A Baller He Is Not

 

vintage basketball ballers“Other way!!!! Run the other way!!” Screamed a gym full of parents and grandparents from the bleachers. Nugget, oblivious to the words coming at him because he won’t wear his hearing aid in a noisy gym, offered a smile and wave before he continued dribbling down the court to the opponents’ basket. Fortunately, he stopped short of shooting into their basket. Finding himself suddenly alone with no one guarding him, he decided to shoot at the nearest basket instead. Unfortunately, the basket he chose was the practice basket on the side of the gym. That did not deter the 5 year-old baller though. He took about five shots resulting in five air balls before finally losing the rebound to an unusually tall 7 year-old that had made his way down the court.  Nugget was proud of his possession and the bleachers shook with the bladder busting laughter often found at sporting events of the under 7 crowd. It was a win of a different sort.

Nugget had a similar showing during this past flag football season. During one play, his objective was to grab the handoff, pivot and take it the 10 remaining yards over the goal line. Excited by the opportunity to be the runner, Nugget took off, forgetting the part of the play when he needed to pivot. He tucked the ball under his arm and ran. He ran and ran and ran. Again, the sidelines full of parents tried to help him out “Other way! Not that way!” and again Nugget sans hearing aid assumed that was just a cheering section and offered a thank you wave. When it was clear he wasn’t going to stop, the fans changed course, “Run little guy! Run!!!” And that he did, all the way into the neighboring soccer field. 

Initially, I thought maybe his sporting difficulty was simply because he couldn’t hear. As a guy with one ear, it is hard to always catch the play when a team of kids is excitedly squeaking in the only ear you have. After the football run, my husband, The Turk, and I considered the idea that football might be a too much for Nugget because it required more hearing and concentration than my hard of hearing, attention deficit child could muster. We decided he’d have better luck at basketball because ultimately, the process was pretty basic. Dribble, run, shoot. We were wrong.

In addition to the dribbling drills, Nugget added some dance moves, spinning and swaying his way up the lane. When they practiced guarding, his moves took on a disco slant and during shooting, he struck a victory pose after every missed ball. During games he ran in circles waving his arms and usually panicked and forgot dribbling was a requirement if the ball landed in his hands. As I watched my flailing Nugget I was reminded of an adorable middle schooler I taught years ago. In addition to teaching Danny, I was also his tennis coach. Tennis and Danny were not a winning combo. In every doubles match I had to remind Danny that there was a time and place for tap dancing and it wasn’t on the tennis court. When not using his racquet as a dance prop, he used it to wage epic sword fights with an invisible nemesis and like my Nugget, he could spin and shimmy like a champ. Though coaching Danny was craz-inducing, I loved that boy and he turned into a fabulous man. (Word is he’s still dancing.) 

Remembering Danny did comfort me on Nugget´s future but still I was concerned with his immediate performance. His brother is a natural athlete, only hindered by his height. Number 1 has stood about a foot shorter than most players on both his football and basketball teams this year but he has still managed to kick butt. Nugget adores his brother and tries desperately to emulate him but his performance in the sports area is slowing showing that might not be possible. While Number 1 seemed to directly inherit the genes of his father and former professional athlete grandfather, Nugget appears to have inherited the genes of his mother, the benchwarmer. 

My career in sports looks like this______________________________nothing. I did spend one season on the girls tennis team back in 10th grade but spent most of that season on the bench. I was athletically challenged as a child. I had a minimal interest in football and I was rather skilled in 4-Square at Jefferson Elementary but that is about where I maxed out. As an adult I took up running and while I love it, I suck. I’m slow and wheezy and don’t have a lot more than a couple miles in me at my best. But watching Nugget’s sashay form while playing guard did give me hope. The kid does have solid dance skills and a flare for the dramatic like his mother. He has no interest in the artsy fartsy way of life yet, but in time he might find his way. 

I realized that playing sports was not my jam but I am damn good at sports momdom. No one is louder or more overprotective than this mom. I’m the first to take on a washed-up football coach twice my size if he is disrespecting one of my babies (true story and that fat bastard is still scared of me.) and if you bench my kid in favor of your talentless turd of a child just because you’re the coach, you will feel my wrath. Hopefully, like his mother, Nugget will someday find his place but for now, I think we might forgo soccer season and look into a modern dance class. From what I’ve seen on the basketball court, he might be a natural.

Advertisements

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.

 

Grab Your Cape One Eared Wonder, It Is Time.

FullSizeRender-18

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.

FullSizeRender-16

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

 

high horse

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!”

signlanguage005 (1)

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.

 

Image-1-15

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.

school-laughterisbetterthanprozac.wordpress.com

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.

Kid Music is Crushing My Soul

A couple months ago I made a fatal error while driving with the Nugget. He was on the brink of a car seat melt-down as two years olds are wont to do, and being the tired, old mom I am, I sought a quick fix. As I glanced down, I saw at my fingertips, a CD from his music class. I’d never bothered to pop it in before but had hopes it might sooth the savage beast. It worked, but since that day the chubby dictator in my backseat has been holding us all hostage with demands for his, and only his, music.

Any parent that has successfully reared a child through toddlerhood is aware of the horrors of kid music. Barney, The Wiggles, Raffi, the list of horrors goes on and on. I personally remember demanding a particular rendering of “Rubber Duckie You’re the One” brought to life by the nasal voice of Ernie, over and over long before I could put the needle on the record. (Yes, I’m that old you young whippersnapper!)

With Number One Son I suffered though a series of ditties performed by Turkish Muppet-like creatures from the show Benimle Oynar Misin? (Won’t you Come and Play With Me- for you non-Turkish speakers.) Seven years later I’m still singing one tune in Turkish about the phone ringing every time my damn phone rings. (P.S., in Turkish the phone goes vhir-vhir. It doesn’t really but it’s kind of like how in Turkish the dog says how how how. You know the Turks, they’ve no need to conform to your standards. That’s how they roll.) Thankfully when we moved to America we discovered Yo Gabba Gabba, which was far less nerve grating. I still sing their classic, There’s a Party In My Tummy, every time I have a good meal. Now that’s a musical masterpiece.

But the Nugget’s music is killing me. His taste is horrible. I blame his father, the grown-ass man with the musical taste of a tween girl. I’ve tried to subject him to some more funkily tolerable kiddie tunes but he’ll have none of it. He’s got his jams and those are the only ones he will allow, but his jams have become rather redundant.

Last week the Turk was departing for Home Depot with the boys in tow. As he got into the car I informed, “Track 27 is the one you’ll need.”

He gave me that look that says, ah hells no, and replied, “No. I will not listen to that crap.” (Who are you to judge, old man with One Direction on your gym playlist?)

I gave him that look that said, fool please and replied, “Good luck with that.”

Upon their return the Turk looked battle ragged. “Well?” I prodded knowing exactly the horror he’d faced.

“I don’t understand. Why that song and why is Sam the Dinosaur scared of the mouse? He is big. That song is stupid.”

Indeed.

Recently I made yet another bonehead move and got him a new CD at the library. It’s the soundtrack to his favorite show, Signing Time. Signing Time on it’s own is a brilliant series developed out of necessity by a mom of a deaf kid. (All great things can somehow be tracked back to moms.) It uses perky kid songs to teach ASL. (Full disclosure: I, and many other hearing loss moms credit the show to our own ASL retention.) The songs are catchy but repetitive so you can practice the signs again and again in time with the music. It’s about the only reason we have Netflix as Nugget watches it constantly.

Since we got the new CD the moment we near the car, he signs ‘I want Signing Time music.’ Listening to the tunes on constant replay was bad enough but now he demands I sign along. Now to you parents of hearing kids, you might not know the dangers of signing while driving but I’m here to tell you, it’s a risky venture.

First off, many signs require two hands, a move not compatible with operating a motor vehicle. I almost took out a minivan in the school lane last week during the Days of the Week song. Damn two-handed Sunday.

Next, there is the whole turning around to figure out what your backseat passenger is trying to tell you. I’d been nearly running off the road  repeatedly for months before I learned that car companies actually make special mirrors compatible to your car for signing passengers. Who knew? (This is why the state assigns you a deaf mentor from the get go to help you navigate. Points for you Hoosiers.)

And finally, there is the offensive misconception issue. When you are driving along and see some broad in a car with no visible passenger gesturing rapidly, the automatic assumption (as I’ve recently learned) is that she is flipping you off in an act of road rage. Trucks full of landscapers are hard pressed to believe you’re doing the Won’t You Be My Friend? song in sign language for an unseen toddler. (In some situations you will need to produce said toddler to prevent escalation. Trust me.)

The moral of the story is, maybe someday Nugget will be able to speak, maybe not. We just don’t know but either way, he’s a music nut and the best we can hope for is that in time his musical taste will develop as well. My hope is that if I keep peppering his crap music with a bit of mine, eventually he’ll understand and leave the dark side. It hasn’t worked with his father and his older brother has been making us watch him Whip and Nene for months, but there’s always hope for the younger generation.

dancing