Not enough credit.

This is a series of posts that I will be writing regarding our 6 day stay at Disney World in Florida. This is the first time we have gone on vacation in two years and it was emotional, inspiring and educational to say the very least. I hope you enjoy them.

Not Enough Credit.

I freely admit to planning for the very worst. I am ashamed to be honest. Guilt nags me even now, even after so very few of the disasters I predicted barely came to pass. I was worried. I fretted. I down and out internally freaked out for weeks before and every minute of every day we were gone. What was I thinking? He would never survive. It would all be too much, too overloud, overbright. I knew my own irritation with pushing through heavy crowds and magnified that a million thousand hundred fold imagining how Max would feel; Crowded, suffocated, trapped.

A week at Disney World with four neuro-typicals and a kid on the spectrum. What the hell was I thinking?

When I booked the trip way back in August I didn’t know I had an Autistic child. It had been nearly two years since we had had a vacation. We decided to cut down on holiday shopping, pay for it in advance and give our kids a great memory before we left Florida. It was a good plan and one I hadn’t wanted to break after the diagnosis came through. We all needed it and the kids had already been looking forward to it for months.

I kept the plans but started making new ones. I would reserve the right to head back to the hotel any time Max became overwhelmed. I’d sacrifice my vacation to give Max what he needed. We bought a new stroller, one where he could be higher up with a large canopy to block out as much as possible. I bought a carrier and practiced wearing him on my back, giving him another secure place to be if things got too much. I packed his own bowl and spoon. Food he was familiar with, his own toys and movies.

I had everything prepared for Meltdowns, Tantrums and Overwhelm. All the difficulties that I have experienced I projected them all happening every second of every minute of every day of our trip. I had very little hope things would go smoothly. And Max threw me for another loop.

Max, bacon and Pooh.

There are a hundred moments of every day where this little boy astounds me and I am ashamed to admit that it is because I don’t give him enough credit. He is so smart. You can see it in his milk chocolate eyes, the perception, the intelligence. He wants to be good, compliant, reasonable. And sometimes life just is overwhelming. This wasn’t one of those times.

Max on a "leash". The absolute best invention.

We transitioned on and off rides with a great deal of patience and ease, more even than the complaining, irritated adults that surrounded us. Waiting in line was a bit difficult as it was hard for him to understand that yes, the boat was right there but no, we couldn’t get on it. He agreed to wear the backpack harness and or ride in the back carrier, he used a true point to tell me which he wanted. He talked more while we were there, he said bus and pooh very clearly. He said “hoon” (balloon) over and over and at the appropriate times. We had a hard time understanding why we couldn’t just take whatever we saw that we wanted and did cry and scream at times.

But that is normal for any other three year old. THAT IS NORMAL!

Sometimes it’s hard for me to untangle the behaviors that are “Autism” and those that are “Three years old”. We were at theme parks for four days and he acted Normal.* Max is capable of so much. He is so smart and funny even if he doesn’t say a word about it. I need to remember that. I need to remember that even though he is different there is so much more to him than Autism.

It changes nothing. It changes everything.

Autism. It’s just one word. We can discuss Autism all day long, the signs and symptoms, if it’s environmental, genetic or both. If it can be treated or cured or just left to be. If diet, drugs or therapy will help. We can talk about support groups, funding, public education and screening.  We can debate the history, progression and societal impact. We can evaluate the merits of weighted blankets, melatonin and communication devices. Or hash out IEP’s and treatment plans.

Whether used as a noun, an adjective or a verb, it’s just a single word but when applied to a person it becomes so much more.

It becomes a child, partner, mother, father, neighbor, student, cousin, friend.

It becomes my child.

And in that sense, we can still talk all day long but there would be a new spin on things. Because Max, isn’t just Max anymore. Max is autistic. Max becomes “my autistic child”. “My child with ASD.” Because in order to understand Max you need to understand autism. And in order to understand my life you need to understand autism. And if you don’t, we can have that all day long talk, I’ll even bring the coffee, but it will be for nothing.

Everyone tells me that this diagnosis changes nothing. That Max is still Max and in that I agree. He is still my smart, funny little boy. Still my last child and by default my baby. He’s the one that takes little shuffling baby steps away and looks out of the corner of his eyes when he knows he’s in trouble. The one that raises his eyebrows at new things in an “I don’t really think so” way, even when he refuses to look at you. The one that strips as soon as his foot hits the house floor and sometimes sooner. The one that fidgets sitting next to you trying to contort his little body to mimic your exact position. It’s endearing, and makes me laugh. It’s also Autistic.

And everyone that I hear those words from, that it changes nothing, doesn’t have a child on the spectrum.

In a way it really doesn‘t change anything and in an even bigger way it changes everything.

It changes our days. Some days we have therapy, NT kids don’t usually have that. It changes how I deal with him. It changes how his siblings interact with him. How I have to question whether this is typical 3 year old behavior or if it’s his autism and he just can’t help it. I have to second and third guess why he’s doing what ever it is that is causing him to “misbehave” because he can’t tell me. I have to guess at what is making him shriek at the top of his lungs over and over again. I have to ignore the stares from onlookers while we’re out and tip toe around snarky comments half whispered from the onlookers that have big mouths. If you’re an ASD mom you know the ones, the ‘whispers’ that are loud enough for you to hear even over the shrieks. The things they want to say to you but are too scared to do it to your face.

And then the comments that you don’t hear, the ones after you or they leave but that you can see in their eyes if you ever meet again.

It changes relationships with peers, friends, relatives. It changes how you deal with insurance companies, vacations and schools. Your future is different because you need a fail safe plan if your ASD kid never becomes independent and you die. You need alternative means to communicate if they never speak. It changes sleeping arrangements, grocery shopping, clothes. It changes how we evaluate “safe” places and when and where we can do things, because sometimes, somethings just aren’t going to work for my autistic child.

It means that I spend an enormous amount of my time researching and learning how to care for my son. It means that I have less time for everyone else. It means that if I want something for him I have to go out and get it because no one is going to do it for me. It means that I get to talk about autism all the time to people that couldn’t give a flip so that maybe when they want to give “that look” or whisper when they see another ASD kid out there maybe they’ll think twice. It means the first thing I get to do when we move is look for ASD doctors and therapists in addition to horse back lessons and ballet for the NT kids. That the baby sitter I need to hire can’t be a flaky teenager but someone actually qualified to deal with ASD children or be willing to learn. It changes how much money we have and where the money we have goes. It means that other might have to change how they deal with us, coming here instead of us going there, not getting bothered when we don’t call or realizing that I’m not being unthoughtful if I forget something but that my thoughts are just too full. And listening to me use the word “autism” more than once in a conversation and not getting annoyed because, guess what? I’m an autism mom, now. It changes who I am.

Ignoring it isn’t going to change anything though. Telling me he might grow out of it or making ignorant comments about his development isn’t going to help. You can pray and hope and wish all you want, and by all means, please keep my kid in yours if you don’t mind. But don’t tell me it changes nothing because all you’re doing is making me feel that my feelings are petty, that all of these changes I have to make are meaningless, that I don’t have a right to my level of stress or helplessness or loneliness or overwhelm. That dealing with Autism isn’t a big deal and it tells me I can’t count on your support by belittling the enormous changes I actually DO have to face.

And for the simple fact that you’re wrong.

Lovies

There seems to be a fine line, invisible and intangible, that forms the barrier between “regular” children and Autistic ones. One that you can feel through your whole body the closer you get to that line. And when you stand, straddling it, dividing attention between the sides, your whole body thrums with the nervous energy of it.

Though the children on both sides look the same, they’re different. As I go through each day with one foot in both spaces, I am overwhelmed.

It’s that line that dictates what is okay and what is not. On the “regular” side we look at a child that is obsessed with dolls, homemaking, dress-up and think they’re just “girly” there is nothing wrong with their specified interests. Oh, they’ll go play cars with their brother or Legos and it doesn’t really matter that they make the cars into mommies and babies or the Legos into a dollhouse, they’re still playing, expanding.

Then you look across the line at the children obsessed with letters, things with wheels or motors, blocks. And the obsession that looks so much the same is very, very different. A block can only stack it can never be a car. A car is a car it will never be a mommy. If a sister needs someone to make baby noises for their doll or throw the fake baby a birthday party, well, that’s not in the allowable group of toys. Dolls are shunned, physically removed from the play area, they are not invited to the playdate.

This is one of the first things we noticed with Max. His inability or refusal for expanding his play. He takes the girl’s plastic dolls out of the bath when it’s his turn, they’re not allowed even on the rim of the tub. Tubs are for pouring only.

We try to get him interested in soft toys, “oh! Hug the baby Max! This is your puppy. Puppies say ‘Woof!'” And Max looks at me with skepticism in his big brown eyes, the ones that say “You are insane, aren’t you.” but he takes the baby from my outstretched hand. My heart soars for just a moment Will he hug it? Maybe he’ll hug it this time!? only to crash to the ground a moment later when he throws it out the bedroom, slams the door shut behind it and claps.

And still I push for that diversity in play no matter how many times I fall to the hard ground, battered and bruised I pick myself and the puppy back up and try again. Because that difference means there’s more to this than just a dislike, there’s an inability. It is what we will start working on with his additional therapies start. It is something that marks him for a place across the line.

And then there was this morning. This morning I didn’t crash. This morning Max took the stuffed toy cat from his sister and hugged it. He made a kiss noise and crushed it to him. We grabbed his stuffed elephant, the one my mom made him for Halloween in lieu of candy and he hugged that one, too. He imitated his sister gently patting the animal’s back. He swapped toys with her and hugged some more before returning to “his”.

I soared. Bedhead and only a few sips of coffee, still in my pj’s I soared above that line. For a few minutes everything was right with the world. And when he was done with the doll he didn’t throw it and I didn’t crash to the ground.

This time I floated down.

 

He made her cry

The little girl’s cries were nearly as loud as Max’s screams. She hid her face in her mother’s leg, sobbing. Her four year old words stung my heart even though she didn’t mean them to. “The little boy is yelling at me. Why is he yelling at me?” I tried to quiet Max but he needed to tell me something.

Except the only way he can is by making loud noises at the top of his lungs. Sometimes he points but today, the bright lights and colors of the mall were just too much for him. “He’s not misbehaving.” I wanted to say “This is just the way he talks.” But where Max’s words come out overloud, mine were caught in the silence of my throat.

I had only wanted to take him out to holiday shop. My oldest daughter, Olivia at my side doing her best to figure out what it was he wanted. She gets him. She doesn’t look at the boy, straining in his stroller to get to whatever it is he needs or wants and think he’s being mean to her. It’s just the way he is and she accepts it.

Sometimes we forget that loud voice that doesn’t form true words can be so very jarring. To be honest, it wasn’t much louder than the ambiance of the Mall; the overhead music paired with the children’s TV show playing in the store, the sounds of screaming children just outside at the inside playground, the people loudly divulging their personal business on cell phones and the store attendants yelling back and forth through the store as they discussed the newest display in which we were fully submerged, knee high in sprawling boxes.

It was chaos plain and simple and Max had had enough.

I tried to hurry and pick out my purchases still listening to the mother console her child while I felt her eyes across the rack shooting daggers at me. “It’s not his fault.” I wanted to say and defensively add, “She’s not even near him.” but I’m new to this diagnosis and for the past three years I’ve sheepishly gone about my business, ushering Max out of stores as quickly as possible, dropping armloads of purchases down on random counters just to relieve myself of the snooty stares from other patrons. I haven’t found my voice yet when I’m out and getting glares of disapproval from people that think my son is just being bad.

I want to shout at them “It’s the florescent lights! It’s the freakish Santa display! It’s the fifty thousand twinkling lights that line every aisle, the loud sounds from motion activated toys, the six dozen TV’s that stretch the entire height of the wall, the whatever overstimulating thing competing with every other overstimulating thing.” But I can’t. I don’t.

I just quietly do my best to placate my son and move away as quickly as possible. Do my best to ignore the haughty looks.

Before I didn’t understand. I thought Max was “a handful” I waited for the day he’d “grow out of it” when I could go to the store and have him be okay in a shopping cart, to ask me for something instead of scream. To walk beside me, hand in hand without being gripped by white terror that he’ll bolt. We stayed at home away from the stares, the rude glares from mother bears who’s child cries because Max is over loud. Away from the danger and over stimulation.

Other than therapy and the grocery store where he allowed himself to be buckled into the rocketship shopping cart, he was effectively house bound. I’m trying to change that.

I shut my eyes, tears pricking behind the lids as I made my way to the counter. Max yelling, reaching to touch the sparkling red and gold Christmas tree just above his head. The arched brow of the checkout girl at a particularly loud and long outburst nearly sent the barely withheld drops over the edge. I’m not comfortable yet saying Max is Autistic in public. I’m not comfortable explaining away his behavior as a disability. I don’t think strangers get the right to invade my privacy because their public phone call is being disturbed by a child trying to cope with excess. I look at my oldest daughter as she tries and fails to talk to her brother. He never looks at her, never responds to her soothing voice as she coos to him, doesn’t turn when she asks for a hug or tries to show him a toy.

She never flinches when he screams long and loud right near her ear showing more patience than 99% of the adults we meet. I hug her as we leave, her present tucked in the bottom of the bag, the one she didn’t notice me buy because she was being a good big sister. I wish there was more I could give her, some way to show how much I appreciate her selflessness.

The mother and the little girl pass us on our way out “Why is he yelling at me?” She wimpers again.

Olivia turns, looks her straight in the eye and says “He’s not yelling at you, that’s just the way he talks.”

The tears return for a different reason. I hold her hand as we leave and think it might not be so hard to find my voice after all.