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.
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!
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. 
