The Birthday Clock Never Stops…

apple watch

Birthdays are awesome…until you’re about 22. Then instead of offering milestones to greatness, birthdays start tallying up the years. When you hit 30 the tally shows adulthood is inevitable. 35 means it’s time to actually stop lying about it and actually start a retirement fund. When the calendar flips to 40 you can literally feel your gums recede and the fluid actually drain from your knees. I’m pretty sure the number associated with my recent birthday led to my immediate development of diabetes while my cholesterol skyrocketed and I gained 5 pounds of belly fat all within a two hour span. Aging blows.

What I wouldn’t give to spring out of bed and…(wait, let’s just stop there. What I wouldn’t give to spring out of bed period.) but really, wouldn’t it be great to have the same excitement about your birthday at 50 that you had at 5? (FYI, I’m not 50…not yet man, don’t make it any worse.) You know, that kind of excitement that leads to wearing a paper crown with your number on the front and telling every human or mammal you encounter, “Today is my birthday! Give me cake!”

My darling husband, The Turk, has never been great with holidays. I’m still waiting for a much-hyped 10th anniversary celebration and we’re only a little ways out from our 11th. Anniversaries are not his jam but he is coming around on birthdays. This year he shopped for a gift almost an entire week before my actual birthday, a massive improvement over days of old when he would head to the nearest supermarket for some expired roses moments before closing. No, this year he even took the boys along for help. Unfortunately, that was where things went wrong.

Within moments of returning and seconds after hiding the goods, Nugget with his newly acquired language skills, beamed, “Mom, we got you asshole atch.” Hubba whaaaaaa? Though Number 1 son and the Turk tried desperately to shush him, Nugget would not be silenced. “Asshole atch.” He told me again while squirming away from the hands desperately trying to cover his motor-mouth.

Because I may be geriatric  but still possess the maturity of a 12 year old boy, I immediately began to see images in my disturbed mind of sparkly buttcheeks sitting atop my wrist with a rapidly moving second hand shaped like a stink cloud. This caused me to laugh even harder. (I really am 12. It’s ok. I own it.) “You unt asshole atch?” The Nugget persisted.

While I was busy wiping the tears from my face, Number 1 was livid. “I can’t believe you told her! It was supposed to be a surprise! You suck Nugget!” Number 1 was right. He did suck but in Nugget’s defense, no one had any clue he was a blabbermouth because this was his first violation.

Somewhere around two, Nugget was diagnosed with Childhood Apraxia of Speech – which involves a misfiring of neurons the prevent kids from being able to get the information from their brain to their lips to get the words out. Up until the past few months, Nugget had only signed and offered a few brief sentences using only vowels. Since he was a silent partner, for most of his 3 1/2 years, he’d been dragged along on many secret missions with all of us comfortable in the knowledge that our secrets were safe with him. Not so now it seems.

Now that Nugget has his hearing aid so he’s hearing all the sounds, is immersed in his special school with daily speech therapy and basically spends 3 hours each day working on his communication skills, he has exploded and there is no putting any cat back in any bag. The kid never shuts up.

You can see the thought process he goes through to get every sound out. His determination is astonishing. But, as illustrated in the case of the asshole ach, he’s still working on quite a few sounds like F. Every time anyone asks him to form an F he shoots back a look that insinuates F is not an actual sound and that we are clearly F-ing with him. I consider this the universe helping a sister out since he’s already demonstrated high skill with profanity thus far that last thing that kid needs is the power of the f-bomb. Sometimes only those closest to him understand him, but sometimes (usually with his favorite phrases like – ‘what the hell?’ Or, ‘oh for godsake!’) he’s a clear as a bell. It’s a process but after 3 years of silence, we’ll take every bit of it. (Until he gets suspended from PreK for that profanity bit…)

Nugget definitely blew the surprise by telling me all about my APPLE watch and quite honestly, there were about a hundred other things I might have requested over a pricey Dick Tracy wrist piece…like a dishwasher that actually washes the dishes…or the downpayment on a car younger than my offspring…or that dental work that keeps getting shoved to the back burner over and over again. But now that I’ve got it, I do quite enjoy it, probably since I spent most of the 70’s talking to my wrist pretending to be Maxwell Smart and now I’m legit.

As the Turk said, “It your birthday. You deserve special thing you do not ask for.” True that Turk, and though I didn’t ask for an asshole watch, hearing that Nugget tell me all about it is exactly what I’ve wanted.

When Bedtime Stories Go Bad…A Cautionary Tale

vintage-photos-of-readers-in-the-early-1900s-10

I’ve always loved a good bedtime story. Back in the day, I recall spending many a night waiting in horror for “The Monster at The End of This Book.” (Spoiler alert – It’s Grover. It was always Grover but you know, my critical thinking didn’t really kick in until I was like…35)

In my 8 plus years of motherhood, I’ve read a buttload of bedtime stories and we never, never read just one. Since there are only so many Big Trucks In Action books a gal can handle, over the years I’ve tried to pass reading duties off to the Turk but the results have never been good. From the other room I’ve overheard:

“Baba, you skipped three pages.”

  “They are not important to story. It fine.”

“Baba, you said that word wrong.”

      “No, that is how we say.”

“No, no it’s not Baba. Do you want me to show you how to sound it out?”

And when he’s tried of reading, he throws out his trademark ending. “And they did not listen to their parents so they all die.” Insuring nightmares all around. (Ah Turks…always spreading joy.)

Even the Nugget, Baba’s biggest 3-year-old fan, now rejects the offer of madcap adventures narrated in a monotone Turkish accent. (In the Turk’s defense, my reading of Turkish tales is about on par with his in English, and I’ve also been the recipient of, “Mom, do you need me to sound that out for you?” Damn kids.)

Over the years, I’ve voiced characters ranging from bus driving pigeons to underwear loving aliens. We frequent the local library more often than Betty Ford frequented rehab. But there is one kind of book we cannot have, under any circumstances. According to Nugget, there shall never be any books in which the characters say goodnight. Why? Because an illustrated bunny or hairy bug kissing his mommy and proclaiming goodnight is enough to send my sensitive Nugget into a deep, sobbing depression that postpones his own bedtime by at least 30 minutes.

A few weeks ago, fed up with Pete the Cat and his damn groovy buttons, I thought it was time to mix it up and try some new authors. With all books mentioning “Goodnight” off the boards, I had limited choices but thought a little known Eric Carle would be a safe bet.

Eager to merge into new territory and ready for respite from that obnoxious hipster Pete the Cat, we curled up ready for a new read. Like a moron, I did not preview the book in depth. (But seriously, who does that? Who wants to curl up with a nice chardonnay and a copy of Elephant and Piggy Go to Market?) It was Eric Carle of The Very Hungry Caterpillar fame. How could I go wrong?

Oh, I went wrong. So very, very wrong.

See, I chose The Very Quiet Cricket, a book about a little cricket who goes on a walk and gets upset when can’t say hello to anyone because he can’t talk. (Right???? What a moron move on the part of a mom who’s kid can’t talk.) As the little bug traverses the countryside everyone greets him and he desperately wants to reply but he can’t…because he can’t make the words come out….just like my little Apraxic Nugget. (Who knew crickets faced rare neurological disorders too? Certainly not I.)

In the past couple months Nugget has moved mountains in his battle to get his neurons to deliver his words to his mouth. He wears his hearing aid like a champ (though not happily) so he can hear the sounds,  spends hours in speech therapy at school and practices constantly. He’s got a handful words that come out right every time, (and might I add “Mom” is one of those as well as “Go Eagles!” because his mother and brother make him watch Eagles football on the reg.) He’s also got a gazillion words that come out in all vowels but if you speak vowel, like those of us who spend hours with the Nug do, or those who have spent serious time with drunks, he’s pretty understandable. Unfortunately, most of the world does not speak Vowel and thus he remains misunderstood by the world.

As we read further I could see Nugget’s brow furrow and soon the tears started to drip. “Ike ee om, e ike e.”(Like me Mom, he like me.). My heart broke. That damn cricket WAS just like him but  midway through the book I didn’t know what to do. Do I read on and hope we get to a happy ending? Do I seize on the moment to reinforce that there are other kids…um or crickets… like him? Do I let Nug collaborate with me on a profanity-laced email to Eric Carle about the need for a trigger warning on his picture books? (I mean it is 2016 and trigger warnings seem to be all the rage even if I think they’re stupid.)

I didn’t know what to do partially because I was shocked he’d made the connection so quickly. When one doesn’t speak the language fluently people tend to underestimate them. I know this. It happened to me when we lived in Turkey all the time. I’ve watched it happen to the Turk countless times (and then laughed when he smacked down those who underestimated him with his big nerd brain) and now I was doing it to my own son. Why wouldn’t he catch on? He’s a super smart dude. He just can’t talk. Even Einstein had a speech problem and look how he turned out.

Thankfully, in our world of bicultural parenting, I have two schools of thought to pull from and rather than getting all talkey-talkey and American, I took the Turkish mother route. We threw the book away (in a very hostile and dramatic fashion while calling Eric Carle unflattering names in Turkish) then I kissed him furiously while reminding him he was a perfect little sultan. I know this manner of Turkish mothering does make life difficult for future wives (Lord do I know that!) but he is my perfect little sultan and if the world needs to learn to speak Vowel for him, then so be it. I’ll make it happen.

 

Back To School Blows

I’ve said it before, I’ll say it again – transitions suck. I’m a routine gal and since the acorn rarely falls far from the tree, my kids are too. For the past year we’ve been in a groove that eventually worked well for us. But now, the times, they are a changin’. While sucking it up and accepting it would be the mature thing to do, maturity has never really been my jam.

This week we moved from our stable, mom’s-got-everything-covered-even-if-it-drives-her-batcrap-crazy life, back into mom’s-going-to-work-every-man-for-himself life. It’s been a year so it may take some time to transition properly. On top of that, the kids are back in school too and anyone who has traversed that trail knows the impending suckage there. (Is it a cry for help if I order cheap wine by the case at this point? What would Betty Ford do?)

Number 1 is in third grade and while we’ve been at this school thing for some time now, third grade is that year when they go from cuddly little sweethearts into smelly big boys. Thanks to his Turk genes, Number 1 has had back hair since birth so he’s already pretty manly, but having finally hit a growth spurt (one that now leaves him only a foot shorter than his friends rather than 2 feet shorter) he just seems big suddenly.

Nugget, now a mature, yet still surly, three year old, started his tour of duty on the Island of Misfit Toys…aka…Developmental Preschool. He’ll spend his mornings singing and signing, playing and partying all while bonding with other kids that struggle like him. To combat his anxiety, we had three visits to his classroom prior to the first day so I assumed we were all prepared for this. Nugget was but Mom was not.

Sitting in my own teacher training the day before Nugget’s start, I had a weird feeling of loss. Due to all his health issues last year, I could probably count on one hand the times Nugget and I have been apart. He’s been kind of like an extra appendage, sometimes helpful and often not, but something I’d grown accustomed to having. As the speaker – who was speaking on the difficult journey of special needs parents (oh the irony)- continued on, the connections were too much and the flood-gates opened. Those flood-gates remained open for the next 24 hours.

Looking at my Nugget and how big he suddenly seemed brought me to tears. Carrying his supplies in to Meet The Teacher Night brought me to tears. Laying out his clothes, wiping his butt, pretty much anything, brought me to tears. I wasn’t expecting this at all.

It all boiled down to this. My baby is now a kid and there is no going back. When kids start school time fast-forwards at an obscene pace. The years move faster, the kids change faster and their maturity grows (Sometimes, I mean, I’ve taught middle school for years so I’ve got a special understanding of the hard-fought battle with maturity.). As a family, you become part of a larger school community that links you to your community in a very different way. After all, you are now the recipient of tax payer dollars and you have a voice in the stupidity of school district decisions. (Even if they ignore your calls and delete your emails …not that I’d know how that feels…I mean, that happened to a friend…)

Once kids start school, every day goes into overdrive as you try to squeeze every second out of it between work, school, practices, homework and everything else. Everyone is running around like headless chickens and life is based around waiting for the next break.

“We can go to pool again over Labor Day weekend.”

“We’ll do something fun on Fall Break.”

“You can sleep in over Christmas Break.”

And before you know, you’ve “waited away” an entire year. It sucks.

This is the part where I’m supposed to impart wisdom and share my resolution to be in the moment or my resolve to live a purposeful life as I put work to the side when I’m with my kids and just enjoy the ride. Ah hells no. I mean come on, who really does that? Who? I’ll tell you. No one. Ain’t nobody got time for that. That’s just the crap you read on parenting blogs.

No, this year I will stock up on wine, try to remember to look at my daily calendar on occasion (before I miss appointments and those bastards charge me anyway). I will strive to make sure everyone has a lunch packed (because even when I was home last year I might or might not have forgotten a couple) and clean underwear. (Though I cannot promise Number One will be wearing them. He’s embraced the natural life and seems unwilling to go back.) Ultimately, I will put my head down and run into this everybody-is-in-school-now life, like a runty running back pushing through a defensive line (it is football season after all), while hoping like hell to come out alive on the other side.

To quote the greats, “Cover me Bree, I’m goin’ in.”

backtoschool

Terrible Twos? Ah Hells No, Now It’s The Tyrannical Threes!

birthday drama

I’m relatively certain that the individual who coined the phrase, “terrible twos” did so before his or her child turned three. There is not a parent on Earth that would honestly agree that a two-year-old tyrant is worse than a three-year-old tyrant. Ok, maybe that Duggar woman would disagree but after passing 82 children through her lady parts, it’s understandable that her sanity might be compromised.

My darling Nugget’s birthday was this week and, as usual, the date marking my successfully delivering offspring into this world makes me a bit emotional. On both of their birthdays I can’t help get little weepy as I recount those glory years, when they were cuddly and smelled like…well…babies or dwelling on life when they were tiny bundles of love that wore what I put on them and didn’t sass me or argue about every damn thing! (Previously I would have said before they could talk but in the past year Nugget has proved that one can sass and argue just as effectively in sign language so there goes that thought.)

Amid all the mushy melancholy and buttercream frosting, I had a thought. Maybe since the Nugget had such a rough go as a two-year old, what with the whole deaf thing, the apraxia thing, the bum kidney thing, and on and on…maybe the universe will give me a break and we will waltz through three like a pair of washed-up musicians on Dancing With The Stars. I mean, after the past year, don’t I deserve it?

I have good reason to fear three. My darling, kind and loving Number One Son was literally Satan on Earth when he was three. The sweet child I’d doted on since birthing him in a crazy Turkish hospital morphed into a pocket-sized Attila the Hunn the moment he blew out those three candles. Add in his adult-sized vocabulary, stubborn Turk genes and hot temper (No really, by 4 we were seriously considering anger management classes for him.) and I often doubted that kid would see 4.

Yet somehow, like childbirth, I’d blocked that horror out, until the Nugget’s big 0-3 started to draw near. As an incident over the shade of an ice pop blew into a throw-down last week leaving a sobbing Nugget clutching me, signing Why is Baba so mad? Why did Baba make me cry? and the Turk screaming Turkish profanity followed by “What the hell is wrong with him?” It grew apparent, 3 was coming to take my Nugget as well. But being the Positive Pollyanna that I am, I tried to lay out my rational as to why three would be better with Nugget than with Number 1 for the Turk. (While I took the brunt of the horror on round one, he was not left unharmed and we both suffer from Post Traumatic Turkish Toddler issues. And since Nugget is a major Baba’s boy, it’s not looking good for the Turk on this round.)

“Maybe since he’s got a few delays, the whole three thing will be delayed too and   we’ll get it in spurts instead of all at once.”

“No. You are crazy. He is crazy. This will be very bad.”

“Maybe since he had such a rough year and he’s made such huge strides this year   will be a breeze. It’s karma.”

“No. This will be bad. I see if I can travel more for work this year.”

“Maybe since we’re really old now, it won’t bother us as much.”

“No. Now I just get piss faster.”

The signs started to show around 2.5 but it was too soon so I wrote it off. But as the sass via sign started, I worried. When he began to sigh, “Uggggg Ooooooooom! (Aw Mom!)” while rolling his eyes and storming off, I saw the tidal wave beginning to form. Then, this week when he handed me a poop-filled diaper, leaving a trail of poop on my freshly (like mere hours earlier freshly) cleaned, white carpet, and began to explain that he was uncomfortable and needed a shower “Ow!” (Now!), it was clear there would be no delays. 3 had arrived like a freight train and no one would be spared.

But as I cuddled a chubby little birthday boy who somehow appeared in my bed in the middle of the night, I got a little weepy thinking about how much has changed for him in the past year and how much he’s accomplished. Last summer he was lethargic and miserable with a kidney that just wasn’t working and now he’s an unstoppable ball of fire. Last summer he was so angry because he couldn’t hear or communicate and now he gladly wears his hearing aid and communicates in both ASL and spoken English (though he’s still only using vowels, he knows what he’s saying even if the rest of us don’t.) Last summer we didn’t really understand all that was going on with Nugget or even what BOR Syndrome was and now we’re a veritable font of knowledge on the subject and have made great strides at getting him on track.

So even though 3 pretty much sucks and we’ll be in for quite a year, I gladly take it. Especially if it means that my baby is finally catching up. (Full disclosure: I could not have chosen a better time to go back to work.) Good luck Developmental Preschool. You’re going to need it with this one!

 

Here We Go Again…But I’m Cool With It

 

Full KubiHulkHere we go again. At approximately the butt-crack of dawn tomorrow morning Nugget will be in pre-op. Again. You might remember my grand appeals at the start 2016, begging that this year not suck. Well, now that we’re 7 months in with Trump and his hate train barreling down the tracks, senseless racist violence erupting seemingly daily, bombings in the Turk’s motherland on the reg and countless dead musical legends, I think it’s safe to say my pleading was disregarded. (Thanks Universe! This will be remembered.) 2016, it appears that much like your older brother 2015, you suck.

But I’m no Negative Nellie and I’m taking a different approach to this situation because even though my little guy will be sedated and out of my reach for a couple hours, this one is easy. This time around no one is pulling a vital organ from my Nugget to trim and reshape before stuffing it back into this abdomen with a slew of tubing and the hopes it will work again. This time we won’t be stuck in a hospital room for days, cradling a baby writhing in pain. This time we’re lucky and this year I’ve met a lot of people who have taught me just what it means to be one of the lucky ones.

A few months ago, in the children’s section at the library, I met a kindred spirit. I knew from her first F-bomb over the abstract puzzles we were meant to be. While other mothers discussed things like better options for Christian-based Mother’s Day Out programs (Seriously? What in the hell Hoosiers? I never heard of these before and I don’t get it…but you do you girl…no judgments.) my new potty mouthed friend and I were comparing notes on the two local children’s hospitals. We were discussing the merits of nursing staffs and surgical waiting rooms. We were talking about how much your prospective changes when you spend a lot of time in these places and how other parents are so lucky they will never need to know this. Then we were talking about her son.

Unlike me, my new friend wasn’t one of the lucky ones. Three months before we met, her five year-old didn’t get to leave the hospital. His rare and rapidly spreading brain tumor that initially took her through our shared experiences, took his life just months after diagnosis. When we met she was days from moving back to her native state while trying to hold things together for her younger son and prepare for the “miracle” son arriving in a few months. She was a tough broad and her story and those hours our kids played together will stick with me forever.

And then there is our Deaf Fairy Godmother’s son. After battling cancer and losing an eye to it years ago, her 19 year old is once again battling the same rare cancer he beat previously. The woman that so dramatically changed our life by teaching us how to relate to our little deaf Nugget and cheering us on every step of the way has spent the past month sitting by her own son’s hospital bed in that same children’s hospital. So far, it’s looking good and the hope is there that they will once again, be some of the lucky ones. (Now if you are a regular reader you know I’m not a promoter in any way but if you have the ability, please go to this Go Fund Me page and help out. This family is amazing. They are Deaf parents and activists of 4 deaf sons on their 3rd round of fighting cancer and they could sure use any generosity you might find.)

There are so many more families I’ve met this year fighting fights most would never dream of, so as we go into surgery tomorrow, it’s pretty easy to keep things in perspective. This time around Nugget is having reconstruction work done on some teeth and jaw parts that didn’t form due to his hard-core infant drug use. He had so much radioactive crap pumped into his kidneys those first months it’s a wonder he doesn’t glow. (Though it might explain his frequent Hulk-out moments) And he’s getting a new ear tube since his old one fell out and has been stuck in his Atresia canal for more than a month because it’s too small for the tube to fall out like in a normal kid. (Seriously, can you imagine something sitting in your ear like a bug for a month? No wonder he gets surly.)

As with anything, there is a risk. There’s always the risk of more hearing loss with the tube implantation due to his anatomy but there’s risk without the tube too. Like everything in life, it’s a crapshoot. But so far, we’ve been the lucky ones and I will always be aware of that. So tomorrow morning we’ll kiss our Nugget, then kiss the dice and hope for the best. Even when things are uncertain, (I’m lookin’ at you 2016!) perspective is the key – and hey, with only one ear to fix, it will take half as long! Perspective.

I Found Dory…Kind Of…

woman with fish

That little orange hellcat Nemo, is like a rock icon in the birth defects world. (Yes, that is a thing.) He’s the mascot for a variety of groups because what better point of reference for a one-eared Microtian (like my Nugget) or a kid with a limb difference than a sassy orange whippersnapper. For kids like mine, Nemo is the man…or the fish…I guess.

With Finding Dory hitting the big screens, it’s good to have that little finned wonder back in full force when Nugget is old enough to be targeted by the typically outlandish marketing campaign. I assumed we’d see Dory eventually, likely at home because convincing Nugget to sit through an entire movie in a quiet theatre is basically akin to overseeing union negations with a bunch of drunken longshoremen. But a few days ago in a moment of weakness, I loaded up my tiny Turks and hit a morning matinee.

What prompted such madness? Heat stroke? Hormonal imbalance? Sign language threats from a knee-high Nugget? While all could be viable options, it was none of those. Rather, in my numerous special needs parenting groups, again and again posts touted that every parent of a special needs kid needs, nay, must, see Finding Dory. Now, special needs parents are not “must” kind of people. Unlike those broads on the frontline of the Mommy Wars (which I’m pretty sure didn’t exist before Facebook and might I add – girls, this crap really needs to end.) special needs parents never tell you what you should or shouldn’t do with your kid, but rather we’re more “hey, anything is worth a try” kind of people. So these recommendations held weight.

Over the past couple weeks, Nugs and I have been butting heads like a couple of mountain goats. (Goats or rams? No clue, but you get the point.) And while I attribute much of this to turning three in a month, it’s a lot more than that. We’re out of sync. So under the guise of “hey, anything is worth a try,” I hoped that finding that crazy Dory might give me some guidance. (Desperate times my friends, desperate times.)

Nugget’s been rough lately for a few reasons. For one, having a super-talkative big brother (who never shuts up) home all summer makes Nugget want to talk…which is awesome…but thanks to his apraxia of speech, he can only say vowels with the rare odd consonant. He’ll address me with phrases like, “Ay un a o ou a oo.” If I don’t immediately translate his drunken ramblings into Standard English he slaps his head and yells, “Ugh!” If I ask him to sign it, he yells, “O om!” (no Mom) while stomping off muttering “arggggg.” It’s like living with Charlie Brown. (And full disclosure, I’ve always had Lucy tendencies. The kid better not try to kick a football…)

We’ve always battled frustration meltdowns that happen when he misunderstands situations due to his hearing loss but now, since he thinks he’s talking (I guess he can’t hear the missing sounds?) he doesn’t want to sign, so no one understands him. Add to this his genetic combo of two hotheaded ethnicities and he’s become as aggressive as a linebacker with roid rage. Just to push me a bit further, he’s also developed a new love of the spontaneous nudist life (People, things have occurred in recent days that will likely take years of therapy to erase from my memory…one word…poop.). So even Dory was worth a shot. 

Five minutes into previews, Nugget said he was done and wanted to go. (Hey kid, I just shucked out 30 bucks for tickets and we are staying at least through the opening credits!) As any good (read- cheap ass) mother does, I began pulling a small grocery store’s inventory out of my “purse” in the hopes of feeding him into complacency. That bought me ten minutes until he screamed, “air uus ox?” (Where’s my juice box?) Unfortunately, an usher was unexpectedly fluent in drunken vowel speak and immediately got all up in my business. I had no choice but to hit concessions and buy a $50 box of M&Ms.

The rest of the movie was a combo of wrestling, walking up and down the stairs (again and again and again) and watching from the entrance but at least we made it to the closing credits. And while Dory didn’t solve all my problems as I’d hoped, I did walk away with three bits of knowledge.

  1. I’m never taking this kid to a movie ever again. Ever. Never.
  2. It’s really hard to fix a hearing aid in a dark theatre, especially after it has been flung down the aisle by an angry child.
  3. The groups were right – special needs parents really do need to see this movie.

Dory’s parents wanted to shield her from the world because she was born with something that was going to make life difficult for her, much more difficult than for other fish. The same is true for parents of kids born with special needs. We parents know how hard life is and how much harder is it going to be for our special little guys. Once her parents realized they couldn’t hide Dory away, just like the rest of us, Dory’s parents armed her with ways to adapt and hoped for the best. It’s the same for Nugget. I’d do anything to make his journey easier but sometimes the best I can do is arm him with tools to make his own way. I think right now we’re just stuck in a phase of tool development and he’s testing the waters in preparation for finding his own way when school starts.

I’ve thought a lot about that damn blue fish over the past days and I must say, it helps. Not quite as much as that glass of wine after he finally goes to sleep, but the movie did make things more clear. If for no other reason, it reminded us both to “just keep swimming.”

 

 

Tenacious Mom VS City Hall

Deaf Child Area Sign

Once upon a time there was a tenacious mom with a kid who couldn’t hear so well, so she decided it might be a good idea to get a sign to warn passersby. She wanted a sign that said “Yo, Slow Down Fool. Deaf Kid Up In Here.” But research quickly showed her that signs like that were frowned upon by the founding fathers of her town. (Hoosiers can be uptight like that.) So she settled on a sign that read, “Deaf Child Area.” It wasn’t as eloquent or direct as her chosen wording but it would do. Tenacious Mom called the City and inquired about how a sign like that might be procured.

The first City secretary was flustered by Tenacious Mom’s request. “Oh ma’am, I don’t know anything about signs like that. You should check somewhere else.”

The second City secretary was confused but had the good sense to redirect Tenacious Mom’s call. “Honey, I’ve got no clue but I’ll connect you to the Streets Department and I’m sure they’ll know what to do.

Much like Goldilocks, Tenacious Mom hoped her third connection would be just right. But as we all know, crap never happens like that. Tenacious Mom left a charming message and awaited what she assumed would be an informative return call from an intelligent City official, after all, City officials are there to assist the people…right? (Aw hells no. Not even in fairy tales.)

            One week later, Tenacious Mom received a call. The man identified himself as the Superintendent of Streets and when he gave his name, Tenacious Mom –also known as Smartass Mom- bit her tongue to avoid commenting as the Superintendent of Streets’ first name was the same as his last. (For the purpose of avoiding litigation, he will henceforth be known as Steve Steves.)

“Hello Ma’am. I have a message here that you are interested in procuring a Deaf Child sign for your street.”

            “Yes, Steve Steves, I am.”

“I’m assuming you have a deaf child?”

            “That’s a solid deduction Steve Steves.”

“Well Ma’am, by law in the State of Indiana, we are not required to put up that kind of sign.”

            “Really?”

“Yes Ma’am. Deaf Child, Blind Child and Children at Play. We’re not required to put those up. We get nervous mothers asking for Children at Play signs every week. If I gave a sign to every mom who wanted to let her kid play in the street, ha ha, I’d never get anything done, ha ha ha.”

            “So parents of deaf and blind children just want to let their kids play in the street too?”

“No Ma’am. I was just explaining why we don’t put up those kinds of signs.”                    

            “I’m assuming in Indiana it’s ok to run over deaf and blind children who didn’t see or hear  the car coming? Obviously they’re of less value as they can’t hear or see.”

“No Ma’am, now I didn’t say that. We Hoosiers respect our children.”

            “Just not deaf or blind ones, as it seems to be unimportant to keep those kids safe by alerting   drivers that my kid might not hear them coming.”

“Now Ma’am, there’s no need to get upset. There’s good reasoning behind this that proves these kinds of signs are unnecessary.”

            “Oh Steve, I’m not upset. We’re just discussing. Right? Now I’m pretty new to this state and I’ll be honest, I’m not a fan of some of the laws here but why don’t you tell me more about why signs protecting small children who cannot hear or see are unnecessary, because to a gal like me, that sounds a bit odd. ”

“Yes Ma’am. There have been studies that show drivers are immune to such signs and do not yield, thus the sign is of no use. Might I suggest you place something large and colorful on your sidewalk when your child is outside playing instead?”

            “Large and colorful?”

“Yes Ma’am, when our kids were young my wife and I used to pull out one of those neon turtles with the ‘children playing’ flag, to alert traffic.”

            “Ah yes, a neon turtle to protect my deaf son. Steve Steves, can I ask, do you have a deaf child?”

“No Ma’am.”

            “Do you have a blind child?”

“No Ma’am.”

            “Then you shouldn’t tell mothers to use a neon turtle to protect their deaf or blind children.”

“Again, Ma’am, I’m just trying to help.”

            “No Steve, I don’t feel like you are. I think you called to feel me out. You wanted to see if I was going to be a pain in your ass about this or if I was going to be easily cajoled by the suggestion of a neon turtle. Well Steve, as I mentioned before, I’m new in town. I’m a life-long teacher, an advocate for deaf kids and unfortunately for you, I’m coming from Philadelphia and my husband is from Turkey. Steve, I’ll be honest with you, we don’t fight like Hoosiers. We fight like Philly Turks and I’m assuming you had World Civ in school so you know how Turks fight.”

“Now Mrs. Özemet, there’s really no need to fight. There are options.”

            “Like what Steve?”

“Well, you can petition City Council with your request.”

            “Fantastic! Get us on the docket for the next meeting. The Turk and I will be there to petition. Should I bring my own expert testimony and research? Is the venue Power Point ready?”

“Um, I…I…I’d have to check.”

            “You do that Steve because I’m not going away.”

“Let me do some checking and get back to you Mrs. Özemet. Maybe there are other options I’m not aware of.”

            “Good thinking Steve Steves. If I don’t hear back in a few days, I’ll just swing by your office and we can chat in person.”

Three days later, Steve Steves called Tenacious Mom to inform her that her request had been passed through City Council without any need for her to be present. Was it fear of The Turk waging jihad? Was it fear of a Philly smack-down? We may never know, but she again fought the urge to morph into Smartass Mom and thanked the man with two first names for his assistance.

One month later, just when Tenacious Mom was about to visit Steve Steves’ office to “check” on things, City workers mounted not one, but two, Deaf Child Area signs on either side of her house. Though she still longed for a sign that read, “Yo, Slow Down Fool. Deaf Kid Up In Here,” she was pretty damn pleased with the ones she got.

The Moral Of Our Story: Men with two first names should never take on a tenacious mom and her Turkish husband.

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Thanks For The Coffee Klatch Paul Stanley

Toddlers on bench in gas masks during WWII

Unleash the balloons! Discharge the confetti cannons! It’s over. (No, not the US presidential race, we can only dream about that ending. We’re stuck in that crap-nado for at least six more months.) No, the case conference was yesterday and Nugget now officially has an IEP and is placed in a school for fall. He’s even been put on a bus route. (Though I doubt the chubster’s stump-like legs will be capable of mounting bus stairs and thus he will need a drop off, but I digress.) While the beginning of his formal education doesn’t look at all like I’d anticipated, we’ve got an education plan and the next step is happening.

We had great options but Nugget fell into the in-between and none were ideal right now, so he’ll be spending his first semester on the Island of Misfit Toys with other little buddies that need an extra push to get things going. (Side note- when we visited the Island, Nugget had a grand time laughing at a kid with enormous glasses and that kid pointed and laughed right back, because on the Island, it is perfectly acceptable for a kid with one ear and a hearing aid on his forehead and a kid with Coke-bottle glasses to mock each other. The Island is a level playing field. Socialization at it’s core.) He’ll have a full morning of social time and therapy, much like a Baby Betty Ford Clinic. Best of all, the teachers will meet Nugget in his zone, not all sign language, not all speech but a combo of both, just like Nugget.

In addition to his speech and language needs, they will also help him with his anxiety. (Again, much like a Baby Betty Ford Clinic – sans pharmaceuticals.) The plan is to bring that sassy little chunk out of his Mama-needin’ shell so he’ll become comfortable enough to entertain the masses with his sweet dance moves and vowel-based recreations of Flo Rida jams. (El-um u i ous : That’s ‘Welcome to My House’ as interpreted by the Nugget.) The kid is well on his way to comedic genius and while I’d love to save it all for my own entertainment pleasure, the world needs a good laugh right about now and Nugs is ready to lead the charge…as soon as he can get off his mama’s lap. (I’m assuming Jerry Seinfeld started on his mom’s lap as well. Right?)

While the decision is made, I still had my doubts. The what-if’s are massive in this Polly-the-Planner, Wilma-the-Worrier mind of mine. Sure, all parents worry about making a wrong choice – like will Timmy become an ax murderer because I sent him to a Waldorf school over a Montessori school? (Unlikely, but though he’ll be able to knit at age 3, he might never learn to sort beans properly.) In the realm of special needs parenting the worry is heightened because your kid is already behind and parents are often working against developmental time clocks, age deadlines, insurance restrictions and school district constraints. (Man, have I learned a lot this year!)

Just as I was getting ready to dosi-do into a second-guessing square dance over my morning coffee, I got a little gift from Paul Stanley that seemed to put things in perspective. Paul Stanley, yes Star Child from Kiss and a founding father of hair metal, has the same ear deformity Nugget does and even wears the same kind of hearing aid. Didn’t know Star Child was half-deaf with one ear did ya? (There is your useless trivia for today. You’re welcome.) That’s why he started the hair thing – to hide his ear. And I guess that also explains the whole volume thing too. Gene: Turn it up guys, Paul can’t hear a damn thing, he’s only got one ear! Paul Stanley never went public about his Microtia until recently and since then he’s been a huge supporter of tiny Microtians doing great things for kids all over. (And you thought he was just some sleazy, tight pants wearin’ rock star didn’t you? Nice, Judgy Judy)

Anyway, this morning an interview with Paul Stanley came across my inbox and my second-guessing ceased. In the article, the writer asked Stanley his secret to overcoming the huge obstacles placed before him as a kid. He replied, “You don’t take giant steps. You initially take baby steps appropriately. As you have small successes and small wins, it encourages you to go the next step.” Logical? Yes, but sometimes when wisdom is delivered by a hairy rock icon it sticks better. Thank you Star Child.

Nugget is doing just that. He started by signing single words and now he’s signing sentences. He used to be a miserable, grunting tyrant and now he uses sign language to recreate hilarious adventures from his day. (Explaining how he got an owie is usually Oscar worthy.) Signing has given him enough confidence to try verbal approximations and he just keeps building. It really doesn’t matter where he is in school because right now, he is taking baby steps at his pace and eventually those will lead to great success. In time, Nugget might just pick-up a guitar and forge a new sound that will take the world by storm. (Though in all honesty I look for him to be more R&B than Metal. Chubby guys are good at smooooooooth.) Take your time Nugget and keep going with those baby steps. We’ll get there. I have no doubt about it.

 

I Think My Spirit Guide is a Wrestling Quaker

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With the exception of a stint in a private school owned by the Turkish mafia (What? Mafia bosses care about education too.) and a year in public school, I’ve spent my entire teaching career in Quaker schools. If you’re not familiar with Quaker schools let me nutshell it for you. Quaker schools were created by the Religious Society of Friends (Codename: Quakers) to educate their young’uns, although now most students are not Quakers. These are groovy, progressive schools where equality is the norm, community service is part of the curriculum and you can’t help but get sucked into their hippie thinking. (Quakers are pretty badass for pacifists.)

After many years in various Quaker schools, the Quaker way is deeply rooted in my thinking and parts of it occasional spring forth from my cluttered brain in times of need. This week, one Quaker idea has really been poppin’ thanks to my one-eared, bum kidneyed, hard of hearing, apraxic, high-strung, Nugget’s latest journey and that’s the idea that “a way opens.” It started in the dairy section of Aldi. (Yes, I’m a value shopper. No shame in that.) I heard, “Relax, a way opens,” over and over in the voice of my former coworker Mr. Ross, a wrestling coach/hippie Quaker. (I’m guessing this means he’s my spirit guide. I’m not sure how that works but admitting I hear voices sounds like a cry for help so I’m going with spirit guide.)

Most likely, Mr. Ross became my spirit guide because he was the one who best explained the theory to me many years ago. “If there’s a rock in the stream, the water doesn’t try to break the rock. The water makes a new way around the rock. Thus, a way opens.” It was pretty Zen for a dude who spent most of his time in headlocks and half nelsons. Ultimately, it might not be the road you were planning to travel, but a road will open, in time.

Right now, I really need a way to open in the, choosing-a-school-for-the-One-Eared-Wonder arena. As of August he phases out of Early Intervention and moves on to big boy school, but due to summer break decisions must be made now. We have 3 choices: the ASL based deaf school, the speech based deaf school with no ASL or the all encompassing developmental preschool which I lovingly liken to the Island of Misfit Toys- everybody who needs a little extra help can find it there.

We tried the ASL deaf school earlier this year and even though signing is his first language, it was a di- freakin’-saster. (Here, in case you missed it.) Since his main issue now is developing speech I had grand plans for him to attend the speech-based deaf school but after demonstrating a flagrant disregard for his mother’s plans by throwing his placement evaluation like Pete Rose in a title game, I began to worry. After discussions with his developmental pediatrician, speech therapist and audiologist last week my grand plans began to crack. All three suggested that due to Nugget’s increasing anxiety issues, he might not be ready for a speech intensive school. Why ya gotta do me like this Nug? Mama had a plan.

With every professional suggesting a holding pattern, I knew what they were really saying…look how well he’s done with you this year… you should give him one more year…stay home with him, just one more year. Sure I nodded and claimed I’d give proper consideration, while my insides screamed “NOOOOOOOOOOOO!” Now I certainly love my Nug and I will agree this has been a great year for him developmentally, but regular viewers may recall my fear of financial ruin forcing me to take up pole dancing on cellulite night as a means of survival. That fear hasn’t diminished and I’m staying flexible just in case. Here in the real world Mama needs to bring in some dough and while I’d love to stay home (Ok, not really, 24/7 Nugget duty is hard and I’m old.) I really must get back to the workforce.

Going back to work not only means freedom from the threat of pole dancing, it also means wearing pants not intended for yoga. (While I enjoy my yoga pants, my pants have not been exposed to yoga in the past year and Mama desperately needs the stand-up-and-suck-it-in goodness that occurs with a waistband.) I long for commutes where my sports radio is not disturbed by constant demands for It’s Signing Time Music Time. (Yes, I’m butch like that but only during football season.) I want lunch without that little bastard Daniel Tiger and coffee that doesn’t have remnants of a toddler’s masticated bagel. All of that is at my fingertips if I just get this school thing right. See, I’ve already taken a teaching position for next school year. (Now you see my plan? Mommy goes to school, Number 1 is in school, Nugget starts school. Easy peasy…or not.) So the need for accurate Nugget placement is high.

Hopefully my Spirit Guide is right and soon, a way will open. In the past, through all our trials, (And there have been an inordinate amount, damn it) a way has always opened. It wasn’t always what I’d hoped for but it’s always worked out, eventually. (Though I may now have a compromised liver and nervous tick, everything has to resolve, eventually.) On an up note, somehow in this stress, I developed not an ulcer, but rather a wrestling Quaker spirit guide so it seems my body has learned to handle stress differently this year. Perhaps a way is opening…

wrestler (1)

 

Grab Your Cape One Eared Wonder, It Is Time.

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When Nugget was a few weeks old and his failure of the newborn hearing screening was confirmed (Like that was hard, I mean, the guy has one ear. Duh.) we were told “The Center will be in touch to register him. They can keep track of him from here out.” Now I assumed, as one does, that “The Center” was something akin to the Hall of Justice. Logically, I also assumed that since the One Eared Wonder was born with a genetic glitch, as is true of most members of the Justice League, X-Men, Avengers, etc., it would only be a matter of time before The Center sent his cape and tights and called him in for duty. We got that call this week but we’re still waiting on the cape and tights.

Early Monday morning Nugs and I were instructed to report to The Center for his “evaluation.” While they tried to convince me this “evaluation” was for school placement, I knew better. I’ve got forty plus years of Wonder Woman fandom under my belt. I know how these things work. I also know it’s imperative to keep things on the down low, so I played along with the school rouse.

I tried to explain the process to Nugget, but to him it all sounded a bit too much like school. Unfortunately for him, The Center also shares a campus with his old school and if you’re following along, you’ll recall that that whole deaf preschool thing did not set well with the little dude and at present, he’s a preschool drop-out. As soon as we neared the sprawling, gated campus, (Huh. See that, sprawling, gated campus, synonymous with superhero training grounds –ie the Xavier Institute from the X-Men. They can’t fool me. I know what’s really going on.) Nugget knew exactly where we were and the meltdown commenced.

From the backseat he was screaming, sobbing, and signing no, no, no, I go home over and over and over. (While this is not behavior befitting one quested with world salvation, I’m sure AquaMan behaved the same when his AquaMom took him that first time too.) I assured him that I was staying and it would be fun but he’s heard enough of my crap over this situation and was not buying it. So, as I’ve now grown accustomed to doing, I entered The Center with a screaming fat kid clinging to my torso like a hostile chimp.

I was a bit concerned when I was able to just open the door and walk in. I’d expected there to be a handprint recognition security system or a membership swipe card at the very least. Upon entry we were met with a team led by a small older woman (their version of Dr. Charles Xavier-obviously) and her team of attractive young people, likely hiding their own superpowers beneath career wear. We were ushered back to the ‘testing suite’ where the One Eared Wonder was wired up to headphones and the process began. (While I’d hoped for a segment where they strapped him to an upright table for endurance, strength and mind control testing while I looked on from a glass-enclosed balcony above, that didn’t happen. I’m assuming they wait until he’s successfully completed kindergarten for that phase.)

As the testing continued so did his hostility, even after he was introduced into a room of fellow-trainees. (AKA two other almost-three year olds.) The other trainees were a bit more independent and did not demand to remain on their mommy’s laps. Because of this bravery, I assumed they were undercover members of The Center being used as a control group. That assumption was dashed when the interpreters entered the room.

Three kids, not quite three-years old, all of whom only communicate in ASL, received a team of two older women who interpreted their every sign for the hearing evaluators (whose hidden talents must not include the ability to read chubby fingered toddler ASL) and the result was hilarious.

The quiet room was now filled with dramatic, rapid-fire, voice-overs of every single thought the toddlers expressed:

Can I get some water?

                        I spilled my water.

            I want more water.

                        Did somebody poop?

            I pooped.

                        She pooped.

                                    I go home now! (Nugget, of course)

            Where is my snack? Can I eat his? He’s not eating it. I want.

                                    I’m done with this! We go in car now! (Nugget, of course)

            I’m ready for nap.

                        I don’t like this snack. Got something else?

            Are we done?

                        Where is my dad? My dad has snacks.

                                    I don’t want snack. GO HOME NOW! (At least he was consistent)

Upon our departure, I was given another form to complete regarding home behaviors and skills. While there was a question asking – does you child easily lift extremely heavy objects (Why yes, last week Nugget held my car up during an oil change.) I was taken aback when there were no questions like, does your child spontaneously take flight, walk through walls and/or appear out of nowhere. After completing the form I added a note suggesting those be added for the next printing.

Now we wait. Our next meeting is scheduled for May and I’m hoping that’s when he gets his cape and tights but if it’s based on Monday’s performance, we might be stuck with a bath towel and pajama bottoms for a while longer.

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