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." 

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'. 

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.  

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.

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!!!!" 

Someplace

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. ;-)

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.