The Way Things Are Supposed to Be

As I’ve mentioned on this blog before, my older son Bowie has Sensory Processing Disorder (SPD). He’s also emotionally volatile and fragile, likely as a result of his condition being misunderstood for so long, but he’s also just a sensitive guy.

My husband, my younger son and I spend a good deal of time just negotiating life with Bowie. Handling outbursts. Avoiding outbursts. Trying to give him everything he needs and deserves to be happy, healthy and successful.

I think, for the most part, we’ve grown accustomed to it. Often people passing us on the street mid-breakdown are astonished at his behavior, and that we appear to be so nonplussed by it. But there are those days when he has one too many breakdowns, and our nervous systems just can’t handle any more. Or, we get a lecture from a stranger about what a shit job we’re doing raising our shit kid. And then I just lose it. My husband appears to hold up okay, but I bet he’s losing it too.

Our younger son Ferris is around the age now that Bowie was when we first started to suspect there might be a problem. And so far, Ferris doesn’t seem to exhibit and of those troublesome traits (knock on wood). He’s a much calmer, more agreeable child. Of course he throws fits, he is just three after all, but it’s nowhere near the level we were dealing with for Bowie.

I find myself sometimes alone with Ferris and thinking, this is how it is supposed to be. This is how it was always supposed to be.

I don’t have to worry about Ferris randomly punching another child. I don’t have to worry about him yelling, “Fuck you!” at another child, or at me. I don’t have to worry that he’ll bite another child, or another parent. I don’t have to drag him kicking and screaming from a crowded public place because he’s completely overwhelmed. I don’t have to worry that he will head butt my face, sock me in the eye or kick me in the teeth.

Yes, Bowie actually did all of these things.

It’s the trouble with having your first child be a child with special needs. If you have another child, you get a glimpse into what a “normal” kid is like, and the whole special needs situation that you thought you had the hang of suddenly seems so very abnormal. 

It’s not that I wish to change Bowie in any way. He is my son and I love him 100%, difficulties and all. I never let my brain get to that place where I start to wish he were different. I stop those thoughts dead in their tracks. Because that’s not how I feel.

Sometimes I just wonder what life would have been like for us, what life could have been like for Bowie, if we weren’t dealing with SPD. It would have shaped our family so differently. But would that have been a good thing or a bad thing?

And how do people cope with larger issues? Bowie’s SPD is no walk in the park, but it’s pretty low on the scale of special needs in kids. What is it like for people who have it a little harder than us? I feel like I should just be grateful that Bowie is difficult, yes, but manageable.

I’d love to hear from other parents of kids with special needs. Or people who are friends with them. Do they ever get caught up in this “what if?” thinking? And do they feel mass amounts of parental guilt because of it? Is it taboo to talk about your other child(ren) as “easier?”

Just some stuff I’ve been musing on lately.

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I Don’t Think I Know What I’m Doing Anymore

Bowie’s different than most kids.

He’s super emotional and sensitive and he’s like that most of the time. And he’s been that way for most of his life.

His response in a fight or flight situation is always to fight.

We’ve been told over the years that it’s his SPD. He is much more easily annoyed by things that you and I can deal with, or just plain don’t notice. A breeze. An itchy underwear tag. The hum of a truck parked outside of his classroom. Bright lights. A ticking clock.

One of the things that really gets him going is when another overly energetic kid gets too close to him. Makes too much noise around him. Pokes at him in some way. And continues to do that after Bowie has asked them to stop, which we’ve fought so hard to tell him to do over the years.

Yesterday he hit a kid on the head with his lunchbox (which is metal, btw) for following him around the schoolyard after Bowie had asked him to leave him alone. He told us he didn’t see an adult that could help him, and in his own kid words he told us he did what he had to do.

To add insult to injury, this is a kid that is not in his class this year, but was in his Kindergarten class and his first grade class. A kid that he has a love-hate relationship with. Most of the time they’re buddies and get along great, but when this kid, one of the “overly energetic” types I mentioned, does something Bowie doesn’t like, Bowie responds violently.

He is the roughest with those he loves the most, but how do I explain that to this kid’s parents? And now, after two full years of explaining the whole SPD situation to them, and apologizing profusely after every incident, and doing my best damage control and sucking up to them and planning afterschool playdates so they can “learn to get along better”, it has happened AGAIN. More violent behavior.

There comes a time when sympathy for Bowie’s situation runs dry, and he’s just The Kid That Hurts Other Kids. It’s easy for us to tell him 100 times a day to think before he acts, but not so easy for him to actually do that.

He’s rough with us at home too. All three of us. And we take it, over and over again, because we are so familiar with how hard it is for him to navigate life. We’ve seen him at his most tender times, we know how sweet and loving he can be when he’s got the energy for it. But, most of the time, we generally just don’t like being around him. He feels the safest around us, so he lets all of his emotions run wild in front of us. Anger. Frustration. Sadness. Unfortunately, those are the emotions he goes to first.

So, I’m starting to wonder, when is a kid just a difficult kid, and when do more drastic measures need to be taken?

He’s been in and out of occupational therapy for his SPD for years. And it helps him, it really does. But maybe he needs talk therapy. Maybe all those years of the adults in his life punishing him for just being himself has done some damage. Maybe it makes him depressed that there are kids at his school that are too afraid to play with him. Maybe he’s starting to turn some hatred inward because he’s so out of control of his own impulses.

All I know, is I remember the first time I laid eyes on him, and he lay in my arms so peacefully, just staring at my face as I cooed at him. So calm. I want to rewind and start over. Do it differently this time. Because surely it’s my fault that he’s like this now.

My sweet, quiet, calm boy is still there. I still see glimpses of it once in a while. But life has really got him down lately. And I don’t know what to do.

Bowieatbeach

Happy New Year

second grade

I have a second grader, you guys. A SECOND GRADER. Parenthood is the wildest of wild rides, and the absurdly fast rate at which your children grow is part of that wildness. It’s SERIOUSLY like you give birth, and then you blink your eyes and they are feeding themselves, totally potty trained, reading books, losing teeth, riding bikes, and all the other surprises that lie ahead.

Yesterday was the first day of second grade, and it started off with a bang. Well, a shake. There was a pretty sizable earthquake across the bay, and we felt a little rumble out here at the beach. I was sitting on the couch, trying to enjoy my cup of tea, and I felt the room rumble. I got prepared to yell at my kids to get back to eating their breakfast, and looked at them to find them eating their Fruit Loops like perfect angels.

The day seemed to go pretty well. He was also in an after school program for the first time ever, which has him in school until 6pm, which I worried would be too long of a day for him. But, all things considered, he held up pretty well.

I spoke today with his teacher about his SPD and all of his quirks, and she seemed really positive, and eager to help. So, I’m feeling really optimistic about this year. As you might recall, last year was a total drag and he had a really hard time. We’re hoping things are much smoother in second grade.

SECOND GRADE. You guys.

The Specialness of One’s Needs

I know that a while back, at the beginning of the school year, I was all sunshine and rainbows about first grade and how well I thought it would go.

That’s not exactly the case anymore.

Things haven’t been going well. Bowie didn’t react well at first to the teacher and her methods (and truthfully neither did we). He has a hard time completing his in-class work in a timely manner (compared to the other kids), and it’s been a real hot button issue, apparently.

A meeting was requested with the student-teacher coordinator and a school counselor. They have a record of all the SPD stuff from last year, so we just discussed where he was at, how things were going. And they asked us to have him re-evaluated by his OT, to see where he was at with his sensory issues.

I felt kind of ridiculous when they asked how long it had been since he saw an OT and since we had concentrated on his therapy, and I was like, oh, um, gee, well I suppose it’s been a few years. Parenting ball: dropped.

It was unexpectedly really nice to go back to see the OT, even though it meant my kid still has issues. It felt comfortably familiar. I feel safe at the OT. She understands him, she understands us. All his little tics and habits and antics seem normal to her, like no one else in his life. And she’s got answers!

As it turns out, Bowie has developed a bad grip on his pencil. And it’s causing motor-coordination issues. Something that I didn’t even know to look for, I’m not an OT or a teaching professional, so I would never have known it was an issue. I’m a bit surprised it wasn’t brought up before, and I’m actually thankful that the school made us visit her, because that’s the only way we’d ever have known!

Intelligence-wise, he’s right where he needs to be. Even excelling a bit. So, no worries there. As his OT puts it, with his current grip, he’s just getting too tired when he writes, and he needs to stop and rest and take breaks. Something not entirely conducive to keeping up with his peers. So then he gets reprimanded. And his peers see that, and use it as ammo later. And he acts out.

There’s still a major sensory component. And we’ve added small things here and there in the classroom to help him out with that. The good news is that it’s all fixable. The bad news is it’s to the tune of $500 a month for the therapy, which we just don’t have right now. And insurance won’t cover it until we meet our deductible, but the OT only wants to do sessions until winter break, at which time we will have met the deductible, but therapy will be over.

So, yeah.

The best news is that he likes what he’s learning. He likes to read, he likes math, he likes science. And he’s really smart. I know every mom says that, but really, he is. I mean, I’m not talking ‘gifted and talented’ or anything, but he’s got critical thinking skills, and he can extrapolate on ideas, and I’m just really proud. That’s all.

I hesitate to call him “special needs”. Or to treat him that way. Because there are so many kids out there with much more serious special needs than him. But, when you get the “you’re a terrible parent” stare down from a bystander as he throws a sensory fit in the middle of the farmer’s market, then I feel “He’s special needs.” right on the tip of my tongue.

We do our best to support him daily, hourly, by the minute. But we are also human beings. And the name-calling, the fit-throwing, the hitting, the pushing his brother around, it gets to us sometimes. Being back at the OT means being back in the care of someone who knows how to make this right again. Knows what he needs to bring him back to center.

He didn’t turn the corner sensory-wise until after he’d turned 2. Before that, he was a “normal” baby, no issues to report. He was rarely sick, he was developmentally right on, he was happy and social and outgoing.

So, the change was so abrupt for us. But, we took it in stride. This is what he needs right now, we will do this for him.

And then he had another really great year. Kindergarten was a complete dream for us. Finally he’s acting “normal”, he’s having a “normal” school year, everything is “normal” again. To have first grade not only go so poorly, but to have it going so poorly almost immediately, is a big parenting blow to the gut.

As much as I hate the label, he is special needs. He needs special things from us every day. And from all of the other adults and children he interacts with. For his world to feel right, he needs special things. And as much as I hate to admit it, he’s different than other kids. Even so much different from his brother. The way you need to approach Bowie to ask him something or tell him something is different than it is with other kids. It can be pretty exhausting to deal with that every second of every day, but we are here and we are doing it. I can only hope when he’s grown that he can see that we did our very best. And I hope that by then he’s not so “special” anymore.

bowie swings

First Grade So Far

first grade

We have a first grader in our house now. A FIRST GRADER. We have now completed week one back at school, in the new first grade routine. A rocky start, but not as rocky as the start of the school year last year. And last year’s start was better than the year before. Progress.

I recently acquired a ton of new readers, so I will take a brief moment to explain our kiddo’s situation a bit. When he was in preschool, we were having major issues with his behavior. He was being very aggressive toward the other kids, and also toward us, for no apparent reason. After some meetings with the preschool director, lots of reading and research, and some visits to an occupational therapist, he was diagnosed with Sensory Processing Disorder (a good place to read up on this is here).

When asked why he was pushing or hitting other children, he’d respond with, “I thought they were going to bump into me.” Or, “I was afraid they would step on me.” He was so sensitive about his body-in-space issues and his personal space bubble that he was trying to avoid being hurt or touched by taking matters into his own hands, the only way a 3 year old could figure out how to fix his environment to suit him.

So, we saw some therapists, tried some intensive therapies, changed some things at home, and he’s made amazing strides. He regressed a bit when his younger brother was born, but we’ve made progress since then too. He’s still very sensitive to his environment, and has trouble regulating his emotions.

Calling names, swearing and screaming have replaced the hitting and pushing. The verbal has replaced the physical. For example, now if someone comes “too close” at school or on the sidewalk, he says, “They’re dumb.” Or something to that effect. Even though he doesn’t know them, and they haven’t done anything.

At first, I was just glad he wasn’t hurting other kids. But now, I’m not sure it’s any better. With the physical stuff, at least we could point out that not a lot of other people go around hitting and pushing everyone around them. But with the language? People call each other names all the time, even just as a joke. I’ve had to make him stop watching even certain G-rated movies because characters are going around calling each other idiots and morons. And swearing? I can curb my language to the absolute best of my ability, but how do I keep him from hearing it in public? People walking by our house on the street are yelling swear words. So, the language is proving much more difficult to correct.

I think he’s doing remarkably well in first grade, considering what an adjustment I’m sure that it was for him. We always said we were going to make him do workbooks and reading exercises all summer, and we were going to spend the last few weeks of summer vacation getting him back on his school year schedule, with an earlier bedtime and earlier rise time, etc.

HAHAHAHAHAHAHA.

Between the move taking over our entire month of July, and his complete and ugly unwillingness to do any of the above, we didn’t do much of that. But August 18 eventually showed up at our doorstep anyway. And he had to wake up at 6 am, and he had to eat breakfast instead of zoning out in front of the TV. And he had to get dressed and then walk to school, instead of, you know, zoning out in front of the TV. He doesn’t respond well to transitions. Which is a total understatement. I mean, the kid basically shuts down when we ask him to change into his pajamas at night. And this was a pretty big change. So, I feared the worst.

The first day went well, though he was a bit grumpy and exhausted afterward. The second day was ROUGH. He said “shit” a few times and ended up in a time out (which I’m not wild about, but it’s her classroom, so *shrug*). I took away some privileges for the afternoon because of the swearing, so it was a fitful, screaming, name-calling evening. The third day was better, but he told me later that his shoes kept coming untied and he had lost his lunch box so it was “such a horrible day!” Day four was good. Normal. Got his work done, didn’t get in trouble. Day five was better but still rough, I think he was just tuckered out. We went for ice cream after school to celebrate the end of the first week. He got called a name by another kid as we walked to get ice cream, and was incredibly emotional about it. I sympathized, but also reminded him that he does that to other people. Which he didn’t really respond well to. But, he was very well-behaved that afternoon. Perhaps because of the promise of the weekend ahead of him.

ice cream

I hope this week and the weeks to follow go just as smoothly. I hope he doesn’t get too comfortable and start acting up. But as far as I can tell, the wrinkles in his personality caused by the SPD are starting to smooth themselves out. And he’s maturing into a great student. His teacher and I just take things one day at a time.

Now, his behavior at home…that’s another story for another time. But hey, one step at a time.

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Progress

I haven’t talked about it a whole lot on here, just touched on it once or twice, but Bowie was diagnosed last summer with Sensory Processing Disorder (SPD). He’s a mild case, I follow an SPD parents support group on Facebook and you wouldn’t believe the kinds of issues some of those poor parents are going through! But, he’s definitely got it, regardless, and we’ve been trying some different therapies at home to work through the behavior, and to improve his behavior at school because, Kindergarten is fast approaching, GOD HELP US ALL.

I wanted to talk here about a therapy we recently completed called the Wilbarger Brushing Protocol. The basic gist is you take this soft-bristled brush, and you brush their whole body with it (in a specific way, so it doesn’t hurt them). You do this every hour and a half for 2 weeks. YES, you read that right, every hour and a half, except when they’re sleeping. This is why our OT had us doing it over winter break, so we wouldn’t have preschool to contend with.

This makes for a pretty hectic couple of weeks. You have to remember to bring the brush if you leave the house, and wherever you are, whatever you’re doing, you have to drop everything and brush. So, we brushed in restaurants, stores, Christmas parties, the side of the road, you name it. And it was so hard to stay motivated in those last days, wondering whether it was even doing anything for him. Made even more difficult by the OT saying, “It might make a difference, it might not.” Also, we felt a little ridiculous doing it, and I’m sure it looked ridiculous to other people watching us do it, but when it comes to making progress with Bowie, we’re not shying away from anything. It was two weeks out of our lives with the likelihood of improvement. So, of course we did it.

The therapy itself is meant to help reduce some of the more problematic responses that sensory kids can have to their triggers by kind of desensitizing them to it. For some kids, it changes their whole lives, but for some it doesn’t make much of a dent at all. I thought maybe it wouldn’t help Bowie that much, because being touched in and of itself isn’t one of his big triggers. The OT didn’t explain that it can help them with so many other issues.

[The brush:]

We noticed some minor changes, nothing to write home about. But, online recently I ran across a checklist of items you can expect after the brushing therapy. And, I was astounded! We had actually made quite a bit of progress, and it was really showing, I just didn’t know to look for it. Among the things he made drastic improvements on were more motivation, less irritability, less rigidity, better sequencing, better attention span, less impulsivity, better transitions, better tolerance of grooming, more touching, better repertoire of foods, better communication, better eye contact and improvement in fine motor activity (specifically handwriting).

I never would have noticed much of this, it was so subtle, but now that I know what I’m looking for, I see signs of improvement all over. Just as an example, the preschool director always looks the kids in the eyes and says hi to them when they sign in for the day. She says it gives her a chance to connect with each child, and it improves social skills. For a while, she had to really coax Bowie to let her see his eyes, and to look at her and tell her how he was doing. But, lately, he’s looking right at her, and he’s excited to see her, and often he’s got something to tell her about his outfit or his brother or his morning, stuff like that. Such a small, small thing, but definitely falling into the “improved communication” and “improved eye contact” categories.

And with handwriting, not that he was ever really bad or really good at writing his letters, we’re just beginning to teach him that, but he would get too frustrated that his letters weren’t perfect, and he’d quit rather than practice. (In fact, seeing the point of practicing with many things is difficult for him. Like his mom. Ahem.) But lately, he’s writing letters all over the place, and he’s really curious about which letters make up which words. He’s writing a “B” for Bowie and an “F” for Fox every day at preschool sign in. And I gotta say, they look great for a 4 1/2 year old with no formal instruction. He’s able to get past them not being perfect, and he’s also patient enough to draw them more slowly, increasing the odds they’ll turn out well.

The other biggie we’ve noticed lately is the eating thing. We really struggled for a long time with Bowie’s eating habits. I’ve documented that one on the blog many, many times. Picky eating is a pretty common problem with all kids, but especially sensory kids. Most kids will outgrow picky eating after a few years, but Bowie still struggles with it. The good news is, he’s trying new foods left and right these days. And lo and behold, actually enjoying some of them!

Before, where we’d have to put the new food on his plate and ask, nay, demand that he at least try it, now we have an eager kid who sometimes asks to try the new food while I’m still cooking, before it’s even on the table! He doesn’t always like the foods, obviously, but the willingness to try them is GIGANTIC progress for him.

The other day for lunch, we made some simple skillet hamburgers. We didn’t make Bowie one, because he’s never enjoyed meat at all, let alone beef, ground or otherwise. I made him a little plate of foods he would like, and we all sat down to eat together. Imagine my surprise when he asked me for a bite of my hamburger. And imagine my surprise when he asked for another bite. And IMAGINE my SURPRISE when he asked for his own whole burger!!! So, a few days later, we made them again for dinner, and we made him his own burger and he ate…

…THE WHOLE THING.

I never thought I’d see the day when he not only asked to try a food he hadn’t liked in the past, but also thoroughly enjoyed it.

The next day, he was chattering away while I made lunch, and he said to me, “Have you noticed that I like hamburgers now?”

Yep, kid, WE NOTICED.