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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.  


Tuesday, January 23, 2018

Meeting in the middle.

"Are you okay Mom?"

The question caught me off guard. I had a bit of a coughing fit because of a tickle in my throat as I was about to start my car. Seeing as we were the only two in the car, I was kind of in shock to hear a question like this asked of me. I looked at Kiddo and asked him "Wait. What did you say?"

And he repeated himself "Are you okay Mom?" with a look of genuine concern on his face.  I stumbled to answer him,  "Yeah Kiddo. I just had a tickle in my throat."

"Go see Logan and Maya?"

"Yeah, we can go back home now." and I started driving back to our house because I know when he asks to see the dogs, he's done with being out and needs to go home to decompress.

He's never inquired about me. He's never asked how I was. Ever. I was a bit stunned that he not only asked but repeated it.  Sometimes when I ask him to repeat things he has said, he gets shy and looks sad, Like he thinks he's failed at enunciating something clearly and then is unsure of being able to do so at all and will whisper it so quietly. So the fact that he not only asked this but did it twice loud and clear, well butter my butt and call me a biscuit! Hot Damn!

The Kiddo has always shown empathy even though it's never in the usual way. ( Like asking someone if they are okay.) Like most things with Autism, I had to get use to it. That it wouldn't be in a way I expected. Or even the way that I needed it.  As I learned his ways of expression, I guess he was also busy learning some of mine.

And isn't that what we have been working so hard all these years to do.

I guess what I am saying is I have to remember to honor his ways because he is trying his best to honor mine.  I might think his ways of looking at life are quirky but I'm sure things like looking at people's eyeballs when you talk to them is pretty strange sounding to him. So I guess I'll keep meeting him in the middle because it's worth it. 

So. Freaking. Worth. It. 



Monday, January 15, 2018

Kiddo's Squad


New year, new blog-ish.  Well, not really. I thought it would be fun to try a little something different.  You see, there is one thing I know with our lives with autism. It's that we have been lucky enough to meet some really amazing people. In this case, it started because Kiddo was her client. Whether she planned it or not and because I have boundaries issues, became friends with as well! 

Who is this person? Well if you follow me on my Facebook page, you might be remember me referring to the "Magical Speech Therapist Who Graduated From Hogwarts And Gets My Kiddo To Eat Things"! Why yes, Let's meet Kelly Sheehan of Abilities in Action!   (Give it a click if you want to find out more about this amazing group of Speech, OTs, and PTs.  Seriously. Fantastic group and I've spent so much time there that I'm surprised they didn't name a chair for me in the waiting room.) 


"Miss Kelly" and the Kiddo got along like gang busters and I must say we both miss seeing her weekly.  Kiddo was discharged last summer. :-(  However, she's pretty supa fly and when I have a "WTF?!?!" question, she always answers it and sends "Hello" videos to Kiddo.  I kind of thought it would be kind of cool to ask her some questions about Autism, Speech and Feeding Therapy, and how Kiddo and I managed to traumatize her when Kiddo lost a tooth and SPIT IT OUT INTO HER HAND.  Sounds like fun, right??  Here we go! 



What made you want to become a Speech therapist?   "In middle and high school I was an office assistant in a small Physical Therapy practice and loved watching the PT basically fix her patients--- BUT I was not in love with the coursework that PTs have to take.  My supervisor suggested I observe her friend, a speech therapist, because she thought I would make a great one.  The rest is history...."



What’s one thing you learned “on the job” about Autism that you didn’t learn in a college/grad school course? "One thing???  I received my MS in 2000.  18 years ago we didn't have specific coursework in Autism so I basically learned everything I know from my first job on.  But I can tell you one thing that amazes me about kids with Autism that I know you could never learn in school.  If you just take some time to "be" with them, you can understand a whole lot about how they are feeling and what motivates them, even if they don't or can't say a word."


What’s one mistake you see parents/caregivers making in regards to their kids?  "Not sharing information with therapists.  I imagine parents may sometimes hold back information because they are afraid of being judged (btw, if their therapist is judgmental, they may want to find another one)-- but the only way to maximize the effectiveness of a therapy session or entire plan of care is to have as much information as possible regarding what is going on with their child."
    

You are my “magical feeding therapist from Hogwarts”. What’s one feeding tip parents can do at home? "I can't stop at one.  First, do not force a child to eat anything, even if they were told to do that from a professional.  Second, if you have feeding concerns, seek advice from a feeding therapist (either an OT or SLP) even if a doctor says not to worry.  Third, the parent is not to blame for the feeding issue.  EVER."


What’s the biggest misconception about what you do for a living?  "That speech therapists just work on lisps."


Have you forgiven the Kiddo for losing one of his baby teeth in your hands?  "This was most definitely one of my most unforgettable career moments to date.  And yes, how could I not?  He's such a charmer."

Dammit, I forgot to ask her what kind of adult beverage she had that night after work.  I bet she told her husband about that one.  ;-) I can still see her face.  Holding a little plastic bag with his tooth in it.  Oh man, I owe you a six pack with a side of fries for that one Miss Kelly.  

But ain't she cool AF?  A lot of times, I can get frustrated with our lives. Usually within minutes though, I remember we have this amazing squad of people around us and she's one of them. So I hope you enjoyed this little insight with a Speech Therapist and you didn't even have to cough up a co pay.  

Sidenote, her husband makes the most bangin' BBQ sauce. How good is it? Well, it's the only BBQ sauce Kiddo will eat.  So that says it all. ;-) 

Fun fact. Miss Kelly and my mom have a little rivalry going on who can make the Kiddo try new foods.  Miss Kelly was the woman that got Irish Soda Bread past his lips though.  I think that still stings Kiddo's Granny. Mainly because any new foods he's eaten since my mom is quick to tell me "You text Miss Kelly and tell her what I got him to eat!" 





Thursday, December 28, 2017

Your kid has autism. Get over it.

Miracle Mineral Solution or the MMS protocol.  Ever hear of it? No? Need a refresher? Allow me. It's Chlorine Dioxide, an industrial bleach. High oral doses of this bleach can cause nausea, vomiting, diarrhea, severe dehydration and other life threatening conditions like kidney, liver and or heart failure.  

It's often given to autistic people, mostly children to "cure them".

And if that's not horrible enough of an idea for you, it's usually done as an enema. Which destroys the linings of the intestines and parents proudly display pictures of bloody discharge on message boards and private Facebook groups because they believe they are ridding their child of parasites and autism. 

Go ahead. I'll say it with you.  WHAT. THE. FUCK. 

I'm a bit of an autism old timer by this point. I've been hearing about this treatment for a while. As a matter of self preservation, I try to ignore/avoid this topic and other ones like it because ain't nobody got time for that. If it looks like a duck and quacks like a duck than it's a freaking quack doctor duck. Or something. You know where I'm going with this because I'm kind of sure that the majority of the people that follow my little old blog are rational and thinking people.  Chemicals they would use to clean their bathrooms are not things they are interested in having their child ingest. I mean, it's hard enough to get my Kiddo to eat a vegetable and I'm also not BAT CRAP CRAZY. 

This past week I've been binging on podcasts on the psychology of cults. (Yeah, it's safe to say I have eclectic interests.) Anyway, as I was folding laundry I heard a statement in regards to Scientology that made me lose my mind on this topic.  That not only are they telling parents to do this to their autistic kids, they should be giving it to their neurotypical children as well to prevent autism from possibly developing and that's when I let out a string of curse words that would make a sailor on shore leave blush. 

A reenactment of me hearing it. It totally messed up my good hair day too. 


Cause it's not enough to abuse and possibly kill your autistic kids. Let's get the other ones too while you're at it because you are THAT afraid of autism.  (Fun fact. Scientology doesn't recognize autism as it falls under the area of mental health and that doesn't exist in their world and yet, they have no problem selling this MMS junk as the cure to autism. You know, the thing that doesn't exist.  Ummm, okay then.) 

You want to know why there are so many autistic adults online that seem very angry at parents?  It's because of stuff like this and frankly, can you blame them? Like seriously, imagine you are autistic and you first stumble across a post about this. How these parents are willing to take the risk that their kids will have organ failure because autism is just too scary and needs to go away.  Or, imagine being an autistic adult that somehow survived this treatment.  It can't even wrap my mind around that.

The people that do this are the reason we can't have nice things and it's time we had a "Come to Jesus" conversation.

Your child has autism. It's not what you planned but hey, your kids didn't plan on having parents that would consider bleach enemas as a sound medical choice either. Looks like you're both disappointed but how about accepting what life gave you so you BOTH can be happy and move forward.  How about that? Making your kid happy.  I think that's what all parents can agree on.  We want them happy and we want them safe.  Having your child ingest bleach, NOT SAFE.

It's quiet possible that even if your child wasn't autistic, that they might develop and grow their own set of ideas, opinions, and beliefs that are completely different than your own or what you raised them with.  Despite sending me to Catholic school all my life, my butt isn't in a pew on Sunday.  Guess what? My mom didn't try to give me bible enema.

Your kid might be a Democrat to your registered Republican.  Your kid might be gay. Your kid might realize that they do not identify with the gender they were assigned to at birth.  Your kid might marry and then divorce even if you think that marriage is forever.  Your kid might not want to make you a grandparent. Your kid might doing something really evil like root for the Mets when you're a die hard Yankee fan.

Your kid has autism and that doesn't change a damn thing about them. It just explains their neurology.  That's it.  Yes, autism has challenging aspects to it. I won't sugar coat it. Some of these can be down right hard to live with but this "miracle solution" bullshite? This has to stop.  This is abuse. Plain and simple.

Sometimes the only cure needed here is a change of attitude.  Your kid has autism. Accept this and them.

I accept the fact I have to give the Kiddo no less than 50 head scratches and squeezes a day. 





Wednesday, December 13, 2017

Mixed feelings.

It's okay to resent some of this stuff.  Autism.  There, I said it.  You are allowed to be upset by some of the things that autism does.  Yes, you can.  You are not a monster for acknowledging how you feel. You can be mad at it.  Some parts of autism can be not only hard to understand but very hard to live with.  It's what you do with those feelings that counts.

 I would never dismiss a feeling in a person.  That's their right to feel it. Sometimes you're stuck in it for a few moments and sometimes, a few months.  One feeling I'm sick of feeling is those who judge us and our feelings about autism.

Guess what my dears? I can be mad about some of this shit AND still be a good mom.  I can resent the crippling anxiety and sensory issues AND still celebrate the fact that my Kiddo is awesome for his unique way of looking at the world.  Humans are complex creatures.  We can have more than one feeling going on at one time. It's possible.  At the end of the day, when you are the one being kicked, grabbed and screamed at by him, when you are the one cleaning him up after he barfs from anxiety again, when you are the one picking up the pieces for the hundred time of his latest meltdown, then you get to have a say about my parenting.  Till then, go be perfect someplace else.

I can still take issue with the folks that left my life because autism came along in ours and made things complicated.  Likewise, because of autism there are now literally thousands of wonderful people in our lives that wouldn't have been otherwise. I mean, it's kind of nuts knowing that.  I thought I had good people around us till they weren't around anymore and although that doesn't happen as much, it still happens as his needs change.  But pick you over my Kiddo?  Bitch, please and BYE.

Autism brings a lot of mixed feelings.  All the freaking time. I struggle with the daily. I'm trying my best and I even know that sometimes my best will still fail him. I'm not going to deny when I have those mixed feelings though.  Even though I resent having them.

What can I say?  This shit is complicated. ;-)

Kiddo, It's 106 miles to Chicago, we got a full tank of gas, a side of fries, it's dark, and we're wearing sunglasses. Despite it all, there's no other person on earth I'd rather be on this road trip with.  





Thursday, November 16, 2017

Precious.


"The things your think are precious 

I just can't understand."

Reelin' in the Years by Steely Dan

We've been dealing with an anxiety upswing for a few weeks now.  It's gone from being the current crisis to the new normal. I can't say I'm too happy about that. What else can I do though? It's not like I can just ask or order Kiddo to switch it off.  How much do you calm down when someone says to you "Calm down!"? 

I'm constantly on edge with the Kiddo and how he is feeling.  He can go from happy and giggling to full blow anxiety pacing in under ten seconds.  I'm finding it hard to keep up momentum. Always having to be "on" is exhausting. It's like playing one of those arcade games of "Whack A Mole". Squash one problem, another one pops up. It never ends. 

The only thing that we had going for us was that at school, he was fine.  They really didn't know what we were talking about with the panic attacks.  I was grateful for it. 

Till yesterday. 

Wednesdays are already traditionally tough in the House of Fry.  For reasons we do not fully understand. I've dubbed them "WTF Wednesdays" long ago.  So my husband is away overnight for a convention for work.  Then add the Kiddo's teacher, who he loves, is out for the week.  Yesterday was also her birthday and her not being at school so he could sing "Happy Birthday" was the tipping point for the Kiddo.  HE LOST HIS SHIT.  There is no other way to describe it.  That was just too much change for the Kiddo.  Dad being away and not being able to wish his teacher a happy birthday switched on the "HULK SMASH" feature of his brain.  Did you know that desks were aerodynamic? Let's just say Kiddo did some aggressive rearranging of the furniture of the classroom.  

His school being his school didn't call me though to tell me to come get him. They dealt with it but they also knew that this wasn't him and called me to say he had a "rough day." (And I have to love them for calling it that.  Just a rough day when you throw a desk or two. No big deal. Makes you wonder what the Oval office looks like right about now with all those rough days there.)   

It was clear talking to them that they too have seen what Kiddo is clinging to the most lately and that is his schedule. Any changes without his expressed written permission, well, it ain't gonna be pretty.  This is the one thing lately that I can't get why it's become so rigid with him lately.  I mean, I'm all for routines.  I love them too.  Kiddo was able in the past to be more flexible with sudden changes.  (Like someone being absent or adding a stop to a list of errand running.)  Now, if it's not written down in his notebook which lives on our kitchen table, it does not exist in his world.  He has to have things in their order and he looks so damn content checking them off as he does them.  It's so precious to him and I can get that even though I kind of still don't. (Does that make sense? You know what I mean.) 

There are some good things with this notebook.  He's written out his whole morning routine that I no longer have to say a word to him to do it.  He's getting it done.  So, that's a nice trade off.  Of course, it comes with him getting up earlier and earlier lately so he can run out to his notebook to check off "wake up" off his schedule every morning.  Earlier wake ups lead to more free time in the morning which would be fine if he wasn't tapping his foot waiting for the world to hurry up so he can check off the next thing on his schedule.  I won't lie.  This behavior of wanting to rush through everything is driving me bat crap crazy and let's face it, I didn't have far to go.

Knock wood, the new normal of barfing all the time has been better but he still has moments of it.  Even though today's schedule was a school trip to a mini golf center, he was looking a little sweaty. A little off.  I gave him an anti nausea medication just to be on the safe side so I wouldn't get the phone call of shame from the school nurse.  He settled and seems to have had a good day.

My pal "A" always says "we live in moments" and that's pretty much all we can do right now. If the moment is good, enjoy it. I know how quickly it can change.  The good ones are precious and I hang on tight to them.