I think that some parents with "neurotypical" children look at my child, who (for the most part) looks "normal," and wonder what the fuss is all about. Why does he need occupational therapy, and what is OT anyway? Why does he need special accommodations in the classroom? They think, my child doesn't like seams in her socks, or hates the texture of Jello, or doesn't like loud noises - that is just part of being a kid. Why do you make such a big deal about it?
You could say the same thing about anxiety, or depression, or a host of other invisible diseases and disorders, and the answer is the same. Yes, everyone has bad days, and every kid has things that bug them, whether it is tags on clothing or certain sounds or a type of food. But when it interferes with daily life, that is when it becomes something more, a disorder.
Therefore, I wanted to let you walk one day in my son's shoes. He has Sensory Processing Disorder, or SPD, or, as I often put it because it sounds easier to understand, sensory issues. For the most part, his SPD is mild, and that adds to the whole "he looks normal" issue.
First, a quick definition or two. SPD is a disorder where a person's senses do not communicate with brain in a normal manner. Their wiring is different. This can manifest in different ways - either a child is under-reactive (it takes much more stimulation than normal for a child to feel anything), or over-reactive (everything is too loud, too itchy, too much). Some kids are under-reactive or over-reactive in every sense, and some are over-reactive in some senses and under-reactive in others. There are the five senses we all know - seeing, smelling, tasting, hearing and touching - and a few others - proprioceptive (knowing where you are in space), interoceptive (the body's sense of what is going on internally) and vestibular (your sense of balance and how to move your limbs and trunk to achieve motion).
A Typical Day in the Life of an SPD Child (Well, MY SPD Child)
6:30 a.m. - Wake up. Run to the bathroom, because there is very little time between feeling the sensation of needing to go and the actual going. Start talking and singing to yourself, because you need the stimulation of sound and your mind is constantly going.
6:45 a.m. - Breakfast. Eat the same thing every day, because routine is important, and only certain foods are acceptable. Because of your sense of taste is over-reactive, strong tastes and unfamiliar tastes can make you gag. You certainly don't want anything spicy, or anything with a certain texture, like rice.
7:00 a.m. - Pack a lunch. Again, you eat the same thing most days. This year, you've gotten more adventurous and tried school lunches several times. You tried pizza for the first time in 1st grade and hamburgers, chicken sandwiches (it's just like a giant nugget on a bun, you said) and hot dogs for the first time in 2nd grade.
7:10 a.m. - Shower. You often just stand in the shower and sing, because you get easily distracted, and you aren't a big fan of water on your head. But every few days, your mom makes you wet your head and she washes your hair. Often, you get angry and you end up stomping your feet when your mom tells you to hurry up. You brush your teeth gingerly. You will only use one brand of toothpaste - any other leads to a meltdown and major gagging, so your mom makes sure to buy two tubes every time so you don't run out. Your mom also insists on brushing your teeth every few days, to make sure they actually get clean. She is trying to give you more independence, but still has to help sometimes.
Your hair has to look a certain way, or it really upsets you. You don't like it when you can see your hair. For Crazy Hair Day one year, your mom tried to put hairspray on your head and get it to stick up, but you screamed, "Get it out! Get it out!" the second she sprayed your hair, and you had to hop back in the bathtub so she could wash it out. Your mom isn't worried you will ever have an earring, tattoo or doing something crazy with your hair - it would bother you too much!
7:25 a.m. - Getting dressed. Luckily, you are not that bothered by clothing texture. Many kids with SPD are. You put on whatever your mom has laid out for you. At least, you start putting them on. But then you realize you need to tell your stuffed animal something, or a book or toy catches your eye, and your mom fusses when she walks in three minutes later, and you only have your pants half-on and you're playing instead of getting dressed. She tries to stay patient, knowing that your distractibility is part of your SPD, and not something you're doing to drive her crazy.
You get ready to walk out the door, but reach the back door leading to the garage and stop. You need to coordinate opening the door and holding it open while you walk out and down the steps. For "normal" kids, this is automatic, but it is not for you. You have to actually think through the steps and figure out where to put your hands on the door for balance. As you get older, this "pause" to figure out how to move is shorter, and will eventually go away. You've even managed to climb the stairs holding things in your arms. But when you step into a new place, you almost always stop to orient yourself to make sure you don't fall.
7:50 a.m. - School. There is a morning routine in your classroom, and you try really hard to remember all of the steps. Sometimes, your teacher has to remind you or move you along when you get distracted by someone's new shoes, or how the white board is flickering. You sit down to write the Morning Message in your notebook. Since you get to read when you finish, you do it quickly, and your handwriting is illegible. You can write legibly, but it takes a lot of concentration, and you usually don't bother.
If anyone questioned why you needed accommodations in the classroom, all they would need to do is watch you. Even when you're engaged in something, some part of your body is moving. You flap your arms when you are excited, or nervous. You bounce up and down or jiggle your legs. Your eyes don't stay on one thing for more than 5 seconds (unless it is a screen or a book).
Because you constantly need to move, you sit on a inflated cushion on your chair. It helps you wiggle a bit without actually really wiggling enough to distract others. Sometimes your teacher has to remind you not to talk to yourself during a quiet time. Sometimes, she even has to move down your color for talking, because it is not fair to move others down for talking and not you. Luckily for you, you aren't a child who is bothered by being moved down. You get a little upset, knowing that means no dessert for you that night, if you don't move back up, but you don't have a meltdown.
When it is time to work on an individual assignment in class, you often have trouble focusing. If it is something that interests you greatly, you will find it easier to focus, but even then, the tapping of a pencil, or someone walking by in the hall, or your classmate's colorful pencil might catch your interest. Every input you get from one of your senses is given the same weight in your brain - you have no back burner or background noise. You can learn coping mechanisms to make this better, and you are improving. But it is a slow process. Your teachers learn that in small groups, you need to be in the center of the group, right in front of the teacher. In fact, sometimes when she is teaching the whole class, she has you sit on the carpet in front of her so she can keep your attention on her. But you don't always complete independent work. Your teacher understands why, most of the time. Sometimes, she sends work home with you. Whenever possible, if the work involves writing on a worksheet, the teacher will let you type on an iPad (using a great app called SnapType) so you don't get too frustrated with trying to fit things in boxes. You are not good with spatial relations when writing.
Sometimes, even when you're not looking at the teacher, you're still absorbing what she's saying. You're just not good at eye contact. Other times, you're not paying attention at all. It is hard to tell the difference, and since you're a smart cookie, you've always understood the material and answered the questions correctly. But as you get older, that might change, and your mom and your teachers worry about how to teach you to focus yourself.
When it is time to go to lunch, or a special (art, PE, music, library, science, technology), you get to be line leader. Your teacher has learned the hard way that if you're in the middle or back of the line, you stop to look at something on the wall, or in a classroom or on the floor, and the class leaves you behind. However, if you're right in front, you stay with the teacher and get where you're supposed to be.
You don't have a lot of friends. Your social skills are lacking, and you shy away from contact with other people. You don't like rough-and-tumble games like some boys do. Because your balance is not great, you don't like slides, and you take a long time to climb a ladder or go up steps. You live your life in a dream world, so often you walk up to people and start talking about something that is going on in your imaginary world, and they have no idea what you're talking about, and don't understand how to interact with you. Sometimes you play tag with other kids, but you are not very fast. They either figure out that they have to slow down for you to catch them, or they just run away from you the entire time, laughing that you can't keep up. The nice ones let you catch them. Not all kids are nice.
Honestly though, it doesn't bother you too much that you don't have friends. You like to play with other kids, but are also happy playing on your own. Your parents are more upset over this than you are, and hope that you will make a few good, true, friends eventually. But they also treasure your self-confidence and contentment in playing on your own. You are comfortable in your own skin in a way that not many kids are, and that is something we want you to always be.
After school - Transitions are really tough. You get absorbed in devices - TVs, iPads, computers. Mom has to cut you off and that always makes you mad. You tend to melt down a bit when she makes you turn the device off and practice piano and do your homework. Your mom tries to be patient, but sometimes she gets frustrated and you lose a privilege. She hasn't figured out yet how to give you the time you need to decompress, but not lose you to the lure of the screen. She think that every kid has this problem, and it's probably not entirely because of your SPD, but it certainly doesn't help.
But you love music, and always have. You practice your pieces for your piano lesson, and get mad every time your mom corrects you. You learn pieces by ear, memorizing how they sound. Your mom (and your piano teacher) are trying to get you to sight-read notes, but it is tough, probably because the ability of your eyes to change focuses, from the sheet music to the piano keys, isn't very good. Plus, your fingers tend to drift off the keys where they are supposed to be, so you would rather look at them than the music. But once you learn a piece, you remember it, and can play it by memory. You also love to make up your own pieces. In spite of your complaining about having to practice, you really do enjoy it once you get started, and you often will play the piano (and the keyboard, and the guitar, and the drums) for fun.
Out in the World - You move differently than other children. Your gait is a little weird, and you tend to veer off on the diagonal, so it is always interesting walking through a crowd with you. You tend to bump into people if Mom and Dad don't keep a good grip on you, but you don't like that.
Loud sounds can upset you. Mostly, you just cover your ears, and you've learned to cope with it. But every once in awhile, something really catches you by surprise. You hate walking by an idling truck or motorcycle, because they can be very loud when they start up and take off. Mom and Dad have learned that games that involve popping a balloon are really hard for you, because the cumulative effect of constantly popping balloons wears your nerves thin and lead to a meltdown.
Eating out has always been a challenge, as you tend to like to eat the same things. Slowly, you've increased your list of acceptable foods to include enough things to make eating out possible. Well, almost everywhere has chicken and french fries, but your parents do like for you to get vegetables every day, and that is hard when everything veggie-related comes with a sauce (you don't like them) or with rice (also a no-no, makes you gag). But your family has gotten adept at checking online for children's menus and helping you make good choices. Restaurants almost always have broccoli or carrots, and you love those, and are willing to let your parents substitute veggies for fries sometimes.
6:00 - Dinnertime. Most nights, your mom fixes two dinners - one for you and one for herself and your dad. You eat baked chicken (cooked in olive oil and seasoned with a few spices, but nothing spicy) and vegetables almost every night. You like the frozen bags of broccoli, cauliflower and carrots that steam in the microwave, and canned carrots cooked with brown sugar and cinnamon. Sometimes, your mom buys little quarter boneless hams instead of chicken, and you love those, too. Now that you will eat pizza and subs (turkey and/or ham, with swiss or provolone cheese and yellow mustard), you can eat takeout with your parents on the weekends.
7:30 - Time to read. You lay on the bed and read to your parents for 10 minutes. Then, they read to you for 10 minutes. When they read to you, you can't stay still. You wiggle from one side to the other. You take off your socks and tie them around your feet. You fiddle with the clock beside the bed. Sometimes, you even sing. It's not that you aren't enjoying the book. You just need a little more stimulation than listening to a book is giving you.
8:00 - Time for bed. You thrive on a schedule, so even during the summer, your parents try to stick to the schedule. You are allowed to read in bed, and you often do. Sometimes you get up and make signs for your imaginary class, or for an exhibit you're making in your room, or for your library. Your father gets frustrated with your "messes," but your mind in constantly going and imagining new things. Sometimes, you just have to get the thoughts out and written down (even if no one, including yourself, can read them).
9:00 - Sleep. You usually are asleep by 9, and sleep well until the next morning. Your parents check on you, and tuck you in. You often have your sheets tangled up in your legs, because you turn over a lot, trying to get the wiggles out and get comfortable. If you're not asleep, it's because you're reading and don't want to stop. Your mom understands that all too well. Your parents gently insist you turn off your light and go to sleep, and you do.
I hope that helps you understand just some of the challenges of having SPD. If you ask another mom of a child with SPD, her child's day might be totally different. In fact, one of my friends whose son has SPD is pretty much the complete opposite of my child - he is athletic, high-energy, under-sensitive to stimuli, daring, and highly sensitive. He wants friends and sometimes acts out to make others laugh. So while his issues are completely different than my son's, the underlying problem is the same. It is finding a way to regulate the information you get from your senses and have your body respond to them in the correct manner.
Occupational therapy can help with this, from giving children an outlet to move their bodies and learn how to correctly sequence limb movement to hop or skip or jump, to teaching them fine motor skills. It gives kids a safe place to explore sensations they don't like (such as digging through dirt or shaving cream to find objects), allow understimulated children do "heavy work," like pushing full laundry baskets, that helps them regulate their need for activity and teaches techniques to parents, like brushing and joint compression, that can calm a child's reactions to stimuli.
If you have any questions, please ask me. I am happy to talk about Sensory Processing Disorder, and why my son needs a little extra help in the classroom. I would love for more parents to be aware of SPD, and how to talk to your children about people who are "different," because we have all have things that make us special. Just like my son wouldn't want to be teased about sitting on a cushion in class, another child wouldn't want to be teased because her hair is red, or she is left-handed, or he walks with a limp, or he likes the color pink, or she like superheros more than princesses or he sticks his tongue out when he shoots the basketball. If we teach our children (and ourselves) to walk in another's shoes and celebrate our differences instead of wanting to conform to the "normal" (whatever normal is), then I can't help to think that our society would be a better one.
