...And in the air, the fireflies, our only light in paradise. We'll show the world that they were wrong, and teach them all to sing along; singing Amen I, I'm alive. Amen I, I'm alive...

- Nickelback, If Everyone Cared

For All The Right Reasons Album



And I'm singing Aaa-ayyy-men, I'm alive!







William Leonidas November 12th, 2009
My only regret is that I cried so many tears while I waited for you.


"...I'll try ~ but it's so hard to believe. I'll try ~ but I can't see what you see. I'll try and try to understand the distance between the love I feel ~ the thing I fear ~ and every single dream. I can finally see it. Now I have to believe all those precious stories. All the world is made of faith ~ and trust ~ and pixie dust. So I'll try ~ because I finally believe. I'll try ~ because I can see what you see. I'll try, I'll try ~ to fly..."

Jonatha Brooke "I'll try"


Fear thou not, for I am with thee; be not dismayed, for I am thy God; I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10




Lilypie Second Birthday tickers
Now the word of the Lord came to me saying, "Before I formed you in the womb I knew you, and before you were born I consecrated you..." Jeremiah 1:4-5




For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. Psalms 139:13-14



Monday March 5th, 2010

So Why Stinkerie?



It's simple, really. It's the first thing I whispered against my newborn little Dumpling's temple as I held him alone for that very first time. "There's my Little Stinkerie." And all was right with the world as I brushed my lips across his delicate dewy soft newborn-pink skin and sniffed at his sparse smattering of downy soft hair. Corny and sappy, huh? I can't help it when describing my new Little Puppy. But don't get used to it - I have been told I am "irreverent."



Anyway, it just came out and he's been Stinkerie ever since. As well as Stink Pie, Stink Pot, Stinkey Pete, Little Stinks, Stinks, Puppy, Ducky, Baby, Baby Head, Baby Head Jenkins, Jack, Jack-Jack, Jackie Boy, Jax, Snork, Snorkis, Snorkle, Billy Boy, Billy Bob, Bobby Sue, Billy-Joe-Jim-Bob, Will, Willie, Willister, and the name given by my mentor turned friend Beth - Snake. When I write to her I call him either The Snakester or Slither! And of course, Dumpling, because he is my Little Dumpling - warm and soft and comforting. It's alright to combine comfort food with baby names, right? Have you ever watched the movie Where the Heart Is? If you have, you'll know why I mention this in my defense!



Long story short, you're likely to encounter any one or more of these names in a single post. Because I can. It's my blog!





Something to Consider

Bad decisions make good stories.

Something to Think About

With any pregnancy, there are concerns. With any child, there are worries. When you have a diagnosis of Down syndrome, you know what to worry about. You know what to look for. You have a plan of action. With your typical child, there is no limit to the things that can 'go wrong' or 'happen.' There's no place to focus your worry and concerns. 'IT' will always be out there, waiting. You'll always be on guard. Even when the child is 55 and has grandchildren. With Down syndrome we have a battle plan. With Down syndrome, there is a finite number of things that can go awry. With a typical child, there's isn't. It's a crap shoot. I'm sticking with the Ds and taking the other two back to the hospital for a refund.

Head Above Water


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Thursday, December 16, 2010

My Little Artist






In 1881, an infant was stillborn and the midwife who delivered him declared him so. The grieving father, after comforting his wife for a moment, went to tell the baby's uncle that his firstborn son was born dead. The uncle raced to the birthing room and breathed cigar smoke into the baby's lungs. Moments later, the baby started to breath on his own. The parents were advised to send the baby away, that he would never be normal, that it was an abomination that a baby who was born still should be brought back to living. The parents kept their baby and raised him to adulthood. The baby, now a grown adult, changed his sir name to his mother's more melodic maiden name. The baby born Pablo Blasco is the famous painter, Pablo Picasso.

Wednesday, December 15, 2010

Leaps & Bounds

Okay, so Jack isn't crawling yet, and he's not even sitting up on his own yet. He will get there. Yesterday during both PT and OT, he pedalled his little hands forward while first Jean, and then Beth moved his knees forward in the quadriped position. It's a start! Today during Baby Class, he let go and put in three times! Three times! What a huge thing that was not only for his Mommy but also for Miss Em's Mom and Beth! Who knew such a little thing would make me so proud?! Today during vision therapy, he sat on our soft couch for full minutes without falling over! He was sitting nice and tall for Laurie, and I don't know if you can tell from the photos, but he isn't being supported by the back cushions. Maybe his little round butt just fits the couch perfectly so that he can correct and maintain his own balance! A few times he had his hands on his little knees, and when he started leaning to the right, he'd push his right arm down on his right knee and correct the motion...same thing when he veered off to the left! My theory is that his arms are just too short to do the traditional supported sit!





Pictures

I've gone back as far as December 3rd! Scroll down! And keep coming back for more...I'm on a roll!

Tuesday, December 14, 2010

Scrambled Eggs

So far, so good!
He ate about 8 tiny little pieces, made mashing motions, and swallowed them down!
Bites 9, 10 & 11 got pocketed and then spit back out all at once!
He's really not a morning baby, and he was more interested in just playing with his spoon!

I Hab a Code

A code. A Code. A CODE. In by dose. By dose! BY D-O-S-E! On by pace! By dose! Duh! Hab you neber talked to subwun with a code bepore? Geeesh!

And that's going to be my excuse for not posting. I have pictures. We'll see what the day brings.

Sunday, December 12, 2010

Baby Butt!!!!

Lately The Fuzzy Duckling wants to be on his tummy in the bath! Convincing him to stay on his back at least long enough to get washed is better accomplished if I give him lots of tummy time first!

He does a great job of keeping his face out of the water, but now he's learned to aim for it and after the initial thrill of the splash he comes up all red faced and sputtering and spitting bath water out of his nose...
...so I keep my hand under his chin when I see him getting ready to dive bomb the surface!
Oh that tushy!!!!
Little nekid baby butts are just one of the treasures of being a baby...like two little lumps of bread dough set out to rise!
Here he is after the wash and shampoo, back on his belly!
No, that is NOT a poopy particle! I swear it's a chip in the fiberglass of the tub! I've been able to edit it out of most of his bath photos, or cover it with a cloth before, but here he is inspecting it, and I didn't want to discourage any sudden flourish of fine motor activity...you know...in case he suddenly decided this chink in the tub was worthy of an attempt at pincering! (He didn't though! Just stared at it and yelled at it a little!)

After the bath, it was time for some snuggling with his big brother!
They are becoming Babe Ruth aficionados!
I love that The Middle is always so willing and eager to read to his baby brother. At least once a day I can find them with their heads together in a book! In fact, when The Middle's behavioral therapist is having a tough time getting him to do his homework, all she has to say is, "Would you like to take a five minute break to read a book to Willie?" The Fuzzy Headed Duck gets read to, The Middle gets to feel valued, and the reading portion of homework gets done! Check, check, check!

Saturday, December 11, 2010

My Head Is SPINNING!

Spinning, I tell ya! Of all the What did you just say? moments this past week has had, tonight's offering was by far, certainly the whopper. And it came from the mouth of My Beloved. Yup. The Dear Daddy himself, thank you.

Let me explain. We went out to get our tree tonight. It's up and waiting to "settle" it's branches a bit before the kids tear into it first thing tomorrow morning. After some grub and the usual sleepy time ritual, along with night time meds, The Olders were fast asleep. Jack, as is par for Jack in the later hours of the day, was in full swing with his bad self, rolling, rocking, jabbering, playing and having a grand old time on the floor with his toys. The Beloved asks, "Are you disappointed he wasn't a girl?" So I say that I'd initially really wanted a girl, but we got a boy and now that he's here, he's good. He's really, really good! I love my boy! I sit down on the floor next to him to play. And I said something about how girls with Ds are much more fertile than boys with Ds, so all in all, I'm glad that he's a boy. And that's when it happened. The Beloved asked, "Why? Do you think it would be bad if he had a baby? What are the chances that he'd get a baby just like him?" In my ignorance I said that with his kind of Ds it was almost certain that any baby he had would also have Ds. I have since researched more carefully, since I can't sleep yet even hours after that bombshell, and I stand corrected. The search results have not lent me any comfort.

I was flummoxed by the here-to-fore Voice of Reason having so very recently taken leave of his senses that I really didn't know what to say. Do you think it would be a good thing? To which he said, "Think about it. We've had so much fun with him, maybe he could have a little baby like him some day to love that would make him really happy!" Really? I ask. So if Jack has a baby when we're 75, that means we get to die when? When we're 135? Because if Jack has a baby, we're going to be starting all over again with a newborn at an even riper old age! To which The Newly Insane responded, "Look at him. He's got it going on. He's smart. He's better off already than some babies we've met. You don't think he'd know how to love a baby and take care of it?" He further went on to say that Jack would be capable of caring for himself and a wife one day, why not a little baby too. "And we can play with it and have fun with it and love it and spoil it rotten and send it home!"

S-P-I-N-N-N-N-N-N-I-N-G Who is this man? We had this discussion. In the middle days of my pregnancy with Jack I'd read a statistic the 70% of girls with Ds were fertile but that only 12% of males with Ds were capable of reproducing. My numbers may have been off, because it was all about the numbers before we had Jack in our arms, but we had both agreed that this baby having babies was not a good thing.

Okay, so now that I've snuck out of bed at 2:12 in the morning to research, the stress/relief ratio is about 50/50. According to most sites, males with Down syndrome can and do have babies with the typical 46 chromosomes, as do women with Down syndrome. What is uncertain, in the specific case of a man with typical generic plain old trisomy 21 who fathered a typically chromosomed baby, is if the Mother of this baby also had Down syndrome or not. The study didn't say. Neither did I find that of the women with Down syndrome who gave birth to babies with 46 chromosomes, were they fathered by men with Ds. Again, no information.

And there's the rub. What if Jack wants to marry and have babies? What if Jack does marry and have babies? What if Jack wants to have babies, but either he or his wife are unable? And if they are able, and do, are her parents going to come after us in the middle of the night with butcher's knives for encouraging our developmentally challenged children to reproduce? And what of the baby, or babies? Should we hope and pray for a typically chromosomed baby or one like Jack and his wife? Would a baby with Down syndrome be easier to care for than a typical baby? Would Jack and his wife be capable of caring for a typical baby? I don't know the answers to these questions. I shouldn't need to know the answers to these questions!

In November I'd planned on writing a sappy post called Gratitude about how The Beloved shines with Jack. It never happened, and I know I've been slim on pictures. But dang it, if life could just throw a few curve balls (Or basketballs!) somewhere else for a few minutes, I could get back to posting pictures! So the post about Gratitude isn't going to happen. I've said it all here. The Beloved fully believes in Jack, and as far as his Daddy is concerned, the sky is the limit for Jack. That's all I've got to say about it. Which is not to be construed as me being on board with Jack having babies. The jury will be out for a long time on that one.

Friday, December 10, 2010

Attitude

So...tonight The Dearest and I were all trying to get The Littles out the door to go pick out our Christmas tree. On any given day and for any given event, even just to go to the danged mailbox forcryingoutloud, this is a process. You guys go get your shoes and socks on. "Me?" from both of The Olders. Both of you, go get your shoes and socks on! "You know Mom," from The Middle, "We've had this discussion before. That is not a correct statement. The directive really should be to get our socks and shoes on. Because you have to put the socks on first." Yeah, yeah, you've said to me about 52,000 times now. If I didn't say socks last, you might forget and then you'd have to start all over. Either way, go get them on. And both of you need to go to the bathroom. "Me?" Again from both of The Olders. Both of you! Go pee! "But she's in the bathroom already," from The Middle. Well, either wait 'til she gets out or go use our bathroom. "But I don't like your bathroom." Then wait until your sister gets out and use your own bathroom. Either way you have to go pee before we leave. "You know Mom. It would have been really handy and time saving if God had made us without the need to go to the bathroom. And just think of the money we'd save on toilet paper." So you've said honey, but if it wasn't needing to pee it would be needing to do some other thing. "Does he have to come with us?" from The Girlie. Yes, he does. "Then do I have to go?" from The Girlie. Yes, you do. "It's just...well...he bugs me." So you've told me, go get your shoes and socks on. "Mom!" from The Middle, "I just told you, it's supposed to be socks and shoes!" And yet, I still say shoes and socks. I'm old and set in my ways. Go get yours on! And this is what we go through countless times in a week. Only tonight, The Olders didn't need to be harassed, harangued or harried to get out the door. We were getting that most venerated symbol of the Christmas season, The Griswold Family Christmas Tree, and they were all lined up, spit shined and ready to go in record speed. It was Jack who decided to throw the monkey wrench into the works. This came on the heels of a few days ago when The Dear Daddy was laying on the floor, tapping Jack's piano for him. After a few taps, Jack swiped The Dear Daddy's hand away and went at it himself. Deciding that it may have just been a fluke, The Beloved tried again to tap a few notes...Jack grabbed his shirt sleeve and flung his hand away. He flung it away! Pretty much not a fluke! He wanted to do it himself, thank you! And for about the last few weeks, if the bottle is not produced and in his mouth within a nanosecond of the gas drops being given, Jack pitches an outright fit, convinced that he will in fact starve to death any second. Since turning one, he's developed a knack for throwing a myriad of little fits, for a myriad of reasons.

So back to tonight. It's cold here. It's night time. It's windy. We're going to be outdoors. At night in the cold wind. Jack has no hair. So I put a knit cap on his fuzzy little head. And he pulled it off with a big grin. He's been trying to turn this hat thing into a game he's determined to win for about two weeks now. So, I put it back on his head and said "No!" and gave him the sign for no, just for good measure. And off it comes again. And the big grin again. And while he's sitting there all strapped into his protective car seat, we proceed to repeat this process a good ten more times, because I want to protect his head and ears from the chill and wind. The Dear Daddy is starting to glaze over and The Olders are grousing at the door.

Right about the dozen-th (Is that a word?) time he pulled the hat off, I smacked his darling little hand. Said and signed "NO!" Raised eyebrows from The Dear Daddy. Dead s-i-l-e-n-c-e from the front door. Questioning look from Jack. By the time we've repeated this new process about four times, Jack decides it isn't fun and gives a pissed off cry and the pouty lip and pulled the hat off of his head again! So I smacked his hand and put the hat back on, again! So, fast forward about ten more times and Jack is now patting the hat, giving me the pouty lip and then starts his pissed off cry as he's pulling it off again! Lather-rinse-repeat. By the time he's decided to just pat the hat and give me the pouty lip, but not pull the hat off, The Beloved finally speaks up in a disapproving tone and says, "That might be a little much for him." For him. So I ask, Would it be a little much for him if he didn't have Down syndrome? "No." says he. And Jack took advantage of the opportunity to pull the hat off again. Lather-rinse-repeat. Say and sign NO! smack the hand, put the hat back on. Jack cries bitter angry tears for about 2.5 seconds. But he left the hat on! And we finally get out the door and get everyone buckled and harnessed in and off we go.

Once we arrive at the tree lot, I flip Jack's car seat and get him out and put the danged hat back on. I knew he'd pull it off once we were in the car, but once we're out of the cold and wind it doesn't really matter all that much, and what am I going to do about it from the driver's seat anyway? And we've been doing this fun little game for about two weeks now, so I knew the hat would be off. I got him bundled in a blanket in my arms and off we went. The lights, music and smell of popcorn from the tree lot was a sufficient distraction that he didn't pull the hat off. He was however, trying to see anything and everything all at once, and that fun little backward C maneuver he does had me doing double duty to keep him from flying right out of my arms. I flipped him around to face forward and we started picking out our tree while The Olders ran amok, excitedly shouting for us to come see first this tree, then that one. The Middle wanted to buy 12+ foot tree he was craning his neck to stare up at! He was so excited to kick off Christmas! Jack's little head was turning every which way trying to take it all in. The tree lot guy saw me replace the hat about 60 times just because Jack's head moving against my shoulder kept dislodging it. And holding an excited wiggly baby with one arm and trying to replace a stray hat with one free hand is a trick! The tree lot guy offered that we go stand over at the blazing pot bellied stove merrily crackling away while he passed out candy canes to The Olders. I assured him we were fine, that the baby was just so taken with the bright twinkling lights, he kept rubbing the hat off against my shoulder. The Beloved took over Jack and I went to round up The Olders. We found a really good tree and while I paid the tree lot guy I was watching The Dear Daddy have quite a go of keeping Mister Wiggle Boy from falling out of his arms and onto his head! He had him facing toward his chest, which had Jack doing the backward C back arching thing. Toss in the now stretched out hat that kept slipping and a quilt designed to keep The Little Bean warm, and The Dear Daddy suddenly needed six extra arms! I used the excuse of rewrapping Jack's quilt around him to face him forward in The Dear Daddy's arms. Much better.

By this time, the tree lot helper had started trimming the bottom of the tree and would soon start nailing a sturdy plastic bucket and stand to it before he was ready to heft it over to the van. The Beloved and I exchanged a glance while he fished some money out of his pocket, trying to contain Jack in all his excitement. Do you want me to take him? "No. Give this to the guy when he's done, for a tip. Let him know he's appreciated." He was a young man, probably in his early twenties, with an over sized head, well over 6 feet tall with a broad chest and large arms, and clearly had some sort of developmental disability. The tree lot guy had spoken quietly and kindly but slowly to him, telling him what needed to be done. He kept his eyes down, listening, but gave one quick nod and went about his work with such extreme care that both of The Olders had gathered round in revered silence to watch him work. Were these two attentive little well behaved still-standing children really my little hoodlums who had minutes before run shouting and screaming willy-nilly through the tree lot? The Girlie was so delighted to hand him the tip and say "Thank you! Merry Christmas!" Jack was giving his Daddy a run for his money, and I noticed that the hat was now in his grubby little grabbers and being stuffed into his mouth. His little legs were drumming to the beat of the Christmas carol and his whole torso was swaying back and forth to the music. The protective, warmth providing quilt was now wadded up under The Dear Daddy's arm. Jack was in a blanket sleeper and could not have cared less that his now bright pink cheeks were getting chapped and his thin little hairs were dancing around his head in the gusts of wind. The Beloved saw me taking in the scene and just shook his head in quiet defeat.

As we headed to the car, Jack let out a screech that would make wolves howl. I turned to see his body first go rigid and all four limbs jerking and then his little body flailing and bouncing up and down against The Beloved's chest. His face was red and crinkled up in the kind of fit he only throws, to a much lesser degree, when Princess walks away from him. Here's a milestone for ya! He was throwing his first tantrum! "Stop that right now, young man! I know you don't want to leave, but it's time to go home." I took Jack while The Beloved retrieved his hat from where he'd dropped it in the dirt and started getting him buckled into his seat. The tantrum was short lived, and he was now just sporting the pouty lip while tears glistened on his eyelashes. The Beloved handed me the hat to put back on his head and Jack reached up to pull it off. "No!" from The Dear Daddy. Heart broken whimpering from Jack. He clearly had not wanted to leave the bright lights of the Christmas tree lot. He'd never heard his Daddy speak sternly to him before. I think his monumental sized first tantrum was broken by that fact alone. Poor Jack. Poor pouty lipped little Jack. It was a big night for him.

Once home, the tree was set up in the front room, with water in the bucket to await decorating in the morning. The Olders had gone to their rooms to get jammied and teeth brushed and start the bickering process of picking out a movie. Jack was settling in with a bottle. The Beloved had shucked his work boots and was getting comfy on the couch, relaxing after his long day at work, all tasks for the day completed. He looked over at Jack happily having a bottle in my arms, his earlier heart break now long forgotten, and asked rather mournfully, "What happened to our sweet little baby? He was a real butt head tonight!" I was sympathetic in saying It's just another developmental milestone. It's going to be like this for a while. Poor Dear Daddy.

First Candy Cane!

Guess who gave Jack the candy cane? Hint: NOT THE MOMMY!




The Dear Daddy strikes again!

A Boy, A Bottle & A Blankie

Okay, so it's really a spitty cloth...but doesn't he remind you of Linus from The Peanuts??If he doesn't grow some hair eventually, he can be Charlie Brown!

Sunday, December 5, 2010

Bumpy

It's been three weeks since the pink was added to my tattoo. It's been five weeks since The Beloved got his all in one sitting. His is a good 15" X 10" and at it's narrowest margins is much wider than mine at it's widest margins. His was healed perfectly within a week. Wound care instructions were aptly named. He didn't think of his as a new wound, even one that he's willingly gotten. I on the other hand continue to think of it as exactly that. A wound!

For round one I was only stabbed 52,000 times for the blue writing. The instructions were to remove the dressing after 2 hours and wash with antibacterial liquid soap, pat dry. Do this every four hours for the next four days, applying a thin coat of Aquaphor after each cleansing. After four days the scabbing should be minimal and then we were to apply Eucerin cream and rub it in well. The Beloved got his completely finished in one sitting, the same night I got round one. I know for a fact that he neglected his wound care because he flat refused to let me cleanse it after the first two times. I was diligent with mine, partly because I'm a nurse and partly because it hurt like a sonofagun and the warm water was soothing. Plus, I was absolutely fascinated with it!

So two weeks later we go back to the tattoo parlor and The Beloved gets the thumbs up that it has healed so quickly. I sit down to endure a full two hours of the pink ink stabbing. Midway through the H at the top right, I finally say that the blue didn't hurt nearly as bad as the pink does. Matt, the tattoo artist says, "Yeah. You didn't bleed as much that time either." Finally he decides to change out this brand new needle for another fresh out the package brand new needle. For a while it stops bleeding but it remains every bit as painful. Eventually it started bleeding heavily again, by the first letter of the second word. I was having visions of leaving and spending the rest of my life with a nonsensical half finished tattoo when Matt speaks up with a quiet voice but a straight face and says, "I don't know why it's hurting you so much. Are you having your period?"

My first thought was that this very young man, twenty or more years my junior, was sitting here calmly inquiring about my menstrual cycle with a straight face. Just as quickly, I appreciated the fact that he knew enough about his art to know that women are more sensitive to pain before and during their periods. "No. I already knew about that. Never do painful procedures like hot waxing right before or during your period." "Oh" he says. And we continue.

So it was no surprise to Matt when I popped into the parlor yesterday to inquire about what I thought surely must be an allergic reaction. All of the pink is bumpy and after three weeks, it still itches ferociously! He took one look at it and said that it was still scabbing, that I'm a slow healer, and pointed out the lighter, smoother areas where my shirt sleeve rubs. Even that area is still scabby, but eventually, all of it will look lighter in color. "It just takes time to heal, and you have delicate skin, so it's going to be longer." He pointed out the first bar in the F where the scab has fallen away and said not to worry. He said he's seen slow healers before, but that yes, it was taking me a bit longer considering that the lettering isn't that wide.

So while I'd hoped to post the completed work by now, here's what I've got so far!

More Goofiness!

Lately, Jack likes the cover his ears and holler as loud as he can!And the bruise on his head resulted from trying to see his feet while rocking on the tile floor...he under-estimated the trajectory of that giant noggin!
Hollering, ear covering and glute tightening exercises!

Friday, December 3, 2010

About Last Night

Yes I know there's a movie of the same title. This isn't that kind of post. Back in May I wrote Last Night, trying to get some of my wrath out. It's a long post about a couple of parents who should have known better, and more toward the end, a couple of people at My Middle Little's school, the vice principal and the district nurse, who both certainly should have known better. I unleashed my wrath at the former, but I really had to hedge in my anger to the latter. They'd done something horrible to our family and I was simply too wrung out to write about it at the time for one, and too cowardly to revisit the fears doing so would require, for another. So I wrote about their lesser offense and curbed my tongue. Comments have given me the courage to finally write it all out. It's long. You'd better get some coffee. And a snack. Maybe a thermos and a meal. Take some vacation time. Divert your mail. Stop your morning paper for a while.

I ran into the district nurse this morning. I won't have to deal with the vice principal again until The Oldest changes to Middle School next year because she changed schools. As if Middle School won't be bad enough, eh? Okay, so About Last Night...

...early in February this year the Middle Little was rockin' out his ODD (Oppositional Defiant Disorder) and really having a time with himself. As a matter of routine, the kids line up for their morning meds first thing before breakfast. It's a safety feature, this routine, based on another incident two years prior. Hand them the meds, watch them swallow. I don't forget to give them to them and they don't forget to swallow them. And yes, forgetting to swallow a pill in your hand does happen with the variety of acronyms my kids carry as labels. The Girlie only takes meds on school days, but out of necessity, The Poddest of Pods gets dailies. I gave The Girlie her meds and handed The Pod his. And The Pod took the Girlie's med cup out of her hand and swallowed down the pills, setting his on the table with a sing song, "I~took~your~meeee-eeeds! Now~you~can't~take~theeeeeee-m! I~took~your~meds! Now~you~don't~get~aneeeee~meee-eeeds!" Great. But also, no big deal really. I had more meds for her, and what he'd swallowed of hers were actually less than half doses of the exact same meds he'd been on just the previous month. So, I being the nurse that I am, separated out the various drug categories from what he should have taken versus what he'd actually swallowed, gave him what he was missing from his daily routine. Got lunches packed and back packs stuffed, breakfast fed, etc, and got them out the door on their respective buses.

I have always had a great relationship with his teacher, Mrs GG. And being the responsible parent, as soon as the school office was open I called her. I'd let her know that the Middle may be in for a rough day, and maybe not. I explained that he'd deliberately taken taken his sister's meds this morning, if that was to be any indicator of how his day would go, but not to worry, that they were all the same meds he'd been taking just last month only in smaller doses, and that if he was out of control as a result of the smaller doses she could call me and I'd come get him. She was already in the habit of calling me at least four mornings out of five and four afternoons out of five to see if anything had changed for The Middle, had he slept well or poorly, had he eaten well or poorly, had he thrown up that morning or not (frequent and common side effect of the faster acting meds) had he been upset that morning? (Typically if he's upset in the morning he has a great day at school, and conversely, if he doesn't leave the house in a fit he has a bad day at school. Go figure!) and sometimes just so she can put The Middle Little on the phone with me long enough to talk him down out of his tree. Problem solved, right? Situation handled? Not by a long shot. That call took place at 7:45.

So let me give some history. In early December, The Poddest of Pods had been getting out of control much quicker, for much longer and to much further extremes. He'd been suspended three times the first two weeks for behavior, violence against both students and staff, throwing chairs, desks, etc. His daily cocktail had risen from 3 meds in the morning and 3 others at night to 5 in the morning and 7 at night. All with nasty side effects. In late December he developed some really nasty side effects from one of the meds and his doctor decided that he needed a fresh start with a clean slate. He wanted to do a chemical wash out. He couldn't continue the culprit med without the neuro side effects becoming permanent, but everything else was balanced against that one med. He would ordinarily hospitalize such a young patient for a chemical wash out, but he'd only been taking the meds a short time and felt that if I could devote 24-hour round the clock care to him, being that i am a nurse, that I would be diligent to call 9-1-1 for anything serious resulting from the chemical withdrawal. You know, stuff like sudden death, convulsions or seizures. No biggy, right? Oh yeah, and psychosis and hallucinations, too. All fun stuff. We did the med wash out at home. It was ugly watching my young son struggle with a body he couldn't control and muscle movements that were not of his own design. Google tardive diskinesia or Parkinsonian syndrome and scare yourself silly. There was lots of pampering and lots of extra little cares, but he was amazingly calm throughout and never developed the more serious effects of withdrawal. My phone was never more than at arms reach. The Girlie had been re-cued and rehearsed on how to dial 9-1-1. By the time four days were over he had full control of his body again and started back into the behaviors that wound him up on meds in the first place. Mania is his middle name, and rage his sir-name, with a little OCD for a first name. Back to the doctor we went for this newer, much less complicated, much fewer daily meds regimen.

And some even older history: The Pod was currently mid way through his second grade when all this crap came down the pike. Way back in kindergarten, at a different school with a different teacher, he'd pulled the deliberate switcheroo for the first time with his sister's meds, and the resultant great day he'd had resulted in a phone call to his doctor and an immediate switch to all of his sisters meds, in slightly higher, then even higher doses. It was an entirely different scenario than with the second (and final!) time he'd deliberately taken the wrong meds.

So back to now. At about 10:30 the vice principal, Mrs THJ, called to say that she thought in light of The Middle having taken the wrong meds, now almost 3 hours later, he should probably come home. I asked how he was doing and was told that he was actually having a great day. I explained that the meds he'd taken were the exact same meds he'd been taking just the previous month, but what he'd actually taken was a much smaller dose than he was accustomed to. That had been my concern, that he wasn't dosed enough, not that he'd taken the wrong meds. I also explained that what he'd taken was the exact some drug category that he was supposed to have taken. It was all very cordial and nice-like until she said that if I didn't come get him right now, she would call the sheriff and he would be turned over to children's services. Okay then. I got Jack bundled up to go get him and before I could get out the door, the school was calling again. It was the district nurse, Mrs GN. She was highly sarcastic and superior in her tone. She said that she wanted to see the actual medication bottles, that I had ignored all of her previous multiple requests for me to comply with this directive, and that if I didn't bring the bottles in, The Middle would not be allowed back in school. This was my third WTF moment of the morning. The Girlie was in fifth grade and had taken meds since mid kindergarten. The Pod was in second grade and had taken meds since before he started school. Never had I been asked to provide proof of what they were supposed to be taking. During every single IEP, which were this school year quite frequently more often than once a month for The Pod, his medications were reviewed. I notified the school every time his medications changed. And further more, I'd never even heard of this district nurse, much less had I ignored any multiple requests or directives from her.

By the time I got to the school I was infuriated. I could barely contain myself when Jack in his carseat and I were ushered into Mrs THJ's office. She started off pleasant enough, saying that they were only concerned for The Middle's well being (insert first posture change) and that she thought if her own daughter (fluttery jazz hands to her chest, second posture change) had taken someone else's medication, she'd want her seen by her doctor, (head bobbing up and down, third posture change) or taken immediately to the emergency room, (eyebrows raised, sitting straight up) if not actually calling 9-1-1 (hands spread expansively, ending on a shame-on-you note, side-to-side head movement). Yeah, she really said and did all of that. So, I said something to the effect of Has your daughter been under the care of the same neurologic psychiatrist for the last 5 years? Does your daughter have a history of having been on these exact same meds just a month ago? Is your daughter's mother a responsible, seasoned registered nurse who knows what to do in this situation? Is your daughter's mother well versed in the drug classifications, desired effects and side effects of these meds? Would your daughter's mother have called her doctor to make sure it was okay to send her to school and proceed as normal? Would your daughter's mother have been threatened with children's services as a result of the acts of a defiant little boy who has a well documented history of acting out? Because I can assure that all of this is true for The Middle Little. I seriously doubt that anything in your daughter's history has required that you advocate and protect her like the Middle Little's has. While I'm typing from memory, I'm pretty sure that's what I said because I can usually recount a good rant fairly accurately. OCD does come in handy sometimes! My rant was delivered in as close as I could muster to normal conversational tone. She said again that she was only concerned "for your son's well being," but her face had hardened and she pulled the massive bulk of her body up to sit higher and more erect in her chair. Instead of the semi-reclined relaxed position she had been in, probably so her lungs could still expand beneath her hugely obese body, she was now sitting forward and rigid. She'd picked a fight but hadn't really anticipated that I'd rise to the occasion. So I asked how that purpose was served by threatening to call children's services. She had no answer. And that's when the district nurse arrived, Mrs GN.

Thankfully, I still had all of their medication bottles. I lined up the two meds The Middle Little had taken, with The Girlie's name on them. Pointed out the doses. Lined up The Middle Little's bottles with the previous month's date, the same drug name in significantly higher doses, that he had been taking in January, but was no longer. Mrs THJ was now fidgeting with her hands, jangling her bracelets. Next I lined up the bottles for The Middle Little, pointed out the ones he should have taken that morning, that I'd omitted today, and pulled my handy Davis Drug Guide for Nurses out of the diaper bag to show Mrs GN that the meds he should have taken were the exact same classification as the meds he had actually swallowed. She was quickly and easily confused. Mrs THJ was breathing a little heavy now and I thought I saw her swipe sweat from her hairline. I had to go over the classifications twice more, pointing out once again that he'd been on doses significantly higher than what he had actually taken that morning. She referred back to the drug guide several more times, flipping pages back and forth, getting lost, losing her place and finally going back to the drug index, pulled out his health office record to compare what was written on the bottles to the list, thought twice that she'd triumphantly found a discrepancy, and was sadly dismayed to learn both times that she'd been reading one of The Girlie's bottles. By now Mrs THJ is sweating profusely and no longer trying to hide the swipes at her forehead and face. I pointed out repeatedly that that I'd always kept the school up to date with his meds. She said something witchy about how I'd had yet to prove it though. So I informed her that I'd never before even heard her name, much less had I ignored "multiple requests" from her, just how were these requests conveyed to me? Through my autistic, defiant, high needs child? That would be effective. Through the US Mail? Haven't gotten any mail from her or anyone else from the school for that matter. I can check with the post office for returned mail, if she thought that was necessary. Or was it with phone calls? At last check, both my home phone and cell phones were in working order. And if "multiple requests" have been ignored, why was this never addressed at his then monthly+ IEP's where every medication is reviewed? And for that matter, since she was clearly at a loss to understand the medications, even with a drug book in her hand, what real value is this information to her anyway, besides being able to recount to EMS people in the event of an emergency? I was livid and I didn't bother to try to contain it. I was observing Mrs THJ's posture become more and more agitated by the minute. She was shifting positions every minute or so, she was having trouble drawing breath, she was fiddling with pencils, shifting paper clips around on her desk. The jangle from her bangle bracelets kept a steady rhythm and created an annoying buzzing in my head. That's when Miss L, the Middle's room aid, brought The Middle Little to me. I asked her how he was doing. He looked terrified. She replied while she stroked his hair that he'd been doing really well and had no behaviors, that he'd been doing his work well, was he leaving for a doctor's visit? I took a minute to reassure My Boy that he wasn't in trouble, then I looked at both Mrs THJ and GN and suggested Maybe we should call 9-1-1 right now! After a good 45 minutes of this crap I was finished. I asked the district nurse if she was done yet, had she gotten the information she needed yet, was she able to understand the information yet, or if we needed to continue this farce any longer? I collected My Middle and My Baby and left. Miss L had lingered in the hallway. Apparently she was concerned about The Middle and wanted to know if he was alright. I gave her the brief run down. The Boys were safely out of ear-shot so I told her straight out that I had notified Mrs GG early that morning that The Middle had taken his sister's meds on purpose, and that since that time, now 3 hours later, Mrs THJ and Mrs GN had turned it into a pissing contest, pure and simple. She said it was the first she'd heard of it and it was such a shame because The Middle had been having a really good day.

I remember trying to sooth The Middle's fears on the way home. He wouldn't be convinced that he wasn't in some sort of trouble. I explained that yes, by taking his sister's meds on purpose that morning, we had both gotten into trouble and he had to go home. He wanted to know what his consequences were going to be. I said that since he was supposed to be in school, he was going to have to spend his day with books, reading quietly. Okay then. Would he still get to eat lunch? Yes. Would he still be able to have recess? No. Would he still be allowed to use the bathroom? Yes, of course. I was still upset with him for doing it, but I was more upset by these two snots who were supposedly looking out for the welfare of my child, but were instead turning a molehill into a flipping lava spewing raging volcano, all with an undeserved, unearned air of superiority. It wasn't even noon yet and I was already tired.

We got home and went on with our day. At 2:10 The Girlie arrived from her bus. At 2:30 both of the gals from the ART arrives for The Older's daily therapies. I asked The Pod's Behavioral Specialist to join me for a diaper change in the nursery so I could fill her in on his morning. He would probably be full of discussion about it all and I wanted her to reinforce why he takes the meds he does and how dangerous it can be to take someone else's meds. As I was finishing up with her and zipping Jack into his out fit, the doorbell rang. And then the real fun began.

One Mr KB from the Department of Children and Family Services was on my doorstep. He had received an emergent call from The Middle Little's school, could he come in please? Fabulous. I guess if any of this crap could be considered good, it was actually good that Mr KB had been chosen to respond to the emergent call. He'd had 22 years of working with children and adults on the spectrum before coming to the county and was quite well versed in the sheer diversity of behaviors displayed by this beast. Of course he had to interview me, review what had happened that morning, review The Middle's life thus far, and speak with both of The Little's and their respective BS's as well. While I spoke he frequently nodded, interjected agreement at several points, and agreed that rather than giving him free access to my children to interview alone, their BS's would remain with them while the parent is absent. Just fabulous. When I was allowed back in the house Mr KB said he thought he'd collected all the information necessary, that he'd go back to the office and write it all up, that he'd call me in a few days to come pick up the paper saying that he'd closed the case out. But that's not what happened.

He did call in a few days. He said that even though both The Olders had been seen by a physician for their physicals in the last six months, they had to be seen again for repeat physicals, go to the local county urgent care facility, shamefacedly say that we were referred by DCFS and there would be no charge. Drop off the paperwork to him in the next few days and we'll get this closed out. Fabulous.

So the next day I keep The Olders out of school and head off to the county urgent care facility. And since we were there without appointments, we had to go into the holding area with all of the people who were there for colds and flu. Fabulous. After waiting for two hours I approached the desk and was told that we were in the wrong area. There is a pediatric urgent care facility right next door that we were supposed to have gone to instead. Crap. Once we get over there, I explain to the lady at the desk why we are here. Thank God above she was wearing her angel wings that day. While we waited for another hour and a half with sick pediatric patients coughing, sneezing and hacking all over my healthy children, she made about 52K phone calls to various departments and finally said that for this kind of thing, we had to see the nurse manager for the county and we could only do that by appointment. She gave me her name and number. I came home and called her and explained to her voice mail who I was and why I was calling. Called Mr KB to relay the information.

By week two, the nurse manager for the county returned from vacation and by week three had gotten my information and had to call Mr KB back to find out just what kind of physicals the children needed. By week four she relayed that he had gotten back to her, and she said that he'd left a message on her voice mail that since this was still an open case so far, they should probably have forensic physicals, that she was going to call him back and keep calling him until she spoke to him personally, because she thought this was over kill and was I aware of just exactly what a forensic exam would mean for my 11 year old virginal daughter? Yeah. It meant exactly what you're thinking it meant. A gynacologic pelvic exam my my daughter who had done nothing to bring this upon herself. I hit the roof. Bless this woman. She had already heard the whole scenario had already agreed that the school had stepped quite out of bounds, in the light of The Middle's history and that I had reported the deliberate mishap myself. After I raged, railed, cussed and swore that I'd make my daughter disappear for regions unknown before turning her over to such a violation, she calmly and gently said, "That's why I'm making sure you know this, becuase I don't think Mr KB is aware of just how detailed a forenic examination gets." Turns out it's even worse than that. Any one having a forensic exam gets a thorough inspection of every body cavity. Mouth, ears, nose, throat, parts, front and back. After sixteen consecutive every two hour for two days calls to Mr KB's voice mail, the county nurse manager called me back. No, Mr KB had not been aware that a forensic exam was so extensive. No, he did not feel it was warranted. Yes, I could take them to the regular pediatric urgent care for regular pediatric physicals. So again, bright and early the next day, we are once again waiting with all of the sick kids in a hot stuffy room, and we are once again turned away becuase "The nurse who does these for the county is out today." And this news was delivered by the triage nurse who raised an interesting point. She understood why The Pod had to be seen, he was the one who'd taken the meds over a month ago. By why did The Girlie need to be seen? Mr KB's answer was because she is a minor child in the same home. She glanced at Jack asleep in his stroller and asked, "What about the baby?" Well, I'd find out soon enough. That day in fact.

Because this bs had not been 'closed out within a reasonable amount of time' Mr KB had made two more appearances in our home to 'check up.' He always gave me advance notice of when he wanted to visit and when The Girlie wanted to be 'absent from the home' for a school dance when he'd wanted to visit, he kindly rescheduled his visit so that she wouldn't miss out. I left him a message that we'd been turned away again because the nurse was out that day. He called back within the hour and dropped the next bomb shell on me. Since Jack was a minor child in the home, he was part of their now 'ongoing investigation.' Great. Just F&*$@#! Great! Here we go again. He took a complete health history from me, since I grew Jack, and was aware that a team of obstetric specialists had made the decision that Jack would be born almost a month early. Given that Jack was born prematurely, a registered nurse would visit us to go over all of Jack's information. Would tomorrow morning be convenient? Eeeesh. It's no fun getting hit with the shit-stick. Much less getting hit with it repeatedly. All of this on top of managing all the early on doctor's appointments and therapies for Jack. And life. And grocery shopping, house cleaning, bill paying, life managing. Not fun.

So the nurse arrived right on time. I recognised her. She'd been surprised to recognise my name in their case files and asked for this case specifically so she could see me again, so she could handle a newborn baby in general, mine in particular, and what the heck was going on with the school that this had gotten so out of hand? She said that when she heard the details of our 'case' she rearranged her day to make sure that we were handled as respectfully as possible. So we got down to business. She didn't comment on Jack's Ds and I didn't offer. I was afraid it would open a whole new can of worms. She held him, cooed at him, commented on how sweet newborns are, and checked out his diaper area to make sure there was no rash. You know, from neglect. She reviewed what and how much he ate and how often. I'd already gotten in the habit of asking for copies of doctor's notes at every visit, so with his weight and length dated two weeks ago, I would not have to haul Jack in for an additional visit. After that she took an extensive medical history from my pregnancy with Jack and concluded that No, he was not born prematurely due to drug abuse on my part, and that Yes, A team of doctors had all agreed that I'd already been getting the maximum care possible to continue the pregnancy, and that Jack was indeed safer out than in. Since she probably wouldn't have to see us again once if this case was soon closed, we had coffee and chatted about her life since we'd last seen each other. She already had all the intimate details of mine. She left me with a hug and a peck on the forehead for Jack.

The next issue at hand was that the nurse who should have done The Older's physicals wound up being out for an extended time. Her replacement was being found. For weeks on end the county nurse manager kept me up to date. Since the case wasn't closed out, Mr KB made frequent visits to our home and every sniffle, sneeze and cough had to be treated by physicans who were qualified to treat a cold, sooth a cough, set a broken bone, but not opine on my children's general health to the extend of providing a valid physical. The county facility nurse had to do that. Finally, after three and a half months, Mr KB called back again said that he'd gotten permission for me to take The Olders to our regular urgent care for their physicals, if I could get the paperwork in to him within the next two days, he could 'close us out this cycle,' in mid May. I packed Jack up and yanked both kids out of school and had the physicals into his office that afternoon.

Which brings us to yesterday and about Last Night. The Middle Little's IEP that had gotten cancelled until the end of May when I wrote Last Night, didn't exactly go smoothly. We'd been dragged through hell by Mrs THJ and Mrs GN. When I was given the date of the IEP I specifically requested that they not attend. I was assured by Mrs GG that they would not be there. I assured her that if they were, I would leave. Again, she assured me that she'd cleared it with the district superintendant and that it was all set.

When I arrived for the IEP there were significantly more people in the room. The Dean of Student Affairs, The school pshychologist, The District Superintendant, the principal, his regular SCD teacher, his inclusion math teacher, his one-to-one aid, some sort of special child life counselor whoes title I have forgotten, his room aid, the librarian, the lunch lady, and the groundskeeper. Okay the last three weren't there, but you get the picture. And sitting right in the middle, looking smug, was the district nurse, Mrs GN. I asked Mrs GG why she was there. She spoke up for herself and said, I remember clearly, "I am the district school nurse. I have every right to be here." Also clear was my reply, "You have no rights when it comes to my children." She said she was there because The Middle Little took daily meds, and again "It's my right to be here." I said, "You have absolutely zero knowledge about his medications or what they do for him. You have zero power to prescribe or even influence what he's given by his doctor, and unless you've significantly increased your knowledge base on his medications, I can see no real value in having you here in this meeting except to take up space." I was pissed. I felt betrayed. People were begining to rise out of their chairs. And I'll be danged if the vice principal, the hulking form of Mrs THJ, didn't choose that moment to make her entrance. My heart was pounding in my throat. I'm sure my face was red and my pulse could have been counted in my neck at 50 paces. I was tembling. I was furious, but I was also extremely frightened. Envisioning what had narrowly been avoided for my daughter still had me scared enough, sickened enough, terrified enough to cause a physical reaction. Almost every one was out of their seats now and several were saying things like, "Calm down. Every body calm down. Wait a minute here. What's going on? What's this about?" General alarm sounded in the room. I was leaning slightly over the table, still holding Jack's carseat, in the general direction of Mrs GN, still seated. I wasn't finished. I said, "Answer the question. Have you, or have you not, educated yourself about his medications any further since the last time we met, or do you remain completely ignorant about what they do and don't do for him or any of the side effects?" More Calm downs, and Now let's see here's and There's no need for thats! "Answer the question!" I was looking directly at her. She was shuffling the papers in front of her. Her eyes were down cast. "I thought not!" She had nothing. People were begining to retake their seats, but the principal and the dean of something-or-other remained standing. I pointed to both Mrs GN and Mrs THJ and said that I'd been told they would not be present, and that after all the crap they'd victimized my children with, either they left or I would. Defense rose from both of them, "We didn't do anything to your children! We were only looking out for (Insert The Middle's name here)!" I said again, either GN could recite even basic knowledge of The Pods meds, or she had to leave, and that Mrs THJ had to leave regardless, or I would. What came next was many people speaking at once, trying to explain the two asshats' roles in the meeting. "Okay, then." I took Jack and exited through the door I'd entered. Once out in the hallway I was shaking so badly I thought I'd fall down. Hands touched my elbows. My vision was blurry. People were talking. My head was buzzing. I was turned around, nudged forward. Someone took Jack's carrier out of my hand and led me to a small room with a hand to my back. I was sat in a chair. Stood back up. Looked at Jack asleep in his carrier. Couldn't sit. Had to move. Fight or flight. Leaned over the table. Caught my breath. Visions of The Girlies terrified face stabbing at my brain. Trying to explain Why you have to let the doctor do this to you to The Pod. Tried to speak. Couldn't. Cried instead.

When I had myself together I realised that the Principal and the Dean of Student Services had followed me out and had ushered me and Jack into this room. I mumbled raggedly that those two women had terrorized my family and that I would not sit in that room with them as if it was all okay for them to hurt my children. They exchanged glances. Stated that they were only aware that a referral to children's services had been made. Someone brought me water and kleenex. They sat with me and I explained in brief detail all the crap we'd had to do since that day, including the demand that my ten year old daughter be subjected to a pelvic exam. That both children, having autism and an unrealistic grasp of situations, feared daily that today would be the day that "That guy from children's services" took them and their baby brother away. The hysteria over every little crisis, the nervousness and tension in general was exhausting to both them and me. The torment they experienced every time they had bad dreams. I never did clarify that The Girlie hadn't had to submit to a forensic exam. They asked if I'd take a few more minutes to calm myself before I drove. I said yes and drank more water. They returned a few minutes later saying that both "ladies" had been excused from the IEP, did I think that I could join them. I did. It went well. In spite of the meds, the chemical wash out, the hourly, sometimes minute-to-minute quirkiness of My Middle Little, he was progressing academically on all fronts. Reading at a 4.5 grade level. Was finally at grade level in all other subjects, having started the year at or below a first grade level.

So I have to assume that this is what Mrs GN was talking about yesterday when she said she'd had no idea that DCFS would go to such extremes. I didn't clarify the differences in the forensic exam they didn't endure, and the regular old run of the mill physical they had been given then and I didn't clarify it for her yesterday. Let her feel the shame of at least 1/100th of the terror I felt for my children. At some point yesterday, The Girlie had sidled up to me to lean her head on my shoulder, her quiet signal to me that she wanted to leave. Mrs GN said "I can't explain it..." I said "Explain it to her" with my eyes toward My Girl. She said, "I can't." I said, "Do you think it was any easier for me to explain what was going to happen to her?" The Girlie was oblivious to what we were talking about and I viciously allowed Mrs GN to remain oblivious that The Girlie had not suffered this insult in the end. Call me small. Call me a heartless bitch. What I can tell you for sure though, I am a mother who's eyes still sting and who's heart still quakes for what might have happened to my children. All for the ignorance and pomposity of an overweight, out of breath and sweaty vice principal and an overly puffed up ignornant district nurse who has the information at her finger tips but is too full of hubris to seek it out. They are bullies. Nothing more.

Funny Faces

I'm not sure what this face is about. I catch him laying on his back with a toy in front of his face, babbling and making this face. He sits in his swing babbling and making this face. Now he's up on all fours, rocking double time, babbling and making "The Face!" I'm not sure, and he's not tellin', but I think he's having fun with the view a squinty-eyed perspective gives. What ever the reason, he's having fun with it!

I know I suck

There are pictures coming. I promise. I've just picked up the Girlie from school. She made it until 8:40 when her poor face was hurting too badly and she needed to come home. I'm waiting for The Middle Little's school to call to come get him because he is on new meds and they may kick his hiney while he gets used to them. So I'll get to the pictures when I can. Promise!

While I was at the school to pick up said Girlie, I ran into to the district nurse. We exchanged the common cilivities How are you fine thank you how are you. And then she said that she wondered if she might speak with me sometime. I was immediately on my guard. If it was about the basketball to the face she wouldn't have sounded so vague. If it was about The Poddest of Pods, she would have called a formal meeting already. I told her I'd be sending a detailed list on Monday of The Pod's new meds. Oh okay, but it's not that. So I asked her which child it was about. Neither she said. I feel really bad about what happened last year and wanted to see if we could talk about it. I said no, she'd victimized our family already, and she didn't get another chance. She kept blathering about how she didn't know DCFS would go to such extremes, how sorry she was, how she hadn't understood my extreme anger until she'd been told in detail what had happened, blah, blah, blah. I didn't even have the stomach to blog about some of the extreme detail. Still don't. Still makes me physically ill at what almost happened to My Girlie. Another parent was passing by as I said, "Well, like I said, you don't get another opportunity to victimize our family. The bridge has been burned and I don't see how talking about it will do anything except alleviate your feelings." The woman looked at me and then the district nurse. Call me shallow, but it felt good to stand my ground and not let her draw me into her emotional needs. Being mean to this woman who'd harmed my children, with holding kindness from her, not allowing her to cleanse herself to me...in my imagination it would have been an all out fist flinging headliner event with all the fanfare of five rounds in the ring at Madison Square Garden. It wasn't, It was a quiet, rather hushed discussion, whispered in the hallway between the nurses office and the office proper.

Also met Mrs W this morning. She was open to the fact that The Girlie staunchly denied what Mrs S supposedly said. Even suggested herself that denial is entirely different than failing to remember. I found myself not disliking her. We'll see how it all shakes out. The Girlie has been back-scratched, hair stroked and cartoon observing. Just now she's enjoying a cup of hot chocolate that I made for her with whipped cream and rainbow sprinkles. Jack's newest nick-name, courtesy of The Dear Daddy, is Wabiest of Wabies. He's such a big giant man to be so silly. Life is good.

Thursday, December 2, 2010

The Basketball Debacle

The Girlie spent the night in our bed, once she was sufficiently drugged with Frosties from Wendy's, ibuprofen and narcotic pain medication, and lots and lots of snuggles and pampering while we all watched a family movie together. I called Mrs V back at about noon today to tell her that yes, The Girlie was to stay home today, and that indeed, her nose was in fact, fractured.
Her attitude was quite more accommodating today, but the things she had to say certainly were not. No, she had not yet had the chance to mention this to Mrs S to find out what she had to say. She did say that there would be in place from now on, for any student, not just The Girlie, a policy that any injury will result in a trip to the health office, she just had to run it by the principal. I asked what the principal had had to say about the situation. She said she hadn't had time to mention any of this to him yet. She'd said several times during yesterday's conversation that she would mention my phone call to Mrs S to see what she had to say. So I repeated to her again today what I'd said yesterday. "I don't want this issue mentioned, like a casual conversation. I want it discussed and I want feedback on what is decided." She was a little put off. She asked if it wasn't adequate that she was telling me over the phone about what had happened so far and about the new policy to be implemented? She seemed genuinely taken aback that I wasn't satisfied. She said that any further discussion would be mute, that since The Girlie's nose was indeed broken, she didn't see the need to continue to argue the facts. So I said, "No, it isn't adequate. You haven't spoken to Mrs S yet and the principal hasn't even been notified of my daughter's injury. The facts are inarguable. You have a policy you want to put in place but have yet to implement. I still have not heard what Mrs S has to say about this situation. What has happened so far, are only these two discussions between you and I, no one else. I want reassurance from Mrs S herself that this will not happen again. So no, your verbal assurance over the phone that I can trust my daughter's safety to your care and custody is entirely inadequate." She assured me that I would receive my feedback and that Mrs S would call me personally by day's end. You can guess that that didn't happen!

We were on the way to Wally world to buy space heaters. That's another ugly story that has wrench written all over it, for another time, but suffice to say that we can't get the danged heater to go on and we don't have the money to replace the panel just now. So when my cell rings, I'm expecting Mrs S, as we'd discussed. Instead, it was Mrs W, the principal, who'd finally in her words, 'been brought up to speed' on this situation. She said she had spoken with Mrs V at length and also with Mrs S personally and was satisfied that she had taken the correct action, that The Girlie declined several offers from Mrs S to be sent to the health office and further declined the offer to have me called, saying she would be fine to go home on the bus. She said that Mrs S had not called me herself as promised because Mrs V was unaware that Mrs W had asked Mrs S to do some tutoring after school, today. Sound like a bunch of crap designed to avoid self incrimination during litigation to you? Yeah, me too. I replied that The Girlie had said none of this to me, that I would ask her specifically about it, that she'd already said the teacher did not try to send her to the office yesterday, but that sometimes with autism, there is not total recall of a conversation until reminders and prompting are given. We hung up agreeing that I would ask The Girlie again, because sometimes she will say, "Oh yeah. That did happen. I forgot. Sorry"

By the time we hung up, we were already in Walmart. And when I asked The Girlie about yesterday, she most certainly did not say, "Oh yeah. That did happen. I forgot. Sorry." The Girlie sees me folding my phone shut and asks, "Was that my teacher?" No, I say, it was Mrs W, the principal. She says that Mrs S asked you repeatedly if you wanted to go to the health office and you said no. And she blew! The Girlie is very mild mannered. Unless she's yelling at The Middle, she seldom raises her voice. She didn't raise her voice now either, but she was adamant. "Mom, that's not true! That conversation never took place. She never asked me if I wanted to go to the health office," complete with eyebrow furrowing that earned her a flinch from the pain and was promptly traded for head tilting. The emphasis on some words is also rare for her, because her medications flatten out her affect to the point that setting her head on fire would not yield any alarm on her part. So I said, Mrs W also says that Mrs S asked you if you didn't want me called to pick you up instead of going home on the bus and that you said you'd be fine on the bus. And that really set her off. She may have even raised her voice by .0009 decibels. She was ticked. Her face got red and she was shaking her head in denial. "Oh no! No! No! No!" quite calmly in spite of the vehemence, "Mom. That never happened. She never asked me if I was okay to take the bus. She's a liar. I don't care if she does get into trouble now because she. is. a. liar." I assured My Girl that I believed her and that I would get to the bottom of it. She doesn't lie. Ever. She can't. I don't think she knows how, despite my best efforts to teach her. But that's a story for a different time. My assurances were met with "She's a liar, Mom. I hope she does get into trouble now!" So I had to say that we didn't really know who was lying, Mrs W or Mrs S, because we hadn't heard what was said for ourselves and the information was second handed, but again, I would get to the bottom of it. I haven't thought about it a great deal since then, because The Middle Little chose that particular moment to have a massive in store melt down about the injustices being suffered upon my only sister. His words, not mine. From an eight year old. But now that I'm typing, a few things come to mind. If the teacher supposedly felt strongly enough about the situation to ask "repeatedly" if a trip to the health office was needed, wouldn't a reasonably prudent person send the child anyway? That's the standard I would be held to in a court of law. Reasonably prudent. And as for the offer of calling her mom to pick her up instead of riding the bus, let me tell you, The Girlie hates riding the bus and would have jumped at the opportunity to avoid it. A hang nail would be a perfectly valid excuse for me to save her from riding the bus. Or a spelling error. The fact that it's Wednesday. They served fish sticks in the cafeteria...you get it, anything to avoid riding the bus. Anything. And the ice pack on her face? Wasn't that reason enough to send her? The final note is that My Girlie never lies and believes that it is a reprehensible thing to accuse someone of if they haven't lied. And yet she was perfectly clear. She. Is. A. Liar! Not remembering a bit of conversation is entirely different than denial of it having taken place. So I guess I will be having another conversation with her principal tomorrow to insist upon a meeting. Very soon. With The Girlie present. Both she and Mrs V had said that they hoped to be able to meet me soon. It just goes to show you, you'd better be careful what you wish for, because you just might get me instead!

A Birthday Present

Miss Anna, Jack's EI gal, brought him some crinkly, tasty tissue paper for his birthday!

Actually, she brought him two books to enjoy! Thank you, Miss Ann-na-na!

Wednesday, December 1, 2010

"I'll Take A Basketball to the Face for $1,000.00 Alex"

I'd been trying to write a pity party post to myself in Am I That Woman? when my plans to self indulge in some poor-me's got derailed.

The Girlie walked into the house, fresh off the bus from school, holding an ice pack to her face. When she took the ice pack down saying, "Mom, I got hit in the face with a basketball!" My first question was, When did this happen? While I noted the swollen and reddened bump to the bridge of her nose, on top of the natural one already there from inheriting her Dad's nose, I tipped her face up to see if the nasal deviation I was seeing was truly there. And it was. Her nares (the thin petals of the nostrils) were no longer meeting her cheeks at the same height on her face! She said it had happened during PE, almost 2 hours ago. I stand away so that the kids' ART gals can look at her. Both sets of eyes widen.

So, clearly we are heading the the ER instead of having The Older's therapies and Jack's vision session. While I am gathering diaper bag stuff and filling bottles, I call the school to find out exactly why my daughter was hit in the face with a basketball with enough force to cause facial misconfiguration and I was never notified. The gal answering the phone says that the health office gal has gone home for the day, but that my daughter never came up to the health office today. Would I like to leave a message? No, I want to speak with someone. Now. The principal, the vice principal, her teacher. Someone!

While I'm waiting on hold I find out from The Girlie how it happened playing basketball, from which direction from up here (gesturing above her head), was it thrown at you or did it bounce from something I don't know. I think it bounced from the board, did you get a bloody nose no. (I later discover the blood inside her shirt at the emergency room. Oh. Yes. I did get blood right after. Is my teacher going to get into trouble?) What happened right after you got hit with the basketball I went to Mrs S (her teacher) and what did she do? She wiggled it and said I was okay. Did you go to the nurses office? No. I asked if I could go get some ice. What did she say? She said I was fine. When did you get the ice pack? I got it from my lunch bag after PE. Were you crying? A little. But all the other kids came to me, so I tried not to.

So finally, there's a voice on the line asking with whom she is speaking. I say my name, and that I am the Mom of The Girlie. She asks what sort of problem there is, with a very You're bothering me and taking me away from my very important life, haughty sort of tone. So, I ask her, "With whom am I speaking?" (Hey, I can sound smart, too!) She introduces herself as Mrs V, The Dean of Student Education. Well then. I say that my daughter has just come off the bus with her face swollen and misconfigured after being hit in the face with a basketball, that she is in a great deal of pain, that we are leaving for the emergency room at our local hospital, and that I want to know why I wasn't notified immediately so that this injury could have been treated immediately, not two hours after the fact. She asks the question that set the whole tone of what came after. Did she ask to go to the health office? I repeat what The Girlie has said to me "She asked for ice and Mrs S wiggled her nose and told her she was fine. She took it upon herself to go and get her own ice pack from her lunch bag and held it to her face." Well I don't know that Mrs S would have sent her to the office if she didn't ask to go, so that's why you weren't notified. So now I'm pissed. Not so much at her words, but the inflection on certain words and the voice intonation that were telling me clearly, Duh, if your kid is too stupid to go to the office, I can't help you! So I take a breath to pause and say something to the effect of, "My daughter has Autistic Spectrum Disorder, she was in pain, having just been hit in the face with a basketball, and she went to her teacher to tell her what happened and to ask for ice. Why is it up to her to ask to go to the health office when she clearly asked for treatment? Why didn't Mrs S, who currently had the care and custody of my child in her charge at the time, ask her if she needed to go, or just take the initiative and send her? What kind of training does Mrs S have that she could reliably triage my daughter's injury and dismiss it? Because I am standing here looking at a child with a swollen and misconfigured face holding an ice pack to herself." Mrs V assured me that These types of injuries very often do not swell until later, again in her 'You're bothering me voice,' and that is why Mrs S didn't send her to the office. "And have you spoken to Mrs S about this to know that is why, or am I assuming correctly that you haven't and that you're just now hearing about this from me?" Well, no, I haven't spoken to her to hear her side of it..."Well I can assure you that the histamine reaction in "these types of injuries" or any facial injury for that matter, is in fact, usually immediate and the swelling is rapid and easily visible." Oh and do you have any sort of medical training to know this information? Big mistake, sister. It wasn't the information seeking that pissed me off, it was the attitude. So I gave it to her. "Yes, in fact I do. I've been a registered nurse for seventeen years, all of it in ICU, and the majority of it as a trauma nurse. I do in fact, have the medical training to know this information, which the last I knew of, was not included in a teaching credential. So, we're all packed up and ready to walk out the door to the hospital. You find out what you can and I expect some feedback by tomorrow to know why I wasn't immediately notified. That was my purpose in calling the school while I got us ready to walk out the door."

Her closing salutation was much kinder and significantly less snotty and defensive. I don't usually enjoy pulling out my trump cards (I have so few of them) but I can and will when treated disrespectfully or as less than, and I will slap down my aces with aplomb when it comes to my children. It just pissed me off that instead of treating me as a parent calling to alert her to a problem, she instead got immediately haughty and then tried to make it my child's fault for every thing that came after. I have to admit, I do get off on being able to Man Up, Belly Up to the Bar, or Put My Big Girl Panties On and come away the victor when the victim gets further victimized. I think I've said it before. Don't piss me off and I won't hurt you. Don't hurt my kids and I may let you live.

The ER visit was uneventful. We were there for less than three hours and at the pharmacy for less than one. We got drive thru Wendy's Frosties on the way home. We were home in time for Hell's Kitchen. (Trev sucks and needs to go home!) The findings were that The Girlie has a fractured nose, but that the swelling going down will likely result in significant reduction of the deviation, which at this time was a nice, sloping, gently curving backward C. On my child's face! She may have a very minor concussion. The fracture is small and will likely not need any further treatment or manipulation. There was no blood collection or fluid accumulation to any vital structures. She has some peri-orbital tenderness and may have a bit of black eyes tomorrow. Ibuprofen every 6 hours, Tylenol with codeine every 4 hours, Zofran for nausea, watch for neuro changes, sleep upright if needed, stay home from school tomorrow. Return for worsening symptoms. Dang. Poor Girlie.

Am I 'That Mom?'

Well, yes, I guess I am. I had an out of body experience today. The proverbial floating above, looking at myself, feeling void, feeling intimate and familiar with that woman but also strangely detached at the same time. And then my spirit was pile driven back into my body with a force only equalled by the pain of being. At least, that's how it seemed. I'm sure it wasn't that dramatic, and it took me longer to type that than to have the experience.

I really am fine with Jack having Down syndrome. Really, I am. He wouldn't be Jack without the extra bits. Once again, it's me having the problem, not Jack. All that bravado a few days ago...yeah, all pure crap. At least that's how it was this morning.

It's easy to feel like I'm coping when we're totally sheltered by all of Jack's therapies coming to us. It's a different story to join a group. I've read plenty about Mom's who have been gobsmacked by their feelings while attending their Buddy Walks, and I've read about quite a few Moms who were already feeling stunned just at the prospect of going to the Buddy Walk. So I thought I was prepared for ours, and when it came I was fine. I even spoke to lots of young children and their parents. I was fine. Maybe it was because The Dear Daddy took complete possession of Jack to go watch the band while I chased after our seemingly typical Olders to do all of the activities that Jack is too young for. Maybe I was just busy and distracted. Maybe I really was just okay with all of it.

So this morning I was pretty excited as The Jack Snack and I headed out the door to a Mommy and Baby class that Beth, our OT, thought might be beneficial for both of us. The class has three little girls, the youngest is Miss S and she is 11 months old. The oldest is Miss N and she is almost two, and the middle of the girls is a little dolly we've already met several times, Miss Em and she is 19 months old. Two of the girls have Down syndrome, and the oldest, sweet Miss N, has some other chromosomal issue I don't know the name of. It turns out that Miss S's mom had to call out that day, so it was to be Jack and the two girls.

Miss N wasn't having a good day and cried quite a bit, but she'd started off willing enough to play and do some of the activities in this giant room full of fun stuff to do. Jack kinda took it all in, not at all bothered by the noise, having a shared a home so far with The Middle. When Miss Em arrived we were happy to see a familiar face. We were all in a circle playing and learning how to share. Miss Em and Jack have met before, but the first time Jack was sleepy and had little to say. The second time we were at the mall having yogurt and Jack pretty much babbled to himself and aside from staring raptly at Miss Em, had little to say directly to her. Today was a different story. Today he could not take his eyes away from her. He sat and stared at her. He laid on his belly and stared at her. He babbled to her. Miss Em's Mom gave her the sign for boy. A few minutes later she gave her the sign for friend. They sat together. They stood together. Or I should say, Miss Em stood while Jack was held in a stand. And Miss Em leaned over and gave Jack the sweetest hug ever! While we were working on our sharing skills with Miss Em, Miss N was working on voicing her discontent, and Mr Jack was working on rapt devotion to Miss Em, it suddenly happened. That whole out of body thing.

It was brief, but dang it kicked my butt! Suddenly there I was. I was that Mom. You know, the one with the kid with Down syndrome. I was part of that group. And it pretty much sucked for a minute. There were no facial grimacing or tears, just a brief moment where I was sucked backward for a second out of the time continuum and then shoved abruptly back forward into the here and now. Jack has always been that kid. Jack has always been part of that group. You know, the kid with Down syndrome. Poor Jack. Yeah, not so much. Jack doesn't give a rip that he has Ds, and truth be told, neither do I. Because Jack is Jack and he rocks those genes. So it's time for me to also be part of that group. You know, the Mommies. Because until now, I've really just been The Mommy. Now I can be part of the group. Mommies. Plural. Not single. Not isolated. Not alone. And crap, here come the damn tears again.

So this whole OOB thing wasn't some final admission that my darling baby boy has Ds. It wasn't some final acceptance of the Ds. I've been there, done that already, and I'm finished with it. I guess it was an eye opener for how this Ds thing may help define me. It just added another dimension to who I am. The Beloved and I have already been that couple faced with an unexpected later in life pregnancy. We've already been that couple struggling to cope with what we truly believed was devastating news when Jacks dx came in. I've already been that woman out shopping looking longingly at other women's bellies where typical babies grew. I've been that woman who had to endure the pity looks from doctors, nurses, lab techs. I've been that woman who told friends, neighbors and family the news. I've been that woman who was scared skinny. But no more. Now I am part of The Group. One of The Mommies. And I belong. I belong!

So it turns out not to be a pity party post after all. Turns out it was pretty danged cathartic to write it all out! I talk to myself quite often. It's usually a one way conversation, with a stubborn pig head. Sometimes I talk in circles. Sometimes I get mad at myself. Sometimes I yell at myself. Sometimes I wind up more confused than I started. Sometimes I get answers. Sometimes...I am brilliant.

Miss N's Mommy decided to take her home mid way through the play group, so it was just Beth, Jack, Em, Em's Mommy and I. The kids sat in the suspension swing (Man I wish I could get in there!) and then we all sat on the bench swing to sing and sign. Jack and I learned a new song called Slippery Fish. Well, I learned it...Jack pretty much just ogled Miss Em and fell more deeply in love. It turned out to be a really good thing to do and I can hardly wait for next week! Yeah, Mommies!