If you live in North Carolina (like we do), there’s a fantastic resource called Generations-Tadpole that a few people and a couple of therapists mentioned to me. We haven’t used it yet, but I’m sure we will.

The best way I can think of to describe them is like Netflix for assistive and augmentative technology. If you live in North Carolina, you can borrow something out of the ‘library’ for a couple of weeks, try it out, and then return it. The best news - unless I’m missing something (and I asked around and looked on their site) - is that for NC residents it doesn’t cost you a thing, not even for shipping. Of course, you actually have to return things on time.

Obviously, one of the main issues with assistive technology in general is that there’s no easy way to try it out without spending tons of money on something and likely being stuck with it if it doesn’t work for your child. This stuff is way expensive (makes me think I’m in the wrong line of work) and not something you try out on a whim usually. Our local Early Intervention office has a lending library of their own, which we’re going to try to use before our time in EI runs out soon. From what I gather, it gets a lot harder to get loaners from the preschool system just because their inventory is always checked out. At least that’s apparently the case in our county.

Our primary interest is in ‘augmentative communication’, or ways to help J-Man better communicate with us and others. They also have a bunch of other resources such as learning and literacy aids, devices to assist with daily living, loads of educational CDs and DVDs, computer software for kids, and more learning toys than you can shake a stick at. There’s a bunch of other stuff too.

After reviewing Tadpole’s inventory, I noticed one issue that our developmental therapist gave us a heads-up on - augmentative communication devices often talk for the child through pre-recorded phrases assigned to the buttons, so partially-verbal kids whose verbal skills are improving (even if very slowly) may derive little or no real benefit from these devices.

If an older child with a very limited spoken vocabulary needed to ask certain kinds of questions that they couldn’t sign or communicate non-verbally, provide certain responses to questions also not easily communicated non-verbally, or generally needed to interact in some fashion independently of someone who could ‘translate’, I could see the real value in this. If a child got lost and needed to say “My Mommy’s name is Jane. Her phone number is 555-3333,” then a programmable device like this could really help. Since some of them can also be reprogrammed or significantly customized, they are quite adaptable to different situations.

But that brings us back to the original problem. J-Man can point to a picture for a handful of things (mostly food), and often say something that approximates the name of that item while he’s touching the picture. This really helps clarify what he wants. The pictures are a stepping stone to expanded speech. They do stand in for the speech itself sometimes, but it feels like the available technology is largely on a different path right now from where we are. While it would be entertaining to get more complex things from him than ‘cup’ (just waiting for a recorded version of “Daddy, you smell like a baboon’s butt.”), it seems like digitized phrases aren’t yet a part of the path we’re on at the moment.

That said, the yes/no switches might be worth playing around with. I’m willing to play 20 Questions with him if it helps better narrow down what he wants (and assuming he gets the point of it), but I’m uncertain about how well that fits into our current plan. It’s free for us to try, so we’ll play around with their inventory to see what we see.

I think a gap in the range of these devices comes on the lower-tech end. A more portable, configurable, extensible picture system - without all the programmable recordings - would be a real benefit to us. I know a simple, small photo album works for some kids, but J-Man doesn’t seem ready to flip through something. He needs to see all of his choices at once. Given what I’ve seen, I may have to sit down and actually design one that works for him. It’ll give me an excuse to go to Lowe’s if nothing else.

If anyone knows of other lending resources, feel free to comment or e-mail us!

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.

Recently we have been laminating fools over here in the Flashlight household. The J-man has really been into his alphabet flashcards, so we decided to laminate them before he completely shredded them. While we were at it, we (OK, Tim) laminated eleventy-seven pictures of things for the J-man to do. Some were therapy related (the desk, etc), and some were fun/reward kind of things (the swing, the computer game). Tim posted them on a piece of posterboard using velcro dots, just like we did with the food pictures. That posterboard is now hanging in the kitchen, right at the door to the classroom. We haven’t introduced it at all, though. We haven’t even pointed it out.

I was bustling around the kitchen cleaning up and making dinner, and the J-man was running around doing his thing, when he came up to me with the picture of the computer game in his hand. I’m not sure if he had been pointing at it before, but he made SURE I knew he wanted to play with it. What could I do but set him up to play? Besides, it let me cook dinner without worrying about him being near the stove. SCORE!

Estee over at The Joy of Autism blogged today about knowing her son knows much more than he can verbalize. Seeing the J-man carry over his knowledge about how the food board works to the actions board reinforced our belief that he knows SO MUCH MORE than he can say. If he’s anything like his daddy, he’s going to be crazy smart, and it looks like he’s heading in that direction.

Also… we cut his hair again tonight. It was not NEARLY as easy as the last time. Sigh. Poor monkey. He didn’t even want to be near me afterward. Talk about your Mama Guilt!

The J-man has a new and exciting talent - the ability to say a whole phrase. That phrase? “My name is ‘J-man’!”

It goes like this:
Mama: My
J-man: muh-muh
J-man: na-na
Mama: name
J-man: i-i
Mama: is
J-man: na-na!
Mama: ‘J-man’!

[We assume you know that neither 'na-na' nor 'J-Man' is his name, and in both instances he and Mary got his name right. ]

He’s getting so big, and it seems like it’s all of a sudden. We had to switch to Good Nites instead of the Huggies Overnights because he outgrew the size 5s in what seemed like a week. He’s wearing “big boy shoes” every day now, and thankfully the Preschoolians came in, because the other shoes were getting harder and harder to put on. He’s VERY clear about what food/drink he wants now, and will go over and BANG on the picture if he thinks you are ignoring him. Tonight was the best stair-climbing he’s ever done, with very little leaning on me.

In terms of communication, it seems like a lightbulb went on over his head. Now he gets that if he makes the sound, he gets what he’s asking for. He’s so proud of himself - now he runs around and bangs on his belly and yells.

My little boy is growing up, right before my eyes.

Given J-Man’s sudden proliferation of letter recognition and continued progress with picture communication, it looks like he may be a prime candidate for some sort of assistive technology device to help him communicate. While I’m a self-professed geek, I don’t know the first thing about what the technological possibilities are for him. I know a lot about designing web sites for people who use screen readers and otherwise creating accessible web sites, but I don’t know jack about what devices an almost-three-year-old could use to communicate.

Since his speech therapist seems to believe it’s likely he’ll have a hard time being understood for a long while even if he starts getting more words out, this is a path we need to consider.

So, this is where you come in. We’re looking for anything anyone knows about assistive technology for helping autistic toddlers communicate, or kids in general. Please leave a comment in this post or e-mail us privately and let us know your experience. We’d really appreciate it.

Here are some questions we have now. Obviously there’s stuff we haven’t thought of, so please feel free to stray from the questions and tell us everything you know.

• Have any of you used any sort of assistive technology devices to help your kids communicate? If so, what devices and how well did they work?
• Do you know of any good web sites that provide helpful and accurate info about this? (I looked up some stuff on Google real quick and the sites were either marginally informative or just broken links.)
• I have heard that it’s a requirement that assistive technology be discussed during the IEP process and a determination made about whether it’s appropriate for your child. If that’s correct, has anyone gotten their schools to cover this? If so, how hard was it? Did they approve something that was the equivalent of a 20-year-old laptop and you have to pay out of pocket for something that worked well?
• What’s a good way to get ‘loaners’ and try this stuff out before money gets shelled out for it?

Really, just tell us anything you know. We’d be most grateful. Thanks!

Awesome Baby!

Pepaw (my dad) gets the award for helping J-Man make one of his best achievements this week. He got him some flash cards at the dollar store. One of the packs was for ABCs, with one letter and a picture under it per card.

He put A-F out on the coffee table and said, “Can you point to the ‘A’?” And by God, J-Man went over and pointed to the A. Then showed off and did it for the B too after being asked. Oh, and to add a degree of difficulty to it, he did the B from the backside of the coffee table, which meant the B was upside-down from where he was looking.

Woo hoo!

His letter recognition has suddenly become a source of a potential foothold into speech with him. The speech therapist is starting to think some combination of a more robust picture system and letter-based communication (potentially with assistive technology of some sort if it really takes off) might be a short and medium-term solution to our communication issues.

The more technological resources are obviously for down the road, but we’re pondering ways to improvise a low-tech version (pictures and cards) for where he is now. Our hope is to come up with something that will work until his speech can have time to grow to a point where he can use it relatively comfortably and effectively, which may still be a much longer-term goal. We just don’t know.

In any case, those details are for tomorrow. Now we celebrate!

This post was brought to you by the letters A and B, and also K, which is still my favorite letter. - J-Man

I promised this post a while back. Sorry I’m just now getting around to it.

For kids who have severe speech delays and are unable for whatever reason to sign, some variation of the Picture Exchange Communication System (PECS) - known more around here as the ‘picture board’ - is a great way to get some sense of what your child wants. The fundamental principle - any kind of communication is good communication. (You can also read the Wikipedia article, though I couldn’t readily find an easy-to-read description of it.)

I use “some variation of” in the above paragraph because the PECS inventors have a specified way of doing it, and I imagine we ain’t following it to the letter. But that’s OK. This is working for us so far and I’ll tell you how we do it.

Standard disclaimer: Again, this is how we do it and isn’t intended to tell you how you should do it (or even whether you should do it) for your child. We’ve worked on adapting this to work for J-Man in concert with his speech therapist. Your speech therapist will be your best resource in developing a plan for your child.

That said, I think this is worth trying out if you aren’t getting communication by voice or sign. It’s worked well for us, and it comes highly recommended for kids with autism, apraxia, and other severe speech delays.

OK, here’s the picture board. Obviously, the board focuses on food. I’ll tell you why in a second.

[Top row - crackers and puree; middle - tea and chicken nuggets; bottom row - cheese toast and puffed veggie sticks]

It’s a simple piece of dark poster board (so the pictures show up better), tacked on to the wall with double-sided sticky stuff. Underneath the pictures are velcro dots, with the opposite part of the velcro on the back of the picture. The pictures were taken with a digital camera, printed on our home printer, and laminated. They can be detached from the board as needed to swap out pictures or use them for something else.

At first we pretty much moved him over to the board, took his hand, touched it to a picture, then handed him that food item. We repeated this routine for a while, but to our excitement he picked it up pretty quickly. We started with just 2-3 pictures and worked our way up to the current six. You definitely want to keep the choices few and simple at first.

The next breakthrough came when he essentially would punch the picture of what he wanted on his own (first big want - corn chips…) and then he would get it from us. He didn’t make a vocal noise to go with it, but he got his point across and everyone was happy.

Even better was when he’d reach for something and we’d say, “use your pictures!” then he would go touch the picture of that something and come back to us to get it. I’ve even seen him hand me something he wanted, go completely across the downstairs to touch the picture, and then come back to get it!

Lately it’s gotten really good. He’s giving us his words (or word approximations) while pointing (we’re tickled stupid when he points with his index finger) to the picture. This nearly knocked us flat the first time he did it. We still sometimes have to prompt him to point to the picture even if we know what he wants. We want to keep reinforcing the pictures, and so far that’s worked very well. In all likelihood, this will be our most effective form of communication for a good while, though clearly we’re seeing great verbal improvement as well.

So we usually get:

(All caps means the stress is on that syllable.)

• Points to tea -> “KUH kuh” (for ‘cup’ - he makes these syllables longer in duration for ‘cup’, which is important since he uses ‘k’ sounds a lot)
• Points to chicken nuggets -> “NUH nuh” (for ‘nuggets’)
• Points to cheese toast -> “CO co” (his word for ‘toast’ since he substitutes ‘c’ sounds in for ‘t’ sounds)
• Points to veggie sticks -> “keh keh” or “k-k” (like two, breathy ‘k’ sounds said quickly - hard to describe - which is what he does to several words that end in ‘k’ or ‘ks’ like ’socks’)

It’s hard to describe what a miracle this is.

Minor variations - for cheese toast, he may do the above and then go to the toaster, reach for it, then say “coco” again. For nuggets, he may do the above, go to the microwave, reach for it, and say “nuh nuh” again.

He’s not been into crackers lately, so that one’s been ignored for a while. When he was on a cracker binge, he pointed to it a lot, I think largely because he was so excited that he could actually say ‘cracker’.

I promised I’d say why we focus on food and not toys and other stuff. The main issue we’re facing is that the pictures represent something literal to him. With food, what’s on the picture is what he gets. It’s a literal representation of that food. Except for one. Bonus question - which one doesn’t work very well and why?

With toys, a picture of a book means I want THAT book, not just any book. This means that if he’s faced with choices on the toy board of a few things he really doesn’t want to play with, he won’t pick any of them. We have a toy board, but it has been a flop so far compared to the food board. The food board has the advantage of that he only will eat a half-dozen actual foods. So literally everything he eats can be captured on that board. Still, we are staying at it on the toy board. Someday it’ll click.

We have been unable to generalize the objects in the pictures, though that’s the long-term goal. Eventually, the idea is to have a picture of just about any food mean “I’m hungry” with the next step being a way to choose what specific food he wants using specific pictures. This creates a sort of decision tree that could be consolidated into a book if need be.

You might be able to see where a system like this starts breaking down. If you need a literal picture for everything your child might want, you could end up with hundreds of them over time spread over picture boards all over the house. You can put them into a ‘picture book’ (basically a portable photo album), but you need to get to some way to work through it without flipping pages all day.

Our therapists have described the eventual goal in these steps: 1) Child picks a broad category of want (food, drink, toy, book, person, etc.), 2) Parent or child flips to the section that shows individual pictures related to that category (let’s keep with food for this example), 3) Child picks specific want from the pictures in the food section (e.g., toast).

It’s step 1 that we can’t get past yet, and that would probably be the case for most anyone starting out with this. J-Man doesn’t generalize from a picture of any food or a picture of any drink to “I’m hungry” or “I’m thirsty.” Choosing a picture means “I want that.”

In addition to those goals, the idea is to transition to other representations of the objects rather than just photos. This could include more cartoonish drawings or even line drawings. Obviously the primary goal is to get him to communicate well verbally, but again, any communication is good communication. If this helps him communicate his needs until speech can someday catch up better, then we’re all for it.

Answer to the bonus question - the puree. Because puree could mean any puree (applesauce, pears, sweet potatoes, whatever), so it’s not literal. Therefore, he pretty much never picks it because it’s too vague a choice.

Someday I’ll try to get a video of this. Whenever we pull out a camera, he either hams it up or stops doing whatever he was doing, so we’ll need to be subtle about it.

In the meantime, if you have questions about how we do it, feel free to ask. We’d love to hear from anyone else using this approach as well. Thanks!

Little Man has decided that the WORD for cheese toast is Coco. He can’t say a “t” you understand. He walks over to the counter where the toaster oven sits, and says, “Coco.” That’s right, he SAYS it. Just to make sure I was understanding correctly the first time, I asked him if he could point to the picture of what he wanted… and he ran over to the food pictures posted in our kitchen, and pointed at the toast, with his index finger. Then I fell over into a dead faint and he revived me by sloshing cold tea onto my face and yelling, “COCO!”

For those of you not in the know, index finger pointing is very difficult for the J-Man, and for many autistic kids. They just don’t understand that the finger is pointing towards something. Lately we’ve had index, middle, and thumb pointing. As long as it’s not middle finger pointing at me, I’m for it. I still get him to point at the picture of the cheese toast, just to reinforce that the picture board is another way for him to communicate.

There have been a few days lately where J-Man has had 3 pieces of toast in a day, because I’m so thrilled that he’s asking for something so clearly… and I can’t NOT give it to him. He’s become quite the toast stealer in general – if I have toast for breakfast, I should just go ahead and make an extra piece because I know he’s going to take one of them. Me: “What do you want to be when you grow up?” J-Man: “Coco stealer.” Me: “Getting a head start on it I see…”

And for your listening and viewing pleasure, Heywood Banks and “Toast”: