Mama Don’t Need No Tribe

high priestess

Everyone has those words or phrases that rub them wrong way like the ever-despised word “moist.” Personally, that one isn’t a trigger for me because when someone says “moist” my mind automatically follows that with “cake.”

It’s not gross words that rile me up, but more phrases that might be found in a middle management training manual, like “team building.” Or, “I just want to circle back to that.” Unless we’re out riding our bikes to the Dairy Queen in 6th grade or rounding up our wagon train to conquer the Wild West, I see no need for you to “circle back,” just call me.

But the phrase that has really been eating at me lately is “my tribe.” As an incredibly politically incorrect human, it’s probably shocking to most that I might be a little uncomfortable with that term. I’m especially uncomfortable when “my tribe” is used by a bunch of white chicks in reference to likeminded friends when they’re out grabbing pumpkin spice lattes. Even we offensive broads have limits.

This whole tribe thing has been stuck in my brain lately though and I’ve been giving it way more thought than necessary. It started last week when I was having a difficult time with Nugget which resulted in a true special needs mom meltdown. That’s when it was suggested that the answer to my problems was that I needed to find “my tribe.”

At the risk of sounding like an 80’s Rob Lowe character, I’ve always been a loner. People are fine and all, and I do have a pocket of friends I consider to be sisters and gay brothers, plus a huge web of people beyond that, but I’m an arms-length kind of gal. I don’t do tribal friendship. (Perhaps because I don’t do pumpkin spice lattes?) However, in my pocket of sisters and gay brothers and even in my web beyond, I don’t have any close special needs parent connections so my journey with Nugget has been a lonely road.

When you have a kid that carries a genetic label few have ever heard of and even fewer can spell (Branchio-oto-renal syndrome doesn’t usually pop up in spell check), and has a whole host of diagnoses that follow him around, it’s easy to feel like Tom Hanks in Castaway with no one to share your woes but Wilson the washed ashore volleyball. (Full Disclosure: sometimes when the Turk and I do talk about Nugget’s issues, the big English words throw him off and he basically turns into Wilson too. I love him but I know his limits.) But a tribe? I don’t know about that kind of hippie madness.

Last year Nugget finally started to catch up developmentally. About mid December, that dude started busting through every limitation that had been weighing him down. He gained years in months and it was exactly what my mom heart needed to believe things were finally going in the right direction.

And then this year he got stuck in a mudbog. Since school started this year Nugget has stagnated. No growth. No change. When I persist, “Let’s work on letters.” I’m met with, “Nope. Can’t do dat.”

If I try, “Let’s write together.”

I get, “No. I can’t.”

It’s killing my old teacher heart.

In addition to his genetic anomalies, Nugget also drew the long straw on a healthy dose of stubborn Turk genes too. Many a teacher and medical professional have said, “Wow, he really only does what he wants to do.”

To which I can only respond, “It seems you’ve not met his father.” But recently those Turk genes are about to do me in and have me worried of they are a sign of more than just obstinace.

The driving force behind my recent meltdown, the one that spurred the whole tribe thing, has been Nugget’s hatred of everything resulting in hissy fits that would make Naomi Campbell proud. There are tears, flailing, occasional profanity and relentless arguing and that’s just on Nugget’s side. I’m about a step from postal.

Simply put, Nugget doesn’t want to do anything.

Go to school – hissy fit.

Go to anything for his brother– hissy fit.

Grandma shows up – hissy fit.

Grandma leaves – hissy fit.

And the list goes on and on. After one particularly rough day when the hissy fit was so bad at school he had to go home, I immediately spiraled into a pit of mom guilt so deep even mid-day, high-dollar chocolate couldn’t bring me out.

It’s been a rough year with a new and highly incompetent teacher (It’s not brain surgery girl, it’s special ed preschool.) and I’m beginning to think special ed is holding him back. I spiraled from, maybe we should pull him from that school, to maybe if I weren’t so busy taking care of other people’s kids all day mine wouldn’t be in this mess.

I talked it out at work, (A major advantage to dealing with special ed school issues for you own kid is working in a special ed school) until I finally relented and called Wilson – I mean, the Turk. I’m not sure why I was moved to call him but I assumed that women with tribes do that kind of thing.

“I don’t know, I just think maybe if I weren’t working all the time I could get Nugget going again and put an end to this crap.” I whimpered on the verge of tears.

“No.” The Turk replied.

“What?”

“Honey, calm down. He is asshole. Even if you home all the time, he still be asshole.”

“Are you joking?” Sometimes it’s hard to tell with that accent.

“No. Don’t you remember Number 1 at this age? He was asshole too. He is not asshole now so they get over it. You don’t need to quit.”

The Turk was right. There was never a time when I understood more fully why animals eat their young than when our oldest was four. He was indeed a raging asshole but fortunately, he grew out of it.

“When I kid, I hate school too. My father get so mad because I never learn letters or write. I not do it because I thought it was stupid. Maybe he’s the same. Relax. We get him there.”

And with that, my meltdown ended. I didn’t need some ridiculous tribe; I only needed Wilson to finally talk back to me on my desert island.

Unfortunately, we are only 3.5 months into this grand age of 4 and with some wine and more high-dollar midday chocolate, I might make it through. Better than that though, I realized a gal doesn’t need a tribe as long as she has a straight shooting Turk.

 

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Mother Tongue…Ewwww

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The other day someone used the term “mother tongue” in response to languages in our house. That term grosses me out. I am a middle schooler trapped in an old lady body so combining the words mother and tongue could not be any more gross. But after I threw-up in my mouth at the Oedipal imagery, I got to thinking about it. When it comes to language in our house, we are both amazing and a hot mess.

Language is something I’ve learned to both love and despise. I love it for its ability to express the mirage of thoughts hurling through my head, but it also sucks because for us, language is the root of many problems.

For example, I can unequivocally say that every major argument the Turk and I’ve had in our years of marriage has come down to language and something getting lost in translation. Even though we’ve been at this for over a decade and we both speak each other’s languages we still have major miscommunications and now our kids are in on the magic.

 -quiet side whisper- “Mom, what the heck is Baba trying to say?”

“No clue kids, just nod. We’ll figure it out later.”

Then there are the languages themselves. Turkish being blunt and including no sugar coating and English being one where we might sugar coat too much. In Turkish a person is never curvy or plump. A person is fat. Just fat. That doesn’t always flow so well with sensitive English speakers.

“Why I add extra words when I don’t need? She is fat. It is true. I tell her. What is wrong with that?”

And lets not disregard issues we have with preconceived notions we face when speaking our second languages. In Turkish conversations, people think I comprehend faster than I do so they hit me with rapid-fire Turkish while I’m at “hi, how ya doin’.” In English, people hear the Turk’s accent and assume he just started learning English last week rather than 20 years ago, so they assume he’s stupid. (They usually see their misjudgment later when he hits them with a zinger.)

Number 1 Son never had an issue bouncing between languages rather than choosing a mother tongue, until he was old enough to choose. His choice of English over Turkish upset many family members while elating others, sticking his father and I in a quagmire.

Then there is Nugget. For his whole life of almost 4 years, language has been his Achilles heel. As a kid with Childhood Apraxia of Speech who couldn’t get any words to form or any sound to come out until very recently, he was no fan of spoken English. As a Hard of Hearing dude with one ear, he’s doesn’t always catch spoken language to begin with and he’s often dependent on ASL when his lone ear lets him down. However, he’s painfully aware that only a handful of people besides Mom can sign with him so if he can’t sign, can’t speak, what’s a guy to do?

Now, after a year full of daily speech therapy he’s gone from a kid with CAS to a kid with an adorable lisp and a couple other speech impediments (And mastered a find grasp of profanity because even with one ear that kid can hear every damn foul word his mother drops a mile away.) He’s also added more signs and keeps up with his ASL. Recently, spurred by his love of a fabulously flamboyant, Liberace-esque Turkish singer, he’s started picking up Turkish. So what’s his mother tongue? Who knows but 3 languages by 4 is damn impressive.

No one I knew as a kid spoke a second language but  I had great aspirations, so I ordered both French and Spanish dictionaries from the bargain section of the Weekly Reader book order. I soon learned that one does not learn a language by reading the dictionary. I tried Spanish class in high school but called it a day after, “Me llamo Margie, y tu?” I did pick up enough Spanish later to get me into trouble in Mexico, but basically I top out at Dora the Explorer level.

This week Nugget had a birthday party with some Developmental PreK buds at a trampoline park. It was his first big party and he was psyched until he realized how loud the park was and thus turned off what hearing he has (as he does in noisy situations). As I was signing to him we were surprised to see a bunch of other people doing the same. Nugget was elated and signed, Look Mom, they sign too! A group from the local Deaf school was there on a field trip and many took time out to chat with us. It was great for Nugget to share a mother tongue and great for me to hone my ASL skills.

After the party we stopped off at McDonalds (Yes, I do that occasionally. I’m not proud but it happens.) and much to my surprise, we sat next to a woman speaking Turkish to her young son. As we chatted she told me she was here for her husband’s work and didn’t speak any English. She was desperate for someone to speak Turkish with, besides her husband. She was shocked and elated to have found that at McDonalds. I was transported ten years back when I was a lonely wife newly landed in a foreign country, struggling with the language and longing for someone, anyone, to speak English with so I certainly understood. It rocks when life gives you an opportunity to reciprocate. We talked forever before exchanging numbers and she even complimented me on my Turkish (Which made me beam because I generally sound like a stammering moron in Turkish, but thanks to my early years of motherhood in Turkey I do rock the mom-talk quite well.)

So maybe we have no familial mother tongue and maybe my relationship with language has become a bit hostile in recent history, but as I settled in for my evening wine/decompression with The Turk that evening, I was damn proud of myself for having flexed my muscles in 3 languages in a matter of hours. Not bad for a girl who didn’t make it through 9th grade Spanish. Next up, perhaps we’ll all learn Icelandic…

 

 

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.

Hells Yeah, It’s Thanksgiving Gurl!

turkey-riding

The time is upon us again and my heart, with her arteries prepared to clog within days, is all a twitter. Why? Because, my friends, it is nearly Thanksgiving the most wonderful time of the year.

I’ve always had a solid love of Thanksgiving (not really that odd for a fat kid) and that love has only grown stronger with age. During our years living in Turkey, I deemed November the “Month of Which We Do Not Speak” and would refer to the month only by it’s Turkish name, Kasim, so I would not be reminded of what I’d lost. (On more than one occasion post-repatriation, I have legitimately been asked how the Turks celebrate Thanksgiving so I feel like I should issue a little reminder that while there is a Thanksgiving turkey, there is no Thanksgiving in Turkey. I’ll just leave that there. No need to admit if you had to think about it. I judge silently.)

While many people get the tingles at the mere mention of Christmas, I do not. I’m not a fan of the Holly Jolly. Christmas is hectic and expensive. There is always high drama and high expectations and quite frankly, ain’t nobody got time for that. The Turkish version of Christmas happens on December 31st and includes a skinny dude with a ‘stache called Baba Noel delivering, one – just one- gift to ring in the new year. None of this 3-month lead up, no stores blaring Christmas music from the first of October and they give you a whole extra prep week. I’ve lobbied for this approach in America with no takers. (America, considering our current plague of obesity, would it be so bad to have a chain-smoking, trim Santa as a role model?)

No, Thanksgiving is my jam. Last year Thanksgiving came after a dismal autumn that included Nugget’s kidney reconstruction, copious visits to get his hearing aid fitted, his Apraxia diagnosis and our introduction to learning ASL. Mama was playing stay-at-home mom so funds were tight and I was weighing my options for pole-dancing as a means to provide Christmas. It was not our finest November and even Thanksgiving couldn’t bring me around.

But this year…this family is in fighting form! Mama’s back to work in a job that does not include dancing or poles, (Yes society, your collective sigh of relief is audible.) Nugget’s kidney is pumping like new. And though he has a love/hate relationship with it, his hearing aid has been a game changer for his speech and while he still uses ASL to communicate on the reg, he also never shuts up. (Though I can only decipher about 50%, in his mind he’s fluent and has gone so far as to begin adding in some Turkish which isn’t all that helpful but amazing all the same.) This year Thanksgiving, it is GAME ON.

I made my menu last Friday and had 90% of my food shopping done by Saturday morning (and booze…of course I already bought the booze.) On Sunday, I began the great turkey thaw of ’16 so I can brine that bird on Tuesday. Monday I sent the Turk (who took the week off to use up some vacation time with the intention of winterizing our world, but instead became my Girl Friday…or I guess that would be my Turk Friday.) all over the city in search of missing ingredients. Before you feel too bad for the Turk, know that while he’s relatively new to this whole Thanksgiving thing, he is a Black Friday junkie and he spent much of Sunday laying out his own plan of attack for the wee hours of Friday morning.

Tuesday as I lovingly rub Lonna, (That’s this year’s bird. I find I put in more effort if I name them. Don’t judge me.) and whisper sweet nothings into that little slot where her head used to be, I will cover her in brine and await the glory of what she will become. Tuesday evening I will return home after a hard day at school, elated to begin Thanksgiving break. As I turn Lonna in her brine, in a celebratory gesture, I’ll grab her by the wings and turn my kitchen into a dance floor as Lonna and I execute a quality Argentinian Tango. (I get all my moves from Dancing With the Stars. So does Nugget.)

Wednesday is what I like to call the pregame. Pies, cake, relishes, rolls and anything else I can chop, dice or shred. Don’t expect meals, children, Mama’s got cooking to do. Number One Son will be whipping up piecrusts while Nugget proofs the yeast…ok more like Number One will whine about going to play outside while Nugget rubs roasted pumpkin into the cat’s fur.

And Thursday when my alarm goes off at it’s usual ungodly hour I will rise without once even considering snooze, pull on my fatigues,(or yoga pants, whichever is clean) paint my face with camo (or moisturizer as camo make-up makes my glasses slide down my nose) and take my place at the kitchen counter, prepared for greatness.

It’s been a crap year. 2016 has held maximum suckage. We’ve lost greats, lived on edge for an entire year, been bombarded with stupidity on so, so many fronts, face great uncertainty about our future and elected a moron. But even amid all that, my family has so much to be thankful for and what better way to celebrate than by stuffing ourselves into obesity with high quality edibles made with love by a surly mother. (I’m pretty sure that’s how the first Thanksgiving got started too.)

So do as I’ve been doing since about November 9th, turn off the television (except for football or Dancing With The Stars) unplug from the stress of social media (love you all but the break has done me good) explore new wines, play obscene amounts of Uno with the kids and enjoy this fine, fine holiday.

HAPPY THANKSGIVING From the Turks!!!!

When Bedtime Stories Go Bad…A Cautionary Tale

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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.

 

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.

If You Need Me, I’ll Be In My Iron Lung

CDC Iron Lung “You should’ve come in sooner.” This is what my doctor said as I wheezed into her stethoscope. “You really need to work on your self-care.” I tried to argue my case to the petite little flower I call my primary care physician, explaining that due to my possession of the same metabolism as those in the sloth family, I eat pretty healthy and do exercise. (For reals, it’s bad. One lapse and I could totally be the next contestant on My 600 Pound Life.) I thought I was doing pretty good at self-care.

“That’s not the kind of self-care I’m talking about.” She corrected. “If this was one of your kids with these symptoms you would’ve had them in here last week. Why did you wait so long for yourself?” Ah yes, petite little flower, you know me well.

I’ve never been great at putting my needs before those of my family but once the crap hit the fan with Nugget’s health last summer, I definitely lost any grip I might have on self-care. (Though I really think it should be called something else. Self-care sounds kind of dirty and it makes me think of weird things like Gwyneth Paltrow’s promotion of vagina steaming.) I blame my deeply-rooted lapsed Catholicism for my self-inflicted martyrdom. It’s one thing to believe your kids need you, but it’s another when you actually do serve as your kid’s primary language interpreter thus allowing him to communicate with the rest of the world in addition to being his advocate and protector. Between the whole deaf thing, the apraxia of speech and Nugget’s bum kidney, my mama bear genes have been in hyper-drive for about three years so it’s no surprise the crap had to hit the fan eventually.

I’m well aware of the adage; “You can’t take care of them if you don’t take care of you.” But let’s be honest, anyone who has been on the frontlines of a full familial bout of the stomach flu knows that is just crap. Moms don’t get to be sick and that’s that…until mom loses something important like a limb, heart function or the ability to breathe. That’s what happened to me this week and landed me in the ER for one of the very few times in my life.

I’ve had asthma for over 20 years and it’s usually pretty maintained but every few years I need to wheel out the old iron lung and take up residency for a bit. It’s been about four years since I’ve been hit hard so I was feeling cocky. A few weeks ago Wheezy started to rear her ugly head and just kept getting worse so after hitting the inhaler like a crack-pipe (Is that a thing still or is crack whack now and I’m showing my age?) for a week, I decided I might need to see the doctor. However, when I did, my doctor determined it wasn’t my asthma but instead it was my heart.

When your father drops dead of a heart issue at 37, every doctor you see for the rest of your life will panic at the first sign of chest pains. I’m aware of this but this time around the mere suggestion of my heart failing me sent me into a tailspin. I mean I was weak and fatigued, had massive chest pains on the left side, was short of breath and at my age, Web MD as well as my real MD said it could go either way – asthma or heart failure. It was enough to send this old girl reeling. What if I really was like my dad this time? Who would take care of my babies? Oh dear God don’t make me leave them with the Turk!

My doctor ran a couple tests and sent me for more and while I awaited results, I began mentally writing my will, lamenting the fact I have no quality possessions to bequeath and getting pissed that Brexit just tanked any investments I might have left my beloveds. (Stupid stock market wussies.) Being a planner, I determined I wanted Elvis Costello played at my funeral and decided I should go shopping as the Turk really couldn’t be trusted to pick out a stylish yet flattering ensemble for my internment. Just as I was about to start Googling a replacement wife for the Turk (I love that man but God knows he cannot handle things on his own.) things took a turn and this very stubborn woman determined it might be time for an ER run.

Fortunately, my potential demise coincided with the same time grandma got off work so I didn’t have to schlep my offspring with me to the ER but I did make the Turk go – just in case I died behind the wheel. I’d hate to be responsible for a 40 car pile-up on my way to meet St. Peter.

20 minutes and a flurry of activity later, I was getting a rush of IV roids and a breathing treatment that left me feeling like what I imagine a heroine junkie feels like after a fix. I had been so short of air for so many days; I forgot the simple euphoria of oxygen. Three hours later they determined it wasn’t my heart, “just asthma” – though as anyone with asthma will tell you, saying “just asthma” is moronic as it’s like saying, “oh, it wasn’t anything big, just an inability to perform a task essential to sustaining life.”

I was home for bedtime with an armload of drugs and strict instructions to take it easy. So I’ve spent the last two days lounging about (as much as one can with a Nugget and family of Turks to care for), sucking on a breathing machine like it’s a hash pipe and popping ‘roids while warning my family, “Keep Mommy calm or she’ll get roid-rage!” I’ve also promised my family I would attend to my health before the Grim Reaper stops off for a cocktail again. But in the meantime, if you see a good price for an Iron Lung on Amazon, let me know. It looks like I might be due for an upgrade.

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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.”

 

 

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.