I’ve heard this asked many, many times. Or, when explaining some of my son’s sensitivities, people will say, “Well my son gets scared in loud washrooms, does he have SPD?” Or, another statement is, “Well all children love to spin in circles, that doesn’t mean they have a disorder.” Few people have a true understanding of what sensory processing disorder is.
In medical terms, SPD is defined as, “A neurological disorder in which the neurological process known as multi-sensory integration fails to properly organize input coming from multiple modalities, such as proprioception, vision, auditory system, tactile, olfactory, gustatory and vestibular system.” A “dummies” version of that definition could read, “Sensory processing disorder is a condition in which the brain has trouble receiving and responding to information that comes in through the senses.”
But even that simpler definition does not really give an indication as to what sensory processing disorder looks like, or how it affects children with it. So, prompted by a great post on a homeschooling board I’m on, I’m going to give you an inside view into Sensory Processing Disorder. You do have to remember that SPD affects everyone differently – children can be over sensitive or under sensitive. They can have difficulties in just one or two areas, or in several areas. Like many spectrum disorders, children with SPD may be affected mildly or severely. My son is middle of the road. He’s not severe, but he is not mild either, he has some significant difficulties in areas.
So, let’s start. One of the comments on the board I’m on was this, “It seems to me like such a general term… everything we do includes using our senses, so for someone like me who doesn’t regularly work with kids who have special needs I wouldn’t know where to begin!” And she nailed it – it being the difference between a neuro-typical person, and a person with SPD. She’s right, we are bombarded with sensory input all the time, and for “normal” (or better put, neuro-typical) people, that input is enough, and our body is able to regulate it. We have to have input from seven specific senses in order to be in controlled regulation: auditory, visual, tactile, taste, smell, vestibular and proprioceptive. We receive this input from our daily environment, and then our brain sorts and organizes and modulates it. For most of us, we never have to think about this because our brain does it perfectly.
But for a child with sensory processing disorder (or a child with other neurological disorders, since they often have sensory issues) it’s not that simple. If a child is over-responsive to input, it typically creates a fight or flight response, as they try to avoid that sensory experience. If a child is under-responsive to input, they will naturally crave it, and this leads to what is called “seeking” behavior. Take my son, for example: He is under-responsive to proprioceptive and vestibular input. Proprioceptive input is input from your joints, muscles etc… It helps you sense pressure, where your body is, and helps in fine/gross motor activities. Vestibular input comes from your inner ear and is your sense of movement and balance.
So in a normal day, our general activities of sitting, writing, walking, going up stairs, really any movement that we do, is enough proprioceptive input and our body can regulate it. However my son’s brain doesn’t register the input normally, it doesn’t realize the input it’s getting. Since this input is necessary in order to feel calm and regulated (proprioceptive input is huge in calming oneself, so this is a hard input to have out of whack), this in turn leads to what is called “proprioceptive-seeking” behaviour, in order obtain that input.
So, for proprioceptive input Thomas will seek out bumping, jumping and crashing activities (he literally throws himself onto the floor), he stomps when he walks, he has to be buried under about 15 lbs of blankets, and I’m not exaggerating that – he has a weighted blanket that weighs 6 lbs, and then he has roughly 10 more lbs of heavy blankets on top of that. He likes having hoods over him, he likes bear hugs, squeezing himself into small spaces, roughhousing to the point that he doesn’t realize he might be hurting himself, others, or that he’s invading personal space. It’s nothing for us to be sitting and have Thomas literally come do a flying tackle on us. Not because he’s being bad, but because he needs that input.
For vestibular input, he can look like an ADHD child: he’s constantly in motion whether it’s shaking a leg when he’s sitting, fidgeting, or jumping, climbing, spinning and running. Instead of walking normally, he’s often jumping, running and hopping. He loves being upside down. Where the line between a normal active child and a child with SPD is drawn, is that a normal child knows when their behavior is appropriate, and can generally control it. Children with SPD can’t, or struggle to, because it’s a neurological need.
Now, the opposite of under-responsive to vestibular input, is my daughter – she is over-responsive to vestibular input. While she can handle spinning, she gets upset with up/down movement. She gets upset if you try and tip her over, she doesn’t like being high up in the air, and those little “whoopee” hills you go over in cars, often leave her screaming and crying. She will physically cover her ears and complain of pain.
Some children’s problems stop here. They have difficulty registering input, they seek it, receive it and then they’re fine. Thomas however, also has modulation problems, so once he gets the input, his brain doesn’t know how to modulate it into control. What this leads to is a child who’s gotten too much input, and then is out of control – basically running wild without any thought for safety of himself or others. An example is one day he got out of of control and ran through the bedroom into the living room to use the couch as a springboard and did a front flip off of it – into the window. Thank God it didn’t break. The window was right there, he knew that. He knows he’s not allowed to do that – however, once he gets into that zone, all reasoning, all thought of safety, is gone. And, once he gets into that zone, he normally can’t get out of it without a complete meltdown. Transitioning when he’s in this zone is a huge struggle.
So, our job as his parents is to give him controlled input – give him activities to give him the input he needs, but recognize his limits (because he can’t recognize them himself). When we see signs that he’s nearing that line, we stop and give him deep pressure (proprioceptive) input, to calm him down. Simply put, vestibular input revs children up, proprioceptive input calms them down. Also, we find ways of helping him in places where he has to sit relatively still – we use a fit cushion in church and let him sit on that – that way he’s getting the movement input he needs, but he’s still sitting. We give him fidgets to play with. He also wears a weighted vest to church, and the weight helps calm him.
Then you have the other end of things – children who are over-responsive. Thomas is over-responsive to auditory, tactile and visual input. So again, you and I can go through our day being bombarded with these inputs and our brain receives and regulates them, perfectly. A great example: we hear a song that’s too loud, and it bothers us, so we automatically know to turn it down. It’s not pleasant, but we know how to remedy the situation without feeling scared or out of control.
However, for children with SPD who are sensitive to auditory input, instead of that loud music being annoying, it can be downright physically painful to them, or it terrifies them. Their reaction is fight or flight. They might scream, have a meltdown, cry, cover their ears and run, shake etc… While logically yes, they should know to turn down the music, or to even say that the music bothers them – they can’t.
Take my daughter with ASD – she has auditory sensitivity. A song came on the stereo the other day and for some reason it was really loud. Instead of saying, “That’s too loud!” like a normal child her age would, she clamped her hands over her ears, and fell to the floor curled up into a ball, shaking and whimpering. Another example of auditory sensitivity: my son never used to be able to go into public washrooms, they terrified him. And they scare lots of “normal” children. However, the difference? If I even tried to get my son to go into a public washroom, he would throw a kicking, screaming meltdown, or he would run away – with no regard to traffic, danger etc… His fear was so bad, that at times, he peed his pants, rather than go in a loud washroom.
Another effect of his auditory sensitivity, is that auditory input can overwhelm him, and he just tunes it out. Thus, trying to tell him something via auditory means doesn’t normally work well. He tunes it out, or it upsets him. So we use visual cues: a visual timer, so he can SEE his limits. A visual schedule so he can see what’s happening next. He also struggles with regulating his volume, our day is constantly filled with reminders of, “Indoor voice, Thomas!” His OT has told us this is often a coping mechanism for children with auditory sensitivity, they use the sound of their own voice, to block out the sounds in the background that are bothering them.
For tactile, our son is very sensitive to the feel and temperature of food. He cannot swallow certain textures – just flat out can’t. We have to finely chop most of his meats or else he can’t eat them, and even then it can be a struggle. He has food anxiety from this – trying to get him to try a new food often results in shaking, crying, fighting, or sometimes running and hiding. He’s sensitive to certain textures – he has real struggles wearing socks, they have to be inside out, and even then sometimes, trying to get a sock on him results in screaming fits. For a long time he couldn’t wear jeans. He cannot handle anything slimy or sticky on his hands. He loses it until he can get them washed off.
An example, the other day in the car he ate an apple. It left his hand sticky. He was upset about it, but was doing “okay”. However, the full extent of his upset became evident when we got home. Normally he unbuckles himself and gets himself out of the car. So I got his sister out of her carseat and went to the house to unlock the door, assuming he was coming. I started in the porch when I could hear him screaming and crying in the car – he couldn’t unbuckle himself, because of the sticky on his hands.
Water is another big one. We have had him in swim therapy for a year now. He had huge issues with the tactile feel of water. We went almost 6 months without him having a bath (we had to sponge bathe him and slowly work up to getting him back in the tub) because of his sensitivities. It’s taken us almost another year, to get him to where we can wash his hair without him melting down – as it is, we only wash his hair once a week, because it’s still an anxiety for him.
His visual sensitivities are the most mild. He can be sensitive to lights. Now, this is getting better, but for a long time lights really hurt his eyes. For example, if sun came in the car when we were driving he would scream and cry. The biggest challenge for Thomas is that he can get overwhelmed visually. A big area this comes into play is cleaning up messes. Heaven knows, he can make a mess! But, the problem is in cleaning it up. Visual clutter overwhelms him, and he has an additional modulation difficulty, that affects how visual input affects his emotional and behavioral responses. He can take a book off the shelf, but truly struggles putting it back, because the sight of the line/rows of books overwhelms him. This can turn into crying, anger, and frustrated cries of, “I can’t do it! I don’t know how!”
Now, there’s a saying out there among the SPD community and it goes like this: “The only thing consistent about SPD, is it’s inconsistencies!” This plays out in two ways. For starters, sensitivities can come and go. They can have up and down days – some days their sensitivites may not be too bad, and other days you wonder where this sensory-sensitive monster came from. Some sensitivities may go away, and new ones take their place. Also, it is possible to be over and under-responsive in the same sensory category.
For example, my daughter is also over-sensitive to tactile input, especially with regards to anything to do with her hair/head. She also has issues with physical touch – light touch bothers her. Trying to wipe her face, nose, hands, or diaper area can leave her crying and/or screaming, as she frantically tries to brush off the feel of your touch. And yet, she is under-responsive to oral tactile input. She has what they call “oral-seeking” tendencies, which is largely in part due to her feeding tube days. She grinds her teeth, she likes to bite things (it’s not uncommon to see her biting the counter, the table, toys etc…), she loves to eat things with very dry textures like flour. She will quite literally eat spoonfuls of dry flour. We have to be careful because she will try to “eat” things that aren’t safe (her past repertoire includes crayons, paper, dishwasher detergent pucks, hand sanitizer, ashes etc…)
These are just some samples of how Sensory Processing Disorder plays out in our home. This is by no means a full list of the ways that SPD affects our children. There is so much to Sensory Processing, people don’t realize it. SPD can be a real physical and emotional struggle for the child and caregiver. Sensory Processing Disorder can also often cause children to have other issues like low muscle tone, learning difficulties, fine and gross motor delays or disorders, low self-esteem and more.
SPD is like many other disorders in that there are no tell-tale physical signs, the child looks normal, and in most cases even appears to act normal to outsiders. SPD is one of those “behind the scenes” disorders. In the end, the parent’s role is:
1. With under-responsive issues, to give the input the child needs, in a safe way. When there are additional modulation issues, this input needs to given in a controlled manner.
2. With over-responsive issues, the goal is to expose the child to their sensitivities in a safe, non-threatening way, so as to gradually help them decrease their sensitivities. It is amazing the progress my son has made after a year of OT therapy, swim therapy and us working with him at home.
There are many therapy options out there to help children with SPD, including brushing therapy (which we are starting with both children), ABA therapy, Floor Time therapy, music therapy, listening therapy, visual therapy, water/swim therapy, equine therapy and others. Professional therapy may include the areas of occupational, physical and speech. Our son sees both an occupational and physical therapist.
3. Lastly, because children with SPD often feel fearful and anxious, it’s important to create a controlled/structured environment, so they don’t have to live in fear. They find security in knowing what’s coming next and what to expect. Part of this structure can include a sensory diet, which is a set regime of specific sensory input you use at different times of the day, to help your child maintain regulation.
So, I hope that I have given you a somewhat better understanding of what SPD can involve and look like.