The stages of diagnosis grief

After Nate was diagnosed with moderate autism (CARS score 43.5, for anyone interested) in March of 2007, I think my husband, Jon, and I went through a semblance of grief–some stages much quicker than others. But while Jon’s stages were pretty close to the classic denial, anger, bargaining, depression, and acceptance, I had my own, Katie-specific way of dealing with the diagnosis. My stages were something like blame, paralysis, optimism, and action.

Blame

“This was my fault. I probably could have prevented this had I just known what to do or what not to do.” These were definitely some of my thoughts. I also felt some anger toward the pediatrician who had discounted my concerns about Nate’s development many months prior.

Paralysis

One word I kept using to describe myself those first few months was overwhelmed. Not only had our son just been diagnosed with autism, but two weeks later, our second child, Lucy was born.

Lucy born April, 2007, a month after Nate was diagnosed
Lucy born April, 2007, a month after Nate was diagnosed

So now I was navigating the new waters of the world of autism, transitioning from having one child to having two, stumbling through sleep-deprived days, taking Nate to therapies, and still trying to be a good mom. I felt barely able to stay afloat some days.

Birth050

Although I had already heard about many of the additional therapies my autism-mom friends (at the traditional therapy centers) had tried for their sons (mB12 shots, chelation, hyperbaric oxygen, changing diet, special doctors), they all sounded too difficult, too expensive, just too overwhelming. I wasn’t ready.

Optimism

However, in the midst of my paralysis and inability to make big changes right away, God worked in my heart from the beginning (really, from before the beginning!). I wrote this a couple of weeks after the diagnosis:

God is stretching me. Becoming a mother has been one of the most rewarding and most difficult things that has happened to me, opening my eyes to my weaknesses and selfishness but also to my strengths and ability to love. Through Nate having autism, I know God is going to grow me in areas I still struggle: worrying too much about what others think, having too much pride in and placing too much importance on my children’s accomplishments/intelligence/”impressiveness”, being too impatient.

I did not wallow. While I might have felt overwhelmed at all the options and therapies and costs and “things you have to try,” I still trusted in God’s plan for Nate’s life.

Action

I usually respond to difficult situations with research. As I came out of the sleep-deprived fog of Lucy’s newborn months, I was also able to overcome that paralysis and get myself in gear. I researched. Yes, I read about going gluten-free/casein-free, but I did not think that would be possible for Nate. Instead, I read all about digestive enzymes, particularly this book. I studied up a lot on vaccines, especially because I wanted to figure out what to do for Lucy. Then I ordered all those enzymes and got started. (Full post on what I learned about enzymes here.). We definitely saw some small improvements!–after, of course, a horrible couple of weeks of regression (increased meltdowns and tantrums, fewer attempts at language and communication, more stimming) spurred by those enzymes. After those couple weeks, though, things seemed to improve, with fewer meltdowns and generally improved flexibility (not so averse to change in routine, etc.). I was encouraged. And I kept researching.

This post is part of the 31 Days writing challenge, during which I’m detailing our family’s journey through autism as it relates to the one lifestyle change we made that had the greatest impact on our son’s recovery: nutrition. Click here for a list of all this month’s entries as they are posted.

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