Part 2: Evaluation & Treatment … Our Family’s Personal Journey with Sensory Processing Disorder (SPD)
Post Contributed By: Amy Svensson M.A., CCC-SLP
It has taken me way too long to write Part 2 of this blog series (Part 1). It truly is not that I have not had the time, but just that whenever I would sit down and try to write it I became overwhelmed. Thinking back to those early diagnosis days took my mind and heart to all the stones being unturned at one time. It was a lot to digest as parents. The evaluation and treatment journey is one of those that I look back on thinking, “How did we manage?” “How in the world did we do it?” The only answer I can come up with is, we just did because it was for our child. It was our commitment to her since the day we knew she was growing inside of me… we will do everything we can to make her feel safe, happy, healthy and loved – ALWAYS.Step one was making the appointment for the Occupational Therapy evaluation. Thankfully we were able to get an appointment within 2 weeks. Filling out the sensory profile was absolutely EYE OPENING! Again, kicking myself because I did not see some of these behaviors as ‘red flags’ years prior, I trudged through all the questions. Darn Mother Guilt, something else that started the moment I knew I was going to be a mom. The findings presented our daughter having a diagnosis of Sensory Processing Disorder of the Sensory Modulation Over-Responsivity Type (there are numerous combinations SPD can present itself). Starting the following week, therapy would begin. Our daughter’s sessions were weekly lasting 50 minutes. This meant coordinating her 1/2-day morning Kindergarten with my son’s much-needed afternoon nap. In the process we also got our daughter signed up for gymnastics to assist with movement and core strength and balance.
A few weeks into OT, our daughter’s therapist made the recommendation to have our daughter’s visual perceptual skills assessed. Here we go, another stone to turn over. Immediately I contacted a pediatric opthalmologist who was recommended to us. Sure enough, our daughter was diagnosed with optic conversion insufficiency. My Mother Gut told me this would be the case because she always sat close to things, would watch t.v. with her head turned to the side, and when she read books, she would hold the book very close. With this diagnosis meant nightly ‘pencil push-ups.’ Of course our daughter resisted because who wants to watch a pencil come to her nose over and over again. We had to get creative and get food involved. Since we do not eat Fruit Loops on a regular basis in our house we thought this would be highly motivating. One of us would have our daughter watch the Fruit Loop come to her nose then hold for the prescribed # of seconds. She got to eat all 10 Fruit Loops after she finished. Phew! We did that nightly for a couple of months then headed back to the eye doctor. Much improvement, but another stone was recommended to be turned over due to Ella’s reluctance to separate herself from me that day (and always when we had medical appointments), her noticeable anxiety, and refusal to participate/follow the instructions. She also became agitated. The assistant started talking about her grand-daughter having ADHD and was pretty close to diagnosing our then 6 year-old (although she did not have the credentials to do so). SIGH! Apparently this woman did not see the sweat running down my face, my infant son crying in his carrier, and me trying to calm both my young children down at the same time. She just kept running her mouth telling me all the red flags she was seeing; knowing that my daughter had the SPD diagnosis which can also align with ADHD and in fact that is the diagnosis code used for SPD since there is no separate code yet for SPD. All I was hearing at the moment was a bunch of blah, blah, blah and wishing instead she would be more empathetic and try to help me gather my things and get OUT OF THERE! I walked out of that follow-up appointment with the business card for a neuropsychologist that she shoved into my diaper bag.
I stared at that business card when I got home. So not to miss anything and just in case she was right, the next day I contacted the neuropsychologist to get an appointment scheduled. Given the high demand of this particular neuropsychologist, my husband and I re-arranged everything to make her 1st available appointment work, 2 months later. In the meantime, OT continued and progress was being made. Our daughter loved telling us about the ‘stretchy fabric’ and about getting higher on the slide. Thanks to the visual perceptual piece improving along with the sensory regulation, she was making progress every day.
The neuropsychological piece to the puzzle was a 4-session process. The first being my husband and I meeting with the psychologist to obtain a thorough case history and for her to learn about our family dynamics. Following this session were 2 separate 3-hour testing sessions where we dropped our daughter off and the actual standardized testing took place. Finally, once that was completed, the psychologist sat down with my husband and I again to discuss the findings.
I remember during our very first appointment when the neuropsychologist asked us why we felt our daughter needed the full neuropsychological assessment done. I vividly remember her eye roll, shrugged shoulders, and big sigh when I mentioned that our daughter had recently been diagnosed with SPD. Here we are with a very experienced neuropsychologist who had been practicing well over 30 years giving us a big ‘ole shut-down mentioning a very new diagnosis to the medical field. I knew at that point we just had to push on, let her do her testing and go from there. There was no convincing this woman that a child could have SPD and just that.
Our final appointment came and we sat back down with the neuropsychologist to discuss the results. My husband and I sunk into the couch and I remember how nervous I was. Before the results were presented, the first question I asked was “Does our daughter have Autism?” Again, being a speech-language pathologist I had that on my brain. She immediately said no because our daughter was very engaging, social, and had excellent language skills. I think I forgot to mention that our daughter is also a ‘toe-walker.’ I read SO much about the toe walking and it just made me more confused on what to think. I really never thought anything of it until I started reading about SPD. I did not think about it simply because my Aunt is a toe-walker and I was a toe-walker. I was relieved to learn that the psychologist did not feel testing and observations warranted an ‘Autistic’ diagnosis. Over some time and journaling, we realized that our daughter’s toe-walking became much worse if she was highly anxious (e.g., new environment, in a home with all hardwood flooring, with unfamiliar people). It seemed she was doing it to seek sensory input. It was one of her ways to self-regulate. In the end, our daughter’s testing came back to read: “Very Superior to Average verbal and non-verbal intelligence. A mild ADHD was verified, making it appropriate to determine (our daughter’s) response to various classroom accommodations.”
We walked out of that appointment thinking, ‘Now what?’ We took these findings to our daughter’s school and her OT for their review. We tucked the report away. We did not seek school-based services other than just made her educational team aware of the findings. We were not convinced that our daughter had ADHD or that it was her primary diagnosis. We opted to continue with our weekly private OT sessions and during the summer bumped up to 2x per week. To hit the social component, I sought out a fellow SLP to conduct private speech- language therapy sessions targeting the social pragmatic piece. In conjunction to the OT and SLP services, we worked with a private Physical Therapist (PT) for 2 months during the summer to work on increasing flexibility, balance, and diminish the toe-walking. To assist with the therapies we had in place and our fabulous team of professionals, we made sure to involve our daughter in activities and camps that would promote carry-over and added practice of new skills in daily life. Our daughter came to love ballet, tap, gymnastics, swimming, and horseback riding; none of it competitive, but simply for pure joy, balance, and natural self-regulation.
For 2 years we did the private therapies… the schedule juggling. My husband’s work schedule was insane (with business travel thrown into the mix) and we were in the middle of purchasing the practice. On top of that, we had our infant son in tow. There was so much driving back and forth to appointments and follow-up medical appointments ~ none of which were close to home so to get the best services we could from the most reputable specialists. We were so thankful when our daughter had her last eye appointment (40 miles away – we sought out a new pediatric opthalmologist) because we, and mostly her, were diligent to get that component corrected right away.
This journey has made me not only a much more empathetic person, but therapist too. When I see these moms come into the clinic without a coat on yet it is so cold outside, but their children are all bundled up OR when a dad comes in 10 minutes late with a diaper bag hanging off his shoulder holding an infant carrier (baby is crying) and has a toddler in tow OR when moms come in with spit-up on their shoulder holding a sleeping baby pushing a stroller that the baby will not settle in OR when mom/dad races in 15 minutes late because a work meeting ran over and they got stuck in traffic, I welcome them with a smile, listening ear, & a compassionate heart because I, too, was that parent just trying to get there.
“How did we manage? How in the world did we do it?” … We did it out of love.