Friday, May 31, 2013

Living on a prayer with Autism

Why yes I am using another 80's hair band song for a post title!   Frankly being from New Jersey I'm surprised a Bon Jovi reference hasn't happened sooner.  Admit it, you love me and my so cheesy you can put it on a cracker and call it a snack taste in music.

Anyway, consider this post my token religion post.  As little as I claim to know about autism, I know even less with religion. So I'm going to just rattle off what happened and you do with it what you will.

 I get a lot of emails as "Mama Fry".  Many asking for help or advice but quite a few are nice "gee ain't ya a swell gal, wish I could share a box of wine with you" types.  I love those and not just cause wine is involved. Honest!  It makes me feel good to know that I'm not alone on this journey.  There are folks out there just like me.  Inappropriate, sarcastic and tired.  We may be sleep deprived but dammit we are a good time when we get a break.   Be it a night out with the girls or hiding in your bathroom for five minutes claiming stomach distress while your family is whining they don't like what you made for dinner.

Some folks even write me that they are praying for me and my kiddo.  That's pretty nice of them.  They don't know me or us really other than what I tell you.   Granny Fry didn't raise no fool.  Heck it was Great Granny's and her's constant novenas to St. Jude, the patron saint of Impossible Causes, that helped me pass my math classes in school.  So when someone says they are, I say thank you.  But an email really got my Irish up today.  To make a long story short, yadda yadda yadda, blah, blah, blah

"Praying away the autism illness"

 What the what?!?!?!?!?!?  Did she just? Oh no she didn't!!!! Aw Hell No! Autism isn't a cold!  She better go thank the good Lord I wasn't in the room with her when I read this!  Nobody is going to believe this one.  Quick, let me copy and paste this and put it on my facebook profile page so other folks can see this.  (which is what I did.  Yeah I'm a piece of work like that but really that doesn't surprise you does it?) 

I'm pretty sure no matter how hard I pray or whatever god or goddess I pray to, autism isn't going away. If you really want to pray for me or any parent who has a child with autism, here's a list of good things to pray for us.

Pray for us that we get four to five consecutive hours of sleep a night. So we may be rested enough to do our jobs as parents.  To get the kiddos out the door to school and ourselves off to work, be it inside or outside the home.

Pray for us that we may have patience.  Gobs and gobs of patience.  For we get gobs and gobs of unsolicited advice and judgement pretty much every day.   Coupled with the fact that we do need to use what little patience we have to raise our kids who come with extremely unique challenges.  Sometimes we get emails from well meaning people that makes our blood pressure skyrocket. (see the above bold print statement)

Pray for us that we don't have snap.  That we have compassion for our kids, who sometimes cannot fully explain to us in terms we can understand what it is that they are going through. 

Pray for us that our school districts can provide the appropriate services our kids need.

Pray for us that are married that the stress of it all doesn't take a toll on the relationship because damn it sure does.  Can I get an Amen on that?

Pray for us that despite one bad day that we will go to bed (eventually) and wake up knowing tomorrow is a new day and it can be better than the last.

Pray for us that we have the endurance to get our kiddos to the therapies, doctor appointments and all the services they need.  Especially that we get them to the right place on the right day.

Pray for us that we can still keep our humor despite what life throws at us. 

Pray for us that no matter how frustrated we might get with autism, we remember autism is a part of child we love very much.  It's not ALL of them, just a part of them.  Unconditional love means you love all the parts, even the autism.

So you see, I'm not so interested in praying away a part of my kiddo.  Would I like life to be easier for him?  Hell yeah but praying away a part of him, no thanks.  That's like trying to pray away freckles or eye color.  Can't happen.  Won't happen.  Let's focus those prayers on something else.

Like praying Mama Fry wins the lottery. :-)

Wednesday, May 29, 2013

A good time with Autism

Is he having a good time?  Is he having fun?  Is he enjoying this moment that we have planned for, read social stories about, recited the schedule of events till I was blue in the face?  Is this everything I hyped it up to be?  A lot of the times, I've got no flipping clue.  None.

Case in point.  A few weeks ago my town had one of those "Touch A Truck" events.   Great concept.  Roll in a ton of firetrucks, buses, police cars, construction vehicles, etc and let kids go hog wild. Climb all over them! Honk the horns! Flash the lights!  Plus, do it as many times as you want because the event is free!  It's a win win!

In true French Fry Inc form we approach this event with care and planning. Tell him to soon that it's coming, he will drive himself into a frenzy waiting for it.   If I don't give him enough time however, meltdown city.  This ain't my first rodeo.  I'm kind of getting good on the timing.   The DATE becomes etched in the stone or in kiddo and we pray like crazy that the thing doesn't rain out.  Hell hath no fury like a kiddo off his schedule due to rain.  I will just be instructed to turn it off.   So there are many conversations on what we will see, what will he go on first, what vehicles he wants me to take pictures of that I know later he will pour over on his ipad with great obsession.  Finally the day arrives!  The weather couldn't be more perfect.  Not to hot.  Not to cold.  Sunny without a cloud in the sky.   He happily drives with us over to where it is AND he is...

Stunned Silent.

He does run around with a purpose.  Darting to each thing but I can tell he's doing the check list in his head of what he thinks he HAS to see.   I'm praying that all the things are there or it will get ugly fast.   He quickly climbs aboard...

A school bus.

Yes, a bus.  The very vehicle that he rides on five days a week all year long.   A bus he has ridden on since the day after he turned 3.  All this choice.  A school bus.  It's not even the driver's seat he goes for.  Nope, purposely walking toward some seat in the middle which was thankfully vacant.  I suspect he remembers riding on that one from a class trip.  Maybe one that happened years ago.  Most of the other kids climbing aboard are much younger than him.  I suspect they are the younger siblings who watch their brothers and sisters go off to school with envy.  My boy is just there.  Quiet.  Sitting.  To the point where we have to give him a timed countdown of when to get off and go look at something else.

He was a good sport and did so but after every venture to a new vehicle we had to return to the bus.   There was a safety to it.  A comfort I suppose.  I know a few years ago I would of gotten frustrated and said "Let's go home.  This is ridiculous.  He goes on one every day."  Now? I'm just like "Well he's not screaming and we're out of the house so I think he's having fun?"  The whole time he's still very quiet.  Granted the whole event is really effing noisy so I suspect that this was his own little sensory respite he built for himself.   Check out noisy other new thing, then retreat to the bus.  Whatever, it was working for him.  It didn't cost me a dime.   So what if we went on the bus 42 times in the span of an hour?

I did manage on that last trip on it to get him in the drivers seats.   He approached it with such reverence and seemed quite in awe sitting at it.  Part of me was thinking "Come on kiddo, lay on that horn! I know ya wanna!"  That's not his style though.  He was to busy taking it all in.

We retired after to some fine dining at a fast food eatery.  There, I watched him slowly come down from his quiet high for lack of better words.  He started finally talking about what he had just seen.  A more relaxed but joyful tone returns to his voice and he is smiling.  Yep, he had a good time.  Sometimes I just got to trust the way he does things and how he handles his world. 

I always have to remember though to order another side of fries. 

Wednesday, May 22, 2013

True Confessions

I have some stuff that I often think about at 3AM, when I should be sleeping but Hey, why do that?  He's just going to be up in an hour or so anyway.  Let me sit and stew.  It's strange how at that time of night you are most honest with yourself and your own thoughts.  Here are the latest ones bopping around my brain.  Or the ones that I can remember before I drifted off only to be woken up again by the Kiddo ten minutes later.

I don't care what causes autism.  I don't.  I really want folks to stop asking my opinion on this.  My kiddo is my kiddo.  How I am suppose to accept him for who he is while thinking at the same time "If only I had done this..."  Even if you showed me hardcore scientific evidence that this "something" caused it, I don't care.  What am I suppose to do?  Hop in a DeLorean and go 88 miles an hour to my past and stop the autism from happening?  It is what it is so I'm happy to move on.  I wish others around me would too.

One and I am done.  No, I won't be having anymore kids.  The kiddo is turning 9 next week.  We finally have a streak of no potty accidents.  You think I want to go back to diapers?  That's just my flip token answer but in all seriousness, stop asking me this. From the moment you deliver your baby some smart ass has to ask you will you are still in the hospital "So when's the next one?"  Be lucky I was medicated jackass.  I wanted to slap you.   A parent knows when they are done.  It's not like I just forgot to have more kids.  Whoops!  Slipped my mind!  I rocked a pretty good case of postpartum depression.  Just when I was finally pulling myself out of that, autism popped up.  I knew where I had to focus.  It's a choice that worked for me.  You remembered to have extra kids?  Good for you.  You must of jotted down a reminder on a Post It.   So ya think maybe by the time I hit 50, folks might stop asking?

I love writing the blog but I always struggle with what I will share.  I want to respect my kiddo's privacy.  He didn't ask me to write about him.  Hence the no names and rare pictures.  Although I do slip up from time to time.  I bet you all go "oh so that's his name!!!" and feel all cool and stuff.  Some of you have probably started to figure out who I am on Facebook too.  Yep, I'm in some Autism Parents groups.  Betcha didn't know did ya?  Or you did?  I'm there with you.  Talking, listening and sharing.  I like it too.  I feel like a secret agent when I don't tell folks.  007  Licenced to Stim. I'd love to be all "I am Spartacus or Mama Fry." in them but I like walking away from it too.   Sometimes I get really uncomfortable with being asked questions about what to do.  I'm not an expert.  I'm a hot mess in unwashed yoga pants who is desperately counting down the hours till I can take my bra off.  Really, you want to trust my opinion? I only know what worked for us. 

I really wrestle with that whole "God doesn't give you more than you can handle" cliche.  God shouldn't of trusted me with that so much.  I couldn't even remember to have more kids.  How am I to be trusted with a child with special needs?  I have no patience and cuss like a sailor on shore leave.  Sarcasm is my answer to everything and yet I'm handed a kid that I am told won't understand it. (I call bullshit on that one.  He totally does.  Autism Myth Buster right there.)   I stick up for other Autism parents when they are being judged and then I am judged for it too.  God, us Autism parents are getting the shaft sometimes.   Help a girl out and let me win a PowerBall lottery or something.  I don't want pity.  I want a nap. 

I don't have a crystal ball but I have to say some of the stuff my kiddo has managed to do have been awesome surprises.  We still have work but he's done more than I ever thought he could.  I love it when he proves me wrong.  I love it when he proves the jackass early intervention therapists wrong that worked with him and gave me ZIP hope that he'd do anything.  I often want to call them up and say "Can't communicate?" and put him on the phone when he's singing then get back on and say "How ya like dem apples?" Perhaps they said that to light a fire under my ass but honestly I don't think that's the case.  I think they were just bitches. 

So there ya have it.  The inner workings of my brain at an ungodly hour. Bet you expected more fries. 

Wednesday, May 15, 2013

Here I go again on my own...

Not just a song by Whitesnake! I made you sing it in your head didn't I?  It's now stuck in there.  Yeah, sorry about that. 

Anyway, here I am in the grocery store (well not anymore because I'm typing this but I'm trying to paint a picture here so stay with me) and I'm trying to figure out a question that I am sure many ASD parents think all the time.


With the help of his magic speech therapist, who at this point I am convinced is moonlighting from teaching at Hogwarts, the kiddo is finally trying some new foods.  Not only trying them but actually enjoying them.  On his terms of course.  So that's where it gets tricky because he very rarely explains those terms to me.  I get the lucky job of trying to figure it out.  Mostly I find myself doing this at 3AM when I should be sleeping.  No, that's a perfect time to sit, worry and stew. 

So here we are and it's clear one of the new favorites of his hot dogs/sausages.  This kiddo has been chowing down on them when we are out to eat.  Just call him Abe Froman, the Sausage King of Chicago. (Bueller....Bueller...) I'm kind of stoked about that.  Summer is just around the corner.  Family BBQs and vacations.  Feeding him while we are out just got a little easier.   Now of course he's got to do it in his own.  He takes it off the bun, wants it cut up and then attacks the whole thing with a fork.   Because as he would say "No eating with the hands!  Use a fork!"  Yep kiddo, way to self prompt!

I have some food shopping to do and I decide to pick some up for home.  This being an American supermarket means I will have no less than 43 different choices in brands and kinds.  GO BIG OR GO HOME!  This is where it will get tricky.   I have to figure out which one he will A) Actually eat and B) Is the less evil, less going to kill him slowly, Yes I know about the nitrates, healthiest choice possible.  

Cause dudes, it's not just as easy as slipping him a vegan organic free range super duper soy whatits and saying "here ya go!"  Nope, not at all.   Then I will be stuck with a pack of these he will never touch and possibly this might be all it takes for him to never touch a single hot dog or sausage ever again.  There is so many issues with trust when it comes to his sensory issues with eating.  Think about a time when you bit into a chocolate chip cookie only to find it was in fact an oatmeal raisin.  Didn't you feel betrayed to your very core?   I can't screw that up.  I won't screw that up.  Not when we've come this far.  His speech therapist is scrappy.  She'd probably slap me. 

No lie, I bought about 6 different kinds.  Like a hot dog/sausage buffet if you will.  I could host a weenie roast in the back yard.   You can all come.  I got a pool.  BYOB.  Cause if none of these are acceptable to the Kiddo, someones got to eat them. 

You're still singing that Whitesnake song in your head aren't you?

Monday, May 13, 2013


But this is not the mothering I signed up for. So now what? Exactly.

But everyday is such a roller coaster.  No amount of warning could of prepared me for the up, down and all around.  It wouldn't of mattered.  I wouldn't of believed it anyway.

But I got to remember he's trying his best.  He's trying to handle being parented by a neurotypical mom.  Well, let's be real.  I'm sure my little ASD apple didn't fall far from this quirky tree.  Either way, here we are. Trying to figure each other out while trying to figure our own selves out too.

But I have to have hope.  He's showed so much progress in the past two years.  I often immediately thank his teacher for it.  She's had A LOT to do with it.  She just gets him and I will sob my heart out when he moves on from her room at the end of this school year.  I wonder if she knows in my head I think of her as my BFF.  That's kind of stalkerish? Is that a word?  It's in print.  It is now.  But really, how could I not think of her as a good friend when she's made such an effort to help my son.  Nothing could of prepare me for that.  When someone non related and in a paid position seems to love your kid in a special way.  Damn, that's good stuff right there.

But I also have to be realistic.  For as much progress he has made we still have so much more to do.  It's daunting and I fear some goals just won't ever be achieved.  Sometimes it just smacks me in the face out of no where.  I'll be doing something like the laundry (which I am always doing) and I will think "He won't ever get married.  I'll never have grand kids."  I don't know this but there is a damn good chance that's the case.   Well I guess I'll just have to be that eccentric old great auntie to my nieces and nephews kids.  Won't be the same but what else will I do?  Exactly.  Adapt and move on.

But then he's proven me wrong so many times!  To the point where I think he does it just to mess with me.  I love those times.  Prove me wrong kiddo.  Is it Autism when he gets that fixated on doing something or pure Irish stubborn spirit?  Gee, I wonder where that comes from? ;-) If I could harness that energy he shows I could power a small city. When he is in, he is ALL IN!

But it is all so much work.   Always has been and always will be.  I am tired.  So bloody tired.  I'm tired of being tired.  I walk in a permanent fog.  The folks at Keurig follow me on Twitter.  (@FrenchFryInc) All the coffee in the world and cat naps stolen here and there still will never be enough because even when I get a chance to lay down and close my eyes I cannot turn off my brain.  I think of how much more there is to do.  What goals we need to focus on next.  Which direction to take.  How we will tackle the next big issue because there is always another big issue to handle. 

But I will tackle it because I love him with a power that is so fierce that is it frightening. There is a line in my life.  Before kiddo and then just kiddo.   The kiddo cannot be replaced.  I cannot fathom life without him.

But let's be honest here, at some point I will screw it up.  BAD!  Something will be the worst thing I could of done.   I'll either know it right away or it will hit me days later and I'll think "FUCK!"  I do a lot of stupid shit in the name of love.  I am a freaking hot mess and people now write me and ask me for advice.  What? I don't know what I'm doing at all?  WHY ARE YOU ASKING ME?? (why am I yelling?) I don't have my shit together at all.  I don't know what to say or what to think most days.

But I will keep trying because I see what hard work can do. I have many comrades in the autism trenches with me.  We'll brainstorm together.  We'll figure it out. 

And we'll probably order another side of fries.

Tuesday, May 7, 2013

Sheldon Cooper was right.

"Bitches be crazy" Do you watch The Big Bang Theory?  You should. The show is hilarious but don't let your kids watch it.  Or at least admit that you have let them watch it.   Online on any sort of mommy blogging/forum site because you will see within minutes that "Bitches do indeed be crazy"  (again Sheldon, watch it.  Trust me!)

I have watched two blogger moms get raked over the coals this week.  I'm sure you know what I'm about to talk about.  The story is always the same.   Opinion or story is shared online.  Usually in complete innocence/honesty/emotional out pour and cheap form of therapy while the kids are at school.  I think then some sort of alarm or sensor goes off in some moms.   You know the ones I speak of.   I refer to them as the "Santicmommies".  The ones that LOVE LOVE LOVE telling you how bad you are screwing up your kid.   Online Santicmommies are even more vicious than any of those passive aggressive ones you might run into at a party or the school drop off.  That computer/smartphone they are using sure gives them a big pair of brass ovaries.  Their phone case might have a cutesy picture of their kids on it but damn if they don't yield that thing like a light saber.

I get it.  We write, we should get a thick skin.  Don't read the comments you are probably saying.  Or shrug it off.  The longer I do this, the slightly better I get at that.   However they are moms just like me.  I'm not a writer.  Haven't my run on sentences and poor grammar shown that?  Even before I was blogging, I felt like a hot mess screw up every single day.  Do I need this confirmed to me in print?  Yeah not really.

But it's easy to troll.  There is no face you are saying these unkind words to.  No reaction you see.  You hit send and no immediately rebuttal is given.  It's like you sure told them and got in that last word.  HA!  Now everyone is going to see what a bad ass you are.  You're not though.  You're just a troll.  I'm pretty sure you don't use your real name or if you do, you go on sites that you know no one in real life on.  It's just a stranger so whatever damage you inflict doesn't count right? 

It does though.  The post I am proudest of has over 100 comments on it.  Most of them agree with me.  That first one that not only didn't but then decide to go for my jugular?  Yeah that stayed with me.  I'm human.  I'm seeing in black and white just how awful you think I am.   Yes disagreements happen.  Open discourse? I'm all for it.  When you completely disregard that person's emotions on a subject they feel passion for?  Then, you are my friend, an ass hat.  Since most of my posts are just me stating opinions, I expect folks to disagree.  If you are expecting me to engage in a comment war, I won't though.  I said my opinion.  See above.  I'm not typing all that shit again.  Like I got time for that?  I have laundry to fold. 

Plus Scantimommies, lets be real here.  I then start judging you and your parenting when I see you do this bullshit.  Immediately!  Sometimes I loose myself and rip ya right back online.  Stupid. I should know better but hey I"m human.  I forgive me.  I'll even forgive you.  Let's just own this.  This is horrible and we need to stop.  Unless some mommy blogger is posting how she force feeds her kids blood from newborn kittens, just scroll on bitches.  Seriously.  I am tired.  I have clothes wrinkling in the dryer.  I have a pound of ground beef I have to figure out something to do with for dinner.  (oh crap is it even defrosted yet?)

Let's just stop the madness.  Some men think "bitches be crazy".  It's for a reason!  Chill out.  Deep breaths.  Resume your awesomeness.  Order another side of fries. 

Wednesday, May 1, 2013

The Kiddo's Cookbook

My parenting life is so not the norm.  I know this and I'm okay with it, somewhat. Little things though do get under my skin.

Like yesterday the kiddo comes home with a note inviting me to a "Mother's Day Tea" at his school.  I knew this was coming as with any event we prep him for it a month in advance. He's only just in the last six months been okay with seeing me at school and more importantly, seeing me leave it without him. I cannot tell you how much of a drag it was to drop off meds to the school nurse once a month when he classroom is right next door to her office.  Spy v Spy ain't got nothing on me as I would creep passed his classroom door twice.  Once his principal saw me in the hall and I "Sshhhh" ed him really loudly as he went to say my name and mimed to the open door while throwing my hood up on my coat so the kiddo wouldn't notice.  Cause that was my life.

I'm happy to attend.  What I'm not so happy about was the note attached to the invite asking me to send in a recipe of my child's favorite meal that I make so they can put together a cookbook for all of us moms.  Ummmm, clearly they don't follow this blog.  Something tells me sending in a picture of the Ore Ida bag isn't gonna cut it either.  I'm seriously considering sending in one for Coq an vin just to mess with their heads.

And I know I can't be the only mom rolling her eyes at this right?  Whether your kid is neurotypical or has an alphabet soup diagnosis after their name, kids generally eat the same damn things.   Do I really need a recipe book filled with recipes like Mac and Cheese (which he won't eat) or frozen pizza?  Some moms will actually be able to send in a real recipe that their kid actually eats but most like me are currently wondering how to write up a recipe for chicken nuggets and tater tots. Here are some of my choices.  Which one do you think I ought to send?

Rip straw off of box
Whine until Mom unwraps it
Pop in box.
Sip and enjoy!

Microwave French Fries
Drag Mom to freezer and point to box
Rip open box and toss on the microwave turning plate you keep forgetting to clean
Have child press "French fries" on his Proloquo2go app again and again till the microwave beeps
Dinner done! Or Breakfast. Just call it hash browns

Veggie Stix puffed rice snacks
Buy ginormous bag from Costo
Rip open bag so fast that some fall out onto floor. Don't worry. Your pets will like them.
Eat only the orange and white ones. Leave the green ones for Mom.  They pair nicely with wine after child goes to bed.

Hot Dog
Boil Hot Dog and place in bun
Have ten minute discussion with child if they want ketchup or mustard.
Remember they won't even eat said hot dog so who cares?
Child will eat said bun and leave the hot dog.
Mom will eat said hot dog with her green Veggie Stix snacks from above.

So, which one should it be? ;-)