J-Man has rarely been one to get fixated on an object and carry it everywhere. Glo-Worm and the music-playing caterpillar used to go with us in the car and to some degree around the house. The music calmed him down and made life better for everyone. Even then, they weren’t with him all day.

Yesterday during speech therapy, he was impressing the therapist with his ability to point to a particular letter on a block even when presented with several blocks to choose from. For good measure, he often said the letter. It’s hard to describe what a quantum leap forward this is for him. If you present him objects (ball, cow, book, for example) and ask him to point to the cow, it’s rare for him to do it. Give him a pile of letter flash cards and say, “point to the ‘A’,” he’ll point and get it right about 90+% of the time. I’ve got no idea either. The speech therapist was floored.

He particularly likes ‘K’ since it’s the one sound he’s been able to make consistently. Oddly enough, it’s one of the hardest sounds to make. One of the hardest for him is that B/P type sound - he almost never can - which is apparently about the easiest sound to make. It comes out this curious, guttural, glottal, whatever sound. In any case, he found the ‘K’ block and held on to it the whole session. He also decided he liked the ‘C’ block and held it in the other hand. So, with a block in each hand, he would ‘point’ his fist at whatever she was asking him to.

He held on to them throughout the therapy, which started about 9:00AM. He then kept carrying them… and carrying them… We went to Target about 10:30, and he carried them to the car. He carried them into the store, and in the shopping cart, and back out to the car, and back home, and climbing up and down the steps. He held on to them through lunch (both in one hand), eating with the other hand. We managed to pry them from his hands (to much unhappiness) while he ‘napped’ (ha!). When he got up, he grabbed the blocks again and carried them around through the whole afternoon and dinner and up to the bathtub, where we had to pry them out again (to much more unhappiness).

Finally I just hid them. Today, he hasn’t looked for them.

I have no idea why, but yesterday was Block Day. I’ve never seen him carry something around for the better part of 10 hours. Go figure.

Who said all this wasn’t interesting?

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!

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!

We got through it. Anything that can be described like that is a victory.

The dentist was really good. Turns out his wife used to work for the doctor who did the autism evaluation, hence the referral I assume. Regardless, he was calm, skilled, listened to us, understood the situation perfectly, and best of all, was quick. Can’t beat that!

I rarely drop the word “autism” into a conversation with a stranger about our son unless the conversation is actually about that. People’s automatic prejudices about that really get to me and only serve to piss me off, and if he’s acting a bit destructively - which is rare - I don’t want to be one of those parents who makes excuses for their kids. If I’ve heard “Oh, he’s just that way; he has ADD” while their child is rampaging around the playground knocking kids down and taking stuff from them, I’ve heard it a thousand times. I don’t care if J-Man is autistic or purple; I want to have the same boundaries and rules and expectations that I hope other parents have for their own.

He jogged laps around the waiting room and entertained everyone. He did many of his usual array of things others may find quirky, but since I find them endearing, I had a great time watching him. There was a ramp into the kids’ play area that he would take a step up, change his mind, and come back down. He did this at least two dozen times. He has this thing about inclines. He’ll do steps now with some help, but put a ramp in front of him and his wires seem to get crossed sometimes. He was his usual cute self and everyone responded accordingly, with adoration of our son like they’re supposed to.

That preamble has a point. I figured they had a “special room” at the dentist’s office somewhere. The office is enormous and there’s a fairly open area with dentists’ chairs all over the place. I knew we’d have to do some wrestling with him to get this done and I’d rather not do it in public, freak him out even more, and then freak out the other kids - many of whom were very young and a couple who looked like it was their first time at the dentist and wouldn’t understand why this boy was screaming while some large adult (namely, me) was piled on top of him. So I sprinkled “autism” in a couple of places during our initial conversation with the hygienist. We got the “special room”. I usually don’t work a conversation like this, but it turned out to make life much more manageable for everyone.

The hygienist made little headway into checking his teeth so we all waited on the dentist for a few minutes. Singing and letting him explore the common area helped him calm down and pass the time. He never sits still in a new place so we let him work off some of that until the dentist was ready. He talked to us for a few minutes about concerns we had, was very understanding, knew completely what to do, and generally made us all feel better. His usual bag of tricks (e.g. show the kid the little dental mirror and let them play with it before using it) was pretty much pointless, but I appreciate the sentiment. J-Man was in the process of going over the edge at that point.

Like everything else, the winning plan is to be quick. I sat him in my lap facing me, then we tilted him back with his head into the dentist’s lap, Mary took one arm and the hygienist the other, and the dentist worked his magic. He managed to get a good visual exam in during all the commotion. Good for him. Verdict - no problems with his teeth!

He did have some staining on his upper, front teeth, mostly because all he’ll drink is iced tea. The dentist said a little pumice on the rotating brushy thing dentists use (no clue what it’s called) would clean that right up. It would take about 30 seconds. We figured we could survive anything for that long and it would look a lot better. So, we decided to do it.

Reinforcements were waiting by the exam room door (an extra hygienist if needed). I literally laid across him (useful side effect is that deep pressure helps) to hold his body and feet, everybody grabbed an arm, and 30 seconds later, voila! He got some serious crud off. Ewww. Verdict - Stain gone, everyone survived, good enough.

J-Man recovered well (which is normal for him). I held him and walked him around for a few minutes and we sang a few rounds of Old MacDonald. By the time we got to the car, he was pretty good with life again. He was pretty subdued, but an OK kind of subdued.

Some things we learned:

• Preparation is 9/10 of everything. We tried to get mentally and logistically prepared before we even got there. We planned the whole day around it, timing meals, giving him some extra chill out time, letting him watch a little extra TV, lots of loving attention, etc. Best call of the day - put the soft shoes back on in place of the big boy shoes in case he kicked because they hurt less!
• Learn from prior meltdowns and keep trying to figure out the best way to get through something like this. Fifteen progressively worse haircuts were great lessons. Still, probably a lot more we can learn.
• Skilled, understanding professionals are worth their weight in gold. They really made it as easy as they could. Again, speed is everything.
• Ask around, get referrals, ask around some more. This is going to be stressful, shopping around for the best person is worth the time. We relied on the referral of someone we trusted and it worked out well. We will definitely be going back there.

Final financial damage - $68, and see you in six months. We’ll take it!

I claim my own sensory issues. I really don’t like dentists. I’m being very diplomatic in saying that. If J-Man takes after me, the end of the world may be nigh.

So, now we have to take him to the dentist tomorrow for the first time ever. It originally took months of therapy just to get him to let us near his mouth and to eat table food of any kind, then it took us months to get him to let us into his mouth with spoons, washcloths, etc., and then it took a while to get him to put a toothbrush in his mouth. He still fights us brushing his teeth with a brush (we usually use a textured washcloth), but he will sorta brush his own teeth with one (emphasis on ’sorta’).

So, we know his teeth need cleaning. He seems to have an overbite too. Nothing good can come of this when a dentist gets involved.

Autistic kids often have problems with their teeth, primarily because it’s hard to negotiate with a kid about dental hygiene when having someone pillaging around in their mouths when they’re sensory-sensitive anyway isn’t really on their favorite activities list. It’s not like “go get your toothbrush and brush your teeth” is a practical course of action either at this point.

Here are some other things compounding the problem.

• Our dental insurance has no pediatric dentists in network. How dumb is that? So, this is out of pocket. Great.
• I fully expect him to fight to the death in the chair. Remember, this is the kid who required five people (and me of 225 lbs practically sitting on him) plus an entertainment committee and his favorite video to sort of get his hair cut. This time some stranger is going into his mouth with shiny, sharp, scary-looking instruments. You must be joking.
• Distractions are pretty much useless with him after a certain point. Once he slides past that point of no return, ain’t nothing you can do to get him back except wrestle or take him home. In really stressful situations, honestly the distractions don’t much work regardless. It’s more how long you can delay the inevitable.
• I also fully expect them to give up and say “you’ll have to come back and we’ll need to sedate him. By the way, go ahead and leave your wallet with the receptionist.”
• I personally hate dentists. This does not give off good vibes to J-Man I’m sure.
• It never gets easy watching him go through something this hard on him. It kills me every time.
• If he has cavities, I may start drinking heavily when we get home. There’s a ‘package store’ two exits before ours.

The one good thing - the doctor comes recommended by the person who did his autism evaluation. So, let’s hope for the best.

Urf. We’ll let you know…

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?

I originally wasn’t going to weigh in on the recent, reprehensible treatment of Alex Barton by his kindergarten teacher in St. Lucie County, FL because it’s been written and blogged about at length all over the Web. I didn’t really know what I could add to it. But prominent bloggers who write about issues related to autistic children are calling for all who stand with Alex and his mother, Melissa Barton, to post their thoughts and show solidarity both with them and autistic children everywhere.

To briefly catch you up if you missed this, Alex Barton is a five-year-old boy on the autistic spectrum who - I can’t believe I’m writing this - was voted out of his kindergarten classroom after his teacher, Wendy Portillo, polled the class about whether they wanted him removed from class for the day. The class voted for him to leave by a count of 14-2. I wish I was talking about some alternate, bizarro, Survivor-esque universe, but I’m not.

[To catch up on the latest news, here's an article from the Palm Beach Post. There's a great post at Asperger Square 8 that you also must read.]

For what my thoughts are worth, here they are.

One of my biggest fears for J-Man is that other kids will regularly bully him in school just because he is ‘different’. Honestly, I fully expect it, and the hurt I already feel is terrible. He most likely will start preschool in our county’s autistic children’s program this fall. I confess my breathing gets shallower just writing about that. This will be a major transition for him, obviously, and I don’t need the fear of bullies making that worse. But that will be something I’ll have to deal with.

When I read that afterwards Alex kept repeating “I’m not special,” my heart broke. I tried to imagine J-Man sitting in the floor repeating those three words over and over again. I couldn’t. It hurt more than I could bear. Even writing this hurts. I can’t imagine being Melissa Barton right now.

As parents, we need to know that we can count on our children’s teachers, and for the most part, I believe we can. J-Man has had excellent teachers and therapists so far, and we are thankful every day for them. We need to know that people at our schools will be there to help our kids be the best they can be and serve as a voice that counters bullies and other people who might belittle them. We need to know we can count on them to treat our children as special and uniquely wonderful, not fear having to count them among the bullies.

Regardless of what anyone believes about children inherently wanting to rebel against their parents and adults in general, adults still have an incalculably powerful influence on them. When an authority figure teaches children, especially at that age, that excluding people who are ‘different’ from the community is OK, what do you think they are learning? What do you think that will translate into as these kids progress through school and into adult life? What kind of future are we creating as a result?

In a world overflowing with messages to exclude and reject those we do not like, those who are different, and those who ‘make us’ feel uncomfortable, there must be voices that proclaim the inherent and immeasurable worth in each person. We must be those voices.

Every kid needs the authority figures in their lives to accept them where they are. That doesn’t mean we’re not supposed to set boundaries and have rules and expectations. We start with a fundamental acceptance of the truth that every child, regardless of their abilities, has infinite worth. That is the foundation we must build everything else off of.

There are truths in our society that are self-evident and inviolable. We don’t get to put these things up for a psuedo-democratic vote. You don’t get to decide Alex’s or anyone else’s innate worth as a person and member of our society. That kind of world shouldn’t be allowed outside your TV. If you watch that kind of junk and take it seriously as something to emulate in your ‘real’ life, it’s time to go bury your TV.

In case I haven’t made my point clear yet - You don’t get to extinguish his light or anyone else’s. Period.

Shaming like this just leads to greater and deeper shame, creating this endless, horrible, destructive cycle. Kids who have special needs will get enough shaming in their lifetimes to make our hearts ache every day, if not every hour or minute. They need to know we’re sticking up for them.

They need to know that the people who love and value them simply for who they are will be ready and able to champion them no matter what. They need to know that our voices are stronger than those who either through intention or ignorance would tear them down. I hope in some way that my words will help him know this. And I hope every day that I will have the courage of strength and conviction to stand for them, no matter whose children they are.

There are lines you simply do not cross, and in this act, this teacher crossed it. As parents, we must hold that line without compromise against anyone who willfully or ignorantly breaches it. We are the first and last line of defense for our children. If not us, then who will?

What do I think should happen to Ms. Portillo? Schools have zero tolerance policies toward students, and I think teachers should have similar expectations and consequences for such egregious actions. She may just have been poorly trained and made a ridiculous error in judgment. I don’t know. And at the moment, I’m having a hard time caring about the difference between intent and poor decision-making.

Regardless, I think termination of her employment and suspension of her teaching license would be the minimum I would ever accept as a parent. If she finds some way to show by her actions that she has earned the trust needed to be a teacher again, then I believe in reconciliation, but I imagine that will be a long time coming. But my advice to her would be, don’t be surprised if many people neither forgive nor forget. You just don’t mess with our kids, and we won’t take ignorance as an excuse.

I try hard to find something to build from in every situation, no matter how awful the whole thing seems. Here’s what I found to hold on to from all this.

I’m heartened by the overwhelming support and action that has flowed forth from parents and bloggers of every kind from every corner. The world of autism has many factions, many controversies, and much disagreement, but mess with our kids and we will act as one voice. Our children are more important than our differences, and this has reminded us of that.

In the Internet age, we are serving notice. Acts such as these will find the light of day. We will make sure of it. We are watching and listening. We aren’t some tribal council; we are the entire village. We have spoken, we are speaking, and we will continue to speak until our children are treated with respect and dignity.

Given the challenges we face every day, we do not give up easily (or at all) and we have developed incredible endurance. We’ve had to. Autism is an endurance event. It requires all of who we are. We’ve learned that this is what it takes to help our children grow and thrive. And we recommit ourselves to it every day, by both necessity and by choice.

I wish my son didn’t have to work so hard at everything, but he does and does so bravely. He inspires me every day. If I can love him through his challenges by the sheer force of my will, I will. I celebrate him just for who he is. He has become my teacher. Maybe when this teacher decides to become the student for a while and learn what all this means, she will understand what all the Alexes of the world have to offer us.

Also, two kids - for whatever reason - voted against this abominable act. It’s been 30 years since I was in kindergarten, but I don’t recall going against your peers being any more popular then as it probably isn’t now. I don’t know their motivations, reasoning, or feelings about their choice, but I applaud them regardless. My hope for them is that their light of compassion, decency, and their sense of right and wrong is such that no teacher, adult, or peer can ever take that away from them.

I close with two messages.

To Melissa Barton - There’s nothing I can really say that could possibly relieve you of what you have to carry right now, but I will say this. We’ve got your back. You are not alone.

To Alex Barton - You are wonderful and special and perfect just the way you are. You are unique in all the world. Don’t let anyone ever tell you otherwise. Let your light shine. Let it shine, let it shine, let it shine!

OK, I’ve heard a lot recently about non or barely verbal autistic children being able to type and communicate like gangbusters. Typically this is for older children, though.

When you start seeing your own speech-struggling, not-terribly-receptive-to-word-games toddler identifying letters on a computer keyboard, that’ll freak you out, in a good way of course.

J-Man LOVES computer keyboards. He doesn’t bang on them at all, just thoughtfully presses keys here and there. I occasionally hand him one from our pile of surplus keyboards, but it doesn’t interest him as much unless it’s attached to a computer he can ‘accidentally’ reboot or delete files from…

In any case, he stood in front of Mary’s laptop and started playing around with the keyboard. Here’s the I’m-not-making-this-up summary.

M: Where’s the ‘K’?
J: (after a few seconds, presses the ‘K’ several times)
M: That’s right! ‘K’!
J: Kay-kay.

M: Where’s the ‘U’?
J: (hunts thoughtfully for about 15 seconds, then presses the ‘U’ many times)
M: That’s right! ‘U’!
J: (something like) uh-ooo!

[Daddy is currently scraping his jaw off the floor.]

[Crowd thinks, surely not another?!]

M: Where’s the ‘Y’?
J: (hunts thoughtfully for a few seconds, then presses the ‘Y’ a few times)
M: That’s right! ‘Y’!
J: (tries to say something like ‘Y’)

We repeat this for ‘M’ too, and after that he says ‘muh-muh’, at which time I’m simultaneously freaked out and dumbfounded and especially proud.

Maybe we should go get him one of those toddler computer-y things that talks back when you press a letter.

Dude. I don’t know what to do with this one yet. Well, except say “Yay!”

After last week’s wild travel adventures and being so far off our schedules that we might as well have been in a different dimension, we didn’t expect a whole lot on the progress front this week. Our goal this week was just to regroup and get back into the routine.

Our sleep has been erratic (and generally too little of it) and we’ve been racing to catch up with all the undone crap around here. We’ve had to do some extra work on a few things with J-Man to get going again, but on the whole it’s been a really positive week.

Talking started off a bit rough this week; getting him to ask for ‘more’ of anything was a total ordeal. Our usual pattern of withholding something until he asks for it - even if we know what he wants - wasn’t going well, and it was obvious he was less patient and getting way more frustrated than usual.

The last couple of days, though, he seems to have gotten back into it and then some. The fill-in-the-blank speech therapy work we do with stories and songs has gone gangbusters all the sudden. It’s clear he knows a lot more about the words in those stories and songs than we thought. He continues to surprise us every day.

We can’t help but do “Old MacDonald” since he fills in “oh-oh” after “E-I-E-I”, “cow-cow” after “and on his farm he had a…”, and then “muh-muh” for the cow sounds in the right places. The first time he did all that, we all teared up. It still doesn’t get the least bit old.

He surprised us even more by filling in some of the letters and words in the ABCs song and words in Dr. Seuss’s ABC book. If he needs a more obvious hint about what comes next, I’ve found that sometimes I can just mouth the word without saying it and he knows what to say. That was a pleasant shock, too!

So, obviously, the fill-in-the-blank work has been fantastic for his speech development.

The other major achievement of the week was that he fed himself almost an entire bowl of applesauce/puree with his spoon a couple of times! Sure it was pretty messy and he dropped some of it on himself because of the, um, unique way he holds a spoon, but I felt amazed watching him do that by himself. This is such a huge achievement for him that I can hardly put it into words.

He’s also branched out some from cheese toast to eating honey and butter toast as well, which seems to have helped the nagging cough he’s had for the past few days. It’s a small step forward into softer, more sticky and squishy textures, but for him every step forward is a hard-earned one.

I was a bit uneasy when I dropped him off at preschool yesterday because he threw a big crying fit, but I stayed with him in the classroom for a few minutes and he calmed down. He went off and did his thing and did well for the rest of the three hours. His teachers said he had much better focus during both art and circle time than usual. Given how fidgety he is and how un-fun he finds art, this made for a banner day!

I read about half of Stanley Greenspan’s Floortime book while on the various flights and have been experimenting with some of his suggestions. The J-Man has responded well to just some basic, low-key engagement, working with him on whatever he’s chosen to do rather than forcing him to do something. We’ve gotten some good eye contact that way and he’s easier to engage.

I’m not a Floortime convert or anything, but I do think it will form a piece of the whole puzzle of stuff we’re devising for him. The county schools use TEACCH here, so Floortime will compliment both that and some ABA activities we’re planning on doing by providing something more relaxed and free-form for him. He does so well with structure, but it does burn him out after a while, so we need something like Floortime to let him do some self-directed, easier stuff.

For those of you who don’t know what the heck I’m talking about, I do have plans to create a vocabulary page at some point.
That’s all from Chez Flashlight for today. Off to rest my strained wrist - my latest fatherhood/lugging around heavy-ass luggage injury.

Someone asked us what brand of fish oil we use for J-Man. It’s Nordic Naturals Children’s DHA. This isn’t so much the result of extensive brand shopping, but rather it’s what Whole Foods had in stock that satisfied some basic requirements.

Upon the recommendation of one of his therapists, we decided to try fish oil based on research that it has helped some autistic and children with speech delays or apraxia. “Helped” was measured primarily by improved cognitive testing scores and speech usage over a 90-day period. Because of its widespread use (I take capsules myself) and researched benefits for a variety of things - not to mention there doesn’t seem to be any indication that it does any harm - we decided to give it a try.

There are a lot of questionable products and practices out there involving supplements and other related treatments for autism. Fish oil seems at worst benign. First do no harm should be the rule for everything we try for our kids.

I don’t recall exactly what we paid for it, but 4 fl oz bottle of this brand (it’s berry-flavored liquid) should run about $14-15; an 8 oz will run about $25 or so. By my rough figuring, this is about 50 and 100 doses respectively. A dose is 2.5ml or 1/2 tsp.

From their product page, one dose contains:

EPA: 205 mg
DHA: 313 mg
Other Omega-3s: 113 mg

500 ish milligrams for EPA + DHA appears to be a fairly accepted sweet spot for fish oil for autistic and speech delayed kids in the couple of studies I read. Keep up with the research as best you can to see how this evolves. Largely they are taking educated guesses at this point.

Here are the requirements we set when we looked for fish oil:

• It had to be as pure and free of toxins and crap that are in low-quality fish oil as much as humanly possible. (generally this is down to fractions of parts per zillion)
• It had to be in liquid form because of J-Man’s severe oral defensiveness and lack of interest in eating anything weird or having it mixed in his food.
• It had to hit that 500 mg ’sweet spot’ (see above).
• A dose had to involve 1 tsp or less of liquid (i.e. 5ml or less) because giving him much more liquid than that in an oral syringe is extremely difficult. Hell would freeze over before he took liquid medicine from a spoon.
• We had to be able to get it fairly easily and not order it from Outer Mongolia.
• It had to not taste or smell like fish ass.

The Nordic Naturals stuff succeeded on all but the last count, though I don’t readily know what a fish’s ass tastes or smells like. I imagine liquid fish oil is a close approximation if nothing else. We realized pretty much no product is going to taste that great. I put a little on my tongue and found it tolerable. Mary found it disgusting, but she has Super Sensitive Nose so there was no hope there to begin with.

An important thing to note about this and other fish oil products is that many of them also contain Vitamin A. If your child is getting a significant amount of Vitamin A from other sources and supplements, be aware of this. Vitamin A in higher than recommend doses can be toxic. If you decide you need to give your kid a double dose to get to that 500mg point, make sure you aren’t doubling the Vitamin A into an unsafe range.

Like I said, fish oil in any non-capsule form - which is the fate of most of us with younger kids - can easily taste and smell like Charlie the Tuna’s feet, or worse. Even in its other ‘child-friendly’ forms (flavored chews, mix in their food type stuff, etc.), it’s pretty unpleasant. The feedback I’ve read is that fruit-flavored versions are generally the most palatable. One brand I saw somewhere has chocolate-flavored chews. Just thinking about this sends me running for the mental floss.

Here’s a link to the Nordic Naturals product page, if you’re curious. I get nothing out of this if you buy some, in case you’re wondering.

Standard disclaimer: Talk with your doctor, therapists, and other qualified professionals before giving your kid anything. I am not qualified to tell you anything other than what we are doing with our son. I’m not endorsing this brand nor are we advising you to give your kid fish oil nor are we claiming it will help your kid at all nor am I claiming that superstring theory is correct. With autism, there’s so much we don’t know. Treat all advice you get from people with that principle in mind. A recording this is. Yoda, yoda, yoda.

With some regularity, conversations come up about what ‘autistic stuff’ J-Man does and doesn’t do. I know some of these are stereotypical traits, but many of these come out of evaluations and the various ways we’ve tried to figure out his diagnosis.

So for the benefit of our readers who are wondering whether their kid is similar to ours, here’s a description of him and what he does, kinda does, or doesn’t really do. We’ve been recompiling this for his upcoming (re-)evaluations and preschool/IEP stuff, so we thought we’d share.

Obvious disclaimer: This isn’t a substitute for having your child evaluated. You are parents and you know your child better than anyone. If you suspect there might be a problem, trust your intuition. We are not advising you on how to evaluate your child. Go get them evaluated. Don’t just rely on some random people on the Internet. You’re smarter than that.

Reminder - he’s a bit over 2 1/2 years old. A doctor (psychologist with a bazillion years of experience at evaluating kids) diagnosed him with an autism spectrum disorder. He said that at J-Man’s current age, labeling him with “mild”, “moderate”, or whatever wasn’t terribly useful and likely to be inaccurate. He’s also been diagnosed with sensory processing (or sensory integration, depending on who you talk to) issues, apraxia, and motor planning issues, among other delays.

Significant issues he has:

• Severe speech delay - Obviously, yes. We figure he’s going on 18 months behind. The belief is that he has apraxia, which isn’t at all unusual in autistic kids.
• Communication problems - Struggles to communicate in other ways, too; sign language, etc. isn’t in his repertoire. Unless he can pick it up and bring it to you, he has a very hard time asking for things. He also will use your hands to do stuff rather than his own, which is something we discovered is a characteristic of autism.
• Rarely points at what he wants - That’s pretty self-explanatory. He tends to use much more broad movements, which are very difficult to figure out.
• Hand/arm flapping - Flaps his arms when he gets excited or overstimulated. Primarily he does this in the car (the moving scenery apparently is too much for him to take in) and in places like the store (especially ones like Target that are bright, busy, and red). It’ll also happen if he’s watching some TV show that gets him excited. Interestingly enough, he usually looks happy while he does it. The suspicion is that this is a lot of ’sensory overflow’ and doing this helps him order and calm his system.
• Learning problems - We don’t know cognitively where he is because he’s hard to engage in those sorts of activities, but he definitely does way better at puzzles and things like that when he’s calmer. We suspect he knows a lot more than he’s shown.
• Eye contact - Pretty poor, but it seems to be getting better lately. We can get a few seconds of it with people he knows well, not so much with strangers. He definitely is better with this when he feels pretty balanced sensory-wise.
• Sensory problems - Oh yeah; feeding, vestibular, proprioceptive are the biggies. We’ve known he’s had sensory integration issues since forever, and they still affect him a lot. The last couple of days he’s taken up sucking his shirt to soaking again. Yuck! He still loves exaggerated movement (throw over your head, swinging outside, bouncing on the exercise ball) and seeks out deep pressure (big hugs, firm back pressure). He also sleeps wedged in the corner of his bed and was a total swaddle baby. He finds sticky or slimy stuff on his hands really icky (finger paint = yuck). He dislikes most food textures, and will gag at ones he really hates. He’ll sometimes gag when he’s sensory overloaded regardless of what negative sense it is.
• Seriously picky eater - Eats just about nothing except toast, chicken nuggets, crunchy stuff like chips, and purees. He also has some reflux, but that’s minor at this point so I doubt it affects much here. No other GI issues have been indicated.
• Lack of imaginary play - He doesn’t really engage any of his toys in this way; he can be playful with others but I wouldn’t really call it imaginary, nor would I call his play with his peers consistent or much like what you’d expect for his age. His level of play is very cause-and-effect, meaning he presses some button and the toy does something back at him. It’s a much more literal way of interacting, which is another common autistic trait.
• Social awareness - He usually doesn’t acknowledge other kids in the room, but he’s pretty good with adult women (he’s pretty flirty). At preschool, he’s typically off doing his own thing.
• Joint attention - The fancy term for wanting to share with you something he finds very interesting. Example: Child sees a car, picks it up, shows it to you, and then looks at the car and then at you to make sure you are seeing it with him. J-Man does this very rarely, which is another characteristic of autism.
• Responsivity to order in learning - This isn’t so much an issue as it is a common strategy for autistic kids, but he responds very well to doing his ‘learning work’ in an orderly environment, at his little desk, doing specific tasks, without a lot of distractions. Imposing structure has dramatically helped out with his learning and growth.
• Travel - One or more nights away sucks; in the car is normally fine; he just won’t sleep well at all anywhere else but home - two nights away is pretty much our limit before everyone is sleep-deprived and mental.
• Fine motor issues - He has a very hard time manipulating certain objects; e.g., hard to feed himself with a spoon without a lot of help, though he has made great strides in the last week.
• Motor planning - He has a hard time figuring out how to accomplish many tasks, and only occasionally will successfully do something you ask him to do. If it requires a sequence of more than a couple of steps, he pretty much can’t do it yet. “If you’re happy and you know it stomp your feet, clap your hands, and shout Hooray!” is incredibly frustrating for him. You can see him trying to work out how to do it, but his body won’t comply. Yes, it really pulls at my heart to watch him struggle like that. We’ve wondered whether this has made sign language nearly impossible for him; we’ve been trying for over two years. That said, he has made great strides (literally) in the last week or so in going up and down steps by holding on to a railing or your hand. This is a major leap forward for him.
• Responding to his name - This is sort of borderline to me, but he doesn’t do this that well; it’s not so bad we can’t work with it, though.
• Walks on his toes - Yep, but usually only in short intervals.
• Poor muscle tone in his trunk/core muscles - In his arms and legs, he is as strong as an ox on steroids, speed, and Starbucks, but he ain’t going to be on 8-Minute Abs any time soon. Related stat: I weigh 225 and he has knocked me flat on my butt from standing.
• “Flight Risk” - If you put him down, he’s usually going to take off running. We’d never be able to set him down in a store or a mall. If we did, he’d be off to the races. This happens outside too. It’s exhausting to say the least.

Issues that aren’t too bad:

• Fixation or attachment to a particular object - He was pretty attached to Glo-worm and his Leap Frog caterpillar early on, and now he’s pretty fixated on his piano keyboard and other things that make music, along with some of his books. He can get pretty zoned out on them, but not so bad that you can’t break him away from it with some effort or that he doesn’t get up eventually and go do something else. We do have to sometimes hide whatever it is so we can keep him focused on us enough to do his therapy work when the zoning out gets to be a problem.
• Emotional awareness - He’s pretty good with understanding people’s emotions, especially when people are laughing or are sad.
• Sensitivity to routine - We do keep a routine, but mostly out of habit from back in the days he wouldn’t sleep and because it helps him learn better; we can vary it without any real issues as long as we’re not out of town and as long as we give him some downtime in the afternoon.
• Needing physical order - It’s very important to him to have all the doors closed wherever he is. This is annoying sometimes, but not a big deal in the grand scheme of things. I’ve noticed that there are a couple of toys he wants in the ‘right place’, but why these few and not all the others is a mystery to me.
• Sleep issues - Rarely naps anymore but does sleep through the night (12 hours on average); this is SUCH an improvement over the first 18 months when he never slept through and often got up every 2-3 hours.
• Gross motor - He was a very late walker (almost 23 months) so this used to be a real problem, but he’s pretty self-reliant with this now even if he’s still a bit behind. He definitely has his own style, but he rarely falls. Going up and down steps upright (though still with a lot of help) is a recent highlight. There are a lot of steep stairs around, and heights freak him out, so this is a real challenge.

Issues we haven’t really seen:

• Regression - His development has been very slow on various fronts, but he still has steadily improved. We have setback weeks from time to time, but our overall trajectory is toward improvement. He didn’t have a bunch of words and skills and then lose them like some.
• Self-destructive behavior / self-injury - He’s smacked himself in the head a few times, but nothing at all that we’ve worried about. I can’t even remember the last time he did this.
• Uncontrollable tantrums - Never; he does a great job dissipating his frustrations and rarely pitches a fit for more than a couple of minutes. He does some pitiful drama and then we move on.
• Repetitive behaviors - Very little except for the hand/arm flapping.
• Lining stuff up/compulsive organizing - Pretty much never. Our house is often a wreck and he doesn’t seem to care. Like I said before, he has a couple of things that seem to have a ‘right place’, but it’s so minor that it barely registers as anything more than a quirk to us.
• Fixation on orderliness - Doesn’t seem to care if we move stuff around.
• Detachment - He’s very attached to us, loves being with us, and often wants to be held. If you’re familiar to him, he’s very loving. He’s hit or miss about strangers, or even acknowledging that they’re there.
• Aggression - We’ve had it repeated to us several times that an aggressive act is not the same as aggresion. He’s so fidgety sometimes that he can be rough as he rolls all over you rather than sitting still. That said, he hasn’t struck out in anger that I know of.
• As far as we know, his hearing and vision are fine based on previous tests.

Phew. Got all that? We’d love to hear how your child is similar or different from this. They don’t call it a ’spectrum’ for nothing, and there’s so much for all of us to learn. I didn’t even cover a bunch of stuff. If you have questions, feel free to ask!.

We took J-man to the doctor yesterday for a physical. The county requires one as part of the paperwork to get him into the school system setting, versus the Early Intervention setting. The office did very well getting us in on time, but the J-man was NOT HAPPY about being there. He certainly knows that the doctor’s office is rarely a fun place for him.

While we were there, the doctor talked to us a good bit about what we were doing in terms of therapies and the like, and what our plans were for the near future. We told her about the special preschool J-man attends, and his speech, developmental, and occupational therapies. We talked about food, and how what he eats is limited by his sensory issues, and she gave us a few tips about getting some extra calcium into him.

She seemed pleased at the progress he is making, and understanding of how far he has come, although he’s still delayed in most areas. J-man wandered around during that portion, so she got to see him not freaking out… and called him adorable. (Of course she did. He IS adorable.)

Then she said, “It’s so great that you are doing this now when he’s
so young. The earlier the therapies start, the better the outcome usually is. You guys are doing a great job.”

It was nice to hear that. It’s especially nice because I never feel like I’m doing enough, but I also have to have a life too, so I’m constantly pulled in two ways. (Or seven…)

When we were finished, and J-man was all dressed again, she asked him if he was ready to go and get in the car. He looked up at her and raised his arms, and said, “GO CAH!”

Go man go!

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!