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.

Sunday, February 5, 2017

Services are as plenty as unicorns.

If you are new to autism, I have a bubble to burst.

SPOILER ALERT:  There are no wealth of services to help autism families.  I am not tripping over free stuff to help my kid.

EXTRA BONUS SPOILER ALERT: The older your autistic kid gets, the less there is out there for them.  What's exactly is less than already not that much? I was never very good at math.  Hit me up with that term if you know it.  I lost interest when that math teacher of mine was always looking for "X". (Give it up, Teacher. If "X" wanted you around, you would know it. Stalker.)

SUPER DUPER BIGLY SPOILER ALERT: There are many fine people that do work in schools and social services for our kids and I'm pretty sure they don't even realize just how little there is.  I really hope this is the case because I can't imagine working in a field that has that little to offer and KNOWING that there's often jack shit for a family.  (If you do, props to you. I'm in awe you go and do your job anyway.)

So if you have been following our story, Kiddo started at our district's middle school this fall and it was an utter clusterfuck. It was a glorified babysitting service and he made it be known LOUD and CLEAR that he was not having that. They didn't know what to do with him and so we left.  We are now in a school where they are actually challenging him academically and socially.  So far, it's been a good situation.

But we are still dealing with leftovers from the school district.  Before leaving, our caseworker helped us sign up for Perform Care, which is program in New Jersey.  It was SUPPOSE to help us get in house behavior therapy and some respite for us.  That process started in November.  It took till the last week of January to actually get a therapist in here. Yes, the wheels of that service turn slowly.  Respite? Hahahahahhaa! Like that will even happen in my lifetime.

Fast forward to now and I have a completely different Kiddo on my hands.  His anxiety isn't as bad.  What I needed then, I don't now. Plus even if I still did have a super anxious Kiddo, I still didn't get the BCBA that I needed.  I got a social worker.  A very nice social worker who my son very much likes but it's not what he needs.  If my son had a different type of functioning level, maybe this would have worked.  However, he does not. She's limited on what she can do with him and pretty much every thing she had in her arsenal, we've been there, done that, and made out the sticker chart.  Even she this week was like "Yeah, umm, I'm going to ask for BCBA to come in." cause she's got nothing.

I go to talk to my caseworker who keeps referring to a form I filled out months ago and I keep repeating like my own autism script of "But this isn't the kid he is now.".  This agency keeps referring that I need to have support too. Great, I get that but even the supports are for newbs!  He offered a family support person (kind of like a mentor) to me before and brought it up again.  This is a woman that told me she would explain things like "What's an IEP?"  Ummm, dude. Kiddo is 12.  Catch up. Kiddo's social worker gave me a list of blogs to follow.  I then had to come clean with who I am and how I have my own blog.  I appreciated the effort of what they are offering but to an Autism OG we need something past "Autism 101", ya dig?  Yeah, thanks for telling me about groups like Autism Speaks. I've written for them. Next!

The thing that is going to support me the most now is to get Kiddo what he needs.  Like what about getting a behavior therapist to come to my house to witness the utter magic that is "WTF Wednesday"? I get it. I'll need someone to come early in the morning to see it. I'm willing to make them coffee. Heck,I'll buy named brand frozen waffles for them. I'll even gussy myself up by putting on real pants and a bra.

And are there no college kids who are trying to get some field experience to pad up the old resume for when they graduate that could use a job as a respite worker in the state of New Jersey? I find that hard to believe as someone who was once a psychology major and saw those job offer notices on the department bulletin board all the time.   This is what I asked for months ago. It's February.  Still, nada. Nothing.

What I keep finding is a lot of sociology double speak. A lot of meetings, phone calls, and forms.  Not a lot of actual practice. This is how those folks who do stay on waiting list eventually get what they need.  Cause folks like me say one day "Fuck it." and just walk away from this less than bare minimum.  I'm getting frustrated and pissed off. If I can't get what I need for him now, what's it going to be like in coming years? (YUGE SPOILER ALERT: AWFUL!)

Oh I know, this is when someone will tell me about the large amount of charities and churches that maybe, just maybe, might help my Kiddo. Cause you know, it's not like he's entitled to any governmental service like every other citizen in this country. I mean, that's just silly. We'll just have to rely on the kindness of strangers reaching into their pockets that day. That's a solid plan!  What could possibly go wrong?

If actual services were as plentiful as Legos we would be set!