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Sunday, December 30, 2018

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. 




Friday, November 2, 2018

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.




Tuesday, September 18, 2018

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! 



Tuesday, September 4, 2018

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. ;-)






Sunday, August 12, 2018

#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.









Thursday, August 2, 2018

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 

Tuesday, June 26, 2018

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.