Sensory Processing Disorders: Trust Me... I've Been There!
My name is Michele and I am an Occupational Therapist. I want you to know, "I've been there", right where you probably are today.
I have spent several years working with children and adults with a multitude of disabilities; in group homes, sensory integration clinics, day habs, early intervention settings, preschools, school systems and psychiatric hospitals.
My “active career” was unfortunately cut short due to multiple injuries, however, my passion still remains; working with and educating professionals and families about Sensory Processing Disorders (*note, used to be called Sensory Integration Disorders or Sensory Integration Dysfunction).
“A Personal Story”
Allow me to introduce you to my daughter
In the beginning…
From the moment she was born, she wouldn’t stop crying (it took her
three hours to fall asleep after her birth)
In the months following, she hardly slept…well, unless I held her
through the entire nap until even my arms fell asleep
She was allergic to every formula except the one that cost $16 a can
The pacifier became her best friend until 3 years old and she never
found any replacement afterwards to help her soothe herself
There were nights she spent the entire night in a vibrating baby
seat so she would stay asleep
I would literally spend hours gently shaking her in my arms until
she fell asleep
She startled with every noise she heard
She cried when other people held her
She gave up (or I gave up?) naps at 1 year old
As she grew:
She became a shy observer; always on the outside watching with pure
anxiety as to what might happen (a noise, a touch, a loud voice etc.) next
within her environment
She decided whether she liked people based on the sound of their voice
She feared family activities because of the unpredictable noises and
laughter that was inevitably a part of it (cried every time a sudden burst
of laughter happened)
She hated public bathrooms, covering her ears and crying with the sound
of a flushing toilet
She only ate about 5 different foods (refuses sight, smell and taste of
meat to this day) and bases decisions purely on smell, texture, and
appearance of food before she will even try something new
Macaroni and cheese must be “Kraft-The Cheesiest”, noodles cooked 6
minutes and extra milk in it… mommy is the only one of course who can make
it right and no substitutions of the cheaper brands or other kinds
Tuna Helper must be “creamy broccoli” with no tuna and all the tiny
broccoli bits taken out
Falling asleep required…
all lights on
rubbing her back and head literally sometimes for 1-2 hours
playing an ocean wave tape the entire night or she would wake up as soon
as it stopped
room darkening shades or the sun would wake her up in the morning
(Note: crying herself to sleep never worked, escalating for 1-2 hours,
gagging and screaming the whole time)
sleeping in our bed or me being in her room with her, or at least
visible to her
She would only wear “soft clothes”, no jeans or “itchy shirts”… stretch
pants and cotton shirts were the staples
Took 5-6 years before she started not fearing and becoming adventurous
on playground equipment
Fears being tipped upside down/sideways, any unexpected movement
Daily anxiety about the unknown/unpredictable
Will become nauseous/disgusted by certain smells… our dinners sometimes
needed to be accompanied by air freshener sprays
Dislikes firm hugs/will avoid people who want to hug her or turn
backwards for them to hug her
Wouldn’t tolerate the feeling of water spraying on her in the shower
until about 8 years old… and still prefers baths
Continues to cover her ears with loud sounds
Has just now begun to soothe herself and not depend on mommy to do it
Even gentle brushing of her hair, crying—“Ow, Ow… you’re hurting me,
Doesn’t go to the hairdresser because of the feeling of the hair falling
on her body and the pain of someone else brushing her hair
For the first 7 years of her life had to sing happy birthday and clap
for her extremely quietly
Couldn’t stand the beach due to the feeling of the sand blowing on or
sticking to her legs or feet
Watched fireworks for the first time at 8 years old with cotton balls in
her ears, sitting on parents lap with earlobes pushed into her ears to block
out the sounds… all other years she would be crying, covering her ears and
hiding in the house until the event was over
Dental work requires hospital sedation due to oral and tactile
hypersensitivities and anxiety (this is after years and years of trying
every technique in the book… although she can finally tolerate cleanings)
Required a 4 person restraint, 3 hours of trial and error in and out of
the operating room, and almost choked to death to get put to sleep for
Need I go on???
Does any of this sound familiar?
If it does, trust me, I’ve been there.
“Our Quest To Help Our Daughter”
Being my only child, I initially thought this was “normal”. As I became worn
out by all of her emotional needs and saw her “behaviors” being “different” than
other children her age, I started my quest to find out why!
Every time we attempted to discuss our concerns with her
pediatrician we would only hear “that is completely normal for her age, she’ll
grow out of it, it’s only a phase…”
No one seemed to understand our daughter or our struggles as
parents. It always seemed to come down to blaming us for being too accommodating
to her…it was OUR fault. They would say, “too bad, she should just get over
There were so many misunderstandings, arguments, and judgments
from family, friends, day cares, preschools, teachers and professionals. Our
frustration was increasing every day and my patience was wearing thin!
I will be the first to admit that some of the accommodations we
made for her went too far. We made mistakes and are still dealing with the
repercussions of those accommodations. But, we were lost…we didn’t know what was
going on or how to help her, or us, be more comfortable.
...If we only knew
...If only there had been some answers and professionally
...If only people understood and accepted her
...If only we had support
...If only we recognized the signs and got treatment earlier
...Perhaps our struggles could have been minimized.
“Help Is Just Around The Corner”
I have learned so much through educating myself, seeking
professional help, doing research, specializing in my career on this subject and
being a consultant for a variety of families and professionals.
Sensory Processing Disorder is a real neurological disorder,
yet still so often misunderstood. It can have a huge
impact on a child’s well-being, daily functioning, social skills, relationships
Having a child with a Sensory Processing Disorder can also
completely exhaust parents and professionals if they are not educated on the
disorder (and sometimes even if they are!).
Open your heart and mind and find comfort in knowing there is
The Update On My Daughter
She is now 9 years old and will not only explain what she can and can not
tolerate to her friends and teachers, but is thriving within her OWN
She knows her limits and strengths and is able to thrive
socially with her peers at school. She is able to tolerate more than ever
before, and is willing to try new experiences more than she ever has. She has
even learned to sleep in her own separate room and own bed in most environments
(finally! after 9 years!).
She still struggles with her sensory processing disorder daily,
but has made significant improvement through education, love, validation,
acceptance, treatment and accommodations. She does remain shy with adults, but
will eventually come out of her shell.
She is a beautiful and incredibly intelligent child who has
overcome a lot and is very proud of who she is, as am I!.
Click Here For More REAL Stories From Other Parents!
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