Thanks for joining me along the journey! I'd love to hear what you want to know ... do you have questions about sensory processing disorder, gluten-free/dairy-free diets, homeschooling, faith, life in general? Send me a note or post a comment and I'll try to write something that addresses your interests and questions!

Friday, September 17, 2010

The Backstory

I started this particular blog in an effort to tie the parts of my life together into one blog, in one place.  I had originally started a blog about motherhood when Josiah was a few months old.  After we got his SPD diagnosis, I started a different blog to focus on SPD -- but I decided that was a lot more to my life (especially after we had Malachi) than just Josiah's SPD, so I wanted to start a new blog that would tie all those pieces together.  SPD is certainly a fairly consuming issue for us as a family, and I'm sure it will factor in heavily in this blog -- but so is homeschooling, Malachi's budding personality, and my role as a wife, a Christian and just plain me!  With all it's challenges, my life really is sensational, and it's the only one I've got, so here it is :)

That said, here's the backstory on Josiah's SPD so that you're aware of what it is and how it affects us.  The text below is taken from a couple of entries from my older blogs (I may post more of those archives down the road, but for now, just the background will do!):

And SPD is . . . ? (Originally posted November 6, 2008)

An excellent question! Sensory Processing Disorder (SPD; also known as Sensory Integration Dysfunction, or SID) basically means that one's sensory systems aren't working smoothly; somewhere between receiving sensory input, interpreting the input, and/or responding to the input, there are breakdowns in the system. In some cases, the system is oversensitive; in others, it is undersensitive. There are lots of ways this might "look" in a child's (or adult's) behavior and it can have far-reaching impacts physically, socially, and emotionally.

Josiah's SPD problems mostly have to do with oversensitvity to sensory input and difficult regulating the input and responses. In other words, his brain doesn't accurately interpret sensory input or effectively moderate sensory input/response. For example, light touches (especially unexpected ones) seem more aggravating than they really are; noises sound louder and more piercing; movements (like falling) seem farther (and therefore more frightening) than they really are. He also has a hard time regulating or modulating his sensory input, so he doesn't recognize when he's nearing sensory overload, and he has trouble regulating his arousal levels: he goes from happy to tantrumy-angry in half a second; he has trouble staying asleep at night, knowing when he needs to use the bathroom before it's actually happening, even regulating his body temperature (waking up at night drenched in sweat from his body over-responding to temperature changes).

The good news is that he's really smart and seems to compensate fairly well, so even though it's a lot harder for him to do normal things, he tends to figure out how to do many (though not all) things his own way. The bad news is that he's really smart and compensates fairly well in a lot of areas so people can't readily tell that things that seem effortless are actually a great struggle for him.

While it looks like he's been effortlessly enjoying the play area, his neurological system has actually been on high alert the entire time, trying to make sense of every unexpected and seemingly-too-large noise, touch or movement.

While it looks like he's just being stubborn about wanting to be fed, he really has exceeded his patience and motor planning abilities spooning the first six bites of soup from the bowl, so even though he's still hungry, the task of getting it to his mouth is daunting enough to ask for help.

While he almost never falls down the stairs, you'll notice, if you pay attention, that he is still very deliberate about each step, using both feet on each step and regaining his equilibrium every time, unless his vestibular system has the safety net of mom's hand to hold, when he is able to take the steps with only one foot.

While it looks like he's just being a baby about the fall he's taken, his brain thought he fell 10 feet rather than 2, and even though he knows he's not hurt, he's really shaken up.

While it looks like he's just greedy and territorial, he's really just protecting his personal space to ward off as much unexpected sensation as possible.

While it looks like he can't possibly be oversensitive to touch when he can't seem to keep his hands from touching everything he sees, or to sound when he seems to enjoy making lots of it with his voice or "instruments" around the house, he's really self-medicating; his brain knows that the only way to blaze those neurological trails is to use them over and over and over, and without a good sensory trail in his brain, every touch really does feel new, like he's never touched it before.

While it looks like he's just a picky spoiled eater, he's really having trouble getting past new textures, strong (or bland) tastes and smells, and even coordinating the feel of chewing and swallowing without panicing.

While it may seem that he wakes up several times at night because he's spoiled and knows we'll come to him, it's really a problem with his brain keeping his arousal levels low enough to stay asleep. He'd keep sleeping if he could, but his brain won't let him.

While it looks like he's got a temper that is off-the-charts and out-of-control, he's really amped up about all the extra sensory input he's receiving, and he doesn't even notice that he's getting overwhelmed until the moment it rushes out. He's having to manage bigger-than-age-appropriate emotions with less-than-age-appropriate sensory skills to regulate his body's response to stress.

While it's validating to know that my mommy instincts were right that something wasn't right and I'm able to get some help with figuring it all out now, it's also really tough learning to accept and understand how to cope with having a child with special needs, especially one that others won't automatically recognize as having special needs. More on coming to grips with that in future posts . . .

How? Why? . . . and what now?

How I wish I knew! SPD seems to follow a similar pattern of emersion as autism-spectrum disorders, and many of the same treatments (and theories on causes) apply as well. Lots of kids show no symptoms before several months, or even a year or two of age, and many of these parents attribute a large part of the blame to vaccines, and I believe them, which is why we have avoided vaccinating Josiah. But that does make it more perplexing to me where it came from for him!

Oh, despite having done as much as we could to give him a healthy start in life (breastfeeding, even when we discovered his dairy/soy allergy, cloth diapering, no vaccines, etc.), we have lots of possible culprits but no real definitive answers. Was it the forceps used in his delivery, that may have smushed his brain or tweaked his spinal column and affected his neurological system? Was it the handful of ultrasounds (3?) we had done during the pregnancy? Is it due to environmental toxins (offgassing from household items, packaging, etc.)? Is it just bad luck, or genetics?

Looking back, I'm convinced he had SPD problems beginning at birth -- the only time they took him from me the first night was to wrap him in heat packs and blankets because he wasn't maintaining his body temperature well. Common for a lot of normal babies, I know -- also common, and continuing into childhood, for SPD kids. And there were other early signs -- he screamed in the car and hated his baby swing; he would startle, even from a dead sleep, at someone opening the blinds in the next room; he chewed on every inanimate object he could get ahold of, but rarely put food items into his mouth; even at nearly a year old, anything we tried to feed him was gagged on, and it took months of sensory therapy to teach him to tolerate food in his mouth, to learn to chew it up instead of just storing it in his cheeks, and to coordinate swallowing it.

At first we believed (or just wanted to believe?) that any "problem" he had was just an immature neurology, and that it only affected his mouth, and would go away. In fact, when he "graduated" from early intervention therapies at age 3, he seemed to be doing fine. But over the next few months I started seeing things that bothered me -- he didn't seem to be making much progress in learning to dress himself, or use eating utensils or writing utensils. Despite a keen interest in them, and several attempts, he could never get the hang of pedaling a tricycle -- even though kids half his age could do it. I could no longer use the "he's just not interested in that skill" excuse, which is true in many cases but was clearly not the case in many of his self-help and tricycle related challenges. And then there were the meltdowns and outbursts of anger and frustration. I tried dozens of parenting tools, and after a few months, even posted a question to my "positive christian attachment-parenting" moms group asking for help. The first, and only, reply to my post asked: have you ever had him checked for sensory issues?

The realization hit me like a ton of bricks. Harriet's (she was Josiah's therapist through early intervention) words regarding eating habits rang in my ears: "If discipline just isn't working, it's a sensory issue." And then the wave of mommy-guilt washed over: "Duh! How could I not have put the two together?"

I borrowed "The Out-of-Sync Child" from the public library, and even before I finished it, I bought my own copy. I could hardly believe it -- those vignettes, the before-and-after stories, sounded just like Josiah. Cowers from loud noises? Check. Overreacts to unexpectated touch or sound? Check. The story that really hit me was of a kid who just didn't seem to "learn" not to touch the cat; despite several scratches from the family pet, the child repeatedly tried to touch, cuddle, and lay on the cat (laying on things gives you loads of deep-pressure sensory input, especially if what you're laying on is warm and soft). I thought the author had been watching our family's trials with a new kitty for the last few months and outed us in her book.

So how do you deal with sensory processing challenges? You create opportunities for loads of sensory input, combined with understanding what/when sensory overload is coming and pre-empting (or at least managing) it with some calming and/or sensory-organizing tools/techinques. In most cases, that means getting occupational therapy to stretch those sensory boundaries under the guidance of someone who knows what they're watching for, when to push and when to let up, and what sensory experiences will help most. The good news: we live nearby an occupational therapist who specializes in sensory processing disorders and is excellent at what she does. The bad news: the wait list was LONG!

Those four months on the wait list were tough. Not everone around us was immediately convinced or supportive, and even those who were didn't really know how to help. And all the skepticism pounded in my head, creating doubt and inspiring second-guessing. I knew deep down that this was the problem, but the skepticism, parenting advice ("you just need to show him who's boss") and even well-intentioned "I'm sure everything is fine -- he's just spirited/being a boy/not interested/will grow out of it" comments pestered me. I almost crossed our name off the wait list a few times. I kept reading parts of the book out loud to my husband, or asking "don't you think this sounds like JoNo?" until he was ready to tear his hair out. And even though I didn't want to need it, I was desperate for the definitive opinion of an expert.

And finally our name came to the top -- and the expert said everything I knew and so needed to hear. "Most people would never look at him and think there's a problem. He's so smart he compensates a lot, and he relies really heavily on the one system that actually works for him. But I can look at him and know what's working and what's not. And I can see that most of his sensory systems are not working for him very well at all." I left that appointment overjoyed -- I knew the discouragement of the diagnosis would come, but at that moment I was relieved. I could trust myself again -- my motherly instincts, my critical thinking skills, my compassion. I could know and understand my child again. I could love him without fear that I was loving him too much for his own good.

It's as if I finally gave myself permission to view his behavior through this lens. I immediately started studying Josiah again. I watched the way he responded to sounds and touch, and especially to movement. I joined an online e-mail group for parents of children with SPD and learned that his sleep and night sweats were probably also related to the SPD. I spent hours at my sewing machine making weighted blankets and vests for firm deep pressure (calming) and at my computer studying up on dietary recommendations. And we started therapy -- an hour a week of sensory smorgasbord.

I've honestly not really asked "why us?" I don't really wonder why we're faced with these challenges. I already know enough of the answers. God knew we'd figure him out, we'd make good choices for him even before we knew of his struggles, we'd do our best to nurture him the way he needs to be nurtured rather than judging him by other standards.  More importantly, though, He knew what we need to learn and how we need to grow ourselves -- in raising up Josiah, He's raising us up, too.
Having read what I wrote nearly two years ago, I'm astonished at how far we've come in some areas and at how much we still have to learn.  My confidence in mothering rides dramatic roller coaster waves, and my concentration in being a student of my son ebbs and flows, too.  Just as others do, we often find ourselves "forgetting" about how pervasive Josiah's SPD is, about how thoroughly it affects all of his behaviors, and getting frustrated with him.  Some days we manage really well; others, it's a struggle just to get the basics covered for the day.  And as he grows up, we face new challenges, new skills he must master, new sets of experiences and emotions to tackle, new expectations from the world to manage.  I'm glad I don't know what we'll face next year; I'm sure I'd be overwhelmed because I'm already overwhelmed enough with what we've got on our plates right now.  But somehow we are given just enough grace to get us through, to carry us to the next step and struggle, to find new ways to keep life sensational for all of us.


  1. Oh Friend! I so know what you mean. I'm so glad to have this blog to read! I have missed you and I'm sad I haven't met Malachi yet since I knew about his coming before many others did :). Love you and come by my blog sometime, too!
    In Him,

  2. Hi Carolina -- Thanks for dropping by and leaving a note :) We'll definitely have to get our boys together sometime! See you in cyberspace if nothing else :)