That Time I got Throat Punched by Autism

I knew Caleb had Autism before anyone else. I knew it even before I ever spoke it out loud. Before I knew it was Autism, I knew something wasn’t right.

The first time I recall concrete symptoms is probably 15 months old. But if I scrutinize really hard, I think I can recall some subtle signs at 9 months old. It took, honestly, until he was 22 months old for anyone else to see it. And then it still took me “making a case” for it.

Upon reflection, how odd it is to me that I lived on this lonely island of knowing the truth for the better part of a year but yet I still struggled so hard to find acceptance.

In the beginning, the denial phase made me google like a mad woman to see if it could possibly be anything but Autism. I don’t like admitting it, but in an effort to remain transparent, I will tell you that I wanted it to be anything else. Genetic syndrome? CMV? Severe hearing impairment? Those things aren’t exactly glorious either. And there is always the adage of “it could always be worse.” And yes, there is truth in that. There are terribly scary things like pediatric cancer, congenital heart defects, pediatric transplant lists. I think this personal struggle I had comes from two places. 1) accepting ANYTHING is different about your child is an extremely hard things to accept as a parent. 2) I do not do well with abstract. I don’t like things subjective. Autism is, in essence, exactly that. There is no blood test, genetic panel, machine induced readings that can be done to tell me with 100% certainty and most importantly to a concrete, left-brain dominated purveyor of logic- to tell me why. I’m married to a man who is a molecular biologist by education and medical researcher by profession so yes, I have educated postulations but at the end of the day….I don’t know why “my son.” I do not tend to go with flows. I tend to make thoroughly detailed plans with contingencies for a dozen different “what ifs.” I did not plan for this. I did not have a contingency action plan (for real ya’ll….I say “action plan” daily). And then….no one could tell me why. And I just find that difficult.

At 21 months old I took Caleb to the audiologist to have his hearing tested because 1) delayed expressive language 2) delayed social skills 3) decreased environmental awareness/responsiveness. And I knew that she would tell me he needed tubes and that there were likely some decent decibles being knocked off his hearing. But I also knew that it wasn’t what the bigger picture was. I knew that whatever disadvantages he was having with his hearing would not account for how statistically significant the gap was in his language development. I told her before we started testing that day “I am probably going to take him in for a developmental evaluation because I have concerns about Autism.” She did the testing. She told me, as I anticipated, yes, he needed tubes, yes he wasn’t hearing optimally. And then she said, “And I’d go ahead and schedule that developmental evaluation.”

And I felt like she literally just punched me in the throat.

I’ve told this story before here because that was the moment Autism became real for my family. In my original telling of this story I didn’t mention that everything became all the more real when Caleb had a straight up meltdown in that Audiology waiting room when I was checking out that left me squatting on the floor with him writhing on one hip while I pressed medical forms against a baseboard in an effort to put the pen to paper to try and sign some semblance of my name.

I cried on the way home. I first thought Autism 6 months before that appointment. I fought hard telling friends, families, and colleagues that I knew that is what it was and having everyone tell me I was probably over reacting. I didn’t know it would be so devastating the moment someone agreed with me.

I find that one of the most damaging things you can say to a parent of a child with Autism is anything in the category of “Are you sure?”. In the beginning…when things are still fresh….when they are raw….we will cling to anything you give us. Because acceptance doesn’t happen immediately. You have to grieve before you can accept. And I needed a good year before I started declaring to the world “Take that, Autism, you <insert string of expletives here>!”. So, when we’re still grieving, and you say to us “I don’t see it”, we’re going to try to not see it too. But that doesn’t mean it isn’t there. If you give a mouse a cookie, the mama mouse is going to desperately try to not believe her child has Autism. And then stress eat the cookie.

So, at 8:30 am on a Monday morning in Greensboro, NC, Autism straight up punched me in the throat. I couldn’t talk. I couldn’t breathe. I couldn’t swallow. Autism came at me and came at me hard. And it took a loooonnnngggg time for me to stop resenting the little Autism monkey that has taken up residence on my shoulder.

What has been advantageous though, is that in flight or fight situations, I always fight.

And I hope that is a trait I’ve passed onto Caleb because we still have a long ways to go.


Love and Autism,




Always Do the Hard Things

Caleb has a lot of needs. But he also does a lot of things FREAKING AWESOME. There are aspects of Autism we don’t live. Caleb does not have severe sensory integration deficits. He eats well. And he only eats edible things. His behavior is totally redirectable. His play skills are amazing. I can take him lots of places. On the contrary, he does not have many words. And he has even less friends than he has words. There are good things but there are also hard things.

I feel…I hope….that a lot of the things Caleb is doing well in the world right now are because we made hard decisions when he wasn’t doing as well that are ultimately, paying off. When he was 2 and a half, we took all the furniture out of one room of our house and replaced it with an outdoor plastic play set. Mini rock wall, ladder, slide….because it was winter and we needed an easier way to drop everything every 90-120 minutes to stay on a sensory diet. And because I hadn’t had chairs in my dining room for over a year because his heavy work seeking tendencies meant he pushed them all through the house and scratched the floors. I wanted him to get sensory input. Functionally. Pushing a heavy oak chair down the hall and back would crush his barely-able-to-walk sister. Everything in the china cabinet came down so we could put a trampoline in the living room. 80 year old place settings and Tiffany wine glasses were replaced with baskets of Playdoh, bottles of bubbles, and velcro picture strips. We did not need pretty things. We needed functional things. The play set moved outside but I still have crayons instead of wine carafes in my china cabinet. (Cause let’s be honest, I don’t need to waste an extra step by using a carafe).

I made a decision early on….even before I knew we were lifelong hosts to Autism….that we weren’t going to play tablet games. (This was a personal decision only. It is not a judgement, it is not an official stance, it is not anything other than a description of how we roll around here). After I found out though, that Autism was pulling up an uninvited chair to dinner, I COMMITTED to the no iPads, Kindles, Fires, whatever decision. That was a hard thing. Do you know how many thousands of stickers we’ve gone through while waiting for food in public instead of playing a game online? Do you know how many packs of bugs I’ve bought at the Dollar Tree to open up in Dr. waiting rooms instead of putting the kindle on the charger? I likely could have avoided a lot of meltdowns. Maybe I wouldn’t have had to leave abandoned carts in countless stores. Maybe I wouldn’t have almost died from embarrassment at the ENT, the Urgent Care, the audiologist, etc. This feels sanctimonious but I truly don’t mean for it to be…..I just wanted him to play. It is difficult going multiple and consecutive birthdays and holidays and watching your child stim instead of play with the toys people loved him enough to get him. So, if it required wifi, it wasn’t allowed. We played blocks, ball, cars, Potato Head, sensory bins, everything else. And eventually, his play skills were typically developing. He has imagination, he has innovation, he pretends, he engages in dramatic play setups……one of my favorite things to do is sit and watch him play because there was a time when it took massive amounts of hand over hand to stack 3 blocks. Now I’m picking him out Lego sets. He has zero interest in someone’s phone and all the interest in the world in someone’s ability to race monster trucks with him. But it took a year and half of hours on the floor with Little People instead of hours beside me on the couch with an iPad. I’m 100% supportive if your house uses devices. I’m not anti-electronics. In fact, I’m 100% certain Caleb learned his ABC’s from Youtube. But I give you this insight to paint a picture of how truly nonexistent our play skills used to be versus now, where Caleb’s interests are 100% appropriate for his chronological age. This means so much to me because I can not have a conversation with my son via traditional means. Even with AAC, he’s not yet able to tell me about his day or how he is feeling…..but we can play together.

I take Caleb a lot of places. You probably see pictures here, on my personal Facebook, on Instagram, etc. And you see the smiles and successes. I don’t post that at Touch-a-Truck we had a meltdown about getting off the ambulance that resulted in my ponytail being pulled out. Or that last time we went to Fenderz we had to walk laps around the building until the food was ready. Or that at the Transportation Museum a little kid blew hateful raspberries at Caleb because he yanked train tracks out of his hands. Or that no matter the museum, zoo, festival, or fair we go to…and no matter how OVERALL well he does at these places, there is ALWAYS at least one instance of him being the loudest kid up in the joint for at least a hot second. But we go. Every Saturday, we go. And we stay. We may bail on carts of Christmas lights at Lowes, but we always stay at these events. And whatever rough patch we have, it’s always overshadowed by something amazing that he did that day. Like when we finally stopped yelling whenever he had to get off of a truck and move on to the next one. Or learning that the fries at Fenderz are most certainly worth the wait. Or getting over our run-in with the kid about train tracks and making it to the rail yard to climb actual trains. And if he doesn’t get out and experience things, how will we know what to foster in him? I’ve spoken before of his love for aviaries. If I had to have put $ on it before our first trip to the zoo, I would have assumed he would hate them. Now we’re building one on the property. My favorite Temple Grandin quote is this:

“Kids have to be exposed to different things to develop. A child’s not going to find out he likes to play a musical instrument if you never expose him to it.”

Thanks, Temple. You’re why we have a keyboard, a guitar, drums, and a harmonica upstairs, soul sister.

It would be easy to care more about home decorating than making my home a sensory friendly environment. It would be easier to buy apps than action figures. I would love nothing more than to spend Saturdays on the couch in pajamas. But if we don’t go anywhere, we’ll never get where we want to be. Literally and figuratively.

So, if you ever wanna road trip to a children’s/science/transportation/history museum with me at the crack of dawn on a Saturday, throw on your best yoga pants and grab a large coffee for the both of us and I’ll meet you there. I’ll bring the sticker books 😉

Love and Autism,