I’ve heard that life’s not fair, and from time to time, it’s not. Life is full of worry, pain, and fear… and you’re not exempt from any of it. And having a child with autism, can double and triple that worry, pain, fear and every other emotion under the sun. It’s interesting because although many children on the spectrum have a set routine, you never really know from one day to the next how things are going to play out. Some parents have their own emergency aid kit ready for any and every possible turn of events, but ironically sometimes what you planned for does not exactly match the catastrophe at hand. So, like me on yesterday, you sit in a puddle of tears wondering what went wrong? Is there a U-turn to make things go back to the order we’re accustomed to? With all my configurations, plan of action and Mommy instincts, how did I miss the boat? The unpredictable got the best of me and now I feel lost and unaware.
I stayed up until about 3:00 in the morning. I cleaned the kitchen and did laundry, and then laid down on the sofa. I wanted to be in close proximity of Callie’s room. He’s been sick lately. For many parents, if your child is sick, you may check on them once or twice during the night, but then you retire for the evening, believing morning will be better than the day before. For us, autism and sickness do not mix well. Retire for the evening is unheard of. Checking on your child only once or twice is a dream come true. I’m literally on pins and needles because my son cannot fully communicate his source of pain. For the past week or so, he’s been telling me “I’m not sick.” Red nose. Puffy cheeks. Hoarse voice. Watery eyes. Low grade temperature and laying down more than usual. It was clear that the opposite of his statement prevailed. Maybe he was scripting “I’m not sick” because he heard that line from a cartoon and he was using it appropriately in response to me asking “What hurts, Callie?” Or maybe he knew the outcome would be visiting a doctor, which would interrupt his routine and that fact alone can cause uneasiness. In any case, his dismissal of his symptoms was heavy in the house. I could deal with that. Going to the doctor without his approval — I can deal with that too. I was cool with hearing a diagnosis of a severe sinus infection because I kind of expected it. However hearing that he had an accelerated heart rate was something that totally threw me. “Your son’s heart beat is faster than normal. What medicines have you given him lately?” “DayQuil and Tylenol Cold,” I replied “The decongestants you gave him are ones that could cause his heart rate to be accelerated.” All my mind and heart absorbed was “The decongestants you gave him…” The rest of the sentence was omitted. What I gave him….what I administered – played over and over in my head. In a flash, guilt embraced me as if this was a proud moment, and shame felt compelled to start knocking down, bit by bit, any confidence I had as a mother. This news may not be a big deal to most parents, but for a parent with a child with autism or any special needs, it’s devastating….especially when your child is unable to convey what he’s feeling. I felt wellness leave my body and considered the doctor checking me out as well. All thoughts and instincts were suddenly at a halt. Everything went hazy. For a minute, autism was not the problem. In my head, all roads of failure led to me. I was determined when I got home with Callie that I was going to be focused. I gave him an antibiotic, as the doctor prescribed and with my additional responsibilities to my other 3 children, I still managed to stand guard when it came to Callie. This was a new pill and watching him was a priority. I laid on the sofa that night so I could hear every move Callie made. I even looked in on him every 30 minutes to an hour. Nothing. Thank God! I did good! But the morning came with an unexpected bang….. As I am getting ready for the day, I hear a couple of coughs….not too bad….faint. Still, after yesterday’s news of “what I gave”, I thought this was not a time to guess if he was ok. The odor of urine and vomit combined welcomed me with open arms before I even got to his room. I turned on his light, even though I didn’t need to. I knew the scene quite well. Laying on his back. Mouth, neck, cheeks and pillow drenched in vomit. Bed sheets and clothes soaked from pee. I sobbed…not because of what I saw, but because of what I didn’t see….what I didn’t hear. I didn’t see my son coming to get me. I didn’t hear him calling my name. I didn’t see him running to the bathroom to release everything hurting in the toilet or the sink. I didn’t hear him cry or moan. I would have accepted a script line of some sort. Zilch. I wept because my son is 13 and he’s never gotten out of bed to tell me that he’s sick. All I’ve ever known is his own response to pain, which includes laying down and not knowing how to communicate what’s ailing him….but resting in comfort that eventually I will come. I wept because the second I left the room was when he needed me. Even though I’ve been here before and the sight, smell and sound should have been easier to swallow — it’s not. Every time is like the first time. Cleaning up my teenage son as if he was a toddler is never a piece of cake. I look into his eyes wondering what he’s thinking, but only silence fills the air, making my heart grieve for better. The truth is as they grow older, the concern does not lessen. Reality hurts, and your conscience can play tricks on you, thinking that once again you’ve messed up. You should have been there to catch the first cough. You shouldn’t have left his room. Or you get the occasional reel of memories of your child being sick playing before you and an automatic replay button has already been set.
I stood in the bathroom cleaning Callie’s face, crying. He has me on height now, so I’m looking up to him, praying my best is good enough. His eyes looks down to mine and he says, “Why you crying?” I couldn’t talk. I gave a weak smile. He then says, “It’s ok, Mom” and the room fell mum again. It’s ok. In that moment, it didn’t feel ok, but his words rang loudly. It shook me. I then realized that autism parents don’t see themselves as heroes, but we do feel like we have to save the day. Who else will do it? Who else will care? We take on the responsibility of nurturing, protecting, and providing very seriously. But in trying to do it right every time — when something does not add up or falls apart, we place an “L” on our forehead, because we feel like we have not been successful at what has been placed in our hands. We put so much pressure on ourselves that we fail to remember that we are human. We’re doing the best we can. We won’t always get it right, and guess what? We cannot control everything. I’ve learned to take one day at a time on this journey, but this week, I’ve also learned to not crush myself in the process. I don’t think our children are looking for perfection. They’re looking for love and for someone to just be there. I know there are going to be times that I may miss the boat, but it doesn’t make me any less of a parent to strive and do my best….as well as, swim as fast as I can to get to the boat I missed.
Thanks for listening,