How to Be Realistic While Holding Out for a Miracle

Monchichi was twelve months old when he really began to babble. 

“mmmmmm”

“bababababa”

“moooooooo”

They were sweet sounds for sure, but I took them for granted, because let’s face it, all kids babble right? 

Had I known then, that just a few short months later silence would overtake him and plunge us into years of misunderstandings and grueling guess work just to figure out what it was he needed or wanted, I would have treasured each and every syllable that passed through his perfect baby lips.

It wasn’t until October 2006 that I heard the sound of his speaking voice again.  We sat on his bed, he and I, absorbed in Dr. Seuss’s “Green Eggs and Ham,” and as I read the book for the fifth time in a row that afternoon, I heard a distinct “how” coming from my non-verbal child.  It took only seconds for me to realize that he was trying to say “house,” mainly because he kept pointing at it on the page.  “Not in a house,” I said.  Sure enough, he repeated “how,” clear as day.  I read it again, and he grinned as he realized I understood what he was getting at.  I tried not to startle him with the sudden waves of joy that crashed over me;I hugged him tight, careful not to crush him, and did what any proud and hysterical mother would do in similar circumstances:  I told the whole freaking world.  I called my parents, my husband, his parents, my sister, my best friend, and probably the greater part of Los Angeles and Orange Counties because This. Was. Big. News.

It was the first time since he went silent that I allowed myself to hope, just the teensiest, tiniest bit, that he might one day talk and tell me that he loves me, and that I make the best banana pancakes in the world.  Or maybe he would tell me to go straight to hell.  I. Didn’t Care.

I just wanted him to talk, and at this point, “how” was the closest thing to a miracle we’d ever had.

Three and a half years later, my son is still considered non-verbal.  He didn’t wake up one morning and begin to speak in complete sentences.  It’s happened before, with other kids, and my mom swears it will happen with her grandson one day, but I’m not convinced that it will be that easy, especially when I see him struggle to purse his lips together and create a distinct “p” sound during speech therapy.  He has come a long way though, adding over 100 verbal approximations that can be understood by a trained ear.  You would recognize his “yeth” or “no,” and most of his color words (“ur-el, for purple and “el-ow” for yellow are my two favorites) but for the most part, it takes someone who really spends a lot of time with him to understand what he’s trying to say.  We’ve used a Picture Exchange System with him for years to supplement the approximations, but he’s outgrown the simplicity of this communication tool, and is no longer interested in giving us cards with pictures on them. 

He wants to be heard.

I want him to be understood.

Which brings us to the present.  At eight years old, Monchichi deserves to be able to express his ever-changing and developing needs.  And he has yet to wake up and tell me “I could really go for some of those banana pancakes right about now, mom.”  So we have to get realistic about the current development of our son and what we have to do, as his parents, to meet his needs; without giving up hope for that miracle my mom keeps talking about.

I know we have to buy him a communication device.  Something that will speak for him.  Something that will give him the opportunity to “talk” in a more efficient way.  Something that will take the place of the words that are meant to come out of his mouth, but that just can’t find their way. 

And this is a big deal to me.  Because, of course I will not stand in the way of my son’s ability to have language at his disposal.  Isn’t that a God-given right?  What I do struggle with is the idea that purchasing this gadget, in a way, forces me to admit that we are no where near where I allowed myself to imagine we would be at this point in his life.  And I feel that in order to accept this technological assistance, I have to sort of admit that there is a great big really possible chance that he may never actually talk. 

Crap. You know?

So here I sit, researching tools that could help Monchichi live a higher quality of life, giving him the words he cannot utter himself, because he deserves it and needs it and we’re going to do everything in our power to give him whatever he needs to have an unbelievable life filled with fair chances and real opportunities.

But I would be lying if I didn’t admit that as I mentally compare which device would potentially work best for my beautiful son, my heart dares to yearn for the day he looks me square in the eyes and says “Go to hell mom.” 

 

Technorati Tags: autism,best,orange county,mom,communication,non verbal

Boneless Skinless Chicken Breasts; Good for the Waistline, Bad for Blogging.

Did I ever tell you about the time that I was an immigrant from Poland and spent the rest of my childhood trying really hard to fit in with my American peers, while my mother continued to undermine my efforts by packing soggy Polish sausage and tomato sandwiches on rye bread which would create an odor not unlike something you would use to evacuate a small country and I would beg her to please just make me some peanut butter and jelly on soft, fluffy, white wonder bread because after all, nutrition is so overrated so the next day she would add sprouts and horseradish to my food just to show me who’s boss and for some reason, no matter how hard I tried, no one ever wanted to trade their ding dongs for my homemade dill pickles (get your mind out of the gutter, geez) and while the other kids ran around the playground in their jelly shoes and velcro vans, I pranced around in Kmart sneakers that were too cheap to actually have a brand name and were held together by a dark yellow glue that had oozed along the seams and dried permanently and also my last name was Bartlomowicz, which was hard for anyone to pronounce so the kids took it upon themselves to rename me Joanna Barfsomemoreguts which for some reason made me feel like maybe I wasn’t very popular and on the off chance that I was able to land a playdate with some poor shmuck my mom would offer them tripe soup as an afternoon snack and by tripe I mean the stomach lining of a cow (in all fairness the soup actually rocks, but not when you’re nine and not Polish and allergic to anything that doesn’t come from a box and is made by Kraft) and have polka music playing in the background while trying to make small talk about the lush green landscape of her homeland in broken English and then my grandmother would come in and smile with her one gold tooth and offer to cure any ailment we may have been suffering from with a cheese cloth dipped in vinegar and honey and after my playdate was over I would lock myself in my room stuffing my face with alternating spoonfuls of neopolitan ice cream I had swirled together to create the ultimate blend of yumminess and cooked shrimp with cocktail sauce which brings me to my point.

I’m hungry.







I sure hope my diet isn’t affecting the quality of my posts.

Take That You Little Turd

I took the kiddos to a birthday party yesterday without my husband.  He was stuck at home with some manual labor chores and as I pulled out of the driveway he looked absolutely miserable, holding his 12 pack of imported amber ale in one hand, a large cordless power tool in the other.  I tell ya, it was all I could do not to turn the car around and demand he join us for fear that his Saturday would be ruined otherwise, but when I looked back to blow him one last kiss, he had disappeared.  It must have been too much for him to bear to watch us depart.

Not long after we arrived at the party, Monchichi walked by the bounce house where Superman was, along with several other kids.  Suddenly, I heard someone shout, "Hey S#%*! Hey you little S#%*!" and it took only a millisecond to realize this kid was yelling at my son.  My. Son.  The son that can't whip his head around and tell this joker to shut the hell up.  The son that doesn't play with the other kids because he's not sure how, and he couldn't possibly keep up.  The son that was wandering through the yard, minding his own business, enjoying the simple things; the things we usually forget about and take for granted.

I was only a few feet from the bouncer and with my hands and heart shaking, I began to make my way over, not really knowing what I was going to do or say once I got there.  But before I could charge towards the craphead that made the mistake of picking on my kid, I heard Superman's voice, loud and clear, taking on this foul-mouthed bully.  "What did you just call my brother?  Did you just call my brother the "S" word?  Hey!  What did you just call my brother?!" 
I watched as my secondborn, a skinny child of six years who still needs potty break reminders defended his big brother in front of everyone, without thinking twice about it.  Without skipping a beat.  Without worrying that he may have appeared uncool or would get laughed at.  And I watched as the boys in the bounce house became silent, hanging their heads in brief shame for having laughed at something that was so obviously hurtful to their friend.

I made my way over to Superman, and after seeing the look of anger and shock in his eyes that someone would say something so cruel to his brother, it took all of my inner strength not to scoop my kiddos into my arms and head for the hills.

But I knew better.

I knew that the boy who said what he said does not know Monchichi.  Does not know that he has autism, or that he cannot talk.  He did not happen to single him out because he has special needs and that the only reason he was a target was because he was in the right place at the wrong time. This is a boy who would probably say the same thing to just about anybody else who crossed his path, and I have a feeling that he may be what you and I would call "a handful" in this industry.

I knew that maybe this was the first time someone had been so directly mean and rude to my son, but that it wasn't goint to be the last, and that unfortunately, there will be a time when he will be picked on because of his disabilities.  But we can deal with that as it comes.  Each experience thickens the callouses that allow us to function as a family and rise above what may sink others. 

I knew that Monchichi had not heard him, and even if he did, he would not have understood what this kid meant, and I was grateful for that.  That in some ways, he is protected from truly absorbing the kinds of words that are not supposed to be used by six and seven year olds to verbally assault a peer. 

And most importantly, I knew that Superman had his back.  Instinctively, he went into action, and it was heartfelt and passionate and appropriate.  I've always known that he is a special kid, hand picked by God to be the "older" younger brother to Andrew.  I have often called him a hero, because he is heroic in so many ways each day, as he tries to find his place in the world, making sure not to leave his brother behind. 
But I'm not gonna lie. 
Seeing him in action on Saturday was pretty freaking cool. 
And I let him know it. 

Because I'm counting on him to remember what it felt like to hear someone be a turd to his brother. 

But mostly, I'm counting on him to remember what it felt like to do something about it. 

You Are Appreciated

Everyday
I send my eight year son to school.
Each morning, I wait outside with him for the little bus that winds its way up our hill and parks in front of the driveway. 
I hug and kiss him all the way up the bus steps, handing him over to his wonderful and very competent driver at the very last possible second.

My fingers touch the window next to his seat, and because he loves this bus and the fifteen minute drive to school,  he is overjoyed as he departs and he flashes me one last grin before the bus rounds the bend and he disappears for what seems like forever.

And everyday
it takes all I have in me
not to buckle at the knees
collapse onto the rough earth
and sob uncontrollably
until my ears ring
and my lips tingle
and my head pounds

and grab him off that bus
and never let him
out of my sight
again

This may sound slighty dramatic to you

But.

Each day, I send him into the care of others

strangers each September
household names by June

my precious everything
is unable to defend himself
or reminisce about his day
my reason for living
relies on these people
for
everything

and
so
do
I

This week is Teacher Appreciation Week.
There is not one materialistic gift
that could even begin
to encompass
the gratitude I feel
towards the people
who keep my son
on solid ground
while he is somewhere other
than in my overprotective arms

Tomorrow is Thank You Card Day
and though he is unable to put into words
what he probably feels in his heart

I am.

So thank you
"Team Ashline"

You
Freakin
Rock.




*We Love You:  Mrs. S, Ms. M, Ms. Q, Ms. E, Mr. R, Mrs. J, Mrs. R, Mrs. B, Ms. J, Ms. N, and our beloved sidekick, Ms. Heidi*

Facebook Through the Ages

Sebastion Smith Is crapping in his diaper.  Can't wait until mom gets a "load" of this!

Veronica Wellington Is sick and tired of circle time and yogurt for snacks.  Also, ran into that b*#! Astrid in the sandbox again.  She better watch it during nap time.

Rob "the snake" McAllister Is Wasted!   Dude.  Beer.  Lots.

Lori Kestolowicz Adams  Coffee's on.  Dropping off Stella at preschool, then taking Forest to his doctor's appointment.  Then a pit stop at Target for some dryer sheets and pantyliners.  Then pick up Stella, and have lunch with my mom at Z's in downtown.  Yum.  Then back home to pick up the dog, and take him to the vet and groomer's.  Then time for laundry and some yoga while the kids take a nap.  Then making fish tacos and

rice for dinner.  Then Zack comes home from work and we'll argue about the budget and his hot secretary.  I'll cry and we'll make up and then even though I'm tired, I'll put out and once again end up unsatisfied and feeling like a two bit whore. Finish the night off with a fifth of vodka and some brownie batter .  Happy Tuesday everyone!

Rhonda Fairbanks  Is crapping her diaper.  Also thinks she accidentally mailed her dentures with the electricity bill. 

Diets Do Not a Good Blogger Make

I haven't felt like blogging much lately.

Mostly it's because I'm on a diet.

It's sort of taken away my whole will to live and also, most of my free time is spent weighing myself and graphing minute by minute changes in my @ss to waist ratio, which, according to my latest calculations, is somewhere in the area of "move aside folks, let her through," and "ma'am, the only thing we have in your size is this lovely parachute."  You can imagine how inspirational this process is.

Truthfully, part of the reason I started blogging in the first place was because it was the perfect opportunity to binge on laptop friendly fare such as anything with a sugar content above 250 mg. per serving.  The creative juices (can't have juice either by the way) just don't flow as freely when I'm nibbling on butter leaf lettuce (whose name is completely misleading, as there is not an ounce of butter anywhere to be found).

But things are going great.  Why just the other day someone walked by me wearing the most sweet smelling perfume and I was able to show true restraint and dedication and only lick her a little. 

Wait.

I just thought of something alarming.

What if I'm not as funny or entertaining when I'm all skinny and hot? What if I no longer have the ability to mesmerize my audience with my wit and endless literary talents and instead begin posting sexy pictures of myself in alluring outfits and end up with a reality show and a Sports Illustrated cover shoot? Surely my new bikini bod and subsequent fame will end up isolating the majority of my readership who, let's face it, could stand to get on the stationary bike now and then (of course I don't mean YOU honey) and then what? 

No.  I've thought long and hard about this and it just wouldn't be fair to do that to you guys!  You've been loyal readers for at least the duration of this post, and so the least I can do is take one for the team and undermine my weight loss efforts with an old fashioned high fructose corn syrup binge every once in a while.

I know.

You can thank me later.


When I'm in the hospital, recovering from my diabetic coma.

*Hey.  It could be part of a nutritious breakfast. 

I'm Confused

So my husband stayed home sick today. 

I left him this morning, in bed, watching televsion, with a box of tissues next to him and plenty of fluids, cough drops, and fluffy pillows under his head.

I just got home from work and

The dishes aren't done

Dinner isn't made

The laundry has not been washed

And there is a general funk in the air that I will not describe in order to spare your senses and appetite.

He's just laying there.

Resting.


The nerve.


Am I missing something?




*Two reasons I'm not posting the full picture.  1.  He would kill me.  2.  It's not pretty folks.

Thoughts On Motherhood

*I remember thinking that as a Mother, I would spend my days bestowing wisdom upon my offspring, offering them my sage advice, teaching them the ways of the world and how to navigate through it safely.  How surprising it was then, when it turned out that they were the ones teaching me about life.  Oh sure.  I've taught them proper dinner table etiquette, how to brush their teeth, and the importance of a good scrub in all of the hard to reach crevices during bath time.  But their lessons have been far greater in meaning and substance; unconditional love, unyielding patience, true forgiveness, and that dirty little elbows on the dinner table never killed anybody.

*My first Mother's Day was in May of 2002.  Monchichi was two months old and the family decided to meet at a favorite local Chinese restaraunt for dinner.  Despite the post-preganancy bulge that stubbornly refused to budge, I dressed up and made sure to take extra care with my hairstyle and makeup.  I felt exuberant as we sat at the table, having now become a member of this sacred band of women, all somehow connected to one another that day by the joy that is Motherhood.  Sometime during the first course, I heard a loud explosion, and when I turned to look for the source of the startling noise, I realized my eight week old baby had just blown out his diaper up to his neck, in the middle of this very special dinner in this very nice restaraunt.  Needless to say my appetite was compromised (which is a rare occurance) and the reality of motherhood bitch slapped me right across my sense of smell.     At least my children are consistant though, because s!#%'s been hitting the fan ever since.

*My mother was 31 when she packed up some ratty suitcases and fled communist Poland with her family.  The year was 1981, two weeks before Marshall Law.  I was four, and my baby sister was barely eight months old.  That woman had balls of steel to just pick up and go like that into an unknown future, hoping that it would at least be better than the dismal state of her homeland.  She was a woman with a college degree who scrubbed other people's toilets while she learned to speak English, making sure that 1. the bills were paid and 2. her children had the best juice to drink and the freshest fruit to eat, even if it meant that she was stuck with bread and butter and stale coffee.  She worked days, she worked nights, she kept my father afloat when he dipped into despair and wallowed in regret for uprooting his family for a piece of the American dream.  We were never hungry, we were never cold, and despite having to endure the humiliation of owning mostly Kmart tennis shoes and garage sale toys, we made it out of our childhood intact and alive,(though the therapy bills are beginning to pile up) mostly because of her.  So thanks Mom; for being such a badass.

*I read a quote today, which I think sums up the essence of motherhood quite nicely.  So I'm going to pass it along for your enjoyment.  " A mother is a person who, seeing there are only 4 pieces of pie for 5 people, promptly announces she never did care for pie."** ~Tenneva Jordan

God bless all the mommies out there today.
And God help anyone who tries to come between a mama and her child.

**Unless the pie happens to be chocolate, apple, blueberry, peach, pumpkin, or is even the slightest bit sweet and delicious and I happen to be the mother in question.  Then it's everyone for themselves.

The Benefits of Being Still

Sitting

keeping your distance
as he flies a kite
for the very first time
holding tight
to the string
for some
such a little thing

for you

the kind of normal
you only get to taste
every once in a little while

effortlessly

he outruns the wind

unknowingly

filling you with love

and light

as you try to capture

his essence

through a lens

Sometimes

the very best thing

about being on the sidelines

is having a front row seat

quietly watching

as some of

God's

greatest gifts

are

hard at work

giving you reason

to believe

kite flying

is better

from

here

It All Boils Down to the Right Fork

Growing up, I knew exactly what I wanted to be when I grew up.

A wife.

I was so determined to make this happen, that when my mom's brother, my crazy Uncle Ted, finally decided to tie the knot, I made him an offer he thankfully refused.  "Marry me!" I shrieked, my cheeks tear stained as I watched him proclaim his love for someone who wasn't four and a blood relative.  Whatever.

At my uncle's wedding to that tramp my lovely aunt Barbara.

Nowy Sacz, Poland, circa 1980

As a teenager, I began dating what would later become a pathetic list of crappy boyfriends and dead end romances, continuing on my desperate quest in the hopes that my prince charming was lurking somewhere among the chain-smoking, beer-bonging losers I tended to attract.  Each time I got dumped via pager, or found out a friend had "accidentally" hooked up with one of my boyfriends during an innocent game of "peekaboo" ("How was I supposed to know that skinny-dipping would lead to that?") in some backyard hot tub, I ended up in front of my bathroom mirror, scrutinizing every imperfection, wondering if there would ever be a guy willing to love me despite.........myself.

Thank God for miracles.  Even if they do come cloaked as a $5.00 pitcher of Coors Light.

Some people meet the love of their lives in college, on a blind date, during a lunch break at Starbucks, or maybe even at the grocery store.  I've always thought that there was something sexy about the idea of locking eyes with someone while searching for seasonal plump and juicy produce, your fingers accidentally bumping into his as you squeeze the same ripe beefsteak tomato.  But everytime I found myself eyeing the fruits and vegetable section, the pickings seemed so limp and stale.

The fruits and vegetables, however, were always spot on.

I finally met my lifelong dude in a cheesy bar over a debate on creationism and a bad pickup line.  It was, by far, the least romantic setting ever, complete with vinyl checkered table cloths and a bartender that looked exactly like Moe from The Simpsons.  Little did I know that the dark haired boy with the goatee sitting across from me in this dingy watering hole was going to become my best friend, my husband, the father of my children. 
All I knew was that he was smokin hot and single.

This boy, now a man ten years older, wiser, and even hotter (especially with those little specks of grey hair that look so distingushed on him but would send me straight to Paul Mitchell himself if I ever found one)   and I; we've been through a lot.  Some good.  Some really, really bad.  We've seen the worst in one another, and brought out the best in each other.  We've screamed, cried, cursed, promised, forgiven, hoped, prayed, laughed, survived, high-fived, dreamed, and loved.  Together.  

Which is why it came as no surprise that after I had myself a little nervous breakdown on Saturday over all sorts of life-related hoopla, and asked Superman for a fork for my carb-laden lunch, my husband, the love of my life, walked over to my son and, without skipping a beat or calling the local Neurospsychiatric unit, said "No, not that one little dude.  Mommy likes these other ones, with the longer prongs, better."*  

My man knows which one I prefer.  Not my actual forks by the way.  I was too lazy to take a photo of my own  so I googled forks and these looked decent.  Still, he would know which one I would want to use, and which ones I wouldn't touch.

It's not a perfect union. 



But it's pretty damn close.



*Just another OCD-related quirk.  Or maybe I can just fit more food on the ones with the longer prongs.  Whichever reason creeps you out the least, go with that one.