Functioning Labels And Future

To be blunt, which I always am anyway, I don’t believe functioning labels hold water. I think they’re very good for creating elitist attitudes and drawing lines between people. Non-verbal autistics are thinking humans, many of whom are geniuses whose bodies are not working right to get the words out – while their minds are better than fine. It is a cruel irony, isn’t it? No person with autism truly articulates all the depth that goes in their brain. No, I don’t either. When communication is affected, how can we?

I’ve stated here before that we are all mixed functioning in life, regardless of whether or not we are disabled. I’ve also stated here before that autism is not a continuum of functioning abilities. No two people with autism have the exact same symptoms, the same amount of symptoms, or are impacted to the same extent. Therefore, no real continuum.

Often when I chat with people on the spectrum, so many readily identify themselves as “high-functioning” and it seems like something of an impossible-for-anyone-to-win contest to see who can be the most “high-functioning” or the “least affected”. People shouldn’t view things that way. (I admit, yes, it makes me feel bad when folks gloat about not having problems I have. I will rejoice ecstatically for anyone when things are overcome. But I don’t appreciate people sticking their noses in the air, so to speak, implying that I or anyone else is of lesser worth.) We are all simply people, all with struggles, and we should unite better than we do. I cannot stand the elitism among people who say Asperger’s is not autism because they do not want to be associated with their idea of autistic people. This is not to say that all people whose official label is Asperger’s do this. My husband certainly doesn’t do this. Plenty of people don’t, but those who do make a big stink about it which helps no one and hurts many.

My dear husband and I couldn’t be more different in so many ways, and yet, though we share almost none of the same symptoms, he will be the first to say we are alike. He is also the first to say that neither of us are better than the other. I need more protection (as I am more easily taken advantage of, for I am chronically naïve in ways my husband outgrew) and I need more medical care. He needs more social graces with the world outside our home who isn’t used to him, and his own naïvety is very different from mine. We both could use more advocacy. Who functions best depends entirely on individual viewpoints; that is to say, whoever has the strengths determined most useful to any given onlooker functions best in that onlooker’s opinion.

Our tiny daughters, not yet two years old – who knows what the future holds for them? We tell each other we’re ready for anything, which is a big lie because no parent is ready for the future or certain about the present. There is no way of knowing what our youngest girls will be like with time. We can’t predict how verbal either will be. Both have barely verbalized, the youngest almost never, and both have never imitated sounds or spoken consistently. There is a whole lot that both have never or almost never done, and delays are very striking next to their same-age triplet brother and next to others their age. (It feels bizarre to celebrate my son’s milestones, what with how the baby girls have so far to go to catch up!)

You just never know. You can’t predict outcomes. I was non-verbal and non-responsive at my babies’ age, and I began talking up storms at age three. The youngest does not self-feed, but neither did I until I was, as with speaking, three.

Envisioning these two as preteens in 2021 is impossible, so full of what-ifs. What if one far surpasses the other in the world’s view of functioning? What would that do for their bond as multiples? Neither are like their brother. That has already distanced his bond as their triplet.

I have a non-identical twin sister of my own. She is not on the autism spectrum. We are very different people, contrasting “like cartoons” in the words of many. I am tall and lanky; she is short and stout. I am a socially dysfunctional social butterfly; she keeps to herself and can easily “read” people but simply gives no damns about pleasing. I lean more left-wing; she leans more right-wing. I am Mahāyāna Buddhist; she is part of a Disciples of Christ church. I am sentimental and the first to shed tears at anything; she pretends not be sentimental. You get the idea. We are, in an odd way, each other’s best friends. I’ve asked her what she thought of me in our youth. She said, “I thought you were my dumb sister who didn’t know anything, but the closest thing I had to a best friend.” Yes, she was exaggerating with the “didn’t know anything” part. No, she wasn’t joking when she said she thought I was dumb. She says her opinion of me hasn’t really changed in that she still sees me as ditzy, but she adds that she does see I have talents and apparently am one of very few people she enjoys having conversations with.

Despite and because of everything, brutal honesty included, my sister and I love each other. So there’s hope right there.

I Am For Lack of Rigor: I am also for big families, snakes, and yin yang

In the world of professional childcare, especially in school settings, rigor is often encouraged. Go, go, go from Activity A to Activity B. No talking. Hands behind your back. Line up alphabetically. Sit down. Hands in your lap. Cross your legs. Go, go, go. We’ll be late. You, do this. You, do that. Go, go, go. We don’t have time for that. Go! What’s this word? You don’t know this word? Why are you so slow every day? You stay on the carpet while everyone else lines up. Go! You’ll miss the bus!

Most of my teaching career – or technically speaking, my career as a teaching assistant – has been in classes for typically developing children. This is the typical atmosphere of a classroom for young children.  Of course teachers shouldn’t call children slow, but plenty do it.  Middle school and high school after-school programs have less rigor as the kids grow, but a good amount of this rigor remains.  After-school programs for younger kids are on par with the schools’ strictness.

I would love to have a larger family. In another easier life, I don’t doubt I would have and I don’t doubt we’d all be on a family farm somewhere. I’m one of those women who always knew she was made to be a mother. Honestly, I wish it were financially practical to have about twice as many children as I have, and even thinking about all the rigor people use in organizing students doesn’t stop my heart from feeling what it wants to feel.

Working with young people is one of my greatest joys.

Mothering all creatures is a great joy for me, extending to the animal kingdom as well. When I was a toddler at a zoo, I ran to a zookeeper who was carrying a snake. I held the snake, kissed the snake, and rocked the snake like a baby. A crowd gathered to stare, apparently. I never noticed. The zookeeper said, “I have never seen anyone do that before – let alone a little girl!”

Snakes were an obsession for years. I forgot a lot that I knew about snakes, but I still love snakes. They reminded me of myself: long, skinny, feared, misunderstood, and sticking their tongues out on a frequent basis. My tongue would often fall out of my mouth oddly when I spoke and ate, as a young child. I outgrew this some time around age eight. I’m still long and skinny, and by more than I know still feared and misunderstood.

This post is starting to not focus very well.

Post, you were supposed to be about rigorous schedules for large groups of kids.

Well, anyway, much as I am indeed a matriarch figure, I’m a pushover. I would be a rich woman if I were paid for every time a head teacher told me to be firmer. With typical classes, at lunch, there would usually be one or two kids that had to sit by someone stricter than me.

With special needs classes, that really isn’t an issue. The kids goof around far less and when they do goof around, I somehow seem to have this magic calming influence. I think it’s a case of intuitively sensing their own and not wanting to disappoint me. In fact, I know they sense their own. Kids that give almost no one eye contact have looked at my eyes without effort. Kids with autism whom I’ve never seen before have bolted to me in supermarkets.

Good lords, this post has ADHD like its writer.

But I suppose my distractedness with the topics here has proven my point. I don’t outline and plan more than necessary. I’m for lack of rigor, and I’m a very laid-back person. My husband is the disciplinarian of our house, definitely not me. I think everyone could benefit from going with the flow instead of trying to organize the entire flow.

That’s actually one of the very few things I think my parents did right with me. (The other thing they did right was raise me on drinking water.) My life growing up was very unscheduled, and while my lazy yet overly-authoritarian parents actually forced lack of schedule upon me and that was plain abusive, I do think a lack of a monotonous schedule and an unpredictable home life did a lot to give me the lax spontaneous flexibility I have.

There is no typical day in my house. That is not to say I don’t allow scheduling, of course I allow it and of course it is needed to an extent. But there is no typical day. Mine is a free-spirited household without every hour divided into things we have to do. I think that even if I had around ten children, we would not be strictly organized. Life’s too short.

My husband and his background deserve more mentioning. He was raised by a very loving woman whom I adored, may she rest in peace and may cancer be vanquished. My dear mother-in-law spoiled her sweet quirky son. The first thing she said to me was, and I quote, “What do you eat on Thursdays? What do you eat on Thursday nights?”

How do you answer that?

“Uh… Food… “

She repeated her question. I said I didn’t care what I ate, excepting allergies I knew of, and we went back and forth before my at-the-time-boyfriend told his mother the exact same things I was telling her. That apparently sealed it for her: I did not care what I ate on any day of the week.

Needless to say, my husband puts more emphasis on scheduling than I do. I think it’s endearing, personally. I could stand to be more organized than I am, so we have a balancing act going on. Still, rigor is yucky.

Part of what my husband found attractive in me is my zest for unorganized living and loving. Part of why I fell for him was for his stability and comfort. I’m an extrovert and he’s an introvert, something that produced cosmic craziness from the get-go. I would volunteer him for leading projects while he preferred being the quiet background guy everyone around us forgot about. At an auction, I told him if he wasn’t going to be more social, I would bid on things for him. Much to his dismay, that was exactly what I did. But because I’m a nice person, all he ended up buying was bags of birdseed because I didn’t really want him to spend money on things he couldn’t afford.

We go together nicely.  (If you’re new to this blog, both he and I are on the autism spectrum.  We have our similarities and our large differences, and we understand each other deeply.)

Oh, darn. I forgot the name of a small island country between the Americas where, allegedly, everyone says No Worries. You backed up your car into mine? No Worries! A young lady I know who went there said I would fit right in. She was joking, or… so I think.

According to Hasbro’s personality test for the newest version of My Little Pony ponies, I’m like Pinkie Pie who “keeps her pony friends laughing and smiling all day” and “always looks on the bright side”.  Sure, I’m not always that way, but I come across that way most of the time, especially in person.  🙂  Lack of rigor!  It’s the best medicine for life’s chaos and a better invention than sliced bread!