The Diagnosis: Our Journey To Sensory Processing Disorder
So, I have been asked many time how we came about a SPD diagnosis. The typical question is ” Did you always know?” And simply put, YES. We always knew there was something different about Declan. From the time he was born we have been on a roller coaster ride and SPD has been along with us. But only recently did we have a name for it. Our diagnosis came a couple months after his fourth birthday. But believe me we knew long before that.
I want to preface with the idea of hindsight being 20/20. At this juncture I can pinpoint and articulate what Declan’s behaviors were back then… I could not have done that at the time. It is only with the benefit of a diagnosis and education that I am able to correctly label and speak to his signs and symptoms. In the moment, I was not able to tell you that his spinning obsession was due to his vestubular system being out of whack or that the reason he loves bold food is due to a need for additional stimuli in his gustatory system.
In the beginning…
If you have been following me for a while you know that we had an eventful first year with Declan; to say the least. He was delivered by emergency c-section, he spent 4 weeks in the NICU, was in and out of the hospital with multiple surgeries for the first 11 months and he was on oxygen until he was one. Then life cooled down a bit and leveled out; for a bit anyways. But despite the decrease in hospital stays and need for medical care Declan continued to exhibit signs of something “sensory”.
We really started to notice it as he became more mobile, started walking and eventually started talking. One of the first signs, for us, was his desire to spin around. At the park he would spend all his time in the spinner just going around and around. Around the age of about 18 months we started to really see this as a crucial piece. Around this same time we would notice him walking into walls, rubbing textured walls for long periods of time and we could not explain his love for bold and spicy foods (think ginger kumbucha and whole onions).
From birth Declan has been an overreacter (my husband says that is genetic…). When he was a baby he would cry for hours; I actually mean HOURS. We have learned that part of that was due to some pain and part was due to the need for sensory stimulation. In fact, one of the most consistent ways Declan got sensory stimuli (prior to diagnosis and therapy) was through massive melt downs. In hindsight, I know now that a tantrum provides him with all the sensory components he was seeking and it was the only way he knew how to make his body feel better. The crying was an auditory stimuli, the getting worked up was a proprioceptive stimuli as it helped him feel his body in space and time and the repetition of crying was meeting his vestibular stimuli by creating a sense of balance for him.
And then…
When Declan turned three we began to see a lot more sensory seeking behavior. More noticeable and definable. He would continue to spin, any chance he was given, and he continued to have MASSIVE meltdowns. But these were only really happening at home- not at school. So we worked on parenting strategies and discipline… and that didn’t work- DUH.
We began to notice him having difficulties in situations that required simple motor planning. He was unable to complete/plan simple sequences of movements. And he began wanting to rock and jump all the time. He continuously wanted to be held and carried. The hard hugs and heavy sense of another person was comforting to him.
The tantrums continued and started to really increase. He was becoming unmanageable. And was putting EVERYTHING in his mouth EXCEPT FOOD. And that was what sent us into the doctor.
The Food Problem…
As I mentioned Declan was born under high intense circumstances and has never been a good eater. He had a feeding tube for almost a year as he was on the verge of failure to thrive. Eating has always been at the forefront of our lives- what he does and more importantly what he doesn’t eat. By his fourth birthday he was back to skin and bones, his BMI was plummeting and we were nervous. Our doctor finally heard us and sent us for a full feeding evaluation.
It was the best thing that happened.
During his evaluation for feeding and growth issues it was documented and obvious that Declan was presenting with global sensory concerns. BAM, there it was. Someone beside my husband and I finally saw what we had seen since birth. While we did qualify and began feeding therapy we also got sent to the top of the list for a full sensory evaluation. Both Brendan and I felt validated and excited about what was to come.
The Evaluation and The Diagnosis 
A month or two after our feeding evaluation we had our sensory evaluation. Upon completion of both the parent questionnaire and Declan’s portion we were presented with the report and as we knew he has sensory needs. Declan’s main areas of concern are his proprioceptive (sense of body position), vestibular (sense of balance) and gustatory (sense of taste) systems. When we received this information we were elated as it offered HUGE affirmation to our suspicions. We were not, in fact, over reacting or putting undue labels on him (as some people suspected).
The things we were and continue to struggle with are real. Our son has sensory processing disorder. Since the diagnosis we have started occupational therapy, continued with food therapy and began to change our lives. Each day we are seeing more and more improvements in Declan’s sensory system. And we are learning how to meet his needs.
We are now very aware and becoming more educated to the fact that Declan is a sensory seeker. He needs, craves and seeks stimuli to regulate his sensory systems. If you are parent who may suspect sensory do not feel badly that you probably can’t name nor define exactly what is going on. It has taken a four and half years, a diagnosis and a lot of education for us to be able to speak to his needs. This journey is a long one but it is full of learning. Each step we take together with Declan we see progress. Step by step.
With Love,
Looking for additional resources for sensory processing disorder??
I have a free resources library that I created for my son and I am sharing it. Click HERE it’s FREE!!!