Autism · Grief · Parenting

Grieving My Child’s Diagnosis

When I was in high school, I learned about Elisabeth Kubler-Ross’s Five Stages of Grief (the stages we go through when we are processing a significant loss or change). It was part of an assignment for a speech I was working on in debate class.

Denial, Anger, Bargaining, Depression, and Acceptance

I still have them memorized. One of the things I remember learning about these stages, even from way back then, is that the stages aren’t linear. They come and go, sometimes replacing each other, sometimes co-existing – but the one thing that remains throughout all of the stages?

Hope.

When I first learned my son’s diagnosis, I was not surprised. I was, however, overwhelmingly grieved.

I knew it meant more help, more options, and better treatment for my son – and in that sense, I was relieved.

But that first night, lying in bed, trying to sleep…the only thing I could see was this –

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My son as a baby.

My little love.

All my ideas and hopes and dreams…I spent so much time those first few months, nursing and rocking him, sometimes all night long, to help him soothe and finally sleep.

In those late nights, almost twelve years ago, I used to imagine him as a teenager. I used to dream of him running into the kitchen in his baseball uniform, and kissing me on the cheek, before heading out again to all of his friends.

That memory – not the actual dream, but the memory of dreaming the dream – was what first brought on a wave of grief that I cannot appropriately describe here.

Grieving My Child’s Diagnosis

In writing this, I fear I will not honor my son, the way he is made, his brilliant brain, and all the other that comes along with it.

I love him, just as he is. I am so grateful for him, all of him.

So how can I use the same stages of grief to describe the time frame following his diagnosis, as one uses to describe a death?

Because the dreams, the ideas that I had about how it would be, and how it should be – those did die.

And I am grieving. It’s of course not the same as losing someone close to me, but it is grief just the same.

My mother’s heart had no idea what was in store when the doctor first said autism.

No matter how much I love and accept my son, there are still very real, very human, deeply brutal emotions that I feel, as his momma.  And these emotions have often perfectly been illustrated in how we process grief and loss in general.

The Five Stages Of Grief Following My Son’s Autism Diagnosis

Denial

This stage has plagued me for years. Even before the diagnosis, I played the “He is not as behind as so and so’s son,” or “So and so doesn’t wear shoes or socks either,” game. When it finally came time to actually be evaluated for the diagnosis, I think I was already pretty practiced in this. Unfortunately, this stage is one I find myself muddling through even today.

For example, I still question his diagnosis from time to time. I KNOW that it is true. I am completely aware of all of the traits my son displays, and the fact that he is benefiting from treatments specifically designed for children with a spectrum diagnosis (a sure sign that he does, in fact, have one). But I still find myself wondering sometimes if maybe the doctor made a mistake. Maybe I just made too much of it, or my son is just going through a really bad, really long phase.

But I still find myself wondering sometimes if maybe the doctor made a mistake. Maybe I just made too much of it, or my son is just going through a really bad, really long phase.

It is not rational, y’all. Not at all. It is denial. And it persists even years after first seeking an evaluation.

Anger

This stage is tricky for me. My husband is better with the anger stuff. He feels angry at the situation and at the fact that we have to accommodate so much. My anger is much more indirect, and passive aggressive. I am angry at the world sometimes, for not understanding my son. I am angry at my husband sometimes, for not understanding my son. I am angry at the kids his age at the park, who do not understand my son. I am angry at the lady staring at him in the mall when he is flapping his hands and trying to cope with the noise, and the man behind the counter rolling his eyes at him as he tells him all about how to best carve a beef tenderloin.

I am angry at the world sometimes, for not understanding my son. I am angry at my husband sometimes, for not understanding my son. I am angry at the kids his age at the park, who do not understand my son. I am angry at the lady staring at him in the mall when he is flapping his hands and trying to cope with the noise, and the man behind the counter rolling his eyes at him as he tells him all about how to best carve a beef tenderloin.

So, I think it is fair to say I am randomly and sporadically angry.

I think it is also fair to say that this anger is often misplaced, as it is simply part of my processing and moving through these stages.

Bargaining

Oh man, this one is weird. For me, this sounds like, ”

For me, it sounds like, “If we just get him occupational therapy, then everything will be fine,” or “If we could just find the right social skills class/peer group/hobby then everything will ease up.” Now, the beginning of both of these statements is true. My son needs all of these things, and they will help him. But falling prey to the idea that somehow these things will “fix” it – classic bargaining.

Depression

I feel sadness just typing this part. Besides denial, this is where I have been mostly likely to find myself post diagnosis. I just get stuck sometimes. Not feeling bad for my son,

I just get stuck sometimes. Not feeling bad for my son,

Not feeling bad for my son, just feeling bad in general. I tend to feel complete despair, like no matter what I do, or how hard we try, it’s just not going to get better. I know it is not true. I have seen the crazy progress my son is capable of. I am learning about so many adults who struggle with some of the same things as my son and still live wonderful, productive lives.

And yet sometimes, I just don’t want to get out of bed and do it all over again. I don’t want to clean up another post-meltdown disaster, I don’t want to worry all day long if he is going to eat something, yell at his brother, and throw something at me in the car. When I am in this stage, I don’t want any of it.

The good news is that I have found what picks me up, every single time is taking a breath and just doing the next thing.

Just one thing.

Whatever it is – making the bed, giving my son his meds, switching the laundry, taking a shower. I do the next thing and then somehow the next one seems a little bit easier. If I am still struggling, I might text a friend and let her try to cheer me up too. (By the way, my friends are really good at this – they have actually video taped Disney Princess dolls singing to the tune of Let It Go this verse – “Let it Go, Let it Go. Keep those yoga pants on today. Let it Go, Let it Go. In your bed it’s fine to stay.” I have found it difficult to be depressed when the Disney Princesses are encouraging your deep passion for yoga pants. It’s not possible. We need friends like this! If you don’t have one, connect with a momma on our Facebook page. Send her a message. Tell her you need something to smile about today. Or message me. I will forward you what my crazy friends send me!)

Please also allow me to say this –  If you are seriously depressed and have not been able to find ways to overcome the overwhelming sadness and lethargy, there is NO SHAME in seeking help.

This is a marathon life we lead, complete with combat soldier stress and crazy diets and never any sleep and constant vigilance.

There is nothing, and I mean nothing, wrong with reaching out for medical attention – depression stage or not.

Acceptance

I have dipped my toes into this phase quite a few times. It’s kinda awesome.

For me, these are the days, even when they have been tough, where I sit down at the end of the night and think, “That wasn’t so bad. This is a pretty good life.”

It’s moments when I see, really see the impact that my son has in our world and all the good that this is doing in us.

It’s the days when we all have fun, despite the crazy and sometimes even because of it.

It’s me choosing to write this blog and be that momma, putting it all out there because it is simply who we are.

And the best part?

Hope

Because the study was right. The one thing that remains, no matter how angry or sad or crazy I feel?

It is always hope.

The hope that my son will grow into exactly the man he is supposed to be.

The hope that my family will one day look back and see how this all worked together for good.

The hope in that no matter what happens, I will always, always, always adore this child.

I will always, always, always be his momma.

And no diagnosis could ever take away that incredible blessing.


 

For more information about being a parent learning to live with their child’s autism diagnosis, please take a look at my new book – Everyday Autism. (affiliate link)

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4 thoughts on “Grieving My Child’s Diagnosis

  1. Thank you for saying what I haven’t been able to put Into words. Thank you for expressing that it’s okay to go through the different stages multiple times even though I’ve been dealing with it for years. And yes even if I am in the bargaining stage a lot, it’s because I will never lose hope.

  2. My son has also been diagnosed recently, and I have felt all of the above. I thought it was wrong to feel this because my son can still walk and communicate and feed himself, and in the scheme of things that could be wrong with him, high functioning autism is not the worst thing that could happen to him. Yet I have felt overwhelming grief and worry about his future and probably depression about the life that he may lead and how others will view him and treat him. I want him to have the full life including a fulfilling job, friends and a family of his own that his sister will have. It hurts me so deeply that he may not have all of that, or that he may he hurt by the way people might treat him. But I try to be positive and optimistic, and will I am on this earth I will try and make my son as independent and self reliant as I can, so when I can no longer stand in front of him and take on the world for him, he will be able to do it for himself.
    I have been so glad to have found your site as it has given me hope that there is a way forward for my family and my son. Thank you

  3. Shawna, it feels to me like an incredible privilege to hear you articulate with such insight what it’s like to be you — because you speak the truth for yourself and for so many others. I often identify with you even though my situation and challenges are different. It is hard, but so GOOD to go through these stages — not to be stuck in denial (think of all the parents who never quit trying to make their kids conform to those dreams . . . the dreams we ALL have).

    And really those are our choices — to stay in denial, or to live in reality, as painful as that is.

    I can’t help being your cheerleader, because you are beautiful and courageous — it takes courage to always, eventually, fall back on hope. And that gives me hope, as I live with these people (my kids, my husband, myself!) who are not as I would have made them — but are as God did. Love you, Shawna!

  4. I stumbled on this post kinda by accident…I’m a mental health professional…I teach these stages to my clients…yet I did not see them this clearly in myself as a result of my sons needs. Thank you for sharing so eloquently. Holding on to hope…

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