From one Jersey Housewife to another.

Dear Jacqueline Laurita of Jersey Real Housewives fame,

You and I need to talk.  Slap on some velour yoga pants and bring the kids. Yes, especially your youngest with autism.  I got all the autism sensory friendly toys here he could want.  Our kids would have a great time sort of ignoring each other until they both started fighting of who gets to watch toy commercials in Japanese on YouTube on the iPad.  Bring yours with ya.  I got wifi.

Now let me pour ya a big glass of Pinot Grigio. (That's how we housewives roll right?).

First, thank you for coming forward about what's going on with your son.   Yes I totally agree with you.  Autism is NOTHING to be secretive or ashamed about. You are way ahead of me with that.  The time at the start,  fresh off the diagnosis process.  Just being honest about it.  Maybe with your TV fame, you kind of had to be.  Either way, way to own it girl. That's awesome. Cheers! And now your blogging, tweeting, Facebooking, fundraising up a storm.  You want to spread awareness.  With ya there girl.  Clink!

Here's the thing. I'm going to keep it real with ya.  Keep it Jersey.  You got thrust into an influential position now.  There are a lot of  actual real housewives relating to you and your family's story.  When you talked about him regressing.  Not being able to say "I love you" anymore.  Girl, I got you.  I would of hugged you through the screen if I could.  I wanted to have an ugly cry right along side ya.

I got to ask you a favor though when you write, when you tweet, when you speak about this.  Be aware of what you are bringing awareness too. Now I know you just started this journey but you got to remember that it's just that, your journey.  You got to let folks know that.  What's working for your family, isn't always going to work for another.   There's a responsibility now on your shoulders on what you share. I've heard you speak of your son's treatment plan and I hear you spouting off what you have been told it will do.  That's great and all but share with us average joes the details.  How is really helping your kid.  What have you noticed so far?   Save me the sales pitch.  Remember there are great many of us that don't have a Bravo paycheck.  So sometimes we have to make tough choices on what we do for our kids.  We don't always have the resources, time or support to pull off what you do.  I'm not looking at you to be our autism guru.  Just keep in mind that when you speak, folks are listening.

You know what I wish for you? That you weren't a "Housewife".  That after a long ass day, you could eat the cookies you don't tell your family about and watch mind numbing reality TV.  I suspect being on a show has broken the illusion a tad.  Perhaps another channel?  Have you tried Vh1's "Mob Wives"?  That's some good crap right there.

I don't get Bravo checks.  I don't get appearance fees.  Although I do think I should have my own show. I'm hilarious. Can you get me on Watch What's Happening Live?  I love Andy Cohen!   I hope you get a chance to just hang out with other parents like myself in the trenches.  We're pretty awesome if I do say so myself.  So if you ever feel like hiding under the covers, go find some.  We've been there.  We just get it.  We always ready and willing to share our fries and a shoulder to lean on.  Just don't feel like you got to know everything right now.  Some of these answers you seek will only reveal themselves in time.

Another glass of wine?

Love,
Mama Fry

You know what's flipping cool?

Autism families!  That's who!

This morning I was once again reminded how much I love other parents in the autism trenches.  I'm sipping my umpteenth cup of coffee.  Chillin' like a villain because the boy is off to school and Daddy Fry is at the office.  Dog is taking his first in a series of naps for the day.   The laundry is going.  It's cold and rainy out and I don't have anywhere to be other than Facebook. 

I get lots of requests to post questions to the page.  I try to do it as much as I can because I know that there are so many people, so many experiences, somebody is bound to have the trick that worked.  So I just posted one and I smile how in minutes people just start responding with ideas.  It's like a think tank.  I learn so much from that page everyday.  The one kind of response that always just floors me with it's awesomeness is a poster who immediately replies "PM me" (private message) or "Send me a friend request".  I LOVE THAT!  How completely wonderful that is.  We live in a community where this happens a lot online.  We just extend our hand of friendship through the computer screen.  Never seen a person before.  They could live in another country and we are quick to say "yes I get you.  Let's talk". 

I also love what I call in my head the "virtual high five".  Simply by clicking the "like" button under someone's comment that person can see they are not alone.  That it is something you know as well.  It happened to you.  You get the joy, the stress, the emotion of it all.  A pat on the back to know your hard work is being recognized. 

I love how many people share what's going on in their lives.  Keeping it real and telling it like it is.  Thank you for your honesty.  You have to know your words encourage others. 

Mostly, I love the folks that can laugh despite having all the ups and downs that comes with ASD.  I mean eventually you just have to laugh.  Don't get me wrong, I have days where I go hide and sulk.  Eventually I have to pull myself out of it.  I don't have a choice.  Dinner has to be made.   The Kiddo driven to some sort of therapy.   The gears in the works don't stop.  If I'm going to keep on keeping on, I'm going to do it with a smirk and some sarcasm. 

And of course with a side of fries.

Autism, why does it always go back to poop?

Now this is the story all about how 

My life got flipped, turned upside down 

And I'd like to take a minute just sit right there 

I'll tell you how I became the prince of a town called Bel-Air 

Sorry, that's not the story you're going to hear here.  I mean I wasn't born anywhere near Philadelphia. Nope. I'm gonna "go there" and tell you the tale of rapid fire emails about my boy's poop.  Now you you know why I write this without names.  Like the kiddo needs this story haunting him later on? 

Sent the kiddo off to school in the morning.  Very run of the mill start of the day.  Up at the butt crack of dawn. Many cups of coffee on my part.  Chasing him around to wear pants.  Packed the lunch, wrote the status report in the notebook to the teacher and sent him on his merry way.  I went on to my merry way to the supermarket. 

While waiting in line for cold cuts at the deli, I started scrolling through my smartphone.  (The entire population of New Jersey was ahead of me in line.  Don't you all have jobs?  What's with all you people being here?).  I see the teacher has written me an email.  Not odd to get one from her mid day.  She likes to send little notes of progress or a cute picture.  I appreciate it greatly as it gives me insight to his daily life I'm not a part of first hand. The subject line catches my eyes though. "Kiddo is crying" 

What????  He is inconsolable. Sobbing on and on.  Did anything happen at home?  Something about James and a cookie.  We don't know anyone named James and no, there was no cookie for breakfast. (Although there has been in the past desperate days of "oh dear god please eat something!!!") I quickly respond back that all was well.  Was his sick?  Did she bring him to the nurse?  Did the bus driver or aide say anything?  Has she played some music?  Maybe he is asking for James Taylor. (Yes the kiddo loves him some folk music). 

She writes back. Nope not sick.  Music is not helping.  She'll have to catch the bus aide later and ask. As I give in my order for half a pound of honey baked ham sliced thin, an epiphany popped into my head.  POOP!  Has he pooped lately?  I don't think he has. I quickly type back "make him go".  Then it was radio silence.  I gather the rest of my shopping.  Constantly checking my phone for updates.  Worried about my boy. Wondering if I'm gonna get a call to get him.  Mumbling to myself about poop as I pack my bags.  The check out woman giving me the "this girl is crazzzzy" look.  I should of just told her it wasn't about me pooping but my kiddo.  Maybe then I would of looked less crazy?  Yeah probably not.  Socially inappropriate much?  This gal right here. 

By the time I get the bags unloaded from my car at home, my phone finally "pings" with a message from the teacher.   He was happily root toot tooting on the toilet.   Calming down.  And I can start to relax.  A bit.  It's progress that he didn't do it in his pants but getting him to go on his own, well, that's still needs work.   I'm glad he's trying but man I kind of marvel/resent/wonder why I have the life where I spend 20 minutes of my day emailing about poop.  I mean, that's just kind of odd isn't it?  To the rest of the folks on the planet.   Parents to kids with autism?  Not so much so.   I bet you have emailed, texted, facebooked, twittered, good old fashioned phone called about poop haven't you?   That's just a day in our world.   When behavior is wonky, ask yourself, did they poop?  Am I right?  You think that way. 

So lesson learned today.  When in doubt, go to the bathroom. :-)

This autism life...

Means having to confirm with my husband if he put a kazoo in the dishwasher to be sanitized or was this just another quirk of the kiddo.

This autism life means that despite the fact my son is eight, my husband and I have far to many conversations about our son's poop.

This autism life means that despite a love of going out to eat, I will always feed the kiddo something before we go.  Anything he eats at the restaurant will be a bonus.  Why yes, please wrap up those leftover fries.  They'll go down a treat for breakfast in the morning.  Hash browns, fries, same difference. 

This autism life means that I will have grown a thicker skin than I ever thought I could.

This autism life means still watching the same DVDs now as he did when he was two.  In fact, some beloved ones will need to be replaced.  Dammit Disney to Hell when they decide to put a flick back in the vault.  Thank God for ebay.

This autism life means we will never have a lazy do nothing day.  Every moment will be planned.  Even on vacation.  

This autism life means I will spend a majority of my life ferrying him around to various doctor and therapy appointments.   Waiting rooms are my life.  That's okay though.   Standing around a soccer field when it's to cold out doesn't look like much fun anyway.  Waiting rooms have cheesy magazines, Wifi, comfortable chairs and other parents in the ASD trenches to chat with.  I think I handle that trade off.

This autism life means I will survive on less sleep than I ever knew a human could.

This autism life means we celebrate and cherish every little moment.  Every little victory.  Every little step in the right direction.

This autism life means we will also be brought to our knees in despair.  We will be heartbroken when we least suspect it.  When we see our child completely ignore another child on the playground.  When we hear some jack ass use the slur "retard" out in public.  When we wonder what the future might hold for our rapidly growing son. 

This autism life means I will just brush myself off and try again tomorrow because I have no other choice.

This autism life will teach me I have thousands of friends that live in a computer and I wish I could share a side of fries with them. 

Autism ala Les Miserables

No, I don't think any of the characters were on the spectrum.  No wait a minute. That Inspector Javert guy was kind of obsessing a bit on Jean Valjean.  Like dude, it's like 20 something years gone by since he skipped parole over stolen bread.  Let it go. 

Anyway, there is a point to this post.  The kiddo has been doing pretty good over this long break.  I can't say that this time off of the routine has been that bad.  Other than being so far up my bum I swear he's lounging on my kidneys.  Honestly though, I saw that as a good thing that he was craving some sort of interaction and not off is his own head somewhere. 

My mom offered to take him for the afternoon so Daddy Fry and I could go catch a movie.  I guess by now you figured out we saw Les Miserables. (side note, IT WAS FANTASTIC!)  He had a good time as always at Granny's and ate her out of house and home.  Further convincing her that we never feed him.  I then suggested grabbing an early bird dinner at Applebee's.  He happily went and ate all his fries and his fathers.  (Hey honey, you ever notice that's why I order onion rings? Stops the fry thievery)

Got him home, got him showered and pajamaed up.  Thought, "Sweet!" and then ALL HELL BROKE LOOSE!  Frankly I still don't know the full how and why.  This boy melted down into an epic fit of rage.  The likes I have no seen since the pre Risperdone days.   I think he started to realize that even though he had an awesome day it still was not the usual routine.  He started in on a missed bike ride and that was it.  Into the zone of no return.  I thought we could ride it out.  Sometimes he's just got to scream.   Time outs galore.  We tagged each other out and took turns with him.  He was very aggressive towards my husband.  It finally got to a point after two hours of me looking at the husband and saying "Eff this.  He's going to bed"  Melatonin and more drama but dammit if Daddy didn't wrangle that boy off to dreamland. 

 While I'm listening to the last bits of screaming/protesting coming from the kiddo, I drive myself mad trying to figure out what the hell was it that set him off so bad.  Maybe it was this?  Or that?  Or WTF!?!?!  Like I said, could of been the bike ride that didn't happen but we've had to miss those before due to events or weather.  So I am left wondering once again if there was something we could of said or done differently that would of kept it from going there.  It can really break my heart sometimes not to be able to make whatever is making him so "Les Miserables" go away.  I'm a mom.  I'm suppose to make it better.  I'm suppose to hug him and reassure him but when he's like this, hugging is the last thing he wants.  In fact it makes it worse.  So my maternal instinct is of no use here.  There was no talking him down.  I just had to hope we would have a better day tomorrow. 

He woke up today extra early but it's par for the course.  Still a little pissy but was able to come round.   I gently encouraged my husband to go into the office to "catch up on work" but also I knew he could use the quiet time to decompress.  Hell, he earned it after getting the boy in bed.  So if he spent the time drinking coffee and checking Facebook, I don't blame him.  I would of done the same.  The boy seemed delighted to go to the supermarket with me and help.   We kept to the rest of the Sunday as per usual.  With the exception of setting up the Wii and having a grand old time bowling.  Not his usual Sunday afternoon activity but maybe today will be different.  Knock wood, so far, so good. 

I just jinxed myself by typing that didn't I?  When will I ever learn?

Christmas Break is no break.

Hey there!  How's it going?  We survived yet another dooms day prediction of the end of the world and Christmas.  Way to go! Kind of proud of the kiddo.  It was a whirlwind of activity for a few days and he handled it better than most adults do.  Of course there was no sitting at the table to eat with everyone.  He continued his cocktail party style of dining.  A nibble here, run away, come back, repeat.  Predictably he was able to sit still long enough for dessert.  Behold the power of ice cream. 

Santa was good to the kiddo this year.  Some new DVDs of movies he's seen in the theater and liked but will now ignore for a few months until he warms up to the idea of viewing them.  Or I just shove one in the player in a fit of "oh my god I cannot watch Steve get stumped by a dog again!" And then he'll obsess on them.  I look forward to hearing some new key phrases repeated by him again and again.  Speech therapy by Disney Pixar for the win!

Our big gift to him was a desperate attempt on my part to get him something age appropriate, so we got the Wii.  (and to quote my dad, what does Wii stand for?  What is it? That's pretty funny right?)  In true fashion we still haven't set it up nor is he asking for us to do so.   Why?  Because darn it there's Mouse Trap to play with and when I say play with, I mean set up his own rules and just make the little ball go through the maze a thousand times in a row because that's what happened on some Baby Einstein video that he remembers from years ago.   So project goal for the weekend is to set up the new gaming system in hopes to teach turn taking and working on motor skills.   Also, so Mama can kick his butt in Just Dance. 

Off from school till next week.  It's Thursday now and part of me is like "oh we can make it.  That's not to long to go."  A few hiccups of no therapy this week.  Damn those therapists that actually want to spend time with their kids!  What about our needs?  Just kidding.  I'm used to it now but there is still a part of me that looks at things like Christmas break as anything BUT a break.  A kiddo that thrives on routine and a schedule written in stone isn't to keen on puttering around the house to much.   Maybe I should get him a pair of yoga pants in his size. Perhaps that would make him more relaxed like I am right now?   Maybe I can get him to fixate on doing laundry for us.  Seeing as he makes so much of it.  Can folding clothes become his new hobby?

So that's the long and short of it.  Daddy Fry is back at work.  Mama Fry is seriously earning that paycheck I don't get. :-)  If all else fails to entertain, I'll just take him out for another side of fries.

A letter to the new autism parent

Welcome to Club Spectrum!  You didn't want to be here.  Don't feel bad about that.  No one signs up for this gig.   Think of it this way, at least you now know what the Hell is going on.  Better than not knowing at all.  Mama Fry ain't no expert but I do have some tips that help you from going bat shit crazy. 

1)Pace yourself.  You are about to start a never ending marathon.  Know when to take a break.  Embrace the couch and some bad TV.  Or if you are one of those gym goers, do that.  Avid reader?  Go fire up that kindle or go old school and buy a few books.  You're going to have a lot of time in therapy waiting rooms.  Might as well enjoy reading some check your brain at the door novels.  Know it's okay to get absolutely nothing done on some days.  Or weeks.   

2) Get off the Internet.  It can scare the crap out of you. Seriously, stop playing Dr. Autism Google.  You're looking for the autism cure needle in a Internet haystack.  Step away from the search engine. 

3) Get on the Internet.  I know, opposite advice.  Here's the twist.  Get on social networking sites.  Talk to other parents.  Get to know them. Not just what they did to treat X Y and Z. You'll get a better understanding if those choices are right for you.  Autism can make parents feel very isolated. Sometimes it is hard to get out and network.  Facebook, Twitter, and online groups are awesome.  Mainly because when you are in the dark on your kid's iPad hoping like heck the melatonin will kick in soon, you can chat away.  (Don't you go Googling melatonin yet.  You read this all first buddy!) Autism parents/caregivers are always awake somewhere on the planet. 

4)Be prepared to hear a lot of advice you did not ask for.  Warning, it never ends. I find sarcasm and raising my eyebrows  over my glasses helps a lot. 

5) Respect your elders in the ASD world.  Now don't go taking their world as gospel but recognize what they do works for them.  You'll see why as you earn your stripes.  The kiddo is 8 and we've been dealing with all things autism since he was before 2. Trust me newb, what you are telling me to try, we've done. Seriously, do you really want to be the type of person I just described in item number 4?  Don't be that know it all parent out the gate. Remember they have been sleep deprived much longer than you. They will be quick to shut you down.

6) Accept the fact that you are going to try stuff that is totally not going to work.   That miracle thingie you just read about in a chat group won't do jack all for your kid.  Meanwhile every other kid who has, is thriving.  It's the luck of the draw with this folks.  You meet one kid with autism, you have only met one kid with autism.  Some cures/therapy/meds will be duds.

7) Autism is effing expensive.  So when Grandma or Uncle Frank wants to know what your lovey wants for their birthday, CASH IS KING!  Don't be afraid to ask for therapy and or lessons for something as gifts.   These folks care about you and your kid.  They'll be happy to know what they bought is actually getting used.   Not sitting around collecting dust.

8) Accept that some folks who buy gifts for your kid won't do the above.  You're going to get a lot of gifts that your kid won't even be remotely interested in.  They meant well.   They knew it was a hot toy.  Save it.  You never know.  Maybe in a year or two, they might like it.  Or donate it.  Regift it.  Return it for therapy cash.

9) Be open to doing stuff you think is ridiculous.  You really just don't know what your kid is going to respond too. Give it an honest college try before you realize if it's a hit or a miss.  This means diet, meds, therapy, supplements etc. Just try.

10) Take your kid out everywhere.  I'm serious.  It may be small trips at first but it is the best thing you can do.  You're teaching them coping skills.  Life happens.  People have to food shop, go to the bank, post office etc.  You would be doing it anyway if they didn't have autism. Know their limits of course.  Baby steps first.  Today, it's a trip to buy milk.  Another time, maybe it's a trip to the pet store and the library.  Life from now on will take military like planning. Warn them what's coming but go about your business.  They smell fear.  Seriously, the more panicked you are, they will turn that dial to "11".

11) Allow yourself a pity party.  Moan, cry, rant and rave and do it when you need too.  More than once.   Just remember you still have a kid that needs you.   So don't dwell in it to long.   If you find yourself doing it to far to frequently, know when to ask for help.  Be it from a partner, family member, friend, or doctor. Yes, this isn't what you planned but it's here.  So now what?  Exactly. 

This isn't about getting through it to an end point.  This is your life now.  This is your new normal.  I can't promise it will get easier.  You will just get better at dealing with it.  Be it through humor, prayer, yoga, crafting, blogging, or a thousand other escapism activities. You will do this.  You can do this.  Remember for as hard as you are working, so is your child.  So now and then, relax and just order another side of fries.