A Christmas SURPRISE!

Last night I was reading over Max's weekly review sheet from school. It's always helpful to see what they've been working on so I can talk about those things with him here at home. Last week was brought to us by the color red, the number 17, the sign for "snow"....and working on A Christmas Surprise.

I asked Max about each these things, and he got so incredibly excited about the SURPRISE! that he nearly jumped right out of his socks. He kept exclaiming "PIES!" (his version of "SURPRISE!") while beaming from ear to ear and jumping around with glee.

We always joke that our secrets are safe with Max. And when he truly does have a secret, I never ask him to tell me what it is. (Partly because I don't think he would be able to tell me, but mostly because it just isn't fair to tempt him to spill the beans like that.)

But last night, I did.

We were talking back and forth about this fabulous SURPRISE! over and over and over...and finally I just asked, "What is it??"

He yelled, "CAKE!" and then promptly fell off the stool in all his excitement.

His delight was so pure and the novelty of having this SURPRISE! just wasn't wearing off, so I did what I always do at moments like this -- I pulled out the camera for some video footage.

A Christmas Surprise! from Jujyfruit on Vimeo.

I have no idea if the surprise really is cake (as he told me off camera), or if it is a mysterious Christmas-related item that sounds like "Kai-ooo!" (as he told his dad in the video), or if it is something altogether different.

But I can tell you this: I'm really eager to find out. His excitement is contagious!

*****
Also, I wanted to point out that this video captures another one of Max's enduring (and endearing) quirks -- his confusion about using the pronouns "you" and "me." It's an oddly circular grammar rule and our attempts to correct his usage sometimes turn into little "Who's on first?" comedy routines.

Think about it -- how DO you teach that? Modeling doesn't work, because what WE say is always the opposite of what HE should say. My brother actually tried switching them once, saying "you" as he pointed to himself and then "me" as he pointed to Max...but then Max mimicked, just the way we always want him to, and the pronouns were still exactly opposite.

Oh, to get inside that brain of his!

TapToTalk for Nintendo DS!

(click the button to visit the product website)

Last night I was browsing on the Teaching Learners With Multiple Special Needs blog and saw the most intriguing post -- Two Ways to Make Nintendo DS an AAC Device. (Three cheers for Kate!)

I have been scouring the web for more information and have decided that this might be IT, you guys! This might be exactly what we've been looking for! It runs on a Nintendo, people. A NINTENDO!



You have heard me repeatedly grappling with the issue of communication, and with the frustratng and overwhelming task of finding an appropriate AAC device for my son. And, honestly, this is the first thing I've seen in several years that I am ready to BUY.

Here's why.

• First of all, it has a dynamic display.* We've tried devices in the past that have only one level, but they are way too basic for our purposes. We've tried devices that can switch between several pre-programmed levels with different printable sheets or cards to swap in and out, but they are impractical (and, again, too limiting). On the other end of the spectrum are the very sophisticated dynamic display formats with so many levels and choices that my son gets completely lost or distracted. The TapToTalk program seems to offer a solid middle ground, which is what we need right now.

*Dynamic display means the user can navigate through levels by selecting options and advancing through screen after screen with increasingly narrow/specific options. Go to the online TapToTalk demo to try it for yourself.

• I'm listing this second, but it's a major selling point: TapToTalk is affordable. The one-year subscription cost for the TapToTalk service is only $99 -- a far cry from the $7,000-$9,000 price tags we've been dismayed to find on other devices. We already have a Nintendo DS, so for around a hundred dollars we could be set up! Not only does that relieve an enormous amount of pressure for making The "Perfect" AAC Decision, but it also means there's no major funding required, and therefore no insurance, no paperwork, no waiting period, no grant-writing, no approvals, no jumping through hoops, either! (In addition, the company offers a 30-day return policy, so if I'm not impressed with it, I could actually send it back and put that hundred dollars right back in the AAC fund. There's no risk.)
  


• It looks doable. I know this kind of programming always takes more time than I expect it to, but there are lots of good online tutorials and it really doesn't look complicated. I could start out with a basic outline for immediate use, and then tweak and edit and continue to build over time as needed; the customizing potential is great. In addition, the program navigation is so intuitive that I know we can hit the ground running and not get bogged down in learning a new language or reading complex training manuals. That's important, because there are very few resources or specialists in this area to turn to for assistance; I am, by necessity, the expert. I can do this!
  

• It's replaceable. My son is hard on electronic equipment. I mean *really* hard. He loves hand-held games and players....but it's still very likely that he will get too rough, or throw it, or drop it, or mess with the hinges, or pull on the cords, etc. (We have a Nerf protective shell and screen clings for ours, but I am still worried about those fragile hinges....) But this is basic, light-weight gaming equipment we're talking about! The hardware (platform) itself could be replaced, and the software is accessible online. That means the content can be downloaded again if anything goes missing. Breakage would not be a major tragedy; I really like that.
  

• Nintendo DS is a familiar platform for my son. He can already navigate on a Gameboy, and he's watched his older brother play on a DS many times. I'm confident he can figure this program out very quickly. In addition to being small, portable, and readily available, this system would also let him be just like his brother. (That's highly motivating stuff, right there.)
  

Is anybody else out there as excited as I am? I can't wait to get my hands my son's hands on this!

I have no idea whether this program will prove to be a disappointing flop, a valuable stepping stone, or a permanent solution for communicating with our son...but I am absolutely thrilled to discover TapToTalk as such a wonderfully practical and accessible AAC option!

Here's a D.I.Y. Budget-Friendly AAC Option: The Envue Digital Photo Album

We've had trial runs of several different AAC (Augmentative and Alternative Communication) devices, but don't actually own one yet. As a result, I'm always on the lookout for creative -- (and cheaper!) -- alternatives.

Our current experiment involves the EnVue Digital Photo Album.

I chose the EnVue because of its large, clear 3.5" screen and user-friendly control buttons. I also liked it because it looks like an oversized iPod (which makes it extra-appealing for my son), but it is actually made of plastic and is very lightweight.

(Truth be told, "lightweight" here is implying a bit of "flimsy"...but I have come to view electronics as semi-disposable in our household, so I'm fine with its somewhat temporary feel.) (Oh, and there is also the beware of flying objects problem in our household, so, again, I'm fine with the nice, lightweight flimsiness; it won't do much damage.)

Another feature the enVue has that seemed intriguing is the thumbnail view option (labeled below as "Thumbview"). I like this because it provides another way to navigate through the photos, allowing you to see 9 photos at a time and then select the one you want.

I had planned to load a bunch of photos on the viewer that were loosely grouped by topic (eg., Self Care, Food, School) and then use the thumbnail view to navigate to the desired topic & image. In reality, it didn't work as well as I had hoped it would as the buttons are fairly slow to respond. Max prefers to simply arrow forward and back, pressing repeatedly until he finds the picture he wants. It isn't terribly efficient for quick communication, but it does make for a fun treasure hunting game along the way. And, in the end, he still gets there.

Click on the photo to see all the technical details.

Another feature I like about the EnVue photo viewer is that the memory card is optional, which gives Max one less thing to fiddle with and/or misplace. The internal memory can hold up to 60 photos, which is sufficient for our purposes. The product box contains everything you need to start using the device, including a cable which connects the viewer to your computer's USB port. The photo editing software starts automatically when you plug it in, which I appreciate because it means no downloads or CD-ROM to mess with!

However, I should warn you that the editing software is less intuitive than you might think at first glance.

Screen shot of the photo editing software interface. Looks simple, right?

Problem #1: It is possible to scroll through the photo images without scrolling through the accompanying file name; as a result, you might end up loading the same picture file over and over even though you were clicking on a different image. You'll see duplicates appearing on the right half of the screen if this happens, but if you're trying to select and load quickly, you need to stay alert.

(You're so lucky, getting the added benefit of my experience.)

Problem #2: Photos must be loaded in the order in which you want them to appear; you cannot move or organize them once selected. For random photos, this is not a problem; for a slide show with text or chronological order, plan accordingly! If you forget to include a picture that needs to be towards the beginning, you will have to delete and then reload all the subsequent photos in order to get it up there. (I would have saved a lot of time had I known this in advance! You're welcome!)

Though it would force you to sacrifice some degree of control over the editing that connecting to a computer permits, using the memory card would greatly simplify the loading process.

In fact, I think it would be a wonderful way to send photos back and forth between school and home. It would be quite simple to photograph a class party, or field trip, or other "hot topic" and then just pop the camera card in the viewer to send along with your child. (I'm going to try that method next and let you know how it goes! Maybe it's not as easy as it sounds.)

Want to know what Max is watching? CLICK HERE to find out!

The EnVue Digital Photo Album is no longer available from the official product website, but it is still listed at amazon.com (wide range of pricing, from $19.99 to $67.50!) and at WalMart (currently on clearance for $20).

The EnVue is not perfect, but it is a very handy shape and size and offers remarkably good photo quality -- all at an affordable price! I'm quite excited by it and think it's well worth purchasing at its current clearance pricing. (But if you have $67.50 to spend, I'd encourage you to look for an alternative product.)

I'd love to hear about other products (digital photo viewers, in particular) you come across that would lend themselves well to this type of D.I.Y. portable AAC usage! Any others out there I should try?

D.I.Y. Communication Device for School

Ready for the first day of school

School started today!

Morning came early, especially after the last-minute, back-to-school shopping rush that came so quickly on the heels of our family vacation. And because last night, after all the school supplies and gym shoes and completed forms had been successfully rounded up, there was still one thing left to do: complete Max's assignment.

His assignment wasn't very difficult or involved. We were simply supposed to send in some photos or something he could share with the class about his summer vacation -- sort of an abbreviated take on the "What I Did on My Summer Vacation" essay from days of yore. It's a simple task for most of us, but when the child doing the sharing is nonverbal, things get trickier.

So this year I had the idea to create a slide show with captions that Max could take with him to facilitate his task. I selected an assortment of digital pictures of some of his favorite things from the summer, then made some text slides to explain a bit about each photo, and loaded them all onto an EnVue Digital Photo Album. (Read all about the EnVue by clicking here.)

Hypnotized by his Back-to-School slide show.

Max was thrilled with the whole thing -- electronics, pictures, summer memories, favorite people, all rolled up into one! We went through the slide show together before bed and again in the morning while he was waiting for the bus to come, and he was prepared. He knew how to turn it off and on, how to navigate through the photos, and he remembered and exclaimed over the activities captured within the photos. (He even started imitating my reading of the text slides!)

It worked really well, and I definitely think it's an idea that warrants further experimentation: using a digital photo viewer as a budget-friendly, D.I.Y. communication device!

Here's the slide show:

Back to School Slide Show from Jujyfruit on Vimeo.

*Note: the images on the viewer are perfectly clear, although this slide show version is pixellated; I think it was a bad upload and will try to correct this!*

I'm also including a clip of Max using the EnVue viewer. His initial excitement is gone, because it was already the end of Day #2 for those pictures. Instead of exclaiming and rushing through the pictures, he's just sort of playing and exploring. Actually, it's a pretty uneventful clip, I realize, now that I'm describing it....but I always think it helps to see something in action, so I'm leaving it on here.

Using the Photo Viewer from Jujyfruit on Vimeo.

Notice how independent he is with this thing? At one point he could use some help, but he quickly pulls the viewer out of my reach so he can do it himself. Also, I like how he verbalizes along with it. He says "turn" as he moves to the next slide (it looks like a page turning on the screen), and at one point he spots himself in the crowd and says "Maash!" (the current version of his name). He exclaimed and verbalized much more initially, but now that the novelty of each photo has worn off a bit, he's in quiet processing mode.

As a side note, did you catch the part where he suddenly turns to me and signs "cracker" out of the blue? Conversations with him do tend to jump around, which is another reason I loved the slide show idea. The storyline and images keep him on track (and help the viewer/listener do the same).

I think this idea is a keeper!

Back-to-School Shopping Excitement

We had a thick back-to-school shopping magazine from Target in our mailbox the other day. Max spent a long time looking through the pages, pointing to things he recognized, or liked, or wanted me to name for him.

He found fruit snacks, letters of the alphabet, an entire page of SpongeBob items (thrilling, that!)....and then he ended up on this page, absolutely delighted by what he had found:

Can you guess what it was that caught his eye? (I couldn't, though I exclaimed over several different items while I tried to figure it out. He kept me on track.)

Here's a closer shot of the same page, with Max pointing to the hidden treasure:

Pointing always helps. Thank you!

He found his name! It was very small, slightly blurry, and had gone completely unnoticed by me. I was highly impressed.

I think this guy is ready for school! (Which, incidentally, starts back up TOMORROW! Yay!)

Meltdowns.

I don't know how to describe accurately how bewildering Max's meltdowns are sometimes. It looks like he is violently casting fishing line out of his arm, leaning way back and then flinging forward in a tightly-wound bent-knee standing crouch. It has occurred to me to videotape one of these -- simply to show someone exactly what is happening and how completely bewildering it can be.

His entire body seems to be directing towards the thing he wants...and yet it's not, really. I can head in the direction he's indicating, ask about the things I see there ("is it this?" "Do you want this?" "SHOW ME WHAT YOU WANT!") and he just keeps angrily shaking his head no, casting that arm repeatedly, pulling at his shirt in agony, blowing snot out his nose, spitting, hitting his cheek, pinching his arm, slapping his thigh, banging his head. There is such a blankness beyond the moment of fury, such a disconnect from all he knows (his signs, specific pointing, WORDS!). And even though they are intense, his meltdowns doesn't end with him collapsing into a puddle of exhausted tears on the floor. He continues to give this agonized directional pointing until he eventually just...stops. It's as if he gets stuck. And then suddenly he's unstuck.

I've tried various approaches and pretty much everything in my bag of parenting tricks -- time-outs, physically holding & restricting him, even in-your-face scare tactics like smacking his hand or thigh, grabbing his face to make him focus eye-to-eye. I've tried the gentler family of approaches, too -- ignoring, turning my back, leaving the room, calm repetition, distraction, observational & empathetic comments ("I can see you are really frustrated and trying very hard to tell me something"), re-stating rules ("no hitting", "no spitting", "you'll need to be in time out until you can calm down"), offering cues ("point to what you want", "use your hands/words"), naming/touching/suggesting objects he might want, guessing, offering reassurance/kisses/hugs, offering alternatives, promising reward when he stops. Some things work more consistently than others....but it remains a giant guessing game and makes me feel largely ineffective.

I think there are times when he doesn't even know what he wants -- when an original frustration or upset simply morphs into something beyond his control. And that is what makes it so difficult. I'm playing rounds of scary charades where there is no correct answer.

Yesterday, he went on and on and ON. I eventually determined he wanted to watch Finding Nemo, a movie that was out of his reach. He knows how to sign "fish" to say "movie", he knows the dvd case by sight, he knows where it is kept. But somehow ALL these things vanish. I was even naming movies, offered to lift him up to grab it, holding up options ...NOTHING.

When the episode finally ended, and I realized what he wanted, he was relieved. Tired, smiling, suddenly focused. I made him sign "fish" and say "movie" several times each. I fed him the phrase "I...want...fish...please" and "I...want....movie....please" several times each. He could do them, quietly and calmly and with a smile. (He even shushed me -- finger to lips, "shh" -- to do it quietly.

And then he was fine. It was over. Completely over, fully back to normal. (For him. But I remain shaken and frustrated and the whole traumatic episode lingers in my mind.)

It was helpful to read this article from Disability Scoop about "Behavior, Taming the 800-lb. Gorilla" and to see the phrase "out of his control" because that is truly how it seems. The key point that stuck out for me was the difference between a tantrum and a meltdown.

In the article, Deborah Lipsky explains, "It depends whether you’re dealing with a tantrum or a meltdown. A meltdown is when behavior is beyond the individual’s control.....Generally with a meltdown the person is not looking for a direct response from you. Afterwards there’s often a sense of remorse and regret. A tantrum is a manipulative behavior, a scheme for a person to get their own way."

That definition helps me to think about the situation differently. If Max is truly having meltdowns, then my sense that he doesn't even know what he wants is probably accurate. (And that would require a different set of responses from me than a tantrum would -- probably solutions that are more sensory-based.) I still don't know the answers here, but it is definitely food for thought.

But I still want to know WHY. What triggers this? Why does he suddenly forget what to do? How to say it? Why doesn't it occur to him to communicate?? I mean actually attempt to communicate -- using his brain, his hands, his mouth, his words, ANYTHING, instead of transforming into a bundle of raw ...something. I know the meltdown itself is communication of sorts, but it is such a regression. (And if he is truly out of control, why can he keep to a repeated routine, manage where he bangs his head, etc..?)

I called a Behavior Specialist. We're setting up an appointment.

Fabulous Food Photo Cards!

I went to a garage sale over the weekend and found the most fabulous thing 50 cents has ever bought in the whole history of garage sales: a bag of food photo cards!

The food cards were from a nutrition education kit which I left behind for some other lucky shopper because I only wanted these fantastic pictures. Unfortunately, I realize now that I can't even tell you the name of the company that produced these cards because there is no identifying information anywhere on them.


Max was just as thrilled as I was with these cards. We sat on the floor and went through almost all of them, playing "The Food Game." I held them up one at a time and quizzed him, and he said or signed the ones he knew, and then we practiced the ones he didn't know. Some of the foods were a bit obscure, so we skipped those. The vast majority, though, were readily identifiable and familiar.


A couple of his classifications were especially interesting to me. He said this one...


...was "pie." It certainly is round like a pie, and it is divided into pie-shaped wedges, so I understand why he called it that. (But it still surprised me! Sometimes I catch a little glimpse into the inner workings of his mind like this, and it never ceases to fascinate me.) Max has had grapefruit before, but I guess I've always scooped the sections into a bowl for him and he didn't recognize it. I told him what it was, and the next day he pointed to the picture and said, "fruit."

These four photos are especially helpful, too...

...because they are all things he eats regularly at school, but we never have at home. He loves to tell me he had milk at school, but rarely wants to drink milk at home; apparently the little cartons make a world of difference! And the canned fruits -- especially the fruit cocktail -- look (and feel!) completely different from their fresh versions, so the pictures were a wonderful link to talking about things he eats at school.


The cards also helped him link some specific foods to two of his favorite TV shows. Celery is another food we don't eat very often in its pictured version. We chop it up for salads or cook with it, but seldom eat raw stalks (too stringy & gaggy). Max didn't know what it was -- or at least, didn't have a way to communicate that he did -- but he tried to repeat the word after me. I reminded him that the WonderPets eat it at the end of every episode, and I could tell he was processing that information as we went on to the next card. Suddenly, his eyes lit up and he pointed at the blank TV and started saying & doing his sign for WonderPets and I knew he had made the connection.


(He keeps saying "Blue's Clues" about the chicken picture, though I'm not sure what the connection is yet. I'm going to have to investigate, because he clearly wants to tell me something about it.)

I've searched a bit online so that I can provide a link for this food card set, but I haven't found a match yet. Each photo is life-size and very realistic, laser cut to the shape of the food itself. There is a single tab on each food card, listing the name and serving size, and the back side of each card lists the full nutritional analysis and food group(s) it belongs to. There are about 180 cards in the set. Does anybody out there know the company link or purchasing information for these cards?

In the meantime, here is another realistic food card set that looks like a good alternative and is readily available.

Nasco's Food Cards II

The same company offers this set, which uses the more traditional PECS type of cards:

PCS Learning Magnets - Food Words

The size and similarity to most speech output device buttons makes them useful, of course, but I think the magnetic backing makes them especially practical because they would be sturdier than paper cards and easy to stick on the fridge, right close to all the action. Perhaps that set will be our next exciting purchase.

And as long as I'm making product lists here, I've been drooling over this set:

Life/forms Food Replica Set

The realism is truly drool-worthy, isn't it? It's a high-dollar item, though, so will simply go on my list of things to watch for on ebay. (and garage sales!) Who knows? Maybe I'll get lucky again!

Signing Time Swimsuit

Max got a present from his Grammy today -- a new swimming suit with built-in floats. He was excited by the present to start with, but he got even more excited when he noticed the Body Glove logo on the front of the suit. He started exclaiming, "Signing Time!" because he thought it was the hand logo from his Signing Time videos.

He carried the suit around for a long time exclaiming repeatedly over the Signing Time hand, then he wore it for a while, and he even ended up sleeping with it in the bed beside him that night. It was about the biggest thrill $15 can buy! (Thank you, Grammy!)

Here's a short clip of him with his beloved suit.

I also like this clip because it's a good sample of Max's speech. Notice the irregularities? Most of the time his speech has dropped consonants, so "Signing Time" becomes "High-ee Eye," for example. But then he pronounces "present" with a hard "p" sound...only the other sounds get jumbled up and it comes out "puh-nay." And his pronunciation of "Grammy" varies wildly.

The other thing that is irregular is his level of comprehension. Sometimes it's clear that everything clicks immediately and he knows exactly what we're saying...and other times there is a mysterious blankness. It's never entirely clear if that blankness is due to the fact that he simply doesn't have a way to answer the question, or if he really does lose track of the conversation now and then. He's very smart, and surprises us all the time with his memory and comprehension...but the random black holes appear often enough to always keep us guessing.

Finally, notice his echoing at the end of the clip? Where he talks WITH me? He doesn't do that as much any more, but he used to a lot. (Here he realized what I was doing and he brought an end to that game quickly enough -- the present was way too exciting for me to be fooling around like that!)

Sibling Issues Strike Again: It's True, Life IS Unfair. (Now What?)

In my post about the school picnic, I said I reached a new level of acceptance regarding the expectations I have when taking Max to activities or events. What I didn't mention was the fact that there is a slightly different set of expectations involved when the activity is not one specifically for Max.

I still feel a lot of ambivalence about how to include him in certain activities where the challenges may not be as acceptable.

Now, I'm not talking about issues of accessibility. We don't have a wheelchair to maneuver. We don't need ASL translation. I'm not even talking about community attitudes or tolerance (though that certainly does have an effect). I'm talking about our own, personal expectations.

I've heard families make the blanket statement, "Our child is part of our family; if she's not included, we don't do it."

I've also heard parents insist, "It's important to do things without him sometimes."

Frankly, I can see quite clearly from both perspectives, and place my personal viewpoint somewhere in the middle, sliding further towards one side or the other from time to time. (What that looks like is this: we do much less than we used to and frequently find ourselves turning down invitations or avoiding activities; and then when we do venture out, it is quite often without Max.)

As we get closer to summer vacation with all its trips and practices and campouts and sleepovers and picnics and parties and etc....well, this whole topic is weighing heavily on my mind. I want to stay balanced -- as a parent and as a family. It's not always clear to me how to do that, though. (The real question is not "To be, or not to be?" but, "HOW??")

Our decisions about what we will and won't do vary from day to day and case to case. Sometimes, sadness at leaving Max out -- or an unwillingness to do so -- is the stronger pull; other times the frustration or worry about bringing him along wins out. And, frankly, there are things that we know in advance will be extremely challenging for him, or simply aren't compatible with his needs or moods, which makes the decision to exclude him simpler.

(Well, it's simpler assuming we have the option and the childcare it requires, I should say. But that's a topic for another time.)

Sometimes the decision is based on purely selfish reasoning -- I simply don't have the energy or motivation to try to make it work. Or I need to be able to focus or participate in (or, simply enjoy) something without the distractions he can bring. Or, bluntly put, I want a break.

The times when the issues seem stickier -- or, occasionally, clearer -- are when the activities or events are for Max's siblings. When his brother or sister is being honored or acknowledged or celebrated, it doesn't always work to share the limelight, or divide our attention, or split the parental unit.

*****
I'm suddenly reminded of a song on a Hap Palmer children's tape I used to play frequently when our daughter (the oldest) was a toddler. The song was called "Baby's First" and the chorus always came back to the phrase, "Everything is baby's first!" One day my husband said, "It's SO TRUE! -- Everything is All About The Baby now!" He had misunderstood the lyrics (which mentioned a whole list of milestones in the verses, like "Baby's first bubble" and "Baby's first bottle" and "Baby's first steps") to be a hierarchical command of "Babies First!" or the contraction of "baby IS first." We got a big kick out of his misinterpretation. We also got a lot of mileage out of the profound truth -- and caution -- it seemed to hint at. I think of it now, because Max is the baby in our family. (And I mean that on several different levels.) It seems as though the refrain is too often coming across as "Max is first."

So, anyway, all that sibling and inclusion stuff? They were the issues that bobbed to the surface yesterday, yet again. And that is the story I originally sat down to write about.

*****
Max's older sister had her first track meet yesterday, which is when it all started. It was a gorgeous day, the meet was short, everything was outside -- basically, it was the perfect type of activity to take Max along to. He was very content and enjoyed cheering and watching all the action and was the model of good behavior. BUT he had to go to the bathroom during his sister's event! TWICE. My husband took him and they could watch from the sidelines as they walked along. But, really, it was just such lousy timing. It didn't seem like he was trying to manipulate or steal the attention or anything (and we certainly want to encourage his use of the toilet!), so they went. It wasn't a big deal, really. Except that it kind of was.

Later that evening, Max's sister had another special event. An essay she had written won 3rd place in a contest and she was invited to attend the City Council meeting to read the essay and be recognized by the mayor. I knew there would be at least a few other kids there, too, along with their families, and our town isn't all that big. So even though it was a rather formal setting, I thought it appropriate for our WHOLE family to be there, to cheer her on and offer our proud support.

(Plus, it's the City Council. Where ordinances are passed and community issues are decided. I should think it's an appropriate setting -- at least in theory -- to inclusively welcome ALL members of our community. But again, that's a topic for another time.)

I told Max where we were going and what we would be doing there and what behavior was expected of him (and even reminded him of a few things we would NOT be doing). I kept it simple. I repeated it over and over -- at home, again in the car, and whispered more in his ear as we sat and waited for the meeting to begin. He said "church" and I said yes, it was a lot like church. He signed "music" (we just attended a band concert last week, with similar instructions & rules) and I had to break the news that there would be no music this time. He was disappointed, but sat quietly and nodded and watched everyone.

And then, just as the meeting was called to order and the first item on the agenda was announced, Max fell apart. He would not stay seated. He grabbed my daughter's essay out of her hands and crumpled it. He struggled and squirmed. Then he started to yell. He spit on the floor and thrashed himself around. My husband wrangled him out of the room with little delay, but his shouts were still audible from the hallway.

They ended up going outside for a bit so Max could calm down, then slipped into the back of the room so they wouldn't miss the very thing we were there for. Frustratingly enough, when I cautiously looked back at them to see how they were doing, I briefly made eye contact with Max (how DARE I??) and he started to yell again, and they whisked back out, briefly, one more time.

They made it back in before our daughter had her moment in the spotlight -- thank goodness -- but it was touch-and-go there for a while. And even though my husband was present in the end, he was sitting in the back of the room. Frustrated. Embarrassed. Annoyed. And, once again, separate from the rest of us.

This is the thing: even when we do "whole family" events, we are generally split in two distinct groups, with my husband and I doing tag-team or parallel activities. They don't really feel like "whole family" events.

In this particular case, while my husband was dealing with Max in the back, I was sitting with the two older kids towards the very front of the room, and they were visibly shrinking in their seats. My daughter, in particular, was terribly uncomfortable. I could see the look of pride drain from her face, as her smile crumpled and her face turned red. Her nervousness was being trumped by self-conscious horror and the fear that Max would destroy her essay (quite literally, as it were). In addition, she was worried that her dad might miss the whole thing.

This particular situation had a (relatively) happy ending. Max was quiet and cooperative through the actual reading of the essay, which was the critical moment for us. We left as soon as that part was over, making it out of the meeting hall without further ado.

Her big moment.

We didn't linger or visit or chat. We should have. But instead, we just got in the car with sighs of relief and left.

So Proud (and relieved it was over!)

At home, I took some pictures of my daughter with her award. Even then, Max was saying "cheeeeese!" and trying to worm his way into the photo. I insisted his sister had the spotlight alone for a number of shots and that he wait his turn.

And when his turn came, all of the acting out transformed immediately into delighted grins.

"Cheeeeeeeeeese!"

*****

I don't think these sibling issues have clear-cut solutions, and we continue to fumble our way through. Sometimes we fail, sometimes we succeed -- but each situation is different, so there isn't always a lot of carry-over wisdom. What works one time might not work the next; then again, what fails one time might work the next. We're working without an instruction manual, relying heavily on trial-and-error.

It's not fair that the squeaky wheel always gets the grease.

(But then again, isn't that WHY it's squeaking in the first place? Because it needs that grease??)

So then I decide that applying the right grease to the right spot will make the squeaking stop. And then the ride will be smoother and more enjoyable for everyone, when all the wheels are turning smoothly and efficiently along together.

(But how do we know we're using the right grease? How do we know the squeak isn't actually being caused by some other, hidden part that's out of alignment or cracked or weakened or just plain missing?)

Either way, the question remains -- How do you fix a chronically squeaky wheel without bringing the entire vehicle to a dead stop? Surely there's a way.

(But then again, sometimes aren't you better off just leaving the wheel in the shop for some much-needed maintenance work instead?)

I'm obviously not a mechanic and I clearly haven't figured out the best way to maintain all these wheels.

I could really use a manual. (...and also a new metaphor!)

I'll keep thinking about this one.

Autosomal-Recessive Bathtime Vocabulary Quirks?

Misery loves company a properly run bath.

Max loves taking baths, and a good long soak in the tub was just the thing to help pass the time and bring him some comfort during the endless week of illness.

I had trouble getting the water temperature right for him, though. Because he was feverish, I didn't want him to be soaking in a really hot tub of water, so I tried to keep the water temperature a little bit cooler than normal.

Two different times I ran the water, deemed it the appropriate temperature, and had him get in...only to have him start protesting and saying, "ouch! hot!...ouch! hot!"

The first time I added a little more cold to get the temperature down. But he kept saying "ouch! hot!" and I knew it was NOT hot. Bath time was cut short; he was miserable and I thought he must be really feverish if that water felt hot to him.

The second time it happened, I again added cold and he got really mad and kept saying "ouch! hot!" so I added MORE cold, and he got MORE upset and said MORE "ouch! hot!"....until suddenly he switched gears and signed "cold" and shivered.

I then turned the faucet back towards hot, and as the water got warmer, he relaxed and nodded yes.

Suddenly it clicked.

I recalled my mom telling how when I was little, she had a similar struggle running my bath water to the right temperature. I would say "warmer" so she would add hot. But I would just keep fussing for it to be "warmer". What I meant was that I wanted it warm. Not hot; not cold. WARM. In my mind, warm was an actual temperature -- a point to return to -- not a relative comparison.

I think Max was using his words in the exact same way. He was requesting a temperature. The water wasn't too hot for him; he just wanted it to actually be hot!

It makes perfect sense, really, when you think about it from a certain angle.

What can I say? Great minds think alike!

Dr. Seuss's AACs

Dr. Seuss's AACs
(A Poem about Augmentative & Alternative Communication)

by Jujyfruit

Did you know there are some
for whom speaking is tough?
Who use signing, and pictures,
and pointing, and stuff?

But those methods can lack;
They can frustrate all!
(And leave us each feeling
quite helpless and small.)

But there are cool new ways
for a voice to be heard,
and to be understood,
without saying a word!

These high-tech-y tools
are expensive and rare...
but each time I check,
a brand new one is there!

They're newer than new,
and they sparkle and shine,
with computering parts
that are finer than fine!


Oh, the wonderful things these devices can do!
They can scroll straight to "cow"! They can help you say "Moo!"
They can show you a "bowl" or a "sister" or "bus;"
they can help you say "Help!" with such minimal fuss!

Take oodles of photos!
Build word lists galore!
Use the voice of your choice,
speak in school -- or the store!

Give your puppy a name!
Select lunch on your own;
ask for milk, juice, or pop!
Even talk on the phone!

Give your teachers a way
to test how much you know!
Tell your dad that
your shoe is too tight on your toe!

Request movies by name!
Then, just for a lark,
tell your mom that you want
to eat cheese in the park!

Yes, the world is your oyster,
and you are it's pearl;
Communication's the KEY
for each boy and each girl!

It's exciting and fresh --
talking fun that is fun!
But there IS a small catch:
You can only have ONE!

The selection is vast;
the technology new.
Take a carefullish look;
Find the one right for YOU!

Do you need overlays?
Would a camera be nice?
Do you like Unity?
Or would Minspeak suffice?

Are we shooting towards goals
of literacy?
Is it helpful to have
just a small qwerty key?

And how many screens --
sixty-four or just three?

What? What's that? What's that that you say?
You say 64 is the magical way?
Sixty-four will display all the things you might say?

(Are you sure that's not
far too much stuff in the way??)

Or maybe it is?
You really don't know?

How do we decide
which direction to go?

There are all shapes and sizes,
and colors galore!
But we can't try them all,
and they keep making more!

Should one organize words
by theme or by list?
Have a visual base,
or conceptual twist?

And how does it feel?
Does it fit in your hand?
Do you have to sit down?
Will it work when you stand?

Can you use it in rain?
See the screen in the sun?
Can you lock the controls?
Charge it up on the run?

Is it easy to clean?
Will it fit in your bag?
Is there user support
without having to nag?

Is it heavy to hold?
Are there cords in the way?
Can it actually say
all you hope, dream, and pray?

Does it need USBs?
Or expansioning packs?
Is it easy to learn,
yet has challenging tracks?

Is the camera built-in?
Are there symbols or pix?
Can it play any games?
Does it do any tricks?

Will it speak Japanese?
Can it surf on the web?
If I buy the upgrade,
will it dootle or fleb?

Can it dance the fandango
or do the Watusi?
Does it have shoulder straps,
or clip to one's caboose-y?

Is it bluetooth compat?
Does it lay golden eggs?
Can it walk by itself
on its wee robot legs?

Is it unbreakable?
Does it use rocket fuel?
Can it fly on its own
to and from my son's school?

Does it come with its very own echo-locator?
(And if lost, will it come right back --
sooner than later?)
All this pick-y and choose-y
and question-y stuff
makes my head feel all woozy!
ENOUGH is ENOUGH!!

So which choice is best?
Which one passes each test?
Which rises above all the lowlier rest?
From near and from far,
North, South, East, or West,
which one is the
perfectest,
bestliest,
BEST?

How I dread, dread, dread, DREAD
sorting through in my head...
Can't anyone out there

JUST
TELL
US,
instead?

"I Love You" Hand Sculpture

Long ago, Max's older sister started a little routine with him before bed. She would tell him good night, then say "I Love You!" and make the ASL sign with her hand. Then she would shape Max's fingers into the same sign and they would exchange their kisses or hugs or grins for the night.

Over time, Max started doing it back. He can't quite make the official ASL sign, but he sticks his thumb and pinky out and makes the official Max sign. And while he's doing that with his hand, he also says, "Eeee Oooo," which is not the official English phrase, but is definitely the official Max phrase.

The nightly routine has actually morphed one step further -- Max's sister often says "Eeee Oooo" now, too! (In fact, we all do occasionally.) In return, Max often initiates the routine and offers up his hand sign all on his own. This sibling love? It's a beautiful thing to see.

I enjoy having such a concrete visual in the house. The hand itself is beautifully rendered, but I also appreciate the symbolism behind it. It makes a statement: Our house is different.

But then again, everyone's house is different, right? Perhaps there is a hand out there for you, too!

These hands are hard to find online, but you can check here for several versions.....or go check your local TJMaxx, which is where I found mine for $14.99.

(Vitruvian Collection by TMS Inc.)

My Funny Valentine (and His Valentines)

Max helped get his Valentines ready to take to school today. I did the punching out, card assembly, and addressing; Max added the stickers and his signature.

We gave his classmates some little punch out cards that came with Pixie Stix. I bought the cards without Max's input, but knew that I wanted to get something that he would recognize. No cartoon characters or animals this year, but they've been talking about heart shapes all week in school, so these fit the bill. I also try to choose Valentines that are somewhat interactive for him & his classmates -- like those that come with scratch-n-sniff labels, stickers, temporary tattoos, play dough, or candy -- as there are non-readers & non-sighted kiddos in there. Max was all about the CANDY this year!

Side note: I was slightly concerned that he would be reluctant to give them ALL away and not be able to keep one for himself, so at the last minute I added one that said "To Max, From Max." I don't know if that made things easier or harder (or neither). Details like this always remain mysterious to me unless I make a point of asking his teacher about them. Oh, to be a fly on the wall! He's a different kid at school than he is at home. I wish they had one-way observation windows -- or, better yet, web cams! -- in his room.

For Max's teacher and classroom aides, we gave plastic heart-shaped containers of M&Ms. I had Max decorate them with stickers and then sign his name in permanent marker on the back of the container. The first "signature" was pretty funny because he really enjoyed the permanent marker sliding across that slick, curved surface; he got all side-tracked putting that nice, dark line of ink on there and sort of forgot to write his name. It was actually a fairly challenging task, with all those teeny-tiny stickers and tricky surfaces, but he happily stuck with it for quite a while! (and only tried twice to free all those M&Ms)

When I saw Max after school, the very first thing he said to me was "CANDY!" in big, exuberant signs on his cheek and a satisfied, sugary grin. :)

Menards, Mangers, Maxes, Meaning, and Material Miscellany

Subtitle: Random Memories from the Holiday Season, Christmas 2008

Max has been pretty delighted with all the Christmas decorations everywhere we go these days. He exclaims and grins and Ho!-Ho!-Ho!s and wants me to talk about everything we see. I decided to take him to Menards home improvement store the other day to see the rows and rows of Christmas items on display there. (It's close to home, has free admission, and no lines to wait in -- the perfect low-stress outing!)

Max loved it! We spent quite a while just wandering up and down the aisles and ooh-ing and aah-ing over the giant inflatable snow globe, and the thousands of twinkle lights, and the sparkly ornaments, and the Santas GALORE!

...Although I did make the mistake of starting out in the aisle with all those stuffed, interactive critters with buttons to push. We had the entire row singing and playing banjo and barking and dancing and rocking and twisting by the time we worked our way through...and then Max thought that much of the other stuff on display was for him to touch and poke and move, too! Yikes.

(Which reminds me to comment on how nice the other shoppers were! Even when faced with the cacophony of Christmas critters we created, people were indulgent and cheerful, smiling at us and making friendly comments. One couple even stopped while passing by and the man asked if he could lift Max up to give him a closer view of the train running through a miniature Christmas village display. It was interesting to watch the interactions; I think shopping for Christmas decorations brings out the good in people.)

I bought Max a tiny tree to take home, and then let him pick out the lights for it. We settled on a string of tiny, multi-colored lights.

Carrying the box to the checkout counter helped keep his hands off the toys and candy so temptingly displayed along the way, too. Sometimes everything just works, you know? You may smirk at our Very Special Menards Christmas Outing, and admittedly I have certainly gotten my share of chuckles out of the entire concept, but I also have some very fond memories tucked away as a result. Sometimes seeing the world through his eyes makes things seem so magical & new again. Ahh, simple pleasures...

*****

On Sunday, the kids all sang in church at the beginning of the service. My husband was out of town, and we were running late, scrambling in at the last minute. Max was initially reluctant to join the group of kids, but quickly warmed to the idea and I promptly left. The other kids stood for the song, and most were singing, but Max sat with his teacher and watched the congregation and listened to the music. When the song was over, the kids all joined their families for the rest of the service.

The service seemed so long; Max certainly doesn't listen (so I don't, either). Does he know about the manger? Does he understand the Christmas Story? No, not in that way. But he understands friends and singing and families and animals and babies and love and joy -- so, really, you could argue that he does. He gets the meaning.

Max was a wiggle worm, shifting and shuffling and squirming, making frequent exclamations in his NON-whispering way. But then the singing started. He didn't sing the proper words or proper tune while up front with the children, but when we all stood to sing, he was right there with the rest of us. He insisted on holding his own hymnal (with two fingers slipped in back, just like his teacher does in school, as if to turn it around and show everyone the pictures) and ran his voice up and down, gentle and high, forming his shapeless words, just as sincere as could be.

So, yeah, I'd say he gets it. Maybe not "it" (the precise, defined type), but definitely It (the Truthy Meaningful type).

*****

Back at home, Max wanted to watch The Grinch. (Jim Carrey version) He's been watching this movie off and on for months now. It's nice that it is finally the proper season, and he can see similar images all around him. He particularly wants to watch the ending of the movie -- from the loud excitement of the Grinch's thievery through the part where the Whos all join hands and sway back and forth and sing their Who-y song. As a matter of fact, Max's sign for the Grinch movie in particular -- and for Christmas, in general! -- is to spread his arms and legs and rock back and forth, like one of the Whos in the singing scene. And then he wants us to say, "Daboo Florays" in acknowledgment of his "sign," because that is the phrase we have jokingly used in reference to the song the Whos are singing. (What are they saying? Anyone? I really need to google it!)

I've been trying to teach him the actual sign for Christmas, and he's getting it, but he needs a reminder and a prompt, and prefers to use his own full-body enthusiastic sign. (And actually, his version does capture the spirit of the season much more accurately, both in root and essence...) I like to think that he appreciates the sentiment of that scene, and of course, he likes the music. I think he also probably has special interest in that particular portion of the movie because the Grinch shouts at his dog, Max (nice coincidence, eh?), several times and then they end up rolling around on the floor together. It's nice to finally see that poor dog acting happy...and it's probably also nice to hear the music of one's own name.

So we're working on his Christmas sign, hoping to get one that is more universally recognizable and doesn't require an entire back-story explanation.

******

Max's speech therapist asked me what he wanted for Christmas. It's such a basic, common question...but it floored me for a moment. I really was blank! I mean, I know some of the things he's been into lately, and I have a pretty good idea of the type of things he'd probably like, and I have a list of things I've decided he needs...but somehow it really threw me off balance. I suppose we don't really ask that question! Can that be??

What does HE want? What does he WANT?

I stammered around and then kind of listed themes, telling her what he's into these days, and a few items I know he will be getting. The crazy thing is, I have tons of ideas for him this year! There have been years/stages where it has been really hard to know what to get him for birthdays or Christmas, but this year he's had some very clear preferences and delights. I've observed and I'm totally prepared! But I still don't really ask him that question. How would he answer?

Well, he'd do the same things he's been doing: pointing and grinning, picking something out in a crowd, carrying it around, using a sign or word for it...that's his answer. But it's not exactly the same.

On the other hand, maybe here he gets it, too. There's some stuff that is fun. Stuff that makes us laugh, stuff that we enjoy, stuff that has all the bells and whistles. But really, the details are not terribly important. Those things come and go. They are temporary. They may delight us anew each day...or they may drop from our radar, quickly discarded. It's the feeling we are after, not the thing. For me, grasping this concept is somewhat of an ongoing, lifelong lesson; for Max, though, it seems obvious.

He wants something that makes him smile or makes him feel good. But it doesn't really matter what it is, because the stuff is just on the side. A temporary distraction. A passing delight. His main pleasure is simply being with all of us, sitting close and playing together and smiling at each other. The rest is icing.

I'm still learning this one. Max, on the other hand, gets it.