When you have a child that’s different, your expectations of what life is going to be like change every single day, and in ways you never considered. Every new challenge comes with an “it never occurred to me that THIS might happen” tacked on. Something as simple as everyday normal childhood illnesses can turn into unreasonable situations that you just never realized were possible.
My oldest boy is thirteen. On the Autism spectrum, he’s always had an odd relationship with illness. He doesn’t really run fevers. Ever. The highest I’ve ever seen it was 99.6 degrees, just one degree above normal. He doesn’t complain of headaches, upset stomachs, or other aches. He was seven or eight before he learned to recognize the feeling of nausea and make it to the toilet on time. I don’t know how I would have survived without carpet cleaners. He once fell off some monkey bars at school and had the wind knocked out of him. They told me when I went to pick him up, but he seemed fine by the time I got there. The next morning, he couldn’t put his shirt on and brought it to me for help. His elbow was double the size it was supposed to be and he couldn’t bend it. He’d sprained it badly when he fell but didn’t realize he’d injured it. His brain just doesn’t process pain or injury the same way yours or mine does. Cue the nightmare scenario.
I was 24, my husband was 26. We were concurrently dealing with an Autism diagnosis in our three-year-old and diagnosis of hypothyroidism and pituitary dwarfism in our two-year-old. I was working nights, sleeping in chunks whenever I could find some time. We were going to four or more appointments for therapists or specialists each week, and making a weekly trip two hours away to a research hospital where the three-year-old was receiving treatment for his Autism diagnosis. The stress left me frazzled and was eroding my marriage faster than I could notice it happening.
I came home from work one Saturday morning to the usual mess of a house with two toddlers in it. I changed into jeans and an old t-shirt and was unwinding when I went to change my son’s diaper. I laid him down and pulled up his shirt and discovered a vivid, red, splotchy rash covering his torso. I asked my husband how long it had been like that, and he said he hadn’t noticed it. He did mention that my little buddy had been more irritable than usual and that he had woken up several times during the night, but other than that seemed fine.
(Insert irrational, angry accusations and argument here.)
I bundled up my child and rushed him to the Urgent Care clinic, which happens to be the same office as his pediatrician. Vitals were normal, other than his temp being slightly elevated at 99.0 degrees. We were seen by a young doctor, who I had never met before, who looked at the rash, and immediately looked inside my son’s mouth, then called for a quick Strep test. While it was running, he shut the door and began with a lecture. Did I know that the back of my son’s throat was blistered and red? How long had it been since the boy had been able to swallow? Why hadn’t I brought him in several days ago, when the sore throat first began? He couldn’t remember ever seeing anything like it, and he was fairly certain the strep test was going to come back positive, and that what my son had was Scarlet Fever. Cases of Scarlet Fever are exceedingly rare now since most strep infections are caught and treated before they reach that point.
I stood there panicked and feeling ashamed, trying to explain to him that my son is Autistic. That he doesn’t speak and can’t tell me what’s wrong, and he doesn’t respond to pain normally, and that he didn’t have a fever. He never stopped eating or swallowing. “In fact, he just drank a whole twelve-ounce sippy-cup of orange juice in the waiting room,” I told the doctor, and I pulled the empty cup out of my purse as proof. I explained that the rash this morning was the first evidence I had seen that anything was wrong and that I brought him in right away. I told him that he had been seen three days before at the research hospital by a whole team including a physician, a neurologist, and the psych team and that not one of them noticed anything out of the ordinary either. He shook his head and walked out. I sat there trembling and holding my son, feeling overwhelmed.
When he returned with the nurse, he told me the test was positive. He told me that he was calling in a prescription for an antibiotic and that I needed to pick it up on the way home and start it immediately. He then asked if I was going to be able to do that, or if I would need any help to make sure it was done. I assured him that it would not be a problem. I felt that there was something off about his tone, that there was something wrong. I was right. He informed me that due to the nature of my son’s illness, and the fact that I had not sought appropriate treatment for him sooner, he felt it would be in my child’s best interest to make a referral to the Department of Social Services. I just sat there blinking back tears as he walked out and the nurse handed me the checkout sheet.
I returned home and cried. And fought with my husband, then cleaned my house from top to bottom four or five times, watching out the front windows all the while, waiting for one of those little white cars with the county seal painted on the side to show up. I went to work that night after not having slept at all. I came home Sunday morning and crashed, then woke up and compulsively cleaned some more before going back to work again. I was tense, edgy, fearful of having my children taken away, scared, angry, and a dozen other things all at once. All because some new doctor, who’d never met me or my family, made a judgment about me based on a ten-minute visit with me and my son, and a lab test. It was one of the most terrifying times of my life and it will stay with me forever.
Monday morning, when I returned home from work, my son’s pediatrician called me personally. He first asked how my son was doing, then let me know that he had seen the note in the chart from the other doctor to make a DSS referral and that he told his staff not to do any such thing. He said he knew that I took excellent care of my children, especially considering their special needs, and then apologized for my having had to go through that. He said that in most cases if a young mother comes in with a child in that condition, that is what they would do, but he also knows that my son doesn’t run fevers, and doesn’t complain of pain, and can’t tell me what’s wrong. I blinked back tears again, but for a different reason. I felt vindicated, but even more, I was so grateful to my son’s doctor for being so in touch with my family.
Fast forward ten years. My then-husband and I divorced (amicably) and I began a new relationship with a wonderful man willing to help me raise two children with special needs. We also had a child together, and he’s now five. When he was two, we began noticing some quirks and oddities, and having been down this road before, had an Autism Spectrum diagnosis quickly. He’s a bundle of fun, and while there are some similarities with my older son, there are definitely some drastic differences. He has significant speech delays but has never been non-verbal. In fact, he’s quite verbal. All the time. To the point of making us all nuts, but I have to find joy in it. I spent a full two years unable to communicate with my older son, so the odd speech patterns and noise that this one makes are something to delight in.
One night, when he was three he woke me up screaming at four in the morning. I went flying up the stairs to his room and found him lying in bed, burning up, sweating, and crying. There was no question that this boy had a fever. (Score!) I soothed him, told him I was there, that I was sorry he didn’t feel good, but I was going to go get him some medicine. I returned shortly with some Tylenol for the fever, with him whimpering as I gave it to him, and I told him he would feel better soon.
As I stood up to leave, he said “Ear. Mommy, Ear.”
I stood in silence, frozen in his room, looking at him on his bed, and I let it sink in. The enormity of that moment will also stay with me forever. He had just told me that his ear hurt. It was the first time he communicated a medical need to me with words. For me, just entering a second journey into this world of puzzles and heartaches, it was like a weight had been lifted off of me that I didn’t know was there. An underlying fear, somewhere in the back of my mind, that we were going to go through another few years of tiptoeing around doctors had vanished. This child was going to be able to tell me when he was sick, when his throat hurt, or when he had an earache. We would never have to go through the Scarlet Fever Nightmare or any other similar scenario. “Okay,” I told him, “I’ll take you to the doctor tomorrow.”
I left his room, turned off the hall light, and went down the stairs. Near the bottom, I just sat down on a step and began weeping uncontrollably. Partly because of relief, partly because I didn’t even realize I’d been holding onto that fear. Those three little words in the dark, in the middle of the night, had essentially changed my life. His dad came out of the bedroom in a bit of a panic and asked me if everything was alright.
“Yes!” I sobbed. “He has an earache!”