At the age of 3, my daughter was diagnosed with sensory processing disorder. It was both frightening and a relief. A relief because now my wife and I had an explanation why my daughter did certain things and could not do other things. It was frightening because I had never heard of sensory processing disorder.
I studied special education in college and spent six months working with children and adults who have special needs, including individuals with developmental disabilities and Autism Spectrum Disorder. Sensory processing disorder was never discussed.
Once I learned that my daughter has sensory processing disorder (SPD) I read and learned as much as I could. Thankfully, I started with the book, The Out-of-Sync Child by Carol Kranowitz, the definitive book on SPD, and realized, yes she is different, she will have some unique challenges that most other kids will not, but that there are steps I can take to give my daughter the best life possible.
What is Sensory Processing Disorder?
For those who have never heard of sensory processing disorder, STAR Institute says it “exists when sensory signals are either not detected or don’t get organized into appropriate responses.”
Children with SPD have varying levels of sensory issues and often have it in conjunction with other diagnoses, like Autism Spectrum Disorder. Sensory Processing Disorder looks different with each child. Some children are very picky eaters because of the texture or they will not wear certain clothes or fabrics because of the way it feels on their skin.
It isn’t just about being picky, SPD affects the way children learn and their physical capabilities. For instance, at the age of 2, my daughter could not run or throw a ball overhand. At the age of 5, she began to learn to ride a tricycle; a skill most 3 years can do.
At first, my wife and I just thought my daughter was quirky because she always did things in the same order. My daughter always put on her shoes starting with the right then the left. If you tried to put on the left shoe first, she would have a meltdown. Later, we learned that she wasn’t being difficult but with SPD her brain could not tell her left foot to move first. She knew how to move her right foot first so that’s what she always did.
This diagnosis has changed the way I parent and it has changed my expectations – not lowered, just adapted. Explaining sensory processing disorder is a conversation I have at least once a week with family, friends, or teachers. I am constantly educating them so that they can be a positive influence on my daughter’s life.
Explaining SPD to Family
With family, I can go a little more in-depth about SPD. They know my daughter and can see the struggles. The explanation comes more as teaching them why she is acting the way she is, so they do not become frustrated with her.
I take the time to explain that SPD affects her physically, which is why she cannot do many of the things other kids her age can do, like jump. The disorder affects her senses, which is why she does not like to wear jeans. They do not feel comfortable against her skin.
Sometimes I ask, how would you feel if I made you wear an itchy sweater all day long? What type of mood would you be in wearing an itchy sweater? My daughter feels the same way when she wears certain clothes.
The good news is that many of her physical limitations can be improved. I tell the family that by attending physical and occupational therapy she will learn and get better. With help, she will learn, it is just going to take longer, so be patient.
Explaining SPD to Friends
Parents notice that our child acts differently. They may not say anything, but you can see it on their face; they are curious. If they are true friends they will ask because they care.
Many friends ask why her bedtime is so early. My daughter gets two hours of sleep more than her peers. The simple answer is that she needs the extra hours of sleep to function at her best throughout the day. By 4 pm she is already getting tired (though she does not go to bed that early).
It takes her more mental concentration and physical work to do tasks that her peers can quickly and easily accomplish. All the focused concentration is taxing and builds during the day. Every time a new or slightly varied situation occurs, more mental preparation is needed.
I will remind friends how they feel preparing for a big presentation or a job interview. We don’t realize the stress and anxiety building until the moment it is over. Then we go home, relax and go to bed early. Each day my daughter has to prepare for life, not knowing what to expect, and her stress and anxiety grow. At the end of the day, she is exhausted and goes to bed early.
Explaining SPD to Teachers
Yes, we tell her teachers about SPD. Not so she gets a ‘pass,’ but so the teachers will understand why she cannot do certain tasks so that we can work together to help her improve and so they may show some patience.
Academically, she will shine, but physically she will struggle and when it comes to social skills she is a little awkward.
I tell the teachers that she is working on many of these physical skills with a therapist and that from them we also need them to work on these skills, but also show a little compassion. She is working on getting better. Don’t compare her to the other kids in the class or where she should be developmentally. Please acknowledge her progress.
My daughter will swing her legs while sitting and kick the people around her. I have to explain to the teachers, she is not doing this on purpose to annoy or distract her classmates, she has no awareness that her legs are flailing. Instead, draw her attention to it and ask her to stop.
It is also difficult for her to filter out sounds. This causes her to get distracted. Imagine going to a concert, with the lights flashing, the sounds of loud music and people talking, and unexpected pyrotechnics. Now imagine, instead of enjoying the concert, you had to write a proposal. How much work would you accomplish? This is my daughter’s classroom experience. She needs little distractions and gentle reminders to focus.
A parent’s role is difficult when you add a child with adaptive needs it brings a whole new challenge. By explaining sensory processing disorder to others, I hope they gain some understanding into my daughter’s thoughts and actions. I don’t tell people for sympathy, I tell them hoping they will show a little patience and maybe even some compassion.