Lauren Saccone and her husband Jason struggled for three years, wondering what was wrong with their firstborn baby girl. Finally, Sadie was diagnosed as having ‘Sensory Processing Disorder’.
WORDS CHRISTEL GERALYN GOMES
Too many childhood disorders are dismissed as “behavioural problems” with parents blamed for raising children who are labelled “spoilt” or “difficult” or “lacking discipline”.
This was exactly the case for Lauren and Jason who faced more than their fair share of shaming. “We were having a lot of trouble getting teachers and our school district to recognise Sadie’s needs. It was hard believing that her issues weren’t our fault because we were being judged so harshly while she had multiple meltdowns a day. I was tired of my daughter being misunderstood and my husband and I blamed for her behaviour,” said Lauren.
What is SPD?
According to WebMD, “Sensory processing disorder (SPD) is a condition in which the brain has trouble receiving and responding to information that comes in through the senses. […] Common sounds may be painful or overwhelming. The light touch of a shirt may chafe the skin.”
Lauren, mother of now seven-year-old Sadie, describes the condition as “a traffic jam of information”.
SPD manifests differently in different people. It can affect just one sense, such as a person’s hearing, touch, or taste, or multiple senses at the same time. Those with the disorder can be over-responsive or under-responsive to sensations, with some being a combination of both.
“My daughter is a combination: She can be over-responsive to sound and touch but under-responsive to bodily stimuli like motion, and equilibrium,” said Lauren.
There are many symptoms, and according to WebMD, these include being uncoordinated, bumping regularly into things or being hard to engage with in conversation or play.
In Sadie’s case, “as a toddler, her reactions manifested itself in extreme behaviours like meltdowns, screaming or fleeing a noisy environment. When she becomes over-stimulated, she may get hyper, crash into things, talk excessively and have trouble with personal space boundaries. She also has the tendency to put objects in her mouth when she is seeking sensory input”.
However, Lauren and Sadie have learnt to manage these behaviours together. “She has learnt to become more self-aware and can use tools to meet her sensory needs. For example, rather than putting something in her mouth that shouldn’t be there, she will chew gum to satisfy that oral craving. She may also wrap herself in blankets to calm her body when she needs sensory input,”
Journey to Discovery
Although Sadie can manage herself well now, getting to this point was long and difficult, taking a lot of work and sacrifice on Lauren and Jason’s part.
Sadie’s first sensory meltdown happened long before her parents had any inkling as to what SPD was. It was soon after birth when she showed her first signs of SPD during a diaper change. “She was put under fluorescent lights and a cold wipe was used on her skin. Startled, Sadie held her breath and her heart rate dropped. She had to be monitored in the nursery for 24 hours after,” recalls Lauren.
As she grew, the couple noticed other things that were slightly odd. “She wouldn’t sleep until we filtered out all natural light in her room. As she entered her toddler years she would become agitated when I dressed or groomed her. But our biggest sign of an issue was having a meltdown in a noisy environment,” said Lauren.
When Sadie turned three, Lauren’s cousin who worked in a special education preschool thought it looked like ‘Sensory Processing Disorder.’
The couple took Sadie for developmental, medical and psychological evaluations and found that SPD was not yet a medically recognised condition in the United States, only known as a coexisting disorder to Autism or ADHD.”
Sadie was only finally diagnosed with SPD at age four after she was diagnosed with ADHD.
Adapting to Change
The news was bittersweet. “We felt immediate relief when we finally got a concrete answer. But I also remember going to my car and crying after. As much as I wanted a way to justify Sadie’s struggles, I had to accept that my child had a disability—a hard pill to swallow,” she adds.
By the time she was diagnosed, Sadie was already struggling with unaccommodating teachers who felt she had behavioural issues. Both Lauren and her husband committed to advocating for Sadie.
But accommodating an SPD child did not come without sacrifice. “It took a while for me to understand that we would have to limit things we loved because Sadie couldn’t handle it.” Lauren and her family stopped their yearly tradition of going to New York city for the fireworks and music.
“One of her biggest triggers was hearing people sing ‘Happy Birthday’ so we learnt to leave before the song. Parties, parades, movies, theatre shows, fairs, festivals, amusement parks, any loud, crowded or chaotic event, or even the beach—because of the sand and wet bathing suit on her skin—was difficult. I really felt like we were missing out,” Lauren confides.
But sacrifices always come with their rewards. Lauren learnt that she could replace mainstream traditions with ones that were personal, intimate and deeply special to her family.
Today, Sadie has learnt to swim, taken her first airplane trip and even gone to Disneyworld.
“Disneyworld is possibly the most overwhelming place on earth, and not only did she tolerate it but she enjoyed every second!
“Sadie and I spent months watching video clips of the different attractions and created an itinerary specific to what we thought she would tolerate. We read books and talked a lot about the airplane and what she could expect. We also travelled with many of her sensory tools. This is how we tackle anything new. We plan carefully and take her lead. If we come to something she still wants to avoid, we are all okay with that. She is now quite confident in herself and comfortable with her limits. As parents, we find this to be what we are most proud of,” said Lauren.
Lauren recalls a time when Sadie was still a child of three. She said, “Mummy, what’s wrong with me? Why do I cry all the time?” It broke Lauren’s heart. “I will never forget her face, her voice and every other detail of that moment. To see this little child carry such a heavy burden and be so aware of it was the hardest moment of this journey for me.”
Thankfully, today SPD does not limit them anymore. “At age seven, Sadie is in the best place she could be in managing this extra set of needs.”