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Tuesday, August 26, 2014

I have the best intentions.

"Oh my god! What if he reads this?  How can you write about your son like this?  Have you no respect for his privacy?"

Actually I do, you dirty pirate hooker.  Ever see his name or his picture on here?  Yeah, didn't think so.  So you can go have a seat over on the wench bench because I don't want to hear it. Get comfy. I have a few things to say about all this autism stuff.  You see, I have the best intentions with how I parent my kiddo and that's good enough for me.

I have fantasies of my son finding this blog and being pissed.  Rip roaring mad at me.  Yes, I would love him to be angry about it.  I would love him to feel embarrassed that I have talked about his poop.  Right now though, where he is, I'm not sure that he's ever going to understand or care what's being talked about in this blog.  Frankly if he did, I'd be freaking thrilled.  It would mean he is doing pretty damn well in his life.   So yeah, I'll take that risk.  This isn't about me talking about him behind his back.  This is about sharing our story so others can see what a real like autism house looks like inside.   If you don't like what it looks like to you, leave.

I have the best intentions when I take my son to feeding therapy.  Don't you dare tell me I haven't listened to what his needs are and what he would prefer to eat.  Hello? Look at the name of this blog for crying out loud! Trust me, I have listened FOR YEARS.  While others run out to the store before a snow storm for bread, milk and eggs, I am clearing the freezer section of microwave fries out.  I know we are about to dive into some serious cabin fever.  This is one way I can help him feel better about that. By the same time though, there is basic nutrition a growing boy needs, PERIOD.  So yeah, I'm going to do something wild like introduce a protein that isn't breaded and battered.  This isn't a case of him eating when he is hungry because guess what? He won't! I've watched him starve himself.  I have watched him dehydrate himself and seen the effects of low blood sugar. Feel free to have your opinion that it's not necessary or I'm forcing foods on him.  This is just the way biology works.  Sorry, the world cannot accommodate him by making french fries filled with all the vitamins a growing healthy boy could need.

I have the best intentions when I push him outside of his comfort zone.  It's not to accommodate me.  It's just something I have to do.  It's just something he has to do.  There are things in this world that cannot be avoided.  There are haircuts to be had.  Nails to be trimmed.  Clothes to be worn.  I will do my best to accommodate him with these activities but they will still happen.  So sorry Captain Pantless, grab a pair of jeans.  You're not going to school naked.  Your nails won't be longer than my own and your hair will be cut.  Like it or not.  There are social conventions that one must do.  As for style of hair, that's up to me till your eighteen.  Think I'm kidding? Nope, I'm not.  Even then if you grow it out long, I will bug you about it kiddo just like my grandmother did to my uncle her whole life.  That's just motherhood for ya.  Deal with it.

You see, my intentions are to prepare this kiddo of mine well enough that he can be ready for life as an adult.  I want him to have meaningful employment and maybe even live out on his own.  I'm not really sure that's going to happen right now but he's proved me wrong before.  So maybe he will.   I won't always be there and the IEP and it's accommodations only last so long.  There's a lot in this life he will just have to learn how to handle.  Life isn't always fair.  I'm all about giving him the tools to help him but bumps in the road will happen.  I have the best intentions to raise a kind child and one that other's don't think is a brat.

I have the best intentions every morning when I wake up and every night as I fall asleep.  There's never a thought that doesn't include him in the equation.  I accept my intentions might not always work out well but I do intend to keep trying for him, for me and for us.

Tuesday, August 19, 2014

Two steps forward, one step back.

"Hon, we need to talk about Kiddo.  I think we have to call the doctor.  Maybe discuss medication changes.  Or consult with a behavior therapist..."

I have the same exact conversation with my husband this time every single August.  Summertime regression has once again reared it's ugly head and I'm really thinking I need to be smart and apply for next August off so I don't have to watch it again.  The plot just does not change at all. I'm really tired of being exhausted, worn out, mentally drained, spiritually crushed and heartbroken. Because it's every damn summer.

I know. I know. School.  Change of routine. All this time off.  The start of tween years and the angst that comes with it.  Yadda, yadda, yadda, I should not be surprised.  Knowing all of this makes it no better.

We decided to do a little road trip.  Clearly the husband either got me drunk or struck when I was having some "autism amnesia" to agree to this after the "Hottest week of June on record and a car air conditioner that died incident".   He sworn it would be fun.  He sworn he got the car fixed.  He convinced me that it would be fun.  That it would be a break and something to do with the long rest of break ahead.  I wouldn't have to cook, clean, do the therapy juggle and keep the kiddo entertained for a few days.  Plus I started see all the folks in the my circle do their own end of summer quick before the kids go back to school plans and I was all "Me too! Me too!"

The drive here wasn't too bad.  Six hours long and only got HELLISH the last hour.  OK I could almost deal with that but every car ride since the Kiddo has been stuck on HELLISH.  He doesn't want to leave the hotel room which kind of defeats the point of getting away when you don't go further than a single room.  He's not eating very well if at all.  We had a really good period of introducing new foods and he was really getting better.  This has come to a screeching halt.  I just sit there thinking about all the time and money we've spent on feeding therapy.  Did this just send it down the drain?

He's scripting like crazy. Beyond the usual for him.  He's just not very present and it's like pulling teeth to get him to have any sort of functional language exchange.  I don't expect a spirited debate about the 2016 presidential election but hearing nothing but mixed up random bits and pieces of words strung together non stop is making my ears cramp.

I think the final straw for me was tonight in the hotel pool.  Trying to wind him down for the night and he's literally pacing in the water.  Pacing in general is his thing.  It's his way to cope with the world.  I don't usually care when he does it. He's regulating himself.  However seeing him need to do it in the pool, that sent me over the edge.  The pool is his happy place.  The fact that he can't even feel relaxed in it breaks me.  I am kicking myself that I have even taken him on this trip.

Now do I just hold on for the next few weeks?  Get him started with a full day of school in September where we have that beautiful long stretch of school till about early November without any breaks.  We make a lot of progress during that time.  We always have.  I have to hold onto that fault.  Of course the other half of me is thinking is some of the progress we will make just be getting him back to where he was before he slipped back.  I feel like I'm dancing back and forth with him all the time.  Do I call the doctor?  Do I call the caseworker?  Do I call my own doctor and get my own medication adjusted?

One more day here.  I suspect it will be loads of preparing him to leave the hotel.  Then we will run through a historical place at a breakneck speed.  We might get him to stop for five minutes and eat a cookie if we are lucky.  Then will start the daily meltdown/panic attack to return to the hotel ASAP.

This vacation stuff, who's it suppose to be relaxing to again?

Wednesday, August 13, 2014

Lucky

I will be the first to admit this is not the life I thought I would have. I mean, come on. Who signs up for it?  Even teachers, therapists and other professionals that work with our kids clock out at the end of a shift.  Hell, half the reason I left the field after the Kiddo was born because autism was burning me out. HA! Autism Mafia was like "Oh no Girl.  Just when you think you're done with us, we pull you back in."

So yeah, some days are less than ideal.  I might not always show it online but trust me I am far from an Autism Pollyanna.  However despite the sleep, food and behavioral issues, I'm pretty lucky.  No really.  Let me break this down for you.

I"m lucky it's 2014.  We know so much more now.  Way more than even a generation before us did.  My kiddo wouldn't even be in my town's school district had this been like it was when I was his age.  More likely I would of been encouraged/pushed into sending him away to some facility where visits would be rare if at all and the care?  Let's not even think about that.   As much as I joke from time to time that the Kiddo is available for rent (Two night minimum) or that a band of kidnappers would probably return him after having him for a day, I really can't even wrap my head around this idea of him not living here.

I'm lucky for the Internet.  Again, this goes with the 2014 thing but when it's 1 AM and I can't sleep because I am too busy having insomnia over my Kiddo or he has decided it's a sleep optional night, another autism parent is up somewhere in the world.   Or there are blogs to read.  Or good quality crap TV to watch online.  The computer can be my lifeline and my mindless entertainment.  I can just lurk or pour my heart out onto the page like I am now.  Thank god for blogging.  I think I'm slightly less annoying to my family because I have somewhere to get this all out.  Or at least they see other people say "ME TOO!" and realize I'm not just making this stuff up.  I have seen a difference in them.  Maybe they're just afraid I'll put them in the blog.  I wield that like a sword then.  I can make ya a hero or a villain folks! ;-)

I'm lucky I have a husband that stayed around.  So many do not.  So many bail.  Not him.  He gets tired. He is never sure what kind of scene he's going to walk in on when he comes home from work.  (I suspect he checks in on Facebook before he heads home for the night.  I would.) Even when he's off work, he's just on another shift at another job.  This boss is far more demanding, the hours suck and this Daddying job won't even match a 401K.  He's here doing it with me though.  At least I have a co worker I get along with and I can say "WTF?" too.  Plus, he's kind of cute and I'm allowed to sexually harass him.  In fact, he encourages that.

I'm lucky my son's school district does not suck. He's been going since he was three.  Off the top of my head I can think of maybe three or four problems that needed addressing.  He's ten now.  That's a pretty good record when I think about it.  Before you get yourself in a twist thinking "Oh her kiddo must be much more high functioning and needs less.", nope, you couldn't be more wrong actually.   I am very grateful we live where we live.  We go without quite a bit in areas because being in this district means that much to us.  Yes, we go into IEP meetings prepared but I've never left one enraged.  We get to "a place of Yes" I guess you could say, both sides.

I'm lucky because this could be more complicated.  He could have several other health issues to boot.  I know several families who are dealing with autism and "Fill in the blank" medical challenge.  (Seizures, heart problems, diabetes, vision and hearing loss)  Again, he's ten.  ONE, ER visit.  Just the one.  I know right?  How the heck am I managing that?  Knock wood, I haven't a clue.  I"m just lucky I guess.

I'm lucky because it has been worse and it got better.  I'm lucky because I have gotten used to the way we live.  I'm lucky because my pity parties for one don't last as long as they used to back at the start of all this.  I'm lucky because I can find the humor now and then in this.

I'm lucky because even when it's a really crappy day I can go to a drive through window and get an order of fries and make my kiddo happy.  Whoever said money doesn't buy happiness clearly never saw the look on my son's face when given a side of fries.  Thank goodness it's fries he loves.  Foie  gras would of been a much more expensive food to obsess on. Sure wouldn't of worked as a blog title either.  :-)

Monday, August 4, 2014

I move on.

"While truckin' down the road of life, although all hope seems gone,
I just move on.


When I can't find a single star to hang my wish upon, I just move on,
I move on." 


Doesn't it always go back to a good old fashioned show tune?  Well it does for me anyway.  This one is from Chicago.  Great soundtrack by the way.

This is also one of my theme songs of autism.  I'm not kidding. I have a whole playlist of tunes. I'm usually listening to them to maintain my sanity in a noisy therapy waiting room, cleaning the umpteenth stain out of the carpet my kiddo has caused or just taking a time out from him and his verbal scripting.  Sensory breaks, not just for our kids.

There are so many feelings that are constantly coming at me with all this autism stuff.  It's a roller coaster and I tend to avoid those if given the choice.  I'm more of a sitting in an inner tube floating down a lazy river kind of gal.  Autism is all "Yeah, don't think so Girl. Let's go!"  Sometimes this is a good thing though because I can't just dwell in my pity party for one.  My Kiddo's needs just don't afford me that kind of self indulgent time.  I have to make appointments with myself for when I can be in a funk.  That's okay.  I'll just add a frowny face to my visual schedule when I get a moment.

I want to share with those who may need to read this some valuable advice I got from a friend of mine.

Feelings are information.  Not instructions.

Feelings are valid.  Your feelings do not outrank mine.  It's okay to feel how you feel.  It's okay to feel like you just want to run away.  Just don't run away.  You have a lot of work to do.  Plus, your kid will just find you.  My kiddo knows all my hiding spots now.  It was a bummer day when he figured out Mama Fry hides in the laundry room "doing the wash" when she just needs a few moments with herself and a People Magazine.  As frustrated as I get that my son tries to follow me into the bathroom to secure a front row seat to watch me attend to a tampon changing, I take a breath and gently remind him through gritted teeth that I need privacy.  I allow myself to feel annoyed and then I move on.  So does he.

The feelings may confuse us both at times but we move on.  There's no alternative.  No calling a temp agency for another mom to fill in.  No switch on his autism.  We move on.  Even when the day feels like all the other ones before it and it often does, we move on.  Our kids aren't the only ones that have trouble with putting a name to the feeling.  I know often mistake frustration with anger and you know what?  I don't beat myself over that.  I just take a breath and move on.  The moment I realized that I struggle with my emotions just as much as he does was pretty freeing.  I can feel the things but it doesn't mean I'm going to act on them.

 Summertime regression and behaviors everywhere.  It's not fun but we'll deal with it.  I feel like I've been walking on eggshells all week with the Kiddo but at least I'm still moving on .

Now I'm going to move on over to the couch, the latest episode of Project Runway and chill out for a while. ;-)





Saturday, July 26, 2014

Toast

I am toast.

I am burnt out.

I am done and yet I am not.  I simply don't have that option.  However, I can take my own advice and throw myself a pity party.  Won't you please come?  No gift required and the dress code is pajama casual.

This week has been a whirlwind of emotions for me.  Three rather big outlets all shared the same post of mine.  It's since been shared a crapload (yes, that is a standard unit of measurement) of times.  My email inbox filled.  A ton of new people liked my page.  A bunch of new folks started following me on Twitter including the OG (Orignal Gangsta) autism advocate Dr. Temple Grandin herself.  I still can't even wrap my head around it all.

Despite all this really cool stuff, I'm just sad.  The week my Kiddo has not been doing well at all.  He's fine at school but just falls apart once he is home. He is so full of rage.  There is no other way to describe it.  He's back to throwing things and going after our dogs.  Grabbing me by the wrist and just screaming like a banshee.  The usual things that have worked before for managing his behavior are now not working.  I will be making a phone call to his doctor on Monday and I guess it might be time for a medication change or dosage switch or exorcism.  I'm not really sure.  I'm really willing to try anything at this rate.

Yesterday afternoon I drove past a local school that was holding some sort of sports camp on it's field.  Typical scene of a bunch of mini vans and SUV moms dropping off their kids.  The kids running toward each other, laughing and screaming.  The moms all wearing sunglasses, chatting and clutching iced coffees.  There I was driving home with the kiddo from a therapy and it just really slapped me in the face how that is so not us.  How it has never been us and just when I think I don't care, I do.  I wish it was us  and it won't ever be. It made me cry. It made me cry just because I was crying.  So I cried harder and the snot was just blubbering down my face.  I looked like a nutter staring at these other families.

I can usually regroup from these moments but this week has nearly done me in.  It's hard to find the humor or the silver lining when the hits keep coming. Honest to God, the only thing that's been helping me stay afloat this week is the good that's been happening with my online stuff.  At the end of the day it doesn''t pay the bills but it's been one of the only thing keeping me from going off the rails completely, my little online family.  Tomorrow I was suppose to be taking my kid to a science museum and now I am not.  There is just no way I can chance it.  This behavior of his is unpredictable and he's getting too big to take out into public when an epic meltdown is just hovering.  Just like Kenny Rogers sings, "You got to know when to hold 'em and know when to fold 'em."  Dragging him through a museum I wasn't sure he would like in the first place, on a Sunday afternoon in the summer, and packed with people is not the jackpot I'm willing to gamble on. Nope. No way.  No how.

Tonight I lick the frosting off a cupcake and my wounds.  Tonight I indulge in some mindless TV on in the background and one of my dogs laying across my feet.  I'll go to bed after I post this.  I will take my own dose of melatonin and go to sleep.

Most importantly, I will try again tomorrow.

Tuesday, July 22, 2014

Autism Amnesia

Next weekend I will venture out with my husband and Kiddo to a science museum.  It will be something totally off our routine.  It will be a weekend so there's a good chance the place will be packed.  I'm hoping to meet up with some other mom bloggers so lots of people we don't know.  It is on paper all the ingredients for an epic meltdown waiting to happen.  Why am I doing this? Simple, autism amnesia.

Why yes, I do often forget the limits of what my kiddo can and cannot do.  He's ten. I really ought to know better by now. I don't always push the boundaries like this. Sometimes I like to do the stuff I always thought we would do once my kiddo was old enough to do it.  I adapt to him all the time.  I'd like him to extend me the same kindness now and then.  Plus, it's not like I'm taking him to a portal of Hell.  The stuff I plan to get him outside his box of interest is kid friendly stuff.  A kid science museum that encourages kids to touch all the things plus an active ten year who would of touched all the stuff anyway, that should be a slam dunk.

I've done these little tests with him enough times to get Autism Amnesia.  I get it in my head that everything is going to be just fine.  That there's no need to prep and we can just wing things.  So I have to keep reminding me to remind him that this thing is coming.  I just spent twenty minutes writing a social story for him, complete with pictures.  Thanks random folks who post pictures online of their kids doing things.  You're all in my social story now.  Don't worry. I only used the ones where your hair looked really good in the shot.

It's also possible that with enough prep he could totally surprise me.  That this big outing will be a mutha loving delight to him.  He could make a great game of looking all over the science museum for the exact folks that are pictured in his social story.  He has before.  Heck, if that alone keeps him busy so Mama can get some of her blog research done, I consider that a win.  (Tune in for that post later next week!) This too will contribute to my Autism Amnesia in the future.  I'll think to myself back to this event in the future.  "Oh he was so awesome that day at the museum.  Maybe he'll like going to the MoMA for the Andy Warhol retrospective."  (Note to self, unless that retrospective includes a performance art piece of eating french fries around the globe, the answer is will be "What the hell were you drinking when you decided to do this lady?")

So wish us luck.  The Kiddo will either have a heck of a time or give us a heck of a cardio workout as we run through the entire joint.  I suspect I might get a rest if I promise a stop off in the overpriced cafeteria for fries.  I"m either really brave or really forgetful.  :-)

Tuesday, July 15, 2014

"All kids do that."

It's said so quickly to me.  It's meant to calm my nerves but it just manages to do the opposite. I know the person saying it means well but to me it's a dismissive sentence. It makes me question my own thoughts and invalidates my feelings and experiences.

Here's the thing.  It doesn't makes the autism go away.  It does not give a solution to what a parent clearly sees as a problem. My child is struggling.  I want to help him.  Please don't tell me not to worry about it.  That I should just shake it off or be glad it seems that my kid is doing something "normal".  As if I should be congratulated that he is doing something typical.

Yes, he does do a lot of typical things that most ten year old boys enjoy doing.  Riding his bike all over. Belly flopping into our pool daily and swimming so long each day I'm convinced he's grown gills. Eating his body weight in french fries and hot dogs.  Singing along to songs his likes on the radio.  All activities that for a few moments I can sigh and relax a bit. Happy he is happy.

But that above mentioned love of hot dogs only came after hours and hours of feeding therapy.  No, he's not just a "picky eater".  He would have, in fact, chosen not to eat at all.  He wouldn't of just broken down and finally eaten when he was hungry.

That bike riding came after a consult with an OT and PT.  The singing?  So many sessions with a music therapist that insurance will not cover because they do not recognize it as necessary.  Even swimming only came after calling around to several different places to track down the one swim instructor that actually had experience with special needs kids.  Even then that was dicey as she didn't realize the havoc she caused when she suddenly canceled sessions twice with little warning.

Do you have to sedate your child just to get his teeth cleaned by a dentist because he's now too big to be held down by three adults to get an exam? Are you in an absolute panic every morning as you put your kid on the bus because you just don't know how the day will go and when the next phone call from the school will come? Do you have no play dates for your kid because although his typical classmates are kind to him, they do not call looking for him?

Do you sometimes post their milestones on social media and wonder "Will the folks I'm friends with even get why this is a big deal?"  Then you cry when you see that they do.

I know you want me not to worry.  I know you want me to realize that he isn't as different as any other kid his age.  I know he is "Different, no less".  Here's the thing.  I've said the exact say sentence to other moms about their neurotypical kids.  Joyfully chiming in that "Hey, my kid does that too!".  I've seen a few of them do double takes when I have said it.  I've seen a few sudden flashes of panic across their faces that I just said a behavior is very much like something my autistic kiddo has done.

So if the phrase doesn't always sit well with them, why should it sit well with me?  If you want me to relax about it, then they have to take a chill pill about it too. Unless this is about your kid keeping all the potato farmers in Idaho financially sound, because my kiddo does that too.  :-)