Part 4 of 4: Our Story with SPD
Here we are, the finale to the 4 part series of our story. If you’re just joining us, I highly recommend going back to the first 3 episodes to find out the early part of our SPD journey. The last episode got pretty emotional, so you’ve been warned.
In this last episode, I’ll catch you up to where we are today, and talk about how we have been surviving the pandemic but she’s been THRIVING in pre-k.
So at the beginning of the pandemic, she actually did really well. Well… there are some details that I skipped over because this would turn into like a 6 or 7 part series. But basically, we moved in to my mom’s house temporarily (which was like a vacation for us because we finally had help with her AND she just had a whole new environment, more space at my parents house… all the attention, and we NEVER had to deal with overstimulating environments at school or the store… we were literally in our little bubble.
She did great those first 2 or so months of the pandemic. Then, the honeymoon was over and she started back up with throwing huge meltdowns and getting back to her “usual”. When we eventually moved into our own space, out of my parents’ house it just started a cycle of ups and downs from there and for the rest of the pandemic until school started. For reference this was when she just turned 3.
It did feel like we were in a better place for sure than 6 months before when she was having daily 90 minute meltdowns. But she definitely was still having meltdowns, just less often. It felt like we’d have 1 really good week out of a month and then the other 3 weeks were like a mix of “not terrible” to “SOS help me now” , all magnified and aggravated by quarantine/lockdown.
This was when I started making the shift from using the play therapist for Liliana to now having the play therapist work with me for my own anxiety and more parenting tips vs. direct service for Liliana (it was all virtual by the way).
I started using visual schedules to give us some structure in our endless isolation. I wasn’t working in the clinic at this time, I was home, working on my business and being Liliana’s primary caregiver while my husband worked from home. We were having maybe 1 extreme, bad meltdown a month (nowhere near where we used to be), but she was still such a hair trigger for very huge emotional reactions. The isolation and staying home was literally driving me insane and I was becoming more grumpy by the day. I had less patience with her, I wasn’t enjoying spending time with her… and she could tell. It got rough.
Finally, my therapist suggested that I put her in preschool if I felt comfortable from a Covid stand point. I gave it some thought and realized she was right. By May 2021, she had her first day of preschool!
You guys… I literally cannot even tell you HOW MUCH I NEEDED THIS. She started as 2 days/week and now is up to 3 days a week and it’s honestly the most refreshing thing I’ve ever experienced.
YES there was a transition period with some tough drop offs and meltdowns at pick up… but it was not as bad as I would have guessed it would have gone based on our experience with her thus far. She got over that transition period quickly and now… she’s LOVING school.
She has a group of friends that adore her and she comes home telling me so many stories about what they play and talk about; she has completely wowed me with her participation in loud activities and messy play at school… she eats lunch at the same table as other kids (for her first month she asked the teacher if she could sit by herself because it was so loud and she didn’t want to sit next to others).
I will say… most days at pick up there’s a period of like 20 minutes after school where she can kind of be on edge just from being at school all day with all the demands, waiting, playing, talking, listening ….. But I haven’t really had too many true quote “after school meltdowns” that I coach my own clients through all the time, I definitely was holding my breath for that. It just seems like overall, the school I chose for her and the environment and people in it seem to be pretty regulating for her. If you want me to do an episode on how I did choose her preschool, let me know- find me on instagram, send me a DM!
We’ve just come SUCH a long way in her emotional regulation, in my parenting skills (and my husbands- have to give him a plug here for getting on board team- positive parenting and really picking up on the language and shifts I’ve been trying to make with her. She’s still a fiery, sassy girl with a small sensory cup, but she has way better emotional regulation skills and she is seriously impressive when it comes to expressing her emotions and reflecting on them. I’m so proud of that work we’ve done.
Well, that catches you up to where we are today. Thanks for joining the 4 part series as a kick off to the first season of my podcast! Keep joining me weekly where I’ll drop new episodes with lots of sensory development education, insights, mom-hood vulnerabilities and everything in between.
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 its 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.
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More SPD parent resources: www.sensorywisesolutions.com