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. 

On a New Restaurant

Last night, Brent and I took advantage of an opportunity to have dinner out to get our calendars linked. We decided to try a new restaurant that we haven't been to before. It was large and industrial inside, exposed brick and pipes. Cold. It was bitterly cold inside. Gigantic televisions broadcasting sports in every direction. And people. Everywhere. Barely a square-foot throughout the entire place, at least where we were sitting, that didn't have people.

We ordered our drinks and meals. I got out my laptop and input dates into our calendars. We focused on that and I was able to tune out the rest of the stimuli. But when our food came, I had my laptop away. I was able to eat, somewhat. The salad I ordered was OVERLY spicy, like on fire, spicy. And, like a domino effect, the sensory input started flooding its way into my brain. I ate the best I could.

But, the sound got louder, like someone was simply turning the volume dial every few minutes. The giant TVs invaded my visual system. I covertly covered my ears at first. Trying to block it out. My foot started tapping. I wanted to evaporate into thin air.

Faintly, I could hear Brent talking to me. He was asking me to go out to the car. He said something about my eyes...I shook my head no. I was not ready to wave the white flag of surrender, that I was unable to do that particular moment. That particular place. On that very night. I wanted to conquer it and be in control at that moment.

Eventually, I think it was something like the third time that I heard Brent tell me to "go outside and wait in the truck" while he paid the bill, I submitted. He had already taken the truck keys out of his pocket and put them on the table. I picked them up, grabbed my bags and left.

I know that the oodles of staff that were at the host area did not say anything to me. I was appreciative so that I didn't have to respond. I could just get outside, where my sensory system could calm down. Where I could catch my breath and yet feel on high alert as a man walked oddly close to my "bubble" and followed me into the large parking lot that was behind the restaurant. I spread Brent's keys as a makeshift weapon between my fingers and got to the truck. Unlocked. Got in and relocked the doors. And, I grabbed Jackson's blanket from the back seat to warm myself up.

A few minutes later, Brent was with me. He was in the truck and asking if I was okay. If I wanted to do something else. I asked if we could just go home. We sat together in a moment of quiet before he started the truck. Once in our house, he gave me a big hug. I apologized. He told me I didn't have to.

But, my neurology, my differences. THEY had affected our evening together. It's as though I have become a hermit in certain instances because it's way safer to live inside the confines of my own home than to put myself in harms way.

And, isn't it interesting that whenever we go out to meals with Jackson that we try to sit in the least crowded area of the restaurant, where it is the least assaulting on the auditory system and the brain. Often going before the dinner crowd hits, we joke that we are akin to the Early Birder's these days. We make these simple changes each and every time and I never once feel saddened at the changes that we have made to help Jackson to be authentically himself and to not have situations where the insurgence of stimuli cause moments of him eloping and/or needing to stim in dangerous ways so that he could just "be" there.

So why am I so hard on myself?

Why am I so resistant to feel the need to apologize for the way I have been made?

I guess I'm just not there...
yet.

On Meltdowns

Written Saturday:

There's this thing out there in the Spectumite world. It's called a meltdown. To some, it may look like a tantrum or a panic attack or even a seizure. And while all of those things are absolutely real, so is the meltdown.

Let's get this one thing out of the way before we go any further. A tantrum is not a meltdown. Now...just to be clear...repeat after me: A. Tantrum. IS NOT. A. Meltdown. A tantrum, often observed in toddlers and young children, is a common response to a desire not being met, such as receiving a desired toy or particular food. When that item is received, the crying, screaming, shouting, etc. ceases because that desire is met and the child is no longer in want of it. We've all seen the parent in the grocery store telling a child no to the impulse item in the checkout line. You've heard the wails and screams and then, when that parent says yes...the negative responses stop, nearly immediately.

However, meltdowns are VERY different in that they are the brains' response to having to process TOO MUCH stuff. Too much noise, too much emotion, too much to do, too much stress, too many people, too many voices...too much...too much...too much. I often think of the good ol' holiday favorite, The Grinch that Stole Christmas. (In recent years, I've speculated that the Grinch, himself, is autistic. Think on that a little.) Remember, how the Grinch complains about the Whos in Whoville and their "noise, noise, noise?" Meltdowns do not simply cease when a wished for item is granted. A meltdown may be preceded by a tantrum, but there's a lot more going on under the surface than it looks like.

I like to describe my sensory and emotional experience of autism as a bucket. As in, there is a specific amount, er, "threshold," if you will, that once met, I cannot undo without some work. Public place with crowds? There's some drips into the bucket. Unexpected change to event, faucet might have just been turned on half way. Missed meal, lost phone, and background noise that is like noise down a chalkboard is like a fire hose on full blast. So, all of my day-to-day activities fill this imaginary bucket that "the autistic side of my brain" as Jackson likes to say (keep in mind- he's 8 and believes that there IS just ONE part of his brain that causes him to be autistic), all those things are either drips, larger drops, a leaky faucet, or a fire hose into my bucket. Once my "water levels" start to reach the brim of the bucket, I begin to feel anxious and in the "Yellow Zone."* I've been with my partner long enough that he can see it, even in a crowded baseball arena with a child between us. He has described it as my pupils dilating, my eyes darting, a long stare and a rigid body. (These are what I look like prior to meltdown. Everyone is different!)

Sometimes, my body and my brain feels better when I am able to do some sensory activity like body brushing, drinking a cup of tea, using my calm box, or heavy work. I recently got a weighted blanket that has been fabulous for not only my sleep but also great for giving me deep pressure when I'm on the brink.

However, there are still dark moments where I cannot avoid a meltdown. When I cannot avoid the tears and the non-communicative moments. The impulse to lock myself away in a safe place and gently rock my body. There are moments when I feel such overload that my bucket is sloshing all over the place and I cannot control anything. It is in those moments that I feel my most vulnerable. Because any sound, any touch, any small thing can be another assault on my nervous system that can push me and my bucket all the way over.

Today was a meltdown day. I often refer to them in jest as "days I'd like to move to Australia."** It was a long morning with unexpected hiccups in my day. Rushing and trying to find a post office that was open while Jackson was at his Saturday morning therapy. Then, we stopped by a crowded co-op shop that I needed to purchase a specific item from. I was trying to juggle a phone call and could not focus because all I could hear was the noise around me. Jackson wanted nothing more than to go play on the playground across the street. Any other day, I would have loved to let him. But I needed to use the restroom. He was relentless in his requests. A woman who worked there...she saw me. And I say it like that because she asked if she could give me a quick tour around the facility, noting after we got away from the crowd at the register that she could tell I looked quite uncomfortable. She must have seen what Brent sees. God bless her. So, she got me some reprieve and when we returned back, the crowd was gone and I was able to check out in peace. Yet, it went on. Drips, drops, leaky faucets, showers and downpours into my bucket. Including a near-mishap with the garage door and my body. I had a moment of weakness. I shouted at Jackson. I went into the house, used the restroom and began to cry. The crying turned to non-stop tears. I made myself a lunch and tried to gulp it down. I got my blanket,  wrapped myself in it. I tried to keep it from coming. I tried to meet those primal needs because I could feel that bucket beginning to tip like at a water park. And, it did.

I went to my room. Shut the door. Knelt on the floor with my blanket pushing its weight into my back. When my friend called, I auto replied that I couldn't talk. I texted her back telling her I was having a moment. She asked if she could help. Old me would have insisted I could handle it. I'm not so stubborn anymore. I asked if she'd mind helping with Jackson for a bit this afternoon. I felt like I needed some time for my brain to have a break.

Jackson must have known that the meltdown was upon me. (We can sense these things with each other.) Because a bit later, I heard him knock on the door and ask "Come in?" I told him "no." He shoved his little fingers under my door, which my body was stiffly against. "Hold my hand, Mama." So, we held fingers for a minute. "I'll be back," he said and a few seconds later, he knocked again and requested entrance. I moved my body and he opened the door. He put his Calm Bin down in front of me. Non-verbally offering it to me. He knelt beside me and wrapped his arms around me and gave me deep squeezes. I got his body brush out and began running it over my arms, legs, and body. I knew he was watching me. My head was telling me...you are the example, Sara. Be the example. He is watching you. You might want to just lay here and cry, but do the techniques. They work. My son, this little man in an eight-year-old body, sat silently with me. He must have noticed the calm start to wash over me- he said "Mama, I'm going to go play. But, Tiegie's gonna stay here with you. K?"

So, my brain has been reset now. Not to say the bucket goes back to empty like after a restful night's sleep. But, there's this weird sensation afterwards, a sense of calm that cannot be explained with words. I think of it as my brain doing a hard-restart, like the old-school Control + ALT + Delete when the dreaded blue screen of death occurred on my old PC. Or, like unplugging the cable box from the wall when it's not cooperating. Yeh. That's how my brain feels.

*Yellow Zone: Found in The Zones of Regulation by Leah M. Kuypers. We use this curriculum with Jackson at his occupational therapy to describe his emotional state and the expected zone of his activity.

**Australia: Nothing against the country. I'm referring to Alexander and the Terrible, Horrible, No Good, Very Bad Day by Judith Viorst. Alexander states he thinks he'll move to Australia every time he explains another negative aspect of his day.

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 First Week of Third Grade

So, it is Sunday. The boys are sleeping. And it seems like the perfect time for some reflection on this week. And, I cannot possibly share my thoughts with you without you knowing the narrative. Because, it is in those very moments that you will be able to glean understanding of my take-aways, my starred thoughts.*

Monday: With great anticipation, we visited Jackson's new school. He met both of his teachers and had the opportunity to get to know his homeroom teacher one-on-one. With my guidance, Jackson went to the "All about Me" poster Mrs. H** and returned with three questions about her like I had instructed. Nervous Mama that I am, we discussed plans for his noise-canceling headphones, where his seat is, etc. until we have our Transfer ARD meeting. I felt comfortable knowing that Mrs. H has her teaching certificates in special education in addition to her early education degree. Seems like a bonus!

Wednesday: First Day of School! Groggy eyed, Jackson made his way through his morning routine earlier than previous years. He had the "normal" first day of school breakfast: blueberry muffins. We took the requisite "first day of school" pictures and we were off. Almost there, I asked him how he was feeling...one word came from the back seat. "Happy." 

At pickup, I was braced to hear the usual waterfall of disappointments, hurts and emotional release of the day. To my surprise, Jackson practically bounced into the car. "Mama, that was the best day of school ever! I got the most 'good jobs' in one day of all the days I've ever been in school!" He was literally beaming, with a smile from ear to ear. "AND MOM, we get thirty minutes of recess, that's twice as much as last year!" Who could argue with that? Exercise and play are essential parts of learning! I asked him how it was with the really loud thunderstorms that we had throughout the day, he explained he asked to get his headphones, put them on and not a single person made fun of him. 

Driving home, we chatted about our day. I asked him if he had to talk about himself in his classes. He explained that Ms. A** asked for them to tell their name, something about them, and what they look most forward to this school year. So, I asked what he said. The most unexpected, honest answer came from my child. "I said, 'Hi, I'm Jackson. I'm autistic. I'm excited for PE and lunch. Mama, everyone else said they were excited for lunch, so I said that also to make everyone laugh. They did." My mind reeled. I asked, "Wait. Jackson, you just stood up in front of your class and told them that? That you're autistic?" He said defensively, "Well, no, Mama. I didn't just stand up. I waited for my turn." Oy. The laughter-inducing Literal Leonard*** strikes again. I laughed so hard, partially because he misunderstood why I was asking, thinking that I was implying that he, at random, spouted out facts about himself out of turn. But, more so, I laughed because my heart was exploding in his comfort to share one of the pieces that make him...SO authentically Jackson...It was laid out on the table. By his own admission, on the FIRST day of school. Ironically, this piece of him was not acknowledged or even spoken of in his previous school. It was almost as though, if they spoke the word autism, it would open Pandora's Box.

Thursday: Thunderstorms continued and raged through the morning. Jackson was overwhelmed by the noise and very anxious for the 'next one.' We tried to keep the routine the same as the previous day, but he was very fixated on the storms. When we left the house, Jackson attempted to run back into the house when lightning lit up the sky. We drove to school through monsoon conditions. Both umbrellas were not in the car, so I stopped by the convenience store near the school. No umbrellas. But, I found a tarp. Yup. That happened. I parked and walked Jackson into the school with us both partially protected by a blue tarp. (We must have been a sight.) I walked him to his classroom. My fear was that if there was a clap of thunder or the lights were to go out, that he would possibly elope into an empty classroom or someplace that might seem like shelter from the storm. Furthermore, since he was there before class started, I knew he would need to go to the gym, which is in a separate building on the campus. And that there are currently no fences. This Mama was nervous for all that might happen to a frightened boy who is trying so hard to keep himself together during this nasty storm. I told Mrs. H my concerns; she asked Jackson if she could help him and have him stay with her. Leaving the school, I requested the Special Needs Coordinator to contact me ASAP, which she did less than an hour later, after having checked on Jackson in his classroom. We discussed a plan for the day until our ARD occurs. Peace. Reassurance. Understanding from the people I am entrusting my most important person in the world with.

Much like the day previous, there was the same after school reaction. "Best second day ever, Mama!" Except, he explained that in math, everyone received the same number of uni-fix blocks and got to BUILD with them. I didn't quite understand and prodded for more details. "We weren't allowed to do that last year, Mom. We had to only use them for counting. Never allowed to build with them. Mrs. H actually told us to build with them!" They all got to see what they could make with the blocks- creativity, individuality, and learning encouraged in a classroom? Happiness overfloweth. 

Friday: Same as the previous days, except this day..."This was the best first week of school ever!" And, he had received an invitation to one of his classmates' birthday party in two weeks. When I asked him what game we thought we should give her, he said, "Well, on the first day of school, she said she was most excited for math. So I think it should be a math game." Hmmm. Well done, son. Well done, indeed.

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Sometimes, this ride we've been on with our sweet, beloved Jackson has been so overwrought with the negatives. What he struggles to do. How we struggle to help him. The meltdowns and anger. The sensory overload and stimming and anxiety. It is incredibly easy to focus on the challenges, especially when you feel like you're being T-boned by a Mack Truck at every turn. Especially when the very people you've entrusted him with for his education have been so focused on his "smartness" that they've completely missed the rest of him. 

But this week, it has reaffirmed that my Mama instincts were dead-on-balls accurate (life needs more "My Cousin Vinny" references). My feelings that given the opportunity, Jackson could have the chance to shine in the complexity of all the pieces that make him uniquely Jackson, including his autism, proved true.

And then, he was so incredibly brave to put out there, in front of his teacher and his classmates, that he is autistic. That moment quite possibly might be one of my proudest Mama moments to this day. Because he is not ashamed. He feels safe to tell others what makes him different from them. My son just put it out there in a way that I have been struggling to do for the past year and a half. He is owning it not because it defines him, but because it is a vital part of who he is. How legitimately awesome of him. 

So, while I feel like I spent this summer holding my breath in fear of the unknown of this new school- new policies, longer commute, etc. I have finally been able to exhale, possibly just now. As I've put all of this in writing. Don't get me wrong, I know that just like any other school, there will be hiccups and struggles that we will face. I'm not expecting this to be all sunshine and unicorns tooting rainbows, but man...at least I will not have to spend all of those meetings, fighting for them to SEE my son, in his entirety. That is already done. And it is only the first week of school.

*"Starred Thought" was the great George Parks' way of saying pay attention; something important is coming; commit this to memory. I had the honor of attending drum major camp with him at UMASS my senior year of high school. Any time that I'm reading, writing, taking notes, if it has a star next to it, I know it's important. 

**Not their real names; changed for their privacy.

***Literal Leonard is a fictitious chap that Jackson's Occupational Therapist refers to when her ASD kiddos are taking something too literally. There is a poster of him and "Taco Head" on the wall in one of her classrooms.

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 "Normal"

One thing that I have found in my time being a parent and person on the spectrum is that there is no "normal." We should take that word right out of the vernacular of special needs, autism and the spectrum right now.

I also struggle with the diagnostic codes of "low" and "high" functioning. Yes, they are useful for doctors and therapists to know what they're walking into to begin with, but they cannot define any one person's experience.

Recently, we decided to look into different schooling options for Jackson's next year of school. We had to explain our reasons why without going into too much detail regarding our struggles in IEP meetings. When discussing with Jackson that his behavior at school was not what his teachers and the staff expected to see as "autistic" behaviors, he asked me to explain. I clarified with one sentence: "Jackson, you do not look autistic to them." His mind reeled in ways that I didn't expect: "But, Mama. What does autism LOOOOOOK like? That's so dumb...I'm 'artistic.'" (Note: Jackson means "autistic" but struggles to pronounce it correctly; it comes out as "artistic" often.)

I went onto explain that there are behaviors that his teachers and support staff (Speech/Lang. Pathologist, Diagnostician, etc.) are looking for when they observe and interact with him. More specifically, the obvious signs. Hand flapping. Verbally ticking. Not interacting socially. Little/no eye contact. Which, when they look for those, none are visible...because he's not in area of the spectrum. 

He hums/sings/plays on repeat songs over and over, specifically Star Wars themes and battle tunes. At times, friends tell him his behavior is "annoying" directly in front of me. (Which, I do not love, but when I explain it to these friends' parents, if these interactions do not occur organically, we are not able to help him appropriately respond.) He is verbal...to the point that I sometimes wish that he wasn't as verbal. He will incessantly drone on about his recent obsessions. (Which, let's be real here. An 8 year old boy's obsession with the finer points of Star Wars artillery can only be attended to by one person for so long.) He makes eye contact...but only sometimes. When he knows the person. When he is talking. Otherwise, he'll make fleeting eye contact, which is a learned behavior,  because I taught him to do that starting when he was two years old by telling him to "find a freckle" on my face so that he would at least just look in my direction. Yes, he plays with other kids. But what happens when they try to change the rules to a game or behave in ways that are unexpected? Shutdowns and meltdowns that can last for hours that I will respectfully withhold from you, the reader, to protect my family's most difficult and challenging moments. And the list goes on... 

I explained to Jackson that at this school (that will, in fact be his school next week), he will not have to hide in the bathroom to practice his Occupational Therapy techniques or to get away from the noisiness of his class. During our visit there, a child asked a staffer there for his "noise canceling headphones."* At which time, that staffer told him to go to the office and ask for them to retrieve them from the special needs teacher's office. Jackson's eyes lit up and he looked at me with a small smile. I knew what that was about: when I told him during our original conversation that many kids wear them at this school, not just kiddos with autism, he exclaimed "So, Mama! That means that I'll be able to wear mine without anyone making fun of me?" I nodded. He continued, "Mama, at this school, it sounds like I'll just be able to be me." Insert smile. And, my heart nearly melted. Because, as a parent, isn't it exactly what we want? It is for me. One of my biggest goals in life is to raise Jackson to live authentically as himself.

The thing that I repeatedly toil over in my mind. The piece of that interaction that I cannot get past, that I fought with at the final ARD** meetings at his previous school is this: how much of my child's brain power was being used each and every day to just maintain this appearance of normalcy? How much of his focus was on trying to be someone else so that he wouldn't be made fun of by his classmates (although it still occurred)? And, just how much of that super intelligent brain of his could have been working on more educational pursuits than this job of holding himself together? And, at this new school, there is the opportunity for a perceived normalcy for Jackson, because there are other children who are able to access the things that they need to be able to succeed in a safe environment.

Back to the main point. This "normal-ness" that we assume is there. This "level" (and I mean that to be emphasized to the one millionth degree) it is perceived in snapshots of his life. Of my life. Of ANY one person on the spectrum. Because at any one moment, Jackson or myself...we can look "high functioning," (perhaps a version of less-than-Autistic). We can fit right in. But, when that sensory and social threshold has been met, which is usually at the end of our days, when we are at our worst, we might appear to be "low functioning." 

I urge you to look into the lives of persons who were assumed to be "lower" functioning in their early Autistic lives and see where they have been able to accomplish. Look up Temple Grandin, Jacob Barnett, John Edler Robinson. Appearances almost always are deceiving.

*We own four pairs of these; literally, so we do not leave home without them. There is a pair in each of our vehicles, one in Jackson's room for overnight thunderstorms, and a pair recently purchased to be left at school.

**In Texas, the name for an IEP meeting is an "ARD" which stands for "Assessment, Review and Dismissal." We were told that this is the case because those are always the goals for special needs services within the public school system. 

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.