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. 

Angry at Autism

Since it's the summer, the Kiddo has a much different schedule. While he does attend an ESY (Extended School Year) aka "summer school" program, it's only four days a week and it's only for six weeks of the summer. Which leads to us have a lot of free time on our hands. If you are living the #TeamQuirky lifestyle this isn't the best idea to have gobs of unplanned for time in front of you and a Kiddo who thrives on structure.

So Mama Fry has to keep this boy busy. There are no lazy days of summer at French Fry Inc. As the years have gone on this gets both easier and harder to do.  Easier in the sense where I can say "Okay Kiddo, I have to hit the grocery store, post office, and pick up the dry cleaning. We're leaving at 10AM. You in?" and he will enthusiastically declare "YAAAAAASSSSSS!" like a drag queen who just found out Lady Gaga is working on a new album. He's just always game to do whatever and outings have gotten easier. Or I have just learned enough to make them work. I don't really know. I know enough not to question something if it's working.

But then they get harder as well because Mama Fry here gets cocky. I have a good couple of days with the Kiddo.  He's content and the behaviors are pretty chill and I start thinking BIG! Plus even though the summer goes by so quickly, some days feel like forever, ya know? I'd rather have some plans laid out and I don't want to always take him on errands.  I want to do fun stuff too.  There's also only so many kid's movies, beach days, swims in the pools, outings to the park or runs to the drive thru for "window fries" a gal can do.

What about New York City?

This is the idea I got in my head the other day.  I live at the Jersey Shore. Day trips into the city are easy enough to do. It would mean taking the train in and back. Hello? Did someone say "Train'?  That Polar Express movie watching Kiddo would already be down with this idea just based on the ride in and out of the city alone.

We could easily hop on one of those open air double decker tourist bus and go for a spin to see the sights. He's been on them before and he freaking loves them. They are right around Penn station. Getting on one would be cake.  Hop on and off and go somewhere for lunch.  Another thing that's gotten a bit easier. NYC is a city of hot dog carts on every corner. Feeding him wouldn't be an issue.

So what's the problem?  The flipping bathroom.

He's going to have to go but where? Usually my husband takes him. I, an adult female, cannot walk into a men's room with him. There is no way on God's green earth I am sending him into one ALONE. Oh HELLS NO. Not gonna happen. Twelve year old autistic kid with an intellectual disability and limited verbal skills. All the NOPES that ever NOPED!

So take him in with me to the women's room? Well, that's getting harder and harder to pull off.  For one reason, the Kiddo.  He can read restroom signs and he knows which one he's suppose to go into and what one he's not. Let me tell ya something, for a kid with limited verbal skills he let's his displeasure of being dragged in with his Mama be known. Loud and clear. The rules being THE RULES. There is no swaying his line of thinking.  I've been able to so far to plan some of our other outings around places where I know the bathrooms are single stall set ups, so sending him in isn't so scary.  Eventually I'm going to have to let him go into a big bathroom by himself. Just not planning on starting that at Penn Station in Manhattan which is where he is going to want to go right away after being on a train for a while.

I actually had a moment of "Okay, what guys do I know in the city that could meet us and walk the Kiddo into the men's room so he could go to the bathroom?" and that's when I realized that's probably gonna be hard to pull off.  Really, can you imagine getting that request? "Please come meet us so you can go watch my Kiddo go take a piss."  Yeah, not happening.

And this is when I get angry at autism. Like stupidly, irrationally angry at autism. I wanted to be able to surprise my Kiddo with "Forget errands. Let's go to NYC!" and have him think "My Mom ROCKS!". Instead, I'm stuck on where my son can pee because I worried for his safety. There are just too many risk factors of what could happen to him or what he could see that I cannot take that chance.  It frustrates me to no end that so much of our lives just seems to be ten times harder than most families.  I can whip up invites to a pity party for myself really quickly.  Those parties suck. They don't even give you goodie bags.

I can get very angry at autism.  I'm not proud of that but that's where I am sometimes in my life.  The only thing I can do is try to channel that anger into doing something productive with it.

Like looking up what sit down restaurants are in Penn Station that I could take the Kiddo for a side of fries AND using their stand alone bathroom which I could stand watch over. ;-) Now that could work!

Furrowing your brows just gives your wrinkles and I'd rather earn them by laughing. 

Thick Skinned

"How do you just deal with the comments and the ignorance and the looks? How do I get that thick skin that you have?" 

This part of an email I found in my inbox over the weekend.  I get this question a lot and I get why I get it a lot.  Apparently I have a no bullshit attitude. I can't say that description isn't accurate.

Is my skin thicker than most?  Well maybe it's just a case of being more used to those types of reactions towards us than it being thicker.  Experience and time is a Hell of a healer for those raw feelings of vulnerability.  Accepting that there will always be those not so accepting is just part of this #TeamQuirky lifestyle.  Sometimes it's a case of just simply being unexposed which leads to them being unaware about autism.  I can't get mad at that.  I can educate that. I can enlighten that. I and Kiddo can spread the good autism word all over that but I'm never mad at it.  (Truth be told, sometimes I get a little "You have got to be kidding me." with those folks because I think the world is really tiny and the stats are really high and how can anyone NOT know someone with autism by now.)  Getting annoyed though doesn't set the best tone for another person to be open to learning though.  So I swallow it.

Now willful ignorance? Plain old judgemental super parents?  The ones that are more concerned with being righteous than actually right? Cover your eyes and clutch your pearls those who can't handle  foul language but I have to unleash my inner Jersey Girl here.  FUCK THAT NOISE!

For those who prefer a kinder and gentler statement, I'll let indi singer Tori Amos say it for me.

"I'm gonna free myself from your opinion."
Tori Amos Unrepentant Geraldines

I guess that's a classier way to say it. ;-)

Every time you waste the time and energy caring about what some asshat has to say about you, your kid and your family, a baby unicorn cries or the terrorists win or an angel weeps or whatever analogy you need to get it in your head.

If someone is clearly ignorant to what is going on.  If someone is wondering out loud why your kid isn't talking, responding, interacting, or whatever autism challenge du jour you got going on, tell them why.  That's the first thing that's going to make you feel better and help you start to get that thick skin.  Doesn't matter if the person in question is 8 or 80.  Open your mouth. Be the voice that advocates and educates.  Do you think you just get a callous overnight? Nope, you got to do the work to develop one.  That starts by speaking up.

Now of course if your kid is mid meltdown or you really got your hands full, you cannot sit and have a "Come to Autism Jesus" conversation.  That being said, if a kid on the playground wanders up to yours and says "Why doesn't he/she talk?", tell them.  Don't expect the parent with them to do it. You do it. Give it to them straight from the source. As age appropriate as you can.  Right to the point.  (And when I think about it, this applies to adults too. Keep it simple.)

I know some folks might be thinking they need some pile of snappy one liners and comebacks but honestly, save those for the real jackasses of the world.  "He/she has autism" is really the best opening line you need.

If they are an asshole about your kid, I assure you they are an asshole about lots of other things too.  Don't waste your energy trying to change them. Give them a straw because they SUCK!  Seriously, that's how you get that thick skin. You just stop giving a crap.

Just an FYI, red lipstick pairs best with a IDGAF attitude. It's just science.