Community Voices for Health

By: Martianne Stanger

October is Sensory Processing Disorder Awareness Month – a topic that has been near and dear to my heart ever since we discovered what SPD was as we unwrapped the gift that is our eldest boy.

The Journey Thus Far

Today, as I look back at our journey to date, I feel as though I am on top of a small peak.  I am looking up to the main summit, which we have yet to scale, but I am also turning to look back at a path which sometimes meandered, at other times demanded more energy and focus than what I thought we had, but, mostly, just kept us moving along together grateful for the steps we had been able to take and determined to stick together no matter what lay ahead.

Through those steps, we’ve come a long way in understanding what SPD is, how it affects our son and what we can do to minimize its challenges.  Thankfully, we have also found places to share, learn and find encouragement.

For my part, there has been a lot of reading, researching, phone calls, processing, driving around to appointments… as well as equal portions of confusion, tears, and, thankfully, laughter and gratitude, too.

For my husband’s part, there has been a gradual willingness not to judge his son against society’s standard for “normal” and a profound appreciation of just how beautifully different his little boy is.

For our two younger children’s parts, there has been little sense of abnormality, because they have never known life any differently.  Our daughter, more often than not, understands and accommodates our eldest son.  Our youngest son simply goes with things.  All three children are aware of differences, but, luckily, do not often equate “different” with “wrong” or “bad.”  There seems to be an innate sense of compassion beneath the chaos of the many sibling squabbles, antics and explorations that go on here.

For our eldest son’s part, there has been an amazing amount of strategy use and growth.  Occupational Therapy.  Behavior Therapy.  Feeding/Nutrition Therapy.  Home Sensory Diet.  Each of these has played a part in helping our son become more self-aware.  Despite the fact that he is not yet even seven years old, we can see him maturing.  Our son is beginning to understand who he is, how he ticks and what he can do to shine with his gifts instead of to burst with his challenges.  Sure, there are still melt downs, outbursts and occasional downright scary moments, but these have become fewer and further between.

What Is Working for Us
I credit some of our son’s progress to the official therapies he has participated in, but believe a larger portion of it stems from a commitment to our family food goals.  Indeed, among all the therapies and interventions that we have experimented with – our food choices seem to be what has had the greatest effect.  It was not easy to commit to being gluten-, casein, additive-, preservative-, artificial flavor-, artificial dye- and white sugar-free, but it has been well worth it.  Since freeing our diets of these specific triggers, we have noticed that our son seems “freer” from SPD symptoms.*

When we first began our journey, we were often met with judgment and misunderstanding.  Questioning eyebrows and unwelcome comments were a normal reality.  These days we don’t feel the need to explain ourselves or our son so much.  In fact, people who have known us for years now ask us what has happened with our son.  In a good way.   This is so refreshing!  What a joy it is every time my husband and I receive confirmation that we are alone in noting the progress our son has made with sensory integration and self-regulation.  How rewarding it is to note growth as a result of a team effort between our son, family, friends, therapists and us.  I truly cannot express the relief and satisfaction that I feel every time I stop to take notice of changes.

Noting Success
Recently, I uncovered a poem that I wrote when we were not very far along in our SPD journey.  Honestly, I cannot believe that it is about the same child that I experience daily now.  For awhile my son has always been my son – a unique child who is a precious gift to our family, and, indeed, to our world – he is no longer a child that riddles us with so many questions, doubts and fears, nor is he one that earns nicknames for his physical activity and odd sense of boundaries.  If anything, our son is a child who testifies for hope, grace and, of course, effort.  Sure, there are still some challenging moments, but there is also progress – so much progress.

I share that poem I wrote below, so that those at the beginning of their own SPD journeys might know that they are not alone, and so that those further along in it might feel encouraged to continue to move forward with hope.

My boy is just one boy with one unique mix of neurological factors.  Another’s child may have fewer or far more challenges.  Yet, each child is incredible!

Just Luke

“Bam Bam”
They laughed at a family party
about the moniker one of them gave you.

“Crash”
They named you at another event
as you ran headlong into everyone there.

“Busy”
They called you at meeting that I went to
where you were welcome, but quite distracting

“Unique”
They termed your special mix
of quirks and habits and behaviors

And me?

I called you mine.

My boy
Who I have loved and adored
From conception
Through birth
Through all the odd moments during which I have questioned:

Why do you offer a head butt
instead of a kiss
when saying goodbye?

What is it about shopping cart wheels
on pavement
that strike
hand-gripping,
body shaking terror
into you?

Why do you ask
if Daddy is flipping the car
when he is simply driving along an on-ramp’s slight incline?

Are you willfully disobeying elders,
and purposefully avoiding eye contact,
or is there some misconnect there?

How is it
that you manage
to do layer upon layer
of jigsaw puzzles
so quickly
atop one another on the floor
when most children your age
can barely fit a round peg in a round hole?

Are you but a square peg?

Or is there something more?

Oh, my dear, dear boy
What is the mystery that makes you you?

How can I help you get along?
Do I even need to?

A stage?
A problem?
A quirk?
An issue?

What does it all amount to, my boy?

“Just Luke”

Yes,
Just Luke
you’ll always be.
No matter what “they” say

To me,
You are my first born.
My love.
My gift.
Just Luke.
Incredible.

* Note:  The diet I mention above does not help all children with SPD, but it sure has made a difference for our son!  If you suspect your child as SPD or related disorders, I encourage you to learn more about what SPD is and to reach out to the many local specialists and parents who can help you discover what will best help your child.  I am happy to offer some guidance based on our experience.  Just ask in a comment below or by contacting me through my personal family blog, Training Happy Hearts.