Posts tagged ‘sensory’
be crazy. No, scratch that. I know I’m crazy.
School registration came up quickly this past spring, and I knew in my heart I didn’t want to send C back to his current school. There’s so many reasons why I felt this way: not the least of which was one of his teachers telling him God spoke in her ear at the bookstore and told her the Harry Potter books were evil; or the fact that based on one test (which “I didn’t do well on purpose because I didn’t want more homework, Mommy”), C was placed in what seemed to be remedial math (despite his being able to do long division in his head); or the fact that several of his specials teachers gave him such useless, meaningless, negative comments – without any context – on his report card. It’s more than that; it’s a feeling that despite getting straight As last quarter, the gaps in C’s education are far greater than they should be.
So the great search began once again. C “shadowed” at two schools. We chose one of the two, enrolled him for next year, and settled down to wait. Except I didn’t feel settled. That little voice in my head just kept creeping back in telling me none of it felt right. It grew and grew until I hatched a new plan. All of C’s schools – public, charter, and private - went sour after a time, and some far more quickly than others. We keep moving C to a different school, either because the current school doesn’t work or because we actually move, and they all turn out the same. Some sour more quickly than others, but they all end up in the same place – the WRONG place.
Then I saw that quote about the square peg fitting into a round hole: The problem with trying to fit a square peg into a round hole isn’t that it’s hard to hammer, but rather that you are actually destroying the peg.
And boom. There it was. It’s not that the schools are wrong (although some of them, frankly, are). Perhaps it’s that C doesn’t belong in school. Perhaps putting him through the stress and anxiety of trudging through school every day, never wanting to go back on Monday mornings, and feeling like the week is one hundred years long is not what C needs. Perhaps there is no school that is right for C.
So the idea was born. I resigned my job, cancelled his registration at his new school, and started planning. C and I will start our new homeschooling adventure on September 3, 2012. Our journey along the path to what we need continues with this newest chapter, and I hope you’ll join us.
This kid is ready to DRIVE! Is MY seatbelt fastened tight enough???
It’s only a matter of time before C is smiling because of the view behind him, but for now, I like the smiling out of sheer joy of sitting in the sand. It was only a few short years ago when C wouldn’t even get in the sandbox!
I have a picture on my bulletin board of a kid sitting at a high chair with spaghetti covering much of his head, face, and arms. This is my inspiration. C’s first feeding therapist told me if we ever got him to go as far as to smear food in his hair, we’d be done with her. I’ve sort of given up on the spaghetti in the hair fantasy, but I’d settle for C’s eating spaghetti with sauce (instead of shaped pasta dipped into ketchup – we couldn’t possibly put the ketchup on top of the pasta, of course).
Still, I’ve long had visions of C wearing birthday cake like most one year olds do on their first birthdays. Yet even on his first birthday, C didn’t touch cake, and he definitely didn’t eat it. It was no different on his 8th birthday, where he actually requested cupcakes like the other kids would have. I found gluten free, casein free, egg free cupcakes with frosting, and surprisingly, they didn’t taste like cardboard. He still wouldn’t eat them at his party, but he did blow out the candles. The next day, however, without the audience of 15 of his friends, he decided to try the cupcake…and proceeded to eat the whole thing.
I think 8 is going to be a very big year.
Our brief foray into the world of Boy Scouts is over. It was quick and somewhat painless (at least for C, not so much for me). It all started at our last IEP meeting, where a discussion about how to help C make some connections with other boys somehow evolved into my becoming a Cub Scout Den Leader. It happened almost before I knew it, so skilled are those folks who participated in our IEP. Frankly, it was a good idea, in theory. The reality, however, was different (and thank you, Husband, for somehow managing not to say “I told you so”).
As is sometimes my way, I jumped in with both feet and almost immediately wanted to run screaming into the woods. Never mind the woods are where Cub Scouts are supposed to be. I thought I had enough information to make a wise decision, but I was wrong, wrong, wrong. I signed up, thinking it would be good that I could control the den and our activities. C needs to work on gross motor skills? An “outing” (the Cub Scout word for “field trip”) to the climbing wall. C wants to learn about stars? Planetarium, here we come! What I failed to take into account, however, was the likely difficulty of my being leader and C’s parent at the same time. In the past, this hasn’t been a good combination. And as I read through the overwhelming “to do” list for leaders (graciously provided after I accepted the job), I quickly realized there was no way I could do it all and still help C have a positive experience as a Scout. So after a few days of agonizing about it, I told the pack leader I just couldn’t do it. “But I’ll be a leader’s assistant!” I graciously offered, thinking this would solve my problem of needing to be in attendance with C at meetings but not wanting to actually run the meetings. So the poor man found another leader, and I merrily went on my way preparing to be an assistant.
Then the email came. The email that ended it all. It was a schedule for the boys’ first campout coming up next month. Included was a list about 12 pages long of the exact activities in which we would participate that would ensure the maximum number of badges would be earned in the course of the weekend. Wait a minute, did that say weekend? Given we’ve never even managed a camp out for one night in our own backyard, it’s hard to imagine going an entire weekend in a tent with, well, C. One of the first activities was for the Scout to plan and prepare a family meal over the campfire. C doesn’t eat meals. C eats finger foods. And certainly not finger foods cooked over a campfire. Can we eat Fruity Booty right out of the bag? Does that count?
After that email, I continued to fight with myself about why Scouting would be good for C. He loves all that positive reinforcement; badges and pins would be a thrill for him. It’s organized, structured and busy. Yet for the first time ever, we may have found the activity that’s too organized, structured and busy for C. The thought of an entire weekend camping out (which I think we would all ultimately enjoy after some practice) with an entire Pack of distractions and frustrations for C, made me want to run screaming into the woods again.
So with a heavy heart, I resigned again from Cub Scouts, and not only for myself, but for C. Given he hasn’t even mentioned it since the first and last Pack meeting we went to, I don’t think he cares. We’ll have to run our own camping trips to the county park near us. Just not on the same weekend the Cub Scouts are there.
Everyone has things that bother them on a sensory level. Some people don’t eat cottage cheese because of the texture, don’t like walking barefoot, or don’t like loud, crowded concerts. This is all a piece of the sensory puzzle; kids can be hyper-sensitive or hypo-sensitive to any number of things. C is both hyper and hypo, which makes it challenging to know exactly what will be problematic or uncomfortable for him.
The first time I ever tried to set him down in the grass, up came his feet. He was a baby then, and it was almost comical to watch, because he didn’t even see the grass, he sensed the grass. Bottom went toward ground, feet came flying up. Bottom went back up, feet went back down. He did just about anything to avoid grass or sand. It was years before he would play in the sandbox instead of next to it. We cheered the first time he flailed around in a pile of leaves. He was 6.
C’s hugs have followed a similar progression. The first hugs he ever gave were shoulder hugs. He’d offer his shoulder to someone for a hug. He’d kind of lean in with his shoulder touching the person. There was no arm involvement in these hugs, and his hips and body were usually as far away as possible from the other person. Then he progressed into a head hug, in which he sort of buried his head in someone’s side with no other bodily contact. After that, he started giving real hugs, but mostly on his own terms, when he wanted to do so. But like his language, his hugs are often copies of the one who is hugging him; if I pat his back as I’m hugging him, he’ll pat mine.
The end to the story is, of course, the bear hugs that C now gives some of the time. Both arms, full-on body contact, snuggling completely. He saves those for people he knows and loves. (Everyone else gets the “everyone else” hug, which is a combo head, shoulder, one side of the body hug.) I live for these bear hugs and wish I could bottle them up to give to those who need them. For the longest time, that was what I (selfishly) found so troubling about the way C related to us; I wanted hugs, real, meaningful HUGS. And now I’ve got them to share. ((((HUGS))))
When we finally brought C home from the NICU, our doctor told us we had to keep him cold free for his first year, which translated to my quitting my job and staying home. For that year, my entire social life revolved around nurses and therapists coming to visit C at our home. Once we got the all-clear, however, we started to venture out in the world. At about 2 years old, we decided to try him in play school one day a week for some socialization. After a long visit, numerous conversations with the staff, the big day finally arrived. I brought him to the school, and he happily toddled into the room. He had no words yet, and had only started walking a few months before. I left, anxiety and eagerness fighting for control as I triple checked my cell phone to make sure it was on.
I knew I had to come back and feed him lunch because of his feeding issues, so I went back early to observe. What I saw has remained one of my most painful memories. As I walked in the building, I heard the usual noise that one would expect coupled with something far more disturbing; the sounds of my own child’s cries, which any mother can pick out of thousands of such cries from a crowd of other children. As I approached, I saw him standing in the middle of the room, hands held up, fingers spread, tears streaming down his face. He was nearly hysterical in his sobs and as he stood there all by himself like he was all alone in the world. It was instantly obvious to me what was wrong – his hands were dirty. He hated having anything on his hands, and his frustration was obvious because he could neither communicate it verbally nor could he figure out how to fix the problem himself. “Boy, he sure is a screamer!” one teacher commented. I fought the urge to snap back at her that perhaps he wouldn’t be screaming if anyone had been engaged enough to figure out what he was screaming about.
After getting him cleaned up, we proceeded to lunch, at which all the children happily ate their mini-tacos. I sat on a little chair at a little table, surrounded by little people eating big people food. I fed C his baby food and started crying. I couldn’t stop crying, and was soon fighting back heaving sobs as I tried to decide what to do. The young teachers tried not to stare at me in their complete and utter discomfort. There’s no manual for this; I felt completely lost and alone in the world – much like he had been when I saw him earlier. It was the first of many such choices I’ve had to make for him in is life; ultimately I took him out of a bad situation, one in which he probably could have learned something had I left him in the midst of it, but one where the lessons would’ve perhaps been at too great a cost.
C’s feeding issues are especially difficult for people to grasp. The best way I’ve found to explain it is to say he is absolutely terrified of food. The thought of food can bring up a fear in him so primal it’s hard to imagine it wasn’t born in him. Yet I suspect the trauma of being re-intubated several times as a newborn (he would cough the intubation tube right out as a NICU baby, something the nurses found amazing), combined with a highly sensitive sensory system, a poorly developed tongue, and motor planning problems are the likely culprits.
The issue first presented itself when he was nine months old. A well-intentioned occupational therapist gave him a cheerio, his first encounter with solid food, and he immediately gagged, choked, and vomited. It was downhill from there. Ultimately we found a feeding therapist (who would even know these people existed unless you needed to know?) and we started seeing her immediately.
Apparently, feeding is one of the most all encompassing things our bodies actually do besides sex. All the senses are engaged, our hands must be able to find our mouths (no small feat for someone with trouble getting messages from the brain to the hands), our tongues must be developed enough to move the food around, and we must be able to swallow. When you think of how all these systems work together for us to actually eat, it’s amazing we can all do it.
Many, many people have said to us that we should let C get hungry enough and then he would eat. AHA! If only that were true! There’s a small subset of children who will actually starve themselves to death rather than eat a food that scares them. It’s difficult for someone who has children who simply just EAT to grasp this. C is not a picky eater, but rather the texture, flavor, and newness of an untried food triggers an actual physical reaction that we all know as the “fight or flight” response.
When we started feeding therapy, we were at war in Afghanistan, and I remember seeing pictures of children who needed help in so many ways. I asked our feeding therapist what would happen to a child like C in a country where he couldn’t get this kind of help. Her answer, both abrupt and painful, was, “He would die.”