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.

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Changes – Real Life Autism

Changes are coming!

Live Like Whoa is now Real Life Autism.

Same stuff, different name. A tighter grip on what in the world I’m trying to do with this thing.

 

The idea came from three different moments I’ve had in the last month.
1) A friend talking to me about her desire to ask the *real* questions about ASD in an anonymous format. Sometimes (a lot of times), we have questions about incredibly sensitive subject matter. sometimes its not even that sensitive, but man, you dont feel like having your name blasted for the world to see, you just want advice!

1a) I am always saying I want people who are not regularly exposed to autism/special needs to ask questions. So maybe with an anonymous option, people will send me questions and we, as a community, can educate one another.

 

***I have made a sarahah account for completely anonymous emails. I cannot see who sent them. If you would like to submit a question for me to post for suggestions and/or feedback, please send it to: reallifeautism.sarahah.com***

2) The TV debate. You know the one. “Atypical doesn’t show *my* autism”. “Parenthood didn’t relate to *our* world”. “Sesame Street only sort of got it right”. As it turns out, studio execs aren’t our voice, we are. And while I may share “sad” or maybe even uncomfortable things, it wont be to illicit pity, it will be to show all sides and all “levels” of autism. I hope to highlight not only my guy, but lots of people (that’s where you come in, eventually)

3) A hashtag I made. #RealLifeAutism, as a matter of fact. I shared a picture of Aiden with a puberty-autism infused quote on my personal Facebook. I was amused, but I started seeing sad faces pop up. I realized that *I* had his context, but not everyone did. However, some fellow autism mamas smiled along with me. “yay for language!” “he’s expressing himself!” “typical teen!” and I thought, “man, they got the context because they live it, too!” Again, it was a moment when I realized that Real Autism moments are important to share with the neurotypical (NT) community.

Note: What I share about Aiden, I share with his permission. Sometimes he says no, sometimes he says yes. My hope is that someday he will be able to pop on and share his own thoughts.

There will still be #FridayHaha and #TuesdaysWithAutism but a few more things may be sprinkled it depending on oh, you know, life.

So what do you think? Advice? Comments? Questions? Sound off and let’s see how this goes!

Tuesday’s With Autism – Life and the Laundromats

 

It’s a bit hectic today, so I’m doing a flashback post. The original is here. It’s my favorite piece to date. There’s a song by The Uncluded (Kimya Dawson and Aesop Rock) called Delicate Cycle that I discovered a few years ago. It is Aiden’s Anthem. I cannot listen to it without tearing up with all the feels. Listen to it. Who knew so many people could learn so many lessons from the laundromat?  Enjoy the piece for the first time or again.

Dinosaur themed parties are weird. Who in their right mind wants a party based on a lot of dead animals, right? Pirate parties are also ridiculous. Why celebrate a child’s birthday surrounded by reminders of the barbaric thieves who used to rule the sea? Don’t get me started on princess parties. I’ve never been a frilly girl and I have three boys so the whole idea is beyond me. This, of course, is the mantra I chanted as we planned my son’s 9th birthday…at the Laundromat.

Aiden has autism, and for as long as I can remember, he has been in love with washing machines. Dryers are pretty good, but the washing machines are the ones most near and dear to his heart. Even before I ever heard the word ‘autism’, I knew to keep the laundry room door shut because once Aiden started walking he would go straight to the washer and try to climb in.

Washing machines played a role in Aiden’s speech development. He only had a few words at two, but at three we saw a language burst. He would walk around and say, “washerwasherwasherwasher”. Say it fast, just like that. Can you hear it through the ears of a child with autism? If you say it long enough, you will hear the sound of the motor whirring and the steady beat of laundry spinning. This was the gateway to other laundry themed words and eventually, non-laundry themed words.

Aiden started collecting Sunday circulars from any appliance store that had pictures of washers. We cut out the pictures and made him a little book that he could look through when he got anxious or the world became too big. As he got older, he started watching washers “clonk” on YouTube (AidenSpeak for when the washer is spinning and the load becomes uneven).  He worked for trips to appliance stores. We would spend hours walking through Lowes and staring at washing machines when he had a good day. Aiden would inspect each and every one diligently turning dials, opening and shutting doors, comparing and contrasting the top loaders from the front loaders. The first time he saw the bright red front loader display, you would have thought he found the pot of gold at the end of the rainbow. He was complete.

I did not think that moment could be topped until one day when I found myself with a broken washing machine and not enough money for repairs. I loaded up the kids and headed to the Laundromat for the first time. It was by far the lousiest one I had ever been to. It was musty, had cracked tiles, there was no TV, and a few machines were out of order. Aiden threw his arms up in the air and said, “I love this place! I love all of the washers!!!” He spent the entire time inspecting each one, listening to the motors, laughing, helping load and unload the laundry and really looked to be in his element. Until that moment, it had not ever crossed my mind to take him to one. Not once. It was one of my greatest “Duh!” moments of momdom. From then on, working washing machine or not, we made special trips to Laundromats all over town.

This year has been a struggle for Aiden. I think he has become much more aware of the fact that he is different from the other kids. He skips words when he talks, school work is harder for him than his peers, and playing takes a lot of effort. Aiden’s autism makes overgrown grass look like an endless jungle, and the soft buzz of a dull motor or overhead light most of us don’t hear sound like a drill against his ear. Anxiety is constantly trying to be managed and it usually resorts into tears and hugs away from “the friends” he so desperately wants to interact with – it’s just so hard! The little boy who has never known a stranger and always has a hug for an upset classmate suddenly started becoming withdrawn and moody. He was giving up on this whole “social interaction” gig.

So when Aiden said he didn’t want a birthday party, my mama-heart sank and my mama-brain went into full distress mode. How could I fix this for him? How could I make him comfortable again? The Laundromat! My husband talked to the manager at a local Laundromat and after many reassurances that no-we-are-not-crazy, she gladly agreed to let us have a party in there. There was a lounge area, video games, vending machines, a tv, and of course, washers & dryers.

I worried what our friends and family would think when they got a birthday invitation to a Laundromat party. I prefaced it with, “Aiden is constantly pushed to adhere to “our rules”, you know, those of us who don’t have autism. For his birthday, we’re inviting you guys to jump feet first into his.” The reaction was amazing.

About 30 people showed up for the party: family members, family friends, kids with autism, kids without autism; they all had a blast. When Aiden walked in, his whole Self lit up. He started dancing and singing. Every time someone else would walk in, he didn’t necessarily go say hi, but he would grin and say, “More friends!” He was showered with gifts ranging from toys to a book on Laundromats, to laundry detergent and laundry kits, to quarters for future Laundromat adventures.  For that hour and a half, he didn’t have to worry about anything. We followed his lead, and saw the beauty in his passion. In his world.

Aiden has taught me so much about life, patience, and washing machines. He is Exactly Aiden, and the hard part for him is being Aiden plus Your Comfort Zone. He is sincere in life the way many strive for, but never get to because of imposed norms. While many people try to enjoy being someone or something that they’re not, he enjoys being exactly himself. I believe he taught everyone a little something at the Laundromat party. “Different” is in the eye of the beholder. It doesn’t hurt to stop and see the world from another perspective every now and again.

 

Tuesday’s with Autism – Back to School

We are t-minus two days away from school starting. I have decided that Aiden would think boarding school is a dream come true. He cannot WAIT to get out of our familial clutches into the arms of his public school. This is in large part in thanks to a great teacher and team, which, we all know, can make or break our all kids.

This year is the middle of middle school. We are “just” two years away from high school, but also WE ARE JUST TWO YEARS AWAY FROM HIGH SCHOOL!!!! Since we all survived our first year at “big school”, I have high hopes for this year (also probably because it’s August. By May, my spirit will probably be broken by the high hopes for summer. So it goes).

I realized that we are smack dab in the middle of his childhood via diagnosis. Instead of “he was diagnosed 8 years ago” I’m thinking more in terms of, “he has 8 years before he turns 22”. Time is funny if you consider hanging off a ledge while someone laughs and throws rocks at you “funny”.

So this year, I want to focus a lot on practical skills/life skills. What will he need when he’s an adult? Well, he will need to be able to walk up and order food, so I guess let’s work on walking through the lunch line alone. Bonus points for remembering your ID number to “pay” for your account. (Maybe send him with actual money? ehhh….Maybe next year?). When he’s an adult, he will need to know how to count money (probably? Are apps making that obsolete or less necessary? Should we look at budget instead. oh god. Must not panic). He will need to type but I still want to at least nail down a printed signature. Conversing with people. Tolerating chaos. Riding a city bus. Math on a calculator. Not muttering cuss words when people annoy you. Daily deodorant without us reminding him. Speaking up for himself. Slowing his roll on the meltdowns. Calming techniques. Raising his hand to answer a question. Really thinking about the answer rather than saying “yes” or “no” and walking away. Keeping a schedule. Spelling. Reading. Comprehension……you can see that one thought on growing up sort of snowballs. My self-soothing technique in this instance is knowing he has great “domestic skills”: laundry, simple things in a microwave, likes to help cook, enjoys doing his chores (usually), and is currently learning how to mow. So we have some tools slowly going into our toolbox. That’s good, right?

Those of you who have ASD or those with kids of teenagers/adults, what kind of skills do you think are important to learn as we get closer to adulthood? What sort of IEP goals did you have in place? Do you have any advice to pass on during this time of gentle transition? How much does technology influence your life and learning? Job advice? Basically, let’s hear it all: the good, bad, and ugly. Just like at the initial diagnosis, it’s time to rise up, take a big breath, and plan.

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.

Tuesday’s with Autism – Deal With It

A few weeks ago, I talked about being in my own, personal, sensory hell and sort of realizing on a new level what Aiden is living through on a daily basis. A)Whoa, what a bad ass and B) Ugh. My heart.

A lot of the challenges Aiden and others with ASD have are things us neurotypical folk also deal with. However, I like to say that Aiden just handles Life with autism-gusto:

Social Anxiety: Who of us haven’t had a healthy dose of this nonsense? The want for friends, but not knowing how to properly communicate that want. Finally approaching a new group and then just going full-on flop sweat, panic, and just wandering off (or pretend to mess with your phone). You maybe say something you didn’t mean then get even more caught up in your own head. You decide human interaction is overrated….until you try again.

How does it look for Aiden:  Standing on the sidelines, asking to be near peers then finding his “safe people” (teachers, adults, family), not speaking at all, wandering off away from the group to become a bystander, crying (usually away from the action, but sometimes right in the thick of it), interacting the “wrong” way, taking something from someone or knocking over blocks (thinking of his brothers here) to illicit an interaction/reaction, declining interaction when approached and invited because it’s all too much.

Shut Up and Let Me Think: I’ve definitely said it. According to google, TONS of movies have this exact quote in their scripts. I don’t typically say it calmly, either. I say it rushed and I’m probably frazzled. I like to call this A MacGuyver Moment (if you don’t know who/what this is, please don’t tell me. I don’t want to feel myself spontaneously age through my reading eyeballs). Things are LOUD and I just need a minute to regroup.

How does it look for Aiden: well, he is getting better at this, but when the whole world is turned up to a 10, it’s hard not to do anything to drown this out. Scream, Yell/”bark”, cry, deliberately knock something over, cover his ears, and my personal favorite, asking to leave because it’s all too much (thanks, therapists!)

Academics: Pick your least favorite subject, better yet, pick an upper level college course that makes your head hurt just by reading the course description. Then, go to that class everyday. THEN, watch every one else succeed pretty effortlessly. Walk out of there feeling good about yourself. Feeling smart. Feeling on top of the world. That is Aiden’s school life. The older he gets, the bigger the gaps.

How does it look for Aiden:  He has Call of the Wild on his bed for me to read to him, but he practices in books at a much lower level. It means we work on mastering the calculator and typing rather than handwriting (though I still have him practice). It means we work on Life Skills rather than knowing the parts of an atom. He can get down on himself, frustrated, annoyed. He sometimes walks away, has an emotional outburst, or refuses to try. Sure, it looks “spectrumy”, but haven’t we all done this?

In all of these scenarios, we all strive for positive reinforcement. We all want a smile from a peer, an invitation at the lunch table, a “Good job!” or “good try!” We all want validation and understanding. We all want compassion. We all want to know it’s okay to fail, because at least that means we are trying. And once we conquer whatever it is in front of us, we want the cheers and hugs and high fives. We want to feel connected and have a sense of purpose. Even if all we show is our “I don’t care” poker face, we all want to be accepted, sweaty palms, barks, and all.