my little disclaimer : i am not an OT, PT or physician or any other allied health professional that diagnoses or works with children with SPD. i am not a Sensory Processing Disorder expert. i am the mom of a wonderful little boy who has SPD and the following is my non-professional understanding of how SPD “works,” what behaviors my son has had/currently has, and what things we have done that have made a positive difference for him. the behaviors of your child and what does or does not have a positive effect on your child’s behaviors may be different.
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my son was diagnosed with Sensory Processing Disorder {SPD} when he was 3 ½. over the past 3 years i have been asked numerous times to explain what SPD is and why it’s not just “typical” childhood behavior. in the beginning, i was not very good at this. i would get frustrated that other people didn’t understand. i was angered by their responses –
- telling me it’s not “real”
- it’s the “latest labeling craze, like autism”
- “he just needs more discipline”
- “every kid does that”
- “my kid did/does that and they’re just fine”
- “it’s just a tantrum, ignore him and he’ll stop”
- “he’s just testing his limits”
well, folks, i’m here to tell you that SPD is real, it’s not a craze {neither is autism}, it’s not the result of a lack of discipline, every kid does not “do that” to the extent my kid does and it’s not a tantrum, it’s called a sensory meltdown {2 very different things which require 2 very different responses}. it’s not bad parenting, it’s SPD.
over time, i have learned a few things:
- not everyone truly wants to know what’s “wrong” with your kid when they ask what SPD is
- not everyone is going to be able to understand it – for several different reasons
- explanations need to be as short and sweet as possible
- be sure to tell them they don’t outgrow it
- look for the deer in headlights response or the “oh every kid does that” response to know when to stop talking
- when all else fails, and the conversation is going downhill, embrace your inner-Elsa and “Let It Go”
what is SPD?
if you Google SPD you’ll get several results, each one with an explanation of what sensory processing is and what sensory processing disorder is. most of them have somewhat lengthy explanations, a paragraph or two, and have examples to help it make more sense. while all of those sites do a great job at explaining SPD, they are written for the parent or professional who has gone in search of information in order to understand and learn. they aren’t the short and sweet definitions that the general public is looking for when they ask a SPD parent to explain it.
for example, here’s a rather formal definition of SPD {from the STAR Center website, which is a great resource!}:
“SPD is a neurophysiologic condition in which sensory input either from the environment or from one’s body is poorly detected, modulated, or interpreted and/or to which atypical responses are observed.”
this is a great definition. it makes sense to me, to professionals and to other SPD parents. but if i busted that out when talking to my family, my in-laws or other parents at school i’d get the deer in headlights look right away. and i would have immediately lost the opportunity to help them understand and to spread awareness about SPD.
after trying several different versions of explanation, here’s what i have found works best for me when i’m asked what SPD is:
it’s a wiring difference that causes the brain to either over- or under-respond to sensory input. the responses are intense enough to significantly interfere with everyday activities. it’s not something they outgrow, they have to be taught how to manage their responses appropriately.
and then i stop. the people who aren’t really that interested won’t ask any follow up questions. the ones who are truly curious, will ask more questions. i let the conversation unfold from there by following their lead and only answering what they ask.
i like this little definition because it’s not full of medical terms and it communicates that SPD is the result of a neurological difference in the brain instead of a learned behavior {thereby negating the “he needs discipline” and “it’s a tantrum” arguments}. it also let’s them know that while the behaviors may be similar to something a neuro-typical child does, these behaviors in a SPD child are magnified to such a high level that it interferes with the child’s ability to get through everyday life {negating the “all kids do that” argument}.
if the other person asks for more information, i’m happy to share with them. we usually end up talking about seekers and avoiders, the difference between tantrums and meltdowns, OT and behaviors specific to my son.
seekers and avoiders
so now you may be thinking…. seeker? avoider? meltdown? whhaaaa…..?????
here’s the way i understand it:
some kids with SPD are seekers, meaning their brains are under-responsive to certain types of stimuli and therefore they go seeking that input. other kids are avoiders, meaning that their brains are over-responsive to certain stimuli and they do their best to avoid that stimuli as much as possible. SPD kids can be only seekers, only avoiders or a combination of both.
sensory input modalities
we get sensory input from outside our bodies as well as from within our bodies. everyone is familiar with the classic 5 senses – sight, hearing, taste, touch, smell. those senses let us know everything that’s going on outside our bodies. but there are 3 more sense that give us information from inside our bodies – the vestibular, proprioceptive and interoceptive systems. say what??? i know, those were new words for me too.
you’ve probably heard about the vestibular system – that’s our balance system in our inner ear. it lets you know if you’re right side up, leaning to one side or about to fall down. but how about the other two? let’s discuss.
proprioception may be a new word, but it’s not anything you don’t already know. it’s how your brain knows where your body is in space and what your different body parts are doing. close your eyes, tip your head back and touch the tip of your nose with your finger. could you do it? of course you could! but how, if your eyes were closed? that, my friends, is proprioception!
interoception is another new word but you know this one already too. it’s the information your internal organs send to your brain. like when you’re hungry or thirsty or need to go to the bathroom.
more detailed information on all 8 of the senses is available on the STAR Center website.
how to process the information from each system comes “naturally” to the neuro-typical person. but for a child with SPD, they can be under- or over-responsive to 1 or all 8 of the senses. as a result, they don’t know how to deal with the lack of input or the overwhelming amount of input they are getting. regardless of which it is, they are struggling to process and that struggle can lead to a sensory meltdown.
tantrums vs. sensory meltdowns
a sensory meltdown may look like a tantrum to the stranger at grocery store, or even to family members who spend some time with child. but it’s appearance is where the similarity ends. a tantrum is a kid’s way of letting you know they are upset about not getting what they wanted. tantrums will stop when the kid gets what they want. tantrums are attention driven, so if you ignore the kid they will eventually stop pitching a fit. if you give in, the child learns that pitching a fit is an effective way to get what they want.
sensory meltdowns are an intense emotional response to being overwhelmed by sensory input and the kid does not have control over it {although they can learn control over time, but that’s a topic for another post}.
meltdowns do not stop if you ignore the behavior, they only stop once the stimuli is removed and the child’s sensory system returns to “normal for them.” to an SPD child, walking away from them while they are engulfed in a meltdown is basically the same as saying “i don’t care about you.” in that moment, they are drowning in an emotional response from too much sensory information. the SPD child needs help from a trusted adult to calm down, to sooth their inflamed sensory system and restore them to their “normal.” once in the clutches of a meltdown, they can’t do that alone and they may be scared by how out of control a meltdown can feel. walking away during their time of deep need is a pretty damaging thing. during a sensory meltdown, an SPD child is not giving their parents a hard time, they are having a hard time processing something and they need help.
what a meltdown looks like – for us
in our experience, meltdowns can last anywhere from 10 minutes to over an hour. they are exhausting for everyone involved and pretty much bring life to a screeching halt. as the only parent home during the day, if my son had a 1 hour meltdown, nothing got done for that hour. i sat with him, held him and rocked him until it passed. fortunately, my daughter was content to play quietly in her room and waited patiently for us to come out and join her.
to help you imagine how disruptive a sensory meltdown can be, think about this:
who has time to spend an hour sitting with only one child?
what could you/should you have been doing during that time?
what if the meltdown happens right before you need to leave for an appointment? {well, you’re going to be late or you have to call and cancel}
what if it happens at the store? {you leave your cart full of stuff right there in the middle of the aisle, head straight to the car and go home so your child can be in their “safe place” in order to calm down}
what if it happens at a restaurant? {you leave. i don’t care if you haven’t finished eating yet. you have to leave because your kid can’t meltdown at the table or in the bathroom – it’s not safe, it’s not helpful to the child and it’s majorly disruptive and disrespectful to the other diners.}
and that, right there, ladies and gentlemen, is why a sensory meltdown is nothing like a tantrum. that’s why SPD behavior and responses are not “normal, every kid does that” stuff. that right there is only one small example of how SPD interferes with everyday life and why it is a disorder and not like the “normal” behavior and/or responses of neuro-typical kids.
again, it’s not bad parenting, it’s SPD.
ok, it’s SPD. now what?
all of this may leave you wondering…. what can you do about it? how do you help these kids? how can you teach them how to process sensory information and to respond in an appropriate way?
that’s what occupational therapy {OT} is for. and i’m happy to discuss our OT experience with you too {in another post on another day!} but for now, the next time you see a kid freaking out at the store, don’t judge the parents. you don’t know if it’s a tantrum or a meltdown. remember….
it may not be bad parenting, it may be SPD.