April Walks With Autism

Sometimes I think that the hardest thing in life is letting go.

When you are a child you have a favorite toy/doll/blanket and at some point, your parents force you to let it go. When we’re kids we have no idea why, and truthfully our parents can’t even really reason with us why it’s necessary. But the good thing is, that toy/doll/blanket is just tucked away somewhere. We can still peek at it once in awhile, even hold it up to our nose and inhale that deep sweet smell of sweat and tears and grime and love. Sure we have to put it back again, but the security of knowing it’s there is sometimes good enough. So even though we’ve let it go what we’ve REALLY done, is just learn to live without it.

This is why death is so difficult. You are forced, usually unexpectedly, to let go of someone that is very dear to you. And there’s no looking back. You just….. let go. And it’s over.

I’ve been married for 11 years but once upon a time I dated a boy that I loved with every fiber of my being. We spent 3 years of our lives together and one day he decided that he just didn’t see himself having children. I had to let him go. It was one of the hardest things I have ever had to do. I loved this man desperately as much the day I left him as the day I met him. I felt like my life would never repair. Little did I know, it was the best thing I would ever do. I let him go and…..started over.

When my now 8 year old son Jared was born he had a congenital heart defect and at 8 days old was taken into open heart surgery. When I look back on that time of my life, what is odd to me is that the hardest moment was NOT when they came and told me, “something’s wrong.” Not even when they told me, “Oh my God this is serious, something is REALLY wrong and here’s what it’s called.” It wasn’t even when they took his fragile little 3 day old body in for the first round of surgery. And even though a sea of tears poured out of my eyes as they wheeled him to open heart surgery, the hardest part for me was the day they put him on the helicopter to take him to the University of Michigan hospital. Why? Because at that moment, I had to let him go. I had to trust someone else and put my faith in him that Jared was going to be ok without me. I was only his mother for 5 days at the time, but one thing I knew for sure is that my child needed me at all times. Letting go is not easy, but sometimes the best thing we can do. Clearly this was the best thing I could do for Jared. I let him go and watched that helicopter fly away with my newborn and fell apart. But I had no choice. It was let him go or let him die. I let him go, and his life began. Again.


Today I took Luke to kindergarten. Why this was such a monumental step compared to preschool I don’t know. But it was. We tried really hard to prepare him, we talked about it for weeks, made him social stories, worked really hard at therapy all summer long to get him ready. But he wasn’t ready. And guess what?

Neither was I.

Luke has made amazing strides, and as I’ve said before ~many people who meet Luke ask me, “Where’s the autism?” “He seems pretty ‘normal’ to me.” But today, standing there in a sea of 200 other kindergartners, I couldn’t help but notice mine was the ONLY one screaming. Not the only one clutching his mother, but the only one clutching his mother with such an intense fear in his eyes it makes you want to scoop him up and shelter him for the rest of his life. Mine was the only child who refused, absolutely refused to get in line with the other children. Mine was also the only child whose mother got to walk him to his classroom, with an entourage of 4 other assistants.

We got to Luke’s classroom (he did walk by himself, by the way) and when we got there, I got down on my knees to get to his level. “Look at me, Bubbah.” No looking. He knows. He knows if he looks at me he’s got to own it. And there was no way Luke was going to own this one. Luke was not about to let go. So how could I?

3 members of the entourage stood there, as if to say, “well, what are you going to do now?” And honestly I had no idea. My son, my precious baby, was having such anxiety, such fear that the terror in his eyes was causing me to falter.

I could almost hear the propellers of the helicopter starting to spin.

But today I had a choice, right? I could have told his entourage to screw off, that I was going in with him today. And damnit I could have held his hand, held him all day long if that’s what it took to make him feel better. Better yet (and this thought crossed my mind) maybe I should just home school him? Maybe I should take him back to his preschool for one more year? Maybe he’s not ready?

The propellers are getting louder, I’m starting to feel the wind kick up.

The moment of truth.

The entourage is waiting for me to make a decision.

And I let him go.

And just like Jared, today Luke started a new life. A life without me. A life of independence from me. When his team literally pried him away from me (and it took two adults to do so) they may as well have ripped my heart right out of my beating chest, because that’s what it felt like.

Letting go is one of the hardest things in life. But most of the time, it ends up being the best thing we can do.

After he left my arms, I ran to the stairwell around the corner and didn’t look back. I just sat there and cried. I cried while I listened to his screams.

Because autism is when you can’t communicate why you are so bloody scared of a classroom.
Autism is when the transition from summer to school is so painful all you can think to do is scream.
Autism is when things that are new cause you so much anxiety, it actually hurts.
Autism is when you don’t want to let go of things that are precious to you, like your routine. Or your mom.

Overcoming autism is learning to let go and being ok with it.

Wait a minute, being a parent is learning to let go and being ok with it.

Let the helicopter come. I’m ready. Luke’s ready. I let him go. He let me go. A new journey begins.




When I picked Luke up, he was smiling. His entourage gave me a good report and were extremely encouraging about his day. His screaming lasted about 30 minutes, as did my tears.

And Luke got not one, but TWO new transformers today!

Since Luke was diagnosed with autism almost 3 years ago, I’ve given this topic a lot of thought. It has come to a head for me several times in the last few weeks so of course the best thing I can think to do is write about it.

We went to Arizona a few weeks ago to visit my parents. I was scared to death the travel with the boys, sans husband. You never know how Luke is going to react. Airline travel presents a whole host of issues for autistic kids. Busy airport, unknown scenarios, lots of transitions, waiting, having to take shoes off (OMG!), handing over security items TO security, loud noises, strange people, on and on and on. Then we get on the plane to succumb to confined spaces, loud noises, the expectation to be quiet and sit still for hours, etc, so on and so forth. Last time we traveled he did “ok” but Jeff was with me so we were able to manage things with a bit more ease. This time it was just me, an overstuffed backpack for each of us, and a laptop for me to carry as well (so the kids could watch movies of course!). So hands full, we headed out.

I encountered one of those moments where I actually felt bad, guilty even for selling Luke short, even in my mind. He was…….

a PERFECT traveler.

He was SO excited to go on the airplane! I think the anticipation alone of getting to the airplane helped him to overcome all of the actual airport drama. He carried his own backpack the entire time, took his shoes off and placed them in the bin on his own, followed my directions, stayed close, and listened well. He marched proudly through the tunnel and onto the airplane where the loud engine noises and tight spaces didn’t bother him at all. He buckled himself up as though he were a seasoned business traveler. Sure, he got a bit antsy at times when he couldn’t understand why it took so long for the brown drink cart to get to us but generally speaking, he was utterly amazing.

On the way back home, we had a one hour layover in Houston. Needless to say after spilling a large brown drink everywhere and making 2 potty runs, we breathlessly made it to the gate as they announced, “Last call for Nashville!” We hustled down and got in our seats as everyone gave us the evil eye. We got in our seats only to sit on the tarmack for 20 minutes while they attempted to fix the air conditioner, to no avail. Um ~ think about this people... Houston, Texas to Nashville, Tennessee with no air conditioning. Really? I know there’s the whole “once you get up at high altitudes it cools down,” bit but, REALLY? So Luke is getting a bit restless as we sit on the tarmack. At this point, I assure you, I am having a more difficult time keeping it together than he is. He starts kicking the seat in front of him. Not super agressivley, just more, putting his feet on the seat and then locking his knees down to create a gentle bounce. This must have really irritated seasoned business traveler with his snazzy Bose sound system attached to his iphone. (Purchased, no doubt, via the Skymall catalog) He turned around, and no, he didn’t glare at Luke. He glared………….at me. And everytime Luke bounced the seat, Dude’s heavy eyes came back upon me.

I’m going to quote my own damn blog right now. “Grace: something we should offer each other more often.”

It’s at this point I want to scream, “DUDE! REALLY? The kid has AUTISM! He is NOT screaming, he is NOT beating the crap out of me, he is NOT throwing things, he is NOT thrashing everywhere, Do you have ANY IDEA which a HUGE deal it is that he is ONLY bouncing your seat?”

Instead I say to Luke, “No no Luke, stop kicking the seat or that man is going to get really upset!” And then redirected Luke with some sort of magic trick I had in the backpack and did I mention there was no air conditioning so all the while I am LITERALLY dripping with sweat?

For the rest of the plane ride, I couldn’t help but wonder: if autism had a sign, a visual signal to people, would it make it easier for others to understand? Would it make it easier for people to offer “us” (autism parents and peeps) grace? I mean, I know I’m his mother, but take a look at Luke ~ he’s a beautiful child (she says with no shame whatsoever!). You can’t SEE it. There’s nothing about him that looks, “off,” at all. There’s nothing, “not normal” (ha ha) about the way he looks.

As a society, I think we tend to give grace in the more “obvious situations.” A wheelchair. A cast. A brace. A cane. A walker. Even down syndrome children tend to have a specific look that marks them as special. Children and people with physical disabilities often have a marked trait that shows them as unique. A missing hand. A crooked neck. A shorter leg that creates a limp. An arm that stays bent all the time. Muscles that don’t work how they should, creating visible signs of atrophy. Autism doesn’t have any of that. Autism has screaming, physical violence, hands over ears, screaming, heads banging against walls, flapping hands, kicking, screaming, throwing, thrashing, anger, walking on toes. And does society know that’s what autism looks like? No. What society knows is...

that’s what a temper tantrum looks like.

I had a tshirt made for Luke last year that says, “Hey! Keep staring and you might just cure my autism!” I usually wear 3 autism awareness bracelets at once, hoping, praying that someone will put it all together. I’ve made my full time job trying to raise autism awareness and I wonder, “would it just be easier to put a big tattoo on Luke’s head?” “I have autism, deal with it?”

I guess my point is, I wish it didn’t have to be this way. I wish we didn’t have to spell it out. I wish it didn’t take a special “look” or a marked characteristic to make people understand. And herein lies the reason. The reason why awareness is so important. The reason I have dedicated countless hours to Autism Speaks. The reason why, even though I pull my hair out on most days because my cup SO runneth over, I can’t stop. I want, I NEED society to reach a point, where we all just “get it.” Where I don’t need to explain. Where the masses understand.

But the other side of the coin is, we can apply this to different parts of our lives, too. It’s not just about “special needs.” Sometimes it’s about “people needs.” If someone is more quiet than usual, it may mean that something is weighing heavy on their heart. And then again, it might not. It might just mean that you, as a friend need to be aware that things are changing. Offer grace, offer space. Sometimes people do things that are motivated by reasons we don’t understand. Things that are out of character (to our eyes). Our job, as humans is to try to understand. To get behind the reason, and sometimes even be a crutch should that person begin to fall. And sometimes, even as a grown up, don’t you wish you could put a tattoo on your own head that says, “I’m just not up for it today!” or “Leave me alone!”

We need to remember these moments, our own days of struggle when we are looking out at others. We need to remember that there were times that we were children ourselves and we don’t even remember kicking the seat in front of us.

We also need to remember that walking in someone else’s shoes can sometimes be a much bigger pain in the a** than walking in our own.