Show Notes
Hi everybody! Welcome to the Growing Through Autism Podcast. This is so exciting! I'm Erin, and I'm so happy and so grateful that you're here with me. I have lots that I want to share.
Let me just start by sharing that I have a son whose name is Noa. He's autistic and he's non-speaking. He's 17 years old, and as with any teenager, we've experienced a lot of things together. We've learned a lot from each other, that's for sure. With him having autism, we've really experienced a lot of challenges. Through all of that, I've come to really realize how much the relationship that I have with myself can affect my perspective about different things and the relationship that I have with my son. And so, in doing my own inner work, it's really helped me learn how to let go of some of the guilt and overwhelm that can come from being a special needs parent. I've definitely been in a place in the past where I was totally consumed by the autism diagnosis and it affected everything in my life. Going on this journey of doing my own inner work has been tremendously helpful in so many ways.
My intention for this podcast is to share my journey so that I can inspire and empower other parents who are in similar situations. I really want to help you see your kids for all that they are. For you to have more joy in your life, build a strong, beautiful connection with your autistic loved one. I feel like me working on myself, has given me all those things.
There have been so many people in my life who have helped me and supported me, and I really want to pay all that love forward. I feel like this is one of the best ways that I can do it. So I'm hoping it'll be helpful for you.
To give you a little bit of background, Noa is my first born. I have two kids. I have my son, Noa (17) and my daughter, Ailana (14). My pregnancy with Noa was super easy. I loved being pregnant. The birth was fine for the most part, no complications or anything. During the first year, all the milestones were met. Except now looking back, there were a few things that maybe might have raised some questions or things to look into more. So one of the things was that he wasn't walking yet, but I was working at the time and when I would come home from work, I would carry him and hold him every chance that I got. He loved being held. I wrote off the fact that he wasn't walking yet because I thought, "Well, I'm holding him all the time. I'm not giving him the opportunity to develop those skills yet." Another thing that could have raised some red flags was that he wasn't pointing with his index finger. He would gesture at things to express what he wants, but I've come to learn that pointing is really an indicator that something could be going on. One of the last things was when he was a baby, I would sing to him and rock him. Noa really liked me to do hard bouncing, like really, really hard rocks. I remember asking myself, "Should I be rocking him this hard? But it just seemed so soothing for him. Now I know about the proprioceptive and vestibular systems and his body has high needs in both of those areas. Understanding that now, it makes sense that he wanted to be rocked so hard, but at the time, I had no clue.
Everything other than that was great. He babbled, was very interactive, and then, like so many other people, once he got the MMR vaccine, he regressed. (I don't know if that's what caused it or not, but I focused on moving forward and learning how to support my son.) He stopped babbling. He wasn't engaging in the same way as he had been. Before, when we would play peekaboo put our hands up and say, "So big!." He would do it and we'd laugh. But after the regression, it was almost like I could see in his eyes he's taking it in but he wasn't responding outwardly the same way.
At the time, I didn't really know anything about autism. I had heard the word but didn't really know what it was. I was working at the time and my sister-in-law was babysitting him. She also cared for her mom who had been a special needs teacher for 30 years. And when he lost skills, she had suggested it might be worth looking into. I'll be honest, at first I felt really defensive. I didn't say anything to her, but internally, as I read about autism, I thought it sounded like anyone could be considered autistic. But there was something in my gut that was telling me to lean in, just learn more. I needed to find out. So, I learned everything that I could about autism.
At work, I would get everything I needed to get done in like an hour time and the entire rest of the day, I would be doing research on autism. But even doing all that researching and learning, knowing the possibility was there, I don't think I really accepted the fact that this could be real. This could be a diagnosis that my son has. I don't think I really accepted it until we went to the occupational therapist and we had an assessment done for fine motor and gross motor. At the end of that initial appointment, I asked the OT if they thought there's a chance that my son could have autism. Their response was that although they couldn't make an official diagnosis, there are a lot of signs that would indicate that he likely does.
We finally got an official diagnosis right before his second birthday. I think for my husband, Mau, hearing it directly from the psychologist was what helped him fully accept it. At the time when Noa was diagnosed, they called it "mild autism". But looking back, what does that even mean? Noa is non-speaking and has apraxia. If you're not familiar with apraxia, it's basically when you can't get your body to do what you want it to do, when you want it to do it. So, the combination of apraxia, Noa's inability to verbally communicate clearly, and difficultly showing and expressing what he understands has shifted how many professionals view and treat him. At school, he went from a mild autistic class to a severely autistic class. Needless to say, I think that the labels are irrelevant and I don't think that they really tell us anything. I believe there's so much potential in every single one of our kids.
At the time of diagnosis, the regional center recommended 40 hours of Applied Behavior Analysis (ABA) per week. We would also go to OT every week too. I am one of those parents who wants to learn all of the strategies because at the end of the day I would rather be the one to work with my son. I was in every ABA session, every OT session, learning as much as I could. I was teaching my family and friends how we are "supposed to" do things with Noa because that is what "the experts" are telling me and they know what they're doing. Even though looking back, my gut was telling me something different. I so wish that I could go back and just follow my gut, but here we are. I was meant to go through that because I had a lot of learning and unlearning to do.
Noa was doing ABA and OT, and simultaneously, I was doing a ton of research about the biomedical piece and nutrition. I have my degree in nutrition and am a really big believer in the power of food and healing the gut. So I researched all the diets and I picked the most, extreme diet because I thought, he's little and I have so much control over what he's going to consume. If I start with the hardest thing, then we can build on top of that. I chose to do the specific carbohydrate diet and eventually the GAPS diet. I did those diets until my Noa was 11 or 12 years old. And when I say we did the diet, like I was hardcore. At school, I let them know not give him anything else. If the class was having a party, I sent special homemade treats or just kept him home. I'm not going to lie. The diet was hard. In fact, I stopped working so that I could really do this diet. I spent so many hours in the kitchen making food. Because the diet was so restrictive, there was pushback from different people and I really had to overcome that as well.
Before starting the diet, my son would bite his hand. And when I say bite his hand, I mean, biting it, breaking skin all the time. He would bang his forehead on things and he had a little knot on his forehead. The first two weeks were really hard because he was detoxing Luckily, I had read about it while doing my research, so I was expecting it to be tough. After getting over that hump, he stopped banging his head. He hasn't banged his head like that ever since. So I am grateful for that. Noa was still doing some self injury like biting his hand, but it wasn't as intense or as frequent or last as long.
It wasn't breaking the skin as often. His poor hands are so scarred up. But even now he still does do biting.
I also tried just about every biomedical approach that I could afford doing. I even applied for grants and had a GoFundMe page to raise money so that we could see a DAN! doctor was, which was the big thing at that time. Basically, it's an autism specific doctor to help with all things biomedical. Even in doing all that, nothing seemed to move the needle that much.
I think back, and I'm going to be honest, I wonder if pushing so hard to try to "recover" my son, actually stole a lot of his childhood from him. I became so focused on everything needing to have a purpose. We always had to be working on something, even when we were playing. There were always expectations and analysis going on in my mind, instead of just being. I wish that I could go back and change some of that. It has taught me to be more aware of myself because even now, I can still get caught up in doing that. I have to mentally catch myself, shift my thoughts and allow myself to just be, then things start feeling better in the interaction.
During this time, with the diet, the biomedical, the ABA, all this stuff, I could see and I could feel that Noa understands everything. It's not a lack of understanding. A lot of times it wasn't a lack of capability either. He could do all of these things in his ABA sessions, but he wouldn't do them in eight out of 10 trials. And at the time we did ABA, it was very discreet trial based. So they were asking him to do the same thing 10 times in a row. And it had to have 80% accuracy during this one session before they would allow him to progress to another goal. In my gut, I felt like, what the heck? This is not right. I would get annoyed doing that. And I could see his frustration building. Now that I know about apraxia, I think a lot of it could have been due to apraxia, for him to repeatedly do the same thing over and over. ABA was like a whole journey within itself. I did it for about six or seven years, like intense ABA because that's what the "experts" are saying that we're supposed to do. This is the way that we're supposed to approach things. And I was trying to trust that, but really I felt maybe it's not right for my son.
So around the age of nine, I started exploring other behavioral therapies that were out there. Ultimately, I decided to transition to RDI, which it's called relationship development intervention. It has a completely different approach than ABA. It was the first time that I heard about presuming competence. This is when you is believie that somebody with autism has the ability to learn, to think, and understand. I did believe that, but to be able to put it into words was so empowering and it helped me start toshift my perspective mentally and ultimately how I was interacting with my son. Instead of being like, you need to do this and it needs to look exactly as I'm picturing in my head, there was so much more flexibilit.It was a more natural approach to how we work together, how we do things. It was less about demands like ABA and more about an invitation to come join me, an invitation to participate. I think that really helped to take some of the pressure off both of us because his ability to participate increased. It was where he wanted to join versus I have to. I think it feels so much different in the moment and in the, in the experience. So much better. I'm really grateful for that shift.
Things started to feel more in alignment with what I felt in my core. And then around, I want to say age 11 is when puberty hit. It hit hard. Oh gosh, it was so hard. The self injury, like the biting, started happening so often and so intense. Noa just seemed like he felt so uncomfortable in his body. I was trying anything and everything to try to help.ease some of that discomfort, even just a little bit. It just felt like nothing was helping. I want to say that first year, I probably cried at least once every single day, if not more because I just felt so helpless.
The more it seemed like I couldn't help, the harder I would push. I ended up getting to a point where I felt like this overwhelm and this helpless feeling, it's totally consuming me. It's totally affecting everything in my life, in not a positive way. That if I don't take my foot off the gas, that I'm going to completely burn out. And I can't do that because then what does that mean? I cannot let that happen. I felt like I was on that ledge of, if I keep going forward, I'm going to fall off. And so it was like I was catching myself before I totally lost myself. But at first I questioned if that meant I was giving up or losing hope. I realized it doesn't mean that at all. I knew that I would still try different things and it just means that I'm going to slow down. I'm going to make space for something else because what I'm doing is not sustainable. I'm just going to take a little breather and take a little break.
So, we still were mostly doing the diet, but I got a little more relaxed. And it wasn't that big of a difference if he had something that wasn't on the diet. Or at least if there was like a negative effect, I can anticipate it so it didn't feel as hard.
I think it was around that time that my best friend introduced me to the world of podcasts. The first one that she recommended was Tim Ferriss interviewing Brene Brown. And dang! That interview was so good. I think that's probably what opened the door for me to start my own journey on personal development and doing inner work and all those things. I've listened to lots of personal development and functional medicine, and of course, autism podcasts. But I think eventually I started listening to mostly personal development because I started getting so much value from it.
It took me probably a good year and a half before I actually started putting some of the things that I was learning about into practice because I didn't have the capacity to do anything. Once I had created space to actually start trying things, they started getting better again. I found when I started being more self reflective and more self aware that that I started really understanding how much control I actually have over my life. Because before it felt like life's just happening to me. I don't have any control. When I started understanding that there are things that I can control and things I can't, and learning how to navigate both of those things in a way that served me, and approach things intentionally, it really started helping shift things for me.
Another thing that made a huge difference is that before then, I was so hyper focused on all of the challenges that we were facing. It was really hard for me to see the good things that were there. To let myself acknowledge progress we were making.But I started being intentional about really trying to look for the things that are going right, the things that are feeling good. And acknowledging them. It started making a huge impact, especially on the days that are hard. I really try to be mindful about focusing on the good things versus just the challenges. When I acknowledge them with Noa, I can tell it feels good for him too. And it feels good for me to acknowledge it for myself. And then to share it with Noa and see his reaction, it heightens that good feeling for me and it strengthens our connection. It's so amazing!
Something else where I learned a lot was in 2019. As you know, Noa's non-speaking so I signed up for a course where I could learn how to help him communicate using a letter board. It was Flourish Communication that we signed up for. While I was signing up for communication support, I got so much more out of that course than I could have imagined. We definitely learned communication skills, but I was also reminded. about how valuable community is. I had my family and my friends, but most of the people around me didn't have a child with autism. They did their best to offer support, but they didn't know what it was like to walk in my shoes. But these parents in this class, like they get it. You get it. I know you get it. If you're reading this, you get it. And there's just something about sharing with somebody who gets it or even holding space for somebody else who gets it, that is so meaningful. When I was young, I connected with a lot of other parents who had kids with autism. And then I got so into all the things that I thought I needed to do and "fix" that I pushed that to the side. This program really connected me back to community and reminded me how valuable it is and how much I needed that.
As much as I'm growing, I want to help you grow. And I just want us to grow through autism together. So until next time, I'll talk to you later. Bye.