It's a kind of magic...

We went to Disneyland Sunday – the day after Captain Adventure was almost eaten by sharks when he plunged into 30 foot icy-cold waters off the coast of Alaska jumped into the pool.

You can imagine how calm and rational I was by then. Ahem. Yeah, I’d come up with at least sixteen THOUSAND ways he could be maimed or killed at the park – most of them involving a fast-running autistic kid and moving rides.

As we parked in the structure, my husband (probably sick of me and my constant “WAIT! What if he ends up {ridiculously improbable tragic end}?!”) suddenly said, “Hey. Do you suppose they have some kind of sticker or something we could put on him?”

I married a brilliant man, people.

Disney is big with the stickers and buttons. Birthdays, anniversaries, first visits – if you’re having An Event of any kind that you are celebrating at Disneyland, go to City Hall and ask. They probably have a button, and the cast members are always watching for them, and they will respond with appropriate congratulations, salutations, and if they have any “perks” they can offer, they frequently will.

So I went into City Hall to see if they had, you know, some subtle button or sticker we could staple, sew, hot-glue and otherwise attach to his little body. Maybe a battery-powered neon one that flashed something like, “I AM AN OVER-STIMULATED AUTISTIC CHLD! IF I’M RUNNING AND GIGGLING AND THERE ISN’T A PARENT BEING DRAGGED BEHIND ME CLUTCHING THE OTHER END OF MY BUDDY HARNESS, GRAB ME! REWARD FOR CAPTURE!”

Subtlety personified, that’s me.

So I walked up to the desk and sputtered out something about my son and he’s autistic, well, he’s…he’s not, you know…well. Yes. He’s autistic. Technically it’s PDD-NOS, ha-ha, which is, you know, not AUTISM-autism, but…yeah. Well. Anyway! We were wondering if you had, you know, some official button or something…because we know your cast members are trained in special needs kids, and we’re just kind of concerned that, if he gets away from us and all…

Did I mention that I am oh-so-smooth, too?

“I understand completely,” the perky young lady said cheerfully. “So, would you like to have me designate your stroller a wheelchair?”

{blink-blink} “Uh, well, he can walk and everything, he’s not disabled, he’s just…”

“Can he stand in lines? Wait his turn patiently and so forth?”

“Uh, well…not really. Sort of. If they’re really short.” (This, of course, means ‘no, he can totally NOT handle standing in lines,’ which he can’t – he generally doesn’t get to go on more than one or maybe two rides over a twelve hour period in the park, because he can’t handle something as simple as even a thirty minute wait in a line.)

“Does he handle crowds well?”

“Um…sort of? They don’t scare him or anything, usually, but he does get flustered. And lost easily, too.”

“What’s his name? How old is he?” she asked kindly, pen poised.

“Uh…Captain Adventure, and he’s four…”

“Hi, Captain Adventure! Hey buddy! Are you four? Are you a big boy, four years old? Are you going to have fun today?”

He stared at her left ear for a second, then dropped his gaze down, put his hands in front of his face and began wriggling his fingers frantically, humming loudly and swinging his head back and forth. Nice. Thanks, kid. ‘Oh, he’s not, you know AUTISTIC-autistic’, sure, right, Crazy Denial Lady…

“Ooooookay! Let’s get you out to the fun, Captain Adventure!” she enthused, then looked back to me. “How many in your party? Six? Good, that’s the max for the card, ha ha! Just for today? OK. Here’s your pass, and here’s the description of where you enter the rides. Show this to the first cast member you see at any attraction, and they can direct you. Some attractions you will go up the exit ramp, some you will have to wait through the line BUT you do NOT have to park your stroller.”

“You mean…we can…” We can wait in a line with him lashed to buckled in his stroller?! Instead of having to PHYSICALLY HOLD HIM, in our arms, the whole time?! Holy crap, that alone was…it was just…{sob!} I’so’happy…!

“Absolutely! We want you all to have the best day possible here! Now, if any cast members have any questions, they can call us here. If you encounter any difficulties at all, see the nearest cast member for assistance.”

So we went forth with our card declaring our stroller to be a wheelchair (the stamp actually has an icon of a stroller, an ‘=’, and a wheelchair icon!)…and the difference in our day with him was staggering.

For some of the rides, usually ones with very narrow and/or twisty line queues (the worst kind for Mr. Man!), our access was up the exit ramp. At the end of the ramp, we were greeted by a ride attendant who checked our card and queued us up right there. The area itself was quieter than the main line. Not nearly the same crush of people, not so many voices talking-talking-talking, fewer people trying to engage that adorable little boy in conversation. The cast members were brilliant at handling him, quick to take stock and know just how much interaction was perfect…quicker still to back right off if he showed signs of distress.

And, most importantly, while we waited our turn, he could clearly see the ride we were about to board. We were in the right place! There it was! The boats! The cars! The elephants!

Usually, theme park lines are hell for him. He’s very linear in his reasoning, with very little ability to think either ahead OR behind. He really struggles with the concept of “we must do this first for a while, and then we get to do that.”

Even if we make him do it, so he realizes that “ooooooh, I see, I AM going on the ride!”, it doesn’t necessarily “take” until we’ve done it a whack of times.

Just because it worked out that once doesn’t mean it will work out this time. And even then, it doesn’t automatically transfer to other situations, even extremely similar ones. Just because it worked out on Autopia does not mean he will understand the same concept holds true on Peter Pan. Nope, you have to start all over with it, with the explaining, the demonstrating, the walking him up and down the line so he can see where it starts and where it ends, responding to his increasingly anxious questioning (“Go dat way? Cars? Mommy? DO CARS? MOMMY! GO DAT WAY! NO! DAT WAY! CARS!!!!!!”), physically restraining him when he finally :pops!: and makes a break for it…sigh…

It’s loads of fun. No really.

This is also why I have gone on King Triton’s Carousel so many times that, were it an airline, I’d have enough miles for a first class roundtrip ticket to Hawaii with eight days, seven nights in a five star hotel. He likes it well enough, there’s no line…SOLD!

But under this system, he was far more calm and patient. Nobody was jostling him, there weren’t hundreds or thousands of people crushing in on him, he could plainly see that he was getting what he was expecting to get. Oh, I have to wait my turn? Um…OK…I’d rather not, but OK…the waits were also far shorter than the standard line queue, well within his twenty minute max before meltdowns start no matter how hard we try to head them off.

He went on more rides Sunday than in his whole life before that.

And as we went, he began to laugh, to smile, to cheer, to engage with his surroundings. No more staring at his feet, or his hands. No more shaking his head wildly from side to side. No more random screaming and kicking.

And then…he began to talk. And talk, and talk, and talk. He was so excited by all the wonderful things around him that he just had to share!

“Ride boat today? Good job, mommy!”

“Go AIRPLANE today! BLUE! UP! MOMMY!!! It go UP! Wif BLUE! Is AIRPLANE!!”

“’Ee go TRAIN! CHOO-CHOO! Ee go train an’ RED an’ fast! Good job, Daddy!!!”

It wasn’t until the next day that how great a gift this was to us really hit me. At the time I was just happy that he had a good time, that for once neither he nor his long-suffering sisters had to endure a rotten series of disappointments. And that I had been spared the extreme low-back pain a day of holding a 45 pound kid in your arms as he fights to get down so he can bolt for the front of the ride through line after long, weary line will bring on.

That made me real happy.

The next morning, he ran downstairs, jumped into my lap with a huge grin and great excitement.

“Mommy! Sing! Sing Birdie Sing!” he hollered, and then helpfully started things off for me: “En dah eeki-eeki-eeki OOM! En dah eeki-eeki-eeki-eeki OOM! Birdies sing tweet-tweet-tweet, foh-whors OOM…EN DAH EEKI-EEKI-OOOOOOOM!!!!” (Don’t recognize it? Try this, but watch out! It not only plays a song, it’s a song with the brain-worm virus embedded in it!!)

As he continued to babble about the red bird and the blue bird and the airplane ride and the boat ride and the tigers and the fish and and and…I suddenly realized that I was hearing new words.

And…not only new words…OH MY GAWD, he was offering conversation. Real, back-n-forth conversation. Not just one word blurts, not only responses to questions with no further exploration unless prodded.

He continued trains of thoughts. He wanted to talk about how FIRST a bird did THIS, and THEN another bird did THAT. The train went HERE, then THERE. And Daddy went THAT way, with Boo Bug, and then Danger Mouse had ice cream! With chocolate!

And then, after a solemn, contemplative pause, “Mommy…I like-it chocolate ice cream, too! Yeah. Chocolate ice cream yummy.”

Oh. My. Gawd. I’ve seen bare hints of that kind of language skill from him…but this was a flood.

I don’t know if it will stick. I don’t know if a switch has been permanently thrown and the ‘conversation’ neurons are getting some more juice in that little noggin of his, or if this will fade as time passes and the excitement wears off.

But right now, he’s saying new things, and saying them in new ways. Good things, good ways. And I truly believe the positive stimulation he had at the park this time around is a big part of why.

Disney Magic at its finest, people.

It isn’t in the rides, or the buildings; it isn’t sprinkled on the food or gassed into the air. That magic comes from the people, the cast members, who went out of their way to be kind and accommodating, quietly and expertly enabling him to have an experience I didn’t think he could possibly have. They opened a new door in his mind. Whether it stays open or not, I’m so grateful I could just hug them, each and every one.

Thanks, guys. All of you. You really went above and beyond for us, provided a level of service that was beyond first-rate…even though we’re “just”, well, us. Nothin’ special here, but you made us feel like we were incredibly important, worth extra effort, that our good time was valuable beyond reason.

You can’t know what it meant to me, to see my little guy have such a good time, to watch him taking in those sights and sounds and sensations, to have a full day with him that didn’t involve constantly dealing with (and resisting the urge to smack the daylights out of) irritated strangers sick of his antics.

Thanks for understanding and accepting him, letting him be him and adjusting your world a little bit so he could still enjoy it.

But most of all, thanks for giving him so danged much to talk about that he just couldn’t keep it inside anymore. Those garbled new words and phrases mean the world to us, they really do.

May the magic you’ve given return to each and every one of you, three-fold.

PDD-NOS

We had the Big Assessment this morning. I was worried for a variety of reasons, most of them revolving around Captain Adventure’s mood.

It was a long drive to the doctor’s office - two hours! strike one!

We had to get up half an hour before his usual time (already half an hour before his ‘natural’ waking time) to make the drive. strike two!

The doctor’s office, although pleasant and very much like a friend or grandmother’s house in appearance, was not the kind of adventure he talked about all the way up. strike three!

Fortunately, he decided that he would go ahead and play with the toys and discuss things with us and otherwise play along with our crazy ideas.

Those “in the know” are already making wise noises and nodding; those in the know who know Captain Adventure are probably saying, “I TOLD YOU SO!”

For the rest of us, PDD-NOS stands for ‘pervasive development disorder, not otherwise specified’.

This is PhD-speak for, “While he doesn’t have clear-cut autism or clear-cut autism spectrum disorder (Asperger’s syndrome etc.), something is up so let’s keep an eye on it.”

He did things today that he was not doing eight months ago. Little things, like holding up toys to show us, saying things like, “It a guy! Wif backpack!” – if your kid is typically developing you don’t think of that as being in any way Significant, but it is a somewhat Big Deal for autistic kids. They don’t interact in the first place, and they certainly don’t share that they’re doing / feeling with others, not even their parents.

He also played with a doll – and not by swinging it wildly against walls or anything. Again, something you don’t really think about if your child is moving along the conveyer belt of childhood like everybody else – a year ago, Captain Adventure would not play with a doll in a “make believe” kind of way. He might bash its head against a wall, or jump up and down on it, or use it as a pillow, but he wouldn’t prop it upright and play with it as though it were a person.

Today, he made a birthday cake for ‘the baby’ out of Play-Doh, and giggled while the doctor sang the Birthday Song (and watched her face avidly, another plus), and fed the doll with a fork, and used a knife to cut the cake…he didn’t want to give the baby any juice but, see, the thing is, he loves Play-Doh, and he’d been asking me for Play-Doh just forever, and we were O-U-T, out, of Play-Doh at home (it got left out last time), and HELLO, the Dr. Lady? SHE HAD PLAY-DOH.

Juice, shmoose. Hand over the Play-Doh and let’s get busy!

He made very good eye contact, and even combined eye contact (to get her attention) with pointing (to show what he wanted) and verbalized his desire (“Play-Doh? Greeeeeeeen Play-Doh?”). When she smiled at him, he smiled back. (YAY!!!)

Strange, that all these things you just don’t ever give two seconds thought to under normal circumstances can become Big! Important! Things! when your child isn’t, you know, doing them.

A year ago, he wouldn’t smile just because someone else was smiling. He wouldn’t look you in the eye, imitate what you were doing, or look where you were pointing. Even if you were excitedly showing him something: “Look! Captain Adventure! LOOK! See the unicorn? Captain Adventure? See it? The unicorn? In our living room! Look where I’m pointing! Helllloooooo, look at me, look where I’m pointing, look at this really cool thing, HELLO, is there anybody IN there?!?!”

He also showed some of his squirrelly behaviors, like fixating on a pop-up toy and refusing to acknowledge his name being called (hollered), even when I was touching him while doing so and pointing at the new, vastly cooler by the way toy.

Don’t bother me, Woman, I am engrossed in the popping-up of Disney characters!

He made some of his strange, non-language noises. He did his babbling thing. But he was also doing his babbling thing as a way of keeping an oar in the conversational river going between the doctor and myself, which is ‘social interaction’, which is a plus.

He ran on his tiptoes, like he usually does (another possible autism marker). He took a couple laps for no apparent reason, a kind of non-verbal “ummmmmmmmmm…” while he thought about what to do next.

He didn’t want to make the froggie hop, he just wanted to squeeze it. He didn’t want to play with bubbles, he wanted to get back to the motorized bunny (can’t blame him, actually – that was a cool toy).

In the end, he scored right on the cusp between “no” and “possibly”, one foot square in “no” and the pinkie toe of the other in “possibly”. Her overall feeling was that while something was definitely a little off for our little guy, she was not really worried about him.

And yes, I came (((this))) close to bawling all over her. I managed to hold it together until we were safely (hmm…‘safely’ may be the wrong word here…) on the freeway before I dissolved.

It isn’t like we can just go off singing into the fields and ignore him, assuming that he’ll just, you know, catch up all on his own.

But she was telling me that she sees him as having all the tools he needs to do what he needs to do. He has the Empathy tool (this is a big relief to me…I’d been seeing signs of it, like when he shares Good Stuff like potato chips and cookies with me or his sisters, but he still doesn’t seem to care about other people having owies or how we feel). He has the Talking tool. He has the Social Interaction tool.

He doesn’t need to be taught how to pretend he has these things – they are there. He just needs to be taught how to use them. Thank you, Brigid, lady of healing, poetry, guardian of children.

All the same, she felt it was more prudent to go ahead and officially diagnose it as PDD-NOS to ensure he continued receiving his assorted therapies and services rather than call it “not likely” and let them lapse. There was the usual discussion around how important it is to catch these things early and treat them aggressively, and she repeated her feeling that our little guy is likely going to get right back on track and be ready for kindergarten when he turns five.

In one year. (And two months.) (Gulp.)

Why do they grow so fast? Seems like every time I blink, one of them has outgrown all her clothes, or had another birthday, or taken up calligraphy, or is studying medieval French poetry or something. Sigh.

The planet is speeding up. Seriously. There can be no other explanation for the way time is passing so danged fast, these days.

Resolving on its own?!

As the doctor arrived to do the new assessment on Captain Adventure, I realized with something of a jolt that it was almost exactly one year ago that I ripped up my paycheck and came home so that I could focus on the family’s needs without the constant whining from the peanut gallery – I (and a few others in the organization with two working parents) had been reprimanded several times for ‘excessive’ and ‘abrupt’ sick days.

With four kids going to school and/or daycare, combined with the worst flu season we’d seen in a long, long time (one of our daycares actually closed down for a day to have their toddler room professionally sanitized!), well.

There were a lot of sick days. And with both of us working from home, that meant both of us had to deal with trying to talk on the phone while children screamed and cried and begged for medicine, popsicles, ponies and trips to Europe in the background.

But I’m not going to pick at that old scab. Or the one where we’d committed to Certain Things (the remodeling, mostly) based on two incomes and then had to figure out what to do about them on just one.

I’ve got a new scab to pick.

After I had done the final rapid-fire ‘yes, no, sometimes’ response section of the assessment, the doctor sat back and said, “OK. Right. So. Why, exactly, did you feel he might need treatment?”

As I was explaining all the things that had so alarmed me, he kept nodding and occasionally scribbling something down. I told him how things were last year, how they were as recently as Thanksgiving. I explained about the tantrums, the stiff body language, the head-banging and the fixated behaviors, endlessly running around and around a table until someone intervened, distracted him into something else. The utter lack of communication, the lack of empathy he had shown toward his siblings.

How far he’s come in a short year.

“If he had been like this a year ago,” I concluded. “I probably wouldn’t have worried enough to jump into all this.”

“That’s how these kinds of isolated speech delays often are,” he replied matter-of-factly. “Just when you get good and worried, they resolve on their own.”

Have you ever found yourself suddenly and completely enraged by what is actually a fairly innocuous comment?

Oh…I got well and truly pissed.

This isn’t resolving ‘on its own’. It is resolving because his teachers and I are working our brains out on it. It is resolving because there is a team of specialists coming to him every single weekday, speech therapists and occupational therapists and of course his patient and wonderful teacher. It is resolving because his sisters, day in and day out, put up with him, work with him on communicating clearly, wait patiently for their mother to have a second for their wants and needs, and otherwise behave like really, really good sports.

I am humbled by my daughters, sometimes. They have ten times the patience I do, and dear God, they are only children.

I am spending hours each week with flash cards, playing the Color Game, taking him out in the car and asking him to identify things. I go through the supermarket with him asking him to find the oranges, the apples, the bananas, the bagels. And I’m going to admit something horrible to you right here: Sometimes, I really hate it.

I hate the way he’ll yell his mangled attempts at ‘banana’ at the top of his lungs. I hate the way people sometimes look at us when he garbles out something completely incomprehensible – he’s almost four, and he looks every minute of his age, and he often sounds (oh, brutal reality) retarded. I hate it when he gets frustrated and kicks up into a tantrum in public.

I hate sometimes overhearing things. “Mommy, what’s wrong with that little boy?” “Don’t stare, honey, he’s got…he’s…well, he’s special…”

Sometimes, I’d really just rather leave him at home with daddy and go shopping alone. Sometimes I do. And then I feel guilty because I’ve just let another ‘learning opportunity’ slip away. So the next time, I load him up and take him along and we play the Shopping Game, and people sometimes stare and sometimes they offer Helpful Hints and sometimes they want to tell me about their {nephew, cousin, grandson, neighbor’s kid} who has {Downs syndrome, autism, Pokeman Toe, Presbyterianism} and the miracle cure was {gluten-free, sugar-free, organic t-shirts, reading to them in French}.

My personal favorite was the old lady who chastised me for carrying him in the parking lot. He’s a great big boy he ought to walk you’re spoiling him he’s going to grow up a monster!

A few moments later as he cheerfully screamed, “GAH-BAH-BOO! EEEEEEEN GAH-BAH-BOO!!” (uh…would you believe, ‘shampoo, green shampoo’?), she tapped me on the shoulder and said, humbly, “I’m so sorry. I didn’t realize he was retarded. You poor dear, it must be so hard for you.”

Lord forgive me, I wanted to punch her right in her wizened old kisser. Mostly because I felt like I was going to Cry In Public (gah!), and the only thing I loathe more than crying in the first place is Crying In Public (gah!!).

There is a whole team of concerned people working with him, every single day, to get him where he is right now. A lot of sacrifices being made, a lot of work being done, a lot of care and concern and love focused on helping this little guy learn how to swim with the rest of us fish.

‘Resolve on their own’ my arse.

“Actually, it isn’t resolving on its own,” I said briskly, trying to keep my tone chipper while inside I was baring my fangs and snarling. “He’s going to the special needs preschool, and of course we’re working on it here at home too – in fact, I quit my job so that I could make all this happen for him.”

The man had sense enough to agree with me that no, it wasn’t “just going away” and that yes, all our hard work was definitely, absolutely, positively the reason he was enjoying such a tremendous improvement.

And then he ran for his car.

Sigh. Sometimes, it really is the little crap that sets you off, you know? The bigger things, well, you understand why they set your hair on fire. But I’m always surprised when some tiny little thing gets my fur all standing up and sets steam coming out of my ears.

We’ll have his formal report in a few weeks. We also have a major psychological evaluation at the end of May, for which I have to trek all the way to Sacramento.

The bad news is, I have to go all the way to Sacramento.

The good news is, due to the (ahem) FOUR HOUR roundtrip drive plus the two hours of assessment, Daddy will be in charge of the other three Denizens and their school pickups / dropoffs.

I’ll only have Captain Adventure with me.

He is, you may recall, a Yarn Monster.

He will not mind checking out the Sacramento yarn stores while we are there. Purely for research purposes, you understand. Because Rams asked about the Sacramento yarn stores and frankly the only one I knew of has closed (not, uh, that I had any time for yarn stores because obviously I rushed right home when my train arrived in Sacramento a little early and did NOT spend any time at all driving by the yarn store I remembered downtown…).

So, as an act of purest nobility and only for the sake of the common good, I shall drag myself into every a few one or two at the most yarn stores in Sacramento after his early-morning assessment.

...there goes MY allowance for the last three months...

Lest my home be peaceful…

Any time there is any threat to the peace and quiet, the Denizens are happy to go the extra mile to ensure that there shall be no peace, no quiet, no full nights of sleep and absolutely under no circumstances a clean home.

This week, they have saved me from the horrors listed above by getting sick.

It started with Eldest, who woke up in the wee hours of Tuesday morning crying due to a sore throat and mild fever. Motrin was administered, and she spent the next half hour constantly asking me when, exactly it was going to start working.

Then yesterday afternoon, Boo Bug began to complain her throat hurt. She too had a mild fever, and also some stuffed up nose issues. Drat.

This morning, after having gotten up at the usual hour to make breakfast and everything else, I decided to grill Danger Mouse on her overall condition. Of all my children, she is the toughest little cookie, and the one least likely to actually complain if she doesn’t feel well.

“How are you feeling today, honey?” I asked as she brushed her hair. “You OK?”

“Oh, yeah,” she replied. “Except that my throat really hurts when I swallow.” And then she sniffed loudly. Stuffy nose, mild fever, sore throat – yup. She’s staying home from school today, too.

Meanwhile, all week Captain Adventure has been in a marginal state where you look at him hard and wonder…Hmm…is he being a pill because he needs one, or is he just being a pill in general? His speech delay makes this really hard. Most almost-four-year-old children will tell you their woes. “Mommy, my {head, throat, mouth, nose, left big toe} hurts!”

But not Captain Adventure. He just transforms into the Destroyer of Worlds, a state ordinarily only seen when a trip to bed or a ten minute Time Out is appropriate (if I want to punish the boy, all I need to do is put him into his room by himself).

But while in Destroyer of Worlds mode, he does not ‘use his words’ – he just runs, and I do mean runs, from Sin to Sin. Tipping over the piano bench, yanking the runner (and anything on the runner) from the sofa table, pulling all the napkins out of the napkin drawer and doing his impression of a Morris dancer on Beltaine, hitting sisters with toys, refusing to eat anything except plain noodles with butter…oh yes.

He’s a real joy right now.

I take my eyes off him at my gravest peril. (Right now, he is sitting right beside me attempting to disassemble a rather complicated toy. He alternates actually trying to do it intelligently with BANGING IT LOUDLY ON THE FLOOR while singing ‘The Wheels on the Bus’. How’s the work coming? The portfolio rebalancing, the writing, the job proposal and scope of work sitting on my desk waiting to be turned in? JUST FINE THANKS!)

Naturally, because anything else would not be peaceful and/or calming and/or otherwise OK with me, the nice autism specialist is coming to the house TONIGHT to observe him.

TONIGHT. He called last night, to say he was coming…TONIGHT.

“Well, actually, he has a nasty cold right now,” I hedged. Hot carp livers on buttered toast, that’s just not a good time. Did I mention that I too am developing a slight fever and sore throat? Have I? Or that I have not slept more than two hours at a stretch since I got back from Salt Lake due to assorted Noises and Crises in the night?

“That’s OK,” he replied cheerfully. “That won’t impact my testing.”

I hesitated. On the one hand, it really isn’t a good time for Captain Adventure. Or me, for that matter – the house is a shambles and I’ve got a ton of stuff to deal with today, none of it ‘making the house presentable for visitors’. On the other, well. We’ve been waiting FIVE MONTHS to get on this guy’s dance card.

I don’t want to risk having to wait another month.

I don’t want him to see our boy at his worst, and yet, I kind of do. In a perfect world, they would see him at both his best and worst…but this isn’t a perfect world so we have to make do with having professionals witness one or two hour slices of his life and extrapolate whether or not the rest of his life is within however many +/- factors of ‘normal’.

Whatever ‘normal’ may be.

“Wellllll,” I said finally put forth. “See, here’s the thing. On the one hand, you will see his absolute most autistic-like behavior if you come evaluate him right now. When he’s sick or very tired, he does display a lot of the symptoms that made me worry in the first place. But on the other hand, I’m afraid you might not get any of what he can do. I mean, we were playing the Color Game this morning? And he said a blue ball was purple? And I said noooo, it’s BLUE, and then? He threw it at my head. And fell on the ground. And screamed and cried and kicked at me when I tried to comfort him.” {pause} “Which is not really what he’s like, you know? I mean, sometimes, but…uh, well, he’s actually a very sweet, very smart boy, very affectionate and…it’s just, well, he’s sick right now? So he isn’t using his words, and he’s kind of aggressive, and…”

My wise inner voice got back from its potty break and said, That will do, dear. You’d better stop talking now.

Thanks. Thanks a lot.

“I see,” he said. He has that ‘doctor’ voice down pat. ‘…that you are almost undoubtedly completely crazy’ was definitely hanging in the air after his ‘I see’.

In the background as we talked, three girls were screaming at once because one of them had changed the channel without going through proper diplomatic channels. The occasional outburst is perfectly normal. Right now, with all of them a bit under the weather, the outbursts are incessant and particularly loud and shrill.

“Excuse me a second,” I said sweetly. Then I put my thumb over the speak on the phone (the low-tech mute button) and yelled, “KNOCK THAT OFF, I AM ON THE !!!!!!PHONE!!!!!! Eldest! Put it BACK on Spongebob this INSTANT!”

Captain Adventure was running back and forth in the kitchen shaking his head wildly as he went, slamming into the cupboards on one end of the journey, giggling wildly, pausing to wave and shout, “HI MOMMY! CAPTAIN ADVENTURE IS RUNNING!!” before galloping back into the playroom, where he would jump onto the coffee table and wait for someone (all three sisters are Mini Mes on this front) to say, “Be careful, Captain Adventure! Don’t fall!” before jumping off for the return trip.

Ah yes. The joys of Tylenol Flu and Cold medicine. He is completely soused and lovin’ the ride at this point. T-Minus sixty minutes to bedtime, and definitely counting.

“So,” the man probably wondering why he went into this business in the first place said gently. “Tell you what. I’ll be over at five o’clock, OK? If we feel that his cold is interfering with my tests, well, we can reschedule for another time. And I’ll give you my phone number, so if you think he’s just way too sick you can call and cancel. OK? How’s that?”

“Yeah, OK. Great. Thanks. I’m sure it will be fine.”

Something heavy hit the floor. A little voice piped out, “I’m OK!” Captain Adventure began shrieking with laughter. Boo Bug cried out, “It isn’t funny, Captain Adventure!” and he replied, “Oh, DAT FUNNY!” “NO!” “DAT FUNNY!” “NO!” “DAT FUNNY!”

MOMMMMMEEEEEEEEEEE…

T-minus 56 minutes and counting. I hung up the phone (I think I said a polite closure first, but I’m not really sure) and put a bag of popcorn into the microwave. Four little noses began sniffing the air. Dinner being all of ten minutes ago, they were naturally starved. For popcorn.

The still-warm asparagus and pasta? Not so much.

They ate popcorn. I polished off the asparagus. Did you know asparagus is a natural diuretic? Yes, it surely is.

Which is why I had to get up, twice, last night…in spite of all Denizens being tucked snug in their little beds, fast asleep, all night long…

ROFL du jour

Captain Adventure’s talking is coming along pretty darned well. His teachers have mentioned that he is talking almost non-stop in class, to the point where they are torn because on the one hand, HE’S TALKING, YAY! On the other…he’s talking during story time, cleaning time, circle time, ANY TIME! They should be shushing him, but the change is so dramatic and positive they don’t want to do so.

I have a big exercise ball. The Denizens, obviously, think it is the coolest toy, ever. I frequently descend on them saying, “Hey! No throwing that ball! It is not a toy!!”

This morning, Captain Adventure has been “helping” me with every single thing I do. He’s been in my bedroom, and he got hold of the ball. He was rolling it up and down the hall (it’s bigger than he is!) and so forth.

Then he threw it down the stairs.

I turned. I opened my mouth to say it.

He looked at me with a wicked little twinkle in his eye and shouted, “Hey! No throwing dat ball! OK, mommy?”

I haven’t laughed this hard in a long, long time.

So {happy, upset} I could cry

Choose either one. They both apply. I just got off the phone with the intake coordinator at a local developmental center. Captain Adventure is going next week to start the process of a full-full-full autism assessment, with all the various spectrums and syndromes and all the “hmm, well, maybe it might be…” possibilities chased down to a definite YES or NO.

I am so happy, and so upset, that I cannot stop misting up.

We’ve had the “lite” version of these evaluations done three times now. The first time it came back “Nah!”, the second time it came back “Wellllll…” and the last time it came back “Eh, maybe? But maybe not…could be this, or that…huhn…we should probably have him checked out by the Professionals.”

Something is not right with my boy. Oh sure, he’s getting better. He’s adding words every day. I asked for a hug this morning and got it, and a big old kiss besides. When he wants something, he’ll ask for it specifically; that’s huge progress from a year ago, when he would simply begin shrieking and crying for no apparent reason, and I had to play “twenty guesses” to figure him out. Offer him juice? No. Milk? No. Diaper? No. Pretzels? Aaaaah, so that’s what he wanted…

But still. He’s just kind of…quirky, sometimes. And I don’t mean “cute quirky” or “showing some individuality” quirky.

Weird quirky. He doesn’t generally do things that scream “AUTISM!!”, but he does do things that murmur it. Hint at it. Suggest that maybe-possibly…it could be…or maybe not…then again…ARGH.

I have been trying to get him into this center for evaluation since before Thanksgiving. I have been calling and calling and calling. Between people being gone for holidays and the sudden spike that comes at this point in the school year, I was starting to think we were never going to get a call back.

And then glory hallelujah. Someone called me back.

Bang! I get the referral letter!

Wham! Please send us copies of this, and that, and that other thing, the one with the squiggly lines!

And today, rrrrrring-rrrrrring, hello, can you come in next week? It should be for about two hours, please come alone with the child, no siblings or Concerned Others…

I managed to stay perky while I was on the phone. I took down information. I said “Great!” and “OK!” and “No no, next week is awesome – sooner the better!”

Early intervention, after all, is key…you don’t want to wait on these things…

And then I hung up the phone and dissolved.

Sometimes, I don’t want to know. Maybe if we just ignore it, he can be our baby forever. It’s OK. He can just be the way he is. Forty months old, and talks like a nine month old. Babble babble Mommy babble babble Dora babble babble car!! Can’t potty train, has to be carried because he won’t take my hand and walk obediently at my side, can’t be left alone, not for a second, because he will start destroying things in innocent but wild abandon, exactly like a twelve month old trapped in a three-and-a-half year old body…

Sometimes, the possibilities are just so overwhelming. But I suspect this is exactly like getting shots. I always get so worked up when I know I’m going to have to get a shot. It really is extraordinarily silly. I get into A State every single time. I’m worse than my children, I seriously am.

And then the actual shot is never, ever as bad as the State I got myself into over it.

He is a sweet, loving little boy. He is wicked smart. He is not “normal”, or anything like it. Somewhere in that little head, there are connections that just aren’t being made right.

He’s going to need extra help to straighten it out. And maybe, just maybe, they never will quite hook up the way most brains do.

That’s OK, too.

He’s just himself. And at being Captain Adventure, he is as perfect as perfect can get.

Now if you’ll excuse me, I’ve got to go find my Big Girl panties and put them on. I’ve got a lot of sucking up and walking off to get done.

And also photocopying of papers with squiggly lines that mean something about his hearing, and other papers with squiggly lines that mean something about his cognitive skills, and other papers with long rambling paragraphs about how he matches shapes and colors and blocks and whether or not he makes approximation sounds…

The bus the bus the bus the bus the bus

Let it herewith be known that the Special Needs Preschool has A BUS.

The kids? They can take the bus. The bus? It is free. The bus! Bus! The Bus! Have I heard, have you heard, has EVERYBODY HEARD…about The Bus?

Of the roughly thirty kids in the program at this school (no, not all in one classroom – there are six classrooms), about 27 of them take The Bus. The Bus picks them up outside their homes, transports them to preschool whilst parents (presumably) loll about in the pajamas eating bon-bons and watching Oprah, and then transports them home again.

The other three preschoolers, denied the splendor that is The Bus, have to be taxied to school by their crummy, boring and properly-clothed parents in their Not The Bus vehicles.

I have been told about The Bus, in exhaustive detail, at least five times now, by four different people.

They are wonderful, caring people who wish to ensure that I have heard about, you know, The Bus. Because the bus is a marvelous time-saving device, and also it can be very good for the children because it provides yet one more layer of school-related ‘predictable transition’, which is code for “helps settle their little butts down, because the bus means that they are about to be in school where there are rules and so they must begin to think about acting like civilized human beings rather than little animals who defecate on the kitchen floor and then run laughing like maniacs throughout the house while their mothers chase them with hastily snatched wipes yelping, ‘Wait, there’s still poop on your butt!!!’”.

Not, uh, that this has ever happened to me, you understand. I’m just saying, is all.

Ahem. ANYWAY.

Yes, The Bus is, indeed, a mighty thing.

We can’t use The Bus, however.

It is, you see, an issue of timing.

With the Kindertime program, my day is considerably simplified – but it is still lacking in the part where I sit around eating bon-bons and watching Oprah Money Hour.

While Captain Adventure could take the bus TO school, the part where he is taken BACK HOME is problematic. You see, he gets out of preschool at 3:00; at 3:00, I am already sitting in Homer the Odyssey in the parking lot at school, where I have been since shortly after 2:00. BECAUSE, Danger Mouse gets out at 2:20 and I am to pick up Boo Bug “before the school-age children arrive” because this is when Kindertime ends and Daycare begins and she is not in Daycare, she is in Kindertime.

By the time I’ve gotten those two, it’s at least 2:30, and often 2:40. Now I’ve got anywhere from twenty to thirty minutes before Eldest gets out at 2:55. Not really enough time to go home…so, we just stay there and wait…and wait…and wait…because Eldest takes about fifteen hours minutes to get from her classroom
allllll
the
long
weary
and
with
oh
so
many
distractions
waaaaaayyyyyyyyy
to the parking lot.

The earliest I could reliably be home to greet Captain Adventure as he descends from {angels singing} The Bus {/angels singing} is 3:30.

SOMETIMES, I’m home by 3:15. SOMETIMES, it’s almost 4:00. IT JUST DEPENDS, on everything from how long it takes Eldest to walk out from her classroom to which teacher caught me to talk about what horrible/splendid thing one of my kids did to getting stuck in traffic because some idiot must turn left out of the parking lot (though warned with stern ‘RIGHT TURN ONLY: CVC # 28672867286728671!!!!!!’ signs in not one, not two, but THREE places around the driveway) and cannot understand that until THEY move, the INTERSECTION IS BLOCKED.

See, it’s like that whole ‘circle of life’ kind of thing. Cars go into the driveway, around the pickup lane, and then out. Ergo, if the cars going into the driveway are blocking the intersection because the lane isn’t moving, and you’re sitting at the FRONT of the lane waiting for them to move…we can see the problem? Oh, we can’t? OK. We’ll all wait for it to dawn on you…because we have no choice…

Now, while it is entirely probable that at worst I would be skidding into the court just as the bus driver was coming back from having beaten on my door in a state of perplexity (“What kind of mother isn’t home to meet The Bus?!”)…it is also possible that fairly regularly we would miss The Bus entirely and I would have to drive back to the school for a sound scolding about the importance of The Bus and its time and that I should never, ever stand The Bus up like that again.

See, I just don’t want that kind of stress in my life.

It’s easier to park in the parking lot, pick up the first two, let them watch cartoons in the van for half an hour (forty minutes) while I knit and wait and wait and knit, and then we all walk over en masse to pick up Captain Adventure and yell across the quad at Eldest to hurry up, we’re not getting any younger over here!

Well, what would be easier would be if all four of them could take a bus. You know, I walk them out to the corner and the bus comes along and I hug them and they get on the bus and some hours later, I walk back out to the corner and here comes the bus and there is more hugging and perhaps we all sing a chorus of Kum Ba Yah and then we have snack.

Glory, hallelujah.

But, no. First of all, it would set me back $405 a school year for the older three Denizens – IF a bus were available to them. But it isn’t. Because you have to live 1.2 miles from the school to be on the route, and guess what?

We live 1.1 miles from the school.

Fie.

I surely do hope they’re done telling me about The Bus now. Because it is starting to depress me. Especially when you can’t do it just one way. If he can’t take it both ways, well, forget it. But! He should take it both ways! Because The Bus?

Nirvana.

**sigh**

In other news, the Yarn Monster is alive and well. While trying to pen this, he has given me three skeins of acrylic, one of Brown Sheep worsted, one of Cheryl Oberle’s Dancing and kept for himself a Lorna’s Laces and a ball of raw silk.

Little monster.

Oh crap. Now he’s after the sock yarns.

OK, so, uh, later!!

Get outta that Schaefer Anne, you little twerp…!

Preschool at 12:00, Captain!

Today was Captain Adventure’s big day, the day on which the gathered professionals would give us their professional opinions about what (if any) professional intervention he needed to make up for my bad parenting overcome the bad genes he inherited from me move him out of this strange world he’s mired in and into this so-called ‘real life’ we humans have invented for ourselves.

So first they gave me the run-down on their test results, which they were anxious to assure me were to be taken “cautiously”, because, duh, he’s only three. They tested a three year old, and he didn’t necessarily ace the test, WHAT A SURPRISE! He can do a lot of these things we did not observe, they said. Blah blah blah.

And then they laid on me that my three year, four month old son tests to about a one to one-and-a-half year level on everything from speech and language to social skills. His motor skills are all over the place – on some tests, he comes back at that one year level again, on others he’s either at or even above age level.

I wasn’t surprised at all. If you asked me, that’s exactly what I would have said from my position of Not A Professional, Nor Do I Play One On TV. As his mommy, I would have said that my son talked like a baby of 18 months old-ish.

I still wanted to cry, though. And get all defensive and try to bring up whatever-all he’s done lately that was so definitely better than that.

I’m not sure why I do that. I want my boy to get whatever help is appropriate for him. Sugar-coating his issues is not helpful. I want other people to take his problems seriously and HELP US DAMMIT.

So why I find myself going all weepy and denial-y whenever someone agrees with me that he has issues that need intervention, I cannot begin to fathom.

Anyway, after they laid their results on me (and I resisted the urge to argue with them), they then made their recommendations.

Get the paperwork filled out right away, because the boy is eligible for and welcome to the special needs preschool, Speech and Language Edition. This is a pretty heavy-duty program (for a little guy, anyway), five days a week, three hours a day. There is speech therapy, physical education, preschool curriculum including pre-reading and pre-math. I was hoping and praying he would be invited to go, because I had heard incredible things about it from other parents around town.

He starts the week after the Thanksgiving break (eep! that’s so soon!), and these lovely ladies are really expecting that he is going to take to it like a duck to water and that we will start to see his speech and language and social skills ramp up at an incredible rate.

I believe them, because frankly his progress just here at home with me has been incredible already. He’s even lost most of his separation anxiety over the last couple months. He runs right into the speech therapy center without a backward glance and has a rockin’ great time without me (sniff!), and loves to go to the daycare at the gym.

This being only three hours a day, I’m pretty sure he’ll be fine.

I, on the other hand…may be sniffling into a hankie a lot the first couple weeks. I mean, don’t get me wrong: I am very much looking forward to those roughly two hours a day I will have with no Denizens clinging to me. I can get my nails done, do my grocery shopping, pay bills, whatever – without either having to turn on the Electronic Babysitter or repeat “Mommy is busy, please go play for a little while” eleventy-zillion times, or dragging them along and then saying, “NO!” every eight seconds for the duration of the outing.

Sometimes, I just want to grab the milk and some bananas and get out of there, without having to defend my decisions to a gaggle of over-opinionated children.

But still…I am very protective of Captain Adventure. That thing where I agree that he’s like a one year old baby? That’s kind of how I view him, and I coddle him as such. Whiiiiich of course makes it a darned good thing that they will be prying him out of my over-protective cocoon. I wouldn’t be a bit surprised if a lot of his delays are because I enable him in them.

**sigh**

But then came the part I was pretty sure was coming, but was hoping against hope they were going to dismiss as impossible. This is the part where I once again start arguing and denying something that I have demanded and insisted be looked into for my son.

There are still concerns about autism.

The problem is, the few behaviors he has that could maybe might be signs of autism are also classic signs of a frustrated three year old who can’t figure out how to communicate with people. He doesn’t always do any of them, and most of them only occur when he is tired, sick, over-stimulated (say, at parties) or otherwise off. None of them are the obvious signs, but many of them are “troubling.”

Instantly, I’m getting all defensive and arguing. But he doesn’t do this or this or this! And he does do that and that and that! Sure, he’s a little odd, but he’s only three! He’s getting better!

I have to sit there and say to myself, over and over again, that what I want, what I’m there for, what I have fought for and argued for and otherwise made a pain in the butt of myself to get, is precisely this. For this group of skilled, experienced people to give him a good hard professional look, and tell me what to do for my boy.

We are still walking his path together, just as I am with his sisters. Sometimes, the paths are easy (having Eldest tested for GATE, for example, is easy-peasy). Sometimes, they aren’t so much fun. Denial is not going to make it all better. I don’t have to like it, but I do have to walk down these various possible paths with him to see where they lead…if anywhere.

I’ve got to keep walking onward, even if what I want to do is snatch him up and run back home and pretend there’s nothing wrong, and that his path is no harder than anybody else’s, and that absolutely without any extra work he will be just like any other five year old by the time he’s five.

So onward it is. To preschool, and more assessments, and more screenings, and more “now, does your son do this? and that? I see…what about this other thing? No? Are you sure?”

Which I very much want them to do.

And it would be much easier for them to do it if I were not so busy sticking my fingers in my ears and shouting, “LA LA LA I CAN’T HEAR YOU!!”

The things I sometimes wonder

Sometimes I wonder what would actually happen if I were to throw in the towel. You know, just say, “Hey, know what? This whole wife-n-mom thing? It’s been real. But I quit now. So, have a good life and all, eh? Toodle-pip!” and then I jumped into the nearest bus and went wherever it was going and started a new life. As Bambi the Super Waitress.

We had Captain Adventure’s home visit today. The ladies were sweet and they played with Captain Adventure and observed his reactions to them (he was pissy, I think he’s got a cold or something) (he napped today, people – definitely some kind of sick going on there). And then they started saying, “So, we’ll need to do the actual testing later, and we’ll arrange to do this, and that, and this, and that, and this other thing, and then you know that we actually have a LARGE NETWORK OF PROGRAMS, so in addition to the preschool there are blah blah blah…”

It was about this point that I suffered a bout of vertigo and had to sit down.

Don’t get me wrong: I am on my knees grateful not only that these programs exist, but that these people are so anxious to make sure that Captain Adventure is put into the correct one(s) ASAP.

I am thankful to them for their eagerness, their kindness, their exuberance.

Also, I think I need to go throw up.

My Daily OM horoscope today said, Because you are likely tired after shouldering a great many duties, you may find it difficult to accomplish much at home or at work. To refresh yourself so that you can continue achieving your goals, you will no doubt need to take a critical look at the schedule you have adopted. Even if you find scant opportunities to pare down your agenda today, you may still be able to prevent similar fatigue in the future by making a commitment to yourself to take on only what you can and no more.

To which I reply, “@*^&@ you. @*^&@ you all.” Because I am mature and enlightened and some junk like that.

See, the thing is, I’m looking over my agenda (which is a damned fancy word for what I do all day) and I’m not seeing a whole lot of trim-able items in there.

“Right, let’s see, I’ve got to cut something out…OK, Madame Kindergartener, from here on out you take yourself to and from school and take ownership of your own snack and homework.”

See? It doesn’t really fly.

And when these lovely ladies started telling me about the preschool program (3 hours a day, five days a week) and then of course there will likely be more half hour one-on-one sessions (three to five times a week instead of once) AND they have ‘other programs’ he may be qualified for, well.

You can see why I might become a tad agitated, yes? Especially when all FIVE of my children (including the 6'3" one) are suddenly demanding all kinds of extracurricular activities that are going to be slicing huge chunks of time from every conceivable moment I might otherwise have to sit down and fan myself while sucking down gallons of vodka and cranberry juice - all of which activities I am required to actively manage and/or enable.

**sigh**

OK, all ranting aside, I am actually considering my options. Perhaps an after school program for the older two (that would run me $260 a month), and/or an after-kindergarten program for Boo Bug (ouch – about $500 a month) (ouch) (seriously, my wallet is killing me, people). Or a maid service to lift the burdens of housework from my shoulders ($400 – 500 a month) (OW!!), although what I really need is an old-fashioned maid of all work ($Priceless). Somebody who comes in every single day and cleans up everything. A maid service will clean, but you have to do the picking up part. You’ve got to get the dishes off the counter, or they can’t clean it. And if there are more than a couple toys on the floor, well, they’ll leave you a note saying, “Couldn’t clean floors – please tidy first next time!”

True story, I had a neighbor who was fired by her maid service. She never picked up so much as a sock off the floor, and had two extraordinarily messy children. For weeks we heard the sad tale of how the maids just didn’t do the job right, and then suddenly she informed us that they had called and said they were very sorry, but they just couldn’t come clean for her anymore.

Great. Something else to add to my ever-growing list of Things I Fear: Being Fired by the Maid Service.

ANYWAY.

Something is going to have to go.

Maybe it should be me. Maybe if I just left, everything would be simpler. They’d all just figure out their own little lives, and be happier and more self-sufficient for it! Yes! I think I’ve hit on something here!! For the good of my family, I need to run away from home!!

…how much is a bus ticket to Anywhere these days…?

And now it is tomorrow

Today went about as well as could be expected, which is not all that great, but we all made it through in one piece so whoopee and pass the chocolate.

Every Monday, as I believe I have ranted (at great length) before, is an ‘early release day’ for our particular school. Some schools have these on Wednesday. Some on Friday. We drew Monday.

On the one hand, I’m glad it’s only one day a week, and the SAME day every week. Because if they moved this around on me, I’d be doomed. On the other, well, guess what day was chosen as the best day for Captain Adventure’s speech therapy? Oh yes. Monday.

And yes. I was thrown out of the room today. In the nicest way possible, of course. But while his therapist was trying to get him settled, he kept coming over to me in the corner, taking me by the hand and dragging me back over to them.

“Oh, heh heh, I was gone this weekend, he’s slightly more clingy than usual,” I announced.

“Oh! Well, you know what, let’s just have you go ahead and leave then!” she replied brightly. So I gathered my things, gave him a peck on the noggin and went into exile in the waiting area.

Captain Adventure did fine. Me, I was freaked out. I spent the first few minutes listening intently to see if I could hear wild screaming or other sounds of distress. Nothing. Eventually I sat down and behaved myself until she threw open the door, and he barely acknowledged my return. Granted, there were stickers happening, and choosing a sticker is a heady matter not to be interfered with by silly stuff like your mother returning from whatever mysterious place she vanished off to without a trace.

He did actually talk to her (a little) (at least, enough to get a goldfish ‘cwak-quer’), and apparently treated my disappearance as big old “so what”.

Honestly. You just never know, ya know? Sometimes, I can’t even go to the danged bathroom here in our very own house without the final scene from Gone With the Wind being replayed on the other side of the door (“Mommy! Mommy! Whatever shall I do?! {swoon!}”). Other times, I leave him with a relative stranger in a relatively strange place and completely leave the room, perhaps for a trip to Mars, and he’s all like, “Whatever, woman – bring cwak-quers when you come back, eh?”

But it is encouraging, too. I'm already delighted that we haven't had a repeat of the extreme anxiety he had after my trip to Arizona a few months ago, and having him willing to let me just walk on out of the room the day after I got back from another weekend away is marvelous. He's making huge strides, for such a little guy.

Now if I can just get over MY separation anxiety, we'll be golden...