Iago is 6mo

Iago is 6 months old! Actually, she's almost 7mo at this point. She was about 6.5mo when these pix were made. But hey, I'm kinda busy, and at least I'm updating now, right?

Iago continues to thrive and do well. In the last 3 months she's gained 5.5 pounds and grown 3". The doc was impressed with those numbers, but didn't seem particularly impressed when I attributed it to going gluten free in addition to milk/casein free. Ah, what does she know? She's just another in-the-box doctor. At least she didn't openly disagree with me, and she doesn't even mention shots to me anymore! So I guess I shouldn't complain. Still, what about all the other moms out their who aren't going to be able to figure things out on their own? Sad. But anyway, Iago is doing fantastic!

For folks with autistic kids out there, who say "My kid is functioning on the level of a 3-4yo" I'd like to give you some examples of the social interactions of a typical 6mo, all things Iago is doing, without having to prompt it out of her.

Iago pays attention to who comes into a room and who leaves it. She thinks her brother SB3 is hysterical and laughs at his antics. She averts her eyes if you are too "in her face" or if she needs a break. She glances at mom when something unusual happens, studies mom's face, and then smiles back if mom is smiling at her. She has a couple favorite familiar toys, but wants to explore new things and make sense of them. She'll go to strangers, but keeps a very close eye on mom, shifting her attention between the person holding her and mom, until she decides she'd really rather be with mom, at which point she glues her eyes on mom and leans her body towards mom and away from the person holding her--great nonverbal communication and demonstration of people preferences. She gives mom the evil eye with a "why are you doing this to me???" look and arches her back to try to escape when she doesn't want to get strapped into a car seat--more great nonverbal and social communication. :) She likes to people watch and kitty watch. She turns to look at you when you make a noise or call her name or say something clearly directed to her, and then responds to your face appropriately (smiles back if you're smiling, looks perplexed if you're growlIng at her and then looks away to avoid the unfriendly face).

I could come up with more things, but you get the idea. There's nothing unusual in there for a typically developing 6mo. She's going exactly what she's supposed to be doing. What I guess I want to highlight is that folks who say their autistic kid is functioning at the level of a 3-4yo, or a 5-6yo, or something like that, they are usually seriously overestimating where their kid is really functioning socially. Unfortunately, the reality is that many if not most autistic kids, even the "high functioning" ones, are often WAY behind the those loosely spoken estimates. Granted, those kids have a great diversity of strengths and talents mixed in with their challenges, so "on average" a claim of "functioning at the level of a 4yo" might be close, but in reality the kid may be functioning at the level of a middle schooler with certain academic skills, at the level of a 4-5yo at the level of self-help or hygiene skills, and at the level of a 6mo on real social and problem solving skills. They may be able to build amazing lego creations or shoot and edit cool home videos or recite back to you every baseball statistic you never wanted to know, but that doesn't mean they are doing a great job of monitoring their environment, tracking people's movements and intentions, communicating with people both to express what they are thinking and to figure out what the other person is thinking and then trying to incorporate that into their new understanding of the world. It seems the vast majority of folks on the spectrum are stuck somewhere in the 4-8mo range when it comes to real functioning social skills development, but with a bunch of splinter skills (such as language) layered on top of that. We spend a lot of time helping them memorize and hopefully apply rules to compensate for their lack of social development beyond the infantile level. And that's okay, to a point. But real improvement comes when we help these kids actually strengthen and Develop beyond those beginning levels. Oh, and if you're wondering how to do that. look into RDI.

Back to the really important stuff: Iago is totally cute and awesome! :)

Jamberry recommends . . .

"The Book of Learning and Forgetting" by Frank Smith

"Temple Grandin" DVD from HBO

"Abide in Christ" by Andrew Murray

Terrible, Wonderful News

First a little background: Jman, of course, has autism, and he happens to be one of those kids who does much better on a gluten-free/casein-free diet. (Gluten is a protein found in wheat, rye, and barley (and oats unless they are listed as specifically gluten free). Gluten is what makes baked bread hold together, giving it a sort of spongy texture. Casein is the protein found in milk, as opposed to lactose which is a sugar found in milk. Jman has been “gfcf” since he was almost 3 years old. Several years ago, we tried (HE tried) reintroducing gluten back into his diet (he began making and eating peanut butter sandwiches) and after a few weeks had noticeable changes in his bathroom habits and abilities. And so he became gluten free again, and will likely stay that way forever. We didn’t even try adding cow’s milk back in--he’s always responded more dramatically to cow’s milk than gluten. So Jman is gfcf, and will be staying that way.

And a couple years ago we had SB3. When SB3 was about 2 months old, Habeeb and I noticed that he had those perpetually rosy red cheeks along with a somewhat stuffy nose, and we knew what that meant, because we’d seen it in Jman: SB3 was also sensitive to cow’s milk. And so, since SB3 was exclusively nursing, I became casein/dairy free. Those rosy cheeks quickly cleared up, along with the congestion, and SB3 was hunky dorey, unless I “cheated” and had something with dairy/milk in it, in which case the rosy cheeks and stuffy nose returned for a day or two. However, SB3 was always “all there” developmentally, and still is. There isn’t an autistic bone in that boy’s body! I have always wondered, though, what might have happened had we given SB3 his initial vaccinations before we figured out that his immune system was already busy fighting a milk allergy/sensitivity. Perhaps the shots would have been the “something” that overtaxed his system and pushed SB3 over the edge into the world of autism. However, he did NOT get those shots (on purpose), and we DID figure out his milk issues, and SB3 is just fine (and still shot free, thank you very much).

And then a couple of months ago we had Iago, also exclusively breastfed. Iago didn’t have the rosy cheeks going, or a terribly stuffy nose. But boy does that girl spew! She clearly has had some reflux issues from the beginning, even in the hospital before we came home. She would spew curdled milk, even through her nose, even choking on it more than once. Not pretty, for such a pretty little girl. So, that was general observation #1: Super spewy girl, beyond the norm (aka, “reflux.”)

When Iago came home, her bilirubin numbers were kind of high, and her weight was kind of low (maybe all that spewing!). So, we took her in several times to check both numbers (bilirubin and weight) to keep an eye on her jaundice and to make sure she was growing sufficiently. It took her three weeks to get back to birthweight, but less time to get her bili numbers and jaundice under control (sunbathing can be a good thing!). During this whole process, the doc/nurse kept asking how many wet and how many poopy diapers she had in a day (enough), and kept asking if she had transitioned to ‘yellow curdy’ poop yet: Well, no, she hadn’t. It wasn’t meconium anymore, but it wasn’t proper yellow curdy breastfed baby poop either. But after a weekend of mom-inflicted “booby boot camp” her numbers were good, even though her poop still wasn’t yellow curdy, so the folks at medical quit worrying.

I have to throw in another side story here. During this whole ordeal, the doc kept telling me to supplement with formula to make sure Iago was getting enough to eat. But I knew that was NOT the answer. There was nothing going on that “corn syrup solids and cow’s milk” was going to help with. My milk supply was fine. Iago just needed some “booby boot camp” over a weekend to learn how to nurse more effectively. Yes, sometimes babies need to be taught how to nurse! Anyway, after that weekend, she starting putting on weight at the typical rate (1 oz per day), and has been doing okay since. Supplementing MAY be truly necessary in some cases, but it’s my opinion that “the establishment” is MUCH too quick to suggest and encourage and almost “prescribe” formula rather than supporting the mom and baby in establishing good breastfeeding. Moms, don’t get intimidated by the docs. You know at least as much as they do, and maybe a whole lot more. Just because they don’t think so doesn’t mean a thing! And if you want to breastfeed, do all you can to NOT supplement. Your breastmilk is SO much better for the baby than dehydrated liquid extracted from some animal of another species, reconstituted with corn syrup solids and a limited mix of nutrients, and nothing for the immune system. Ack--kind of gross when you think about it, and clearly deficient. Plus, there’s all that bonding that goes with breastfeeding that doesn’t compare to sucking corn syrup from a tube of plastic. Again, if you HAVE to supplement, go for it, but consider whether you REALLY have to. In this case, we totally did NOT have to, and yet kept getting pressure to do so. Even though I was balking at “cow’s milk” given my other kid’s issues with cow’s milk. Docs just don’t always THINK or LISTEN. Be strong!

So, back to the main story: A few more weeks pass, and Iago was continuing to nurse well and to grow (despite the lack of cow’s milk and corn syrup! ha!). But she still hadn’t developed that nice yellow curdy breastfed baby poop. Instead, she was pooping stuff that looked more like dark honey or maple syrup, slimy and mucusy, with some very small seedy looking things mixed in a bit. Mostly it was just dark mucusy nastiness. This was not right. Thanks to Jman and his gut issues, I know poop (unfortunately), and take it fairly seriously, especially for a little one, and this was not pretty poop.

To make matters worse, Iago was very disconnected. By 6 weeks, Habeeb and I had no doubts that SB3 was just fine, no autism at all, but not so with Iago. I had to work so hard to get her attention, and so hard to keep her attention. Instead of being all smiles, she just looked past me, over my shoulder, or through me. She wasn’t “there.”

Yes, she was only 6 weeks old, and no one diagnoses autism at 6 weeks old, but I was NOT liking what I was seeing: Disconnected socially, nasty baby poop, awful spews, plus an autistic brother. It was time to take some action.

Instead of waiting for her 2 month check up, I took Iago in on her 6 week birthday to at least get my concerns documented in her medical record. Doc humored me and ordered several stool labs. It took about 2 weeks to manage to get the stool samples collected, due in part to weekends (lab closed) and due in part to her stools being simply hard to collect (even good brand new baby poops are often more frequent and smaller in quantity, and add mucusy to that and you can imagine the fun and challenge!). But I got it done--5 labs worth of samples--and waited for the results.

Actually, I didn’t just wait for the results. I also called that very afternoon (a Friday) a doctor with a huge clue: Jman’s old DAN! doctor from Florida (DAN! is “Defeat Autism Now!”). Jman hadn’t been to see her in three years (since we moved away on short notice), but I left our info, including that Jman was a previous patient, and my concerns about Iago, and that she was just 6 weeks old, and hoped and prayed that we’d get in a lot sooner that the three year wait list. Docs don’t often have the chance to fix the problems that soon (6 weeks old is soon!), before the small problems become big ones. Sure enough, I got a call back on Monday scheduling Iago for a phone consult on Wednesday. God is good! So I filled out the long new patient intake form and looked forward to Wednesday.

Here’s another side story about how God is good: I was stupid and missed the Wednesday phone consult! I forgot about the time zone difference and called an hour too late! I was SO upset! But I called and left a message, and I emailed as well, and then I just sat and cried and yelled at myself for being stupid. But after a few minutes, I checked email again, and they had already replied back saying “Call now!” I did, and the Doc was available and we had a great phone consult. And I will NEVER screw up time zones and phone consults again! God is good!

By the time I spoke to the DAN! doc, I had already gone completely casein (milk/dairy) free again. (I had been able to ‘cheat’ some and not have it bother SB3 too badly, but now I stopped the cheating to see it that would help Iago). Doc said to also go gluten free. Casein and gluten are two of the most ‘inflammatory’ proteins molecules, and the mucusy poop meant there was intestinal inflammation. Going gfcf all the way was important. Thus, I became gluten free as well. Also, I had been on antibiotics after the delivery and during week 2 at home, which meant Iago had been on antibiotics too through nursing, and during the time when her poop should have been transitioning over to that lovely yellow curdy breastfed baby poop, which it of course never did. Thus, both Iago and I went on probiotics to establish good gut flora, which is also an important component to a good immune system, which would help with fighting the inflammation also. I had already picked up from the local health food store the probiotic specifically for infants (yes, there’s particular strain that predominates in infants, and the gut flora changes as we age and develop--I got her the special infant strain). Lastly, the doc put ME on high doses of Vitamin D3, which also helps the immune system (and bunches of other things too). Thus the plan: gfcf, probiotics, D3, call back in two weeks.

Another side story: Just before calling the DAN! doc, I tried a new gf bread I noticed in the freezer section: Udi’s gf white sandwich bread. It was the best gf bread I’d ever had. When talking to the DAN! doc, she recommended Udi’s to me as well. And the best thing was that shortly after that, the kids and I went to Jason’s Deli, only to discover that they now offered gluten free bread as an option, and it was Udi’s! But it was the whole grain Udi’s, which is even better than the white bread! AND they sold it by the loaf at Jason’s too, and it was bigger loaves with bigger slices (gf bread is usually small with small slices, because it lacks that gluten that makes it spongy and holds it together). So, Yea! We can eat gfcf at Jason’s Deli!!!!! (and buy Udi’s to make sandwiches at home!). God is good!

So, the two weeks were passing, during which time I was gfcf (and enjoying Udi’s bread!), starting the probiotics, starting the D3 when it arrived, and waiting. During this waiting time, the ladies at church threw Iago a baby shower, which was wonderful!

The following Sunday I hadn’t seen much change, so I spoke to S., the pastor’s wife, asking her to pray for Iago while we were away in Virginia. She not only said she would, but she took us back in the sanctuary after the service and fellowship lunch and held and prayed for Iago then and there. She prayed for healing and against generational curses, and for Iago’s future, that she comes to know the Lord early. By the time she was done praying, Iago was smiling the biggest most beautiful smiles at her! She was “all there!” She was smiling at S., and at some little girls who came in--just totally all there! Habeeb came in during this time of smiles and connecting, and knew it was special too. I have no doubts that God healed Iago there of autism spectrummy stuff, and about a week later, Habeeb made a similar comment. Iago has been “with” us since that afternoon, thanks be to God! God really IS good!

After that Iago’s poops also began to improve. They finally turned yellow, and developed curds, and the slimy mucus is 99% gone (baby poop is usually still somewhat “runny”). It appears Iago’s gut was doing much better since the prayer as well! Now, at 10 weeks old, Iago has beautiful poop, unless I eat something blatantly not gfcf (Fuddrucker’s hamburgers or BW3’s hot wings, for example). When I cheat, she is especially spewy again and the slime returns for a day or two.

Last Friday I received a phone call from the base doctor, who had ordered the stool labs. She had some news I found especially fascinating, although the doc didn’t seem to think much of it. Iago’s labs had all come back negative (no problems found) except for one. That one lab indicated Iago had undigested carbs in her poop. The doc didn’t seem terribly struck by that, but I was! I knew that Iago’s poop was better since I went gfcf. Gluten is the part of wheat, rye, and barley (all carbs!) that many folks can’t digest, and which can then cause a whole host of major health and gut issues. Iago must be one of those people! When I was eating gluten, she was too since she nurses, and the gluten wasn’t digesting and was messing up her gut, causing inflammation, which causes the slime and mucus she was pooping. After I went gfcf, her poops changed from slimy, mucusy, dark snotty nastiness to that yellow, curdy, cottage cheesy poop breastfed babies are supposed to have. Yea!

The question still remains: Is Iago a true “celiac” (gluten intolerant) or is this something she will “outgrow?” To get an official celiac diagnosis, you have to do an intestinal biopsy to confirm the intestinal damage caused by gluten, which also means you need to be consuming gluten (and thus damaging your intestines) at the time the biopsy is take. And we’re not going there. Why do intentional damage to undergo an invasive procedure to confirm what we already know, that Iago and gluten do NOT mix? Besides, I already have Jman gfcf, and SB3 is cf, so it’s not like this is anything terribly new to us! It’s just that now Iago is gfcf, too, and therefore I am also gfcf, at least for as long as she’s still nursing.

So, I have terrible wonderful news: Iago is likely a Silly Yak! That’s terrible in that it’s a bit of a pain, especially trying to eat out or at pot lucks and pizza parties. It’s wonderful in that we figured this out SO early! It’s terrible in that we figured it out so early because of all of out experience with Jman (meaning I wish Jman never had these problems). It’s wonderful in that maybe the base pediatrician will learn something that will help some other kid/family (that would be VERY wonderful!). It’s terrible in that I have to be gfcf too now, but it’s wonderful in that we continue to find some FABULOUS gfcf products (we had the BEST gfcf pancakes EVER the other day--using a new gfcf Bisquick mix, of all things! yummy!!). And most wonderful of all was watching little Iago turn on and light up as the pastor’s wife was holding her and praying for her. God is good, all the time! And that is the most wonderfulest news of all!

The Big Pool and some observations

Jman got his "big pool." Do you know how hard it is to find a "big pool" (of the "easy set" variety) on the Friday of Fourth of July weekend? It took us til Saturday afternoon/evening to get on and start setting it up, but it was up and available for Sunday, and Jman LIVED in that pool most of that day (and got nice and pink, and oh boy did his freckles POP out!).


After having the "big pool" for just a few days, Habeeb and I have noticed that Jman NEEDS a "big pool." One of the biggest improvements we've seen is in his language and communication, as well as in his general demeanor. For example, Jman came in from swimming yesterday afternoon, and said to me, "Mom James." I answered, and asked him if he'd had fun swimming. He replied, "That was funny!" (meaning "That was fun"), and then promptly followed it up with, "Cleaned up." He was wanting me to help him get the wet clothes off (which he can do himself) and help him get cleaned up (quick shower) before we all got ready to go to a baseball game for Sly's birthday. And I must add that even getting him 'cleaned up' was an easy process (it's never fun trying to shampoo an autistic kid that doesn't like his hair being washed, or cut, or combed, or touched, or . . . ).

Another language highlight occurred yesterday when he wanted me to put in the passcode so he could watch youtube videos on the iPod. Instead of "Try again" or "iPOD!" or "YouTUBE!" or one of his other 'demanding' requests, he laid the iPod down on the counter near me, pointed to it, and said, "Locked." Unfortunately for him, I still did not 'unlock' the iPod for him. And yet, he didn't melt down. He can still manage to listen to music on the iPod with it "locked," and that's what he did instead. Hmm.

There have been other "language" moments which I can't honestly remember at the moment, but there was a fabulous moment a couple days ago involving Jman's ability to deal with frustration and disappointment (something that has been a BIG problem for a while). Jman has desperately wanted to go ice skating recently, and I promised him Habeeb would take him when he was home next time. Well, a couple days ago, Habeeb, Sly, and Jman finally made it to the ice skating rink in the mall, only to discover that the rink was out of service due to a freon leak--there was NO ice. Habeeb was waiting for Jman's world to come to an end, and was quickly trying to figure out how to get them through this catastrophe with the least scarring. When he tried to get Jman to leave, Jman wouldn't. He wasn't freaking, but wouldn't just leave. Instead, Jman began to walk, around the ice skating rink, completely circumnavigating it. Habeeb and Sly walked with him. Jman checked out the iceless rink from the whole circumference, studying and confirming in his own mind that yes, there was NO ice, and there would be NO ice skating, much to his great disappointment. And then Jman said, "Bowling."

Habeeb was floored. Not only did Jman NOT meltdown, but he studied the situation, and came up with his own suggested alternative of another fun thing they could do in the face of disappointment. And you can bet, Habeeb was more than happy to take the boys bowling after that amazing processing of Jman's! When he came home and shared the story with me, I just looked at him and reiterated, "Jman NEEDS a big pool!" And Habeeb agreed.

In case anyone is wondering what about a big pool is possibly helping Jman, I have three main theories. First is simply the increased physical activity (exercise). Second is the sunshine and all the biochemistry that goes along with being outside in the sunshine (think Vitamin D and its role in many biochemical processes, including mood stabilization). And third is sensory, primarily the "proprioceptive" input from the water pressure, but also vestibular input from motion. I'm sure that there are other 'advantages' as well (fresh air vs recirculated A/C, for example). But the big three for Jman, I'm confident, are more about increased physical activity, sunshine, and proprioceptive input. Those are ALL "calming" to the physio-neurological system, and are making him more "available."

And just for fun, here's a few extra photos of the rest of the boys (btw, we love having an underwater camera!):

"BIG POOL"

So, Jman has wanted a pool forever. Earlier this summer we talked about getting a large above ground pool, but given logistical issues decided against it at the time. We did get a large inflatable kiddie pool, which Jman still enjoyed last year, but that just wasn't sufficient for him this year. He did get in it, but not without re-asking for a "big pool."

Well, we've decided to go ahead and get one of the "bag pools" (as I call them) afterall for the rest of the summer. Sly said he'll keep it clean (because I won't be able to) and it'll be great for the boys. So, when Jman recently began pestering me for a "big pool" again, I told him we'd get one the next time daddy was home.

Today he was at it again, and I walked over to the calendar and showed him today and which day we were gonna get the pool. I wrote on that date "pool" and of course Jman started to freak out for some reason. Fair enough, so I erased "pool." He then took the pencil and I thought would scratch out where I erased, but much to my surprise and delight he instead began writing. First a "P" then above that he wrote (in all caps) "BIG." Then he dropped back down to the P and wrote "OOL." Then he underlined "POOL" and then "BIG," and then said, "Big pool!"

You got it, buddy Jman--we'll get a "big pool" this time, but NOT until daddy is home again to set it up for us!
Pretty awesome communicating for a severely language impaired kiddo!

Bowling

This summer Jman joined a local "special needs" bowling league for the summer. The kids meet every Saturday in June and July at one of the local bowling alleys and can bowl two games. Some kids have autism (or some version thereof) and others have other "special needs." Jman has bowled with kids born with spina bifida and wearing leg braces, plus a young man with Down Syndrome, and another young man with autism, for example. Shoes are included but not required (like I said, it's "special needs friendly.") The bowlers also each received a cool red T-shirt they can wear if they want.

The first week (June 5), I wasn't too sure how Jman would handle things. I took him to "preview" the alley a couple evenings before, just so it wouldn't be ALL new to him. I knew Saturday morning would be overwhelming enough with registration and crowds and expectations. Anyway, that first Saturday was kind of tough on Jman, but with a LOT of support, he DID manage to stay and bowl one whole game (except for the second ball of frame one). He ended up not wearing the bowling shoes that first game, and I didn't even offer him the T-shirt until after we left. However, when we did make it back out to the truck I offered him the shirt and he IMMEDIATELY put it on over the shirt he was wearing. That was how I knew that he himself considered the morning a success and wanted to come back again, despite the fact that while we were there, he was overwhelmed, "sad," and was more than ready to leave after one game.

So, we went back the next Saturday, and he was all for it that week! He happily wore his bowling T-shirt, and actually gave the ball good forward motion the second week! (Another "new" thing the first week was that he didn't have a "ramp" to send the ball down--there simply weren't enough to go around, and more physically challenged and/or little bitty kids and/or wheelchairs had dibs, of course!). He also happily wore his bowling shoes week 2. Jman so enjoyed himself during week 2 that I even went so far as to try to get a picture or two, and he was actually happy to smile for photos! WOW! So all these photos of a happy Jman are week 2 photos (except the last one, which was week 3). Enjoy! :)

When one of the dads of a kid on his lane pulled out his iPod touch and started showing Jman silly apps on it about frame 7, I didn't know whether to be grateful that he was reaching out and trying to connect with Jman or whether to scream "NOOOOO! No SCREENS!!!!!" But, I restrained myself, and Jman enjoyed some screen time between his turns. I thought for sure Jman would want to stay for game two if it meant more silly iPod time, but he didn't. He still was ready to leave after one game, as indicated by his removing his bowling shoes and putting his own shoes back on. Worked for me, and we headed towards home with a much more relaxed Jman than after week one.

Last Saturday was week three. The dad with the iPod wasn't there (nice guy, but I must admit I was kind of relieved! I didn't want the iPod expectation the whole time we were there!). Instead Jman had two new people to bowl with. He dealt with that change up just fine, but wasn't interested in switching to a different lane. The folks in charge were cool with that, and Jman stuck to his lane 14. The only real challenge was that this week there was no one bowling on lane 15 on, so Jman kept having fun "making laps." At least he was leaving because it was "fun" instead of like the first week when he was "escaping" because he was overwhelmed and frustrated. Still, it got old! Otherwise, it was a GREAT morning. Jman not only had fun, but stayed for BOTH games! AND he started both games with a STRIKE! He also got a pair of spares in both games, and personal best scores, breaking 100 both games! Not bad, considering we weren't sure this was going to work out AT ALL when we signed up! Over the course of the three weeks, Jman went from 86 (of which 85 points were his) to 79 (but a much happier 79) to 109 (wow!) to 116 (super wow!!!).

Today when we were out and about, passing through the general neighborhood of the bowling alley, Jman piped up from his seat, "Bowling." Sorry, buddy, not today, but we will bowl again next week! (And this is Jman with his new babysitter/buddy, who will be taking over bowling when I'm laid up in another couple weeks for most of July! He's terrific!)

Jman Art: Harold's Rocket Ship (and the art of conversation!)

Just a little while ago I walked into Jman's room while he was in the midst of coloring in this drawing of his. I commented on the amazingly cool train layout he had going around his room and out into the hallway, and then simply stopped to watch him color for a bit.

And that's when the beautiful stuff happened.

Like I said, instead of talking at him, or trying to get him to respond, or anything, I just stopped and watched him color. And that gave him time and space.

And he said to me, as he continued coloring, "Black." (He was coloring outer space, but with a blue crayon. My interpretation: He needed a black crayon, but was making do with what was left in the box. It was both an observation and a sort of request, though he clearly was NOT expecting me to hand him a black crayon because he just kept on working with what he had.)

I answered that I guess we needed to buy some new crayons.

Then he said, "Rocket ship." (He paused in his coloring just long enough to point at the rocket as he spoke, and then promptly resumed filling in outer space again. Yep, that's a rocket ship, all right.)

Then he said, "Purple." (Quickly after the rocket ship comment, he pointed to a small area of outer space where he had apparently initially begun coloring with a dark purple. In addition, he may have been letting me know where the picture came from, in case I didn't already recognize it.)

I observed that he was drawing a picture from a nearby book on his bed, "Harold's Trip to the Sky" by Crockett Johnson. Remember the Harold and the Purple Crayon books? Fabulous books! And Jman has been enjoying them again recently. And drawing lots of pictures from them. And coloring in the pictures in the books as well. Great books.

Right after my comment, Jman piped up again with, "White baby." (He pointed at his drawing of Harold on the rocket ship. Yep, Harold was white, and he was a 'baby.' Thus, in this color dominated conversation, Jman so eloquently elaborated and described more of his drawing for me!).

I commented, "Yep, that's Harold!" And Jman continued finishing the coloring in of outer space.

Is that an AMAZING conversation, or what? I mean, seriously, for a man of few words, such as Jman, that was QUITE the conversation! And HE started it! And kept going with it! And it all made perfect SENSE! No scripting. Nice turn taking. On topic. Great elaboration. Mutually interesting to us both. Relevant. Sharing. Not trying to "get" anything from anyone. I was not trying to get words or attention. He wasn't trying to get anything from me either, just sharing about what he was working on, while I was seeming interested by standing there just watching for a few moments (and I genuinely WAS interested!). It's totally the kind of conversation ANY kid might have with their mom when mom walks in and sees the kid is drawing a picture--the same KIND of conversation, but with a LOT fewer words, of course!

Anyway, I was just fascinated. What a cool thing. It also reminded me of several other things he took the time to show me today, mostly when I walked in to see what he was doing, but once when he actually brought something to me just to show me. I guess he just wanted me to see what he'd made. Way cool.

So, Jman art--both his drawing AND his art of conversation! Who'd've thunk? :) I'm so glad I didn't go in and start asking him questions or start commenting myself on what he was doing! Less is more. Just give Jman time and space to think, and he can blow you away! I love that boy!

Creating a "Reason" (that's reasonable, isn't it?)

So, back to schools discussion (humor me!).  Last post I talked about how psychologists a hundred and fifty years ago or so were trying to establish themselves as a legitimate "science," but in order to do so they had to generate something "scientifically experimentable.". The way they figured out how to do that was to eliminate experience and prior knowledge and personal relevance (and thus personhood, when you think about it), and teach and test people on something no one could possibly know or even have a use for, NONsense.  The discovery was that people have a hard time learning nonsense because it's, well, nonsense, and WHO in their right mind wants to work hard at learning meaningless disconnected useless information simply for the sake of learning it?  No one! (no one in their right mind!)

Enter the behavioralists!  They gave people (starting with animals) a "reason" to learn the nonsense that they would otherwise NOT spend time learning (to only forget/brain dump quickly after "learning" it).  They gave "reinforcers"--postive reinforcers (such as cheese at the end of a maze) for right answers to encourage repeats of that behavior (doing/choosing the "right" but non-relevant to anything otherwise personally meaningful answer), and/or negative reinforcers to discourage repeats of other behaviors (doing/choosing the "wrong" answer, or perhaps refusing to participate in the first place because there was no reason to, except for the artificially created reason/reinforcer).

Is any of this sounding familiar to anyone?  Not necessarily the details, but where this is heading?  I'm out of time for this installment, but I foresee part 3 and maybe a part 4 (depending on time blocks available to me).  Oh, and please forgive the typos in these posts--again, with my time availability, typos are low on my list of priorities!  

Regurgitating and Brain Dumping

I want to talk about school for a few minutes.  Do you remember back when you were in school wondering why on earth you had to learn some of the things "they" said you had to learn?  The particular "irrelevant" subject certainly varied from kid to kid, but there was almost certainly some class that you had to take to meet "graduation requirements" that just seemed to have no relevance to your life at all.

Even more so, I bet there were classes, including perhaps many you did agree might have usefulness down the road, but especially the boring/irrelevant/meaningless to you classes, where you spent a lot of time "cramming" for the test so you could regurgitate the correct answers and get that good grade, or make the honor roll, or keep yourself from being grounded.  And odds are you brain dumped most of what you "learned" as soon as the test (or the class) was over and the "final results" were in.  

I could give you many personal examples from my own schooling, but I really doubt that's necessary.  I'm sure you've already thought of your own.  

So, what's up with that, anyway?  Do you remember how stupid itnall seemed back then?  Do you remember griping with your fellow classmates, wondering when you would ever use any of this disjointed information you had to pass tests on?  

Okay, now here's another question:  Have you actually used or needed a lot of that regurgitated and brain dumped information, or was it really just something to "test" you on and keep you occupied with at the time?  I bet you say "yes and no."  Some of the info you probably did need or want to know later and some of it you probably didn't.  

So, one more question:  When you DID need to know that "something" down the road, how hard was it to learn and actually understand and even remember it (instead of forgetting it again) when it finally had personal relevance to you (beyond the relevance of getting the grade)? Is that not when the "real" learning finally happened?

Okay, so, if the "real" learning happened when you had a personal, meaningful interest in the subject and it had personal relevance to your life (perhaps of necessity or perhaps as a hobby), and if that learning actually came easier and lasted longer than the disected "regurgitate and brain dump" learning for the test/grade/credit, why do we spend so much time and effort learning disected information in chopped up classes and segments that we are just going to brain dump anyway once the class is passed?  And if this is something we already know intuitively (as we did when we were cramming and regurgitating and brain dumping and wondering why when we were in school), why do our schools not only still "teach" that way, but do it even more so than they did when we were in class?

Guess what!  I found out why!  There IS a reason for the insanity!

Back in the 1800's, psychology was trying to prove itself as a legitimate "science.". But there was one BIG problem.  To be a respected "science," you had to be able to conduct experiments, and you had to have both an "experimental group" and a "control group" and a testable "variable."  (surely you can still recite the steps of the scientific method!  If not, then how do you judge all the "science" in the news today?)  But psychology with regard to human learning had some big challenges, because everybody's life experiences were different, and what they had already learned was different, and how they learned it was different, and why they learned it was different.  The wanna-be psycho-scientists couldn't create valid and repeatable experiments because they couldn't create "equal" or "comparable" experimental and contorl groups, and they couldn't find unique variables to test the groups' ability to learn because everyone already knew different stuff and had different learning backgrounds already.  That's just how life is!

So they had a real problem on their hands.  They needed to invent a way to create testable and compare-able groups, and they couldn't find a way to do it.  Until someone solved the problem--you had to detach the "learning" from real life!  You couldn't scientifically test and compare how people learned in real life (which people had already "known" for thousands of years--you learn from other people, and you learn what is interesting and relevant).  Instead, you had to scientifically test and compare how people learned NOT in real life.  Which means you had to create "fake" learning.  Detached learning.  Disembodied, disconnected, irrelevant learning.  Irrelevant meant it had to have no possible meaning to anyone's real (real--relevant).  What the testees had to be tested on, what they had to learn, had to be irelevant, it had to make no sense, it had to be NONsense.  

And that's the magical solution that a German psych named Hermann Ebbinghaus came up with in the late 1800's.  In order to study how people learn and remember (and later how they forget), he devised a list os NONsense syllables for people to memorize (and regurgitate).  Because the syllables were not part of any known language, they could have no relevance to anyone's previous life and learning, and therefore they not only made for a great test variable, but they also created by default acceptable experiment and control groups.  Problem solved!

And guess what his experiments showed?  Exactly what everyone already knew, of course.  Learning nonsense, information with no relevance to ones life experience or interests, takes a lot of effort, precisely because it has no relevance to the learner.  Subsequently, he "discovered" that we quite quickly and easily brain dump all this irrelevant nonsense because it is, well, irrelevant.  What we learn and remember is information and skills we are interested in and which have relevance.  (It has a lot to do with "short term memory" vs "long term memory," btw, but I'm already writing a book here!)

So. if the discovery was the confirmation that we learn and remember what we are interested in and what has relevance to our lives, and that we only "memorize, regurgitaite, and brain dump" the info that we don't have experience with or interest in learning (beyong learning for the grade), why on earth do we run our schools (and our autism intervention programs, I might add) precisely that way?  I can answer that question too, now, but I really ought to stop for now and get on with "real life" again this morning!  Perhaps I'll find another large uninterrupted block of time for "part 2" if anyone else finds this relevant and interesting!  (I sure do, and not because I have to pass a test for "them," whoever "they" are!)           

Jman's Words, update #2--"progress"

Last week I blogged some about several obstacles we/Jman has had with using his ProLoQuo2Go and/or the iPod in general. Those obstacles still stand, and I could add one more I think I left out: He likes to "chew" on the iPods (and charging plugs/cords and headphone cords). Spit and electronics just don't mix real well. Here's a tip for anyone out there who has had the unpleasant experience of "wet electronics:" After you dry the outside as well as you can, close the electronic device up in a sealed jar or container of DRY (uncooked) rice. The dry rice absorbs the internal moisture that you couldn't get to with a towel. Unless something has short circuited inside (keep the power off to avoid that!), there's a very good chance your electronic device will survive the wet event just fine. (Yes, we've done this with iPod and cell phones multiple times, thanks to "belows in headwork" from both Sly and Jman!)

Now, on to "progress" updates from Jman with regards to his "words" on the ProLoQuo2Go. Jman still primarily uses the ProLoQuo2Go for "instrumental" or "means-to-an-end" communication, such as making requests ("Let's eat dinners." "Let's go to McDonald's." "I want to use the computer.") The "progress" is that he is both using the iPod/P2G to make more 'verbal' requests such as those, AND he is also making more 'verbal' requests such as those WITHOUT using the iPod/P2G. In other words, he is 'learning' and 'practicing' the language/statements/words on the P2G, and transferring them into his head. He is then better able to access those words/phrases out of his own head even if he doesn't have the P2G available at the time. It IS still very scripted, but at the same time it is reducing a 'frustration' factor from knowing what he wants but not being able to find the words in his head and get them out of his mouth. So, I still consider that progress.

Now, with regards to "experience sharing communication," or communicating with others just for sharing perspectives or letting each other know what the other is thinking (rather than trying to 'get' something from the other, such as food or the computer), Jman has made some noticeable progress as well, although the quantity is much less. In particular, P2G comes pre-programmed with a "feelings" section. Jman can select the "feelings" page, and from there contruct the simple sentence "I feel ______." His most commonly shared feelings have been 'hungry' and 'thirsty.' He will also tell us he feels 'scared' or 'sad.' But his newest shared feeling, and one that has come 100% from his own personal studying of the pre-programmed options on ProLoQuo2Go has been "FRUSTRATED!" Yep, he can now tell us (sometimes) when he feels "FRUSTRATED!" And when he tells us he's frustrated, he clearly IS frustrated. He apparently put together his internal feeling with the symbolstix icon/frustrated face, and learned the word from listening to it repeatedly on the P2G. So, I personally think that's pretty awesome. Not only is he recognizing and naming his own internal state, but he's found a way to share that internal state with us in ways other than just looking and acting frustrated. That means there's some improved levels of self-awareness and intersubjectivity going on up there in that head of his, despite his many obstacles.

Jman has also added other words or phrases to his vocabulary/communication (both spoken and using P2G) as a result of playing around with the P2G on his own. Some we get tired of hearing ("youtube" or "What do you watch on TV?" come to mind!). Some are funny ("home chat" or "community chat" or "school chat"--we wonder who he's doing all this 'chatting' with!). Some are useful or make sense ("check this out"). Some are just plain weird ("Today at school, I . . . " and he of course never finishes the sentence because it has no meaning/context for him--it's just a pre-programmed phrase/sound he can make the P2G say, and I haven't bothered to take it off).

Jman has sometimes used other 'visual' ways of trying to communicate something to us if it's not available in his head or on the P2G. For example, he and I were leaving a store the other day, and he saw a restaurant and decided he wanted to us to go there. He pointed at it, and then spelled out to me: "R-Y-A-N-S" (the name of the restaurant). I told him how to SAY the word, and after a few tries, he could copy "Ryan's" (he clearly has auditory processing issues, because it DOES take him sometimes several tries PLUS watching my mouth for him to really say a word correctly that he has misheard/misprocessed). Later I was able to add an icon to his P2G for Ryan's, which gives him not only the option on the P2G, but more chances at practicing hearing the word pronounced over and over, without me having to pronounce it over and over (and over) myself. It's just terrific to be able to add words of HIS choosing to his P2G, thus giving him the chance for further practice without driving mom completely insane in the process! These are words that he clearly DOES want to communicate with, and this facilitates his own expansion of available verbal language.

Another interesting thing with regards to Jman playing around with the ProLoQuo2Go is that he is also teaching himself some spelling. For example, he will be trying to program in words for himself, using symbols included with the programming or using pictures/images that have been uploaded to the iPod or downloaded from the internet. He'll know what he wants to say, and he'll find the image he wants to use, but then he'll come to me for spelling help when he gets stuck. He is a very visual kind of reader, tending to spell by sight memorization rather than by 'sounding it out.' When he types into the P2G an incorrect spelling, the device doesn't say the correct word. He'll then come to me to have me tell him how to spell it correctly so the device will say the words he means for it to say. I think that's kind of neat. Sometimes he knows that he can't remember how to spell a word in it's entirety, and then he'll come to me sooner. He really seems to have fun playing around with adding and/or rearranging and/or deleting and then replacing words on his P2G, and it does seem to have an impact on his generally bizarre way of learning and processing and using language (both verbally, orally, auditorially, and written, and for both instrumental and experience sharing purposes).

I wish that I could say that I was seeing miraculous improvement in his experience sharing communication as a result of the P2G, but that's something that comes not as a result of having more words available but rather of having more shared experiences together and a better relationship overall. Thus the P2G is NO replacement for RDI/life, but it is a potential enhancement. We have much further to go in that arena, and hope to perhaps find a personal guide for US when we move in the not too distant future.

Intersubjectivity and pill bottles

Several of my cyberfriends have written some fantastic posts on the concept of Intersubjectivity. Rather than reproduce their awesome work, check out these posts by Tammy, Niffercoo, Penny, and Kathy. For a very quick synopsis, I’ll just say that each person has a Subjective or personal view of something, and when we share our personal subjective views with each other (influencing our own and each other’s views as a result), that is called INTERsubjectivity.

For a quick word picture, intersubjectivity like an INTERstate: Interstates are roads that connect different states, making travel possible across state boundaries, vs an INTRAstate which would be entirely contained within the boundaries of one state, precluding travel across state lines. Similarly, Intersubjectivity allows for the sharing of personal subjective perspectives and experiences between multiple people, whereas intrasubjectivity (is there such a word? Hmmm.) would be keeping your perspective to yourself and NOT connecting or transmitting that idea to or with others (such as not commenting on my post). Clear as mud, right? Read my friends’ posts—they explain it better than I do!

What I really wanted to do was to share with you an example of the highly sophisticated Intersubjective development of a typical 19 month old—you guessed it—SB3. Yesterday afternoon, he had moved a chair over to the kitchen counter and was busy stacking pill and vitamin bottles (who said you need to spend money on blocks? Haha!). SB3 stacked them four bottles high, which was about as high as he could possibly reach. Then he turned and smiled at me, sharing with me his personal subjective thoughts—that he was proud of his good work--and checking out mine, making sure that I was as aware and proud of his accomplishment as he himself was (thus, he was being intersubjective).

Just a few minutes later, Habeeb got home from work. SB3 was still playing with the bottles. They’d fallen over and he was restacking them. He stopped to acknowledge Habeeb’s arrival, but then went right back to his very important work. In a few seconds he had his stack finished, and then the beautiful intersubjective dance began again.

First SB3 turned from his finished stack to smile with great pride at Habeeb, who was likewise enthralled with the architecture. Then, even though Habeeb was ‘with’ SB3 in the dance, SB3 quickly pointed at his stack of bottles as well, furthering highlighting his pride and joy. Then SB3 turned and looked at me again as well, still grinning from ear to ear and with a happy little chuckle to further highlight his great satisfaction and pride, making sure that I was in on the experience too, sharing his perspective and checking out mine (which he found matched his quite well—the proud momma and the proud boy!). I of course already knew that he was a good pill bottle stacker from moments before, but now SB3 wanted to share with me that daddy now knew it too, and that made it even bigger and better than before! SB3, even at just 19 months old, is already becoming a master of Intersubjectivity!

For some reason (or reasons), that development of Intersubjectivity breaks down somewhere early along the way for our kids on the autism spectrum. In fact, it’s more that lack of intersubjectivity that is “autism” instead of a set of specific and commonly listed behaviors (such as lack of eye contact or lining things up or having very short attention spans, all of which are behaviors common in autism, but far from universal in autism, whereas a lack of intersubjectivity is universal and is the contributing factor to all the varied behavioral symptoms, whether there is 'eye contact' or not).

The good news is that even though Intersubjectivity breaks down or fails to develop in the first place in autism, it IS repairable and can then continue to develop to higher levels and complexities, just as the brain continues to grow and develop throughout our lives. Approaches like RDI (Relationship Development Intervention) focus on helping the parents create opportunities for reestablishing the development of Intersubjectivity through repairing and working through the Guided Participation Relationship.

Most often that begins with re-establishing the first level of Intersubjectivity, a simple me-and-you-together or a we-go (as opposed to an ego), such as is seen in a first game of peek-a-boo with an infant just a few months old. By about a year old, infants have progressed to the second level of Intersubjectivity, often referred to as the beginnings of “joint attention,” where the child and the adult can both share their reactions with each other about some third and ‘outside’ object or event, such as the child pointing at a plane passing overhead to make sure mom sees it too. The child is aware that what he sees isn’t necessarily what mom sees, and that mom’s subjective perspective (whether she likes something or doesn’t) may not be the same as his own. Notice, the key is that both parties are sharing with each other their own personal subjective experiences and perspectives. A child with autism can be taught to point at something, or to look at something someone else points at, but that does NOT mean that the child is aware of and considering the other person's personal subjective perspective or feelings about the object pointed at. Following a point is a skill. Sharing perspectives the key to Intersubjectivity.

In SB3’s case, he was clearly demonstrating age appropriate levels of Intersubjectivity, making every effort to share his perspectives and experiences with us, making sure we understood where he was coming from, and making sure our personal perspectives and experiences made sense to him as well (for example, we could have been proud of his success, or angry that he was up at the counter again, or worried that he was playing with pill bottles—many possible reactions, any of which he could have understood, even if he didn’t agree with them himself—it just so happened we were proud and impressed with his towering building project too).

Now, if anyone would like to share their own personal intersubjective perspective with me and other readers of the blog, please leave a comment!

Jman's Words, update 1--obstacles

I know it's been a LONG time since I posted anything about Jman and his ProLoQuo2Go. Oh well--such is life!

But it's time for an update of sorts. What with the holidays and some family and health issues, I have not created sufficient opportunity to work very intentionally with Jman on using the P2G. But that does not mean that he has not been using it, and even teaching himself some new language from it, and also developing some 'obstacles' to using the iPod/ProLoQuo2Go as well. I'll try to touch on some of all the obstacles here, and some of his progress in another post. Warning: This is long and wordy!

First, Jman LOVES messing around with "bird" or "Jman's Words." "Bird" because the ProLoQuo2Go icon is an owl. "Jman's Words" because he has HIS iPod and I have MINE, "Mom's Words." Jman would greatly prefer to have "Mom's Words" because "Mom's Words" still has access to the internet and therefore to not only the web browser but also YouTube. He has become a total YouTube junkie. Unfortunately, there are not any good parental controls on the iPod for blocking inappropriate YouTube videos, and there are so many lovely people out there taking kid's favorite characters and movies (such as Thomas or Wall-E) and creating some very NOT kid-friendly videos. We certainly don't want Jman running around echoing some of the lines he hears from some of the Thomas and Wall-E youtube videos he manages to find! Not to mention the fact that too much of even the 'good' videos mess with his brain anyway.

So, we have the two iPods--one WITH internet access and one WITHOUT.

But I must say, that's not entirely accurate. Jman's iPod still DOES have internet/wifi, and Safari, and YouTube. What he does NOT have is the Key Code for logging on to the secure wifi at home. We found that when we restricted the apps for Safari or YouTube, Jman would completely freak out. He KNEW the buttons were supposed to be there. And of course every iPod case/accessory out there shows the icons for Safari and YouTube as well, resulting in him wanting to purchase every case, in the hopes that the buttons on the stickers would work. Sometimes it was funny, and other times it was annoying! So, we decided to leave Safari and YouTube ON his iPod AND leave the wifi turned ON as well, BUT Jman doesn’t have the Key Code to be able to log on to the secure wifi at home. Thus, he doesn’t have internet access at home on HIS iPod, but doesn’t melt down at the missing buttons on his iPod. Instead, he asks me to connect him to the wifi, OR he tries to steal MY iPod from my pocket. Now THAT gets really annoying! But it’s the ‘happy medium’ we have at the moment.

There is one more aspect to the “Jman’s Words” vs “Mom’s Words” issue. Jman HAS figured out how to spy on me when I log on to my iPod with the 4 digit passcode. Then when/if he is able to get his hands on my iPod, he logs himself on and has his beloved YouTube. So, I’m now having to cycle through a series of pass codes, trying to stay one step ahead of him. Again, it’s annoying, but on the other hand, I’m kind of proud of him figuring out how to be that sneaky and successfully pulling it off (more than once, no less!).

Well, aside from the general iPod/YouTube/Safari obstacles, we also have Jman using his iPod to listen to music. At first we put on some Jman favorites, but they quickly became stimmy obstacles interfering with not only communication and interaction, but also LIFE. So, we removed some of the ‘cool’ albums we had initially installed on there, including Garfield (the comic) and Bugs On Broadway (as in Looney Tunes). We also never put any of his VeggieTales albums on there, OR any of the Sing The Word albums from Sonlight Curriculum (Bible verses set to song, which he has stimmed on for years). Instead we put only instrumental music on his iPod, so he couldn’t stim on the lyrics like he’d been doing. He has a definite favorite with, of course, “Linus and Lucy” (as in The Peanuts/Charlie Brown) as performed by George Winston (solo piano). The album is fabulous, and he listens to IT over and over again, with a couple favorite songs in particular. But being just music instead of lyrics, it really does fade into the background most of the time and doesn’t interfere with his ability to communicate or engage with us, even while his music is on (most of the time).

About a week ago, though, Jman did something totally new: He sat down at the piano, with his iPod playing the end of a particular favorite Charlie Brown song, and tried to imitate what he was hearing on the piano! Was he successful? Well, not exactly. He was successful enough that we could clearly recognize what he was TRYING to do, even though he wasn’t exactly pulling it off.

Also particularly interesting were the facts that, 1) He didn’t ONLY try to imitate the part he was listening too. He also played around on the keyboard in general, alternating between trying to learn the passage he wanted to imitate and just exploring the piano in general; and 2) he did NOT freak out when Habeeb was recording him on video at one point (though he did later delete the video and we haven’t been able to recover it yet! Darn!).

One other aspect about the music on the iPod before I move on. We later added an album that includes acapella vocals (only voices, no musical instruments) with some fabulous harmonies. Jman has spent a lot of time ‘studying’ this music, listening to it intently. He seems fascinated by the complex vocal harmonies he hears. Kind of funny—we’ve given him albums with NO vocals and albums with ONLY vocals, but the albums with both instruments and vocals create huge stimmy obstacles. There’s got to be something profound about that observation with regards to auditory processing or something, but I don’t know what it is exactly.  In any case, the music has become not so much of an obstacle with his current selections, and yet he still enjoys listening.


The next obstacles revolve more around ProLoQuo2Go in specific rather than the iPod in general. First is the fact that when Jman is really upset about something (such as YouTube not working sometimes), he will express his displeasure by deleting ProLoQuo2Go. I know I’ve mentioned that before. I still wish there was a way to prevent him from deleting that app. He goes through phases of that, not deleting it for a couple weeks, and then deleting it 4 times in a single day. Sometimes he’ll be upset (with me, because I won’t log him on to YouTube, or whatever he’s upset about at the time), he’ll delete ProLoQuo2Go , and then immediately hand me the iPod and say, “Oh No! Where’s Bird?!?” When he does THAT, I’ll usually say, “Bird’s GONE. All done!” and NOT reinstall it right away. At that point, he’s wordless/birdless until I decide to go ahead and reinstall for him, which may not be until the next day or later, it just depends. Such is life. When he’s being THAT deliberate, there are consequences, and Mom not fixing it right away is certainly one very natural consequence!

At other times, Jman will just be stimming with the buttons on P2G. For example, he’ll have it say a single word over and over and over again just because he thinks it sounds hysterically funny. Sly thought he’d broken the iPod, but Jman just had it saying “our” about 75 times in a row, just to hear the funny sound. Jman will also push every button in a category just to hear the iPod say the words, sometimes several times in a row. Even funnier, Jman has of course memorized the sequences and will say them himself just for fun sometimes.

Now, I know what many folks out there must be thinking—“That’s SO bad! That’s so not constructive! You shouldn’t let him do that! He should be using this for functional communication, not for stimming! Stimming, after all, is BAD! You’ve even been talking about stopping bad stims in this very post! Why would you let him DO that?????”

Well, because he’s learning from it. Seriously. Yeah, he’s playing, and stimming, and not being ‘functional’ or ‘communicative’ when he does that. But on the other hand, show me the child learning language that doesn’t play around with sounds and words, stringing silly stuff together and driving those around him absolutely batty when they keep saying the same thing over and over again! Jman is doing something kind of like that. Yes, it’s annoying. Yes, sometimes I DO stop him, because I simply don’t want to hear it anymore. But, for the most part, he’s actually organizing some of these words in his head, and surprisingly enough they’ll pop up in real ‘functional’ communication later on. But that’s getting into the next post. I’m still talking about obstacles.

Another Jman P2G obstacle is when he edits the vocabulary installed on his iPod. He does this regularly. Sometimes it’s just playing, sometimes stimming, and sometimes it creates problems, like when he deletes categories and wants them fixed back again. It’s a minor obstacle. Usually I can restore to a previous backup on his iPod, but sometimes I have to hook up to the wifi and actually reinstall a ‘master’ backup of vocabulary for him. The main problems with that are 1) the general inconvenience, and 2) if I forget to have his iPod ‘forget’ the Key Code for the wifi, he then disappears with his iPod for extended periods and inhales YouTube videos until I find him and get him offline again. What a stinker!

Well, I expect I’ve bored you to tears with some of our iPod and ProLoQuo2Go obstacles. I could sit here and think of others, but these are the biggies, though there IS one more that must be shared: Jman broke the screen (glass) on his first iPod somehow (probably when he was frustrated at not having YouTube!). Fortunately, when we bought his iPod, we bought with it a 2 year replacement contract, including replacement due to accidental damage for whatever reason (such as autistic boys breaking the glass, for example). So, we sent it back for the full refund and then ordered him a new iPod. And yes, we bought the replacement contract for the new iPod as well! Hopefully, though, this 2nd iPod will last longer than his first!

Same but Different

Folks on the autism spectrum have difficulty with changes. Because they are not very good at reading other people's perspectives or intentions, they are at a great disadvantage at dealing with differences or changes when they happen. Most of us will look around to see what others are doing, make a judgement call on why they may be doing that, and will tend to adjust our own behavior and thoughts accordingly, perhaps match what others are doing so as to blend in or maybe occasionally to go against the flow intentionally. But folks on the spectrum don't read others well, and thus don't have that extra info to help them process changes or challenges very well and adjust their actions and thoughts in relation to what others are doing or thinking. As a result, they will usually find one way of doing something, and do it that same way every time, regardless of what everyone else is doing or thinking because they aren't really understanding what everyone else is doing or thinking in the first place, or why. It's safer and more predictable to just do things the same way over and over. That's one of those processing differences for folks on the spectrum that lead to repetitive behaviors such as little kids lining up toy cars instead of playing out various games or scenarios with them.

Thus, I found it especially interesting last night when Jman began communicating to me about wanting some popcorn. Up until now, when using the ProLoQuo2Go, he has punched in a sequence in which he uses a short cut button for the phrase "I want" which takes him to a new page with choices such as a button for "to use the computer" or a category button for "something to eat," which in turn takes him to the "Foods and Drinks" page.

However, last night, Jman did it differently. First, he navigated to "Word Spaces," which includes categories for "Actions" (verbs), "I, You, They, plus" (pronouns), "Describers" (adjectives), etc--basically all the words accessible through their various grammatical parts of speech rather than group by topic (food, clothing, etc).

Jman then selected "I" from the pronouns section. I watched as he began searching for another word, first in Actions, then Describers, then Linkers (conjunctions), then back to Actions. I interrupted him and asked him, "What are you looking for?" He kept browsing, but said (just like P2G says it, of course), "want." So, his first inclination was right--it WAS in Actions, but he just missed it when he looked. I scrolled down with him and pointed it out, and he quickly punched in "want." Then he navigated his way back to the home page and through categories to foods and drinks, where he began searching through Desserts. I figured he was looking for popcorn, and offered that that would be under Snacks, not Desert. He quickly took that advice, jumped over to snacks, and plugged in "popcorn." Thus, he had his complete messgage: "I want popcorn."

Now, there's nothing new about Jman wanting popcorn. What is new is that he found a new way to put the sentence together, finding each word individually instead of relying on cheater buttons. It's also the first time he's ever used a pronoun as an individual word instead of part of a rote phrase. There have been a few times when I was messaging something to him that I have used the pronouns section with him looking on, but only because that was what I needed at the time, rather than having in mind a direct teaching of pronouns. It was also new for him to use a word from the Actions category as well. All together, Jman, despite his autism and despite having one way that works for asking for popcorn, created a different way to ask for the same thing last night, purely for the fun and challenge of doing it differently! That is AWESOME! (Note, I'm tilting my head back and to the left, with a huge smile and two thumbs up, just like the symbolstix icon for 'awesome' on P2G--Jman imitates the poses of the stick figures, and the 'awesome' pose is becoming a family favorite!)

But wait--there's more!

After Jman told me "I want popcorn" the new and different (but still the same words) way, he took his 'same but different' one step further. He cleared out the first message and punched in the sentence starter button for "Let's." Then he punched in the Actions button for "eat." Then he jumped back over to Snacks where he again selected "popcorn." His new same-but-different message: "Let's eat popcorn." That's when it REALLY struck me and reconfirmed that Jman was actually playing with language and finding different ways to get across the same meaning or thought. He wasn't falling back on just the same one rote expression that he always used in the past, "I want popcorn." He wasn't relying on one way of saying that expression via ProLoQuo2Go either, using the starter phrase button "I want." No, Jman was branching out into new territory, discovering adn sharing that there's 'more than one way to skin a cat,' and best of all, he was making that discovering on his own because HE wanted to, and not because someone else was drilling yet another rule into his head.

Last night really got me to considering how the ProLoQuo2Go is helping him to break language up into component words that can be rearranged and reorganized rather than as longer units of stock phrases. When you simply hear someone talking, it's hard to know sometimes where the 'breaks' are, particularly when you have difficulty with the language being spoken (which can be the case for your 'first language' if you have language processing issues or auditory processing issues). When things are written, it's easier to see the breaks in words because there are spaces between words, and other punctuation between sentences and phrases. But with ProLoQuo2Go, there's the added advantage of 'context' associated with the written word, because the little pictures with each word convey additional information that abstract letters of course lack. By fooling around with ProLoQuo2Go (or 'babbling' with it, as I term it), Jman is discovering 'words,' and he's discovering how to put them together to communicate thoughts, and that there's more than one way set of words or one arrangement that you can use to express the same thought. He's got the sound, the letters, the pictures, the organization/categorization of the spaces, and the physical motion of moving through the pages all working together for him to turn his brain on to communication and to make his own effective discoveries about 'same but different.' That is just AMAZING.

bizarro world at the barber shop

Today a bizarre thing happened. Habeeb and Sly were getting their military reg haircuts on base after we all ate lunch. When they were finishing up, Jman walked into the barbershop. He then climbed up into the barber's chair that Habeeb had just vacated. Then he tried to put on the barber's smock, and I helped him snap it in the back. We were all BAFFLED. This kid does NOT do haircuts, and especially not in a hair cutting place! I asked Jman if he wanted a haircut, including programming it into his ProLoQuo2Go, and he said yes. ????!!!!???? The problem was he still had his 'ears' on, and didn't really want to take them off (it'd be awfully hard to cut his hair with hearing protection on!).

Someone else came in for a haircut, and the lady barber, who was being AWESOME with letting Jman do his thing (what a rare and special treat to find someone so good!), asked Jman to move over to the next chair. It took him a couple times of hearing to understand, and then he moved on over. Into another barber's chair. Still amazing.

After another go at taking his 'ears' off, Jman decided to get up and move on out. Habeeb and Sly were done and ready to go. They started to head up the corrider to leave the building, but Jman decided to go back in. He sat down in the 2nd chair again, and put the smock back on. I asked again if he wanted a hair cut, and he said yes. Still not believing it, I pulled the leatherman micra out of my pocket and opened up the scissors. I gave his bangs a few snips, and he was liking it. ???!!!???

Then the lady barber (who was so awesome) suggested we let Jman hold her clippers with them turned on. Like I said, she was awesome! She was completely naturally tuned in to supporting Jman, allowing him freedom, increasing the opportunities for him to learn just enough without challenging him to 'behave' and without overwhelming him. What a rare and special gem!

So, anyway, Jman didn't want to hold the clippers. He wanted me to cut his hair with them. He tried to get me to cut higher toward the top of his head, but that would have been committing us to REALLY giving him a SHORT hair cut. Instead, I just clipped a few more bits from his bangs, leaving him a nice little wedge cut out right in the front. He wanted more, but I again told him the 'ears' would have to come off, and he finally decided he'd had enough hair cutting for one day. He took the smock off, and was ready to leave then.

Habeeb, Sly, and I are still in total SHOCK at Jman's adventures in the barber shop today! We're going to have to find out when the awesome barber lady is working again, and take Jman back and see what he does next time. Who knows--maybe someday the boy will actually get a REAL haircut! Wouldn't that be something?!?!

PS--Jman was having fun looking at his iPod/ProLoQuo2Go which he had turned on under the barber's smock. I suppose it was neat how the lit up screen showed through the smock. He really likes having his 'words' (though he still tries to take my iPod with the youtube not restricted!).

Teamwork!

Today was a lovely day for stringing up Christmas lights! Habeeb was eager to get to work, and I reminded him to include Jman as much as possible. Jman had been asking for the computer (go figure!), but as soon as I told him that dad was going to get down the 'red boxes' he dropped the computer idea in a flash and was out in the garage ready to get the lights down out of the attic.

Habeeb and Jman worked together to get the lights up along the front of the house. Each had a ladder, each had a job, and each kept a "good enough" eye on what the other was up to. SB3 also wanted to get in on the action! He kept trying to climb the ladders, especially "Jman's ladder." I did some quick problem solving and got him an "SB3 ladder"--the step stool. He thought he was big stuff then, just like Habeeb and Brother Jman!

Jman did fantastic 95% of the time he and Habeeb were working. He helped pass up clips to Habeeb (along with a saw and pruning shears for a quick tree limb fix). He moved his ladder when Habeeb moved his. He knew when to run back inside and grab another string of lights without having to be asked. He even kept a bit of a watchful eye on SB3, particularly with regards to the ladders.

Jman did have one major issue, though. He and Habeeb started from the garage corner of the house going towards the middle of the front. When that string was done, Habeeb went to the other corner of the house to again work towards the middle. That's when Jman freaked out. We couldn't figure out what his problem was, but he was seriously freaking out, including flailing and throwing himself on the ground. We weren't sure what his problem was, but I speculated that it might have something to do with switching to the other corner and going in the opposite direction. He did eventually get over it, and got back to being a good helper for Habeeb. When they finished that string and went back to the end of the first strung string, Jman again began to flip out, and that's when we both agreed that yes, it was the transition from one location/direction to the other location/direction that was throwing Jman for a loop.

Now, what we don't know is if it was because he was confused and didn't understand why we were doing what we were doing OR if it was some kind of OCD type thing where even though he may have understood, it just FELT wrong and wigged him out for a while. In either case, he got over his second flail-ex much more quickly than the first, and he and Habeeb finished stringing the roof line. They do still have the front door to string up, and Jman's bedroom, and whatever else Habeeb decides to string up in the house. (Actually, Jman has strung up the hallway bathroom, and is stringing up his bunk bed in lights as I type!)

A ProLoQuo2Go note: While Jman was NOT using the ProLoQuo2Go to communicate during today's festivities, he DID say at one point, "I need help." He had switched roles with Habeeb and was trying to attach a clip to the roof, and was having a bit of difficulty with a particular shingle, and so he told Habeeb he needed help quite calmly. He had a few other P2G-esque moments today as well, but it was mostly means-to-an-end and not experience sharing. Today's most common line (even prior to lights going up) was "Let's go to snow." He loves snow!

A few take home points for anyone doing RDI/Guided Participation with a kid on the spectrum: 1) No one's perfect. There are lots of flaws we make, both us and the kids. Just move on. 2) Think through what you want to do before you try to guide your kid through the activity. Habeeb had a plan for how to string the lights, and he has experience from stringing them in the past. It's much harder to guide your kid when you don't know what you're doing! 3) Don't expect your kid to be excited about an activity just because it excites you. In this case, stringing lights was an activity that really does excite Jman. He'd have been far less interested in helping us do other mundane chores. That doesn't mean you only do things that they find exciting, but do be aware that you may have a more willing apprentice when you have a "mutually meaningful project" rather than a project that one or the other person isn't really into. 4) Whatever your project, make sure the roles of the people are both clearly defined and are 'legitimate' roles. Don't assign a role that is either beneath the other person OR that is overwhelming to the other person. Do assign roles that have legitimate value, that are respectful of the other person as a person, that are in someone's Zone of Proximal Development (ZPD). Remember, work in the ZPD is work that someone can't necessarily do alone but can do with proper guidance. It should be just challenging enough without being too challenging. 5) Slow down. Give the person time to think and respond and solve their own problems.

I need help, and LRE

I have spent the better part of the last two days searching like an obsessed madman trying to find information or message boards or blogs or websites or SOMETHING of other people who are homeschooling spectrum (or other) kids using AAC devices (such as ProLoQuo2Go or any other brand/device), or for information on specifically working on experience sharing communication and social-emotional-cognitive development using AAC devices, and I hate to say that I'm essentially empty handed and frustrated in my search. It seems that pretty much everyone out there using AAC devices with their kids has their kids in school settings for the majority of the day.

A funny thought occurred to me today as I was on my unsuccessful quest to find someone else 'like me.' The law requires that special education students be placed in the "least restrictive environment" (LRE) in which they can learn. Typically, the LRE is considered to be a mainstream inclusive classroom, and the most restrictive environment is home placement, but that's absolutely backwards! The Least Restrictive Environment is the homeschool setting. When a student is plugged into a classroom, even a mainstream classroom, they are very much restricted to interacting for a prescribed period of time in a restricted area of space with a restricted group of 'peers' who are grouped essentially by chronological age rather than abilities or interests or personalities, all while under the prescribed direction of a lone adult or two (if there's an assistant teacher in the classroom). Attendance is compulsory, curriculum is predefined and cookie cutter and in compliance with 'state standards,' and social interaction and individual self-development is extremely curtailed for the sake of 'classroom management.' If that is the 'least restrictive environment,' I'd hate to see what 'more of it' will do to our kids if they pass restrictive laws extending school days and academic years and further narrowing the 'scope and sequence' that kids have to regurgitate on a specific timeline for someone's restrictive standardized test where they mesaure how successfully they produced a bunch of standardized copies of kids. Ugh!!

No, I think the Least Restrictive Environment for anyone's education is the 'home' setting, which is rarely limited to 'staying home.' Students (and teachers!) are free to come and go as opportunities for life and learning permit. They are free to learn within the community at large, using the entire neighborhood as their school campus, or perhaps the entire state, nation, or world if they do much traveling (including cyber field trips as well). They get to interact with the broadest variety of peoples from all ages and developmental levels, from siblings to neighbors to grandparents to all varieties of workers/employees/employers throughout town and wherever they may roam. The students aren't restricted to cookie-cutter curriculums, but rather can pursue interests in depth, learning to develop excellence and expertise and leadership and thinking, rather than following the herd "because that's what you do" (anyone 'mooing' out there?). Yes, I suppose I have a completely different definition of "least restrictive environment." But then again, I define a lot of things differently than the crowd!

Which brings me back to my real rant and frustration, and that's that I'm feeling a bit TOO isolated in this quest to make the most of Jman's language and socio-emotional-cognitive development in part through his new ProLoQuo2Go. Self-study and self-development are fine and essential, but you can often go so much further with collaborative learning. That's exactly what I'm wanting for Jman--more 'collaborative learning.' And yet, I'm having a hard time finding folks to collaborate with about this particular angle of using AAC in a homeschooling environment for a kid who has autism and therefore even greater needs in developing collaborative experience sharing communication but is limited by mega language issues which don't further complicate the lives of everyone on the spectrum. Waaah!

But on the up side, I also know that I'm on the right track, even if no one else is running the same race. I think that there will be others like me down the road as ProLoQuo2Go becomes more 'mainstream' and other folks already on the journey of homeschooling autistic kids wtih language issues discover it and find themselves in a similar situation--wanting support and collaboration with other simlar users, but just really not interested in the 'schooly' options that are out there because we have bigger and richer developmental aspirations for our kids.

I'm sure I'll get back online again a few times/days in the future and begin questing again for homeschoolers learning with AAC for spectrum kids, but I've hopefully about got it out of my system now for a while. It's time to get back to just doing it--living life, teasing out some lessons in Jman's ZPD (zone of proximal development), and finding or creating ways to highlight those lessons with personal relevance for him so the learning sticks.

I did find TWO links to papers/presentation notes/handouts that were going along the lines of what I'm thinking. The ideas are good ideas in general, though the presentation is with regards to AAC. However, if you're a mom of a kid on the spectrum and you're looking for more than 'discrete trials' out of life, you may glean some wisdom or ideas you can apply from these links. The first is by Linda Burkhart: Key Concepts for Using Augmentative Communication with Children Who Have Complex Communication Needs. The second is by Gail van Tatenhove: Language Functions & Early Generative Language Production.

Btw, the title of this post is really more about Jman and what he's been saying with his ProLoQuo2Go several times last night and today: "I need help." It's not necessarily very impressive, because Jman has been able to ask for help for a long time by simply saying, "Help." The thing is, he often (but not always) didn't ask for help until you noticed that he needed help. Last night he wanted to the keys to unlock the footlocker with the DVD's (yes, we keep them locked up, because of Jman!). He looked at us and said, "I need help!" He got that from his ProLoQuo2Go, using the "I need" button on the homepage, which takes him to some options which include a generic "help" button, thus producing the simple message, "I need help." So, Jman went from one word spoken occasionally, and often in response when you noticed his dilemma, to three words spoken as a proper sounding sentence and initiated by him several times over the course of the evening and throughout today. I should also add that when he was told "No" yet again, at one point he burst into tears and said, "I feel sad!!!" On the one hand, my heart was sympathetic to his frustration, but on the other, I was dancing inside that he was being so communicative and expressive! But he still didn't get the DVD's. :) He also has continued to play around with "I like it/I don't like it" and is now playing around with "a drink of" (a button ending with a preposition, but he doesn't fill in the oject--a drink of what???). And today he told me with his ProLoQuo2Go at lunchtime, "I feel hungry. Let's eat dinners." (He has this thing where he likes to make nouns plural/with an s at the end, even when they shouldn't be.) So, there's the P2G update for anyone crazy enough to still be reading this (especially after my LRE rant! haha!)