Sample Letter to Family and Friends Explaining SPD
The only thing more difficult than understanding sensory processing disorder and how it affects your child is trying to explain it to other people. After many frustrating conversations (on both ends!), I decided to explain it to my loved ones in a letter...
Dear Friends and Family,
As many of you know, H is affected by something called Sensory Processing Disorder (SPD). I know most of you aren’t familiar with what this is, as even I hadn’t heard of it before H’s diagnosis. So, I wanted to write a letter to: explain what SPD is, describe how it affects H, and, in response to many of your inquiries, let you know how you can help.
Let me start from the beginning. Early on in his infancy, I sensed something was “off” with H- inconsolable crying, feeding issues, difficulty falling and staying asleep, difficulty self-regulating, and gross-motor delays were my first clues. Our pediatrician dismissed my concerns, deeming H “colicky,” assuring me he would “outgrow” these challenges.
Though I couldn’t put my finger on what was wrong, this explanation didn’t sit well with me. I knew there was something more to it. I kept voicing my concerns until finally, at his five-month check up, our pediatrician referred us to a pediatric physical therapist.
Within the first hour of the evaluation, the PT informed me that H had “sensory processing issues,” and so began our journey into the world of SPD.
So, what is SPD? Well, it’s complicated! Here’s the simplest definition: SPD is a complex neurological disorder that affects the way sensations are experienced and processed. SPD exists when sensory signals don’t get organized into appropriate responses and, as a result, a child’s daily routine and activities are disrupted (Miller 2006).
I warned you- it’s complicated! So, what does this actually mean? And how does it affect H’s life?
We all know the five senses: sight, hearing, taste, smell, and touch. There are also three additional senses, the “hidden” senses, that most of us aren’t familiar with: proprioception, vestibular, and interoception.
Most of us have never given a second thought to how we process information from our senses because it happens automatically and seamlessly, hence the general confusion about what sensory processing disorder is and how it affects children.
What if when you tried to grip a pencil you couldn't feel how much pressure you needed in order to hold it, or when you were hanging upside down, you had no idea where your body was in space, or you couldn't tell when you had to go to the bathroom? The way our brains organize sensory information impacts how we move, how we feel, and how we experience the world.
Children with Sensory Processing Disorder are sensitive to and often misinterpret the information they receive from their eight senses which then affects many areas of their emotional and physical functioning including: their ability to self-regulate (stay calm, focused, and alert), their ability to cope with stress, their gross and fine motor skills (ability to do things like kick a ball or zip a zipper) and coordination.
It’s important to understand that we all have unique sensory profiles. We all have our own sensory-sensitivities. You may be sensitive to noise and steer clear of concerts and big events. You might have certain preferences about textures. You might be sensitive to foods that are spicy or you might carry around your own tabasco sauce because you like your food extra spicy.
Sensory processing impacts everyone, it just affects those with SPD more.
Here's how it affects H…. H is overresponsive to vestibular input. Our vestibular sense governs our balance and movement. It answers two basic questions: Which way is up? and Where am I going? A child like H, who has poor vestibular processing, will have difficulty balancing, coordinating movements of his head with his eyes, using both sides of his body at the same time, feeling the direction and speed of movement, and remaining upright against the pull of gravity.
When H was an infant, he screamed inconsolably every time he was placed on his back or held in a non-upright position. Due to his poor vestibular processing, his brain interpreted being in these positions as dangerous which triggered an immediate fight or flight response, hence the prolonged screaming. He also had delays with motor skills requiring bilateral coordination like clapping, crawling, and rolling. He was fearful of heights and very cautious in his movements. At playgrounds, while most toddlers were running around, exploring with enthusiasm, H would cling to me and approached playground equipment with trepidation.
Children with poor vestibular processing are at higher risk for emotional and behavioral problems because their nervous systems (brains) tend to be on high alert. Because the brain isn’t able to effectively process information about where their bodies are in space, kids like H tend to feel unsafe and insecure. And what do we do when we feel unsafe and insecure? We act out! So, when you see H having a massive meltdown, it’s not because he’s a brat or he needs more discipline or he’s being a “difficult” child, it’s most likely because his nervous system is under too much stress for him to handle.
In addition to poor vestibular processing, H has poor proprioception (vestibular processing and proprioception go hand-in-hand). Proprioception is the information we take in through our joints, muscles, and bones that gives us body awareness and provides information about how we're moving. H is underresponsive to proprioceptive input meaning he has to focus harder on even the smallest tasks, like gripping a pencil or buttoning buttons or walking around a table without bumping into it. H’s body seeks proprioceptive input so you may see him doing things like walking up on his toes and mouthing and chewing on objects. You may also notice that he seems “clumsy” and has trouble following directions for physical movement.
Kids with poor vestibular and proprioceptive processing also tend to have “tactile defensiveness,” a heightened sensitivity to certain textures. Activities most toddlers enjoy like finger painting, using shaving cream in the bathtub, and digging around in a rice-filled sensory bin send H into a full-blown meltdown. Again, not because he’s being a “brat,” or is deliberately “acting out,” but because his brain processes these textures as “dangerous” which sounds his internal alarm system and sends him into a fight or flight (read: level 12 meltdown).
Speaking of level 12 meltdowns, you may have noticed that H's are pretty intense. This is common for kids with SPD. While it’s typical for toddlers to have tantrums, a toddler with SPD will have have tantrums and meltdowns that are more frequent, more intense, and longer in duration. Again, this is not because they need more discipline or because they are “bad” kids. It’s because their nervous systems are more sensitive, causing them to go into a state of fight or flight more frequently. Once they are in that dysregulated state, it’s harder for them to recover, hence the prolonged tantruming.
Here is a list of things that are particularly challenging for H and tend to trigger tantrums/meltdowns:
- Environments that are loud, chaotic, unpredictable (e.g. crowded places, busy playgrounds, loud restaurants, birthday parties)
- Bright lights (e.g. going outside without sunglasses, fluorescent lighting)
- Transitions from preferred to non-preferred activities (e.g. leaving the park to come home, having to stop playing to eat dinner)
- Lack of sleep or poor sleep (if he skips a nap, or goes down to bed late, watch out!)
- Sugar, gluten, and dairy
- Too many activities back to back (being overscheduled)
- New environments/people (it takes him awhile to warm-up)
- Things that are “unexpected” or “unpredictable” (e.g. sudden change of plans, his baby brother who recently started crawling and getting into H’s toys, a change in his normal routine)
The behavioral issues associated with SPD are the most difficult aspect of the disorder and make parenting extra challenging. Here’s what I need you to know- we are doing the best we can. We still have a lot to learn about SPD, about how it affects H and about how we can best support him. We don’t always know exactly how to handle his challenging behaviors and we definitely make a lot of mistakes- we’re learning as we go.
The most helpful things you can do are listen without judgment, ask questions instead of offering advice and be patient with us and with H. We may not always be able to attend family events or large get-togethers with friends and if we do, we may have to leave early. If we seem preoccupied or inflexible, understand that parenting a child with sensory processing disorder creates an extra layer of challenges that can be difficult to manage. Rather than making assumptions or judgments, we want you to feel comfortable asking us about it so we can explain exactly what we’re going through.
H is an amazing kid and he is teaching us so much about ourselves, about having patience, about suspending our judgments, and about the importance of empathy, attunement, and acceptance. Thank you so much for taking the time to read this and please feel free to ask us any questions at any time. We are incredibly grateful for your support.
Cameron and A