Tuesday, November 25, 2008

Small Successes

We're learning so much from our OT and are seeing small successes already!

One of the things that often plagues SPD kids is oversensitivity during haircuts, which leads to tactile defensiveness and meltdowns! It doesn't help that one time the hairstylist knicked his ear with the clippers. Even though he sometimes wants to get his haircut, and will even ask to go, he only lasts about 3 minutes before all the combing and tugging at his scalp drives him crazy. At that point, haircutting becomes quite the struggle, if it is possible at all -- he either screams, refuses to hold still, or even hits at anyone trying to comfort him or cut his hair. We've tried everything -- distraction (books, movies, toys, candy), rewards (bribing him with a trip to the dollar store or a new toy or more candy), going really slowly and talking him through it at every step, trying to avoid his triggers (the cape around his neck and any touching of his ears at all), etc.

Some sessions have been more successful than others, but none of the have been comfortable, and some have been downright miserable (screaming till he nearly vomits or at least driving EVERYONE in the place crazy). We both end up covered in sticky sugar, hair clippings, sweat and tears, and a marginally crummy haircut. We do haircuts as infrequently as possible (every few months) but he's got so much hair that we really can't just let it grow, so it needs to be done.

On his birthday (what a mean mom, eh?), we wanted him to have a nice haircut for his party and pictures. We had a friend's mom (who has worked off and on as a hairstylist) come to the house and tried all our new coping tools. He was in his own environment with some distraction (a movie and lots of conversation about it). We skipped the cape, let him sit in his favorite chair, and were very careful to guard his ears (he'll let mom or dad cover them while stylist clips around them). And he got a good 5 minutes in before he started to get upset enough to be uncontrollable squirmy and a bit combative. That's when I pulled out the weighted blanket to lay across his lap and chest, and applied pressure across his shoulders while dad covered his ears. And I dare say we got the best cut he's gotten so far! It still wasn't without work and a bit of frustration on his part (and ours), but he never got to tears, and his haircut looks good! SUCCESS in our book!

Sleep (or rather, falling and staying asleep) has always been a big struggle as well. SPD often involves difficulty regulating arousal levels -- being oversensitive to sensory input means you go from mild to extremely overstimulated very quickly and have a hard time calming your nervous system back down. JoNo has never slept fully through the night and still comes to bed with us by around midnight most nights. He still wakes up another time or two, but at least we don't have to walk down the hall to comfort him back to sleep again, and we all fall asleep faster. We would never leave him to cry himself to sleep but we do wait when he first wakes to be sure he needs comfort to get back to sleep -- and only VERY rarely is he able to get back to sleep on his own. Instead, his cries for comfort escalate until he's hysterical or we've come to comfort him.

I can count on one hand the number of times he's slept past 1:00 without waking. Since we've been using the weighted blanket, he's had three nights (out of eight or so) that he's slept past midnight (twice until nearly 2:00 am and once until 3:30 am)! Obviously there's still a long way to go, but we'll take any progress we can get!

Wednesday, November 19, 2008

Rethinking Holiday Gifts

Now that we know more about JoNo's SPD, we're trying to plan his gifts to be both fun and helpful as a therapy tool this year. We've always tried to throw in some sort of a tactile toy anyway, but this year we're trying to include some movement toys that will help his vestibular system and motor planning. His birthday is this Saturday, and Christmas right around the corner, so we're loading up :) For tactile, we got him a feel-and-find game called What's In Ned's Head and some new tubs of playdoh for his stocking. For vestibular we picked out a Razor Jr. scooter that has three wheels instead of two (and a Hot Wheels helmet, of course). And Grandma is getting him a sit-and-spin to use indoors. And Grandpa from Virginia is combining his birthday and Christmas gift to get him a Smart Cycle: http://www.fisher-price.com/fp.aspx?st=10&e=smartcyclelanding

Of course, it's tough living in a condo -- how I wish we had a yard with a tree we could hang a swing from and build a treehouse in, a yard to put a trampoline in, and some space for him to run. *sigh* At least we don't have any neighbors downstairs -- that lets us do an indoor obstacle course without disturbing anyone below us. And we try to do lots of visits to the park and the play area at the mall (on rainy days), which are both pretty conveniently located.

Vision Eval Results

Good news -- it seems JoNo's vision works well enough. She did say that he has a little trouble tracking across midline (but can do it) and converging, but that it's not worse than she would expect at his age, so she's not worried about it yet. We'll be going back to see her every 6 months or so to keep an eye on it because she didn't completely rule out the possibility that he'll have trouble, but right now he's within the range of normal for his age. One less thing to worry about!

What that probably means is that his vestibular trouble is what's causing the problems we're seeing with using stairs and steering a trike (while we push), so we'll keep working on his vestibular system -- lots of movement and balancing and spinning and swinging and sliding (and horseback riding) for him!

Wednesday, November 12, 2008

Vision Evaluation

Tomorrow will be a busy day around here. I teach in the morning, and when I get home we'll leave immediately for an hour+ long drive to a vision therapy clinic to get a vision evaluation. Why drive so far to get his eyes checked, you ask? It's the only clinic our OT trusts to do the kind of evaluation he needs. Too many local optometrists send kids back to her saying "He's fine; vision is 20/20." And we know his vision is fine -- our question is how well his brain and eyes work together to access and interpret information.

At JoNo's initial OT evaluation, she was having a hard time getting his eyes to track across midline without turning his head to follow the object or sustain a converged gaze without breaking very quickly. If there are problems with his visual perception, it could affect his ability to learn to read (scanning a page from left to right), his depth perception (which could explain why he's so deliberate about taking stairs), and even his ability to run and walk without getting motion sick. Visual tracking is like the motion minimizer on a video camera -- it's what keeps your view of the world from bouncing around like crazy even though your eyes aren't remaining in one position completely. It could be that his entire world is always bouncing like an unsteady video camera.

We should know a bit more tomorrow, and it could mean they'll want to start vision therapy on top of his OT. We'll request a program that would allow us to do most of the work at home and at our OT sessions so we can make those long drives only once every several weeks (6 to 8) rather than every single week.

OT itself has been fun lately -- JoNo got to ride a horse on Monday! The OT has horses and a neat set-up for her therapy kids -- instead of a saddle (which diminishes the amount of the horse's movement that is felt, which doesn't do as much for vestibular processing and muscle development) the kids ride with just a thick blanket over the horse's back and these handles that strap on around the horse's belly. (And a helmet, of course.) We went down the road a block to this great woodsy trail with loads of movement -- and when Josiah got a bit skittish halfway through (he was probably nearing sensory overload from the amount of movement), I got to climb up there with him :) What fun for mom and kid together!

Monday, November 10, 2008

A Weighty Undertaking!

Yes, the idea of effectively nurturing a child with some special needs into a productive adulthood looms large in my mind. But that's not exactly the weighty undertaking I'm referring to here.

Lots of kids with SPD seem to be comforted by deep pressure -- it's a sensation their body can recognize, it settles them and makes them feel secure. So lots of parents use weighted items to help center their child, so we decided to try it with Josiah. One of the challenges he has is during "station time" at preschool, where all the kids are choosing their own learning activities, moving independently from station to station in what the preschool world refers to as "controlled chaos." Josiah, however, doesn't differentiate between controlled chaos and run-of-the-mill chaos -- his brain just senses chaos and quickly heats up toward sensory overload. We thought that perhaps giving him a weighted vest to wear during station time would help center him, make him feel secure and therefore more able to handle the huge sensory load of that time.

Purchasing one is exhorbitantly expensive. I'm certainly not opposed to spending money to help my child overcome a challenge -- unless, of course, I could do the task equally well myself for far less money. So began the task of creating a weighted vest he'd enjoy wearing. After much (way too much) searching at thrift shops and consignment stores, I finally found the perfect vest and set to work modifying it with the pockets for adding weight, which needs to be strategically situation across his shoulders, chest, and upper back, with some balast weight in the bottom, front and back, to keep the thing hanging properly. I had some scraps of a coordinating checked pattern to compliment the blue background of the vest and just the right color of thread to make the seams nearly invisible on the front of the vest. In relatively short order, the pockets were finished, ready for weights (in this case, bean bags made to just the right sizes for the pockets -- though I think I could have filled plastic sandwich bags with rice for nearly the same effect and a lot less work). The result is functional and adorable -- though Josiah doesn't seem all that keen on it just yet. I'll try it in a sensory overload situation (rather than just at home) and see if it feels more comforting to him then, and I'll also deliver it with him to preschool for them to try there.

And while I was at it, I thought I'd put together a weighted blanket. Staying asleep is a common problem for SPD kids -- their nervous system doesn't properly regulate their arousal levels, so they have trouble falling and staying asleep. Supposedly, weighted blankets help keep them asleep (or fall back to sleep quicker) by that same deep pressure sensation principle. The blankets are comparably exhorbitant in price (starting at $85 for a toddler sized blanket) -- so for $10 worth of weighted pellets from the doll making section of the craft store and some car-printed flannel I've been saving for just the right project, I crafted a fantastic weighted blanket that can grow with him!

In order to keep the weighted pellets from spreading to the outside, it was necessary to quilt the pellets in relatively evenly over the blanket. To do this, I stitched two sheets of fabric together, leaving the bottom open for adding weight. Before adding weight, I stitched several columns running the length of the blanket. I filled only the center half of the blanket, leaving the edges available for adding more weight later as he grows (the amount of weight needed in a blanket is determined roughly by the child's body weight, so as he grows, he'll need a heavier blanket). After putting a small amount of weight in each of the center few columns, I would stitch across, creating a few filled, quilted squares. Then I'd add a bit more weight to the same columns, again stitching across to create another row of quilted, filled squares; repeat this process for as many rows as are necessary (five, for this blanket so far).

So far, the blanket has been a far bigger success than the vest! I had been talking to Josiah about what I was doing, making him his own special blanket that would help him feel cozy. At bedtime the first night it was ready to use, I tucked him into bed as usual and then told him I'd give him his special blanket tonight. As soon as I layed it across him and let the weight settle gently along his body, he let out the most heavenly relaxed sigh and smiled a gentle contented smile. We read a few books and he fell asleep faster than ever, and stayed asleep about 90 minutes longer than normal before waking the first time. The few nights after that were met with slightly more limited success, but in all his sleep is moving in a positive direction. I knew I wouldn't sleep through the night after having a baby -- I just didn't realize it would go on quite this long. If this blanket helps him learn to sleep through the night, it will have been worth every stitch!

Here are a few pictures of my completed projects:

Thursday, November 6, 2008

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 JoNo. 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 (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 JoNo'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 JoNo. 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 JoNo 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 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 nurture him the way he needs to be nurtured. And more importantly, He knew what we need to learn and how we need to grow ourselves -- in growing up JoNo, he's growing us up, too.

And SPD is . . . ?

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.

JoNo'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 . . .

Jumping in . . .

We've finally had official confirmation from an Occupation Therapist that JoNo has Sensory Processing Disorder. So we're starting this blog to share our journey, just as much for our own benefit as for yours. What I know to be true is that marking where you've been gives you joy in reliving the good times and strength and courage through the hard times -- it's biblical and it works. Some of the things that have helped me lately are reading some of earlier journal entries and blogs about mothering, and as these new challenges change the face of my mothering experience, I want to record these steps as well.

For now, I'm trying to remain fairly anonymous, so that I feel free to share whatever is really on my heart, no matter how crazy or strange it might seem to others. And I'm still wrestling with being "labeled" so staying anonymous will help with that. Perhaps as I work through some of these issues, I'll feel comfortable revealing more about us, maybe not. I realize that posting my thoughts publicly like this makes me vulnerable to feedback I might not like, and I'm hoping I can trust those who care enough to read to make comments/questions/suggestions in a spirit of care and concern alone. I'd love to hear your thoughts and questions, and I hope you'll respect my family and our humanity as we'll respect yours.

Welcome to this journey of ours -- we're glad you're along for the ride!