Wednesday, February 5, 2014

Touch and go, part 2

Last I wrote, we were struggling with clothes and headed to OT to help us learn how to manage Aria's sensory issues.  The good news is that we have since gone to her first official appointment.  The not so good news is that we have lost every single pair of pants along with a shirt she was willing to wear to the reject pile.  Okay, so that may be a bit dramatic considering I'm talking about 2 pairs of pants but when that consists of 98% of the kid's wardrobe it feels pretty dang dramatic.

So what is Aria willing to wear?  She is willing to wear a Gap sparkly layered skirt, her dad's small men's "bite me" Alaskan bear tee, and a pair of Hanna pants turned inside out to avoid the inseam (how silly is it that the pants are entirely flat locked seamed except the inseam?!). Those three articles of clothing make up her entire wardrobe right now.  Her jacket, she will wear occasionally but only if its so cold that the discomfort of the jacket is trumped by the discomfort of the cold.  It has to be pretty darn cold before that happens.
She is still willing to wear an assortment of underwear, a handful of boy's superhero briefs we've had for at least 3 years, some Target brand undies turned inside out, and her 3 pairs of Hanna Andersson flat lock seamed underwear.  Socks as mentioned before have been out of the picture for almost a year and the only pair of shoes she will wear are hand me down Keens sandals.  

I've had a number of folks who are struggling with similar issues ask me to share what we do in OT as well as any tips I pick up along the way and I thought this might be the most efficient way to go about doing that.

First I want to share a site I found in my desperate search to understand what is going on with my little girl. A Sensory Life is an amazing resource for caregivers and loved ones that not only lays out what it means to have a sensory processing disorder but also lists some OT activities that you can try at home as well as provides links to shops that sell therapy tools and clothing intended for kids living with sensory issues.  I highly recommend checking it out.  

Second, our first OT appointment was encouraging and informative.  Aria's therapist explained that sensory issues run on a spectrum and that every one of us has sensory needs but how much depends on the individual.  As adults we tend to fulfill our sensory needs without even thinking about it.  Listening to a lecture we might tap our foot to keep ourselves alert so we can focus, trying to sleep we might darken the room or buy a white noise machine to help calm our minds and bodies, and so on.  Kids though are obviously still learning about their bodies and needs and those who fall on either end of the spectrum may struggle a bit as they learn how to manage their unique needs.  

According to her therapist Aria appears to both a seeker and an avoider.  What this means is that sometimes she needs more sensory input and actively seeks it.  You can see this when she asks for bear hugs or wants us to literally lay on her and squish her.  It could be the reason she bounces and spins a lot, why she has a tendency to chew on things, and funnily enough why she loves roller coasters and fast rides.  But she also avoids input as well and this is seen her her aversion to most clothing and shoes (seams, tags, tightness, bunching, etc) and her preference for nudity.

For a person like Aria who is living with sensory issues, clothing can be a literal nightmare.  Like all of us her body has millions of nerves which send information to the brain about tactile sensations. Unlike the rest of us though her brain tends to overreact and exaggerate the sensations.  Clothing that probably would not bother a person with a normally functioning system is perceived by her brain as too tight or itchy or hot and disrupts her ability to focus on anything but the offending article of clothing.  One site I read described seams and tags as feeling like tiny needles constantly pricking the skin.  

An a-ha moment for me was discussing Aria's sleep issues.  My child has had sleep problems since the day she was born and apparently this is not at all uncommon for people with sensory issues as they can have a difficult time settling their minds and bodies enough to actually fall and stay asleep.

Okay, so what does one do about all this? I don't think I know quite yet.  I'm still at the gathering information and understanding the issue we face part of the adventure.  What I do get so far is that it's important to ensure that Aria gets the appropriate "sensory diet," a term used in the SPD (sensory processing disorder) world to describe a carefully planned schedule of activities to ensure that she gets the right sort of inputs so she can stay (mostly) focused throughout the day,

We have a color chart that the therapist gave us to hang in our apartment. 
Blue indicates that she is sluggish or sleepy (a good state to be in at bedtime), green means she is calm, focused, and comfortable  (a state that is desirable for most of the day), yellow refers to starting to get silly or lose control (an okay state when having fun or goofing off), and red means out of control and unable to focus or follow instructions (pretty undesirable but not completely avoidable for any of us).  

In order to help us and Aria become more aware of her sensory needs we need to become more adept at identifying which state she is in.  At least 5 x a day, I'm supposed to inquire which color zone she is in and then we choose from a menu of activities that are geared for that particular zone.  The following is a list of possible activities for each zone.  If you look closely, you will see that some activities are listed for multiple zones.  

Blue (unless it's bedtime): glass of cold water, brisk walk, jumping on trampoline, run in place, jumping jacks, and fast swinging.
Green: play doh, table top activities, reading, listen to music, pushing/pulling or carrying heavy objects, and wall push-ups.
Yellow: big hugs, rocking chair, deep breaths, compression clothing, wall push-ups, and jumping jacks.
Red: chill out zone, deep breaths, calm music, and turn out lights.

Of course some of these may not work all the time or at all.  If the first activity she chooses doesn't help, we are supposed to try another. And of course as we move forward, we'll learn new activities and become better at identifying which ones work and don't work for Aria.  

In addition to understanding what zone she is in and how to respond, finding clothing she can tolerate is near the top of my list.  I have begun the search and will report back with my findings on another date.  I just ordered one pair of socks from a site that claims they are 100% seamless; I'll let you know what Aria thinks about them when they arrive.  I am in dire need of pants, long sleeved tees or really any shirts at this point, a jacket, and more appropriate shoes for Aria.  Yesterday we tried to find some shoes at Payless but we left empty handed; every pair in her size and the next two sizes up on were too uncomfortable.

Aria did her best to give each shoe a chance but none of them worked.  It was actually incredibly sad since she so desperately wanted to find new shoes.  If you look closely you can see the inside seam of the pants that bothered her so much we had to turn them inside out.

If anyone knows of good clothing or shoe sites or brands for me to check out, please let me know. Affordability is somewhat of an issue as we are on a tight budget and cannot afford to spend a lot of money. So for instance, I've heard that Hanna Andersson can be a good option but that brand is somewhat out of our price range.  Although I am certainly not opposed to second hand, so if you know any resale shops please do let me know!  

I also ordered the books The Out of Sync Child and The Out of Sync Child has Fun and will let you know what I think of them.  Both come highly recommended by Aria's therapist and moms of kids with sensory issues.  

In the meantime, those of you with more experience please feel free to chime in and offer information or advice.  I'm very new to all of this and know I have a lot to learn.  If anybody has more questions about sensory issues, OT, or anything related to either, feel free to ask away and I'll do my best to answer your questions or point you to where you might find the answer.   


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