Bittersweet Fevers

One of the hardest things about being a parent to Reine is when she gets a fever. It is a bittersweet time. It leaves us torn between two worlds as a veil lifts for a couple of days and then comes back down. As a parent, it is something that is sooo hard to experience. I want what is best for my child. I want her to be accepted for who she is by all that she meets. I want her to know that she can do anything she sets her mind to. I want her to be happy, to be loved, and to be cherished for everything that makes her Reine. Autism, SPD, CVS, ADHD, all of it is a part of who she is. It is her daily life. It is our daily life. It is her reality. It is our reality.

When Reine gets a fever, we get a glimpse into what she would be like without her autism, SPD, and ADHD. It all basically disappears whenever she runs a fever of over 100 degrees. This lasts while she is both running the fever and for a couple of days after her fever breaks.

80% or 4 out of 5 people with autism experience a lessening of their “autism” with a fever of over 100 degrees. I chose to say their “autism” because autism is different for every person on the spectrum. Just because you know one person with autism, does not mean you know autism at all. You only know that one person. In some, like Reine, their “autism” seems to disappear completely. In others, their “autism” lessens considerably during this time. Just like no one’s sure what causes autism, no one understands why this happens with a fever of over a 100 degrees. There are many different theories, but most experts believe it has to do with the wiring of the brain. Whatever the reason, it is bittersweet.

We come face to face with what appears to be society’s version of a “normal” Reine. She can tell me her head hurts, her tummy hurts, her throat hurts, what color she wants her nails to be painted. She requests certain foods to eat for dinner. Her speech is clear and precise. Her meltdowns stop. She wants to be read to, held, played with, the list goes on and on. For a couple of days, there is clear communication between her and us. She is able to completely communicate with us and us with her. I wonder what it is like from her perspective. Does she understand that something is different? Can she feel the veil lift?

Just as quickly, that veil once again lowers and we “lose” this normal version of Reine. Her speech returns to her normal, her meltdowns from frustration begin once again. We are back to our “normal”. It is something that as Reine’s parent, I have a hard time grasping. Everything that makes Reine…. well Reine…. disappears and we are shown who Reine would be without her autism. It is a life that appears to be so much “easier” on the surface.

Autism is hard. Seriously, it is not for the weak or faint of heart. It is a journey we did not sign up for. It is a journey that we are on nonetheless. It is our journey. One that I do not regret navigating through. Reine is soooo worth it.



One thought on “Bittersweet Fevers

  1. What a beautiful little girl and what a tough journey the whole family have to deal with ! God bless you all and I hope that there will be away to end this illness ASAP !

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