To the parent of a child with Sensory Processing Disorder (SPD):
I’m so grateful our paths have crossed. I want to take this opportunity to tell you how brave you are and how much I admire you. I know you, because I, too, am a parent to a child with SPD. I can remember how isolated I felt when, aside from my son’s therapists, it appeared I was the only person on this earth who even knew what SPD is. October is Sensory Awareness Month, so I wanted to take a moment to bring awareness to the SPD you and I know all too well but others may not see. Your story may be a little different than mine, but I hope you will find comfort in knowing I am mother who completely understands how you feel. As the author of this post so graciously put it, “I am here for you, and I believe in YOU.”
I pray that you are reading this during the light of day, but I also know it may be 3:30 A.M. and you may have happened to stumble upon this post after scouring the internet for hours with teary eyes, desperately searching for answers. The SPD others don’t see begins in the early hours of the morning as parents begin the slow and methodical routine of preparing their child for the day. Many are unaware that several children with SPD struggle with severe feeding issues that may prevent them from eating anything for breakfast, often causing a horrific domino effect on the child’s entire day. Others don’t see how excruciating it can be to do something as simple as brush your child’s teeth or hair, trim their fingernails, or dress a child who can’t stand certain articles of clothing, tags, or buttons. We must take into account our precious child’s every sensation before we’ve even left the house. This is the SPD others don’t see.
In the car on the drive to school, others don’t see our child’s eyes well with tears due to the massive anxiety slowly building in anticipation of entering a classroom. Others may see you peel your screaming child off of you and pass him/her off to the teacher, but they don’t see you wipe away your tears as you drive away from school wondering what a “normal,” tear-free school drop-off feels like. Others don’t realize even the slightest change in school routine can send a child with SPD over the edge. A fire drill, substitute teacher, holiday musical performance, or countless other events that may be exciting for some children, may cause our children to spiral. A simple change can cause sleep and food intake to dwindle even more, and this is just scratching the surface. This is the SPD others don’t see.
When your child’s school day is done, you know what lies ahead. SPD has woken your already exhausted child way too early, possibly prevented him/her from eating breakfast or lunch, and sent his/her sensory system into over-drive for hours during school. When your child finally falls into your arms at the end of the school day, you want nothing more than to bring him/her home to a safe place. You open your door, and for a moment the weight of SPD is lifted from your child.
Fatigue in the afternoon often causes my already exhausted child to trip or fall more easily. Something as simple as a bump on the knee or a paper cut can seem like a broken bone to a child with SPD. It takes a lot of work to slowly bring their sensory system back to normal, but you work hard to get there because of the few hurdles you have left to conquer before bed time. In the evening hours you work desperately to keep your child with SPD regulated in hopes that maybe he/she will eat dinner. What others don’t see are the critical steps you take to make sure your child’s food maintains the desired temperature, smell, and texture. It must be served in the same chair, in the same way. One misstep could result in a meltdown. After dinner, you and your child head to the bath, because SPD may affect the way the falling water from a shower head feels on your child’s skin. Some days you fight through the screaming and the tears as you wash your child’s body and hair during a complete and utter meltdown. The slightest increase or decrease in water temperature may result in sensory overload for your child. This is the SPD others don’t see.
As I crawl into bed each night (often without returning a single phone call, text, or email), I often have to battle the intense mommy guilt that rests so heavily on my heart. What could I have done differently to support my child as he struggles with SPD? Did I give enough of my time and energy to my other child or my husband? These questions haunt me every day.
I want to leave you with this: You are not alone. Trust your gut in just about everything you do. Know that others will NEVER fully understand the scope of your journey, and try not to let this discourage you. Allow the words of the ignorant to flow in one ear and out the other. SPD will not define your child; he/she will grow to do amazing things. Celebrate the micro-changes, and let those victories give you hope for the future. Love on your babies, and know that at the end of each day you did the best you could. I admire YOU, and I believe in YOU.