Monday, February 26, 2018

When they leave

People can really suck when it comes to all things autism but you probably knew that already.  The worse thing is when they leave. Parenthood stuff is tricky enough.  Sprinkle some autism on to it and watch what happens. People that were a constant in your life start to scatter like roaches when the lights get turned on.  If you are sitting here reading this and think "That's not true.", you are one lucky person.

Because I haven't met an autism or special needs family where this that hasn't had this happen to them yet. So much runs through your heart and mind when they leave.

When they leave you don't even realize right away that they are gone.  It's such a subtle slip into a new reality.  You find yourself very overwhelmed with Autism, therapies, IEPs, school stuff, and just life in general that you find yourself thinking "Hey, I haven't heard from "So and So" in ages." If you are like me, you blame yourself for that.  That you got so wrapped up in all things Autism and your kids that you killed that friendship.  The invites dry up.  The phone calls and text messages don't get returned.  You kick yourself for saying "No" one to many times for gatherings "because Autism".  You find yourself going over conversations in your head where you went on and on about Autism and you are kicking yourself for not just shutting up and asking about them.

Of course, it's not just us screwing it up. I'll put some of this on them too. When they leave because they don't know what to say to us, that kills me. I don't need you to know what to say because I don't even know what to say. I don't need you to "fix it".  I just need you to be there.

When they leave because just being in our presence is uncomfortable for them, what the hell is that? Do they think that they are are going to catch Autism like a cold? I've notice this happen with people we know and even out in public with perfect strangers.  They notice, they give us "that look" and they suddenly get the Hell out of dodge, or the playground or to another table at McDonald's. You think I didn't notice? Trust me, I did.



I think the worst part when people disappear from your life with Autism is that they are usually the very person you want to call to confine about this happening to you. You still want to lean on them because you are hurt even though their disappearance is what hurt you.  Does that make sense?

The longer we live on "Autism Ave", the smaller my circle of friends has become and 90% of them usually have a #TeamQuirky kid of their own.  So they get it if it takes me five hours to answer a text message or have to cancel plans again "because Autism".  My Kiddo is rapidly growing and he's no longer the tiny hyper toddler with the chubby cheeks and big blue eyes whose cuteness could bring about a few chuckles and a smile.  Now it's "What's that dude doing over there scripting from Blue's Clues?" Maybe because so many leave, they forget these kids grow up to be Autistic adults.

And I'm also sure some left simply because I probably pushed them away.  I know my boundaries with stress but I am really shitty at expressing that I am at my limits. I use sarcasm when I should have used compassion. I rolled my eyes when I should have just listened and give the person some of that eye contact that BCBAs are ALWAYS going on about.  I lashed out and done the worst offense, tried to top their pain with the martyr Olympics.  "Oh, your kid talked back to you? Well I'd just be happy if mine could talk at all!"  Ugh, why do I do that?  Ain't no trophy for it, so it's just fecking stupid.

And if you made it to the end of this post, I'm glad you didn't leave. So thank you for that.

You want to leave all this?  Your loss. 


Thursday, February 15, 2018

To Explore Strange New Worlds: A book review.

Full disclosure, I actually don't enjoy reading books about autism. I know, I know.  Very ironic seeing as I write about it a lot. It takes a certain something special to make me want to do so.

Full disclosure, I married a Trekkie. So when I was approached to read and review Elizabeth W. Barnes' new book "To Explore Strange New Worlds: Understanding Autism Through a Star Trek Lens, well, you have my attention.

You don't spend 17 years with a guy without some of that Star Trek rubbing off on ya. 


Autism and Star Trek. Now if you are a fan of the various series, it kind of makes sense.  There are several characters on the show that display characteristics similar to ones that autistic people display.  Spock from the original series is usually the first one that comes to mind for most people. However, there are also many different examples of diversity, inclusion, and acceptance displayed throughout the various series and Ms. Barnes leads you through it.  Even if you are not a super fan, it's still a fun read with plenty of background information on the plot lines so you can follow along.  (And lots of direct quotes because scripting isn't just something our kids do! We do it too!) 

What I loved about this book foremost is how the author and her child really connected through a mutual love of all things Star Trek.  If you are an autism parent, you know once your kid likes something, you are about to become an expert on it too.  You also know if the thing they like is something you love, it's a bonus!! I think it was very smart of her to take this mutual love and run with it to teach him various things about the world and his autism in general.  That's just solid parenting advice right there. Using what they love to model different challenges they face in life. Ms. Barnes even points out that are many different types of TV shows one could use in a similar way.

She includes a very extensive and detailed list of episodes that cover a wide variety of topics such as learning to read facial expressions and social cues, bullying, anxiety, communication, difficulty with transitions and changes, meltdowns, stimming, and intense interests and fixations.  She also includes talking points and questions for each one that you could use to have a conversation with your loved one with autism to go into more detail about each topic.

All in all, an entertaining way to look at autism, neurodiversity, and relationships.  If you are looking for something less "Sciencey" and more "Sci Fi", this might be the book for you.  Order it here or through your favorite book store.  Make it so!

Mama Fry's Book Club for those who spend a lot of time in therapy waiting rooms pick. 


(Full disclosure. I was provided a copy of this book and compensation for my time by the publisher. My views of it are my own.)


Wednesday, February 7, 2018

Quirky talk with Uncle D.

Time to meet another member of Kiddo's squad.  Allow me to introduce my brother, "Uncle D".  Technically speaking, he's the real writer of the family.  (Unlike me and my one trick pony topic of autism.) I thought it would be interesting to explore the ripple effect of autism with the extended family and he was game/felt guilty for all those times he let the see saw slam down to the ground by getting off of it suddenly causing me to land on my ass.  (Not that I'm bitter about that.)

So take it away Uncle D!



What is one thing about autism has taught you?

"I guess the simplest answer is don’t assume anything. You have that line that if you’ve met one person with autism, you’ve met one person with autism, and that certainly seems true. 

As a teenager, I suppose like a lot of people my first encounter with autism was through the movie “Rain Man,” which told me autism meant a fixation with odd things, being withdrawn from human contact and an ability for astounding math parlor tricks. And for some people that’s true. But from firsthand experience with Kiddo, I now know that’s only a portion of the population. Kiddo shows the fixation behavior, but he’s not withdrawn at all. He’s a very affectionate boy, one who certainly knows how to love and feel loved. 

And then I think of one of my son’s old Cub Scout buddies who has autism. He’s a sweet-natured kid, a little socially awkward but otherwise well accomplished and you might not immediately know he’s on the spectrum; I know I didn’t. Some of my old friends have children with autism, and I follow their stories on Facebook, and I’m struck by the wide variety of experiences. The one common thread is every parent just wants their kid to have the same shot at enriching experiences; i.e., just like parents of neurotypical kids."

How did you talk about autism and special needs with your kids?

"My kids are just a little older than Kiddo, so they’ve grown up with him, and thus autism has been something we’ve gradually discussed as my kids got older and could understand more. The one thing I’ve found is if you discuss these things in a matter-of-fact way with your neurotypical kids, they’ll treat it in a matter-of-fact way. If you freak out, your kids will freak out. 

If you explain calmly something like, “Well, people with autism have something different with their brains, so sometimes they’ll say or do things we don’t understand,” they’ll accept that the same they’ll accept just about any wisdom from a grownup explaining the world.

I think the most important lesson is even though we make it clear Kiddo has special needs, that doesn’t mean he should get “special” treatment. He’s still a kid who likes to have fun, just like they do. We’ll laugh about some of his behavior, but with a sense of inclusiveness; we laugh about goofy things that all members of our family do, including ourselves. Kiddo might not be able to play with them in a way they’re used to, but he’s not a delicate vase to be treated at arm’s length either." 

What kinds of things about autism would you want to know more about? 

"I think the questions I have are probably the same as parents of children with autism have, though far less detailed, since my experience of it is mostly from family visits and reading your blog. 

I guess the biggest thing I would ask for is patience. We’re never going to know as much about autism as parents of children with autism do. We’re bound to ask blindingly obvious questions. I’ve learned some of the lingo, and learned to use terms like “neurotypical” in describing my kids, but I think it’s important to remember if a relative or friend says something like “normal” or “regular” instead, it’s almost never meant to give offense; it’s just a puzzled groping through an unfamiliar language. 

I have an advantage in that if I want to know what you’re going through, I can read your blog. So I’m probably more aware of the details of struggles you go through then I would be otherwise, because discussions of, say, public bathroom difficulties don’t normally come up at family get-togethers. I really would recommend blogging for autism parents, even if your audience is just a half-dozen people. It gives people a peek into your life, good and bad, and helps us be sensitive to ways we can help (or at least not hurt)."

What’s the one thing about autism that surprised you?

"I guess the biggest thing is what I mentioned above, which is the experiences of autism vary so greatly. I get annoyed when terms get used a bit flippantly in casual conversation in society, like calling someone “Aspergery” when describing any persnickety behavior, since we all have our quirks. But given how broad autism can be, I understand the instinct. 

In some ways, however, maybe the broadness of the spectrum is good. Autism is a label that forces me to look deeper. I can’t pretend to know much of anything about the person with autism until I actually meet him or her, just like I can’t know about anybody else in the world." 

You work in media. Does having a nephew with autism change your perspective and/or viewpoints about disability? Do you feel that’s crossed over to your work at all? 

"It’s certainly made me more aware of how common disabilities are, particularly autism. It’s also made me a bit allergic to “pity party” stories, in which anyone with a handicap — or their caregivers — is treated as a sinless hero just for waking up in the morning. Remarkable activity deserves to be highlighted by describing it, but it doesn’t do people with disabilities any favors to treat them as inherently morally perfect people. It’s condescending, and makes them more difficult to relate to as a fellow human. If I were to write a story about Kiddo, it wouldn’t be filled with purple prose about how he’s a angel. It would tell people about a kid who loves singing at the top of his lungs, enjoys playing with his dogs, can get cranky when tired and is working really hard to adapt his social behavior to the wider world. He’s a real person, not a statue. 

On a far darker note, we recently covered a horrific crime in which a local teenager has been accused of killing his parents, sister and family friend. Neighbors said the teen had autism. One of our followup stories was on autism and violence, since people naturally thought of Adam Lanza and the Sandy Hook shooting. 

It made me instantly nervous, because I knew if we ran a half-assed story on this, one that essentially left open the notion that autism makes kids into ticking time bombs, we’d be quite rightly crucified by the autism community. 

At the same time, it wasn’t something that could be responsibly ignored. Even if we refused to address the topic, readers certainly would. Again, most people outside this world don’t understand autism. Refusing to discuss it would essentially suggest we were hiding something. 

We had an excellent, sensitive writer take on the topic. He was able to demonstrate there’s certainly no predilection toward violence among people with autism; the numbers show they are less likely to be violent then the general population. But at the same time, it’s not unheard of; while cases of murder were mercifully rare, there certainly are cases where young men with autism have acted out violently. In other words, people with autism are just like people without autism; you can’t make assumptions about them one way or another. 

Some readers were still very upset; others were quite appreciative (you can’t please everybody). I was only tangentially involved with the story, but if I had seen gaping problems with it, my family background would have led me to raise all sorts of red flags before we ran it."


So there ya have it.  He's not half bad and Kiddo likes to call him "Uncle Pizza" because that's what we usually eat when we are over at their house. He also lets him vacuums his house when he's watching the Kiddo for me.  Yep, he knows how to show him a good time.

True story. This is the photo ID that comes up on my phone when he calls me.  Uncle D is a HUGE Star Wars fan and was aghast that I married a Star Trek fan.  I don't think he ever got over it.