Whenever someone accomplishes something out of the ordinary or if they anticipate something good or bad.. human nature is to ask this infamous question: “How did you know?”
The times I’ve been asked these questions were major points in my life or someone else’s.
After I became a Physician Assistant I was asked, how did you know you wanted to be a PA? How did you know you wanted to go into healthcare?
When I met mark and we got engaged. How did you know he was the one?
When I found my wedding dress. How did you know this was the one for you?
When I haphazardly brought a large bottle of Tito’s vodka to my friend’s house for her birthday and I called her out on being pregnant, she asked me, “How did you know?”
Up until 2022 I only recall this question being asked of me for something positive but looking at it now, it was during times of an extreme change in my life. Getting engaged, getting married, and a dear friend of mine bringing a new life into this world.
Now I am met with the question pretty regularly, “How did you know?” for both of my children who carry the diagnosis of Autism Spectrum Disorder. I guess mostly because they are so young. How did I know? It’s interesting because the answer to this profound question for Tony is wildly different than the one I have for Ethan.
I never really knew with Tony. When Tony was born, I had a major challenge with connecting with him. During those first few months, people would ask me.. isn’t it the most amazing love you have ever known? Isn’t it beautiful how you could love someone more than you ever thought was possible? I never felt that. And it’s interesting because while I was pregnant I felt it. I felt his soul being created within mine. I felt the connection. I felt like I knew his personality to the tee. It was like our little world, me and my littlest love. I was excited and terrified for the future to come, which was a common feeling. I felt like I was in the club of expecting mothers. I was able to chat with other parents about what I was experiencing in that moment, and the future of what was to come.
When he was born it all changed.
I remember being on the maternity floor and just itching to go home, to go back to my old life. I just didn’t want to do it. I had horrible visions of him choking in his sleep, being wrapped too tight, accidentally dropping him, him flipping and falling out of the hospital bassinet. It was the scariest first 2 nights in my life being in the maternity ward. I remember the nurse helping me place him in his infant carseat and sobbing uncontrollably, terrified of the coming minutes, hours, days, years.. I wanted to escape. The following months were darker than anything I’ve ever known. I wanted to know my son like I did when he was in the womb. How did that change so drastically? But more importantly now looking back, how did I not know something was wrong?
Soon after as the covid pandemic was starting to become more normalized and eventually lifted, I was known by my friends as a helicopter mom, an overbearing mom, a fearful mom. But this wasn’t me. It wasn’t how I ever was with anything. I’m far from a Type A personality, but I felt completely out of sorts at all times with Tony during his first year of life. Slowly my husband and I started to notice at all of his well visits with the pediatrician we were answering no to some, most, and then all of the developmental milestone questions. He was gagging with solid foods, not responding to his name, having more and more intense tantrums that ended after what felt like an eternity with him falling into a deep sleep.
I never knew anything was wrong, but on some level I guess I did..
When my friend (who I called out was pregnant in my 4th how did you know question), had her son’s 2nd birthday, I brought Tony. Just me and him, at our good friend and neighbor’s birthday party at Jenkinson’s Boardwalk and amusement park. It was a hot day, he was getting over his 2nd ear infection. Tony was 22 months old. He was restless and cranky. I attributed it to the ear infection. He didn’t eat, I attributed that to not being able to cut his food due to there being no utensils (it was a beach party, and pizza shouldn’t need utensils). Then it came time for cake. Tony was obsessing over a bucket of sand. Just putting his hands in it and scratching the sand ever so systematically. And just wandering around, picking up pebbles from the ground.
Then it was time to go to the amusement park. I’m waiting on line with him for a little ride I really thought he would love. He started to get upset after waiting for just a few seconds. He kept running away. I would grab him and show him the fun that we were about to have on this adorable little ride that so many other kids Tony’s age were enjoying, laughing, smiling, asking to go again. It was like he didn’t even see what I was showing him. Then Tony bolted. I ran after him. For 22 months it was hard to keep up with him. Then he stopped because he found a garbage pail that had old dried up gum on it. He kept trying to peel it off. No matter how many times I said no, distracted him, even moved the benches to prevent him from being able to get close to the pail, he was stubborn to pick that gum off. We were in this circle of actions for 20 minutes. Then he started screaming and banging his head on the bench. I lost my patience and said it was time to go. I picked him up. He was screaming and flailing, I remember carrying him like a football and pushing thru a crowd of people who were all going the opposite way of me. As I was seeing friends from the party we were at, I said “Please tell them I had to leave I’m so sorry we have to leave early!” While trying to make sure Tony doesn’t hurt himself.
When I got to the car he was arching his back, stiff as a board, hyperventilating, I was crying. I called my husband I had no idea what to do. I couldn’t calm him down. His blankie, favorite snacks, even movies, shows, anything he loved, I tried. With no success. I was defeated. How could I not know my son this much to the point that he is almost hurting himself because I was unable to comfort him? But also.. why this tantrum? What happened? Why was he so distraught about not being able to pick at gum on a garbage pail when we were at an amusement park?
I still didn’t know.
Soon after, Tony entered the 2 yr old program at his daycare and I kept getting phone calls that he was eating toys, not following any part of the routine, playing by himself, obsessing over certain toys. It came to a point I had to take him out of the daycare he was in since he was 8 months old because it was becoming dangerous there. They for some reason weren’t able to handle him anymore. I then, to the disapproval of our pediatrician at that time, got him evaluated. I kept being told, he’s a pandemic baby, it’s ok for him to be delayed. But I did it anyway. 3 weeks later we received the diagnosis. So I really never knew, but to be honest, I also never felt like anything was right.
Ethan was a little more straightforward, though mindblowing when I look back. When he was born I felt connected to him. I felt like I knew him, but he had a bit of mystery to him. I knew how to comfort him though. His feedings were ok, he would dribble his milk sometimes when I was feeding him, and struggled with sleeping thru the night, but other than that he was great. He was a baby. I was excited for the future ahead of having a baby. We’d go to mommy and me classes, I’d take him to the park and feed the ducks, we can do things together. Me and my little buddy. I started taking him to the library for story time. He loved it and was definitely the more rambunctious of the group. I didn’t mind though. Let him be himself! Let him explore!
Then one day, I knew.
At the end of story time, the teacher would empty a few bins of toys in the middle of the circle and she’d blow bubbles and play some music. It was adorable. All the kids would crawl to the toys and start playing. On this particular day, Ethan was 8 months old. He beelined to a truck, sat up, put the truck in his lap, flipped it over, and started spinning the wheels. I remember being a few feet away and not hearing or seeing anything other than his little thumb spinning the wheel and him staring at it. The next day I called for an evaluation. It took several months, but soon after we started early intervention and now he is a little over 2 and I’m grateful I knew when I did. I can’t imagine where he would be had I not known and done something as urgently as I did when he was 8 months old.
It took a lot out of me to get to the headspace I’m in these days. And I hope I continue on the positive track, of course with the rainy days continuing to be sprinkled in. But, now I know who my kids are, I know what they enjoy, I know what they don’t like. I really feel like I know them. Finally. And it is absolutely beautiful.
