Is it a scam?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

because Autism.

"Why is he upset every Wednesday?"

I know exactly why the Kiddo hates Wednesdays and there's not a God damn thing I can do about it. Why you may ask?

because Autism.

His behaviors every Wednesday to get to the thing he wants (Music therapy after school) are now creeping into Tuesday. I could almost deal with the weekly "Wtf Wednesdays" if I knew I only had to power through a day of it.  Last night however, he decided to ramp it up about being pissed off at having to go to school the next day.  Why you may ask?

because Autism.

"Well can't you just change the day he goes and not tell him when it's coming?"

Tried it. Didn't really work and it's not that simple.  Not to mention have you ever tried to move a therapy appointment?  Do you know the ripple effect that has over your schedule and the therapists schedule?  What am I suppose to do?  Demand other folks move their appointments around because of my Kiddo?  I don't think I could withstand the #TeamQuirky backlash/karma that would then surely come my way.  Plus, he knows he has this as a therapy.  It's insulting to his intelligence to hide it from him. Also, I don't like lying to him. Which is what that feels like to me.  I won't screw around with that trust.

"Have you tried..." 

Stop.  This is where I need you to not talk.  There is no answer to this. Why you may ask?

because Autism.

This and a thousand other challenges we have on any given day is the only explanation. Autism.  May not be the answer that actually answers the question but it's usually the only reason why something is happening that doesn't make a whole lot of sense to the rest of the neurotypical world.

It's because of autism I ended my Tuesday night being screamed and grabbed at for hours before he passed out to go to sleep. It's because of autism that our day started at 3:58 AM with more screaming. It's because of autism that I spent the next several hours defending and deflecting every grab he tried to do to me before the bus rolled up.  It's because of autism that I found myself in tears before the bus driver trying to tell him it was a bad morning and the man then made me cry more by sweetly telling me "My heart goes out to you."

The only part of this that isn't ALL autism is Kiddo not only thinking but telling me that he will act up as much as possible so I will come get him at school.

because THANKS OLD SCHOOL FOR SETTING UP THAT BEHAVIOR!!!  Yep, thanks to your pure incompetence on how behavior therapy actually works and sending him home all those times. Guess what you taught him to do? Act up = go home.  Thanks a fucking lot.  We have not crossed the threshold of that school since November and your actions are STILL screwing over my Kiddo.  Oh? You're surprised he won't let that go? Seeing as it was weeks ago since he's been there?

because Autism.

Because there is nothing this Kiddo loves to do more than when he's feeling sad, he makes sure to remember every sad time he's had.  Every wrong ever done to him.  Every time he's had a disappointment.  A real walk down meltdown memory lane.  We have to hear about stuff from years ago and help him get through it.

because Autism.

I wonder if I can palm a fifty to the bus driver and he'll pick him up Tuesday night for Wednesday school. Little camp out on the bus? Maybe? I kid. I kid.  (maybe) 

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!!!!"