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?

The Big Kid Event Success

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.