The day after I last posted, Tony was up at 1:29 am (been there, done that at nearly the same time, right?). He was bouncing energetically on his bed, and presented in every way as he normally does in the wee hours of the morning. About half an hour after he woke up the second time, I was noticing that his breathing was becoming faster, and he was trying to sniff deeply through nostrils that sounded mostly congested. I brought down the humidifier.

Our sweet son was moving around still, but with less enthusiasm- and by around the time Emily arrived he was mostly laying down on the Fuf, clutching a soft blanket. I began checking his temperature every 30 minutes or so, and I apprised Stephanie, Cecy, and Casandra via e-mail of his symptoms. We had a full day of therapy planned that would have ended with a meeting to discuss our little man’s ABA and habilitation programs scheduled from 5-7 pm. By 11:15 am, I was having to notify the team that a fever was now on the symptoms list and everything for the rest of the day would need to be canceled.

He slept for a few hours, shivering and mostly refusing to move as his fever was not fully quelled by the Tylenol I gave him. I had to carry him to the bathroom most of the day, and he flinched away every time my hands gently touched his skin. He refused to drink, and I had to spoon feed him bits of ice cream and popsicles to keep him hydrated. That, above all, was my biggest fear. Our little man is very insistent on avoiding things he finds aversive in the moment, and one cannot count on explanations to garner cooperation- especially in times of illness.

Anybody working with Tony for whatever reason has to ask themselves if their goal is to help him get better or gain new skills or if it is to enforce the societal expectations that children obediently follow all adult-given mandates. Unfortunately, anybody working from a more authoritarian model will quickly find that Tony is more than capable of refusing any and all requests regardless of what is offered or withheld for his cooperation. He wants what he wants, and if he doesn’t want to be doing what you asked…well. Anybody insisting Tony conform quickly finds themselves in a position of diminishing results or progress- if not a complete standstill.

My first priority with everything is to keep him alive, healthy, and to help him gain skills wherever possible. His emotional well-being is important to me also. From my perspective the best thing I can do is avoid turning everything into a pissing match about who is the boss here. Right now, with the severity of his Autism Tony is not in a place where he believes that he’ll ultimately get more of what he wants with more reciprocal cooperation. He’s still focused on trying to find ways to get everything he wants without having to do anything he’d rather not. He is more willing to participate with things he struggles with if they are combined with elements he enjoys, such as movement and TV breaks. You can get something with Tony or you can get nothing, and he’ll just as happily hand you the latter if you insist on calling all the shots and dictating every term.

All of this is even more important to keep in mind when Tony is sick. We’re trying to work on weight control because of how the Guanfacine is interacting with him, but when he is refusing to drink healthier options because of an illness, I have to fall back to what is my first priority (keeping him hydrated so he can recover). So that first day he subsisted almost entirely on spoon-feedings of ice cream, popsicles, and pudding because he flat out refused everything else.

I instructed Hannah to wash her hands frequently, hand sanitize as needed, and avoid her brother if at all possible until he started to recover. I noticed that my body felt like it was fighting off something, so I busted out the neti pot, Angela Liddon’s healing rooibos tea recipe, and a few desperate prayers that my body could shrug this off. I hoped Tony would sleep through the night, despite his hours of napping.

He awoke, muted and shivering, at 3:08 am. I went into his room, helped him to the bathroom, and took his temperature (still nearly 102 F). I gave him some ibuprofen and Mucinex. The last is a triumph, because it represents an important bit of progress for him.

On the Friday he became sick, I braced myself for a complete and total shutdown from our little man as I attempted to get him to drink some children’s Mucinex. Hannah assures me the stuff tastes incredibly nasty (for both generic and brand name). Tony himself did not look too pleased with the taste. I told him that this medicine would help him breathe better. Typically, one cannot expect any success getting Tony to take something that he dislikes even when there are clear benefits to him.

He scowled at me and contorted his face, but drank it after only one attempt to knock my hand away. The dose helped him enough that four hours later when I asked him if he would take more, he only growled at me and then popped his mouth open. When he awoke in those early hours on Saturday, he didn’t even object. He was still scrunching his face up (I’m guessing he agrees with Hannah about the taste) but thankfully has recognized a significant benefit to himself that has allowed him to overlook that.

By the third day of this illness, our little man was getting worse, sleeping nearly 20 hours a day and becoming less cooperative with taking any fluids or medicines. I was having to pause his movies every few seconds to gain cooperation for small sips, and he was sleeping through most every video, waking up long enough to request a new one. I am trying to give him some choices that he can refuse and not compromise his recovery so that he feels like he has some control. For anyone not liking my methodology here, I personally consider it to be far kinder to both his emotions and his health than a hospitalization for dehydration.

By day four I was back to having to carry him to the bathroom, and Hannah was sweetly taking care of a few extra chores to try and help out. We saw the husband of his regular PCP (who is also an MD) on Tuesday morning. A secondary ear infection was found, and he elected not to do the nose swab to confirm flu- a decision I support under the circumstances. It would not have changed the treatment for Tony’s flu-like viral symptoms, but would have caused considerable unnecessary distress. I was willing to go there if we had to, but I am glad we did not.

While Tony did try to push his way out of their lobby twice (he was pretty fearful, knowing himself to be sick and therefore more likely to be poked in ways he finds painful) he did cooperate enough for them to get his weight, height, and temperature. He also allowed the doctor to look in his ears and listen to his lungs. He would not leave the pulse ox sensor on, but he did let it be placed on his finger twice. This is part of an ongoing trend for improvements in his tolerance of standard portions of medical exams. I was told to report back to their office if the fever wasn’t gone in 48 hours.

A couple hours after that visit, I placed Tony in a shopping cart left near our parking space at the pharmacy, and ran across the parking lot on a mission to pick up his antibiotic (for the ear infection) as the clouds reached down to us with misty sprinkles. Tony perked up enough to briefly half smile at my burst of speed, but still slept most of the day after we got home. He woke up just after 3 am the next morning, and I again checked his temp. Finally, the fever was gone.

Right now as I am typing, he is napping again, still recovering. He has been awake a little bit more of the day (he resumed multi hour middle of the night wakefulness last night also), and is drinking slightly more, but I am still carrying him to the restroom most of the time when he needs to go. He hasn’t gained any more weight during this illness, but he surely hasn’t lost any either. And because he wasn’t wanting to go to the bathroom as much, he was holding in his bowel movements so I ended up needing to give him some milk of magnesia yesterday and convert some of his liquid choices to prune juice, which he thankfully has loved since he was a baby (his first pediatrician had us adding it to his formula because of constipation problems that began in his first few weeks of life). At last this morning he had his first bowel movement in five days, and I breathed a deep sigh of relief.

Managing illness isn’t easy when a kiddo is this big, this determined in certain things, and struggles this profoundly with medical procedures/interventions. We hadn’t gotten his flu shot this year because the start of vaccine season started while we were dealing with the side-effects from the Sertraline attempt. By the time he had fully settled down from that, we had therapy providers on vacation for the holidays and he was very emotional about that. The timing never felt quite right to attempt something that can cause him to have a major flip-out that poses a risk of injury to medical professionals under even the best of circumstances. Looking back, I still would have made the same decisions. So I can’t change this story, and I can’t write it in ways other people might prefer. I can only work with what is and continue to do the best I can to navigate and balance everything and everybody’s needs.