I'll never forget how alone I felt when I started to realize something might be wrong with my daughter. How scared I was as I tried to express my concerns to those around me, and was met mostly with, “She’s fine, it’s all in your head.” Or worse, “You just baby her too much. You need to let her toughen up.”
Yeah, that hurt. Especially as I wondered… what if they’re right? What if this is my fault?
Except, I knew it wasn’t. Deep down in my gut, I knew that something else was going on.
I just didn’t know what yet.
Sensory Processing Disorder (SPD) looks very different from kid to kid, which is part of the problem. We all have a basic understanding of some of the more common neurodevelopment disorders—like ADHD or dyslexia—that kids might deal with. But SPD has a much longer list of potential symptoms, mostly because there are eight different sensory systems that can be affected. And while some kids might be extreme sensory seekers, others are sensory avoiders.
For my daughter, the first signs of SPD actually presented in her very first hours of life. She wanted a bottle in her mouth at all times. The two ounces every two hours the nurses were trying to get me to limit her to just weren’t enough. She was famished.
Or at least, that’s what I thought at the time.
It would be years before I would realize it wasn’t that she was hungry, it was that she was desperate for the oral stimulation that eating provided.
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She never took to pacifiers, something I was vaguely smug about. But as soon as she learned how to bring her hands to her mouth, she started sticking as much of her loveys as she could into the back of her jaw to chew on. This became a daily, hourly habit. Sopping wet loveys were scattered around our home and required washing several times a week.
When it came time for solids, I realized around her first birthday that my little girl didn’t like her food to be warm at all. In fact, she preferred everything to be frozen. I could get the kid to eat raw spinach, so long as I gave it to her straight from the freezer.
But still, I didn’t think anything was all that off.
It wasn’t until she was 2 years old that I started to get concerned. She was suddenly having these massive fits out of nowhere. They lasted for hours, and there didn’t seem to be any way for me to calm her down. She would hit me, hit herself, scream and beg not to be touched.
The thing I’ve learned about SPD is that treating it isn’t about “curing” a child of these behaviors.
It scared me. And as a single mom, there wasn’t anyone else around to witness what was happening. I tried to describe her meltdowns, which were occurring several times a week, to my friends. But all they saw was a sweet, happy girl they couldn’t picture freaking out to such an extreme.
It was the start of feeling very alone in what I was witnessing.
Over the next few months, I began to recognize several new habits of hers. If we were outside and a plane flew overhead, she would quickly clap her hands over her ears and cry out, “Too loud, too loud!” We couldn’t go to movies, because the noise was too much. She hated water, and trips to the pool with my friends and their kids never turned out well.
Then there were other things. Scarier things. Like the fact that she didn’t seem to recognize pain in the way other kids did, and even sometimes seemed to seek out painful stimuli. Or that, while she hated being upside down and avoided it at all costs, she would spin and spin in attempts to be forever dizzy.
But when I pointed these things out to friends and family, most seemed to think I was overreacting. A lot of what I was describing seemed consistent with autism, or at least, what I knew of it. But this social little girl who generally loved to be hugged and was always making eye contact clearly didn’t have that. So most people thought I was making a big deal out of nothing.
Just weird kid quirks. Nothing more.
Eventually, I stopped talking to other people about what I was seeing. But I did bring it up with her doctor, and she actually listened. In fact, she set us up with an appointment with a behavioral therapist almost immediately. And it was at that visit, for the first time, that someone mentioned Sensory Processing Disorder to me.
I read a lot of stories that didn’t sound anything at all like my daughter, but I also realized quickly how different so many of these kids presented. I came across naysayers as well, those claiming that SPD wasn’t real. But the more I read, the more my daughters little “quirks” made sense.
We had to go through an evaluation process, and it became clear over the next few months that my daughter’s SPD was part of a larger diagnosis. But everything after that initial behavioral therapist appointment became easier. She gave me tools to help address my daughter’s triggers, and when we were transferred over to occupational therapy a few months later, I learned even more about how to help my little girl adjust to the world around her.
My daughter’s SPD is most obvious when it comes to how she seeks oral stimulation. But through working with our OT, I can now get her to eat meals that have been warmed, and she no longer goes through her day forever needing something in her mouth (a blessing, really, as I had been making a lot of calls to poison control over things she was attempting to eat previously.)
RELATED: Identifying Sensory Issues in Baby
It’s still an issue for her, and always will be. But we’ve found ways to acceptably address that need of hers—like allowing her to have chewing gum at a much younger age than her peers. She asks for gum almost every day now, and does a great job of keeping it in her mouth and no longer swallowing it. I’m told that when she reaches school age, we’ll be able to get permission for her to chew gum throughout her day and that doing so will actually help her to concentrate in classes.
The thing I’ve learned about SPD is that treating it isn’t about “curing” a child of these behaviors. Instead, it’s about recognizing triggers and helping the child to find acceptable ways to treat those urges—both in terms of seeking and avoiding behaviors.
The difference in my little girl today, compared to where she was before her SPD diagnosis, is incredible. To the point that I’ve even had those same people who questioned me over my initial concerns, come back and tell me now that I was clearly right, and that my little girl is lucky to have me. The fits are a thing of our past, she’s great about recognizing some of her own triggers, and she handles everything from schedule changes to new locations so much better than she once did.
So to the mom who fears her child might have sensory processing disorder, know that my heart is with you. You are not alone in this, and you are not crazy. You are also not a bad parent.
Listen to your gut. Ask questions. Seek out referrals.
And don’t discount the possibility just because your child has a different presentation of SPD from someone else’s child.
Help does exist, and there are tools for addressing your child’s sensory needs.