The Show Must Go On.

"The Show Must Go On. 
The Show Must Go On. 
Inside my heart is breaking
My makeup may be flaking
But my smile, still stays on." 
Queen

Kiddo had his IEP the other day. I'll get right to the point. I didn't want to go. I didn't want to deal with it. I didn't want to prep for it. I didn't want to hear about goals or benchmarks. It's not that I don't care, it's just that I am so tired.

Couple with this with a yearly review from the state agency, "Perform Care". Which if you are a resident in New Jersey, you will speak to quite a lot under the guise of getting help and services for your kid but only if you are willing to be a giant pain the ass to follow through to get it.  "Perform Care. We barely care or perform." might as well be it's slogan.  I spend an hour on the phone with them to once again answer a slew of questions of what he can't do milestone wise and what damage he can do behavior wise.   I listen to an employee tell me all the stuff they can provide if only he was "more severe" or "less severe".  It seems if your child is middle of the road autistic like mine is, don't hold your breath that you'll get actually help.

Gee Kiddo, it seems you have the wrong kind of autism.  Who knew that would be a thing?

It's not just a physical tired that I am talking about here. I haven't had a full night of sleep since the doctor said "It's a boy!" at the Kiddo's birth. All parents walk around in a bit of fog, especially those of us in #TeamQuirky.  It's not fun but your body gets use to it.

What I am talking about and trying to come to terms with is how emotionally tired I am of all this.  I'll say it. Autism is tough task master and it often makes me it's bitch.  Kiddo is fourteen. He's been in school since the day after he turned three.  So we're talking a decade's worth of IEPs and special meetings with the team.  Plus the year and half before school with Early Intervention and all the service plan review business. At this rate we could wall paper our entire house ten times over with all the paperwork involved.

And I'm just done and the worst part is I know I can't be.  There is no end to this. Not till the day I die and even that I can't really do because, well, autism.  The show must go on. There is no understudy.

Also, to be perfectly honest, I am hitting a wall with Autism in general. Not just my Kiddo's special brand of it.  I know this is an issue of my own making.  Becoming a blogger that writes about one subject was eventually going to bite me in the arse.  I just had no idea how utterly steeped in autism I would become.  Seriously, I cannot escape the stuff.  The majority of my life even outside of my Kiddo is just autism related stuff.  Other families that I know, teachers and therapists that I have become friends with, sites that I follow, podcasts that I listen to, writers that I read, stuff on social media just has a crap ton of autism and puzzle pieces slapped all over it.

I have observed a common theme for most of what I see too.  Struggle. There is just so much hustling to make things work for our rapidly growing kids.  With this IEP in particular, the theme of rapidly growing was forefront.  Job training, independent life skills, improving social skills, and working on coping skills are all being thrown at us.  I mean, we're ready. I think. This is what my professional background is in.  I've been playing the part of "job coach" long before the Kiddo.  I know my lines.

But can I find it in me to sell the scene? Because I am struggling to get to that part of me that makes me believe that we can do this.  That he can do this.  That I can be both his duet partner or his background chorus girl.  Whatever he needs, I will try my best but I am so damn tired and so scared because the older he gets, the more I see how the world just seems to forget our kids grow up.

Because every day lately has felt like I am in a play that never ends. Even as I was getting dressed to go into the school because the dress code is not "pajama casual", it was really hard for me.  I caught myself thinking "Why can't we just be shitty parents and blow this off?" Of course, as soon as I thought it I realized how stupid it was.  Blowing this off won't make it go away. The audience have bought their tickets. The curtain is going up. "Places" will be called and you can bet your arse I will be in mine. (Back to the wall, middle of the table, face to the door to greet any sudden cameo appearances like special guest stars "Speech or Occupational Therapist")

But good gravy, this was the year I struggled to pull off this performance of "Involved and Active Parent".  It kind of freaks me out that I felt this way to but I am hoping that by acknowledging these feelings I can get over the hump of "meh" I have been feeling about autism as of late.

After all, there is still more story to tell.  On with the show!

"I'll top the bill
I'll overkill 
I have to find the will to carry on.
On with the show. 
The Show Must Go On." 

Thanks Kiddo. I've been feeling a bit Autism with a side of "meh" lately.  This helped. 

The Three Types

I think we can all agree that unsolicited advice usually stinks. I think we can also agree that unsolicited advice often comes from people that don't have a flipping clue.

And sometimes it's from people who you thought would have your back from the get go.  Family.

Yep, we're going there.  Let's talk about family and the ones who seem to make the effort it to judge the crap out of your parenting, your kid, and your whole situation.

 It follows a simple formula.  Kid starts diagnosis process, advice and opinions coming flying at you.  There seems to be a few certain sub groups of these less than helpful folks.

1) The Deniers. There's nothing wrong with your kid.  Your kid was an early walker, everyone knows that means a late talker. Cousin Jimmy didn't talk till he was five and he's fine.  Mind you Cousin Jimmy is living in his mom's basement but he's got a job now. Stop fussing! You talk for them too much.  Back off your kid. You hover too much!

2) The Accusers. Well you didn't follow a micro biotic all vegan. no soy, no gluten, no dairy diet while you were pregnant. You bought that house that's too close to the cell phone towers.  You used a microwave to heat up leftovers! You didn't follow a delayed vaccine schedule? You didn't breastfeed or breastfeed long enough.  It's all "You didn't. You. You YOU!!! Look what YOU did!"

3) The Fixers. "Oh, you just informed me of your kid's autism diagnosis?  Allow me to send you every article or meme that I have ever come across on the subject online. Anytime I see you, I will never ask you about any other part of your life other than autism.  I will be puzzled that you didn't follow the advice of the twenty different crack pot articles that I sent you.  I was HELPING! Let me fix it!!!!! The diet! What about the diet?? I sent you that email last week. Why aren't you doing the diet???"

The fact that the majority of these folks that do these behaviors are related to you tends to make this a tad more hurtful.  I can bet you dollars to donuts you have all three of those types in your family.  So even if you go to complain about a "Denier" to another family member, there's a good chance you might be talking to either an "Accuser" or a "Fixer".  You never get a freaking break!

I think this is why a lot of autism families start creating their own families.  I call it the "Autism Mom Mafia".  Seriously, I could walk into a room full of moms with autistic kids and say "Someone is giving my child a hard time." and every single one of them would take off their earrings, pull out bats and brass knuckles and say "Where are they?". No questions asked.  That's freaking loyalty, Fries.  Cause they just get it.  If my son is struggling in school with something, am I am going to call the family member that likes to remind me that I didn't breastfeed my kid and this is all my fault or the mom who knows to get poop stains out of anything.  I have moms I can and have texted at 5 AM because I know they are up already for the day with their kid and they'll immediately reply back "Oh, you got to sleep in today. Lucky!"

I'm not saying go blow off your entire family.  Far from it.  You can't change them but you can change how you react to them. What you choose to share with them.  What you are willing to give them and most importantly, you know know how to lay down some boundaries like a mofo.  Sadly, this is a process and doesn't happen overnight but you can make progress towards a better relationship.  Heck, you can do that.  You work on goals with your kids all the time. Who's to say that Grandpa Denier or Aunt Accuser can't benefit from a nice behavior intervention plan?

So what do you do with a "Denier"? Well, keep living.  Keep doing your thing. Eventually they will either sort of catch up or fall behind. It's sad if they do. That they couldn't be what you needed them to be or what you thought they were but let them kick rocks. You have enough going on. You want to carry them with you to? Didn't think so.  It should be noted that this group is often an older generation and one that is completely in the dark about all things special needs.  I give them a little slack.  Why? Simply because they come from a time where "those kids" went away. Sent to live in group homes and institutions.  They didn't grow up with these folks around. So yeah, it's a bit of a mystery to them.  However, once you start dropping knowledge of them and they still don't come around? Boy, BYE!

An "Accuser"?  Redirection is your best friend! They want to remind you of the time you let your kid eat Red Dye? You remind them of the time their kid ate a french fry off their minivan floor and still lived to tell the tale.  I mean, if these folks are family there is bound to be even better dirt on them that you can remind them about.  "Oh, you want to talk about why I let my kid co sleep?  How about the time in high school you told your mom you were staying the night at my house when you were really co sleeping with your boyfriend in the back of his van after a Metallica concert?"

Now nothing fixes a "Fixer" like some good old planned ignoring. You want to tag me in every meme on Facebook with a puzzle piece on it? "Oh you did? I didn't see it.  Facebook algorithm strikes again!" You want to email me every article you see about Jenny McCarthy and diets? SPAM FOLDER,BABY!!!   You want to tell me at every family gathering about the YouTube clip of the latest cure du jour? I will give you resting bitch face and say "That's nice." and change the subject.

Moral of the story folks? You have autistic problems and they can only give you neurotypical solutions because that's all they know.  Yeah, it can be a pain but it's just what it is.  You can make the choice on how you handle it though. Personally, I am going with humor and a side of fries.

Kiddo will always be my "Ride or Die" best bud.

Autism around the clock.

Fourteen years living with this Kiddo and he's still finding ways to shock the crap out of us.

Our latest surprise. Kiddo knows what time it is but not by looking at a watch or the clock on his iPad. It's because he keeps a running clock in his mind.  Seriously, we figured out that the Kiddo is forever counting seconds, minutes, and hours in his head. Non stop.

My husband was the first to notice this. He would be outside working on the lawn or whatnot and Kiddo would come outside. He'd ask "Hey, do you know what time it is?" and the Kiddo would always know.  The first few times we thought it was he was seeing a clock on his way out of the patio door but nope.  He would wait a bit and then ask him.  Sure enough, he would be mid jump on the trampoline or swinging in the hammock and he would just rattle off the time.

And he would be right.

I honestly couldn't believe it until I did checked it myself.  I was brushing my hair and he was just sort of stimmy/flappy in the bathroom door frame scripting. Not a clock in sight.  My phone was in my pocket. I didn't even have on a watch.  I asked. He answered and I looked at my phone and he was right.

And we're not talking like within ten minutes or so. He is ON. THE. NOSE.  The other night my husband asked him and he changed his answer mid sentence.  Why? Because it was going from 6:59 to 7:00 PM.  Hubby pulled out his phone to check and watched the clock change from 6:59 to 7:00.

HUH???!?!?!?!?!? How the Hell does he do this??? He's always had a thing for numbers.  It's why he's always loved Thomas the Tank Engine trains and their assigned numbers. He can remember every hotel room we've ever stayed in and the year. He can rattled off at the movie theater which flicks we've seen in each theater.  He loves math at school. So I can't say that I'm altogether shocked per say but at the same time I'm just sitting here stunned all the same.

And you know what I keep saying to my husband?  "HOW DO WE MAKE THIS A MARKETABLE SKILL?????"  Because while it's kind of cool that he can do this, it's also another example of the quirks of autism.  Yeah, great that he'll never be late because he'll always know the time.  We also now know why he's often slow to respond to questions. It's not just processing what is being said to him. He's doing that WHILE being a walking clock.

There's no explaining or telling him "Hey Kiddo. No need to keep a constant clock running in your brain.  We're good."  He NEEDS to do this. This is just how his brain works.  I can't get him to change his brain anymore than he could get me to change mine.

But like I was saying before, it's just one of those things he does.  Can't tie his shoes but he can keep a running clock going in his mind.  I'm not sure what this type of skill can do in the long term or will just be another one of those #TeamQuirky things of his.

If I have learned two things from this it's 1) He will never stop surprising me. 2) It's also always time for another side of fries.

Now we know why he likes to sleep with a clock. Here I was thinking he just wanted to be like Flavor Flav. YEAHHHHH BOYYYYYY! 

Inclusion for all! (But only for a little while.)

Inclusion. The first twelve years of the Kiddo's education was in the school district. He went to the regular school just like all the other kids in our town. Now granted he would spend a majority of his day in a self contained classroom filed with other kids with special needs.  He was also  in and out of that class to spend time with his fellow neurotypical peers. His elementary school was BIG on inclusion and we were pretty happy about that.  The kids got to know him and all his quirks.  They loved that he loved to sing and would do so with him.  It was nice to be out running errands and some random kid would run up to say "Hello" to him. I found it heartwarming and it made me think "Yeah, this next generation is going to be the one that gets it.  They are just going to be so use to all things Autism." 

So needless to say, when we realized he had to leave the school district for a different educational placement, I was really worried about the inclusion factor.  I mean, in some ways it's great that his current is school is nothing but autistic kids.  No one cares if some kid is flapping because they might be too busy doing their own stim.  In a lot of ways, Kiddo has become more interested in the other students for the first time.  Maybe it's because he can really relate to them in a way he couldn't before.  

The fact remains that unless we see one of his teenage cousins, he isn't hanging out or spending any time with neurotypical peers.  At all.  I feel really worried about that but I also can't help but feel it's a bit "Out of sight,  out of mind."  We left the in district schools and what I feared would happen, happened. We are totally cut off from that whole community now. I wonder if the kids forgot about him or if the parents forgot about me.  I get it.  Their kids and lives get busy but they are busy “over there” in Neurotypical Land.  Since we don’t travel those parts anymore, are we just a memory in yearbook or a picture that gets tagged on Facebook. “Oh, remember Kiddo? Remember that crazy mom of his? She was fun to sit next to at the PTA meetings." 

What happens when there are no more chances for inclusion with your peer group? I'm hear to tell you. The older you kid gets with autism, the less "stuff" will be out there for your rapidly growing kid.  Not gonna lie, that kind of freaking sucks.  There's just very little that both neurotypical and autistic teens can join together.  There's a very distinct line.  Unless a lot of prompting and organizing goes on in the background by adults, these typical teens are going to be busy doing what typical teens do.

Sure, you see the odd "feel good" story about the basketball coach that put the autistic teen in for the last ten minutes of a game and everyone cheers when the kid makes a basket. It wouldn't be prom season without some viral photo or video of a typical teen taking one of our quirky kids as their date.  I'm not knocking on either of these things. Inclusion is inclusion and I'm a inclusion junkie. I'll take it where I can get it.  I'm just asking, can't their be more?  Of course, I can't figure out how to make that happen. I also don't know how much I can push that whole thing with my Kiddo. He does has his limits with those wacky neurotypicals.

This shouldn't be hard to do but for some reason, it is.  Life just gets so busy for every family. Even our one "go to" NT family isn't one we get to see anymore.  Other than an occasional "like" on something one of us posts on Facebook, I don't hear from them. How many times can I call, text, or email for a get together and hear silence on their end? Okay, I get it. It was cute when the Kiddo was small. Now that he's huge, not so much so.

I guess what I am trying to say is what's the point of inclusion if you only do it for a limited amount of time? How can we go about fixing this?  I'm almost at that point where I don't want my Kiddo to have only a viral moment here or there.  He should have access to those people all the time. They deserve to access to my Kiddo all the time. He's freaking awesome.

Of course, I might be bias. ;-)

#EndAutismInfightingNow

"Why is everyone screaming about Jenny McCarthy and what's this #EndAutismNow hashtag thingie and oh for feck's sake!" said the tired middle aged mom an autistic teen scrolling through Twitter one morning.

And we are at it all again. If there is one thing I think the entire autism community can agree on is we fight with each other. A LOT. Like we could medal in fighting. It seems Jenny McCarthy has a book coming out or is helping another autism writer out or something. It was hard to find all the details out when all I could find were comments and articles of people wanting her head on a platter. Anywho, she's uber involved and even recorded a "call to action" video about the book's release and it was a clusterfuck. Mainly due to the hashtag she teamed with it, #EndAutismNow.

Jenny, oh Jenny. Girl. GIRL. Now I get your kid is like sixteen so you have been doing this autism thing for a while now but Honey, have you not noticed by now that attitudes and feelings about and around autism have changed? You're on social media. You can't tell me you haven't noticed. I know I've seen it and I know just by seeing things and reading about them, it's changed a lot of my views.

Okay let's start with the nitty gritty as to why this hashtag kind of sucks. (There's just no way I can say this nicely. Sorry, I'm not the fluffy puffy autism mom that slaps a puzzle piece on anything that doesn't move.) Here are my exact tweets on what I had to say about it below. (Are you following me on there? @FrenchFryInc)

"Here's the real issue w/ the #EndAutismNow thing. There's the HUGE population of autistic people that isn't be supported. That isn't being employed. That isn't finding safe and affordable medical care/housing.

Then you have family/caregivers that also need support/resources/ for lack of better words, HELP. They're being ignored too by this dumb hashtag. they're also being ordered to be some new book's free PR team. Like they didn't have enough to do. (This in reference too her asking people to approach bookstores to hold events for the sale of said book for her.)

So two sides are at each other's throats because no one can sit down and actually figure out a way to be supportive and empathize. Folks, I'm here to tell you, you can do BOTH! Honest!

But if you are making me pick a side, sorry Jenny and Crew, the #EndAutismNow hashtag is insulting. To autistics. To the ones that love them. The ones that actively support each other. Pro tip. Hire a few autistic people to consult your social media."

Now before the rest of you all call for my head to join Jenny's on that platter, I'm not hating on her but I'm really done with this "OOooooooo! Autism is a big scary monster." fear mongering shit. Because I'm not just reading that and thinking in general terms. I think of my Kiddo. My Kiddo is the big problem that needs to be ended? Really?

And before you all go "BUT! BUT!! BUT!!! Prevention for future families from having to deal with this!!", yeah, I hear you. I get it. This autism stuff is challenging. I'm not denying that. (See, empathy to both sides! So easy to do!) However, half the challenging stuff gets MORE challenging when the current autistic population keeps being ignored. As a community, we still sadly lack the resources and support that is so desperately needed for a rapidly growing population. My Kiddo needs a job, not to be demonized by the general public when they see thinking like this. That he is a burden to be had.

What makes this all the more exhausting? It's most gas on the fire of fighting. Sometimes I chuckle when I see folks saying things like "Oh the comment sections on articles about politics are so nasty." Oh Bitch, you clearly ain't seen any given internet thread during Autism Awareness Month. We can't even all agree on a damn awareness color. (I still suggest we forgo colors in favor of things like fringe. One, it's cool on any clothing. Two, sensory input for the win!)

Jenny, your son is sixteen. Here's an idea. Put him on your social media team. Honestly. You're a middle aged lady like me. You need some young blood on that side of things. I sometimes run things social media wise past my teenage niece and she explains things to her old AF aunt.

Like can you imagine if you just shifted your platform to what needs to happen NOW as opposed to what hasn't happened or might not happen. We know there are people here now that could benefit and wouldn't that help us figure out what we need to do in the future when or if more come following? Isn't that more of a win/win here?

And the funny thing is, I'm typing this and knowing that as soon as I press "publish" on this piece, I am opening a Pandora's box of possible trolling from either or both sides on this. Pffft. Whatever. I have to get this off my chest. I'm tired of the infighting. I am tired of neither side showing any empathy or even trying to come up a solution of what could work. Maybe even just an acknowledgement of "Hey, yeah. We are both very different." Just stop the fear stuff. I'm so flipping tired of it.

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There's no crying in baseball.

If you have ever found yourself crying in your car, I've been there.

If you have ever found yourself crying in the shower, I've been there.

If you have ever found yourself crying as you load and unload the dishwasher, I've been there.

If you have ever found yourself crying and getting mad at yourself for crying again, I have been there.

There may be no crying in baseball but there sure is in Autism.

I guess Tom didn't get the memo. That's okay. He was busy riding on The Polar Express nightly. 

We have hit our annual August Angst.  ESY aka Extended School Year aka Summer School aka "Don't you dare call it camp or I will cut you" is winding down next week.  We're staring down a long month off.  Yes, I've been a member of Team Quirky long enough to know what I have to do but it's still a daunting task all the same.  Sure, we'll have little schedules each day to follow and events and activities but it's not nearly the same as having that school routine. 

And I swear each year it gets harder.

And I have to remind myself it's not so much that it's harder it's just a different set of issues that we have to get use to  and once we do, it will be fine.  "FINE!" she says as she weeps hiding in the laundry room into a mini bag of chocolate chip cookies that's she's inhaling.  (Yes, I eat my feelings and my feelings are delicious!)

I mean, we do have some big plans in the middle of this.  Our annual vacation. This will be trip number six to this resort because we're Autism Vets. We know what works so we stick with it!  My husband and I also really like it there and enjoy tagging each other to take on Kiddo wrangling duty so they other can get a break.  Like my hubby goes on hikes or to visit some dead President's home and I do something better like GET A MASSAGE AT THE SPA!

Kiddo's trip will be the following:
Get up and Mama Fry will remind him ten thousand times to be quiet because people are sleeping.
Eat Breakfast.
Outdoor pool.
Lunch.
Indoor pool.
Dinner.
More pool followed by some pool.
Bed.
Remind us as he is falling asleep that he wants to go to the pool tomorrow.
Repeat.

But I digress. That's a week we have a plan and part of me feels good knowing for a week we have stuff to do to keep him busy and engaged.

Except Autism comes on vacation too and while he's usually pretty good on vacations (I swear this kid lives for sleeping in hotels.) it has gone south now and then.  So maybe I'm worrying for no reason but I'm also no dope and I'm not going to pretend there's no chance that will happen because puberty has moved into this house with a vengeance. It also brought it's pal Anxiety and let me tell ya something, I really wish that bitch would leave my Kiddo alone.

I don't know what's going on with myself lately but I'm starting to think I'm having teenage angst and anxiety, the sequel.  Kind of surprised that the husband keeps coming home each night knowing what waits for him.  An anxious Kiddo and wife combo. I must be a really good cook or something. 

But I've been in this place before and I will surely be there again. I guess what I'm trying to say is "Yeah, stuff is a bit shit right now but I'm hanging."  So if you find yourself thinking the same right now, know I am right there with you. 

#TeamQuirky 

You can miss so much.

I was tooling around on Twitter this morning (@FrenchFryInc) and this tweet caught my eye.

"How do you help a friend whose child just got an Autism diagnosis? All I can do is speak about my personal experience and listen to her. Any advice?"

I was quick to point out to her that she pretty much answered her own question.  Make sure the newbie mom knows your thoughts are just that, yours. Plus, listen to her. I think she knew those were both good ideas but also wanted to do extra.

Which is something I can totally get.  Long before this blog and being "Mama Fry", I was pretty open on my social media that I had a kid with autism.  So every now and then a former classmate of mine would message me with "Welp, we just got diagnosed and...yadda, yadda, yadda, autism, etc..." I found myself simultaneously wanting to hug them, high five them, pour them a drink and drop all the knowledge and information I had on them at once.

Because I had been there. I knew how scary and overwhelming it was. I knew that what it was like to have a love/hate relationship with Autism. I knew that playing Dr. Google was a REALLY. BAD. IDEA. I knew how to butter up a receptionist at a local doctor with a long waiting list to get your kid in just a little sooner to see them. I knew how it would both bring you to your knees again and again to read all those reports the "experts" wrote on your kid. I knew how it would lift you higher than a mountain to see your kid prove them wrong.

I knew that sometimes a good cocktail could be made with Kirkland Signature Vodka and some Crystal Light drink mix in a Lighting McQueen cup. I had developed a very unique skill set.

But if there was ONE single piece of wisdom that I could narrow it down to. One mantra to repeat for now and forever it would be this.

Calm the Hell down or you are going to miss so much.  

You will never get the do over you are craving. All of this will be gone in a flash. Suddenly you will be me and you will realize that you have missed so much.  You don't get this back.  Yes, some of this you wish you could have skipped all together.  (Like the whole little to no sleeping thing.  That can fuck right off.)  But wishing he was little again and we could have at least tried some of the things I was so sure he could not do, I'd give anything to have that chance.

I see these newbs writing these gospel long descriptions of what their kid is doing or where they are at and I'm just like "Yeah but can't you just see them as 3?"  Cause being a "threenager" is a very, very, real thing. No matter what the neurology.  Let me tell you something, the real mark of the Beast isn't 666. It's muthatruckin' 3. Yeah, autism has behaviors and behavior is communication but sometimes your kid is just being their age.  Just chill on this.  Trust me on this one.  Even though 3 can be evil, it can also be damn cute.  Don't miss that. Before you know it you will have a great big old man child with hairy legs, as tall as you, and shoes bigger than your own.  Enjoy each age, each year,  even when they resemble Satan on a bender.


This isn't a Netflix series. You don't want to binge this stuff. Just enjoy each episode and side of fries.

Autism by proxy.

Today I had my annual mammogram. A month later that I was suppose to because once again, even my boobs get to feel the effects of autism, anxiety, and meltdowns.

I was a good girl and made my appointment as usual. I don't mess around with missing the lady bits doctor.  I could lose a limb and I would simply stick it back on with duct tape under the excuse "Well the Kiddo has OT later and my husband can't take off of work to take him."  Killer cramps and hormones, I keep those bitches in check. Plus, it was a trip the gyno that first made me face the reality of my own mental health needs.  You can read about that here.

But what happened? Kiddo left his mark on me. Literally. Several in fact.  Three days before I was scheduled to go Kiddo had a horrible meltdown. There was no talking him off the ledge. No redirection I could give. It was one of those where I just knew "Well, this is what we're doing for the next hour or so." I was alone with him, so I got the brunt of it.  My arms especially.  Scratched and bruised so badly.  He kept grabbing my arms with a force so strong. Eventually I wound up locking myself in the bathroom to get away from him because he was hurting me. I found myself calling my husband at his job and asked him to come home, which luckily he was able to do.  In the time it took him to come home, we had a brand new hole on one of our walls and the Kiddo broke the door to the bathroom trying to kick it down to get to me.

What I did not know till much later that night as I was getting ready for bed was the number of marks he left on me.  Some of which were clearly hand marks. You could see where his fingers gripped me.  I was a walking bruise. It wasn't till the next day when I got my phone call reminder about my annual mammogram coming up when I realized "Oh Shit, someone is going to see all this!"

I could easily hide the damage with shirts but during a medical exam where you aren't weren't anything above the waist, yeah, that wasn't happening.  How the heck could I explain it?  It wasn't just one or two marks. It was a crap ton. It was the kind of bruising where you might ask a person "Where you in an accident?" or worse "Who did this to you?"

Now please tell me, how the Hell am I suppose to tell someone it was my child? Especially someone in the medical community. Let's also remember, Kiddo is my height. He's got man hands now.  So these marks weren't small. I either tell them my kid did this and have to deal with all those questions and a possible phone call to child protective services.  Or I say nothing and have them assume I was assaulted or maybe something terrible like my partner or spouse had beat me. 

I found no other choice that I could make other than to call up and pretend to be sick and reschedule. I purposely made it a month from original.  Plenty of time for my arms to heal but also hoping that I don't wind up having more added to them.

We got lucky. He hasn't had a meltdown since that day.  My arms healed. I was able to go and get the tatas tested.  No weird questions or looks. Just the usual chit chat with the tech about nothing special while we both pretend she's not shoving my boobs between to two cinder blocks.

It's one of those things where it just feels so surreal. I'm all about advocating for my Kiddo and autism but there are some things, where do I even start?  How do you explain in a sentence or two that your child injured you and that's a totally normal thing for it to happen in your world?  I'm not looking for sympathy about it. I just want to be able to share what happens in our lives because I'm really, really, fecking sick of not talking about certain things.  People want the shiny rainbows of autism but it's not always something cute in a sound bite that you can share on social media and feel like you did something because you shared it.

I'm never going to be one of those people that tape their kid's meltdowns and puts it on the Internet under the guise of "awareness" but I'm sure as shit not going to keep quiet about them.  Guess what? When he has a meltdown, we all do.  One of my pals who's an autistic adult once told me "You get to be autistic by proxy." You know what? He's absolutely right. Here I am with injuries that I got during a meltdown that I don't even know how to begin explaining to someone outside of this world.  Geez Kiddo, if you feel this cut off from the world with not being able to express yourself, it's no wonder how mixed up that makes you feel all the time.

So yeah, don't tell me my world isn't ruled by Autism because in my many years of experience this is just one more example of how it is.

Life with the Kiddo. Get on board or get left behind. 

Who he is.

"When the sharpest words wanna cut me down
I'm gonna send a flood, gonna drown them out
I am brave, I am bruised
I am who I'm meant to be, this is me
Look out 'cause here I come
And I'm marching on to the beat I drum
I'm not scared to be seen
I make no apologies, this is me"

This is Me from the The Greatest Showman Soundtrack


Kiddo's school wanted him to wear this Autism Awareness fundraiser shirt last week. Everyone was suppose to "Light It Up Blue" and all that jazz. (Don't come for me folks who got a beef with that campaign. It wasn't my idea. I am merely reporting the facts for the context of this little piece, m'kay?)

Did I mention that Kiddo goes to a private school that is strictly for students with autism? So basically they wanted the kids to bring awareness to the fact that they all have autism. Which I guess, in a warm and fuzzy Kumbaya kind of way they could bond over. Or it would serve as a reminder to the staff that are all trained to work with autistic kids that these kids in the school strictly for students with autism have well, autism.

Okay, let's just admit this whole event is kind of strange but whatever. They're doing it.  It's April. We're suppose to dial it up a ton with the Autism.  Despite how this month often just leaves me befuddled, I dove right in.

I handed him the shirt in the morning and said "Okay bud. All the kids are wearing this today for Autism Awareness" and it struck me once again, does my kid even really understand that he has Autism?

It's no secret in this house. It never has been. We have talked about it quite openly but I still wasn't sure if he even knew what that meant.  With his intellectual disability to boot, a serious conversations about neurology would not be as easy as our usual back and forth chats filled with our movie script quotes and tons of inside jokes that only we understand.

I said to him "You have autism. That's what makes you, well, you!"

And I got a reaction that pretty much can be summed up as "Whatever".  In my head though I am thinking "Is this a big deal? Should I make it a big deal?  Yeah, it is a big deal. If anything, for his safety I need him to be able to say "I have autism" if anyone asks him. He needs to know his identity!"

I said to him "Say it with me. I have autism!" and he repeats it. Kind of quietly. Kind of unsure of the word. I say it again and encourage him to say it again with a big old smile on my face. I want him to know this autism thing, this is a cool thing about him. I want him to own it.  He says it louder.  Still not as sure.  The word, I can tell, still seems different to him.  While we might have been using it all around him, he sure hasn't been.  This might take some time getting use to a new word to use.

This is where I then think "Does he know what it means to have autism?"  More importantly, "Does he even care?"  Life with the Kiddo is pretty clear for a lot of things. If he likes something, he LOVES IT!  If he doesn't care, let's just say his resting bitch face is pretty stellar.  (Yes, he takes after me. How did you know?)

Since we are also firmly into the teenage years and attitude, I'm not sure if he really gets all the parts of it based of the fact that I get the "IDGAF" face about ten times a day as is for all other kinds of conversations ranging from "Did you brush your teeth?" to "Would you like to watch a movie with me?" So I have to factor that into it too.  If there was ever a person that was unapologetic with who he is, it's my Kiddo. I love him for that.

Cause this is the autism at my house. This is him. I'm not sure how it goes at yours but this is what we've got.  I'm not sure how to fully explain it to him in ways that I know that he knows what it means.  He might know now but can't fully communicate it with me that he does or if he even cares.  I'm just trying to get the sentence in his head so he knows when to pull it out when he's asked.

This looks like a job for a SOCIAL STORY!!!!  (And maybe a showtune. I mean, there's showtune for everything, really.)

Observe the "IDGAF" attitude. Kiddo doesn't really care what your opinion is of him or if you even have one. He's a baller like that. 

How to NOT talk about Autism

I don't know about you but if I had a dollar for every time I found myself stuck in an awkward conversation about autism I could buy Kiddo his own McDonald's franchise. I don't actively go looking for these interactions but they come up now and then.  I'm sure you have had them as well.

Maybe it's at a family gathering with some well meaning in law. Maybe it's with the mom next to you at the "Back to School" night. Autism comes up and the person next to you suddenly has MANY opinions on Autism and is extremely vocal about how you are doing every thing wrong!  It's especially wonderful when there's an audience of people around you watching this interaction.  Some of whom are equally out of touch with the subject but see it as their chance to hop on board with all their crackpot theories.  Despite your best efforts, the conversation is going nowhere good.

This is when I find myself just standing there thinking "Why did I choose to sit next to you? Why didn't I ask you about your kid or just compliment your shoes or something. Ask about your job. Anything other than sit here and bite my tongue." 

So many of us find ourselves in these situations and we are so worried about coming off badly in our response.  We don't want to offend them or hurt their feelings but let me tell ya something, that's some bullshit. Here's why.  They surely didn't think that far out when they made their hurtful and/or clueless statements. They didn't remember their manners or if it was the right time or place to talk about an already sensitive subject.  For whatever reason, they are not picking up on your social cues and body language that this talk is going off the rails and you are very uncomfortable.

Perhaps they are the ones that need the social skills training more than your kid.

The longer we have been "Living La Vida Autism", the more I have no problem stopping these conversations. I'm not saying you should get up and start screaming at them about how they are wrong wrongness sitting in a box of wrong but I have no problem stating "Thank you but that information in incorrect. I'm sorry YOU feel that way about Autism. That being the case, let's not talk about it. Seeing as it's something we clearly have very different opinions about."   Yes, you can say that to them. I am living proof you won't die if you do.  Look at me, blogging about, all willy nilly.

And that is usually all takes for them to realize "Oh shit" and shut up about it.  Or they stop talking to me. Whatever.  We're we gonna be besties? Probably not, so screw it. Why should I have to listen to a ton of Autism Myths that further promote stereotypes just because I'm afraid a person I can tell is a bit of an ass might get upset if I say "No, I'm not listening to this.".

And yes, I am aware that sometimes these conversations come from people that are also parents of autistic kids. Guess what? Telling them you would rather discuss something else is entirely okay! Seriously, I bet they would like to talk about something else other than Autism. Look deep into their eyes (or not) and just say "Hey, it's me. Same team here. Let's give ourselves a break and not talk about Autism for a moment."

and Dude, if they still want to go on and on and Autism and Autism about it, CHANGE YOUR SEAT. I give you permission to do so if that is what you are seeking.

And BUH-BYE. 

 You want to NOT talk about it? Come sit by Mama Fry. I'll be happy to talk about anything else.

When we crack

I can't say this life gets harder but it certainly hasn't gotten any easier.  Every age and phase brings it's own set of issues and complications that we somehow have to make work for him and for us.  I wish I could say I  handle this life with grace but sadly often I fail. Especially when new behaviors pop up.

We don't even realize how good we had it until we are in one of those brand new phases and I'm looking wistfully back at them. Thinking about them like they were the love that got away while humming Cinderella's "Don't Know What Ya Got Till It's Gone."

 

 Power ballad time! Get your lighters up. You see kids, in olden days we didn't have cell phones to hold up in concerts and were forced to use cigarette lighters. Which we held by our very highly teased hair sprayed to the gods heads and it's really a wonder we didn't all die in a great big ball of fire at a concert.  

But I digress...

The thing is, these behaviors and challenges, they can grind a gal down. Seriously, this autism stuff can be really, really fecking hard.  Since it doesn't really ever let up, how do we keep going?  I'm not trying to be deep by asking a rhetorical question here. (Honestly, this is a blogger that frequently quotes hair bands and drag queens. How deep can I be?)  I just don't know the answer and it worries me that when I think we have a steady grove going that we can manage, it goes right out the window.  Probably following something that the Kiddo threw out before it.

What are we suppose to do when we crack...

The logical go to is to take a break but please someone explain to me how I can do this. We have no sitters. No respite still from the state and I don't see that changing anytime soon unless a whole lot of people either move out of the state or die.  We have family that can help from time to time but they also have their own families and their own lives and we can't always expect them to help out.  Plus when things with the Kiddo are rough, I really don't want to anyone else having to deal with it.  I know. I know.  That's my own issue but I just don't feel right leaving him with someone when I know it's one of those "because Autism" days.

 I also feel so incredibly guilty being frequently burnt out by this all that I don't even want to admit it that I am.  This is why I often don't even bother asking for breaks. I literally don't feel like I deserve them.  I feel by asking permission to take one, I am failing him.

And look what I just wrote!  "Asking permission". For a freaking break. That's insane. Why do I feel like I even have to ask. There are plenty of people that just know they need one and take it. Who am I asking for permission?  I guess myself more than anything.

And another thing, (Yeah, I need to rant a bit on this one.) I will post this and many will say "Screw anyone that complains.  They don't get it.  They must not be parents." While I will agree with this to a point, I also know there is a good chance an autistic adult will read this and take it completely in the wrong way.  They will think I am talking about them.  They will think I don't love my Kiddo. They will take it that I am selfish.  They will tell me to "listen to autistic people", which I am down to do but I've been blogging for six years now and not one of them has told me what to do when I feel like I'm going to crack. Not one of them has offered advice on how to regroup.  I keep listening but when it comes to the topic of parental burnout, not much is said. By anyone of any neurology.   We just get crapped on to do better but not how.

Oh wait, sometimes I've been told it must be something I am doing to set off my Kiddo.  Now look, I totally jam with that whole "behavior is communication" thing.  I am just really tired of being told online at every single turn it must be something I've done.  Trust me, I am trying.  Constantly.  I accept a lot of changes in my life because of autism. Multiple times a day. If I am totally at fault for everything that happens here, feel free to take him off my hands for a couple of days.  Cause I am running out of ideas. 

Now pardon me while I go off to hide in the bathroom to play Candy Crush while listening to 80's hair band power ballads.   Right now, that's my go to for when I feel like I'm going to crack.  Maybe you could share what's worked for you.

Sometimes the dog pitches in and keeps him busy for me.  

Token Boards

We are having some homework drama. He totally can do it. He's just choosing not to and I can't tell if this is an Autism problem or a Teenager problem. More than likely, it's a hellish combo of the two. Ain't I lucky? #Blessed

Something has happened in the last few weeks where the Kiddo wants NOTHING to do with homework and I cannot for the life of me figure out why. This is a child that up to a few weeks ago would do it as soon as he got home from school. (Which as a former homework procrastinator myself, I did not understand how he could be related to me.) We've now hit an area of not just not wanting to do it but added gobs of behaviors that he sprinkles all over the experience. Crying, yelling, screaming and grabbing at me the entire time and for a good half hour after the actual work is done. Good gravy!

Clearly something needs to be done and I brought up to the teacher. She wasn't by any means giving him a lot or anything that was beyond what he could do. That's one of the most challenging parts of this. He's totally capable of it. A few weeks ago he would actually say things like "YAY! MATH!" when pulling out his worksheet. (Again, I almost question if I was given the right baby in the hospital.) His only struggle was the handwriting part but with a few prompts not to rush and take his time, the whole thing would be done pretty quickly and life at the House of Fry would continue right on schedule.
She decided to give him him some super simple homework. Stuff and concepts he's long mastered. She didn't want to get him in the habit of "Throw fit, then no work." which I agree with completely. If it was easy, maybe he would just mellow out and get into the groove again. So far it had been working. I was letting her know that there was less drama and he was just getting it done. She started sending home more challenging work but work he could do none the less and BOOM! It came to a Mac Daddy header last week over four freaking Math questions on a single worksheet. A clusterfuck of a meltdown and all aimed at me. FUN!

So, back to the teacher with a "HELP ME! I cannot be drinking by 3:30 PM every day or the neighbors are gonna talk." email and this was her reply.

"Have you tried a token board?"

Oh sweet Mother of Mercy.

I can't even believe I'm reading these words again but here we are. My Kiddo is 13. You want to talk about been there, done that, and threw the freaking token board out the window because DUDE, we have done that and then some by now. So let me tell you at why with where we are with autism and this journey and all that warm and fuzzy yadda yadda yadda B.S. why this isn't gonna do squat.

Come sit down. Let me break this down like Queen Bey.

Here's a math equation for it. Kiddo's inability to be focused on a long term goal PLUS having next to nothing that actually motivates him because even "Window Fries" don't have the same value as they used to when he solely existed on them as toddler EQUALS The Kiddo giving ZERO FUCKS about a token board. He just doesn't care. Period.

Look, I get that token boards/reward earning works great for some kids but there gets to be a point where this classic move just doesn't cut it anymore. Especially after years of various behavioral approaches being done on the lad. He knows your tricks and he doesn't care how hard you worked on your laminate Velcro tokens that you made when you weren't getting paid over a weekend. I get it. Teachers and therapists work so hard with our kids and I am so grateful that they do because they get paid a shit wage and work all the freaking hours of the day. But WHHHHHHY on God's green earth is this the only go to ya'll got?

I kind of wish teachers would just say "Well, shit, I don't know what to do either if that doesn't work." Let's all just be in that feeling together. It's okay. Sit right next to me. I'll share my fries with you too. Seriously. I'm not saying I know more than you. Not in the slightest. I have ZERO clues just like Kiddo has ZERO fucks about those damn tokens and a timer. That's why I'm emailing you all the time crying for help.

And at this rate, I have to be real about his future. Part of me wants to just say "Okay, we're just not doing this homework stuff anymore." and insist it be added to his IEP. The other part of me really likes this teacher and she's figured out ways that work with him before. We email some more back and forth and I think we might have something. I explained why the token board idea doesn't jive here and that maybe we could focus more on his typing skills since it's when he actually has to write the answers he loses his shit. We have all the products that Apple makes and plenty of WiFi. (I mean clearly it's a strong signal as I'm emailing the teacher all the freaking time.) We're moving on to stuff he can email to her and I'm hoping like Hell this might be the thing that works.

Cause much like the Kiddo, I too give ZERO fucks about a token board and I'd rather focus our collective energy to something that might prepare him more for the future that is rapidly approaching.

Fingers crossed! Let's hope this works.

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. 

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.)

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.