By: Melissa Ragan
Part 1: Living with SPD
In many ways, my 7-year-old daughter Lulu is like other kids her age. She fights with her siblings. She plays soccer. She trades Pokémon cards. She’s precocious, and wants to be a marine biologist when she grows up.
But in other ways, she is not a typical second grader. She has above average intelligence and reads at the 5-8th grade reading level. She refuses to wear certain clothing or eat foods with certain textures. She has a blanket – the same one she’s had since she was a baby – and rubs the tag against her face when she’s feeling upset. And she jumps constantly, which makes people think she has ADHD. But Lulu actually has a sensory processing disorder (SPD), sometimes called sensory integration dysfunction. Kids with SPD have challenges sending and receiving messages from the five senses, causing them to be over or under sensitive to the world around them.
It is unknown how many children have SPD, but research suggests as many as 1 in 6 children, or 1 in 20 children are impacted by SPD. Researchers haven’t determined what causes SPD, but genetics and environmental causes have been noted as possible culprits.
There is some controversy around SPD. It is not listed as an independent health diagnosis in DSM-5. It is not one of the 13 disabilities covered under the Individual with Disabilities Act (IDEA). Some clinicians attribute the symptoms of SPD to other disorders, like autism, anxiety disorders, developmental coordination disorders, or ADHD. In a 2012 brief, the American Association of Pediatricians (AAP) cautioned physicians against using SPD as a specific diagnosis. As such, Lulu’s weekly occupational therapy sessions take place at a private clinic instead of at school, and we battle with our insurance company to pay for these sessions – even though a leading neurologist has ruled out the possibility of any other disorders.
I’ve had relatives, friends, and even strangers tell me that Lulu is just being a brat. As the mother of four children, ages 6-18, I can tell you that’s not the case. And other families with children who have SPD will tell you the struggle is real.
For example, on a recent weekend, I listed some of the SPD issues that impacted Lulu:
- On Saturday, I accidentally put butter on her toast. I scrapped it off and tried to cover it up with her special brand of peanut butter, but she knew. Something about the taste, smell, or texture tipped her off after a single bite. A 15-minute crying session accompanied by her scrapping her tongue like I had poisoned her ensued, during which I made more toast. This time without butter.
- She couldn’t wear a new shirt because it had 3/4 sleeves that rubbed against the skin on her arm.
- Her head is so sensitive that brushing her hair is our most dreaded daily task. It hurts her despite trying 12 different types of brushes, and every kind of detangler and leave in conditioner on the market.
- Conversely, she often doesn’t feel pain on other parts of her body. For example, while ice skating on Sunday, she fell about 100 times and got back up every single time and went right back at it. When we got home, I noticed her knee was bruised so badly it was swollen to three times the normal size for two days and yet she never made a peep about it.
So what’s a parent to do with a kid like this, when she wants to come along to an event that will be over stimulating?
In our home, we have dinner together as a family most nights. Sometimes those discussions turn political. Not overtly so, but in a way that makes it a safe place to talk about what’s going on in the world. In the diverse community in which we live, our kids have expressed concerns about their friends, and we have tried to alleviate them as much as possible. But they persist.
Back in January, I attended the Women’s March in Washington. Both of my daughters wanted to go, but there were too many reasons why bringing them wasn’t an option. When I arrived in DC, I was glad I didn’t. I saw the setting through Lulu’s eyes and counted every potential assault on her senses. I knew I had made the right decision.
But as International Woman’s Day approached and I announced that I’d be going into NYC to take part in a few different events, there weren’t as many reasons for me to say no. So I didn’t. I knew it would be tricky, but I felt that it would be doable. It helped that I would be among friends and colleagues who understand kids with special needs.
Both girls’ excitement grew in the days leading up to the event. I explained exactly what we were doing and why it was important. I planned the schedule in my head over and over, making sure to take Lulu’s sensory “diet” into consideration. And I tried to think about everything that might throw a wrench into the day and plan around it. But of course, you can’t think of everything…
Part 2: Event Day
Normally, I try to stick to a normal routine, as much as possible. The day of the event was no different. I woke my daughters around the same time as usual, but it wasn’t long before the first SPD struggle ensued.
Struggle #1: I had laid out matching clothing for the girls: red pants and a red long-sleeved shirt (any parent will tell you it’s easier to keep an eye on kids this way). I had purchased a “Girl Power” t-shirt for them to wear. However, since it was still March in the northeast, I wanted the girls to wear the t-shirt over the long-sleeved shirt. Wearing the t-shirt over the long-sleeved shirt wasn’t a fight I was going to win or even try to. I gave up on that one.
Struggle #2: I decided that as a special treat, we’d visit a local woman-owned bakery for breakfast. We arrived and I let each girl pick out a breakfast treat. Of course, there were many tempting options. About $22 later, we arrived back at home where Lulu took just two bites of her chocolate chip muffin. I tried to get her to eat more, knowing that as soon as she got hungry, I’d have a hot mess on my hands. But she refused. The muffin had too many chocolate chips and they weren’t the right size (they were too small) for her. We initially tried picking them out but I decided to just pack extra snacks.
One routine I was not going to skip was her morning trampoline time. We keep a small trampoline in our living room, and Lulu spends 15 minutes twice a day bouncing away. It helps to give her sensory input and keeps her a bit more focused throughout the day. She also has a small indoor swing that we use which serves a similar purpose. Let me tell you that these two items are the best $50 I’ve ever spent!
Sometimes, Lulu uses a special sensory brush which we use to help give her input when other options aren’t available, but she didn’t want to bring it fearing it would make her stand out. We’ve also seen this response in her classroom when it comes to using the Wiggle Seat she has to help give input throughout the day or weighted vests that she can wear.
Once we got our sensory diet taken care of, we were off! The day wasn’t too difficult, although there were a few times when I could tell Lulu’s senses were suffering. For example, on the train ride into the city, we sat near the door and the noise of the train was loud as passengers opened the door to pass between cars. To help with this, she put her hood on and I tried to distract her with coloring. Later in the day, we were on the sidewalk as a deafening ambulance blared by. There wasn’t much to do about that but cover her ears and wait it out. On the subway, the smell of something offended her, but the excitement of taking her first subway ride overrode a meltdown.
The way we combated sensory overload most effectively was by taking frequent sensory breaks. We stopped at a lake in Central Park and she ran her hands through the sand on the beach, and collected rocks along the way. The result was similar to another great sensory input technique: the bean and/or rice box. Every playground we encountered merited a sensory input visit. We especially liked the one in Washington Square Park, which had a big web for kids to climb on. And of course, we stopped to get food, treats (at woman-owned businesses) and drinks frequently to keep those taste senses engaged.
My main concern about the day was for the rally and march itself. I wasn’t sure how many people would be there or how crowded the event would be. But we luckily secured a space for all of us with plenty of breathing room. My only problem was that Lulu got distracted by some buttons and absent-mindedly walked away.
As the rally wore on past 6:00 PM, we were all starting to feel a little tired after our long day of exciting adventures and decided to find a place to grab a quick bite to eat before heading back home.
On the hour or so train ride out of the city, I let the girls watch a movie on my phone so they wouldn’t fall asleep from the lull of the train. Overall, I was really glad that I overcame my worries and took my girls on this adventure!
For more information about SPD, check out Understood.org, or for a unique perspective about what it’s like to live a day in the life of a kid with SPD, read this. You can also check out the Out of Sync Child, a book by Carol Kranowitz.
*Please note that links provided in this article are for informational purposes only and should not be interpreted as endorsements of specific products or services, nor has the author or ONEder received any benefit from including this information.