Ep #15: I Need to Live Forever

The Autism Mom Coach | I Need to Live Forever

Whether your child is verbal and capable of carrying out the activities of daily living, or has an intellectual disability and requires 24/7 care, the physical, mental, and emotional demands of caring for a child with special needs are always significant. This is why one question comes up for so many special needs parents: what will happen to my child when I die?

For some special needs parents, this question is so paralyzing that they ignore the subject altogether by telling themselves, “I need to live forever.” If this sounds familiar, you are not alone. This is definitely a common thought, but it’s not actually helping. So, if you don’t need to live forever, what do you need to do?

Tune in this week to discover what you’re avoiding dealing with when you tell yourself you need to live forever, or your child will suffer. I’m sharing how thoughts like this only serve to mask our pain and avoid dealing with a very real eventuality, and I’m giving you some way more helpful thoughts you can decide to think instead.

What You’ll Learn from this Episode:

  • How thoughts about needing to live forever first came up for me, and how they show up for my clients.
  • Why the idea of living forever is a fantasy on the surface, loaded with pain, fear, and anxiety underneath.
  • The avoidance, spinning, and inaction that I experienced when I believed I needed to live forever.
  • How to change the story you’re telling yourself, so you can take productive action, ensuring your child’s care in the future, and alleviating your anxiety in the present.

Listen to the Full Episode:

Featured on the Show:

Full Episode Transcript:

You are listening to episode 15 of The Autism Mom Coach, I Need to Live Forever. Whether your child is verbal and capable of completing the activities of daily living or has an intellectual disability and requires 24/7 care, the physical, mental and emotional demands of caring for a child with special needs are significant and never ending. Perhaps this why as early as diagnosis many special needs parents find themselves wondering, what will happen to my child when I die?

For some special needs parents this question is so paralyzing that they avoid the topic altogether by telling themselves, I need to live forever. If this is you, you are not alone. Stay tuned for this week’s episode where I will talk about why telling yourself, I need to live forever is not helpful and what you can do instead.

Welcome to The Autism Mom Coach, a podcast for moms who feel overwhelmed, afraid, and sometimes powerless as they raise their child with Autism. My name is Lisa Candera. I’m a certified life coach, lawyer, and most importantly I’m a full-time single mom to a teenage boy with Autism. In this podcast I’ll show you how to transform your relationship with Autism and special needs parenting. You’ll learn how to shift away from being a victim of your circumstances to being the hero of the story you get to write. Let’s get started.

Hello and welcome to the podcast. I hope you are doing well and enjoying the first few weeks of summer break. Let me start by acknowledging that today’s topic is a heavy one. If you don’t feel like you’re in a place to listen any further I understand. You can always come back to this episode another time. So let me just give you a bit of background. Today’s topic was inspired by a recent interview I did with my friend, Emily Wood.

She is a partner at Connecticut Wealth Management which is a registered investment advisor that provides financial planning and asset management to individuals across Connecticut and nationwide. Now, to be clear I am not offering financial advice or making any financial recommendations. I will however leave you links to Connecticut Wealth Management and the resources that I reference in this show in the show notes. So, you are free to check them out on your own.

So, Emily invited me to participate in a content series produced by Connecticut Wealth Management focused on parents or guardians of a loved one with special needs. This series includes an interview with me about how to navigate fear in special needs planning as well as interviews with a local business owner about enrichment opportunities through inclusive employment and an attorney about estate planning and special needs trust.

If you are interested in watching the interview and I highly recommend that you do, stay tuned to the end of the show where I will provide the information about where you could watch and get a copy of a free worksheet I created to go with the interview.

Okay, on to the topic for today. Almost immediately following my son’s diagnosis I started having the thought, I need to live forever. And I know I’m not alone on this one. I hear it in my clients, and from the parents in the support groups I lead at work and in the community. And of course, I see it online all of the time. So, let’s just backup a second. When we decided to have a child we knew that they would be human beings subject to all the ups and downs that come with being a human, joy and sadness, health and illness, love and heartache and ultimately, death.

Still, we had them, maybe not thinking of any of this, or maybe thinking if we love them enough and did all of the right things, or at least none of the things our parents did that they would be okay whatever okay means to you. Then the diagnosis, or diagnoses and everything changed. We no longer believed that they would one day be okay or at very least we had our doubts. So, let’s talk about this thought, I need to live forever. First, this thought is a fantasy. No surprise there. Human beings don’t live forever.

Second, this is a loaded thought, on the outside, five simple words, on the inside, painful thoughts like no one will care for my child when I am gone. No one will care for my child like I do. No one understands. My child will suffer. My child will be alone. My child will be unloved. Five words hiding a lot of grief, fear and anxiety.

Third, I need to live forever is a cover thought that enables us to cover over and avoid the pain by the thoughts lurking underneath. As unrealistic as this thought is we prefer it to thoughts like, no one will care for my child like I do. So, we use it to avoid the pain we would feel if we looked under the cover. Finally, the thought, I need to live forever, it’s just not helpful, or let me just put it this way, it’s not helpful to me. Maybe you think this and it has inspired you to be super healthy and it has set you in exactly the direction you want to go.

But this has not been my experience. What I see for myself is this thought produces a lot of avoidance, and spinning, and inaction. Now, I’m going to give you an example from my own experience. Until not too long ago I didn’t have a will. And this tormented me. I knew better. I’m a lawyer and a single mom. I need a will and I wanted one. And I also wanted to create a special needs trust for my son. But I did not want to think about the details, things like naming a guardian. I did not want to think about my son and his life without me.

My thoughts were, no one will care for him like I do. I am the only one who understands him. He will be lost without me. These thoughts created feelings of fear and anxiety. So, what did I do? Well, I avoided it for years. I told myself, I just need to live forever. It was not until I started coaching as a client that I discovered my own model and what it was creating for me. And I want to share this with you. My model was, first the circumstance which was a will. And my thought, no one will care for my son like I do. And this thought produced fear.

My actions, I did not make an appointment, I did not fill out the paperwork, I did not talk to family or friends. What I did do is I spun in fear picturing a terrible life for my son and catastrophizing about what his life would look like without me. And here was the result. I didn’t make preparations for my son’s care. So, I want you to notice this. I was essentially making my thought come true. My thought, remember was, no one will care for him like I do. And my actions were to not do anything to prepare other people for what I wanted when I’m no longer here.

I want you to notice that this result of not making preparations for my son’s care was proving my thought true. No one will care for him like I do. Well, what that was producing is a lot of inaction for me, a lot of me not making the preparations that would enable someone to maybe not care for him exactly like I would but at least to have a roadmap. When I saw this on paper, when I saw the result I was creating, what my thought and what my fear was producing for me it was a big aha moment. This thought was standing in my way of creating any measure of security for my son.

So how did I go from this model which resulted in me not making the preparations that I wanted to make, to the model that resulted in the creation of a will? First, well, instead of focusing on my default thought, no one will care for him like I do, I brainstormed some thoughts about creating a will that were more neutral to me. And the thought that I came up with was, it’s better to have a will. And this was a thought that I certainly believed and it was not so personal, not so scary, and when I thought it I felt confident.

And when I felt confident I took the productive action. I had some conversations with close friends. I made the appointment, I filled out the paperwork. I made some decisions. And I created the will that I wanted to create. I’m not saying it was easy and there were not tears because there were a lot of them. But I was no longer stuck. I was moving forward. And I felt really accomplished once I executed the documents.

So, let’s sum up. I need to live forever is a fantasy. This thought is loaded with thoughts that we find too painful to look at. So, we cover them up by telling ourselves, I need to live forever. In doing so we may also be blocking ourselves from taking the productive action we want to take to support our child and provide for their best interest. That may be a will, that may be a caregiving plan. It may be teaching life skills. It may be letting other people into your child’s life.

Maybe it’s being open and honest with your family or your friends about your struggles, about your child and coaching them on how they can be supportive now and in the future. But to do any of this you first need to be willing to take a look at the thoughts under the hood and the uncomfortable emotions they create.

If you want some help working through the thoughts and feelings you are having about financial planning, or any other decisions related to your child and how to create a model that supports you, I have a free resource I want to share. Now, I made this resource specifically for the Connecticut Wealth Management collaboration so it is specific to financial planning. But really you could use it for anything. Here’s how to get it.

So first to listen to the interview that I did with Connecticut Wealth Management go to the show notes for the link. Then to get a copy of their free worksheet go to my website theautismmomcoach.com. And after about two seconds on my website, you will see a popup to enter your email address. Once you do the worksheet will be sent to your inbox.

Okay, that’s all for today. I hope that this episode was helpful and I hope that you enjoy the interview along with the free resource. Thanks for listening and I will talk to you next week.

Thanks for listening to The Autism Mom Coach. If you want more information or the show notes and resources from the podcast, visit theautismmomcoach.com. See you next week.

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Ep #14: School Shootings and Special Needs Children: Would My Child be Safe?

The Autism Mom Coach | School Shootings and Special Needs Children

We have seen another elementary school shooting, more young children and educators died needlessly, and so many parents of special needs children are asking themselves, “What if this happened to my child? Would they understand? Would they be accounted for and safe?” If you’re thinking this, you’re not alone. It’s okay not to be okay.

These are, unfortunately, normal questions to be asking in these situations. So, I’m giving you some tips to take care of yourself as you grieve from this latest tragedy, and feel less powerless as you navigate parenting your child with Autism in what can be a terrifying world.

Tune in this week as I share how to move through your difficult emotions after a senseless tragedy. I’m sharing why we’re not here to try and feel positive about things we know are awful, why you can’t action your way out of fear and grief in the long term, and how to acknowledge your own pain and support yourself with compassion through these heartbreaking times.

What You’ll Learn from this Episode:

  • Why your nervous system might currently be stopping you from pausing so you can really consider your fears for your child’s safety.
  • The rationalizations we try to make around this happening to our children, and why they don’t help in the long term.
  • How constantly viewing the news and trying to feed your brain more information isn’t helping.
  • Why thought work isn’t about ignoring your emotions and somehow feeling good about tragedy.
  • What you can do to start processing the heavy emotions of fear, grief, and anger you will inevitably feel after a senseless tragedy.

Listen to the Full Episode:

Featured on the Show:

Full Episode Transcript:

You are listening to episode 14 of The Autism Mom Coach, School Shootings and Special Needs Children: Would my child be safe? Another school shooting and you are asking yourself, what if this happened to my child or children? Would my special needs child understand? Would they be accounted for? Would they be safe? If this is you, you are not alone. It is okay not to be okay. In this episode I am going to share with you some tips for taking care of yourself as you grieve this latest tragedy.

Welcome to The Autism Mom Coach, a podcast for moms who feel overwhelmed, afraid, and sometimes powerless as they raise their child with autism. My name is Lisa Candera. I’m a certified life coach, lawyer, and most importantly I’m a full-time single mom to a teenage boy with autism. In this podcast I’ll show you how to transform your relationship with autism and special needs parenting. You’ll learn how to shift away from being a victim of your circumstances to being the hero of the story you get to write. Let’s get started.

Hello and welcome to another episode of the podcast. I hope this finds you doing well but if you are not doing well, if you are not okay that is okay too. And let’s face it, it’s perfectly understandable, another shooting at an elementary school. More young children and educators dead. As horrifying as it is, it is not the first, or the fifth, or likely the last time we will face news lie this. With each school shooting I go back to Sandy Hook, the first shooting involving children so young, 20 first graders and six educators.

My son was in kindergarten at the time and the news just shook me to my core. I still remember the story of the teacher who hid her students in a closet telling the shooter that they were in another room. I imagined those first graders huddled close together staying quiet and hoping the shooter would leave the room. And my mind went to there is no way my son would have gotten into that closet in the first place or sat quietly for any length of time. How would he ever be safe in the event of an active shooter in his school?

If this is where your mind went, you were not alone. I have had several conversations with clients and I have seen many, many posts from special needs parents wondering the same thing. Would my child understand what was going on? Would they be able to hide? Would they understand that they needed to be quiet and still? So let’s just take a moment and pause, if pausing feels uncomfortable it is probably because you are in a stress response.

When we are in a stress response we want to move. We want to take action. This is our biology doing exactly what it is designed to do, keep us safe. When our nervous system is in a fear response, our adrenalin goes up and our rational thinking goes right out the window. We become hypervigilant to threats, constantly scanning for danger and anticipating it around every corner. So what do we do? We consume all of the news, we try to find out as much information as we can.

Maybe we look up the statistics, 50 million school aged children, about less than a one percent chance that a school shooting would happen at my school and that my child would be a victim. We rationalize, well, my child is more likely to be harmed going to or from school than at school, or she has just as much chance of getting hit by lightening or eaten by a shark. We email teachers, principals, school administrators, we ask about ALICE trainings and lockdown procedures.

And some of us, we even contemplate homeschooling. And maybe some of these actions provide a measure of comfort for a period of time. But they miss the mark when it comes to the thing we’re avoiding, and that is processing the heavy emotions we are feeling, the fear, the grief, the anger. But guess what? We can’t think our way or act our way out of grief and fear. There is no thought work solution for this, at least not one that I teach.

Thought work is not about feeling good about tragedy or rationalizing it. It is about being aware of what you are thinking and honoring the feelings that you’re having. And then moving through them, not past them. Of course you always get to choose what you think. And when it comes to a senseless tragedy like this, I will always choose to think this is terrible and to feel sad and to feel angry.

We also can action our way out of fear and grief. Yes, we can take action, like calling the teachers, talking to other parents, or working to pass legislation, or safety requirements, or whatever it is that you want to do. And while this action may ease your fear and pain a bit, it’s not the same as processing the emotion. So as uncomfortable as it is, the way forward is through.

I’m going to give you some thoughts about how to process these heavy feelings of grief, fear and sadness. First, start with recognizing, recognize your own pain and offer yourself support. This is called self-compassion, or grace, it looks like I am feeling heartbroken and it is okay. I am feeling devastated and this is a normal human emotion. Of course I feel sad about this, anyone would. Of course I feel afraid, anyone would.

Second, resourcing yourself. I want you to think of resourcing yourself as anything you can do to bring yourself into a present feeling of safety and security. Maybe this is lying on your bed, maybe it is sitting next to a loved one or a pet, maybe it is picturing someone in your life, past or present with whom you feel safe, secure and grounded. Maybe it is deep breathing or putting your hand on your heart, whatever you can do or visualize that brings you a feeling of internal safety. Then with this resource in mind or at your side, ride the wave.

I talked about this in episode eight, this is the process of allowing and processing your emotions, letting them in, feeling them and processing them through your body. Now, this does not mean you need to do it all at once. You can do a little at a time and if it becomes too overwhelming, take a break, return to your resource and remind yourself that you are safe. The work of becoming present with the emotions and processing them allows you to shift from being stuck in the emotion to moving through it.

Finally, we end where we started with tons of self-compassion. This is hard and it is okay to feel the way you do. It is okay not to be okay right now.

Alright, that is all I have for this episode, be sure to be kind to yourself this week. It matters. Talk to you next week.

Thanks for listening to The Autism Mom Coach. If you want more information or the show notes and resources from the podcast, visit theautismmomcoach.com. See you next week.

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Ep #13: Managing Summer Break Anxiety

The Autism Mom Coach | Managing Summer Break Anxiety

As special needs parents, we all love the structure that school provides for us and our kids. That is, until school is out for summer, and my son is looking at me and asking, “What should I do today?” Less support for my son as well as new and varied routines always lead to one thing: Anxiety. This goes for us as much as our children.

If you’re feeling anxious about the summer break, you are not alone and you’re in the right place. This is an especially challenging time of year for parents raising children with Autism. However, we are not at the mercy of our anxiety and there are things we can do to reset and ease the pressure.

Tune in this week to discover how to manage your summer break anxiety. I’m sharing how to reframe your anxious experience at this time of year, and I’m showing you an incredible breathing exercise, so your anxiety can lead to productive action instead of spinning in dread and uncertainty.

What You’ll Learn from this Episode:

  • Why I still find myself spinning in anxiety around summer break, even after years of experience.
  • The main worries I see parents having about summer break.
  • What anxiety really is, how we all experience anxiety in different ways, and why it is 100% normal.
  • Why anxiety is not a sustainable motivator.
  • 3 things you can do to ease your anxiety, slow down, and decide on your next steps.

Listen to the Full Episode:

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Full Episode Transcript:

You are listening to episode 13 of The Autism Mom Coach: Managing Summer Break Anxiety. If you are feeling anxious about the summer break, you are not alone. Summer breaks can be especially challenging for parents raising children with autism. Keep listening for some tips about how you can manage your summer break anxiety.

Welcome to The Autism Mom Coach, a podcast for moms who feel overwhelmed, afraid, and sometimes powerless as they raise their child with autism. My name is Lisa Candera. I’m a certified life coach, lawyer, and most importantly I’m a full-time single mom to a teenage boy with autism. In this podcast I’ll show you how to transform your relationship with autism and special needs parenting. You’ll learn how to shift away from being a victim of your circumstances to being the hero of the story you get to write. Let’s get started.

Hello everyone and welcome to the podcast. I’m so glad you’re here and I hope you’re doing well and that your summer break is off to a good start. I’m recording this podcast in late May and so as of this date my son still has a couple of weeks left of school and I am savoring every minute of it. A few more precious weeks of daily structure courtesy of the school district until school is out for summer and my son is looking at me and asking, “What should I do today?”

As you all know, summer breaks typically include less structure, less support and new routines for our kiddos who thrive on routine, who benefit from multiple supports and struggle with transitions and new routines. And even though I have been doing this for 10 years give or take I can still feel myself bracing a bit and spinning with thoughts like, I can’t give him the structure he needs. I need to figure out a way to fill up his time. And I wish he could go to camp. I don’t know how I’m going to balance my son being home with working my full-time job.

I probably won’t have any downtime this summer. I hope he doesn’t regress. I hope he doesn’t resist going back to school. What will I do then? Just saying these thoughts out loud I can feel my chest tightening and my heart beginning to race. And this experience inside of my body, this is anxiety. Anxiety is a feeling or a vibration in our body in response to thoughts in our brains. We all have different experiences of anxiety. You might experience symptoms of tension like increased heart rate, sweaty palms, clenched jaws or your shoulders creeping up around your ears.

You might notice that your brain doesn’t quite work the way it normally does. You might feel unresponsive, or foggy, or like your mind is racing. Now, while the physiological experience of anxiety can be intense, anxiety in and of itself is not a problem. In fact, anxiety is a normal evolutionary response to danger, real or perceived. It is a tool our bodies developed to try to keep us alive while we were being hunted by lions. And it played a central role in human survival.

Nowadays though most of the things that cause us anxiety like the phone call from the school, or the meltdown in Target, they’re not going to kill us but our bodies react in the same way as they did to the lion sniffing around the cave. So again, while this experience is not pleasant it’s not a problem. Is a feeling like any other feeling that will come and go, that is if we don’t resist it.

But we usually resist it by telling ourselves, this is terrible and freaking out about how uncomfortable we feel. And spinning for all of the reasons, our situation is terrible and there’s no way around it and no one understands. Sound familiar? This resistance is like throwing fuel on the fire.

So instead of ebbing and flowing the wave continues to rise and rise. And as a result, you are more anxious and you are likely no closer to addressing the underlying issue triggering your anxiety in the first place. And this is because for most of us anxiety usually does not lead to productive action. It usually leads to more spinning and more anxiety.

Now for those of you who are like, “No, anxiety helps me get things done. When I feel good and scared I get up and I get going.” I’ll say this, no, it doesn’t, maybe the adrenalin gives you a boost but you were getting things done in spite of your anxiety, not because of it. And even worse, you’ve created a neural loop for this and a little reward system for yourself. Get jacked up, get good and scared, get things done. Now, this is not sustainable. And the science concerning chronic and acute anxiety shows it’s not good for you.

So, what to do, I’m going to give you three things to do when you are feeling anxious. First, notice and name. Now, I know how basic this seems but it is important for a couple of reasons. First, some of us are so used to the constant hum of anxiety that we barely notice it. So, notice it. Get familiar with how and where anxiety shows up in your body. What does it feel like? Is it tight? Is it clenching? Is it fast? Is it sweaty? Does it stay in one place or does it travel around?

Second, when we name it we demystify it a bit. You create space between you and the experience you are having. This is the difference between I am an anxious person versus I am experiencing anxiety.

Third, when we notice and name we give ourselves the chance to slow it down. And this is important because speed is an accelerant to our stress response. So even the few seconds we take to notice, and name, and explore our experience, all of this is a chance for us to slow it down. Second, allow and breathe.

The next step is to allow the discomfort and breathe into it. Again, the opposite of what we usually do. When we are resisting the feeling of anxiety we are usually holding our breath in some way and creating more anxiety. So, when we take the time to pause and breathe we are able to reset ourselves in the moment. I’m going to walk you through a breathing technique called four seven eight. I learned this along with my son a couple of years ago from his therapist and we still use it.

So, you start by breathing in deeply like you are breathing in slowly through your nose for four seconds. And at the top of the breath, you hold it for seven. And then you breathe out slowly through pursed lips for eight seconds. When you are breathing in, imagine taking in the smell of flowers, or a candle, or essential oils, or really whatever you like to smell. Flowers don’t do it for me because I’m allergic. When you are breathing out, purse your lips like when you are blowing out birthday candles while you relax the muscles in your face, jaw, shoulders and stomach.

So in through the nose for four seconds, hold and then out through pursed lips for eight. This breath work begins to send a signal throughout your body that you are safe. It slows your heart rate, decreases your blood pressure and that feeling that your heart is beating out of control. It also relaxes your muscles, releasing tension and allows better blood flow through your body. And this increased circulation alone can help reduce anxiety and panic as new fresh oxygen filled blood floods your entire body.

Again, the four seven eight breathing technique, I will leave a link in the show notes so that you can see how this is done and begin to do it yourself.

Third, write it down. Once you’ve had the opportunity to calm down your body, consider downloading your thoughts onto paper so they aren’t swimming around in your brain. Get them out of your head where you can see them and do something about them. Now, writing them down is just another way to create space between you and your anxiety, and you and the thoughts that you are having that are creating the anxiety.

Once you take a look at these thoughts like my child won’t have enough structure, you get to decide if you want to keep thinking this thought which plunges you into the abyss of anxiety. Or if you want to think a new thought that brings you into a new place of control over your own mind. No matter what the situation we always get to decide what to think. So, if a thought we are thinking doesn’t serve us, we can choose one that does.

No matter the situation we always get to decide if a thought we are thinking actually serves us and whether we want to keep it. To determine this I ask myself, does this thought support me right now? How do I feel when I think it? Does it help me take productive action or does it keep me spinning in anxiety? What else could I think instead? I will share with you some of the thoughts I am practicing about the summer. I can figure this out, I always do. I can be flexible and it does not need to be perfect.

Now, these are not grandiose or Instagrammable thoughts but they are thoughts that feel better to me than, oh shit, it’s summer, I don’t know what to do with him. When I feel just a little better, how does that show up in my actions? Well, for one, I’m not hanging out with my worst case scenario thoughts, so my body feels more relaxed and my brain is clearer. I get my calendar out and take a look. I fill in the plans we do have like ESY, my son’s trips with his father. Okay, what’s left? How else might I use this time?

Well, he really likes his tutor, maybe the tutor can stay afterhours and they can go on a hike or swimming. Or maybe unstructured time isn’t the worst thing. He is 14 after all, maybe there are things that he wants to do. Maybe he can create his own schedule. Now, depending on the age and functioning of your child this will look different for you. The point is, your ability to take productive action opens up when you are willing to process the feeling of anxiety and explore new ways of thinking about the circumstances.

This is a process, it is not a one and done. But over time you can begin to rewire your deep felt thoughts to ones you want to think on purpose in order to create the feelings and fuel the actions you want to take. And of course, we will talk about this lots more in upcoming episodes so stay tuned. Thank you so much for listening and I will talk to you next week.

Thanks for listening to The Autism Mom Coach. If you want more information or the show notes and resources from the podcast, visit theautismmomcoach.com. See you next week.

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Ep #12: Stepping into Your Role as the Expert

The Autism Mom Coach | Stepping into Your Role as the Expert

In last week’s episode, I showed you why you are always the expert when it comes to parenting your child with Autism. So, now what? Well, I’ve got one amazing tool for you to use for truly stepping into that role, so you can show up and parent from a place of unwavering confidence.

You might remember the Think-Feel-Act Cycle. Well, this is going to be a real game-changer when it comes to parenting your child with Autism. Now, I can hear some of you saying, “Lisa, I don’t even want to be the expert. I’d much rather the doctors have all of the answers.” Well, we’re covering that on today’s show as well.

Tune in this week to discover how to step into your role as the expert when it comes to parenting your child. I’m sharing how to handle your thoughts if you don’t believe being the expert is empowering, and I’m showing you how to use the Think-Feel-Act cycle to create the kind of emotions that will allow you to parent with confidence and certainty, instead of fear and overwhelm.

What You’ll Learn from this Episode:

  • Why we all want a how-to list for parenting, but nobody’s going to give it to us.
  • How to weigh the recommendations of professionals and make decisions based on your expertise when it comes to your child.
  • Why the things that work for someone else’s child might not work for yours, and why what works for you today might not work tomorrow.
  • How negative emotions like anxiety and fear make taking productive action incredibly difficult.
  • Why changing your thoughts will allow you to parent your child the way you really want to.
  • How to step into your role as both a parent and an expert, and own your decisions from a place of certainty.

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Listen to the Full Episode:

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Full Episode Transcript:

You are listening to episode 12 of The Autism Mom Coach, Stepping into Your Role as Expert. You are the expert on your child, now what? In this week’s episode, I’m going to be show you how to use the think, feel, act cycle to step into your role as the expert on your child. Stay tuned.

Welcome to The Autism Mom Coach, a podcast for moms who feel overwhelmed, afraid, and sometimes powerless as they raise their child with Autism. My name is Lisa Candera. I’m a certified life coach, lawyer, and most importantly I’m a full-time single mom to a teenage boy with Autism. In this podcast I’ll show you how to transform your relationship with Autism and special needs parenting. You’ll learn how to shift away from being a victim of your circumstances to being the hero of the story you get to write. Let’s get started.

Hello everyone and welcome to the podcast. I hope you are doing well and having a nice week. I spent some time this weekend emailing the winners of the selfcare package giveaway for rating the podcast. Thank you again, Sherry P, Gina C and Christina F for your reviews and I hope you love the Duross & Langel gift boxes as much as I do. And thank you to everyone who has reviewed the podcast, it really does help other moms like you find the podcast.

So, if you haven’t done so already please take a few minutes and let me know, how do you like it? What would you like more of? I’m listening. I’ve actually heard from a few of you so far and I have some great suggestions for episodes that I plan to cover this summer.

Okay, on to today’s topic which is part two in a two part series about experts, In episode 10 I talked about what an expert is and how you are the expert on your child. This week I will show you how to use the think, feel, act cycle to step into your role as the expert. But before I do that I want to address the elephant in the room and that is maybe you don’t want to be the expert. I certainly don’t. I would much rather the doctors, the therapist, or the educators to have all of the answers and just give me a list, tell me what to do and I’ll do it.

Unfortunately, there are no list, there are no one size fits all and there are no tidy solutions and this is really frustrating. So, if you hear you are the expert and this does not feel empowering to you, I get that. I feel this frustration a lot as well. However, the reality is there is no one person, one answer or one way. Autism and all of its comorbid cousins are complex neurological diagnoses that differ dramatically in their presentation from person to person. As a result, what works for one person won’t work for another.

And what works for you today might not work tomorrow. Experts have ideas, they have experiences and they have a broad base of knowledge from which they make suggestions and recommendations. We are the ones who have to weigh these recommendations and make decisions based on our knowledge of our child. And so, this is why stepping into our role as the expert is important.

Let’s get to it. I want to frame this discussion using the think, feel, act cycle. Remember the think, feel, act cycle from episode five? In case you didn’t listen to episode five or you need a refresh here it is. The think, feel, act cycle posits that how we think, the thoughts in our mind create our feelings, the emotions in our body and that these feelings fuel all of our actions. As you may have noticed, actions come last in the think, feel, act cycle. So, before I start to talk to you about the actions I recommend let’s start at the top of the cycle with the thoughts.

How you are thinking about yourself and your role is important. If you are thinking, I don’t know what to do or I don’t know what I’m doing, what kind of feelings will this create? Anxiety, uncertainty, maybe some fear and shame. And when you are feeling these emotions what kind of actions are you taking or not taking? Are you organizing your thoughts? Are you creating a plan? Or are you spinning in overwhelm and anxiety

By contrast if you are thinking, I’m the expert on my child or I know my child best, what kind of feeling does that create for you? Maybe confidence, or certainty, something better than fear and overwhelm hopefully. And when you are feeling confident or certain what kind of actions are you taking? Are you taking the actions that you want to take like emailing the team, or setting up a meeting? Or are you spinning in overwhelm and hiding?

So, the first thing you want to do is to identify your current think, feel, act cycle when it comes to being the expert on your child. How are you thinking about yourself? What feelings is that creating? And what actions is that fueling? Now, there are two points I want to make here about the ‘negative’ emotions like anxiety, fear or self-doubt. Now, emotions aren’t good or bad, so when I say negative, I mean it in the sense that they don’t feel good and you would probably prefer not to have them.

So first, negative emotions like anxiety and fear usually do not produce productive actions. They usually result in a lot of spinning, and self-doubt, and hiding. And second, I’m not telling you that you can’t fuel your actions with negative emotion. Let’s face it, most of us do this a lot. We fuel quite a bit of our actions with anxiety and fear. It can be done but there are some big drawbacks. One, it feels terrible. Two, it’s not sustainable. And three, it leads to burnout.

This is why before we even start talking action we want to decide how we want to fuel the actions we want to take. Remember from the self-coaching model in episode six, we get to decide how we want to think and feel about the circumstances in our lives. And how we are thinking and feeling, they are the how behind the what we do. So, this step is important and it’s not one to be overlooked.

Before you start making the list of all the actions you want to take, do the work to see what your current model is, whether it’s supportive of you. And if it’s not, now is the time to work on the thoughts that you can think now that will create the emotions to fuel the actions that you want to take. This work right here is really the foundation to everything else that I’m going to talk about in this episode. So, with that let’s get to brass tacks, stepping into the role as expert.

To do this I want to use the analogy of a company. I do this because wherever possible I like to make what is very personal, less personal because it really helps me clear my head a bit and to focus. So, for this, think of your child as a company and you are the CEO. The members of your child’s team from teachers, and therapists, and [9:23], to psychiatrists and psychologists, they are all members of your advisory board. They serve at your pleasure. They all have different backgrounds and responsibilities and they are all there to assist you in supporting your child.

The point here in stepping into your role as the expert is to see yourself at the head of the table taking in information from various sources, communicating information and ultimately making decisions.

Step number one, overcommunicate. Quality communication between you and your child’s team is helpful for so many reasons. It helps identify potential issues and strategies, coordinate responses and keep the team informed about what is and isn’t working across different settings. The more you and members of your child’s care team share relevant information the better equipped everyone will be to support your child in meeting their goals or navigating challenges.

To give you an example. My son started speaking when he was about four and a half but he was barely understandable. So, I would say until the age of eight there was a lot of interpretation of his words still going on. And add to this that his father and I lived in different homes because we were divorced.

So, in addition to going to school he was going in between two households. For this reason, I always insisted on a communication book from home to school that enabled his team to report on his day and for his family to update them about what was going on at home. Having this in place was helpful for me to understand what his day looked like and what I might expect at home and to be better able to understand and communicate with him when he did make attempts to communicate.

And it was a really simple book, just a few notes or checkboxes describing the day and this went a long way towards bridging the gap between home and school and keeping the team on the same page. And this is key. It was simple. It was brief. Because overcommunicating does not mean communicating every single thing. It means communicating the right things effectively, by effectively I mean friendly, or at the very least professional, getting to the point quickly and clearly stating what your ask is or what your recommendation is.

So, I want to give you a couple of examples of this from emails that I have pulled up. Okay, so this was an email to Ben’s school team. Good morning. Ben had a nice time skiing on Saturday. Anxiety picked up on Sunday afternoon and continued for the remainder of the weekend. He got on the van this morning with minimal resistance but he was crying and hitting himself. PRN administered at 7:00am, he may be tired. Please let me know how the transition into school goes today.

So just a couple of things to notice in this email. I let them know that he skied so they can have something to talk to him about and hopefully that will help him just feel a little bit more relaxed. I made them aware that his anxiety had been building since Sunday and to be on alert for possible SIB. And finally, I ended with the ask to let me know how today goes. Just a few short sentences quick and to the point.

Here is another example. Hi team. Ben had a nice time visiting family and friends this weekend. The transition home was difficult because he wanted to stay and was upset about returning to school. Specifically, he mentioned anxiety about his speech therapy schedule and being pulled out of class during reading. He does not like this because he is afraid of missing the lesson and having to make up work. Let me know when you are available to discuss ways to address this. So again, I gave them a little bit of an update about his weekend. They can be on alert to the uptick in his anxiety.

And I have also made them aware of a specific issue and I’ve let them know that I want to discuss it.

Second, encourage collaboration. Now, this one goes hand in hand with communication. Your child has several members of their care team and more likely than not they don’t know one another or communicate with one another. This is where you come in. As the CEO you have the ability to facilitate and encourage collaboration among the team members so that they can have a more fulsome understanding of the issues impacting your child, the strategies being used and how they are translating across provider and in different environments.

Now, in the age of email the simplest and most effective way of doing this is by using the CC option and copy members of the team, not in the [gotcha 14:58] way, the times you may email the teacher, and copy the principal, or maybe your special needs advocate. I mean more in the team building way where you’re clearly letting everyone know what’s going on and you’re doing it in a way that facilitates cooperation. So of course, paperwork, paperwork, you have to sign consents to allow professionals to talk to one another.

So, assuming you’re comfortable with that and you’ve done it, what I like to do is send a group email to introduce folks to one another and to let them know what I would like in terms of cooperation. So, for example, at the beginning of the school year I sent this email to my son’s school psychologist who I was just meeting and I was copying my son’s therapist.

And in the email, I’m not going to use real names, I say, Jill, I am copying Jack, Ben’s therapist on this email so that you have his direct contact information. He has been working with Ben for the last two years and sees him weekly in group and/or one-on-one sessions. Please touch base with Jack so that you can coordinate strategies between home and school. Thanks. Lisa.

Now, I do this for a couple of reasons. First, I want as many of my team members as possible to be on the same page and talking to one another. And I don’t want everything going through me because I think that that can hold things up a bit depending on schedules. And I have found a bit of upside from having the professionals on my son’s team speaking directly to one another. I also like it especially when things get, we’ll say, complicated. It’s nice to have other people vouching for you.

I will tell you that I have seen quicker reaction times when it’s my son’s therapist or school psychologist, or school nurse reaching out to my son’s psychiatrist than when I do it. Now, I’m not saying the psychiatrist doesn’t believe me, although I do wonder whether he thinks I’m being overdramatic at times and maybe I am. So, it is nice when other people, other professionals can pop in and say, “Here’s what we’re seeing and it’s concerning.”

So let me give you an example of an email where I tried to facilitate this communication. Hi team. I hope you had a nice weekend. Ben had a difficult weekend and we were unable to leave the house. His psychiatrist copied here is aware. School therapist, please let me know how today goes and feel free to each out to Ben’s psychiatrist directly. Just to be clear, these are my suggestions and my recommendations based on what has worked for me.

As the expert on your child and that includes being knowledgeable of the folks and their team, you may choose to go in a different direction. But for me in the last few years we’ve brought on so many additional people to Ben’s team that I start the relationship off like this just so I’m setting the tone from the beginning of what my expectation is. And as the expert, as the CEO, you are also in a position to do this.

Finally, number three, own it. The book stops with you as the CEO of your child’s team of advisors. You do not have to agree with all of the experts all of the time and chances are, you won’t. There may even be times when you decide to fire a doctor, change a treatment, or forego a recommendation. When this happens, it is more important than ever to own the role you play in acting for the best interest of your child.

For example, about a year ago we were recommended ABA therapy. We tried it for six months and if I’m being honest, I did it more of a feeling like I had to do it, or if I didn’t do it the doctors would judge me. And this is a topic, people pleasing that we will talk about in another episode. So, ABA therapy, controversy aside I didn’t want to do it because I didn’t believe it’s what we needed. My son was suffering from severe OCD. So how is ABA therapy going to help him? And guess what? I was right.

The ABA providers were utterly stumped as to how to handle severe OCD and it was a shit show. All of that to learn what I already knew but I was afraid to own. For me owning it means the ability to take courageous action based on what you know in the moment and to have your own back. Owning it looks like, here is what we have decided based on whatever your reasons are and not beating yourself up with self-doubt. For example, when I reported that we were no longer doing ABA therapy to my son’s doctors, it was, it wasn’t working for us so we are no longer doing it.

It wasn’t, well, we stopped but I’m not sure, maybe we should. I don’t know, maybe you’re right, maybe I’ll regret this. Owning a decision today does not mean you never reverse course. It means you don’t beat yourself up now and in the future about the decision because there’s no upside to this. It erodes your confidence and it undermines your role as an expert. So, when I say own it, I mean have your own back about whatever decisions that you make. And whatever decision you make today that’s a decision that you’ll make today.

You can change your mind tomorrow, that’s your option and it’s also your option to decide that whatever you do that you’re going to have your own back.

Alright, so let’s sum up. You can use the think, feel, act cycle to step into your role as the expert on your child. Start at the top of the think, feel, act cycle by deciding how you want to think and feel so that you can fuel the actions you want to take. From there, overcommunicate, encourage collaboration and own it.

That’s all for this episode. Thank you so much for listening and I will talk to you next week.

Thanks for listening to The Autism Mom Coach. If you want more information or the show notes and resources from the podcast, visit theAutismmomcoach.com. See you next week.

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