What does normal look like anyway?

Here's an article a friend of mine sent to me. I related to each word. I think something important to keep in mind is that by saying a child looks "normal" or that "nothing seems wrong with them" is that this implies that autism is something that can be wrong about somebody. It makes life harder for us as Harrison's family, yes, and most certainly makes life harder for Harrison. His brain is made differently, that's it, not less.

Sensory Overload

This kind of thing always interests me. It's a simulation of sensory overload and what it might feel like to someone with ASD.

When Harrison was very little these kinds of things were very hard for him. He wouldn't meltdown, he would generally tune out. If we went on a fun family outing he would just stare straight ahead and not respond to communication.  I had an Autism bucket list of sorts when he was young. Many of the items on the list were things that were difficult for him because of the sensory processing. Going to Disney World and saying "Look! It's the castle." Enjoying himself at a Japanese Hibachi restaurant. Getting a haircut. Oh my. I could write a book about haircuts.

Something else to consider is that children with ASD often struggle with social cues and many struggle with language. Harrison falls more into the latter category. I think his whole life is like if we moved to Mexico. We could sort of figure out what people were saying but we wouldn't know exactly every word they said. Imagine how hard it would be to puzzle the language together all the time.

Then add the above sensory simulation to the mix.

10 Things You Should Know

I just ran into this video online and found it really helpful. It's always neat to hear a grown individual on the spectrum talk about what it's like for them. The point he makes about everyone with ASD being different is a very good one.

In the Same Club

I'm leaving Target. A woman looks very familiar. We are both eyeing each other. I break the silence. "You look familiar."

"Do you work at Otis?" she says.

"Nope."

"Do you have a child who has autism?"

"Yes..." I say hesitantly.

"Oh ok. That's it. We're in the same club."

Not gonna lie... being an autism mom is very lonely.

When other moms get together we compare notes. We stand around, we talk about how Child A did on the ball field, how Child B did during a recent school event, how Child C is doing on homework. I will find myself in these situations. In the hope of wanting to fit in, I will excitedly say "Harrison responded appropriately to a question last night!" The moms turn to look at me, like I am growing vines from my ears. My child's triumphs are different from others. I am not in this club.

One of the hardest things for my family is not the day to day stuff. Harrison's very mildly on the spectrum. He doesn't have meltdowns. He is affectionate. He generally communicates well though you sort of have to know what he's talking about to know what he's talking about.

That's not what keeps me up at night. I worry about him as an adult. Will he be happy? Will he graduate from college with a degree he's passionate about? Will I dance with my son at his wedding? Will I one day be a grandmother?

Will I be in the club?

I once went to an Autism Family Support Group meeting. Where I met the lady I saw at Target. I listened to heart wrenching stories about how Child A didn't potty train until age 6, Child B goes to some type of speech or physical therapy every day after school, Child C didn't say 'I love you' until four years old. I am not in this club.

Thankfully of course. But with a guilty heart. Something akin to survivor's guilt. One of my best friends says it's like being a skinny girl at a weight watchers meeting.

Tonight we went to Pet Smart. As we got out of the car Harrison jumped and screamed at the top of his lungs "I'm so excited to go to Pet Smart." Not the social norm but harmless. He's so excited about life. Beside us a woman and what I assume is her daughter got out of the car. Huge smile on her face. Pretty sure she was not neurotypical. She asked about Harrison and Ellie and hold old they were. She says they're cute. The mom hurries her inside.

Fast forward to checkout. The girl and her mom bought a bird. She talks to Harrison again. She opens her arms for a hug and Harrison happily obliges. As they are leaving the mom and I meet eyes. We are in the same club.

Parenthood

My favorite show is ending tonight. Anyone who knows me can say I watch about 4 shows. That's it. I can't keep up with much else. So when your favorite show out of 4 ends it's kind of heartbreaking.

There are two kinds of people. People who are completely devoted to Parenthood and people who aren't a fan/ haven't seen it. There's no in between with this show.

This family has become my family. I have triumphed and grieved with them. In many ways they have made me appreciate my own family more. I am able to be a better daughter and daughter in law because of that show.

And they're leaving me.

The first time I watched I was home alone with Ellie. She was very small and I was trying to find something on Netflix. This show caught my eye. I loved the movie from the 80's and figured I'd give it a shot. A few scenes in I realized they had kept many of the same plot points from the movie. There is the patriarch and matriarch (Zeek and Camille). Their four children are Adam, Sarah, Crosby, and Julia. And of course they all have kids and all lead very different lives.

In the movie the Adam character's son has special needs but they never elaborate on what that might be. In the pilot episode of Parenthood they realize Adam's son isn't typically developed. Over the next few episodes his son Max is diagnosed with Asperger's Syndrome, a form of high functioning autism. What is the difference between Max and Harrison?

Fun fact, if you look closely you'll noticed the classroom scenes in the video were in a Montessori classroom. 

Basically children with Asperger's Syndrome don't typically have a speech delay and are generally highly functioning. Children with classic Autism have the speech delay, impaired social skills, and can range in function. Harrison of course is very high functioning. It's interesting to note that with the DMS-5 many of these classifications changed.

Still there were parallels. I felt the pain of Adam and Christina. The helplessness. The feeling that your child is trapped within himself. And their journey has been my journey. Max is older than Harrison so I've been able to see a few years into the future every year.

And tonight it ends. Max just started High School. But what will happen beyond then? I've learned about how to talk to my child on the spectrum about over coming fears, disappointment, first love, puberty. They are leaving me with uncharted territory.

It's been so therapeutic to see a family on TV navigate these struggles. I will very much miss this portrayal.

Counting

Sometimes the memory/ counting/ etc. obsession can be a really sweet thing. Tonight he says he's counting how many times we've kissed each other in his lifetime. He says we're up to 10,008. In case you were keeping score at home.

Intervention

"I just don't think it's good for you honey. When you're on it, you're a different person. It's not fun for you anymore. I think you need to take some time off. It's just not good for your brain."

My seven year old dissolved into a puddle of tears. We were taking away his one true love... Mario.

To be fair we weren't really taking it away. We were just putting more restrictions on his game play.

Harrison's love of Mario started innocently enough. About a year and a half ago he could barely get the character on screen to walk and jump at the same time. We would turn on our game system (an 8 year old Wii) for about half an hour a month, we'd have a little family fun, and then turn it off. Then about a year ago we started playing a bit more, working toward earning stars in Mario 64. Before I knew it he was getting good. Really good. Like "Ok how'd he figure out he can use that portal?" good.

Then he started to draw Mario. He dressed up as Mario for Halloween. He made Mario Legos. He played Mario at the playground. I was starting to get concerned but he was only playing a few nights a week. We'd time him for half an hour at a time. Responsible parent right? However some nights it didn't seem fun for him. The levels were getting hard and he was starting to blow up if he messed up. We'd turn it off. We'd talk about how we can't scream when we're angry. He'd be upset a while and then try again the next night.

One of Harrison's Mario Comics. Drawn 1/27/2015

Then at Christmas he got a Wii U. The whole family was excited. We can play more cooperative games now. He loved it. He wasn't getting as angry. Game time wasn't a stressful thing.

He was making more and more little comic books. Adorable hand drawn books he made himself. We told ourselves it could be a good thing. He was writing! He was being creative!  However, he wasn't touching his other Christmas presents. He was asking about the geographic location of the Mushroom Kingdom. He was talking about Mario when others around him were having a conversation about something else. He was.... only answering to the name Mario?

Huh?

When did we go from casually liking something to it completely consuming him? I tried to think about the last time he drew Captain Underpants or played with Star Wars Legos. When is that last time he asked to watch TV?

I did a little research into video games and autism and found this article. Basically children on the spectrum tend to become addicted to video games and then children who play role playing games are more likely to become defiant and disobedient. I thought about some behaviors we had been noticing and while I wouldn't say for a second he was being disobedient, he was definitely not his 100% sweet self.

I knew something had to be done. I knew we had to start to limit his game play even more. Not just less time but only on the weekends when his brain could handle the stimulation. And I knew we had to be honest and up front with him.

This brings us back to the conversation from the beginning of this post. He was positively devastated. As a parent it's easier to make those decisions when a kid is in trouble. Bad grades? No more video games. Got in trouble at school? No more video games. This was a little more of a gray area. It didn't slow me down but it made it a more difficult conversation to have. Made his pain harder.

This is day two of our detox and so far so good. I'm already noticing a more relaxed demeanor at night, less Mario talk, and better language use. Mario is something he will always love but for now he needs to love it in small, controlled doses.

Princess Peach Ellie, Tinkerbell Alex (Godsister), and Mario Harrison

Welcome to Our Magical Life

The title of my blog is meant in some ways to be ironic. But not.

Let me explain.

My son is on the autism spectrum. Three years later I still struggle to say he has autism or he is autistic. This is partially because while I am saying the words to you a large part of me still chokes on them. I'm not sure if it's denial or stubborn optimism. It could be because it truly is a spectrum. And where he is on that spectrum changes from day to day. In our house we say he has Austism days and autism days. Honestly most days are good and for that I am grateful. The tough days can be a glass of cold water thrown in your face. An occasional reminder of the challenges he faces.

So one could say our lives are far from magical.

Yet somehow, it is. Mostly because he is.

Harrison is truly an amazing gift. It's like an alien from Planet Happypants has decided to grace Earth with his presence. He is one of the kindest, funniest people I've met in my life. He can be seemingly oblivious to what's happening around him and then say something so profound and insightful you would think he had ESP.  He loves his family, especially his little sister. He calls his dog his son and his cat his girlfriend. He loves Disney. He loves to draw. He has an amazing memory. It snowed two days shy of a year ago and I'm half expecting him to ask why it isn't snowing in a few days. He gets interested in the funniest things. Most little boys want to learn about lions or dinosaurs. He wants to learn about Malayan Tapirs.

Of course he has his dark moments. Communication is a struggle. He moves around a lot. When we have to have a serious conversation with him, he gets a fear in his eyes. Like a cornered animal. It's hard for him to understand the words. My child gets lost. I try to find him behind those shining blue eyes. School is hard tricky. He thinks hard means bad. We can't say hard. He loves his class and his teachers but it's a lot of work for someone so delicately trying to make sense of the world. He calls a shelf a shelter and at school he says he learns ledisons. He comes home and disappears to his room to make comic books. Disappears into himself. He acts different from the other kids and now that he's older it's more obvious. Harder in some ways and easier in others.

Obviously magic comes with a price.

So from time to time I may talk about our life with Harrison. I may also talk about his spunky, sweet little sister Ellie. Or I may ramble about Disney or teaching Montessori. Either way. Welcome to the Magic.