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  • Writer's pictureEmily Johnson


This is a tribute to a unique class of high performance endurance athletes that I’ve come to know as parents of children with special needs. Specifically, parents of children with PANS or PANDAS because that is the diagnosis that I know. I cannot pretend to know all special needs diagnoses but I can continue to work to understand and learn more. The truth is we all can.

One mile into a run the other day the naturally occurring parallels between endurance athletic events and special needs parenting floated into my consciousness. Perhaps it was due to a recent reflection around a past desire to complete just one more Ironman triathlon or maybe it was the first mile adrenaline being released. Whatever it was - I could clearly see the similarities. Also evident beyond the similarities were the differences.

Notice the three similarities and three differences.

Maybe you as the reader can relate? Or maybe you have a friend that can relate?


1. Welcome to the never ending mile where physical and mental fatigue can become overwhelming. Slowing down we might just stop dead in our tracks. There’s a never ending battle to just put one foot in front of the other and our ability to focus is quickly lost. Our body begins to tighten and ache and notice how weary we feel. Our game face and confident smile have quietly faded into furrowed brows and heavy eyes. Loud and agitating thoughts hold our mind hostage. The clock continues to tick and we think, “When will this be over?”

2. Welcome to the most emotional experience of our lives. Where should we start? Let’s not waste any time sugarcoating s#%$. Anger, sadness and grief are real. So are joy, gratitude and love (which is why I created The PANS Party Project). If you’ve never done a literal endurance event it might sound weird that hard emotions can be a part of that experience but just trust me on that ;)

3. Welcome to WTF do I do now? Sometimes when the event or experience is over we can be left feeling like we have absolutely no direction or idea of where to go or what to do. It’s easy to be consumed, head down with our eyes on the finish line and then suddenly - it’s over. But is it truly ever over? This experience has become a part of you but it doesn't have to be what defines you. We get to decide what steps we take next and if you’re not sure - well then you certainly get to sit down, take a damn rest and figure it out!


1. There is no training plan for becoming a special needs parent. Some of us were seemingly thrust into the role overnight. Forced to start the event without any knowledge, preparation or equipment the probability of added challenges is high.

2. There is a lack of support along the way. Support is offered in the form of a flimsy expired bandaid to cover a hemorrhaging wound. Our systems in the United States are not built to proactively attend to your needs along the way and we are left broken on the sideline begging for help. If we’re lucky we’ve packed a dime to phone a friend and enough duct tape to MacGyver our situation back together until we can secure more aid.

3. There is zero fanfare. There are no bright lights, ceremonious medals nor any bell to ring. And there’s certainly no flash photography or video. Things unfold quietly beyond heavy curtains. When progress is made or milestones are met it is done so in a tentative and timid manner. You can almost reach out to feel the wisp of shame and isolation trace past your fingertips. It’s a very odd and disorienting place to be.

But what's true is that we emerge stronger on the other side

To all the special needs parents and caregivers I see you in the shadows and out in the front of the pack.

Let’s continue to support and inspire one another.

Be well. Keep going.

- Emily

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