Wednesday, December 21, 2016

Always snowing

A friend of mine on Facebook recently moved from a warm climate to a cold one.  She posted a beautiful picture of her family's new home that was covered in fresh snow.   A friend of hers warned her to make sure to stay home in the snow storm and stay off the roads.  To which another mutual friend who lives in a another pretty snowy state replied:

"If you stopped driving every time it snowed, you'd never leave your house." 

I chuckled when I read it but I also sighed.  This is our life in many ways.  There is always a "snow storm" of some type blowing through this autism house.   While it's easier and sometimes safer to stay home, that does a number on your mind too.  Certainly doesn't do your kid any favors either.

I often find myself wonder "Damn, just how long is this winter gonna be???"  The ten thousand hours days that start anywhere between "Dark Thirty" or "Oh My Fecking God O'Clock".  The events that you have carefully planned that explode in your face because the slightest thing was amiss.  I understand that there will never be a moment where I can just think "There, it's all fixed now." but the last few months have been a constant Blizzard of things for lack of better words.   I get that when we learned  Kiddo had autism that life wouldn't even go back to "normal" and we would have to learn to adjust to the "new normal".

It just seems lately that whenever we adjust to a "new normal" the Kiddo is like "NOPE!  Let's change it up. I don't want you getting soft." I'm guessing puberty hasn't helped with this.  Spending that time in the old school with staff that clearly didn't give a crap about the special needs population.  Switching to a new school, just start getting settled there and then my father dies.  Start to slowly pick up the pieces there and then it's the holidays and all the craziness that comes with it.

This morning was the cherry on top of the shit sundae when he woke up in a pretty good mood only to discover that the Internet was not working.  It was an area wide outage. There was nothing we could do other than offer our phones and our data plans to him for comfort.  But this is a Kiddo who wanted his iPad to work and no other devices were acceptable.  So we just kept hustling.  A long walk with the dogs.  A long foot and hand massage with lotion for input.  Tons and tons of every redirection for as long as we could.  The Internet finally started working again but the meltdown lingered.  Like any good snow storm, it left a good mess in its wake.   The day was already ruined before it even begun and calling for a "snow day" wasn't even an option.

The bus pulls up and I warn them that he's in a mood.  The driver just sighs and says "Wednesdays" cause even he knows that there will be a storm every Wednesday.  I promise to call the BCBA and teacher at school to see if they can give them some help on the bus and the driver agrees. It's a safety issue. It has to be addressed.  They pull away and I almost make it back to the front door before the tears start.

It would be so easy to just stay home and wallow but I got some shoveling to do.  There's really no choice here.   Mama Fry is gonna need an industrial snow plow at this rate.

My backyard a few years ago. Even my dogs were like "Oh Hell no. You better go make me a potty path." 

Tuesday, December 13, 2016

I'll be on my way

"Well here it is , my time has come
Won't be long I'll be moving on
I can't complain, I've had my day
Now I'll be on my way
And all the good times that we've had
Much more good than bad
What more can I say?
Now I'll be on my way"

"I'll Be On My Way" by The Sawdoctors

After a long battle with various auto immune disorders like Scleroderma and Sjogren's, my father passed away. It wasn't exactly expected. My Dad had sixteen separate hospital stays due to various complications from them.  A few of these stays were pretty touch and go but he always bounced back. In some ways I had made my peace with idea of his death years ago.  So it was a bit of a shock to have it happen after a pretty good day for him.

My last words to my father at the hospital were "I gotta go and call the school the district and give them Hell again." and he replied with a smile "Of course" because my Dad knew that is exactly what I was going to do. Next thing I knew I was calling a funeral home to make arrangements for him while trying make sure I can get the hours we need so Kiddo will be in school because no matter what, that routine has to stay the course.  Especially after the last three months we have had with switching schools.  If there is one priority here, it's Kiddo and I know my father is somewhere nodding his head in agreement.  What more can I say? I know my Kiddo's limits. Sitting through a funeral service isn't one of them.  He'll go to the "afters". Which is what we Irish folks like to do after the burial.   Oh and get this, when is this all going down?  On a Wednesday because of course it would.

"Don't be sad now when I'm gone
Take your time while you're still young
In the warm sunshine make hay
Now I'll be on my way"

Lots of people make a point of asking me how is my son handling this.  Does he understand? The truth is I'm not really sure.  My husband took the reigns on explaining what happened while I was busy dealing with what happened.  By the time I returned, Kiddo informed in a matter of fact fashion that "Papa was in People Heaven."  and further elaborated that People Heaven was right next door to Dog Heaven where our old dogs that has since passed on now live. Since it's happened he's been scripting all that a lot.  Sometimes it's nice to hear. Sometimes it stings. I suspect like most things my son does or says, I'll just get used to it. Kids are far from quiet.  It will just become part of the background as all these things do.  But to ask me how he is? Well I'm going to say kind of confused.  That's what I'm feeling too so it's good we're going with a theme.

Where I'm going , I don't know
But I'm heading off in sun
Rain hail or snow
In the yard I hear the children play
Now I'll be on my way" 

My Dad wasn't your typical kind of guy.  Didn't care for sports, didn't go fishing or was BBQ master.  None of the usual "Dad stuff".  Without a doubt, my Dad was a member of #TeamQuirky. He always just did his thing. Mainly which was an extreme fascination and love of aviation.  While many other father's played "Couch Quarterback" on Sundays during football season, my father climbed into gliders.  Which happened to be airplanes that don't have engines.  They are towed up by another plane by a cord which eventually gets dropped and then you just soar around the clouds.  Sounds a bit nuts, doesn't it?  But trust me, it was fun.  Many times as a kid he took me and or my brother with him.  Now that I'm a parent I think "You took your minor children in a plane with no engine!?!?!"  But I'm so glad that he did.

My father wasn't a "talker" but what he did say was always insightful, witty, and with a sprinkle of very dry humor.  Even if he didn't always get what I was doing, he still supported it.  He was happy to see his love of all things planes passed on to the Kiddo, who can clock any helicopter coming over the house before anyone else can hear it ala Radar O'Reilly from MASH.  I like to think that my Dad is in his own version of Heaven. A huge library filled with every book on World War Two that was ever printed and a nice Lazy Boy recliner to sit in to read them all with a stereo that plays nonstop Johnny Cash and Broadway show tunes. What more can I say? The man had eclectic taste. ;-)

I'm not sure what's next other than we'll get through it.  Autism has taught me that much.

"I have no fear of what's to come
My faith in better days is strong
Somewhere warm and safe to stay
Now I'll be on my way" 

My Dad and my Uncle J at my parent's wedding reception where they kidnapped rolling bar cart from the bartender.  Can we all just agree rolling bars are a thing that needs to come back into fashion.  Especially for IEP meetings and Parent/Teacher conferences. #TeamQuirky, this is what would make America great again.  Just sayin'. 

Tuesday, December 6, 2016

Trying to tackle WTF Wednesday

If you are new to this blog, you may not be aware of the phenomenon that is "WTF Wednesdays". In a nutshell, my Kiddo pretty much can't handle this day.  I've written about it before here WTF Wednesdays.  He hates it more than Garfield hates a Monday and we only think we know why. Allow me to explain.

The only one constant I can see is that at the end of the day he has his beloved music therapy appointment.  No matter how bad a day it has been, nothing makes that Kiddo happier than going to jam with Mr. "J".  All worries at left at the doorstep. He is truly in his happy place.  That Kiddo of mine sings his lungs out like a drunk after last call on a karaoke night. It's pretty delightful to listen to him express himself.

But the concept of time and waiting, this is not his strong suit.  To quote my boy, "Waiting is hard to wait."  I don't blame ya Kiddo.  Waiting is hard to wait.  I love this quote so much I might needlepoint it.  Pffft. Who am I kidding? I can't needlepoint. Maybe I'll meme it instead.

And because of this, his thinking is as followed. (Or so I imagine.) "I do not like having to wait till 4 PM for my music time.  Ergo, I will trying to rush through the day to get to the thing I want and woe to anyone that tries to slow me and time down. If I am miserable having to wait, I will make sure everyone joins me in that feeling."  Give or take.  It's subject to interpretation and my interpretation is if he ain't happy, ain't nobody gonna be happy.

This is coupled with autism, anxiety, and OCD with checking off all the things on the schedule, Holy crap, what a clusterfuck.  In a perfect world, he would go to school, high five teacher, yell "Peace Out Bitches!" and hop right back on the bus to take him home so I could drive him to music.  But that's not how these things work. I can pull a lot of accommodations out of my ass, bending the rules of time and space isn't one of them.  He has to learn to wait but he also has a long history of melting down on Wednesdays. It's just not worth it anymore. It's not fair to him, me, or anyone else's ear drums in a fifty feet radius of the Kiddo.

So what's a gal to do? Well right now we are going to try to disassociate the activity from the day.  That means changing the time he goes to a random series of appointment days.  Mr. "J" is being more than helpful and we're wiggling those things around so we can shake this pattern.

I'm also not telling him when these appointments will be scheduled. It's just gonna be BAM! Music time! Non scheduled events in an autism house.  Goes against everything ever said to us to do but hey, I'm out of ideas here. I deleted all events from his calendar app on iPad and added another passcode to my phone so he can't break into mine to see what events are coming up.

I'm not sure if it's going to work.  I mean, he has other weekly appointments that he doesn't obsess on as much.  I guess the level of fixation shows the high value it has in his mind.  I'm not sure.  Sorry Magic Speech Therapist who graduated from Hogwarts. Mr. "J" never made the Kiddo try to eat oatmeal like you did. I think that lost you a star on your review. ;-)

It's easy enough to switch an appointment but there are other things that just can't be switched that he's always going to obsess on.  Just last Friday was my husband's birthday. It was "SCHOOL! DADDY! CAKE!" all day till we got that cake. What am I suppose to do? Tell my husband or myself or a national holiday like Christmas "Sorry, it's canceled. Not this year. We'll let you know when you can come round." I guess there will just be certain days and times we can't move and we'll just have to deal with it.  Luckily for all of us it seems like he's in a much better place for school when his teacher gets that.

He seemed rather delighted and surprised when I sprung the appointment on him yesterday after school.  This is where it gets tricky though. Does he fully understand that was this week's appointment? That this wasn't an extra he was getting.  (As the kids say, my Kiddo is Extra AF!) Will he now think Monday is the now the new day?  Will he completely lose his shit come Wednesday anyway?  There's just no way to fully know until it happens.

Stay tuned to find out!

I made myself a social story.