Some days I feel defeated.
My son has sensory processing disorder, and adhd.
It feels like it takes over 90% of my life. A lot of the time I feel absolutely defeated. I constantly worry if he’s getting too much sensory input, or not enough. If he will seek sensory, or go into sensory overload. Will things be too loud for him? Will lights bother him? Will he freak out over textures of food, paper, and objects?
First let me say we have overcome so much. MADDOX has overcome so much. He’s strong, determined, beyond smart, and amazing.
But I won’t lie, some days are hard. Really hard.
When Maddox was little we thought he had silly little quirks. He started speaking full sentences at 10 months old, so we knew he was extremely bright. So hey smart people are quirky right?! He knew his alphabet, shapes, and colors by 1 1/2. He could verbalize anything and everything to us. His quirks were different though, I could just tell something was different. Touching his hair was like there was a murder happening. He hated allllll food. Everything made him gag. He hated the feeling of things. He constantly covered his ears because anything and everything was too loud for him. Warm to us, is scolding hot for him. He couldn’t be alone ever, he had severe separation anxiety. The list could go on and on. When preschool started was when we really noticed differences, his teacher noticed too. We had already been in occupational therapy for the last year for Sensory processing disorder, but we decided to have him psychologically evaluated at age 5 1/2.
At 5 1/2 we found out his iq was 140. He’s brilliant. We also found out 100% he has sensory processing disorder. Which duh we knew 😉
Over the years his SPD has peaked. It’s constantly changing. Let me explain what sensory processing disorder is.
“Sensory processing (originally called “sensory integration dysfunction” or SID) refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a sandwich, riding a bicycle, or reading a book, your successful completion of the activity requires accurate processing of sensation.
Sensory Processing Disorder (SPD), exists when sensory signals are either not detected or don’t get organized into appropriate responses. Pioneering occupational therapist, educational psychologist, and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks.”
“Symptoms of Sensory Processing Disorder, like those of most disorders, occur within a broad spectrum of severity. While most of us have occasional difficulties processing sensory information, for children, adolescents, and adults with SPD, these difficulties are chronic, and they can significantly disrupt everyday life.”
So for Maddox these are some of his main spd “symptoms”
He chews, a lot. If he’s in overload, if he’s seeking, if he’s worried, if he’s having anxiety from SPD. When you have spd you worry a lot, you don’t know what will happen next that will make you feel uneasy. He would come home with bite marks on his arms, or chewed up Hair. What really helps him is chewy necklaces. I highly highly suggest them. Search amazon and there’s all types of cute ones! We have a collection 😉
He wiggles a lot. A LOOOOOOT. His body is in constant motion. So when doing work something that helps him is his weighted blanket. An angel gifted us one, they’re pretty pricey, but you can google and find cute ones!,
A main area of pain for him is his hair. He refuses to cut it, and he hates brushing it of course. For him it’s extreme pain. Lots and lots of conditioner and a wet brush, and LOTS OF PATIENCE. ( which is difficult with a kid screaming bloody murder ).
Recently we just got a Schkidule visual schedule! Maddox is really visual, and if he sees in order what he has to do he has no reason to worry. He really enjoys that independence and knowing he’s doing the right thing.
Also, lots of therapy! Don’t be ashamed to ask, and get help. Maddox has been in occupational therapy since he was 4. We absolutely adore his therapist! She is a phone call away, and helps me so much. I truly appreciate her, and everything she does to help my child.
So really we totally all have sensory quirks! For instance, chewing irks me. The noise, it freaks me out. Socks feel funny on my feet. Little things like that.
Children and adults who have sensory processing disorder, it’s more than that. It’s the everyday world, and the normalcy we go through, that irks them.
I am so thankful Maddox can hold it together in a lot of situations. He is old enough now to verbalize to me what’s bothering him. I have given him the tools to not be ashamed, but to self advocate always. There’s so many tools out there now, to help children ( and adults ) with spd. I feel like it’s my calling, and my job to advocate for those who can’t. To help those who feel helpless. We’ve been going through this his whole life, and there’s days I still feel helpless. I feel like we have regressed on certain days even with all the therapy. Then there’s days where I’m so beyond proud because I see how far he’s gotten in other areas.
Always be your child’s advocate. We got very lucky this year to have a teacher who saw how advanced he is, but how much SPD can hold you back in certain things. Have your child’s teacher make a sensory area for them to have breaks. There’s SO much sensory input at school. All the kids, the groups, the noise, the bright lights, and so on. Make sure your child gets on a 504 plan, and you advocate for their rights and needs.
I’ve never met a cooler kid than Maddox. He doesn’t care what anyone thinks of him, and he loves who he is. He wants people to understand more, and it’s our job to help everyone understand. He’s truly the biggest super hero in my life.
These kids with spd and any “disorder” are so beyond special. Their quirks, make them unique. They have real super powers, get to know them. Advocate for them. Educate yourself for them.
I’m sure this post is all over the place, it’s something to close to my heart, and extremely emotional.
I’d really love to answer every and all questions!