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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.  ;-)


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! 







Wednesday, April 5, 2017

The Stupid Ass Stuff I Still Do As An Autism Parent.

I wanted to touch base with the Kiddo's teacher and the BCBA at his school.  While they are pretty good about answering emails and communicating in the notebook, there's nothing like a face to face sit down.  As I was driving to my umpteen meeting about my Kiddo, I couldn't help but feel nervous.  It's not me we are meeting about.  Why am I taking it so personally?  It's hard not to when the topic of the conversation is about a person you just happen to have grown inside of you for nine months.

But despite the fact that the Kiddo is twelve and has been in school since the day after he turned three, this is the stupid ass stuff that I still do as an autism parent.  Worry about every single meeting and have that general sinking feeling of "being in trouble" with the school.  I suppose our time at the town's babysitting *cough* pardon me, I mean "middle school" also has not helped with the general feeling of meetings.

And what happened? It was a pretty good meeting. We covered a lot.  There were no real surprises. Discussed a lot of different ideas of what works and what doesn't.  By the time I left I was feeling rather happy about it all.  So what the heck Mama Fry?  Why do I get myself into such states of mind?

Here's another example of the stupid ass stuff I do.  If you have been following this blog for a while, you know all about "WTF Wednesdays". If you don't, well, long story short. Kiddo hates Wednesday because autism.  Honestly. That's all I can say to explain it. It's just one of those thing #TeamQuirky things about him that I've learned to accept.  Anyway, I heard from the teacher today that he had a much better Wednesday than I thought he would. (I had emailed her this morning that he was wound for sound and to give her a chance to either gear up or fake being sick and call out.)  What was different about today? She kept him SUPER BUSY! Like she always keeps him going but she really cranked up the special jobs for him today and he loved it.  Kiddo loves having a job.  She even got him an extra shift at the school store for him to do today.

I was telling my husband this tonight and he just chuckled and said "Wasn't this the exact thing we told the old middle school to do with him? That they never did?".  Yep, it was.  We told them that time and again and they never fecking did it.

So what stupid ass thing did I do? I started brooding on it. I went back full force to that time and place with them when we were all so super miserable.  Why? What is the function of this?  It serves no purpose. We are never going back there. It's pointless.  But yes, let me just get good and miserable for the sake of it. Let me just waste my time and be angry at how they failed him.  Somebody call Cher and get her to slap me and yell "SNAP OUT OF IT" Moonstruck style at me.



Fixating, it's not just for my Kiddo.  I am guilty of it too.  Good gravy, I'm the one that's suppose to be raising him and teaching him how to navigate through a world not made for him and I can't even get my shit together.  I need to write a social story for myself.

"It's okay to remember bad stuff.

It doesn't mean it's going to happen all the time.

Just remember to take a deep breath and order another side of fries."

Then end. :-)
"Geez Mom. You thought I was the one that obsesses too much? Now let me get back to looking up different manufacturers of school buses."








Thursday, March 16, 2017

He may be your client...

But he's my kid.

You see a name on a folder. I see my heart walking outside of my body.

Since November we have been working with a state agency called Perform Care. It was recommended to use by our school district caseworker.  She sung the praises of how much it would help. I eyed her over my glasses because I knew she had no idea how all this stuff works.  Suuuuuure. It would be just that simple.

Here it is, middle of March.  Ask me if a Behavior Therapist has been to my house yet? Better yet, ask me if the caseworker assigned to my Kiddo has EVEN MET the Kiddo?

Yesterday I got to the point of autism parenting that breaks me.  Being so frustrated that I cried while I was speaking. If you get me to that point, your ass better run. I can blow off anger. I can shake off being sad.  Making my mascara run down my face because I am trying to get the therapy my Kiddo needs, I hope you have your affairs in order and have made peace with your maker.

I am so freaking tired of this dance.  The amount of bureaucratic nonsense is astounding. To all the school caseworkers and teachers in New Jersey that say "Call Perform Care" to the parents of the students they serve, I'd like you to know that it's close to pointless to suggest it like it's a solution that will end the problem. The only thing Perform Care has done so far is make me have dozens of meetings and hundreds of phone calls. It is a glorified run around of paper pushing.  Every meeting ends with whatever person this caseworker has sent du jour recommending another thing and whatever that thing is, they don't do. "But call your caseworker!"

I lost my ever loving shit yesterday. All over the phone to multiple people. I keep hearing from them how they serve the whole family and yet the only person in my family that sees or talks to them the most is me.  I didn't sign up for Perform Care. I signed my KIDDO up for it.

And here we are, all these months later, and he still hasn't been seen by a behavior therapist. Each phone call to make another appointment to discuss things means another week is added on to this.  I'm ready to throw in the towel completely with this agency because it's just a lot aggravation with no payoff.

Of course, I can't because I need to have my son in the system. In as many places in the system as we can get him.  So as much as I just want to throw up the white flag and both my middle fingers at this, I press on.

By the end of the day yesterday I had managed to schedule yet another meeting with another agency to come see my Kiddo and maybe they'll be able to offer him services.  I'm not holding my breath and I'm pretty sure in the Kiddo's file is a big note that the mother is a raving lunatic.

I'm okay with that. :-)


Get frustrated. Cry. Scream. Repeat. 


Monday, March 13, 2017

AngelSense. A review and peace of mind.

I am often asked to recommend a good GPS device. One name that I have heard time and again was AngelSense. So I was pretty happy when the company reached out to me and asked me to review their product for my blog and become a part of their affiliate program.  (Full disclosure. They provided me with the device and a few months of service for free.)

Now bolting hasn't always been an issue for the Kiddo till this year. Call it puberty. Call it all the changes in the three schools he's been in less than a year. It doesn't happen a lot but it has happened. He's also in a program now were he goes on a lot of outside the school instructional trips.  Twice a month his class stops at multiple locations on a single outing. Yeah, this "Smother" gets a little worried about that.

I will be very honest. I was extremely skeptical when I received it. It is kind of big but I have to say my son doesn't seem to care. I have it pinned in the pocket of his coat for now.  Come summer I will have to pin it to his waistband of his shorts.  Here is a short video of what it looks like and how to attach it to clothes.  You are given a special magnet key that helps take off the fasteners.  You cannot remove the fasteners without it.  Kiddo tried. That thing did not budge.

Here's a clip of what you get and how to attach it. 


This works in conjunction with a free app you can download to your smartphone.  The app itself is very user friendly. You can also set it up to send you text and email alerts when your kid is "on the go".  Another feature that I loved was it clocks how fast the van/bus goes with my Kiddo on it.

Oh Helllllo Speed Demon Van Driver. Let's have a chat, shall we?  (And now we have a different driver.) 

I can now track exactly where he is on the ride home.  That's pretty handy to know when I have to put on real pants and a bra to get him off the bus. ;-) 

When your child stops somewhere it will notify you and ask you to name it if it's a stop your child goes to regularly. (i.e. School, Grandma's, Speech Therapy, "Window Fries".)  I would say we have pretty much all of his usual haunts programmed in there now.  This has been great on the days when he has that multiple stop class trip. I can see exactly what part of the trip they are on.

Another neat feature. You can "listen in" to your child's environment simply by pressing a button on the app.  You can then listen on your phone to what's going on.  With all the changes that keep happening with the Kiddo, this has been a good feature just to check in on him.  It was highly amusing to hear him rattling off the exit signs on his bus ride to school.  My only complaint about this is it is really easy to get addicted to listening in ALL THE TIME.  (Helicopter Mom much?)  I've managed to ween myself off of this.  It's nice to know that I have it should we need it.  Also, it needs to be noted that what you hear isn't always crystal clear. It can be muffled sometimes but it's kind of to be expected. It's really no different than if you had your phone in your pocket and butt dialed someone.

You get about a day's worth of battery life with this.  It means charging it over night and I have a text alert set up to both remind me to plug it in and to attach it to the Kiddo the next morning.  Also a nice feature as I am Hella forgetful.

Translation: "Get off Twitter and go put the device in his pocket!" 


All in all, I went from "Well, we'll see if this works." to "TEAM ANGELSENSE!"  It's serious peace of mind for this autism mom and I'm kind of kicking myself for not have tried it sooner.   (Especially when stuff was so bad at his old school.)  If you have been following me a while now, you know I don't usually post product reviews or affiliate links. It's usually because the stuff folks send me to review does not live up to the hype.  I don't want to waste your time or money getting your hopes up.  This product, for us, works. If elopement is a worry of yours or just want a little extra security, this is money well spent.

If you are looking to order one for your loved one with autism or just for more product info, click here!AngelSense (Full disclosure. This is an affiliate link, which means I will receive a commission if you purchase this device using this link.) So if you have been wondering about this product, I can say it honestly delivered and then some.

Side of fries for you AngelSense!














Monday, March 6, 2017

Don't be a jerk.

I've been blogging about autism since 2012 but autism has been in my life in some way since roughly 1998 or so.  (I worked in a private special needs school before I had the Kiddo and leveled up.) Here's what I have learned in almost 20 years of this stuff.

Don't be a jerk.

Or an ass. Or a dick. Or the curse word of a choosing.  Whatever floats your boat. I'm not telling you how to live your life.  

But what I will say is it never ceases to AMAZE/HORRIFY me when family act like jerks to those in their family with autism and to their immediate caregivers. Seriously, what is with this crap?  There's not a week that goes by where I don't get an email to my blog saying something along the lines of "My family does not get it. What do I do?" Or "We stopped getting invited to family gatherings because of our kid with autism."  Or the one that really makes me hit the roof, "Our extended family invites our typical kids places but doesn't ask to spend time with our autistic ones."

Let's face it. You have to be a real special sort of asshole to invite the typical kid to something and purposely leave out the autistic one, while hoping like Hell that the parents either don't notice or mind.  I will be the first person to admit that you have to know when to hold 'em and when to fold 'em when it comes to taking your autistic kids places.  You have to be realistic. You're looking at a woman that scheduled her father's funeral around her son being in school because being quiet during a solemn ceremony would just not have happened and it was much better for the Kiddo to stay on his routine at the brand new school he had only just started a few weeks before. 

But this shunning that I see happening far too much in families, that shit has got to stop. It's not just autism families I see this in. All disabilities seem to get a taste of this.  Really?  Aren't we all better than that?  Have we not evolved well past sending all those with any sort of disability off to some institution.  Never to mingle with the rest of the world again. Come on!

Now before you may go "But...but...but... We don't know how to be with those autistic kids.  We don't know what they need or how to do it the right way."  Well newsflash for ya, neither do their parents.  Believe it or not we were not given a swag bag at the diagnosis that comes with an instruction manual.  They're learning as they go.  Join the class.  Learn with them. They are the ones with them all the time.   Consider them the smart kid in the class that you can ask to help you with your homework.

I'll even give you a little cheat sheet/Cliff Notes version on this.  Planning an event where both autistic and neurotypical events might be tricky but it's not impossible.  Clearly parents that have kids of each do it EVERY SINGLE DAMN DAY!  Ask their caregivers what's the best kind of thing for all involved.  That's all you gotta do.  That's it.  Ask.  BOOM! Pretty easy.

And if you think you aren't hurting those kids both autistic and neurotypical when you do this mess, I can assure you, they know what you are doing.   All kids can smell bullshit.  Some might not be able to say it with words but I know that Kiddo can lay some side eye on a jerk that can make that person question all of their life choices.

If you are that autism parent/caregiver that currently has this happening to you, I'm sorry. It sucks. There is no excuse for it. At all. If your family won't change, well, family can be made too. Find your tribe and stick with #TeamQuirky.  You know I'd share fries with you all any day of the week. My Kiddo might announce when it's time for you to leave because autism but you get it. You live this flappy lifestyle.

In the immortal words of George Costanza....





Monday, February 27, 2017

It's okay to feel frustrated.

"They say misery loves company
We could start a company and make misery 
Frustrated Incorporated"
Soul Asylum

Last week Kiddo and I were co CEOs of Frustrated Incorporated.  It was a weird week.  After a four day holiday weekend, there was a whole lot of Monday in our Tuesday.  Kiddo was NOT. HAVING. IT. I was kind of discouraged by that but tried to brush it off as just going back to the routine after four days of doing whatever he wanted.  Then Wednesday was here and I kind of had a little hope it wouldn't be that bad this time because there was a school wide trip to a local kid's museum.  Maybe we could skip that whole WTF Wednesday/let's rush the whole day to get to the thing he wants after school (music therapy).

Nope, it's like I was new here or something. He proved WTF Wednesday is portable and took that meltdown show on the road.   Two solid days of misery.  Surely we can just get back in the saddle for Thursday.  We never see behaviors on Thursdays at school.

WRONG!  Wrong again Mama Fry.  Kiddo decided that he really needed to obsess on getting to school on Thursday and do nothing other than running on the gym treadmill.  (Which is an activity he "works" for. It's his idea of fun.)  So he had gobs of behaviors about that on Thursday and I really was scratching my head at this point thinking "What the Hell is with this week????"  Three in row.  We haven't had that since his days at the old awful middle school.

Friday was better but not perfect either.  Lots of anxiety. Lots of grabbing.  I can't figure out what this is. I don't think there will be an answer to his anxiety or a solution on how to solve it. It's driving my around the bend and I can't help but think if I'm ready to rip my own hair out, he must feel even worse than I do.

Cause this isn't about me but at the same time, I can't help but take it personal. I can't help but get frustrated.  I can't help but get anxious because he has so much anxiety.

All the stuff that we do to help him, I am seeing that all it does is make things worse.  He can't "work" for anything without that becoming part of the behaviors. He starts to fixate on the reward so much that it consumes him.  It already was hard enough to find things that motivates him. So little does. To have these things then become part of the problem makes me feel like I'm banging my head against a brick wall.  We ask for help and this is what we get and it's only compounding the problem.  What are we suppose to do here?

And just when I think we have a clue to the problem and some solutions to nipping stuff in the bud before it starts, he manages to find a way around that too.  It's like he's looking to be miserable.  There is just no other way to explain it. We try not to tell him about big events or switches to the schedule because he gets so fixated on them.  So if we say nothing special is coming up, you know what this kid does? He'll take a run of the mill thing in his routine or day and turn that into the big special thing and fixate on that instead.  It's baffling.

Plus there is the stuff we simply cannot hide from him that he will always obsess on, like birthdays and holidays. I can't exactly surprise him by hiding Christmas or his birthday. Did I mention he's twelve?  So yeah, let's add moody teenage hormones to this mix.

His other big behavior when he isn't in a mood is to just scream, growl, roar and yell.  ALL. THE. TIME.  Constantly. Yes, constantly. He's getting some sort of sensory input from it as well. I have yet to find an appropriate replacement behavior for it. Planned ignoring doesn't work. Addressing it doesn't work.  Mommy losing her shit about it and yelling at him for yelling doesn't work. (Yes, I'm aware of the irony but every Mom has her noise limit.)

I won't lie. It's hard to keep finding the silver lining the longer this stuff all goes on.  When you have a kid who's hobby is waxing nostalgic on all the times life has disappointed him and prefers to find ways to stay focused on frustration, it's hard NOT to join him in that feeling.  And when he's not doing that, he's just screaming so much you find yourself wondering "Is it possible to sprain your ear drums?"  The two moods this week were miserable or screaming like Ozzy Osborne on a bender.  It's stress on a shit sandwich.

The only thing I can do is just own the fact that it's okay to get frustrated with autism. It's even okay for me to feel frustrated with him.  I'm a parent. He's the kid.  That's a tale as old as time. I'm not the first mom that's thought about selling her kid to the gypsies and I won't be the last either. So no, I'm not going to feel guilty or stay stuck in that feeling for long.

It's okay for me to get sad. It's okay for me to get pissed off about it. It's okay because I know Kiddo is going through all this stuff too.

On Friday my husband made the very wise suggestion we eat out at a local beer garden. That idea was more than okay. I married a keeper. 









Friday, February 17, 2017

Kiddo and the new school. An update.

As some of you long timers might know, Fall of 2016 was the year of DRAMA with school and the Kiddo. Long story short, we wound up having to switch schools mid year.  We were really worried about it.  It meant touring schools with him in tow and trying to find the magic combination of one that would take him and one that would suit him best.

We got lucky and seem to have found one that is providing what he needs and more importantly, he likes it! I just realized the other day that almost three months have gone by and I found myself thinking about what's changed. For the most part, it's been steady on progress.  Both academically and behaviorally.  I would even say socially he's a bit more engaged lately.  He scripts a lot about the different staff members there. He even started to wonder what do they do when all the kids go home at night and delights when I say the same answer of "Home to their families! They don't live at school!"

It hasn't been without hiccups.  A few weeks ago we had to make a transportation switch. Kiddo was just not doing well on a bus full of kids just like him.  It seemed to be a ripple effect. One kid would go off, they all would go off. He was butting heads with another kid.  The school and the bus tried various tricks. It just wasn't working. It was suggested the route would be changed but the driver couldn't do it.  It was time to get him private transportation.  Door to door. Just him, a driver and and an aide.

And this was a tough switch for him to swallow because it meant riding in a mini van and not the bus. He really loves school buses. Mainly because they remind him of Thomas trains because they are all numbered.  However, this is what we had to do. I can't have him having behaviors on a bus everyday just because he likes riding the bus.  I didn't sugarcoat it with him.  "You're going on this mini van now to school. Sorry that bums you out but we can't have that behavior on a bus."

It's been two weeks now with the mini van and I have to say, that's been going really well.  I asked the driver "Well, how has it been?" and he told me "He's been awesome. I don't know what behaviors you are talking about. He's been great!" (I had given him a heads up about "WTF Wednesdays".)  I noticed his anxiety on Wednesday mornings before school has lessened too.  So maybe this was a step in the right direction.  If it helps having a shorter route for the Kiddo to go to school, maybe that's something that they can arrange down the road for him to be a on a bus again with other kids.  I also know realistically that's what I want for him too. He's not going to be driving. He'll always need some sort of transportation and it most likely be with other people.  It's something we'll have to tackle with him. Learning how to cope with longer rides. Dealing with other people's behaviors and reactions to his.  We'll get there. I'm just happy that this current "Well, let's try this and see how it works." actually seems to be working.

His school does a lot of trips that focus on independent living skills. I love that they do that. He has to make shopping lists and has a budget. (They have them buy all their snacks for school.) He has to find what he needs in the store and then bring it to the cashier.  Then they all go out to lunch and he has to order his own food.  (That part has been his favorite. If he had it his way, Kiddo would eat out for lunch every day.)  They work on laundry skills and cleaning too. He's been showing off his prowess with vacuuming.

Another part that makes me happy is all seeing the academic work that they do.  It's clear to me this teacher follows the best rule about autism, "Presume competence."  They do social studies, science experiments,  spelling tests, etc.  All the stuff any middle school student usually does.  (And in his case, all the stuff that his old middle school wasn't even bothering to do.)  He has homework again! He grumbles like any 12 year old would about having to do it some days, but hey, I'll take that milestone.

My favorite part is that they have put this Kiddo to work.  A busy Kiddo is a happy Kiddo. He has a job at their school store, which sells snacks and drinks. He loves it!  I like to ask him "What was the hot seller today?" and he usually happy to report that Cheez Its are still the big seller. On Thursday the teacher had him delivering flyers to all the classrooms in the school and he loved doing that because it meant also getting to do his favorite hobby, wander the halls and saying "HI!" to everyone.

We still have bumps and bruises.  It's not perfect but it's progress.  I feel a lot more hopeful than I was a few months ago. Fingers crossed that this feeling keeps up.

Kiddo chilling with a classmate over a mutual love of trains. 





Thursday, February 16, 2017

"Well maybe we can do something about that."

I don't want to keep writing about this current administration but dammit Trump, you are NOT making this easy. I live a pretty stressed out life to begin with, so folks who are complaining about the current state of affairs as being too much I kind of snicker at them. Our lives has been in a constant state of "Oh my god! What's the next fire I have to put out?" since the day "autism" first was mentioned to us.

Yes, I won't lie. I'm not feeling confident where things are going.  Things were kind of "meh" with autism and Obama.  Things now are kind of at a "WTF?!?!" level for me and this guy.  All I keep hearing those is to wait and see, which is HILARIOUS to say to an autism family.  We do not have the luxury of "wait and see".  I also keep hearing to give it a chance.  Can you hear the side eye I am giving that statement?

But then he has to go have a meeting with Betsy DeVos and a bunch of educators.  It's one of those PR things where it's less about what's being said and more about taking pictures and getting sound bites for the media.  All presidents do this.  All the folks around the table are introducing themselves and he gets to Jane Quenneville, who is a principal of a Virginia public school specializing in special education and mostly, autism.  He decides he needs to ask more about autism. Okay Donnie,  You have my attention.  If you want to watch the video clip, check it out here. Trump/Education meeting.

Okay, he's asking about the increasing rates of autism.  Yes, that is a good question to ask.  What I have a problem with is actually a couple of things. Let me make a list. Blog readers love them some lists.

1)"It's a really horrible thing to watch." Yeah, Hi Donnie. Is my Kiddo a "horrible thing"? I don't think so.  You may not have meant it like that but DUDE, that is exactly how it came off.  Once again, let's play the "Autism is a great big scary monster that we need to avoid at all costs.!" card.  The problem with that thinking is how in the hell do you think we can get the rest of the world to accept our loved ones who have autism if we accept this kind of thinking? So yeah, I call you out on that DOOM and GLOOM talk because it does not help.

2) Once again who is being asked about autism? Not an actual autistic person. Call me silly but I would think if you would want to know MORE about a topic, that would be a good place to start. While I can appreciate an educator with actual experience in the field, it seems to me our boy Donnie is missing a step here.  Perhaps if he talked to an autistic adult or two, he would realize that referring to autism as a horrible thing to watch is kind of insulting to autistic people.

3) He ends the exchange with "Well maybe we can do something about that."  What?  What exactly are you going to do?  This is such a BS line I could fertilize my lawn with it.  Again, I get it. This is one of those photo ops that presidents do but give me a break. Is this suppose to be the sentence where I am suppose to fall to my knees in gratitude? Cause I'm sorry. I need MORE details than that.

4) Will the government ever realize that these autistic kids of ours do this outrageous thing called "growing up"?  Yes, spoiler alert Donnie!  All these kids that you are trying to show concern for are going to become adults.  I know! Shocking! In fact, many of autistic adults NOW are under or unemployed.  Many depend on Social Security and Medicaid just to get by and it's still not enough.  You want to something to do about that?  How about addressing that issue!?!?

He may be worried about the increasing autism rates. I'm more worried we once again have a president who doesn't have a freaking clue about an entire population that lives in this country.  Stop spinning the topic of autism for your sound bites and actually DO something!

Till then, no fries for you Donnie.  No fries for you.

Here's another thought. A little less tweeting. Less screen time at night. You'll sleep better  



Monday, February 13, 2017

"Those were the days."

A friend of mine on Facebook shared a meme that says "Growing up in an Irish household there was always two choices for dinner. Take it or Leave it." I suspect this is where I'm suppose to write "LOL" in the comment box.  Part of me agrees with the attitude in a way. My mom aka Granny Fry, didn't put up with a lot shenanigans.  However, she did know when to pick her battles. The likelihood of me ever eating fish? None. She'd serve me something else. Would pizza ever pass my brother's lips? Not a chance. She'd boil up a hot dog for him.

And despite both she and my Dad being the children of fresh off the boat Irish immigrants, I am pretty sure my father would have filed for divorced had she ever tried to boil cabbage in our home. (Kind of happy that was a rule now that I think about it. Have you smelled that? It's like death meets hot garbage.)

This take it or leave it mentality doesn't work in our lives.  Despite it being so black and white, which is funny because in most cases we dig some serious black and white type choices.  (And black and white cookies but I digress.)

I'm not driving myself batty to get my kiddo to eat the same dinner as I am because of a mind set from forty years ago.  We'll set our own house rules thank you very much. Can we stop romanticizing the past as some sort of end all and be all of how to parent?  We used to NOT put kids in car seats.  Want to take it or leave it on that too?  Don't get me wrong. I loved long car rides home at night in my parents station wagon cargo area. My brother and I would pretend to be in the Millennium Falcon and shooting at all the other cars headlights till we past out and then just rolled around all willy nilly on the Garden State Parkway.

My brother was always Han.  I thought I was Princess Leia but I'm pretty sure he thought I was a Wookie. 



Anyway, would I do that now?  HELL NO. So maybe past ideas aren't always the best ideas.  I mean, I would love to draw on the experience of my parents but they also thought that buying a BETA VCR instead of a VHS one was a good idea.  Also, they never raised an autistic kid.  So I really can't turn to what they did and that's okay.

This goes right along with that other "Copy and Paste" status update I see folks sharing of "My curfew was when the street lights went on." and all that nostalgia jazz. No, I don't think the Kiddo has less of a childhood because I don't allow him to roam the neighborhood without supervision.  I simply cannot allow him to do that due the nature of his disability. Happy to hoover right over him if it keeps him alive.  Yeah, I know. I'm fussy like that.

And my personal favorite is the sheer irony of folks posting about kids using iPhones and tablets by using THEIR OWN  iPhones or tables.  "We had outside!", they cried as they scroll on their smartphones, inside their homes.  Bitch please, your parents happily plopped you down in front of the Atari 2600 many a day.  Don't act like you grew up on zero technology.  (Video pinball rocked!)

Folks get old and see folks younger than them doing stuff differently. This is a tale as old as time. I'm not going to take it personally when they give me grief but I'm not going to stay quiet about it either.  I get it.  A guy just won an election based on this thinking of the past was great and we can make things great again.  I'm just not so sure what he means by that.

The new stuff becomes someone else's old stuff soon enough though. Folks thought Prohibition was a good idea once.  I'm pretty sure we wouldn't be so hot to revisit that.  (Parents and teachers everywhere would revolt.)



I'm not sure where I'm going with this other than I am just going to enjoy my moment of complaining about people complaining.  It's what Archie Bunker would have wanted.






Sunday, February 5, 2017

Services are as plenty as unicorns.

If you are new to autism, I have a bubble to burst.

SPOILER ALERT:  There are no wealth of services to help autism families.  I am not tripping over free stuff to help my kid.

EXTRA BONUS SPOILER ALERT: The older your autistic kid gets, the less there is out there for them.  What's exactly is less than already not that much? I was never very good at math.  Hit me up with that term if you know it.  I lost interest when that math teacher of mine was always looking for "X". (Give it up, Teacher. If "X" wanted you around, you would know it. Stalker.)

SUPER DUPER BIGLY SPOILER ALERT: There are many fine people that do work in schools and social services for our kids and I'm pretty sure they don't even realize just how little there is.  I really hope this is the case because I can't imagine working in a field that has that little to offer and KNOWING that there's often jack shit for a family.  (If you do, props to you. I'm in awe you go and do your job anyway.)

So if you have been following our story, Kiddo started at our district's middle school this fall and it was an utter clusterfuck. It was a glorified babysitting service and he made it be known LOUD and CLEAR that he was not having that. They didn't know what to do with him and so we left.  We are now in a school where they are actually challenging him academically and socially.  So far, it's been a good situation.

But we are still dealing with leftovers from the school district.  Before leaving, our caseworker helped us sign up for Perform Care, which is program in New Jersey.  It was SUPPOSE to help us get in house behavior therapy and some respite for us.  That process started in November.  It took till the last week of January to actually get a therapist in here. Yes, the wheels of that service turn slowly.  Respite? Hahahahahhaa! Like that will even happen in my lifetime.

Fast forward to now and I have a completely different Kiddo on my hands.  His anxiety isn't as bad.  What I needed then, I don't now. Plus even if I still did have a super anxious Kiddo, I still didn't get the BCBA that I needed.  I got a social worker.  A very nice social worker who my son very much likes but it's not what he needs.  If my son had a different type of functioning level, maybe this would have worked.  However, he does not. She's limited on what she can do with him and pretty much every thing she had in her arsenal, we've been there, done that, and made out the sticker chart.  Even she this week was like "Yeah, umm, I'm going to ask for BCBA to come in." cause she's got nothing.

I go to talk to my caseworker who keeps referring to a form I filled out months ago and I keep repeating like my own autism script of "But this isn't the kid he is now.".  This agency keeps referring that I need to have support too. Great, I get that but even the supports are for newbs!  He offered a family support person (kind of like a mentor) to me before and brought it up again.  This is a woman that told me she would explain things like "What's an IEP?"  Ummm, dude. Kiddo is 12.  Catch up. Kiddo's social worker gave me a list of blogs to follow.  I then had to come clean with who I am and how I have my own blog.  I appreciated the effort of what they are offering but to an Autism OG we need something past "Autism 101", ya dig?  Yeah, thanks for telling me about groups like Autism Speaks. I've written for them. Next!

The thing that is going to support me the most now is to get Kiddo what he needs.  Like what about getting a behavior therapist to come to my house to witness the utter magic that is "WTF Wednesday"? I get it. I'll need someone to come early in the morning to see it. I'm willing to make them coffee. Heck,I'll buy named brand frozen waffles for them. I'll even gussy myself up by putting on real pants and a bra.

And are there no college kids who are trying to get some field experience to pad up the old resume for when they graduate that could use a job as a respite worker in the state of New Jersey? I find that hard to believe as someone who was once a psychology major and saw those job offer notices on the department bulletin board all the time.   This is what I asked for months ago. It's February.  Still, nada. Nothing.

What I keep finding is a lot of sociology double speak. A lot of meetings, phone calls, and forms.  Not a lot of actual practice. This is how those folks who do stay on waiting list eventually get what they need.  Cause folks like me say one day "Fuck it." and just walk away from this less than bare minimum.  I'm getting frustrated and pissed off. If I can't get what I need for him now, what's it going to be like in coming years? (YUGE SPOILER ALERT: AWFUL!)

Oh I know, this is when someone will tell me about the large amount of charities and churches that maybe, just maybe, might help my Kiddo. Cause you know, it's not like he's entitled to any governmental service like every other citizen in this country. I mean, that's just silly. We'll just have to rely on the kindness of strangers reaching into their pockets that day. That's a solid plan!  What could possibly go wrong?

If actual services were as plentiful as Legos we would be set! 






Monday, January 23, 2017

Barron Trump

"Do you think Barron Trump is autistic?? Why won't his parents say?" 

STOP. Just full stop right there. Zip your lips. I have some things to say to all of you asking me this and I have the receipts.

First of all, Barron Trump is a ten year old child, whose life just got twisted upside down much like The Fresh Prince of Bel Air without the benefit of having DJ Jazzy Jeff as his homeboy. Think about it. Who are his peers here that he can go kick it with? Like his life prior to this wasn't complicated enough?

Second, who the Hell are you to start clocking his neurological make up from afar? Cause seriously folks, that's what you are doing.  I don't care if you are some fancy schmacy doctor with degrees up the wazoo.  You don't get to diagnosis and then share it with the world.  Nope.   Let me put it in terms you can understand here.  Would you like YOUR doctor to run out in front of you and announce to all that could hear your weight, your blood pressure numbers, or that little infection of yours you picked up from Spring Break '94 from that guy who's name you don't quite remember but you remember to stay clear from Jagermeister shots ever since?  Yeah, it's like that.  It's your body. It's your choice. It's your business.  It's Barron's brain. It's Barron's business.

Third, what about his parents?  They could do so much for the cause and awareness and could slap a puzzle piece on the American flag or something.  It could help so much.  Yeah, I'm sure it could or it could also be a clusterfuck.  What if these were the parents who's ideas about different neurological make ups are down right abusive and dangerous? You really want them representin' #TeamQuirky?  Cause we have already had  a few of those well known celebrities who haven't exactly helped the cause. *coughs Jenny McCarthy cough*

You also don't know where any family is in their (and God I hate using this cliche but here I am having to use it) "journey with autism" or journey with anything because again, we have no idea what this kid has or does not have.  Not all families are screaming it from the rooftops from the get go or even the long go.  It took me years before I was comfortable discussing autism and the Kiddo.  It was up to me to decide when I felt like sharing about it and it's up to them to do the same.

Finally, check yourself.  Check your privilege.  Why are you making such a big huge deal out of this one kid? That what he may have is something that his family is hiding and it's super bad! Gosh darn it we have to tell everyone because you got all Inspector Gadget on YouTube clips about him and you're going to expose it!  How does this even matter to you and your life?   This is putting further stigma on those who have different neurological make ups.  It does not help the cause.  It hurts it.

I already told Betsy DeVos she doesn't get any fries.  Don't make me take away yours too. I will. No fries for anyone.  I will make you go sit in time out and think about what you did to a ten year old kid.

Listen, I did not vote for this kid's father.  In fact, in many ways what his father stands for is pretty much everything I am against as a person.  I will say this.  Back off Barron.  Back off any person, child or adult, that you feel the need to Web M.D. diagnose drive by on.  It's simply not your business.  Period.

I suspect that even Barron isn't buying that "Alternative Facts" line Kellyane Conway.  Just sayin'. 

Wednesday, January 18, 2017

Dear Betsy Devos,

We need to to talk.  Please, sit down.  Kick your pumps off.  Get comfy. We are about to have a "Come to Jesus" conversation.

Now, I don't talk politics all that much on my blog. In fact, I tend to avoid it because I know everyones newfeed is flooded with all that jazz and my audience probably enjoys a break from that stuff.  I am sure there are many folks right now that are rolling their eyes that I am going there and I know for a fact many have stopped reading this already because they are already composing their rebuttal.

To those folks I say "Don't forget to write the part about how you are going to unlike me and not follow me anymore but you keep coming back to keep arguing."  Ya'll know who I mean. I love those folks.  They are THE BEST.

But I digress.

Betsy, Can I call you Betsy? Okay, anywho, no, I didn't vote for Trump. (Anyone shocked by this statement may I remind you I frequently quote drag queens like religious scripture? I mean, really? Did you think I was a conservative person? Come on.) But anyway, Nope. Didn't vote for the guy but he's in charge and so yeah, I am watching who he picks for cabinet stuff with a serious case of side eye and "Okay, who is dis guy/gal?"

Now you don't exactly have a lot of typical qualifications that one would think one would need in order to be the Secretary of Education but I was thinking you would probably be prepping yourself for your hearings.  Like you would probably hire some folks to school ya on well, schools and stuff.

I was mistaken.

Or you need to get your money back because

GURL, HOW DO YOU NOT KNOW THAT THE IDEA (Individuals with Disabilities Education Act WAS A FEDERAL LAW?!?!?!?!?! HOW?!?!?!   How on earth could you even suggest that this is a matter to left up to the states????  HOW!!??!?!?!?!?!

(If you all haven't seen this clip from the hearing, I highly suggest watching it.  Devos Hearing)


Let me explain how IDEA works, shall I? It is to provide students with disabilities, a free and appropriate public education (FAPE) in the least restrictive environment.  That both teachers and parents will help create a tailor made plan for that child to learn.  We call these IEPs. Individualized Education Plan.

Betsy, even suggesting that this be a matter left up to each state.  Holy crap on a cracker!  You have no freaking idea how bad of an idea that would be to millions of kids.  So many families are fighting tooth and nail as is for FAPE for their kids.  You want to make that even harder for them???  WTF!?!?!?

Seriously, think about this.  You want whole families to uproot their lives and pick up and move to different states???  You actually think this is doable? Or fair? Or that this wouldn't then become a huge drain on a state's already limited resources if ALL the disabled kids moved there?  DUDE!!!!

Betsy, Betsy, Betsy. No. Just no.  I'm going full on basic bitch with you right now. I literally cannot even with you but I have to because this is MY KIDDO's future you are messing with here.  Just stop.  STOP!

I don't say this often but no fries for you Betsy.  No fries for you.

And don't get me started about guns in a school because of all the grizzly bears attacks. 









Sunday, January 15, 2017

Is it a scam?

If you didn't think that having a child with autism was overwhelming, try figuring out the best ways to treat and support that child with autism.  In the time it will take you to read this blog post, several new studies will have come out on what might have caused autism. (Newsflash. I don't care. Seriously, I don't.  I've written about that here. "I don't care what causes autism."   )  

It only stands to reason that for every new cause study that comes out, a brand new sure fire treatment for autism will follow.   The variety of which will be vast.  From diets to therapies to gadgets.  Where the Hell do you even begin with all that crap? Seriously. You find out you're having a kid, you at least get a baby shower out of that.  Where's the"Autistic Kid" registry?  Why can't that be a thing?  It needs to be.  All of us old timers could stop by with a covered dish and shower you with chewelry and books that are actually good. The dress code would be "pajama casual/no bras" cause we get it. 

Every time a new "thing" comes out, I can betcha dollars to donuts that my inbox will get filled with messages from friends and folks asking me "Hey, did you hear about this new thing?"

Followed ALWAYS with "Do you think it's a scam?"

And because Autism is freaking expensive, every parent is usually thinking this because we have been burned so many times.  I've written about that here. Autism, some accessories sold separately. Our hearts and our wallets can only take so much.

But since we've been doing this autism thing for ten plus years now and I have some autism tenure, here are some of the things I have learned that may or may not help you when trying to figure out what to spend your money on for your kids.

1) Not everything is a scam but not everything is going to work.

2) There is no way to know what those things will be the things that work. It doesn't matter what it did for my kid.  We're talking about your kid here.

3)Not one damn thing is going to make autism going away.  Spare me the "recover" double speak of the snake oil gimmicks.  Notice they never say "cure", they use words like "recover" to scare the crap out of you. If that's part of their sales pitch to you, flip 'em the bird and walk away.

4) The only thing these things MIGHT do is help lessen some of the more severe symptoms of autism.  (Like dude, if a lavender oil spray on your kid's pillow makes them happy, spray away.)

5) If all this stuff was so rip roaring good, wouldn't it be sold everywhere?  I've yet to see the autism aisle at Target.  I should know. I go there enough.  So again, I look at everything with some serious side eye.

Now I don't mean to be a downer about all this stuff but I just want to remind the newbs to be realistic with this stuff.  If it was that easy, why aren't ALL the parents doing it? You know what I mean?

It also doesn't mean you shouldn't try something. We still try stuff all the time with the Kiddo.  Some stuff has turned out to be awesome. Like going to music therapy.  Others?  Not so much so.  The diets? HAHAHAHAHAHA! Listening therapy? Nada. Chiropractor care? Zip. Braincore Neurofeed back?  Yeah, Kiddo made the guy running it his bitch.

But I still tried it all because not trying would mean not knowing and I had to know.

For as black and white the autistic mind can be, figuring out the best ways to support your loved one with autism can be filled with a lot of gray.

Kiddo at the latest "Let's try it." Shame too. That chiropractor was a good dude.