Thursday, September 26, 2013

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. 

Thursday, September 19, 2013

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. :-) 

Thursday, September 12, 2013

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. :-)

Wednesday, September 4, 2013

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?