5 Things I Wish People Knew About Parenting a Child With Sensory Processing Disorder

One of the hardest things about parenting a child with sensory processing disorder is the fact that it’s not recognized by our medical, mental health, and educational systems as an “official” diagnosis.

Despite decades of research, including thousands of peer reviewed studies attesting to its prevalence among children, Sensory Processing Disorder did not make the cut for the latest edition of the Diagnostic and Statistical Manual- the guide (read: Bible) used by psychiatrists, psychologists, pediatricians, therapists, and social workers in reaching a diagnosis.

According to many of these professionals, SPD doesn’t exist.

This is infuriating for a number of reasons. If your child has SPD, you know, without a shadow of a doubt, that:

1. SPD absolutely does exist.
2. SPD impedes your child’s daily functioning in ways that are palpable, overwhelming, and debilitating for both you and your child.
3. If SPD received the recognition it deserves from our medical, mental health, and educational systems, your child would be much more likely to receive the support he needs in order to thrive.

But, there’s no use crying over spilled milk! It took 14 years, and a lot of politics and contention, to revise the DSM IV, so it doesn’t make sense to hold our breath with the hope that SPD will make it into the next edition. Instead, we can focus on spreading awareness. We can speak up and educate our family, friends, teachers, and pediatricians about SPD and how it affects our child. The more information we put out there, the better off our kids will be.

So, here are 5 things I wish people knew about parenting a child with SPD….

1. Sensory Processing Disorder is a real condition that affects my child. If I had a nickel for every dismissive comment I’ve received from people, including family, friends, strangers, even pediatricians, in response to my describing sensory processing disorder and how it affects my older son, H, I could fund my own study!

No, Sensory Processing Disorder did not make it into the DSM, but neither did Autism until 1980. Does that mean that Autism didn’t exist before then? Science often lags behind people’s lived experiences. We have to be careful about discounting someone’s experience based on both our own and society’s lack of understanding.

The truth is, there are mountains of research on sensory processing disorder. The SPD Scientific Workgroup estimates that one in six children between the ages of seven to eleven are affected by SPD and there have been several studies showing that children with SPD have different physiological responses to sensory stimuli than typically developing children (McIntosh et al., 1999; Miller et al., 2012; Schoen et al., 2009). To read up on the latest research, you can click here.

2. SPD affects my child’s daily functioning and can make parenting extra challenging. Imagine if you didn’t have a good sense of where your body was in space. When you were upside down, you had no idea where you were. When you were on a swing, you didn’t know how fast you were going or whether you’d ever stop. When you were in crowded, dynamic environments like playgrounds or birthday parties, your lack of body awareness was heightened, causing you to go into a full-blown panic.

Imagine if you didn’t know how much pressure to use when holding a pencil or a crayon, making it difficult to write and color.

Imagine if things like running, skipping, and jumping didn’t come naturally to you. Imagine if you frequently tripped and fell, bumped into things, and were described by others as “uncoordinated.”

Imagine if every time you heard a loud noise, your brain registered it as a “threat” and it sent you into a fight or flight. Imagine if certain textures did the same thing. Imagine if your eyes were so sensitive to light that when you went outside without sunglasses, it was so painful that you screamed as if someone was torturing you.

This is what daily life is like for H. It’s no walk in the park and neither is being his parent. Kids with SPD have nervous systems that are on “high alert,” resulting in more frequent and more intense fight or flight responses- or meltdowns. As a parent of a child with SPD, you become good at anticipating and taking measures to thwart meltdowns.

But, you can’t always predict when one will strike and even when you can, sometimes you’re so exhausted, so spent, that you just don’t have it in you to effectively deal with them. You find yourself responding with impatience, frustration, and anger. And then the guilt sets it. On your good days, you extend yourself grace and forgiveness but on your bad days, you feel defeated and you wallow in self-doubt.

We all have challenges. Parents of kids with SPD recognize that there are far worse things that people have to deal with. We're not asking for pity, but empathy, support, and understanding go a long way.

3. It is not something my child will “outgrow.” This definitely makes the top 10 list of things to never say to a parent of a child with SPD! SPD is not a “phase” nor is it something that will just fade away as H matures. He will learn how to manage his sensitivities and to adapt to situations that cause him anxiety. With continued sensory integration therapy, he’ll develop more body awareness, better self-regulation, and more flexibility.

Each year, he’ll grow and change. The way his SPD manifests when he’s six will be different from the way it manifests when he’s ten. And while his dad and I will make it our mission to ensure his continued growth and to help lessen the impact of his sensory challenges, SPD is not something he will someday “outgrow.”

4. A “tough love” approach will not lessen my child’s meltdowns. As parents of kids with SPD, we understand that at times it appears that our children are “brats,” “misbehaved,” “spoiled,” and “manipulative.” And we’re not saying they’re not...at times.

But, often when you see my son having a level 12 meltdown, it’s not because he’s a bratty, misbehaved, spoiled, manipulative child, it’s because he’s experiencing sensory overload- it’s loud, it’s crowded, I’m tired, the environment is unpredictable- which triggers a fight or flight response. Depending on the level of sensory overload, it can be quite intense and difficult to manage.

Think about the last time you felt overwhelmed. Maybe you didn’t sleep well the night before and you woke up to one of your kids having a fever. Later that morning, you found out that your routine pap smear came back abnormal. Then your husband called to let you know he had to work late. You snapped. You said something bitchy and abruptly got off the phone. On the verge of tears, you felt like you were about to completely fall apart.

At the peak of your meltdown, your husband called back. He angrily accused you of being rude, shamed you for not being more understanding of his work schedule, then hung up before you could explain yourself. Would this response shift you out of your feelings of overwhelm, making you feel calm and centered? In a word, No!

This type of approach won’t lessen my child’s meltdowns either. Shaming, punishing, and using “tough love” as a form of discipline when he’s falling apart will only exacerbate his behavior and make him feel worse. This is not to say that H doesn’t need boundaries and limits, he absolutely does. He also needs empathy, support, and understanding, just like we all do when we’re feeling dysregulated.

Next time you see a child falling apart, practice trading your judgments for empathy and, in the words of author Ian Maclaren, “Be kind, for everyone is fighting a hard battle.”

For more on an alternative to a “tough love” approach to discipline, Click Here.

5. I’m not being high-maintenance. Throughout H’s infancy and toddlerhood, I was a big-time stickler about his sleep schedule. This kid was not missing a nap, napping in the car instead of his crib, or staying up past his bedtime. Period. End of discussion. Nope, there was no being “flexible” and “go-with-the-flow” when it came to H’s sleep.

From an outsider’s perspective (including my husband’s), I was being “rigid,” “anal,” “overly anxious,” and “high-maintenance.” From my perspective, I was doing what was best for my son, a child who, since infancy, struggled to fall asleep, could not stay asleep for longer than two hours without waking up in hysterics, and had low muscle tone and low energy, making good sleep that much more important for him to stay regulated.

When my younger son, C, came along, things were different. Though he also has sensory processing challenges, his are much more mild and present in a completely different way than H’s. C had zero issues with sleep and guess what, neither did I! Car nap, no nap, up until 9pm? No problem!

The first time my husband and I left H for an overnight getaway, I wrote a 6-page word document detailing the instructions of his care for my parents, which may or may not have included things like, “Periodically talk to H about us being gone and remind him that Mommy and Daddy always come back.”

Ok, maybe that was a teensy weensy bit high-maintenance, but in my defense, he was still waking up every two hours, crying for hours on end, and having a lot of separation anxiety (cue the mom guilt). Again, from an outsider’s perspective I was being high-maintenance, but from my perspective I was doing whatever I could to ensure that H would stay regulated in our absence. And, just for the record, my parents were grateful for the play-by-play instructions...at least they said they were! Ha!

Look, having a child with an extra sensitive nervous system tends to make you extra sensitive to their needs, which can make you appear high-maintenance. Multiply this if you already were an extra sensitive person (me!). There’s a fine line and, admittedly, I do happen to err on the “overly anxious” side. But, you know what? I’m fine with it. If taking measures that others deem "a little extreme" helps my son stay as healthy and calm as possible, then I’m willing to be that mom.

If you’re the partner, parent, or friend of someone with a “type A” personality who has a child with SPD, understand that while they may cross that fine line at times, the measures they take and the strategies they use to help their child have less to do with them being high-maintenence and more to do with what they know to be effective in keeping their child regulated. And, hey, if it spares you from having to witness their child’s massive meltdown, more power to 'em, right?

Any way you slice it, this parenting thing is hard as hell and we parents, whether we have children with SPD or not, need your support. We need your curiosity, your empathy, and your willingness to listen. And sometimes, we just need a good, old-fashioned hug. Or a glass of wine. A glass of wine will do, too.

Are you a parent of a child or children with SPD? What do you wish other people knew? Are you a partner, parent, or friend of someone who has a child with SPD? Was this helpful? Leave a comment below, I’d love to hear from you.