A father and mother’s journey with their son who has sensory processing disorder:
“My SPD Journey as a Dad…
I am a blessed father of three young children, ages 4 and 1 (boy\girl twins). My oldest son was diagnosed with Sensory Processing Disorder shortly after this third birthday. Ever since learning this information, my family has been on a journey filled with ups and downs, good days and bad days coupled and a lot of joy and tears. Through research and conversations with our pediatrician and Occupational Therapist, we learned a great deal about the complexities of SPD. Although there are excellent resources available that provide education on SPD, it’s been difficult locating information on the emotional aspects. My goal in writing this letter is to share my family’s journey and provide some perspective to other parents (perhaps at the beginning of their journey) into some of the feelings associated with parenting a child with SPD. This is just one father’s perspective. It is not my intention to come across as someone who is giving advice. Every child is unique and so is the path each family takes. My hope is that anyone who reads this letter and is in a similar position will know that they are not alone in how they feel.
Learning that my son had SPD was difficult, perplexing, frightening, and, in many ways, surprising. Even though my wife and I knew in our hearts he was struggling and suspected he was delayed in certain areas, I wasn’t prepared to accept the news. Instead of tackling the issue head-on, I went into a period of intense denial. I remember thinking, “he’ll be fine; he’s only 3 after all.” It was very confusing. He had his good days and bad days and he was still just a toddler. What was also puzzling was that his teachers and pediatrician thought he was doing well and felt strongly that he would figure things out “in his own time.” I really struggled to accept what was happening. It’s painful to admit but I felt some embarrassment, shame and anger regarding my son’s diagnosis. Deep down I felt it was my fault and that his struggles reflected on me as a parent. In some ways I was mourning a loss too; a loss of what exactly I’m not certain. I went to a dark place thinking that my dreams of future “father\son” moments (playing ball, riding bikes, attending sporting events \ concerts, playing musical instruments – things I treasured as a kid) were lost forever. Having these feelings made me feel selfish, guilty, scared and downright gloomy. My pity-party was in full swing.
Getting familiar with SPD and all of terms, such as “vestibular”, “proprioceptive”, “tactile”, “auditory defensiveness”, “dysregulation”, “social thinking”, “IEP”, “special needs”, “Therapeutic Listening” was also felt intimidating; so much so that I continued to bury my head in the sand. My wife on the other hand dove in headfirst reading everything she could on SPD and related topics. Despite this, I continued to be resistant towards treatment. In my mind, my son was going to be OK; he just needed more time to work through certain issues. For me, starting treatment meant I had to admit there were problems and that angered me. “Why is this happening?”, “Is this real?” are thoughts I had often. I also thought I could “fix” it by working more with my son on certain things.
Thanks to my wife’s persistence we eventually sought out treatment. Watching my son struggle through his evaluation was excruciating, eye-opening and inspiring all at the same time. Although he struggled with many of the tasks, he never gave up. He tried so hard, got to the finish line and really held it together. I was never more proud of him as I was on that day. This was a turning point for me. I thought, “If my three-year-old boy is going to work that hard, I need to do the same.” Two weeks after the evaluation, we met with Chantel to discuss the results of his evaluation, treatment plan and associated goals. There it was, in black-and-white – all of the issues my son was facing. It was strange. Yes, I knew we had real issues to contend with but seeing them listed in a report and discussing treatment was something different. I was hopeful yet skeptical that treatment would help my son. Once we started treatment (twice-weekly sessions), my mind quickly changed. Almost instantly, Chantel connected with my son and we began seeing progress in my son’s physical strength, confidence and general demeanor. He was starting to become more social and seemed to have less anxiety about daily life.
I was able to sit in on many of his therapy sessions and was amazed at the relationship Chantel had developed with my son. I was also extremely impressed with the creativity and flexibility in which the sessions were designed and executed. Additionally, the time Chantel took to explain her approach (in-session) was extremely helpful. Many times we were unsure why she was having him do certain things, such as spinning around in a tub of rice! My son began to make progress in many areas which allowed us to go down to one session per week. At this point, we began to work on having my son learn to peddle a tricycle. After a year of trying (and watching other dads succeed with their similarly-aged kids), Chantel was able to get him to successfully peddle a tricycle in half of a session! My first thought was “hooray!” which was then immediately followed by “why couldn’t I ever teach him to do this?” Teaching your kid to ride a bike is a “daddy thing” (or so I thought) and honestly, I was disappointed I wasn’t able to succeed. It seems selfish but this was something that was engrained in my psyche so it was difficult for me to overcome.
Despite the momentum that had developed as a result of his participation in Occupational Therapy, my son still struggled day-to-day. One day, his mood was great – he was confident in completing daily tasks, was amenable to trying new things and was able to tolerate playing alongside other kids at the park or school. Despite executing the same routine the next day, meltdowns would occur over seemingly minor events. This was confusing and very disheartening. My wife and I put in great effort to create a calming home environment while maintaining a strict schedule; however, some days, no matter how hard we tried, he just couldn’t cope. When we discussed these challenges with Chantel, she helped us implement new strategies at home to help keep him regulated. Having someone there not only to listen and acknowledge the difficulties of our situation but to also brainstorm on ways to help was invaluable. Chantel also helped us realize that, with SPD, you will have good days and bad days. “It’s roller-coaster ride” I remember her saying one time. Indeed – one day we were thrilled because my son conquered something difficult and the next day (or even the next hour) we were managing an outburst because a loud car drove by or someone touched him unexpectedly. These ups and downs are very difficult to handle. What has helped me manage my own emotions through the tough times has been to
- Let myself off the hook and stop judging my feelings. It’s OK to feel frustrated, angry, sad, etc and that struggles with my self-confidence as a parent is part of the journey. Despite making great progress over the past year, I continue to feel overwhelmed at times (especially on tough days).
- Know that my son is trying his absolute best but is unable to regulate himself in many situations.
- Acknowledge that a bad or good day is just that – and that tomorrow is a new day.
- Accept that I will get it wrong sometimes. Trial-and-error is a big part of this roller-coaster ride.
- Accept that the same thing worked one day won’t work the next. Routines and schedules have been successful for my family but have also been the cause of our downfall on many days.
- Understand that there is no “cure” and that he \ we will always have sensory-related issues to contend with. Constant vigilance and monitoring of his temperament will always be required.
- Unconditionally accept SPD as a way of life for our son and our entire family.
- Acknowledge that others (family and friends) may not ever understand what we’re dealing with. My wife and I unfortunately have experienced disapproval and judgment of our son’s behavior and our handling of it. “We’re babying him…” or “he’s spoiled…” are comments we have received.
- Know that no matter what, my son will find his own little spot in the world. He may not be the baseball player (or even participate in that sport) I dreamed of but, with my support, he will find something he loves and will succeed.
- Know that other parents who don’t have children with SPD also have their own parenting challenges. This perspective helps me greatly because it has been difficult seeing images of a friend’s child (on social media) score a goal in soccer (a sport I love but not recommended for sensory kids), learn how to swim or do other things which are difficult for my son.
- Let go of “learned rules” in terms of behavior. Life for SPD families is just different. Jumping on the bed, stomping around the house in boots, “jumping breaks” at dinner are commonplace and encouraged in our house (and that is OK!)
- Communicate with and support my wife at all times. Much of the pressure falls on her in terms of my son’s treatment and day-to-day temperament. Things are typically at their best when we are on the same page and feel that we are both doing our best.
Our situation and my feelings about it continue to be a work in progress. Due to a change in my job, my family and I have relocated out of state. The most difficult part of moving was transitioning away from Chantel. Looking back, I realize we absolutely lucked out in finding a great clinic and an Occupational Therapist who “just got” our son and was able to connect with him immediately. Unfortunately, all the changes that the move entailed made the transition difficult for our son and consequently, he took a few steps back. That being said, things have started to turn around over the past month. Our son has started making friends (and attends play dates), is currently attending summer camp and will hopefully be starting swimming lessons later this summer! Next September he will be in pre-K, going to school 5 days a week. I am extremely proud but I know full-well that our SPD journey will continue.”
“A mother’s journey with SPD
My son was diagnosed with Sensory Processing Disorder at three years of age. I wanted to share his story with the hope that it will provide support to families seeking treatment. Long before seeking an evaluation, my motherly instincts were whispering. It was very difficult to get a clear picture because he was a toddler and had the typical good and bad days. Also, some of the more challenging behaviors he exhibited could be explained as something he would outgrow. It’s “just a phase” is something we heard a lot from well-meaning friends, family and teachers. The fact that he had met all of his developmental milestones and had such a deep vocabulary, I just hoped this would hold true.
It was after a trip to Disneyland on his third birthday that we finally decided to seek treatment for our son. The day was enjoyable; however, it ended dramatically following what can only be described as a “nuclear meltdown” during the fireworks show. The booming sounds and bright lights of the show completely overwhelmed him. We were trapped in a large crowd near the castle and could only hug him tightly as he kicked, screamed and cried his little heart out. I thought those fireworks would never end. That was the defining moment. My husband and I looked at each other and we knew that something just wasn’t right.
At his three year check up we mentioned our concerns to his pediatrician. Our concerns were shrugged off and we were reassured that he would grow up just fine. We were also advised that we should not “give into his tantrums.” Unfortunately, many of the issues he was supposed to outgrow (noise sensitivity, texture aversions, motor planning difficulties, social anxiety, etc) became more intense and began impacting the quality of his life. Going outside incited meltdowns, using the icemaker brought him to tears, barking dogs, loud trucks or airplanes brought on panic, cries from his younger siblings caused him to scream. In social settings, Ben would cling to me, stare at his feet and revert to baby-talk. Cooking was also difficult as the sizzle of a sauté pan was too overwhelming. I stopped using the blow dryer and only ran the vacuum when he was out of the house. Potty training, mealtimes, and getting him dressed were daily challenges that often resulted in tears. Ben was not happy. I missed his sweet smile and perfect little laugh.
Finally, I made a chart of every meltdown and what preceded each one. I made an appointment with the other pediatrician in our practice. She reviewed all my notes and wrote a referral to Occupational and Physical Therapy for sensory and gross motor concerns. I was so relieved and terrified all at once. I began reading anything I could get my hands on and quickly realized I had a big learning curve to overcome to really understand SPD.
The hardest part of the journey with Sensory Processing Disorder was to finally listen to my instincts and speak up for my son despite everyone else’s opinion. The easiest part was selecting a clinic. Hindsight now tells me how extremely lucky we were to have found Chantel. Some clinics we contacted didn’t take the time to return our messages while others just wanted our insurance information in order to book an appointment. When my husband and I contacted Chantel, we received an immediate response. She spent over an hour on the phone listening to our concerns and took the time to educate us on the basics of SPD. We were extremely impressed with her knowledge and the delicate manner in which she discussed our situation. It was if she had always known our son by only discussing a few of his symptoms. We felt comfortable immediately.
Shortly thereafter, Chantel performed an overall evaluation of our son and two weeks later, we met to discuss the results and treatment options. The evaluation revealed that he has significant difficulty with sensory modulation and discrimination, especially with the auditory, tactile, and vestibular systems. I distinctly remember sitting in the meeting room, there was a box of tissues sitting on the table. I had no tears that day, just a million questions swimming around my head. The biggest two questions were… 1) How can we tell the difference between SPD and behavior? 2) When will he get better? The answers that we have discovered are… 1) SPD and behavior are one and the same. 2) We accept our son unconditionally for who he is now and who he will become. SPD is just one part of my son. Receiving therapy will help him make better sense of the world and give him tools to find joy in life.
It was recommended that our son begin twice-weekly therapy sessions for six months. In addition, it was recommended to begin Therapeutic Listening, a modulated music program, twice-daily for 6 months. We began treatment right away and saw immediate changes in our son. The first surprise was how seamlessly he bonded with Chantel. For the first time in his life somebody truly understood his struggles and was able to provide him with tools to cope. Best of all, he was having a blast and had no idea he was in therapy.
The quality of the therapy was simply amazing. Chantel created comprehensive sessions that included gross and fine motor tasks while also addressing various sensory concerns. Each session was planned with incredible forethought and attention to the individual challenges that he faced. Chantel demonstrated tremendous command but also showed great flexibility and patience when things didn’t go exactly as planned. She provided structure and rewards to keep his anxiety level down and self-confidence up. They worked together as a team on specific goals that we had discussed after the initial evaluation. The treatment plan Chantel delivered felt effortless and it was amazing to watch our son slowly open up and gain confidence. Chantel was able to help him master certain activities that we never dreamed he would even attempt (i.e. flying across the room on a zip line became one of his favorite tasks). Chantel also was extremely generous in providing excellent support by suggesting meaningful strategies we could implement at home.
Within 3 months he had made so much progress that we went down to once a week therapy sessions. Within 4-5 months, we had met most of his treatment goals. It was a thing of beauty and joy as parents to finally see our son riding his tricycle down the street, smiling and having fun! He finished potty training, which was a major accomplishment for him. We began to see him interact with peers more at school and other social settings. Overall he was relaxing into a happy and more easy-going guy.
Slowly we have all adjusted to embrace SPD as a family. We work very hard to find “just the right challenge” as well as encourage him to keep reaching higher. My latest burning question has been… how long will he need therapy? The answer is… as long as he needs and it continues to be beneficial. This is where we are today. I am so thankful that we sought treatment when we did and did not wait for him to “just outgrow it.” My only wish is that we would have started sooner.
I am eternally grateful to Chantel for providing us with the knowledge and tools to help our son stay regulated. Our once fearful little guy now begs us to go to the park and is more eager to try new things. Chantel provided our son with the keys to finding the joy of childhood. I have so much gratitude for everything she has done for my family and would whole-heartedly recommend her to families seeking treatment or education. I recommend all parents to stand-up for their child and listen to their hearts.”