My sensory son learns to play

At one and a half, Simon loved to play with alphabet blocks. He never stacked, chewed, or bashed them, as kids typically do, instead, he pointed, over and over, to each letter and asked "is it?" All he wanted was to know the name of each letter. At one and two, he loved his cars and trucks, but not to drive. He turned them over and stared as he spun the wheels. As he got older, he also put them in lines. All over the house. 

Eventually, over a year "late," developmentally, he used cars to drive and rarely spun their wheels. He did love to lay his head on the floor and watch the wheels of his trains as he drove them, but he was driving them. It's also about this age, 3 or so, when most kids start to move from parallel play to interactive play with peers, and most of them are pretty adept at pretending. My son held his hand up to ward kids off, ran away, or screamed if they tried to talk to him. He would shout or throw a toy when an adult tried to pretend with him, or sometimes start to cry.

His difficulty with age appropriate play and his sensory issues were evaluated at OHSU, and they recommend we send him to OT for his sensory and motor planning delays. For social and emotional, they recommended going to preschool. We couldn’t find a preschool that would take him, in diapers, and that we could afford, so that was out. It was recommended we take him to Play Therapy. Some googling taught us that Play Therapy is a very deliberate, regular time where kids are brought together and taught how to play together, how to pretend, and how to have a conversation with each other. It sounded perfect for him, but would be billed to insurance as speech therapy, something Simon didn’t qualify for with his above average verbal scores.

We took him to parks, to the indoor gym, and eventually Swap and Play, just to be sure he was near other kids on a regular basis. He may not interact with them, but at least he’d be exposed to them. An evaluation with the public school early intervention team earned him eligibility for services as "moderately autistic" in the public school system. What this meant for us, a family unable to find a preschool and Simon turning four, was a weekly visit from an early intervention teacher. Though he isn't clinically on the spectrum, this service helped him get to the biggest social development he's had so far.

After a few weeks of getting to know each other and for teacher Mark to figure out what Simon needs, he started meeting us at Swap and Play to start teaching him how to pretend and how to play with kids. Being an adult that wasn't a parent, Mark had special sway with Simon. As he slowly pretended more with cars and trains, Simon slowly got more used to it. As Mark led Simon and a swap friend in silly "boo parades," he slowly got accustomed to other kids doing the same thing he was doing. Because it was Mark, it was okay. Mark and Simon played hide and seek with a friend. Mark and Simon played trains near a friend. Mark helped Simon ask for a toy he wanted, and taught him how to introduce himself and get a friends attention. 

Now, at four and a half, with his swap and play therapy, lots of time with various kids, and getting older, he can ask a friend to play hide and seek, or other basic kid things. And they play. Together. Today at swap and play, while mastering a new trike riding skill, he got a friends attention, asked what they were playing, and watched them for a minute. What they were playing was too scary for him, so he didn't join in. But he was interested and successfully started talking to them, and that is a wonderful success. He’s madly in love with his trains and cars, and after years of never naming a stuffed animal or toy, he’s chosen names for every single piece of his collection, he remembers them all, calls them by name, and, most amazing of all, he pretends with them. Diesel 10 talks to Charlotte about being busy at the dock yard, and the car Lucy talks to Benedict about driving fast. They do work, they get in accidents, and they help each other back on the tracks. It’s still based on stories from books and TVs, but it’s no longer a recitation of those scripts.

He still wails when you try to make one train mean to the other to practice his problem solving, and he did shout, very loudly, at the kids at Swap to shut up when their play involved running from a dangerous storm, but he’s made amazing progress, and as he starts Head Start and has help there from his dear friend and play therapist Mark, I expect we’ll eventually see Simon handle a pretend storm calmly, or maybe someday, dream one up himself. 

What it's like to live with Sensory Processing Disorder. With Sticks.

Yesterday I wrote about what it's like for me to live with fibro, using sticks as analogy for energy/emotion/ability and so on that makes it possible to get through, and hopefully enjoy, a day. Now I'll use sticks to explain what it's like, as far as I can tell, for Simon to live with Sensory Processing Disorder.

Fortunately Simon doesn't have problems with pain or energy, he's limited by how much sensory input he can handle. For him, running out sticks means anxiety, distress, screaming, hitting, throwing, or any other sort of lashing out, like the cup of water he threw on me a few days ago. The hitting might be in response to something non-sensory, like needing to clean up, but it's often due to a lack of sticks. When he's out of sticks, his (already limited, he is only four) ability to regulate his emotions is gone. All kids lose sticks for things like being hungry, tired, overstimulated, and having a variety of other needs unmet.

Simon's unique sensory system causes him to experience most sensations more intensely, leaving him one stick down for walking down the block near traffic, where other kids would be unphased. Music is very good for him, but it takes at least one stick to listen to. Some things are obvious, loud noises take stick, touches to his face take a stick, and busy places take every stick that's ever grown on a tree, shrub, or hardy plant. Others have been a surprise, like losing sticks for trying to draw, or learning to eat with his hands. Getting a spot of water on his clothes used to take a bundle, but now only requires a small twig. Getting dressed in the morning takes a stick, changing plans or do something spontaneous takes many sticks, and tolerating the fan in the bathroom would take an entire forest, if he had it available to him. Playing near other kids takes a stick and playing with them takes a few more. Visually busy environments, places with people or things moving, too many colors, or too much clutter take about one stick every half hour, depending on the intensity of the situation. It takes sticks to sit in a chair, but not to sit on the floor. It takes sticks just to brush his teeth. His internal sensory issues seem to be pretty mild, so it's hard to tell, but it may even take sticks to move his body through space.

One wonderful thing we've learned is that Simon can get sticks back. When he builds a giant pile of pillows and jumps and bashes into it, it's not just fun and exercise.The kid is getting sticks. The compression of his joints with each jump and crash brings order back to his system and gives him a few more sticks to regulate and tolerate. Just like me, being in the water seems to provide sticks, and deep pressure, like those ten blankets he sleeps under, give him sticks. Taking sensory breaks or finding ways to cope, like wearing headphones, stretch out his stick supply, so experiences the same amount of input over a longer period of time, giving him more time overall to participate.

In the long run, he can also train his system in such a way that activities are less costly. While a kiss on the cheek used to take a stick, it now may only require a twig. By simply growing older, slowly, safely, experiencing more textures, spending more time in water, and getting his stick building activities in daily, he's become less sensitive to tactile sensations, and keeps a lot more of his sticks. He'll always need to be cautious of how his sticks are stacked, but we gratefully expect him to eventually hold on to many more of his branches.

An analogy. With sticks.

A friend recently recommended a website to me, and on that website was a useful story. You can find the useful story here:  http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ Though useful, I have problems with this story. First and foremost, this is NOT a theory. This is not an idea, formed by your education and insight, explaining why or how or when. This is an analogy. This is the use of objects to represent another thing, in this case, what it is like to live with a chronic illness like fibromyalgia. 

Also, after reading the word "spoon" and "spoonies" repeatedly, I want to eat with my hands for the rest of my life. As I'm going to use this analogy for Simon and I, I think I'll use some other object we both like. Something like - sticks. It of course makes sense to use money, as it's something you earn and spend and go into debt over. I hate talking about money, and I really like sticks. This stick analogy works for both my fibro and Simon's SPD, but in different ways. I just love talking about myself, so I'll start with me. 

What it's like to live with fibromyalgia. With Sticks. 

The premise of this analogy is that every person begins each day with a certain amount of sticks in hand. Everything you do during your day takes away a stick. Or more than one, depending. Most people have an adequate to over abundant supply of sticks, and so using up your sticks is not really a problem. You could have a full day and still have enough sticks left over to build a small fort or roast marshmellows with your friends. The trouble with fibro, at least as it's manifested for me, is that I never know how many sticks I'll wake up with, and it's often not enough. Say I start a particularly bad day off with only five sticks. Getting ready for and getting to work: 1 stick. Getting work done in a reasonably productive manner: 2 sticks. Sitting in my chair, working through the terrible pain in my knees: 1 stick. Getting out of work and onto the bus: 1 stick. I'm out of sticks. I fall asleep on the bus. I sulk through dinner with my family, maybe nodding off at the table. I leave my exhausted husband to put Simon to bed, I go to sleep. 

Some suggest that I should just power through it, keep myself awake, help with the kid, stay up past 6:30 and get some things done. I can do that, I won't drop dead at the end of my sticks. But my pain will get worse, which will interrupt my sleep, which means when I wake up tomorrow, I'll start with only 4 sticks. I have to get through work, so I do, and have less sticks the next day, until it's Saturday and I'm so stick-deprived I sleep until 1pm. Not all days are this bad. I might have a seven stick day and poke around on the internet after I get Simon in bed. I've been known to have ten - twelve stick days, when I work well, cheerily parent my son, embroider something awesome, and maybe even see a friend.

I'm working on finding ways to increase my daily sticks. Tai Chi and acupuncture seem to be helping so far, and I'll see if I can find a way to balance getting at least some twigs out of water aerobics without going overboard and getting distressing rashes from the chlorine. I'm also learning to accept my short stick days, to be okay with doing less and not feeling sad and guilty about it. So please, friends, know that if I'm not in touch for awhile, it doesn't mean I don't care, it just means I'm out of sticks. 

(and now, I'm low on sticks with a lot to do. more on sticks and SPD when I'm feeling a little more twiggy.)

An Abrupt New Start

Tuesday was hectic at work. I was impatiently waiting for the delivery of my new sit/stand desk to help relieve some of my fibro symptoms, I had a lot of actual work to do, and I spent a good portion of the morning on the phone with IT trying to find out why I suddenly couldn't save anything to my department drive. During the mess I missed a couple phone calls on my personal phone, and noting that they were an OHSU number and an unknown number, I assumed it was an appointment reminder and a spam call. When I finally got around to listening to the voicemail, I was greeted with a vague message to call my doctor's office (a little scary) and a call that dropped my stomach to my toes and got me impossibly hyper.

"Hi, this is Rebeccah from James John Head Start," the voicemail started. It dawned on me that we had in fact been placed on the waitlist months ago. "I'd like to let you know we have an AM spot for Simon if you're interested." As I do when I'm excited about something, I jumped right into the details: It's February, so he'd only have three months of school. He might not adjust in that time. Even so, it might help him adjust next fall. Or it could turn him off of school. It's only three hours a day, which is far longer than he's ever done anything, but short enough to get through. Better than jumping in to full day. Bob could get work done undisturbed! Except when he'd need to be in the class. Or maybe Simon will do better without us. Mark (early intervention teacher) will help him there instead of Swap! We won't be at Swap much, the kid will be far too exhausted. He's worn out after 30 minutes of gymnastics class, and it's not the physical activity that does it.

On and on and on. In the midst of the processing overdrive, I called, checked my chart, called again and saw they were just letting me know insurance denied a prescription, no concern there. Back to Simon. Bob and I chatted. I posted on Facebook. I remembered to get some work done. I decided to call back to say yes to the spot, knowing I could change my mind, and I really didn't want to miss our chance. We chatted, waffled, conferred, and decided we were definitely leaning toward going for it, but would wait to see what Mark had to say. We fully expected him to be enthusiastic about it, he brought us the application and was really disappointed when Simon didn't get in earlier. I sent him an email so that he'd have time to think it over before they met at Swap today.

No thinking needed to happen on Mark's end, before he even talked to Bob and knew if we were going to do it, he went to the Head Start, camera in hand, and took pictures of the teacher, the classroom, and the school to get a social story ready to prepare Simon. This county teacher randomly assigned to our family took this extra step before he knew what our answer would be. It's a touching indication of how much he cares for Simon, and I'm grateful this will give him a chance to see Simon at the school he'll go to in the fall. Head Start isn't in the same building of course, but it's the same location. Despite the adjustment concerns, and worry that tough three months will sour him to school, the opportunity to do it now and at James John is most likely going to give him a great experience to help him ease into Kindergarten next year. Every time I think about the reality of it, my guts flop again, but I'm really hopeful about the chance this will give him to do well.

The itsy bitsy spider, and other terrifying things

This afternoon, Simon sang "the itsy bitsy spider," and then said "that's all I know."

I jumped in "the itsy bitsy spider, when up the water - oh hey! Simon turn around, I want to show what I did when you were a baby, you used to love this!"

A little excited, he turned around, showing me his back. I started the song again, walking my fingers up his back like the spider, and running them down his back for the rain.

"ugh, ugh, ugh!" he jerked away from me and turned around, defensively keeping his front facing me. I tried to reach for his back to see if he would like the rainbow motion of "up comes the sun." He ran away from me and hid in his room.

After some time and gentle coaxing, I got him to tell me through his tears that he was scared of the spider and what it was going to do. The poor kid thought there was actually a spider on his back. He probably didn't like the sensation, maybe to the point of distress, and already freaked out, the spider seemed real. Or it could be that he just took it very literally. After accepting that there was never a spider on his person, he switched to concern for the spider. "But what happened to the spider," he asked, tearing up again. It took a few minutes, but in the end, he trusted that both himself and the spider would be okay.

He does this sometimes, thinking a joke we are making is real, and he gets so upset that he cries and hides, and its difficult to convince him it was just a joke. Pretend that a train is unhappy or troubled, and he flails on the floor, weeping. And other times, he'll giggle and joke along with us.

It's hard to know what will set him off, why some moments pretending to take his kitty is silly and a start to good natured rough-housing, and other times it will get you tears and a kick to the face. I can't tell why he was so convinced the spider was truly crawling up his back or in danger of being washed away. What makes him forget about jokes and pretend and take everything so seriously? We might be able to work it out, but in the meantime, I'll refrain from singing about spiders.

sometimes we grieve

I dreamt last night about visiting a zoo with Simon and my aunt, uncle, and their young daughter. We met up with a large group from Swap and Play, and progressed through the animals, an arcade, and some group activities 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, that is, except for Simon. We struggled to get him in to his headphones in the noisy arcade, and he yelled and crashed around. In the middle of a song with hand and body motions, he bumped himself into or came very close to the other kids before jerking back. He poked, bolted, and wandered. And I cried. The experience wasn’t real, it was just a dream, but the tears were real. It was a moment of grief when noticing how different and difficult my son is, for the challenge ordinary 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 beloved relatives, but that’s another thing entirely.)

As we gather information for kindergarten and slowly introduce the idea to Simon, I’m overwhelmed with sadness that it’s just not going 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 be exciting or scary or not a big deal, but I know it won’t be easy. That’s sad and frustrating, but hopefully only for a few days and maybe a few dreams. Grieving is necessary, but I’m looking forward to moving on, to feeling determined, hopeful, and prepared. We’ll talk to his early intervention teacher, friends with experience, and eventually his IEP team, working out a plan we think will work 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 and difficult. 

A family diagnosed together stays together

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?