Problem Solver

When he was a baby, we often remarked at how intently Moe would try to figure out how toys worked. We now know that that was likely an early sign of autism, but it doesn’t take away from the fact that he is a good observer, at least of things, if not people. He figured out, for example, how to turn his toys on and off much younger than Jelly did.

In general, Moe is a fantastic problem solver, quite capable when it comes to things he wants to do. The other day, his favorite toy monkey was in his crib. He figured out how to put one hand through the slats to reach the monkey, raise it up and grab it over the top with his other hand. It seems like a complicated little maneuver that he just figured out how to do.

Moe has also figured out that he can move his chair under the light switch in his room so he can climb up and turn the light off or on. He had been doing this for a while when he realized that this is a skill he could use elsewhere. A couple of weeks ago, he moved his chair into Jelly’s room across the hall so he could reach her light, and it wasn’t long before he started moving all kinds of things around: the ottoman in the living room so he could reach those lights, or a drum under the light switch in the hall. Clearly, Moe likes to control the lights.

A couple of weeks ago we were at OT and, as always, asked Moe to take off his shoes. Moe can do this, as I’ve often found Moe without his shoes when I know I didn’t take them off. But I have never been able to get Moe to take off his shoes on demand. He knows what we’re asking. He’ll sit down, fiddle with the velcro, but eventually give up. Usually, I step in to help but this time we waited. After a lot of prompting and a little help, Moe did it. But we could see that it was hard for him; he doesn’t quite have the fine motor control, so he uses his other foot to help kick the shoe off. But still, he figured out a way.

We discussed why Moe wasn’t able to just sit down and take off his shoes. In this case, it may have been that Moe knew we’d eventually help so he’d just make it easier on himself and wait it out. But there seems to be a qualitative difference between the ability to do something because you are self-motivated and because you have to. Of course, motivation is a powerful thing, but I don’t think Moe could have taken his shoes off even for all the jelly beans in the world. It seems like the brain treats performing a task at will and performing it on command very differently.

Too Much Information

And I'm not talking about the good kind of TMI where you get to hear some juicy secret of mine. You see, I've been home a lot lately. I mean a lot. We've all been sick and that means I've had a lot of time to surf the internet. I've also been writing a little for Technorati, so I've been researching autism and paying attention to autism news a lot more, and there's just so much of it.

Just this week, I've learned that autism may be caused by: mitochondrial dysfunction, living too close to freeways, and living near a cement plant. In the past, I've also read that autism is caused by: heredity, other genetic mutations, vaccines, bad parenting, heavy metals in the bloodstream, premature birth, and allergies. The list goes on. (Read this great summary of the flaws in some of the recent research.)

Within autism, there are so many diagnoses and co-morbid conditions: high functioning to severe, Asperger's, apraxia, sensory processing disorder, hypotonia, hyperlexia, and echolalia to name a few.

And then there are the plethora of therapies out there, including but not limited to: ABA, Floortime, SonRise, Pivotal Response Training, Relationship Development Intervention, occupational therapy, speech and language therapy, sensory integration therapy, music therapy, recreation therapy, riding horses, surfing, gluten free casein free diets, chelation, B12 shots, other vitamin and mineral supplements, essential fatty acids, fish oil supplements, gut treatments including probiotics and antifungals, and hyperbaric oxygen therapy.

It is enough to make a person crazy.

Our approach has always been:

• Let the science guide us.
• Go to trusted professionals for guidance.
• Do no harm.
• Do what works for our family.

And because of that, we've gone what might be considered a fairly conservative route for Moe's autism therapies. We started with individual ABA, speech therapy and occupational therapy, and gradually added a group component. Now Moe is in our school's program (which is excellent), a small class based on the Competent Learner Model, but taking cues from traditional ABA and developmentally-based techniques. He gets group OT and both group and individual speech at school.

We recently added some music therapy, which is also a lot like ABA but using music (instruments, musically based games, singing, etc.). This is not "traditional" but because Moe is so musically inclined, we thought at the very least it could be fun for him. Our music therapist also teaches older spectrum kids to play instruments so my hope is we are building a basis for that in the future as well.

We've recently decided to add in some more OT. It's not going to be strictly sensory integration therapy but we will focus a lot on Moe's sensory-seeking needs. He has a lot of them (chewing, spinning, swinging, etc.). We've had to delay starting because of all our illnesses but I hope we can give Moe some of that extra input he needs to help keep himself more regulated and focused throughout the day.

I am not advocating this approach for everyone, but it is what we can handle. I do think it makes a lot of sense to start small and add in as you go, both in terms of keeping some sanity and for tracking progress. But every day I question whether we're doing the right things, too much or too little. Jeff seems more confident in our approach, and that's good, because I'm sure I'd be all over the map if these decisions were mine alone.

Autism may be a puzzle, but its really the maze of options for parents that is so confounding.

Up and Down, Salty and Sweet

There are times for thinking, contemplating, and planning. There are times for reflection and healing. And then there are times for action, when we have to pull up our big girl panties and get to work. This has been one of those times.

Moe has been having some trouble with regulation. This means that he'll go from being really mellow one minute to running, climbing, and screeching the next. This may sound like your average 3 year old, but it is more extreme than that, and, when he gets really keyed up, he can't easily calm down and needs external help. The great thing is that Moe is often able to recognize when he needs to calm down and will independently go to his room, close his door and climb into his crib, his comfort place. Or he might rock on his tummy on the rocking chair or exercise ball. But during the times when he's really up, he can be quite a handful, climbing walls, splashing in whatever water he can find (including the dog dish and the water that comes out of the refrigerator). It may look like he's having fun, but being so over-stimulated can be quite uncomfortable for Moe, and hard for me to deal with.

We've been working with an occupational therapist who is helping us create a good sesory diet for Moe, especially on the weekends when he lacks the structure of the school day. A sensory diet just means that Moe gets a good range of sensory input throughout the day, to make sure all his system's needs are met. It also means we have to find the right type of activities for different parts of the day. The first step is to figure out the right "up-regulating" and "down-regulating" activies for Moe. For example, a warm bath is usually a nice, calming activity for kids. Not here. Water is very stimulating for Moe. He seeks out this type of input, but we don't want such an exciting activity before bed. So I've started giving Moe his bath when he gets home from school. This is the crux of our new plan: make sure we do stimulating activities in early the afternoon, and calming activities after dinner. Sounds obvious, no? But it is actually quite challenging to make sure Moe is getting what he needs, especially since we aren't always sure what that is. And there is a 17 month old hanging around with her own agenda.

Some of the aspects of Moe's sensory diet include:

• water and other sensory play, like shaving cream or sand
• variety of snack textures, including chewy and crunchy, and strong flavors like salt or lemon
• heavy work, including jumping, pushing heavy things, climbing
• swinging, rocking, bouncing
• brushing techniques, deep pressure, joint compresions, "active" sitting (sitting on an uneven surface, like a ball or wedge)

We know that some of Moe's sleep issues stem from this same inability to easily self-soothe. He wakes up in the middle of the night, is tired and wants to sleep, but is unable to calm himself enough to do so. This can be really frustrating for Moe, and lead to some pretty rough nights. I hope that being more regulated during the day will help at night. Our other goal is to help Moe learn some self-soothing techniques so that when he does wake up during the night he can get himself settled down and return to sleep. This may mean opening up the crib tent so he has access to things in his room, but we're not there yet.


Another way to think about this is that Moe may have trouble calming his mind at night. He has a lot of input to during the day that he needs to process. Older children with autism have said that they feel like their minds are very busy, and they can't shut them off. I know I've felt that way if I've had caffeine too late in the day or am worried about something. One suggestion I really like is to try using music as a calmer. We've started doing music time before bed, and are looking for a kid's mp3 player that Moe can control himself. The idea is to load some calming music on the player and if Moe needs to settle down in the night, he can turn it on. We're also experimenting with some guided meditation for children. These are calming audio stories that help kids relax. These can be really useful for older kids who have trouble shutting down at night. I don't expect Moe to understand the stories now, but I do think the relaxing cadence could be calming for him.

As you can tell, it is a time of putting in the work and trying lots of things. I wish someone could just give me a plan and say "do this." But it doesn't work that way, so we're experimenting. Some days will be better than others, but hopefully we'll hit on the right combination of up and down, high and low, salty and sweet.