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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  



Monday, February 13, 2017

"Those were the days."

A friend of mine on Facebook shared a meme that says "Growing up in an Irish household there was always two choices for dinner. Take it or Leave it." I suspect this is where I'm suppose to write "LOL" in the comment box.  Part of me agrees with the attitude in a way. My mom aka Granny Fry, didn't put up with a lot shenanigans.  However, she did know when to pick her battles. The likelihood of me ever eating fish? None. She'd serve me something else. Would pizza ever pass my brother's lips? Not a chance. She'd boil up a hot dog for him.

And despite both she and my Dad being the children of fresh off the boat Irish immigrants, I am pretty sure my father would have filed for divorced had she ever tried to boil cabbage in our home. (Kind of happy that was a rule now that I think about it. Have you smelled that? It's like death meets hot garbage.)

This take it or leave it mentality doesn't work in our lives.  Despite it being so black and white, which is funny because in most cases we dig some serious black and white type choices.  (And black and white cookies but I digress.)

I'm not driving myself batty to get my kiddo to eat the same dinner as I am because of a mind set from forty years ago.  We'll set our own house rules thank you very much. Can we stop romanticizing the past as some sort of end all and be all of how to parent?  We used to NOT put kids in car seats.  Want to take it or leave it on that too?  Don't get me wrong. I loved long car rides home at night in my parents station wagon cargo area. My brother and I would pretend to be in the Millennium Falcon and shooting at all the other cars headlights till we past out and then just rolled around all willy nilly on the Garden State Parkway.

My brother was always Han.  I thought I was Princess Leia but I'm pretty sure he thought I was a Wookie. 



Anyway, would I do that now?  HELL NO. So maybe past ideas aren't always the best ideas.  I mean, I would love to draw on the experience of my parents but they also thought that buying a BETA VCR instead of a VHS one was a good idea.  Also, they never raised an autistic kid.  So I really can't turn to what they did and that's okay.

This goes right along with that other "Copy and Paste" status update I see folks sharing of "My curfew was when the street lights went on." and all that nostalgia jazz. No, I don't think the Kiddo has less of a childhood because I don't allow him to roam the neighborhood without supervision.  I simply cannot allow him to do that due the nature of his disability. Happy to hoover right over him if it keeps him alive.  Yeah, I know. I'm fussy like that.

And my personal favorite is the sheer irony of folks posting about kids using iPhones and tablets by using THEIR OWN  iPhones or tables.  "We had outside!", they cried as they scroll on their smartphones, inside their homes.  Bitch please, your parents happily plopped you down in front of the Atari 2600 many a day.  Don't act like you grew up on zero technology.  (Video pinball rocked!)

Folks get old and see folks younger than them doing stuff differently. This is a tale as old as time. I'm not going to take it personally when they give me grief but I'm not going to stay quiet about it either.  I get it.  A guy just won an election based on this thinking of the past was great and we can make things great again.  I'm just not so sure what he means by that.

The new stuff becomes someone else's old stuff soon enough though. Folks thought Prohibition was a good idea once.  I'm pretty sure we wouldn't be so hot to revisit that.  (Parents and teachers everywhere would revolt.)



I'm not sure where I'm going with this other than I am just going to enjoy my moment of complaining about people complaining.  It's what Archie Bunker would have wanted.