WHAT'S THE BEST KIND OF PARENT?

Dear Persons,

Over the years, I’ve mostly thought it’s been an advantage for my son to have a neurodiverse mom. But the other day, as I bumbled about, I for some reason was hyperaware of how much there is I don’t get, whether because it’s implicit, or because I see things in a black and white way…

Some things I see as unilaterally wrong (it’s hard to give a neutral-ish example without offending anyone), including stuff most people see as excusable under certain circumstances (lying) or even “normal” (eating meat). I don’t actually judge others regarding these things—see below about my self-perception as nowhere near that entitled—it’s just how I myself think and live. 

Other subtleties and social niceties (and meanities!!!!) have only become obvious to me in my forties. 

It wasn't until, oh, about five years ago, that I realized some people have other priorities in their logic besides kindness. 

And I’m so literal that I didn’t even understand that being literal was a thing. 

For a REALLY LONG TIME.

Another thing I’m finally realizing is that there are a lot of things I may not have understood along the way. 

I knew from a very age that there was something different about me and my brain. To be more blunt, I “knew” there was “something wrong with me.” (This was unfortunately an impression that was initially created and then reinforced by those around me. It was, in some ways, a very different era.)

So I developed a lot of coping and passing (as “normal”) mechanisms. As an adult, I definitely pass as “getting” more than I get, and as (I hate this term, because it SO CLEARLY is a neurotypical one!) “high functioning.”

Still, how many people have thought I was a total wack job? How many times have I missed the deeper point of what someone was saying? 

I know I’ve taken people’s words as unkind or marginalizing when they weren’t meant that way. By the same token, I’ve sometimes hung around people who didn’t want me around for way too long, or accepted cruel behavior (toward me) on the basis of my own self-determined inability to “understand what’s really going on.” 

I guess I’m becoming aware that, for my son, having a mom who he can relate to and who understands his neurology definitely has its strong points. But it’s also probably hard for him that I'm “weird” or hurt or confused or clueless a lot of the time. 

Also, he thinks I’m a total loser, so he’s not always pleased to hear about our similarities. 

But there’s more. I found out I’m a Hufflepuff! [Non-Harry Potter fans might want to skip to the next paragraph.] All these years, I was cluelessly convinced I was a Ravenclaw/Gryffindor. In retrospect, I realize I was avoiding taking the sorting test because I was afraid it would reveal I was neither as clever (Ravenclaw) nor as brave (Gryffindor) as I held myself to be. Nope, I’m not. I’m a jolly, kindly, well-meaning, bumbling Hufflepuff. 

So I got to wondering whether it might have been better for my son to have a parent who was more, um, with it. Someone who could better play by the (unspoken) rules and sort of…finesse things in a way that I, in my bull-in-a-china-shop way, cannot. 

How often do I fail him because of my own neurodiversity and cluelessness? Would the best parent for him be someone who’s more savvy? Someone who’s more “successful” by real-world standards (which would include financially)? 

Wouldn’t it be great if he had a mother who understood how to teach him to really be successful—in real-world terms, taking effective, reality-savvy steps—instead of a literal-bumbling-weirdo-Hufflepuff?  

At the same time, I do know I love him exactly as he is and fight for him with all I’ve got. 

And I’m all he’s got, mom wise.

I realize this is a false dichotomy in some ways. Plus, I'm not really addressing the many other parental concerns and diverse ways of parenting, not to mention parental situations, from marital status to economic status, ethnicity to gender identity...

But it still sometimes feels like there's this overarching and fundamental split between those who share differences and those who do not, one I continue to work to mitigate however I can (in our particular area of difference as well as others). 

I imagine parents and loved ones who don’t “get” autism can probably relate from the other direction. Maybe they might not directly, personally understand why someone who’s neurodiverse can’t just “act like other people” or doesn’t perceive the world as they do. 

But they “get” that world—and can navigate it way better than most of us with differences. So they can help their children or loved ones with differences figure out how to get by in a world that’s not designed for them. 

I finally figured out that, in this context, good parenting is about being open to learning and growing, being curious, being accepting. To bring all that together, trying to understand is probably what makes the best parent—along with love, of course. 

So I guess whether you’re a little (or a lot) different and trying to understand people and institutions, or you totally get all that stuff but are trying to understand your kid, or anywhere along that spectrum—you’re good! 

Especially if you’re a Hufflepuff.

Just joshing. EVERYONE who’s lovingly trying to understand wins.  

Love,

Full Spectrum Mama

P.S. If you have a minute, consider answering some questions for a student at Drexel University who is working on a project about how much time parents of children on the spectrum spend on paperwork. Find her survey here. (I am in no way affiliated with this, but was asked to spread the word. Drexel actually has an apparently awesome program for college kids on the spectrum, BTW.)

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99 Problems

Dear Persons,

I can’t be the only person who sometimes feels the world is a minefield for anyone who is not a white, middle class or above, straight, neurotypical, cisgender, male, typically abled person with a resolved and “good” citizenship status.

Or maybe I am just an oversensitive rabble rouser. 

In any case, when I got this "special" handout after a medical appointment for my son:

...I felt aaaaaaalllllll the feelings. 

It’s hard to even respond effectively or “unemotionally” to these things that blindside you when you are just trying to get your kid’s toe looked at. (Or read a book, or go to a grocery store…I mean, you know what I mean: Unfortunately, discrimination and ignorance can pop up just about anywhere.) 

Here’s what I sent to the whole office, including individual doctors:

Dear [Medical Professional/Office],

Please see the attached partial shot of [G]’s handout (from a visit for an infected toe) from last week. 

While there is much that I could say about this — whether from a moral, legal, ethical, neurological, medical, and/or personal perspective — I will limit myself to this:

Imagine how you would feel as a human being (never mind as a CHILD) to see your way of being (the way you were born) casually maligned as a “problem” on a random medical take-home handout. 

While an individual’s spectrum status may arguably be relevant in some medical situations, an ingrown toenail is probably not one of them. In addition, your terminology is outdated. And your framing of this neurological difference — which in fact also brings many gifts — as a “problem” is quite simply cruel. 

Knowing your office and Dr. ____ (clearly a caring person), I have to assume this is an oversight. I ask on behalf of my family and all others with differences that you stop this practice and any others that may marginalize or denigrate your patients, however unintentionally.

Sincerely,

[Full Spectrum Mama], Ph.D. 

The Full Spectrums do have 99 problems (if you get my slightly inappropriate reference) — probably more like 999 — but “Asperger’s disorder” is not one. 

Love,

Full Spectrum Mama

Update: The doctor called and left a message apologizing and claiming oversight. I called back and left her a message saying I trust nothing like this will happen again to anyone in her office.

Le sigh. 

 Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

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GOODBYE, NAMEY OLD NAME THE NAME

Dear Persons,

There’s something I’ve been struggling with for some time now.

To make it less loaded as a puzzle, let me start with a lighthearted example. Let’s say there’s this thing we call a chipmunk. We use that name to refer to a particular type of creature, a small, orange-y, striped, cute one; and to distinguish it from the larger, less-cute (to some), similar-but-usually-grey animal we call the squirrel, not to mention any number of other rodents and animals. It’s useful to have a shared name for this distinct creature. And we may even have other names for individual chipmunks, such as “Little Jerk,”  and “Garden *&%#$.” But we always know what chipmunks are — and what they are not. 

But what if we found out that the very word chipmunk was problematic? What if chipmunk was another name for, Oh, I don’t know, a possible Nazi-sympathizer? 

Besides it being a commonly-understood term — and an erstwhile diagnosis/label (one no longer widely accepted in the professional/medical/neurological sphere) — why do we use the word Asperger? I had to take a hard look at my own usage and I realized that — although I do avoid the term “high functioning autism” (or HFA), because I think it has questionable implications and is implicitly comparative of human beings — I have typically used Asperger somewhat in the same way. That is, I have unconsciously used this term to make it clear that my son is the kind of autistic person who has special interests and above-average intelligence, etc. That was wrong of me — as continuing to use this term would be. 

At the same time, I also used the term to describe him because the general usage/understanding of this term really fits G as he is: highly verbal, quirky, not so great with social cues…But that’s not going to fly anymore. 

Autistic and on the autism spectrum seem fine to me, but a little too defining/labeling for day-to-day use (I do not like autism spectrum disorder as I do not frame different brains as inherently disordered!). From now on, I am going to use the term neurodiverse. Yes, it’s slightly meaningless (a la “tasty” — oooh, it has a taste!), but it neither refers to a kind of human being by the name of a criminal nor distinguishes between neurotypically devised “levels” of “functioning.”

Thanks and love,

Full Spectrum Mama

P.S. I completely understand and honor those individuals and organizations who’ve chosen to stay with this name, or who chose it prior to knowing about the complex history behind it. This is my choice, for myself. 

 Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

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"MOTHER APPEARS DISHEVELED"

Dear Persons,

I was listening to NPR not long ago and ended up sobbing in the car. Again. The segment that got me this time was on voting rights (read it, and possibly weep, here), and how in many states persons who have appointed guardians do not have the right to vote. Whether to apply for guardianship of my son is probably the question I struggle most with on a day to day basis (followed closely by even more terrifying questions about what will happen to him when I am gone). The thought of my brilliant, politically-engaged son being unable to vote was one more tally in the non-guardianship column. I want to always err on the side of presuming competence, yet I always want my child to be able to, you know, live...sometimes despite himself.

I mention this not because this matter is resolved, but to point out that for parents with atypical children, and for people of difference in general, the world out there (your basic radio show, and so on) can be a bit of a minefield.

I have many friends – who I still speak to! – who like to say “Oh, it’s hard being the parent of any kid.” Sure, I will give you that. And I will gladly agree we most of us love our kids the same agonizing, rapturous, heart-expanding amount. But I am not Full Spectrum Mama for nothing: I have one typically-developing child and one who is developmentally and neurologically atypical and I can assure you it is not the same kind of hard! When your child develops differently there may be taken-for-granted, essential life skills that he or she may develop late...or never.

The idea that G will “grow out of it” – whatever “it” is – is thus often meaningless and certainly not reassuring.  For example, all his life G – despite assiduous and almost-constant attempts on my part to change this - has used his clothing as a combination napkin/tablecloth while eating. And that’s when he notices he has food on his face or hands...which he usually doesn’t. In the scheme of things, I’d like to think of this as minor – I mean, G is extraordinarily KIND and FUNNY and SMART – yet how will this be viewed by a potential employer? Or partner? (And no, I do not mean typical sloppiness, my “all kids have challenges/all boys are slobs” friends.)

Or perhaps your child is or you are (as am I) at the other end of the noticing/reacting spectrum and barely able to function because of obsessive compulsive (OCD) needs and/or sensory overload from crumbs and the like?

Maybe G’s table manners will improve someday. Maybe someday I will be able to ignore a single crumb on my finger. But sensory processing differences (SPD) and other neurological differences are often integral to who we are, part of our very biology. Neurodiverse and differently-abled persons may develop neurological, practical, and/or emotional strategies to function in a world that was not designed for them – and sometimes doesn’t make sense - but there is much we will never “grow out” of...

My conservative yet highly clinical estimate is that I worry about G a million, billion, gazillion times more than Z, my typically-developing, typically-abled daughter, even though she has had her issues as all children do...

I usually write more from the perspective of a child advocate, or in efforts to spread awareness and acceptance of difference. This time, I wanted to write about what the parents I know who have children with extraordinary challenges feel like a lot of the time, both to acknowledge and honor them (us) and to spread awareness on this front.

I am not complaining – my child brings me extraordinary wonder and joy every minute of every day – I am explaining.

Those of us with who are different, or have children with differences – or both! – have to navigate more-complicated, often “inappropriate*” (to us!) environments and interactions – environments and interactions that may feel overwhelming, cruel, arbitrary, opaque -- almost all the time. In a very real sense, the “problem” is the world, not our kids/us.

My Meeting Friend became my dearest and most-cherished support-network-of-one when mutual friends who knew our children kept suggesting we connect, and then our paths kept crossing en route to and from Meetings, therapies, etc. etc. My Meeting Friend was once at a Meeting – of which one has exponentially more with an atypical child (and yes I know this from personal Full Spectrum experience) – and glanced over at what one of the “professionals” there to evaluate and assess her son had written on a pad and read, “Mother appears disheveled.”

Now this is a mother who has willingly and bravely made changes and sacrifices for her child beyond what most could even imagine. That very day alone I am positive she had already cooked several different healthy breakfasts taking all individual food allergies into account, carefully planned out ways for both of her children to have their own kinds of successes (including – egads! – athletic successes!!!!) and learning experiences, gone to great lengths to ensure social interactions and a beneficial sensory diet for her son, written several emails regarding grades, social situations, IEP, 504,etc.,  made sure her other child felt “just as important,” oh - and worked at her job...** With a smile on her face.

I am impressed she even had clothes on after what she has been through. But there that note was -- amidst, I am sure, other stuff (such as “EXCELLENT parenting!” and “Kid is PERFECT, just a WEENSY bit unsuited to the average boring old, sensory-/social-nightmare classroom”)  --  ...”Mother appears disheveled.”

Figure I – Disheveled Mother

...Ya think? And I wasn’t there at that particular Meeting, but I do know that she has had the grace to laugh about it ever since.

My friends, do you appear disheveled or know someone who does? From crying in the car, maybe? Are you disheveled on the inside even if you appear “heveled” on the outside? You are in good company.

Much Love,

Full Spectrum Mama

* “Inappropriate” is such a trigger word for many on the spectrum. There are a lot of “normal” things we find “inappropriate,” believe me (and there is no monolithic “we” in either neurodiverse or neurotypical contexts!). Nonetheless our children are often told, especially in school, that X, Y, or Z is “inappropriate”...One hopes that some consideration is given to the possibility that people who perceive and process differently may have different standards – and not always assume that neurotypical standards are the correct and appropriate ones. 

** How do I know these things? Because I know my Meeting Friend. But also because I and most other parents I know who have children with differences do these types of things Every Day. I just wrote a letter to G’s teachers and “learning specialist” while I wrote this footnote.

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HIGH SCHOOL PRAYERS

Dear Persons,

This post is a sequel to MIDDLE SCHOOL PRAYERS. I revisited that post while preparing this one, and found that it’s pretty much 100% still relevant.

Similarly, I would use the same disclaimer: basically: please feel free to substitute institutions (workplace? family? elementary school?), gender (I’ve occasionally written “he” because the child in question is my son, but I mean these prayers to be INCLUSIVE), labels, and language (God? Great Spirit? Goddess? People?) that feel right to you if you feel moved to share these prayers.

Dear Universe,

Thank you for my child’s safe passage through Middle School with our sanity relatively intact. If it’s not too greedy, I would like to add on to my Middle School Prayers list. Following, please find a number of additional Prayers more specific to High School:

1. May my child not get lost in a larger setting. 

2. May my child not get anybody pregnant (for biological                 girls, please substitute “get pregnant”).

3. May I dole out the RIGHT amount of freedom to                     my child.

4. May my child always know deep down how much he                   (she) is loved.

Pretty simple requests -- and all probably shared by most parents and guardians of High Schoolers-to-be, right?

Yet, as a parent of a child on the autism spectrum with sensory processing differences (SPD), each Prayer has multiple layers for my family, as they must for so many families with significant differences. Please, dear readers and dear Universe, allow me to elaborate –

1. About the not-getting-lost bit. My child is one of the deepest, smartest people I know. He can read ANYTHING. But write? Not so much. Focus? Similar, unless we are discussing a special interest. Dyspraxia, SPD, and a general lack of executive function make mainstream school environments and requirements highly challenging for my child.

Add in a major life transition, a much larger student body, and MUCH less in-class paraprofessional support, and we have what feels to me like a perfect recipe for my child getting lost, falling between the cracks, getting shunted through...

During the High School Transition Meeting, when his case manager kept saying, “We see that all the time” to concerns raised by his Middle School Team, it did feel reassuring, but it also felt like G was being stereotyped. Like any child, G is an individual and I hope for him to continue to be seen as one in High School. I’m not sure yet what “success” will look like for my G – will he reach his academic potential in this setting? will he want and/or be able to go to college? – but I want him to have the chance to reach for it. I want him to know he is known.

Dear Universe, may our children find their own healthy, rewarding ways of learning, growing, and interacting in High School. May they be treated fairly, and may they be accepted and cared about for who they truly are by staff, teachers, and their fellow students.

2. Re: pregnancy.You know how all teenagers have lots and lots of hormones and very, very little sense? Well, imagine all the hormones with way less sense than that, even. Kind of makes ya nervous, right?

Then, dear Universe, we are on the same page. May our children have the opportunity to continue being children just a while longer, please.

3. Freedom. The vast majority of parents fully expect their children to be independent at some point. A small minority know with certainty that their child will never live on his or her own. We are in-between, and it’s a tough place to be. I want to do right by my child, who is still in the very beginning stages of developing life skills like judgment, executive function, common sense, perseverance. I want to respect him – and he’s very worthy of that respect, with all his wonderfulness and brilliance and perfection (said his mom). But I also need to make sure he doesn’t make irredeemable mistakes while these life skills are still emerging. And I need to be vigilant for the long term should some of those skills never emerge.

The transition into High School feels like the first time I will really, finally need to begin to actually figure out how our family will tackle these weighty issues.

Will G ever drive? I’m not sure. Should he? Probably not, at least any time soon! (I didn’t drive until my late thirties...) Will he desperately want to? Probably.

Will G ever be able to live on his own? Probably not without some help, whether from a case manager or partner. But I am not sure! He’s surprised me before with huge developmental and personal growth. I know he envisions an independent life for himself, but I also know he has no idea what that would entail. I’ll need to begin looking into guardianship options fairly soon if it seems like he won’t live on his own.

There are significant financial resources for some people with some disabilities. Would G feel insulted by the suggestion that he cannot create his own success on neurotypical world terms or glad to be able to focus on his interests? The huge part of me that has enormous respect for G dreads even raising this matter with him. Yet...when he tells me things like “there’s no reason to cut toenails” or I watch him approximate his idea of how a chore really should be done – and he has many original ideas about regular stuff like this every day – I cannot imagine him keeping a job or household. If he doesn’t “get it,” he’s not interested – so I imagine the key in the long term will be for him to be invested in daily life in such a way that such things as cutting toenails (and other hygiene matters), paying bills, putting in time earning a living, etc. will make sense and feel compelling to him on a level where he can achieve these basic skills. Here’s hoping High School will instill some good habits in this regard.

And then there’s the question of what will happen to him after I am gone if he can’t live on his own post-High School and into adulthood, which is the deepest, most constant fear of all of us with children (including grown children) who can’t necessarily navigate the neurotypical world in typical ways.

Whew – I am glad High school is four years long!

Dear Universe, may my child always have a safe home – where he learns, where he lives - where he is free to be himself.

4. On Love: Recently, my behavior generally gets interpreted by my teen in one of two ways: I am either invasive and embarrassing (smothering) or I’m uncaring and have hurt his feelings (abandonment). I can’t win. This is developmentally appropriate (see above hormones, lack of sense, etc.), but the combination of extra social and academic challenges he will experience make his feeling consistently loved even more of a priority. This, even as his interpretations and perspective are inflected by different ways of interpreting/perceiving my intentions, feelings, and actions - and those of others around him. It remains to be seen how this dynamic will play out in High School.

Dear Universe, despite his developmentally-appropriate sour attitude and unique, quirky ways of processing interactions, may my child know he is loved – enormously – exactly as he is as he makes his way into and through High School.

Dear Universe, for all the children privileged to be going back to school, and for ALL children, I wish these good things and more.  

Love,

Full Spectrum Mama

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

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