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Thursday, September 7, 2017

I hope it's a better year.

My social media newsfeed is a slew of "Back to school" shots.  Kids posing in their brand new outfits and lunch boxes that they will soon lose. Some smiling.  Some sulking.  It's cute. It's adorable. It's nice to see a bunch of good looking kids ready to take on a brand new year.

And I can tell you just by looking at the photo if they are autistic or not.  It's not by how they part their hair or how they hold a book bag.  It's how their parents caption their picture.

"I hope it's a better year."

Seriously, there must have been ten in a row that said this.  Each time I saw one, I'd checked.  Yep, a fellow #TeamQuirky member.  Over and over again.  Parents of the typical kids would just caption it as the first day of whatever grade and move on. Some of them even go super fancy and have the kids hold up a sign they made which I cannot do as I can't even draw a straight line with a ruler. Parents of autistic/special needs, just try to get their kids to sort of look at the camera and take whatever shot that they can get. I can bet you dollars to donuts that there was a photo shoot and there were about 20 other shots on their smartphone that they scrolled through before deciding on that one as "good enough". They have other things to worry about, which is pretty much everything else related to school.

And good Lord, do I get this. I get this so hard. Last year at this time things were so bad in this house and at his former school.  Just getting him out the door on the bus was a freaking production that left me drained by the time he went off to school.  Plus, I couldn't even catch my breath because I was waiting for the dreaded phone call to come.  Which it did, nearly every single day.  The personal best being from the principal on the second day of school telling me how "out of control" he was and I needed to come get him.  She treated us like we had somehow pulled a fast one and scammed him into her school.  No one there seemed to understand him or our shock at how bad things were.  They didn't know him or us.  They thought that this was the status quo. This went on for months till we found him a new school.

I can't even believe that an entire year has gone by since then.  He is happy. He is thriving. He is still loud as feck and a ten gallons of hyper in a five gallon bucket. He is The Kiddo. The one we know and love and is actually eager to go back to school.

Despite knowing he is in a much better educational placement, I still can't help but feel anxious.  I'm trying to hide it from Kiddo. I'm putting on a show of "Yay! School!!" but inside I am still freaking out. He went happily on the bus and according to the teacher it was a great first day.  I'm just hoping it stays that way.

I'm just hoping it's a better year too.


Sorry, I have no picture of me dancing in the street singing "Brand New Day" from The Wiz. 


Sunday, August 27, 2017

Do you know how hard we worked for that "Hi!"?

In an effort to help keep the Kiddo busy and for me to stay a bit sane, we went away for a couple of days to a resort that has an indoor water park.  We've been to it before and the Kiddo absolutely loves it.  We like it because it's just big enough to keep him busy but small enough to keep him contained or be "on" him if trouble or an autism misunderstanding comes up.  He was pretty excited to go. I was excited to not have to cook for a few days. It was a win/win all around.

One of the times Kiddo and I hit it alone so my husband could go get his presidential history buff on and go spends a thousand hours touring James Buchanan's house. Despite enjoying all the numbers that go with the presidents (Number 15!), that is pretty much where the Kiddo's interests ends.  Since that home was without pool slides, that was not an activity for him.  I was happy to go with the Kiddo to the park because I knew he would be happy. I was happy my husband was getting his historical jollies on without having to rush or tend to autism at the same time.  I also knew he would tag me out later and take him out and I'd put my feet up and read. It's how we do vacations.  A non stop game of "Tag, you're the responsible adult!".

It wasn't too busy when we hit the park. I set up camp with our towels and stuff and tried not to think too much about the soup of kid pee and germs I was most likely wading in. This seemed to be the visit where Kiddo really didn't need me to run autism interference.  At all.  He patiently waited his turn at the slides.  He didn't cut in front of any other kids.  He followed the rules of no running and making sure he got out of the way at the end of the slides as soon as he went down them so the next kid could go.  After a good fifteen minutes I realized I could get out of the petri dish umm I mean, pool. I could go sit down! (In a seat with the best vantage point to see the whole area and be by the one escape route...ummm... I mean, exit.)

I could be like one of those parents of those neurotypical kids.  GASP!  I know.  So bizarre.

But because I am still a "Smother Mother", I made it a point to lap around the place now and then to keep tabs on him and make sure everything was okay.  This is is when I noticed that the Kiddo was in fact trying to be social.  In his usual way, he was pretty much ignoring/tolerating the kids.  He's never going to be the one to engage first. That's just him.  However, he does gravitate towards adults. I think he kind of understands that adults are "in charge" and will gladly lead him along to where he needs to go.  Be it in a conversation or when it's okay to be the next one to go down the really big slide.  As I expected, I saw him trying to engage with the only other adults in the River of Ringworm. The lifeguards.

"Hi Lifeguard!"

He might not know your name but he knew who you were.  He knew you were in charge and keeping all the kids safe. (Well safe from possible drowning. There was nothing they could do to save someone from the "Lake MRSA" they were swimming in.)  So every time my Kiddo passed by one he would stop and say hello.

We were in there for about two hours that time.  Guess how many said "Hi" or "Hey" or "Do you know anywhere else that is hiring because I can't soak in this giant pile of exploded swim diapers another day?"

None. Of. Them. Not that I saw. Not a single one.

Now, I get they are at work. I get they can't be having full conversations every single time my son swims by them.  They have to keep their eyes on the water.  Not a single one of them could smile and say "Hi" back?  Like take the 5 seconds and greet a kid. Is it that hard to do? Do they need a social story? I have plenty.  Seriously, I travel with them.  I have an app on my phone.  You never know when you are going to need one.

But here was my Kiddo happy to engage with another person, multiple times, and he was being ignored. Now because he is the original gansta of giving zero fecks, he would say it again and again.   He wasn't going to let it hold him back or get him down.  I can't help but wonder what he is thinking about it though.  We have worked so hard for years to get that kind of polite spontaneous engagement out of him and here's his moment and Pfffft. Nothing.  No response. No acknowledgement. Was he wondering to himself "Well, what's the point of all that work they keep making me do in speech and in school about how to be polite and then no one does it?"

Since I have had the Kiddo I have noticed that adults often ignore other kids that aren't their own.  I mean, I get it. If I hear a kid screaming somewhere I do the quick check of "Is that mine? No?" and breath a sigh of relief that I don't have to be "on" in that moment.

 Now that I have a Kiddo who has worked so freaking hard to get where he is with his speech and communication, any kid that starts talking to me, I answer them. It takes little effort on my part. We as adults are always on kids to be respectful to adults and yet when they are friendly and say "Hi Lifeguard!", they get ignored. It's kind of hypocritical, don't ya think?  So that's how I pay it forward into the universe and say Hello back.

Because it's the freaking polite thing to do and shit.  Be nice and say "Hi" to my Kiddo.  We worked hard for that god damn "Hi". Spot him a head nod or a ""Sup?" back.  It won't hurt you.

I might though. ;-)


Kiddo climbing the steps to the slide so he can jump in to get a fresh coat of kid cooties all over him. 


Thursday, August 10, 2017

August Angst Part Two. Electric Boogaloo

*clock strikes midnight ushering in August first*



August. I freaking hate this month.  If you follow me on Facebook, you know already that Kiddo hates Wednesdays so much we have dubbed them "WTF Wednesday" because we have just grown to accept that the day is going to suck donkey balls.  It's just how it is.

How he feels about hump day is how I feel about August and Autism. It is not a good combo. Not a good look for the House of Fry.  Not. At. All.

I do not know what it is about this stinking month but the Kiddo, like clockwork, falls apart every single year.  Maybe it's the ending of ESY and the long stretch of no structure ahead.  Well, no structure from school.  Trust me. Mama Fry runs a tight ship around here. Correction, Kiddo runs a tight ship around here.  Maybe it's being away from his classmates and being an only kid makes him feel lonely. Maybe it's the planets being out of sync with the Sun and the position of the Moon.  All I know is, it's it's consistent with being Hell wrapped in chaos topped with a mayhem bow.

But we power through because despite me trying to convince my doctor that I need to be placed into a medically induced coma for the month, I have no choice.  I'm not really taking it one day at a time but more like one moment at a time.  It's all I can do.

What I do have in my corner is a little help from the state's Perform Care system.  We finally have some people coming to the house to work with the Kiddo and it's been going pretty well.  We have successfully gone through the stages the Kiddo getting to know them. Phase 1, act adorable. Phase 2, act mischievously. Phase 3, question everything. Phase 4, raise HELL. Phase 5, Accept the fact these folks are coming to the house.  The honeymoon period was definitely over when he first melted down hard in front of them.  He usually only saves that for folks he loves, so honestly, they ought to take it as a compliment when he tried to lunge at them.

Since it's going well, we're adding to it.  Behaviors are our priority right now, followed by being an independent person a close second.  It's also made me aware that while I need to add more of that to his routine, we need to end some of the parts of his old one.

Like finally breaking up with the magical speech therapist who graduated from Hogwarts.  You may be thinking "Isn't this the one that gets him to eat all sorts of different foods? Are you crazy?? Wait, she'll have an opening. Does she take my insurance?"

But it's absolutely time.  Speech wise, it's as good as it's going to get with him.  I knew there would be a time where we would have to make choices like this.  When to stop things even though those things weren't completely fixed or done or I don't know what to call it.  I've had to break up with therapists before.  (Read all about it here.) I don't know how this is going to go over with the Kiddo as he absolutely adores her and I have a mad respect for that woman. I'm sitting here thinking "Can I bring a six pack to the final session? Cause she's really earned it."

There's a small part of me that's like "Girl, why on earth are you making a big change like this in August?" but I also know that I accommodate my Kiddo A LOT. Delaying things a month or two isn't going to give him what he needs.  If things are going to be topsy turvy,  might as make the changes that need to happen anyway.

Oh August, you make me your bitch every year. I know I've said it before.  Autism is easy. It's the anxiety that comes with it that needs to go kick rocks in flip flops.

Wish us luck and a quick month!

Sunday, July 30, 2017

Where should I move to get the best autism services?

If I had a dollar for every time this question was emailed or tweeted at me, I'd have my Kidd's co pays for speech therapy paid for life.  Heck, probably enough dollars to hire the speech therapist to hang out at my house for the weekend.  (Which I bet she would game for because she knows I have a pool and a bar in my basement.)

It sounds like such a simple question and one that shouldn't be so complicated to answer but like most things with autism, it is!  It should be black and white but it is not. Which is ironic seeing as autism thinking really doesn't do well with shades of gray.

The thing is, there's no magical list one can produce to answer this question.  Now I am sure there is someone right now reading this thinking "No, there totally is this article I found online about what states and school districts are best and which ones are the worst. Let me go link drop it and not read the rest of this piece even though Mama Fry took the time to write.  I have other things to do, like answering Buzzfeed quizzes to find out what shape of pasta I am.".  Link droppers, hear me out.  That's the first part of this.  That article you think sums it all up? There are so many of these articles written at different times and from different sources. It's almost overwhelming the sheer volume of them.

I totally get though why so many people ask this question.  There are multiple reasons why.  Some move because of work and don't want their kid's getting screwed over.  Some do it because they have HAD it with their current school district and figure it has to be better somewhere else.  Here are just a few things to think about before accepting some article you found online as the gospel according to autism school districts.

1) The different types of disabilities.  We all know the cliche. You met one kid with autism means you have met only one kid with autism.  Meaning, my Kiddo is different than your kiddo.  My child's needs can be and often are completely different than any other child's.  Kiddo is no longer in my town's middle school but there are other students there who have disabilities.  That school was unable to meet his needs but clearly they are meeting other students' needs.  At least, I hope they are but I'm thinking their parents would yank them out if they weren't, ya know?  It boils down to my Kiddo is very different than theirs. If that school is working for them, good.  So while I might share our story of how it rolled for us (like a bus over our heads), it's just that. Our experience. It's not the only experience one can have there. Which brings me to my next point...

2) A school district and experience can change drastically in the years your child attends.  As I mentioned above or if you have been following our story for a while now, the transition to middle school was, for lack of better words, a clusterfuck.  Now had you asked me about our school district  prior to that point like when he was in the town's early intervention preschool or his kick ass elementary, I would have been helping you pack to move to my town.  Those two schools were fantastic with the Kiddo and his needs.  Again though, it's just our experience.  There were other families I know that weren't getting what they needed or wanted for their kids.  No place is perfect.  If you asked me now what I thought of my town's middle school and high school program for special needs students, I got a middle finger salute answer for that.  I had no idea it would get that bad once he hit that age.  It was not something we wanted to have happen but at least we were able to find a private placement for him that gives him the supports he needs.  (And more importantly, the school district pays for it.)   Which leads into my next point...

3) Money. It's all well and good if someone declares "So and So district is the best district your kid can go to for school."  Can you afford to live there though?  Will you be able to change jobs and/or careers that easily?  We couldn't.  We're a one income family and my husband is a small business owner with partners. He is also only licensed to do his job in New Jersey.  To up and move to another state wouldn't be a breeze.  Not by a long shot.  I know we aren't the only ones in that kind of situation.  Sure moving to another state might help some problems but it could open up a whole other can of worms Like...

4) Family and friends that support.  We have my family in the local area and my husband's family a little farther away but still close enough that if we needed help, they could pitch in.  My mom has watched Kiddo vacuum her house many a time while I run around doing errands and my brother has had the Kiddo sleep over from time to time so Daddy Fry and I can have a date night here and there.  A pal of mine helped me out last summer watching the Kiddo for an hour because I had an autism speaking gig and my husband had a late night at work.  (Which Kiddo loved cause she cooked SO. MANY. FRIES.) My point is, we have some help when we need it.  I don't know about you but having that around is important.  Support like that can be hard to find and you can't always count on the next school district to solve all your problems because...

5) Good teachers in bad schools vs. Bad teachers in good schools. This applies to just about any student in a school, autistic or not.  There are fabulous teachers out there who empty their wallets and their hearts into a classroom and more often than not they are not in the fancy pants school district.  This is not to say that the teachers in the "better" ones are slackers though and I'm sure there are many a teacher in a "bad" one that's just given up or don't care.  Sometimes it's just the luck of the draw who is teaching your kid. I think it's pretty well established that a majority of the people going into education aren't there for the money. (Mainly because there isn't any.)

Now I know me bringing these things up probably doesn't solve the problem or answer the question on where to go but I bring them up because I think folks often forget them.  My best advice (not that you asked but hey, you're hear reading this anyway) is GOOGLE. Google the area and "autism" and see what comes up.  Hop on Facebook, type that area and autism into the search box and see what groups and pages pops up.  If you have no plans to move and you're staying put, answer questions about your area that people might post.  Don't answer ones were you don't know an area but your cousin's boyfriend's kid lives there and they said... You know what I mean.  Just stick to your turf.  If someone new moves into your hood and they are on #TeamQuirky, get to know them.  Be that "HOLY CRAP. HELP!" support person because you have been there.

Remember, we're #TeamQuirky, we take care of our own. We're kind of like the mafia but without guns and we're sleepy.

Kiddo knows we're not moving out of New Jersey ever.  I'm not leaving a land where I don't have to pump gas in my car.  43 years old. Never done it once. :-) 


Sunday, July 16, 2017

Sometimes I blame autism.

If you have been following us on social media, you know that we just had a whirlwind of pain, agony, dentistry and autism.  It's not a good combo. Kiddo managed to crack his two top front teeth while at school. How? I blame autism. Let me explain.

Upon earning his final token to get a reward he had been working for, one with high value, he got what I like to call "flappy happy". He jumped out of his seat and started bouncing up and down like Tigger from Winnie the Pooh. This is kind of a common thing to see with folks with autism.  When they feel an emotion, they feel it right now to their toes.  Sometimes it's a sign to me that the Kiddo is starting to get a bit overstimulated by a situation but more often than not it's just him expressing how he feels and it's usually when he feels AWESOME!!!

However, what was not awesome is what happened next.  In his flaps and jumps he tripped over an area rug in the room and his face slammed into a locker in the classroom.  BOOM! Top teeth cracked. As horrible as that was, Kiddo was less concerned about his physical well being and more concerned about missing the upcoming "water day" event that was happening at school that day.  Because that's just how his autistic mind works.  He was patched up by the school nurse and given the clearance to go.  They called me at home to tell me what happened and honest to God I wanted to cry. Mostly because he was hurt but I will be selfish but real here. Dental work and the Kiddo?  It's a fecking hot mess.  Just awful. Absolutely awful.

You see, he's done this move once before. While laying on his back in bed he dropped the iPad and it's very heavy case on his face and chipped one of his front teeth.  So this was not our first rodeo with major dental stuff.  In fact, it only happened about a year and some change ago.  So not only did he just knock out ALL the dental work from last time, he cracked another one too to boot!  Skillz!  My Kiddo has 'em!

And while I was on the phone arranging for an emergency appointment to get him seen by his dentist group I was really feeling sorry for myself.  In order to fix this the last time, we had to do sedated dentistry and that took, no lie, FOUR MONTHS to set up.  It is a giant pain in the ass.  One look at my Kiddo  and his new and improved hockey goalie smile he was sporting made me want to just crawl under a rock and hide.   (If you want to read about that adventure, you can check it out here.  "Talk is Cheap"

I kind of figured that was what would have to happen again but there was no way on earth this Kiddo of mine could live like this for a couple of months. It was bad.  Like really bad.  I got the confirmation of this when the dentist called his partner in to consult on what to do with him.  When they have to call for backup, you know it ain't good.  Kiddo managed to crack them both well enough that they HAD to do something for him today. No complaints from me but how the HELL were they going to do in the office?  They're both looking at me like "Well Mom, you know him best.  Think he'd let us get in there if we used some Nitrous Oxide aka Laughing Gas?"

Ummmm, your guess is as good as mine? I really had no idea.  That was never offered to us as an option before.  It was "Your kid cannot do a basic cleaning without four adults holding him down. Sedation.  ALL OF IT." At this point though he is in a crap ton of pain that he's actually admitting to,(He's got a crazy high tolerance for pain. He once dropped a bowling ball on his foot and kept bowling.) his jagged teeth are slicing up his lips and tongue repeatedly, and I'll admit it, it was kind of shocking/icky to look at this busted looking smile.  So we had to at least try.

This is when this dental group really rocked.  Though they typically close early on Fridays in the summer, they stayed open late for the Kiddo. This is the power of the Kiddo. He can frequently charm folks into doing stuff like this. Or maybe they just felt really bad for us. I'm not sure but I'm just glad they did. I just had to keep him entertained for the next three hours, we could come back when they were closed and they would attempt it. We had nothing to lose.  So I juggled because what else could I do at this point?   It gave me time to try and explain what was about to happen to him.  Oh and I got the EXTRA fun of not letting him eat for the next couple hours because of the work they were about to do.

Kiddo was pretty anxious before they started but there was something about the situation where he actually seemed to understand that this was a thing that they had to do. He got in the chair and allowed the dentist to put the Laughing Gas mask on him and HOLY COW, now I know what my Kiddo would look like if he was stoned.  If there was any silver lining in this, it was the entertainment of this Kiddo on Laughing Gas.  He could not stop giggling and singing the whole entire time. Including the time she had to take the big needle of Novocaine which made me feel woozy just looking at her do it.  I thought this would be the moment he would lose his collective shit.  Nope, just went along with it. I WAS IN SHOCK!

This is when the dentist said "Okay, this is what we're gonna do." and she rattled off a very basic check list for him about what work was going to be done so he could "check it off".  I loved her for that.  She kept the X-ray bib on him to act as a weighted blanket. I gave him one of his favorite fidgets to hold and we just went for it.

Now it wasn't perfect. He had moments here and there of trying to grab her hand but I was able to take his hand and hold it down without much of a fuss on his part. His aim was pretty punch drunk so he really couldn't grab her.  We did LOTS of singing and at one point three grown women were serenading the Kiddo the best of Thomas the Tank Engine songs.  There was a point towards the end where I almost started crying because I couldn't believe that we were actually almost done and that he had done it without needing full sedation.  I was so stinking proud of him.  I was practically beaming. I couldn't wait to tell all of you Fries because I knew you were going to get why this was such a huge deal.

Then we were done. I don't know how on earth we pulled it off but we did. From two cracked teeth to two brand new perfectly formed ones.  I could tell even Kiddo was pretty damn proud of himself.  Not gonna lie, I was also beyond grateful in my wallet as doing it without sedation was so much cheaper.

It was only later at night when I started feeling very guilty that I had just spent the past twenty four hours blaming autism.  I started thinking how it was the flapping from being overstimulated part of autism that caused him to get hurt in the first place.  It was the sensory issues from autism that made getting even a simple teeth cleaning an ordeal.  I spent hours through all of this being pissed off that a behavior through autism had hurt him and it was autism again that would make treating the injury even more difficult. I blamed the communication issues that come with it because I was convinced he wouldn't understand what needed to be done and he wouldn't really be able to tell us what was scary to him.

Sometimes I blame autism and then I blame myself for placing blame on a part of my son that he has no control or say about. I might as well place the blame on his left elbow or the freckles on his nose.  Autism is just part of the package.  You would think I'd be used to this stuff by now.  Maybe I should have asked for a hit of that Laughing Gas. ;-)

Kiddo celebrated being a brave boy in a #TeamQuirky way. Tackling dental drama and getting my stairs cleaned? Is this Heaven? I think it is! 









Friday, June 30, 2017

Dr. Williams and the wrong Autism Mom

"Oh cool!  I got a bunch of comments on my blog while I was sleeping. Must be those Australian readers of mine. Let me go read them and...Aw feck it.  Not this crap again!"

A little backstage view of my blog for you.  Every few days, my blog and social media gets slammed with this jackass who claims how this doctor can cure my kid.  Yes, I report the comments as spam and block the accounts but it sure doesn't stop them. Let's just say they have a fixated interest in me. 


Dr. Williams and your magical cures, I have HAD it with you.  Officially.  Now given how much you post on my blog and all the weird hours that you pop up, I know you're an overseas scam.  I'm pretty sure you're also a Nigerian prince who just needs help transferring money that is rightly mine due to a crazy ass story you spin that I am somehow related to you.

I have written previously about this sort of thing. He was a lovely fellow. You can read about that here.The List  You really ought to read it.  I'll wait.  I'll go get a coffee.

Are you back? Super! Anyway, in that previous installment of bullshite cures I was feeling very generous that day and blocked out the contact information of the person and their sales pitch from Hell. That guy actually sent me his phone number and as tempted as I was to share it with the world so all of you could give him an earful, I figured causing his voice mailbox to explode would be kind of mean.

But this "Dr. Williams" guy?  Well he seems extremely eager to hear from all of us as he posts his email publicly everywhere.   I think it's time we give the good "doctor" exactly what he is craving. LOTS OF ATTENTION!

You see "Dr. Williams", we the autism community are tired of snake oil salesmen and scams.  We are completely disgusted by people like yourself who prey upon families. We are sickened by folks like yourself that try to make a buck off of fear.  We have had it with folks like yourself who try to make autism look like a big scary monster.

The thing is "Dr. Williams", you messed with the wrong bitch. I have quite a few fellow #TeamQuirky folks that have my back.

So, since you seem so eager for pen pals, allow me to print your email address nice and big so we can all see it and send you some notes about what we think of you and your "product".

Drwilliams098765@gmail.com

Have a nice day "Dr. Williams".  (Oh, it case you weren't aware, that's Jersey Girl for "Go Feck Yourself.")















Monday, June 19, 2017

"Ways I Have Failed Bigly with Parenting a Kid with Autism."

Hi! If you haven't figured it out by now I really suck at all this. If anything can come from my failures, it's that  you can read blogs like mine and learn how to avoid doing stuff like this yourself. I'm like a walking PSA!

Take today for example. We finally have a therapist that's coming to the house to work with the Kiddo and so far it's been great! Kiddo really likes her and she has him doing all sorts of stuff. It's been great because I learned a long time ago that Kiddo will usually be extremely willing to learn and do stuff with a person that didn't have twelve hours of labor with him only to wind up having a C section and is still numb around the scar site to this day. (Not that I'm bitter or anything. It's just one of those things of his. He likes to "perform" for them, the attention junkie that he is.

Miss "J" has started showing him how to make his bed independently.  Last week, he was really pleased with himself and for a couple of days, kept it up. Proud of all that work. He didn't want to mess it up.  Of course, like a lot of stuff, he starts sliding back to his old messy ways.  I saw this morning he left it unmade and I left it like that knowing she was coming over.  "They can work on it later."

I should have checked the bed.

Like really, really, really should have checked the bed.

If you find yourself in a similar situation, check the bed.

So she goes in there with him to work on it again and she discovered pretty quickly that the blankets and sheets were wet.  Meaning he wet the bed and me, being a clueless dope, left it there on his bed all damn day for her to discover.

I wanted to crawl under the covers and die but I couldn't even do that because they were covered in pee. Really Kiddo? Like, really?  I passed a kidney stone while pregnant with you with NO pain medications to keep you safe.  This is my "thank you"?!?!?!

"Okay, we're going to learn how to strip the bed. Got sheets?' and like a trooper she had the Kiddo come on over and strip the bed.  She made him feel the damp parts and said "This is wet.  This is what wet sheets feel like."  and I hastily brought in a fresh set and ran out of his room with the wet ones mortified.

She doesn't get paid enough to touch my son's peed steeped sheets. She does not. I need to find out what kind of liquor she likes because damn, if she didn't earn a cocktail today.  Oh my God "J", I am so sorry. So very, very, very, sorry.  I will never not check the bed again.  I swear.

Folks, learn from this huge failure.

ALWAYS CHECK THE BED!

Kiddo busy looking up clips on YouTube on ways to get your mom to make your bed for you because life skills learning is a drag. 



Saturday, June 17, 2017

School's Out For Summer!

Holy smokes! It's the end of the school year.

This bears repeating.  We are at the finish line of the school year from HELL!  Amen and Jesus take the wheel because I don't know how the heck we got from where we were to where we are now.

Oh, I know.  We left the craptastic middle school and found a place that actually gets him and has these novel educational ideas like following his IEP and doesn't keep him confined to the same classroom all stinking day.  Hmmm, imagine that.

I've never had a school year that felt as long as this one did.  I'm sure it's because we have all been through so much but I'm not gonna lie.  I am happy to see this one wrap up as I am OVER IT! As I type this the Kiddo is doing his usual pacing route in my kitchen through the living room, self talking a mile a minute his exact schedule down to the last minute of his last day of school.

Kiddo's exact plans for the first day off. He's been practicing on the weekends. Yes, he is in there. 


The part that kind of bugs me the most?  I kind of feel like we lost half a year of schooling.  So much was bad that the rest of the year was literally just picking up the pieces. Time is the enemy with autism and it kind of kills me that so much was spent on stuff that should not have happened in the first place.  I know a bunch of you right now are thinking "Is this chick named Elsa because she needs to LET IT GO!".  I wish I could too.  It's exhausting being sad about something isn't it?

We have an exciting few weeks coming up though. We're headed out on a road trip to a family resort that we have been to before and loved.  Daddy Fry and I must check the website for it everyday, just staring at the pictures like it's our own social story.  Hell, we even had a whole conversation on what poolside cocktail we're going to order first. Kiddo is making his own schedule of visiting first the outside pool then the indoor one with french fry breaks in between. I look forward for not making a bed or cooking a mean for a couple of days.  If there was ever a vacation we earned, it's this one.

Then it's right back to school for the Kiddo when we get back.  Extended School Year aka "Summer School".  Now don't you feel bad for him for going. He has gone every year to ESY since he was three. He doesn't know any other way and frankly, a busy Kiddo is a happy Kiddo. That wraps up mid August though.  That's when sh*t will get interesting.  Over four weeks off before school starts again.  Yeah, I'm panicking already about keeping him busy. I'm considering renting him out to vacuum at people's houses. Hey, he's good at it and he's mooched long enough off of us. ;-)

Can't wait for the Kiddo's music therapist to teach him this one. 






Monday, June 5, 2017

$103,500

This is the cost for my Kiddo to attend his out of the district placement.

For one year.

Not including door to door transportation. From what I can gather, add about another 30 to 40 grand to that total.

My town's Board of Education had it's "big" meeting a few weeks ago and the budget is made public online.  Anyone can look it up in their meeting agenda. Which because I'm nosy I did but also because I know my town.  This is usually how I find out big changes are happening.  True to form, I learned that my son's caseworker is leaving.  She didn't tell me.  The meeting agenda did.  Had I not looked, I still would not know.  She still hasn't informed me.  I do not even know who is replacing her. Guess it will be a nice surprise for me one day.  Gee, so swell of ya school district.

But let's get back to that figure shall we? How do I know it?  Well there is a list of every single student that goes out of district and where and the cost. No, it does not list the students by name but since it lists one tuition and and the cost of a one to one aide at his school's name, I know it's him.  He's the only student in my town that goes there. (Currently.)

And you know what I learned with running my eyes over this list?  That it's a loooong one.  There are easily over thirty students going out of district for their education.  Now I know not all of them are kids with autism but given the rates in the state we live it (New Jersey is 1 in 41), I bet a good hunk of them happen to be on #TeamQuirky.  I started adding up the costs and when I hit around TWO MILLION DOLLARS, I stopped.  These are financial terms a Costco shopper like myself cannot put my head around.  Two million loads of laundry, that I know.  Two million dollars and counting??? Are you freaking serious???

Now we are damn lucky because our district pays for Kiddo to go to his school.  I know so many districts would be "NOPE". I am not knocking that at all.  What I question is doesn't the Board of Education see a whole lot of money going out of their district just to teach the students that live in the district they represent?  When the figure goes into the millions, shouldn't this be alarming? Or at least make them say "Hey." or something??  If my cable bill goes up, I tend to notice that.  You all aren't seeing this part of the budget rising?  I'm watching this part go up every single year.

Of course, since the budget went up the mommy grapevine started going. My own social circle of the Autism Moms Mafia were sending texts and emails back and forth saying the same of "HOLY CRAP! Is that the tuition for one year? Just the one??? If they don't pay it, then what????"  Then what indeed.  Cause despite this whole school choice/voucher thing that our pal Betsy DeVos is going on about, I don't exactly have the spare 90 plus grand a year to make up the difference for my Kiddo to go the school of our choice. If they did not pay, there is no way on earth short of selling both my kidneys and all the eggs in my ovaries that we could.  (And I'm pretty sure I need at least one kidney and I'm getting up there in years so no one is going to pay top dollar for my old lady eggs even if I list them as "vintage".)

Oh and get this.  Kiddo's school was ONE OF THE CHEAPEST!  The cheapest!  We actually did them a favor by picking where he went out of all the schools we toured. We saved them money.  YOU'RE WELCOME SCHOOL DISTRICT!  You're welcome.

But you know the worst part of this. Now knowing the exact number of the cost of his education (and all the other kids) I live in fear of what I just discussed above.  That some BOE member is gonna be all "Wait a minute.  We need a new football field or some sort of sports thingie. What? We don't have the money?  Oh wait, let's start slashing the budget."  You and I both know where their eyes are gonna land. And it will be done in that "Gee, do all these kids really need their one to one aides?" way or suddenly some of us will be told that our kids have magically improved so much that they can go back to their district.

Despite that fear though, not on my watch. Don't even think about it. My Kiddo is worth every freaking cent of that $103,500.00. He's 13 now and he'll be in that school till he is 21.  You better budget accordingly and tell the football team to hold a mother loving bake sale if they need something.

 My Kiddo and his education are more valuable than that.

"Dear Board of Education, There is a complete lack of french fries on the lunch menu each month. Please correct this atrocity."



Tuesday, May 23, 2017

Parenting PTSD

Parenting Post Traumatic Stress Disorder.  I swear to God.  This a thing. You cannot convince me otherwise.

AND I am not just saying this is one of those "Only Autism parents get this.".  I'm betting those Neurotypical parents get this too. We can't claim everything.  (Come on, you know if I don't say this one of them is bound to get their knickers in a twist over it. Oh shit. They're probably reading this too.  Just kidding NT parents.  Mama Fry is just being shady!) 

But "BECAUSE AUTISM", I can only speak about the parenting experiences I know.  Case in point. Every time one of you lovely and good looking readers send me an email or leave a comment telling me your story, so many times I go from "Gurl, I feel you!" to "HOLY CRAP!!! That's us!".  I am thrown right back into that place of worry, fear, and anxiety.  Even if the topic in question is something way in the past.  I have literally felt my chest tighten, my breathing quicken, and my head starts to sweat. (Which is annoying as feck because I have enough going on, let's ruin my hair on top of it. I'm from New Jersey for Christ's sake. You know how important hair volume is here?)

If you have been reading this blog for a while now, you know we have been in the mists of a loooooooong ass back and forth with New Jersey's Perform Care, a group that's suppose to help out kids like mine.  So far our experience has been that they neither perform nor really care. Honest to God,  I have never seen so much bureaucratic paperwork nonsense.  Countless meetings about what they are allegedly doing for my son without actually doing anything.  A lovely caseworker comes by once a month to tell me everything I already know but gosh darn it, he's got to get my signature on his chart that he saw me.  It took SEVEN months to get a therapist in here but finally we got one.  What did she bring with her?  A lot of early intervention memories that come flooding back.  Here we are again, therapists in my house.  Herding the dogs into a bedroom.  Trying to keep one area of my house clean so that it doesn't look like a dumpster on fire. A Kiddo that's delighted for the first few moments that they are here only to turn on the cranky side after twenty minutes because it's not fun anymore, it's work.   He knew she was on the schedule of things happening today and in his mind it was checked off as "done" the moment she walked into my house.  Hearing him whining and asking when she will leave every five seconds, makes me feel like a failure.  I wince every time I hear him complain and think "Oh Jeez Kiddo. Come on. DO you have to be that rude to company?" Of course, I know she's not company and it's not the first time she's probably heard complaints like that from a client but I can't help how I feel based on experiences I have had.

I feel bad too because it's his house. It's his safe spot.  It should be the one place on earth where he feels the most comfortable and happy and he's not.  Therefor, I feel just as stressed out as he is feeling and it sucks! I did not miss this shit. There's something to be said to going out to a therapist office.  You can kind of leave all that crap and junk at the door once you leave to go home.  Plus, I have to wear a bra and real pants while she is here.  That's a drag.  In my own house. That ain't right.

This week his school will be going to a local minor league baseball team game.  Should be fun right? Or it could be seen as returning to the scene of the crime.  Kiddo had a pretty EPIC meltdown at that place when he was a lot younger with us.  Bad enough for us never to return to the ballpark again. You have no idea how glad I am that I don't have to be on this trip with him.  I gladly hand this outing over to his teacher.  It's also on Wednesday, as in "WTF Wednesdays", as in the day that Kiddo hates more than any other day in the week BECAUSE AUTISM. Even though I'm a lucky bastard who doesn't have to go on this field trip, I know I will be wound tighter than a clock the whole day till he comes home.

Because autism, parenting PTSD flashbacks happen.  A lot. Sometimes they hit hard, sometimes you ca shake it off.  Either way, staying stuck in them doesn't help you and your kid.

If there was a soundtrack trigger to Parenting PTSD, it's anything from the Disney Pixar genre. 

Wednesday, May 10, 2017

Forgive

"Forgive, sounds good. 
Forget, I'm not sure I could. 
They say time heals everything
but I'm still waiting."  
Not Ready To Make Nice by the Dixie Chicks

It starts with such an innocent interaction but once again I had to play bomb squad and diffuse a situation about his old school. It's rather astounding that as much as we try to push forward and move on from it, we can get dragged right back to that horrible time in an instant.  All it took today was the sweet high school aged student that works the cash register at the local pizza joint to ask "Do you go to "W" middle school?"

We go this pizzeria every week after speech therapy. It's our thing. Probably started because I brought him there once and because autism, we are going there infinity.  I use the routine to our advantage. Making the Kiddo request what he wants and pay. The staff has gotten used to us and is patient with him.  I consider this a walking autism awareness educational opportunity.  So it wasn't odd for this young employee to want to ask him questions to be friendly but I'm betting she wasn't expecting his eyes to bug out of his head and yell "NO "W" SCHOOL!!!!!" in a sheer panic.  I quickly jump in and explain how he goes to a private school in another town and Boy, it's getting late, we got to get going and get home and Gee, it looks like rain. Better hustle. Thanks again! See you later! and I pretty much bum rush the Kiddo out of there to my car hoping like Hell we won't get into it about the school.

The ride home was a bit dicey. Him, constantly repeating that he doesn't go "THERE" anymore.  Me, reassuring him that he won't and also trying to explain that the question from the girl wasn't mean or really that out of line.  Let's move forward.  We were able to get home and he tucked into his pizza and I did some deep breathing in the kitchen that I narrowly avoided a rather explosive meltdown.

It also made me incredibly mad and upset.  He left that place in November and yet the fear is still there.   The pain is still very much raw, for the both of us.  I'm emotionally exhausted from when I have to play not only his Kiddo to English interrupter but also his "fixer". I never realized how many times I would have to be explaining his emotions to someone or in this case not so much explaining them but just trying to redirect the whole exchange.  The gal at the pizza place is nice but explaining that whole story to her?  Yeah, not happening.  Wrong time and place.

And I can't help but wonder when will I or Kiddo for the matter stop getting upset from these innocent exchanges. It's really hard to teach the Kiddo the idea of "forgive and forget" when I'm pretty sure he'll never forget.  While I'll most likely forget to do the simplest tasks like switching the wet clothes from the washer to the dryer, how my son was terrified of a school and that look on his face is etched in my brain. It's kind of hard to forgive a place that traumatized your heart that walks outside of your body.

All these months I have been purposely driving out of my way NOT to drive by the old middle school with the Kiddo in the car. I guess I'll keep doing that.

I however, have no problem when I am alone in the car to give it the proper one finger salute it deserves.  ;-)


Sunday, April 30, 2017

Today I was told...

Today I was told not to push my autistic son into situations where he would be uncomfortable and I needed to listen to autistic people. The thing is though, I did.

"The most important thing people did for me was to expose me to new things." Temple Grandin

If you don't know who she is, Dr. Grandin is the OG autism advocate. "A Loving Push", as she describes it. So I have and I will continue to do so because I have seen the difference this has made in my son's life. We've had success and we've had utter clusterfucks. I'll still keeping pushing though because the good outcomes are worth it. If it's good enough for Temple, it's good enough for The Kiddo.

I guess what you mean is I'm suppose to listen to autistic people but only ones you agree with.


Today I was told that I should not talk about any co morbid issues that come with autism during autism awareness month.  However, for the life of me I have yet to meet an autistic person that did not have any other co morbid issues or challenges.  Not to mention, isn't the point of awareness to clue folks in that autism comes with other issues?  If we don't talk about these challenges now, exactly when are we suppose to address these needs?  I will talk about these challenges this month and I will talk about these issues always.  If we don't talk about them, that's how the one sided stereotype of autism in the media and general knowledge will continue. Yeah, not on my watch.

So if you want to go around doing that, feel free.  I'm not.


Today I was self involved to air my feelings publicly. Well Jeez Honey, any writer of a blog knows that already. You're not exactly telling me anything that I don't already know.  Blogging, for the most part, is pretty self indulgent. I suspect you are concerned about "What if he read it one day?".  Fair enough and here's my response to that.  If my son can read this blog and understand it, all of it and get completely pissed off, I will sing "Amen and Hallelujah!". I will be absolutely thrilled that he was finally able to develop the comprehension needed to do so.  It will mean years of therapy, education, medical intervention, blood, sweat, and more tears (Mostly my own.)  than I can count actually worked. It will be validation that we actually made the right choices in his care and upbringing.  It will mean he is an independent, free thinking, self reliant person who is able to take care of himself.

That's all this autism mom could even hope to happen.  I will gladly pay for his future therapy bills and you can go about yelling "I told ya so." all you want. I'll be happy AF!


Today I was told my son wasn't autistic enough. I will add this to the times I have been told he simply too autistic to participate in activities and school environments.  All these years I have been living this Team Quirky lifestyle with him and now I find out there are levels of autism.  Well color me surprised!  Is it like the difference between a Muggle and a Mudblood in the wizarding world? Cause this Harry Potter fan can totally follow that.

Is Autism SPECTRUM Disorder some sort of video game with different levels my Kiddo has to earn?  Is there an app for that? Color me confused here but I thought the "Spectrum" part in the name meant there was more than one way to be with autism.


Today I was told by my son that he loves me and that is the only thing I ever worry about hearing. Feel free to keep telling me how I'm doing it wrong.  I mean, that's how this self involved blogging thing works. I write. You comment.  It's the circle of lifeeeeeeeeeee...

Today I am kind of glad it's the last day of Autism Awareness Month. Bet you are too since I just spent the past thirty days screwing it up. ;-)

Playing a little piano with the sheet music upside down. As you do. 

Saturday, April 22, 2017

Sad

I am not sad because my kid has autism.

You know what I'm sad about? It's all the other stuff that comes with the autism that can get bent.  The crippling anxiety, the obsessive compulsive disorder, the sensory processing issues, the hyperactivity, and the one that makes shit really freaking complicated, the intellectual disability.

Ya see, this is the kind of autism that doesn't get talked about in the glorious month of Autism Awareness.  Or at least I haven't seen it because my social media feeds is swimming in all the feel good inspiration memes.  Or the token stories of an autistic person that has some special awesome talent.  Which is cool. I don't begrudge these memes or stories but they are just so constantly one sided.  It's hard to feel hopeful and renewed when I know that this will never be our story. Not even close.

I have an almost 13 year old kid who still believes in Santa Claus and the Easter Bunny.

I have an almost 13 year old kid who still watching Baby Einstein when he wants to unwind.

I have an almost 13 year old kid who's bedroom looks like the Island of Sodor exploded in it.

I am not sad that he's not into typical teen aged boy stuff.  Although, to be honest, I'm not sure what that would even be.  What are they into?  They seem like such mysterious moody creatures but I'm pretty sure it's not searching for out of production Blue's Clues DVDs online. (Thank you sweet baby Jesus for eBay.)

I get sad that even when I am planning something that should be a fun, it's coupled with so much stress and back up of plans in case it goes bust.  Since it has so many times before. It makes me not want to go anywhere some days and I really have to talk myself into pushing him and myself outside our little comfort shell and try.  Plus, Kiddo has a built in bullshit detector. He knows when I am faltering. Just for once I would love to just be able to say a thing that should make him happy and not have to pull out a social story to go with it.

I think what gets me the saddest is that for every "feel good story" that I see my "civilian" pals sharing, I wonder do they really get what the day to day grind can be like? No mainstream media is covering that story.  The worry, the stress, the frustration.  Guess what folks? It's not fake news. It's our life.

And you know they aren't the ones reading this blog.  It's cool you guys are here but man, I kind of wish they were so they could get it.  I'd invite them over but that has it's own stress filled complications. Unless they bring "window fries because well, fries.

That's the stuff about autism that I want people to be aware about.

Here's your token inspirational shot of my autistic Kiddo walking a long journey.  Wait, I forgot to slap a puzzle piece on it! 







Wednesday, April 5, 2017

The Stupid Ass Stuff I Still Do As An Autism Parent.

I wanted to touch base with the Kiddo's teacher and the BCBA at his school.  While they are pretty good about answering emails and communicating in the notebook, there's nothing like a face to face sit down.  As I was driving to my umpteen meeting about my Kiddo, I couldn't help but feel nervous.  It's not me we are meeting about.  Why am I taking it so personally?  It's hard not to when the topic of the conversation is about a person you just happen to have grown inside of you for nine months.

But despite the fact that the Kiddo is twelve and has been in school since the day after he turned three, this is the stupid ass stuff that I still do as an autism parent.  Worry about every single meeting and have that general sinking feeling of "being in trouble" with the school.  I suppose our time at the town's babysitting *cough* pardon me, I mean "middle school" also has not helped with the general feeling of meetings.

And what happened? It was a pretty good meeting. We covered a lot.  There were no real surprises. Discussed a lot of different ideas of what works and what doesn't.  By the time I left I was feeling rather happy about it all.  So what the heck Mama Fry?  Why do I get myself into such states of mind?

Here's another example of the stupid ass stuff I do.  If you have been following this blog for a while, you know all about "WTF Wednesdays". If you don't, well, long story short. Kiddo hates Wednesday because autism.  Honestly. That's all I can say to explain it. It's just one of those thing #TeamQuirky things about him that I've learned to accept.  Anyway, I heard from the teacher today that he had a much better Wednesday than I thought he would. (I had emailed her this morning that he was wound for sound and to give her a chance to either gear up or fake being sick and call out.)  What was different about today? She kept him SUPER BUSY! Like she always keeps him going but she really cranked up the special jobs for him today and he loved it.  Kiddo loves having a job.  She even got him an extra shift at the school store for him to do today.

I was telling my husband this tonight and he just chuckled and said "Wasn't this the exact thing we told the old middle school to do with him? That they never did?".  Yep, it was.  We told them that time and again and they never fecking did it.

So what stupid ass thing did I do? I started brooding on it. I went back full force to that time and place with them when we were all so super miserable.  Why? What is the function of this?  It serves no purpose. We are never going back there. It's pointless.  But yes, let me just get good and miserable for the sake of it. Let me just waste my time and be angry at how they failed him.  Somebody call Cher and get her to slap me and yell "SNAP OUT OF IT" Moonstruck style at me.



Fixating, it's not just for my Kiddo.  I am guilty of it too.  Good gravy, I'm the one that's suppose to be raising him and teaching him how to navigate through a world not made for him and I can't even get my shit together.  I need to write a social story for myself.

"It's okay to remember bad stuff.

It doesn't mean it's going to happen all the time.

Just remember to take a deep breath and order another side of fries."

Then end. :-)
"Geez Mom. You thought I was the one that obsesses too much? Now let me get back to looking up different manufacturers of school buses."








Thursday, March 16, 2017

He may be your client...

But he's my kid.

You see a name on a folder. I see my heart walking outside of my body.

Since November we have been working with a state agency called Perform Care. It was recommended to use by our school district caseworker.  She sung the praises of how much it would help. I eyed her over my glasses because I knew she had no idea how all this stuff works.  Suuuuuure. It would be just that simple.

Here it is, middle of March.  Ask me if a Behavior Therapist has been to my house yet? Better yet, ask me if the caseworker assigned to my Kiddo has EVEN MET the Kiddo?

Yesterday I got to the point of autism parenting that breaks me.  Being so frustrated that I cried while I was speaking. If you get me to that point, your ass better run. I can blow off anger. I can shake off being sad.  Making my mascara run down my face because I am trying to get the therapy my Kiddo needs, I hope you have your affairs in order and have made peace with your maker.

I am so freaking tired of this dance.  The amount of bureaucratic nonsense is astounding. To all the school caseworkers and teachers in New Jersey that say "Call Perform Care" to the parents of the students they serve, I'd like you to know that it's close to pointless to suggest it like it's a solution that will end the problem. The only thing Perform Care has done so far is make me have dozens of meetings and hundreds of phone calls. It is a glorified run around of paper pushing.  Every meeting ends with whatever person this caseworker has sent du jour recommending another thing and whatever that thing is, they don't do. "But call your caseworker!"

I lost my ever loving shit yesterday. All over the phone to multiple people. I keep hearing from them how they serve the whole family and yet the only person in my family that sees or talks to them the most is me.  I didn't sign up for Perform Care. I signed my KIDDO up for it.

And here we are, all these months later, and he still hasn't been seen by a behavior therapist. Each phone call to make another appointment to discuss things means another week is added on to this.  I'm ready to throw in the towel completely with this agency because it's just a lot aggravation with no payoff.

Of course, I can't because I need to have my son in the system. In as many places in the system as we can get him.  So as much as I just want to throw up the white flag and both my middle fingers at this, I press on.

By the end of the day yesterday I had managed to schedule yet another meeting with another agency to come see my Kiddo and maybe they'll be able to offer him services.  I'm not holding my breath and I'm pretty sure in the Kiddo's file is a big note that the mother is a raving lunatic.

I'm okay with that. :-)


Get frustrated. Cry. Scream. Repeat. 


Monday, March 13, 2017

AngelSense. A review and peace of mind.

I am often asked to recommend a good GPS device. One name that I have heard time and again was AngelSense. So I was pretty happy when the company reached out to me and asked me to review their product for my blog and become a part of their affiliate program.  (Full disclosure. They provided me with the device and a few months of service for free.)

Now bolting hasn't always been an issue for the Kiddo till this year. Call it puberty. Call it all the changes in the three schools he's been in less than a year. It doesn't happen a lot but it has happened. He's also in a program now were he goes on a lot of outside the school instructional trips.  Twice a month his class stops at multiple locations on a single outing. Yeah, this "Smother" gets a little worried about that.

I will be very honest. I was extremely skeptical when I received it. It is kind of big but I have to say my son doesn't seem to care. I have it pinned in the pocket of his coat for now.  Come summer I will have to pin it to his waistband of his shorts.  Here is a short video of what it looks like and how to attach it to clothes.  You are given a special magnet key that helps take off the fasteners.  You cannot remove the fasteners without it.  Kiddo tried. That thing did not budge.

Here's a clip of what you get and how to attach it. 


This works in conjunction with a free app you can download to your smartphone.  The app itself is very user friendly. You can also set it up to send you text and email alerts when your kid is "on the go".  Another feature that I loved was it clocks how fast the van/bus goes with my Kiddo on it.

Oh Helllllo Speed Demon Van Driver. Let's have a chat, shall we?  (And now we have a different driver.) 

I can now track exactly where he is on the ride home.  That's pretty handy to know when I have to put on real pants and a bra to get him off the bus. ;-) 

When your child stops somewhere it will notify you and ask you to name it if it's a stop your child goes to regularly. (i.e. School, Grandma's, Speech Therapy, "Window Fries".)  I would say we have pretty much all of his usual haunts programmed in there now.  This has been great on the days when he has that multiple stop class trip. I can see exactly what part of the trip they are on.

Another neat feature. You can "listen in" to your child's environment simply by pressing a button on the app.  You can then listen on your phone to what's going on.  With all the changes that keep happening with the Kiddo, this has been a good feature just to check in on him.  It was highly amusing to hear him rattling off the exit signs on his bus ride to school.  My only complaint about this is it is really easy to get addicted to listening in ALL THE TIME.  (Helicopter Mom much?)  I've managed to ween myself off of this.  It's nice to know that I have it should we need it.  Also, it needs to be noted that what you hear isn't always crystal clear. It can be muffled sometimes but it's kind of to be expected. It's really no different than if you had your phone in your pocket and butt dialed someone.

You get about a day's worth of battery life with this.  It means charging it over night and I have a text alert set up to both remind me to plug it in and to attach it to the Kiddo the next morning.  Also a nice feature as I am Hella forgetful.

Translation: "Get off Twitter and go put the device in his pocket!" 


All in all, I went from "Well, we'll see if this works." to "TEAM ANGELSENSE!"  It's serious peace of mind for this autism mom and I'm kind of kicking myself for not have tried it sooner.   (Especially when stuff was so bad at his old school.)  If you have been following me a while now, you know I don't usually post product reviews or affiliate links. It's usually because the stuff folks send me to review does not live up to the hype.  I don't want to waste your time or money getting your hopes up.  This product, for us, works. If elopement is a worry of yours or just want a little extra security, this is money well spent.

If you are looking to order one for your loved one with autism or just for more product info, click here!AngelSense (Full disclosure. This is an affiliate link, which means I will receive a commission if you purchase this device using this link.) So if you have been wondering about this product, I can say it honestly delivered and then some.

Side of fries for you AngelSense!














Monday, March 6, 2017

Don't be a jerk.

I've been blogging about autism since 2012 but autism has been in my life in some way since roughly 1998 or so.  (I worked in a private special needs school before I had the Kiddo and leveled up.) Here's what I have learned in almost 20 years of this stuff.

Don't be a jerk.

Or an ass. Or a dick. Or the curse word of a choosing.  Whatever floats your boat. I'm not telling you how to live your life.  

But what I will say is it never ceases to AMAZE/HORRIFY me when family act like jerks to those in their family with autism and to their immediate caregivers. Seriously, what is with this crap?  There's not a week that goes by where I don't get an email to my blog saying something along the lines of "My family does not get it. What do I do?" Or "We stopped getting invited to family gatherings because of our kid with autism."  Or the one that really makes me hit the roof, "Our extended family invites our typical kids places but doesn't ask to spend time with our autistic ones."

Let's face it. You have to be a real special sort of asshole to invite the typical kid to something and purposely leave out the autistic one, while hoping like Hell that the parents either don't notice or mind.  I will be the first person to admit that you have to know when to hold 'em and when to fold 'em when it comes to taking your autistic kids places.  You have to be realistic. You're looking at a woman that scheduled her father's funeral around her son being in school because being quiet during a solemn ceremony would just not have happened and it was much better for the Kiddo to stay on his routine at the brand new school he had only just started a few weeks before. 

But this shunning that I see happening far too much in families, that shit has got to stop. It's not just autism families I see this in. All disabilities seem to get a taste of this.  Really?  Aren't we all better than that?  Have we not evolved well past sending all those with any sort of disability off to some institution.  Never to mingle with the rest of the world again. Come on!

Now before you may go "But...but...but... We don't know how to be with those autistic kids.  We don't know what they need or how to do it the right way."  Well newsflash for ya, neither do their parents.  Believe it or not we were not given a swag bag at the diagnosis that comes with an instruction manual.  They're learning as they go.  Join the class.  Learn with them. They are the ones with them all the time.   Consider them the smart kid in the class that you can ask to help you with your homework.

I'll even give you a little cheat sheet/Cliff Notes version on this.  Planning an event where both autistic and neurotypical events might be tricky but it's not impossible.  Clearly parents that have kids of each do it EVERY SINGLE DAMN DAY!  Ask their caregivers what's the best kind of thing for all involved.  That's all you gotta do.  That's it.  Ask.  BOOM! Pretty easy.

And if you think you aren't hurting those kids both autistic and neurotypical when you do this mess, I can assure you, they know what you are doing.   All kids can smell bullshit.  Some might not be able to say it with words but I know that Kiddo can lay some side eye on a jerk that can make that person question all of their life choices.

If you are that autism parent/caregiver that currently has this happening to you, I'm sorry. It sucks. There is no excuse for it. At all. If your family won't change, well, family can be made too. Find your tribe and stick with #TeamQuirky.  You know I'd share fries with you all any day of the week. My Kiddo might announce when it's time for you to leave because autism but you get it. You live this flappy lifestyle.

In the immortal words of George Costanza....





Monday, February 27, 2017

It's okay to feel frustrated.

"They say misery loves company
We could start a company and make misery 
Frustrated Incorporated"
Soul Asylum

Last week Kiddo and I were co CEOs of Frustrated Incorporated.  It was a weird week.  After a four day holiday weekend, there was a whole lot of Monday in our Tuesday.  Kiddo was NOT. HAVING. IT. I was kind of discouraged by that but tried to brush it off as just going back to the routine after four days of doing whatever he wanted.  Then Wednesday was here and I kind of had a little hope it wouldn't be that bad this time because there was a school wide trip to a local kid's museum.  Maybe we could skip that whole WTF Wednesday/let's rush the whole day to get to the thing he wants after school (music therapy).

Nope, it's like I was new here or something. He proved WTF Wednesday is portable and took that meltdown show on the road.   Two solid days of misery.  Surely we can just get back in the saddle for Thursday.  We never see behaviors on Thursdays at school.

WRONG!  Wrong again Mama Fry.  Kiddo decided that he really needed to obsess on getting to school on Thursday and do nothing other than running on the gym treadmill.  (Which is an activity he "works" for. It's his idea of fun.)  So he had gobs of behaviors about that on Thursday and I really was scratching my head at this point thinking "What the Hell is with this week????"  Three in row.  We haven't had that since his days at the old awful middle school.

Friday was better but not perfect either.  Lots of anxiety. Lots of grabbing.  I can't figure out what this is. I don't think there will be an answer to his anxiety or a solution on how to solve it. It's driving my around the bend and I can't help but think if I'm ready to rip my own hair out, he must feel even worse than I do.

Cause this isn't about me but at the same time, I can't help but take it personal. I can't help but get frustrated.  I can't help but get anxious because he has so much anxiety.

All the stuff that we do to help him, I am seeing that all it does is make things worse.  He can't "work" for anything without that becoming part of the behaviors. He starts to fixate on the reward so much that it consumes him.  It already was hard enough to find things that motivates him. So little does. To have these things then become part of the problem makes me feel like I'm banging my head against a brick wall.  We ask for help and this is what we get and it's only compounding the problem.  What are we suppose to do here?

And just when I think we have a clue to the problem and some solutions to nipping stuff in the bud before it starts, he manages to find a way around that too.  It's like he's looking to be miserable.  There is just no other way to explain it. We try not to tell him about big events or switches to the schedule because he gets so fixated on them.  So if we say nothing special is coming up, you know what this kid does? He'll take a run of the mill thing in his routine or day and turn that into the big special thing and fixate on that instead.  It's baffling.

Plus there is the stuff we simply cannot hide from him that he will always obsess on, like birthdays and holidays. I can't exactly surprise him by hiding Christmas or his birthday. Did I mention he's twelve?  So yeah, let's add moody teenage hormones to this mix.

His other big behavior when he isn't in a mood is to just scream, growl, roar and yell.  ALL. THE. TIME.  Constantly. Yes, constantly. He's getting some sort of sensory input from it as well. I have yet to find an appropriate replacement behavior for it. Planned ignoring doesn't work. Addressing it doesn't work.  Mommy losing her shit about it and yelling at him for yelling doesn't work. (Yes, I'm aware of the irony but every Mom has her noise limit.)

I won't lie. It's hard to keep finding the silver lining the longer this stuff all goes on.  When you have a kid who's hobby is waxing nostalgic on all the times life has disappointed him and prefers to find ways to stay focused on frustration, it's hard NOT to join him in that feeling.  And when he's not doing that, he's just screaming so much you find yourself wondering "Is it possible to sprain your ear drums?"  The two moods this week were miserable or screaming like Ozzy Osborne on a bender.  It's stress on a shit sandwich.

The only thing I can do is just own the fact that it's okay to get frustrated with autism. It's even okay for me to feel frustrated with him.  I'm a parent. He's the kid.  That's a tale as old as time. I'm not the first mom that's thought about selling her kid to the gypsies and I won't be the last either. So no, I'm not going to feel guilty or stay stuck in that feeling for long.

It's okay for me to get sad. It's okay for me to get pissed off about it. It's okay because I know Kiddo is going through all this stuff too.

On Friday my husband made the very wise suggestion we eat out at a local beer garden. That idea was more than okay. I married a keeper. 









Friday, February 17, 2017

Kiddo and the new school. An update.

As some of you long timers might know, Fall of 2016 was the year of DRAMA with school and the Kiddo. Long story short, we wound up having to switch schools mid year.  We were really worried about it.  It meant touring schools with him in tow and trying to find the magic combination of one that would take him and one that would suit him best.

We got lucky and seem to have found one that is providing what he needs and more importantly, he likes it! I just realized the other day that almost three months have gone by and I found myself thinking about what's changed. For the most part, it's been steady on progress.  Both academically and behaviorally.  I would even say socially he's a bit more engaged lately.  He scripts a lot about the different staff members there. He even started to wonder what do they do when all the kids go home at night and delights when I say the same answer of "Home to their families! They don't live at school!"

It hasn't been without hiccups.  A few weeks ago we had to make a transportation switch. Kiddo was just not doing well on a bus full of kids just like him.  It seemed to be a ripple effect. One kid would go off, they all would go off. He was butting heads with another kid.  The school and the bus tried various tricks. It just wasn't working. It was suggested the route would be changed but the driver couldn't do it.  It was time to get him private transportation.  Door to door. Just him, a driver and and an aide.

And this was a tough switch for him to swallow because it meant riding in a mini van and not the bus. He really loves school buses. Mainly because they remind him of Thomas trains because they are all numbered.  However, this is what we had to do. I can't have him having behaviors on a bus everyday just because he likes riding the bus.  I didn't sugarcoat it with him.  "You're going on this mini van now to school. Sorry that bums you out but we can't have that behavior on a bus."

It's been two weeks now with the mini van and I have to say, that's been going really well.  I asked the driver "Well, how has it been?" and he told me "He's been awesome. I don't know what behaviors you are talking about. He's been great!" (I had given him a heads up about "WTF Wednesdays".)  I noticed his anxiety on Wednesday mornings before school has lessened too.  So maybe this was a step in the right direction.  If it helps having a shorter route for the Kiddo to go to school, maybe that's something that they can arrange down the road for him to be a on a bus again with other kids.  I also know realistically that's what I want for him too. He's not going to be driving. He'll always need some sort of transportation and it most likely be with other people.  It's something we'll have to tackle with him. Learning how to cope with longer rides. Dealing with other people's behaviors and reactions to his.  We'll get there. I'm just happy that this current "Well, let's try this and see how it works." actually seems to be working.

His school does a lot of trips that focus on independent living skills. I love that they do that. He has to make shopping lists and has a budget. (They have them buy all their snacks for school.) He has to find what he needs in the store and then bring it to the cashier.  Then they all go out to lunch and he has to order his own food.  (That part has been his favorite. If he had it his way, Kiddo would eat out for lunch every day.)  They work on laundry skills and cleaning too. He's been showing off his prowess with vacuuming.

Another part that makes me happy is all seeing the academic work that they do.  It's clear to me this teacher follows the best rule about autism, "Presume competence."  They do social studies, science experiments,  spelling tests, etc.  All the stuff any middle school student usually does.  (And in his case, all the stuff that his old middle school wasn't even bothering to do.)  He has homework again! He grumbles like any 12 year old would about having to do it some days, but hey, I'll take that milestone.

My favorite part is that they have put this Kiddo to work.  A busy Kiddo is a happy Kiddo. He has a job at their school store, which sells snacks and drinks. He loves it!  I like to ask him "What was the hot seller today?" and he usually happy to report that Cheez Its are still the big seller. On Thursday the teacher had him delivering flyers to all the classrooms in the school and he loved doing that because it meant also getting to do his favorite hobby, wander the halls and saying "HI!" to everyone.

We still have bumps and bruises.  It's not perfect but it's progress.  I feel a lot more hopeful than I was a few months ago. Fingers crossed that this feeling keeps up.

Kiddo chilling with a classmate over a mutual love of trains. 





Thursday, February 16, 2017

"Well maybe we can do something about that."

I don't want to keep writing about this current administration but dammit Trump, you are NOT making this easy. I live a pretty stressed out life to begin with, so folks who are complaining about the current state of affairs as being too much I kind of snicker at them. Our lives has been in a constant state of "Oh my god! What's the next fire I have to put out?" since the day "autism" first was mentioned to us.

Yes, I won't lie. I'm not feeling confident where things are going.  Things were kind of "meh" with autism and Obama.  Things now are kind of at a "WTF?!?!" level for me and this guy.  All I keep hearing those is to wait and see, which is HILARIOUS to say to an autism family.  We do not have the luxury of "wait and see".  I also keep hearing to give it a chance.  Can you hear the side eye I am giving that statement?

But then he has to go have a meeting with Betsy DeVos and a bunch of educators.  It's one of those PR things where it's less about what's being said and more about taking pictures and getting sound bites for the media.  All presidents do this.  All the folks around the table are introducing themselves and he gets to Jane Quenneville, who is a principal of a Virginia public school specializing in special education and mostly, autism.  He decides he needs to ask more about autism. Okay Donnie,  You have my attention.  If you want to watch the video clip, check it out here. Trump/Education meeting.

Okay, he's asking about the increasing rates of autism.  Yes, that is a good question to ask.  What I have a problem with is actually a couple of things. Let me make a list. Blog readers love them some lists.

1)"It's a really horrible thing to watch." Yeah, Hi Donnie. Is my Kiddo a "horrible thing"? I don't think so.  You may not have meant it like that but DUDE, that is exactly how it came off.  Once again, let's play the "Autism is a great big scary monster that we need to avoid at all costs.!" card.  The problem with that thinking is how in the hell do you think we can get the rest of the world to accept our loved ones who have autism if we accept this kind of thinking? So yeah, I call you out on that DOOM and GLOOM talk because it does not help.

2) Once again who is being asked about autism? Not an actual autistic person. Call me silly but I would think if you would want to know MORE about a topic, that would be a good place to start. While I can appreciate an educator with actual experience in the field, it seems to me our boy Donnie is missing a step here.  Perhaps if he talked to an autistic adult or two, he would realize that referring to autism as a horrible thing to watch is kind of insulting to autistic people.

3) He ends the exchange with "Well maybe we can do something about that."  What?  What exactly are you going to do?  This is such a BS line I could fertilize my lawn with it.  Again, I get it. This is one of those photo ops that presidents do but give me a break. Is this suppose to be the sentence where I am suppose to fall to my knees in gratitude? Cause I'm sorry. I need MORE details than that.

4) Will the government ever realize that these autistic kids of ours do this outrageous thing called "growing up"?  Yes, spoiler alert Donnie!  All these kids that you are trying to show concern for are going to become adults.  I know! Shocking! In fact, many of autistic adults NOW are under or unemployed.  Many depend on Social Security and Medicaid just to get by and it's still not enough.  You want to something to do about that?  How about addressing that issue!?!?

He may be worried about the increasing autism rates. I'm more worried we once again have a president who doesn't have a freaking clue about an entire population that lives in this country.  Stop spinning the topic of autism for your sound bites and actually DO something!

Till then, no fries for you Donnie.  No fries for you.

Here's another thought. A little less tweeting. Less screen time at night. You'll sleep better