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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."