I'm no longer using the word "Grief" when talking about Autism. Here's why.

Ever have a life event that kind of smacks you upside the head and makes you realize you were REALLY wrong about a certain way you viewed something?  Two months ago I attended a wake for a child.  I still think about that little girl and her family daily.  The experience taught me in a way I didn't expect about how I view autism.

I can no longer say I know grief.  I do not.  Not by a long shot.  I know I have written about finding out your child's autism is a grieving process.  I know I have read similar posts talking about mourning the child you thought you had only to discover autism "took the life you thought you had away".  No it didn't.  Not at all.  I know this because although my child is autistic, he is here. He is making a mess.  He is playing with toys. He is singing the flipping "Bird is the Word" song for the 739 time today.

He will need several prompts to finish chewing his food fully so he doesn't gag.  He will need reminding to not tease the dogs. He will be scared if he sees me so much as open the kitchen cabinet with the blender in it.
But he is here.  I can laugh and sing with him.  I can high five him passing in the hall.  I can sneak into his room at night after coming home from a funeral home and kiss the top of his head as he sleeps.

So yeah, life isn't what I had planned but no life is.  Seriously, the life you see others living.  The one you envy, even to them it's not what they expected.  Both good and bad.  Maybe what I feel at times is self pity, frustration or disappointment.   Perhaps a grand combination of all of the above.  For myself,  I know it is NOT grief.  I choose to not use that word anymore in regards to autism and accepting my child's diagnosis.  It's not a grieving process. It's an acceptance process.

It's an insult to compare it to losing a child.  One I won't do anymore.  Or "mourning" because he is still here.  Yes, it's more work on my plate than I ever expected or even wanted.  I am grateful for it because some parents do not have that luxury of complaining because they are actually lost and buried a child.  They are the ones that have the right to grieve, to mourn for a life they can no longer watch and help develop.

I am not saying this anymore.  I'm not asking or declaring you to do the same. All I am asking you to do is hear me out.  Is your child still here?  Then you currently have more riches in your life than others do.  I'm not telling you NOT to be sad or angry or frustrated with your situation.  It would be utter madness for me to even suggest it.  Hell, you don't even have to like it sometimes.  I just know what I felt when I hugged a mother recently who had been preparing herself to accept a lifetime of medical challenges for her daughter only to now greeting us at her child's wake at a funeral home.

I'm not declaring a right or wrong for anyone but me.  Maybe you'll agree or maybe you won't.  I just feel it's important to acknowledge when I was wrong and how I plan to change it.

I can't enjoy progress.

Put me in a time out.  Give me a social story.  I am seriously ridiculous.  My Kiddo has been making some progress and I'm sitting here thinking of all the stuff he still isn't able to do.  What the Hell is the matter with me?  That's stupid right?  Why can't I just enjoy what he can do instead of obsessing on what he can't?

Take for example his last haircut.  Now, we have come a long way from the Wrestlemania event it used to be.  One where I would hear the audible sigh from the salon staff when I called to make an appointment at the one kid's salon in the area that specialized in moving targets.  (Let's just say our picture was up in several shops as Persona Non Grata.) It took a lot of time.  Lots of prompts.  Lots of bribes.  We have finally gotten to that place of "I will tolerate this because I will get a highly motivating reward after."

I mention he needs one while we're out and he's game to it.  So since we are in the shopping plaza where he now gets it done as I am mean and won't take him to the kid's place anymore because he can no longer stuff his 11 year old butt in the race car seat, I throw caution to the wind and walk in with him.  Maybe we'll only have a little wait.  I'll hand him my phone.  We'll script a bit.  We'll get through it.

But apparently that day was "Take your kid to get a haircut" day. I didn't get the memo and the joint was jammed. There is no turning around and leaving with this kiddo because once we say we're doing something, it's carved in autism stone.  Well, looks like it's a teachable moment for him on waiting and we'll bring some autism awareness up in this shop today.  Multitasking! I love it.

However, the gods of fate laughed in my general direction.  Despite a lot of people working and a sign up sheet, no one seemed to understand the concept of who goes next.  Combine this with the general noise of three different tv sets going (Just how many different ESPNs does one need?), the Kiddo starts scripting and making lots of stim noises to cope.  Ain't it something how his coping skill to loud noises is to in fact make even more loud noises himself?

It's not long before all eyes are on us.  When folks think they're being slick by slowly moving away from us, lest they catch the autism. It's viral, dontcha know?  "Just getting a new magazine. Oh I will just sit WAY over here now instead."

I stiffen my spine. Chin up. Tits out and just keep talking to the Kiddo.  Trying to keep him calm. I can't carry him out of here.  We are long past those days.

And I'd be lying if the thought of "Dude if you could do me a solid here, chill your mofo noises a notch.  It's like when I want to use the blender and you hate that noise. The noises you're making are making me a bit batty now."  didn't cross my mind.  Like just this once, just sit there.  Like any other kid.

Eventually we do get called for his turn and he gets his favorite girl cutting it.  He does it like a champ.  He even engages in some appropriate conversation.  We pay. I tip generously.  I am glad to get the heck out of there.

I should just be happy that haircuts aren't a problem anymore.  That's huge!  Yet here I am, pissed off that we can't even wait for a haircut without autism making itself very loudly known.   I hate that.  I hate that I am still not okay with all parts of autism and I hate that I will have these moments all the time.  That I can't even enjoy the big progress moments because I am so hung up on the dopey little ones.

What can I say?  I'm a bit of a holy hot mess that way. ;-)

Lockdown

Once a month like clockwork I receive a text from my son's school that they have performed their monthly lockdown drill.  This text is to inform me that it is just a drill and I have no need to be concerned.

Except that I am.  As this is just another reminder of how much my son's autism impacts every part of his life.  I am scared shitless as I don't think he will be protected and safe during a lockdown procedure and it's by his own doing.

You see, you hear about teachers ushering their students into a closet or restroom.  All sitting silently side by side.  You know what my Kiddo is doing during this?  Talking.  Telling the teachers, staff and students that there is going to be a surprise.  A combination of my son's autism and innocence makes him think they are playing a game of hide and seek or it's a surprise party and they have are going to have fun.  He loud whispers to everyone around him to "BE QUIET!" while not picking up on the fact that he himself needs to be quiet in order to save his own life and others.

And I hate it.  I hate that this is part of his educational experience. I hate that autism and his communication and intellectual issues might be yet another safety risk in his life and the lives of those around him.  Kiddo makes a noise, he jeopardizes every person in the classroom closet with him.  He won't mean to do so but it is the reality of the situation.

My heart broke when his teacher first told me about this.  She didn't seem too fazed by it and from what I can tell, he's not the only kid in class that does this.  No concept of the situation and no idea that this is a drill about saving his own skin. I was told it was a skill they would work on.

Part of me is angry that this even has to be in my kiddo's life.  Like what the ever loving feck is this?  Don't we have enough on our plates?  Now I have this concern to worry about as well.  That he will potentially give away a hiding spot to those looking to do harm to himself and others. I thought working on life skills meant learning how to live independently.  Now they include trying to stay alive.

I hope like Hell that I will never even have to think this could be a reality but I can't help thinking about it when that text message announcement comes through my phone once a month.

I don't have a solution.  I don't even have a suggestion.  It's just another complication with autism involved and one that you never even think about it until it's in front of you.

We're All Alright!

This week I had one of the most amazing and surreal experiences of my life.  It took me till I was 41 years old but I finally got to utter the words "I'm with the band." and hang out in a dressing room at a Cheap Trick concert.

This little blog of mine somehow found it's way to Alison Petersson, wife of Tom Petersson. Rock legend bass player of Cheap Trick and inventor of the 12 string bass.  They too have a son with autism.  Just like me.  They also love the power of music therapy, just like me.  They want to bring it to the masses.  They want to empower parents.  Just like me.  So clearly, I like these people.  A lot.  (If you want to check out more about their Rock Your Speech program: /http://rockyourspeech.com/)

And because Cheap Trick is on tour and had a Jersey date, Alison invited me to come to the concert.  Like I'd say no? And that's when stuff got weird but amazing weird. Like so not my life but I like it weird.  Because not only did I go to the show.  I got to go backstage.  I got to go ON the stage before the concert.  Check out all their gear.  Take a billion pictures.  Hold Tom's bass which I swear weighs 100 pounds and I had to wonder if he goes to the chiropractor after every show because DAMN that thing was heavy!

I had brought along with me a fellow autism mom and music lover. At one point I turned to her and said "I started my day stripping my kiddo's bed because he peed through the sheets. How is this happening?"

And she replied "Hey! Me too!  Autism Mom high five!" and we laughed and slapped hands.

"Hey. Let's just hang out in the dressing room before the show."  Well sure cause that's my life now.  Like I do that all the time. Tonight, listening to the lead singer warm up and Tom giving a couple picks to my pal whose son plays guitar.  Next week, back to school night and listen to the principal give the same speech he's given for the past 6 years.   Man, next week is going to be BORING!

 I got to meet their awesome kids. Their son was just chilling on his lap top, watching YouTube clips of video game bowling.  And just like that, I was back in my autism comfort zone.  I  knew back at my house, my Kiddo was probably doing the same thing.  Chilling on YouTube. :-)  He was also happy to show us the set list and count the songs to his favorite ones. (Four more to "Dream Police"!)  Something my Kiddo loves to do when listening to Cd's at home.   And Tom is about to go on and I'm thinking "Dude, your dad's work is to rock!" and his son is all "Yeah, I want popcorn."   Which cracked me up again thinking about my son. He's just at his Dad's "office" so to speak.  When we visit my husband at his job, Kiddo HAS to go to the office kitchen and get some water from the water cooler.

In case you have visions of debauchery backstage at a rock concert, sorry to burst your bubble there.  You know we got that kid some popcorn because who doesn't love popcorn? But we had to "First, put on shoes. Then, popcorn." cause we live that First/Then life Fries.  Rock stars or not. :-)

And we rocked out.  Dancing the whole time.  Counting the songs down with Alison and her son till Dream Police played.  Making sure he enough popcorn.  And when he had enough, his mom made a sensory exit.  What member of Team Quirky hasn't done that?  You got to know when to hold 'em and know when to fold 'em.

Tom and Alison, I can't thank you enough for a night to remember.  It was both exciting and new yet very familiar.  Hit me up next time you're in Jersey.  Thanks for reminding me that "We're all alright."

To the Presidential Candidates Bringing Up Autism in the Debates

Dear So and So who wants my vote,

Hello! I see you’re trying to court a rapidly growing community. Smart move seeing how large the autism population and those who love and support them has grown. No debating with you on that one. This is more than just a special interest group. You clearly see we want changes, and we make that known at the polls.

Here’s the thing. (You knew that was coming. Sit down, Sir and/or Madam.) You think you know what it is we all want. It’s not as simple as you or your people are leading you to believe. Lesson one with autism: it’s never a simple thing.

Apparently, I was suppose to fall over or do backflips because autism was mentioned during the last Republican candidates’ debate. Did you get my attention? Yes, but not in the way you wanted. All I heard was the same stuff that has been said far too often. The big old vaccine debate gets tossed around and lots of scary words like “epidemic” are bellowed from the podium. Cue the big applause from the audience. 

I’m not applauding a single one of those candidates for talking about autism. Why? Simply because they seem to forget time and time again that all these autistic kids they love to talk about will grow up. Yes Sir or Madam, these kids age! I know. It’s amazing how they grow taller and bigger! I’ve seen it with my very own eyes as my 11-year-old son puts on a pair of jeans that are now three inches too short. 

Candidates, just what are you going to do for these autistic children you love to talk about? As much as I joke about how I can’t die and I have to live forever for my son, let’s face reality. Someday, I will. Who will care for my adult child? Will my son be given the chance to have meaningful employment? Will he have access to proper medical care? Knock on wood, we have been lucky on the health front with our kid, but I know many more who have “autism and…” such as epilepsy, heart issues, diabetes, etc. What about them?

Often I see the government slash social services budgets to bits, citing welfare and Medicaid reform. Did you know our kids, the ones you love to talk about when you’re trying to get a vote, are the very ones who need it? You want me to be impressed you’re even bringing up autism. Impress me more by remembering how much our population depends on these programs you look to trim far too much. 

It’s great you’re talking about our kids. Don’t get me wrong there. Education and supports are so vital to our children, especially in the early years. Just don’t stop the conversation at “children.” Let’s expand that to “people.” Call me when you have some presentations to share about providing long term health coverage, supports, employment and appropriate housing for autistic adults who need it. Then I’ll know you’re really thinking about our kids. 

Be careful when you go to throw out what you think is a buzzword or a good sound bite. We’re listening, and we’re voting.

This piece was originally run on the site, The Mighty. (http://themighty.com/2015/09/to-the-presidential-candidates-bringing-up-autism-in-the-debates/?utm_source=Facebook&utm_medium=Mighty_Page&utm_campaign=Facebook_Page)

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Will they always be so kind?

While waiting for my Kiddo come out of speech, I see a boy come out of his session and greet his younger brother.  Their mom is chatting with the therapist.  The younger boy takes the older by the hand to get his shoes.  (Where we go, the kids take their shoes off before they go into the PT/OT gym.) The older boy sits and puts them on but stops short of tying them.   It's then I notice the younger brother sit down next time him and starts to tie them for him.  He ties one and then the older brother tries to do the other.  The younger one waits but eventually stops him and completes it himself.  All of this happened without a word exchanged between the two.  It's clear to me this isn't the first time the younger child has had to be the "little big brother".   I am struck by the kindness of this little guy.  As a mom to an only child, I can't help but wonder if the Kiddo had a sibling, would they always be this kind?

Eventually, the Kiddo comes out of his appointment and I am distracted from this scene.  Kiddo gets the slip on sneakers I purposely buy because we have long given up independent shoe tying as a goal.  I chat with his therapist and we make our way out.  

"Do the work.  Get the pizza." says the Kiddo. 

"Yep.  You did a good job today.  You earned pizza." and I drive him to the local pizza shop.
  

I prompt him to order.  The gal behind the counter has come to know him and is wonderfully patient.  She has even offered to buy him an Italian ice from time to time and wasn't surprised when I told her he wasn't a fan of it as his eating habits are a tad "quirky."  She smiled and said "Yeah, my sister too." and with a head nod I knew she was on #TeamQuirky too. I've been a loyal customer there ever since.  She's older than that young boy I just saw and here she is, every week, being so kind to us.  It fills me with hope. 

We turn around when we hear a girl's voice squeak up "Hi Kiddo!!!" It's a younger girl from my son's school.  She seems very happy to see him and the Kiddo is hoping up and down flapping so I am guessing the feeling is mutual.  We run into lots of kids who go to his school.  They all know him.  They all approach him to say "Hello".  It's like they know he won't be the one to make the first social move and they are totally cool with being the one to do it.  They are always so kind to him. 

And that's what scares me.  Will they always be that kind?  That understanding?  That patient, as they grow older.  The middle school years are approaching at a lighting pace.  Right now, he's in that tiny elementary school bubble.  They all know him.  When they all go over to the middle school, will they look out for him?  Will they even say "Hi!" to him?  Four schools go into one middle school.  That's A LOT of new kids that haven't grown up with him.  Will those students simply introduce him as "Kiddo" to all these new students around him?  Will they be kind and pave that way for some new folks to see what an awesome kid he is? 

This is where I hope all this autism awareness and acceptance is rubbing off on people and hopefully trickling down to their kids.  I have hope and I see it in sparks all over the place.  We just need to keep it up.  

My Love/Hate Relationship with YouTube

I'm not sure who invented YouTube but I wouldn't be surprised at all if that person was a tad on the Spectrum.  To my ASD son, you are a hero.  To me, you are my nemesis.

It starts so innocently.  As a parent you are desperate for ANYTHING that can hold your kid's attention longer than a nanosecond.  You just want to see a happy reaction.  You crave smiles from your child like an addict jonesing for their next hit.  You or your partner thinks "Hey, they really get a kick out of that Empire Carpet commercial. (*sings* 800-588-2300 EMPIRE! Today.)  Let me pull it up on my phone to get them to smile/not scream/distract at this moment."

And that my friends, starts you down the rabbit hole.  There is no turning back.  There is no gate way drug to YouTube.  There's no experimenting.  It's just BAM! ALL YOUTUBE! All the mofo time. At least in our experience.

I do love the fact that it brings my son a lot of joy to find clips of things that he adores. If it soothes him after a long day of school to watch the Sha Boom cruising scene from Disney's "Cars" eighty times in a row, so be it. It's giving him exactly what he needs at the moment he needs it most.

I love it for the distraction/time killing it provides when we are out in a challenging situation. Oh, they're out of fries right now and we need to wait three minutes while they cook a fresh batch? If you are an autism parent you understand exactly how 180 seconds can feel like an eternity.  Here's my phone Kiddo.  I look forward to wiping the chicken nugget grease off of it later.

But lately I've been hating it with the white hot passion of a thousand burning suns.  Why? Because my sweet baby boy child has become an tween age jerk and gets his kicks off watching clips of other kids having meltdowns.  Yep, my autistic kiddo has found clips of other autistic kiddos and is highly amused by them.  It's like autism on autism crime in my opinion.  Yes, this is classic 11 years old typical jerkiness. I've been around enough 11 years olds to know this is typical behavior. So, yay! Milestone met! I think.  Every time I catch him watching it I make him turn it off and I am forced to repeat the same conversation of "That child is having a hard time.  You know what that is like  We do not watch that and giggle. It is not funny."

I have to wonder WHY would you tape and upload the worse moments of someone's life.  That someone being your KID!  Seriously, wtf folks who do that?  That's not raising awareness.  That's just making me aware you are an attention seeking asshole.  That's going to be online forever, following your kid around.  Oh you'll delete it? Great but I bet it's already been copied and uploaded elsewhere by someone else who gets a great kick out of the cyber traffic it drives to their site so all the folks who don't know what they are looking at can wax righteous about how all that kid needs is some discipline and a spanking and a belt and Yadda yadda yadda.

You want your kids to have friends right?  We all strive for that.  Can you imagine your child's school mates finding that?  Or teachers, or therapists or possible employers.  All the people that MIGHT have given them the chance now see them at their worst.  I'm thinking that's NOT going to help in the social relationships. Nor does it help my ASD child to see it.  He loves to recreate it.  He scripts from it!  He thinks "It made me laugh so I bet it will be a crowd pleaser."  I assure you, it is not.

As you can imagine, I'm kind of glad he's back in school right now because it's distracted him from wanting to watch them.  I'm hoping with a lot of prompting and redirecting on my part, we'll get past this phase and as my husband likes to say "Find an ever more annoying stim/behavior to deal with." :-)

Spoiler alert! He always does!