My sensory story: part 2
The night things changed
Halloween 2019 was very, very wet. It rained all day and all night, but the forecast said there would be a break between 4-8 ish which by Halloween standards, was perfect. My kids were recently 3 and 18 months old, and we decided that instead of neighborhood trick or treating where they’d probably run to 3 houses and then get bored, we’d go trick or treating at the zoo. That way we could also see the animals.
As we were wrapping up, it started POURING. We sprinted to the car, but we still ended up getting pretty wet. Kids all over the zoo were running and dancing in the rain and jumping in puddles. Halloween joy was everywhere, so it seemed, except in my stroller and my car. (I know this is not true, and I know so many other kids were struggling without their parents knowing why, but that’s how it feels when your kid is melting down and you’re surrounded by fun.)
My son had always had some clothing sensitivities. He never wanted to sleep unless he was in long sleeves and long pants. He always wanted to be changed immediately if his clothing got wet or after swimming. He never wanted to jump in puddles, play in mud, play with slime, or any of those typical sensory experiences most toddlers love. Don’t even look at him with oobleck in your presence.
So that Halloween, when we got in the car, he was completely melting down. He needed all of his clothing off immediately, but he also hated the feel of his carseat straps on his naked body. We (amateurs apparently) did not have a change of clothes, so I tried to give him my tank top and my husband tried to give him a shirt. All of that was too big and uncomfortable. Eventually we just strapped him in screaming and got home as quickly as possible.
This was not the first time something like this had happened, and it sure as hell wasn’t the last. But it’s the first time that I specifically remember saying to my husband “this isn’t normal toddler behavior. Somethings wrong and it seems like he may have some kind of sensory issue.”
Admittedly, I didn’t really know what that meant. I just sort of thought he was sensitive to certain textures and that he’d grow out of it or we’d avoid things like wet clothing. But it turns out it was so much more than that. I also had no idea where to turn if he did need support, and I really had no idea what occupational therapy meant or what it was for.
A few weeks later, I enrolled him in his first soccer class for 3-5 year olds. It was a small class and it was supposed to be a drop off class, but he wouldn’t let me leave. There was another mom there who also wasn’t able to leave, so we chatted a lot about our kids’s excessive separation anxiety. I told her this was his very first “activity”, and started to talk about some of his sensory stuff. Her son was 5, and she told me that he and her older son both had sensory processing disorder and that a lot of my son’s behaviors and what I was describing to her felt similar to what she saw in her own kids.
The first evaluation
She gave me the information for the OT clinic that her kids went to, and I immediately scheduled an evaluation.
It was sort of a roller coaster from there. He was diagnosed with some sensory integration issues and started OT twice a week in January 2020, but slowly the waiting room started to be emptied of its toys, sessions were spread out more so no one was in the waiting room at the same time, and eventually, Covid canceled the sessions entirely. He was only there for about 2 months.
The next few months were a blur of being pregnant and home with two toddlers. Eventually, the world opened back up and I got him re evaluated at a new clinic because I didn’t like the way the previous clinic handled things (they were incredibly pushy about participating in virtual therapy even though I KNEW that wasn't the right move for him, and it felt like it was about the money and not the therapy).
You can read about that evaluation here, but once we moved to the new clinic my eyes really opened to not only the therapeutic process and my child’s needs, but also to all of the signs leading up to the evaluations that I missed, but in retrospect were my child telling me something was up.
I’m going to share a lot of this below, but quick disclaimer: SO many of these are normal behaviors. If you see something on this list that looks like your child, that doesn’t mean they need to be evaluated for developmental issues. For us, it was the pileup of all of these things combined with the impact it had on our lives and his. I’m going to share this to the best of my ability in chronological order to show how young he really was when these things started cropping up.
Some early signs of what we believed up until recently was Sensory Processing Disorder:
His witching hour as a newborn was loud and overwhelming. Fortunately, it was early in the night as he loves an early bedtime like his mama, but for a few hours every evening NOTHING would calm him down except a bath.
Note: I’ve since learned that it’s common for sensory kids to find the bath incredibly calming OR for them to hate the bath. This can also be mood dependent, but in general, my guy still loves the bath and it calms him before bed.
He did not like to be passed around as an infant. At his baby naming (he was 6 weeks old) we kept him in a swing with a sign on it asking guests to please not touch him or pick him up because it overwhelmed him.
I know we’ve all been in that baby phase where we know he needs a nap but we can’t get him down. Holding him and rocking him DID. NOT. WORK. He had to either be in the swing on the absolute highest/fastest setting sometimes with a little extra push from us, or strapped to my body while I literally did a dance cardio workout in the pitch black with white noise on. I wish there were some videos of me jumping with him, but alas it was too dark.
Speaking of cardio, I took a fit for mom stroller workout class when he was small. Looking back, if I knew what to look for this would’ve been my first sign that something was different about this baby boy because it was the first time I was really seeing how other babies interact with the environment (I don’t like to compare, but it helps to notice). ALL, and I mean ALL of the other babies stayed in their strollers. They sometimes needed a pacifier or a toy or some reassurance from mom, but they were easy to calm as the stroller moved during the running portions or they were engaged while the instructor was singing or reading to them during a weight break. My guy though, not so much. He demanded out of the stroller or we had to go home. So I did my workouts with an extra 17 pound weight attached to my chest for squats, running, pushups, etc. That’s right, he was in the baby carrier. He needed my touch.
He had a VISCERAL reaction to teething. I mean for every tooth he woke up the minute the tylenol or motrin wore off needing more. I struggle to share this because as a sleep consultant, I know many people often assume teething is the root cause of sleep issues when it really can’t be fully blamed. But looking back, I know that this was the case for us because he was getting a tooth every time it happened, he continued to be an independent sleeper, and he always went right back to sleep when he got his meds. Sleep wasn’t a pervasive issue. Teeth were.
When he was 6 months old, we left him with a non-family babysitter at bedtime. Someone he had never met until that night. He was fully sleep trained. We sang rockabye baby and read goodnight moon and put him down, and he was asleep within minutes every night never waking until morning. That night, he would NOT go to sleep. He spent hours screaming for this poor babysitter who was trying her best to calm him. Like I said, many of the signs are normal as is this, but I pinpoint this moment as being the beginning for me. The beginning of his sleep anxiety. The moment I started to see how truly sensitive he was to his environment. Probably, honestly, the moment that led me down this path to becoming a sleep consultant. When he was 9 months old, he spent the night at his grandparents house and the same thing happened. Endless screaming, very hard to get down at bedtime, naps were totally out of the question, even in a place he knew with a person he loved.
This sensitivity to the sleep environment continued on for years (and although better, is still ongoing). Any time we slept somewhere other than our home he wouldn’t nap in his crib at all. Nothing could keep him in there so all naps were on the go (car/stroller/carrier). And bedtime, which was always a breeze at home (we had some nap struggles through the years but rarely bedtime) became world war 3. He had to be held/rocked/rubbed/etc. And would not fall asleep independently.
When he was about 8 months old, we received some toys as a gift that played some songs, had some buttons, and had some lights. You know, the type of toy that would mesmerize an 8 month old at first glance. When he pushed it away and started shaking and screaming, I thought “aw how cute! He’s scared!” and I put it away for when he was older. I really thought he was just scared of the toys. This was sort of the same situation with any light up/loud toys. Looking back and knowing what I know now, I believe his nervous system was completely overwhelmed by the lights and sounds.
When he was 10 months old, I started to see signs of his attachment to me coming out in social situations. I took him to a music class every week for over a year. And he did not leave my lap once in all that time. All of the other kids were up singing, dancing, running around the room, playing. He just sat and stared at the teacher seemingly taking it all in. As soon as we left he’d hop into the stroller and sing all of the songs the whole ride home, but in that room he was immobile on my lap. He did the same thing at Circle Time at MyGym - never getting off my lap, not participating in any staff run activities, and only climbing and swinging independently (AKA with me right by his side).
He couldn’t be left alone for a second. We lived in an apartment in Baltimore and had a pretty big playpen in the living room that we’d only put him in to run to the kitchen or bathroom, both of which were within his line of sight because, apartment living. The second we turned a corner or closed a door, the screaming and shaking of the playpen began. It did not stop until you were within sight again and more likely inside the playpen with him. This is still the case at 7 years old. He can play independently, but he cannot play alone. He will not go to our playroom or basement without a parent or sibling or someone to be there with him whether or not he is playing with you or doing his own thing.
When he became a toddler who could crawl, he started spinning. We thought it was a cute motor development thing, but as he got older we noticed he did this same spinning motion on his knees whenever he was overwhelmed. To this day, spinning of any kind calms him and he can spin for HOURS at very high speeds without getting dizzy.
After his sister was born, we’d start to do some of the bedtime routine in her room. After bath, we’d all read books together, then we’d divide and conquer with one of us putting each kid to bed. When it was time to go into his room, his legs seemingly stopped working. He would only move through rooms by sliding along the floor like a worm or rolling.
And then finally, I noticed some very intense reactions to wet clothing (hello Halloween 2019). As mentioned above, this was when I realized it was time to look further into this. The first 11 points were things I saw after the fact, not things that clued me into anything at the time. But the way he reacted to his clothing getting wet signaled that something sensory was going on. And it wasn’t just very wet clothing like that final straw on Halloween. It was a drop of water on a shirt or pants that led him to an outfit change. It was noticing that other people didn’t have to change their kids into a dry bathing suit immediately after getting out of the pool. It was the way his sleep was disrupted if he leaked through a diaper. Any amount of wet was a problem, and I knew that the degree to which this was true was above normal range. But it was also the way clothing felt in general and the fact that he wouldn’t sleep unless he was wearing long sleeves and pants. And the refusal to change his clothing based on the season - the transition from pants to shorts was brutal, and vice versa.
These were the signs. But this wasn’t and isn’t the end. This began years of evaluations in multiple different clinics leading to multiple different therapies, tons of gaslighting, his IEP process which I shared about on Instagram (there’s a highlight), and now my current line of thinking which is that we were missing a huge piece of this puzzle until now. Despite the sensory processing diagnosis, and despite the ADHD diagnosis, and especially despite the resounding “No way your child has Autism” from a developmental pediatrician specializing in Autism, I now believe more than anything I’ve ever believed before that my child does have Autism. Specifically, I believe he has Pathological Demand Avoidance (PDA), which is a particular profile of Autism that doesn’t present as typical Autism at all.
Are you interested in more? Do you want to know about the evaluations and therapies? Should I write more about the IEP process? Do you want to know my thoughts on this PDA self diagnosis and what I’ll be doing about it? Let me know and I can write a part 3 or even 4!