Monday, June 30, 2014

Brusha, Brusha ...

I mentioned in the last post that Beatrice Kate is a sensory seeker. It's exactly what it sounds like. She seeks out opportunities to touch, taste, smell, lay on, bump into, chew on, press against, fidget with all kinds of things in her immediate environment. Basically, her brain tells her senses to constantly seek out opportunities to explore, even if she knows it's not a good idea (i.e., chewing a Barbie shoe or plastic cutlery).

So, here's the thing that's the most interesting about Sensory Processing Disorder... just because Bea is a seeker for most (like 90%) things, she is still experiences something called "tactile defensiveness" or, in normal-people terms, "My shirt doesn't feel right today" problems. Except for her, it's usually, her shoe/socks/shorts/shirt/hairbow/wind blowing/etc. And for an SPD kiddo, it can all become a bit overwhelming. When something just does. not. feel. "right". to Beatrice Kate, it basically overrides her brain and all she can think about is how annoying the tag in the back feels, or how itchy the seam in her sock is today. This overwhelms her nervous system throughout the day and essentially, she spends the entire day in a "Fight or Flight" response mode. This is the reason we were seeing such a drastic emotional reaction from BK (i.e., MAJOR tantrums) each afternoon on preschool days and why she requires pitch black and quiet time still. It's also one of the main reasons Bea is sometimes perceived as a "shy" kid, or a lone wolf. She can't predict how her peers will touch her, or what they'll do during activities, so she chooses to not engage to avoid touching them!

One of the ways we can help Beatrice Kate cope with tactile defensiveness is through a treatment known as the "Wilbarger Brushing Protocol". Basically, every two hours (when Bea's awake) for the next two weeks, we'll be running a soft brush over Bea's skin with firm pressure. Then we do a series a joint compressions on Bea's hands/fingers/toes/leg/arms/etc. It supposedly should help BK's sensitivity to touch, and help "reset" her nervous system before it has a chance to get into the Fight or Flight mode.

In theory, it sounds awesome. In practice it looked like this:
Casey brushing Bea's arms and legs in the parking lot of the Durham Farmer's Market, and yes. She's sitting on top of the cooler. Stay Classy.

And of course, I basically have the memory of a gold fish, so I had to set up a series of ridiculous alarms on my phone, and Casey's:

Two days in and Bea is a little hesitant still about allowing us to do it. She's also quick to say "that's not enough pressure" or "too much", so I feel like we're getting good feedback from her on our technique. Maybe a little too much feedback, actually...

I'll keep you updated on how it goes. I'm hopeful that it may help in some capacity, even if it only means we can put on shoes more than .25 seconds before leaving the house, or if we only have to try on 3 outfits each morning instead of nearly every dress in the closet. It's the small things, really.


Thursday, June 26, 2014

Seeking and Avoiding and then Seeking Again ...

I'm not sure really even where to begin this post. Actually, yes I do. But, we'll save that for later. For now let's start with this...

Last year, I was reading one of my favorite parenting/natural living blogs and I came across this post.

Specifically, blog author, Stephanie Cornais said this:

"She never wanted to hug anyone other than me and sometimes not even my husband.  She knew what to expect with me, a deep tight squeeze, which later I found out is very calming.  Turns out she is over-responsive to light touch and a light hug, or brushing up against Papa’s facial hair was too much to bear for her.   And the way she walks on her tip toes.  I just assumed it was because she was so obsessed with ballet, turns out walking on her tip toes sends more messages to her brain than walking flat footed and it feels more safe and secure for her to understand where her legs and body are in space as she moves.  Or that she can’t ride a bike or jump yet.  I remember when she was about 20 months old, I was watching her in dance class and she really struggled with jumping.  But her dance teacher told me that was normal for her age and that there was a wide window of normal of what age kids learn to jump with both feet."

Hmm. Okay. Wow. That sounds a lot like our daughter. So, I kept reading:

"But in that moment, I knew something was off, but I didn’t listen to my intuition.  I thought it was weird she would ride a bike for 30 seconds and then get off grumpy and frustrated, and do the same thing with kicking a ball or playing t-ball in the back yard-she wanted nothing to do with any of those physical, gross motor type things.  I remember having a conversation with my husband and we both just agreed she was just not into sports.  She liked ballet and she liked swimming.  Both active healthy things, so who were we to make her ride a bike and kick a ball? So we let it go. We noticed that she always asked us to stop talking if she had to concentrate on something like eating or making art... I thought that she refused to wear jeans and only wanted to wear dresses because she was a girly girl and it never occurred to me that she might over responsive to the sensation of the clothes on her skin."

After reading those words, I felt my heart begin to speed up a little. This was SO Bea. Everything, from the toe-walking to the need for quiet focus, even the delay in gross motor skills and insistence on wearing dresses was happening in our life too.

After that blog post, I knew. Actually, if we're being honest, I've known for the better part of two and a half years, maybe longer, that our daughter has Sensory Processing Disorder. It's just taken months, years really, to get anyone else (including Casey) see the connection between Bea's "quirks" and the disorder.

It's very, very easy to write off most, even all of the "symptoms" of SPD as "oh, she's a silly preschooler", or "oh, she's just shy" or, "oh, she's just picky". Only when it began to disrupt our daily lives, did we think "Okay so maybe this is outside of the path of normal".

Besides, we've dodged every. single. other. "bullet" of prematurity, so we never really expected anything to crop up now. For a moment, we let ourselves forget that prematurity is a life-long condition, and somehow forgot every OB, NICU doctor, nurse who repeatedly reminded us that preemies are at a higher risk for Developmental Delays than full-term babies. After all, Bea has been developing nearly on-track or ahead of most milestones parents keep track of, so there hasn't been any real reason to be worried.

Officially, it was diagnosed at Beatrice Kate's four year old well-check, which was with a new, different pediatrician than we've seen for every other visit in Bea's life. When she (the new pediatrician) began to ask about Bea's daily life, I offhandedly said, "Well, she's quirky, that's for sure".

And instead of laughing right along with me, the ped said, "Tell me more".

So I began to describe my "normal" four year old: "She's pretty introverted, doesn't really engage other kids in play unless she knows them well. We call her the "One Man Wolfpack" because she just sort of does her own thing. She loves to wear dresses or tights or leggings, but never jeans and never anything with a weird tag. And socks? Forget it. She has a short list of "acceptable" socks and shoes she'll agree to wear without protest. And, she's such a great eater! She eats the some of the most crazy things, though. The more potent, the better for this kiddo! Sauerkraut, pickles, brussel sprouts, balsamic vinegar, you name it- she'll eat it. She's not really napping anymore but she does like to have a quiet time in her room alone, in the dark. And even at night, she requires blackout shades and two noise machines to sleep! Yes, she's in preschool, but man does it wear her out. Her worst behaviors at home are on days she attends school. She loves to run around, and she does this crazy thing where she'll walk on her toes! She still puts things in her mouth, sometimes more than she did as a baby. Last week, she ate a napkin at a restaurant, and two weeks ago she chewed a bamboo fork! Isn't that crazy? Will she ever grow out of that?"

The pediatrician stopped me. "This seems a little more than just her being quirky. Honestly, it's sounding like sensory seeking behavior. Have you ever had her evaluated for Sensory Processing Disorder?"

The answer was no. No, because at her three year old visit, when I brought up the same stuff, I was told she'd grow out of it soon. That her gross-motor delays were genetic. Her parents aren't natural athletes, why would we expect our kid to be one? No, because when I called the CDSA to ask about an evaluation when she was two and a half, I was told she didn't need any additional services and she had aged-out of their programs anyway. No, because our kid was normal, right?

But knowing what we know now... it's pretty clear that Bea has been trying to cope in a world that's overwhelmed her from an early age. The noise machines, the pickiness about food textures, tags,dresses, the toe-walking... it. all. makes. sense. now.

We left that day with a referral for an evaluation from an Occupational Therapist, who confirmed what we already knew- Beatrice Kate has severe-to-moderate Sensory Processing Disorder. Since then, Casey and I have been diving head-first into intensive weekly OT appointments and modifications to our home environment and daily routine, all aimed at teaching Beatrice Kate methods to cope with day-to-day "invasions" to her nervous system, and learning ways that we, as her family, can support her as she grows.

I've been trying to think for the last few weeks about what to say publicly, here on this space, about Sensory Processing Disorder and our girl. SPD or not, Beatrice Kate is one of the smartest, funniest, kindest children I've ever met. Sometimes, I feel like I'm talking to an adult or an attorney, she's so brilliant at winning arguments! She's incredibly creative and musical, and frankly, gifted in a lot of areas. And I'm exited to see how her little (big) personality blossoms in the coming months and years, as we help her learn to modulate her reactions to the world around her.

So, I think I'll start blogging again, as a way to document our journey and our experiences. Really, I think this all still relates to our journey as a NICU Family. As we're learning, once a NICU Family, always one. It's sort-of a Part 2 to our story, if you will.