Yesterday I read an article about a child in Michigan who didn’t want a birthday party as he had no friends to invite. His mom set about to create a Facebook page of birthday greetings as a surprise for him. One commenter went off on the Mom’s efforts, essentially saying the child needed to deal with it and implying that sensory processing disorder was an empty label.
This comment needs a complete response, not just a couple of lines.
Sensory Processing Disorder (SPD) is real. SPD is difficult to define to someone who does not live with it, or live with someone who has it. SPD is not something you outgrow. You learn how to live with it. SPD is different in each individual who has it. People who have autism or ADHD often have SPD as well, but you can have SPD without being autistic or ADHD.
I am not a doctor or an expert in the field. I am a Mom of a child with SPD, a person with sensory issues, the daughter of someone who had sensory issues, and the mother of two other children who have sensory issues to lesser degrees than my SPD child. My child was abused by a teacher who could not cope with the SPD, and that teacher was backed up by a school which did not know how to cope with SPD, nor did they seem to wish to learn. I am now a homeschool teacher of a child with SPD. I attended all of my child’s occupational therapy sessions which helped her with her SPD. I have read books by an SPD researcher and on every page found a moment of “That’s exactly it!”.
So what are sensory issues? Again, it’s hard to define, but I’ll try to illustrate through examples. If you told me I had to switch toothpaste brands, I would literally throw up trying to put the toothbrush in my mouth. My stomach turns just thinking about it. When winter skin hits, my legs bleed from scratching, and I keep scratching because I can’t stop. (Yes, I use lotion twice a day and apply hydrocortizone when needed.) My dad scratched with a comb because he kept his nails clipped to nothing so he wouldn’t bite them. When I was a teenager, I was in tears because I needed to apply sunscreen, but the thought of touching the stuff was unbearable to me. I knew it was an unreasonable fear, yet could not change the thinking. I ended up making a stack of toilet paper, putting the sunscreen on that, then applying it and it was still very difficult.
For my daughter, one day the sound of the washing machine is unbearable – the next day it’s soothing. SPD can give a child low self esteem as they feel they ‘can’t do anything right’. That’s my daughter. One time we were putt putt golfing. She got a hole in one, then the next hole ended in throwing the golf club down, burst into tears, and yelled, “I can’t do anything!”. She hasn’t read the books, research, or heard us repeat that fact about SPD, by the way.
When we were first learning about SPD and had only recently discovered that was what she was dealing with, her reactions often looked like poor behavior. She would run to the end of a hallway, get behind a chair, or go under a table. She might push a child’s desk away from hers (the school kept insisting on pushing her desk right up against another, even after she shared with the teacher that it was a distraction to her). She lacked organization, leading to assignments being lost in her desk. Frustration would lead to frequent tears at school. She would spin to calm herself down – not that she consciously knew why she was spinning – then we’d get a call from the school worried about the spinning, although we had discussed it. She didn’t get dizzy at that time. That body imbalance was addressed in OT. Smells that were barely noticed by others would nearly make her sick.
SPD can mean so many other things. These are just examples. It is difficult to make friends when you have SPD, especially if it has brought low self esteem along for the ride. Many of our daughter’s classmates thought she was crazy. We know this because one of the students told us so. She was an object of gossip and teasing. She had a couple of true blue friends. I have never felt that it was the quantity that counted – just the quality. This young man who didn’t want a birthday party as he had no one to invite was not asking for pity. He was stating the facts. His mom is likely trying to combat that low self esteem. It is a scary monster.
I know of a teenage girl with SPD who has tried to commit suicide twice. My daughter admitted to me a few years ago (she was 9 at the time) that she sometimes went to sleep hoping she would wake up in Heaven, and that she’d felt that way for a couple of years. We have a stable family – this was a direct result of SPD’s low self esteem, and thankfully those feelings have receded with time and a lot of work. Don’t blame this Mom’s efforts to bolster her son’s belief in himself until you put her shoes on.
Sensory Processing Disorder is real. It is not a fun thing to live with – either in your own skin or in a close family member’s.