You are listening to episode 82 of The Autism Mom Coach, Creating Internal Safety: Nervous System 101.

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 the podcast. I hope you are doing well and I’m so glad you’re here. Last week we talked about the spectrum of grief. And I plan to do a few episodes where I talk about the various emotions that we experience during our spectrum and how they specifically relate to Autism parenting. But before I do that, I want to teach you how to create safety for yourself in your body, in your nervous system to feel any emotion. Here is why that’s important.

We tend to avoid, resist or push down difficult emotions because they scare us, the feeling actually scares us. And once our body feels afraid, our brains kick into overdrive, feeding us more and more thoughts that create more and more anxiety, fear, stress, worry, whatever it is in your body. I want to teach you how to understand this, slow it down and resource yourself so that you don’t have to be afraid of your own emotions. You can have them, you can process them, and you can take care of yourself.

To do this, we’re going to start with nervous system 101, which is really generous, this is not even 101, but bear with me. This episode is an important one, one that you should probably listen to more than once. That is because understanding the nervous system is like unlocking the inner workings of your body’s control center. The nervous system is the operating system, always playing in the background. It plays a vital part in how you think, feel and respond to the world around you.

Now, up to this point, I have talked a lot about the self-coaching model that I use in my coaching program. And I did a whole episode about this early on in the podcast. It’s episode six and I will link it in the comments, but I’ll also give you a recap right now. As a reminder, there are circumstances in the world, life happening, neither good or bad.

So things that are circumstances are things like your age, your marital status, your child’s diagnosis, what someone said to you, what somebody posted on Instagram, your past, what other people do or don’t do, what other people think. These are all circumstances, things that you can’t control and things that don’t cause you to have any emotions until you have a thought about them. Something happens, you have a thought about it and those thoughts create feelings in your body.

Your feelings fuel your actions, whatever you do and don’t do and the outcome of your action and inaction are the results that you have in your life. Well, before we even have a thought in our brain to create a feeling in our body there is a nervous system. Our nervous system, through our senses of sight, sound, smell, touch and taste, detects and relays messages between our brain and every part of our body.

So before you even have a thought, your nervous system has made some determination about what you’re seeing, hearing, feeling and it’s sent signals to your body. So before you even have a thought about something, your nervous system is sending information. The nervous system is the foundation of all of our lived experience. It’s where everything begins. The nervous system works in service of our survival, it’s constantly perceiving and interpreting information in the world.

This perception is constant and automatic and it’s always happening below the level of our conscious thought. So before we even have a thought, our nervous system has assessed the situation and has sent signals to our brain and our body about whether we are safe, whether we need to get out or fight or whether we just move into disconnection and disappearance and shut down.

To better understand the interplay between what is happening in our nervous system and what we are consciously experiencing, I want to talk a bit about polyvagal theory. I just want to give you a little bit of information about this framework to help you better understand your experience. And the polyvagal theory and the visualization of the nervous system ladder has been so helpful to me and to my clients.

So what is polyvagal theory? Polyvagal theory was developed by Dr. Stephen Porges and it is a theory of the nervous system that helps us understand how our nervous system responds to stress and safety cues in our external environment. Polyvagal theory describes our autonomic nervous system, which means automatic and autonomous as having three distinct states, each associated with a different state of arousal and response to stressors.

So I want you to picture a ladder as I talk about these three states. At the top of the ladder is ventral vagal, next, in the middle is sympathetic, i.e. fight flight, and at the bottom is dorsal or shutdown. For each of these states, I am going to describe what they look like. And I’m going to do this using my own nervous system mapping. Yours might look different, of course, because we all have different nervous systems.

Each state of the nervous system has its own somatic experience, how we feel the emotions in our body and it has what I’m going to call its own playlist, that means the thoughts that you think when you are in that state. So, for instance, when you’re in ventral, you have certain thoughts that you don’t have when you’re in sympathetic or when you’re in dorsal and vice versa. And so just think of each of them has a playlist and those playlists can’t be played in the other states, it’s basically impossible.

The playlist in each of these states is automatic in that it just triggers the default thoughts we think when we’re feeling calm or when we’re feeling threatened or when we’re feeling overwhelmed. Knowing your somatic experience and what your playlist is in each of these states is a great way for you to identify where you are. And the reason we want to identify where we are is because that gives us the ability to figure out how to get where we want to be. It’s like a map, you have to know where you are first in order to figure out how to get to where you want to go.

Okay, so let’s start at the top of the ladder, ventral vagal. Now, this is our home. This is where our nervous system feels safe and connected. This is where we want to be. So imagine a state where you feel safe, relaxed, and socially engaged, your heart is steady, your digestion is working smoothly. You’re able to connect with others and communicate and you experience positive emotions. When you are in ventral, you have perspective.

You’re able to see the big picture and you feel connected to yourself and other people and the community. And importantly, when you are in ventral, you are your most rational and you are capable of your highest level of thinking using your prefrontal cortex, which enables you to reason and plan. I’m going to give you an example of my playlist in ventral and I’m also borrowing from a few of my clients because it’s part of my practice for all of my clients. We map their nervous systems so that they can become familiar with how they show up depending on how they’re feeling.

So some of the thoughts from ventral, Autism is challenging but I can do this. My child will be okay. We will figure this out. She is happy. I don’t want her to be someone else. We are not alone. We have support. We are loved. I’m a badass. This is ventral. It doesn’t mean that life isn’t challenging, but you have a different perspective. You feel connected to others and you feel safe.

Now, let’s move just a little bit down the ladder to sympathetic, this is fight flight. So for so many Autism moms, this is our home away from home unfortunately. We are very familiar with this state. So what is sympathetic fight flight activation? Well, when you are faced with a threat or a challenge or a perceived threat or a challenge, your body switches into action mode. Your heart rate accelerates, your muscles tense up and are ready for action and you become alert and focused and ready to fight or flee.

In addition to the physical changes that we experience, our perspective changes quite dramatically. We go from open and social and engaged and safe to hunkering down. Our focus narrows, we no longer have perspective. Our thinking becomes all or nothing, always never. It’s us versus the world. When we are in fight flight, our rational thinking goes offline and we are reacting from our survival brains.

So some examples, some examples where you might be triggered into your fight flight. IEP meetings or even the thought of them. A phone call from the school. Stares from people in public. Seeing your child struggle to connect with other children. Not knowing why your child is upset or how to help her. Comparing your child to neurotypical peers. Any and all of these circumstances can activate our fight flight response. And when our fight flight response is activated, our focus narrows, our bodies speed up, our thoughts speed up, and we feel the need to act.

So let me share with you some of the thoughts about Autism and Autism parenting when we are in fight flight, again, sharing from personal experience with myself and my clients. No one understands. It’s not fair. I hate Autism. Autism makes everything harder. Autism stole my baby. It should not be this hard. People are judging me and my child.

Now, think about yourself in a fight flight state where this is your playlist and let’s just say that somebody walks up to you and says, “But remember yesterday when you said you could figure this out”, and gives you some of your examples of your ventral vagal playlist. And you’re like, “Oh, no, I have no time for that.” Even though the thoughts are thoughts that you’ve had in the past and even thoughts that you believe, when your body is in that state of biological activation, those thoughts are not available to you.

Alright, last but not least, let’s move down to the bottom of the ladder. This is dorsal, also known as freeze or shutdown. So if a situation becomes overwhelming or inescapable, your body may enter a shutdown state, your heart rate slows down and you might feel numb, detached or disconnected. Entering the dorsal or shutdown state is your body’s way of conserving resources when it perceives that neither fighting or fleeing is possible.

I actually just had this experience with my cat today. I had to take her to the vet for some bloodwork and getting her into that carrier is a job and she fights it every step of the way. She runs and she hides and as I’m actually picking her up to place her into the carrier, she’s yelling. She’s scratching me. She’s putting her paws out wide, so I can’t actually fit her body in until I finally stuff her in and I close up and she almost goes dead.

And even when we get to the vet’s office, they take her out and they put her on the table and she doesn’t move. She doesn’t make a sound. It’s like she’s playing possum. So she went into full on fight flight but when she figured out that there was nothing else she could do, she was like, “Okay, I’m here.” And it seemed like she just gave up. That’s dorsal, it’s like I’m done. I think dorsal shows up in an interesting way for Autism moms.

I’ve had the experience so many times of white knuckling it through days, weeks or months, and then the smallest of things can cause me to crumble into a crying and inconsolable mess. Dorsal can look and feel a lot like depression, giving up. It’s not rational, it’s emotional. So some of the thoughts from the dorsal playlist. I can’t. Nothing works. I’ve done everything. Nothing I do matters. This will never end. It will never get better. It will always be like this.

My personal experience and the experience that I’ve had with so many of my clients is they basically live in fight flight most of the time and it takes a lot to get to dorsal, but when they go dorsal they go full in, but maybe you go right to dorsal. There’s no judgment here, it’s whatever your experience is. But that’s why mapping your nervous system is so helpful, because it just really gives you a look into your own operating system.

So again, these emotions aren’t happening to you, these reactions aren’t happening to you. They all make perfect sense from a biological standpoint. So once you get familiar with how you experience these three states of the nervous system response by identifying the physical and emotional and the cognitive experiences that you are having.

Once you know what’s happening, it’s almost like you have the ability to then pause and course correct, or at the very least, notice what’s happening from the biological perspective, takes out so much of the shame and judgment we have of ourselves for our own reactions. However you are reacting makes perfect sense on a biological level. And although it makes perfect sense, maybe there are some ways that you react that you don’t want to and you want to shift.

And having this awareness is really part of the process of understanding, hey, for me, when I’m in the no one understands, this isn’t fair. I am deep into some fight flight and that is my cue to myself to reset, to give myself a break. And so for you, the more familiar you get, you’ll become more aware of your cues that tell you, I need to slow down, I need to take a breath, I need to take a time out. And by doing this there are a lot of benefits.

First, stress management, by recognizing the signs of your body’s stress response you can learn to activate the ventral vagal brand, the safe and connected through relaxation techniques, mindfulness and resourcing, which we will talk about in the next episode. Another benefit, improved communication. Being aware of where you are on the ladder and where other people are on their ladder can lead to more effective communication.

When you know that you’re in a state of ventral then you are better equipped to empathize, to listen, and to connect to the people around you. But when you notice that you are in fight flight or that your child is in fight flight, you can remind yourself that this is not a time for a teachable moment for either of you. Think of all the conflict you could avoid by knowing when to engage and when to release the reins. By understanding your nervous system more, you can do that.

Another benefit, self-regulation, knowing how to shift from a state of fight flight to ventral can help you regulate your emotions and your reactions in challenging situations. This can improve your decision making process and your problem solving abilities, so this is all to say that understanding your nervous system, understanding your operating system is like the keys to the kingdom.

Our nervous system is constantly working below the level of our conscious awareness. So by mapping it and understanding it, we are bringing conscious the unconscious and when we do that we have so much power to shift our own experience. Instead of being driven, we can be the driver.

If this is something that interests you, you are ready to nerd out about this and map your nervous system, time to schedule a consultation call. This is what I do with my clients as part of our process. Understanding your nervous system and your reactions is really the key to shifting your experience. So whether you’ve been listening to me for a minute or you just got here, if you are interested in shifting your experience of Autism parenting, from constantly being in fight flight to actually experiencing joy in the present moment, this is what I help my clients with in my one-on-one program.

You can schedule a consultation call on my website, under show notes and we can get started right away with helping you feel better and step into your power as an Autism parent. Also, for those of you who are intrigued by the nervous system, I have linked a worksheet in the episode notes and this is from my polyvagal intensive training with Deb Dana that gives you a visualization of the nervous system and the three states and describes to you some of the thoughts, some of the emotions that you might be having in each of the states, similar to what I described today.

You can print that out for yourself and start to get curious with yourself so you can start creating your own internal map. Alright, I hope you enjoyed this episode, I hope it was helpful and we will be talking about this a lot more in the coming episodes. Take care and I’ll talk to you next 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.

You’re listening to Episode 81 of The Autism Mom Coach, The Grief Spectrum. 

Welcome to The Autism Mom Coach podcast. I am your host, Lisa Candera. I’m a lawyer, a life coach, and most importantly I’m the full-time single mom to a teenager with Autism and other comorbid diagnoses. I know what it’s 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 the podcast. I am so glad you’re here, and I hope you’re doing well. I am recording this episode and the next couple of episodes on the day of my son’s 16th birthday. Oh my goodness, all of the feels. Disbelief, wonder, sadness, fear, love, pride, admiration, shock, the whole spectrum of emotions, which is exactly what I want to talk to you about today as it relates to grief and loss. 

Like I said before, I don’t like thinking about grief in stages. I don’t think that that paradigm is helpful or really even applicable to our experience as Autism parents. I like to think of our experience more like a spectrum, and how appropriate, right? Because one day or minute you could be feeling fine, even hopeful. Then the next you are hit smack in the face with some reality that stings. 

That does that mean you are starting the grieving process over like a board game where you are steps away from the finish line, and now you have to go back to square one. These ups and downs and our emotions are all part of the process of grieving a continuing loss. 

That is why for us, parents raising kids with Autism, I like to think about grief as a spectrum comprised of a variety of emotions. Any emotion that you feel related to the loss of your expectations related to your child’s diagnosis or even related to the victories you achieve as you advocate for them, and you work ten times as hard to achieve, and you and they work ten times as hard to achieve what most kids do with minimal effort. 

All of these emotions are part of the spectrum of grief that we experience throughout our journey. Emotions like fear, shock, denial, guilt, despair, anger, resentment, loneliness, acceptance, pride, empowerment, and hope. All of these emotions are part of the grief spectrum. 

Now I want you to remember, grief is a very individualized experience. So you may feel some of these emotions and not others. That is perfectly normal. Remember, you can’t grieve wrong. There’s no wrong way of doing it. Your experience is your experience. It’s 100% valid. 

Whatever you are feeling as part of this process, I want you to remember that all of these emotions that you are feeling in your body, all of them, are caused by one thing, and one thing only. That is the thoughts in your brain. You have a thought in your brain, and that thought creates a feeling in your body. 

When you understand this and when you live your life like this is the fact of the universe, which I believe that it is, this really enables you to bring curiosity and compassion to the emotions you’re experiencing versus judgment and resistance. This is the path to creating safety for yourself to experience any emotion, even the painful ones. 

In upcoming episodes, I am going to teach you how to create safety for yourself to feel any emotion. But in order to do this, you one, need to recognize that you’re having an emotion, and you want to bring some curiosity about the thoughts that are creating that emotion. 

Now in terms of this spectrum of grief and all of the emotions that we experience as Autism parents, all of these emotions, again, are caused by whatever thoughts we are having in our brain. So as our thoughts shift and change throughout the week, throughout the day, throughout an experience, so will our emotions. 

This is important to know because, again, your emotions don’t come out of nowhere. I know sometimes it feels that way. That’s why I really encourage you to bring more curiosity to the emotions you’re feeling in your body so that you can uncover the thoughts that are creating them. The better you get at this, the more you become the watcher of your mind. 

So let me give you an example of experiencing the full spectrum of emotions in an experience that I had with my son. So this was in the winter of 2020 right before COVID hit. My son wanted to learn how to ski because he wanted to go on a ski bus. He wanted to be with his friends, and he wanted to be part of the group. I was so excited that this was his idea, but I was also really nervous. 

First of all, my son is really rigid, or was, really rigid about homework. So he viewed homework like a caveman viewed a hungry lion. He would get home from school, and he would start doing his homework immediately. It was almost like somebody running through a burning building, doing it quickly while screaming the whole time. 

He had so much nervousness about having something hanging over his head that as soon as he got home, he needed to start doing it. I would never even schedule doctor’s appointments after school because that, in his mind, interrupted his ability to get his homework done even faster. It became very stressful. 

So when he said he wanted to do a ski club, which is exactly after school which meant he wouldn’t be doing his homework until later in the night, I was really nervous about is he really going to follow through? Or is this just going to create even more chaos in our evening?

I was also nervous because most of his friends have been skiing for years. He had never been on skis to this point. So I was wondering is he going to have the commitment to follow through. As I’m sure you can relate, there are so many things over the years that if he showed even a slightest bit of interest in it, I went all out full in. Then sometimes these things will only last minutes, days, if that, right. Sometimes these things just wait and last. 

But in any event, I was excited that he had self-initiated this, and I was willing to go all in with him. So we went to the local ski mountain, and we signed up for ski lessons. As we quickly found out, the regular ski lessons were not adequate for my son. They were very fast paced. There were several people involved. 

Even if you got a one on one instructor, they just had a really different style where they weren’t breaking things down to the level that my son needed. He definitely needed more one on one attention and people who just had the level of patience to provide him with the reassurance and would know how to interrupt some of his perseverations.

Well, luckily, the mountain that you’re at is actually serviced by an adaptive ski club. It was called Strides. Now it’s called Summit. They are amazing. They’re ski instructors who volunteer to teach people with disabilities, whether they are physical, emotional, mental. Whatever it is, they will teach you how to ski from the ground up. 

So I was so grateful. I was so excited. I signed my son up for the lessons with this program. We were so lucky because they actually had a spot for Ben. They don’t have many spots, and they had a spot for Ben. I was so excited. I decided we would just double down on this for a few weeks. If we did that, he would be ready for the ski bus. All good, right?

Until they told me the price difference between the adaptive ski lessons and the regular. It was a pretty big jump. It was a big investment. Well worth every cent, but still Ben had started and stopped so many things before that going all in on skiing, I mean it is so expensive. I justified it to myself in every way because he’s not doing travel, soccer, basketball, baseball, any of that. He’s never done any other sports. This was the thing that he was into. He was showing interest, and it really had the potential.

So we’re going all in. But in addition to feeling gratitude that this program existed, I also felt frustrated because everything in special needs is more expensive. Then on top of feeling the gratitude and their frustration, I felt the fear. What if he doesn’t go through in this? I will not get this money back. So that’s a lot of money to invest. 

So for this one decision of deciding to sign up for ski lessons, there was gratitude, frustration, and fear all at once. So then the lessons began. It was amazing to watch. My son going down with two instructors by his side. They had straps, they had harnesses, and they worked with him for hours and hours over the weekend. 

In not too long of a time, he was gliding down the mountain on his own. Now, it was a little bunny mountain, but he was doing it, and he was able to stop. The pride I felt for him. I was just so proud of him. I was so excited. I was in tears. This was so huge. 13 years for my son to find his sport, all of the work, all of the effort, all of the hope. This was life changing. It had such a huge impact on his self-concept. So it lit him up, it lit me up. All good, right. 

It was until we got into the lodge. So after the lesson, my son comes into the lodge, and he is in line waiting for food. I say I’m going to go, and I’m going to scout out a table. So while I was doing this, I saw four of his classmates, and they were together, and they were laughing. One of them told me that they had been dropped off by one of the boy’s parents, and they were all there together for the day. 

My heart sunk. The first thought I had was this will never be Ben. It will never be that easy for him, or for me, to just drop him off with his friends and let them go about his way. I was feeling a lot of jealousy and sadness at the same time, and some fear because I’m like oh good, Lord. If Ben sees these boys, he’s going to want to ski with them. He can’t manage the trails that they can, and they’re not going to want to go on the bunny trail. 

I’m playing out this whole dynamic in my head that never actually happened. When Ben came over to the table, the boys were so sweet to him, and they were congratulating him, and they were cheering him on. In that instant, my fear went to just such love and appreciation for these kids and for their kindnesses, and hope for my son of having really good friends and having these experiences. 

So by the time we actually sat down for food, all of these emotions that had been shifting and changing and building throughout the day, I was a mess. I was just crying. So I excused myself to the bathroom. I just cried. I wasn’t happy. I wasn’t sad. I was just a little bit of everything. 

There’s not a stage for this. This is just the human experience. All of these different emotions in one day. It was a lot. It was overall just a really good thing. It was a good experience. But it was just so clear to me like how tightly I was holding to his experience and making sure he had a good experience, and how much fear that I had around him and his experience, and all the different experiences that we had had over the years building into this one day. 

So I let myself cry it out. But then I was trying to explain to a friend later on like yeah, I was in the bathroom crying. To explain why I was crying, to explain why I was having all of the emotions that I was having, the answer is the thoughts that I was having. Autism, skiing, ski lessons, my kid’s friends. None of those circumstances caused me to have the emotions that I was having. It was my thoughts about all of them. 

My thought we are so lucky this mountain has lessons for special needs kids created the feeling of gratitude. My thought everything is so much more expensive caused me to feel frustrated. My thought he is crushing this, he is so resilient created feelings of pride and joy. My thought that his friends might not want to ski with him created sadness. My thoughts that he’ll never have a day like this with friends or things are so much harder for him caused sadness. My thought that these kids are supporting Ben caused gratitude and love. 

This was the spectrum of emotions I experienced in just a few hours, all related in some way to the loss and grief of parenting a child with special needs. This is what I mean by the spectrum of grief. The variety and variability of the emotions we experience on any given day. 

All of these emotions are created by the thoughts we are having. These thoughts, the sentences in our brains are the interpretations that we have of life happening. Part of working through our grief and our loss is the ability to recognize that when you are having an emotion, there is a thought that is creating it. To recognize this thought and to be kind to yourself. 

This is how you process the emotion. This is how you experience the emotion versus staying stuck in the emotion. This is a topic that we will talk about a lot more in coming episodes. But for now, I want you to start to become aware of the spectrum of emotions that you experience related to your child’s diagnosis, your child’s experiences, or your parenting experience, and validate those emotions as part of the ongoing process we all experience in our unique experience of grief and loss at Autism parents. 

I really think that once you become more aware of the thoughts that are creating your emotions, the more aware you will become of the grief and the loss that you’re experiencing that maybe up until now, you didn’t even realize. Because let’s face it. 

It’s a lot easier to be frustrated that things cost a lot of money or to be angry or to compare and despair. It’s a lot easier to do all of those things than to get in touch with like the actual loss and the actual grief that we are experiencing. So get curious with yourself. Be compassionate towards yourself, and get under the hood a little bit of your experience and see what you find.

All right, that is it for this week’s episode. As always, if you are struggling with your emotions, if you are resisting them, if you are being controlled by them, I can help you with that. You can schedule a consultation for my one on one program, and we can figure out whether it makes sense for us to work together. All right, have a great week, and I will talk to you next.

Thanks for listening to The Autism Mom Coach. If you’re 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 ah-has are fleeting. Real change comes from application and implementation. 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.

You’re listening to Episode 80 of The Autism Mom Coach, Ambiguous Loss.

There are losses where life dramatically changes while staying exactly the same. There are losses for which people do not send sympathy cards or flowers. This does not make these losses any less real. It makes them more painful. The Autism diagnosis and life parenting a child with Autism is one of those losses. Stay tuned to learn more. 

Welcome to The Autism Mom Coach podcast. I am your host, Lisa Candera. I’m a lawyer, a life coach, and most importantly I’m the full-time single mom to a teenager with Autism and other comorbid diagnoses. I know what it’s 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 the podcast. I am so glad you’re here, and I hope you’re doing well. I am recording this podcast on September 2, which is exactly 10 days from my son’s 16th birthday. In fact, this episode will air the day after he turns 16. Right now, in this moment, my biggest wish for my son’s 16th birthday is that he is accepted to a residential program that can help him. 

Never did I ever imagined that that is what I’d be wishing for my son’s 16th birthday. I had plans for when he turned 16. I thought we would actually take a trip abroad. He was always fascinated by France and Germany because of his interest in World War II. I thought this would be the perfect time to do that, a high school student, 16, going abroad. How amazing would that be? Yet, we can’t really walk five steps out of our house these days without overwhelming anxiety and OCD derailing us. 

I’m at the point where we’ve done so many things. This time last year, we moved to Rhode Island for four months for an intensive OCD program. We tried a boarding school in Utah for children with moderate Autism that only lasted eight days. Then from that point on, my son’s been hospitalized for the bulk of the last six months, which has been excruciating. 

Excruciating in a way that I can’t really describe because on one hand, it was a bit of a relief due to the safety issues. On the other hand, this is my child who I adore, who I love, and who feels lost to me. The stages of grief don’t really even begin to describe this roller coaster of emotions of living with a child, raising a child, advocating for a child who was still alive, obviously, and who you want so much for and still accepting where they are in this moment. 

For me, this has been a really difficult journey because I really thought that my son was higher functioning than he actually is. That is because he quote unquote looks that way. Or I should say he looked that way. We used to get he doesn’t look autistic before, but I’ll tell you we don’t get that anymore because of the severity of his anxiety and his perseverations at this point. But for a long time, he looked better than he actually was. 

So coming to terms with how severely impacted he is and acting on that information has been really difficult. Although I accept it, it still hurts. I still feel sadness and anger about how hard everything is for him, about how he seems to be imprisoned by his own mind, and how I’m unsure of my own safety around him because of his low impulse control and the fact that I’m his person. I’m the primary caregiver. 

Life with Ben has always been challenging, but I never imagined it would be like this. With all of my focus, all of my hyper vigilance on him, I really rarely thought about my own experience. Until about a month ago. I was on one of many calls with an extended team that included my son’s educational consultant slash clinician. 

During that call, she referred to me as a grieving mother. This stopped me dead in my tracks. Am I grieving? What am I grieving? As I thought about it, the answer was obviously yes. But up to that point, I had been so busy being on doing everything that I could for my son that I never even realized it. I was and I am grieving. 

So one thing led to another, and I was googling all of the articles and all of the studies that I could find about grief. None of them resonated with me. They all involved what I would crudely refer to as a more concrete loss. A death, divorce, loss of a job, and lots of talks about the stages of grief. First you’re angry, then you’re bargaining, then you land somewhere in acceptance. 

Again, this really just did not resonate with me, with my experience of raising a child who you’re working so hard for. Accepting their limitations but at the same time you are trying to work for them to be the best version of themselves. At the same time, realizing that this is not what I expected, or I signed up for. Like I thought parenting would be much different than this. A really complex set of circumstances that really I don’t see captured by the literature on grief. 

So as I dug deeper though, I came across the work of Pauline Boss, and I will link this in the comments, who wrote a book called Ambiguous Loss. This theory resonated the closest with me as an Autism mom. Although it still falls way short, I think, of what our experience is, but it does give voice to some of the ambiguity that we experienced grieving the loss of a child we expected to have and, at the same time, raising the child that we do have, wanting to accept them the way that they are, and at the same time holding out hope. 

All right, so let’s talk about what ambiguous loss is. Ambiguous loss is grief with no definitive boundary or closure. Boss coined this term from her research on families of soldiers who went MIA after the Vietnam War. So unlike the families who knew that their kids had been killed, the MIA families were essentially frozen in unresolved grief because they never truly knew if their loved one was gone, or if they would ever just walk through the door one day. 

So as Boss was doing this research, she realized that this limbo of loss was not limited to people who were physically missing. It also applied when a family member is physically present but emotionally absent. So for this, she looked at people with Alzheimer’s, dementia, addiction, mental illness, or even a parent or a spouse that was preoccupied with work or kids. So they were physically there but emotionally absent. 

The common thread here is the lack of clarity about the nature of the loss and the uncertainty about how or if the loss will ever be resolved. So all of this makes ambiguous loss a uniquely painful form of suffering. But still with ambiguous loss of a person who is physically there but emotionally absent, you’re grieving the loss of someone that you knew, and you’re almost wanting them to be back to who they were. 

So if someone has a newly diagnosed mental illness, and they’re evolving into a different person, you want them to be the person they were before. Same thing with a drug addiction or Alzheimer’s. So you’re mourning the loss of a person that you knew, the person that you did lots of fun things with, and life as you knew it. 

But again, for us, we are mourning the loss of life being nothing like we expected it, and, at the same time, raising a child who we love unconditionally, but we’re still holding out hope for the best outcome possible. So while I think ambiguous loss is really a helpful framework for us, I want to acknowledge there’s still really nothing out there that captures our experience. 

I say this to you because I just want you to know that however you are experiencing the loss, the grief, there is no shame in this. Just because you can’t google it and find something that resonates with you, it doesn’t mean that what you’re experiencing isn’t real, isn’t valid, and that you don’t have a right to feel it. 

I will get into that more and more as these episodes go on. But for right now, I want to talk about the five factors that Pauline Boss identified when she was studying folks with Alzheimer’s and the impact of this loss on the family and why the loss was so significant. Because I think that these five factors are very much aligned with the experience that we have as Autism parents. 

So I want to share this with you just because I will say for me, the better I can understand something, the less shame there always is in whatever I’m feeling. So I always like information and frameworks and just perspective so that I can take myself out of my personal experience and see things from a broader view. I find that helpful, and I hope that you do too. 

So the five factors. First, lack of clarity regarding the diagnosis. Well, I think that this applies to Autism way more than an applies to Alzheimer’s because I think once you figure out that a person is suffering from Alzheimer’s, there’s a pretty clear trajectory. There are ups and downs, but the outcome is usually the same. Not so much for the Autism diagnosis. 

Now we know there’s no blood tests for Autism. So getting the diagnosis is not a straightforward game. It usually includes several iterations of a parent raising concerns, being dismissed, rinse and repeat. So there’s always that question sometimes even after the diagnosis is this Autism, or is this just toddler? It would be so much easier, right, if there was a blood test that was like your child has level two Autism. Then there was a printout of here’s all of the things that you can expect throughout the course of their lifetime. That does not exist. 

Number two, the difficulty in predicting outcomes. Now we’ve all heard the expression. If you have met one person with Autism, then you have met one person with Autism. This is so spot on. The presentation of Autism takes on as many different forms as there are people with Autism. So you get the diagnosis, maybe you even get a level, but the level is a blunt assessment at a point in time. It is not predictive or prescriptive. You simply do not know. 

Of course, all of this ambiguity can be amplified by the advice slash warning given to all Autism parents that we should do as much as we can as fast as we can so that our child can have the best outcome possible. 

Number three, day to day variability in functioning. I can’t tell you how many times I hear the following sentence from clients. But he was doing so well. Yes, our children have great days. We get lulled into this idea that every day should be like this. Because if they can do it some days, then they should be able to do it every day. 

I can’t tell you how perplexed I was by my son at the age of 10, seamlessly moving from New Jersey to Connecticut. But if I came home from work 20 minutes late because of a meeting or traffic, holy smokes. It was like the world ended. Look, as parents, we see other people’s kids and maybe some of us even have our own neurotypical children. So then we always have that nagging question. Is this because she is eight or 16, or is this because of the Autism?

So when our kids are inconsistent in how they handle certain things, it really makes us question is this because they can’t do something, or they’re unable to do it, or are they just being willfully difficult? 

Number four, appearance of health. We all know this one. She looks so normal. Are you sure? Maybe you’re just going overboard with all of that therapy. Yes, we all get some version of this at some point or another. Autism is an invisible disability. This creates a lot of uncertainty for parents first coming to terms with the diagnosis themselves, but then when we are deciding how to approach the diagnosis with other people, do we tell them? Do we out our child? Do we risk that our child’s behaviors will be misperceived? Do we risk the judgment? 

Number five, the loss of relationships. This happens on several levels with Autism. Maybe you are experiencing the loss of the relationship you envisioned or wanted with your child. I have clients whose children who are non-verbal. So although they know that they are connected to their child on some level, it feels more transactional and more caregiving to them because they never get to have a conversation, or they never get to have a conversation in the way they envisioned it. 

Maybe you’re experiencing the loss of the relationship you hoped your child with Autism would have with their siblings, other family members, and friends. Or maybe it’s the loss you’re experiencing about how you believed your child would participate in family events. 

You may also be experiencing loss in your relationships with your other children, family members, and friends as a result of all the time and attention spent on your child with Autism. The isolation that comes from maybe not wanting to go to certain events or take your child out in public because of certain behaviors. 

Or maybe it’s the isolation that comes from feeling like the other people in your life or in the world just don’t get it or won’t understand. All of this is a loss. It’s a lot of loss. Not one and done loss, continual loss, lingering loss. Not one and done loss, but continual loss, loss that lingers. 

So what does all this mean? Quite simply, it means you’re not crazy or alone. If you ever find yourself stuck in fear, sadness, or even rage, I am betting it is some form of loss that you’re experiencing but you didn’t have a name for it. 

That is why it is vital to name the losses we are experiencing. Naming is to recognize it, to validate it, and to remind yourself you are not alone. This is the first step in normalizing the experience. You are having a very normal reaction to a very abnormal situation. It is also a step in the direction of acceptance. Not one and done acceptance because that’s not a thing. Acceptance in any given moment for however you feel. 

When you are able to recognize and name how you were feeling then you are able to process the emotions instead of staying stuck in them. That is the key to being sad, angry, or afraid versus staying sad, angry, or afraid. 

All right, that was a lot for this week’s episode, a lot of deep stuff. So let me summarize. As Autism parents, we’re all experiencing some form of loss. You might not even realize this because there really isn’t a name or paradigm to describe the loss we experience raising a child who is alive who we are working hard for their best outcome. So it’s not loss that happens once. It’s loss that happens all of the time. 

So much of the roller coaster of emotions that we experience, I think, are actually tied to the loss that we are grieving, whether we realize it or not. We probably don’t because there really isn’t a paradigm. I think that when we think of the Autism diagnosis, we think okay, we grieve the diagnosis. But it doesn’t end with the diagnosis. That’s really just the beginning. 

So it’s not as if you get the diagnosis, and you come to acceptance about the diagnosis and then life goes on. Yeah, life goes on, and there’s still loss that we are experiencing. 

That’s how I came across this theory of ambiguous loss. Because it’s a loss that’s different. It’s a loss of somebody who is physically with us, but emotionally not, or emotionally we’re not having the experience that we imagined having with our child. That is all a loss. 

I think it’s a loss that we need to recognize. I think so many of us don’t, or we just breezed past it because there’s so many other things to do. But I think our ability to support ourselves in whatever feelings and whatever emotions that we’re having, and to realize that this is a normal reaction to a very abnormal situation is just a way for us to validate our experience so that we’re not shaming ourselves on top of everything. 

All right, everyone. I hope that you found this episode helpful, and I will talk to you next week. Have a great week. 

Thanks for listening to The Autism Mom Coach. If you’re 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 ah-has are fleeting. Real change comes from application and implementation. 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.