by Cathy Jameson
I’ve often heard that children on the spectrum who come down with a fever actually act more “normal” than when there is no fever. Normal to me means someone who is happy, cooperative, responsive, and basically doing what they used to do before they succumbed to their autistic traits. I have wondered if I would ever witness this behavior in my own son. Happily, I got to see Ronan normal again. It was a treasure to behold. I had my kid back if only briefly.
Don’t think I was jumping for joy neglecting my son and his declining health. I was a bit worried about the fever. I knew Ronan was getting the chicken pox as he was the last of my four children to finally catch the annoying virus. I was very curious to find out if Ronan COULD get the chicken pox. He has such a compromised immune system that the two spots that showed up the first week my youngest got the pox made me wonder if that was the extent of the case Ronan would get. Two spots that came, got big and nasty looking and then went away within a week got me thinking, wahoo, Ronan got the pox, he didn’t scratch and now he has immunity. Well, those spots were probably bug bites and were nothing compared to what tormented him a month later.
On Ronan’s first day of the high fever he just wanted to snuggle. Ronan doesn’t like to snuggle so much because he has some amazing attention issues mixed with some bad sensory issues. You have to sometimes entice him with a toy or movie to grab his attention, then trick him and hold onto him gently yet firmly and grab a hug. It can last from a nanosecond to about 10 seconds depending on the time of day. That first feverish day, I got about an hour of pure snuggle time. Ronan wouldn’t let go of me and I held on for as long as he would let me.
Day two of the pox was much like the first day. Ronan was much quieter, lost his appetite and seemed very wobbly on his feet as he continued to get the chills. Pox multiplied as Ronan entered his feverish state. Even with the nagging feeling to itch, Ronan actually started to listen better. Sure Ronan can hear, but he quickly responded to many of my prompts. He went to sit in his chair when I said it was time to eat. He came to me when I said let’s get socks and shoes on. He lifted his foot and waited until I put a sock on before lowering his foot. After naptime, Ronan usually runs like mad to get out of his room. That day, Ronan stood up and made his bed! (Making the bed means putting any blankets and bed buddies back on the bed—they don’t have to be neat, just on the bed.) This was a great accomplishment. Ronan clearly was coming out of a brain fog and I loved every minute of it.
Day three and four were similar to the first two days of chicken pox. Ronan continued to be patient, quietly requesting with his gestures to get my attention instead of crying and throwing himself on the floor. Ronan sat nicely while waiting to be served and one night, God love him, Ronan put his fat hands together while the rest of us said our mealtime prayers! He used to do that all the time.
Things started going downhill and back to “Ronan normal” the following two days. Ronan was more agitated, less compliant and was making increasingly more negative vocalizations with his requests which turned into irate demands. Ronan attempted to speak many, many times during his sickness but again I could not decipher what he was saying. I pretty much knew he was ticked off about something though. The child who sat nicely, waited patiently and followed simple directions went from happy to throwing himself to the ground crying, “Da da da da da da!” I lost my moment of normal and that bit of hope that flew in with it.
My girls got the chicken pox first followed by my sons. Both boys are vaccine injured (but not by the varicella shot as they never got that one). Both boys had far worse cases of chicken pox than the girls. Both boys got the pox from the top of their heads down past very uncomfortable private areas. Both boys cried and cried as the days went on and on with those itchy chicken pox.
One boy, my biggest worry and my biggest hope, came back into our world for almost a week. Now that the pox have run their course, Ronan is struggling again with communication and with those daily living skills we all take for granted. He tries so hard to be a part of his family. He tries so hard to tell us what he wants and needs. He tries so hard to live in a body that is damaged. Ronan has determination to keep himself alive and kicking, getting through one day to make it better in the next. Ronan is living as normally as he can right now. He is a bigger inspiration than many role models. Ronan is teaching me more humility as we march down this path to recovery. That darn chicken pox reminded me of who Ronan is: the person within and beyond his autistic symptoms and the person he will be again one day.