Sunday Funday

 I think it's safe to say we all came up with new coping skills in order to maintain our sanity during lockdown.  Kiddo is no exception.  As the world has started to reopen, I have seen there are a lot of skills that he previous had that have gotten rusty.  Like eating out.  Oy vey, he went from a kid that would gladly eat out for every meal of the day to one that is like "We can't get this to go so I can eat fries in my pajama bottoms like the good Lord intended?"  We're working on it though because my husband and myself very much like NOT COOKING and we are slowly seeing progress with that again.  

But man we have hit a wall hard with Sundays.  All the sudden we have seen Kiddo become extremely fixated on Sundays. I have always joked that you better have a plan for the weekends or he'll make one for you and it will most certainly be expensive.  While that still stands for Saturday, Sunday has become a routine around the house that is NOT to be messed with.  

And as routines go, it's not really disruptive or outrageous.  It centers around that the mail isn't delivered on Sundays.  Which as you can imagine is a bit of an odd thing to fixate on when you are a kid that doesn't pay bills.  So why the focus on it?  Well, maybe it's the fact that it comes all the other days of the week. Even during the peek of COVID, he could count on the truck rolling down the street.  We also made it one of his jobs to go out and get it, which again, lockdown. Other than walking the dogs, it was one of his few outings he could count on.  

In turn he started to hyper fixate on what WOULD happen instead.  What he could control because despite his campaigning, I was not able to get a part of the Federal Government to make the mail come on a Sunday.  (I know, I know. It's like I didn't try.) 

So it became about certain CD's that he would listen to at certain times throughout the day. (Yes, CD's. Yes, we have an Alexa and all the streaming stuff you could want. He still loves CD's. #BecauseAutism)  Followed by certain movies he "script watches".  What's that you say?  Okay, have you ever been to a Rocky Horror Picture Show at midnight?  It's kind of like that but with less garter belts and slices of toast flying through the air. (If you have never been to a midnight showing of Rocky, I urge you to correct that situation.) He will utter every line in the flick and reenact every scene right in front of the TV. It's actually quite impressive and highly entertaining.  Then there are certain books to read, games to play, etc...

In a lot of ways, this is good. He keeps himself busy. It clearly soothes him. It's a day off from school and therapies.  He should spend it doing the things that he likes.  

But in other ways, it's hard because he now refuses to leave the house on a Sunday and like it or not, sometimes we have stuff to do. Plus, I cannot leave him home alone to do these things like a parent could of a typical seventeen year old.  We try our best to accommodate and it's clear he very much NEEDS this routine right now.  Like all things with autism, I have learned to just go with it.  It will pass but it's sometimes very hard to watch your child struggle.  

Just this morning my husband offered a trip to the beach for Kiddo and the look of sheer panic that went across of his face broke my heart.  We tried to show him where he could fit it into the schedule but we realized quickly it was not going to be pretty if we attempted to this outing. On any other day he would be the first one running to put on his swimsuit and grabbing a towel to go.  My husband and I were then stuck in the grey area of knowing he doesn't want to change the schedule but he also loves that outing. I could see Kiddo start to sweat.  I knew immediately this would result in a meltdown.  He just didn't know how to communicate to us "I want to go but not today."  

And this is where it gets tricky because I don't want him to think we are taking away this thing that he loves because he just doesn't want to do at the moment.  Thhen he will fixate and meltdown over it.  I have to show him it's okay to say "No thanks!" I talked him through it.  He quickly latched on to "Beach is finished!" despite not having gone to it at all.  Whatever, it somehow calmed him and kept him from melting down. Although I suspect the use of his emergency anti anxiety medication that I wound having to give him helped too. 

He is currently hiding in his room as I type this.  Very much avoiding us. I am sad that just offering something that should be fun stresses him out so badly.  I am worried that for many Sundays to come he will bring up "Beachgate". (How dare we?). I feel bad that my husband just wanted to do a fun thing for Kiddo that in the past he would be very happy to do. The fact that someday he may just decide "I'm not doing this routine anymore" just kind of kills me because that's usually how stuff like this goes. He just decides he's done with it and we'll have to learn as we go whatever it is next he does to self soothe.  

I know this is the aftermath of COVID lockdown. Never did I ever imagine that I would have to give my son his anti anxiety meds because of a beach trip suggestion but here I am on a Sunday morning listening to him sing "Thomas' Winter Wonderland" at the top of his lungs because apparently it's the time of the day we do that now.  

Flashback to a day at a beach. Clearly not a Sunday where one must sing the entire Glee catalog. 

Sometimes It Snows In April

Sometimes it snows in April
Sometimes I feel so bad, so bad
Sometimes I wish that life was never ending
But all good things, they say, never last

All good things, they say, never last
And love, it isn't love until it's past
Prince

It's funny how it sneaks up on me. For the most part I just cruise along, following Kiddo's lead on where we need to be.  If he's happy, then I'm happy.  I felt that I have made my peace with what life handed us years ago until something comes along that rocks the boat.  

The latest culprit?  Prom season.  Kiddo is seventeen.  While he has expressed an interest in girls, (Two of which he was juggling at the same time!) , he's never done the traditional dating thing.  At all.  The relationships pretty consisted of occasional hand holding and sitting next to each other at school.  To be honest, that's pretty much all I could handle him doing, so that in a way worked out.  

But I recently started seeing my social media feed flood with prom pictures and it was the first one that really got to me. It was a young woman that had been in the same infant playgroup with him as a baby. Then a few graduation pictures.  Then a few videos of seniors finding out what colleges that they had been accepted to as they opened their emails.  Finally, it was teens proudly holding their newly acquired driver's licenses and posing behind the wheel of a car.  It was shot after shot of his neurotypical peers doing neurotypical stuff. 

And I "liking" and adding the appropriate remarks of "Congratulations!" and "Wow!  They look fantastic." because I truly do enjoy seeing these moments shared.  (Seriously, if you have ever thought "Oh I shouldn't put up all these pictures on my vacation.", ignore that feeling and upload 75 pictures of your trip to Cancun.  I'm the kind of person that will look at every single one of them.) 

I didn't even want to post about this. I didn't want to look like a whiner. Nor did I want to be accused of not accepting my son's autism because with online autism stuff, it can go south fast really quickly.  I was in no mood to be told I was an abliest piece of shit and all that jazz.  I swallowed it. I keep it quiet. I didn't want, God forbid, any of those parents to pity us or worse, feel sorry for us.  I just needed to be in my feels, as the kids say. (Or will no longer say as I, a 47 year old woman, just used it.) 

I am not even sure why it hit me so hard this year. Like I knew it was coming.  I'm not in denial about his growing up. I'm chalking it up to COVID and the year that was robbed from us.  I guess I would have been in a slightly more secure place had we a year of job training behind us that I could lean on.  I could comfort myself with that.  Seeing as we are not only missing all that time but are now relearning things, it just hit me hard.  

Because sometimes it snows in April and I have to just bundle up and deal with it.  You can be fine with it all for years. You can be an advocate, writer, public speaker and general loud mouth for all things autism and it can still knock you on your arse when you least expect it.  It doesn't make me a bad person. It makes me human. Feelings are fluid.  They can ebb and flow around your heart and in your mind.  

Sometimes the best way to melt the snow is with a laugh.  Me, 1992. I decided to go to prom as a disco ball.  

What am I suppose to do now?

This question has been in my head since the day I first heard "autism" being used in regards to my Kiddo.  It never goes away and it's never been answered.

Sometimes we have really nice moments.  Long stretches of just good times.  Usually when we have a good solid chunk of a routine being followed.  He's content.  I feel slightly confident.  Clearly, we're on the right path.

Then the question reappears.

What am I suppose to do now?

For every phase we've left behind us, for every struggle and challenge we have had to rise to, another one quickly slides into it's place.  I'm forever waiting for that other shoes to drop and it will because Kiddo hates wearing shoes.

He's 17. The window towards aging out of school is closing in on us.  The worst part of that scenario is that Kiddo is completely and innocently oblivious to it.  In his mind, he probably thinks he will go to school FOREVER because that's all he knows.

 I'm a former job coach and Pre Voc instructor. In my mind, I have always thought "HE. WILL. HAVE. A. JOB."  Even if I have to start something myself, my boy will be earning a paycheck. Now that we are closer to that part of his life, the reality is I'm probably going to have to do just that.  Unless something happens overnight and thousands of resources and supports are put in place for disabled adults.  Seeing as we, the autism community, can't even all agree about whether we should say "autistic" or "person with autism" without a fight, I don't have much hope that these much needed changes will happen.

And that's when I think again "What am I suppose to do now?" the most.  Because just once I really want to be a little selfish, a little lazy, a little chill and laid back and NOT have to worry about creating something out of nothing.  I want someone else to do it. So very badly. I don't want to be a leader or an advocate. Sometimes, I even want the problems that we won't have. That we will never have. Just so I can have the novelty of them.  Please, I would relish fighting with my Kiddo over wanting his own car or staying out past a curfew.

Even writing this blog lately, I find myself thinking "What am I suppose to do now? What am I suppose to be writing about?"  I've been doing this for almost nine years and one trend I have noticed is by the time you have read this blog post, ten new autism blogs will have been born.  They will be fresh off the boat into Autism land with their kid only diagnosed a short while ago. I will look at them in awe wondering how the Hell they are doing that. I was barely treading water when we first dived into all of this.  I have a hard time finding other blogs dealing with teenagers on the spectrum.  As a friend pointed out to me "Well, it looks like it's gonna be you doing it."

Now we are also back on an anxiety spike. Gee, thanks COVID. We are really seeing the long term effects of what being out of school did. While we were lucky that he was able to return to in person, the program is now vastly different due to COVID restrictions and for lack of better words, it sucks.  Gone are the trips out shopping to foster independence and job training. Just in school, all day, It's just not the same at all. You can practice those skills all you want in a class but a job site cannot be replicated in a classroom.   Kiddo, according the his teacher, is doing great at school. Like clockwork though, he lets it all out when he comes home. While anxiety in the past has been destructive and aggressive, it still is very much present lately.  He is scripting galore and wants us to join him in the misery. Yes, we are harassed into repeating the scripts with him. Sometimes I rattle off the same twenty or so lines and it's enough to snap him out of it. It makes him feel content enough that I have heard him. Sometimes though, I am just so tired of doing it.  His anxiety gives me anxiety.  Add in the fact for the last few nights, he's just not sleeping. Therefor, we are not sleeping. It's hard to stay sharp and focused on what he needs when all I want to do is crawl under a blanket and sleep for a hundred years.

What am I suppose to do now that we have this much anxiety again? I know we have had a lot of changes lately with school. How long will it take till this new normal becomes our normal?  I remind myself of the three month rule. (Which you can read about here.)  There will be a moment down the road where we will slid back into a comfortable groove. I hope.  

But what am I suppose to do now till that happens?  Figuring that out is hardest.

Kiddo's answer?  Order more fries. Okay, he might be on to something,

Hello Fries!

 *taps mic* 

"I'M BACK!" 

Well actually, I never really went away. I just stopped using this blogspot for my content.  Ironically, just around the time I was starting to suffer from a serious case of writer's block and social media burnout in general, COVID walks in like the BAMFer that it is.  In an effort to survive, I just made the choice to just keep our updates on life on my social media accounts.  

Here are the places you can find us! 

Facebook Autism with a side of fries and now with that blue check mark. We so fancy now! 

Instagram Autism with a side of fries

Twitter Autism with a side of fries 

I'm still cranking out the content but I have to say lately I have been itching to going back to writing more long form stuff.  

And now that life is sort of returning to a new normal, I actually have the time and more importantly, the desire to do so.  I'll spare you the what I learned about myself during the time of COVID.  I think I learned what many parents did. I am absolutely not made to homeschool my kid. Period.  Oh mother of mercy, I am NOT! 

So what's the status quo at the moment? Well, Kiddo just turned 17 and we now have roughly 350 something days till he becomes a legal adult. Which Jesus H, didn't I just have this kid? Like I still have numb spots on my c section scar. How the hell did that happen? 

And frankly I am frighten because we are that much closer to the big dramatic jump off the school cliff into the moat of adult services which in case you did not know is bone dry.  A lot of last year when we were home with nothing to do, I just sat there and stewed on that. I was getting a giant preview of what life was going to be like with him post 21 and let me tell you something, it wasn't good.  At all.  

Combine that with his entire world being tossed upside down and out the window I was beyond a hot mess. Like I was no longer the cute internet hot mess you have all known. This was beyond using too much dry shampoo and chugging coffee like my life depended on it like most stereotypical mom memes.  I was just trying to get through the day while watching every single skills we worked for slip away from my son. My heart broke multiple times a week. It was rotten and frankly not very inspiring to the Ye Old creative process of blogging. 

But I have always said that you can have a pity party, you just can't stay at it.  So the last few months I have been slowly pulling myself out of the muck.  

One thing I did was put myself out there when I saw a project that will help not only my own's son's future but others just like him.  Mama Fry got herself a Trustee job! I KNOW! Lord help the Monmouth Ocean Foundation For Children for saying "Yeah, she''ll do." after I interviewed.  Fun fact, it was done over zoom and it wasn't until after the interview was done that I realized I still had my mascara tube in my bra. (Make up tip.  Warm up your mascara in your bra.  It really does work!) 

Despite that, they still took me on and let me tell ya the cool AF project we are working on now.  A 21+ adult program!!  Yep, yours truly is working on getting this thing built because I am selfishly motivated by having a kid who will soon be an adult.  Nothing kicks your ass into gear like fear. Ain't that a effing hoot?!! This isn't some boring babysitting warehouse of people sitting around.  This will be a continuing education and vocational training experience! It's gonna be SWEET!

Okay, so this is me signing off because Kiddo just rolled on up from school and I have to roll on out with him off to music therapy and then "window fries" because some stuff does not change. I may be able to take long writing breaks but mom breaks? HA!  As if!  

This felt good to do.  Okay, my challenge to you. Go do something you haven't done in a long ass time.  Legally, of course. 

Or not. I don't judge. ;-) 

Chase's Friend Zone

Dining out.  This is not an easy task when autism is a member of your party.  It can be challenging and sometimes downright impossible.  Eating out is WORK for our kids. It just is.  I've written countless lists and tips for those of you have a little ones on how to make it sort of work. I've had successful outings and downright "Holy Hell. Pack this up. Throw money on the table and the get the heck out of here" ones.

What if I told you that there is one restaurant where you never have to worry about how much noise your kid might make?  What if I told you there was a place you could go where not one patron would bat an eye at your kid getting up and wandering around flapping if they needed a sensory break?  What if I told you there was a place where you and your spouse could almost feel like you were on a date again while your kid was playing with the toys WITH adult supervision?

Sounds almost too good to be true, right?  Enter Chase's Friends Zone

Chase's Friends Zone is a sensory friendly dining area that's part of the Riv's Hub restaurant in Toms River, New Jersey. The owner's grandson was diagnosed with autism and let me tell you something, this set up is ACES!  This couldn't have been a greater experience.  It's a private dining room with it's own special entrance.  There is no loud music playing or seven different TV blaring with various shows or sporting games. It's so quiet!  Check this out. 

The hostess told us to sit where ever we wanted. Kiddo picked a spot closest to this play area. 

He hit the trains and completely ignored my husband and I. 

A lovely waitress hooked Mama Fry and Daddy Fry up while another staff member actively engaged with Kiddo and another child that was also there. Within minutes she had both Kiddo and the other child there playing TOGETHER with blocks. We didn't even have to get up and helicopter over him. It was almost like we were on a date! 

Forgot the headphones? No problem! They have a bunch they'll let you borrow! 

Every table had a basket of fidget toys and bubbles. Imagine going to a place where you didn't have to bust out the big mom purse with all the stuff.  They have you covered!  

Kiddo gives two thumbs up for their flat bread pizza and side of fries.  The amount of fries they brought out was almost comical.  He was delighted! The waitress was so engaging with him and with us.  Daddy Fry and I got a couple of burgers which were both really good and I'm not just saying that because I didn't have to cook them. They were great! 

They give each family a piece to sign for their wall.  If you go, look for us on the wall! 

And because this was a new place to us and not our typical Friday routine, autism and anxiety did come with us as well towards the end but let me tell ya, they had our backs there too.  Kiddo was getting a little anxious, and a bit loud but you know what?  No one cared!  The other family was also have a bit of a hard time transitioning to go home but you know what? We didn't care.  Like whatever. It happens.  The staff quickly got us our check.  Kept an upbeat, no big deal attitude which helped keep Kiddo calm and we were on our way with our leftovers.  It was probably the most relaxed I have ever felt while dining out with him and I'm not just saying that because that peach sangria I had was killer.  We talked with each other, with the other family, with the staff. It was just such a nice experience. 

I know this is one of those first of it's kind type places and if you are reading this and thinking "Well, that's great for her but there is nothing like this here.", I hear you. Please know that for many, many years there was nothing like this here either.  This is a start though.  Share this post.  Talk up this story to others. You never know why might read it who can try and bring a similar thing to a place by you.  We will absolutely be back.  If you are in the area, you can book a table on their website or give them a call.  We went at an "off peak" time but there were plenty of tables. 

A big side of fries salute to Chase's Friends Zone at Riv's Hub!

"Mix it up!"

We have been working with a behavioral therapist to address some of the challenges we have with Kiddo's behavior.  Now "Because Autism" is at play here, accepting change has not always been met with rave reviews with the boy.  However, "Because Life", we needed a way to figure out how to make it a bit more tolerable for all involved.  Add to fact that Kiddo is now fifteen and several inches taller than me, there's no "making him" do anything he doesn't want to do.

Kiddo loves "performing" for therapists.  It's very rare where they will actually see the behaviors we talk about with them.  Especially with the guy currently seeing Kiddo. Kiddo freaking LOVES this dude.  We are very lucky to have him. I consider it my good karma for whenever I've let someone go ahead of me when merging on a highway and I give them the "Go ahead" wave.  I mean, that had to pay off eventually.

And for whatever reason, the one thing this guy has taught Kiddo that has caught on so well with him is a simple three word phrase, "Mix it up!".

Honestly, that's its. It's literally been that simple. I don't know if it was time, maturity, this guy's aura, the alignment of the planets, etc. All I know is, all we have to do is say "Mix it up" when we have to announce a change and Kiddo just repeats it and accepts the change.  I KNOW!!  He constantly tells him to "Mix it up".  He won't let him do anything the same way twice during their sessions and I think that has helped driven the point home.  It's just that all the sudden, Kiddo is getting that change happens.

Like we went through a massive power failure.  A Hell of a storm ripped through here a while back and knocked out the power.  For most people, this inconvenience wouldn't be much more than an annoyance that their AC wasn't working on a hot night.  (Which OMG, Mama Fry is way too perimenopausal to be dealing with that bullshit.) For us, I had a legit panic attack when I realized that Kiddo would not be able to have his nightly viewing of "The Polar Express".  I couldn't even hook him up with the portable DVD player because the DVD was stuck in the machine.  No WiFi, so no streaming.  Nothing. It was a Tom Hanks free zone.

But then it wasn't.  Right around the time we would usually be settling down in front the TV, Kiddo decided to "Mix it up". He started scripting the entire movie line for line from the start to the very end.  Including dancing around during the "Hot Chocolate" song and falling to the ground in a dramatic fashion recreating a scene when the characters in the movie fell down.  To quote my husband, "Oh this is so going in your blog."

OF COURSE IT IS SO GOING IN THE BLOG! THE DAMN POST WROTE ITSELF!

I have watched this damn movie with the Kiddo every night since we were stupid enough to introduce him to it when he was three.  Three, people. He's fifteen. So let's think about that for a moment.  That he just saw his whole night time wind down routine get tossed aside and he "Mixed it up" and found his own way to cope. In fact, I think was safe to say he coped better than I did.  (I'm 45 and hormonal. Air Conditioning is my god now, people.)

Now while I'm all like a dog whose food bowl got moved with my routine, Kiddo was all "No big deal! Mix it up!".  He still didn't care that the power was out or that it was hot.  He was beyond delighted when I told him that we would be going to stay at Granny Fry's. (who had power and my sweet boyfriend, Air Conditioning.) He did not care at all when I said staying at hers meant that I would have to drive him to and from school instead riding with his beloved bus.  He kept saying "Mix it up!" and just thought it was a big adventure even though his parents are thinking this a bit of a pain in the arse.

Basically, it was the adults in his life that needed the social story more than he did.

I'm not saying this will work for every and any kid. Like all stuff with autism, when it works, it works. Don't question that shit. Seriously, don't do anything to draw attention. Act cool. They can smell fear.

But sometimes, it's really important to bring in a pro. I have no problem letting him think he got one over on us because it took an outside person to teach him something.  Dude, who do you think hired the guy? ;-)

Some things we don't "mix up". His need for Fruit Loops and mine for coffee. 

The Waiting

The waiting is the hardest part

Every day you see one more card

You take it on faith, you take it to the heart

The waiting is the hardest part

"The Waiting" Tom Petty and the Heartbreakers

The start of a new school year with the Kiddo. New classroom. New teacher, Some new paras and some new classmates. After three years with the previous teacher, a teacher who had to pick up and rebuild the Kiddo when we started there, I'm a little more nervous about this change that the Kiddo.  

The toughest part of this all will be the waiting to see if this change works and there is no way to rush it. At all.  As someone who has never liked waiting, it's once again a reminder that if you have a personal issue you need to work on, destiny will make sure you will get plenty of opportunities to learn those lessons through your kid.   You're looking at a gal who when her parents took her to Disney World as a 5 year old, looked at the long line to get in and immediately left her family to go stand with the family that was at the front. I can't exactly pull this move off with him. I have to wait around and see what autism and this change is going to bring.

I can ask him after school "How was your day?" and even on ones where I know exactly how it went because there was an email sent home or worse, a phone call, he will always say "Good" because he has learned this is the standard social norm answer.  I was once again reminded of this when on Saturday afternoon Kiddo announced how a certain kid in his class got in trouble. What exactly they did and how the classroom aide reacted to it.  I had to wait a full 24 hours before I really heard how his day went because it took him that long to formulate how to say that.  To process what went on and how it made him feel. I know a lot of parents don't get the full run down of their typical kid's day either but I'm willing to bet that if one of their classmates threw a desk, they might mention it to you a lot sooner than my Kiddo did. I have to worry and wonder "Did this scare him?" or "Did this inspire him for later on down the road?"

This class placement is also a reminder of the waiting that didn't work out.  So many years the focus was on his academics and waiting for the moments he would catch up with his typical age peers.  Its become more and more apparent that he won't and that's fine. I've always said I didn't care about handwriting just so long as he could sign a paycheck. I didn't care about math skills past the basics.  If I knew he could look at his money and be able to figure out what he could buy on a menu, that would be okay. I waited for more language and while some of that came, most of it is scripted lines he repeats as self soothing mantras. I keep waiting for more spontaneous conversation. Sometimes it happens. Sometimes not.

I kept waiting to catch up and it didn't happen. He needed to wait for me to catch up and realize that.

So his coursework this year will have a greater focus on life and job skills and believe me you, I have wanted and waited for that too. As a former Pre Voc teacher and job coach I have been asking about "When does job sampling start?" so much I'm pretty sure his IEP team has made it a drinking game.  I'm glad he'll be doing these things. I know he will be happy doing them. Kiddo likes to feel like he's useful. If this Kiddo was just a student to me, I know this would be the right choice. I would tell those parents we shouldn't wait on this.  We need to start job training.

I guess I am still waiting for that moment when I wouldn't be constantly doubting myself. Waiting to stop feeling sad about autism when it's brought so many wonderful people into our lives. Waiting to remember that this is where he is suppose to be without having to remind myself our situation is so much better than it was and I'm willing to wait to see what kind of progress we might make down the road.

The irony is Kiddo HATES waiting.  Multiple IEP goals type hate.  So very many social stories type hate. I'm still waiting for him to learn and accept waiting.  I guess if I ask that of him, I can wait and do the same.

I'm still waiting to get off the Isle of Sodor. 15 years and counting should give me tenure by now.