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.

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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!

 

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.”

 

 

Pardon My Dance Break…

dancing boys

Like most discerning television enthusiasts just shy of age 3, Nugget has sophisticated viewing tastes. He loves the hard-hitting facts exposed in Sid the Science Kid, the fast-paced adrenaline rush of Paw Patrol and the gritty work-place drama of The Odd Squad. While he’d love to be an avid binge-watcher, he’s only allowed that luxury in the presence of phlegm or vomit. (his or mine). After a hard day on the swings, nothing takes the edge off like kicking back with a juice box in one hand and the TV remote in the other.

While his television viewing is generally age appropriate, (with the exception of his unexplainable love of The Goldbergs which I fear is due to seeing his own Smother in the adoringly oppressive Beverly) there is one show that we just can’t keep him away from and due to the scantily clad nature of the ladies, the age appropriateness is questionable. My Nugget is currently obsessed with Dancing With The Stars and while he’s danced with fandom in recent seasons, this time around he is obsessed, even requesting a Dancing With The Stars themed birthday party.

Every morning upon waking, he signs – Dancing With The Stars tonight? If my answer is yes, he’s elated. If it’s no he demands a quick fix from YouTube so he can carry on with his day. This coming week’s two-night finale is likely to blow his tiny mind. (Back to back Dancing? Madness!) An odd obsession for a toddler boy or is he merely emulating his adoringly oppressive mother’s interests much like his love of Wonder Woman and the musical stylings of Flo Rida? Or is this the first sign that finally, after losing hope with Number One Son following 8 years of less than stellar art projects and school performances, that my Nugget may have gotten my artsy farty gene? A mama can only hope but I venture to guess his current obsession stems from something far deeper.

See, Nugget is Team Nyle all the way and waits in anticipation for any glimpse of his dancing hero. For those of you, (unlike Nugget and by extension now, even the Turk) who aren’t DWTS fans, Nyle DiMarco is a profoundly deaf actor and model (and fine male specimen) that was the recent winner of America’s Next Top Model. (No, Nugget is not a fan of ANTM, nor am I. Tyra, love ya girl but that show is ridiculous.) Winning Top Model and being deaf gave him a direct path to the token “disabled star” slot on the latest season of Dancing With The Stars.

As with most television programing, this show also has a formula that relies on stereotypes and the token disability slot is part of that, as is the token geriatric slot, the old jock slot, the rehabilitated child star slot, the washed-up musician slot and the hottie-past-her-prime slot. But much to the surprise of both the DWTS producers and its fan base, (primarily old broads and their bored husbands (oh, and Nugget too)) this year’s token disabled star quickly proved that he wasn’t disabled at all.

In case you, unlike myself, have not spent the past few years pouring over audiograms and learning about the four levels of hearing loss, being Profoundly Deaf means you hear nothing and even aided you still hear nothing. That means that when this man is dancing, he is dancing to complete silence. (Suck on that Baryshnikov.) And in case you are not watching this season, the “disabled” man who dances to silence has been absolutely amazing, receiving top scores and far surpassing the rest for the competition for the entire season. But better than that, he’s used his time in the spotlight to push his political agenda, one that happens to be mine- bilingual (ASL and speech) language acquisition for all deaf and hard of hearing children. (Click here, in case you missed my high horse tirade on the matter and want to better understand why this is even a thing.)

From political appearances to forming the Nyle DiMarco Foundation, this man has made huge strides in the push for bilingual education for all deaf kids all in the midst of rehearsing a cha-cha and polishing his pasa doble. In addition to this activism that warms the hearts of parents like me, what’s much more important is his role modeling. My Nugget is obsessed with Dancing With The Stars because when he is watching he sees a guy that talks with his hands just like he does. He sees a guy that learns with his eyes, just like Nugget does and he sees a guy that keeps it classy in a world that is growing increasingly trashy. (Just like Nugget damn well better do when he’s a grown man or his mama is going to take care of that.)

Something tells me that when the producers filled the token disabled contestant slot with Nyle DiMarco, they had no idea that he would prove again and again that being deaf is not a disability but rather, a different approach. They also had no idea that he would bring with him not only the entire Deaf community, but the parents of deaf and hard of hearing kids, advocates, supporters, educators and anyone who works with these kids, one little chubby toddler in Indiana and tons of other kids who see themselves in this guy and millions of viewers who are shocked to have their preconceived notions of the deaf obliterated by dance.

It’s wonderful to see someone using this ridiculous platform that is Dancing With The Stars for good instead of trying to reignite a flailing career. Good on you Nyle DiMarco. This family will be watching you in the finals next week. (Not like we have any other choice…Nugget rules.) You’ve certainly got our votes but I am hopeful that this love affair will fade before I have to come up with a Dancing With The Stars themed birthday cake in July. I already have all those football decorations…

dancing girl

 

 

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

shaman

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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Cue The Balloons, It’s Rare Disease Day!

February 29, 2016 is Rare Disease Day. Since we only got Nugget’s official diagnosis last August, this is our first. I’m guessing that for those of us who have or parent rare diseases this is a day to whoop it up right? We blow up balloons, whip up a genetic defect cake and celebrate being one in 50,000? Right? No? Well, like I said, this is my first Rare Disease Day so if I bring the wrong hors d’oeuvres, the Rare Disease peeps will cut me some slack.

Ok, just in case you do some Googling and blow my story, here’s the truth. In addition to the party, Rare Disease Day is actually for raising awareness about rare diseases to lawmakers, healthcare professionals, scientists and to the general public. It takes place the last day of February every year and started in Europe (Good on you for being proactive Europe) about 8 years ago and has been gaining steam worldwide ever since.

Personally, I’m down with all this because if you have a kid who’s illness is listed way in the back of the diagnosis manual, rather than on page 5, it’s tough to get what you need. Countless times I’ve reeled off Nugget’s handful of diagnoses to to medical professionals only to be met with blank stares, or “Huh. I’ll have to look that up.” Reassuring right? Sometimes as I’m explaining the syndrome or giving details of things like missing ear canals and jacked-up kidneys I physically work to suppress my urge to proclaim, “Um, you know I’m a C student who went to college for art, right? But I seem to know a lot more of these big, important, sciencey words than you. Doesn’t that freak you out?”

So here’s your rare disease science lesson for the day:

  • A rare disease is any disease that affects more than 1 in 1500.
  • 80% of rare diseases are genetic in nature and 50% of rare diseases effect children (Which totally sucks)
  • There are over 6000 diseases considered rare and those are difficult to track because symptoms and effects vary greatly from patient to patient.
  • There are seldom cures for rare diseases

Here are the odds on Nugget’s combo:

  • He’s got Microtia Atresia, which weighs in at 1 in 12,000 odds. (rare)
  • Due to the Microtia he’s got Unilateral Hearing Loss which has odds of only 1 in 1000 (not rare)
  • His form of kidney disease has odds of 1 in 1500 though add to that his birth defect and it’s higher. (rare)
  • He’s got Childhood Apraxia of Speech, which has odds of 1 in 1000 (also not rare)
  • But when you combine all of his little bits and pieces together to get his overarching diagnosis of Bracciotorenal Syndrome, he’s 1 in 50,000. WhooHoo! Go Nug Go!!! Time to draw Mama some lotto numbers!

Whew. That was lot of big words and math for today and not nearly enough smart ass comments and fart jokes. Sorry about that. I’ll do better later this week.

Sure it sucks dealing with a rare disease. It’s stressful and difficult but here’s how I look at it, I have a little fat guy that is happy and hilarious and it’s looking like he’s smarter than his father and I both. He’s tougher at 2.5 than most grown men from all he’s gone through and because of him I’ve learned a lot of big medical words, everything about medical billing and insurance, American Sign Language, how to adjust a hearing aid, and how to be one hell of an educational advocate.

Rare disease or not, our little one eared wonder is amazing so in honor of Rare Disease Day today, we are going to celebrate. We’re going to whip up a genetic defect cake, turn some healthcare grade latex gloves into party hats and bust a move to the musical stylings of Rachel for Signing Times. I could say he’s one of a kind, but I have actual, genetically tested proof that my Nugget is one in 50,000. That’s pretty freakin’ cool.

 

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Transitions Aren’t Really My Bag

For the past weeks I’ve been singing David Bowie’s “Changes” in my head 24/7. No, it’s not just my way of mourning his departure, you see, my brain has always housed a revolving, anxiety appropriate soundtrack, lucky me. (You regulars might recall my Tom Petty phase following Nugget’s kidney surgery – if not, here – go read it and get yourself a few new ear worms.) Anyway, in anticipation of a big meeting this week, “Cha-cha-cha changes,” has been on auto-replay because we’re in for some changes at our house and I’m not ready.

This week we have our Early Intervention Transition meeting which is the first step in the process of moving Nugget’s developmental care from Early Intervention over to the school district when he reaches the big 0-3 in July. After these past months of Nugget coddling, the thought of this transition is enough to throw this Nervous Nelly into a tizzy. Since 3 is clearly the portal to manhood, his team of wonder women will no longer work with him in the comfort of our home, but rather come August, my little chubster is going to school.

While I’m incredibly grateful to live in a place with awesome Early Intervention services that have been in place since the one-eared wonder came home from the hospital it’s all happening too fast. My baby is about to hit the hard streets of preschool, complete with schoolyard fights and smoking under the jungle gym and chances are solid that my kid is the one with the lighter. (re-the fights, I’ve seen him in action and I’d put my money on him in any schoolyard cage match.) In just a few, short months, my little fat man will be taking the bus to his school every morning just like his brother. My Nugget is going to walk right up the steps and get on that bus (Ok, due to his inheritance of his mother’s tree stump legs he might need a little help with the stairs for a while but you get the gist) he’ll be a big kid. This isn’t supposed to happen until he’s at least 5! I need those 2 years to prepare my Pinterest-inspired, first day of school photo shoot damn it!

In preparation for all of this, we’ve been making the rounds checking out our school options and let me tell you, it’s a lot to take in. When I had my girlhood dreams about motherhood, (Ok I never really did that. I was more of a career -minded gal.) I never gave much thought to how one goes about choosing between deaf schools or developmental preschools. With Number One Son we debated between Montessori or Reggio Emilia methods and I was sure that if we chose wrong he’d be traumatized. Now, with Nugget, there is a pretty solid chance that if we choose wrong we really do risk traumatizing him.

Fortunately we live in a city that has two deaf schools, one that focuses on speech and one that focuses on ASL. Because he has partial hearing but no speech, both are options for us. ASL is currently his first language so that’s a solid choice but he’s showing signs that speech is coming (He currently speaks in vowels – “Ooooo,” sometimes he means no, sometimes go, sometimes it’s just oh. Thanks universe, because translating what the Turk means isn’t hard enough.) so that opens up options in the verbal deaf school too. Calgone, take me away.

We’re also preparing to do the IEP. Now for those of you not familiar with IEPs they are a big deal. This is his Individualized Education Plan that should guarantee him what he needs to succeed in a classroom such as an FM system so he can hear better with his hearing aid. Being a teacher, I’m well versed in the IEP biz but it’s a whole different ballgame when it’s your kid. I’m tasked with figuring out what will make my son academically successful when he’s still in diapers. Sweet Jesus give me strength.

And then of course, it all comes down to a negotiation between the school district and us as to what they think he needs versus what we think he needs and as is always the case, money is at the heart of that discussion because they are footing the bill. Suffice it to say, it’s all a bit stressful but we’ve been making decisions that will effect this kid’s entire life for a while now, so what the hell.

Tomorrow, nine representatives and involved parties will descend upon my home to start the negotiations. The Turk is so confused by the whole process he keeps saying, “What if you weren’t a teacher? How would I understand anything? Worse, what if I had to do this alone? “ (Finally, the man sees me for more than just my bodacious bod.) I’ve done my research and for now, I know what I want for my Nugget and I’ve no intention of stopping until I get exactly that. Watch out Hoosiers, I’m ‘bout to get all Philly up in here. “Yo. Yous betta be ready.” Special needs parenting is definitely not for the weak of heart.

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Oh God, I Think I’m Turning Into Andy Rooney…

The inter-web is becoming a cesspool of stupidity and I think it’s time we break up. In the past months, I’ve doubted our relationship often. I find the inter-web controlling and incredibly annoying. Using that criteria, if it were a man he’d have been ditched long ago. If my addiction to the local mom’s buy/sell/trade group and Pinterest (How did I ever make dinner before? No really, how?) were not so strong, I’d unplug and never look back. But alas, I just can’t say goodbye. Ours is definitely a dysfunctional relationship.

In the past few months the inter-web has served me well with my Nugget struggles. Out there in the ether that is the web, I have met amazing parents who have walked my path and told me what to expect after surgery, what brand of hearing aid is best and when to stop listening to doctors and trust my gut. Likewise I’ve been able to offer big cyber hugs to anxious moms with babies awaiting kidney surgery and reassurance to distraught parents who were just handed their own Microtian. In that vein it’s really amazing.

But that, dear reader, is such a small bit of positivity in a growing area of UGH. When did we start using the internet as the main vehicle for bitching and whining? People of the inter-web can find something to complain about in even the most mundane and innocent posting. Post a photo of a puppy with a kid and you’ll quickly be schooled on dog cruelty or child endangerment. Post a photo of food and you’ll hear about unhealthy choices or starving children suffering while you gorge. No matter what you photo you post, you are bound to piss someone off and they will absolutely need to tell you about it. UGH! (I seldom post photos because I’m offensive enough with the written word.)

Then there’s the fake news that really riles up old people and the uber religious who are looking to be offended. Last week a few elderly Facebookers posted about U.S. public schools forcing kids to say Muslim prayers and each poster was adamant this was true. Oh reeeeeeally. Having recently worked in public schools and having a child in public school I ask, where is your evidence old people? ‘Cause I ain’t seen nuthin. Furthermore, I never even saw that when I taught in Turkey – a Muslim nation. Hmmmmmmmmmm…

Next up there was a post, by the same crew of old people, that “Obama is pulling Fixer-Upper off the air because the hosts share their Christianity.” Fo real old people? Tell me you don’t actually believe that the President of the U.S.of A. sits around watching HGTV looking for the rare prayer? (PS – I think it’s been sufficiently demonstrated repeatedly everywhere but on FoxNews that he’s a Christian too…but what evs.) If Barry O is watching Fixer-Upper, I think he’d be far more concerned with the fact that there is always an unexpected expense at the midpoint of the show which the buyers ALWAYS agree to. Come on now. Who believes this? (I’m not a fan. It’s the Turk. He’s a HGTV junkie. I’m only a collateral viewer.)

All of this brings us to the current war on Christmas. (Note it old people, it’s not real.) My Jewish friends and Muslim family members are way better at celebrating Christmas than I, a life-long lapsed Catholic. The only war on Christmas I’ve seen is the war on stores opening for Christmas shopping on Thanksgiving and premature hall decking. Both of those are wars I can get behind. Please stop posting memes that say “I’m going to be offensive and say Merry Christmas this year. Are you?” Nobody cares. Even my mother-in-law who cannot speak a word of English and thinks Christmas is December 31st, says Merry Christmas. I’ve got Jewish friends who send me Christmas cards. This is all ridiculous. If you want to say something offensive, call me. I can teach you how to be offensive in 2 languages. You’re welcome.

Oh, and as for this red Starbuck’s cups crap? Shut the hell up. It’s stupid. Amen.

Ultimately the web is a bunch of neighborhoods and if you know the neighborhood, you know what to expect there. If you want to avoid riff-raff, (I’m looking at you Facebook,) just stay in your neighborhood where the worst you’ll have to deal with is the nosy neighbor. (PS- I’ve recently realized in our real-life neighborhood I’m the nosy neighbor. I’m just a step away from throwing my hair up in curlers and donning a fuzzy robe when I spy out my kitchen window over a cup of coffee. I need a job.)

A few weeks ago the Nugget came home from Grandma’s with a new toy, a Chuck Norris action figure circa 1983. Though his karate chops are slower and his leg no longer has the rubber band for a kung-fu kick, he’s found a place as protector in our home. He sits by the front door at night, travels to work in the Turk’s briefcase occasionally and even made an unsuspecting trip to second grade in a backpack. We’re seriously considering getting rid of our Turkish nazar (evil eyes) and using Chuck to protect us from bad juju. So I’ve decided to harness the protection of Chuck as I surf the web. Though I know the real Chuck is now one of the crazies intent on believing in the war on Christmas and protesting the non-existence of Muslim prayers in public schools, I’m choosing to remember Chuck as he was – a truth seeking badass. Together, 1983 Chuck and I will ignore the crazies and travel the web together and as we encounter those offended by red cups we will say, “Chuck be with you.”

Chuck