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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!