Wednesday, December 21, 2016

Always snowing

A friend of mine on Facebook recently moved from a warm climate to a cold one.  She posted a beautiful picture of her family's new home that was covered in fresh snow.   A friend of hers warned her to make sure to stay home in the snow storm and stay off the roads.  To which another mutual friend who lives in a another pretty snowy state replied:

"If you stopped driving every time it snowed, you'd never leave your house." 

I chuckled when I read it but I also sighed.  This is our life in many ways.  There is always a "snow storm" of some type blowing through this autism house.   While it's easier and sometimes safer to stay home, that does a number on your mind too.  Certainly doesn't do your kid any favors either.

I often find myself wonder "Damn, just how long is this winter gonna be???"  The ten thousand hours days that start anywhere between "Dark Thirty" or "Oh My Fecking God O'Clock".  The events that you have carefully planned that explode in your face because the slightest thing was amiss.  I understand that there will never be a moment where I can just think "There, it's all fixed now." but the last few months have been a constant Blizzard of things for lack of better words.   I get that when we learned  Kiddo had autism that life wouldn't even go back to "normal" and we would have to learn to adjust to the "new normal".

It just seems lately that whenever we adjust to a "new normal" the Kiddo is like "NOPE!  Let's change it up. I don't want you getting soft." I'm guessing puberty hasn't helped with this.  Spending that time in the old school with staff that clearly didn't give a crap about the special needs population.  Switching to a new school, just start getting settled there and then my father dies.  Start to slowly pick up the pieces there and then it's the holidays and all the craziness that comes with it.

This morning was the cherry on top of the shit sundae when he woke up in a pretty good mood only to discover that the Internet was not working.  It was an area wide outage. There was nothing we could do other than offer our phones and our data plans to him for comfort.  But this is a Kiddo who wanted his iPad to work and no other devices were acceptable.  So we just kept hustling.  A long walk with the dogs.  A long foot and hand massage with lotion for input.  Tons and tons of every redirection for as long as we could.  The Internet finally started working again but the meltdown lingered.  Like any good snow storm, it left a good mess in its wake.   The day was already ruined before it even begun and calling for a "snow day" wasn't even an option.

The bus pulls up and I warn them that he's in a mood.  The driver just sighs and says "Wednesdays" cause even he knows that there will be a storm every Wednesday.  I promise to call the BCBA and teacher at school to see if they can give them some help on the bus and the driver agrees. It's a safety issue. It has to be addressed.  They pull away and I almost make it back to the front door before the tears start.

It would be so easy to just stay home and wallow but I got some shoveling to do.  There's really no choice here.   Mama Fry is gonna need an industrial snow plow at this rate.

My backyard a few years ago. Even my dogs were like "Oh Hell no. You better go make me a potty path." 

Tuesday, December 13, 2016

I'll be on my way

"Well here it is , my time has come
Won't be long I'll be moving on
I can't complain, I've had my day
Now I'll be on my way
And all the good times that we've had
Much more good than bad
What more can I say?
Now I'll be on my way"

"I'll Be On My Way" by The Sawdoctors

After a long battle with various auto immune disorders like Scleroderma and Sjogren's, my father passed away. It wasn't exactly expected. My Dad had sixteen separate hospital stays due to various complications from them.  A few of these stays were pretty touch and go but he always bounced back. In some ways I had made my peace with idea of his death years ago.  So it was a bit of a shock to have it happen after a pretty good day for him.

My last words to my father at the hospital were "I gotta go and call the school the district and give them Hell again." and he replied with a smile "Of course" because my Dad knew that is exactly what I was going to do. Next thing I knew I was calling a funeral home to make arrangements for him while trying make sure I can get the hours we need so Kiddo will be in school because no matter what, that routine has to stay the course.  Especially after the last three months we have had with switching schools.  If there is one priority here, it's Kiddo and I know my father is somewhere nodding his head in agreement.  What more can I say? I know my Kiddo's limits. Sitting through a funeral service isn't one of them.  He'll go to the "afters". Which is what we Irish folks like to do after the burial.   Oh and get this, when is this all going down?  On a Wednesday because of course it would.

"Don't be sad now when I'm gone
Take your time while you're still young
In the warm sunshine make hay
Now I'll be on my way"

Lots of people make a point of asking me how is my son handling this.  Does he understand? The truth is I'm not really sure.  My husband took the reigns on explaining what happened while I was busy dealing with what happened.  By the time I returned, Kiddo informed in a matter of fact fashion that "Papa was in People Heaven."  and further elaborated that People Heaven was right next door to Dog Heaven where our old dogs that has since passed on now live. Since it's happened he's been scripting all that a lot.  Sometimes it's nice to hear. Sometimes it stings. I suspect like most things my son does or says, I'll just get used to it. Kids are far from quiet.  It will just become part of the background as all these things do.  But to ask me how he is? Well I'm going to say kind of confused.  That's what I'm feeling too so it's good we're going with a theme.

Where I'm going , I don't know
But I'm heading off in sun
Rain hail or snow
In the yard I hear the children play
Now I'll be on my way" 

My Dad wasn't your typical kind of guy.  Didn't care for sports, didn't go fishing or was BBQ master.  None of the usual "Dad stuff".  Without a doubt, my Dad was a member of #TeamQuirky. He always just did his thing. Mainly which was an extreme fascination and love of aviation.  While many other father's played "Couch Quarterback" on Sundays during football season, my father climbed into gliders.  Which happened to be airplanes that don't have engines.  They are towed up by another plane by a cord which eventually gets dropped and then you just soar around the clouds.  Sounds a bit nuts, doesn't it?  But trust me, it was fun.  Many times as a kid he took me and or my brother with him.  Now that I'm a parent I think "You took your minor children in a plane with no engine!?!?!"  But I'm so glad that he did.

My father wasn't a "talker" but what he did say was always insightful, witty, and with a sprinkle of very dry humor.  Even if he didn't always get what I was doing, he still supported it.  He was happy to see his love of all things planes passed on to the Kiddo, who can clock any helicopter coming over the house before anyone else can hear it ala Radar O'Reilly from MASH.  I like to think that my Dad is in his own version of Heaven. A huge library filled with every book on World War Two that was ever printed and a nice Lazy Boy recliner to sit in to read them all with a stereo that plays nonstop Johnny Cash and Broadway show tunes. What more can I say? The man had eclectic taste. ;-)

I'm not sure what's next other than we'll get through it.  Autism has taught me that much.

"I have no fear of what's to come
My faith in better days is strong
Somewhere warm and safe to stay
Now I'll be on my way" 

My Dad and my Uncle J at my parent's wedding reception where they kidnapped rolling bar cart from the bartender.  Can we all just agree rolling bars are a thing that needs to come back into fashion.  Especially for IEP meetings and Parent/Teacher conferences. #TeamQuirky, this is what would make America great again.  Just sayin'. 

Tuesday, December 6, 2016

Trying to tackle WTF Wednesday

If you are new to this blog, you may not be aware of the phenomenon that is "WTF Wednesdays". In a nutshell, my Kiddo pretty much can't handle this day.  I've written about it before here WTF Wednesdays.  He hates it more than Garfield hates a Monday and we only think we know why. Allow me to explain.

The only one constant I can see is that at the end of the day he has his beloved music therapy appointment.  No matter how bad a day it has been, nothing makes that Kiddo happier than going to jam with Mr. "J".  All worries at left at the doorstep. He is truly in his happy place.  That Kiddo of mine sings his lungs out like a drunk after last call on a karaoke night. It's pretty delightful to listen to him express himself.

But the concept of time and waiting, this is not his strong suit.  To quote my boy, "Waiting is hard to wait."  I don't blame ya Kiddo.  Waiting is hard to wait.  I love this quote so much I might needlepoint it.  Pffft. Who am I kidding? I can't needlepoint. Maybe I'll meme it instead.

And because of this, his thinking is as followed. (Or so I imagine.) "I do not like having to wait till 4 PM for my music time.  Ergo, I will trying to rush through the day to get to the thing I want and woe to anyone that tries to slow me and time down. If I am miserable having to wait, I will make sure everyone joins me in that feeling."  Give or take.  It's subject to interpretation and my interpretation is if he ain't happy, ain't nobody gonna be happy.

This is coupled with autism, anxiety, and OCD with checking off all the things on the schedule, Holy crap, what a clusterfuck.  In a perfect world, he would go to school, high five teacher, yell "Peace Out Bitches!" and hop right back on the bus to take him home so I could drive him to music.  But that's not how these things work. I can pull a lot of accommodations out of my ass, bending the rules of time and space isn't one of them.  He has to learn to wait but he also has a long history of melting down on Wednesdays. It's just not worth it anymore. It's not fair to him, me, or anyone else's ear drums in a fifty feet radius of the Kiddo.

So what's a gal to do? Well right now we are going to try to disassociate the activity from the day.  That means changing the time he goes to a random series of appointment days.  Mr. "J" is being more than helpful and we're wiggling those things around so we can shake this pattern.

I'm also not telling him when these appointments will be scheduled. It's just gonna be BAM! Music time! Non scheduled events in an autism house.  Goes against everything ever said to us to do but hey, I'm out of ideas here. I deleted all events from his calendar app on iPad and added another passcode to my phone so he can't break into mine to see what events are coming up.

I'm not sure if it's going to work.  I mean, he has other weekly appointments that he doesn't obsess on as much.  I guess the level of fixation shows the high value it has in his mind.  I'm not sure.  Sorry Magic Speech Therapist who graduated from Hogwarts. Mr. "J" never made the Kiddo try to eat oatmeal like you did. I think that lost you a star on your review. ;-)

It's easy enough to switch an appointment but there are other things that just can't be switched that he's always going to obsess on.  Just last Friday was my husband's birthday. It was "SCHOOL! DADDY! CAKE!" all day till we got that cake. What am I suppose to do? Tell my husband or myself or a national holiday like Christmas "Sorry, it's canceled. Not this year. We'll let you know when you can come round." I guess there will just be certain days and times we can't move and we'll just have to deal with it.  Luckily for all of us it seems like he's in a much better place for school when his teacher gets that.

He seemed rather delighted and surprised when I sprung the appointment on him yesterday after school.  This is where it gets tricky though. Does he fully understand that was this week's appointment? That this wasn't an extra he was getting.  (As the kids say, my Kiddo is Extra AF!) Will he now think Monday is the now the new day?  Will he completely lose his shit come Wednesday anyway?  There's just no way to fully know until it happens.

Stay tuned to find out!

I made myself a social story.  

Tuesday, November 29, 2016

So far, so...

"How's he doing?" 

"So, what do you think of the new school?" 

"Is he liking it?'

"What do you think? Better? Same?" 

The above questions are what I keep hearing about the Kiddo lately.  Last week, Kiddo started at the "New School". (Sounds like an ad slogan. "New School. Brought to you by the makers of School Bus and Lunch Box. Educate your children with a new and improved formula!")

And God, this is when I know the Kiddo is just freaking adored because EVERYONE has been asking about him and how he is doing.  It's still early days and I know I am jinxing saying anything BUT I like to live dangerously. So I'm gonna.

So far, so good. I simply like what I see in the Kiddo.  It's a lot of subtle changes but they all add up to good stuff.  Like;

1) So much freaking LESS anxiety. Thank you Sweet Baby Jesus in footie pajamas but the morning before school are so much less stressful.  I'm no longer pretending to be the freaking "Hey! Hey! Everything Is Gonna Be OKAY!" cheerleader on a Red Bull bender. Trying to save face and pretend it's all fine and not react to his anxiety. Holy crapola. It's just so much better.

2) He's actually starting to talk about the people and kids at school. Loves showing off that he knows what rooms have what classes in them.

3) His appetite has improved greatly.  Not sure if it's a growth spurt or just a settled stomach but I cannot shovel the food into him fast enough.  As a fat woman who enjoys cooking and was always worried that he was too skinny, this pleases me.  You want more food??? You got it!

4) He's engaging more.  Looking to be silly and wants to do goofy jokes with me. (Kiddo and I have A LOT of inside jokes.) Eager to show me what's in his folder from school of the work he did that day.  (FYI, he's done more academic work in five days there than he did in three months at the other place.)

5) He hasn't mentioned his old school once.  Not a single staff member. Yep, that pretty much says it all to me.

Much like Nene, Kiddo has "blooped" and left the building. 

Now, he hasn't been an angel there at the new place either.  You see, "Old School" taught him quite a few bad habits and he rolled them out at the "New School" on the first "WTF Wednesday" that came around. (If you're new here, Kiddo HATES Wednesdays. We don't know why. He just does. Cause autism. What else can I say?) The new teacher however was like "NOPE."

Not Kiddo's teacher but I suspect nothing he did was anything she hadn't seen before. 

And here's the crazy thing that she and her staff did.  THEY HANDLED IT! I know!  I didn't get phone calls. I didn't get emails the length of "War and Peace".  I was told "This happened. We did this to correct it." Most importantly I wasn't told to come get him.  The Kiddo, in the middle of one these behaviors, actually started telling his teacher "Call mom. Go home with mom." because that's what happen every single freaking time at the old joint.  Imagine his surprise when she told him "No. I'm not calling her.  You're not going home."  She showed respect to his feelings but also showed him that she was there to support him and help him when he needed it the most.

This was also the week both my husband and I realized we both have "Phone Ringing PTSD".  We still jumped every time it rang. If I called him for anything at his job the first thing out of my mouth was "Hi Hon. He's fine. I'm actually calling about something else."  A week later and I'm still doing it. Today he told me to send him a warning text before I call. ;-) So yeah, we're both still kind of jumpy.

Today he came home with a perfect report and I nearly did back flips down the street. I would try to but I'm old and out of shape and very accident prone. So let's not say I did instead.

It showed me that with the right supports, the right environment and the right attitude can help him. It gave me hope.  I know the problem is far from solved.  Good old "WTF Wednesday" looms tomorrow but  I'll enjoy the fact that it was a good day.  We live in moments and right now that moment is good.

Monday, November 21, 2016

1 in 41.

All I kept hearing was how the school couldn't provide what he needed.  Let's call it what it is.  They WOULDN'T provide what he needed and this is the problem.  In case you haven't noticed dear school administrators throughout the state of New Jersey, the rates in our state for kids with autism ARE THE LARGEST in the country.  1 in 41 compared to the national average of 1 in 68. And that's just the kids!  I'm not including autistic adults in that equation.  

Oh wait. Someone ought to tell you. SPOILER ALERT! Autistic kids GROW UP!  I know. I know. This information shocks you but it just might explain why parents like myself are so freaking nuts about wanting to give our kids a good education. 

So maybe, just maybe, New Jersey and it's public schools should get their shit together when it comes to providing a free and appropriate education in the least restrictive environment.  You know, that right which is protected under THE LAW.  Seeing as our kids with autism are just as deserving and entitled as citizens of this country to an education like their neurotypical peers. 

But hey old school, remember when you seemed be be baffled about providing appropriate sensory tools for my Kiddo and his classmates.  Like you had nothing and were asking me what was needed in his classroom six weeks into his time being there.  He wasn't the first autistic kid that walk in that door. He won't be the last either.  Seeing as what the rates are in this state. 

Then we had the fun of fighting you to get that FBA done. Despite my husband, myself, and pretty much every single teacher and staff member from his old grammar school saying "This isn't the Kiddo. Something is wrong.", we still had to push to get that done. We suggested that a one to one aide would be helpful here as our son was struggling with crippling anxiety and grief over this new situation he was in and I heard again and again "Oh we don't think we can." 

But you finally got your wish. We left. Yay! Congratulations!! Let's tell the fine folks at home what you have won dear school district. 

You now get to foot the bill for my son's new placement till he's 21.  You get to pay for his one to one aide that is now in his IEP.  You get to pay for an on site BCBA that will be there every day. You bank roll both speech and occupational therapy for the lad.  But the best (and I would venture to say the Kiddo's personal favorite) is the door to door transportation via a bus company that you have to contract out. 

Hey, remember Old School how you made us buy fidgets and toys for him to use in the classroom.  Now I'm no fiscal expert but I am betting buying a couple of chewelry pieces is less expensive than shipping every kid out of your district that doesn't fit your mold.  That maybe dragging your feet to hire a paraprofessional who makes $12 and change an hour would be a better investment than sending every kid that has behavior challenges someplace else.

Oh and just so your clear, when I said my son needs a weighted blanket, your suggestion and offer of a weighted vest that's a size too small is NOT the same thing.  Again, while a weighted blanket is more expensive than your average blanket. It is less expensive than sending a student out of district.

I'm not so hot at math but wouldn't making the investment in some items and education for your staff be a better use of your money in the long term.  Seeing as all these special needs students get services up to the age of 21? Just a thought!

Is it a case that you are just hoping to make it to your retirement age without having to address this rapidly growing population?  Leave it for the next up and coming administrator that takes over your job to handle? Are you just on cruise control till pension time?

Is the total figure of what it cost just to educate ONE kid with autism just so large you don't even take it seriously? I mean, it's not your money or anything.  Oh wait, tax paying dollars and all. Yeah, it is.

Wouldn't you want your money invested wisely? Cause even if you are not in my town, you're in some town.  I've been talking to a lot of Jersey parents and this pushing them out of district move is happening a lot and with the autism rates rising it's only going to get more expensive. Hell, it's about to get a lot more expensive in my town as the families coming behind us want nothing to do with the town's middle school and beyond now. Hope you new Board of Education members are budgeting accordingly.

If you don't invest in these kids now, just wait till you see what the cost will be when they are adults.

Till then, "You get to pay for my Kiddo's school!! And you get to pay for my Kiddo's school and YOU ALL GET TO PAY FOR THE KIDDO'S SCHOOL!!!!" 

Monday, November 14, 2016


Many years ago I was on a date with a guy who noticed I had a bruise on my arm. It was from an autistic student that had pinched me while working with him.  My date became even more upset and confused when I shrugged it off as just a typical day at work.

Date:"That's terrible! He shouldn't be there!  He should be sent someplace else."

Me:"Dude, guess where I work?  Someplace."

Date:"But... oh."

We didn't date much longer after that.

"Someplace" has always been in the back of my head since we have started the long and strange trip with our Kiddo and autism.  I kind of always felt that as long as he was in our town's school district, things weren't so bad.  Having worked in a private school for special needs students, many of which had autism, I really was happy he wasn't in one.

But then shit happens. ;-)

Our school district is unable to provide a free and appropriate education in the least restrictive environment for him.  Now I am shopping for "Someplace" for my own son.  How the feck is this even happening?  And I get to do with him in tow because I will be damned if I am getting a phone call EVERY. SINGLE. DAY. like we had been about him while we are trying to tour schools.  Last week I had enough.  Kiddo had enough. I was tired of seeing my son be a completely different person. One filled with so much anxiety and fear.  Even at home some of the things he's been saying and scripting about his school day was making me think "WTF?" on a daily basis. Like some really shitty statements that were said to him or classmates and yes I believe him because HELLO! Autism. Scripting word for word is his superpower.  He's been bit by another student.  He's taken to eloping out of the classroom, a behavior he has NEVER done.  Banging furniture. Throwing things.  Grabbing staff and students. These are the behaviors of pure fear, not malice.  So I yanked him.  I guess we'll be setting up some home bound instruction till we figure it out.

I told the director of Special Services "We're done. Get his stuff.  Get his meds from the nurse and my son.", which she did. Then the case worker packed his stuff and brought it to the main office. Not a single staff from his room came down to say goodbye to him. That said it all to me. I took his hand and we left.

I have explained to the Kiddo that we are on an extended vacation.  He still doesn't fully understand that he isn't going back there.  Until I have a place to say that he is going to, I won't say a word.  It will just confuse him more and to not have an answer will make his anxiety even worse.  I'm sad he will be leaving kids he's known since he was three.  I hate we won't have his bus driver anymore who was an absolute joy. It is what it is though.  His heart will be broken but what other choice do we have other than to deal with it.

I feel bad too because I know I'm not the only unhappy family with that school and class right now.  I worry for those kids. I can only take care of our situation though.

So wish us luck as we tour some "Someplaces" for him.  I hope the process isn't long and I dread the trauma and confusion that's about to happen when we tell Kiddo about the new "Someplace" he's going to go.  I am very concerned about how this will play out.  I know not all private schools are like the one I used to work at but I can't help but be very worried all the same.

Somethings can't be solved by just ordering another side of fries but if any of these schools just so happen to have fries on their lunch menu, it wouldn't suck. ;-)

Wednesday, November 9, 2016

I am tired of fighting.

"I am glad to see he enjoyed trick or treating. He was excited to do it. 

We are also glad to see he and his classmates went to watch science experiments yesterday for exposure to the science curriculum. 

If a typical six grader is doing something, we want our son and his classmates to be given the same opportunity. Inclusion is as simple as that.  It is vital to presume competence in autistic and special needs students." 

Off goes my latest email to the school team.  Making sure I thank them for what they give us even though all I want to do is scream how it's his right to have it.  Plus adding a little at the end to remind them why I fight the way I do for my Kiddo.

Because believe it or not school staff, it's not my aim in life to be the crazy parent.  However with all the stuff going on in our lives lately, it's been very hard NOT to come off that way.

And because we have a Kiddo who just hit puberty like a freight train and still can't accept the transition of being at this new school, I feel like I'm playing monkey in the middle right now. Between trying to get what he needs at school set up and then how he is being. I'm not Willy Wonka so I won't sugarcoat this.  It's very hard to fight and push for your child and then still have your kid acting out.

Today I had my own meltdown crying over just that.  How am I to get them to give him a chance when he still keeps acting the way he does?  All I want to do is yell at him "Don't you know how hard I am fighting for you?" I'm at the point now where I wonder why do I do it?  Why can't I be the piece of shit parent that doesn't care and isn't involved? I would love to be that parent.  Who would like to be Mama Fry? The job title is for sale. I really don't want to be her anymore.

I knew motherhood was a thankless job but lately I am seriously ready to run off to Australia and never come back. And I could too. You should see my blog stats from Down Under. You know how Jerry Lewis is big in France. That's me with the Aussies.  I could couch surf for weeks and live like a king!  (Okay, so yeah. Maybe that Mama Fry thing does have it's perks.)

 I used to be able to accept the thankless part of it.  Really. If I saw him happy and thriving,that's all I needed. Now?  Not so much so. I'm fighting and pushing. It's still not working.  He still isn't getting what he needs. He's not happy.  Where do I go from here?

Well apparently it was to be called into the school again to go over his behavior and their complete inability to give him what he needs.  It's a real special moment when a school district tells you that they can't give him the free and appropriate education in the least restrictive environment as he is entitled by the law.

Before you say "SUE", which trust me, I pondered.  I sue to buy time to keep him in a place where they clearly do not want him nor can keep him safe?  There are other parents of his classmates that currently wondering if their kids are safe too.  There is just way too much uncertainly in that environment.

And since the second day of school when the principal turned to me and said "I sure hope you don't write about me in your blog.", I knew that Kiddo had a target on his head.  She did not want to deal with us.  So they are happy to send us on our way.  And frankly when she told me "Just lie and not tell him" about canceled appointments so he could have time to process things, that NEVER sat well with me that I was sending him to a school that had a staff member who could say things like that.

I'm heartbroken and scared.  I am starting all over again.  Now we scramble to find another placement for him and traumatize him again by taking him away from the classmates he has grown up with since he was three.

Licking our wounds.  Trying to figure out how we tell our son about this next direction we are all taking with him. Trying like heck to be okay so I can convince him it will be okay.

Current mood. 

Tuesday, November 1, 2016

Let it go or let it rise?

I tried to make my peace with why the Kiddo wasn't included on the general education trip. I rationalized in my head that this wasn't the hill I needed to die upon. I said to myself "Self, just blog it up. Get it out and then you can move on."  I did and many of you shared very similar stories of the same thing happening you and your child. While it felt good to know I wasn't alone, it was still eating away at me.  

My breaking point was receiving an email from one of the Kiddo's classmate's mom. Her son and mine have been together since they were three, so we go way back. She's also one of those rare breeds that isn't on social media, so she probably hasn't read my blog or in fact know I even have one. She's a cool, calm, and collected kind of gal.  This email from her though was the 180 of her.  She was PISSED about the fact our kids were left out.

The line that broke me was "Why am I selling all this fundraising stuff to pay for trips if he can't go on them?"  Exactly.  Why are we asked to do some things but not all things. Our money is good but my Kiddo's company is not?  

Oh and a lot of you have been asking me what was the trip.  Medieval Times restaurant.  Yes, there's a show that goes on in front of it of knights on horses and all that jazz, but at the end of the day it's a essentially a restaurant.  The 6th graders went to this as part of the social studies component because that's what the general education is currently studying.  Great!  I am sure that's a fun way to explore a topic but you think my Kiddo couldn't do that?  Especially since most of his class trips or "Community Based Instructions" as they like to call them are in fact to restaurants. 

While I'm sure his OT wouldn't be thrilled with the lack of utensils, I think even she would get on board with the theme. I mean, you do get a crown.

So no, I couldn't stay silent anymore and I sent an email. In fact, I sent a lot of emails.  To all the players.  From teacher to principal. Directors and supervisors and yeah, the Superintendent of our school district because this needed to be discussed.  I've included it here for you to see and also for you to use.  I heard from way too many of you how this has happen to your child too. It needs to stop. Feel free to copy, paste, and adapt it as you see fit.  (Please note, I have removed my son's name and name of his school for his safety and privacy.)

To whom it may concern, 

My name is "E"  and I am the mother of "Kiddo". He is a 6th grader at "I". He is also autistic and in the self contained classroom.  The transition from "A" school to "I" school has not been easy due to the nature of his disability.  The "I" team has been working with us to formulate a plan to help him succeed in this new placement.  

While I am glad to see several CBI (Community Based Instruction) outings scheduled for the class, I have some concerns regarding the areas of inclusion with my son and that of his classmates. 

I received a general email info "blast" from "I" school. regarding a class trip for 6th graders on Oct. 21. I waited to hear more information and receive a permission slip. Or even to hear from the team at "I"  how they wanted to handle a class trip with "Kiddo". (Would an aide from the class attend with him and his peers? Behavior strategies? etc.) "Kiddo" also saw it on the calendar as he can go on the school site and does to look up days off, school events and the lunch menu. He too, knew it was coming. 

I was very disappointed that we heard nothing about it and that our kids were excluded from attending. Past practice had "Kiddo" and his special needs classmates attend every class trip that their typical aged peers went on as exposure to the curriculum.  (For example, plant science was a trip to "B's" nursery.) 

I worry what kind of message it sends out to the neurotypical students when things like this happen. While I am happy to hear that "I" school does an event like "Volleyball for Autism" and the "buddy" program, the simple act of inclusion can teach about autism awareness and acceptance so much more. Several students and their parents that know us even questioned why "Kiddo" and his classmates weren't allowed to go.  That is a testament to how well the inclusion program was done at "A" school.

As this trip was to Medieval Times, which is essentially a restaurant with a show, how is it possible these students could not attend?  As several of their CBI trips have been to restaurants! It would have been a wonderful opportunity for the typical peers to model for these special needs students. Not to mention a way for our kids to carry over previous lessons they have learned on their own CBI trips.  

If this could be done at the elementary grade level every single year, there is no reason it couldn't happen at the middle school level.

In the future, I will be happy to act as a chaperone on school trips if they need parent volunteers.  

And I sent it. A couple of emails and phone calls later, I'm still not sure if they get it.  

I was told there would be a trip in the spring where both his class and the "buddy program" would be going to together.  Okay, that's cool.  I'm glad that's coming in the future. 

I was encouraged to look over the calendar and basically let them know what I want the Kiddo to go on and discuss it with them.  I'm kind of put off by that.  This is where I'm thinking "They don't get why I am upset." It's all "let's move forward" and not a real acknowledging of the problem.  Not a lot of "Yes, let's fix this." More like "Oh ok. You go do the work and let us know and then maybe, we'll see. Yadda, yadda, yadda." 

So,you want me to be the one on top of this?  You're going to see me be ON TOP OF THIS. You think my Kiddo can fixate on a subject?  Where do you think he learned it from? ;-) 

Friday, October 28, 2016

Things that still sting

To say that the start of middle school has been bumpy would be an understatement.  It's been a downright cluster fuck.  We keep chugging along because we are determined to get this to work. I will email, phone call, and or meet with anyone and everyone under the sun to get all the ducks in a row for my Kiddo.  It's not even an option.

But I would be lying if I said this stuff wasn't it taking it's toll on my own mental well being. When you are the parent and number one advocate for you kid, you don't get a choice to hide under the covers and give up.  I used to work with this population as well and I think back to those parents who it seemed to me just didn't give a shit about their kids.  Maybe it wasn't that they didn't give a shit. Maybe they had just decided they were done with all this never ending stuff.  They had just had enough.  I mean, how many times can a person be overwhelmed daily before they just say shut down?

Or maybe they just never started. I'm not sure but I'm too far in to walk away.

There are things I have gotten used to with my Kiddo.  Things I have become numb to and things I know longer get my knickers in a twist about.  I am focused on getting Kiddo comfortable with middle school. I can't care about the stupid little stuff because I cried over that long ago.  Then something comes up out of the blue that knocks the wind out of me.

This time it was the 6th grade class trip.  That he wasn't included in.  I saw it on the calendar.  I received the general email blasts that all the parents got about it but it never came up that he was joining all the other 6th graders on it.  No permission slip came home.  No word was mentioned.  Not even an explanation.  Nothing. Nada.

Prior to this school, Kiddo went on every class trip that all the other typical kids his age went on.  He and his classmates were included.  It wasn't even a case of "Oh gee, we're going to be swell and LET him go."  It was "This is the date and pack a lunch.".

And this is where stings.  His behavior has not been ideal. I know if I bring it up the trip, I'm going to get that thrown right back at us.  While the one to one aide has finally been hired, that person still has to be approved by the Board of Education and be fingerprinted.  So I can't even say "But he'll have his one to one!".

It hurts that we weren't even given the awkward phone call or email about it though.  Not even a "Hey, he's still adjusting.  Maybe next year?".  I could come to terms with that.  Right now, it's just another thing that just makes us feel left out.  He heard other kids talking about it in passing.  He knows it happened.

Did I mention this is also the school that does a big fundraiser "Volleyball for Autism" event every year? Which is great that they do because they raise a crap ton of money for local autism charities. I think that rocks but there is a part of me that thinks "How about some charity towards my Kiddo? How about including him? How about giving him a chance to prove that he can do it?  How about at least giving us the courtesy of explaining why he's not included?" I'm pretty sure when this event rolls around the school will be quick to send home information on it and how we can help promote and fund raise with them.

There's just something about that which makes me think "Don't call us. We'll call you, when we need you."

The thing is inclusion means the good and the bad and at least an explanation as to why something won't work and perhaps trying to find a way to make it work in the future.  Not just bits and pieces here and there.
This damn trip was like a line the sand.  I have to pretend it doesn't sting as bad as it does because I have to pick and chose my battles.  But all I can think is if the Kiddo noticed there was a trip he didn't go on, I bet the typical kids noticed it too.  At the same time, he's still in the weeds with this transition.  I guess we'll just have to let this one go.

Till next year. ;-)

#TeamQuirky will rise again.  After this round. 

Tuesday, October 18, 2016

Planning to be spontaneous

One thing that the new BCBA noticed about the Kiddo and his behaviors as of late was his fixation on the motivators he was working to earn.  He would get so worked up about getting to the reward that he could not focus at all at anything else. Which then usually led to MORE BEHAVIORS and no amount of reminding him "What are you working for?" could settle him back down. It was just like pouring gas on a fire. It only made his feelings that much more intense.

And because the Kiddo is a product of years of behavior therapy, if we don't specify a reward he will simply create one in his own mind.  Once that is decided, well, if you know autism you know that is etched in stone.

So what is a gal to do?  Plan some "Non Contingent Fun!!"  Doesn't that sound like a freaking hoot? We have to surprise him with random outings and activities off the cuff that have no ties to anything.  The idea being he will then let go of the fixation of the place and not build it up attached to it as only an earned reward that he could possibly lose.

Basically, we have to plan to be random. ;-)

It also means most conversations about any future events have to take place by my husband and I texting each other so the Kiddo doesn't hear about them before we spring them on him. Good thing we have unlimited texting on our phone plan!

We also need to work on Kiddo's need to hyper control everything.  Because even giving into him doesn't help and frankly, I don't want my Kiddo to become a raging douche.  I kind of feel once you decide to become a parent, you are promising the world you will not create an asshole.  You're going to raise a good person who is kind and flexible.  Of course, we got one with autism so that flexible thing gets a little tricky. It's not impossible though.

We're doing a lot of "Forced Choice".  Meaning, making him pick between two things but the secret is they aren't huge things. Just things that make him feel in control but it's not going to really alter anyone's world if he gets to decide between the green or blue straw. Like you have to wear pants but you get to pick which ones.  Hit him up with a non negotiable that sort of looks like there is some wiggle room.  We're learning to aim small.  Like Daddy Fry said this weekend "You want to go for run or a bike ride?" and then Kiddo immediately replied "Run AND Bike ride" and Daddy Fry got all his cardio in this weekend.  See what I mean? Next time it's "We're going for a run. Want to wear your red baseball hat or your #TeamQuirky one?" (And clearly the answer is the #TeamQuirky one.)   So the little stuff, we're letting him have the power as much as we can so he feels some control without controlling us.

The biggest change in what we are doing is giving extremely short notice when there will be a big change to the schedule and this one dude, I will not lie.  It is scary as feck! We had always been that family that gave him plenty o' warning with stuff because he needed the time to process it.  Since he started this new middle school, he simply cannot handle knowing a change is coming.  It's just an anxiety bomb ticking away.  It was suggested we tell him pretty much the moment before something has to switch.  So he doesn't have time to really stew on it.  It ties in with that whole "non contingent fun" I wrote about earlier.  So far, he's been doing okay with it.  I guess the element of surprise is working in our favor.  It's been a big adjustment though.

I think the biggest challenge though is school knows the plan and we know the plan but the general public, they don't. It's just another thing I have to be on alert for with the Kiddo.  Conversations I have to have before I go places to give folks the heads up.  Plus damage control when someone innocently mentions something because they didn't know it could cause upset.  Like the Kiddo's music therapist has been coming to our house for the last few weeks because he's moving offices.  Well his new office is finally ready and he mentions it at our last appointment that we can meet him next week at the brand new place and POOF!  I can just see the anxiety switch on with the Kiddo.

Did you ever watch Scooby Doo as a kid?  Kiddo's reaction upon hearing changes is very similar. 

And it's a completely normal thing to say to someone. "Next week we'll meet here." but there I was spinning the redirection wheel on the Kiddo.  "Don't worry about it Kiddo. New is Good. Hey, look over there. French Fries!" and I spun that kid out of the house to go score some "window fries" at the Drive thru so fast I think my car left tire marks on my street.

So here we are almost a week later.  The night before the latest schedule switch that he wasn't suppose to hear about but did and I can see some of the anxiety coming.  Daddy Fry and I, we just got to keep this Kiddo busy though.  It means slapping on the smiles even when we might not always feel that chipper but we have to because Kiddo smells fear.  It means planning out every move of our life like a military operation and I don't remember enlisting.  It means having to say goodbye to what used to work and trying something new because what other choice do we have?  It's always having to be "on" even when I am so desperate to find the button to turn it "off".

But that's what it is, so we try.  We tried before and stuff got better.  We can do it again.

Maybe Scooby Snacks would work? ;-)

Tuesday, October 11, 2016

Kiddo's Shot.

"I prob’ly shouldn’t brag, but dag, I amaze and astonish
The problem is I got a lot of brains but no polish
I gotta holler just to be heard
With every word, I drop knowledge
I’m a diamond in the rough, a shiny piece of coal
Tryin’ to reach my goal my power of speech, unimpeachable."

"My Shot" from HAMILTON

This is the Kiddo. This is where we are at the moment.  We know he's got so much in him but damn, getting it out of him is ROUGH right now.

We are in week number four of the new school and things are still bumpy but the good news is the FBA (Functional Behavioral Analysis) and the BIP (Behavior Intervention Plan) are done.  Time to meet up with the team and nine people came together for one Kiddo. You know there's a lot to go over when they have to pull in chairs from over rooms to cram all the people needed for this meeting around the table.

Reenactment of what I wore to the meeting. Okay, maybe not but I didn't wear yoga pants to it. Real pants, people. Real pants. 

That being said, the BCBA (Board Certified Behavior Analyst) had a lot of interesting insights about the Kiddo and his behaviors as of late.  Some of which were some light bulbs switching on moments of "Oh, that's why." and some were "Yes! I knew it!  That's what I have been saying!"

And it sure was nice to realize "Okay, this guy gets him."  I had to restrain myself from leaping across the table and kissing him full on the mouth.  My husband would have understood. He was glad to see this guy seems to get the Kiddo too.

The behaviors. Oy, these behaviors already.  I am so OVER them. I'm not gonna lie. We have been sad about them and we have also been "Oh FFS, Kiddo!!! Why????" about them too. I am trying my hardest to be patient which is ironic because that's one of the issues Kiddo has been having trouble with handling. Zero patience. Zilch. He sees a thing he wants, even if it's an event that's several hours or even days away from the moment and he just WANTS IT NOW.  This isn't just a spoiled kid tantrum about it.  This is an autistic person fixation on a subject.  There's not much one can do to correct this behavior other redirect, redirect, and did I mention redirect?

We are also seeing so many attention seeking behaviors.  For a Kiddo with autism, he has been CRAVING eye contact and constant social interaction like mad! So the best plan to tackle that is keeping him busy, giving him lots of praise for "catching him being good", and no reaction/planned ignoring all the behaviors. Most of these behaviors are seen during periods of less structure, so the suggestion was made to continue making him the classroom "beotch" and keep giving him work and jobs to do.  I've seen this at home too. If he's busy helping, he's happy.

Let's talk about that planned ignoring thing though, shall we? So much easier said, than done.  Especially when the other kids in his class can't stop from being kids and reacting to said behaviors. So even when the staff is all board with the plan, he can still get his negative attention fix from his classmates who are autistic and/or special needs and can't just be reminded "Hey, ignore Kiddo. It's in his BIP."   This becomes a challenging part of this behavior situation.

Funny side story, a bunch of us parents of these kids hung out at "Back to School" night having a good chin wag over things and taking turns apologizing to each other over what our kid might have done to their kid.  "Oh my god! My Kiddo grabbed your kid?  I am so freaking sorry."   "My kid bit another kid. It was yours? Oh damn. I'm so sorry."   No one was upset about it. I mean, hey, I don't want my Kiddo to be bit or to be grabbing anyone.  I get these are the behaviors though in a self contained classroom.  Comes with the territory.  As I told the mom of the boy that just so happened to bite my Kiddo, "I'm surprised it hadn't happened till now."  (And to that mom cause I know you read this, seriously.  I ain't mad at ya or your kid.  I know he's having a rough adjustment too.)

But I digress.

Needless to say we still have a lot of work to get done with the Kiddo. We are doing everything on our end and now the school is doing their part of the load which includes hiring a one to one aide to be assigned just to the Kiddo.  That's right, from now on it's going to be Kiddo plus one.  Now having had worked in a school, this is the part that I am both hopeful and nervous about.  This person will have a lot on their shoulders. I'm hoping like Hell they can not only do the job required but see past the behaviors to that "diamond in the rough".  I'm also eager for them to be hired as soon as humanly possible.  (Hey School Staff that reads this Hey! How's that hiring processing going? You got someone yet?  Get them to get that fingerprinting appointment ASAP.  You know those slots fill up fast. Oh, let that paraprofessional know that I give nice gifts at the holidays and the end of the year. Thanks!)

"It's time to take a shot
Rise up, rise up, it's time to take a shot
Rise up, it's time to take a shot
Rise up, take a shot, shot, shot"

Hopefully this is the shot that works or Daddy Fry and I are going to be "doing shots" of whiskey.  I am so not ready to give up on this working. I know it can. He can do it. We can do it. The school can do it.

Monday, September 26, 2016

Can't press "pause" on autism!

"Wait. You still took him to go see The Lion King on Broadway? But he's been so anxious and his behaviors!" 

You're damn right we did.  For a few reasons I'm about to list because for some reason, autism parents love to read lists! 

1) The performance was a special sensory friendly showing just for the autism/special needs community and their families/caregivers.  Nobody was gonna care if my Kiddo was loud or flappy.  The whole #StimSquad was out in full force representing #TeamQuirky.  

Show tunes and fries. This is living! 

2) Those tickets were expensive. I wasn't going to "eat them" because of what's being going on recently.  We could do it.  We have done it before. The prior experience was something we could use in our favor and did. 

That's 73.50 times 3. You know how much speech and OT that can buy? Exactly. 

3) I bought these tickets months ago.  Once an event is uttered out loud in this house, do you think we could cancel it?  Oh no, my friend. You are not familiar with the ways of my people if you think it's that easy.  We were committed! 

Kiddo has been studying this since it came with the tickets.  You think all the sudden I'm going to tell him "No Simba for you." Hahahahahahaha! NOPE. 

4) Most importantly. Life does not stop for autism.  Ever. Even when I could really use autism doing me a solid and being like "Oh, let's just give the old girl a break. She needs to catch her breath.", it ever does. God, I wish it would.  To quote another Disney character here, I'm like Dory. I have to just keep swimming while Kiddo keeps stimming. 

"But his behavior!  How do you teach him about consequences?" 

Agree with you there. I do have to teach him about his actions and how to be accountable for them. He does not get a free pass.  However, this is autism, intellectual disability, OCD, anxiety disorder, and ADHD we are dealing with at the house that fries built. This is not a child who doesn't understand the concept of time.  Things have to be very clear. Abstract thinking is not something he can do. We are not dealing with a run of the mill typical 12 year old.  I kind of wish it could be that easy. I'm not saying you parents of those neurotypical kids have it easier. I know the grass is always greener and stuff but I sure wouldn't mind a crack at it though. Just to mix it up. ;-) 

Now the Kiddo did have an activity he wanted to do after school on Friday, which he promptly lost as a result of his behavior at school that day. Was he happy about it? No, of course not and he whined and pleaded but this ain't my first rodeo with him and I stood my ground. He then asked "Work for it tomorrow?" while sniffling and I agreed.  I allowed him to be sad. I validated his feelings even though in my head I was like "Really Kiddo? You want me to feel bad for you about this? Really?" But at that moment sarcasm would be a HUGE mistake. (Before you go "Oh Autism kids don't get sarcasm.  Yeah, they can. Or at least, mine can.) 

And you know what happened with allowing him to cry, and be sad, and script like crazy?  I got some more information out of him. Valuable insight as to what is going on and it broke my heart.  He is seriously homesick for his old school.  Worse than I had previously thought.  His hyper focus is on that and well, if you live with autism in your house you know that focus does not shift easily.  

And because he is super sad about that, he's doing his usual "Let me list every meltdown, every little bad thing that has ever happened to me, every time I have ever been wronged or have done wrong." thing. Which is just depression wrapped in anxiety and marinated in sadness.  Oh man, that's a vicious cycle.  This is not going to get solved in a simple matter. Nothing with autism is ever that easy.

But by far the best reason to still go out and do big things like going to see that show on a weekend is it is one giant distraction for all of us. The weekends with no structure or plans in them can be way hard on a child with autism.  This gave us an all day activity and anytime he brought up "No school!", it was pretty easy to redirect him.  The day went by quickly, whereas staying at home the day would have been no less than ten thousand hours long.

Plus, because of his communication issues I am never truly sure of what he is absorbing. So we like to give him a chance to experience as much as he can. Maybe giving him a happy memory to think about when he's feeling sad at school that can help get him out of a funk.

You know, one of the reasons I started this blog is because a lot of my friends and family were commenting on my Facebook status updates about the Kiddo and his love of looking for excuse to NOT go to school back when he first started at the school he now misses.  If you know us, who can forget his requests of "Turn off school!" and "No Monday. Put away Monday."  Or his personal best of refusing to go to school because he was in fact a penguin and penguins do not go to school. (Hard to argue with that logic.)

And yet, I still made him go. And yet, he eventually got over his hatred of the new place and grew to love it.  So I know he has the potential to do the same here at this middle school if he just gives it a chance and if the school gives him one too.

Just like any good production, it's going to take some rehearsals, patience, and maybe some jazz hands here and there. ;-) 

Friday, September 23, 2016

The other side of this.

We had to white knuckle this last week. Some days were good and some were crap and some were "YEAH BABY!!!"  It was a fine example of life with autism in general.  Put out one small fire only to turn around and see two more that just lit up behind you.

My husband and I are in constant state of "Distract and Deflect" with the Kiddo.  We will do anything to keep him mind busy.  Which leaves us both completely wiped out by the end of the day and usually going to bed not far behind the Kiddo most nights.

Speaking of bed, Kiddo has taken to waking up extra uber early again.  I had long since made my peace that my child would never sleep past 6 AM but I found myself wistfully looking back to those days as sleeping in. 4:45 AM wake ups have become the norm.  He's also having a very hard time turning off his brain for the night.  Up for hours in his room.  I guess the only good thing is he does stay in his room but he's as about as quiet as having a bunch of frat boys riding elephants living next door to you.  If he's up, we're all up.

His doctor has tweaked his medications again and we've seen some success with it at school. To the point where the teacher wrote me an email that things seem to be a step in the right direction last week and we felt like "Yeah, we're getting somewhere.". Of course this was promptly followed by some days of not so great behavior due to his anxiety and we're back at square one again.

But we do have some good stuff going on.  Daddy Fry decided that the Kiddo needed a giant trampoline and Boy, was he right about that! (Look at that babe! I'm admitting you were right in print!)  Since we had to take down the old swing set that was falling apart, might as well set something else up over the dead grass. ;-)

 I suspect he'll still be jumping on it even in a snow storm. 

And while we managed to get through the week at school with no phone calls, I know we are far from being over this.  We still have a whole school year ahead of us. Every day of holding our breath till he comes home, that's gonna wear on a gal.  It did feel good to exhale when he came home today with a note that the whole school day was great.  The days though with the bad notes just feel like a gut punch.

WTF Wednesday returned with a vengeance though.  How do you go from two perfect days to all the old behaviors popping up AGAIN?? I'm hoping it was a one off. I'm hoping it was just his usual wanting to rush through the day to get to the thing he wanted. (Which is music therapy after school which he hasn't had in a long time due to scheduling problems) But I have really no idea and of course this was a day that the BCBA wasn't in the room to observe him for his FBA.  Ugh!

Thursday started strong but ended rough. So much anxiety over school.  So many attention seeking behaviors that we can't react to because that just feeds into it.  There's a point where I had to just keep biting my lips to keep myself calm from my own panic attack.

It's Friday morning and I just sent him off. He is buzzing with enough nervous energy to power a small city.  I hate that he is feeling like this over school.  Last night I had an emotional conversation with another autism mom who wisely observed how the Kiddo is probably still coming to terms with not being at his old grammar school.  How he is "homesick" in a way for it and he is still slowly processing these feelings of loss. She's right.  She usually is on these things.  Doesn't solve the problem but it certainly puts it in perspective for me.

Anxiety over your kid's anxiety.  How's that for irony?

I just want to get over this hump. I just want this stuff behind us. I want to get to that place where I can have these moments as distant memories where I can think "Well thank god we got past that."  I don't need anything else. I just want to get to the other side of this.  I know it can be so much better. 

Saturday, September 17, 2016

The List

I was sitting there on a Friday night looking at my last few blog posts and thinking "Geez, these last updates are kind of dark.  Kind of a bummer.  Sure hope I can get back on track with writing something funny again.  Something that might make another tired autism parent chuckle.  Spread a little joy into the #TeamQuirky world."

And with that the good Lord above looked down upon Mama Fry and said "Gurl, don't worry. I got you." and sent the following email exchange to the message box on the Autism with a side of fries Facebook page.

And it was good.

The name and phone number of this person has been blurred out to protect him from his own stupidity. 

Now this is a typical message that I get pretty much every other day. I wish I was making that up.  I wish I could say this type of sales pitch that preys upon parents who are grief stricken and confused is the rarity.  Sadly it is not and before you all jump on me for "Hey, you should give it a shot you don't know." I clicked on this guy's Facebook profile and saw he was a sales rep for company that is well known for it's high pressure sales tactics selling bullshit snake oil.   Hence my "Move it along, Buddy." reply. I don't want my time wasted and I'm gonna do this guy a solid by not wasting his.  Which is kind of nice of me because I'm sure he just copy and pasted this to a ton of pages.

Apparently being direct wasn't jiving with our fine friend.  He had a quota to fill, I mean, a point to make.

Heaping on guilt. Wow, you must make A LOT of sales. 

That's right folks!  I don't care about the cause or the children!!!  It's not like I have been tearing my hair out advocating for my own child this past week at school or....oh wait.... Well I certainly didn't work for nearly nine years with autistic and special needs children or anything...wait a minute...I did.  Oh I know, it's not like have been blogging for four years on this topic and created a global community so 70 thousand people can feel less alone or anything...Hold up.  Call me Britney cause Opps I did it again because I have!  Hey, I know. It's not like I have raised funds for Autism New Jersey by partnering with Spectrum Designs Foundation (A group that employs autistic teens and adults.) on a line of t shirts.  Well dang nabbit, looks like I did that too.   Hmmmm, it almost looks like I care.  Better make sure I'm really clear about the fact that I don't.

You hear that Temple Grandin?  I made THE LIST!  Are you on it? No? HA! 

I suspect the name of "the list" is "People who won't help me make money by exploiting their kids."  If so, I'm happy to be on it.

This is the point of the exchange where I realized that I have met this guy before or should I say, his type.  Several times over in fact.  Mostly my college and 20's when I was single.  He'd buy you a single four dollar warm beer and thought he OWNED you for the night.  God forbid you were direct and told him you were not interested, you were either accused of being a prude, a bitch, a slut or a combo of all three. I didn't put up with that crap then and you better bet your sweet ass I sure in HELL won't now especially when my child is involved in the equation. I bet this guy gets LOTS of dates and by that I mean, he is FOREVER ALONE.

I, of course, had to get the last word in.  If he was going to think I was a bitch, I best prove it. With a smiley emoji because I am thoughtful as feck.

"But Mama Fry!  He believes is his product! You shouldn't publicly shame him so!"

But you see I didn't because it would have been SOOOOOOO easy for me not to blur out his name or his phone number.  I don't know if you noticed but the folks that follow this blog, I both love and fear them.  They are like the mafia.  You send one of theirs to the hospital, they'll send you to the morgue.  I have a feeling that dude's voice mailbox would have filled up quickly and NOT with sales orders.

You see buddy, I got a list too and you and the snake oil you sell are on it.

Have a nice day! :-)

Sunday, September 11, 2016

Where do we go from here?

"Where do we go now?
Where do we go? 
Oh Sweet Child O' Mine." 
Guns N' Roses

Let me get the important stuff out of the way.  I want to thank you all for your comments and emails.  So many of you have been where we are now. Or you're still there in the midst of it too and yet you took the time to reach out and share your words of encouragement. Hearing "Me too." really does help.

But it also makes me sad.  On one post alone on this blog's Facebook page there were close to 700 comments.  My inbox for that page and my email account got slammed.  It became overwhelming to me.  I had to stop myself reading at one point because I found myself crying for all of us and Fries, I am in danger of dehydrating myself with the amount of snot bubble ugly crying I've been doing lately. Why is this stuff just so damn hard? For all of us.

This needs to be said.  School is not my enemy.  Because think about it.  Why on earth would I want to send my only child to an enemy? Right? That would be insane on my part and not in the good fun way. Both my husband and I want to fix this.

What I want is for things to get a chance to work.  By the end of the day on Friday, I did feel like we possibly had a plan in place but the only way we'll know if we are on the right track is try it out.  The most important step being getting him to school.  Cause let's face it.  You can have all the picture schedules, Behavior plans, and reinforcers in the world.  Doesn't mean squat if your kid isn't there.

So where do we go from here?  Well this weekend is all about the Kiddo.  We have done a lot of activities he likes and ones that also give him a lot of sensory input.  I'm going over the schedule with the Kiddo for the week.  We are planning things out for miles. Down to the songs we will listen to after he comes home from school each day.  Anything to give him comfort, keep him calm and most importantly, keep us calm.  Cause have you noticed that anxiety is a bit contagious?

Our school district has a brand new BCBA (Board Certified Behavior Analyst) and I think this guy being brand spanking new is going to work in our favor.  Fresh pair of eyes and ears on it all.  I've also been in touch with the Kiddo's old teacher and caseworker.  The caseworker is also going to come in and observe him.  Kiddo's medications have been changed again but of course, that takes at least six weeks before we see anything there.   We're even working on getting the BCBA to come over one morning before school so he can see the Kiddo and anxiety build up in action.  I'm more than willing to make sure I'm properly dressed in the morning and offer that guy a cup of a coffee and an Eggo waffle while he's here.  If it helps figure out what's going on, let's do it!

So that's where we are at?  I feel like we're getting tossed around in a mosh pit and I'm much too old for that stuff anymore.  I'm just sitting here hoping this sweet child o' mine gets on the bus each school day next week and starts letting the staff around him help him.  I swear Kiddo, we're all on your side.

He was happy the first day to go.  Let's hope we don't have another Axl Rose in 90's meltdown this week.  

Friday, September 9, 2016

Come Monday

"Come Monday It'll be all right,
Come Monday I'll be holding you tight.
I spent four lonely days in a brown L.A. haze
And I just want you back by my side."

Jimmy Buffet 

Stuff is not good at French Fry Inc.  School has been dicey and today we reached a brand new level of suckatude when the Kiddo's anxiety spiked so bad this morning that I had to make the call not to send him to school.  I have never seen him so upset.  He was able to verbalize that he felt sad but what I also saw in his eyes was pure fear.  I'm all about powering through stuff but there's a limit to what I will make my Kiddo and myself power through.

I won't lie. I am very frightened to what is going on at school.  I know this is a major transition and these things take time for an autistic kid to adjust. I have spent more time on the phone either emailing, texting, or calling folks about this.  My smartphone literally groans every time I go to pick it up.

We're making some medication changes but even those take time to kick in. Same thing with getting an FBA done.  Even once the recommendations are made, that the steps will take some time before we start seeing their effects on the Kiddo and his behavior.

Kiddo is now very calm.  No, relieved is a better word that he is home.  He has asked to go to school on Monday and seems ready to go that day. I really hope so.  I keep asking for folks to give my Kiddo a chance but that's hard to do if he's not there.  So I am really hoping that come Monday he will be willing to go.

I feel like we are starting over with autism. I feel like we are back at square one when the word "autism" was first brought up.  And I hate it. I have cried so many tears and lost so much sleep in the past few weeks that the bags under my eyes are now bigger than my boobs and that's saying something. Cause I got a rack.

I feel like I lost him and I am desperate to get him back.  Just hang on Kiddo.  I just want you there by my side come Monday.

Hey Kiddo, if you're gonna get into watching blenders on YouTube, could you look up a good recipe for a Margarita for me?  Take me to Margaritaville? 

Saturday, September 3, 2016

Moving Forward

Toward the end of ESY (Extended School Year) aka "Summer School", we had a bit of a major setback with the Kiddo, his anxiety, and school. It was a real shock to our system because for five weeks stuff at school was great. We got some nice emails from the teacher about how he was handling the new school and adjusting to life at the middle school. Then our old enemy "Anxiety" showed up the last week and it all hit the muthaloving fan. Who the Hell invited that guy? Seriously, Anxiety, you can't sit with us.

I don't even care if you are wearing pink on a Wednesday.  

How it was handled there wasn't ideal. In fact, it sort of sucked. It was a recipe for a clusterfuck though. New people that did not know him and his previous work. Stuff that he used at his old school to help self regulate and calm was not available at this one. I think six weeks of not having his comfort items and all the newness took it's toll and the Kiddo went HAM with the attention seeking behaviors. The more I reflect on it, the more I know these behaviors were his only way to draw attention to himself for being so miserable and unhappy and unsure of everything. This is where the communication disorder in autism is a bit of a bitch.  Why say "Mom, I'm really upset at school." when throwing blocks across the classroom is in your wheelhouse?

So we have had since a flurry of emails, phone calls, and meetings since the big blow up. We're trying to get all the steps in place for him for when school starts up again. I'm not gonna lie. I am freaking out about it and wish I could go back in time and send him to his old elementary school where he was King of the joint. Everyone knew him and more importantly knew his triggers and how to redirect him.

Yesterday they had a "Welcome 6th graders" pizza party at the school.  It was for all the incoming students to come and get a tour of the place, mingle, and in general get a little more used to the place they are about to attend for the next couple of years.  No parents allowed.  I really wanted him to go.  I wanted the Kiddo to see his pals from his old school from the typical classes.  Even though he had been in the building all summer, it was going to be a whole lot different with way more students and staff in it.  I thought it was a good way to get an idea of what that would be like for him. This middle school would also have a lot more students that he hasn't met yet coming from other elementary schools.  I wanted them to get to know the Kiddo. See what a swell guy he is.

I was very, very, very wrong with this idea.

Even though he was scripting like a mofo, I still took him.  I still dropped him off to the caseworker that was going to shadow him.  I told her I would hang in the parking lot and it was a good thing I did.  Forty minutes my cell rang and I could hear the Kiddo hollering like a banshee as a staff member said "Yeah, we tried. Come get him."  And so I did, with my sunglasses on because I did not want them or him to see the tears in my eyes.

I don't know if it was too much for him or the fact that he knew it wasn't a real school day or the alignments of the planets or because I didn't perform a animal sacrifice.  Perhaps it was just because of autism, which is most likely the best explanation.

And like any good meltdown, he had to peseverate on it for hours.

And like any good autism parent, I kept reminding him that the activity was done. The event was over. "Moving forward!" On to the next thing.

But in my head, I am still obsessing over it. I am trying to figure out what went wrong and how to avoid it in the future. I am convincing myself that this school year is going to be awful.  That all the hard work that was put into the Kiddo all his years in elementary school are gone.  My stomach is in knots at the idea that the school will be calling me every day with another complaint about his behaviors.  They think the logical thing to do is to call me like I have some sort of magic secret solution to all this that I am keeping from them.  Trust me school, I'm not. This is where we both need to agree that we both don't always know what to do.  This is where you at the school just have to power through some of his shittier behaviors because at the end of the day, that's all we do here in this house when he has them when nothing else works.  Welcome to our world. It sucks sometimes.

I'm trying to remember to move forward.  I'm trying not to dwell in the much here.  I'm struggling here. Some problems can't be solved by ordering another side of fries. Some problems are only tackled by powering through and moving forward.  Like a bulldozer.

Middle school, be patient with my Kiddo.  There is a reason so many people love him.  He's freaking awesome.  Just move forward with him.