I am the mother of a child with SPD (Sensory Processing Disorder)
Sensory processing is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. For instance, when you put on a warm shirt your brain takes that feeling processes it and in turn your feel warm and snugly. SPD is a condition that exists when sensory signals don't get organized into appropriate responses. Almost like there is a traffic jam and the brain doesn’t get certain information it needs to processes it correctly. 1 in 20 children our affected by SPD. There is nothing that caused Josie to have SPD, it was in her genetic makeup. While it took us 6 years before having her diagnosed, I can look back and see symptoms from when she was little. We had to cut her feet out of her footie pajamas, she hated being swaddled, she cried a lot, she wouldn’t give up her pacifier until she was 4, she had to hold hair to fall asleep. She even wanted her face pressed into you when she slept. I remember during her ultrasounds they could never see her face because it was pressed in the placenta, craving deep pressure in the womb. Until recently I had never heard of SPD, I just thought I had a very particular little girl. I never thought difficult because Josie is amazingly bright and curious. She is funny and loving with a unique sense of style. This year her unique sense of style became more of a problem and she started to be late to school because she couldn't find anything to wear. At first I thought it was some sort of fashion diva complex and she had to look just right. She wouldn't wear underwear anymore, but in my mind I thought she might be having some urinary track infection issues. We had to fight before each soccer game to wear those big socks, but come on those socks are ridiculously large how could I blame her. I had come up for a reason for all my daughters quirkiness. Until we had some psycho-educational testing done because she was having academic struggles. The psychologist suggested we look into a neurologically delays and some occupational therapy. I had no idea why I was asking her pediatrician for a referral for this except that he told me to, I was clueless. After being assessed Josie was diagnosed with SPD, lack of coordination and a severe fine motor delay. How could this be? My daughter has been active in gymnastic, soccer and basketball for years, she couldn't have a delay or lack of coordination, this must be wrong I thought. Hhhmmmm.
Dance was a huge challenge for her and she often repeated "I can't do it." Although she hated wearing uniforms, socks and cleats. Even gymnastics uniforms were a challenge for her to wear. However, once they explained SPD, I exhaled and said "Ohhhhhhh." It was a dead ringer for my daughters struggles, I never new there was a name for it.
Josie today at 7 years old is still oral-tactile and likes to chew on things she shouldn’t, like her clothing, wires or toys. She still likes to hold hair when she falls asleep and she won’t wear underwear or socks and hates shoes. She can’t wear jackets unless she is wearing short sleeves and she can’t sleep on bed sheets instead she is folded up in a comforter. She has a meltdown if someone tries to talk when she talks and occasionally noises bother her. She craves deep pressure, which means she will lean into you when sitting next you or lean into her desk at school. However, if you try to hug her too tight she will freak out and scream she can’t breathe. She gets emotional very quickly and it doesn’t even have to make sense why she is getting upset to you and me. Josie is a sensory seeker, yet can't stand the way certain things feel. She struggles socially, partly because she is aggressive and needs to have things a certain way, partly because she doesn't pick up on social cues from her peers and in turn acts inappropriately at times. We recently found some SOFT clothing that keeps children with SPD in mind when designing and that has helped a great deal.
We have recently tried some in-home therapies that Josie seems to enjoy and it calms her. We sneak over to our neighbors trampoline and jump around together. We created a "squeeze box" that she climbs in and get smooshed with her stuffed animals. She gets nightly massages that end with a smoosh helping her satisfy her need for deep pressure. What I realize is Josie has needs different from mine, her body has a sensory appetite that needs to be satisfied. If she doesn't have those needs fulfilled, she will act out, lack focus, get frustrated or have a full on meltdown of epic proportions- To most people it would appear that we don't discipline her and she just needs a good spanking. This is not the case, no amount of punishment can get rid of SPD.
Josie in her squeeze box
Josie with crazy hair after jumping on a trampoline
What I want everyone to know is everyday is a struggle for Josie. Everyday is struggle for us as a family trying to help Josie. She will have SPD her whole life, there is no cure. The best we can hope for is finding ways for her to cope with her disability.
Next time you see a kid misbehaving in public, don't give the parent a dirty look. You don't know what they are dealing with and personal I am sick of the dirty looks that come my way.
Next time you see a child dressed ridiculously with flip flops in winter, do not assume the parents don't care. It may be the only thing that child could wear without feeling pain.
Children with SPD look the same as other children, you can't see their disability from the outside.
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