I am Micro-Managing

I Can't Believe He Ate the Whoooole Thing.

2010-04-01T23:05:00.020-04:00

Max wanted an apple for his after-school snack today.

He's requested apples many times before, but he doesn't usually eat them. (I think it's because of his wonky front tooth. Eating them hurts.) It was also a novel request because 9 times out of 10 he asks for crackers or popcorn the moment he steps off the bus. But today it was if a whole new snack idea had occurred to him. He entered the kitchen and only had eyes for the apples. I got out a knife to cut one into slices, which is what I usually do to make a giant apple more approachable, but he did NOT want me to cut it. He simply took it, sat down at the table, and started eating.

He sat. And he sat.

He ate. And he ate.

If investigators on CSI: Kitchen were trying to determine who was eating this apple, those bite marks would leave no doubt!

He didn't look around. He didn't squirm. He didn't run off. He just sat and ate, with a singular focus.

(Note to self: consider new bowls.)

And he ate.

And he ate.

I tried to convince him he was done with it, that he had eaten all the good fruity parts, but he ignored me.

Finally, he said "Done!"

This is what was left.

*6/3/10 Edited to add: Two months later, and he's turned down every apple offer since. It's a mystery.

Independence

2010-03-30T09:15:00.001-04:00

Independence seems to be the theme this year. Max has made so much progress lately. He has settled. Matured. He's suddenly doing some really exciting things all by himself!

And the flip side of that is that I am becoming more independent, too. We are tied together in so many ways, for so many pieces of daily life. There is a sense of freedom when I am no longer required for something. And I know that's a feeling that goes both ways.

Sometimes his new independence creates more work or mess or worry for me. That's a truth for any child, but perhaps more literally so with Max.

For example, the other day he entered the kitchen where my husband was making dinner and asked for "Help, please." He's been doing this thing with his videos where he wants help to change them or start them or rewind them or adjust the volume -- all things he knows how to do on his own, barring some complication -- because he simply wants the interaction. And every now and then there IS a complication, in which case he really does need help. But it's usually not clear until we go with him and assess the situation. After the bazillionth time, it is something we are reluctant to do. So, when he entered the kitchen with a request for help, my husband assumed it was yet another false video alarm. He refused to go, and sent him off with the encouraging words, "You know how to do it! You can do it yourself!" Max paused, but agreed, and took off down the hall. We found him in his room, gamely attempting to change his own messy pull-up. Ugh.

But mostly the changes have been good.

We finally had a spell of warm weather recently, and the snow melted off the pavement, making our street and sidewalk visible for the first time in months. I desperately needed to get outside and feel the sunshine on my face, and decided to do just that. Without Max. He's been sick, didn't want to go, was happily watching a movie just inside the front windows. He is clearly visible from outside. Our loop is a scant 1/3 mile, with a good portion of it in view of our house & yard. There is no traffic. Our neighbor was outside in his front yard. Max's brother was riding his bike in laps around the loop. I decided it could work. And by all my explaining here, it's probably clear that a) I don't want you to feel the need to call CPS or criticize me, and b) even though there are many reasons it sounded like a workable idea, it wasn't.

I noticed on the 2nd lap that I couldn't see him in the window, and there was no response to my maniacal waving. So I went inside the house to check on him. When he heard me enter the house, he came skittering down the hall from the bathroom, with a guilty look on his face. He was shaking his head no, and hiding his hand behind his back. I assumed the worst in a toilet-y sort of way, but the bathroom seemed fine. Then I noticed the fingernail clippers on the counter. And that is NEVER a good sign.

Sure enough, I asked him what he had been doing and made him show me his hand...

...and THIS! This is what he had been doing -- trying to trim his own nails!

Independence is a tricky thing. It's long overdue, yet way too soon. It's two steps forward, one step back. It's trial and error. It's mess and discomfort.

But I'm trying to remind myself that it's positive. And beautiful. And necessary. For BOTH of us.
Just as long as it doesn't involve clippers.

Sleeping Update

2010-03-28T07:41:00.022-04:00

Sleep Update, Month 4.

1. The new sleeping arrangement continues!

2. Even through a bit of sickness! (It was just a cold, but that is an incredibly encouraging sign. He did wake during the night and needed some help & comfort, but he went back to his own bed each time. That's huge.)

3. Not only is Max sleeping through the night in his own room, but he's also falling asleep by himself, in bed, ALONE! (That one fact might be an even bigger accomplishment than the location, frankly. There have been times when he slept in his own room, or slept through the night in our bed, but there has NEVER been a time when he fell asleep alone.)

4. And if that didn't impress you enough, here's one that will make you fall right off your computer chair -- Max wanted to read in bed and turn off his own light! (It was a passing phase, but must be noted because of the incredible Wow Factor.) He tried it for a few nights, and though we left his room with crazy grins (and a hefty portion of doubt), he actually did it. He looked at his books, then turned off his own lamp, and then went to sleep. That's some beautiful independence, there. (And imitation at its best!)

***

To truly appreciate how far we've come, I had to revisit some posts from the past. Follow the links to see both the illustrated version and the wordy version of our sleep struggle from ONE year ago, and this little story from TWO years ago.

Shattered by Socks.

2010-03-18T09:50:00.022-04:00

This morning was not easy. It's a regular school day, so we were just going through the regular school day routine. It should have been simple, a choreographed 45-minute routine.

Except my husband is out of town. And that changes everything, in Max's mind.

Or maybe that wasn't it at all. I don't know. (Which is precisely the point.)

Max started to cry in the shower. He didn't want to be alone, he didn't want to get in, he didn't want to get out, he didn't want to be wet, he didn't want to be dried. But he was calm again after being wrapped in a towel and got dressed quietly and willingly. I thought he was fine.

And then we got to the socks. I had grabbed a pair of socks from the very end of the supply, and had one sock on his foot when he suddenly realized that it was a pair he did NOT want to wear. Most of his socks are solid white, soft and stretchy, all an identical Max-approved brand. But there are a few random pairs that appear when the laundry is backed up and choice is limited.

Max did not want to wear those socks. They didn't feel right. They didn't look right. They were simply not going to go on his feet today. So I went in search of a new, acceptable pair. I offered two other choices -- tube socks or footies -- knowing he typically disliked both, but they were all that was left. (And some days he's fine with them!) But not today. Today he got upset and flatly refused to cooperate any more. With anything.

I dug through the laundry basket and found yesterday's pair of dirty socks -- the last of the preferred kind -- and tried to put those on him. But he was done. The window of opportunity had already slammed shut.

He cried, he gagged and puked, he scratched his face, and hit his head against the wall. He kept his bare feet far away from me, scrambling sideways like a crab, refusing to calm down or listen to reason.

I kept telling him the bus was coming and he needed to let me put his socks and shoes on. I pointed out that the socks were his favorites. I gave him some time, hoping it would let him push his own re-set button. When that didn't work, I pleaded, I begged, I scolded, I threatened, I reasoned, I promised, I yelled, I wrestled, I pulled & I tugged.

Then I slumped down, defeated & frustrated, buried my face in my hands, and cried.

Max saw this and staggered over to me, his face crumpled and his arms out for a hug. He crawled onto my lap, wrapped his arms around me, and buried his face.

We comforted each other for a moment, and then put those socks and shoes on.

Generally speaking, once the situation is resolved, Max is over it. He forgives, he forgets, he doesn't hold a grudge, he regains control, and he moves on. But the rest of us can't. We're shaken. We're upset. We're bothered, frustrated, sad, resentful, worried.

And today was no different. Max's tears ended, but my older son's started. He waited for his own bus with tears dripping silently down his cheeks. And so my own eyes fill yet again. I tried to talk it through with him, but I'm at a loss myself. I don't understand why it happened. I don't know when it will happen again. I don't know how to prevent it from happening. (We can avoid those socks, obviously, but the reality is that it will be about something else next time.)

Max got on the bus and left for school. He's ready, he knows what to do, and everything makes sense.

But for those of us left in the wake of the storm, nothing makes sense. We don't know what to do. We aren't ready for the day.

I'm throwing away those socks and doing a load of laundry. But beyond that, I'm at a loss...

Come Closer!

2010-03-13T11:14:00.003-05:00

I have a secret to tell you. Well, it's not really a secret...but it's one of those things that I'm scared to say out loud. But I'm bursting at the seams and I need to tell someone! So lean in close and I'll whisper it in your ear....

MAX IS SLEEPING IN HIS OWN ROOM! BY HIMSELF! ALL NIGHT LONG!!

HE'S SLEEEEEPINNNNG!!!!!!!!!!!!!!

(There are not enough exclamation points in the world.)

Truth be told, he's been doing it for several weeks now. So it should "stick" -- right?? But we continue to tip-toe around in the evenings and keep our fingers crossed that he does not regress for any reason. I think that if I let him crawl in bed with me ONE SINGLE TIME, or if he comes down with the flu, or if a butterfly spreads its wings in China, all that progress could vanish instantly. (But even then, I would know that we've made it here once before and we can do it again!)

It took 3 months to get here. (That is, 3 months in addition to the 8 1/2 years of previous work!) For 3 months, we faithfully recorded everything and worked towards this goal with a singular focus. We did not give in. We did not back down. We got creative. We changed some things. We added some things. AND IT WORKED.

I have to add -- a small part of me wonders how much earlier this could have worked, and how many nights of frustration we could have avoided. I don't know. Maybe a year? I seriously don't think it could have happened much earlier than that. And it doesn't even matter now. But I do know this: the time was right and it went smoothly because HE was ready.

There are things we did to help him be ready, but the bottom line is that his changes were more important than ours.

This is big, people. HUGE! (So DON'T EVEN THINK ABOUT IT!!) *tossing salt over shoulder*

Valentine's Day

2010-02-12T06:08:00.000-05:00

I baked giant heart-shaped cookies for Max's teachers and bus drivers while he worked on the Valentines for his classmates. He helped mix the food coloring into the icing and chose the sprinkles, but then moved on to his own project.

I bought supplies for him to make his own Valentines this year: red paper, a variety of heart-shaped stickers, and treat bags to fill with candy. He spent a long time applying stickers and signing his name over and over.

Even though the big kids said they were too old to exchange Valentines anymore, they ended up drawn to the table of supplies and had fun helping him out. All that love stuff may be embarrassing for kids of a certain age, but we ALL enjoy Max's whole-hearted embrace of it. This is a holiday right down Max's alley. He simply LOVES to love. (Plus? Candy! Gifts! A PARTY! It's pure fun.)

Ta-Da! The finished products are ready to deliver. (And Max is ready for bed.)

Happy Valentine's Day!

Rachel

2010-02-10T12:50:00.000-05:00

I have been putting off this particular post far too long. Those of you who know me in real life already know the heart-breaking story I need to tell, but if you happen to follow my blog without that real-life connection, you have been left waiting.

How I wish I had a happy ending for you. But I don't.

Every time I sit down to type it, I am paralyzed by the enormity of the situation. How can the beauty of a child's life be captured in a blog post? How can grief be expressed in html code and jpegs? It can't, of course. It's absurd.

But here's the thing: the internet is what brought us together in the first place. Though Rachel and I never met face-to-face, my life was greatly impacted by that intangible connection I felt to her and to her mom. Our relationship wasn't just meaningless type floating back and forth through modems and cables. It was real. It was significant.

***

When my son was diagnosed with microcephaly, I turned to the internet. That is where I found the most information and the most support; it was where the true experts were -- other parents. An entire community is gathered here, full of information, stories, pictures, acceptance, help, encouragement, humor, wisdom, support. In the hundreds of online voices, certain ones began to stick out to me. They were the ones that I could identify with most closely -- whether from shared experience, compatible perspectives, similar frustrations, parallel goals, or even sanity-saving humor. I found this common ground with Rachel's mom.

Our two kids had many similarities. They were both physically active, spirited, independent, challenging, charming, loving little rascals that had continued to surprise the experts and shatter predictions. We commiserated over the never-ending messes and frustration of challenging behaviors, and cheered together over milestones met & skills achieved. We laughed about the humorous moments, and warmed at the gentle ones.

Rachel was several years older than Max, so in many ways I viewed her as his role model. None of the textbooks or doctors or specialists could predict Max's future, but I saw a new potential path by looking at Rachel. In her, I caught glimpses of what he might look like in 2-3 years' time. Her astounding success with her talker, with letters and spelling, with problem-solving, with cleverness & humor -- it all helped me to believe that every bit of it was possible. That we needed to keep trying, keep working, keep believing the best, keep expecting more.

And Rachel's mom inspired me, too. She made me feel less alone on this journey. She "got" me. She could hear my deepest fears and darkest thoughts, yet always managed to revel in the mystery, and consistently remained her daughter's number one fan. She reminded me to embrace the magic.

***

The other reason this post is so hard to type is because it's really not my story to share. I feel like I am trespassing on sacred ground.

I am hesitant, knowing that Rachel's story is far deeper than I can post here, and far larger than the small points of overlap with mine. I write this out of a desire to proclaim her bright, shining existence and unforgettable spark. I write this to acknowledge the impact she had on me. I write this to remember.

Rachel left this world just as she once entered it -- with her parents by her side, in a hospital room filled with boundless, endless love.

Her funeral was heart-breaking and beautiful, filled with moments of laughter and rivers of tears, abundant love and wrenching grief. I carried away with me a sense of comfort that is created when shattered hearts are bonded together with the glue of community, soothed with the balm of shared love and the gentle wrappings of memory. I also carried away with me a continuing ache for her family members, who are now forced to redefine themselves, to find a way to carry on, to thrive even in the face of overwhelming grief. A piece of my heart remains with them still, as I long to ease their pain.

There is a large Rachel-sized hole in the world. She leaves behind two younger brothers, her devoted parents, and numerous friends and relatives, neighbors and classmates, teachers and students, doctors and therapists, supporters and admirers -- young and old, near and far, past and present. The number of people whose lives have been touched by this one amazing girl, and forever changed as a result, is inspiring. She brought seemingly disparate lives together. She made all of us become better people. She created an amazing community, for herself and for us, and her memory lives on in our hearts.

Waiting.

2010-01-19T12:49:00.003-05:00

A dear friend of mine is in the hospital, at her daughter's side, waiting. Waiting for news, waiting for tests, waiting for results, waiting for miracles, waiting for signs, ....waiting.

Her daughter had a stroke.

My fingers can't begin to understand the import of the words they just typed. My mind can't, either. That is a sentence that simply should not exist.

I can think of little else today as I sit in waiting, my gaze wandering between the quiet stillness of the snow outside my window, and the flame of a candle, lit in honor of sweet Rachel and her fiery spirit, which is burning on the window sill below.

If you are the praying type, please do so.

Wordless Wednesday: Santa Has Been Informed -- Max Wants a Movie

2009-12-23T23:01:00.007-05:00

"Cheeeeeeese!"

A Christmas SURPRISE!

2009-12-15T13:04:00.016-05:00

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!

Back to the Basics...and True Mom Confessions

2009-12-08T08:04:00.008-05:00

Max was sick all weekend and stayed home from school on Monday. It's not often that he and I are home all alone, just the two of us, for an entire day.

True Mom Confession: I sort of like sick days with kids. I mean when they aren't TOO sick and miserable, of course. I'm talking about those sort-of sick days, when they are almost better, but not completely. They're bored from all that time spent feeling lousy and laying around and watching TV and sleeping, so they're totally ready to DO something. But at the same time, they're still feeling kind of fragile. That means they are highly moldable. Snuggle-able. Content. Energy is low, but connections are high. They're glad simply to be feeling better, and suddenly realize they can reap the benefits of all that precious one-on-one time. Don't get me wrong -- my kids get vaccinated and we wash hands frequently and if you have the flu you will definitely not be welcomed here! I'm just sayin'...a slight illness now and then is actually kinda nice. Does that make me a bad mom? (Or just an honest one?)

So anyway. Monday was a day like that. The worst was over, Max was happy, the house was quiet, his usual tv shows had FINALLY lost their allure. It was the perfect day to go back to the basics, where basics equals all those good things I used to do when the kids were little that I don't really do anymore.

The most exciting thing we did was making homemade play dough. Max enjoyed the cooking process (though was very upset that I wouldn't let him stir the burning hot pan of ingredients or play with it immediately), and he had fun choosing which two colors to add to the finished product.

We played with the dough for a long time. Each time his attention began to fade, I pulled out a new trick. Stamps! Knives! Cookie cutters! Look -- PRETEND PIZZAS! He requested that I make violins, which I actually managed to do. Then he wanted me to make his favorite Christmas song. (That one totally stumped me.) I distracted him by making one of his other favorite things, instead -- his name.

This was a good day, illness and all.

Just a nice quiet day with a boy and his mom.

And some play dough.

Having said all that, it's now high time for Max to go back to school.

*Giving him Sudafed and quickly wiping away the tell-tale line of snot as I push him out the door and wave merrily at the bus driver.*

Because here's my other True Mom Confession: I really, really, REALLY love school days, too.

Wordless Wednesday: Chex Mix....for Breakfast?

2009-12-07T12:02:00.004-05:00

(Sure, why not?)

(Yep, corn nuts, garlic salt, and all...!)

(Signing "X")

Sick.

2009-12-05T11:11:00.000-05:00

The string incident should have been my first clue. Yes, Max is sensitive to strings, but such a STRONG reaction should have made me realize he was feeling slightly "off" in general.

Clearly, the runny nose was a second clue. But it wasn't that bad. (As I said, it was clear. heh.)

So there were signs. But none of them was a flashing red arrow.

But then I happened upon this scene:

THAT, my friends, is a Flashing Red Arrow. (As well as one of the saddest little scenes I've come across in a while.)

Max loves his videos with a passion. It's a loud, messy, hands-on, interactive, busy type of passion. For him, watching videos is practically a sport. We are constantly reminding him to pick ONE movie, to turn down the volume, to back up, to sit down, to LEAVE THE BATTERIES IN THE REMOTE, and COME DOWN FROM THERE!

But today he was in a dark room. All by himself. With a barely audible soundtrack from one silently spinning DVD. He was perched on a hard ledge at the far opposite end of the room, quietly rubbing his shirt seams. He hasn't made a single peep, yet the message is loud and clear.

Max is sick.

The Only String We Have to Fear...

2009-12-04T16:04:00.003-05:00

Strings, yarn, dangling ties, long fringe -- they're all banned in our house. The reason is simple; they make Max puke. It's not enough just to keep the offending strings out of his face or away from his fingers, either. He gags on sight alone.

Today I wore a new sweater. (You already see where this is going, right?) I put it on after Max left for school this morning, so didn't give much thought to the draw strings dangling so flamboyantly and offensively down the front. The sweater is a basic gray, zip-up, hoodie type --the kind of thing I often wear -- so I promptly proceeded to forget about it, actually. I wore it all day without a second thought....until Max got home.

I was standing in the driveway to greet the bus, like normal. And he started down the stairs, like normal, but then something changed. He gave me a weird look and then he stopped in his tracks, refusing to budge. I didn't catch on to what was happening, so I moved in even closer to grab his hand and coax him on down the stairs, tugging at him while I rolled my eyes and chatted cluelessly with the driver. Then Max stepped down onto the driveway, turned dramatically away from me, leaned over, and puked. Repeatedly.

Oops.

In that split second, I suddenly realized what the problem was and grabbed my strings, tucked them out of sight, then wrapped my arms around myself to keep everything firmly in place and securely hidden. Max followed me -- warily, at a distance -- into the house while I assured him we were going straight to the scissors to cut those strings off.

Max hovered near the sink (just in case) while witnessing the operation, and then continued to give those strings the ol' stink eye while I quickly photographed them lying on the counter. (What? It only took a second!)

Order has been restored. All is well. Nevertheless, we have officially upgraded our household security alert to Code Orange. We urge you to go about your regular business, but PLEASE, remain on the lookout for any suspicious strings in the area and report them to your nearest authorities! Thank you.

Happy Thanksgiving

2009-11-26T09:10:00.002-05:00

Don't you love craft projects that your kids bring home from school? I do. (Seriously, I do!) I especially love this turkey that Max brought home because I can tell he really did glue those feathers on all by himself.

May your day be filled with thanksgiving & laughter, friends & family....and syrupy waffles. (grin)

TapToTalk for Nintendo DS!

2009-11-22T08:37:00.003-05:00

(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!

Losing My Marbles

2009-11-19T09:37:00.001-05:00

I'm going to tell you about a dream I had last night. Because everybody loves that! (I'm saying that tongue-in-cheek, of course, having finally un-glazed my own eyes after an extremely detailed recounting I was just forced to listen to over breakfast.)

Seriously, I do realize that making you read about my dream is kind of weird, but I'm going to do it anyway. I'll keep it short.

*****
This happened, that happened, another thing happened...and then I found myself leading Max through a crowded balcony to go sit with someone I could see about halfway up. The balcony was in a church, and the church service was in progress. It was very quiet, and we were facing rows of people, and I was trying to make our entrance as discreetly as possible.

Now the thing that made this whole scenario really challenging (and dreamlike, and worthy of repeating) was that Max kept turning into a marble.

The balcony was full of pews and steps and hard, echo-y floors (not to mention all the people with their feet and purses and WATCHING EYES) and my marble just kept rolling out of reach, ricocheting, dropping loudly down the stairs, and landing in the darnedest places. I kept shuffling through areas and reaching under people's seats to retrieve my little marble, and would set it back on track, only to have it roll away once again. I didn't know why my marble wasn't following me better through that maze of balcony, but I kept trying again and again and again.

The entire incident was confusing and frustrating and embarrassing and thank goodness, I woke up.

(Don't really need a dream interpretation manual for this one, eh?)

*****
Incidentally, the photo at the top of this post is one I took a couple weeks ago after noticing the bathroom door wasn't shutting correctly.

Coincidence?

Viola.

2009-11-19T06:02:00.004-05:00

This has absolutely nothing to do with my son or microcephaly or anything at all, really, but I just realized that I accidentally typed "viola!" instead of "voila!" back there. I couldn't help myself -- I HAD to go back and correct it.

But now I have the giggles and almost wish I had just left it alone. I mean, who couldn't use a little laugh as they randomly stumble across that typo over time, right?

I'm thinking about adopting it as my new go-to exclamation. It's clean, it's catchy, it lends itself well to dramatic pronunciation, and it works to express everything from breathless appreciation ("Ooooo, Veeeeohhhhlaaaa!") to an angry expletive ("Oh Vi-O-La!!") -- or even an insult ("They don't know VIT from VYE-OLA!")!

Viola. heh.

Spackle & Patch

2009-11-11T12:30:00.011-05:00

I decided I really need to go back and fill in some of the cracks and holes in this blog. So, I just finished up a bit of site repair and filled in some of those neglected spots with a few old posts I'd been sitting on for no apparent reason. (I mean, other than reasons like...hitting the spellcheck button seemed too exerting, or the post had no ending, or I fell asleep instead, or something.)

But -- voila! I deemed them "complete" and posted them.

Where can you find these virtual spackle & patch editions? Just scroll back.

Or, if you prefer, use this handy dandy guide:

1. We saw chicks.
2. Siblings had issues, part seventy-two.
3. We went to the zoo.
4. Max went to another zoo.
5. Max got a swimsuit.
~~6. We went on vacation.~~ (In progress)

There are a few other posts that I'll be finishing up and adding in real time, because they didn't seem chronologically significant. (So if you notice Max's teeth randomly falling out and re-appearing, or his hair growing with bizarre speed, don't be concerned.) It'll all work out in the end.

Halloween

2009-11-04T08:44:00.016-05:00

Halloween was fun this year. Max totally "got" trick-or-treating this time, and his excitement was rather contagious.

(Plus, he loved his costume -- Steve from Blue's Clues, who else??)

We walked around with him for about an hour. (Or I should say, we followed him for about an hour!) He was on a mission -- cutting through yards, scooting past small children, stomping up porch steps, eagerly gathering treats.

We reminded him repeatedly, "Walk! Stay on the sidewalk! Only ONE! Say 'thank you!'" And though he would forget intermittently, he would get back on track and followed through amazingly well. Actually, the biggest problem turned out to be that whenever he spotted a live flame, he tried to blow it out. (He did manage to at a couple of houses.)

He managed this long walk ALONE -- passed the test with flying colors.

He loved watching the kids walk by, and would get up verrrrry close and curious with the little ones.

Ben's brother and friend posed in character...and Max followed their lead.

The moving decorations were favorites of his, too -- he would try to peek under ghost sheets or stick his hand in the rattling bones or poke the moving eyeball. But we were never far behind and kept him moving along.

He loved this interactive candy bowl. The hand flipped down and startled him again and again.

He was thrilled every time we encountered someone he knew. He was greeted with "Hi, Max!" many times throughout the night, and loved telling everyone he was Steve.

We found Sissy!

Suddenly, Max announced that he was all done. He was satisfied and ready to start eating!

It was a fun night.

Wordless Wednesday: Someone's in the Kitchen with Dinah. UNSUPERVISED.

2009-11-03T22:50:00.006-05:00

Wordless Wednesday: Clipper Danger

2009-10-30T08:50:00.002-04:00

7 vs. 8

2009-10-21T09:44:00.001-04:00

I'm having a hard time seeing Max as eight.

As I watched Max today, I realized that there's a reason besides "birthday grief" that I'm having trouble calling him 8. It's a very simple reason, too.

He looks like a 7.

His body continues to grow (and his facial features do, too), though his head doesn't change much. So there's that. And there's also the fact that the gap between his chronological age and "age-appropriate" behaviors continues to widen each year, so that things that were more easily overlooked in a two-year-old version of Max become glaringly obvious in his 8-year-old self.

When people ask his age now, and I reply, "He's eight," there is a pause that occurs while their wheels begin to spin...and it feels like that pause is now lasting a few beats longer than it did before.

These things are all true, and I could easily go on, but what I'm trying to say is much more literal than that.

I really mean HE LOOKS LIKE A 7!

Seven is all angles and edges and lines and corners, slightly off-balance & a bit awkward. It's long and thin and sharp. It's bendy and tilted and seems to be perpetually aiming somewhere, hurtling towards a vague place just over there. Even in stillness, 7 implies motion. It's hard to capture and difficult to split. It's easily misread. Seven is odd.

But 8? Eight is round and smooth and even. It's perfectly proportioned and bubbling with symmetry. 8 is chubby and full, like babies, Buddha, fresh warm zweibach. It's quiet and still, poised and straight, endlessly balanced, Zen. 8 is easy to dissect and examine, mathematically and visually. 8 is complete, full-circle, finished (twice!) -- and when it gently lies down to sleep, it promises infinity. Eight is whole.

I often look for signs or symbolism that isn't really there. And when I see it, I want to believe it.

So today I'm wondering -- could it really be that simple? Is 8 a sign of things to come?

Magic 8 Ball Wisdom

Birthday Boy

2009-08-22T00:00:00.004-04:00

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

2009-08-20T09:40:00.002-04:00

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

2009-08-14T23:22:00.012-04:00

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!!

2009-08-14T07:56:00.000-04:00

(my mental image brought to life with magical assistance from cornify & picnik)

I think this one pretty much speaks for itself. (grin)

Back-to-School Shopping Excitement

2009-08-13T11:26:00.003-04:00

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!)

Schaedenfreude

2009-08-10T06:37:00.004-04:00

(Subtitled: Oh, Genetics, How You Vex Me!)

I was watching that show about the very large Duggar family ("18 Kids and Counting") and was dumbfounded when the ENTIRE family went along for an ultrasound appointment.

All I could think of was how naive it was to think that the only thing they would be discovering was the baby's sex. And wondering how they would react if the ultrasound showed a complication or serious birth defect. And then I found myself getting angry and thinking it wasn't fair. And then I felt guilty. The End.

The Amish Zoo

2009-07-17T21:38:00.007-04:00

Max's grandparents took him on a field trip to a slightly different kind of zoo this week.

For lack of a better term, we call it "the Amish Zoo." It's a small, family-owned zoo on a local farm, and it's run by the Amish family that lives there. Family members of all ages are involved with the day-to-day operations -- there are children driving the horse & cart, handing out bags of feed for visitors to purchase, and helping to answer questions or provide assistance as needed, right alongside the adults.

It's an interesting little place. And it's funny to think that the novelty of it all for us is just another day on the farm to them. (It's also funny to imagine how happy and industrious Max might be if he lived there. Perhaps there is a lesson to be had here? - Noted!)

Much of the place is one big hands-on, petting zoo area. There are bunnies and fawns and goats to touch and feed and watch.

There was also an area where Max could try his hand at milking a (wooden) cow.

It's a lot easier to just open the fridge.

Max enjoyed ambling along in the cart while watching the animals roam.

(I wonder what the age difference is between these two boys...)

And then they got off the cart, right in the midst of those gentle creatures, with a bag of treats to share. I think the animals were almost as friendly and curious as Max was!

"Good afternoon, Mr. Goat! May I offer you a small amuse-bouche?"

There are fenced-in areas of the zoo, too, and Max & Grandpa made sure the animals in those parts were offered some treats, as well.

Feeding goats is a very ticklish business.

...But the goats were still the most fun!

Slow down, everyone -- there's plenty to go around.

There were a few exotic animals, too. Max was especially excited to see a tiger, as the memory of his last tiger encounter was still fresh in his mind....but that encounter was still fresh in Grammy's mind, too, so they quickly moved on!

No way, Jose!! This pacing tiger is NOT your old friend...and this fence is NOT sturdy Plexiglas. Keep walking!

They wisely decided to stick with the GOATS...

Hand sani-- oops, I mean FACE sanitizer, please!

...which seemed to be a VERY WISE decision, indeed!

*Shakes head in disbelief* (That boy.......sometimes I really am just speechless.)

Snickerdoodles.

2009-07-05T11:23:00.002-04:00

I had Max help bake some cookies today.

I thought I was going to have him roll the dough into balls, but that idea was quickly quashed. (He was into Slapstick; I was into Following Directions.) We met somewhere in the middle, and his job became rolling the balls in the cinnamon sugar coating.

A few turned into snakes (forgot to photograph those before I ~~ate~~ re-rolled them), but mostly he was extremely gentle and eager to assist.

After each ball had been coated with cinnamon sugar, Max put the dough balls on the pan, one at a time. The end result called for a photo.

You know how there are certain scenes that you come across occasionally that make you sort of giggle and ache all at the same time? This was one of those scenes for me. I love this delightful little grouping of cookies-to-be.

(And the pictures that follow? Priceless!)

He was very pleased with his work.

How nobly he restrains himself! How wistfully he eyes them!

Good job, Max! I think cookie baking could become a regular event around here...

Where the Wild Things Are Mesmerized

2009-06-29T10:55:00.012-04:00

Our Trip to the Invisible Zoo, Part 2

(Where the Wild Things Are Mesmerized)

Our trip to the Invisible Zoo was still surprisingly enjoyable despite all the unexpected vacancies. And there were a few critters for us to actually, you know, see. They just weren't stereotypical zoo critters, so it was more like a trip to the farm.

We brushed the goats and touched a giant tortoise. We saw birds and frogs and alligators. (Or crocodiles. I always forget which is which.) We fed fish.

We had been there a couple of hours and had seen most of the things there were (and weren't) to see. Max suddenly stopped walking, grabbed my hand, and said, "Home." He was content and satisfied and tired.

We were heading back to the main gates when I realized we had missed one exhibit. To our delight, it was the tiger -- the one thing we had talked about expectantly! (And a bona fide zoo animal, to boot!)

And that is where the magic happened.

There was some kind of crazy connection between this tiger and my son. I'm still not quite sure if it was a good thing or a bad thing, but it was electric.

First the tiger lazed around by the viewing window, directly in front of us. Max immediately plopped down on the ledge to get closer. (Here he is signing "sleep.")

Though it's not terribly clear in the photos, I assure you there was a thick sheet of Plexiglas in between the two of them. Which was entirely necessary, considering what happened next.

The tiger began to exert his status...with his rumbly "I'm not sure you're taking me seriously enough" roar, swatting his paw, and baring his teeth. It was all aimed directly at my small, fearless son, who did then express a few fleeting signs of fear...but it mostly just ratcheted his excitement level up another notch. He hunched over and turned his back for a moment, in an instinctively submissive pose, but he never once left the window.

I felt like I was watching some primal dominance ritual on National Geographic Channel or something. My heart was pounding, and I kept eyeing the Plexiglas to make sure it was intact. I couldn't decide if it was scarily terrible or innocently magical, or just simply fascinating.

I was completely mesmerized. The tiger never walked away and it flat-out ignored the other kids; it only had eyes for one.

In the moment of climax, Max pressed his forehead against the window, and the tiger bared his teeth and placed his wide-open jaws on either side of that tender little head. (I caught the first moments of that on my cell phone camera and then dropped it because I decided we needed to END THIS GAME. NOW!! Red Alert Level 1, my internal sirens were blaring...)

.....and then, strangely, they laid down side by side, as if some kind of understanding had been passed between them. It was like they had established their own little pack. And the calm was instant.

It was the wildest & tenderest, silliest & scariest, most disturbing & enchanting thing I've ever seen.

That one single animal turned out to be the only one that the zoo really needed.

But I don't think we'll be returning any time soon....that one's gonna last a while! (My heart is STILL pounding -- the whole thing is much scarier in retrospect!)

Happy Father's Day!

2009-06-21T23:34:00.008-04:00

Flashback to 8/21/01.
Welcoming Max.
Our family was complete.

Happy Father's Day

Wordless Wednesday: Summer Sprinkler Fun

2009-06-20T10:34:00.003-04:00

Is Summer School Really Worth It?

2009-06-17T13:23:00.021-04:00

In our school system, summer school is an option offered to most Special Ed students.

(Now that I typed that first sentence, I realize I'm not entirely sure how accurate it is. I do know that Max has always qualified, but I also know that I have pushed & encouraged & requested it during each end-of-year IEP meeting. I also know that when he was still in preschool, summer classes were definitely NOT readily offered or approved and I had to get rather adamant about including him....but I'm assuming that full-day elementary school kids don't have to do much to get in. I suppose it is possible that The Powers That Be simply put some special code by my son's name that means "his mom will push for as much school as possible, so just go ahead and stick his name on the list." I really don't know.)

But here's what I DO know: I argue strongly for it every time, but then I question how worthwhile it really is and even OPT OUT of sessions in the end.

That sounds completely ridiculous, I know. But what sounds good in theory just doesn't always pan out in reality.

Max does wonderfully in school. He thrives on the routine, he enjoys the social component, he is happy to be there, he makes clear and consistent progress throughout the year.

BUT!

Summer school? That's an entirely different creature.

The setting is different, the schedule is different, the faces are different, the "routine" is so scattered and widely-spaced that it never quite takes, and, quite frankly, I can't really see evidence of progress on our end of the thing.

Our summer school is offered in two different sessions, each lasting two weeks, held on two days. Read that carefully, because what initially sounds like 4 full weeks of summer school is actually only 8 mornings. And that's if your child attends both sessions.

In our particular case, we will be gone on vacation during the second week of Session 2, so we opted out of the entire second session. That means summer school for Max lasts a grand total of...four mornings.

Now, if those four mornings were back-to-back during a single week, it would be wonderful. But for a kid who sleeps poorly, eats poorly, and falls apart quickly when his routine is so disrupted, four mornings spread out over 2 weeks is actually kind of awful.

Why did we sign him up? Well, that's easy: Max is the type of kid who would benefit from an extended year program. Furthermore, I want to get him out of the house, with his peers, learning and playing in an appropriate and educational environment. I sign up because I don't want him to regress every single summer!! I sign up because I want the school system to see that there is a need for this type of service, thereby ensuring that they will continue to offer it.

We go into it knowing that along with the benefits will come some costs, and we choose to accept a certain number of negative consequences.

I wish I had more positive things to say about summer school. Oh, how I wish! But I don't.

Max just finished this year's round of summer school and it didn't go very well from our perspective.

Monday, my husband drove him there. (We originally signed up for bus transportation, but when we realized the pick-up time would be 7:10 a.m., we decided it would be easier on Max if he could sleep in a little longer. So, our plan was for my husband to drop him off on the way to work.) That plan didn't work well. Max was resistant to getting dressed, reluctant to leave the house, hesitant to enter the unfamiliar school building, and then had a full melt-down about going into his classroom. There was finally a familiar classroom aide who took him and my husband slipped out around 8:20am. School started at 8:00, so the time saved by sleeping in was then wasted on tantruming. And my husband was late to work. (And really, really frustrated.)

We quickly arranged to put Max's name back on the bus list. The bus really is an important part of the school routine for him. When he sees it pull up in front of the house, he knows exactly what's happening next and that predictability is comforting. He loves the driver, enjoys the ride, and definitely benefits from the cue the bus provides. Even with the early morning hour, we decided it was worth it after all.

So on the second school day, we got up at 6:30am so Max would have time for a nice hot shower, and semi-leisurely dressing and breakfasting. The morning went pretty smoothly, though he refused to eat a thing (no surprise there). And then the bus came at 8:00. To take him to his 8:00 class.

I'm not terribly uptight about schedules; I'm not worried about 10 minutes here or there, even though it does make the morning bus time somewhat unpredictable. On the other hand, 50 minutes is completely ridiculous.

I don't know what time the bus arrived at school, but obviously it was very late.

Max came home all wound up, excited about the bus (and probably happy with his school experience),...but also kind of wild and edgy and, most certainly, hungry. Bouncing back from a morning twist like summer school takes a long time for Max. He stays a little "off" all day, and we basically factor in a certain amount of uncooperativeness, overstimulation, neediness, etc. for those days.

And then when it all happens again 2 days later (just when we're back on track!)...well, the better part of the week is kind of a bust.

We got the bus figured out, and they came at a more reasonable and predictable time the last 2 days of school, so Max could sleep in a little bit longer. But here's the thing that absolutely killed me: both of those mornings, he slept right through the alarm and the noise and the door creaking and the footsteps leaving him all alone in bed. We had to wake him up.

For the FIRST TIME IN 9 MONTHS, HE SLEPT IN! ALONE!! IN HIS OWN ROOM. IN HIS OWN BED. This has been our goal since last August. And the day it finally happens? We wake him up.

I can't even tell you how frustrating that was; I seriously considered calling him in absent.

He came home grinning and waving at the bus. He told me had crackers at school. He brought home a stack of worksheets he had done. But that's literally all I know.

I don't know how big the class was. I don't know who his teacher was. I don't know what they worked on. I don't know if he wore pull-ups or underwear there. I don't know anything. The first day he came home with a note that said, "Max had a good day." And while that was comforting to know, since the part my husband experienced was terrible, that's just not enough.

I think if I wrote questions or sent requests for information, I would get some. But I also thought it would automatically come to me without a request. My kid is nonverbal. I'm not there. He rides the bus, so I don't drop him off or pick him up; there is no verbal exchange taking place at those times, no sizing up of the situation, no introductions or greetings, no first-hand knowledge of anything.

I know budgets are tight. I know staffing issues exist. I know I should be grateful for the program that does exist, instead of picking it apart and criticizing. But I really think there has to be a better way to do summer school for our kids.

I KNOW there would be a way to make it work better for my son.

I have asked about the possibility of sending him every day Mon-Thurs for ONE week only. (There is one group of kids meeting Mon/Wed, and another group of kids meeting Tues/Thurs. for those two-week sessions.) He would attend the same number of days (4), but it would be chronologically more predictable for him. This request was turned down; it would throw off the numbers, and his classmates would be completely different from day to day. (Both valid points.)

I asked about sending him all 4 days for TWO weeks, thus condensing his hours from two sessions into one session. This would keep his presence consistent & predictable throughout one entire session, so appropriate staffing could be arranged. And though his classmates would still alternate from day to day, there would be some overall consistency (kind of). This request was turned down, too. It was no surprise, but I still had to ask.

I get it. I really do see their side of things. I do!

But is anyone listening to our side?

Surely I'm not the only parent who finds the current schedule hard to work with. Surely my son isn't the only child who had difficulty adapting to it.

It just seems like there should be a way to make this work more effectively -- for BOTH sides of the program.

Wordless Wednesday: His Plate Runneth Over...with LIQUID GOLD! !

2009-06-17T13:21:00.001-04:00

(waa!!)*

*"waa!!" is a sound effect, not a word...right??

Meltdowns.

2009-06-14T10:04:00.026-04:00

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!

2009-06-11T09:45:00.001-04:00

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!

Ready to Work.

2009-06-09T09:47:00.004-04:00

Max loves to be outside. He also loves to be a part of the action. Therefore, doing yard work is a good summer activity. (Not terribly efficient...but still good.)

Today Max's sister was working on a planting project. Max watched her put on an old t-shirt & pair of shoes, find a hat, and locate a pair of work gloves.

Then he disappeared for a while and came back out dressed to help:

A Classic.

He was quite pleased with himself and ran to her corner of the yard, shouting, "Hih-hee! Hih-hee!" ("Sissy! Sissy!") and grabbed a shovel to help. She loved it.

Max and his beloved "Hih-hee"

Signing Time Swimsuit

2009-06-04T10:56:00.007-04:00

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!)

That Time When He Broke the Glass Door & Nearly Got a Trip to Vegas

2009-06-03T08:29:00.002-04:00

This past weekend was a rough one for Max, physically speaking.

He actually had a pretty good weekend, emotionally speaking. It's important for me to note that, because it really was a pretty mellow couple of days. Max wasn't trying to stir up trouble. Things just...happened.

We spent most of Friday outside, soaking up the sun and working in the yard. Part of the yard work involved moving a pile of bricks that was stacked right in the corner of the patio, just outside the back door. Max was in and out of the house all day long, and managed to avoid the bricks each time but one. He tripped over a single brick, barefoot, and got a cut right on the tip of his toe.

Ooof! Ouch!!

I did lots of scrubbing (and a quick pedicure!) on those dirty little summer feet, but there was just no good way to clean and wrap that wound! Have you ever tried to bandage a child's pinky toe? It doesn't really work.

After several failed attempts, I finally had a small turban of bandaids carefully fixed in place, and had Max sit and watched a movie to keep him quietly still.

After a bit, he came to me and pointed at his toe, saying, "Ouch!" The bandaids were off, and the entire flap of skin was gone. It made me wince to realize he had pulled it right off! I know it probably felt better that way, but I certainly didn't have the stomach to do that myself! (That's another of Max's quirks: his pain tolerance is quite high, but his tolerance for things like hangnails, jagged nails, and flaps of skin is quite low.)

So the next day was a little tricky because he was clearly more comfortable barefoot, but that left his feet quite vulnerable (and led to a few red polka-dotted trails around the house).

I tell you about the toe because we had been exclaiming over his injury all weekend ("What a way to start the summer!")...and also because his barefooted vulnerability became both extra-important and completely irrelevant on Sunday morning.

Sunday morning, Max was having a hard time starting his day. He wanted something, but couldn't tell us what, and wouldn't point or lead us to it or provide hints of any kind. He got increasingly frustrated, and so did my husband & I. We finally told the other kids to just take him outside and play, thinking the distraction, or change of scenery, or jumping on the trampoline would help center him.

He ran out the door after them, and in one last burst of anger, he BANGED the glass pane on the screen door really hard as he went out...and it shattered.

His hand went clear through the glass, and he kept right on going, flying barefoot down the step and right through the falling shards.

Was there silence? Was there screaming? I actually don't recall. I only remember the tinkling sound of all that shattering glass.

My husband got to him first, and whipped off Max's shirt (long-sleeved, thank goodness!) to survey the damage. His hand and forearm were already bleeding and there was one small piece of glass in the bottom of his foot, which he pulled out immediately. We couldn't tell right away how serious the cuts were, but there was a lot of blood and it certainly looked terrible.

My husband held Max's foot up in the air to slow the bleeding, and I held the shirt tightly around his arm. We yelled at the big kids with instructions to run around the house and unlock the front door, get paper towels, and CALL GRAMMY! (My mom is a retired nurse and lives minutes away; she is our own personal 911.)*

She arrived in record time and helped us assess the damage...which actually turned out to be surprisingly superficial! I thought for sure we would be heading to the E.R. for stitches, but there was no need.

My mom brought over an arsenal of medical supplies, and we washed and cleaned and medicated and bandaged his injuries. Max was a bit resistant, but once we told him the large pads and wraps were Grandpa's (left from his surgery incision care), then Max was into it. He kept saying "Pah-Ah" and "BIIIIIIG!" and pointing to his own back and nodding. He knew what they were for, and he loves to do anything just like grandpa!

Once Max was all cleaned up, we dressed him in long sleeves, long jeans, long socks, and soft shoes -- anything to add a little extra layer of protection for the rest of the day! He didn't want to wear shoes very long, but everything else stayed in place until bedtime despite the warm weather (which tells me he was hurting).

We were all a bit shaken by the event, and I still can't believe how incredibly lucky he was to avoid more serious injury. No deep cuts, no stitches needed, no arteries involved (Gah!!) -- nothing!

We aren't particularly lucky people. (In fact, my husband always says about me, "If it weren't for bad luck, you'd have no luck at all.")

Max, on the other hand, is gold. He has had so many close calls and unlikely saves in a variety of precarious situations.

Since starting this blog one year ago, I can point to incidents where he broke one window with a bat and another one with his hand, and only has a single small scar on his thumb as a result. (There was also the time when he very nearly ate a piece of glass in a situation where I did the breaking!) And in the 6 years prior to blogging, there were many other lucky breaks.

It's a wonder.

Once Max was safe, my husband & I were standing there, examining the mess and shaking our heads in amazement. After surveying the damage, he turned to me and said, "I think we should buy that kid a ticket to Vegas. All he needs is one quarter..."

Instead of buying that plane ticket, we opted to put a sizable chunk of money towards a brand new screen door. It's one with a permanent sturdy support bar across the middle, and tempered-glass SHATTERPROOF window panes. I think that's probably an even better way to play the odds. (Don't you?) After all, it's only the first week of summer.

*****

*Mom -- THANK YOU, THANK YOU, THANK YOU!!

First Grade Music Program

2009-05-28T08:42:00.001-04:00

You are looking at a picture of the first grade music program at my son's school. The songs were all about gardening, and the principal came out in between songs to weave it all into a storyline with a bit of dialogue. Each class was dressed for their part as either farmers, weeds, birds, or flowers, and the stage was decorated with flowers each child had made. It was quite a production!

Max's home room is a K-2 Functional Skills classroom, but he joins one of the regular 1st grade classes for "Specials" (Art, Gym, Library, and Music) once a week. So for this night, Max was not a Special Ed kid; he was simply a Special Music kid. He was just another 1st grader.

It's hard to put into words just how beautiful it was to see him up there with all of the others, fully participating in this special event.

I suppose I should clarify that statement. He didn't fully participate in the literal sense. He actually did more of the choreography at home (and in the rehearsals, I'm told) than he did on stage that night. He mostly just stood quietly during the program.

Nevertheless, I still consider his performance a big success! Because in a stage full of 1st graders, there are many who are restless & wiggling, distracted by the crowd (or their neighbor), letting their hands & eyes wander, "singing" with unmoving mouths -- and I'm telling you, he fit right in!

No. Actually, he did better than fit right in: he stood there the entire time, calm and mature 100% appropriate. And while I would have loved to see him really swing those arms and dance a wee bit more, we were just as proud as could be.

Here's the one to watch.

This video shows a clip of Max's class (the farmers) doing their Hoe Down song & dance. I giggled -- and discreetly wiped tears -- throughout. It was fabulous.

Max was proud, too -- he clapped & clapped after each song, and when the program ended, he was full of grins and hugs and posing for pictures.

Max & his dancing partner.

Max & his biggest fans -- his classroom aide and teacher.

Max & a friend posed for pictures...and then admired their handsome selves on the preview screen.

Way to go, Max! You did it! (High fives all around!)

School's Out!

2009-05-22T12:35:00.012-04:00

(Ooo, icy treats!)

Today was the last day of school. Max's bus driver had a big hug for him when she dropped him off today, along with popsicles for all the kids.

Max's teacher sent home some parting gifts as well, including these wacky glasses. (Remember last year's pair?)

Goober.

I'm ready to be done with the early morning rush and think Max is getting pretty tired in general -- he could use a few extra minutes of sleep each morning. But I think we're both gonna miss the structure those days provide for him.

And the meals! Oh, those lovely school lunches...I will miss them greatly. (If you have a kid who is a messy and distractable eater, and then throw in a few sensory issues on top of that, you know exactly what I mean.)

The end of school always brings with it a sense of satisfaction for me. We completed another year in the journey. Max successfully navigated the 1st grade classroom system, another set of skills has been gained, and progress continues.

Can Anybody Else Hear That Ticking Sound?

2009-05-21T13:17:00.003-04:00

Tick - Tock. Tick - Tock. TICK. TOCK. TICK!! TOCK!!

Can anybody else hear that ticking sound, or is it just me? Today is the last full day of school before summer vacation begins. I really think the second hand of the countdown clock is even louder for me than it is for the kids.

Am I the only parent who is NOT ready for school to end? Am I the only one who visibly cringes at the thought of those lazy days of summer stretched endlessly before me?

No time to dwell -- (I can hardly hear myself think, anyway) -- the ticking's getting louder even as I type!

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

2009-05-20T13:22:00.169-04:00

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.

The Great School Picnic Debacle, Part III

2009-05-18T21:55:00.005-04:00

It's like deja vu all over again.

Exactly one year ago, I was fretting and stewing about attending Max's end-of-year school picnic.

But this year, I decided not to do that.

I heard glowing reports about last year's picnic, for one thing, but also I know it is important to be a familiar presence in my son's school. I want to meet his classmates and their parents, thank his teachers, and observe Max in his element. In return, I also want all of them to see Max in his context -- to see the loving family behind the kid. (though I whisper that very quietly, while holding my breath and crossing my fingers in hopes that we would actually appear as such!)

To be clear, I was still dreading many things about the event -- the actual picnic buffet itself, in particular! -- even though Max has matured & mellowed somewhat over the past year. But the memories of last year's angst coupled with the promise of friendly, familiar faces and thrills galore (bounce house, dunk tank, and PETTING ZOO!?!) erased all doubt. We would attend! Of course we would!

As the date drew near, we realized the older kids each had other activities and places to be that night, but my husband & I still agreed to take Max to his picnic. I was invited to a friend's house that night, too, and I replied that I would be there....right after Max's picnic.

So we were ready and willing. Optimistic, even!

And then it began to rain.

It sputtered around, starting & stopping & starting again throughout the late afternoon. The original information sheet sent from school listed an alternative date in case of rain, so it seemed quite likely that the picnic would be postponed. I checked the school's website to verify a cancellation but didn't see anything. (My husband told me to just call the school and ask, but I didn't want to be one of those people -- people who didn't have the common sense to simply LOOK OUT THE WINDOW -- clogging up the phone lines asking that very same question.)

So I just kept watching the weather channel radar and scanning the skyline...and finally it began to pour. It was a soaking, drenching rain. The kind with distantly rumbling thunder. The kind with dark skies and no end in sight. The kind that is clearly NOT compatible with picnics. I finally put on my Captain Obvious hat, turned to my husband, and declared the picnic cancelled.

Fast-forward to today.

Today I stopped in the office to pick up Max for his weekly Speech Therapy appointment.

"So the big picnic will be on Friday now, right?" I said conversationally to the school secretary while I was waiting.

"Oh, no, we had that last week!" she answered.

And then my brain fell out and I sputtered something about rain and rain dates and postponing and huh??

Right then the principal walked through the office and said, "Hey! We missed the life of the party at our picnic last week!"

And then my ears melted right off my head and I sputtered something about weather channel and radar and plans and RAIN!! DATES!!

Apparently the school sent home a paper the day before the picnic, announcing that everything would take place as planned, regardless of the weather. They would simply move into the gym if it rained.

The paper was not sent home to me. (It's true. The oversight was confirmed.)

So....here I am once again in this oddly annually familiar place: slightly relieved that we avoided the whole crazy picnic scene, slightly guilt-ridden that I feel that way, slightly saddened that we missed it, and slightly comforted by the knowledge that I did, at least, have the right intentions.

I am heartened to realize, too, that while this place is familiar, it is not identical.

We are both, Max & I, one year older, one year wiser, one year matured, and one year further along the path.

The path to where, you ask? Well, I'm still not exactly sure where this path goes, actually, but we seem to be on it (mostly), meandering along. I can tell you this much about the path today: The landscape is similar, but I'm pretty sure we're in a different county now. (Yes, you read that right: county, not country. Baby steps, folks. This trip is gonna take a while.)

Sometimes when there's a bump in the path, I scream at the lousy, inadequate map and threaten to quit....but sometimes there's a bump in the path (like a school picnic debacle, for example) that allows me to stop and catch my breath while I gaze back in amazement over all the miles we've come.

Tonight I'm kind of amazed. Picnic, Schmicnick. The REAL story here is that I caught a clear glimpse of progress when I wasn't even looking for it. And that's a thing worth noting!

So to Max, I say, "You've come a long way, baby! Way to grow! I'll get you to a picnic one day soon."

To myself, I say, "Hey, you -- you've actually come a long way, too! Keep on keeping on. Remember, even baby steps start to add up!" And then I hum a little of Dori's song ("Just keep swimming, just keep swimming....").

And to the picnic, I say, "Too bad about the mix-up. Maybe next year?? Because I really think you're special. CALL ME! Bye."

A Tiny Adventure: Chicks!

2009-04-20T22:49:00.004-04:00

We stumbled across a great outing yesterday.

Slow & gentle hands....with firm support from daddy.

We were driving past a farm supply store and noticed the marquee announced "Chick Days!" I was completely hooked and insisted we return. I knew the kids -- Max, especially -- would like it.

There were several giant galvanized troughs filled with a variety of fluffy little chicks, and a sprinkling of ducklings thrown in as a bonus.

They were at the perfect level for viewing -- and touching!

The noise the chicks made was delightful -- loud, yet gentle. We all oohed & aahed and giggled as we watched them scurry around and then hunker down in sleepy heaps.

(One day she will understand why I comment on her nails. Heh.)

The kids enjoyed picking out their favorites and were thrilled to hold them.

Thrilled, I tell you!

Max could have stayed all afternoon, I think.

And now I must include a video clip here, because though the still photos are cute of the kids, they don't even begin to capture the cuteness that is a bin full of peeping chicks!

(See what I mean??)

Autosomal-Recessive Bathtime Vocabulary Quirks?

2009-04-19T09:20:00.000-04:00

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!

A Valiant Effort

2009-04-12T23:42:00.027-04:00

As you may have heard, we've had a slew of sickness passing through our household. Max was down with a fever for several days, but mostly just seemed to have a very nasty cold.

Among Max's quirks are the facts that he doesn't like to cough (something which is difficult when one does, in fact, HAVE A COUGH) and that he is very gaggy (something which is magnified when obscene quantities of mucus and drainage and phlegm are, in reality, DROWNING ONE'S UVULA).

Gulp. I gagged a bit myself just typing that sentence and thinking about all that goo. Sorry. I'm just trying to set the stage for today's story. Ahem. Moving on!

To give him credit, Max has matured to the point where he has better control over his gagging. Well, actually not over gagging per se, but over his gagging to the point of puking. When The Look comes over his face, we can sometimes shout "No Puking!!" and he will actually stop (and then do a big gulp). Sometimes he can't stop, but he will run to the sink first, which we consider no small triumph.

So anyway, that nasty cold led to frequent gagging and puking. And sneezing! And Max did a great job of running to the sink when he was near it and needed to puke....but he forgot that it is dangerous to sneeze when one's face is so close to a counter's hard edge.

He sneezed his face right onto the edge of the counter.

More than once.

Poor guy. As if he wasn't miserable enough, he now has a split lip, too.

It was a valiant effort, though.

Duality

2009-04-07T22:37:00.008-04:00

The kids are on Spring Break from school right now...though it hasn't felt very celebratory or fun so far. Everyone's been sick. Everyone -- my husband and all three kids. The boys have been sick enough that they are accepting of endless days laying around on the couch, flipping channels and dozing. But that's not completely accurate; Max would be accepting of that most any time -- provided a loved one is sitting next to him. What I should say is that he hasn't asked to go outside or tried to initiate any of his usual little games, and there have been fewer smiles and giggles (and more tantrums) than usual. That's more accurate.

He's surprisingly tolerant of illness. He doesn't like to cough, though, and refuses to breathe through his mouth when his nose is stuffy. So you can imagine how frustrating that can get. But otherwise, he just gets tiny. He needs extra holding and snuggling and less talking. He doesn't complain; he just carefully shushes me with a finger to his lips and shakes his head "no" very seriously and small.

That's the thing about not being able to communicate his feelings to us. There's no whining or moaning or dramatic complaints about sore throats or earaches or nausea.

But also, that's the thing about not being able to communicate his feelings to us.. There's no whining or moaning or dramatic complaints about sore thraots or earaches or nausea. How do we know?

And there it is: the first duality. It's the flip side of the coin. He is pleasant about his illnesses, but we are left with little clue as to the nature of his illness!

I've been thinking about this duality thing lately. It seems to be such a recurrent theme in life with disability.

Having a child with a disability brings such extremes. The highs are HIGH; the lows are LOW. The celebrations are joyous; the mourning is heartbreaking. It brings out the best in you. It brings out the worst in you. It solidifies the strengths in your marriage. It chisels away at the weaknesses in your marriage.

But I also see this duality in Max himself. He is cognitively impaired; but he uses the atypical brain he has with genius. And it seems he swings behaviorally, too: he is happy or sad, awake or asleep, smiling or crying, silent or loud, together or apart.

He knows his body well enough to run to the kitchen sink when he starts a gagging coughing fit. But he is surprised by his body every time he sneezes while standing there and hits his head on the counter's hard edge.

He fidgets and moves and jerks until suddenly he is asleep, as if a switch was flipped.

He's together or apart. Sitting at the table while I make supper is apart. None of that "in the same room" stuff for him. He wants to be in the same airspace. But being in a completely different room can be acceptable.

He's happy or he's sad. It changes from moment to moment, but there aren't grudges or resentments or residual annoyance. He cries to have his nose wiped, but then is over it and the offense is forgiven.

He wants to be held, but he doesn't. He wants my hand "here", but then he wants it "there". I've been holding the image of Dr. Doolittle's Push-Me-Pull-You in my head lately.

So the sickness is hard. Because I can tell -- now -- that he is sick. But I don't really know HOW sick. And there was a fairly sizable gray area early in the week when I wasn't sure if he was sick or not. He pukes or he doesn't; it's rarely due to illness. But then sometimes it is an obvious sign of illness. He eats or he doesn't; it's dependent on any number of things, the combination of which we've never entirely deciphered. It's not always about hunger.

So here is what I've been laying here puzzling over: if everything is so black and white, why is it so hard to figure out what's wrong???

It's just not always clear.

Dr. Seuss's AACs

2009-03-24T16:41:00.003-04:00

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?

Wordless Wednesday: Spring Has Sprung!

2009-03-17T11:56:00.002-04:00

One Theory About Why I Have Insomnia: The Wordy Version.

2009-03-15T08:45:00.042-04:00

This is the wordy version.
(Click here for the illustrated version.)

I've been having a lot of trouble sleeping lately.

The irony is, even though I am not sleeping well, Max is! Recently he's been not only ready to go to bed, but actually requesting to go to bed. This is huge. Really, seriously huge.

I've often heard that sleep issues are common in kids with microcephaly, and that some of those issues often resolve with maturation. It's been nearly 8 years in coming, but I do believe we are finally witnessing a bit of that long-awaited maturation kicking in!

There's only one small problem with Max's new chosen sleep routine: it involves me.

That sounds terrible, I know. But he really is picking the wrong person; I am a very light sleeper myself. (Plus a bit of a night owl; I love to putter around in the evening when the house is quiet.) Going to bed at 8:00 p.m. is really cramping my style. And his bony knees & elbows and highly regimented positioning are really cramping my body.

Plus, he has a lot of rules. He must rest his head on my left shoulder, with his head tucked under my chin or pressed firmly into my cheek. (This explains the adult acne newly infesting the left side of my face and neck. He's really warm.) His legs must be wrapped over mine to fall asleep, though occasionally it is acceptable to simply have his feet tucked solidly under my legs. His legs must be drawn up in a tight fetal position, and his knobby knee knobs must then maintain contact with some part of my body at all times. (Until about 3am, when he suddenly needs to stretch and straighten and flex and push, clear down to his toenails, using my slumbering body as resistance.) Finally, the sheet and blanket require a good bit of arranging and fluffing and adjusting and pulling and tugging and flipping until they meet his exacting standards. Once those are adjusted correctly, he then begins the bodily adjustments all over again.

He essentially keeps bustling around and fidgeting until suddenly he is still, and then -- just like that -- he's asleep. I think that is why the phrase "fall asleep" was started; some people really do just abruptly fall into it. (Picture a child running and jumping around the edge of a deep hole, and suddenly he makes a misstep and vanishes. Whoosh -- asleep!!)

I generally lay there and try not to move or breathe or blink wrong. (And to ignore my aching left shoulder.) I am developing a curiously detached mind; I am not really there, but rather walking myself through lists, or re-hashing old conversations, or recalling everything I've ever done wrong in my life....and then trying to quickly backtrack and think about rainbows and fuzzy kittens instead, which doesn't always work. (Because as we all know, rainbows are just a trick of light and there is no pot of gold, and kittens just grow up to be smelly cats that shed all over and pee in the corner of your closet!) Let me tell you, there is something about laying there, captive (not captivated, just captive), while the rest of the world is watching tv or quietly talking or reading a book or playing games or slumbering peacefully (or even heading out for the night!) that leads the mind to negative territory and a general feeling of persecution. Instead of feeling well-rested and caught up on sleep, I am simply becoming more and more irritable. It's ridiculous.

Once he is soundly asleep, I feel my mind heave a big sigh of relief and the earth begins to rotate again.

The bizarre thing is, once he's out, I can flop him and move him and position him and roll over on him, and he will remain asleep as long as I stay beside him. HOWEVER, if I attempt to exit the bed -- say, for example, I slip out of bed to go to the bathroom? -- then he's instantly awake and coming to find me. His eyes aren't even open, but he's upright and moving. It's like he has a 6th sense.

Or maybe he is a heat-seeking missile. He is locked in on a target and does not veer. (And in case you think there is a literal clue in that analogy, we've already considered that. We've tried extra blankets, warmer pjs, piles of pillows -- even the mom-scented-blankets that are so often recommended for babies -- but they don't work.)

So I stay there. In a bed that I wasn't quite ready for, which makes it hard for me to fall asleep. I do sleep during the wee hours, though I have come to rely on melatonin, Benadryl, or NyQuil for assistance.

I wake up early, too, and when I cannot play possum for one more minute, I try to sneak out. He immediately sits up, rubs his eyes and grins at me, and signs "coffee." And so another day begins for one happy, well-rested boy...and his cranky, un-rested mom.

I'm telling you, all this extra sleep is exhausting me!

One Theory About Why I Have Insomnia: The Illustrated Version.

2009-03-15T08:31:00.000-04:00

This Is the Illustrated Version.
(Click here for the Wordy Version.)

THE END.

(Only not really, because it's still THE MIDDLE OF THE NIGHT!)

***

(P.S. Yes, I trim his toenails. I'm beginning to suspect he's hiding crampons under his pillow.)

You know -- CRAMPONS?

Meanwhile, Upstairs at the Ranch...

2009-03-10T17:13:00.004-04:00

It's time for another episode of The Story Behind the Story. This one is called What Max Did While We Were Painting in the Basement.

Getting projects done around here often involve a few extra steps. Outside yard work goes pretty well with Max around, but inside jobs -- especially messy ones like painting -- just aren't always compatible.

We scheduled a full day of activities for him with his grandparents (both sets) during the really long marathon day of painting. But during the shorter afternoon of touch-ups and finishing, my husband and I both painted in the basement while Max was upstairs with his older brother. We set him up with a video and left his brother in charge with two basic rules: Keep him upstairs & Keep him safe.

Max actually stayed upstairs the whole time. I was pretty impressed and asked what he did to stay busy....and then looked around and realized the evidence sort of spoke for itself.

Here's a little peek. Can you figure out what Max did while we were painting?

"I Love You" Hand Sculpture

2009-02-28T09:33:00.000-05:00

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)

2009-02-13T17:22:00.002-05:00

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. :)

Wordless Wednesday: Headband Games

2009-02-05T17:44:00.004-05:00

(Subtitle: Who knew $1.29 could provide so many hours of sensory fun??)

On Vacation...

2009-02-01T16:17:00.002-05:00

I forgot to post this before I left to let you know I was going away on vacation....and now I'm already back! And a lot of stuff happened there in the middle part, while I was gone.

If I can get warmed up enough to thaw out my freshly re-frozen fingers, I will type about it sometime. But for now, I'm just gonna go snuggle with my talented little illustrator instead.

(I missed him!)

Game ON!

2009-01-18T11:20:00.003-05:00

I just walked into the kitchen and found Max holding something in his hand. He jumped a bit when he saw me and then started quickly signing "thank you" and saying it ("Aah oo! Aah oo!") repeatedly to me.

Obviously, he was into something that he KNEW might be a problem...

Turns out he had an entire chocolate frosted donut in his hand. (And on his hand. And on his face. And in his mouth.)

I actually had to admire his quick-witted thinking to turn on the charm and thank me in advance, and told him he could have it IF HE SAT DOWN AT THE TABLE TO EAT IT. (Sitting at the table for an entire meal or snack remains a challenge for him.)

Well, darned if he didn't do exactly that.

He sat. On his stool. Straight and still. Quiet & focused. No banging, no kicking, no grabbing or spilling. No claiming he's done and running off.

My husband walked in and stared at him for a bit, then looked at me questioningly.

"I know," I said, "I know."

OK, Mister. You just raised the bar. A LOT!!

Game on! It's eatin' time.

(See how I slipped in an entire fruit plate along with some healthy tangerine slices?? Didn't work.)

The Prince and The Tooth: A Modern Tale

2009-01-12T13:09:00.001-05:00

Remember the classic tale about The Princess and the Pea? Well, we've been living through a slightly different version of it these past few weeks...

The Princess and the ~~Pea~~ Tooth
by Hans Christian Andersen & Jujyfruit
Illustrated by Edmund Dulac & Jujyfruit

There was once a prince, ~~and he wanted a princess, but then she must be a real Princess. He travelled right around the world to find one,~~ but there was always something wrong. There were plenty of princesses, but whether they were real princesses he had great difficulty in discovering; there was always something which was not quite right about them. So at last he had come home again, and he was very sad because ~~he wanted a real princess~~ his tooth hurt so badly.

One evening there was a terrible storm; it thundered and lightninged and the rain poured down in torrents; indeed it was a fearful night.

In the middle of the storm somebody knocked at the town gate, and the old King himself sent to open it.

It was a princess who stood outside, but she was in a terrible state from the rain and the storm. The water streamed out of her hair and her clothes; it ran in at the top of her shoes and out at the heel, but she said that she was a real princess.

'Well we shall soon see if that is true,' thought the old Queen, but she said nothing. She went into the bedroom, ~~took all the bed clothes off and laid a pea on the bedstead:~~ then she took twenty mattresses and piled them on top ~~of the pea,~~ and then twenty feather beds on top of the mattresses. This was where the princess was to sleep that night. In the morning they asked ~~her~~ how she slept.

'Oh terribly bad!' said the princess. 'I have hardly closed my eyes the whole night! Heaven knows what was in the bed. I seemed to be lying upon some hard thing, and my whole body is black and blue this morning. It is terrible!'

They saw at once that she must be a real princess when she had felt the ~~pea~~ tooth through twenty mattresses and twenty feather beds. Nobody but a real princess could have such a delicate skin.

So the ~~prince took her to be his wife, for now he was sure that he had found a real princess, and the pea~~ tooth was put into the Museum, where it may still be seen if no one has stolen it.

Now this is a true story.

THE END
(source)

The Museum Display

The Movie Version

Wordless Wednesday: Guess Who Got a Haircut?

2009-01-07T08:55:00.007-05:00

Menards, Mangers, Maxes, Meaning, and Material Miscellany

2008-12-17T22:40:00.021-05:00

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.

More Imaginary Dancing (a.k.a. Elf Yourself!)

2008-12-10T06:30:00.003-05:00

Here's a little something seasonal for you to enjoy, from Me and My Shadow! (If you take away the tap shoes and add a Christmas theme, it's actually very similar to the image I had in my head when typing my last post...HA!)

Send your own ElfYourself eCards

Me..(2,3,4)..and (tap)..My (tap)...Shaaaaaa-DOW! (clickety-click-y-CLACK!)

2008-12-07T11:00:00.002-05:00

Could you tell I was singing that title line? While doing a snappy little tap-dancing number? (Well, ok, I did nothing at all resembling anything even remotely close to a dance. But I did sing!!)

You know how I mentioned that general meh-ness I've been experiencing lately, and how it's creating a block to my blog-posting?

Well, there is one other little thing that is creating a bit of an impediment these days. I really don't want to throw anybody under the bus, or anything, but...well, it's been a little hard to dodge my shadow lately.

Max has always been an extremely social little guy, vastly preferring to be with people than to be alone, but his need for closeness has been especially pronounced lately.

I thought pictures could tell the story more succinctly than words.

So, let me present for your viewing pleasure, Me and My Shadow, a photo essay depicting last night's events. (With a few assorted words thrown in.)

We made supper.

Max watched me wash & peel the carrots.

(Yes, I see the knife. But I know his hands are firmly attached to his headphones, because he's listening to his most favoritist song in the world -- "Seasons of Love" from the musical Rent. I put it on his little mp3 player, 10 times in a row, literally, and he plays it on repeat, literally. Because the rest of us are kind of done listening to it by now. So anyway, I wouldn't normally leave the knife that close, but for the 3 seconds it took to snap this photo, I deemed the situation safe.)
Once the carrots were peeled, it was time to dice them.

(He was still listening to his music, but it was definitely time for him to back up a tad. Big knife = healthy respect. Period.)
I told him he needed to back up!(and he did. See?)

I added the carrots to the pot of soup.
(This stovetop has the largest burner towards the FRONT, which is just not good. He wants to watch it boil. It know it doesn't ACTUALLY take any longer that way, but it sure FEELS like it will never boil; cooking seems to take forever when I am trying to monitor HIS pot monitoring. I think whoever wrote that old adage probably had a child like Max.)

After supper we walked (shadow style) to the computer desk.

I got comfortably seated
(and he sidled up close in case something exciting should occur....)

(...like a picture. Or a video. Or a pop-up ad. Or anything that resembles a picture, a video, or a pop-up ad.) When one of those caught his eye, he wanted to sit on my lap, closer to the action.
Which made my view something like this:

(So it turned out to be a short session. No blogging occurred. I decided to go to bed instead.)We headed down the hall to the bathroom.

(I am not going to include photos of my bathroom ablutions, except for one.)

I took a shower.

Then it was time to go to bed...

...and sleep.

So please understand if my posting continues to be light. Even if I manage to dodge my shadow, I have to get past that wall of meh.

(LIGHT BULB!!) Wouldn't that be the perfect video game?? You have to maneuver the mom through a Maze of Meh, while dodging shadows, avoiding illness, and collecting points for all the errands and chores you pass through. Bonuses for baking cookies and kissing boo-boos. Isn't that brilliant?!

Call me, Wii!! I smell a big one!

Oh. Actually, that smell might be emanating from...a slightly different source, one a little more to my immediate left. (Ahem.)

At Least He Went Down Smiling

2008-12-01T21:00:00.001-05:00

Max and his brother have been playing some rough-and-tumble games together lately. It's kind of hard to watch, because for so many years it just didn't work, and I still find myself generally doubtful. Max was always too fragile or totally unprepared or clearly over-powered...but the tides are slowly turning, and now when those two get wild our reprimands are sometimes aimed at Max for being too rough & wild with his older brother!

Though the ball-tossing, chasing, screaming, tackling, hootin' & hollerin' rowdiness doesn't look like fun to me, the boys seem to generally enjoy it. Max had a particularly abrupt fall (aka TACKLE?) recently and I ran towards the crying with both barrels loaded, firing off zingers and accusations and warnings and loud, angry I-Told-You-Sos...

...but when his tears ended, it was readily apparent that the boy had indeed gone down smiling. The rug-burn around his eye indicates a ginormous squinty grin was present right up to the bitter end, even as he was skidding face-first across the floor; the scab forms a perfect outline of his smiling eyes. Yowza.
But EVEN SO, guys, can't I interest you in a nice, quiet round of Dolls & Diapers? Or Fake Napping? Counting Your Moles? Practicing ASL?!?

Cause it's only 5:15 but it's already dark outside and it's only the first day of December but there's already snow on the ground and you're only having fun but MOMMY'S HEAD ALREADY HURTS!!

*****

What do I file this under? Frustrations? Or Favorite Things? ...perhaps Milestones, in a bizarre sort of way? hmm.

Thanksgiving: Pass It On! (Cross-post)

2008-11-26T09:41:00.007-05:00

Yesterday was a humbling day. An emotional day. A Thanksgiving kind of day.

The Sunday School class my husband and I are part of decided to donate money to buy boxes of food for families at one of our neighborhood elementary schools. It's the school that our kids attend, and where several of our class members are employed. It's a school that has some 70% of its students qualifying for free or reduced lunch programs. It's also the official "homeless" school for our community.

We collected money in class and quickly came up with enough money to buy 10 boxes of food from a local distribution center.

Yesterday, our family went to pick up that food and deliver it to the school, where the guidance counselor had selected 10 families to receive the boxes.

We got the food loaded up much more quickly than we had expected, and found ourselves with extra time on our hands. We decided to go to the grocery store and pick up a few items of our own. It was a typical family grocery store trip. Some bickering about who got to sit on that side of the car, some impatient snapping at each other, some negotiating for treats, some minor annoyances. We loaded back up with our own groceries (charged on plastic with nary a thought) now also in tow and drove to the school for the delivery.

**SCENE CHANGE**

Some of the families were already at the school, waiting, and the positive energy in the room was almost palpable. Everyone was smiling and helping and quietly talking. When we were done unloading, the counselor asked if we would be doing this regularly, and I said that I hoped so, but wasn't sure. He said that after talking with teachers, he had identified 16 families in need (though certainly there are more), and he would love to be able to connect more of them with some assistance.

It was with very mixed emotions that we left the building, realizing that we felt so good about this thing we had done...but that it was only a drop in the bucket. As we walked out the door, the counselor handed us some envelopes, explaining that the families had written thank you notes.

I got back in the car, working my feet in between our bags of groceries piled there on the floor. We drove away in silence, trying to process it all. And then I handed out the envelopes so we could read some of the thank you notes out loud. I wanted the kids to hear. I wanted them to know what it means to help others. I wanted them to understand this thing they were now a part of. (Or perhaps, this thing that was now a part of them.)

The thank you notes were heartfelt, gracious, kind. I had a knot in my throat reading the first one out loud, and found myself blinking back tears, just thankful for what we have, and thankful to be a part of something good, and incredibly moved by the simple fact of people helping people.

When my son started to read a card out loud, the emotions swirling through our heads reached a moment of overwhelming depths. (Or heights, depending on your view.)

Tears started to run down his cheeks, and he couldn't finish.

"He said there were sixteen families...but we only had ten boxes," he said.

****

I started this post last Sunday, but I couldn't finish it. I just didn't have the words. And now, even as I type this days later, the tears once again begin to rise up my throat and I find I still don't have the words.

But I know that when I come back and read this, I will remember.

I don't know how to record the moment, but simply to say that it was beautiful and tragic all at once. That it made me feel both immensely powerful in my ability to make a difference, and also to feel incredibly small and of no consequence at all. It made me feel incredibly good, and incredibly guilty. It was despair and hope, mingling together in one breath.

****

On the way home from the school, we stopped to pick up Max. (He paid a visit to his grandparents while we did the grocery run.) It was time to go to his Physical Therapy appointment.

This is a new addition to his weekly therapy routine. Through word-of-mouth, we heard about an amazing therapist nearby -- the kind with magic fingers and sensitive spirit -- and she was willing to see him. Despite her full schedule. Despite our total inability to verbalize what we want her to do to him. Despite the fact that she doesn't take Medicaid, though that is the only coverage Max has, and that we can't really afford her full-price visits. She was not only willing, but excited, energetic, curious, eager! She's offering us a greatly reduced price and is seeing him 5 weeks in a row for a trial run. I don't know what might happen, but I am extremely grateful for the possibility.

I left the house with my grocery tears barely dried, then drove straight to this appointment, a fresh set of kindness-of-others tears threatening to spill over.

****

They say it's better to give than to receive, and I agree. It's certainly easier, I do know that.

But what is really amazing is to be on both ends of that equation within a short span of time.

My cup runneth over. I'm filled with Thanksgiving, though it it's not the official day for that. I'm proud to be a part of the human race today. That may sound like a crazy statement to make, but in a world where the headlines sometimes make me hang my head in shame -- for all of us -- it is a profound and welcome feeling to be a small, fitted piece in this very good puzzle.

Here's my challenge: Do something good today.

It can be large or small....just something above & beyond the usual, whatever your particular brand of usual might be. If something nice has happened to you recently, pay it forward. If nothing nice has happened lately, do it anyway.

Just tip that first domino over, and trust that the momentum can flow on down the line.

Happy Thanksgiving, world.

Wordless Wednesday: Happy Birthday, Grandma Great

2008-11-19T21:44:00.000-05:00

I Swear He Was In School ALL DAY!

2008-11-18T08:30:00.000-05:00

This headline jumped off the browser and caught my attention this morning: Pirates Hijack Tanker with $100M in Oil.

I sort of forget this stuff still really happens. (And, I swear, Max was in school all day; he had NOTHING to do with it!)

And now I better change topics before Homeland Security develops an interest in my son.

*****

(PS. JOKE! Joking here! Just kidding around! Please don't flag us, Mr. Officer Sir! Just a little pirate humor for the day! HA HA HA, WE'RE ALL LAUGHING, SEE?! = Joke!)

A Pirate For All Seasons

2008-11-13T09:33:00.004-05:00

I originally picked up a baseball costume for Max to wear while Trick-Or-Treating. I don't usually buy ready-made costumes, but this one was in Cubs colors, and had built-in muscles, and I just couldn't resist. Now, if Halloween fell during the summer months (i.e., Cubs season), it would have remained the obvious choice. But baseball season is over, and since making that purchase we have been completely taken over by PIRATES.

I returned the baseball costume, and dug through the dress-up box for pirate wear instead. It may be a tired cliche for others, but it's exciting new stuff for us!

A Guy Named Glen, Raggedy Ann, and The Dread Pirate Max

Granted, the outfit was a bit more King Arthur than Pirate (especially once he took off the vest and all headgear -- kerchief, earring, AND eye patch), but Max totally got it. He really got behind the whole Trick-Or-Treating concept this year, too! We walked around with him while his siblings were with other groups of kids, and even without their assistance, he went up to each door and got his candy. Some places (the ones that had the really good stuff, I guess) inspired him to linger at length and gaze VERY CLOSELY at the goody stash, but he really was able to do it quite independently. It was fun to watch.

And of course he was a natural at the racing* and pillaging, jumping off the poop deck**, and sounding his joyful "arrrgh!" -- and he even remembered to sign "thank you" now and then.

It was another one of those Aha! moments, when I realize just how far we've come. Max kind of enjoyed trick-or-treating last year, but needed to walk hand-in-hand with his grandpa, and was completely out of sorts and signing "all done" after a trek around the block.

Flashback moment: Gilligan & The Skipper (Halloween 2007)

Furthermore, his costume last year was purely for OUR enjoyment...but this year he was completely on board and took obvious personal pleasure in wearing his pirate duds.

I found a pirate mirror cling set at Target in the post-Halloween clearance aisle. I plan on putting it on the mirror in his bedroom so that even though the traditional piracy season is now over, he continue to be a pirate any ol' time he wants.

*****

* Yes, clearly I meant the 'c'.

** Not quite sure what this means, but it sounds totally plausible...

Because Sometimes Pirates Have Disabilities, Too...

2008-11-08T23:38:00.005-05:00

So we're continuing on the pirate theme around here. I've been amused to see the places Max finds a pirate -- pirates in places I hadn't even thought to look! It's like he's living in a "Where's Waldo?" book, singlemindedly focused on finding random pirates tucked here and there, behind each door, and in every nook and cranny.

Did you know there's a pirate in the intro to SpongeBob Squarepants shows? I obviously knew on some level, because I've heard/seen it a jillion times...but previously, Max was always focused on hearing the "Ohhhhhhhhhh!..." at the start of the theme song, not necessarily on the pirate who is singing it. But now SpongeBob's like a whole new show! Because PIRATE! Right there! On the screen!

There are pirates on the yogurt!

There are pirates in the alphabet book! (Ooo!) Pirate Halloween costumes in the newspaper flier! (Ahh!)

In the store aisles, we even discovered a box of pirate band-aids and a pirate toothbrush!

(Tooth brushing is a rather gaggy & unpleasant event around here, so if this battery-operated, Pirates of the Caribbean-themed, rotating brush can help, it's money well spent! Thank you, Disney.)

I was browsing cafepress.com this morning to search for pirate images and came across this one -- not exactly right for Max, but I quite like the graphic:

(Click on the photos for links & ordering info.)

Are there any wheelchair-using scallywags out there in the market for a pirate shirt?

Some other pirate designs caught my eye as well -- like this one, featuring ASL:

And this one, in braille:

And this one, targeting dyslexia:

These shirts can be snarky, or good honest fun, (or BOTH), depending on who is wearing them (and why). I was rather tickled to come across them.

Normally, I would be tempted by the sign language shirt, but Argh-ing like a pirate is definitely a VERBAL interest for Max, so I continued browsing and found these two shirts that seemed more appropriate for him:

The dog-PLUS-pirate combo would absolutely thrill him. (And somehow the idea behind it seems sort of appropriate -- I often feel like we are translating a secret & mysterious language, too. Plus it just tickles my funny bone.)

And then there's this option.
It's a solid nod to talking like a pirate that would likely trigger many spontaneous "arghing" conversations, which Max would enjoy greatly, AND it is one of the few with an actual pirate instead of a skull....but, frankly, the knife in the mouth worries me a bit.

I plan on ordering a pirate-y shirt for one of Max's Christmas presents this year. Are there any other fun recommendations out there I should consider before placing my order?

Wordless Wednesday: Crazy Hair Day for School

2008-10-29T00:01:00.000-04:00

Sleep Is for the Weak?

2008-10-13T11:29:00.001-04:00

There's a great-looking book floating around the blogosphere these days called "Sleep Is for the Weak." It's a collection of essays written by an assortment of well-known mommybloggers (and daddybloggers?) about parenting. It's been on my book list for a while now, but I haven't gotten around to reading it yet.

I see links for this book daily, but it would probably stick in my head anyway, because the title is just so catchy. It is half joke, half reality -- a battle cry that unites us all as we venture forth into the frontlines of babydom.

But I wonder...is there a point in time where the joke falls flat? Where that phrase brings tears of exhaustion to one's burning, bloodshot eyes? Where that book is shuffled to the very end of the reading queue, based on the title alone?

Because, let me tell you, I think that time might well be creeping up on me. If I were to see that book on the shelf of a local store, I would be equally likely to snatch it up in delight...or knock it to the floor and roll my car right over it, with nary a glance, depending on the day. (Which, translated, means, "depending on how much sleep I got the night before.")

Which brings me to my point: sleep issues. Nothing's working. Frustrated. Tired. Annoyed. Need solution. Yada yada yada, Round Number Seventy-Jillionty-Five.

Now if you find yourself in a similar situation, you already know what I'm talking about. Your specifics might be a little different, but that's relatively unimportant. You speak my language. You feel my frustration. You live my exhaustion.

You might be sleeping in a chair with your metal-braced or casted child. (hi, Rach) Or nursing during the night for the 7th year in a row. (hey, Gwen) Or simply up at 3 a.m. because your child is. (Penny, Lisa - greetings. *yawn*) Or coaxing your child to sleep each night, only to find yourself repeating it all over again several hours later. For nights upon months upon years on e...

Oh, sorry -- I nodded off for a sec. Now where was I?

Right. Seriously, what happens when the sleepless baby months stretch into years? Decades?? (Oh, goodness, I feel faint -- is it possible to last that long?! If any of you decades-weary parents are out there, I'm not sure I'm prepared to hear about that just yet, mmkay? Thanks. Let me stagger along in my steady belief that this will end. Somehow. Some day.)

What makes that book title clever is that the people saying it are, in fact, strong people who happen to be bravely and proudly doing without for a bit. But when the deprivation becomes chronic, those previously strong people might just find themselves quite literally shrivelling up into weaklings.

At least, that's what I find happening to myself these days.

Words -- nay, entire concepts! -- escape the tongue. Deadlines go unmet. Important papers are forgotten. Emails are unanswered. Partnerships disintegrate into scorekeeping. Patience is, itself, trying. Kindness masquerades as Optional. Sanity crumbles.

Blogs are hopelessly neglected. (*cough, cough*)

But back to the title -- "Sleep Is for the Weak." Hearing that phrase as one of the weakened, it begins to morph into a brilliantly simple solution. A soothing balm. A delicious promise. A lullaby, whispered gently in my ear. A Psalm.

Sleep, and you will be strengthened. Dream, and your visions will be restored. Snore, and the door shall be opened unto you...

I would like to propose a companion book, titled "Sleep Is for the Strong." I envision essays contributed by mommybloggers (and daddybloggers) who write about parenting children with disabilities. About living fully when the inevitable return of peaceful slumber hangs in doubt.

The irony is still there, of course. Because the people saying it are, in fact, weakened people who happen to be bravely and proudly -- strongly -- doing without for a bit.

It takes strength to sleep through the alarms or bleeps of life-assuring machines signalling problems. It takes strength to sleep in interrupted segments until the next scheduled feeding or necessary repositioning of an immobile child. It takes strength to sleep through the fear of what the next minutes or hours or days might bring. It takes strength to sleep when your child is not.

Again, the specifics are relatively unimportant; the common bond is still there. It takes strength to remain chronically sleep-deprived yet continue to seize the day.

Am I breaking down? Am I in the midst of a crisis? No, don't worry. It's simply Monday.

But I'm just sayin' --that hypothetical book? Sleep Is for the Strong? Well, that is a book that I would certainly snatch up in delight and shuffle to the TOP of my book list, regardless of the day.

Is anybody out there awake enough to write it? I'd like to pre-order, please.

Aaarrr, Me Mateys!

2008-10-08T06:45:00.010-04:00

Recently, Max got off the school bus with some new accessories...an eye patch, a fake earring, and a plastic sword. His bus driver was wearing a pirate hat, and she Aaaarrghed a farewell to him before setting sail.

Max's class celebrated International Talk Like a Pirate Day in school. (Isn't that a hoot?!)

They hunted for treasure & colored pirate-themed pictures, the Physical Therapist came into the classroom to help the kids walk the plank and crawl through tunnels, and, of course, they engaged in lots of crazy pirate talk. I love that his teacher finds such fun ways to work on goals while keeping the daily routine exciting.

Here's a glimpse of Max in full pirate mode:

He continued "Aaarrr-ing" all week. The sword was broken long ago, the earring is lost, I think the eye patch is around here somewhere...but the Pirate Talk lives on!

**Edited to add: Later, in the grocery store's dairy aisle, Max spied a pack of yogurt drinks decorated with the Backyardigans in pirate hats. He was really excited and grabbed a pack to carry through the store, insisting that we take them home.

-Avast! Do ye yellow-bellied sapsuckers a'fear the likes of the Dread Pirate Max?

-Uhm... Ahoy, there...let's just say I was fully supportive of that particular purchase.

So, anyhoo. Now snacktime is a rather noisy affair, as it inspires me to call out, "Yo Ho Ho and a Bottle of Ru--nny Yogurt! Aaaargh!!" And Max responds with his own gleeful "Aaaarrr!"

We're getting a LOT of mileage out of this one...

Wordless Wednesday: Mesmerized.

2008-10-04T08:05:00.001-04:00

Obeying Thy Mother

2008-09-21T08:23:00.003-04:00

Max was following me around while I made supper the other night, when suddenly he sat down and took off his shoes -- right there, smack dab in the middle of the kitchen. I told him that the shoes needed to be out of the way, and I asked him to go put them by the front door.

He readily agreed, grinned and said, "Oh!", gathered up his shoes...and took off.

This is what I found:

They really are "by the front door" -- aren't they?!

I know his class has been working on prepositions at school. They've been using the signs, AND pictures, AND words for exercises where they locate objects in the room or in a picture.

I got quite a kick out of his overly literal interpretation of my request, but also found myself wondering if that quirky response was actually due to a new level of comprehension. After all, "by" often means "beside", and "beside" often means "right next to" or even "sides touching" --right?

I think he could be on to something...

Slowly But Surely: The Second Version

2008-09-11T10:24:00.002-04:00

The other thing that's occurring slowly but surely around here is my internet service. (Actually, now that I think about it, "surely" really isn't even the right word...)

My connection here is painfully s...l...o...w and somewhat RanDoM, and it makes web-browsing and blog-posting a test of endurance.

I'm looking into other options, but posting will remain light until the situation improves.

Slowly But Surely

2008-09-11T10:00:00.005-04:00

We have been in our new home for a little over a week now. There are still boxes sitting here and there, and many more changes that need to be made, but it's definitely feeling like home.

Max was pretty confused the last day at the old house. Most of the moving took place while the kids were at school, so when Max got off the bus that day, things had changed dramatically. He kept walking around the empty rooms and some random blank spot would catch his eye. He froze in the kitchen, staring at the empty spaces under the bar where the stools used to be, exclaimed, "Oh!" and then lifted those enormous, soulful eyes at me and signed "Where?"

We repeated this throughout the house, and he was just genuinely puzzled to realize the beds were gone and the computer was gone and the TV was gone! I suppose bits and pieces has been disappearing for a while by then...but once the rooms were completely empty, nothing made sense. Our lives really didn't seem to belong there anymore.

I kept trying to explain that we would be in a NEW house with our beds and stools and TVs...and he was listening intently, standing very close and still, staring right into my eyes with a serious expression. After I repeated several variations on the "new house" theme, Grandma arrived to take Max to her place for a few hours while we finished up the cleaning and turned over the keys.

Only later, after the keys to the house were handed over, did it occur to me that I missed the most obvious key for Max's understanding: blowing kisses and waving goodbye to each room. I was so busy using my words, and my words, AND MY WORDS...but actions speak louder than words, right? How could I forget this, when the King of No Words is standing at my feet, asking for help?!

I completely missed it -- the simple, direct route to goodbye. It's so obvious in restrospect (this is a boy who often blows the TV a kiss and waves goodbye to it when he leaves for school!), and I have no doubt it would have helped him process the move, but I just wasn't thinking on his wavelength that day.

Thank goodness he's a go-with-the-flow kind of kid (for the moment-to-moment stuff). He joined us at the new house and ran around grinning and excited, pointing out familiar items and enjoying the adventure.

When bedtime came, he was compliant and calm. He helped us put on his pajamas and brush his teeth, took his Benadryl, kissed everyone good night,...and then had no idea how to proceed.

His usual routine (laying on the sofa, watching the Cubs with his dad) wasn't possible. The sofa was there, and he found his favorite pillow and blanket in their usual spot on it, but there was no tv. They sat in the darkness for a long time, but he just could not get to sleep.

So then I took him into bed with me, which also usually works. He snuggled close and held very still, but he kept lifting his head off the pillow and staring at the bedroom window. I don't know if it was the slice of light coming through the curtains, or simply the fact that the window existed, but he was incredibly bothered by it.

(If it's the decor...well, then I totally get his opposition to this thing.)

He kept a close watch on that window for about an hour, then finally started signing "All done!" repeatedly, frantically. He cried and yelled and pointed and kept signing that he was done. Just when I started to think it would never end, he fell asleep.

It was a very short and emotional night.

The window thing seems to have worked itself out as mysteriously as it started, and we finally managed to get a TV hooked up, so the bedtime routine is going more smoothly than that first fretful night. In fact, Max slept unusually well most of last week...but now this week it's a real struggle again. (Sigh.)

I don't know exactly what the problem is -- we usually don't, quite frankly -- though I suspect it is indirectly tied to the new house; it's not literal, like the window protest was, but probably due to the fact that he just isn't "in a good place" yet. (and no, I'm not referring to the pink & green bathroom this time...but I can understand your confusion.)

The weekend was pleasant at the time...but he didn't eat or drink well, and was probably overstimulated; we are feeling the effects now.

In the same way, but on a larger scale, Max made the new house transition smoothly on the surface...but he's clearly still a bit "off" internally.

So that's the scoop here, at the House of Mystery. We're just not quite back to the usual scene (none of us, really, not just Max) -- though I can see it hovering just around the corner.

We're finally aimed in the right direction, and I know we'll get there, each of us, slowly but surely.

Moving Right Along

2008-08-28T07:30:00.001-04:00

I don't think I've mentioned it here yet, but we are moving. Today!

I've composed so many great birthday posts in my head, but just haven't had time to get them into a form others can read. I was anticipating the start of school so I could catch up on posts here...or maybe NAP?!...but my days have been filled with packing, instead. We've got our work cut out for us in the new place, too, but once the deadlines are all removed (and my internet service is reconnected) I know I'll find time to post more regularly.

This move is going to be a really big change for all of us, but particularly so for Max. He's got his routines here at the old house, and all of them are going to be disrupted. In some ways, this is a wonderful thing, though, because we've got the perfect opportunity to break and change those routines that are causing problems here!

I'm trying to really put some thought into how we will physically arrange things at the new place, what "rules" we will set, and how to make the transition as smooth as possible for him. It will be a good home for Max, (and for Max of the future, too); consideration of his needs fueled much of the decision to buy that particular house.

Earlier this week, Max selected a big, black, plastic bin out of the pile of empty boxes on the front porch. He carried it around for the whole evening, so I decided it should be his own personal moving box. We've been putting all his odds & ends and small, beloved objects in it, and it will be the first box to go into his new room. His bed will be all set up by the time he gets home from school today, and as many of his familiar items as possible will be where he can spot them.

We've tried to talk about the move and prepare him as much as possible, but taking this concept from the abstract to reality will be the real test.

As I've said before, this move will not be an easy one, but it is a good one.

Wish us well! I'll be back soon.

Happy 7th Birthday, Max!

2008-08-21T09:40:00.001-04:00

The day of your birth -- August 21, 2001.

*****
On your 7th Birthday, signing "thank you" for a present.

Wow.

Just...wow.

Wordless Wednesday: Me and Mini Me -- The Birthday Edition!

2008-08-20T15:00:00.000-04:00

Microcephaly in the Media: Wayward Walnut

2008-08-18T10:15:00.001-04:00

This image is another one for the Microcephaly in the Media series (although it would clearly fit better in a series called Microcephaly in Mother Nature):

I was sitting outside and noticed a walnut in the grass. Only instead of "walnut", my immediate thought was "brain"...

...and then I didn't know whether to laugh or cry.

This is exactly the kind of thing that hits me out of the blue sometimes, and makes me realize that my thoughts about microcephaly are never very far away.