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.  :-)

Tuesday, July 8, 2014

Take that to the bank.

You ever sit back when you get a free moment and just think how surreal all this autism parenting stuff is?  Like when you're on the floor of your kid's room in the dark waiting for the melatonin to kick in.  Or you're prompting your ten year old to stop repeating the verbal stim "No repeating!".  It's moments like that where I have to take a deep breath and go into my mental vault of good bankable moments with my kiddo to get me through it.

We're back from vacation and it was kind of good.  Well, the destinations were good, the travel, Oy Vey.  My husband's car air conditioner decided to stop working and did I mention we were traveling during 90 degree heat? As we love to road trip, a large portion of this vacation was the journey and that journey felt like riding in a sweaty sauna with a crying child.  One who decided that every exit on the highway must be THE exit because he just wanted this road trip to be OVER.  I seriously thought at one point he would of considered going to the mall as the vacation destination because at least it would be climate controlled there.

I can't really get mad at the kid for being miserable.  We were too but I'm not going to lie.  Being that hot and uncomfortable PLUS listening to him build his meltdown up was my mental undoing this week.  Does your kid do that?  Like you can just see the meltdown building and building till it just reaches it's peek?  And I'm there desperately trying to keep him calm and talk him down from it.  It gets to a point of no return and I just think "Oh fuck it.  We're in it now.  Just scream." because I'm out of ideas and there are no solutions to be had.  Sometimes my kiddo just needs to wail and get it out of his system.  As much as my mom gut tells me to try to defuse the situation before it gets ugly, it also tells me when there's really no saving it.

So there we were for many days of driving, sweating and screaming.  I'm worried about the kiddo.  I'm worried about my husband who has to try to concentrate on driving.  I feel like I failed my kiddo because I can't calm him down and I have failed my husband because I can't be a good co pilot and keep the situation to a dull roar in the car.

 I was feeling pretty wiped out by the end of it.  The hubby and I made a point of tagging each other out a few times while at the resort to get some mental recharge breaks.  He went off to mountain bike.  I took the kiddo to a movie in the basement of the hotel which we had to ourselves so it was like an awesome private screening.  The boy and I scripted the whole movie back and forth to each other and laughed a lot.  Kind of helped erase the journey from my mind.  Later that night, I left my tired husband on the patio with a cocktail and took the kiddo to the pool.  Again, we had it to ourselves.  We goofed.  We splashed.  We laughed.  Couldn't help but think to myself how I better remember this.  I needed to put this in my memory bank.  I would need it and I did.  I needed to call it up not a day later when I twisted my ankle and fell flat on my face at the hotel dining room.  I needed to remember there was good in this trip.

I need to remember there is good in this life.  As freaking hard as it is, it's not non stop misery.  It's hard.  It can suck but there is good in it.  Everyday.

Husband wants to road trip again in August.  Here's hoping the AC will be fixed and I'll get a lot more bankable moments for rough times ahead.

Thursday, July 3, 2014

Sprinkles or Jimmys?

"And I sprinkled some white chocolate jimmys on top.  It's wicked awesome." 

I heard this phrase while I was on vacation in New England with my family.  Now I'm guessing that most of your reading this are completely confused what the heck a Jimmy might be.  However, my sister in law in is from Pennsylvania, so I've heard this phrase before and new it meant sprinkles.  I was kind of amused to hear it was an expression in this area too.  I texted "Auntie Fry" and she was happy to see those folks knew that it's jimmys and not sprinkles that go on top of ice cream.  

So since I was feeling punchy and I had all of your Facebook followers in front of me I threw the question out to you all.  What do you call it?  Now overwhelmingly  most said sprinkles but there were a lot of folks who knew what I meant by calling them Jimmys.  Then my fries from Down Under were quick to tell me "Oh no.  Those are called hundreds and thousands." and another phrase was added to the mix.  Auntie Fry and I texted back and forth in awe at the regional differences.  It really got me thinking how confusing that all was for one silly dessert topping.  This isn't the only word in the English language like this one.  It once again reminded me just how complicated it can be for someone with autism.  

My kiddo has been in speech therapy since he was roughly two years old.  I'm pretty sure we always will be.  There's just so much more he has to work on plus now that he is so open to trying new foods with said magic speech therapist, we'll be going till they kick us out.  I suspect by the time he's done there, we'll have a room named after us at least.  Or so I would like to think.  Everybody loves him there! My point is, it's not just getting him to be able to say these words clearly but he's still learning what they all mean.  Think of how confusing it is for you to hear "Put some jimmys on that ice cream cone."  Now you might not be familiar with the slang of a dessert topping but based on the rest of the sentence you could probably figure it out.  Or at least question what that means.  I think a lot of sentences to the Kiddo are like that.  So many words have more than one meaning and he's constantly trying to figure them all out.  Plus add tone of voice, well now it's getting really complicated.   He's also trying to figure out social cues and facial expressions to boot.  He's got a set of parents who communicate pretty exclusively in sarcasm to each other.  It's no wonder why some days he just sticks to his verbal scripts from various Pixar movies.  Those lines, those words never change.

Just another reminder of how many little stressors there are in a day for him and for us.  Now I'm off to write a social story for him about how some folks call fries "chips" before there is an international incident. 

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 just suck in hotels.  There are usually never have 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.