78: Grieving the Life Not Lived

You are listening to episode 78 of The Autism Mom Coach, Grieving the Life Not Lived.

The Autism diagnosis is like a death. It is the death of our expectations about how we believed our parenting experience would be and how we believed our child’s life would be. This death is a real loss and one that we need to acknowledge and grieve so that we can move towards acceptance and joy. Unfortunately, this is a topic that is so often overlooked by the parents who are experiencing it. Maybe it is because you believe you are not justified in feeling grief for a child who is alive or that you just think I don’t have time for this, my child needs me.

Whatever it is, I am here to tell you that your loss is real and your grief deserves a place at the table and you deserve to be seen and held as you navigate the experience. This is why I’m going to dedicate the next few episodes of the podcast to grief. I know this doesn’t sound too exciting, but I promise you, it will be helpful in shining a light for you in how grief is showing up in your life and how you can better support yourself through the process without getting stuck in it. Stay tuned.

Welcome to The Autism Mom Coach podcast, I am your host, Lisa Candera. I am a lawyer, a life coach, and most importantly, I am the full-time single mother of a teenager with Autism and other comorbid diagnoses. I know what it is like to wonder if you are doing enough or the right things for your child and to live in fear of their future.

I also know that constantly fueling yourself with fear and anxiety is not sustainable for you or of any benefit to your child. That is why in this podcast I will share practical strategies and tools you can use to shift from a chronic state of fight, flight to some calm and ease. You are your child’s greatest resource, let’s take care of you.

Hello, everyone and welcome to another episode of the podcast. I am going to spend the next couple of episodes of the podcast doing a deep dive into the topic of grief. This is something that we all experience as parents raising children with Autism, whether we realize it or not. In fact, this topic does not get the attention it deserves because, for one thing, I think most people associate grief with death, and you may be one of those people.

You may be grieving in ways that you’re not even aware of because you only think of grieving as something you do when someone passes away or a relationship ends. Another reason the topic of parent grief is passed over is because we believe we don’t have time to grieve. The clock is ticking and we need to help our kid so we ignore the oxygen mask and hyper focus on our child and helping them, which, by the way, may be a symptom of the grief you are experiencing and a way of avoiding your own pain.

I remember when my son was diagnosed and this was 13 years ago, I went to the Autism Speaks website and I downloaded the workbook, it was called The First 100 Days After the Diagnosis. And I remember breezing by the sections on the stages of grief thinking I don’t have time for this. I just need to know what I need to do for my kid, and I need to get started doing it right away.

If this sounds familiar to you, I invite you to stay tuned to the next few episodes where I am going to talk all things grief to bring awareness to the fact that you may be grieving in ways you do not even realize. And how staying stuck in this grief is actually preventing you from arriving at true acceptance of your child’s diagnosis and standing in your way of enjoying your parenting experience.

Alright, so let’s get started. Grief is a natural response to loss, any loss, not just death, the loss of a relationship, the loss of a home, the loss of a job, the loss of your expectations. You expected life to go one way and it went another. That’s loss and the grief that you feel around that loss is real. And I don’t think we give this type of loss the respect that it deserves because again, we associate grief with death and maybe we feel uncomfortable grieving for a child who is alive or maybe we feel like it’s a betrayal somehow of our unconditional love for our child.

And then maybe we tell ourselves things like, you have no right to grieve. You should be grateful. At least your kid is alive or whatever it might be. And yes, of course we are grateful that our children are alive but this is actually a way that we can use gratitude against ourselves. Because what we are really saying is, I don’t have the right to grieve this. And I am here to tell you that you 100% do.

The diagnosis of Autism is not a death, but it is the death of your expectations, the expectations of the neurotypical parenting experience, the expectations of the kind of life your child would live and the kind of experiences that you would have with him or her. And yes, there is so much joy in raising our children and in achieving milestones that we were told were a never or a no way, so much joy. And there is a lot of pain. Maybe your child doesn’t speak, so you never get to hear her voice unless she is crying.

Maybe you imagined bonding over sporting events and your child has zero interest. Maybe you imagined long conversations or going shopping or going out for lunch dates, and again, your child could care less or this is just not something they’re comfortable with, and it’s not something that you get to do together. Maybe you assumed your child would understand or care about birthdays and holidays and they don’t and you miss this bonding experience with them.

Maybe you are mourning the fact that you will never attend a high school graduation or a college graduation or take prom pictures. All of this is a loss. And on top of all of this, I think one of the biggest things we lose as Autism parents is ease and certainty, the ease and certainty of believing your child will talk, they will potty train, they will make friends, they will learn fractions, they will get invited to parties, graduate and get a job.

Before Autism, we just assumed that our kids would do all sorts of things with usually minimal effort. And whether that was true or not, we had beliefs about all kinds of things without having proof that they would ever happen but this belief created feelings of ease and certainty for us. So before or without an Autism diagnosis, we would probably be less stressed, less hypervigilant and less likely to view every potty accident, tantrum or awkward friend interaction as evidence that we are not doing enough, our child is falling behind and that they are going to have a miserable future.

We just viewed all of this as a normal part of parenting and a normal part of our child being a child. That ease and certainty dissolves pretty quickly when your child receives a diagnosis of Autism, which is the very definition of uncertainty. We just don’t know at the age of two whether or not our child will ever speak, we don’t know. We don’t know whether or not we should be saving for a 529 plan or an able account.

We don’t know if they will be able to do the activities of daily living without substantial assistance, we just don’t know at that point. And this is all a loss. And a loss, just like a death needs to be grieved. That is because grieving is the gateway to acceptance, true acceptance. And true acceptance, radical acceptance goes beyond we have a diagnosis and an IEP, it goes beyond attending the Autism walks, wearing a ribbon or a puzzle piece or whatever it is this day. All of that is surface level acceptance.

Radical acceptance is much deeper work, but it can never happen if we are not allowing ourselves to grieve in the first place, if we are not allowing ourselves to acknowledge the loss to begin with. That is why it is so important to recognize that this diagnosis is a loss, if that’s true for you. I mean, if you were expecting to have a child with Autism and this was all part of the plan, then this doesn’t apply to you.

But if you were not fantasizing about early interventions, speech therapy and IEP meetings while you were pregnant then this probably does. So this is why it is important to check in with yourself and to be honest with yourself about what you are experiencing. So many of us disregard our own emotions. So many of us numb ourselves out to our own emotions so that we can take care of our kids or that we can avoid the real pain that we are experiencing.

And again, yes, you can do that. That is something that you can do, but it’s not a solution or a strategy that works, not for the long term. It will catch up with you and so that’s why I’m encouraging you to take a look at the thoughts and the feelings that you are having around the diagnosis. To do that, I’m going to give you a few questions to journal about.

First, what do you wish was different and why? Second, what did you imagine your parenting experience would be like and how is it different? Third, what did you imagine your child’s experience would be like and how is it different? What things did you imagine doing together that you either don’t do or it takes a lot or so much more effort than you ever imagined? Journal on these questions so that you can stop carrying this heaviness inside of your body, put it on paper and let it live outside of you.

And most importantly, remind yourself that there are no wrong thoughts or feelings. Sure, there are things that we think and feel that we might not announce on Instagram or our annual holiday card, but that does not make them wrong or you wrong for having them.

Alright, that is it for this week’s episode. Next week we are going to talk about grief myths and how they may be standing in your way of processing the emotions you are feeling and how dismantling those myths is a step towards acceptance of your own experience. In the meantime, if you are struggling to accept your child’s diagnosis, whether they are 2, 12 or 22, I can help you with that.

In my one-on-one coaching program, I provide clients with the space and tools they need to get out of pain and experience real joy in their lives even when they don’t look the way they had imagined. To book your complimentary consultation call for my program go to the show notes or my website under Work With Me. We will talk about your struggles and whether it makes sense for us to work together. Alright, I will talk to you next week. Have a great week.

Thanks for listening to The Autism Mom Coach. If you are ready to apply the principles you are learning in these episodes to your life, it is time to schedule a consultation call with me. Podcasts are great but the ahas are fleeting. Real change comes from application and implementation and this is exactly what we do in my one-on-one coaching program. To schedule your consultation, go to my website, theautismmomcoach.com, Work With Me and take the first step to taking better care of yourself so that you can show up as the parent you want to be for your child with Autism.