On Moving

Alright. So, you know that feeling when you travel somewhere, perhaps to a different country, and it feels like you've been transplanted to another world? Nothing...NO-TH-ING makes sense. The words you are surrounded by and the customs of the people are completely foreign. Complex.

Maybe you bought a map and the travel guide for that particular place. You have done your research, found the best ways to interact with the townspeople, even marked the highest priorities on your sight seeing list.

Then, maybe your flight was delayed. And, when you arrived it was raining. But, you didn't pack an umbrella. You have no idea how to say 'umbrella' in the native tongue, so you keep walking around from store to store playing a game of charades with the clerks who look at you like you have five monkeys dancing on top of your head. They have absolutely no idea what you're asking for. You have no idea how to speak the words they might recognize. Defeated, you walk to your hotel in the downpour. You collapse in a heap on your bed, ready for tomorrow to bring a fresh start.

But, it does not. Your entire vacation continues on this trajectory for about three months. You awkwardly walk about stumbling through every day trying to communicate with the people around you with no avail. Everything. Every single moment is...hard. At every turn, you have to learn something that you knew on your own previous 'planet.'

This, my friends, has been my experience with moving every few years for a majority of my life. As a child and for the past eleven years as a military spouse. We have lived in five states, six homes, added a sweet son and said goodbye to our sweet fur-baby along the way. I have shared countless hours with nine primary care doctors, probably over thirty specialists, seven dentists. (Ahem: confession: I have had one too many bad experiences with new dentists that I'm over two years in our current location without having a dental exam. I'm taking the baby steps to get there though.)

Now, consider the places you go each and every week: church, the grocery store, school, restaurants, the dry cleaner. What happens if they've changed the layout of your favorite grocery store? You walk around lost for a few weeks, muttering to yourself as you hunt for your necessities. What about the local barista that knows your name and your favorite drink and has it ready for you when you get to the front of the line? Are you 'Norm' at the watering hole down the street...does everyone there know your name?

What happens when all of these things change all at once? Universes collide. Moving is one of the most stressful things that a person can endure in their life; if I recall correctly from my Intro to Psych classes it's in the Top Three. And, that's for the neurotypicals. What about for those on the spectrum who need their lives to be orderly and make sense just for the wheels to keep from falling off?

For me? It looks like regression: I struggle to not hermit myself inside the safety of home, clinging to the very things that I have moved into this foreign home. I walk around with earbuds in my ears at probably ten grocery stores until I find ONE that will work. Then, I have to deliberate between which one was the LEAST offending. And then, at what time to shop there. Then...it keeps on going. The process to choose a grocery store feels insurmountable. And just like that, I draw inward. I pull myself into a cozy little cocoon before I feel myself slip too far away.

Someone once told me that I chose this life. I chose to marry a man whose life included regular moving. Yes, I did choose to marry him- my best friend and the man that challenged me and encourages me to be a better Sara, each and every day. What I did not choose was to find out that my first giant move away from my hometown as an adult sucked the life out of me. Like sucker punched me right after getting married, buying a house and moving- I had the stress hat trick!

But here's the thing; I did not choose for my brain to be designed in such a way that would feel like the world around me was foreign and crumbling. For the longest time, I analyzed and prayed and attempted to "fix" myself from all of this.

This last move, two years ago, I felt the collision. But this time, with the increased knowledge I had gained with my diagnosis, I was able to know why this was happening. I wasn't able to stop it from down pouring for what felt like three months (this is figurative!) but I was better equipped to communicate what I was feeling, what I might need and what types of things I could do to keep myself from going full-on cocoon.

And yet, as I consider the very words I just wrote, I had the vision of a beautiful butterfly emerging from the chrysalis. Maybe this is what this very process of moving has been giving me. Because had I not had so many difficult times before, how would I know that I made progress on the most recent challenge?

On Self Awareness

Ever since Jackson was diagnosed three years ago, I have made it my mission for him to know that having autism does not make him broken or damaged or sick.

Shortly after his official diagnosis, I had a phone conversation with one of the amazing administrators from his school. Always observant, ever curious, my sweet six-year-old said "Mama, why were you talking to Mr. S.?" I explained that we were trying to make sure that we could figure out a way to get him markers in art class that didn't "hurt his brain" (as he explains it). He looked worried...like maybe he was in trouble.

I said, "You've been sitting in rooms hearing a bunch of adults using words like autism and Asperger's and sensory but you don't know what those things are, huh? Are you curious about this?" He nodded, saying he didn't understand any of it. So, I took that as my naturally occurring cue to have a calm conversation with him about his diagnosis. (Brent and I hadn't even discussed when or how we were going to do this; but there it was in front of me.)

I had recently purchased an extraordinary e-book called Understanding Sam and Asperger Syndrome by Clarabella van Niekerk and Liezl Venter. We cozied up on the floor and asked if I could read a special book; he agreed. I explained to Jackson the character in the book might remind him of experiences he has and I asked him to let me know when he heard those things. And we read. And his eyes widened when he learned that this little boy in the book sounded so incredibly similar to him: Sam doesn't like his food to touch; Sam covers his ears when things are too loud; Sam likes to talk about things that interest him...a lot. More and more Jackson got excited as Sam's experiences mirrored his own. He exclaimed, "That's me too, Mama!"

The beautiful piece about this book is that at its conclusion, van Niekerk and Venter take the opportunity to explain what life looks like for Sam after his diagnosis: that he visits doctors to talk about his Asperger's; he wears noise canceling headphones, etc. And it normalized the experiences for Jackson...but for me as well.

Assuredly, Jackson said, "So, Sam's like me, Mama?" I said, yes, that he has been diagnosed with autism and that it is just how God made his brain different. Going on, I explained that it makes some things more difficult (like loud noises), but, some things much easier (like math).

This normalizing approach has been my gentle and real way of explaining to Jackson that he is not damaged or broken or unimportant. Brent and I both have reinforced to him that yes, his brain is different but it doesn't make him less (thank you, Temple Grandin).

We've taken that approach with closer friends who have witnessed meltdowns while having play dates. Educate. Explain. Normalize it for them. Because, when we teach about how our brains are different, not less, we gain empowerment and understanding and empathy. Always working towards empathy. Jackson can feel safe knowing that his real friends will still play with him and love him, even when he has a hard time working out a situation with them that wouldn't be a "big deal" to other kids. So, we read books like Understanding Sam and All Cats have Asperger's by Kathy Hoopmann with them. We answer questions. And, as kids do...they run off and play after wards.

I tell you all of this because the other day, there was a moment that was so huge. It gave me goosebumps and still does. Three years of conversations and encouragement and hugs. Three years of reinforcing that God knew what He was doing when He created Jackson, brain wired differently and all...that lead up to this moment.

Jackson and I were having lunch in a cafe the other day. I had handed him my Let's Chat Conversation Ring and told him he could ask me anything. It was his turn to pick what we talked about. He asked, I answered and then volleyed the same questions back to him. (Always teaching, always working on reinforcing those conversation skills...) So, we got to this one question: Proud Talent "What skill, talent or trait are you most proud of?" I proclaimed my "stupid human trick" of being able to play a recorder with my nose, making Jackson laugh and cringe all at the same time. But, I didn't expect what came next. I asked him the same question. And his response? "Having autism." 

Let that sink in for a moment. Because it still gives me chills. Of all of the character traits and skills and things that my sweet boy is amazing at, could be proud of, the thing that he is THE MOST PROUD OF is having autism. This boy, y'all. He takes my breath away without even realizing it.

Because here's the thing for both Jackson and myself and everyone else on the spectrum: Autism is as much a part of who we are as every other experience and characteristic that God has placed in our lives. It informs nearly every decision that we make, conscious or not. And, there are plenty of difficult days that I shake my fist and go to blows with God over why me or why Jackson when the moments are so difficult and overwhelming to bear. 

But then, there's Jackson. So simply declaring last year on the first day of school when it was his turn to talk about something about himself and what he's excited for, saying "My name is Jackson. I have autism. And, I'm excited for lunch." Just. Like. That. Not because it is an excuse or a crutch. Not to try to get away with things. Not even to get special treatment or attention. Because it is just who we are. How God made our brains. 

And in the same vein, Jackson's talent that he is most proud of is "having autism." Because, well, why shouldn't it be? It makes him, and me, pretty ausome. 

Note: Anytime I mention my son, Jackson, in a blog post, I read it with him and ask his permission. I ask for his feedback and make necessary changes to make this place be a safe place for him too. 

On the Stigma of Medication

There was a time years ago that I believed that taking medication was a sign of weakness. That it proved that there was something "wrong" with me. That is was a tangible way to prove my brokenness to the world- especially when I had to go to the pharmacy and they would discuss my medications with other patients too close. At those times, it was a head-hanging, don't-make-eye-contact type of moment. I would think "Shhhhhhsh. They'll all hear you."

I battled with my sleep doctor for almost a year over the fact that I did not want to take medications to control my sleep disorder. Even after Brent and I discussed with her my "taking care of the babies" years ago when Brent would wake me and bring me back to bed. Even when we explained the multiple incidents of me punching and kicking Brent as I tried to escape dangers in my dreams. I tried melatonin- but it didn't help completely. She explained the best way to keep me in bed, to keep myself and my husband safe while I was sleeping, was to take a particular medication that is proven to help this disorder. I said "no" and continued to do so after multiple sleep studies and anecdotal evidence that supported the diagnosis of REM Behavior Disorder.

Easiest way to explain this: people with this sleep disorder act out what they are dreaming. Most people's bodies go into a state of paralysis during REM sleep- it's a built in protection that keep our bodies from doing what are brains are dreaming about. A fellow REM Sleep Behavior Disorder sufferer went through the similar process of denial, danger, and eventual realization that he was not going to get better until he saw a sleep doctor, got himself healthy and took his meds. You can check out Mike Birbiglia's journey in his independent film Sleepwalk with Me or on his stand up album with the same title. Mike says it best:

"It was like one of those stories where people wake up after a hard night of drinking...but it was in my living room" [where he had crushed his TeeVo after climbing onto the furniture to celebrate his win in the Dustbuster Olympics- truth.]

Mike goes on to say "This was the first time I remember thinking 'well this seems dangerous, maybe I should see a doctor. And then I thought, maybe I'll eat dinner. I went with dinner. [...] Sleep walking is a terrifying experience because it's your body making a decision that is different from your conscious mind. Your conscious mind is like "we're going to rest for a few hours" and your body is like "let's go skiing!" I skipped ahead to a chapter on sleep disorders. And I find a disorder called REM Behavior Disorder where people have a dopamine deficiency- that's the chemical that's released in your brain into your body when you sleep so that you don't do what is in your brain. [...] I saw a doctor who specializes in sleep disorders. So now, when I go to bed at night, I take medication..."

So what happened to me this weekend? After a few odd circumstances that were out of the norm, I came into the long weekend without my medication. I made phone calls, went to urgent care, spoke to the on-call nurse. I was told that it was not an emergent need and that unless I was in danger of hurting myself or others, that it was not necessary to go to the ER. I felt beat up- this is the first time in my life of taking medication to mitigate my sleep disorder symptoms that I had ever dropped the ball on making sure that I had my medications. And, I was beginning to feel as though I was being treated by some of the medical staff as a junkie. 

My literal brain went into that place of, "keep it together, Sara" and I started experiencing symptoms of my withdrawal from my meds on Sunday afternoon, in addition to not having good sleep for three nights. The withdrawals from this medication are legit and awful. I was clammy and had the shakes for two days and counting. My head was pounding. My sensitivities to light and sound were amplified. I quarantined myself to my bedroom to keep from showing how badly this was affecting me to my sweet son. He didn't need to see me at my worst. In moments that I couldn't control my body's jitters and shakes and muscle spasms. 

But then, last night, he asked. And I could not withhold information from him. So, I told Jackson that Mama was having a hard time without my medications. That it is called withdrawal. And that it would not go away until I had my medication in my system. At the doctor's office and pharmacy multiple times, Jackson stated "Mommy's going through withdrawals from her medication." And, I winced every time. That shock and embarrassment of they're going to know ate away at me. But why?  I hadn't done anything wrong. All I did was miscount my meds before a holiday weekend at a time that I believed I had more refills because for the past two years, I was able to have three refills per paper prescription. So, the routine got me. I wasn't aware that my prescription for traveling was only for one month. I also had bought a pill organizer so I would be able to make sure I knew if I took my meds or not. But, all of this caused a snowball affect that created a nightmare of an experience. 

Yes, it is difficult to make the decision to take medications that cause my central nervous system to do what it should naturally do on its own. It's anguishing to know that I cannot respond to my son's cries for his parents in the middle of the night once my meds are onboard. It is something that I had to come to terms with as I grappled with the decision about future babies for our family- how would we handle me needing to take this medicine and needing to get up in the middle of the night to take care of a newborn? So, yes, it is a decision I make everyday. One that is not made lightly or on a whim. I have matured enough to know that for me to be the best me, the one that will fulfill all of my God-given abilities here on earth, I need to be well-rested. I need to not be injured because I jumped out of our bed to catch my purse as it floated away in the ocean. (Yup. That was a thing...) I need to be able to go to sleep knowing that I'm not medicating myself to be numb or to not feel or anything else. I'm doing it because it is what my body needs to be healthy. And safe. And at the end of the day, it is the best decision for me. And my family. 

I saw the other day on The Mighty an article about a fellow autism mom and autistic woman who felt compelled to show that admitting we need help- physically and mentally to get through this is not a weakness, but a strength. This has tugged at my heart for days considering the ordeal that I have gone through with my own medications over the past five days. So, I urge you to check out Erin Jones' blog Mutha Lovin' Autism and her story because she has inspired me to post how I am #medicatedandmighty.

*Note: Shared with Jackson's permission after reading him the post.