A Mother's Struggle
Late last year, a few days before Halloween to be exact, I followed my gut instinct on something that had been eating at my heart for quite a while. After a few months of internal struggle on how to proceed, I took our 4-year-old, Jackson, to see an occupational therapist for an evaluation of Sensory Processing Disorder.
I remember taking him to his new pediatrician (we had relocated to KY from MI) and expressing some concerns about his behavior. As Jack sat in the “spinny chair” and proceeded to go round and round with no sign of dizziness, the nurse practitioner told me: “I’m no occupational therapist, but he seems right on target for a happy, healthy four-year-old! But I can submit for an approval to your insurance if it would make you feel better?”
The old me maybe would’ve apprehensively said, “Okay…” and left it at that. But here’s the thing…that’s what I had been doing for ages already. And I had come to a point where those decisions were eating at me and I just finally had to know for sure. So I finally grew some balls and said that, yes, I would like a request for an occupational therapist to evaluate our son.
The approval came in rather quickly and we got him scheduled for the evaluation. Being proactive, I filled out a 5 page questionnaire online that was geared towards identifying behaviors in children with Sensory Processing Disorder (SPD). I remember feeling very alone because not many people around me felt the same way I did about his behavior, and I didn’t want to be “that mom” who jumped to conclusions about their children’s health over every little thing.
The day came and I printed out the completed questionnaire, packed Jack into the car and we headed downtown. I was nervous! When we finally found the building (at this point I had never been to that area of town), I looked in the rear view at my son and took a deep breathe. He was sucking on his fingers and looking back at me with a smile. “You ready, buddy?” “Uh…am I getting boo boos at the doctor?” “No shots today, baby! You get to play while mama talks to the doctor!” He seemed happy with that conclusion and took my hand as we walked across the parking lot.
After about an hour with the OT, she had came to the conclusion that he indeed scored high for sensory seeking behaviors. She had observed him playing while we talked, then she took him to the gym area while I filled out a similar questionnaire to the one that I had brought in. One thing during our talk that stuck out to me was when she asked if he had been an abnormal pregnancy or delivery, which he had.
I was induced with Jackson a few days after his due date because an NST (non-stress test) showed his heart rate was skyrocketing for no apparent reason. After hours of trying to labor on my own, spiking a fever that wouldn’t go down and his heart rate not normalizing during the attempted delivery, we were taken into emergency c-section. As a 9lb 8oz baby, he was basically stuck trying to move down the birth canal. What I didn’t know, and what the therapist was trying to gather information for, is that:
Children with SPD often had difficulties during labor and delivery. Conservatively estimated prenatal and birth problems are:
And further more, much of the difficulties we had when he was an infant can be linked to an SPD diagnosis, which I had no idea! Jack was mildly jaundiced in the early days and always craved touch as an infant. He loved to be held and slept on my chest or swaddled tightly in the bassinet next to our bed. He also seemed to instantly relax if his soft minky blanket was near his face where he could nuzzle into it, a behavior he still mimics with his determination to wear as much fleece and “soft” clothing as possible (without tags). Getting this kid to wear jeans is like pulling teeth.
I had endless nights of a colicky baby boy, where my tears would mingle with his as I bounced him around the living room in my arms by the light of muted infomercials. We spent a lot of the early days sleeping on the couch together rather than in bed (partly because our bed was too high for me to comfortably crawl into after my c-section, but also because he woke frequently and it was easier than keeping Will awake with all the commotion.) White noise-static was a saving grace for us from about birth to age 2. It was to the point where everyone who had prolonged exposure to him had the same app installed on our phones so we could quickly calm him down when he was unsettled.
Children with SPD appear to be at a greater risk for early childhood health problems. A recent study found:
This explains so much about our funny, silly, high-energy, stubborn and easily frustrated little love bug. And I feel like a weight has been lifted as the confirmation basically let me stop thinking, “He’s a boy! A TODDLER boy at that! This is normal!” — the things I would tell myself when deep down I knew it was something more. Heck, it’s what most everyone around me would say when I would try to find a way to point out that maybe, just maybe, there was something a little different about Jack. But mama just knows.
Prior to the pediatrician and OT evaluation and all the research and final diagnosis, I remember being back in Michigan at a friend’s house for the night before I was to head out to a work convention in Las Vegas. Earlier in the evening we had been chatting with another friend about all of our children (who were all roughly the same age), and the topic of “stimming” had come up in relation to Autism. That led to a literal name drop of Sensory Processing Disorder before the conversation took another turn as we sipped on our wine.
Hours later as I laid in the darkness of their spare room on an air mattress, the talk from earlier rang in my ears. As tired as I was, and knowing I had to catch a plane the next morning, I pulled out my phone and started Googling. And the more I read about SPD, the more I felt like they were talking about my Jack in many aspects. My heart beating fast, I was saving links to refer back to in the light of day. Something in the back of my mind was ignited and I just knew. I couldn’t yet explain it and I’m sure my morning babble over coffee the next morning to my friend was probably more than she bargained for. It was the moment when all my concerns, quieted fears and broken hearted moments came together to rationalize that I was indeed not crazy and it was time to find the answers.
With an SPD diagnosis, does this turn our world upside down or change how we live our lives? Not drastically, no. Luckily there are a lot of occupational therapy activities we can implement at home to help him learn to self regulate and satiate his need for constant motion/touch/input. Things as simple as deep pressure touch with a body brush, joint compression and jumping on a trampoline all provide immense relief and pleasure for Jackson. I feel very blessed to have this special boy as ours, and I know that things could be much more difficult than they are.
I’m glad I wasn’t crazy. I’m glad I followed my gut instincts. Now we have some tools to implement so we don’t have the emotional breakdowns and tantrums and frustration at every curve ball that’s thrown his way. Every day brings its own challenges, and I admit some days are way harder than others. But isn’t that what parenting is? Walking down a path of the unknown and just hoping that you’re instilling good in these little people who look to you for guidance?
For those who are interested in knowing more about it, Jackson specifically scored high in vestibular, oraland proprioception seeking behaviors. The website in those links is one I found that late night at my friend’s house while searching on my phone. You will often hear me describe him as a seeker. With SPD, there are typically seeking and avoiding behaviors. Some children have both, but typically lean towards one side or the other. Jack has a few avoiding behaviors, but they don’t consume him the way his seeking behaviors do.
I remember taking him to his new pediatrician (we had relocated to KY from MI) and expressing some concerns about his behavior. As Jack sat in the “spinny chair” and proceeded to go round and round with no sign of dizziness, the nurse practitioner told me: “I’m no occupational therapist, but he seems right on target for a happy, healthy four-year-old! But I can submit for an approval to your insurance if it would make you feel better?”
The old me maybe would’ve apprehensively said, “Okay…” and left it at that. But here’s the thing…that’s what I had been doing for ages already. And I had come to a point where those decisions were eating at me and I just finally had to know for sure. So I finally grew some balls and said that, yes, I would like a request for an occupational therapist to evaluate our son.
The approval came in rather quickly and we got him scheduled for the evaluation. Being proactive, I filled out a 5 page questionnaire online that was geared towards identifying behaviors in children with Sensory Processing Disorder (SPD). I remember feeling very alone because not many people around me felt the same way I did about his behavior, and I didn’t want to be “that mom” who jumped to conclusions about their children’s health over every little thing.
The day came and I printed out the completed questionnaire, packed Jack into the car and we headed downtown. I was nervous! When we finally found the building (at this point I had never been to that area of town), I looked in the rear view at my son and took a deep breathe. He was sucking on his fingers and looking back at me with a smile. “You ready, buddy?” “Uh…am I getting boo boos at the doctor?” “No shots today, baby! You get to play while mama talks to the doctor!” He seemed happy with that conclusion and took my hand as we walked across the parking lot.
After about an hour with the OT, she had came to the conclusion that he indeed scored high for sensory seeking behaviors. She had observed him playing while we talked, then she took him to the gym area while I filled out a similar questionnaire to the one that I had brought in. One thing during our talk that stuck out to me was when she asked if he had been an abnormal pregnancy or delivery, which he had.
I was induced with Jackson a few days after his due date because an NST (non-stress test) showed his heart rate was skyrocketing for no apparent reason. After hours of trying to labor on my own, spiking a fever that wouldn’t go down and his heart rate not normalizing during the attempted delivery, we were taken into emergency c-section. As a 9lb 8oz baby, he was basically stuck trying to move down the birth canal. What I didn’t know, and what the therapist was trying to gather information for, is that:
Children with SPD often had difficulties during labor and delivery. Conservatively estimated prenatal and birth problems are:
- 42% had complications during labor or delivery
- 32% delivered by assisted delivery methods
- 25% mothers had infections or illnesses during pregnancy
- 18% mothers had unusual stresses during pregnancy
- 13% were pre-term, < 37 weeks
- 5% had cord wrap/ prolapse at birth
– (May-Benson, Koomar, & Teasdale, 2006)
And further more, much of the difficulties we had when he was an infant can be linked to an SPD diagnosis, which I had no idea! Jack was mildly jaundiced in the early days and always craved touch as an infant. He loved to be held and slept on my chest or swaddled tightly in the bassinet next to our bed. He also seemed to instantly relax if his soft minky blanket was near his face where he could nuzzle into it, a behavior he still mimics with his determination to wear as much fleece and “soft” clothing as possible (without tags). Getting this kid to wear jeans is like pulling teeth.
I had endless nights of a colicky baby boy, where my tears would mingle with his as I bounced him around the living room in my arms by the light of muted infomercials. We spent a lot of the early days sleeping on the couch together rather than in bed (partly because our bed was too high for me to comfortably crawl into after my c-section, but also because he woke frequently and it was easier than keeping Will awake with all the commotion.) White noise-static was a saving grace for us from about birth to age 2. It was to the point where everyone who had prolonged exposure to him had the same app installed on our phones so we could quickly calm him down when he was unsettled.
Children with SPD appear to be at a greater risk for early childhood health problems. A recent study found:
- 62% had chronic ear infections (always been prone)
- 40% had allergies/ asthma
- 27% experienced serious injuries or illnesses
- 25% had jaundice at birth (he was jaundiced, but home treated)
- 20% had colic as infants (DEFINITELY this)
This explains so much about our funny, silly, high-energy, stubborn and easily frustrated little love bug. And I feel like a weight has been lifted as the confirmation basically let me stop thinking, “He’s a boy! A TODDLER boy at that! This is normal!” — the things I would tell myself when deep down I knew it was something more. Heck, it’s what most everyone around me would say when I would try to find a way to point out that maybe, just maybe, there was something a little different about Jack. But mama just knows.
Prior to the pediatrician and OT evaluation and all the research and final diagnosis, I remember being back in Michigan at a friend’s house for the night before I was to head out to a work convention in Las Vegas. Earlier in the evening we had been chatting with another friend about all of our children (who were all roughly the same age), and the topic of “stimming” had come up in relation to Autism. That led to a literal name drop of Sensory Processing Disorder before the conversation took another turn as we sipped on our wine.
Hours later as I laid in the darkness of their spare room on an air mattress, the talk from earlier rang in my ears. As tired as I was, and knowing I had to catch a plane the next morning, I pulled out my phone and started Googling. And the more I read about SPD, the more I felt like they were talking about my Jack in many aspects. My heart beating fast, I was saving links to refer back to in the light of day. Something in the back of my mind was ignited and I just knew. I couldn’t yet explain it and I’m sure my morning babble over coffee the next morning to my friend was probably more than she bargained for. It was the moment when all my concerns, quieted fears and broken hearted moments came together to rationalize that I was indeed not crazy and it was time to find the answers.
With an SPD diagnosis, does this turn our world upside down or change how we live our lives? Not drastically, no. Luckily there are a lot of occupational therapy activities we can implement at home to help him learn to self regulate and satiate his need for constant motion/touch/input. Things as simple as deep pressure touch with a body brush, joint compression and jumping on a trampoline all provide immense relief and pleasure for Jackson. I feel very blessed to have this special boy as ours, and I know that things could be much more difficult than they are.
I’m glad I wasn’t crazy. I’m glad I followed my gut instincts. Now we have some tools to implement so we don’t have the emotional breakdowns and tantrums and frustration at every curve ball that’s thrown his way. Every day brings its own challenges, and I admit some days are way harder than others. But isn’t that what parenting is? Walking down a path of the unknown and just hoping that you’re instilling good in these little people who look to you for guidance?
For those who are interested in knowing more about it, Jackson specifically scored high in vestibular, oraland proprioception seeking behaviors. The website in those links is one I found that late night at my friend’s house while searching on my phone. You will often hear me describe him as a seeker. With SPD, there are typically seeking and avoiding behaviors. Some children have both, but typically lean towards one side or the other. Jack has a few avoiding behaviors, but they don’t consume him the way his seeking behaviors do.