Part 3 of 4: Our Story with SPD
Welcome back! Okay, so this is part 3 to our sensory and anxiety journey. If you want the full details, make sure you go back and listen to episode 1 & 2. If you want the cliff’s notes version: Liliana was a fussy baby; I had post partum anxiety; she had huge emotional regulation challenges starting from 9 months, plus sensory avoidant behaviors that got more intense between 14 months and 2 years. Liliana was evaluated by Iron Man (again- see episode 2 for the juice behind that detail) and that’s where I left off.
In this episode I want to reflect on the time period between October 2019 and February 2020- some of the DARKEST times of my life as a parent to Liliana.
I feel like I should say trigger warning- but I don’t know exactly what the trigger is- I will just be talking a lot about how hard it was raising her in this time and how I cried and got stressed out a lot— so if you don’t want to hear that, you might skip this episode!
So the good thing to come out of that Iron man (hahah i’m sorry i can’t stop referring to him as that.- I’m talking about the developmental pediatrician) was that he identified that anxiety might be playing a role so he connected me with a play therapist.
A play therapist is usually a therapist with a mental health background. Ours is an LMFT which stands for Licenced Marriage and Family Therapist and she specializes in childhood anxiety, including young toddlers and preschoolers.
We worked with her for a bit and to this day I still work with her, but it’s actually for my OWN anxiety in the context of being a mom to a child with SPD and anxiety. I highly recommend play therapy if you suspect anxiety is part of the picture for your child.
More on that in another episode.
Aside from the play therapy, we also did get a referral for OT services. But when they evaluated her at the OT clinic, they did not recommend 1:1 services, but rather a social group therapy- which sounded like a good idea at the time.
The social group was hosted by an OT and an SLP (cool) and had 6 children in it. It was a drop off social group for 2 hours! Awesome! On the first day I noticed right away that Liliana wasn’t the best fit with the other kids in the group. Out of all 6 children, Liliana was the only non-seeker. AKA, she was a sensory avoider in a group of extremely loud, fast, movement seeking (and clumsy) kiddos. For 2 hours. In 1 room.
I gave it 2 sessions before deciding (and the OT ended up agreeing with me) that this was doing more harm than good for her overall regulation.
With all this going on… her meltdowns just continued to increase in: duration, intensity and frequency. I was not able to catch my breath. I was not able to get ahead of her dysregulation in the morning.
It got to a point where weeks and weeks went by with meltdowns. I would walk by one of those virtual picture frames in our house, and an old picture of her or us as a family would come up and I would feel really sad because it felt like she wasn’t this happy kid anymore, and we weren’t a happy family. I went through my camera roll at this time in our life and there were no pictures of us as a family, no pictures of her, because she was just always melting down.
I also remember being out at the store and in the community and I would pass by families having froyo together, a family of 3 that looked like us. They were enjoying their time together, laughing and I was angry and resentful because I felt like we couldn’t do that as a family.
She started banging her head during meltdowns and biting her finger or hand to the point it swoll up or drew blood. She started peeing in her pants every time she had a meltdown (after she was already potty trained).
One day after dealing with the 3rd meltdown of the day, I was in a panic. I was desperate. I looked at her and it hit me “there’s something wrong with you. Maybe you had a concussion. Maybe you’re dehydrated. There’s something medical going on, it HAS to be.” I took her to urgent care who then sent us to the E.R. where she was admitted for “tests” after I explained her behaviors and how she has been head banging.
Long story (kind of short)… after running tests and finding nothing but “mild dehydration” the medical staff on her team sat me down and had this extremely awkward and really degrading almost talk with me about how my daughter’s behaviors and my “quote sensory concerns” seem to be directly tied to my own stress and anxiety. They gave me suggestions like- hire a full time nanny, hire someone to do my groceries or cook for us… basically the message they were sending me was that everything was in my head and/or I was making the situation harder because of my inability to manage my own house duties.
Is your jaw open? Are you as shocked as I was when I processed that? Are you feeling offended FOR ME? Or maybe you’ve been where I was, too.
I hear from so many parents who got brushed off. Medical professionals telling them it was their parenting style that was causing the challenges.
Anyway… this was it. This was the turning point in my journey with Liliana. I had a wake up call. A call to action. I was the only person at that time who could support her the way she needed to be supported.
That’s when I started being more intentional about my play with her. I started thinking of myself as my own client- what home programs would I recommend? How could I better structure her day? I started using visual supports for her… so many of the tools I used at work but never thought to use with her. I really wanted her to work with someone else that wasn’t me… but at this time, I had no other OT support.
I first tackled messy play on it’s own while constantly finding ways to manage her overall regulation which contributed to the meltdowns. I also got some help from the play therapist at this time. I found ways to add deep breaths and calming activities throughout our routines.
It started to help! I felt like I could do this. It hasn’t been easy, but I am now (2 years later) seeing the fruits of my labor if you will. I’m seeing it all make a difference.
In the next episode, the final part to this 4 part series, I’ll detail how we’ve made it through the pandemic and how she’s doing today. Spoiler alert- she’s THRIVING.
instagram: @TheOTButterfly / www.instagram.com/theotbutterfly
Work with me: www.theotbutterfly.com/parentconsult
More SPD parent resources: www.sensorywisesolutions.com