several shots of the boys. Maybe it’s because they were in bed and extra comfortable with each other, but for some reason they were just glowing warmly and smiling at each other. I asked them to pose; instead I got something much more authentic and spontaneous—and eye contact from Ben like you wouldn’t believe. Glad I caught the moment on camera and can share it with you. More pics to come later. Wishing everyone a Happy Friday-Happy Weekend-Happy Passover-Happy Easter!

Posted in April 2012 | Tagged , , , | 4 Comments