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. 

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! :-)

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.  

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? 

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.

"Is your child on medication?"

Okay, fair warning.  This blog post is going to be a bit of a rant but you all seem to like it when I let my mouth fly, so buckle up! Here I go.

"Is your child on medication? 

You know the only person that's allowed to ask you that?  Or let me put it this way, the only one that SHOULD ask you that?  A medical professional. A doctor.  A nurse. I'll even give you an EMT.  That's it.  Not a single other person should ever even think of saying this to you.

And yet, here I am.  A good eleven years into all this autism stuff with my Kiddo and I heard it again and again and again this week.  Three different people and no, not a single one is a developmental pediatrician in their spare time for kicks.

I'm really getting tired of being asked if my Kiddo is on medication or having it implied like it has never even occurred to us to put him on medication.  It's always said in a tone of "Silly Mama Fry. Aren't you a lucky one to have run into me so I may bestow upon you such an idea." I'm suppose to either bow to their greatness to have told me about it or launch in a diatribe of why I am violently opposed to the idea.

Spoiler Alert! He already is and guess what, it's not the magic bullet that folks seem to think it is. While it may make some symptoms of his autism, OCD, anxiety, and ADD a tad bit better, it's not wiping the slate clean here with the issues and challenges facing him daily.  I have no beef with medication.  Hell, I'm even on some myself! I also have no problem with folks who want to go a different way about it.  If that's your jam, you do you.

What I have a problem with this idea that this is going to be our problem solver cause it's so far from the case.  For every case of kid on them that has seen good results, I can give you countless emails from parents who have tried the latest wonder drug only for their kid to have every horrible side effect known to man and then a few extra.

If you are a teacher, speech therapist, teacher's aide, or any sort of school professional, you know what might be a better way to inquire if the behavior you are seeing in a client and or student is medication or non medication related? Here's how to word it.  My piece of advice to you. I won't even charge ya for it. ;-)

"Have you talked to your child's health care provider about these issues?"

Isn't that lovely? Not only does it address the issue but it reminds the parent just exactly where to go if that is an option that they may want to explore or not.  Boom! You're job is done plus it opens the door for the parent to volunteer information like "Yes, we had to make a recent dosage change." or "Well we have thought about it but maybe it's time."

Pros, I have no problem sharing any information with you about my Kiddo that might help you do your job to the best of your ability.  What I have a problem is when folks who aren't medical doctors starting throwing about the whole medication thing like it's going to be the salvation of my Kiddo that I was too stupid to even think about doing.

I warned ya I was feeling feisty. Now I'll just sit back and wait for all the comments from the pros who think I am Satan incarnate. ;-)

"Is my child on medication?"  only makes me want to reply "Are you on any?" 

August Angst

"Aw crap" Me, to my calendar.

We are entering the Hell Zone time of the year with the Kiddo.  ESY (Extended School Year) aka Summer School is wrapping up this week.  Full time school will not return to these parts till September 6th.  We have no major plans like a big vacation or anything else going on.  Lots of free time and we don't do to well with lots of free time. Traditionally, this is the part of the year where things get dicey.

Plus, we are in a very strange transition phase with the Kiddo.  While ESY at the middle school has gone much better than I could have anticapted, I'm not holding my breath that we are out of the woods just yet.  Sure, he's gotten to learn about the layout of a new building. He's been spoiled in a way because it's litterally two classes of kids there.  In a few weeks, hundreds of other kids will be going there too.  The bell will be ringing between classes.  Lots of new staff and teachers to get to know.  Despite dipping our toes in the water all summer, I suspect we will be up to our noses with surprises and transitions again in a few weeks.

Or he could surprise me completely and go with the flow and be all "What Ma? I'm fine!" even though I won't believe it and will still be on edge for weeks.

He's started to ask about what his jobs there will be.  At the old school, they put that Kiddo to work! Which I loved because a busy Kiddo is a happy and content Kiddo. Taking the lunch orders down to the cafeteria, delivering messages to teachers, sorting the mail in the main office, and stalking his favorite custodian Mr. "T" till he got a turn with the big vacuum.  He more than liked it, he loved it.

The old school even gave him this postal shirt to wear while he worked and then they let him keep it when he "graduated" because they enjoyed making me bawl over leaving. 

Now that's he's kind of in his groove, he wants to expand his comfort zone.  That's awesome but it's also filled with "Well, we'll see.".  Because he is the new guy and no longer the top dog. There may be kids already doing those jobs. We have to see what jobs are available and get a bit more settled.  I tried explaining that to him but it kind of fell on deaf ears with him.  So, he's a bit buzzing about that a lot.

My personal schedule has been a bit all over the place.  My father had a long hospital stay which meant I was running back and forth. It's also left me a bit stressed out and I'm not sure who was happier when he came home yesterday.  My father or the rest of the family.  It's been a long two and half weeks. Kiddo has been pretty good about it all.  Mostly.  ;-) We had a few head to head "Quirk offs" as I call them, where his needs for accommodations and my own clashed. Stuff like this is part of life and although I understand it's a challenge for the Kiddo to put himself in the shoes of another person and their viewpoint, he still struggles with it.  When my own stress level is kind of through the roof, it's really freaking hard to think "Well, this is a teachable moment for him!" and be all jazzed about that.  I just want the Kiddo to cut me some flipping slack already!

The Kiddo lives for "And then?".  That's his mantra. If it was the 90's, he'd have it tattooed around his forearm with a tribal pattern.  It boils down to I have to find an "And then?" activity for the Kiddo every day, several times a day.  Even when all I want to reply "And then Mama Fry has a margarita! Go fire up the blender. I'm going to show you how to make one."

But no bigger reminder that it was August were not one but two calls from school today about his behavior and his anxiety. To say it was through the roof was putting it mildly. This new school hadn't seen him at this point yet, so they sure got a lesson in it today.  Let me tell ya something, there is nothing like getting a call from school asking for help with what to do with your kid.  Because seriously, is there not an IEP and a behavior plan that came with my kiddo?  Did you think I would hold something back?  That I alone hold the secret to his autism and his meltdowns? Cause I assure you, I do not have it. The tips and tricks you seek are all in that nice little pile of forms with his name on it.

No, I did not take him home till it was time TO go home at his usual dismissal time. Cause there was no way on this planet Mama Fry was going to teach the Kiddo "Just have a meltdown at school. I'll come get ya."  NOPE! So on one of these last days of ESY, I too got to spend two and half hours at school.

I'll get through it because what other choice do I have here? I'll also ride out the Back to School transition too because again, it's what's next.  I'm just going to be earning quite a few more gray hairs while I do both of these.

I swear I'm just drinking this tonight for the antioxidants.