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Tuesday, November 25, 2014

The things I know to be true.

Despite living this autism life long enough now to qualify for tenure, I am forever being reminded that the Kiddo is the boss/teacher.  I am his mere unpaid intern.  I learn on the job.   If being his mom gave college credit, I suspect I would only be halfway towards a degree.  There is still so much to learn.

There are some things though that I know to be true. 

I know now there will be times I cry.  Hard, ugly, snot bubble tears.  Out of frustration. Out of joy.  Out of being completely overwhelmed by even the silliest event.  (My family still doesn't quite understand why me dropping a meatloaf caused me to collapse in a puddle on the floor but that day.  That damn stinking day, it did.) Sometimes all in the same hour.  Autism is action packed like that.  Then he'll go do something awesome like running up and hugging me and then running off again.  That will never not make me teary.

I know that the communication issue isn't just on him.  It's on me too.  This isn't just about him finding a way to explain what he wants and needs.  This is about how I listen and understand his language.  I know there is a difference between McDonald's, different McDonald's and the other McDonald's.  What, you don't?  Location, location, location.  I know that cheese quesadillas are pizza in his world because they are cut into triangles and calculators are phones because they have number buttons on them.  I thought I knew language.  He's showing me a whole new way to understand it.

I know that when a day off of school rolls around that I better have a plan for the day or he will make one for me.  One that might include recreating a previous class trip or outing that took place four years ago.  I get the fun task of not being let in on that fact and having to guess a lot.  He is better at dropping hints though and I've gotten smarter by approaching him with "OK, here's what we're doing today." before I am told we need to eat at the Applebee's in Norfolk, Virginia for lunch today.  Did I mention we live in New Jersey? ;-)

I know to let go of traditional milestones and benchmarks.  He sets his own and they are way better.

I know he can have like ridiculously great eye contact and will look so engaged that for a moment I will forget autism lives here.

I know he'll never be the kid that leads the social interaction.  He's always going to be the follower, not the leader.  That scares me.  A lot.  I also know though that since his attention span is short, he won't follow for long.  So "Yay!" for impulsive behavior. Who knew there would be benefits to it?

I know it will never not hurt to see a typical kid try to interact with him on the playground and eventually get bored and stop.  Or just be confused and run away. 

I know I shake off that above mentioned hurt much faster now.  Doesn't mean I forget about it though.

I know I will be rendered speechless when I do see a typical kid just go out of their way to be nice to him.  It gives me hope even though I wonder will this change once the teen years hit. 

I know that since I started writing about autism and our lives I am now forced to really accept the reality of our situation.  That's been both good and bad. 

I know that kiddo of mine will continue to surprise me. 

I know the joy of meeting other autism families that I have gotten to know online.  I hope to do more of that.  Fry Convention anyone?

I know there will be those who give looks, whisper under the breath and troll online communities while hiding behind their computers.  Screw 'em.  I have better things to do. 

I know that I need to wrap this post up.  I know you're just as tired/busy as I am most days.  ;-)


Thursday, November 20, 2014

Thank you. No really, thank you.

Many times I use this blog as an outlet for my frustration when it comes to all things autism and how we just don't seem to fit in.  That's not the full picture and I want to set things right.  However, being sleep deprived mom who is often chasing after her Kiddo in his path of chaos, I often don't get the chance to say a proper "thank you" to those who deserve it.  I don't want them to think I wasn't grateful or because I barely got the words out before I was off that I just said them without really meaning it.  Trust me, I did.

To Gino and the pizza place.  Our pizza place.  My husband is a smart man and knows every once and a while I am not going to want to cook.  He's going to say the romantic words, "Let's go out to eat." to me and it will cause me to swoon.  My standards have changed vastly.  It won't be fancy.  It will be at a place that sells soda by the can and pizza by the slice on a paper plate.  But if you sit in the back, a very nice waitress will come over with a menu and crayons for your Kiddo.  She will remember his slice and a side of fries order and a chocolate milk.   The owner will greet the Kiddo by name as soon as we walk in.  They won't bat an eyelash when he sings along to the radio or says his verbal stim du jour ten thousand times in a row.  They never sigh upon seeing us. They smile instead.  The waitress will give the Kiddo one of her aprons because she knows he's fixated on it.  They will scold me when I do come in without him to grab take out, "Where's the Kiddo?  You tell him Gino says Hi!"   I wish the world was filled with Gino's and that everywhere anyone went there was a waitress that would patiently listen to the Kiddo as he placed his order.  Acceptance at it's best with a good calzone to boot.

To the teenage girl at the mall that saw me struggling with Kiddo when he was in full on meltdown mode. I was trying to get him to leave.  He was in tears, screaming.  You walked away from the gaggle of girls and over the door.  You held it open wide and didn't say a word.  You just pitched in.  You could of easily stood with your pals with your mouth agape.  You just saw what needed to be done and it was just not much out of your day or out of your life to do it.  You didn't give me a look of pity.  You didn't give me a look of judgement.  You just helped.  Thank you from the bottom of my heart.  I am so glad to know that there are people like you who just see where they can help and do.

To the lady running the bouncy house at the ballpark.  Who knew the that sound system at the place was going to set the kiddo off?  Like most things with autism, we won't know till we try.  We'll try and salvage the outing as best we can.  Bouncy house for kids?  Put him in.  Maybe that can help.  When you turned to me and said "Lady, he's crying." I really was ready to rip your head off. I knew he was. I curtly replied how he had autism and was just trying to cope.  You then said the words that nearly broke my heart and made me hang my head in shame.  "I figured.  My brother has autism.  I just wanted you to know in case you couldn't see him in there."   You weren't judging.  You were helping me and I couldn't even see it.  I'm was an ass.  Forgive me?

To the countless kids at my son's school.  You see him when we are out and about and you make a point of saying "Hi."  I am always so amazed by this.  Usually the kiddo doesn't reply unless I prompt him.  None of that seems to phase you.  You just kind of know, that's his way.  So many of you volunteer to sit with him and his classmates at lunch or to play games.  You just do it.  No questions asked.  I am amazed by it.  It fills my heart.  My only hope is as you both grow older, you'll still show the same amount of acceptance.  It's one thing at ten but please still be kind in your teen years.  I have hope you will though.

And there are so many more and I know I am forgetting them. I'm sorry.  Thank you for being patient with this absent minded Mama with much on her mind.




Saturday, November 15, 2014

Something scarier than autism

You know what's scarier than an autism diagnosis?

Autism and puberty!

Good gravy, this kiddo is gonna kill me. Seriously, go buy stock in the L'oreal hair dye company. Business is going to good for the next ten years or so. No sooner do I cover my gray does he give me a reason to sprout twenty new screaming white hairs.

First, we are dealing with some growth spurts galore. OK, that I expected and it's not like I haven't dealt with them before. He puts on a pair of pants that he wore just the week before and they look like shorts. I can't help but wonder is he actually having growing pains. It wasn't just a cheesy sitcom from the 80s. It's a real thing. However, like all physical things with him, he can't tell me. I just get to guess. Which, can I just tell you how much fun that is? He usually clues us in on things like stomach upset by barfing across a table in a crowded restaurant. (Yeah, that's a place we can't go back to for like a year.).

Then, he's been getting some pimples on his face. Most of the time he doesn't seem phased by them. Last week however he had one of his nose the size of a volcano and it was PICK,POKE and POP all day long. Except when it did finally pop, he completely freaked out. I had the fun of trying to clean it up and then explain the importance of leaving it be.  As he had picked scabs till they've gotten infected. I'd like to avoid gang green or MRSA if possible.  I know, I'm a Miss FussyPants like that.

Hormones and hands in the pants. (Sounds like a bad emo band name). You might be thinking "Oh my kid is five and already does this. Big deal."  Oh nooooo Honey. You have no idea. It's about to go through the roof. Times ten. Hands in the pants, hands over the pants, hands holding it as he walks, hands grabbing it as he watches TV, hands grabbing other things to put on his junk to check out how that feels. Yeah, all those vibrating toys you bought for sensory input.  Need I say more?

And can we just discuss the fun of dancing the "Mood Swing Mambo"?  Happy,sad,frustrated,pissy,grumpy,hyper, ecstatic and content all happen AT ONCE!  Oh you thought communication issues were hard when they couldn't tell you what Thomas the Tank DVD they wanted on. Just start stocking up on wine, whiskey and or chocolate for yourself now.

I watch the Kiddo often disappear into his room now. Usually to play music or goof around with his iPad.  I'm of the philosophy that as long as I don't smell smoke, I'm not knocking on that door.  I'm just let my little man do what he has to do in there. Mama Fry doesn't want to know.  He always comes out eventually looking for fries.

Saturday, November 8, 2014

Is he or isn't he?

I woke up yesterday and I'm scrolling through Twitter.  I see it's a buzz about comedian Jerry Seinfeld and his autism connection. (If you don't know about this, go Google.  There are about a thousand links to the story)  My first thought was "Incoming!!! Prepared to be Seinfeld'd all day". (That's what we bloggers  do with the latest hot story du jour by the way. Make it a verb. Last week I was Broccoli'd all over the place) 

I slapped it up on my private page and warned other bloggers for the assault. As the autistic Kiddo I live with had no school,  I was off line for a large part of the day. So I didn't see the boiling pot of emotion folks were having over this.  I was a little startled when I was catching up but then I remembered this is the autism online community. We love to argue! OK, passionate discourse sounds nicer.   I understood the divide but at the same time I was all "Meh."  Of course I'm not "Meh" enough to not jot down a few thoughts on the subject. 

"Self diagnosis?!? How can he diagnose himself?  It's not real."  I hear you. However, I know a lot of adults who found out they too were on the spectrum when their kids were getting screened. Through lots of research and time spent with it, they self identify. Some pursue a formal diagnosis but many do not. Why? Cause it's not something they need on paper because they currently don't need accommodations or therapies.  And frankly a lot of us started diagnosing our own kids when we started the journey with them.  We don't know the full story that led him to that point. He may of said it and it could have been edited out for all we know. Sound bites rule the media world. Who knows? 

"If he is he's too high functioning" "High functioning" comes with its own set of problems. They aren't the ones we know in this house but it doesn't make them any less valid.  I'm not about to tell him "Hey Jerry! You're not the right kind of autism."  Aren't we kind of forgetting its a spectrum here? So yeah, if he is, he's still got legit problems. Assuming he actually has it, which we still don't know by the way.  I'm not about tell somebody their feelings aren't important enough because my kid is more autistic than him ergo we have more autism street cred.  

"He doesn't know my autism. Come to my house and see." Well really you could say that to anyone. No one knows the autism you live with till you do. I suspect you could come to my house and be equally surprised by the autism that lives here.  I bet if you had me over I would be too.  That's how this spectrum rolls.


"How could he do stand up?" Easy. Scripts. All his humor is observational. If you're familiar with his show or comedy, most of his routines are rants. Long diatribes of his being baffled by many different social situations. Tiny little details about convention that made no sense to him. His opener line usually being "What's the deal with...?" He took his over thinking and ran with it.  He saw a platform on a stage.  That's cool by me.

 "It reinforces stereotypes about autism being only one way." Well I can't argue with you there. Media loves them some feel good viral stories of autistic kids doing cool things. They're usually all high functioning too. Again, I'm not about to complain to the higher functioning autistic for being noticed or heard by media. Yes, a little more balance would be a good thing.  I cringe every time someone sends me the story about the kid that can draw the entire NYC skyline.  My kiddo can barely write his name, with help. 


"He has a responsibility as a celebrity to..," To what? Be a medical expert? Hell no, he's a freaking comedian. That's what he gets paid to do. Remember when I said a few blog posts ago to "leave science to science."  That applies here. Not listen to the guy that created the legend of the Soup Nazi.  This is when we need to play our part in this and remember the source.  Experience is valid but unless he went to medical school after his TV show wrapped, I'm not looking to this guy for information.

Then my favorite, people worried he was trying to be autistic to get trendy. Holy shit. I had no idea Autism was en vogue this season. Dudes, until a Kardashian claims it, I don't think we have to worry to much about this.  When that happens, I will join you in your outrage.

I'm sure some of you will feel very compelled to leave tons of reasons why I am wrong. Why he is wrong. That's fine by me. I had my say. Now you take your turn. At the end of the day, I really don't give a crap if he is or not. Selfish reasoning, I'm not his IEP advocate. I'm not making his sticker chart or writing social stories for him. I'm sure Jerry will be just fine. No matter what his neurology is.  This isn't my up in arms moment and by next week a study will come out about how it's all the mother's or father's fault that their kid is autistic and this will be old news. 








 









Wednesday, November 5, 2014

Jinx

I am going to ruin this as soon as I click on "publish" but I have to talk about it.  I think, just maybe, the medication switches are starting to work with the Kiddo. 

I know. You are screaming at your smartphone or laptop right now that I am jinxing it.  I know part of me is like "SHUT UP!!!  SAY NOTHING!  YOU"LL SCARE OFF THE CALM!!"  The other part of me is grateful for a chance to exhale and think "OK, so maybe this is gonna work."

As an autism mom, I feel like I am trying contain a thousand of small fires on any given day.  To think that just maybe this will help put out of few is pure joy.  Not just because I'm freaking exhausted of walking around here on eggshells.  I hated seeing my Kiddo so flipping miserable.  It was like a thousand knives stabbed in my heart daily.  It sucks!

Plus, if Kiddo ain't happy, ain't nobody happy.  I mean no one.  Not even the dogs.  We were all walking around not wanting to breath the wrong way for fear of setting this kiddo off.  It's a crappy way to live. 

Monday is when I first noticed just how pleasant he was being.  He asked quite nicely to go outside to our yard after school. I said yes and brought out snack with us.  This seemed to delight him to bits.  He ran laps around the back with one of my dogs.  Dinner was breeze.  (He actually cleaned his plate twice!) Showered and pj's without an issue.  Goofed around a bit and off to bed with a big "I love you". 

Tuesday, more of the same.  He did have speech after school and had his usual "Hit the wall, it's been a long ass day" point of stopping during the session but that's pretty much the norm for him.  It is a long ass day at that point.  But we rallied, I suspect the pizza I picked up on the way home helped and again went to bed with no problems.

Now this morning, Wednesday is our HELL DAY.  A smidge sensory seeking but so much happier than he has been on those mornings.  Tons happier! Despite waking up at 4 freaking AM.  But I sent him off to the bus skipping so maybe, just maybe it will be a good day?  

Please let it be a good day.  I just need a win.  You know what I mean?  Just a little "Wednesday, he was fine" win.  I hate how "hump day" has become the day we dread.

Oh some of you are probably thinking "Well, what's with this day? What's different?"  Yeah, we don't know.  The only possible difference is a gym teacher that is no longer at school but I call bullshit on that one.  The kid has been in early intervention/school since he was two. Do you know how many freaking teachers and therapists have gone off on maternity leave?  Seriously, he's like a fertility idol at this point.  New people all the time all over the place.  He doesn't care.  He never has. 

Either way, I bought a six pack of hard cider.  I'll either celebrate later or cry into it.  Fingers crossed!





Tuesday, October 28, 2014

From A to Z

This week at French Fry Inc. we added another set of letters to the mix.  OCD (Obsessive Compulsive Disorder).  I can't really say I am surprised. This is pretty common with kids with ASD. Yay, we're just like the other cool kids!  We hopped on the ritual bandwagon.

I pretty much felt that these letters were going to be brought up when we went for our annual check in with the developmental pediatrician. Once it was said aloud though by the doctor, well I will admit to feeling a little sad.  It's just another set of letters connected to my kiddo. I'm kind of convinced we're collecting all twenty six letters of the alphabet with this autism life.  All lined up nearly in a row because Hello, autism.

The scripting is controlling his life.  I now see him having to touch everything when he enters and leaves a room. A knocking of his knuckles on the hallway a certain number of times and if he doesn't do it he will circle back and walk down the hall again to get those knocks in.  And let me tell ya, those meltdowns I have seen are starting to make a lot more sense now.  Well at least the triggers to them.  I still don't get why he has to say "Uncle Riiiiiich" in this loud semi growling voice no less than 946 times in a row.

I've always been kind of cool about the stim behaviors. He needs to pace up and down the hall after school for a few minutes? Fine by me.  Have at it. We all have our ways to cope.  It's like some of these behaviors have really amped up and are just taking over his life.  It's kind of breaking my heart when I see him like that.

The doctor suggested another medication and we're going to give it a go. Prozac. Yep, just like his dear old mom. I wonder if I can get it in bulk at Costco. I'm hopeful it will help.  At the same time this is the third medication my kid will have to be on. For some reason, this is really chapping my ass. Three medications. Just to be able to function.  Just to be a ten year old boy.  This is where I sit there and wonder about those folks who say "Autism is a gift.".  Really?  I'm not sure what kind of autism you mean here. The one I'm seeing, yeah I'm not getting the whole wrapped up in a bow thing.

I see my kiddo struggling.  A lot. I love him. Quirks and all. I'm just not a fan of the ones that seem to paralyze him.  That stop him from just being in the moment. Life is pretty awesome and I hate to think he's missing it because he's so wrapped up in anxiety and sadness.

Just picked up the medication. Oh the fun of hunting down the liquid version of it because he still has huge amounts of anxiety over putting a pill anywhere near his mouth, let alone in it.  I see the pharmacy has slapped on warning stickers not to operate heavy machinery until we see how his body reacts to it.  Does the iPad count? Oh and not to drink alcohol.  OK, note to self, my ten year old can't go to happy hour at the bar tonight.

Thank God I know I can have a glass of something tonight.  I'm gonna need it.

Wednesday, October 22, 2014

A few little bits of awesome

It's been an expensive week here at French Fry Inc.  First, the furnace decides it doesn't need to work on a cold Monday morning.  Then, I have to schedule my car to get a big repair done.  Finally, the iPad aka THE LOVE OF MY KIDDO'S LIFE, decided to die.

I'm not going to lie.  I"m barely keeping my head above water but I am prompting myself to remember that while these are problems and legit ones at that, they are also fixable.  Even though we're probably going to eating a lot of Ramen for the next few months.  I'm still going to panic and freak out.  Every now and then I'm going to go hide in my laundry room where my family never goes and play Fat Princess Piece of Cake on my phone and center myself.  I'm going to also list some of the more cooler moments with the Kiddo lately in my head.  That always cheers me up.

1) Yesterday during speech therapy he saw what last Bingo piece he needed to win.  So he tapped into his inner neurotypical 10 year old boy and cheated.  Yep, fixed the game so he could win.  I'm sorry.  I know I shouldn't be laughing at that but dammit that's funny.  What a sneaky son of a gun.  He wasn't subtle about it though.  Did it right in front of the therapist.  No shame.  Just like his Ma!

2) This morning is the dreaded Wednesday.  He hates this day at school. Just can't stand it.  Doesn't like the fact that the gym teacher he loved is no longer there to teach that day like he did last year.  (Selfish teachers and therapists going on with their lives and their careers.  Don't they know they aren't allowed to ever leave till the Kiddo does?)  So what does he try to tell me this morning?  That's it's half day of school and the part that is closed just happens to be the part he hates the most! Isn't that a convenient?  Lying right through his teeth!  That's some problem solving!

3) But my favorite part of the week is strangely during a meltdown. Let me explain.  Sunday the kiddo was bouncing off the walls.  I'm not sure what was going on but he had energy for days.  His impulsive drive was just cranked all the way up.  He decided it would be a really great idea to balance one of our bar stools at the top of a small set of steps and then sit on it.  He then added an extra element of danger to it by then rocking on the stool.  As you can expect this idea did not end well, it ended in tears.  He stumbled down the steps.  Landed on his backside and got a good shock to boot.  All of this happens in the span of like five seconds.  I run to him to make sure he's okay.  He ran and gave me the biggest hug.  Collapsed into my arms crying.  Why is this a big deal?  Because up till now if he hurt himself, he didn't want anyone touching him at all!  He would beat me if I tried.  You know how much that killed me as a Mom?  Like Mom is suppose to swoop right in and hold crying kiddo to my chest and comfort him.  All the sudden now he wants me to do that??  Holy cow Kiddo!  I'm so glad you fell!  I get to go with my instincts for a change. It was really nice.

I hang on to these little moments with him with a white knuckle grip.  Sometimes these little steps are the only things that gets me through a hard day.  Hell, who am I kidding here?  A hard hour!  We've come so freaking far.  Yeah, there's a bazillon miles to go but I have these little bits of awesome to hold to keep me company on the road.  I'm always so fearful that one day the progress will just stop.  I try not to let myself think that way but it's always sitting there in the back of my head.  I often wonder does progress have a shelf life?  God I sure hope it doesn't.

All I know is I'm probably the only parent that's taking their kid out of for a side of fries for lying, cheating and crying.  Good job Kiddo.  You made a bad week good again.