Everyday Matters because Every Day Matters
This story is one that is close to my heart, supported with much research, and extremely personal. While I am not a doctor, I have lived the journey of Sensory Processing Disorder (SPD) in the most intimate way when our son, Charlie (our only and miracle child) was diagnosed in Kindergarten. As an educator (and nerd), I research everything. Being informed in doctor’s appointments so that we are a team is key to me. I have been asked to share my knowledge at various events, with parent groups, and even with schools.
The Youmans’ family exposure to SPD began with Charlie’s pediatrician checking his toe-walking after his 3-year-old pre-school teacher at our church made a comment in his conference that she noticed Charlie never walked flat-footed—he always walked on his toes. As first-time parents, we thought, “Is that a big deal?” Ms. Sue just suggested that his toe-walking might need to be explored. We scheduled an appointment with our pediatrician. The decision was to watch and see if Charlie would outgrow this with some constant reminders to “go flat” and physical therapy/stretching of his Achilles.
At 5 years of age, it hurt for Charlie to walk and run. He could not put his feet flat. When asked to stand flat to be measured for his height, he couldn’t. We were sent to an orthopedic specialist at Children’s Healthcare of Atlanta and to more physical therapy. It was at this visit that things changed for our family. The physical therapist who became a part of our life for the next five years was working with Charlie on his evaluation visit came to us and said, “would you mind if I walk Charlie down to the occupation therapy part of our building to see if they can help me with his evaluation?” Of course, we gave our approval for whatever was needed to do what is best for our son. It didn’t take long before the physical therapist and the occupational therapist both called us into a conference room. “We believe that Charlie has a sensory processing disorder. He needs a sensory diet.” They proceeded to detail to us that the volume control on Charlie’s senses (all 7—not just the 5 we know) is broken. HUH? He needed occupational therapy, physical therapy, and counseling for coping strategies on how to deal with situations and people that would overwhelm his senses. Okay. That night, as with all others, we prayed for our son.
Sounds bothered Charlie—sense #1-check. Charlie was difficult to dress. I bought every sock in Walmart and Target. They all “felt funny” and if I thought about him wearing something with a design on the shirt, I could forget about it. All tags in clothing had to be removed. We were lucky to keep shoes on him. When we reflect back to his 3s, and 4s, he would instantly begin taking off his clothes as soon as he walked in the door. I’ll never forget later asking the occupational therapist talking to me about that when I mentioned it. She looked at me and said, “Feel your underwear.” Startled and blushing, I started to move my hand in “that” direction and she laughed. “No,” she said, “not with your hand.” She then explained that Charlie constantly felt his clothes, his socks, his underwear. People without SPD just take for granted the ability to “wear clothes.”
Touch—sense #2—check. Textures in food mattered. He craved crunchy foods. His weight could fluctuate. When his senses were overwhelmed, he walked on his toes and he wanted to feed that crunch. At occupational therapy, he had to work his mouth muscles by sucking yogurt through a straw. Charlie found his thumb when he was a week old. This became a soothing tool that also worked those muscles as well. Textures in food were a huge issue (like a lot of children have); many people have sensory issues in just one or two areas.
Taste—sense #3—check. We walked into a medical office building one day for an appointment and were heading down the hallway to Charlie’s allergist appointment. I opened the door for us to enter and before we walked in, Charlie took a sniff from behind me in the hallway and said, “The furniture smells funny.” I hadn’t noticed anything, but as we walked in it was obvious that redecorating had taken place and new furniture was present. Charlie and I had to stand in the hallway until they called him for his appointment. More examples of things like this occurred daily.
Smell—sense #4—check. Bright lighting, strobe lights, flashing lights—you name it, they all bothered Charlie. Once we had received his diagnosis, my husband, Chris and I would think of events that had happened prior and realize that his SPD is the mystery behind his odd or random behavior. When Charlie was small, he absolutely loved the Wiggles. The Youmans’ family could sing “Big Red Car” or “Fruit Salad” with the best of them (we still can). So, I bought tickets to see the Wiggles at the then Gwinnett Arena. Charlie was smiling and laughing and as soon as the lights went down, strobe lights came on, loud music began playing, and the master of ceremonies began introducing the show people would have thought that I was holding Charlie over scalding hot water. His screams were of those of a child in extreme pain. I walked him around the concourse, got him settled, and tried to re-enter and the screams began again. I texted Chris back at our seats that we had to leave. We were there all of five minutes—MAX.
Sight—sense #5—check! The other two senses that most do not know about are proprioception and balance. These two senses are how we move and have balance (obviously). Charlie was lacking in both. His fine motor skills were quite delayed and his balance was atrocious. Playing sports was difficult and physically painful. Well, he was academically and intellectually incredibly gifted and socially mature, he was lacking in those motor skills that allowed him to run, play and ride a bike like other kids.
Proprioception and balance—senses #6 & #7—check and check. Most who saw Charlie would have no idea that he was dealing with difficulties. In fact, as new parents, before we knew that the Sensory Processing Disorder was present, we, like most new parents discussing parenting styles, were struggling with discipline. Emotional meltdowns in public from too much sensory input brought disapproving stares from judgmental onlookers, and we wanted to prove that we were good disciplinarians. However, there came a time when my intuition would prompt a conversation with Chris that I felt like Charlie’s actions weren’t behavior or being insubordinate yet loss of emotional control. Once we had a diagnosis, we knew that our child had been dealing with more than most, and we wanted to know as much as we could.
Research began to show many things that shocked me as a mama and as an educator. Statistics such as 6 out of 10 children have sensory issues and that most get misdiagnosed as ADD/ADHD and put on medication that isn’t needed. It amazed me that in all of the educational psychology and special needs courses that I had taken in multiple advanced degrees in education, I had never heard of SPD, yet ADD and ADHD were as common as sweet tea in the South. Charlie’s teachers craved and appreciated any information and strategies that I could give them even asking if they could share with others. Parents were stopping me to ask me if I thought their child’s symptoms might be SPD. I learned that most autistic children have sensory processing issues, but that not all sensory kiddos are autistic. For a while, Charlie went through brushing of his body, joint compressions (each finger, toe, his ankles, his wrists, his shoulders, his knees, his hips—all 10 times each for 3-5 times per day. Massage and calming music were key for him; he wore a headset that had classical music for when the outside world was too much. Occupational therapists told us it would get better as he aged with intermittent counseling sessions for strategies to handle times that could become overwhelming. Charlie is doing great. He has never had an IEP or 504. We are thankful that he has never been medicated for anything as a result of a misdiagnosis. He thrives as a gifted student who asked Jesus to live in his heart when he was 5 years old. His moral compass is incredibly strong, and he loves all things that 12-year-old boys do (especially his mama).
As we began this journey, some simple lists that made me laugh about Sensory Processing Disorder kiddos outlined common things that they are known for or do. Below are some of those items. May this list help you as you encounter a child in your family, be it your own child or grandchild, but also, may this list remind you before you quickly shoot a mother or father a snarky glance when their child isn’t behaving the way you’d expect. Rather, extend grace, kindness, or simply silently offer a prayer for that parent and child. Disorders, disease, and illness come in all shapes, sizes, and forms, so remember that before passing judgment because everyday matters like these are what make every day matter.
This list was based on how an SPD kiddo is in school. I’ll never forget how many of these applied to Charlie. His teacher just laughed when I shared this list. (List courtesy of hartleysboys.blogspot.com)
You Know You’re Teaching an SPD Kiddo When... (a list for teachers and all of us who watch our kids struggle in school)
1. He chews his pencil, both the eraser and the lead, all day long.
2. He can’t seem to stay seated for over 30 seconds.
3. He constantly wants to get a “drink” but really he is just playing in the sink.
4. During circle time he sits virtually on top of the kid next to him
5. You have to remind him that he cannot touch the hair of the girl next to him—no matter how cool it looks.
6. You implement Handwriting Without Tears program—because you can’t read anything he writes.
7. He wears the same pair of “soft” sweatpants every single day to school.
8. He gets out of his chair to ask you a thousand questions all day long.
9. He talks through story time no matter how many times you tell him to just listen.
10. At recess, he climbs on the very TIP TOP of the jungle gym, where he is NOT allowed.
11. He hides under his table during the fire drills, crying with his ears covered.
12. He lit up when he saw the ball pit in the resource room.
13. He refuses to eat in the cafeteria on “Sloppy Joe Day” because it smells awful.
14. The collar, the sleeves, and a strange place directly in the center of his shirt are all dripping with spit from being chewed on all day.
15. He got kicked off the bus within the first 3 weeks of school because he was being “mean” to another student who was “in his spot”.
16. He covers his ears when you raise your voice to get the children’s attention.
17. He complained that the tag in his shirt was bothering him, but when you offered to cut it out you realized there is only a tiny fragment of the tag left from the previous attempt at removal.
18. During art, he spent most of his time trying to glue his hands together instead of completing the project.
19. He is very proud of being the first kid in the entire school to do the monkey bars backward.
20. He complains that it is too loud for him to concentrate when you don’t hear a thing.
21. He simply cannot stop himself from using the “off limits” stapler on the teacher’s desk.
22. The first week of school he spends asking you a thousand questions about each thing you have hanging on the classroom walls.
23. He cringes when you touch him—and if he is upset—touching him just makes it worse.
24. He can’t keep his hands to himself when standing in line; he is pushing or bumping the entire time.
25. He spends his entire recess spinning in circles.
26. He is a little TOO enthusiastic banging the drum during music class.
27. He always wants to be the “door opener” or “lunch wagon puller” EVERY DAY.
28. He can repeat conversations you had with another teacher in the hallway.
29. You find things in his desk that don’t belong there; teacher scissors, bingo markers, beads, crayons and other assorted small fun things.
30. The bus ride to school seems to wind him UP UP UP— (and so does the bus ride home).