Pardon My Dance Break…

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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…

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Thanks For The Coffee Klatch Paul Stanley

Toddlers on bench in gas masks during WWII

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

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

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

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

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

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

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

 

I Think My Spirit Guide is a Wrestling Quaker

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

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

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

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

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

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

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

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

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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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I’ve Found a New High Horse and I’m Mountin’ Up

 

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As a long-time teacher, former world traveler, previous expat and world news junkie, I am well versed in the practice of climbing atop my high horse. And at the risk of sounding vain, might I add that perched upon my mighty steed, arms clutching research and eye-witness accounts, nose cocked as I stare over my glasses with a smug, judgmental gaze, I look damn good on a high horse.

Before my days were filled with boogers and butt wiping, I rode many a high horse. I was rigid about genocide after researching in Rwanda, dogmatic about the effects of lifelong fighting on children after a month in Belfast, authoritarian about Turkish politics after living there, emphatic about immigration after marrying the Turk (and being screwed by INS like a high end call girl) and the list goes on. But in the past few years, motherhood has caused me to stable my high horse. While I feel the occasional flare up from the old palomino when an unsuspecting fool makes a comment about immigrants (While my gut says, scream “Oh no you didn’t” I’ve found that isn’t as effective as a fact-filled, first hand account smack-down.) for the most part, I’ve been on the down low. Until now.

I’m new to this whole deaf and hard of hearing world and thus it will be quite some time before I’m ready to sit firmly upon the ol’ high horse regarding any of those issues. However, there is one subject on this journey that has been causing me to feel a stirring deep within, and while I first thought it might be my high-fiber diet, I realized that feeling is the need to mount my high horse and advocate in the arena of early language acquisition through ASL.

There are various schools of thought regarding language acquisition for deaf and hard of hearing kids. Some say sign only. Some say spoken English only. (Which is kind of stupid because that’s expecting a kid who can’t hear to be able to learn to speak… but I digress.) There are those who believe signing slows oral development (which has been proven wrong again and again). There are those who think signing alienates. And then there are those who think –give those babies every option and let them make the choice. I fall into the latter and now, almost a year later I’ve got good reason to believe the ‘give them both’ concept is the answer.

Last summer we learned that though Nugget was 2, his expressive language was that of a 6 month old. Even though he had one working ear and usually that should’ve been giving him enough access to speech to get him talking, it wasn’t so it was suggested we begin using ASL. I wasn’t expecting that. How was I going to teach my child a language I didn’t even know? How was I going to learn ASL? (I’m old and thanks to age, wine, and an excessive amount of Aqua Net in the 80’s, my brain cells were not in top form and learning Turkish had pretty much taken my last good ones.) I was told I needed to wade into a world completely foreign to me, again, and honestly, I didn’t want to. But I knew something had to happen. Nugget was trapped without a way to express his needs and boy, was he pissed.

Within weeks of meeting our Fairy Deaf Godmother (who waves her wand and suddenly he signs) everything changed. Once Nugget could discern his need and specify, “I’d like a dry martini” over “I just pooped,” his demeanor changed immediately. (No, he’s never ordered a dry martini but I felt it was a good sign for me to learn…you know…just in case.) While he still has latent tyrannical tendencies, it’s nothing like before.

In less than a year he’s developed an ASL vocabulary of close to 200 signs, knows his colors, numbers and much of the alphabet. He’s beginning to sign sentences and even tells me stories. What’s more, he’s begun to speak. (Oh not well or anything and with the exception of the words “go” and “hi” it’s like playing charades with a marble-mouthed drunk but he’s trying.) ASL gave him communication, which lessened his stress and gave him the confidence to play with speech. We gave him both languages and he’s deciding. Before he mostly signed but now he tries to say the word and signs it so I understand. Maybe someday he will only speak. It’s his choice.

Add to that incidents like today and I’m confident that the “give them both” approach is right. While Nugs and I were making an emergency toilet paper run to the store, we detoured to the donut counter. As we signed our conversation about donut selection, I noticed an older man watching. The man asked if Nugget was deaf and I told him ½ but he’s learning both ASL and English so he can communicate in whichever language is easier for him. The man smiled and said, “Thank you.” He pointed to his own hearing aids and told me, “I was born deaf but in 1944 they thought if you forced deaf kids into normal schools they’d learn to speak. I didn’t even have a hearing aid until I was older. I learned to lip read but it’s never been easy. I always wished I ‘d learned to sign. You’re doing the right thing. He’s going to do great.” (Oh you know that gave me a huge case of the feels.)

Communication is hard. Being a kid is hard. Being a kid who can’t communicate? Aw hells no. So as I continue on this journey and watch Nugget develop, I feel the need to get back in the saddle, clutching my research and first-hand knowledge, stare over my glasses judgmentally and say, “For the love of God people, shut up and give them both!”

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Hannibal Lecter Goes To Nursery School

d12fc594e4e224b8aec6afd7e609d067 (1)First days suck and now it has become clear that both of my kids suck…nay…super-suck at first days. I had great hopes that Nug would be more macho, or at least the toddler version of stoic, whatever that is, but no. He too is a big ol’ mama’s boy dead set on giving his mother an ulcer to match the one caused by years and years of his brother’s first day antics.

Last week was Nugget’s first day in the Early Childhood program at the deaf school. We thought it would be good for him to spend time with kids like him, hone his ASL vocabulary and get accustomed to a school environment before we start full-time school in August. Ok, that’s a load of crap. That’s what I told the Turk but in reality, I just really wanted those four hours a week to meander around Target and maybe drink a latte that wasn’t filled with toddler saliva. My needs are simple but I’m a desperate mother.

Leading up to his first day I pumped it up. We talked all about school and bought an Elmo backpack that counts when you punch Elmo in the nose. (Yeah, you’re probably not supposed to punch Elmo but you know how he gets.) We gathered his requisite supplies and even got a lunch box. It was all very exciting as he was well on his way to big boy status.

On D-Day we put Number One on the bus and drove downtown to the deaf school. Nugget was atwitter, signing along with his jams, dancing in his car seat and laughing at his own wit. Like a fool, I thought, finally, something with this kid is going to be easy. He’s going to be one of those rare unicorn babies that walk into their classroom, wave goodbye and poof, parenting success.

Of course, leading up to this I’d had a massive meltdown and had to be texted off the ledge the night before. (Yes, texted off the ledge is a thing. It’s the modern remake of talked off the ledge. Get with the times.) I was sure my baby was going to be sold to a child labor syndicate or tied to a snowdrift for timeout, (Yes, I realize that is not possible but you can’t reason with anxiety. I read that in a self-help book once.) or worse, what if he couldn’t communicate his needs? I mean in our world I’m the only one who….then it hit me… this is the only place where someone else would be able to communicate with him. The entire school functions only in ASL, his first language, so of course they’d understand him. Once I got past that and the whole leaving my baby out in the wild thing, I was cool with it. Nugget being so excited only made it easier.

We walked in the big doors, greeted the school secretary who patiently waited through my remedial signing as I explained who we were and where we were heading. (Seriously, I feel like I signed for 10 minutes straight and when I was all done and proud of myself, he simply signed, Ok. Very anticlimactic.) Down the winding hall we went with a bounce in both our steps. This was going to be awesome. First days rock with this kid. Good work magical unicorn baby.

But then he saw the door. Nugget froze. He stiffened his body and I had to push him in on his little heels. It was the toddler version of that scene in Silence of the Lambs when they wheel Hannibal in on a handcart. He took one look around and immediately lay down on the ground. There I stood with a little fat kid, bundled in a huge winter coat and Elmer Fudd hat lying stiff as a board at my feet staring at the ceiling. What is this? Where in the hell did magical unicorn baby go?

I nervously smiled while trying to understand everything his teachers were signing to me. The teachers gathered around and began signing to him, reassuring him and introducing themselves. How did my magical unicorn baby respond? He closed his eyes and squeezed them shut because when someone is signing and you don’t want to listen you just don’t look at them, obviously. Genius move unicorn baby.

After a few minutes of working through my bag of tricks and standard Irish-Catholic mother threats, his teacher and I decided it best if I just made a clean break…only there was nothing clean about it. I heard his screams all the way back to the front office. Fortunately, it’s a deaf school and thus, I was probably one of the few that heard him at  full volume.

I spent the next three hours in the parking lot counting down until pick-up. Though upon my arrival he lovingly embraced me like I’d just crawled out of a watery grave, he was still pissed. As we walked out of the building at least five teachers totally unrelated to his class signed to me how sad he’d been all morning. (Guilt is even more powerful when it comes in a second language.)

Thankfully, his teacher is amazing. She’s like a beautiful, deaf Judy Collins who gracefully signs songs and very exciting stories. She told me his communication was stellar and that he’d let her know why he was pissed and what he did and did not want…repeatedly. I guess that’s a win huh?

Week two is going about as well as week one but we’ll keep trying. He’s already picked up new signs and is beginning to learn his ABC’s in ASL, something his father has yet to master. It seems school, as with all things Nugget, will be a struggle but in time we’ll get there.  Tomorrow morning, I’ll wheel Hannibal in and we’ll try again.

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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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My Pretend Lotto Win Turned Me Into A Koch Brother

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With all the Powerball hoopla happening it’s hard not to get sucked in. Let me rephrase that. It’s hard for me not to get sucked in. My husband, the Turk, is having no problem avoiding the excitement.

“Why everyone throwing money away like this. You know odds of actually winning?” He snarled.

“No. I don’t do math so I don’t know the odds but I know they suck. It’s just fun.”

“You think people give money to government is fun? I do not give my taxes for fun.” (He’s been an American for two years and he’s already a budding hostile Libertarian.)

“That’s not what I mean. I mean it’s just fun to dream about winning, you know, your life changing in seconds like that.”

“Well I think it is stupid. People act like sheep. Same here. Same in Turkey.”

And because I’m a well-educated woman who’s made a career of crafting witty retorts using nuances of the English language, I replied with, “Shut up. You suck.”

Though my husband made it clear he wouldn’t be condoning any Powerball purchases, I was quite certain he’d be willing to spend my dough if *nay* when, I won. (I once read a book about how visualizing what you want makes it happen. I don’t think that applied to the Hoosier Lottery but it couldn’t hurt right?) Being the responsible mother I am, after a day of grocery gathering, I snuck off to the nearest gas station with my offspring in tow to buy the winning ticket. (Don’t judge me, it was an economics lesson for the kids.)

After waiting in line, explaining the process to my inquisitive 7 year-old and then debating our chances given the numbers we’d drawn, we began to spend our millions.

The Nugget just wanted to buy cookies. Lots and lots of cookies. I’m not sure if that was his immediate need or if he had plans of building a lotto-winner size grotto of snickerdoodles. He’s 2. Either is possible.

Number One Son was more interested in a mansion with separate rooms for video games and Legos. He also wanted cookies but he was hoping we could take care of that without a lotto win.

As for me, my plan was simple. After I paid off all the debts of myself and those family members I actually like, bought an island, changed my name to Cher, build homes for my BFFs on our compound and started college funds (Because let’s be honest, by the time Nugget gets to college it will take a lotto win to pay for it.) I would use my money do to the things I’ve long dreamed of doing but it became evident I’ve got a few political axes to grind.

Upon receipt of my lotto winnings, my first order of business is to buy off and take down the Donald J. Trump campaign. (Donald J. Turdface as my brilliant son has appropriately renamed him.)

Next, I will bankroll a lobby to pass legislation forcing insurance companies to cover children’s hearing aids. (Most aids aren’t currently covered, as they’re considered elective. Yes, you read that right- hearing is elective. As the insurance woman told us, “You guys are lucky. We cover his since his is considered a prosthetic for the missing ear.” Um yeah, lucky was the first thought that came to mind when my kid was born with one ear.)

Once I get my footing with manipulating the government on that one, I’m moving on to women’s health and education lobbies. It’s time to put the artsy, not just the fartsy, back in schools.

Next, I will throw my millions towards attacking the NRA. Their false propaganda has worked well for them so as one of the richest women in the world, I’ll turn the tables. (I’m coming for you LaPierre.)

And to round things out, I will throw my remaining cash at the following services to better our nation-

Making sure Sara Palin is never allowed to enter politics or punditry again. (That woman drives me insane. I’ll be forever grateful I did not live in America when she was a VP candidate. Hearing her ridiculous ramblings translated into Turkish was bad enough.)

Banning the Kardashians from any and all “news” programs. (Why won’t these people go away?)

And buying out Fox News and burning the entity as a first step towards bringing honesty back to news.

While I prattled on and on to my now bored stiff children about what mommy was going to do with her millions, I realized, I’d just become one of the Koch brothers – using my money to manipulate a democracy to get whatever I wanted, not what was best for the people. (Though you all know that what I want is what’s right for the people…right?) Being imaginary rich made me a vindictive asshat. I wasn’t expecting that. That sucks.

I guess it was a relief to wake up Saturday morning, still poor but with my soul in tact. I guess I’m not cut out for wealth as I’ve got abuse of power written all over me. Self awareness blows.

But now the pot is up to over a billion and my shot at winning is about the one in a billion as well so after school-pick up I’ll sneak off and we’ll do it all again. However, this time I think I’ll stop my imaginary spending after I change my name to Cher and let the rest play out after I cash the giant check

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I’d Like To Call a Do-Over

January

New Year, new you right? Well we’re now six days into the new year and it seems the new me is just as snarky, wrinkled and cellulite riddled as the old one. So much for New Year’s miracles.

I don’t do resolutions anymore because I not a big fan of self-inflicted failure. I’m sure somewhere there is scientific evidence to prove that 99.9% of all New Year’s resolutions end in disappointment. Why become a statistic, I say. Instead of resolutions, I just call a do-over. You know, like in elementary school when you were playing kickball but missed the ball and called for a do-over so you could try again. What, that never happened to you? Whatever Pele. (Full disclosure: as an un-athletic chubby kid, without the do-over, I’d have been nothing.) At Jefferson Elementary in 1979, a do-over was a totally legit way to own your screw-up and try again with no condemnation. If it was good enough for the 3rd grade kickball field, it’s good enough for adulthood.

Last year, my do-overs were amazing. I started 2015 with a bang. I kicked that diet soda monkey off my back and for like one whole week I became one of those smug broads that say, “Oh I don’t eat refined sugars.” Ok, so the sugar thing was a bust but I did well with others. I drank water like a camel about to hit the Silk Road and logged enough daily steps to make Jack LaLanne proud. In the evenings I read from actual books instead of cringing at stupid Facebook posts or creepin’ around Pinterest like a fat girl looking for a cake recipe and my positive outlook was actually positive. Nothing could stop me, except February.

By week five of 2015, being Positive Polly and swallowing my smart assed brilliance was giving me heartburn, but I was doing pretty well on everything else. By March I was tired of books and really needed the kind of smut that only Facebook can provide. By April I’d decided I’d been clean long enough and would be safe checking in on Pinterest for new springtime meal ideas. Not so. I was sucked back in like a junkie in a back alley. By May the Coke Zero monkey climbed on for a piggyback ride again and by June when the Nugget’s Pandora’s box of health-problem- sprang open, I just said – screw it all and let the peanut clusters flow with wild abandon.

The second half of 2015 all bets were off as it was a blur of doctors, audiologists, therapists, hospitals, good news, bad news, and lots and lots of wait and sees (And if you’ve ever had a kid with issues, wait and sees suck the most.) But now as we embark on 2016, his kidney is working as expected, though it’s one of the wait and sees. He’s adjusting well to his hearing aid and while our biggest wait and see is in the speech arena, his ASL skills are hard core amazing so I finally feel like maybe, just maybe I can call a do-over and do some things for me.

Now, don’t get me wrong, I’m not giving up booze or signing up for Zumba or any nonsense like that. With age comes wisdom and I’ll be 44 years wise in 2016 so I no longer have to wow anyone with my firm buns. (Sorry Turk, but there is just as much love in these flabby buns.) I’m also wise enough to know that my evening Merlot is the only thing that stands between me and a possible rap sheet. (Humanity is stupid and coping is hard. Red Starbucks cups, Donald Trump, need I continue?)

No, the universe gave me a hard-core schoolin’ on the subjects of priorities and expectations in 2015 so as for my 2016 do-overs, I’m keepin’ ’em real.

This time around I’m not kicking sugar, just cutting back. I spent three days sans sugar and by day three my family began dangling peanut clusters and Tootsie Pops over my head in the hopes I’d bite and end their misery. I might have a problem, but we’ll start small.

I’ll still keep trying to hit my Jack LaLanne level step counts but I’m think it’s time to add some upper body work too. Last night when I was waving at the Nugget upstairs my upper arms continued to wave until he made it all the way down the stairs at toddler speed. I haven’t been sleeveless since 2006 and clearly things have taken a bad turn in those years. Ain’t nobody wanna see that.

If all goes well in the above do-overs I’ll meet my ‘drop a few pounds’ do-over. I’m not a fool that saddles myself with weight loss goals in numbers. No, I just want to put a little more distance between me and a me that might need to ride a scooter to grocery shop.

With a few new career plans, a goal to work harder to reach ASL fluency to keep up with the Nugget, oh and that 5K for deaf and hard of hearing kids that I committed to running in April, that’s it for my 2016 do-overs. (Stay tuned for updates on the 5K. Though I was once a runner, that was 30 pounds, a geriatric childbirth and one knee surgery ago so I predict this will end with a tear-fueled crawl across the finish line but at least it will be a dramatically memorable event.)

So you see, as we cruise into 2016 I’m resolving nothing. I’m committing to nothing. I’m just going to try again. Sometimes, you need to do that when balls are coming at you faster than you can handle. Why beat yourself up? Just call a do-over and try again.

I’m Really Smart In My Language

I’ve been a parent for seven years now. That’s really not that long but there is one thing I’ve learned in those years and that is that as a parent, you have to admit you’re wrong a lot. (Or maybe that’s just me and I screw up a lot?) Now I’m not saying you have to issue a full-on mea culpa with every damn whoopsie. Oh God no, that would be a sign of weakness which could drive the little hellcats to eat you in your sleep. No, I’m just saying there are a lot of times when it’s really important to admit to your kids that you were wrong. I’m having one of those today.

For 2 ½ years I’ve spent most of the day alone with my silent sidekick, the Nugget. He’s the Teller to my Penn, a funny little dude with perfect comedic timing who fabulously compliments my surly nature without uttering a word. Back when his brother was my 2 year-old sidekick he was the opposite. He had the vocabulary of a 50-year-old college professor and talked like a damn Republican on a filibuster. I was accustomed to narrating our day and getting full running commentary in return. I often felt like I was with a really, really short adult. Because of his vocabulary I probably gave him more credit for understanding things than he probably deserved but it’s hard to remember a kid is only 2 when they can out-talk you in two languages. But as much as I’ve overestimated Number One Son, I’ve underestimated my Nugget.

Because he’s got one ear and is partially deaf and had a lot of health issues in his first two years, I’ve always babied Nugget. (I’m also old and he’s my last so that didn’t help either.) In addition to his bum kidney and missing ear, he has Apraxia of Speech which means that so far, he’s got no verbal communication and when you’re a super verbal mom with a kid that can’t speak your language, it’s easy to think they’re not understanding anything either.

Think about it, when people meet someone who doesn’t speak their language, they tend to speak louder, slower and more simplisticly to help them. When the foreigner doesn’t respond, it’s assumed that person didn’t understand and may not be that bright. I know, it happened to me all the time when we lived in Turkey and I was learning the language (I wanted to hand out cards that said, “I’m really smart in my own language.”) and it happens to my husband, The Turk, every time he opens his mouth with his thick Turk accent here in middle America and he’s a freakin’ engineer. (Full disclosure- my mom only stopped speaking loud and slowly to him last year and he’s been around for about ten years.)

Today I realized I’ve been giving my Nugget the foreigner treatment. Thanks to an amazing woman we met though our Deaf Mentor program, we started learning ASL about six months ago and for a toddler, Nugget’s really picked it up fast. He signs all his basic needs, his colors and is working on his numbers. He signs along with the songs on his favorite show, Signing Time, as well as signing animals and other nouns about town. So while the little dude can’t talk, he can sign like a champ. And while he’s been mastering sign language, I’ve been half-assing it. I sign  and I work  to learn them but I still push my verbal language on him. I don’t always remember to sign what I say and I don’t always have the patience to try to decipher what he’s signing to me. Crappy right? I narrated everything to his brother in both English and Turkish when he was little. I spent hours working on pronunciation with him and listened to what he had to say. Sure, maybe some of this has been second child syndrome (Ain’t nobody got time for crap with child number 2). But I think a lot of it has been that I just didn’t understand that ASL is his language and I need to accept that and communicate with Nugget in his language.

Last night he kept doing a bunch of signs that didn’t really make sense to me so I brushed it off but this morning he did the same sequence again. Me, Santa, football, hat, want. It hit me like a brick. “I want Santa to bring me a football helmet.” I asked him if that’s what he was saying. He signed yes, waved his hands in silent applause, hopped up and down and giggled and giggled. Mom finally understood.

And I just cried. I sometimes forget that the little guy in there is smart and amazing and not a baby anymore. He’s a big guy who loves football, understands how Santa works, has a rapidly growing vocabulary and is now making sentences.

So my darling Nugget, I’m sorry. I was so wrong. You are really smart in your language and I’m a dumbass for expecting you to adapt to mine instead of using yours. From now on Mom is going to give you the same treatment she gave Big Brother and just like I worked to learn your father’s language, I will work to learn yours. Maybe eventually, you will be able to use my language but even if you never do, it’s ok because you are absolutely brilliant in your own language. (And P.S. I’m going to get that message to Santa STAT!!!)

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