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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. 





Thursday, November 2, 2017

Dear Anxiety

Fuck you.  Seriously, go fuck yourself with a rusty shovel.  I am so fucking sick of you and what you do this family and more importantly, to my Kiddo.

It's a fact that you are very contagious and I'd really like to send you packing for good.  All it takes is for Kiddo to be anxious and then everyone else in this house is as well. I had no idea how easy you could spread in a family.  I think you run through a house faster than rotavirus.

It's just not fair that my Kiddo's life is ruled by you and no matter what we do to counteract it, you just keep chipping away at him and at us.  Therapy, medication, diets and all matter of intervention.  You never go away.  You merely quiet down and recharge for the next round when you will hold my Kiddo hostage once again.

And I am so God damn tired of running interference with you. As soon as I see Kiddo start to pace and script like a mofo, I know you're making yourself known. He's trying hard to battle you with the coping skills that he has learned.  Some days you stay at bay but more often than not, you win.  Then you take that win and rub it in our faces.

Plus, you've added a new weapon to your arsenal.  Now you get him freaking out so badly that it effects his whole body. He's now throwing up/gagging because of you.  I can't tell you what a freaking delight that's been.  Every other day, dealing with vomit and cleaning him up.  I'm all about a "Better out than in." way of thinking but this is getting ridiculous and kind of gross. I've gone from researching what mystery virus this could be to "Okay, go throw up. Get it over with.". Yeah, I'm really winning the "Mother of the year" award over here. I'll be sure to collect it once I've done this 47th load of laundry you help create.

My Kiddo just wants to be himself. I just want him to be himself.  I am so tired of living on edge because of you.  You make our lives miserable. Worse yet, you take up so much of our time and energy that we start to forget the good things we have going on.  I don't want to be that miserable person.  I don't want to dwell in the negative but for Christ sake, you make it hard not to be that way.

I've come to terms long ago that our life would never be typical but it just seems like each passing year, a new level of "WTF" gets added to the mix. "Oh, you just started to feel slightly confident in your parenting a special needs child?  Let's LEVEL UP, BITCH!"

How much more are you going to take from him? How much more are you going to demand?  Cause I'm done trying to negotiate with you. I tired of seeing you drag us down to your level. I'm tired of what this has done to my Kiddo and to my marriage.  I'd tell you go to go fuck off forever but no matter how many times I said it, I know you won't go.

Can I just say you are one of asshole of a roommate? I don't know why I am asking you if I can. You certainly didn't ask if you could stay and yet you do.  If you're not even gonna chip in on the rent or the medication we all have to take because of you, GET OUT!  Seeing at Daylight Saving Time AND a full moon is headed our way this weekend, hurry up and pack.

Sincerely with no love,
Mama Fry




13 years we've been on this Island of Sodor and even my dog can't believe it.


Sunday, October 15, 2017

ALL ABOARD!!!!!!!

I'm feeling like I hopped on board the Crazy Train. Let me tell you why.


We, the special needs parenting community are not saints. We are not special people picked by the Lord to have special children.  We are no better than any other mom or dad that is doing their thing.  Even the phrase "I don't know how you do it." doesn't really apply to us because on most days we're not sure how we are doing it either.  You just do it because it's your kid and of course you would just do what needs to get done.  We aren't perfect.  We screw it up. A lot. We disappoint our kids and ourselves.  We try again.

I guess what I am saying is we really are just like those neurotypical parents.  There is really no difference between us at all. What is different are the standards to which we seem to be held.  Ones that are often created by those who do not have a special needs child and THAT is when we have problems.

This different standard of parenting needs to end because personally, it's making me bat crap crazy and I'm really tired of feeling like I'm always the crazy one.  To paraphrase the great Ozzy Osbourne's song "Crazy Train", "Crazy, I just cannot bear. I'm living with something that just isn't fair."  Because  autism is many times often unfair with what it deals a person who has it and the loved ones around them.  There are many gifts but I'd be lying if I said "Oh golly gee. It's perfect. No complaints!!! All good in the Autism hood, yo!"

I'm tired of all of us getting shoved into this sainted parent box because it makes no sense.  While some will be more than willing to polish our halo, often those same folks can be the ones heaping on judgment for stuff that they simply cannot begin to understand.  You can't tell me I am both a amazing special needs parent who was just destined to be the Kiddo's mom while at the same time asking me "Why isn't he on a special diet?  You should really try the diet I read about once in a an old People magazine while I was at the doctor's office. You know about the diet, right?" and be sighing and rolling your eyes at me because I won't put my Kiddo on a diet that didn't work for us in the first place.

Do folks realize the crazy mixed messages we get when the same folks that stopped inviting our kids to play dates and birthday parties are the same ones telling us "Oh my god! Have you watched Atypical?!?! Your blog was in it!"  (Yes, I did. Yes, I knew about it. Yes, I have a screen shot of it as my laptop screen saver.)  It's just like my family is some sort of holiday decoration you all only take out when you want to celebrate all things Quirkymas and then promptly put away when you are done.

I guess I'm just feeling extra sort of, mmmmm, I don't know, a walking autism info kiosk lately. I know part of that is my own doing. Hell, look what I blog and write about for a living. I get it.  I made part of that box I am in.  I guess it's just lately I am just so tired of the standard we seem to be held.  Especially when we weren't the ones that set it.

Well, this blog is all over the place. I guess I'll go back to listening to some music with my ear buds in while Kiddo watches "The Polar Express" again.   And yes, he does watch it every night and yes, it would be a BIG deal if he didn't and no, it's not hurting anyone if he does.  So save it if you are about to comment on our bedtime standard around here. ;-)


Living with the Kiddo is like living with Ozzy Osbourne. They're both loud.  They're both musical. They both ROCK! 




Thursday, September 28, 2017

Toilet Talk

There's no fluffy smooth intro here.  Let's just get down to it. My Kiddo has to pee and sometimes when I am out and about with him, I have to pee too.

Now when he was little, no one batted an eye lash at me bringing him into the ladies room with me.  In fact in most cases he was one of many little boys who were in there with their moms.  I didn't and still don't care when I am in ladies room when I see a little boy in there. I'm thinking of my bladder, not some other kid's wiener.

The thing that has happened is Kiddo has started to grow up. I know!  How rude of him to get taller, bigger, and more adult looking by the minute.  I don't remember telling him he could do that at all. I still want him to be the little tot in a one piece romper stomping around like a Godzilla in those chunky white toddler shoes who would run away yelling like some pint size Braveheart going off into battle.  Usually after someone would turn on one of those loud as feck hand dryers of doom.

Alas, it is not to be.  Instead I have a 5'4 lanky teenager with hair legs and a rapidly deepening man voice following behind me in many a bathroom because why?

AIN'T NO WAY I AM SENDING HIM TO MOST BATHROOMS ALONE! In fact, I have started to map out my errands based on places I know that have single stall restrooms because I can send him into those easily and I know he'll be fine.  Plus, for me, it's not just sending him into a men's room by himself that I have to worry about. I have to go too. So you want me to run into one restroom while he's in another and hope like Hell I can get in and out fast enough so he's not alone by himself because he finished first because despite it being 2017, women's restrooms will always have the longer ass wait! (Seriously ladies. Why is that?  What are we doing in there that's taking so long?  Oh! I know! It's because we're having to bring in our kids with us.)

In certain public locations, he's coming in with me and if you are the general public, you have two choices.  You can either deal with it OR you can help us out by telling businesses to make more "family/gender neutral bathrooms".  Because your bladder is not more important than my Kiddo's. Or mine.  So until we have some more family bathrooms, he coming in with me.  My Kiddo has autism, is intellectual disabled and has limited communication.  There is a reason why I have to be a Smother Mother. It's to keep him safe. If you are concerned he may see you NOT wash your hands, that's on you.

And you know what? I kind of hate that I have to do that too. He's 13.  He doesn't want to go in with me. I know it and yes, I can see women in there doing double takes when he's walking in with me.  Trust me, I will make sure he puts the seat back down though.  I'm trying to raise that boy right.

After all these years, I don't give a flying crap anymore if you give me and my Kiddo a look in the bathroom. I will be the first one to tell you "Take a picture. It'll last longer."  Seriously though, what would you rather me do?  Never leave the house? Never go to pee? Sorry, you're not worth a UTI.

More of these, less of judgement. 






Thursday, September 7, 2017

I hope it's a better year.

My social media newsfeed is a slew of "Back to school" shots.  Kids posing in their brand new outfits and lunch boxes that they will soon lose. Some smiling.  Some sulking.  It's cute. It's adorable. It's nice to see a bunch of good looking kids ready to take on a brand new year.

And I can tell you just by looking at the photo if they are autistic or not.  It's not by how they part their hair or how they hold a book bag.  It's how their parents caption their picture.

"I hope it's a better year."

Seriously, there must have been ten in a row that said this.  Each time I saw one, I'd checked.  Yep, a fellow #TeamQuirky member.  Over and over again.  Parents of the typical kids would just caption it as the first day of whatever grade and move on. Some of them even go super fancy and have the kids hold up a sign they made which I cannot do as I can't even draw a straight line with a ruler. Parents of autistic/special needs, just try to get their kids to sort of look at the camera and take whatever shot that they can get. I can bet you dollars to donuts that there was a photo shoot and there were about 20 other shots on their smartphone that they scrolled through before deciding on that one as "good enough". They have other things to worry about, which is pretty much everything else related to school.

And good Lord, do I get this. I get this so hard. Last year at this time things were so bad in this house and at his former school.  Just getting him out the door on the bus was a freaking production that left me drained by the time he went off to school.  Plus, I couldn't even catch my breath because I was waiting for the dreaded phone call to come.  Which it did, nearly every single day.  The personal best being from the principal on the second day of school telling me how "out of control" he was and I needed to come get him.  She treated us like we had somehow pulled a fast one and scammed him into her school.  No one there seemed to understand him or our shock at how bad things were.  They didn't know him or us.  They thought that this was the status quo. This went on for months till we found him a new school.

I can't even believe that an entire year has gone by since then.  He is happy. He is thriving. He is still loud as feck and a ten gallons of hyper in a five gallon bucket. He is The Kiddo. The one we know and love and is actually eager to go back to school.

Despite knowing he is in a much better educational placement, I still can't help but feel anxious.  I'm trying to hide it from Kiddo. I'm putting on a show of "Yay! School!!" but inside I am still freaking out. He went happily on the bus and according to the teacher it was a great first day.  I'm just hoping it stays that way.

I'm just hoping it's a better year too.


Sorry, I have no picture of me dancing in the street singing "Brand New Day" from The Wiz. 


Sunday, August 27, 2017

Do you know how hard we worked for that "Hi!"?

In an effort to help keep the Kiddo busy and for me to stay a bit sane, we went away for a couple of days to a resort that has an indoor water park.  We've been to it before and the Kiddo absolutely loves it.  We like it because it's just big enough to keep him busy but small enough to keep him contained or be "on" him if trouble or an autism misunderstanding comes up.  He was pretty excited to go. I was excited to not have to cook for a few days. It was a win/win all around.

One of the times Kiddo and I hit it alone so my husband could go get his presidential history buff on and go spends a thousand hours touring James Buchanan's house. Despite enjoying all the numbers that go with the presidents (Number 15!), that is pretty much where the Kiddo's interests ends.  Since that home was without pool slides, that was not an activity for him.  I was happy to go with the Kiddo to the park because I knew he would be happy. I was happy my husband was getting his historical jollies on without having to rush or tend to autism at the same time.  I also knew he would tag me out later and take him out and I'd put my feet up and read. It's how we do vacations.  A non stop game of "Tag, you're the responsible adult!".

It wasn't too busy when we hit the park. I set up camp with our towels and stuff and tried not to think too much about the soup of kid pee and germs I was most likely wading in. This seemed to be the visit where Kiddo really didn't need me to run autism interference.  At all.  He patiently waited his turn at the slides.  He didn't cut in front of any other kids.  He followed the rules of no running and making sure he got out of the way at the end of the slides as soon as he went down them so the next kid could go.  After a good fifteen minutes I realized I could get out of the petri dish umm I mean, pool. I could go sit down! (In a seat with the best vantage point to see the whole area and be by the one escape route...ummm... I mean, exit.)

I could be like one of those parents of those neurotypical kids.  GASP!  I know.  So bizarre.

But because I am still a "Smother Mother", I made it a point to lap around the place now and then to keep tabs on him and make sure everything was okay.  This is is when I noticed that the Kiddo was in fact trying to be social.  In his usual way, he was pretty much ignoring/tolerating the kids.  He's never going to be the one to engage first. That's just him.  However, he does gravitate towards adults. I think he kind of understands that adults are "in charge" and will gladly lead him along to where he needs to go.  Be it in a conversation or when it's okay to be the next one to go down the really big slide.  As I expected, I saw him trying to engage with the only other adults in the River of Ringworm. The lifeguards.

"Hi Lifeguard!"

He might not know your name but he knew who you were.  He knew you were in charge and keeping all the kids safe. (Well safe from possible drowning. There was nothing they could do to save someone from the "Lake MRSA" they were swimming in.)  So every time my Kiddo passed by one he would stop and say hello.

We were in there for about two hours that time.  Guess how many said "Hi" or "Hey" or "Do you know anywhere else that is hiring because I can't soak in this giant pile of exploded swim diapers another day?"

None. Of. Them. Not that I saw. Not a single one.

Now, I get they are at work. I get they can't be having full conversations every single time my son swims by them.  They have to keep their eyes on the water.  Not a single one of them could smile and say "Hi" back?  Like take the 5 seconds and greet a kid. Is it that hard to do? Do they need a social story? I have plenty.  Seriously, I travel with them.  I have an app on my phone.  You never know when you are going to need one.

But here was my Kiddo happy to engage with another person, multiple times, and he was being ignored. Now because he is the original gansta of giving zero fecks, he would say it again and again.   He wasn't going to let it hold him back or get him down.  I can't help but wonder what he is thinking about it though.  We have worked so hard for years to get that kind of polite spontaneous engagement out of him and here's his moment and Pfffft. Nothing.  No response. No acknowledgement. Was he wondering to himself "Well, what's the point of all that work they keep making me do in speech and in school about how to be polite and then no one does it?"

Since I have had the Kiddo I have noticed that adults often ignore other kids that aren't their own.  I mean, I get it. If I hear a kid screaming somewhere I do the quick check of "Is that mine? No?" and breath a sigh of relief that I don't have to be "on" in that moment.

 Now that I have a Kiddo who has worked so freaking hard to get where he is with his speech and communication, any kid that starts talking to me, I answer them. It takes little effort on my part. We as adults are always on kids to be respectful to adults and yet when they are friendly and say "Hi Lifeguard!", they get ignored. It's kind of hypocritical, don't ya think?  So that's how I pay it forward into the universe and say Hello back.

Because it's the freaking polite thing to do and shit.  Be nice and say "Hi" to my Kiddo.  We worked hard for that god damn "Hi". Spot him a head nod or a ""Sup?" back.  It won't hurt you.

I might though. ;-)


Kiddo climbing the steps to the slide so he can jump in to get a fresh coat of kid cooties all over him.