107: Reality Check

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. Lets get to it.

Hello, everyone and welcome to the podcast. I am so glad youre here and I hope youre doing well. I have one update for you before we get started on todays episode and that is, I have a new Facebook group. Actually, its my old group, but I renamed it The Resilient. Autism Mom Group, so if youre 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 youre 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. Im seeing a lot of similarities in the things that Im coaching my clients on. And I want to share with you what Im 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 cant 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 whats going on with me and a reality check from my point of view of course. So heres whats been going on. For the past few weeks, I have been struggling a lot with grief. For one thing, my son is struggling, and thats 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 hed 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 dont 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 hes presenting to be at this moment. And all of this really hit me at the beginning of the month. And I think thats what happens with anniversaries is the weather is similar to when it was last year.

Im remembering the shopping trips that we took to prepare him. Im remembering the little party that we threw for him. And Im remembering flying out to Utah. Im remembering all of the excitement, and its gone. Its not there at all. Thats not where we are at all. And it breaks my heart, especially because my son is struggling so much right now. Ive just been crying a lot. Ive just had a really hard time with it. And again, I think its because I didnt 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 Im not talking about hope in my son. Im talking about the hope of really this school, this solution of being the magic bullet.

Im 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, Ill say he appeared to be very high functioning in a number of ways. Hes very verbal. Hes very pro social. Hes somewhat athletic. Hes 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 sons OCD, hes not functioning at all. Hes 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, its just, I think it hit me and I let it hit me. I didnt make it mean Im a bad mom. I didnt make it mean Im doing anything wrong. I just made it mean that Im 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 Im not saying that whats 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 arent many places that we can go to talk about it. And there arent many people talking about their experiences with it and I understand that because how much of your childs 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 theres 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 wont struggle with symptoms related to their Autism. I think this is a really dangerous message, not from the standpoint of early intervention. I think thats 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, thats all great. But its not great when were 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 wont 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. Thats not on you. That is what it means to have a neurodevelopmental disability. Im not saying this to scare you or depress you. Im 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 didnt get them diagnosed early enough, you didnt do enough speech therapy or you didnt have enough play dates, youll never be off the hook. Youll never be able to feel any peace.

And when youre feeling defeated, how are you going to show up for your child? Its going to be a lot harder, and its going to feel terrible because theres no amount that you can do thats 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 hasnt shown signs or I dont believe theres 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 doesnt mean they wont struggle. That doesnt mean they still wont 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 hes 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. Thats just bad math. If youre looking at your childs results and where they are, and youre interpreting that as everything that youve done hasnt been enough, you are in a lose/lose situation. The fact is everything youve done has gotten them this far. They wouldnt be where they are without everything that youve done.

And the fact that they still struggle with Autism, there is a reason for that. Its because theyre Autistic. I dont mean this in a way of, they wont have independent lives, they wont have happy lives. Not at all. Im 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 dont 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 thats supporting them and becoming who they are, whoever this person is, however they express themselves in their life. Maybe its helping them, fill out the applications for college, understand different social cues, whatever it is. You will have so much energy for it because youre not blaming yourself that theyre here right now.

Youre not looking at where they are as a result of you not doing enough. Thats 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 didnt. 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.