We can all agree that raising children is challenging at times but raising a child with autism, or any special needs for that matter, takes those challenges a step further. Those challenges are greatly magnified when the child is nonverbal. There is nothing that has caused me more worry and anxiety than when Brian is sick. As a toddler he had many ear infections. He also struggled quite a bit with asthma (fingers crossed because it seems he may have outgrown it). To complicate things even further add severe food allergies into the mix, I mean …..why not? The perfect combination to push this mom to the edge. Not over the edge (yet) but pretty darn close. I think I have spent the past 14 years wondering (obsessing, actually) how Brian feels. Nothing fun at all in that guessing game.
We’ve had horrific bouts of crying spells that have warranted trips to the ER. I’m talking inconsolable crying, screaming and often head banging on the nearest wall or ceramic tiled floor. I can’t adequately put into words what that did to me so I’m not even going to try. I couldn’t console him and I had no idea what triggered the behavior, and of course my brain went to the worst case scenario. When we did go to the ER and have exams and testing done, nothing was ever detected. One time we were told to seek psychiatric care because the doctor had nothing better to say.
When Brian’s asthma flared up, which seemed like a lot in the early years, it was a nightmare. I tortured my friend to come to my house several times a day to listen to him with her stethoscope. Round the clock breathing treatments were needed and for a few years we had to administer preventative daily treatments. I constantly attached myself to him, even sleeping (not sleeping) on the floor in his room for fear he would take some turn for the worse and stop breathing and die in his sleep. This is how out of control my anxiety had become. Full disclosure…..I once called an ambulance because he had croup. Before you write me off as hysterical, I have three other kids who did not cause me this kind of alarm. They communicated to me when they were sick, we visited the doctor if need be, followed directions, took the medicine and thankfully they got well. When you’re dealing with a child who can not communicate their thoughts, fears or overall well being — other than through crying — it is a complete game changer and I suspect that even the coolest headed mom would be thrown off. I do my best to function normally under this kind of stress but, honestly, I’ve been thrown off for 20 years. Off is who I am.
One particular stomach virus still makes me shudder. I had taken Brian to the park and he seemed a little quiet and lethargic. My husband was in the Outer Banks with the other kids so it was just me and my best buddy. He fell asleep as soon as we got home. Since he didn’t have a fever or any other visible symptom, I thought he was just having an off day which also meant lights out for me. I was feeling unusually tired myself so I welcomed the early bedtime. About 2 in the morning I went to check on him and his room looked like a disaster scene. He had vomited everywhere. The bedding, walls, dressers and carpet. Nothing was spared. What broke my heart and still does today was that he was still sleeping in the bed. Most kids scream…”mom, I’m going to be sick”, or cry or do something to cue the unpleasant act that is about to take place or did take place. For God’s sakes when I have a stomach bug I cry. It’s the worst. Not Brian. No call, no scream, nothing. I have no idea how I didn’t hear this happening because I’m a very light sleeper so that tells you I had hit the point of exhaustion and my body shut down. I panicked. I stripped everything off the bed and threw it all in a garbage bag and put it outside for the trash. I took his clothes off, cutting off his shirt because I did not want to pull the vomit covered shirt over his head. He was crying, confused and clearly sick but I had to put him in the shower. After the shower I put him in my bed with towels and trash cans surrounding him. He fell back asleep so I started to clean his room sobbing and physically gagging the entire time. It took hours to finish but finally I took a shower and laid next to him completely exhausted. Not 10 minutes later he sat up, and vomited all over my bed, himself again and me in the process as I tried to get his head in the trash can. The clean up process had once again begun. The night was endless as were the next few days. The next week I had the worst virus I ever had, a close second to my case of shingles. Bright side…..I bought myself and Brian new bedding.
The biggest obstacle, besides the communication deficit, is Brian’s refusal to take medicine. When he was a baby I must have been able to get amoxicillin and Tylenol in him for his ear infections but at some point administering medicine to him became impossible. Like I said in a previous post, there are holes in my memory and this is one of those holes. Over the years, I’ve tried disguising medicine in food and drinks, a very difficult task when he only drinks water and eats a few foods. I’ve tried rewards and we’ve tried to overpower him with several hands on deck but he won’t have it. He screams and even if we can get the smallest amount in him he spits it out. We’ve tried all the tricks that the nurses offer and have been unsuccessful. That’s why last fall when he had Influenza B and was sick for 2 weeks I was actually a little relieved because he did not need an antibiotic. The high fever he had was scary and miserable and awful for both of us. A dose of Motrin would have been so helpful. A typical 14 year old would have taken a fever/pain reducer, but not Brian. His refusal to take medicine makes any illness so much worse. It was a long two weeks and I’m not sure how we got through, but we did and that is all that matters
If you read my last post then you know our summer began with strep throat. With no prior indicators, Brian woke up one morning screaming and holding his neck. He didn’t look good, he was pale and his eyes were bloodshot and glassy. We took him to the doctor and somehow they were able to culture his throat which indicated he had strep. The poor kid may have been suffering with strep symptoms for days but I was unaware. The diagnosis meant off to St. Clair Hospital’s infusion center for an antibiotic injection. It took several people to hold him in place and we were warned that the injection is more painful than typical shots. The whole ordeal took hours. The injection is described as “one and done”. It’s all he needed to clear up the bacterial infection. Well… as our luck would have it, it didn’t and towards the end of our vacation I could see him going down again. I’ll spare you the weekend details, a trip to urgent care and my nervous system in overdrive but on Monday morning we were back to the pediatrician then back to St. Clair infusion center, several hours of waiting and injection number 2 was administered. It’s been 14 days since injection number 2 so I think we are in the clear.
This post is making me think of the final Sopranos episode because there is no tidy ending. I wish so badly I could say we’ve mastered this problem and checked it off our long and involved “to do” list, but that is wishful thinking not allowing me to lend some positive insight into my final thoughts. This is a tough one and has been an issue for years. The reality is Brian will get sick again and I will become unhinged in the process. I’ll pray it’s nothing I can’t handle and once the illness runs its course and me into the ground, it will get pushed away in my memory bank and we will start another day.
Bring on the hand sanitizer.
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