Wednesday, July 30, 2008

Communication 101

Tango! image from

Max has had a rough couple of days. And when Max has a rough couple of days, we all have a rough couple of days.

I have been trying to pinpoint WHAT exactly is making his life so difficult lately, and how we can make that thing go away! It seems to be an impossible task right now, with the answer just out of reach and constantly morphing. It's like trying to grasp water in zero gravity. I can't seem to find all the magical little floaty spheres, and they don't fit together in a recognizable form.

While there are many things that make summer hard, one of the obvious common denominators is communication. Or, rather, the lack of.

I know that being able to better communicate his wants and needs would greatly help reduce Max's frustration level (and ours, too!), but I don't know how best to proceed for him to be successful. He signs some things. He "says" some things (we understand; others don't). He "sing-songs" some things (specific repeated intonation, pitch, and rhythm help decipher a phrase -- but again, it only makes sense to us). He points to some things. He nods yes or shakes his head no at some things. He can push buttons or select a picture or perform a meaningful response....

...but he only does these things spottily, and I don't completely understand this. Is it when he feels like it? When he remembers? When he's in the mood? When he's motivated? When he's prompted? When he's calm and focused? When it's in his internal vocabulary? (Answer: d. All of the above)

Why is it so random? What is the key here??

Home life is much less predictable than the school day. At school, Max knows his routine and can communicate and perform quite successfully within that structure. But summer at home? He doesn't have the knowledge base for predicting or communicating about the variety of things we do. He's often just left in the dark, not fully comprehending where we are going, or what is expected of him, so even if he can provide some input, it doesn't really count.

What's more, transitions have always been hard for Max. If he's "off", he will clam up, rub his seams, tell me "shh!". He regresses, resorting back to sensory input and total dependence, and tries to shut down. When he's "in a good place"? Well, magic can happen.

Those really are the phrases I use, by the way, -- "Off" and "In a good place", because I don't know how else to describe it. When he's off, he's off. He could be hungry, or tired, or frustrated, or overstimulated, or understimulated, or sick, or bored, but much of the time I can't tell, so I just say he's off. And when he's in a good place -- well, I vaguely list the opposite of those things. He had a big meal, slept really well, had some (but not too much) physical activity, got lots of 1:1 attention, was very focused, woke up in a good mood, etc etc etc. I know that there are numerous correlations in there somewhere, but I don't know the exact cause-and-effect formulas!

I would love to know what's going on in that head of his (and for the rest of the world to know, too), and, clearly, having an improved communication method is a critical piece of the puzzle.

Max is going in for his weekly speech therapy session today. We changed the appointment from his usual time, because the therapist has borrowed a Tango! communication device for the month. I'm so ready for him to have some kind of assistive device. Is he?

We borrowed a tango! (the communication device pictured at the top of this post) just about exactly one year ago, and he wasn't ready for it. He was completely obsessed with the On/Off button, and just couldn't find his way past it to get to the good stuff. The device costs around $8,000, and though it is sturdily built, I was more than a little nervous being temporarily responsible for it under Max's incredibly rough treatment. Perhaps he would have progressed over the month, but after about a week and a half, we simply tucked it away. I ended up mailing it back, little-used, feeling very guilty we didn't find a way to make it work for him, and incredibly disappointed.

This time I am fully aware it's a long uphill climb, and am pretty realistic in my expectations. I know that it still might not be the right time (or even the right device!), but I am getting excited.

I just KNOW there is a way to make it all happen. I truly believe there is some key that will help us reach Max, and a parallel key to help him reach us. It's out there somewhere, and I'm ready to begin the search.

The tango! website has a really neat emulator you can try from your home computer that gives an illustration of how the device is set up, and how to navigate through the levels. If you would like to learn more, go to to browse around or click here to go directly to the emulator page. It's pretty darn slick!

Wordless Wednesday: Just Having a Sensory Moment...

Monday, July 28, 2008

Scroll on Down to the OK Corral

Several people told me that they didn't even notice the video on my last post.

It looked like a regular old Wordless Wednesday photo at first glance, and on some computer screens the rest of the post isn't visible until you scroll down.

So if you missed it, folks, mosey on down there and scroll awhile . The boss has wrangled up quite a show for y'all.

If you didn't miss it the first time around, and thought THIS would be an exciting new post...well, uhm, check back later, please?

Friday, July 25, 2008

Wordless Wednesday: The Bondi Blue iMax's FRIDAY?!? Already?

Well, in that case, I guess I'll add words. Or at least a few letters...

We picked up an old iMac at a garage sale for Max to play games on, and a friend got it up and running last week. (Thanks!)

Max has been playing this song on the Dr. Seuss's ABC computer game for several days in a row now, and I took about 10 videos of him singing along yesterday. He always, always sings the "P" -- right on time! -- but this clip captures a particularly inspired performance, complete with hearty "U" and "W"!

Totally Unrelated Side Note: Notice his bulky bandaged thumb? He had yet another close call... He stuck his hand right through that taped up Wordless Wednesday window two nights ago. Fortunately, the cut was shallow, but IT IS A BLEEDER!

Saturday, July 19, 2008

Microcephaly in the Media: Fancy Chickens

This is my very first reader-provided image for my "Microcephaly in the Media" collection! Thanks so much, mom faithful reader!

She spotted this fancy chicken sculpture while browsing through a home decor store somewhere in Kansas on a recent vacation. I don't usually think of "chicken" and "fancy" in the same sentence, but I'm rather fond of this old gal.

And now I have an odd question in my small does a REAL chicken's head have to be before it would be considered microcephalic? They sure do have strange proportions...

(Photo borrowed from here.)

Any other images out there? Send them to

Wednesday, July 16, 2008

Wordless Wednesday: The Sparkler

(Wordless Wednesday is a tradition in some blogs
...and seems particularly appropriate in this one.)

Tuesday, July 15, 2008

He Ain't Heavy...He's My Brother

I've been thinking a lot about sibling issues lately.

There is such a fine line between sibling responsibility and sibling resentment. Between nurturing and nit-picking. Between admiration and aggravation.

I know this push-pull is true of the siblings in any family, but when one sibling has a disability, the issues are magnified, the stakes are raised, and the balance is slightly off-kilter.

How do I make sure my older kids are allowed to just be KIDS? When one person can't speak up or tattle or properly defend himself, the playing field is unlevel. Sometimes the games my older kids play with Max just do not look like games from my perspective. Even if they are all laughing, I find myself wanting to stop them and lecture about the functionality of it, the respectfulness of it, the social appropriateness of it. But they are having fun together! And if they are simply doing what siblings do, is it really necessary for me to step in? I encourage the older ones to include Max...but then admonish them when they aren't "doing it right".

And, of course, when left to their own devices, they also come up with some great stuff -- stuff that again, I would never think to do. They are working out what's fun for all, and it's a continual process, I'm slowly realizing, because they are all continually changing.

I can say without hesitation that every one of my kids is tenderhearted and sensitive. I witness how kind and patient they can be with each other, and feel a tremendous sense of pride when they have each others' backs or go above and beyond the call of duty...yet is it fair for me to expect them to? To demand that they do?

I know that Max's older siblings are learning a lot about justice, and respect, and unconditional love, and looking out for others, and rooting for the underdog, and the basic worth of a person, and yada yada yada ad infinitum as a result of having him for a brother, and I am pleased they will start out in the real world knowing these things from the very beginning. Some of us don't figure these things out until much later in life. (Some people never do Get It.) I truly believe learning these lessons will make them better people.

But what about the more negative or painful lessons they are also learning? Does the squeaky wheel always get the grease? Should negative behavior be rewarded with more attention? I know life is unfair, but is it necessarily THAT unfair? -- Are we unknowingly teaching them to be helpless and hopeless? Do you ALWAYS put the other person first, even at the cost of losing yourself?

Will they look back on their childhoods as happy? Will they remember our home as a warm and safe place to be? Will they grow to resent parts of this life? Will they grow to resent their brother? That is one of the scariest questions I know, but the one that is even scarier is this: What is the role I play in each of these things?

The Peanut Butter Fiasco triggered the latest round of introspection for me. My older son was supposed to be watching Max when it happened, and he wasn't. But I also know first-hand how quickly this stuff happens, how lowering your guard for one minute can have a fairly hefty consequence. I try not to place them in positions of responsibility that could have lasting repercussions. I don't want An Incident that haunts any of us; I don't want to open a Pandora's Box of Guilt.

But at the same time, I expect a lot. Having the big kids away at camp gave me a glimpse of what life looks like without them. The interesting thing was, in some ways it was so much harder...and in other ways it was so much easier. That break and distance was good; I feel like I need to re-evaluate how we do things around here a bit.

Even before Max came along and put a whole new spin on things, I tried to raise my kids to look out for the other guy, to step in when someone is wronged, to speak up when injustice exists.

But what if I am the one causing it?

A family is a family; we take care of each other, every single member, simply because we exist. But at what cost? How much is too much? When is it time to focus on the whole, rather than on the parts...and when is it time to perform some maintenance on those parts?

Thursday, July 10, 2008

Microcephaly in the Media: Mr. Robot Man

Here's another one of those pieces of flotsam & jetsam that caught my eye with its microcephalic appearance. His head seems a tad small for such an impressively built body, no?

This futuristic little robot is actually just black and white plastic...but in this picture, I could almost swear that a transparent photo of Max was somehow morphed onto the robot's head behind the white plastic face guard.

Do you see it? Hunh!

Tuesday, July 8, 2008

The Great Peanut Butter Fiasco

I'm not having a good day. Pull up a chair, though I do promise to keep it short.

I made pancakes for breakfast. I fixed a plate for each of the two boys and went upstairs to take a shower, thinking Max's older brother could keep an eye on him while they ate together. I don't normally do this, because it's just asking for trouble...or mess...or choking...or SOMEthing. But the big kids had dentist appointments and we needed to get moving.

I was just stepping in the shower when I heard, "MO-O-O-O-O-O-M!!! Hurry -- COME HERE!!" I could hear the urgency in my son's voice, so turned off the shower and ran downstairs.

This is what I found.

I had been gone for 5 minutes.

Why was Max so messy? Well, you see, we eat peanut butter on our pancakes. The jar was still sitting out. So was the syrup. My older son finished eating his breakfast quickly and went in the other room to watch t.v.

Max kept himself.

I have never seen so much misplaced peanut butter in my life. Globs on the floor, blobs on the stools, smears up and down the front of his p.j.s; it was EVERYWHERE. I couldn't believe that much peanut butter could actually fit in one jar! Scroll back up to that first picture -- that jar, my friends, was BRAND NEW this morning. I broke the seal myself.

Now, to his credit (I guess), Max did try to clean things up. He was washing his hands when I found him. And apparently he had already tried wiping them off on the kitchen hand towel.

I took him into the little bathroom off the kitchen to clean up away from the rest of the peanut butter mess...and he had already done some washing up in there, too!!

In addition to the big plops and blobs, the floor was absolutely covered with little crumbles of peanut butter.
I can't even figure out how it got all the places it did. I mean, he left a very obvious trail, and you don't have to be Sherlock Holmes to piece together where he had gone...but seriously, just exactly how do you get peanut butter on the mini-blinds?!?

It was on the baseboards...

...and also on the oven door.
It was on the window, the window sill, the brick wall...
...and even UNDER the stove??

He must have been flicking his fingers and flapping his hands to get the sticky peanut butter off, flinging the goo hither and yon.

There wasn't even time for me to throw a fit, or yell, or lecture. We had an appointment to get to. I cleaned up the largest plops as quickly as I could, threw Max in the shower right along with me and wiped and soaped and scrubbed (possibly a bit harder than necessary).

I walked right out of the house with the rest of the mess just...there.

With the exception of the pictures Max is actually in, the photos were taken after we returned home. (Yes, that's right -- AFTER the largest blobs were already gone!)

Let me recreate the mess for you in this way: the following is a photo of my kitchen; this is basically what The Great Peanut Butter Fiasco looked like.

We made it to the dentist appointments (albeit a few minutes late).

My daughter has a cavity.

It's POURING outside.

The mess is now cleaned up, and it's way too early for a glass of red wine.

I'm soothing my shattered nerves with an extra mug of strong coffee, chock full of real cream and extra sugar. I am going to go make some sandwiches (TURKEY, thankyouverymuch), and then we are going to go see the Wall-E matinee while eating the biggest bucket of popcorn they sell.

I'm clocking out.

Saturday, July 5, 2008

Max as The Talking Stain

Max has been vocalizing more lately. In fact, he has suddenly started "talking" while I'm talking, in a sort of bizarre mimicry.

I think it started from the two of us singing together. He loves it when music is playing and I start to sing. He joins in with his little high, throaty "singing" voice and just kind of goes all up and down in pitch, singing his gentle song. Well, our singing duets have morphed into speaking duets.

I have to say, it's pretty cute, but I find it really hard to keep my train of thought. If I'm talking to my husband and Max joins in with me for a little tandem talking, well, I keep right on talking and assume he's just trying to be a part of the conversation. (and hide my grin!) But if I'm speaking directly to Max and telling him something important that he needs to hear while he does his duet...well, obviously he's not listening. But it's a start, right?

Remember the Talking Stain commercial that aired during the Superbowl last year? Where the guy is in a job interview, but the stain on his shirt is so distracting that nobody can focus? Well, it's exactly like that!

I googled that commercial so I could add a link here, and discovered that you can actually put your own face on the stain in a mini movie!

Here you go -- this captures the essence perfectly! (Just imagine taking out the hard syllables and lowering the volume.) I have been giggling about this all day: Max as The Talking Stain!

Friday, July 4, 2008

Greetings From Camp Turdalot

The big kids have been gone all week, away at summer camp. Things sure are different with only one kid! Everything is so much quieter, more flexible. We eat when we feel like it, play whiffleball intermittently throughout the day, take movie breaks as needed. Max and I even slept in a few times!

So things have been pretty mellow and slow-paced and easy, kind of like we're on our own little vacation. UNTIL YESTERDAY.

I don't know why, but Max was just contrary and instigating trouble from the get-go. I emailed my mom last night and updated her on this and that...then summarized by simply typing "Max was a turd today."

Now, I started this blog to record important events and stages in Max's life, and also to speak honestly about life as his mom. I actually find myself counting posts to see if I'm getting too many positive or negative ones in a row -- BOTH are accurate and need to be here. There are periods, however, when one dominates. Yesterday was dominated by negative.

While I hate to say something awful about one of my kids where it will be recorded for all posterity, I also know that sometimes you just have to call a spade a spade. And when I look back on this post some day, I'll be able to say, "Ah, yes. I remember..."

Let the record show that on Thursday, July 3, 2008, Max was a turd.

The end.