Thursday, June 26, 2014

7 Travel tips when your kid has autism

The school year has ended and we have some free time on our hands before the kiddo is back for ESY (extended school year) aka "summer school".  As I need to keep this kiddo busy and the hubby and I do enjoy travelling, it's time to pack up THE ENTIRE CONTENTS OF MY HOUSE and hit the road with autism as our co pilot.

Every trip we have taken has been an adventure and a learning experience for the next one.  While we haven't perfected it, we have gotten pretty good at some of the surprises that travel brings and lobs at your sleep deprived Oh my god why does my kid make so much noise while he sleeps at night head.

1) Confirm everything! What your room will include? I don't care so much about if my room has an iron when a fridge is way more important to our needs.  Places to eat? Check their menus online.  For us the most important thing is the pool.  Is it outside or inside and more importantly, open?  We once showed up at a hotel with a pool drained and being remodeled. We walked right out and booked another place in the car. Never again! For us, that's not even an option. 

2) Plan one event a day. Don't think you can pack in the Louvre in 15 minutes Griswold. You might not see as much now but you are traveling with autism. You can have a good time at one place or a miserable meltdown time at several. Know your limits and more importantly, your kid's.  We find writing out a list of what we were going to do each day and going over it with the kiddo over breakfast worked.  He could carry the schedule with him and check off each thing as we went throughout the day.  Sometimes we were able to sneak in more like going to a train museum and then taking a train ride after.  It presented itself as a smooth transition and we went with it.  With the kiddo we know when we spring something on him it has to be of high standing or he's not going for it.  Train rides and food usually do. 

3) Take breaks. Your kid is already off their schedule and out of their comfort zone. We use the pool. A lot. It helps regulate him and burn off some of that energy. We pack his sensory sock and some fidgets.  We also take breaks from breaks. Hubby and I tag team each other. He goes off and visits the 14th President of the United State's house aka Franklin Pierce.  I go to the spa for a massage. (Personally, I think my breaks are more fun but whatever.  I knew what I was getting into.  On our first vacation I did agree to going to see Martin Van Buren's home. Yeah, that's some true love right there.) 

4) Pack a power strip. Trust Mama on this one. Chargers for 2 phones, iPad, hand held games,  DVD player, iPod, digital cameras, laptops, etc... Outlet placements generally stink in hotels.  There are usually never enough of them.  This also keeps you organized if you have one designated charging station set up.  Chargers tend to grow feet and take a walk in my experience.  When you are packing up to go home, they will all be there.  

5) Take out is your friend. If your kid has had too much that day, comfort eating pizza in bed while watching TV is a glorious thing.  Is there anything better than that? I don't think so. Hotels know this. They usually have menus in the room to somewhere. Or ask the front desk.  Plus I scored coolness points having fries delivered to the room. It's not just your kid who gets worn out on vacation.  Doesn't the idea of sitting in your pajamas munching on mozzarella sticks sound good?  Eating out can be a challenge and by dinnertime sometimes all this family togetherness has just fried every last nerve.  Cut yourself a break, take off your bra and order in.  This is where the fridge in the room is a plus. Mama travels with a corkscrew and I have no problem drinking my wine out of a hotel plastic cup.  I keep it classy.  

6) Upon checking out of your room, leave a few bucks for housekeeping.  If your kid is anything like mine it will look like a whirling dervish ran through throwing fist full of broken Goldfish crackers everywhere.  I consider that good karma for the next trip.

7) If it ain't broke, don't fix it. This will be our third trip to the same resort.  We ALL love it there.  Plus my ideas of what is a vacation have changed since becoming a mom.  No cooking and cleaning for a few days? Works for me! This location for whatever reason makes my kiddo incredibly happy.  I suspect it's close proximity to two different historic train rides, an indoor and outdoor pool and parents who say "Sure you can have fries again!"  at every meal.  It's his vacation too.

So there you have it.  Wish me luck and pray to the travel gods I won't forget to pack the melatonin!

Tuesday, June 24, 2014

What are you working for?

I must ask this question at least a dozen times on a good day.  If you are living in an autism world like me, you are probably familiar with reminding your kid about what currency they value.  You also are very well aware that currency might be less about actually money and more about something sort of quirky. Hence, the reason my carpets are the cleanest part of my house.  My kiddo loves to vacuum them.  Having two dogs, I use this to my advantage.

I bet you are now thinking "Great she's got something to hold out as a carrot to the donkey but my kid doesn't like anything!"  I hear you my friends.  I really do.  Since it took till about the age of nine before we realized that the vacuum made my kid so flaptasticly happy.  Trust me, we had many years of staring blankly at both therapists and teachers when they asked us for ideas as to what would light a fire under his arse.  Literally nothing worked on motivating this kid.  Nada!

My kiddo also has the fabulous habit of growing weary of said motivators.  Right now he's digging it but I wouldn't be too surprised if he drops it soon.  He'll decide he is over vacuuming and the joy that is chasing my two dogs with it.  I will be sad.  Partly because I will no longer have him being Captain Carpet but also then what? What will be the thing to get him to want to do all the things.

Since we started with early intervention at two years of age we have been looking for the great motivator.  We would find some toy or food and I would think we were in the clear.  Then he would ditch it.  Pretty quickly too.  The professional would look to me and I'd just shrug and say "I got nothing.".  I get the reason why they would ask me. Here's the thing therapists and teachers, a lot of times we just don't know.  We are up an autism creek with only one paddle and it's one that's about to break.  The only thing I have learned from all of this is the motivator will change often and suddenly. Without warning and usually when we really need him to get through something.  It's just the way this autism life is for us living it. You work for a paycheck.  I bet despite the fact you are getting money there are many days you just don't feel like working.  My kiddo doesn't have the worry of paying rent or bills.  Right now, it's a pretty french fry filled charmed life.  (Yes, even his beloved fries don't motivate him really.  With his food issues, he has picked starving many times.  So yeah, doesn't hold much weight with the boy.)

So what else can we all do? Keep trying I guess. I mean, what's the alternative?  I think back about a time when not only did nothing motivate him but the very thing that moves him now used to scare the living daylights out of him.  Vacuuming was not something I did unless I really craved a small child howling like a spider monkey clutched to my leg.  Yet here I am today, making plans on when I will let him visit the vacuum section at Target this week.  We're going on vacation soon. We have to get that in before we go. Makes and models change more often than you would think!  I wonder if that means by the time he is old enough to drink he won't be scared of the blender anymore. Maybe he'll offer to make Mama her margaritas in the summer.  That would be awesome.  You're all invited over for cocktails.

A girl can dream can't she? ;-)

Tuesday, June 17, 2014

I'm mad as Hell

And I'm not even given the choice if I want to take it anymore.

No one talks about the anger that comes with autism.  I've seen a thousand blogs about mourning and grieving for the child you thought you had but SURPRISE don't.  I've seen a thousand more about dealing with your depression because of the constant stress that caregivers are under.  Then there are all the fuzzy feel good autism stories of the moment.  You've seen them.  They come in viral waves through your newsfeed of some kid with special needs doing something amazing or people being supportive.  They usually hit a peek and then we wait till the next "Gee, ain't autism swell" story.

No one talks about being pissed off though.  Well, I'm sure they do.  It's just that those stories don't get the Huff Post or UpWorthy love do they? I'm not going to lie.  There isn't a day that goes by where I don't think at some point "Fuck this!".  This autism stuff.  It makes me mad.

I'm pissed off my kiddo is constantly wrapped up in anxiety.  Even about stuff he looks forward to doing.  He is so easily overwhelmed and consumed by his fears.  I hate that this is part of his life.  I hate he can't always communicate his anxiety.  I just have to guess a lot and then store it in the "things that may set him off" file in my brain. That file grows bigger by the day and yes, this makes me angry as Hell. Let's not forget the compulsion that makes him completely unaware of his surroundings at times because of his fixation of the moment putting his own safety at risk.  I am seethe with rage over that too.

I am full of rage at every school shooting because now Aspergers/Autism is immediately the first thing that media brings up.  Without even researching if shooter did have ASD and more importantly, had other co morbid conditions and issues going on.  Even if it happened once, please stop linking violence to autism.  Maybe it's because these shooters have all been males and I have son that I am extra weary of this.  I just look at my kiddo thinking how he already has an uphill battle of proving himself to the world.  He doesn't need to be feared.  In fact, he's much more likely to be a victim of violence and or bullying.   Another fact that feeds my anger.  It's not an issue of if this happens but when.  That's how high those odds are in this case.

And since I'm on a roll, how about every celebrity (and that term can be used loosely for most.  Looking at you reality TV players)  that has autism in their lives not feel the huge need to write a book about autism.  Can we all decide that they do not need to be propped up on pedestal  and be deemed autism gurus?  Cause all their books do is piss off an already divided community. Like a lot.  Those stories then become the latest autism hubbaloo that fill up a social media newsfeed and frankly they are big fat wastes of time.  I'm not saying they don't have a right to share or use their platform but for fuck sake, please realize that we average Joe moms don't need yet another story on how you overcame autism. There is no end game in autism.  It doesn't end for us simply because we got to the last page.  Maybe that's why I prefer blogs.  The story is never over and ever changing.

Mostly though, I'm mad at myself.  I get consumed with my anger towards myself and my choices.  I hate that I have so much second guessing going on. I hate that my husband is always exhausted and freaking out about being the sole bread winner in this house.  I get mad at myself for needing to be reminded that my kiddo is awesome and has come so far.  I get even madder though when I think about how much more there is ahead to tackle.  Being this mad and full of anger all the time is effing exhausting and I'm already sleep deprived.  (Yeah autism, what's with this whole sleep is optional thing cause damn that really pisses me off too.)
I think I need a time out.  Off to hide under my covers with a book or until the kiddo decides I am done reading said book.

Wednesday, June 11, 2014

Just doin'

"It's so good to see you. It's been too long. How you doin'?" (That's how we say What's up? in New Jersey)

"Just doin'" I say with a shrug and a smile.  I know the person means more than just asking how I am.  She means my son.  She is interested and wants to hear the good, the bad and the ugly.  She's listened to me brag and she's listened to me cry buckets of snot over my kid.  Right now, I don't have much to report.  We're "just doin'".  We wake up. We go to school/work.  We go to therapies.  We go to sleep. It's a bit of an autism rut at the moment.

Believe me, I am happy with the rut.  He's not the only one that doesn't want surprises.  l like knowing what's coming next.  It means everything we are working on is sticking.  We haven't had any regressions in a while.  (Knock wood. By that I mean knock my head because I'm Irish and that's what we do.) So that is good.  I don't have a tale of woe to regale her with as she nods sympathetically.

I also don't have any "Oh my god! Did I tell you about???" moments either.  This is kind of where I get a little worried as an autism parent.  Are we stuck here?  Is this all it will ever be?  Will this be as the movie by the same title says, "As Good As It Gets."  I'm not sure.  He's now ten.  He's come far but what if the progress has stopped for good?  That thought is so overwhelming to me I want to go hide under my son's weighted blanket. I love him how he is everyday but eventually I won't be on this planet.  Although I joke how I will never die because I can't, the sad reality is hard to ignore.  I have to send him out there into the world.  We don't even have siblings for him that we can kind of hope to help here. I constantly feel like I am racing to get him ready for a race I won't get to see him finish.

There have been little spurts of wonder here and there lately.  Like when I discovered he likes to snack on frozen string beans and I realized I could get a green vegetable in him. Bonus points, I don't even have to cook it.  Why he saved me a step in the kitchen! How very thoughtful!  Or the time he reached up to touch my shoulder while I was driving and informed me that next week his speech therapist would be on vacation.  "Put it in the phone!"  He knows the world is in my iPhone. :-)  This morning I realized I could get him to finish his glass of milk rather quickly by not saying "finish it" but by saying "empty it down your throat."  Picks up glass. Drains the last bit like he's doing a tequila shot and goes on his merry way.  I realize there were no whiny tears because the word "finish" to him probably made him think I would take it away.  Or so I think.  I'm not sure.  This kiddo of mine didn't come with a Rosetta Stone.

I always feel a little strange reporting these kinds of little steps to anyone that is not directly connected to autism.  Like teachers and families get it but the average Joe, do they just think "Man, Mama Fry is really reaching with her humble brag that the Kiddo made her coffee by putting in the K cup in the machine." (Dudes, that's a life skill! A very important one to Mama, I may add.)  I know it's not cooking but hey, it's a start.  While frozen green beans might be okay, gnawing on raw chicken would be bad.  I don't think he'll ever like cooking like I do.  If he knew a few things so I knew he wouldn't starve, I'd feel a little better about it.  Seeing as he'll probably living with me, well, forever, it would certainly be nice if he got savvy enough behind a bar to be able to uncork Mama Fry's wine or whip up a cocktail shaker of whiskey sours.  Hey, it's math and science.  Teachable moments abound!

Panicking about the future really doesn't get much done but I will keep planning for it.  I guess I will just embrace the fact that we are "just doin'" and be okay with that.  We have had these moments before and then something BIG happens.  Fingers crossed it's something good.  Now pardon me while I show the Kiddo how to use the microwave to cook fries.  I suspect this is a lesson I won't need to teach more than once. ;-)

Tuesday, June 3, 2014

10 Things to do when you're having an Autism Family over

I'm often excited when I see how many folks follow this blog that don't have autism directly in their lives.  (aka Waking them up at 3:30 AM to confirm that they will have art class that day at school) I think it's kind of awesome that someone that really doesn't have to know more wants to learn all about it.  Kind of restores my faith in humanity that you would rather learn about autism and autism parenting from the folks that do as opposed to what celebrity du jour says about it in this week's People magazine.  So to you, I tip my cap.  If I wore a cap. Which I don't because it would give me hat hair and I'm from Jersey and our hair is very important.

Anyway, this post is for all you kind people.  The ones that decide to perform the ultimate act of faith and trust and invite us over to your homes for a visit.  Even though you have heard more than your fair share of stories that might scare you, you still like to have us over for a BBQ or a party.  You're good eggs.  We like you best.  No really, we do.  We talk about you all the time.  :-)

So here's a few tips that can help you help us have a successful outing.  I know you didn't ask but since you are so swell I bet you'll read this anyway because you want to be the hostess with the mostest this summer season.

1) Give a head's up to the people living in your home that autism and it's entourage is coming over.  I'm not saying share it with everyone crossing your threshold BUT the immediate folks that live there would be nice.  (i.e. Spouse, kids, Grandma etc) You might want to prep your kids that yes, another kid is coming over but they may not want to play the same things as you do or with you at all.  Tell Grandma that the kid in question isn't being rude when they don't respond to questions about what grade they are in.  Let your spouse know to keep those drinks topped off for that tired set of parents.

2) Secure the parameter! The kid could be a runner.  You might think at first "Why are these parents up this kid's bum so much?" Well, there's a reason for it.  I'm not asking you to build a fence or install ten new locks but if you have a fence, make sure it's shut.  Inside event? Lock the back door.  You don't need it open.  Or close doors on any rooms you don't want my kid in because trust me, he will go in them.  He's like Goldilocks's.  He likes to try out every one's bed.  Feel no need to make yours if we come over.  If the door is open he will be diving under the covers in a heartbeat when he needs a sensory break.  We just saved you a chore! You're welcome.

3) Want to be super extra awesome and earn all sorts of good karma? Take over watching our kid so we can eat.  Often parents tag team each other at these things but it is nice to share a meal with my husband at the same time he does.  So tell us you got my kiddo, I will love you for life!  You can even outsource this job to an older teenager.  My sister in law has asked my nephew to keep tabs on the kiddo in exchange for extra video gaming/screen time.  It's a currency that is worth more than cash in her house.  We get a nice visit with you, your kids later can create a Minecraft masterpiece.  Doesn't cost you a dime. Everyone wins!

4) Realize we might show up with our own food.  This is not a snub at your cooking, we just know our kids can put your picky eaters to shame.  You might be thinking "No, I got the hot dogs or the gluten free nuggets for that kid." but sometimes brands make ALL the difference.  My brother in law used to assign us the job of bringing something to his parties that I knew my kid would eat.  He knew it would be easier for us.

5) Oh my god! You're like so excited to tell us about this book you heard about or this story online you saw about autism.  Stop! Ask yourself, is this person online?  If they are, yes, they already have heard about the book "The Reason I Jump" or seen the picture of the kid that can draw all cityscape from memory.   The YouTube clip of Carly, the girl that can't talk but can communicate by using a computer? Yep, seen it.  No need to whip out your iPhone to show me.  It's not that we don't appreciate your enthusiasm about this.  We do think it's cool you're in the know.  Here's the difference.  If the reason you bring it up is because you want to talk about it in more detail other than "Oh you got to see this or Have you heard about?" then I am all in.  But if it stops at, "Look, this kid draws from memory! I bet your kid can too!', my eyes are going to glaze over.  Sorry. Remember not all kids are the same.  My kid can barely sign his name his fine motor skills are so bad.  Telling me about this autistic artist really isn't as uplifting for me as you might think. So again, viral stories du jour, skip it.  We already saw it in the newsletter. 

6) We don't know all the autistic people in the world.  Please don't tell me that your mailman's girlfriend's daughter has a kid on the spectrum.  I have not seen them at the secret autism meetings.

7) We live and breath autism 24/7.  Trust in the fact that we would love to talk about something else other than that topic.  It's cool you're all down with us on all things Autism.  There are just many times I'd rather talk about this season's True Tori on Lifetime. (She's a Spelling.  She knows how to make good TV. I know this has to be so fake, fake, fake!! Yet, I still watch)

8) Realize our visits might be short.  Or we might have to leave suddenly.  Or we might need to take our kid into a quieter room for a bit.  It's nothing against your party, our kid is just overwhelmed and needs a break.  Being cool with that makes us relax.  When we are calm, our kids will be too.  So point our your DVD collection to us.  Our kid just might need some Pixar therapy for a bit and then be good to go for dessert.

9) Woohoo! Successful visit.  You decide that we are cool and want to do it again.  You call us up on a whim and invite us over for pizza or something because you're wild and crazy and spontaneous.  Then we do something awful like saying "No" You must not take this personally.  Maybe we have been up since 4AM.  Maybe our kid has been having meltdowns all day and we are spent.  Maybe we don't even have on our pants.  We just know when it's a good day to throw caution and the routine to the wind and when to just stick to what works.  Maybe what is working that day is non stop verbal scripting from Thomas the Tank Engine and chilling in a body sock under four couch cushions.  Sometimes we just got to roll with it.  I might send over my husband to you so he can get a break or I might just put on a bra and happily escape Living La Vida Autism for a while.

10) We don't expect your kids to play with our kids.  I don't anyway BUT (and you knew that was coming) I do hope your kids will be nice to my kid.  That's all I ask.  A little kindness goes a long way.  Remember, you're the swell eggs we talk about at the secret autism meetings.  :-)

Bonus tip: A plate of fries will always go over well.  :-)