mundane yet scary moments

It is 2:30 am and I am up with my teen aspie. Usually I go out of my way to chase him into bed (he is always the last to go, excepting me of course) so I can have a couple or more hours to myself at night. It is all the peace I ever get, so it is precious to me. But now I am keeping a close eye on him. He has a fever of 104, and it's bringing back frightening memories.

Two years ago my husband and I agonized over whether or not to let T travel alone on a plane, as well as let him spend 10 days in Los Angeles (clear across the country) by himself visiting family members. He had just turned thirteen, but was extremely vulnerable. He was a little nervous about the travel aspect, but he really wanted to see his godfather and grandparents; so after much hemming and hawing, we decided to risk it and let him go. We felt so guilty that we hadn't been able to visit L.A. as much as we had originally planned when we had moved away from there five years earlier. We knew it was important for T to be able to maintain his relationships with those key people in his life, so off he went. Very bad decision. VERY bad decision, for which he almost paid with his life.

We were sending T to people who adore him most on earth. But they also didn't know anything about autism, and worse, they didn't want to HEAR anything about autism. Frankly, I don't think we acknowledged it's depth ourselves. I sent mini email lectures, and I just mostly prayed that the odds would be in our favor, and nothing bad would happen. My greatest fear was that T might wander off somewhere, but at age 13 (probably more like 8 or 9 in social maturity years), I figured he would probably be able to communicate well enough with strange adults if necessary to resolve any problems that might arise. We were anticipating that he might have social issues, if anything, but it was emergency illness that reared it's ugly head.

T had been so sick as an infant and toddler in response to his vaccinations, which was, like many other autism parents, our PRIMARY complaint. We didn't even KNOW he was autistic, because his behaviors were very mild, and his developmental delays were not that apparent back at age 6, especially for us first time parents who had no neuro typical children to compare him with. From age 5 to age 6 we often called him the plastic bubble boy, because it seemed like all he needed to become ill at that time was to merely step outside our front door. He had never been a really well child, the first year was consumed with colic, rashes, and food intolerances, he didn't sleep through the night until his third birthday, and it was difficult for him to gain weight. He had HUGE allergy shiners, and some bowel issues. He had gastroesophageal reflux for quite sometime (though they refused to medicate toddlers for this back then). During his fifth birthday "well" exam, in anticipation of possibly starting public school in the fall, we REALLY piled on the vaccines, and that was the final straw that broke the camel's back. T was sick immediately, and then with a new cold or bug every few weeks for a YEAR. I think of that time as our year in "isolation" because we hardly went anywhere or saw anybody.

But after a year of biomedical treatment, T had really rallied, and became much stronger in body and spirit. From age 7 to 8, T had a healthy appetite, collected friends like trading cards, played actively outside riding his bike, running around with the dogs in the yard, took long walks with me, couldn't wait to get in the pool, suddenly started to read like a rocket taking off. I loved it. Then I went and wrecked it by having another baby and moving to the middle of nowhere. Just a few weeks after the baby was born, my dh lost his job, and a few months shy of baby's first birthday, my dh moved back to L.A. for a year to work for his old company in an effort to staunch our financial bleeding. T was absolutely miserable, although our first couple years here, he still had friends and space to roam around. But losing Daddy for an entire year was absolute emotional torture for the boy, and who could blame him?

When dh moved back to us a year later (thank you jesus for that local job), life was a little better, but there was no doubt some damage had been done. For one thing, dh himself was in the throes of a moderate depression thanks to our long separation, and it definitely trickled downhill. Also, T was starting puberty, and though we had noticed some signs of OCD previous to that, suddenly his anxiety level seemed much higher. This was only compounded by my need to have support in his middle school years, and for the first time we enrolled him in a structured cyber school program that was a HUGE adjustment from the "unschooling" we had been practicing ever since birth. By the end of that first school year, T was so stressed out that we were thinking a trip to L.A. seemed like just the ticket for his woes.

We prepared him for the trip with social stories, I put a long list of phone numbers in his wallet, I loaded my cell phone up with minutes and let him borrow it for the trip. I made sure he had his medical insurance card, and I even called his old doctor in L.A. to dig his old records out of the archives "just in case" anything came up. Well something came up alright, and it turned out to be appendicitis, the perforated, life-threatening variety. Worse, since we weren't there with him, there was no one to rate the relevance of his symtoms, including him. T's godfather took him to his old doctor's office, but they brushed off the importance of him seeing his old specific pediatrician (who would have remembered him and his idiosyncracies) and instead pawned T off on a new partner (though old in years, and cranky) who was irritated that his godfather didn't know T's medical history better. Why should he? T was on VACATION for pete's sake, with RELATIVES.

Making the problem much more complex is a common symptom of autism: T doesn't process pain the same way neuro typical persons do. In fact, if something is really bothering him, he wants to crawl into bed under three feet of covers, and not talk to anyone or move. He certainly has a hard time advocating for himself in those situations, and cannot relate the weight or significance of his discomfort to others without a lot of support from someone who knows him very very well. The cranky old man wrote him off as having a stomach bug, and sent him on his way. He had no way of knowing how rare it is for T to complain about anything, or to vomit. A couple days later, T's poor frustrated godfather took him to another doctor at an urgent care facility, who was basically Mr. Don't Give a Damn. I believe he was so generous as to give T a prescription for augmentin, which is one of the worst antibiotics you can give to a child who has an upset stomach. Jackass.

It was killing me. T was talking to me everynight, and telling me how awful he felt. I knew that he was desperately wishing I was there. The bond between us is very very strong, and I felt a hard tug and major internal conflict. Not only could we not afford the astronomical cost of an immediate flight (or one with notice for that matter), but it would have meant leaving my aspie four year old and trying to find coverage for him while I was gone for who knows how long. Of course if I had known that T had appendicitis, you couldn't have kept me away for any reason. But all I knew was that he was miserable, and that two doctors had deemed it unremarkable, and that the other adults around him either didn't have the sense that it was life threatening (though they were definitely concerned), or couldn't convey that to us. It was probably the greatest turmoil of my life.

By the grace of god, T's body worked as it should, and his immune system rallied temporarily to prevent and fight infection. When we got him back on our coast a week after his illness started, I could tell he was a long way from better. I went to our health food pharmacy for supplies and settled in to bring him back. After a few days there was not only no improvement, but a definite decline, and I insisted on taking him into the doctor's office on a weekend. To this day, I credit his pediatrician with saving his life, because she took a short look at him and sent us straight to the emergency room at A.I. Dupont Hospital for Children in Wilmington Delaware. After a few hours of observation, they called in a surgeon for an exploratory procedure.

I refused to consent until I had the chance to speak directly with the main cheese, because the residents around me had not inspired me with confidence, mostly due to their poor ability to communicate. I felt very comforted by the fact that I recognized the surgeon immediately as the same doctor who had performed a life saving surgery on my baby just a few years earlier only six weeks after his birth when we discovered he had a twisted intestine. The surgeon told me he guessed what T's problem was, but couldn't be sure, but at any rate, they would find out when they got in there.

For the next week, I was something of a celebrity while T recovered. Complete strangers stopped me in the hallways of the hospital where my hubby and I alternated to provide 24 hour coverage for T during his stay. Everyone wanted to hear the story and share their amazement at how a child whose appendix had actually perforated and was untreated - across the country no less - was still alive. I'll never forget the look on the surgeon's face when he came out to tell us that T would be ok - it's never a good moment when you see a doctor in shock - but it's also a rare moment when you hear them tell you how wrong they were and that they can hardly believe what they saw.

NO ONE in the operating room was expecting the sight with which they were presented when they cut T open, and I got to hear more gory details than I ever wanted as they told me how they removed a litre and a half of fluid from T's abdomen, and how the inflammation was so bad that it had completely cut off his intestines from passing anything through. In fact, the appendix was so inflamed that they couldn't remove it! The surgeon told me that he cut off the blood supply to the appendix, and that it would probably shrivel up and chances were good it wouldn't even need to be removed. Best of all, by the grace of god, T had not one spot of necrosis. Most of all, they couldn't believe that T wasn't screaming with pain or acting out as they would expect from a child with his condition. I think back now that I should have used that moment to try to raise awareness. T is far from the only child with a disability who can't communicate his symptoms in an expected fashion.

T has never fully recovered since the surgery though it has been more than two years now. It's a big part of the reason that I have decided to try biomedical treatment again. He's constantly fatigued and achy, but he rarely complains. Today's fever is the first in a long time, and it's scary. Most people would probably make note of a temperature of 104. Instead, T stayed in bed, keeping to himself, wanting to be left alone. He was miserable, but it didn't occur to him to call and tell his mom that he didn't feel well. I was actually angry with him, because I took my daughter to the doctor's today, which is some distance from our house. While I was there, I took advantage of the gas expended and ran a few errands in the neighborhood.

I told T to call me if he needed me, but he didn't think it was worth the bother. When I got home too late for his doctor's office hours, I was pretty mad to discover the 104 fever. I could have been home sooner if I'd known, I could have taken him to his doctor, who knows him, who would know if this was something to take very seriously. Instead it's after 4 am now, and I'm afraid to go to sleep, in case I need to run him to the emergency room, where I expect that they will most likely dismiss T unless he's five minutes from death. T almost never gets a fever, but they don't know that. It won't seem unusual to them. T almost never vomits, but it won't concern them, because it's only to be expected if one get's a stomach bug. For anyone else, withdrawing and moaning will seem par for the course. I feel so helpless right now, just keeping my vigil and praying that he bounces right back, or at least doesn't deteriorate rapidly while no one notices that it's critical. Hopefully my husband will be up in an hour, and he can let me get some sleep while he keeps watch until the doctor's office opens. It might be nothing, or it might be everything. I wish I didn't know how fragile life can be.