“Liliana is a firecracker. She’s a sassy, extremely intelligent, loud, charismatic girl with a very big personality and very big emotions. She also has SPD (Sensory Processing Disorder) and some anxiety. I’m her mom, a pediatric occupational therapist who knows a whole lot about SPD but still had to jump through hoops and deal with doubt and judgment from others when it came to advocating for her. This is our story.
It took me a while to make mom friends. During Liliana’s infancy, she was a terrible sleeper and was so fussy, all the time. I was terrified to leave the house. The few times I did leave, I always regretted it because she was crying the entire time, no matter where I went. I missed out on early mom groups I was invited to. By the time she was 18 months, I was desperate for some adult interaction. I needed a social life back. Raising a toddler at home and working with kids at work left almost no time for actual grown-up talk. I made an effort to be friendly with some moms I met at a local drop-in playgroup.
I was so happy to have found some moms my age, with kids my daughter’s age, who I got along with, AND our schedules overlapped. The stars aligned, and I was desperate for some socialization. When we went to this play space, it always started the same. I’d put our stuff down at the parents’ table and walk Liliana over to the kid’s space, just about 15-20 feet away, with a clear shot of the parents’ table. I could literally whisper her name and she could hear me. There were only about eight people in the room at a time, and it was usually with other friends or acquaintances she already knew. It was not one of those super overstimulating, loud, and bright play spaces. This was like a cozy little library/preschool classroom, open to local parents. Quiet, cozy. Tons of fun to play with toys with familiar faces.
Liliana still couldn’t handle it. Nine times out of ten when we’d go, I’d end up playing with her and squeezing my adult-sized butt into tiny kid chairs, because she refused to play alone with the other kids. I’d glance over at the parents’ table, watching my mom friends chat, laugh, gossip with their still-hot coffees in their hands. Some days, she’d have complete meltdowns in the middle of the room, which usually ended up with me leaving early.
Between having to manage her emotions at playdates, leaving playdates early, or not even making it out the door because of a meltdown, I was feeling isolated. All my friends either didn’t have kids or had ‘unicorn’ babies, as I like to call them. The ones who could get away with serving their child apple wedges instead of apple cubes without a 30-minute meltdown. On top of feeling isolated, I was feeling guilt and resentment towards my child, who was making me feel nothing but exhaustion and misery some days.
But the worst feeling, even more than the feelings of isolation and resentment, was the feeling I was ‘making it up.’ Friends, family members, and even professionals I consulted couldn’t see what I was seeing. Some days, I felt like being an OT was a handicap and made me somehow less credible to assess my own daughter’s sensory behaviors. People who knew me knew I do tend to worry a lot, so I was probably just making a big deal out of normal toddler stuff. ‘You know too much’ is what was often said to me. Yes, I know a lot. But I can’t know what I know and NOT do anything about it.
I work with clients who come to me and say they noticed signs of SPD early on, but no one told them about SPD or their doctor told them it was nothing to worry about. They missed valuable opportunities for early intervention because someone didn’t take their concerns seriously enough to refer them to OT. I couldn’t let this happen. I knew from an early age (10 months) Liliana had signs of SPD. But even I knew there was a chance this was the ‘worried Laura’ speaking, and it wasn’t actually something to be concerned about.
When I saw more and more signs pop up consistently and across environments, I started keeping a closer eye on it. Then, when she started having 90-minute long meltdowns two to three times a day, every day, I KNEW this wasn’t typical toddler behavior. But even then, when I would bring this up at pediatrician appointments or talk to other professionals about it, they would brush it off.
‘I’m getting concerned because she’s having some huge meltdowns. She hates when I sit in the wrong spot and gets extremely upset when something spills. She also can’t tolerate when her clothes get wet, it’s a huge meltdown right away.’
‘Welcome to toddlerhood,’ my pediatrician said.
‘Do you think we should get a referral to occupational therapy or a psychologist? Her meltdowns are lasting really long.’
‘You probably already know just how to handle it at home. I think you can keep doing what you’re doing and she’ll be fine.’
These kinds of conversations happened over and over.
When I look back to my camera roll from October to December (when her daily meltdowns were at their peak), I barely see any photos of her not involving tears or evidence of her bitten hand or bump from banging her head. I used to photograph evidence to show proof to people who didn’t believe the intensity of her meltdowns. I remember passing by photos in the house with pictures of us from months before and instead of smiling, I’d cry because I missed seeing her happy.
I remember one time I saw a family eating frozen yogurt together outside. They were laughing, talking, the kids were happily eating their yogurt, even as it was melting. I vividly remember the feeling of jealousy. I was jealous this family was able to be so purely happy. They could enjoy each other’s company, like we were supposed to be doing. We were locked in the house because her meltdowns didn’t let us get past the breakfast table.
There was one week where we were on day eight of daily, 90-minute long meltdowns. She would bang her head on the walls or the ground and bite her hand and fingers until she broke the skin. She’d pee in her pants (she was fully potty-trained) and lose her voice from screaming and crying so long. I was certain there was something medically wrong with her. Maybe she banged her head so hard on the wall she gave herself a concussion. Maybe she’s dehydrated because she’s been crying so much. I took her to the ER. ‘There has to be something wrong with her,’ I thought. ‘This is not normal.’
She was slightly dehydrated, but they couldn’t find any other cause for concern. Before discharging us, as I was sitting in the bed with Liliana, a team of doctors came into the room. I thought they were going to tell us about a test they needed to do for her or some other helpful information. At this point, we have yet to talk about anything in relation to her extreme meltdowns and what’s been happening at home.
Instead, they stood around us and started talking to me about my mental health. They thought I needed more self-care. They suggested my husband and I pay for a nanny or a house cleaner to take some of the burdens off of us. What? Were they insinuating I was making up or exaggerating my daughter’s SPD because we were working too hard? I was furious. I was embarrassed. I was hurt. At the time, I couldn’t formulate much to even say anything, except cry. But this day changed me. I realized how much of an uphill battle I was fighting.
This is when I took things into my own hands and worked with my daughter at home on her emotional regulation skills and sensory processing skills. I started documenting our journey on social media with the intent of educating others on how to implement sensory strategies and sensory therapy at home or in the clinic. What I didn’t expect to get out of it were the deep connections I made with other parents. I heard from parents who said my videos helped them learn about their child. I heard from parents who said they never knew what SPD was until seeing my post.
I heard from parents who said they were finally able to get an OT evaluation because my posts helped them communicate better with their pediatrician. I heard from parents who said they were so glad to hear they weren’t alone. My mission is to make sure parents know they’re not alone. I want parents to feel empowered in their ability to confidently support and advocate for their child who has SPD. I want parents to know they aren’t crazy. I want parents to feel heard, validated, and connected with a network of other parents who get it.”
This story was submitted to Love What Matters by Laura Petix of Orange County, Southern California. You can follow their journey on Facebook, their website, and Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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