Tuesday’s With Autism: Think BIG Picture

MONDAY 11:55pm I’m officially five minutes ahead of schedule, folks. I have a sleeping four-year-old on my elbow, a snoring teenager making my eye twitch, but I’m ahead of schedule and I’m gloating, here and now **confetti throw**

In fact, this is the first time I have been ahead of schedule for the last few months. I recently took a new job as a Program Manager at a non-profit activity center for adults with additional needs. Last week, I would just stare at my phone in disbelief and set it down, like I was a time traveler from 1985 – I just couldn’t deal with the loud rectangle. It’s a slow process, but I’m getting into a groove.

I don’t want to play my hand too fast, but I LOVE my job. I have not only gained friends, but I have gained perspective, dance moves, checker skills, and personal, long-term mama goals. I hang out with an amazing group of adults – and it’s such a cliche – but while yes, I teach them, they also teach me.

Speaking of adults, let’s talk big picture plans – do you have a plan or are you an ostrich with your head in the sand? If you are an ostrich, it’s okay to admit it here and now, but you should game plan to morph into, say, a rhino, pretty quickly.  Are you charging towards your kiddo’s future? If not, why? Are you planning work skills? Money management? Independent living skills?

Listen, even if you are at the beginning of your journey and this feels IMPOSSIBLE, you need to PLAN to make your “impossible”, possible. It is easy to get caught in the cutesy-putesy childhood section of a diagnosis, but I’m gonna shock you with a little known (see: ostrich) fact – Childhood is 18-21yrs long. Adulthood is much, MUCH longer. In an “ideal” scenario, it continues long after you are alive.

Breathe folks, I am telling you this as a parent of a 14 year old that has been diagnosed for 10 years. I could not comprehend what I am personally saying even five years ago, it’s okay if you are not here yet…..just know you need to get here.

If you have started thinking of the post 18-21yr continuum, what skills are you working on? What are you including on your child’s IEP? What social skills and goals are you working on? Please sound off below or share on the FACEBOOK page – we learn from one another – let’s collaborate!

 

 

 

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Tuesdays’s With Autism: Following the Leader

I’m back!

It’s been a whirlwind few weeks, and the winds are still whirling, but I wanted to be sure I caught this Tuesday to get back in the groove of things.

Between holidays, a new semester, my advocacy class, and Aiden’s birthday creeping up, I have been thinking a lot about his journey and how we have shaped him for adulthood. I wrote this piece for another venue, but I’ve decided to share it here. Happy New year!

When children show a knack or interest in a particular activity, parents tend to go above and beyond to help them thrive. If a child takes a liking to a soccer ball they get on Christmas, they are enrolled and on a team by spring. Say they have a penchant for drawing. Art classes abound! So why do we, as parents, hesitate to embrace the other things our kids with autism love: vacuums, desk lamps, and tape, oh my!

Your child’s passion is their strength. Use this as a map to help create meaningful short and long term goals. When we threw my son a birthday party at his favorite laundromat, we were sure our typical friends would shut us down. On the contrary, I have never seen such an inclusive community snapshot than being in the midst of washing machines and friends of all abilities. Laundry-related words have helped us kick start speech, challenging behavior, and sets our sights on a long-term goal my son has had for years: Washing Machine Fixing Guy. Recently, I was at our Capitol talking with a Senator who met with my son’s class earlier in the year to celebrate Autism Awareness Day. She told him she had a friend with an appliance repair shop and that he may be able to shadow a few days for some on-the-job training. We took his “silly obsession” as a toddler and have embraced it to the point that at nearly 14, he has an opportunity I would have never thought possible 10 years ago at diagnosis.


If your child uses a reward board or a token system, try using pictures of vacuums as you make your way to the desired reward. If you have an anxious child who enjoys the soothing glow of a desk lamp, write in a desk lamp for their desk during your next IEP meeting. A tape loving teen would be a valuable aide to the teacher always hanging up new things in their class. Heck, a LOT of clubs hang things up and down their school’s hallways! Find a club leader and explain the passion. Sure, some people will say no because let’s face it, we don’t live in an inclusive utopia. But Parents…some of them WI
LL say YES. That’s how you create change.

Every child deserves to be a thriving member of their community. One of the greatest barriers to an inclusivity is awareness. As parents, we want the world to embrace our child, but we need to remember that includes all of our child’s gifts, even the “quirky” ones. Start small and think big: you never know where you and your child’s puzzle-pieced road will go next.

Tuesday’s with Autism – The Journey After Diagnosis…and Diagnosis…and Diagnosis…

Sitting around a table, I remember the moment right before Aiden was diagnosed.

“What do you think you would do if he *was* diagnosed?”

A) That’s a terrible spoiler alert.
B) That’s a HUGE question to pose right before even bigger news.

I had about 10 seconds left before our lives would all shift to the unknown path in our peripherals.

“I just know I can’t go to ear infection support groups. I’d get to support groups, continue therapy (therapies), and make sure I fought for him.”

That was October 2007. He was diagnosed with PDD-NOS. The year before, he had been receiving speech under “speech delay”.

On Election Day 2008, he was diagnosed with moderate autism.

In 2013, he was diagnosed with Epilepsy after seeming to hallucinate a few times, “fading” throughout the day, and doing a very specific tic with his jaw. After three annual EEGs, he was undiagnosed.

In 2014, he was undiagnosed with autism and diagnosed with Intellectual Disability, Disruptive Behavior Disorder, and Static Encephalopathy  from a professional that met him once for four or five hours.  His regular neurologist disagreed and rediagnosed him with autism and ID.

In 2015, we saw our first immunologist. He said Aiden didn’t have PANDAS, a diagnosis that had started to circle him.

In 2016, he saw a different immunologist who ordered even more labs. They showed he absolutely did have PANDAS.

It’s 2017. It’s been 10 years since his initial diagnosis.

“What do you think you would do if he *was* diagnosed?”

It wasn’t as much of a spoiler as I thought. The doctors, researchers, and the DSM surprise me on a pretty regular basis, but it is Aiden that has surprised me the most. He fights for a good day on a bad one. He appreciates a world that is too loud, too bright, too much. He is a people person regardless of his challenges in socializing. I’m watching him dance to the theme song of The Office right this second, as he fights a flare up that pits his brain against his body.

It has been a hard week. A HARD WEEK. I will talk about PANDAS soon, but for now, just trust me when I say I have dreamed of a world where responsibilities and hangovers don’t exist. I want to check out, just for a second, and not worry. not care. not research. not look at ingredient labels and cringe. not second guess (or third. or fourth). not irrationally worry that the pharmacist thinks I have Munchausens because I am ALWAYS picking up some script for Aiden. not rationally worry about his future. not play symptom whack-a-mole. not have a medicine cabinet that once made my moms jaw drop.  He is the one with the diagnoses, but we all live with the symptoms.

As I sat in the doctors office with him this afternoon, face mask on, tears in his eyes,  it was him who said to me, “It’s OK mom. You’re tired? It’s ok mom.” He doesn’t give up. I smiled, very, very wearily, and said, “I AM tired, Aiden. It’s ok, how are YOU feeling?” He smiled through the tears and said, “I have so much anxiety”. Then we held hands and I silently acknowledged every piece of our life dynamic that sat in those three, short, exchanges.

We are focusing on autism and PANDAS these days, but it doesn’t matter the label or the diagnosis. We fight. We strive. We work. Because if this kid is going to kick ass and take names, we will, too.

Haha Friday – Storms

It’s 4am. We just had a fantasically loud thunderstorm with more to come during the next few days. At the beginning of the storm, a dog who shall not be named peed on the tile. I guess that is better than anywhere else, right?

In the thick of the storm, lightning and thunder crashed, setting off the car alarms in the cul-du-sac. While I frantically tried to turn ours off (chase finally fixed it) not one, not two, but THREE of the kids woke up. Phoenix thought his car got struck by lightning (spoiler: it was not), Aiden was completely disoriented, and Lief was terrified by the loudness of the ordeal.

As I tried explaining thunder and lightning to him, I realized I know shit about weather, scientifically.  No, I know weather like a farmer. “It smells like rain”, “It’s pink outside – gonna snow”, “It’s green outside – there’s gonna be a tornado”, “Animals are acting weird – storms are coming” – these are just some of the things that I say out loud as the gospel truth. However, tonight, “Thunder loud go boom” was basically all I could muster before I realized I sounded like a complete idiot. I finally just let him sleep next to me and told him we could learn all about it in the morning (because I need time to study and save face).  Aiden refused to go back to his bedroom. He has found comfort passing out on the couch, snoring, and occasionally kicking me in his sleep.

I’m pretty sure Calista-the-other-dog is one nervous fart away from the devil. I’m actively trying to debate optimal dog poop time vs storms vs sleep. Like, it’s a real dilemma in my head.

Augie is asleep in his room like a champ, so I’m just going to assume he has peed all over the bed because why not?

Now I’m wedged between a clingy six-year-old and a snoring 13-year-old on a couch while I hide under the blankets to avoid the smell of dog farts, fretting about dog poo and kid pee.

And this, folks, is the story you tell in a sex-ed class.

Twas the Night Before Prime Day

Twas the night before Prime Day,

And all through the house,

Not a creature was stirring except for the mouse.

The screens were turned on, we muted the sound,

In hopes that good deals were soon to be found.

The children were mostly asleep in their beds,

While visions of super deals danced in our heads.

And Mom with the laptop and I on my phone,

Had a glimmer of hope for five minutes alone.

When we leaned in there was a sudden  loud clatter,

Groaned, we jumped up to see what was the matter.

Away from Windows, to see what’s the hap,

Pulled out my phone for the security app.

The sweat on my brow was a regular bummer,

But it is the cost of a hot, humid, summer.

When what in the world did I see with my eyes,

But a Prius in the driveway and stars in the skies.

With a bald-headed guy holding Washington Posts,

I knew in a minute it must be Jeff Bezos!

More rapid than expected, his drones started flying,

And with a sly smirk, Bezos started crying,

“Free shipping! Great deals! In a matter of seconds! At the tip of your fingers! The Prime shopping nexus!”

“We drop off on the porch, a mailbox, any spot”

“Now shop and shop and shop til you drop!”

My wife and I nervously glanced at each other,

As Bezos and drones went up and did hover.

And then in one moment, I heard on the roof,

The clicking of drones – we took pics for proof.

As I turned my head to mouth, “call the cops”,

Down the chimney Bezos went, with his virtual shops.

He was dressed in jeans and a button down top,

With a bag full of goodies for kids, Mom, and Pop.

His eyes how they danced, his behavior quite manic,

We gave him our card numbers, filled with a panic.

A roll of packing tape he held tight in his teeth,

packing and sweating in the hot summer heat.

As he marked off his list assuring fulfillment,

the wife and I nervously hid the kids in the basement.

A wild-eyed wink left me shaking my head,

But Bezos assured me, I had nothing to dread.

He typed in some code and the drones went straight to work,

Filling the house full of boxes, then turned with jerk.

And laying his hands atop of the drone,

He flew out of our house, wallets dry as a bone.

Jeff ran to his car, and we locked our doors,

Clutching each other, slumped on the floors.

I heard his fevered cry as he drove through the timbers,

“Happy Prime Day to all! Free shipping for members!”

Who’s Your Hulk?

Bedtime stories often are the same books over.

and over.

and over.

I can recite a few fan favorites by heart as I’m sure each and every one of you can, too. Even when we throw in a few new picks, the boys always come back to their tried and true books. We have started reading 5 Minute Avengers Stories, and let me tell you, the boys love it. In five minutes, I can turn those boys into glassy-eyed book zombies. I admit to glossing over a few sentences and adlibbing to get the point across in less time, but nonetheless, they stay fully engrossed with all of the superhero antics.

Last night, one particular story about the Incredible Hulk gave me pause. In it, everyone on the outside saw a loud, angry, monster. Hulk knows that isn’t all that he is. He’s sad that people stop and stare at him when he is out and about because he looks and acts differently than others. When he does try to kindly approach some people on the street, Hulk overhears them calling him names so he walks away, angry. He smashes something, further reinforcing the claim that he is only a monster. Hulk recognizes he is misunderstood, save the Avengers. They know that yes, Hulk is loud and often can’t control his emotions, but that he also protects everyone with this uniqueness he has been gifted with, and that he has a truly loving heart. Of course, Hulk has a speech delay as evidenced by his catchphrase “Hulk smash!” so he can’t fully communicate this. I don’t want to spoil the story for you, but he saves the day, and Everyday Citizen learns that it’s okay to be different. (Insert Reading Rainbow music).

As a special needs mama, this story resonated with me and got me in the feels probably more than the author intended. It made me think of my teen with autism. Not only are we in the throes of teenagedom , but Aiden also has a speech delay and is often misunderstood. He can look shy, (and trust me, this kid is NOT shy), but this is because he gets completely lost when it comes to social interactions with people outside of his “Avengers Squad”. What can come across as a tantrum is really a meltdown because his brain is trying to process everything all at once and he is in a sensory overload. In all of this though, his heart is gold. He turns into a puddle of mushy fluff when it comes to babies. He always wants to lend a helping hand. He is kind, but like Hulk, he has a uniqueness about him that you have to accept.

Lief is my kid full of emotions. He is quick to burst into tears if things aren’t Just So (whatever the Just So Du Jour happens to be in that moment). He’s five and full of spirit. He has no shortage of words, but does fall a little short in the attention span category. He is LOUD and always has GREAT IDEAS, even if you’re in the middle of talking about something completely different. He’s quick to tell you that you are “breaking (his) heart”, but also about a new word he can read, or an amazing song and dance routine he has come up with on the spot. Like Hulk, his emotions get the best of him. Like Hulk, he is truly kind and protective of the world around him.

Who is your Hulk? Is it your child with special needs? Is it a kiddo whose square peg learning will never fit in the round hole? Is it the neighbor down the street that comes off as crotchety, but is simply lonely and needs a friend? Could it be that person you have sized up based on nothing more than assumptions, but never really got to know? In the special needs community, we are always educating and advocating for acceptance, but I challenge each of you, myself included, to do the same in the “everyday world”. Find your Hulk. Look past the big, green, monster and  see someone simply Incredible.

World Autism Day

World autism day!

We have entered upper level autism in our house: teenagerdom puberty. (Dun-dun-duhhhhhhn!!!!)

We are balancing eyerolling, complexion issues, a passion for washing machines, the want to wear basketball shorts year round, queen, gangsta rap, contemporary christian YouTube videos, svu, the movie Robots, a hate for sudden loud noises, a disdain for being told no, sassy back-talking muttered under the breath, the want for friends, the need for privacy, the refusal to sleep anywhere but his couch in the living room, slow but steady progress towards adulthood, academic frustrations, the sneaky snack monster, the shout of “Mother!” when hes annoyed that immediately makes me sing Danzig in my head even if I’m fuming, and his insistence that he gets the front seat so he controls the radio….

…we balance all of that with letting go of what we assumed about Aiden when he was a baby. We let go of the wants WE think he Should have, and enjoy this amazing kid that he is. He is such a typical teenager in many ways, and in many ways he is not, making him perfectly Aiden.

I remember being terrified of this phase, TERRIFIED, but we got here, we withstood the storm, and we have started another leg of our journey better prepared, but still curious about where our adventure will take us. With Aiden as the captain of our Autism Ship, it’s guaranteed to be something incredible.