Monday, June 29, 2009

Where the Wild Things Are Mesmerized

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!)

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Sunday, June 21, 2009

Happy Father's Day!

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

Happy Father's Day

Wednesday, June 17, 2009

Is Summer School Really Worth It?

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.


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! !


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

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Sunday, June 14, 2009


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 "" and "" 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.

Thursday, June 11, 2009

Fabulous Food Photo Cards!

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

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

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

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

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

These four photos are especially helpful, too...

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

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

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

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

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

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!

Tuesday, June 9, 2009

Ready to Work.

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"

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Thursday, June 4, 2009

Signing Time Swimsuit

Max got a present from his Grammy today -- a new swimming suit with built-in floats. He was excited by the present to start with, but he got even more excited when he noticed the Body Glove logo on the front of the suit. He started exclaiming, "Signing Time!" because he thought it was the hand logo from his Signing Time videos.
He carried the suit around for a long time exclaiming repeatedly over the Signing Time hand, then he wore it for a while, and he even ended up sleeping with it in the bed beside him that night. It was about the biggest thrill $15 can buy! (Thank you, Grammy!)

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

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

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

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

Wednesday, June 3, 2009

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

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.



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