When it became clear that Jed had sensory processing disorder, there were many emotions involved. Guilt – for not getting him help sooner. Sadness – that this wasn’t just a phase that he would outgrow. Relief – for finally having answers and being able to get help. But there was also one more. Panic. I became so worried that sensory processing disorder would define him. Our sweet Jed has so many amazing qualities. I did not want his struggles to define him. And it bothered me so much that it might. So I want to share something and shout this from the rooftops – sensory processing disorder will not define you or anyone. Unless you let it.
Fighting the Fear
In the days following Jed’s diagnosis, I was gripped with the fear that sensory processing disorder would define him. It was a worry over and over in my head, just wondering if anyone would see past the struggles in my child. Eventually I got my head straightened out a bit and started praying this whispered prayer over and over throughout the day, “God, don’t let this define Jed. Let this be a refining fire, but don’t let this define him.” As I came to peace with the diagnosis, my thought process once again turned.
A Whispered Prayer Turned Blessing
Every night I check on my kids before I go to bed. It is just part of our routine. I usually pull their covers tighter, make sure they’re comfortable and whisper a few words or a prayer over them. For a long time now, one whispered blessing has been repeated over Jed often. “Sensory Processing Disorder will not define you. You are so much more. You will climb mountains and people will see beyond the symptoms. God will make it happen.” For a while, it honestly felt weird. It felt like I was speaking something that I could not honestly predict. What if I was wrong?
But as time went on, the whispered words become more confident. Believed. Strong. Because as I spoke the words time and time again, I saw it happening. It was not just a prayer or a blessing, it was becoming a reality.
No Sugar-Coating: Sensory Processing Disorder is Hard
The reality is that sometimes sensory processing disorder symptoms do interrupt our life. Jed gets overwhelmed by loud noises, chaos, crowds, and many other things. Sometimes that means he cries or is confused or struggles to function as a normal 4 year old. Sometimes it makes his stomach upset. Sometimes it makes him clingy or very emotional. Other times it might make him angry or he’ll retreat into a shell and hide in a corner. It does effect his life, and our life as a family, as we navigate sensory processing disorder and find ways to help him. I’m not going to sugar coat it for you. It can be very hard. But hear me again, sensory processing disorder will not define you, just as it will not define Jed.
There is so much more to Jed than the symptoms. He has the most contagious giggle and laugh. When he chooses to share a story with you, you can tell he has put immense thought into it. He loves to give hugs and cuddle. He thrives in Alaska – he loves being outdoors in this wilderness. He loves to giggle over a book or story. Jed loves to play with his siblings – and he is absolutely the most mischievous of my three children. And he has very deep insights for a 4 year old. Yes, sometimes sensory processing disorder can overshadow those amazing qualities. But it does not define him.
The Blessing Becomes Reality
And how do I know this? Because people mention it to me continually. One person after another affirming to me that sensory processing disorder will not define Jed. I cannot tell you the number of people who comment to me about Jed’s smile. Or the multitude of people who cannot help but laugh when they hear Jed’s giggle. I cannot even begin to count the number of people who, just this year since diagnosis, have told me “I do not know what it is. But there is something about Jed that simply has won my heart.” A whispered prayer, turned blessing, turned reality. You all, sensory processing disorder will not define him. Sensory Processing Disorder DOES NOT define him. Nor will it define you or the loved ones who struggle with it.
You simply have to see beyond. To see the quiet moments in the midst of chaos. To see the joy shining from eyes that are sometimes clouded with confusion. And if you don’t see it, start listening. Someone will say it to you. Someone will see beyond the symptoms. Because sensory processing disorder will not define you.