“My son has been diagnosed with something called Sensory Processing Disorder.”
This is how so many conversations start when trying to explain my son’s needs and behavior to strangers. It can be an awkward conversation because, to so many on the outside looking in, my son doesn’t seem to have a “Disorder“. A lot of the time, what I know to be a manifestation of my son’s symptoms just look, especially to someone seeing them for the first time, like behavioral issues. So how do I explain?
Labels are tricky. Appearances are deceiving.
I’ve never felt comfortable claiming the label of “special needs” for my child.
I know families of children with real special needs. I know how hard each moment is, how uncertain the future is. I am in awe of the sacrifice, determination, and sheer audacity of those parents. They’re truly super heroes in my mind.
But if you remove the weighty meaning behind the words, “special needs” are exactly what my child has.
You see it might look like we’re running late again; but the reality is that he had a 30 minute meltdown on the stairs because he couldn’t handle transitioning to a different floor of our house.
I might look like a helicopter mom, controlling what he eats, scheduling out his day; but the reality is that it’s me who has to deal with three days of his terror and anger over everyday life if he has even one piece of red candy.
We might look like we have awesome toys; but the reality is they all have a therapeutic purpose.
I might look like a common housewife; but the reality is that I know the definitions of “proprioceptive”, “vestibular”, “executive function” and so many other sensory buzzwords that they’re as common to me as “playdate” and “laundry”.
It might look like a “typical” childhood behavior to you; but the reality is that it effects his ability to function.
I might look like a bad mom for forgetting to bring his snack again; but the reality is I remembered to bring his chewie, and that’s essential.
It might look like we’re just enjoying the playground or the pool; but the reality is that I’m challenging him to get extra sensory input to expand his ability to handle regular things every chance I can.
It might look like a tantrum; but the reality is that it’s a meltdown, and he desperately needs help to regain control.
I might look like I’m enjoying our large social gathering; but the reality is that I’m trying to imagine what all the noise and chaos feels like to my son, wondering what might set him off and how I can prevent it.
It might look like I’m exhausted, frazzled and on the edge of losing my cool, but the reality is I’m a mom of a child with sensory processing disorder.
The reality is my son is crazy smart and ridiculously stubborn. The reality is my son thinks in such a unique and creative way. The reality is my son is one of my best friends. The reality is my son is a blessing to our entire family.
Julie is a frazzled mom of three tornadoes. As a dorky second-generation homeschooler, she writes about learning and play, natural living, special needs parenting and matters of the heart. She serves an astounding God that radically saved her.
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Christina @There's Just One Mommy says
I’m there with you, momma!
I spend so much energy in the day trying to avoid situations that could cause a major melt down. We have reached the point where melt downs don’t happen often, but when they do? Epic. Holding him and trying to calm him down is a struggle now that he is bigger, but that hug is what he needs. I know to others it may seem like I’m being “too easy on him,” but in reality? I know how hard he has to work to hold it together all day.
Julie says
Sounds like we’re at the same stage! Hugs to YOU! 🙂
MOna says
what a wonderful post that explains our life exactly! You don’t want to label your child, but still so desperately need to have people understand how different your life is! Thank you!
Julie says
Thanks for commenting! It’s encouraging ME to know I’m not alone!
monica says
Hi!
My name is Monica and Im from Argentina. I have a 3 years daughter with SPD. Its really hard to find information about this in spanish, to find communitys or people in the same situation near us. Thanks God Im here and i just finished to read your post… and it semms like you describe my life as a mom. People always look at me like im a horrible mom but i dont want to shout the world MY DAUGHTER HAS A SPD. Its not her fault. Its just the way life is….
Now, you got a southamerica reader…. A HUGE HUG TO YOU!!!!
Julie says
Welcome Monica! SO glad to have you! I post a lot about SPD. I have a facebook page as well as a private group for SPD parents. We’d love to have you!
Krystal says
All I could do was cry as I read this post. This is exactly where i am at! My beautiful and so loving daughter has SPD and we are struggling to keep our home life a calm one.
Julie says
I’m sorry it’s so hard! Glad to have you here with us though! We mamas gotta stick together!
wendy says
I love this and love that you share the realities of what so many of us deal with each day. Thanks for being so open and honest!
Julie says
Thanks for joining me in the journey! 😉
Tabitha says
This makes me chuckle and cry. Because I get it.
I know every texture within 50 feet of us and which ones he will dart into traffic to touch.
Thankfully, he is less oral than he used to be, because he used to NEED to LICK every floor that we walked on, do you know how many different floorings are in your average store? A LOT! Why do they need to have carpet, and tile, and wood floors, and rugs, and anti fatigue mats, and runners, and anti slip mats, and grooves, and , and and!!!!. He would have a total meltdown if you wouldn’t let him lick the floor at every transition. So we had a LOT of meltdowns…floors are GROSS. (I was so jealous of the moms with children who they could trust to just walk near them. I literally carried my guy almost everywhere till he was about 5. I still have to watch him VERY closely, but he is getting better at managing his urges. Or, maybe he just figured out what he needed to from all those nasty floors.
Because this used to be a typical day running errands…
Yes, I know that isn’t “good” to carry them everywhere… Thank you for the stares, random lady at the grocery store. And the kind advice from the stranger at the bank. Yes He’s big, Yes, I have major muscles from hauling him everywhere. Yes, he really keeps me on my toes. Yes, he’s getting kinda big for that stroller. Yes, he CAN walk, see… OH CRAP!, Thank you for telling me my kid is (yet again) face planted in the carpet!
It’s funny in hind sight, but frustrating in the moment. I have adopted the phrase “It’s all part of the adventure!” It helps put things into perspective.
Julie says
Wow Tabitha, that is intense! We all do what we got to do and it sounds like you’re a great mom! I love your phrase! I’ll have to adopt it too!
AManda says
Thank you so much for this, it’s so nice to know your not alone on this ride. I feel it all the time the looks the “the do you allow that” it’s so hard to explain😔 Thank you 🙏🏻
Ambrica Jackson says
You are speaking my language to-the T! It is so important to have the support of other parents with sensory children and who just gets it. Such a breath of fresh air!❤