Hartley Steiner’s last chapter is It Will Get Better and in her closing she ends with: “And don’t forget to take care of yourself!” For sensory challenged kids’ lives to get better, for their family life to get better, and for parents to have the TIME to take care of themselves, parents must KNOW about Sensory Processing Disorder (SPD). They must find a healthcare professional who can help them. Sensational Journeys: 48 Personal Stories of Sensory Processing Disorder by Hartley Steiner with a foreword by Lucy Jane Miller, Ph.D., OTR is the perfect book to read to do just that.
While walking to my computer with this book in hand, it dawned on me that by the power of print I was holding a quick snapshot of the lives, the dearest thoughts, and the heartfelt advice of these 48 kind families who shared their story with the world. Each family did this so others would not have the same struggle to get their sensory challenged child back on track. Reading these stories describing the unusual behaviors of their children should raise a red flag for all families who care for children with unexplainable behaviors.
In the Foreword by Lucy Jane Miller, PhD. OTR, we immediately learn an encouraging fact:”If your child has SPD, he or she CAN GET BETTER! Not cured, but better. Given the appropriate treatment, most children improve, improve, and improve. Most will do well with some support mechanisms in place in regular (mainstream) classrooms, and, when they grow up, they will become functioning members of society…”
Parents and caregivers of children with sensory issues will surely appreciate Sensational Journeys: 48 Personal Stories of Sensory Processing Disorder. However the biggest impact this book can have is to educate parents, therapists, teachers, daycare providers, and early intervention staff about the symptoms of children who are sensory challenged so the immediate help these children need is given.
Like I was, you too will be angered as you read each story to find the same ending… fought with the system for much too long, finally got a diagnosis of sensory processing disorder and then things started to fall in place. Why are so many children with sensory challenges falling in the cracks when the results of the SPD Scientific Work Group study found that as many as one in six children have sensory issues that affect their lives?
Unfortunately, at the present time, sensory processing disorder is not included in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM). Therefore parents have difficulty receiving support and special treatment services. Also SPD is a diverse disorder sometimes shown as having three major patterns and six subtypes. So individuals with SPD can be so different that a diagnosis is difficult to arrive at. But with Dr. Miller’s hopeful message these children must be “found” and they must receive treatment.
How Families Felt.
Signs Were Everywhere.
Should Have Acted Sooner!
- I observed more traits about my son that just didn’t seem typical. …it was impossible not to notice the growing list of oddities. I couldn’t shake the nagging feeling that something was wrong.
- It was becoming clearer and clearer that my child was not like other children.
- I did beside myself with frustration and confusion …not understand what the problem was; I chalked this up to another parenting failure on my part.
- I’d always known something was “off”. Since birth, I had been compiling a list of “quirks”—behaviors and preferences that didn’t seem typical.
- Even though everyone told me she was a perfectly healthy 9-month-old girl, my “mommy instinct” was ringing loudly.
What Are Some of the Signs of Sensory Processing Disorder?
You must keep in mind that there are children with sensory processing disorders who are sensory overresponders, sensory underresponders and some who are sensory cravers; therefore, their behaviors vary accordingly. Moreover some children may have other disorders like autism or Asperger’s syndorme combined with SPD. Sometimes in the same family siblings have the exact opposite behaviors. The following are but a few non-typical behaviors documented in the book.
- Being a difficult baby
- Taking forever to fall asleep, wouldn’t nap, erratic sleep pattern,
- Having gastrointestinal issues
- Being super sensitive to temperature, touch, noises, smells, textures, …
- Drooling past the teething stage
- Having increasingly awful meltdowns
- Feeling no pain, never cried
- Not meeting developmental milestones
- Hitting, running into other kids
- Shrieking with hunger but not eating
- Stuffing his mouth with food he would not even chew
- Crying and fighting through baths, shampoos, haircuts, nail cutting, hair brushing, dressing, …
- Refusing to get hands or clothes dirty
- Having difficulties with fine-motor skills, gross-motor skills, and balance
Emma Benefiel sums up living with SPD this way: “Living with SPD changes your whole world. It affects every aspect of your life. Every day—every event—is planned carefully.”
Michelle Wood wrote:”And the 2 years before his diagnosis were the hardest of my life. It challenged my marriage, my mental health, and my physical well-being.”
So parents ignore the following comments, believe in your mothering/fathering instincts and if you have ANY concerns get an evaluation.
- He’s just a boy.
- He’ll grow out of it.
- It will get better.
- He’s just acting out.
- It’s his terrible twos.
- Let’s wait and see.
- Give it more time.
Parents, do not despair; there is hope and there is help. Start by reading Sensational Journeys: 48 Personal Stories of Sensory Processing Disorder by Hartley Steiner.
Hartley Steiner lives in the Seattle area with her three sons. She is the award winning author of the children’s book on sensory processing disorder, This is Gabriel Making Sense of School. See our review of this book here.
She is the founder of the SPD Blogger Network. Hartley is a contributing writer for the SPD Foundation’s blog, S.I. Focus Magazine and Autism Spectrum Quarterly, among dozens of other online websites and blogs.