What does Sensory Processing Disorder look like?
Today I'm completely frayed and I need to write about it in this journal. I really appreciate the kind comments and emails about the inspiration you find in my diary entries. It does my heart good to know that you too, see the snippets of beauty that I try to focus on. I'm very grateful for my life, but this diary doesn't give you the whole picture. And today I need to write about the grit. This is not a rant, this is not a complaint...it just is.
I don't remember how or who put the bug in my ear about sensory processing, but the more I read, the more bells went off. After reading more about it I felt that Satch should be evaluated. This was not an easy decision. I was confused and uncertain, but I also felt, that as his mother, it was my duty to find out what was going on as things were becoming more intense. And that is the best way I can summarize these 4 1/2 years...it's been"more" of everything and the only thing predictable about our days is that they are always unpredictable.
From the time Satch was born, I have been teetering with self-doubt. I kept wondering if I just didn't have this maternal instinct I'd heard about. I was wondering why I kept missing his cues. I kept muddling through motherhood reading as many books as I could trying to figure things out. Meanwhile I kept noticing certain characteristics that really stood out to me as they were not typical of what I had observed in other children. Yet, I couldn't put what I was feeling into words.
As an infant, Satch never gave me any of the hunger cues that babies do, like nuzzling the breast etc. I had to offer the breast every two hours and at any sign of fussiness. Though, he never really fussed, he was (and still is) very particular. My motto became, when in doubt, offer the boob. He wasn't a colicky baby. He almost never spit up. Satch hated to be swaddled. He hated his swing and hated his sling until he was strong enough to sit up in it. He became so distressed by tummy time that I had to discontinue it. He was not the kind of baby who happily sat on your lap sucking his fist or shaking a toy. Instead, it was as if he was hyper-present, very aware, following conversations, and observing his surroundings. Play had to be initiated - always - and I noticed that if I stopped playing, he would stop. He never crawled. He rolled, then walked.
Satch NEVER slept through the night and naps were sporadic, unpredictable and took great effort to induce. I had to watch for signs of sleepiness, and the times of which could vary from day to day. It seemed as though just as I began to see any sort of pattern forming, he would change things up on me. The only thing I knew for certain, was that the stroller helped and I put a lot of miles on those wheels in order to help my son sleep. He didn't sleep through the night until just before his THIRD birthday. He is now 4 1/2 yrs old and he wakes me up at least once during the night...by twisting my hair so hard that it hurts, by insisting that I roll this way or that. He does not like it when I cuddle him. He wakes me just to talk.
On a bad night, like a few nights ago, I could not even tell you how many times that he woke me up. I felt like a stone being skipped across a lake. Every time I would begin to sink into sleep, he would wake me up again. And when he finally went to sleep, I could not. I got up at 4 AM with a cup of coffee to take advantage of the moment of solitude. I was so tired that I felt ill. THEN suddenly Satch came creeping down the stairs. I lost it...I cried.
I don't come to this page so early in the morning because I WANT to. I'm up early because my body has become accustomed to being awake at this hour for the reasons stated above. I get up this early so that I can have an hour or so alone before the perpetual motion of the unpredictable day begins. It is then that I write my diary entries and remind myself that this time (no matter how stressful) is precious and fleeting. I remind myself that before I know it he'll be off to college and I will have more time than I will know what to do with. I also tell myself that this roller coaster ride will have to sort itself out sooner or later and in the meantime, I will keep asking questions, keep reading until I find an answer, a groove.
"Focus", I tell myself, "on the beautiful parts".
It seems to me that over the years a few things have gotten easier, but as a whole, many things have gotten a LOT harder. Satchel's toddlerhood (sleep habits notwithstanding) seemed rather mellow in some ways. People often commented on how calm and happy he appeared in spite of his (and my) lack of sleep. Yet, the older he gets the more wired he gets and now my son is unable to sit still during a meal. There are times when I cannot have a conversation with my husband at the table without interruption... and I'm not talking ordinary interruptions like interjections to add to the conversation, nor your average kidley questions. When Satch is having "a hard day", he will make noises every time one of us opens our mouth to speak. I've tried the talking stick. I've tried NVC, time-outs and time-ins, you name it. No form of consequence seems to help for any length of time. The only time I can talk to my husband uninterrupted is when Satch is asleep and frankly, I'm so exhausted at 8pm that I can rarely stay awake to creep back downstairs to talk about anything. I'm drained. Moreover, I never actually know what kind of a night it will be as they are as unpredictable as our days. I usually fall asleep before 9pm.
Within just the last few months I have been able to have a somewhat normal conversation on the phone with friends, but I have to be ready to abruptly end a conversation if needed if he's having "a hard day".
On "a hard day" if I attempt to start dinner before my husband comes home, he will often create distraction in the kitchen. He may crash repeatedly into the front door; try to swing on the refrigerator door; or run up and yank the hot oven door down and nearly burn himself. One evening was so insane, that I had to sit him on a chair in our very small kitchen as a consequence while I finished preparing the meal. Here, I should tell you that I have always kept a magnet board in the kitchen because I thought this might redirect his energy. I should also mention that we have a learning tower so that he can safely help with the prep. Sometimes, it's a lovely experience, but often he gets distracted or goes into over drive and it becomes stressful. I'm still trying to figure out which kitchen activities interest him, which is soothing to him, and which turns him into the Tasmanian Devil. The only thing I know for certain, is that cookie dough is a safe bet, though he will not roll it or play with it. He'll only cut the cookies. He doesn't like getting his hands sticky, that is clear.
In his early years, Satch seemed to enjoy baths, but somewhere in the course of a year something shifted. He would scream so loudly when it was time to wash his hair that I thought for certain someone would phone the police - and I've never once got soap in my son's eye and keep a dry hand towel nearby, because he freaks out over the tiniest drop of water that may roll down his face. I've tried everything, toys, tub flutes, tub crayons, foam creatures, foamerator, and even shaving cream. It's all hit or miss depending on his mood. There was one stretch during the summer where he actually wanted a bath and asked for it. I seized the opportunity hoping that this anti-bath phase had passed, but it seemed that this new bath-love was a phase and we are once again back to bath-loathe. Within the last few months, he finally stopped the screaming, but there is almost always resistance mixed with some sort of drama during bath time. He's bathed 2-3 times per week - even so I have been conditioned to dread it.
Haircuts? Out of the question. He insists on having his hair long, which is fine with us, but he has to be convinced i.e. bribed with a lolly to have it trimmed away from his eyes. We've even tried funky pirate headbands to keep the hair out of his face. We feel that he has the right to rock his own style. In fact, as soon as he was able to reach, we allowed him to choose clothing. That is how we learned our son's preferences for color, textures, and toys even before he could speak. We're totally cool with supporting his personal style, but I have now learned that it is avoidance. Brushing his hair a/o trimming nails can be an effort depending on his mood.
Satch is a picky eater. While he is adventurous in trying new foods, it is questionable on any given day what I may be able to get him to eat. And we all know that one can not thrive on pizza and mac n' cheese. Anything green is almost always out of the question unless it's a pickle or a cucumber, but anything covered in cheese or onions is usually a safe bet. He doesn't seem to get thirsty so we must remind him to drink and offer a variety of options besides water in an effort to get him to drink. We look for organic fruit/vegetable juices with a low sugar content. He is unable to sit still during the meal. In a restaurant, he's all over the booth or will try to lean across the table top, and sometimes he'll continually hang or go under the table. We keep a bag full of wonderful portable toys in our car to keep him amused when we go out to eat, but it is not about being bored...he is physically unable to sit still. He immediately takes off his shoes, even in the restaurant.
Satch didn't like bibs and became an extraordinarily neat eater very early and this really stood out to me because little ones love getting messy and that's all good. So, I made a habit of playing with finger paints very early and encouraging him to get messy. This backfired and the next thing I knew, he was picking up dog poop outside, and once a half dead bee which subsequently stung him. It was as if he was unable to decipher what was touchable and what was not. Now at 4 1/2 he's got that part figured out, but when engaged in messy play, he will insist on changing his clothes the moment he notices a speck on them. If he drops something on himself while eating, he often wants to change. "I don't like STAINS", he says. This makes for lots of laundry. I should add, that as a visual artist, I have paint on most everything I own so I'm not uptight about such things. Once during an afternoon at the stream, he slipped and got mud all over his bottom. He freaked and wanted to go home. He actually asked, if we could walk to a nearby friend's house to borrow a clean pair of pants. I had to convince him to continue to explore and play, assuring him that he could change his clothes when we returned.
He has an aversion to old, worn clothes like my nubby fleece and faux fur vests that I wear around the house when I'm cold, he often hides them so that I'm unable to locate them. His mantra is, "Dada's sweatshirt 'what' has the string pieces on the edges is ugly!"
My son takes off his shoes and socks the instant he's in the house, even if his feet turn white from cold. Tags are removed from clothing and most recently, wash cloths. I couldn't figure out why he wasn't at all interested in Taggies when he was a wee babe, NOW I get it. The coat zipper can not be pulled all the way up; the top button must remain unfastened - or it "chokes" him and he "can't breathe". Hats are tolerated, but often "too tight". Scarves are tolerated, but often "too tight - can't breathe". He has never tolerated a blanket so he wears footed fleece pajamas in the winter or bump up the heat up a notch. If you've been reading my journal for some time you may recall the color coded thermometer. That is how desperate I was (and still am) to have have a drama free season change.
We don't have a lot of rules in our family and try to reserve no's for that which can hurt him or others. That is not to say we are permissive. Yet, even with all this freedom and regard for his feelings and individuality, it felt as though Satch was going through, and I cringe to write this phrase, "terrible twos" at 4 years old.
While moody is not a term I like to employ, I refer to my son as passionate, I believe moody is how some people would describe my son - perhaps even moody-deluxe. The bottom line is that my son is just a bit "more" of everything because for him, the world is more...more loud, more bright, more sticky, more tight, etc. I try to have a sense of humor about it all and have been known to quote that line from the film, Spinal Tap, "this goes to eleven". Yet, it is this more-ness that makes him both exquisite and exhausting, delightful and depleting...it's because, he goes to eleven.
People often ask me,"is he always so on the go". Ummm...YES! - from the time his eyes open until the time they close, he is in motion. And though he gave up his unpredictable naps a long time ago, I still insist on "quiet time" for one hour every day. He watches a movie on the sofa. I catch my breath and think. And what I think about is this...all this...everything...on one continuous loop! And when I get up before the birds, I try to write about our days in a way that will reflect the magical moments and not the melt downs because when I print my blog into yearly diaries, I want my son to look back on these journals and remember his childhood warmly. I don't want him to remember it as a struggle.
For quite some time, I've been conferring with friends and family in an attempt to figure this all out. My gut feeling was telling me all along that something was different. That it was if Satch was not always able to read body language, facial expressions and verbal cues in the way that others do, that he misses some signals. Yet, I kept doubting my gut feeling because it just didn't make sense to me that Satch could be unable to read certain cues yet was already reading simple sentences? This feeling of confusion and helplessness has left me feeling like I totally suck at motherhood. I've been feeling overwhelmed, frustrated and exhausted! That is, until now.
Satch completed his evaluation with an occupation therapist last week and demonstrated high markers in the area of sensory defensiveness, low tone in the trunk and some auditory processing issues. NOW everything is beginning to make sense...the constant movement, hanging, leaning on me to the point that it's painful; the lack of sleep; sensitivity to socks, shoes, tags, touch (he does not like hugs from anyone other than his father and me). His visual perception is advanced for his age. His sense of smell is also heightened. I guess this explains how he was able to correctly identify the owner of a hat left behind at our solstice party because, he said, "it smells like her head". It ALL makes sense!
The part of Satchel's nervous system that processes specific input about the world around him is developing at a slower rate than is typical for his age and that is why he is behaving the way that he is. Intellectually, he's very bright, but in certain sensory areas, he responds more like a two year old. It is not because he is a "difficult" child, though I would not say that being his mother is easy, by any means. I have lost my patience, raised my voice and even sobbed on more than one occasion. He behaves this way because he needs a little help smoothing things out and I'm determined to see that he gets what he needs.
While the veil of confusion had been lifted, it still left me with a few questions. Why? Did something happen at birth? What did I do wrong? What did I not do that I should have? Why?
I learned as babies, we all learn about the world around through our senses. We all grow at different rates and this includes sensory processing. I learned that there is a large genetic component. I learned that many adults have some mild form of sensory issue, but the difference is that today we know more about the physiology of the brain and there are specific therapies that can help restore some balance and help with integration. Most importantly, I learned that it was nothing I did or didn't do, and that it just IS...and that I may actually have some sort of motherly intuition after all:
I know my son. I know his likes, dislikes, and interests. I know that on vacation I need to prepare some crafts and activities to engage him the same way I do at home. I know that I must bring certain toys. I know that the Fall weather brings many challenges. I know that certain textures bother him. I know that he has some difficulty sleeping. I know what sets him off. Most importantly, I know that my son is a passionate, creative, playful, intelligent, witty person and he is not simply acting-out. He is trying to be.
During this new year, we will be hopping a bus cross town twice a week for the next 9-12 months so that Satch can receive occupational therapy. This is in addition to the other mommy-and-me-classes that he enjoys. Therefore, I have decided that I will only be writing here in my journal on Mondays and Wednesdays. I have kept a journal for nearly half my life and I realize that talking to myself on this page (and to you) has been a very big part of my own self care as it helps me to feel grounded. However, I will be unable to commit to writing four days per week and I think that this is the only way I can meet the needs of my family as well as my own. This is what feels right for me at the moment.
*For more information about SPD, click here and here.
I will return on Wednesday with a really swell tutorial for Charlie & Lola lovin' kidlets.
Most Alive Monday will resume next week.