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.