Truly, I'm not particularly old, though I fee like I am most days. My wonderful acupuncturist holds the same theory I do about my fibromyalgia: It's based in my over sensitivity and my inability to habituate, or filter out the unnecessary input. She describes it as lacking a strong core, of the energy center in my guts being unable to filter. Occupational Therapists and others that diagnose SPD would describe it as a disordered nervous system response to sensory input. Two ways to describe what causes Simon to fight touch and sound and what causes me systemic pain and fatigue. In order to help Simon work through his sensory issues to get through life now and hopefully reduce it's impact later, we've worked to find adaptations and activities to reorganize his system.
Most of his 'sensory diet' as people call it is typical play, but we make sure it happens often and appropriately. Simon's main 'diet' consists of: crashing pillows and blankets, crawling through a tunnel, climbing sliding, being squished under blankets, pillows, and in the couch, rocking, swinging, roughhousing, using straws to eat yogurt, chewing gum, and listening to music. His adaptations include: sleeping on the floor under ten blankets, one weighted, noise muffling headphones, a strangely early bedtime, and a limited schedule. With this and time, we're seeing him succeed socially and sensationally in ways I hadn't even hoped for.
But what do you do for an adult's sensory diet? I don't feel like crashing into things, swinging makes me queasy, and I don't fit in between the couch cushions. Simon's diet came together by thinking about what he needed, what he liked, and what was available, a formula that may work for myself as well. So, what do I need? Adaptations are easier to think of, and they alleviate immediate symptoms. They won't, however, give me a stronger core or reorganize my sensory system. Still, I stand most of the day at work now, giving relief to the ache in my legs. I limit my schedule and sleep much more than average adults. I desperately need to purchase ear plugs to wear on my way to and from work. I wear soft clothes and avoid hugs. I want to go beyond adaptations, to create a sensory diet that will calm my overall sensitivity and teach my nervous system how to respond appropriately to stimuli. SPD and Fibromyalgia have no cure, but it can be very well managed.
What do I need in a sensory diet to make myself more capable of filtering sensations? If it's the same as it is for children, and if the Occupational Therapists are right about that, I need: Deep pressure, heavy work, vestibular input, sensitivity specific input. One thing is obvious immediately: I need my own weighted blanket. When I get my nine hours of weeknight sleep and 12 hours of weekend sleep, I could be getting 9-12 hours of deep pressure. I won't sleep on the floor like Simon does, but it should still be effective. I will have to make it a point to gather the money we'll need to buy one. Expensive, but undeniably worth it. But what else? I don't want to crawl through tunnels or jump on the couch. Out of ideas, I'll consider heavy work. As a functioning adult, I get some heavy work over the course of cleaning and yardwork, but it's not always consistent or long lasting. There is the wonderful water aerobics class I joined, and it certainly is heavy work. Will two hours twice a week be enough, or do I need to find more? I suppose I could carry a heavy backpack to work or push heavy things across our floor, but it feels silly to something so arbitrary. Perhaps I'll take up vacuuming our neighbors house. They would certainly appreciate the effort.
What about vestibular, would that matter for me? And how would I get that? Water aerobics again: the bouncing up and down, twisting and rocking side to side would provide that inner ear stimulation. I should make a point to sit in our rocking chair with more frequency, if we can keep the darn thing from falling apart. And on to the sensory specific. What I most sensitive too? Like my dear Simon, it's primarily sound and touch, with a big impact on smell as well. Sound is easy, I have a walking music encyclopedia as a husband. We can work out soundtracks to listen to, with the nice, soft, easy but interesting music I like. There a thousand aroma therapy products in existence, I should find and use the ones that stimulate without overwhelming. But what about touch? The sense I respond the most to. Again, there's water aerobics and a daily shower. The feel of water is intensely relaxing, if such a phrase is possible. We have Simon's theraputic brush that he won't use. How strange it would it be for my spouse to brush my skin every day?
How does an office working adult with sensory processing disorder and fibromyalgia create a sensory diet? I think I might be on my way.
Mar 2, 2012
Though never diagnosed, it’s ridiculously obvious that I have and have always had sensory processing disorder like my son. Even as an adult I’m pickier than my four year old, requiring squidge-free chicken and small or well covered pieces of beef, because I find the texture unbearable. I wince and cover my ears at loud sounds, I can’t understand what people say when there is background noise, and I just about go into mental shutdown when there are two different songs playing at the same time. I jerk away from light touch and lean into deep pressure. As a high-functioning adult, it’s harder to see the SPD, as I can control my reactions to sensory input, and don’t scream, fight, run, or shutdown as I did and as my son is currently doing. You can’t see it, but it turns out, I can really feel it. As I learn more about my fibromyalgia diagnosis, it is clear to me this has been building up for a long time. I’ve always been frustrated and looked for excuses when I got tired easier than all my friends, when physical activity came easier to everyone else, while I shuddered and shut down in gym, and when people could act just the same as they always do in loud restaurants and concerts, and I could barely speak or move around. I assumed that I was just weak, and that my need for space and rest after social activities or panic at walking into a loud room were just depression and attention seeking. While that has been a part of it, I realize now that another big piece is this SPD issue. It takes a lot more for me to get through a day than it does for most people, and that leaves me tired. Not just sleepy, time for bed tired, but fall asleep on the table, forget you’re speaking in the middle of a sentence tired. And now, as I’m parenting, working, and volunteering, as well as trying to maintain connections to my friends, and I’m giving myself less time for rest and the input and stress increases, I’m seeing a great increase in pain. I’ve always had some pain, I’ve had daily headaches for years, but recently it’s gotten so bad I can’t sit, I can’t sleep, and occasionally I could barely move. With no break and no outlet, the sensory overstimulation has built up to a point where my body started shutting down.
It’s hard to accept that I need to limit what I do and make time for interventions. I still feel that I’m lazy, weak, and faking these issues for attention or to get away with behavior, and while I know I’m not, it’s taking a long time for what I know to change what I feel. It’s hard not to feel guilty for lying down after a day of work instead of helping clean up or get my son in bed. It’s frustrating to cancel on a dear friend because I’m having an off day and the pain in my knees is too intense. It will take time to give myself the same lenience I give my son, knowing that I don’t have to pick up everything by myself after a long day, the same way I don’t make him do it by himself when he’s over stimulated. It will take time to learn my own signs and triggers to take breaks or get the input I need, the same way I’ve come to see that Simon’s “spectrum eyes” and impossible fidgeting are bright, loud warning signs that the child needs a sensory break immediately.
I’m learning that a cluttered house doesn’t just annoy me because I’m tidy, it overwhelms my visual system and cause real, legitimate stress, and without an outlet, it wears me down and my brain causes me to feel expansive, unrelenting pain. It’s true with music, tickling, light touch, particularly on my upper arms and thighs, with temperatures too hot or cold, rooms to busy, and smells too strong. As I begin to emotionally accept that is true, I begin to think about how to manage it. Acupuncture and tai chi will help me get rid of the stress and over stimulation, and I can continue those as part of my own sensory diet. I can seek my own proprioceptive input, claiming the rocking chair for myself, and coming up with my own heavy blanket. I am standing more at work now, and need to buy some ear plugs and sun glasses for my long transit commute. Like we do with Simon, I can adapt my schedule, gather my tools, and discover my triggers, and hopefully relieve some of this pain and see more energy back in my life. My nervous system misinterprets sensory input as pain and works hard to minimize my reaction during the day, so I will work to limit the input in ways that let me function, and find ways to relieve and rework my neural paths to allow rest and reasonable output. And I will be grateful that we know how to help Simon now, at 4, so that he can be a sensory pro by the time he’s an adult, instead of running himself into the ground and finally learning what is wrong and what to do.
Mar 1, 2012
“Head Start social stories” went into the google search bar, and a few clicks later, I found what I was looking for: http://depts.washington.edu/hscenter/downloads. We’re not in Washington, but they were still perfectly applicable. I typed in Simon’s name, age, and school where prompted, made a few adjustments, and printed story after story, with pictograms of happy children, angry children, and washing hands sliding by. When handing Simon the little packet of pages, I told him, with great enthusiasm, “look Simon! I made these stories for you!” He hustled to the table with the book to look it over. We read the stories to him, he read the stories to me, and I tried to be sure it didn’t up too far under all the other books. We were going to get a spot in Head Start soon, and we needed to be ready.
Another phone call and we had a day to meet the teacher. We read the stories again and after Simon was in bed, Bob and I formed a plan for getting him ready. I wrote out, on the back of a manila folder I used to bring documentation for the teacher home from work, a getting ready for schedule. We started at 7:30 with going potty. By 8:00 am it was time for sensory activities: a list of things he would like to do that would give him the calming, centering, regulating proprioceptive input that would start him off in the best sensory space he could be in. After we worked our way through going potty again, getting on shoes, and heading to the car, we compiled a list of sensory fun that we could truly accomplish in the morning. Crashing Daddy made the list, but not crashing mommy. Burrito rolls were left off, as I love to do it with Simon, but Bob feels uncomfortable. I gathered ideas I’d read on the SPD blogger network and the sensory support Facebook pages, and we ended up adding tug of war, crawling through a tunnel with animal walks, and reading in the rocking chair with a heavy blanket.
With our manila folder schedule complete, it was time to practice. I started out on Monday morning, taking a whining Simon through the steps to get ready for school. Though whimpering and complaining the whole morning, we successfully completed each step on time. At 8:30 he was fed, clothed, clean, and regulated, so we headed to Swap and Play to hang out. Tuesday morning we were at it again, this time with Bob running the show as I headed out to work. I left the house to Simon screaming and hurling things at the door; he had expected me to practice with him again, as I had done it the morning before. He certainly wasn’t opposed to Bob being there with him, they’re together every day, but the unexpected change caused him great distress. He settled down when I was gone, and they were again out the door on time, with everything accomplished. Tuesday evening we wrote a special advanced list, writing out what we would do the next day.
On the list was: Practice going to school, playtime, lunch, meet Mark at Swap and Play, and of course, the big one: Meet Teacher Sam. Simon whimpered and darted about, unfocused and upset. I asked him what was wrong, and with a little gentle leading, he talked about feeling nervous about not knowing what would happen. Bob and I both reassured him, and when he woke up the next morning, it was all excitement and impatience to meet the new teacher. I left work early and met my boys and we took an antsy Simon to the Head Start building. He was polite, he introduced us to Teacher Sam, and settled in to the train set he was shown. The three of us grownups sat in tiny kid chairs and filled out a form, talking about how well Simon reads, how hard it is for him to use scissors, and how he might react to loud sounds or being touched. I brought out the list I had typed of Simon’s challenges and ideas of how to help him in the classroom. Sam read it over, asked questions, and made a few suggestions. He came up with a spot to story dry clothes and headphones, and suggested we may not need to do much for circle time, because it’s really quite brief. We shook hands, took our photocopy of the daily and monthly schedule, and headed off to a victory dinner at Burgerville with our high hopes and nervous bellies.
I took a few minutes that night to write out the long morning schedule as it would be each school day, from 7:30 potty trip to 11:45 end of school. It’s in permanent ink, as it will stay unchanged, and there is still room for afternoon and weekend lists to the side. He noticed it right after waking up and came in to tell me, warm, sleeping me, that there was a strange word on his list he didn’t know. After finally dragging myself out of bed, I told him the word was “choosing,” and that was the time at school he could choose one of several activities in class. He whined about that, it was confusing and ambiguous, but promptly turned chipper and told me he was ready to go to school. At 6:50, in pajamas, and unfed, I had to tell him it would be a little while. He fretted about the time, tried to avoid brushing his teeth, and made a big, successful effort to put both of his shoes on completely by himself, and it was finally time to go. We walked slowly across the surprise snow into the car.
After a few restless pauses for me to take pictures, we were at his classroom door. Other kids and parents were streaming in, and some recognized Simon as new, and said hello. He didn’t respond as he was trying to find a spot to hang his sweater and rush into the classroom. His cubby was labeled and outerwear stowed, and after a bit of wiggling in the hall, Teacher Sam was ready for the kids. Simon ignored him as he pointed out Simon’s paperwork cubby in the class, and headed to the carpet where kids gather to play. I called him back, showed him where he could find his headphones, and sent him off to play again. I gushed and cooed over his little name card by his breakfast plate, and quickly froze, startled, when someone yelled. Simon went running. He ran to the front of the class where Bob and I lingered, turned and headed to the store. Thinking we were going to have a new challenge on our hands of classroom fleeing, I started to call him back, to tell him he can’t leave the classroom. I stopped mid-sentence as he reached onto a shelf and pulled out his headphones. His headphones that work like magic, but that we often have to force him to wear. He put them on by himself, with a little adjusting from Bob, took a few breaths, and rejoined the kids on the carpet. After getting over my shock, it seemed like it was time for us to go. We said goodbye and were ignored as we walked timidly out the class.
Through evaluations, diagnosis, occupational therapy, social therapy, daily lists, sensory diets, social stories, reminders, good days, bad days, new friends and new places, we had finally arrived. We left our son in a preschool classroom as he successfully used his tools to manage his sensitivities. He had a great first day, and while we know they all won’t go quite this well, we know he’ll succeed and that we can proudly watch our efforts and interventions help our son do well and truly thrive.