For some children, like my son, autism isn’t just a different way of thinking; it’s medical. From GI problems to severe expressive language delays to seizures, the spectrum of issues Ronan has are complex. Many of those issues have contributed to a bad day. The tears that roll down my cheeks on those days sting.
Learning how to handle all of what encompasses Ronan’s diagnosis hasn’t been easy. The bad days can be really bad – those pop up when we have to resort to using emergency meds to stop seizures, or when we have to call 911 after Ronan’s wandered, or when I’ve become the punching bag after Ronan has tried to but is unable to communicate his needs.
Due to Ronan’s behavior, and sometimes his seizures, days can go from bad to worse and quickly. When that happens, we cancel things – things like Ronan’s therapy, a planned outing, and attending the siblings’ sports events.
Dear Therapist, We’ll have to try, try again tomorrow…today is just not going to work out.
Hey Friends, we regret to inform you that we won’t be able to join you…hopefully next time.
Dear Coach, I hate that I can’t be there to watch the game. Please keep an eye on my kiddo for me. Ronan and I are home today…cheering from a distance.
When all is clear and Ronan is back to his usual self, we tip toe back into our schedule and into the world around us. Those are the good days.
Ronan’s good days are really, really good – when he says a word, when he doesn’t need prompting to complete a simple task, when he willingly interacts instead of pushes us away. We celebrate those and pray for more of them. Lately, we’ve had a few tough days in a row. When those days start to stack up, I find myself feeling sad and a tad regretful about how things have panned out.
It’s not the first time I’ve found myself feeling regretful.
As a new parent, I regretted not knowing as much as I do now. When I knew in my heart that something was wrong with my child, I regretted waiting to act on my suspicions. When I suspected that my son was showing signs of developmental delays, I regretted not listening to my mother’s instinct. When I was getting nowhere making sense of the types of delays that Ronan was exhibiting, I regretted not asking for help sooner. After finally asking for help and having my concerns completely dismissed, I regretted not switching doctors. After doing some more reading and searching for answers, I regretted that I let the titles of the people I was talking to intimidate me. None of that regret helped me in the moment. None of it diminished any of the worry that I was also feeling.
Oddly enough, regret fueled my next move.
Fearing that what I suspected would lead us down the road to an autism diagnosis, I knew that it was time for me to start asking different people, people who would listen, for help. Help came, but only after some of the professionals close to Ronan skirted the issue – Mom, don’t worry. It can’t be autism because Ronan is able to point to things!
He can make eye contact!
He can still communicate!
And good news, he doesn’t line things up!
I appreciated the positive outlook, but I couldn’t shake the nagging feeling that something was terribly wrong.
Consulting with a new provider, he thought whatever it was that was slowing Ronan down could be autism. But he also thought also that if we waited things out, Ronan would surprise us and catch up. I liked hearing that doctor’s reply, but I regret that I didn’t also listen to my mother’s intuition. That intuition told me to keep reading, to keep pestering professionals, and to walk away from some of the mainstream medical practices we were dutifully following. But I didn’t listen to my intuition and continued to march along to the mainstream medicine beat. Instead of boosting his health, choices I made caused Ronan’s health and development to take a nosedive. His health worsened. His skills, what few he hadn’t yet lost, deteriorated. Once Ronan’s bubbly personality all but disappeared, my doubts and the insurmountable worries I carried with me daily were confirmed. Ronan was not just walking toward an autism diagnosis. He was racing toward it.
Multiple seizures, the complete loss of speech, and bizarre behaviors that I’d never witnessed before took over. I had no idea what to do. Afraid of doing nothing, though, I went back to reading and asking and looking for help. Doing that got Ronan some of the care he needed. It also helped me begin to create a different path for Ronan and for our family.
I don’t think a day goes by that I don’t read, or ask, or look for something to help me help my son. I do that because the type of autism my son is experiencing isn’t the kind that the news portrays, or that the television shows spotlight, or that society is already aware of. Ronan has medical issues, behavior issues, sensory issues, and cognitive, speech, fine- and gross-motor delays. The help we need isn’t as easily accessible as one might think. I must stay a step ahead, so I read whatever I can and everything I can. Because at this point, he will always need life-long care. Because if I and my family don’t secure that care, I don’t know who will. Because as confident as I sometimes am, I’m scared of what the future holds.
I know I wouldn’t be so afraid of the future had I not made some of the choices I did in the past.
People tell me not to regret the choices I made. I try to take their advice. I do. But in keeping those regrets in mind, I’ve been able to use the aftermath of past decisions as learning moments. The negative consequences, as terrifying as some have been – to include an episode just a few days ago, have all been stepping stones. I’ve learned from each of them.
I’ve learned more about my child and how fragile he is.
I’ve learned how to parent Ronan better because of what happened to him.
I’ve learned more about myself.
No parent wants to find out that they’ve made a mistake, but some days, a mistake is exactly what it feels like I’ve made. Because of that choice and because of how it affected Ronan, I learned what not to do to my other children. That happened after I discovered that I had options – good ones, healthier ones. They are better off because of them.
Would I change what happened? Absolutely. A thousand times yes. And in a heartbeat. I would do anything to change the past and to leave the regrets behind. The past will always haunt me, though. Even though I can’t erase what’s been done, I’m going to use the lessons I’ve learned from the past to make the future better.
I’m going to take what I’ve learned and share those lessons with anyone who will listen. I’m going to share what I’d do better and what I’d do differently. I’m going to remind them that what happened to Ronan didn’t have to be, and I’m do my best to turn every regret of what did happen into something hopeful. Without hope, I might as well give up. But I can never do that. I don’t know too many parents who see giving up as an option. We can’t. Our kids need us too much to do that.
Cathy Jameson is a Contributing Editor for Age of Autism.