Part 2 of 4: Our Story with SPD
Helloo! And welcome back to part 2 of mine and Liliana’s story with sensory and anxiety.
If you haven’t listened to part 1, the short story is- she was a tough baby, she didn’t sleep well, I had post partum anxiety, which led to mom rage, accidental sleep training and isolation. If you want to hear more details about it, head back to episode 1.
By the time Liliana was around 9 months, I remember noticing what little frustration tolerance this girl had.
I know… you’re probably like “Laura… she’s 9 months, what 9 month old has any frustration tolerance?”… well I mean when we would take her to a gymboree pop in class, I’d see lots of other kids try to stack cones or put the rings round a cone, they may not have gotten it at first but you’d see their chubby little hands grab and try again at least once or twice. When we did things like this with Liliana (well within her developmental abilities) if it didn’t work right away, she’d lose her mind. When she used a push toy, if it couldn’t turn just right, she’d just keep bumping it into the wall and start crying.
This frustration tolerance and big emotions continued and are still a huge issue for us to this day (like literally this morning she had a huge reaction to not being able to put her shoe on right), but they started to become a problem for us when we took her to a small in-home daycare when she was about 13 months. Everyday I would get texts and calls from the nanny detailing how bad her meltdowns were, and more often than not- I ended up having to pick up Liliana from the nanny’s house early (I had to cancel last minute on my OT clients…. it was soo disruptive. I’m actually still traumatized when I think back to those days.)
The level of intensity and length of her meltdowns started to increase at this time as well.
Throughout this time I always brought this up to my pediatrician. I would talk about her behavioral challenges and her emotions and always got told “it’s normal” and was always given some run of the mill parenting tips to try (as if I hadn’t already).
At 14 months, I had her evaluated by our local regional center… which is basically state-funded services (so it was free) but the first step is having a “play expert” come to the house and assess her- this was mostly questions she asked me and based off that, Liliana did not qualify for further assessment or services.
Finally, by August 2019, after Liliana’s 2nd birthday, I was adamant…. there must be something more to the picture. Her big emotions seemed more similar to the ones I see in my own clients at the clinic vs other kids I’ve seen at classes or through my personal circle. The feelings of isolation continued, even though I had met some very friendly Moms with kids L’s age, L seemed to stand out as the “hard one” and my anxiety about her meltdowns kept me from so many playdates.
I was persistent with my pediatrician to get a referral to a developmental pediatrician.
When I say persistent, I mean…. I had gone in to the doctor’s office about 3 times within a span of like 4 months only because of her extreme meltdowns. It wasn’t until I showed her video of Liliana’s meltdowns that she said “Okay… if it will make you feel better, let’s refer to a developmental pediatrician”.
For those of you listening who aren’t familiar with a developmental pediatrician, Developmental pediatricians are trained and experienced in identifying a range of developmental and behavioral differences. They can evaluate your child’s overall development, provide a diagnosis, and recommend specific treatment plans through the respective childhood experts. They basically triage your child based on what they find in the assessment. They can assess for Autism ADHD, anxiety, other developmental delays and tell you what professionals to see if needed.
A developmental pediatrician is typically the “first responder” when you have a child with some delays, behavioral challenges and you don’t know exactly which professional to work with. If you suspect Autism, ADHD, or just aren’t “sure”, developmental pediatricians are the best place to start.
So at this point when she just turned 2, I wasn’t sure if SPD was in the picture, Autism, Anxiety…. All of it? I really didn’t know. And I should say at the time, none of my family really totally “believed” me that there was something going on with her. There was a lot of “oh she’ll grow out of it” or “oh she’s just spirited”.
What I was seeing from a sensory standpoint was a lot of fear/avoidance and dislike for messy play and other tactile (touch) senses.
- She started getting picky about the way her socks felt
- She started complaining about having her wet hair brushed after the bath
- She would barely poke playdough with a finger and immediately wipe off her hand even if nothing got on it
- She would cry at the sight of things spilling (even if it was on TV) or even if it was across the room and didn’t actually touch her
- She would cry at blankets getting wrinkled or not “feeling right”
- The turning point for me with her sensory challenges was when I noticed it starting to impact her ability to participate at school. We were doing these 2 hour drop off preschool classes and I remember hearing another mom say “aren’t the crafts they bring home just so cute?” at that point we had been in the class for a few weeks now and I had yet to receive a craft. I asked the teacher, does she have any crafts to bring home? And he mentioned “no… Liliana does not like to participate in arts and crafts, she usually avoids it”
Emotional Regulation challenges as you know were the huge meltdowns, and she had this very (what seemed like) irrational fear of males. She would cry hysterically when certain family members would be in the room, even the gentlest, nicest ones (who always gave her the best presents!) she would just cry. This is also when I started noticing this odd fear or obsession with food. Not in a picky eater sense, but she would have these fits of rage when she’d be eating a bowl of strawberries or waffles off a plate and she would notice the amount dwindling and would insist on having more (even though the food was still plentiful for her). When she ate oatmeal or yogurt in a bowl, she’d start crying when she could start to see the bottom of the bowl, signaling it’s getting less.
This was also the time when she would start just waking up in terrible moods, dysregulated from the jump of the day, I had no chance to even get out in front of it to help her get regulated. I was miserable. We needed help.
So our developmental pediatrician appointment was set for October 31st. Halloween.That entire week I was incessant on making sure she was well fed, well rested, away from germs… I wanted her to be the most regulated on the day of her evaluation. I even made sure to pick the time that was first in the morning when she was usually the least fussy. I did everything on my part to set us all up for success, including the evaluating doctor.
Can you tell this is leading up to something??
So we get to the office, and we’re waiting in the patient room waiting to be seen. Liliana goes through all the normal heart rate/temperature/weight checks etc, already a bit on edge/anxious, but nothing major. She saw some nurses wearing mickey ears and princess hats for Halloween and was interested in that. We’re waiting… waiting…waiting…. Hear a knock knock at the door, and we say, come in!
In the absolute most dramatic entrance ever… the door slides (it was a sliding door made out of wood) open and there stands a 6 foot tall full iron man costume, including the head piece with lighting up eyes.
Liliana absolutely LOST IT.
Anxiety from doctors office, Check
Anxiety from male figure, Check
Anxiety from unexpected, never before seen robotic non human looking figure in front of her, CHECK.
I mean… she was hysterical for the full 40 minutes. Not one actual assessment was done other than parent report which consisted of him asking me questions and me trying to scream the answer over Liliana’s shrieks.
His report basically said that he couldn’t make a good assessment because she was “distraught and withdrawn” throughout the entire session.
You guys… I was LIVID. You could have seen smoke coming out of my ears.
LIke, dude, you had ONE job. Literally one job. To show up and assess my daughter WITHOUT scaring the living you know what out of her.
Yes, it was Halloween… but man, you work in a field where you are assessing children with potential anxiety disorders, Autism, other challenges, who are seeing you for the FIRST TIME. WHYY??
Okay anyway I can’t keep talking about it or I get too heated- this happened over 2 years ago and I’m still boiling.
The good news is- it was Iron Man who connected us with our play therapist who is still working with me (in a different capacity- which I’ll share in the next episode) today. We also did get SOME OT support, which I ended up pulling her out of after 2 visits- more on that in the next episode!
instagram: @TheOTButterfly / www.instagram.com/theotbutterfly
Work with me: www.theotbutterfly.com/parentconsult
More SPD parent resources: www.sensorywisesolutions.com