An Intricate Balance of Logic and Emotion

I remember the day of my ultrasound...as we drove I thought of the baby inside of me - most women want a baby girl...I really didn't care, I just wanted it healthy. I have 2 boys, was raised with 3 brothers, I know boys - a girl seemed rather scary to me, especially since I remember what a spitfire I was and history tends to repeat itself. Plus, I hated pink and already had a large collection of Thomas the Trains, Hot Wheels and Godzillas, so a having a boy would be logical.......

So when the ultrasound showed a picture resembling the drunk girl sitting on the Xerox machine at the office party, there was no doubt in anyone's minds....we were having a girl.

It's amazing how quickly the mind shifts...my thoughts turned to shades of lilac, petal pink and sunshine yellow. Flowers, bows, pigtails, dolls, ruffles, sparkles.....these things eeked their way into my Monster Truck world and I accepted them with open arms and a happy heart. And things were girlie and fun for almost 2 whole years....and then it started - Regression.

First to go was the pigtails....Emily could no longer tolerate accessories in her hair, nor could she tolerate the shampooing and brushing - the sensory overload was far too much. Mournfully I packed up all the bows, bands, and barrettes - shoved them to the back of the closet where they didn't stare and taunt me with their girly-ness. Eventually, I also packed up my dream of Emily having beautiful long blond hair like her mom used to have and cut it in a short bob for easier management.

Then, the clothes...nothing with frills, glitter, rhinestones, embroidery, any embellishment of any kind for that matter. No long sleeves, tank tops or sweatshirts. No leggings, tights or cute little jeans. Emily dressed like most lazy teenage boys - cozy jammy pants and oversized shirts.

Going through the girls clothing department was a tortuous nightmare - 90% of the clothes there she would refuse to put on. That goes for shoes as well....All the cutesy sandals, glittery slides and kicky boots...shot down in screaming flames.

And finally, the toys....Emily had no interest in baby dolls, kitchen sets or Barbies. No dress up, no pretend play, no nothing girly at all, despite all my empty hopes.

That was the beginning of Autism, and I have fought uphill every day of my life to change some of that. Emily's hair is still short, still accessory-free, but shampooing and brushing are no longer huge screaming matches. Clothing is still a sticky-wicket, but she likes what she likes and I do not fight that battle anymore. Somedays she has gone to school in a soccer jersey with a big full pink tutu and crocs and I don't bat an eye. Toys....ahhh toys. Toys revolve depending on what she is watching at the time (Little Einsteins, Elmo, Teletubbies), but one constant the past few months has been a Raggedy Ann doll ("Dolly") that she takes to school every day and sleeps with. This makes my heart explode with joy in so many ways - She likes a doll (YAY!), she plays with it appropriately (YAY!), and she can say 'Doll' (YAY!) Finally, and the most precious, is that Dolly belonged to my Nanny, and it sat on her bed everyday of her life after my Grandfather passed away, and when she died a year ago, my mother gave it to me and now Nanny's great-granddaughter holds it, cherishes it, and I know she is smiling in heaven (SUPER YAY! ...with a little sob).

....Emily has come a long way in 3 years, and in those 3 years I have struggled and fought with my feelings of Autism and her - the balance of still mourning things that are lost combined with the celebrations and joys of who she is and what she has accomplished. It's a delicate balance that will never go away - she will grow, and age, and there will be things she cannot do, and that will hurt....but there will be many, many things she will be able to do, some better than others, and for that, I celebrate her life and the impact she will have on the world.

.....But, the mourning never really goes away.....




My brother had a baby girl a few days before Christmas. And I was not happy. I wanted Emily to be the only granddaughter, the only niece, the only girl cousin. I wanted her to be unique, special, but in a completely normal way. I realize it sounds shallow and petty, but keep reading....

Emily's cousin J was born a month after her and in the beginning everything was great and so much fun to have them sit together and look cute and compare fun stories - and then she regressed....no longer was it fun to hear stories about J.

When J started talking and eventually spouting funny little quips, I laughed with everyone - until I got home and listened to Emily shriek and grunt and scream...and I wept.

When J started potty training, I listened to all the stories of bribery and star charts - and then went home to scrub feces out of my carpet and off my walls for the 3 millionth time...and I wept.

When J sent his artwork to my parents and they put it on the fridge, I marveled at it with them - and then went home to my daughter who couldn't hold a pencil, much less draw a circle...and I wept.

All of J's accomplishments and milestones....tortuous reminders of just how much Emily wasn't. It was so in my face, so RIGHT THERE, and I mourned for that child that couldn't keep up with her cousin. It stung like frigid water to the face, it burned slow and deep like an ember, and for close to 2 years, the comparison in my mind was almost unbearable.

I fought, prayed and struggled and worked through all those feelings and it was hard. I now celebrate J for everything that he is (and he IS awesome), and I don't even think twice about what Emily is not when J is.... Everyone at some point, to some extent, compares their kids to others, it's human nature, and I am no different. But in this case, I HAVE to be different, I cannot compare Emily to anyone but herself and the bar I set for her, and that is how it has to be - for my sanity and her success.

But when M was born, all those feelings came back...and not in a tap, tap, tap "Hellooooo, Im baaa-ack!" kind of way, it was more of a SLAM! SMASH! "I'm fucking BACK."

Except this time it had a new twist on it, and to someone who has not been in Special Needs Shoes, my reaction might seem shallow, petty, and selfish, but to me - Very. Painfully. Real.

Again, I did not want another girl in the family, I wanted Emily to be the only one. I didn't want anyone else to compare to her. My mother was so full of joy, but all I saw in my twistyness was her chance to finally do all the girly things with M that she couldn't do with Emily when she was little. All the Baby Dolls she gave Emily that were cast aside, M would accept with open happy arms. Tea sets, Barbies, play makeup, pretending....all things Grama gets to do with M that she never got to do with Emily. I saw milestone pictures of M in my head - in adorable little outfits that Emily would never wear, with adorable little pigtails with adorable little bows that I never got to do. I can hear M's cute little squeaky voice that will fill ears with happiness that with Emily I waited so frickin' long to hear...and the thought of hearing something along the lines of, "Now, which one of your granddaughters is the one with Autism?" crushed me.

In my head, she ceased to be "Emily" and became, "the one with Autism".

My family is loving and supportive, and I am truly, truly blessed for the wonderful advocates they are for Emily - my logical side tells me that everything in the paragraph above is all bunk, and I know that. But the funny thing about feelings is that they just HAPPEN, right or wrong, they are there. Emotions don't really care about logic, fairness, or right, they just show up and demand to be noticed and then you have some choices to make - do you crumple them up and bury them deep down inside? Or perhaps tear them up into tiny pieces and deal with a piece at a time? Or meet them face on and bear the cross they have in store for you?

I will always, to some extent, mourn that part of the little girl that I never got. Depending on my mood, walking down the girl aisle of the toy section can be anywhere from a fleeting sting on my heart to a "stop-the-cart-so-I-can-cry" punch to the face. When I want to buy something for Emily, my husband has to ask me, "Are you getting it because YOU want her to play with it, or does SHE really want to play with it?" ...the American Girl catalog that comes in the mail - that gets thrown away. The clothing section is still a painful place to be, and I imagine with Emily's sensory issues, will always be, but I also understand that is small potatoes compared to other obstacles we have dealt with, or will deal with in the future....that doesn't make the hurt, the mourning, the emotions any less - remember, emotions do not care about logic and reason.

So I dance the dance - the balance of logic and emotion. I will bear my cross and work through my emotions over and over and over until they are very small and the logic takes over. And when the time comes to hold my niece in my arms, I want to be able to celebrate her for all that she is while not comparing all that Emily wasn't. I want to be able someday to put those emotions in a box in my head and look up to the heavens and tell my Nanny,

"You were right....This too shall pass"

The Price Of Safety Today...One Shattered Forearm.

I wish I could say that Thursday started out like any other day, but it didn't. Emily awoke at 3:30am fitful and stimmy. She crawled into bed with me and I tried to calm her down with some of my usual tactics - tight hugs, deep pressure rubs, wrapping her snug in blankets - all ineffective. She tossed and turned and whimpered, occasionally trying to calm herself by scripting a few phrases from her cartoons. By 5:30 I gave up and clicked on The Disney Channel for her and began my day. The morning ran its course, I got the boys off to school and Em and I were alone. She was no worse for wear, having her usual level of energy (high) where I shuffled around with my eyelids at half-mast, making a pot of really strong coffee and mentally rearranging my day so I could find time to squeeze in a nap.
Around 10:00 my dad stopped by to fix the front door that Emily had broke when she was told she could not go outside. As he fixed the door I chatted about my morning while Emily flitted around him jabbering, as if she was telling him about her morning too. The task was done, Gramp got on his coat and Emily, on cue, began to become upset. She very quickly recovers, like a light bulb went off above her head - "Car? Emme go? Shooes? Socks? C'mon Gramp, lessh go!" It's 10:30, and Em has to get on the school bus in an hour. I start to protest, but my Dad is already getting her coat and putting on her shoes. "I have to go to Great Harvest (bread bakery) today anyway, we'll just go do that real quick and be right back." All I can think about is a 20 min. cat nap, so I let her go and watch her bounce out the door, her face glowing and beaming because she is going in the car with Gramp. The door shuts, I get her stuff ready for school, grab a blanket and sink into the couch. What seems like only moments later my phone rings and it is my Dad.

"I need your help. Emily ran away from me and I think I broke my arm." His voice is frightfully calm. My heart skips a beat and I feel the blood leave my face. A thousand questions race through my mind - Did you catch her? Are you OK? Do I need to call the police? An ambulance? Where the hell are you? ...I pick the last one, scramble to find a pen and write the location on my hand, not taking time to find paper. Phone, purse, keys and out the door I sprint in my monkey jammies. It occurs to me as I speed erratically through traffic that I was paying bills this morning, so my wallet is still sitting on the kitchen table. I don't care, I'm not stopping for anyone, even police. Racing, racing down a residential street, scanning for a glimpse of Emily's lime green windbreaker, Dad's yellow sweatshirt...not seeing them, not seeing them... YELLOW! Screeching to a halt, throwing the car in park, I jump out and approach my Dad, with one arm bloodied and hanging limp at his side. A bone juts out just above his wrist. "EM!?!" is all I can say, and a woman comes out from her yard, "She's in here! She's safe." And then, everything catches up with me, I feel my knees go weak and I start to sob and I collapse in this woman's arms.

Emily is cheerfully playing on the swing set of this woman's house with the other children that were there - completely unaware and unfazed by what has just transpired in the past 10-15 minutes. I scoop her up and attempt to put her in the car, which leads to an immediate and intense meltdown - kicking, screaming and failing. This time, I am oblivious to her reaction as I shut the door and turn my attention to my father. "Get in the car Dad, I'll take you to the ER" "No, just take me to my car, I'll drive myself to the ER so you can get Em to school" SERIOUSLY? Did that just come out of your mouth? "Um, no....I'm not letting you drive - get in the car." "OK, but only to my car, you have to get her home to calm her down." "Dad, you are NOT driving with a bone sticking through your skin!" (I think to myself, Are we really fighting about this?) His reply was, "What? I still have one working arm!" "DAD! Get. In. The. Car."

Driving to the hospital, I have a million questions that need answers, but only one out of the two people here are out of danger, so I wait. I call my brother to meet me at the ER - there is no way I can help him in with a still melting Autistic child in my backseat, throwing booster seats and toys, kicking seats and trying to pull my hair. Scott meets me, gets Dad out, and I drive home. We get inside and Emily sheds her clothes, her trademark ending to a meltdown, and plops down on the sofa to watch Dora. I call Mom to tell her what just went down.

To say I "lost my shit" is an understatement. I hyperventilate, I scream, I sob....I had so many emotions and thoughts running through my body at a thousand miles an hour, like an electric current - it was extremely hard to decipher them and pick and choose which one to address first. I am mad...but at what? I am remorseful...all I wanted was 20 min to close my eyes. I am responsible...or at least I feel like it. I am thankful...she did not run the other way into a huge busy street, and she is safe.

The rest of the day is one big, sucking, emotional drain. I go back to thank that wonderful woman that helped with Emily, crying the whole time. Then back to the ER, where my Dad lay to be looked over by surgeons. Sobbing again. He has literally shattered his forearm, breaking it in 7 places and splitting the bone. It will take 4 hours of surgery, 3 metal plates and multiple screws to put his arm back together. Through the morphine drip, he tries to tell me what happened....

After Great Harvest, he tried to get Emily back in the car and she bolted. She ran the entire length of the strip mall and then around the corner towards houses. (This is the part where I thank God and everything that is Holy that she did not run the opposite way into heavy traffic, where surely the outcome would have been grave.) Dad ran after her, and tripped in a bump on the sidewalk towards the end of the mall, and that's when he broke his arm. But that wonderful man, that beautiful 64 year old man, with a fake knee, and now a bone sticking through his skin, got up, and chased my daughter another 2+ blocks until he caught her. Amazing.

Exhausted in every way imaginable, I go home and collapse on the couch. Looking at the clock, I have 40 minutes till Emily gets off the bus...but what I wanted more than anything I cannot do...sleep. Every time I close my eyes, the "Emily Escapes" movie plays in my brain. I see my Dad go down, the bone piercing his skin, the look on his face as he fell. I see him getting up, most likely in tremendous pain, and continue to run, and realize he has to run FAST. I feel his pain, his panic, his level of adrenaline at that moment. But what is eating at my gut, what makes my heart hurt so badly, is that he had to feel that feeling...that sick, panicky, vomitous horrible feeling that comes with a child escaping you - especially one with Autism. That feeling that grabs at your throat and turns your blood to ice when you realize no amount of yelling their name, or screaming for them to stop is going to make them return to you. ...all you can do is run like hell and pray.

The Dentist Gets Punched and I Am Awesome!

I marvel at how just a few kind words from a stranger can burn into your memory and leave a print on your heart forever.  I wonder if people know what a profound effect they have when they reach out to express a kind thought to another. 

Today Emily had a dentist appointment. Now, I know NOBODY likes the dentist, but kids with Autism HATE the dentist. H. A. T. E. the dentist.  For some, it's the lights, the sounds of drills, and an unfamiliar place with unfamiliar smells. For others, it's the sensory issue of lying back in the chair, someone touching around and inside their mouth. It's a change of routine, an out-of-place event in a life that must remain relatively the same.

I have a dear high school friend who is a dentist and that's how we started - Emily would come in every 2 months so it would be familiar and hopefully positive and Dr. Dan would let her roam, climb on the chair, look through the drawers, and brush HIS teeth. He never got to touch hers however, so he eventually referred us to Dr. Chad - a wonderful man who sees a lot of special needs children and someone who is on my "Awesome" list.  

When we got there, the receptionist hands me a clipboard and papers to fill out. I chuckle to myself knowing fully well I will get as far as entering the date before I have to go chase down Emily as she "explores" the backroom. Throwing down my belongings, I dash after her, her quick little legs and curious mind taking her all over the place. Again, I hear myself laugh as I remember there used to be a time where I would never have let my purse out of my sight, and there it lay, wide open, in the middle of a waiting room full of strangers. "Emily, NO" I say over and over as she squirts the water, plays with the chairs, the lights, unrolls the stickers, and runs through the file room. "Emily, that's not ours" I say when she tries to take over the receptionists chair, computer, stapler, and markers.  I shuffle her back to the waiting room for about 8 seconds and then she is off to the back rooms again. At this point the receptionist decides it would be a good idea to go ahead and "just put us in a room to wait" Autism has it's perks, you certainly don't wait around for an appointment.

Inside the room is a cornucopia of buttons, switches, and lights for Emily to experience. She goes to work, pressing, flipping and pushing, and on cue within seconds is a hygienist inside our room. "Sit down, Emily" she says in a nicely tone, to which Emily responds by throwing her Jessie doll at her. I pick up Jessie and set her in the chair, "Look! Jessie is sitting! Come sit with her!" "NO" is the response for that, and for a moment I am happy that she actually understood and responded with an actual word. A mini chase ensues around the chair in what I swear is a 6x6 room, and I give up. Dr. Chad comes in. "Good Morning Emily! How are you?" "OUCH! ...Are you Okay?" is her response, her go to phrase when something is not right and she is NOT okay. As Emily straddles my waist and I tip her head back into the dentists lap, I hold her little fists tightly in my hands as he counts and checks her teeth. She kicks into my back, wriggles her head into his chest, and tries to scratch my hands as he quickly and seamlessly applies a fluoride treatment. A rodeo scene flashes through my mind - the event where they let the calf out of the gate and it runs like a bat out of hell and the cowboy has to chase it down, wrestle it to the ground, and tie its legs together, and upon finishing, throws his hands up into the air. Emily is done, we release our grip, throw our hands in the air, and she pops up and out of my lap faster than if you had sat on a tack. She takes a couple of laps around the room yelling, "ALL DONE! ALL DONE! OUCH! OUCH!" Wiping her mouth and spitting on the floor, for fluoride is gross and foreign and she certainly did NOT authorize such a violation of her mouth. Dr. Chad and his hygienist, for their all their efforts, are rewarded by a punch to the back from Emily, and not to leave her mother out, I get one too.

She is pissed and bolts from the room back to the waiting room. Dora is on, and that calms the mood a bit. I get her coat, wipe her tears, sign to her that she is OK, sign that Mom is happy that Emily did such a good job, and that I love her. I give her big squeezes and put on her pink Santa hat. As I zip up her coat, I hear a voice behind me... "You. You are such an awesome mommy" It takes me a second to realize she is talking to me, after all, I AM the one that just got punched in the back.  Choking back tears I whisper a barely audible "Thank you" as I absentmindedly tuck a lock of Emily's hair behind her hair and touch her cheek. I compose myself for just a second or two so I can turn around and look her in the eye. "Thank You." again I say it, blinking back tears. She asks a few questions about Emily, and I answer them and then she says, "Well you do such a great job with her, and it shows" And then Emily, as if to show off, walks up to a Christmas knick-knack and spells out MERRY CHRISTMAS. 

The best Christmas present this year is not wrapped in paper or fancy bows, but a stranger in a dentist office sharing a heartfelt thought. I will hold that woman in my heart forever. I hope she knows just how much that meant to me and how much I cradle every word she said delicately in my heart. 

I AM a awesome mom. And my daughter SHINES.

Twickn Tweet.....FINALLY!

I am a little backed up on my blogs, so bear with me in December as you read about October...

Every Halloween we do the same thing....we close up our house and head over to my parents neighborhood. It is a kid-friendly, well-lit neighborhood with plenty of Trick-or-Treaters running around with their plastic pumpkins filled with candy. Living in North Dakota, we have lucked out the past few years with the weather and although chilly, have not had to Trick-or-Treat in the snow. (Don't laugh, it has happened)

Emily was diagnosed in the Spring of 2008. That Halloween was a hard one. Our two boys eagerly got into their costumes and grabbed their pumpkins, anticipating filling it to the brim with goodies. Emily, at 2 years old, wanted nothing to do with it - she didn't even understand what was going on. At that point, she had no eye contact and could only communicate by shrieking and grunting. When we got to Grama & Gramps, the boys jumped out to score their first handful of candy from them while we got Emily out. We watched sadly and with jealousy as the other parents walked hand in hand with their toddlers dressed in adorable costumes and we put ours in a stroller. Our hearts sank as they rang my parents doorbell and they said in little squeaky voices, "Twick or Tweat!" while we tried to stop ours from screaming and shrieking. We followed the boys from house to house while we waited on the sidewalk by the stroller, rocking it back and forth because if we stopped the motion, Emily would shriek. I felt like I had an infant, not a toddler in my stroller, and as I gave her a bottle to calm her down, I cried cold tears. When we got home, my boys ate until their tummies hurt, and I cried myself to sleep.

The next Halloween, I wandered through the girls costumes and selfishly bought a Snow White costume for Em....just in case. The days leading up to Halloween, I brought out the Snow White dress for Em, and much to my surprise, she wanted to put it on! My heart exploded with joy and big, fat happy tears rolled down my face as she ran to the mirror to spin around to look at herself. The day rolled around, and this time, my oldest son was "too cool" to Trick-or-Treat, but Ben couldn't wait. I got Emily in her costume and we traveled to Grama's. We had some apprehension, Emily was too big for a stroller, so she would have to walk. This could be a disaster. This was one of the first of many times where Emily blew us out of the water. She not only walked next to us without running and bolting away, but she followed Ben up to the houses! Quickly, I whipped out the extra pumpkin I had brought in vain for her to carry! By this time, Emily had learned to enunicate a bit, and we were just starting to teach her a few words in sign language, so through tears and unbridled joy I heard her say, "Tandy" and as she signed, "Peese". SERIOUSLY! DID SHE JUST DO THAT? Then next house, "Tandy, peese" NO WAY! ...now we did have a few bumps - she blew out everyones Jack-O-Lanterns, traded candy with the people handing it out and ran into a few peoples houses, but all in all.....what a difference a year makes.

This year, we knew it was going to be a good year. She loves Jessie from Toy Story and had been wearing her costume for weeks now (non-stop I might add), but I still didn't know if she really UNDERSTOOD what exactly Halloween was. Again, to Grama's. She got out of the car and didn't even have to follow her brother....door after door, she ran up to them, rang the bell, held out her pumpkin, and this year from her lips, "Twickn Tweet" She got her candy, signed AND said "Thank you" and off she was again. The smile on her face and the twinkle in her eyes as she galloped across the yards made me realize...She gets it. She knows. I exhale.
....People cry at different holidays for different reasons, but I don't see many moms sobbing on sidewalk corners during Halloween like I did this year. I reflected over the past Halloweens and how far Emily has come in these past few years, what she has accomplished, how she has grown. My heart bursts with pride and joy over my daughter, my family, myself.
Halloween has become a sort of judgement day, a marker for Emily's progess, and I look forward to what the next one will bring. I'll bet she blows us away again.

Where's Emily's shoes? ...Oh, she ate them.

They say hindsight is 20/20, and I believe that to be true.  When something happens to you and you are in that moment, you can do nothing but react to that moment.  It's when the moment passes, and you reflect on it, possibly several hundred times, that you can see the moment for what it truly was - and it is then I do believe you learn from it, and you grow.  

If I had wrote this during the week that it had happened, it would have been full of anger, sadness, frustration, and utter helplessness. It would have been a plea to God to help me figure out my daughter, help me figure out this Autism that shook up her brain like a snow globe that got tipped off a shelf. A fist to the sky, shaking "WHY!?!" 

But now...now I feel smarter, stronger, and actually have a little bit more peace in my heart. I have reflected, I have seen it in hindsight - and I share my knowledge with you.

A few weeks ago, Emily started refusing to ride the bus. By refusing I mean screaming, shrieking, biting, spitting, stripping down naked seconds before the bus came, and throwing rocks at the bus when it did. RE-FU-SED.  It drove me MAD.  The week before, she loved it, looked forward to it, and left with us both smiling.  So, why the 180?  Why does she hate it this week? Why is she acting like this? Frustration sets in. Your mind starts racing, and digging through the mental library of information tuck into the nooks and crannies. I felt like Scooby-Doo and the Gang running from room to room trying to find the bad guy - in this case - the answer.  Every day was a struggle, every day my heart broke a little, and every day the confidence I had gained as a mother of an autistic child slipped sadly away into the depths of nowhere.  I cried in my car, I cried in my house, I cried myself to sleep.  After 2 days, I stopped wearing makeup - it didn't seem to make much sense.  I sobbed on the phone to my mother, my husband, my friends. By Thursday, I was a mess - I couldn't think straight, anxiety had robbed my appetite and my sleep and left me with a purpetual headache and constant stuffy nose. 

Then, Friday morning came. Yes, it was only one more day, but it was still ONE MORE DAY.  I can't do this, I can't possibly drag her down the lawn one more time, can't possibly break down on the front stairs again.  And then, then my husband came home. Took the day off to hold my hand, to help me cope, and although I didn't know it then, he would give me a sense of perception on the entire week that gave me back my sanity and my strength.  We got Emily ready together, and he watched and I dragged her to the bus, her fighting me everystep of the way.  Tears welled up in my eyes as I apologized for the 5th time that week to the bus driver, and for the 5th time that week I hear, "It's OK".  I watch the bus drive away with her screaming inside it. 

Game over. My body is done. I start to hyperventilate and go numb. Uncontrollable tears stream down my face and I barely make it to the stairs where my husband waits for me. Sparing you the details of how my husband talks me down and out of my anxiety attacks, I am done and he hugs me and kisses my forehead and begins.....

He explains that of the range of her meltdowns, this one was not that bad. It's not "Zoo" bad. Not "Have to leave Grama's" bad.  And that helps.  It helps alot. 

Over the course of the next few days I start to put together the pieces to the puzzle of that week.  The symbol of Autism couldn't be more perfect.  Thats what these kids are - one big puzzle.  But the pieces are all the same color and God doesn't give you box with the picture on it for reference.  I think that sucks, but on the other hand, I have always been super awesome at puzzles, so bring it on.

So many things can affect these kids, things that unless you are submerged in this world, you would never ever think of them.  They can have heightened senses, and the hum of the lights, the feel of their clothes, the smell of someones shampoo, can send them into a frenzy.  They can also be affected by the change of the seasons, the phase of the moon, time change, and the stress levels of the house.  

Another gem of information that I was blessed with was shared to me by a man with Aspergers.  If you can imagine your child as a character in a video game, with one of those "health bars" in the upper left corner.  When the health bar is green, life is good, they can take hit after hit, but still go on.  But, after enough hits, the bar goes to red, and by then, all it takes is one more hit....then GAME OVER.  Emily hit Game Over.

Emily took several hits that week - more than I had realized until I had gained my hindsight.  HIT: There was a full moon.  HIT: It was around the first day of fall.  HIT: I had started finding the full skins of grapes in her stools and had figured out she must have ate almost a pound of grapes.  HIT: I also started finding small to medium pieces of black material in her stool. I was puzzled until I found what was left of her black patent leather Mary Janes under her bed.  Yup, you read that right - she ATE HER SHOES.  

My mantra, what I say to myself over and over again to prevent me from going crazy is this:    Everything happens for a reason.  I have to look for what God is trying to teach me, I must learn and grow and find the good, even when it feels like the world is crumbling around me.  Everything happens for a reason.  It allows me to accept the shitty things in life and have no regrets.  Everything happens for a reason.  I had to go through that week of hell to understand a few more things about my daughter so she can be everything she is destined to be. 

Everything happens for a reason.  Find it.  Learn and grow from it.  Peace will follow.  :)

No Judging Please - This Is Our Living Nightmare

Today my heart is heavy. Another Autism mother burys her beautiful child and will never be the same. That child is Mason and his story is so close to ours that it creates a sick panicky feeling in my gut and a lump in my throat the size of the world. 

Mason was 5 and had Autism. His sister was taking care of him when he escaped out his bedroom window to find a nearby pond full of delightful water that most Autistic children are drawn to. He drowned.

You ask, "How can this happen?" You wonder, maybe judge, "Wasn't she watching him?" I'll tell you - it happens fast.  Faster than lightning.  You cannot judge, all it takes is an instant. If you judge her, then you judge me, for Emily has escaped as well.

The first time was about a year ago. Everyone in the house was going about their business - the boys watching TV, and me folding laundry in the other room. I should also explain that this family lives their lives in 3-5 minute increments - meaning, every 3 to 5 minutes, someone checks on Emily. Checks to see if she has got into the lotion, shampoo or soap. Checks to see if her diaper is off and she is smearing her feces into the floor. Checks to see if she is downstairs playing in the cat box. Checks to see if she is in the backyard eating mud or sand. Checking, always checking. We had just checked on her...she was safe. I walked into the kitchen and I just KNEW. I felt it. She wasn't in the house. Panic races through your body and grabs your heart and your blood turns to ice.  It felt like it took forever to get to the front door, and once I did, I could hear the honking of horns. Oh God....NO! There, running down the middle of the road at dusk in a diaper is my daughter. Oblivious to the traffic, the horns, the screaming coming from her mothers lips - all she notices is how wonderful it feels to go fast and feel the wind whip into her body. I've said it before, but it bears repeating - SHE IS FAST. I catch up with her a block down the road, pull her onto the boulevard and weep.

The next day, locks go up, barricades are created, and everyone is on high alert. We are safe....or so we think. The thing about children with Autism is that they often have a one track mind when they want something and that thing becomes their world for that moment in time. Nothing, NOTHING else matters. Most often they lack the ability to sense danger, the ability to be cautious. Emily has no fear. No fear of water, fire, strangers, cars, dogs, height, or anything else you can think of that a neurotypical child would be cautious of.

Fast forward to this summer. A brand new park was put up in the neighborhood this summer, and although you can't see it from our house, it is just across the street and around a corner. Emily was playing in our fenced in backyard in the sandbox right under the livingroom window. Ben wanted to play UNO. So, I checked on Emily, and sat down in the living room under the window to play. Shuffle. Shuffle. Deal. "Ben, hop up and check on your sister please" A look of terror spreads across his face as he turns around, "MOM! SHE"S GONE!!!" Oh God, how can that be? I just looked into her eyes, just told her to not eat the sand, just to play nice. If the front door wouldn't have opened for me as I pounded it open I swear I would have made one of those people cut outs like you see on the cartoons when they go through a wall. Where, where are you baby? Oh God, WHERE ARE YOU!?!? I see no cars askew, no blood in the street, hear no cars honking and say a quick silent prayer to God for that. THE PARK! Taking off in my bare feet, I sprint towards the park and I see her, running towards the slide, sunlight bouncing off her hair.

Catching up with her I swing her up onto my hip and hug her as my tears wet her face, her hair, her smile. I can't hold her tight enough. I never want to let her go. "Shlyde!" she points, and laughs. She has no idea. All she wanted to do is slide. 

As we walk back, a car pulls up and a 20-something girl gets out. "Are you her mother?" a snotty tone rings out in my ear. "Yes, I am" I replied, now noticing how out of breath I am. "Well, what kind of a mother doesn't notice her kid missing? She was almost hit by two cars, one of them being us! Seriously, weren't you watching her?"

I wish I could tell you everything I said to that girl that day. Some of it I honestly don't remember, some of it I cannot repeat because my mother reads this. But I do remember saying to her, "It's called Autism, Google it B*tch." Anger. Fear. Exhaustion. My heart pounding and my legs screaming at me, I carry my daughter back to the house, put her on the sofa, and call my friend who also has a child with Autism and he wanders too. I start to hyperventilate as I choke and sob and tell her my story and weep and weep and weep. So close, I came so close. My Emily, my beautiful precious gift from the heavens could've been taken away from me in an instant. 

She had squeezed her way out of the backyard gate through a space that my cat has a hard time getting through....she wanted to go to the park. She wanted to slide.

All Mason wanted to do was play in the water.  And now, we all mourn the loss of yet another child and our living nightmare continues.....is our child next?

A School Bus Full Of My Memories

Emily started school this week, which mean all last week I worried. I worried about her new schedule, her new teachers, therapists and paras. I worried she would meltdown, throw things, hurt herself and other people with her outbursts. I worried she wouldn't transistion well, be counterproductive, and most of all, miss me.

One worry by one worry she squashed them. Squashed them all. Her new schedule (afternoons this year compared to last years mornings) suits her. Her new teachers, therapists and paras - well, she can't stop hugging them and she lights up when she shes them. Meltdowns? None to speak of so far, and her transistioning has improved so much since last year her old teachers are "wowed". And, yet, the last one - the last one is the hardest.....she doesn't miss me. At all.

Her teachers suggested she ride the bus to and from school - it would help establish her routine for her and set her up for the transistion into school. I reluctantly agreed while selfishly inside I sob, "But what about me? What about my routine? My transistioning?"

This is the first year I have put all my babies on the school bus this year. Well, they are not babies anymore. Noah is a freshman and Ben is a second grader but every day of every school year since they were 3 I have dropped them off and picked them up. Eleven years of listening to music and singing. Eleven years of asking about their days and listening to the answers. This year, "POOF!" it is gone like a flash of lightning. I watch them walk to the bus stop and get on and I am jealous of that bus, listening to my babies jabber to their friends and carry their precious bodies to school. I am sad as they drive away, leaving me alone in the driveway with my lukewarm coffee in my jammies. Towards the end of the day I check my phone a thousand times for a call that says they have missed the bus so I can pretend to be annoyed when inside I would be elated to go get them. The very least I can do is pace outside in my driveway and pretend to weed my garden until I see them hop off that bus and smile at me.

So when Emily's teachers suggested this, my heart sank and I felt it thunk against my feet. She is my last baby, and I thought I would have more time. More time to look in the rearview mirror and watch the sunlight dance against her hair. More time to listen to her ever increasing recognizeable speech, not caring that most of it is scripting from animated movies. Just those few extra minutes I get to see her smile and listen to her laugh.

This is a new pain I have not experienced. And it hurts. Even if it is for her benefit, I am so reluctant to let her on that bus. So reluctant to let them experience the joy that is my daughter. That is my right. And for the greater good, it has been stripped away from me.

No longer will I get to hear her say, "LOOK! Ish my shkool! Emmees shkool!" No longer will we get to walk hand in hand to the car where I put her in her seat and she looks at me and smiles and says, "Cshicken? Joooce?"

Oh, I know I will see the joy in her face when she gets to ride the "Shkool bush" Watch her run up to it like it's a rocket ship to the moon. I will get to see her explode with delight when they drop her off and she runs into my arms....and in time, I will get accustom to this new joy and forget the old ones. But today, I feel a little bitter as the School Bus drives away with all my memories....