I have come to the realization that I talk about sensory processing disorder (aka sensory integration disorder)quite a bit in this blog, yet I have never really explained what it is. I know it sounds simple and straight forward…..it means our senses don’t work properly….but do you know how that can affect our daily lives? With our kiddos it can cause behaviors that we just don’t understand. I came across a mom at a recent event whose child had sensory processing disorder and after talking for a bit, I found out that she didn’t even know what that diagnosis really meant. I try not to get clinical on here….I am not a doctor. I am just a mom who has lived with a child with sensory issues since the day he was born…..and I have done some research on the topic. So I thought I would tell you what I know and how it’s related to my kiddo.
Growing up we were taught that we had 5 senses; sight, sound, smell, taste, and touch. When it was first suggested that CJ had sensory processing disorder, I thought that it was a no-brainer….of course he did. He hated loud noises, I had to cut tags out of his clothes, his socks had to be turned inside out, he didn’t like his hair brushed…..he was the pickiest eater ever. As he progressed through elementary school, these issues seemed to get worse, so I thought I would read into it a bit. I was astonished at what I found out. They LIED to us……yes, our kindergarten teachers that taught us about the 5 senses were lying. Ok….well, maybe they weren’t completely lying…..but they didn’t teach us everything. There are 3 additional senses that I did not know about. I am going to give you a run down of all 8 senses, their technical names (in case there are doctors out there confusing the hell out of you) and some of the challenges our kiddos face if they have challenges with that specific sense.
1- Visual – This, of course, has to do with our eyes….how we receive light and other visual stimuli. If your kiddo has a visual sensory challenge, bright lights or sunlight might be a problem for them. Also, flashing lights….especially strobes, can send them into a tailspin. I have a friend who has challenges with light due to chronic migraines. She uses low watt Christmas lights all over her house. That might help your kiddo, too.
2- Auditory – This is all about sound….but not only strength of sound, it can be about how that kiddo’s brain receives certain tones. Basic challenges with auditory disorders can be problems with loud sounds. I once read that you know your kiddo has SPD when their mom always has ear plugs in her purse….or has mastered the ‘flush and run’ in public bathrooms (these are both items I can check on my list). When he was younger, my son hated the sound of the vacuum cleaner. I would have my mom take my son outside the house when I wanted to vacuum. This also went for days I wanted to mow the lawn. As he got older, I found that if he was in control of the noise, he was ok with it. Once I taught him how, vacuuming was one of his favorite things to do…..you know, before he became a teenager that has an aversion to house work. Back on topic, though, sound is only part of auditory disorders. The other part is how our kiddos hear things. There may be certain tones and sounds that their brain just doesn’t process correctly. It’s not that they don’t listen to us….sometimes they just simply can’t process what we are saying by how loudly or softly we are speaking or even how we are forming our words.
3- Olfactory – This is about the sense of smell. This can be a challenging one….especially if you enjoy eating out. My son refuses to go into a Subway Sandwich shop because he doesn’t like the smell of the bread baking. He loves the smell of things baking at home, but there is just something about that Subway bread he can’t stand. When he was younger, he wouldn’t want me to light scented candles around the house. Even now, I usually run a scent by him before I buy it. There are some kiddos that have the opposite problem, they have an under-sensitive olfactory system. This can drive parents nuts, especially when it comes to hygiene and cleanliness. This is not to be confused with smelly teenager syndrome……they can smell it, they just don’t care.
4- Gustatory – This all about oral senses and taste. This really could be called the chicken nugget syndrome. I don’t know what it is about those things….but so many kids with oral sensitivities will only eat chicken nuggets. I once suggested to my son that he should write a blog all about chicken…the best franchises to eat them….the texture of the breading…..the spices used etc. For years, my son was a chicken expert. He has since become quite the foodie….but it took many years for that to happen. This is also one of the sensory challenges I personally have. Mine has to do specifically with texture. Unfortunately, there are many fruits and vegetables that I just don’t like the feeling of in my mouth. Onions, for example…..I love onions. The flavor is wonderful…..but to get a big piece of onion in my mouth makes my skin crawl and will ruin my appetite for the rest of the day. When I cook, I use big chunks, so I can get the flavor with out actually eating it.
5- Tactile – This is all about how we physically feel things, touch. I have pictures of CJ when he was little, sitting on a beautiful green lawn, holding his hands up. I have another one of him sitting in a pile of fall leaves, crying….with his hands up. And still another one sitting in snow….with his hands up. You get the picture. He didn’t like the feeling of anything that was in extreme contrast to his world. He loved the satin edging on his blankie, he loved to grip soft rubber toys….anything that was smooth. If it was rough or contrasting in texture at all, he just didn’t like it. To this day, he prefers to take a bath than a shower…..he used to say ‘the shower spray is pokey on my skin’. An interesting analogy I heard about tactile disorder was to imagine a cold winter day, your heat isn’t working, you have to take a shower before work…..you step onto the cold shower floor, with the cold water pouring down on you feeling like little bits of icicles on your skin. This is how tactile dysfunction is for our kiddos. Everything is attacking them like a cold icy shower.
6- Vestibular – This is the sense of balance. Do you have a kiddo that falls out of chairs for no reason? Do you have a kiddo that can’t ride a bike….even with training wheels? Do you have a kiddo that falls up the stairs? If so, that kid probably has vestibular challenges. This can be a hard one to deal with….and frustrating for a kid that just wants to fit in. For the sake of full disclosure….CJ is the kiddo in every scenario above. The hardest thing for him to deal with was riding a bike. All of his friends would go bike riding and he just couldn’t do it, even with training wheels. By the time he was 8, he was starting to get ridiculed about it. One of the things that I read helps with this is a trampoline. It helps to adjust their internal balance. I thought it was worth a try, so I enrolled him in gymnastics. In about 6 months, he was riding that bike. To this day, bike riding is one of his favorite things to do.
7- Proprioception – This is all about the sense of space……or where their body is in conjunction with everything else around them. The easiest way I have of explaining this is the line at the grocery store. Do you have a kid that doesn’t understand that they are so close to the person ahead of you in line that they are practically hugging them? Does your kiddo constantly get in trouble in school for touching his/her classmates in line (this is mostly for elementary school students)? They may not know how close they are to that other person. Their sense of space…..or how much space is between them, may be skewed. This one….along with vestibular challenges, tend to be the sensory issues that get kids in trouble most at school, especially for younger students. They may be considered class clowns or a total clutz. Either way they get laughed at by the students and reprimanded by teachers for something they are not in control of. This can wreak havoc on a kiddo’s confidence and self-esteem.
8- Interoceptive – The trickiest of them all – this is the sense of what is going on internally. I once read an explanation about interoceptive disorders being a comparison to a traffic jam. The brain knows what it wants to do, but can’t relay the message to the rest of the body. This type of disorder usually comes about in something called a sensory motor disorder. One of the motor disorders that is really misunderstood is called dyspraxia. This can effect the fine motor skills. As a part of this dysfunction, my son has something called dysgraphia. This pretty much means that writing is a challenge. Truthfully, it has taken many years of practice, but his hand writing still looks like a 2nd graders. It also takes him a long time to write one sentence. This has hindered him in so many ways throughout his education. His frustration with his writing has effected every class in the past(with the exception of technology classes). Even though I have the use of a tablet/word processor written into his IEP, very few teachers actually read his IEP or follow it. Interoceptive disorders, specifically dyspraxia, tends to be the one that effects a child’s school experience the most.
For many of these sensory challenges, especially in younger kids, they don’t know how to deal with their body’s inability to react the way they want it to, so they end up frustrated and most often, having a tantrum. The way I used to explain it to teachers was, imagine you were working at the computer and regardless of which key you pressed, it would just freeze up and you wouldn’t be able to accomplish anything…..would you be frustrated? This is how these kids feel when their brain doesn’t send the info to the rest of their body….like a frozen computer.
Statistically speaking, 1 in 25 kids has some type of sensory processing disorder. That’s 1 kid in every classroom……yet most people (especially teachers) don’t even know it exists. Kids with SPD are also very often misdiagnosed with ADHD. Doctors have a really hard time separating the two…..especially because a lot of kids with ADHD also have SPD. This also goes for people with mental illnesses, neurological disorders and traumatic brain injuries. Sensory Processing Disorder isn’t even recognized as a true diagnosis….because it doesn’t have an ICD-9 code …..which is the bible of medical diagnoses. Because of this, when attempting to get evaluations or treatment by an occupational therapist (who most often deals with SPD) it is not covered by insurance. When we were attempting to get my son’s first IEP, it was years before his bipolar diagnosis, so they gave him an ADHD diagnosis, because it was the only way to get him help in school. They really need to recognize SPD as a true disorder of its own so more kids and their families can get help. We also need to educate our educators so they know what to look for with these kids and can find better ways adjust their learning environments.
For parents of SPD kiddos, it can cause frustrations because we don’t know what is sensory challenges and what is simply bad behavior. The best thing I ever read was The Sensory-Sensitive Child, by Drs Smith and Gouze. They are both moms of kids living with these disorders. Reading that book not only educated me on the senses, but opened my eyes to how I reacted to my son’s challenges. I was no longer quick to reprimanded him or punished him for things that were beyond his control. I, instead, looked at each action and tried to determine what caused it before I reacted to it. I then learned what his triggers were and how I could help him in a positive way by teaching him coping skills. In the end, it changed our relationship for the better.