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.