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Structured Learning

What’s Your Autistic Toddler Like Now? (Part 2)

by Tim on February 22, 2009

This is Part 2 of our series “What’s Your Autistic Toddler Like Now?”, a journey through what’s happening these days in the life of our autistic 3 1/2-year-old son and sequel to our very popular original article, “What’s Your Autistic Toddler Like?”.

Note: Wherever you see “DSM-IV” below, this means that attribute is part of the diagnostic criteria for autism spectrum disorders in the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition or DSM-IV. In medical terms, a specific combination of those DSM-IV criteria is what brings about a diagnosis of autism.

Same obvious disclaimer as before: We are not advising you on how to evaluate your child. Go get them evaluated by professionals with extensive experience with autism. Don’t just rely on some random people on the Internet – namely, people like us.

If you haven’t already, go back and read Part 1. If you have, let’s continue on!

Characteristics That Are Significantly Present (continued)

Difficulty with social awareness (a bit better but a lot to work on) – I don’t know whether this has an official meaning, but I think of social awareness in a very broad sense as being aware that there are people around you and that they can be engaged with at some interpersonal level. For some time, we referred to other kids in the room as ‘part of the furniture’ as our son didn’t interact with them much differently than any other object in the room.

School has helped him in this regard in that he has regular time every school day with the same children and is involved in activities with them on an ongoing basis. You still get the sense that he’d usually be content without them, but often the emotions of an autistic toddler are inscrutable.

He does enjoy watching other kids do funny things, but watching rather than playing with children is one of those possible signs of autism, and this is a fairly accurate description of where he is right now.

That said, it is nice to see that he’s aware that other people have names, and he can use a name to refer to a person, though usually now that’s only with some prompting.

Continue on with Part 3! [click to continue…]

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What’s Your Autistic Toddler Like Now? (Part 1)

by Tim on February 20, 2009

Many times over, our “What’s Your Autistic Toddler Like?” post is the most read article on this site. It’s also the post people most often cite as the reason why they write us and become regular readers of our blog. We are gratified by your response to our story about our son and hope all this has been helpful to you and your family.

In celebration of the 1st Anniversary of our blog, I decided to write a multi-part series, revisit that popular post, and update it for what the J-Man is doing now almost 9 months later. The original “What’s Your Autistic Toddler Like?” gave you a snapshot of what an autistic toddler might be like – or at least what ours was like – about three months before his 3rd birthday.

[click to continue…]

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Stimming in a Winter Wonderland

by Tim on December 22, 2008

I can already tell this is going to be a challenging break from school. The J-Man spent much of his day finding various ways to stim. Clearly being away from the structure of school did not sit well with him, even though last week you could tell he was really ready for a break from the rigors of school. Left to what would seem to be a more relaxed schedule, he instead couldn’t figure out what to do with himself except run around, make seemingly random noises, and stim much of the day. It didn’t help that it was so dang cold today that we couldn’t go out.

The reality is, there’s no way we can recreate at home the rigorous structure of his classroom. Clearly I underestimated what we need to do over the break, though. All day you could tell he needed something, and relaxing to Signing Time or The Wonder Pets or me walking around with him singing songs wasn’t nearly enough to help him regroup. He didn’t melt down or anything, but he just looked lost, disoriented, or sometimes generally unable to intentionally decide what he wanted to do next. He just went into random mode sometimes.

His stimming was way more in effect today than usual. Most of his regular stimming involves flapping his hands and arms, running around while doing the ’stim dance’ (you’d have to see it to understand it), banging his fists together (like a very dramatic version of signing ‘more’, which is not what he’s actually doing there), banging blocks together, clapping his hands forcefully, or – and my least favorite – rapping his fist on the top of his head. It doesn’t seem like he’s hitting his head hard enough with his fist to cause much discomfort, though. He’s not pounding his head, just sort of ‘knocking’ on it like you might a door.

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When School Meets He-Who-Would-Not-Nap

by Tim on September 5, 2008

The past three days have been a whirlwind. Yes he’s gone at school most of the day and supposedly that’s some sort of ‘free time’ people imagine I have now, but we’ve used that time to try to dig out of the bottomless pit of chaos that our lives had become through neglect while we attended to J-Man’s IEP process and all the life-craziness of the past month. Plus I’m trying to build up my freelance career again. Ack!

As we’ve said before, J-Man does not nap. If he naps once a month, it’s a miracle. Mary and I love sleep more than just about anything, even coffee and chocolate. This made us question J-Man’s genetics at one point, but we resolved that question by looking at other attributes he shares with one (my big ears) or both (the tendency to snort when laughing too hard) of us.

So his first week of school is done – in his case, a three-day starter week – and it has completely wiped him out. It’s an Everest-like leap to go from two, three-hour preschool days with the under-threes at his former school – even as fun and energetic as they are – to five, 6 1/2-hour days at his new Pre-K autism classroom at the elementary school. He gets out at 3:30, and we get home about 3:40. He’s out like a light before 4:00. Today in the car, his eyes were open but he didn’t look at all awake to me.

Three days, three long death naps. That should tell you something about the challenge this is for him. But he’s handled it bravely and well. I can’t really even imagine what it’s like to be him and dumped into this incredibly structured classroom with a bunch of people he had seen once and go 6 1/2 hours in a brand new environment day after day with an all-new schedule and a lot more expectations of him. This must be what boot camp feels like, minus all the yelling, bald heads, and armaments.

As we know, autism is a journey of a million miles for our kids and for us, but you take it like you take any other journey – one step at a time, even if some of us who shall remain nameless and are three years old go rigid or noodly-legged sometimes when some teacher you just met tries to make you walk over to do something that you probably would enjoy doing anyway, just because you can or something.

In other news, I do have this enormous post I’ve been working on for a while. Hopefully I’ll finish it and post that over the weekend – tropical storm permitting – and get us into something other than preschool and IEPs for a while. If you live along the East Coast, stay safe!

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Giving Thanks for Therapists – A Season of Transitions

by Tim on June 22, 2008

Assuming you have good relationships with them – which to a person we’ve had with all of ours – your child’s therapists become your friends; they leave and you mourn. They bring you the one blessing you want as much as anything. They help your child take the one step at a time they need in order to grow into the fullest expression of themselves that they can.

J-Man’s developmental therapist is moving away this week. Her last day is tomorrow. She’s worked with him for about 15 months now – almost half his life, and far longer than anyone else. When she started, he would become immediately frustrated and upset when you tried to get him to do most anything. Stacking two blocks together or putting a big plastic coin in an even bigger slot looked like asking him to climb Everest. Even being near an open container of Play-Doh would make him gag. Touching fingerpaint would make his little sensory system go into red alert. He had at best a handful of random, unclear words. If an activity took more than two seconds, he couldn’t sit still for it or complete it. It’s hard to realize that when we started working together, he also couldn’t walk on his own. And it would be some time before he did. He had only very recently started sleeping through the night at that point. We were worried, exhausted, and growing more distraught by the day. It was a very hard time.

I see how he still struggles, and every day I grapple at least some with keeping perspective and staying positive. With her leaving, it’s made me look back and see just how far he has come. She was there when we had no idea what was going on, she’s seen us through his autism diagnosis, and she’s given us the tools and resources to know where to go next. She’s given us a wealth of information on how to set up his new home classroom and a home program to complement everything else he’s doing. Over the span of the last few months, she’s poured out so much of what she knows into us. We’ve learned more than I imagined possible, and we have a plan. I hope I’ve been a good student.

She has given us something words cannot describe, but those of you who have been through this know exactly what it is.

In a couple of months, we’ll also say goodbye to his other preschool teachers and therapists as we move into the county school system. Her departure starts this season of transition and mourning that we won’t get to see these people every week who have meant so much to us. I’ll feel this way a lot over the summer as we keep saying goodbye. They have all been so wonderful to us. It’s impossible to adequately express our gratitude to them. They’ve kept us upbeat when we were struggling. They love every kid who walks in their doors and steadfastly refuse to give up on anybody. If they ever wonder how much their work matters in the grand scheme of things, they need only to ask people like me.

I’ve realized that this isn’t a sprint or race; it’s a marathon relay. It’s the kindness and commitment of these once-strangers who have seen us through this far. It is because of them that we have hope in the people we have not yet met and things that we have not yet seen.

Whether they are developmental, occupational, speech, physical, or another other kind of therapist, the ones who enter our lives and offer their hands, heads, and hearts to people like us are often unsung superheroes.

They are worth their weight in gold, and probably get paid their weight in recyclable plastic.

They are reimbursed for gas at about the same rate as pizza delivery people – except they can’t take tips.

They are energetic Macgyvers, making limitless supplies of therapy aids out of egg cartons and dollar-store junk. They don’t even need duct tape, though give them a laminator and they can rule the world.

They will stand on their heads if need be. They will come up with stuff that boggles the mind.

They see our son achieve his latest miracle, and they cry, too.

They’ve never grown up, and we love them for it.

They can turn animal crackers into an epic story.

They know how to work an inscrutable health care and insurance system to get what your child needs.

They will hold your hand and believe, even on the days you can’t. They know when to talk and when to stay silent.

They believe every child has a bright future. They don’t give up. They love each and every child just because. No one needs to prove anything to them first, and no one needs to earn their love.

They work for sticky hugs and don’t complain about the rest.

They still deserve more money.

As families come and go and as they themselves move from place to place, they often don’t get to see who ‘their children’ become. In many cases, at age 3 many of those kids move on. I hope that at 13, 23, or anywhere in between or beyond that I’ll be able to send them a story or two about the kind of person J-Man grows up to be – better yet that he will be able to write to them – and to say thank you for everything. They are as much responsible for the progress he has made as they are for all the things he will yet discover how to do.

Thanks, Meg. We owe you. May the dollar stores always have what you need for your magic therapy kits, and may all your days be blessed.

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Structured Learning at Home and Reward Pellets

by Tim on June 1, 2008

As we develop this hybrid of therapy work for us to do at home in between J-Man’s work with his therapists and his time at school, we have been drawing a big blank on one critically important piece of the puzzle. I call it ‘reward pellets’.

The concept comes basically from how they train animals. They do something right, they get some sort of reward. Often, it’s a food pellet.

This may sound completely silly in a conversation about autistic kids, but it’s an important part of the structure and motivational processes needed to keep moving forward. The more you talk about this stuff, the more it sounds like training a schnauzer. But, it is what it is, and you get over it eventually.

If you have an autistic child, this probably isn’t news to you. In certain instances, if your child completes a new task, responds to your question, names an object for the first time, or something along those lines, you’ll give them a special treat or reward of some kind. We tend not to do this quite as often as some therapies lean toward, but we do have “you’ve worked hard, you’ve earned X” as part of the equation.

As part of the home classroom work we’re devising, we’re coming up with a system of ‘picture scheduling’, a way of using visual cues of some sort to illustrate how we’re going to sequence something, whether it be daily activities or the classroom tasks we’ll be doing for that ’session’.

For example, on his desk, we now have three (or four for lengthier sessions) colored shapes (red heart, green square, blue circle, plus yellow star for the fourth) in a row across the top of the desk. Next to him (on his left) is a bookshelf with three (or four) open-top plastic bins with those same shapes in the same order.

Our goal will be to get him to remove the first shape from his desk (red heart) and match it with (stick it on) the red heart on the bin (it’ll stick on with the velcro), do the activity in the bin, put it back in the bin, put the whole thing in the ‘done basket’ (a large clothes basket on the floor), then move on to the next shape and activity, and so on until we’re done.

[I'll get around to posting a picture of this soon.]

Here’s the missing link. At the end of the row of shapes is (or should be in our case) a picture of the ‘reward’ (also known as a ‘reinforcer’ or ‘reinforcing object’ I think). For some kids it might be a picture of an M&M or a favorite toy or something. The idea is that it should be something special and not otherwise part of the classroom routine.

Our main problem? J-Man isn’t really attached to any toy, food, or anything else for that matter. He’s really attached to us, but it’s not like we’re going to reserve hugs for rewards or something.

Our partial solution is to use pictures of his favorite TV shows. When he completes all the tasks, he gets five minutes of a show. This means we have to cue up the DVR to the right place beforehand so that it will just show five minutes and not abruptly end mid-show. Easy enough, though. The hope is that this whole cycle will take about 15 minutes – 10 for the activities and 5 for the ‘reward’ – with the goal of completing four cycles in a row (or an hour total, however that works out). I’m not real jazzed about using TV for this purpose, but we’ve been low on options.

If the end of those activities mean the end of the classroom time for a while (i.e., we’re off for a couple of hours), the picture could be of his swing set, which is NOT something we could do for five minutes without inciting a riot. Plus it’s getting so hot that our ability to use it will get limited soon.

That brings us to our latest discovery, which may very well be the reward we were looking for.

Going on the “keyboards are the best things since cheese toast” revelation, we discovered the LeapFrog ClickStart My First Computer. It’s a regular QWERTY keyboard like ours (he would have noticed if it wasn’t) and the games included on the console can be simplified enough that all he really has to do is sit there and type. Letters appear, it names letters out loud, and generally fun things happen. We think it’s cute.

He thinks it’s so great he’s almost beside himself.

Yay!

To make sure he doesn’t just use it to zone out, we sit there and ask him to type a particular letter (he may or may not), encourage him to try various parts of the keyboard (he’s pretty fixated on ‘K’ because he recognizes it and he can say it), and generally be there to be interactive. He also was getting very excited, which results in lots of hand flapping and general overload, so we’re there to do the normal stuff we do to help him stay centered (deep pressure, massage, singing, etc.)

The obvious question is, if it makes him do that and you have to center him, why do it? Mostly because his best learning takes place in a certain zone (we call it the ’sweet spot’) where he’s not too over or under-stimulated. Under-stimulation is just as stifling to his ability to do anything as the overload is. He can zone out or get overloaded in just about any activity. The ones he’s really excited about do make it hard for him to settle down, but that’s part of the process of things he needs to learn. By being there and being interactive (and not letting him drop out or go into his own world with it), we turn it into a quality activity.

Anyway, looks like Leap Frog has provided our ‘reward pellet’ for now.

Question for the masses, particularly those whose kids are attached to very few things – how do you handle the reward thing?

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