October 31, 2012

What Moe Can Do: Imitate

Moe is a smart kid. He's a problem solver: if he sees something he wants, he will figure out how to get it. He does best at concrete tasks where expectations are clear. He can learn. We know this. But for the longest time, Moe was unable to do something most parents take for granted: imitate.

Imitation is one of the fundamental building blocks for learning. Typical children imitate their parents when they play. They imitate other kids to learn social interaction. They imitate speech sounds to learn to speak, and often will closely watch the way a speaker's mouth moves so they can move the same way.

For this reason, many ABA programs including our own spend a lot of time on developing imitation skills. And not long ago something "clicked" for Moe. He is now able to imitiate physical actions. In fact, his go to response right now if he's unsure of what you are asking him to do, is to imitate you.

We are excited about this development! It shows that skills, like imitation, that come to many children naturally can be taught. I have no doubt that Moe had to reach some level of brain development to get here as well, but this skill certainly has come only since we started working the one on one home program with him this summer. He imitates play with toys like dolls, farm animals and cars, as well as gross and fine motor movements.

Surprisingly, Moe's fine motor imitation is much more accurate than his gross motor. A request to put his arms up may not make it all the way over his head, for example. This is likely do to motor planning and proprioceptive difficulties (understanding where his body is in space). Moe is able to distinguish one arm versus two arm actions and sometimes will even discriminate left and right (though we aren't asking him to do this specifically).

This is still done in a highly directed environment. I do not think Moe always understands why or what he is imitating, but he knows he should do it and is motivated to do so. If imitation truly is the foundation for other learning, it gives me hope that he will learn more advanced and abstract skills as well, though certainly in his own time. In particular, basic imitation is a foundation for learning to speak, and indeed Moe is trying to imitate some speech, though his apraxia (difficulties with motor planning) does get in the way.

This is one of the reasons our ABA provider is so insistent on making sure Moe makes eye contact before we fulfill a request. It isn't that we want Moe to be able to look us in the eye for social purposes, but rather that we hope conditioning facial awareness will help him imitate the motor movements for speech.

I know a lot of this conditioning type of ABA can be controversial among autistics themselves. Even words like "conditioning" can make people bristle. Moe seems to do well with this repetitive type of learning, but it certainly may not be for everyone. Let me also be clear that this is not about trying to get Moe to act "normal" or otherwise hide his autism. It is about helping him gain the skills he needs to be able to learn.

I would be interested in hearing from autistic people themselves if they have thoughts on teaching imitation to teach learning other skills. Is imitation something you work on? Or do you learn in a completely different way?

This is the second in the series about the new skills Moe has gained. Click for the first piece, Play iPad.

October 29, 2012

Two Baths and a Shower

I kind of hate weekends.

By Friday, it is clear that Moe needs a break and I do look forward to having Jeff around, but the lack of structure on the weekends does not work well for Moe. He gets bored, but also has trouble occupying his time. He doesn't want to be engaged in an activity, and even when I can get him to sit down and do some puzzles or Mr. Potato Head, it's for all of about 2 minutes. The iPad can keep him occupied for maybe 15 minutes before he starts to overload.

Frankly we are at a loss as to what to do with him. Outings are exhausting, though we try as much as possible. Yesterday we went to a pumpkin patch. Jeff spent 45 minutes chasing Moe around, resting only when Moe stopped to play in the straw. At one point I found some pumpkins that were very bumpy and Moe sat and played with that for approximately 37 seconds. I tried to pose the kids for a picture during that time, at which point Moe grabbed and scratched Jelly's arm, and that was the end of that.

So we took a drive up to another town about 15 minutes away and stopped at my favorite of the 30 or so bubble tea places within a one mile radius. We all got watermelon juice and listed to Jelly complain about why Moe got to ride in the stroller and how she was "having a hard time" walking. Also, Moe pulled gum off the bottom of the table and stuck it in his mouth. I was shockingly unfazed by this.

We got home and started a bath for Moe. Jeff finished up, got him in his pull-up and let him have some down time. And by "down time" I mean time to go in his room, take off his pull-up, climb into bed and spread poop all over. Jeff put Moe in the shower where he acted like he was being water-boarded and I took care of the sheets and other cleanup in his room.

Moe, once again clean, was this time put into a pull-up and his zip up the back pajamas. Jeff and I were finishing up cleaning when we went to check on Moe, who was now in the kitchen (the gate to which is merely a suggestion at this point). He was reaching up to the counter with his hand in a tub of margarine, out of which he had clearly just eaten a large scoop. He looked like he was both about to puke and take another bite.

We turned on the TV, hoping that might keep him still for a few minutes while I made dinner. Moe sat down nicely to dinner, but I couldn't stop smelling poop. The boy still stunk. So after dinner, it was back to the bath, this time with a pretty serious scrub down. Meanwhile, I returned to his room for another round of cleaning, sprayed everything with Lysol and opened the window. Once again clean and jammied up, the boy returned to his room, where I caught him seconds later by the open window, covered in something. My heart sank as I thought it was more poop, but became overjoyed when I realized he was only playing with dust that had accumulated on the window jamb. He was kind of covered in this stuff, but at that point I decided it wasn't anything a baby wipe couldn't handle.

Besides, by that time I'm pretty sure we were out of hot water.

October 24, 2012


I have had the gamut of emotions when it comes to being the parent of a special needs child. Fear? Check. Grief? Yup. Hope? Yes. Joy? Sometimes. Love? Always.

But there is one feeling that I didn't expect, and I seem to feel it a lot: Outrage.

I am outraged at the abuse disabled people suffer at the hands of people who are supposed to be caring for them.

I am outraged at the lack of services and support our kids get in school.

I am outraged at the callous use of the word "retard" by people who should know better.

I am outraged when adults with autism tell me I don't care for my child the right way.

I am outraged when parents of autistic children don't listen to adults with autism.

I am outraged when a parent doesn't vaccinate their child, or spreads lies about vaccine safety.

I am outraged when two loving people cannot get married because they are of the same gender.

The list goes on. And I have to stop and wonder - is all this outrage good for me? Is it good for anyone? Fueled by caffeine and righteousness, the internet is full of so much outrage. It's exhausting.

The statements above are all things I believe. I believe them strongly. They are valid and important concerns. But outrage on the internet is just the daily state of being and has lost its power. We can't possibly yell loud enough to be heard anymore, and I can feel my blood pressure rising over - over what? A political pundit out for ratings? The insults of a troll who is only looking for attention? The real issues, the human beings, get lost in all the noise.

There has to be a better way.

October 22, 2012

Hey Ann, Is That The Best You Got?

I'm not one to get political on my blog, but I don't think this is really a political issue. And I hate to mention Ann Coulter.

I know she is using the word "retard" to get attention. But enough is enough.

Ann, using that word doesn't make you funny. It doesn't make you look smart. It doesn't make a point about anyone or anything (other than maybe your own lack of class). It certainly doesn't make a point about Obama (the supposed "retard" in this scenario). A comment like this doesn't count as political commentary. If school yard name calling is the best you can do for an argument against the president, then I'm feeling pretty confident about this election.

It does make you look ignorant and mean.

That "retard" you mention is a human being. He's a person deserving of the respect and kindness due to all people. Yes, Ann, even to people like you who feel the need to insult others just to make themselves feel better.

Because, Ann, when you call someone a retard, you aren't insulting the president. You are insulting this boy.

October 15, 2012

Trial and Error

We are now about three and a half years since Moe's autism diagnosis. One thing I've learned, and that I'd share with any parents of a newly diagnosed child, is that there is a lot of trial and error. Although there are professionals who can guide you, there is no way to know exactly what therapies or interventions (or lack thereof) are going to help your child progress. It is one of the aspects of parenting Moe that I find most frustrating. I just want someone to tell me "do this!" and Moe will reach his potential.

We initially had Moe in a center-based program, then realized he needed something different and moved to an in-home program. I regretted those few months we "wasted" at the school. When Moe turned three, we moved him to the preschool special day class. After two years, we decided not to send him back. I regretted not doing it sooner.

But there really isn't anyway to know before you try. Some things work for some kids and not others. Some therapies, like ABA, vary widely in approach, with some kids responding best to concrete discreet trial applications and others doing better with more naturalistic styles. It may take a while to find a therapist or provider who fits your family's style and needs.

Sometimes programs, or therapies or medications may work for a while then need to be adjusted. All people grow and change and our kids are no different. What worked at one time may no longer be appropriate. It takes time to get to know your child, and he will continue to change. I have to remind myself that trial and error time is not time wasted; it is the necessary process to figuring out what works.

We've tried a lot of therapies with Moe. Especially when he was younger, he really loved singing, so we tried music therapy. It was okay, but for us, it wasn't The Thing. We will keep trying. There are more things: aquatic therapy, equine therapy, recreation therapy, listening therapy. We will try some of them (especially ones that sound fun for Moe) and pass on others. I may regret time wasted and money spent on some, and wonder about others we decide not to do. But each thing we try is a lesson learned.

Moe did so well in an intensive, one on one, in-home program this summer. This ABA team uses very discreet learning, with the use of traditional reinforcers like food or iPad time. Moe seems to work well with this  concrete style of teaching and I thought, "why didn't we do this sooner?" I had to remind myself that when Moe was two he had an in-home program and he needed more naturalistic reinforcers at that time. Moe changed, and we adapted his program. It will likely happy again and again.

At the beginning of this school year, we put Moe in a school that uses more of a group-based approach and it didn't work. We understand this now, and as we look for a new school placement I have a better idea of where he is likely to succeed. Do I regret the month he spent at the school? A little. But we had to go through the experience to figure it out.

Fortunately, we are getting to know Moe's style of learning better and getting faster at recognizing when he isn't succeeding. And he is getting better at telling us when he's unhappy - even if it is through behavior rather than words.

As we prepare to start working with an AAC specialist, I am hopeful that we will find the right communication system or device that will help him communicate. Part of me is already kicking myself for not starting sooner, but we had to wait until he was ready. Moe seems to be ready now, and I am looking forward to seeing what he can do. I have high hopes that we will find the right thing quickly, but I am sure there will plenty of trial and error here as well.

October 9, 2012

What Moe Can Do: Play iPad

I write a lot on about limitations within our family, things that Moe can't do or reasons it is hard for us to do the types of things your average family with a five year old and a three year old do. We have a lot of those limitations, and they are the kinds of things I usually need to work out for myself by writing about them.

But Jeff and I have been marveling lately at the number of things that Moe can do and ways that he's progressed over the past several months. So I want to spend some time telling you the ways in which Moe is developing and changing. I think it will be good for me too.

So today, I launch the first in a series of posts called: What Moe Can Do!

Moe can play iPad games

Every mother's dream, right? For me, in many ways, yes. For a long time, Moe would take the iPad and just push the button over and over. He would tap an icon to start an app, and basically just randomly touch things or watch the opening sequence then press the button again. And he would drag his whole hand on the screen so that he'd often inadvertently leave an app. He would be easily frustrated or over stimulated.

Moe does well when the iPad is at an angle.
The OtterBox case is great for this and for protection.
Eventually, though, Moe started to be able to navigate the iPad. (Something he could do with ease at 18 months, but lost this ability when he regressed). He learned to slide his finger to turn it on and slide the home screens to find his apps. He learned where his favorite apps were, even those hidden in folders, and can launch them. He learned to use one finger (although he will sometimes use his thumb instead of his pointer), and play games. He was most successful with simple games, like My First Tangram and the robot building part of Toca Robot Lab (see link below). But he is learning to play the more complex parts of the apps now too. For example, after building a robot you need to navigate it through a simple maze. He used to just press the button and start over at that point, but now he is able to complete the game to be able to build another robot.

So why am I so excited about this? In part, it is because it is a concrete way to see progress. I can see more sophisticated thinking going on as he becomes better able to work within the apps. It gives me hope that he may be able to navigate a complex communication system in the future.

But most significant right now is that Moe finally has an activity he can do on his own. He is not good at occupying his time. He will spend his free time bored or frustrated and gets into trouble. He wanders the house, climbs things, bounces off the walls, spins in his swing or empties Jelly's drawers (her hair accessories are way more interesting than anything in his room). The iPad provides activities that Moe can do independently. They require focus, problem solving skills and creativity. I try to balance iPad time with generous amounts of physical activity, but just having Moe sit still for a little while is a huge improvement for both of us.

In case you are looking for some apps for your little one, here are some of Moe's favorites right now. Jelly likes these too, though some are not quite challenging enough for her anymore.

-All Toca Boca apps, especially Toca Band (both kids' favorite right now), Toca Doctor, Toca Kitchen and Toca Robot Lab
-Starfall ABCs
-Sound Touch
-Several of the Duck Duck Moose apps, especially Itsy Bitsy Spider

Over the next few days, I will update my Resources page to include a list of apps we like, but if you are looking for an excellent curated list, visit the spreadsheet over at Squidalicious.

October 2, 2012

To Friends

In the three years I've been writing this blog, I've connected online with many parents of autistic or other special needs children and adults. Through Facebook, I'm able to have conversations with some of the smartest, funniest, kindest people all over the world, from Australia to New York, North Carolina to Berkeley. These are people who get it, who know what to say to each other when we're hurting, who prop each other up when we're down, and make each other laugh when it seems the world will come crashing down.

Sometimes one of these people will lament the loss of a friend or family member. Someone who didn't want to be around "all this autism." Or someone who got a little too judgmental about the parenting of a special needs child, even though she doesn't have one of her own. Who had an negative opinion about  their decision to medicate, or how they discipline, or what the kids will eat, or any other of the things we delicately balance every day. Sometimes these friendships end abruptly, and other times simply disintegrate from disuse, lifestyles no longer compatible. It happens.

But I am lucky. I have not lost one single friend or family member since Moe's diagnosis. In fact, I have some really great friends who have shown how great they really are. They make an effort to connect. They understand that I have to say no more often than not and continue to invite me anyway. They ask me about Moe and his school and they care about my answers. And when I don't want to talk about autism anymore, we talk about other things.

The other day, one of these friends said, "we miss Moe." I don't know if she realized it, but that was, to me, a remarkable thing to say. Because while Moe is still running around like our kids did when they were toddlers, their kids are in kindergarten, and riding bikes and scooters, and playing and making mischief of one kind and another. I am not as close to many of these friends as I was when I saw them every week, and I am sometimes a little bit jealous of how much they see each other and involved they are in each others' lives, but they always welcome me in, on whatever terms I need.

I'd like to say that this is because I am the most interesting woman in the world, and that they are just happy to have whatever time with me they can. But really it is a testimony to them. To their openness and intelligence and all around loveliness. And I got to spend last weekend with several of them in one of the most beautiful places in the world.

They are also funny as hell. And they catch me when I run to them.


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