Autism, we're not the only ones tired.

It was a pretty typical Monday night for the kiddo and I.  Daddy Fry was having a late evening at work.  He had just finished a full day of school followed by an hour of speech therapy. We swung by the local pizza joint for a slice because if Daddy ain't home, Mama sure ain't cooking.  Plus it's his main motivator for "good listening" in speech. We're at our kitchen table munching in silence when I see him do it.  The move that almost breaks my heart. He puts down the slice with one hand while plopping his other arm on the table and slumps his forehead into his hand.  Followed by a sigh that I swear her channeled from his great grandmother. The kiddo was wiped out.

It kind of hit me like a ton of bricks and I has to catch my breath not to cry.  He didn't even have a "bad" day. It was a pretty good one actually but it also pretty damn busy.  Now that school is back to full time and we're going hung ho with therapies out the wazoo. Up since "Dark Thirty". He is done.  The wall has been hit and I worry because we only just started this schedule two and a half weeks ago.  

Then I get to thinking it's not just getting back to this current schedule that may be wearing him out.  The kiddo has been in some sort of therapy since he was barely 22 months old. He's 9 now.  That's a long freaking time.  Is he worn out?  Is he bored?  I used to really panic a few years ago when we would have to get a new therapist here and there.  Mainly because they are all women and predictably they all get pregnant and go on what we call "The Baby Vacation". Now I'm thinking that is a good thing. Maybe a change in routine and person and their own bag of tricks might help keep my kiddo engaged. Give him a second wind.  The kiddo has had four different OT's go off to have babies. I'm beginning to think he is a fertility idol and almost want to warn his newest one to use a back up method of contraceptive if she's not planning on a family right now. As she just only replaced the previous OT who went to go selfishly have a baby, I would like her to stick around a little while longer.  But hey, if switching them up now and then perks the kiddo up a bit, I guess she better start knitting booties.

I can't fix the problem tonight.  Or find the perfect solution.  All I know to do is go into Mom Mode and make sure the rest of the night is chill.  We get changed into pajamas and hop on the couch to watch the same three DVDs we watch every night.  The ones where we only watch certain scenes and recite the lines of course.  I then get him up in bed and snuggle up next to him.  I know I'll probably drift off and in an hour wake up completely confused.  Where am I am and why am I sharing a twin size bed with someone? Oh wait. I'm not in college. This is my son's room, not my dorm room.  I will then go to my room and within minutes, he'll probably follow me.  Yep, back into the routine and with a small elbow in my side to remind me he's worn out too. 

Hell hath no fury.

"Autism moms ruin everything"

That was the phrase that lead someone to my blog a few weeks ago.  Did you know we bloggers can find stuff like that out?  I suppose it's so we can see what kind of viral reach we have going on.  Sometimes the phrases are kind of amusing. I still chuckle at the one asking "what kind of cocktail for after an IEP". (Never did find that answer out.  Leave your suggestions in the comments if you have a good recipe)  This one however, stuck in my craw.  (By the way, what is a craw and where the heck is it that things get stuck in it.  Again, leave your answer in the comments.) The annoying part is I'm not sure what it is I or any other autism mom is ruining for everyone else.  It's going to be a case of suck it up Buttercup for that random person.  I got enough going on.  To bad so sad you don't like me but I got plenty who do so, (Say it with me now with Jersey attitude) "You do you!" 

I've been doing this a year, let's just say the skin is a little thicker to random stuff like that and I can laugh it off pretty well knowing it will eventually make excellent blog fodder.  Thanks random angry stranger! This past week however stuff got slightly more personal for me with what I write and how people respond to it.  I am Facebook friends with a special education teacher.  She sent me a very nice message the other day telling me how she's been enjoying the blog and the companion Facebook page for it.  I was pleased to hear it. It's nice to see folks in the field reading it.  She did bring up a few points that I have been mulling around in my noggin ever since.  Why are we (us autism parents) kind of well so freaking angry all the time? We seem to be constantly up and ready for a fight.  Always on the defense.  What has brought us there?  She asked me to explain my perspective to her as she wanted to understand more my position as a parent.  Where was all this coming from?  She also knows I come from a place of not just a parent but as someone that used to work in a special needs school for kids with autism.  I've done both sides of the parent teacher meeting table.  She needed some insight.  She wants parents to know she's on their side.

So what gives?  Why are we all so pissed off and ruining everything like that random stranger implied? Why is my teacher friend so baffled by our  cynical outlook. Well I don't know about you all but I got a list.  Of course I got a list. I'm Autism Mom.  We love our effing lists.

1) I am TIRED!  For years my son has not slept through the night.  Some evenings are better than others but to many are just when he's going on his second, third and fourth wind.  Of course I think of my friend.  She works a full time job and then goes home to her home and family to care for.  I bet she's tired too. Or the kiddo's former teacher. She taught my kiddo all day only to go home to her own autistic kiddo. That's a whole lot of autism.  We all come to the IEP table pretty worn out.

2) Paperwork and testing blows.  My kiddo is 9 and I'm still filling out forms. Mounds of paperwork and god damn I am sick of writing out his APGAR score still.  Like that makes a tiny bit of difference now?  Sometimes it just seems like an incredible amount of busy work to have all this. I especially feel slapped in the face when it's clear that it wasn't read despite me taking the time to answer all the questions. (I'm looking at you Doctors/Insurance Companies) Again, I can't help but remember writing out reports to parents on how their kids were doing with their vocational training and hearing nothing back from them. So then I feel for the teachers who are the ones being mandated to ask these questions and do these certain tests. They know some of those questions suck too and yet they still got to ask them. Getting a new and improved test into this system?  Oh Lordy good luck with that. Wheels of education grind slow.  That's got to stick in their craw too. (Again where the Hell is this craw?)

3) Yes, teachers do only get a taste of our kids behaviors.  They do get to punch out and be done for the day.  Weekends and vacations off.  When I didn't have a kiddo, it was really easy to leave my job at my desk.  Except those times I got hurt on the job.  I have been kicked, punched, slapped, and bit.  Things thrown at me.  Property of mine destroyed in front of me.  I had to take a class every year to learn the latest physical restraint Du jour.  I think I was trained in four different kinds before I stopped working in the field.  (The plus side of this is I always did feel prepared if I was by myself at night in a parking lot) I suspect this has happened to a lot of teachers too.  They get the glory of all this while making a pretty pathetic paycheck to boot.  I'm not saying their martyrs here but let's face it.  They ain't doing this for the money either. Lets give them credit.  They could leave.  Instead they choose to show up at work the next day like nothing ever happened and teach again.

4) Money. We're broke.  They're broke and schools seem to be the last on every body's list for funding.  We fight for the services because we want what is best for our kids. They're stuck in districts that don't have it to give.  Another reason everyone comes kind of pissed off at the IEP table.  Who's gonna win that round because it really is any body's guess. Therapists and doctors tell parents to get such and such services.  Insurance won't pay. They claim the schools will do it.  The schools can't always though. This vicious cycle is stuck on repeat.  Lots of things getting stuck in various people's craws.  Craws epidemic ensues.  Someone starts a Facebook page on Craw Stucking Awareness.

My point is, we BOTH have to remember that the other is not the enemy.  We have to take a deep breath and remember why we are there.  Now I know there are many of you right now who are ready to write a gospel according to your experience in retort.  Just take a moment before you do.  I'm not saying go in with guns blazing but aware.  I'm asking teachers to realize the utter drain we parents feel on a daily basis.  You went to school for this stuff.  We didn't.  I know no parent gets handed a guidebook but we really get tossed through a loop into this special needs world.  So be patient when you have to explain stuff to us a second or third time.  It's your day at the office but it's our kid's life.  I promise I won't go into it thinking you're all out to get me.  I know you get paid a crap salary and I'm going to give you a nice gift at the holidays and the end of the year.  I promise it won't be another coffee mug because I know you will probably collect a good thirty of them over your teaching career.  Just know I'm in it for my kid and I'm "that parent".  I'm involved because I want better for my kid.

I'll even share a side of fries with ya. :-) 

Dear Me from 2006

Oh girl, you really haven't a clue what's in store for you.  You thought by working in the field of autism and special needs that you were trained for what's ahead.  Not even close.  Not by a mile.  You see, when it's YOUR kiddo's name on the paperwork (and there will be mounds of paperwork) and all the reams of data of what he can or cannot do in front of you, it's going to slap you so hard it makes you feel paralyzed with fear.  Cause you used to write paperwork like that about somebody kiddo.  You didn't have your heart tied to it.  You wrote your report, goals, parent note home etc, filed the triplicate forms to the right parties and swiped out your time card at the end of the day.   It's gonna be okay though honey.  You see, your kiddo is gonna prove a lot of those tests and evaluations wrong.  You know all those classes you took in college on testing and evaluations, you're gonna see first hand they really suck.  There are a billion special kiddos in the world.  How are you gonna put them all in the same box with the same test? Ridiculous right?

Really the test scores are going to look like a cake walk compared to how others in your life react to your son and his autism diagnosis.  Betcha didn't know when you shared with someone you cared about your worry and your concerns about your son's issues that they could make it all about them.  Honey, it's gonna knock you sideways to see how with autism in your life, you will loose some people.  Some were friends and some even family.  Don't worry though.  This really does just weed out the ones that really didn't need to be there anymore.  Plus the bonus is you will make room for the new ones.   The really awesome, fantastic, oh my god I want to buy a compound and take on all these other gals as Sister Wives, autism moms.  Folks who just nod their heads and get "it".  So yeah, Thanks Autism.  I've met some of the coolest people because of you.

He's going to do stuff you are convinced now he will never do.  I'm talking big huge stuff here.  Remember how you cried the other day that he would never say "I love you." or anything at all.  Last December, he got up in front of an auditorium packed with people and introduced a song.  Not only that, you heard him singing it from the second to back row where you were hiding from him as to not distract him.  Oh and the toilet training, he did it! I KNOW!  Heads up, you're still gonna have to remind him to go sometimes and it's going to take a long time to get "number two" down but he'll do it.  Here I'm gonna rock your world when I tell you this one.  Not only will handle all bathroom doings on his own, he'll tackle a public restroom on his own without you.  That's right, you're baby boy is going to walk right into a men's room before you can grab him and just go do his thing.  While you are standing outside freaking out about possible kidnappers and pedophiles in there, the only thing that's really going to frighten him is the automatic hand dryer.  He did it.  He survived.  You'll be amazed and still frightened for him to do it again but you'll let him because that's what we're working this hard to do.

Yeah, you are going to still be so freaking tired. Sleep and autism.   They really don't go hand in hand.  You will spend a lot of money on coffee and melatonin.   What else can I say?  Somehow you just get used to it.  You won't like it any but you'll just accept your fate and deal with it.

You're still going to have pity parties.  They'll be shorter though because you're going to learn that they don't really help much in the long scheme of things.  Besides, you got a blog to write. Nobody is going to want to read another depressing blog.  That's right sport, you're going to be cracking wise about autism.  There are going to still be days that suck ass but you will learn that it's way more important to focus on the funny.  That's what is going to get you through this.  Snark on Mama. Sarcasm saves Sanity.

Also stock up on wine.  Lots of wine.  And Advil.

Love me. :-)

Sometimes it's not Autism

Every waking minute of my day is spent going over the kiddo's behavior with a fine tooth comb.  It's so hard to turn off that part of my brain and just enjoy him sometimes.   I haven't manged to yet.  Best I have done at times is hit the "mute" button.  Hey, it's a start.

Not every move he makes is based on his autism.  Sometimes he's motivated for more independence.  Sometimes he's just being a pain in the ass.  (GASP! Clutches Pearls!) Sometimes he is just questioning the rules.  Sometimes he is push the boundaries.  Sometimes he's just nine freaking years old. I'm so focused on advocating for awareness and acceptance for my son's autism that I completely forget he is so much more than just a medical diagnosis on a file. 

Case in point, the recent development of his inability to walk under a door frame or arch way without having to take a running leap and jump up to slap it with his hand.   One might say his desire to do this every time is his autism.  Nope, I can't agree.  He's just reminding me of every guy I went to high school and college with.  Hell, my husband still does this from time to time.  (Seriously guys, what's with this?  I don't get this at all.  Is it because it's there?  Really, fill me in here) This is when it's not autism. 

There now seems to be a expanding interest in music.  I'm not talking your standard kiddie stuff, although those do get played from time to time. (Hey we still have an autism house here.  No toy/ thing ever truly goes away) He's really getting into all kinds of music.  I'm finding him more and more just taking the iPad and going into his room or on the couch to listen to music and or watch videos (did you know they still make them? I know!) on YouTube.   Kind of like what all tweens/teens like to do.  Is he closing himself off from the world? Autism shutting everyone out?  Well he's just doing what I did every single day and still do from time to time.  Just chilling out with a favorite artist.  So is it autism or just being a tween.  I'm thinking it's not just autism.  I'm thinking he's got full ass days full of therapy and school.  If twenty minutes of listening to Katy Perry is going to chill him out, by all means kiddo. 

Then we got the eating thing.  Damn is that getting better.  Now I had every mom tell me "when he's hungry he'll eat"  All autism parents are laughing now because we all know that never happens.  Not to us.  Or "when he's older, he'll eat better."  Yeah I'm guessing you didn't have to meet with a therapist and have three or four sessions dedicated to learning how to eat a sandwich.  So yeah, we did do eating therapy twice now.   The first time it didn't really take at all.  We backed off and took it up again.  Maybe now at this age, he was ready.  So maybe some of those parents were right about the older part but we also still have to teach him how to approach new foods and textures.   I'm starting to see now though, just some foods he does not like.  While part of me wonders if I should ask his therapist for more help, the other part wonders "well maybe he just doesn't like it?" There are foods that I don't like.  Doesn't his opinion matter?  If he never eats a piece of steak, is that a tragedy?  The world won't end if he doesn't like peanut butter and jelly sandwiches. 

Sometimes it's not Autism.  If it was always autism well everyone would be right?  Why is so hard to turn off that autism filter I view everything with? 

And we're live!

These words still ring in my head from a year ago today when I first wrote about my life with the kiddo for the local radio station.  I was asked to write something about what a day in the world of our autism looked like.  I literally wrote it in about an hour while waiting for the kiddo to finish OT.  I then sent it off to my pal Laurie Cataldo over at 94.3 WJLK in an email and she replied back with this, "And we're live!".  POOF!  Up on the radio stations website and that my fries was the kick in the pants into the world of blogging.  When people ask me why or how I started blogging, I always tell them "By accident."because I never thought it would be more than that.

Oh do you want to read that first post?  It's pretty funny.  Not to brag or nothing but I was proud of it.  Go on!  Read it.  I'll wait. :-)  (http://943thepoint.com/a-day-in-the-life-of-an-autism-parent/)

A year later I sit and now I got 15 thousand folks who I call "fries" sitting with me.  Plus, somehow I got renamed "Mama Fry".  I don't know how that happen but I like it.  Nothing really could prep me for both the good and bad of it but like autism, I guess you could say, it's kind of the same.  One day you're just doing your thing, living life, slightly worried about your kid and then some doctor, therapist, loved one, teacher etc says "autism" to you "and we're live" happens to you.  Your perspective shifts forever.  Once you are in it there is no getting out of it.  Much like the mafia.  You may fight it at first but eventually you learn to "leave the gun and take the cannoli".

As you wade through it, you start to see there are turf wars going on in autism.  Parent Advocate vs. Self Advocate.  GFCF diets vs. blogs named after the only food your kiddo might eat. (Actually this is all a farce.  The kiddo hates them but Autism with a side of Kale didn't have the same ring to it) You meet the foot soldiers in the Vaccines/No Vaccines Army and watch the "shots" fly over well, shots! (Ha! I tell ya I'm on fire today.)  And let's not get started on to medicate or not to medicate debate, we'll be here all damn day and I got to take the boy out for new sneakers later.  You think you're down with the rest of your peeps, wearing the right autism blue gang color but then you learn that's not really for all of autism as much as it is for Autism Speaks and a lot of people have big issues with them.  Eventually you might have a moment of thinking "I just want to learn how to get my kid to poop on the toilet! I'm too sleep deprived to read a 40 paragraph blog on whether I should say "child with autism or autistic"!!!!  We're live!! We got to do all the right things now!"

All I can say, chill sport.  It's gonna be okay.  It's not gonna be what you thought it was but it's gonna be alright.  The longer you are "live", the more rehearsed you are, the more you can manage.  Some stuff is going to still screw you up.  You're going to encounter something that reminds you that you are "live" in a performance you didn't get a script for and it will bring you to your knees.  You'll have your pity party and you'll move on. (For example, last night I hid in my laundry room when I thought our AC was broken and had a five minute ugly cry.)  You don't have a choice.  You have no understudy.  You'll learn to improv really well with what life throws at you.  You'll know when to edit things out of your life that simply don't serve their roles anymore. 

Going "live" this time last year was scary and getting that autism diagnosis is too.  Just remember, much like the mafia, other folks taking this journey are loyal as HELL to others doing the same.  They know the script.  I mean of course they do.  There's a good chance their kid has been scripting it all day like my kid.  Even when they live over in a completely different turf, they still got our backs.

A year has come and gone but we're still live and I got to get ready because I promised the kiddo lunch.  Guess what we're eating? :-) 

Is she really going out with him?

The husband has had this week off from work.  He's done his very best to play court jester and keep the lad entertained at all times.  Honestly it's like the boy is shooting bullets at his feet and yelling "Dance for me!  Dance!"  Daddy Fry really works his ass off harder on a week off from work then when he's at work.  In fact, come Monday, he's going to be leaving this house with a giant relaxed smile on his face knowing he can finally slow down his pace at the office.  I wouldn't even be surprised if on Sunday he goes into the office on the guise of "catching up".  That's okay by me.  I have a date!

Like most gobs of time off or weekends, the kiddo is very concerned about his schedule.  It's not a case of just wanting to know what's coming next.  He NEEDS to know in order to just maintain any sort of level of calm.  I find on weeks when Daddy is off too, the constant worry about the next activity came become even worse.  Daddy being home is just not the norm to him.  No matter what. So we plan out the day from the moment we wake up to the moment he's going to bed.  Sometimes I resent having to do that. I'm not going to lie.  I miss those child free days of my 20's where I was actually kind of bored on a weekend.  Or the ones where I could just chill out with a good book and take several hours at a mall if I felt the need.  (Back when I had extra cash to spend on something really important like the perfect shade of lip stick)  Other times, I see how content and happy it makes him knowing what's coming.  The day feels more organized and things get done that need to be done.  Because the kiddo ain't gonna let ya forget it. 

This morning he kept pacing around the living room worried about August 25th.  I have to admit, I sighed a little when I heard him start repeating the date.  I knew what he meant.  He wanted to play for tomorrow but Geez, it wasn't even lunch time yet.  Plus, I couldn't think of one solid thing that had to be done that he could focus on.  I closed my eyes and took a deep breath and just thought "How can I talk him down from this?"  I saw the pacing getting faster back and forth.  I knew I had to try and come up with something. 

Me: "What about August 25th kiddo?"

Him: "It's a Sunday!" 

Me: "Yes it is.  August 25th is a Sunday.  What would you like to do that day?"  (yeah I'm sick of coming up with ideas.  Let me throw this planning onto him.  What's the worst he could come up with?  Flight to Paris?  Great! I always wanted to go)

Him: "Planes.  Go see Planes"  (At this point I think he's referring to one of the several places we saw actual planes this week.  It's was a museum madness week.)

Me:" Yep Planes.  You like them.  You want to go see some again?"  (not an impossible task.  We do live by a local small airport.)

Him: "No no no no no.  Go SEE Planes!  Get TWO Tickets and a Popcorn! With Kiddo!"

Did my kid just ask me out to the movies?  He totally did didn't he?  My mouth hit the floor.  Usually this back and forth pacing is just me randomly guessing by tossing out nouns until I get the right one of things he decides to do.  He just planned an event.  He just figure out a way to tell me what he it was he wanted to do.   He got inspired by all those freaking planes we saw all week even though I wondered "Is he even enjoying this?" at times.  He is carrying over the theme!

And even though we have already seen this movie, I turned to him and said "Yes. You wanna take me on a date?  You got it."

And he said "Yes! Sunday Mommy and Kiddo go see a Movie. No Daddy.  Just two tickets and popcorn."

So tomorrow, I will sit through Planes again, gladly.  I'm going to have to bring my wallet though.  My date will probably forget to bring his. :-)  

Opps, my words fell out.

There's song out on the radio (94.3 THE POINT!!! and yes I sang that radio's jingle as I typed it) right now called "Brave" by Sara Bareilles.  I know it's pretty poppy and probably makes me a 12 year old for liking it.  I don't care.  I FREAKING LOVE IT!  Is it possible to have a blogging theme song?  Cause from the first time I heard it that's what I thought it was for me.

"You can be amazing
You can turn a phrase into a weapon or a drug
You can be the outcast
Or be the backlash of somebody’s lack of love
Or you can start speaking up"


Words just make up every single flipping thing.  In this autism house we live in, communication is such a huge part of our lives.  What we meant.  What he understood it as.  What he was able to communicate back to us once the words were out there.  Autism has taught me so much the weight of words.  Trying to explain how I feel to others who I hope either understand what I mean or at least can appreciate what it is I'm trying to say.   There's no font for tone.  I just have to hope I wasn't completely off my rocker when I put it out there.  Let's face it, most of the time it is.  I'm just hoping people just blame that on me being sleep deprived.


"But I wonder what would happen if you
Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave"

I know what happens.  Change.  The more I talk here and on Facebook or Twitter, the more I can organize my thoughts.  I have been able to assess with less panic what it is that needs to be done first.  I'm still overwhelmed but that's what wine and bitching in my blog is for.  It just seems a little more doable.  The more I speak, write or advocate for my kiddo, the natural it seems to be.  It's still hard and there are days where I just sigh and think "Oh Christ I got to explain this blah blah blah to yadda yadda yadda AGAIN?!?!?" but I do it because if I don't "let the words fall out", nothing will change.  Nada.  We'll stay stuck and that doesn't help at all.

"And since your history of silence
Won’t do you any good,
Did you think it would?
Let your words be anything but empty
Why don’t you tell them the truth?"

In my own 'history of silence", I was very closed off about what was going on in our autism home.  That was really dumb.  What was I trying to keep silent?  That he had autism because you spend two minutes with the kiddo, you're gonna know.  There's no real surprise there. Who knows? I certainly don't go looking for trouble but dammit, you bring up my kid, IT IS ON!  The longer time served in this autism army, the more I am ready to jump in when I see one of our own being picked on.  Seriously, have you seen how fast autism parents channel their anger into advocacy online?  We have to remember how fast and how furious our wrath is.  If you are going to hear from us, you will not forget what we say when "the words fall out."  Especially when you folks try to challenge the rights our kids should have.  Honestly, it's like you bringing a knife to a gunfight. We will own you.   I try to remember to make my words pack a punch though.  I don't respond to every bait thrown my way.  Some trolls aren't worth the effort to turn on a computer to write back.  If you hear from me, you will remember it.  Even if we never speak again.

Mostly the song reminds me to try.   Even when I am so tired and cry "What the eff was I thinking?".  Nine times out of ten an activity might bomb but I will still think of that one time it worked for him.  I will remember how glorious it felt and the hope that it brought.  Those other times, well I'll just order another side of fries.