Sunday, February 5, 2017

I Scored an Interview with the Man Himself!!!

What is it like to have Asperger's? When Dex was first diagnosed, I asked lots of questions. I talked to doctors and therapists. I read websites and books. I talked to other parents. I sucked up all of the knowledge I could find. Honestly, though, one of the best explanations I found (Ok, my friend Catherine fount it... thanks!!!) was an episode of the kids show Arthur. If you have the time and are so inclined, it's fantastic for kids and adults!

Here's the link:

However, there is one source I've never really explored. I'm almost ashamed to admit it, but I've never asked Dex what it's like to have Asperger's. We talk about it openly but mostly in the practical sense. (Aspies tend to be pretty practical anyway.) The other night, I took the time to ask Dexter some questions. Here is a brief interview with him. Things may be worded in a peculiar way, but that's because it's how Dex phrased it and he's very particular about me typing exactly what he says. He will correct me if I misrepresent his thoughts. It makes me smile. I hope this gives you a little insight into his brain and his thinking.

Mom- Your brain is a little bit different because you have Asperger's. What are things about it that aren't the same as other people?

Dex- Ok, not a little bit. A lot. I don't get excited faces as much even when I'm excited. (I was impressed that he noticed that he was less expressive with emotions than other people. I didn't know he understood that.) I also have a lot of questions when I realize something so I understand more about it. I know sometimes people are bothered by lots of questions. I like that you just YouTube when you don't know stuff and don't get mad. Like I wonder how gas burns in a car without making the car explode. I wonder how other people are acting and why they don't understand me. Well, they understand my words but who makes them act and not understand what I mean? I also wonder about things like the red line that shows up under the words when you type. You didn't spell that word wrong.

Mom- It's telling me that the grammar isn't right.

Dex- I don't like it so we made it go away. Yeah, ignore it. I'll talk how I want to talk. There.

Mom- What about how things feel or sound? How are you different from others?

Dex- I hate snow. It's cold. I don't like the feel of it. It's very hard to explain about this because I don't think other people understand. And to explain about how much I hate coldness is frustrating. I also don't like loud noises. They sound twice as much loud for me than it does for other people. I can fix it with my headphones if I have them or I need to get away from it. If I don't get away I hate the noise and I get mad.

Mom- It's different to be mad when you have Asperger's, I think.

Dex- I know. I'm sorry. It causes me to be very mad. It's hard to control my brain when I get too much mad. I've gotten good at controlling my brain now though so I don't get too much mad anymore. When I get too mad I lose my voice and I whisper. I do that so I don't explode. I don't do that too much because I'm the boss of my brain now.

Mom- What's the best and worst part of Asperger's?

Dex- I don't know! I don't know what it would be without Asperger's so I pretty much can't tell you. I don't think there is a worst part. Life is always fine to me. My brain is not a lot different from my Dad's because he has Asperger's too. Duh. I pretty much like being like my Dad. We are a lot the same. I don't want to not be like my Dad so I would not want to not have Asperger's.

Ok, I'm done. Let's play your game now!!

And just like that, our interview was cut short, and I spent the rest of my time until dinner playing Best Fiends on my phone so he could watch and help. And that's really about what it is. We talk about Asperger's. We are open and it's a good subject in our house. But it certainly doesn't define who he is. It's not the majority of my life. (Right now anyway... there are certainly times that we've been in bad places,and it's consumed every minute of my day and tormented me in my sleep at night.) Dexie is just Dexie. Another 8-year-old boy who is obsessed with video games.

What a magical thing to have a child who loves and trusts me enough to let me into his world and to try to explain his feelings. That's a frustrating thing for him to do. I'll never fully understand Dex (or Shawn) because I can't feel what they feel, but I'm so grateful that they are both willing to be patient with me while I try and while I continue to learn.

Thursday, February 2, 2017

A Peek into Our Marriage

Because I've addressed the fact that Shawn also has Asperger's I figured it might be interesting for me to answer the question that comes up most often when people know: "What's it like to be married to someone with Asperger's?"

Honestly, I can't answer that. I can tell you what it's like to be married to Shawn, but Asperger's isn't like any physical or mental health issues. There isn't a set list of symptoms or indicators. They say if you've met one person with Asperger's... you've met one person with Asperger's. And they are right. Even Shawn and Dexter have some major differences. There are generalizations that apply to many of them, but even similar issues can present differently.

So, what's it like being married to Shawn? Hard. And rewarding beyond measure.

One of the typical traits of Aspies is persistence. Shawn definitely fits that. (He'll work on a math problem for days on end without the desire to quit!) This also means that despite all of the struggles that come with being a parent, and the fact that being a father of four is even more overwhelming for him than most, HE. JUST. DOESN'T. GIVE. UP. He is present, active, and loving. When he's happy, he's there. When he's tired, he there. When he's overwhelmed by sound and chaos, he's still there. He's never decided that Asperger's makes it too hard and given up. He doesn't view taking care of the kids as my job. I've never seen someone work so hard to overcome their struggles. This man is not willing to fail his children.

It also means that we have to do things differently. Shawn needs more alone time than most. I'm very social, and I need people I love to recharge my battery. I've learned to get some of that from others. Justin and Jenny, in particular, provide me daily company and companionship. I've learned that if I ask for less quantity from Shawn, he is able to give me better quality time. It's made things easier, and I feel more loved by him. He doesn't feel constantly drained by my need to be together. He's a light sleeper and sleeps better alone. My moving, coughing, breathing, pillow fluffing... they all wake him up. We often don't sleep together because of it. I know! I know! It seems crazy! It's not how relationships are "supposed to" work. This is another way that living outside the box works for us.

I'm married to a man who actively supports my independence, pushes me to be my best, let's me think differently and be creative, embraces my quirks, is good at the things I suck at, is calm when I'm frazzled and respects our kids as people. It's awesome! Mostly.  But I'd be misleading you if I didn't explain how hard it can be.

Sometimes there is a wall built up that doesn't come down. His brain isn't wired like mine. Emotions are hard to process; both his own and mine. He doesn't figure them out by talking through it. He needs to process things on his own. Sometimes that means he's closed off. Asperger's individuals also have a higher likelihood of battling with depression. We've battled some of the lowest lows. Therapy and medications are available but because Aspie's work differently, it's often hard to find a therapist who understands them or medications that are effective. Talking about his feelings doesn't come easily, and it's often not helpful. Shawn is also incredibly smart, so he wants to know how things work, how brain works, the point of therapy and what the therapist's motives are, how meds work... In fact, just being highly intelligent is isolating because others don't relate to him.

Other things used to be hard before we knew that Asperger's existed. Obsessive loops were just weird, and I wondered why he couldn't let go of subjects. Now I've learned to embrace the loops, and I encourage them. He learns everything he can about a subject, and I end up learning from him... economics, history (we are on a Hamilton loop right now!), science, different video games, cooking... all things that he's been fascinated with at one time or another. It's been awesome for our kids too! Our family bonds over a lot of these things and we find fun projects. I also struggled with his antsiness with snuggling. Before, I took it personally and worried that he didn't want to be with me. Now I understand that it really isn't me. It's about overstimulation. I don't push so he's willing to be affectionate because he knows when he's done, there is no guilt, and I will let him go. I feel very loved knowing that he makes an effort to make me feel loved because he does snuggle.

We've learned that we are two very different people; probably almost incompatible. But we love each other so much, and he's taught me that we don't have to live the way relationships are traditionally expected to be, that we make it work. More than that; we thrive. We respect our differences and work to love the other first. We don't care how outsiders see us when they look in which is why I can write this and put it out there for the world to see. Our marriage is just that: OURS. It is healthy, stable, safe, protective, valued and unique. It's weird. And so are we.

Shawn, I highly doubt you read this blog... lots of emotions and TLDR... but I love you in ways that you'll never understand. We were just kids when we fell in love and over the last 23 years we've both grown up. We've changed. And we've let each other grow as individuals and as a couple. I often think you are the better parent and I know I'm a better person because of you. I love you just the way you are, and I am thankful that you love and trust me enough to live our lives together. Thanks for suffering through life with a neurotypical like me!