Monday, March 28, 2016

The Good, the bad, and the surprising parts of Autism.

My husband finished dinner last night and the Kiddo took it upon himself to clean up after him. He took his plate and fork and placed it in the dishwasher. By "placed" I mean "threw in there." but dammit, "A+" for effort! I had already left the room, so Daddy Fry went to find me to share this.

As we both stood there marveling in how utterly awesome/sweet that was, the Kiddo came up behind my husband carrying the half finished wine glass the Daddy Fry had left on the table and handed it to him. Then he went back to his iPad.

Daddy Fry said "Well that's going in the blog, isn't it?"

Well duh! That story wrote itself.

It's an example of how freaking thoughtful the Kiddo can be and a reminder to us that he's often more capable of things. Only child with a side of autism often lends itself to me overdoing things for him.  Which if the pre Kiddo Job Coach to autistic teens saw, oh she would give me an earful. I catch myself doing it all the time.

And yet when we went out to eat with family recently, I found myself barely eating because I was on non stop Kiddo cleaning up duty. It seems that despite being very interested in consuming a bowl of rice at the Chinese restaurant, it was a "utensils optional" day according to the Kiddo. Sticky white rice and grubby eleven year old fingers, not cute. This coupled with him having one of those "Let's raise awareness about my autism LOUDLY!" day with tons of stim noises and scripting. I knew why he was doing it. The place we went to was new, different people joined us that we don't see often, and the food wasn't like how we get it at the place by us. It was a trifecta of suck. Even though I knew that it could go badly going into it, I still had to try because like I mentioned above, he can really surprise us at what he can do. If we don't give him a chance, how will we ever know?

Still, I won't lie. I was tad annoyed/frustrated/ticked that we were having a less than stellar moment out. (Hey, before you rant on me for it remember two things. 1) I'm human. 2) My mom reads this.) I'm allowed to get annoyed just like he's allowed to stim. It's what we do. I have to try and remember as frustrated as I felt, his anxiety was through the flipping roof. That most days it's the anxiety, not the autism that is the bigger pain in the ass in this house. We're talking about a Kiddo who could medal in worrying.

Here I was thinking "Meet ya out to eat? Sure! We can do that." and SURPRISE! Not today, Satan. Not today. Did you enjoy that one shrimp dumpling you got? Good, cause that's all you're getting to eat at this meal.

That's just life with the Kiddo.

His surprises can be awesome and amazing but they can also be awful and sometimes downright terrifying. Even though the bad ones can really grind my gears, I still like holding out for a good one. They do pop up now and then.

I'm not sure what to call this one. Certainly surprising though.

Kiddo is either doing Yoga or surfing YouTube. I'm not sure.  

Monday, March 14, 2016

It's a MAJOR Award!

The last few weeks at French Fry Inc. have been eventual. We've had dental surgery, our first outing to a Broadway show, an IEP for the transition to middle school and yet another bust in the terms of finding an appropriate social skills group. So when I was chosen to be honored at an Autism Moms dinner, I was pretty floored and it was exactly what I needed. Let me get this straight. You're going to honor me, let me bring some guests, feed me, give me an open bar, let me socialize, without having to Kiddo wrangle? SIGN. ME. UP.

Frankly, it felt kind of weird to be awarded for blogging. It's a pretty self indulgent activity to be honest but I'm not about to say "No" when someone wants to make that much a fuss. Plus, here I am preaching about taking care of yourself to be a good mother to your kids and I hadn't had a girl's night out in a long time. So off I went to the 4th Annual Pamper Me Dinner for Autism Moms.

There was one catch. I was asked to "speak a little about your journey with autism."  Not going to lie, as nervous as I was to do such a thing (Cause it's so not scary typing on a laptop in my pajamas with Mob Wives playing in the background.), I was really excited about it too. Mama Fry has a background in theater. This autism stuff is my passion. I could write a kick ass speech and I did. In typical Mama Fry style, on my phone while waiting for the Kiddo to finish up with his speech therapy appointment.  That's how #TeamQuirky rolls.  On. The. Fly!

Since not all of you were there to witness me blank one paragraph in and then have to improv and wing it, I thought I would share it here.  (Mama Fry's memory ain't what it used to be.)

"Thank you so much

I was asked to say a few words about "my journey with autism". I don't know about you but I don't feel like it's a journey. It's more like multiple trips around the same race track. Lap after lap after lap.

Yeah, the scenery gets a little repetitive but you learn from it. You start anticipating when parts will be bumpy and know when to sprint when all you feel like doing is crawling on your knees.

You'll see and hear when there are folks cheering you on but there will be parts when you are running it alone.

You also have a coach. It's your kid. They'll push you farther than you ever knew you could go. To your highest highs and lowest lows.

And like most track meets, you'll start seeing some of the same faces who are running those same laps with you. Say "Hi". They aren't your competition. They're your teammates. Team quirky mates that is.

So do it right now. Say Hi to each other. Ladies, celebrate your journey and the race. We made it this far. We can do it lap by lap.

And take the long way home and tell your husband there was traffic. You think he hasn't pulled that number on you?"

"What do you mean this isn't karaoke? I prepared a medley of show tunes." 

But look at that picture. I actually kind of sort of look like I know what I am doing! Ha! As if. 

Then I got this very nice award. An "Empowerment" Award, which I think is a nice way of saying "Your big mouth that can't shut up does good things." I think. Hey, I was able to harness that power for good so I must be doing something right. ;-) 

As fabulous as this is, I have to hide it up high. I could see this going airborne. 

And then I was asked to take pictures in front of this thing called a "Step and Repeat." Translation, that wall hanging behind celebrities at events with company logos on it.  What the what??? Me???  

Step and Repeat Selfie because I'm kind of a dork. Kind of? Pffft. Am.  

The single best part of the day though, meeting folks that read this blog and follow me on social media. I was asked about a dozen times to take selfies with people. I've never been so humbled in my life that anyone would think of me enough to want to do that. 

I also had a table full of friends that made the trip to see me. Again, what the what??? Floored, stunned, honored and grateful that autism has brought these people into my life because they are the most amazing group of humans on the planet. (I suspect the open bar and the kid free day was a perk but I'm going with the idea that they just came to be supportive.) 

By the end of the day when I finally got in my car to drive home the emotions of the day really washed over me. I cried. Not the ugly snot running out your nose kind but the "God dammit, this is gonna feck up my mascara and make my eyes red." kind. I'm still in awe of all of this. 

Thank you all so much for being my #TeamQuirky teammates. 

Friday, March 11, 2016

Blind Dates

I am a married woman and yet I still find myself "Dating".  At least that's what some of this autism stuff feels like to me now and then. I just came back a pretty bad one. Well that's not a fair description as the date itself didn't even really get off the ground as the other party failed to show up.

In the interest of the Kiddo, I found myself researching and looking for some new things to do with him. We're in a bit of a relationship rut and although I'll be the first to say "We do it the say way every day or there is Hell to pay.", I know a good shove outside his comfort zone now and then is kind of good for him.  Especially in the area of social skills and doing things with his peers.  Despite my instance that my dogs are his brother and sister, they aren't the best peer models. Being an only child, it's way too easy for us to just let Kiddo hermit all up with his iPad and his DVDs and just be chill in that scripting world he likes to live in.

The thing is though, this people doing things with each other and having interactions Kiddo? Yeah, that's not some sort of gimmicky trend. It's actually kind of good for ya. It teaches you to express and advocate for yourself and despite the whole "Mom and Dad can never die." plan I have going, we need you to do that interacting thing more often. He only grows older and bigger by the day. Being independent is a goal.

So the answer for this situation should be finding some sort of social skills group. These are usually small groups of like diagnosed kids lead by some sort of therapist to work on anything from basic manners, turn taking, and even play skills. Sometimes they even get downright funky and sprinkle in some neurotypical kids to do a little "This is How We Do It." (90's club hit flashback. HOLLA!) with playing and modeling behaviors. Sounds wild doesn't it?

I'm also convinced at this point that despite a thousand articles and books that talk about these groups, they don't actually exist. They are, to me anyway, the Loch Ness monster of behavioral interventions. I'm forever chasing them and yet never finding one that actually does what the articles and books I have read say they will.

Yesterday, I had high hopes. I had heard about a group in my county. I had talked to a parent who was happy with the program. It was the sort of thing I was looking for the Kiddo to be in. I had been burned by other groups before. Badly. Including one where the small group therapists left a voicemail message later telling me I ought to have my Kiddo evaluated. (Because why read that lengthy intake form I filled out that had AUTISM written all over it in about ten different places. That would be silly.)

And yet, despite having my heart broken again and again, I keep trying. I filled out the forms. I waited. I finally heard back and had what I thought at the time was a nice conversation on the phone with one of the directors. I really started to get giddy when she suggested I come by on my own without the Kiddo to have a more in depth conversation without the distraction of having to wrangle him. She sent a follow up email confirming where and when we would meet. I was really stoked about this.

Cut to the scene two weeks later where I'm in my car wondering why I was stood up. The person not only didn't keep her appointment, she wasn't even there. No one even knew where she was or what I was doing there and made me feel as welcome as chewed up gum. I put on real pants, make up, and drove thirty five minutes out of my way for this? After waiting a good twenty five minutes, I gave up and left. I have my pride. I did call and leave messages. It's now been twenty four hours and I've yet to hear back from her or the group as a whole. I'm suppose to leave my Kiddo with you? NOPE.

It's one thing to have gone through these long intake sessions with your child and then hear a rejection down the road. This was just a plain old WTF?!?! situation.

I can't help but keep thinking about something an old case worker of the Kiddo's said to me back in his preschool days. The Kiddo gravitates towards adults. I joke all the time how he loves to charm the older ladies. It's no wonder why he is a cougar lover. The only person he routinely hangs out with is a forty one year old woman. (aka Me aka his mom.) So yeah, being an only child doesn't help either. He's just not around kids except for school a lot.

I know I have to find more social situations for him and we are forever trying and failing at this. Up till yesterday I had a very "To Hell with them. We'll go find the thing that works."  kind of attitude about it. For some reason this one stung. I am thinking this is just another example of the myth of the "wealth of services" a lot of folks think we autism families have access to using. It's hard to use something that simply doesn't exist.

Well, I guess it's a good thing that the Kiddo gravitates towards adults because he's only growing taller, bigger, and older by the day.

If I could just put some textbooks on his head, maybe that would slow down his height...

Tuesday, March 8, 2016

Give My Regards to Broadway!

I am a proud theater geek. A musical junkie. Why yes, I would think life would be better if every now and then folks just broke out into a song and dance number. Both my parents are also musical lovers. Big time. My mom saw Camelot on Broadway seven or eight times. (I think that had more to do with Robert Goulet being in it than the score but way to perseverate Ma!)

Okay, he was quite a dish.  I don't blame you on that one Ma. Is he my real daddy? 

Anyway, like any good play, autism came and PLOT TWIST! I had enough trouble trying to navigate everyday tasks with him. Tackle New York City and a show? Yeah, that idea wasn't even in my mind until I watched my brother and his family go off to see Aladdin. I was like "Well damn, that sucks. We'll NEVER be able to pull that off."

Or would we? Enter the Theatre Development Fund! A group that arranges to book entire performance so just us #TeamQuirky players can buy tickets to go. Now that's what I'm talking about!

Just what makes a Broadway show suddenly "autism friendly"?  Well, kind of like the sensory friendly movies that are becoming more popular, the sound isn't as loud and nobody cares if your date to the theater is flappy because theirs is too. Can I tell you what an absolute pleasure it is to be surrounded by the #TeamQuirky tribe?  Everyone GETS IT.  Also, the ticket prices are reduced.  Still expensive but not "OH MY GOD! ARE YOU KIDDING ME?" expensive. More like "Well, good thing fries are cheap." expensive.

I have never been to an autism event that was positively dripping with volunteer support staff like this one. Each carrying a bag of social story cards and fidget toys. There were "quiet zones" set up in the lobbies with play mats, bean bag chairs, toys, and books. A perfect place for the Kiddo to plop himself down on before they opened the doors. I noticed the bathrooms were turned into "Family bathrooms", so nobody cared if a mom brought a son in with her or a dad had a daughter in tow.

I couldn't help but noticed they were still sitting people that were coming in twenty minutes into the performance. If you have ever been to a Broadway show before, you know those doors close promptly at showtime and you are shit out of luck if you are late. That was really nice as I am sure most of those late comers timed it that way so their kids wouldn't have a lot of waiting time before hand in the seats with nothing going on. I get that.

First act, the Kiddo LOVED it. I spent the first number really watching him watching it. I didn't know that I would cry to "Arabian Nights" but there I was testing out the waterproof mascara I put on that day. In typical fashion of my Kiddo, he wanted to singing along and he did. Didn't know the words, so he made up his own.  Did anyone around us care? Nope! Not a single person blinked an eye at it.  Most likely because their kids were doing it too.

Intermission. Oy vey, that's when shit got real.  The curtain closes. The lights go on and the Kiddo pops up and declares "The assembly is over!" and grabs his coat. I explain it's just a bathroom break time and my husband takes him to the restroom. While they were gone I watched a Koosh ball get tossed on the stage and then see a stage hand strut on stage to go get it. That kid really tossed it from far back. Good arm on that kid. Again, did anyone care? NOPE.

This is where it got dicey. Kiddo comes back to his seat and he's just done. He just wants to leave but I'm talking to him and explaining that even actors need a bathroom break. Hang tight. The second act starts and I'm hoping the magic will happen again. Yeah, ummmm, not so much so. Wasn't just the Kiddo though.  Collectively, all the kids were kind of losing their shit at this point. (Actors and stagehands, I know you need your breather break but Man, that was a tough concept for the autism crowd to accept.) My boy was stuck in an awful place.  He didn't want to stay but he didn't want to leave. He just wanted the lights back on and the show declared finished. I must have heard "The assembly is over." about a thousand times. We tried to leave but then he got upset about leaving. I honestly didn't know what to do at that point and was hoping like heck the Genie would just wrap it up already.

Then a small miracle. A volunteer came over and offered the Kiddo his own Koosh ball and a stress ball to play with and Damn if that Koosh ball didn't save the day. I told her "I think we might leave." and she told me "I'm right over there. I'll help. You just say the word." and she goes back to her post. By this point the husband hands our Kiddo his smartphone in last attempt to calm him and a bit of YouTube seemed to help too. Did anyone care? NOPE! There was a kid in front of us who played Minecraft on his iPad the entire show. Did we care? Nope, nope and did I mention, NOPE!

I had the foresight to have ordered seats on the aisle and when that curtain closed at the finale we were OUT OF THERE! Probably a good thing. Didn't get stuck in a crowd slowly snaking out of the theater. I'm sure that would have been stressful. Kiddo immediately asked for a hot dog, so that's what we did next. He was happy and content over dinner. My husband and I were both kind of stunned that we actually managed to do all that.  There would be no way on this planet that this would be something we could do as a family without this kind of event and these supports. Even though this had some stressful moments and the potential for a really ugly scene, it was utterly and completely worth it if only to hear my son clap and screaming "YAY!" at the end of each song. (During the first act anyway.) We will certainly do it again and I'm hopeful that we can use this experience to bridge to the next one. ("Remember the bathroom break buddy? Yep, same thing here too. Darn those actors needing to pee!")

I'm really hoping more and more of these events happen and not just at the "kid level". My Kiddo is going to grow up. He's got a pretty good sense of humor. Maybe he'll want to see "The Book of Mormon." one day. ;-)

So thank you Theatre Development Fund for showing my Kiddo "A Whole New World". (Ha! See what I did there?)

Post theater cocktail. Hey, Mama Fry earned this one. 

Wednesday, March 2, 2016

Talk is cheap. Dental work under sedation is not.

If you follow me on Facebook, Twitter or Snapchat, you know yesterday was the day of the BIG DENTAL EVENT! The Kiddo chipped a front tooth on his iPad. (Yes, you read that correctly.) This, combined with a lifetime of wrestling matches to brush and dental cleanings that often required three or more adults to hold him down, we were welcomed into the wonderful and expensive world of sedation dentistry.

Not gonna lie, I was nervous and perhaps a tad annoyed that we even had to go this route. I mean, this Kiddo of mine has been know to put anything and everything in his mouth EXCEPT a toothbrush. Flossing? And then she laughed and laughed and laughed. This was a situation that never got better. Just zippo progress. Not amount of social stories or modeling could get him through this. There's really no choice in the matter. It's what had to be done. So appointments were made and off we went to get to the hospital by 6AM. Cause telling the Kiddo that he couldn't eat or drink till his appointment was going to be rough to say the least. It was best to just be able to roll out of bed and go.

This proved to be the start of the running theme of the Kiddos limited verbal abilities and how kind of misleading they can be to the average Joe that encounters him.

 "What do you mean he won't understand that he can't eat or drink before the appointment? He just sang the song "Bird is the Word" perfectly for me."  Yeah, about that. There's the a difference between expressive and receptive communication. Speaking and understanding, BIG huge difference. I have talked about our personal struggles with it here. You should read it if you haven't. Don't worry. I'll wait. I'm trying to beat this level on Candy Crush Soda Saga anyway. "At least your kid talks"

You're done? Super! Okay, so where were we? Oh yes, him talking and making all the medical staff just fall in love with him. Which he did. The whole floor was staffed with middle aged/older ladies nurses. Kiddo loves him some cougars and the cougars love them some Kiddo!

"How's his pain level?" Ummmm, your guess is as good as mine. Just because I can translate some things that he says, doesn't mean I am completely fluent in "Kiddonese". I was asked this multiple times yesterday and although it was met with the token sympathetic head nod on their part, I have wonder if they actually get the amount of frustration that comes with it. Sure, it's great my Kiddo can tell you the number of every hotel room he's ever stayed in. (Regardless if you asked that or not.) Expecting him to tell you what's hurting, not gonna happen. Ever. I can't help but be concerned how this will affect him medically down the road if I am not there. Despite my "I can't ever die" plan I have going, some day I won't be around. Or what if as he grows older he pulls the "Oh Hell no. You're not coming into my medical appointments." Now that scares me.

"He seems so happy!" Yes, at this moment he is. You gave him a gown and fuzzy socks and told him he could run around without his pants. Who wouldn't be happy with that? No school today AND no pants? Well that's just my Kiddo's jam! He doesn't fully understand what's about to happen though. Despite all the prep work that went into it. The comprehension of it all isn't there. Even though you thought it was when you said "You'll just take a little nap." and he smiled and said "Hibernating! Like a bear."  The rest of it? NOPE.  But you laughed, so he laughed and said it again because twice is always funnier in #TeamQuirky land.

Coming out of anesthesia is rough for any kid, add autism and it's all whole new level. He cried for hours and I could just tell he was convinced this achy and loopy feeling way was permanent. There was no settling this emotional meltdown and we had to just ride it out. A large part of it was him plopping all ninety nine pounds of himself on my lap and wanting to be held like a baby, which I obliged even though it crushed my internal organs. I have two kidneys. He can squish one. No big deal.

It's always a case of being this Kiddo's translator and sometimes I wish the autism didn't play a part in some of the things we have to do. It certainly can complicate things but it also allows me to really seeing run of the mill situations in a whole new way. I do love the different perspective. I just wish it wasn't so hard or expensive sometimes.

You'll be happy to know that the Kiddo's surgery went very well and he's now gotten the clearance to eat fries again. :-)

"No pants AND they push me around in this big wheely chair? Hospitals rock! Oh wait, what's that OR room they're bringing me into???"