SPD Awareness Month in October

October is SPD Awareness Month, and it is also the 30th anniversary of the SPD Foundation, so there are lots of things happening in the SPD world to raise awareness and money to develop more understanding about this disorder.  Here are a few highlights:

Both here and on Facebook, I'll be posting 30 facts in 30 days to raise awareness about what SPD is (what it is NOT), who it affects, and how it affects them (us).

Hartley's Life with 3 Boys is doing something special on her blog this month -- 30 stories in 30 days!  She's collected stories from 30 different SPD families and will publish a new one every day.  She's also doing a fundraiser (with prizes!) for the SPD Foundation, the main organization that conducts and publishes research on SPD, offers support and advocacy for families and educates the world about SPD.  Please take a look at the stories -- you'll probably find a lot of commonalities to our story.  And if you are so inclined, you can click Chip In button on the right (top right of my blog page) to donate to her fundraiser (putting my name "Andi at One Sensation Life"  in the comments box will score points towards a prize!). 

Soft Clothing Company, a maker of tagless, seamless clothes for kids and adults with SPD, has special discounts and a list of other SPD Awareness events as well.

Movin' up in the world :)

If you've been around since the very beginning (a whopping couple of weeks ago), you'll notice a few changes around here.

1)  I've become a member of the SPD Blogger Network, which means that people looking for blogs about SPD on Hartley's website Hartley's Life with 3 Boys will find a link here.  And you can click on the SPD Blogger Network button over there -----> to go to that list.  Hello and welcome to the fellow SPD bloggers and parents that have found their way here from that site!

2)  I've spiffed things up a bit with a new header picture (taken by my good friend Ben Dillon) and new fonts.  I'm still new at blogging, and not very techie, so hopefully I'll get things the way I would like them over time :)

3)  I was honored with a blog award :)  Thank you to fellow SPD Blogger mom Jaimee at Our Life with SPD  for the award!  As part of the award, I am supposed to share seven things about myself and then pass the award along.  So here goes:

• I'm a bit of a word nerd and love to laugh over conversations about grammar and word usage.
• I love to sing, even if I am terrible at it.  For the sake of others, I try to reserve such singing for car trips alone :)
• I love to travel and wish I could do more of it -- seeing new things, learning about other cultures and local histories, trying new foods and pasttimes, it all energizes me!
• Blue is my favorite color.  Is that why I have two boys?  :)
• My cell phone is just a phone.  It doesn't surf the web; it doesn't take great pictures; it doesn't play music.  It just calls people.
• I was diagnosed with ADD as an adult (mind you, I graduated valedictorian in high school, top of my class in college, and have a graduate degree) and I believe it is an accurate diagnosis.  I can hyper-focus sometimes but otherwise rarely finish one thing at a time, if I ever finish anything at all.
• I don't drink much of either, but when I do have coffee or alcohol, I like them "frou frou" -- if you wouldn't put whipped cream or an umbrella in it, I probably don't want to drink it!

Now to pass the award along, I'll send it to one of my favorite bloggers who is a friend from high school, Ellajac at Aspiring to Simplicity. 

In the works, a blog about food (Josiah is on a GFCF diet and is dairy/soy allergic, and baby Malachi seems to be gluten intolerant, so while I'm nursing I'm also on the GFCF diet -- food is tricky around here!) and one about mortality . . . stay tuned :)

And Now There Are Four . . .

Josiah is a total extrovert – an extremely social kid who absolutely craves interactions with others, especially other kids.  We do what we can to give him appropriate social outlets and, more importantly, teach him the social skills he needs to be successful in those social outlets.  We have friends with kids his age (include a set of boys who are about 18 months older and younger than Josiah) and also attend a weekly park play day with a group of homeschooling families.  But Josiah has always wanted a brother.

For a couple of years he had been asking for a brother.  I remember one particular conversation we had in the car that went something like this:

Josiah:  Mom, can we stop at the store and get me a brother?

Me: It doesn’t work that way, sweetheart.  They don’t sell brothers at the store.  The  only way to get a brother is to ask God to send us one.

Josiah: (eyes closed, head bowed)  Jesus, please send us a brother.  (pregnant pause, pun intended)  Mom, nothing’s happening!

Me:  Well, honey, even if God answers your prayer, it will take a long time for your brother to come, and he’ll be a baby when he first gets here.

For the next few weeks, I saw him noticing babies with their older siblings and making the connections in his brain about how it would all work.  And only a few weeks later we discovered we were pregnant with our 2^nd baby.

Josiah was convinced from the very beginning that we were having a boy – after all, it was a brother he had prayed for, not a sister.  When the ultrasound told us it was in fact a boy, he said, in a tone that questioned why I would doubt his wisdom, “Mom, I told you our baby was going to be a boy.” 

Throughout the pregnancy, Josiah was so excited and already such a fantastic big brother.  He was so patient when I wasn’t feeling well, bringing me toys and stories and tucking me into bed to give me rest and help me feel better.  He loved to talk to the baby, rub my belly and give him cuddles and kisses – anytime he greeted me hello or goodbye, he included a greeting for the baby.

Despite his excitement and compassion so far, I admit I was a little nervous about how it would all go once the baby actually arrived.  After all, it’s one thing to think you’ll enjoy a baby and whole other to deal with having one living in the house (and taking up lots of mom’s attention and time).  We talked a lot about what babies are like, read books on having a new baby brother, and practiced reading to the baby and playing peek-a-boo.  His biggest fear was that he would somehow miss the baby’s birth:  “Are you sure Grandma will bring me to see the baby?  Did you tell her how to get there?  Don’t let her forget!”

Malachi arrived quickly one early Tuesday morning, before Josiah was awake.  My mom let us tell Josiah over the phone that the baby had been born and I’ll never forget the excited squeal “He’s really here?  Oh I’m so excited!”  She fed him breakfast brought him straight down to the birth center.  Josiah got to help weight the baby and measure him, helped dress him in the coming-home outfit that he had picked out for the baby to wear (the same outfit, in fact, that he had worn home when he was born – he wanted little brother to wear the same thing!) and even got to pick out baby’s first hat.  And for weeks, he told everyone we saw (from friends and neighbors to strangers at the grocery store) about “our new baby brother.”  He was so proud and protective already!

From the moment he arrived (and even before), Josiah has been fascinated with the baby.  We can’t even change a dirty diaper without big brother looking over our shoulder to see what’s going on.  There have certainly been challenges – some that I’m sure are common in all big brother situations and some that may be specific to Josiah’s sensory issues – but all in all, it’s been so great!  Malachi has been “colicky” and spent a lot of time crying, especially in the car – not only does that mean lost attention , it is also a challenge to Josiah’s auditory system.  We had to get creative with headphones in the car to help Josiah manage all the extra noise!  Josiah often gets too loud or moves too fast and startles little Malachi, and we have to keep a close eye that he doesn’t squish him with his full-body hugs or bonk him when trying to keep his face too close or squeeze him too tight while he’s playing with him.  But there are times that Malachi’s biggest smiles are reserved for big brother, and Josiah is always listening for baby to cry out, rushing to his side to comfort or cheer him up.

I can hardly wait to see how their relationship grows.  There will be struggles, I’m sure, as both boys manage Josiah’s SPD issues (and Malachi’s personality develops) – but for now, I couldn’t ask for a better outcome.  Fiercely protective and loyal, intensely proud and fascinated, Josiah has been an amazing big brother!

(This post is part of the SPD Blog Carnival, a monthly topic/theme for bloggers in the SPD Blogger Network and beyond.  For more great blog posts about SPD children and their siblings, check out the SPD Blog Carnival here.)

From the Archives: Confidence Undermined -- and slowly being restored with some "potty talk"

(Originally posted March 19, 2009)
One of the biggest challenges for me with having a special needs child is the hit my confidence took. His sensory issues have caused me to second-guess everything I felt I knew about child behavior, rules and boundaries, and discipline. Holding firm boundaries consistently was never (and may never be) my strong suit, but during his first year I was at least confident about which boundaries to try establishing and how to enforce them. When I became aware of his sensory issues, I had hard time determining when something was a sensory issue and when it was a discipline issue. While I didn't want to shape a child who failed to develop self-control and discipline, I also didn't want to enforce unrealistic expectations that were made impossible by his sensory challenges.


Oh sure, there are books to help you determine what behavior should be dealt with and what a typical four-year-old will display and then grow out of -- but all of that seems to be a bit out-the-window when you're dealing with a special needs child as opposed to a "typical" one. (Caveat: believe me, I know there really is no such thing as a typical child; at the same time, I could see a marked difference in my confidence regarding labeling things "typical" and questioning that label once I learned of Josiah's challenges.) While I hoped that reading and learning more about SPD would help make those distinctions more clear, that wasn't my initial experience with the information. One of the hallmarks of SPD is inconsistency in sensory-related abilities and arousal regulation; in other words, some days his sensory system seems to click and work fine while other days it is entirely out of whack. This only complicated the effort to dstinguish between what he was able to do and what he was not -- he genuinely was unable to do some things on a given day that he had done relatively easily only a day or two (sometimes even hours) earlier.


One of my biggest struggles in this area was regarding potty training. I use the past tense there not because Josiah is finally potty trained but because it is becoming less a struggle over confidence in my mommy intuition. From around 18 months, JoNo was interested in the potty -- unlike many children, he was never afraid of it and still thoroughly enjoys flushing it for anyone who will let him. Despite all this interest, and loads of encouragement from us, he never seemed all that interested in leaving diapers behind and actually USING the potty consistently. We tried all sorts of things, from the no-pressure approach to the sticker approach, even the "see, your friends at preschool don't wear diapers and use the potty" approach. We even bought a "potty watch" that lit up and played music every 30, 60 or 90 minutes to remind him to use the potty. Nothing made a difference. And while I would encourage more heavily at some times than at others, I always held back a little for fear it wasn't so much a matter of will but a matter of ability.


In the last two weeks he has suddenly shown tremendous interest in wanting to wear underpants and use the potty so there will be "no more diapers for [him]" as his Potty Book says. So that's exactly what we've done, at least around the house. And it's meant changing his outfit from the waist down a number of times a day. In observing him over these last two weeks, I've discovered that my instinct about it has been right all along. It isn't so much about motivation but about ability -- even now, he seems motivated but just not able. He has been consistently unable to get to the potty BEFORE nature has begun answering its call, but when he wants to he can stop it and rush to finish in the potty. And there is absolutely no regularity in timing -- sometimes he'd go hours between potty breaks, while other times he'd use the potty 3 times in under an hour.


All this potty talk to say that I'm feeling a twinkle of renewing in my mommy confidence. Like a bud just sprouting in the spring, I've still got a lot of growing to do, but through becoming a student of my child and really researching him individually (as well as SPD more generally), I'm finding my confidence returning bit by bit. I'm more able to recognize what he CAN do and maintain those expectations, and more able to handle the things he really can't do. I'm even finding more patience in handling those "gray area" issues where it is still unclear where his ability on a particular task is on a given day.


Our first therapist used to tell me that if discipline just wasn't working, it was a sensory issue -- and while that was helpful at the time, and is still a good general guide to making the distinction, it paralyzed me in some ways. When I could tell it was a sensory issue, and especially when I wasn't quite sure whether it was or wasn't, I was at a loss for how to handle a problem behavior. I would err on the side of doing nothing and slowly watched him develop habits and behaviors that went beyond mildly annoying. I finally got fed up enough, and learned enough about what and with whom I am dealing, that I've begun to find a better balance. I'm more and more finding myself able to draw boundaries and help him succeed at them even when the ability level for the task is unclear. And the empowerment and confidence-boost from it is encouraging!

UPDATES:  At nearly six years old, potty training is still a work in progress for Josiah.  He is mostly day-trained, though he still routinely has "accidents."  Sometimes he'll go a week without a single accident, only to have three straight days of several accidents a day.  He still has at least one accident most days, though it's usually just a tiny bit -- enough to require a clothing change but not to create a huge mess.  And night training isn't even something we've even started to tackle.  He still wears a diaper to bed and almost never wakes up dry in the morning (he still wakes at least once per night and probably pees then but isn't cooperative enough in his half-asleep grumpiness to go to the potty then).  So it's nowhere near finished, but all in all, the progress is moving a positive direction.

My confidence as a mother is consistently inconsistent.  Ames' and Ilg's book series talks about the roller coaster of cooperativeness most children experience, vascillating regularly (roughly every six months, they say) between persistently testing boundaries and comfortably operating within them.  Even if this is true for many children, it certainly doesn't feel true for Josiah (he seems in a perpetual state of boundary testing)-- but that's a post for another day.  My point in referencing it here is to relate it to the roller coaster that is my sense of competence at parenting.  I seem to go through phases of feeling relatively sure of myself and unphased by the questions and criticisms from unknowing onlookers alternating with phases of feeling absolutely clueless about my ability to do anything productive regarding guiding my child into an adulthood of compassionate responsibility. 

It's interesting to read a post like this one, written roughly 18 months ago, that reflects on a small piece of that roller coaster -- the hopefulness that I was finally "getting it" is now being replaced with a more realistic recognition that while the general movement is toward more self-assurance, the pathway there is far from straight.  I've fallen into more valleys of doubt, wondering just what God was doing thinking I could handle parenting at all, let alone parenting a special needs child.  And I've had more experiences where my intuition as a mother has served us well, giving me a needed boost of encouragement to keep trying to figure it all out.  And what I know more clearly now than ever before is that I will never really arrive -- that there is no final destination, only a road more comfortable and beautiful, even as it is challenging, with every passing mile -- it's a road I believe all mothers travel and am honored to be travelling myself (even if there are some days I enjoy and appreciate it far more than others).

'Til Death Do Us Part

Hubby was in a wedding this past weekend.  I believe there is something magical about weddings.  Saying your vows in front of cherished family and friends creates a fundamental shift in your life – there really is more to it than “a piece of paper” when you go from woman to wife and man to husband.  Psychologically, spiritually, physically – a shift happens almost like magic the moment your vows are spoken.  But the magic doesn’t seem to stop there.  Having been to (and participated in) several weddings in the last several years, I’ve noticed something: the magic extends to those in attendance as well. 

We have had a rough few years, hubby and I.  SPD hasn’t been the only challenge to our relationship, not by a long shot (stories for another time), but it certainly has been a relevant one.  Parenting is tough on a marriage in any circumstance: agreeing on how to handle everyday situations with children can be difficult enough when your child is “normal,” and we certainly never expected parenting to be a breeze.  We also knew we’d face a few additional practical struggles when Josiah couldn’t eat as a toddler and we first discovered his sensory issues, and  a few more when we learned his sensory issues were more pervasive than we originally realized and got his official SPD diagnosis.  But I don’t think either of us were prepared for the toll it would truly take on us to parent a child with SPD, individually or as a couple. 

Part of the difficulty is that it’s often hard to know whether we’re dealing with behavioral issues or sensory ones; and even when we do know, the course of action to take in dealing with those issues is rarely a clear one.  We’re not just driving without a roadmap, we’re driving without a clear windshield!  Add to that a mix of very different backgrounds as far as parenting in our families of origin and you have a recipe for some difficult confrontations about exactly how to handle this whole parenting thing. 

I sometimes feel like daddy doesn’t consider Josiah’s SPD challenges enough when he’s dealing with him; he often feels like I consider them too much and just need to expect more from him and discipline him more firmly.  I often get frustrated that he doesn’t read and research things like I do, so he could better understand our son and his SPD; he gets frustrated that I seem to spend a lot of time researching and not enough time implementing plans and dealing with the everyday running of a household.  The reality is that we are probably both a little right and a little wrong.

And then there are all the emotional storms each of us deal with individually that add even more to contend with in our relationship.  I wrote about some of my own emotional turmoil in coming to grips with the realities of having a special needs child, and while it gets better, there is always some level of distress, frustration, embarrassment, anger or sadness to deal with.  Josh doesn’t tend to talk much about how all this hits him, but I know it’s a factor as well (and perhaps the fact that he doesn’t talk about it with me is yet another factor adding stress to our relationship). 

Marriages have alarmingly small success rates these days even without relational strains like having a special needs child, and often those small success rates shrink even further when stresses like this are added in, so even if that was our only challenge, it would have been a rough half-decade.  But we’ve also had some other very difficult life circumstances come our way in the last couple years, and the combination of regular daily life and all these other challenges has taken its toll on our relationship. 

Don’t get me wrong, we aren’t on the brink of divorce or anything, but we certainly aren’t relating like either of us would like.  We are both determined not to become a divorce statistic, and while things are tough, we aren’t at a breaking point or anything – still, the road to relational bliss is not an easy one.  Not by a long shot.  I often find myself just as mystified about how to nourish our relationship as I am by how to nurture my SPD child.  As with anything, some days are better than others, but truth to be told, I’d always hoped for more bliss than we’ve recently experienced. 

Things are always a little different after a wedding, though.  There’s nothing like watching a couple, whose love is young and intense, to reignite commitment in your own relationship.  They are a good reminder of where we’ve been and would like to be again, and it’s a goal we both believe is worth striving for.  And perhaps that was always part of the design behind celebrating a marriage publicly . . . that the effects are felt in the entire community, and that by making your commitment of love for all to see, you can be part of something larger than yourselves.  So thanks, friends, for making us part of your special day – the magic of your wedding day has sensational impacts beyond what even you might have expected! 

Daybook Entry For Today

Outside my window... it's dark.  See, I'm a homeschooling mom with a 3 month old baby -- I don't have much time for the internet or blogging during daylight hours :)

I am thinking... that reading other mom's blogs about their children with SPD is both a blessing and a curse.  Great to find comraderie for similar struggles and get new ideas; not-so-great that most of the moms who blog are also bigger over-achievers at mom-dom than I am and I start to wonder whether I'm doing enough for my own child.  Need to find the balance on that . . .

I am thankful for... bursts of energy that make me productive.  I start back teaching tomorrow (two mornings a week from 9 to 2, so not terribly much time away but enough to feel nervous about -- and enough to drain a decent bit of extra energy!)  I know tomorrow is going to be completely shot as far as productivity at home -- I've already planned Tues through Thurs as Josiah's "weekends" where homeschooling is concerned and have relieved myself of too much pressure to get much housework done as well.  So it was nice to have a bit of extra energy (and baby nap time) today to get some things done so I'm not starting already way behind.

From the learning rooms... we're doing a unit on Fire Safety this week.  Josiah is loving it, as it involves plenty of role-playing time and actual practice of things (crawling around under pretend smoke; checking doors for pretend fire on the other side, etc.).  In preparation for a full fire drill later in the week (when daddy is home to help with the logistics of such a task), we tested each smoke alarm in the hosue today.  I chose a time that he seemed in a good mood and well-regulating, and fortunately baby was happy, too.  I was surprised at how well Josiah did with this.  It clearly disorganized his system a bit (he was on overdrive for awhile the rest of the day) but he was mostly "up" instead of "angry and low" so that was good.  And he even pushed the buttons himself!

From the kitchen... oh gosh, don't get me started.  Baby was "colicky" and only got better when I eliminated dairy and gluten from my diet (which is, incidentally, exactly the diet Josiah is on permanently).  While I'm used to SERVING such a diet, I'm not quite so used to eating it.  It's been a bit of a struggle, to say the least.  I'm running out of ideas to keep myself from being hungry constantly!

I am wearing... jammies right now.  My first-day-of-class clothes are hanging ready to go for tomorrow, though.  Does that count?  :)

I am creating... plans, mostly.  I never can seem to shut my mind off -- whether it's plans for Josiah's schooling, plans for the classes I'm teaching, plans for meal options, plans for finding time with hubby -- my mind is on constant "go" mode.  Oh yeah, that's the ADD in me -- who said our kids were the only ones with issues?!  :)

I am going... to sleep soon, I hope :)

I am reading... mostly other blogs by moms of SPD kids that I've recently discovered on the SPD Blogger Network (which I may be joining soon as well). 

I am hoping... tomorrow goes well, both in class and at home.  I haven't been away from baby that long yet, so it has the potential to be really hard on everyone (me, baby, daddy and SPD big-bro who has a rough time when baby is cranky and crying a lot).

I am hearing... the white noise machine in our room.  Truth be told, I really don't like that noise.  Hubby seems to really like it, and it seems to help baby some, so I tolerate it.

Around the house... are still a few piles of folded laundry, toys, homeschool stuff, and loads of other clutter.  But the kitchen is fairly clean, all bedsheets were washed today, and diapers are in the wash :)  (Did I forget to mention that we cloth diaper the baby?  LOL)

One of my favorite things... is ice cream.  In a waffle cone.  Thanks for reminding me of all I can't eat while I'm nursing baby.  :)

A few plans for the rest of the week: survive!  Truly, that's my main goal.  I'm generally a perfectionistic overachiever, but I know this week has the potential to be VERY challenging, so I'm really just hoping we all get through it unscathed.  Sensational living is on the agenda for next week; if it happens this week, it was by sheer grace of God!

The Moment It Hit Me

I’ll never forget the day I had to face the reality that I had “that” child, that my son had special needs that would require me to be spending a lot of my life advocating, learning and managing his disorder.  I fell (or intentially hid) in the same trap many do when dealing with SPD kids – because he looked and sounded so normal in so many ways, I wanted to believe he wasn’t REALLY special needs.  When I had to face it head on for the first time, it hit me like a ton of bricks really, as I’m sure it does any parent. 

There were certainly plenty of struggles already – after all, he didn’t eat food until over the age of 2, had been in some form of therapy from 15 months old, and already struggled with social skills despite a very extroverted nature -- so we’d had no shortage of opportunities for the reality to hit us.  But somehow it didn’t hit full force until preschool – and perhaps part of the pain was because the moment felt so public. 

We had enrolled Josiah in a preschool program that seemed to fit his needs exceptionally well – for 45 minutes on each of the 3 days he was there, the kids participated in a tumbling class, walking on balance beams, bouncing on a tumble trak trampoline, hanging from bars.  In a nutshell, it seemed like built-in sensory therapy.  But we were a few weeks shy of his official diagnosis and had so much to learn – and if there was a lot we didn’t understand about Josiah and his SPD, there was even more the staff didn’t get either. 

They were phenomenal, really, in trying to help troubleshoot the problems and create an environment where Josiah could succeed.  Even while I was grateful for their commitment, it was such a struggle to be called in to the “principle’s” office to discuss your child’s issues.  I cried through nearly the entire meeting.  My tears came from a variety of places – partly relieved that I wasn’t the only one seeing his “problem behavior” and finding no success with traditional discipline strategies; partly proud of the positive traits they were praising in my son; partly grateful at their apparent interest and willingness to help in any way they could; partly frustrated at feeling clueless myself on what to do or how to help; partly embarrassed and fearful of judgment from others about our parenting or my child’s personality.  It was, in a given moment, the full range of emotional highs and lows that come with parenting a special needs child, especially one who looks and sounds so “normal” at a glance.

Every so often, something happens that brings me right back to that emotional turmoil – a critical comment from a loved one, looks of judgment from onlookers in public, the challenge of explaining it to friends or peers, some of whom understand and some who seem not to.  And there are no shortage of practical challenges that aim to incite those emotions (from behavioral difficulties in Josiah to fights with the insurance company) so I know those moments will keep coming.  But I’ve found that I rebound just a little bit quicker each time, that I can handle it a little bit better in each subsequent situation, that I seem to find a bit deeper source of grace every time I’ve faced with one of these moments, that I grow and learn just a little more about myself, my life, my family, every time.  And that really is what it’s all about, right?  A bit more grace and a bit more understanding with every new step, no matter what path your sensational life is taking.

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.

Gotta Start Somewhere :)

The perfectionist in me hates starting things in the middle -- and the tired wife/mom/woman in me doesn't have the energy to go back to the very beginning of the story just now (and where would that be anyway?  birth of my first child? wedding day? meeting my husband?  my own birth?) so I'm just going to start with a "Daybook" entry.  Star Date:  September 15, 2010 :)

Outside my window... it's dark and rainy.  As usual, I'm up WAY too late (hence, the dark) and I live in the Pacific Northwest (hence, the rainy).

 

I am thinking... about the lessons I should have prepared more fully for on this fire safety unit we're starting tomorrow.

I am thankful for... our health and safety.  We don't have to fret over where our next meal is coming from, or finding shelter from the rain, or any serious debilitating illness -- it's a pretty cushy life :)

I am wearing... my jammies.

In the learning room... interesting category (I didn't preview this whole daybook entry thing before I started -- just jumped in!)  Right now, our "learning room" (aka homeschool headquarters) is a total disaster area!

I am remembering... how much more peaceful and calm it was to mother Josiah as a baby.  Not only is Malachi a much more intense baby, it's just all around more chaotic with an SPD kindergarten underfoot!

I am going... to sleep soon, I hope :)

I am currently reading... other blogs by SPD moms, and the Little House on the Prarie series of books as I wish for my own little house on the prairie (living in a condo isn't as sensational as I'd like it to be!)

I am hoping... tbat we might be able to start househunting soon!

On my mind... how I'll get through tomorrow, meeting the needs of both my boys, without caffeine!  (I'm nursing and the little one doesn't like caffeine.)

Noticing that... I bounce back and forth between trying to guard my privacy some and wanting to just share it all with whomever is interested to hear.

Pondering these words... "You can't change the wind but you can adjust your sails."  Now if only I knew how to sail :)

From the kitchen... gluten-free dairy-free pizza (topped with sauce, ham, olives, zucchini, mushrooms and red peppers) with gluten-free dairy-free peanut butter cookies for dessert

Around the house... lots of clutter.  I really need to get that under control.  *sigh* someday

One of my favorite things ...  super soft fuzzy blankets.