Sensational Family

sometimes we grieve

2012-02-08T10:48:00.001-08:00

I dreamt last night about visiting a zoo with Simon and myaunt, uncle, and their young daughter. We met up with a large group from Swapand Play, and progressed through the animals, an arcade, and some groupactivities in various rooms. Through it all, the kids were exuberant and distracted,but direct-able, and happy to join in the songs and games. All the kids, thatis, except for Simon. We struggled to get him in to his headphones in the noisyarcade, and he yelled and crashed around. In the middle of a song with hand andbody motions, he bumped himself into or came very close to the other kidsbefore jerking back. He poked, bolted, and wandered. And I cried. Theexperience wasn’t real, it was just a dream, but the tears were real. It was amoment of grief when noticing how different and difficult my son is, for the challengeordinary trips are, and for him, never quite enjoying the things other kids do.(It was also a bit of pride, showing off how great Swap is to my belovedrelatives, but that’s another thing entirely.)

As we gather information for kindergarten and slowlyintroduce the idea to Simon, I’m overwhelmed with sadness that it’s just notgoing to be easy. My son won’t walk into a classroom the same way I did: happy,eager, well-behaved, and timid. I don’t know what he’ll feel, if it will beexciting or scary or not a big deal, but I know it won’t be easy. That’s sad andfrustrating, but hopefully only for a few days and maybe a few dreams. Grievingis necessary, but I’m looking forward to moving on, to feeling determined,hopeful, and prepared. We’ll talk to his early intervention teacher, friendswith experience, and eventually his IEP team, working out a plan we think willwork for our son. And it might. And it might not. And either way we’ll be okay.For today though, I’ll just feel a little sad that it’s different anddifficult.

A family diagnosed together stays together

2012-02-01T14:30:00.000-08:00

Though it's terribly obvious I have sensory issues, if not out and out SPD myself, it's not something that adults really get added to their medical records. What I have just had added to my chart is Fibromyalgia. Another disorder that isn't 'testable' or 'cureable' in the traditional medical sense, that many, pros and non, believe is just an excuse, and that very well may be due to a problem with your brain processes sensory input.

One researcher (Robert M. Bennett MD, FRCP) actually describe the problem of Fibro as: The problem is: disordered sensory processing. A physician, researching fibromyalgia, very deliberately called it a problem of disordered sensory processing. The idea is that the parts of our nervous systems that feel pain and the parts that tell the brain that to experience pain get disordered. So ordinary sensation becomes pain, and pain becomes unbearable and chronic. For Dr. Bennett's distillation (but no dumbed down) of the idea, check out http://fmaware.org/PageServerccdf.html?pagename=fibromyalgia_science.

If this theory of fibromyalgia is accurate, how connected is it to SPD? Is it untreated SPD, all grown up? If that's true, how would it respond to some of the sensory diet/occupational therapy type treatments we give to our SPD kids? Is it too late to re-order our processing systems, or to get a response from sensory management techniques? One of the few known treatments to get fibro pain and fatigue under control is non-aerobic, low impact, exercise. Things like yoga, tai chi, resistance training, and water therapy, along with a healthy diet, avoiding stimulants, and doing everything possible to get enough sleep. With this, we're told, the condition won't go away, but it will be manageable. Biomarkers are being mapped to get a better understanding of the genetic component, with consideration of environmental factors and chemical additives in the diet.

Does this sound familiar to anyone else? Are our (mostly female) kids destined to grow out of SPD and into Fibromyalgia? Can we avoid it if they are treated young and well? Does it affect men more than we know, or in a different way? Like getting a new SPD diagnosis and like the clinicians trying to study and treat fibromyalgia, I have a few tiny facts and a ton of huge questions. Like getting Simon's SPD diagnosis, it's important to consider the questions, but also allow a time to grieve, to be angry and sad, and to shift focus to the forward action. For Simon's sensory issues, for my sensory issues, and for this chronic pain issue, the most important question needs to be: what do we do now?

The Big Kid Event Success

2012-01-15T00:49:00.000-08:00

Swap-N-Play, the fabulous sharing and playing space in our neighborhood, had it's third year and hosted a massive birthday party to celebrate. Simon spends a lot of time there; it's his substitute for the socialization of preschool and a big, well stocked place to get his home occupational therapy. Usually, when he goes, it's during a mellow time, when most kids are in school.

This, though, was an EVENT. Swappers, past and present, were showing up in droves, potluck food, excited kids, and rainbow clothes in tow. Every room, even the often calm library, was full of kids, the nap room converted to a photo booth. As Simon shouted to us during the night "people are running everywhere!"

And through it all, Simon participated, talked to kids, and truly had fun. This four year old has had major improvements in dealing with children recently, and with that, a lot of food, his headphones, and a plan, we had a good night.

We started this morning when we were writing his daily list on his dry erase board. "Make Coffee," I wrote, because I can't do anything else with him until I'm caffeinated, and he likes to help. "Breakfast, vitamins, brush teeth, playtime," we continued. I wrote lunch and quite time, then paused. I told him we had something to do that afternoon, and explained the party. He was excited, as any four year old would be about throwing things and eating cake, until I told him the plan. Every so often, every fifteen minutes or so, we'd go find a quiet place and take a break. He was distressed, but when it came down to the choice between going with breaks or staying home, he accepted the breaks. "Swap N Play Birthday Party," I wrote, and in parenthesis, "with breaks."

Fifteen or so minutes after we arrived, I told him it was time for a break. He whined a little, not wanting to stop and not wanting to head down the dim hallway, but once we were sitting down there, he let me squeeze him and give him "hand hugs," and he willingly pressed hard against the wall with his feet and hands. At my instruction, he bolted to the trampoline and jumped the prescribed twenty times.

The second break Simon whined some more when I told him he had to wear his headphones, but his growing self-awareness must have kicked in, and he put them on and did what I asked. He took them off after his 20 jumps on the trampoline and carried them in my hand, just in case. "Just in case" came when the music started. Simon bolted into the middle of the circle, dancing his wild dance in front of all the politely, properly seated children. I pulled him aside and put my hands by his eyes like blinders, told him he had to stay on the carpet square. He jumped from one to another getting too close to the woman's guitar, and I offered him his headphones. He declined. I offered again, he accepted.

He still wiggled, he grabbed my hands when I tried to follow the snow dance motions, while the other kids and parents danced along as directed. But he stayed on his carpet circle. Until he asked to take them off, when he jumped into the middle again and screamed when everyone lifted wiggling fingers into the air. The rest of the night went by with breaks, headphones, cheese, and cake. Simon kept his headphones on, almost completely willingly, and he ran, dodging kids and sliding in front of adults.

We left, shortly after cake, and aside from a brief tussle over brushing teeth, he kindly and happily went to bed, with far less whining, kicking, hitting, and screaming, than usual. I'm exhausted, I didn't talk to anyone all night, and barely enjoyed my cake, but this night was a wonderful, exciting, fabulous, success. The list, the effort, the OT, the intervention, the money, the stress, the exhaustion - all of it - was proven worth it tonight. My son had a good night at a big event full of kids, and that is truly worth it all.

In which I am convinced my son is not actually autistic

2012-01-06T11:00:00.001-08:00

“Hello.How old are you?” has become Simon’s standard greeting for other kids aroundhis size. What’s remarkable about this is that Simon has a standard greetingfor kids. My son, who stood with arms out when any child approached him duringan evaluation, greets kids in an effort to truly connect and play.

Forme, it’s just further confirmation that his issues are not autism, but reallytruly solely sensory. He didn’t hold hishand out in defense because he didn’t want to play with another kid, because hecouldn’t read them, or didn’t know how to interact. He held his hand out indefense because the gym was busy, loud, and bright. Any more sensory input froma child talking, touching, or even being too close to his body would have been overwhelming.

AsSimon has matured and we’ve learned how to help him cope with and avoid sensoryoverload, his mind and emotions have calmed enough to let his charming littlesocial self come through. With the immediate press of input aside, his mind hasthe capacity to practice talking to kids, saying hello, waiting for a response,and responding back. He got a boy he’d never seen in a playground in Californiato talk to him, tell him his age, and start to play a game. My sappy self got alittle weepy seeing my boy instigate a friendship.

Ofcourse, he still yells, and he even kicked a kid for the first time recently,when the boy bumped with something on a day Simon couldn’t take any more input,but day to day, overall, he’s changing and progressing socially as his sensoryissues are managed and begin to resolve within his little neurological system.

Yes,it’s delayed, and yes, it may not be the most common method of saying hello,but I find a lot of victory in that little “how old are you.”

The sensational meltdown of a sensory mom

2012-01-06T10:42:00.001-08:00

Theend of November and beginning of December were a difficult time for me. Withwork stress, special-needs kid stress, financial stress, and the stress of someserious problems of a few really dear friends, my body started to shut down. I’vealways believed that I have a particularly strong emotion-body connection, andit makes sense with the overall sensitivity issues of SPD. My brain is wiredsuch that I feel everything more than most other people.

Mygeneral body pain ratcheted up to an unbearable level. I visited a few doctorsa few times in a month, I stopped sleeping well because of the paindisturbance, and my fatigue increased as my sleep went to pieces and pain suckedmy energy dry. I fell asleep on the bus. I fell asleep at the dinner table. Ileft my husband, who had been home all day with Simon, had made us dinner, andhad to begin his own work, to get our cranky son to bed after dinner as I slumpedunder the covers. I started throwing up a few times a week for no physicalreason. My emotions shut my body down.

Then,we went to the beach. A wonderful colleague of mine owns a gorgeous beach houseactually on the beach in Manzanita, and generously let us stay there at nocharge during a weekend the house didn’t rent. We took off as soon as we couldafter work on a Friday and spent the entire weekend lounging, letting Simonwatch TV while we slept in, and delighting in our son’s extra-sensory joy of thecoast.

My pain decreased to baseline and I feltrested for the first time in months. I stayed up long enough to spend time withmy own spouse and had enough energy to enjoy it. I didn’t get sick or feel evenremotely nauseated. We walked slowly across the sand, with fresh air,unseasonably warm weather and blue skies giving all three of us consistent,calm, refreshing sensory input. This weekend in mid December gave me everythingI needed to get a break from the crush of stress that shut me down physically. I’mstill tired and in pain, but I have a little kick of energy and hope enough topress on in my own sensitivities and difficulties to find a real plan orresolution. Perhaps someday soon I’ll even stay awake for the entire bus rideto work.

Simon copes

2011-12-01T11:31:00.001-08:00

Sometimes atext message makes me teary, like when I get a note that Simon just put his ownshoes on. He willingly tried and successfully put on his own shoes. I alsoheard after being picked up from work that he told another young boy that heplays with at Swap that he didn’t want to play with any other kids right now.He came up with and those words to tell another child what he needed. NeitherBob nor Mark, the early intervention teacher, suggested it. It was all his own.

After a bitof whining about traffic in the car, we arrived at Hopworks, busy, full of kidsHopworks, for dinner. I was worried that after doing so well at Swap and comingstraight to dinner afterward, he would be angry, aggressive and difficult.

Instead, hesweetly asked for help to play with the train table, knowing he needed a momentof parent presence to get comfortable. I returned to our table after a minute,leaving Simon to put some trains in their places. A few minutes later, ayounger boy, maybe late 2/early 3 came over. He reached over and took thetrains right out of Simon’s hands. I braced myself, ready to jump up and stopSimon from hitting, throwing, screaming, or whatever he might do after havinghis trains taken. He didn’t do anything. Simon looked over that boy withdistress limply hit one hand on the train table, and sat down, heartbroken. Ijust sat for a moment, staring, until it clicked that my son didn’t needintervention to stop bad behavior of his own, but he needed to be comfortedafter having it done to him.

The nightwent on, Simon ate well, played with toys, and remained patient, happy, andproper. A much younger girl had two cars and Simon wanted one, so he asked herfor one. Being 1 ½ or 2, she didn’t respond. Simon came over to me, explainedwhat happened, and said “can you help me think of how to ask her?” Incredible.

You could seeover the course of the loud and interactive dinner that he was wearing down,that the noise and activity were getting to him. He didn’t talk quite as much,he got less broad with his play, starting to run the trains in a circle, leaninga bit to watch as the wheels spun down the tracks. His eyes got wider and hestarted watching things from the corners of his eyes. He was narrowing his focus, doing what he could to tune out the sensory onslaught. He needed to be changed near the end of the evening,and with the monstrously loud dryers in the bathroom, he put his headphones on.He left them on for ten or so minutes after we returned to the dining room. Heusually takes them off as we let him, so it was obvious he appreciated the littlesensory break.

We ran intoan old friend as we were leaving, and it was obvious Simon was done and wouldn’tbe able to say hi or even accept a hello from someone else. But that was fine,he had been verbal, controlled his body, his volume and emotion despite loadsof kids and some tense moments. Even has yelled and ran away from a greeting, Iwas immensely proud of the day he had, of the way he coped.

Slow Parenting

2011-11-18T08:00:00.000-08:00

There is a trend happening as the pendulum swings back fromhyper-involvement, over-scheduling, “helicopter” parenting to a slower paced,less hands on, over-scheduling, “helicopter” parenting to a slower paced, lesshands on, free-wheeling type. As a parent of a hypersensitive SPD child, we’regetting slow parenting down to a science. Simon can usually only handle one thinga day. One trip the park and the rest of the day at home. Morning at home,lunch with a friend, rest of the day at home. Recently I was hoping to havedinner out with the three of us, but Simon had his play/therapy/earlyintervention appointment at Swap that day. We had dinner at home.

We’ve learned the hard, meltdown way that we just can’t takehim from one event or place to another. Sometimes if he has a good diet and aquiet time that’s actually quiet, he can manage something new afterwards. Butonly sometimes. It’s an adjustment, though I never thought of myself as a veryactive, out of the house type of person, when you can’t go grocery shopping becauseyou were playing with friends in the morning, you realize how much you actually do in a day. It’sdisappointing at times, to skip out on something you want to do because yourlittle one can’t take it, but in some ways I appreciate it. We enjoy spendingtime playing board games, watching Simon watch the wheels spin as he pulls histrains, or spelling words on the old laptop. Needing to stay home for thewell-being of your son is a good motivator, it keeps us close, slow, and cozy.I don’t want him isolated, of course, and he needs to be gently prodded attimes. But as the super-genius developmental pediatrician presented, even if achild can grow out their sensory issues, if they are not dealt with well, itleave behind anxiety, sometimes anxiety disorder.

So we rest at home after a morning out, or spend a morningout when the afternoon will takes us out the home, and while sometimes I haveto miss out on something, I love those times we have at home.

The Sweetness of SPD

2011-11-17T15:19:00.001-08:00

Simon’s smile is incredible as he stares, mooney-eyed, athis new toy cat. It’s called Soft Kitty and he loves that. When the evaluators askedhim to explain how the ladybug in a picture feels (looking for an emotion) hegladly, sweetly, says that it feels soft. How is your blanket? we ask him. Soft,he replies, his voice quiet and gentle. “Ahhhhhhh,” he says, “ohhhhhh,” as hesnuggles his kitty, burrows into his eight blankets, or puts on new sweatpants.He wants to read books by the cozy fire, read books by his cozy bed, and have acozy family snuggle. This boy loves soft things with a gentle passion.

Simon likes everything to be happy. He plugs his ears when acharacter in a story is distressed. The faces he draws with his wobbly grip areall happy faces, regardless of the expression they seem to take. When a personis hurt or a child cries, he finds us and frets until all is well again.

I never thought I’d see a kid be thankful about getting anew pack of diapers, but one evening when I brought some home, he said, “oh thankyou mommy,” and he meant it deeply. He is grateful when we fill his water cup,when we play with him, and when someone sends him a card. He asked me recentlyif I would play in his room with him, and when I answered that I would afterfinishing my food, he said, “oh thank you mommy, you’re the best mommy in theall the world.” I would have played with Simon until midnight after that. Hetells me he loves me and this morning even said he always loves me. He enjoysgetting us things and is proud to tell me when I get home from work that theymade dinner for me.

Personality doesn’t stem only from sensory issues, ofcourse, but I do know that sensitivity transfers to emotional sensitivity, atleast in my son and I. When not in the midst of anxiety or a meltdown, he istender, caring, and loving. I would never wish SPD on my son, but I would neverwant to lose his sweetness and the depth of good feeling he gets from positivesensory input. Life without SPD might be a lot easier, but life with SPD can bevery rich, meaningful, and sweet.

A challenging development

2011-11-07T12:44:00.001-08:00

We're having a tough week. I have several bruises, a headache, and a sore nose from Simon's outbursts. The stack of books on top of our dryer is teetering, he's had so many removed after throwing them at me. Our ears have been ringing from screeching, door slamming, and shouting.

It's not entirely clear why he is so on edge right now, but it may be at least partly related to new mental development. He's been reading more, and trying to read new words he hasn't memorized. He did pronounce cedar as keh-dar, but I was still really impressed. He's been using his trains to add and subtract, counting, coupling, and uncoupling, and staring to know that ten minus four is six, without needing to count. I've seen him read a whole book that he'd never seen before, and read it all correctly.

He's had a few bursts of social development, asking me to wear bear ears while we were playing, and miracle of miracles, he really, truly played with another kid. I didn't get to see it, but bob told me about the conversation he had with a girl at Swap n play. They talked about trains and buffers, played with trains together, and headed to the big kid room, Simon responding to her question about where his mom was with, "she works every day, but daddy stays home with me." not only an answer to her question, but additional information not asked for.

But then, he's also been repeating the same script from a Thomas story every time he plays with his trains at home, his little mind locked in to an infinite loop of cars uncoupling and running an engine off the rails. He's been shouting at us to be quiet when we compliment him, pounding his fist on us when we won't give him what he wants, and slamming himself on doors and us for reasons unclear.

Without knowing why he's losing his mind, except that big developmental leaps always mess with the poor kid, it's hard to know what to do to help. We can do what we can to manage the issues, sticking to a schedule, keeping noises down, lots of protein, lots of sleep or rest time, intentional music, and heavy work, and hope that this will help him regulate until things improve. It's hard though, not being able to fix it. We're tired and battered, and are out of space for confiscated toys.

- Posted using BlogPress from my iPad

The way I smell the world

2011-11-02T10:40:00.000-07:00

It smells like soap until four steps away from the bathroom door. Cooked dust takes over. Another few steps, old diaper. Simon hasn't been changed yet this morning. These bagels always smell a little like fish as they're toasting. The clothes are clean, the laundry room doesn't smell like moist cloth anymore, now it smells like dirty concrete. Coffee. Sweat. Earwax. Earwax? I need a q-tip.

On my way to the bustop, it's cold and clear, it smells like leaves. It's lovely. Around the corner, and it's gasoline. I pass the man who I see every morning, try not to inhale as I pass. His cologne is strong, I smell it all along the sidewalk he walked on.

Old smoke on the bus, apple scented shampoo, or hairspray. Powdered make up. A dusty paperback. Someone needs to wash the food and sweat out of their jacket.

This - this is only one of the external senses in about fifteen minutes of my day. Most people either can't smell some of these things, or the smell registers with their nervous system below awareness, is disregarded, and never noticed. Young kids with SPD experience this but don't understand it, don't know how it affects their level of stress, of awareness, of irritability, their focus, or appetite.

Touch and sound have always seemed to be the biggest problems for myself and Simon, but as I learn more about SPD and focus more on how we get through each day, I've seen that smells have a huge impact as well. It makes sense, smell affects taste and memory in strong ways for everyone, SPD or not, why wouldn't impact our sensory selves as well? If nothing else, it would still be exhausting to smell, register, and try to manually dismiss every one of these smells. Smell is not an unknown sense like vestibular, proprioceptive, and interocpetion, but it may be a forgotten or overlooked sense in terms of the affect it has on ourselves and our SPD Kids.

Simon's Perfect Day

2011-11-02T09:58:00.001-07:00

Simon was brilliant yesterday. He woke up after a long night of sleep in a good mood. As I was getting ready for work he said "mommy, do you know what? I love you." He gave me a hug. He thanked me sincerely for changing his diaper. At work I got a fabulous chat from Bob: Simon was playing with a girl at swap. He was having a conversation with her about trains, about me being at work, and then they sat down in the library and read a book together. This, folks, is nearly miraculous. Bob said he was great all day.

I got home from work and was racing around the outside of the house, telling us how his body needed a rest, and running again. He got his water when he was thirsty and ran again when he was ready. He was in tune and taking care of his own body.

We had a family hug, and he leaned in close to us both then voluntarily, unasked, kissed us both. Later on we were roughhousing and I forced him to let me kiss his cheeks. He didn't tell me to stop, just giggled, and then kissed my arms and cheeks.On his own motivation.

After dinner, he cleaned up with not even a single whine, and under his own direction. At bathtime, he put his ears in the water, getting part of his hair and face wet. I wrapped him tightly in his towel and he sat, compressed, in front of the fire for a long while before he asked for a book to read.

I tucked Simon in under all eight of his blankets, and instead of shoving my face away, he gently asked me not to kiss him, and told me it scared him when I kissed him while he's laying down. Simon understood and explained his sensory defensiveness to a calm way. I turned off the lights and closed his door, and he was asleep in minutes.

This, on the heels of halloween, after switching OTs and missing an appointment. This is what we're working for, these perfectly normal days. Of course it won't be like this every day, or maybe even often, and wouldn't without any sensory issues, but when things are especially hard, or I really don't want to put on my exaggerated happy face to get him to pick up a train, it will be good to remember that we're making progress, that sometimes, we'll have a really good day.

The problem of hair

2011-10-24T13:27:00.000-07:00

Simon's hair was getting a little out of control. Even if you're going for a spiky sort of hair style, that's not where it should stick up. It's hard for Simon to get his hair cut. One of his most touch sensitive areas is his head, and as I'm not remotely a hair stylist, I have to touch his head a lot for a long time to get this done. Every little hair that falls on his neck or face bothers him, and he pulls away from my touch, the comb, and the scissors. It's hard to get a single decent snip on a kid with sensory defensiveness.

I turned on a show for him, hoping the distraction would be enough. I got it done eventually, but it could have gone better. He won't let us brush him anymore, but I could have made some game out of compression. He loves being wrapped tightly, arms down, in a towel, and there are lots of other ways to get that pressure that he might enjoy. Ah well, something to keep in mind for early spring when I get the nerve and need to try again.

Batman isn't fun for kids or grownups

2011-10-18T12:25:00.000-07:00

Monday afternoon was mildly busy at our neighborhood indoorplay area, not chaotic, but noisy and full of 2-3 year olds darting about.Simon spent a good amount of time at the train table, as he typically does, andI sat, rocking, spacing out, until a couple of the younger boys ended up nearthe train table and had a few loud, tense moments. I couldn’t see the tablefrom where I was sitting, or I probably would have stayed put, but knowingSimon’s difficulty with noise and kids, I headed over to be sure he didn’t beansomeone with a train. One boy dressed as batman kept snatching trains from theother little one, who would proceed to wail until Batman handed it back, atwhich point he instructed the aggrieved party to say “thank you Batman.” Simonkept a wary eye on them and kept moving his trains around the tracks untilBatman moved on and took a train from Simon.

He froze. He didn’t say anything or move for a moment, and Ifroze too, waiting to see if he would hit, grab, scream, or turn away, lettingBatman have the train. He just held his hand out, and Batman obliging handedhim the train back. “Thank you.” Simon told him, and the other boy correctedhim, saying “Say thank you BATMAN. You have to say thank you Batman.” Simon,not being one for pretending, costumes, or superheroes, paused with a painedlook, then said “thank you” again. “NO, say thank you Batman!” Batman insisted. He wasgetting louder and closer to Simon’s body, so I stepped in explained to Simon whatthe little boy wanted. He did it, but he didn’t like it.

We moved around, playing in the quiet play room, the big kidroom, and eventually back to the train table. There were several kids there,and he didn’t like trying to play around them. Simon stood near the table,trying to decide whether to stick it out or find another place to play, whenBatman ran up. “You’re a superhero too!” He shouted. Simon’s eyes got biggerand his body stiffened. “We have to save people. Let’s go save people!” Heyelled, inches from Simon’s face, and – terror of terrors for my son – pulledon his arm.

Simon sobbed. Not a meltdown sort of scream or yell, not ashout or a whine that are typical of him. He really, truly cried. I held myarms out and he ran over to me. I think he might have said “he hurt me” as he smashedhis face into my shoulder, but it was too muffled to be sure. He stayed therefor a long time, holding tightly to my body and snotting my sleeve. After sometime he calmed down and went back to the empty big kid room to play, and spentthe rest of the day asking why the boy pretended to be Batman, how it wasn’tfun for him, and it wasn’t fun to kids or grownups.

Carseat Driver

2011-10-13T13:30:00.001-07:00

“Ohdear! The signal light is RED!” Simon shouts from his car seat.

“Daddy,daddy, you have to slow DOOWWWWNNN!”

“Ohno, there’s traffic ahead.”

“Lookout! A signal light! Stop! You have to stop!”

Drivingwith Simon is an extreme test of patience, with comments every fewintersections about the traffic, the signs, the other cars, the need to speedup, the need to slow down. “Simon,” we tell him, “it’s okay, we’re going theright speed. We see that stop sign. We know how to drive.” He carries on.

“Lookout! That car is stopping!” I shout at Bob, then clap my hand over my mouth. “I’msorry, I’m so sorry. I don’t mean to do it.” I see where Simon gets it from. Myson and I are anxious people, and there is little so terrifying as riding in acar. It’s not Bob’s fault, he doesn’t speed, forget signal lights, or makesudden turns or swerves. It’s just us, our anxiety, and likely, our touchy,often confused nervous systems.

Iused to wonder why I reacted so much more than other passengers to sudden dipsin the road; why “stomach flipped” when others barely noticed. Now I know it’sprobably my hyperactive vestibular sense, an overreaction to the shift ingravity. Toss in a wonky proprioceptive system, the sense that tells you whereyou are in space and how your body is moving, and the average shifts in speed,lane location, and road grade become a mini-roller coaster, particularly in theback seat, where even neurotypical folks feel a difference.

Simon’sexclamations and overreactions are in part because of my bad example, in partbecause of the constant accidents in that dratted Thomas the Tank Engine show,and partly because he can’t understand yet that what he senses isn’t a trueindication of what’s actually happening. I thought it was mostly me and theshow, until I sat next to him on a ride into work this morning.

Simon’slittle hands never sat still while we were in the car. He picked at his noseand in his nose. He pushed his blanket through his fingers and between hisfingers. He picked at the little bit that’s left of the felt dinosaur on hisblanket’s edge. He smelled his blanket. He sucked, chewed, bit, and even lickedhis pacifier. When I asked him to take it out of his mouth to talk, he held itinches away from his face. He leaned forward, leaned back. Forward and back.This is not the behavior of a child at ease. We’re fortunate to have anextremely verbal SPD kid, and he explains his anxious movement with his frequent,grating complaints about our driving.

Ifwe can convince him to wear headphones in the car, get him a weighted vest orlap blanket, and stock up on fidgets to keep in the car, I hope it can easesome of his tension. Not only for our sake, so that our little back seat driverpipes down, but for his as well. It’s sad thinking about a little four yearold, over ten years away from a learner’s permit, being so consumed with fearabout riding in a car.

We hate making mistakes

2011-10-10T13:42:00.001-07:00

After we finally got the smoke alarm to turn off, I made Bob go upstairs to get the parchment paper that would let the cookies bake properly. I was so mortified by mistake, I wouldn't go up there all night. It took awhile to even eat one of the non-smoked cookies.

I won't order some types of of food or use words I've only read because I'm terrified of pronouncing something wrong. I don't try to play baseball with Simon lest someone see how terrible I am.

Simon makes a few snips with scissors, then tosses them across the room because he needs help getting them on his hand again. He knocks over a game piece because he didn't understand who's turn it was. He won't try to write his name anymore, because he can't get his letters to look right.

He seems to be so upset by making mistakes that he screams, hits, or throws when we congratulate him for doing something well, as if it's a reminder that usually he fails.

The theory is that people with SPD struggle with accepting mistakes in part because we are so used to having things be difficult. We have a baseline of frustration, failure, and embarrassment, seeing others easily do new things while we struggle. One goal of occupational therapy is to create a new experience of small steps and successes, helping set up a new expectation. Another effort we make is to praise the effort, not the result, even when he is successful. Otherwise "good job trying" becomes another way to say you didn't succeed.

My own fear of mistakes might limit my spoken vocabulary and menu options, but I've had enough success and manageable failures to get to a place where I can try and learn when it really matters. My hope for Simon is that with the right encouragement, he can grow to be a confident person, knowing he'll get things wrong and struggle, but pressing on regardless.

In the meantime, I'll try not to lose my mind when he screams at me for telling him "well done."

The joys of hyper-sensitivity

2011-10-05T15:35:00.000-07:00

My son and I both let out the same deep sigh of contentment as the gas fireplace kicked on and the dry warmth reached us. We stared with the same intense concentration at the flames' flickering. When we both broke away to pick up the story we'd gone over there to read, we agreed happily that the fire was incredibly cozy, that it felt very good, and that we really liked it.

What would be a lovely, cozy experience to many was completely consuming to us, our senses loaded with positive input. And what may become common place to many was just as wonderful and intense the next night. And the night after.

With our nervous systems taking in more sensation than neurotypical folks, we're often easily overwhelmed, over excited, agitated, scared, or angry. Sometimes, though, the extra intensity is a blessing.

That super soft micro fleece blanket feels even softer to us than it might to you. And without the proper neurological connections to habituate to sensations easily and quickly, we get to experience it as if for the first time many times.

I've noticed this scarf I'm wearing right now about every 15 minutes. It is soft and gently warm, and every time I feel it again as if I just put it on. If it weren't for the little fuzz in my sock, the truck backing up outside, the hum of lights, computers, and heating fans, I'd be incredibly comfortable.

Tonight, if Simon can avoid a bedtime meltdown, we'll be back in front of the flames, reveling in our over sensitive brains, absorbing every second of the flicker, the drone, and the heat.

Halloween is truly terrifying

2011-10-03T14:12:00.001-07:00

Last year on October 31st I did something awful to my son. I put him in a costume. He didn't want to, but it was Halloween, and we had the cutest lion outfit, and I figured he'd get over it. It got worse. We were invited to join the large group of neighborhood preschoolers and toddlers in their trick or treat adventure, and the amusing tradition of reverse trick or treating, where the adults hand out beer to the adults handing out candy.

We had never heard of sensory processing disorder at that point, and didn't know that the sight of all those kids, especially kids in costume, and the unpredictable volume of 20 excited fairies and monsters.

I didn't make him keep the hood up, and he hung back from the large group, heading to the door as the last kid left. He did okay, happy about getting candy, and only breaking down when the group shouted trick or treat for a camera.

This year, though, we're talking about Halloween, what happens, what is fun, and letting him decide if he wants to take part. So far, he has said no, and despite my own love of trick or treating, I won't ever force him again.

To specturm, or not to spectrum?

2011-09-30T10:49:00.000-07:00

Our little family has been busy lately, getting set up with new services, being sick, working, and being social. Simon in particular has made huge strides in his little social life. With the supportive encouragement from Bob, he has made 'friends' each time he's gone out into kid inhabited places. There was Zephyr and Elliot who he shared cars with at visits to Swap and Play, Scout at the Train table, and a girl he joined on the swings and played hide and seek with at the park.

His verbal contribution to the interactions have been brief, but they have been appropriate and real. I've sadly only heard about it second hand, but I did get to see him make friends with adults when he stopped by my office. He had a back and forth conversation of 5 or 6 exchanges. He said hi, acknowledged non-verbally that he had been told hi back, waited his turn, then asked how old my office mate was. She laughed and said you're not supposed to ask a lady that, and he laughed too. She asked how old he was, he responded, she commented on his height, he responded.

It's a small conversation even our 2 year old neighbor could have, but for Simon, it is a big step. It's advances like these that make me wonder if his somewhat autistic behavior is a normal delay, or a delay that's in response to sensory overload and anxiety about what sort of sensory onslaught might come with a new experience.

The autistic/not autistic question has been on and off our minds since Simon was very little, long before our evaluations and SPD diagnosis. If he has diagnosable autism, it's mild, or high-functioning, in the language of the spectrum. If has is autistic, his SPD is a part of it, and treating that as we are is still the proper course of action. The difference a spectrum diagnosis might make is how we handle the social/behavioral issues. If he doesn't interact only because of sensory issues, we continue to help him cope and habituate with sensory issues. If it's autism, we do that and do whatever therapy it is you do for socially challenged autistic kids. We may do those things anyway, at this time, because the school district has him in the moderately autistic category to receive services. We're meeting our interventionist, Mark the Teacher, at Swap this Monday to see what direction we might take. After some time with Simon, I think he'd be useful to ask his opinion about any benefit to seeking an official clinical diagnosis to add to our SPD, Fine Motor Delay, and Developmental Coordination Disorder diagnoses. If we're getting what we need, and will continue to get what we need, why bother? If there is more Simon needs, we'll seek it out.

For now, I'll just savor every minute of saying greeting and interacting with his darling little peers.

We need to buy this kid some marbles

2011-09-21T08:40:00.000-07:00

Simon got out marbles at my dad's house again yesterday. This time he was instructed to keep them off the floor, and in a large plastic serving bowl. He seemed confused, heading toward grumpy, because all he wanted and knew to do with the little things is send them flying across the floor.

A quick look at the situation and I had an idea to try and avert the potential meltdown from Simon not getting what he wanted. I got out a marble and sent it whirring along the inside of the bowl. It circled around and around. And around. And around. It eventually lost steam and settled on the bottom of the floor. We were transfixed. Our visual processors were in full swing, but with just one thing to focus on, one marble rolling it's way around the sides of the bowl, it was pleasant and not overwhelming. There was no question where to look, just fast, constant, unchanging, engaging movement.

It got a little tricky when Simon wanted to do it himself, he couldn't quite get the speed and angle right to get the marbles running on the bowl, but he did get it enough to satisfy him. We tried several marbles at once, and starting off with a still marble and moving the bowl to get it going. A little moment of pushing at the proprioceptive difficulties, helping him focus on the feeling of the motion required to get the marble going, and a lot of visual pay off. There are occupational therapy opportunities everywhere, if I have the energy and focus to get actively involved in helping my son play.

A shocking hug

2011-09-19T14:24:00.001-07:00

Week two of early intervention services started with Simon bounding for the door and flinging himself into a hug with the teacher. My son, who declines nearly all hugs, who pulls away when touched, launched himself into a hug. I'd say we found a good match.

Later in the hour, Simon did jerk away when Mark touched his shoulder to get his attention. Like me, I'm sure he'll always dislike unexpected touch, but today he didn't yell or hit in response. I'll take that improvement with rejoicing.

Success seem to come in bursts, with Simon having a conversation with a kid in the park one week, and abandoning a play area when a little girl joins in the next. All the usual factors play in, hunger, energy level, noise and action, but I think it's a typical pattern of developing too. I also hold on to that phrase from one of the SPD books: inconstancy is one of the hallmarks of SPD.

We don't pretend in this house

2011-09-13T08:34:00.000-07:00

Yesterday we had our first session with our Multnomah County Early Intervention. The teacher assigned to Simon came over to our house as he will every Monday for the school year. Simon rejoiced at having a new adult give him all his attention, and they got right into playing the Cranium baseball game we have. The game has little base runner pieces to move across the bases. Mark, the teacher, got familiar with how Simon operates the game, then made the base runner "talk."

Simon yelled at him and threw himself on the floor. Simon doesn't really pretend, but I had no idea he'd react that way to someone else doing it. Mark tried a few more times to get Simon to accept the players chatting, and later a train. He asked Simon if it was okay for him to pretend, and Simon replied with a very firm no.

I've noticed before that Simon doesn't like us to make his animals or other things talk, but it didn't really register how much it bothers him. We can make his kitty meow as long as we have breath, but it does not speak. Even when we talk to real animals, like the dogs at home, Simon usually says, "dogs don't talk," or "dogs don't answer."

It makes me wonder what specifically it is about pretending that bothers him. I assume it's that it seems 'wrong' to him, that game pieces are just pieces, that trains only repeat what has happened in a book or a tv show, and blocks certainly cannot drive like cars. This is not the way Simon knows the world to function, and for it to be suggested must be scary or unnerving in some way.

I also wonder if it's something he can learn, or if he'll always act this way, and how it will affect him. Will his lack of pretend play change how he learns, or how much he can learn? Will have a long term impact on his ability to form relationships, or solve problems. Or will it simply mean that Simon will always name his kitties Kitty and his engines Engine?

Running away with fingers in your ears

2011-09-09T14:37:00.000-07:00

Simon was well worn out yesterday. Good for bedtime, but not so much for pre-bedtime. Simon and I ended up locked out, so we went upstairs to grab an extra key. The upstairs buddies and visiting buddies seemed to be well worn out too, needing snacks and the little one crying for water. It was a lot of noise and activity and emotion in one kitchen. Simon plugged his ears and bolted for the door.

When we were safely outside I stopped him and told him that he did a great job, and that was the perfect thing to do. It's not a behavior I would have thought deserved praise and encouragement without parenting a son like mine. His mind must have been completely overloaded with the loud kid voices, the sight of several kids and adults in quick action, the heat, and the all the emotion in the room. My tired little Simon held it together long enough to get out and didn't screech, yell, hit, kick, or throw a thing. He helped himself cope by blocking some noise and got out of the situation at his own direction.

As Simon gets older and continues with occupational therapy, other services, and is gently worked into social settings, I hope that he will eventually not need to cope and bolt, that he will have the skills to enjoy company for a time. I was always content as a kid to play alone, and sort of hoped that Simon would too. It would mean less heartache for him as he runs into the challenges he'll have with making friends. He's just now starting to talk about "friends," about other kids coming to play with him, and I really hope he's able to develop the social skills he needs to allow it to happen. You just don't make friends by yelling or running away from them.

Sensory Beginnings

2011-09-07T15:51:00.000-07:00

Tactile defensiveness started early for Simon. As an infant, he would sometimes cry until we stopped touching him, and nearly everyone that held him after a few months of life commented on his stiff back. Someone even told me it was like holding a cute 2x4.

It took him a long time to sit up, I always thought it was simply because he didn't have the weight or girth to hold up his length and big head. Now that I know about the vestibular and proprioceptive senses, and what happens if they don't function quite as they should, I know that could be part of it too. I have an idea of why he might have been wailing for hours most days, one possible piece of the nursing difficulties, and why he would only sleep in a room all by himself, with blackout shades, and white noise.

Before my darling beast was even born he was overreacting to sensations. He routinely kicked the stethoscope off my belly when the doctor tried to listen to his heartbeat. Bob and I sat down for an opera, and he NEVER stopped moving. Not once. For the several hours we were there.

As much as I love the quote, "the plural of anecdote is not data," it's hard not to take Simon's early months and years as solid proof that sensory processing disorder is something you're born with, and something that shows up from the beginning. It could be that my son and the few people I've heard similar stories from are the minority, though I doubt it. I don't have a good resource for my own very early childhood, so I may never know how much of a sensory infant I was, but just as I see a little bit of Simon's possible future in my own adult sensory world, I think I can see a little of my sensory past in his young life.

I hope that the awareness efforts make headway into having SPD better recognized, funded, and researched, so we can all point to the data to show that our kids aren't coddled, undisciplined, or poorly raised, but they are truly born this way. That we can back up the data with our sad and funny anecdotes, instead of relying only on those. I love data for it's own sake, but with this, it's personal, it's my child's future access to resources, to tools and understanding.

For now though, I'll just let the plural of anecdote be anecdotes, and tell all the stories and share all the photos that help people understand his little sensory life.

Sensory dieting

2011-08-31T21:00:00.000-07:00

Treatment is about more than coping, and realistically you can't have occupational therapy every day. The term used for bringing OT home is Sensory Diet. They don't mean diet in the lose ten dress sizes in a week magazine cover sort of way, but the traditional description of what you consume way. In this case, what you consume are sensory activities. Each person with SPD experiences it differently, so each sensory diet is unique to your needs. To help with Simon's fine motor, he uses tongs and kid chopsticks to pick up little things and is encouraged to crawl through tunnels to move his four limbs together. We use a therapeutic brush on his skin every day, and sing and listen to music when we don't need him focused. Muffling headphones are coping. Music is therapy.

We need to ramp up our intentional sensory dieting at home with Simon, and while I think about what we should do with him, I think about what sort of sensory diet I might benefit from. I'm an adult now, and the experience of living to this point has done a lot, though in a more abrupt and damaging way than careful therapy will for sensory kids. Could brushing help my aversion to light touch, and panicked or pained response to touch on my upper arms? Or would swimming help, or would it serve a coping role? Will heavy work, lifting, carrying, pushing, pulling calm and center my nervous system and let me meet the day with more sensory peace?

There isn't much, if any, research into SPD in adults, so it will be trial and error if I have the energy to be intentional about it, or observation and recording if not. Maybe as we work out Simon's diet, I can sneak in a game or activity myself, and the two of us can work it out side by side.

an intro to us

2011-08-30T15:16:00.000-07:00

I wrote this for a the SPD Bloggers network, most personal readers know all this, but I like to share!

My newly minted four year old son has (primarily hypersensitive) Sensory Processing Disorder. So do I. I got along well enough as a kid, and no one really knew about SPD, so I shambled through. Simon was diagnosed at about 3 and a half, is in occupational therapy, and is starting services with our county’s early intervention program.

In many ways having both of us have similar types of SPD is helpful. Primarily that I KNOW what he’s feeling because I feel it too. It doesn’t take any effort to see the world through the lens of sensory overload because that’s how I experience the world too. It’s less hurtful when my boy doesn’t want to give me a hug; I recoil from hugs and pats and encouraging arm touches as much as he does. We’re both a little extra clumsy and a lot extra sensitive to sound and smell. Both of us pointed out the mess my husband’s shoes made on the floor, and grumpily shut dresser drawers that are ajar. Being an adult now, I can help give him the language he needs to tell people what he needs, what he doesn’t like, and how it’s affecting him. And as we educate ourselves about SPD for the sake of our son, I learn about myself as well.

Simon has better motor control than I do, and so far it seems his muscle tone is better as well. It’s wonderful to learn for myself though that I’m not always being lazy, sometimes I truly am too tired to stand up straight, pick up the house, or lift my very weighty child. (Though sometimes I am fabulously lazy.) It also helps to know that sometimes when he says he’s too tired to walk or pick up his toys, he may be telling the truth and not just trying to get out something. It’d be much harder for me to accept that if I didn’t feel the same way.

The difficulty of it comes from both of us reacting to the same things. Recently he bumped his limbs into things repeatedly, something that causes no harm but, if he’s like me, truly hurts more than it would other people. My sound and touch we’re over the limit though, and his whiney voice and clingy touching pushed me over the edge. I pushed him gently back, told him harshly he was fine, and get off me. I felt bad, but just the same as he was truly hurt, I was truly unable to handle the feeling and sound. As an adult and a parent, I need even more to develop ways to cope or grit my way through until I have a moment to take care of my own sensory needs, but as a person with untreated SPD, sometimes I just can’t. I hope that as my son grows up, and we talk about SPD, he’ll understand that I have challenges just like him, and can forgive my unacceptable reactions as we’ll forgive his, and work together toward appropriate responses. It may be a difficult balance, how much to model, how much to parent, how much to be a peer in learning about our SPD, but like our sensory diets, quirks, and needs, our little sensory family will figure it out together.

an unfortunate dental memory

2011-08-26T07:58:00.000-07:00

Looking back on my life through the lens of Sensory Processing Disorder makes sense of a lot of odd behaviors and incidents. I can’t remember how old I was when this happened, it must have been late elementary school or early jr. high, because my adult set of teeth were still growing in, and all my teeth came in early. One of my baby teeth had refused to fall out, and was just shoved forward by the permanent one growing in behind. The baby tooth was dead and hollow, and when my mouth had bled, the tooth was stained translucent pink. It had to come out.

I don’t know why I went to the dentist by myself, maybe I insisted, or something came up, or my parents didn’t think they needed to be there. None of us knew what oral defensiveness was, or that it was the reason I was such a picky eater, or what it would do to me at the dentist that morning.

I had done fine at the dentist previously, gagging on x-ray tabs and grimacing, clutching, and bracing for the cleanings, but I’d been lucky, and had never needed anything except a cleaning until then. It never occurred to me that they might need to numb my mouth, and I may not have even known how it is they do it.

I checked myself in, calmly walked to the room, and melted in to the chair. The strange dentist smell sort of pleasant, the gentle hum of equipment motors soothing, and shutting my eyes against the overhead lights, I was sleepy and content. I don’t remember what exactly happened next, but I know the dentist never got that needle anywhere near the inside of my mouth, I was sobbing, he was exasperated and probably confused, and I walked home, tooth intact, sniffling and shaking.

The tooth crumbled away, one little piece at a time, over the next few months. Years later, when I had to get my wisdom teeth pulled, I was given a sedative and managed to get it done. I was sobbing then, but at least I cried with my mouth open.

There are a lot of things we could have done to make the procedure happen if we had known, and while I can’t go back and help little me, I can help little Simon. We haven’t been to the dentist yet, but now that he’s four, we really need to make the effort. Financially, we’re stuck going to a managed care sort of dentist not known for gentle or accommodating staff. It’s unfortunate, but I’ll do everything I can to make arrangements that will make it easier for him. Being a sensory kid without having a clue what it means was difficult, and makes the understanding we have now that much better. We know how to help Simon, and that makes all the difference.

The wonder of noise-muffling headphones

2011-08-24T12:15:00.000-07:00

I have the wonderful luck of being moved into a new office downtown this week. Bob and Simon met me outside today and we went to get lunch. Neither of us realized that it was so hot, and that the food carts we wanted to visit were quite so far. Simon had woken up early, didn't have water, and had been out in the heat and noise of traffic for over ten minutes.

Overstimulated is too gentle a phrase for the poor kid's condition at that moment. Bob had him running up and down the block, tapping things, and it kept him from a meltdown until I got outside. He tossed himself on the ground when we said it was time to go, but we got a few steps away and he picked himself and chased after us. We kept him moving by sending him to tap each 3 he could find on the parking meters and made it to the food carts. I don't do well in the heat, so I mostly spaced on Simon while I tried to decide what I wanted. He sat down the cement. He stood up. He sat down again. Up again. He stuck his hands in a box of spoons. He stuck his hands in a box of forks. He pushed a large metal siding and made it bump into some other people. I finally stopped repeating "Simon" in a horrible exasperated voice and asked him to read the numbers on a tire. He did it shifting back and forth on his feet.

I ordered and sat us down on a little bench nearby. Bob brought him an horchata, and 3/4 of it was gone in about a minute. I told him he had to wear his sunglasses and headphones or I'd take the drink away. He let me put them on despite his protests.

Suddenly all was right with the world. My charming son sat patiently while we waited for our various orders to be filled, sipping horchata. We got up to stand in the shade and wait for my food, and he just stood there, content to read a few words at a distance. I told him once to move over for someone and he listened right away, no complaints or wiggling right back after moving a few inches. If ever there were a "magic wand" for my SPD kid, it would be those noise muffling headphones. I didn't realize until after we got them what sound really does to him. It's not just that it sounds too loud and painful, it sends his entire body into overdrive. His limbs become poking, jabbing, kicking things he truly cannot control. So we make him wear his headphones even when he doesn't want them, and it's instant relief for all three of us. And probably that poor lady that got whacked by the swinging wall.

Essential Language

2011-08-23T15:59:00.000-07:00

I haven't spent enough time with other new four year olds, particularly those with SPD, to know if Simon's level of awareness is any more or less than others, but I do know that we have the good fortune of having an especially verbal kid. The majority of what he says comes from books, tv shows, daily events, or scripts we've taught him, he doesn't often come up with things on his own. (except while singing, but that's a whole different wonder.)

The fabulous thing for us is that he uses those scripts he's picked up to accurately talk about how he's feeling and what he needs. When he appreciated something I did for him, he told me I was a very useful mommy (Thomas the Tank Engine) and when he's exasperated, he'll say "bother," just like Winnie the Pooh.

Not only does he have the language he needs, he can tell when he needs it. We had a wonderful night on Saturday, leaving Simon in a group child care setting. When we returned after four hours, they said he did well, didn't need anything from his bag o' sensory tricks, and told them a few times that it was getting too loud. The helped him find a quiet spot, he read books, and returned to playing when he was ready. He knew before he had a meltdown, needed to scream, or run or crash, and told someone who could help. He also told me that night, as he was struggling to sleep, that "that long time made it hard for my body to sleep." I hope that as he gets older and as he learns more ways to calm down, he can be even more in tune with how the wold affects him, what he needs, and how to express it.

Losing our marbles

2011-08-19T08:50:00.001-07:00

We're very fortunate to have tons of family close by, and loving, supportive family that gets SPD and wants to learn more. Last night we had dinner, a pre-birthday dessert, and a wild bout of marble rolling.

Simon hangs out at my dad's house when Bob isn't able to stay with him during the day, so he knows the house and it's contents. He asked for marbles, and he and the fabulous Lori sat and rolled them ALL across the floor. It was sensational, in all the ways we use that word. The sound of 100 or so marbles rolling across a wood floor was incredible. Simon laughed and yelped and jumped, stimulated by the sight and sound. It was hypnotic and soothing for me, a pleasant, soft persistent sound. I wonder if "marbles rolling on wood floor" will ever make it onto a white noise ap? I'd even pay for that one.

The game was silly, wild fun for Simon, and in a free flowing environment, it fed his senses and engaged him. After all the sugar and stimulation, I expected him to be out of control, but he did keep it together long enough to help pick up the marbles. I know that he wouldn't have been able to sit still after that sort of thing, and it may be an interesting hint at what his challenges might be in a school environment. What if the kids paint with marbles, then need to sit down for a story, or to do little math stuff? Would a teacher be willing or able to change the order for one kid, and end the day with the rousing activity? This exact scenario may never come up, but similar things will. I can only prepare and educate the best I can, and enjoy every moment we have when it doesn't so much matter how much rolling marbles might make him lose his.

Best laid plans

2011-08-18T11:24:00.000-07:00

We all have our parenting plans and ideals before our kids are born, and we all find out that even the best laid plans can be shoved aside when our babies and kids don't behave as we expected. This is probably especially true for parents with kids with special needs, particularly complicated disorders like ADHD, ADS, and SPD. Our kids look normal and act normal a lot of the time. A lot of our parenting plans can still work, at least most of the time. Some things though, they're just different.

The first of our big changes, or "give-ins" happened when Simon was newborn. We gave him a pacifier. I was opposed, though at this point I can't fathom why. He was a wailer, and hard to comfort. We had no clue about SPD then and just needed something to calm our squalling darling. Pacifiers worked. And now, at four years old, it still works.

The other is electronics. Simon watches a lot of TV. Not too much, and not every day, but a lot. Kid shows give him a window into how the world behaves in a safe way that doesn't terrify him or overload his senses. The only pretending he does at this point is to act out things from Thomas or the plays he sees in baseball games. And I'm okay with that. It's a start.

He also plays with our iPhones a lot. After reading this great post http://www.spdbloggernetwork.com/2011/08/10/angry-vindicating-game-changing-birds/ on the SPD blogger network, I even stopped feeling so guilty about it. Simon does tons of stuff outside of video games, and they give him a chance to practice visual integration and fine motor skills. After watching a ton of Sesame Street clips on you tube for a few days, he started singing, and even making him up his own songs about things going on around him. It gives him another socially acceptable way to process life. Wonderful. And sometimes it's soothing and calming in some way I don't understand.

Last night Simon and I sat together on the bed, playing free cell on my iPad. I told him which cards to move where, and he patiently, slowly, got them over there. He didn't scream in frustration when he couldn't get one, and even thought on his own to try using his other hand. And he cuddled. That stiff, shoving, crashing, child melted into my side as we moved our stacks of cards on the screen. If it takes free cell to get that bonding with my son, we'll play free cell every day, video-game guilt be damned.

Frakenstien arms

2011-08-16T12:43:00.000-07:00

I took my tired son to lunch with a friend he hadn't met before, who has a baby, a creature that Simon shies away from with distrust. Friend and baby were lovely, and Simon held it together and engaged a little. After food we strolled a bit and ended up at the park. We all paused for a minute and tossed a fidget around until Simon ran off for a drink of water. He spotted a hole after drinking and started poking around. All very typical, until a boy walked over to him, hand held out, palm cupped, obviously trying to show Simon something. I was far enough away that I couldn't see it or hear what either said, but Simon's body language was unmistakable.

He stood up and held his back stiffly, arms stiff and horizontal, with floppy hands. I call this "Frankenstein arms," but to Simon all it means is terror. He held his arms out, backing away, until the boy realized he wasn't getting anywhere and walked away. Simon went silently back to get another drink of water.

The boy came up to him again, and, probably because he was standing, he seemed to listen for a moment and look at whatever it was the kid had. A few seconds was all Simon could handle, and stiffly, quickly, walked back to me. The boy followed, and I overheard him as got closer, telling Simon about someone that passed away, and that his dad told him she would always love him.

At another point they were both on the play structure, the boy howling, Simon shouting "STOP THAT NOISE!," and the boy trying to say it was just his wolf sound.

I felt crushed for both of the boys. The other looked to be about 6 or so, and wouldn't have known that my giant wasn't even quite 4 yet. Here was this kid, trying to play, trying to process death, and being met with a wall of oddity. And there is Simon, sort of wanting to play, but mostly wanting to get away from the threat of a loud voice or a touch.

We walked Friend and Baby back to their car, and I asked Simon if he had enough energy to say goodbye. He said no, he was too worn out, but maybe next time. It was a small verbal victory after a stressful interaction, and leaves me feeling hopeful and proud along with being sad.

The Other Senses

2011-08-12T15:34:00.000-07:00

Proprioception: In your joints and muscles, responsible for pressure in and out – like throwing a ball, receiving a hug, and using a pencil.

Vestibular: Your sense of balance, of where your body is positioned in space – like lying down, turning upside down, jumping and climbing high off the ground.

Interoceoption: The internal sense, responsible for knowing you are hungry, feel sick or have to use the restroom.(hello late potty training!)

SPD includes 8 senses in it's definitions and diagnostic tools and treatments. We all know the first 5, but the final three are internal and "hidden" and I hadn't heard of them until we started learning about this disorder. I still don't know a ton about them, these senses seem to be the least affected for Simon, so it hasn't been a large issue. Sometimes Simon is terrified he's going to fall off a changing table (vestibular) or has a really off day with throwing and catching (proprioception.) But for the most part, he doesn't struggle with those.

But boy did I and do still. I'm sure most people I know have heard me say that I'm clumsy, or seen it's affects as I bump into doorframes, open doors into myself, knock things over, and generally stumble about. The only athletic success I had was playing defense in soccer. There I was praised for getting hit with the ball. Softball? That was a disaster.

Also, I can be pretty darn lazy. Sometimes it is very legitimately lazy, and others it's another effect of proprioceptive dysfunction, something referred to in other texts as low muscle tone. It's not that I'm necessarily weak (though I am that too, I admit), but primarily that my nervous system doesn't always know how to use the strength my body does have.

Proprioceptive disorder can also explain some of Simon's poor motor planning, also known as dyspraxia, though it's probably all mixed up with this auditory and visual difficulties as well.

Another possibility with Simon is that he is undersensitive to his proprioceptive sense, even as he's so oversensitive to the rest. Being undersensitive sends kids into overdrive, seeking out intense stimulation for their senses, because it takes so much to feel anything at all. Simon is a crasher, a banger, and a jumper. He can swing for 45 minutes and not get woozy, or dizzy, his stomach doesn't 'flip-flip,' he has a really hard time stopping himself from slamming into the door or us, or sliding hard across the kitchen floor.

Every person with SPD will experience it differently, and it will be different for the same person on different days and stages of life. It's one of the special challenges of diagnosis, treatment, and coping.

A minor disaster at Director Park

2011-08-11T09:24:00.001-07:00

I had another funny food craving yesterday, being hit with a sudden need to eat salad with beans and corn, and pizza. Bob had a brilliant idea to bring along my desired salad and meet me at the pizza schmizza window downtown. We could have a picnic in the square!

The new Director Park is a few steps closer and has tables, so we went over there. Simon did pretty well through dinner, he ate, he only got out of his seat a few times, taking off after a pigeon, and he came back within a reasonable amount of time after we told him to. The trouble started when he wanted to get in the fountain. His swim stuff wasn't in his bag, and the extra clothes in there were dirty. I told him he could get wet, but he didn't have dry clothes. He probably didn't truly understand, and waded in.

Simon was already tired. It was downtown around 5, so it was loud and busy. He had used a lot of his emotional and physical energy to hold it together during dinner. I should have expected it, made him sit with his headphones to give him a break before he went in, taken him out of sight of the water to explain how to act in the fountain. But I'd just gotten done with a busy day of work. I was tired and warm and distracted by the crowds myself. So we just helped him out of his shirt and shoes and sent him in.

Within minutes he had splashed at a kid and a parent. Bob waded over to tell him to stop. He did it again. And again. I walked over to remind not to, but he wouldn't come near me. I was still in work clothes, so I had to send Bob in after him. He carried Simon out dripping and angry.

We sat him down and tried to tell him he had to stop, or we'd leave, but we didn't get the words out. Simon screamed. Screamed as loud and long and high as his little body would let him. And then he did it again. and again. There's nothing to do but wait it out when he does that. If you speak, he screams more, if you touch him, he screams more and lashes out. It was only four shrieks in the midst of a loud and busy downtown square, but if felt like the world stopped and those screams were all that existed. I try not to be embarrassed, if other people think we're bad parents of have an undisciplined child, so be it. They don't know us and I'll probably never see them again.

We carted him off and got him in the car, and he was calm for the drive home. My own senses had me on the verge of self-destructing at that point, my emotions raw, and everything in me had run dry. It was mild, as far as meltdowns go, but it took everything I had left.

I should have expected it. He was tired, this was out of the ordinary, a break in the routine. He didn't have the proper clothes with him, and wet khaki shorts feel bad on anyone. We're new to this though, and even seasoned parents will make mistakes sometimes. And now it's more clear than before, 'fun' things will not be fun if Simon isn't up to handling it. Sometimes it's not obvious before hand how he'll handle something, but this - this I should have expected. We won't be able to do everything we want, or everything that a family with typical kids can do. It makes me sad sometimes, angry at others, and even though I know it could be much harder, it doesn't help in the moment when our son is being hauled away from something we all really wanted to do.

When SPD is adorable

2011-08-09T15:52:00.000-07:00

The way Simon's brain responds to what he sees is different than most people. His vision may be fine (we haven't had it checked, but it seems completely normal), but the signals get crossed somewhere after the initial seeing.

He does this funny eye thing, pointing his eyes to one side, as far as they can go, and turning his head the other way. He also loves to watch things spin. He always has, and while it seemed a normal obsession as a one year old, it's not quite so normal as a preschooler. This issue is mild, he can focus on the larger picture of toys with wheels when encouraged, and he does drive cars about and notice them as a whole now. But he still loves to watch wheels spin. I love the intense focus he gives them sometimes, as he is in this picture, laying on the floor and watching only the train wheels as he moves them along the track.

complexity and inconsistency

2011-08-09T11:16:00.000-07:00

One of the difficulties of SPD is explaining SPD. I try to tell people about what it is and how it affects Simon, and usually hear about someone else that feels the same way or deals with the same thing, or have the issue dismissed, saying that all kids do that, or so and so did that, or they don't see him do that. The thing is, I can't explain EVERY issue he deals with, how it affects him, and when it affects him. One of the markers of SPD is it's complexity. There are a lot of ways your nervous system interacts with all eight of the senses they include in SPD, and each issue can affect a kid, or not, and can cause and under OR over sensitivity. And it can be inconsistent. Simon might be fine with play dough one day, and refuse to touch it the next. He loves to swim, but hates when he gets water on his clothes in any other context.

I know no one is malicious about being dismissive, they want to help, to reassure me that Simon is okay. I know he's okay, but he DOES have SPD. Dismissing it doesn't help. Understanding it does. I know Simon is okay, but that doesn't mean he doesn't need help. Knowing what his challenges are will help him be more okay.

I need to learn how to explain it better so I can advocate better for Simon. I suppose as I understand the disorder myself I can explain it better.

One thing that has been easy for us to see is how sound affects Simon. He is more sensitive to loud sounds, but it's more than that. Sound distracts him. He hears everything, and unlike most people, he notices everything he hears. He loves music, and music is good for him. But if there is music playing when he's supposed to do something else, he can't focus on it. Everyone can be distracted by music, but for Simon it's more than simple distraction. His brain cannot process the sound and something else at the same time. He can NOT tune it out, even if he wanted to or knew he should.

It's complicated, at least it seems so to me, at this early stage of diagnosis and early treatment.

Sensory Simon

2011-08-05T12:48:00.000-07:00

I haven't written anything in a long time. Mostly because of FB, really. But I want to talk about Simon and sensory processing disorder. And me and sensory processing disorder. And it's much easier to go on and on without annoying folks on a blog than it is on Facebook.

So. Sensory Processing Disorder.Simon has it. So do I. I haven't been officially diagnosed, but it's obvious. Looking back on my life, at the odd things I did and said, it's obvious. And while it's much too late for 'early intervention' to help a grown up like me, it helps just knowing why I feel and respond the way I do. It also helps knowing that most people DON'T feel the way I do. That dirty faucet handle that I think is the worst, most disgusting, crusty, slimy, untouchable thing in the world? It probably feels normal to most people. The background noise that makes it hard for me to pick out words someone speaks, or the inability to recall what the person I just spoke to looked or sounded like? People don't have those problems. Or they do, but not to this degree, and it might be the only one, instead of one of many.

Sometime in fifth grade I was walking home from school and noticed a stream of water running down a curb into the gutter. The street was full of little piles of sediment, sending the water into little patterns, moving and changing as it went on it's way. It was captivating. Hypnotizing. It fed some visual-processing part of my brain in a way that left me completely unaware of the rest of my surroundings. After some time a neighbor walked by and asked me what I was doing staring at a police car for so long. The look on her face was part concern, but disgust. I was mortified. I had no idea there was a police car inches from me. All I saw was the water. I had no idea I'd been staring for a long time, and I had absolutely no idea that staring at water running by the tires of a cop car would be so socially unacceptable. I had no way to explain what was going on. I couldn't tell her I was so overwhelmed by the visual stimulation that I noticed nothing else. I couldn't tell her how powerfully the running patterns affected nervous system, or how relieving it was to see that, only that, and understand and enjoy it. So I blushed until it burned, mumbled something about the water, and walked home, crying. I want to go back to little me and the neighbor and tell us both that it's okay, it's not shameful, it's not weird or bad or wrong, it's just SPD. A gentle reminder to continue home would break the spell and I could walk on satisfied.

The benefit of my own painful moments are understanding. I KNOW what Simon feels, I see why he shoves my face when I try to kiss his cheek and how consumingly great it feels to bury his head in his blanket and smell deeply. And now that we have the gift of knowing what SPD is we can take him to his beloved Occupational Therapist and help him desensitize and learn to cope when it has the most impact. We can teach him scripts to get along in social situations he'll never intuitively understand, and provide coping tools to get through the parts of life that will always be unbearable. And we can give him his own understanding of how his mind works with his body, how it's different than other people, and we can give him a way to tell people he's not weird or batty or bad.

And we can all enjoy the parts of Simon that are fun and good, and understand that they come with the challenges of SPD, and we'll celebrate and encourage them all the more.

falling behind

2010-09-04T19:08:00.000-07:00

With a busier schedule, new job, a big move, and facebook, I've barely blogged at all lately. But here is my little guy, a big ole three year old now! He's LOVING it in our new place, and Bob and I are both so glad to be back with our friends and family at home. Our apartment is cozy and really nice, the backyard is gorgeous and the play structure lots of fun.

I'm starting a program with Portland Parks to learn about trees and be a neighborhood tree steward, Simon is playing with kids, and Bob is settling in to working from home and focusing on freelance writing. I hope it's the start of a long, nice, relatively settled time for us. A girl can dream, right?

Herb extravaganza

2010-07-14T21:47:00.000-07:00

After a cold and wet start to the summer, it seemed not much would grow here in the Northwest. We got lucky and my basil and lavender pulled through and are now producing well. Tonight I tried a couple experiments, below are the recipes as I would try them again, with a few improvements over what I actually did tonight. Let me know your own improvements if you give them a try!

Basil Cream Sauce
3 tbs butter
1/8 cup flour
3/4 - 1 cup basil
2 cups milk

Melt butter over medium-low heat
Add flour, whisking for 2-3 minutes
Add milk in a stream, whisking
Add basil, salt and pepper to taste
Turn heat to high, whisking constantly until mixture begins to boil
Return heat to low, whisk until milk is condensed and sauce is desired consistency

Lavender Ice Cream
3/4 cup sugar
1 cup lavender
small amount of water
2 cups heavy cream
2 cups half and half

Place lavender flowers in a small mixing bowl
Bring just enough water to cover lavender to a boil
Pour over lavender, cover bowl, steep for 15 minutes
Strain into saucepan using a coffee filter inside a wire mesh strainer
Add sugar, turn to medium-high heat, stir until sugar is completely dissolved
Chill lavender mixture
Add 2 cups cream and 2 cups half and half to chilled lavender mixture

Use ice cream machine or:

While in an ice bath or the fridge, mix well (keep cold to avoid making butter)
Pour into baking dish, shallow bowl, or similar, place in freezer
Stir vigorously every 15-30 minutes as ice crystals begin to form
Continue stirring periodically until desired consistency is reached, likely several hours

Changes

2010-07-08T20:41:00.000-07:00

It's been about a year since we moved to Seattle, and it seems that the Emerald City is just not for us. Even Simon pretends all his cars and trucks are driving to Portland. I'm searching for a job so that I can work, Bob can freelance, and Simon can be in preschool sometimes and with friends and family.

Bring me home, Portland!

Lavender Lemonade

2010-07-04T07:49:00.000-07:00

1 cup (more or less) lavender flowers
1 cup sugar
3 cups water
1 cup lemon juice (4-6 lemons)

Add sugar to water. Bring to boil, stirring until all sugar is dissolved.
Remove water from heat, let stand just until done boiling.
Pour water over lavender in a glass bowl. Stir gently, cover. Allow to steep for 15 minutes.
Juice lemons.
Filter lavender water through a fine mesh strainer, using a coffee filter if needed.
Add lemon juice to lavender water, stir.
Add 3 to 5 cups of water, to taste.
Serve chilled over ice.

Happy Father's Day

2010-06-20T11:45:00.000-07:00

This little boy LOVES his daddy, and for good reason. Through all the sleepless nights, diapering, feeding, tantrums, slapping, and everything else, Bob has been present and dedicated. For three years he's helped through the tough times and enjoyed the good - and we have many many more years to look forward to.

Happy Father's Day to my dad, Harlan, Blaine, Gary, that neighbor across the street who's name I can't remember, but pointed me to the get out of high school program at PCC, Mr. Berkham, and my fantastic uncle Tim. You've all helped to make me the person I am today, and I appreciate it.

2010-05-20T11:50:00.000-07:00

Simon seems to have left toddlerhood behind and is a whole lot like a preschooler now.

He speaks in mostly full sentences, uses pronouns properly and sometimes tenses. He counts to 20 and recognizes numbers up to thirty. He recognizes about 30 words, loves to spell the four words he can spell (red, blue, hug, and kiss), and reads books and his High Five magazines, sometimes an hour at a time. He remembers people, things we've done, and is even starting to pretend just a little.

Simon is a sweet little buddy most of the time, and he's still pretty shy around other kids, but he's getting better as time goes on and we see more little friends.

He says cute things, like "where is my kitty? Where could he be? Well.... I have to find him," and "white, pink, blue, yellow. That spells Mommy, I love you!" One of the funniest things he does right now is sounding completely disinterested or bored with things, even if he's excited about it. I'll ask him if he wants to play with something or eat something and he'll sigh and say, "Oh.... I do," or "well... I have to."

He's about 37 pounds and 39 or 40 inches tall, and seriously cute.

A little video of Simon, bored with the word cards he's known for awhile.

baseball!

2010-03-23T16:33:00.000-07:00

In honor of baseball season being nearly upon us, here are pictures of Simon, throwing a ball in a park, chosen to make it look like he is pitching. Game face and follow-through included.

Simon on a boat

2010-03-10T14:31:00.001-08:00

2010-01-10T20:18:00.001-08:00

life stages, as defined by blogs

2009-11-27T15:06:00.000-08:00

I've noticed something: I start a "concept" blog that fits well with my life, but when my life changes in a significant way, the blog falls by the wayside. The latte blog, for example: http://doubleshort.blogspot.com/ I started this one in a major latte drinking time of my life, Bob and I were both working full time so we had the money to spare, I was bored with my job, and had time to kill. This one ended after getting pregnant, I just couldn't drink that much coffee anymore.

Then there was http://lalitaeatsanddrinks.wordpress.com/ created to fill a void in my life where my critical thinking skills had gone in the year and a half of mommy-hood I'd spent at home. Again, life changed, Bob was laid off, I got a part time job, we didn't have money or time to keep it up. I could write again about the places we've gone in our new town, but I've lost interest. It's just food. I'm tired of it.

Now I'm moving onto a new stage of my life, trying to find out what I can do to learn and grown and move into a career, hopefully to do with trees. So now there is http://seedsofscience.wordpress.com/. Here I'll write things I feel and learn and like and am scared by as I work through books, training, thinking, and planning on the way to becoming... something. Whatever it is I end up wanting to become. This is less reader-friendly or focused. Really, it's just a personal journal, stuck online, because, well, that's what people do.

2 1/4

2009-11-10T09:13:00.000-08:00

Simon says a lot of things. He strings together sentences, uses words he knows to say things he doesn't know words for, and repeats everything he hears. Some of my favorites:

Simon knows that a ring is called a ring, and when I put on a necklace one day, he called that a ring too.

Simon loves the word "big." He often replaces "good" with "big" as in: "Big job!" "Big catch" (when he stops himself from falling over) "Big snack."

Simon asks for something then answers himself. He says "Strawberries cake? Of course of course of course" or "Color crayons? Yes please! Thank you. Of course of course." He picked up the "of course" from his book "You Can Do It Sam," in which mommy bear often says "of course."

Simon likes to call things yucky, mainly letters, and have us disagree with him. "M is yucky?" and I have to say "No silly! The M is not yucky!"

Two and a quarter is pretty funny.

The Halloween of the Flat Red Sucker: or why my brother should still feel bad after all these years

2009-10-30T21:29:00.000-07:00

I remember very little from childhood, names and faces of friends, lost teeth, birthday parties and Halloweens. I think I might have been an Indian one year, but maybe I saw that on TV. The one Halloween I can't forget, though, is the Halloween of the Flat Red Sucker.

It was a pillow case year - a year I was old enough to know that Halloween was not about costumes but about grabbing the maximum amount of candy. We had a complex system of trick or treating; the right houses, pacing, voice pitch, group composition (always have a preschooler), and candy bag. Thus the pillow case. They're huge in terms of the volume of candy that can fit inside and they make you look a little homely, so you get extra pity-candy from the soft-hearted.

I don't know what I was dressed as that year, how old I was, if it was wet or dry or cold, but I remember how I dealt with my candy when I hauled my pillow case in the door. My candy sorting process had been devised and refined over the years to provide the maximum amount of enjoyment for the longest period of time. Eat massive amounts of candy straight off and all you get is a generic sweet flavor and painful ridges on your tongue. Eat too few a day and you feel deprived and get weird white coated chocolates months down the road. My system was perfect.

I made piles across my bedroom floor, lined up in the order they were to be eaten. Candy I hated was set aside to be tossed or traded. This was primarily Butterfingers and Good and Plenty. The first piles were candy I didn't like but tolerated: non chocolate flavored tootsie rolls, tootsie roll pops, and anything cheap and waxy. The disliked-but-edible piles had up to five small candies, 3 bigger candies, or an equivalent mix of small, medium, and large.

The candies I liked a little bit followed, with 4 small, 2 big, or a mix. The more I liked a candy, the longer I waited to eat it and the less of it I ate a time. I never had piles smaller than two, even for the best candies (starburst, snickers), until the year of the Flat Red Sucker.

It sat at the very end of the line, all by itself, gloating in it's name brand wrapper. "Charms!" it shouted, reminding the wax lips of their place in the artificially flavored food chain. It's boasting went beyond it's protective wrapper; this was a bright red sucker, the most coveted flavor in any candy. It didn't matter if it was cherry, raspberry, strawberry, or poisonous berry. It was RED. Shiny, smooth, vibrant red. And it was flat. I had never seen a flat sucker and I was thrilled. I like the outside of suckers; they're delicious like jolly ranchers and you don't have to hold the giant thing in your mouth while it tears up the flesh on the roof of your mouth. The major downside of suckers is that they put the best part on the outside, leaving you with awful chocolate flavored crumble or bland chewing gum in your at the end. Sure, I'd had the empty centered Dum Dums, but those are small and their flavor second rate.

This was a Charms sucker without the ill-conceived chewing gum center. It was big, flat, untainted, with that handy paper stick to avoid mouth damage. And it would be the best flavored hard candy there could be. The "Charms" on the label and it's lovely translucent red were the guarantee.

The Flat Red Sucker glistened on it's own at the end of the row, tempting me to disrupt my own system and tear it open. But I didn't. I was faithful to my candy distribution method and consumed my little piles in the proper order. I went through my Neccos, my gummy hamburgers, and hid behind the school building with my candy cigarettes. I savored each fun-sized nibble of my Milky Ways and Snickers as the months passed by.

Finally it was The Day. Halloween and Christmas were distant memories; kids were gearing up for the Easter Haul. I left for school for the first since November without mini candies in my lunch bag, fidgeting and shifting through the school day in anticipation. I walked home as quickly as I could, ignoring the retaining walls I usually climbed and the crocuses I often stopped to admire and write hackneyed poems about. I rushed up the stairs and through my door and found my bedroom floor empty. There was no glistening red candy to welcome me home. No swaggering Charms label waiting to be torn off. My long anticipated, never-before-seen or tasted Flat Red Sucker was gone.

I tore through my room, unearthing toys and dusty homework from one corner to the next until I was convinced it couldn't be there. I cried, threw things, and maybe fell asleep for a little bit. I wandered out of my bedroom after awhile, hoping to unearth a little chocolate santa or discover the hidden stash of Easter bunnies. Instead I ran into my brother, home from school, enjoying a bright red, perfectly flat sucker.

I accused him of stealing, he claimed a friend had given it to him. I believed him for a few minutes, thought better of it, and tore through his room until I found the evidence I needed. The wrinkled square of plastic with it's little green "Charms" stamped in diagonals across the whole thing. I took it to him, I shoved it in his face, I said I knew he had taken it. He promised, he swore up and down that his friend gave it to him just that afternoon. My own brother couldn't lie to me like that. I trusted him, accepted the bizarre coincidence and tragic loss.

A few weeks later I sorted my Easter candy, crunch filled chocolate eggs first, caramel filled chocolate followed by green, yellow and orange jelly beans, with the pink and red jelly beans second to solid milk chocolates. The best candy, the smooth milk chocolates with chocolate truffle fillings were split in half. Half in tiny piles at the end of the line, half eaten seconds after the sorting was done. The system was compromised. I couldn't afford to take any chances.

New!

2009-10-29T18:05:00.000-07:00

Decision time

2009-10-17T16:03:00.000-07:00

I'm trying to select a new pair of glasses and I think I've narrowed it down to these three. Any opinions?

Hair cut

2009-09-26T19:52:00.000-07:00

Simon got his first real, non-mommy haircut from our friend Melissa.

Simon makes faces

2009-09-04T14:47:00.000-07:00

Happy Second Birthday Simon Ham!

2009-08-21T09:42:00.000-07:00

Two years ago.

One year ago.

Today.

2009-08-07T18:40:00.000-07:00

Chilly zoo morning

2009-08-05T13:37:00.000-07:00

It's finally cool again, so Simon and I wore pants and sweaters and went for a short morning zoo trip. We went to the family farm and temperate forest, but Simon's favorite exhibit this time was a leaf.

Many more leaf pictures over on flickr.

We do love living ten blocks from the zoo. Simon learned to say "strange animal" today, and not to get too close to roaming peacocks.

Visitor!

2009-08-01T19:09:00.001-07:00

Janaki came to visit! Click the picture below for more pictures.

Heat Wave, Fourth and (more or less) Final Day

2009-07-31T08:37:00.001-07:00

It was a tiny bit cooler today, and Simon took a nap!

Then I loaded my sweaty boy into the car.

He still loves to poke things.

We went to the Ballard Commons (or maybe it's called something else, I don't remember), a park with a little water feature.

A random man had two bouquets of flowers, he handed one to me and one to another lady and walked away. Strange.

We went into the air conditioned Ballard Library (our local one has no AC) and Simon read himself books. We also ran into our across-the-street neighbor and her 15 month daughter, so I got to chat while Simon read and organized stacks of books.

He's a good little reader.

Bob met us at the library, and I was happy to discover that at 6 ish in the evening it was already cooling down! Still hot, but not mind-melting, body-failing, hottest-ever, hot. We went to a little place in Ballard and enjoyed our last for now dinner out. When we got home, I fell asleep in minutes, and woke up to a cold morning. Hooray!

Heat Wave, Day 3

2009-07-29T21:47:00.001-07:00

No pictures today, I've reached my limit and didn't have the energy to pick a camera today. My body shuts down in the heat: Every part of my body is puffed to the size of an overstuffed sausage, it's hard to walk, to think, to stay upright. I sat immobile in front of the fan for most of the morning, watching Simon toss toys around the room, run back and forth, shouting, and sort of think maybe I should do something to entertain him. He didn't nap, so I put him in the car to drive over to this mall that had to have air conditioning. He was asleep in ten minutes, so we drove, AC blasting, up through Shoreline and back. He woke up, we wandered back and forth through the mall until it's AC gave up like the rest of us and the heat took over.

We got home and Simon lost his little mind, laying on the floor, sobbing and sweating. I got him in a cool bath, dunked my own limbs in, and we headed out to a funny Italian restaurant with blessed cold air. After a GIANT avocado and chicken salad and $2 Fat Tire, we made it home.

I made a big smoothie with leftover lemon mint granite, a ton of fruit I'd frozen earlier today, berry juice, and vanilla yogurt. It was loaded with sugar, half frozen, and just what we all needed. We set up two fans in front of our bed and settled in for Simon's first family movie. Toy Story 2 is the least scary of all our kid movies (that are in English) and he lasted for about 3/4 of it before he wandered off. He's in bed now, quiet, hopefully asleep in his little sauna.

It should be a few degrees cooler tomorrow, but not enough to be manageable. I'm not sure where we'll go or what we'll do tomorrow... maybe a wading pool in the morning, if I can get moving that early, but I'm really not sure how I'll feel. I'll arm myself with loads of water and either gatorade or a bit of salt and sugar, and see where my little one and I can cool off.

It's really good I live in the NW and this is a big rarity for us, I'm just not made for this weather.

Heat Wave Day 2, Part 2

2009-07-28T22:50:00.000-07:00

It was too hot to deal with being in the sun at a crowded wading pool, so Simon and I played in the bathtub.

and I made cold food for dinner.

Heat Wave Day 2, part 1

2009-07-28T11:47:00.000-07:00

Simon and I need to spend some time out of the house, but I wilt in the heat, so we went to the zoo in the morning when it was a little cooler. Simon had fun looking through the hole in the wall by the fox statue.

Even in the shade, in the morning, it was hot.

Simon likes to get branches, but this one was too high.

And, for Tammy, a really cool flower hanging from a flower basket near the Jaguar.

Hopefully, if you click this you can see a few more pictures from this morning on facebook.

Heat Wave, day 1

2009-07-27T20:23:00.000-07:00

It was hot today, Simon didn't wear much. We stayed home all day, I was too timid to go outside, and until 5 or so, it was cooler in here than out there.

But he does have his pacifier all the time so that he'll chew on that and not his fingers. This second set of molars is taking forever to come in.

We made crafts.

Simon built a tower with his blocks.

And put them away again, on his own.

If only he would fall asleep....

Home New Home

2009-07-14T19:40:00.000-07:00

We're here in our new town and finally got hooked up to the internet today. We unpacked in three or four days and have been settling and exploring since. Some things we've been doing that I haven't had my camera for: playing at B.F. Day elementary, a mere one block from home, trying out the zoo, ten blocks from home, stumbling on a great wading pool in a park in Wallingford, a long walk or a short drive, gorging on amazing Cuban food from a place five or so blocks away, and reading and sorting shapes non-stop at home with Simon. He can say the names of a lot of shapes now without prompting, like octagon, triangle, half circle, and oval, he's starting to get counting, and he knows a lot of words in his books. If he would just stay in bed, he'd be about perfect. ;) We do have pictures of our apartment, gasworks parks, and some pictures from walking up the big hill we live on.

We got a queen size air mattress, so if anyone wants to come for an overnight visit, we have a place to sleep. When we go to the zoo all three of us I'll take pictures, and bring the camera to our playground soon too. But, even better than pictures is seeing it in person!

Here's one half of our living room, with Simon standing in front of his books and blocks.

The other half, with a lounging boy.

Simon likes to say "a dot!" and poke the dots, which he got from his beloved book, The Dot.

Simon's toy and book corner, and Simon looking rather sad. He wasn't though.

Toddler bed, with Simon shaking his kitty about. I really don't know why.

Tiny kitchen with a misplaced chair. The kitchen has a big open area that gives us ample room for our table and highchair. There are pictures on the blank wall now, photographs Bob's sister took of gumballs and donuts. It looks much cooler than it sounds.

I didn't get a good one of our room, but here's the deck off of our room, which Simon loves to run on, throw balls, push his popper, roll his big trucks, and do other things it's not nice to do when people live below you. We also see a lot of seaplanes that have just taken off from Lake Washington. Simon yells "airplane!" until we look.

The Fremont Troll, a creepy thing under a bridge.

Simon taking a break from the uphill climb to dance.

He's recently become very serious about his coloring.

Gasworks Park, at the top of a really steep hill that people fly kites from.

Trying to prove to myself that we live in Seattle.

Simon requesting another bite of ice cream.

It's not Portland, but Seattle is beautiful too.

Last days in St. Johns

2009-06-15T07:55:00.000-07:00

Sun and rain

2009-05-16T13:35:00.000-07:00

More of the garden on flickr, click any picture to get there.

Things that grow

2009-05-11T22:04:00.000-07:00

(pictures soon!)

Corn
peas
potatoes
tomatoes
basil
thyme
rosemary
mint
lemon mint
oregano
cauliflower
broccoli
spinach
(hopefully) carrots

Grow garden grow!

a day at home

2009-04-20T21:20:00.000-07:00

I had a little playdate at my house today. Very little. Only one person ended up coming, but Simon and I still had fun playing and snacking in the sun.

What two juice boxes does to a little boy.

Playing on his slide with a truck.

Simon had a lot of fun.

Simon did not have so much fun yesterday when we went to the Beaver's game. We were only there a few innings; between his teething pain, tiredness, and being hungry but not eating, he was really miserable.

And our plants are growing. Lovely!

Simon is 19months old and I love him

2009-03-30T18:43:00.000-07:00

Simon!

2009-03-18T20:40:00.000-07:00

Simon put one toy keyboard on top of another, and then played them both. It was cute.

Simon's new tricks

2009-03-14T19:08:00.000-07:00

Simon has started to tiptoe, say hi, wave all the time, as well as throw little fits. As long as we don't look at him, he stops pretty fast, and most of the time he still listens really well. He's coloring a tiny bit, though mostly rolling the crayons across the floor.

My job is going well, I'm settling in faster than I thought, and everyone is very friendly and welcoming. I just really miss Simon so much. He's totally fine with Bob and Melissa once a week, but I miss being with him.

Job, job, job, job

2009-02-20T18:21:00.000-08:00

For the curious, I now work here: http://seekhere.org/

T-F, 9-2, administrating.

I'm delighted and terrified. And I am really really going to miss my boy.

2009-02-18T20:33:00.001-08:00

Oh I love him!

2009-01-30T12:56:00.000-08:00

Life Things

2009-01-23T13:01:00.001-08:00

I'm sure everyone has heard by now that Bob is being laid off, and has been offered a half time job at Mercy Corp with all his benefits. Great, but not enough money to pay all our bills, or eat. So we're both applying for jobs, and I just applied for one that I actually want to do. It's a front desk position at a chiropractor, and it's a job share - so it's just as part time as I'd need to work alongside Bob's job, I would be really good at it, I'd get out of the house, talk to adults, but still have a lot of time with Simon. It's in Beaverton, which is far from us, but we could still make it work, especially with the reliable car. Bob would get more time with Simon and could do his freelance work, and spend a good amount of time and energy looking for more.

So, for my praying friends, would you ask for this job for me? Maybe it's not the right place for me, but I really think it could work well and be just what we need to get by in this difficult time.

2009-01-17T11:23:00.000-08:00

Highchair

2009-01-15T08:23:00.000-08:00

We gave Simon Spaghetti last night, so naturally he ate in just a diaper. And I ran across a picture of baby me in the same chair.

We did it!

2009-01-10T14:17:00.001-08:00

We bought ourselves a dark red, 2004 Saturn Ion.

Boxing Day

2009-01-02T17:10:00.000-08:00

My dad and siblings came over for Boxing Day dinner. My dad gave Simon the biggest toy dump truck I've ever seen. He can ride in it, though he's too scared too yet. I think the truck will live outside in the summer, and Simon can have his own dirt pile to scoop and dump.

Merry Christmas Baby

2008-12-26T13:31:00.000-08:00

Snow!

2008-12-14T17:19:00.001-08:00

We went outside to play this morning. Simon didn't really seem to notice the snow much, he just did the things he normally does outside. From inside the house, however, he got really excited to see the snow falling. Simon had a lot of fun staying inside today, by the fire, playing with all his blocks, books, and bears.

Simon is beginning to look a lot like Christmas

2008-12-03T19:28:00.000-08:00

My baby is large

2008-11-24T11:38:00.000-08:00

I was surprised this weekend to discover I had scheduled a doctor's appointment for Simon at 8 am today. So now it's official, Simon is tall and pretty heavy. He weighs 27 lbs and is 33 inches tall, he's very healthy, and is napping away the trauma of his flu shot.

With his walking, new use of words and gestures, learning how to put his three balls through his toy, his mega blocks clicked into each other, roll cars across the floor, and chase them, and other new things, and his large stature, he really seems like a kid now, and not so much a baby anymore. He's a real toddler now!

A boy and his bear

2008-11-18T09:21:00.000-08:00

Simon's favorite bear has been lost for awhile, and I just found it this morning. He got it back, kissed it, bit it, and carried it around for awhile, and I followed him with the camera. Which is how I managed to capture on video the first time he's ever stood up without holding on to something! It's dark and wobbly in places, but I still think it's pretty sweet.

2008-11-16T16:12:00.000-08:00

2008-11-15T20:46:00.000-08:00

2008-11-14T17:36:00.000-08:00

A picture of Simon looking at pictures of himself.

When I say night night to Simon, he lays his head on the floor. So funny.

2008-11-13T22:03:00.000-08:00

2008-11-12T17:58:00.000-08:00

Simon and I got to see and hear Bob on a brief, spotty video chat. Simon was really happy to see him, it was darling. I took this picture after we'd had the chat on for a little bit, his smile was even bigger when Bob first got on.

2008-11-10T17:57:00.000-08:00

Simon has cute jammies, and makes an instrument

2008-11-08T16:41:00.001-08:00

2008-11-07T19:52:00.000-08:00

More Simon, and Uncle Roddy!

2008-11-06T16:53:00.000-08:00

2008-11-04T21:50:00.000-08:00

A reassuring post

2008-11-04T11:14:00.000-08:00

Bob posted a blog on the Mercy Corp site today, that is a little reassuring and very interesting, at least to me, though I admit my extreme bias. If you feel interested, too, check it out!

http://www.mercycorps.org/countries/pakistan/2373

P.S. I hope you voted!

A peek a boo sort of day

2008-11-03T18:31:00.000-08:00

Simon's steps

2008-11-02T20:16:00.000-08:00

Simon didn't stop moving today, so all his pictures are blurry. He was a busy guy.

Simon WALKS!!!! The day Bob left, yesterday, Simon and I spent the day with Kai and Ayla, and Simon walked all over their house. Today, I got him on video walking in our own house. Bob did get to see Simon's first step, and the following steps, but it's sad he's in another country for Simon really taking off. It will be super sweet for Simon to walk to daddy when we go pick him up in three weeks.

Simon isn't actually swearing, I promise, it just sounds like it.

all things Simon

2008-11-01T21:57:00.000-07:00

If I can, I'll post a picture or several and a video of Simon every day while Bob is away, so he can keep track of Simon's rapid progress with his walking skills and general cute-ness.

So, here's the boy today.

Bob's trip

2008-10-30T16:34:00.000-07:00

Bob leaves early Saturday morning for his trip to Afghanistan and Pakistan. He'll be updating about the trip here: http://www.mercycorps.org/countries/pakistan/2373, for those interested in keeping tabs on where he is, what's happening there, and the stories he's going there to find and share.

And for those that pray, please keep him in your prayers, not only for Bob's safety, but also that the humanity, need, compassion, and beauty of the people and countries he's visiting will be convincingly shared with people here, and that even in our difficult time, they would be moved to share whatever resources they have with those in need.

I did it!

2008-10-28T16:03:00.001-07:00

I got my license! Look out Portland, Simon and I are going to do stuff! woohooo!

Like daddy, like baby

2008-10-21T18:47:00.000-07:00

Simon's big decsion

2008-10-21T18:43:00.000-07:00

Will he choose the toy, or the cheerios?