Saturday, April 02, 2016

In Praise of "And"

My mother is dying.  She's dying the long death of being 90 and having been the recipient of many of the interventions that our modern medical-industrial complex afford us. She (or rather, her doctors) outfoxed lung cancer in 1983. Last month mom and the medical folks cheated death again when the hospital where she'd been admitted found a way to treat her antibiotic-resistant pneumonia. She's back home, on oxygen, continuing her long trajectory toward the inevitable transition to death.

Meanwhile, our girl is blossoming into young adulthood – young womanhood – of the non-neurotypical persuasion.

On spring break she went shopping for a prom dress. She's determined to go and has been practicing her dance moves. She's been accepted to four of the six colleges she applied for, and offered scholarhips at each of them. It's easy to think of this as success — it sure looks like it.

Like so many high school seniors, NT and not, she is in the throes of trying to divine which offer to take, or whether to take a gap/bridge year to grow a bit more in her social and emotional dimensions, to breathe a little after the long uphill march that was K-12, to relax into the fullness of life before taking on the next challenge of navigating college.

And yet she is still autistic — or rather she has a great many of the characteristics that our culture associates with a label we call autism. We believe that she will always be, by our culture's practices of naming, autistic.  She still has all of the challenges that made K-12 so difficult, and that will most likely continue to affect her in her post-secondary life, be it a gap year, or college, or work beyond these.

So I am also establishing her now, unequivocally, as a person with a disability. That means applying, at last, for SSI. Establishing Medicaid for her. And inviting a whole new array of acronyms into our vocabulary. Where once there was the alphabet soup of PDD-NOS, ASD, OCD, ODD, ABA, and RDI, now there is OPWDD and ACCES-VR, and certainly more to come.

And where we had always looked almost exclusively at her potential and workarounds and accommodations, now we are conceding that there are undeniable and persistent limitations for our girl.

Her affect is flat. It is hard for her to do the smiling required by neurotypicals, and that is especially expected of females. She is often, quite frankly, what most observers would call rude. She longs to be fashionable, but wears a self-selected, sensory-friendly uniform of stretchy yoga pants and ultra-soft t-shirts. Hearing in any setting remains challenging, and in noisy settings it is deeply frustrating. Sudden loud noises still evoke a startle response. Her amygdala still works overtime despite the psycho-pharmology Western medicine has to offer.

So while we are celebrating her enormous accomplishments we are ready to concede that there are many things that are not likely to change, that are not likely to get easier for her, and that are, in all probability, not going away.

When I wrote here about the challenges of applying for SSI awhile back, I heard from some of my most beloved readers dismay that I would be doing this when she was such a success story.  And when I posted on my Facebook account about our girl's college acceptances, I had hundreds of messages of congratulations.  It may be the most popular FB post I'd ever written.

And so the question emerged: Why would anyone need SSI when they're a "success" story?

And that's the problem with narratives: most language pushes us out of the messy ambiguity that is life among the living into tidy categories of the fixed, of the orderly, of the conclusion. Our stories can push us to make ourselves and others into tales of this or that: of  success/failure, of neurodiversity advocate or curebie, of autistic or NT, and so on.  If we are this (succeeding in school with substantial supports) how can we possibly be that (in need of SSI and of other accommodations)?

So I find myself advocating for "and" — that single conjunction in English that makes space for it all — for this and for that. For the fullness of being rather than the sharp relief of this or that.

Paradoxically this praise of "and" also requires an embrace of this or that. Otherwise we'd be leaving out one of the most important tools we have: differentiation. Like most people I know, I relish categories and certainty. I sometimes like labels and the shorthand of diagnoses. They can be useful in so many ways.

But my girl's trajectory has taught me one thing for sure: one can never really know what something is, only how something looks and feels right now, in its own singular context, in this own particular moment which slips away into another moment faster than you can blink. The comfort of this or that, for all its usefulness, can be a trap that forestalls possibility. This and that has been the gateway to our girl's successes and to her failures, to her possibilities and to her limitations.

But it doesn't look like
she's dying, does it?
And on the other side of the continent, back out in California, my mother is dying the slow death of dementia. And I guess you know what I'm going to say now: that's she's also living the slow death of dementia.

This version of living is not the life of independence and freedom and privacy that we so love in North American culture. It's not our culture's vision of the good life (or even of the good death). It's a life that has pronounced and visible limits: the tether of the tube to the oxygen tank, the presence of caregivers in what was once her own private domain of home, a routine of medications to slow the progression of brain degeneration and calm her anxiety about the rapid diminution of her functioning.

The trouble for me, and for my family — and especially for my mother and my daughter as they are leaving and blossoming, each in their own ways — is this peculiar North American idea of success. Fantasies of independence, capacity, and individual freedom as these very measures of success damn our lived and shared experience; devalue our communities, connections, and interdependence; and thus displace so much of our full, robust, challenging, and rewarding lives.

The spaces of "and" are not easy to find and occupy, but I look for them wherever and whenever I can. I hope you'll continue to join me there, and here, at Autism's Edges as we move along through time and the stories we tell about theses times.


Anonymous said...

Don't be surprised if they will not give her SSI. I've seen it happen. Same with Medicaid. They don't look at the details you mention here regarding her deficits in the same way.

audball said...

Congratulations on your daughter's college acceptances! Like you, I know that sometimes these gains mean more worry and anxiety about what the future holds. I remember telling my husband that sometimes I wish I didn't have to think 20 steps ahead; that my idea of bliss would be one day where I could just revel in the day and *not* think about what I may have to prepare for next. So I completely understand why you would apply for SSI. You're thorough. You would love to cover all the bases so if you are not there, there's a safety net.

But know that those of us in the "internet world" are rooting for her. It is a success - as *you* and your daughter define it. And her getting accepted is a lovely accomplishment that deserves to be celebrated! It gives many of us hope. And clearly, although it's going to be a challenge, this means you and your family have been doing the right thing. She is as prepared as she can be, moving forward.

I'm truly to hear the news about your mom. She looks so spry and happy in that photo. I wish her and you all the best in coping during this challenging time.

Anonymous said...

Not exactly where you are but close enough. My son, a high school senior, has had Medicaid since early elementary school and his SSI application is currently being processed. Will he be approved (am I crossing every T correctly?), will he need it eventually, if he is approved, will it drag him down with its limits on assets? Will the ABLE Act help?

No one can know. We hope for the best and try to prepare for the worst. Does it bother son how bleakly we imagine how bad the worst can be (well obviously we are careful how we frame things).

At this late date, the IEP team at his archetypal well-funded and well-managed suburban school is still battling over his placement. He is an average enough student academically but in most other ways, so behind in social, communication, living and working skills, behaviors, social confidence...

He does not fit anywhere. But perhaps that is the very definition of his "syndrome."

I have hopes that the brain development that occurs in the early to mid twenties will propel him forward just enough so that he can manage his challenges well enough.

I did not imagine this phase of life could feel even more fraught than the early days did. So much at stake, and the path ahead so unmarked.

Ohio Mom

Autism's Edges said...

Hello Anonymous commenter from April 4!

Either Social Security is incredibly helpful (we had heard they would be) or we got lucky. The person who took our case information could not have been more helpful, and our girl has been approved. I would encourage everyone seeking assistance for their young people with ASD to not be intimated.

Hoping everyone has as good an experience as we had with SSI. I know these things can vary.

Autism's Edges said...

Hey there audball, Thanks so much for your good wishes for my mom. It's hard to see her struggling to let go of her idea of independence and self-sufficiency as the measure of her humanity and worthiness. She had to go out on her own and start earning her living when she was 16, so she's a very tough and independent person.

And that's also the problem at the heart of what we keep struggling with for Mikaila -- who will be her community, who will look out for her (even if it is not necessary to completely look after her) as she move into adulthood. She is so kind and trusting, I worry about her is a world that is happy to con any of us. I feel as though our kids have the dispositions to make them easy marks, so how do we put some insulation between them and those who see them as prey? I know we could (and may have to) set up legal guardianship, but we have delayed, because we are not sure if that would be a nearly permanent arrangement. Apparently it's rather difficult to un-do once it's done. At least that's what a social services agency told me the other day. And this is what I read online recently about it:

So we stay in-between the categories that can limit our girl's possibilities in the future, that leave open the way for greater development, but we also want to ensure that she is safe and well as she moves forward. This in-between space leaves us with complexities like today, when a medicaid phone counselor did not want to answer my very boring, non-private, non-medical question because I don't have medical power of attorney or legal guardianship.

So it's definitely a balancing act - I hope we have the stamina to keep this up!

Warm wishes to you and your family as well!


Autism's Edges said...

Hi Ohio Mom,

Thanks for commenting! You capture the situation we share so beautifully:

I have hopes that the brain development that occurs in the early to mid twenties will propel him forward just enough so that he can manage his challenges well enough.

I did not imagine this phase of life could feel even more fraught than the early days did. So much at stake, and the path ahead so unmarked.

I have heard from many people that much more development can occur in this period, so we are trying to marshall all the resources we can to support the goal of expanding development.

We have to aim low, aim high, and aim for anywhere in the middle. It's an exceptionally challenging trajectory to track and we are mostly paving the way as we're going down it.

Our kids are among the first generation to have benefitted so fully from early intervention, so the world is not quite ready for the positive outcomes of that program and the other intensive interventions that have helped our kids develop.

If we keep going together - all of us out here what Jim Fisher and Kristina Chew call Autismland, we can build the networks, pave the road, open up the pathways that our kids will ultiminately trail blaze.

All my best to you and your family,


Tiffany Dozier said...


My sons(all have asd) have been on Medicaid and have received SSI since elementary school. All the people within those organizations we have worked with have been very helpful. It's been such a tremendous help for our family.

Thanks for sharing about your daughter. It helps us with little ones on the spectrum, to see older children with the diagnosis and see how their families navigate life.

I'm sorry about your mom, she sounds wonderful. I'm glad that she has you.

Autism's Edges said...

Hi Tiffany! Thanks so much for visiting and especially for the great report about SSI. Because our girl's path to a diagnosis was so circuitous, we held off so long on the application. Also, both her dad and I have about 0 patience with bureaucracy. But our experience has been as you describe with SSI. Medicaid not so smooth. Not smooth at all, but maybe that's because we're in NYC and it's just too much for one office to handle. And so far so good with the other state agencies. Thanks also for letting me know that the blog is useful for you. I love writing it, but have very limited time to do so these days, so comments like yours keep me going on it! All the best to you and your family, mv.

Anonymous said...

Thinking of you, and I keep checking in with the blog. Please let us know how things panned out. So happy that things are looking positive for M. Big hugs to you at this tough time with your mom.

aspiegurl said...

I know all about ACCESS-VR and Medicaid as I get that stuff, too and am thinking of trying for SSI again. I tried when I was about 19 or 20. I live north of Syracuse, near Watertown, so same state as you guys.

Anonymous said...

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One of the most helpful FAQ on autism I've read,

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Special Needs School

Autistic Against Antivaxxers said...

Hi. I found you through Left Brain Right Brain.

The flat affect....yeh, I am prone to this, mostly when tired. It has just occurred to me that I might have a workaround should your daughter ever want/need one though I tend to use it for other situations.

I cannot sing. I can recite poetry and I can do a semi-musical poetry speech thing. End result: When I am expected to sing, all I do is recite the song.