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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.  ;-)