I decided to watch a TV show last week instead of staying up late on the internet like I have been doing. I’ve spent too many days focusing on What Isn’t and What Hasn’t when I would be better off concentrating on What Is and What I Can Do About It. While attempting to change my ways I planned on reading non-autism related literature, cleaning my house with a little bit more effort and watching a TV show every now and then just for fun. That all sounds easy to do – relax and enjoy the here and now. But, after years of concentrating on Ronan’s needs and how it’s affected our family, it’s hard to walk away and just let go.
Try as I might, baby stepping into a calmer state with more peace-filled thoughts is where I hope to be one day. That’s hard to do when little things remind me of just who I’ve become as Ronan’s Mom. Take that TV show for instance. The night I decided to call it a day, to stop reading, to reduce the fretting and the overanalyzing, I turned on a show and hoped to quietly melt into the couch. I did for a little while until the plot took a turn. The topic: death and dying. Great. I had hoped for something a little more upbeat and was now face-to-face with despair. I decided to keep watching though and settled into what I thought was going to be an hour’s worth of mindless distraction.
As the show continued, a character quoted Elizabeth Kübler-Ross and the Five Stages of Grief. Hearing those stages hit me. They hit me hard. So much for relaxing, I thought. Instead of paying attention to the rest of the show I was thinking about Ronan, wondering about his life and also brainstorming this post. I contemplated Kübler-Ross’ model. It suits more than just for those who have suffered a loss through death. The five stages, although not always experienced by every individual, nor followed chronologically, made sense to me. As the parent of a child with special needs, especially knowing that my child was typically developing for a period of time, it does fit the criteria of a terminal loss. I should note it’s not so much the physical death of a child I was reflecting upon because thankfully my son lives and breathes. But his abilities and his disabilities remind me daily of loss, loss of what he can do and what he can’t do. Sadly, our community has witnessed deaths resulting from issues with autism. But my original thoughts about Ronan’s great needs and of what could have been, and later what should have been had I known more – yes, those. They exist. They are true. They are real. They are unfortunate. And for many, these issues could have been prevented.
Knowing some of the struggles, pain, unfortunate situations our children have to deal is part of daily life. The worry, frustration and questioning we do now is because of what happened. How we as parents handle those emotions certainly plays a role in how we protect our child and who we let in to help. Here are the stages of grief I imagine other parents go through once their child has been diagnosed and now live with autism:
Denial – The parent thinks it’ll be fine. It’s a temporary setback. A glitch that’ll smooth over. Their child is just a little delayed, but he’ll catch up. I know this. I know this because that’s what I heard when Ronan started his decline. But, what I was seeing wasn’t a decline. It was more than that. His body was growing weaker, filled with toxins, struggling to handle the load. Systems misfired. Health took a turn for the worst. But, he’s a boy. Just wait it out, Mom. That next milestone is just around the corner. He’ll be fine. See that, doctors play the denial card, too.
Anger – It’s not basic anger and then you get to blow it off. It’s sheer frustration. Frustration at the medical community. Fury toward their child’s educational options (which for some shouldn’t be termed “education” because it’s anything but). Feelings of devastation linger. Then they are accompanied with four-letter words that are flung like poo at people and practices that should never be allowed near another child ever again. Thoughts of Oh, no! Now what? What will I do? swirl through parents’ heads. The worst thought that sends them reeling? It’s the thought that comes with the discovery that some (or much) of what their child is suffering could have been prevented. That hits them like a ton of bricks: ARE YOU KIDDING ME?! But with this reaction comes another. Sure the parent feels the brunt end of the effects of autism - the financial aspect, the family upheaval, the physical struggle, the emotional breakdown. But what the parent feels pales in comparison to what their child is experiencing - losing their speech and other bodily functions, having to sit through hours and hours of therapy and appointments, being told what to do when, where and why because the child no longer has the ability to make logical, safe or healthy decisions. Yes, that anger stage is a doozey and carries a great weight. It’s one that can last a long, long time because the damage done to the child can take years to reverse.
Bargaining – Please, oh please, oh please fix this. Let me be the one who has the child with a miraculous recovery. Let my child be the one who goes from severely disabled to top-of-the-class valedictorian. I’ll do anything: HBOT, RDI, ABA, MMS, OT, PT, ST, IVIG, PECS. You name the acronym, and I’m all over it. I’ll do it. I’ll do it well. I’ll do it all, I promise. Just please, please oh, please take this away. Make it stop. Make it better. Or, give it to me – give me the apraxia, the diapers, the ugly stares from strangers. I’ll take it all if it will make my child whole again, please. Please. Please!
Depression – Where to begin? I think this is where the denial, anger and bargaining stages all come together and blow up simultaneously. It happens during a child’s worst meltdown. It starts the moment a very unsuccessful IEP meeting ends. Depression lurks in dark corners waiting on its prey knowing that anything can go wrong. When something does go wrong, depression swoops in and multiplies sadness, fear and defeat by at least ten thousand. Depression nags us and rags on everyone else. It seethes hoping to snag another into the depths of despair. It brings us to the lowest low causing us to fall down in our tracks. It gives us no desire to get up and go; and we’re okay with it. Yep, depression is a dark and dismal place. The worst part is that the depression stage has yo-yo factor: depending on how your child is doing, you could return right back into depression. One minute you’re up and the next you’re dangling by a thread. How we scoot up that thread, if at all, will determine how long depression lasts.
Acceptance – This is the hardest one. Well, for me at least. Sure I can accept the fact that Ronan was normal. Yes, I accept that he received some preventative vaccinations that were supposed to work to help his body didn’t. Absolutely I can accept that I watched his development decline. I can also accept that I was mislead by medical professionals I formerly trusted. I do accept the fact that I was ill informed by people who confidently made a one-size-fits-all decision for my child (“Okay, so today Ronan is going to get the following vaccines….even with the ear infection we just diagnosed. Yep, no worries, he’ll be fine…Mom, stand right here…hold him down…there, all done. Don’t forget to give him that antibiotic. Oh, and that Tylenol, too!”). I accept the mistruths. I accept the damage done by others not just to my son but to thousands of children. I accept the rubbish spewing daily about vaccines and how safe and effective they are said to be. I accept that too many people still don’t know enough about vaccines. And, I accept that it’s my duty to educate them with Ronan’s story because at the rate our vaccine schedule doth grow, more children are at risk to falling onto the spectrum.
Yes, I do believe I’ve experienced some of those five stages. I know I’ve worked through some of the grief only to be thrust back into it when Ronan has a setback. Depending on the situation, and subsequently the outlook I have for whatever Ronan is dealing with, I can ping pong from one stage to the other. I have learned how to deal with some of my emotions because after Ronan perseveres, so does my attitude. But, until Ronan is more abled and knowing that he has to go through a lot more work to get to that point, I know I will still have the hardest time with acceptance.
The acceptance stage is the one that makes me the most worried and the least confident. Fear of Ronan’s future should he fall ill, or worse die from complications because of autism, rule the outcome of that stage. That stage won’t be complete until I stop wishing I had known more, or stop wanting to turn back the clocks or stop being so determined to tell others that they could have a better chance than I. I have accepted a lot of things in life, much too many to list, but I will never accept that what happened to my child and what started his potentially life-long, debilitating, devastating developmental issues are allowed to be acceptable for the greater good. Never.
Cathy Jameson is a Contributing Editor for Age of Autism.