Paper Towels and Other Small Victories...

The bane of my daughter's existence...

One of the things we are working on with C right now is helping her develop self-advocacy skills.  We want her to have the ability to not only know what she needs to help regulate her senses in different situations (like grabbing the stress ball she uses to stay focused during circle time at pre-school), but also to speak up appropriately if something doesn't feel right (rather than having a meltdown or working herself up in anticipation of her needs not being met).  These are good skills for all children to learn, but for kids with SPD, it can be a bit more of a challenge because it's harder for them (and the people around them) to understand what makes them tick, what might set them off, and why they are so sensitive to it in the first place.  Helping C learn what she can do to help herself, and why we are having her do the things we are doing (like special activities and exercises in the morning before she goes to school) is an important part of her therapy - and in little ways, we are beginning to see our efforts pay off.

C has always noticed the sounds around her.  Even when she was a baby, she would stop and stare at the sky, looking for the airplane that no one else could hear quite yet because it was still too far away.  The vacuum used to scare her;  now it just annoys her.  We now know that if we give her a heads-up that we are turning it on, she can prepare herself for it rather than being startled by it.  During C's evaluation, we found out that one of the pieces to her SPD puzzle is that she has auditory hypersensitivity - she's very aware of and can be distracted or irritated by sounds in her environment.  

We are lucky - C's hypersensitivity is much more subtle than it could be.  Some kids have a hard time even leaving their homes because they are literally bombarded and upset by the world and all its non-stop noise.  For the most part, C has a pretty easy time - she just notices the sounds and can be distracted by them  (which can be tricky at school, for obvious reasons).  But places like public restrooms can definitely get under her skin.  She does not like to be startled by the loud automatic toilets and hand dryers.  She has even been known to avoid going to the bathroom until the last minute or have a tantrum and demand that she doesn't need to wash her hands (uh, yeah you do, kiddo).

Well, we had a little "A-ha!" moment while out to dinner with my family this past Friday night.  My sister and I took C to the bathroom just before it was time to head home.  C went into the stall by herself, took care of what she needed to do, and didn't flip out over the flush.  Then, when she came out of the stall, she very calmly turned to my sister and said, "I think I would like to use a paper towel to dry my hands.  I don't like the hand dryer."  No meltdown - no "I'm scared!" before we had even asked her to wash her hands.  She knew what came next, anticipated what was potentially going to upset her, and spoke up politely for herself.

It was a small moment that likely would have gone unnoticed if I wasn't becoming so aware of the way C sees the world.  But for us, it was a big deal.  I gave her a big hug and complimented her several times over the rest of the evening for how well she had handled herself in that situation.  She seemed really proud of herself, too.  I am learning that with SPD, it truly is the little things that can add up to something big...


Welcome to Our Perfectly Imperfect Life...

I've had a blog before.  It was a really fabulous diversion for me - a place where I posted about fun stuff like parenting tips, great finds and bargains, and occasionally something about my life in a wheelchair.  Over time, however, life just got too crazy with buying and selling houses, starting a stationery company with my best friend, my husband wrapping up his Master's in engineering, having a second baby, and so and so on.  My blog became one more thing on my to-do list, and so it fell by the wayside (not unlike a lot of things that all mothers would love to do for themselves and by themselves, if only there were enough hours in the day)!  I haven't written on the old blog in almost two years.

So what, you may be asking, has changed in my life to make time to start "Our Perfectly Imperfect Life..."?  Well, to put it bluntly, nothing has changed, and yet EVERYTHING has changed.  I am still haggard and harried, totally busy, and without enough hours in the day to do all the things I want to do.  Our family life is still a non-stop whirlwind of activity.  All of that's the same.  The one big thing that is different for us is the recent diagnosis of my older daughter, C, as having Sensory Processing Disorder, or SPD.

SPD is a tricky disorder that is hard to sum up in a few short phrases.  In a nutshell, people with SPD have a hard time handling the input they are getting from their environment through their eight - YES, you read that correctly, EIGHT - senses.  Some people with SPD are overly sensitive to what the world is throwing at them, while others are less sensitive.  Some people, like my daughter, are actually both overly- AND under-responsive, depending on which sense you are talking about.  Each case is like a snowflake, unique in the shape and form it takes.  The Sensory Processing Disorder Foundation has a great page that gives a more thorough overview of what SPD is, what it looks like, and how it's treated, to give you a bit more info on what I'm talking about.

SPD is NOT autism, or ADHD for that matter.  Yes, lots of kids who are on the autism spectrum or have ADHD have SPD, but not all kids who have SPD also have autism or ADHD.  The conditions do sometimes share some common characteristics and treatments, but they are not the same.  This misconception frustrates me for many reasons, which we will get into in another post, when I've had time to digest what exactly drives me nuts about it.

Over the past few months since C's diagnosis, we've spent lots of time in occupational therapy (OT), reading lots of books in an effort to become overnight experts on the subject, working to help her teachers understand what makes her tick and support her in the classroom, and familiarizing ourselves with a whole new vernacular that includes "vestibular"... and "proprioception"... and "motor praxis"... and "sensory diet."  I still don't think I can fully explain what's going on with my daughter with any sort of confidence, but we are getting there...slowly.

As we've been moving through this process, I have had this need to talk it out, figure it out, and share what I'm learning so I can better understand it myself.  Having good friends who have been through this with their own kids, or who are just beginning this process for themselves, has been invaluable.  Our family has been awesome, too.  But I still needed another outlet, and that's how I have come back to blogging.  Hopefully what I write here will not only be therapeutic for me, but also helpful to someone else.

Just like our family's life, the blog will NOT be entirely about SPD!  This diagnosis is just a tiny piece to the very cool puzzle that makes up my daughter and our family.  She is so very typical in so many ways, and like so many other kids with SPD, she looks and acts like any other kid a great deal of the time.  It's the other times where she is just a little more sensitive to her environment, and over- or under-reacts accordingly, that set her apart just a bit.  We'll dive into what we are doing to help her better navigate her world in future posts.

Anyways, that's it for now.  I'm excited to be back at it - I hope you stop by often to see what's going on in "Our Perfectly Imperfect Life..."!