Would I Be? Perspective.

If Aiden didnt have autism, would I be concerned that he didnt have a lot of friends? probably. Thats mostly because I always had friends, myself. I was a chameleon and could buddy up with any clique, growing up.

If Aiden didnt have autism, would I be concerned that he seemed angsty? no, Id chalk it up to 12.

If Aiden didnt have autism, would I be concerned that he wanted to hang around me allllll of the time? no, Id be elated (but also aware that we needed some space so he didnt turn into Norman Bates).

If Aiden didnt have autism, would i *really* give a lot of thought to his want to sleep on the couch rather than his room? No, Phoenix once wanted to sleep in the laundry room when he was nearing 12, himself.

If Aiden didnt have autism, would I worry at night whether or not he will ever be kissed, have an intimate relationship, get married, love? At 12?! NO!!

If Aiden didnt have autism, would I worry about him living with us as an adult? Not as much. As Chase has pointed out, I always tell Phoenix that he shouldnt (and doesnt) need to rush out and move away right after graduation.

Sometimes, we, as parents, have to be careful not to overthink What is Typical vs What is Autism. Don’t get me wrong, throwing autism into the mix is a definite game changer, but I try to consciously check myself when I start spiraling (and I do spiral. a lot.).

Chase has social anxiety, just like Aiden.

I *loathe* Walmart because the whole experience makes me a crazy, tense wreck sometimes more so than Aiden.

Phoenix doesn’t like large crowds just like Aiden.

Lief can get overloaded at the drop of a hat, just like Aiden.

August wants to be right by my side, just like Aiden.

None of us have autism like Aiden.

You know what Aiden does that I can’t say we all do?

He loves 100%. no judgement, all love.

He gives 100%, 100% of the time.

He tries harder than many others, even through tears and frustration. day in. day out.

He openly will convey his feelings, because he does not care if you are offended at his frustration with you.

He will battle cry scream in anger the way you secretly yearn to in an irritating moment.

He forgives and forgets.

He has “weird” passions unapologetically.

I have so many posts sitting in my head that are not about autism, because i promise, not all of them will be, but I cant stop thinking about this. It’s perspective. It’s angling askew just a little bit. During all of those hard days, I try to remember this, and reassure my Self that it’s all going to be okay. No matter what, we will all be okay.

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The Waiting Room

In a perfect world, I’d time Aiden’s therapies based around what parents I’m forced to sit with in waiting rooms. We started a new place a few weeks ago. On the very first day in the very first 10min, I knew that I would not like Mondays very much (we go twice a week). A mom answered her phone and very loudly started tell the person on the other line that he better get her something because it was her (say this part like you’re also a car motor revving) “mother f-ing birthday, man!” Then she complained about her mom and talked about a mutual friend of theirs who had been busted for meth. The other parent in the room glanced over at me. I noticed he had giant headphones on, and he was discreetly turning up the volume. Well played, sir. Noted.

We waited to get in here for months, so changing the day or time isn’t an option. If you were reading this, and even considering that as an easy solution, my guess is that you do not have kids with special needs. Private Therapies are our Manhattan private schools. Our community knows every therapist: where they are, where they were before, their credentials, and *everyone* will give you reviews whether you ask or not. “Oh you didn’t like Sal at ABC? Don’t leave yet, the place is AH-MAZING, but you need to ask for Bob.”, “Eh, be careful there, it’s good, but their billing is a nightmare” (<–that one is me).  When it comes to your waiting room cohort, you get what you get and you don’t throw a fit, as they say.

I’ve mentally sorted waiting room parents into categories:

The Loud Braggarts – They want you to know they’ve spent ridiculous amounts of money, have the best solutions, most supportive spouse and family, and their pet unicorn makes them breakfast in bed every day.  

The Loud and Chaotic – usually this involves a child barreling in while an exhausted parent follows behind trying to smile and pretend they *don’t* want to murder anyone. Typically, a shoe is missing.

The TMIs – I don’t want to know about your kids poop. I see you once a week on an uncomfortable chair. otherwise, youre a stranger.

The Whiners – aka the Doom and Glooms, Eeyores, and Debbie Downers. I promise there’s a silver lining somewhere, you guys!

The Snake Oil Believers – just sleep on your left side, eat pickles, and find a shaman – boom! “problem” solved!

The I Can Top That’s – Sports Parents know them. We know them. Everyone knows them.

The Therapy/Diet/Vitamin/Evangelists – it’s okay to love these things, but to try and sell them to me EVERY week can be much.

The Outsiders – the parent not in the chatty clique of parents that talk and talk and talk

The Silent and Sane – you wait, read your book, look at your phone, and leave. the end.

I fall in the latter 2 with a dash of I’m Silently Kind of Judging Your Nonsense and Really, I’m Just Here For My Kid. With two little brothers in-tow most times, I’m also the Please Be  Quiet Okay Fine Look at the Phone mom. We do what we need to do, right?

Autism Awareness Month

 

April is autism awareness month. Im going to be real honest here, and tell you I think this is silly. At this point, everyone is pretty aware of autism. A handful of shows feature characters with autism, it’s in the news, and most everyone I know knows someone with autism. Well, i guess 100% of people *I* know knows someone with autism, but I digress…

Maybe Im being a total curmudgeon about it because we are going through a rough patch. The patches of autism that you dont see on TV and that arent happy and embraced and plastered on awareness posters. We (yes, WE, all of us as a family) are feeling the poopy parts of Aidens stress and anxiety that comes with the diagnosis. We hear it on a daily basis  in screams, whining, wails, growls, and sobs. we see it in his tired eyes even when he’s had a full nights sleep, in the scratches and bite marks on his arms that come with anxiety/panic attacks, in the stress of our own faces because my GOD it can be stressful as big bad F word. We watch him go from happy and involved to foggy and sad at the blink of an eye. You can almost see his brain fall off track in that moment of discombobulation.

OH! I have a great example! Ok – tetris. The worlds greatest game on earth. You know when youre playing on level 5 and coasting through it like NBD? youre enjoying the music and talking to the people beside you like, “pfft, yeah i have no plans on saturday, why? whats going on?” You know, youre playing, but not REALLY concentrating. Slowly, you level up and it becomes increasingly faster. Suddenly, you realize youre pretty stacked. You hear the music increase and that adds to the pressure. I, personally even holler at whoever is near by to turn the volume down. I try filtering out what’s meant to overload you as a player. you start making gaps in the lines. You stop talking, tell everyone to shut up, break into a sweat (or maybe thats just me?), and you really try to concentrate on what the hell is going on in front of you. Then it happens: you cant place a block because it’s going so fast so you just watch it collapse in front of you, yell at the tv, and throw the controller (again, me? im an intense tetris player). Game over.

THAT. THAT is the autism we are in the midst of many days as of late. We are not on level 5 – the kind Joe Citizen is aware of. We are on level 15 – the kind you know only if you live with autism or are so damn close to it that you deserve a hug because you voluntarily put yourself there.

So maybe autism awareness month isnt silly, but be aware that there is a LOT of behind the scenes action you may not know about. You do not know autism if you watched Parenthood (but my god, great show, right?). It’s a spectrum disorder. That spectrum can swing on a daily basis, and sometimes we have to take it like an addict: daily, hourly, minute by minute. Be aware of THAT when you see a kiddo (or adult) struggling. Take a deep breath with the rest of us and know that they are trying and having a hell of lot harder time than you are as the bystander witnessing the unravel.

I am the best tetris player i know. this is the cocky, gods-honest truth. Even when I yell, “im done!” and stomp off, I pick up the controller and try to go farther. Such is life with my beautiful, amazing, kid. ive got this. WE’VE got this. – See you on the other side of 15.