The Autism Mom Coach with Lisa Candera | Reality Check

This week’s episode will be a little different from past shows. I’m giving you an update on what’s going on in my world, sharing my story of giving myself a reality check when I needed it most. This month marks one year since I enrolled my son in what I thought would be the perfect environment for him. However, the reality wasn’t what we had expected.

Seeing your child struggle is incredibly difficult. You do everything you can for your child, but when reality kicks in, our high hopes can quickly evaporate. So how do you proceed when you receive a reality check like this and still show up for your child?

Tune in this week to hear my story of receiving a reality check over the past year. I’m sharing the journey I’ve been on over the past 12 months and giving you my tips for dealing with the reality of the life we’re living as parents of a child with Autism.

 

If you are ready to take control of your Autism parenting experience, my Resilient Autism Mom Program (RAMP) is for you. In my 1:1 coaching program, I teach you the tools and strategies you need to conquer the Autism Mom Big 3 (stress, anxiety and burnout). To learn more about my program, schedule your complimentary consultation now.

 

 

What You’ll Learn from this Episode:

  • How crushing it feels when you start to lose hope.

  • The dangerous, prescriptive, unhelpful messages we receive as Autism parents.

  • Why your child may still struggle developmentally, no matter what you do as an Autism parent.

  • How to give yourself the reality check you need as an Autism parent.

 

Listen to the Full Episode:

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Featured on the Show:

  • If you’re ready to apply the principles you’re learning in these episodes, it’s time to schedule a consultation call with me. Real change comes from application and implementation, and this is exactly what we do in my one-on-one program. To schedule your consultation, click here!
  • Sign up for my email list to get notified of coaching opportunities, workshops and more! All you have to do is go to my home page and enter your email address in the pop-up.
  • Schedule a consultation to learn about my 1:1 coaching program.
  • Join The Resilient Autism Moms Group on Facebook!

 

Full Episode Transcript:

You are listening to The Autism Mom Coach, episode 107, Reality Check.

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. In this podcast, I am going to share with you the tools and strategies you need so you can fight like hell for your child without burning out. Let’s get to it.

Hello, everyone and welcome to the podcast. I am so glad you’re here and I hope you’re doing well. I have one update for you before we get started on today’s episode and that is, I have a new Facebook group. Actually, it’s my old group, but I renamed it The Resilient. Autism Mom Group, so if you’re on Facebook, join the group. My goal is to be very active in this group and to use this as a forum for getting to know you better, understanding where you’re struggling and to give you additional support.

In fact, during the last week of March, I plan to go live a couple of days in a row, all about IEPs. IEPs have been a big topic in my coaching over the past couple of weeks. I’m seeing a lot of similarities in the things that I’m coaching my clients on. And I want to share with you what I’m talking to them about so that you can go into your IEP meeting more prepared mentally and emotionally so that you can show up the way you want to show up.

So all you have to do is go to Facebook, look up The Resilient Autism Mom Group, or go to my show notes, and I can’t wait to see you there. When you join the group, please introduce yourself. Tell me about you. Tell me about your child and anything you are looking for support with. Alright, that is it for the Facebook update.

This episode is going to be a bit different than previous episodes where I lay out a topic and I teach on the topic and I give examples. This is really just going to be more of an update about what’s going on with me and a reality check from my point of view of course. So here’s what’s been going on. For the past few weeks, I have been struggling a lot with grief. For one thing, my son is struggling, and that’s a difficult thing for any parent to know about their child.

And this is also the one year anniversary of when I took my son to Utah to go to a residential school for kids with Autism, where he would be in very small classrooms. He would have the opportunity to develop life skills, be in community with other kids and be getting round the clock therapeutic support. And I just thought that this would be exactly what he needed at this point because for the three years prior to that, ever since turning 13, he struggled tremendously with his high anxiety and his OCD. And as a result, he had been hospitalized a few times.

And so in my mind, he had basically missed the last couple of years of his life in terms of socialization and all of those life skills. And I wanted him to be able to have the opportunity to gain some ground and to do it in a place where he’d be getting round the clock support. And round the clock opportunities to learn new skills, to adapt to new situations and to thrive. So I was so excited about this. My son was so excited. He loved the idea of starting over. That really resonated with him.

And of course, the idea of going to Utah and being able to ski in Park City just blew his mind. And so we worked last year for a few months to make this happen. There was a lot of work that went in the back end in terms of negotiations with the school applications, lots of paperwork to finally make it happen. But we did and last year, on March 6th, I delivered him to the school and I left on a plane to go home. And within a couple of days it all fell apart.

And within the week he had been transported out of the school to a mental health hospital for stabilization. And from there things really just never got better. He never returned to the school and between that point and October of this year he was in and out of hospitals. He bounced from my home to hospitals to other facilities where he also was expelled, back to my house, now back to the hospital. And this has been the roller-coaster of the last year. It started with such high hopes and they evaporated rather quickly.

And I don’t think I ever processed the loss that I felt from this experience, the loss of my hope for my son of being able to attend the school, to get the support that he needed. The loss of the kid who I believed to be moderately Autistic. The loss of the kid I thought and hoped, was much more capable and less impaired than my son actually is or he’s presenting to be at this moment. And all of this really hit me at the beginning of the month. And I think that’s what happens with anniversaries is the weather is similar to when it was last year.

I’m remembering the shopping trips that we took to prepare him. I’m remembering the little party that we threw for him. And I’m remembering flying out to Utah. I’m remembering all of the excitement, and it’s gone. It’s not there at all. That’s not where we are at all. And it breaks my heart, especially because my son is struggling so much right now. I’ve just been crying a lot. I’ve just had a really hard time with it. And again, I think it’s because I didn’t grieve it last year.

I think I was just heads down, getting through the next day, getting through the next hurdle, getting through the next placement, getting through the next medication change, getting through the next therapy. Hoping that maybe this will work, maybe that will work and never really just sitting there just to be like, “The loss of all of that hope.” And I’m not talking about hope in my son. I’m talking about the hope of really this school, this solution of being the magic bullet.

I’m also talking about the loss of the kid I thought my son was in terms of his level of functioning. He appears to be very high. Well, I’ll say he appeared to be very high functioning in a number of ways. He’s very verbal. He’s very pro social. He’s somewhat athletic. He’s a great skier. All of those things looked in the vein of somebody who was at least moderately functioning.

And the fact is, because of the severity of my son’s OCD, he’s not functioning at all. He’s basically stuck inside of his brain. And then the frustration that comes with that, along with a mood disorder that looks like aggression. And aggression from a 16 year old looks and feels a lot different than it does from a six year old. And so all of that, it’s just, I think it hit me and I let it hit me. I didn’t make it mean I’m a bad mom. I didn’t make it mean I’m doing anything wrong. I just made it mean that I’m really fucking sad right now.

So I share that with you because this is the reality of the life that we are all living. And I’m not saying that what’s happening with me will ever happen with you specifically. But what I do know from my own experience and from coaching other moms is that this is a reality that a lot of us do face. And there aren’t many places that we can go to talk about it. And there aren’t many people talking about their experiences with it and I understand that because how much of your child’s situation do you disclose? How much of your own situation do you disclose?

Am I oversharing? All of those questions swirling in my brain about whether I should share. So why am I sharing this? Well, I want to add another voice to the conversation about Autism because so much of what I see focuses on the diagnosis and the early years. And there’s a lot of focus on early intervention and doing as much as you can as fast as you can.

And while I get that, I also think that that messaging is so harmful to so many of us moms. Because I think we interpret that as if you do enough, if you do it fast enough, if you do it perfectly enough, then your child won’t struggle with symptoms related to their Autism. I think this is a really dangerous message, not from the standpoint of early intervention. I think that’s great. I think the faster you know, the more you can do, generally speaking, I think that is better.

I think early intervention is great when you find out, being able to do whatever you can to get your kid the support that they need, that’s all great. But it’s not great when we’re using it against ourselves. And I see this all of the time. And the problem here and again, this in my opinion, is that sends the message to moms that if you do enough and you do it right, your kid won’t struggle with the symptoms of their neurodevelopmental disability.

In my opinion, you can do all the interventions in the world and your child may still struggle with communication, social interactions, transitions, social cues, frustration tolerance and be developmentally delayed. That’s not on you. That is what it means to have a neurodevelopmental disability. I’m not saying this to scare you or depress you. I’m offering it to you as a way of letting yourself off the hook, not for advocating trying new things or holding hope, but off the hook for blaming and guilting yourself because your child with Autism struggles with, well, Autism.

Because if you do that, you are going to beat yourself into the ground mentally, emotionally and physically. Any sign that your child struggles in the areas traditionally impacted by their Autism, when you interpret that as because you didn’t get them diagnosed early enough, you didn’t do enough speech therapy or you didn’t have enough play dates, you’ll never be off the hook. You’ll never be able to feel any peace.

And when you’re feeling defeated, how are you going to show up for your child? It’s going to be a lot harder, and it’s going to feel terrible because there’s no amount that you can do that’s going to make you feel better about you, better about the parent that you are. Because the reality check here and again, this is my opinion, is that our kids have Autism, which is not curable, or it hasn’t shown signs or I don’t believe there’s really great evidence that it is yet, and I hope that that changes someday.

But right now they are diagnosed with a neurodevelopmental disability that stays with them for life, that impacts them in some way. Are there things that can be done to support them? Absolutely. That doesn’t mean they won’t struggle. That doesn’t mean they still won’t be Autistic or have traits of someone with Autism. And again, the reason I want to impress this upon you is because I was the person 10 years ago who really believed that if I did enough and I did it fast enough and right enough that my kid would not be having the problems he’s having now.

This would not have been on the horizon. There is no way that someone who did as much as I did and worked as hard as I did would have this outcome. That’s just bad math. If you’re looking at your child’s results and where they are, and you’re interpreting that as everything that you’ve done hasn’t been enough, you are in a lose/lose situation. The fact is everything you’ve done has gotten them this far. They wouldn’t be where they are without everything that you’ve done.

And the fact that they still struggle with Autism, there is a reason for that. It’s because they’re Autistic. I don’t mean this in a way of, they won’t have independent lives, they won’t have happy lives. Not at all. I’m just saying that judging yourself and judging your efforts and judging your competence as a parent based on whether or not your child exhibits traits of the disability that they have is like eating a shit sandwich every day. You don’t need that.

You need to let yourself off the hook. And the magic of that, once you do that, you will have so much more energy to show up for your kid and support them in any way you can. Maybe that’s supporting them and becoming who they are, whoever this person is, however they express themselves in their life. Maybe it’s helping them, fill out the applications for college, understand different social cues, whatever it is. You will have so much energy for it because you’re not blaming yourself that they’re here right now.

You’re not looking at where they are as a result of you not doing enough. That’s the reality check. That is all for today. And I want to hear from you. I want to hear your thoughts on this episode. I want to hear what resonated, I want to hear what didn’t. Share that with me in the Facebook group. There will be a post in the group about this episode, and I invite you to share your thoughts. Alright, that is it for this week. I will talk to you next week. Have a great week.

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

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