In typical me fashion, I was sitting up late last night thinking about autism, pondering over the supports we use for people on the spectrum - sticker charts, visual schedules, etc. And then it occurred to me. These are as much tools to train caregivers to interact and understand someone on the spectrum as they are tools for the intended person.
​
I thought about each support one by one, and here I'm going to take you through how they can actually help caregivers as much as caregivees...

1. Sticker charts
These have been much decried in recent years as tools for people on the spectrum, due to concerns about extrinsic vs intrinsic motivation, among others. But one thing these do that we don't think about is they remind caregivers to look for positive things to reward.

Having that sticker chart is a reminder to look for the great things a child on the spectrum does, when the most salient things for caregivers of children (either on the spectrum or off) tend to be the bad. So I love the idea of using a sticker chart for the caregiver, to remind US to give praise throughout the day.

2. Visual schedules
Predictability is SO important for reducing anxiety in a person on the spectrum. And yet, our world doesn't tend to provide that. A visual schedule is a great way of not only giving a person on the spectrum a way to see what's happening next, but it's also a great way for us as caregivers to be held to that schedule.

When you don't have a schedule written down and given to the person on the spectrum, you are liable to deviate quite a bit without warning. If you have a visual schedule, it's a reminder that you need to change that schedule (and thereby give a warning to the person on the spectrum of the change) before you change your plans.

3. Timers
Similar to a visual schedule, a timer holds both the person on the spectrum AND the caregiver to a commitment in terms of the routine and transitions.

4. The 5-point scale
The five point scale is a way of communicating a state of emotional regulation. A 1, for instance, is fully regulated, whereas a 5 is extremely unregulated.

Right after I learned about this scale, Caley called me in the middle of a panic attack. Wanting to apply what I'd learned, I explained the five point scale and asked where she fell. She said she fell at a four, and defined a four as feeling "like I want to run in the closet and hide".

Yes, the scale was intended to support Caley, but it was a tool for me as her ally to remind me to ask her how she's feeling, and then better understand how that felt to her. I had no idea before that a "4" felt THAT bad to her. This tool, too, went two ways.
​
5. Functional behavior analysis
This is a tool held up as the foundation of changing a child's behavior. Essentially you figure out what happened first, what happened next, and what function that behavior served.

Yet, it can be used as an far better tool for ourselves. It's a constant reminder that behavior is communication. If a child screams and then the adult interacting with them goes away and they stop screaming, they might be saying "I'm overwhelmed." Biting might be a way of saying "pay attention to me". These analyses teach us to look for the underlying meaning in behaviors, rather than just brushing them off.

These are just some examples of the ways that these supports run both ways, but there are many more. What tools can you think of that run both ways?

-Creigh

One of the things that I have always appreciated about the Kindle Fire (which I am not affiliated with, but do, in fact, own) is that it's a very low cost access point for a communication device. It's only $50.
​
Quick Talk AAC, Speech Assistant AAC, LetMeTalk, TalkinPictures, TalkTablet, Gabby Tabs - you may not have heard of them, but these are all communication apps available for Kindle devices, most of which are FREE.
​
That means that, for the low price of $50, you can try out several AAC (Augmentative and Alternative Communication) apps for your child or yourself. What's more, there's now a way to unlock the Google Play store without rooting your Kindle, so that ANY AAC app available for Android will be able to work on your Kindle.

I don't know about you, but I think that's amazing. If you already have a communication device for your child, but want a more mobile one, or one you don't have to worry so much about breaking during high use situations (it's $50, so less stress), this is a GREAT addition.

What's more, devices can actually be really great for working on turn taking, visual schedules, and even spoken communication. I know when I nannied a child on the spectrum, one of the BEST communication activities I could do was watch Angry Birds videos with him on his iPad. I would ask him wh- questions about what was going on, he would also ask me questions about the characters, I would work with him on making inferences about what was going to happen next...the list goes on.

What matters is not so much the device itself, but what you do with it. And with a Kindle Fire you can do a LOT.
​
You can purchase one here:
http://www.amazon.com/…/B…/ref=s9_acsd_bw_dcd_odsbncat_c0_t…

And check out the AAC apps that come with the Kindle Fire store here: http://www.amazon.com/s/ref=nb_sb_noss…

And, if you'd prefer to use the AAC apps in the Google Play store (which are more varied than those in the Amazon store - top ones include Alexicom, Avaz, JABtalk, Sono Flex, Nova Chat, and more!), you can add the Google Play store to your device without rooting it by following the directions here:
http://www.geek.com/…/you-can-access-google-play-on-amazon…/

Have concerns about using a communication device with your child? Check out this article about them 
http://www.speakforyourself.org/…/myth-augmentative-altern…/

-Creigh

As those of you who are caregivers for those who have sensory sensitivities (as most anyone on the spectrum does) or who have these sensitivities yourself know, toothbrushing can be a sensory NIGHTMARE! I'll let Caley explain how it feels:

"PAIN!"

That's all she said when I asked her to describe it and I think that's plenty. And flossing, she says, is even worse!

When she was younger, our parents were in charge and made sure her oral hygiene was kept up by making her brush her teeth.

However, now that she's an adult who can make her own decisions, Caley has declared that the pain of toothbrushing is not worth the benefits (which should tell you just how painful it is) and that we should try to find something to do instead.

Here's everything we've tried so far, including what's worked and what hasn't, so that those of you with similar difficulties can learn from our experimentation.

Attempt #1: No Burn Mouthwash
Caley vetoed regular mouthwash right away, for sensory reasons, but agreed to try "no burn" mouthwash instead. Apparently that's false advertising on their part because she took one mouthful and immediately had to spit out and rinse.

As Caley says "It BURNED!!!!! It was lies!"

As that didn't work, we tried a mouthwash that didn't have any alcohol in it whatsoever: Biotene mouthwash. Caley approved of the lack of the burn, so this product gets the thumbs up from her!
That said, mouthwash alone is no substitute for an actual toothbrush. So we kept looking...

Attempt #2: Water pic
We thought this might be able to help with actual plaque removal, unlike the mouthwash. At the same time, unlike toothbrushing the water didn't have painful bristles, which was a point in its favor.

Unfortunately, despite looking like a good product for sensory avoiders this didn't work out. Not only was the water pressure not enough to really get rid of all the plaque, but the machine itself was LOUD, which set off sensory sensitivities in a different way!

Points for effort, but this one ended up being a waste of money for her needs.

Attempt #3: Stimudent
These are little wooden picks that you use to get plaque off your teeth. These, unfortunately, didn't work out either, also for sensory reasons, as well as practical reasons.

Sensory wise, they made Caley's gums bleed. The taste of blood really bothers her, so that was already enough to make her not want to use them. On top of that, it takes a forever, in Caley's words, to fully clean your teeth with these. Practically, therefore, these didn't pan out either.

Attempt #4: Trident gum
This one met with approval! Trident gum helps (slightly) to mechanically dislodge food in the mouth, and an ingredient in it, xylitol, helps make the mouth a less pleasant environment for harmful bacteria. That's actually the same ingredient as they use in baby toothpaste!

​Again, like mouthwash, definitely not a replacement, but certainly helpful as part of a bigger oral hygiene plan.

Attempt #5: Oral swabs
These are basically little sponges attached to popsicle sticks. You can get them plain or, as we did, treated. Ours has dentrifice on it, which acts to scrub plaque away by abrasion, as toothpaste does.

They're easy to use, you just brush them around your mouth like a toothbrush. They're meant for people with disorders or health problems that make toothbrushing impossible - which certainly applied!

Caley tried them and deemed them a success! Not only did the sponge not cause pain, but it was also pretty much flavorless (despite saying they were mint flavored) - another point in favor for a sensory avoider!

We had a winner!

Conclusion:
Now, am I saying these solutions are as good as flossing and brushing? No, not by any means. However, they mean Caley doesn't have to be in pain anymore, and using all three of them together (Biotene mouthwash, trident gum, and the oral swabs) makes a halfway decent oral care program.

It was definitely worth it to respect Caley's needs and find something new instead of trying to force her to do something that wasn't working for her. Caley and I are sharing this story to help those of you with similar needs find something that works for you, too!

Let us know in the comments about any other sensory friendly oral hygiene products you know of, or if you've run into similar toothbrushing issues yourself!
​
-Creigh

So a while back I was working with a child on the spectrum who liked to bang his head, which is pretty common. It's generally a sensory seeking behavior...but it's pretty bad for your head!

I happened to have one of these mesh back supports in my car and on an instinct attached it to the head of the chair the child was banging his head on. He LOVED it! He was able to still move his head back and forth and meet resistance when he went back, without actually banging his head on something.

Since it's mesh and elastic, the material gives quite a bit, which protected his head as he banged it and made sure he never actually made contact with the chair itself. The nice thing is, they're also super inexpensive - you can get them off of Amazon for less than $5.http://www.amazon.com/Fellowes-Office-Suites-S…/…/B000MUSOZ6 (I'm not affiliated, just providing a link.)

Let me know what you guys think! As always, I'm not a professional, just writing from personal experience - it went well for this boy and I thought I'd share the idea with the rest of you! 

-Creigh

In my AAC (Augmentative and Alternative Communication) class today my professor mentioned a great idea - communication placemats for meal time! She said she'd used one at a pre-school she'd been at before, where communication placemats were made. She said they distributed them to all the children, speaking and non-speaking alike, both for normalization and so the speaking children could model how to use them for the non-speaking children.

I made mine with a camp I helped out for elementary school students in mind - I put meal related things on top, social-related on the right, and adult related on the left. But this would be great to adapt to your own personal needs, too! You can use picture symbols instead of words for non-readers and use vocabulary more common at home. If I had to go back, I'd add in "like", "dislike", "I", and "want" that way you can prompt for sentence production (ie the child can point to "I want food").
​
Let me know what you would do to yours! You can buy them online but I literally drew this one in five minutes in class and all you'd need to do is laminate it.
​
-Creigh

When we were in middle school, Caley and I were both required to draw maps. I mean, free hand draw a map of an entire continent, or a topographic map of Southeast Asia.

Caley and I got to talking about those maps this morning, and she revealed to me that at points she'd been thinking about breaking her arm so she wouldn't have to draw them. She was a MIDDLE SCHOOLER thinking about BREAKING HER OWN ARM.

And my family and I had no idea.
​
Sure, we knew that as someone with dysgraphia (common in people on the spectrum) writing hurt her - but we never realized it hurt her THAT much. And, yes, I personally knew how anxiety inducing those maps could be for those of a perfectionistic bend - I remember how painstakingly I drew the fjords of Norway and despaired over getting Crimea just right.

But I didn't know. I didn't realize just how bad it was for her.
​
I'll let Caley tell you the story in her own words:

"They were free hand-drawn maps. We'd do things like the 13 colonies, Europe and Australia. Europe was the worst. You had to draw the coastline and then map within five miles the different cities. And you had to color it in and make it pretty and it did matter how it looked. That's one of the few C's I got in middle school.
​
It hurt a lot because of my dysgraphia and then it extremely stressed me. I remember hurting myself throwing my pencil up in the air in frustration. The first map I didn't think of it. The second and third maps I definitely thought about breaking my own arm. Because it HURT to write that map. And it was SO stressful. I don't think my meds were really good back then so, along with going through puberty, everything just combined together.
​
I don't know how to describe it, it just hurts to write. I can do a little bit, but because of the way I have to bend my fingers so that I can have any kind of fine motor control over the pencil it becomes REALLY painful.

I don't think I ever told [other people] it hurt. Although it should have been fairly obvious by how I acted. I often shook my hand out, although that looked like stimming, and I hated writing. Typing was a lot better.
​
I think they did the maps to attract those into art into learning, but it kind of was punishing to everyone who didn't."

I don't know if there's one single lesson to this story.

Maybe how painful dysgraphia can be?

Or how bad anxiety can get?

The importance of teaching self-advocacy?

Or the way that these moments of anxiety can just go under the radar, because we don't realize JUST HOW BAD it is for the person?

​The need for accommodations?

​The way an assignment can be so frustrating that a child is thinking about hurting themselves to get out of it?

In the end, I think this story tells all of those and more.

​-Creigh

The other day Caley and I were at the grocery store. She was extremely anxious, though she couldn't figure out why. All I could do, as I always do, was hug her. Tight hugs from loved ones help her regulate herself enough to navigate the world. They're particularly necessary at grocery stores, which are full of people and choices and loud noises.

This is made worse by the fact that those people are generally staring at Caley as I hug her. Seeing two adults hug and hold hands in public apparently is stare worthy. People come up with their own explanations of the reasons we're hugging. From the spitting and glaring, Caley's best guess has been that they think we're a lesbian couple. Which is a really sad indictment of the way couples who are lesbians are treated, by the way.

So we go from staring to glaring and the more people stare, the more anxious Caley gets and the more hugs she needs. The more hugs she needs the more people stare at us. It's a cycle that just gets worse and worse.

And then we go to the sandwich counter. Caley's nervous, but she's determined to order a sandwich before she leaves. I'm very proud of her, because I know how hard she's working, but how determined she is.

The lady behind the counter listens to Caley's order and starts making her sub. She looks at us, as I hug Caley and comfort her.
And then she says to Caley, "It's going to be okay. I don't know what's going on, but I can tell you're upset. But it's going to be okay. When I'm upset I think of my son and it makes me feel better."

Caley replies, "When I'm upset, I hug my sister and I feel better."
The lady said something else sweet that I can't remember, handed us our sub and we went on our way. As we left, Caley made sure to mention the lady's kind actions to the manager, so she got recognition.

I'm telling this story because I know the components - the grocery store difficulties, the staring - are oh so common for people on the spectrum. But this story shows the solution clearly. Kindness and compassion.

The important take away here is this. Small acts of kindness can make a world of difference. Instead of anxiety provoking stares or frightening glares, this woman reached out with compassion instead. And that transformed our whole grocery trip.
Small acts of kindness go a long way.

​-Creigh