Articles and blog
posts on the early signs of SPD (sensory processing disorder, which I call
sensory processing differences) and autism
fill me with a mixture of recognition (yes, much is familiar), trepidation (at
this point I’ve reached a certain level of saturation and also seen many
stereotypes and errors), annoyance (ditto, plus the occasional offensive or
condescending bits can set me back for days), and, sometimes, gratitude (after
all, some of this stuff could be very helpful to parents – and most writers
mean well!).
I usually find that
I am holding my breath as I read, waiting for the triggers...yet I am compelled
to read, always hoping to learn more about our neurodiverse world.
My son G was
diagnosed with SPD at three, autism at eight. Being a bit spectrumesque myself,
I would never have thought there was anything about him that needed to be
evaluated (his evaluations were always at the behest of his teachers) but in
retrospect a few things stand out.
My earliest memory
of being aware of G’s possible difference from his “normal” peers occurred in
an infant massage class. We mothers – this was in the East Village, in New York
City, but yup, all mothers – were told to sit in a circle. I don’t remember
precisely how old the babies were – early parenthood is kind of a blur – but
they were all quite young, a few months old at most. We had pads and brought
blankets and placed our babies on their backs on those blankets. We were given
diagrams of massage strokes and instructed in proper technique for stroking and
soothing our babies.
Infant massage was
meant to be a bonding exercise. To stimulate our babies’ brains and help with
their digestion! To make them happy! Healthy!
Except - my baby
didn’t seem to be with the program. While all the other babies enjoyed a free
and loving massage – yeah, try getting that
a few decades down the line, babies! - my darling G was having none of it.
Figure I – Infant
Massage Class. Not Shown: Ashamed Mother.
As soon as I tried
to massage him, heck, as soon as I lay him down on his back, the screaming
would start. Sure, there was the occasional peep from another baby, but nothing
like G’s agonized cries. I actually tried three sessions before giving up in
despair.
Clearly, I was missing
some important mothering skills. I blamed myself, of course.
When G was a baby,
I thought of myself as someone who accepted all people, someone who would never
discriminate on the basis of ethnicity, gender, sexual orientation...Someone
who accepted and loved people of all sorts. Yet I knew little to nothing about
neurodiversity!
It would have been
helpful to me as a new mother to have a positive concept of other kinds of difference,
an idea of the incredibly wide ranges of neurology, physiology, psychology,
sensitivity, sensory processing etc. that make up human beings. Obviously, this
would not have led to shifting blame to my baby! It just would have made things
make sense.
It would have
helped to know that my baby needed deep pressure, not fluttery strokes that probably
felt like torture to him. It might have been best to keep him partly or fully
wrapped so that he could locate his body safely in space, instead of flailing
around. He never liked being moved; there might have been better ways to
transition him.
Instead, all I knew
- in that context, with the limited knowledge I had – was that something seemed
wrong. Since I myself had also always
been “different,” this initially added to my disorientation and self-blame.
These moments keep
coming, but now they come cushioned with fundamental commitments to diversity,
acceptance, and hope.
When you and/or
your child live(s) with an invisible, complex difference, explanations and
strategies can be elusive and imprecise. I still sometimes don’t know whether
my child needs help; and when he does need help I don’t always know how to help
him. Sometimes I try to help him in unhelpful, unwanted or unnecessary ways, as
do others. Other times we miss the boat and G is on his own with his challenges
when some wisdom or support is sorely needed.
When G was
screaming in the otherwise serene and harmonious infant massage space, I knew
he was deeply uncomfortable, but I didn’t know that he had SPD, or that he was
autistic, and that his sensitivities would benefit from a very different
approach. Parents who recognize their children in “early signs” lists will I
hope have important tools at their disposal, not least the knowledge that all
parties concerned are doing their best – and that that is just fine. For the
Full Spectrums, the labels that apply to us are mostly useful in that regard.
There’s still so
much I don’t know, but I do know our differences are not our “fault.” I know
that what is “wrong” is not us but a
world that is primarily designed for the “average,” “normal” person – whoever
that is.
I know that I accept and
celebrate G exactly as he is. Same for me. And you. And you, and you, and
you...:
This blog is a safe
space for people to recognize a full spectrum of human being, and to explore
how we might make the world a more welcoming place for all. Parents and
caregivers who are searching for ways to understand, connect with, and support
their children, individuals who are exploring their own differences, early-signers
and adult-figure-outers, you are all welcome here.
Please visit the
other sites below for more informative and inclusive posts.
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!
Yes to all of this. I remember being so distraught that my baby didn't want cuddles, never mind a massage. I also chalked it up to some deficiency I had as a mother. I am so thankful for your commitment to spreading the "neurodiverse" message!
ReplyDeleteWish we could hug our early mom selves! In a way that feels helpful of course ;)
DeleteThanks and love,
FSM
She's back!!! Yay! I've missed FSM. Great post. I was so bogged down on blame early on (I "caused" the SPD for riding a riding mower while pregnant; my son was never going to be "normal" because of his SPD; etc.). But, as always, you've captured the heart of it - it's about acceptance, not fault.
ReplyDelete-mf
Thank you, dear one!
DeleteI could enumerate the many ways I eventually suspected my "faults," but as you - and hey, also, I - said, it IS about acceptance...and even celebration!
Love,
FSM
So much YES!! I wish I knew so much more when my kid was born and in the earlier years, but we do the best we can and build on knowledge. And the acceptance part is so important! We live in a world where neurodiversity is only now becoming understood and valued, there's much work to be done.
ReplyDeleteAbsolutely!!!!
DeleteThanks o much for reading!
Love,
FSM
Hope all the early mum selves get a hug in a way that feels helpful.
ReplyDeleteJean Mercer [infant developmentalist] published her own list of early signs. Especially the "don't worry everyone is doing their best" bit. She has a lot of very scared parents on her rolls.
Taking Turns is Hard to Do
All about Yellow Flags ~@18 months. This is the big one. Share it with your compeers - "most of these behaviours most of the time and some not done"
"Once again, the issue is whether the child does most of these things a lot of the time. If he or she does, the possibility of a later diagnosis of autism is remote. If the child does not do most of the things mentioned, there may still be reasons other than autism for the problem, but it would be a good idea to see a specialist who can make sense of what is going on. Whatever the trouble may be, it may be time to seek treatment and help to move the child along developmentally as much as possible.
That was EIGHTEEN months, remember! And those flags are yellow." [Mercer 2016 about the CHAT - Checklist for autism for toddlers].
Wouldn't it be great if there were a sensory webinar?
Sounds helpful!
DeleteThanks and love,
FSM
Jessica has left a new comment on your post "INFANT MASSAGE CLASS: “EARLY SIGNS”":
ReplyDeleteThank you for being that safe space for us! Another excellent post. Your infant massage mommy memory triggered a memory of my own- infant swimming "mommy and me" classes. There was NO WAY my kiddo wanted his head submerged under the water (to the tune of "Ring Around the Rosies") but I also remember him arching his back in protest at the back float, and absolutely hating going under the fun "water sprinkler" obstacle course that they had us walk them through. I quickly learned how to make accommodations for my kiddo, long before I knew anything about sensory differences or autism. We see our child is in pain and we do what comes naturally. Thanks again for letting me know I'm not alone! :)
@Jessica -
DeleteThere was a technical glitch with your comment so I posted it from email.
Sounds like you got wise way before I did! But it is so true: we know when our kids are in pain and whether we know the specific reasons and "right" responses or not, we do whatever we can...
We are NOT alone!
Thanks and love,
FSM
@Jessica-
DeleteThere was a technical glitch with your comment, so I posted it via email.
Sounds like you wised up way before I did , but it's so true that we do our best for our kids, especially when they are in pain - and even if we don't understand what the roots of that pain might be.
And we are NOT alone.
Thanks and love,
FSM
Well done xo
ReplyDeleteImage of massage class : strong strokes not fluttery strokes = powerful
Loved this and working for that world you mention!
ReplyDeleteTHANK YOU!!!!
Delete