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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 then 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. 





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. 


Thursday, August 10, 2017

August Angst Part Two. Electric Boogaloo

*clock strikes midnight ushering in August first*



August. I freaking hate this month.  If you follow me on Facebook, you know already that Kiddo hates Wednesdays so much we have dubbed them "WTF Wednesday" because we have just grown to accept that the day is going to suck donkey balls.  It's just how it is.

How he feels about hump day is how I feel about August and Autism. It is not a good combo. Not a good look for the House of Fry.  Not. At. All.

I do not know what it is about this stinking month but the Kiddo, like clockwork, falls apart every single year.  Maybe it's the ending of ESY and the long stretch of no structure ahead.  Well, no structure from school.  Trust me. Mama Fry runs a tight ship around here. Correction, Kiddo runs a tight ship around here.  Maybe it's being away from his classmates and being an only kid makes him feel lonely. Maybe it's the planets being out of sync with the Sun and the position of the Moon.  All I know is, it's it's consistent with being Hell wrapped in chaos topped with a mayhem bow.

But we power through because despite me trying to convince my doctor that I need to be placed into a medically induced coma for the month, I have no choice.  I'm not really taking it one day at a time but more like one moment at a time.  It's all I can do.

What I do have in my corner is a little help from the state's Perform Care system.  We finally have some people coming to the house to work with the Kiddo and it's been going pretty well.  We have successfully gone through the stages the Kiddo getting to know them. Phase 1, act adorable. Phase 2, act mischievously. Phase 3, question everything. Phase 4, raise HELL. Phase 5, Accept the fact these folks are coming to the house.  The honeymoon period was definitely over when he first melted down hard in front of them.  He usually only saves that for folks he loves, so honestly, they ought to take it as a compliment when he tried to lunge at them.

Since it's going well, we're adding to it.  Behaviors are our priority right now, followed by being an independent person a close second.  It's also made me aware that while I need to add more of that to his routine, we need to end some of the parts of his old one.

Like finally breaking up with the magical speech therapist who graduated from Hogwarts.  You may be thinking "Isn't this the one that gets him to eat all sorts of different foods? Are you crazy?? Wait, she'll have an opening. Does she take my insurance?"

But it's absolutely time.  Speech wise, it's as good as it's going to get with him.  I knew there would be a time where we would have to make choices like this.  When to stop things even though those things weren't completely fixed or done or I don't know what to call it.  I've had to break up with therapists before.  (Read all about it here.) I don't know how this is going to go over with the Kiddo as he absolutely adores her and I have a mad respect for that woman. I'm sitting here thinking "Can I bring a six pack to the final session? Cause she's really earned it."

There's a small part of me that's like "Girl, why on earth are you making a big change like this in August?" but I also know that I accommodate my Kiddo A LOT. Delaying things a month or two isn't going to give him what he needs.  If things are going to be topsy turvy,  might as make the changes that need to happen anyway.

Oh August, you make me your bitch every year. I know I've said it before.  Autism is easy. It's the anxiety that comes with it that needs to go kick rocks in flip flops.

Wish us luck and a quick month!

Sunday, July 30, 2017

Where should I move to get the best autism services?

If I had a dollar for every time this question was emailed or tweeted at me, I'd have my Kidd's co pays for speech therapy paid for life.  Heck, probably enough dollars to hire the speech therapist to hang out at my house for the weekend.  (Which I bet she would game for because she knows I have a pool and a bar in my basement.)

It sounds like such a simple question and one that shouldn't be so complicated to answer but like most things with autism, it is!  It should be black and white but it is not. Which is ironic seeing as autism thinking really doesn't do well with shades of gray.

The thing is, there's no magical list one can produce to answer this question.  Now I am sure there is someone right now reading this thinking "No, there totally is this article I found online about what states and school districts are best and which ones are the worst. Let me go link drop it and not read the rest of this piece even though Mama Fry took the time to write.  I have other things to do, like answering Buzzfeed quizzes to find out what shape of pasta I am.".  Link droppers, hear me out.  That's the first part of this.  That article you think sums it all up? There are so many of these articles written at different times and from different sources. It's almost overwhelming the sheer volume of them.

I totally get though why so many people ask this question.  There are multiple reasons why.  Some move because of work and don't want their kid's getting screwed over.  Some do it because they have HAD it with their current school district and figure it has to be better somewhere else.  Here are just a few things to think about before accepting some article you found online as the gospel according to autism school districts.

1) The different types of disabilities.  We all know the cliche. You met one kid with autism means you have met only one kid with autism.  Meaning, my Kiddo is different than your kiddo.  My child's needs can be and often are completely different than any other child's.  Kiddo is no longer in my town's middle school but there are other students there who have disabilities.  That school was unable to meet his needs but clearly they are meeting other students' needs.  At least, I hope they are but I'm thinking their parents would yank them out if they weren't, ya know?  It boils down to my Kiddo is very different than theirs. If that school is working for them, good.  So while I might share our story of how it rolled for us (like a bus over our heads), it's just that. Our experience. It's not the only experience one can have there. Which brings me to my next point...

2) A school district and experience can change drastically in the years your child attends.  As I mentioned above or if you have been following our story for a while now, the transition to middle school was, for lack of better words, a clusterfuck.  Now had you asked me about our school district  prior to that point like when he was in the town's early intervention preschool or his kick ass elementary, I would have been helping you pack to move to my town.  Those two schools were fantastic with the Kiddo and his needs.  Again though, it's just our experience.  There were other families I know that weren't getting what they needed or wanted for their kids.  No place is perfect.  If you asked me now what I thought of my town's middle school and high school program for special needs students, I got a middle finger salute answer for that.  I had no idea it would get that bad once he hit that age.  It was not something we wanted to have happen but at least we were able to find a private placement for him that gives him the supports he needs.  (And more importantly, the school district pays for it.)   Which leads into my next point...

3) Money. It's all well and good if someone declares "So and So district is the best district your kid can go to for school."  Can you afford to live there though?  Will you be able to change jobs and/or careers that easily?  We couldn't.  We're a one income family and my husband is a small business owner with partners. He is also only licensed to do his job in New Jersey.  To up and move to another state wouldn't be a breeze.  Not by a long shot.  I know we aren't the only ones in that kind of situation.  Sure moving to another state might help some problems but it could open up a whole other can of worms Like...

4) Family and friends that support.  We have my family in the local area and my husband's family a little farther away but still close enough that if we needed help, they could pitch in.  My mom has watched Kiddo vacuum her house many a time while I run around doing errands and my brother has had the Kiddo sleep over from time to time so Daddy Fry and I can have a date night here and there.  A pal of mine helped me out last summer watching the Kiddo for an hour because I had an autism speaking gig and my husband had a late night at work.  (Which Kiddo loved cause she cooked SO. MANY. FRIES.) My point is, we have some help when we need it.  I don't know about you but having that around is important.  Support like that can be hard to find and you can't always count on the next school district to solve all your problems because...

5) Good teachers in bad schools vs. Bad teachers in good schools. This applies to just about any student in a school, autistic or not.  There are fabulous teachers out there who empty their wallets and their hearts into a classroom and more often than not they are not in the fancy pants school district.  This is not to say that the teachers in the "better" ones are slackers though and I'm sure there are many a teacher in a "bad" one that's just given up or don't care.  Sometimes it's just the luck of the draw who is teaching your kid. I think it's pretty well established that a majority of the people going into education aren't there for the money. (Mainly because there isn't any.)

Now I know me bringing these things up probably doesn't solve the problem or answer the question on where to go but I bring them up because I think folks often forget them.  My best advice (not that you asked but hey, you're hear reading this anyway) is GOOGLE. Google the area and "autism" and see what comes up.  Hop on Facebook, type that area and autism into the search box and see what groups and pages pops up.  If you have no plans to move and you're staying put, answer questions about your area that people might post.  Don't answer ones were you don't know an area but your cousin's boyfriend's kid lives there and they said... You know what I mean.  Just stick to your turf.  If someone new moves into your hood and they are on #TeamQuirky, get to know them.  Be that "HOLY CRAP. HELP!" support person because you have been there.

Remember, we're #TeamQuirky, we take care of our own. We're kind of like the mafia but without guns and we're sleepy.

Kiddo knows we're not moving out of New Jersey ever.  I'm not leaving a land where I don't have to pump gas in my car.  43 years old. Never done it once. :-) 


Sunday, July 16, 2017

Sometimes I blame autism.

If you have been following us on social media, you know that we just had a whirlwind of pain, agony, dentistry and autism.  It's not a good combo. Kiddo managed to crack his two top front teeth while at school. How? I blame autism. Let me explain.

Upon earning his final token to get a reward he had been working for, one with high value, he got what I like to call "flappy happy". He jumped out of his seat and started bouncing up and down like Tigger from Winnie the Pooh. This is kind of a common thing to see with folks with autism.  When they feel an emotion, they feel it right now to their toes.  Sometimes it's a sign to me that the Kiddo is starting to get a bit overstimulated by a situation but more often than not it's just him expressing how he feels and it's usually when he feels AWESOME!!!

However, what was not awesome is what happened next.  In his flaps and jumps he tripped over an area rug in the room and his face slammed into a locker in the classroom.  BOOM! Top teeth cracked. As horrible as that was, Kiddo was less concerned about his physical well being and more concerned about missing the upcoming "water day" event that was happening at school that day.  Because that's just how his autistic mind works.  He was patched up by the school nurse and given the clearance to go.  They called me at home to tell me what happened and honest to God I wanted to cry. Mostly because he was hurt but I will be selfish but real here. Dental work and the Kiddo?  It's a fecking hot mess.  Just awful. Absolutely awful.

You see, he's done this move once before. While laying on his back in bed he dropped the iPad and it's very heavy case on his face and chipped one of his front teeth.  So this was not our first rodeo with major dental stuff.  In fact, it only happened about a year and some change ago.  So not only did he just knock out ALL the dental work from last time, he cracked another one too to boot!  Skillz!  My Kiddo has 'em!

And while I was on the phone arranging for an emergency appointment to get him seen by his dentist group I was really feeling sorry for myself.  In order to fix this the last time, we had to do sedated dentistry and that took, no lie, FOUR MONTHS to set up.  It is a giant pain in the ass.  One look at my Kiddo  and his new and improved hockey goalie smile he was sporting made me want to just crawl under a rock and hide.   (If you want to read about that adventure, you can check it out here.  "Talk is Cheap"

I kind of figured that was what would have to happen again but there was no way on earth this Kiddo of mine could live like this for a couple of months. It was bad.  Like really bad.  I got the confirmation of this when the dentist called his partner in to consult on what to do with him.  When they have to call for backup, you know it ain't good.  Kiddo managed to crack them both well enough that they HAD to do something for him today. No complaints from me but how the HELL were they going to do in the office?  They're both looking at me like "Well Mom, you know him best.  Think he'd let us get in there if we used some Nitrous Oxide aka Laughing Gas?"

Ummmm, your guess is as good as mine? I really had no idea.  That was never offered to us as an option before.  It was "Your kid cannot do a basic cleaning without four adults holding him down. Sedation.  ALL OF IT." At this point though he is in a crap ton of pain that he's actually admitting to,(He's got a crazy high tolerance for pain. He once dropped a bowling ball on his foot and kept bowling.) his jagged teeth are slicing up his lips and tongue repeatedly, and I'll admit it, it was kind of shocking/icky to look at this busted looking smile.  So we had to at least try.

This is when this dental group really rocked.  Though they typically close early on Fridays in the summer, they stayed open late for the Kiddo. This is the power of the Kiddo. He can frequently charm folks into doing stuff like this. Or maybe they just felt really bad for us. I'm not sure but I'm just glad they did. I just had to keep him entertained for the next three hours, we could come back when they were closed and they would attempt it. We had nothing to lose.  So I juggled because what else could I do at this point?   It gave me time to try and explain what was about to happen to him.  Oh and I got the EXTRA fun of not letting him eat for the next couple hours because of the work they were about to do.

Kiddo was pretty anxious before they started but there was something about the situation where he actually seemed to understand that this was a thing that they had to do. He got in the chair and allowed the dentist to put the Laughing Gas mask on him and HOLY COW, now I know what my Kiddo would look like if he was stoned.  If there was any silver lining in this, it was the entertainment of this Kiddo on Laughing Gas.  He could not stop giggling and singing the whole entire time. Including the time she had to take the big needle of Novocaine which made me feel woozy just looking at her do it.  I thought this would be the moment he would lose his collective shit.  Nope, just went along with it. I WAS IN SHOCK!

This is when the dentist said "Okay, this is what we're gonna do." and she rattled off a very basic check list for him about what work was going to be done so he could "check it off".  I loved her for that.  She kept the X-ray bib on him to act as a weighted blanket. I gave him one of his favorite fidgets to hold and we just went for it.

Now it wasn't perfect. He had moments here and there of trying to grab her hand but I was able to take his hand and hold it down without much of a fuss on his part. His aim was pretty punch drunk so he really couldn't grab her.  We did LOTS of singing and at one point three grown women were serenading the Kiddo the best of Thomas the Tank Engine songs.  There was a point towards the end where I almost started crying because I couldn't believe that we were actually almost done and that he had done it without needing full sedation.  I was so stinking proud of him.  I was practically beaming. I couldn't wait to tell all of you Fries because I knew you were going to get why this was such a huge deal.

Then we were done. I don't know how on earth we pulled it off but we did. From two cracked teeth to two brand new perfectly formed ones.  I could tell even Kiddo was pretty damn proud of himself.  Not gonna lie, I was also beyond grateful in my wallet as doing it without sedation was so much cheaper.

It was only later at night when I started feeling very guilty that I had just spent the past twenty four hours blaming autism.  I started thinking how it was the flapping from being overstimulated part of autism that caused him to get hurt in the first place.  It was the sensory issues from autism that made getting even a simple teeth cleaning an ordeal.  I spent hours through all of this being pissed off that a behavior through autism had hurt him and it was autism again that would make treating the injury even more difficult. I blamed the communication issues that come with it because I was convinced he wouldn't understand what needed to be done and he wouldn't really be able to tell us what was scary to him.

Sometimes I blame autism and then I blame myself for placing blame on a part of my son that he has no control or say about. I might as well place the blame on his left elbow or the freckles on his nose.  Autism is just part of the package.  You would think I'd be used to this stuff by now.  Maybe I should have asked for a hit of that Laughing Gas. ;-)

Kiddo celebrated being a brave boy in a #TeamQuirky way. Tackling dental drama and getting my stairs cleaned? Is this Heaven? I think it is! 









Friday, June 30, 2017

Dr. Williams and the wrong Autism Mom

"Oh cool!  I got a bunch of comments on my blog while I was sleeping. Must be those Australian readers of mine. Let me go read them and...Aw feck it.  Not this crap again!"

A little backstage view of my blog for you.  Every few days, my blog and social media gets slammed with this jackass who claims how this doctor can cure my kid.  Yes, I report the comments as spam and block the accounts but it sure doesn't stop them. Let's just say they have a fixated interest in me. 


Dr. Williams and your magical cures, I have HAD it with you.  Officially.  Now given how much you post on my blog and all the weird hours that you pop up, I know you're an overseas scam.  I'm pretty sure you're also a Nigerian prince who just needs help transferring money that is rightly mine due to a crazy ass story you spin that I am somehow related to you.

I have written previously about this sort of thing. He was a lovely fellow. You can read about that here.The List  You really ought to read it.  I'll wait.  I'll go get a coffee.

Are you back? Super! Anyway, in that previous installment of bullshite cures I was feeling very generous that day and blocked out the contact information of the person and their sales pitch from Hell. That guy actually sent me his phone number and as tempted as I was to share it with the world so all of you could give him an earful, I figured causing his voice mailbox to explode would be kind of mean.

But this "Dr. Williams" guy?  Well he seems extremely eager to hear from all of us as he posts his email publicly everywhere.   I think it's time we give the good "doctor" exactly what he is craving. LOTS OF ATTENTION!

You see "Dr. Williams", we the autism community are tired of snake oil salesmen and scams.  We are completely disgusted by people like yourself who prey upon families. We are sickened by folks like yourself that try to make a buck off of fear.  We have had it with folks like yourself who try to make autism look like a big scary monster.

The thing is "Dr. Williams", you messed with the wrong bitch. I have quite a few fellow #TeamQuirky folks that have my back.

So, since you seem so eager for pen pals, allow me to print your email address nice and big so we can all see it and send you some notes about what we think of you and your "product".

Drwilliams098765@gmail.com

Have a nice day "Dr. Williams".  (Oh, it case you weren't aware, that's Jersey Girl for "Go Feck Yourself.")















Monday, June 19, 2017

"Ways I Have Failed Bigly with Parenting a Kid with Autism."

Hi! If you haven't figured it out by now I really suck at all this. If anything can come from my failures, it's that  you can read blogs like mine and learn how to avoid doing stuff like this yourself. I'm like a walking PSA!

Take today for example. We finally have a therapist that's coming to the house to work with the Kiddo and so far it's been great! Kiddo really likes her and she has him doing all sorts of stuff. It's been great because I learned a long time ago that Kiddo will usually be extremely willing to learn and do stuff with a person that didn't have twelve hours of labor with him only to wind up having a C section and is still numb around the scar site to this day. (Not that I'm bitter or anything. It's just one of those things of his. He likes to "perform" for them, the attention junkie that he is.

Miss "J" has started showing him how to make his bed independently.  Last week, he was really pleased with himself and for a couple of days, kept it up. Proud of all that work. He didn't want to mess it up.  Of course, like a lot of stuff, he starts sliding back to his old messy ways.  I saw this morning he left it unmade and I left it like that knowing she was coming over.  "They can work on it later."

I should have checked the bed.

Like really, really, really should have checked the bed.

If you find yourself in a similar situation, check the bed.

So she goes in there with him to work on it again and she discovered pretty quickly that the blankets and sheets were wet.  Meaning he wet the bed and me, being a clueless dope, left it there on his bed all damn day for her to discover.

I wanted to crawl under the covers and die but I couldn't even do that because they were covered in pee. Really Kiddo? Like, really?  I passed a kidney stone while pregnant with you with NO pain medications to keep you safe.  This is my "thank you"?!?!?!

"Okay, we're going to learn how to strip the bed. Got sheets?' and like a trooper she had the Kiddo come on over and strip the bed.  She made him feel the damp parts and said "This is wet.  This is what wet sheets feel like."  and I hastily brought in a fresh set and ran out of his room with the wet ones mortified.

She doesn't get paid enough to touch my son's peed steeped sheets. She does not. I need to find out what kind of liquor she likes because damn, if she didn't earn a cocktail today.  Oh my God "J", I am so sorry. So very, very, very, sorry.  I will never not check the bed again.  I swear.

Folks, learn from this huge failure.

ALWAYS CHECK THE BED!

Kiddo busy looking up clips on YouTube on ways to get your mom to make your bed for you because life skills learning is a drag. 



Saturday, June 17, 2017

School's Out For Summer!

Holy smokes! It's the end of the school year.

This bears repeating.  We are at the finish line of the school year from HELL!  Amen and Jesus take the wheel because I don't know how the heck we got from where we were to where we are now.

Oh, I know.  We left the craptastic middle school and found a place that actually gets him and has these novel educational ideas like following his IEP and doesn't keep him confined to the same classroom all stinking day.  Hmmm, imagine that.

I've never had a school year that felt as long as this one did.  I'm sure it's because we have all been through so much but I'm not gonna lie.  I am happy to see this one wrap up as I am OVER IT! As I type this the Kiddo is doing his usual pacing route in my kitchen through the living room, self talking a mile a minute his exact schedule down to the last minute of his last day of school.

Kiddo's exact plans for the first day off. He's been practicing on the weekends. Yes, he is in there. 


The part that kind of bugs me the most?  I kind of feel like we lost half a year of schooling.  So much was bad that the rest of the year was literally just picking up the pieces. Time is the enemy with autism and it kind of kills me that so much was spent on stuff that should not have happened in the first place.  I know a bunch of you right now are thinking "Is this chick named Elsa because she needs to LET IT GO!".  I wish I could too.  It's exhausting being sad about something isn't it?

We have an exciting few weeks coming up though. We're headed out on a road trip to a family resort that we have been to before and loved.  Daddy Fry and I must check the website for it everyday, just staring at the pictures like it's our own social story.  Hell, we even had a whole conversation on what poolside cocktail we're going to order first. Kiddo is making his own schedule of visiting first the outside pool then the indoor one with french fry breaks in between. I look forward for not making a bed or cooking a mean for a couple of days.  If there was ever a vacation we earned, it's this one.

Then it's right back to school for the Kiddo when we get back.  Extended School Year aka "Summer School".  Now don't you feel bad for him for going. He has gone every year to ESY since he was three. He doesn't know any other way and frankly, a busy Kiddo is a happy Kiddo. That wraps up mid August though.  That's when sh*t will get interesting.  Over four weeks off before school starts again.  Yeah, I'm panicking already about keeping him busy. I'm considering renting him out to vacuum at people's houses. Hey, he's good at it and he's mooched long enough off of us. ;-)

Can't wait for the Kiddo's music therapist to teach him this one. 






Monday, June 5, 2017

$103,500

This is the cost for my Kiddo to attend his out of the district placement.

For one year.

Not including door to door transportation. From what I can gather, add about another 30 to 40 grand to that total.

My town's Board of Education had it's "big" meeting a few weeks ago and the budget is made public online.  Anyone can look it up in their meeting agenda. Which because I'm nosy I did but also because I know my town.  This is usually how I find out big changes are happening.  True to form, I learned that my son's caseworker is leaving.  She didn't tell me.  The meeting agenda did.  Had I not looked, I still would not know.  She still hasn't informed me.  I do not even know who is replacing her. Guess it will be a nice surprise for me one day.  Gee, so swell of ya school district.

But let's get back to that figure shall we? How do I know it?  Well there is a list of every single student that goes out of district and where and the cost. No, it does not list the students by name but since it lists one tuition and and the cost of a one to one aide at his school's name, I know it's him.  He's the only student in my town that goes there. (Currently.)

And you know what I learned with running my eyes over this list?  That it's a loooong one.  There are easily over thirty students going out of district for their education.  Now I know not all of them are kids with autism but given the rates in the state we live it (New Jersey is 1 in 41), I bet a good hunk of them happen to be on #TeamQuirky.  I started adding up the costs and when I hit around TWO MILLION DOLLARS, I stopped.  These are financial terms a Costco shopper like myself cannot put my head around.  Two million loads of laundry, that I know.  Two million dollars and counting??? Are you freaking serious???

Now we are damn lucky because our district pays for Kiddo to go to his school.  I know so many districts would be "NOPE". I am not knocking that at all.  What I question is doesn't the Board of Education see a whole lot of money going out of their district just to teach the students that live in the district they represent?  When the figure goes into the millions, shouldn't this be alarming? Or at least make them say "Hey." or something??  If my cable bill goes up, I tend to notice that.  You all aren't seeing this part of the budget rising?  I'm watching this part go up every single year.

Of course, since the budget went up the mommy grapevine started going. My own social circle of the Autism Moms Mafia were sending texts and emails back and forth saying the same of "HOLY CRAP! Is that the tuition for one year? Just the one??? If they don't pay it, then what????"  Then what indeed.  Cause despite this whole school choice/voucher thing that our pal Betsy DeVos is going on about, I don't exactly have the spare 90 plus grand a year to make up the difference for my Kiddo to go the school of our choice. If they did not pay, there is no way on earth short of selling both my kidneys and all the eggs in my ovaries that we could.  (And I'm pretty sure I need at least one kidney and I'm getting up there in years so no one is going to pay top dollar for my old lady eggs even if I list them as "vintage".)

Oh and get this.  Kiddo's school was ONE OF THE CHEAPEST!  The cheapest!  We actually did them a favor by picking where he went out of all the schools we toured. We saved them money.  YOU'RE WELCOME SCHOOL DISTRICT!  You're welcome.

But you know the worst part of this. Now knowing the exact number of the cost of his education (and all the other kids) I live in fear of what I just discussed above.  That some BOE member is gonna be all "Wait a minute.  We need a new football field or some sort of sports thingie. What? We don't have the money?  Oh wait, let's start slashing the budget."  You and I both know where their eyes are gonna land. And it will be done in that "Gee, do all these kids really need their one to one aides?" way or suddenly some of us will be told that our kids have magically improved so much that they can go back to their district.

Despite that fear though, not on my watch. Don't even think about it. My Kiddo is worth every freaking cent of that $103,500.00. He's 13 now and he'll be in that school till he is 21.  You better budget accordingly and tell the football team to hold a mother loving bake sale if they need something.

 My Kiddo and his education are more valuable than that.

"Dear Board of Education, There is a complete lack of french fries on the lunch menu each month. Please correct this atrocity."



Tuesday, May 23, 2017

Parenting PTSD

Parenting Post Traumatic Stress Disorder.  I swear to God.  This a thing. You cannot convince me otherwise.

AND I am not just saying this is one of those "Only Autism parents get this.".  I'm betting those Neurotypical parents get this too. We can't claim everything.  (Come on, you know if I don't say this one of them is bound to get their knickers in a twist over it. Oh shit. They're probably reading this too.  Just kidding NT parents.  Mama Fry is just being shady!) 

But "BECAUSE AUTISM", I can only speak about the parenting experiences I know.  Case in point. Every time one of you lovely and good looking readers send me an email or leave a comment telling me your story, so many times I go from "Gurl, I feel you!" to "HOLY CRAP!!! That's us!".  I am thrown right back into that place of worry, fear, and anxiety.  Even if the topic in question is something way in the past.  I have literally felt my chest tighten, my breathing quicken, and my head starts to sweat. (Which is annoying as feck because I have enough going on, let's ruin my hair on top of it. I'm from New Jersey for Christ's sake. You know how important hair volume is here?)

If you have been reading this blog for a while now, you know we have been in the mists of a loooooooong ass back and forth with New Jersey's Perform Care, a group that's suppose to help out kids like mine.  So far our experience has been that they neither perform nor really care. Honest to God,  I have never seen so much bureaucratic paperwork nonsense.  Countless meetings about what they are allegedly doing for my son without actually doing anything.  A lovely caseworker comes by once a month to tell me everything I already know but gosh darn it, he's got to get my signature on his chart that he saw me.  It took SEVEN months to get a therapist in here but finally we got one.  What did she bring with her?  A lot of early intervention memories that come flooding back.  Here we are again, therapists in my house.  Herding the dogs into a bedroom.  Trying to keep one area of my house clean so that it doesn't look like a dumpster on fire. A Kiddo that's delighted for the first few moments that they are here only to turn on the cranky side after twenty minutes because it's not fun anymore, it's work.   He knew she was on the schedule of things happening today and in his mind it was checked off as "done" the moment she walked into my house.  Hearing him whining and asking when she will leave every five seconds, makes me feel like a failure.  I wince every time I hear him complain and think "Oh Jeez Kiddo. Come on. DO you have to be that rude to company?" Of course, I know she's not company and it's not the first time she's probably heard complaints like that from a client but I can't help how I feel based on experiences I have had.

I feel bad too because it's his house. It's his safe spot.  It should be the one place on earth where he feels the most comfortable and happy and he's not.  Therefor, I feel just as stressed out as he is feeling and it sucks! I did not miss this shit. There's something to be said to going out to a therapist office.  You can kind of leave all that crap and junk at the door once you leave to go home.  Plus, I have to wear a bra and real pants while she is here.  That's a drag.  In my own house. That ain't right.

This week his school will be going to a local minor league baseball team game.  Should be fun right? Or it could be seen as returning to the scene of the crime.  Kiddo had a pretty EPIC meltdown at that place when he was a lot younger with us.  Bad enough for us never to return to the ballpark again. You have no idea how glad I am that I don't have to be on this trip with him.  I gladly hand this outing over to his teacher.  It's also on Wednesday, as in "WTF Wednesdays", as in the day that Kiddo hates more than any other day in the week BECAUSE AUTISM. Even though I'm a lucky bastard who doesn't have to go on this field trip, I know I will be wound tighter than a clock the whole day till he comes home.

Because autism, parenting PTSD flashbacks happen.  A lot. Sometimes they hit hard, sometimes you ca shake it off.  Either way, staying stuck in them doesn't help you and your kid.

If there was a soundtrack trigger to Parenting PTSD, it's anything from the Disney Pixar genre. 

Wednesday, May 10, 2017

Forgive

"Forgive, sounds good. 
Forget, I'm not sure I could. 
They say time heals everything
but I'm still waiting."  
Not Ready To Make Nice by the Dixie Chicks

It starts with such an innocent interaction but once again I had to play bomb squad and diffuse a situation about his old school. It's rather astounding that as much as we try to push forward and move on from it, we can get dragged right back to that horrible time in an instant.  All it took today was the sweet high school aged student that works the cash register at the local pizza joint to ask "Do you go to "W" middle school?"

We go this pizzeria every week after speech therapy. It's our thing. Probably started because I brought him there once and because autism, we are going there infinity.  I use the routine to our advantage. Making the Kiddo request what he wants and pay. The staff has gotten used to us and is patient with him.  I consider this a walking autism awareness educational opportunity.  So it wasn't odd for this young employee to want to ask him questions to be friendly but I'm betting she wasn't expecting his eyes to bug out of his head and yell "NO "W" SCHOOL!!!!!" in a sheer panic.  I quickly jump in and explain how he goes to a private school in another town and Boy, it's getting late, we got to get going and get home and Gee, it looks like rain. Better hustle. Thanks again! See you later! and I pretty much bum rush the Kiddo out of there to my car hoping like Hell we won't get into it about the school.

The ride home was a bit dicey. Him, constantly repeating that he doesn't go "THERE" anymore.  Me, reassuring him that he won't and also trying to explain that the question from the girl wasn't mean or really that out of line.  Let's move forward.  We were able to get home and he tucked into his pizza and I did some deep breathing in the kitchen that I narrowly avoided a rather explosive meltdown.

It also made me incredibly mad and upset.  He left that place in November and yet the fear is still there.   The pain is still very much raw, for the both of us.  I'm emotionally exhausted from when I have to play not only his Kiddo to English interrupter but also his "fixer". I never realized how many times I would have to be explaining his emotions to someone or in this case not so much explaining them but just trying to redirect the whole exchange.  The gal at the pizza place is nice but explaining that whole story to her?  Yeah, not happening.  Wrong time and place.

And I can't help but wonder when will I or Kiddo for the matter stop getting upset from these innocent exchanges. It's really hard to teach the Kiddo the idea of "forgive and forget" when I'm pretty sure he'll never forget.  While I'll most likely forget to do the simplest tasks like switching the wet clothes from the washer to the dryer, how my son was terrified of a school and that look on his face is etched in my brain. It's kind of hard to forgive a place that traumatized your heart that walks outside of your body.

All these months I have been purposely driving out of my way NOT to drive by the old middle school with the Kiddo in the car. I guess I'll keep doing that.

I however, have no problem when I am alone in the car to give it the proper one finger salute it deserves.  ;-)


Sunday, April 30, 2017

Today I was told...

Today I was told not to push my autistic son into situations where he would be uncomfortable and I needed to listen to autistic people. The thing is though, I did.

"The most important thing people did for me was to expose me to new things." Temple Grandin

If you don't know who she is, Dr. Grandin is the OG autism advocate. "A Loving Push", as she describes it. So I have and I will continue to do so because I have seen the difference this has made in my son's life. We've had success and we've had utter clusterfucks. I'll still keeping pushing though because the good outcomes are worth it. If it's good enough for Temple, it's good enough for The Kiddo.

I guess what you mean is I'm suppose to listen to autistic people but only ones you agree with.


Today I was told that I should not talk about any co morbid issues that come with autism during autism awareness month.  However, for the life of me I have yet to meet an autistic person that did not have any other co morbid issues or challenges.  Not to mention, isn't the point of awareness to clue folks in that autism comes with other issues?  If we don't talk about these challenges now, exactly when are we suppose to address these needs?  I will talk about these challenges this month and I will talk about these issues always.  If we don't talk about them, that's how the one sided stereotype of autism in the media and general knowledge will continue. Yeah, not on my watch.

So if you want to go around doing that, feel free.  I'm not.


Today I was self involved to air my feelings publicly. Well Jeez Honey, any writer of a blog knows that already. You're not exactly telling me anything that I don't already know.  Blogging, for the most part, is pretty self indulgent. I suspect you are concerned about "What if he read it one day?".  Fair enough and here's my response to that.  If my son can read this blog and understand it, all of it and get completely pissed off, I will sing "Amen and Hallelujah!". I will be absolutely thrilled that he was finally able to develop the comprehension needed to do so.  It will mean years of therapy, education, medical intervention, blood, sweat, and more tears (Mostly my own.)  than I can count actually worked. It will be validation that we actually made the right choices in his care and upbringing.  It will mean he is an independent, free thinking, self reliant person who is able to take care of himself.

That's all this autism mom could even hope to happen.  I will gladly pay for his future therapy bills and you can go about yelling "I told ya so." all you want. I'll be happy AF!


Today I was told my son wasn't autistic enough. I will add this to the times I have been told he simply too autistic to participate in activities and school environments.  All these years I have been living this Team Quirky lifestyle with him and now I find out there are levels of autism.  Well color me surprised!  Is it like the difference between a Muggle and a Mudblood in the wizarding world? Cause this Harry Potter fan can totally follow that.

Is Autism SPECTRUM Disorder some sort of video game with different levels my Kiddo has to earn?  Is there an app for that? Color me confused here but I thought the "Spectrum" part in the name meant there was more than one way to be with autism.


Today I was told by my son that he loves me and that is the only thing I ever worry about hearing. Feel free to keep telling me how I'm doing it wrong.  I mean, that's how this self involved blogging thing works. I write. You comment.  It's the circle of lifeeeeeeeeeee...

Today I am kind of glad it's the last day of Autism Awareness Month. Bet you are too since I just spent the past thirty days screwing it up. ;-)

Playing a little piano with the sheet music upside down. As you do. 

Saturday, April 22, 2017

Sad

I am not sad because my kid has autism.

You know what I'm sad about? It's all the other stuff that comes with the autism that can get bent.  The crippling anxiety, the obsessive compulsive disorder, the sensory processing issues, the hyperactivity, and the one that makes shit really freaking complicated, the intellectual disability.

Ya see, this is the kind of autism that doesn't get talked about in the glorious month of Autism Awareness.  Or at least I haven't seen it because my social media feeds is swimming in all the feel good inspiration memes.  Or the token stories of an autistic person that has some special awesome talent.  Which is cool. I don't begrudge these memes or stories but they are just so constantly one sided.  It's hard to feel hopeful and renewed when I know that this will never be our story. Not even close.

I have an almost 13 year old kid who still believes in Santa Claus and the Easter Bunny.

I have an almost 13 year old kid who still watching Baby Einstein when he wants to unwind.

I have an almost 13 year old kid who's bedroom looks like the Island of Sodor exploded in it.

I am not sad that he's not into typical teen aged boy stuff.  Although, to be honest, I'm not sure what that would even be.  What are they into?  They seem like such mysterious moody creatures but I'm pretty sure it's not searching for out of production Blue's Clues DVDs online. (Thank you sweet baby Jesus for eBay.)

I get sad that even when I am planning something that should be a fun, it's coupled with so much stress and back up of plans in case it goes bust.  Since it has so many times before. It makes me not want to go anywhere some days and I really have to talk myself into pushing him and myself outside our little comfort shell and try.  Plus, Kiddo has a built in bullshit detector. He knows when I am faltering. Just for once I would love to just be able to say a thing that should make him happy and not have to pull out a social story to go with it.

I think what gets me the saddest is that for every "feel good story" that I see my "civilian" pals sharing, I wonder do they really get what the day to day grind can be like? No mainstream media is covering that story.  The worry, the stress, the frustration.  Guess what folks? It's not fake news. It's our life.

And you know they aren't the ones reading this blog.  It's cool you guys are here but man, I kind of wish they were so they could get it.  I'd invite them over but that has it's own stress filled complications. Unless they bring "window fries because well, fries.

That's the stuff about autism that I want people to be aware about.

Here's your token inspirational shot of my autistic Kiddo walking a long journey.  Wait, I forgot to slap a puzzle piece on it!