Tuesday, May 31, 2016

What Therapy Can and Can't Do

Ethan, almost 3, with one of his awesome therapists

The other day I was organizing some files I'd been meaning to tidy up for, let's just say it, years, and I came across a bunch of sheets from the days when Ethan had therapy at home. This seems like eons ago, but there was a period of about 12 months when he had visits from an ABA (applied behavior analysis, an autism-specific therapy) therapist, speech therapist, and occupational therapist here four days a week (and the other day we went to outside OT and sometimes speech).

After every one of these home visits the therapist filled out a sheet summarizing what had happened in the session and including tips for carrying over the lessons learned in everyday life that week. As you can imagine, it's a big stack of papers, but I've hesitated to get rid of them because they so specifically document where Ethan was between the ages of two and three (and how far he's come) as well of all of the milestones, struggles, and strategies we went through that I for the most part would have forgotten.

As I read through some of the papers I came across issues I'd forgotten Ethan dealt with and challenges he has to this day. I was reminded of two things:

Therapy for a child with autism can be very, very beneficial.

Therapy for a child with autism will not remove the core issues that make the child a child with autism.

Speech therapy will, most likely (thankfully!) help your child to speak but won't necessarily improve the desire to communicate.

Occupational therapy may help your child to have (for example) more precise fine motor skills but doesn't change their low muscle tone that caused the lag in fine motor skills. This was a really difficult one for me to understand because when you hear "low muscle tone" you think it's like going to a gym, and therapy sessions are somehow improving tone. But low muscle tone doesn't involve a muscle responding to a stretch, but muscles that are slow contract in response to a stimulus and don't maintain the contraction as long. That's neurological, and it's not something you just "stamp out" in some therapy sessions.

ABA therapy most certainly is not going to make your child "less autistic." Really, the most classic form is essentially teaching your child to respond in a certain way due to repetition. That's actually one of the problems I have with it -- for some people. I do think it can be helpful in some cases. But there is nothing intrinsic about it. There is nothing explaining "why" a child might want to respond in that way.

Even play therapy: you can go about modeling a certain play situation for a child with autism. But if it's an area where they really struggle, most likely when they sit down they will imitate the play scenario you modeled (i.e. playing with a farm and animals or dolls), but still not really know how to play.

Sometimes for kids with milder forms of autism I do believe therapy can serve as sort of a bridge that helps cover gaps they had in skills. It's the little push they need, and as they grow and learn and are surrounded more and more by other typical kids, they pick up more and more. Sometimes the brain does "rewire" to some extent.

Other times therapy may not transform a child but may play a very important role in reducing certain behaviors. Sometimes it's providing the structure and order that autistic people often crave.

I'm a huge fan of therapy like the "Floortime" model -- where you get down on the floor and join in with whatever your child is doing, because the point is to engage the child and interact with the child and most of all encourage them to want to interact with you. Floortime I think comes the closest to addressing that most prickly issue of motivation.

One of Ethan's therapists used to say the first thing they like to teach in speech therapy is that "my words get me things." Once children understand that, they become infinitely more motivated to speak. Frustratingly, though, motivation comes from within -- and aside from that very basic desire every kid has to want a cookie and some milk, in most cases it's not something therapy can really create.

When it comes to autism and play/interaction with others, there is a point when therapy can only do so much. There is no real way to motivate your child to want to join in and play with other kids. No amount of therapy, really, can make that happen. This is the point that can be really difficult for parents who are new to this. It feels like it should be part of the package. It's something not really explained when you start out, or maybe you don't really take it in. The therapy is there to help...to alleviate behavior problems, to encourage your child to communicate, to give your child tools to get by in school and in life...but it's not going to change your child into someone he is not.

That's not to say that amazing things don't happen. Ethan this year suddenly decided he wanted to play with kids on the playground and kids next door. I have no idea why. There was nothing we did to make it happen. I'm thankful for it, but I can't explain it. It's just part of the amazing mystery that autism is.

So I will say -- therapy can be wonderful. Therapy won't solve everything. Some things may not change. Other things take time. With autism, you truly just never know: which can be a frightening thought, or a glorious one...or a little bit of both.

Tuesday, May 24, 2016

When the Motives Feel Wrong

We all know that someone can be acting the "right" way while having hidden selfish motives.

Autism can sometimes take this to an all-new level, and I'm not sure how to feel about it.

For weeks now Ethan has been begging me to stay over at the grandparents' house. Both kids love going to sleep over with their grandparents on either side of the family. And yeah, like most kids part of the fun is knowing your grandparents will let you get away with much more than your parents will. It's their job. For Ethan, this means in particular at my parents' house, he gets not just a little more screen time, but HOURS of screen time. His experience with Gramma's iPad has been, well, legendary.

"My record is six hours!" he bragged the other day. "We need to go back. I want unlimited screen time!"

Okay, so here's the thing. I get that he's burned out on the school year. Aren't we all? I get that he needs some downtime, and what better place than at the grandparents'? But there's something about him only wanting to go for the screen time that rubs me the wrong way. It's like when he walks in the house and barely says hello, then asks where the iPad is.

I know that he loves his grandparents. I don't like feeling as if he's using them to get to a piece of technology.

Then I try to remember -- he's not a typical kid in this respect (or then again, maybe he is, with the way kids are with technology these day) and I shouldn't only view him through my typical mind.

So where is the balance?

The same theme runs through our days that involve baseball games and his Wii time. I just wrote about this. He HATES not getting his allotted screen time because he has to stop early to go to a game. Often, I'll say if he has a good attitude he can have a little more time when he gets home. So he'll get home, walk through the door, and I'll want to talk about the game for a minute. One night he'd gotten a great hit, his first really good hit, and his team had really slaughtered the other. He walked up to me with a gleam in his eye. I thought he was excited about what had just happened.

"Wasn't that an amazing hit?" I asked.

"Time for Minecraft?!" he shouted happily. He'd already moved on.

There are times when I feel as if everything is just a means to one end: screen time. And with summer coming, this concerns me. I know this is the world we live in now. It's not just Ethan, it's all of the kids, even Chloe. The allure is so great, and it's just so easy.

I don't think technology is evil. I just wish sometimes my kids, and Ethan in particular, would get excited about other things. Something feels wrong about promising him he can have screen time if he plays a baseball game, or goes outside and explores.

Again and again I've learned, with kids (typical or not), it's extremely difficult to create motivation. I can't name the number of times I used to try to make Ethan want to play properly with toys or to be interested in other kids. My overtures never worked. While he's still not a big fan of most toys, he did start becoming interested in other kids, and there wasn't a single thing I did to make it happen.

I know there will be many times when the kids do what they do because they "have" to, not because they want to.

Sometimes that's just the way it goes. Sometimes I want more for them than that.

Right now all I can think is to keep exposing them to new things...to nudge but not push to hard...to allow them time for what they truly love right now while trying to create space that just might fill in with something else, too.

And that's about all I've got.

If anyone else has thoughts on this, I'd love to hear them!

Thursday, May 12, 2016

Yes, My Car is a Mess. I Have Kids.

No, this isn't my car. On some occasions, it could have been, however.

Years ago at one of my first "real" jobs I went out to lunch with a co-worker who was in her thirties and had young children. She'd offered to drive, and after opening the door I wondered where I was supposed to sit. On the seat was the largest gathering of Goldfish cracker crumbs I'd ever seen. There were crumbled up fast food bags and an assortment of sippy cups. Her office is neat enough, I thought in amazement. How does something like this happen? Gingerly I climbed in, hoping I wouldn't see something alive scurry under the garbage.

Now I understand. That point was more than driven home at the beginning of the school year when the principal of Ethan's school (who does not have children) opened the door to our van to help Ethan out. There was this split second of visible recoil as she caught sight of our back seat. Ouch.

What had "happened," as I had wondered long ago, was kids. Some of us are neat freaks. I am not. However, I have some basic standards of cleanliness. Somehow in the car, those limits get pushed.

I started to analyze, because it's what I do. I was reminded of an autistic man in the Autism in Love documentary (highly recommended!), a scientist who liked to create equations to explain things. The way to determine if a woman was right for him, he explained, related to an equation he'd formulated where looks and personality were about equal, but weighted twice more than either of those was how she treated him.

I'm guessing there are a lot of equations or theorems that explain every day life. Take traffic jams. There has to be an explanation for why whenever you're running late, you hit one, or come up behind a "slow poke." It's obvious -- when you're late, you drive faster (some of us, ahem, drive maniacally). Inevitably you're going to catch up to either someone slow or a line of traffic, and then lament the unfairness of the Universe, when really, we brought it upon ourselves.

As for cars and kids, I think this state of car uncleanliness can be explained by two "laws." Once you have kids:

1. What gets brought into the car grows exponentially larger.

2. The ability to remove what was brought into the car grows exponentially smaller.

To elaborate:

Let's talk about what ends up in the car when you have kids vs. when you do not. My first car (in college) wasn't spotless, but mainly contained some stray school papers and maybe a Dunkin' Donuts cup.

Right now, in our van, we have candy wrappers from candy Anna sneaked into her "lair" in the way back. A notebook where she may or may not have been doodling hearts with a boy she likes name inside them. The church bulletin leftover from Sunday that she was drawing on. Lip gloss. In the middle row is Ethan's and Chloe's zone. Ethan has a Simon electronic game he keeps bringing in the car to play on his way to school, as well as a number of books he grabs and reads at various times. There's leftover Goldfish for our last "we have to leave right away and there wasn't time to eat at home" excursion. Several rocks he found somewhere that he's saving for something. A pair of nunchucks from a Ninja birthday party he attended three years ago. (No lie -- he brought them to the car at some point; I don't know why). And then there's Chloe's stuff: the sippy cup she had to take to the car and then dropped on the floor where it rolled to No Man's Land under the seats, the umbrella she insisted on carrying even though the rain had stopped last week, the craft from playgroup that later fluttered to the floor, the toy she had clutched her hand the last time we left the house, donut crumbs from the donut she was still eating when we had to leave a party to get somewhere else quickly, and a large assortment of other "emergency" books and toys we have stored in case we are stuck somewhere boring for an inordinate amount of time.

And among the items in the front are there are some napkins that could be used for all variety of unfortunate incidents and a diaper bag we barely use anymore but am too nervous NOT to bring along.

I know what you're thinking. The answer is simple. Just make sure to do a quick sweep of the car before you go inside every day and clean up all this junk before it gets out of hand. This brings me to point #2, or why the ability to remove what was brought into the car decreases, significantly. Case in point:

We pull into the driveway at home. I tell my kids (or at least the two older ones) to pick up their junk. Then I gather my own. In the 30 seconds it took me to walk to our outside garbage can, Anna and Ethan are gone. Usually they've picked up about 25% of their actual mess. I could take the time to gather the rest out, or go chasing after them to come back, but Chloe is yelling to get out of her seat. And I'm trying to pick up some of her mess. Usually I'm crawling under the seats to prevent the dreaded "sippy cup filled with milk that's been in the car for three days" (the horror!). I only have so many hands to carry her "treasures." If I let her out of her seat she decides it would be a fun game to explore "what it's like for a two-year-old to drive" and will rush to the front seat to start pushing various buttons.

Okay, so I could put them all inside, then clean out the car. Only someone's got to eat, someone's got to go somewhere soon, someone is fighting with someone else over who gets to do Minecraft. Chloe will stand at the door calling for me to come back. I could order them out there to clean, but will have to stand over them like hawks, barking out orders, because kids just don't see messes.

How about getting out and actually vacuuming the car, doing this thing right and feeding quarters into a machine at a gas station? First, these things have to be done alone. Chloe would be petrified by that screaming monstrous tube sucking things out of the car. Never mind a good portion of the mess happens to reside under her car seat (shudder!). So I need to find the time to go out and do this by myself. Only -- aside from the people who love to clean and really feel so much peace when they're cleaning, how many other moms do this in their spare time? If I don't have the kids with me, I'm more likely to run to Target and pick up all of the items I always forget, in blessed silence. Or maybe get together with a friend for dinner. Do I want to crawl sweatily around my car at 7pm, whipping the vacuum hose frantically around, trying to coax out every last crumb before my time runs out?

And then there's the fact that you can do all of that and three days later it may look like you never vacuumed.

So yes, you could say a part of this comes down to just not having enough gumption. There should be an equation about effort and resistance. The more effort something takes, the more resistant moms are to doing it. Why? Because we're tired. The importance of a car being neat and clean is directly related to the amount of energy a mom possesses...which usually is not much.

And so, I have joined the ranks of one of "those" people. And every once in a while, I do get a flash of what my car really looks like. A while back while working on a freelance project I gave a co-worker who doesn't have kids a ride in my car. I saw the way she climbed cautiously in, hoping she was safe, and I knew. I let the embarrassment wash over me for a moment. Then I took stock and cheered that no, there was nothing alive and nothing moldy. That's where I draw the line. There will be a time down the road for a clean(er) car. These days, if I ever get the time, I'm not going to vacuum. I'm going to read a book.

Sunday, May 8, 2016

Baseball Season is in Full Swing

This past week it just.would.not.stop.raining. Even better, Ethan had not one but three baseball games.

Game one, the sun actually came out for a few minutes. That would be the last time I'd see it for five days. Chloe kept inching dangerously close to the small ponds that had formed under the playground swings. Game two involved temps in the forties and bone-chilling winds. The woman next to me in the bleachers had wrapped herself in a blanket. Ethan stood in the field jumping up and down, trying to stay warm. And game three began with an outright downpour and me wondering what it might take to actually postpone a Little League game in our town. Another game and a girls' softball practice were happening simultaneously as the heavens opened above all of us. People sat huddled under umbrellas looking miserable. This time Chloe did indeed walk through a puddle of epic proportions rather than around, gleefully.

Yes, spring in New England is not for the faint of heart. And weather this baseball season has been sub-par. But that being said, we are halfway through now, and I have been pleasantly surprised. We were not sure how the leap up to "Double A" ball was going to be for Ethan. They actually keep score now. You can actually strike out. These kinds of things have been problem areas in the past. Five games in and Ethan has probably only gotten about three or four hits. But the kid is having fun. He gets up to the plate, pounds his bat on it and assumes his batting stance. He (at least attempts) to cleanly field the ball. At the end of the game he willingly goes and slaps the hands of kids on the other team ("Good game! Good game!..."), even if his team lost.

Our only issue (there seems to always be at least one) this time around is actually getting to the game. Minor qualm here: the games seem to be at the worst possible time. I'm sure if I think about this, there is no great time to have a weekday game. But 5:45 is pretty difficult. Especially if they tell us to get there 20 minutes early to warm up. Especially if we normally eat dinner right at that time. And especially if your child really, really needs to have his video game time after school before he is motivated to do anything else.

We are counting down the days until third grade when Ethan moves up to the school behind our house and will have a chance to walk there and back for the first time. Right now, he has a very long bus ride. After a full day of school and dismissal at 3:25, he doesn't arrive home until a little before 4:15. We've learned at that point, he NEEDS to decompress and do something for him. That of course, means WiiU and Minecraft or whatever game he's into at the moment. We give him an hour before dinner to "recharge."

Only -- with baseball games, he no longer gets an hour. His video game time is cut in half. In Ethan's world, this is criminal.

I totally get it. I know what it's like to get home after a long day only to realize after sitting for a moment I have to rush somewhere else. And so, I try to be understanding. And accommodating. And patient. This is sometimes easier said than done.

First, we make sure to use the timer. Always the timer, with 10 and five-minute warnings before time is up. I steel myself for the comments, because inevitably when Ethan has to stop playing Wii early, he immediately bursts out with all sorts of overtures about hating baseball, not wanting to play, wondering why he has a game and why we are forcing him to do this. If he said this all of the time, I'd be concerned that we really were pushing him to do something he doesn't want to do, but he always stops after about five minutes. Then he wants a snack. Only I tell him he has to get on his uniform before he has a snack (the other day I finally got smart and told him he had to put on his uniform BEFORE he started playing Wii. Duh!). So I give him one snack to have as he's getting ready in the house and we are frantically trying to find his glove, helmet, etc., and another for the car. That's the thing. We can't eat dinner first. Just can't, at least not at this stage in his life. Screen time rules. So I ply him with snacks so he's not completely sapped of energy for the game.

After the game (even the six-inning games they play at his level go until almost 8pm!) he comes home, inhales his dinner, and wants his other 30 minutes on Wii. We attempt to accommodate this. He lives for this. I feel as if it's the least we can do, when the kids been standing in a wet field freezing for 2 1/2 hours. So we've made this thing work.

I can't really complain. He's doing pretty well. He seems to enjoy baseball and if he's in the right mood is even inspired to do better. We've been spending some time watching Red Sox games (I'm already training Chloe to say "Yankees, yuck!") and he gets really excited to see them make great defensive plays or get big hits. When someone strikes out I'll always throw in something like "See, he's not throwing a tantrum" just to get that point across. I'm waiting for the day someone does argue and gets thrown out of the game ("See? They had consequences for their bad behavior!").

Already he's talking about how he can't wait to play in the next level, to move up to Triple A in a few years. In Triple A, according to Ethan, they get to steal bases. I've gently reminded him that Triple A means nine-inning games. I thought about that briefly and how that would work, with this whole screen time thing. Then I remembered Ethan will be walking home from school and back home almost a full hour earlier. Maybe we could squeeze in the whole block of screen time then. If he wants to do it, we'll make it work. We just need to be creative and flexible. Like we're always telling him to be.