Confession: I’ve had this post sitting in my drafts folder for months. I’ve added to it, deleted from it, prayed over whether I should post it– and now, here we are.
Today, we are going to talk about a very real component of the Autism parenting journey: the stages of grief after your child’s diagnosis.
Go with me here for a minute– we’ll come full circle, I promise. Next month, Scarlett has an appointment to complete the ADOS, one of the formal Autism diagnostic tests. We’ve pretty much been given a clinical diagnosis already (when you hear hoofbeats, think horse kind of thing), but they wanted to wait a little while longer for the ADOS.
I’ve lived this blog post already, and to be honest, I’m still living it. But after her appointment next month, my guess is that I’ll start this cycle again. Apparently, it’s common for parents of newly diagnosed children to go through these stages– a fact that made me feel a lot less crazy after I figured that out. What I was feeling and what I was experiencing wasn’t unique to me– it was totally normal.
There’s 5-7 stages of grief, depending on what you’re reading. For me, they didn’t necessarily come in order, I found myself bouncing between stages fairly often, and there have been times where I’ve experienced several stages at once.
A friend of mine has a child recently diagnosed on the spectrum, and I debated whether or not to disclose to her that this was my experience. It’s truly a vulnerable thing to admit, but I would’ve given my right leg for someone to have told me upfront that this was what I should expect after Scarlett’s diagnosis. I’m sure there’s some out there who can say that this was not their experience (and major kudos to them)– but it’s common enough that I think it needs to be talked about. People are becoming more accepting of Autistic children and the Autism community in general (as they should– neurodiversity is a beautiful thing), but I’ve found that there is very little information out there in terms of understanding the journey of a parent of a child with Autism– hence this blog. If I can make even one other parent feel a little less crazy in their journey or help even one other human give support to a parent of a child with Autism, then my vulnerability will all have been worth it (and trust me friends, this is WAY out of my comfort zone).
Please be kind to me. I’m about to admit a lot of things I’m not terribly proud of, but I think are SO important to add to the Autism diagnosis conversation, which is why I’m about to share a lot of things I’d rather not. When we received Scarlett’s diagnosis, I wasn’t given a pamphlet on what I should expect in the upcoming weeks and months. I wasn’t told I should seek out the support of the Autism parenting community, who could’ve told me immediately that I was about to experience legitimate grief– and a lot of it.
So without further ado, the stages of grief as I experienced them.
When we first started EI in Denver, Scarlett was about 13 months. Our behavioral therapist there told us that at that point, she did not feel like S fell onto the Autism spectrum due to her social abilities. And friends, I clung to that. At the time, my aunt sent me a well-meaning text offering Autism as a possibility of something to look into in the future, and I admit that I blew her off (sorry, Aunt Jen!), because that would not be my child. So even when we got to California and it was brought up as a legitimate possibility in Scarlett’s very first therapy session, I again immediately dismissed it as an option. There was no way that this was going to be my child, and no way that this would be my life. But as it continued to be brought up more and more and diagnostic appointments began to be scheduled, I began to bargain.
In the days before Scarlett’s diagnostic appointment, I did a lot of praying. I prayed that if God would do X, then I would do X. If God made my child “normal”, I would be a better mom. I’d take my kids to the park more and spend more time in the moment. If God made my child “normal”, I’d be a better wife. I’d be a better encourager to my husband and do more to build him up. If God made my child “normal”, I’d be a better Christian. I’d study my bible more often and be a part of all the works I could. I realize that none of this was rational, but there is a lot of irrationality that happens in a mom-brain when you feel like something is happening to your child that you can’t control.
Fortunately, this stage was brief– because for me, it was among the most difficult. Thankfully, it only lasted for only a few days after her appointment. Friends, I was so angry in the days following Scarlett’s diagnosis that I think I’ll need to spend the rest of my life praying for forgiveness for how I acted. I was angry with everyone: at God, at my husband, at my kids, at the guy that cut me off on the road– I couldn’t escape it. Everything made me fly off the handle. At one point, I remember my jaw physically aching because I was constantly clenching my teeth in anger.
See, I told you I moved back and forth! After my few rage-y days, I settled back into denial. Not necessarily denial that there was something wrong, but denial of the diagnosis itself. To this day, I’m still not ready to rule out the possibility of Lyme. We weren’t able to treat it when it was first diagnosed, so how much of this (if any) is Lyme, and how much of this is Autism? I don’t know that that’s something I’ll ever know the answer to. But again, here is visible proof of my denial. I am still slightly in denial that this could be Autism and Autism only.
After some more time in the land of denial, I hit depression, and I hit it hard. I have spent quite a bit of time in this stage. I’ve struggled with depression off and on since I was 19, and by now, I’ve gotten pretty good at managing it (aka hiding it) whenever it does pop up. This time, though, I couldn’t shake it. I spent so much time questioning God, because I didn’t understand why he would do this to me. I’d been through enough in my lifetime, why this? Years spent battling depression, abusive relationships, sexual assault, self-harm– all of these things were apparently not enough. I questioned God and, after making me endure all of that, why he would now add a special needs child to the mix*.
There was a day where I remember walking with my kids, and Jaxon went to try and hold Scarlett’s hand. My boy has a BIG heart, and he absolutely adores his sister. But she pulled her hand away from him, like she often did at the time (she’s getting better about it now). Friends, I will tell you that trying to console my sobbing four year old who was convinced that his sister did not love him was among the most difficult moments in this Autism journey thus far. I was absolutely heartbroken and felt like I would never escape that feeling. I was so horribly sad that it was difficult to find the energy to get up and function. My house was a mess, laundry piles were everywhere, I felt like canceling all of Scarlett’s therapy appointments and never picking them up again–those feelings of sadness and apathy lasted way longer than it should have. It finally got to a point that I couldn’t manage the sadness anymore…it was affecting every facet of my life.
When I realized that, I went to the doctor and was prescribed medication. My husband, my kids, my parents, my brothers, and my friends deserved more than what I was giving them. I deserved more than what I was able to give myself. I am brave enough to admit that this is what I need right now to keep myself in the right headspace–let’s be the generation to end the stigma of mental health (especially within the religious community**), shall we?
*Friends, I’d like to add this here: God didn’t “do” any of this to me– that’s not how God works. He allowed me to go through it, sure, but he didn’t “do” any of it to me. Shoot me a message if you want to talk God– I’m all about that life.
**I’ve seen/read/heard a few Christ-professing people say that those struggling with anxiety, depression, suicidal tendencies, etc. just have a lack of faith. If only they had more faith, there would be no place for these feelings. If they prayed more, all of those feelings would go away. Friends, no. That is so not a thing, and while I think that the current trend is an understanding of that fact, we still have some room to grow.
And now I stray slightly. The next stage should be acceptance, but I’m not there yet. So, I’m going to make up my own stage:
I wish that I could say that I am now at peace with Scarlett’s diagnosis, five months after receiving it. But truth is, I’m not. “They” (the community of Autism parents who are further along in their journeys) say that that day will come at some point, and there will only be brief moments (or periods) of sadness. But for now, I am not there.
For now, I tolerate Scarlett’s diagnosis. I tolerate the therapy that comes with it. I tolerate the disruption that therapy schedules cause our family. I tolerate the hoops I have to jump through to get my daughter the services she needs to thrive. In short, I tolerate Autism. There is no alternative.
Regardless of my current tolerance, I’m in a happier (and healthier) place mentally, I am striving once more to be content in all circumstances, and I am finding the joy in life again. I know that regardless of what label or diagnosis is placed on her, I have a beautiful little girl to do life with. She is smart. She is funny. She is tenacious. She is brave. She is shy. She is fierce. She is stubborn. She is snuggly. She is loved. She is everything I prayed she would be and so much more.
An Autism diagnosis is not the end of anything. Have I grieved (and continue to grieve, at times) the loss of the life I thought I would have? Have I grieved the loss of the simplicity of life before Autism? Sure, but isn’t that life? Life is constantly changing and evolving, and we have to adapt to whatever comes our way. I may have had to change my way of thinking (which was incredibly difficult), but I have come to the conclusion that no matter what comes along, we will be okay. There has already been impossibly difficult days, and I can guarantee there will be more– but I know that our family will be okay. We will figure out a way to make it okay, because we have no other choice. We are parents, that’s part of our job.
All that said– God’s plan is better than mine. It has always been better than mine. As I said earlier, I know that no matter what comes next, we will be okay. Sean and I will be okay, and Scarlett will be okay. And on the days where we are not okay, I know that we are surrounded by people who are ready to help bear our burdens.
Another friend of mine posted a quote by Philip Yancey (no lie–no idea who that is) on Instagram that happened to be exactly what I needed to read on the day she posted it, “faith is trusting in advance what will only make sense in reverse”. I do not understand why this happened to my child. I do not know why Autism rates are on the rise. I do not know what life holds for me, for my family, for my child–but it will make sense some day. Whether the answer is something as personal as increasing my faith in God’s plan or something more than that, there will be a day where I look back and understand this better than I do right now.
To come full circle, I write all of this because I think it’s SO important for people to realize that parents are so very fragile after their child’s Autism diagnosis. Being aware of how deeply a parent may be affected is the first step in finding the right words to say after a parent makes their child’s diagnosis public. When we made Scarlett’s diagnosis public, some of the responses I received blew my mind–and not in a good way. Awareness is the first step to change, and changing how we approach, support, educate, and encourage parents of Autistic children (and their support networks) is SO necessary.