The time on the clock says 9:30; I look down at my sleeping little
boy, whom I have just quietly rocked to sleep. He is still latched
on somewhat, comfort nursing. As we rock I stare down at him and
wonder what his future might hold. Zachary is my 27-½ month old
son, and has been diagnosed (I hate that word; to me it some how
implies that there's something wrong that medicine could fix) with
Sensory Integration Dysfunction and delayed speech, as well as
having some feeding or eating issues. These diagnoses were made
about 6 months ago with a team of qualified therapists and
specialists.
Life with and for Zachary is not at all like the life I had
envisioned for him. Of course as a new mom, you have all the
hopes, expectations and desires that every new mom has. Also, with
having an older child, my work in a preschool and being a nanny; I
had an idea of what was to come. I thought I knew to expect
talking, walking, fine motor skills, eating on queue as well as
other things. It all seemed so laid out in some sort of master
plan, at least it did for all of the kids I had ever seen before.
Around the time my son turned one I began to really take notice
of little differences in him, differences that most first time
moms might not have noticed until much later. One thing I noticed
was his lack of wanting to eat baby foods (he was still nursing
for most of his food, and even today nurses for a good portion of
the food he takes in). His inability to fall asleep easily (it can
take him between 30 minutes to 2 hours to fall asleep) and his
lack of making little baby noises (Zachary was never a "babbler"
and at 27 months has JUST started to babble) struck me. Even his
ability to walk was off (he was always bumping into things). He
was a SUPER active (almost over-active) little boy who craved
motion, especially in climbing, still does.
At this point, I decided to turn to several close trusted
friends, whom all suggested the book, "The Out of Sync Child".
While reading this book, on almost on every page, on almost every
area I was shaking my head in agreement with just about everything
that was being said! "YES" I thought, finally something that
described "my child," something that could give me ideas that
enabled me to help him, and where I could go to get help for him!
I had finally found something that "made sense". Every aspect of
Zachary's life seemed to some how make sense; even things I did
not think were connected, I learned were! Every area touched on
within the book seemed to directly (at least in some part)
correlate with what Zachary was doing and/or seemed to be feeling.
How he was acting or reacting to the world and life around him
finally started to make sense to me!
So, about half way though the book, I called my state program
Early Intervention. We set up a meeting for 5 months later; it
seems nothing in the "system" works fast. On the date of his
evaluation, he was formally given the diagnoses of Sensory
Integration Dysfunction, with a speech delay.
For us Zachary's sensory and speech issues follow us all day
long, every day.
So could you walk a mile in his shoes?
Maybe you could.. That is, if you ever got your socks
on "just right." You may need to have them taken on and off five
or six times to get the seams so they lay "just so" and the
tightness around the leg to be "ok." Then you would need to scream
though putting on a fleece or cotton union suit, because you can
not communicate to anyone, what's wrong with this particular
outfit. Then, while it's being put on; you pull, yank, cry and
even scream (sometimes hitting, if it is extra painful) until the
suit gets on perfectly so the seams are "ok" or the tags are not
sticking you in the back.
Maybe you could.. if your mommy would tell you three
or four times before you change activities, making sure you heard
and understood. Repeating herself over and over, because the
lights are in your eyes, your sister is breathing and talking, or
the fan is on; making it nearly impossible for you to concentrate
on what she's saying.
Maybe if you understood that the texture, smell and
taste of most foods, would be too much for you. So much so that
meal times will be nearly impossible for you to cope with. But
knowing that you're one of the "lucky ones", your mom is still
comfortable with nursing you, so you at least have a good form of
nourishment. Since you would nurse anywhere from 4 to 10 times a
day.
Maybe if you heard EVERY little bump, burp, and voice
no matter where they came from within the house. All those noises
crowding into your mind would be making it nearly impossible for
you to concentrate on the most simple of tasks, from playing to
learning. Being unable to communicate to let anyone know that any
of them is even bothering you.
Maybe if you could crave putting everything into your
mouth, because you need that form of stimulation. If you really
had NO way of communicating except for grunting, or crying. You'd
have no way to let the world around you know anything about what
was going on in your head, your thoughts or feelings. No way to
show that you're feeling totally lost.
Maybe if you picked incessantly on yourself, your
"boo-boos," and fingers until they bleed, without even feeling the
pain of what you're doing. Or if strangers looked at you, rolling
their eyes, or pointing there fingers at you, because you're
grunting instead of talking or you're hitting yourself instead of
playing.
Maybe if you could not last at a single task longer
than two or three minutes, all the while hating transitions and
screaming, crying and throwing a fit at every change that had to
be made, no matter how small. If you got sick every time you got
into the car because of the lack of control. If you could climb to
very high places and just jump off, without the fear of being
hurt. If going into a crowed place literally freaked you out, for
no other reason other than all the people. If the idea of pouring
water, or anything onto your head or into your face sent you
spiraling into a tailspin of screaming and clawing for a breath,
because you believed that you were being suffocated.
Maybe, if you could live every day, feeling, just like
this, you could. But I don't, for one second, think so.
To look at Zachary, you would think "no problem" he's a normal
little boy. However, that's not the case, what I've described is
just a small piece of what my little boy goes though EVERY minute
of EVERY day. I don't think you could do it, nor do I think you
would want to.
The therapists he works with now are helping a HUGE amount.
Zachary is now using some sign language to talk to us, is
babbling, and is much more willing to try foods and other things
that make him "ick-a-fied". It is, however, a very good thing that
I got him into the program at his young age. Research shows that
working with a young mind is much easier than working with an
older one. Young children are felt to have a "plastic" brain,
meaning that it can still be rebuilt or changed. The older a child
gets the harder it is to change the behaviors and structure.
One of the huge battles kids like Zachary face is that they
appear so "normal", there are no "tell tail signs" that there is
something "amiss" deep within their little brains. So people look
at them and think, "normal, no issues" then start to think there's
something emotionally wrong with them.
In general terms, Sensory Integration Dysfunction is basically
the inability for the brain to process the information that is
brought in though your senses (whether those senses are internal
or external). The dysfunction happens in the central nervous
system deep within the brain. So basically it's when a "glitch"
occurs, and the brain can not analyze, organize, connect or
integrate the sensory messages it is being sent. Internal or near
senses would be; vesicular sense (the inner ear) which processes
information on movement, gravity and balance, the tactile sense
(skin) which processes touch, as well as the proprioceptive sense
(muscles and joints) which process information about the body
positions and body parts. The external or far senses would be
smell, touch, sight and sound.
The end result being that the child (or adult) suffering from
Sensory Dysfunction can not correctly respond to sensory
information, in turn making meaningful consistent behavior nearly
impossible for them. Where a "normal" child just has it, the child
with a sensory dysfunction has to work, and work HARD at achieving
it. The child can have an over sensitivity, under sensitivity or
both (which is most often the case.)
Children like my son, who have sensory problems, are literally
fighting an internal fight with themselves every day, only
processing half of what the world around them has to offer.
Maybe, you think you have the abilities to walk around in my
son's shoes..
However, I don't think you could walk in those shoes..
Not because the shoes are too small but because..
You're not special enough.
About The Author
Jennifer Sprague, co-owner of "Attachment Parenting
Products with High Top Baby Designs"
High Top Baby Designs. She has several years of
teaching experience, working with infants through adults
and has a passion for helping children live happy, healthy
and secure lives. Jennifer has been a nanny, daycare
provider, teacher, and is currently studying to become a
Doula and a Lactation Consultant. She enjoys spending time
with her two wonderful children, Aubrey and Zachary.
"Contact Jenn of High Top Baby Designs"
Jennifer is also an advocate for peaceful parenting
everywhere she goes. © 2005 High Top Baby Designs. All
rights reserved.
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