I've Been There - Part I
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
- sleeping in our bed or me being in her room with her, or at least visible to her
(Note: crying herself to sleep never worked, escalating for 1-2 hours, gagging and screaming the whole time)
Additionally...
- 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
- Excessively ticklish
- 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, stop it!!!!!"
- 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 surgery
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 it!!"
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 tailored guidance
...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 and self-esteem.
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 finally HOPE!
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 accommodations.
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!
Continue reading in I've Been There, Part II >