Autism

All posts tagged Autism

Where I’ve Been

Posted by Ladytea on May 17, 2018
Posted in: Dragon Mom, Fiction, Writing. Tagged: , , , , , , , , . Leave a Comment

One year ago, my son started at his new school.  This marked a major turning-point in our lives—the end of an exhausting struggle with the local district and state that spanned years and, at times, pushed all of us to the brink of despair.  Prior to this, the Kinglet’s situation was so dire, his mental health so precarious, that we’d had him homebound with (largely ineffective) tutors and therapists for most of fifth grade and part of fourth.  Even after we successfully argued with the DOE for alternative schooling, it still took a quarter year to find a suitable placement—none of the special ed schools that we liked wanted to take a risk on a volatile (that is to say, “challenging”) child, and none of the ones that would take him inspired any confidence (most were just a step up from juvenile prison).

It was in late April of 2017 that we found a match with a small Philadelphia private school that focuses on higher-functioning ASD kids.  The transition was not easy, but philosophical and pedagogical differences between this school and our home public school district were manifold.  Over the past year, the Kinglet has made remarkable progress, not just in catching up with the schooling that he missed being homebound, but also with the life skills he so desperately needed but wasn’t being taught. While we’re still not able to fully relax (will we ever?), we’ve never held our breath this long without a major setback, a devastating crisis.  Our latest IEP meeting was a (comparative) breeze—the changes are minimal, agreeable, reasonable.  In short, he’s doing really, really well.

MEANWHILE, our daughter started part-time preschool in the Fall—an integrated special ed preschool, actually, in

The writer from her sickbed, with guest.

the same district that wasn’t up to educating our son.  So that’s fun. Compared to the Kinglet, the Empress’ developmental delay (mostly in speech) is relatively mild.  In fact, it’s about as mild as it could get while still qualifying for spec ed intervention—although the nuances of “mild” and what that means in terms of services has already become a subject of debate between her parents and her team.  Silver lining, having been through all the fires with the Kinglet we’re neither ignorant of our options nor shy about using them, so the Empress has already had a top-notch third-party evaluation for speech & language, which we are about to bring to the IEP next month.  Otherwise, the Empress is blossoming into a hysterically funny and sassy little pixie who knows herself and misses nothing and lights up our world like the miracle she is.

As for me… having both kids relatively stable and out of the house at least *some* of the time is lovely, although it’s not as revolutionary to my life as I’d imagined it would be.  I had planned to use this time to work on a novel, and I tried, but by December of last year it became clear that I’m blocked.  I’ve been creative in other ways, most notably with my online lit journal, which is very satisfying, but producing work of my own has been incredibly challenging.  At times even composing an email was beyond me.  I’ve made progress—some blurbs, some poems.  But no fiction.  Given that the fellowship I won this year is for fiction, this is especially demoralizing.

I have spent a lot of time thinking about this block.  I spent all of 2018 thinking about it, actually, up until my health took a nosedive in late March/early April.  It was actually a relief to think about something else (how sick I was), except then I got so sick I could barely hold my head up, and that scared the shit out of me.  Not being able to work, like, at all, not just writing but all the daily things I HAVE to do, like care for my children…

Although my health issues are not resolved yet I am doing much better now.  I’ve had some time to catch up with the minutia, and even a few quiet days to consider where I am, and what’s next.  Which is what this post is really all about.

I think the long creative block was (is?) recovery time.  Enforced by who, I don’t know (and I’d like to have a word with someone about it, yes I would).  I didn’t *want* downtime, but the truth is I wasn’t well.  Things got better with the Kinglet over a very short amount of time, but the trauma that we—that I—went through before that was intense and extensive and, in all seriousness, could have killed me.  That isn’t something you just shrug off, apparently.  Why I couldn’t have worked through it with writing, IDK, but anyway.  That’s how it went down.

Now I think maybe the sickness was an extension of that.  If we’re going to look for existential reasons for things, maybe the creative downtime wasn’t enough—maybe thinking about it obsessively, even thinking about it in terms of self-care—just wore me down until my body couldn’t take it.

Or maybe it’s just a shitty fucking coincidence.  Or maybe I’m cursed.

Either way, IDK if I’m out of the woods NOW, creatively or physically.  I know I feel different, but I don’t know what that means.  I don’t know what to do next.  I don’t know my purpose, or how best to eke meaning out of whatever life I have left.  I don’t know why the clock always seems to read 11:11 when I look up. I’m trying to work all of that out.

I’m trying.  That’s pretty much it.

My Son is Not an Epidemic

Posted by Ladytea on May 16, 2018
Posted in: Advocacy, Dragon Mom. Tagged: , . 2 comments

An anti-vaxxer in my local Autism parent FB group posted about the latest CDC stats (suggesting an increase in childhood ASD diagnosis over previous years, up to perhaps 1 in 59, or thereabouts) . She describes it as a public health emergency, basically trying to rally an Angry-Mom revolution to force the government to take the Autism “epidemic” seriously.

On the surface, I agree that more research is necessary.  We still have a lot to learn about Autism, biologically speaking, and we have a looooong way to go in terms of changing the social and systemic paradigms that make it harder for people on the Spectrum to navigate their lives.

I have a problem with words like “emergency” and “epidemic”, though.  For one thing, they portray these rising statistics as an Autism outbreak—something happening more frequently—rather than a product of how we count.   Our awareness of Autism is increasing, we’re looking for it more closely and more broadly, thus we’re finding it.  That doesn’t mean it wasn’t always there.

My kid, for example.  Extremely verbal, academically above-average, restricted interests (video games & spongebob, at the time) mainstream enough to be shrugged off as normal, absence of obvious stimming behaviors (at the time).  It took almost eight years to get an appropriate diagnosis even in the midst of all this increasing awareness (2013), and still it was a battle to get all the “experts” on the same page.  A generation ago, he would have been overlooked, diagnosed with something else, or not at all.  “Bright but unpleasant” maybe.  And he would have been worse off for it, I have no doubt.

But my bigger issue with the “epidemic/emergency” narrative is that it’s flat-out insulting.  Even when the alarmist moms leave mention of vaccines out of their rallying-cry, they’re still pushing this notion that Autism is a disease, a horrible thing that crops up and eats people (read: through vaccines) and must be stopped.  They talk about how much suffering Autistic people endure because of their Autism, they talk about what a drain Autism represents on public resources—the costs to educate, medicate and maintain them.

As a mother of a person with Autism I can speak for exactly one person with Autism (and that only a step removed, and in translation), but the suffering that my son and our family have experienced firsthand is not caused by Autism.  His (and our) suffering comes from misunderstandings; it comes from prejudice and a dearth of resources and opportunities, things which result in the marginalization of an otherwise healthy and happy person who happens to be different from his peers.

Likewise, when these alarmists bemoan the “astronomical costs” of Autism to our communities, our schools, what they’re really saying is that we should protect the status quo—that cookie cutter approach to education and society at large—rather than invest in new paradigms, new ways to teach and employ and treat and engage, ways that recognize and embrace neurological diversity.  They are saying people with Autism are too much trouble, and need to be snuffed out.  That’s ableism, at best (although I think there’s another word for it)—and yeah. I have a problem with that.

My Child’s Meltdown Belongs in Your Classroom

Posted by Ladytea on August 10, 2016
Posted in: Advocacy, Dragon Mom. Tagged: , , , , , . Leave a Comment
summer reading program

The Kinglet, summer 2011

The following essay popped up in my Facebook feed this morning.  I originally wrote it in 2013 after we had to pull my son out of a creative arts summer camp.  He was easily frustrated, cried a lot, had to take lots of cool-down breaks — all things that are normal for a child with autism (which we didn’t know he had, at the time) and an emotional disorder.  I’d put two weeks of my summer aside so I could be there as his coach, but it still didn’t work out. The art teacher treated him (and me) like he had a contagious disease, and the administration (my employer, and friend, at the time) threw up her hands, because what can you do, you know? We have to think of the other children.

I cringed when I saw it again this morning — not because of what I said in it, but because this is a problem – a prejudice – that we’ve been battling all his life. In 2011 it was summer camp at the local Lutheran church — nice people, not equipped to handle him.  In 2012 it was the sports camp sponsored by the City of Newark.  Before his diagnosis, it was the school system that dumped him in an “intervention” room (closet) for most of the school day, or suspended him.  Last year it was the new gifted teacher that didn’t want him in her class, even though his test scores are through the roof and rote remedial learning bores him (literally) to tears.  Why should the other gifted children have to listen to my son cry, right, or witness him being removed by a para, or do their work like good boys and girls while my son audits the class because he’s too stressed that day? That’s not fair, is it? We have to think of the other children.

But you know what? No.  No, your child doesn’t need to be sheltered from my child.

My Child’s Meltdown Belongs in Your Classroom

(Summer 2013)  I’m trying to be professional and understanding about things that have happened this week, but as a parent, my heart is a little broken.

When asked to consider the place of children with emotional and behavioral disorders in an educational setting, the first concern of most people seems to be for the benefit of the other children, and the teachers, and the harmony of the group. Which makes sense, right? When you first think about it.

But I ask you to consider this. A generation ago, even less, these same arguments, based on misunderstanding at best, prejudice at worst, kept children with developmental delays and other handicaps from attending school. It was only with activism on the part of parents and child advocates that this attitude was challenged, and changed, resulting in laws that protect the right of ALL children to an inclusive education, in the least restrictive setting, with all possible and reasonable accommodation.

These days, we don’t much dispute the right of a child with physical challenges to take part in the same activities as healthy children. When it comes to children with emotional and behavioral disorders, however, there is still a pervasive prejudice. There is a perception that such children are bad, that their behavior is willful – they are punished, rather than worked with, and they are marginalized.

The truth is, such a child has as much control over his condition as a child with epilepsy, or with Tourettes, or with Autism, or Cerebral Palsy, or with any other host of impairments can control theirs. That is to say, given an opportunity, and a conducive environment, and appropriate supports, they can succeed as well as any child.

The questions I am asked, as a parent of a child with an emotional and behavioral disorder… Why should other children have to suffer when such a child acts out in the classroom?

– Because these people exist together in the world.
– Because discomfort over differences is healed by familiarity, compassion, and understanding.
– Because segregating “normal” children from “abnormal” children when it is not strictly necessary will not prepare either one for living in an inclusive world. It can only further misconceptions and prejudice. It can only distance the special needs child from a sense of belonging and success.

Why should teachers have to interrupt their class to deal with a child who acts out in the classroom?

– Because every child is different. Some have learning disabilities and need help understanding their assignments. Some children have physical challenges and need help maneuvering their world. Some children have language barriers, cultural barriers, problems at home, problems of self-esteem, problems keeping their breakfast down, problems sitting still, problems paying attention, problems with you.
-If you are a teacher, presumably you are so for a reason. Please don’t shy away from something because you don’t understand it.

With the rate at which children in our society are being diagnosed with behavioral and psychiatric disorders, and in the wake of national tragedies that have dragged the state of mental health care into the limelight, I believe this is something that needs to be said. This is a conversation we need to be having. This is a situation that needs to be challenged.

At the very least, it’s something I need to get off my chest.

Hey there, novel. Remember when we used to hang?

Posted by Ladytea on March 20, 2014
Posted in: Dragon Mom, Fiction, Writing. Tagged: , , , , . Leave a Comment

I’m meant to be working on my novel today.  I’m all set up in my comfy chair with my laptop and my coffee, but instead I’m turning to you, blogosphere.  Because that’s almost as productive….

writers block

It’s been ten months since I did anything with COVENANT.  Last spring I revamped the outline and rewrote the first few chapters.  I was really happy with the way they turned out – I even included an excerpt in my application for a major award and went on to earn an Honorable Mention over dozens of applicants.

But then I put it aside.

It was supposed to be just a summer break sabbatical.  My son, the Kinglet, would be underfoot all the time – there would be swimming lessons and summer camp and far too much noise under one roof for me to get anything done.  I intended to start back up in September, but then it turned into a So-it-turns-out-the-Kinglet-has-Autism-but-the-School-wants-to-Fight-Against-Services-Oh-By-the-Way-I’m-pregnant-Hello-Morning-Sickness-Happy-Holidays-More-Morning-Sickness-Get-the-Nursery-Ready-Why-Am-I-Still-Throwing-Up-Oh-Look-It’s-Spring sabbatical.

Don’t you hate it when that happens?

Now my novel is like a friendship left too-long untended… you think about it, you say to each other “we really should get together soon”, but so much time has passed since anyone made an effort that you’ve crossed into awkwardness and no one really knows what to do about that. I miss it – I know I need to do something, especially now, before the baby comes and steals my sleep and every ounce of creative energy, but gah, where to start? Do I even know this novel anymore?

awkward

I guess the only thing TO do is just dive back in, no matter how awkward it feels… just open up the file, find the place where we left off and … start writing.  If it’s anything like real-people friendships, pretty soon we’ll be sharing mental martinis and tripping over things to say to each other.

drinks

It’ll be like no time has passed at all. Right?

Right?