Aug 11, 2013: This ‘n That

Well, before I forget to mention it, I must tell you that there will be no blog post next week, because it’s finally time for our long-awaited trip to Cambria! However, when we return on 8/25, I’ll post a blog full of pictures and tales of our adventures. It’ll be worth waiting for, I promise! 🙂

Also before I forget, Sam’s Step Up for Down Syndrome walk is coming up in October! We’d love it if you’d join us for the walk, but if you can’t be there in person and would like to make a small donation, we’d love that, too! The money raised goes to Down Syndrome Connection of the Bay Area, which is a wonderful group of people who provide support and outreach for people with Down syndrome and their loved ones. We go to Sam’s Baby Steps class there, and they offer a host of other services and activities that we’ll likely take part in as Sam gets older. Anyway, if you wish to donate to Sam’s walk, click here.

This week was a fairly quiet one for us—at least, during the work week. I had a ton of work to do, between finishing up my grading and doing some editing projects, so that kept me mighty busy. I’ll tell you what: I’m going to be really ready for our vacation when it arrives! Between all the work and Sam keeping me up all night, I’m beat! (I jinxed it when I said Sam was sleeping better, by the way. He’s back to being up every two hours all night long—sometimes even more frequently. Not that I blame him—he’s cutting three new teeth, two of which are molars, so that can’t be fun. But man, am I tired!)

We did have swimming again this week, so that was fun. Theo is doing great at working on his swimming—I’m so proud of him! In fact, I’m going to include a little video this week of Theo swimming and Sam being…well, mischievous and amusing. 🙂 Here’s you go:

We also had feeding therapy for Sam this week. His new speech therapist, Melissa, does some feeding therapy, but she readily admits she’s “not very good at it.” However, she works with a woman who is very good at it, so this week she brought that woman, Judy, along to Sam’s session. Judy gave Melissa (and me!) a bunch of tips so we can work with Sam on feeding. The plan is to do 30 minutes a week of feeding therapy and 30 minutes a week of speech therapy. Works for me! I liked Judy because she seems to take it very slow. Kaiser throws a dozen feeding suggestions at me and sends me home to try them, and they inevitably backfire. And the Kaiser therapist never even tried feeding Sam on her own, to get an idea of his strengths and weaknesses—it was completely focused on parent education. And while I’m all for parent education, I think it’s also very helpful for the therapist to work directly with Sam, at least to get an idea of what he’s doing. Judy and Melissa, on the other hand, worked directly with Sam for probably a good 45 minutes before coming up with some ideas for “treatment” and having me learn what to do. And the suggestions were very manageable. I ended up feeling very comfortable with what we need to work on. So I’d say it was a very positive appointment!

Sam, by the way, is getting more amenable to some solids. He will gnaw on French fries, hard pretzels, and tortilla chips now, and he’ll also gum an animal cracker or a goldfish cracker. He is not, however, getting any more amenable to liquids—he still won’t take a bottle, sippy cup, or straw cup. So I guess I’ll just be nursing him until he’s 30. 😉 Actually, we’re working with him on an open cup, but it’s very, very slow-going. He’ll allow a tiny bit of water in his mouth, and then he drools it all out. But we’ll keep working on it. I’m keen to get him taking liquid in some way by January, as Chris wants to take me for a night away for my 40th birthday, but we can’t do that unless Sam will take liquid in some manner other than from nursing. So I’m motivated to get him drinking in some manner, but we’ll see whether he cooperates.

The week may have been slow, but we had a big weekend! On Saturday morning we had soccer—both Theo’s regular soccer and what he calls “Gavin’s soccer,” which is another group. It was the last day of Gavin’s soccer, so they got medals for participating, which made Theo very proud and happy. And after soccer, we got to go to Gavin’s 5th birthday party, which was a lot of fun! They had it at Pump It Up, which is a big bouncy-house place, and both boys were in heaven! Theo bounced like crazy with Gavin and the other kids, and I took Sam in one of the bouncy houses and let him crawl around, and he had a blast! In fact, he was downright crabby if we tried to hold him, as he often is these days—he wants to be down and moving whenever possible! He seemed to really love crawling on the waterbed-type surface of the bouncy house, and he was playing with the balls in there, too. I also took him down one of the slides on my lap, and he smiled from ear to ear and laughed like crazy! Little thrill-seeker, that one…

Theo actually did really well at Gavin’s party and afterward. Sometimes parties can sort of send Theo into overload, but he did very well—I think all that bouncing was sensory paradise for him, plus being just downright fun! Hmm, if he wants a party next year, that could be just the ticket….

On Sunday, I was hankering for oysters, so we headed over to San Francisco and had lunch at the Ferry Building. I had oysters and raw ahi tacos, and Chris had a bacon cheeseburger. Theo had a PB&J I brought from home (cheaper, and he likes it as well as anything) and fries. Sam had fries as well—he is a fiend! It’s funny; his fine-motor control is okay—not fantastic, but okay. But man, does he get a grip on those fries! He has a death grip on them and will not let them drop!

After the Ferry Building, we went to the Exploratorium, which recently moved from its old home in the Palace of Fine Arts to the Pier. We hadn’t been in quite some time because the parking near the Palace of Fine Arts was always dreadful. But the parking near the piers isn’t as bad, so we decided to give it a try. It was very crowded, but still lots of fun. They have something like 600 hands-on exhibits, and while Theo doesn’t necessarily have the attention span to sit and understand what they do, he loves pushing the buttons and turning the knobs and seeing what will happen. So I don’t think he gets the why of it yet, but he enjoys it just the same. Sam, exhausted from his French-fry binge, napped on Chris most of the time. 🙂

Speaking of Sam, I don’t know whether I’ve mentioned a project I’m a small part of. A group of 100 mothers of children with Down syndrome are contributing to a book of stories about their experiences, and I’m one of the mothers. So, I’ve been working on my piece about Sam. It’s nearly finished, though I still need to tweak a couple of things based on some feedback a friend gave me. But if you’re interested in reading it, click here. Chris is writing a companion piece that will also be in the book, but he hasn’t finished it yet. When he does, maybe he’ll let me put it on the blog. The early draft I read was quite touching. 🙂 They’re trying to get a number of fathers to contribute to the book as well, but most of the men aren’t too crazy about the idea of writing. Chris is, so he was happy to be a part of it. I think his story will make a neat addition, because a man’s perspective on parenting any child is going to be different from a woman’s, so it’s neat to hear from both sides.

Speaking of parenting, I’ve been reading some interesting articles lately. I can’t seem to find the link to the first one I read, but it was talking about how important free, unstructured play is for children—supposedly they’ve linked it to some sort of brain development. (Sorry for the vagueness—I can’t find the article, and I can’t remember the specific development they’ve linked it to.) The other one, which I found even more intriguing, was written by a mother with two daughters who have ADHD. What made it interesting is that the mother has chosen to medicate one daughter and not the other. Why? Because ADHD manifests itself in two very different ways in her daughters. (I so wish I could find the link to this article—it was fascinating!) In one daughter, ADHD manifests itself as hyperactivity—her daughter has a very hard time sitting still and concentrating and being quiet. The mother has chosen not to medicate this daughter. Her daughter seems to be able to make it through the school day okay—not great, but she can restrain herself enough to muddle through. And after school, she comes home and is bouncing off the walls like crazy, having tantrums, and unable to focus. So, to “treat” her daughter’s ADHD, the mother simply takes her to a park or a trail or a big open field every day after school and lets her run and run and run. And after a certain amount of running, her daughter is able to self-regulate enough to come home and do her homework and such.

The woman’s other (younger) daughter is much more able to regulate her activity and stay calm, but she was unable to read. They tried tutoring and all manner of reading strategies, but the girl couldn’t read. The mother finally figured out that the girl would look at the first couple of letters of a word and guess at it, rather than actually reading the entire word. And so sometimes she was right, but often she was wrong. The mother figured that perhaps she was doing this because she couldn’t focus long enough to read each word, and decided to try medication. Within a matter of days, the girl learned to read. And so that daughter is currently on medication, whereas her other daughter is not. And the mother says she’s gotten grief for her decisions on both ends of the spectrum, which doesn’t surprise me.

So why did this interest me? Well, two sets of “experts” at Kaiser have suggested that Theo may have ADHD (as opposed to autism), though he’s too young to know for sure. And honestly, I don’t know. I really don’t. The “symptoms” of ADHD, autism, and giftedness are all very similar and overlap a lot, so it’s kind of impossible to really know for sure what’s going on. But what I do know is that Theo shows some of the traits of all of these. Like the woman’s one daughter, he can manage to keep himself controlled enough to manage situations (such as preschool), but often he’ll come home and go somewhat out of control afterward. This has been happening with swimming, too. He is able to focus and cooperate on swimming, but afterward he’s just a booger for most of the rest of the day. It’s as if it takes so much out of him to work on swimming that he’s just done after that. And frankly, that’s what I expect we’ll see when he starts kindergarten—I know he will work very hard to try to behave in kindergarten, and I suspect he’ll come home and let loose. (Lucky me!)

But also the reading… Theo is a sight-reader. If you try to show him phonics, it doesn’t register with him. He loves to read words, but he does it all by sight-reading. And I hadn’t thought anything of this, as I was a self-taught sight-reader. In fact, my kindergarten teacher told my mom she wasn’t going to teach me to read because I was a “natural reader,” and she didn’t want to interfere with what I had already taught myself. And that was a good decision on her part—I was reading perfectly fine, so why mess with it? And so, when we found Theo was sight-reading, we thought nothing of it—he just takes after me, right? Well, maybe. But it has occurred to me that he can’t really read yet—he can sight-read maybe 40-50 words. And as he goes through kindergarten and actually has to learn to read all words, I’ll be interested to see whether he can do it. If he can’t, I’m going to think back to this article and wonder if the same thing is going on—that he just doesn’t/can’t focus long enough on the word to actually read it. We’ll see—time will tell.

But that leads me into a point I wanted to make about parenting, since I was talking about parenting judgments and such last week. Ever since we spoke to the developmental pediatrician about Theo, we have firmed up our approach to parenting him. Her suggestions were largely things we were doing already, but hearing them backed up by a specialist made us stronger in our conviction that this was the approach we should be using with him. So, I’ll share our approach, in case anyone reading this is in a similar situation of having a kid who doesn’t respond to some of the typical parenting strategies. Who knows—maybe someone will find something useful in it. 🙂

One thing Chris and I have long tried to do is set Theo up for success. By now, we know what types of situations tend to backfire for him, and we try to lessen the effects of them. Mind you, we don’t avoid them completely—doing so would essentially be putting him in a bubble, and I don’t think that would be doing him any favors. But we try to lessen the effects. So if we know a certain situation will be likely to cause him stress of some sort, we look for ways to counteract that stress. And that’s something the developmental pediatrician stressed as well: to focus on positive reinforcement and creating situations where we can reinforce positive behaviors, rather than using a punitive approach. So it’s not that Theo is never punished (ha ha, far from it!), but just that we want to try to make most situations places where he can succeed. So for fun, we don’t take him to a place that will send him into sensory overload and cause him to act out and misbehave (say, a shopping mall or something like that), because then we’re put in the position of having to punish him and creating a negative situation. Instead, we take him to a place where he can be free to roam and explore (what he likes best!) and get a lot of positive attention from us—parks, children’s museums, etc.

And when it comes to activities, we know that certain activities (drawing, puzzles, games that require some sort of visual-spatial processing) are very difficult for Theo and will cause him to act out. So we keep those sorts of activities to a minimum. There’s the theory that if something like a puzzle is difficult for him, we should sit down with him and do puzzles every day to teach him, and I heartily disagree. We’ve tried that, and it creates a situation where Theo is frustrated and misbehaves, which is frustrating for us and creates an all-around negative situation. And I can understand why: If someone forced me to do something I stunk at every day, I’d get surly and uncooperative, too. So when we do try these types of activities with Theo, we keep our expectations low and make sure not to set the bar too high. He doesn’t manage to play the game the way it’s supposed to be played? That’s okay, as long as he made an attempt and didn’t choose to misbehave instead of focusing and giving it a try.

The developmental pediatrician also stressed that timeouts should be used very rarely—only when he’s physically aggressive (which is rare, although he will occasionally smack at us if he’s really upset) or when he outright disobeys (for example, we’ve just told him not to do something and he purposely does it). She said timeouts aren’t very effective for very bright, challenging children, and I have to agree. Honestly, I don’t know if they’re effective for other children—Theo is the first child I’ve had to discipline. (Sam’s too young to require anything more than simple redirecting at this stage.) So I can’t speak for other children, but I can say that timeouts are pretty much useless for Theo. They turn into a battleground, and we see virtually no positive outcome from them. And it was refreshing to hear a professional say, “Yes, I’m not surprised. They’re not very effective for kids like him.” Thank you!! It was very validating to hear, since Chris and I have been saying for years, “Why do people use these? They’re useless!”

Instead of timeouts, we’re to do “planned ignoring,” as the pediatrician said the most effective form of punishment for a kid like Theo is to take away all attention. And so that’s what we do, and I have to say it does seem to work better than timeouts. It sometimes results in a long screaming session from him, but he eventually gives up and settles down, and life moves on. And the screaming session is a whole lot shorter than if we put him on timeout for it….

The biggest part of our parenting these days goes back to that idea of setting him up for success and also the idea of free, unstructured play being important for kids. From what I’ve seen, you can classify parents in two rough groups: those who take their kids to the park and insist that they be doing something you would expect to be done at a park (playing on the play structure, playing a supervised game, etc.), and those who take their kids to the park and say, “Run free and do what you like. Stay out of the street and where I can see you, and it’s all good.” We are definitely in the latter group. I realize this makes us look, to some, like lackadaisical parents who don’t give him structure, but that’s not the case at all. Theo actually has a fairly structured existence in terms of knowing what to expect each day: He gets up at the same time and starts the day with breakfast. Then we play for a bit. Then we take a walk. Then Sam goes down for a nap and Theo gets some iPad time. Then we eat lunch. Then we go to swimming. Then we play. Then it’s dinner. Then the boys play while I work and Chris keeps an eye on them. Then bed. But within that rough structure of our day, we don’t micromanage what Theo plays—we let him have a lot of freedom to choose what he wants to do, and he seems to do well in this type of environment. Sometimes we play outside, sometimes we play inside. Sometimes it’s at a park, sometimes it’s at home.  One of Theo’s favorite things to do lately is just go in the backyard and putter around pretending to be a “worker.” He likes best to do this alone—I think he likes the solitude. So I open the windows so I can keep an eye on him, and I let him putter around out there on his own. And you know what? He does some really cool stuff out there! He uses gardening tools and his toys in creative ways, and he makes up some wonderful adventures and such. It’s really neat to listen to him talking to himself or the dogs out there. And every so often he’ll poke his head in to tell me something, but that time to just be free and do what he wants seems to be invaluable in keeping him calm and centered. The other day, he wanted to go sit out there by himself and eat his lunch, and I told him to go ahead. And he was happy as a clam.

So the same holds true with rules and expectations. I realize there’s the idea that he’s five years old now and needs to be able to conduct himself more and more like a grownup when the situation calls for it. And that is true, I suppose, but if we were to harp on every little infraction in an effort to try to get him to be calm and grown-up, we’d be at him all the time, and we’d be creating a very negative environment. And I suspect he would rebel and misbehave out of frustration—and I know this because I’ve seen him do it. Theo rebels when people nitpick him for  little things…and honestly, I’m not sure I blame him!

So in terms of expectations, let’s take eating. Mealtime is a bit of a difficult time with Theo sometimes. Not always, but sometimes. It all depends on how the rest of the day has gone, really. But at five years old, sometimes it’s expected that he can sit quietly; carry on polite, non-silly conversation; not wiggle around; use his utensils property; etc. Well, in an ideal world, that would be lovely. But we’re talking about Theo’s world, where sitting still is quite a challenge, and using utensils correctly is a fine-motor challenge. And when faced with challenging situations, Theo gets very silly and goofs off—it’s his way of trying to distract people. (Chris and I know this, and the people who worked with him at school found the same thing!) So consider us trying to coach him, at every meal, to meet all of these expectations—we’d be harping on him nonstop! “Theo, sit still!” “Theo, sit up straight!” “Theo, use your fork!” “That’s not polite talk at the table.” “Theo, elbows off the table!” “Theo, back in your chair!” Mealtime would turn into a nightmare…for all of us. So instead, we focus on a couple of behaviors we want to improve, and we’ll work on others once he gets these down. For a long time, we’ve been working on getting him to sit reasonably still for a meal, and he’s improved a lot. It’s been a very slow process, but he’s getting much more able to. And we also don’t allow downright rude table manners—if he puts his feet on the table, for example, we will correct that. But if he eats his hot dog pieces with his fingers instead of a fork? Well, yeah, I’d love it if he used a fork. But if I’m busy reminding him to sit still and keep his feet off the table, I’m going to let the fork thing slide. He’s not going to be 18 years old and still eating with his fingers, I guarantee you. We’ll work on it…as soon as we get the bigger items under our belt. 🙂

The fact that we pick our battles carefully with Theo instead of parenting with a high level of management sometimes seems to make people think that we just don’t bother to parent him—at least, I assume that’s their feeling when people step in and start parenting him for us, which always raises my hackles! In reality, it’s all a very calculated, planned strategy: how to eventually get Theo to where we’d like to see him without crushing his self-esteem by constantly nitpicking him along the way. And I’m confident that he’ll get there eventually. He may not have perfect table manners by age six, for example, but he’ll have them eventually. And he may not be perfectly behaved in kindergarten (ha ha ha, pipe dream!), but he’ll be a very likable work in progress.

I think, too, what it boils down to for us is getting him to where we’d like to see him without destroying him along the way. I’ve read a few places where the sources have talked about kids with autism feeling as if they’re not okay, and feeling as if there is something fundamentally wrong with them because they’re told that everything they do is wrong. “No, you don’t say XYZ in this social situation, you say ABC!” “No, you don’t do DEG, you do HIJ!” And honestly, I can see that applying to any child—autism spectrum or not. If I constantly tell my son that everything he’s doing is wrong in some way, by correcting every little thing he does, what does that tell him overall? That I think he is wrong and not good enough. And that’s something no child needs to feel, in my opinion. So, we walk the fine line of parenting (and yes, disciplining) Theo while giving him enough freedom to realize that we think he’s a good kid and able to make his own choices on a lot of things. Certainly not everything, but a lot of things. If he wants to sit outside by himself to eat for a meal, that’s cool. If he wants to roam around the park picking up rocks and pretending a tree is an elevator instead of playing on the slide, that’s cool.

Are we making the right parenting decisions? It’s anyone’s guess. What I do know is that someone whose opinion I value very highly (and who shall remain nameless to protect the innocent!) has told me on several occasions, “I tried the strict, rigid approach with a very bright kid, and you know what? It backfired miserably. I don’t know what the right answer is, but I know that didn’t work.”

So yeah…strict and rigid, not so much us. Semi-hippie-like and willing to let our kid mess around a bit? Yeah, that’s more us. And hopefully, he’ll grow up to show everyone the awesome person who’s inside him because of (or in spite of—ha!) our parenting. 🙂

Hasta la vista, all—see ya in two weeks!

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