On a Countdown and Deeper Thoughts on the Autism Box People Make

It's winking, don't you think? Or it forgot to put makeup on one side; that's what this sunflower makes me think. So, I thought I'd share it.

One week and the girls return to school. Okay, one week and a day. A week from tomorrow. 8 days. I blinked and the summer was over. I wonder if it was endless for them? They had all that time off while I taught from 10 to noon four days a week for 11 weeks. I'd ask them, but can you imagine that conversation? Lil would immediately say, "Why are you asking?" This is her stock response anytime you ask her a question. Rosie would look at me with her huge blue eyes and that's about all she'd do, just look at me. Maybe she'd take the conversation to a completely different area, like if I remember next Saturday (her grandma is taking them to McDonalds, so every day is a rehearsal for that). Maybe she'd just wander off. Either way, I wouldn't get an answer to the question, and if I pushed it, I'd have to explain what endless means. Yeah, that's an easy concept.  If I simply explained it as a long time, I'd get a duh from both of them. Geez, Mom, it's been twelve weeks; that is a long time. And so, I won't ask. Do you blame me?

Although they are tremendous fun to ask questions to, as long as you are ready for a real answer. Don't ask if you're sensitive. My kids have taught me to have not a thick skin but a serious case of the funny bone. Their minds work in such interesting ways and they can say the most unexpected of things, make the oddest of connections (but insightful), or completely and utterly miss the boat. Regardless, if you're open, it can be completely delightful.

It can also be incredibly frustrating, head-bangingly so, and not for them. For me. Especially with my son. Especially when it really matters and I need him to get it. And he can't. Not even close. And some days are reminders that despite all his improvements, he remains significantly disabled and unable to do most of what other 20 year olds take for granted. These days, those reminders, the potential dangers and pitfalls, all of these can twist my gut, put it through the wringer, and leave me breathless with almost-weres and very-nearly-weres and could-have-beens. Close calls, in other words, and we realize that while we must work to giving him as much autonomy as he can handle, that there are inherent risks involved when we stretch, when we loosen our grasp, our oversight, and it hurts almost as bad to pull back, to tighten up, because he doesn't get it when we explain why things are changing back to an older way of doing things. It doesn't matter how simply it's explained; the cause and effect don't get through to him, and we are left wondering if it's been a matter of competence or luck and the very real fear that it's just been good fortune that nothing adverse had happened prior to the situation that makes us alter our course.

There are people out there that insist that neurodiversity people think autism is only a gift, that it is only a joy. And I suppose that there are people who actually push for only positives to be told, but I don't run in those circles, so I don't know. I know that there's a lot of folks defining other people's positions and being incredibly wrong; they build huge strawmen to tear down in order to build themselves up. There are people who seem to take autism and make it a box, and any negative, any problem, those things go in the autism box. Anything good, positive, easy, delightful, that stuff goes in the not-autism box.

It doesn't work that way. I guess it makes these people's lives easier to compartmentalize it that way, and you can see that with only bad in the autism box, it's incredibly easy for them to say they'd wipe the autism right out of the child and to think it horrendous that we would disagree with them.

So some of us don't have boxes that sort out and label the deficits as autism and the strengths as not-autism. We look at our kids and we see our kids, not divisions, not items that can be sorted into laundry lists of get-rid ofs that we label autism. And here is where one major divide comes up, and it is a false one built up by those who have made those boxes.

Curebies say that neurodiversity proponents want to let our children wallow, that we do nothing to help our children.

This is not, unless the parent is abusive and neglectful, the case, and then it sure isn't about neurodiversity.
All parents want the same thing: our children to be healthy, to be happy, to be safe, to have friends, to become independent, self-sufficient adults one day. All of us. We all want, with our children with disabilities, and our children with no special needs, for their strengths to get stronger, and for their weaknesses to be lessened. We want them to overcome their obstacles, all of them, and aim for the sky.

We all want the same thing. It's just that some of us label all the bad, the negative, the deficits, the hurt, the pain, the fear as AUTISM. And some of us don't.

My children are gifts. My children are my joy. They are also, because I am tethered so completely to them, my heart linked to theirs by Spiderman-strong webs, my greatest source of pain. Not pain for me. Pain for them, for what they endure, suffer, struggle with. What happens to them is imprinted on me, and my heart aches on days where their issues cause them pain, put them at risk, scare me breathless.

My children also have challenges. Some of these challenges won't be overcome, not naturally, and not with all the hard work in the world. That doesn't make them broken. That doesn't make them damaged.  It also doesn't mean I wouldn't do anything humanly and safely possible to help them find ways to work around those obstacles.

Once you realize that, that we all want the same thing for our kids, you can't pretend that there's a real divide. You can, though, sit up and take notice at who refuses to look at the reality and who continues to push these lies. And you can hold them accountable because it shows beyond a shadow of a doubt that it isn't about their kids, about our kids, about making the world a better place.


Socrates said...

The answer lies in greater communication and honesty in our presentation of our lives to the world.

The problem is we are often talking at cross purposes. The the "anti-Cure" wing of Neurodiversity appears to have started life as anti-curbeism, ie anti the quack mercury/vaccine-damage treatments, has become co-mingled with the Autistic rights movement's idea of failing to make small talk as not necessarily being a pathology.

And then there are The (postulated) Autisms: one from gestational/neonatal trauma, another conceived by Asperger as an inherited set of characteristics, perhaps another the result of LK Syndrome, yet another from Retts and so on...

[two more CDD and general childhood developmental delays]

And then there is Autism in the widest sense that is almost without exception present in say university mathematicians... and often the parents of Autistic kids...

So much complexity, so many interested parties and the cavernous deeps that separate us.

As for you oft expressed sense of frustration at the state of the community... well, the answer lies within the behavioural characteristics of the Broader Autistic Phenotype of almost all of the participants...

kathleen said...

I just seem to have one big great box of jumbled stuff all mixed up and in disarray and that is fine with us..
Yes-I find myself frustrated-by the divisions the divides..and there really is a lot of middle/common ground. Only level and common aren't interesting enough. Don't make a splash-don't incite fighting...It would appear that "every day" disability in a sense is boring..that unless there is a death..or a diet or treatment to dispute-people don't stand up and take notice. I find that the most frustrating thing of all.
I think of my own kids..pushing them forward while at the same time hanging on...and how freakin pissed I get when I speak to an autistic adult-who with just a few accommodations could have such an easier time-accommodations that are eons overdue..and don't seem to be happening any time soon-because of all the silliness..and I worry..as I see my little ones reach out and right now, they have me to hold them up..but what about later..cause I surely have to shed my mortal coil at some point..don't I? Good post-lots to think on..:)

Mom26children said...

Hey Stranger...
life has been busy around here, to say the least!!!
You know, funny thing...I don't wake up every morning and fret about autism.
I go to bed each night and say my prayers. I wake up each morning and follow through with life...and whatever life has in store for me and my family.
I don't dwell on the why's and why not's of autism and why my children have the disorder.
I dwell on how these amazing children of mine have stepped up to the plate to allow their very middle-aged mother to go back to work and basking in my progress as I have ALWAYS basked in theirs.
I hope I make them as proud as they make me.

Socrates said...

Ah! J! It's so good to see you here. I've loved you from a-far for ages (but not in a way you need to get creeped-out about).

KWombles said...

Socrates, yup, the good, the bad and all the in-betweens.

So many autisms that talking about autism as one thing seems almost pointless. There's a world of difference in all three of my children, and yet they are recognizably on the spectrum; and I have no doubt that mine and my husband's BAPpiness are evident to people who are in the know, and to those who aren't we're quirky geeks and nerd (neeks or gerds, if you will, or neeky gerds).

We're working to fill the cavernous deep with nice soft pillows. :-)


I thought we agreed to live forever?


I've missed you. I'm glad your work is going so well and am thrilled at your promotions! Yay! It' awesome that your family is rising to the challenges and being supportive. :-)

Mom26children said...

Hi Socrates...
"blushing"...not creeped out at all...very flattered.

I just need to get used to this "working" thing...
I am enjoying the heck out of my new promotion...even have my very own desk!!

I had a good friend call me on the phone last night and she stated...
"you do not know how rare you and Patrick are by not getting divorced for the reason you have kids with a disability"..

I replied, "if Patrick and I were to divorce...we would not use our kids as an excuse...we are adults, if we cannot work out our problems, it is not the fault of our children."

Besides, I ain't leaving and neither is he....!!!

farmwifetwo said...

I don't find autism wonderful, joyful, amazing etc... no, it sucks on a good day. Why?? B/c I don't think it's right that ANYONE should not have choices, independance or a voice of their own. That they should lose out on friends, family, jobs, travel, etc and be forced into some form of care "to be protected".

Saying that... if you ever came to our house you'd find us "normal"... We don't spend our days popping pills, doing therapy - 15min is our limit and most days this summer we haven't done that - we spend it hanging out, playing on the swings, with our nintendo's and our books and our wading pool and visiting and getting groceries... All so very normal... like all the other families.

My eldest son will be independant... but that doesn't mean I can't be upset the younger probably never will... although, at the speed he's mastering speech and life lately... never say never at not quite 9... He's already broken all the stereotypes for a severe, non-verbal ASD child...

But, it doesn't make it "ok". I read Susan Senator's blog and think... "one day that will be me"... and no... autism isn't wonderful.... but doesn't mean we don't love them and won't do the best we can for them.

Oh... and having "cured" one... They are still "autistic-like".. the "let's take everything litterally" drives me batty at times... it has nothing to do with brain transplants or personality changes... It's about becoming "INDEPENDANT"... That is, and will always be, my #1 goal for my children.

Anonymous said...